9:51am October 18, 2013

➸ Disability Thinking: Followup: From An Old Familiar Place

I thought of a couple of things late last night, after I reblogged and commented on that account of how a young woman with Cerebral Palsy was treated by an ER nurse.

The story made me instantly angry in a way that very few things do. I shared it because of that, and because I think it’s…

I am disabled in many ways (cognitively and physically) and have enough health issues that I come into regular contact with the medical profession. Sometimes they say things like that to me or my companions outright, but more often they hide their views and say them only to each other.

My friend worked for a group home for awhile and in front of clients and family members they’d be all politeness but at staff meeting they called them retards, and held undisguised contempt for the very idea that they were real human beings.

I’ve found that if someone is open in front of me about not seeing me as human, that’s a very bad sign because it means they don’t even see me as human enough to bother hiding it.

Like the time I saw two medical professionals talking IN FRONT OF ME to tell each other I had the cognitive functioning of an infant. They sounded indignant at the very idea of taking care of me. That sort of thing often happens when I’m too sick to communicate.

And I’ve had a lot of hospital experiences where my existence in the hospital is seen as an intrusion on the ordinary running of that place for real people. I have lost count. In one such instance my friend/DPA couldn’t visit due to her own disability that day, so she sent her staff person. She discovered that I was overflow on a cardiac ward where they liked things quiet and orderly, and my uncontrollable vomiting meant that they had evacuated my roommate, shut the door on me so nobody had to hear it, and ignored my call bell completely. She knew, because I told her, that the nurses had been informed that I had a neuromuscular condition that meant such intense vomiting was making my muscles weaker every time it happened. And that this was putting me at risk for complete collapse and aspiration, that I needed help to keep from just vomiting straight onto myself, etc. But their response was to pretend I didn’t exist. And this staff person was a cancer survivor and had a lot of experience (herself and with her disabled clients) with the underbelly of our hospital system so she didn’t take crap from anyone.

She apparently, I was told later (I was fighting delirium at the time, using most of my energy to concentrate on positioning myself at the least level of choking risk) came in and found they’d shut the door and were deliberately ignoring my call light.

So she’d just start throwing the door open. And they’d shut it. And she’d open it. And they’d shut it. And after this happened a bunch of times without my awareness – this is the only part I do remember clearly – she threw my door open as hard as she could and hollered at the top of her lungs, “IF YOU LET HER DIE IN THERE I’LL HAVE EVERY ATTORNEY IN BURLINGTON IN THIS PLACE!" She had an argument with them and apparently came in to check on me after that, but I only have the vaguest memories of her being there.

Soon I was transferred to a better ward. Until I had an awful experience there with an LNA who believed in pushing sick people past our limits (she pushed my roommate to the point of tears, I refused to allow her to push me and she became physically abusive, scrubbing me so hard it hurt when I refused to walk to the shower because I’m a fall risk and was very weak… I told her she was hurting me and she smiled and said thanks for the feedback and began hurting me even worse), I got transferred again, away from her. Apparently my DPA had to resort to telling them I was a high profile person in the disability rights world and that the community would be very interested to learn how I was being treated in there.

But people like my roommate, who had myasthenia gravis (in the same family of neuromuscular diseases as mine), cognitive disabilities, and no advocates or connections, couldn’t escape that treatment. According to an LNA I know who has friends who work at the hospital, the hospital has a culture among LNAs and nurses that patients are just trying to get away with being lazy or even outright lying about difficulties, because they like being taken care of, so we have to be constantly pushed past or limits or we will stay there forever. They must think very highly of themselves that they imagine we enjoy them taking care of us. But that explains the time I was so weak I shit the bed, and instead of being cause for worry about my illness, it was cause for alarm that if I was allowed to "get away with that” I might get used to it and never use a toilet again. Who comes up with the idea that patients are so lazy we would even shit the bed to avoid using a bedside commode? And who would shit the bed if they had ANY other choice? I was so weak that even rolling for the bed pan was a huge ordeal.

But in all my awful hospital experiences, with rare exceptions, there was a common denominator that I was not a real human. Sometimes they said it outright, or in terms of “cognitive function of an infant” or whatever. But most times it was just heavily implied.

And I’ve had really weird interactions too. Like this one doctor. I was very cognitively impaired after anesthesia so I was having trouble even understanding what he was saying. Like I heard the words but I couldn’t put together the meaning. I was asking a very simple question though.

And all of a sudden he was getting in my face and yelled “YOU SAY YOU WANT RESPECT WELL YOU HAVE TO SHOW ME RESPECT TOO I’M A HUMAN BEING NOT A MACHINE!" I had never asked for respect. It sounds to me like someone had told him to be more respectful to me and he resented it and took it out on me because I was not human enough to deserve his respect. The thing about not being a machine reflects a common prejudice that autistic people’s interaction style means we treat others "like furniture”. In reality I was just asking questions and struggling to understand the answers. There was not even a hint of disrespect involved. But he resented being asked to respect an unperson. So he took out his anger on me for any action, such as not making eye contact, that he could twist into a show of disrespect. The only way I was remotely disrespectful was I did not show him DEFERENCE that some doctors think they deserve from patients. I talked to him like I talk to anyone else. That’s because my brain refuses to compute or respond to social hierarchies. So this unperson is lying there in front of him not making eye contact, treating him like any other person, and being slightly delirious (I had just, just regained the ability to type rather than punch in picture symbols) and confused and not instantly understanding him, and being terrified to death… And apparently that in combination was enough threat to his ego that he had to scream at me. And he got away with it, too, because he was a doctor and I was an unperson who didn’t Know My Place, and had the audacity to have cognitive impairments and be scared and frantic because of the confusion.

And people wonder why I don’t go to the ER unless pushed or potentially about to die or something. Because I never know if I’ll get the basic respect avoided to human beings.

That’s the other thing he didn’t get.
I hadn’t actually asked for respect, but if I had, the respect I wanted would be the basic respect people are supposed to give to human beings.

But being one of those particularly arrogant doctors, he saw respect in terms of deference. And I give people real respect but never deference.

So in his eyes it was particularly galling that I was demanding “deference” from him (even though again I never asked for respect), when he was the doctor and I was just an unperson, and I was not giving any deference back. So he was sitting there regretting any effort he was making, which seemed pretty half asked to begin with given that all I picked up on was contempt. And then when I showed no deference to him it showed I was worthy of that contempt.

And he didn’t understand that what we each wanted of each other was not equal. I wanted the basic respect due any human being because without it I could die. He wanted deference because he was better than me by virtue of being both a doctor and a real person, when the only thing at threat was his ego. And he viewed our desires as both identical and equal. And he saw the results of not getting our desires as both identical and equal. When my desire was both asking less of him than he asked of me, and far more important. But again, I never actually even asked him for respect. I assume someone else told him to respect me and he blamed me for it.

Anyway I get the unperson thing all the time. If someone admits it in front of me it just shows I am not even enough person to hide it from.

Notes: