Disability Issues – Page 10

Airing of Grievances

[BRAIN FOG ALERT] I have been writing this one bit by bit, and having trouble reworking it quite to my liking. I didn’t want to let this go unsaid, so I decided to post it as is. Things might be a little clunky and unclear. If so, please feel free to bring it up in comments. Thanks. [/BRAIN FOG ALERT]

I would like to register a complaint, and I hope that all who hear it understand it in the lighthearted context in which it is intended. It is a serious concern, but it should be understood that it is not a placing of blame nor actually a complaint about the people involved: only the script that society has given them to read from.

Today I would like to consider the cause and the community of Fat Acceptance, Size Acceptance, Body Acceptance, Body Positivity, et al. This is a cause which holds at its heart that no person should be judged or maligned based on hir physical appearance, that size and shape are not moral conditions, that fat is a matter far more complicated than Calories-In-Calories-Out, and that both individuals and society are better off when bodies are treated as a respected comrade rather than a homicidal adversary.

If you are new to these topics, try reading this first.

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PSA

Some commenters touched on the subject in my previous post and I wanted to open up a thread to talk about that particular bent in the conversation.

Often, when someone learns that another person lives with some sort of medical condition, slight or severe, their first reaction is to suggest to that person some way they could make their condition better.

On behalf of all those persons, let me say: Stop.

Think.

That person has had that condition for months, years, or even their entire lifetime. You, on the other hand, have possibly heard of that condition — and possibly not! — and certainly have no experience living with it. Maybe you know someone else who has it, and maybe that’s a person you actually know fairly well (but that is a very small minority out of those who make these comments).

Which of these two people, do you think, knows a broader range of treatment options for said condition?

Don’t you think that person has already tried more treatment options than you even know exist?

And don’t you think, therefore, that such a suggestion is a bit of an insult to this person, who has, more than likely, struggled and fought with their condition for years already?

How do you think this person feels when sie has to tell you — especially if you are someone who is dear to hir, like a friend or family member — that sie has already tried that and it didn’t work, or sie has done the research on that treatment and it’s total bunk? Or that hir condition doesn’t work the way you think it does, and it’s actually caused hir a great amount of harm to try to think of it that way?

Maybe one time in fifty, you are bringing to light a treatment that this person was not previously aware of. Those other forty-nine times, you are putting this person in a bad spot, having to refuse a well-intentioned suggestion without insulting you in the process.

Certainly, you were only trying to be helpful. Sie knows that.

But maybe, if you thought about it a bit more, you would realize that if you really want to help this person, you can start by not insulting hir intelligence.

I have encountered these well-meaning people many, many times. They suggest this diet, or that exercise program, or this doctor, or that web site. But what they are doing in actuality is acting on the assumption that I have not put effort into learning about my condition, what causes it and how it works, and spent a significant amount of time looking into all of the treatment options, and continually trying new ones in an attempt to find something that works in my life.

And I know, I know you are trying to be nice. But having to confront people over and over again, especially people who are only trying to be nice!, with the facts about my condition and how it has affected my life, gets tiring after awhile, and makes me feel like a rotten jerk.

And I can tell you from experience, having talked with other folks with a variety of conditions, that I’m not the only one who feels that way.

So, again: Stop. And Think. Disability in particular, but illness in general, are subjects that are never really examined on a deeper level in mainstream society. This means that you have most likely been taught mechanisms to deal with the subjects that are very broad and superficial. But if you are serious about facing up to your own privilege and being a friend to those people without it, you will put a little more thought into the assumptions you rely upon when approaching these issues. Trust me, it will be appreciated.

OK, folks, it’s time for a privilege check.

(There isn’t a “brain fog” category here. Consider this your warning.)

We spent Sunday at the in-laws for dadw’s birthday. Spending time with his family is refreshingly easy — shooting the breeze, playing a couple of silly party games (highly recommended!). Still, when everyone settled in front of the tv I grabbed the copy of Consumer Reports on the table to page through.

One of the feature stories detailed the problems Americans have with sleep. We all know that adults in this country are having problems getting enough sleep every night (to say nothing of teenagers). The angle CR chose to take for this article was medication: what sort of meds are out there to help you sleep, and how they totally don’t work. According to CR, one in five Americans takes some sort of medication to get to sleep at night!*

Oh, how awful. People taking medicine.

… wait, what?

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Things that make my life easier: Heat edition

It’s just about as simple as it sounds! The #1 non-drug therapy I turn to when I need relief from pain is heat.

Heat is a great therapy to fall back on when you don’t want to have to take medicine, or when you can’t take medicine, or when you’re already taking too much. (Ahem. I take fourteen pills a day before any painkillers even enter the picture. I like to limit my need for them as much as possible.) It’s not often when a chronic pain patient can feel genuinely good, but heat provides for at least a small reprieve. The relaxation is an obvious benefit on its own, and it can also help reduce pain that comes from muscle tension (like those pesky migraines of mine), but it also helps relieve pain that isn’t related to muscle tension at all.

There are any number of ways to use heat…

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Quick hit: No fucking way

Today’s edition of “When Orange County sees blizzards” is brought to you by…

Here’s Robert Waldman:

One politically unfeasible approach to this would be to assign people randomly to HMO’s and pay the HMO’s based on their health but have the HMO’s pay for their health care. Then the HMO decides incentives. You have to decide how much a life is worth (and eyesight and all that) but it doesn’t depend on individual income and the decisions are made by an organization with tons of data.

No way this is going to fly in the real world.

And it damn well shouldn’t.

Am I the only one who sees how profoundly fucked up it is to construct a health market entirely on the end goal of making everyone a picture of perfect health?

Disturbingly similar to Japan’s Metabo program*, this plan would create a world where people with chronic health conditions are punished for having the audacity to lack the ability to wave a magic wand and instantly be free of whatever ails ’em.

My access to health care, in short, would depend on me being something I can never be. No amount of walking, spinach and stir-fries are ever going to take away my pain processing disorder, the tumors in my breasts, the endometrial implants in my pelvic area, or the fucked-up family history and genetic profile that leave me susceptible to severe anxiety and depression.

(Although, incidentally, if you take away all my medication, maybe I’ll finally drop from my current BMI of 25 to the BMI off 16.7 I was at before I started them. You know, the BMI where my doctors were noting in my medical records that I was visibly undernourished and my family members were afraid to hug me because I was so frail? But hey, at least I wouldn’t be overweight!)

Instead, I would be required to jump through so many extra hoops just to get the health care I am already fighting to get on a regular basis.

I do not want to see my doctors, pharmacists, and insurance company docked payment because I fail to live up to the yuppie ideal. I do not want to have to fill out countless health profiles and participate in incentive programs that hinge on me being able to do things I am not able to do.

And if you find a way to exempt people like me from this sort of incentive? You’re pretty much negating the entire point of the whole setup.

So, yeah. Over my dead fucking body. I know it’s not going to happen anyway, but I’d rather not see this sort of attitude fostered in the background. Because it leads to bad, bad places.

*See. I’d disclaim that I’m not calling fat a detrimental health condition, but honestly I think the need for that disclaimer comes out of a fear of the negative attitudes directed toward people with disabilities — and I don’t think that disability/illness/etc. is something we should be shying away from for those reasons.

And consider this a warning that any hatred regarding either fat or disability is going to be smacked down in comments. I have no tolerance for that shit.

Things that make my life easier

I am still accepting suggestions for a catchier title for this series: introduction here and first entry here.

A little background first. If you prefer to skip that, click here to jump directly to the product recommendation…

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My memories of high school are a blur by now. I can pick out snapshots — crouching in the fetal position outside the music building, the chill of the winter fog seeping deep down into my bones, the sensation of my “feminine sanitary products” reaching a saturation point, and trying not to let my chatting friends hear me moaning for the pain emanating from within me. Collapsing onto the grass out front, waiting for my mother to pick me up to take me to the ER for uncontrollable tremors, after the school nurse refused to even let me rest in her office, much less go home for the day. Dropping off a schedule change request form in the counselor’s office, seeking to reduce the amount of walking between classes… but most of it I honestly don’t remember.

I know that in the spring of my junior year, apparently I went to the doctor for headaches.

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Wheelchair Diaries: An Interview with the Artist

Artist Joan Tysinger was delighted on the day she received her wheelchair, one year ago. She explains that she was excited to finally have the chance to enjoy being outdoors, not having to drive everywhere. Joan says that her first thought upon arriving home was, “Finally, I’ll be able to do what all my neighbors do – just walk to the Flying Biscuit [a restaurant located not far from her house] for dinner.” So, she called her nephew and arranged to do just that -the pair planned to stroll to the neighborhood hang-out to celebrate.

What should have been an easy ten-minute walk turned into an hour of circumventing over-flowing trashcans left on the sidewalks, looking for curb-cuts, and finding routes around cars that blocked the walkways. The trip was so needlessly difficult that Joan and her nephew considered simply returning to the house. When they did finally reach their destination, Joan had made her decision – this was something that she was going to talk about in her art.

The result of that decision is a series of short films entitled Wheelchair Diaries, which document Joan’s travels around the sidewalks and streets of Atlanta.

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Esmin Green

If this story doesn’t disgust you, I don’t know what will:

It was a nightmare captured on surveillance video. A woman who had waited nearly 24 hours to be seen in a Brooklyn public hospital collapsed, fell face-down on the floor, convulsed and for nearly an hour — while several hospital staff members looked at her and one staff member even prodded her with her foot — received no aid. At some point during that time, she died.

The New York Civil Liberties Union has been sounding the alarm about New York City hospitals for some time now, calling the emergency room and inpatient units at Kings County Hospital “a chamber of filth, decay, indifference and danger.” It’s disgusting that someone had to die before the city bothered doing anything about it.

And this is just the one that we know about because the video was released on YouTube. The callous disregard that the hospital employees showed to Esmin Green is not possibly a one-time occurrence. Ms. Green was a poor, mentally ill woman of color. She apparently didn’t matter one bit to the employees at the hospital who were supposed to be giving her care. I would bet everything I own that she is not the first “unimportant” patient to receive that kind of treatment — she is just the first to have her death broadcast on YouTube, and so she is the first that the city cannot turn a blind eye towards.

And via Panopticon in the comments:

A state agency, the New York State Mental Hygiene Legal Service, filed a lawsuit a year ago, calling the psychiatric center “a chamber of filth, decay, indifference and danger.”

Patients, the suit said, “are subjected to overcrowded and squalid conditions often accompanied by physical abuse and unnecessary and punitive injections of mind-altering drugs.”

“From the moment a person steps through the doors,” it added, “she is stripped of her freedom and dignity and literally forced to fight for the essentials of life.”

The suit was especially critical of the hospital’s emergency ward, saying it is so poorly staffed that patients are often marooned there for days while they wait to be evaluated.

Sometimes, the unit runs out of chairs, according to the lawsuit, forcing people to wait on foam mats or on the waiting room floor. The suit also claims that bathrooms are filthy and filled with flies, and that patients who complain too loudly are sometimes handcuffed, beaten or injected with psychotropic drugs.

In case this doesn’t make it clear, mental health (and health care in general) is a feminist issue. This should appall and enrage all of us.

And no, it’s not just a New York City thing. A similar incident happened in LA about a year ago; and it’s only the most shocking horror stories that get reported. Usually, the people who are neglected are so low on the social totem pole that their deaths are just swept under the rug — another crazy colored lady? Nothing to see here.

We’ve had a lot of conversations at Feministe lately about mental illness, disability, the words we use, and how all of that intersects with feminism. Esmin Green and Edith Rodriguez died in part because they were poor women of color without very much influence, access or power. They died because they sought help in a system that is over-burdened to the breaking point — a system that enables the people within it to make cruel choices and to perpetuate racist, sexist and ableist hierarchies in their jobs. Esmin Green wasn’t just a woman; she was a woman of color who was mentally ill. She was “crazy,” she was poor, and she didn’t appear to be particularly powerful, so she was left to die on the floor. We are a truly sick society when we allow these abuses to continue.

Fighting Ableist Language

I often use words like “crazy,” “insane,” and “nutbag” to describe people whose views I think I bizarre, illogical or bigoted. But as Tekanji points out, words mean things. And while words like “crazy” are pretty steeped in my vocabulary, it really isn’t all that hard to make an effort to purge them. Consider this Step 1.

UPDATE: Contrary to the cries on other blogs, I’m not trying to take away your right to use the word “crazy.” I hear the argument that crazy has a modernized meaning that no longer attaches to people with mental illness. I hear the argument that this is overly PC and ridiculous. That’s fine and dandy. You can go on using crazy all ya like. I will probably use it 500 more times myself, because patterns of language are hard to break. My only point is that it’s been pointed out to me by several people that the language I use does harm to them. My first reaction was to think, “That’s dumb, and this PC business has gotten way out of control.” But you know what? It’s not actually that hard for me to try to check my language. It doesn’t do me any damage, and it saves other people from some, so I figure, why not? If you feel no need to do the same, then don’t — but this post wasn’t about me taking on everyone’s use of words like “nutjob.” It was about me sifting through my own thoughts and use of those words. Why that bothers people so much is bewildering.

Feisty

Harriet McBryde Johnson, a disability and civil rights advocate, died last week. Read Kay’s post for some background on this extraordinary woman’s life.

One thing you won’t find in Kay’s post is the ableist language coloring the obits in other publications. For example:

Harriet McBryde Johnson, a feisty champion of the rights of the disabled who came to prominence after she challenged a Princeton professor’s contention that severely disabled newborns could ethically be euthanized, died Wednesday at her home in Charleston, S.C. She was 50.

Disabled people who advocate for themselves are routinely labeled two things: “Feisty” and “brave.”

Also “feisty”: Uppity young women and small dogs.