On (Not) Having A Guardian

[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.