10:03pm September 13, 2014

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.