[this is a repost from my old blog, since several things link to it at my old blog which isn’t showing much sign of coming back soon, other old blog posts should follow eventually]
I have a lot to say about it. A lot of it is stuff I won’t normally say or stuff I’ve never said all at a time before.
Fortunately in an odd way for me, there’s something stereotypical enough about me that I got services after I moved out of my parents’ home. But due to the fact that I was so isolated at the time, most people, even my family, don’t know a lot about what the time in between moving out and getting services was like. And there was quite a stretch of time in between, in which I honestly believed that I needed to go back to a group home because I’d been brainwashed like everyone else into believing that significant levels of assistance only came from institutions. I just had no clue how to get back to one, which is fortunate.
I rented a room that shared a wall with a bigger house. There was a family of people living there. The little boy — homeschooled, therefore nearly always home — tormented animals, including my cat. His mother’s only response? “I can’t make him care.” (She also held the incompatible belief that he was exquisitely sensitive to all suffering because he’d supposedly screamed about blood when someone was cutting down trees.) The neighbors across the street were often threatening the neighbors next door with death and violence, and I was glad that my little add-on attracted so little attention that even the mailman didn’t always know it was there.
I spent most of my days doing — and able to do — very little. Unless you count banging your head on the wall, because I did a lot of that. My epilepsy was uncontrolled and I once found out I’d been having seizures for twenty minutes. I was in a redwood forest in the mountains of California, and there was mold everywhere. This meant a lot of migraines. And not thinking straight. At all.
Meanwhile the professionals in my life were angry because I’d abandoned them and my parents had allowed me to get away with it. Several predicted death and other dire consequences of living outside their clutches.
Sometimes I was able to drag myself outside, where I sat in my driveway and lined up stones or stacked them on top of each other. Then I went back inside. Sat on the bed. Or the floor. I was disoriented a lot of the time. In a two-room apartment. Couldn’t find the kitchen. Or the bathroom. My perceptions got so mangled that it was often a wonder if I could tell the floor from the walls. I fell down a lot.
I also froze in place more and more, and it became harder and harder to get going. Going to the bathroom, in the bathroom? Not always likely. The floor or the front yard got used just as much, and I often had to sit in it because I couldn’t move enough to take care of it. I sat and didn’t move a lot. And sat and rocked a lot. Screaming, head-banging meltdowns were also common.
Meanwhile my neighbor occasionally came by and tried to scare me with stories that the house was haunted. That "The ones you have to worry about are the ones without bodies." Apparently she and her husband wanted the entire house to themselves but couldn’t afford to rent both their house and my add-on. So they’d gaslighted several previous tenants right out of there. One time while I sat in the front yard, their boy walked up to me and said “I hope you’re not crazy like all the other neighbors.” “Crazy” was what it was called when the previous tenants had believed the stories, which his parents denied telling, at least in front of the landlord. Meanwhile, the neighbor offered me lessons in black magic, which I declined.
Then there was food and water. I couldn’t buy or prepare a basic meal. I set a few things on fire trying to operate the stove. If someone gave me step by step prompting on the telephone, all day, I could get at least some food. But not enough. I got thinner and lying down got uncomfortable because of the way my bones poked into things. This prompting wasn’t just “Pour water in the pot, then turn the stove on.” It often started with moving one limb or digit purposefully. A prompt that had to be repeated over and over for me to be able to do it. Repeat for every step and you can see why it took all day. And this isn’t to mention all the times that I couldn’t understand or obey the prompts and started screaming instead. The phone bills were huge and the person at the other end of the line, autistic and physically disabled herself, was running herself into the ground.
There was a lot I didn’t understand how to do. And even things I understood, I couldn’t do because of the rapid interplay of perception and reaction they required. Getting through the day was exhausting, and getting through the day didn’t even mean fully meeting even one of my basic needs.
At the same time all this was going on, I was dealing with the aftermath, both physical and emotional, of years of intensive “treatment”. I’d been off of neuroleptics for five months when I moved out, and the worst part of the withdrawal was over, but I was still regaining some cognitive abilities. Until I realized it was doing me more harm than good, I was still on the super-restricted diet that I’d been pressured into accepting. And to say I had flashbacks of institutions would have implied I’d grasped yet that I was not living in one anymore. Which I hadn’t. I’d barely started making any chinks in the idea that thinking for myself wouldn’t kill me.
And I had a bunch of untreated infections and serious health problems because as usual I couldn’t communicate adequately to describe what was happening to my body.
If this sounds like a disaster, that’s because it was. But it was also a time period when I was discovering how to communicate with other people — how to attach words to the things inside my head in order to bring them outside my head — by typing. I was discovering, odd as it sounds, that I was a worthwhile person who had a place in the world. I was starting to see disability in a political context rather than the tragic, individual, and medical contexts I’d seen it in before. I had to fight every step of the way for this: Every piece of training I had said I was not supposed to think these things. Online, I read parents doing the same things to their children that had been done to me. I cried. A lot.
The computer was the only physical place I felt all that competent. I was learning about communication, and things were finally snapping into place there that had either never snapped into place that way before or been lost a long time ago in one of the so-called regressions. I started writing to pass the time. I wrote about things I was barely beginning to see: That people like me had some value in the world, weren’t just useless throwaways who belonged either locked up somewhere or cured, a lot of the same stuff I write today. I prayed a lot and wrote what I could perceive spiritually before my training could shut off expression.
The reactions to my writing were often horrifying. Today, I am surprised I was able to keep writing. Sometimes, of course, I wasn’t. But often I was. My daily experience became one where I could barely move in most voluntary ways without tremendous amounts of assistance, I was peeing on the floor, unable to eat, unable to speak, unable to get up and get a glass of water for myself, half-starved, barely able to understand my surroundings, “wandering” aimlessly outside, sleeping on a completely random schedule, looking so “non-functional” by ordinary standards that if the wrong person had seen me I’d have been in an institution fast for sheer inability to take care of myself. The local teens, if they saw me, found ways of “messing with” the “retard”. And then I would do the only thing I could do well in an outwardly-visible way — write — and get dismissed. Wholesale. Often viciously. As too “capable” to understand “real” autism.
I was not able, at the time, to write fully about what I perceived then. I tried, but I only got parts, and the parts I got probably confused people. What I perceived was a glaring contrast, so glaring that it was stunning. The contrast was between what the majority of online parents and even many online autistics thought of my life, and what my life actually was. It had been so ingrained into many that political opinions like mine are formed in good times, not in times of extreme hardship, that they had, pardon the language, no fucking clue what kind of person they were looking at and what kind of life I was living. And I wasn’t all that well-equipped to tell them because the communication skills I was developing were still uneven and it took a long time to get from knowledge to fingers, still often does. (That’s why you’re hearing this now instead of six years ago.)
People who had no knowledge of me in person were calling me a liar. They said I wasn’t really autistic. They said that if I really were autistic, I did not really live the kind of life I led. They said that I did not look like I did. They even told me that I could speak, that I had a job, that I had never lived in an institution, that I did not bang my head, that I had never had any of the “therapies” I was criticizing, that I could “take care of myself”. I was often torn between laughter and tears wondering how they would react if they saw me in person, a person who looked and acted like I could have been used as a poster child for the “keep institutions for developmentally disabled people open” movement, one of those supposedly-ridiculous examples of “Would you put someone this low-functioning in a house by herself???” I suppose I also could’ve been used as a poster child for the “cure autism” movement, considering that parents described my daily life or many things much tamer than that when they described futures they were trying to prevent by curing their children.
That was the contrast I lived, and to a large extent still live, although I now have enough services that I can do more than I could before. (Any break in these services and I go back to being able to either understand my surroundings or move but not both and often neither.) That is in fact the contrast many autistic people live. But few experience that contrast more than those of us who find that not only our writing skills, but what we write about, contradicts every stereotype of the sort of person we are in the offline world. Anyone who says “Autism is horrible because this is what my offline life is like, and you people just don’t understand how much misery autism causes me, you must be a bunch of high-functioning aspies if you’re autistic at all” is much more likely to be believed than those of us who may live a near-identical kind of life and continue to assert our right to be who we are. (Not to mention that the diagnosis of Asperger’s syndrome doesn’t mean a person couldn’t live this kind of life.) And many such people will turn around and tell us we’re liars just as fast as cure-oriented parents will, because it’s in their perceived interests to associate “(perceived) level of impairment” with “level of hatred of autism” and “level of acceptance of the status quo”.
I was, in a way, lucky that it was only one area that stood out in contrast to the rest. I can’t drive, work, pass for NT, or speak, and people know there’s something really weird about me when they meet me. That means that when I applied for services, although I have many times encountered resistance and misunderstanding, I qualified almost immediately. I got SSI on my first try. Same for in-home support services and Regional Center services. When I got that last one, I had to fend off people trying to institutionalize me in a level three group home, I now am told I would qualify for an ICF/MR if I didn’t have in-home services. While there’s occasionally question about why I do, and what kind of services I need, there’s very little question that I appear “non-functional” enough to get services. That doesn’t sound like a good thing but in some contexts it’s saved my life.
Note: I as always reject the terms low-functioning and high-functioning, and this isn’t an invitation to call me low-functioning. But many people would and have. That my insight or writing skills (some of the time, on both of those) don’t match the stereotype says more about the stereotype than it does about me or anyone else who’s ever had that label. When parents say their non-speaking children can’t possibly understand something, my main response is “Maybe not, but how do you know?” It’s been my experience that my level of understanding of my surroundings, of the world in general, of myself, or of anything else, is routinely under- or over-estimated even by those closest to me.
Joel Smith doesn’t often pass for NT, but he can drive, work, and sometimes speak. And he’s a self-advocate, no-cure, disability rights sort of person when he writes, not a woe-is-me my-life-is-hell-I’m-the-lowest-functioning-person-on-the-planet we-need-a-cure-for-autism type. All of that works against him in the stereotypes of many. This kind of stereotyping has got to stop. It may not sound like sophisticated disability theory, but these are people’s lives we’re talking about. He’s not the only one. The prevailing view of how abilities fit together, as well as of how abilities are connected to political views, has to change. Or people will die, and in fact I am certain that many people are already dead over exactly this kind of thing.
People need to stop spreading these stereotypes. That includes autistic people who think that by questioning our diagnostic credibility because of our political views, they will come out ahead services-wise. We’re all in this survival thing together and it’s not okay to sacrifice others that way.
I’m reminded of a post from way back in the depths of time, and apologies for digging this up but it describes the situation so well in the words of one of the most well-known anti-cure autistic self-advocates out there:
You know where this is leading to? I’m going to die here. Maybe soon, if this throat infection overwhelms what’s left of my immune system and turns into pneumonia. Maybe a little later, if I can’t shop or forget to eat for a few days too long. Maybe alone at home, if I have another bizarre accident that’s more serious than the ones I’ve had so far; or maybe on the streets, if my “weird” appearance attracts more violence of the sort I’ve been a target of all my life. Don’t think that just because I’m not mentally retarded, I’m any less affected by autism than your brother is.
That’s from a really old Usenet post by Jim Sinclair that can be found by clicking here. I can only imagine that xe must have been in a similar situation to the one that too many of us have experienced — that contrast again. I don’t agree with some of the statements made, particularly the assumptions about IQ, but I can imagine too well the situation that prompted that post.
It is also this situation that Laura Tisoncik wrote about in Why I Am Angry, saying:
I hate the parent-professional axis that rips people to shreds then drops them into oblivion when they hit adulthood. I hate anything and everything that pays lip service to autism services but with with all its resources couldn’t do what I could do with next to nothing. I hate autism societies that have no use or place for autistics except as an occasional token to perform as freak shows at conferences. I hate “child centered” organizations that leave adult children to eat coffee grounds when there are no more parents to serve. I hate a system that mourns for t
he purgatory of the parent but doesn’t even give a damn about the hell of the autistic.
If anyone wonders, I’m the “19-year-old friend” in that article and she’s the one who ran herself into the ground making sure I could survive while she was barely getting by herself. Anyone who thinks being autistic means lacking compassion doesn’t know her.
Sometimes, while barely (if at all) able to perceive my surroundings, move, perceive the passage of time, react, or some combination of those things, I laugh in my head at the contrast between my life and the way people online pretend to themselves that my life goes. It seems bizarre — and I can have a downright twisted sense of humor — that so many people think they know what my life is or has been like. Sometimes, though, I scream or cry, because I know what the cost of their misperceptions is to people like me, and it’s not a price I want me or anyone else to have to pay. Too many of us pay some or all of it every day.
It has to stop. One ability is not another ability, no matter how closely related (or identical) they seem in abstract stereotype-land. Period. The appearance of an ability does not mean the ability is there. Period. One ability some of the time is not one ability all of the time. Period. Political views on curation, institutions, or anything else like that, do not indicate kind or level of ability in any particular area. Period. All of those are true when inverted, too, appearance of obliviousness doesn’t mean obliviousness for example. Those of us who know this will not shut up about it, and people who don’t had better learn what’s at stake when they trivialize what is happening to us.