155. Turning That Stone Over

“Turning That Stone Over”

Just out of curiosity, I have been compiling a list of incidences of unexamined ableism that occur around us as we live our lives as an autism family. I don’t mean egregious violations such as the bullying, stares, comments, and exclusion that are stultifyingly commonplace, but the kind that either a) arise when someone is talking or acting, and reveal how they have not given much thought to the ableism we are all capable of; or b) seem to appeal to us to praise efforts at disability friendliness, but are actually aiding in fostering a ‘separate but equal’ universe for the disabled.

Now I don’t really mind if people think I am nitpicking, but I am also not going to stop. There is a lot of power in consistent speaking up against whatever is oppressing us, and we can all see why it is easier on society if we never use that power. Throwaway comments are a glimpse into how the individual and the collective not only hinder progress, but also how they throw the burden of coping back onto the marginalized. “Oh, I don’t think there’s anything wrong with what I said, but why don’t you practice more self care.” “You expect too much, and are not grateful for the tolerance I am showing.” The bar for engagement is set so low, it often thuds to the floor and rolls around gratingly.

We took A to a medical appointment, and the staff member who saw him was telling us to watch out for some potential reactions because of “autistic people feeling less pain.” I really cannot tell you how sick I am of hearing that. And why does a medical professional believe such dangerous tripe.

Now even if she was trying to caution us not to miss the signs of pain, but it came out sounding weird, I find it sad that she would not know by now that all she has to do is ask him, “Does it hurt?” He would answer. Just, you know, treat him as the social person he is. He’s brimming with self regard these days, and a wish to be known, and would love to be spoken to, not about.

Also, presume competence. In him and us. We’ve all been doing this for a long time, and we know a fair bit about how to read one another. Plus, even when we cannot figure things out, we’ll get there eventually. Because what’s the alternative…

Our loved ones are not bionic, or subhuman. Of course they feel pain. But they may not react openly to it in ways we would, mostly because they learn that people have trouble communicating with them. If I was nonverbal and had few ways to show what caused me pain, I would temper my emotional expression because it would only cause consternation, and no resolution. I sometimes exclaim over a scratch on A’s arm or leg, and he indicates that he would like me to kiss it or put some kind of balm on it, and he shows obvious appreciation and amusement at how I fuss over him, but I almost never get answers as to what actually happened, and he rarely shows me the scratches right away. We have to conduct regular covert ops to make sure his shoes aren’t pinching, or his pipe cleaner style jeans aren’t making his skinny legs itch.

But if we believe that a lesser expression of pain indicates that no pain is felt, then we truly do not deserve to be anywhere near autistic people, let alone purporting to provide them care. We have already seen what happens when people are not believed about their pain levels in medical facilities—they may be denied pain relief and diagnostic testing which is readily offered to people whom staff can relate to. Women, black people, the overweight, and the disabled are often treated this way, and not only is it Not Okay, it can cause long term trauma, protracted illness, and even death. Being disbelieved and dismissed because of unexamined prejudice is a terrible injustice, not some minor side effect of seeking help.

A different incident: A has been enjoying Buddy Ball a lot this season, partly because R is a volunteer there. Teenagers play various sports with special needs peers. The environment is low key, supportive, and a rare moment of social engagement for our kids. Talking to other parents there about what other activities their kids do, it’s clear that there just isn’t enough out there. Sure, there are once a month/year events, but not a lot that our routine-loving teens can count on on a weekly basis that we don’t have to pay privately for.

So imagine the curl of my lip when I heard that Buddy Ball breaks for three months till March because the wrestling team needs the gym. That’s it. That’s the reason. Good old fashioned prioritizing. Our kids aren’t going to win any glory for the town, and they don’t need the athletic scholarships, so they can wait till spring. We’ll still get told that they must be physically active, of course, by the same medical folks, but that onus is on us. And the peer socialization that is the hardest piece to locate conjoins with seasonal burrowing, so yeah, excuse me while I call ableism on every town that makes these decisions while also being too fragile to own it. Why are we not more grateful that Buddy Ball exists at all. Right? Why, as we struggle to keep A occupied over the winter and summer months, do we not practice more self care? Why do people not see us more often at street fairs and melas and Rutgers Day and… and….

R, ever the crusading big brother, is on a music committee in school, and when they were discussing programming for younger kids, asked if special ed kids were going to be included. Everyone immediately said yes. Beautiful teenagers with beautiful hearts. I love them so much. But you know, that’s all it takes. The simple spark of ever-present consciousness. In everything we do, practicing inclusion. It is both the simplest and most complex of human endeavors, but it must become internalized as a mandate, and we must never waver.

Radha.

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