Barb Moran writes, “They never used words like reward and punishment at Menninger’s, but who were they kidding? If I wasn’t allowed to go somewhere because of my behaviour, what was it? In 1967 I had a funny thought of what it would be like if you put a comma between first and last names of people like you do places, as in “Topeka, Kansas.” I laughed about it. I even told the worker why I was laughing. She didn’t let me go to the carnival they were having at my school that day because I laughed. I hadn’t done anything wrong except laugh at something that someone else didn’t think was funny. And now they say that laughter is good for the immune system!” (From Sharing Our Wisdom, “Life in the ‘Best’ Hospital'”, Barbara Moran)

Institutions, both traditional and non-traditional, launched a similar attack on me. In my case, one of their primary targets was my tendency to spend time alone. “Isolating” was nearly a criminal offense and there were several programs designed, by reward, punishment, or both, to keep me from doing it, or to spend more time around people (effectively the same thing).

They must have been successful.

Tonight, I am overloaded. Very overloaded. The kind of thing where I really don’t belong around anyone else, I belong alone as much as possible until my brain stops doing this to me. I would not be comfortable around another person, and I would not, despite having topics I need to discuss with one particular person, be able to hold a good discussion on those topics.

I used to know this. This used to be instinct. My body used to just naturally go to my room (when I had one), or avoid being around or noticing people as much as possible (when I didn’t or wasn’t allowed in my room).

Yes, I used to walk into my room and lie down. And be confronted with staff barking at me about “isolating” and “withdrawal” and other things that were apparently criminal. Sometimes I was picked up bodily and placed in the dayroom, or living room, or whatever they called it in any given place. Even when I was sick or overdrugged, blinking and noting that half a day had gone by and there was drool on my shirt. It was important to them, very important, that my body be among other people at all possible times.

This is one of the problems with what is done to autistic people: It often makes us less able to function. Being able to spend time alone, and to recognize when we need to spend time alone, is vital to many of us. Yet many of us are put on programs just like mine, that train us against our correct instincts. These days, when I am so overloaded that I know I need to stay away from people — days like today — I have to fight an urge to at least be in a room with other people and a fear that I will get into trouble or be a bad person if I don’t. The urge is not explicit, it’s just there, an aspect of training that even I, who don’t pass for NT at all, seem to retain. It takes conscious and deliberate recognition of the urge to fight it.

So I am alone. And I will remain alone as long as I can, and as long as it takes to deal with this. This is better than it was before, and easier to do without fear. But the urge is still there and that is disgusting to me. Not that I am disgusted with myself, but I am disgusted with a set of rules that says behaving, even in a small way, like a non-autistic person, is more important than being a healthy autistic person.

Healthy? When I lived with another person earlier this year, who was almost my dream roommate even though neither of us wanted to live together (it was forced by circumstance), migraines came in full force. I could barely and rarely get out of bed. My pain levels skyrocketed. By afternoon I was often too limp and exhausted to do anything. This is what happens when you force someone whose body needs a huge amount of solitude to live with someone, even someone they’re close to.

I have no innate desire to wear myself out to that point. But if I followed these urges set there by the all-knowing professionals who knew so well that what I “needed” was to be around people for all my waking hours, that’s exactly what would happen. It doesn’t matter if the training to do this was awful or fun (and they did sometimes make it fun and “reward-based,” it changed things not one bit), it matters what they were training me to do, what they did with the power they had over my life.

I am glad that today I am able to say “I need to be alone. I will not deal with people unless I have to.” It’s taken me years to regain even part of this instinct that used to be my own, and to fight the new “instinct” that was implanted by professionals. Hopefully eventually it will be as obvious to me on a regular basis as it used to be, when I need time alone. And all the other things that people tried to train out of me.

Tags: autism dogooders institutions internalmechanics overload solitude medical power treatment training behaviormod

I was recently talking to my neighbor about something a parent had said to me once. I was talking about the real world, and the parent had seemed somehow impressed by the… uh… realness of the situations I was describing for autistic adults. “Realness” is probably a polite word for the kind of situations I was describing, similar to the article I’m linking to here. She made a comment to the effect that I was really living this stuff.

The reaction my neighbor had was something like “Well… yeah. Of course we’re living this stuff. What else would we be doing? If a parent really, really wants to get away from their adult child’s problems, they can stick them in a group home or something, and unfortunately that’s often what happens. What can autistic people do, where can we go when we get worn out?”

The answer is generally nowhere. Or someplace worse than we’re already at. And wherever we go, it’s generally still somewhere in the real world, and we’re still trying to live in it, when we don’t die from it. There are systems set up to give “caregivers” a break from autistic people’s lives, but autistic people just plain live our lives whether or not the “caregivers” are getting a break from us.

So… yes. I live the life of an autistic adult. There’s not really any option of walking away from that life and remaining living, so I’m not sure what’s so impressive about it.

Tags: adulthood outsideperceptions autism parents

On Wrongplanet.net, there’s a recent interview with Temple Grandin. In the interview, Temple Grandin says:

I would think in an ideal world, you don’t want to have people who cant talk, but on the other hand, you definitely don’t want to get rid of all of the autism genetics becvause if you did that, there’d be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn’t the really social people.

She also says:

No, I would not support [something that cured all the autism genes]. because there is a point where mild autistic traits are part of normal human variation. Because on the other end of the spectrum you have Williams Syndrome, and if you look at the brain abnormalities, they’re exactly the opposite of autism. the whole back of the brain, where the hard drive is–there isn’t too much there. But all the social emotional circuits are hooked up so [people with Williams Syndrome] are hyper, hyper, social. I’m gonna bet you there’s a lot of yackety yackety salesman that don’t talk about much of anything who are Williams Syndrome variants. But then you get to a point where a person [with Autism] cannot talk, they’re self injuring themselves, and they cannot live independently. That [is something] you would want to eliminate, if possible, but you would not want to get rid of all the autism genes because you wouldn’t have any computers– you wouldn’t have any scientists.

And:

The problem with the whole thing on curing autism is we do want to do something about low functioning autism. But the upper end.

So, as far as I can tell, the only reason she wants people like me around at all, is because we’re genetically related to people like her and people like her are useful to society. This sentiment seems widespread.

As regards Williams syndrome, I can’t help but remember the end of another Hingsburger book I read. It was about a woman with Williams syndrome. She’d grown up with no exposure to other people like her, and while her parents loved her, a lot of the people at school gave her a lot of trouble for being different. She had, unlike some other people with Williams syndrome that Hingsburger knew, no other people with Williams syndrome to discuss this with, no chance to see that people like her could be valued, no chance to see people like her who were proud of what kind of person they were.

Williams syndrome comes with a certain shape of face. She knew this. And she started trying to destroy her face. Any time she saw a mirror, any time she saw another person with Williams syndrome, anything, she’d try to punch her face or claw it off. When she died, she died terrified that she was going to meet the God who made her into a “defective” kind of person.

If people think this has nothing to do with people making public statements to the effect that people with Williams syndrome are empty-headed and useless with “nothing back there”, they’re wrong.

If people think the reason that I am afraid to look in a mirror or at photographs of myself has nothing to do with people making public statements to the effect that people who have trouble talking and don’t live “independently” and self-injure are useless unless we’re either made into some other kind of person or repositories for the genes that “balance out” the human race from other useless people… they’re wrong too.

This is why I hate the whole concept of the “HFA/AS community”. I know someone who was told explicitly that people like him were not welcome at a meeting for “HFA/AS people” because he looked too “low-functioning” and couldn’t talk some of the time. If he’s out, then I’m certainly out. I suppose we offend people’s delicate sensibilities or something?

Note that I think the division between low-functioning and high-functioning is completely artificial. I do not regard myself as either one because I do not think it is possible to divide up autism that way. I do not think there is a straight continuum from Asperger’s to “full-blown autistic”. I think that there are too many aspects of autism, that can be different in each person, for it to be possible to just draw a neat line as if autism is one trait that varies in “severity”. I say this because sometimes people get the impression that I consider myself low-functioning. I don’t. I don’t consider myself high-functioning either.

But I know that the categories do have a sociological meaning, and that in various aspects of my life I get put on both sides of that sociological meaning. I have been officially labeled low-functioning for whatever it’s worth, and I don’t mean in early childhood. And on the net I’m regarded as high-functioning until proven otherwise because I can write well. I’ve been invited to otherwise “HFA-only” things by people who only know me from the net, and to otherwise “LFA-only” things by people who only know me in person.

And believe me, I would fight just as hard if there were a push to see “LFA” as the only valuable ones, or the only real autistics, or the most pure autistics, or the ones with the truly special gifts that “HFAs” can’t have, or anything else like that. And I have fought sentiments like that where I’ve seen them. Because they do exist. But they are nowhere near so rampant as the “HFA/AS” elitism I see all over the place. So I spend most of my time fighting that.

I think that my existence brings more meaning to the world than simply to pull the gene pool towards the really valuable people. I think that the existence of my friends brings more meaning to the world than simply to pull the gene pool towards the really valuable people. I think that the existence of people with Williams syndrome brings more meaning to the world than to serve as fodder for other people’s intellectual snobbery. And I think these things are true whether or not we hold jobs, or learn certain things.

The name of this blog is “ballastexistenz”. That means “ballast-existence”. It was once widely used in anti-disabled propaganda to try to weed us out of the human race entirely. The reason I titled my blog this, is to highlight that I’m fully aware that I and many others still hold that status in many people’s minds, and to expose that kind of hate for what it is. I don’t believe in ballast-existences. But most people so labeled, even those presumed to be unaware of it, become well aware in some way or another that we are regarded as useless ballast to be tossed away if possible.

That’s where you get people with Williams syndrome trying to rip their faces off. That’s where you get people like me afraid to think about what we look like. That’s the result of this garbage about what kinds of people are and are not useful in the world.

Unfortunately for Temple Grandin’s “ideal world,” we’re not going anywhere. As Eugene Marcus, who Temple Grandin probably also thinks is pretty useless, said, all people are real in the deepest sense of the word, there’s no such thing as a non-human human, even though many of us look, to say the least, non-standard. That sounds like a much better attitude to me.

Tags: templegrandin williamssyndrome autism hierarchies functioninglabels neurodiversity eugenemarcus hingsburger disability politics autismcommunities ethics

In Little Acts of Degradation, Cal Montgomery explains what Project Cleigh is and how people can participate by sending in descriptions of similar acts in their lives. Figured I should let anyone reading this blog know about it.

I’m going to send stuff in, but it’s difficult. First these things seem to occur so often I don’t know where or how to begin. And second — and this is one of those acts in and of itself — my main staff person is so determinedly apolitical that, every time one of these things happens, she frantically comes up with some reason that it really didn’t happen, or really needed to happen, or really wasn’t what I think it was, some reason that makes it the personal quirk of a person that day rather than an overall pattern, because she’s determined (and has said so) not to see certain overall patterns. So I’ve given up talking about these things as they are happening because in her I will as often as not find an excuser rather than an ally, and then I have two problems rather than one on my hands.

So it will be interesting to try to figure out which of these to type up, and then to type them. And I’d urge others with stories like these to send them to Cal for this project.

Tags: disability politics degradation discrimination raggededge calmontgomery

Someone just linked to first person singular piece, which seems like an appropriate title for it given that it seems to be one of those “emotionally honest” accounts that doesn’t examine where the emotions come from and whether they’re appropriate and so forth. This is how she describes finding out about autism:

Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. “Yup, it’s Autism, and it’s never going to go away.” I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist’s office. It’s one thing to harbour nagging suspicions; it’s quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong.

The first autistic people I knew, where the word “autism” was said about them (plenty of my family was autistic without using the word) were in nasty, horrible places with me. But they were not nasty, horrible people, and I never thought they should be some other kind of person. Many of us made friends and communicated with each other while staff were oblivious and considering some or all of us non-communicative and/or incapable of true friendship.

Maybe what I’m writing now mirrors something I wrote a long time ago, but that got lost when my blog crashed: “Lessons on inclusion from a segregated school” was the title.

Where I learned to appreciate neurodiversity was not in the abstraction of an Internet forum but in the undeniable concreteness of institutions for people society wanted to throw away. “Autism” was a word describing the people I found it easiest to communicate with for the most part. But in all of the forms of segregation that I experienced, there was a wide variety of people, and we were forced to deal with each other. And we did deal with each other, in good ways or bad ways, but there was no way for us to control who was there and who wasn’t. So we learned in one way or another to live with everybody.

Everybody meant people with diagnoses that most people are terrified of, as well as ones that are more socially acceptable. There were people with diagnoses of autism, mental retardation, schizophrenia, cerebral palsy, bipolar, depression, dissociation, conduct disorder, personality disorders, low functioning this, high functioning that, and probably anything else that could be thought of. Sometimes we drew lines, and sometimes we didn’t. Sometimes the lines were drawn for us, and we were warned in various ways not to cross.

I learned, though, to appreciate the variedness of people, rather than to regard it as a tragedy. And believe me, we were mostly the sort of people who are regarded as tragic. It’s not ignorance of the full extent of human difference, or what happens to the too-different-for-society’s-comfort, that makes me celebrate its existence. Some people write that it is, that people like me just haven’t seen or experienced these awful things, but the reality is that many of us have, we just differ on our opinions about it.

As a friend, Vanesa, told me — while bouncing off the walls quite literally, while about to spend the bulk of the next few months tied down in a room next to the one I was tied down in, while talking a mile a minute about several topics at once — “The reason we’re here is because we’re not cookie-cutter people. They don’t want us out there.” She later screamed about cookie-cutters in front of staff, who merely regarded it as disorganized manic speech. Words from a private conversation became our code words which became to the staff disorganized speech or echolalia. This is how you communicate around people who simultaneously don’t want you communicating and don’t believe you can communicate or have anything meaningful to communicate. And this — what she said — is also a perfect summary of neurodiversity.

Connection of this kind was frowned upon, was not the norm, but it was there. And it was there most often, for me, around other autistic people.

A purely personal sense of the word autism? I didn’t know what it meant, even when I was diagnosed with it. But it didn’t mean horror, when it did begin to have meaning. It meant people who as often as not inexplicably spoke my language. It meant the first people I felt like I could have two-way communication with on many levels. All of this occurring, oddly enough, inside the nightmare scenario of most parents: the institutions and special schools that really were horrible but that most mistakenly blamed the state of our bodies and minds for our presence in. People blame autism for those places but the existence of autistic people never created those places.

So when I hear the word autism, there are no kicks to my stomach. When I meet autistic people, I have no desire to turn them into non-autistic people. I know the worst things that can be done to us and I know that our being autistic doesn’t cause them. The idea that someone’s version of “emotional honesty” (because it seems to be that pattern, again) means saying how horrible it is that we’ll always be autistic… it’s not good at all.

Tags: autism neurodiversity beauty disability institutions emotion

It seems like there’s a couple ways of portraying autistic adults in most books on the topic.

We are either:

• People who think, feel, communicate, and understand things. Who need minimal support that is rarely outlined, and where books that do outline the support needed, outline primarily social skills instruction and training in learning various skills that we are assumed to be capable of learning. We may or may not know what’s best for us, but in this category we do more often than not and are considered at least partial participants in planning our own lives.
• People who may or may not be portrayed as thinking, feeling, communicating, or understanding, depending on the book. But who are portrayed in a paternalistic and often patronizing light. Other people decide what’s best for us, plan our programs (with perhaps a tiny bit of participation in minor decision-making, such as the famous “Do you want peas or carrots?” question), interpret our behavior in all sorts of bizarre ways, and do various things for us. We are portrayed in this context as needing much more support, but we are not viewed as very active participants in that support, and we are not viewed as capable of more than a tiny amount of learning.

The cause of this rant is the fact that I’ve been looking for a long time for a description of the kinds of services I use, so that I can figure out what services I do and don’t need, and then tell someone. Because so far, the sorts of things I have been told are:

• That I don’t need services at all (very rare).
• That I clearly need services, but other people will decide which ones.
• That I clearly need services, but only the ones that are not all that useful to me.
• That I clearly need services, but would be better off in some form of an institution.
• That I clearly need services, and by a mysterious process that nobody explains to me, these will be decided in my absence.
• That I clearly need services, and can even make decisions, but can only make the decisions that I am not competent to actually make, while not allowing me to make the decisions that I am competent to make.
• That I clearly need services, but that if I cannot articulate exactly which services I need, nobody has to tell me which ones are available.

I’m dealing with two agencies at the moment, who seem to have some kind of odd division of labor between providing services. The one that deals with physically disabled people is much more forthcoming about which services are available. The one that deals with developmentally disabled people (and the one that provides the bulk of my services) claims that nobody knows what services are available because it’s all individualized (but then proceeds to make many of these decisions for me, and often makes them badly to the point of endangering my health, and then tells me that there is a means of deciding which ones I want, but does not make it cognitively accessible to me).

So I’ve wanted a book that lays out, clearly, what kinds of things are available for people like me. I suppose I should explain that I fit neither of the two categories of books that seem to be out there (and that apply to the stereotypes of high-functioning and low-functioning, as well as the stereotypes about how people placed in each categor should be treated).

Because I am:

• Sometimes able to write eloquent sentences. Sometimes not able to use language at all. Rarely able to use speech to communicate.
• Sometimes capable of complex understanding or thinking. Sometimes incapable of understanding or thinking about more than the absolute most basic information (more basic than most NTs know exists).
• Generally capable of making the large-scale decisions about how I want to live my life. Generally incapable of making more detailed decisions in everyday life without a lot of time, effort, and planning, sometimes more time, effort, and planning than is available at any given time.
• Generally incapable of doing what get called “instrumental activities of daily living”. Only capable of some of what get called “activities of daily living”, and only some of the time.
• Capable of the kind of feats of balance and strange acrobatics that autistics are sometimes known for, if given the right triggers to action, but experience great difficulty with deliberate movement, motor planning, and sequencing.
• Sometimes only capable of either extreme of something — either a whisper or a shout, either frozen in place or moving very fast.
• Capable of very skilled and efficient thoughts, movements, words, typing, and/or complex actions within the narrow range that I am doing something in at a particular time, and incapable of doing anything outside that range.
• Capable of using words that I can’t understand, and understanding words that I can’t use.
• Good at communicating on a relatively narrow range of topics, but in many respects (including respects that affect my health) as good at communicating about some things as someone who cannot talk or type or sign at all.
• Not capable of learning much about many of the activities people try to force me into “skills training” for, but capable of learning things that are extremely important to learn and that nobody bothers to teach me.
• Given services I don’t need and not given services I do need, somehow all at the same time, because the services I don’t need are more convenient to staff and administrators.
• Less capable of many everyday activities than many of the autistic people depicted in the second sort (see above) of book, and more capable of certain kinds of understanding than many of the autistic people depicted in the first sort (see above) of book, but not agreeing with the split at all or the way people are treated based on the split, and not finding either way of doing things sufficient.

I am not particularly unusual in that regard. The stereotypes are, after all, just stereotypes. And I am not, even though the literature paints it that way, some kind of mystery or paradox. How I function is how I function, and just because it contradicts prevailing ideas of how people function, or isn’t always understood well yet, does not mean it contradicts itself.

I am, however, someone who benefits from a variety of assistive technology and modifications of the environment that remove barriers to my participation in things that non-disabled people are already not blocked from participating in. Most of this, both this conception of access and the assistive tech, I learned from disabled people, because non-disabled people were too busy telling me what I needed instead of showing me my options or explaining the system.

Which means that, statistically, there must be other solutions than the ones I keep being told about by professionals. But none of the books seem to list them in a form where I can point to “Here, this would be a good idea, and that would be a bad idea, and this other thing would be a good idea with some modifications.” And most of the books adhere to a stratification system and a very demeaning way of dealing with people based on that stratification system, that I can’t deal with. (Not to mention most of them rely on a very individual/medical model of disability, but I would right now deal with that flaw as long as I got the information I needed, which seems to be nowhere.)

So it would be nice to see a book that listed pretty much everything possible, including for people whose abilities shifted around, so I could at least tell what it is that people are doing and what would be useful for them to do. Unless they pull everything out of their butts each time, and there is no such description anywhere so they can continue to do this — which would explain a lot.

Tags: autism disability books communication hierarchies functioninglabels institutions services

I’m reading A Mind Apart: Travels in a Neurodiverse World by Susanne Antonetta. I had a gift certificate to a bookstore, and I picked it up because it had “Neurodiverse” on the cover, and because it referenced the Institute for the Study of the Neurologically Typical and Neurodiversity.com. It’s a book of musings by a woman diagnosed with bipolar, with one friend who is autistic and another who is plural. It’s supposedly about the value of neurological diversity to the human race. But I keep reading certain passages that are haunting me throughout the rest of the book.

In the introduction she says this:

Many things regarded as pathologies can be terrible, rendering a life as most people would define it — with things like autonomy and connection — impossible. Those lives are not the ones I’m covering here in this book. In many cases, though, things regarded as pathologies come with tremendous abilities, whatever behavior those gifts might come calling in. The Wired reporter notes that Ted Nelson drove like a maniac and wore a belt made of dog collars.

Then later in the introduction she says this:

I want to say at the outset of this book that there exist severe, low-functioning autisms and other cases, like untreatable manic-depressions (a place I’ve been but didn’t remain in permanently), that probably warrant the term tragedy. I do not address myself to those and would not have the hubris to declare anyone’s life livable for them. I write for myself and for those who do find a value, even a rich existence, in their mind ways, modified perhaps by treatment, but resonant still of what they are.

I keep thinking of those things throughout the rest of the book. They do not, as perhaps the author intended, warn me that she intends to be sensitive. They warn me that this is going to be a profoundly ableist book, and that the ableism is not going to be fully challenged. They warn me that this, like much neurodiversity writing, is a neurodiversity of the privileged. The ones who can say “Yes we may be weird, but don’t you need weird people like us even if you don’t need those other weird people?”

The author writes about the hubris of declaring anyone else’s life livable. She does not examine the hubris of starting from the ableist assumption that some lives, by virtue of disability, are not. She also does not examine the hubris of first declaring some people entirely incapable of autonomy and connection, and then judging the value of a person’s life based on her prejudices about what those two things mean. She does not consider what causes her to assume these things, nor does she consider whether or not other attributes might exist that are just as important if not more so. She talks about “a life as most people would define it,” but doesn’t question the way most people define a life.

She never says the word retard, or even its longer form retarded, but I keep reading it (in epithet form) between the lines (perhaps not in the author’s thoughts, but certainly shouting out at times in the pattern of prejudices that is mapped out) and somehow don’t think people who end up so described fit into her version of neurodiversity (unless we’re being described that way “by accident” in which case it’s probably okay, but the entire concept and the values around it are never questioned), which she defines in part at times by “intelligence” (in one part perpetuating the myth that a person needs extra intelligence to be multiple). She does explicitly exclude autistic people defined by others as low-functioning (she does not question that definition, nor is she apparently aware that two of the contributors to ISNT, myself and Shelley, the second being a woman who wrote some of the definitions she quoted, have been defined that way by professionals).

She says that the book is for people who already find a certain value in their lives. She sometimes questions the way the narrow range of people she includes as neurodiverse are taught to devalue themselves, but she does not question the way people labeled retarded, or low-functioning, or severely bipolar, or severely something-else, or tragic, or not having a life as most people would define it, are taught to devalue ourselves.

So as I read through the book, I am constantly aware that what she is describing is not really meant for me. Or for many of the people I care about. She might say that by virtue of saying this, I am not in the categories she means, but I know that to many people I am, and that she sets a default position of devaluation for those of us not in a position to say anything about it. If someone read this book, and passed me in the street, they would not value me any more than they already do, because they certainly would not stop to ask me if I counted among the narrow elite defined as neurodiverse by this book, and if they did I might not be able to answer. The minds of most people who meet me put me in the other category until proven otherwise. Devalued until proven valuable is a horrible way to do things, and this book reinforces that.

But most books that manage to get widely published, and movies that manage to get widely viewed, I have noticed, challenge only one idea at a time. Autism is a World challenges the assumptions that certain autistic people are also “retarded,” but does not challenge a myriad of ableist assumptions that make their way into that movie untouched. Thus people say “This challenges my stereotypes! Wow!” and go on with most of their prejudices intact and the politics of their position unexamined entirely. A Mind Apart only challenges the devaluation of people who are, at this moment, of “almost-normal” status in some people’s eyes, or have certain features that the vast majority of society considers redeeming despite (not because of, or along with) their eccentricities. Both Autism is a World and A Mind Apart view things on primarily an individual or medical level, and when society is brought up in A Mind Apart it’s more often in the sense of biodiversity in an ecosystem than in the sense of a system of power. Viewing these things as individual allows the worst to continue while people get only slightly uncomfortable (soon resolved by adopting whatever line they think absolves them of their discomfort) and only slightly changed.

Part of the individualization process is also to value “emotional honesty” (with the broader sources or the appropriateness of the emotions not always examined too closely) over many other things. Such that if I were to confess assorted forms of self-hatred, it would be okay, but examining the sources of that self-hatred and concluding that the self-hatred is a product of ableism and that all of this affects the way I treat other people, the way I respond to how people treat me, the advantages I and others have and don’t have, how to change all of this, and so forth, would not be as okay (but would be much more interesting and productive). Much of this book reads as “emotionally honest” but skimming the surface of many other issues.

To go further than that, into ableism, into the ways society is set up to put certain people at a disadvantage, into the ways we are indoctrinated from birth into certain ways of viewing people (all of which go all but untouched throughout this book) would challenge too much at once. Would be too powerful. Would be something I’d have loved. But whenever the book approached those too closely, it veered back to the individual, often explicitly marking out the territory it refused to stray into.

So I suppose, a challenge to find and read at least some of the books/articles/websites that I’m about to link to, and apply the concepts to a broader definition of neurodiversity than the most common pop-culture one these days:

First Contact – Charting Inner Space: Thoughts about establishing contact with people who have significant developmental disabilities by Dave Hingsburger (About $5 USD — also try pretty much any of his other books)

When considering making contact with people who have multiple disabilities — those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state — there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness and then, if you examine the feeling long enough, terror. […] Well, back off. This isn’t about you. […] The temptation is to engage in an incredible waste of time and psychological energy — spending time imagining what it would be like to be you inside them. How egocentric is that?

Critic of the Dawn by Cal Montgomery (web article)

There are people who call my uncle Bruce a threat to public order, people who call my sister Mary a whining opportunist, people who play “divide and rule” by attacking one or another representation of disability and encouraging defenses along — but never across — the traditional fault lines. And the fault lines that divide our community — the distinctions between those whom we treat as blocked by barriers and those whom we treat as innately limited — the very existence of the fault lines troubles me.

Past, Present, and Future by A M Baggs (web article)

Treatment didn’t get me out of an institution — if that were true, I’d never have left one because I don’t have the skills many think people need to do so. Institutions don’t grow up around people because they’re like whatever sort of person I was. People get put in institutions by other people who think that the only way certain people can live is inside of them.

Confessions of a Non-Compliant Patient by Judi Chamberlin (web article)

I wish I could show you the picture that hangs on my office wall, which inspires me every day, a drawing by Tanya Temkin, a wonderful artist and psychiatric survivor activist. In a gloomy and barred room a group of women sit slumped in defeat, dresses in rags, while on the opposite wall their shadows, upright, with raised arms and wild hair and clenched fists, dance the triumphant dance of the spirit that will not die.

When I Woke Up by Rus Cooper-Dowda (web article)

My point is that the medical and legal staff of that world-renown hospital were wrong and didn’t listen and made startling assumptions about the quality of life for the disabled community I had joined.

In their eyes, I only had two options then — full recovery and a lovely hospice death. I did spend time in a hospice against my will fighting to get to my OB-GYN appointments — but that is the stuff of another story. Leave it to say that it was beyond them that most of us — especially the disabled community — live full lives in between physical perfection and death.

Letter to a Baby Who was Thrown from a Bridge by Astra Milberg (web article)

There are two things you need to learn. First, you come from a group of people who have a history of being thrown away. We have been thrown out of families into institutions. We have been thrown out of schools into special classes. We have been thrown out of lives of employment into lives of poverty. And people like you and me, doctors don’t really want us to be here in the first place. But we, people with disabilities, are glad you are here and welcome you to the fight.

And I, a woman with Down Syndrome, want to be the first to give you the second bit of news. Yes, you come from people who have a history of being thrown away, but you also come from a group of people who have learned how to survive.

Mouth Magazine and Ragged Edge Magazine (websites)

I suppose after reading some of those things, it should be obvious that I, at least, believe that the concept of neurodiversity runs much deeper, requires more fundamental changes, and applies to many more varieties of people, than the easiest-to-swallow (for those not excluded by them) versions allow for. I have no wish to watch myself (at any point in my life, whether currently, in the past, or in the future) jettisoned from the ranks of the valuable so that people who are already very close to the valuable can expand the range to include themselves (and maybe their friends) as they are now, but no further. There’s a lot positive in this book, but I am finding that it does not go far enough, does not question enough, does not dig deep enough, or broad enough, for my preferences. And leaves me wondering about where I fit in this vision of the world.

Tags: books neurodiversity autism autismcommunities outsideperceptions disability politics power beauty hierarchies shinyhappyliberals functioninglabels psych

I’ve watched several people I knew die in the past few years, and I’ve watched the reactions of the people around them. Which has caused me to want to post something about when I die (I am not planning on dying in the near future, I just wanted it said).

When I die, don’t feel afraid to discuss what you didn’t like about me, or what I had to say. Don’t turn me into someone perfect, someone I am not and never was, someone nobody is. Remember me as I am, not as you wish I was. Discuss the merits and problems of my ideas and try to improve upon them rather than letting them stagnate as if they have died with me. I am a human being. I am good and I am flawed, I am happy and I am angry, I am reasonable and I am unreasonable, I am right and I am wrong. I try, more than almost anything else, to do the right thing, that does not mean I always succeed.

When I remember people who have died, I remember them the same way I remember people who are living. Death doesn’t make me cut off some bits of them, exaggerate other bits, and fabricate bits that never existed. Don’t make life difficult for people who, like me, will remember me in death the way they experienced me in life. Don’t put forth an idealized (or for that matter demonized) version of me and make people afraid to remember the real me.

If you believe in heaven, and believe that I have made it there, don’t depict me as “happier now” because I’m not disabled anymore. I once read about a deaf girl who was told that she would love heaven because she would be able to hear. She replied, “In heaven, God will sign.” Any time I try to imagine heaven I come up with some equivalent to that, rather than a sense that I will be made into an unrecognizable non-autistic mold. It is humans who think that the diversity of the way we were created is a defect and that God needs to make us all identical for us to be equal. It is also humans who think “Better dead than disabled.”

But theological speculation aside, please remember me the way you thought of me when I was alive. I find it disturbing how the memory of people I knew and cared about is turned into a monument to people who didn’t exist, not as I knew them, not as the same people spoke to and about them when they were alive. And for me, the distortions designed to evoke excessive unmarred beauty are ugly and the intact truth about people is beautiful.

‘It Could Happen To Many Of Us’ is the title of an article at Ragged Edge about a guy diagnosed with bipolar, who wasn’t a terrorist, but got mistaken for one, and was shot and killed. I read it, and I’m once again aware that I’m one of the “many of us”. My repeated near-misses with law enforcement, all outside of such volatile settings as airplanes, have made me cautious about leaving the house on my own.

This past year, I decided that it was a pleasant, slightly-drizzling day, and that I would wait outside for my staff to come. I took my cane, rather than my wheelchair, because it was only a short distance. I didn’t take my keyboard because I didn’t want it to get wet. I sat down and enjoyed the day. Soon, though, people were walking up to me and asking me if I was okay. I nodded, and they went away. But then the police came. They also wanted to know what I was doing there. Fortunately, the second policeman to arrive knew me, and my staff drove up while they were still questioning me.

But this wasn’t the first time, or even the last time, that my appearance (autistic, ticcy, generally unusual) has aroused “concern” among good citizens.

In my many encounters with the police, I have sometimes been viewed as a potential threat, who needed to be locked up for the protection of other people (even though I was not hurting anyone). Other times, I have been viewed as a threat to my own safety (because I dared to leave the house looking like I look — should have known better, apparently), who needed to be locked up for my own protection. (Which is why I am unfortunately waiting for the above story to be used as an excuse for forced drugging rather than a re-evaluation of prejudices.)

I have not yet been viewed as a potential terrorist (except perhaps by Lenny Schafer). But given the descriptions of potential terrorists (who are to be shot in the head, apparently) that are being circulated, it would just take being in the wrong place at the wrong time, given that the descriptions would pick up many autistic people and people with other neurological oddities. Which is why I continue to never leave the house alone, despite being very fond of taking walks and exploring places, and why I dread air travel (in which, for an inspection on a recent flight, I was forcibly separated from the support staff who could explain my behavior to anyone) altogether.