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.
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.
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.
There’s nothing wrong with protecting staff from on-the-job injuries. In fact that’s a good idea. But that’s not really what this is about in the first place. That’s just what they say it’s about.
Despite the fact that many people with developmental disabilities are physically disabled, my local agency does not like giving us help doing things we are physically unable to do. So they come up with a long list of excuses why it’s not possible for them to do those things for us. One of those excuses is staff safety.
I have severe osteoporosis, to the point I’ve actually broken a rib by sleeping on it wrong, developed a stress fracture in my spine without anyone knowing what precisely caused it, broken a hip, and broken so many ribs that x-rays and CT scans of my chest no longer include a number of healed rib fractures, just “multiple”. It’s ridiculously easy to break my bones. I also have congenital myasthenic syndrome, which means that my muscles, while capable of strength at their best, wear out and weaken more easily and unpredictably than average. The combination makes falls more likely and dangerous, especially when combined with an endocrine condition that can turn a broken bone into a life-threatening emergency and that can cause its own weakness once that happens. And there’s more, I just thought three conditions would be more than enough to get the point across. There’s years worth of documentation of these things and more, so my agency can’t claim ignorance. Especially since they go with me to all my medical appointments.
So there is a lot of bending, lifting, and basic physical work that I either shouldn’t be doing at all, or should be doing in a heavily modified fashion. I need the same precautions around certain activities that would be typical of an elderly person with unsteady balance and fragile bones. When I go out, I use a walker to get around because I fell too often using canes and crutches. The walker also makes it hard or impossible to lift or carry certain things, including other assistive technology that’s vital for me.
Anyway, the agency won’t let staff lift a messenger bag I carry with basic equipment I need for communication and feeding tube maintenance.
At first they wouldn’t even explain why. They’d just give it to me and insist I do it, no matter how I was feeling, no matter how unsteady it made me on my feet, no matter how much pressure it put on my muscles and joints, no matter how unsafe it made use of the walker.
When I finally started insisting on reasons, they told me it’s because staff can injure themselves carrying things and that they have a policy that staff are not allowed to lift or carry anything for clients, even messenger bags.
I asked what they do if the person really can’t lift the thing. They got a bit squirmy. Then they said they work something out that works for everyone.
They never did work anything out for me. They never even tried.
They did tell me that people injure themselves lifting bookbags.
Which I could believe.
But I have objections to this as their real explanation for what’s going on.
There’s another agency locally where every client is physically disabled. Staff for that agency are trained in safe lifting practices. I don’t mean lifting entire people. I just mean they are required to be able to lift at least a certain amount of weight, and they even have to pass a lifting test to be able to take the job. They have to both be capable of lifting a certain weight of object over their head, and be capable of demonstrating that they know how to do so safely.
On the other hand, this local DD agency just pretends there’s no such thing as safe lifting and that nobody needs to be trained in it. Nor do they provide equipment to aid in lifting if direct lifting isn’t possible. Not even people who work with physically disabled clients. Of which there are many, because many developmental disabilities have a physical component.
What also gets me about this concern for staff safety, though, is that there is no concern for my safety at all. They know precisely why it is unsafe for me to be lifting and working in certain ways. They know precisely why it is impossible for me to do certain things, and dangerous for me to do others. They know exactly what injuries to my body and even dangers to my life can result from the expectations they are placing on me.
Yet when push comes to shove, I’m the one supposed to be doing bending and lifting that will injure or harm me if I do it long enough, and staff don’t have to do anything. I’m sure that staff can be injured by bending and lifting, especially if they are not properly trained in how to do it. But the chances of me being injured, and injured more severely, are much higher. And nobody has shown any concern for what will happen to me if forced to do these things. Until I asked “What do you do if someone can’t do this stuff?” they didn’t even think about other solutions. And honestly they didn’t even think much about other solutions after that.
The thing is, the actual requirements of their job don’t extend only to helping us out with cognitive limitations. If we have physical limitations, they are required to deal with those. They can’t just pretend they don’t happen.
I think it would be terrible if they didn’t care about worker safety. But my gut tells me this has nothing to do with worker safety, because they don’t really seem to care much about that either unless it’s a handy excuse for something else they don’t want to do. And if they did care about worker safety, they would care about training every single worker in basic lifting practices. They don’t provide that training to anyone I’ve ever heard of.
I also find it telling that whenever it comes to a conflict between my safety and worker safety, worker safety wins out. Even if the situation is only a potential abstract danger to a worker, and has already proven itself an existing concrete repeated danger to me. Not that it should be a choice between either one. An agency acting properly would protect both its employees and its clients. But it’s interesting how no matter how physically fragile you are, it’s always better to them to endanger you than to ‘endanger’ a physically fit able-bodied worker by having them do something that ordinary people do every day on and off the job.
So basically if anyone’s body is gonna break, they want it to be mine or another client’s, as far as I can tell. At least that’s the story their repeated actions towards us spell out. And I am still convinced the concern for worker safety is mostly bullshit, or they’d be protecting them better as well.
An interview of Noreen, a woman with a developmental disability, by Dave Hingsburger, about her time in institutions:
“Do you remember your first days there?”
“Do you remember being happy, being frightened, being sad?”
“I think the first thing I felt was lonely.”
“That must have been hard.”
“But it’s not a nice feeling, to be lonely.”
“No but that’s pretty much all I ever felt, from long before I went in there. So it was just the same really.” Pow! She moved from the community to the facility and it was the same. It is not a place. How do I describe the thoughts that poured inside me and all around me. Noreen stared at me as it was clear that something was happening inside me. I just knew, all of a sudden knew, that one of the errors we had made was assuming that HOME WAS A PLACE. And it isn’t, it isn’t at all. By focusing solely on community living, we focused on COMMUNITY and not LIVING. By focusing on community, we focused on the popular definition of community being a place that was outside a facility. A community is not a place. It is a sense. It is a feeling. It is belonging. It is having anchors. It is being wanted. It is being necessary. I thought that I was hearing about Noreen’s institutionalization as if it was the first time she was segregated. Noreen’s life was made different not by the fact that she was placed behind walls, but because she was of the type that people thought should be placed behind those walls. Noreen began her journey the first time she was turned down for adoption because of who she was. It means that we do not move a person from a place to a place as this ensures failure or even worse CONTINUANCE OF THE SAME THING; we need to move a person from a situation to a situation, an attitude to an attitude. I’ve made so many mistakes.
“Are you alright?”
“Yes, sorry Noreen, but I have so much to learn from you and sometimes the lessons are hard.”
“What did you just learn?”
“I don’t know if I can explain it.”
“Noreen, when you said that you felt lonely just like you always had, I think I realized that the problem isn’t where a person lives but how a person lives. I think I always just saw the institution as a bad place and the community as a good place. Just like the black hats and the white hats in the movies.”
“I know. We’re not supposed to think this, but sometimes people get mad at me because I say that you don’t just move people out of the institution but you move them to somewhere better.”
[I Witness: History and a Person with a Developmental Disability by Dave Hingsburger.]
When people find out the dystopian hell that exists for many of us underneath the utopian dream of community-based developmental disability services, a lot of them respond by saying we need to build institutions again. Sometimes they think they can make the institutions better. Sometimes they don’t bother with that (hello, VOR, nice to loathe you again). They think there is something wonderful or protective about institutions that has been lost. That is not true. Anyone who uses my words to promote institutions is misusing my words, stealing them, twisting them.
The problem is not that we have moved too far away from what institutions are.
The problem is not that we just haven’t found the magic formula for the perfect institution yet but these new ones will be wonderful.
The problem is that in most of the service system we have barely moved away from what an institution is, at all.
An institution is not created by the shape of the building. It’s created by who holds the power, and what kind of power they hold.
Many community-based service agencies for people with developmental disabilities work like this:
You take what a traditional institution was.
You take all the people out of it so that we’re all living in individual apartments or houses.
The same people at the top have all the same kinds of power.
The same people in middle and lower management have all the same kinds of power.
Staff are still staff with their combination of lack of power within the agency and total power over clients.
And because all of those things are the same, lots of things don’t change at all, or don’t change nearly enough.
I will fight to the death for my right to live in my own home. For Medicaid. For the HCBS waiver programs. Not living in a traditional institution means the world to me.
But I will no longer pretend that my agency isn’t institutional in the way it uses power over people like me.
I will no longer pretend that I am not trying to scrabble together some kind of meaningful life living on the ragged side of a nightmare.
I will no longer pretend that what any of us roughly 670 adult HCBS waiver clients in my particular agency get is good enough for any of us.
Because if we all pretend these things, if we play along with the story we’re supposed to tell, more people will live this story.
And more people will die.
So no. Don’t frigging build institutions because of what I say.
Change things so that they’re less institutional. Not more.
And no you can’t build a magical institution that isn’t an institution because you waved your hands and cast a spell that called it an intentional community. That’s glamour. Or in other words bullshit.
People with developmental disabilities have to live with the consequences of your bullshit. That’ll be another post, or three.
But you can’t just change the surfaces of things and expect the insides to change.
You have to change the insides.
And while I will never deny the importance of what people have done. The ability to live in my own apartment. All these things that are meaningful to my survival. The amount of people with developmental disabilities, and sometimes families, who have worked hard to get me the good parts of the life I have.
I also can’t deny that the way many agencies pull this off is more a surface change than a deep change.
And without a deep change, you won’t get anywhere near enough change.
So when I tell horror stories, don’t think “Institutions are better.” Think “We haven’t moved anywhere far enough away from institutions yet.” And keep moving away from institutions. Because our lives depend on it.
And listen to any person with a developmental disability you hear, whether it’s Noreen or me or anyone else, who says our lives are not getting better or our lives are not getting better enough. Because there’s a lot of pressure on us to play shiny happy brochure-ready client brimming over with wonderful changes, and if any one of us is saying otherwise, you want to listen carefully.
I’m gonna illustrate this one with another medical story.
Years ago, I needed a feeding tube. Two feeding tubes, actually. The details aren’t really important. Other than I was gonna die without the feeding tube.
The hospital didn’t want me there.
First, they told me because I had a developmental disability I would need 24/7 care from my local DD agency while in the hospital. A call from my DPA to Patient Relations fixed that massive illegal move.
Then, they tried to kick me out after a day even though I had bad aspiration pneumonia visible on a CT scan and was really sick. My pulmonologist and GP stopped them.
Then, they started coming into my room multiple times a day to try to persuade me not to get a feeding tube. They knew I needed one, so they couldn’t just deny it.. I’d been told on admission I needed one. They admitted I wouldn’t survive without one. They were trying to talk me into going home and dying. And I was weak, and I was sick, and they were wearing me down even though I was stubbornly saying I wanted the tube.
They said all kinds of things. I wouldn’t be able to take care of it. I was just like an infant and would yank it out trying to play with it. I would have no quality of life. My caregivers wouldn’t be able to cope and I’d need a nursing home. My life would essentially be over anyway. I needed to ‘consider the alternatives’ (we checked, they meant death). And this was happening multiple times a day.
So my DPA basically called in a social media campaign to get people to contact the hospital and tell them to stop discriminating on the basis of disability, and to stop pressuring me not to get a tube that was clearly medically indicated, etc.
It worked. I got my tube the next day. Grudgingly. Unnecessarily painfully. But I got it. I’ve been happily living with tubes ever since. And my care is actually easier, not harder. And I’m still alive.
But the first thing a caseworker from my DD service agency told me when I got home?
“You shouldn’t have done that. Do you understand you are jeopardizing our agency’s good relations with the hospital?”
I almost died and did what I had to do to survive. They were more worried about their agency’s social relations with a hospital that has a bad track record treating people with developmental disabilities.
Some agencies are better than others.
But when you’re a client of a developmental disability agency. You have to understand something very clearly. No matter how much people care about you as a human being on a human level. No matter how much they’ll side with you when your interests and their interest are in line…
…It’s still a rare agency office worker who will put you above the agency when push comes to shove. If there’s a conflict of interest, almost always they will side with the agency. There are exceptions. You can’t count on them. Be cautious.
Developmental disability service agencies often teach each other a set of cultural biases about how emotions are meant to be displayed. Even if office workers didn’t come from that cultural background already, the agency molds them into that shape. And the shape is basically an agency-middle-class fear of feelings.
Sure, they talk about feelings. But they talk about them in the abstract. And they have specific ways they are allowed to be expressed, and certain ways they call inappropriate.
You’re not supposed to show emotion in the way your body moves, the tone of your voice, the words you choose. You’re supposed to discuss them in a detached, serene way and treat them like problems.
Clients run into trouble because of this. Quite often we are not from that particular agency culture. By reason of class, culture, or disability.
Front-line staff run into this as well. They are often poor or working-class. They often have a hard time looking like they’re not feelings things as well. This can lead to friction with higher-level agency workers who are trained in agency-middle-class emotional expression.
A friend of mine calls the culture in question — or the people who act like this — Nice Lady Therapists. It’s all about looking nice, never directly showing emotion, sounding bland and detached in a certain way, no matter what you’re feeling or thinking or doing.
Many people with developmental disabilities are gonna have a problem with this for a huge number of reasons.
Of course we come from all cultures and walks of life. But our disabilities themselves can make it hard for us to absorb these cultural norms. (Those of us who can, are gonna fare better in Nice Lady Therapist Land. And there are plenty of us who can, to some degree, do Nice Lady Therapist. I can’t. At all.) We often have different ways of relating socially, different ways of thinking, different ways of perceiving the world, and these things put us at odds with Nice Lady Therapist values.
Not to mention many of us come from actual cultures where those aren’t the values.
I’m an Okie. While I personally had a complicated class background (I call it mixed-class if I have to be brief about it), I come from generations of poor and working-class people as far back as anyone can remember. Culturally, I express myself in a way that’s typical of a working-class Okie.
That means that if I am angry, you can see it on my body. You can see it in the way I move. You can hear it in the sounds I make. You can tell from the words I choose. I don’t mean that I make no effort not to be rude, or that I try to be mean, or something. But if I’m pissed off, you’re generally gonna see that I’m pissed off. It’s written into my every movement. And I’m okay with that.
The same goes for just about any feeling I could have. It’s not that people can always read my feelings accurately. Because of biases and the kinds of disability I have, many people can’t read me very well at all. But even when they can’t read me with perfect accuracy, they can generally tell I am feeling something.
It shows in my movements. It shows in my voice. It shows in my word choices. It shows in my reactions. Even if you don’t know what I’m feeling, you generally know that I’m feeling, unless you’re one of those people so confused by my facial expressions that you assume things are ‘blank’ when they’re not. Which happens. But nonetheless, you can generally tell feelings are going on if you’re looking at all (and most of the time even if you’re not).
Nice Lady Therapists tend to be terrified of anger, but also terrified of emotion in general. They are terrified of it in others and terrified of it in themselves. Someone I know who has worked in the DD field (and Nice Lady Therapists are all over every kind of human services field, DD is just one of them) has wondered if it’s because if they felt emotion, they’d have to feel that what is happening to people with developmental disabilities is wrong. They’d have to feel what their conscience is telling them. I don’t know if that’s accurate. I was a little doubtful. But when I ran it by a long-time front-line staff person they said “Actually… that could be very very right possibly.” So it’s possible that’s one part of it.
There’s definitely class values in play as well. There is in general a middle-class and upper-class fear of emotional expression that is taken out on people who can’t conform to it. And there are cultural factors as well. Some cultures are more emotionally expressive than others, and have different levels of tolerance for it. But for whatever reason, working-class culture often tends to involve this disconnect with certain versions of middle-class culture, which is why I keep emphasizing class.
Disability is also involved. People with developmental disabilities may find it harder to pretend we are feeling something we are not. We might find it harder to detach ourselves from what we are feeling. We might find it harder to act as if we don’t notice something that is happening. We are sometimes more direct or blunt in our communication styles than usual. We might find it hard to act like someone is our social better, even if we are trying to be respectful. We might find it hard to speak indirectly or abstractly about something we are feeling right now. We might even find it hard to speak at all if we are feeling strongly and may communicate through other means. We might find it hard to pretend we perceive the world differently than we do. We might find it had to be abstract about something that’s very concrete to us.
There are so many ways that being disabled puts many of us at a disadvantage here, even if we are doing our best to appear meek and respectful and passive. There’s just a level where we have trouble stuffing ourselves into a corner sometimes.
Unfortunately, if the Nice Lady Therapists are hurting us, this can play out to our extreme disadvantage.
See, the Nice Lady Therapists may be doing and saying things that are causing direct harm to us. They may be denying us help that is vital to our actual survival. They may be threatening us with things that range from vaguely unethical to outright evil.
But they will be generally doing it sweetly, with a smile, and bland, neutral language that does not betray any ‘negative’ emotion, or really much genuine emotion of any kind.
If we respond with outrage — which a lot of us will — we come off looking like the bad guy. And they use that against us.
There was a time when someone associated with me — a working-class woman with a developmental disability — got pissed off on my behalf about medical neglect that was getting so bad I was in danger of hospitalization. She yelled and she said some things that made people uncomfortable. She said exactly what she was thinking. She looked and sounded angry. This was over the telephone. She wasn’t threatening, mind you, just angry.
We were then told that, despite the fact my agency is mandated to meet with me at least once or twice a week (which hadn’t been happening), they had two conditions upon which any meeting would depend. One, we had to not discuss anything that would be related in any way to the grievance hearing about medical neglect. Two, we had to not behave emotionally in ways that would make anyone uncomfortable. I forget how they phrased the second one, but that’s basically what they meant.
The problem was, one thing we urgently needed to discuss during this meeting was my medical situation. This was off-limits already.
Now they were basically telling us we weren’t allowed to be pissed off and show it.
My friend made an attempt to explain that they were imposing cultural norms on us that were not either of our culture, and also discriminating on the basis of disability.
They wouldn’t listen.
I tried to explain that they had a lot of nerve talking about us making anyone uncomfortable given that I could have died and that is really uncomfortable. I told them I would try to be civil but I could not guarantee I wouldn’t be angry and look angry because they were pissing me off. We got hung up on after they told us they wouldn’t speak to us until the hearing. (There was urgent medical stuff they needed to do before the hearing.)
So basically, they’d been putting my life in danger for weeks, but because they were able to be Nice Lady Therapist about it, then even the most threatening behavior they engaged in didn’t look threatening.
My friend flew off the handle about it once and they used it as an excuse to not speak to us about urgent medical issues that they needed to be helping me with. And by urgent, I mean I’d had doctors telling me I belonged in the hospital or the emergency room for months. I didn’t have the luxury of waiting until the hearing.
But their discomfort at our emotions was more important than the very real physical danger they were putting me in. This is the dark underbelly of the Nice Lady Therapist thing. They can be doing things that could result in your death, but if you show any emotional response, you are hurting them.
Personally, I’ve always been of the opinion that if someone is screaming for help, that’s never the time to correct their manners.
Also there’s this deal where DD agencies have to deal with people — as part of what they do — who are gonna be genuinely rude or even violent on a regular basis. As far as I know, they are still required to deal with us. They can’t actually say “I won’t meet with you until you behave” or there are people they’d never meet with.
So like, even if we’d genuinely been wildly unfair and insulting, they’d still have to meet with us.
But they can turn their discomfort into a weapon and use it to claim that if we make them uncomfortable they can avoid talking to us just because they don’t feel like being uncomfortable. Even if we desperately need something from them. And it is exactly when we desperately need something and they are not doing it, that we’re the most likely to get visibly angry with them. And that’s a totally valid reason to get angry.
Mind you, it’s not only anger that makes them uncomfortable. It’s most emotions, if expressed directly. I’ve seen them squirm when one of us expresses joy in a way they don’t find appropriate. I’ve been put on behavior programs for being excited in a way someone said was socially inappropriate. (Flapping and squealing and jumping around, if you have to know. It wasn’t like I was hitting people. In none of the things I’m describing here did I do any harm to anyone.) They’re genuinely afraid of emotion.
They train each other that emotion is wrong. They teach each other how to be, or look like, Nice Lady Therapists. They get both formal and informal training on how to redirect us away from showing emotion, how to punish us for showing emotion, how to hide or punish our emotions as much as possible so that they won’t become uncomfortable.
My file has something ridiculous in it.
It contains a blow-by-blow description of what I look like when I’m pissed off.
And literally all it says is that my fingers hit the keyboard I am typing on harder than usual. So I type in a way that looks angry when I’m angry.
Mind you, I don’t get angry all that often. Certainly no more often than the guy who wrote that file.
I have asked them how they would feel if they had a fight with their girlfriend or boyfriend, and then someone wrote down exactly what shade of red their face turned and how loud they yelled and which body language and cusswords they used, and put it in a file for strangers to read.
Because there’s nothing unusual about sometimes getting angry and sometimes looking angry. It’s just that some of us in this world have privacy and some don’t.
So back to the file.
It also contains instructions on how not to piss me off.
They basically amount to manipulating me.
They haven’t figured out yet that I can see through that kind of manipulation especially well.
They haven’t figured out yet that the fastest way to genuinely piss me off is for people with real power over my life to manipulate me into thinking or behaving how they want.
So they manipulate me more, figuring I’ll get less pissed off.
I’ve told them the problem here, but honest and direct communication is not something they’re willing to do.
And as much as they love to spout crap about cultural sensitivity, they’ve never been remotely sensitive to my cultural background when it comes to expressions of emotion. They act like these background differences don’t exist, for any of us. When culture, class and disability play such a huge role in how we show emotions. And when we are punished for showing emotions in a way that doesn’t go with Nice Lady Therapist culture.
So the Nice Lady Therapist can be saying “I am about to do something that will result in your death or serious illness.”
But the problem, then, is that we’re pissed and making the Nice Lady Therapists uncomfortable.
I beg to differ.
And mind you I will bend over backwards to be respectful when I can. It doesn’t mean I don’t look and act pissed when I’m pissed, though. And it doesn’t mean I will remain 100% civil when my back’s against the wall. And even if I said things that were horribly unfair, they still technically have to deal with me. But I didn’t.
Anyway, there are human service agency cultural norms around emotions and their appropriate and inappropriate expression. Somehow the way they apply these norms always ends up with agency management at the top, people with developmental disabilities at the bottom, and front line staff often damn near the bottom themselves.
And this can have consequences that are more than just an annoyance.