Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.
Spilt Milk at Feministe: Fat acceptance: when kindness is activism
Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?
Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences
As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.
Cripchick at cripchick’s blog: the politics of mobility
there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.
Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]
After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas. You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).
Finally, this week — September 13-19th — is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.]]>
For people who may dislike their bodies, for any number of reasons, these conversations end up being exclusionary, as they are often treated as ‘unenlightened’ for not loving their bodies and they are lectured in an attempt to get them to submit. For people with disabilities, an added layer of complexity is introduced, as it is assumed we do not or could not love our bodies because of our disabilities. Similar complexity can arise for some members of the trans community, who may experience inner conflict with our bodies but feel uncomfortable expressing it, for a variety of reasons ranging from fear of being perceived as spokespeople for the trans community when we are just talking about ourselves, to fear that discussing dislike/hatred for one’s body is not acceptable. Especially when encountering campaigns mandating that people love their ‘natural’ or ‘inner’ beauty, I am left with more questions than answers.
I was reminded of this by ‘Black Torso,’ the piece I featured in my post on sculpture last week. What, for example, is a breast cancer survivor who chooses to get reconstructive surgery supposed to do? The rebuilt breast is not ‘natural,’ so does that mean the patient does not love ou body? What about the breast cancer survivor who cannot afford reconstructive surgery or is not a candidate for it? Maybe ou hates the scar and is uncomfortable looking in the mirror, but feels unwelcome in body image discussions rooted in the idea that ‘love’ is mandatory for all people when engaging with their bodies.
I’d like to start deconstructing conversations about body image to make a seat at the table for people who might feel relegated to the fringes of those conversations right now, and there are a couple of angles that need to be considered with more care in conversations about body image and in campaigns designed to spark conversations about body image.
The first is the idea that everyone must love their bodies. Not all people love their bodies and they should not be required or pressured to; indeed, we should be actively creating a space for people who aren’t comfortable with the bodies they are in that doesn’t consist of ‘we will educate you into loving your body.’ We should talk, too, about the reasons why people may experience conflict with their bodies, and how social attitudes, life experiences, and other things may play a role in the relationship people have with their bodies, without singling out people or shaming them for not loving their bodies, or not loving them all the time.
The second is the idea of ‘healthy, strong, natural’ bodies being celebrated in these campaigns and focused on in language about body image. The fact is that not all bodies are healthy, strong, or natural. Health is something that changes over time from person to person, and while some people may always have healthy bodies, others do not. ‘Natural’ is also not necessarily something everyone possesses, and I dislike the idea that a body needs to be ‘natural’ (who is defining this, incidentally?) in order to be celebrated.
Finally, we have these really complicated intersections between body image and disability, compounded by a lot of social attitudes about disability. Disability is scary, so disabled bodies are scary, and I notice that many body image conversations leave out people with disabilities, because no one knows what to do with us. Looking through many of the responses to the American Able art project, I was struck by the fact that many people were uncomfortable with viewing a disabled body, especially in the context of desirability. If our bodies are so frightening that people can’t see them on television and in ad campaigns, it shouldn’t surprise me that people have trouble fitting us in to discussions about body image.
There doesn’t seem to be a lot of room, in body image conversations, for people who may feel conflicted about their bodies, for people who reject a lot of the ‘affirmations’ promoted, for people who may not fit into the categories some participants in these conversations assume apply to everyone. Are there exceptions to these rules? Conversations where people are thinking about issues like disability and the rejection of beauty? Yes, there absolutely are, but they are exceptions, not the norm, and that is a trend I would like to reverse.
This is what we talk about when we talk about working towards the neutral place; creating a space where bodies and identities are neutral, so there is room for everyone, room for all relationships between people and their bodies, room for people at all levels of exploring their identities and their bodies.]]>
My 7-year-old daughter is smart, pretty, and fun. Her father is of Hispanic descent, and he’s gorgeous, but he has a lot of thick, black body hair—including a “unibrow,” which he’s plucked since he was a teenager. Our daughter has inherited his thick, dark hair and my fair skin, and I’m shocked to see that her coarse eyebrows are starting to grow together—downy hairs are appearing across the bridge of her nose. She is beautiful, but her eyebrows bother me. Her 10-year-old cousin has a shockingly thick unibrow, and she came home in tears because her classmates teased her. She took a razor to her face and ended up cutting herself badly. I don’t want any of this to happen to my daughter, but I’m disgusted with myself for having such a reaction to a few stray hairs. Showing my daughter pictures of Frida Kahlo and talking to her about inner beauty will be worse than a lie, since I’m obviously bothered by her eyebrows! I’ve been tempted to look into electrolysis down the road, but what kind of maternal instinct is that?
Given that we live in a culture that views body hair on women as one of the most atrocious aesthetic offenses ever, it’s not terribly surprising that Mom has internalised harmful attitudes about body hair, and I commend her for recognising the social pressures influencing the way she’s viewing her daughter’s eyebrows. She also raises a really important point; as much as we talk about body positivity and acceptance, young girls with bodies that don’t meet society’s standards are still abused for it, and sometimes they injure (or kill themselves) in pursuit of beauty. Mom clearly feels conflicted here. She obviously wants to protect her daughter, while also addressing the oppressive beauty standards that surround her daughter’s body and the way she feels about her daughter’s looks. This is a tough letter to answer.
So, how did Yoffe respond?
Of course it’s superficial to worry over a few hairs. But humans are very superficial; in this country alone, we spend billions trying to either remove hair or grow it. Given the hirsute dynasties from which my daughter is descended, when I first held my darling in my arms and gazed on her mass of black hair, I whispered to her, “Don’t worry, baby girl, I will take care of you when the time comes to get some of your hair removed.” When I allowed her to get her eyebrows waxed the first time (she had been begging), it was a bonding experience to hold her hand while the deed was done. But she was a teenager by then, and, as you say, your daughter is only 7 years old. Right now the incipient unibrow is visible only to the close observer, or as T.S. Eliot wrote, “But in the lamplight, downed with light brown hair!” But the trajectory of her cousin is a warning. If your child has an easily fixed cosmetic problem, it’s best to avoid her wanting to take a razor to her face. Fortunately, today a little girl with a brow like Bert the Muppet can have it transformed almost instantly into something more like Brooke Shields. This article describes the growing trend for getting young girls with moustaches and heavy brows zapped with a cosmetic laser. I suggest for now that you stop counting hairs and relax. As the brow fills in, or she starts complaining that other kids comment on it, you can say that she has eyebrows just like Daddy. Explain that he takes some of his out with a tweezer, but you’re going to do something better for her that will mean the extra hair is gone for a long time or maybe forever. It’s OK, Mom, that you want a clear path for your daughter’s inner beauty to shine.
‘I really feel ya! My daughter has gross body hair too! Good thing we have lasers now, isn’t it!’
You know, I read that article at the Times too, and what I got out of it was not ‘hooray!’ but rather ‘wow, this is really awful, that social pressures about beauty and acceptable bodies are leading girls to get cosmetic procedures to modify themselves at younger and younger ages.’ The whole ‘Skin Deep’ series is a deeply disturbing look at the way our society views women and girls.
Why is Daughter’s hair a ‘problem,’ Prudie? Why is your entire response framed as ‘don’t worry, there’s an easy fix for this’? Why is there absolutely nothing in it about adult women who choose to wear their body hair as is? About letting Daughter make her own choices about her body hair? Why is it assumed that of course Daughter will want to wax her eyebrows when she’s older? Isn’t that basically setting her up to hate her body? Won’t she be getting enough of those messages from the people outside her home? Her mom obviously wants to be supportive of her, and clearly wants to counter some of these attitudes.
You know, I have a mustache. It’s pretty fine, so you probably wouldn’t notice it unless you were in one on one conversation with me. I like my mustache, and I pretty much always have. In fact, sometimes I wish it were thicker. Sure, I got shit for it when I was younger, but I just quoted Rita Mae Brown: ‘I like my mustache! It makes me look distinguished.’ I probably came home upset a few times, and my dad didn’t say ‘you know, I shave my face, but I can do something better for you and get it lasered off.’ He said ‘fuck ‘em.’
Now, I’m not saying Mom has to take that particular approach, but it would be awfully nice if Prudence hadn’t jumped right to body hatred; why not talk about Frida Kahlo, who made amazing art and wrote great things about her relationship with her body? Why not present other models of women accepting their body hair, and why not talk about how social attitudes lead to a stigma about thick eyebrows on women? Yes, a young girl who is being tormented for having thick eyebrows probably will want to remove them, and I certainly don’t blame her for that, but when the conversation at home starts with ‘we can fix it!’ and a reinforcement of harmful beauty standards, how is that good for her? My father was able to have a conversation with me at age seven about the social attitudes surrounding definitions of beauty, after all, and he made it clear he’d support me either way.
These are complicated things to navigate. There are lots of adult women who do not like their body hair, for a wide variety of reasons, and who choose to remove it, also for a wide variety of reasons. This letter troubles me because I feel like Prudence is completely discounting the idea that maybe Daughter should be raised with an open mind so that she can make decisions about her own body. Fighting oppressive beauty standards happens on a lot of fronts, and one of them should be in conversations with young women and girls.
Submissions for advice columns you’d like to see deconstructed (or celebrated) are always welcome: meloukhia at disabledfeminists dot com]]>
“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.)]]>
Following up our post here late last year about “disability and aging,” we’ve been thinking about the phrase “temporarily able-bodied,” a mainstay of disability community language which we’ve both been using for 30 years or so.
In Annaham’s Disability 101 post on this blog, she says:
“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.
We have the highest respect for the use of TAB and “temporarily able-bodied.” Using it is a way for a disability activist (or anyone discussing disability) to quickly and effectively bring all of her/his listeners into one group: some of us are disabled now and many of us will be sooner or later. It’s a phrase that builds community, that reminds people that the needs of some are really the needs of everyone. It’s akin to “universal design” as a phrase reminding us of what brings us together, rather than what separates us.
At the same time, like any catchphrase, it’s oversimplified. Disability is not inevitable. Only two things are always temporary: life, and youth. Everything else is conditional, contextual, and/or statistical. Definitions of ability/disability are exceedingly complex; even definitions of “aging” are less obvious than they might immediately appear.
Ability is not always temporary. Two large groups of people are able-bodied until they die: first, those who age able-bodied (not just 90-year-old hikers but also people over 80 who walk to the grocery store every day and clean their own homes). Second, and harder to see, are the people who die able-bodied at any age. In a culture that tries not to admit that people die at all and is especially resistant to admitting that young people ever die, it’s important to remember that death and old age are not synonymous. And, of course, disability is not always permanent either: the world is full of people who are temporarily disabled.
To return to our catch-phrase, “temporarily able-bodied” is often used as a reminder that disability can come to any person at any time, that you can wake up able-bodied and go to sleep disabled, just as you can wake up alive and never go to bed again. In this meaning, it’s both true and useful. But it’s also used, somewhat more sloppily, as a prediction: you, the individual I’m talking to, will not always be able-bodied. And among the things that are disturbing about that usage is that it encourages the cultural conflation of “disabled” and “old,” so that people in their 30s or 40s who are in some kind of body pain say they “feel old,” when what they feel is pain.
We’ll both keep using “temporarily able-bodied” in conversations about disability. And in those conversations, when we have the time and space to elaborate, we’ll explain how we’re not using it.]]>
If you are born differently abled, the state of your body is absolutely normal to you but if you come to this identity after being fully abled, it is a loss. I think that it is important to acknowledge this for exactly what it is. I have had doctors tell me that this is not healthy or normal. I have been encouraged to medicate myself into a false state of happiness. Being sad makes people uncomfortable and to own this sadness as completely as I do, even more so.
The woman that I was four years ago is gone forever. The woman that I thought that I would become ten years from now will never appear. This is a loss and it is traumatic. I have only lost one person in this life who was close to me and dealing with this disabled identity is very much the same sort of feeling. It is natural to mourn and this does not mean that you do not accept or love your new identity; it means that the person you were before was also of value.
Torchwood 2×11: Adrift
Do not start with ‘but she’s not mad, she’s autistic’. This is not the moment for comparing isms and/or deciding that neurological disabilities deserve more or less stigma than psychiatric ones. For the moment, please, let’s lump them all in the same category, under ‘things causing one to be locked in a loony bin so that no one has to see us’.
This episode disrespects people like Amanda. Do not argue that it’s different because this is a special *space* madness that doesn’t follow the normal rules of psychiatry or neurology. It’s not, it’s playing on the same tropes human beings have been playing with since madness was *invented*. They made it a special space madness so they had an excuse to drag out those tropes and wallow in them without conflicting with contemporary knowledge of the realities of mental illness, post-traumatic stress, etc.
With this Steam-Powered Prosthetic Arm, I Could Be As Strong as… A Normal Person [Note: This post has some problematic content, such as using the term “wheelchair bound”, but overall I think it’s interesting and worth reading.]
Steampunk, as we all are aware, draws its inspiration from the Victorian era, which, for all its accomplishments, wasn’t very good to people with disabilities. Halifax, where I live, has a few Heritage Houses, many of which were built during the era, and it doesn’t take much to see that most of them are wheelchair-inaccessible. By and large, disability issues fall off the steampunk radar. That doesn’t mean there aren’t any steampunks with disabilities. Out of curiousity, I put out feelers on Brass Goggles.
In fact, there are quite a few, and disabilities don’t really stop anybdy — Mark F. has been living with chronic muscle and join pain for 30 years (plus osteoarthritis; we should note that for many, it’s never just one illness, but a whole clusterfuck of problems which exacerbate each other), and yet has managed to refurbish an entire work cubicle, among other projects. Many other steampunks with disabilities also involve themselves with the physical side of steampunk: DIY, costuming, conventioneering.
Linkblurt: We are assaulted
*WARNINGS apply to this post – descriptions of assault and abuse of people with disabilities, including sexual abuse*
In the news:
Alan Johnson ‘stops the clock’ on Gary McKinnon’s extradition proceedings
In an eleventh-hour intervention, Alan Johnson told MPs that he had “stopped the clock” on proceedings to give Mr McKinnon’s lawyers time to consider medical reports and make legal representations.
Mr McKinnon, 43, from Wood Green, North London, suffers from Asperger’s syndrome, a form of autism. He says that his hacking of Pentagon computers was nothing more than him searching for reports of UFO sightings.
Feel free to send me anything you think I’d like to look at to email@example.com]]>
Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.
From the article:
In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.
As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients
When Simply Stating Your Truth Isn’t Enough:
What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”
It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.
Accessibility: The Soundtrack of my Life
We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.
Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.
Pain vs a Life:
Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.
And, this comment was left by Amanda of Ballastexistenz and I’m just going to C&P the whole thing because it is full of good reading material:
I’d like to present some links that could be useful further reading on these topics….
The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.
Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.
I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)
If you have links you think are relevant, don’t hesitate to email me: firstname.lastname@example.org Please note my schedule means I may not see your email for a few days.]]>
this is new to me. this idea that i should love my body. not hate it.
it’s funny, because i was about to say “this isn’t a post about body image.” but it is, isn’t it?
let’s cut to the point. i’m not talking about beauty standards.
i’m talking about my body. this physical thing.
i need to stop hating that physical thing.
it works differently. it doesn’t work like your body.
but that doesn’t make it bad.
this is hard to grasp. i don’t like this idea.
but maybe it’s better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.
maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.
maybe i need to understand that i just have to interact differently with my body to accomplish that.
and that is not bad. that doesn’t make me Less Than. that doesn’t even make me different — or it shouldn’t, anyway.
maybe the problem is that i have been so indoctrinated into this culture that i can’t even see myself as just being – it’s always how different i am from the “normal” “healthy” body.
you know what, dammit, my body is “healthy.” my body is damn well fucking “normal” for me. when i understand how to work with it? i live a pretty damn nice life.
but the culture i live in doesn’t allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn’t let me live my life like a normal person does.
i have a lot to work on, here.
revelation: i wouldn’t have such a hard fucking time learning how to work with my body if my culture hadn’t taught me to expect to be The Norm. if my culture hadn’t taught me that if you look like you’re fully-abled, then you must be. if my culture hadn’t taught me that if it doesn’t show up in the bloodwork or the ultrasound then it doesn’t exist. if my culture hadn’t taught me that my pain is simply pathology. if my culture hadn’t taught me about welfare queens and “milking the system.” if my culture hadn’t taught me that disability is both scary and pathetic.
…maybe i just need to understand that this is how my body works and damn it all, there shouldn’t be anything wrong with that — the fact that there is anything “wrong” is a sign of a fucked up culture — not of a fucked up body.
…the person who believes ‘I will be real when I am normal’ will always be almost a person, but will never make it all the way.
We have been told all our lives that to be accepted, to be successful, to be a whole person, we have to be “normal.”
And so we strive to change ourselves such that we resemble normalcy.
But it is a rare bird that can adapt itself to living in the water — or fish that can adapt itself to fly.1
Respect your body and your mind. They operate how they operate, and there is no need to change that, not for anyone’s sake. It is not a deficiency. It does not make you lesser. It is not deviancy. It is what you are, and it is good for you.
People on the outside will be uncomfortable with the implications of such a weird and different body (mind) being a good thing, because we have all been indoctrinated into the cult of dominance, where what dominates is Good and Right, and anything that is not the same is Bad and Wrong. It manifests itself in so many different ways even for the same differences. But that is the root of it.
To outsiders, the idea that what you are is definitionally good, because it is good for you, a different person, is disturbing. To outsiders, it says that then, what they are must be bad. And those who think that way will therefore reject you as a person, differences and all.
But there is a different way. There is a way built, fundamentally, on respect. On allowing one another to be what we are, and finding joy in what results. On knowing that when a person falters trying to live in this society, it should not be chalked up to the fact that they are different, but to the fact that society has failed to plan for anything but the dominant, and will then fail in trying to accommodate anything else.
It rests on, again, seeing a person and thinking not: burden, but: potential.
On seeing that person, and recognizing them as a person.
We should all be prepared to accommodate differences, even when it means a change or an extra effort. We should be prepared for this, because we expect as much already from those we are failing to accommodate. We already expect them to change their very being to be able to accommodate how we operate. So we should not protest when we are called upon to open our minds, to change how we think, to change what we do. After all, at least we are not being asked to change what we are.
AnneC’s chart: Conceptualizing Autism, transcribed below1
Some highlights, all emphasis mine.
My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.
This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.
Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?
At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.
Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.
Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.
This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:
The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.
This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.
What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.
…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.
* Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
* Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
* Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”
* Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
* Cognitive & Perceptual Style: What characterizes the experience of being Autistic
* Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies
* Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
* Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
* Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!
Healing is the process of a body, having been injured in some way, doing what it takes to restore itself to normalcy. Merriam-Webster says, specifically, “to make sound or whole” and “to restore to original purity or integrity.”
Take note of the words I have highlighted. What are they saying?
This cultural idea of healing, applied to a person’s spirit rather than body, draws upon the idea of an abnormal body being made “normal.” It assumes that any person not normal should be made normal.
But there are all sorts of bodies in this world. Bodies with broken bones, broken skin, disfigured limbs, faces, with cuts and gashes and wounds, missing limbs, missing organs, organs which work in abnormal ways — according to our cultural norms.
And, much the same, there are all sorts of people in this world. People who have survived assault and abuse, been subject to violence, faced trauma, been manipulated or neglected, dealt with addictions, lost loved ones. People who have experienced any number of things which cause them significant distress.
These people are expected to “heal” from their experience. They go through a modest amount of time processing the event emotionally and then return to normal.
But why should they be made normal?
Why should any broken person be pushed and pressured into a form which does not fit?
Why is it that a person who is anything other than normal is therefore less than whole?
Why can’t a person simply be who they are, even if they are injured or broken or disfigured, and still be considered a whole person?
Any person who has faced trauma will need to find ways to process their trauma, ways to cope, ways to live with what has changed in their life. But that person should not have to push hirself to go back to how things once were — or to make things resemble what they are for a person who has not faced that trauma. Things may be different. There is not only one way to live a life. There are many. And perhaps you will settle into a different one — one which works better for who you are now — which may not have worked for who you were before. And that way is no less right.
What do you do when life changes? You adapt. You make things fit you. You don’t make you fit everything else.
It’s ok to be broken. Being broken does not make you less than whole. It makes you different. And that’s ok.]]>