Daily Archives: January 10, 2007

Guardianship and vulnerability


Of her son, defending the possibility of guardianship in response to a post by the Autistic Bitch from Hell on the subject, attila the mom writes:

Although I’ve blogged about his autism in a limited way, because that’s not what my blog is focused on, he also has some significant cognitive impairments.

He’s not like you, ABFH. Or many of the other bloggers who have autism.

Considering guardianship isn’t about keeping him from making teenage/autistic mistakes. We welcome mistakes. Some he learns from, some he doesn’t seem to be capable of learning from because of his other impairments. It’s simply that because of some of his other “issues”, he really IS ripe for victimization.

I wonder how anyone would have seen me ten years ago. Or less. In terms of whether Amanda-teen is anything at all like Amanda-adult. I wonder what would have happened if people had assumed that since i was “ripe for victimization,” I would need a guardianship as an adult. I have reason to believe that some people, at least, were thinking along those lines.

Not so much my parents. They wanted to protect me, but I never got the sense they wanted guardianship. This had to do with professionals. I can remember when I turned nineteen and was beginning to really get a more and more solid handle on things like communication and self-advocacy, beginning to resist the system I’d been in the past several years. My parents were supportive of my attempts at independence. My doctors were horrified.

I remember one psychologist trying to actually convince me that I already was automatically under guardianship. He didn’t use that word. He told me that by virtue of the system I’d been in, my legal adulthood did not actually mean anything. He said that I did not have the same rights as real adults and should not attempt to exercise them. He said that if I did try, he, in consultation with my psychiatrist and my family, would intervene to make sure that I was “safe” at all times.

He tried to discourage contact with the new friends I was making, mostly autistic people in the self-advocacy movement who were telling me I had things like rights and stuff, and encouraging me to stand up to people like him. He called them liars and pathological narcissists and said that it was highly unlikely that anyone autistic actually got on a computer. He was always telling me not to believe these people really existed or cared about me, or were even relevant to a life like mine. I am sure he would have patiently explained to all and sundry that they were, even if autistic, definitely not like me.

When I finally moved out on my own, and quit seeing him, he apparently blew a gasket. I wasn’t around for this. My parents apparently had to bear the brunt of it, and they were fortunately supportive of my independence and suddenly realized what a jerk this man — who had known me since I was thirteen years old, and come highly recommended to them as an unconventional psychologist who took difficult or unusual cases — had been. They got treated to a long rant about how it was dangerous, them allowing me to go out on my own, and how all kinds of bad things were going to happen to me, and how they should not allow all this to happen, should not allow me to shut him out, etc.

My parents held their ground. If they hadn’t, I’m sure I’d be under guardianship by now, because he had been trying all along to establish some kind of de facto guardianship where no decisions whatsoever happened in my life without approval from him.

As far as vulnerability goes, that was being discussed long before the question came up of moving out on my own, back when the whole idea of whether I’d ever live outside an institution or my parents’ home was still an iffy one. I can remember discussions of whether my appearance alone was too vulnerable to be allowed in public by myself. If vulnerability were the criteria for guardianship, I am also certain that I would be under guardianship today. In fact, one reason that I have a durable power of attorney form is because I’m aware that even today someone could decide that I am not competent to make my own decisions, if I screw up in any of a number of ways.

I give things (money, food, etc) to people who seem to need them. Many people have viewed me over the years as being taken advantage of in this regard.

A couple years ago, two people approached me on the street. They started touching me and talking a lot about sex. Then they wanted me to get into a car with them, where they said they had a toy exactly like the one I was holding. I did not get in the car with them, but not for any reason of having noticed this was an unsafe situation.

When I first moved out, and walked around a lot more in public alone than I do now, the local teenagers used to play “taunt the retard” games, and tried to confuse me, then laughed at me.

My ability to deal with money is pretty limited and I need a lot of help with budgeting in order to avoid inadvertently ending up in negative numbers on a regular basis.

I’ve frequently done things like walk around at night in “bad” sections of town, without realizing I was in much danger. One time I even got cornered by a bunch of wild dogs and had to stand there for hours until they went away.

If someone knocks on my door and acts like they are supposed to be here, or even walks in totally unannounced, I let them in without checking to see who they are first. If they begin asking me questions, I answer them, although I don’t always answer them correctly because I have trouble accurately responding to direct questions. At least one lawyer has already taken advantage of this to inspect my apartment without permission and gain information that she believed useful.

I am very easily intimidated into obedience.

I cannot easily distinguish what is an emergency from what is not an emergency, nor can I necessarily get help in an emergency after identifying it as one.

I rely enough on automatic movement patterns that if, for instance, you put pills in my hands, or a noxious liquid in a cup, there’s a high chance I would swallow the pill or drink the liquid.

My perception of objects, especially in unfamiliar situations, is often limited to various sensory attributes of the objects, rather than what the objects are, what they can do to you, etc. I am in fact attracted to some very dangerous sensory attributes of objects, such as parallel lines (think roads).

I have done things before in the past, again in a combination of automatic movements and not fully processing rapid sensory data, such as open car doors in the middle of freeways without having a death wish.

I wear shorts in the snow if I don’t watch it.

The way I look (in public or anywhere else) marks me out very obviously as “different”, which of course can attract all the wrong kind of attention. Here’s a video of what I usually look like when I walk upright, just for reference purposes in that regard:

There has been serious question about whether the way I look marks me out in itself as too vulnerable to be “safe” leaving the house, especially given all the other stuff I’ve described. Certainly, it’s very hard for me to go out alone without attracting police attention, unless I am somewhere everyone knows me already.

I am generally thought of as having dangerously atrocious judgment when it comes to social situations, at least in realtime. I have repeatedly thought people were my friends who were actually in the process of harming me, and did not notice they were not my friends.

(My ability to apply any knowledge I do gain — of any kind — is extremely limited in everyday real-world situations, to the point where my “adaptive functioning” is officially considered one (small) tier above the lowest they could measure, even taking into account academics as used in the real world.)

I generally have immense trouble remembering things that I need to remember at any given time, including in medical situations.

I need a lot of help making certain kinds of everyday decisions.

Left alone, I cannot provide myself with food, water, clothing, shelter, minimal hygiene, etc.


In other words, if someone was hell-bent on proving me incompetent, they wouldn’t have to dig very far. I know a lot of people who already have guardians who are more capable of handling a lot of things than I am. I got lucky in that my parents did not want to be my guardians forever, I escaped the people who did want me to have a guardian, and so forth.

I am not saying that there don’t need to be ways to work around these (real or perceived) limitations. But guardianship has always seemed to me like throwing an atom bomb at an anthill.

I also have a problem with uncritically perceiving us as vulnerable. It’s a very view-from-above position. I remember reading a book called Retarded Isn’t Stupid, Mom! where the author’s daughter moves out on her own. She is “vulnerable” in more ways than one, keeps company her mother doesn’t approve of, has immense difficulty handling financial affairs without disaster, but does live happily on her own amidst a lot of other people. The people she chooses to have in her life are not necessarily the people her parents would choose. The situations she gets into are not necessarily the situations her parents would approve of or find safe. But she’s living her life and these risks, though undoubtedly in the category most would define as serious, are part of that life. Taking her into guardianship would seem to me to be a horrible way to go about anything.

Parents of cognitively disabled kids often have real trouble seeing it as okay for us to be the people they believe are vulnerable, but out in the real world without guardians. If I’d had different parents, or staff, I might still be “protected” from the experiences that have allowed me to experience life as a reasonably free adult.

There’s something wrong here. I don’t know how to name it, what to call it, anything. There’s something wrong with what attila the mom said, in several parts. There’s something wrong with conceiving of us as possessing the inherent trait of vulnerability, and conceiving of guardianship as the main solution to that now-presumed-inherent trait. There’s something lacking in imagination, and there’s some kind of ableist values creeping in that I don’t know how to name or describe adequately. But something’s wrong here, with this entire conception of disabled people and our place in the world and our relation to each other and to those around us.

And I wonder how many of these autistic bloggers that are supposedly so different, would have looked so exceedingly vulnerable (by view-from-above standards) and possibly non-comprehending as teenagers that guardianship would be seriously considered. I wonder that because I know I was in that category, and I know that a lot of us were underestimated as kids at some point.