Tag Archives: medical model

Recommended Reading for April 13, 2010

Renee Martin: I’m not a Feminist (and there is no but)

Blogs run by traditionally marginalised women do not attract the same attention by the media. When feminists are pulled from the internet for interviews, it is routinely the same white feminist voices representing the broad perspectives that are visible on the internet.

Flora: Guest Post – Heteronormativity and FSD

The vast majority of the medical profession is very heteronormative. If you are a woman, you are assumed to have a relationship with a man. If you don’t have one, you are assumed to want one. If you have one, you are assumed to be having intercourse, or to want to have intercourse eventually (waiting till you’re married etc). If you say you are sexually active, you are assumed to be having intercourse. And that even if you do other things besides intercourse, you still see intercourse as the “highlight,” as the only real important sex act.

evilpuppy at Livejournal: “I Have Always Depended on the Kindness of Strangers”

The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.”

Ally: Those are These, and These are…Me

I am one of Those People. I have friends who are Those People. That World, that you seem so quick to reassure me I am not part of? The world where every statement begins with a negative prefix, a non, dis, lacking-in, etc? That world of people who need things done for them, of people who take too long to do anything on their own, and get in everybody’s way, and can’t help but be inept, no one’s blaming them, but god, do we have to humor them? I am part of that world. When you talk about Those People, you are talking about me.

Maria L. La Ganga (Los Angeles Times): Severely disabled, is she still a mom? Battle nears over visitation rights of a woman injured in childbirth [trigger warning for very graphic descriptions of medical trauma]

Abbie’s parents have been named conservators of her estate, which includes a multimillion-dollar malpractice settlement, and are asking a Los Angeles County Superior Court judge to order Dan to let Abbie see her children. Dan has refused all requests, arguing that visitation would be too traumatic at their young age.

Disabled & Sick: We’ll Manage

Don has Marfan’s syndrome. It’s a genetic condition that he was born with. It’s the cause of his height (he’s 6’10” tall, 2.09m), his overall build, the way his fingers are shaped. It’s also the cause of his intense chronic pain, his wheelchair use, and his risky heart condition. It’s a spectrum condition – some people don’t have the chronic pain, but do have serious issues with their eyes. Some people don’t know they have Marfan’s until they have an aortic aneurysm and drop dead at 22 with no warning. Don grew up thinking he wouldn’t make it to 25, and his 30th birthday is next month.

Don also has Cancer. His cardiac specialist noticed the lump in his thyroid last year, before his serious ear-related surgery [1. I like to joke about his having too many holes in his head, but it turns out the problems with his mastoid were so bad that he could have died from a brain infection. Don’s health is never having to say you’re exaggerating.], and the whole thing’s been weaving its complicated way through Nova Scotia’s health care system ever since. He had surgery to remove his thyroid in September, with a doctor who assured us not only that there should be no problems with his surgery [2. Don can no longer speak above a whisper.], but that he should fully recover in a week or two.

Don still hasn’t recovered from surgery.

My mental jury is still out on whether or not Cancer is a disability. I think Susan Wendall makes a pretty good argument for it, by talking about how people with Cancer go through both social stigma and a lot of pain of treatment, but I admit to not knowing anyone with Cancer who’s described it as a disability, and I’m big on self-identifying. In this case, though, I’m going with Cancer = sick, because it’s allegedly cured. Everything’s fine now.

Except for the bit where none of the doctors along the way have known how to deal with Don’s disability at all. It’s like they somehow missed “Disability 101” in Doctor School.

We had the doctor who decided to start bending Don’s fingers back with no warning, discussion, or permission, apparently just to see how far they’d bend back. How this is relevant to a thyroid consultation, I don’t know, but Show & Tell Marfan’s Syndrome is pretty shite behaviour when one’s waiting for a Cancer diagnosis. Similar stunts have happened so often – bringing in additional students so they get a chance to “see a classic Marfan’s Patient”, like he’s a specimen in a zoo, or having Don’s classic Marfan’s features pointed out and discussed at length, as though he’s not right there.

The technician who did Don’s chest x-ray (to make sure there were no clots of Cancer in his lungs) baby talked to him, we can only assume because of the wheelchair, since we haven’t been able to get anyone to actually acknowledge that happened, let alone that it was a problem.

When he went in for the ultrasound on his neck… Oh, gosh, where do I begin? With the wheelchair inaccessible waiting room (you can wait in the hall!), or the refusal to allow Don’s wheelchair to even be in the room when he was being examined? As though able-bodied people are asked all the time to leave their only means of getting away behind. Plus, you know, the refusal to believe either of us that it’s common for people to play Show & Tell Marfan’s Syndrome.

And then there’s Doctor Fail. Oh, Doctor Fail, I hate you so much. The fast recovery time you assured us would happen, even when we both emphasized how long it took Don to recover from surgery previously, because he has a chronic pain condition. The bit where you prescribed far too low a dosage of thyroid replacement medication for someone of Don’s size, to the point where his energy levels dipped so badly he couldn’t handle reading fanfic because the plots were too complicated for him to follow, and he couldn’t get out of bed at all. [3. The radiologist increased his dosage to five times the amount. That was weeks ago. He’s still recovering.] Or, hey, the bit where you insisted that all mailed-out appointments needed to be confirmed by phone – despite knowing that Don can’t talk on the phone anymore because of the damage your surgery did to his vocal cords.

The latest round of fail is the radiation therapy he needs in post-Cancer treatment. I don’t even know how to describe the level of care he will need for this. They will need him to come right back off the thyroid meds. They need him to not be within 6 feet of anyone for any length of time. They need him to shower every single day, and then clean the shower out immediately. They need every plate he touches to be washed immediately, and all of his clothing washed immediately after taking it off.

When Don tried to point out that this is not something he can do, even when his thyroid meds are working just fine [4. Don has a homecare worker because normal showering and the like isn’t something he can currently do without aid], the response was a very cheerful “Oh, you’ll manage!”

Y’all, we are not managing. I can’t tell you in words how much we are not managing.

If we were a household of two able-bodied people, these would still be problems, but they wouldn’t be as overwhelming and dangerous as they are. If we were both two people who didn’t have mental health conditions [5. Don has Chronic Depression/Unipolar Disorder something-or-other, and I have a diagnosed mental health condition that I chose to never speak of on the internet because even the comments here at FWD include people who have merrily informed one and all that women with my mental health condition are bad.] this might be a bit less dire than it is. But as it stands, this has become a very very serious problem, and one that the medical people we are dealing with seem completely unable to address at any level, or any point.

The latest, today, was the psychiatrist telling Don to just wait things out and see if the anti-depressant that hasn’t been working for months suddenly kicks in, so the suicidal thoughts and horrible guilt at “what a burden” he is (he’s not!) both go away. Like magic, I guess. Because it’s normal, I guess, to be depressed, disabled, and Cancerous, so we shouldn’t treat it.

Our family has been in a pretty bad state for months now, because of so many people along the way, including us, assuming we’ll manage, somehow.

The support services designed for families ‘dealing with Cancer’ are not designed to include families like ours. Don can’t leave the house much, because it’s winter, and uncleared snow can be a problem. I’ve been so swamped that I’ve been out of the house for 18 hours a day at least four days a week. Support groups and services don’t seem to consider ‘wheelchair’, ‘mental health condition’, ‘complicated family situation’.

And so, here we are. I don’t think this is some tiny crack we’ve managed to slip through, but a big gaping chasm that has a bridge that’s passable only if you’re “general population”.

I honestly don’t know what we’re going to do. I guess we’ll manage.