Guardianship and vulnerability

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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.

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

15 responses »

  1. Thank you so much for writing this. Guardianship really is a place where we don’t want to go, hence our struggle with the idea.

    I think you hit the nail on the head when you wrote, “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 couldn’t agree more!

    It’s so hard to know what the right thing to do is. I truly appreciate you and ABFH taking the time to express your views on this issue. Your perspectives are helping me clear things up in my mind.

  2. Hi Amanda
    Thank you for your honesty. For me this is a very important topic. What I wonder is why there are not more studies- published, sociological and well done- about the opinion of autistic adults- even non-verbal but with the possibility of communication through alternative ways-writing, assisted, etc-about guardianship and treatment (conventional or not)in the well-being and adult/teen life for an autistic person. There are NO information for many of us, parents of autistic children for now that are very interested about the impact of all our decisions in the well being and independence of our children-beyond our duty in terms of providing the best approach in terms of health and preparation for the world-. I suppose that this kind of studies MUST be done and MUST be known more widely.
    The kind of doctors you found are the kind of doctors that many of us found. Therefore for me the problem has so many aspects- medical, sociological and from information- that it seems to depend today of the familiar decision on the topic- internationally speaking.
    Thank you, again.

  3. 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.

    Probably most of us. I’m not quite sure how to word this, but the impetus to get involved in neurodiversity blogging could have come in part from the experience of having spent a significant amount of time when we were younger exploring the world and figuring out how we related to it. Autistic people who had more typical experiences and who were not as vulnerable in their teenage years may be less likely to consider the implications of today’s civil rights issues.

  4. I was thinking the other day about what would have happened if the paediatricians and my dad had had their way and I had been formally assessed and diagnosed as a child. My mum accepted I was different from most people but didn’t want me singled out or placed in a special school. And I thought that one thing that probably would have happened is that people would have kept closer tabs on me and not given me the chance to make mistakes or realise what I can do. If I think about it I do not have good selfhelp skills. I forget to wash or brush my teeth or brush my hair. It has been over ten years since I bought sanitary towels or tampons. My shortterm memory is appalling. I cannot follow a recipe properly (although what I do is just make up my own recipes). I am hopeless at managing finances and am only ok in that respect due to not having any credit cards or loans. But because nobody pointed out to me that a grown woman should be able to do these basic things (or what is seen as basic in mainstream society) I found I could manage ok without all this knowledge. Ironically looking after my lads and ensuring they are clean and fed and played with presents no problems and in doing so my routine with myself has improved slightly. But on the whole with me I am far from being able to manage a lot of things.
    I don’t know how typical my teenage years were. I was very fortunate not to spend time in institutions for example. But I had no friends, no idea about things like peer pressure or of wanting to fit in. And so, partly for that reason, I got a strong sense of selfidentity and I will defend the right of anyone to selfadvocacy and independance.

  5. -Maria:

    The reason there arent those studies, that information, is the people insisting that autistic adults dont exist, or barely exist, or are all either aspies or in institutions, and instead want the money to know what chemical stole their baby. WE want the money to go into more options for adults too, believe me! But until the loud PARENTS (they don’t listen to us, either we don’t exist or have “something else” or are mentally deficient, after all…) start yelling for this it isn’t going to happen. And right now they’re too busy yelling for “cure”.

    as for vulnerability. Heh. I actually look a lot more vulnerable than I am (which is frankly VERY) which has saved my butt. I look VERY young, like age 15 young, and there are many many things that one can get away with under the radar of predators as a teenager that they can’t as an adult. I don’t know why, it just IS. Martial arts classes and gymnastics have given me some security, knowing that should I be confronted again-it DOES happen just not as often as for some people-I have the ‘moves’ and the muscle to pull them off. Always helpful, because the less safe I feel the more strange I appear.

    Great article.

  6. 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.

    WTF is the deal with psychologists who try to convince you that the internet is this dangerous place, and that you must get off it at once? I really would like to know. The one who kept telling us “You need to get rid of that thing” wasn’t as bad as the one you described, and never told us that we wouldn’t have the same rights as other people when we were a legal adult or anything similar, but we had already spent enough years in therapy to ‘understand’ that whenever there’s a difference of opinion between you and the psychologist, they are always right and you are always wrong. So we tried to stay off it, but we still had this gut instinct that, actually, we should stick with this (this being the Internet) and that it was the way we were going to find “the others like us,” someday. We just had no idea how to express that feeling in words.

    However, for a while, in the eyes of everyone around us, not just professionals, spending more than five minutes a day online was somehow dangerous and pathological. The best reasons anyone could give for *why* it was dangerous was because “those people online aren’t real, they aren’t real friends, your relationships with them mean nothing, and if you stay on the computer all day you’ll never learn to make real friends.” Never mind that 16 years had already gone by without these skills needed to “make real friends” materializing. And “people on that thing are not who they seem to be.” Never mind that we had previously been sexually assaulted by a “boyfriend” and neither seen it coming, nor realized he wasn’t actually our friend or to be trusted, even while it was happening. (Well, it didn’t help much that we had been given the oh-so-useful advice, in regard to assault scenarios, to “never fight back, no matter what.”) At least on the Internet, you can close the chat window. That’s not exactly an option when someone is holding you down. The whole concept that the Internet is vastly more dangerous than “real life” in this regard suggests a… very bizarre conception of how the world actually works. Finding out that the 18-year-old girl you were talking to is actually a 40-year-old man… really wasn’t even in it for us, as far as things which were actually scary or threatening went, and still isn’t.

    Not to say we haven’t also gotten into some really pathological and destructive relationships with people online, but you kind of have to hold the door open longer in order to get into that, so to speak. And yeah, there were people who found this very easy to do to us by exploiting certain insecurities and conditioned reflexes of ours, at one point, but it would have been even easier for them to do offline.

    In fact, one of the major ways we *learned* that we actually had the right to refuse to do certain things was through the Internet, and through people we met there, when we started to find people who could really confirm our perceptions of things for the first time ever. This might also fall under the category of “skills you couldn’t have learned if you had been too supervised,” in that after a certain point, our family stopped monitoring our online activity very much.

    The interesting thing was that people seemed to be all wrong about the times we were vulnerable and what situations were vulnerable to us. The things that were seen as others in our life as “dangerous” (like the Internet) were the most helpful in allowing us to learn new things. The people like the boyfriend we mentioned often came across as “nice people” to everyone in our lives, and our having a relationship with them was approved of and condoned.

  7. I don’t know. I also had a psychiatrist at one point who was convinced that if I got on the Internet I would be taken in by a cult that made people use pacifiers and diapers or something. And I do suspect it is a genuine threat to their control of the information we receive, to have all this information and all these people available to us.

  8. We kind of figured out after a certain point that every time someone said that something was dangerous for us or that we should avoid it because it would confuse us, because we didn’t have good enough judgement, because we didn’t really know who we were and were too easily misled, etc, it meant that we were getting closer to the truth about what we actually wanted and needed and our own most efficient ways of operating. And this apparently frightened people, so they’d rush in to tell us that we’d been misled, that we would just believe whatever anyone told us because we didn’t understand what we really wanted, that we had just been taken in by a slick presentation, etc, etc.

  9. Regarding the Internet thing: when I was about 11 years old I also discovered BBS systems, and found this to be a wondrous communicative experience. It was funny, though: people were concerned that I wouldn’t learn “real social skills” by being online, and yet, practically all the skill gains I’ve had over the past year or so have been due to reading stuff and communicating with people online (particularly autistic people).

    And in response to the points made about vulnerability — though nobody actually applied for guardianship of me, there’s no question in my mind that I “looked” like someone who would probably end up with it eventually (particularly around junior high age). I am vulnerable as well in some of the same ways you are — especially the part about answering questions too readily and having difficulty with immediate, direct answers.

  10. I don’t think that guardianship was ever discussed for me, but I know that I had to fight the parent I lived with at that time to be allowed to move out, since I wasn’t considered to be capable of living on my own (I was). I certainly made some odd mistakes, especially in the beginning, but I both survived them and learned from them. This was before that parent had any idea of autism. With that, I’m certain it wouldn’t have been as easy for me to “get permission”.

  11. In my case, I’m lucky that it doesn’t matter much to me. My parents long ago stopped making major decisions about my life without my permission, so it’s almost like they don’t have guardianship of me anymore anyway (I’m 17, so by vitue of being my legal guardians they can choose to do major stuff to my life without my permission, but I can’t imagine them actually doing that).
    But when I imagine if someone like my grandparents (not counting my maternal grandmother, who died shortly after my mother became adult) sought guardianship of a disabled child of theirs, I can certainly see the danger. In my Dad’s family, he’s the most psychologically healthy sibling and the one who cut contact with his family. In My Mom’s family, two of her brothers moved as far away from the rest of the family as possible, and they are the only ones we’d be safe visiting (and we have visited one of them, but haven’t gotten enough money to visit the other).

  12. “I also had a psychiatrist at one point who was convinced that if I got on the Internet I would be taken in by a cult that made people use pacifiers and diapers or something. And I do suspect it is a genuine threat to their control of the information we receive, to have all this information and all these people available to us.”

    This happens here in Finland too. Psychiatrists are pretty poorly developed in the ego department, it seems.

  13. I hope this isn’t too late or off-topic – when you said “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.” it made me think of Golda Meir’s famous words when there had been an outbreak of assaults against women at night. One polititian suggested a curfew for women. Meir suggested that since it was the men who were out hurting women, why not keep the men off the streets instead.

    Similarly, just because you might be visibly vulnerable, why does that mean restrictions on your behavior? You’re not doing anything wrong, it’s the predators that are doing something wrong. Lock them up with guardians watching their every move and making all their decisions for them.

    Saying that people who appear vulnerable* should live restricted lives because of what bad people might do to us is accepting evil as a fact of life and blaming the potential victims.

    *This applies to pretty much any group that is regularly subjected to abuse by the dominant culture, whether it’s women, people with disabilities, or any other marginalized group.

  14. “I can remember discussions of whether my appearance alone was too vulnerable to be allowed in public by myself.”

    You apparently have never been in the neighborhood where *I* grew up …

    There, quite honestly, you’d be unsufferably boring … :)

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