Nurse: “And how old is she?”
My Friend: “20.”
(Instead of responding to my friend, the nurse looks at me.)
Nurse: “Is that correct?”
Me: “I would assume. She can speak for herself. I’m only here as a friend.”
Nurse. “And for how long have you had these symptoms?”
My Friend: “I noticed them this morning, but they’ve gotten very bad.”
(Again, the nurse looks at me instead of my friend; I say nothing. She continues doing this for several moments, asking questions and then looking at me, until my friend finally snaps.)
My Friend: “You talk to me, not her! She’s my friend; she doesn’t know anything about my medical stuff.”
(The nurse stands up and storms away. I follow, more than a little angry on my friend’s behalf.)
Nurse: *to me* “You may think it’s nice to let her pretend to be a real person, but some of us are trying to run a hospital.”
Me: “Excuse me?! She’s in a wheelchair; she’s not stupid! She IS a real person.”
Nurse: “Well if you want to pretend that’s true, that’s on you.”
(I am struck completely silent in rage and shock. A doctor, who I haven’t seen until he SLAMS paperwork down on the desk, interjects.)
Doctor: “Nurse. Supervisor. Now.”
The above has happened to me countless times since I was paralyzed. Rather than assume competence health care workers in the ER assume incompetence. The only way I would go to an ER is if I am dying--literally critically ill with death a distinct possibility. Pretty much every other paralyzed person I know feels the same way. We avoid the ER because we know our existence is not valued. We are not fully human. It is assumed we have some wort of fatal flaw. I have been disrespected by triage nurse and physicians. I have been disrespected by ancillary staff. I have been disrespected by medical technicians. Virtually every ER I have been to has been hostile to my presence. I do not take others to the ER. If I did they too would be disrespected. What exactly have health care workers done? Here are some examples.
1. My son needed stitches. His hand was wrapped in a bloody hand towel. The triage nurse asks my son who is the patient. She looks to him for the answer. Later an administrator asks me if I have legal documentation to prove I am the father.
2. I cannot a catheter in, a potentially serious problem. I am on a stretcher legs spread and the resident starts to tell me in great detail about exactly why he would rather be dead than suffer a spinal cord injury. He was very clear a spinal cord injury was a fate worse than death.
3. I burned my leg with hot water. It is a serious burn. The physician needs to put a dressing on. Before doing so he grills me about paralysis. The line of questioning is demeaning. I am asked how I get dressed, can I have sex, where do I live, do I have a personal care attendant, can I drive, why am I alone, etc. The line of questioning is morbid and not relevant at all.
People wonder why accessing health care is a problem for people with a disability. I suggest a quick trip to the local ER will provide ample evidence of gross social inequities not to mention a physically inaccessible environment.
My favorite is when I'm screaming in pain while being lectured that "you wouldn't be disabled if you only got weight loss surgery".
I get this in regular doctors offices, too. No, really, Doctor, I'm here for an ear infection. I don't think weight loss is going to help that, nor do I think whether I'm disabled has any effect on my ear canal.
Incidentally, I have been sending corrections, mostly typos and grammar issues, to the Not Always [Whatever] people. They've been updating as I send. This exact NAW post was in my last note to them, for their use of "confined to a wheelchair". My message says, "Whether the original poster wrote it this way, this is language that is demeaning to the disabled. Mobility devices are used to free the disabled from being 'confined' to one location, offering freedom. A better way to say that might be, 'uses a wheelchair'."
Moose, I understand the inappropriate questions asked by physicians. Doctors are often curious people, the disabled body is different, and they work within a medical model of disability. Add in we people with a visible disability represent the limits of medical care and a what should be a routine encounter becomes laden with all sorts pit falls. None of this however is an excuse for idle curiosity. I got angry with a dentist once because he was asking way too many questions about paralysis and I finally had to cut him off by pointedly asking how were the questions related to dental care.
Curiosity is fine but there needs to be some thought behind it.
It's one thing for a doctor to say, "Hey, do you mind answering some questions about [...]?" or, once, "There are some med students here, would you mind if I let them come in so they can have some practical experience with [...]?"
A milder version of the other side is the time I had an apparently large nasal polyp. Before I left I think everyone in a white coat in a ten mile radius had poked their way up my nose to have a look, and not one of them asked first!
Moose, Yes, curiosity needs to be based on reason. When a stranger wants to know why I use a wheelchair I always ask why do you want to know. Most people rude enough to ask have no actual reason for wanting to know.
I agree. Getting examined in the ER shouldn’t be like a lab specimen inspection. While you should acquire information about past conditions that may be relevant to the injury at hand, there is such a thing as overdoing it. And while it may be hard for nurses who are sometimes on round-the-clock shifts, they should really keep their cool, especially when dealing with disheveled patients and relatives.
Well, probably not all hospitals, but clearly some. Which shouldn't be. Soon as they start doing this to you, seek legal help immediately. Bring this up with the agencies of law, or at least those who are well-acquainted with it. This really shouldn't pass. Hospitals are places for healing, not dismay.
Tracy @ Craig Swapp
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