Daily Archives: June 25, 2006

NPR show time seems definite now.


It looks fairly definite. They’re doing a show on All Things Considered tomorrow (Monday, June 26), and you can find the times and stations on this website.

Interviewed should be Michael John Carley, Jim Sinclair, me, and possibly others.

The blurb on the site says “Life can be difficult for autistic children. But imagine being diagnosed as autistic when you’re an adult. Many autistic adults say they aren’t hoping for a cure — just acceptance.” I want to clarify for anyone who comes here from there, in case it isn’t made clear on the show, that neither Jim Sinclair nor I were diagnosed in adulthood, but that they might be talking about Michael John Carley or other people who were interviewed.

“On Edge” by Cheryl Marie Wade


God forbid we human beings should ever have to get up close and personal with our unwieldy, messy, smelly humanness. In every way possible, this culture’s rules and values distance us from the realities of our own bodies in all their glorious imperfection. Just flick on the TV any time of the day or night and you’ll be bombarded with messages about the necessity of looking perfect and smelling better. It’s presented not as an option, but an obligation. Of course we want to hasten death; of course we want to make it easier for Cripples to die. Out damn spot. Out.

I don’t think it’s just coincidence that this urgent, zealous drive to give us more ways to opt out of life comes at a time when more and more of us are visible, living in community, being “in the face”, so to speak, of able-bodied assumptions about normal. And not just the us that can almost pass as AB, but those of us whose bodies are wildly uncontrollable, we of the drooling, spazzing, claw-handed variety of Cripple. And instead of trying to fade into the nooks and crannies as good Cripples of the past were taught to do, we blast down the main streets in full view, we sit slobbering at the table of your favorite restaurant, we insist on sharing your classroom, your workplace, your theater, your everything. The comfort of keeping us out of sight and out of mind behind institutional walls is being taken away. And because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.

(Emphasis in the quote is mine.) That’s a quote by Cheryl Marie Wade in On Edge, that describes a frightfully real phenomenon. When it is not an option to lock us up and separate us from society (and it still often is, but it is for less of us), people, with the same prejudices that lock us up to begin with, try to justify our quick-as-possible death.

Moreover, people are terrified of the things I described in my last post. Terrified in particular of having bodies or minds that don’t stay tidily in control, in a society that is right now far more of a control-freak society than it was when Wade wrote that article.

When Wade (who also wrote the great poem A Woman With Juice) wrote that article, I was still in the out-of-sight out-of-mind category that she describes. Now, I’m not. But I think a lot of people would be more comfortable if I, and everyone else like me, were. I don’t think all of them think of themselves as hating us. I think we make people highly uncomfortable merely by existing in their presence. We bring up too many questions, remind people of too much, and break too many rules devised for a society being run without us. And, as she mentioned, since nobody is willing to admit their discomfort, they do a lot of very nasty things while distancing themselves from the nasty things they are doing.

That’s of course not the only reason. Wade goes into many other reasons in the article. But I’ve noticed that merely being plonked into a society that is not designed for me, that in fact is actively hostile to people like me, is not the same as living in an inclusive society. It’s not the same as living in a society where people have shed their prejudices about us, or where we have enough power and respect to avoid some of the more awful fates (including re-institutionalization) that are accepted for us by others. It’s just a change of address. And it’s just the beginning.

I have to wonder how much of these attitudes are behind the widespread acceptance of the murders of Tracy Latimer, Charles-Antoine Blaise, Katie McCarron, and so many others, and this latest attempted murder of a little girl with cerebral palsy.

Someone pointed out in my post about Katie McCarron that it’s not just beautiful, young people who shouldn’t be murdered. It’s also those of us who aren’t cute anymore, those of us who have ‘severe behaviors’, drool, need help going to the bathroom, or whatever else is different about us. I think people are more comfortable with the murder of a disabled person than a non-disabled person, but also more comfortable with the murder of one of the disabled people with an ‘undesirable’ body than those who are closer to standard-issue. A lot of effort has gone into distancing Katie McCarron from a stereotype that she has never come close to fitting. But those of us who do fit it more than she does (of which I’m definitely one), are real people too. The misplaced discomfort and disgust we are greeted with should not rule our life and death.

Fear of disability is not what it seems.


Two nights ago I had a long conversation with a friend.

She was in bed because she’s got a pressure sore forming on her butt. I was lying on a mat on the floor because I couldn’t hold my body upright and think at the same time.

We were talking about the stuff that normally gets called disability, or impairment, or whatever the current term is. The differences in our bodies, that are medicalized, and defined as horrible fates worse than death and so forth.

We were talking about our total lack of fear in the idea of acquiring any particular currently-pathologized condition.

She talked about how “chronic, intractable pain” is an everyday reality for her, and it’s only going to get worse with time. I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity. I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.

I started laughing, because that seems like an absurd idea to me. My friend said, sarcastically, “Oh, but you’re laughing. If you’re laughing, you can’t be in any pain.”

Then we got into migraines. I’ve had one for a few years straight now. My friend said, “It’s documented that people sometimes kill themselves over migraines, so that’s got to be considered one of the nastier forms of pain.”

My friend recently had a knee injury and was unable to get out of her wheelchair at all (normally she can stand for brief periods) without extensive assistance. She talked about how that isn’t a particularly awful thing in and of itself. She also once went through extreme spinal surgery and only got a day’s worth of pain drugs afterwards.

I freeze in place on a regular basis, sometimes to the point where even my eyes are not under my control, right down to pupils staying at a fixed, large size and my eyes not moving at all. I know very well what it’s like to have zero voluntary movement, and total awareness of surroundings, and I’m not afraid of it.

I also know what it’s like to not comprehend anything going on around me, to be unable to form what most people consider thought (although I think their definition is far, far too narrow to encompass all thought), to “lose” extended amounts of time because things were not encoding into memory, to understand things only on a perceptual level with no abstraction or what non-autistic people would call “comprehension” or “cogitation”, to understand things only in the moment and not have a continuous memory going on, to understand bits and pieces of things on bits and pieces of different levels, and so forth. I know what it’s like not to even be able to put together the intent to “understand” things in a relatively typical way, because the knowledge of that intent simply isn’t there, all that “makes sense” is sensation.

I even know what it’s like to have seizures every few seconds. And from the effects of various supposedly “anti”-psychotic drugs, I know what it’s like to hallucinate and lose touch with reality. I know what it’s like to vomit several times a day, or continuously for several hours in a day. I know pain so intense that I can’t move, and can’t think of anything other than pain.

These are things I know. I know them short-term, I know them long-term. I know them as states that I am able to partially exit for certain periods of time, and I know them as states that I am mandated by my body to stay in until they’re over, if ever. I know the extreme fluctuations in all of these areas that I go through daily, and the gradual moving from one area to another that takes place over time. These things are or have been significant parts of my life. My friend and I talked about all these things from my life, and all these things from her life. Between the two of us, we have internal-body experiences that cover a pretty wide range physically and cognitively. Neither of us are afraid of physical or cognitive disability, of pain, of confusion, of immobility, or of illness. We’re not particularly afraid of even the things considered the most devastating.

There are things we both fear, though. And they have nothing to do with the internal experience of any of these things.

I fear being put in an institution, of any kind, whether a large institution, a group home, a nursing home, or a psychiatric ward. I fear boredom because people might assume I’m not there and park me next to a blank wall for years. I fear people not bothering to prevent or treat things like infections and pressure sores. I fear people who claim to love me deciding to kill me to spare me the unendurable suffering they imagine I am experiencing. I fear bad staff. I fear being assumed dead or unconscious when I freeze (this has happened). I fear not being given a workable communication system when one is available. I fear being treated as a non-person.

The trouble a lot of people seem to have, is they can’t distance these legitimate fears, from fears of the state of being itself. They act like the above are a natural consequence of being configured in a certain way, and that the best way to avoid that is to prevent at all costs that configuration, instead of preventing at all costs those things from being able to happen to people.

My friend and I are not afraid to acquire various conditions that are currently pathologized. We’re aware we’re likely to acquire at least some of them within our lifetimes, even if only in old age. We’re afraid of discrimination, including deadly forms of discrimination. The solution here is not to fix our fear or “acknowledge our feelings”, but to fix the problems that cause legitimate fear.

The trouble I have in talking about these things, is that for people who do not adequately separate out how a person is from how they are being treated, this sort of thing often results in responses like “Oh how horrible, I or my child or someone else is in all this danger, this is a horrible horrible fear, how can we fix me or my child or whoever until they won’t be in all this danger?” Wrong answer. Work to fix the danger, or you will have solved nothing at all except temporarily your own emotional state.

The trouble is, people make decisions, including policy decisions, based on these nebulous fears of being disabled, rather than the real and concrete situation that disabled people are treated like crap. People actually believe that their feelings on this are neutral in nature, and of course, since they are feelings, impossible for anyone to validly question. But these feelings come from somewhere, and without looking at disability as a political thing rather than an issue of personal individual suffering and uselessness and whatnot divorced from any context, we will continue to have awful things happening to us all the time, and people will continue to fear becoming like us.

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.