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First Person: Fighting human trafficking in Malawi

An award winning disability activist from South Africa, and one of 17 United Nations advocates for the Sustainable Development Goals, lives with spinal muscular atrophy, and faces many difficult daily challenges. Ahead of International Day of Persons with Disabilities, on 3 December, Mr. Ndopu discusses how he has overcome barriers to travel the world advocating for others with disabilities. This feature has been edited for clarity and length. Eddie Ndopu was talking to Melissa Fleming, the United Nations Under Secretary General for Global Communications. You can hear the full interview on the UN podcast, Awake at Night. “At the age of two, I was diagnosed with spinal muscular atrophy, a degenerative condition that affects the muscles and results in progressive weakness. In other words, the older I get, the weaker I become, and my doctors gave my family a prognosis that I would not live beyond the age of five. I have outlived myself by 25 years and counting.  However, Im grappling with the physical manifestation of this rare disease and what is doing to my body: What I was able to do five years ago, Im no longer able to do today. I had dreams of becoming an artist. I used to sketch incessantly, and now Im no longer able to do that. But, on the other hand, my disability has really been a gift in the sense that it has allowed me to dream new dreams. I still have my spirit. I still have my mind and I still want to be of service to humanity and the world. And so, while I move through the world, with great difficulty, I know that there is so much more that Im able to offer. My mother has truly been the wind beneath my sails. I admire my mother, not just as a parent, but as a human being, who, in many ways, has sacrificed so much of her own life in order to step in and not just be a primary caregiver but really be my biggest advocate. Because of my degenerative condition, I need to be turned at night every two hours to prevent pressure sores from forming. My mom did that for the better part of my life. Every day, seven days a week. I need to wake up to three hours ahead of time to get dressed. I need assistance, with bathing, with clothing, with feeding, every aspect of my life thats physical. All of that needs to be facilitated. Right now, I have a team that consists of about four people but my mum did all of that, for twenty something years, single handedly. The reason why I was able to attain a mainstream education at the age of seven and become one of only a handful of disabled children in the entire country to be enrolled in a regular school, is because of my mum’s persistence, knocking on every door and being told, “This is not going to work”. She did not just do it as my mom. I think she did it because she believed deeply that I am deserving of a life that is truly open, and so I really owe her a debt of gratitude.  I have since gone on to graduate from Oxford with a Masters in Public Policy and became the first African with this degenerative disability to do that. Ever. For me, thats not just a personal achievement, it also feels like a symbolic victory for all of the disabled kids around the world who never get to see the inside of a classroom. The turning point was when I was offered admission into the African Leadership Academy in Johannesburg. Its a Preparatory School for future world leaders. I made it all the way to the finalist weekend, and they called and said, ‘were not sure were able to meet your needs’. I wrote a letter to the founders of the Academy and I said, My name is Eddie. I believe I am a leader, I think you have made a mistake. I really, really need to be in the school, because I have a dream to make education accessible and inclusive for all of the children with disabilities on the continent of Africa. I want to be able to do that.

https://news.un.org/en/story/2021/11/1106042

November - A Month Of Disability Inclusion Hitting The Headlines

In the UK the tag line for the global climate change summit, COP26, this month in Glasgow was “Together for our Planet”. It was billed as a moment to “unite the world” and bring real concrete change to address the climate crisis. Yet to bring everyone together, to allow everyone to unite, we need everyone to have at the very least access to the debate. A participant walks past a COP26 UN Climate Change Conference poster on the first day of the COP26 . . . [+] UN Climate Change Conference at the Scottish Event Campus in Glasgow, Scotland, on October 31, 2021. COP26. Israeli minister, Karine Elharrar, whose attendance depended on the venue catering for her wheelchair was unable to take part and participate in these vital conversations. The car she arrived in was not allowed inside the event, despite her delegation informing organisers of her access needs in advance of the conference. The shuttle bus she was offered instead was not wheelchair accessible. The UKs Environment Secretary, George Eustice, responded to the incident by saying “What would normally happen in this situation is that Israel would have communicated that they had a particular need for their minister”, yet the Equality Act 2010 requires all buildings to have disabled access. The build up to this event has been in the works since 2020, the Equality Act was passed in 2010. The plans for this particular event went through a number of checks before they were signed off. This ‘mistake’ is evidence that inclusion is not at the top of the agenda, it’s not a priority, it’s an afterthought. If leaders want to host global events to discuss the vision of the future, all of those invited to sit at the table must be able to do so. Whilst this supposed mishap permeated the press in the UK, we are seeing promising discussions revolving around disability inclusion on the other side of the pond. This month, in the U. S. , the Supreme Court was waiting to hear a case that could potentially have profound effects on disability rights. The question at the heart of the case, CVS Pharmacy, Inc. vs. Doe, was whether claims of unintentional discrimination against people with disabilities are allowed under federal law. The debate demonstrated vital progress to ensure that inclusion tops the agenda in policy discourse and decision making. Presently, the work of disability activists has paid off, CVS has withdrawn its case as the pressure from those fighting for the protection of rights for persons with a disability proved overpowering . This is a step towards changing the global narrative that currently sees disability as a side note. An image of the sign for the CVS Pharmacy as photographed on March 16, 2020 in Wantagh, New York. . . . [+] Yet, as we have seen time and time again with disability inclusion, where there are steps forward there seem to be steps back. In Canada, the government has announced that changes to Canada’s medical assistance in dying law are officially in force. The new law includes changes to eligibility and procedural safeguards which now see the decision period for assisted death reduced to 90 days. In response to this decision multiple disabled people have advocated their anger and frustration at the system. Jeff Preston, who has muscular dystrophy and was recently interviewed by CBC on the decision stated, We suffer because we are isolated in our homes, not because were disabled, but because we dont actually move forward on accessibility. ” Further to this Dr. Ramona Coelho, who predominantly works with persons with a disability, expressed her concerns over the new declarations These people are asking for disability supports that are being declined. During COVID, the disparity with this community has become worse. Many of them are denied home care services, and yet they can die within 90 days if they become suicidal. . . that is an extremely weak safeguard.

https://www.forbes.com/sites/carolinecasey/2021/11/22/novembera-month-of-disability-inclusion-hitting-the-headlines/?sh=2c2827e13f44

4 Common Ways Companies Alienate People with Disabilities

Executives and product team leaders need to stop excluding people with disabilities and understand that their decisions affect how users interact with every aspect of their products and services. At this point, leaders have the right tools at their disposal, but need to become more aware of their oversights. The author presents four common mistakes leaders make that prevent people with disabilities from interacting with their companies.  First, they expect users to do the hard work for them. Second, they don’t understand that accessibility requires constant maintenance. Third, they overlook how accessibility applies to every step of the customer journey. Finally, they fail to bring accessibility tools into their own teams’ workflows. Every day, business leaders make seemingly small but meaningful mistakes that leave a large population of users with disabilities out in the cold. Companies are aware that they should be prioritizing the accessibility of their product and in turn the inclusiveness of their brand in order to maximize their reach and value. Yet in many cases, they make the wrong choices because they don’t know where their gaps in understanding are or who they’re unintentionally excluding. For example, earlier this year, there was outrage after leading UK train websites went grayscale as a tribute to Prince Philip after his death a well intentioned change that left people with visual impairments unable to use them. Executives and product team leaders need to stop excluding people with disabilities and understand that their decisions affect how users interact with every aspect of their products and services. At this point, we have the right tools at our disposal, but we need to become more aware of our oversights. Avoid the following four mistakes that prevent people with disabilities from interacting with your company. You can’t rely on user feedback to patch up your product for you as you build it. Expecting to power ahead and have your users flag your product’s flaws through in app ratings, sporadic surveying, and quantitative feedback that gives little depth is lazy and inefficient. You have to be doing 80% of the hard work, which means making the conscious effort to avoid the design flaws that will exclude people from using your product. Anyone can educate themselves on where those problems might arise by capitalizing on the available resources for designers and product development teams, such as Apple’s Accessibility for Developers platform. Only expect users to assist you in refining your product and concept and to pick up on issues you missed despite your best efforts.  You won’t be 80% perfect to start, but your internal benchmark has to be high in order to avoid putting the burden on your users. Consumers know when they’re being used rather than treated as partners or co creators in the process. An important aspect here is trust: Your community must trust that your business’s entire purpose is to solve a problem that affects their daily lives. That way, they’re helping you co create the product as you actively seek out and listen to their needs. If you’re committed to them, they’ll be committed to helping you achieve those goals. That partnership means building your product out in the open, involving a diverse community of users from the earliest stages. You can do that by sharing your designs or ideas on dedicated Slack channels, Twitter threads, or with selected groups of people, and ask that the community brainstorm new concepts with you and build on top of them. Allow for a continual, positive feedback iteration loop where users see the results each time and are let in on your thinking about why decisions were made. Accessibility isn’t an accessory. It’s not something that will just stay in place once you’ve made the initial effort to obtain it. It’s part of the machinery that keeps your business moving, and it needs constant maintenance. As your product grows and as your consumers’ behavior changes, new issues will surface constantly.

https://hbr.org/2021/11/4-common-ways-companies-alienate-people-with-disabilities

Justice News

The Justice Department today filed a lawsuit against Uber Technologies Inc. for charging “wait time” fees to passengers who, because of disability, need more time to enter a car. Uber’s policies and practices of charging wait time fees based on disability have harmed many passengers and potential passengers with disabilities throughout the country. The lawsuit, filed in the U. S. District Court for the Northern District of California, alleges that Uber violated Title III of the Americans with Disabilities Act , which prohibits discrimination by private transportation companies like Uber. In April 2016, Uber began charging passengers wait time fees in a number of cities, eventually expanding the policy nationwide. Wait time fees start two minutes after the Uber car arrives at the pickup location and are charged until the car begins its trip. The department’s complaint alleges that Uber violates the ADA by failing to reasonably modify its wait time fee policy for passengers who, because of disability, need more than two minutes to get in an Uber car. Passengers with disabilities may need additional time to enter a car for various reasons. A passenger may, for example, use a wheelchair or walker that needs to be broken down and stored in the car. Or a passenger who is blind may need additional time to safely walk from the pickup location to the car itself. The department’s lawsuit alleges that, even when Uber is aware that a passenger’s need for additional time is clearly disability based, Uber starts charging a wait time fee at the two minute mark. The lawsuit seeks relief from the court, including ordering Uber to stop discriminating against individuals with disabilities. Additionally, the department asks the court to order Uber to modify its wait time fee policy to comply with the ADA; train its staff and drivers on the ADA; pay money damages to people subjected to the illegal wait time fees, and pay a civil penalty to vindicate the public’s interest in eliminating disability discrimination. “People with disabilities deserve equal access to all areas of community life, including the private transportation services provided by companies like Uber,” said Assistant Attorney General Kristen Clarke for the Justice Department’s Civil Rights Division. “This lawsuit seeks to bring Uber into compliance with the mandate of the Americans with Disabilities Act while sending a powerful message that Uber cannot penalize passengers with disabilities simply because they need more time to get into a car. Uber and other companies that provide transportation services must ensure equal access for all people, including those with disabilities. ”Uber’s wait time fees take a significant toll on people with disabilities,” said Acting U. S. Attorney Stephanie M. Hinds for the Northern District of California. “Passengers with disabilities who need additional boarding time are entitled to access ridesharing services without discrimination. This lawsuit seeks to assist people with disabilities to live their lives with independence and dignity, as the ADA guarantees. ”

https://www.justice.gov/opa/pr/justice-department-sues-uber-overcharging-people-disabilities

Google Seeks Help From People With Speech Issues

Google is working on an app to help people with disabilities better communicate. Google wants to make it easier for people with disabilities that affect their speech to communicate with those around them and they’re looking for some help. The company has developed an app that’s able to decipher the speech patterns of those with impairments. The app known as Project Relate can be used to transcribe spoken words to text in real time and it can speak the words that a person has said using a computerized voice. It can also communicate with Google Assistant, which allows users to assign tasks to their smartphone and other devices using voice commands. Now Google is looking to test the technology in the real world. For millions of people, being able to speak and be understood can be difficult as a result of conditions that can impact speech, including stroke, ALS, cerebral palsy, traumatic brain injury or Parkinson’s disease,” wrote Julie Cattiau, product manager at Google AI in a posting about the effort. “Today, we’re inviting an initial group of people to test Project Relate, a new Android app that aims to help people with speech impairments communicate more easily with others and interact with the Google Assistant. ”English speaking people in the U. S. , Canada, Australia and New Zealand who have conditions that make their speech difficult to understand can sign up to be testers of the new app. Participants will be asked to record a series of specific phrases so that the app can learn their individual speech patterns, Google said. Then, they will be able to take advantage of the app’s features and offer feedback. “With your help, we hope to build a future in which people with disabilities can more easily communicate and be understood,” Cattiau wrote. This is not the first time that Google has sought voice samples from people with disabilities in order to improve its speech recognition technology. In 2019, the company worked with the Canadian Down Syndrome Society to collect speech samples from adults with Down syndrome to program its algorithm to better understand the unique speech patterns of those with the chromosomal disorder. That effort was associated with a broader Google initiative called Project Euphonia aimed at training computers to better understand individuals with speech impairments. With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services. In May 2021, 11 year old Ryan Larsen walked out of his elementary school in between classes. A year later, there are few signs of the boys whereabouts. Industry associations and business owners say serial plaintiffs are increasingly using the ADA to extract tens of thousands of dollars in settlements, not to promote access as the law intended.

https://www.disabilityscoop.com/2021/11/15/google-seeks-help-from-people-with-speech-issues/29595/

Apple’s iPad Gets Assistive Technology Boost

The TD Pilot from Tobii Dynavox is a certified Apple accessory that adds eye tracking technology to the iPad. Through a partnership with a venerable name in the world of assistive technology, people with disabilities can now control Apple’s iPad using nothing more than their eyes. Tobii Dynavox said this week that it is launching an add on device that will bring its eye tracking technology to the iPad. Known as the TD Pilot, the certified Apple accessory attaches to a standard iPad to seamlessly integrate eye tracking capabilities into all of the typical features of the tablet. In addition, TD Pilot includes TD Talk, an eye controlled app to generate speech, as well as TD Snap, which offers symbols for users to select in order to communicate. TD Pilot offers powerful speakers, an extended battery, an “ultra rugged design” and can be mounted to a wheelchair, Tobii Dynavox said. The eye gaze technology works even in bright light outside and there is a partner window on the backside of the device so that words written out using eye gaze can be seen by others a user is communicating with. “We are excited that people who need this technology will have the opportunity to control iPad using just their eyes,” said Sarah Herrlinger, Apple’s senior director of global accessibility policy and initiatives. “At Apple, we build foundational technology, including support for eye tracking, into our operating systems to make them accessible, and we’re thrilled that Tobii Dynavox’s TD Pilot is leveraging that to enable people with disabilities to pursue their passions. ”TD Pilot is a medically certified device meaning that it is available by prescription and can be paid for by health insurance. Tobii Dynavox has long offered its eye gaze technology through Windows compatible devices, but this is the company’s first foray into Apple products. Another company called Skyle also offers eye tracking for iPad. With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services. In May 2021, 11 year old Ryan Larsen walked out of his elementary school in between classes. A year later, there are few signs of the boys whereabouts. Industry associations and business owners say serial plaintiffs are increasingly using the ADA to extract tens of thousands of dollars in settlements, not to promote access as the law intended.

https://www.disabilityscoop.com/2021/11/18/apples-ipad-gets-assistive-technology-boost/29605/

One in 10 children worldwide live with disabilities

Nearly 240 million children worldwide, or one in 10, live with disabilities and experience deprivation in indicators such as health, education and protection, according to a new report released by the UN Children’s Fund  on Wednesday.  The agency’s Executive Director, Henrietta Fore, said the new research confirms what she already knew:?children with disabilities face multiple and often compounding challenges, in simply realizing their rights. “From access to education, to being read to at home; children with disabilities are less likely to be included or heard on almost every measure. All too often, children with disabilities are simply being left behind”, Mrs. Fore said. Nearly 240 million children with disabilities face challenges in getting access to basic needs including nutrition, health, access to clean water and sanitation, and education. Our latest report uncovers the hardship children with disabilities face around the world. Access to education is one of several key areas examined in the report.  Children with disabilities are 24 per cent less likely to receive early stimulation and responsive care, and have 42 per cent fewer chances of achieving foundational reading and numeracy skills.  The probability of never attending school is 49 per cent higher for them.  In health terms, they have 25 per cent greater chance of suffering from wasting, and 34 per cent greater chance of stunted development. They are also 53 per cent more likely to have symptoms of acute respiratory infection. These children are also 51 per cent more likely to feel unhappy day to day, and 41 per cent more likely to be discriminated against.  The probability of experiencing severe corporal punishment is 32 per cent greater than for children without disability.  According to the report, however, the disability experience varies greatly. There is a spectrum of risks and outcomes, depending on the type of disability; where the child lives; and what services they can access. Children who have difficulty communicating and caring for themselves are the most likely to be out of school, regardless of education level, explains the analysis. Out of school rates are higher among children with multiple disabilities, and?disparities become even more significant when the severity of the disability is taken into account.  Maria Alexandrova, 20, a UNICEF youth advocate for inclusive education from Bulgaria, said that “inclusive education cannot be considered a luxury. ” As a woman with disabilities, she says her experiences show that, for far too long, “children with disabilities have been excluded from society in a way that no child ever should be. ” “No child, especially the most vulnerable, should have to fight for their basic human rights alone. We need governments, stakeholders and NGOs to ensure children with disabilities have equal, inclusive access to education”, Mrs.  Alexandrova said. With the new publication, UNICEF is calling on governments to provide?children with disabilities with equal opportunities.  Member States should also consult?persons with disabilities and consider the full range of disabilities, as well as the specific needs of children and their families, when providing inclusive services and equitable quality education. Stressing the importance of the new report, the UNICEF chief said that “exclusion is often the consequence of invisibility. ” “We have not had reliable data on the number of children with disabilities for the longest time. When we fail to count, consider and consult with these children, we are failing to help them reach their vast potential”, Mrs. Fore said. The report?includes data from 42 countries?and covers more than 60 indicators, from nutrition and health, to access to water and sanitation, protection from violence and exploitation, and education.  

https://news.un.org/en/story/2021/11/1105412

10 Things Everyone Should Know About People With Disabilities And Employment

What more is there to say, this later in October, about National Disability Employment Awareness Month, or NDEAM for short? It’s hard to come up with anything new to say about disability and employment. Millions of disabled Americans are looking for a good job, but can’t find one, no matter how good the economy might be. Lots of them have gone far out of their way to earn career credentials. Many have endured physical, mental, and financial hardships along the way that most people would never put up with themselves. Meanwhile, millions of other disabled people work hard every day, in low wage jobs and work programs. They and the work they do has value, but they aren’t treated or paid that way. Most people know this, at least vaguely, unless they are decades rather than years behind current understanding of disability issues. It’s hard to On the other hand, it’s relatively easy to exhort employers for the thousandth time to “hire the disabled,” extolling the supposed benefits of having disabled employees. So that’s what a lot of NDEAM seems to amount to. It’s a true and necessary message, but it feels insubstantial and inadequate. People with disabilities who are looking for work may find things like NDEAM superficially encouraging, but is it really much help? Does yet another annual round of corporate resolutions and seminars really amount to much in the way of better access and opportunity? It’s complicated, too. Claims about how hard working and reliable disabled people are, though in a way usually true, often feel like they might be counterproductive encouraging inflated expectations and even exploitation. Are we so desperate for “a chance” that we will literally do anything, for any small reward? Still, it’s always helpful to share practical tips ways that employers can actually make work more accessible and genuinely worthwhile for applicants and employees with disabilities. Maybe the best thing to do each October is go back to basics, and try to give the broadest possible audience as much basic information as possible on disability and employment. Before another disability employment month ends, it may help to review some of the things that disability employment experts and people with disabilities know pretty well already, but others, including some disabled people, might not be so clear about. 1. Rates of unemployment for people with disabilities are consistently very high much higher than for non disabled people. Raw numbers alone don’t tell the full story. We have to compare employment rates of disabled and non disabled people, in two distinct measures: True, the pandemic raised unemployment rates for everyone. However, its impact on employment was somewhat worse for disabled than for non disabled people. And the overall employment gap between disabled and non disabled people rarely changes by more than a percentage point or two either way. Even accounting for disabled people who aren’t looking for work because of their disabilities, paid work is just much harder to find than it is for people who aren’t disabled.  2. Disability rights laws like Title I of the Americans with Disabilities Act are designed to protect disabled people from workplace disability discrimination, and mandate accessibility and individual accommodations. But these regulations are hard to enforce. In most real life workplaces, the threat of an ADA discrimination lawsuit from a disabled applicant turned down for a job, or a disabled employee denied and accommodation just isn’t that significant. The ADA provides a valuable template for equal opportunity, but not as much protection as some might think. 3. The federal government and some states have numerical hiring goals in an effort to open up employment opportunities to people with disabilities in government. This provides a potentially strong incentive, but only for a fairly narrow segment of the workforce,

https://www.forbes.com/sites/andrewpulrang/2021/10/25/10-things-everyone-should-know-about-people-with-disabilities-and-employment/?sh=76ecdc68476e

Children With Disabilities Face Special Back-To-School Challenges

in the East Hollywood neighborhood of Los Angeles. The center is a free preschool for children who are blind or visually impaired. LOS ANGELES Christopher Manzo, a boy with curly brown hair and bright blue and yellow glasses, has lived a third of his five years at home because of the pandemic. And he is more than ready for kindergarten. Hand in hand with his mother, Martha Manzo, he walks into the Blind Children’s Center, a low rise building nestled among apartment complexes in East Hollywood. In the brightly colored hallway, filled with paintings of animals, Manzo kneels to hug Christopher before he scurries unsteadily to his cubby. “God take care of you and be with you,” she says. “And have fun. ”Born with congenital hydrocephalus that damaged his brain and left him with severely impaired vision, cognitive difficulties and a lack of coordination, Christopher hasn’t missed only school the past 18 months he’s missed out on a host of vital occupational, physical and language therapies, as well as socialization with other kids. At home, Christopher couldn’t look at a computer screen long enough to attend therapies or classes on Zoom, said Manzano, in an interview conducted in Spanish. “He would strain his eyes, look away, and his attention would falter,” she said. “He couldn’t devote the same attention as a kid without disabilities. ”Christopher “could have advanced much more” since the pandemic hit if he hadn’t missed so much school, said Manzano, who is 36 and has three other children, ages 12, 10 and 8, whom she also has had to guide through months of home schooling. Yet the return to school raises particular health issues for Christopher and other children with disabilities who are at increased risk for serious bouts of COVID 19, said his pediatrician at Children’s Hospital Los Angeles, Dr. Liza Mackintosh. Though he isn’t immunosuppressed, Christopher has trouble coughing up secretions, which leaves him vulnerable to lung and respiratory infections, she said. Compared with other adults in contact with children, his parents, teachers and therapists “have to be more vigilant about mask wearing, hand hygiene and social distancing,” she said. In short, Manzo was deeply worried about the threat of COVID 19 exposure Christopher faced at school. But it was a risk she felt he could no longer avoid, to get on with his life. Trying to learn from home was “really hard on him,” Manzo said. “He couldn’t understand why he couldn’t go to school or the park or to his therapies. ”“I know COVID is still among us, but I also can’t keep him at home like he’s a crystal bubble and protect him,” she said. “He needs contact with other kids and his teachers. ”The challenges faced by Christopher during the pandemic have been shared by many of the roughly 7 million U. S. children and young adults, ages 3 to 21, with special needs. Online platforms usually don’t work for them. For example, Christopher needs to feel Braille letters to read he can’t do that on a computer screen. Students with disabilities had “sort of this double hit where it was very hard to access school services and very challenging to continue to work on developing new skills,” said Dr. Irene Koolwijk, a specialist in developmental behavioral pediatrics at UCLA Health. It took a lot of preparation to get Christopher and the 40 or so other children attending the Blind Children’s Center back into the building of the private, infant to kindergarten school. All the children are blind or visually impaired, and most also have disorders ranging from autism and albinism to cerebral palsy and epilepsy. The school practices reverse mainstreaming, in which a few children with typical development share the classroom with children with disabilities.

https://www.disabilityscoop.com/2021/10/20/children-with-disabilities-face-special-back-to-school-challenges/29546/

Disability Employment Awareness Month shines light on practical research, outreach in School of Kinesiology

It’s not glamorous. In fact, this process is mostly excruciatingly hard work, filled with constant setbacks, day in and day out. Fortunately, there are people who specialize in this rebuilding process, and they are at Auburn University. Leading these efforts in Auburn’s School of Kinesiology are Jaimie Roper, assistant professor and director of the Locomotor and Movement Control Lab, and Melissa Pangelinan, associate professor and director of the Pediatric Movement and Physical Activity Lab and Abilities Unlimited. In their labs, the professors connect biomechanics and neuroscience to help those with disabilities and traumatic brain injuries find new function, capabilities and, ultimately, new lives. “My goal has always been to train students and work with populations where we can have the most impact,” Roper said. “Particularly people with movement issues. I want to discover how they can move better, faster and more efficiently. ”When I came to Auburn in 2015, I knew I didn’t want to just be in my office, doing research that a handful of people are going to read and benefit from,” Pangelinan said. “I wanted to be involved in community based research with people who need our help. ”In short, Pangelinan and Roper conduct research designed to help people where they are today. And they teach their students to do the same. School of Kinesiology graduate students Matt Beth, Cole Burton and Mary Grayson Nix know this firsthand. As an undergraduate at Iowa State University, Beth experienced a traumatic brain injury, or TBI, and subsequent physical disabilities after falling from a three story building. Burton was hit by a motorist outside of Birmingham while on an Auburn geology class field trip, and as a collegiate student athlete, Nix experienced a career ending concussion and head injury during a soccer game. Each of these students has a different story, background and experience but what unites them is the experience of a traumatic injury and loss, and subsequently, finding hope and healing as they rebuild their lives at Auburn. Matt BethBefore his fall, Beth was experiencing the very best of college life as the president of his fraternity, a regular on the Dean’s List and thriving with his friends and girlfriend. This all changed in 2016. Moving to Auburn represented a milestone in Beth’s recovery. His physical ailments include the inability to walk, talk or move his left arm or leg. He communicates by typing with one finger. But his disabilities haven’t limited his academic success. “After spending two years solely focused on my rehabilitation in the aftermath of my TBI, I came to live in Auburn with my dad and stepmom,” Beth said. “I then spent the next year disproving people who told me I could never return to college. ”He graduated Suma Cum Laude from Auburn in 2020 and then completed a master’s degree in exercise science in 2021. “My doctors told me that I would never finish my undergraduate degree,” he said. “During my undergraduate endeavors, I had Dr. Christopher Wilburn as a teacher. He took me under his wing and encouraged me to pursue graduate school. This was a defining moment for me because this was the first time since my TBI which happened four years earlier that someone outside of my family saw past my injury to see potential in me. ”Beth is now a graduate research assistant in Roper’s lab and pursuing a Ph. D. “I have already learned a great deal about movement disorders, neurodegenerative diseases and the connection between neuroscience and biomechanics from her and I am very much looking forward to learning more from her in the coming years,” he said. “I have also found myself applying the concepts to my own exercises to make them more useful to me. ”

https://ocm.auburn.edu/newsroom/news_articles/2021/10/061258-disability-employment-awareness-month.php

What Moves Some People With Disabilities To Be Disability Activists?

Most people with disabilities have to be advocates at some point. We have no choice. Some later adopt it as a calling, for ourselves and others like us. A few are inspired to commit to more long term and consequential disability activism with the potential to benefit thousands or millions of disabled people. Activism as a way of life offers unique and valuable rewards to the committed activist. It also wears us down, both physically and emotionally. This may be even more true in particular for disability activism. It’s one of the most common avenues for building a more liberating sense of self for people with disabilities. It also regularly chews disabled people up, leaving many of us exhausted, disappointed, and demoralized. We may end up more empowered and connected in some key ways, but at the same time worn out, cynical, and alienated in others. A wheelchair user can do all of the supposedly “right things” to get restaurants and stores in their area to install ramps and accessible restrooms. But years of good faith, polite but persistent advocacy may still fail to bring about anything but vague promises, mild regret, and only the most minor changes. Coalitions of both professional and grassroots disability organizations may fight for decades to expand home care and end institutionalization, but continue to run into political obstacles and public indifference or misunderstanding. Still, victories do happen. Individual advocates sometimes win the services, benefits, or accommodations they were initially denied. And organized disability activism does shift thinking and practices over time. Occasionally it wins genuinely historic changes, like passage of the Americans with Disabilities Act. Outspoken disability advocates and activists are sometimes portrayed and secretly viewed as obsessive cranks or bitter, angry malcontents. We are never satisfied! We nitpick unimportant details! We let our rage overrule good sense! Maybe worse than all of this, our intense focus on seemingly narrow issues makes us boring! Or, so goes the familiar narrative. At the same time, strong advocates and activists are often admired, at least in theory. We know that social progress is almost always driven by activists, by people who are dissatisfied with the way things are and willing to devote themselves to changes that few other people seem to care about. And successful advocacy is almost always praised, at least for a time.  Disability activism is also supposed to be, among many other things, a community. It’s one of the few venues where disabled people collaborate, communicate, and socialize. So while the purpose of disability activism isn’t to make us feel connected and supported, at it’s best, activism can give us community. Unfortunately, this is often an ill defined and elusive goal. Activism doesn’t always breed kindness. And fighting for disability rights and justice doesn’t guarantee that the fight itself will always be fair, inclusive, or nurturing to those carrying it out. A great many disabled people find in disability activism an enduring community and true acceptance for the first time in their lives. But just as many find burnout, backbiting, and surprising flavors of intersecting prejudice in a movement whose purposes are supposed to be the opposite of these things. Disability activism can be incredibly rewarding. It can also break your heart. So why do disabled people become disability activists? It’s a question worth exploring. Practical ReasonsMany of us first become disability activists because they have to:For those of us born with disabilities, it often begins with our parents being forced to fight for an equal, integrated education. Later, we ourselves start tangling with programs, services, and benefits that are supposed to help us, but are often too difficult to obtain, and then too restrictive to allow personal growth and self sufficiency. Eventually, we experience the everyday grind of asking for accommodations and assertively insisting on opportunities, because if we don’t we won’t get anywhere, or even perhaps survive.

https://www.forbes.com/sites/andrewpulrang/2021/09/14/what-moves-some-people-with-disabilities-to-be-disability-activists/?sh=37f6894b5393

Amanda Cachia

“The politics of creative access: Guidelines for a critical dis/ability curatorial practice,” Interdisciplinary Approaches to Disability Looking Towards the Future, Volume 2, Edited by Katie Ellis, Rosemarie Garland Thomson, Mike Kent, Rachel Robertson, Routledge: New York, 2019. How can a deep engagement with disability studies change our understanding of sociology, literary studies, gender studies, aesthetics, bioethics, social work, law, education, or history?Interdisciplinary Approaches to Disability identifies both the practical and theoretical implications of such an interdisciplinary dialogue and challenges people in disability studies as well as other disciplinary fields to critically reflect on their professional praxis in terms of theory, practice, and methods.  Topics covered include interdisciplinary outlooks ranging from media studies, games studies, education, performance, history and curation through to theology and immunology. Perspectives are drawn from different regions from the European Union to the Global South with chapters that draw on a range of different national backgrounds. Our contributors who write as either disabled people or allies do not proceed from a singular approach to disability, often reflecting different or even opposing positions. The collection features contributions from both established and new voices in international disability studies outlining their own visions for the future of the field.

http://amandacachia.com/writing/politics-creative-access-guidelines-critical-disability-curatorial-practice/

Disabled Afghans in special jeopardy, warns exiled campaigner

After her flight from the Taliban, blind activist Benafsha Yaqoobi says fellow vulnerable compatriots are in danger World leaders must act to protect disabled Afghans who are in immediate danger under Taliban rule, a prominent blind human rights activist has urged after being evacuated to the UK. Benafsha Yaqoobi, a commissioner at the Afghanistan Independent Human Rights Commission , said she fears the Taliban will neglect and discriminate against people with disabilities due to the belief, held by many in the country, that disability is a punishment from God for the sins of parents. Speaking to the Guardian, Yaqoobi said: “I want from the UK and EU to please, please, create a special visa for women whose lives are in danger, people with disabilities whose lives are in danger. “There are millions of people with disabilities there without any support, without food, without clothes, without education, without any basic human rights. We must raise their voices. ”After a distressing journey to Kabul airport, Yaqoobi was evacuated by the Danish and traveled to the UK where she has spent the past 10 days in quarantine in a London hotel, and said she plans to contact activist Malala Yousafzai to discuss ways they could work together to help those suffering under the Taliban. “I am scared the plight of the Afghan people will fade from the news. People with disabilities and women need help, people will die,” she said. Yaqoobi and her husband, Mahdi Salami, who are both blind, were guided to Kabul airport by an assistant who is now in hiding in the country. She said they were beaten and pepper sprayed during their three attempts to flee, and when she heard gunfire she feared her husband and assistant had been killed. “It was really traumatic as a person with visual impairment. When they were shooting, they were shooting into the air, but I didn’t understand,” she said. “I was crying too much. It was really difficult for me and I couldn’t control myself, I screamed. ”She said there were children falling over and being trampled and injured outside the airport gates, where she and he husband were repeatedly pushed back. On their third attempt to escape, they were rescued under darkness after waiting for five hours in a remote location. Yaqoobi believed she would be killed by the Taliban if she didn’t flee the country as a woman in a prominent position. She was often recognized in the street, and gave an hour long TV interview just four days before Kabul fell. “I was very scared because I was so well known. I covered my face with sunglasses and a mask, and went out the house to see if I would be recognized. When I got a taxi the driver said he knew me and had seen me on TV last week,” she said. “I felt I could be introduced to the Taliban very easily. ”Yaqoobi has served on the AIHRC since 2019, and along with her husband founded the Rahyab Organisation to provide education and rehabilitation training for blind Afghans. Since taking power in Afghanistan last month, the Taliban has sought to assure the population it will respect the rights of women and minorities, and will not return to the brutal regime it implemented during the 90s when the group was last in control. However, these assertions have been met with doubt by many and there have been reports of human rights abuses in the country. “We will see in the future whether it happens. But the important issue for me now is people are dying, they’re starving and trying to leave,” said Yaqoobi, adding she hopes one day it may be safe for her to return to her home country. “I don’t have anything now. But I have a big hope. Although I was forced from my nation, they will not take it from my heart for ever. ”

https://www.theguardian.com/world/2021/sep/06/disabled-afghans-in-special-jeopardy-warns-exiled-campaigner

School policing falls hardest on Black students and those with disabilities, study shows

A school safety officer removed a third grader from class, took him to a staff bathroom, closed the door and berated him, telling the frightened child to “stop crying like a little girl. ”His crime? Refusing to leave art class after an argument with another student at their northeast Philadelphia elementary school. In the aftermath of the incident in 2017, Philadelphia schools issued a statement acknowledging it was not handled correctly. But a charged encounter with an officer in school is far from rare. Nationally, students were referred to law enforcement nearly 230,000 times during the 2017 18 school year, exemplifying why demands to restrict policing at schools are growing. “You’ve got some police officers that just can’t help themselves,” said the child’s father, Isaac Gardner. “You’re taking a little elementary school child in the bathroom. You ain’t supposed to be doing that. ”A Center for Public Integrity analysis of U. S. Department of Education data found that school policing disproportionately affects students with disabilities, Black children and, in some states, Native American and Latino children. Nationwide, Black students, such as Gardner’s son, and students with disabilities were referred to law enforcement at nearly twice their share of the overall student population. Schools in some states are far more likely than others to refer students to law enforcement, regardless of their race and disability status. New Hampshire, Pennsylvania, Virginia and Wisconsin schools did so at rates at least twice the national average. The repercussions ripple through communities in urban, suburban and rural areas alike. Lancaster County Public Schools, a three school district in remote eastern Virginia, had a referral rate 17 times the national average.  In Philadelphia, one of the nation’s 20 largest school districts, the referral rate for all students was seven times the national average. Thirty one states, as well as the District of Columbia, referred Black students to law enforcement at more than twice the rate of white students, the Public Integrity analysis found. These sharp disparities come despite years of mounting pressure on schools to stop policing kids. “They’re criminalizing some ordinary behavior of students, and they’re certainly disproportionately referring students of color to the juvenile justice system rather than disciplining them at school,” said Maura McInerney, legal director at the Education Law Center, a Pennsylvania legal advocacy group. In 2017, a national study at the University of California, Irvine, found that on campus arrest rates for children younger than 15 increased in areas where the federal government made grant money available in 1999 for school resource officers – a response to the mass shooting at Columbine High School. The funding was available whether a district struggled with crime or not, which helped researchers tease out the impact. Nationwide, roughly a quarter of law enforcement referrals lead to arrests, federal data shows. Students may be issued citations that require them to appear before judges or other juvenile court system officials. The federal data doesn’t specify what the referral was for, nor the result. In 2019, a Vermont student with a disability that causes bone pain was forcefully subdued by a school resource officer after educators suspected, erroneously, that the 17 year old had a vape. The officer demanded to search his backpack. The boy objected, using foul language, and the officer told him that he was “acting retarded. ” The officer pushed the student to the floor, arresting and handcuffing him and leaving him with bloody knuckles and bruised wrists. Should we defund school police? Teacher is torn about how to keep kids safe.

https://www.usatoday.com/story/news/investigations/2021/09/08/police-schools-black-and-disabled-children-face-harsher-discipline/5436023001/

Cross-Disability Solidarity: Shannon Finnegan and Bojana Coklyat Interviewed by Amelia Rina

A project for resource sharing, discussion, and collaboration about creative approaches to image description. In 2020, Instagram users uploaded 347,222 stories every minute. In those sixty seconds, Facebook users uploaded 147,000 photos, and Zoom hosted 208,333 participants in virtual meetings. After a year of mostly interacting with people through mediated digital encounters like video chat, social media, and email, companies of all sizes are failing to adequately consider their users needs and experiences. Imagine having someone read an article to you, and when she got to an image, she provided a description like: “Still from SOPHIE’s 2018 video Faceshopping, directed by SOPHIE and Aaron Chan,” “House On Cannonball Street Rachelle Dang2,” “At the Shed, people who came for a concert by Kelsey Lu avoided the lobby and entered from doors leading directly into the McCourt space,” or simply “Pierre Seinturier. ” These are alt texts taken from articles published in Artforum, BOMB, and the New York Times. Other magazines didn’t have alt text embedded in their images at all. Though the institutionalized art world has long perpetuated an ocular centric model, art, like the human experience it tries to describe, engages all our senses. Artists Shannon Finnegan and Bojana Coklyat have been working toward a more thoughtful and inclusive internet by demonstrating the beauty and accessibility of describing images. In their book, Alt Text as Poetry, and throughout their online resources, workshops, and broader ecosystem under the same name, Finnegan and Coklyat educate and inspire their audiences to see web accessibility as a creative opportunity, not an onerous obligation. Amelia Rina Amelia Rina Can you explain what alt text is and how it’s used by blind and low vision people?Shannon Finnegan Alt text is a written description of an image posted online. Alt text can also be added to images in digital documents . When done well, alt text is a way for people who are blind, have low vision, or certain cognitive disabilities to access an image. It’s also important for people with low bandwidth internet connections. To understand alt text, it is also helpful to understand screen readers, which is software that people can use to access digital displays. The screen reader outputs the text on the screen to a synthetic voice or digital braille display. For example, on a website, a screen reader might readout options in the navigation bar, followed by the title, the first paragraph, the second paragraph, etc. When a screen reader encounters an image, it’s unable to “read” it. So instead, it looks for the alt text an associated description of the image, embedded in the code. This is how alt text functions as a non visual alternative to an image. AR When websites aren’t accessible, how does that affect the online experience of people with disabilities? Bojana Coklyat It makes them feel like they don’t belong. People may think that the internet is a great equalizer, but for me, as someone who lives with low vision, I often feel left out of social media due to images that are not described. We miss out on events and the camaraderie that exists when sharing images online.  Overall, it can be overall less enjoyable and lead to a lack of the sense of connection that virtual spaces are meant to encourage. Feeling connected online is especially important to many people during the pandemic. When I first learned we were approached to do an interview with BOMB, I went to their website to see how accessible it was. I found that it was difficult to navigate it with my screen reader and that most images didn’t have alt text beyond captions. This kind of discrimination unfortunately exists on many art websites, despite disabled people continuing to push for more accessible websites in the art world. We hope participating in this interview will impact how art publications and organizations make their websites more accessible.

https://bombmagazine.org/articles/bojana-coklyat-and-shannon-finnegan-interviewed/

A call to action for international sport to embrace disability inclusion

Across international sport federations, disability is often missing from non discrimination statements and policies it is time to change that. At a time when diversity and inclusion are hot topics, the 15% who have a disability want effective change to remove the inequality and inactivity. To end discrimination and transform the lives of the world’s 1. 2 billion persons with disabilities so they can be visible and active members of an inclusive society. Put persons with disabilities at the heart of the diversity and inclusion agenda. It has been energizing to see the global Wethe15 campaign, launched just prior to the opening of the Tokyo Paralympic Games, lighting up global landmarks in the color purple, and raising awareness for disability inclusion in communities and societies around the world. While this symbolic support is a good starting point, what does this mean in terms of taking meaningful concrete action for disability inclusion within international sport? Hopefully Wethe15 can signal to the global community that disability inclusion applies to the world of sport. Across international sport federations , disability is often missing from non discrimination, diversity, and inclusion statements and policies. Wethe15 has the potential to serve as a catalyst for international sport to ensure that disability is stated as part of the fabric of all non discrimination, diversity, and inclusion initiatives.  For the Wethe15 campaign to be fully effective and meaningful, it needs to garner support and leadership from all international sport governing bodies. The UN Human Rights report on physical activity and sports, under article 30 of the Convention on the Rights of Persons with Disabilities, states in point 78, “Local, national and international organizations involved in sport, recreation and physical activity should commit to the full inclusion of persons with disabilities, and those that have already committed to human rights and non discrimination overall must be sure to explicitly include persons with disabilities. ”A sample of current non discrimination statements from 10 international sport federations and the International Olympic Committee makes it clear, however, that disability is still not explicitly recognized in many of these statements. World ArcheryNot allow any form of discrimination in its actions or decisions, be it discrimination of any kind such as race, color, sex, sexual orientation, language, religion, political or other opinion, national or social origin, property, birth or other status. World Athletics Preserve the right of every individual to participate in Athletics as a sport, without unlawful discrimination of any kind undertaken in the spirit of friendship, solidarity and fair play. IIHF Ice Hockey The IIHF does not permit discrimination against a private person or group of people on account of race; skin color; ethnic, national or social origin; gender, gender expression or gender identity; physical and mental disability; language; religion; political associations; birth or other status; sexual orientation or any other reason. FIE Fencing To ensure that the principle of non discrimination on the grounds of race, sex, ethnicity, religion, political opinions, family status or other, is respected. FIFA Football Discrimination of any kind against a country, private person or group of people on account of race, skin color, ethnic, national or social origin, gender, disability, language, religion, political opinion or any other opinion, wealth, birth or any other status, sexual orientation or any other reason is strictly prohibited and punishable by suspension or expulsion. World RugbyTo prevent discrimination of any kind against a country, private person or groups of people on account of ethnic origin, gender, language, religion, politics or any other reason.

https://www.sportanddev.org/en/article/news/call-action-international-sport-embrace-disability-inclusion

30 Days of MD: Seeing Disability Through a Different Lens

This is Matt DeEmilio’s story: My name is Matt DeEmilio. I’m 27 years old, and I am the coordinator for disability support services at Coastal Carolina Community College in North Carolina. My job entails granting reasonable accommodations for equal access, raising awareness of all disabilities, and training faculty and staff in areas of accessibility. Many individuals come into my office afraid of the next person who will judge them or put them in a box. In society, we categorize disabilities by what we think others can do and yet haven’t spent a day in their shoes. Let’s take a look through a different lens. Has anyone parked in a handicapped parking spot? I’m sure we are all guilty of it but we just created a barrier. We create barriers all the time without thinking about it, but we can make changes if we’re willing to listen. I’m not an individual who has muscular dystrophy, but I know what it is. I’m not a person who experiences many barriers compared with others with MD, but I’m here to listen. Finally, I’m not a person to create a stigma about your diagnosis, but I’m here to help advocate. I had the pleasure of doing an ableism workshop with Dani Liptak from Muscular Dystrophy News. This workshop was for faculty and staff to understand the importance of how to approach individuals with disabilities, what ableism is, and the stigma of inspiration. It helps to understand the importance of not asking an individual with any disability about their “battles,” how great it was that they were able to wake up, or how blessed they are because they can make their own breakfast. Does it bother you if a person struggles to get into a bathroom? Or if their wheelchair doesn’t fit through the door? Maybe it does and maybe it doesn’t. For me, I’m bothered by it even if it isn’t my family member or friend. Every individual should have the same access as everyone else. I truly believe that all individuals were put on this earth for a reason. Individuals with disabilities can be great parents, siblings, role models, administrators, advocates, and much more. Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September.

https://musculardystrophynews.com/2021/09/02/30-days-of-md-seeing-disability-through-a-different-lens/

Disney Making Changes To Disability Access At Theme Parks

A masked family walks past Cinderella Castle in the Magic Kingdom at Walt Disney World in Lake Buena Vista, Fla. Big changes are coming once again to Disney’s system for providing accommodations to people with disabilities at its theme parks. The company said this month that it is “making some enhancements” to what’s known as the Disability Access Service, or DAS, program. The move comes nearly eight years after a revamp of Disney’s access policies that prompted lawsuits from families of those with developmental disabilities. The Disability Access Service program allows people with disabilities who have trouble tolerating long waits to obtain a return time for rides and other attractions so that they do not have to physically remain in a line. Visitors have had to wait until arriving at Disney World or Disneyland to seek the accommodations. However, with the changes rolling out this fall, Disney says that people will be able to enroll up to 30 days before their arrival through a live video chat with a cast member. At that time, individuals will also be able to select two experiences per day through the DAS Advance planning option and they will get a one hour return window for those activities on the day of their visit. In addition, the Disability Access Service program will be tweaked to allow visitors to get a return time for rides and other experiences via an app rather than having to go to each attraction or a kiosk. The updates are part of a broader overhaul happening at Disney World and Disneyland this fall. The company is doing away with its FastPass system, a free offering that allows visitors to skip the line for a limited number of attractions, in favor of a fee based model. Disney is also launching a digital tool called Disney Genie that’s designed to offer a personalized itinerary complete with current and expected wait times for attractions. Disney made major changes to its disability access system in 2013. Previously, theme park visitors with disabilities were able to receive a Guest Assistance Card that often allowed them to skip to the front of lines for rides. Disney said it ended that option because it was “abused and exploited. ”The Disability Access Service was implemented in its place. That led to lawsuits from dozens of families of children with autism and other disabilities who claimed that the more restricted access was a violation of their rights under the Americans with Disabilities Act. The first of the lawsuits went to trial last year and a federal judge ruled in favor of Disney. With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services. In May 2021, 11 year old Ryan Larsen walked out of his elementary school in between classes. A year later, there are few signs of the boys whereabouts. Industry associations and business owners say serial plaintiffs are increasingly using the ADA to extract tens of thousands of dollars in settlements, not to promote access as the law intended.

https://www.disabilityscoop.com/2021/08/24/disney-making-changes-to-disability-access-at-theme-parks/29460/

WeThe15: Disabled Community Skeptical of New Disability Awareness Campaign

Rachel Charlton Dailey is a health and disability journalist. They serve as editor in chief of The Unwritten, a platform for the stories of disabled people. Their work features in publications such as Healthline, Huffpost, Metro UK, The Guardian, and Business Insider. Angela Underwoods extensive local, state, and federal healthcare and environmental news coverage includes 911 first responder compensation policy to the Ciba Geigy water contamination case in Toms River, NJ. Her additional health related coverage includes death and dying, skin care, and autism spectrum disorder. WeThe15 To coincide with disabled people from around the world gathering for the Tokyo Paralympic Games this week, the International Paralympic Committee and International Disability Alliance have launched the biggest ever human rights movement for disabled people. The campaign, called WeThe15, was launched ahead of the Games on August 19. The name is a nod to the 15% of the worlds population that is disabled. The goal of the WeThe15 campaign is to end discrimination toward disabled people and to publicly campaign for disability visibility, accessibility, and inclusion. The campaign will start by focusing on Paralympic athletes but will expand to promoting equity for disabled people from across disciplines from sports and business to arts and entertainment for the next 10 years. This year, in light of the pandemic, the organizers are concentrating on COVID 19 vaccine access for disabled people. While the goal is admirable, many disabled people do not expect the campaign to bring about meaningful change. Branded badges and social media hashtags make it easy for people and companies to make a show of supporting disabled people, but some experts predict that their support will be empty. Companies ought to commit to real change, Dr. Amy Simmons, a doctor of sociology in disability studies and currently a research assistant at the University of Kent, tells Verywell. If a company edits their logo to include a patch of purple [from the campaign], but their actions do not indicate any commitment to change, their involvement in WeThe15 only serves to boost their moral capital and sales. The IPC, the Special Olympics, the Invictus Games Foundation, and the International Committee of Sports for the Deaf have teamed up for the first time for WeThe15. A major part of their Paralympic strategy is promoting the role of assistive technology in improving accessibility and inclusivity for disabled people. In a statement, IPC President Andrew Parsons said that by partnering with Special Olympics, Invictus Games, and Deaflympics, there will be at least one major international sport event for persons with disabilities to showcase WeThe15 each year between now and 2030. Parson added that sports events, in particular, add great value to the campaign and underline the hugely positive impact sport can have on society, and that they strongly believe WeThe15 could be a real game changer for persons with disabilities. ” A 90 second video detailing the realities of disabled life aired during the Opening Ceremony of the Paralympic Games, reaching an estimated global audience of 250 million people. A host of organizations from across the globe will be supporting WeThe15 alongside the aforementioned athletic groups, including the Internal Disability Alliance, United Nations Educational, Scientific and Cultural Organization , UN Human Rights, The European Commission, The Valuable 500, Global Citizen, and Global Disability Innovation Hub, among others. These organizations say they will work with governments, businesses, and the public over the next decade to initiate lasting change for disabled people. This includes taking steps to put disabled people at the heart of diversity and inclusion agendas.

https://www.verywellhealth.com/wethe15-disability-campaign-5198425

The pandemic's affect on students with disabilities

Ella Gipe is a 10 year old attending fifth grade at Shaull Elementary School in Cumberland County. She lives with down syndrome and mild autism. We did have the option to go virtual all year if we chose, but we decided not to, because she benefits much more with in person learning, her mom Lisa said.  Lisa also said that even with school in session, Ella still missed out on a number of therapies that were offered in school, pre pandemic. All those things went virtual last year so that was very trying, so we are so thankful we went back in person, she said. I mean, we made due, but it was very frustrating.  She isnt alone. A May 2020 survey of nearly 1,600 parents by Advocacy group ParentsTogether, found that only 20% of respondents said their children were receiving some special education services and 39% reported receiving no services at all. By summer 2020, a larger poll showed more than 80,000 secondary and upper elementary students with disabilities may have also been facing more mental health challenges than their peers. In fall 2020, several school districts reported sharp spikes in the number of their students with disabilities failing their classes. Sherri Landis works with ARC of PA, a nonprofit which helps people with disabilities. She says connecting families with support and resources has been very limited due to COVID 19. We have our concerns, she said. I mean, it is difficult for the districts, and its extremely difficult for the individual families receiving care. The biggest problem, she says, is a lack of paraprofessionals, or trained aids that assist teachers in classes. The school districts are experiencing the same shortages as many other businesses and industries in the state, she explained. We need paraprofessionals. We need special education teachers. There was a special education shortage before the pandemic and this has just made it worse.  Luckily for the Gipes, they havent felt that pinch in the Cumberland Valley School District. Im thankful we are in the district that we are in, because they recognized the importance of in school learning, not just for children with developmental disabilities like Ella, but all kids, especially elementary school.  Landis admits not everyone has been as lucky as Ella and theres a lot of ground that needs to be made up.  The school districts understand that this is a population of students that really need that extra support and so were hoping that they work with the families in order to get that for all the students, she said

https://www.fox43.com/article/news/education/students-disabilities-pandemic-education-local/521-5af76b6f-56e0-4d88-afc5-e401a0e41586

Politics K-12

Despite the challenges presented by the COVID 19 pandemic, schools must meet their obligations under federal law to identify and serve children with disabilities, the Education Department said in new guidance Tuesday. “Regardless of the COVID 19 pandemic, or the mode of instruction,” children with disabilities are entitled to a free and appropriate public education, the U. S. Department of Education’s office of special education and rehabilitative services wrote in a letter to state and local educational administrators. The attached guidance document focused on Child Find, a portion of the federal Individuals with Disabilities Education Act that outlines states’ obligations to identify, locate and evaluate all children with disabilities, even those younger than school age and those who do not attend public schools. Among other things, the guidance notes that schools may use federal COVID 19 relief funding provided through the American Rescue Plan to help address a backlog of evaluations. And schools may need to make extra efforts to locate and identify children who didn’t enroll in the 2020 21 school year to ensure their needs are addressed. In addition, children with “long COVID” or prolonged post COVID side effects “such as fatigue, mood changes, or difficulty concentrating” may qualify for special education services if those conditions adversely affect their ability to participate and learn, the guidance says. The document is the first in a series of Q&A documents the Education Department plans to release on special education in the coming weeks, Katherine Neas, acting assistant secretary of the office of special education and rehabilitative services, wrote. Other documents will cover topics like evaluation, reevaluation, meeting timelines, and providing services, she said. Advocates say the pandemic has been particularly challenging for students with disabilities as schools strained to provide appropriate services and accommodations during remote learning. They’ve also cautioned that interruptions to in person learning have given educators fewer opportunities to recognize potential learning disabilities and have led to a backlog in special education evaluations in some districts. The Education Department’s guidance acknowledges these challenges, and prods schools to act. “Generally, children who attend virtual schools or, as experienced during the pandemic, receive instruction virtually, do not have the same degree of face to face interactions and in person contacts with a teacher or other school staff as children who attend brick and mortar schools on a full time basis,” the document says. “As such, teachers of these students have limited opportunity for casual observation of a child’s learning abilities and early recognition of issues that may impact their learning. ”In that case, schools should ensure they are relying on more than teacher observations to identify students who may need services, the guidance says.

https://www.edweek.org/teaching-learning/schools-must-identify-students-with-disabilities-despite-pandemic-hurdles-ed-dept-says/2021/08

RJI

Mizzou Logo If teens on TikTok can add captions to videos, you can, tooDisability. Just say the word already.  For an industry that seeks to deliver factual information to communities while avoiding euphemism, journalists have a bad habit of falling back on imprecision when discussing topics that are unfamiliar or make us uncomfortable. “Special needs,” “handicapped” and “differently abled”  all ableist phrases that classify an entire class of people as “less than” and fail to accurately convey meaning.  More than 6 million Americans live with a disability. The disability community is a spectrum of experiences that a single word will never fully capture. But recent updates to the Associated Press Stylebook are a necessary change and a good first step for every newsroom: When possible, ask people how they want to be described. Some people view their disability as central to their identity, and use identity first language such as an autistic woman or an autistic. Others prefer person first language such as a woman with autism or a woman who has autism. In describing groups of people, or when individual preferences can’t be determined, use person first language. The journalism industry’s past resistance to simply saying the word “disabled” in coverage is the tip of the iceberg. Journalists cannot begin to represent a group of people if you cannot find the wherewithal to use language that respectfully and accurately describes who they are.  It is time to move beyond updates to the style guide.  When was the last time that you wrote or edited a story that quoted a person with a disability and was not a health or science story? How about the last time you read a news story that centered on people with disabilities? If you haven’t included perspectives from the disability community in your coverage during the last 19 pandemic months, you are failing. Healthcare, education, business, politics, entertainment, labor rights, transportation  every beat is a disability beat.  And the full effects of the coronavirus pandemic are not yet known. Long COVID is very real and the Biden administration says Americans who are diagnosed will be covered under the Americans with Disabilities Act. We are looking at thousands of people around the world who will be officially counted as members of the disability community. And being counted has real life consequences.  Identifying as disabled, which I do as someone living with Crohn’s disease, gives a person real power and protections under U. S. law. And the accommodations secured under the ADA do not only apply to people born with disabilities, but to those experiencing temporary disability or recovering from illness.  When journalists are ashamed, afraid or inconvenienced by accurately reporting on the disability community, we cause harm by minimizing the power that comes with identifying as disabled.  Just as representing disability in our coverage is critical, so is hiring and supporting journalists with disabilities. Ensure that disability is included in your diversity and inclusion conversations. Those annual employee engagement surveys you ask staffers to complete so you can report out diversity numbers? Include an option for employees to identify as a person with a disability.  My diagnosis six years ago has made me a better journalist and has entirely shaped who I am as a newsroom leader. My body has forced me to practice work life chemistry for myself and for the teams I manage. I’ve learned to be an advocate for communities I cover and a more empathetic listener to the needs of our audiences. Empathy and listening are key pillars of effective product design. Actively seeking out feedback from the disability community on how your news products should be accessed by people who require different accommodations will make your news products better for everyone.  

https://rjionline.org/news/is-disability-invisible-in-your-newsroom-its-beyond-time-to-fix-that/

Nasdaq’s Snub To Boardroom Disability Inclusion Initiative — A Missed Opportunity

Disabled Manager Sitting With His Work Colleagues Last week, the U. S. Securities and Exchange Commission placed its stamp of approval on a Nasdaq initiative that largely sidelines people with disabilities when it comes to boardroom diversity reporting. Arriving less than 2 weeks after the U. S. celebrated the 31st anniversary of the Americans with Disabilities Act , the development can be viewed as something of a kick in the teeth to campaigners, employees and jobseekers advocating for greater workplace disability inclusion. Under proposed rule Release No. 34 90574, Nasdaq listed companies will be compelled to report on the composition of their boards of directors. This entails a requirement that organizations have two diverse directors, including one identifying as female and another as an underrepresented minority, or LGBTQ+, or they must explain why they do not. When it comes to this second category of forming part of an “underrepresented minority,” disability will not be considered as a qualifying criterion for this group. The announcement reaffirms the idea that, despite accounting for 20% of the world’s population, in 2021, disability continues to be viewed as workplace D&I’s poor relation. Prior to last week’s announcement, not only did disability organizations vigorously campaign and lobby Nasdaq and the SEC to include disability within the definition, they also received strong public support from the Leadership Council on Civil and Human Rights, the National LGBT Chamber of Commerce, the U. S. Black Chamber and Women Impacting Public Policy, in addition to others. In a press release, Disability:IN, a global player in driving disability inclusion and equality in business stated that it was “deeply disappointed” by the SEC’s stance. Ted Kennedy, Jr. , chairman of the American Association of People with Disabilities and Co Chair of the Disability Equality Index, a joint initiative by Disability:IN and the AAPD, further added, “Nasdaq sends the message to corporate America that people with disabilities don’t count in diversity metrics. ”Though principally a boardroom initiative, little doubt remains that diverse workplace culture is often sparked and sustained from the top down through determination and role modeling at the leadership level of an organization. In this context, a sense of widespread disappointment would appear apt as, particularly during a year when many have been revaluating traditional assumptions about how we work, the case for workplace disability inclusion as a business advantage would appear clearer than ever. Not only do employees with disabilities provide organizations with insights based on lived experience into a market worth over $8 trillion, but there are also the friends and family of disabled people to consider. Lest we forget, in a regular non pandemic year, people with disabilities dine out, travel and enjoy retail experiences and so goods and services with accessibility embeded bring in, not just people with disabilities, but their associates too. Disabled employees also possess creativity, originality and diverse perspectives to problem solving because life with a disability in an able bodied world is a full time exercise in problem solving. In some cases, certain neurodiverse employees can actually significantly outperform their neurotypical peers. Depending on the task at hand, some differently wired brains can achieve enhanced states of concentration, or may possess superior numeracy skills. The likes of Microsoft don’t run dedicated neurodiverse hiring programs as a cynical tick box exercise. The company views it as a tool to optimize a valuable resource. Why then, according to a report from the Return On Disability Group that mirrors the SEC and Nasdaq’s latest stance, do only 4% of companies run disability inclusion initiatives in contrast to 90% purporting to prioritize diversity overall?

https://www.forbes.com/sites/gusalexiou/2021/08/13/nasdaqs-snub-to-boardroom-disability-inclusion-initiative---a-missed-opportunity/?sh=7c8f25dfbdf9

Swimming superstar Ellie Cole on diversity, accessibility and bringing people joy

The six time gold medallist is campaigning for WeThe15 – a global human rights movement that will feature at the Tokyo 2020 ParalympicsEllie Cole is a bona fide Australian sporting champion. Yet as other women athletes, or sportspeople of colour or other minorities can attest, success is no shield sometimes. “You know, six years ago, I was working at a place and I was told that I was a ‘diversity hire,’” she tells Guardian Australia from a training camp in Cairns. The star swimmer believes the comment was made in jest. But she was disappointed. “And I think that’s when I really started asking myself questions about what’s happening outside of the sporting space,” she says. “Because as a prolific athlete, I do live in a bit of a bubble. What’s actually happening out there in the real world needs to be spoken about more. ”This article includes content provided by Instagram. We ask for your permission before anything is loaded, as they may be using cookies and other technologies. To view this content, click Allow and continue. On Thursday the International Paralympic Committee – along with dozens of other major organizations – will launch WeThe15, which they hope to be the world’s largest human rights movement. The 15 refers to the estimated 15% of people across the globe who have a disability. The lofty goal of the 10 year campaign, which will be a key feature of the Paralympics opening ceremony on 24 August, is to “act as a global movement publicly campaigning for disability visibility, accessibility and inclusion”. Organisers say the opening ceremony will embrace the inclusion agenda in an unashamed way that past games have not. The campaign is being launched with a slick 90 second film with a thought provoking message that boils down to: people with disabilities don’t need your pity, they deserve your respect. When Cole was asked by the International Paralympic Committee to take part in the campaign, she thought of her parents. “When they were told that I was going to have my leg amputated at three … their first response was that they felt this overwhelming sense of fear about what my future was going to be like,” Cole says. “They didn’t know anyone else who had a disability. ”As a child, Cole’s parents enrolled her in swimming to help with her rehabilitation. This week, at 29, she will head to Tokyo for her fourth Paralympics. Cole is the reigning champion in the 100m backstroke S9 and has 15 Paralympic medals to her name – six of them gold. To put that in perspective, Emma McKeon, Australia’s most successful Olympian after Tokyo, has 11 medals, five being gold. Cole has received an order of Australia and a striking photograph of her perched on the rocks at Wylie’s Baths in Coogee, prosthetic leg and Australian flag in the foreground, is among the collection at the National Portrait Gallery in Canberra. She first went to the Paralympics in Beijing aged 16. She recalls skipping maths class to watch Libby Trickett win gold in the 100m butterfly in the Olympics. The fact she would be competing at an equivalent meet weeks later didn’t dawn on her. “I didn’t even think, like, ‘I’m going to be over at this thing competing myself,’” she says. Her sense of what the Paralympics are has changed since then. And so has the public’s. Cole traces that shift in attitudes back to London 2012. She recalls seeing billboards depicting athletes with a disability as she made her way around the city. “I was walking down the street, and I was with a friend of mine who had no arms and no legs,” she says. “So he was walking on two prosthetic legs. And another friend of mine who had no legs, and another woman who was short statured, and I was thinking, like, ‘We are going to be a sight for sore eyes. It’s like a disability cocktail. ’“We didn’t get like a second look in the streets of London. I couldn’t believe that. I’d never been anywhere where that hasn’t happened before. ”

https://www.theguardian.com/sport/2021/aug/19/swimming-superstar-ellie-cole-on-diversity-accessibility-and-bringing-people-joy

Google Launches Program To Hire More People With Autism

Google is teaming up with Stanford University in an effort to make its workforce more neurodiverse. The technology giant said recently that it is launching a new program aimed at bringing more people with autism into its cloud workforce and supporting them better. With Google Cloud’s Autism Career Program, the company said that it will work with experts from the Stanford Neurodiversity Project part of the university’s medical school to train as many as 500 Google Cloud managers and others who are integral in the hiring process to work more effectively with candidates who have autism. Stanford will also help coach job applicants with autism and the support will continue if candidates are hired. In addition, there will be changes to the interview process for those who are part of the Autism Career Program in order to be more accommodating, according to Rob Enslin, president of global customer operations for Google Cloud. Candidates with autism may receive extra interview time, be offered questions in advance or be able to do their interview in writing. “These accommodations don’t give those candidates an unfair advantage,” Enslin said in a blog post about the new program. “It’s just the opposite: They remove an unfair disadvantage so candidates have a fair and equitable chance to compete for the job. ”Enslin cited statistics showing that just 29% of those with autism have paid employment, a situation he called “tragic” and one he said is in many cases the result of unconscious bias. “This bias often unintentionally marginalizes great candidates and means businesses miss out on valuable talent who can contribute and enrich the workplace,” Enslin said. “This program is just one example of Google Cloud’s commitment to inclusion, and it is an important step forward to building a more representative team and creating value for customers and stakeholders. ” With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services. In May 2021, 11 year old Ryan Larsen walked out of his elementary school in between classes. A year later, there are few signs of the boys whereabouts. Industry associations and business owners say serial plaintiffs are increasingly using the ADA to extract tens of thousands of dollars in settlements, not to promote access as the law intended.

https://www.disabilityscoop.com/2021/08/09/google-launches-program-to-hire-more-people-with-autism/29435/

BYU graduate writes, stars in film that explores disability

A film written by and starring a Brigham Young University graduate will make its way to a streaming service and potentially film festivals in the coming months. And it tells a story not often represented in film. Andrew Justvig, who was born with cerebral palsy, has long dreamed of making a career working for Disney. He wrote plays in his Master of Fine Arts program at UC Riverside, but I never set out to make a movie, Justvig said. The opportunity to see an award winning play he wrote, The Anxiety of Laughing, filmed for a new streaming service, the Disability News Report, fell into his lap, Justvig said. The plan was to film a stage production of the play to be directed by one of Justvigs former professors at UC Riverside, Robin Russin. But Russin discussed the project with his friend Michael Bulbenko, who is part of the production development team at Fujifilm and an expert cinematographer. Stage plays presented on film often dont turn out as well as one would hope, Russin noted. He said, Well, this doesnt make sense, we should just make a movie, Russin recalled. Bulbenko joined the project, as well. Part of it was that Fuji was drawn to Andrew just like everybody else is, they were excited by him and his story, and we decided, OK, lets make a movie, Russin said. The Anxiety of Laughing tells the story of a stand up comedian with cerebral palsy who is helping his fiancee who is abled deal with their challenges. It also explores the lead characters dynamic with his fiancees mother, who is hesitant about her daughters relationship, Justvig said. On a small budget and without the backing of traditional filmmaking platforms, they filmed last week at Justvigs in laws home while the in laws got sent on a vacation. Though they met the first day of filming, Justvig says he bonded with his co star, Brandi Robinson, who played his girlfriend, as they stayed at that home. It helped them play their roles despite having only met the first day of filming. Russin said the cast was so invested in the story that they just made it happen, completing the shoot in just five days. For me, weirdly enough, it was the easiest shoot Ive ever done, because everybody was just working like clockwork together and really paying attention, Russin said, explaining that hes worked on shows like Americas Most Wanted and various theater projects. Out of the five scripts hes written, this is the most important, Justvig said. I just hope they buckle up because it is funny, but its the truth, and sometimes truth is painful, Justvig advised potential viewers. Russin noted that often in movies that deal with disability, abled actors play disabled characters. But now, the film industry is coming to the understanding that authenticity matters in casting. And here, we actually have Andrew, who has cerebral palsy, playing the character of someone who has cerebral palsy. Theres authenticity to it that I think is different than the way disability has been shown before, Russin said. The script provides insights into not only what it means to be born with a disability but what its like to become disabled when you dont have that as part of your normal experience, Russin said. So this is a play that I think has a great deal to share with the abled community, and also with the disabled community. I think it speaks to both, because its a very realistic, gentle, loving, but not evasive look at what life is like for people who live with disability, he added. Justvig said he wanted to explore what it really means to be disabled. And I really wanted to show that in my own life, people dont see me and my wife when we are alone. The truth is, I do a lot of the cleaning, because my wife has a full time job, and now a baby. I really have become the go to partner, so thats kind of the background, he explained.

https://www.ksl.com/article/50222413/byu-graduate-writes-stars-in-film-that-explores-disability

New training, education urged for police interaction with students with disabilities

Research in the College of Education and Human Development aims to improve interactions between individuals with disabilities and police officers with national training program. Research in the College of Education and Human Development aims to improve interactions between individuals with disabilities and police officers with national training program. Research in the College of Education and Human Development aims to improve interactions between individuals with disabilities and police officers with national training program. Despite a myriad of programs and trainings across the country, individuals with disabilities who exhibit suspicious behavior, and may lack communication and social skills, could result in a police officer’s ability to appropriately respond to and handle calls – which may result in higher rates of excessive force and incarceration. Across their lifespan, people with disabilities are more likely than those without disabilities to come into contact with police, either as a victim or as a perpetrator of a crime – this includes students, according to a scientific article authored by Lindsay Diamond of the University of Nevada, Reno and published in the SAGE journal publication Intervention in School and Clinic. For years, policing and working with individuals with disabilities has been a topic of conversation in my household, Diamond, assistant professor of special education in the Educator Preparation program in the College of Education & Human Development, said. Having a husband who is an officer and many family members and friends who work for various agencies, I have always been interested in the interactions between police and individuals with disabilities. In the last five years, this interest area has grown due to the events portrayed in the media, and I realized it was time to take some action. I conducted a study across the state to determine what is happening in Nevada. Specifically, these publicized incidences across the country have raised concerns regarding an officer’s ability to appropriately respond to and de escalate situations involving a person with a disability. To address these concerns, researchers, including Diamond and her graduate student in the College of Education & Human Development, have sought to determine the perceptions of police officers toward people with disabilities, as these perceptions and biases will influence police officers’ ability to effectively respond to and handle calls for service. A police officer’s perceptions about people with disabilities are formed over time and often based on their personal life experience, on the job training and job experience. However, while some officers report a greater understanding of people with disabilities, the results of many officers’ actions highlight the inability to differentiate between someone with or without a disability. Diamond and her co author Lindsey Hogue, also in the Universitys special education academic program of the College of Education & Human Development, found that while there are many trainings throughout the country, the content, quality and mode of delivery is inconsistent across states, schools and law enforcement agencies. This variability calls for the need for a structured and systematic training approach for both students with disabilities and police, they concluded. Following the study on these interactions and how police and people with disabilities prepare for these interactions, Diamond and Hogue at the University of Nevada, Reno have proposed a two pronged training and education approach to prepare the two groups for more successful interactions. In their peer reviewed article, Preparing Students with Disabilities and Police for Successful Interactions published in February 2021, the authors present a general overview of the two pronged training approach.

https://www.unr.edu/nevada-today/news/2021/police-student-interaction

Rising senior offers insight on virtual classes, dealing with disability

One local disabled student said online classes have made things much easier for when she’s been hurting too much one day or stuck in the hospital. ALBANY As summer break comes to an end, students and teachers are preparing for the 2021 22 school year. After missing in school instruction for a year due the pandemic, students will fully be coming back to school with hope that life may be getting back to normal. With a new school year comes the elevation of new seniors. These students have worked hard throughout their school careers to get where they are. A Class of 2022 senior shares her thoughts of how the pandemic has forced schools to adapt education in a way that’s beneficial in more ways than previously thought. With a disability, learning and showing up to school can be more of a chore than many assume. With virtual classes, it’s easier to take a breather and not worry about how much pain you will be in simply walking from class to class. Students are now able to have all of their work and help from their teacher at the click of a button. This can eliminate extra challenges that can occur for those students with physical disabilities and those with mental health problems as well, which can cause a teenager to be less likely to speak out in front of a full classroom. The rising senior offered her thoughts on some questions about school in the age of COVID: How has the pandemic changed the way you see education? Did you learn better during the pandemic or before? The pandemic helped my education greatly as I was able to learn at my own pace, and I found that I worked much better online than I did in person. How have virtual classes helped you while dealing with a disability? Online classes have made things so much easier for when I’ve been hurting too much one day or stuck in the hospital. It’s helpful that I can still listen in directly to the teacher and still interact with my peers. Pre COVID, I had to spend half the day lying down due to crazy back and neck pain. Now, online school means I don’t have to miss as much, and I’m no longer constantly in pain. With a disability, what are some difficulties in classrooms that you don’t need to worry about online? It’s quite frustrating to see how many people don’t seem to understand how many accommodations a school has to make for students like me. I feel pretty much like an outsider at times. Many times I’ve had to ask for classroom layouts to be changed just so I can get in the room and move around in a wheelchair. It also sucks having to constantly sit in the front of the classroom. What do you think schools should do about online learning? While I believe that socialization is an important factor of a student’s mental health, I also believe that students that have medical needs should have the option to work online and have the same opportunities as their peers.

https://www.albanyherald.com/local/rising-senior-offers-insight-on-virtual-classes-dealing-with-disability/article_d4f98e56-f712-11eb-98fb-bb3d1d0bb74d.html

Joint Faculty Hire Spotlights Disability

Florida State’s creative writing program wanted one professor but hired two. The fact that they were both disabled was something of an afterthought, but the professors say the move matters  and follows years of activism on the part of disabled scholars. Florida State University’s English department was seeking a poet. The department was ultimately interested in two applicants: Jillian Weise and L. Lamar Wilson. Both happened to be disabled. And Florida State found the money to hire them both. Whether Florida State originally intended this to be a cluster hire in support of diversity and inclusion is immaterial to all involved, as that’s what it’s become anyway. In hiring two openly disabled scholars at the same time, in the same department, Florida State is raising awareness of scholars with disabilities and valuing their contributions. It’s also offering community to two scholars who are used to being the only disabled professor in the room. “For me, this is huge,” said Weise, an incoming associate professor of creative writing at Florida State who previously earned tenure at Clemson University. “This is like a foundational moment that is a credit, of course, to Florida State University. But it’s actually preceded by years and years of disability rights activism in higher ed. ”Disabled professors aren’t often spoken of, Weise said, much less held up to students as models of what professors and administrators can look like. This dynamic exists across fields. A recent federal report on academic scientists, for instance, found that 9 percent of scientists reported at least one disability, compared to about 11 percent of the general population. This doesn’t mean that all scientists disclose their disabilities in the classroom or to their colleagues, either, as some disabilities are less obvious than others. Ableism persists across academe. Within the field of creative writing, in particular, Weise said that disabled scholars continue to face hostility. “We dont need nondisabled people to exclusively tell our stories,” Weise said. “It’s time for a kind of revolution in creative writing, where disabled poets, memoirists, novelists, screenwriters, are not just accepted but invited and welcome. ” As for Florida State’s English department bringing on two disabled creative writers, Weise said, “No other creative writing program has done that. ”Weise, who was born disabled and refers to herself as a “cyborg” on account of her computerized prosthetic leg, is a longtime disability rights activist. Wilson, an assistant professor of creative writing who most recently taught at Wake Forest University, can’t quite say the same. He was born with Erb’s palsy, which affected the use of his left hand, but the culture in his family growing up was not to talk about it. He learned to play basketball, tennis and trumpet and, later, to type quickly for school and work. Wilson is otherwise outspoken, but again and again, he’s been rewarded professionally for making it easy for others to ignore his disability. This is something he’s trying to unlearn including from Weise, he said recently. “What I’ve appreciated about her friendship and … I would even go as far as to say mentorship, is that she’s not going to let me be left behind,” Wilson said of Weise, who is the more senior scholar and enters Florida State with tenure. “What she seems to be indicating to me is that we’re going to do this strategically, together. ”The pair recently submitted their office accommodation requests, for instance, and have discussed workplace climate. Weise was unable to move to Florida during the pandemic, while Wilson, whose family lives in Florida, has been teaching at Florida State online for a year already. Weise and Wilson, who previously worked together on a New York Times poetry installment by disabled writers, will both begin teaching on campus this fall.

https://www.insidehighered.com/news/2021/08/06/joint-faculty-hire-florida-state-spotlights-disability

Blind Oregonian competing in Paralympics works to bridge gap between mental health, disability

I loved sports growing up but visually couldnt really keep up with my sighted peers. BEND, Ore. Whats more important: winning a gold medal, completing a masters degree, or helping grow an international sport?If your name is Eliana Mason, the answer is all of the above, and the sport might be one youve never heard of, called goalball. Its the only Paralympic sport thats not an adaptation of a previous sport. It was designed after World War II for blinded veterans. Mason picked up the sport, and has made it a major part of her life.  She had her cataracts removed when she was just nine days old. Compared to a person with 20/20 vision, Mason needs objects to be 15 times closer to be able to see them.  But shes never let that bother her.  For Mason, adapting to your differences is the name of the game. Were athletes, were resilient, we face adversity in games all the time and so, how can we use this to our advantage?” Mason said.  And when shes playing goalball, everything else seems secondary. I love this sport so much,” Mason said. “It brings me so much joy, and I feel so empowered when Im on the court and just getting to be an athlete. Goalball is designed for those visually impaired. So I always joke that goalball is for blind athletes, but you have to visually see it to understand it,” Mason said.  Each player, with varying levels of visual impairment, wears vision blinding glasses. Mason and all goalball athletes can see nothing, relying on the sound of bells inside the ball and their athletic instinct. The three pound ball is thrown up to 40 miles an hour, attempting to make it past three defenders. The coaches and the fans can only celebrate after a goal, and have to stay completely silent otherwise.  Mason, a Beaverton native, discovered goalball when two Paralympians moved to Oregon, and changed her life forever. I loved sports growing up, but visually couldnt really keep up with my sighted peers, she said. So discovering a sport that was adaptive and meant for blind athletes was life changing for me. ”Nearly a decade later, shes set to compete in her second Paralympic Games, and add a gold medal to her trophy case, which includes a bronze medal from Rio. Josh Lucas works with Mason in goalball clinics through the nonprofit Angel City Sports.  She was a phenomenal player then, and shes only gotten better since,” Lucas said.  He coached against her when she was younger and said she was born to lead. Shes been that type of leader since she was young I could tell,” Lucas said. “Shes always been very calm. So it wasnt easy to coach against her, when you cant rattle her. Rattle her, you cannot. After the COVID 19 pandemic postponed the Olympics and Paralympics, Mason kept training for the Games, while taking classes for her masters degree in clinical mental health counseling. So I want to bridge that gap between mental health and disability and be someones individual, and come to and work with people who have lived experience and understanding of what it means to live life with a disability and bridge that gap,” Mason said. She said there are a lot of things misunderstood about the Paralympics. First off, a lot of people have never heard of them and thats just a huge area of education gap,” Mason said. And so I think people dont recognize if youre a Paralympic athlete, you train and work just as hard as an Olympic athlete. Mason wants both Paralympic athletes and all people with disabilities to be shown a little more understanding. I think a lot of people assume what you can or cannot do,” Mason said. “Instead of assuming what someone is capable of, ask them or let them tell you or let them show you. Lucas knows whether its on or off the court, Masons going to change the sport, and a lot of peoples lives. The impact she could make is immeasurable, Lucas said. We dont know where its going to go, but we need people just like her.

https://ktvz.com/sports/olympic-zone/2021/08/07/blind-oregonian-competing-in-paralympics-works-to-bridge-gap-between-mental-health-disability/

U.K. Government’s National Disability Strategy Receives Lukewarm Response

Close up Of A Hands Protecting Disabled Handicap IconThe U. K. Government’s long awaited National Disability Strategy, which was announced yesterday, has received a muted response from charities and other organizations representing the interests of the country’s 14. 1 million disabled people. The widespread consensus appears to be that the strategy, which covers a raft of policy areas from housing to employment and transportation, just about meets minimum expectations but appears to be somewhat lacking in substantive detail and imagination. The new proposals involve £1. 6 billion of funding centered around 100 policy commitments. The special educational needs sector is set to receive a cash boost of £300 million to create more places in special schools and improve existing provision. There will also be a renewed focus on building more accessible housing stock with 10% of homes built through the £11. 5 billion Affordable Homes Programme 2021 26 being allocated to supported housing. On the employment front, the Government has proposed a consultation on mandatory disability workforce reporting for businesses with over 250 staff and a new online hub for both employers and disabled employees offering advice on disability discrimination and flexible working. Plans will also be formalized to create more efficient passporting of workplace adjustments via the Access to Work scheme for those entering the workforce or moving between roles. Heralding the proposals as potentially transformational for disabled Britons, Prime Minister Boris Johnson said, “Just as our talented Paralympians are set to take the stage in Tokyo next month, at home we are harnessing that same ambition and spirit, to build a better and fairer life for all disabled people living in the U. K. ”Later continuing, “Our new National Disability Strategy is a clear plan – from giving disabled people the best start in school to unlocking equal job opportunities, this strategy sets us on a path to improve their everyday lives. ”However, Angela Rayner, the opposition Labour party’s Shadow Secretary of State for the Future of Work, who has a disabled son, told ITV News, This government has not gone far enough. “Unfortunately, I think many people who live with a disability have seen their standard of living decline under the Conservatives and this strategy does nothing to address those issues, she commented. It is a view echoed by CEO of Disability Rights UK Kamran Mallick who said, “The strategy has insufficient concrete measures to address the current inequalities that disabled people experience in living standards and life chances. ”Over the past 12 months, the Government’s disability strategy was underpinned by a survey with over 14,000 responses. However, right from the outset, the survey came under fire from U. K. DPOs or Disabled People’s Organizations for not being co designed alongside the disability community and being exclusionary as it was online only. There was criticism leveled at some of the questions, particularly those attempting to elicit whether non disabled respondents would consider entering into an intimate relationship with a person with a disability. Now that the strategy has been announced, there appears to be a widespread sense, as the country continues to emerge from the Covid 19 pandemic, that the metaphorical can is simply being kicked further down the road. Commenting on the strategy’s employment commitments, Steve Ingham CEO of global recruitment giant PageGroup and himself a wheelchair user says, “in March 2021, I co signed a letter to the Prime Minister urging for the introduction of mandatory reporting on the disability pay gap, as well as minimum thresholds for disabled staff in large companies. There is still a regulatory gap for disabilities, and business leaders frequently tell us that disability is too complex of an issue for them to grapple with, leading many to ignore it.

https://www.forbes.com/sites/gusalexiou/2021/07/29/uk-governments-national-disability-strategy-receives-lukewarm-response/?sh=12518e3e3eb9

Disability rights activists speak out about the plan to return to ‘normal’ in the fall

Davis, CaliforniaThe Disability Rights Advocacy Committee and UC Access Now are putting pressure on the UC system to retain remote learning options for students with disabilitiesBy KATHLEEN QUINN campus@theaggie. orgAs the UC plans to fully re open campuses in the fall, students with disabilities said they feel like the gains made during the pandemic in terms of accessibility are being undone.  Sarah Thuebet, a third year communications major and the president of ASUCD’s Disability Rights and Advocacy Committee , said that the committee is partnering with the Veterans Committee and the Transfer Re Entry Center to write a resolution challenging the decision to remove online options. She hopes the resolution will be drafted in early fall and presented shortly thereafter. “We’re really frustrated by this,” Thuebet said. “Not just for students with disabilities, there are a lot of students who have really benefited from remote learning. ” Sheila Kulkarni, an alumnus of UC Davis and a current graduate student in chemistry at UC Santa Barbara, is now an organizer with UC Access Now, a UC wide disability advocacy group. Kulkarni said that since the start of the pandemic, professors have emphasized leniency and allowed students extra time on assignments. “We should have been doing that regardless,” Kulkarni said. “Where was this energy when people [were] having to prove their disabilities over and over again to the school to get the same grace that’s extended to everyone now because of COVID 19?” DRAC released a survey to students asking for their opinion on the removal of online options in the fall. Though it has only received approximately 100 responses so far, 60% were in favor of continued remote learning options.  “We want to be able to have that option to be online or not,” Thuebet said.  According to the Student Disability Center website, the center is planning for in person instruction with classrooms at full capacity.  Jennifer Billeci, the director of the Student Disability Center, said that her office will be treating requests for online learning as an accommodation that will be reviewed on a case by case basis.  “I would encourage those who feel like an accommodation makes sense for them to contact us and contact us early,” Billeci said. “It’s not going to be an easy accommodation, so early gives us more opportunity to make it effective. ”Richard Tucker, the chair of the Academic Senate at UC Davis, said that outside of faculty with medical exemptions, all courses that were not previously virtual will be held in person, on campus. “Faculty who have a medical exemption from returning to campus will be allowed to apply for permission to continue with emergency operating status for their courses,” Tucker said. “We’re looking at those applications, but I’m not anticipating that very many remote courses will be added through that process. ”Megan Lynch, a second year master’s student in horticulture and agronomy at UC Davis and the founder of UC Access Now, sent a “Demandifesto” to the leaders in the UC system in July 2020 in an effort to highlight the challenges that students with disabilities face at the university.  “It was conceived rather naively, perhaps as a short term thing, because I had faith that as a public institution that the people we had entrusted with their six figure salaries to run this place would actually want to improve these things once it was brought to their attention,” Lynch said. According to Billeci, the SDC is trying to make it easier for students by maintaining a hybrid appointment model where students can sign up for appointments both online and in person. “Our goal in life is to make it so easy [to get accommodation] that you forget about us,” Billeci said. “If we are doing it right, we melt into the background. ”Kulkarni said that they disagree with the university’s plan to re open campuses to full capacity in the fall.

https://theaggie.org/2021/07/29/disability-rights-activists-speak-out-about-the-plan-to-return-to-normal-in-the-fall/

Across Federal Workforce, People With Disabilities See Need For More Representation

Deepa Shivaram President Joe Biden, center, signs a proclamation during an event in the Rose Garden of the White House in Washington, Monday, July 26, 2021, to highlight the bipartisan roots of the Americans with Disabilities Act. Susan Walsh/AP hide caption President Joe Biden, center, signs a proclamation during an event in the Rose Garden of the White House in Washington, Monday, July 26, 2021, to highlight the bipartisan roots of the Americans with Disabilities Act. When Tony Coelho wrote the American with Disabilities Act 31 years ago, his goal was to ensure that people with disabilities could participate in the workforce with equal opportunities of inclusion and success. Three decades later, people with disabilities the largest minority group in the country remain underrepresented in the workforce, particularly within the federal workforce. Four years ago, the government set a benchmark calling for every agency to commit to having no less than 12% of its employees made up of people with disabilities. But even that number fell below parity, given that 26% of American adults, or 61 million people, have a disability, according to the Centers for Disease Control and Prevention. Tracking the governments progress has also proven difficult. Despite the 12% benchmark, the Office of Personnel Management does not routinely track or report retention data on employees with disabilities, according to the Government Accountability Office. Some of the clearest figures come from a 2020 report from the GAO, which found that while hiring of people with disabilities increased from 2011 2017, more work needed to be done to boost retention, training and reasonable accommodation efforts. Coelho says progress has been made: nearly every presidential candidate provided a disability policy plan in the 2020 election. For the first time, there are sign language interpreters for every White House press briefing, and the White House Domestic Policy Council has its first ever director of disability policy. But advocates say its important to continue the momentum. The government, as the nations largest employer, has worked toward being a model workplace for people with disabilities for decades, even before the ADA was signed. The Biden administration has pledged that their hires and appointments will reflect what America looks like, but advocates say change is not just about hiring practices it is measured by changes in workplace culture around how people with disabilities are perceived, and in building workplaces that address accessibility within the framework of equity and inclusion. President George H. W. Bush signs the Americans with Disabilities Act on July 26, 1990. Barry Thumma/AP hide caption President George H. W. Bush signs the Americans with Disabilities Act on July 26, 1990. When President George H. W. Bush signed the ADA 31 years ago this month, the law called for reasonable accommodations to be made for people with disabilities to conduct the essential aspects of their job. But Cindy Otis says thats not what happened for her. Otis, a former CIA analyst and wheelchair user, says that in her 10 year career at the CIA, she faced a number of barriers within the agency that made it difficult to perform basic aspects of her job. She says she also had the added stress of not wanting to bring up too many of these restrictions out of fear of being seen as complaining, or less capable as her colleagues. On several occasions at the start of her career, Otis says she had to call for assistance to open a heavy vault door that was impossible to open from a seated position. Then, she says, she was told she was starting to annoy people when she asked to be let in everyday and should avoid being seen as a troublemaker.

https://www.npr.org/2021/07/31/1020746037/disability-access-representation-ada

Disability advocates calling for reform as US Paralympian Becca Meyers drops out of Games citing lack of support

Becca Meyers asked for her mother to be her personal care assistant. Disability advocates and elected officials are calling on the United States Olympic and Paralympic Committee to rethink its policies after a Paralympic gold medalist swimmer was denied a request to have a care assistant travel with her to Tokyo due to COVID 19 restrictions. Becca Meyers ordeal also speaks to the larger issue of disability inequities amplified by the pandemic, advocates say. Meyers, 26, who is blind and deaf, was set to compete at the Paralympics in Tokyo with the womens swim team in August, and requested that her mother join her as her personal care assistant. Assistants are assigned to help the athlete navigate the Olympic village and with any other duties that are limited because of their disability. Meyers, who won three gold medals in the 2016 Games, announced that she had chosen to withdraw from the team after the United States Olympic and Paralympic Committee denied her request, citing COVID 19 restrictions on the number of personnel it could send to Tokyo. I am angry, I am disappointed, but most importantly, I am sad not to representing my country, she wrote in a statement posted on Twitter. The news stunned the Paralympian and disabled community as theyve been looking forward to her swimming for over five years, Kristin Duquette, a former Team USA swimmer and disability rights advocate, told ABC News. Duquette, who works as a preparedness officer for the Federal Emergency Management Agency and has muscular dystrophy, acknowledged the difficulties that COVID 19 poses in keeping the athletes safe during the two week event, but she said the USOPC could have easily complied with Meyers request. It is a stain on the USOPCs efforts to be inclusive and diverse, she told ABC News. The committee defended its decision in a statement released Wednesday, citing the strict COVID 19 restrictions. It added that a single personal care assistant has been assigned to the U. S. Paralympics Swimming team who has more than 27 years of coaching experience, including eleven years with para swimmers. This PCA joins a staff of 10 additional accomplished swim professionals, all who have experience with blind swimmers; totaling 11 staff for 34 athletes, the USOPC said in a statement. Meyers noted that her mother has accompanied her to events as her personal care assistant since 2017 and was essential for her to compete. Duquette, who is friends with Meyers, emphasized that an athletes personal care assistant is trained to assist with specific limitations that come from a Paralympians particular disability. She noted that Meyers is the only member of Team USA swimming who is both blind and deaf. There is a lot of anxiety that goes into travel. A personal care assistant is really dependent on the disability you have, she said. Meyers announcement sparked calls from Congress to meet the needs of the American Paralympians. U. S. Sens. Maggie Hassan, D N. H. , and Ben Cardin, D Md. , both called on the committee to rethink its rules. Hassan sent a letter to the USOPC reminding them that many disabled Americans are already facing too many hurdles when it comes to athletics and it should set an example for the rest of the world. [The athletes] should not be forced to navigate the Tokyo Olympics without the support that they need, particularly in the midst of a global pandemic, she wrote in her letter. Move United, a nonprofit group that promotes parasports, also called on the committee to rethink its policies given the limited resources for Paralympians. Too often as a community, we are faced with inadequate resources to promote our best selves, and when this happens we should speak up and advocate for our rights to access and accommodation, the group said in a statement to ABC News. We are saddened that Becca Meyers will not be competing in the Paralympics next month. Duquette said the coronavirus has amplified the day to day difficulties that the disabled community faces. From accommodations to assist deaf persons who cant read lips through a mask to difficulties transitioning to a work from home setup, the community has had extra mental stress on top of their fears of catching the virus. Disability is at the bottom when we think of diversity and inclusion, she said. Duquette said she hopes this situation will open more Americans eyes to disability rights and spur change beyond the sports world. Hopefully this is a learning lesson, she said. But this is at the expense of someones dream. 24/7 coverage of breaking news and live events

https://abcnews.go.com/Sports/disability-advocates-calling-reform-us-paralympian-becca-meyers/story?id=78972529

Organization asks city to tackle disability issues, ETHRA service

A local organization is calling for the city of Oak Ridge to be more accessible to people who have mobility issues, as well as requesting better transportation services. Members of the group, the Transportation and Mobility Committee of Strong and United, spoke to the Oak Ridge Municipal Planning Commission on Thursday.  Strong and United is a local organization that has been discussing various Oak Ridge issues. Member Marian Wildgruber, accompanied by her service dog Farrah, gave a presentation. Theres a lot of people in Oak Ridge that would be out and about if they could be, Wildgruber said. She recommended the city invest more money for crosswalks, sidewalks and signals to help people living with disabilities travel in Oak Ridge more easily. She described the current sidewalks as crumbling and unsafe. She said the city does not need to raise taxes, but could move money away from other priorities. She compared the citys current spending of $100,000 per year for 30 years for fixing what she called the worst Americans with Disabilities Act problems with its slated spending of $200,000 per year replacing light fixtures at parks and ballfields. She also said the citys contract with East Tennessee Human Resources Agency , which provides bus services, should include service on Sundays and evenings. She also pointed out that the buses do not allow people to leave Oak Ridge on Saturdays. In her presentation and an interview afterward, she pointed out other weaknesses in the citys ability to provide public transportation, including the end of the volunteer myRide program by which volunteers provided rides to senior adults and the end of a taxi program prior. She also criticized the current system, ETHRA, for only providing people with on demand public transportation if ETHRA is contacted within 72 hours of the need, rather than within the same day. She explained both in her presentation and an interview afterward that mobility issues for people with disabilities are personal. She said she is blind, but was hoping she would be able to walk to Oak Ridge Unitarian Universalist Church. However, she said the lack of signals or crosswalks at certain crossings and the lack of a sidewalk near Summit Medical Group of Oak Ridge, 809 Oak Ridge Turnpike, prevented her from making the trip. Theres currently no way to get to my church, without being in a car, safely, she said. Were hoping to reach out to people in Oak Ridge who have disabilities or know people who do, she said. She said people could contact her at mwildgruber@comcast. net. People can contact her at that email she said, who want to be part of this effort to improve transportation and infrastructure in Oak Ridge, as well as for people who have mobility needs or concerns. Oak Ridge Municipal Planning Commissioner Charlie Hensley, in response, said he would certainly recommend funds for helping people with disabilities in the capital improvement program, called the CIP, a list of funding priorities prepared by the Planning Commission. However, he said there is sometimes difficulty finding funds. Its frustrating from this side too, he said. Oak Ridge Community Development Director Wayne Blasius described requests from Wildgruber and her fellow committee member Tom Burns as reasonable. Apart from Wildgruber and Burns, the committee includes Bill Moore, James Lewis, Linna Nicholas and Heidi Brenner.

https://www.oakridger.com/story/news/2021/07/21/organization-oak-ridge-should-tackle-disability-issues-ethra-service/7987374002/

Mindset Matters: Witnessing A New Relationship For Business And Disability

Since the next sequence of Mindset Matters columns will emphasize the developing relationship between business and disability rather than employment related issues it is important to acknowledge a critical detail, the fact that there are moments when the connection between disability and business can be seen as if there are on two divergent paths when in reality embracing the lived experience of disability must be a key driver for the future of business innovation and developing a competitive advantage for long term growth. While employment issues are often a central narrative, rethinking the relationship between business and disability must begin to be amplified even more.  To begin to dig into this further it is important to think about the notion that the lived experience of disability has a direct connection to many of the business trends of the day. By looking at some of the key industries for startup’s we can begin to get a better picture of where these relationships can grow, but even more importantly why cultivating these relationships make good business sense. Whether it be industries such as EdTech, Healthcare to Leisure and Entertainment it is critical to show the appeal of the disability experience to build a solid foundation for growth. As digital technology is changing the way we learn, EdTech is becoming one of the most appealing industries to start a business. The plethora of opportunities are there, and the capacity to intersect disability and education solutions has hardly begun. Whether highlighting social emotional learning apps, language learning apps to early childhood technologies, the potential to integrate the knowledge of the disability experience can be a real economic force to help these businesses scale and meet the growing demands for these diverse digital learning tools. Not unlike EdTech, Leisure and Entertainment have also become a hotbed of action for entrepreneurs in the startup space. From fashion brands to video games, the demand from the consumer is there and the space for entrepreneurs with disabilities will certainly be needed. According to Vogue Business, the $400 billion accessible clothing market has only begun to take shape and will continue to evolve. The role of the entrepreneur and fashion startups will be a driving force in the marketplace. Similarly, accessibility in the video game market is now reaching a feverish pace where stalwarts like Microsoft and Sony are trying to get their share of this $150 billion market. Yet, there is room for young entrepreneurs out there from game developers, engineers, and other fresh minds who can enter the industry and show that gaming is for everyone and that everything from subtitles to one handed control systems can be beneficial for all. It is this appreciation that propels the very inclusive ethos of the disability experience that is central to business success. Building on this very idea, we must pursue the notion that articulating a relationship with business and the disability community has to be a multifaceted approach. Leadership from startup entrepreneurs to C level executives at Fortune 500 and 1000 companies can explore how to gain market share in these new industries by rethinking the relationship between disability and business. No longer can the disability market be seen through this myopic lens of just a niche market, but rather is viewed as a bazaar that has a mix of cultures and ideas that serve as a panorama for business opportunities.  If organizations can reassess how to build a relationship around disability, then they will be in a better position to reap the benefits. In the next Mindset Matters column, we will go deeper into the mechanics of what building a multifaceted relationship within the disability community can look like and how to connect to the larger business landscape.

https://www.forbes.com/sites/jonathankaufman/2021/07/14/mindset-matters-witnessing-a-new-relationship-for-business-and-disability/?sh=5773d6e25ace

How the airline industry still refuses to accommodate disability

When her wheelchair was severely damaged during her flight on Delta Airlines from Minneapolis to Newark, New Jersey, the model and influencer Bri Scalesse took to TikTok and recorded a video that quickly went viral. Today my freedom and independence was taken away, she said. I dont know how Im going to live my life. Pretty much no one looks forward to airline travel. But if youre a wheelchair user, flying isnt just an inconvenience; it can be devastating. Airlines were reported to have lost or broken 10,548 wheelchairs or scooters in 2019. In 2018, 36,930 disability related complaints were made to airlines. Airlines were reported to have lost or broken 10,548 wheelchairs or scooters in 2019, more than 1 out of every 100 they handle, yet little has been done to address the problem. A disability rights group called All Wheels Up is trying to change that by fighting for the Air Carrier Access Amendments Act, co sponsored by Sen. Tammy Baldwin, D Wis. , and Rep. Jim Langevin, D R. I. The act would require new airplanes to meet accessibility standards and existing aircraft to make modifications to accommodate disabled passengers. According to a report last year by the Transportation Department, airlines damage about 29 disabled travelers wheelchairs every day. No data are available from before 2019, because airlines werent mandated to report or track how many wheelchairs they lost or damaged before that. My wheelchair is my freedom, a part of me, Scalesse told MSNBC. I was devastated. Because wheelchair damages or losses are so common, flying is just not a privilege that equally extends to the disability community. Eighty percent of the wheelchair community does not fly because of a risk to their physical selves or a loss of their wheelchair due to damage, said ??Michele Erwin, the founder and president of All Wheels Up. The organization lobbies for wheelchair users to independently maneuver themselves onto the plane with dignity and safety and to make air travel fully accessible for millions of people who use Wheelchairs around the world. It’s about respecting human rights but it’s also about recognizing the disability community as consumers. Erwin says that along with the organizations vice president, Alan Chaulet, she successfully got airlines to start reporting the number of mobility devices they compromise and to commit to making flying accessible to the disability community. Erwin and Chaulet emphasize that its about respecting human rights but its also about recognizing the disability community as consumers. Flying is tough, but thanks to the Americans with Disabilities Act, most destinations are accessible and so are many more around the world, Chaulet said. People with disabilities have money to spend. Airlines arent just losing money on wheelchair repairs, replacements or flight reimbursements or by offering future travel vouchers for disgruntled disabled travelers; theyre also missing out on the business of potential customers who stay away from flying for fear of becoming another headline. And its also not just wheelchair losses and damage its delays like the one that forced disability rights activists to crawl out of a Delta flight in 2015. Bathrooms on planes arent accessible to people with most mobility issues. While trains and buses are forced to comply with the Americans with Disabilities Act and create accessible wheelchair spots and restrooms, planes have been exempt from complying with the law because they are still following the Air Carrier Act, which was passed in 1986, before the Americans with Disabilities Act was signed into law. While some airlines seem to be showing interest in All Wheels Ups research, education and training programs, the pace of chance is slow. They are taking those steps, Erwin said of the airlines. I just wish they were taking more aggressive steps. . . . Unfortunately, we are still a few years away from the implementation of a wheelchair spot on airplanes.

https://www.msnbc.com/opinion/how-airline-industry-still-refuses-accommodate-disability-n1273650

Minnesota to phase out unequal pay jobs for people with disabilities

Krystal Halford recalls feeling jubilant after landing a job at an assembly plant in Eagan that employs people with disabilities. But after opening her paycheck, Halfords excitement turned to dismay. For two weeks of work, Halford discovered that she had made just $100 amounting to less than $4 an hour. It sent a message that I wasnt valued, that I didnt deserve what others have because I happen to be different, said Halford, 32, who has Aspergers syndrome, a developmental disorder. Halford is among thousands of Minnesotans who have been paid less than the minimum wage solely because they have a disability. They work at dozens of centers across the state, known as sheltered workshops, that are allowed under a loophole in federal law to pay people with disabilities based on their productivity, rather than a fixed hourly rate. In many cases, their pay amounts to less than $1 an hour for basic tasks such as sorting and packaging merchandise, shredding paper or picking up garbage on work crews. More than 8,000 Minnesotans with a range of disabilities, including Down syndrome, cerebral palsy and autism spectrum disorder, attend these cloistered workplaces among the most of any state, according to federal workforce data. Now, this separate and unequal payment regime is coming to an end. This month, after years of pushing by disability advocates, Minnesota became the latest state to move to abolish the practice of paying people with disabilities a subminimum wage. Tucked deep inside a 533 page budget bill is a measure that establishes a task force to develop a plan to phase out subminimum wages by August 2025. Lawmakers also approved $14. 1 million in grants to help disability service providers transform their business models and boost work options in the community. The practice of paying subminimum wages began in the Great Depression as a way to give people with disabilities a chance to learn job skills. But in recent years, the practice has come to be seen as discriminatory, exploitative and a violation of civil rights under the Americans with Disabilities Act. A Star Tribune investigation in 2015 found that many of those in Minnesotas workshops spend years toiling in poverty and isolation with little hope for advancement. At least eight states including Colorado, Maryland, Oregon and Washington have moved to prohibit subminimum wage employment in the hope of integrating more people with disabilities into the general workforce. And early this year, President Joe Biden signaled his desire to end subminimum wages as part of his broader proposal to boost the federal minimum wage to $15 an hour for all workers, including those with disabilities. The world is moving in this direction, said Sen. Jim Abeler, R Anoka, chairman of the Human Services Reform Finance and Policy Committee. Everyone deserves a chance to be as independent as possible and they shouldnt be trapped in a subminimum wage job when they could work at a market wage. But the move to phase out subminimum wages is expected to force dramatic changes at approximately 80 centers across the state that provide a wide range of support services for people with disabilities. Many of these facilities sometimes called day activity centers have long struggled to find skilled workers for their clients. The demand for more staff is expected to intensify as centers transition more people to jobs in the regular workforce. People may require one on one job training, transportation and other services, providers said. Many parents of adult children with disabilities have vigorously supported the alternative wage system, partly due to fears that their children will have nowhere to go if workshops close. In many smaller towns across Minnesota, workshops are bustling hubs of activity, where individuals make social connections and participate in crafts and learning activities. Many centers are the primary source of transit for adults with disabilities, shuttling them to and from work and activities in the community.

https://www.startribune.com/minnesota-to-phase-out-subminimum-wage-jobs-for-people-with-disabilities/600076878/

Disability activists push for more inclusive Pride celebrations

The coronavirus pandemic changed how the United States and countries around the world celebrate Pride month. This summer, many American cities opted for a hybrid celebration, hosting socially distanced marches or completely virtual events. But activists are still pushing organizers to make events accessible for the disabled community. Annie Segarra, a disability activist, who has Ehlers Danlos Syndrome and uses a wheelchair, said things like video captions, translators and audio descriptions of visual events can mean the world to disabled individuals who want to join the celebrations but are afraid of being left out. “Accessibility is not just about physical spaces,” Segarra told CBS News. “Depending on your disability, your access needs are going to be different, and unfortunately, that’s something that a lot of people just don’t consider. I think that people see accessibility as solely a physical experience. So typically, I guess, a representation issue for wheelchair accessibility. But it’s just so much larger than that and it’s such an important conversation to be able to include a number of various disabilities so that the conversation of accessibility doesn’t in itself become exclusive. ” Alexis Hillyard, a YouTuber who was born without her left hand, said it’s freeing when she’s in a space where she and her disability are accepted.  “Accessibility means that people are able to move through and exist in spaces they deserve to be a part of without feeling like they need to change who they are, make themselves smaller and make sacrifices to be able to be in that space,” the 39 year old said. “It’s like being able to be and exist in your full self, as you are, without having to change or adapt to the world around you. ” On her cooking channel, StumpKitchen, Hillyard explains how her disability is an important tool she uses every day and an integral aspect of her life. She’s also deliberate in making her videos as accessible to her viewers as possible. “I didn’t realize before how much I would subconsciously hide my arm or wonder if people were staring or wondering what they were thinking about me or feeling sorry for me,” Hillyard said. “It was a beautiful surprise and just an awareness and release of tension you were feeling that you didn’t realize that you had. ”Segarra said the ability to take inaccessible events virtual, like drag nights at clubs she could not attend in her wheelchair, expands just how many LGBTQ+ individuals can celebrate with their community and makes her heart “three times as full. ” But she also calls many COVID 19 concessions “emotionally complicated” as they are proof to the disabled community that accommodations now considered common could have been implemented sooner.  “All of a sudden, the pandemic came and it very much felt like now that this affects non disabled people, we can make those changes at the drop of a hat,” Segarra said. “When disabled people requested it prior, it was in no way. So while it was such a relief to be able to get those accommodations, the sting of ableism was still there because then you had the option all along to get with these accommodations, but literally because of who we are, because this is the disabled community asking you for it, you thought that we were dismissable. Therefore, you wash your hands of being able to create an accessible, open space, accessible working environment for a single community. ”Segarra also says that those trying to be more inclusive should keep in mind the larger goal of dignity rather than just checking accessible boxes. For both Hillyard and Segarra, their disabilities and queer identities are interwoven aspects of their lives. Every year, the discourse about making Pride more accessible emerges and often upsets some able bodied people.

https://www.wlns.com/top-news/disability-activists-push-for-more-inclusive-pride-celebrations/

A chance to 'amplify one another': What is Disability Pride Month?

For Tiffany Yu, Disability Pride Month is about recognizing her disability as an integral part of who she is. For Anthony Rios, its about accepting that his disability makes him different, not worse.  The Americans with Disabilities Act was signed by President George H. W. Bush on July 26, 1990, a landmark law that prohibited discrimination against people with disabilities. In that same year, Boston held the first Disability Pride Day.  Although Disability Pride Day isnt nationally recognized, parades are held in a number of places nationwide, such as Los Angeles, New York City, San Francisco, San Antonio and more.  In 2015, New York Mayor Bill de Blasio declared July Disability Pride Month in celebration of the ADA’s 25th anniversary. The month is a chance to honor each persons uniqueness as a natural and beautiful part of human diversity, according to Americas Disability Community. Moving away from special needs:Disability advocates, experts implore you to stop saying special needsRios, who is blind, said he grew up hearing his family and adults talk about his disability as if it were a disease or burden. When he was 10, he recalls his mother praying and asking God why her son was cursed with blindness. As he grew older and found friends within the disabled community, Rios said he learned to accept and thrive with his blindness.  Every July, Rios said hes reminded that he doesnt need the sympathy of others – just the acceptance of his disability.  We dont want your pity. We want your pride, Rios told USA TODAY.  When she was 9, Yu was in a car accident that paralyzed one of her arms and took her fathers life. For years, Yu tried to hide her disability by wearing long sleeve shirts and refusing to talk about the accident. She later developed post traumatic stress disorder and took on the challenge of healing and accepting herself. So not only did I become disabled, I also lost a parent and experienced childhood trauma. I think that so much of my healing process has been really experiencing the full embodiment of who I can be and who I am, Yu told USA TODAY. So this month is about people with disabilities like me falling in love with themselves. Conversations about disabilities:Britney Spears forced IUD sparks important conversations about disabilityThis Disability Pride Month she hopes to celebrate the small wins and joys in life, such as learning to curl her hair with the assistance of her foot. She hopes to bring pride to the term disabled and awareness to ableism, the discrimination of people with disabilities.  I want people to confront what creates ableism and why they dont like the word disabled because in reality, there is nothing evil or wrong with being disabled, said Yu, founder of Diversability and Awesome Foundation Disability Chapter. Rebecca Cokley said she was fortunate to grow up in a home that didnt make her feel different or as an outcast. Cokley and her parents have achondroplasia, a type of bone growth disorder that results in dwarfism. Although most of her friends with disabilities werent welcomed in their communities, they were welcomed in Cokleys home. So in her adult life and professional work, Cokley strives to provide those safe spaces for everybody.  For her, Disability Pride Month is not only about embracing disabilities but also learning to love yourself on hard days.  For me this month is not only about celebrating disabilities but remembering theres going to be days where you wont always love your disability, and thats OK too, Cokley said.  When celebrating Disability Pride Month, Jessica Ping Wild urges people to listen and amplify voices from people with disabilities. She said the community is hurting from a lack of representation and care from able bodied people. Ping Wild has CHILD syndrome, a rare inherited disorder that causes limb underdevelopment or absence and large patches of skin to become inflamed. She said celebrating this month is important because everyone deserves to feel good about the skin theyre in and everyone experiences disability differently. The community is diverse, and everyone deserves a voice, Ping Wild said.

https://www.usatoday.com/story/news/nation/2021/07/02/how-disability-pride-month-started-and-what-means/7840560002/

How Funders Can Make Disability Visible

Disability is a relatively untapped area of investment for philanthropy, but one that offers promise of change and multiple avenues for donor impact. By Catherine Hyde Townsend & Bess Rothenberg Jun. 30, 2021 COVID 19 has laid bare what the disability community has been telling us all along: current systems have failed people with disabilities because they were not created with disabled people in mind. 1 As the new UN Special Rapporteur for Persons with Disabilities Gerard Quinn noted at the Human Rights Council’s 46th session, “The COVID 19 pandemic has painfully shown that . . . persons with disabilities are treated as if they are invisible . . . invisibility can create inequality, and unequal treatment can itself lead to, or reinforce, invisibility. ”One in five Americans have a disability, one in every three families has a household member with a disability, and more than one in three of us globally will eventually join the community. And yet a CEP report on equity in philanthropy notes that just 9 percent of foundations reported an increase of funding related to people with disabilities since the pandemic began, and not one explicitly mentioned disability in any of their interviews. Funding for disability policy, advocacy, and rights is paltry, with just six foundations investing over $1 million in 2018, while, globally, just $57 million of grantmaking included persons with disabilities . In 2016, disability leaders called the Ford Foundation out for excluding disability in the foundation’s then new mission to combat inequality. This humbling moment pushed us to make a comprehensive effort toward disability inclusion in both our grantmaking and operations. Disability leaders have been teaching us that addressing inequality means understanding and investing in disability work. Disability not only intersects but profoundly exacerbates the very inequality that social justice philanthropy is committed to addressing. On the one hand, poverty causes disability in a myriad of ways, from lack of access to healthcare and proper nutrition to a greater likelihood of living and working in dangerous environments. On the other, disability also causes poverty, given the outsized expenses of healthcare, discrimination in employment, and public policies which are designed to limit many disabled people to subminimum wages. Disabled people are three times as likely to be denied healthcare and twice as likely as non disabled people to die from lack of basic care while up to 50 percent of use of force incidents with the police involve a person who is disabled. Girls and young women with disabilities experience gender based violence at rates up to 10 times more than those without disabilities. Disability is a relatively untapped area of investment for philanthropy, but one that offers promise of change and multiple avenues for donor impact. We hope that by sharing the steps we have taken, and our lessons learned, other funders can build a roadmap toward disability inclusion. Traditionally, many equate disability with a medical impairment or diagnosis, relegating the issue to medical professionals who seek cures and parents who seek therapies. However, disability is also an identity rooted in a long history of power, discrimination, and community. Disability has a culture; indeed, it has many cultures. Without recognizing disability as a political identity grounded in community and pride, we cannot fully understand why disability is fundamental to social justice “A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity,” as Talila A. Lewis defines it, ableism defaults and prioritizes non disabled bodies. It perpetuates stereotypes and discriminatory practices deeply rooted in anti Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism.

https://ssir.org/articles/entry/how_funders_can_make_disability_visible

Amazon Studios Prioritizing Disability Inclusion

The Hollywood studio behind “The Marvelous Mrs. Maisel,” “One Night in Miami…” and “Borat: Subsequent Moviefilm” is committing to put more people with disabilities on screen. Amazon Studios said this month that it will take new steps to increase inclusion of people with disabilities and other underrepresented groups in films and series. The commitment comes in a new inclusion policy and a playbook that outlines “guidelines for its collaborators in the creative community. ” “We wanted to move beyond good intentions to creating mechanisms that hold us accountable to a high bar,” said Latasha Gillespie, executive head of diversity, equity and inclusion at Amazon Studios. “This inclusion policy and inclusion playbook add important, additional depth and guidance for our internal teams and external partners to ensure we continue to advance our shared mission of amplifying the best creatives and content around the world. ”The inclusion policy covers story development, hiring and production and includes expectations for documentation and meeting certain goals. Namely, Amazon Studios said it is aiming to include one speaking character with a disability, one from the LGBTQIA+ community as well as three characters from regionally underrepresented racial, ethnic or cultural groups in each production. In addition, the policy indicates that actors should be cast in roles that match their identity in terms of gender, nationality, race/ethnicity, sexual orientation and disability. There are also goals related to seeking bids from a diverse group of production vendors or suppliers and to address pay equity. The studio indicated that productions will need to complete a report template covering the inclusion goals within one month of wrapping up principal photography. Amazon Studios said it worked with experts at the USC Annenberg Inclusion Initiative, the Disability Rights Education and Defense Fund and other groups to create the new policies, which the company said are intended to minimize biases and increase representation in front of and behind the camera. With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services.

https://www.disabilityscoop.com/2021/06/22/amazon-studios-prioritizing-disability-inclusion/29389/

Moms push back against transplant discrimination based on disability

A West Michigan mom is rewriting the rules when it comes to the state’s organ donation process, inspiring legislation banning discrimination based on disability. Lindsay Filcik’s 3 year old daughter Ivy was born with Down syndrome. “When Ivy was born, it really changed my world quite a bit and opened my eyes to a lot of the discrimination that happens for people with disabilities,” Filcik said. By the time Ivy was 1, Filcik discovered her daughter could even be discriminated against during the organ transplant process. After doing some digging, Filcik learned individuals with a physical or intellectual disability have been denied a spot on a transplant list because of their disability. She said people have also received lower priority on a transplant waitlist based on their disability. “It really hurt knowing that there were people that would find life not worthy of saving if she were ever in need of an organ transplant,” Filcik said. “I have two typical children and to know that their lives may be categorized differently than hers is just not OK,” Flick says some health care professionals have defended the move, believing that people with a disability may have trouble following post transplant care instructions or lack the support to do so, potentially wasting the donation. But for the parents of a kid with a disability, there’s no excuse. Cyndi Peters of Grand Rapids also has a son with Down syndrome. Peters joined Filcik in advocating for change, wanting to know why Michigan hasn’t done more to protect those with a disability. “There’s like 12 or 13 states that already have this legislation on the books, and so I was just confused why doesn’t every state have this?” Peters said. Though the federal Americans with Disabilities Act of 1990 bans discrimination during the transplant process, the National Down Syndrome Society says people with disabilities still don’t receive equal consideration for organ transplants. With the help of the NDSS as well as state lawmakers, the moms helped craft House Bill 4762, outlawing the denial of a transplant or lowering a person’s place on a transplant waitlist based on a physical or intellectual disability. The state House passed the bill last week with overwhelming support. They also approved another piece of legislation that would allow HIV patients to donate their organs to HIV positive recipients. Both bills must be passed by the Senate and signed by the governor to become law. Sunday will be National HIV Testing Day. The Kent County Health Department has teamed up with the Grand Rapids Red Project to provide free HIV testing and education.

https://www.wlns.com/news/moms-push-back-against-transplant-discrimination-based-on-disability/

Hear My Voice: A win for music artists with a disability

Krip Hop Nations George Doman, aka georgetragic, is a Los Angeles based rapper who helped bring a Sports Emmy award for the Netflix film ‘Rising Phoenix. ’Plastic leg braces, also known as ankle–foot orthosis have been integrated as a part of my framework. Sometimes, on many visits to doctor, Paralympic Games posters would grace the office walls. I was impressed with the stature of those Para athletes as I was navigating through life as a disabled adult. Preparing for your destiny is often questioned, as self doubt tends to sink in, muddying the waters my sound waves seem to form during every recording session. I was told many times that lyrics covering disabilities would not reach the shores of the mainstream, but on 8 June 2021, the Netflix documentary about the Paralympic Games ‘Rising Phoenix’ became a sound wave built on the strength of those same titans; it generated a typhoon. Yes, men and women would recognize our power in disabilities, and those same gatekeepers would have to answer some questions regarding inclusion. I question, merely judging any unsigned artists based on followers, verification badges, or YouTube viewership? Unfortunately, social security does not cover the high contract prices or fees. Our music business has lost the essence of finding unique artists because traditional gatekeepers lock access to the promised land! A&Rs , managers, and producers charge submission fees to rigged contests. Music executives no longer execute their intuition as the intimidation of using only their ears to pick and choose who may influence the masses takes the presidency. Krip Hop and their crew of leaders disabled this very thought process by winning, the Sports Emmy. Trophies, accolades, and recognition are merely war medals. My personal life was more of a battle with human rights, as earning a simple job interview was tarnished by discriminatory remarks. See, Im a rap artist, but I have regular dreams of a disabled body, but I also want to provide for myself and my family. Hollywood gave Drake a wheelchair to cover strength during his time filming Degrassi . And it makes me question the depiction of our stories on screen. We need more connection to the human spirit, and the disabled community is ready to tell and share their beautiful imperfections. When I was 17, I met a successful entrepreneur during an awareness week who happened to be disabled. I heard his story of having a family, a wife, and peace of acceptance in society. I asked him how he gathered the strength to pursue a family and success, and without uttering a word, I was covered in tears, the very tears that drowned me in self doubt.  With the Emmy win, I realised maybe inclusion is achieved by the same hardships that make us question our existence in the world. I found my existence and a fitting position as a brands campaign assistant for the International Paralympic Committee, were not only is inclusion championed, but empathy too is practiced. To the recording studios and companies that discriminated against me in Los Angeles, your closed minds missed out on a Sports Emmy winner!

https://www.paralympic.org/blog/hear-my-voice-win-music-artists-disability

When Disability Representation Falls Short

Get regular updates to your inbox. by Brianna Albers | June 21, 2021 Everyone knows that I’m a “Star Wars” buff. Lately, I’ve been listening to “Star Wars” audiobooks, specifically the Old Republic series. I’d heard some not so great things about the first novel, “Revan,” but eventually, my curiosity won out. After all, if there’s one thing “Star Wars” audiobooks have going for them, it’s the performance from sound effects to triumphant fanfares. The second book in the series, “Deceived” by Paul S. Kemp, is fun in that it introduces characters and locations from the companion game, “Star Wars: The Old Republic. ” I keep going, “Oh, I know this place! I know that person!” It has enriched my relationship with my favorite video game no small feat, considering that I’ve been playing it on and off since 2013. Of course, “Deceived” has its flaws. The book follows several characters, including a smuggler named Zeerid. A former trooper, Zeerid resorted to running spice the “Star Wars” equivalent of narcotics when his daughter, Arra, was injured in an accident that killed Zeerid’s wife. We learn over the course of the novel that Zeerid has spent the past couple of years working for the Exchange, a gang syndicate, all to buy a hoverchair the “Star Wars” equivalent of a flying wheelchair for his daughter. I wanted to enjoy the disabled representation. I have a soft spot for father daughter relationships, and I’ve been longing for a character like me a character with faulty legs, a defective body in the “Star Wars” universe. But the more I listened, the more uncomfortable I became. Zeerid often reflects on Arra’s situation, lamenting his daughter’s disability. He spends much of his time with Arra wishing she could walk or, at the very least, have one of those expensive hoverchairs. Meanwhile, Arra seems perfectly content with her body. We’re not privy to her internal dialogue, but the author suggests that, unlike Zeerid, Arra does not see her condition as tragic, or even something to fix. Her disability is simply a facet of life. In fact, more than anything, Arra wants to spend time with her father, Zeerid, who justifies his absence by putting his pay toward that elusive hoverchair. At one point, Arra’s caregiver Zeerid’s sister in law takes him aside. Zeerid has been working tirelessly, and while his determination is commendable, the fact of the matter is that Arra misses her father. She doesn’t care about expensive technology or up and coming treatments. All she wants is to be with the person she loves during her formative years. We eventually realize that Zeerid feels responsible for Arra’s accident. His desire to provide for Arra, while genuine, is tinged with guilt. He wants to buy a hoverchair so he can assuage his conscience. Arra’s disability is a plot point, but more than that, it is something to be fixed and nothing more. Zeerid agrees to deliver spice to a besieged world for a considerable amount of credits. He puts the advance toward a hoverchair, and surprises his daughter with it before setting out on the mission. She’s understandably excited, but we can tell that her joy stems from seeing her father for the first time in ages. Zeerid is so intent on “fixing” his daughter that, in so doing, he is slowly ruining their relationship . This is the kind of representation that hurts more than helps. Disabled girls are seen as tragedies in real life; the last thing I want is for that sense of “worst case scenario” to bleed into my choice of fiction. Arra can’t walk. Her accident was traumatic for all parties, and rightfully so. But Zeerid can’t see past his own prejudice, while Arra is busy living life to the fullest, hoverchair or no. It’s a narrative that plays out time and again, and frankly, I’m tired of it.

https://smanewstoday.com/columns/2021/06/21/when-disability-representation-falls-short/

Teen addresses Ohio bill as future of disability rights lies in oversight amendment

Get hyperlocal forecasts, radar and weather alerts. Please enter a valid zipcode. SaveCOLUMBUS, Ohio An Ohio teen addressed legislators at the Ohio Statehouse on an amendment to a bill addressing services to those with disabilities. As Erin Fearn, 14, walked with her loyal dog companion, Gratto, she reflected upon her testimony from a few weeks ago in front of the Ohio Senate Finance Committee, fighting to save the non profit advocate Disability Rights Ohio.  “Amendment to House Bill 110 just wasnt right,” Fearn said. “That was no place to be talked about within the state budget, and thats something actually needs to be done about that, to make sure that DRO is capable of helping people, not just disabilities but everywhere. Someone who has a voice that can be silenced and make sure that voice is heard. ” Erins mom, Charity, said her daughter has used DROs resources since 2018 for her own disability.  House Bill 110 calls for extra oversight of Disability Rights Ohio, a federally mandated independent organization. Charity fears if the amendment in House Bill 110 passes in the state budget, ripple effects may follow. “If that happens, that can put a lot of other programs in danger in Ohio, like opportunities for Ohioans with disabilities that provides job training and education,” Charity Fearn. “I have tremendous amounts of fear about my daughter and whats going to happen to her as I age and become older and, you know, services being available to her. ” State Sen. Mark Romanchuk, who is pursuing the amendment, said change is necessary because of complaints concerning DRO.  He said the organization has contacted residents of Intermediate Care Facilities, or ICFs to discuss services without parents or guardians present“The individuals that are living in ICFs, are not as high functioning as Miss [Erin] Fearn was, so it’s a different person that we’re talking about here,” Romanchuk said. “In order to be a resident of an ICF, you’ve already received a diagnosis of intellectually disabled. ” DRO representatives said while that has been their approach, most of their clients are adults and minors haven’t been contacted directly.  Meanwhile, Erin Fearns said she will continue the fight, advocating for all people with disabilities.  People with disabilities deserve an independent voice, to uphold laws and fight against without retaliation,” said Erin Fearn.  The state’s budget runs through June 30.

https://spectrumnews1.com/oh/columbus/news/2021/05/24/future-of-disability-rights-ohio-

Feds Launch Hotline To Help People With Disabilities Access COVID-19 Vaccines

A new push is underway to help more people with disabilities get vaccinated against COVID 19. The U. S. Department of Health and Human Services is unveiling what it’s calling a first of its kind national hotline offering information and services directly aimed at boosting access to the shots for people with disabilities. Officials said the Disability Information and Access Line can help people find nearby vaccine sites, make appointments and link people with local services like accessible transportation. The hotline also can provide information and resources to answer questions and address concerns about the vaccines and can connect callers to information and services that promote independent living and address fundamental needs, such as food, housing and transportation,” the federal health agency said. The resource is being offered through a partnership of the Administration for Community Living and the Centers for Disease Control and Prevention in collaboration with the National Association of Councils on Developmental Disabilities, the National Council on Independent Living, the National Disabilities Rights Network and other organizations.

https://www.disabilityscoop.com/2021/06/14/feds-launch-hotline-to-help-people-with-disabilities-access-covid-19-vaccines/29374/

How To Find Your Disability Community

Disability CommunityThere seems to be a wide gap between how we talk about “The Disability Community,” and the number of disabled people who actually feel like a part of it. Most disabled people want to connect with a vibrant, supportive community of their peers. Some can’t find the disability community at all and don’t know where to look. Others do find it, but feel excluded, or can’t find a welcoming way in. This is an especially common problem for people new to disability – like disabled youth, adults with new disabilities from illness or accident, and older people with age related impairments. But plenty of people with lifelong disabilities also struggle to find acceptance among their disabled peers. Some of the problem stems from divisions, hierarchies and exclusivity among disabled people – the same kind of divisiveness found in every other social group and subculture. But despite the disability community’s many faults, there are ways for individual disabled people to break through and find fellowship, support, and cooperation. Here are three tips for people with disabilities looking for a welcoming and empowering disability community:1. Don’t look for “The” Disability Community. Look for “A” disability community that’s right for you. There isn’t a single, all encompassing Disability Community. But there are many interesting, quite different, but overlapping disability communities. Each one has a different focus, style and personality. So before you dive in, think about what you are hoping to find:Once you have a better idea of what exactly you are looking for, you can start a more thorough and deliberate search for communities that are most likely to meet your needs. 2. Explore the many different versions of “Disability Community”There are thousands of formal organizations and informal groups to choose from. Here are a few of the most basic types of disability community to consider:Disability policy development and activismJoin with others in developing, defending, and changing laws, policies and programs that support and serve people with disabilities. In the U. S. , you can start by exploring and teaming up with advocacy organizations like the American Association of People with Disabilities, ADAPT, ARC, and the National Council on Independent Living. It also helps to keep up with current disability rights and policy issues by reading about and joining advocacy campaigns on Facebook and Twitter, which offer more information and interaction than most disabled people can ever get in person. Local disability advocacyGet involved with other disabled people in your area to advocate for local disability issues, like street and sidewalk accessibility, building code enforcement, and state funding of disability services. Most cities, counties, and regions have local chapters of disability organizations that work on local advocacy. A good place to start is your nearest Center for Independent Living, nonprofit service and advocacy organizations governed and staffed by people with disabilities. There are CILs in every state and territory of the U. S. , and many in other countries too. You can join with their advocacy efforts, and learn from your CIL what other disability organizations in your area are doing. Disability cultureDisability culture is the sum of all creative work by people with disabilities, particularly work that focuses on and reflects disability experience. It includes disability based journalism, cultural commentary, blogging, podcasting, vlogging on YouTube, Instagram and TikTok, books, poetry, painting, music. You can gain a lot of insight from enjoying disability culture. You can also develop a unique and valuable voice creating your own works of disability culture. And the more disabled people participate in disability culture the richer and more empowering it becomes.

https://www.forbes.com/sites/andrewpulrang/2021/05/31/how-to-find-your-disability-community/?sh=2f88ea3410fe

The Pandemic Pushed KKR To Bet $55 Million On Improving Disability Access In The Digital World

This is an excerpt from Deal Flow, Forbes’ daily newsletter about big buyouts, big mergers and the rest of Big Finance. Want a new edition in your inbox every afternoon? Subscribe here. We go to school online. We go to work online. We go to the doctor online, order food online, visit with our friends and family online. These were all options before the pandemic, to varying degrees. But a seismic shift has occurred during the past year, one that has made it harder than ever to thrive in the physical world of bodies and buildings without also successfully navigating the virtual realm of browsers and bytes. This has created acute problems for some people with disabilities, who far too often are forced to use websites, apps and other online offerings that were very clearly not designed with them in mind. And those problems were one of the primary reasons KKR made a $55 million investment this week in Essential Accessibility, a Toronto based software provider that helps other companies ensure that their digital offerings are accessible and usable for people with disabilities. Making the online world easily navigable for everyone is the primary aim at Essential Accessibility. “There were so many offline, physical experiences that people were used to having that transitioned exclusively to digital,” said Jake Heller, a managing director at KKR who leads the firm’s technology focused growth unit. “And it’s highlighted the need to provide access to those with disabilities. ”The CDC estimates that more than a quarter of all adults in the U. S. are living with some form of disability. And everyone with a different disability has different digital needs. For people with blindness or other vision difficulties, an inaccessible website can be unusable. For people with hearing impairments, subtitles are a necessity. Individuals with limited mobility or dexterity may find it difficult or impossible to use a mouse to navigate around a web page. These issues have existed for decades. But lately, they have become inescapable. When Massachusetts, for instance, launched its registration system for COVID 19 vaccines in March, the only way to book was an appointment was to do so online. Opting out of the digital world is no longer an option. One reason companies should be concerned with making sure their digital products are accessible to everyone is because it is simply the right thing to do. But there are also other motivations for those who need an extra push including an increased rate of lawsuits aiming to hit companies where it hurts for failing to comply with standards outlined by the ADA and other guidelines. The most prominent recent example involves Domino’s, which was successfully sued by a blind man named Guillermo Robles after he was unable to order food from the restaurant online despite using screen reading software. The Supreme Court denied a request for appeal in 2019, establishing a precedent that the ADA does in fact apply to online platforms. Now, thousands of lawsuits related to website accessibility are filed in the U. S. each year. That’s one factor driving an increased acknowledgement among the corporate world that digital access is something that needs to be addressed. “When we were early stage at this, it just wasn’t front and center. It wasn’t a priority for organizations,” said Simon Dermer, a co founder of Essential Accessibility and the company’s chairman. “And now, the last few years, it’s coming to fruition. ”Essential Accessibility’s platform aims to improve on the traditional, consulting based approach to digital accessibility by combing a sense of a personal touch with its proprietary software. The goal is to make it easier than ever for customers to both improve and monitor the digital accessibility of any online offerings while accounting for the wide range of different features that various users might require.

https://www.forbes.com/sites/kevindowd/2021/05/30/kkr-bets-55-million-on-improving-disability-access-in-the-digital-world/?sh=10c90e4d1d3c

Northeast Guilford High senior doesn't let disability define her

“Trust the process. ”That’s the motto Northeast Guilford High Senior Anslyn Wright lives by. “Whether that’s your education, your personal life, whatever it may be. You’re always going to have a successful outcome as long as you just trust the process,” Wright said. Wright is an active and outgoing student. She participates in Girl Scouts, Future Business Leaders of America, and the Women’s Ministry at her church. Saturday she will graduate with honors. “I’m really excited, it’s been a long journey,” Wright said. “I loved my time at Northeast. I feel like the staff they always encourage the students to be as successful as possible and want what’s best for us. ”The road to success hasn’t been easy. Wright suffers from a form of muscular dystrophy. The genetic disease confines her to a wheelchair and requires her to receive assistance from a full time nurse. RELATED: Triad high school senior gets accepted into 17 colleges“The disease has impacted my education because I have to figure out different ways to do certain things that just come naturally to most people,” Wright explained. Despite her limitations, she said with the help of her family she’s managed to adapt to any situation. “They always want the best for me,” Wright said. “They do any and everything in their power to make sure that I’m successful. ”As she starts her new chapter, she said her goal is to continue to “trust the process” and be as independent as possible. Wright plans to attend Guilford Technical Community College with a major in Medical Office Administration

https://www.wfmynews2.com/article/news/education/northeast-guilford-high-senior-doesnt-let-disability-define-her/83-385fddfd-cf7e-4012-b38c-fce08ed96937

Disability Advocacy Organization Opens Exclusive Spanish Intake Hours

Disability Rights Iowa provides advocacy and legal assistance to people with disabilities. In an effort to reach all of Iowa’s populations, they have added an exclusive schedule solely for Spanish speakers: Tuesdays 11 a. m. to 1 p. m. and Thursdays 4 p. m. to 6 p. m. The grant funded organization is designated as a State Protection and Advocacy System through federal mandate. There is a P&A in every U. S. state and territory. Our mission and purpose is to protect the rights of individuals with disabilities, and promote community integration and access to services for those folks, staff attorney Charissa Flege said. She clarified DRI is an independent, private nonprofit though, not part of the government. In an effort to have their clients reflect the states population demographics, DRI staff worked with community leaders within the Latino and Spanish speaking communities to determine the first step needed was offering those exclusive Spanish hours. Vanessa Santos Nila, the new bilingual intake specialist and outreach coordinator at DRI, helped lead the initiative. She said bringing the conversation to Latino communities in the state will be a long term project. “You know there’s a lot of barriers within our community, theres the stigma, the fact that, you know, disability or discapacidades is not even something that is spoken about. And if it is, its spoken about in a very negative light, Santos Nila said. DRI is partnering with the Iowa Office of Latino Affairs in an awareness campaign for the new Spanish intake hours. They started with simply advertising a definition for disability in Spanish. For people who dont speak Spanish or from Spanish speaking communities, they dont understand that we have to start from the basics, like what is a disability? What is the definition? And from there just work very methodically to kind of make the community aware, Santos Nila explained. Then hopefully years down the line, well become an agency that they can look at and recognize: Okay, yes, I have a disability or I have a child with a disability. As an example to describe the difficulties talking about disability in Spanish, Santos Nila brought up the complexities of Spanish grammar. When describing a persons feeling, the Spanish language uses a temporary verb. There isnt a lot of flexibility in the language to describe a long term mental or emotional status. Santos Nila said theres one other aspect to consider: I think just lack of information is whats causing us from not being able to talk about it. The exclusive hours havent warranted many calls yet, but Santos Nila said reaching a new community will take some time. And its time well spent according to DRI attorney Flege. She said ensuring all communities have access to resources has a ripple effect across the state. If you look at our community as a whole, we all do better when everybodys needs are met, when everybody has access to employment, when everybody has access to health care, when everybody is able to stay employed at jobs that they love, Flege said. This is important to Iowans. Collectively.

https://www.iowapublicradio.org/ipr-news/2021-05-25/disability-advocacy-organization-opens-exclusive-spanish-intake-hours

College of Law Announces Inaugural National Disability Law Appellate Competition

The College of Law and the National Disabled Law Students Association will co host the inaugural National Disability Law Appellate Competition , to be held virtually March 25 27, 2022. This new advocacy competition will feature a minimum of 12 teams from law schools across the United States. The competition problem will cover a significant and timely legal issue in disability law and will consist of an appellate brief writing component and an oral argument component. The College of Law’s Travis H. D. Lewin Advocacy Honor Society and the Disability Law Society are co sponsors of the competition. “NDLAC is the first national appellate advocacy competition to focus exclusively on disability law. It will enable students to develop their oral advocacy skills while simultaneously navigating a challenging important area of disability law,” says Professor Michael Schwartz, director of the College of Law’s Disability Rights Clinic. “The competition will replicate a realistic appellate court setting by exposing students to actual judges and lawyers who are familiar with appellate practice. ”Each team may be comprised of two or three students. Teams will be assigned to represent either the petitioner or respondent and will write an appellate brief on behalf of that assigned party. During the preliminary rounds, each team will argue on behalf of each party. The highest scoring teams will then move on to the quarterfinal round, the semifinal round and ultimately the final round where a winning team will be decided. “The College of Law encourages law students from across the country to participate in this new, first of its kind advocacy competition and to be part of history!” says Professor Todd Berger, faculty director of advocacy programs. “Breaking new ground in advocacy competition, I’m pleased to add NDLAC to Syracuse Law’s two other national and international tournaments, the Syracuse National Trial Competition and the Transatlantic Negotiation Competition. ”For information, visit the NDLAC webpage. Applications will open in August 2021. Carlton Daniel Jr. G’16 fell in love with filmmaking at an early age. Growing up in Ohio, he spent a lot of his childhood at the local movie theater, browsing for videos at Blockbuster and dissecting films with his family…. Creative advertising students at the Newhouse School have set the program record by winning an impressive 195 awards in one year. “What most impressed me about the awards the Newhouse creative advertising students won was not the amount but the…Syracuse University Trustee and alumnus Larry Kramer ’72 has had a legendary career as a journalist, media executive and entrepreneur. His award winning career included more than 20 years as a reporter and editor with the San Francisco Examiner and The…Rockell Brown Burton, an experienced academic leader and accomplished researcher with a passion for cultivating impactful, mutually beneficial relationships, has been named associate dean of inclusivity, diversity, equity and accessibility at the Newhouse School.

https://news.syr.edu/blog/2021/05/24/college-of-law-announces-inaugural-national-disability-law-appellate-competition/

Disabled Scientists Are Often Excluded From The Lab

Emily Kwong Thomas Lu Professor with muscular dystrophy working with engineering students setting up adjustable stage at chemical analysis instrument in a laboratory Disability Professor with muscular dystrophy working with engineering students setting up adjustable stage at chemical analysis instrument in a laboratory scientists and students with disabilities are often excluded from laboratories in part because of how theyre designed. Emily Kwong speaks to disabled scientist Krystal Vasquez on how her disability changed her relationship to science, how scientific research can become more accessible, and how STEM fields need to change to be more welcoming to disabled scientists.

https://www.npr.org/2021/05/27/1000869161/disabled-scientists-are-often-excluded-from-the-lab

5 Simple Ways To Support Disability Activism

Disability activism is empowering. For some disabled people who get involved, it opens up avenues for friendship and “chosen family” among other disabled people that they may have missed all of their lives. In some circles at least, disability activists are admired. Activism can be a strong source of pride. Disability activism is also useful. It makes real positive change. But not everyone can become a full time activist, or even a part time advocate for more than an occasional personal need. There can be many reasons for this:But none of these are enough reason to shun disability activism entirely, if its goals are your goals. There are ways to help that don’t require full on commitment or a wholesale change in your life and personality. 1. Share disability articles and action alerts on your social media platforms This is especially helpful if you have “friends” and “followers” from other professions and communities, who don’t spend much time with disability issues. Your credibility with them may prompt at least a few of them to read and think about disability issue for the first time, or from a new perspective. Examples:2. Amplify the voices and work of disabled activistsSocial media in particular has built in ways for you to boost what other people are saying and doing. Boosting other people’s work and ideas is a valid and valuable way to contribute to disability issue discussions, especially if you don’t yet feel comfortable explaining things in your own words. It’s also a way to “pass the mic” to others who struggle to be heard, but have something valuable to say. Non disabled allies and disability activists especially should make it a priority to share the words and work of activists who have disabilities themselves. Examples:3. Tell your own disability story this is often the best way to start having your own say. Begin by explaining exactly how a disability issue affects you as a disabled person, or as an ally to a disabled person. If you are a non disabled ally though, like a parent or spouse, make sure not to confuse your story with your disabled loved one’s own story. They may be related, but they aren’t the same. You can only really tell your story from your point of view. Also, don’t stop with your story. If your goal is some kind of concrete change, don’t just tell your story to make people feel bad for you, or to center your own struggle only. Whenever possible, draw clear connections between your personal situation and a broader disability issue, how it affects other disabled people, and actions your audience can take to address the issue. Examples:4. Connect advocacy for yourself or a loved one with a disability, and activism for the broader disability community can be useful to think of this by calling the persuasion work you do to solve your own disability related needs and conflicts “advocacy,” and work with others on broader disability policies and practices “activism. ”Both advocacy and activism are important and have their place. But their goals, methods, and tactics are often quite different. And carefully chosen activism has enormous potential to expand the scope and positive impact of effective advocacy,, beyond yourself or your family alone. Examples:5. Remember disability issues when you voteDisabled people have been voting in greater numbers in recent years. But disabled people on average still register and vote at lower rates than non disabled people. And it is still hard to pin down whether there is a coherent “disability vote,” with identifiable, predictable points of view. That’s partly because it’s not clear how much disabled people factor in their disability experiences when they do vote. You don’t have to make disability your top political priority to make a difference with your ballot. You don’t have to set aside all of your deepest opinions. You don’t have to put your disability in charge of your vote.

https://www.forbes.com/sites/andrewpulrang/2021/05/15/5-simple-ways-to-support-disability-activism/?sh=58ea1953678e

At disability parade, Montclair is ‘proud to know everybody’

About 100 people marched from Heningburg Field to Rand Park on Sunday as part of Montclair’s first annual Disability Pride parade. Organized by the Montclair Friday Group, a support and social action group for parents of children with disabilities, the parade was an effort to address what participants saw as a lack of community recognition of Autism Awareness Month which occurs in April this year.  Board of Education member and mother to a 10 year old with autism Allison Silverstein said she had been “really looking forward to April 2 as World Autism Day,” hoping the day would be a chance for disabled kids to be recognized and celebrated.  “But the moment came and went and almost nothing happened,” Silverstein said. “I was sad, and I was disappointed. ”She shared those feelings with the Friday Group, an online community and weekly drop in group for parents of children with special needs in Montclair. “From that conversation, an idea started,” said Silverstein, who is also on the leadership team for the community’s Special Education Parents Advisory Council. Montclair Friday Group founder Alma Schneider said members decided to have their own version of Disability Pride New York City Parade, which was cancelled this year due to the coronavirus. “We decided, lets just do it ourselves,” Schneider said.  Mike LeDonne, founder of the NYC parade, said the idea sprung from his desire for the world to see his daughter, Mary, in the same way he did. Mary has a rare syndrome called Prader Willi and hydrocephalus . He was planning for the NYC parade to be a small, local event but it has become something much bigger, he said.  “Disability pride means were proud to know everybody,” LeDonne said. “And the people that are disabled, they have rights, same rights everybody else does. ”In Rand Park, community members spoke about the importance of the parade and normalizing disability. Sign language was used throughout the event.  Julia Frances, a mother of a daughter with Down syndrome and who has a disability of her own, said there are lots of possibilities for “different abled” people in this country.  “We are here because we have to tell the world that we are here and we are here to stay,” Frances said.  Montclair High School senior Minal Rosenblum shared her experience with Down syndrome, saying she’s learning to advocate for herself as a student in MHS’s Center for Social Justice, an interdisciplinary program focusing on the impact of social movements.  “People who have Down syndrome are basically normal,” Rosenblum said. “They do regular things like hanging out with friends and going to work. They enjoy life. Some people dont care about disability. They think some people with disabilities should not be included in school, and they should be separate. That is called discrimination. ”Rosenblum said people with disabilities should be proud of who they are and paraphrased Lady Gaga’s song “Born This Way”. “I have a disability, and nobody can mess with me,” Rosenblum said. “I love myself the way I am because I am born this way. ” Ezra Rifkin, who has autism and who will graduate this spring from Montclair High Schools Community Based Transition program, said laws like the American Disabilities Act cant work when they are ignored or disobeyed and said its important for those with and without disabilities to work together to fight discrimination. “Make sure that people with disabilities are at the table when you are discussing them. Nothing about us without us means that when you are talking about town planning, building construction, transportation, education and jobs, make sure were there to represent ourselves, Rifkin said.

https://montclairlocal.news/at-disability-parade-montclair-is-proud-to-know-everybody/

Disability and DEI: Overlooking a group that is everywhere

After a year where diversity, equity, and inclusion became a hot topic in the workplace, advocates for workers with disabilities express cautious optimism about the nation’s movement toward a more inclusive workplace. There has been progress, they say, but disabled workers many of whom have no outward sign of disability can still feel overlooked or undervalued by the companies they work for. Part of the problem, advocates say, is that “disability” covers such a wide range of conditions, many of them not apparent to people who may be co workers or managers. And workers who start a career free of disabilities may acquire one or more as they grow older. On the positive side, half of CFOs believe the economic impact of COVID 19 is waning. White PaperSponsored by MeMDThe Burnout Epidemic: Why Employers Must Address Work Related Burnout & How Telebehavioral Health Can HelpTwo thirds of workers are experiencing burnout at work. Help your employer clients address this leading issue with an easy to implement telebehavioral health solution guaranteed to lower absenteeism and improve productivity at a low cost. Browse More Resources ›GuideSponsored by GRAIL, LLCThe Missing Piece in Employee Cancer benefits in the current benefits landscape for self insured employers, solutions exist to help you and your employees navigate an increasingly complex oncology process.

https://www.benefitspro.com/2021/05/14/disability-and-dei-overlooking-a-group-that-is-everywhere/?slreturn=20220431221415

Expert Advice for Traveling Abroad With a Disability

Features & Advice Lacey Pfalz May 10, 2021 Traveling internationally can be a daunting idea for many people for a variety of reasons: pricing, long travel times, language barriers and more. But for people with disabilities, traveling internationally can sometimes feel like an impossible experience. However, that isn’t necessarily the case. Cory Lee is an Accessible Travel Blogger at CurbFreeWithCoryLee. com, where he writes about his personal experiences traveling domestically and abroad in a wheelchair. A vacation to the Bahamas as a teenager fueled his desire to see the rest of the world, and he made traveling not only his passion but also his career. “I would encourage any new travelers to start small and work their way up to bigger trips. Go on a weekend getaway to a nearby city. This will give you a chance to get familiar with what you need in terms of accessibility. Then, you could take a short plane ride to get familiar with the ins and outs of air travel with a disability,” said Lee. The Rise of the Staycation$17 Billion Cannabis Tourism Industry Will Only Continue. . . US Summer Vacation Spending Projected To Reach $194 Billion“Once you feel comfortable, you can then travel internationally and you’ll be much more prepared and feel more confident in your ability. There are also a ton of resources online to better prepare you for travel. Some of my favorites are accessible travel blogs and Facebook groups ,” he said. Besides starting small, Lee also stresses the importance of knowing what every traveler needs to focus on in terms of accessibility. Whether it be finding accessible tours or making a handy list of nearby hospitals in case of an emergency, the Internet can provide avid researchers with a wealth of information. “When traveling internationally, I think it’s most important to have a positive attitude and expect the unexpected. On almost any trip, especially as a wheelchair user, something is going to go wrong. When that happens, it’s important to stay calm and know that for every problem, there is a solution,” he said. “Be prepared by researching as much as possible before the trip this could include looking up wheelchair repair shops within the destination and having that list handy or knowing various accessible transportation companies in case you need alternative transportation quickly. ”Travel insurance is also incredibly important to have for those with preexisting conditions, but not all travel insurance plans are equal or even cover preexisting conditions. “I think travel insurance is important for every traveler, but especially people with disabilities. I use Allianz Travel Insurance’s annual plan, which does cover preexisting conditions. It has proven to be well worth the annual fee. In 2019, I suffered a skull fracture while on a trip in New Mexico. Without the travel insurance, I would’ve been stuck with some huge hospital bills,” Lee said. According to the latest CDC data, 61 million Americans live with a disability, which is about one in four individuals. The Open Doors Organization found that in 2018 and 2019, 27 million Americans with disabilities took 81 million trips, spending $58. 7 billion on their travel expenses. Those with disabilities play an important role in the travel and tourism economy, and providing them with the knowledge and ability to travel where they choose is paramount. That’s partly where travel advisors come in. Travel advisors can, like their title suggests, advise those with disabilities on the best travel insurance plans, accessible tours, methods of transportation and even accommodations that fit the specific client’s needs. They can also take some of the pressure to research these important factors off of the client’s shoulders. As an advisor, it’s important to understand exactly what challenges clients with disabilities face, so they can successfully plan a vacation without any snags: “The word ‘accessible’ means something different to every person with a disability. It’s important to ask specifically what each person needs in terms of accessibility, instead of just assuming that what’s accessible for one person is accessible for all,” said Lee.

https://www.travelpulse.com/news/features/expert-advice-for-traveling-abroad-with-a-disability.html

The Minnesota Daily

Beginning in fall 2021, the Critical Studies Disability Collective will host the project that examines disability through the lenses of race, disposability and more. Illustration by Hailee Schievelbeinby Katelyn VuePublished May 4, 2021Starting next fall at the University of Minnesota, a new three year project will host virtual workshops, reading groups and speaker events focusing on the experiences of people with disabilities using a critical lens. The project, titled “Refusing Disposability: Racial and Disability Justice Toward Another World,” is hosted by the University’s Critical Disability Studies Collective and will cover topics like intersectionality and amplified vulnerability during the pandemic. The overarching theme of the CDSC’s project focuses on the campaign and hashtag that started when the pandemic hit, #NoBodyIsDisposable, to resist triage discrimination. As hospitals and medical professionals reached capacity during the pandemic, triage protocols applied a hierarchy system to prioritize providing treatment for certain patients over others. The campaign, #NoBodyIsDisposable, advocates for the resistance of triage discrimination, which many argue disproportionately denies treatment and minimizes the lives of people with disabilities, elders and more. “Before COVID 19, marginalized communities have had reason to fear bias in medical settings. We are terrified of being killed by the people who are supposed to care for us. Let’s protect each other and fight for the resources and policies we need to get through this emergency together,” read the #NoBodyIsDisposable campaign’s open letter to medical professionals around the country. A project lead and University professor, Dr. Jennifer Row, said that part of the CDSC project would examine the system of triage protocols to understand how and why medical professionals treat certain lives as more valuable than others. Three University graduate students formed the CDSC in 2015 to create an academic community to study disability at the University. Ultimately, the current goal of the CDSC is to establish a department with a major or minor in critical disability studies. “We are trying to engage folks in the study and understanding of disability as a sort of cultural site, so by that we mean not a medical problem or a medical issue that disabled folks need to fix,” said Dr. Angela Carter, CDSC co founder and co chair. “But instead … thinking and understanding disability more from the humanities and social science perspective. ”The CDSC’s project will also include workshops to support University instructors who want to develop new courses to advance students’ learning, grow academic scholarship and expand research on critical disability studies. “The University of Minnesota is really behind its Big Ten peers,” Row said. “[Critical disability studies] really is a prominent field that is being celebrated, explored and researched across the country and the U is direly behind because we have nothing. We do not even have an undergraduate minor. ”Another core component of the CDSC’s project is to create an online public access curriculum for instructors outside the University to learn about critical disability studies, integrate it into their courses and share knowledge. “The creation of a public access curriculum breaking down that boundary between the larger world and the ivory tower, creating that as a bridge and making sure that knowledge is facilitated in such a way that it is useful, usable and applicable by the public,” said Dr. Jessica Horvath Williams, CDSC co chair and project lead. Row said the CDSC plans to make a website for a public access curriculum that may include webinars, shared syllabi, and activities that can be adaptive for K 12 educators to teach their students. CDSC members plan for the first two years of the project to be virtual and the last year to be in person. The CDSC will invite activists, scholars, authors and artists to speak at events on various topics related to critical disability studies.

https://mndaily.com/267703/news/new-three-year-project-will-deepen-knowledge-on-disability-by-facilitating-virtual-spaces-and-discussions/

The Mental Toll of Disability Is Inflating — We Have to Do Something

The weight of living in a world that doesn’t consider disabled people’s needs is piling on. Something has to change. We live in a society that presumes disability is intrinsically tragic. In reality, for me and many others, being disabled actually comes with many beautiful things, including a vibrant and loving community. However, when the entire world is built without you in mind, the mental tax of living inflates beyond belief. There are 1 billion disabled people worldwide, and 1 in 4 American adults live with a disability. Yet even in countries where access is a legal right, our needs are an afterthought. In the U. K. , nearly half of all people living in poverty are disabled, and they are 28. 6 percent less likely to be employed than nondisabled people. In the early months of the COVID 19 pandemic, 6 in 10 COVID 19 deaths in the U. K. were disabled lives. Globally, disabled people are disproportionately impacted by natural hazards due to inaccessible disaster relief. It’s no wonder, then, that 32. 9 percent of disabled adults in the United States reported experiencing frequent mental distress. And that was in 2018 before being in the midst of a pandemic devaluing disabled lives. Clearly, something needs to shift. Kaley Roosen, PhD, CPsych, a clinical psychologist at the Toronto Psychology Clinic, says that disabled people’s lives can feel more chaotic because they need to rely on factors outside of their control, like transportation and housing, in order to function. “Living a life where a person feels very little of a sense of control due to depending on so many outside, often unreliable sources can lead to mental health issues including depression, anxiety, addiction, and eating disorders,” she says. For many disabled folks, mental health problems stem from outside influences, not from disability itself. “I think my mental health conditions are rooted in my inability to slow down and to breathe for a second for fear of ableist repercussions,” says freelance journalist John Loeppky, who has cerebral palsy and generalized anxiety disorder. For entrepreneur and diversity coach Sonya Barlow, living with chronic migraine means questioning her every move. “It causes me to double think what I do daily, who I am, and how I should be,” she says. Numerous factors contribute to the mental health challenges of the disabled community, but one of the most significant is global inaccessibility. “The burden of navigating an inaccessible world takes up a large mental and emotional load,” says Roosen. “That hypervigilance can be compared to living in a war zone. ”Many disabled people are blocked from socializing because accessibility is not a priority in venues, which can lead to intense feelings of isolation. “A lot of old pubs are not wheelchair accessible and when all my friends are going there, you do start to feel left out,” shares freelance journalist Faith Martin. Although laws like the Americans with Disabilities Act are designed to shield disabled people from discrimination, many are excluded by inaccessibility. In 2017, the company 1800wheelchair surveyed Americans who identify as disabled, those they live with, and their caregivers. Of the 554 people surveyed, 20 percent said they or their loved one face an accessibility barrier every single day. Being sidelined can be especially difficult when maintaining friendships. While nondisabled peers can make plans instantaneously, disabled people have to pre plan every detail. “It’s very hard to be different. I have to plan every night out point to point, otherwise I’ll be finished the day after because of fatigue, pain, and dislocations,” says student and freelance writer Niamh Ingram.

https://www.bezzyms.com/discover/mental-well-being-ms/health-the-mental-toll-of-disability-is-inflating-we-have-to-do-something/

Microsoft Takes Aim At The ‘Disability Divide’

Microsoft is committing to a broad a range of steps to become more inclusive of people with disabilities. Technology giant Microsoft is promising big steps in the coming years to make its products and workplace even more accessible and inclusive to people with disabilities. The company says that in the next five years it will roll out a host of accessibility improvements to products, boost disability hiring efforts and invest in programs to help increase graduation rates among college students with disabilities in science, technology, engineering and mathematics fields, among other efforts. “This new initiative will bring together every corner of Microsoft’s business with a focus on three priorities: Spurring the development of more accessible technology across our industry and the economy; using this technology to create opportunities for more people with disabilities to enter the workforce; and building a workplace that is more inclusive for people with disabilities,” wrote Brad Smith, president of Microsoft, in a recent blog post about the five year plan to address the “disability divide. ” Already, Microsoft employs a chief accessibility officer and offers an adaptive Xbox controller and other accessible technology. The company also has a hiring program specifically for people with autism. But the new initiative, which will be the focus of Microsoft’s annual Ability Summit this week, will mean an even stronger commitment to inclusion, Smith said. He described accessibility improvements to Microsoft 365 and Microsoft owned LinkedIn and GitHub as well as a new fund to help propel innovation to drive down the cost of assistive technology. In addition, Smith indicated that Microsoft will expand its inclusive hiring programs to reach more countries and people with a broader range of disabilities. The company will work with its suppliers to create a “culture of accessibility” and partner with other businesses and nonprofits to help ease the path to employment for people with disabilities, he said. “If there is one thing we have learned from 25 years of work on accessibility at Microsoft, it’s this: People with disabilities represent one of the world’s largest untapped talent pools, but we all need to act with bolder ambition to empower disabled talent to achieve more,” Smith wrote. After multiple delays, federal officials are plowing ahead with a long awaited Medicaid rule establishing standards for what counts as home and community based services for people with disabilities. With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services. In May 2021, 11 year old Ryan Larsen walked out of his elementary school in between classes. A year later, there are few signs of the boys whereabouts.

https://www.disabilityscoop.com/2021/05/05/microsoft-takes-aim-at-the-disability-divide/29325/

Telling a potential employer about a disability in a remote-work environment

This article was published more than 1 year agoReader: I took early retirement last year. Shortly thereafter, I decided I wasn’t quite ready to stop working. With the coronavirus pandemic in full swing, I went back to school to become a paralegal. This worked out perfectly, as I am disabled and use either a walker or a cane, and the virtual classes were easy to attend. I am starting to apply for paralegal positions. Due to the continuing pandemic, the work is listed as remote, and the interviews are virtual as well. At what point in the process do I let a prospective employer know I am disabled? I don’t want this to hinder any opportunities, but I also don’t want to surprise them with this information and make it appear as though I was hiding something. What’s the best way to disclose a disability in this virtual job hunting environment?Karla: If a prospective employer thinks your skills are a fit for the job, and your disability doesn’t interfere with your performance which it shouldn’t do, if the remote job is anything like your virtual classes then it shouldn’t matter when you disclose. But I respect your concern about springing an unexpected challenge on a potential employer. Work Advice: The delicate issue of disclosing a disability during the application processInstead of thinking of it as “disclosing” anything, approach it in the spirit of performing due diligence on whether this job and this workplace are a good fit for you, because you’re confident you’d be a great hire. During the interview or while you’re considering an offer, ask: Does the employer intend for the job to remain remote once the coronavirus exposure is no longer a concern? Is remaining remote an option? If not, then you will need to know how accessible the office is for people who use mobility aids elevators, stairs, emergency evacuation plans. As I’ve said before, if any good comes of the pandemic, it will be the confirmation of just how many office jobs can be performed from home as effectively as from a commercial office. Although some tasks legitimately require in person interaction for legal or security reasons, it’s harder for employers to arbitrarily deny remote work options if they have a year’s worth of evidence that their workers can be just as productive from home. Work Advice: My co workers are grumbling about my telework privilegesReader: A customer of our office has offered me a one week stay, at no charge, at a vacation home during the summer. Our office staff all serve this customer, and I am no more helpful than the person next to me. The customer is thrilled to gift the week, but I feel so guilty that others don’t have the same opportunity. Do I take the offer or turn it down? I somehow think I would feel better turning it down. I literally couldn’t fall asleep last night thinking about it. Karla: Pros of accepting this generous offer: It would be a lot of fun. Cons of accepting:If you have a long established personal friendship with this customer outside of work, and the vacation was given in the context of that relationship, it might be a different matter. Otherwise, you should not accept gifts from a client that you cannot share with colleagues, with one exception: A customer who feels you have been particularly helpful can write a note to your boss saying as much.

https://www.washingtonpost.com/business/2021/04/29/telling-potential-employer-about-disability/

7 Core Arguments Of Disability Rights

Close up of a wheelchair symbol on a brick roadThe “Disability Rights Movement” is partly built around a series of arguments about disability itself. It’s about what disability is, and what disabled people want –– and don’t want. And as arguments, they are also responses to implied counter arguments –– things that other people believe about disability that disabled people don’t agree to. Many versions of these core beliefs are well known and easy to find. Here are just a few examples offering a variety of perspectives within roughly the same basic theme:The Americans with Disabilities ActThe full text of this 1990 disability rights laws starts with Findings and Purposes. It is an overview of the many ways disabled Americans are discriminated against, and the main approaches the law will use to address those systemic problems. The United Nations Convention on the Rights of Persons with DisabilitiesAppropriately for an international document, the Guiding Principles of the Convention read as a universal statement of shared beliefs and goals for disabled people’s rights in all societies. In addition to the usual focus on inclusion, equal opportunity, and accessibility, the convention also notably includes “equality between men and women,” and the rights of children with disabilities, as integral parts of disability rights. Sins InvalidSins Invalid is a California based disability arts and performance group whose mission is anchored in a particular vision of disability justice. This is a more holistic and ambitious standard than the more legally and individually based concept of “disability rights. ” Sins Invalid’s Ten Principles of Disability Justice expresses a distinctly collective, anti capitalist perspective, with an emphasis also on interdependence, cross disability cooperation, and solidarity across all liberating social movements. These principles are about more than access to society as it is, but also about remaking society to be more just and humane for everyone, including disabled people. Global Disability Rights NowThis is a “resource center’ offering information and guidance on disability rights globally, with particular projects in several specific countries. It is a partnership of a number of well known and respected disability rights organizations. The website includes 10 Principles of Disability Rights, which focuses on practical, concrete ways of achieving disability rights goals. It also acknowledges some limits on what disabled people can expect in any given situation, while at the same time emphasizing the need for enforcement and real consequences for inaccessibility and disability rights violations. “Nothing about us without us. ”This phrase is as close to a “grand unified theory” as can be found in disability culture. Since about the 1990s, “Nothing about us without us” has been an influential disability rights slogan, first in South Africa’s disability rights movement, then disseminated widely in the United States and around the world. It expresses a goal disabled people want to achieve. At its best, it is also a pledge for how the movement itself must be conducted, with disabled people always involved and in the lead. These and other lists of disability rights principles and goals are each important and valuable in themselves. It can also be useful to revisit, restate, and remix them. We do this partly to clarify what we believe so we can more fully draw out the implications for policy and our own everyday behavior. Reviewing and re crafting the core arguments of disability rights can help all of us –– non disabled and disabled alike –– think about how our own beliefs about disability issues stand in relation to others in the movement and to society at large. Here then is another attempt to draw out the kind of strong and meaningful principles that shape the aspirations and tactics of today’s disability rights movement:

https://www.forbes.com/sites/andrewpulrang/2021/04/22/7-core-arguments-of-disability-rights/?sh=5bd2b9955471

Disability in children and adolescents must be integrated into the global health agenda

Childhood disability is not a priority in health systems. A recently published article in the BMJ by Cieza and colleagues argues why this needs to change. Firstly, the number of children with disability is increasing. More children are surviving, but not all of them are thriving. The article explores trends in prevalence of a number of health conditions associated with high levels of disability comparing data from 1990 and 2019. Results show that numbers of children and adolescents living with disability rose substantially owing to population increases with some conditions such as migraine, asthma, hearing impairment or injuries exceeding 100 million cases among those aged <20 years. This means more children need health services to optimise their functioning. However, most health systems cannot deal with the current needs of children with disability, let alone meet the rising demand. Secondly, children with disability often need specific rehabilitation services related to their impairment or functioning limitations. Yet these interventions often do not exist, are underdeveloped or under resourced. When available, services are often costly, not physically inclusive, or accessible only in urban areas. The result is poor quality of services an issue often raised by children with disability and their caregivers. Lastly, access to care is a human right. Children with disability repeatedly face barriers to care causing suffering, hardship, and isolation. The greatest obstacles they encounter are negative attitudes. Without change, these children will continue to be denied access to services by health providers. Because of all these factors, disability urgently needs higher priority in child and adolescent health agendas. To move forward we need a shift of attitudes and the commitment of all relevant parties in the disability and health sectors. Governments need to scale up service delivery with a strong focus on primary healthcare. Rehabilitation services should be expanded to reach all children in need.

https://www.who.int/news/item/19-04-2021-disability-in-children-and-adolescents-must-be-integrated-into-the-global-health-agenda

3 Ways Disability Allyship Can Go Off Track

It’s a good time to rethink not only how non autistic or “neurotypical” people can best support autistic people but also how non disabled people in general can do better in supporting people with any kind of mental, developmental, or physical disability. There’s no shortage of good intentions. Most people if asked would say that they at least want to do right by people with disabilities. But being a good disability ally requires more than goodwill. The disabled community is well past the point of being satisfied with simple recognition or mere shows of support, as we might have been 30 years ago. We’re not even looking for advocacy, if it means non disabled people speaking for us, defending their perception of our rights without our full participation or consent. It’s always important to do the right thing when you can, and to be counted on the side of disabled people and our needs. But it’s even more important to discover and center disabled people’s concerns, priorities, and preferences, even if you don’t always understand or agree with them. We need allies fighting with us, not just advocates fighting for us. Fortunately, we seem to be gaining more genuine allies every year. That’s worth celebrating. Still, as more people learn about disability issues, it’s important to be alert for ways that disability allies can lose their way. The following are three of the most common ways that even the best, most committed disability allies can go wrong. 1. Listening to disability awareness seminars instead of disabled people. Articles and training on disability issues and etiquette are certainly valuable. They can be especially useful for people just starting to learn disability issues. Formal training can teach the basics of how to behave towards disabled people in social situations. You can learn a bit about how everyday accessibility problems affect disabled people. And you can start to get some rough guidelines on common questions, like whether or not to ask disabled people about their disabilities, or what terminology to use and what to avoid. But disability awareness seminars and webinars are no substitute for listening to actual disabled people. Our individual views and preferences don’t always match the standardized rules of “disability awareness. ” Some of us want to be left alone; others crave interaction. Some of us invite questions and are happy to explain our experiences. Others of us feel besieged with people’s curiosity and want to choose when and how we will “educate” people about disability. Practical accessibility affects each disabled person differently too. Some of us are more bothered and confrontational about it than others. And we have different opinions on disability terms. Some, like the “R word” for intellectual disability, are clearly off limits. Others, like whether to say “person with a disability” or “disabled person,” are still open to debate and personal taste. Rules and philosophies learned in advance can help, but they will only get you so far. The worst thing you can do is lecture disabled people you meet in real life on how we should process our own experiences. Yet, this happens, a lot. It’s entirely possible, even common, to meet disabled people whose views on disability are different from what you’ve been taught. Regardless, never tell or imply to a disabled person that you understand disability issues better than they do – even if you have reason to believe that might really be true. If you find yourself thinking that a disabled person’s views on disability issues are wrongheaded or uninformed, and that it’s your job to enlighten them – stop yourself. Think about it carefully, and proceed only with great caution. Or, leave it alone, and respect the opinions and choices of the disabled person you are talking to.

https://www.forbes.com/sites/andrewpulrang/2021/04/14/3-ways-disability-allyship-can-go-off-track/?sh=699397227a81

'It's Mean-Spirited.' A Blind Disability Advocate on How Georgia's New Election Law Could Make Voting Even Harder

Gaylon Tootle, a Black and blind disability advocate in Augusta, Ga. , has been fighting to make it easier for people in his state to vote for years. Georgia’s electoral system posited challenges for disabled voters even before the state enacted a sweeping overhaul of its election law on March 25, becoming among the first of hundreds of restrictive voting measures introduced in state legislatures across the country this year to be signed into law. During the 2020 presidential election, Tootle struggled to fill out his own absentee ballot. “Hell, I couldn’t do nothing with it,” Tootle says. His wife had to help him out. That’s in part why Tootle who spends his days working as an independent living advocacy coordinator at nonprofit Walton Options, which serves thousands of disabled residents across 16 counties in the state has been working nonstop, like many in Georgia, to evaluate the implications of the law and ensure disabled voters can still exercise their right to vote. More than a quarter of adults in Georgia have a disability, according to the U. S. Centers for Disease Control and Prevention. The new law, which Republicans allege will restore trust in the electoral system, contains close to a dozen restrictions. Disability activists have criticized the law’s motivations for being misguided given there was no widespread fraud in recent elections and said its restrictions are ableist because it will present additional barriers for disabled voters. “As a Black and blind voter here in Georgia, I’ve already had issues with the system,” Tootle tells TIME from his office at Walton Options where he spends most of his time on the phone helping disabled Georgians navigate through all sorts of accessibility challenges, from housing to employment. “This stuff is in your face. It’s mean spirited, there’s no concern: how will it impact my people?”The Georgia chapter of ADAPT a national advocacy group for disabled Americans said in a statement: “We all strongly condemn this new law as Jim Crow 2. 0 which suppresses all voters because it is ableist, racist, colonialist, and deplorable. ” Maria Town, president and CEO of the American Association of People with Disabilities said in a statement that she took issue with the new law “increas requirements for identification that people with disabilities are less likely to have, and restrict the use of ballot boxes. ” She urged Congress to pass federal legislation, like the John Lewis Voting Rights Advancement Act, to preserve and expand voting access nationwide. “Disability and voting rights advocates have worked for decades to undo racist and ableist voting policies that limit access to the polls,” Town said. “Senate Bill 202 in Georgia is a direct reaction to the record turnout in the 2020 election, particularly among Black disabled voters. ”Tootle and other disability advocates are also concerned about restrictions related to out of precinct ballots and volunteers providing food and water to voters. Voters can no longer cast a valid provisional ballot if they are at the wrong precinct but right county before 5 p. m. under the new law. It’s a rule that could especially pose an obstacle for disabled voters who may be confused about where to vote. It’s not always obvious which precinct to vote at given the possibility for last minute changes to polling sites. Now, provisional votes cast after 5 p. m. will only count if a voter signs a statement saying they could not arrive at their designated precinct before the voting period ends at 7 p. m. “You’re not taking into account that I may have…a cognitive disability or learning disability, which sometimes causes me to simply make mistakes,” Tootle says. “You’re going to have some Black and brown folk that go in there, simply made a mistake and their vote will be automatically cancelled. ”

https://time.com/5953063/disability-advocate-georgia-new-election-law/

South Seattle Emerald

As many students receiving special education services in what Seattle Public Schools calls “intensive pathways” returned to in person learning in early April, some local educators find themselves questioning whether their students will have improved opportunities for inclusion, or if the opposite is true. Supported by a federal law, which states that all students should learn in the “least restrictive environment,” inclusion requires that students with disabilities spend as much time as possible learning with their peers who do not receive special education services. While much attention has been focused on the myriad needs of students returning to hybrid, in person learning, these teachers are concerned that inclusion of students with disabilities will be overlooked, and their need to be included will be unmet.  During the pandemic, one terrible example of exclusion was discovered in SPS at View Ridge Elementary School. According to a story by KUOW, the principal, assistant principal, and other staff members seem to have thought the least restrictive environment for an 8 year old Black boy named Jaleel was to lock him in a caged play area for hours at a time where he sometimes ate while sitting on the floor. Though state law requires any instance of “restraint and isolation” to be reported, there was no paper trail, and while Jaleel’s case may or may not be an isolated event, it brought to the fore existing questions about whether there was a tendency to exclude BIPOC students and particularly Black students receiving special education services in SPS. Joy Springer, a former middle and high school teacher who is now an occupational therapist at Jane Addams Middle School, a union leader, and part of an Education Leadership Cadre who fields questions from other OTs across the district, broke it down for the Emerald this way:”Black and Brown students are being put into these intensive service pathways, where they’re even more segregated from their peers. So they get dinged for being Black, and they get dinged for supposedly having a disability, and then they’re kind of shuffled off. They’re in a Gen[eral] Ed[ucation] school, but their classroom is hidden away from the rest of the school, they’re not really integrated, and they don’t have as much time accessing their peers. This really hurts them and it also contributes to the school to prison pipeline. A lot of our students who end up in prison ultimately have a disability; the overrepresentation of youth disability in prison is astronomical. ”In the United States, if a Black child receives special education services at some point during their K–12 education, they are more likely to be arrested than not be arrested before the age of 28 , says a 2017 report from the American Journal of Public Health. Anthony Washington, who teaches in the Social Emotional Learning intensive pathway at Garfield High School and Humanities at the Academy for Creating Excellence , told the Emerald that inclusion takes on extra importance for Black students in a city as white as Seattle is. Washington elaborated, “When you’re thinking about just being able to function on a daily basis in our society. Having the ability to be able to communicate, and understand and critically think about multiple perspectives, is absolutely vital to survival …The only way you can do that is experiencing other people, other perspectives. ”“Exclusion is extremely important … My kids [students] are segregated. I’ve called them political prisoners to try to get people to understand what my kids deal with on a day to day basis, and their IEP’s [Individual Education Program] relationship with the criminal justice system at any given moment. So inclusion can be the difference between the two. Figuring it out, having the perspective necessary to pick up on certain things, and being excluded, and feeling excluded, and following that path to where it leads which is usually not positive. ”

https://southseattleemerald.com/2021/04/14/sps-educators-confront-issues-of-race-and-disability-as-students-return-to-schools/#more-64219

Is disability the last bastion of the representation debate?

Back From #MeToo to Black Lives Matter, as a society we have been discussing the relationship between representation and equality more than ever over the last few years. But while progress is being made in so many areas, people with disabilities are still struggling to find a voice above the accepted narrative, says Ross Lannon, the 27 year old blogger and multi media content creator behind A Life on Wheels. He says: “While we still have such a long way to go, I think things have improved over the last few years. “On TV and in the media now, you are starting to see all sorts of people: people of different shapes and sizes, different races, different sexual orientations. But disability is one thing that always seems to get left behind. ”On our screens, for example, people with disabilities are often one dimensional, he says. They tend to be portrayed as struggling with their disability, rather than dealing with all the same highs and lows of life as everyone else. “There are some positive disabled characters, but nine times out of ten their sole purpose in the programme is based around their disability,” says Ross, who was diagnosed with spinal muscular atrophy Type 2 when he was a toddler. “When you think that something like 22% of the population has some form of disability, you have to question how that counts as representation. ”It matters, he tells pharmaphorum, as it creates role models and lets young people know that their disability does not define them. “We need to learn to break down those barriers. There are people in the world who look a little different or who have mobility issues, but we are just the same as everyone else. Just because we have to do things a little different, it doesn’t mean that we can’t succeed. “The next generation need a better level of representation so they know they know they can achieve what they want to achieve,” said Ross. A resonating hobby A Life on Wheels started out as Ross’ hobby back in 2017 and has been growing steadily ever since. The blog, which covers lifestyle topics and reviews events and products, was even nominated for a National Diversity Award last year. “It started as a hobby, just a way of documenting my life as a young man with a disability that I could look back on in years to come,” he says. “It grew and grew and it is now a real passion of mine. I am a bit of a cheeky chappie, so I say anything and everything on there. I think people enjoy the honesty and the comedy of it. ”Crucially, his wheelchair is incidental, not central, to the content. Recent articles, for example, have included a look at trolls online and covered Ross’ lockdown diaries. Says Ross: “It’s not purely about disability because I don’t like being put in that box. Of course, I touch upon access and disability, but that’s not the main focus. I just want to make people smile and live my life. “I want people to get to know Ross, that I have my own character and my own personality. There is more going on in my life that being sat here on four wheels. ”Vision of possibilities This approach has gained Ross a legion of fans, and he often receives emails and messages to thank him for his work. “The other day someone reached out to say they had shown my website to a class of kids with disabilities to show them the things that they could do – so these kids could see that I have been on the beach on my wheelchair, that I have been roller skating, abseiled and driven a speedboat,” says Ross, who lives in Cornwall, UK. “It is great to show them that regardless of being in a wheelchair, you can still do so much. ”He also hopes his work is helping to break down some of the preconceptions about disability that can feed well intentioned but offensive comments. “I do get frustrated sometimes when I’m doing a mundane task and someone says something like ‘wow, you are so inspirational’.

https://pharmaphorum.com/views-and-analysis/is-disability-the-last-bastion-of-the-representation-debate/

COVID-19 amplifies the complexity of disability and race

Professor, Critical Disability Studies, University of Toronto Associate Professor of Social Work, McMaster University Postdoctoral Research Fellow, Department of Physical Therapy, Faculty of Medicine, University of Toronto Lecturer, Disability Studies at Kings University College, Western University Karen Kume Yoshida receives funding from the Social Sciences and Humanities Research Council. . Ann Fudge Schormans receives funding from the Social Sciences and Humanities Research Council. Chavon Niles and Susan Mahipaul do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment. McMaster University and University of Toronto provide funding as founding partners of The Conversation CA. McMaster University, Western University, and University of Toronto provide funding as members of The Conversation CA FR. Western University provides funding as a member of The Conversation CA. View all partnersIn Canada, COVID 19 has exacerbated long standing institutional and systemic inequalities for disabled people. And these inequalities are rooted in ableism. Ableism represents beliefs, social practices and policies that produce and privilege expectations of able bodiedness and able mindedness. Resulting in the marginalization, exclusion and oppression of people with mind/body differences. Disabled people’s identities are also intersectional they may be racialized, gendered, elderly, may live in poverty and/or are part of newcomer communities. This viewpoint further reveals the persistent and invisible injustices disabled people experience and is important for developing policies, resources and supports for those affected by the pandemic. Read more: What is intersectionality? All of who I am The term intersectionality, coined by Black feminist legal scholar Kimberlé Crenshaw, illustrates how the systemic oppression Black women experience differs from that of Black men or white women because of the intertwining effects of various systems of oppression . An intersectional lens allows us to examine how peoples’ different social identities are interconnected. How different contexts create privilege , and/or oppression . The following are stories our colleagues have shared with us. Jeff Preston is a white man who has lived with disability all his life. He grew up with the support of his family, attended school and earned his PhD. He is now an assistant professor in Disability Studies at King’s University College at Western University in London, Ont. He uses an electric wheelchair and requires assistance from his attendants. This assistance allows him to get out of bed, get dressed and get to work. “What has been important here is my day to day. My attendants and access to resources. On Day 1 of the pandemic one of my attendants resigned as they were heading home. Another one … now is not coming back, so I am down two attendants. If I lose another, I will be in a tight spot. How will I get out of bed? How can I work? What happens if I get sick?”Preston is privileged as a white man and a university professor who was raised in a family with financial and social resources to support him and his education. He receives direct funding to hire attendants to support his daily activities, which the pandemic complicated. Government mandates to stay at home and follow strict physical and social distancing guidelines assume that everyone can abide by them. For Preston, like other disabled persons, these mandates do not consider his need for attendants to get on with his daily life.

https://theconversation.com/covid-19-amplifies-the-complexity-of-disability-and-race-157933

The Intersection of Disability and Climate Change

Climate change threatens all of us. But for those of us living with a disability an estimated 15% of the global population the threat, compounded by discrimination, marginalization, and other pre existing inequalities, is even greater. Master’s student David Liebmann, a HGSE Sustainability Fellow, wants to bring awareness to this threat, especially in the world of education a world where people with disabilities often lack access and face discrimination. Liebmann, a veteran educator who has worked in independent schools for almost 30 years, previously taught environmental studies and English at schools in Maine, Georgia, Pennsylvania, New York, and Massachusetts. Here at HGSE, Liebmann researches the intersection of climate change and disability. He is presenting his research on April 1 at “The Intersection of Disability and Climate Change,” an event sponsored by the Harvard Graduate School of Education. We asked Liebmann to talk to us about the important work unfolding in this new field. What is this new area of study, and why is it important? Climate change will be the central political and moral issue of the 21st century. It will affect everyone, but not equally. For example, one oft cited estimate suggests 200 million people will be climate refugees by 2050. According to the World Health Organization, 15% of the global population has an intellectual or physical disability, so 30 million of those climate refugees will require different kinds of support. That jumped out to me and made me begin to research the intersections of climate change and disability. Theres not much formal study on this yet, though my research points to a brief letter in the November 8, 2019 edition of Science that seems to have initiated the academic communitys response. How exactly does climate change affect people with disabilities? Simply harder than people without. Broadly speaking, many people with disabilities live in greater poverty with more significant challenges than everyone else. Imagine a hurricane: people with disabilities would need early access to shelter, social supports, and medical assistance as needed. As potential climate refugees along with everyone else affected, some people with disabilities will require a different level of support in terms of access to food, shelter, and transportation. If Hurricane Sandy or Katrina or wildfires or summer heat waves or flooding become norms, everyones needs shift into a higher category. How does this work intersect with education? Educators are often the first professionals to do sustained work with kids with disabilities, broadly defined. Teachers will also be called upon in coming years to educate all students about climate change, climate science, and adaptation to a warming planet. Schools include diverse individuals of many backgrounds, so it makes sense for teachers to begin to think about ways they can be supportive, get involved in advocating for the rights of disabled students, and take action together. A mantra of the disabled community is Nothing about us without us. Its vital to remember that the work must be a partnership, whatever it looks like. What drew you to this emerging field? I was a student of the natural environment as an undergrad after growing up as a hiker and camper in Georgia. As I launched into teaching, I encountered students with disabilities and wanted to support them, so the two things simply co existed for many years. Also, as we all learn, it is common for folks as they age to develop various disabilities. This certainly happened to my late parents, who had mobility issues. After they passed, there was an infamous European heatwave in summer 2019 that took many lives. I put all those things together and came to discover this work.

https://www.gse.harvard.edu/news/21/03/intersection-disability-and-climate-change

Disability Advocates Raise Concerns About Sweeping Voting Bill

Texas The Texas Senate is taking up a sweeping piece of legislation that seeks to stifle local efforts that make it easier to vote. Republicans said the goal is to ensure no one takes advantage of the electoral system, but some advocates believe the bill is targeting some of the most vulnerable voters.  To apply for an absentee ballot in Texas, voters must be age 65 and older or living with a disability. During the November election the Texas Supreme Court ruled the lack of immunity to the coronavirus does not qualify as a valid reason to expand voting by mail, but they did allow voters to assess their own health. In its introduced form, Senate Bill 7 would seek to change that by requiring voters to show proof they are living with a disability.  “What weve heard most about, and when I say heard, I mean sworn testimony before the committee from prosecutors from law enforcement officers and I mean prosecutors both Republican and Democrats, from election officials about mail ballot fraud, in particular, folks claiming disability who do not in fact have a disability,” Sen. Bryan Hughes, R Mineola, said. Advocates for those living with disabilities argued the bill unfairly singles them out, particularly the provision requiring those seeking mail in ballots to provide written documentation from the security administration, veterans affairs, or a licensed physician.  “Voters with disability just want to vote, they just want to be able to go to the polls and have their vote counted, unfortunately, and some, because in some circumstances, those voters have support needs that need some sort of accommodation, we treat them differently,” said Jeffrey Miller, a policy specialist for Disability Rights Texas.  The proposed legislation would mandate anyone assisting voters in completing ballots to fill out an additional form explaining their relationship, as well as the manner and reason why assistance is necessary. This also applies to caregivers who drive voters to polling locations and help them there. The bill also allows poll watchers to record voters who need assistance.  “We dont trust people that assist people with disabilities. We think theyre probably trying to exploit them in some way,” Miller said.  GOP lawmakers are looking to tighten Texas’ election laws for the sake of security and integrity, despite the lack of evidence showing widespread voter fraud. I think this is a very problematic piece of legislation, said Myrna Perez, a native Texas and the director of the Brennan Center for Justices Voting Rights and Elections Program. This is just one other barrier where it looks like the politicians are trying to choose their voters rather than have their voters choose them.  SB 7 would also prevent counties from extending early voting hours, ban drive thru voting, and prohibit counties from using grant money to administer elections.  I think all voters need to fight back. I think all voters need to tell their politicians clearly that they want a free, fair and accessible vote, that we are all better off when all of us who are eligible are participating and voting,” Perez said. The bill would also establish an online tracking system of a mail in ballot, a less controversial aspect of the bill, which Hughes argues eases the process.  “We’re making it easy to vote, but making it hard to cheat. Some people dont like that,” he said.

https://spectrumlocalnews.com/tx/san-antonio/news/2021/04/01/disability-advocates-raise-concerns-about-sweeping-voting-bill-

Disability Must Stop Being Workplace DI’s Poor Relation, Says Disabled Conservative Peer

The Conservative peer charged with chairing a groundbreaking commission reporting on critical issues feeding into the U. K. government’s National Strategy For Disabled People says it’s high time disability inclusion is accorded equal weight to other parts of the diversity spectrum. Last week, the Centre for Social Justice’s Disability Commission published “Now Is The Time,” a report exploring ways of addressing the country’s disability employment gap. Lord Kevin Shinkwin , who was born with Osteogenesis imperfecta, also known as brittle bone disease, says lawmakers are failing to offer disabled people similar safeguards to those enjoyed by other populations with protected characteristics. “Sadly, it is still the case today that we have major firms beating themselves across the chest and saying ‘hey, look at us – we are really committed to D&I and then not addressing disability at all,” says Shinkwin. He continues, “I know that there are some very large firms, I wont name them, who still produce standalone annual D&I reports that don’t even mention disability. ”Addressing the core actions parliamentarians can take on this, Shinkwin says, “Weve had mandatory gender pay gap reporting since 2017. It is the law for organizations to report where they are on this under threat of sanction. So why cant there be a read across for disability?”The Conservative peer, who enjoyed a 20 year career working in various roles across the not for profit sector, before being introduced to the U. K. House of Lords in November 2015, is keen to see better outcomes for a population segment for which the disability employment gap currently stands at 52% of disabled people in work, compared to 81% of non disabled people. “Perhaps we will have to phase in the change gradually,” he says. “But if you believe in the principle of equality of opportunity, the government is not treating groups with protected characteristics equally, which is a fundamental premise of equality legislation. ”Shinkwin intends to table a Private Members’ Bill when parliament reopens in May mandating enhanced disability reporting in the workplace. He firmly believes voluntary schemes like the Disability Confident scheme need to be more robust and that Prime Minister Boris Johnson’s National Strategy for Disabled People should be supported by a legislative framework and enforcement regime with teeth. “Some people say and I’ve heard colleagues say, ‘We have a philosophical objection to mandating’, says Shinkwin. “Well, as both a conservative and a disabled person, I have a philosophical objection to failure and exclusion. At the moment, weve got both,” he continues. “And so, without enforcement, the carrot doesnt work. We need to make the carrot more attractive, but also have a bit of a stick. ”Further adding, “I’m not in the business of berating businesses but there are going to be firms who are much less inclined to act. We need them to be incentivized but also know that there are penalties for non compliance. “The truth is, over the past 26 years, we havent made nearly as much progress as we should have. Indeed, some disabled people say we are going backward. ”The Centre for Social Justice’s submission was preceded by an open letter to Prime Minister Boris Johnson signed by the likes of Post Office CEO Nick Read, Schroders CEO Peter Harrison and Clifford Chance Global Managing Partner Matthew Layton urging the PM to make good on his promise of a truly transformative National Strategy for Disabled People. Concerning its recommendations on improving the employment prospects of disabled people, the “Now is The Time” report further addressed a number of critical areas. These include, in addition to introducing mandatory workforce reporting, increasing supported routes into employment, reforming the government’s Access to Work scheme to support workplace adjustments and extending tendering requirements for government procurement to incorporate disability employment metrics.

https://www.forbes.com/sites/gusalexiou/2021/03/30/disability-must-stop-being-workplace-dis-poor-relation-says-disabled-conservative-peer/?sh=7b6643bc89ff

Some MI Disability Rights Advocates Call Vaccine Rollout Inadequate

Starting Monday, Michiganders age 16 and older with disabilities or certain medical conditions will be eligible to receive the COVID 19 vaccine. Breannah Alexander Oppenhuizen is with the Michigan Disability Rights Coalition. She said little has been done at the state level to ensure prompt access to the vaccine for these vulnerable communities. “Were seeing even in trying to register people in the places where we can actually get them registered, theyre not getting appointments until into the May, June appointment slots, she said. Alexander Oppenhuizen said it’s also been difficult to register people with disabilities, and those who speak a language other than English for a vaccine slot. “So for us to be now a year from the initial discovery of the COVID virus, and to still be so behind in planning for the most vulnerable communities, she said. Its startling, and something that we need to discuss further. The Michigan Disablity Rights Coalition has been raising these concerns with the state since December. Little planning is being done, and ultimately commerce is being prioritized in the vaccine distribution and the people, Alexander Oppenhuizen explained. If commerce wasnt being prioritized, Alexander Oppenhuizen said there would have been more planning from the state to address issues like transportation access to a vaccine appointment for those with disablities. So there was concern about if people use Spec Tran to get to [their] appointment, am I going to have issues getting to my appointment on time?, she said. There are small, localized issues that could have been dealt with better have they been heard by the institutions who have the ability to set priorities. Alexander Oppenhuizen said the decentralized nature of vaccine distribution, from scheduling to administering the vaccine, creates a series of challenges for communities vulnerable to the virus.  

https://www.wkar.org/health/2021-03-22/some-mi-disability-rights-advocates-call-vaccine-rollout-inadequate#stream/0

Local providers advocate for state support of disability services

March 9 marked Disability Services Day in St. Paul, an annual opportunity for disability service providers around the state to advocate for the needs of their clients and facilities. Because of COVID 19, the event had to be moved online this year, so local advocates didnt get any face time with legislators. The pandemic has created significant limitations for Nobles County Developmental Achievement Center . Its been really difficult when you try and operate with half capacity, said Bob Schreiber, DAC director. The DAC is allowed to have more than half of its normal capacity, but its not back to 100% yet. Pre COVID, the center could serve 57 people. Currently, the state is allowing 42 at a time. On the minds of local providers this year is the call to raise the U. S. minimum wage. One of the services offered at the DAC is matching clients with a job in the community, such as housekeeping at AmericInn, assembling filter bags for Bioverse and shredding documents for Avera and Johnson Builders & Realty. These jobs give clients a sense of purpose and an important role in the community. That means so much to them, Schreiber said. Thats the reason they get up and put their pants on. However, due to clients disabilities, they are often unable to work at the same level as an average minimum wage employee. The government has created a designation called a special wage, where clients are paid based on their production. Their wages are re evaluated locally at least every six months. Its a fair and equitable wage, Schreiber said. If the minimum wage is raised, explained program manager Tina Stamer, the special wage would be eliminated. These clients would have nowhere to go, she said, adding that DAC clients are among the lowest functioning in the area, so they dont have the ability to go out and earn a regular minimum wage. One issue service providers advocate for year after year is improved funding for disability services. Direct care staff are often underpaid. Their jobs are difficult and require significant physical and emotional stamina. The DAC would like to offer competitive wages, but they can only pay so much, due to funding from the state, Schreiber and Stamer explained. While the DAC had to be closed during COVID, managers opted to pay staff their full wages and insurance, in an effort to avoid losing the employees. The most difficult part of the pandemic, though, has been missing the clients. We are a huge part of their life, Stamer said. Were with them a little over six hours a day. Clients have missed the staff, too. Theyve loved being allowed back as the governor turns the dial on loosening COVID restrictions. Its heartwarming to see their faces after that long sabbatical, Schreiber said. Thats whats kept me in this job for 30 years. Stamer agreed. Were not looking at production; were looking at people, she said.

https://www.dglobe.com/news/local-providers-advocate-for-state-support-of-disability-services

How Germany violates conventions on disability rights

Germanys sheltered workshops for people with disabilities exist in breach of a UN treaty. Now the European Parliament has voted to phase them out but Germanys 3,000 workshops may not be going anywhere. It is a bright sunny day at the Westhafen canal, an industrial area of Berlin where factories and cranes tower above from all sides. It is the end of the workday at one seven story concrete building. Employees wearing masks are streaming out, being helped aboard minibuses by staff members in high visibility jackets or heading to the nearby train station. This is a sheltered workshop, where all employees have some form of mental or physical disability . These workshops have existed in Germany in some form for over 50 years. But this month the European Union adopted a new disability strategy which calls for the end of the workshops. Berlins largest workshop has operated on a reduced scale during the pandemicA whole spectrum of people work here, from those with learning difficulties to people with serious physical disabilities, managing director Dirk Gerstle said, sitting in a spacious, sunbathed room by the canal that serves as the facilitys art workshop. The BWB workshop is Berlins largest, with some 1,600 employees, and is one of more than 3,000 in Germany that employ a total of about 320,000 people. The employees take on a wide range of tasks, from artisanal labor to metal and woodwork, packaging confectionery and administrative tasks tailored to their experience and ability. Built into the mandate of the workshop is a responsibility for the care and rehabilitation of the employees, Gerstle said. The social aspect of their daily life, as well as psychological and physical support, is just as important as the work that they do. Gerstle described the employees as a community. Article 27 of the UN Convention on the Rights of Persons with Disabilities, which was ratified by Germany in 2008. requires signatories to promote the acquisition by persons with disabilities of work experience in the open labor market. By not banning workshops, EU member states are still failing to meet their obligations, Katrin Langensiepen, a German Green and a member of the European Parliament who helped sculpt the blocs new disability strategy, told DW in a statement. Langensiepen, who is the first woman with a visible disability to be elected to the European Parliament, is the author of a report that calls for the phasing out of sheltered workshops. Her report, approved by a large majority in Strasbourg last week, demands that EU member states ensure that sheltered workshops should be limited to an option for a temporary period for people with disabilities in their working life cycle [and] speed up deinstitutionalization. The European Parliament has sent a clear signal against the segregation of people with disabilities, Langensiepen said in her statement. Instead of promoting old systems that make people with disabilities invisible, we are advocating for strengthening social alternatives where people with and without disabilities work together. Langensiepen is the first woman with a visible disability to sit in the European ParliamentUnder Germanys current model, the primary purpose of sheltered workshops is to integrate people with disabilities into other jobs. But in fact fewer than 1% or people manage this transition. In a typical year at the BWB, Gerstle said, 10 employees might move to other jobs, or about 0. 6% of his workforce. One obstacle is the fact that the workshops have to operate as for profit businesses. This means that in order to pay employees and exist under the legal framework, there are economic targets that have to be met.

https://www.dw.com/en/how-germany-violates-conventions-on-disability-rights/a-56901202

International Women’s Day Challenge: Choose To Be Disability Inclusive

Una Fonte, a disability and feminism advocateEvery year in March we mark International Women’s Day, a day for celebrating women but also for highlighting the struggles and inequalities that still exist for women around the globe. This year the theme selected is “choose to challenge”. The “choose” aspect of the theme feels especially poignant since the last few years have seen more people than ever come to realise that the work of social justice must not be passive or performative, it requires real engagement and an authentic commitment to action. It is also an important reminder to those of us that are in a position to choose that choice is a privilege unavailable to many, making it all the more important that those who can take a stand, do. The “challenge” aspect of the 2021 theme is a little more open to interpretation, and no doubt means different things to different women. For me it resonates most in the context of challenging stereotypes and societal norms since that is what so much of my work is really about, but challenge could also mean to confront discrimination or oppression, and it could mean to challenge yourself. This IWD I would like to challenge the idea that women’s rights and disability rights are separate issues. Through the work of Professor Kimberlé Crenshaw the world has come to know the term “intersectionality” but how many of us have taken steps to really understand the intersections that exist within the causes we care about, and truly examine our positions and potential biases? If you are a passionate feminist then it is your business to care about ableism, champion the causes of disabled women and amplify their voices. Disabled women are part of the norm, around 10% to be specific, that’s nearly 17 million women in the UK alone. We are not merely a side issue to be sympathetic to, our rights and freedoms are entwined with yours. Within any marginalized group you are likely to still find a hierarchy that reflects the biases of the world around it. Despite best intentions we know that sexism still exists in the disabled community and that ableism absolutely exists within the feminist movement. And we’re not just talking about a few bad apples either. Outdated and harmful views about disability are deeply ingrained and systemic so to address them we must be informed and wise to the issues. To give one example of the history here, I recently watched an excellent TEDx talk by Una Fonte, who has albinism and is legally blind. She explained the importance of intersectional feminism and referenced the support for Eugenics among some important feminist figures in order to encourage wider support for abortion rights and birth control. Yes, that’s right mid century feminists argued that disabled people could be eradicated if women were given the ability to control their pregnancies, actually harnessing ableism as a tool to further an agenda that did not factor in the views or rights of disabled women. An ugly legacy and something that is rarely spoken about. In fact, aspects of that misguided thinking still exist today. Beyond the skeletons in the closet there is often an erasure of disabled women in the conversation about gendered discrimination as well. When we talk about the pay gap for example we rarely mention that disabled women earn less than both disabled men and abled women. Did you know that in the UK “on average, non disabled male employees earn £2. 15 more , compared to disabled male employees that are paid £11. 80 per hour, and non disabled female employees earn £1. 53 more  per hour compared to disabled female employees that earn £10. 20 per hour?”. That’s a huge 36% difference. And according to the UN disabled men are twice as likely to be in work than disabled women. In an essential report sponsored by ‘The Female Lead,’ Terri Apter follows up her 1994 work “women don’t have wives” to try and dissect why women are still absent from the top jobs, despite the changes in social attitudes and narratives over the past 25 years. I quote:

https://www.forbes.com/sites/drnancydoyle/2021/03/07/international-womens-day-challenge-choose-to-be-disability-inclusive/?sh=8733dca70c6c

Bill aims to study state’s disability services, prevent people from “falling through the cracks”

The costs that come with Grace Peterson’s cerebral palsy are not small. “A custom manual wheelchair is $14,000. $5,000 to put a ramp on our deck, and $25,000 just to adapt a vehicle,” Grace’s mom, Sammantha Peterson, said. Sammantha says because her daughter doesn’t have an intellectual disability, she’s not eligible for certain developmental disability services that would make managing her cerebral palsy easier. “Some of those services are access to Medicaid, respite, home renovations and vehicle modifications,” Sammantha said. But a bill aims to address that, by studying the state’s current services and figuring out what’s needed. “What we hope to come out of this study is that ability to not let anybody fall through the cracks,” Roxane Romanick said. Romanick has experience advocating for families with Down syndrome but says kids like Grace should be covered in the current services, too. “In my work, have seen people who end up falling through the cracks with the current programs that exist. We really are not meeting all the people we should be,” Romanick said. Grace, who’s 10 years old, and her mom testified in front of the Senate Human Services committee to show their support for Senate Bill 2256. “I think it will help me so that I can get my van, my car for me. And respite and stuff,” Grace said. The bill provides $150,000 in funding to the Department of Human Services to conduct a study, which, a DHS representative says it supports. “We believe that it is an important issue to study developmental disabilities as a whole, from the state’s perspective as far as where there are gaps and what we can do to improve services,” DHS Developmental Disabilities Division Director Tina Bay said. Bismarck Sen. Dick Dever sponsored the bill after he says similar legislation in 2017 didn’t fully address the problem. “There has been concern that some people are eliminated from services that it seems to me should be available to them,” Dever said. The committee did not yet vote on the bill, but Grace says she’d like to see it pass. “I’m just here for me and all my friends, and please vote do pass. ”According to the CDC, about 7 percent of children nationwide have been diagnosed with a developmental disability.

https://www.kxnet.com/news/local-news/bill-aims-to-study-states-disability-services-prevent-people-from-falling-through-the-cracks/

5 Questions That Help Define The Outlines Of Disability Advocacy

What is the shape of disability activism? There is a lot of natural variation in the large and diverse disabled population, and many different opinions among the smaller core of committed disability activists. But there are some beliefs, positions, and mindsets that shape the community of individuals and organizations loosely referred to as “Disability Activism. ” They aren’t exactly boundaries or litmus tests. They are more like magnets that draw disability advocates in certain directions. What are these key positions? How do we identify them? Here are five questions that go a long way towards defining disability activism as more than a set of moods and activities, but rather a movement with both diversity and a distinct direction. 1. Is disability mainly a medical or a social experience? The disability experience has two main aspects. First, there are people’s own mental and physical conditions, practical impairments, pain, discomfort, illness, and lack or loss of functioning. These form the conventional components of disability itself. It is essentially a person experience, and medically based. Then there are the barriers people encounter that are related to their disabilities, but come from the outside. This can include lack of physical, sensory, or mental access to essential spaces, processes, goods, and services – and discrimination by individuals, laws, institutions, and practices. These are the social forces that make disability so much more than a purely personal and medical experience. These two aspects of disability have for some time been referred to as the “Medical” and “Social” models of disability. Most disabled people experience elements of both. But whichever comes to be your dominant concern is both affected by and then further shapes how much you look to yourself for a better life and how much you look to outside people and social forces. Modern disability activism is mostly based in the Social Model of disability. It is more concerned with collective action to make society more accepting, equitable, and accessible, and focused much less on funding for medical research or development of new treatments and therapies. This less a matter of right or wrong, than it is a difference in focus. But it’s enough of a difference to give disability activism a noticeably different tone, flavor, and direction than, say, fundraising for medical research, or treatment of disabling conditions. Broadly speaking, disability activism seeks to fix society’s ableism, not fix disabled people’s disabilities. That gives disability activism it’s most essential and distinct shape and dimension. 2. Should “disability” itself be defined narrowly or broadly? 30 years ago or more, the “disability community” was mostly understood to be people in wheelchairs, plus blind people, Deaf people, and people with intellectual and developmental disabilities. Now more than before, we include mental illness, learning disabilities, chronic illnesses, and chronic pain as disabilities. In 1990, the ADA’s definition of qualifying disability helped solidify this trend which continues to this day. Most people with any experience at all in disability culture acknowledge that this more expansive definition of “disability” is right and proper. But the truth of it still isn’t fully established, even within the disability advocacy community itself. There is still an implied hierarchy in which people with physical disabilities dominate, and those with other disabilities, especially those with mental illness or intellectual disabilities, are still too often treated as secondary partners. And outside disability culture, people still tend to associate the word “disabled” first with wheelchairs, crutches, and prosthetics, and maybe hearing aids and guide dogs – with other disability groups treated as adjunct or distinct groups with different sets of concerns and standards of treatment.

https://www.forbes.com/sites/andrewpulrang/2021/02/28/5-questions-that-help-define-the-outlines-of-disability-advocacy/?sh=30743e175e97

2020 marked 7-year high unemployment rate for people with disabilities

The agencys data show a clear decline in employment for persons with a disability, though HR industry observers have noted that the pandemic may also have created some positive changes for this category of job seekers. Accessibility to job opportunities has long been a challenge for individuals with disabilities. However, due to public health measures taken to limit the spread of COVID 19, many employers adopted hiring processes that are mostly or entirely virtual. Moreover, that adoption is expected to continue well into 2021. Combined with other measures to reduce bias in the hiring process, this change could vastly improve accessibility for individuals with disabilities, according to sources who spoke to HR Dive last year. A similar change has occurred with respect to telework and other flexible work arrangements. The impact of remote work in 2020 could change, for instance, the compliance conversation about whether such arrangements could be considered reasonable accommodations under the Americans with Disabilities Act. Still, there are steps that employers can take to support workers with disabilities during the pandemic. A 2020 report by the Association of People Supporting Employment First noted that many persons with disabilities work in essential categories of jobs, such as those in grocery stores and healthcare facilities. Many of these essential workers regularly rely on supports from job coaches and employment specialists to navigate changes in business practices and job responsibilities, ASPE said. These direct support professionals are crucial in ensuring the safety and health of people with disabilities. In an opinion piece to HR Dive, consultant Toby Mildon wrote that employers may want to reach out to their employees and listen to their experiences during the pandemic. Among other things, employers can also ensure that technologies adopted in the past year, such as online meeting platforms like Zoom, have accessibility features enabled, Mildon wrote. – Ryan Golden @RyanTGolden Get the free daily newsletter read by industry experts Topics covered: HR management, compensation & benefits, development, HR tech, recruiting and much more. The recruiting process has seen massive disruption as problems caused by the pandemic necessitated creative solutions. The workplace bias watchdog said it is eyeing everything from vaccine mandates to artificial intelligence.

https://www.hrdive.com/news/2020-marked-7-year-high-unemployment-rate-for-people-with-disabilities/595959/

A Disability Day of Mourning: Remembering the Murdered and the Vulnerable

In 2012, Elizabeth Hodgins shot and killed her 22 year old son, George, in his childhood bedroom in Sunnyvale, Calif. She then turned the gun on herself. Although she murdered her own child, local news described Elizabeth Hodgins as a “devoted and loving mother. ” George, on the other hand, was called “low functioning and high maintenance. ” George was autistic, and article after article reinforced a single message: His disability made George somehow responsible for his own death. Another mother who knew the Hodgins family told the San Jose Mercury News: “We don’t know what caused this mother to do this. But every mother I know who has a child with special needs has a moment just like that. ” Zoe Gross remembers reading about the murder, and the whiplash she felt: “The pivot was really quick from ‘there’s been this crime and this tragedy’ to ‘caregivers of autistic adults face terrible burdens, and the mother was driven to this. ’” Gross is the director of advocacy at the Autistic Self Advocacy Network, and is on the spectrum herself. “This isn’t how society reacts when there’s a murder suicide and there isn’t a disabled person involved,” she told me. Gross noticed a pattern in how the media covered George’s murder and other similar murders. “It’s like they’re working off the same script. … We’re pretty clear that no matter what is going on in someone’s life, murder is still unacceptable. But that goes out the window when you introduce disability. ”In response, Gross founded the Disability Day of Mourning. On March 1 every year, disability communities gather to mourn disabled people murdered by their caregivers. The first vigil was held in 2012, outside Sunnyvale City Hall. “It was a small group. We had some local [advocates] there. And we had some people from the community who knew George,” Gross recalled. Since then, the Disability Day of Mourning has become an international movement, with 32 vigils planned across the world. Because of the pandemic, all vigils this year will be virtual, except for the one in Sydney, Australia, where Covid 19 is less widespread. “We usually have between 30 and 40 sites every year. Most of them in the US, but we’ve also had sites in the UK, Australia, and China,” Gross said. At every vigil, advocates read from a list of names. The first year, the list was short. “It wasn’t because there hadn’t been a lot of people killed. … It was because it was just a list that I had put together on my own,” Gross said. The original enumeration included names from multiple years, and was based on a similar catalog called the Record of the Dead, which had been published on the now defunct blog Feminists with Disabilities. Now there are hundreds of names, and it is no longer practical to read it in its entirety. “Most will now read just the names that have been added the year since we had the previous vigil,” Gross explained. It isn’t clear how many disability motivated filicides happen each year. While the FBI tracks the number of children killed by their parents in the United States, information about motive is not usually collected. Instead, the Autistic Self Advocacy Network tracks news stories about caregivers who kill. The stories are collected on a website and maintained by a volunteer. “It’s done with Google news search,” Gross explained. The person “has a pretty specific Boolean search string of words that they use. … It’s the best methodology available to us. ”

https://www.thenation.com/article/society/disability-day-mourning/

It’s Time To Stop Even Casually Misusing Disability Words

Words Have PowerContent warning: This article mentions and discusses offensive words related to people with disabilities. It’s not “oversensitive,” or too “new” of a concern for organizations and businesses to take a hard look at reforming ableist language. Ableism itself is not a new phenomenon, even if “ableism” is a new word to some of us. And avoiding offensive language throughout organizations isn’t just about preventing bad publicity. Curbing use of stigmatizing and problematic language makes workplaces safer for diversity, more productive for employees, and friendlier to customers and clients. This should certainly include identifying and ending use of universally offensive disability slurs, like the word “retarded. ” Few would seriously argue that it is okay for any organization to tolerate either intentionally insulting or casual use of this word, now widely referred to as “The R Word. ” But the effort to reduce ableist language should also include rethinking more commonly used and traditionally accepted disability words and expressions that while not always offensive, tend to reinforce ableist thinking. Start with abusive, corrosive slurs to avoid in all cases, effective yesterday. These words are peppered throughout some people’s everyday conversation, and have many different shades of contextual meaning. However, they are all terms that have historically been used to label people with intellectual and developmental disabilities. And while these and similar words were at one time considered technical or “scientific” labels, they have always also carried a heavy social stigma and power to inflict real harm. Most people with these disabilities have intensely painful experiences being called “retarded,” “moron,” or “idiot” in clearly insulting ways. The fact that a people still use such terms without intending to hurt disabled people doesn’t matter. They are harmful in all cases. People with intellectual and developmental disabilities, particularly those actively involved in self advocacy, are strikingly clear that they do not accept use of these terms, especially “retarded,” under any circumstances. That should be reason enough for any of us to banish these words from our vocabularies. Other disabilities are widely stigmatized too, including physical and mobility impairments, and mental illness. When we use “cripple,” “invalid,” “crazy,” “insane,” or “stupid” to refer to a person, either face to face or indirectly, there is really no way to interpret it as neutral or socially acceptable, particularly in anything like a public or professional environment. So we should stop using them to refer to any person, no matter what we think of them. True, there are exceptions where people with certain disabilities use derogatory terms among themselves – like a disabled person referring to themselves with irony or pride as a “cripple” or “crip,” and people with mental illness calling themselves “mad. ” But even when we “reclaim” such terms for ourselves, we do so with a great deal of care and discretion. And this is not a privilege open to people outside our disability communities. As a general rule, these are words that should never be applied to a person, certainly not in public and professional settings. Organizations can feel confident adopting a “zero tolerance” policy on these terms, with no need for elaborate nuance or justifications. Next, rethink how we use more casual, everyday disability words. But what about disability words that are used in more ordinary conversation when you’re not even talking about a person?Until fairly recently, even disability advocates typically agreed to an informal deal. The general public would stop using a small handful of the most harmful disability slurs, while more causal disability adjectives and metaphors would be regarded as acceptable because of their long use and relative lack of personal offense.

https://www.forbes.com/sites/andrewpulrang/2021/02/20/its-time-to-stop-even-casually-misusing-disability-words/?sh=6636e7b57d4e

When Does COVID-19 Become A Disability? 'Long-Haulers' Push For Answers And Benefits

Gabrielle Emanuel From Jodee Pineau Chaisson sits in her office in Springfield, Mass. , on Jan. 12. Pineau Chaisson, a social worker, contracted the coronavirus last May and continues to have symptoms even months after testing negative for the virus. Meredith Nierman/GBH News hide caption Jodee Pineau Chaisson sits in her office in Springfield, Mass. , on Jan. 12. Pineau Chaisson, a social worker, contracted the coronavirus last May and continues to have symptoms even months after testing negative for the virus. When COVID 19 first arrived in the U. S. , Jodee Pineau Chaisson was working as the director of social services for a nursing home in western Massachusetts. By the middle of April, residents at the Center for Extended Care in Amherst were getting sick. In early May, Pineau Chaisson was tapped for a particular duty: I was asked to go onto the COVID 19 units to do FaceTime calls so they could say goodbye to their family members, she recalls. I was very scared. She was worried about contracting the virus but also felt like she owed it to her residents. So, at 55 years old and with no preexisting conditions, Pineau Chaisson put on an N95 mask and a white jumpsuit and she entered the units to help. Three days later, she had COVID 19. She says shes certain she was exposed at the nursing home since, at the time, she wasnt seeing anyone outside of work or shopping in stores, and shed even moved out of her house and into an apartment to avoid bringing the virus home to her wife. Thinking back, Pineau Chaisson wonders if she was sweating too much, which made it harder for her mask to work well. Or, perhaps, she got too close while trying to facilitate the FaceTime calls. It has now been almost 10 months since Pineau Chaisson got sick, yet she is still dealing with a series of devastating ailments. She says she has memory problems, body pain, heart palpitations, depression and chronic fatigue. Sometimes it can even be hard to walk up the stairs to my bedroom, she says. Pineau Chaissons wife has become her primary caregiver. She said her wife has always been supportive and encouraging, even when she needed help getting in and out of the shower. Shes a nurse, so I lucked out, Pineau Chaisson says. Pineau Chaisson is a so called long hauler. These are people who survive COVID 19 but have symptoms sometimes debilitating symptoms many months later. As scientists scramble to explain what is going on and figure out how to help, disability advocates are also scrambling: They are trying to figure out whether long haulers will qualify for disability benefits. Disability advocates and lawmakers are calling on the Social Security Administration to study the issue, update their policies and offer guidance for applicants. If we end up with a million people with ongoing symptoms that are debilitating, that is a tremendous burden for each of those individuals, but also for our health care system and our society, says Dr. Steven Martin, a physician and professor of family medicine and community health at UMass Medical School. We know whats coming. So, we have to make sure that were on top of this, says U. S. Rep John Larson, a Democrat from Connecticut, who joined with another member of Congress to write a letter asking the SSA to work with scientists to understand what support long haulers might need. Applying for benefitsAfter contracting COVID 19, Pineau Chaisson was hospitalized twice and took 12 weeks off work under the Family and Medical Leave Act. After that, she says, she was still dealing with complete exhaustion and extreme memory loss. She wasnt well enough to return to work and, she says, the nursing home fired her.

https://www.npr.org/sections/health-shots/2021/02/22/966291447/when-does-covid-19-become-a-disability-long-haulers-push-for-answers-and-benefit

Colorado lawmakers consider adding symbol to state IDs to indicate disability

Colorados newest attempt at police reform is so subtle, youd have to know what youre looking for to see it. For the second time in three years, lawmakers will consider adding a symbol to state issued IDs that indicate the person has a disability. The bill, HB21 1014, would also allow for a computer notation on a persons license plate record, so that if law enforcement were to run the plate, they would know that the driver or passenger has a disability. Not a physical disability. Ultimately, starting the conversation with our law enforcement that approaching somebody with an invisible disability has to be done from a different perspective, said State Rep. Dafna Michaelson Jenet, D Commerce City. Invisible disabilities can include autism, deafness, ADHD, something that could impair an interaction with law enforcement. This is a way to very clearly, very easily, very quickly communicate, there is something different about the way I operate, so you have to pause and lets figure out how we work together, said Michaelson Jenet. RELATED: Denver City Council approves additional COVID 19 relief, housing : This will result in a culture change: Independent panel to investigate sexual harassment claims in Colorado Judicial branchLawmakers in Alaska passed this type of bill in 2017. It creates a symbol, the letter I, to be used on state issued IDs to indicate someone has an invisible disability. If you are going to stop someone on the street and ask for their identification, if you have that symbol that you have voluntarily opted in, it is a starting point for a conversation about what is different about me, said Michaelson Jenet. She first attempted this bill in 2019, but it didnt make it out of the first committee. This came from a student from Littleton High School, Rebecca Zickerman, when she was in high school, as a student with Cerebral Palsy. She was afraid that if she got pulled over, she might have jerky behaviors that could cause an officer to interact with her inappropriately, said Michaelson Jenet. That version of the bill required that a person provide a form signed from a physician or psychiatrist or other medical professional to qualify for the disability symbol. This year, that is not included in the bill. We worked very closely with the disability community, and the number one reason that were not requiring medical personnel to sign off is because medical personnel dont always identity the invisible disability, said Michaelson Jenet. Alaskas law also requires training for law enforcement, as well as an addition to the states driver handbook to include driver’s obligations when they are stopped by an officer. Michaelson Jenets bill does neither, but a companion bill handles the training aspect. Its purposeful that theyre separate, but they also are driving down the highway in parallel lanes in trying to get to the same place, said State Rep. Meg Froelich, D Englewood. Froelich is the sponsor of HB21 1122, which creates a 10 person commission to recommend new training guidelines to be considered by the peace officer standards and training board . The recommendations for new training for law enforcement and first responders would be due by July 2022. The hope is, with training they go through a, sort of, checklist; is this person not complying with what Ive asked them to do because of these reasons that are perfectly legitimate and not about defiance, said Froelich. The idea of our bill is not to just simply say to the police academies, you need to do a better job on training people for interactions with folks with disabilities, it is to bring the disability community to the table. The commission would include two people with disabilities and two parents of a child with a disability.

https://www.9news.com/article/news/local/next/colorado-lawmakers-symbol-state-ids-disability-license/73-63536538-7c8c-4b58-8c47-0d8aab82c415

Despite risk of COVID-19, some fear people with disabilities are ignored in coronavirus response

CORRECTION: Dessa Cosma is a wheelchair user and a little person. An earlier version of this story was incorrect.  LANSING  Laura Hall has done what she can to limit her exposure to the coronavirus. She rarely goes out, gets groceries delivered to her Okemos home, winnowed her close contacts to a small circle.  But Hall, who has spastic cerebral palsy, cant go it alone. Her husband and roommate help her manage her disorder, helping her climb in and out of her wheelchair, shower and reach things in the kitchen. She doesnt want to get sick with COVID 19. A bout with the flu last year put her in the hospital for more than a week.  I couldnt imagine what COVID would do, she said. If Hall were to get sick, it wouldnt be reflected in public coronavirus reports published by the state and federal government, which report COVID 19 cases among other groups on public databases. Despite her risk, she is not among the highest prioritized for vaccines. People with intellectual and developmental disabilities have been neglected throughout the coronavirus pandemic despite their risk of catching and developing serious cases of COVID 19, disability rights groups say.  The state of Michigan has no way to actually tell us how much the disability community has been impacted by COVID because they didnt collect [enough] data on it, said Theresa Squires Metzmaker, Michigan Disability Rights Coalition CEO.  If they dont have any data, they dont have anything to look at and say this group needs to be prioritized. Information can lead to action, said activist Dessa Cosma, executive director of Detroit Disability Power. She said Michigan should undertake robust tracking of COVID 19 cases among the disability community to understand how the coronavirus affects the community and how to keep people safe. The disparities are beyond what the data shows, she said. If were not tracking it in Michigan, we cannot identify how it affects them. The Michigan Department of Health and Human Services started collecting information on COVID 19 patients disability status in August, roughly five months after the states first case. So far, 3,950 case records in the Michigan Disease Surveillance System show the patient had a disability, department spokesperson Lynn Sutfin said in an email. Metzmaker said she had grave concerns about the accuracy of the states data about coronavirus among people with disabilities, which appears to indicate COVID 19 cases are low in the disability community despite research that shows otherwise. She emphasized the need for robust information about COVID 19 deaths as well as cases among people with disabilities. The state health department also is working with Michigan State University to review COVID 19 deaths, which will track disability status among the sample of 200 representative cases under review, Sutfin said. The departments health systems analyst is using Medicaid data to identify Medicaid enrollees with disabilities who died of COVID 19, and the University of Michigan is collecting disability status information as part of their Michigan Recovery Surveillance Study, she said.  Some research shows people with certain disorders and conditions, like Down syndrome, which occurs in one out of every 700 babies, are at higher risk of contracting COVID 19 and developing a serious or fatal case of the disease.  Researchers who evaluated death rates of New York COVID 19 patients found those with developmental disorders, such as disorders that affect a persons learning, speech or language, had the highest odds of dying from the disease. Those with intellectual disabilities and conditions such as Down syndrome were at third highest risk among patients under 70. The findings were published in a November white paper by researchers from Johns Hopkins University School of Medicine, the West Health Institute and FAIR Health, a nonprofit that pushes for health care cost transparency.  

https://www.lansingstatejournal.com/story/news/2021/02/22/michigan-disability-rights-groups-data-higher-vaccine-priority/4488463001/

Disability Rights CT files federal complaint over age-based vaccine rollout

CT Mirror Connecticuts Nonprofit Journalism. In the first formal challenge to Gov. Ned Lamont’s age based vaccine distribution plan, Disability Rights Connecticut has filed a complaint with the U. S. Office for Civil Rights against the state and the governor “for discriminating against persons with disabilities” by not prioritizing them over the general population. The complaint, which was filed Wednesday, calls on the agency, which is a part of the U. S. Department of Health and Human Services, to “immediately investigate and issue findings on an expedited basis” that Connecticut’s age based policy for vaccinating state residents unveiled this week “constitutes disability discrimination” that violates federal law. [Breaking with national recommendations, Lamont says Connecticut’s vaccine rollout will now be prioritized by age]The advocacy group’s complaint also asks the federal agency to direct Connecticut to “immediately revise’” its vaccine policy to include prioritization for individuals with medical conditions, regardless of age, and to advise the state that it must have a process for people with disabilities to obtain a modification for its vaccine policy. The administration declined to comment on the complaint. The six page complaint alleges that the rollout violates the Americans with Disabilities Act because, among other reasons, it imposes eligibility criteria for the vaccine that “discriminates against and unfairly burdens individuals with disabilities. ” Ultimately, it accuses the state of “perpetuating discrimination against people with disabilities. ”The Connecticut Mirror is a nonprofit newsroom. 88% of our revenue comes from readers like you. If you value our reporting please consider making a donation. Youll enjoy reading CT Mirror even more knowing you publish it. Get CT Mirror briefings with enterprise reporting, investigations and more in your inbox daily. Lamont said Monday he is shifting the state’s COVID 19 vaccine distribution program to one strictly based on age for everyone other than school employees and child care workers, leaving many younger people with chronic medical conditions feeling left behind. Under the previous plan, those age 16 and over with certain chronic medical conditions were next in line to get the vaccine. The complaint notes that the new policy does not allow for exceptions for qualified individuals with disabilities. [People with disabilities were next in line for COVID vaccine. Then the plan changed. ]“Connecticut has adopted this policy even though it is well established that people with disabilities are disproportionately negatively impacted by COVID 19 and more likely to contract the virus and experience severe, often life threatening, and prolonged systems,” the complaint reads. Under the age based rollout, individuals between the ages of 55 and 64 will be eligible for inoculation on March 1. Those between 45 and 64 are eligible on March 22. People age 35 to 44 are eligible for vaccination beginning April 12. And those age 16 to 34 are eligible May 3.

https://ctmirror.org/2021/02/25/disability-rights-ct-files-federal-complaint-over-age-based-vaccine-rollout/

For disability-rights advocate advising Missouri vaccine plan, the work is personal

Over two decades ago, Kasey Kittell opened Sara Hart Weir’s eyes to a population of people who are often overlooked. Kittell was born with Down syndrome, a condition in which a person has an extra chromosome that can cause a range of developmental and intellectual disabilities. The two met when Kittell was entering high school and Weir became her peer mentor to help her with the transition. Their relationship laid the foundation for what would become Weir’s life’s work advocating for people with disabilities. Weir and Kittell became close friends, with Weir later becoming Kittell’s co guardian. Years later, Weir became president and CEO of the National Down Syndrome Society. In January, Weir was brought on by the state of Missouri to help ensure those with disabilities, like Kittell, don’t get left behind during the rollout of the COVID 19 vaccine.  But Kittell won’t get the chance to receive the vaccine or spend time with Weir once the pandemic is finally over. Just weeks after Weir took on her new role, Kittell died of COVID 19 and pneumonia four days after she was admitted to the hospital. She was 36 years old. “Her little lungs and her little heart just kind of started to give up with the pneumonia and COVID,” Weir said. “It’s still very, very, very shocking. ”For Weir, it has made her work even more necessary. “She hadn’t had the vaccine yet, or had access to it in her group home in Kansas, and I think it just puts everything into perspective,” Weir said, “and all the important work that we’re doing in Missouri … to get the vaccine to the people that need it the most. ”Weir joined Missouri’s Department of Health and Senior Services as a special advisor for COVID 19 last month to provide expertise and advocate for the rights and well being of people with disabilities amid the rollout. During her time at the National Down Syndrome Society, Weir played a major role in the passage of the ABLE Act, which created tax free savings accounts for people with disabilities. Her work advocating for people with disabilities was central to her ultimately unsuccessful campaign for Kansas’ 3rd Congressional District last year. Weir was brought on through an initiative between the Centers for Disease Control and Prevention and the Association of State and Territorial Health Officials. She will be aiding Missouri with public health emergency preparedness planning and response programs through 2021, said Lisa Cox, a spokeswoman for the Department of Health and Senior Services. Missouri was one of 12 states selected to participate based on factors like disability prevalence and the COVID 19 burden in the state, Cox said. According to the CDC, adults with disabilities are three times more likely than adults without disabilities to have underlying conditions, which can put them at higher risk for developing severe illnesses if they contract COVID 19. Studies have found that adults with intellectual and developmental disabilities are at least two to three times as likely to die if they contract COVID 19. With no national count of COVID cases in group homes, experts have raised concerns that a lack of data is leaving them with an incomplete picture of the virus’ impact on people with intellectual and developmental disabilities. An Associated Press survey of every state back in June found that at least 5,800 residents in facilities caring for people with intellectual and developmental disabilities had contracted COVID 19 at the time, and more than 680 had died. The actual figure is almost certainly higher, the AP reported. While Missouri’s own 106 page vaccine distribution plan notes that Immediate Care Facilities for people with intellectual disabilities fall under long term care facilitates to be prioritized, it doesn’t delve into specific strategies on how to reach Missourians with disabilities.

https://www.columbiatribune.com/story/news/2021/02/21/disability-rights-advocate-advising-missouri-vaccine-plan-work-personal/4532889001/

What To Look For In A Disability Organization

There’s an important question that may get too little attention in the world of disability services, activism, and culture. If we really care about people with disabilities and disability issues, we should all do better than just tossing pocket change in every fundraising bucket we see, or signing up for every walkathon a coworker’s kid puts in front of us. But how do we choose which disability related causes and organizations to support? Some criteria are the same for any kind of charity or organization seeking voluntary support. Look for sound, transparent finances and accounting practices. Make sure they use funds to further an important mission rather than simply enriching top executives. Support organizations that give regular, readable reports of services provided, advocacy accomplishments, and goals achieved. Look for strong oversight by a genuinely representative Board of Directors or similar governing entity. These are basic tips for choosing any charity or cause, for donations or for volunteering. But what other qualities should we look for specifically in disability organizations? Here are some criteria and questions to ask, and why they are important: Organization Type and ScopeThis is the most traditional and well known type of disability organization. Their goals are mainly to fund medical research into treatments and cures for specific disabling conditions, and in some cases to help provide some of those treatments to people with those conditions. The closest thing to an original is the March of Dimes, started by President Franklin D. Roosevelt in 1938 to find a cure for polio. But the model continues, with some modernizing alterations, in the March of Dimes itself and in other legacy organizations like the Multiple Sclerosis Society, Muscular Dystrophy Association, United Cerebral Palsy Association, and the Alzheimer’s Association. Notably, many of these organizations are better known to the general public for their fundraising events, and less for the work they do. Most disability organizations provide at least some personal and material assistance directly to disabled people and their families. For some, direct service is the main focus. Services can include funding for adaptive equipment, paying for certain high cost medical procedures, or enriching experiences like support groups and summer camps. In local chapters and offices, direct services may also include one on one information, counseling, and advocacy assistance to address disabled people’s everyday needs, concerns, and barriers. Two examples of agencies that provide direct services are The Arc, which encompasses hundreds of local chapters that serve people with intellectual and developmental disabilities, and Centers for Independent Living, a nationwide network of local not for profit organizations which are governed and staffed mainly by disabled people and serve people with a wide variety of disabilities. Direct advocacy for individuals facing disability discrimination and other barriers is a type of direct service. But it is also inseparable from activism, in which disability organizations, more loosely organized groups, and individual advocates fight for permanent changes in practices, policies, and laws to make life better, more accessible, and more just for all disabled people. Some organizations, like the American Association of People with Disabilities and ADAPT focus mainly or exclusively on advocacy, while others like Centers for Independent Living, the National Federation for the Blind, and the Paralyzed Veterans of America combine advocacy and activism with direct practical services. Some people prefer to focus on people with a particular kind of disability. It might a very specific condition, like Down Syndrome, or a somewhat broader category of disability, like intellectual and developmental disabilities, mental illness, or mobility impairment and wheelchair users. Another approach is to support organizations and coalitions that try to serve and advocate for people with the widest variety of disabilities, on issues and barriers common to all or most people with any kind of disability.

https://www.forbes.com/sites/andrewpulrang/2021/02/16/what-to-look-for-in-a-disability-organization/?sh=2eda46d55a84

Improving disability accessibility across Springfield College’s campus

About fifteen years ago, Dr. Daniel Zukergood, a professor of education at Springfield College, sent groups of students in his Multicultural Education course all over the campus with nothing but wheelchairs. Their task: to see where they could go, and where their “disability” prevented them from going. Before there were building codes, laws, and state legislation, it was not easy for people with a disability , or a person who uses a wheelchair to navigate all buildings. With the long history of Springfield College and the age of some of the buildings on campus today, it’s interesting to see how the college has come. Dr. Zukergood speaks about his experience teaching his highly acclaimed Multicultural Education class, and the idea of ableism, or discrimination in favor of able bodied people.  “There was limited access to a lot of different places on campus,” Zukergood says. He went to Weiser Hall with one group of students, and attempted to get to a classroom in the basement with a student in the wheelchair.  “We had four people holding her wheelchair going down those first steps into the basement, and we couldn’t do it… it was a near catastrophe,” he explains. The students also discovered multiple dormitory halls and buildings that couldn’t be accessed in a wheelchair.  A few wrote letters to the president at the time, Richard B. Flynn, informing him of the issues on campus. “I’d love to say that we made a big difference. I’m sure that it helped [with] what we did,” Zukergood continues, “but I don’t think that we were the driving force. ” Two years ago, I was a student in EDUC 237 with Dr. Zukergood. In regards to sexism, classism, racism, ableism, and more, he asked our class to think about ourselves as individuals in relation to these ism’s. I believe many professors and students at Springfield College are what one could consider “active anti oppressors” in regards to many ism’s. Dr. Zukergood sees himself as an active anti oppressor when it comes to issues of gender, class and race. Yet in regards to ableism, Dr. Zukergood selflessly admits that he has been a “passive oppressor”. I think this applies to a lot of people. It’s not intended to make you feel bad, nor is the term “passive oppressor” meant to hurt anyone, but Zukergood makes a point in his class to his students that in many cases, “people aren’t interested in disability until it happens to them or someone in their family. Those who are privileged rarely see or acknowledge their privilege. ” Dr. Zukergood’s class has positively impacted many students to advocate and push for change on campus and in the world. While his activity on disability accessibility wasn’t necessarily an integral role in creating changes on campus, it is a prime example of his ability to bring attention to some of the issues. To get a more personal and in depth experience about accessibility on campus, I talked with Springfield alum and friend, Luie Gomes, who lived on campus for a total of six years in three different dorm buildings. Gomes, born with cerebral palsy, spent the majority of his time navigating the campus via electric wheelchair. Sometimes he would use a standard wheelchair, but as a person who regularly uses different kinds of wheelchairs on campus, Gomes has a unique experience. “I have no complaints,” Gomes expresses. “If there wasn’t a perfect situation, Residence Life did a phenomenal job of accommodating as best they could. ” Gomes praises Springfield College for their help over the years. The school did make some things easier, like providing him with an access key for the elevator in the Senior Suites when it was shut off so that he could still have access to laundry and other facilities. But Gomes does want to remind his peers of the bigger picture.

https://scstudentmedia.com/improving-disability-accessibility-across-campus/

After four years of planning, Duke Disability Cultural Center to open this semester

After nearly four years of anticipation, the Duke Disability Cultural Center will open its doors later this semester if COVID 19 conditions at Duke permit.  The center, which will be located in Room 033 of the Bryan Center, will offer resources open to anyone who may benefit from them, including meeting spaces for disability related organizations, a study room and a disability studies library. The center will also host social events throughout the year. Members of the Duke Disability Alliance began developing plans for the Center in 2017, wrote senior Maddie Fowler, DDA’s former co president and a current executive board member, in an email. The planning process involved gathering input from friends, drawing up extensive proposals and searching for possible locations. When this student centered space officially begins operations, Duke will become one of just nine universities across the country to feature a disability cultural center, Fowler wrote. “The idea for the Cultural Center was born with our former president and Duke alumnus Jay Pande [Trinity ‘20], who presented the idea at a general body meeting in fall 2017,” she wrote “I remember it well because it was one of my very first [general body meetings] with DDA and everyone was so excited about it. We were first able to check out our new temporary space in person last October 2020, but we are hoping to be open on a limited basis starting later this semester, spring 2021,” she continued. After DDA members were able to secure the Bryan Center room, they needed to purchase furniture and make renovations, including finding appropriate options for natural lighting and adaptive infrastructure. Delays due to the COVID 19 pandemic and erratic communication between the DDA and Duke administration prolonged the operation, Fowler wrote, but did not halt the efforts of DDA members.  “It has definitely been a team effort, with input from many DDA members, Duke admin, disability community members, and allies from across Duke,” Fowler wrote. “We have also learned so much and been empowered through our connections and partnerships with other universities’ disability cultural centers and disability activists. ”The centers opening is contingent on Dukes COVID 19 guidelines, DDA President Simran Prakash, who is also photography editor for The Chronicle, wrote in a message.  While providing resources is an important goal of the Disability Cultural Center, the DDA also wanted to make it the hub of a supportive community for anyone at Duke affected by a disability.  In Fowler’s words, the purpose of the Center is to show that disabilities are experienced every day, not on an on and off basis they influence a person’s culture, experiences and overall identity. These ideas are frequently discussed during the DDA’s virtual general body meetings, which occur every other Saturday, Fowler wrote.  She also encouraged anyone who thinks they could benefit from the Center to reach out to DAA to learn more.  “The more disabled and allied voices we have in our organization, the stronger we can be as a community at Duke,” Fowler wrote. E

https://www.dukechronicle.com/article/2021/02/duke-university-four-years-planning-duke-disability-cultural-center-open-resources-library

The Guardian view on disability and Covid: shine a light

Families are worried that people with learning disabilities have not been prioritized. Who can blame them? A review by the Care Quality Commission of the allocation of do not resuscitate orders to some care home residents without consultation, during the first wave of the pandemic, is expected shortly. But already, new concerns have been raised that the same practices may be recurring. Normally, these orders should only be made when people are too frail to benefit. But the charity Mencap says that it has heard recently from people with learning disabilities who are concerned that they have been barred from potentially life saving treatments. There are complaints, too, about the vaccine rollout, with questions raised both about the prioritization criteria and the decisions made regarding specific cases. Six out of 10 people who died from Covid until November last year had a disability, with disabled adults aged 18 34 dying at 30 times the rate of the general population. While the government’s medical advisers decided that the over 65s faced a higher risk of death than many younger disabled people, some campaigners believe that more people with disabilities should be classed as “extremely vulnerable”. Existing categories, they argue, may not take account of all the reasons why learning disabled people could be in danger. For example, they might not be able to describe symptoms clearly if they become ill. Or they could be at additional risk because they live in communal settings in close proximity to others. On Tuesday, the BBC presenter Jo Whiley went public with her frustration that she had received a summons to be vaccinated before her younger sister, Frances, who lives in a care home and has diabetes and learning difficulties. Of course, no system is perfect. A new tool, QCovid, developed by scientists at Oxford University, should improve the current one. It will add information on people’s ethnicity, socio economic status and body mass index to calculate risk more precisely. As a result, 800,000 people will be bumped up the list for vaccination. But whatever impact this has on disabled people, there are wider lessons to be drawn from their high death rate and difficult experiences during the pandemic. The future of social care is widely understood to be a pressing policy question, even if politicians have yet to offer a convincing answer. But adults with disabilities are too often left out of a conversation that is assumed to be all about older people. This assumption is false. In 2018 19, 293,000 people aged 18 64 received council funded social care in England, mostly at home, with 70% of them needing it because of learning difficulties. Currently, these younger adults account for around a third of all those receiving social care, and around half of all local authority social care spending, with the number of learning disabled adults projected to keep rising, in part due to medical advances. The prejudice associated with learning difficulties has lessened over recent decades. Derogatory language that used to be commonplace is less prevalent. Public awareness of conditions including autism has markedly increased. But in important ways, the situation was deteriorating even before the pandemic. Last year, the CQC highlighted poor standards of care in some hospitals. The shortage of specialist nurses is among serious gaps in the NHS workforce. In the community, benefits freezes and cuts to local services such as libraries have made it harder for people with additional needs to participate in social and economic life. As ministers plot Britain’s recovery, they should be pressed to ensure that their plans include people with disabilities, who are too often ignored, and have endured particular hardships under Covid.

https://www.theguardian.com/commentisfree/2021/feb/16/the-guardian-view-on-disability-and-covid-shine-a-light

Disability appeals take months, sometimes years, just for a hearing

People are left waiting for years, sometimes even decades, to receive government benefits they’ve paid into their whole life. Disability claimants who have their cases denied and have to go through the appeals process often have no idea when their case will finally be heard. “I had a family member that was waiting on social security disability for eight years” Columbia resident Jimmie James said. “He received his social security disability and within two weeks he passed away. ”James applied for disability himself after four deployments in Iraq and Afghanistan left him with PTSD and a spinal disease. He was denied at first, just like 64 percent of people who apply, but eventually the South Carolinian won his appeal after ten months. “My whole goal was to get out and still continue to work. So, when that ability was taken away from me, it makes you nervous because now you don’t know what you’re going do,” James said. After an initial claim is denied, people applying for disability can appeal their case to an administrative law judge. “The sickest of the sickest people typically will get approved at initial application but not always,” attorney George Piemonte said. “I have had many people with terminal cancer and other diseases that still ended up having to come to me for help because Social Security denies their claims. ”Piemonte is president of the National Organization of Social Security Claimants’ Representatives. When people are denied disability he helps represent them in front of an ALJ. New data obtained by WBTV shows that the average wait time before getting a hearing in the Charlotte office is 284 days. “And that’s just the time from when they request a hearing, that doesn’t include the time from when they first filed their application,” Piemonte said. “Right now from filing application to getting in front of ALJ, we’re probably in about the two year period. ”But that’s just the average. “We’ve had many clients over the years pass away waiting for their hearing. ” Piemonte said. Records provided by NOSCCR show that as of December there were 2,660 disability cases that had been pending for more than 1,000 days. Piemonte says many of these are likely cases that have never been transferred from paper files to electronic files and because no in person hearings are being scheduled during the pandemic their cases are currently on hold. Piemonte has one client who first filed two decades ago and because her files are paper, has been waiting for a hearing since January 2020. “In 15 years has not come up with a solution to handling paper files, and now those people are really paying the price,” Piemonte said. WBTV reached out to the Social Security Administration to ask what they’re doing about these wait times and how they plan on handling paper case files. A spokesperson wrote us back saying the agency has “made significant progress by reducing the average wait times by nearly 11 months since September 2017. ”

https://www.wbtv.com/2021/02/11/disability-appeals-take-months-sometimes-years-just-hearing/

Unfavorable Attitudes To Disabled People Rife Amongst Medics, Says New Study

Cropped shot of an unrecognizable male doctor standing with his arms folded inside of a hospital . . . [+] during the dayA new study published in this month’s issue of the health policy research journal Health Affairs has revealed some unsettling insights on the attitudes of U. S. physicians towards people with disabilities. According to the research led by Lisa I. Iezzoni, MD, a specialist in the clinical experiences of individuals with disabilities based at Massachusetts General Hospital , more than 80% of the 714 U. S. doctors surveyed affirmed that people with disabilities enjoy an inferior quality of life to that of non disabled people. Potentially more worryingly, a mere 40. 7% of participating physicians from a cross section of specialisms around the country, reported a high degree of confidence in providing a similar quality of care to patients with disabilities to the rest of their patient cohort. Furthermore, only 56. 5% of physicians strongly agreed that they welcomed patients with disabilities into their practices. This is despite the receipt of equitable healthcare being a mandated requirement within the Americans with Disabilities Act . Commenting on the research, Iezzoni, who herself has lived with the chronic neurological condition multiple sclerosis since 1980, said, “That physicians have negative attitudes about patients with disability wasnt surprising. Later adding, “But the magnitude of physicians stigmatizing views was very disturbing. ”Drawing on parallels from across the diversity spectrum, Iezzoni posited, We wouldnt expect most physicians to say that racial or ethnic minorities have a lower quality of life, yet four fifths of physicians made that pronouncement about people with disabilities. ”These findings may be viewed as startling in ordinary times but arrive against a backdrop of the past 12 months when distrust towards doctors within certain sections of the disability community and their advocates has never been higher. Set within a wider context of disabled people feeling abandoned by governments around the world during the early days of the pandemic, media stories were quick to surface of patients with disabilities being deprioritized for ventilator treatment should they become seriously ill with Covid 19. In the U. K. , a scandal broke about doctors placing unlawful Do Not Resuscitate orders on the medical records of individuals with learning disabilities. At the same time, the much maligned Clinical Frailty Scale, which downgraded eligibility for life saving treatment based on parameters such as receiving care at home, was hastily abandoned by the National Health Service. Back in the United States, at the height of the Covid surge in March, the Office for Civil Rights at the U. S. Department of Health and Human Services moved to remind health care providers that subjective perceptions around “quality of life” should not be used to deny critical care to people with disabilities. The human cost during those harrowing days when the world changed forever was, once again, underscored by a recent Al Jazeera two part investigative documentary entitled, “COVID’s Disabled Victims. ”The report saw family members of disabled people from different countries fighting back the tears as they spoke of their experiences pleading with doctors to offer their stricken relatives intensive care treatment but being informed that their loved one “just wasn’t suitable” for these measures. In the words of a son in the U. K. grieving for his mother who had a long term neurological condition and died after being denied critical care for Covid 19, “We felt it was almost as if they didn’t really want to know. All they needed to know was that she was a disabled woman with Covid 19. That means she was a dead woman. ”While the lens of the pandemic is certainly a timely and irresistible one to look through when evaluating attitudes within the medical profession to individuals with disabilities, it is not necessarily the most instructive one.

https://www.forbes.com/sites/gusalexiou/2021/02/11/unfavorable-attitudes-to-disability-rife-amongst-medics-says-new-study/?sh=25e5a901560a

We need beach access for everyone, and that includes people with a disability

Beach trips are a traditional part of our summers, but for some Kiwis and their family members living with a disability it can be a limiting experience. Around 1 in 4 New Zealanders have a disability. Their disability arises not from their impairments but from having to live in world designed by people who think everyone is the same. It is society, not the individual’s impairment, that is disabling. Thus, it is society that should be enabling. Examples of enabling measures are seen in efforts to provide beach access for those with disabilities with the installation of beach mats for wheelchairs, or the provision of beach wheelchairs. But after an able bodied woman suffered a significant leg injury on a beach mat, there are now concerns that Auckland City Council, and other councils across the country, might review the provision of such such mats. Any such decisions must take the rights of people with disabilities into account. These rights are to be found in international human rights law, and New Zealand’s own law. Read more: Bilingual road signs in Aotearoa New Zealand would tell us where we are as a nation The rights of people with disabilities are protected by international human rights law generally, which recognizes that everyone is born equal and all have to the right to be free from discrimination. More dedicated protection is found in the United Nations Convention on the Rights of Persons with Disabilities 2006, which New Zealand accepted in 2008. The convention prohibits discrimination on the basis of disability, which it describes as the interaction of people with disabilities and attitudinal and environmental barriers. It also requires countries should take action to ensure accessibility to a range of spaces and services for people with disabilities on an equal basis with those of non disabled people. These rights, like most other rights, must be weighed up with other considerations. A key concept here is reasonable accommodation. This means that necessary and appropriate changes should be made that allow people with disabilities to enjoy their rights on an equal basis with others. But such changes should not impose a disproportionate or undue burden. An Optional Protocol to the convention was also adopted in 2006, which means complaints can be made by individuals to the UN. New Zealand accepted this agreement in 2016. The New Zealand International Human Rights Action Plan 2019 2023 also prioritises the country’s leadership role in advocacy for the rights of people with disabilities. At the domestic level, the New Zealand Bill of Rights Act 1990 says everyone has the right to be free from discrimination and the Human Rights Act 1993 prohibits discrimination on the grounds of disability. Domestic law also includes the Health and Disability Commissioner Act 1994, which established both the role of the Health and Disability Commissioner and a Code of Health and Disability Services Consumers’ Rights. One of the purposes of the New Zealand Public Health and Disability Act 2000 is to promote the inclusion, societal participation and independence of people with disabilities. The Disability Act 2008 was passed with the aim of giving effect to New Zealand’s obligations under the UN Convention. The New Zealand Disability Strategy 2016 2026 guides the work of government agencies on disability issues.

https://theconversation.com/we-need-beach-access-for-everyone-and-that-includes-people-with-a-disability-154158

Meet Warren "Wawa" Snipe, the man performing the national anthem in ASL at the Super Bowl

Snipe, who is Deaf, is set to perform the national anthem and America the Beautiful in American Sign Language during the events pregame, the National Association of the Deaf announced last month.  I was very honored and humbled to be selected to perform these songs at the Super Bowl, said Snipe, a creative artist who acts, creates, performs music and more. It was always my dream to perform at the Super Bowl, and I would love to be able to perform the halftime show in ASL too! Snipe added. Eric Church and Jazmine Sullivan will be singing the national anthem during Super Bowl LVs pregame events, with H. E. R. scheduled to sing America the Beautiful. Snipe told CBS News he and the other performers will be rehearsing together to ensure we are aligned and ready for game day. Snipe explained that the ASL performances typically match the tenor, rhythm and tempo of how singers perform the songs. He said has been preparing by practicing a rendition of the songs that closely tracks how this years singers typically perform them. My approach will follow how this years singers handle the songs in their own way, the 50 year old avid football fan said.  There has been an ASL performer at the Super Bowl since 1992 and the NAD has been involved with the NFL in choosing the ASL performer since 2009, according to Howard A. Rosenblum, the NADs chief executive officer & director of legal services.  Snipe said that he believes it is important to have an ASL performer for the iconic songs at the big game for a main reason: Access. Simple as that. The Deaf and Hard of Hearing community needs access to these iconic songs just like everyone else, Snipe explained. To those who are hearing, try watching television with the sound and captions off, and youll experience inaccessibility. Why wouldnt you want to make everything accessible to everyone, including Deaf and Hard of Hearing people?He added that the representation of people in the Deaf and Hard of Hearing community delivering the ASL performance in public venues matters because ASL is the language of our community and it should be one of us doing the performance. To help make live events more accessible to the Deaf and Hard of Hearing community, Rosenblum told CBS News that ideally the ASL performances of the iconic songs would be shown in their entirety during the television broadcasts. In addition, every live event should ensure that any ASL performance or interpretation is visually displayed on large screens within the event so that everyone can see it, as well as accurate captioning provided by professionals available throughout the event for all to see, he explained. Both ASL and captioning are needed as each serves different segments of the Deaf and Hard of Hearing community with some being fluent only in English or ASL, and others being fluent in both. Broadcasters have been criticized in the past for not airing full ASL performances at the Super Bowl. The Deaf community would like to view the ASL performances in its entirety on broadcast television, Rosenblum said. We do look forward to that day. We appreciate the efforts by the NFL to push sports accessibility to new heights. The NAD plans to post the full version of both performances on its YouTube page following the live broadcast.  While the chance to perform at the Super Bowl may be one of the highlights of any artists career, Snipe has been taking the stage for years. He had his first taste of performing in middle school, then majored in theater in college.  Snipe developed Dip Hop in the late 1990s, which he defines as Hip Hop through Deaf eyes, with a mix of audio and images.  

https://www.cbsnews.com/news/super-bowl-american-sign-language-warren-wawa-snipe/?ftag=CNM-00-10aab6a&linkId=110870784

The Harvard Gazette

Harvard University Chan’s School’s David Hemenway uncertain about effects of Uvalde deaths, but believes growing body of research will turn tide in timeGenSci Lab scholars urge researchers to take care crafting definitions of sex as language can make its way into law, public policy Study looks at racial, ethnic groups, and public vs. private insuranceLong term cardiovascular study looks at impact of healthy habits developed in childhood 2022 The President and Fellows of Harvard College Researchers found that many surgeons were more likely to assume women with early stage breast cancer who use wheelchairs would opt for a mastectomy instead of breast conserving surgery, believing the women don’t care about their appearance. Anna Stills/iStockBy Anita Slomski MGH News and Public AffairsDateFebruary 1, 2021February 1, 2021More than 80 percent of U. S. physicians reported that people with significant disabilities have worse quality of life than nondisabled people, an attitude that may contribute to health care disparities among people with disability, according to recent research published in the February issue of Health Affairs. The first of its kind study surveyed 714 practicing physicians from multiple specialties and locations across the country about their attitudes toward patients with disabilities. “That physicians have negative attitudes about patients with disability wasn’t surprising,” said Lisa I. Iezzoni, lead author of the paper and a health care policy researcher at Harvard affiliated Massachusetts General Hospital . “But the magnitude of physicians’ stigmatizing views was very disturbing. ”For more than 20 years, Iezzoni has studied health care experiences and outcomes of people with disability and is herself disabled by multiple sclerosis diagnosed in 1980, her first year in medical school. Only 40. 7 percent of surveyed physicians reported feeling very confident about their ability to provide the same quality of care to patients with disabilities as their other patients received. And just 56. 5 percent strongly agreed that they welcomed patients with disabilities into their practices. The physicians who reported being most welcoming to patients with disability were female and practiced at academic medical centers. The Americans with Disabilities Act of 1990 requires that people with disability receive equitable health care. That most surveyed physicians did not give socially desirable answers about their perceptions of people with disability indicates their certainty in their beliefs, said Iezzoni. “We wouldn’t expect most physicians to say that racial or ethnic minorities have a lower quality of life, yet four fifths of physicians made that pronouncement about people with disabilities. That shows the erroneous assumptions and a lack of understanding of the lives of people with disability on the part of physicians. ”“Our results clearly raise concern about the ability of the health care system to ensure equitable care for people with disability,” added senior author Eric G. Campbell, professor of medicine and director of research for the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus. “Studies of people with disability show that most don’t view their lives as tragic. ” Lisa I. Iezzoni The paper cites examples from Iezzoni’s and others’ research demonstrating that individuals with disabilities often receive inferior care. Many surgeons assume, for example, that women with early stage breast cancer who use wheelchairs want a mastectomy instead of breast conserving surgery, believing that women with disability don’t care about their appearance. And during the surge of the COVID pandemic in March, when resources such as ventilators were scarce, the Office for Civil Rights at the U. S. Department of Health and Human Services felt compelled to issue a warning to health care providers that people with disabilities should not be denied medical care on the basis of disability or perceived quality of life.

https://news.harvard.edu/gazette/story/2021/02/survey-finds-doctors-have-negative-perception-of-patients-with-disability/

Why One TV Writer Went From Hiding Her Disability To Advocating: ‘We Need Disabled People In All Levels’

Katherine Beattie, who has cerebral palsy, advocates for disability inclusion in Hollywood. These days, work looks a lot different for Katherine Beattie.  A producer on CBSs hit procedural drama NCIS: New Orleans, Beattie and the rest of her colleagues had to adjust their storytelling to fit Covid 19 protocols. They now meet remotely to produce each episode of season 7 versus being on set. They are also shooting in fewer locations, with fewer action scenes, and mask wearing is mandatory. The most significant change for Beattie, who has worked on the show since its inception in 2014, is not traveling to New Orleans to shoot.  Adjusting has been an arduous task for almost everyone involved but not necessarily for Beattie, who has spent her entire life adapting to a world not built for her.  Beattie was born with cerebral palsy, a group of movement disorders impacting muscle tone and posture. CP happens as the brain is developing before birth and affects how a persons brain communicates with their muscles. CP affects everyone diagnosed differently. For Beattie, having CP means tight muscles and getting tired quickly. She didnt need mobility aids for much of her upbringing, but she has used a wheelchair full time for almost eight years in her personal life. In her professional life, though, shes only used a wheelchair for four years.  That’s because, for a while, she hid her disability.  Beattie, 34, grew up in Los Angeles County and was tangentially involved in the entertainment industry. Her father, who worked in politics, would often take political candidates to screenings of The Tonight Show, and sometimes Beattie and her twin sister would tag along.  Beattie loved being backstage and meeting the celebrities. At this point, she knew she wanted to work in television in some capacity, but it would take years before she realized she wanted to be a screenwriter. She eventually decided to attend Texas Christian University in Fort Worth, Texas, and majored in their Radio, Television, and Film program. Through a contact at The Tonight Show, Beattie landed an internship at The Ellen DeGeneres Show. After graduation, in 2008, Beattie was offered a job at the show in their human interest department. She assisted the producer with all non celebrity segments. Beattie loved her coworkers and working for the show, she says, but she quickly found herself dissatisfied.  I was driving to work, and I was miserable because I hated working at the show. No fault of anybody who works there, they were all lovely people, and it was a great environment, it just wasnt for me, Beattie said.  I was driving there, and my sister at the time was a high school teacher. And I remember thinking, ‘I should call her and ask if she has a term paper that I can write. ’And then I thought, thats odd. Why would I want to write a high school term paper right now? So that was the moment for me, where I was like Oh, I missed it [writing. ]Beattie had always written in some capacity, even writing friends’ papers in school because she enjoyed it so much. But she never realized it was something she could do as a career until this moment. From that point on, she started finding people who worked in scripted television to learn how she could further her career in that direction. At the time, Beattie says, DeGenerouss wife was working on the ABC show Better Off Ted. Beattie says she began actively working with people she knew to somehow get on the show even going as far as quitting her full time job at Ellen DeGenerous because it seemed likely she was going to land a gig. But then, the show was canceled.  Beattie became a background actor to pay the bills and decided to apply for UCLA Extensions TV writing certificate program. She got in. For 18 months, she worked on her screenwriting craft while also landing gigs in the industry.

https://www.forbes.com/sites/allisonnorlian/2021/01/22/why-one-tv-writer-went-from-hiding-her-disability-to-advocating-we-need-disabled-people-in-all-levels/?sh=2457a8097de7

Fast Retailing Joins Global Initiative to Target Disability Inclusion

Todays Digital Daily Can Influencers Flip Climate Change’s Unglamorous View? Todays Digital Daily The Uniqlo parent has signed on to the Valuable 500, following in the footsteps of over 400 companies worldwideTOKYO Fast Retailing said Thursday that it has joined the Valuable 500, an initiative that encourages business leaders to champion persons with disabilities. In joining the Valuable 500 community, the Uniqlo parent company has adopted a five point commitment that supports the initiative’s goals of diversity and inclusion. While Uniqlo began actively recruiting persons with disabilities in Japan in 2001, Fast Retailing will continue to do this at its stores worldwide, while also providing acceptance training. Both Uniqlo and GU stores in Japan have a target of hiring at least one differently abled person at every store. In addition, Uniqlo was recognized in October 2020 by the New York City Mayor’s Office for People With Disabilities with the Champion of Change Award for its continued commitment to fostering inclusion among its team members. Another facet of the company’s commitment is the creation of products, services and sales spaces that reflect feedback from disabled or elderly customers. Fast Retailing started this initiative at Uniqlo Japan, and is now expanding it globally. “Front open Innerwear, a product line from Uniqlo sold in Japan through its online shop and in select stores, was developed based on feedback from customers who have difficulty putting on or removing pullover clothing,” Fast Retailing said in a release. “Product developers created the line by visiting medical institutions and facilities, and listening to feedback from hospitalized and ambulatory patients, women recovering from breast cancer surgery, persons with disabilities and the elderly. ”In March of last year, Fast Retailing launched a diversity and inclusion website, which it says is an “important corporate activity. ”A message from Fast Retailing’s chairman, president and chief executive officer Tadashi Yanai that is posted to the website calls diversity one of the company’s “most valued principles,” and notes that in order to make clothing that suits everyone in the world, it must be made by a diverse group of people. “We believe a culture of inclusiveness can engender great respect for each other’s values. This empowers us to learn from each other and to continue innovating and transforming our business for customers,” the statement says. Perhaps the most significant points of Fast Retailing’s diversity and inclusion commitment are its support for sports programs for differently abled people and its support for the disabled in local communities. Uniqlo has been an official partner of Special Olympics Nippon since 2002, donating uniforms for athletes and volunteer staff, as well as assisting with competition operations. Uniqlo Taiwan has a similar program, and Uniqlo has been a title sponsor of the Wheelchair Tennis Tour since 2014. Wheelchair tennis athletes Shingo Kunieda and Gordon Reid also serve as global brand ambassadors for Uniqlo, and the brand is the official clothing partner of the Swedish Paralympic teams. Fast Retailing initiatives that support disabled persons in local communities include a program launched by Uniqlo in South Korea in 2019, in which the brand donated approximately 6,000 items of clothing to some 1,200 individuals with cerebral palsy. The clothes had been customized to be easier to put on and remove. In addition, Uniqlo Singapore has supported a school offering vocational training to students with mild intellectual disabilities since 2017. The Valuable 500 was launched at the annual meeting of the World Economic Forum in 2019. Other member companies include Google, Calvin Klein, BBC, L’Oréal, Tommy Hilfiger, Kurt Geiger and Virgin Atlantic. Several Japanese companies have also signed on, including All Nippon Airlines, Dentsu, Fujitsu, Kao Corp. , Sony, Urban Research and others.

https://wwd.com/sustainability/social-impact/fast-retailing-joins-global-initiative-target-disability-inclusion-1234705430/

Disability, “No True Scotsman,” And “Zero Sum Thinking”

The most outrageous conspiracy theories now reach and influence mainstream politics. Gut instinct, and just plain prejudice, are now rapidly replacing evidence to drive the most drastic actions at the very heart of our democracy. It seems like flawed reasoning has become something of a popular trend. One of the things that makes this all so hard to cope with is that untrue and irrational arguments are presented in seemingly rational clothing. We get the appearance of carefully reasoned arguments, but based on inaccurate information, unsupported assertions, and logical fallacies. And we find it not just in Right wing populism, or in the more radical fringes of the Left. Most smaller, more specific communities and subcultures have their own unhealthy relationships with flawed thinking. This includes the disability community, both from outside and within. One bizarre example is the recent social media trend of “debunking” the accomplishments of well known deaf and blind activist Hellen Keller. The core argument seems to be that Keller’s accomplishments were not her own, but instead engineered by others. It’s an idea based on a mix of unmoored skepticism and pure ableism. Since it seems so amazing that Helen Keller did so much, , maybe common sense tells us that she really didn’t after all. What exactly we are supposed to think from there is a bit of a mystery. This sudden impulse to “go after” an almost universally admired figure in disability history is perhaps easy to dismiss, like belief in a “Flat Earth. ” However, recent events suggest that we ignore this kind of thing at our peril, including when it comes from or affects the disability community. Disability thinking and discourse have for a long time been especially plagued by two common but harmful logical fallacies – sometimes known as “No True Scotsman” and “Zero Sum Thinking. ” They each have an understandable appeal, and some slight basis in real life disability experience. But they are inherently flawed, divisive, and corrosive. And they are important not only for disabled people to recognize, but for non disabled observers and allies, too. “No True Scotsman”The ThoughtCo website explains:“The name No True Scotsman comes from an odd example involving Scotsmen:‘Suppose I assert that no Scotsman puts sugar on his porridge. You counter this by pointing out that your friend Angus likes sugar with his porridge. I then say Ah, yes, but no true Scotsman puts sugar on his porridge. ’”First someone states a broad generalization or prejudiced assumption about a group. Next, someone else counters by pointing out people who don’t fit the stereotype. Then, the person defending the stereotype responds by declaring the counter examples are actually not a real part of the group, thereby leaving the stereotype unbreached. It’s similar to another common fallacy – “moving the goalposts. ”So how does this formulation play out in discussions about disability?The most common instance has to do with who is and isn’t considered “truly,” “significantly,” or “severely” disabled, and by extension, who can and can’t authentically represent the disability community. Here the conflict is typically between a disabled advocate and some variety of skeptic or opponent of something the advocate stands for. For example, the disabled advocate insists that equal opportunity, meaningful choices, and civil rights under law should apply to all disabled people, not just people with certain disabilities that are regarded as “milder” or “less severe. ”A skeptic of this idea replies that while they support general disability rights principles, they don’t believe they can be fully applicable to people with certain disabilities that they believe make a person unable to exercise full rights and liberties. The advocate answers by pointing out that they themselves are disabled, and fully capable of exercising basic human rights.

https://www.forbes.com/sites/andrewpulrang/2021/01/17/disability-no-true-scotsman-and-zero-sum-thinking/?sh=160857fc162a

Disability Discrimination In Health Care Under Scrutiny

Federal officials are weighing a rewrite of regulations designed to ensure that people with disabilities do not face discrimination from medical providers amid persistent concerns about unequal access. The U. S. Department of Health and Human Services’ Office for Civil Rights is issuing a request for information on disability discrimination in the health care and child welfare systems. The move comes as the agency said that it “is aware that significant discrimination on the basis of disability against persons with disabilities persists in the nation’s health care system and in its child welfare system. ” In addition to reports of discrimination that have surfaced during the course of HHS OCR’s own activities, officials said that they’ve heard about issues from researchers, advocates and disability organizations. As a result, HHS OCR is reviewing existing relevant regulations and mulling revisions. Now, the agency is looking for feedback on what any updates should address. Specifically, officials said they would like information about disability discrimination in the context of organ transplants, life saving or life sustaining care, suicide prevention and treatment, crisis standards of care, health care value assessment methodologies, child welfare and the availability of auxiliary aids and accessible medical equipment. HHS OCR said it wants input from people with disabilities, their families, providers, disability advocates, hospitals, child welfare agencies and other stakeholders. In addition to information on discrimination, the agency indicated that it would like to hear about the costs and administrative burdens related to various approaches to tackling the issue. “We believe that persons with disabilities should not be discriminated against in vital health and human services including organ transplants, suicide prevention, the provision of life saving care and child welfare,” said Roger Severino, director of HHS OCR. “We believe the American public agrees that persons with disabilities deserve full protection under law and we seek public input on achieving that goal with respect to the most consequential, life altering contexts. ”Once the request for information is published in the Federal Register, the public will have 60 days to submit comments. In one rural county, people with disabilities and others who have been appointed a guardian may soon lose the ability to vote even if a court has expressly preserved their right to do so. After multiple delays, federal officials are plowing ahead with a long awaited Medicaid rule establishing standards for what counts as home and community based services for people with disabilities. With a slew of new actions and additional resources, federal education officials are taking steps to ensure that students with disabilities and their families can access school services.

https://www.disabilityscoop.com/2021/01/19/disability-discrimination-in-health-care-under-scrutiny/29157/

5 Reasons Why Disability Issues Should Be A Higher Priority, Even Now

The phrase “Everything that’s going on” has rarely been so potent. Presidential Election results have been openly challenged in Congress. The Capitol building itself has been physically attacked by a wild but disturbingly directed mob. The Covid 19 pandemic seems to be escalating everywhere. So it may be tempting for elected officials and political strategists to set seemingly specialized concerns aside in 2021 and focus just on a few of the perceived “fundamentals” that are understood to affect “everyone,” rather than narrower “special interests. ”Disability issues in particular risk being sidelined even more than they usually are. Despite some notable recent success in bringing disability policy to the attention of politicians, disability is still widely regarded as a niche concern. Conventional wisdom might suggest that with American democracy literally teetering on the brink, matters like Social Security rules, disability rights laws, and even health care eligibility should be put not just on the back burner, but in the deep freeze for the foreseeable future. This would be a mistake – morally, practically, and politically. Disability issues are far more important and relevant than most people realize. They also offer ground for some tentative returns to a semblance of political bipartisanship, and restoration of faith in society’s ability to do things better. Here are five reasons why disability issues shouldn’t be set aside right now. 1. The disability community is a large constituency, not a tiny special interest. According to the Centers for Disease Control, 61 million adults in the U. S. have some kind of disability – that’s 26% of the adult population, or 1 in 4 adults. 13. 7% of adults have a mobility disability. 10. 8% have cognitive or intellectual disabilities. 5. 9% of adults have hearing impairments. And 4. 6% have vision impairments. These are all minorities in the numerical sense, compared with the whole U. S. population. But they are all substantial minorities. We should also count families and friends of disabled people too, as part of a more broadly defined disability community or constituency. It’s a common mistake to assume that non disabled spouses, siblings, adult children, and work and school buddies always have the same views and priorities as actual disabled people. But they are at least potential and often genuine allies on disability issues. It’s also worth remembering that aging in particular overlaps a lot with disability. Disability becomes much more prevalent as people age, and the percentage of the population that is elderly is huge. 2 in 5 people 65 and over have a disability. The large aging population is part of what makes the disability community much larger than people tend to assume. When we think of “disabled Americans” we need to remember that it’s more than just a few people in wheelchairs. It’s a very large and diverse community of people, who nevertheless share many common experiences of having disabilities and coping with the often difficult place disabled people occupy in society. 2. Disability cuts across our political divides like few other shared experiences. Disability is more prevalent among some groups than others – as already noted by age – but also by race, region, and income. For instance, 16% of Native Americans and 11% of black people of working age in the U. S. have disabilities of some kind. However, every social and demographic subgroup includes significant numbers of disabled people. Anyone can have a distinct or marginalized identity, and be disabled as well. This affects more than just statistics. It means that the disability community itself is incredibly diverse. And the experience of disability adds extra dimensions and cross cutting perspectives to other demographic populations. For example, disability can sometimes give otherwise privileged people a taste of discrimination, sometimes even of oppression, that their non disabled peers may rarely experience firsthand. Meanwhile, less privileged people can be both further stigmatized and hindered by disability, while also at times provided with different paths to survival, community, and liberation through the disability community than are available to their non disabled peers.

https://www.forbes.com/sites/andrewpulrang/2021/01/11/5-reasons-why-disability-issues-should-be-a-higher-priority-even-now/?sh=40ca01e742f8

Proposed Va. bill would protect against workplace discrimination based on disability

A proposed bill in the Virginia House of Delegates would protect people with disabilities from workforce discrimination. Del. Mark Sickles, D Fairfax, introduced House Bill 1848 as an amendment to the Virginia Human Rights Act. The bill would extend discrimination protections to employment, housing and public accommodations for those with disabilities. “HB 1848 amends last year’s Virginia Values Act to make sure Virginians will all abilities can fully participate in our economy if reasonable accommodations can be made in the workplace,” Sickles said in a statement. “Virginia should be a place for all people, regardless of ability, to live and work free from discrimination. ”The bill would require all employers with more than six employees to make reasonable accommodations for people with disabilities unless the employer can show it would cause undue hardship. It also adds disability as a protected class and adds the federal American Disabilities Act into the Virginia code. Sickles serves as chair of the Health, Welfare and Institutions Committee.

https://www.nbc12.com/2021/01/09/proposed-va-bill-would-protect-against-workplace-discrimination-based-disability/