Tag Archives: normal is only one option

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

‘Normal’ and the Dominant Narrative

He got through school, he has a good job and he married. That’s probably the biggest concern of Tourette’s sufferers and their relatives: Will their life be normal?

This quote comes from Anne Miller’s Washington Post piece, ‘‘American Idol’ segment helps push Tourette’s Syndrome into cultural mainstream,’ which I mentioned in ‘Whose Voices?‘ There’s a lot to unpack here, because there are a whole lot of problematic things going on.

‘Normality’ is often treated as a holy grail, especially for people with disabilities. Everything’s ok, as long as we can be normal, or at least act normal. ‘Normal’ is, of course, decided by the dominant members of society and any attempt to redefine normal from another perspective will be met with significant pushback. People who reject society’s definition of normal are viewed as highly suspect; look at the critical reporting on the Mad Pride movement, for example. How dare those people say they don’t want to take medications? How dare people say that being ‘normal,’ that fitting in with society’s demands, isn’t a big priority for them? For that matter, how dare people reject psychiatricization and the very idea of being ‘mad’ at all?

What this quote tells us is that getting through school, having a ‘good’ job, and getting married are the paragons of normality. People with disabilities who accomplish this triad of goals are role models. We should all aspire to this. Anyone who doesn’t is just giving up. Anyone who doesn’t want a college degree, a good job, and a spouse is clearly a social failure, no matter what ‘reasons’ can be mustered to explain why these goals are not of interest.

Never mind that there are barriers to getting through school. Everyone wants to go to school, right? There is not one single person in this world who is not interested in going to college. Who doesn’t believe that school is something that ou needs. Who has other goals. College is where it’s at! After all, if you don’t go to college, you are an abject failure who will never get anywhere in life.

That’s certainly what society seems to think. People are shamed for not wanting to go to college or for being unable to attend if they do want to go. Let alone people who want to leave high school early; they are informed that they are throwing their lives away and ‘dropping out.’ If you do decide not to go to school, you had better be an accomplished artist or musician or writer or something to redeem yourself in the eyes of society and even then people will express amazement about having ‘gotten so far without a college degree.’

And, of course, everyone wants a job, right? Specifically a ‘good job’? People who do not want to work are lazy. Because working is empowering! Not wanting to work makes you morally suspect and questionable. Not being able to work, even when you very much want to do so, is a moral failing; just try harder! If you’re not working, you must be feeding off the government, which means that you expect the working people to pay for your existence. Should you do something like choosing to live with your parents, you are obviously not realising your full potential.

Marriage, too, is the ultimate social goal. There are no reasons why anyone on Earth would not want to marry. First comes love, then comes marriage1, as we know, so clearly, if you are not married, you are not capable of love or being loved. And, of course, everyone who does want a spouse can get married, so it’s not as though there are any legal impediments to marriage.

These are all things which people believe.

These are all things which ‘advocates’ believe. Note that it’s right there in the quote; people with Tourette’s are ‘sufferers’ and their relatives just want them to be ‘normal.’ Miller is proud of her husband for ‘succeeding’ and being a ‘role model’ and she wants other people with disabilities to ‘succeed’ in the same way. I’m sure it’s well-meant, but it comes across as yet another reinforcement of social attitudes about who is normal, who is a good person, who is worthy.

Who gets to decide who is ‘normal’? Who gets to decide which life goals we should aspire to? It’s the people who write the dominant narrative.

Let’s contrast that quote I used at the opener with a quote from someone who actually has Tourette’s, from the same article:

At a recent public appearance, Koterba met a mother and her young daughter with Tourette’s. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. “No,” Koterba told the girl. “You’re going to have a great life. An amazing life. A creative, beautiful, wonderful life.”

  1. No baby in the baby carriage for you, because your child might be disabled like you.

Feminism Objectifies Women

You’ve heard the term “choice feminism” right? Usually used derisively by a person who is arguing: Just because a woman makes a choice does not make it a feminist choice, we have to be able to examine issues on a systemic rather than individual level, some choices that individual feels are good for them are actually going to be bad for the group as a whole and even bad for that individual when systemic issues are taken into consideration.

Here’s what annoys me about this argument. It always comes from the perspective of a white, cisgendered, currently nondisabled, middle-to-upper-class, heteronormative, and otherwise socially privileged person.

That doesn’t mean that it’s that kind of person saying it: it means that the very idea comes from a very specific perspective, in response to a very specific situation.

And not all of us are in that same situation.

The assumption, when this person says “we have to be able to make some sort of systemic analysis and that will mean some choices have to be wrong” they are almost always assuming some specific things.

* Women have been historically locked in their homes tending their houses and families, and larger society pushes against women’s ability to participate in the workforce, and women should participate in the workforce at the highest level possible.

* Women are oversexualized, and that sexualization takes specific forms, such as high heels, lipstick, makeup, dresses.

* Women are stereotyped as demure and submissive, soft and giving, caring and intuitive.

* Women are forced into roles as family carers, encouraged to have as many children as possible and to be the primary carer to those children, stereotyped as having special natural ability to raise children.

That’s just a few.

Here’s the thing. Everything I just said above about “women”? Isn’t true for women. Rather, it is true for white women. Or cisgendered women. Or nondisabled women. It is not true for women as a class.

Yet we continually operate on the assumption that it is!

But ask some other women, sometime, what their experience has been. Many poor and lower-class women, for example, would gladly tell you that they have never had a whiff of an option to stay home with their children — they’ve been out there washing the rich women’s drawers, or sewing them in the first place, so that they can afford dinner for their family a few days out of the week. Ask a black woman about being a nanny and wet nurse. Ask both of those women, and a few mentally or physically disabled women, about when they had their children taken away from them or weren’t allowed to spend any time with them at all (apart from the time they spent cleaning up the messes of the children of those rich/white/nondisabled women they worked for).

Ask a little black or brown girl in some poor neighborhoods about being expected to be virginal (a concept that depends on whiteness from the very beginning) until her wedding day. She’ll probably laugh at you. She’s been continually harassed, abused and assaulted since age six. She’s portrayed in larger culture as an unsexual unwoman and yet every man who crosses her path sees her as a potent sexual opportunity.

Ask the little girl with developmental disabilities about sex sometime, too. No one ever sees fit to give her any information on the subject. They fight to have her sterilized, or even be forced with serious drugs and surgical interventions to stay in a prepubescent state for the rest of her life, so that no one will ever have to deal with the messy proposition of a menstruating or pregnant r*t*rd girl. And if she does get pregnant, that baby had better be aborted immediately, because she could never, ever be anything but an utter failure of a parent. Sterilization is proposed precisely so that she will never get pregnant even if she is sexually assaulted by carers — precisely because everyone knows that she will be.

Ask the visibly disabled woman about being expected to dress up in skirts and high-heeled shoes. Everybody around her will wince at the thought of her in form-fitting, skin-showing clothing. Because, you know, “women” are oversexualized in that way. Ask her about those super-special parenting powers she supposedly has. Everybody around her will bristle at the thought of her having primary responsibility over a child. Because, you know, “women” are stereotyped as having those super-special powers.

All of these girls and women live very different lives as girls and women. The fact that they are marginalized as girls and women is one thing they share in common. But the ways in which they are marginalized are different!

A white woman is marginalized in a different way than a Latina woman is. And a Latina woman is marginalized in a different way than an indigenous woman! A nondisabled woman is marginalized in a different way than a paraplegic woman is… and a paraplegic woman is marginalized in a different way than a bipolar woman is. An upper-middle-class woman in urban New York is marginalized in a different way than a poor woman in urban New York — and a poor woman in New York is marginalized in a different way than a poor woman in Indiana.

There are different mechanisms of marginalization for different types of people — and the greater your difference from the presumed default person, the more different your type of marginalization looks than the privileged-other-than-gender woman.

And that means that what affects you, how it affects you, what issues are important to you, what is good for you and what is bad for you, is different for different sorts of people.

So we cannot, cannot assume, if we agree that “choice feminism” is misguided (and indeed, I believe that straw-ideology would be misguided — well, surely many people think that way, but that is not usually the argument that is being put forth in these discussions), that high heels, lipstick, being submissive, foregoing paid work to raise children, etc. etc. are clearly problematic under a systemic feminist analysis. Because they might be clearly problematic for one set of women — but they are not clearly problematic for the set of all women.

Actually, sensible shoes and baggy desexualized clothing might be clearly problematic for a different set of women who have been historically deprived of their right to any sexuality. Actually, full-time participation in the paid workforce might be clearly problematic for a different set of women who have already been working outside the home for centuries and have historically been denied the right to raise their own children. Actually, being aggressive and dominating or even merely appearing assertive and self-confident might be clearly problematic for a different set of women who are culturally typed as bossy, loud, demanding and unyielding and rarely read as anything but.

Given all of this, I am distrustful of anyone who argues against “choice feminism” or the idea that “any choice is a good choice for that person” because that is not the point. When people protest as you judge their choices against your standards, they are not claiming that no choice could ever be problematic. They are protesting because you are applying the standard of your particular experience against their very different experience. They are protesting because you are assuming that your experience is universal. They are protesting because you are invalidating their own experience, their own feelings and thoughts and desires, in the process. They are protesting because you are objectifying them. And it feels pretty shitty to be objectified.

(Cross-posted at three rivers fog.)

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.