I had an ISA meeting. That’s Individual Support Agreement. At the last second, they brought a Surprise Administrator. That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers. Surprise Administrator (SA for short) was someone who works in the Howard Center administration. Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m
The ISA is Vermont’s version of a person-centered plan. It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan. The meeting was certainly not very person-centered. It degenerated into a shouting match mostly. And a lot of it was the Surprise Administrator telling me that I was off-topic. At my own ISA meeting. When attempting to explain my ISA goals. Which were “off-topic” because they didn’t like
So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.
This moment of comic relief came at an unexpected time.
I had defined my first goal as survival.
I meant it.
I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.
So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:
Surprise Administrator: Survival isn’t a goal. Laura: Yeah it is! Surprise Administrator: It’s a vague goal. Laura: What’s vague about it? If her heart keeps beating… Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff. Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag) Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!
After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident. Especially given how sleep-deprived I was at the time.
So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.
It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.
The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.
It was started by a guy with a colostomy. The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc. It’s mostly about colostomies but can apply to anyone with similar things. My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals. Which could be months.
So this is the picture I posted to #GetYourBellyOut:
Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.
I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.
I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…
I watch a lot of standup. I watch good standup, bad standup, everything in between. I just watch standup whether I like it or not.
And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.
Because it’s less likely to seriously offend me.
Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy. So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.
Which includes me.
And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself. I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.
The issue is that most r-word jokes are hate.
They’re not meant in good fun.
They say “You’re not a human being.”
It doesn’t matter if you cloak that message in humor, it’s never okay.
The primary targets of the r-word are people with intellectual disabilities. But it has a broader range than that — it’s aimed in general at a group of people who are harder to define. Anyone who can be easily mistaken for someone with an intellectual disability, certainly. And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings. That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct. But we’re all lumped together under the r-word in the imaginations of the people who use it. It’s not a diagnosis, it’s a slur.
And I don’t use the word slur lightly.
To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.
It can’t just be an insult that’s often thrown at a particular group of people. It has to be more than that.
The r-word is probably the slur I have absolutely the least tolerance for.
People have been calling me the r-word since I was a child.
My voice sometimes has ‘that tone’ in it that people associate with the r-word. A sort of ‘dullness’. People imitating my voice have always taken advantage of that. And they imitate my posture and mannerisms as well.
By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.
But you don’t need to speak ASL to use our mannerisms and tone of voice against us.
And yes — people used the r-word on me even when I was technically classified as gifted. In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.” I’m not the only person I know with developmental disabilities who was told this growing up.
I was also told I looked like a [r-word] as a way to get me to behave more normally. It didn’t work. I never had any idea what they were talking about. (I also got called “blind” and “psychotic” in similar circumstances. There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)
At any rate, r-word jokes aren’t funny. At least, not the ones I’m talking about.
And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.
R-word jokes are an expression of hate, not an expression of humor. It’s not just the word, it’s the way it’s used. It’s the acceptance that those of us targeted are not human beings. It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes. And that most people don’t even register it as hate. Even though it’s some of the most horrible and dangerous hate I’ve ever seen.
Sacha Baron-Cohen says, “I am exposing. I am airing prejudice.” The only problem is that the people [who] are laughing, are not laughing at the prejudice. They’re applauding the prejudice! When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny. But even if it was funny, they’re applauding it.
Abraham Foxman, “The Last Laugh”
I agree with a lot of the people on “The Last Laugh”. It’s a documentary about where the line is between acceptable and unacceptable topics for humor. I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them. And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying.
And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense. Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest. And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.
Give me a good dick joke any day. Seriously. Sex can be funny. Hate isn’t. At least, expressing hate is not funny. Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.
Howard Center has several divisions. There is Mental Health, which it is best known for. There is also Substane Abuse. There is Children and Family. And then there is Developmental Services, DS for short.
I get services through Developmental Services, through a Medicaid waiver program called the Home and Community Based Services (HCBS) program. In the state of Vermont, to get developmental disability services you must have either autism1 or an intellectual disability or both, and have limitations in certain life skills.
So proving the autism diagnosis wasn’t hard, but they wanted a current assessment of my life skills. So I was 24 years old, almost 25, when this assessment was done. It was done using the ABAS, the Adaptive Behavior Assessment System, the “Adult Form, Rated By Others,” meaning that my staff person (who had worked for me for 3 years at that point and knew my skills very well) rated how often I could do a long series of tasks listed. She asked specifically about whether it should be as I do with or without assistance, and was told to rate me as without assistance so they could get a true estimate of my abilities. My case manager from Easter Seals was there in the room the whole time. I was too nervous to even look at the test so I just sat there doing nothing. The test basically asks how often a person successfully does a series of specific tasks, from always/often to rarely/never.
An important thing to understand about this test is that it is supposed to test your abiliities as they are applied to the real world. That’s why it asks how often you actually do these things. Because it’s not about whether you have a theoretical understanding of something, it’s about whether you can actually do it. At least, that’s how the test is meant to be applied. Obviously it’s subject to the interpretation of whoever’s filling out the forms.
So these are the scores I got in the different areas.
First are the scores in each specific skill area. These are out of a scale that runs from 1 to 19, with 10 being average, and 1 being the least capable in this area and 19 being the most capable.
Community use: 2
Home living: 2
Health & Safety: 2
Functional Academics: 3
They then divide that into three areas:
Conceptual has a possible score between 3 and 26, Social has a possible score between 2 and 51, and Practical has a possible score of between 4 and 64.
Then you’re given a Composite Score that sums everything up.
Composite Score: 47
The composite score is from a range of 40 to 120. My score is in the lowest percentile range for this test which is given only as <0.1. The numbers are meant to mirror the numbers on IQ tests, so 100 is average.
It’s also important to know that at the point in time this test took place, I was much physically healthier relative to now. The majority of the stuff I couldn’t do, that this test measured, was due to cognitive disabilities related to developmental disabilities. I did not suddenly and recently become unable to do these things because of physical illness or disability. I have been unable to do these things for quite a long time.
As far as how I see the accuracy of the test, I think it was pretty accurate. There’s only one area that I find misleading, and that’s the communication area. I got the lowest score possible for communication. This didn’t make sense to me, or to the tester given that she had a coherent conversation with me. But I asked my staff person what happened, and she told me that the test just happened to ask questions about the parts of communication that, especially at the time, I was the worst at: Small social nicety words.
So things like please, and thank you, and hello, and things like that. And while I’ve gotten better with those, at the time I really did never say those things to anyone. So she had to mark it down as rarely/never. So even though I was a writer, I got the lowest communication score it was possible to get. But I can’t say it was totally inaccurate, because for what it measured I really didn’t say those things. But it gives a very misleading idea about my communication skills, that the test didn’t even bother to clarify how well a person did things other than really basic words.2
The rest of the test just seems pretty accurate to me: Left to my own devices, I can do very little for myself.
The important thing here is that this was documented back in 2005 by Howard Center. As part of the intake process. So acting like I am suddenly capable of doing these things, or acting like my difficulty doing them is new and entirely due to physical disability, goes against stuff they have in their own files about me. I mean, in order to get into HCBS services in Vermont I had to prove both that I had a developmental disability of the sort they serve in Vermont, and also that it limited me in a certain number of life areas. And this was the limitation part. And it definitely showed that I was very limited in every single one of the life areas tested.
And there are specific reasons for that, but that’s a topic for another post. I just want to document the fact that my inability to do this crap is well-documented and was known to be related to cognitive developmental disabilities thirteen years ago, so none of this should be a surprise to anyone. Nor should the fact that skills training was tried extensively in California and didn’t take. And all the other things they used to know and have conveniently forgotten.
Also I hate assessments. They make me feel like a collection of deficits. It’s a very icky and medicalized feeling. Like having the important parts of you disappear like they never existed. No depth. But I’m glad I have documentation of this nonetheless.
1 By which they mean any label connected wth autism, so Asperger’s and PDDNOS count, unlike in some states. Which is not as much of a moot point as you’d think, because people still have old diagnoses from before the DSM-5, and also large parts of the world don’t use the DSM and have not merged all the diagnoses into one.
2 There’s a larger problem at work here that I don’t want to get too distracted by, but is huge: There’s an assumption out there that skills run in a line from basic to advanced, and that you have to have the basics before you can do the advanced stuff, and that everyone progreses by first learning the basics, then intermediate level, then advanced. And that everyone progresses along the same line, with the same set of skills, and so forth.
Which makes absolutely no room in the world for the fact that there are many people who learn skills in a totally different order. Or who can do something advanced but not the basics, like my friend who is severely dyscalculic and spent her childhood in remedial math because she couldn’t do arithmetic. Then a teacher found out she was obsessed with division by zero (which her teachers thought meant that she really didn’t grasp math) and told her to take that and run with it, and she reinvented the foundations of calculus. And got out of remedial math for good.
There’s lots of people who learn things in a different order. And there are actual disabilitis that cause a person to do something that seems advanced without being able to do the basics at all. This often confuses people. For instance, there are people with autism-related language disabilities that cause them to use very long words but have trouble with “simple” language. And the very long words convince people that they have no language problems.
So it’s actually totally in keeping with that kind of thing that I failed a communication test that tested “easy” stuff, at the same time I was writing long eloquent articles on the Internet. I really couldn’t do those “easy” words in conversation. So I feel like the test was accurate to the specific things it tested, but misleading as a test of overall communication because communication is a lot more than those supposedly “easy” parts.
Nor does it make it okay to hurt someone because they enjoy what they’re getting to do while you’re hurting them. (Note: Throughout this post, remember that anything that happens to me is happening to other people, and that’s one of the reasons I write about these things. And as usual I’m not asking for anything that any other client doesn’t deserve as well.)
I had a recent and very surreal meeting with some people from Howard Center.
One of the many surreal moments came when Laura1 tried to bring up the issue of medical neglect within the recreational services I was getting. I was part of a community garden. I needed help maintaining my plot. I could do some things but not others. Anyway, they basicaally made me do things a person with severe osteoporosis and autonomic dysfunction should never be made to do, with regards to bending, lifting, and heat exhaustion.
The woman from Howard’s response was a bewildered “But I thought Mel liked gardening.”
Yeah. I like gardening. I don’t like bending clear to the ground with a stress fracture in my vertebra and recently healed rib fractures all over the place. Nor do I like not being able to take breaks to avoid heat exhaustion without all assistance with the garden stopping for the day.
And yeah I actually did enjoy getting on the ground and getting my hands in the ground and all that. Even when it was bad for me.
It doesn’t mean that what they did to my body was okay.
That is a picture of me doing something I loved doing and was proud of.
That is also a picture of me being forced to do something in a way that was physically dangerous to me.
These things are not contradictory.
In fact, it’s very common in human services for them to go hand in hand like this.
The fact that I enjoyed gardening doesn’t make it okay for them to insist that I garden in a way that’s unsafe2 for me or get no chance to garden at all.
Actually, the fact that I enjoy it makes it worse that they did this.
Because they can use what you enjoy in order to get you to do things the way they want you to do them. Even at the risk of great harm to yourself. Because you’re way more likely to agree to do something like this if you enjoy the activity in question.
So. No. My enjoying it doesn’t make what happened okay. It makes it worse, if anything. You shouldn’t have to risk broken bones and heat exhaustion to get any chance at all do things you like doing. But that was the choice I was given. And it’s not okay. It’s far from okay.
Someone who helps me advocate for myself and is much more effective at it than I am
My ‘second mother’ (and eventually will legally adopt me), has served in a semi-parental role since I was 17. (Doesn’t replace my parents, but has helped them out a lot.)
So she’s there at a lot of important meetings. One of the most important things she does for me is cognitive interpreting: She helps me understand what other people are talking about, and helps them understand me even at times when I’m unable to get language across. This is a form of interpreting that most people don’t even know exists. Sometimes also called English-to-English interpreting when it happens in English.
The fun part is when she says what I’m thinking, I verify that she’s indeed said what I’m thinking, and she’s told that she couldn’t possibly know what I was thinking because the other person couldn’t tell what I was thinking. If the other person could tell that well what I was thinking, I probably wouldn’t need a cognitive interpreter so badly.
2 Because people seem to use ‘unsafe’ to mean anything from dangerous to uncomfortable these days, let me clarify that I mean dangerous. Heat exhaustion is dangerous, especially when you have autonomic dysfunction. Broken bones are dangerous. Broken bones when you have adrenal insufficiency are especially dangerous. This wasn’t subtle.
When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.
When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.
When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.
When you’re a slob, people think you’re gross but they don’t think you’re incompetent. They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.
When you’re a slob, people think you make bad choices but they don’t think you’re pathological.
When you’re a slob, people find you sort of relatable as a human being still.
When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.
There are other consequences to being a slob, mind you. But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard. And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.
And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.
But seriously. When you’re a slob, you get to be a human being. Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.
Because I don’t actually want to live in unsanitary living conditions. I don’t want to laugh it all off over and over again. I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function. These are not situations I have ever wanted.
But I’ve endured them. Over and over again. Allowing people to believe what they will.
For so many reasons.
So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.
So people wouldn’t declare me too incompetent to live on my own.
So many reasons.
And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.
Because that’s the fucking flipside, the catch-22 of being a slob.
Is they can just call you a slob when they want to deny you help you need. Help that may be at the level of survival, like it was for my friend with her infected leg ulcers. Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing. That’s not how it happens, people.
But all these things have a catch-22 angle to them.
Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.
Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.
Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.
Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.
There are no right ways to be developmentally disabled around here.
And I’m hearing horror stories. About people suddenly being pushed to do things on their own they’ve never done before. And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.
There are no right ways to be developmentally disabled around here.
We aren’t supposed to exist anymore. We’ve become too inconvenient. We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient. So they’re Xing us, one by one. Or trying. We need to resist Xing with everyting we’ve got.
Not all of my thoughts on death and mortality are purely personal. Although this is certainly born out by personal experience, this is much more in the ethical/political realm than my personal relationships with Death itself. And is just as important to the whole picture of how I approach death and mortality, and one reason I’ve been so reluctant to post my actual experiences of Death being a benevolent and friendly force.
If you are disabled. If you are cognitively disabled. If you are developmentally disabled. There are people who literally do not care one way or the other if you live or die. And there are people who actually kind of wish you’d die — some more fervently than others. And there are people in positions of power who will either fail to act in ways they would normally act, or actively push things a little more in the direction of your death (sometimes obviously, sometimes more passively with plausible deniability). And to be unaware of this is to be unaware of serious danger.
These people can work in the medical profession. Many do.
These people can work in agencies that are supposed to give you support. Many do.
These people can work in any major position of power over you. Many do.
And I’m not talking about serial killers, although they take full advantage of some of these situations in all kinds of ways. I’m talking about people who mostly think of themselves as kind of normal.
But they can still kill you with apathy, indifference, and even varying degrees of malice.
My developmental disability agency just announced to me last night things that confirmed the warnings I had been receiving from friends that this kind of thing was at work right now. They want me suddenly doing things I have never been able to do even at my physically healthiest (and they have ample documentation of my inability to do these things), things they have been doing for me for thirteen years without incident until my DPA filed a medical neglect complaint against them.
This is part of an attempt to railroad me into a service model (which requires moving out of my own home and would not get me any better care) that they prefer for me.
This is part of retaliation for filing the complaint, before which there was no talk of railroading me into this service model.
But they know. Perfectly well. That I was struggling to stay alive and stay out of the hospital with the amount of services I was getting. (I have had recent unexpected cascade-effect complications from a surgery and have been going alkalotic at the drop of a hat. Long story. But it’s taken everything I have and every skill I have to stay out of the hospital and alive as long as I have, and I’ve been back in the hospital since Friday.) And they knew that the reduction in services caused by a staff vacation/staff shortage contributed to my ending back up in the hospital. They knew all this.
Then they sent me a letter saying I am no longer entitled to have anything done for me, that I must physically participate in everything.
They know, in detail, that this is not possible for me. They know, in detail, that this would be dangerous for me on multiple levels even without a severe, acute health crisis. They have documentation of every single reason in more detail than they probably care to know, that even moving my body through the motions is physically dangerous to me.
They know these things.
So the only conclusion I can reach when they insist that these things happen anyway, is that whether I live or die doesn’t matter to them.
The fun part is if I do die, I’m sick enough they’ll probably get away with it even if they’re very culpable in the events leading to it.
But my friends have been telling me I might not live out the year the way this agency has been treating me, when I probably would otherwise.
When I say I accept death, it does not mean I accept THIS. This isn’t death that just happens. This is some toxic combination of apathy and malice, and the worst part is I don’t know precisely where it’s coming from. But people have warned me about it just before this happened. And when I spoke to medical professionals about it, they told me this kind of thing is very real and something to always keep in mind.
So this is happening. Now. I am in the hospital. And I got a letter that started out with a basic “Sorry you’re in the hospital” thing and then a “But we’re gonna try to make you do shit that’d probably kill you or land you back in the hospital to try” thing. Which makes the “Sorry you’re in the hospital” part feel completely phony.
I was starting to feel a little better and look forward to going home sometime soon, maybe not as soon as I’d like, but soon. But I can’t go home to being expected to physically do crap I couldn’t safely do on my best day.
And I can’t stress how much someone at some level is perfectly aware what this meansthat they are asking this of me just now.
And that they don’t care the risks to me (even if they think it’ll just push me into accepting their bullshit program) tells me they really don’t care deep down if I live or die. Because people who care if you live or die don’t dangle you over a cliff (or even pretend to do so) to get you to do what they want, even if they think they have a good hold on you. Ever.
And the fun thing is even if you see this, and even if those around you see this, and you see the patterns enough to know what’s happening, you can’t necessarily tell who precisely they are. They may be someone you never meet directly. But people who explicitly range from apathetic to malicious abour your continued existence are out there. And unfortunately in our culture of familial and caregiver benevolence, nobody who hasn’t seen it for themselves wants to believe it, even though it’s something well beyond commonplace.
So you can’t always just point to an Umbridge. Even if there’s an Umbridge, or a small army of Umbridges. (Umbridge got into this post because someone referred to this, after reading the letters, as “Dolores Umbridge-level fuckery”.)
And for the record, accepting death as a whole does not mean I accept this kind of death for an instant. If I die because I’m expected to do crap I’ve never been able to do and is now physically dangerous for me to even be walked through the motions of, that’s not just dying because I’d die anyway. And there’s a huge difference. And I hope I don’t have to explain that difference to anyone. I’ve long said that dying because I’d die anyway is fine with me, but dying out of someone’s apathy or stupidity or malice will leave me the world’s most pissed-off ghost. If I had any intention of being a ghost, which I don’t (not sure it’s possible but very sure that trying would be destructive). But you get the idea.
I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.
Procedural memory, or implicit memory, is how you just know how to do things. Especially physically — the classic example is riding a bicycle — but other ways as well. Procedural memory is not only rarely a problem for me, but often a strength. It’s why I’m such a good touch-typist, among other things.
Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something. You remember facts, and events, and words and concepts associated with them, and those sorts of things. That’s declarative memory.
Sometimes I gloss over the intricacies involved here and just say I have memory problems. But that’s not entirely the case, even though it basically functions as memory problems And it’s not a consistent thing even when it does exist. And it’s not like I just, across the board, have trouble with memory. Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.
As mentioned, my procedural memory has been excellent for as long as I know. So much so that I almost overuse it to compensate for fluctuations in declarative memory. So much so that I use it as a gateway to declarative memory in certain ways.
This is important: This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual. Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen. Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have. They never look at it as another variation on what humans can do. I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.
Anyway, back to memory.
So, my memory issues are probably in several areas, but the biggest one is simply a voluntaryretrieval issue. In other words, it’s more about my general inertia than about actual problems with memory.
Inertia, for me, is all about volition. Which is the ability to do things, directly, on purpose. It’s not about the want to do things. It’s not about the ability to do the things if the ability is triggered properly. It’s about getting from want to do. Most people have very little idea that there can even be a gap there. For some people, that gap is so wide that we get various medical labels: catatonia, Parkinson’s, apraxia.For some people, the gap is wide enough to cause trouble but it goes unrecognized,
Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action. It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.
There’s a handy chart that I always pull out at these times. It was developed by Martha Leary and Anne Donnellan. They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:
Anyway, you’ll notice memories at the end of that list. Like thoughts, perceptions, and emotions, those are not what people normally think of as actions. But they are actions. My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways. And memory is far from unaffected.
So I have what seems to be an inconsistency to my memory: I can’t recall things on purpose, and at any given time I can’t recall most things. When people see this, and they see it often, they say I have a terrible memory and leave it at that. And I test badly on most formal tests of memory.
If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.
Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like. I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known. Generally — not always — when I have access to a memory, my memory is extremely good. Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.
Good doesn’t mean perfect. It just means good. My memory is as fallible and malleable as anyone else’s. Anyone who thinks theirs isn’t is fooling themselves. But I often remember details others don’t, and I remember things more accurately on average, when I do remember.
I cover for the lack of access to most of my memories in a variety of ways. One is by relying on procedural memory for more than most people rely on it for. This gives the impression of more competence. I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all. And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues. I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.
So there’s a problem of access to memory that has to do with inertia. And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.
But there’s more to it.
Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.
Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly. After a time (days, weeks, months), those recent events come back into memory.
When I’m delirious, I’ve lost memories . Sometimes even after I’m not delirious anymore they never come back. I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious. When I got better I got back that period, but lost a couple months in between, never returned.
But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function. But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.
And it does come back.
But the world is a very weird, scary place when most of is blank.
Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.
I have recently begun telling people about this because my friends have told me to hide less from them. But it’s frightening. I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions. And that’s dangerous. There are reasons i cover for it.
But understand that I am always covering for it. This never goes away. It’s never not been there. There are additional issues over the years what with delirium, but this happens all the time. It happened to me pretty extremely this week because of an overly long, tense medical appointment.
And I’ve given you the simplistic version. There’s a lot more to it than this. Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that. And I need to be more open about how my mind actually works. There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear. I’m tired of covering for thm.
I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was. It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.
I had a GJ-tube at the time. This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines. This means that part of it winds through the inside of your stomach into your intestines. But the stoma (hole) itself is just a single gastrostomy hole.
Anyway, I had two separate and unrelated problems.
One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.
Two, a giant nasty abscess had appeared on my stoma practically overnight. Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere. To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.
I was seeing a surgeon to see what, if anything, he could do about the abscess. Which, at this point, had been there for two months. (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)
His immediate response:
“I can’t do anything. Even if I could get rid of it, you’d just get another.”
This seemed like an odd statement to me. I’d had my tube for years and never had more than minor skin complications. I got compliments all the time on how well I took care of my stoma. This was the only time something like this had happened. And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.
But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.
“I don’t see the point in that. Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”
That’s when I realized a pattern.
And the pattern wasn’t that he actually would have said this under ordinary circumstances.
The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it. Then he wrote off any problems as inevitable and likely to recur.
Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.” Yes, he probably will get another anyway. You still treat ear infections.
I’ve never gotten another abscess so far. It’s been years.
I’ve never gotten another ulcer so far. It’s been years.
But even if I did, those aren’t things you leave alone if you want to live.
And that’s the thing.
If you have a feeding tube, some people see you as half-dead already.
If you have a developmental disability, some people see you as half-dead already.
I knew a guy with a developmental disability who had to go to the emergency room for a bad infection. His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state. That makes him an unperson to most medical professionals. They told his staff, “He won’t live out the night,” without even examining him. Then they tried to walk out without ordering treatment. She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly. This was at least 15 years ago and last I heard he’s still alive.
I’ve gotten it more times than I can count.
A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time. This meant to the doctors that she was likely to die soon anyway so what was the point? She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times. That is not something she should’ve had to say. Her medical decisions matter no matter what the average lifespan is. She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).
This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate. Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway. Where the treatment is more damaging than the condition. I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example). But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.
And in the wrong situation it can kill you. Or lead to lots of work and unpleasantness and illness that could be totally avoided.
Feeding tubes are definitely one area where this happens a lot. Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway. That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all. That any complications shouldn’t be fixed. Either because they’ll come back right away or because they can’t be fixed at all. And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?
These are all potentially fatal assumptions. Fatal fatalism, I guess. If you have any kind of unusual medical equipment or conditions. Or if you are in any way not valued by the medical profession. Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk. Always think of the ear infection analogy. If you weren’t better off dead to them, would they treat this? Do they repeat this advice no matter what your actual problem is? This is not valid medical advice, this is prejudice dressed up as medical advice. And it’s an excuse not to treat you. And it could kill you. So be careful.
So there’s this common trick with developmental disability agencies, among many other types of agencies. It’s deliberate, it’s passive-aggressive, and it’s obnoxious.
You start asking them to follow laws, regulations, or agency rules that would require they provide either more or better quality services.
They respond by discovering rules they’d never bothered following before, that allow them to provide less or lower quality services. And then insisting that they absolutely must follow these rules.
I came to Vermont with an IPP. They call them different things in different states. In California it’s IPP (Individualized Program Plan), in Vermont it’s an ISA (Individualized Support Agreement). It describes you and the type of services you need and why, at least in theory. Usually it has goals and ways of reaching those goals.
I had the luck of having a very well-written IPP. My first case manager in California had written an IPP on which I was unrecognizable to anyone who knew me, and she had literally made things up and deliberately left things off. I had signed something saying I had been at the meeting, and she claimed that my signature meant I agreed to everything on the IPP. When I objected, she claimed she wouldn’t be my case manager anymore and I was on my own. (There is a way to be self-managed in California, but it turned out she was lying to me for over a year and someone was listed as my case manager, either her or someone else I never met.) She told me if I didn’t like it, write it myself. I was completely incapable of writing my own IPP. I couldn’t even tell anyone what needed to be on it without being asked the precise right questions and having a great deal of difficulty answering them.
So I ended up contacting a disability rights activist from out of state who had worked in the DD system and written many IPP-like documents in his time. He painstakingly asked me questions over AOL Instant Messenger for weeks and put together an accurate IPP, which then got put in my file as my official IPP, and I didn’t have IPP trouble from there on out. It got modified over the years with time by different case managers but the basics stayed the same. I’m very grateful to that person.
So when I moved to Vermont, my first case manager was as incompetent as my first case manager in California. And part of my IPP involved a section on how to communicate with me in ways that were cognitively accessible to me. I have problems with understanding language, and understanding certain concepts. I often need things explained to me or rephrased. At minimum. He was asking me to do important things, that I couldn’t understand because he used jargon I was unfamiliar with. When I asked him to explain, he either wouldn’t explain or would send over the same stack of papers I couldn’t read. This kept happening, and the more it happened the more he’d insist I agree to do something I didn’t understand what I was agreeing to. And I wouldn’t agree without understanding, and he started failing to communicate with me at all except to demand I agree to this thing.
There were other, worse things going on too, but I want to focus on the IPP.
So my IPP contained an entire section on how to effectively communicate with me. I and my DPA both told him a zillion times to comply with this section of the IPP. They wouldn’t. (We were also asking that they stop sending two staff people who were incompetent to the point of dangerous med errors. And one was crossing lines in terms of religious proselytizing and forcing me to use my own resources to promote his religion.. They kept sending them to my apartment no matter what I said, and if I turned them away I was being charted as “refusing all services” even though there were dozens of staff available to choose from who were able, willing, and even eager to work with me. I was told nobody liked me and I had to take what I could get. So there were other issues happening that we were fighting them over.)
But one day I got a letter in the mail saying that because of what they’d read in the IPP, they were recommending that I go to residential care for my safety and the safety of staff. The only way I could avoid residential care is if I provided detailed documentation from my California psychiatrist and the Regional Center system of my behavior plan. I didn’t have a behavior plan in California, so there were no documents to produce. It turns out they’d found reference in my IPP to past aggressive behavior, and suddenly following my IPP became all-important if it meant shunting me into residential care to get rid of me.
Following the part of my IPP about communication accessibility, of course, never became a priority.
That’s an example of finding the rules they want to follow and then following them to the letter. And doing so entirely as retaliation for asking them to follow some other rule they have no intention of following. And then they can say, “Well you asked us to follow the rules, that’s what we’re doing!” It’s usually in retaliation for making demands. And since it’s within the letter of the law if not the spirit, it can be used to withhold services (including as retaliation) without appearing to break any rules.
So if they start discovering new rules, that’s one thing they might be doing. It’s extremely manipulative on their part. (Agencies always manipulate clients far more than clients manipulate agencies, but are quick to call us manipulative for things that aren’t.)
Sometimes they’ll even make up rules that never existed and pretend they’ve been rules all along. Or create new rules and try to pretend they existed.
At one point I was told that in the 13 years I’d been receiving services from an agency, from a wide variety of staff and case managers, with a wide variety of attitudes towards services, something they’d been doing had been against the rules the entire time. They said nobody had told me until now. I don’t buy it. They just wanted to stop providing a certain kind of assistance, and to claim that to get that assistance I’d have to leave my home. They’ve had no problem over that 13 years telling me when there was a kind of assistance that was against their rules or that they wouldn’t provide, so I don’t buy that it was just nobody felt like they could tell me it was against the rules.
(It involves doing things for me without any pretense of Independence Theater involved. Which, under federal law, they have to do if I can’t do something, or can’t do it consistently or safely. They have never until now given me a shred of trouble over this issue except in the area of community access hours — at which point they had no problem telling me there was an issue — so I don’t buy anything they’re telling me about this.)
This is, again, retaliatory, and in this case pretty vicious retaliation. And manipulative in more than one way. They are attempting to convince me that their “service model” doesn’t support doing what they’ve been doing for the past 13 years, and that therefore I must leave my own home in order to receive the services I need. They are attempting to do this by threatening to (or really going through with) do less and less for me, thereby putting my health and life in danger, and hoping that’ll herd me through the door into their other program. This is both against federal disability law and massively unethical, but they don’t care about either of these things. They get away with it, and they can claim to be following the rules, so they do it. It’s simply an attempt to maneuver me where they want me, and punish me for complaining. If I hadn’t told them to follow the rules, they’d never have discovered this and other rules to punish and maneuver me around with. And they still — of course — magically haven’t discovered any of the rules we’ve been telling them to follow. The actual rules that we know exist.
It should be noted that when I ask agencies to follow rules, it’s generally my safety at stake. When agencies ask me to follow new or arbitrary rules, it’s generally not their safety at stake, and it generally puts my safety more at risk. They have massive power over my life, I have very little over theirs, and this is one way of them misusing their power. The situation is not equal in any way. (More on false equality in another post, hopefully.)
So that’s the basic sequence of events:
You ask them to follow a rule they are not following, that would help you if you followed it.
They retaliate by finding a different rule (or making one up), one that hurts or inconveniences you, and following it to the letter. This is punishment for asking them to follow rules.
They will almost always fail to follow the rule you told them about. If they do follow it, they will try to find ways to follow it in letter but not in spirit, or follow it in as small a way as they can get away with.
They will, however, follow the obnoxious rule they found or made up, as thoroughly as humanly possible.
Exactly what it says on the tin. This is a guide for people with developmental disabilities in United States, receiving services under an HCBS (Home and Community Based Services) Medicaid waiver program. Which includes me.