The other day I was afforded an opportunity to vocally express my thoughts about pandemic response and the protest downtown. Doing so was quite difficult because despite having written on those topics extensively, it’s different to have auditory words take form. The word “difficult” is certainly prominent, and is the only word I could think of when I was speaking to describe how I was feeling. I suppose “frustration” is another, with “upset” and “resigned” being present as well. People know me based on what they see, they don’t know what’s going on “under the hood”. There’s an unawareness of how difficult it is to communicate effectively, both verbal and written. And there’s a general unawareness of how the actions and words of others impact folks like me.
Some folks may have been caught by surprise with some of my written content over the years, but things have been progressing in this direction for some time now. It began when my immunological disorder manifested and I had to cover my whole body – the removal of my white complexion from people’s eyes and with the stereotypes that people held still remaining was, well, eye opening. I began to not necessarily speak out more, but began to understand the perspective of marginalized communities and what they faced.
From there things progressed with my back getting worse, at times with requiring a cane to move around. This too was eye opening, with so much of the world geared towards mobility and “move quickly, efficiently”. It forced me (and still forces me) to limit myself, to slow myself down, which is something the world often refuses to accommodate. This opened my eyes to that the world simply does not accommodate certain people, and society will refuse to be accessible.
And then, finally, the dual diagnosis. Reliving every moment I could remember, now with the self-awareness of *why* I acted and reacted in a certain way. Why I had struggles in several areas. What exactly the cause and effect was. Hindsight is a hell of a thing, and in this case it was some thirty eight years of unpacking.
Now, I don’t claim to speak for all disabled people. But when I speak of ableism, it’s something that impacts all of the disabled, whether they are aware of it or not. Again, I spent years thinking I was “normal”, it turns out that I wasn’t. And there’s some disabled people who have simply been run down by society, or even convinced by society that “oh, things aren’t that bad”.
I am here to tell you, once again, that systemic *and* acute ableism exists and impacts all disabled people.
My first aware exposure to what I’m up against was heading to an Employment Ontario/Service Canada workshop when I was unemployed. The materials were not available to review before or after, the session was not recorded, the slides filled with inaccessible materials. The government programs available to me for assistance was “ODSP, that’s it”. When I wanted to give feedback, I was given a pencil and a piece of paper. What was most telling was during the presentation I asked “should I disclose using employment equity that I’m disabled?” The answer was a firm “no”, it would be held against me, they said.
I’m going to say this again; the government employees told me not to list I’m disabled in the section that is *protected by the government* because it would be held against me. But if I didn’t disclose it and a employer found out, they could terminate/fire me without cause during the probationary period. One by one moments like these began piling up.
And then, COVID.
From the start of the pandemic I saw and heard “pre-existing conditions”. “It’s ‘only’ people with pre-existing conditions who need to worry about COVID” – with people being unaware that several disabilities count as being “pre-existing conditions”. More and more news reports about how the disabled have been impacted in an outsized way.
Now people fight for their “normal”. And understand why, I do. I get it’s been a long two years. The concept and construct of not having “normal” is something that I cannot explain well. I’ve tried writing, but I do not think people fully grasp the sheer emotion behind it. I’ve tried vocalizing, and while the emotion certainly becomes across, my words betray me by not leaving my lips.
It’s difficult. Especially in the context of temporary restrictions. Which they are, it’s temporary. The other day someone told me “two years isn’t temporary” and I responded without thinking “forty. Try forty”.
All the while, people preach unity. And, to be clear, I’m generally fine with unity. I’ve taken steps to try to be a “bridge builder” and hold dialogues with people. What has happened though, is people use the word “unity” as a club to dismiss the “divisive” folks who have something they wish to share. The disabled, Indigenous , Black people, other people of color – threats to “unity”, all.
In this specific context, “unity” is a form of suppression. It’s telling people to “keep quiet” so things can return to “normal”, so they may enjoy their comfort and leisure. Social lives being disrupted? You’ll have you chance, some of us don’t – or find navigating social situations incredibly difficult. You lost your job? I’ve lost work due to being disabled, and haven’t been hired due to being disabled. The degree of difficulty in so many “everyday” or “life” activities is exponential.
Unity, in this case, is erasure.
I try to explain this, and it doesn’t click with several people. Even when I tried to vocalize it on a Zoom call, when people could see my pain, most reverted right back to *their* normal. When I said “don’t forget about us”, one person asked “what do you mean?” while another asked what “privilege” meant. When those were answered, the conversation again reverted back to others and “their normal” being restored.
It’s fascinating to me who makes the effort. When I told a volunteer at the church about my diagnosis, she (Renee) said “we’ve always known” – and the kids treated me no different. On the other end of the age bracket, my mom has been tireless with her efforts throughout my childhood to help me get what I needed to succeed – and now we are both adults, she is tireless in her efforts to understand what makes me *me*. It’s arguably the greatest gift my mom has ever given me, and I wish more people could follow her example. And, obviously my beloved wife, who journeys with me and is the kindest and most understanding person I have ever known. Our boy takes after her, and my life is the richer with those two being present every day. My fraters, in particular McHale and Jeremy, both always watching out for me and making it a point to learn and listen. So much empathy from people in my life. A lot of empathy. And patience.
Others….do not come close to approaching that. I get asked “why do you always mention being disabled?” I get told “you’re causing division”. I get told all manner of things that are 1designed to have me remain quiet and not express myself. Which is enraging because of how hard I have worked to *find* ways to express myself (which is a longform post all of it’s own).
The “why do you always mention being disabled?” (or the closely related “why so much disability content”) deserves it’s own response; it’s because it is a core part of my identity. If I wasn’t autistic I wouldn’t be *me*, because it’s neurological. You remove that, you remove me.
The reducible me.
At some point restrictions and mandates will end. At some point people will go about their daily lives, free from the “tyranny” of wearing a piece of fabric over their face or having to show a QR code to sit and eat at a restaurant. My life as a disabled man will remain, with people too busy with their “normal” to think about us.
There’s a few things I’ll remember though. I’ll remember the incomprehensible comparisons people made, such as comparing restrictions/mandates to the Shoah. I’ll remember who said nothing when I brought up how pandemic response is impacting the disabled. I’ll remember those who refused to consider “the least of our brothers and sisters”. I’ll remember those who sought to suppress our voices in the name of “unity”. I’ll remember those who said “some of my best friends are disabled!” as a means to try and invalidate the struggles the disabled universally face.
And yet, despite remembering all of these things, despite everything I wrote about; the expectation will remain that we are to be kind and charitable. That too will be difficult, for a reason that I have been quite vocal about for some time now. Most of you who have read this far already know what is going to be said.
We’re not going to forget.