Caregivers and abuse and murder and neglect (content warning for every-frigging-thing).
Right now I have one of the most amazing teams of caregivers I have ever had. These are people who get paid shit wages to come in and take care of me, mostly stuff involving housework, feeding tube care, and personal care (a euphemism for things like having your ass washed by someone else).
And they not only come in and do it, they do a really good job, they’re respectful, and we get along really well. They’re not my friends, and I always maintain that boundary because it’s really important to me. But they are people who I like, that I miss when they are gone, and who feel the same about me. It’s a weird kind of relationship because it’s more intimate by nature than a lot of working relationships, and yet it’s not a friendship, and trying to turn it into a friendship practically never works — you end up having to choose, friend or staff. There’s too much of a power dynamic there.
And it’s the power dynamics I want to talk about. Nondisabled people hear the words that we use for staff and they don’t get it. They hear ‘staff’, which is a holdover from institution staff. Staff is a word that generally has a connotation of being below someone in a hierarchy. But what staff means in an institution or an agency setting is that the staff are at the bottom of the hierarchy of employees. There’s one group of people below them — the disabled people. So when a disabled person says “This guy’s my staff,” sie means, “This guy has tremendous power over everything that happens in my day, and yet is powerless over his bosses at the agency, which can be a dangerous combination for me because I’m the only person he can take his otherwise powerless status out on.” Sort of like how a child in an abusive family may take it out on the dog because the dog is the only person with less power. In developmental disability agencies, we are the dogs, power-wise. And that goes even in good agencies with good staff — it doesn’t make the power go away.
And some disabled people, especially physically disabled people, have tried to come up with fancy names to mask all this. Personal attendant, personal assistant, things that sound like what a bank manager has. But it doesn’t stop the fact that when it’s time to transfer into bed, that ‘personal assistant’ of yours is the one with the power to do it and the power to choose how to do it.
One of the worst things about caregiver abuse is it’s nearly impossible to prove. I had an LNA punish me for being unable to wash myself, by scrubbing me so hard it hurt. I told her she was hurting me, and she smiled really big, said “Thanks for the feedback!” in a bright cheery voice, and scrubbed harder. We tried to talk to her supervisor, but her supervisor said that it was all okay because it was in the name of motivating me to do more for myself. (I was lying in the hospital with pneumonia, delirious and near adrenal crisis. I wasn’t doing a damn thing for myself and it wasn’t the time or the place for anyone to decide to teach me a lesson.)
That’s how physical caregiver abuse works though. It’s often extremely subtle. It can be a matter of how hard they jolt you when they transfer you. How much anger flows through their arms as they scrub your body. These are not things you can quantify on a checklist. They’re not even things that an eyewitness can always pick up on. They’re just subtle differences from the way you would do things if you do them right.
And there’s judgement calls. I had a caregiver once who treated me like a piece of wood. But not just like a piece of wood. You know how when you’re in the kitchen and you’re mad, you slam the plates around, you slam the cupboard doors shut, you make unnecessary noise and use unnecessary force? Well when she was angry about something, and it didn’t have to be anything about me, she would do all those things to me. She would turn me over in bed harder than she had to, she’d hold my body down too hard, she’d scrub too hard, she didn’t even realize she was doing it. Because to me, I wasn’t a person, I was an object. I was just one in a long line of bodies that she had to scrub to get through her day. And I was only a body, I was not a person.
Another time I was sexually abused by a caregiver and chose not to report it. It was, again, too subtle. I still don’t understand how you prove, to an agency that has a vested interest in protecting its workers, that a touch was a caress and not a clinical touch. There’s a difference. I could feel it. It made me feel exactly how I felt when I was molested as a child. But it wasn’t genital contact (well there was contact with my genitals as she washed them, but there was nothing special about the way she washed them as opposed to the way she washed the rest of me), and it was so damn hard to prove that she was getting off on touching me in a certain way. I knew I could endure the abuse better than I could endure the scrutiny that would come after reporting the abuse. And given that this was an agency who protected someone who took a swing at me in front of witnesses, I had no reason to believe that someone caressing me with no witnesses would get in the slightest bit of trouble.
So much of caregiver abuse, in the physical and sexual realms anyway, is a judgement call like that. So much of it is something that can never be proven. And yet a lot of that stuff is where the power lies.
I once helped another client defend her right to have her staff stay out of her living room. We did it as politely as we could but I ended up having to literally stand between her and the living room. Her staff threw a temper tantrum and refused to make her dinner. (And then took a swing at me when I said this was a form of caregiver abuse.) Refusing to make someone dinner because they tried to exert power over their own belongings in their own home, is a classic form of caregiver abuse. The staff person then tried to make me leave, which of course I didn’t do — never, ever leave a client alone with an enraged staff person. I found it very ominous, as did her client, that she wanted me out of the room so badly. We didn’t know what she was planning to do to her when I left.
And that’s the thing: No matter who holds the purse strings, staff always have power over disabled people. Even if we go self-directed. Even if we hire and fire people ourselves, and decide when to give raises and other things like that.
Because always. Staff can decide:
- When we go to bed
- When we get up in the morning
- Whether we get out of bed at all
- Whether we get into bed at all
- Whether we get food and water
- Whether we get our medications
- Whether our homes get cleaned
- Whether our pets get looked after
- Whether our groceries get done
- Whether our food is prepared
- Whether our butts get cleaned
- Whether we go to the bathroom
- Whether we get our bowel programs
- Whether we get our catheters, feeding tubes, trachs, etc. taken care of properly
- Whether our belongings are put within our reach so that we can use them when they are not around to help us
- Whether phone calls get made
- Whether appointments get set up
- Whether rides to appointments get set up
And not just whether, but how these things happen. Whether they’re done in a civil way, or whether they slam everything around, including our bodies. How much time is spent on things, whether they rush through everything making lots of mistakes or take their time to do it right.
And there are plenty of wonderful caregivers, but even the best caregiver always has the power to become a bad caregiver if they wanted to. If they got mad enough, they could take it out on us, and often they do, because people in hierarchical cultures tend to take out things on those beneath them in the hierarchy.
Worse, when we try to complain about things, I’ve heard a lot of people who don’t have caregivers, say really snide things about it. Like, “Oh, you can never trust the help.” As if having a caregiver that you depend on for everything, is the same as being a rich person with servants. That one really bothers me because even though caregivers are usually at the bottom of the employment hierarchy, they don’t answer to disabled people, they answer to their case managers, who answer to people higher up in management. There’s an entire hierarchy in agencies with disabled people firmly at the bottom of it. And disabled people tend neither to be rich nor powerful in these situations. It’s an insult to imply that there’s anything related between a rich person/servant dynamic and a client/staff dynamic.
Withholding care is a big way that caregiver abuse happens. It can happen where one caregiver withholds care, but it can also happen where someone higher up in the agency withholds care. I at one point had an absolutely wonderful caregiver who went above and beyond the call of duty by working for me for free when her boss decided that I was too annoying and that she was simply going to stop hiring people to work for me. (The boss had no conscience and enjoyed putting clients in awful situations. Her specialty was separating clients from our favorite staff. Also having confidential, seemingly friendly meetings with staff where she’d gather blackmail material so she could get them to quit before they were fired. Real piece of work.)
But it can also be staff who withhold care. One thing that really upset me when I moved to Vermont, was that I did not get a say in unpacking my apartment. My staff person told me it was unreasonable for me to tell her where to put things, so she just put things wherever she felt like. It would have taken two seconds for me to point to where things should go, but she didn’t want to take the two seconds. She made me feel like dirt, like this demanding horrible person, for wanting to say where my own belongings went. I asked a lot of case managers and staff about whether I was out of line in that instance, and they all told me that she was the one out of line. It got bad enough with her that someone called Adult Protective Services and to this day we don’t know who it was. She insisted I must have arranged it, but I didn’t. I wasn’t strong-willed enough at the time to do something like that. In fact when APS called I told them the situation was resolved and to go away.
I know several women who have horrible yeast rashes under their breasts and between their buttocks, like ones where the skin is actually splitting open, because caregivers are not helping them with the kind of lotions needed to prevent that rash. I used to get those rashes when I had big breasts, and they are incredibly painful. Failing to provide medical treatment like that is another form of abuse. I’ve never had anyone refuse to treat my yeast rashes, but I have had people allow me to lie in my own vomit for hours, resulting in long-term acid burns on my skin.
I’m not saying any of this to dump on caregivers. I actually sincerely love each and every one of my current caregivers, none of whom have shown the slightest sign of doing these things. But I’ve seen the best and the worst of the community DD system, and the worst is really bad.
I think the worst I ever found out about was a woman who was, for years, locked in a room of her house, naked, with only her own shit to play with, which of course she did because what else was she going to do, and then they’d use that as an excuse to keep her that way longer. This was not a formal institution but you can bet it was institutional community care. Which is a thing. You can have an institution with just one inmate if you pull it off right, and that agency specialized in taking people out of state institutions and putting them in institutional living situations in their own apartments. (This is the same agency with the conscience-free case manager.)
Sometimes I worry talking about this, though. Many parents of disabled children fear that their children, as adults, will be abused, molested, or neglected in the system. Those are definite risks. But then the parents sometimes say “I’m the only one who can take care of them properly. So if I die, then my child has to die too, otherwise they’ll be abused and neglected their whole life.”
That’s not how the system works. There’s abuse and neglect, but that’s not the whole system. And even when it is what the person is experiencing, you don’t have a right to kill someone to remove the possibility that they will experience it. Because even when you’re being abused, there are other parts of life, and you can still be glad you’re alive. And nobody has the right to take life away from anyone else on any grounds like that, ever. I am so glad that my parents have never thought that they are the only people who can take care of me.
And the ridiculous part, to me, is they seem to think abuse will be more likely from strangers taking care of their children. When they themselves may be abusive or neglectful towards their children. And usually abusers are someone known to the person, often someone from within the family. So keeping everything within the family doesn’t get rid of abuse by any means. I’ve been sexually assaulted by two relatives, four fellow inmates of institutions, and one staff person. So that’s twice as many family members as caregivers, and what the caregiver did was much less awful than what my family members did.
And the thing is also that life doesn’t end with sexual assault. Sexual assault is horrible, and you never fully get over it, but it doesn’t mean a person’s life is over and they are better off dead. Encouraging people to think that about disabled people is horrible. To me, the biggest red flag a parent of a disabled child, or a pet owner, can possibly throw out there, is “Nobody can take care of them like I can. Nobody is fit to take care of them like I can.” Because that almost always leads to thought of “Maybe I should kill them before I die myself, so that they don’t have to endure the hell that is being taken care of by anyone but me.” And once you have the thought, you have the potential for action.
And that could be me, if I had different parents. That could be you, any of my disabled followers. It could be some of you, right now. Some of you may have parents who are plotting to kill you when they get old enough or sick enough that they think their death is imminent. This is real. I’ve seen it. Parents do a lot of disturbing things when they think their children won’t be taken care of properly. And the two main things I see parents doing when their own death is approaching and their child is not in a secure caregiving situation and the parent really doesn’t get that other people can take care of their child without the world collapsing… is either institutionalizing their child in a way the child doesn’t want to be institutionalized, or killing them (or at least talking about killing them).
I can’t say how much this scares and enrages and terrifies me and makes me badly want a way we can get disabled people out of these situations. I just encountered a disturbing letter today from a mother who believes that her child will never be happy if they have to rely on paid caregivers (because apparently being paid means they’re only in it for the money, which is laughable if you know how much they make), and that she wants to kill her child so that the caregivers won’t ever have a chance to do horrible things to her (adult) child.
And caregivers do sometimes do horrible things. People do sometimes do horrible things. But despite everything I’ve said in this post about the way a bad caregiver can make life hard, making life hard is not the same as making life not worth living, and I worry so much about the adult children of parents who can’t realize that. Because they either put their child in an overprotective institution situation or a pseudo-utopian farm community, looking for the perfect “placement” for the rest of their child’s life, with no consultation with what their child wants. Or they start talking murder. And neither of those are acceptable.
And again — a shout-out to my caregivers for being amazing people who aren’t like that at all. And by amazing I don’t just mean they’re decent, I mean they’re truly amazing and I feel lucky to have them. I actually look forward to them coming every day, which is a far cry from when my first caregiver walked in the door and I ran outside and started frantically lining up sticks because I couldn’t stand someone in my house and felt like order needed to be restored by arranging sticks in pleasing patterns. Another time I tried to hide under a chair, but only my head would fit. Now, I actually look forward to people showing up, I look forward to our interactions, I look forward to joking about how disgusting my feeding tube can get, I look forward to sharing music with them, I look forward to all of it. And that is what a good client/staff relationship can look like.
How to impress upon people that they shouldn’t forget a medication.
Me: Did you do the dexamethasone?
Sub Staff: No.
Me: Just so you know, that’s the one medication I die without.
Sub Staff: Oh wow um well in that case…
Not that I’d die from missing a dose, but when someone isn’t very familiar with my meds, it’s really good to impress on them the fact that this particular med is not the one you want to forget. (This guy is very competent, I just have a very complex med regimen and he’s only done a night shift here twice. So don’t think I’m putting him down, he’s a great guy.)
There’s a post going around right now. I’m confused about the implications of reblogging it.
It’s written by a woman in California who is the guardian of and primary caretaker for her developmentally disabled older sister. It contains some stuff about how the CA DD services system sucks that I agree with.
But I’m really uncomfortable with the claim that, with the exception of its use of mental age terminology, the post is a good example of respectful caregiving. FFS, the OP included a photo where she’s holding her sister in place because she wanted to take a picture with her sister but she wasn’t interested. There’s an automatic assumption that of course people who need support with pretty much all ADLs couldn’t possibly vote. And there’s a total unwillingness to consider that her sister might have valid reasons for not walking sometimes.
If this is what counts as respectful caregiving, we need to be aiming a lot higher.
There’s also an assumption that when her sister’s legs don’t work, it’s because her sister doesn’t want her legs to work, and as a person with a complex movement disorder that is very poorly understood, that is extremely triggering to me.
Also as someone who witnessed the brutal mistreatment of an elderly woman with an ID who fell a lot and was always told “You have two legs and you can walk if you want to and I won’t help you up” by all the staff, and that was “okay” because her parents had told them it was okay, no matter how badly she was injured by repeated falling. She was clearly very ill with something, I could see it inside her, I can’t explain, I could see that she was in severe pain and I could see the way she moved showed illness that wasn’t being treated. I am afraid she is probably dead by now of something that was never treated because they said she was falling on purpose to get attention.
So whenever I see someone accused of not using their legs because they just don’t want to, I remember that woman, and I also get very triggered because of my own experiences. And I cannot see that as respectful caregiving. Cannot. Ever. Ever. Ever. I don’t care how well you think you know someone, I don’t care how long you’ve spent with them, I don’t care how closely you are related to them, unless you are that person you don’t know why their legs don’t work.
And most of the time? Most of the time? When people with developmental disabilities show signs of physical problems like our legs failing to work? It’s because we have a physical impairment that is not being properly diagnosed. I have literally almost died, more times than I can count or remember, because people have assumed that I was just being noncompliant or something when I couldn’t do something because of a serious medical problem. And you don’t know humiliation until you’ve been yelled at for shitting the bed in the hospital during an adrenal crisis brought on by pneumonia, and a bunch of people stand around discussing how they can’t “let you” shit the bed because then you’d “get used to shitting the bed” and “never use a toilet again”.
This is how people think of you and your needs when you have a developmental disability. They think you’re always trying to get away with something. They think you’re doing something sneaky in a childlike way. They think everything but that you might have a serious medical disorder causing problems that could kill you.
And this includes the people closest to you. This — at least potentially — includes your brothers and sisters and parents and cousins and grandparents and all of your caregivers and doctors. This is how everyone thinks of you.
I read that post and all I got was triggered.
I could not believe that it was being held up as an example of respectful caregiving.
It’s not that I think she’s not trying to be respectful, sometimes. But she’s not getting there. And it was very unpleasant, because…. when I read something like that, I always go to the place where I am the person being talked about. Where I identify with that person. I don’t identify with the caregiver. I think a lot of people identify with the caregiver. I think a lot of people can’t even imagine what it’s like to be the person being cared for.
But I can. I was a California Regional Center client (under the same Lanterman Act she’s having trouble getting services from… the Regional Centers fucking suck and will withhold services from as many people as they can for as long as they can for any reason whatsoever because it saves them money and money is all they care about) for five years. I have been a client of Vermont’s developmental disability system since 2005. I have been a client of some developmental disability system for almost my entire adult life. This means I know what it’s like to be on the receiving end of developmental disability care, and I’ve received pretty much everything from the best to the worst care the system has to offer.
Luckily, I am not cared for by my family, because they don’t know how to take care of me and they don’t know my needs. I know that sounds extremely strange. They’ve known me my whole life. But just because they know me as a person does not mean they know my needs as a disabled person. I think they could learn if they had to, but it wouldn’t be a good fit at all. My parents are too severely disabled to take care of me (right now my mom is the primary caregiver for my dad who has terminal cancer, and she’s collapsing under the strain due to her own neuromuscular disability), and my brothers are too busy and unaware of my needs. Just because we’re related doesn’t mean they understand my disabilities or what I need based on them. I can only think of one member of my immediate family I’d trust to be my caregiver, and I still don’t think it’d be a good fit. It’s just the least bad fit.
And I get that she has no choice. But that doesn’t make her a good caregiver. It doesn’t make her respectful. It just means they’ve both been landed in a situation beyond their control and they both probably hate it and want out of it for totally different reasons. And I know I’m judging from a distance, but I am the one who gets taken care of and I know what certain things are like.
And being blamed by the people closest to you when your body doesn’t work the way you expect it to? Is shitty beyond shitty beyond shitty. When a developmentally disabled person with a severe communication impairment starts having what looks an awful lot like physical problems with her legs, what you do is you start looking for every possible medical answer that could possibly explain it. Because DD people are not, contrary to popular opinion, in the habit of malingering. We actually malinger at a lower rate than most people do. But we’re accused of malingering constantly, constantly, constantly. We’re under constant suspicion by everyone from our families to medical staff. And it’s because they think we’re children who want to get away with staying home from school with a fake stomachache. That’s how they see us. They see things as behavioral rather than medical. When the overwhelming majority of the time, when a DD person has medical symptoms it’s because of an actual medical problem. And medical problems can be deadly, so it’s very important to find out what the medical problem is, not blame the fucking victim.
So unless you’ve had people standing around your hospital bed discussing whether to let you “get away with” shitting yourself in case you somehow got the idea that you would never need to use a toilet again in your life, or have had some equivalent experience? Then fuck off, and don’t hold this kind of thing up as a model of respectful caregiving. Being in a situation like the disabled woman in this post is one of my worst nightmares, I can’t imagine what kind of person you’d have to be to miss how nightmarish it would be to be thought of in the way she’s being written about here. I mean so many people are missing it that it must not be as obvious as it looks to me. But to me it’s very obvious that this is not exemplary caregiving. And it makes me feel like people think it’s okay to settle for less if you have a developmental disability, like it’s okay to settle for crap like this if you are nonverbal, like somehow being DD, ID, nonverbal, whatever other thing, make all of these ways of looking at you and talking about you okay.
They really, really don’t.
And there really is a simple test to tell whether a caregiving situation is a good one or not: Imagine yourself as the person being taken care of. That’s all you have to do. If it feels awful, then it probably is awful.
And if you ever catch yourself doing this little mental shift: ”It would be awful for me, but it’s not awful for her, because she’s not like me.” Then that means it’s probably awful for her too, because she doesn’t get to do that mental shift. She has to live with it as it is, and being DD doesn’t make her so different from you that it’s not awful for her.
I just… can’t.
One thing I have found is that I had to learn to stand my ground about not allowing in bad ones. I used to think that I had to put up with anything and everything short of horrible abuse (and sometimes even put up with horrible abuse, including sexual abuse) in order to prove that I was a “good client” and not “one of those bad clients who sends their staff away”. And I was encouraged in that direction by abusive case managers. But the turning point for me with caregivers was actually when I filed a complaint against an abusive case manager and won. And in general, a lot of turning points for me have involved standing up to people.
But you have to stand up to them in the right way. If you stand up to them ineffectually, it’s just as bad or worse as not standing up to them at all. I’ve met people who think that they’re assertive and the sort of person that nobody could possibly walk all over — while people walk all over them. Usually they’re people who will sit there and rant at someone about how wrong what they are doing is, or threaten them with action, but there’s no follow-through in any way that actually uses power effectively and there’s often a lot of excess aggression thrown in. (And abusive caregivers will simply let you burn all that excess aggression off which hurts you and doesn’t harm them or stop them in any way.) And I’m not good at explaining the difference. And there is not always a good way to stand up to them, and sometimes it is better not to stand up to them.
If that sounds contradictory it’s because it’s complicated, and maybe it’s not the kind of thing I’m capable of explaining well.
But I do know that being assertive — not wildly aggressive, and not meek — has almost always gotten me more respect from people than any other way of dealing with people. Setting actual boundaries and keeping to them. Things like that. People actually respect you more when you set boundaries than when you let them through your boundaries. Even fairly decent people will be somewhat less respectful if you don’t have clear boundaries. Which is horrible, but it seems to be the truth.
As far as good working relationships go, one thing I learned from watching my mother interact with people is that she asks them a lot of questions and lets them talk about themselves and that seems to make people like her more. And I’ve found in addition to that it’s good to acknowledge that they’re doing hard work for very little pay. And in general to do little things that show you know they’re human and not a programmable robot or something. A lot of which should be obvious but isn’t always, especially to people with social skills problems (whether those problems are innate or come from never having had the social experiences most people had growing up to practice those things, and for autistic people I think it’s a combination of both and more).
I want a movie where…
…a disabled person’s anger at their caregivers is viewed as justified, rather than displaced anger and self-pity regarding the fact that you’re disabled at all.
Yeah, I’m lookin’ at you, Passion Fish.
Which, by the way? When I complained (years and years ago) about caregiver neglect/abuse/incompetence on an autism forum where most people did not have caregivers? A “helpful” person recommended that movie to me, told me I’d like it and find it useful.
The basic story is about a paraplegic woman who keeps having problems with caregivers and firing them, until she gets one caregiver (a Magical Negro, IIRC) who “sees through” her anger and recognizes it as self-pity over being disabled, and then proceeds to get her to quit drinking and become a happier person and all this shit.
This is what I was recommended by my fellow auties when I complained of caregiver abuse and neglect and incompetence.
This is what I was recommended by my fellow auties when I complained that I was only getting two meals a week.
One autie, who had never seen me in my life, proposed the idea that I passed as neurotypical (I don’t and to my knowledge never have). And that the reason I was being neglected was that I “didn’t look like I needed help”. And that I should look at it from the perspective of a hard-working, working-class caregiver who has always had to work for everything they’ve got, who has to come into the house of someone who “doesn’t look like anything’s wrong with them” and is getting something for nothing.
I never did get an apology from this woman when she saw exactly how autistic I look.
Not that it should’ve mattered. Even if I’d passed for NT, my caregivers were literally starving me. They were not following their own job descriptions. And when they did actually cook for me? Sometimes they were so incompetent that they’d put large chunks of rock salt in my rice, or for “beans and rice” they’d give me rice with entirely uncooked, rock-hard beans. So even when I was given food, it was often inedible.
The recommendation that I watch, and gain ‘wisdom’ from, Passion Fish, under the circumstances especially, was insulting and offensive. Fortunately I didn’t actually see it until years later, or I’d have been so furious I’m not sure what I’d have done.
So I want a movie where a disabled person’s anger at their caregivers turns out to be justified because of abuse or neglect or something along those lines. Not one where it’s just displaced anger that is “really” just anger because they’re disabled, or something along those lines. (Because you know that when disabled people get mad, it’s really because being disabled makes us angry and bitter and self-pitying, and what we really need is a good kick in the ass from an abled person to help us see what we are doing in a new light.)
Also just the fact that I was on a mailing list for autistic adults where I was the only regular poster who had caregivers, said a lot. As did the fact that people who’d never been in the situation felt perfectly justified lecturing me about it, based partially on really bad movies they’d seen about disability. I did try to tell them “I heard that movie was full of really bad disability stereotypes,” only to be told something like “stereotypes have to come from somewhere, it’s a good movie, you’ll really relate to the main character”.
Yeah I’ll relate to the main character who is painted as too picky about her caregivers and too angry at them for no reason, while I’m starving, and being fed literally inedible food, when I get fed at all. And I’m supposed to “understand” how these “hardworking” caregivers see me, which this person is only guessing (badly) at anyway. (From what I could tell from actual conversation with caregivers, most of them assumed I had serious brain damage, if they weren’t told my disability. So, no, they weren’t thinking I was nondisabled.)
So. Again. Movie where at least some caregivers are abusive, neglectful, incompetent, or some combination of the three. Because that’s not rare, but is rarely portrayed. And where the disabled person or people get angry about this. And where the disabled person’s anger is portrayed as justified. And not as displaced anger at their own disability. Maybe their anger even makes them do something like file a successful APS complaint or something. This would be wonderful.
Also knowing more autistic adults with (formal or informal) caregivers would be wonderful. I know there’s at least more of us here than there were among the active members of that list all those years ago. If there had been people with a lot of paid caregivers coming in and out a lot, there would’ve been someone who related to what was going on with me, because you can’t have more than a certain number of paid caregivers without running into some who are either neglectful, abusive, or incompetent. Sometimes all three at once. I’ve got a really good set of caregivers right now — utterly wonderful people — but I never take that for granted.
It could be good and bad. I don’t think it would ever replace humans fully, but it could be good for some tasks more than others.
The current set of caregivers who come in to help me do most of the day-to-day stuff are excellent people. They’re good at their jobs but they’re also just people I like being around.
The people who come to do personal care range from excellent to meh, but I only see them for a much briefer part of the day, so as long as they’re not grossly incompetent it doesn’t matter.
My main doctor is amazing, and so are his nurses. My other doctors range from good to great for the most part, with a few exceptions.
When I’m actually in the hospital for an inpatient stay, it’s a completely mixed bag. On average I end up liking nurses better than doctors (they generally deal more with patients, and understand us better), but it’s very individual who I like and why. I can’t generalize too much because the inpatient hospital has a wide range from super-competent all the way through down to “how is it that this person hasn’t gotten sued out of the business, for repeated malpractice?”
There’s a book available that’s normally over $100, for around $15, if you want it.
If you’re really serious about reading a well-footnoted book about violence in the lives of disabled people (especially but not limited to people with developmental disabilities), this book is it. I own a copy myself from when someone sold one for $20 on eBay. Normally they go for $120 or more because they’re so rare. Occasionally someone sells them for less. Someone on Amazon is selling one for less.
It’s called Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance? by Dick Sobsey. Dick Sobsey is the father of a man with a severe intellectual disability, as well as an educational psychologist who has devoted his life to studying abuse and murder of disabled people with an eye to ending it. He used to run the mailing list for the International Coalition on Abuse and Disability.
This book is dry and it’s a hard read, but if you really want data you can point to, this book has it, in spades. I am never letting go of my copy, because I never know when I’ll find another one. It’s that hard to get.
Musings about a couple frustrating shifts
Oh wow was yesterday night exhausting. I got the guy who takes forever. He’s either so nervous it’s causing cognitive problems or nervous because he knows he has cognitive problems. But he’s so slow and careful he can’t complete all the tasks in a shift. He also couldn’t follow instructions without me repeating them a lot, couldn’t follow instructions with two or more parts, and couldn’t remember simple things over a period if five minutes. It’s just hard to tell whether these things cause his nerves or are caused by his nerves.
I’m really, really good at spotting disabilities in people who help me because I know all the tricks to hiding them. I hope that’s not what I’ve spotted here. I hope he’s just got temporary nerves. Those are much easier to deal with. Otherwise I’ll do everything I can to help come up with ways around things… but if those don’t work, especially on things as important as meds, he’ll have to stop working for me.
I always feel guilty when disability is a reason I have to fire someone, because I know how hard it is to find work. So I always try my best to find adaptations. But sometimes it works really badly to have someone with certain cognitive issues helping me with things I can’t do for the same damn reasons.
But this guy mostly gives me the impression of trying so hard to do things right that he does them five times as bad as he otherwise would. He’s incredibly earnest. The other problem here is that he gives me no downtime during his shift. Every ten minutes, or less, he is in my room making small talk or asking questions or just standing in the doorway staring at me.
That’s exhausting. That’s so exhausting it’s impossible to keep up. I need time to be alone. They’re told this before they come in. Even new people are given so many detailed instructions they rarely have to do this.
And I feel guilty even complaining. Because he’s not mean. He’s not doing this on purpose. He seems as earnestly sweet as I’ve ever seen. But he still is managing to make me so overloaded I can’t even think or function, my pain levels get worse, I get irritable, etc. Plus he can’t even finish the shift. It takes him 15 minutes per medication. Which means a set of 4 meds that should take minutes, takes an hour, after he’s already familiar with them. Which means nothing else in the shift gets done but meds, ever.
And he has trouble with instructions like “Please take a butter pecan Ensure from the left side of the fridge, and a strawberry one from the right.”
As I said, I have trouble with these things too. But there’s a reason I’m not working as a caregiver for people with cognitive disabilities. There’s no amount of adaptation that would make me good at this, at least not the way it has to work with me.
I’m surprisingly good at providing very minimal care for others, but it has to be something they can talk me through. I can do lots of things being talked through that I can’t do myself. So in emergencies (no staff available) I’ve done everything from toileting, dressing, applying medications, to picking little things off the floor, organizing papers, etc. for other disabled people. I can do things for others that for cognitive reasons I can’t do myself — I can’t direct myself the way others can direct me. And I can see someone’s ass to wipe it even if I can’t see mine. Things like that. There’s all kinds of cognitive and sensory and multitasking things that make the difference here.
And I absolutely love the kind of interaction where I can silently help someone else without having to type a single word myself. I can do something physical while they talk to me, and it all works out. It’s very comfortable. My only limitation is fatigue, muscle weakness, and pain, which is why the number of tasks has become more limited. But I’ve always loved that kind of work for some reason, and intimate care doesn’t freak me out or gross me out easily so I don’t impose my disgust or other feelings on other disabled people the way some other untrained people do.
(It’s amazing what disabled people can do for each other in a pinch. Although I’ll never forget the time my friend, also a chair user, overestimated her capabilities and dumped me on my face out of my own wheelchair. We laughed our asses off — there’s a reason she’s no longer allowed to be a paid caregiver, since her physical impairments progressed.)
But I couldn’t do it as easily for someone in a situation where it’s too hard for someone to give basic instructions, or where I couldn’t quickly learn and remember the instructions for future times when they might have trouble. The problem is, I have exactly that kind of communication problems. So I can’t easily give instructions. Often can’t at all. Before I got good case managers, who wrote up detailed instruction sheets, my care was a mess.
I also need long periods of solitude, when people leave me alone and do stuff in the other room,or I get exhausted. Can’t deal with a whole unbroken shift of interaction every 5-15 minutes. It seemed like every time I turned on my Kindle to read an audio book, this guy came in yammering at me without even noticing my headphones. That’s enough to make me as jittery as he seemed to already be.
I don’t know what I’m getting out of typing all this out. It’s just been really hard, even just two shifts of him. I’ll have to talk to my case manager about what to do.
It will either involve:
Dropping him or minimizing his visits.
Drilling him on meds — outside my real shifts — until each clump of meds takes 15 minutes, instead of each pill taking 15 minutes. And teaching him how to handle the equipment — like the little plastic things that let you draw liquid meds into an oral syringe don’t stay on the syringe while I’m trying to squirt it into my mouth.
Finding out if he has actual cognitive or emotional impairments that affect his job. And then seeing whether there’s a way to make the job more accessible, or whether he just can’t do it. (Taking into account my own cognitive and communication impairments.)
Or some combination. But things can’t go on like this. My pain level, in particular, will skyrocket if he keeps interrupting my distractions and solitude. So will overload.
And of course we have to do this all in a way that won’t cause him the kind of paralyzing nervousness he already has.
I’m exhausted just thinking about it.
But this post has gotten me thinking about how weirdly good at this kind of job I could be if I had the physical and mental stamina to pull it off. My friends who are also disabled tell me I’m better at the tasks they’ve had me do than many of their trained, nondisabled staff. I suspect it’s because I’m good with details and I try really hard to get things right because I know what it’s like to have staff get things wrong all the time. Also since I’m a recipient of intimate care, I know how to do it without imposing my emotions on the other person in an uncomfortable way. If I only had the stamina, and could cook and do a few other things like that (yay, uneven skills :-/ ), being a caregiver wouldn’t be a bad job. Unfortunately I’ve only ever been able to do pieces of it, and not every day, but things like that are why I can’t do any job, even in areas my skills are more consistent.
Of course a genuinely good society would value the skills I have, and not pressure me to have ones I don’t, or to have them 100%, all the time. But I live in a pretty bad society to be disabled (and lots of other things) in. Where people’s worth is measured by contribution and contribution is measured by money. Which is terrible and wrong. In a good society whatever any person could contribute would be enough. Oh well. Fuck.
What everyday misuse of power in the DD system can look like.
If I don’t get this written down somewhere I can find it, I’ll forget. And forgetting will be catastrophic. Because I need to do everything I can, to make sure nobody else is subjected to what happened to me Saturday morning.
If you’re not familiar with terminology understand this at least: For developmentally disabled people, staff are not people who are beneath us on a hierarchy. They are people with way more power than we ever have. And when they are bad, as this one is, they can be really scary because they are in control of vital parts of our lives, demand to be in authority at all times, and can make decisions about our lives that outright endanger us. And usually be treated like they’re right and we are wrong or even misbehaving when we object. So onward with that understanding.
Right now there’s nobody to fill that shift so the agency sends subs. They usually range from ehhhhh to very competent. This person fell off the bottom of the range and kept falling for awhile until she reached very bad.
And it wasn’t just her technical competence. It was her ethics. Those were terrible. Not that she set out to harm me. But she set out to establish and maintain control. Very old school developmental disability staff. Could have worked in an institution and changed little. And the results were pretty bad.
It all started when she told me she’s not trained to dispense meds (I’m not surprised, when she thought Ensure was laxative) and that someone else was coming to do it. In itself, not bad. She only notified me, however, when they were an hour late. So I got her to call them. But then she started giving them inaccurate information.
Normally, I can’t speak. So I communicate on a keyboard (currently I mostly use an iPod touch or an iPad running Proloquo2Go). And I use some amount of grunting and gestures, especially in situations where typing is too slow.
When she started giving them inaccurate information, I did what I always do for telephone problems: I started typing while simultaneously making “calling” noises. Hard to explain. But they have an intonation easily read as “Hey I’m trying to get your attention here” that when combined with pointing at an iPad clearly means “Can you look at what I’m trying to say, it’s important, important enough to interrupt a phone call, hell, it probably has to do with the phone call”. The more she ignored me (which she immediately did), the more urgent I sounded.
Until she told them “She’s sitting here yelling at me, don’t know why” and continued her conversation. Her tone and words established to the person on the phone that I’m just one more DD person with bad behavior that is exasperating to deal with, and I heard the person on the phone respond sympathetically — to her. I wasn’t actually yelling but that didn’t matter because her word against mine, and to her I was annoying and might as well have been yelling.
So I finally had to stick what I was writing in front of her face so she’d see that it was relevant information. Remember I can’t just up and say “It’s important to the phone call!” The way most people can. I can only use what I’ve got. This escapes her. She does her best to turn her head away from my writing. Even as I’m frantically miming for her to tell the person on the phone everything I’ve written.
She doesn’t of course. Not yet. She just eventually looks at it and then acts like she’s done. Like it doesn’t contain vital information about the subject of the phone call. She tries to ignore me and does that “I’m making an important phone call on your behalf, you stay out of it” thing.
Finally somehow I got her to read the person on the phone what I wrote. Which does of course turn out to be important — the information is that my meds are time sensitive and I can’t eat until I take them.
So then they get into a conversation with each other — again, not with me. This time it’s about how I can take my meds all by myself if I really need to. Which is completely untrue: My movement disorder makes it far too hard for me to do it without at least some help. It’s actually very complicated and every single separate piece of it is impossible enough without combining it together and making it harder. I can’t even physically do the part with the mortar and pestle. It’s all way too complicated for me, that’s written in my file, and these two women who don’t even know me want me to spontaneously develop an ability I’ve never been able to develop, because it’s convenient to them and that’s all they care about.
So I keep of course trying to tell them it’s impossible. On such short notice, all I can manage is a frantic “uh-uh”. She keeps talking as if I haven’t said anything at all. I don’t remember how I convinced them it was important for them to send a med-trained person anyway, but I did.
(Why would there be any need for them to be med-trained if I had overnight developed the capacity to do it myself? It makes no sense. Other than that if it’s inconvenient for them, whole worlds can change to make it convenient, and my fault for not suddenly displaying this new ability I’ve never had.)
So some guy is set to come in 20 minutes. By which time it’ll be time for even more meds. Whatever. Fine. He’s coming. That’s more than I expected from someone who was more interested in establishing her control over me than ensuring I got important medications on time.
And more control stuff followed. She decided what I’d be interested in. Because she saw a kindle on my bed. A regular kindle. She decided she had the exact same kindle even though hers was a Kindle Fire and I had an e-ink display. Not the same, not even close. So she starts sticking it near my face and showing me pictures of animals endlessly. I only know they’re animals because she says so. My glasses are off. But she decides that I very much enjoy staring at fuzzy blobs I can’t make out, and registers neither my disinterest nor my glasses. I’m completely exhausted and staff are usually informed not to make extra conversation with me unless I want it, because I’m often in pain and need to rest. But she decides what I want to do and she thinks that’s okay. I’ve had so much training to be a passive client that I don’t even consider resisting. Later a friend told me that even this and other seemingly innocent things were controlling behavior on her part. I miss that because I’m so used to it.
So the guy comes to do my meds. He’s familiar to me and I start typing out instructions. Except she gets there first and does the same as before — rushes off to have a conversation with him, without involving me, and does her best to ignore my existence or treat it like inappropriate behavior.
For a person who isn’t med trained, she claims to know an awful lot about my meds. I have three bottles that sit by my bed. They’re for 9 pm, 12 midnight, and 6 am. At 9, it’s too complicated for me to do on my own but they’re kept there so the guy who comes by can do them easily. Then the other two are very simple. Simple enough for me to be able to get them, provided someone calls me and verbally prompts me through it. And someone can come help me if it is too hard some nights. So that’s what those are for — any meds that either always or sometimes occur outside the main staff shifts.
But this woman, with no med training or any other reason to know the intricacies of my med regime, decides she knows all about what the bottles are for. The one marked 9 pm must actually, magically, mean it’s intended for 9 am. And it must be by my bed because I can somehow take them by myself, after all, no matter what I or my instructions or my case manager have to say about the matter.
For reference: My morning meds are complicated. Some of them have to be crushed or dismantled and mixed in pudding. Some of them are liquid and have to be drawn in oral syringes. Some of them I can chew up. Some of them have to be snipped open and squeezed into an indentation on pudding in a spoon. In between most of the parts I have to drink Gatorade. The pudding has to be kept to the minimum amount so my stomach can handle it. And none of this is simple or easy or safe or possible for me to do on my own. All I can do is take the various things when handed to me and then eat or drink them.
So what does she do? She picks up the 9 pm bottle, shakes it a bunch of times, says to the guy “Here’s her nine am meds. But I don’t understand. It’s empty. If it were full, she could do it on her own. But nobody filled it.” And runs around looking for the nonexistent meds to fill the bottle that isn’t what she thinks it is, so that I can just take my meds myself, or something like that.
My meds are in a really prominent location that you can’t miss and this guy knows about. But under her guidance, they are looking under boxes and all these weird places. Finally, after a ton of searching. And me hearing her filling his ears with the biggest load of nonsense about my meds that she could possibly think up, going back again and again to “Why isn’t the 9 am bottle filled, I don’t understand it!” and ignoring every sound I make. Finally they ask me where the meds are and where the instructions are. I tell them. I hear the guy finally getting to work.
Now the woman continues to tell me that “there’s some water somewhere that I need to change”. She’s been telling me this all day. All day I’ve been telling her to forget it. It’s my bipap water and I don’t have the brain left to explain how to prevent it leaking. I can deal with day old water better than a leak. She keeps ignoring me and trying to get me to tell her how to do it.
Oh and while she was on the phone earlier. She’d done something I’ve seen before but is too subtle to prove. My 9 am meds are marked some places as 9:30 meds. It depends on different shifts different days. And I heard her using the discrepancy between what I said and what was on paper to prove to the woman on the other end of the phone that I wasn’t just bad for yelling to her, I was also bad for saying 9 when some piece of paper said 9:30. Staff do that to keep their authority and undermine our credibility but it’s too subtle to prove, meaning it works very well for them.
Another thing she kept saying the whole time, was that someone else would come at the end of her shift. This puzzled me because nobody does. But she kept saying it. If believed, it would have made it impossible for me to get some other meds. It turned out in the end that she’d been reading a chart I have for bowel tracking and deciding that if one time segment ended when her shift ended, then the fact that time went on afterwards meant there was another staff shift there. Rather than that, bowel movements can happen any time of day, so the chart has to cover all times of day. It was as if she was so unwilling to see me as an authority on my own life that she had to puzzle everything out from clues that weren’t even clues, rather than ask me. I had to tell her five times she was wrong before she’d even tell me where she got this bizarre belief, let alone listen to my explanations. Because she had to be the one in charge, in control, and in the know, no matter what I said or did.
So anyway the guy gets both my 9 am meds and my 11/11:30/12 meds (can be any of those times depending on the shift) at the same time. Which is kind of bad, but at least he got there. He’d have done it faster if she wasn’t interfering and trying to get him to ignore me.
After he left she asked me for the fourth time about the water, and I told her for the fourth time not to do it. I finally told her that the instructions don’t cover important safety information. That only I have this information. And that I was having a hard time explaining it so it would be easier to wait for tomorrow.
And then I explained that explaining things is really hard for me ever since I spent 5 weeks delirious in the hospital a few months ago, that it’s been hard to do everything including explain things.
And then her whole manner changed. She suddenly thought it was okay I didn’t explain the water. But somehow I knew it was more than that. In her eyes, I should have been capable of all kinds of things I wasn’t doing. And so when I couldn’t do them, she was blaming me. But now that she had what she thought of as a justified explanation, now it was okay for me not to be able to do… the same things I couldn’t do before I got in the hospital.
Which actually made me mad. Her instructions told her what I needed done for me. That wasn’t enough. She treated me like she was in control, in command, and in authority. And if we have even met before, it was very rarely. She has no claim to those rights. But I could tell — I’ve met people like her before. Not in awhile but I’ve met them. And to them, DD people are always wrong and if we contradict them it’s because we are either wrong or trying to get away with something. And to them we are lazy and therefore say we can’t do things we can, and need to be ignored and forced into doing those things. And even the most incompetent staff have more authority than we do.
Oh and? She never fed me. I got the meds guy to do that. It was easier than explaining to her that Ensure not only isn’t laxative, but is the only way I get any nutrition to speak of since going off solid food. But she never even asked about food. Which was bizarre.
She also kept asking me periodically if I should go to the bathroom. Asking is a weird word for it. It was asking sort of but in a really intense way that reached “demanding” fast.
I’m lucky that my current case manager works hard to find me staff who understand me and treat me right. But for the majority of DD adults in the system, including me in the past, this is what happens every day pretty much. We are surrounded by staff who treat us like they are adults and we are children, only worse, we are defective children who can’t be trusted with power or authority or truthfulness about our own lives. This woman doesn’t even know me and she was absolutely certain she knew all kinds of things about me that contradicted everything I said and everything my case manager sets out in the instruction sheets. She could just make wild guesses and be taken more seriously than anything I said about my own body. The only way she finally believed me was when she heard I’d been in the hospital. But I had trouble with all this before I went in the hospital. She shouldn’t have needed me to have an “excuse” for difficulties I’ve had for years, in some cases forever.
She shouldn’t have been trying to rearrange my abilities in the first place the moment they became inconvenient to her. But she did. Because that’s what people like her do. Imagine you can’t drive, don’t even have a car, and someone tells you “drive me to the store because its inconvenient for me to catch the bus”, and every time you say you can’t drive they act like you’re making it up to be difficult. When they actually made up your ability to drive. It’s exactly like that. Except that they can get sympathy <em>everywhere</em> for dealing with a “difficult client” if you object. Whereas if you tell your story people will tend to identify with staff no matter how outrageous their behavior is.
So yeah. That was my Saturday morning. It threw off my entire day and I still feel like crap.
And for reference. Subs are normally exhausting. But they are not normally like this at all. They usually follow instructions on the papers my case manager gives them. If something’s different, they listen to me. The very occasional one won’t believe me and tries to call people who don’t even know the information to verify whether I’m right. Which is not good, but not anywhere close to as bad as this. What made this woman stand out was that she insisted on keeping all the authority on my life to herself and other staff, while giving me close to none and even that little bit grudgingly. Which included taking ordinary behavior on my part and making it sound like misbehavior. And also included ignoring a good deal of my communication and pretending I wasn’t saying anything at all, and trying to get everyone else to listen to her and not me. All on her first day working for me, because in the minds of people like her <em>simply being staff</em> gives them authority over people they’ve never met. Well, in the minds of people like her, DD people aren’t actually people. We may have human bodies but something important is missing in our minds, therefore their authority over us is justified.
Writing this by the way has given me a nasty headache and worn me out badly. But I had to somehow write it all so I don’t forget. I forget things too easily lately and I can’t afford to forget this before I manage to tell anyone who can at minimum keep this woman away from me. But it’s her other clients I’m worried about. She was too practiced at manipulation for it to be anything but second nature to her, she clearly pulls this crap on people every day. And especially for people with communication problems, she scares me.
II. As I move through my life — a disabled person — two companions haunt me. They are imaginary, but in my dealings with other people, they are forceful. Sometimes other people cannot seem to sense me behind those phantoms. Sometimes I am forced into their masks, and falling out of character has consequences.
One I think of as an uncle. A descendant of Carrie Buck, of the Jukes and the Kallikaks, a cousin to the Rain Man and the wild children of the forests. You’ve seen him rocking in the corner, headbanging. He cannot speak and, people assume, has nothing to say. Sometimes he is a cute, incomprehensible child; sometimes a terrifying, incomprehensible adult. He is usually uncomprehending but sometimes manipulative; usually repellent but sometimes seductive. Violence swirls around him: sometimes he is a target, sometimes a perpetrator, sometimes both. He is an enigma, interpreted by others: he cannot define himself. He embodies the stereotypes, the paradigms of cognitive impairment, of my own particular set of labels. He’s no different from me — but he is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no resemblance. Bruce, I call him in intimate moments, after a caricature I once saw on television.
The other I think of as a sister. A shadow twin. The daughter my parents wanted in my place, pretended they had. The sister my flesh-and-blood sister wished for. Me, but with impairment denied, defused, removed. Me, but with grace, stamina, social skills. She speaks for herself — then again, she doesn’t have to. She’s no different from me — but she is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no hint of resemblance. Mary, I call her, after the aunt whose other name I was given.
"Oh you’re getting migraines? I’ll shut up. My husband gets migraines and I know you can get sensitive to sound."
[Chats ceaselessly and pointlessly about anything and everything for 20 minutes of bed bath.]
Seriously even when my migraines aren’t that bad I often end up with one before this particular woman leaves.
OMG OMG OMFG
THIS IS WHERE ALL MY BOOKS HAVE BEEN VANISHING TO.
Someone has been periodically sticking them in a crate of papers at the back of my closet.
And I’m talking books I need to make frequent reference to. Books I presumed totally lost. Books I only haven’t reordered because they all happen to be ones that you have to use a telephone to order.
This is… everything I don’t even know how to say about certain kinds of caregivers. And I’m talking books. In a box of papers. Why on earth would I look in a box of papers for books?!?!? And why did nobody tell me where they were when I said over and over for years that they were. Issuing.
Well today’s sub is better than yesterday’s.
All she does is sigh and roll her eyes every time she does… like, anything. And I’m even talking routine stuff from her worksheet thing, not stuff that involves interacting with me in any way.
But at least today I’m not in any actual danger. And I know from talking to my case manager in the past that pretty much everyone complains about this person being unprofessional. And honestly after yesterday this doesn’t even feel bad, I’m just relieved not to be having to fight for anything or explain anything.
You know it’s a bad sign when…
…a substitute staff person walks in the door and your hungry cat hisses at him and runs away.
And this shift has been a disaster. Getting breakfast. May throw it up because he refuses to help with nausea meds. Two hours late on seizure meds because he refuses to help with those.
Breakfast is late because of the frantic phone calls he makes when asked to do simple things — but he dumped the remains of my Maalox into my Gatorade, instead of laxative, because he did not bother to ask about that. My debit card is canceled so I can’t get more Maalox easily.
And I may not get lunch because it took him most of the hour to make oatmeal. And it was supposed to be breakfast at one end of the hour, lunch at another.
Whether and when I will get seizure and nausea meds is apparently Not His Problem.
Fey was right. I feel like hissing at him too.