The Disability Community: organizing for voice, rights, equity and inclusion
by Dr. Kristen Liesch, co-CEO of Tidal Equality, with Andrea van Vugt, founder of Disability Pride Alberta
““I am a 35-year-old disabled woman. So, why don’t you bring me up when you talk about marginalized groups? Statistics Canada says one in five people are disabled. But when you talk about innovation, change, diversity, and aid, disability doesn’t come up. Not really. There are women’s rights, LBGTQ+ rights, Indigenous rights, and newcomer rights. All of these rights have been earned by ongoing hard work and are well deserved. But where is our place on your platform? You sell disability in your diversity workbooks, but we’re not invited to the table. And if we do get a seat at the table, it’s only for the photo op.”
Why we need to amplify the voices of disabled people
QUESTION: In your article, you give your reader a very personal glimpse into what the day-to-day means for you. As a reader, and as someone who has met you in person, I gather that your disability appears invisible from the outside. Invisible, that is, until it isn’t.
I’ve heard disability advocates explain how, when able-bodied folks think of “disability,” their conception necessarily includes the very visible, and iconic, person in a wheelchair.
Can you explain, from your perspective, why it’s important for the voices and experiences of disabled folks to be amplified?
First off, a large portion of Canada’s population is disabled. In fact, 22% of Canadians (15 years and over) identify as having a disability, and that rate increases with age, where that percentage is 38% of Canadians over 65. In a lot of ways, many folks aren’t disabled… until they are. So the concerns of the disabled community represent the concerns of a broad swathe of Canadians. However, we still see decisions about disability issues excluding the disability community, which is problematic, especially when serving that community involves listening to and learning from broad perspectives.
(Corporations seeking opportunities to appear anti-racist like…)
Serving us isn’t just about putting in an accessibility ramp and calling it a day. What we want to emphasize is, “Nothing about us, without us.” We need to be at the decision-making table whether it comes to public policy issues or product design. At the end of the day, there’s also a lot of opportunity and potential in including disabled folks; we’re innovative. We can see problems and solutions from more than one point of view. The potential for social, medical, technical advances and more are enormous, if disabled people take part. But, the fact is, since our voices are underrepresented, there’s a huge lack of awareness and education around what disability means and what it can look like. And where we see that gap, we also have the opportunity to raise awareness and empathy. One initiative doing both these things, is the JAM card by the NOW Group in Belfast. The JAM card is a physical (or digital) card that anyone can use to indicate they just need a second - they’re in a jam. It’s helpful for neurodiverse folks, individuals with autism, anyone who has a communication barrier or otherwise feels self-conscious about their ability to effectively communicate when engaging others.
Why “disability” is at the bottom of the priority list
QUESTION: You write about how you were told once that disabled people are at the bottom of the triangle of Canadian rights.
Can you explain a little bit about how this lack of prioritization is
(a) expressed in the world around us, in policy, in design, and so on?
(b) experienced in the daily life of people who are disabled?
(c) exacerbated during the COVID-19 pandemic?
Well, despite 1 in 5 having a disability, the issues disabled folks face don’t make for a “trendy” topic, and so there’s a lack of media attention, representation in pop culture, and general awareness. I mean, it’s not like we learn the history of disability in school. Just like the histories of other underrepresented and marginalized groups, this community has its own stories of murder, pain, initiative, innovation and change, yet we don’t talk about it.
The fight for the rights of disabled people has lagged far behind other social change and rights movements. In the States, the Americans with Disabilities Act was written in 1990.
In Canada, it took until 2019 for the Accessible Canada Act’s final reading to take place!
In some ways it’s a tricky identification to galvanize support for, given the broad range of disabilities.
As for the daily lived experiences of disabled folks, those are as diverse as the disabilities folks might have; there’s joy and adversity in disability. But what many of us experience is the personal pursuit of solutions to our own problems. People with disabilities are nothing if not agile.
The COVID-19 pandemic, though, has brought a deepening of existing challenges. Even in “normal” times, many disabled people face isolation, and now that isolation is magnified! Many disability community projects and social services have been put on hold, and virtual programming isn’t experienced the same way by everyone, not to mention not everyone has the resources for the tech it takes to be “plugged in.” I, for one, make use of public transportation and, these days, that puts me at greater risk of contracting the virus, and even when I can use public transportation options, routes have decreased in number, making travel more difficult.
What disability activism looks like
QUESTION:. I recently connected with the team at HeyNova. They work to ensure digital spaces are accessible to all from code up. I was really surprised to hear that, in Canada, accessibility standards for our digital spaces are not consistent - or consistently enforced. But in addition to that, I was told that disabled folks oftentimes don’t realize how accessible the digital world could be, and so they can’t effectively advocate for themselves. In other words, it’s like, for example, there’s the digital equivalent of a wheelchair ramp for a website, but folks with mobility challenges don’t know the ramp has been invented, and so they can’t demand that it be included in every digital space.
Can you tell me what disability activism looks like, and how more folks can get involved?
Two words: speak up!
Lived experience is the greatest form of data, and it grows empathy and inspires change. People share stories on our website about their experiences as disabled folks, and I invite others to read them for an opportunity to grow their empathy and understanding.
We need an intersectional approach
QUESTION: One of the big “learnings” from past movements for greater equality is that the fight must be intersectional and invite to the table and the cause all people who face discrimination, prejudice, and an unequal opportunity to achieve their full potential. But your article clearly expresses how you feel how the disability rights movement has been excluded from today’s broader equity, diversity and inclusion conversation.
Can you provide a tangible example?
I was sitting in a gathering with a group of high-profile investors. They were talking about the importance of investing in startups led by marginalized groups. They elaborated on what they meant by “marginalized,” but folks with disabilities weren’t brought up in that conversation.
Do you have any theories about why that is? (Please feel free to be candid. I invite you to share hard truths.)
Frankly, the conversation around disabilities is actually a whole lot of conversations. Discrimination and prejudice doesn’t always look the same from one disabled person to the next. Not only that, some folks aren’t interested in using the term “disabled” and prefer using “people-first” language, so, for example, saying “person with a disability.” But, for me, personally, that’s like saying I would be “normal” if it weren’t for my disability.
Can you describe how you see this “exclusion from the marginalized” impacting the pursuit of broader equality?
I wrote my blog post “Excluded from the Marginalized” based on my own experiences of being left out of conversations about underrepresented groups. At the end of the day, regardless of the word(s) we use to identify ourselves or the diversity of our experiences as disabled people, we need solidarity and intersectionality in a broader collective pursuit of equality hand-in-hand with others engaged in the same pursuit - women, people of colour, Indigenous folks, immigrants, the elderly, the LGBTQ community, and so on. What we’re all after is an equal opportunity to reach our full potential.
Can you describe how you see this “exclusion from the marginalized” impacting the pursuit of broader equality?
I wrote my blog post “Excluded from the Marginalized” based on my own experiences of being left out of conversations about underrepresented groups. At the end of the day, regardless of the word(s) we use to identify ourselves or the diversity of our experiences as disabled people, we need solidarity and intersectionality in a broader collective pursuit of equality hand-in-hand with others engaged in the same pursuit - women, people of colour, Indigenous folks, immigrants, the elderly, the LGBTQ community, and so on. What we’re all after is an equal opportunity to reach our full potential.
QUESTION:
Any final thoughts?
Let’s listen to, and learn from, each other - together, the disability community can have collective power!
Make sure whatever you create in this world - content, programs, systems, structures - is accessible and engaging for people with disabilities.
Become an ally to the disability community - my story is just one of the many stories out there, and chances are a lot more people around you (approximately 1 in 5) have similar stories.
Where can our readers reach you?
www.disabilitypridealberta.com
Email us: info@disabilitypridealberta.com
https://www.instagram.com/disabilityprideab/?hl=en
https://www.facebook.com/Disabilityprideab/
How can our readers support Disability Pride?
Let’s get people from the various disability communities connecting and creating with one another. Reach out to the leaders in your disability circle and ask them to create events and conversations among the other communities.
To the people creating and producing media: have representation by and for the disabled community in your projects.
If we’re talking business, disability can sell. In 2018, Nike signed Justin Gallegos, the first pro athlete with cerebral palsy. Money can talk, and with 1 in 5 people being disabled, let’s get disabled people in front of the world to get equal representation and innovative products.
Contact us to share your Disability Story, and follow us on social media.
*Andrea’s responses have been paraphrased, with approval. Andrea is also a member of the Tidal Equality Collaborative.
