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’ve probably said this before. But it’s so important I feel like it needs a standalone post.
I talk a lot about the dystopian hell that exists beneath the shiny surface of the developmental disability home and community-based service (HCBS) waiver system. Because I live in this hell. Because people living in this hell don’t get heard from enough, especially online. Because if something terrible is happening to me, it’s happening to the other people in this system as well. All kinds of good reasons.
But people misuse the horror stories coming out of the HCBS system. They use them to say that we need to bring back the old system. Traditional institutionalization. Or new shiny variants on it like those farm-based “intentional communities” — a weird word considering people don’t get a choice as to whether to live there. Those are still institutions, by the way. So are large parts of the HCBS system. Institutions are determined by who has what kind of power and control, not by the shape of the building or the number of people living there.
To be very, very clear.
The horror stories coming out of the HCBS system all come from the things HCBS has in common with traditional institutions.
So the problem is not that we have moved too far away from traditional institutions, and need to move backwards to make things better. The problem is that we have not moved far enough away from the practices of traditional institutions. The solution is to be less like a traditional institution, not to bring back traditional institutions.
Oh and about that “bringing back the institutions” thing. I know a lot of the larger institutions closed. But not all of them did. It’s not like we just have a world empty of traditional institutions, so “bringing back the institutions” is a concept that doesn’t quite make sense. We’re still fighting to close them.
But we have to replace them with something better, or people just get moved from one kind of hell to another.
And we’re supposed to be so grateful for this that we don’t complain about the things that have stayed just the same as traditional institutions. Which is a whole lot of important things.
The problem is not that we have left traditional institutions behind and need to go back to them. The problem is that we have not gone far enough away from them and we need to become even less like them.
Anyone using HCBS horror stories to promote traditional institutions is coming at the problem bass-ackwards. HCBS horror stories should cause people to want to close all the traditional institutions and make services resemble old-style institutions as little as possible. On a deep level involving power and control, not on a cosmetic level where all you’ve done is slap some new decorations on the walls of the old system.
Normally I don’t have that much of a problem with clichés, depending on context. Quite often, something’s a cliché because it really is true, so it’s been repeated so often because it’s a reasonably accurate way to talk about reality. But then there’s this other kind, which grates on my nerves…
There’s two of them, actually, but they kind of work in parallel.
There’s the standard cliché platitude they give you when you’re in the hospital and you’re pissed off about something. it runs something like this:
“It’s so hard to come in here and have to give up so much control you normally have over your life, isn’t it?”
Well yes, and no.
Yes, the hospital takes control away from you in ways that are completely unnecessary. Like, things where there’s no actual reason for you to give up control. And where giving up control can be not just annoying, but dangerous. But that’s far from the only reason a patient in the hospital might be pissed off at the hospital. And they try to make it sound like it’s all a personal problem, with a personal solution. And that solution is to give up control over your life gracefully, even when it makes no sense to do so.
I encountered one today that I hear less often, but that seems to stem from the same basic source, and have the same basic problems to it.
I have a staff person who’s leaving. She’s worked for me for longer than five years and knows more about my care than either me or my case managers. She does work that technicallly the case managers should be doing. They sometimes call her a third case manager. But in reality they seem to have very little idea the sheer amount of work she does, and knowledge she has.
Anyway, I am very concerned about the way management seems to be handling her leaving. Normally when a regular leaves, especially someone known to be knowledgeable about a lot of things, their last month at the least, is filled with training and searching for replacements. That does not appear to be happening. She is not getting the kind of leaving that a regular staff without her degree of knowledge gets, let alone one with the knowledge she has.
I confided my nervousness in someone.
They said, “Change is always hard.”
That is not what is going on here.
I am more prepared than most people for the turnover rate in this field. I have felt lucky the last several years to have staff who lasted for months or years. Dave Hingsburger describes the turnover in the DD field as “Thursday” and he’s right.
I have learned to balance everyday emotional connection with professional distance, so that I don’t feel hurt on a personal level by staff changes. There’s people I’ll miss more than others, because I’m human and so are they. And I will miss Hallie a good deal. Just as I miss Zack and Rick. There’s some people you do form a connection with. But it’s a paid relationship, not a friendship, and you forget that at everyone’s peril. Pretending it’s a friendship hurts everyone.
But at any rate.
The problem isn’t a personal connection I’ve formed with Hallie.
And the problem isn’t that change is hard.
The problem is that every time Hallie even goes on vacation, I end up with some kind of health crisis. And management at Howard Center doesn’t prepare either me or other staff for the sheer amount and kind of work required to make up for what Hallie normally does.
Just as an example, last time she was on vacation, there was a doctor’s appointment. And there was something urgent that needed to happen before the appointment — some blood tests. I texted my case managers, and was basically told to handle the communication with the doctor’s office myself (something I can’t do), and otherwise to just wait until the appointment to get the blood tests (which defeats the purpose of having the results of the tests available by the time of the appointment). And the whole thing was said in a casual manner, as if I hadn’t just been hospitalized and wasn’t about to be hospitalized again for problems the blood test was testing for.
If Hallie had been there, she’d have been in contact with the doctor’s office, and would’ve immediately taken me for the blood test. Things would’ve gotten done. But she wasn’t, and they didn’t. And even the doctor’s appointment was a mess because of lack of preparation.
And that’s just one example of what can go different.
She’s leaving for good now.
The case managers have not spoken a word to me about her leaving.
They apparently plan to put me on the “floater model” so that I won’t have a regular staff person at all. Which for someone with my degree of medical issues, is a disaster. I need someone with a stable level of knowledge about how my body works, not someone who changes every month.
Nobody asked me.
They never do.
I wouldn’t have even known if Hallie hadn’t told me. Either about her leaving or about the floater thing.
They’re not training replacements. There won’t be a replacement. I was not asked or even consulted about what I thuoght was a good idea.
Major things are going to change.
They want this to happen.
Everything they do lately seems to be an assertion of their power and control over my life.
It reminds me of this chart, modified from the beginning of Behaviour Self! by Dave Hingsbuger:
Behavioural language of person with a disability
English language translation of behavioural language
I want control.
Spitting out food
I want control.
Kicking the furniture
I want control.
Swearing at staff
I want control.
I want control.
Refusing to participate
I want control.
Care provider lingo
English language translation of care provider lingo
I am concerned about your behaviour.
I want control.
This programme is for your own good.
I want control.
You need to learn to be appropriate.
I want control.
Locking you into time out is helping you.
I want control.
I’m sorry but because of your behaviour you have lost your commmunity outings, family visits, favourite foods, favourite television programmes, access to your bank account, visits from your boyfriend, access to an advocate, the right to vote at house meetings, access to the telephone, all of your civil liberties and any personal dignity you have left.
I have control.
This kind of power struggle is going on right now, but nobody will acknowledge it. But they are finding every possible way they can manage, to tell me they are the ones in control of my life.
And this kind of loss of control is a huge problem. Not a platitude. Not something that it’s reasonable to adjust to. Lacking control in the ways I lack control over my life, in the ways people in the developmental service system lack control over our lives, is another one of those little crimes against humanity that gets overlooked because everyone accepts it as normal.
So no, I’m not gonna accept this gracefully.
I’m not gonna accept it at all.
And that’s not because I have a character flaw that prevents me being gracious and accepting my fate and all that. And it’s not becuse I have trouble with change.
It’s because I have enough normal human reactions left in me that it bothers me to be treated as subhuman, and to see other people treated as subhuman. (I know if they’re doing something to me, they’re doing it to others. They’re not as individualized as they make themselves sound. Most of my problems with them come down to human beings not being plug-and-play.)
And I’m getting really tired of Howard Center treating me like there’s something wrong with me for wanting the same control over my life that everyone deserves. The kind all of them have and would be furious to have even an inch of it taken away.
I’m actually becoming a lot more medically stable. I’m getting to where I can finally do a few things that aren’t directly related to medical problems. In the past, my feeling better combined with Hallie leaving would mean that they were supporting both me and Hallie in getting ready for Hallie to leave. As in, even just on a practical, logistical level, they would be helping us both prepare and vet new staff.
That’s not what’s happening.
Yet in their interactions with me these days, everything seems to translate to “I have control.”
People shouldn’t get used to being treated like this.
This is a series of graphics promoting the Disability Integration Act, an important piece of legislation in the United States right now, that is not getting anywhere near enough support. From the Disability Integration Act website:
The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.910, H.R.2472) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.
Credit for most of these goes to Cal Montgomery. His dogs Murdo and Erastus are featured too. Image descriptions are in the alt and description tags, the captions contain my personal responses to each graphic.
What I like about these is they show how simple and normal it is, what disabled people want. And they have adorable animals on them, and draw parallels with the actual lives of the animals, and people care about animals. They might see things about disabled people they wouldn’t otherwise see without the analogies being made. For real.
But seriously my favorite is the one about being able to poop whenever I want. That one really encapsulates why it’s important that I stay in my own home, and why making me move to someone else’s home is unreasonable, cruel, criminal, and a whole host of other choice words.
And yet disabled people and elderly people are expected to not only accept restrictions on our freedom, but to do so gracefully and without complaint. In fact, the more readily we accept these things, the more we are praised. And then we lose our freedom.
And usually we die faster too. Not that anyone notices. They think we die because we’re elderly or disabled. Actually, lifespans (along with various other measures of physical and mental ability) for various disabilities have had to actually be updated over the years entirely because of fewer of us living in institutions. Institutions kill people faster. All institutions, whether large state institutions or small nursing homes. They reduce our lifespan and nobody notices or cares. That’s not the only reason they’re bad, but it gives the lie to the idea that they’re really there to “protect our safety”.
There is nothing that happens that is good in an institution that can’t be done, and done better, outside of one.
There is a lot that happens in institutions that is bad and doesn’t need to happen at all.
There is nothing that happens in institutions that is special to institutions, good, and requires an institution in order for it to happen. Anything you hear different is a lie used to keep institutions open.
Institutions are our modern equivalent of Victorian workhouses.
Workhouses were institutions for poor people. Think the sort of thing Charles Dickens wrote about. They had terrible living conditions and people died in them. Many poor people would rather die than go to the workhouse, just as many disabled people would rather die, live on the streets, or go to jail than end up in an institution. People considered workhouses necessary. People considered workhouses natural. They were neither one. These days, people consider workhouses an atrocity and a thing of the past.
But we still have institutions for disabled people, and they are everywhere. Some of them are large and obvious, others are hidden in plain sight. But all contain the same thing: A power structure that puts administrators on top, direct support staff in the middle, and disabled people at the bottom. If you want to know how institutional something is, follow self-advocacy leader Roland Johnson’s advice and ask the question “Who’s in charge?”
Also, anything that requires a disabled person to move out of our own home — even if it’s “just” moving into the home of an existing staff person — and gives no option for the disabled person to get the same help in the home we already live in, shows that something is institutional in nature. Even if it’s entirely “community-based” otherwise. Real community-based services let you live wherever you want to live.
And there are institutional-style services that masquerade as community-based services and get funding through home and community-based services (HCBS) waivers. Even some that let you stay in your own home. If living in a system seems more like a dystopia than it ought to, chances are thre are at least institutional elements. It’s plenty possible to have an institution where each person lives in their own home but it’s otherwise run like any other institution.
Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.
I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.
The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.
I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.
I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.
Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.
The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”
This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster. The house protects me and makes me aware I am protected, even from my own fears.
I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.
Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality. All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.
I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.
Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.
But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.
You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.
It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.
Participating in such a thing isn’t trivial, no matter what your role. Maybe you make the policy. Maybe you enforce it. Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless. Maybe you persuade us to give up ourhomes and move somewhere else. So many things you could be doing, but it means you bear some responsibility for somethin terrible. You can’t escape that. I can’t sugar-coat it for you.
This is my home.
That’s all there is to it.
This is my home. And anyone who participates in trying to take it away from me, is doing something terrible.
Because this is my home. Living here is my right. Having the assistance required to live here is my right. Nobody gets to chaange that. And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home. They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located. This is my home, you can’t just exchange it for another and pretend they’re the same.
Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now. Lois Curtis fought for this. Elaine Wilson fought for this. They were two women with developmental and psychiatric disabilities, and don’t forget it. They are what the Olmstead decision was all about. Everyone has fought for this and I will not give it up lightly. I will fight for it for me and for everyone who comes after me. And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me. I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.
This is my home. You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary. I know better. I know my rights. THIS IS MY HOME. And this is how much I have to lose. And more. I will fight to stay here with everything I have in me, and never stop fighting no matter what happens. Because it’s not just my home at stake. As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional. THIS IS MY HOME.
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.
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.
“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai
“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai
“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai
So when a social worker told me I had to understand that my developmental disability service agency is being nice to me, I saw red. Especially when she explained to me oh-so-helpfully that many clients are getting nothing, therefore they are being nice to me by giving me anything, and I should be grateful and appreciative of this fact. There was, of course, the implied threat that everything could be taken away from me, but that’s been hanging over my head for awhile now. I fully expect them to try at some point. Possibly soon. Possibly now.
To be really, really fucking clear.
There is nothing that I am demanding for myself that I don’t think every other client of the Howard Center should have.
The fact that some people there have nothing right now is obscene.
I am not causing them to have nothing by demanding what is both my right and their right.
Hell, I’m not demanding as much as I deserve. I’m not even demanding all of my actual rights as a client of the developmental disability service system and a Medicaid waiver recipient.
Right now, I’m just demanding what i need to survive and live in my own home.
Survival is a human right. Living in my own home is a human right. As a client of the developmental disability service system, these are things that all 700-odd people under the Home and Community Based Services system in this agency are entitled to. Every single one of us is entitled to the supports we need to survive and live in our own homes. The fact that the agency doesn’t do things this way is an ongoing violation of those rights, not a thing that should ever be considered an acceptable state of affairs.
If I ask for these rights for myself, I am asking for them for every single other client of the agency as well. I am not asking for them so they can take them away from someone else, and it’s fucking insulting, not to mention dangerous, to every client involved here to even imply that. And it belittles — deliberately, in many cases — the work of the self-advocacy movement which has worked very hard to secure these rights for every single one of us. I am here because other people demanded these rights for themselves, and they became known as rights we all deserved, and then they became available to me as well. In asking for what I need, I am merely doing the exact same thing.
So don’t ever tell me that in asking for my rights i’m somehow taking away from someone else’s.
I’m able to live in my own home because Lois Curtis and Elaine Wilson demanded the right to live in their own homes.
When I demand that this right be upheld for myself, I am demanding that this right be upheld for every single other person with developmntal disabiliites and beyond.
I refuse to play their divide-and-conquer games.
I refuse to say that because other people are getting nothing, I should be happy I’m getting anything at all.
If I don’t get what I need to survive, I’m not getting enough. If other people are getting nothing, they’re not getting enough.
I might not even be involved in this fight if it weren’t for knowing how many other people this is happening to.
So don’t ever get the idea in your head that all I care about is what I get. I want to survive and live in my own home without being endangered by the very system that is entrusted with assisting me to live in my own home. These are not excessive demands. These are bare minimum demands.
They are playing a lot of head games and a lot of word games.
But I can still see what’s happening.
And I will continue fighting because I am not unique, my needs are not special, and an agency that exists to meet those needs, meeting those needs, is not a fucking favor. Every single one of us deserves to survive and live in our own home, these things are basic human rights (and even legally considered them at this point, not that this should be the measurement of whether something is or not), and failing to meet them on such a large scale is evil.
Also, less than I need to survive safely is still less than I need to survive safely. The fact that I could get even less doesn’t change the fact that I need more than this. And that until recently, I was getting more than this without increasing my hours or changing anything. (In fact, what they want me to be doing would require an increase in hours probably, so they can’t even truthfully argue this is about resources. The proposed changes in my services would, even if possible, require far more time and effort on the part of staff than what was going on already.)
And no, I am not unique, that’s part of why all this frigging matters so much. If I were the only person this was happening to, it would be a problem, but not the kind and scale of problem that is actually happening here.
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.