My friend, in the disability gulag, without support.


I have a friend that I left in California.

I first met him at Autreat. He was sitting there being sort of bypassed in conversations, looking blatantly autistic and blatantly institutional and blatantly reminiscent of me at my first Autreat. I asked my staff to help me talk to him (having someone around to start conversations for me can be useful). He told me that my staff and I were the first people there to make sense to him. He was living in an institution (he wasn’t sure if board and care homes counted, but I could tell by his demeanor that this one did), and was having trouble getting the services he needed to get out. There was some kind of complication. His mother.

After we got home, I got to know him more, in visits. A mutual friend would drive him to my house, and we’d hang out, or talk about things, or watch videos, or go out to eat. It was nice to talk to someone I could understand, not just on the autistic level but on the level of institution experience, which can be as much of a divide between people as autism can sometimes. From what he said, it was nice to talk to me, too, for similar reasons. He also said he viewed our visits as one of the few times he was free. He feared that this freedom would stop entirely soon. He was right.

When I left, I had my staff promise to try to help him out. But then things took an unprecedented turn, and she acquired a health problem serious enough that she can’t work, let alone go all the way to San Francisco and help my friend. She’s supposed to take it easy at home until they can figure out treatment options.

My friend also attended a support group for autistic people. His mother no longer allows him to attend. She believes that the other group members are too high-functioning and have nothing in common with him. My brother, who attends the group, told me about this.

The last I heard from our mutual friend, he only hears from my friend when he can sneak phone calls from his mother’s apartment. She hangs up the phone if she catches him calling his friends. He is trapped, and from here I feel completely impotent.

His mother believes she is doing what is best for him. She believes that he doesn’t know enough to run his own life. She has not seen firsthand people like me, who have problems in living at least as much as he does, but have our own places with people who come in or live there to help us. She has not seen how long-term institutionalization causes loss of abilities which further justifies the institutionalization, she has not seen people who once lived in institutions learning slowly to make choices and be less passive. She is probably also afraid he will abandon her if she doesn’t keep him trapped. I’m not sure she realizes that she is suffocating him, forcing him to make an impossible choice between his love for her and his desire for freedom, and then forcing him to not act on whatever choice he makes. Declaring him incapable of making or understanding choices.

He has lived in a lot of different countries.

He told me that he learned from this, that there’s never just one way to do something.

He tried to tell his social worker that, that he’d lived in a lot of different countries. (And now she was constraining him to one way of doing things. And treating him like he had no knowledge of the world.) She, he says, didn’t understand.

I told him that I wanted to visit other countries sometime. He told me that I would need to be very careful and take someone with me at all times. And the system treats him as if he’s stupid.

He liked learning about freedom, but it frustrated him. I knew it frustrated him and I was afraid to say too much, because I know that thinking about freedom, while in captivity, can be life-threatening. I told him that. He was startled and asked how I knew. I’d been locked up, too, and I know what that kind of fear is like, and how it’s necessary to mold yourself to fit confinement. I was really careful, knowing how submissive institutions can make you, to try not to lead him into saying something just to agree with me. And I told him this.

He understands more than he’s ever given credit for.

The Regional Center near where he lived kept rejecting him. It’s mainly an old category-bias: He’s in the psych system now. Despite three conditions diagnosed at various times that qualify as developmental disabilities, despite immense difficulties with daily living, community navigation, socializing, communication, and learning… they rejected him. Partly because he’s in the psych system and therefore Not Their Problem. Partly for other reasons. (Similarly, psychiatric institutions in California will often not take Regional Center clients. Which can be advantageous if you don’t want to be stuck in one.)

His mother is now keeping him in confinement “for his own good” that is stifling him. I’m afraid for him. I know that he wants to both love his mother and be free, and I don’t think she is going to allow that. His mother is getting old, and she is convinced she is the only person in the world who understands him or knows what’s good for him. She is also convinced that everyone else in the world, including everyone else he likes, is a danger to him and needs to be kept away from him. He is nearing middle age, but because he is disabled, she can get away with treating him as an unruly child, and he both loves and fears her.

She is convinced, I think, that if the situation changes, and he gets into trouble, and she dies, then he will be helpless or worse. I have seen this happen before with disabled people his age, and parents his mother’s age. Somehow it always leads to some of the worst restrictions possible — in one case an autistic woman locked in a single bare room of her own home without even toilet paper to keep her entertained, while staff got the rest of the house — and the least willingness to challenge the system even when it needed challenging.

I am afraid that her actions based on this fear are going to damage his life more than the events she fears, could. I am also afraid that her actions are going to tear him apart, or deaden him, emotionally, and he will have no friends to talk to about it because she will have kept us all away. I am afraid of what he said when we went out sometimes: “I’m afraid this isn’t real. I’m afraid this is going to be the best time of my life, and then it will be gone, and everything will go downhill from there.”

I’m also afraid because I know that if my family had not cooperated with my desire to live on my own, I could be exactly where he is now.

I don’t know what to do, or whether there is anything I can do. Praying for him, which is all I have come up with, sometimes seems like a lousy substitute for doing something.

He has been eager to have his story told to a wide audience, and at one point I tried to get an interview lined up for him with a disability rights journalist, but one thing and another made that difficult. I have not named him, although people who know him will recognize who I’m talking about, because I have not asked permission, and now may not be able to.

So I am telling as much of his story, here, as I know how. I hope one day he’ll read it.

One thing he always had a problem with in the autistic community, and it’s a problem I have run into and noticed myself, was “Where is all the practical help? These are great ideas about us not being defective and all, but what will anyone do for me right now?” I believe that these ideas will ultimately destroy the position that he’s being put in, but that’s in the long run.

But in the short run.

In the short run, there are lots of people trapped, like he is. In or barely on the edge of the disability gulag. And I’m not always sure that people who have not lived in that gulag, have noticed that they exist, or understood that every single one of them is a person. Many want and need practical help. Now, not when the ideals of our community finally seep into the real world.

Although… speaking of the ideals of our community… many in our community don’t see a problem with various parts of the gulag and assume everyone is happy there, or at least should be, because it’s our lot in life, isn’t it, or something. Many mistake passivity, terror, the lowered expectations required to survive in those places, the carving out of a life for oneself even in hell… they mistake those things for these being great places. I talked to a former prison inmate about this, and she said something similar happens, with free people not understanding at all what happens inside them, not seeing even what’s in plain sight. I agree, and don’t think most free people understand the incarcerated mind at all, and the extent and nature of what is ugly and despicable and disgusting and horrible about incarceration of any kind.

Many in our community have been taught, as everyone is, that certain kinds of people, well, that’s what you do for them, that’s how they get assistance, the only way to get out is to not be that kind of person. I’m “that kind of person,” and so are many people I have known who live both inside and outside of institutions of various sorts. One woman in the Community Imperative conference I attended in Oakland, said, that over the years, in her work in California, she has realized there’s not such a thing as a kind of person who needs to be institutionalized, and that the population of people living inside and outside of state developmental institutions is identical in all but freedom.

But right now it’s not those ideas that are running through my head the strongest.

I miss my friend. I want him to be able to come out here and visit me, like we’d talked about. But most of all I want him to have the freedom he wants, I want him to be able to live somewhere that doesn’t force him into that awful incarcerated mindset, I want him to be free long enough to get to be comfortable with himself and to have the strange privilege I do of fearing losing my freedom again.

I co-presented at that talk at Autreat, the same one he attended, the same one Jane describes here, because so much of the autistic community is so damn ignorant or complacent about this kind of life, the kind of life I’ve led, the kind of life he leads, the kind of life that so many other people are leading right now in this moment. We’re obviously under-represented out here because we’re more likely to not have learned to use computers, we’re more likely to not have access to computers, we’re more likely to in various ways not be able to interact with the autistic communities that have formed. And then when we do interact, we often find that, as Laura said:

Well, having this experience does make me pretty much inevitably different. I’m not the same as other people. And I’m aware in many ways, whenever I deal with people, especially politically, I am aware that there is a whole… there is an experience that I have had that they have not had. And it’s usually very obvious to me that there’s how it is that they have not… it’s just, I don’t know how to describe it, I really don’t. I wish I had a better way of describing it. But I can tell that I have had an experience that is not theirs, that my… oh gee.

There’s, I almost want to call it a level of naïveté about what can be, in people who have not been through this. A kind of, I’m trying to describe something that I sort of know it when I see it but I don’t know… I guess many people don’t live with… I am trying to find words for concepts that… it’s a level of naïveté. A failure to understand how bad it is or can be. A failure to understand how the issues are really that of life and death, a failure to understand the importance of… yes, a failure to understand. There’s a level of unseriousness there, a level of too much faith in the system as it is now, too much misplaced faith in it. And too much, I would almost call it eagerness to try to prove or establish that they are not like these people almost. Like that these people are not them, that they’re better than people who’ve been through that and in any case those people deserve it and in any case it was good for them, and in any case, you know, and if it wasn’t good for them it was not a systemic issue. It was just, that one instance. That exception.

So, many of us even with the access to these groups, end up sticking to the fringes, or not talking about it, especially if we view our experiences there as bad. We run into a lot of social norms that exclude us unintentionally, in similar ways to how non-autistic people can inadvertently exclude autistic people. And nobody likes being told they’re being exclusionary, so just as non-autistic people can get angry at autistic people asking to be included, and dismiss what we say, so can autistic people dismiss the experiences and personalities and exclusion of institution survivors. Thus, it’s sometimes easier to be passive and silent.

But we’re here. The lucky ones, like me, have gotten away for the most part — whether by becoming the sort of person nobody wants to lock up (as some people I know have done), or by finding places that don’t lock people like us up (as I have done). The unlucky ones still live it in various forms. And my friend is at the moment not one of the lucky ones. I just don’t know what to do beyond tell this much of his story, the parts I could remember just now. I want to be like Ron Weasley and show up at his window in a flying car, but that’s how things work in books, and real life is more complicated.

Anyone who wonders why I talk about this stuff all the time? Stop wondering. It’s not some kind of twisted hatred or bitterness that some people make it out to be, it’s love. I can’t explain it clearer than that.

Tags: institutions autism disability autismcommunities autreat friends regionalcenter services disabilitygulag harrietmcbrydejohnson lauratisoncik janemeyerding


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. 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 in 2014 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.

5 responses »

  1. “Where is all the practical help? These are great ideas about us not being defective and all, but what will anyone do for me right now?”

    I read your blog entry two days ago, and have been thinking about this particular concept ever since. You are right that the “great ideas” have a long way to go before they infiltrate common thought to the point of effectiveness in prompting positive change. That will be a wonderful day — when that positive change comes about, and I am sure a lot of people such as those in your friend’s position will benefit from it. However, until then, there are people suffering — in institutions, in their own homes under confinement — and not being treated as people, and great ideas about acceptance will not grant them the freedom they deserve as humans. What we really need now are some great ideas about addressing immediate human-rights concerns.

    I “escaped” institutionalization at the age of nine, partly due to being lucky enough to have an astute family member who figured out what another family member was trying to do. I have never had the institution experience, but it was quite possibly a near-miss, and when I read about people’s experiences in such places I do not find myself thinking, “But I’m not like them…they wouldn’t lock anyone like me up!”. Instead, I find myself thinking, “They DO lock people like me up. People who were in the wrong place at the wrong time, around the wrong people.”

    I don’t know what I personally can do to help people like your friend…however I have been thinking that it might be a good idea for autistic persons, whether we have been institutionalized or not, to write about alternatives to institutions and confinement. The impression I get is that the General Public sees only two options for the developmentall different / mentally ill / etc.: being locked up somewhere (where they can be forgotten about) or “running wild on the streets, wandering in front of cars, and attacking passer-bys”. This is not reality: this is hyperbole, but unfortunately very few people even know that independent (with support, if necessary) living is even possible for those with autism or other developmental differences. All they know about is the hyperbole…the extreme case of someone that needs drastic measures to keep them contained. I might wander into traffic on occasion, but in recent years I’ve had someone there to pull me out. That act of helping me avoid being squished probably also helps me stay independent in other ways. And it’s so simple.

    I think you are doing an excellent job toward helping people just by writing about your daily existence. I have been reading your blog for a while now and I am very glad you have decided to share your writing with the world, if only because it is evidence that people “like you” really do exist. People who cannot be categorized along functioning lines. People who are less rare than they might seem.

    But your friend still is not free and I do not know how to help in this case. I will be thinking about it, though.

  2. I just found your website yesterday and it has been VERY enlightening. I have been searching for years to read people’s experiences who are
    1. have lack of speech or are “nonverbal”
    2. spent a good portion of their lives in institutions
    3. were classified as “low functioning” or “mentally handicapped”
    You know what ? I could find nothing. Everything I found was from the parent or workers point of view.
    Doing your blog and showing “this is what I am thinking when I do …. is one super great way of letting the rest of us “normals” understand and be able to relate.
    One general question – How do you figure out what the preferred method of communicating is for an adult without speech (especially when any and all types of communicating i.e. FC, communication boards etc are banned ?) If you could (and this applies to anyone out there with PERSONAL experience of going through that ( not being allowed to communicate) please email me privately.

  3. Hi
    My apologies – I thought that my email address would show up. So scrap the “email privately”. I didnt want to clutter up the blog with stuff that wasnt considered relevant. I guess my main issue is “how can I convince other staff that people who cant talk DO have brains. ” My favorite saying is “the brain is not in the vocal chords” I will definitely be coming back to this site on a regular basis. THANK YOU for sharing your stories. Its given me a lot of ideas on how I need to change my perspective and also ways i need to change how I relate to “clients”.

  4. I’m only now reading this almost a year later, but if your more immediate goal is education I would point you to Amanda Bagg’s — a must read for anyone who thinks that people who can’t speak or who don’t SEEM to notice what’s going on around them necessarily can’t think either. But be sure to read the WHOLE THING from start to end. The first few slides are deliberately meant to mislead the reader as to the real message. Set aside maybe 30 to 60 minutes (depending partly how many of the links you follow). It’s worth it.

    Also, use the search engine on this site to find Amanda Bagg’s “non-person” video.

    This is probably too late for Ann, but in case someone else looks at this wondering the same thing.

  5. I just read this myself and have this to say. I am totally blind and know that the world doesn’t just look down on people who are autistic but people with any disabilities because they do not understand that we are just like them we bleed we have emotions and we can think. keep writing as i can hear i guess i should say you have and i am putting this page in my favorites so i can keep reading or better yet i will get an accessible rss reader and go from there.

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