While taking a break from writing about that horrid autism parent meeting, I realized the other day that it took me until my 99th blog post here to use the word “disabled” or “disability” – so that’s been on my mind and there’s clearly some stuff to unpack there..

To begin with, I’m not one who denies that being Autistic is a disability. I know that many of us don’t consider it a disability, but I do consider it to be one. It’s a disability in my life and in the lives of many of my friends. I don’t find that view to be incompatible with the Neurodiversity paradigm either. I am a valuable human variation of normal and disabled. Both at the same time. Not mutually exclusive!

Now, interestingly enough, I certainly haven’t shied away from the terms “disabled” and “disability” in my personal thinking about being Autistic. One of the things that really shook the foundation of my worldview when I was diagnosed last year was the fact that I grew up disabled, but somehow didn’t know that I was disabled.

That question was on my mind very frequently in the months post-diagnosis: How could I have grown up not knowing I was disabled?

Looking back I see indications of subconscious knowing. I automatically isolated myself socially by hiding in books and reading every chance I got, so I knew there was something going on. I was different & couldn’t handle the social aspects of life at all. When, as a child, I imagined myself as someone who was liked by others at school, I invariably gave myself a visible disability in my imagination. Every time. It was as if I thought that if people could just see that I was different and that I had reasons for struggling, it would be okay. They’d see and accept me and I’d be fine.

That isn’t something I’ve really told people before because it still feels horribly offensive to me that I imagined those things. What sort of child would imagine that they were visibly disabled? And have it be a positive thing in their imagination?

Over the years that was simply one more example (to me) of my inherent toxicity towards myself and others.

But Sonia Boue puts it so nicely in this post, the desire for something visible to set us apart:

Ridiculously, I walk home quite earnestly desirous of an extra leg sprouting from the top of my head. So that you might see me and know my difference without ingrained assumption.

Why did it take me until post 99 to call myself disabled in this blog?

I honestly have no idea.

Putting things into writing helps make them real to me. I put being disabled into writing pretty early on in my evaluation process, but not publicly on this blog. Not until I’d already published 98 other blog posts.

This has caused some confusion among a few people I know. They couldn’t understand how neurodiversity was compatible with disability. How could there be both? How could both be true? How could I accept the disability label while writing about being so thankful to find out that I’m Autistic?

Being Autistic and recognizing that as a disability doesn’t make me broken or see myself as broken, even though it’s certainly a disadvantage in many practical ways. I’m trying not to see myself as inherently flawed any longer. That’s a large part of my past and internalized ableism is a very real thing, but I’m me and that’s okay.

After giving it a great deal of thought and research I also, and this is less popular I think, believe that being Autistic would be a disability even if our current society was quite supportive. Yes, a supportive society would go a long way towards mitigating the effects, but we’d still have different brain wiring than the majority and that would still cause us to functionally be disabled.

Perhaps in an Autistic-majority world we wouldn’t be disabled, but that’s not likely to become reality anytime soon, despite “scare” headlines to the contrary about how our “numbers are rising.”

But really, the biggest thing to me is that being disabled isn’t a judgment call about our value. “Disabled” isn’t a dirty word any more than “Autistic” is and I don’t want there to be any uncertainty about where I stand on this issue.