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.

***

The office I work at is lit by fluorescent lamps, which can trigger migraines for me, but the light level was reasonable enough that it wasn’t a problem up until that point. Last time the maintenance guy came through to replace the select few old-and-broken lights, I asked him to twist the bulbs above my desk so that they would dim or turn off, and he did so, and I was extremely happy. The lights were ok when they were on, but the new lights were already making my head hurt just having been replaced a couple dozen feet away. Now, my desk was a safe and comfortable space and I could work without that particular disruption.

Around Christmas, the safety coordinator in my office — who seems to dislike me, demonstrated well before this incident, and repeatedly since — took up a new pet project: replacing the lights. The safety coordinator decided that every single tube in the office needed to be replaced with brand new tubes at double the former intensity. And not only that: previously there had been two tubes per light; now, she wanted to fill all four tubes, in every single light, with that brand new double-intensity fluorescent lamp.

I arrived at work the day after the lights were put in, and I lasted five minutes at my desk before I had to stumble away. I was having an asthma attack (and I cannot use inhalers); my stomach was churning violently; my eyes were throbbing, and I actually lost vision altogether for a couple minutes — and my field of vision was covered in multi-colored spots for hours afterward, and my eyes were blurry and out of focus — I could not make my eyes focus, anywhere, not to read the screen in front of me or the clock on the opposite wall.

Five minutes. The time it took to boot my computer and email my supply person asking if my lights could be changed.

The answer was no, which marked the start of a months-long ordeal with Human Resources (which consists of three people, one of whom is the safety coordinator whose pet project this was in the first place). They told me that if I wanted it resolved quickly I shouldn’t file an ADA accommodation request, and then stonewalled me and eventually told me the only way to resolve it was to file an ADA. They told me it would be useless to make any change because “what if she moves somewhere else” (um, I work a specific program, do not have the job title to work anything else, and this program has never been anywhere other than this area of the building). Eventually I found out that at the safety meeting that preceded this decision, my supply person (who is an assistant back in the administration/HR area) raised her hand and specifically said, “Amanda would prefer to have her lights turned off, because it aggravates her migraines” — remembering when I had requested this of the maintenance man — and one of the union stewards, who knows I am disabled with a chronic pain condition, replied, “No, we can’t do that, we have to treat everybody exactly the same. No one can be treated differently.”

I had taken the initiative to move myself to the one desk where the lights were burning out almost immediately — checking messages on my phone every ten minutes and continuing to do the same work I had done before. On the day I left for two hours for a doctor’s appointment, HR chose that time to hold a meeting with my supervisor to relay the order that I return to my normal desk, as it was, no change to the lighting situation — and I was advised that refusing a direct order was a fireable offense.

I was “allowed” to wear sunglasses in the office, which merely delayed the onset of my migraine by a couple hours (primarily the eye strain from trying to read and operate a computer screen with sunglasses on, secondarily the light itself); I was leaving work early more often than not. The safety coordinator at one point came over to sit down at my desk and ask me — gesturing with her hands held over her brow, parallel to the ground — “Can’t you wear one of those — what are they called? –” Sigh. “Visors?” “Yes, that!” No, it wouldn’t, because the light was glaring off my desk, the windows, the file cabinets, the walls — blocking one direction of light in that situation would be like trying to take a shower with an eyedropper. She was unsatisfied with this answer and walked away. (Of course, if I had tried to use “one of those” before she came up with that bright idea, she probably would have called another meeting to order me to stop violating the dress code.)

My specific accommodation request — to simply twist the bulbs so that the lights above my desk were off — was eventually denied because nonharmful lighting would be a danger to the workers around me (all five of them hated those lights and had complained to HR about them as well!) — the difference between the old and new lights was like the difference between a sunny summer’s day and the surface of the sun; it’s already very brightly lit. They decided to order a cheap full-spectrum filter — and tsk to me that they would have to see if it was in their budget — that specifically advertised that it only reduced the light’s brightness by some trivial amount. I protested to them repeatedly that it was the brightness that was the problem, not the color of the light, but they would not allow any change to the brightness. Safety concern. Turned out I was still getting migraines, so they gave in to my tired request to order the gradient sleeve filters that were listed immediately under the original filters they had bought. And that worked. By… reducing the lights much as if they had been twisted off. As I requested in the first place. Which would have cost precisely nothing.

Well, it’s worked well enough since then. And since, ahem, the ballast was broken on a couple sides trying to install four sleeves on two sets — the lights are connected such that if one light goes out, its companion on the opposite side does too. So that took care of four lights for me. Of the four remaining, the gradient sleeve is turned to provide an amount of light I am happy with. And all is well.

At least, it remains well when my desk is of any use to me. But when my motherboard blows a couple capacitors and my computer is out for the count during one of the busiest weeks in our program, and I’m already marked as a Troublemaker by HR and thus do not want to go around swapping computers by myself, all of a sudden I’m right back in the same situation I started. Now a few of the new bulbs have dimmed with time, but it’s all shaking my stable footing in terms of pain.

My coworker offers me her desk, because she is spending most of her time upstairs. It is the desk next to mine, across the aisle. The desk in the corner of the building, with twice as many windows, and fluorescent lights that have not dimmed a bit, remaining significantly brighter than any in this quarter of the building.

I take it for the first afternoon, when my computer has just died, because it’s the only space available. And I pay for it. Because I’m seeing spots again by the end of the workday. My stomach is doing acrobatics and I’m afraid I’m going to vomit all night. It’s hard to breath, hard to think, hard to focus my eyes. Sensory overload, feel like I’m going to explode.

This was early in the week. I spend the next couple days parked at someone else’s desk, until that person comes back to work and I am deskless again. My coworker offers me her desk again, and I decline, saying “I can’t sit there because of the lights.” Oh, okay, she says.

Until the next day, Friday, the busiest day, when I am rushing around coordinating things for a dozen different people and being yelled at by clients all the way — using the maddeningly slow and unresponsive computer connected to the printer/scanner/fax equipment in the station next to my home desk. Seeing my frustration with this instability, my coworker again offers her desk. And again I decline. And this time, she throws in: “Well, if you change your mind, you can have it!” In her sweet, quiet voice, and she heads upstairs again.

Because this pain is really ultimately a personal decision.

This is the person who, sitting at that station computer scanning, asked me sweetly if I could turn my desk fan so it would cover her too (the building’s climate is very poorly controlled) — and I agree, because the air will still hit me and it is, seriously, really hot in here — but finishes her request with a laugh, “since I can’t have any light here.”

Sweet and quiet.

Sometimes, the people who are going to hurt you are easy to identify. Like my safety coordinator, who has tattled over the most trivial and frankly inaccurate things to my supervisor (who knows she is full of shit).

Sometimes, they aren’t.

***

I can never trust anyone to understand.

This knowledge always hangs in the back of my mind. It is disturbing, in the sense of creating unrest, destroying stability.

On the other hand, truly accepting it could free me — no more time spend artificially dividing people into categories of “Volatile, Will Probably Hurt Me” (focus all energies on protecting self from these!) and “Safe, Would Not Hurt Me” (so tired from the first category, no energy to protect self on any measure around them) — now I can spend that time and energy centering myself and my needs, thinking about what I really need to protect (from anybody), what I’m ok with people knowing — and even focusing that energy on becoming ok with those facts of my lives, myself…

But the eternal vulnerability can wear on me. Disclosing something one time means being vulnerable forever — the moment of sharing, the interaction may pass, but the knowledge can be used against me at any time. It can come up at any point in the future. Once I make the decision (not that there’s always a choice) to disclose something, I let it go forever — the knowledge is free in the hands of the people around me, and I can never take it back.

I could go on a decade-long effort to refocus on invisibility, on passing, on keeping secret — I could purge my social circle, present myself as totally normal and hide anything that might indicate otherwise — and all it takes is one person, saying one thing, to crumble that carefully-built structure in an instant.

The first time anybody knew I was sick — oh hell, people knew before I even got diagnosed at 12 years old! — that shell was cracked, and I never know if, when, it’s going to shatter, burst wide open. In fact, I can probably count on it happening, at some point in my life. Probably the least opportune point when it will cause the most damage, right?

No matter how careful I am, I occupy a precarious position.

It’s hard to accept that there is always going to be a wall there when I make personal connections with the currently nondisabled. Their knowledge can only go so far. They can be friendly and supportive, but they come from a fundamentally different place. And that means that at some point, they will do something potentially hurtful. Not understanding that it is potentially hurtful. Because they can only go on their own experience.

So even with people who might be friends — or at least friendly acquaintances — I have to have that wall. That knowledge of potential hurt. With all the weight it carries.

It’s a price I accept — rather than the price I try to deny, and end up experiencing anyway.

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 FWD/Forward.)