I’m re-watching the Community Imperative conference video, and they talk about a self-advocate named Brian Hall, born in 1939, who had died recently when the conference was being put on. He spent a good chunk of his life in Sonoma Developmental Center. He spent a lot of his time while out fighting places like that. And one of the things he said over and over, was “I want to be considered a man, and I want to be free.”
Well… I want to be considered a woman.
I was talking to a friend last night, and I tried to count, in the offline world, how many people treat me as a human being, and as an adult. When you can count them on your fingers, and remember them by name, that’s not a good sign.
This might surprise people who only know me online, and have always treated me as an adult and a person. I will try to describe what happens in my offline life.
People do not view me as capable of coming up with my own opinions. They assume that my stated opinions are because someone else told me to have them. (In some cases, they do this with me and a friend even if I’m the one who influenced her, not the other way around.) They try to separate me, sometimes forcibly, from people they assume are influencing me.
I have, as an adult, been approached with the “We have a toy in the car, would you like to see it?” routine generally reserved for children. The people doing this routine also tried to tell me that they’d “be my friends”. (While touching me and talking about sex.)
Most people speak to me in the same voice that even children shouldn’t be subjected to (but they often are).
When I read descriptions of what makes for mature, responsible adults, they often make it clear that it is impossible for me to fulfill the criteria. Only children, sometimes only infants, are said to need, or deserve, certain kinds of assistance I require, and adults are expected to know how to do things I probably am not going to learn in the near future.
My abilities, such as self-care and speech abilities, are compared to an age-based norm and I’m said to be at such-and-such a “developmental level” in each area. Areas I am not good at compared to the average person are regarded as “delayed” development, and equivalent to children the age at which the average child’s abilities superficially resemble mine in whatever way is used to test that area. I’m treated accordingly. (Aside from that, one of my re-evaluations for in-home support services describes me as presenting as “unusual, odd, bizarre, childlike”. And I guarantee you they didn’t mean “childlike sense of wonder”.)
I just got called for a phone survey two nights ago. I tried to answer in my extremely limited speech, was first asked if there was an adult in the house, then after they figured out I was an adult, they tried to find “someone else in the house” who actually understood what they were talking about, even though I understood perfectly well and there was nobody else in the house. Then they hung up on me when the two noises I was able to make weren’t sufficient to answer an either/or question. (This kind of thing plays out similarly off the phone, too.) I called them back on a relay service to explain everything to them, and they called back today but immediately hung up on me.
When I was 24 years old, I told my doctor that I might want to have children at some point in the fairly distant future, and asked her for technical information about it. Instead of giving me information, she spent the rest of the visit trying to impress upon me the fact that children are a Big Responsibility and that, in her opinion, I shouldn’t have them, ever. She assumed that I had no good reasons for considering children and that I was incapable of understanding the responsibilities involved. (One thing I am curious about is how many young mothers truly understand the responsibilities involved until they are home with their baby — and how many young mothers get such an impassioned lecture from their doctor about not understanding, unless they’re also underage.)
Very few people realize I’m as sexual as most other women my age, and when they do realize it, many would rather I weren’t, or would at least rather I not have a partner. If they find out I’m gay, there’s a higher than normal chance that they think I’m really actually straight but either “immature” or “talked into it”, or that I shouldn’t talk about it. (And all of the above can be seen as threatening or dangerous, even though it’s not. It would also be easy to prevent me from acting on it if people wanted.)
People try to make decisions for me, and if I don’t agree with their decisions, they assume I don’t have a good reason for disagreeing.
I’ve been told that people with the particular non-academic difficulties I have, are not capable of being responsible adults, and therefore simply do not belong in adult academic environments.
When I am in a situation where I need to type something and have it read by someone else, that other person quite often leaves out parts they don’t feel like saying, even though they would be furious if someone censored them in the same way.
I can’t leave the grounds of my apartment complex, alone, without someone deciding I’m lost and need protection. I have not been able to do this since I was a teenager. People do not respond to my assurances, when I can make them, that I am just fine and don’t need any help. I have even been detained against my will for this.
I’ve had complex, well-thought-out views dismissed, and then I get treated as needing to have things explained to me veeerrrryy sllloooowwwwllllyyyy. For instance, my critiques of the standard measures of cognitive skills in autistic people (critiques that are even backed up by research), have caused people to gently pat me on the arm and explain to me very slowly and carefully that some people are smarter than others and not everyone learns on the same level.
I’m frequently told that I have no right to expect what other adults like me in everything but disability expect all the time, even that I have a massive sense of entitlement for, for instance, wanting to eat regularly, or wanting people to listen to what I have to say as much as they listen to anyone else, even though it takes me longer to say it.
People often directly contradict things I say about myself that nobody else could know, and they are listened to, not me. (For instance, if someone asks how I’m doing, and I say I’m in a bad mood, someone else might say I’m actually doing great. The other person is believed over me.)
I’ve also been put on the usual pedestal of childlike innocence, and seen the nasty underside of that pedestal.
I hear things often about how much more difficult it is to go places if I’m there, generally in the same tone as someone who feels some obligation to drag their kid sister along places but doesn’t really want to. I’m expected to listen to this passively and without comment, or I’m making trouble.
I recently sat in an office asking questions about what the rules were there, and being told “The rules are to do what we tell you,” right before watching another disabled woman try to say “hi” to someone and being told that saying “hi” was inappropriate social behavior. We are expected to do this unquestioningly, and many of us do. Those who do not are treated like naughty children.
I am often the last person to be consulted when major decisions are made about how I am going to spend my life, and often the “consultation” basically consists of telling me what to do regardless of my opinion on the matter.
My primary staff person, who is on a personal level self-admittedly uncomfortable with the whole concept of power imbalances and panics at the mere mention of politics, tries to impose these views on me and generally gets away with it, since arguing can jeopardize my services. This usually takes the form of, even after seeing something blatantly (as in, the vast majority of people would recognize it as such) wrong going on in terms of prejudice or power, explaining it away in terms of individual circumstances that have nothing at all to do, ever, with prejudice or power, and implying that I have no real reason to be upset by it. Since she’s good at her job, and since contradicting her agitates her so much that large amounts of time are lost, I mostly have to sit there and take whatever convoluted excuses for other people’s behavior that she throws at me. Meanwhile she denies the very notion that she has any power in my life, because she doesn’t want power or privilege, therefore she doesn’t have it, apparently (and ignoring power is a good recipe for abusing power, something that I can’t get across to her because she doesn’t view herself as the sort to abuse power, therefore she doesn’t, or something).
If it were not this situation with the above staff, it would almost certainly be something equally problematic or worse, given the staff I’ve seen in the developmental service system. Interestingly enough, my neighbor who is classified as physically disabled for the purpose of funding (you can be one or the other here, not both, and both she and I are technically both, but we are in different systems), rarely has to contend with this level of condescencion or people trying to run her life right down to her thoughts, even though she needs staff to do similar tasks to the ones mine do. Not that she doesn’t encounter it, she just encounters it far less than I do.
I’m often given prerequisites for being considered a woman, that women who are by default considered women (which varies depending on situation), are not generally given. They can violate those prerequisites right and left, and often do, but if I violate them it justifies being treated like a child or worse. I am often required to prove I am an adult by more than showing people my ID.
There is a good chance that, if I wanted to smoke or drink, people would try very hard to prevent me from doing so, not in terms of talking me out of it but in terms of the same ways children are prevented from doing so. I don’t want to smoke or drink, but if I did, being overage would not necessarily be enough.
Similarly, there are many irresponsible choices that adults are generally allowed to make and deal with the consequences, that I have not been allowed to make at all, or when I do make them, my status as an adult is questioned.
(Example from outside my life, on that one: I remember watching a movie once, based on real events, where a married couple with intellectual disabilities had a fight, and the husband stormed off down the street while the wife yelled at him that he was stupid. The wife’s social worker ordered her to get inside the house, and she told her social worker she was not a child. The social worker said, in classic patronizing social worker tone, “You act like an adult and you get treated like an adult.” The thing is, lots of married couples have fights of the exact same kind and are not sternly told to “act like adults” before they get to stop contending with social workers ordering them to go inside. And the scene in the movie was very familiar to me from real life.)
I’m expected to experience being treated like a child as compassion and caring, when most adults (and many children) would find being treated the same way to be condescending and patronizing. If I don’t like it, it becomes my problem, somehow.
The list could go on for pages. I again know this could all come as a shock to people who only know me online. It does often come as a shock, when people who know me online get to watch how I’m treated offline. It seems that disabled people in general, and developmentally disabled people in particular, aren’t “full adults” by a lot of people’s standards. The result of all this, at any rate, is that I sometimes even find myself wondering if I am really an adult, because I rarely see any models of adulthood that include people like me, and I so rarely am treated like an adult. Of course, I am, but for anyone to have to contend with this level of ridiculousness on a regular basis seems… well… ridiculous. But it’s pretty much business as usual for me, and for others like me, so much that we often forget it’s happening and forget we could be treated any differently.