A second post for Blogging Against Disablism Day, even if it’s late by now. (I think they said late posts were okay, and I really haven’t been up to making all the posts I intended to make yesterday.)
Years ago I lived in an apartment that had formerly been occupied by a nurse. I still got some of her nursing magazines in the mail, which I usually threw out. But one of them had a front-page article on spotting manipulative patients, and I stopped and read it.
In this article, I did not learn a whole lot about manipulation. I did learn that some healthcare professionals are systematically trained to view ordinary human behavior as attempts to manipulate them. (I think this says a lot about the egos of the healthcare professionals who come up with this stuff, personally. They think their patients’ every action is about them.) I learned in particular that the following are all, in the eyes of some people, manipulative:
- Telling professionals they’re not giving you their medication on time.
- Complimenting professionals.
- Saying professionals have done or are doing something wrong, either to their faces or to other professionals. Trying to get genuine help from some professionals when being wronged by others.
- Talking to professionals as if you’re their equals.
- Trying to do little things outside of imposed routines to get a sense that you have some degree of autonomy.
They worded it differently, but those are the sorts of situations they were describing.
It is very little wonder then, that during my last emergency room visit, a nurse referred to me as manipulative. She later apologized. But at the time, that’s what she called me. I tried to find out what I was doing that was so manipulative, since I’m not very capable of manipulation and get really frustrated when something I’m doing is construed this way. It turned out, in this instance, that continuing to repeat that I didn’t feel well was the manipulative thing.
I’d gone in because I was breathing really shallowly and clearly headed for bad territory, I couldn’t even sit up. Everyone around me agreed I belonged in there, one doctor even talked about getting me admitted to the hospital so that I could deal with specialists instead of harried emergency room doctors. A 911 call was made. They took me to the hospital. Etc. Etc. Etc.
The doctor there was what one staff person described succinctly and immediately as a jerk. He did not treat me like a human being, he treated me like a lump of flesh that happened to be attached to some interesting numbers he wanted to change. He was annoyed by the fact that I had things to report about what was bothering me that had nothing to do with his esteemed numbers. He ordered a bunch of tests without telling me what he was doing to me, including some that were fairly invasive. He never told me the results, either. I was clearly supposed to lie there like a block of wood and not tell him much of anything about what was going on for me subjectively. His plan was to continue throwing bronchodilators at me until I either got better or they couldn’t give me any more. He made it very clear to me that all his decisions were final, that I was to obey him, and that I had “very little” (he said this with amusement) say in what happened to me.
They kept taking peak flow readings off of me. Generally, I get a much higher one right after a breathing treatment, then it goes down a bit, sometimes a lot. Generally, when I am being treated by someone who truly wishes to monitor me for my health — in fact every other time I’ve been treated for an asthma exacerbation — they wait around for awhile and make sure that I’m stable. Not this guy. He got me up to ten points above my red zone (the color-coded danger zone that you’re supposed to always see a doctor immediately about) immediately after a treatment, and declared me better and stable and ready to go home.
Well… not exactly. My lungs were definitely more opened up, and that was a good thing. But they hurt even more than they had when I’d gotten there. My oxygen level was lower than it had been when the paramedics had been called. I was still extremely lethargic. And I felt like there was a cat sitting on my chest: I was still expending a lot of effort to breathe. I could clearly breathe more air, but it was still taking a lot of effort not to breathe super-shallowly. (Which is non-trivial. One of the real problems with asthma is not just how much air a person can force themselves to pump, but how much exertion it takes to pump it, and therefore what happens to their breathing when they wear out.) And my peak flow was back in the red zone again. In other words, had I been outside of the emergency room, and called a doctor at that point, they’d have told me to go back to the emergency room.
He refused to listen to a word of this. He refused to even look at the peak flow meter showing the number in the red zone, instead preferring to report my previous numbers that were in the yellow zone as my official peak flow. He insisted that nothing I was describing could possibly be happening because my numbers were “so good”. (Ten points above red sustained for all of five minutes isn’t “so good” by just about any definition.) He seemed bothered, even, by the fact that my pulse was now so high from the bronchodilators that there was no way I could take any more of them.
After he hung up on a friend of mine who tried to explain what was happening, and stormed out of the room, my staff went to ask him about a second opinion. He said there was no such thing as a second opinion in the emergency room (untrue, I’ve gotten them there before, easily, from doctors who were less egocentric and more aware of their limitations in certain areas, as well as more aware of patients’ rights). He said that my x-rays were normal and I could go home. (I had not had any x-rays that day. My previous x-rays from the day before had shown a portion of my lung was either collapsed or infected, probably collapsed. He had told me this himself, as had the doctor I’d seen the day before, as later did my pulmonologist, who added that it was almost definitely collapse and not infection.)
He and all the other staff on that shift seemed bothered that I did not feel all that much better. The nurse who was handling my discharge papers seemed to be acting like the doctor. She refused to read off my screen, she told me conversation was pointless and she didn’t have to listen to me, and she talked louder and louder while I tried to type things (and did so when my hand was immobilized by her so I could not reply). She eventually accused me of being manipulative. (She did later apologize for this, and we settled that on a personal level, but I still find the accusation significant.)
I find accusations of that nature frustrating because I don’t really know how to manipulate people in situations like that (if I did I’d manipulate things so that I didn’t get the degree of nastiness some professionals seem to like bestowing on me). And then I have to find out exactly what I’m doing that someone else is seeing as manipulative. She finally told me that the reason I was “manipulative” was because I seemed to want to be admitted when the doctor thought I should be discharged, and because I kept saying that I wasn’t feeling much better. (Well, I wasn’t, and in many ways I felt worse.)
In reality, I just didn’t want to be sent home before I was actually doing well enough to technically be sent home. The discharge papers she had in her hands told me to come back if I was experiencing several things that I was right then experiencing. I did not want to leave and have to come back in a few hours, and I also really wanted to be able to see people who worked in the field of asthma (including one who’d told me he could treat me, but only if I came in through the ER because of hospital rules on how admitting worked) rather than harried generalists who mostly dealt with things like broken legs, and especially rather than a Shift From Hell. I don’t enjoy bouncing back and forth between home and the emergency room, I would rather stay a bit longer and get things really fixed, and then go home and not have to deal with medical professionals at all.
This all by the way was in sharp contrast to the day before. The day before, there had been some concern over whether I was being treated respectfully, but that had been taken care of. The doctor the prior day had not been the most amazing doctor in the world or anything, but he’d listened to what I said about what I was experiencing instead of seeing me as a series of numbers on machines. When they got me stabilized, they waited until I was actually stable — with a peak flow high into the yellow zone with no danger of falling into the red zone at the drop of a hat, and without the feel that I was working really hard to breathe — before discharging me, and they talked to me about how I was feeling to make sure it wasn’t a case of the numbers being deceiving. By the time I left, I was no longer lethargic, I was sitting up a little bit off of the bed, and I was back to my usual fairly fidgety self (when I’d come in I’d been too limp to keep my arms on the stretcher). I was quite happy to leave, both because I hate emergency rooms and because I was genuinely feeling a lot better. Not feeling good — I was still really sick and couldn’t move around a whole lot — but feeling better and as if I was continuing to improve, and not in any immediate danger. I know my body — at least my lungs by now — and I can feel the difference.
Anyway, I was later talking to a friend about the woman who called me manipulative. My friend told me that the woman was saying the word manipulative, but meaning the word “impertinent”: I didn’t know my place. I was telling a doctor he was wrong about how my body felt. I was trying to actually get treated enough to be genuinely stabilized, when they just wanted me out from the moment I got there. My body itself was impertinent enough not to fit into their plans for me, not to be magically fixed after the holy invocation of levalbuterol, and I was impertinent enough to be a real person and not the mannequin I was being treated as.
Not that this entirely surprises me. I have a friend who was ordered out of the same emergency room at gunpoint while unable to move her arms and legs and provided with no wheelchair. (They called security because she was “refusing to comply with her discharge” because she couldn’t move.) I talked to a cab driver who was told by the doctors at this hospital that they would not help him prevent any further heart attacks (he’d already had one), and that they’d only treat him if he had another one. When he said “What if the next one is my last?” they said “Then it won’t matter to you, will it?” The cab driver I got on the way home this last time used to work there as a janitor and said a lot of the doctors and nurses were really nasty to people they saw as beneath them, which happened to include both patients and janitors. I’ve heard a lot of horror stories about parts of this hospital (although other parts of it are really good and I’ve had no complaints about those, just as some people and shifts in the emergency room there are decent).
I talked to my pulmonologist about the whole thing and he said that they get frustrated when they can’t fix people and take it out on the people who aren’t being fixed.
What’s really hard to determine in these situations is when and to what degree there’s discrimination going on and to what degree it’s just people who are having a bad day or mean to everyone in general. And when it’s discrimination, what kind? I’m a woman, I’m cognitively disabled (and come with an entourage from the agency for developmental disabilities), I have a psych record, I’m physically disabled, I wear tinted glasses indoors, I’m fat, and I’m poor (translation: entirely on federal and state assistance for medical insurance). I’m never sure which one of these things, if any, medical professionals are reacting to when they treat me as “less than” other people dealing with identical medical complaints.
And unless I see how others are treated, I don’t always notice how the way I’m treated differs. I recently had a particular urgent medical treatment bumped up sooner not because I was in agony or infected (and I was both), but because I let them know I needed to be at a fairly prestigious university consulting with them on something by a certain date. They were otherwise going to wait a length of time that would be unacceptable for a non-disabled patient with the same problem (I would still, today, be waiting, for a problem that was generating pain almost as high as you can go on the pain scale). When I was a teenager, my parents were told explicitly that people like me didn’t need dental care, because we had no use for nice-looking teeth (my parents blew a gasket and got me a new dentist). But most of the time things are more subtle than that. A more recent dentist denied to me that obvious jaw problems were rooted in any kind of mechanical problem (the jaw specialist barely had to look to figure out that wasn’t true), said that I probably just moved it around too much on my own, and tried to tell me that an infected tooth was probably just red from me touching it, and that the searing pain down the nerve that it was tangled in was probably from me touching my face too much. (He had no basis for thinking I was running around touching my face. And I have experimented since I got the tooth out, and I can hit my face and be unable to replicate that nerve pain even if I hit it in the exact spot the nerve is closest to the surface.) I learned later that a dentist at the same practice had angrily and violently cranked open the mouth of an autistic girl who was too slow in obeying him (her mother had taken her home immediately on seeing this). This was a place that gave good dental care to people who were non-disabled.
But it’s hard to work out what’s going on, when I’m in the middle of it. I have only had a short time in childhood to remember being treated as somewhat normal, and even then I was treated like a child because I was a child. I’m never clear on how adults are treated by doctors in general. I am stunned when I find out that adults with near-identical medical issues but who don’t look developmentally disabled are actually treated with respect. I am even more stunned and awed when I am treated with respect. I tend to experience what other people would consider normal medical care as an amazing miracle, which I shouldn’t, but it’s hard not to fall into that trap when you’ve had your bar set way too low way too long. When I go to a medical professional who treats me the same as any other patient, I feel like an interloper in a world I’m not technically allowed into, and wonder when they’ll discover I’m not allowed and throw me back.
As a result, I often delay or fail to push for treatments most people would get. I’ve only recently been pushed hard enough by friends to try to start averting crises before they turn into full-blown crises, which I’m told is how most other people do it. I’m sometimes more afraid of medical professionals than I am afraid of death.
These things aren’t unique to me. I know a guy who walked for years on a dislocated leg that nobody treated because he was developmentally disabled. I have known several people that doctors refused to treat at all for life-threatening conditions until someone else screamed at them loud enough. (Most of whom are still alive.) I’ve seen medical professionals justify the deaths of people around me as being better than their lives. I’ve even had one former professional confide in me that he used to work in institutions for people like me, and that he used to stand over people’s beds agonizing out loud about why they were alive at all. (He seemed to think I would feel sorry for him on this account, instead he scared the crap out of me.) I’ve heard (and experienced) story after story of people with developmental disabilities and people in the psych system in particular (not to mention those of us who are both) being considered manipulative, or task-avoidant, or behavior disordered, or some other such term, when still trying to function with levels of pain that would put most of our so-called able-bodied caretakers in bed. Because our role is to be in certain places at certain times for certain people, and anything, even pain or illness, that gets in the way of that, is judged manipulation and attempts to get out of what we should be doing, by default.
It’s not the entire medical profession that’s like this, but it definitely seems like if you’re disabled — and some kinds of disabled more than others — you simply don’t get proper medical care. Few people actually say outright that’s what’s going on, but the pattern exists, and it can’t be denied the more you look at it.
Our bodies will continue to be impertinent enough to exist as they are and not as someone else fantasizes them to be. And unless something changes, the default judgment of our reactions to our bodies as they are will to be considered manipulative, or behavior problems, or anything other than what it would be in any other person experiencing the exact same thing. And our impertinence and the impertinence of those around us — otherwise known as advocacy — might be the only thing that allows us to survive in the meantime, whether we get called names for it or not.
