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.

I’ve been threatening this post for a long time, so here it is. ;-) Several other posts have alluded to things in this post, but I’ve finally written it.

Links from Mouth Magazine’s website (they have a lot of stuff on do-gooders):

The Trouble With Do-Gooders

“Care is always voluntary. You can’t buy it, you can’t manufacture it or produce it,” McKnight reminds us. Sometimes hookers or Do-Gooders will fake it, if you pay them good. I forget, is it in hospitals or with hookers where you’re supposed to put the money on the bed?

When their car payments, rent, insurance premiums and careers come out of helping, maybe their altruism’s not really what it’s about. It’s an exchange of goods and services for money that we’re talking about. You can call that “care,” but that would just be the standard PR in my book.

My Contaminated Smile

My workday started when the nurse handed me the duty list. It was my job to do what was on that list and also to answer the call lights. I pitied those poor people. They needed my help. I had to do something to make their lives better: adjust the bed, reposition them, open the curtains… and never know or ask if that’s what they wanted at all.

Completing the duty list was helping the patients. Answering call lights was not my idea of help. When I saw a call light flash above a patient’s door, dread and fear came over me. A call light meant that a patient wanted something unknown, something not on the duty list, something I might not know how to do, something I might not want to do.

If a patient dared ask for any of the above, here came The Smile. Tilting my head 35 degrees to the right, I contorted my face into a large, painful, cheek-to-cheek smile, exposed my teeth, glared at them and said “I’ll help you in a little while. Other patients need me right now.” Then I could get back to the real helping.

Helping reduced suffering and made me feel good. After I had finished acts of help, I waited like a vulture for expressions of gratitude. I’d helped, hadn’t I? When thank-yous weren’t forthcoming, it was clear to me that those people weren’t even human enough to be grateful.

The Great Wooster High School French Fry Conspiracy

On March 21, 2000, Brianna advised me that the teacher with the french fry issues, Ms. W R, works or helps in the lunchroom and she refused to give Brianna french fries although it was her choice of lunch food.

Brianna has attempted to avoid this teacher’s line so that she may continue to have autonomy in her lunch routine. Today, March 23, 2000, this “teacher” threatened Brianna in the lunchroom, saying, “This is the last time you are going to sneak french fries and a corn dog by me again! Tomorrow you are having soup. I’ll have soup with you.”

Because Brianna has previously been locked in closets by “teachers” at both a Washoe County elementary school site and a Washoe County Middle School site, Brianna has a very real fear, based on solid experiential knowledge, that she is in danger.

(The student described in the above article then faced retaliation that is described at the bottom of this page.)

Safety Is Dangerous

One of my best friends is a safety engineer who periodically goes on a prolonged rant about do-gooder safety. His primary points are (1) that EVERYONE is “safer” with a butt full of Thorazine and in four-point restraints, and (2) that do-gooder safety displaces the real safety issues. Real safety issues include wheelchair lifts that are designed with human factors of use in mind and negative pressure rooms that keep the air moving in the right way.

Other Links:

The Danger of Do-Gooders

But is there really anything wrong with having a moral sensibility which includes patting oneself warmly on the back more than once in a while? Aren’t we talking about vanity here – and if we are, so what? Excessive self confidence seems to be an important ingredient on the road to success in many other professions. Beautiful people are irritating but harmless, surely? What is different about people who work in special needs?

The problem is really to do with honesty. One of the principle motives for lying is to protect our self-esteem – to stop ourselves looking stupid, incompetent, ignorant and out of our depth. Enter a collegial professional groupthinked into maintaining an excessively high level of self-esteem, and here is someone prepared to lie at the drop of a hat. Equally, a key worker overly concerned with being a fantastic human being is unlikely to admit being fallible – and say those horrible words, “I don’t know” (or mean it).

Hell-Bent on Helping: Benevolence, Friendship and the Politics of Help

Professional caretakers are made, not born. How does it happen? Put a third-grade “helper” next to a third grade “helpee”. Add a sizable amount of adult approval, and there you have it.

It is not entirely thrilling that kids who take part in friendship circles during school go on to careers in human service. Don’t misunderstand. Lots of wonderful people choose this profession. However, an unfortunate result is that lots of children and adults with mental and physical handicaps have legions of professional caregivers, but no friends in their lives. We must guard against merely creating another generation of “professionals” and “clients”, with the former group seen as perpetually competent, and the latter, perpetually needy.

One of the above articles, all of which explore do-gooderism from different angles, defines a do-gooder as someone who confuses doing the right thing with feeling good. That, on its own, seems to lead to all the rest of the problems that a do-gooder attitude creates.

One of those problems is that a do-gooder will generally stop doing something once it starts getting past a certain level of unpleasantness. And the right thing to do, is not always a pleasant thing to do, or even a safe thing to do, and it can even be so unpleasant that the thought that it is probably the right thing doesn’t make it pleasant enough to be worth it for the “good feeling” it supposedly generates.

I’ve done things that I’m fairly sure were right (or close to it), but that terrified me. Or genuinely inconvenienced me (not just something that looked inconvenient but that I was really fine with). Or took away from things that I would have rather been doing. Or bored me. Or made me look really bad to both people whose opinion mattered to me and people whose opinion didn’t. Or endangered me. Or forced me to admit mistakes. Or any number of other things. I’ve seen other people do things they were fairly sure were right (or close to it) in the same kinds of situations and I have been very glad they have.

Do-gooders don’t want to be bored. Or scared. Or genuinely (rather than just outwardly looking like it) inconvenienced. Or looking bad to people. They won’t do the right thing when it actually hurts (rather than just looks like it hurts), and they might just do the wrong thing because it makes them feel better. Not that the right thing to do is always painful, or that it never feels good, or is never fun — because it can go either way — but that do-gooders will actually gauge whether something is right on whether it is causes them sufficient feelings of pleasure or strokes their ego enough. And they generally won’t venture off of safe ground or stick around once the going gets too rough for their personal emotional payoff to be worth it.

A related aspect of do-gooderism was summed up very well by a friend: “I wish my staff would quit being so damned helpful, and start being useful.” Some of her staff tend to rush in and try to change things in ways that they think make things better, no matter how many times that she tells them they make things worse. For instance, they often move things out of her reach because they look “more orderly” than when she puts them within reach, or tuck in the ends of her bedsheets because they look “neat” that way despite the fact that she then can’t maneuver properly in bed without assistance. In one of the above articles, someone talks about a staff person who loves “helpfully” making French toast when he himself wants to eat bagels. It makes staff feel good and helpful to do these things, but the things don’t necessarily tie in well with their clients’ wishes or access requirements. The “feeling good” part overrides things like usefulness and job descriptions.

Wanting to feel good all the time while doing your job can also turn into cutting corners. Cutting corners is a very serious problem when your job directly affects another person’s well-being, no matter what the job is. It happens all the time in human services. And as a person who is both part of a highly disregardable class of people (developmentally disabled, unemployed), and someone who often lacks a means of effective communication (require technology to communicate and may not always be able do so even then), I can say that people like me (including those even more disadvantaged) are among of the most convenient corners to cut.

I used to have a staff person whose idea of giving me services was to take me to Carl’s Junior, plunk my wheelchair in a corner, buy me lunch, and chat with her friends who worked there until her shift was over. One day, I had almost no voluntary movement. I had peed on the couch I was lying on, had been lying in it in exactly the same position for hours, and was in the kind of nasty pain that precedes pressure sores. So she couldn’t take me to Carl’s Junior and chat with her friends. Once she saw that I had no way of communicating with her other than screaming, she let loose with a constant barrage of verbal abuse alternated with sadistic teasing, told me that it was too inconvenient for her to clean up my urine so she wasn’t going to, and went home. My situation required her to do actual work and she didn’t want to deal with actual work, so she took it out on me.

That may be an extreme example of cutting corners, and the woman was something worse than your average do-gooder, but the amount of times I have seen that general kind of thing suddenly happen when it became clear that I had no means of talking back, convinces me that cutting corners is as commonplace in the “helping professions” as anywhere else, that many people will do it as much as they can get away with, and that do-gooders are among this group of people. And that ability to get away with it often hinges on the social status of the people being screwed over by it.

Someone in another of the articles described his autistic son being taken to school by a do-gooder. This do-gooder cut corners by failing repeatedly to make sure that his son would not be able to jump out of the car. When confronted about it, then on top of the initial cutting corners, they lied about what had happened, because do-gooders also won’t admit when they are wrong (it destroys the saintly image of perfection).

Not admitting they are wrong is one of the things that can make do-gooders especially dangerous. When this happens in extreme forms, it can take the form of an entire web of lies designed to protect their image, no matter how many people get hurt.

This happened recently in a struggle with my local housing authority. They were doing something that hurt tenants (and probably killed a few), but that didn’t fit in with their beautiful shiny image as friends and helpers to the poor and oppressed everywhere. People had been complaining for years. Instead of changing what they were doing, they simply denied that it was happening and assured everyone that we were safe no matter how many of us got hurt. When we tried to speak to the mayor, he did not even listen to our complaints, but simply assured us that the head of the housing authority was a wonderful man and that we should be grateful for what we got and not “do this” to him (at that point two of us were living on the streets because we could no longer safely breathe the air in our apartments). In the end (and only after public embarrassment — and this was after years of other people complaining directly to them), they fixed their construction techniques to the point where the air in here is now breathable, but acted as if they had been doing it right all along and those of us who complained were still somehow bad.

As someone else involved in this put it, this is what happens when a person or organization pays more attention to their reputation than to what they are actually doing. Do-gooders often fall into this trap and the result is to feel that they are something close to wonderful and perfect, and anyone who complains, is not really being hurt by them, but is just a bad person in some way. (Hint: Nobody — nobody — is so wonderful and perfect that they never hurt someone.) I was shocked by the mayor’s repeated assertions that the head of the housing authority is a “wonderful man” and that we were “ungrateful”, because no matter how wonderful the guy is (and, as an aside, he really isn’t) and how much actual good he’s done in the past, it wouldn’t change that something going on now in his company was hurting people. His wonderfulness or lack thereof wasn’t the point, but the collective ego of the housing authority became more of the point than the welfare of the tenants. (I once made a friend promise to please smack me hard if I ever decide that I’m that infallible.)

It’s also common for do-gooderism to show up in the kinds of help that are made available to people. Many parts of the “helping systems” have pre-designed programs with a pre-packaged, ideal client in mind. Nobody really fits that pre-packaged client, but some do more than others in certain ways. My own encounters with pre-packaged programs have often involved a clash between programs designed for people with a relatively static set of abilities, and the fact that my abilities (intellectual, perceptual, motor, and just about anything else) are in constant unpredictable flux.

This kind of flux is common for autistic people. It is common for people with chronic pain conditions where pain can vary greatly one day to the next. It is experienced by people with autoimmune diseases like MS that can involve flares and remissions. It’s even experienced by non-disabled people, in less dramatic form, when they are sick or stressed out.

The “helping systems” don’t often plan for this stuff. But they have a whole other plan. Full of things they believe will help us, and things they feel good about doing. This is the stuff that we are supposed to accept and even feel grateful for. (Billy Golfus does a great job in one of the above articles, of dismantling the whole idea that this is a caring/gratitude interaction rather than a business interaction, and further dismantling the popular idea that we as disabled people are truly the customers in this business interaction.) Do-gooders get to define what is and is not help, and recipients of said “help” who are less than grateful for said “help” are considered to have suspect judgment and character.

Do-gooders can take the easy way out by sticking to these plans they have for us. If we don’t fit the plans, it is our problem, not theirs. Often, this turns into a perverse situation where a person is receiving a number of services they don’t need and failing to receive services they do need.

Here’s a perfect picture of that, in Mouth’s Who’s In Charge? (Mouth has a lot of great stuff on do-gooders). They show a picture, taken at a cancer camp, of a boy with no legs on a skateboard, and a woman “helpfully” offering her arm while smiling at him. The boy knows that if he grabs her arm, he will lose his balance and fall. The woman doesn’t know it. If he needs other assistance, she isn’t giving it, because she’s too busy offering her own version of “help”. That’s a big chunk of do-gooderism in a nutshell.

In all these ways, do-gooderism turns into a sure pathway to corruption. Many disabled people have to endure the results of that corruption every day, because it is rampant in the “helping systems,” which do-gooders tend to flock towards. I suspect any other group of people afflicted with large quantities of do-gooder social workers aimed at them has to endure this corruption too. Not all people who work in this system are do-gooders, but so many are that it’s almost astounding to come across the ones who aren’t.

Do-gooderism of course isn’t always an either-or thing. There’s not always do-gooders and non-do-gooders with a sharp dividing line. Anyone can develop do-gooder tendencies, or have do-gooder type urges crop up at inopportune moments. I’m not particularly do-gooderish most of the time, to my knowledge, but I do occasionally do something to feel emotionally like I’m doing something useful, rather than because it’s useful — most people are at least somewhat indoctrinated into that kind of thing. It becomes very serious, though, when a person ignores the way reality smacks them around after doing things like that, and continues to do things primarily from do-gooderish (which are actually basically very selfish, despite their veneer of altruism) motivations.

The fact that do-gooderism is selfishness masquerading as altruism, is important. People often think that a backlash against do-gooderism is a backlash against selflessness. Do-gooderism is almost as far as you can get from selfless, but it is very good at looking selfless, and at making detractors look like people who just don’t like that people help each other. That people help each other, should genuinely help each other, is a fact. Do-gooderism is an obstacle to true help (and an obstacle to a whole lot of good things that it pretends to be), and objections to do-gooderism are often from people who know the difference between do-gooderism and the real thing.

What do I tend to look for in staff, in hopes that they aren’t do-gooders?

• People who can laugh at themselves and can accept comfortably when I laugh at myself.
• People who can accept that the system is frequently screwed up, and don’t feel the need to defend it when it hurts people.
• People who are unwilling to bend the rules to get away with things they shouldn’t, but willing to bend the rules when the rules are unfair to or hurting clients.
• People who primarily learn from their mistakes rather than lying or defending them.
• People who are clearly not just basking in the glow of their own wonderfulness.
• People who treat me with just as much respect when I’m immobile or screaming and banging my head, as when I’m typing out complex thoughts.
• People who, if they view me as “higher functioning” than other clients, treat others just as respectfully as they treat me, or, if they view me as “lower functioning” than other clients, treat me just as respectfully as they treat others. Or who, better yet, don’t make such crude comparisons at all.
• People who accept that I probably know my own brain and body better than they do, and that corrections are not meant as an insult to them.
• People who may like when they have a nice social relationship with a client, but who are primarily expecting that they will do their job and that any given client may or may not like them on a personal level.
• People who accept that everyone — every single person, including them, including me — operates on the basis of at least some prejudices, and that when these prejudices turn out wrong, the best thing to do is change them.
• People who understand that the relationship between staff and client is a relationship of power and privilege as much as a job and that this will at some point come into play.
• People who seem to act in genuine ethical ways, rather than either recite rigid ethical codes/jargon (Social Role Valorization, Person-First Language, etc) that they have been taught in staff trainings, or disregard ethics altogether.
• People who do not seem to have an overriding emotional need for clients to need them.
• People who accept that the messiness of real life demands creative and not-always-adequate solutions, but who at the same time do not invoke that messiness to excuse doing something truly wrong.

Of course there’s no formula for this. Reality tends to screw up even the best of formulas.

Nobody’s perfect, and nobody’s going to be all those things all the time, human nature being what it is. But those things are a good start. Even my favorite staff struggled with these things. What made her good at her job was the fact that she did and does struggle rather than giving in to whatever seems easiest. I was impressed when I first met her by the fact that she seemed to be the sort of person who, when she screwed up, genuinely learned from it. That’s the kind of person I want to be, and the kind of person I like to be around. That’s what I like so much about Dave Hingsburger’s writing, that he doesn’t gloss over that particular struggle, but highlights it, and changes his mind when he thinks he’s been wrong (I am told by more than one person who knows him, that he doesn’t just write like that, but behaves like that too).

Do-gooderism is one of those things that it’s useful to learn about, because it’s useful to know what traps not to fall into, or to dig yourself out of when you fall into them. And it’s also useful, when you’re on the receiving end of it, to understand what it is you’re looking at.

The agency that provides me services has an on-call team, that is supposed to call and remind me to take my medications at night.

This is also the team that handles crises, including situations where a person is potentially endangered by not having staff that day. There was awhile this fall when I had a bad migraine (okay I still have the bad migraine), was vomiting a lot (okay, that’s still happening too, although I’ve got meds to stop it before it gets as severe as it was before), and was getting dehydrated (which I’m already at risk for, for a number of reasons). And since dehydration wasn’t listed in my file as a major risk, this was being overlooked in the on-call team’s dealings with me. (At that time, I often could not drink water without physical assistance.)

I repeated to them a number of times, as did my then-roommate (who is disabled herself and could not assist with this), that I really needed to have assistance with water and that dehydration was a major priority. Finally when I had a staff person who got migraines herself and knew how bad they can be (it seems that a lot of the world thinks “Oh just a headache”), she convinced them to put something about dehydration in my file.

Which was all well and good at the time. And it would still be well and good if it were being used in a practical way. But there is something to practicality that seems frequently missing in this field.

Because now I get these calls at 10:30 at night, as I just got one a few minutes ago. And the caller innocently asks me to do something on the order of “Take your meds and drink lots and lots of water.”

Practical problems with this:

1. I can’t drink an entire day’s allowance of water at once and expect to actually be fully hydrated by it.
2. If I drank a full day’s allowance of water, at 10:30 pm, then I would certainly have to get up and pee in the middle of the night, which would throw my sleep schedule off, which affects my health in a number of other ways.
3. If the direction to “drink lots and lots of water” is meant to be remembered longer, this doesn’t work functionally for me. (I similarly used to get calls at 9 or 10 pm saying “Remember to take your medications in an hour.” If I could remember and do things like that on an hourly basis, I probably wouldn’t need the phone call, and would probably need significantly fewer services.)

The way things seem to work in this system, though, is it needs to look on paper like they get what to do. I don’t really blame the random people assigned to call me, because they probably have been told to tell me this. But it amazes me how much of what is done “for” me seems to be designed more to appear as if they are doing something about a problem, rather than to actually solve the problem.

Either that or I am greatly overestimating people’s ability to apply information to real-life situations. I have a friend who can’t stand up at all right now and whose staff routinely put objects higher than she can safely reach. I also know that no apparent efforts were made to plan for taking care of hygiene, pressure sores, or any other physical things when I can’t move, even though these are logical consequences of not moving — until I said something about it of course. So it’s entirely possible that somewhere along the line someone isn’t thinking that the knowledge that I am prone to dehydration should be applied in places when it is logical to apply it, rather than told to me in ways that can’t possibly help me much when I’m about to go to bed.

It is also possible that someone somewhere is confusing the idea of feeling good with doing good things, but I have another post I’m trying to prepare on that topic, and I do want to get to bed.

Debra and I read this during our Autreat presentation in 2004. It’s a quote from a book that’s out of print, but well worth getting your hands on: I Witness: History and a Person with a Developmental Disability by Dave Hingsburger. (Some autistic people will be interested in the fact that it includes a description by someone who once wrote a program for someone to have a cattle prod used on them, and now thinks there is no excuse for that. But that’s not what I’m quoting here.) And I think it ties into a conversation I just had with a guy from my service agency today, who asked me what I thought about assorted people who write theory about “person-centered planning”. This is an excerpt from an interview that Dave Hingsburger did with a woman named Noreen.

“Do you remember your first days there?”

“Not really.”

“Do you remember being happy, being frightened, being sad?”

“I think the first thing I felt was lonely.”

“That must have been hard.”

“No.”

“No?”

“No.”

“But it’s not a nice feeling, to be lonely.”

“No but that’s pretty much all I ever felt, from long before I went in there. So it was just the same really.” Pow! She moved from the community to the facility and it was the same. It is not a place. How do I describe the thoughts that poured inside me and all around me. Noreen stared at me as it was clear that something was happening inside me. I just knew, all of a sudden knew, that one of the errors we had made was assuming that HOME WAS A PLACE. And it isn’t, it isn’t at all. By focusing solely on community living, we focused on COMMUNITY and not LIVING. By focusing on community, we focused on the popular definition of community being a place that was outside a facility. A community is not a place. It is a sense. It is a feeling. It is belonging. It is having anchors. It is being wanted. It is being necessary. I thought that I was hearing about Noreen’s institutionalization as if it was the first time she was segregated. Noreen’s life was made different not by the fact that she was placed behind walls, but because she was of the type that people thought should be placed behind those walls. Noreen began her journey the first time she was turned down for adoption because of who she was. It means that we do not move a person from a place to a place as this ensures failure or even worse CONTINUANCE OF THE SAME THING; we need to move a person from a situation to a situation, an attitude to an attitude. I’ve made so many mistakes.

“Are you alright?”

“Yes, sorry Noreen, but I have so much to learn from you and sometimes the lessons are hard.”

“What did you just learn?”

“I don’t know if I can explain it.”

“Try.”

“Noreen, when you said that you felt lonely just like you always had, I think I realized that the problem isn’t where a person lives but how a person lives. I think I always just saw the institution as a bad place and the community as a good place. Just like the black hats and the white hats in the movies.”

“I know. We’re not supposed to think this, but sometimes people get mad at me because I say that you don’t just move people out of the institution but you move them to somewhere better.”

This shouldn’t be taken, of course, as an endorsement of institutions or saying that people should go back to larger ones. I’ve seen this kind of thing misused to say we should make more big institutions and put everyone back in those. Which I don’t believe and I don’t think either Noreen or Dave believe. But a lot of the things that have been substituted for them are just as bad. (In fact this is why I refer to small institutions as institutions just as much as big ones.)

But what that quote illustrates a lot of, to me, is what is wrong with the policies that have been shifted around on the basis of words and not on the basis of realism and practicality. Realism and practicality are often used as synonyms for “settling for less”. But in fact I mean the opposite of that when I talk about them. I mean that I’ve lived through changes that were all form and no substance, leaving disabled people in the same position we were always in. I saw a guy on TV the other day talking about being patronized by white liberals, and his comment was “If you show me a duck, and I can see it’s a duck, don’t tell me it’s a chicken. Calling a duck a chicken doesn’t make it a chicken.”

Practicality in this sense means dealing with the fact that changing policy, changing the words used, changing that kind of thing, from the top of a power structure, does not necessarily mean that anything changes for those of us at the bottom.

Practicality means dealing with the fact that, to pull an example out of where I live now, having people unfamiliar with the people in question, interviewing developmentally disabled people, in the office of our service provider, allowing the service provider to hand-pick which disabled people get interviewed, without making much effort to learn our individual ways of communicating, not taking into accont the power imbalances involved, not taking into account things like one staff person told me where the guy being interviewed was just sitting there laughing at how stupid the interviewers were being, not picking people who are necessarily demographically representative of clients (people who use communication aids for example are very underrepresented), and so many other things… is not a good way to ensure quality in services.

Practicality means that when you work in this field, you look at a problem and try to find a good way to solve it. Not just a way that makes you look good or makes people think you’re a great person because of the great things you write.

There’s so much that seems to be geared towards either generating pretty words on paper (that people then, still in power, subvert to do the same old things all over again), or generating a pretty reputation for the service providers, and none of that will work in the end. Stuff like this requires constant conscious reflection on ethics and power with a willingness to admit when you’ve screwed up. There is no room in this situation for self-congratulation, patronization, tokenism, or empty words, nor for “Good intentions make up for everything.”

And it’s amazing what happens when you actually start focusing on solutions with ethics in mind, instead of rewriting the words that describe and contribute to the exact same situations all over again. Changes actually start happening. People actually start living better lives instead of living the same old lives under new shiny pre-packaged labels. And institutions start getting out of the power structures instead of just the building shapes. Unfortunately, what a lot of people want is a formula. But where you have a formula, you have an institution, and a trap is still a trap whether it’s got little shiny pretty ribbons tied all over it or not.

There are two articles I read today that touch on hierarchies in the autistic community.

One is a post by a mother, called Making the Case for the Boring Autistic. She talks about how the special skills of autistics are highlighted in an attempt to make a case for our existence. And how this doesn’t need to happen. As far as I’m concerned, this has needed to be said for a long time.

The other is an article on Autism Speaks, called Autistics Speak. In the course of the article, the author inteviews the creator of Getting the Truth Out, who at one point talks about the way certain autistics value themselves over other autistics.

While I’m at it, I’ll throw in my own Oak Manifesto, which I wrote in response to both hierarchies and false categories. And Autistic Pride Day: Do We Celebrate It Right? by Joel Smith, who describes some false and damaging kinds of “autistic pride” that he’s seen floating around. (Contrary to their own belief, that article was not meant as a slam on the creators of Autistic Pride Day, whom Joel doesn’t even know.)

I want to write more about this, but the Neverending Migraine has been bad today and I need to go to bed again. I’ll just say that both ethically and personally the autistic superiority attitude turns my stomach.

Joel Smith just reformatted and updated his website. It now has a page on Alternatives to Real-Time Speech. It’s taken from his presentation at Autreat 2005, and much of the information is useful. He also has a download of the communication software he wrote.

I’m encountering an interesting variation on a communication issue he talks about. He talks about a situation where he can speak, but only to talk about certain topics. For other topics, he has to type, and then he’s able to, for instance, talk about toothaches, and emotions, and so forth. He talks about people not always grasping that what he can say in speech is not everything he has to say, since he can speak so grammatically.

I encounter a similar problem, only it starts with typing. I can type in clear, grammatical sentences much of the time. Therefore, people assume that I am saying everything I can say through typing. I’ve even had people tell me, “Well okay so you can type, and you can substitute that for speech, so where’s the communication problem?”

Well… there’s a bunch of stuff I still can’t say through typing. And I have trouble switching between one communication device and another. The stuff I have trouble saying through typing is some of the most immediately concerning stuff, such as “I have to go to the bathroom” or “I am thirsty”. I can sign “toilet” and “water” in sign language, and I can, if presented with a set of symbols, point to “toilet” or “water”, but it’s difficult for me to type things like that while they’re happening, or go and grab the symbols when I need them.

I really need a decent communication system that combines typing and symbols in the same system, and that has the symbols set up in a logical way by someone who knows enough how to do that kind of thing. That means that the things I have the most trouble saying, I could have reminders in symbols (because some of the reason I can’t type certain things is remembering that it’s possible to type them, and then there are other reasons as well), and then symbols for other things for when I’m just having a bad typing day in general.

Which means getting evaluated by a decent communication specialist, one who grasps autistic-style communication problems, and who can try me on a variety of devices. My current keyboard is falling apart and starting to malfunction more and more, so this is getting urgent.

Michelle Dawson replied elsewhere to my post about other people’s perception of my writing as “angry” in nature. She said that she’d written to the Canadian Association for Community Living about Tiffany Pinckney, an autistic woman who died from neglect. Their response was to ask her if they could do something to make her “feel” better, implying that her emotions, not the woman’s death or any related injustice, were the problem.

I have been encountering similar things from service providers recently. In a meeting about my grievances with an organization (which included actions that jeopardized my health and safety), I was asked what would make me “feel” better. I replied that if I wanted my feelings taken care of, I would stay at home and pet my dog. It is strange, when talking about situations where life or health are at stake, to be treated as if the main problem is one’s “feelings” about the matter. (On a related note, where a problem jeopardizes not one but several people, it seems strange that I should be expected to care only about myself and my safety — or myself and my “feelings of safety” or somesuch.)

On another note, it seemed important for the person to let me know that my concerns were “heard”. I’m not sure what that means. What I care about is whether people do the right thing or not. Not whether they “hear” me when I talk about people doing the wrong thing.

When there is (as there was recently) an undue level of pollution from construction in my building, to the point where I’ve had to go to the emergency room for inhalation injury and asthma, I don’t want people to “hear my feelings of endangerment”. I don’t want them to come up with a “solution” to mollify me and nobody else, or give false solutions and claim it’s my fault if they don’t work. I want the building to be made safe for all its inhabitants. But those first several things were what was done, until I and another asthmatic had to take matters into our own hands and live on the streets until we were offered alternate lodging (and then only with a very specific kind of doctor’s note) and the construction techniques suddenly improved for the first time since the project started (but of course we were demonized in the press).

It seems that many people expect everyone to just have problems of “feelings” that can be resolved by moving “feelings” around, and also to only care about themselves. The idea that problems exist beyond emotion, that emotion is in fact not the only (or even main) component of trying to talk about or change such problems, and that the problem is not in the emotions of those who complain about it… that seems lost on a lot of people. Easier, I suppose, to reduce everything down to nice individual emotional problems with nice individual emotional solutions. Especially easier for people with power.