as small as a world and as large as alone, dendriforming: There’s a post going around right...

3:05pm August 29, 2014

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 don’t.

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.

Good gods.

I just… can’t.