Last year, during a challenging experience of having to trial-and-error solutions to disability access while staying somewhere overnight, I realised I often exhibit an attitude I’ve started calling Apologetic Disability. (When I talked this afterwards over with my spousefriend, who is a lifelong disability activist, she said that most disabled folks perform Apologetic Disability some of the time. Institutionalised ableism makes sure of it.)
Apologetic Disability makes an entrance when we need accommodation but our environment seems unprepared to offer it; folks are tired out from arranging our accommodation(s) already, yet we still need more; we’ve brought up our disability(ies) several times that day already; our disability makes us different in a way that other people don’t understand or are inconvenienced by; we are offered an accommodation, though not the one we asked for; etc.
So we minimise what we need; we say “it’ll be fine” when we’re not sure that it won’t injure or damage us; we don’t ask, or we ask in a way that suggests accommodation is a big favour and not a right; we don’t correct folks when they misunderstand what we need; we allow our disability singularities (fatigue, needing a lot of stuff to travel with us, brain fog or very unclear speech when our bodies are failing, inability to carry stuff or handwrite or hold on to a strap/pole on the bus, drunk-looking balance, not being able to handle vibration, having a narrow range of safe-to-our-bodies temperatures, needing trigger warnings, big startle responses to loud noises or folks coming up behind us, wearing a monitor, needing much sleep, etc.) to be mocked or be the object of teasing or disapproval; we overexplain those singularities or the mechanics of our disabilities.
Having realised all this (and having felt a little foolish that I hadn’t earlier, that I’d just gone into Apologetic Disability behaviour on autopilot), I experienced a seismic shift inside me. The first step in changing a problem is becoming aware of when it is manifesting. I have now become much more consistently aware of when I fall into AD. And I’m consistently speaking up and setting boundaries with people (whether strangers, acquaintances, or loved ones) who mock me around my disability singularities. (And feeling sad at realising just how often people do that, and how often they don’t think their behaviour is problematic.) I’ve started making peace with the fact that I cannot control the meaning people make of the manifestations of my disabilities and that if they exhibit disapproval, disappointment, or disdain, I don’t have to take it on and act guilty and/or apologetic about it. I’ve started asking myself first: “What do I need?”, as opposed to “What do folks expect me of me, and can I deliver that, even if it hurts me a little/a lot?” I’ve started practicing saying what I need, with calm clarity and without apology. Even when I get met with pushback, derision, or confusion.
“I’ve started making peace with the fact that I cannot control the meaning people make of the manifestations of my disabilities and that if they exhibit disapproval, disappointment, or disdain, I don’t have to take it on and act guilty and/or apologetic about it.”
I’ve still got a ways to go; e.g. asking the folks sitting in the priority seats on the TTC for a seat, during rush hour, when I do not have a mobility device with me, is still quite challenging. But my life has started realigning along the “this is my normal” axis, and I am moving away from being apologetic about my body and from forgoing at least attempting to meet my needs.
Goodness, does that realignment ever change the landscape. And it made me have this daydream over and over: Imagine if all of us disabled folks were to put ourselves first, and in the centre of our understanding of the world: who we are & what our bodies do is normal; it is others who differ from us. (And of course I’m not suggesting stigmatising or shaming others for how they differ from us. I’m suggesting taking on the perspective: we are our own normal. We understand our way of being, and our needs, best. And we passionately believe that they matter.) Imagine if we did that all the time? What would that mean in terms of asking for access, expecting respect, insisting on clear communication, taking ourselves out of unsafe situations, asking for help and/or allyship, shutting down prying questions or demands that we explain our ‘imperfect’ bodies? I think it would be nothing less than revolution: negotiating the world on our own terms, deeply valuing our fabulous, unique selves, efficiently using our energy to take care of ourselves rather than wasting it on handling others’ ableist messes.
And yes, for so many of us there are obstacles to consistently doing that. Many of us live in situations (nursing homes, with unsupportive family members, psych hospitals, neglectful group homes, etc.) where what we want isn’t always (or almost ever) listened to. Many of us have communication problems based in how the world interacts with our disabilities (lack of wide-spread knowledge of ASL and lack of interpretation, lack of patience with folks whose speech is unclear or who communicate via symbol or alphabet boards, sheer unwillingness to find alternate ways of communicating with us because we are not valued, etc.), or not enough social power or support to gain the personal tools to able to do this. But — imagine us growing towards that goal anyway? Growing in internal strength, in conviction of our normalcy and beauty and giving zero fucks to others’ opinions of our bodies, growing in self-assurance and fierceness? I’m ready for that revolution.