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.
I’m going to lead with a quote from Jim Sinclair and discuss it:
Most autistic people who are capable of formulating questions have frequently experienced the following scenario: We ask for information that we need in order to prepare ourselves for a new experience. Instead of answering our questions, NT people tell us that we don’t need to ask these questions at all. We just need to relax and stop being so anxious. The fact is that being able to ask questions, and getting clear answers to our questions, and thus knowing what to expect, are often the very things autistic people need in order to be able to relax and not be anxious. Asking a lot of questions about the details of a situation is usually not a “maladaptive behavior” that increases an autistic person’s anxiety. More often it’s an adaptive strategy that an autistic person is using to reduce anxiety or to prevent being in an anxiety-provoking situation in the first place. It’s very important for us to have thorough explanations and ample opportunities to ask questions.
So first off be aware this quote is from a specific context. It’s an extremely long article on specific experiences of autistic people’s self-created communities and cultural values. So if your first impulse is to think “But it’s not only autistic people who’d encounter this,” you’d be totally right. But you’d also be missing the fact that it’s quoted out of context from an article that is about autistic people, so it’s gonna mention autistic people explicitly. Just like an article by and about transgendered people is gonna mention transgendered people explicitly. It doesn’t mean it doesn’t apply to anyone else in the world.
Anyway, I mostly agree with Jim. My only disagreement is the role xe puts on anxiety in the first place, when I often encounter this in situations where anxiety is not even a factor. When it is a factor, it works exactly how xe says it works. But it’s not always a part of things in the first place, and then people just drag anxiety into it as if you must be anxious because they think you are.
Example of something that had absolutely nothing to do with anxiety:
I go into the emergency room around 8:30 pm one night to be seen for cellulitis. I’ve been told (I later find it’s untrue) that I’m not allowed to bring meds from home to the ER. I know that I’m likely to still be there at 11 pm, when I am due a dose of hydrocortisone that is extremely time-sensitive: I can’t survive without hydrocortisone and my body makes absolutely no cortisol. I know that this hospital doesn’t have liquid hydrocortisone that can go through a J-tube,and that the pharmacy has to make a suspension by hand, and that this takes time. So I know they’re gonna need advance notice if I’m going to get this medication on time.
So after describing the infection, I mention to the triage nurse that this is gonna be a serious issue if the med gets missed or delayed, so they probably want to prepare for the situation in advance. I ask if this is something they can do and be aware of so I’ll actually get the meds. I’m doing this in front of an on-call staff person who doesn’t really know me that well.
The on-call staff person immediately starts all the crap they’re taught about calming me down, redirecting me, making sure I don’t have any anxiety, and telling me not to think about the hydrocortisone. I get pissed off and tell him it’s important. He tries to “de-escalate” me. It goes round and round and round.
The time gets nearer, and I am now back in an ER room, it’s approaching 11. So I’m without information about whether they’re working on this, and want to make sure it’s actually happening. So when the doctors and nurses are back there I’m talking to them about it.
And the staff person is saying it’s not eleven yet so I need to stop ‘worrying’ (preparing people in advance for something that needs to be on time and takes time to do, especially in a busy emergency room when I’m not there for adrenal insufficiency) until it’s actually eleven at which point we can address this.
And any time I seem annoyed with him, or concerned, or even try to discuss the matter, he says it’s anxiety and I just need to calm down and not think about it and everything will work out fine.
Everything did work out fine, but only because I did prepare them in advance, so they had time to write the orders and get the suspension manufactured in their pharmacy and delivered to them by eleven.
I also learned you are allowed to bring meds into the ER, that night.
But anyway, that’s a good example of where there was no anxiety at all involved. I was not trying to alleviate anxiety by giving information and asking questions, I was trying to get something practical done that required advance planning.
I might have ended up anxious if there were signs they weren’t listening to me. But in that case calming down wouldn’t have been relevant, what would’ve been relevant would be finding effective ways to advocate for what I needed. Which generally requires talking about something, not pretending it’s all gonna be okay.
Doing what the staff person said in that situation wouldn’t have just been anxiety-provoking, it would’ve been physically dangerous to me.
Often the information I am asking for, when I ask questions, is a similar situation: I need the information in order to make an informed decision about something important. Other people may not know why I need that particular information, but I need that information. Without the information, I can’t make the decisions I need to make. And the decisions may be, and often are, important medical decisions.
And I’m often deliberately left in the dark. People give me as little information as possible. And when I ask for information, it’s treated as an emotional issue: Frustration, anxiety, pushiness, stubbornness, whatever. When if you just give me the information, I generally know what to do. And people are always trying to fix my emotions (as if they need fixing) instead of just giving me the information I need.
Quite often, anxiety won’t even arise until you withhold information from me. And then anxiety is just the by-product of a situation that will go away once I have the information. But even so, I’m not usually asking questions to make anxiety go away — even if it does make anxiety go away to get the answers. I’m asking questions to get information that I need for a practical purpose. Anxiety, if it happens, or goes away, is just a by-product of the situation, not the focus of the situation.
There is no faster way to cause me some combination of anxiety, anger, rage, fury, and frustration, though, than to try to fix my emotions rather than try to give me information. This goes double if you try to fix them by manipulation that you think is subtle. It’s not. I know what redirection is. I know what it means when you accuse me of ‘escalating’ — as if you have no part in making the situation worse. I know what all of your jargon is and what you have been taught to do about ‘situations’ like this one.
And the best possible thing you can do is give me all the information I need, including information I don’t have access to, or assist me in obtaining the information I need, as quickly and thoroughly as possible. Be on my side, don’t sit there trying to calm me down. And certainly don’t tell me to take a deep breath and calm down, focus on something else, watch television with you, or some other random crap.
And by the way, the respectful way to approach a discussion about whether I have anxiety I want calming down from, is to ask. And ask in a way that makes clear you will accept any answer, not in a way that makes it clear that you expect me to say “Yes, I am making myself anxious by thinking about this and need to take my mind off it” or something.
And then if I do say yes, then you can ask me if I want help finding strategies to do so. And then you can ask me about whether any particular strategy works. You don’t just apply strategies at me or shove them down my throat.
It’s really not that hard to be respectful.
But it’s very easy not to be respectful.
It’s not respectful to jump in and assume that I’m making myself anxious and want you to help me calm down. Or that I’m making myself anxious and need you to help me calm down whether I want you to or not.
It’s not respectful to jump in and start manipulating me into calming down. By manipulating, I mean all the things you have been taught about how to calm people down without telling them that’s your actual intent. Like distraction, redirection, and other things that rely on the person not knowing what you’re trying to do. Anything where you’re not being open and explicit about your intent to calm the person down, and anything that uses covert force, is manipulation.
Staff manipulate clients more than clients manipulate staff, but clients get called manipulative for doing ordinary people things that have no manipulative intent whatsoever. So it might surprise you to hear these things described as manipulative. But they’re manipulative. (Clients do manipulate staff sometimes, but we generally do it because we have to in ways you may sometimes have trouble understanding. Staff are taught to habitually manipulate clients, it’s very hard to be staff and not manipulate clients.)
Just about every strategy for changing someone’s behavior and feelings without them knowing is maniplative by nature. That’s what manipulation is. Many strategies for changing people’s behavior with them knowing is manipulative. All behavior modification is by defintion manipulative whether it’s obvious behavior mod or subtle behavior mod.
Manipulative is not always bad but it is always an exercise of power. Staff manipulating clients is especially dangerous at the best of times, because of the direction the power flows. It should not be something you just pull out of your pocket every time you think someone needs to calm down.
It also helps not to be afraid of other people having and showing emotions other than happy shiny ones. Sometimes people get stressed out, pissed off, freaked out, upset, and all-around discombobulated. Sometimes people show it. It doesn’t always need to be fixed and tidied away to accommodate your discomfort. And often it’s a sign something is going wrong — like not having enough information, or not being listened to, or not getting the chance to give the right information to the right people — not a random thing a person is just feeling for no reason that needs to be brought under control before you even understand it. These are perfectly natural reactions, you don’t have to manage them for us at the first sign we’re less than 100% chill.
Attempts to manipulate me into calming down will nearly always backfire because I can spot the manipulation a mile away and will get pissed off. If you don’t want that result, don’t manipulate me. Treat me with respect instead. It’ll get you far.
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.
So years ago I took a sexuality and relationships class from my developmental disability agency. The class wasn’t actually half bad and I learned a lot. One of the two instructors, though…
So there’s a bunch of us in the lobby of the building waiting around for class to start.
And they decide to do some kind of introduction to the class down there in the lobby before we go up to the room the class is in.
And there’s two instructors, a woman and a man. I know the man, he’s okay. But the lady is one of those people who’s secretly terrified of people with developmental disabilities and masks it with twenty layers of condescension. And they always think we don’t notice. We always notice.
So she’s talking down to us, and asking us what we expect to learn in the class, and so forth.
And a guy with an intellectual disability very deliberately asks, “Are we gonna learn about cunnilingus?”
She flinches, tries to recover, goes five times as sing-song, and says, “Woowwwwwww, that’s a biiiiiiiiig woorrrrrrrrrrrrrd.”
We were… unimpressed with her, to put it mildly. And she had no idea what an ass she was making of herself.
Anyway, I wish I could think quicker on my feet, or I’d have quoted Terry Pratchett:
“Hello, little girl,” he said, which was only his first big mistake. “I’m sure you want to know all about hedgehogs, eh?”
“I did this one last year,” said Tiffany.
The man looked closer, and his grin faded. “Oh, yes,” he said. “I remember. You asked all those… little questions.”
“I would like a question answered today,” said Tiffany.
“Provided it’s not one about how you get baby hedgehogs,” said the man.
“No,” said Tiffany patiently. “It’s about zoology.”
“Zoology, eh? That’s a big word, isn’t it.”
“No, actually it isn’t,” said Tiffany. “Patronizing is a big word. Zoology is really quite small.”
-Terry Pratchett, The Wee Free Men (exchange between a girl named Tiffany and a wandering teacher trading knowledge for food)
As it is, I think we all settled for rolling our eyes and the like, which our instructor of course missed entirely. Just like she missed the point of the guy choosing a word like cunnilingus when being talked down to…
This is a medication that is vital to my survival. I don’t mean indirectly. My body does not make even a little bit of a particular hormone that is necessary to survival. Without getting a replacement, I will die. There is no way around this.
There have been many complicated things preventing me from getting the right amount of this medication, throwing my health into jeopardy. Some have to do with the agency and some don’t.
But my endocrinologist recently got angry about something the agency was doing. One of the doses of the medication has to last me overnight. It has a certain time it stays in effect. You can’t change this time by wishing really hard or something.
So there was a staff shortage, and they started sending people earlier and earlier at night. A medication that was intended to be taken at 9 pm started happening as early as 5:30 or 6 pm instead on days when it was more convenient to the agency.
I started waking up with trouble breathing, and having to take more of the medication to breathe through the night.
Needless to say he wrote an order saying the nighttime dose needs to be as late as possible.
But anyway, we recently discovered a lot of things that were going wrong with this medication. Everything from the way my stomach was absorbing it, to the way my body seemed to be using it, to other conditions being affected by it, to the timing. So we had to start over. By start over I mean go through a long grueling period of figuring out how much I needed by chest port, resolving as many digestive issues as we could, working out dose conversions to my still-wonky guts, and coming up with a dose and timing schedule that will get me through the day without too many hiccups or surprises.
In order to do so, we had to throw out my agency’s schedule entirely.
See, before this, I was only getting the medication during the existing staff shifts when the people from the agency were at my house to administer medications.
And that didn’t turn out to fit the rhythms of the way this hormone works in anyone’s body, let alone mine. Like not even a little.
But we had to go with what my body would actually need.
So now I have a medication I have to take four times a day, and every single one of those times is outside of the times when I have staff over to help me administer things.
Self-administering medication without, at least, prompting and checking from an actual human being, is not something I can do. I know this. I used to have an app designed specifically for people with brain injuries and other cognitive disabilities that wasn’t good enough to nag me into doing shit like this.
Mind you, I’ve downloaded Medisafe onto my phone. But that’s a backup. It’s not sufficient. Medisafe alone, even with the thing where it texts someone if you don’t take it, isn’t enough.
And of course when my case managers come by, they’re all cheerful to tell me about how their boss told them about Medisafe.
But anyway, they were also just as eager to tell me that they as an agency were not capable of giving me the support to self-administer this one medication.
Support would, at minimum, consist of getting a phone call four times a day.
A fucking phone call.
Not someone to give it to me.
Not someone to physically be in the room.
Just someone to call, get me to initiate the whole process of doing it, and then verify that I’d done it.
They told me this is not possible. That they can’t.
I told them that I understand they think they can’t, but that I need them to know I’m fully aware that they actually mean they refuse to. Maybe not these case managers personally. I don’t know who. But failing to provide even minimal support for a life-saving medication is a refusal, not an impossibility. And I refuse to let them get off the hook for saying it’s just impossible for them to support me on this.
They do more at other times than it would take to do this.
They just — someone, somewhere, in the agency — don’t wantto provide this kind of support.
I will come up with other options, of course. I already am. I told them that if they refuse to support me on this then they need to help me find those other options at the very minimum. But that it’s absolutely, absolutely refusal. It’s not can’t, it’s won’t.
Agencies love to come up with random reasons they can’t do something when they really mean they refuse to, or don’t want to, or just plain won’t for whatever reason.
My agency seems to love to do it by reflex. Often the very first thing I hear when I ask for help with something is that it’s impossible. Even if it’s something like “Can someone plug my cell phone in at the end of the shift?”
At any rate, it’s really wonderful to hear how person-centered this agency’s services are these days. You’d think there wouldn’t be anything more person-centered than figuring out a way for someone to get life-saving medication at the times their body needs it. But person-centered appears to just mean I get the option of having a glorified social media profile stuck into my file, not that anything I get in the way of services actually revolves around what I need or want in life. Because that’d make sense.
Make no mistake about it, though: This is not something they can’t do, this is something that at some level they are refusing to do. Because the agency is set up for the convenience of the agency, not for the convenience of those of us it claims to be there to help. Which has results for us that range from annoying to life-threatening.
I don’t think Vasili Arkhipov would’ve said he couldn’t try and veto the captain’s order to nuke the Americans…
By the way, I do have every strategy currently possible in place for dealing with this situation. I have stopgap measures. I have people on my side. I’m gonna need something more than this eventually. But I don’t need suggestions or anything, so please don’t.
When Cal Montgomery wrote one of his most famous disability rights essays in Ragged Edge Magazine in 2001, he titled it Critic of the Dawn. He included a quote from a Phil Ochs song to explain the context:
To a nightmare of knowledge, he opens up the gate
And a blinding revelation is laid upon his plate
That beneath the greatest love is a hurricane of hate
And God help the critic of the dawn
I’ve thought a lot about that quote over the years.
I don’t actually literally believe there’s hate under the greatest love in the world. I can see a deep love that underlies everything.
But that’s not the point of the quote.
The point, as I see it, is glamour. At least, glamour always comes into this sort of thing for me.
Glamour is a term from folklore for a kind of fairy magic. It tells us to perceive something different than what’s actually in front of us. A cave may look like a castle. Rotting garbage may smell and taste like a feast. Generally glamour tells you whatever you’re looking at is better than what it actually is. It can show you what you want to see, what the fairy wants you to see. Whatever’s beneath it can just be shabby-looking, or else be sinister as all fuck.
I’ve lived my whole life surrounded by glamour, drowning in glamour, learning to see through glamour for my own protection and that of those around me. Learning to react to what is really there, not to what people want me to see, want me to believe. I had to learn early the difference between the taste of love and the taste of saccharine-coated poison if I was to survive the world.
These are valuable skills to have, and to use.
It’s also dangerous.
It’s also often thankless.
But it’s important to learn to see through glamour.
It’s important to learn when you’re being fooled by glamour.
It’s important to know that even if you can’t always see the truth, there is a truth to see.
I know it puts me at a disadvantage, sometimes even in danger, but in many interactions I can only react to what’s there, not to the glamour. I can’t help this. It’s not a choice I make.
Unfortunately, a lot of people want to be fooled by glamour. It makes them feel safer and more secure. It makes them feel the world is more predictable.
Those of us who have to live with the fallout have other ideas.
How do you tell people that sometimes it’d be safer for you as a disabled person to die on a street corner than get care in a hospital?
How do you tell people that you live in a world where the police aren’t gonna protect you?
How do you tell people that the developmental disability service system is largely a dystopia while everyone involved seems to want to believe (or convince everyone else to believe) it’s a utopia?
How do you tell parts of the disability rights movement that hospice is not the kinder gentler alternative to euthanasia, but rather can and often does become a creepy-ass safe haven for euthanasia and worse?
How do you tell people that you can close all the state institutions and group homes and ICF/DDs and have everyone receiving services in their own homes and still basically have an institution?
How do you tell the Independent Living Movement that nursing homes aren’t the end-all and be-all of institutions for disabled people?
How do you tell people that seeking psychiatric help when you’re suffering terribly may be the worst decision some people could possibly make?
How do you tell people that when people like you get murdered by caregivers and family members, most of your society including the judicial system rushes to defend your murderers before they even know what happened?
How do you tell people that people with developmental disabilities can come from utterly dysfunctional families just as much as anyone else and that relying on family for care, or even information about what care to give, is not safe for a lot of us?
How do you tell people that when people like you are abused, neglected, murdered, it’s not because you’re just so difficult to live with that everyone around you snaps?
How do you tell people that all the systems supposedly set up to protect elderly and disabled people (among others) are just as likely to contain us, trap us, even kill us?
How do you tell those people trying so kindly to convince the elderly woman one bed over from you in the hospital, that she needs to go to a nursing home because she falls, that people fall and die in nursing homes too, and people die faster in nursing homes, and nursing homes aren’t protective against anything, they’re just places to forget about people?
How do you tell people that when it comes what’s directed your way, much of what is called loving, benevolent, supportive, wonderful, perfect, even utopian… is a whirlwind of hate and destruction and death?
How do you show them that things aren’t what they have been taught, aren’t what they seem, aren’t what they expect, pretty much ever?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you make anyone care what’s happening to people like you?
People who are invisible beneath all the glamour thrown on top of you?
I don’t know. I keep trying. I keep hold of my rocks with holes in them and I keep trying, I keep trying, I keep trying. If we all keep believing the glamour, we’ll end up eating poisonous garbage and calling it baklava.
One rule of thumb: Love and hate can be actions, not just emotions. If someone tells you they loved their child so much they just had to at least consider murdering them, that ain’t love, people.
God help the critic of the dawn, indeed.
“Noncompliance Is A Social Skill” t-shirts come from RealSocialSkills.org, an amazing website by Ruti Regan. From the about page: “‘Social skills’ is often a slur meaning ‘teaching disabled people to be seen and not heard.’ I am reclaiming that slur by taking ‘social skills’ literally. Social skills really do exist, and they’re not about fading powerlessly into the background. Real social skills are about learning effective and ethical ways to interact with other people. Some of these skills enable us to stop internalizing ableism, misogyny, and other forms of dehumanization.”
Thank you to Cal Montgomery and Ruti Regan, among many others, for continuing each in your own way to do your best to show the reality underneath some of people’s most cherished glamour illusions. It means the world to me that there are other people doing this.
Most people have never heard of Vasili Arkhipov, but it’s quite likely we all owe our existence to him.
He was in the Soviet military during the Cold War. While serving aboard a submarine, he witnessed death and suffering from radiation during a nuclear accident. This had a profound impact on him.
He played a role in the Cuban Missile Crisis that changed the world in ways the Americans were not even aware of until relatively recently when his deeds came to light.
The Americans didn’t know that some of the submarines they were dealing with during the Cuban Missile Crisis were armed with nukes.
The Soviets in these submarines were suffering extreme physical and mental deprivation that was affecting their judgement. They were overheated, dehydrated, exposed to high levels of carbon dioxide, going without food, and being bombarded by intimidation from the Americans, so they were pushed to their physical and mental breaking point. Not a good situation for making rational decisions no matter how good your training is.
Vasili Arkhipov was aboard one of the subs.
In order to launch a nuke, normally there were only two people who had to agree: The captain and the political officer. Arkhipov was in a unique position, because he was second-in-command on this submarine, but he was also commander of the fleet. This gave him a third-person veto power that didn’t exist on the other subs.
The captain and political officer aboard his sub decided to launch a nuke at the Americans. A nuke the Americans were not even aware existed — they didn’t know the subs were armed in this way. If the captain and political officer launched the nuke in the situation they were in, with the USA and USSR armed to the teeth, it’s likely that all-out nuclear war would have devastated most of the planet shortly thereafter.
Vasili Arkhipov remembered what radiation did to people. And he argued against using the nuke. He used the veto power he had. It took an argument. The captain still wanted to do it. But Vasili Arkhipov prevailed and we are all still here as a result.
For his efforts, by the way, he returned to the USSR in disgrace, being told he’d have been better off going down with his ship, and never talked about it due to shame and embarrassment.
Vasili Arkhipov’s story is dramatic. And now we know that he was one person standing in the way of all-out nuclear war.
What we don’t know is how many other times things like that happen, day after day, because someone decides to be the one person who says “No, this isn’t right.”
Probably the world has been saved many times over by the actions of people who will never understand the effects of their actions, and will never be recognized for them.
And even when it’s not on the scale of saving the world, being the one person who realizes the right thing to do and then does it can have a profound effect on the lives of other people.
Which means each of us has an obligation to try to be that person.
It doesn’t mean we’ll get it right.
It doesn’t mean we’ll know the effects of what we did.
It doesn’t mean we won’t be punished for our actions.
But it really is that important.
The developmental disability agency that provides me services seems to have a culture or policy that works against people doing the right thing when they see something wrong going on.
It works against them in many different ways. There are all kinds of pressures on people. To look the other way. To decide they aren’t responsible if they don’t do anything to help a situation. To assign all responsibility for the situation to other people and factors besides themselves. To not act. To not do the right thing. Even if their conscience is crying out that everything they are participating in is hurting people, and that they could step in and do something.
A lot of agencies have this kind of culture, office politics, whatever you want to call it.
But not all agencies have it in the same way or to the same extent.
I used to receive services from a developmental disability agency in California. There was a week where I wasn’t getting services. I ran into trouble rapidly with food, water, medication, hygiene, and everything else I couldn’t do.
I somehow dragged myself into their office, turned my communication device up as far as it would go, and say I hadn’t eaten or had water and wasn’t leaving until I did.
The head of the agency came out of nowhere, drove me home, cooked me meals, made sure I ate, made sure I got water, and cleaned my apartment.
I didn’t ask him to do this. He just saw there was a problem and stepped in to solve it.
That impulse to step in and do the right thing is a good impulse.
I have seen agencies that foster that attitude.
I have also seen agencies, like my current one, that do their best to suppress such pangs of conscience and their results, in their employees.
The thing is, even in an agency culture that tells you to look the other way, that it’s not your fault, that it’s an imperfect system failing someone and not in any way you as a part of it? You can still fight against that. You can still be a Vasili Arkhipov for someone. My agency sure as hell tries to blur the distinction between “We can’t do that for you” and “We refuse to do that for you,” but there is a distinction and it’s your responsibility to figure it out.
And if you do step in and do the right thing… you may not save the world from nuclear war, but you might save some people from needless suffering or even death.
And if you do that only once you’ll have had a major impact on the world for someone.
You can resist the pressure to pretend it’s not happening, pretend you have no responsibility, pretend it’s someone else’s problem. I have seen agencies move mountains to do things that my current agency flat-out refuses to do as a matter of course. I have also seen even individual workers within this current agency go out of their way to help people. They are often punished for their efforts But they know it is right so they do it.
All of us can take a lesson from Vasili Arkhipov.
All of us.
None of us is exempt from the good we are capable of doing. Nor the evil we can allow and excuse if we decide to turn the other way.
A smaller example:
Before seatbelt laws, my mom was part of a preschool committee for my brother. The committee ran by consensus. Meaning instead of a majority vote, everyone had to agree to something. There can be huge problems with consensus, but this is how it was run.
They were trying to make a decision about whether to make the kids were seatbelts on field trips. Everyone in the room decided not to make them wear seatbelts.
My mother stood up. She had worked on ambulances. She described the imprint of a baby’s head on a windshield in graphic detail.
Everyone changed their minds. The kids got seatbelts. Lives may have been saved. I grew up hearing that story, being told to always be that person if my conscience is yelling at me hard enough about something. I can’t say I always manage, but I can say I try.
Next time your conscience is screaming at you, listen to it. Listen hard. Then do whatever you can.
Today I Found Out has a good summary of Vasili Arkhipov’s role in saving the world, if you’re interested.
And remember you don’t have to be a commander of a submarine fleet or anyone special at all to stand up for what you believe in. And whether you save the world or not, you’ll still have an impact. And you’ll be able to live with yourself a lot more if your conscience is clear. J.K. Rowling emphasized in her Harry Potter series that there’s a choice between doing what’s right and doing what’s easy. What Vasili Arkhipov did should be a wake-up call for all of us.
So here’s my challenge to everyone: Be Vasili Arkhipov for someone, sometime, and keep trying. You may never know what good you’ve done. This isn’t about feeling good about yourself, it’s not about recognition, it’s not about staying out of danger. It’s about doing your best to follow what you know in your bones to be the right thing, no matter what.
tl;dr: Listen to your conscience even — especially — when everything and everyone around you seems to be saying not to. You may never know the good you’ll do by doing so. You may never know the evil you might allow to happen if you don’t.