There’s stuff we disabled folks don’t publicly discuss, sometimes because of shame or fear. We’re more likely to publicly express our anger (because it can feel empowering) than our sadness (because it can cause pity). I’m trying to move from public anger to public sadness. It’s harder to express and it’s harder to witness. It’s harder to hold space for feelings of despair, isolation, and longing, not just for others, but also for ourselves.
I’ve been trying to write about my personal current experiences of despair, isolation, and longing, and every time I try I defensively throw up a writer’s block. When I was younger, I had no qualms about writing this stuff publicly, but I do now. I’ve changed. The internet has changed. Disability awareness, culture, and justice are coming onto more nondisabled folks’ radar than ever before.
These days, I feel like there’s more pressure to perform disability (a la Petra Kuppers) on the internet in a way that makes it/us/our experiences more palatable to nondisabled folks. There’s a greater emphasis on relatable anecdotes, on sharing tiny bites of our lives on small plates — easier to digest in morsels. Don’t overwhelm the nondisabled with what may be a disastrous seven course meal of painfully hard-to-swallow nuggets of uncomfortable truth. But relatable anecdotes are a tactic used by centrists to get everyone to play nicely… and I’ve never been a centrist about anything, let alone (in)justice. So why is it so hard for me to put my words out into the world?
Hi, I’m nearly 37; an 8th grade dropout; physically, emotionally, and cognitively disabled; trapped in our culture’s interweaving systems of oppression. (I’m also white and have learned how to be resourceful, which are two privileges that I have immensely benefited from.)
Despair, isolation, and longing are definitely prevalent in my generation and those younger — I acknowledge this. But, I also want to acknowledge that poverty and degenerative disability can make these conditions a hell of a lot worse.
We, as disabled people with these experiences, are not talking about those feelings publicly. We’re talking about individual injustices (very important), systemic discrimination (same), and rampant ableism (ditto), but other than rage we’re not talking about how they make us feel. We’re not talking about the consequences of those feelings. We’re not talking about the (presumably) millions of us who go silent and disappear from public life because of these conditions.
Those of us who become “shut-ins” from the overwhelming suffocation that can happen? We’re rarely acknowledged because we are often considered to be willing participants in our isolation. It’s different from being institutionalized against our will, from being abandoned in nursing homes. We “choose” to withdraw because we can’t handle it. But, I don’t recall making these choices: to be nearly home bound, to be nearly bed bound, to be extremely poor, to be out of options, to be forgotten by friends and colleagues who grew tired of waiting for me to “get better.”
I feel despair at my isolation and I long for my less-disabled past. These are things that aren’t wholly acceptable to discuss, that are shunned in public. But, I’m tired of not discussing them. I’m weary of trying to maintain the facade of my conditions being less disabling than they actually are. I’m frustrated by the internalized ableism I feel that has driven me to hide from disabled and nondisabled society due to my inability to perform an acceptable presentation of my abilities and disabilities. I’m trying to promise myself that I’m not going to hide anymore. I’m trying to give myself permission to put words to what I’m experiencing because I know I’m not alone in these experiences: I know there are others.
Even if I can’t quite bring myself to write about this, please know that it exists. And if you already know that it exists because you’re living it yourself, remember that you are not alone. I’m here with you, sharing these experiences. I’ve felt myself slip through the cracks of the support systems, the friend groups — all of it. I’m here, on the other side of community, isolated, shut-in and longing to get out, despairing. Like you, I’m here.
Still struggling to give myself permission to write about it, but maybe this is a good start.
