Nothing about us without us is really a thing…
…and other things I learned about how to be a better ally for accessibility justice.
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On a hot summer day two years ago, I walked through the TTC station gates when I noticed an older, frail-looking gentleman at the top of the stairs that led down to the subway platform. The man was visibly limping as he pushed a heavy cart carrying his belongings. I offered to pick up his cart, and when he nodded, I carried the cart down two flights of stairs as he held the guardrail and stepped gingerly down the stairs. At the bottom of the stairs, he smiled hurriedly, thanked me quietly, and slowly rolled the cart behind him on the subway platform, where he waited until the subway arrived. As I walked away, it began to dawn on me that I had just watched a man drag his bulky cart down a flight of stairs to underground level because this subway stop was devoid of functional elevators.
Buoyed by the man’s unpleasant experience and my own wandering mind, I went home to craft a public statement on what I assumed was the most logical solution to this man’s problem: we need functional elevators in all subway stations. It wasn’t a particularly original thought. Local activists have been warning about how the lack of elevators is a huge problem long before my ephiphany. I figured I was safe to propose this seemingly obvious solution. I wrote the original draft of the public statement in fifteen minutes. Before I clicked send on the e-mail to the group, I forwarded the note to my friend Shaun.
Shaun is an able-bodied, middle-aged white man, a licensed physiotherapist, an accessibility justice academic and a conscience member of transit organizing groups in Toronto. He speaks three languages fluently and authoritatively, and he splits his time between his native Canada and his adopted home of Zambia. Shaun is nothing if not a study in venerable contrasts: he assigns specific end times to our coffee chats in order to stay on schedule, but he also sends meticulously drafted treatises on the optimal service level for a remote bus route operating in off-peak hours. But mostly, Shaun is just the best ally I’ve ever met.
Within a few hours of receiving my email, Shaun had replied with a mix of excitement and caution. He told me that he would be delighted to help me, but he attached one urgent condition to his offer:
“The idea of ‘nothing about us without us’ is really a thing and although I see the importance of making a statement, I am not willing to engage unless people who identify as having a disability are invited to contribute, or even lead if they see it as appropriate to do so.”
I told Shaun I’d be happy to let those affected take the lead on writing the position statement, or if it was deemed appropriate, I would volunteer to write the position statement myself and then ask members of the affected community to give me feedback. But I remained skeptical that this exercise was anything more than a fishing expedition. We know the problem, I thought. In any solution implementation, there are practical tradeoffs between speed and quality. At this point, more consultation isn’t going to change the basic laws of physics around how our current subway stations are designed. There are no other technologies that meaningfully address barriers like elevators will. It’s true that speaking with affected people will lend credibility to my statement. But it won’t materially change the content of the statement because I have done the research.
What can affected people teach me that I don’t already know?
Shaun spent the next several weeks preparing me for how to speak to people who were living with a range of differing abilities and experiences related to sight, sound, physical and mental health. He reached out to some friends for early feedback on the position statement, and the first wave of feedback provided an early surprise: the statement was a good start, but only a start. There were gaping holes in how accessibility was presented as a problem, and how elevators were assumed to be the solution. After some discussion via email, it was decided that our small working group would hit pause on presenting the statement to a larger group until we received more feedback.
In the weeks that followed, I learned that many people had been organizing on accessibility and transit for the last twenty-five years. I learned about how to navigate messy politics within dozens of accessibility communities who sometimes didn’t align neatly on inputs, process or end goals. Shaun led me through challenging, untidy, hard questions that re-framed my thinking: Who gets to define disabled? How do you position yourself on the spectrum of ability to disability? How do you situate disability on a range of other intersections related to identity? How does advocating for comfortable transit for able-bodied people impose ableism? What is the difference between fixing a problem that affects the most people and fixing a problem that affects the most marginalized people? What process do you follow when these problems are different? In this context, are elevators still the best investment? I thought my extensive understanding of transit meant I had all of the answers. By speaking with affected people I realized I wasn’t really asking the right questions.
I also wasn’t speaking in an accessible, common language. When I wrote the first draft of the position statement, I wrote often about “disability”. Shaun taught me how to use people-first language that valued humanity over disability. This can involve usage of powerful re-framing techniques that transform “accessible” into “barrier-free” and usage of nuanced language that makes key distinctions between “accommodation” and “accessibility”. It can also involve usage of acronyms like PWD, an abbreviation for Person With Disability (though even this terminology can be contentious). Shaun was also an avid proponent of eliminating ableist language. He pointed me to writings that stressed that accessibility is a practice, not a statement, suggesting my entire starting point of writing a statement as a form of allyship and protest may have been misguided. He was explicit about stigmatizing terminology that disenfranchised differing abilities related to sight, sound and physical mobility. At every step, he insisted on an approach that involved active, sustained, difficult effort to use language that was familiar to people who spoke about challenges in accessibility. The end result was that I was compelled to speak to and write about affected people on their terms. It also forced me to relinquish control over my ideas, because I could no longer claim full ownership over the means by which I became an expert.
When we finally released the statement to the larger organizing group, and then to the public, the collective accessibility statement we made was better sourced, better researched, better written and more reflective of the community’s needs and desires. But even more importantly, the statement became a pre-text for more conversations. Through Shaun, I learned a ton of important lessons that I try to carry with me in all walks of life:
- Good allyship starts by acknowledging that you are human, you are flawed and you are unable to arrive at the solution on your own. It requires you to pose many questions, in good faith, to many people, in all walks of life, who are negatively affected by the thing you are discussing. It requires an emphasis on practices over outcomes.
- Allyship requires purposeful, tangible, meaningful engagement with, and involvement of, affected people. It can only be done correctly if it centres on an inclusive language that re-shapes, re-frames and re-organizes ideas so they make sense to audiences of different backgrounds.
- Using inclusive language is a form of community building — and any efforts to speak in an inaccessible language must be viewed with immediate suspicion and derision.
- For someone like me who is privileged, hyper-educated and meets traditional definitions of smart, allyship is difficult and humbling. It may seem paradoxical, but difficult and humbling are excellent starting points. Good allyship is uncomfortable for those who believe they are experts, because good allyship only begins once you recognize you are not the authority.
In the two years since the public statement was written, the TTC still hasn’t announced any forward progress towards the construction of elevators in all subway stations. As a result, the transit agency continues to fail compliance requirements mandated by the Accessibility Ontario Disability Act (AODA). The matter currently sits on the desks of the TTC, who seem content to wait until legal action is initiated by the Province against the City and the TTC. The matter will be likely settled only when political pressure forces politicians to act. The alliances formed and strengthened by activists, citizen groups and allies like Shaun are our best hope to create the political pressure needed to change the system and win funding for elevators in all subway stations. When they win, they will have done it by avoiding cheap political shortcuts, and sticking to the hard work of building a credible, sustained, long-term movement that meaningfully places those affected by indecision and neglect at the heart of how decisive change should occur. They will continue by chipping away at a core ethic: nothing about us without us is really a thing.
We should all be so lucky to take allyship as seriously as Shaun does.
