"They feel sorry for us..."

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“Why do people think we need more help because Aidan doesn’t speak?”

It’s all Autism. This is something that we tell ourselves. This is something that we tell others. This is at the heart of Neuro-inclusive movements. That disability is disability. Doesn’t matter the varying degrees or what part of a spectrum others feel you to be, or even where you feel yourself to be, it’s all disability. And this isn’t wrong. But it doesn’t feel all the way right either.

Let’s unpack some things for a bit.

Yes, we should treat disability as something that doesn’t need a specific point an individual has to hit to be considered “disabled enough” to be considered disabled. But let’s also not forget that some people experience disability in ways that you nor I ever will. There are those who do “look Autistic.” And this has very little to do with how they physically look and more to do with how they present themselves to the world.

For myself and my youngest, most would have to spend a considerable amount of time with us before they even suspected that we might be disabled. But for my oldest, every single room he enters...they know. They feel it. They have “othered” him before they even get to know him. There is no space he goes where Autism doesn’t overwhelm his presence. The only thing they see before “different,” “odd,” “weird,” “scary” is his Blackness (and “scary” is most often tied with this Blackness). He wears his Autism like skin. He doesn’t mask.

And the world knows. Or thinks it knows.

What they don’t know, they suspect. And how they respond to him is based on what they perceive him to be. He is different. They don’t always know in what way; they just know he lies outside of what they consider to be “normal.”

There’s no denying this. I sugarcoat nothing. Too many of y’all make absolutely no room for impairment within your work and it leaves those like my son out and alone. Rectify that shit or remove yourself from this work. It’s nice to recognize that disability is disability but you’re doing a disservice to those who don’t experience disability as a simple matter of a difference in thinking.

That’s a post for another day.

This is about the quote I started with. It was spoken by my son, Jojo. We were at a grocery store, and someone asked if we needed help. It was one of those stores where you bag your own groceries. Aidan sat in his wheelchair with his camera while his brother and I loaded the bags with our items. A woman asks if we needed help. I caught her watching us for some time before she spoke.

I politely told her that we were okay. And thanked her for the offer. Once we finished, we headed towards the door. She asked if she could talk to Aidan. I told her she could. She said, “what’s his name?” I told her his name. She asked him how he was doing and that she liked his camera. Jojo told her a few moments later that his brother doesn’t speak. She said that she “figured that.” He then asked her why she talked to him like a baby. She mentioned she didn’t realize that she was.

She was.

“Just talk normal (for him this meant speak as she always does), he hears you, he just doesn’t speak and sometimes he wants to talk to you and sometimes he doesn’t,” Jojo continues on. “Talk” for Aidan is using his device.

She apologized and said that she understood that she spoke to him like a baby and that she will not make that mistake again, and that she was thankful that he corrected her.

Jojo did his signature “bye for now.” And we left. But I could see his shoulders were so heavy. He was tired. And I didn’t realize how much so. In the past couple of months he has seen our meals being paid for, people buying us things at various stores, or just flat out giving us stuff...because they see Aidan. Because he represents something so...different to them. But he isn’t just different to them. He’s considered more difficult to them.

Jojo said, “they feel sorry for us.” It’s hard to gauge his emotional state at times, this was no different. He said it so flatly. I didn’t respond. I was doing my own thinking. Eventually I asked in the car how that made him feel. He just shrugged his shoulders and said, “he doesn’t speak and he makes noises, they feel sorry for us, and they buy us things and help us out.”

“That’s such a hard thing to process,” I tell him.

He says, barely louder than a whisper, “he’s not that hard to care for. He just doesn’t talk and makes noises. You just gotta help him out with more with some things, but he’s good”

Then he turned away from me and cut on his iPad to draw some pictures.

He’s 12 (at the time this occurred), and he can tell that not only does his brother experience Autism in a vastly different way than he does, but he can tell that the world sees this. He knows the world sees his brother as “severe.” It always has.

But he also sees his brother. His brother who is his friend, who loves so many of the things he loves, and just needs a little more help accessing those things. My 12-year-old can see the differences in not only how his Autism is from his brother’s but also in how the world chooses to treat them because of it.

So, how is it so difficult for those within this community to recognize this? And create a body of work that addresses this?

This post was about a lot because I am feeling a lot right now. I cried a little writing it. It’s about this community’s advocacy problems. It’s about the world pitying us under the guise of assisting us. It’s about so much. And I didn’t have it in me to break it apart.

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Note: I wrote this last year. These kinds of feelings and the behaviors that induce them has not slowed down in the time I penned this piece. And I am just as overwhelmed by all of it as I was then. I don’t imagine it will get any better. Part of me hopes it does.