Tag Archives: health

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom.Read more: I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

Recommended Reading for April 20, 2010

Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business

Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.

Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues

Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]

Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film

[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.

National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.

One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.

Am J Cardiol concern-trolling: “But mobility aids will stop them EXERCISING!”

So I stumble across this at Diabetes.co.uk: Mobility Scooters Can Increase Your Risk of Developing Daibetes and Heart Disease

“O really?”, thought I, “I wonder how well-controlled that scoldy little piece of disability panic was?” So I read on.

However, recent research suggests that mobility scooters can do more harm than good by heightening the risk of diabetes and heart disease .

“More harm than good?”, thought I, “I wonder who measured that? How did they decide which effects outweighed which in the goodness vs. badness stakes?” So I read on.

Astonishingly, a study of scooter users in the U.S.A discovered that almost one in five developed diabetes after buying one to get around.

“Huh”, though I. “One in five, eh? Hm, that doesn’t sound all that different from the baseline prevalence in the population, let alone the older/ill/disabled population.” So I read on.

The research, published in the American Journal of Cardiology, highlights how multiple benefits to patients’ health from being able to get around more easily are being erased by the effects on the cardiovascular system.

“Erased?”, thought I. “Completely wiped out? Huh. Was it the people concerned who decided this, or someone else?” So I read on.

Researchers are urging doctors to consider the risks of scooter use before making recommendations to patients invest in a scooter.

“*Doubletake*”, thought I. “Doctors should consider the risks? Doctors? Not, say, people with disabilities? Just doctors? Doctors should weigh up the risks before offering any options at all? Doctors should decide?” So I read on.

[…] There have even been incidents when scooters have killed individuals.


Moving on.

They recruited 102 patients, with an average age of 68, who had obtained medical approval for a scooter and monitored their health over six years. Even though patients stated that they felt better physically and mentally, tests demonstrated that 18.7 per cent developed diabetes during the follow-up period.

“Erm”, thought I, “Right then. Sure enough, it was an older population- nearly seventy years old on average. The prevalence of diabetes in the population older than 60 in the USA is 23.1%, and that’s not people who are already ill and have other risk factors. That’s not really a surprising number.”

“I wonder,” thought I, “I wonder how that control group did, the age- and disability-matched control group, the one who didn’t get scooters at the same time?”


Yeah, there wasn’t one. No control group.

Just a group of elderly people with cardiac failure, neurologic disease, disabling arthritis, and chronic lung disease. Just a group of people with disabilities trying to eke out a life and getting used as a Lesson To All Of Us about the dangers of sloth.

The abstract is here, in the American Journal of Cardiology. Effect of Motorized Scooters on Quality of Life and Cardiovascular Risk, Brian W Zagol and Richard A. Krasuski, Volume 105, Issue 5, Pages 672-676 (1 March 2010).

This sterling little doctor-centric chastisement does contain one really useful piece of information:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

I’ll say that again, ‘cos they buried the lead. After getting a scooter, people experienced:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

But the authors decided to slap a big ol’ “DESPITE” before this statement about how the lives of people with disabilities were improved by appropriate mobility aids, and instead go on to list the way several laboratory parameters became “worse” over time in this group of ill elderly people. In a study with NO. CONTROL. GROUP.

We have absolutely no idea how these laboratory parameters would have fared had the people concerned not obtained mobility scooters. All we know is that their quality of life improved significantly in all domains.

What the study fails to recognise – among other things – is that the alternative to getting about on mobility aids isn’t a day of jaunty strolling; it’s immobility. The alternative to going out sitting on a scooter isn’t a doubles tennis match and a brisk swim followed by a bootscooting class; it’s sitting at home.

But the quality of life of PWD, the lack of alternatives, is dismissed by these concerned medicos as a relatively trivial aside; as just one factor for doctors to consider before deciding whether to withhold their blessing – and their financial rubber-stamp – to mobility aids:

In conclusion, interventions, such as scooters, that improve self-perceived quality of life, can have detrimental long-term effects by increasing cardiovascular risk, particularly insulin resistance. Physicians should carefully weigh such risks before approving their use, as well as ensure healthy levels of activity afterward.

Dudes. Newsflash. You’re not the ones who should be carefully weighing this hypothetical “risk”. We are. And you sitting there planning to deliberately withhold mobility aid funding to the poorest people in the population because you think they might – not will, only might – see their blood glucose tweak a few points? Not ok.

You don’t get to dismiss the importance our self-perceived quality of life (“self-perceived”? Who do you think is the best person to assess our quality of life? You?) with a parenthetical “Despite”. What is important to us is important to us; you don’t get to override that with your misinformed concern-trolling. You don’t get to decide on your own, then inform us what’s important in our lives. You don’t get to exclude us from the conversation. You don’t get to tell us which risks are worth taking.

You don’t have the moral right to immobilise us based on your imposition of your own value system on our lives. You wouldn’t even have that right if this was good research. When it’s fucked-up hand-waving? Put the journal down, and start seeing real people. The people right in front of you, who are looking for independence, the ability to shop, the ability to socialise, the ability to go to the fucking doctor, the choice to have a better life. The life you’re planning to say “no” to.

Gender, health, and societal obligation

Kate Harding, writing at Broadsheet:

“If you ask us,” say Glamour editor Cindi Leive and Arianna Huffington, “the next feminist issue is sleep.” Personally, I never would have thought to ask those two what the next feminist issue is, but they make a pretty good case. “Americans are increasingly sleep-deprived, and the sleepiest people are, you guessed it, women. Single working women and working moms with young kids are especially drowsy: They tend to clock in an hour and a half shy of the roughly 7.5-hour minimum the human body needs to function happily and healthfully.” The negative effects of chronic sleep deprivation are well-documented, but that doesn’t inspire enough people to prioritize rest, and women often end up in a vicious cycle of sacrificing sleep in order to do extra work and make sure their domestic duties are fulfilled, causing all of the above to suffer. “Work decisions, relationship challenges, any life situation that requires you to know your own mind — they all require the judgment, problem-solving and creativity that only a rested brain is capable of and are all handled best when you bring to them the creativity and judgment that are enhanced by sleep.”

So many obligations are heaped on the shoulders of women, and it is pretty much impossible to fulfill all of them even if you completely neglect your own needs. Of course, trying to tend to your own needs means even fewer of those obligations fulfilled, and there are cries and admonishment of selfishness and failure and responsibility to others waiting for you should you assert your right to self-care, because by asserting the right to take time and energy exclusively for yourself, you are stealing time and energy that belongs to others.

Sleep is a contested act in American society (perhaps in others too, but I can only speak to the US): getting little of it becomes a point of pride; getting a lot of it is a symbol of laziness, selfishness, sloth, dirtiness, carelessness. People are expected to perform amazing tasks on as little sleep as possible, which is completely counterintuitive, because most people are going to perform worse with insufficient sleep — consider it a generalized manifestation of the supercrip phenomenon: exactly the people who are least supported/enabled to do something are the ones who are expected to do it better than normal people.

Better sleep would surely benefit many of us, but why?

According to Leive and Huffington, the main benefits realized are in service of others; the main beneficiaries are the people around you. Or, if you see the benefits, they are benefits that stem from an obligation to others, any self-benefit remaining firmly subordinate to the “greater good” of one’s family, colleagues and community members.

We should be well familiar with the concept of women as public property. Women’s bodies, women’s time, women’s possessions, women’s decisionmaking capacity, women’s self-determination — just about anything a woman possesses, though she doesn’t really possess. Rather, she is allowed use of something that is under her care but not her ownership: it belongs instead to the people around her.

Feminists are familiar with the idea that our society considers female reproductive organs to be public property. A woman’s vagina should be available for all comers (men), and simultaneously be unavailable so as not to waste its value to its eventual sole owner (a man). A woman’s uterus is to be used for the good of the human species/civilized society: the right kind of women are to reproduce as much as possible, so that their kind remain the dominant group in both pure numbers and in overall power. (On the other hand, the other kinds of women are called upon to perform the rough, menial work necessary to uphold modern society, while not polluting the human species by reproducing themselves.)

But honestly, public ownership of women extends so much further than their reproductive systems.

No woman is allowed to assume ownership of any part her physical self, her time or purpose: it is still an “indulgence” for a woman to eat anything more substantial than a leaf of lettuce, still “sinful” to enjoy less than 100 calories of overprocessed puddings and crackers. It is still somehow selfish to take a long bath or to sit and rest for an hour’s time, still slothful to refrain from moving, working, pushing, rushing every single moment of every day.

Women’s work, in general, is under-valued and un(der)paid — and it is uncompensated precisely because women’s time, their energy, their effort, do not actually belong to the women themselves, but rather to the rest of the world. It is theirs to use whenever, however, and however much they wish, and isn’t it ridiculous to suggest they should pay for the use of something that belongs to them in the first place?

This is all part and parcel of living in a patriarchy, a predictable result when society relies upon a person’s gender to determine hir position in society, the things sie will do, the roles sie will play, the direction hir life will take. But gender is not the only variant in play here. In fact, I believe that gender is actually secondary here to another factor — it is merely one avenue of manifestation for our cultural construction of health.

Surely you have heard of the theory that gender is not an inherent trait, but a performance. This theory is definitely not without flaws, but I bring it up in hopes that it provides a familiar framework for a discussion on the social construction of health.

Health, you see, is not merely an inherent trait. Health, instead, emcompasses a variety of factors, including a person’s intrinsic qualities but also the environment in which they operate and their everyday behaviors.

Health is not just what a person is. Health is also what a person does. And what drives a person to do something is not wholly internal, but rather is largely influenced by external factors.

Gender, for instance, is both an internal sense of being and something we do for other people, something we do because we want other people to think about us, react to us, in certain ways. And the things we do, and the expected reactions to them, are different depending on which culture we are operating in — dependent on where we live, on our ethnicity, on our class background, on any number of other things. What it means to wear certain types of clothing is different in different cultures. What it means to speak a certain way is different in different cultures. And so on.

This framework is — I hope — useful for understanding what health actually is.

The form “health” takes is different depending on the expectations of the culture you live in.

The ultimate importance of that so-defined “health” is different depending on the expectations of the culture you live in.

The role “health” plays in the culture, what “health” means in that culture, the way the people of that culture interact or engage with that idea of “health,” are different depending on the expectations of the culture you live in.

What you do to achieve “health” is different depending on the expectations of the culture you live in.

How your health affects your position in life, your economic opportunities, the support that is offered for you to live the kind of life you desire, are all different depending on the expectations of the culture you live in.

(And yes, all of this is just as true in a culture that makes use of the scientific method and sees itself as cool and rational. What is investigated, and how, and how the results are interpreted, and what lessons are drawn from those results, and how those lessons are applied in everyday life — all these things must grow out of the culture they happen in! )

Health, then, is not merely a personal state, but rather a cultural fulfillment. Health (of whatever kind) is expected of you, expected by the people around you. Your health is not your own, but instead belongs to your family, your community and your wider culture. You must achieve and maintain (whatever kind of) health, not because it benefits you personally, but because you will have deeply failed your fellow members of society if you don’t.

And this is what underlies the problematic aspect of Leive and Huffington’s statements. They are not suggesting that the sleep deficit for women is a problem because the woman herself feels fatigue or cognitive dysfunction. They are suggesting that the sleep deficit for women is a problem because the woman cannot fulfill the expectations of health — and the performance of duties that rely on that state of health — that society has for her. They are suggesting that the sleep deficit for women is a problem because then that woman personally fails her family, community and country.

Here, then, her lack of sleep lays bare her duty to society based on particular qualities she holds. But the disparity between her duty and her male peer’s duty would not exist if all of us did not have a duty to society to achieve and maintain a certain kind of health.

And Leive and Huffington, purporting to be advocating on women’s behalf, do nothing but reinforce the same system that screws women disproportionately when they center a woman’s obligations to the people around her over the personal experience of the woman herself.

And here, I hope, feminists will understand what disability activists mean when we talk about the supposed obligation of mentally ill people to submit to (certain kinds of) treatment for the sake of the rest of society — or what fat acceptance activists mean when we talk about the supposed obligation of all people to be as thin as possible for the sake of the rest of society — and so on.

Eating “healthy” (as determined by mainstream cultural wisdom, largely controlled by wealthy white temporarily-abled folk) is not done solely for oneself. Neither is “exercise” (of course, what counts as physical-activity-that-improves-health is controlled by the same people who control what counts as food-that-improves-health). Participation in the paid workforce is not done solely for oneself — we are, in part, fulfilling the obligation of “responsibility” (which is a component of the health performance, because when health is lacking, the ability to work declines — so work, then, is a demonstration that you are fulfilling your health obligation).

When a person neglects to fill a health-related obligation, there is someone there to remind them of the cost to the rest of society. We’ve all heard figures on the cost of obesity, the cost of heart problems, the cost of low employment rates, the cost of suboptimal nutrition, the cost of insufficient sexual education, the cost of lost sleep… wait, that sounds familiar. Anyway, the cost might be in dollar figures, might be in time lost, might be in persons participating in x activity, or might be more intangible: work decisions, relationship challenges, judgment, problem-solving, creativity… wait a second, didn’t we just hear that? Oh yeah.

And that’s what’s wrong with this angle. Ladies, you are hurting your families! You are failing your communities! You’re dragging all of society down with you! When all you have to do is get an extra hour of sleep — seriously, how selfish are you, staying up to get the dishes clean after your kids have gone to bed so that they’ll have clean bowls to eat cereal out of in the morning?

Except that the entire reason women are getting less sleep than they need is because they’re busy fulfilling their obligations to the rest of the world. The entire reason women are getting less sleep than they need is because they’re required to be well enough to handle multiple shifts, every single day, for their entire adult lives. The entire reason women are getting less sleep than they need is because they’re required to get up at stupid o’clock every morning to handle all the things they’re required to do before going to work (including the obligations to project an image of “health” — to look and smell fresh and clean, to be sufficiently hair-free, to wear attractive clothing, to possibly spend time putting on a face full of makeup and making her hair look presentable — all which are wrapped up in appearing healthy to the people around you), and when they get home from work they still have to do the laundry and make the dinner and wash the dishes and pick up the floor and wipe down the kitchen and bathroom counters and possibly wrangle kids or partners all the while —

— and then they are getting chided by self-proclaimed women’s advocates because they spend too much time doing things for other people, and not enough time doing things for oneself… for… other people…

And it’s impossible to separate the demands of womanhood from the demands of ability. It’s difficult to differentiate the hierarchy of value imposed on people of different genders from the hierarchy of value imposed on people of differing abilities.

I’m sure you get, by now, how women get completely and utterly screwed in this situation. But I invite you to imagine, then, how disabled people get completely and utterly screwed by this situation — and then I invite you to imagine how a system that did not value people differently due to their differing abilities would also remove a lot of the pressure that is currently dumped on women.

A system of equal access, opportunity, value, for people of all types of abilities, would be radically better for people currently oppressed under this gender-based system.

And when you reinforce the ability-based system of oppression, you make things worse for the women living under it.

… just sayin’.

(Cross-posted at three rivers fog.)