#69 | April 2023

THE MAGAZINE
OF DEAFBLIND
INTERNATIONAL

In our Family
the Word
Blindnesswas
Forbidden!
Natalia Demianenko about the ability to touch
vividness, a trace she wants to leave behind,
and why her life isn’t a medical record.

Page 59

ISSN 2712-763X

E-version #7

DbI Communication
Ambassador:
Call for Action
DbI’s newly formed Communication Committee (DbI ComCom) is reachingout your help!
We expect an Ambassador to take DbI’s communication to the next level
by leveraging your knowledge and expertise in this area. As the old saying
goes, it takes a village.
We assume that an Ambassador has well established communications withlocal, regional and maybe national media, an inspiring website and/or an involving social media presence. We believe that these resources could help
us to spread the word about deafblindness, quality services and DbI allover the world.

CALL
FOR

What are the responsibilities of a Communication Ambassador:
1.

Assist DbI in ensuring that its social media posts are reposted on yourorganization pages within a short period of time (1-a5 business days).

2. Assist DbI by ensuring access to your media network and sharing DbI
press releases and communication with your media network within ashort period of time (1-5 business days).

3. Assist DbI by having the key contact keep his/her ears to the ground toassist in sourcing regional news and information that could be sharedwith DbI membership and can be posted on DbI pages.

4. DbI would be grateful to have the key contact act as an ambassador
and connector within their geographic area.
Organizations serving as DbI Communication Ambassadors will receive theofficial DbI Communication Ambassador Logo to be used freely in all of
their communication. You will have your finger on the pulse of DbI’s communication and be fully informed about worldwide developments in ourfield. Your organization will have a presence in the upcoming short film
about DbI’s Communication Committee ComCom. In addition, twice a year
you will be invited to join an online meeting with ComCom to discuss thecollaboration and the further development of DbI’s communication.
Help us to make a difference for people with deafblindness worldwide andjoin us as a DbI Communication Ambassador! We are looking forward to
your answer.
Please reach out directly to Roxanna Spruyt Rocks about your interest at
r.spruytrocks@deafblindontario.com.

CONTENTS

ADDRESS BY THE PRESIDENT OF DBI

3
NEWSRegister Now for the 18th International World
Conference | Ottawa, Canada, July 22 to 28,
2023

5
DbI Awards – It’s Nomination Time

7
Certification March, 2023

9
Yarn Bombing March, 2023
Making Connections on a Global Scale for
Deafblind Awareness Month

10
News from the Network Coordinator

11
DbI Communication Network Report March,
2023

12
DbI Outdoor Network Adventure Week 2023

17
DBI Technology Network Meeting

19

DBI REVIEW | #69 | April 2023

ARTICLES
Pedagogical Strategies for Children withCortical Visual Impairment: Addressing theUnique Challenges in the Educational Process23
Proposal for Standards to Enable Tactile
Observation in Museums, etc.

28
Video Analysis of Educational Practices forChildren Having Multiple Disabilities and/or
who are Deafblind in Latin America and the
Caribbean is Analyzed Through Films

33
Model School: Quality and Leadership in
Education of the Individuals Having Vision
Loss, Multiple Disabilities, and the Individuals
who are Deafblind

40
EXCHANGE OF EXPERIENCEInternational Training Program on
Deafblindness Had its Kick-Off in Zambia andMalawi45
Tactile Working Memory Scale at Perkins

49

CONTENTS

German-Speaking Countries Establish a
Professional Training to Become a CompetentCommunication Partner for the Individuals
Having Congenital Deafblindness or Similar
Needs

53
First Ever Trek by Deafblind Delegates from
India in Nepal – a Unique Adventure

56

INTERVIEW
In our Family the Word Blindness was Forbidden!

59
Community Stands for “Let’s Do It” Instead of“Give Me”

66
NETWORKS AND NETWORKLEADERS

71#69 | April 2023 | DBI REVIEWADDRESS BY THE PRESIDENT OF DBI

Dear friends and colleagues,
About four years ago I was asked
how I see the coming years for
Dbi, and what strategies and priorities would I envision going forward. I remember saying that Dbi
will be building towards a strong
team and clear focus, (diversity/
inclusion, education, communication, and research). And thatis what we did - by using thestrength of the network organization that we are, we have built
bridges with other relevant organizations in the field worldwide
and most of all we have foundways to meet (conferences orotherwise) so we learn and share
our stories, knowledge, and experience. We also did a lot so
we can ensure that our focus isbrought forward in the context
of continuous co-development

DBI REVIEW | #69 | April 2023

FRANK KAT
and co-creation with other organizations. We were able to makea difference on global, regional, and national levels to ensurethat focus is put on the needsof persons with deafblindness,
their families, and the professionals who provide services. And so
we became more and more THE
point of connection in deafblindness. Outreaching communication is “key” in our global organization and with the input andcreativity of ComCom and all
our ambassadors we made major steps forward. Looking at theactivity of all of our networks at
the moment, the research that is
initiated and shared, the development of the ICF core set, the collaboration with the International
Communication Rights Alliance,

PRESIDENT OF
DEAFBLIND
INTERNATIONAL

3

Address by the President of DbI
and the regional conferences we can saythat those are all great examples of how we
as a team, members, friends, and colleagues
did work enthusiastically towards our goals.
So what will the future bring? We will definitely keep our focus and grow further inthe role of THE point of connection in deafblindness. One of the major activities will be

the call for immediate respect of the rightto education for children who are deafblindand have similar needs, through our fouryear global Campaign for education. We
come from different places, have different
stories and experiences, we have common
goals and values and we can accomplish
great and important things together!

Thank you for being part of Dbi,
Frank Kat President

4#69 | April 2023 | DBI REVIEW

News
NEWS

Register Now for the
18th International World
Conference
Ottawa, Canada,
July 22 to 28, 2023
Canada welcomes you to the 18th International
World Conference taking place in our nation’s capital, Ottawa, from Saturday, July 22 to Friday, July28, 2023.
The conference will be held at the
Shaw Convention Centre, internationally recognized as one of themost accessible venues. This venue is conveniently located withinwalking distances from the conference hotels and in the downtown core of Ottawa.

students, and key industry stakeholders.

For the first time, this conference
will be designed as a hybrid event
offering the chance to attend it
both online and in-person.

As part of the conference program, on July 26 at 7:00 p.m., there
will be a screening of a film produced by Michael McNeely, an individual who is deafblind and supported by Deafblind and Sensory
Support Network of Canada(Sensity). Michael shares the real-

We are anticipating 600 in-person
participants including DbI members and staff, content experts,

DBI REVIEW | #69 | April 2023

Join us as we present keynote
speakers like Rick Mercer from
Canada and deafblind ambassador Kevin Frost among many other luminaries.

FRANCO CIGNELLICANADIAN HELENKELLER CENTRE,
MARKETING AND
COMMUNICATIONS,TORONTO,ONTARIO, CANADAFCIGNELLI@CHKC.
ORG

5

News
ity of living with deafblindness and the importance of self-advocacy, independence,and dignified living. Advocacy Club was created at the Canadian Helen Keller Centre in
Toronto. This documentary focuses on thestories and successes of individuals and how
they overcome barriers while advocating
for change within their communities.

The Deafblind Network of Ontario (DBNO) is
excited to present a unique Canadian experience, while delivering cutting-edge educational sessions and bringing together likeminded individuals from across the globe.
The theme of this year’s conference is Global
Connections: The Future in Our Hands.
Register at www.deafblindnetworkontario.
com

6#69 | April 2023 | DBI REVIEWNewsDbI Awards –It’s Nomination Time
It is once again time to acknowledge the exemplary
work of our colleagues.
The DbI International conference
will be held in July of this year in
Ottawa, Canada. One of the highlights of our conference will be
the recognition of the work of ourcolleagues. DbI will once again belooking to present our Lifetime
Achievement,
DistinguishedService and Young Professional
Leadership awards during the galaevening celebration on Thursday,
July 27. Should you know of someone who has made a significant
contribution to the international
deafblind community and whom
you feel might be deserving of oneof these awards, please consider
nominating them.

The completed nomination form
and the letters of recommendation should be forwarded
by email to the DbI Secretariat
atdbi-secretariat@sensity.ca
by Friday, May 26, 2023. The
nomination form and nomination details can also be foundon the DbI website at https://www.deafblindinternational.org/
conference-awards-nomination/
where it can be submitted directly to the secretariat. If submitting the form directly from thewebsite, please email the summary and the letters of recommendation to the secretariat.

CAROLYNMONACOAWARDSCOMMITTEE CHAIR

Young Professional Leadership Award
This award recognizes an individual younger than 40 years of age
who is providing high quality program opportunities. Examples ofcontributions when thinking about
a possible nominee for the Young
Professional Leadership Awardmight be:•Recognition as an up-and-coming leader in the field of deafblindness;•••

Demonstration of excellence,creativity, and initiative in theirwork;
Provision of valuable service
to improve the quality of life
for individuals who are deafblind;
Potential of future impact of
nominee’s work in the field of
deafblindness.

Distinguished Service Award
This award recognizes an individual who has significantly contributed to the deafblind fieldor DbI, internationally. Examples

DBI REVIEW | #69 | April 2023

of contributions when thinking
about a possible nominee for theDistinguished Services Awardmight be:

7

News

•
•
•

overall professional experiences;innovative practices;
unique or extraordinary contributions to
DbI;

Lifetime Achievement Award
This award recognizes an individual approaching to the end of their career who
has made an outstanding, and continued
contribution to services for the individuals
who are deafblind on a national and international levels. Examples of contributions
when thinking about a possible nominee forthe Lifetime Achievement Award might be:••

Publications;
Research;

•
•
•
•
•
•

professional publications, research and/or staff training activities;
leadership at the international level whichhas promoted or improved services tothe individuals who are deafblind andtheir families.

Development and/or practical applicationof new techniques, strategies, or procedures;
Training of personnel;
Advocacy;
Dynamic leadership.

Thank you for recognizing the efforts andoutcomes of our colleagues and for yoursupport!

Carolyn Monaco,Awards Committee Chair

8#69 | April 2023 | DBI REVIEWNews

Certification March, 2023
DeafBlind Ontario Services and CNIB Deafblind
Community Services are excited to confirm
that between July, 2022 and September, 2022,
100 Canadian intervenors took the Certified
Deafblind Intervenor Specialist (CDBIS) certification beta exam at the Academy for Certification of
Vision Rehabilitation and Education Professionals(ACVREP). The final exam was held on March 1, 2023.
The purpose of a beta exam is todetermine how each of the questions of the exam performs. The
exam was developed using professional certification psychometric services.
This certification was developed
to ensure that individuals who
are deafblind receive the highest
standard of services and supports possible. It prioritizes specialized training for intervenors
so they are equipped with thehighest standards of professional
integrity, competence, and ethics.
Certification is a strong step forward in professionalizing the fieldof Intervenor Services. It offersa clear and broadly accepted setof expectations for the role ofintervenor. It is based on an im-

KAREN MADHODEAFBLINDONTARIO SERVICES

portant collaboration between
the Intervenor Services sector in
Ontario, Canada and the provincial government that was carriedout in 2015 – 2018.
The collaboration, or Intervenor
Services
Human
Resources
Strategy (ISHRS), developed adistinct set of best practices
in human resources as well asa set of behavioral and technical competencies, separate fromthe developmental services sector. DeafBlind Ontario Services
and CNIB Deafblind Community
Services took a leadership approach to create this certification
program with ACVREP, which wasin alignment with their sharedcommitment to making a real impact on the lives of the individuals
who are deafblind.

For more details on eligibility, check out the CDBIS Handbook at https://www.acvrep.org/certifications/cdbis-landing

DBI REVIEW | #69 | April 2023

9

News

Yarn Bombing March, 2023.
Making Connections on a
Global Scale for Deafblind
Awareness Month
KAREN MADHODEAFBLINDONTARIO SERVICES

Interested in raising awareness ofdeafblindness across the globe?
Join us to yarn bomb to symbolically come together and increaseawareness of deafblindness. One
stitch at a time. Yarn bombing isa tactile art display with yarn thatis knitted, crocheted or wrappedaround objects in public spaces.

Croatia, Egypt, Ethiopia, France,
Greece, Guatemala, Italy, Kenya,
Netherlands.

It’s
the
3rd
year
when
DeafblindInternational’s(DbI)
Communication Committee encourages everyone to gathersome yarn and knitting or crochet needles to celebrate andraise awareness of deafblindness
during the month of June, designated as Deafblind AwarenessMonth.

Help us spread the word.
Use the social media hashtag#DbIYarnBombing2023 and sharepictures of your creations that
demonstrate how you are fostering a sense of fun for this global
initiative.

With over 70 installations across
6 continents last year, we’re looking forward to 2023 being thebiggest year ever. We are excited to report that as of March
20, organizations, committees,groups, and individuals from cities
and regions in the following locations plan to yarn bomb aroundthe world: Argentina, Canada,Interested in yarn bombing but
not experienced in knitting or crocheting? Be creative by exploring yarn crafts like pompoms orlooms.

Coming together to express yourself through these colourful tactile art displays offers a great
way to unite the community withindividuals, service and advocacy
groups in the field, DbI members,
and partners as well as with global public.
Special note. We will also be featuring yarn bombing at the
DbI Conference in July, 2023 in
Ottawa, Canada.

There’s still time to make your plan to yarn bomb! For more details, checkout https://www.deafblindinternational.org/yarn-bombing/10#69 | April 2023 | DBI REVIEWNewsNews from the Network
Coordinator
Since I last reported on the networks, a lot has happened andmany activities have been undertaken. Currently, there are 16 networks, among which the Family
Network and the Africa Network
are the youngest ones. There iseven a 17th network on the way –the Deafblind Education Network.
The network leaders meet online
every 3 months. It’s nice to see thisgroup of people getting closer andcloser. We don’t only inform eachother on the activities of each network, but also exchange advices
and tips with each other. The number of network members continues growing and that is, of course,
fantastic. This means that we want
to share knowledge and experiences in the field of deafblindness witheach other worldwide and that wewant to be connected.
Collaboration between the networks is becoming increasingly
common and this is a wonderfuldevelopment. For example, theFamily Network already works
closely with the Ibero Latin
America Network. Online webinars on such topics as independent living, cortical visual impairment, and Usher syndrome havebeen recently organized.
The Communication Network has
recently organized webinars in
3 different regions of the world,
especially for parents and family
members. This time, the topic wastactile hand positions.
The
Acquired
Deafblindness
Network (ADBN) continued orga-

DBI REVIEW | #69 | April 2023

nizing short webinars and sending
newsletters.
The Technology Network has organized online network meetings
where the members informed
each other on their knowledge inthe field of technology.
The Outdoor Network was able toorganize an adventure week forthe 1st time after 2 years of Covid.
This took place in the UK with 25
individuals who are deafblind and62 volunteers.
There was a change of network
leader at the network of theAmericas. Marianne Riggio retired
and Chris Montgomery took her
place. At this point, I would like tothank Marianne again for her fantastic effort and involvement anda warm welcome to Chris.

TREES VAN
NUNEN
DEAFBLIND
INTERNATIONAL,
NETWORKCOORDINATOR
T.VANNUNEN@KENTALIS.NL

The above is just a selection of all
the activities organized by various networks in the past period.
During the DbI World Conferencein Ottawa, the Research Network,
the Usher Network, and theCommunication Network will organize interesting pre-conferences.
Just like during the 1st DbI Africa
Conference in 2022, all network
leaders will also introduce themselves in a separate meeting
during the World Conference inOttawa in July, 2023. In addition,
separate network meetings will beorganized during this conference.
The DbI networks are as lively as
ever and I would like to thank everyone who has again put in a lotof energy in the past period.

11

News

DbI Communication Network
Report March, 2023
MARLEENJANSSENCHAIR OF THE DBICOMMUNCIATIONNETWORKIn this report the main part is devoted to the
Deafblindness Symposium organized on June 21,
2022 in Groningen and further the post and coming activities of the DbI Communication Network
are presented. In July, during the DbI World conference, a new chair of this network will become incharge.
Herewith, I say goodbye to you all, as a chair of the
DbI Communciation Network, which I have been for
8 years. My job was to expand the network froma small expert network into a large global networkand to make sure that webinars for parents andfamily members all over the world were organized.
That job is done. I did it with a lot of pleasure andwant to thank you all for your collaboration over
the years. I wish my successors good spirits andmuch fun to go on with this very important andinteresting network.
Report. New Perspectives on Deafblindness Sympothyum,
June 21, 2022, Groningen
On June 21, 2022, the UG Institutefor Deafblindness in collaboration with the Department
of Inclusive and Special Needs
Education organized an (inter)national symposium at the
University of Groningen to markthe farewell of Marleen Janssen
as a professor and the start ofher work as Professor Emeritus.
This symposium was recorded
and will become available on thewebsite of the UG Institute for
Deafblindness.

12

It was an interesting program
aimed at new perspectives in thefield of deafblindness, besides
the topic of Communication and
Deafblindness, which has been andis the research topic from an educational perspective of Marleen
Janssen and colleagues at the
University of Groningen for almost
20 years. Many Master students
and PhD students have graduatedon this topic. At this symposium,
it was celebrated what is achieved
with a focus on the future.

#69 | April 2023 | DBI REVIEWNewsThe Chairman of the day was Prof. Alexander
Minnaert. He welcomed the guests who cameto Akerk, a historical and beautiful church in
the town of Groningen, as well as many (inter)national online participants of the symposium. He emphasized that what the author
has achieved was unique and devoted very
beautiful words to her. He introduced eachpresentation in a very enthusiastic mannerin which he showed that he had immersed
himself in each presenter and each topic.
The first presenter was Dr. Jolanda
Dwarswaard, Director of the Kentalis
Academy of Royal Dutch Kentalis in the
Netherlands. The start of her career was at aschool for the individuals who are deafblind,
now Kentalis Rafael. Besides a very beautiful
speech for the author, Jolanda has an important announcement to make. A new Endowed
Professor will be appointed, and their activities won’t be focused only on deafblindness,but also on the individuals with multiple disabilities. This appointment will be made interms of collaboration between Royal Dutch
Kentalis and the University of Groningen.
By now, in March, 2023, the name is known.
On September 1, 2022 Prof. Saskia Damen
was appointed as Endowed Professorof Development and Learning of People
with Multiple Disabilities and Complex
Communication Needs and People with
Congenital and Early Acquired Deafblindness.
Here, I congratulate Saskia on her appointment, which is well deserved. She worked
very hard for it, and I am very happy that
our collaboration of over 15 years led to a
new professorship. This means that thework and many beautiful projects will go on
at the University in Groningen.
After this important announcement, it
was presented a film by Lisa van der Mark,an individual who is deafblind due to theUsher Syndrome. Lisa is a Ph.D. student at
the University of Leiden. She introduced
Protactile Communication to the audience.
She told us that Protactile Communication
is tactile-centric and goes beyond the tactile
reception of sign language as it is more thancommunication through the hands. Protactile
Communication makes use of contact space,
the touchable surface on the listener’s

DBI REVIEW | #69 | April 2023

body, so that the listener can experienceand embody what is being said. Protactile
Communication started out in the US and has
been spreading beyond the country borders
to also set foot in Europe. You can watch thefilm online as well as find another interesting
clip about Protactile Communication by John
Lee Clark and Jelica Nuccio and the researchof Terra Edwards on Youtube.
“Listen to the voices of parents of the individuals with congenital deafblindness,” wasan important take-home message of Dr.
Rosemarie van den Breemer and Lilias Liston(MSc in Communication and Deafblindness).
They represented family members of theindividuals with congenital deafblindness
and clearly demonstrated that it is of great
success to include parents in research projects or even let them lead these projects.
Rosemarie works on different research projects in Norway and Lilias in the UK. They are
speaking also at the DbI World Conference inOttawa in July, 2023.
Prof. Timothy Hartshorne from Michigan
University and Prof. Walter Wittich from the
University of Montreal presented the content
of two academic volumes on deafblindness
for Oxford University Press. Three of us are
the editorial team in this exciting book project. The 1st volume is entitled Communication
with People who are Deafblind: Assessment
and Intervention and includes the following
sections: identification, assessment, social interaction and behavior, communication development and intervention, dialogical approaches to communication, tactile communication,
tactile sign language and interpretation. The
2nd volume is entitled Learning, Educationand Support of Deafblind Children and Adults
and includes the following sections: identification, specific learning approaches, learning,self-determination and education, participation, work and recreation, family perspective,
professionalization and interdisciplinary support and research, technology and innovation. Over 150 authors around the globe haveworked on these volumes. And the 3rd volume led by the authors who are deafblind isin progress.
An exciting book project of the Groningen
Study Group on Diversity in Communication

13

News
is in progress as well. Presentations related
to this project were held at this Symposium in
Groningen. Prof. Ivana Markova from Stirling
University Scotland spoke about dialogicalsingle case studies. Dr.Paul Hart from Sense
Scotland held an interesting presentation
about the case study of Fiona, in which different theoretical concepts were explained.
Dr. Marlene Daelman from Brugge Belgium(live) with Anne Nafstad, Psych. Cand. from
Statped Norway (online) prepared a presentation about the dialogical concept of the
2nd perspective and illustrated that withan interesting video. Jacques Souriau, psychologist from France, reflected on different epistemological issues. This book will be
written in the coming 2 years in collaboration with the UG Institute for Deafblindness
in Groningen.
The last presentation of this Symposium
made in English was of Saskia Damen,
Associate Professor at the University ofGroningen. She presented several new research topics with a focus on the future andstarted with 4 PhD projects illustrated withinteresting videoclips. The 1st study was thatby Marianne Rorije and was related to theeffects of interventions on tactile communicative agency and sign language, and an investigation on the role of the communicationcoach in these interventions. The 2nd study
presented was that by Kim Tosolini. It wasentitled Thinking in Dialogue and aimed at
improving partner strategies focused on thezone of proximal development regarding the
cognitive abilities of students with congenital deafblindness. The 3rd study by Mijkje
Worm was focused on multiparty communication with children and adults and the 4th
study by Rita Gerkema-Nijhof was focusedon storytelling. Saskia told about all relevant
variables, research designs, and aims of thedifferent studies. As for other goals for the
future, she was looking forward to the implemention of studies on interventions, inclusion of parents in research, peer interaction benefits, tactile sign language, dynamic
assessment, and inclusion of technology andinnovations.

Activities of the DbI Communication Network
On November 17, we organized a worldwide
webinar entitled Tactile Communication andthe Use of Different Hand Positions. During
the webinar, there were practical activities in trying out different handpositions.
The webinar was inspired by the work of
Barbara Miles and Michael Cyrus. It was presented by Helle Buelund Selling, member of
the Nordic Network on Tactile Language andDevelopment and consultant at the Center
for Deafblindness and Hearing Loss in
Aalborg, Denmark. See also the videos on our
website https://www.deafblindinternational.
org/webinar-on-tactile-communicationand-different-hand-positions/
We are preparing the preconference for
Ottawa, Canada in July 2023, which will lastfor 2 days and will be divided into 4 parts
aimed at the individuals who are deafblind,professionals, families, and researchers. The
themes are as follows:•
14

Best practice for the children and adults
who are deafblind, presented by Caroline
Lindstrom and Ann Sofie Sundqvist;•••

Supporting communication developmentin the tactile mode, presented by Esther
Keller and Lisa Monen;
Family experiences: informing research
practice; the presenters still have to be
confirmed;
Experiencing the transition to tactile language, presented by Femke Krijger.

These 2 days are organized by our network
team and the idea is mainly to exchange
and discuss experiences and viewpoints ofeach other and especially of the individuals
who are deafblind and their family members. Bookings can be made at the conference website https://canplan.swoogo.com/
DBI2023#
During the world conference in Ottawa, a
network meeting will be organized. There,
new plans for the future will be discussedwith all the interested network members
who will join the conference.

#69 | April 2023 | DBI REVIEWNews
Another main activity for 2023 is composing
and publishing an Overview Book of 40 Yearsof Communication Articles in the DeafblindInternational Review journal which will be finished in 2023.
The organizing team of our Communication
Network, besides myself, consists of Saskia
Damen from the Netherlands, Meredith Prain
from Australia, Helle Buelund from Denmark,and Steve Rose from the UK.

And if you are interested in this DbICommunication Network, you can become amember by visiting the website of DeafblindInternational
https://www.deafblindinternational.org/
about-us/become-a-member/
For more information, or if you have any questions about this network, contact Marleen
Janssen, on behalf of the DbI Communication
Network team: h.j.m.janssen@rug.nl

Marleen Janssen gives her farewell lecture

DBI REVIEW | #69 | April 2023

15

News

Lisa van der Mark (in film) explains protactile communication

Rosemarie van den Breemer demonstrates tactile bodily gestures

16#69 | April 2023 | DBI REVIEWNewsDBI Outdoor Network Adventure Week
2023
First announcement

WHAT?
A week of fun, exploration, challenges anda lot of fresh air. Exciting and adventurous
Outdoor Activities and the opportunity tomeet old friends or make new ones.

WHEN?
September 25-29, 2023.

WHERE?

Scoutinglandgoed Zeewolde,
avonturenhuis

Scoutinglandgoed Zeewolde.
Nulderpad 5, 3896LV Zeewolde.
The Netherlands.
Avonturenhuis I Ga op avontuur |Scoutinglandgoed Zeewolde

PRICE?
The price has not been determined yet, but
it will be around €525 per person. (i.e. 1 adultwho is deafblind + 1 caregiver = €1.050) A
maximum of 2 supervisors per person is required.

WHAT IS INCLUDED IN THE COST?
All food, drinks, accommodation, activities,
and equipment.

DBI REVIEW | #69 | April 2023

17

News

HOW DO I FIND OUT MORE AND
BOOK?
For more information and bookings
contact Margot and Ingrid
by email ikorenstra@bartimeus.nl
Tel: 0031(0)624341653

WHEN IS THE DEADLINE?
Previous years participants have priority
when they register before May 1, 2023. Thispossibility will expire after this date.
Overall deadline: June 1, 2023.

PROGRAM?
The program will be available soon!

18#69 | April 2023 | DBI REVIEWNews

DBI Technology Network
Meeting
March 30, 2023

MIJKJE WORM

Virtual; 21 participants

DBI TECHNOLOGYNETWORK, CHAIR

The meeting was organized to discuss issues inadvising technology to the individuals having visionand hearing loss, the individuals who are deafblind.
Network members brought their questions to thetable. In 3 breakout rooms, we studied the issues
from various viewpoints and developed possible
solutions.
Case 1. iPad use (Mads Quist-Lund, Consultant RN)
The case was around Ellie, an adultwoman with congenital deafblindness. She has limited fine motor
skills and uses an Apple iPad to
do different kinds of things, forexample communicates with herparents on FaceTime. The questions were: How can she be supported to have an optimal use ofher iPad? How can she keep up
with new features and options as
independently as possible?
Define the user needs
To help Ellie and the caregivers
around her, we need to understand her unique situation andidentify the specific accessibility features that would best suit
her needs. This includes conducting an assessment to identify her
strengths and weaknesses, herlevel of comfort with technology,
and what specific activities shewants to do on her iPad. It is also
important to communicate withher caregivers and support network to better understand her

DBI REVIEW | #69 | April 2023

needs, preferences, and abilities.
By maintaining ongoing communication with them, we can ensurethat we are providing the mosteffective and appropriate support
for Ellie’s evolving needs.
Introduce the technology
It is essential to teach Ellie and the
caregivers different accessibility
features available on her iPad andto explain how they work. This includes such features as Voiceover,Switch Control, and Assistive
Touch. We need to demonstrate
how these features work andshow her how to enable and customize them. During the discussion, many examples of technologies were given:•••

https://www.tobiidynavox.com/
https://support.apple.com/enus/HT201370
https://www.youtube.com/
watch?v=kQq8KilGvss

19

News

•
•

https://www.ablenetinc.com/hitch-2/
https://www.inclusive.com/uk/pal-padswitches.html

Provide ongoing learning
We need to provide Ellie and the caregivers
with resources, such as user guides, online
tutorials, and videos that can help her stay
up to date with the latest accessibility features and updates. It is also helpful to recommend relevant online communities orforums where they can get in contact withother individuals with similar needs andlearn from their experiences.
Customize and personalize
We need to assist Ellie and the caregivers
in customizing and personalizing her accessibility settings on her iPad. We can help
her adjust the screen brightness, font size,or color contrast to better suit her visionneeds. We can also assist her in customizing Switch Control settings to work with her
specific switch type or in setting up voicecommands to control her iPad. And we arestill searching for better usable features.
Provide ongoing support
We need to provide ongoing support to ensure that Ellie and the caregivers continue
to have access to the latest assistive technologies and features. This includes sched-uling regular follow-up sessions to check on
her progress, answering any questions she
and the caregivers may have, and making
necessary adjustments to her accessibility
settings.
Conclusion
During the discussions, there were raised
several points that should be consideredwhen working with assistive technology features on the iPad and helping the individuals
with congenital deafblindness. For example,
it can be challenging to use apps that matchthe individual’s needs. Also, we need to keep
in mind that people with congenital deafblindness often have hard time using screen
readers or other technologies on their own,
so we need to find solutions that work forthem, as well as for the caregivers surrounding them. Finally, we need to make surethat all solutions are damage-resistant sinceyoung individuals can be easily frustrated,
and iPads (unlike wired PCs) are a useful toolas they can take a lot of beating especiallywhen being protected by a hard shell or cover. In summary, we can help and guide Ellieand the caregivers by defining her uniqueneeds, introducing her available technology,
providing ongoing learning, customizing, andpersonalizing the technology to her specific needs, and providing ongoing support. By
doing so, we can help her maintain and evenexpand her independence and achieve hergoals.

Case 2. Screen Reader advice (Fereshteh Halimi, Eikholt)
This case was around an adult man having
vision and hearing loss. A 60-year-old man
who runs a farm and does his finance on thecomputer. He currently uses SuperNova,
but there are other screen readers withdifferent characteristics. It might be betterfor him to change to Jaws, but he prefers
to remain sticked to Supernova that he isacquainted with. What should we advise
him?
Answer
The general answer of taking the client
and their wishes into account as a starting
point for answering the question is similar
to the former case. Many of the advices

20

formulated there also apply to this case.
Yes, Jaws currently has the best functionality, but since the person already knows
SuperNova and has no wish to change ascreen reader, you can also choose to optimize his use of SuperNova. It is not always
the best program that you need to advise,but our advice also takes personal characteristics into account. For example, what isthe person already used to? Which support
has this person when they get stuck? Whichfunctionality is essential for this person andwhich is optional, etc. Many issues can be
resolved in either program, but you needto sit down with the person, show different
options and see what is motivating and/or#69 | April 2023 | DBI REVIEWNews
assistive for that person. All our advices
will be individual, since the individuals withvision and hearing loss usually have specific, non-regular needs.
Other practical ideas for screen reader advice, were:•••

NVDA Screen Reader - Babbage
Use a smartphone or iPad instead of aPC. Sometimes things are easier andmore direct on the smartphones;
You can also help the person in creating
shortcuts, smart buttons, etc.

3. Other questions
The last breakout room gave the opportunity to discuss other questions that were notpresented as a case. Each breakout room
discussed different questions. In this report we summarize some of the questions
and answers. Note that there may be otherpossible solutions, because these questions
were not discussed extensively and wereconsidered only in a small group.
Bart
In my work practice, I regularly hear clientscomplaining when they can no longer findtheir own things in the house, because they
have been moved by, for example, caregivers or family members. I would like to know
if there is something (available or under development) that can detect lost items in thehouse in a tactile way.
AnswerOptions could be:

•
•
•
•
•

Tile | Tile or other kinds of tags.
Disadvantages are that these tags are
not cheap and they run on batteries;
In the future, Google Glass may be an answer for this problem;
AirTag (or similar) now have much better
precision (N-Theory centimeters);
SeeingAI has a function that can alreadybe tested for the purpose of finding(maybe larger) things;
Structure the home environment in sucha way that things are encouraged to be
put back in the assigned places.

Bart
Is there or could there be made a practicalor technical adaptation for the individuals

DBI REVIEW | #69 | April 2023

who are deafblind in order to operate touch
screens on household devices like cooktops?
AnswerOptions could be:•••

Talking household appliances and aids |Feelware
It would be nice to use virtual assistants
that can tell what’s on the touchpads andhow to operate them;
Sometimes it may help to mark thetouchpads with stickers.

Pia
One of my customers who are deafblind has
a problem with reading Braille. This is due tosensory/tactile issues in his fingers. It’s impossible for him to feel the dots. Is there any
way to enhance the Braille pattern, or has
somebody heard anything about anothersolution? He has no problems with typing on
a keyboard.
AnswerPerhaps, one of the solutions mentioned below fits this client’s needs:

•
•
•
•
•

https://www.visionaid.co.uk/dot-watch
https://xtactor.com/
https://venturebeat.com/business/
taptap-a-wristband-that-makes-morsecode-the-language-of-love/
https://yourstory.com/2019/01/appfridays-good-vibes-deaf-blind-morsecode
The use of vibration patterns may help;

21

News

•
•
•
•

The solution may be based on https://www.sense.org.uk/information-andadvice/communication/tadoma/Brainport. https://www.wicab.com/
brainport-vision-pro
Idea. Bigger Braille elsewhere on thebody, or Braille lip reading. Blind student
learns to read Braille with her LIPS
because her fingertips are not sensitive
enough to feel bumps | Daily Mail Online
Kelvin has shared information about See
Me Cane Project – SeeMeCane

Closing and thank you
We had a very good session where all attendees enriched their knowledge on technical aids for the individuals having visionand hearing loss and enlarged their net-

22

work of others who are active in this area.
We thanked all participants and especially
Fareshteh and Mads for brining their cases
into discussion.
Our next meeting will be held during the DBI
Conference in Canada on July 25, 2023 at
5:30 – 6:30 p.m. UTC–4. This will be a hybrid
session. We hope to meet conference attendees that may join our session and possibly also join the network. Network members will be invited and can join the meeting
online even if they are not attending therest of the conference. We will try to makeit an interesting session both for the people
who are in Canada and for the online participants. Any suggestions for this are warmly
welcomed!
With many thanks to Mads, Charlotte andKirsten for their contribution to this report.

#69 | April 2023 | DBI REVIEWARTICLES

Pedagogical Strategies forChildren with Cortical Visual
Impairment: Addressing theUnique Challenges in the
Educational Process
Abstract
The article discusses the educational process of children withcortical visual impairment (CVI).
It explains the challenges thatteachers face when working withthe children with CVI, such as difficulty in accessing information,navigating their surroundings,
and fatigue. The article also highlights the learning difficulties thatchildren with CVI may face, suchas visual attention, visual memory, and visual discrimination problems. Furthermore, it explores
the strategies that teachers canemploy to facilitate learning, including a multi-sensory approach,the use of visual aids, and creating a supportive learning environment. Collaboration between theteachers, therapists, and families
is essential in supporting the educational needs of children withCVI. Early identification and intervention are crucial for promoting
positive educational outcomes forthese children.

ZHIKHAREVA
MARIIA
M.ZHIKHAREVA@
SO-EDINENIE.ORG

Keywords: Cortical visual impairment, education, early intervention, multi-sensory approach.

Introduction
Cortical visual impairment (CVI)
is a neurological condition that
affects the visual cortex of thebrain, leading to vision impairments that cannot be attributed
to the eye itself. CVI is a leading
cause of visual impairment in children in developed countries, withan estimated prevalence of 0.4–
2.5 per 1000 live births (Dutton &Bax, 2010). The symptoms of CVI
are highly variable, ranging fromDBI REVIEW | #69 | April 2023

mild visual impairments to total
vision loss. Common symptoms include difficulty in recognizing faces, objects, or colors, poor depth
perception, and sensitivity to light(Roman-Lantzy, 2018).
The educational needs of children
with CVI are complex and require
specialized approaches to support their learning. This article
aims to explore the peculiarities

23Articlesof the educational process in children with
CVI, including the challenges faced by theteachers and the strategies that can be employed to facilitate learning.

Challenges in educating children with CVI
Educating children with cortical visual impairment represents several challenges tothe teachers. The visual impairments associated with CVI can impact a child’s ability toaccess information and participate in classroom activities. For example, children withCVI may struggle to read printed materials,
understand visual aids, or follow visual instructions. They may also have difficulty innavigating their environment, finding their
way around a classroom or school building,and recognizing people or objects in theirsurroundings (Roman-Lantzy, 2018).
According to the current research, a number of learning difficulties can be identified
in children with cortical visual impairment,
including:

•
•
•
•

Difficulty in visual attention. Children withCVI may find difficult to attend to visual
stimuli, maintain visual fixation, and shiftvisual attention between stimuli;
Visual-motor integration problems.
Children with CVI may struggle with fine
motor skills, such as manipulating small
objects, and gross motor skills, such as
catching a ball or running;
Difficulty with visual memory. Children
with CVI may have difficulties in remembering visual information and recognizing
previously seen objects or faces;
Visual-spatial processing problems.
Children with CVI may have difficulties in•understanding visual-spatial relations,such as size, distance, and orientation;
Difficulty with visual discrimination.
Children with CVI may have difficulties indistinguishing similar visual stimuli, suchas letters, numbers, or shapes.

Another challenge in educating children with
CVI is high variability in symptoms and severity of the condition. Children with CVI
may have different visual impairments andmay require different accommodations andinterventions to support their learning.
Therefore, teachers need to have a comprehensive understanding of each child’s individual needs to provide effective support.
As mentioned earlier, because of the difficulty of accessing the visual world, children
with CVI may become overwhelmed andquickly fatigued. This can lead to problematic behaviors that are often misinterpreted,such as inattention or non-compliance. The
teachers and therapists need to understandthese challenges and develop strategies tosupport the child’s learning and behavioral
needs.
CVI can also come with other disabilities ordevelopmental delays, such as motor coordination challenges or speech disorders, further complicating the educational process.
Therefore, a multidisciplinary approach that
addresses the child’s unique needs is crucial
in providing effective educational support
for children with CVI.

Strategies for educating children with CVI
Several strategies can be employed to support the learning of children with CVI. These
strategies aim to address the challenges
outlined above and promote the child’s engagement and participation in classroom activities.
One of the key strategies is to provide a
multi-sensory approach to learning. Children
with CVI may benefit from using multiple

24

senses, such as touch, hearing, and smell, toaccess information. For example, teachers
can use tactile materials, such as textured
objects or raised-line drawings, to teachconcepts and ideas. They can also use auditory cues, such as verbal instructions, soundeffects, or music, to reinforce learning.
Another strategy is to use visual aids thatare specifically designed for children with#69 | April 2023 | DBI REVIEWArticles
CVI. These aids may include high-contrast
images, simplified pictures, or visually salient materials that draw the child’s attention. Teachers can also use visual schedules
and organizers to help children with CVI understand routines and sequences of events.
Simplified pictures that have clear outlines
or bold colors can also help the child focus
on the key elements of a visual representation. Visually salient materials, such as
brightly colored objects, can help draw thechild’s attention to important information.
It is also important to create a supportive
learning environment that is tailored to thechild’s individual needs. This may involve
modifying the classroom layout to minimize
visual clutter, reducing visual distractions,or providing extra lighting to aid visibility.
Overall, these strategies provide a framework for the teachers and therapists to help
children with CVI access the curriculum, engage in learning, and ultimately reach theirfull potential. By taking a personalized andmulti-disciplinary approach to educating
children with CVI, we can ensure that all students have the support they need to thrivein the classroom.

Collaboration and early intervention
Collaboration between the teachers, therapists, and families is essential in supporting
the educational needs of children with CVI.
Educators should work closely with families
and therapists to develop individualized education plans (IEPs) that address the child’s
specific needs and goals. This may involve
regular communication and feedback between all parties involved.
Early intervention is also crucial for promoting positive educational outcomes forchildren with CVI. Early identification and intervention can help to mitigate the impact ofvisual impairments on a child’s development
and learning. It can also help identify any additional disabilities or developmental delays
that may be present, allowing for early intervention and support.
In addition to collaboration and early intervention, it is important to mention function-

al vision assessment. A functional vision assessment is an important step in accurate
estimation of a child’s visual abilities and selection of educational strategies accordingly. Functional vision assessment may involve
using specialized assessments to evaluatea child’s visual skills, including visual acuity,contrast sensitivity, visual fields, and visual
processing speed. This information can beused to determine the most effective methods of instruction and to identify any specific visual accommodations or technologies
that may be necessary to support the child’s
learning. Regular monitoring and re-evaluation of a child’s functional vision can also
help track progress and adjust educational
plans as needed. By incorporating functional
vision assessment into the educational process, the teachers and therapists can ensurethat children with CVI receive the most appropriate and effective educational support.

Conclusion
Educating children with cortical visual impairment requires specialized approaches
that address the unique challenges facedby these individuals. Strategies, such as amulti-sensory approach to learning, the useof visual aids and adaptive technologies,
and creating a supportive learning environment, can help facilitate learning and promote engagement. Collaboration between

DBI REVIEW | #69 | April 2023

the teachers, therapists, and families, aswell as early intervention, are critical components in promoting positive educational
outcomes for children with CVI. By understanding and addressing the peculiarities ofthe educational process in children with CVI,
educators can provide effective support topromote the development and learning ofthese children.

25

Articles

Figure 1. Class with a child aimed to develop visual perception. Source: Prepared by theauthorFigure 2. Adapting space for activities with children engaged in the early intervention.
Source: Prepared by the author

26#69 | April 2023 | DBI REVIEWArticles

Figure 3. Adaptation of the training manual. Source: Prepared by the author

References
Dutton, G. N., & Bax, M. (2010). Visual impairment in children due to damage to the brain.
Developmental Medicine and Child Neurology, 52(9), 828–833.
Roman-Lantzy, C. (2018). Cortical visual impairment: An approach to assessment and intervention. American Foundation for the Blind.

DBI REVIEW | #69 | April 2023

27

Articles

Proposal for Standards to
Enable Tactile Observation in
Museums, etc.
ATSUSHI MORI

Introduction(DEAFBLIND)

Currently, an increasing numberof Japanese museums, art galleries, and other facilities (hereinafter referred to as “museums,etc.”) are taking initiatives, suchas audio guided tours, giving audio commentary, and installingcommentary panels with Brailleand tactile graphics as considerations for the individuals with visual impairments (Moriya & Izuka,2020). However, there are strong
requests from the individuals
having vision loss for permission
to directly touch exhibits rather
than to get audio or Braille commentary (Hirose, 2012). Therefore,
based on the results of a field survey of 5 museums and other fa-

PROF. YUTAKA
OSUGI(DEAF)TSUKUBA
UNIVERSITY OF
TECHNOLOGY,RESEARCH AND
SUPPORT CENTRE
FOR HIGHEREDUCATION AND
RESEARCH ONPERSONS WITHDISABILITIES

cilities in Japan carried out from
October, 2021 to January, 2022
(Tokyo Metropolitan Foundationfor History and Culture, 2022),
this paper examines the criteria
for enabling the individuals having
vision loss, including the individuals who are deafblind (hereinafter “individuals having vision loss,
etc.”), to view and observe (hereinafter referred to as “tactile observation”) by means of the senseof touch. The accessibility museums, etc. exhibits are proposedby examining standards to enable
the individuals having vision loss,
etc. to view and observe exhibits
through touch (hereinafter referred to as “tactile perception”).

Creation of draft tactile observation accessibility criteria,version 0
Based on the 1st author’s actual
experience, the draft tactile observation accessibility criteria draft,version 0, was developed for 3
patterns: when all exhibits can betouched, when some of them canbe touched, and when a model canbe touched instead of an exhibit.
Draft tactile observation accessibility criteria, version 0:•

A2. Are the aisles wide enoughto allow tactile observation
around the objects?
A3. In case if the exhibit consists of several parts, are theoriginal shapes visible?

A. Cases where all of the exhibits
can be touched

B. Cases where parts of the exhibit can be touched

A1. Is there a panel in Braille thatprovides basic information on

B1. Are there panels with basic
information in Braille on their

•
28

•

its size, shape, materials, hazards, and warnings against tactile observation near the object?

•#69 | April 2023 | DBI REVIEWArticles•

size, shape, materials, and hazards, including warnings against tactile observation in
the immediate vicinity of the objects?
B2. Is there a description of the shape ofthe untouchable part or an alternativemodel?

C. Cases where models of exhibits can betouched•C1. Is there a panel in Braille with basic
information on size, shape, materials,••

cautions, and risks of tactile observationnear the model, etc., as well as information on the contrast with the object on
display?
C2. Is the model, etc. size suitable for tactile observation?
C3. In case if the model consists of several parts, are the original shapes of theparts recognizable?

Verification of the draft tactile observation accessibility criteria, version 0
Based on the results of the survey conducted at 5 museums in Japan, we verified whether the draft standard, version 0, presented
in the previous section is appropriate.
Validity of A1, A2, and A3 of the draft criteria, version 0
The validity of the proposed criteria waschecked at an exhibition where it was possible to touch all of the exhibits. There was an
example where a high platform was provided around the perimeter of an exhibit thatwas 2 m high and 2 m thick. It was possible
to touch every corner of the entire exhibit,
but the aisles were narrow, and there wereno lighting protection or Braille panels to explain information and alert visitors. Thus, A1,
and A2 of the draft standard, version 0, aresatisfied. However, it was found that in thecase of large exhibits, it is necessary to prepare a reduced model that can be touchedwith both hands without moving the whole
object while touching the actual object.
Validity of B1 and B2 of the draft criteria,version 0
In the permanent exhibition room, where
several interactive replicas are displayed,
visitors can actually cross a bridge about
25 m long and 8 m wide, reproduced at fullscale and half the distance. Visitors can touchparts of the inner walls and pillars made ofwood to get a sense of the overall size andmaterials. In the Hands-on Exhibition section,
there is a reduced-scale metal model of theexhibit, which is small enough to touch withboth hands and which allows visitors to get

DBI REVIEW | #69 | April 2023

an idea of the exhibit’s overall shape. In addition, the Braille explanation panels installednear the miniature provide information on
the size and shape of the exhibit, so B1 and B2of the proposed criterion, version 0, are satisfied. On the other hand, the findings indicatethat the experiential replica and the Handson Exhibition section are at a distance fromeach other, which means that attempts tocompare them would involve movement, andthat they should be adjacent to each other.
Validity of C1, C2, and C3 of the draft criteria, version 0
The proposed criteria’s validity was verified
using a reduced-scale model made of metalthat is being produced in a facility where afull-scale cultural and historical building has
been relocated, restored, preserved, andexhibited. The model is about the size of an
A4 sheet, and the details are accurately reproduced by unevenness, so that the shapeof the windows and roof can be understoodwith both hands. As of February, 2023, there
is no Braille explanation panel to provide information on the material and size of themodel compared to the exhibit, but this canbe expected in the future, so it was decided
to use the model as a reference. C1, C2, andC3 of the draft standard, version 0, are satisfied. In addition, regarding materials, it canbe said that they correspond to the materials in draft criterion C1, as it is possible tolearn about the timber and tiles used in theinterior walls and floors, etc., through thetour of the building. On the other hand, it isclear that there is no way to know the exterior materials and interior details.

29Articles
Proposal of draft tactile observation accessibility criteria, version 1
Draft criteria version 1
In the previous section, several examples
were examined using the draft standard,version 0. The proposed tactile observation
accessibility criteria, version 1, which focus
on the size of the exhibits to be touched andthe relation between the exhibits and themodels, rather than on whether the exhibits
are directly touched or not, is proposed asfollows.

wood, bricks, stones, tiles, etc., should be
prepared separately.
B. Relation between the model and the real
object•Draft tactile observation accessibility criteria, version 1:
A. Necessary criteria for tactile observation

•

•

•

30

A.1. Size.
The object’s size should be such that it
fits in a palm of a hand or can be touchedwith both hands without difficulty, andif the actual object is larger than this, areduced model should be provided in conjunction with the object. Similarly, if theactual object is so small that it is difficult
to understand its shape, an enlarged
model should be provided in conjunction
with it;•

B.2 Informational content of Braille andaudio panels.

C. Environment required for tactile observation•

C.1. Posting of precautions.

•C.2. Safety measures.

A.3. Materials.
Wherever possible, materials that canbe felt directly, such as wood, should
be made so that they could be directly
touched and felt. If the materials cannot be fully felt because they are out ofreach, the model should be made using
these materials or materials, such as

Wherever possible, a model should beplaced in the vicinity of a real object sothat the real object and the model canbe compared in the same place. A visitor
should be able to smoothly check theactual object after touching the model, orcheck the model after touching the actual
object. Also, the models should be placed
at a height that allows visitors to touchthem while standing, so that they cantactilely observe them without strain. A
stable table should also be provided;

When installing Braille and audio panels,in addition to the title and outline of theexhibits, information on the size of theactual objects (e.g. scale factor of themodels), information that is insufficientfor independent tactile observation (e.g.
different materials used in the models,features that cannot be reproducedin the models), and visual information
should also be provided.

A.2. Shape.
If it is not possible to understand theshape of an actual object in its entirety, a
3D model should be prepared to the extent possible and installed in the same direction as the actual object. In particular,
protrusions should be used to expressfeatures, such as unevenness of building
walls, window frames, etc.;

B.1. Positional relations.

If there is a risk of falling during tactile
observation of the exhibits, or if the exhibits are sharp, or if other precautions
are required, a written or audible cautionary note for tactile observation shallbe posted;

Install fall prevention fences around large
exhibits.

#69 | April 2023 | DBI REVIEWArticles

Figure. Tokyo Photographic Art Museum. Atsushi Mori (to the left), Yutaka Osugi (to theright)

Relation between the actual object and the model
In order to make visitors having vision loss,
etc. understand the shape, size, and materials
of exhibits through tactile observation, museums, etc. should not only increase the numberof actual objects available for tactile observation, but also prepare appropriate models.
For example, in exhibitions of old houses andother structures, it is difficult to physicallytouch everything, even if visitors are allowed
to simply touch the walls and doors. To understand the shape of places that are inaccessible, such as the roof, it is necessary to
be able to confirm the building’s overall shape,

DBI REVIEW | #69 | April 2023

including the roof, using a model of a size thatallows observation with both hands, and to
display the materials used for the roof by themodel, so that visitors can tactilely observethem. In addition, the accessibility of the exhibits for the individuals having vision loss,
etc. may be enhanced by setting up a modeltactile observation course that allows visitors
to walk around the building to check its size
and to see the materials and layout during aninterior tour, and by installing Braille and audio panels at the entrance to explain how to
do this and what to look out for.

31

Articles
For individuals having vision loss, etc., tactile observation is an alternative source of
information to the eye. Just as it is difficult
for an individual without sensory challenges
to visualize an exhibit’s shape by listening toa verbal description with their eyes closed,even if a perfect Braille or audio guide isprovided, accessibility is not high unless anindividual can touch the exhibit. The individuals who are deafblind have difficulty in tactile observation of exhibits while listening to
explanations from a guide using tactile sign
language, etc. It is thus extremely important

to consider accessibility standards for tactile observation of exhibits that take “touch,”rather than “hearing” or “seeing,” as the primary starting point.
This research was conducted in collaboration with the Creative Well Project of theTokyo Metropolitan Foundation for History
and Culture as part of the Agency for
Cultural Affairs 2021 project to promote cultural and artistic activities in the individuals
having disabilities (including the promotionof a symbiotic society through culture andthe arts).

References
Moriya, S., & Izuka, J. (2022). Survey research on shape understanding and affirmation in art
appreciation using the sense of touch. Kankakudaiko Symposium, 46, 21–24.
Hirose, K. (2012). Museums to touch and enjoy. Seikyusha.
Tokyo Metropolitan Foundation for History and Culture. (2022). Cultural future camp: Cocreating new cultural experiences through inclusive design.

32#69 | April 2023 | DBI REVIEWArticles

Video Analysis of
Educational Practices forChildren Having Multiple
Disabilities and/or who are
Deafblind in Latin America
and the Caribbean is1
Analyzed Through Films
Abstract
The purpose of this article is tocontribute to the knowledge of theeducational practices that promote learning in the children who
have multiple disabilities and whoare deafblind in Latin America andthe Caribbean (LA&C) and to complement the observation tool with
the new categories: Collaborativeand Cooperative Teamwork with
the Families and Community,
Universal Design for Learning(UDL) and Play as a Teaching
Resource. To accomplish this,filmed materials of professional

practices in formal and non-formal settings were analyzed following an action protocol. The determination of present indicatorsand of the ones emerging as a result of practical activities that are
aimed to facilitate access to learning will be significant findings to
improve those services that fail to
identify the important educational
processes in this population.
Keywords: multiple disabilities,
deafblindness, inclusion, educational practices, learning.

Introduction
The United Nations Convention
on the Rights of Persons with
Disabilities (UNCRPD, 2006) andthe United Nations Sustainable
Disability Goals 2030 (UNSDGs,

DBI REVIEW | #69 | April 2023

2015) marked a shift from a medical-biological perspective to aright-based one to give place to aparadigm based on dignity, freedom, and equality.

MARÍA B.
FONSFRIA,GRACIELA C.
FERIOLIZOE KARAYANNISHELIANA A.
MOLINACORDOBACATHOLIC
UNIVERSITY

1
The authors of thisarticle inform you thatit has been published in
its full version for the
first time in Spanish, in
CEDOTIC Magazine, 7(2)(2022) of the Universidad del Atlántico, Colombia, while retaining
the copyright.

33

Articles
World Federation of the Deafblind (2021) affirms, “Children who are deafblind are up to
23 times less likely to be in school than typically developing children, and also less likely
to be in school than children with other disabilities” (p. 31).
Hence, the research team wondered which
educational practices have significant
age-appropriate influence on children who
have multiple disabilities and who are deafblind in LA&C as a way to help the dissemi-

Methodology
Subject of study: children who have multiple disabilities and who are deafblind in theage between 6 and 12 years old in formal
and non-formal settings in Spanish-speaking
LA&C countries to be observed by video-films in actual teaching-learning situations, maximum 8 min.
The protocol to be followed was Operational
Definitions of Best Practice UTAH (Buchanan,2015). It was selected as the most appropriate, plus it experienced professionals’ observations.
The categories are as follows:

•
•
•
•
•
•
•

34

A: Communication intervener prepares achild for an activity;
B: Communication intervener announces
who is interacting and what will happen;

nation of new experiences where they havenot been identified yet.
To guarantee the right to education in all
formal and non-formal environments, andpromote quality educational paths, the goalof this article is to describe those practices
that promote learning in children who havemultiple disabilities and who are deafblindand to share the Buchanan protocol emerging new categories.

•
•
•
•
•
•
•
•

H: Student has multiple opportunities tocommunicate;
I: There are opportunities for peer/sibling
involvement;
J: Communication intervener uses consistent cues;
K: Communication intervener provides
appropriate feedback;
L: Communication intervener communicates the end of an activity;
M: The activity develops concepts;
N: Instructional planning;
O: Professional practice/collaborations.

D: Communication intervener provides
and uses special adaptation;

Fifteen of the total of 16 videos received
from Argentina, Brazil, Dominican Republic,
Ecuador, Guatemala, and Panama wereused, since one didn’t show educational
practices.

E: Waiting time and consistent prompting;

The steps of the analysis were as follows:

C: Student is involved in the entire process of the activity;

F: Activities useful in a variety of environments;
G: Intervener models higher forms ofcommunication;•••

Observation of videos;
Identification of categories;
Analysis of video-films.

#69 | April 2023 | DBI REVIEWArticles
OutcomeThe video-films were formed into groups
according to the categories. The tables
demonstrate the observed practices thatfacilitate learning. The term “Present” stands
for the observable category, “Absent” – is

not applied, “Non observed” – sequence interruption, and the term “Mixed” stands forthe categories “Present”, “Absent” or “Nonobserved”.
In the 1st group of 5 videos we observed:

Figure 1. References and categories studied in the 1st matched group
Reference

Categories

Present

A–C–F–M –O

AbsentG

Non observed

–

Mixed

B–D–E–H–I–J–K–L-N

Figure 2. Categories analyzed by video-film in the 1st matched group
Observable
practices

A

B

C

D

E

F

G

H

I

J

K

L

M

N

O

Video 4
Video 6
Video 7
Video 10
Video 15
In the 2nd group of 5 video-films, we observed application of appropriate positioning and reasonable support, different environments, meaningful activities, and family
participation.

Mixed: ways of presentation, adapted equipment, time, student’s interest, family participation, use of signs, objects and movement,
feedback, and announcement and attention
to individual profiles.

Figure 3. References and categories analyzed in the 2nd matched group
References

Categories

Present

C–M

Absent

H–K–N

Non observed
Mixed

DBI REVIEW | #69 | April 2023

A–B–D–E–F–G–I–J–K–L–M–O

35

Articles
Figure 4. Categories analyzed by video-film in the 2nd matched group
Observable
practices

A

B

C

D

E

F

G

H

I

J

K

L

M

N

O

Video 1
Video 5
Video 8
Video 12
Video 16

Present: physical and verbal support andgames.

Mixed: posters, autonomous drinking, support, association of names to photos, higher
communication, signs and verbal communication, parents’ guidance.

Figure 5. References and categories analyzed in the 3rd matched group
References

Categories

Present

G–H–O

AbsentB–D

Non observed
Mixed

A–C–E–F–I–J–K–L–M–N

Figure 6. Categories analyzed by video-film in the 3rd matched group
Observable
practices

A

B

C

D

E

F

G

H

I

J

K

L

M

N

O

Video 2
Video 3
Video 14

Present: natural gestures, choosing, teaching, higher communication.

36

Mixed: positioning, use of adhesives, verbal
support, actual situations, interaction, listing, teacher confirmation, task end, matching, training of assistants.

#69 | April 2023 | DBI REVIEWArticles
Figure 7. References and categories analyzed in the 4th matched group
References

Categories

Present

C–D–E–F–G–H–J–K–M

Absent–Non observable

B–I–O

Mixed

A–L–N

Figure 8. Categories analyzed by video-film in the 4th matched group
Observable
Practices

A

B

C

D

E

F

G

H

I

J

K

L

M

N

O

Video 9Video 13
Present: interaction, anticipation, support,
appropriate activity, higher communication,
options, consistency, appreciation, temporalconcept.

Mixed: calendar, end, teacher preparation.

Discussion
All the programs apply the authors’ theories: a student recognizes who they are interacting with and parents and siblings are
involved. Besides, many services leave communication in the hands of a speech therapist.
In those programs the intervener uses anticipation and completion of activities, turntaking, waiting time, modeling of higher
forms of communication and feedback practices according to the communication levelof a student.
Waiting time is very important to encourage the processing of information by a student. Perhaps, for cultural aspects or lackof training it is not a universal practice.
Governmental regulations on the contents
to be developed in the educational programsand the duration of each class are likely tohave influence on this issue.
Now, inclusion allows schools to be open
to families, friends, and other members of
the community. Adaptation facilitates com-

DBI REVIEW | #69 | April 2023

fort, predisposition, and participation in theclassroom but sometimes the socioeconomic situation of the families, absence of public
policies, and limited opportunities for training human resources hinder their use.
According to Jacob (2021), functional activities are now applied in different environments and so it will also be in the future.
Under the rehabilitation paradigm, the functional curriculum focused on the acquisitionof habits. Modern approach allows a meaningful, more complex learning for life thatcovers different areas of the curriculum appropriate to chronological age.
Partial versus total participation are important indicators. Participation prevents
the acquisition of erroneous or partial concepts while excessive support from adults
limits full participation of students who feeldependent.
Teaching Planning and Professional Practice/
Collaboration require a proposal from a holistic point of view. In LA&C there is a lack of37

Articles
human and material resources, and working
as a team is essential.

Principle 2: A daily calendar with pictograms accompanied by gestures, conventional signs and verbal communication
promotes the participation and achievement of skills to be able to function inother situations.

We highly value the training of both family and community members to extend theschool work to home and the communityand vice versa.
Three new categories emerged during ouranalysis: Working with the Family in theClassroom Context, Universal Design for
Learning, and Play as a Resource for Teaching.

••

Collaborative work favors the transmission of what has been learnt at school to
the home and vice versa;
Some video-films show 3 Universal Designfor Learning principles.
Principle 1: Music to start the day, following the student’s interest and motivations, it helps the organization of mental
schemes and anticipation.

•

Principle 3: Respect to diversity;
Participation in, exploration of, and interaction with the environment promotes
motivation.

The categories pointed out by Buchanan(2015) are mostly present in the professional practices of the reporters in this study.
These antecedents reaffirm the competencies that anyone who works in this fieldshould have. We suggest the addition of 3
action points mentioned above to minimize
the risks of exclusion of students who havemultiple disabilities and who are deafblind.

Conclusions
The categories described by Buchanan(2015) are applied in a significant numberof LA&C programs. Three others emerged:
Working with the Family in the Classroom
Context, Universal Design for Learning, andPlay as a Resource for Teaching. They appeared in response to students’ needs, interests, potentialities, and learning styles
within formal and non-formal educational
environments.
The data show which aspects require attention: career proposals should provide competencies, quality practices, and research.
Permanent training is needed to update human resources (professionals, family, andcommunity). Public policies should favor
the functional perspective, the organizationof class schedules consistent with actual
needs, and the provision of nursing services
for medically fragile children, as well as cognitive, methodological, and sensory accessibility. Hence, we reaffirm the importance ofinterministerial cooperative work.
Finally, we recommend the inclusion of 3 newcategories in Buchanan’s (2015) protocol andtheir validation so that our regional practices facilitate learning and the studying ofother categories to reduce the risks of exclusion and make significant changes in incipient educational programs.

The full version of this article is published on the website: https://www.deafblindinternational.
org/wp-content/uploads/2023/05/Full-Article-Video-analysis-through-films-ENG.pdf

References
Buchanan, L. (Ed.). (2015). Best practice definitions of deafblind strategies. School for the Deafand Blind UTAH.
Jacob, N. (2021). ¡Todos los días son importantes! Actividades funcionales. Asegurando resultados educacionales significativos. Perkins School for the Blind.

38#69 | April 2023 | DBI REVIEWArticles
https://www.kaltura.com/index.php/extwidget/preview/partner_id/2017271/uiconf_
id/43428141/entry_id/1_4e4s-3mw9/embed/dynamic
UNESCO. (2017). A guide for ensuring inclusion and equity in education.
https://unesdoc.unesco.org/ark:/48223/pf0000259592
United Nations Convention on the Rights of Persons with Disabilities. (2006).
https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-withdisabilities-crpd
World Federation of Deafblindness. (2018). Global report.
https://wfdb.eu/wfdb-report-2018/

DBI REVIEW | #69 | April 2023

39

Articles

GLORIARODRÍGUEZ-GIL
PERKINSINTERNATIONAL,LATIN AMERICA
AND THECARIBBEAN,
DIRECTOR, UNITEDSTATES OFAMERICAGLORIA.
RODRIGUEZ@PERKINS.ORG

Model School: Quality
and Leadership in
Education of the
Individuals Having
Vision Loss, Multiple
Disabilities, and theIndividuals who are
Deafblind
IntroductionMARÍA A.
VÁZQUEZPERKINSINTERNATIONAL,RESEARCHER,
ARGENTINA
MARY.VAZQUEZ@PERKINS.ORG

40

A Model School is a place of constant search for improvement, a leader
in self-assessment and innovation, committed to the revision of practices based on each individual’s demand. It is a school with social awareness as they see themselves as a school of reference and support, a
training site, a model for other schools.
Educational
accessin
Latin
America is influenced by multiple factors, including each child’s
unique needs, availability of resources in their home communities and the local economy (Unicef,2021). As a result, children, especially the oness having vision loss,
multiple disabilities and/or theones who are deafblind, often facesignificant barriers to accessing
quality education. Additionally,education systems lack supportsthat assure participation andlearning and there is a shortageof teachers with adequate training to design and implement educational trajectories for the children having disabilities.
In this context, as well as considering Perkins School for theBlind’s 30+ years of work in Latin
America in collaboration with governments and civil society organizations, progress continues inelevating the educational oppor-#69 | April 2023 | DBI REVIEWArticles
tunities for children and youth having vision loss, multiple disabilities and/or who aredeafblind.
From 2019 to 2022, in Brazil, Argentina, andMexico, Perkins developed its Model School
concept, a replicable strategy that transforms education opportunities, access, andsystems for the individuals having vision
loss, multiple disabilities and/or who aredeafblind. The same project included research that aimed to record the process ofchange in teachers and students from theparticipating schools.
This article collects the results and reflections on this experience in 9 schools. Of

Model of change: general approach
Perkins’ Model School approach is fundamentally linked to the concepts of evolution
and change. Now, more than ever, schools
are asked for flexibility to incorporate social changes (Anijovich, 2007) such as recent
heightened awareness around inclusion, diversity, equity, and access. The Model School
concept of change relates to each school’s
responses to current societal, cultural,and community issues. It is individually defined and developed based on each school’s
unique needs, in context and in response to
local conditions.
When put into practice, this Change Modelcontributes to deep understanding of theunique and varied experiences and internal cultures of different schools. Likewise,
it identifies common ground, defining a process that cements the Model School concept as the central axis of change, to ensurea sustained improvement process. Model
Schools follow Perkins’ core principles onchildren and education. These are:

•
•
•
•

All children can learn;
All children communicate, and communication is connection;
All children are unique, so educational
plans must be individualized;
The family/caregivers are essential in the
education of children;

DBI REVIEW | #69 | April 2023

these, 8 are public schools, and 1 is a non-profit school recognized by the government.
Further, 3 of them are regular schools withinclusive programs, while the other 6 are
special education schools. All 9 schools had
the potential to become Model Schools dueto their strong infrastructure and humanresources, and promising practices noted bya Perkins representative during an initial observation session. Additionally, each school
was staffed by enthusiastic teachers and administrators who wanted to learn, welcomed
evaluations, training, and coaching, and wereopen to changing their practices in collaboration with education authorities.

••

Education should promote social relationships and quality interactions;
Education should increase autonomy,
promote collaboration and support, andbe sustained in a pleasant context.

These principles guide our decision-making
and actions, guaranteeing a consistent alignment with ongoing global changes in education and disability, and a model that adjusts
to accommodate for diversity of cultures.
Likewise, these principles promote universal
actions for change, while also recognizing
the importance of situations that are uniqueto a particular student or school. As a result, schools can define a unique educational
style and method that obtains tangible results. This method recognizes the learningand communication potential of a studentwith DV/DM/SC from a perspective of theConvention on the Rights of Persons with
Disabilities (CRPD), and proposes emancipatory practices for the student that incorporate families as part of the team.
The impact of Perkins’ training and supportof 9 schools in our project was evident innumerous ways. Changes were observed in
the attitudes and values of the team members, in the appropriation of new knowledge
resulting in shared best practices, and in
the practitioners’ reflections and resulting
decisions about which actions to prioritize
during the change process.

41Articles
The schools went through the Perkins
Quality Improvement Process for becoming
Model Schools, which included:

•
•
•
•

Selection of schools with the Secretaries
and Ministries of Education or municipalities;
Baseline and yearly evaluations using the
Perkins Quality Indicators to score theschool on a model program continuum;
Perkins International Academy training
of at least 3 professionals per school (anonline or hybrid 3-level training of 120
hours per level);
Increasing family engagement in theirchild’s education by strengthening teach-•••

er/parent collaboration, training teachers
to support the child’s at-home learning,and coaching families on how to become
active members of their child’s educational team;
A series of specific trainings based onteachers’ needs, with follow-ups andmentorship from specialists in the field;
The school’s self-evaluation using the
Perkins indicators, identification of areas
in need of improvement, and strategy
sessions to map out ways to improvethese areas;
Information exchanges with schools fromthe same country and among schools fromother countries participating in the study.

Figure 3. Change Model Cycle (2022). Source: Perkins School for the Blind
Perkins supported the school teams by providing specific training on educating people with
DV/DM/SC so that team members could actively participate in the change process. Though
this process varied to some extent among theindividual schools, it also had shared points
that clearly define common stages of change,
ranging from simple to complex.
At each stage, the change process started
with a member of the educational commu-

42nity taking the initiative for improvement inresponse to training. These stages are:•

Changes in concrete actions, focused on
generating alternative actions to improveteaching processes. The actions arise
from a diagnostic evaluation process withan objective tool. This results in identification of the school’s needs and priorities, with the goal of achieving immediate
improvement;#69 | April 2023 | DBI REVIEWArticles••

Changes from shared reflections on student learning processes, defining collective goals, and growing in the autonomy
of improvement processes;
Innovative changes and projections, characterized by the school’s conversion into
an educational community that promotes
the practice of unbiased self-evaluationand constant study to seek and nurture
innovation, so that the search for new
approaches becomes the norm and not
the exception.

In practice, those responsible for the implementation of this Change Model branched
into new roles and responsibilities and revealed the diverse work contexts of eachschool and the extent of their impact.
In 2022, Martins Bruno, P.R., Manager ofSpecial Education, Tocantins, Brazil, said,
The training with the entire team of the
School Unit and the greater dialogue withthe families of the students was a strengthachieved...this also allowed the multiplication of the training for the teachers of theState Network...what Escola Beira Rio received through Perkins, impacted not only
the school, but the entire local society
in the area of health, for medical referrals and social assistance with the active
search program for students who didn’t
attend the school...we are a school thatis working on the vision beyond the walls
and fulfilling its social role.
Concrete actions allow transformations thatgive an immediate response to the students’
educational needs, and this inspires otherteam members to get involved in a processthat initially may only seem relevant to asmaller portion of the professional team.
In 2022, Poplar M., Teacher at Arena Instituteof Special Education, Cordoba, Argentina,
said,

Being able to make a relationship between
behavior and communication helped theentire team of professionals to reflect
on ways to address certain challenging
and disruptive behaviors...particular situations aroused interest in learning about
adjustments that were made in the classroom so that our students can access theinformation and interact socially.
The coordinated work of the teams grew according to each school’s individual rhythm
and pace, defining roles and responsibilities,
which transformed the way student needsof varying levels are responded to and met.
Vargas Lopez, S.L (2022), Director of theMultiple Attention Center, Morelos, Mexico,
said,
The increasingly transdisciplinary work,where the look of the student is sharedby all the members of the team. It has
made it possible to individualize the attention to all our students at all levels toa greater extent. The work plans...in collaborative construction, more directed tothe interests of the students, allowed toapply at all times the spiral learning thatis so necessary for students having disabilities...The transformation of the classroom spaces little by little unified the work
strategies...
Accompanying this process of change towards the formation of Model Schools has
expanded our knowledge about the scopeof the schools’ achievements and has also
allowed for clarification of Perkins’ Change
Model. The latter allows us to support
schools in creating an effective work planwith shared values and principles, and tointensely monitor and evaluate implementation plans. These evaluations reveal thequantity and intensity of change, and the development of leaders who can reach more
and more students.

Conclusion. Model schools as the central axis of change
In practice, the Model Schools were defining a process of change, combining culturaland organizational dimensions in a diversityof Latin American settings. After 4 years of

DBI REVIEW | #69 | April 2023

study, we can say that the Model School isan organization committed to flexible anddynamic transformation. The ongoing quest
for improvement is the Model School’s cen-43

Articles
tral quality and this translates to a state ofconstant revision and change. The Model
School does not aspire to reach a definitive state or goal, but rather is continuously
evolving and searching for enhancement.
The leadership that this concept proposes
and that each school develops is linked toclassroom management, as well as to institutional management, where the characteristics of the services, the actions of teachers and managers, and the participation of
the family are understood.

Guaranteeing equal opportunities requires
working towards broad recognition of inclusion as a basic human right. Improving the
educational environment for students with
DV/DM/SC means maintaining an attitude ofongoing monitoring and self-reflection, andimplementing practices that promote student autonomy and independence. Forming
teams of professionals trained in developing
communication and participation plans forthe individuals with DV/DM/SC and their families is a key part of this work.

References
Vazquez, M.A. (2022). Development of a New Model to generate changes in teacher practices
and student learning. Perkins School for the Blind.
Perkins School for the Blind. (1919–1922). Contributing to the development of the education ofchildren with visual impairment and multiple disabilities in Latin America.
Perkins International. Development of a new model to generate changes in teacher practices
and student learning.
Perkins School for the Blind. (2019). Content analysis of Perkins Academy Course. Summaryon educational principles.
United Nations. (2018). 2030 agenda and sustainable development goals: An opportunity for
Latin America and the Caribbean.
United Nations. (2006). Convention on the rights of persons with disabilities.
Riggio et al. (2010). Quality indicators for programs serving students who are blind and visually impaired with additional disabilities or deafblindness. Perkins School for the Blind.

44#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCEInternational Training
Program on Deafblindness
Had its Kick-Off in Zambia
and Malawi
On November 17, 2022, 24 excited African teachers and lecturers experienced the kick-off of anInternational Training Program on Deafblindness inMalawi and Zambia. The teachers had been selected from a larger group of 47 African applicants.
The aims of the training program are twofold: 1)
to support teachers and lecturers in Zambia andMalawi to develop professional expertise in educating learners who are deafblind, and 2) to support these teachers and lecturers in enhancing
their academic skills.
The international training programon deafblindness is a collaboration between the Signo Foundationin Norway, the University ofGroningen (UoG) in the Netherlands,
Chisombezi Deafblind Center inMalawi, and Bauleni Special Needs
Project in Zambia. Lecturers who
are trained in the program comefrom Zambia Institute of Special
Education, Montfort Special Needs
Education College of Malawi, andthe Catholic University of Malawi.
Additionally,
resourcefulparticipants from organizations of
the deafblind such as Deafblind
Association of Zambia are included.
During the program, 12 full-day
seminars are provided in each of
the 2 African countries. The topics

DBI REVIEW | #69 | April 2023

SASKIA DAMENKENNETHVERNGAARD

addressed in the seminars are diverse and include categories andetiologies of deafblindness, the impact of deafblindness on interaction, communication and language,
theory on (sign) language and concept development, outdoor activities, meaning-making, fundamental
psychological theories, researchmethods, cultural awareness, andacademic writing. During the seminars, participants gather in groups
in each country to follow 3 partsof the seminar: 1) group discussion on articles and book chapterswhich have been distributed prior
to the seminar by the lecturer, 2)
a lecture provided through Zoom,3) group discussion and group video-analysis after the lecture.

45

EXCHANGE OF EXPERIENCE
The lectures are provided by a diverse
group of lecturers, involving project leader Kenneth Verngaard of Signo, and lecturers of the International Master program on
deafblindness at the UoG in the Netherlands:
Bebbie van den Bogaerde, Joe Gibson, Paul
Hart, Jude Nicholas, and Saskia Damen. Alette
Arendshorst, who is an internationalisation
officer of the UoG, and Marianne Rorije andKim Tosolini, who are two PhD students of the
UoG, are also Involved in lecturing. In addition,
supervision during the group discussion isprovided by several African graduates of the
Master program on deafblindness at the UoG:
Cosmas Goliati, Sr. Emma Kulombe, Douglas
Gawani, Hellen Shakele, and Simate Simate.
The teachers and lecturers who take part in
the program reported that the knowledge
they have gained through the program will
help them interact and communicate with thechildren who are deafblind and follow up andadvise their families. The lecturers reported
that now they have the knowledge and confidence to teach students in a 3-year diploma program in deafblindness offered in both
Malawi and Zambia. A teacher says, “As ateacher, I will pay particular attention to theattachment theory in relation to the interactions and communication with the learners

who are deafblind as well as expose them tooutdoor life activities to enhance environmental experiences.” Another teacher explainsthat the new knowledge gained will help her
improve meaningful communication with thelearners who are deafblind. Participants also
say that the training will help them deliver
powerful advocacy messages to promote therights of the individuals who are deafblind inthese 2 countries. Some of the lecturers also
explain that they feel that the seminars on
quantitative and qualitative social researchmethods will strengthen research on the situation of the individuals who are deafblind as
they are now better prepared to both conduct their own research and to support theirstudents to do the same.
After the 12 full-day seminars, 2 of the mosttalented lecturers from Malawi and Zambia
will be able to receive financial support from
Signo that enables them to apply for a 1-year
international Master program in deafblindness in the Netherlands.
For more information on the Master program in deafblindness see Deafblindness| Pedagogische wetenschappen |Rijksuniversiteit Groningen (rug.nl)
or mail s.damen@rug.nl

Online international training46#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCEGroup photo of participants from Zambia

Jude Nicholas zoom lecture for Zambians

DBI REVIEW | #69 | April 2023

47

EXCHANGE OF EXPERIENCEGroup photo of participants from Zambia project leader Kenneth Verngaard

48#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCE

Tactile Working Memory
Scale at Perkins
Tactile Working Memory Scale (TWMS) is an assessment and intervention tool for the individuals having congenital deafblindness (CDB). It is publishedby the Nordic Welfare Centre (NVC) and writtenby Jude Nicholas, Annika Johannessen, and Trees
van Nunen. The co-authors are members of the
Cognition Network at NVC.
This dynamic collaborative assessment tool evaluates perceptual, cognitive, and social cognitive tactile working memory skills.
The scoring sheet is divided into
3 processing domains: Encode(detection and initial interpretation), Maintain (temporarily retaining), and Manipulate (actively controlling attention). Twenty items
can be scored as present, emerging, absent or not applicable. After
implementation of suggested intervention strategies, the teamre-assesses the skills.
The authors provided TWMS supervisory training to give participants the ability to conduct
TWMS assessments. Activities inthis training included 2 online interactive webinars plus 3 daysof face-to-face training at NVC.
Participants were expected topresent an assessment case,which is the focus of this paper.

DBI REVIEW | #69 | April 2023

PERKINS SCHOOLFOR THE BLIND,
DEAFBLIND
PROGRAM,
DIRECTORCHRIS.
MONTGOMERY@PERKINS.ORG

BERNADETTE VAN
DEN TILLAARTPERKINS SCHOOLFOR THE BLIND,
DEAFBLIND
PROGRAM,
DEAFBLIND
CONSULTANT
BERNADETTEVANDENTILLAART@OUTLOOK.COM

KATE HURST

Figure 1. Yandi and Sara sharetactile attention

Background and TWMS experience
Chris and Bernadette have aconsiderable background in tactile reciprocal interaction andvideo analysis. Bernadette has
been a trainer and coach in her
Deafblind Interaction Program in
the Netherlands and brought thistraining to Chris when he was a

CHRIS
MONTGOMERYPERKINS SCHOOLFOR THE BLIND,
DEAFBLIND
PROGRAM,
DEAFBLIND
CONSULTANT
KGMHURST@ICLOUD.COM

consultant at the Texas Deafblind
Project.
In May, 2022, Chris joined the initiative as a TWMS trainee. He wascollaborating with Bernadettethroughout the process. In July,
2022, Chris moved to Perkins and49

EXCHANGE OF EXPERIENCE
gathered a team for the TWMS process. Twomonths later he received a TWMS assignment.

Phase 1
A typical team conducting a TWMS assessment includes a student who is deafblind andthose directly involved with them. Chris alsodecided to engage the Deafblind Program’s
leadership team in the process. The casestudy student, Yandi, is an 8-year-old boy
with some light perception in one eye, wears
a BAHA and loves movement activities. At

our 1st meeting with the team, we introduced
the TWMS. We reviewed 15 videos of Yandi
and his teachers in a variety of settings. At
the 2nd meeting, we employed a video analysis process which led the team to discover questions about Yandi’s tactile-bodily expressions.

Phase 2Using videos and team reflections, we conducted the assessment and scored the results. Yandi’s scores had an erratic distribu-

tion across the domains. (Figure 1.) Among
the TWMS trainees at NVC, this was a common experience.

Figure 2. Yandi’s TWMS scoring sheet
Bernadette created a follow-up scoring
sheet, that was separating physical and social scoring items. Yandi excelled at tactile
working memory skills related to objects

50with emerging skills related to spatial navigation. In interactions with others, he showedmostly absent skills. (Figure 2.)#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCE

Figure 3. New scoring sheet shows scores separated into physical and social environments
After reaching agreement on scoring results with our team, they expressed a needfor support in tactile reciprocal interaction
strategies.

Phase 3
Our first intervention focused on our team’s
shifting to the tactile-bodily perspective. We
used the movie and reflection exercises ofLandscape of Touch (Van den Tillaart, Vege,
Miles, & Hart, 2014). This was not mentioned
as an intervention strategy in the TWMS
manual.

It was followed by our next intervention: thesocial cognitive strategies of noticing, recognizing, and affirming Yandi’s tactile-bodily
initiatives. A process of video analysis andin-person coaching in the classroom wasstill ongoing when our formal TWMS training
with NVC concluded. Ongoing intervention
and re-assessment will continue.

Reflections and discussion
Quality of TWMS
TWMS is an exceptional tool that looks at a
critical aspect of learning for a CDB student.

The training model used by the developers
is sound.

New additional scoring sheet: physical versus social environment
We feel that the additional scoring sheet wedeveloped was extremely beneficial. We be-lieve that others might find it a useful complement to the TWMS.

New intervention strategy: shift to tactile-bodily perspective
Our team needed this support before we
could start coaching other intervention
strategies. We feel that this intervention

DBI REVIEW | #69 | April 2023

strategy may be beneficial for other TWMS
teams as well.

51

EXCHANGE OF EXPERIENCE
Prerequisite for the TWMS training
To achieve a valid result on the TWMS and
implement effective interventions, we believeassessors should be well-versed in the useof tactile reciprocal interactions. Therefore,
it may be beneficial to verify these skills before participating in the TWMS training.

Need for interaction training
Basic tactile reciprocal interaction strategies for working with the individuals having
congenital deafblindness may not necessarily be a part of the knowledge base of mostteachers in the United States. Given thenumber of the individuals having congenital
deafblindness in the US, we question how asufficient cadre of professionals skilled in dialogical tactile reciprocal interaction can be
developed.

Future plans at Perkins
We envision the TWMS becoming an integral part of the Perkins Deafblind Program.
We are exploring how to effectively include
TWMS as a cognitive evaluation to guide student’s IEP goals and intervention strategies.
We also hope to continue our professional
development for dialogical reciprocal interaction strategies as a foundation for the(cognitive) development of our students.
Our goals in terms of collaboration with theothers in the field of education of the individuals who are deafblind includes helping toraise awareness of TWMS, collaborating withthe authors to possibly expand the cohortof assessors, and develop a train-the-trainer program in the US.
Finally, based on our experience, we determined that assessors and all participants of
the TWMS process need training in tactile
reciprocal interactions. Although ambitious,
our hope is to share interaction training,
currently taking place for Perkins staff, withthe others in the US.

Conclusion
The TWMS training was an enriching experience for the student, the team, and for
us as assessors. TWMS supports cognitive
development, and therefore holds the po-

52

tential for becoming a standard tool in our
Deafblind Program at Perkins School for theBlind and in the field of education of the individuals who are deafblind.

#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCE

German-Speaking Countries
Establish a Professional
Training to Become a CompetentCommunication Partner for the
Individuals Having Congenital
Deafblindness or Similar Needs
The Co-Creating Communication booklet publishedby Anne Nafstad and Inger Rodbroe in 1999 initiateda far-reaching change in European deafblind education and expanded the self-image of the teacher or companion of an individual having congenital
deafblindness to his partner.
Since the publication of 4
Communication and Congenital
Deafblindness1 booklets by the
DbI Communication Network, thequestion of how the concepts
contained therein – which are
fundamental for deafblind education – could be communicatedmore effectively to the circle ofsupporters of the individuals who
are deafblind has been becoming more and more urgent in theGerman-speaking countries.
Only by reading and individual examination of the theoretical contents, transition to the practicalwork seemed to be difficult. An exchange of knowledge and insights
in groups and the willingness torethink one’s own practice by

CHRISTEL SKUSA
CHR.SKUSA@POSTEO.DE

means of video analysis seemed
to be a promising way.
Under the guidance of Prof.
Dr. Andrea Wanka, a projecton the Professionalization of
Pedagogical Concepts throughthe Development of a Qualification
Program in the European Deafblind
System, PropäK EQuaT for short,
was finally launched and fundedby the EU (Erasmus+ StrategicPartnerships,
2015–2018).
Colleagues from Germany, Austria,
Switzerland, the Netherlands, andDenmark were involved in thisprocess.
In course of this project, a manualwith the focus on communicationand congenital deafblindness was

1 German edition of the Booklets, 2014, Bentheim Würzburg.

DBI REVIEW | #69 | April 2023

53

EXCHANGE OF EXPERIENCE
developed in 2018 as the grounds for staff
training, based on the theoretical concepts
and thoughts of 4 booklets and the later
publication of Communicative Relations by A.
Nafstad and I. Rødbroe1.
Participants of these trainings are expected to become competent partners in thecommunication development of the individuals having congenital deafblindness orsimilar needs in communication or to enhance their already existing competencies
in this area.
The manual serves as a kind of a treasurechest, i.e. it represents a collection of ideas
and suggestions for the implementation of
the training units and shows possibilities
for conveying specific content. However, it
leaves it up to the instructors to decide how
to convey the individual topics to the group.
Accordingly, the content and methods described are primarily of an advisory nature.
In this way, the level of the entire qualification can be adapted to the needs and individual questions of the participants.
The managements of the AGTB (Deafblind
Workshop) in Germany, the ÖHTB in Austria
and the Tanne in Switzerland support andpromote the implementation of 120-working-hours training program.
In the meantime, the 2nd pilot run of thestaff training program is taking place with
16 participants from the countries mentioned.
The participants can deepen their knowledge, reflect on their behavior and draw
conclusions for their future actions within various training forms: on-site days,
personal transfer time, educational partnership meetings, online sharing (a clearly expanding element as a result of Covid
effects). And it always comes with the inclusion of their own or exemplary video
excerpts. During the training phase of 14
months, they present their personal development and learning progress to eachother and to interested colleagues at a socalled learning congress.
The feedback so far has been consistently
positive and successes appear to be lasting. The establishment of learning partnerships, where participants freely cometogether in relation to a thematic focus inorder to exchange questions, insights, andsuggestions with each other, has proven to
be particularly favorable. In this way, networks are created across various deafblindcenters in German-speaking countries. In
order to consolidate the network and toenable a continuous exchange and gain in
professionalism, it is planned to organize
a seminar day every 2–3 years, which willtake up and deepen a topic chosen by thetraining graduates.
The on-site days take place at different locations of institutions for and with the paticipation of the individuals who are deafblind in German-speaking countries. During
the 3-day meetings, thematic aspects aredealt with theoretically, if possible deepenedin self-awareness rounds and practiced intasks with a high practical relevance, including video evaluation.
Transferring thematic contents to the individuals with similar needs2 additionally forms
an essential focus of its own. It is evident
that the proportion of this group of individuals, in addition to the individuals who aredeafblind, is constantly growing and therefore urgently needs to be taken into accountin practical support concepts.
Outside of the on-site days the participants
are asked to work with the concepts ofcommunication development within theirfield of activities and to make a personaltransfer of what they have learnt into theirfield of practice related to the children or
adults who are deafblind and/or have similar needs.
At the end of the training, the participantspresent their findings on a topic chosen attheir own discretion at the learning con-

1 German edition of the Kommunikative Beziehungen, 2018, Bentheim Würzburg.
2 This group includes the individuals who, in addition to hearing or visual impairment, have cognitive development disorders or
special needs in the area of communication due to physical and motor impairments.

54#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCE
gress. And here they are given a great dealof personal creativity freedom.
The individual results presented after the
first pilot implementation and the wide

range of creative implementation left lasting impressions on both the graduates andthe teachers and visibly fulfilled the expectations placed in the employee training program.

References
Nafstad, V. A., & Rødbroe, B., I. (2018). Kommunikative Beziehungen. Bentheim Würzburg.
Janssen, M., Rødbroe, I., & Souriau, J. (Eds.). (2014). Kommunikation und angeborene
Taubblindheit. Booklet I-IV. Bentheim Würzburg.

DBI REVIEW | #69 | April 2023

55

EXCHANGE OF EXPERIENCEFirst Ever Trek by Deafblind
Delegates from India in
Nepal – a Unique Adventure
AKHIL PAUL
SENSE
INTERNATIONAL(INDIA)

History was created when a unique group of individuals who are deafblind went for trekking in
Nepal from India. This has never happened before
where a determined group of the individuals who
are deafblind decided to travel to another country to take up the challenge and showcase to theworld that they can also do it!

Group photo of the delegatesThis interesting activity was organized by Sense International
India in collaboration with National
Federation of the Deaf Nepal(NDFN) and was supported by
Nelumbo Foundation.
Deafblindness is a condition inwhich 2 of the major senses re-56

quired for learning and development of an individual are affectedin varying degree. This affects thecommunication and daily living activities. Receiving and processing
information also becomes challenging.

#69 | April 2023 | DBI REVIEWEXCHANGE OF EXPERIENCEGroup photo of the delegates
From February 23 to March 5, 2023, 9 adults
who are deafblind from India went to Nepal
under an international exchange visit supported by Nelumbo Foundation along with
their caregiver. During the 11-day visit, they
met the members of Deafblind Associationof Nepal (DAN) at their office in Pokhara withall caution and safety measures in place.

The journey started with the group of 8 individuals who are deafblind (3 females and 5
males) that gathered from all the regions ofIndia and assembled in Delhi on February 23,
2023 for their flight to Kathmandu.

Participants during the trek

Participants posing on the view point

DBI REVIEW | #69 | April 2023

57

EXCHANGE OF EXPERIENCE
After landing in Kathmandu, they travelled
to Pokhara next day by 8-hour long bus ride.
After their meeting with representatives ofDeafblind Association of Nepal in Pokhara
they went for the 4-day and 3-night trek
(Pokhara-Ghandruk-Chemrukh-LandrukPokhara).
The group was led by Ms. Shrutilata Singhfrom Sense International India. As the
Networks Support specialist, she coordinates the activities of Udaan, the National
Network of the adults who are deafblind
where more than 250 of them are registered.Udaan members engage in regular
activities to become independent in decision-making and important life skills. Sense
International India works with the individuals
who are deafblind and their family members

throughout India providing them the platforms to exchange information and advocate for their rights.
Altogether, 30 youth who are deafblind and
20 interpreters along with a guide from India
and Nepal went for this 5-day trek including
2-day travel to and from Pokhra. Their efforts showcased their ability, sending out
the message that environment and cultural
life shall be for everybody and that the barrier shall be removed.
During the trek, the group was walking 5-7
hours per day. Their selection was madeconsidering their fitness level and degree of
disability. Also, an easy trek was chosen forthis very first initiative. But now the groupis ready to take up more challenging treks
in future.

For more details, please contact info@senseintindia.org

58#69 | April 2023 | DBI REVIEWINTERVIEW

In our Family
the Word
Blindnesswas
Forbidden!
Natalia Demianenko about the ability to touch vividness, a trace she wants to leave behind, and why
her life isn’t a medical record.
Among the people who are deafblind, there are only few of those
who, as Natalia Demianenko, cansurround you with warm words.
And in an instant, you feel comfortable as if you were talking toa person who you have always
known. You aren’t interacting witha person who is deafblind, you
are interacting with a person. The
limitations and particularities get
forgotten at once. Herewith, thedestiny wasn’t kind to Natalia. It
didn’t stop at taking her vision andhearing away, but also seated her
in a wheelchair. So how did Natalia
Demianenko manage to remain optimistic and maintain positive attitude to life? Where does she haveso much emotional warmth from?

DBI REVIEW | #69 | April 2023

VLADIMIRKORKUNOVAnd desire to explore something
new, to conquer the unknown:
whether these are countries ordifferent sports. During this interview preparation, Natalia has
flown in a wind tunnel. Right! If you
can’t walk, then fly and surmountthe hurdles! Later on, she wrote
about it, “Now I know what is it tosoar. It was as if I became the air
flow myself and joined the speechless but animated conversation ofa hundred of winds”. Our conversation, of course, wasn’t the oneof winds, but it also contains much
freedom, conventionalities overcoming and miraculous beauty ofthe soul of my wonderful interlocutor.

59

Interview
make a positive contribution. For that purpose, I have to find what I’m good at. Find andtry to be even better at it in order to wish toshare it, amaze the world in a positive way.
And also I think that an individual with disabilities, especially with visual impairment,
should pay much attention to appearance.
Willing or not, surrounding people can see us,
and the first impressions are always madeby proverbial clothes. In the ideal case, thevery same clothes as well as the hairdo andother appearance details that depend on us
should attract, generate sympathy and respect instead of a wish to cry alongside.

Natalia, in the essay about yourself you havewritten that you wouldn’t like your story toturn into a medical record. It seems to me,that this is a problem of the individuals withdisabilities in general. Sadly, people pay attention to what is in evidence. What can one
do to make people see a person rather thaneverything else?
Hearing of, reading about an individual withchallenges that they could become the sameas the others notwithstanding the fact of
being an individual with disabilities I always
contract. Looks like a person has made much
effort just to fly under the radar. When I thinkof it, Watches by Sergei Lukyanenko always
call to memory. A person is born as other,with certain capabilities. Herewith, whether
they take light or dark side depends on theirpersonal traits: ambitiousness, selfishness
or propensity for altruism instead and so on.
I guess, it is quite the same with us. At somepoint, I realized that I would never be as everyone else. Well, that’s how my life is. Then
I have to stand out of people not becauseof something that arouses compassion andgrief but something that will bring joy and60

However, the medical record can’t be omitted. Because it is a part of your personal
history after all. Were you born without
any challenges? How did it happen that you
started to lose your vision?
Yes, I was born without any challenges.
When I was 10 months old I started to walk.
When I was a year and 9 months old I took acold. Mother did inhalation for me. My sister
was half a year old in those times. She began
crying, mother ran to her, and I dropped a
pot with hot water on my foot. All sole wasburnt. The ambulance arrived, I got tetanic anatoxin vaccination and they left. A few
hours later, I started to lose consciousness.
We called ambulance again and they took
me to the hospital. And there I got one moretetanus vaccination. They sent me to the infectious disease ward because of the cold.
Mother couldn’t stay with me, because she
had to be with Tamara, my sister. Threemonths before this episode, father left us.
Of course, I personally don’t remember it. I
dread to think of what my mother, being 21
years old, felt.
In hospital, my foot went septic. The doctor
warned my mother that I would be limping
unless they do surgery and transplant skinfrom my hip to the foot. Mother agreed.
After the hospital, mother and grandmotherweren’t noticing anything for a while. Then,little by little, they started paying attention
that I was bumping into objects and wasn’t
reacting to visual stimuli. They thoughtthese were intellectual disabilities. But later,
the doctor told them that I was losing my vision. And after that, during the examinations#69 | April 2023 | DBI REVIEWInterview
in the hospital, they decided that generalanesthesia and double vaccination initiatednegative processes in my organism. Even atthat time the doctors told that, probably, it
wouldn’t be limited to the vision loss. But, youknow, I still don’t have an official diagnosis…
What is the most difficult about having vision loss? What is lacking most of all?
The most difficult thing is dependence. I
think, that vision loss makes this elementof discomfort related to disability the mostconsiderable. Go somewhere on your own,
cook something – things that an individual without vision loss doesn’t even have on
their mind, for an individual with vision loss
might be a real challenge that can’t be overcome in a single go. I’ve got a recent example. We’re doing pickled products for winter.
I need to weigh, but I can’t. It’s a trifle, but it’s
noticeable.
And one more important peculiarity. The
world is beautiful. It’s clear even by senseof touch. Take for example a regular leaf,
let it be a birch leaf. Each vein is drawn gently and the edges are carved as if someone
has been working on them with a magnifying
glass. And what if we take something more
complicate, a rose, for instance? Each superfine and very delicate rose petal, they are all
fitted up in such a graceful cup. You explore
it with your fingers and it takes your breathaway. What impression might be when you
see it! I don’t even talk of a living being, especially of a human body. Everything is beautiful in it. That’s what I’d wish, this beauty. I feelmuch lack of it. Talking about architecture,
I can’t picture it to myself at all. I just knowthat it’s beautiful. Being an individual who
has lost vision early, I can imagine it only inparts, but not the overall pattern of a temple, palace…
Let’s remember of the times when you attended a special nursery school. How did
you feel there? Did you manage to make newfriends? What skills did you learn? What did
you play with?
When I started to attend the special nurseryschool, mother got a job there. She madeit to graduate from a secondary medical
school. She learnt to be a maternity nurse.

DBI REVIEW | #69 | April 2023

When I lost vision and it became clear that
I would have to attend a special nurseryschool, mother received qualification of aneye nurse. I remember walking out to thenursery school hall with our group and myself expecting to see my mother. But the vision was almost lost, so the same situation
occurred again and again. A person in whitepasses by, I come for them crying, “Mum!”.
At times, to considerable embarrassmentof both the one I put down for mother andmine.
At first, mother sent me to the group forvisually impaired. It was rough. Everything
was oriented to visual perception. I already
couldn’t draw, couldn’t see pictures. In a preschool group I was transferred to the children having vision loss. Some of them had
little remaining of vision. Later, I asked mymother, why didn’t she send me to the groupof children with vision loss at the very beginning. Mother told, “Do you think it is easy
to admit to yourself that your child can’t see
at all?”Main pleasant memories are related to thisgroup. Teachers used to read for us a lot.

61

Interview
they were very salty and maybe even peppered so the children wouldn’t make use ofthem as intended. But we were very excitedabout biting a cookie while the teacher didn’t
see us. I made friends exactly in that group.
The world is a small place, and the world of
the individuals with vision loss is all the more
small. That’s why I entered the same school
and the same class with a girl named Masha
and a boy named Seryozha. A girl named
Vika, having little remaining of vision, went toanother school, but she has been telling hello through common acquaintances for many
years.
You were finishing school at home. Moreover,on a wheelchair. How did it happen that you
moved into it? You must have been an excellent pupil at school!
Oh, no! I wasn’t an excellent pupil at all! Do I
make an impression of a nerd? (Smiles.) But
you know, I still have the same nightmare.
Only 5 minutes left till geography class, and I
haven’t only failed to start getting prepared
for it, but also wasn’t even going to do it. I
anxiously open the textbook and clearly realize that I don’t have a chance to learn anything in time. I don’t know, why is it exactly
geography, I have a solid B in it, although I’ve
got zero point zero of knowledge left. The
subject I didn’t like, didn’t know and wasn’t
even trying to change something in this direction is math. Straight from the times
when we started to learn numbers and till
the high school it didn’t excite me at all.
What I liked and was good at were literature,
Russian, and history. In a secondary school
certificate, I’ve got A also in astronomy…

We played with construction sets, with mosaic. I loved to play with mosaic a lot. A softcarpet sticked in memory. You had to takeoff your slippers before stepping on it. There
was a playground on that carpet. You canrun about and fall as much as you like. I and
2 of my girlfriends liked to play role gameswith the dolls. On the same carpet, in thecorner, there were a small chair, a small table and a bowl with toy cookies in it. As far as
I understand, those cookies were edible, but

62

I’ve been studying at school till the 8th
grade. Straight before the New Year’s party,
for which I was getting ready a lot, the temperature raised. It turned out that I had furunculosis. And it was that bad that I got tothe hospital. They had to do surgery. Motherwas trying hard to get across to the doctorthat they couldn’t do general anesthesia. He
replied that anesthesia dose was so insignificant that it couldn’t harm at all. But after thesurgery I couldn’t walk independently anymore. Psychologically, it was very hard to sit
on a wheelchair. When mother and grandmother were starting to talk about it, I wasjust beginning to chin. My uncle persuaded#69 | April 2023 | DBI REVIEWInterview
me. He told, “You have always been independent. And now you depend on the others.
Don’t you want at least to go for a walk on
your own?” I realized, that I wanted it a lot.
Exactly on my own. Then I sat on a wheelchair and has walked around Petergof alone
for the first time. At the beginning, my hands
were getting rubbed to bleeding. And I was often falling. Although the district was familiar,
it turned out that not everything, accessible
while you are walking, is accessible when you
are on a bulky wheelchair. Sometimes, I was
getting lost literary in 2 metres. For example,
I failed to make correct estimations, missed
the turn and stopped understanding where I
am. It happened to me, I got into a muddle inthe street. I heard that someone was passing by. I asked if the Aleksandria park was
far from there. And a woman answered in adisgruntled voice, “Don’t you see? In front of
you it’s written Aleksandria Park. What else
do you need?” But for me these walks meant
a lot. Unfortunately, they ended up when we
moved from Petergof. Our country house isin another place now. And here I didn’t manage to orient myself as I’d like to, although I
have been trying to at the beginning.

to me indeed, that I was just inattentive. That
I mused, didn’t pay attention to what someone was telling me. By the way, I had appointments at otolaryngologist. They wereinsistently telling that I had perfect hearing.
After that it was almost coming to a scandal
at home. Mother was often telling that I was
ignoring her for purpose. Then I stopped
hearing TV and recorder at habitual volume
of sound and was constantly asking thosearound to repeat what was said. And themost difficult part, I was losing possibility tocommunicate by phone. If previously friends’
calls were making me happy, at some point I
realized that I started to be afraid of them.
Then, doctors admitted hearing loss. And
they couldn’t find any hearing aid that wouldfit.
At that time, I began to hold active correspondence in Braille, and later on I got a
computer.

Excuse me, one more complicated question.
In the age of 20 you started to lose hearing.
If we turn to that time, what did you feel?
How did you come through this circle closing from all sides?
I’ve been thinking of it, but not during thetime I was losing my hearing. Significantly
later, when I was writing something like autobiographic story. I have an impressionthat destiny is continually trying to calm me
down. If having lost your vision you can’t live
serenely and you stick neck out, then getseated on a wheelchair. If you haven’t calmed
down again, try to live with a hearing loss.
Or maybe, it’s the opposite. Loss of sensory
capabilities invokes to look at yourself, givethought to your life, and maybe, tell something to the others.
Losing hearing was hard. It is the only thing
I still can’t put up with. At that time everything depended on hearing. I was talking byphone, listening to audiobooks, playing the
guitar. At first, it seemed to my family, and

DBI REVIEW | #69 | April 2023

63

Interview
And what about education? What higher education did you receive? And how was theprocess organized? As far as I understand,it was distance learning?
You can’t imagine how I want to coquet andtell lies now. To tell that yes, it was hard, but
I’m allegedly so strong and extremely goodand coped with all the problems. In fact, it
was in a way that the memories of it still
hurt… I managed to get a refreshable Brailledisplay with the help of a musician, compositor, and music expert who had vision loss andwas living in Italy at that time. His name for
Vladimir Kallistov. When he was in Russia, hecame to our house, helped to configure thedisplay, taught me how to use it. He was texting me in the display entry. Before him, everybody in Saint Petersburg refused to do it.
They just didn’t know how to do it. So I learnt
how to use email and started to hold correspondence with Vladimir Kallistov. He floatedme an idea of higher education. I began tosearch for distance higher education institution. I found the Institute of Open Education
at Moscow State University of Printing Arts.
They have many different faculties, and I
wanted to enter the Faculty of Journalism,
Publishing and Editing Department. The education was fee-based, but the price was affordable. Thirty thousand Roubles per year.
The exam was in the form of e-testing. The
worst grade I received was in Russian. But
I passed it. Entered the university. Then I
wrote to Vladimir Kallistov. He called mymother and was just crying, he was very
touched.
The studies were rough. Even though I was
studying all the time. First of all, computer skills were missing. I didn’t know how toreformat textbooks and my Microsoft Wordskills couldn’t be worse. What do you think
about such a situation, for instance? I wasdoing my term project in the topic of The
Picture of Dorian Gray. We needed to do itof a specific length. I selected the text to
see the number of characters. I checked
the number and got curious what would be
if I pressed Space button. Will the number
change? I pressed it. Well, you know, what
happened next, don’t you? Now, if I did sucha thing, I would immediately undo the command or just wouldn’t save the file. But atthat time I was crying for a long time and64

began rewriting the whole thing… Anotherdifficulty resided in lack of help. Mother was
working, grandmother had passed away, sisters had babies. I could count only on myself.
The program included progress tutorials
with the teachers in a discussion group.
At first, I took it seriously, I was preparing
question, but at the scheduled time none of
the teachers joined the discussion group…
My paperwork was checked only once. The
others were just vanishing into thin air. At
the end of the 2nd year I was getting readyfor an e-exam in printing industry. Having
opened the list of question, I realized thatthey weren’t anyhow connected to what I
had studied. That’s when I gave it up and decided to leave.
Honestly, I regret now. Not because of knowledge, but because of the status. Anyway, having higher education sounds great. Moreover,having completed the 1st year I received aletter from Vladimir Kallistov. He wrote that
he had cancer and wouldn’t live long. I often
flash back to his words. He wrote, that getting acquainted to me and his participation
in my learning of computer were, probably,
the major events in his life. And that he was
happy to leave knowing that he had done it.
He was beseeching me to acquire the higher education and approve myself in this life.
I feel sad, because in terms of education I
didn’t justify the confidence of this incredibly
big man, whom I respected a lot…
I can’t also say that it was a bad idea to enter
the university. Exactly at that time, Natalia
Kremnyova offered me a job in the editorial
board of Your Interlocutor magazine in order to get some practical skills. It had an incredible effect on my life and changed it forthe better.
Did you meet your husband Vladislav at that
period or later?
I met Vladislav earlier. We started to communicate in 2005. He was living in SergievPassad orphanage. An alumnus of a schoolfor the individuals who are deafblind. I saw
his notice in a magazine. Exactly at that time
I felt myself having total hearing loss. I wanted to learn, how people live with it. That’s
why I wrote to Vlad. I was surprised by his#69 | April 2023 | DBI REVIEWInterview
childish and very kind attitude to life. We began texting each other. In a year, he came tovisit me at my house. And a year after wegot married.
In 2008, a misfortune happened to me, I
didn’t succeed to become a mother. I sankinto depression. I got a Chihuahua dog anddidn’t want to see anybody else. That’s when
my girlfriends decided that I expressly needed a computer with a refreshable Brailledisplay. They found Vladimir Kallistov who
helped buy it.
How do you appear to yourself? What traits
are the main ones?
I always wanted to be beautiful. I was reading
about Angelique, Catherine… You might remember fashion for the books about superwomen of those times. I didn’t want to be asuper one, but I often felt bitterness thinking
of appearance. Since childhood, mother has

DBI REVIEW | #69 | April 2023

been convincing me that in appearance I was
and would always remain a mouse…
I remember myself quietly suffering from it
until the age of about 30. Later, when I began
to come out more, I started receiving compliments. And even more of them when I began to be active in social networks. And now
I have no complexes related to appearance.
I understood, that first of all much depends
personally on me, on how I present myself.
Secondly, and substantially, if one evaluates
you critically, it doesn’t mean at all that all
the others will see you the same.
I even started to be loyal to the photos, whichis rare for the individuals having vision loss.
It is pleasant when a burst of positive energy
follows after you upload a photo.
And talking of something but appearance…
I’m a very complicate person, but not a boring one for sure.

65

Interview

Community Stands for “Let’s
Do It” Instead of “Give Me”
MARIA ZIMINA

The Interregional Benevolent Non-Governmental
Organization which is called Community of Familiesof the Individuals who are Deafblind (hereinafter referred to as “Community”) was established in 2015
with the idea of uniting the parents of the children
who are deafblind, that live in different regions of
Russia.
Today the Community consists of over 250 parents from over 40 regions.

Group photo of community members
Main objective of Community activities is making relatives of theindividuals who are deafblind active, especially, their parents. It isnecessary to make more parents
get involved into active work related to improvement of life quality of the individuals who are deafblind.

66

Nowadays, many people talk ofnecessity to search for new formsof social interaction.
Uniting parents for eagerly sought
projects implementation is a newform of social problems solutionthat has already demonstrated its
efficiency.

#69 | April 2023 | DBI REVIEWInterview
Social projects of non-commercial organizations make it possible to develop new work
technologies and fill in blanks in rendering
governmental social services.

Community activities are of project natureand they are carried out in 4 focal areas:

If this is not the case, grownup children withsensory impairments will be able only tostay at home and walk around the yard witha white cane. Parents desire more for theirchildren and they are ready to participate intheir lives not only within their apartments.
One of the ways to do it is to get united andcreate a new reality.

Organization of caregiving and support;

•
•
•
•

Helping parents to organize the processof child’s education;

Occupational guidance and organizationof activities;
Supporting parents (in terms of psychological, legal, consultative, informational
support as well as social project management support).

Wings that prevent from falling

Anastasia Begunova“Mums are like buttons, everything is held together thanks to them,” says the phrase thatpeople like to send each other in messaging
apps on holidays substituting the wish forthe reality in a certain way. In fact, what
can be held together by a regular mother?
Almost the same as by a regular father andany sane concerned person.
But mums-buttons really exist and much isheld together by them. Both uniting othermothers and implementation of important
projects.

not to attend classes sounded imperative.
Shut yourself up from the world in the apartment, fence yourself off from school life (andprobably from the life in general) with the diagnosis – Begunovs family certainly wasn’t
willing to agree with it. Sasha didn’t want
only to study, but also to communicate andmake friends. For Sasha, school was a place,where she could feel herself needed.
Then Nastya suggested a ready strategy. The
child studies at home, but comes to school
to attend some classes, and the school hiresa teacher with the qualification of visual impairment specialist and audiologist.
And Sasha began studying.
Nastya, in its turn, began teaching othermothers, who were still choosing a schooland needed advice.

In Novgorod region, it is Anastasia Begunova,
Regional Department Manager and Project
Coordinator of Everyone Can Study.

“Community is a big family, where everyone
can help each other,” she says. “Seeing yourfellows, friends, you become happier and it
empowers you. You feel support and realizethat it isn’t for nothing.”

Sasha, Nastya’s daughter, also can study.
Even though the school was standing against
it at first. Sasha has visual and hearing impairment and other disorders. Although theeducation system likes the word “inclusion”,
for now it doesn’t completely realize what
to do with such children. A large school wasafraid of little Sasha. No, they didn’t reject toenroll her, but an offer to study at home andKira, Yulia Miroshnichenko’s daughter, is goingto school next year. Yulia is a Manager of theRegional Department of the Community of
Families of the Individuals who are Deafblindin Saint Petersburg. In this city, there are
more special needs schools than in many other towns and cities. But if the choice will be
still complicated, the Community will help withboth information and simple warm support.

DBI REVIEW | #69 | April 2023

67

Interview
There are many of us, and each of us has
specific experience in medicine, education, and child and family’s life organization. I know that any question arises, I will
always find who write to or call in orderto resolve it. I’m very glad to be acquaint-

ed with our wonderful mothers. Everymeeting with them, whether it is online oroffline, gives me strength and new knowledge. The Community is the wings thatprevent from falling.

Two-parts T-shirt
She promised herself to stop crying, took
Daniel home, and a regular, full of concerns
life of a mother and her near and dear baby
started.

Liudmila Archvadze“I’ve learnt of the Time Out project thanks to
the Community,” tells Liudmila Archvadze. “I’dlike it to be developing in our city, in Moscow.
And I’ll be happy, if it happens with my participation. I was a mother of a child who was
deafblind and I understand how important
it is… Time Out and little Daniel missed eachother by a small period of time. A year ago
the parents of the children with special needs
received an availability to take a breath, entrusting their child to an experienced special nurse. Three years ago Liudmila’s son
passed away.
Daniel was born with multiple complex disorders. He couldn’t neither hear, nor see orswallow. During the first weeks of the life
he was living at the intensive care unit andLiudmila was living in hell. The doctors ofthe maternity hospital were offering her tofile surrender of child without mincing theirwords. But Liudmila saw that the baby wasreacting to her and needed her.

Although, it’s wasn’t that regular. For example, Daniel had gastrostomy tube. And when
he, like any self-respecting baby, was asking
to eat during the walk, it was an extra credit question. How can you “get connected” togastrostomy tube without getting the childundressed? This you can’t learn neither at aschool for expecting mothers nor at designer courses. And Liudmila decided to becomea designer herself. To make clothes for thechildren with special needs. A cut-out on atummy for the children having gastrostomy
tube. Zips under the armpits for those having ICP (so it would be easier to put spastic
arms in). Two-parts T-shirts for those whoare bedridden.
“The Community enables to tell,” says
Liudmila. “Not only of my tailor’s shop. For
example, it enables to tell of clothes thatthe government gives out with e-certificates. Of how one can get it. An in general,of how to get something you have rights
to… The Community encourages the ideasof new projects. And the parents get acquainted with what we and our partners
do.

How can one avoid getting into a trap of ready solution
The story of Elizaveta Zimina from Orenburg
also implies the fact that if you want to dosomething well, do it by yourself.

Elizaveta Zimina

68

Everyone has heard a phrase, “I’ve got 2
news for you. One is good and another isbad, which one should I start with?” Liza
smiles. “The bad news is that your child has
special needs. He will grow up, but he’ll re-#69 | April 2023 | DBI REVIEWInterview
main a child in an adult’s body. And what is
the good news? The good news is that you
aren’t alone…”
Liza got a feeling of not being alone in 2018.
At that time, she got acquainted with theCommunity.
Vanya, Liza’s son, was 6 years old. He couldn’t
see well, had hearing loss, and loved enrichment activities and books. But it turned outthat there were only 2 tactile books in thewhole Orenburg. They were kept at the children’s library. And even those didn’t fit forlittle children having vision loss. They were
too hard for perception. It meant, that sheshould have made a book for Vanya and other children with sensory impairment by herself…
By education Elizaveta is an artist, and it
helped working at a book, in which she had
to mix different materials and texture. And
consultations of speech pathologist helped
make the book useful and accessible to thechildren having multiple complex developmental disorders.
Yulia Kremneva, executive director of theCommunity of Families of the Individuals who
are Deafblind, says,

Maybe, one day, textbooks on social management will contain a chapter on a trapof ready solution. Human nature makes
us search for a ready solution, having
faced a problem. And sometimes we evenfind it. If we need a book, we go to the library… You get sick, then go to a doctor.
Is it time to send a child to school? Let’slook for a remedial class. But ready solutions don’t imply personalized approach.
Most likely, some standard set of activities
will be carried out, a person will receivea service… and will be, mildly speaking, at
a stand. Indeed, the problem hasn’t beensolved! There is almost no place for engagement in the system. That’s why someof us took another road. If we don’t have
convenient options, we develop them byourselves, and they meet our needs to
the greatest possible extent.
Elizaveta Zimina says,
The Community helps get united tosearch for new solutions. It helps understand that even having a child with special
needs you can do something for the others… Honestly, I’m afraid anyway. I’m afraidof what will be with our children when theygrow up… And as in a cartoon, I suggest to
be afraid together! Together we’ll be able
to implement many different projects forour children.

What do we need to get united for?
“The Community gives us a feeling that you
can always find support and assistance,”
mentions Tatyana. “Having such a huge support, one can move forwards confidently.”

Tatyana Selezen
In Volgograd, the driving force of theCommunity is Tatyana Selezen. One can easier imagine this fair-haired lady at some party, but not at a social project planning meeting. Nevertheless, exactly she was the one
who helped Volgograd families with special
needs understand, that a person can invent
something on their own, but it’s better to implement it together.

DBI REVIEW | #69 | April 2023

Tatyana’s son, Artemiy, was born premature. He doesn’t see and hear well, doesn’t
walk and speak, but his life is full of eventsno less than the life of a typically developing child: rehabilitation, new skills, which aresmall though, but at the same time important and cheery. To receive a new portionof happiness for Artemiy, Tatyana came to
the Mother’s School. There, she realized that
didn’t want to be only a mother.
In 2018, Tatyana studied at the Mother’s
School, and in 2019 already, became a coor-69

Interview
dinator of this project in Volgograd. Besides,
every year she undergoes training at the
Leadership School that helps parents implement their ideas, find financing sources andinteract with public authorities.
“Just a little while ago I realized my wish to
help myself above all…” she confesses. “And
when I succeed in it, I have energy to help
other families, too. I relearnt how to live. To
live a new life, a special life. I learnt not to beafraid and to believe in myself.”

Yulia Kremneva

70

Yulia Kremneva notices,
The Community doesn’t stand for “giveme”, it stands for “let’s do it”. We aren’t acharity fund that one can turn to and getmoney to solve the problem, when for instance, your house was burnt down andyou get the same new house built. We area union. If you want, you can call us evena team that implies partnership and joint
participation. And if a fund helps resolve
a separate issue, we generate something
new and participate in its development.
In other words, we build a new house together… The Community includes motherswith different experiences. Mothers, thatsuddenly started to move in the same direction. And, as the phrase goes, “There isno other way to advance than by taking
steps.”#69 | April 2023 | DBI REVIEWNETWORKS AND NETWORK LEADERS
Acquired Deafblindness Network(ADBN)

Ibero Latin America Network

PETER SIMCOCK

ximena.serpa@gmail.com

XIMENA SERPA

peter.simcock@bcu.ac.uk

Adapted Physical Activity Network(APA)
On hold
Africa Network
DAVID MUNYENDO (INTERIM)
david.munyendo@cbm.org

CHARGE network
ANDREA WANKA
wanka@ph-heidelberg.de

Communication Network
MARLEEN JANSSEN
h.j.m.janssen@rug.nl

Network of the Americas
CHRIS MONTGOMERY
Chris.montgomery@perkins.org

Outdoor Network
JOE GIBSON
deafblindoutdoors@gmail.com

Research Network
WALTER WITTICH
walter.wittich@umontreal.ca

Rubella Network
TREES VAN NUNEN
t.vannunen@kentalis.nl

Creative Arts Network

Technology network

IVANA MACOKATIĆMIJKJE WORM

ivanam@malidom.hrmworm@bartimeus.nl

European Deafblind Network (EDbN)

Usher Network

RICARD LOPEZ

EMMA BOSWELL

rlopez@edbn.org

Emma.Boswell@sense.org.uk

Family Network

Youth Network

MASSIEL REQUENA DE IRIARTESIMON ALLISON

massielrdeiriarte@gmail.com

simon.allison@sense.org.uk

DBI REVIEW | #69 | April 2023

71

Being and becoming
a member of DbI
Throughout this brand-new digital DbI Review you will surely notice: DeafblindInternational is THE point of connection in deafblindness worldwide.
This is our passion and this is also our vision. To connect more and more andmore. And to increase the impact we have for people with deafblindness
and their families. Which means for example growing exchange and learning from each other, identifying and promoting best practices, stimulating
research in the field or advocating for international awareness and recognition of deafblindness as a unique and distinct disability.
For all of that and more we need YOU as a member. Being or becoming amember: Please help us growing our impact and becoming indeed worldwide THE point of connection.
Being an individual member of DbI means• being a part of THE network in deafblindness and in

making a difference for people with deafblindness, theirfamilies, professionals, researchers and service organizations worldwide• belonging to the international “DbI family” and being intouch with members from all parts of the world• being very much invited to join one of DbI’s very active
thematic networks• being informed first-hand about news and develop-

ments in the field and before anyone else about upcoming possibilities to exchange and learn from each otheras in one of DbI’s conferences

Being a corporate member of DbI means means inaddition to that• cooperating with other specialized organizations

on an international level for awareness and recognition of deafblindness as a unique and distinct
disability, for inclusion, quality services, the needed
specialized competence of the professionals,
focused research and further improvements inassistive technology• learning from and with other specialized organizations for your own• having a chance to be directly involved in DbI’s

management and development as an elected member of the Board and/or of one of its committees• being able to publish in DbI’s digital magazine “DbI Review” • presenting your organization during DbI confer• having member discounts on DbI’s upcoming merchandise
ences in a booth provided free of charge
DbI is all about connecting, individual membership is therefore free of charge.
Corporate members are the foundation for the work of DbI, also with their financial membership contribution. That is their pride and that is why they play the key role in DbI’s direction
and management.
If you want to join us as a new member, just go to https://www.deafblindinternational.org/
about-us/become-a-member/ Anyway, being or becoming a member, we are enthusiastic
about your power. Together we will boost DbI’s impact for sure.
Mirko Baúr, Strategic Vice-President DbI, Chair ComCom