Today’s roundup brought to you by oh look a feather toy!

An acquaintance of mine shared a post that linked to Peter Singer’s latest piece in the NYT Magazine, “Why We Must Ration Healthcare.” Most of the article focuses on the fact that health care is currently rationed in the U.S., whether by price or by less tangible factors such as ER wait times. I don’t disagree with that part; that’s nothing more than a clear-eyed look at the reality that the American health care system has barriers to accessibility. Where Singer goes off the rails for a demonstration of Able-Bodied Privilege 101, however, is when he discusses how to put a value on human lives as a precursor to putting a value on health care. In order to demonstrate the utility of quality-adjusted life-year (QALY) in rationing health care, he uses the example of how an able-bodied person reacts to a hypothetical situation in which they become quadraplegic, and how their desire to live changes. He then goes on to present a situation in which persons with disabilities (PWD) are damned if they do and damned if they don’t: he suggests that if a PWD is happy with their life, they don’t need any treatment that would improve their lives, and if a PWD is not happy with their life, then it would be wasteful to spend money on treatment that would improve their lives.

I consider this a must-read for anyone who is new to disability rights. Pizza Diavola does an excellent job showing where Singer’s logic simply falls apart, and in fact his arguments do not make sense without assuming the supremacy of the able body. But disability is not an inherently bad experience; it only becomes this phenomenon of tragedy and suffering when society refuses to provide support for people of all sorts, rather than upholding the narrow and unstable health ideal.

Following Singer’s logic, we would pretty much never seek to improve our lives in any way because to do so would admit that we were not happy with our lives beforehand, and if we were happy with it, then it would be useless to do anything to change it. How this is seen as a rational analysis of New York Times caliber, I’m not sure. But apparently Peter Singer hates the wheel, the microwave oven, cotton fabric (admitting that life wasn’t good enough without versatile and insulating body covering!), the printing press, public education, agriculture, language, music, sunscreen, and buildings (admitting that life wasn’t good enough without shelter from the elements!). Among other things.

But because disability is constructed as a tragedic deviation, we end up with nonsensical, circular arguments such as these. And it has unfortunate influence, and will further marginalize people on the basis of their inherent inferiority and thus forfeited right to life (any life, according to Singer, who would have us all killed or otherwise eliminated rather than complicating things for the currently abled — and no, unfortunately, this is not exaggeration or extrapolation; he has advocated exactly this).

Help Find the Cure for Disablism!

Disablism is a common disorder which can begin in early childhood, though its symptoms are often much more marked in adulthood. Without preventative measures, disablism can grow into a chronic condition that becomes more difficult to cure with time. Early detection and proper treatment are key to helping those with disablism lead stronger, more productive lives.

FAQs

Is disablism contagious?
The jury is still out on this question. While some epidemiologists believe disablism may have a contagious aspect and may spread virulently, other researchers emphasize individual health habits and responsibilities.

What is the treatment?
Treatment varies by the degree to which the patient is affected. Treatment focuses on creating new, nondisablist behaviors. For patients unrectifiably deficient in empathy, legal remedies may be required. Please ask your doctor for more details.

What can I do?
Most importantly, educate yourself about disablism. Ask your health care provider, “am I disablist?” Equally important, watch for early signs of disablism in your loved ones and seek early treatment. Disablism is much more cureable in its early stages than when its victims become homicidal or harm others. In addition, help raise awareness about disablism. Discuss disablism and its harmful effects with others.

For more information and resources on disablism, call the Cure Disablism Network at 1-555-BE HUMAN.

This clip from British tv show That Mitchell and Webb Look has made the rounds as a short and sweet parody of gendered advertising. I think it is also useful as a look at medicalization and the way medical conditions are presented in popular culture.

Transcript:

[Blonde, average-looking woman standing in front of white background, reacting to voiceover by crouching and grimacing, with graphic overlay of radiating circles emphasizing different areas]
Woman: Ow. My stomach!
Man’s voice: Do you suffer from gut agony?
Woman: And my head!
Man’s voice: Tension head? [Woman nods, grimacing] Got that bloated feeling?
Woman [beginning to look slightly surprised and self-conscious]: Ooh…
Man’s voice: Inevitable wrinkles? The beginnings of lady moustache? [Woman covers lower half of face with hands] And now you’ve pissed yourself again? [Woman crosses legs] Women. You’re leaking, aging, hairy, overweight, and everything hurts –
[Young boy walks on set in white dress shirt splattered in colorful stains]
Man’s voice: — and your children’s clothes are filthy! No wonder men long for other, less clammy women. For God’s sake, sort yourself out.
[Image appears on screen of assortment of several hundred personal care products, captioned "APPROX $279.99, THE LOT."]
[Woman walks onto set toward couch, with large, bulging full tote bag on one shoulder]
Woman [tiredly]: Now I’m free to live my own life, my way! [falls back onto couch]
[Scene changes to white man in bathroom with razor]
Man’s voice: Men! Shave and get drunk!
[Man has satisfied look on his face as he opens medicine cabinet, finds glass of beer sitting inside, picks it up and smiles smugly, taking a sip]
Man’s voice: Because you’re already brilliant.
[Man smiles widely at camera as woman's hand appears, groping his chest]

ginmar speaks movingly about mental illness, military veterans, and the phenomenon of “fallen women.” A few pieces; there’s much more.

It’s a pain in the ass to experience. Frankly, you’re no fun to live around during this. I mean, people have been brought up on movie mental illness, where you turn into a sweet, soulful, funny, insightful, tragic, tormented character who Teaches Important Lessons, before dying in a beautiful way that gives the hero or heroine a chance to win an Oscar.

It’s especially bad if you’re a woman, because you’re supposed to live for others, do for others, and do this al behind the scenes. The fact is that women who transgress in some way—bad mothers, not mothers, convicts, the sick, the non-sexually rebellious—-are often abandoned. Women are supposed to stand by their man. What goes unsaid, what’s kept secret is that ill women are resented, dumped, and have to face a dual burden of illness and ill-treatment. There are approximately 6,500 homeless female veterans of this war. Homelessness is often the worst and final stop on the mental illness ladder. It’s bottom. Then, too, homeless women in general are ignored. When the truth is overwhelmingly awful and about women, people just shrug their shoulders and put it down to life. When women get angry about this treatment, they often find the mentally ill label used to stigmatize them.

[...]

Suicide tidied things up neatly. By killing herself, the victim had provided her family with a tragedy over which they could weep, instead of an inconvenient complication who aroused questions that were literally unthinkable for the thinkers of the day. With her gone, so was any reminder.

[...]

What’s interesting is that both male and female soldiers are often regarded in this way: better a flag-draped coffin than a living, complex, and often angry veteran. What a drag. Better a tragedy than a complication [...]

That’s the work of a certain class. The resentment is very much the attitude of the person who discovers that those who serve are also those who know their worth. That wasn’t supposed to be part of the deal. You’re supposed to work round the clock, then disappear when not needed, grateful and humble for scraps from the table.

Which is why maybe soldiers like me, especially women, are often greeted with sadistic gloating when we crumble.

Why it’s important to make a concerted effort to promote historically-un(der)represented classes. You can’t flick a switch and have equality instantly turn on. Even if discrimination ceased to exist instantly, it would still take time to catch up — today’s chemistry-minded three-year-old girls aren’t going to reach the upper echelons of the field for at least another few decades yet. Of course, prejudice doesn’t instantly disappear simply because the law forbids certain manifestations of it in certain settings. So we reach a point where we’re looking to fill President Obama’s cabinet, but the levels from which such people would be pulled are still disproportionately dominant-class folk. This is where it does become worthwhile to pick Ms. Smith over Mr. Doe, even when they are very similarly qualified, simply for the fact that Ms. Smith is a woman.

What the bloggy left don’t understand about Obama’s approach to politics. It’s something I’ve always admired about his judgment. He will make a good-faith effort to work with his opposition to get done what needs done. But if that opposition responds to his good-faith effort with a bad faith effort, he will unapologetically move forward without them. Here’s one reason why this is a Good Thing: it’s a tactical investment. It builds trust in the broader community and fosters relationships with those members of the opposition who might be won over in the future. That’s a worthwhile investment to make, I think.

The consequences of our market-worship culture. What, exactly, makes a standard of living? Is it the fancy consumer goods we all have? A car for every person, a flat-screen TV in every house and a smartphone in every palm? Or is it something else? The security of a stable neighborhood, quality health care that isn’t a hassle, and a good education for your child even if you can’t afford the cost of living in the ritziest districts? These are things the private sector simply don’t excel at.

Self-care is essential. I do not use this word lightly. If these is anything my condition has taught me, it is the importance of learning one’s own boundaries and one’s own needs, and respectfully tending to them. Without this, you aren’t going to be any good to anybody else. You’re going to be more help to someone if you’re doing well yourself. If you’re rushed, stressed, overwhelmed with anxiety, severely lacking in sleep, seriously emotionally preoccupied, down with the flu, whatever — you’re allowed to stop and take care of yourself before you continue your work. Why do we insist that we push forward, always, through whatever challenges we may face? There can be virtue in that. But there can also be folly. I think this is a cultural force that could use some reflection.

After the reaction to a certain post of mine, I think this advice from Jill would be well-heeded in a variety of situations:

I understand that men are in an uncomfortable position when an abortion story is dropped into date conversation. Abortion is socially marked as taboo and horrible and universally emotionally difficult, so I understand why the first reaction is “You poor thing” or “You’re so strong.” I’ve never been in the same position as the author, but I have been on a first date where the guy dropped his almost-abortion story: His girlfriend got pregnant, they decided to terminate the pregnancy, and then she had a miscarriage. It’s not an easy story to respond to, so I fell back on How To Deal With An Awkward Conversation Topic 101: Mirror the other person’s reaction. He seemed like he was sad about the situation, so I think I said something along the lines of, “That sounds like it was really hard, I’m sorry.” And the conversation moved on. I also had a friend who once told me the story of his hugely swollen testicle — like, baseball-sized. In recounting the story, he was cracking himself up, so I laughed along. It’s really not all that hard to take your cues from the person who lived through the unpleasant ordeal. And I think that’s the author’s point: Not that men should universally think abortion is no big deal, but that they should take women as individuals who have varied responses to situations, and who very well may not be traumatized or upset at all — but who may nonetheless be highly annoyed and physically discomforted by a 30-day period. Or they may just be relieved. Or they may be sad, or even devasted. Or they may feel stupid for getting pregnant. Or they may have emotions that are mixed and that evolve. You know, like most human beings.

Read Kate take a righteous hammer to the bullshit that is how we, as a culture, introduce children to disability. Woo go Kate!

OK, this post might seem a bit out of place (and ignore the quick bit of gender-enforcing at the end). It’s just so deeply joyful to be a witness to another person reveling in wonder, over things big or small. Grapefruit isn’t my thing, but you find enjoyment in funny places.

This is why I love slacktivist.

Adam Serwer took all of three posts at TAPPED, I think, to become my favorite writer at the mag (and it’s not for my lack of appreciation for Klein). This kind of reflection is why.

Jindal and Obama could not be more different, and the contrasts begin but don’t end with the fact that one of them changed his name to fit in while the other carried his daddy’s “funny” African moniker all the way to the White House. Last night, the differences were clear: Where Jindal was awkward, Obama was confident. Obama has mastered his voice, Jindal sounded like he didn’t know how to give a speech. Obama had mastered a variety of tones and cadences early in his career, Jindal offered a forced folksiness to a sing-song tune. But perhaps the most telling part of Jindal’s response was his extended introduction of his family history. Until now, the GOP has allowed the press to make the Obama comparisons, last night, Jindal tried to make one himself, an act that was inadvertently self-diminishing.

You can’t find your voice by trying to become what everyone else is. You do that by trying to find what it is that makes you you. See also M’s musings on identity.

I’m off to bed, to dream of miniwheats in the morning.

Yowza.

As an addendum, consider this photograph of Senator Obama, unabashedly courting the Young Women Who Love To See Men Being Shamelessly Goofy With Their Children vote:

Photos from.

– the women around the world who will be subjected to the stereotype Pfleger reinforces, of the overly emotional, unrelentingly ambitious, single-mindedly selfish woman?

Oh, no: “– Obama?”

Well, shit, I suppose my priorities are out of order.

Health is a struggle for me. A daily battle. A battle with myself, against my own body, and against the world that makes it all the more difficult for me to win that fight against my own medical demons. I don’t get the privilege of seeing a doctor once a year — I have had years where I did so, but it was because I was uninsured and only had the means to save up for one doctor’s visit that year, and I suffered for it the other 364 days and change, let me tell you.

Anyway, all this is to say that I’m going to make a point of including my own struggles on this blog. Not that many people will read it, but maybe some people will, and will get the idea that for the sick, health care is not an ideal, it’s not academic, it’s not a principle, it’s not politics, it’s a full time job. It’s something we have to face every day if we want to face the day at all.

So with all that, here’s my latest tale, stolen from my journal, about my fight with my health care provider to provide me my health care.

Let me note before this, that I have been routinely denied prescriptions since moving here PA and becoming eligible for insurance (finally); this doctor’s office has been impossible to deal with, and my insurance just as much so. I’ve been doctor hopping my entire life, trying to find someone who is knowledgeable and respectful. I’ve had two doctors in my lifetime who have given that to me — maybe three, now that I think about it (two of them gynecologists). Trust me, I have seen multitudinous more doctors than that throughout my life. It is tiring. It is aggravating. It is exhausting and painful. It really is the second shift for the sick, fighting the health care system just to get barely adequate care. I just feel like the more people who realize this, maybe the more people who will help fight to make it better.

***

Last Wednesday was the day I trekked out to McMurray for what was to be (I hope, anyway) my last ever visit to this fuckwit doctor’s office. The drive itself was aggravating — McMurray Road, a two-lane road that was quite a pleasant drive all told, is being completely repaved (Peters Township has way too much disposable income), and the workers decided to handle the traffic in the most idiotic way possible (I’ve seen it handled well, and this was not one of those times): let traffic back up for over a mile one way while letting one side through, then switch off. I was stuck in place, unmoving, for over 15 minutes, less than a mile away from the doctor’s office at that point.

I actually called in at that point to let the front desk know I’d be a little late, and the woman was actually nice to me. It’s the first time I’ve ever had someone at that office speak to me pleasantly, ever. Go figure.

Anyway, I got called back, sat down, and lectured on painkiller use for ten minutes by the physician’s assistant.

I am, apparently, supposed to be seen before every refill. Every refill. That’s every months, folks, conceivably for the rest of my life. I’m only twenty one years old. That’s a lot of doctor’s visits.

I made (as you’d expect) disapproving noises as she continued to talk right over me.

“We strongly frown on long term narcotic use. They’re usually meant for short term…”

“I know that.”

“And we don’t use it for fibromyalgia. We recommend anti-inflammatories –”

“Anti-inflammatories DO NOT WORK on fibromyalgia. It is a neurological condition, a disorder of the central nervous system that amplifies pain. If you have osteoporosis and fibromyalgia, then anti-inflammatories will work because osteoporosis causes inflammation, but the only thing fibromyalgia will do is amplify that pain.”

“…” [sort of stunned, doesn't know what to say]

“…”

“… [sigh] Yeah, so…”

… and she continued lecturing right over me, not listening to a word I had to say.

I was informed multiple times, just in case I wasn’t already aware, that a lot of people abuse painkillers and they have to be careful. I would say “I know that” and before I could say anything else she’d keep on lecturing me in that condescending tone of voice.

I told her that two months ago, I was told I would only need to be seen every six months to continue getting my refills. (Indeed, it had been six months since I’d seen the doctor for that purpose at the time.) She said “I don’t know who told you that,” and that their policy was every refill.

My suspicion is that they flagged me as a potential abuser, and she was just bullshitting me. Obviously that is not their policy or else I would not have been getting my refills relatively unimpeded every month up until now. Perhaps their policy changed, but wouldn’t she have said as much instead of just insisting that it is, and always has been, their policy?

So, yes. I am never going back there again. I had already decided as much when this whole fiasco began, and switched PCPs with my insurance the day I found out about all this. I have an appointment two weeks from now.

But when she pulled out the “anti-inflammatories” thing, that just sealed the deal right there. It has been at least ten years since the concept of fibromyalgia as an autoimmune, rheumatic, inflammatory disease fell out of credibility (though lamentably not popularity). TEN years. Central sensitization has been the leading theory for quite some time now. I’ve been up on this research since early high school. Granted, I know doctors are very busy people and they can’t keep up with every single development in the field of medicine, but this is still unforgivable in my mind. I should not know more than my own doctor about my condition — what’s the point in seeing her, then? It would be understandable, perhaps, if it were year-old research. But research that has been widely circulated and accepted for over ten years?

Fuck that.