This is for the next disability blog carnival. One of the questions asked is “Is there someone whom you have met in real life or online who has had an impact on how you view your disability or disabled people in general?” This is my answer.
How do I even articulate the ways my family shaped my views on disability? It’s a very mixed bag. And in saying what I’m about to say, I do not want to give the impression that my family is some kind of romanticized disability utopia. Far from it. There is plenty of misunderstanding, prejudice, and ableism to go around, just like in most families. Yet in being who they are, my family taught me a lot about disability without even knowing, without even trying. They taught me even despite the words that would sometimes come out of their mouths and the prejudice that led one family member to not allow me near his children unsupervised because I lived in a residential facility. There was something deeper going on underneath that even that kind of behavior could not fully eliminate or obscure. And since I generally see things like this from underneath, I learned lessons that nobody tried to teach me.
Most people in my immediate and extended family experience disability in some way. Whether it goes by the common classifications of developmental disability, psychiatric disability, chronic illness, physical disability, cognitive disability, or things that blur all these artificial lines, these things are practically everywhere in my family. I’m not exaggerating. I hate having to fill out forms in doctor’s offices about family history. I end up having to circle practically everything, and write in a lot of extras.
On the surface, various family members may either accept or reject the views society places on disability, and in many different ways. But underneath… underneath is where it gets really interesting.
Because the biggest message I got from my family, without any of them ever trying to send such a message, is that disability is inseparable from the human condition, from life itself. I look at us as a whole and I see an amazing landscape of human variation. I don’t see defective people. I don’t see people who never should have been born. I don’t see unpersons. I don’t see empty shells. I don’t see burdens on society and on each other. I just see people.
I was trying to explain all this to my father when he visited recently. It’s really hard to put into words. I brought up the people I’ve known who are the only disabled people in their families. I would never want to put up with the bullshit that some of them have to put up with. Not that my family doesn’t have its own brands of bullshit, but still. At least I can look underneath the bullshit and see that ever-changing landscape of people who are in similar positions to me.
They may or may not think about it the same as I do, but it’s not their thoughts that gives me an advantage. It’s their being. It’s who they are. It’s who all of us are, in relation to each other. Some things are deeper than words, deeper than thoughts. They make their way into the core of your being and connect you to your roots. Nobody can break these connections, not even if they want to. They transcend hatred, prejudice, bullshit, and all the other things that can tear us apart on other levels.
This means I was never prepared for the level of contempt for our very existence that exists in mainstream American thinking. That contempt is hidden behind discussions of how horrible and traumatic it is to have a disabled family member. I could never get into support groups for children of disabled parents, siblings of disabled people, and so forth. Because so much of what they say is all about the “normal life” they wish they had had. And they have all this resentment for the position they’re in.
I hear people say things like “I didn’t get to have a childhood because my mother was disabled” and I want to shake them and ask “What do you think ‘a childhood’ is supposed to be!?!?” But I know what it’s supposed to be. It’s supposed to be an entire world without people like me in it. We’re always described as barriers to the normal lives that people around us deserve. I can’t get on board with that. I can’t even fathom how that is considered a good thing.
Seeing how the rest of the society we live in viewed people like us was almost like a kind of culture shock. Even the worst of the disability prejudice within the family was nothing compared to what I found outside of it. Reading about the way the eugenics movement targeted families much like mine, in terms of disability, class, and race (during that era many of us were visibly mixed-race), makes me glad we escaped that fate, and horrified for those who didn’t. Of course, eugenics did play a part in the struggle my great aunt with an intellectual disability had in getting married to a man with a similar condition. But we were never systematically targeted as a whole.
Still, to this day the remnants of eugenics seem to be everywhere. There are people who think it ought to be illegal for anyone with genetic conditions to have children. Or that it’s a mother’s duty to abort a fetus found to be disabled. And that if people disobey this, then their children ought not to benefit from any kind of disability services from the government. What that tells me, is that people don’t want me to exist. They don’t want my family to exist. Any of us. They would rather none of us had been born.
I have trouble having those conversations. I have trouble believing anyone should be in the position of having to argue for their own existence. And people saying these things usually believe they’re being totally sensible and not acting from hatred and naked bigotry. They say my emotional reactions mean I can’t think clearly on the matter. If what they do is thinking clearly then I want no part of it. I can’t describe the pain, or the rage.
My mother once wrote to me. She had been reading things by other parents of autistic children. They said that all parents of autistic children think about killing their child at some point, and that parents who say they haven’t ever thought that even once, are lying. They said that no parent would deliberately have a child if they knew their child might be autistic. My mother told me that doctors had suggested she abort me before I was born. That she didn’t listen. That she’d always wanted me. That she wanted me to know that they had never, ever, not wanted me to exist. That knowing I would be autistic would not have changed anything. I cried. I cried because these people had made her feel like she needed to tell me that. I can’t imagine how that felt for her. I can’t think of it now and not cry.
A lot of people in mainstream American society seem to believe that they have some kind of absolute right for us not to exist in their lives at all. That it is only natural that we be taken out of our families and put into group homes, mental institutions, nursing homes, and the like. That it is only natural for us to be taken out of school and put into segregated special education classes or schools. That we be put onto government programs that are run in such a way as to make us an underclass below people who actually work for a living.
I never understood these “rights”.
When I was in special ed, I noticed something. I noticed that a lot of us had been taken out of traditional classrooms, because of excuses like “It would be too hard for the teacher to teach all of these different kinds of people,” or “These people are a distraction to the regular students and impede their learning.” And yet… here we were, in classes, together. When they bothered teaching anything useful at all, teachers had to accommodate our various ways of learning. We had to learn to concentrate in classes together with people who were supposedly too distracting to be in regular classes. We were people who supposedly struggled to learn or socialize the same way other people did. Nondisabled children were supposed to be really good at these things. If we could handle it, why couldn’t they? It didn’t make sense.
The reality was, that those weren’t the real reasons we were in segregated classes. We were in segregated classes because nondisabled people felt they had the right to learn without us present. They felt they had the right to a world without us in it, with us shunted off to the side somewhere where they didn’t have to bother getting used to our presence.
Mind you — I don’t believe in traditional school. I believe it’s just another form of institution, with the power structures that lead to bad things. I believe it’s unnatural to separate people out by age and expect them to learn socialization from people as immature and inexperienced with it as they are. Because it’s considered normal, few people in mainstream USA think of this, and many are outraged when I say such things. But I know how damaging school is to the minds and souls of the people who attend it, even if many people deny that this happens.
So I am not saying that I wish everyone was in regular school. (Nor am I saying the thing some “inclusion” advocates say, that it’s bad for disabled people to be together because we might catch disabled cooties and they want us to learn to be more like nondisabled people.) I wish nobody was in regular school. I wish learning happened instead, in ways that most people cannot even imagine. But nonetheless, I dislike the fact that nondisabled people in regular schools think they have the right for us not to be present with them. That’s just messed up.
But what I said about how things ought to be done in a way most people cannot even imagine? I don’t just think that about school. I think that about the entire way our society deals with disability. I want everyone to be able to see that vast landscape of human variation that I see when I look at all people, disabled and nondisabled. I want people not to see us as defective, as people who ought never to have existed in the first place. I want people to see our problems as just part of the human condition, just like everyone else’s problems, not something specially and uniquely horrible.
And I get that mentality from my family. They didn’t necessarily try to give me that mentality. But they succeeded anyway. They showed me who they are, who I am, who we are, down as deep as it goes.
I have a story that’s been writing itself in my head for a long time.
A disabled girl seeks out the nymph-like beings who make up the trees and the rocks and the landscape in her world. She expects them to look like the nymphs in pre-Raphaelite paintings. Instead, to her shock, they have the same level of diversity that humanity has. They come in all sizes, colors, and body types. Including many that are disabled. Including some who look just like her. When she sees the ones who look the most like her, she is shocked. And repelled. And she runs away in terror, and goes home and cries. She can’t get the image out of her head. She was looking for what she considered “better” than her, and instead she finds she’s almost looking into a mirror. But eventually she learns, that just like the trees and the rocks and the ground come in all different types, so do people. That trees, rocks, and ground don’t mind this. That people shouldn’t either. That there’s nothing horrible and unnatural and wrong and shouldn’t-exist about the way she’s been built. And then she cries for an entirely different reason.
That’s how I see disabled people. And that’s what my family taught me, willingly or not. I may have been getting messages from society ever since I can remember that there was something terribly wrong with me. (One of the first conversations I remember between my mother and a stranger involved a stranger asking her what was wrong with me.) But… I was also getting that deep down underneath message that all kinds of people exist in the world and had a place in it, disabled or not. That both the good and inconvenient parts of disability were just part of what goes on in life, not something jarringly different from “real” life.
My most basic views on disability don’t come from ideology. They don’t come from buzzwords like neurodiversity or social justice, or the movements and ideologies surrounding those terms. They aren’t specific to autism and don’t come from the autistic community. They come from deep down in my bones, the bones my family gave me.