as small as a world and as large as alone, lichgem: pissabled: can we also talk about how...

9:25pm September 2, 2014

pissabled:

can we also talk about how any disabled community is skewed to the benefit of people diagnosed in childhood, who had parents who cared enough to take them to the doctor and enough privilege that doctors believed them

and how the loudest voices are always the people who can afford expensive assistive technology and medication

and how those of us who are self-diagnosed or late-diagnosed or never-diagnosed, who self-treat or are unmedicated / untreated because of lack of access to care, are considered outliers and not worth thinking about

i know other people are already talking about this

but we need to keep interrogating the hierarchies in our own disabled communities if they’re ever going to change in ways that can benefit the people who most often get left behind

Content warning: Ableist abuse, suicidal ideation, child abuse.

I don’t think being diagnosed as a child is a privilege. There are a lot of abuses that disabled children face. My parents used sending me to therapy to cover up their own abuse. I was first diagnosed in a psych ward on an involuntary hold when I was thirteen, and it was extremely traumatic. Nobody even told me what my diagnosis was, because why tell a kid anything? Especially a crazy kid. Nobody even considered that I might have a right to know, yet I was still expected to go on medication that I didn’t understand or ask for. The psychiatric system colluded with my parents in their abuse of me. Any reactions I had to being abused could now safely be blamed on mentall illness.

The idea that getting treatment at a young age is a privilege is contingent on the idea that that treatment is actually good for disabled kids, and not abusive or coercive in any way. Disabled adults have a hard enough time getting real treatment, and we usually have a good deal more agency than children do. Those of us who are not institutionalized, or considered legally unable to make our own decisions, usually have power over which doctors we see and what kinds of treatments we try. We also tend to have the ability to recognize it, and put it into words, when we’re being abused. Not always, but moreso than children.

There are numerous accounts of abusive therapies and treatments out there that disabled people had to go through as children. Much of it emotionally abusive, much of it physically and/or sexually assaultive, often all three. I wish I could link to something, but I don’t have anything bookmarked. I can only recite from memory:

-A woman had to quit her job as a teacher of autistic children because she couldn’t stand the things they were asking her to do to the kids. They had her squirting them in the face with vinegar and using other physical punishments. One of the kids in her class, weeping, said he wanted to die.

-Google ‘quiet hands,’ if you think you can handle it. People taping autistic children’s hands down to the desk as they scream in pain, so as to ‘teach’ them not to hand flap.

-A physically disabled man realized that physical therapy he underwent as a child was sexually abusive. It involved an adult woman moving his body against his will, as part of his treatment.

-The sterilization of disabled children, because people are repulsed by the idea of them becoming sexual adults someday. The stunting of disabled children’s growth through hormone treatments.

Just think about the ableism adults face, and add the powerlessness of childhood to the mix.

This scenario where early diagnosis is a privilege only works in cases where the treatments are actually effective, and not abusive in any way.

I do agree that being able to afford treatments is class privilege, but that, again, implies agency.

I was in therapy from the age of seven, and received my formal autism diagnosis when I was 14, then again at 18, 19, and 22. I was also diagnosed and misdiagnosed with a number of psychiatric conditions along the way. Most of which I didn’t actually have, but which were a really bad misreading of a confused developmentally disabled person with a lot of emotional problems. I went through hell.

Being diagnosed early does give me some privileges. For instance, in California, it’s very hard to get DD services without proof that you were diagnosed with a developmental disability prior to age 18. Never mind that if you’re diagnosed with autistic disorder, as I was, then by definition you had it before the age of three. No matter when you were diagnosed, the criteria state you had to have it before the age of three. So their method of claiming “You weren’t really disabled unless you were diagnosed younger than 18” is bullshit. An adult diagnosis of autistic disorder means you had it before the age of 18, period. But the childhood diagnoses helped me get services quickly and efficiently without having to put up much of a fight. And I needed those services, they weren’t for recreational purposes, they were for survival purposes – eating, drinking, using the bathroom in places other than the yard and the floor, cleaning the house, cooking, things like that.

I knew a guy with cerebral palsy, another thing that has to be from childhood no matter when you were diagnosed with it. He had really obvious, really severe CP. But his childhood records were all in Alaska and presumed destroyed when he started getting Regional Center services in his fifties. And it took a lot of fighting to get them to realize the obvious: That he had CP and had always had CP. How you could miss the CP, I don’t know, but the Regional Center seems to hire specially trained people to miss people’s disabilities so they won’t have to spend money on us. And one of the ways they do that is by prioritizing people diagnosed prior to the age of 18.

But an early diagnosis can also mean you’re put under conservatorship or guardianship. That when you get SSI, you have a representative payee who handles all your money for you and gets your government checks. It can mean that you are never allowed to vote, never allowed to have sex, never allowed to choose your own friends, never allowed to be an adult.

It can mean that your parents have your entire life planned out for you: Parents are always afraid what will happen to their DD offspring when they die. And many of them channel this fear into looking for the “perfect program” for their child. They read glossy brochures that show beautiful grounds and amazing architecture, filled with pictures of smiling disabled people doing “productive” work. They consider sending their child to a pseudo-utopian farm community. Or a board and care home. Or a group home. Or some other kind of institution that masquerades as better than “real” institutions, but actually in practice can be worse than the stereotypically awful ones.

When you’re diagnosed as a child, your parents really do often have a long-term plan of how to “transition” you to adulthood (“transition” is a very triggering word for me in this context), and where to put you, and they don’t often think about allowing you your own apartment with or without 24-hour assistance from staff or roommates. That would be too drastic, too radical, too “unsafe”. So the one place that may sound the most appealing to you, is the one place your parents don’t want you to go. Sometimes DD people deliberately try to get put into prison or a large institution to escape the hell of small institutions, and they know prisons and large institutions are hell, but most people don’t know that. So when we request that we go to a place that everyone has deemed as a hellhole, over a place that is a worse hellhole but is really really pretty and appealing to the family, you know which one will win out. They’ll consider our preference for obvious hellholes to be a sign we aren’t ready to make our own decisions.

So you can have your life like it’s a conveyor belt when you grow up like this: Special ed, special ed, special ed, group home, group home, group home forever. And they think by putting you in a “protected” environment they are keeping you safe, even though there is nothing safe about group homes. But they want so much to have you somewhere “secure” before they die, that they aren’t ready to listen to your objections. And they may consider your objections to be a result of your cognitive disability, rather than reasonable ideas based on experience, memories of traumatic experiences, and careful reasoning.

And many times the ‘help’ that we get is anything but help. Most 'help’ aimed at autistic people exists only to teach these things:

How to be obedient and follow commands. Compliance training.
How to parrot back (sorry to parrots, I know y'all are actually talking) what you’ve heard, such that you appear on the outside to have the same goals in life that everyone around you want you to have.
How to appear as nonautistic and nondisabled as humanly possible. One teacher at my special ed school said her entire goal for her class was to make it so that when they went out in public they didn’t “look retarded”. The actual goal of the class was supposed to be to teach basic daily living skills. (*)
In the worst cases, how to become a trained robot with no mind of your own and no mind left to notice you don’t have a mind of your own. Where your mind becomes so preoccupied with looking normal, that you have no room left in your mind to think or question or even know who you are. These are the people pronounced the biggest autism success stories, and it makes me want to cry.

They are, of course, finding that these interventions don’t actually work in the long term. Social skills training falls apart in adolescence. Training in specific tasks only works in the environment we were taught in, it doesn’t work in new environments we might encounter. There are so many things they “teach” us, but most of that teaching does not 'take’. It doesn’t allow us better skills in adulthood. Sometimes it makes our skills worse. I went through a lot of behavior mod and it made my life a lot worse in the long run. I was considered a perfect candidate for behavior programs because I responded so well to reward systems such as food or being allowed to call my parents once a week. I also responded well to punishment-based systems. But they didn’t know what they were tweaking with and they did a lot of damage.

The damage came in because much of the training I received was about “not isolating”. I had to socialize a certain number of times a day, 'initiate and sustain’ a certain number of 'peer interactions’. I had to stay out of my room, and especially stay out of bed, even when I was on so many psych meds that I would flop over and drool no matter where I was, and bed seemed like the best choice for that kind of activity. I also needed to go to my room to escape overload.

So what happened was after a number of varied behavior mod programs, I learned that the more overloaded I felt, the more I needed to stay out of my bedroom and socialize with people. Overload drastically decreases any autistic person’s ability to function. I lived with constant shutdowns and meltdowns, and what I called “sensory disintegration”, where every sense turned into the equivalent of swirls of pixels and color, and all I could do was rock and rock and rock, trying to feel anything at all, in a world where I had suddenly become meaning-blind, meaning-deaf, meaning-smell-blind, meaning-taste-blind, and meaning-touch-blind. My mom would wrap me in blankets trying to bring my senses back faster. This was more intense than any overload I’d had before then, even though I’d had similar types. And it was all because I was being taught to systematically disregard every single reminder my body sent me that I was reaching critical levels of overload. It took years to undo this training.

And that’s besides the stuff that was so abusive it was similar to early Lovaas. Like hitting me sharply in the leg and saying “look me in the eye” and hitting me harder the more I looked away, softer the more I looked towards him, until I looked him in the eye. That one stands out among the suckage of childhood diagnosis.

But all of that said? I think that both child and adult diagnosis, as well as child and adultonset, of disabilities, have different levels of privilege associated with them based on the specific area. Being disabled is kind of like being LGBT, in that two disabled people, any two, can have multiple different levels of privilege and oppression towards each other. Some of them will be more important than others, but it’s always complicated.

Personally, my disabilities include onset at birth, onset in early childhood, onset in mid childhood, onset in adolescent childhood, onset in early adulthood, and onset in my late twenties and early thirties. (Although some of those late-onset ones may still be genetic things that were hiding in the background all that time.) I have stable disabilities, progressive disabilities, and fluctuating disabilities. I have disabilities that fall under every major disability category: Physical, chronic illness, emotional/mental/psychiatric, cognitive, developmental, etc. Some of them are extremely severe, and some are so mild I barely notice they exist. Some of them fluctuate in severity over time.

So I have all the experiences combined, pretty much. And that’s why it’s easier for me to see this from multiple sides. And to see that, yes, childhood onset or childhood diagnosis can mean certain good things, it can also mean certain really bad things. The same is true of adult onset or adult diagnosis. It’s a complicated and fascinating topic with no easy answers, that I would love to discuss with people in more depth at some point.

(*) And as such, I should’ve been in that class or the next class up which taught “independent living skills”, but since I had good academic skills they assumed I had no problem in those other areas. In reality, I had good academic skills and actually worse daily living skills than many of the severely cognitively disabled kids in the life skills and independent living skills classrooms. Institutions actually realized this and put me on ADL programs, but institutions saw me 24/7. School only saw me a few hours a day so they didn’t get to see the horror that was my abilities at ADLs and IADLs. I am still pissed that they didn’t put me in at least the independent living skills class, because I could have really used the instruction in those areas, and I didn’t really need help with academics anyway, I needed help preparing my functionality for adulthood so I didn’t land in an institution or homeless.

TL;DR: I talk about a lot of ways that being diagnosed as a child can really suck and cause exposure to some really nasty ableist practices that stay with you the rest of your life. I don’t talk much about the opposite, although I know it exists because I remember before I was diagnosed, even though I was already in the psychiatric system to some degree by then. I talk about how I have so many different types of disabilities that I can see things like this from multiple sides and perspectives. And what I see is that it’s complicated. You can’t say that adult diagnosis or child diagnosis is better. You can only say that for a particular person, one or the other might have been better, maybe.

At most. I consider the complexities of dealing with multiple types and onsets and diagnosis ages of disability, really fascinating and would love to talk more about it to anyone interested. So long as it doesn’t turn into a “who has it better” debate because that’s not what I’m into, not even here. Here the only reason I’m talking about how childhood diagnosis can screw up your life, is because adult-diagnosed people are not always aware what happens to a lot of child-diagnosed people. But the same goes for child-diagnosed people who don’t understand the hardships adult-diagnosed people have gone through. Which I would love to talk about, but my tl;dr summary is becoming a monster-sized wall of text in itself. So I will restrain myself.