Blogging against disablism day
So I thought I should say something for this. I mean, I didn't sign up for the event, and my journal is now friends-only, and it's not like I don't mutter in here about what I always call "ablism" instead of "disablism" all the time anyway.
But I really should say something.
Today was an interesting day from a disability perspective. It was a pretty ordinary day. I started in the nursery, with two residents I'd only met once before, an attending I barely know, and these adorable healthy babies. And it was a reasonably lousy day. I spent about 15 minutes this AM actually examining a baby, perhaps another 30 talking to the mom of that baby or watching doctors talk to mothers of other babies, and spent the rest of the time having vaguely baby-related conversations with the doctors, or simply doing nothing. And they won't encode my keycard so I have to get let onto and off both the nursery floor and the pediatric floor, where I went for lunch because they won't let me eat on the nursery floor. And when I asked about delivery room experience, which is on my instruction sheet, they looked at me like I'd sprouted a third head. And when I asked about my visit to the ICN (what people in the rest of the world call a NICU) I was told it would be Friday morning as it is every week, never mind the fact our exam is Friday morning, and in fact, is Friday morning every sixth week. I guess no one on Nursery the last week ever asked about that before. A fourth head began to sprout out of my cane.
And it wasn't a great disability day, although I freely admit much of that is my fault. Whose idea was it to overdo it all day yesterday climbing stairs? Any takers? Right. So I was stiff and sore and not moving very well. And I can't reach the floor on many of the chairs.
It wasn't that bad an ablism day, though. No one asked me to do anything I couldn't do, and they accepted it pretty well when I told them what I couldn't do before they asked me to do it. No one made any comments to the effect of "your kind not belonging here," or made negative comments about the lives of people with disabilities or illnesses.
Of course, it may be part of the lack of negative comments about my ability to be here may stem from the continued, persistent belief that there is nothing I can't do, stated by people who have actually no idea what I can do or not. I am glad you don't have to be very strong to do a spinal tap, I really am, because that means I might actually be able to do one. And I hope I can, because it will make my future career plans a lot more possible, and I believe I probably can. But that doesn't change the fact that there are actual, legitimate problems with my hands, involving strength and other things, that you don't really know about. And telling me that I can do something, without knowing all the issues, does not make me feel better, nor does it make it more likely that I can do whatever it is. All it does is tell me you don't believe me I have legitimate concerns. And it's tiresome. And. . . it's ablism.
I had awful flashes of jealously today. I don't like to talk about it too much, even to myself. I should be comfortable with myself. Most of the time I am comfortable with myself. And I try to live up to my idea of Disability Pride. And most of the time I think I'm succeeding. And then I get jealous. Ridiculously jealous. Over something truly silly. Here it comes:
When you examine a newborn, one thing you do is pick up the baby and sort of drape her or him over your one hand while you do things with your free hand to check muscle tone and reflexes. At least, you do that if you aren't me. I watched the doctor do this today, and then I asked him how much that baby weighed, and then I had to tell him there is no way on earth I could safely hold an 8 pound baby in one hand like that. We figured out other ways I could probably test the same stuff, but he looked pretty taken aback. As was I. Hadn't I asked five or six different people if I was going to need to lift the babies in the nursery, and hadn't all five or six of them assured me that I could just wheel them around in their little wheeled bassinets? I suppose they meant "lift up and carry," which I suppose I also meant, since no one had told me I was generally expected to singlehandedly - literally - suspend a baby up in space. . .
But anyway, there's ways around it, now that I start to think about it. And so I should be able to get through a pediatric residency OK. I mean, this isn't going to be the defining point. And I see people doing things I can't do all the time. Handwriting notes. Running up stairs. Wearing high heels. Talking about the fabulous new high heels they just bought. But today to the extent that I had patient contact, it was people lifting babies up, and realistically a reasonable proportion of my residency is going to be spent with babies. I'm going to be seeing a lot of this. And so I'd better just get over it.
From being irrationally jealous of my colleagues, of course, I swing over to identifying with my patients, real and hypothetical. Any conversation about newborns always ends up talking about jaundice and bilirubin sooner or later, probably because none of us really understand it and it involves lots of numbers. And the reason you treat jaundice in newborns isn't that turning yellow is bad, per se, but that it causes a buildup of bilirubin in the brain, which in turn causes something called kernicterus. And kernicterus, as I couldn't resist pointing out, turns babies into me. Blank stares. I retreated. Well it causes choreoathetosis. Which is why athetoid CP used to be a more common form, but now that we have effective treatments for neonatal jaundice, spastic CP which is more likely to occur in preemies is overwhelmingly the most common form. Blank look and a request for me to say that again. I said it again.
I was a preemie, and now I'd really like to know what my bilirubin level was. But it doesn't really matter. I ID with NICU babies and NICU graduates who we call "special babies" but I've taken to calling "special big kids." And I ID with people with movement disorders from whatever cause. Some of them turn into me. Some of them turn into my future patients. And. . . I guess that's my Disability Pride showing.
P.S. I just got a phone call from a telemarketer asking me to contribute to a children's day for "handicapped and disadvantaged children." I told him I "worked with handicapped and disadvantaged children already." I wonder what he would have said if I had also mentioned I was a former handicapped child myself. Or if anyone ever did tell him that.
P.P.S. LJ spellcheck has heard of neither "ablism" or "disablism." Too bad for it.