Theme
10:46pm
September 28, 2014
Hands up if large groups of aggressively loud white boys in your vicinity freak you out
One of the things that bonds women, POC, and LGBTQA+ together: The fear of white men in numbers.
Did you mean: Congress?
Also disabled people. Large groups of aggressively loud white boys are the ones most likely to retard-bait me in public and get away with it with people watching.
CW: Sexual assault against developmentally disabled women (and FAAB trans folks presumed women at the time), described in detail, below cut.
411,222 notes
4:41am
August 17, 2014
“without us you wouldn’t have any rights!" without you we wouldn’t have to fight for them
Always this. Always.
"Remember that men gave women the right to vote!”
And remember that men should never have been at such a social and political advantage as to be able to literally give and take away rights from groups of people.
OMG THIS
I’ve heard this from parents of DD kids before.
“Parents are the heart of this movement,” said one. I will never forget him. He was one of the worst piece-of-work assholes I’ve ever encountered connected to the DD movement. (The DD movement is confusing. There’s a self-advocacy movement, and there’s a parent movement. And there’s overlap where both work together. And you can’t always tell what you’re dealing with.)
Anyway this guy told me:
“You self-advocates didn’t have a voice until Gunnar Dybwad came along and gave you one. You should let parents be the ones who make the decisions, and then we’ll tell you what we need you to do, if anything.”
If I had not been learning self-control I would have chucked my keyboard at his head. Loss of a good keyboard, though. As it was, I used every bit of body language I learned from how to intimidate dogs, and proceeded to get his attention by spreading my legs apart really wide, planting them into the ground, making eye contact (aggression and love are the two circumstances I can do it, and believe you me this was not love) and repeating “What about us!?!?!” over and over until he couldn’t ignore me.
And that’s when he launched into the speech about Gunnar Dybwad and how self-advocates never got anything done on our own and how parents were the heart of the movement and self-advocates just had to do what we were told.
I later found out that he had institutionalized his developmentally disabled son and only intervened to get him out after he’d been more than once beaten within an inch of his life.
I later found out that he’d illegally gotten his wife to sign over her rights to him when she was not of sound mind (he gave an account of this on a mailing list, talking about how he hoped the notary didn’t notice his wife couldn’t speak a coherent sentence and kept referring to her dementia as a “thyroid condition”). He then starved her to death on his living room couch for a week, claiming that the person she was with dementia wasn’t her anymore so this wasn’t murder. He now brings this up and said “Nobody would call me a murderer for this.” Except lots of disabled people call him a murderer for exactly that.
He has announced plans that if he ever is going to become severely cognitively disabled like his wife or son, he would go out and fake a climbing accident so that he could commit suicide but his family could still get the insurance money. Because he would never want to put his family through having the kind of relatives that he had.
He has forced his daughter into psychiatric commitment before, and thinks she still adores him totally and trusts him completely. From all anyone can tell, she doesn’t. (Many of her psychiatric problems were due to having to watch the above stuff going on around her, mind you.)
And he believes himself a champion of the rights of developmentally disabled people.
He makes me sick. Physically sick. Just to think of what he’s done to his family, and his belief that he could be the heart of anything. He barely seems to have a heart.
He terrifies me.
And apparently his line about “You self-advocates didn’t have a voice until Gunnar Dybwad came along and gave you one” is so recognizable to other self-advocates that someone was able to tell me his name based on my repeating that line alone. Ditto “Parents are the heart of this movement.”
I feel so, so horrible for his son. There are no words.
But his take on the whole thing was that parents and professionals gave self-advocates our voices, rather than that self-advocates have been doing our advocacy work for hundreds of years unnoticed, and if Gunnar Dybwad helped us get noticed, it hardly means he created us. We have been resisting and organizing ever since we have ever been put together in one spot. To believe anything else is to believe we’re stupid. We’re not stupid.
He’s one ‘ally’ I never want, ever. And he’s patronizing as all fuck, He’s the worst of the worst of the worst parent allies I’ve ever encountered. and all the worse because he doesn’t see himself as an ally. He sees self-advocates as allies to his movement, which is for parents. He sees us as people to trot out when you need a song-and-dance routine to show the “human face” of your movement, but that everything we do must be choreographed by someone like him.
It’s like when I tell people of the self-advocacy group who single-handedly closed a large institution. Everyone tells me, “It must have been the parent advocates, with some help from self-advocates.” No. Parents weren’t even involved. DD people went into the institution and talked to people there so the would be involved in their own liberation. DD people got help when they needed help, but they were always in control and they always asked for just the help they needed, nothing more. And they won. That institution was closed and its inmates made it into community living. All because of DD people, no assistance needed beyond what they asked for, from lawyers and stuff.
Want to read about it? People First Win Freedom in Tennessee. No fucking Gunnar Dybwad in sight. I mean I’m sure Dybwad was a good man and that he’s being unjustly portrayed by some people. But we did not need him in order to close this institution. And we did not need our parents tagging along either. We (I wasn’t there, I’m using we as in DD people in general) did it entirely by ourselves, with only the sort of help that nondisabled people would enlist if they needed help. We didn’t get “special” help, I’ll put it that way.
Anyway the Gunnar Dybwad line sent chills down my spine because this asshat was making it sound like like “He gave you your voice and we can take it away from you again, so do as I say.”
Meanwhile the other nondisabled people in the room were little help. They were too busy whispering about how amazing it was I could type. They’d seen me all day, pegged me as too low-functioning to type without assistance (or possibly understand anything or type at all). So while I was trying to tell this guy off, I heard whispers of “amazing” and “incredible”… and that’s when I first got it through my thick skull how people really saw my outward appearance back then. They saw me as a potted plant, and were amazed that the potted plant understood what was going around it and could even respond in words. That’s how people saw me, I realized, and suddenly my entire life since adolescence.
Also, if you want to read about 'allies’ like him, read Identifying, Educating, and Empowering Allies by Phil Schwarz. It’s got its problems, but please don’t expect me to answer for them just because I’m linking to it. You’ll be particularly interested in the section on “pseudo-allies”. (Which is what some people use the word “ally” for these days. Which pisses me off. There are real allies and without them we have no chance of succeeding as a movement. Pseudo-allies are pseudo-allies, allies are allies.)
4:39pm
July 11, 2014
“People living at the blunt end of service constantly cope with philosophical shifts. Like medieval serfs they await decisions from the castle of how their lives will be lived. Oppressors always portray themselves as liberators. Every dictator deludes himself with false rationales of little people benefiting from his magnitude. We who hold the power in human services are no different.”
— Dave Hingburger, “Can Opener Freedom”, A Real Nice But
10:50pm
May 25, 2014
Thoughts about Romeo & Juliet.
I keep thinking about a version of Romeo and Juliet where both of them are developmentally disabled. One of the common complaints I hear about the story is that the two of them don’t talk enough to know that they’re truly in love. and looking at the script, I can kind of see that. That’s because they do most of their “talking” without words. Imagine them going to the dance and all of a sudden seeing someone on the other side of the dance floor with the same body language as they do, which they’ve never seen before. And they can tell the way the other is feeling by how they hold themselves. And they quickly decide to steal off somewhere, and as soon as they get out of eyesight, they start doing all sorts of weird things together with their hands. And quoting bits of poetry about “courtly love” and “religion” at eachother. Which maybe doesn’t make much sense. But all the important stuff is going through their hands and through the way their shoulders are slowly relaxing.
R & J on Juliet’s balcony staring up at the stars together and marveling at them. And then waving their fingers in front of the stars, making collaborative patterns against the shape of the Milky Way, until they feel like they are themselves part of the night sky.
Romeo, hyperactive, with stuff flying out of his mouth and he *knows* it’s stupid, but his mouth is quicker than he is sometimes.
Juliet, finding ways to remind her nurse that she’s plenty smart even if she doesn’t “look like it”
Especially if they were played by two disabled actors - I would totally watch it!
In the movie “The Ringer” there was a segment where Romeo and Juliet were acted out by actors with developmental disabilities. (Playing characters with developmental disabilities who also happened to be actors.) It is worth watching that movie – most of the DD characters are played by DD actors – ID actors, in particular.
5:25pm
May 25, 2014
#ActuallyDD
I don’t know if anyone’s noticed, but I’ve started posting on this tag. It’s meant to mirror tags like #actuallyautistic and #actuallyADHD, and I’m not really sure if anyone’s going to be interested in posting on it or not. But I figured if I don’t tell people it’s there, nobody will post on it.
Basically it’s the same as any other #actually[anything] tag. Don’t post there if you don’t have a developmental disability. (That means if you’re a parent, sibling, caregiver, etc., do not post there unless you also yourself happen to have a developmental disability.)
I hate to try to define developmental disability, because it’s really a sociological category more than it is a medical category. It’s a group of people who’ve become linked together by a common history in certain cultures, rather than a group of people who all innately have specific things in common. But I’ll try to describe the legalistic definition of developmental disability just so you have an idea who might be posting in this tag.
So…
A developmental disability is usually defined as:
- Starting at birth or in childhood (before the age of 22, is usually the cutoff)
- Causing difficulties in at least a couple areas of daily living (generally called adaptive behavior). A fairly standard list of these areas is: communication. self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety.
- Not a psychiatric condition or a specific learning disability (although those things can go along with it).
That last bit shows you how arbitrary it is in some ways, both “developmental disability” and “psychiatric disability” have a lot more to do with accidents of history than shared physical traits.
The most commonly named developmental disabilities are:
- Intellectual disabilities (used to be known as mental retardation)
- Autistic spectrum conditions
- Cerebral palsy
- Muscular dystrophy
- Childhood brain injury or stroke
- Fetal alcohol spectrum conditions
- Childhood epilepsy
But there are lots of others. Many states have a thing where they’ll give DD services to people under certain diagnoses (autism, epilepsy, CP, ID) and then have another category that’s a catch-all for basically “anything that causes functioning issues similar to the ones that are named”.
Sometimes there’s conditions that seem to be considered a developmental disability sometimes but not others – ADHD, Tourette’s, blindness, and deafness, for instance. I have no idea how that works. Also there’s a lot of conditions called ‘neurodevelopmental disabilities’. If you fall under any of those categories and feel like you have a DD, that’s fine.
But basically if you feel like you fit under the category of DD, I’m not going to sit here and be some kind of gatekeeper. The government does enough of that. I won’t try to chase you out. The only time I’d have a problem with someone being here, is if they didn’t have a disability and were just here because they had a child with a disability, or a friend with a disability, or were a caregiver, and somehow felt it was their right to come here, because such people often feel like it’s their right to barge into places that are only for disabled people ourselves.
And just like most people in #actuallyautistic, I’m not going to chase away people who are self-diagnosed, either. And if you’re unsure of whether you fit, it’s fine to post here. As long as you’re posting in good faith, that’s all anyone can ask. The only people who are specifically unwelcome are people who know they aren’t DD and are posting here anyway because they just feel like they have a right to for whatever reason.
The tag is just for anyone who has any developmental disability of any kind and feels for some reason like they want to post in this tag. It may be I’m the only person who’s ever interested in posting here, or it may not. But I thought it would be interesting to tell people about the tag and see if anything happens.
8:11pm
May 6, 2014
➸ There is not one autistic community.
I’m just talking about the English speaking world here. Outside it there is even more variety.
Online alone, there are tons of different mailing lists, web forums, blogging circles, and social networking groups by and for autistic people. Some of…
“This autistic community, at this point in time, self selects for autistic people with certain traits. Not everyone in this autistic community has those traits, but more so than in some other autistic communities, and sometimes it’s a vast majority.
* Able to use words
* Able to, at this point in their lives, speak, much of the time
* Well educated
* White
* Does not want a cure
* Prefers autistic person over person with autism
* Normal to high IQ
* (often) good with abstract intellectual stuff
* what Donna Williams would call more “interpretive” than “sensing”, and if not, at least able to shift into interpretive mode to interact
* Better at words (text at least) than body language
* Better at reading and writing then understanding speech and speaking
* Lots more stuff, including both specific autistic traits, specific life experiences, and specific beliefs about the world.”
I am all these things (well, with the possible exception of the “specific life experiences” and “specific beliefs about the world”, since I don’t know exactly which beliefs and life experiences youneedacat means here)… and yet, somehow, I’m not really part of (or don’t think of myself as part of) “the autistic community”. I mean, I do have links to it - I’ve been to Autscape 3 times (although I’m not sure if I’d go again), and just recently I went to an autism research event that was organised by people who are well-known “autistic community” people. But there are norms in that community that I don’t relate to (the expectation of everyone being a certain sort of “nerd”/”geek”, who understands the inner workings of computers, and who only wants to socialise in certain “geeky” ways, for example), and also I actually don’t find it any easier to get on with other autistic people than with non-autistic people (in some cases it’s actually harder, because certain types of difficulties get doubled rather than eliminated).
(In fact, the category of people I probably get on best with, if it’s at all possible to generalise, is people who are not autistic but not quite NT either… and/or people who are perhaps “neurotypical” but who are disabled in other ways that gives them experience of being outside the social “mainstream” - I think this goes for some non-disabled queer and/or trans people as well.)
I dunno, I thought I had more of a point about “autistic community” there. But yeah… I am autistic and that’s something I am very out about and an important part of my identity, but I still don’t really feel like “autistic community” really “works” for me. It’s too narrow, or something like that. I strive for community based around radical acceptance (as opposed to “tolerance”) of difference, but I don’t just want it to be around any *one* category of difference.
Interesting…
I’m not good at finding communities that ‘feel like home’ – some people seem to be 'coming home’ all the time, and that’s an experience I often actively distrust in myself.
But if there’s any community that’s ever felt like home to me, it’s the developmental disability community – or rather the best parts of that community, since there isn’t just one community there, either.
And part of the reason for that is that the community isn’t based around your traits. Like, yes, it’s for people who have been or could be categorized as having any of a range of different diagnosis. But there’s a community norm that says your diagnosis isn’t important, that who you are is important, that being a person is important, that diversity is important.
Which also tends (where I’ve been anyway) to translate into a lot more diversity. There’s disability diversity, racial and ethnic diversity, class diversity… and none of this because of some kind of abstract commitment to diversity and bean-counting and tabulating, but rather because of a commitment to people being people, on a deep level, on a way that doesn’t tend to result in certain ways of shutting people out that are common in a lot of communities.
And while it is a community based around disability, and while disability is an issue that is taken quite seriously within the community, there’s this idea that disability doesn’t quite… matter… in the way that it does in the rest of the world. It’s a community with a large number of people who’ve experienced having our humanity completely submerged under a disability label, and that’s where the idea that we’re people first becomes so important. And when done well, this doesn’t mean ignoring what makes us different from each other in terms of disability, but it does mean putting our common humanity first and letting the diversity come from that shared central theme. I’m not doing a good job describing it, especially since it doesn’t fit well with most people’s preconceptions of… anything.
What disability experience is shared, isn’t so much a diagnostic experience as an experience of being put into a more general social category and treated certain ways based on that category membership.
And when it comes to diagnostic categories, we pretty much span every type of disability, so we’re already "cross-disability” without even trying to be. (The most commonly described developmental disabilities are cerebral palsy, autism, intellectual disability, epilepsy, childhood brain injury/stroke/etc., fetal alcohol syndrome, spina bifida, and some other things. Sometimes also blindness or deafness or chronic illness, especially if it comes attached to any of the other disabilities by way of a syndrome or common point of origin. That already spans physical disabilities, cognitive disabilities, chronic illnesses, chronic pain, and some things that have some elements of psychiatric disabilities. Not that everyone in those broader categories is developmentally disabled, but that developmental disabilities encompass some things that fall under, or incorporate elements of, every one of the major disability categories. So, instant cross-disability situation.)
So if I had to pick a disability community, would be the DD community every time. It’s been more welcoming to me than any community I’ve been in. It has more diversity of every kind, and that diversity comes about in a natural, organic sort of way that feels real and not put-on for show. We tend to share certain common experiences in how we are treated by the world, even when we don’t share common body-based experiences of disability. And the lack of common body-based experiences of disability, and the lack of emphasis on that as the important part, is a plus for me, not a bad thing. It’s a place I can go to and while I may experience some bad things (every community has its faults), I’ve always felt like my disability status and life experiences make me seamlessly blend in, in a way that I don’t blend in anywhere else in the world, and that alone makes it, some rare times, the most beautiful group social/political experiences I’ve ever had.
And the mainstream autistic community is pretty much not any of those things that make the best parts of the DD community amazing.
10:46am
April 14, 2014
Loretta Claiborne, “Let’s Talk About Intellectual Disabilities”, TEDx Midwest.
I’m always incredibly gratified to see people with developmental disabilities in settings that are generally full of intellectual snobbery. Because the rest of the time, I’m wondering “Where are we in their world?” I once went to a self-advocacy conference and two days later I went to MIT. At the self-advocacy conference I was totally welcome and felt a belonging I rarely feel anywhere. At MIT I felt like I didn’t belong, like I was trespassing and would be unveiled in an instant as one of those people who doesn’t belong on a university campus – something I’d been told many times when I tried and failed to go to university. I did my best, while I was there, to open it up for people with developmental and intellectual disabilities, but I don’t know how much good I did. I got angry more times than I can count, for reasons I couldn’t even name. And I get angry the same way when I watch TED talks, it’s the same bunch of people there as were at MIT, the same mentality.
At MIT it didn’t matter how much they reassured me that I belonged there. I knew I really didn’t. I knew it every time anyone told me my “real IQ” couldn’t be as low as it was last time it’d been measured. I knew it every time someone made it clear I was only interesting insofar as I had talents to make up for being disabled. But I did my best to make it so I belonged there, to change the environment so that more people could follow me there. And I don’t know how much change I made in just a few days. But I tried.
So to see someone with an intellectual disability presenting at a conference full of intellectual snobbery makes me overjoyed. It’s not everything but it’s a start.
4:42pm
December 20, 2013
Join the Partnership for our Lunch and Learn Webinar series
Do you need more information about what types of services are available in the Intellectual Disabilitiy (ID) System but don’t have much time? Are you struggling with accessing what you or your family member needs? Do you want to know how each step in the process affects services?Join us for the entire series or for any individual sessions that interest you. Each training provides time for questions.
All sessions are on Fridays 12 PM - 1 PM.
For descriptions of each session, please see the Partnership website.
- JANUARY 24, PUNS: Prioritization of the Urgency of Need for Services
- JANUARY 31, Intellectual Disability (ID) Waiver Basics
- FEBRUARY 7, Services in the Intellectual Disability (ID) Waivers
- FEBRUARY 14, Individual Support Plans (ISP)
- FEBRUARY 21, Adult Protective Services (APS)
- FEBRUARY 28, Participant-Directed Services (PDS)
- MARCH 7, Work and My Benefits
- MARCH 14, Ticket to Work and Other Resources for Employment
- MARCH 21, What Are My Rights in the Intellectual Disability (ID) System?
For Your Information
These sessions are open only to self-advocates and family members due to resource limitations.
Annoyed that Pennsylvania seems to have an intellectual disability system rather than a developmental disability system. Developmental disability is inclusive of many, many disabilities. At minimum, intellectual disability and autism are covered under DD systems and waivers. Sometimes cerebral palsy and epilepsy. Sometimes also “similar conditions”. Intellectual disability doesn’t mean all those things. It means just intellectual disabilities. If it’s used to mean DD, then it confuses people about what services may be available for who. If it’s used just to mean ID, then it excludes lots of people who need the services unless they meet an IQ cutoff that’s unrealistic for a lot of people. At any rate, it’s annoying.
2:38am
November 1, 2013
➸ "You don't need this junk. You need a cat.": thegreenanole: madeofpatterns: warlocksexalways: Disability “allies”...
Disability “allies” who care more what authority figures say about us than what we say for ourselves (ie anti self-diagnosers)
Disability “allies” who think our peer support is disastrously preventing us from “getting the help we…
I love that tag.
And a thousand time *nodnodnod* - I seriously want to do an anthology of these stories. Know your rights stuff too.
I’m actually currently at our RI statewide self advocacy conference and actually very spoon less so I will respond in more detail later but I have many similar stories. Too many. Down to getting blacklisted from local self advo stuff.
When the budget was cut the self advos who worked as receptionists in our agency’s office were let go first. The executive director’s daughter, hired as a nutritionist, was allowed to stay. And when I complained - both women were devastated, their jobs were really important to them and they took pride in them, for one it was her alternative to a horrid sheltered workshop but they were like your friend, not about to bite the hand that in their eyes fed them - and I was told in front of them that the jobs were only transition jobs, supported employment.
BS. They’d been there for years with no mention of being temporary.
So many stories. Will tell them. But too sick and spoon less right now.
But we need systems reform. We need more involvement. We need to somehow get in there.
More later.
(We need more conversations like this.)
Yeah ideally such an anthology would include some way of letting people unable to read have their stories transcribed so that they can participate as well. Because I bet they have this done to them a thousand times more often than people who can read.
I’ve always wanted to do an anthology, or rather a group of anthologies on different topics, but I’ve never had the time or energy.
And I’ve found myself far more interested in the general-DD self-advocacy movement than the autistic self-advocacy movement. Mostly because on the whole we tend to be more about actually getting our goals done, than about a lot of the weird side-tracked stuff that happens in the autistic movement. Not that bad things don’t happen there too, they’re just different bad things. I think DD people on the whole are far more aware of our common problems that need to be solved, than autistic people on the whole, because DD people in general (which includes but isn’t limited to autistic people) tend (and that’s a tendency, not an absolute) to be more in a common situation than autistic people in general do. For reasons I don’t quite understand. I mean there are tons of differences between various DD people’s experiences that shouldn’t be forgotten, but DD tends to mean a more common experience in general than autism does. Maybe because it's not a diagnosis, it’s a system that most DD people are subjected to. And that’s why we tend to have it more together, because (a) we’ve got a far longer history of organized self-advocacy, and (b) we tend to be more aware on the whole of what can be lost if we don’t do something. There also tends (tends, mind you) to be more inclusiveness of people with a wider range of abilities, and less focus on what exact diagnosis a person has, because that's not the point. The point is getting stuff done.
And it’s far easier to strike up a conversation with a bunch of politicized DD people (including autistic people, but in a DD-oriented setting) than it is to strike up a conversation with a bunch of politicized autistic people in an autistic-oriented setting. And easier to feel included in the actual discussion regardless, and not just as an “honorary aspie”(*) or as “that one LF (*) person that we let come here because she’s different than Those Ones”.
(*) NOT a label I put on myself, a label others put on me.
But the big problems in the self-advocacy movement still tend to be huge ones. And one of the biggest is co-optation by people like the woman I described. Dave Hingsburger writes about it in Cutting the Strings: Suggestions for Self-Advocacy Groups. Which used to be on the web and isn’t anymore and I can no longer get it in the Internet Archive. It’s way too common. But in many ways it’s easier to know what you’re fighting there, because in DD self-advocacy groups the problems often come from without (“facilitators” taking over), and in autistic self-advocacy groups the problems often come from within (any number of problems, only a few of which are people who get into it for status, people who are uncomfortable with certain kinds of autistic people, and people who don’t actually know what the serious problems are that we’re trying to fight, or people who know some of them but only ones they see as specific to their own variant of autism).
2:04pm
July 24, 2013
The physical disability community is not “the disability community” no matter how much they think they are.
When people say the disability rights movement, most people think of the mainstream disability movement. It’s dominated by white men with physical disabilities, especially paras and quads. And very very white and middle class in general.
But it’s not the whole disability movement or disability community. It’s just the one that had claimed the title “the disability movement” because most people think physical disability when they think disability.
But there is also a bunch of psychiatric disability movements. Consumers, survivors, ex patients, mad pride, hearing voices. And there is the developmental disability movement. And the autistic movement. And the Deaf community. And on and on and on. Then there’s the cross disability movement, but as a friend of mine says, lots of people think cross disability just means both Quickie and Invacare". (Two different wheelchair manufacturers. Wonder where that leaves me as a Permobil.)
I’m very leery of the “coming home” experience many disabled people have with disability communities. It seems to create an intense and unreasoning loyalty to the group in question, which renders self examination difficult to impossible, something to become defensive about rather than embrace.
But if I have a home in any disability community, it’s the developmental disability self-advocacy community.
One thing I like about it is that we are not united by any type of disability, except that it started in childhood. The main disabilities involved are cerebral palsy, intellectual disability, autism, epilepsy, and brain injury. We have footholds in the domain of physical disability, cognitive disability, psychiatric disability, sensory disability, chronic pain, chronic illness, and learning disability. They always claim in medicalized contexts that learning disabilities such as dyslexia, and psychiatric disabilities, don’t count. But the reality is that even within the six main disabilities represented, psychiatric and learning disabilities can be closely linked to some of them. So in practice it happens.
We have been brought together, not by a common diagnosis or experience of our bodies, but by which people ended up put together in developmental disability institutions when they began forming. Developmental disability is not just another word for intellectual disability, it covers an extremely wide range of people. It’s similar to psychiatric disability, in that neither one is a classification that makes medical or experiential sense, it’s an accident of history.
But being an accident of history gives us our diverse disability experiences. It prevents us from uniting through common experiences of how our bodies function. Which is a good thing when you’re trying to unite for social change. The more diversity the better.
We are also diverse in other ways. We come from every possible economic background. Many of us are poor and working class as adults, because that’s what happens to a lot of disabled people. But our childhood could have been any mix of classes. We are also racially and ethnically diverse. People of color trend to shy away from the physical disability movement because of how white it is, and same with the autistic community. But that doesn’t happen so often with the DD community. I get the impression that developmental disability tends to be such an intense common experience, especially for people who were in special ed and the adult DD system, that the community involves everyone. Plus people of color are more likely to be misdiagnosed with intellectual disabilities and grow up in this system. Whatever it is, the DD community seems to be the most diverse disability community I’ve ever encountered. In every possible way.
There also isn’t a lot of fuss about who belongs and who doesn’t. I’m sure it must happen occasionally, but I’ve never encountered people in the DD community gossiping about whether this or that person is truly disabled. In my experience that’s more common the more specifically a community revolves around a medical diagnosis. It’s also fairly common in the phys dis community. But I’ve never once seen it in the DD community. We gossip about plenty of other things. My favorite is to gossip about who the worst and best staff is and why. But we don’t tend to gossip about “this person doesn’t belong here”. Which creates a much healthier environment.
The main problems in the DD community involve staff taking over, and disabled people passively following. And staff setting the agenda because they believe we are not capable of setting our own. This happens more easily with us, because we often need staff to help us with cognitive tasks such as organizing. This leaves them in a position where instead of helping us do what’s important to us, they insist on taking over and making us do what is important to them.
I once attended a “self advocacy” meeting run by an incredibly condescending facilitator. She told the “leader” everything to say. She taught everyone to basically recite things she told them. She told me my means of communication took too long and I shouldn’t say anything, even though there were people who talked slower than I type. And she controlled people by gestures. Eye gestures, hand gestures, face gestures, she used to tell people when to speak and when to stop speaking. This was very cunning of her. Because there was a man with cerebral palsy, put there to make sure she couldn’t take over too much. But he was blind. So she did most of her controlling through a means of communication he was literally incapable of detecting.
And she controlled that man in another way, very common when they choose a DD person to represent us in a services agency and supposedly protect us and speak up when abuses of power happen. I told the man what she was doing to control people without his knowledge. This is what he said, more or less:
“Oh god. You have to understand… I really love my job. I have never made this much money in my life. That woman is my boss. I can’t risk getting fired. Please just… never speak to me about this again, I can’t handle it, and I don’t like confrontation.”
That from the guy they supposedly hired to protect us from abuses of power. And they had him under their thumb in a thousand ways.
I tried to talk to the woman running the group, and she became very condescending and controlling. I sort of lunged towards her and ran out of the room. I walked across the street and due to my movement disorder I couldn’t stop walking until I hit a fence.
I came back in with my staff person. And I tried to apologize to the woman for running out. And she started screaming over the top of my communication device. I was so overloaded that the only words I caught, over and over, were “YOU HAVE TO UNDERSTAND YOU HAVE TO UNDERSTAND YOU HAVE TO UNDERSTAND YOU HAVE TO UNDERSTAND!!!" My staff person tried to reason with her but there was no reasoning.
My staff and I both got in serious trouble. That woman made sure the agency wrote me up for all sorts of things that didn’t even make sense.
She claimed that I punched her really hard on her upper arm. There were witnesses. All I did was my hand came near her sleeve – at the wrist – as I ran out of the room. I didn’t touch her and I sure as hell didn’t punch her or even swing at her. Everyone who saw it agreed. But she didn’t like me criticizing her, and she had a lot of power in the agency, so she tried to have me written up for assault.
But the rest was even more ludicrous. I "went AWOL”. And I was “trespassing”. I am an adult. I am allowed to leave any building I want to leave, at any time. I am not required to get anyone’s permission. Also, in California, walking into sometimes driveway until you hit the fence is not trespassing, and it’s especially not trespassing when it’s caused by a movement disorder. So it’s impossible for me to be AWOL, absent without leave. And I wasn’t trespassing. And I never hit her or even touched her, let alone punched her really hard on the upper arm. The lack of any mark or bruise should’ve been a major clue. So should the fact that she reported me to the agency, not the cops. All three of these accusations were her revenge, as a powerful staff person, against me for speaking out about how she used power. It happens in the worst parts of the DD system constantly. It’s a way of keeping us under control, and a kind of slander.
Meanwhile, for standing up for me when I was being screamed at, my staff person was labeled a “dangerous, renegade staff”. And she got a lecture from the higher ups at the agency as well. We both had to go in and get talked to by someone in the agency about our “bad behavior”. So staff who stick up for us get in trouble too.
That’s what happens when self advocacy groups get taken over by agencies and institutions. Often self advocacy just gets turned into a word for a recreation group (recreation and self advocacy should never be mixed, even if it’s the same people involved in both), or the “group facilitator” takes over the agenda. And anyone who speaks out gets written up for bad behavior. But fortunately a huge amount of the community is not like that at all.
I wrote the following after attending that group:
http://archive.autistics.org/library/understand.html
But anyway. While that’s the really nasty underside of the DD community. The part that’s run by staff, not by us. The rest of it can be some of the most amazing communities I’ve ever been a part of. (And yes, that includes many, many people who want to use person first language. They are not brainwashed. They are not stupid or out of touch. They are not doing it for the same reasons as condescending nondisabled people. Please respect their choices.)
I’ve been part of the DD system for pretty much my whole adult life, and a little bit before that. Yet most people would never think of it being part of the disability community.
4:03pm
July 18, 2013
Painting today. I’m totally exhausted and every bone everywhere hurts everywhere entirely. But it’s totally worth it. (And shorter than some of my doctors appointments.)
I go to an art center for self taught DD artists (same one Larry Bissonette goes to, and he’s here today). I used to go weekly but now I’m lucky to make it twice a year. But they keep a spot open for me and I’m really glad about that on the rare occasions I can come.
I did three paintings.
11:20pm
June 1, 2013
Does anyone have good autism cards?
They have to be for use by actual autistic people, not “my child has autism” stuff. I’m an adult so it can’t be a child thing. I don’t have Asperger’s so the card needs to specifically mention autism – I’d hate to contribute to the myth that the only autistic people who can use words to communicate have AS, and that’s what using a card focused specifically on AS would do if I used it
They have to cover the fact that I might appear rude without intending to. Possibly including things like body language, bluntness, lack of conversational rhythm (interrupting), lack of understanding of social hierarchies, appearance of disrespect that isn’t really there, being overly wordy or unable to use words at all, not responding, startle response, appearance of emotions that aren’t actually there, saying or doing things that would be rude if a nonautistic person said them but aren’t at all intended that way when I say them, etc.
It would be best if it came from somewhere official, but it’s okay if it doesn’t, or if it’s just words for me to print out and laminate myself.
I badly need this. I keep encountering people in the healthcare system who think of me as rude when I’m not, think I’m being hostile or argumentative when I am not, think I’m angry when I’m not, etc.
Some of them are honestly confused, some of them are hostile themselves with a chip on their shoulder about having to treat me, and probably beyond hope. I hope that a card would help the confused ones understand. And for the genuinely hostile ones, a card would be documentation for any bystanders that I informed them about the effects of being autistic and that they are refusing to treat me right because of a disability.
These situations happen the most often when I am highly overloaded and struggling just to string words together and understand their words, and have no energy left over to modulate social interaction. The worst one recently happened just after I began to be able to type again rather than just use the picture symbols on Proloquo2go. (I had been under anesthesia and a lot of strong medications that addled my brain.) I got accused of interrupting, hostility, and disrespect, when I intended none of the above. He told me that I wasn’t treating him like a human being – when he was the one not treating me as human when I was just struggling to communicate at all. I even got told that my computer’s tone of voice sounded rude (I type to communicate). I have little hope that this particular man will ever see the light, but if I had handed him a card explaining things, he would have no excuse to treat me that way anymore, and any observers would understand that something was going very wrong with the way he was treating me.
These are genuine problems that I have had all my life. My body language and facial expressions are very hard for nonautistic people to read. I have a good deal of trouble putting things into words in real time, and can become overly wordy or underly wordy as a result, or choose words that seem rude to other
people. I have trouble following the rhythm of conversations and can seem to interrupt people because of that. I don’t understand social hierarchies and get in trouble for not showing deference to people who believe me to be beneath them. Sometimes I can’t respond to people at all, or can only respond in ways that appear hostile if you don’t know me well.
I know there are autistic people who think that autism can’t cause the appearance of rudeness, and that autistic people who talk about these things are just using autism as an excuse to be nasty to people. They couldn’t be more wrong. I try to respect people, I try to be nice, but my language and body language differences frequently result in horrible misunderstandings. Sometimes even misunderstandings with other autistic people! Some of these misunderstandings can be life threatening, because I have complex and severe medical conditions and doctors often want deference and other social signals that I’m incapable of. I sometimes get substandard treatment because of that, when it’s not just because they think my life isn’t worth anything because I’m disabled (which also happens frequently).
So I need some way of documenting and responding to people who treat me as if I’m being rude on purpose. I don’t need things that refer to me as having bad behavior or misbehavior. I need things that explain that any appearance of rudeness and disrespect is not intentional, with a brief explanation of some reasons why I can appear rude. This documentation will at minimum help bystanders understand when I’m being treated unfairly, and at maximum help the person I’m talking to understand that I’m not trying to be rude to them.
But I’m having real trouble writing such a card. I used to have a whole collection of cards for different social situations regarding autism, that I carried on a key ring attached to my belt loops. But I no longer have such a thing.
It would be ideal if I could find multiple cards, not just ones about rudeness. Also ones about difficulty communicating in general. Ones about my reactions to sensory input, and movement differences, and things like that. Things that explain why I may appear unresponsive or agitated but may understand everything around me. Things that explain that I may have difficulty understanding basic things around me. Each one for a different situation.
Possibly pointing back to a website with decent information about autism. By decent information I mean stuff that goes beyond calling it a social disability. Because to me autism is primarily sensory, cognitive, and motor. Social difficulties are an unfortunate but very peripheral outgrowth of those things. And social difficulties are not just on the part of the autistic person, they are a product of the interaction between two people with very different neurologies. So websites with descriptions of autism that focus primarily on social deficiencies would miss the point entirely, even when the card I’m using is for specific social interaction difficulties.
I’ve thought of ordering the card from the National Autistic Society in the UK, but it’s very long and I’m not sure people would read it. I’d prefer information broken up into separate cards for separate situations. I am so heartily sick of pouring every ounce of energy into communication and getting nothing but hostility and disbelief in return. It’s exhausting and also dangerous given the situations it often happens in for me. Most of my interactions are with medical professionals who are making decisions that could be life and death, and medical professionals are profoundly affected by their own assumptions about the personalities of their patients. I don’t have a personality defect, I have communication problems, and it’s very frustrating when I give everything I have and get nothing but gross misunderstanding in return. Sometimes it’s beyond frustrating, it’s genuinely traumatic to have this repeated over and over again. And there’s nothing I can do to change my language or body language differences, they are too rooted in sensory, motor, and cognitive differences that go down to my core. Also sometimes I appear agitated because I’m very overloaded and people mistake it for anger at them. Or I use a sort of agitated energy in order to force my body to obey me and move the way I want and get words out, and people take it personally (it’s actually a thing, lots of people with parkinsonlike movement disorders have to do things like that, I was so happy to hear of it in a lecture by an autistic guy with atypical Parkinson’s).
Also it would be nice to have a card for etiquette when talking to people who can’t speak. Because I get into a lot of situations where people don’t know how to deal with talking to someone who uses a keyboard to communicate, sometimes by typing and sometimes by pressing on picture symbols. I’ve even had doctors refuse to treat me because communication took too long. Which is bad when the doctor is a urologist who is supposed to be preventing constant UTIs caused by a spastic urethra. You get the idea.
It’s bad enough to face disability discrimination in medical care. I recently had doctors actually decide I would be better off dead than getting a feeding tube that saved my life. That wasn’t because I seemed rude, it’s because they look at me and only see “retard”, either consciously or subconsciously. (When I use that word I am not referring to a diagnosis or a real thing, but a malicious stereotype in people’s heads of a sort of unperson.) But when I seem rude or have other communication difficulties, that only gives them more excuse to deny me care. It’s not fair but it happens to autistic people all the time – it also happens to people who really genuinely are rude or hostile. But I am not rude or hostile and I need ways to document and communicate what is really happening in these interactions. The interactions always happen too fast for me to explain everything. And I end up feeling trapped and cornered and terrified. And somehow my terror gets interpreted as more disrespect. It’s a vicious cycle and I need a way to break it with those willing to listen, and document what is going on for people unwilling to listen.
Oh also I need to probably have an explanation for why my communication can be really repetitive. When I was in the emergency room recently with a clogged feeding tube, one doctor started complaining to another doctor about how I “went on and on and on and on and on” about my medical needs in the situation. The reality is that repetitive behavior and repetitive communication is a normal part of autism. I can’t control it. At all. For a wide variety of reasons. No more than I can control stimming when it happens. And again doctors opinions about my personality profoundly affect the care I receive, or don’t receive. This hospitalization I was actually (in my opinion and in the opinions of observers) probably punished for my communication style. In ways that increased my pain and overload and communication problems and muscle weakness. People don’t take me seriously. They do things to me they wouldn’t do to a nondisabled person, or even to many disabled people with more standard social skills.
I know it’s impossible to control the behavior of these people, especially the ones who think of me as a worthless unperson who deserves to die. But I need a way to show people that what is happening is actually discrimination, not a natural response to a rude disrespectful person. And having cards would be a start.
And as I said, cards for other situations besides misperceived rudeness would be a bonus too. There are lots of situations I could use cards for. I’ve just lost all my cards and am not good at writings short summaries of things like this. And I’m nearing the end of my rope in dealing with people who become hostile to me because they assume I am being hostile to them when I’m just being autistic.
And no. This is not about excuses to be a jerk. Don’t even go there. I do everything I can to be good to people but for some people everything I can do isn’t enough. These are genuine communication problems.
Also I’ve noticed something odd over the years. There is a specific group of people who, when reading my writing (and my word communication is almost entirely typing at this point in my life, with extremely rare exceptions), automatically see me as angry and hostile. Even if I’m feeling happy and friendly and calm. No matter what I am writing about. Some of them are just bullies looking for a fight, but some of them seem to genuinely misread my intentions. And I can never figure out what to do about that. Often they know I’m autistic, some are autistic themselves. They just see a tone in my writing that doesn’t actually exist, and that nobody else seems to perceive. They’re not the majority of people by any means, but interactions with them are always needlessly stressful.
I know that I can’t change how people think of me, and that for the most part people can think what they want. But I need something to do in situations where there’s actually a chance that what they do will affect my life greatly.
I’m so exhausted from typing this that I’m seeing double. My body is still messed up from transitioning back and forth to different seizure meds, going off lorazepam, the anesthetic they gave me a couple days ago, being taken off Mestinon while in the hospital for no good reason at all, and the stress of being in the hospital. But I need to figure out what I can do. This post is a good example of how when I get language problems, one possible response my brain has is actually to become extremely repetitive and verbose. Which is not good for writing autism alert cards.
I want the cards to have sufficient information to explain things in a basic way to people, while at the same time being succinct enough to fit on a card. The card can be around 5 by 7 inches or smaller, possibly slightly larger if necessary. But short enough that a person will actually read it when handed to them.
Other situations for cards include overload and shutdown and oh geez lots of things I can’t think of because fuzzy brain is fuzzy.
9:44pm
May 19, 2013
The thing about wanting a doctor to rescue me or whatever.
My neuromuscular clusterfuck was provisionally diagnosed as chronic fatigue syndrome. Just to have a word for it, so that I could get things, like wheelchairs, if I needed them. That and the ever wonderful central nervous system disorder not otherwise specified, most vague diagnosis in the world, which is how they coded my movement disorder. I doubt I have CFS, but that was the only word they could come up with then, and I needed words, for paperwork.
This was way back 13 years ago.
It was my first case manager ever. And she was terrible. And I mean completely terrible.
She basically made stuff up about me. I didn’t, of course, expect this. I expected some sort of halfway competent behavior. At our IPP (Individual Program Plan) meeting, she told me to sign a paper saying I was at the meeting. I signed it. Then she wrote up an IPP and attached my signature, as if it meant I’d actually signed off on the contents of the IPP. I hadn’t.
It included things like “she has chronic Epstein Barr virus”. No I didn’t. And I never mentioned that virus. Because I didn’t have it. Apparently that was her word for CFS. Except for the fact that it’s not the same as CFS at all. She just made it up on the spot.
Then she said that my condition was psychosomatic (that would kind of contradict the idea that I had a virus, but she wasn’t much for making sense) but that I fervently hoped that one day I would find the perfect doctor who would understand me and be able to diagnose everything.
Okay.
So I looked at my file, to double and triple check what exactly she had been told about me. And nothing was mentioned about psychosomatic anything. In fact, my doctor had listed a number of physical and cognitive disabilities. But nothing psychosomatic at all. Apparently she thought CFS meant psychosomatic. That’s all I can come up with.
She claimed she was only writing what I’d told her. Except that what she wrote bore no resemblance to what I or anyone else had told her about me. I showed the IPP to a number of people who knew me, including medical professionals, and none of them would have recognized it was about me, if my name hadn’t been on it.
Oh and what also angered me was that she wrote that I wanted to connect to the local lesbian community. This was a woman who desperately wanted to seem with it about DD people’s sexuality. She had interviewed Dave Hingsburger at one point about sexuality, and apparently considered herself some kind of… I don’t know what. She was doing that scary thing liberals do when they want to seem like they understand your oppression so well. And she clearly wanted to seem ~tolerant~ of our sexuality.
But all I had told her was I was a lesbian.
I didn’t tell her that I had any ~goals~ related to being a lesbian. I didn’t consider that any of her business.
Anything she said was at best a twist of the truth, at worst a complete fabrication.
But I wanted to talk about the thing where I was supposedly desperate for a doctor who would understand me.
Actually I wasn’t desperate for any kind of doctor at all. I had a phobia of doctors. Every time I had an appointment the next day, I seriously considered suicide as a way to get out of having to go. When I say I was afraid of them, I mean panic that started long before I even got to their office, and ended long after I left.
But there was some stereotype she was using. That really bothers me to this day.
That disabled people are basically waiting around to be rescued by a wonderful doctor.
Worse, I’d had to deal with doctors who engaged in that rescue fantasy with me. And caregivers who sort of engaged in it on my behalf. Who themselves wanted a doctor to rescue me.
Any doctor who wants to rescue me is going to be in for a frustrating experience. In fact, I generally reject doctors who think they will rescue me. Because doctors who are emotionally tied up in wanting to rescue their patients, often take it personally when they can’t. When there’s no cure. Such doctors often lash out at patients with chronic, incurable conditions. Like me. So I’m not willing to put myself in the hands of a doctor who fantasizes about rescuing me from my ~horrible fate~.
And there’s something really insipid about the idea that I sit around all day suffering passively and waiting around to be rescued. That’s not me. That’s not my life. I may have a number of health problems, but I have a life to live now, not in an impossible future where those health problems are gone.
And as for wanting a doctor to understand me, not really. Respect, yes. Understand, I’m not even sure what that means. There’s something about that whole concept. Beyond what she wrote. She was referring to an actual stereotype of people – especially women – with chronic illness. It goes along with a sense of weakness and passivity. And it’s not me. And it’s not many, if any, of us, although I’ve seen people sort of hide themselves within it, as people do with all stereotypes.
Anyway, I don’t know how to write about what I hate so much about that stereotype. What made me so mad I almost ripped up the IPP on sight.
When I told her that I didn’t agree with her IPP, she said “Fine, write your own if you don’t like it.” I of course, being unable to write things on command, could do nothing of the sort. I ended up getting a friend to write it – not just a random friend, but a friend who had worked in the DD system and written plenty of them. But I shouldn’t have had to.
There was a lot she actively lied to me about. She said she wouldn’t call me, and then she’d call me multiple times a day, even after I and staff told her to leave me alone. She told me I was my own case manager if I didn’t like her, but according to records she was still my case manager after that – she just didn’t do any of her job whatsoever. She told me whatever would get me to do what she wanted, whether it was true or not. And people were always telling me how wonderful she was and how I should’ve been grateful to have her. I can’t imagine what world this would all be wonderful in.
My favorite part of the IPP from hell was the part that said I was provocative and confrontational. I don’t know what gave her that opinion, given that I had done my best to be polite to her at the IPP meeting, and had no interaction with her that I can see that way, before she wrote it. But after I saw the IPP, I felt like getting a t-shirt that read “PROVOCATIVE AND CONFRONTATIONAL”.
7:12am
January 13, 2013
What everyday misuse of power in the DD system can look like.
If I don’t get this written down somewhere I can find it, I’ll forget. And forgetting will be catastrophic. Because I need to do everything I can, to make sure nobody else is subjected to what happened to me Saturday morning.
If you’re not familiar with terminology understand this at least: For developmentally disabled people, staff are not people who are beneath us on a hierarchy. They are people with way more power than we ever have. And when they are bad, as this one is, they can be really scary because they are in control of vital parts of our lives, demand to be in authority at all times, and can make decisions about our lives that outright endanger us. And usually be treated like they’re right and we are wrong or even misbehaving when we object. So onward with that understanding.
Right now there’s nobody to fill that shift so the agency sends subs. They usually range from ehhhhh to very competent. This person fell off the bottom of the range and kept falling for awhile until she reached very bad.
And it wasn’t just her technical competence. It was her ethics. Those were terrible. Not that she set out to harm me. But she set out to establish and maintain control. Very old school developmental disability staff. Could have worked in an institution and changed little. And the results were pretty bad.
It all started when she told me she’s not trained to dispense meds (I’m not surprised, when she thought Ensure was laxative) and that someone else was coming to do it. In itself, not bad. She only notified me, however, when they were an hour late. So I got her to call them. But then she started giving them inaccurate information.
Normally, I can’t speak. So I communicate on a keyboard (currently I mostly use an iPod touch or an iPad running Proloquo2Go). And I use some amount of grunting and gestures, especially in situations where typing is too slow.
When she started giving them inaccurate information, I did what I always do for telephone problems: I started typing while simultaneously making “calling” noises. Hard to explain. But they have an intonation easily read as “Hey I’m trying to get your attention here” that when combined with pointing at an iPad clearly means “Can you look at what I’m trying to say, it’s important, important enough to interrupt a phone call, hell, it probably has to do with the phone call”. The more she ignored me (which she immediately did), the more urgent I sounded.
Until she told them “She’s sitting here yelling at me, don’t know why” and continued her conversation. Her tone and words established to the person on the phone that I’m just one more DD person with bad behavior that is exasperating to deal with, and I heard the person on the phone respond sympathetically – to her. I wasn’t actually yelling but that didn’t matter because her word against mine, and to her I was annoying and might as well have been yelling.
So I finally had to stick what I was writing in front of her face so she’d see that it was relevant information. Remember I can’t just up and say “It’s important to the phone call!” The way most people can. I can only use what I’ve got. This escapes her. She does her best to turn her head away from my writing. Even as I’m frantically miming for her to tell the person on the phone everything I’ve written.
She doesn’t of course. Not yet. She just eventually looks at it and then acts like she’s done. Like it doesn’t contain vital information about the subject of the phone call. She tries to ignore me and does that “I’m making an important phone call on your behalf, you stay out of it” thing.
Finally somehow I got her to read the person on the phone what I wrote. Which does of course turn out to be important – the information is that my meds are time sensitive and I can’t eat until I take them.
So then they get into a conversation with each other – again, not with me. This time it’s about how I can take my meds all by myself if I really need to. Which is completely untrue: My movement disorder makes it far too hard for me to do it without at least some help. It’s actually very complicated and every single separate piece of it is impossible enough without combining it together and making it harder. I can’t even physically do the part with the mortar and pestle. It’s all way too complicated for me, that’s written in my file, and these two women who don’t even know me want me to spontaneously develop an ability I’ve never been able to develop, because it’s convenient to them and that’s all they care about.
So I keep of course trying to tell them it’s impossible. On such short notice, all I can manage is a frantic “uh-uh”. She keeps talking as if I haven’t said anything at all. I don’t remember how I convinced them it was important for them to send a med-trained person anyway, but I did.
(Why would there be any need for them to be med-trained if I had overnight developed the capacity to do it myself? It makes no sense. Other than that if it’s inconvenient for them, whole worlds can change to make it convenient, and my fault for not suddenly displaying this new ability I’ve never had.)
So some guy is set to come in 20 minutes. By which time it’ll be time for even more meds. Whatever. Fine. He’s coming. That’s more than I expected from someone who was more interested in establishing her control over me than ensuring I got important medications on time.
And more control stuff followed. She decided what I’d be interested in. Because she saw a kindle on my bed. A regular kindle. She decided she had the exact same kindle even though hers was a Kindle Fire and I had an e-ink display. Not the same, not even close. So she starts sticking it near my face and showing me pictures of animals endlessly. I only know they’re animals because she says so. My glasses are off. But she decides that I very much enjoy staring at fuzzy blobs I can’t make out, and registers neither my disinterest nor my glasses. I’m completely exhausted and staff are usually informed not to make extra conversation with me unless I want it, because I’m often in pain and need to rest. But she decides what I want to do and she thinks that’s okay. I’ve had so much training to be a passive client that I don’t even consider resisting. Later a friend told me that even this and other seemingly innocent things were controlling behavior on her part. I miss that because I’m so used to it.
So the guy comes to do my meds. He’s familiar to me and I start typing out instructions. Except she gets there first and does the same as before – rushes off to have a conversation with him, without involving me, and does her best to ignore my existence or treat it like inappropriate behavior.
For a person who isn’t med trained, she claims to know an awful lot about my meds. I have three bottles that sit by my bed. They’re for 9 pm, 12 midnight, and 6 am. At 9, it’s too complicated for me to do on my own but they’re kept there so the guy who comes by can do them easily. Then the other two are very simple. Simple enough for me to be able to get them, provided someone calls me and verbally prompts me through it. And someone can come help me if it is too hard some nights. So that’s what those are for – any meds that either always or sometimes occur outside the main staff shifts.
But this woman, with no med training or any other reason to know the intricacies of my med regime, decides she knows all about what the bottles are for. The one marked 9 pm must actually, magically, mean it’s intended for 9 am. And it must be by my bed because I can somehow take them by myself, after all, no matter what I or my instructions or my case manager have to say about the matter.
For reference: My morning meds are complicated. Some of them have to be crushed or dismantled and mixed in pudding. Some of them are liquid and have to be drawn in oral syringes. Some of them I can chew up. Some of them have to be snipped open and squeezed into an indentation on pudding in a spoon. In between most of the parts I have to drink Gatorade. The pudding has to be kept to the minimum amount so my stomach can handle it. And none of this is simple or easy or safe or possible for me to do on my own. All I can do is take the various things when handed to me and then eat or drink them.
So what does she do? She picks up the 9 pm bottle, shakes it a bunch of times, says to the guy “Here’s her nine am meds. But I don’t understand. It’s empty. If it were full, she could do it on her own. But nobody filled it.” And runs around looking for the nonexistent meds to fill the bottle that isn’t what she thinks it is, so that I can just take my meds myself, or something like that.
My meds are in a really prominent location that you can’t miss and this guy knows about. But under her guidance, they are looking under boxes and all these weird places. Finally, after a ton of searching. And me hearing her filling his ears with the biggest load of nonsense about my meds that she could possibly think up, going back again and again to “Why isn’t the 9 am bottle filled, I don’t understand it!” and ignoring every sound I make. Finally they ask me where the meds are and where the instructions are. I tell them. I hear the guy finally getting to work.
Now the woman continues to tell me that “there’s some water somewhere that I need to change”. She’s been telling me this all day. All day I’ve been telling her to forget it. It’s my bipap water and I don’t have the brain left to explain how to prevent it leaking. I can deal with day old water better than a leak. She keeps ignoring me and trying to get me to tell her how to do it.
Oh and while she was on the phone earlier. She’d done something I’ve seen before but is too subtle to prove. My 9 am meds are marked some places as 9:30 meds. It depends on different shifts different days. And I heard her using the discrepancy between what I said and what was on paper to prove to the woman on the other end of the phone that I wasn’t just bad for yelling to her, I was also bad for saying 9 when some piece of paper said 9:30. Staff do that to keep their authority and undermine our credibility but it’s too subtle to prove, meaning it works very well for them.
Another thing she kept saying the whole time, was that someone else would come at the end of her shift. This puzzled me because nobody does. But she kept saying it. If believed, it would have made it impossible for me to get some other meds. It turned out in the end that she’d been reading a chart I have for bowel tracking and deciding that if one time segment ended when her shift ended, then the fact that time went on afterwards meant there was another staff shift there. Rather than that, bowel movements can happen any time of day, so the chart has to cover all times of day. It was as if she was so unwilling to see me as an authority on my own life that she had to puzzle everything out from clues that weren’t even clues, rather than ask me. I had to tell her five times she was wrong before she’d even tell me where she got this bizarre belief, let alone listen to my explanations. Because she had to be the one in charge, in control, and in the know, no matter what I said or did.
So anyway the guy gets both my 9 am meds and my 11/11:30/12 meds (can be any of those times depending on the shift) at the same time. Which is kind of bad, but at least he got there. He’d have done it faster if she wasn’t interfering and trying to get him to ignore me.
After he left she asked me for the fourth time about the water, and I told her for the fourth time not to do it. I finally told her that the instructions don’t cover important safety information. That only I have this information. And that I was having a hard time explaining it so it would be easier to wait for tomorrow.
And then I explained that explaining things is really hard for me ever since I spent 5 weeks delirious in the hospital a few months ago, that it’s been hard to do everything including explain things.
And then her whole manner changed. She suddenly thought it was okay I didn’t explain the water. But somehow I knew it was more than that. In her eyes, I should have been capable of all kinds of things I wasn’t doing. And so when I couldn’t do them, she was blaming me. But now that she had what she thought of as a justified explanation, now it was okay for me not to be able to do… the same things I couldn’t do before I got in the hospital.
Which actually made me mad. Her instructions told her what I needed done for me. That wasn’t enough. She treated me like she was in control, in command, and in authority. And if we have even met before, it was very rarely. She has no claim to those rights. But I could tell – I’ve met people like her before. Not in awhile but I’ve met them. And to them, DD people are always wrong and if we contradict them it’s because we are either wrong or trying to get away with something. And to them we are lazy and therefore say we can’t do things we can, and need to be ignored and forced into doing those things. And even the most incompetent staff have more authority than we do.
Oh and? She never fed me. I got the meds guy to do that. It was easier than explaining to her that Ensure not only isn’t laxative, but is the only way I get any nutrition to speak of since going off solid food. But she never even asked about food. Which was bizarre.
She also kept asking me periodically if I should go to the bathroom. Asking is a weird word for it. It was asking sort of but in a really intense way that reached “demanding” fast.
I’m lucky that my current case manager works hard to find me staff who understand me and treat me right. But for the majority of DD adults in the system, including me in the past, this is what happens every day pretty much. We are surrounded by staff who treat us like they are adults and we are children, only worse, we are defective children who can’t be trusted with power or authority or truthfulness about our own lives. This woman doesn’t even know me and she was absolutely certain she knew all kinds of things about me that contradicted everything I said and everything my case manager sets out in the instruction sheets. She could just make wild guesses and be taken more seriously than anything I said about my own body. The only way she finally believed me was when she heard I’d been in the hospital. But I had trouble with all this before I went in the hospital. She shouldn’t have needed me to have an “excuse” for difficulties I’ve had for years, in some cases forever.
She shouldn’t have been trying to rearrange my abilities in the first place the moment they became inconvenient to her. But she did. Because that’s what people like her do. Imagine you can’t drive, don’t even have a car, and someone tells you “drive me to the store because its inconvenient for me to catch the bus”, and every time you say you can’t drive they act like you’re making it up to be difficult. When they actually made up your ability to drive. It’s exactly like that. Except that they can get sympathy <em>everywhere</em> for dealing with a “difficult client” if you object. Whereas if you tell your story people will tend to identify with staff no matter how outrageous their behavior is.
So yeah. That was my Saturday morning. It threw off my entire day and I still feel like crap.
And for reference. Subs are normally exhausting. But they are not normally like this at all. They usually follow instructions on the papers my case manager gives them. If something’s different, they listen to me. The very occasional one won’t believe me and tries to call people who don’t even know the information to verify whether I’m right. Which is not good, but not anywhere close to as bad as this. What made this woman stand out was that she insisted on keeping all the authority on my life to herself and other staff, while giving me close to none and even that little bit grudgingly. Which included taking ordinary behavior on my part and making it sound like misbehavior. And also included ignoring a good deal of my communication and pretending I wasn’t saying anything at all, and trying to get everyone else to listen to her and not me. All on her first day working for me, because in the minds of people like her <em>simply being staff</em> gives them authority over people they’ve never met. Well, in the minds of people like her, DD people aren’t actually people. We may have human bodies but something important is missing in our minds, therefore their authority over us is justified.
Writing this by the way has given me a nasty headache and worn me out badly. But I had to somehow write it all so I don’t forget. I forget things too easily lately and I can’t afford to forget this before I manage to tell anyone who can at minimum keep this woman away from me. But it’s her other clients I’m worried about. She was too practiced at manipulation for it to be anything but second nature to her, she clearly pulls this crap on people every day. And especially for people with communication problems, she scares me.