On (Not) Having A Guardian

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[I wrote this in an email to someone who was looking for people's stories regarding guardianship and lack thereof. She asked me to put it in a blog post so she could link to it in something she's writing. So here it is. It contains lots of information most people here know, because it wasn't originally written for here. This is also similar to a presentation I gave on this topic years ago.]

When I was nineteen years old, my psychologist told me that I was not a real adult. He told me that by virtue of being in the system I would always be a child. And that this was actually true legally so he and my parents would always have control over me.

He also told me that I would never be allowed to make adult decisions. Because he would be able to stop me. He would tell my parents what to allow me to do. What not to allow me to do. And that he would back it up with various manipulative crap about his professional opinion and that between him and my parents I would never get to do anything normal adults can do, without his permission first.

And he would set me nonsensical tasks to “prove my maturity” before he would allow me to do things. One of those things involved sleeping.

I have a circadian rhythm disorder called irregular sleep-wake pattern that can go both with autism and with a class of movement disorders I have. It means my sleep is pretty random without medication and other stuff. Even with medication it’s far from ideal. Anyway, he told me that to prove my maturity I would have to learn to sleep through the night. This is of course impossible for someone like me through willpower alone. Even taking melatonin at the time, I never truly managed it, but I faked it well enough to fool him and thus got what I wanted.

This was not guardianship. But it is my belief that he told me these lies about my legal rights as an adult, because it was easier than filing for guardianship. If you just convince someone they have no adult legal rights then they’re under a weird kind of de facto guardianship and you don’t even need to go to court! Although I think that if push came to shove he would have tried to get my parents to file for guardianship in the end.

The reason it never came to that was I was already involved in the autistic community. People in that community helped me (with a lot of help from my family) get onto SSI and move into my own apartment. They literally kept me alive by painstakingly helping me eat enough that even if I was starving I wasn’t dying. And when after several months of starvation and other ugly stuff I applied for developmental disability services they helped me and my family through that process as well.

To say my psychologist was unhappy about me living by myself in the mountains was an understatement. He was also unhappy that I had essentially fired him. When I moved out he, from what I’ve heard, threw a serious tantrum on the phone to my parents. Yelling at them for letting me do it. Telling them it would destroy me. But for whatever reason my parents stood up for me and he had no choice in the matter. After the tantrum and a few other things they began to seriously question his professional ethics.

I got developmental disability services about twelve years ago. At the time, my life was a mess and I could not reliably cook, clean, eat, drink, take meds, go to the bathroom in the bathroom (I was using the floor or the front yard half the time), or do just about anything else. With a lot of help I could do maybe one thing half-decently and another thing badly. And that wore me out to the point that I was constantly disoriented and shutting down and having seizures and stuff.

These days, I can do even less than I could back then. My movement disorder, related to autism, amplifies many of the difficult aspects of autism in addition to just the things people think of when they think of movement. I also have other conditions that have resulted in my living in bed except for bathroom trips, appointments, and if I’m up to it a couple hours one day a week at an art program. I use a motorized wheelchair that tilts back and the legs go up, a keyboard to communicate full-time instead of part-time, a hospital bed, sometimes a Hoyer lift, and an electric implant that stops muscle spasms so I can urinate. For all daily living tasks I need at minimum to be handed something to start off the movement, and at maximum the entire thing done for me. I get full support with things like bathing and intimate care. And a full list of my difficulties sounds to most people, including some of the people who deal with funding through the state, like someone who couldn’t possibly live in my own apartment. My outward appearance doesn’t help matters. I’ve been threatened with ICF/MRs and nursing homes many times.

But I do live in my own apartment with only a cat. I get services throughout a lot of the day. I was one of the first people in my state in a program that, as a substitute for a live-in caregiver, has a system so that any time during the night, I can get help within five minutes if I push a button or if any of a number of other alarms are triggered. The technology is the same as used in nursing homes, except that it keeps people in our own homes who would otherwise be forced to live somewhere with overnight care. My cat, adopted as soon as I initially moved out, is an assistance animal who is able to help me get unstuck during my motor freezes. She is a great help during the few times of day with no staff.

I still have no guardian. I have nobody pretending that I have a guardian either, and thanks to the self-advocacy movement I would no longer believe them anymore that I have no legal rights or am not an adult because I’m in the system. I do have a durable power of attorney for healthcare who can make decisions if I’m incapacitated or unable to communicate. With my chronic health issues and a tendency towards shutdown or delirium when sick (and language shutdown even when not sick), this person has been vital. I also have another person as backup if she is not around. These people know me extremely well so they know what I want in all situations. And even if they didn’t, my DPA forms restrict them so that they are not allowed to choose my death even in circumstances where many other sorts of people would want a DNR. This is especially important because as a person who often looks, in the words of a health professional who treated me in the emergency room, like I have “the cognitive functioning of an infant”. This makes some people think I’m not worth treating when I get sick and I’ve had way too many close calls even with these safeguards in place.

I do, however, have many areas where I’m not good at making good decisions. So don’t mistake me for someone who can just do all this on my own. There’s situations I just don’t understand easily. Lots of them. And I’ve put myself in serious danger many times as a result. But I have learned to trust a very small number of people who give me advice when I’m doing something foolhardy.

But they still allow me to make my own mistakes. They warn me beforehand and tell me afterwards why I should have listened. But they have never flat out stood in my way, nor shielded me from the consequences of my actions. This has allowed me to learn lessons that many people under guardianship because of bad decisions never get to learn. If you can’t make mistakes you never learn.

I firmly believe that there are a lot of people under guardianship for making bad decisions or for looking like someone who can’t make decisions at all. Who could learn to make good decisions. And who could learn to trust people who give them good solid advice without limiting their freedoms. I have met people just like me, even people who have much less trouble in this area than I do, who have guardians. And often that’s because people don’t believe they could ever learn to be like I am now: Able to learn from mistakes and able to take advice from a few very trustworthy people who still give them the opportunity to disregard it. And who can help them understand why a decision they made has certain consequences.

I am often not too great with cause and effect even now. I only just learned this summer, at the age of thirty, that choices that I make that endanger my health effect people who care about me. Often it takes a lot of repeated mistakes before I learn something. And because of certain features of my type of autism, I am prone to losing what I have learned and having to relearn it and lose it again over and over before it clicks. If ever. Despite writing well, I have large holes in various cognitive abilities that most people would never expect to be there. Some of them are unusual for anyone, and some of them are unusual for people with my abilities in other areas. Things like object permanence being a really shaky concept even through mid childhood, and still prone to disappearing. And these big gaps in my understanding of the world can seriously affect decision making at all levels. So can the fact that I am so shutdown-prone that any piece of knowledge no matter how basic can easily disappear.

But I don’t have a guardian. And while I didn’t start out able to do this, I have learned whose advice to trust and how to seek it out and heed it. That is a skill that if it’s not there a lot of people think it will never be. But I learned it and so can a lot of other people if given the opportunity.

To have that opportunity, though, the person they’re getting the advice from has to be someone who is actually wise enough to fill that role, and who doesn’t have ulterior motives. Even the kind of ulterior motives that family can have. For instance, not wanting their adult daughter to ever have sex. And using the fact that she’s DD as an excuse to restrict her sexuality in ways that they would never be able to do (however much they’d want to) otherwise. In my case it’s an older mentor figure, and another close friend. A word about mentors though: True mentoring relationships can’t be decided ahead of time or assigned. They have to naturally develop.

I may not be a typical success story, being unemployed and needing help doing just about everything. But I am in control of my life despite being exactly the kind of person who often has a guardianship. And that’s what matters to me: Being in control when I can, and having others know exactly what I want in circumstances where I can’t communicate.

I got very lucky to get to this point. I don’t think it would have happened if I weren’t involved in the self-advocacy community at the exact same time I was being taught that I wasn’t a real adult. And it would have either not happened or been very difficult if my parents had had other wishes, or if my psychologist had talked them into filing for guardianship once his lies fell through. And due to a set of circumstances that are too complicated to explain here, I am not sure I would have survived long, or become able to advocate for myself, if I’d been under guardianship. Either the real kind or the de facto kind under my psychologist’s web of lies. And I’m not exaggerating or being metaphorical about survival.

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16 responses »

  1. Wow…. Just wow…. That doctor sounds like a real piece of work, I would question his professional ethics too!! I think it’s great your parents stood up for you and that you have been allowed the freedom to live your life and learn a lot by doing so. I think it’s great that you’re giving hope to many people who might otherwise be oppressed by questionable professionals. The online community is indeed a wonderful thing.

    PS. Your cat is lovely by the way!!

  2. Parents don’t nor can have perpetual control over you, sometimes they die, mine seem to have been very good at that, either that or I have grown old enough to wear my trousers rolled and measure out my life in coffee spoons. I never felt myself to be an adult until after both my parents had passed, never mind the role reversal between my mum and I where I did for her the things she did for me as a child. This was actually a bargain more than any power relationship thing. I felt that I owed her that duty and there was no implicitness in that bargain we were both fully aware and eyes open about it, we decided after she left my dad to hold our finances in common and had a joint bank account. That proved useful in many ways. For a short while afterwards I held joint accounts with my brother until all the affairs were settled. I can’t really say that either of us possess individual property, what is mine is potentially his and vice versa, many things having passed back and forth between us.

    There are legal rights, which are not universal they change as you move geographically, culturally, and chronologically, and there is what happens, beyond that, those things to be desired, in a categorical order of probability of achievement or hope thereof.

    What did John Donne say? No man (yeah Elizabethan androcentric that he was by culture rather than choice I suspect) is an Island.

    As the Romans used to say, and sounded pompous down the centuries for the saying of it in an Italic dialect other than Etruscan “Quis custodiat custodies” We are all (or should be) each others guardians. I live on my own now, not because anyone has ever judged that I am capable of it, or whether it is a good idea, but because I do, and largely because my one time parent, my dad decided that at the age of 21 he had had enough of me so gave me notice to leave. A weeks notice at that.

    You think you got lucky, I am bloody sure there must be a guardian angel watching over me, considering how I have got this far against the odds.

    • So am I. I’m afraid with the instability of the economy and the country itself (I swear it’s on rickety stilts rather than firm foundations) nothing is certain about the future. Sometimes I think that right now is the most luxury I will ever know. Not that it’s all that luxurious by most people’s standards. But I can imagine much worse, and am not sure how I will fare if things get that bad, considering that some of my limitations have become pretty “hard” — pushing only leads to shutdown or physical collapse. Of course I don’t know how anyone will fare, but disabled people won’t be in a great position I think.

      • Yes, that’s very true. It seems like the situation for disabled people who can’t do full-time paid work in the UK (which was far from ideal already) is going to go down to the (even worse) level that it is now in America, and the situation in America is probably going to go down even further, which is very scary.

      • Yeah and I’m not sure that in the USA the entire system (and not just the disability system) might not fall apart by the end. Which would then have effects everywhere of course. :-/

  3. This is almost off topic, but I’m curious about something. As I recall, you previously said that the movement disorder was not related to autism, as anyone could have it. But here you say that it *is* related to autism. If there a reason for the change of mind?

    • You sure you’re not confusing it with something else I said? Because I have a number of different conditions. I’ve known this particular one was related to autism since I was first diagnosed with it in 2000. I could also have been making some vaguely related point and worded something incorrectly or ambiguously.

  4. In light of this, I find one of Dave Hingsburger’s recent posts horrifying: http://davehingsburger.blogspot.com/2012/03/ok-ok.html

    But it does get the point across. I tried this out on someone the other day who wanted to know why someone he worked with was always happy in the morning and always tired and a bit grumpy in the evening. There was nothing medically wrong. The fellow I was talking to made like the person was being willfully difficult in the evenings. I suggested that maybe, by the end of the day, he was just tired, really, really, tired. This self same staff gave up after trying for five minutes to write a sentence without ‘e’ … he looked at me and said, ‘this is really hard work’. I suggested that the fellow he supported worked hard like that all day every day. I suggested maybe developing an evening routine that was enjoyable, full of things the fellow chose to do – that he’d choose things that were comforting and less challenging than his day had been. It worked. Everyone is happier.

    And I asked why this man wasn’t already spending his entire day doing things he chose to do. But no one else did and no one noticed the comment and I don’t know how to say more clearly why I find that horrifying.

    Except that I thought Dave Hingsberger of all people would understand that. And not just take it for granted that people with cognitive impairments who need a lot of support spend most of their time doing activities dictated by others. And that if there’s too much of that, the way to fix it is to make staff more compassionate.

    And if he doesn’t get that, then who does?

  5. One of the most important things in my life that allows me to function is wisdom. Wisdom gained from experience, and making terrible mistakes. Worrying about doing things the way other people expected me to do them just made me less and less functional.
    Amanda: I’m 30, too. I’ve decided it’s a really good age to be, and I feel a lot better about my life and its prospects than I did in my 20′s. I still forget how to do things I’ve already learned (or thought I did), but now I’ve got the wisdom to KNOW I’ve forgotten, and have better ideas on how to start relearning them (and even more importantly, whether I SHOULD).

  6. Amanda, your work is extremely helpful to me in understanding autism and disability, and the extent of the misconceptions around them. When I read your posts or watch your videos I am absolutely thrilled that you and others are able to communicate and demonstrate these realities (and also ashamed on behalf of neurotypicals).

  7. Indeed. Not being able to do something for yourself has absolutely nothing to do with whether you can make decisions about that thing. And not being able to make decisions about something is also unrelated to whether you can competently appoint someone to make that decision for you.

    I wish people saw things more from this perspective–presuming competence rather than presuming incompetence. I would much rather have someone be surprised when I tell them that I cannot understand how to make a decision and need help with it, than have them automatically try to take over because they simply assume I can’t, due to my performance on some unrelated task.

  8. Amanda,

    Thank you so much for this entry. I’m a psychology undergrad fumbling to find ways to explain to my future colleagues that helping anyone with a psychological or neurological disability absolutely must start with fully respecting the patient’s personhood. Your writings (and youtube!) have been incredibly helpful to me, and this entry in particular is something I’m going to start (metaphorically) beating people over the head with. I greatly appreciate your candor, bravery, and the time and effort it must take you to write this blog!

    -A.

  9. It scares me sometimes that if I’m incapacitated my mom will be making medical decisions for me. She doesn’t believe in medicine and psychology, and she thinks that life with disability is worse than death. I think, if I were to be severely injured–especially if my brain were damaged–she would want to pull the plug; and I wouldn’t want that, because there’s pleasure in life to be had with the disability I have now, and if I had additional problems it would still be worth it. I keep having stupid nightmares about having moved back in with her and not being able to move back out… but what am I supposed to do? Unless I get married–which is not likely–she’s my closest living relative.

    • Unfortunately I’m not in a good brain state to make recommendations. But if you know anyone you would actually trust with your life (which is a big if), it’s possible to get documents made for durable power of attorney for healthcare that will allow that person decision-making power in that event. You can also do various sorts of advance directives, but you have to be really careful because those are designed to help people die, not to help people live, and there’s tricky wording. (Like “Would you want painkillers even if they’d kill you?” sounds reasonable but is also used as a loophole to kill people for reasons other than them needing painkillers that would kill them a few days earlier than otherwise. Not that I’d advise anyone either way on that, it’s just something to remember.) But if you can find a good one, you can I think even restrict what your next of kin or DPA can do even if they get that power. (I think you can also put stipulations in the DPA paperwork saying they’re not allowed to decide to pull the plug on you.) The problem with all of this also is it’s possible for hospital “ethics committees” to override people’s stated wishes to live even if they’re totally conscious and aware at the time they’re saying they want to live. But having these documents on hand is better than nothing. If you’re in the USA, laws vary by state, so the documents will vary by state as well. In some states you can even write your own, in your own words.

      • It sounds really complicated. I guess I’ll just have to figure it out, somehow. At the moment, I’ve put a few states between me and my mom, which is a bonus; and I never list her as an emergency contact. I guess I’ll have to do some research.

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