Category Archives: bodies

Guest Post: Temporarily Able-Bodied: Useful, but not always true

by Laurie Toby Edison and Debbie Notkin
Body Impolitic

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.

A Difference in Perspective: Experiencing Avatar Exceeds the Marketing

We recently took a family excursion to the theatre in Seoul to see Avatar (and we can discuss our decision to take The Kid to see it another time, as in, not at all). I thought I would suck it up and see it as a service to the rest of the team here at FWD so that I could write an honest review from the perspective of someone who has been sheltered from the marketing of the movie. You can thank my language barrier and the reluctance of Hulu to stream in our country. Wev. As you may know, the marketing of the movie and views put forth by some of the actors kicked out some seriously ableist themes. After reading this transcript of the interview with the lead actor I was prepared to not like the movie at all because of the Bad Cripple message that I got from that video, the caricature of the disgruntled former Marine, and a lot of the other tropes that were chucked out there in a lot of the reviews. In fairness, I tried to not read a lot of them so that I would come into this review with a clear mind.

I was completely prepared to hate this movie.

I pretty much surprised myself and enjoyed some parts of it. Or the parts that I feel were realistically portrayed.

That is not to say that most of this movie was a big pile of fail from a feminist perspective.

To be fair off the top: This movie is pretty fucking racist. But guess what?

This is not the first time this story has been told with this theme, so I consider myself kind of inoculated to it at this point. By the time I had seen Dances With Wolves, Pocahantas, The Last Samurai, Fern Gully, and several others I am sure could come up on a more comprehensive list, I was used to having the “White Guy meets Native Group of people (and is either supposed to betray them or not), becomes accepted into their culture, and then falls in love with Native Woman or Culture (or both), and ultimately becomes the savior of Native People” movie shoved at me every Award season. Understand me when I say that I am not OK with the implications of this; I am simply becoming numb to the experience and how ingrained it has become.

Here I go. Oh, and: EXTREME SPOILER WARNING!

LAST CHANCE TO TURN BACK FOR SPOILERS

SPOILERS!

Despite what I believed going in, Jake Sully was not a disgruntled Marine who believed that he had to get his legs back in order to be a normal human being. He wasn’t seeking the Avatar as a vehicle to deliver this to him; I found his desire to be in the Avatar directly linked to his desire to be with the Na’ Vi people in general, as he had fallen in love with them and the Cheif’s daughter (if this sounds cheesy, don’t blame me. I think Cameron drank some bad milk before writing some of the dialogue). There is one scene where Jake first enters his brother’s Avatar that he excitedly runs about the garden and experiences using legs again… curling his toes in the dirt. I am not a wheelchair user, nor an actor pretending to be one, so I don’t know what it would be like to live in either of these situations. I can imagine that being a veteran, and having your worth tied to your abled body must be an experience that changes the way you view disability.

Jake Sully’s desire for getting his “real legs” back is directly linked to his feelings of self worth as a Marine, and the actual caricature, the Marine Colonel Quaritch, does nothing to make him feel differently, but rather offers to cut red tape with the VA (who apparently is still a shit pile of failure years in the future) in exchange for Sully’s promise to sabotage the Na’ Vi from inside. Jake isn’t the brainy super genius that his twin brother was, who was able to help pioneer the Avatar technology. Sully was only valuable for the parts of his body that the government needed. Before it was his legs that could carry him into combat, and now that those were no longer doing that, I got the feeling that Sully was struggling with what he was supposed to do now. Then, in a brilliant plot device, his amazingly intelligent and never appearing in this film twin brother, conveniently died leaving him to be called up because he has the correct DNA to sync with the avatar. The reality of Jake Sully’s life isn’t that he is an ableist jerk… rather, he has only ever been as good as what his body has to offer to the government. This is reinforced by Doctor Augustine, when she uses a constant barrage of insults against Sully’s mental acumen. He doesn’t measure up to what his twin was capable of.

Jake Sully, is, again, told he is not good enough by the able bodied world.

I don’t view these as the same thing. This isn’t a disgruntled Marine. This is a society that hasn’t learned how to accept a person outside of the standard, and doesn’t yet know how to accept them into their perfect world. Society doesn’t know what to do with a Jake Sully because it doesn’t want to…and why should it? It will just cast him off and get more fresh, able bodies to replace him. He isn’t their problem any more, right?

So, it is easy to paint this movie as ableist. I was ready to cast it aside as such, probably because I already hold James Cameron as a misogynistic douche nozzle and a racist ass hat to boot. I want him to fail at this too. But what he has done here actually impressed me a little (even if the actor’s own words betrayed the sentiment). He managed to show the real pain of a veteran, separated from the only thing that has ever given him a connection to anything useful. He has shown a disabled person living in the actual world…and sadly it still exists in the future.

The rest of the movie, despite being fucking gorgeous, is a pile of tropes waiting to spring forth. Despite decent performances from actors and actresses that I adore (Zoe Saldana, Giovanni Ribisi, and Sigorney Weaver), it was cliche. You want bad ass military chick who loves to blow shit up? We got that! (she dies) We have a chief’s daughter who falls incredibly in love with the mysterious outsider! We have the White Guy pretty much slaying the dragon (almost in a literal sense), and the hot warrior chick rides off behind him on its back. I almost choked on my popcorn when I saw him waving a machine gun around in the jungle as he led the natives to battle. How about the tree hugging White woman who wants to preserve the culture of the Natives because they can’t protect themselves (she dies).

All the CG in the world can’t cover up a bunch of “been there, done that” bullshit.

I leave you to your own thoughts.

Discuss.

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.

The Space Between…

Jennifer Hawkins, a white woman, poses nude with her arms purposefully placed, on the cover of Marie Claire magazine.This post originally posted at random babble… on 06 January 2010

The policing of other women’s bodies is never OK from a feminist standpoint. I can’t stress that point enough. It doesn’t serve any productive purpose in feminist discourse.

It is mostly an understood concept among people outside of the mainstream of feminism. Those who are able to work their theory around the concepts of white, straight, cis, upper-middle class, educated, able-bodied privilege.

Yet, a concept that still slips into the space between understanding is the difference between criticizing someone who comes from a place of thin privilege and tearing someone down for a body that is not like your own.

This article at Bitch, to me, was the latter.

It doesn’t seem like so long ago that I was a size 0. And yet, looking at myself now it feels so far away. That is something I am coming to grips with even today. But my mind remembers it all so well. How can nothing be something? And even at nothing I felt all my flaws. I covered in my towel so I didn’t have to glimpse myself in the mirror and be disgusted by what I saw. I still do that now! I refused to own a scale, afraid of what I would see (I still do that now!)…because it would send me into fits of fear and rage and crying…because no matter how much I threw up and refused to eat I could not weigh what all the charts said someone of my height and weight should…and my thighs jiggled and my belly bulged and my arms — while muscular from kitchen work — wiggled. Even though I was actually nothing. My clothing size was nothing.[1. Why are women’s sizes arbitrary numbers? Why can’t they be waist measurements? That would be more consistent?]

Jennifer Hawkins has thin privilege. Yes. She most certainly does. But when I was struggling I had two kinds of people to look at in magazines and on television: overly photoshopped women who were too perfect, and purposefully imperfect women meant to make me hate myself so that I would work to not be like them. There was no campaign of women of any size coming out to say “we are imperfect, but here we are“.

I will grant this: The Bitch piece does criticize the way that Jennifer Hawkins’ flaws have been the main focus of her nude cover. That is not the conversation that this cover should be invoking in feminist circles. But if she is talking about how hard this was for her, that is not something we should be criticizing. Dismissing her hesitancy, her own insecurities just because she is thin and has a different body type than someone else… that is not feminist either. When has it ever been OK for us to dismiss another woman’s experiences?

Why can’t we, as feminists, understand that?

She no longer has the protection of her Photoshop Deflector Shields, so she is in a vulnerable place, but her thin privilege doesn’t put her in the same place as all the fatties of the world who are crying in clothing stores because shirts are not made for their bodies. I get that. I think Kelsey Wallace at Bitch, for whom I just did a mostly lovely guest blogging stint w/ some of the FWD/Forward team, even gets that despite what I am garnering from her post.

Jennifer Hawkins is not the same as me. She does not know what it is like to walk into a doctor’s office and have hir assume that the pain or illness is caused by my weight before they know anything about me. She does not know the pain of the stares when I have trouble walking somewhere, as if it is definitely because I am a fattie. Or how clothes are made for people like her and not for me…or how society is made to make me feel like I am a big worthless pile of shit whose only chance at redemption is to adopt a “Lifestyle Change” for just sixty bucks a month or whatever.

But while we are throwing stones at Hawkins and scolding her for making us all feel like crap, let’s remember that she is entitled to feel like crap too. And other women who look like her, who aren’t models, who might feel like crap about themselves, they are allowed to feel that way too if they want too. Because some of them might be trying to recover or hold on or what the fuck ever. Maybe they are healthy, and have been told to Eat a Sandwich[2. Yes. I linked to them. I want people to see how awful that thread is, and how flippantly and dismissively that is defended, even when it is pointed out to the mod to be harmful. As in, she doesn’t care that some people find it harmful.], as if it funny or hip, but they can’t gain weight or can’t eat that much for whatever reason.

Or, maybe we, women of any size, are allowed to love our bodies and just be fucking happy, no matter what, and these women on these covers should show us that at any size we can all be beautiful (and maybe we will see more variance soon…but I am a silly, idealistic girl[3. I can’t back this up. I am not.]).

We can criticize thin privilege without policing other women’s bodies.

Just sayin’…

Lines in the Sand: Daly, Showalter and Tactics of Exclusion

The second-wave radical feminist theologian and professor Mary Daly died earlier this month, and there has been a veritable outpouring of eulogies from various feminist blogs.

Few of these eulogies have acknowledged Daly’s transphobia and racism.

I do not deny that Daly was an important figure in second-wave feminism, but to mourn her passing without a nod to her work’s more problematic aspects, or explorations of these aspects, are, to put it mildly, not good. In particular, the intense, hateful transphobia found in some of her writing, and her issues with unexamined white privilege and racism — which both QueenEmily at Questioning Transphobia and Sungold at Kittywampus cover very well in recent posts — strikes many as both deeply disturbing and an old pattern that has, and continues to, rear its grotesque head in certain segments of contemporary feminism. I include myself among those who are deeply troubled by Daly’s transphobic sentiments and her questionable record when it came to examining the entrenched racism and issues surrounding white privilege in the second-wave feminist movement.

I should probably mention at this point that I do not mean to appropriate or co-opt the struggles of trans* folks in any way, although my cis privilege will most likely be unintentionally reflected at points in this piece. Though the struggles of trans* people, trans feminists and PWDs and disabled feminists are not the exact same, some exclusionary tactics of certain cisgendered feminists and those of abled feminists sometimes take similar forms, especially within the mainstream feminist movement. The oppression of trans* folks and PWDs in cis, abled culture intersect in a number of ways; this post, however, barely scratches that surface. I believe that the many issues present in Daly’s work–as well as the reaction to her death around the blogosphere–can serve as just one entry point to discussions of the similarities in oppression(s) that trans* people and PWDs face. There are also clear differences, among them the fact Daly used language that can only be called genocidal, while many other feminists of her generation did not advocate such an extreme path when it came to keeping certain individuals out of feminism. I will be focusing on feminism’s exclusion of trans* and PWDs as reflected in the work of two very influential second-wave feminists here, but there is, of course, much more to these stories.

Daly’s penchant for exclusion and outright hatred (particularly of trans* individuals) couched in oddly phrased academic rhetoric unfortunately brings to mind another famous second-waver’s similar issues with people (particularly women) with disabilities. Princeton scholar Elaine Showalter — best known for bringing feminist literary theory to the fore in the academy at a time when such a discipline was, for the most part, inconceivable — dismissed disabling conditions like Chronic Fatigue Syndrome, Gulf War Syndrome and mental health issues such as Dissociative Identity Disorder (referred to in the text as Multiple Personality Disorder) in her 1997 book Hystories.

In Hystories, Showalter attempted to debunk “modern media epidemics” such as the aforementioned disabilities as well as more traditionally disproven phenomena such as alien abduction and satanic ritual abuse. In the book’s chapter on Chronic Fatigue, Showalter rather disingenuously declared that she did not want to “disparage the suffering” of people with such conditions only a few pages before she called CFS an extension of Western “fin de siecle [end of the century] anxiety.” She followed this stunning assertion with the claim that the Western news media was primarily responsible for making CFS into an escalating “psychogenic epidemic” (117, 131).

Like Daly’s severe opinion of trans* people as dupes of the medical industry (which Kittywampus cites in her post), Showalter also seemed to be taken with the idea that people with CFS are somehow being duped into thinking that they are ill because of the media focus on their condition. She wrote that many CFS patients and their defenders are “hostile to psychiatric or social explanations” of the condition, and that many of them react in a way that is not friendly to the labeling of CFS as “psychiatric” (128). However, the reactions of these same patients make sense if considered from a non-abled perspective. Showalter also seemed completely mystified by these “hostile” reactions. If CFS is just a manifestation of “fin seicle anxiety,” as she contended (adding that “emotions have tremendous power over the body”) she seemed to push the conclusion — without any scientific or medical proof — that many people with CFS have somehow been brainwashed into believing they have it; thus, the media-driven “hysterical epidemic” has worked.

Nowhere are feminists with Chronic Fatigue Syndrome or related conditions consulted; the not-so-feminist implication here is that feminists with Chronic Fatigue Syndrome either do not exist or are just victims of a “hysterical” media-led epidemic and therefore cannot be “real” feminists. This is similar to how trans* feminists were erased, excluded and castigated by Daly as somehow not “real” women or feminists, and as benefiting from patriarchy in a way that “real” women and feminists could not. To put it crudely: This is exclusionary bullcrap, and it does not do trans* people, people with disabilities, feminists who fit either (or both) of these categories, or the feminist movement as a whole any favors whatsoever.

Exclusion is not radical. It has never been radical. It is, in fact, extraordinarily status-quo. No one should be able to arbitrarily pick and choose who “belongs” in the feminist movement and who does not, especially if those who are being excluded because of their gender identity, sexual identity or disability actively identify as feminist. Feminism should be for a wide variety of people; exclusion, however, is something that is not — and has never been — very  feminist.

Author’s note: I will be moderating this thread with an iron fist; please have the courtesy to not try to tell me how Daly really was an ally to trans* folks, or how Showalter didn’t mean what she said about CFS *that* way, or that either author’s influence on the feminist movement somehow excuses their hatred and bigotry. Thank you.

[Cross-posted to Ham.Blog]

It Will Always Be The First Thing I Think Of

**TRIGGER WARNING FOR DISCUSSION OF SELF-HARM**

I’ve been under some significant emotional stress lately, more so than usual. And I’ve had a couple of incidents when I received some very upsetting news. Of course I’ve cried. Sobbed, even. And reached out to my friends and family and cared for myself in all the healthy and productive ways I learned in my years of therapy. Take a hot bath. Read a good book. Snuggle with the kitty. Get enough sleep. All that kind of thing.

But before that – before the tears even start welling up, much less spilling over – my mind flashes on an image of my left forearm. Sometimes it’s being slashed with a razor blade. Sometimes it’s being burned with a cigarette or the hot metal of a lighter. In one particularly vivid recent image, my left wrist was being smashed with a hammer. This happens in less than seconds, before any other reaction. It’s entirely unconscious and I’m often surprised by how quickly and vividly the images take over my consciousness.

I used to self harm a lot. I thought I’d made it up myself, back when I realized that scratching at one spot on my skin with a thumbnail would peel back the skin to expose glistening wet red pain. I quickly progressed to razor blades and learned the exquisite joy of making a perfectly straight line in my skin, imposing some kind of geometry and order on my out of control body that would hopefully extend into my increasingly disordered mind. I learned how pressing a hot lighter to the inside of my ankle would send a poker of pain straight up my body in a wave so powerful it drove out every other sensation or thought. I learned about long sleeves in summer, the trick of putting a painful cut on the inside of my wrist so it would throb every time I took my mittens on or off. My arms looked so bad people thought I was using heroin. (Even writing this out makes me want it.)

And then I stopped. (Not so easily, of course, lots of safety contracts and lists of health coping activities and techniques and medication and relapsing and all of that. But I stopped.) And it’s been … I don’t even remember the last time I did it. Over 10 years, certainly. Long enough that you can hardly see any of the scars unless you know exactly where to look.

But it is still the first thing I think of. My first unconscious innate reaction to stress or emotional pain or just feeling overwhelmed and drowned by my own emotions. It is always there, just under the skin, waiting for me to be weak enough for it to take over again. That’s why I will never trust myself enough to have a razor blade or an x-acto knife in the house – I know that if they’re there, I’ll lose my way sometime.

[I just turned my head and saw two straight pins sitting on the desk (I was mending a hem) and *boom* I see them plunging into my wrist, just near the bone. It’s not that I imagine the process of picking them up – my mind flashes straight to an image of me pushing it into my skin, with the idea that “this is right, this is good.” I can almost feel myself relaxing while I visualize it and then I shake my head and it’s gone and I’m disappointed in myself for even thinking of it.]

I’m beginning to think it will never stop. I may never do it again – I hope I never do it again, I intend never to do it again – but it will always be there. It will always be the first thing I think of, before there’s even time to think.

Less Than / More Than – My complicated thoughts on reproductive rights & feminist discussions

When I’m not being a student, I typically get temp jobs working in a variety of offices. Once things get settled, and folks realise I am married, they often start asking about kids. “Do you have kids? No? When are you having kids? It’s not too late, you know!”

This may seem like an opening for a post about being child-free, but it’s not.

I often put these questions off with flippancy or a shrug or just saying we’re not interested in having kids. In my experience, this will often have people leave the issue be.

Sometimes, though, people will hound and hound and hound.

“Oh, it’s different when they’re yours. But what about Don, what does he think of all of this? What about your parents? What about– what about– what about?” [1. Everything in quotation marks in this post is a paraphrase.]

Do you want to know the secret way of getting people to never again ask why you’re not having children?

At some point, drop into a conversation that your husband’s disability is genetic.

Without fail, that has stopped every single person who has asked and asked and asked about children, even when the “genetic” bomb isn’t dropped in a conversation about having children.

One of the reasons why the focus of abortion! abortion! abortion! whenever talking about reproductive rights really bothers me (and a lot of others) is because of the assumption that people like Don & I shouldn’t have children (because – oh no! – the child likely will have Marfan’s just like Don! And everyone knows people like Don are a burden on the system/have miserable lives/are never happy/can never be married/are all the same/should be stopped/are just an example for the rest of us). When people focus on reproductive rights only involving abortion, they neglect that, for people like us, the pushback is to not have children. Don’t burden the system. Think of the children – and don’t have any.

I’ve seen similar conversations play out around the feminist blogosphere. [1. I have decided not to link to specific examples, because it’s a general attitude I’m talking about here. And also, who wants to start a blog-war? Not I, said the Anna.] When older women have children, there is always a sudden upswing in “BUT THE CHILD MIGHT HAVE A DISABILITY!” (Yes, the child might. And the child might fall out of a tree and land wrong. Or the child might grow up to be the next Stephen Harper and prorogue Canadian government. WHO KNOWS!) “Think of the children!”

The same fears are reflected when discussing women with disabilities having children (with bonus “but how will she care for the child?”), or when parents forcibly sterilize their disabled daughters.

This pains me, perhaps especially as someone who doesn’t want children. It pains many other women who, for a variety of reasons, are discouraged or outright prevented from having children they want. That, in North America, these women are overwhelmingly women of colour, lower class, disabled, queer – that they’re often women who have been institutionalised in some way, be it a “medical” institution or a “criminal” one – is not a coincidence.

In my experience, marginalized voices who speak out about this disparity between on-line feminist discussions of abortion and on-line feminist discussions from a broader reproductive justice framework [1. FREE Halifax: Feminists for Reproductive Justice & Equality. We meet every other Tuesday for teach-ins & movies about Reproductive Justice. Look for us on Facebook.] are often shouted down, or ignored. We’re told our issues are “special circumstances”, or “pet projects” or “in the minority” or “don’t apply to as many people” or … Well, basically everything feminists in general are told when they talk about issues that are “special circumstances” that don’t apply to enough people (read: men) to count.

Frankly, I end up not knowing where to go from here. Do we, who are limited on spoons or forks or energy or time, keep trying to push for more mainstream feminist discussion on these issues? Do we form our own spaces, our own groups, and have our own discussions? Do we write blog posts that seem to dwindle down, rather than lead us all into the future?

I don’t know. I know and respect people who have made each of those choices, and still others that I haven’t mentioned. But I don’t know what the right one is.

Maybe they all are.

Quoted: Karl Michalak, “Face Value” (excerpt)

Everything healed up
but in a very strange way
Years later
when it was very obvious
that something was very wrong with my face
everyone
said one or more of the following:

It’s the Lord’s will.
Just learn to live with it.
It’s all in your imagination.
Don’t be so self-centered.
Shut up and do your homework.
Other people are worse off than you.

[Full text available in the 2004 anthology Queer Crips: Disabled Gay Men and Their Stories, edited by Bob Guter and John R. Kilacky.]

Backscatter X-ray scanners, security theatre, and marginalised bodies

backscatter x-ray scan in which the body surface of a person is clearly visibleI’ve just been reading about backscatter X-rays and airport security in my local paper: UK brings in full body scanners. The UK is looking to push these into routine use, using the attempted attack at Christmas as an excuse. In this attack, the perpetrator had an incendiary device strapped to his leg, and managed to set his own pants on fire.

There has been controversy over the scanners since their existence hit the media several years ago. The full body scans show the body quite clearly – a bit like the images purported to be revealed by those “X-ray Glasses!!” advertised in old comic books.

Concern has largely centred around how the scanners might affect able-bodied cis people: that they will feel exposed, that the security people might be hur-hurring over their fat rolls or breasts, that the images might be saved. Security “experts” have scrambled to refute the claims, saying that only “same-sex” people will read the scans (as if this is supposed to be reassuring to non binary gendered people), that the scan reader will be in a separate room from the scannee, that the images will not be able to be saved with the technology. They assure us that there will be “privacy algorithms” in place.

If anyone believes airline security operators for a second when it comes to future commitments to respect the privacy of airline travellers? I’ve a harbour bridge I’d like to sell you.

The same security experts have assured the media that the scans will be optional, provided as a purely voluntary alternative to a full body pat-down. I’m going to go out on a limb right now and guess that the images are not, for example, an option for wheelchair users who can’t stand up out of the chair. Reassurance of options and choices are not particularly useful for the large swathes of the population who can’t access them.

Things that will likely show up in a full body scanner:

Urinary catheters.

Incontinence pads.

Colostomy and ileostomy bags.

PEG feeding tubes.

Mastectomy prostheses.

Certain medication pumps and implanted ports, such as insulin pumps.

TENS machines.

Pacemakers.

The bodies, including genitalia, of transgender and intersex and genderqueer people.

All of these are the signs of bodies already marginalised. Some of these signs may be clear on current security screenings – some may not.

People with marginalised bodies already have major issues with air travel – with the uncertainty of the security process, with the practicalities of dealing with aids and needs while travelling, with the spoon-sapping of travel, with no option but unfamiliar foods that may affect the body unpredictably, with the difficulty of maintaining personal privacy in prolonged periods in close quarters with others, with unpredictable delays that affect health, with security threats when bodies don’t ‘match’ identification documents.

Soon there may be one more element in the mix: the sure knowledge that one’s personal business will be laid bare in front of security-theatre goons who will almost certainly be poorly trained in disability awareness and gender tolerance.

I give it 24 hours before clandestine mobile phone images of travellers with marginalised bodies show up on the Internet.

Is this worth it?

Injury versus disability

I have an injury – animal bites on my face, forearms and hands from a skirmish with a feral cat outside my office building. I’ve got quite a black eye with puncture wounds on my cheek, so my injuries are immediately visible. I’ve also got severe swelling in my left index finger so I can’t bend it or use it for anything, and bumping it against something sends extremely sharp pains through my hand that last for about half an hour.

I am having a fair amount of trouble with it. I can’t open jars or plastic packaging or use a can opener. I can’t hold the steering wheel very well with my left hand. I’m right handed so I can still use a pen and hold a fork and spoon, but my typing is totally jacked up – I can use the other fingers on my hand if I keep the injured finger extended, but that makes my hand go in an unfamiliar position and the rest of the muscles start cramping and aching if I do it for long, making me rely primarily on hunt n peck typing with my right hand. (I usually type over 120 words per minute, so this significantly slows me down.)

When people observe or hear about these functional impairments, they keep saying to me “oh well thank goodness this will heal. Imagine how it would be if you permanently lost the use of your finger!” and “well at least your face won’t be that wasy forever. Let’s hope it doesn’t scar.” They seem to regard these temporary injuries as a disability simulation of sorts and are reassuting me that I won’t continue to be this impaired or have this reduced functionality only because my injuries will heal.

I, on the other hand, feel that if these injuries were permanent disabilities, I’d have a lot easier time dealing with them. The problems I’m having are largely because it is a new situation for me and my habits and unconscious behaviours are all based on my assumption that my left index finger works fine. I haven’t had any time to develop the mental awareness or the physical abilities to compensate for the problems with that finger – if the other muscles in my left hand were more used to typing without that finger, I’m sure I’d be able to type more quickly and without as much pain in my left hand. Similarly, if my brain could remember that bumping left index finger leads to extreme pain, I wouldn’t have banged it against the car door every single time and I’d buy a purse with more organization capacity so I didn’t have to dig through it with both hands to find anything.

This isn’t to say that having this injury be permanent wouldn’t have long-term effects on my functional capacity. It just means that the functional effects of my temporary injury are in no way indicative of my functioning or my abilities were this a permanent disability. And that having this injury doesn’t teach me anything about what it would be like to have this disability.

The one aspect that has been eye opening for me is the demonstration of how entitled people feel to talk to you about visible injuries or disabilities. My finger isn’t that noticeable and I’m wearing long sleeves because of the weather, so only my facial injuries are visible – and boy are they visible. Even when wearing sunglasses to cover the worst of the bruised and swollen eye, the puncture wounds on my cheek are prominent. And in the day and a half since I was injured, I have been asked to explain “what’s up with my face” by virtually every stranger I’ve encountered. So much so that I’ve already started making up stories (my favorite: “I was being attacked by a vampire but I managed to deflect him so he bit my cheek instead of my neck.”). The feeling that my body is fodder for them to gawk at and demand explanations for is new to me, as my disabilities are usually not visible and I’m used to passing in public. While I don’t pretend this temporary experience in any way lets me know what it would be like to live as a person with a permanent visible disability, this is the only aspect of my injury experience that I feel is at all relevant to understanding the experience of disability.