By Yona Lunsky
International Day of Persons with Disabilities (IDPD) is celebrated on December 3rd each year. The annual observance of this day was proclaimed in 1992 by the United Nations General Assembly with the aim of promoting an understanding of disability issues and mobilizing support for the dignity, rights, and well-being of persons with disabilities.
This year the overarching theme of IDPD is “Transformative solutions for inclusive development: the role of innovation in fueling an accessible and equitable world“. Within this theme, there is a focus on three key areas: reducing inequality, employment, and sport as an exemplar case.
The need to think and act in a transformative manner has never been clearer to me than in these past three years. Throughout the COVID-19 pandemic, we have witnessed how exclusionary and ableist ways of thinking and behaving have resulted in poorer health and premature death, especially for vulnerable and marginalized people.
How do we create a more accessible and equitable world, one in which we all benefit from accessible spaces, accessible communication, and accessible services and supports? We can’t just keep doing more of the “same old, same old”. We need to innovate and the IDPD gives us a way forward with solutions that can transform the way we think and act.
How do we get to these solutions? This is the part that is not written down but needs to be said loud and clear for the people who may be big innovators but who are not disabled themselves. We get to these solutions by working together with those who are disabled; the people who face barriers and are excluded in key areas of life because things are not accessible or equitable. They know what they need; they know better than anyone what works and what doesn’t work, and they have incredible ideas. But here is the kicker - our inaccessible world doesn’t give them equitable opportunities to be heard and to act when it comes to designing transformative solutions.
So, the last part of my blog illustrates different ways over the last year our team at the Azrieli Adult Neurodevelopmental Centre has been focusing on the three key areas highlighted in this year’s IDPD theme.
1. Innovation for disability inclusive development in reducing inequality
When it comes to reducing inequality in Ontario and throughout Canada, we need to make sure that the services and supports we provide are disability inclusive. That is a pretty big goal so I want to focus on some small things we are doing in this regard when it comes to health and health care.
We are transforming how we communicate critical information about essential health care for people with developmental disabilities and adapting health care accordingly. As Canada rolled out its COVID-19 vaccination program, we saw that people with IDD were not identified as a priority group. We worked together with disabled people and their allies – health providers, families, and friends – to advocate for accessible vaccines and develop resources to help people with IDD and their families navigate the process. Some of this work was transformative. How? By working together to identify what wasn’t working and what would work instead.
We are creating and building educational opportunities. If we really want to teach people with disabilities the information they want and need in a way that they understand, they need to be part of the team designing and doing that instruction. At the Azrieli Centre, people with disabilities are contributing to easy read resources and skill-building in areas such as mindfulness, coping during COVID, and understanding and adapting to a new diagnosis of autism in adulthood.
Also, through our ECHO program, they are teaching health and social care providers how to better meet the mental health needs of people with disabilities. In this situation, disabled people are members of the hub team, instructing non-disabled people on how to improve the mental health of the people with disabilities that they support.
I am hopeful that we are slowly moving the dial, transforming how health services are delivered by embedding disability-informed health care tools into practice. However, we have a long way to go. I think we lost some of the progress we were making around health care delivery because of the pandemic. There is this sense that now is not the time to invest in accessibility innovations because we have bigger fish to fry. But this is exactly the right time!
We have been learning a lot about how shifts in health care delivery have impacted people with developmental disabilities, and we are now studying how these shifts are continuing to develop. For example, for some people, virtual care has been incredible, and for others, it continues to be a challenge. We need flexible solutions that are disability-informed, and people need to understand that accommodations are not simply “nice to have” but rather a must-have.
2. Innovation for disability inclusive development in employment
This year, the Azrieli Centre has expanded the number of people with lived experience in paid advisory positions to work with us and the CAMH community. In our process of onboarding neurodivergent people as well as staff, trainees and advisors more generally, we are learning that there is lots more work to be done to make the process accessible to all. I imagine this is an issue in other hospitals and not just ours. We all need to work with the people who require accommodations to figure out just what those accommodations need to be. We would like to hire more people in paid positions but the current regulations for people who require disability income support are complicated when it comes to earning additional income. Some of that is changing next year in Ontario (a welcome change) but there is more that can be done.
I think we are seeing the most success when it comes to disability inclusive employment when we have the proper supports in place to make sure that every person working with us can have the accommodations and support they need. This takes funding and skilled people within the team who can provide that support, and it requires that we foster an environment that is trusting enough that we can try things, make mistakes and learn from them so that we do things differently the next time.
3. Innovation for disability inclusive development: sport as an exemplar case
At first, I thought that maybe this area didn’t apply to our Centre – after all, we are not a sports organization. Then I was reminded by members of our team that we did do something this year that was disability inclusive when it comes to sport. As part of a CIHR-funded program to address the emerging health needs of people with developmental disabilities during the pandemic, we added a fitness component to each of our education programs, such as stretching and dancing. Laura St. John, a post-doctoral fellow at the Centre, made a good attempt with her first videos, building off her many years of experience working with Special Olympics.
Recognizing that there might be barriers to participation for people with mobility issues, she made a modification to the videos by adding a picture-in-picture, showing simultaneously how to do the exercises from a standing or seated position. This meant that everyone in the program could participate with us. Even people who could not hear the music could still enjoy following along with the movements. Then, we had a participant take the course who was visually impaired and could not see the movements at all. So the videos were updated again, this time with more detailed verbal instructions from Laura, with the music in the background.
These small changes came about from innovating together and building a safe space to receive feedback when we did something that was not disability inclusive, so we could try out an alternative that worked better. No one is going to become an Olympic athlete from our dance series! But many people have told us they love the dance videos and continue to do them long after the end of the course. This experience has reminded us about how to build these types of resources better going forward.
IDPD comes one day each year. Around the world, we have the opportunity to celebrate people with disabilities, recognize steps that have been taken to improve accessibility and identify what else needs to be done. However, the work to be done is year-round, and it is as important as ever. I am grateful to the people I get to work with and learn from in my organization. Who are you working with and learning from this year and what is one small step you can take to improve accessibility?
Thank you for taking the time to read some of my thoughts. I hope you can take the opportunity today to read and learn from people with disabilities about why IDPD is so important and make some commitments for the year ahead, big or small, to work together toward transformative solutions for inclusive development.