Episode 135 - Is Disability Inherently Negative?

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our world is built with stories [Music] sometimes these stories cause suffering by pulling us apart from ourselves and each other the liturgist podcast helps people love more and suffer less by pulling apart the stories that pull us apart today's story disability is inherently negative [Music] welcome to the liturgist podcast everybody on today's episode dr hillary mcbride is interviewing heather mccain a well-known and respected speaker advocate educator and activist working with a variety of companies cities and non-profits to confront the issues that face disabled people heather it's so good to be sitting across from you especially after all of our emails back and forth and talking even about the language of what we title the episode but for me for our listeners can you tell us a little bit about who you are how you came to do this work what would be helpful for us to know about you just to understand your perspective and the insight that you bring sure so i've had disabilities throughout my entire life but for a large portion i didn't recognize them as such i had mental health issues in high school but didn't realize what disability was or you know kind of how to label it and at the age of 17 my body just kind of broke down and for a good five years i didn't leave my house unless for medical appointments as i tried to sort out what it was that was going on in my body when i started to begin to get answers i started using a power wheelchair and i tried using transportation where i lived which was maple ridge and the buses came once an hour and the bus drivers half the time would lie and say that the ramps weren't operating because they just didn't want to deal with the time that it took to get the ramp down and to load me on which was as you can imagine a big inconvenience to my life is it was particularly frustrating because i had spent so long isolated that i felt like this power chair was my freedom and then to have gatekeepers who stopped me from accessing the world was quite difficult and i wrote letter after letter to translink with no response and i was running a chronic pain support group in maple ridge at the time and decided to look into organizations who could support me and couldn't find any so i appointed some of the chronic pain club members as a board and set up my own and i called it citizens for accessible neighborhoods and i wrote the exact same letter to translink but this time with executive director of and received a response a week later oh ooh that makes me feel angry yes uh it did for sure but it also led to results which we were very excited about um we were able to get that situation dealt with and then a flood of people came to me with other issues and i hadn't really thought out a plan for can but um there's so many other accessibility issues to deal with an education around ableism and disability and that was i founded it in 2005 so this is our 15th year congratulations thank you and we've just grown and grown and we've particularly grown into a kind of intersectional way because we are doing decolonization work uh we're working with the bipoc which is black indigenous people of color um and we're very involved within the queer community including i run a group now called chronically queer which is for queer folk who have chronic health conditions and so really looking at the fact that people with disabilities don't live with that as their only identity they have other identities and how does that affect access to health care and assistance and for example within the autistic community if you know you're black and a female it's harder to get a diagnosis there's a lot more acceptance of self-diagnosis just because of all the barriers especially when you add on these intersecting identities and so there's so much complexity to living with a disability and the other identities and so that's what we're really looking at and it's partly it's a lot of learning but it's also a lot of educating um and really trying to bring the voices of people who don't feel represented out into the community right yeah well it sounds like the barriers that for people who don't live with disability that they might think of were not actually the barriers that you face the barriers were other people absolutely i mean one of the ones that is quite frustrating is being wheelchair bound right so you know one of the most frustrating things is the consistent use of the phrase wheelchair bound because for people who don't have wheelchairs they see it as something that you're strapped to and you're trapped in and it's a bad thing whereas with my wheelchair i had freedom i had mobility i had access to my community and across canada i've traveled all over with my wheelchair and mobility aids and so it's a completely different mindset because for those who really need wheelchairs it is a relief for a lot of people i mean it because of ableism it took me a long time to make the decision to go into a wheelchair because i thought it was quitting i thought it was giving up would we call that like an internalized ableism absolutely yeah and um i had gone from you know doing day-long hikes to walking around my block to not being able to do my stairs to really needing a wheelchair but constantly putting it off because i felt like that was you know this nail in a coffin and then when i got it and i started having access and my joints had relief and i wasn't constantly in pain you know and i could last for a whole day instead of going out and essentially torturing my body and only lasting half an hour and for a lot of people who need wheelchairs like when you actually start to use them there is this like huge sigh of relief wow of being able to you know honor what your body needs unfortunately it's not that easy though because you still get lots of messages from the outside world about how they perceive that right yes yeah all of these against stories and how we internalize them sound like in some ways i mean could we say just as if not more disabling absolutely i mean it's really frustrating to have all these these biases that hold people back the amount of people i know who don't use mobility aids when they go out because they don't want to be seen as disabled or because they don't want to have the comments it's not any easier to go into the world as someone who has an invisible disability either right and so it's kind of a frustration where whatever way you go you're gonna have barriers yeah and uh you know for people who have invisible disability if you sit in the accessible seating in the bus or if you use your decal for the parking you may get people who yell at you i've been physically verbally accosted in transit for sitting in that if i don't have a mobility device they say i'm using my grandparents parking pass because i don't look disabled and these people mean well or think they do but they are trying to protect a service for people who really need it but don't understand that you can't always recognize who does need it right yeah it sounds like it that mentality is based on the idea that disability looks a certain way and if it doesn't look that way then it doesn't exist exactly and the truth is 93 of disabilities are invisible so the majority are invisible i blame the international symbol of accessibility um okay because the sign for the washrooms assigned for the parking it's a figure in a wheelchair yeah and that is what people think of when they think about disability because a lot of people that's the only exposure that they have because there's so much stigma around disability there's people who don't use wheelchairs who don't identify as having a disability because of all that negative perception and so that is the vision of what people see as someone who is disabled and it's really hard to try to explain that it's you know your neighbor who's still walking or you know the guy who's working construction or you know the the female mma fighter who has chronic pain or whatever it is is that there's lots of people that are out there who have chronic health conditions that are disabling and they have disabilities but they don't look a certain way i imagine just linking what what you were saying there with what you'd said earlier about internalized ableism that when we assume this ability looks a certain way we might miss it in ourselves absolutely because we're only looking for specific things yes and uh for our group chronically queer it's open to anybody who has any type of disability and it it really saddens me the amount of conversations i have with people who have mental health issues who say you know i would love to have something like your group but i only have a mental health issue or i have a mental health issue so it doesn't fit into what you're talking about because there's people who have certain disabilities that are made to feel less than and part of that is how it looks um and part of that is is it chronic every day um you know and there's a lot of variability to disability and i don't think that's talked about enough there are people who have chronic pain where they are in pain every moment of every day and then there are people who have like one really bad day a week so there's a hierarchy exactly of which disabilities are more and more uh i mean are you using air quotes like valid or legitimate than others it sounds like absolutely i mean i when i was first trying to figure out what was going on with my body i said that my disability was the uncool table in the cafeteria you know it was i didn't fit in um i have multiple types of arthritis but i have a genetic condition which affects how my collagen is built and that supports all your joints yeah and so i'm hyper mobile which is the opposite essentially of arthritis and so arthritis centers won't accept me because i'm more mobile wow than most people with arthritis the thing is we have more people who don't fit into the neat boxes of healthcare of disability than who do and they're made to feel like they're less than or like they're lower in that hierarchy because they don't fit this again certain image and unfortunately one of the most ableist parts of society is the health care system can you say more about that absolutely just talking to the amount of people who have trauma from going through the medical system is huge take for instance anybody who's fat like the amount of people who are trying to find health care while being fat when the only thing medical professionals want to talk about is their weight i talked to one person who was a bouncer and he said that uh one night on shift he didn't duck in time and his nose was broken and he went to the er and the first thing the doctor said to him is you need to lose weight not even addressing his concern you know and the fact that that has nothing to do with a broken nose yeah but it's it's the first thing that people go to also just there's a lot of medical facilities that are not accessible right so trying to go into a medical building that has no accessible parking and doesn't have accessible washrooms is very frustrating particularly for people who are trans trying to find a healthcare provider who you don't have to educate about your identity is very difficult i talk to so many people who go to psychologists or counselors and they say we're paying these people and we spend half of our appointment educating them about ourselves and so trying to find a really good consistent medical care is extremely hard especially when you don't fit into that neat box right the medical system is really built for acute injuries and that means that you can recover that you can go through rehab and you will get better but when people have complex chronic health conditions it's a lot harder to get that care because doctors often will feel like a failure because they can't fix you and this really goes to um you know the social model versus the medical model of disability and the medical model is that people with disabilities are people who need to be fixed that the only thing that can fix them is the medical system uh and that they're the problem whereas the social model is that no it's the ableism and the inaccessibility of the world and that we all have a part in making that access available right and that the person with a disability is not the problem at all yeah i can see your passion as you say it seems like such an important shift to make away from the pathologization of the person into an acknowledgement of the problems of the system absolutely so yeah if there's a person in a wheelchair who's sitting in front of a set of stairs you know the person with a wheelchair is not the problem right the stairs are right [Music] unfortunately one of the biggest problems is aesthetics winning out over accessibility okay and so having small bricks that look nice is more important than having something that someone who is on wheels can comfortably pass over and i'm sure having pushed a stroller or two you've experienced how different surfaces make it easier or harder to go over and that is universal that is people with bikes people with roller blades people with strollers people with walkers and that's the thing about accessibility it often is helpful to many more people than the people it was originally designed for accessible buttons on doors right there a good example i've actually talked quite a few businesses into getting them not for people with disabilities but for all their deliveries yeah that's right this seems like the perfect point to talk about power and leadership and people who have positions of authority that in in the reading that i've done about ableism and what i've seen in terms of the impact of how how people how decisions are made differently when people with different abilities are in leadership when there's somebody at the table who can advocate for the population with limited mobility or disability that factors in then their their presence as a leader their presence at the table shapes the lives and the experiences of so many people absolutely and disability is something that unless you experience it yourself it is very hard to understand however you know even just being around someone with a disability i've had friends who've said that i've ruined restaurants for them because they can't go into a restaurant now without looking around i mean like well that's not accessible or there's no accessible washrooms or once your eyes are open to it it's something that you can't ignore again it's just trying to get people to be aware of what those issues are and prioritizing it and that's the hard thing is getting people to understand how many people are still being isolated because of this and it's something that there's so many different issues within disability that needs to be worked on that it's quite difficult to try and get people to understand how important this is and how many people are being held back and there's a lot of people who are suffering in silence because they don't see that the community is listening and so they have very limited energy and that's something that's very difficult within the disability community is it's harder to gather right of course you know first of all can they get there by transportation can they gather like is it cold is it too hot can people stay out for very long people's pain levels you know there's so many different factors as to why people with disabilities can't get out and kind of gather as a group so we're not able to get as much attention i mean an interesting thing is voting rights people with disabilities technically have had however it wasn't until 1993 that there was legislation to make voting accessible wow so while we were able to vote how would you go without cognitive disabilities because it wasn't until the 90s as well that people with cognitive disabilities were allowed to vote how do you even access it yeah and while it was 1993 that they put this forward it was still into the 2000s that they're working on accessibility and i can tell you the last two times i've gone to vote i've been ended up in tears and i'm an advocate who does this like full time you know but it's so frustrating to have the inaccessibility right there especially when it's very easy to address and it's mostly been attitudinal accessibility which is a huge thing and attitudinal accessibility is going back to gatekeepers it's people who don't realize that the power that they have to make something accessible and often they've been told about it but they haven't they just don't get the importance of it and that's what i've had to deal with both times i went to vote one time i was advocating for myself another time i was advocating for someone else but both times it was just so frustrating and you get out of there and you think why do i try and it invalidates you as a person it makes you feel like you're unseen and unwanted and a nuisance and that's so disheartening and it is a reason why so many people with disabilities don't vote because why do you want to go through that oh gosh i i mean i can only imagine how frustrated it makes you but it makes me feel frustrated too thinking about how many perspectives aren't represented in the voting polls then if the people who who care about specific issues can't even get to the point where their voice is heard yes and so it's very frustrating that's part of what my organization has tried to do is to not give voice to people but to empower them to use their voice and to find ways to do that and it can be very frustrating because there can be a lot of consultation and not a lot of follow-up action is lagging sometimes yes like i'm currently working with a vancouver pride society and it's great because i'm working with somebody who is really passionate about making pride events more accessible and when i did my audits and the reports i knew that it was going to an organization where everyone was going to read them they were going to be discussed and talked about and i'm used to most of them kind of doing an audit report and then it going in a drawer and it being a box to check them saying that yes we did the report we did the audit but not actually trying to improve and not trying to move forward and so it's really nice to work with the organizations or events that actually immediately put into effect some of the things that i suggest and then look at how they can implement more down the road [Music] something i've noticed within myself and in other spaces that for people who are trying to be aware of inaccessibility people who are trying to even be aware of the way that their biases are impacting people with different identities that there can be the emergence of of shame about or embarrassment or guilt about how there's an enough known to see how you are part of the problem but not necessarily enough insight about how to really shift into being more inclusive in certain ways and so there's i i imagine and i've noticed this in myself even the tendency to over report what you are doing well and under report what's missing or under report like what's like as in this website what's not accessible yeah exactly and i mean it's it's human nature to want to focus on the positive and not think about the negative and and i think there's a conversation to be had about how it's information you know i think we snap to judgment so quickly and it's about kind of providing information for people so they can make a decision for themselves but being aware that it doesn't have to mean something that's negative to everybody and also just shifting that frame of how people think of disability and kind of the needs of people with disability i think with people with disabilities is often an assumption that there's these grand gestures that have to be made in order to make things accessible when really it's things like having staff that has some disability awareness training or having people who are aware that there's going to be guide and service dogs and that the volunteers are to keep their hands to themselves and not ask the pet them and just having some little tips like that is is very informative and really helps both sides and i think that's the thing is that if you frame it in a way where there are ways that you can easily help somebody it makes it a little easier so it's not so much about the the judgment it's right like you are someone who can have a positive impact on this person's participation and you get to decide whether you do that or not and it doesn't have to be about moving furniture and it doesn't have to be about you know these huge gestures it can be just small ones you know like asking someone if they know where they're going and walking them the entire way at their pace not racing ahead of them and making them feel like they've got to hurry up but just going at their own pace or you know finding a quiet corner for somebody who is seeming a little bit overwhelmed by everything that's going on and can't listen to the conversation that you're trying to have really human to human connection you know and really kind of seeing the person and and but it's awareness of how a person can help i did a disability awareness training for the city of burnaby and one of them was a librarian and after the training she came up to me and said thank you i don't feel the need to run and hide every time i see a person with a disability anymore and she was trying so hard not to be ableist that she was doing something that was ableism just that just like four hours of information gave her enough to be able to be like okay i know i can ask questions now and i know that if i don't know the person does and you know the biggest tip when it comes to people with disabilities is if you don't know ask the person with a disability they live with it on a daily basis they know how they need help if they need help right and so it's just like giving people permission to not know um and i think to go back to our conversation about the medical system that's a huge thing is that doctors are trained to to know everything and they're trained that people come to them for solutions and when you don't have a solution that's a failure but it isn't you know it's you can have this ongoing care that's looking at illuminating barriers and there is no solution you know people with disabilities don't need to be fixed we do need some of the ableism and some of the barriers and accessibility to be addressed and fixed but we don't need to be [Music] this seems like a really good place for us to transition into this story that we actually want to get at at the root of this which is this assumption that disability is inherently negative yes and pulling that apart feels like a really important way to move us towards the social model instead of the medical model so do you want to tell a little story of to the listeners just about how we evolved to this being the story that we're talking about today from what we had pitched to you initially oh sure yeah and why that's problematic do you want to see what the title was originally we had thought about the story underneath this being that ability the ability is inherently more valuable and so what i was saying is that often ability is seen as the opposite of disability likewise health is often seen as the opposite of disability which is not the case disability is someone who's has something that limits their ability to go about their daily life and this means so many different things to different people and so there are you know paralympic athletes who are extremely strong and fit and capable and have a disability and then there are people who can barely get out of their house so there's a very wide spectrum but ability is not the opposite of disability that in itself it limits how people think of people with disabilities and it's something that we really need to kind of change the thought pattern of because disability is not inherently negative it's an inherent human experience because not many people get through life without experiencing disability and that's whether it's episodic and that could be something like epilepsy or migraines or whether it's something that's a broken leg it's a temporary disability not many people have gotten through life without you know breaking a toe or an arm or something and uh or there's people who have lifelong conditions that are like diabetes that can be managed and controlled and then other ones that are mysteries and you know they spend their life trying to figure out what these are but there's so many different ways that our bodies our minds our senses can create barriers particularly because we live in a society that expects people to think to be mobile and to sense the world around them in the same way and that's never been the case we have i mean they've shown that uh rates of autism have not fallen or really risen that much they've stayed the same throughout you know hundreds of years there's been all sorts of disabilities throughout it's really interesting if you look into the history of wheelchairs or the history of vehicles that had mobility devices in them particularly in england i mean they had a one point a vehicle where someone could be flat on a bed lying on their back and still drive by use of mirrors that's fascinating oh my goodness it is and so disability has always been around there have definitely been changes i mean the bc paraplegic association used to be called such because at one time there was no such thing as a quadriplegic if you broke your neck that high up then you died and medical advancement now has made it so that people can live and live full lives with you know a higher um spinal cord injury and so there's these changes to disability and changes to perception about disability but disability itself has always been a human experience right finish your thought okay and i was just going to say that that's not inherently negative right it's just part of living with these bodies brains and senses yeah i want to get back to that that last statement that you made in just a moment but to to zip back a few moments the problem it sounds like with saying that ability and disability or antithetical reminds me of earlier in our conversation where we were saying if you think disability looks a certain way then you might not see it in yourself or in other people but also you might not see if disability and ability or antithetical you miss the existence of both in your life i imagine like in therapy working with people who have uh high acuity of mental health issues teaching them to see their ability and helping other people see their ability feels like an important actually act of recovery or resilience that when we think of them as antithetical then we can't make space for both in our lives and we diminish it sounds like diminish the fullness of a human absolutely and i think you know they can coexist together and it's about talking about that and you can be able in one way and not able in another and it's about the shame that is attached to the part that is not able so i mean i was in a power chair for over a decade and there was quite an experience of how many people looked down on me just because i was essentially sitting down and it was very frustrating because there are a lot of prejudice around kind of my mental capability because i was in a wheelchair and so it's these assumptions about what one disability means overall and it goes back to people thinking that those with disabilities are less than and the other reduction of the complexity of you to this thing that other people are telling themselves and others a story about instead of seeing you as a person like i love what you said a few moments ago about just ask a person yeah like they get they're the expert in their lives instead of us on the outside deciding who you are what you're worth what your level of ability and disability is and it you know it's interesting because as a person who's experienced multiple types of disability both disabilities that i identify as disabilities and disabilities that were beyond my kind of recognition of disability when i was younger i had a speech impediment that took two years of speech therapy my speech therapist was mr rhodes and i couldn't even pronounce that for the first year i know i didn't see that as a disability but it was and it's that kind of thing like there's a lot of people who have experienced disability who don't identify it as such because in their head it's negative if it wasn't negative then it can't have been a disability and if you break an arm you know it's an inconvenience and there's pain and there's stuff like that but people often don't think of that as a disability being pregnant is a type of disability you know if you can't bend down anymore if you have to walk slower if you don't have as much energy that's all stuff that affects your daily basis now of course there are different types of disability and how that affects you and there's people who are disabled more by society because if you have a broken arm that is something that's understandable that is something that most people have experienced or know someone who's experienced and therefore that treatment of that person does not alter very much whereas if you have a different type of disability one that people don't have experience with it's not about what you're experiencing on a day-to-day basis it's what you experience going out into that world that doesn't know how to treat you that doesn't know how to give you access that doesn't see you as an equal participant in your society and so there are lots of things that could be called a disability wearing i wear eyeglasses for example if i don't have those glasses then i can't go about my daily life and so that is a disability but that is a completely different type of disability than some of the complex chronic health conditions that people live with that people can't identify with and it's that recognizability that is often really important is people don't understand disability because it's something that has been not talked about for a long time and part of that is because we haven't been out in our community for very long i mean we were institutionalized we were kept in basements we were hidden away from society uh parents were told like concentrate on your other children consider this child dead and just hand it over to the state put an institution don't visit and so we really have been out in communities for 30 to 40 years but it's still something that is quite different to people and they just don't know how to address it they also don't know how to ask about it and so it often comes out in very awkward ways like it was interesting i didn't realize how used to comments by people that i was until i went on a trip with my sister and her partner and he and i had you know seen like a movie together but not much else and so we'd spend a couple hours together but this was a 10-day trip and it was through him that i realized i'm so used to people coming up to me and congratulating me for being outside because we would be out and people would come up and they'd be like oh isn't it nice that you're outside and oh this must be a very special trip and the comments and i just became so used to it that it wasn't until i went out with someone who wasn't used to it and day after day was like what is going on right why are so many people congratulating you for like living your life and that's the thing is that people what they recognized was someone with a visible disability and they thought oh well it must be special that they're out and so it's you know it's interesting just how people perceive disability and that's something that we really have to address and so part of that addressing i think is even in this conversation i was talking about flipping the narrative of disability away from it being inherently negative absolutely to it not being inherently negative but i i guess what i'm curious about if you could tease this out a little bit more would it be fair to say that the opposite is true that disability is inherently positive or does that also feel like a problematic statement i think it depends on who you're talking to i mean disability has brought a lot of positive things to my life i like to say that i could have done it and with half the pain and you know like i it has been both positive and negative in my life um i have met amazing people there are great people within the disability community especially when you bring in the intersectional you know disability community and then all the other identities i've met amazing people i've traveled all over canada and had great experiences and i've been to amazing conferences and there's so much passion but it's brought a lot of negativity because i am in pain the majority of most days and i do my work knowing that i'm limited and i think the hardest thing for me with a disability and i'm still adjusting to this and it's been over two decades is trying to figure out what i could be if i didn't have the limitation of pain being praised for work that i'm doing but knowing that i can't take on as many contracts as i want to also seeing as much work as there is to be done and only being able to kind of bite off a small chunk of it and that's very hard and has taken a lot of kind of psychological work to be able to to balance that of not doing myself more damage by taking on more than i can handle and that's a really hard thing that a lot of people struggle with is that kind of finding the balance of what you can do that doesn't harm your body but that also feeds your need to be productive and i think one of the problems is that there's this belief thanks to capitalism that you are not a productive part of society unless you are productive and it's not true i mean everybody is inherently valuable and that is something that is at the heart of disability is that everybody has value and their productivity may not match others and it may not look like others but that doesn't mean that they have less to offer and so how do we raise those people up so that they have the opportunities and i find social media really interesting because there's a lot of moralizing around social media and how you know delete facebook uh and get off twitter whereas for the disability community it has opened up a world for people who are isolated who are unable to leave their house there's even been documentaries done where people who have met on youtube have videoed each other and interviewed each other about having chronic health conditions and and edited this together and so it's opened this whole world up and so for one person who is able to get out to the outside world social media is not needed but for this whole other group of people it is and i think it goes back to what you're saying about like inherently negative inherently positive it's it's really not either it depends on the person it depends on what the disability is but it also depends on what access they have and that's access to the medical system that's access to community that's access to you know to education whatever it is that they want to access do they have that and so it goes back to the the whole point about it being the ableism and the inaccessibility that is the big issue we see people who see someone with a disability and go oh phew thank goodness it's not me wow yeah um but they don't actually know what that person's life is like and i had an experience where i was out so i was having a great day and i had a guy who came up to me and said uh he'd been having the worst day of his life and he got fired from work went home found his wife with a neighbor she kicked him out and he was thinking of killing himself and he said but then i saw you and your wheelchair smiling and i thought if she can do it i can do it too and he had this assumption that my life must be miserable because i was in a wheelchair and therefore my smiling was this like brave act and i couldn't really say what i wanted to because he was in a fragile state so i suggested he go find some support but i know that when i go out to the world with a mobility aid people see me and think that they think thank goodness that's not me or they use me as an example for why they shouldn't be thinking they have a bad day without actually knowing the context of my life and it's very frustrating to know that people do that well there's the one of the things that i think about lots is how we compare suffering yes and a strategy to make ourselves feel better is you know at least i don't have that problem or somebody has it worse but what we miss in the process of doing that is devaluing the other person and creating an object out of them to kind of bolster ourselves up instead of seeing that all lives include pain and goodness and suffering and joy and vibrancy and holding all of it in tension together and i also do it in another way which is inspiration porn which is to hold up kind of someone who seems to be doing something extraordinary um there's a an uh paralympics advertisement and they call the paralympic athlete superhuman you know and it's this idea that someone who has a disability and is succeeding is a superhuman and it goes to the idea that success and disability are opposite to each other as well right um and so often you'll hear this person overcame their disability instead of they live with a disability and they succeeded you know it's right it has to be that they overcame it it's not just that they live with it which then again perpetuates this narrative that disability is negative and you have to conquer it and decide to have value or success and you know the making people with disabilities into an object is often seen again on social media where you'll have a post of say a mcdonald's employee who is feeding someone who's a quadriplegic and can't feed themselves and the post will congratulate the person who is helping and name them and say nothing about the person with a disability because the person with a disability is a prop and a story to make people believe in the good in the world and the thing is if you think that someone being kind to someone with a disability is extraordinary you need to step back and think about the ableism that's inherent in that what do you think the tension is then between using images of people with disabilities to actually create visibility and power and distribute it amongst all bodies of all people versus making someone with a disability into an object for inspiration or ableist right kind of course first of all it needs to be people with disabilities who have some control over that so first of all was that person asked if their picture could be taken was that person asked if their picture could be shared or was that person asked to frame the story you know one of the quotes that uh if i could erase quotes from history is uh by the skater scott hamilton who said that the only disability in life is a bad attitude which is an absolutely horrible quote and and that's the thing is that people like to believe in these catchy little phrases or these images because it makes them feel safer in their assumptions and where they're coming from and the narratives that are done by people with disabilities about people with disabilities often confront those narratives right and so that isn't what makes people comfortable about seeing stories for people with disabilities and that's the hard thing in trying to get the stories out when oscar season rolls around you know there's going to be a story about someone with a disability and they're either going to overcome something or they're going to want to commit suicide or they're going to die and make somebody else's life better because those are all narratives that people are comfortable with when it comes to disability but trying to get a movie made where it's actually played by someone with a disability where there's people with disabilities who are on the writing staff who you know are directing or producing or being involved in any way is very difficult and that's the big problem is we need more stories by people who have actually experienced it and there's so many barriers there there was a show by jim jeffries i think it was called legit and one of the characters has muscular dystrophy um and he wanted to hire someone with muscular dystrophy except the laws in the states don't allow people with disabilities to work the same hours as those without and this it didn't matter whether you could or not it just was like if you have a disability you can't and so it would cost twice as much and take twice as long in order to have the character played by someone with a disability and so therefore they went with someone who didn't have a disability to play it and then they brought in people with disabilities for smaller parts and so this is the thing is that there are all these gatekeepers and laws and barriers to that participation so it's not just one thing it's not just that you know there's not enough production teams that want to bring people on it's all the barriers that get in the way of that being viable when we think about ableism two of the points that i'm aware of we've talked about already the social versus medical model and then the gatekeeper piece yeah um people people even trying to be helpful but not being helpful people deciding stories or or narratives or opportunities about people with disabilities without the people with disabilities or people disabled yeah getting a chance to speak for themselves or giving consent but the third piece that that i've thought a little bit about because i've seen people have different reactions to it is language right and you even just heard it in how i framed the question people with disabilities disabled people and how different people have different positions on the language that's one of the ideas that i've heard is to say people with disabilities kind of in some ways pathologizes disability versus you know saying of course i i'm disabled or right right so can you just talk a little bit about language and even how how you use language yourself around that so there's uh person first and identity first and person first is where you put the person before the disability so person with disability person with cerebral palsy and identity first is where you cannot separate the disability from the person and it's typically used in the autistic community it's also used by the deaf community although deaf community do not consider themselves to be disabled they're people who can't hear there are people who are deaf who have disabilities but i just want to be clear that the deaf community do not consider themselves to have disabilities and so identity first is really about that fact that you can't separate your disability from who you are i prefer identity first because my life is very much shaped by my disability what i do who i am that all came about because of my disability and that is positive and that is negative and person first is to an extent still a society that is uncomfortable with disability being a main part of a person's identity where we still need to distance the disability from the person and it goes to the overcoming disability and some people are more comfortable with that and it also goes to the fact that people are still trying to convince people even though it's 2020 that people with disabilities are people too um and so it's about trying to educate people that we have the same wants needs hopes dreams as other people and trying to center the people part because the disability part takes over right and that's when i go out into the world with a visible disability people just see my disability they just interact with my disability that's all that they can think of and so it's people wanting to be seen as a person first and having the disability come second and when i'm talking about people with disabilities i typically go back and forth between the two because there is more of a shift towards identity first but we're not there yet and so it's about trying to be aware of how we use language i mean one of the things that we're currently doing with my organization is we're also moving away from using the word inclusion because the word inclusion is not inclusive in itself because it's always centering one group so it's it's able-bodied people pulling in non-able-bodied people it's white people pulling in black people it's you know so it's not equitable and so that's one of the things able-boding in itself is ableist because disability is about more than body right it can affect your brain it can affect your senses and so the fact that we use able-bodied is not good i tend to use non-disabled i also tend to use words like non-disabled that center group that is not typically centered so i will say non-black as opposed to white right because for too long certain groups have been centered and so i think language is very important and i think it really does shape how we think about people but i also think sometimes there's too much of a focus on language and what gets missed exactly and i mean in my disability awareness course i say you know hannah uses a wheelchair how does she prefer people refer to her and the answer is hannah like i think people often try to get so focused on the language that they miss the person that's in front of them and it's not often where we have to use people with disabilities or disabled people when we're talking about a person we just are using their name that reminds me of what we were talking about earlier yeah and just asking a person how would you like me to refer exactly to you how what do you use person first language to use identity first language yeah and i mean you know i see as well in the lgbt 2s ia plus where they show that high school students don't identify with any of those and so language is always shifting and i think it's it's important to try and be aware of what the current language is but i also think that we need to do better in not concentrating fully on how people are saying things you know we need to if we don't think that they're using terms that are appropriate then we have that conversation i think there's so many different groups that have terminology that people are trying to keep up with that we need to have a bit of patience especially when there are shifts like from people first identity first to allow people to catch up and the thing is that people with disabilities like any other group of people have such diverse people within it right and their own experience with disability where they are access to information is going to be very different and so i think that's really important as well could we summarize this then by simply just stating that disability is not inherently negative it is not yeah and that there is so much more to a person absolutely than than their disability and yet it is a central part of who they are and has shaped them in some way for some i mean for some people the disability is something that they live with and they're used to it but it doesn't necessarily shape who they are that's a great point in my mind i was thinking about lifelong and consistent or early in development but you're right disability could come and go exactly yeah and so it may be something that they're prepared to deal with when it comes but it's not something so that's the thing is it's such a a huge array and i mean i i think back to something that you said in one of the prior podcasts which was about thanking your body and you know it's interesting because people discover that i'm disabled and kind of pity me and are glad that they're not in my body but the thing is my body's actually quite a rock star in my opinion can you say more about that absolutely i have a disability but like what i put my body through and what my body is put through and how it has still managed to help me get out into that community is amazing like there's so many people with chronic health conditions who put their bodies through a lot or who ask a lot of their bodies and our bodies show up day after day and it's the same when you have cognitive issues or you know if you have a traumatic brain injury what you are putting your brain through and the retraining when i had depression i had suicidal thoughts for several years and my brain you know was sending me the wrong messages but it also worked with me to change how i was thinking and it it was able to be fluid and able to adjust and i think that's the thing is that once again that focus is on the negative and there's a lot of things that my body limits me in but there's also a lot of things that this body can do that is impressive and i think like you were saying about thanking your body in the in the last uh or in one of the last episodes that i heard is that's really important too is recognizing that people with disabilities have like differing abilities and kind of their perception of their own body your senses or brains is very different from people who are looking on the outside right so i think you know my kind of overarching theme of this would just be like being aware of people's stories from their own perspective not making your mind up about people and asking you know questions but if they say no then respectfully you know don't continue but really just be open to conversations like this and learning more about people with disabilities and how there's so many different experiences within that but how people's perceptions which is created from an ableist society create both internalized ableism for people with disabilities but also for those who have no experience with it yeah so well said anything else you want to say before i shut this off heather no i think we're good you said it all and killed it okay [Music] thanks for listening to the podcast today everybody if you'd like to talk more about this we're going to meet this sunday at the sunday thing just check all that out at theliturgists.com you can join the community thanks to tasislair haydn for editing this episode thanks to our patrons for making everything we do possible all the love [Music] everybody