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Guest Post: Book Review: Everything Beautiful

Karen Healey is an able-bodied author of young adult literature and a PhD candidate at the University of Melbourne. You can read more of her musings on reading, baking, and social justice at her blog, Attention Rebellious Jezebels.

Everything Beautiful, Simmone Howell. Pan.

I am the maniac behind the wheel of a stolen dune buggy. Dylan Luck is at my side. We are tearing up the desert, searching for proof of God.

Riley Rose’s mother died two years ago, when she was fourteen, and everything went to hell. Now her father and her new stepmother have sent her to a week-long camp at Sprit Ranch, AKA the Palace of Suckdom.

I decided I would pack only frivolous things: eyelash curlers and costume jewellery and little jars of antipasto. If I had to go to Christian camp then I would go as a plague. I would be more like Chloe: outrageous and obnoxious — call me a plus-size glass of sin! It wasn’t until Melbourne was wavering behind us like a bad watercolour that reality hit. As the kilometres ticked I sank into my seat and practiced holding my breath. On a silo just past Horsham someone had painted an escape button. ESC – ten feet high against a concrete sky. I almost asked Dad to stop the car so I could press it.

There, she meets Dylan, who used to be a bullying jackass before the accident that cost the use of his legs. Now he’s just sort of a jackass, and his old Bible Camp friends don’t seem to know how to act around him in the chair.

Craig came forward. “Here you go, dude.” He clamped a hand on Dylan’s shoulder and handed him a shiny bundle. Dylan was slow to unfold it, too slow for Craig, who moved across and shook it out, and held it up for display. It was a vest identical to his. Craig draped it over Dylan’s shoulders and announced: “So this year there’s two Youth Leaders!” … I whistled and threw my lavender sprigs at the stage. A flower landed on Dylan’s chest. He watched it fall to his lap and then he picked it up. I noticed his cross then: thick and silver, hanging on a thin leather string. As he held the sprig of lavender, his face changed and I had a sudden flash that he looked on the outside how I felt on the inside: Lost. Moody. Superior. Charged.

Dylan smelled the flower and stared straight at me. Then he put it in his mouth and ate it.

HIJINKS ENSUE. Hijinks include [minor spoilers!] (skip)
Daring Escapes, Heartfelt Confessions, makeovers, loveable doped-up friends, the theft of a shroud, Mean (Christian) Girls who turn out to be real girls, and one of the sweetest, hottest, most beautiful love scenes I’ve read anywhere

I LOVE this book. I love that the two main characters have bodies deemed unacceptable by Western standards – Dylan because he’s a wheelchair user, Riley because she’s fat – and yet are developed as a romantic and sexy pair. I love that Dylan is not a Ministering Angel Who Inspires Us All, but a complex person who’s a moody jerk a lot of the time, but charming and wickedly entertaining a lot of the rest. Howell manages to pack a good deal of wheelchair etiquette and disability awareness into the narrative, but not preachily; mostly it comes as Dylan sarcastically noting something that Riley’s never had to consider before.

In fact, every person in this book, however quickly drawn, comes across as a portrait, not a caricature. Characterisation is Howell’s great strength. No! It’s dialogue. No! It’s humour. No! It’s pace.

Wait, maybe it’s description:

The sun dipped. The sky became the near-night blue of shadows and stolen moments. Now the ground was firmer. The land had flattened out and Dylan’s tracks were no longer visible. Here and there, I found little reflecting pools, and then at last I saw one great big one. The lake was a giant mirror reflecting a crazy-paving of tree and sky. Up ahead I saw a monster gum tree with wandering roots that looked like they’d waded right into the water and thought, fuck it, let’s stop here. Dylan must have thought the same thing. He was in his chair, facing the water, a little way back from the edge.

Everything Beautiful is. Highly recommended. I don’t know where it’s available outside Australia, but the Book Depository has it here, although I have Thoughts on that particular cover.

Guest Post: Disability and Aging

by Laurie Toby Edison and Debbie Notkin
Body Impolitic

Laurie: I blog with Debbie Notkin at “Body Impolitic” where we talk about body image issues in the broadest sense. I’m the mother of two daughters and I live in the Mission in San Francisco. I’ve published two books of my photographs: Women En Large: Images of Fat Nudes (edited and text by Debbie Notkin) and Familiar Men: A Book of Nudes (edited by Debbie Notkin, text by Debbie Notkin and Richard F. Dutcher).

Debbie: Along with my work with Laurie, I’ve has been an in-house and consulting editor of science fiction and fantasy at Tor Books. I help organize WisCon, the world’s first feminist science fiction convention,and I’m chair of the motherboard of the James Tiptree, Jr. Award, supporting science fiction and fantasy that explore and expand gender. My day job is as a contracts manager for a nonfiction publishing company.

We were very pleased to be invited to blog about the intersection between aging and disability, in part because we think it’s a smaller intersection than is generally perceived.

We are 67 and 58, respectively, and both of us are able-bodied, and active. Not because “70 is the new 50” but because our bodies work just fine.

The stereotypical intersection between aging and disability is the cultural expectation that they are the same thing. Whether people are saying “After 40, it’s patch, patch, patch” or just looking surprised if a woman over 50 lifts a 50-pound box, the common assumption is that age and disability are irretrievably linked, just as youth and ability are perceived to be irretrievably linked. While 75-year-old marathon runners and charmingly fragile disabled teenagers both show up as role models, old people who walk to the grocery store and people in their young 20s who are frequently unable to leave their homes because of chronic pain are equally invisible.

Living in our bodies is a day-by-day, minute-by-minute experience. In our experience, and the experience of our friends who are our ages or older, aging does entail additional maintenance time and energy. More small things about our bodies need attention than they did 25 years ago. We go to doctors more often. We have more routine tests. We have excellent memories, but we lose words more often than we used to.

These things, however, are not disabilities. Conflating age and disability is not only dishonest about the realities of aging, it is also disrespectful of the realities of disability. We can both go where we want to go, and get in to the buildings or transit vehicles when we get there. Neither of us is in the kind of pain (physical or mental) that keeps us from living able-bodied lives. To describe our minor aging issues as disabling would be to undercut and undervalue the real disabilities that people live with every day.

At the same time, the stigma of aging (which is partially fear of death and partially the culture’s definition that beauty must be youthful) puts a disturbing spin on diseases and conditions which are associated with aging. If someone over 60 has mild to moderate arthritis, almost everyone (including her) will view it as evidence of her body’s degeneration and eventual demise, while if someone under 40 has mild to moderate arthritis, it will be just something she has to live with, and not evidence that she’s falling apart. This distinction is so endemic in the culture that one of the major medical problems with aging is that people expect their aches and pains to be permanent, and thus don’t address them. One reason people disguise some of the things that happen to them as they age, just people who can sometimes disguise their disabilities, is that we are treated so differently in the world if we tell the truth about our bodies.

As fat activists, we’ve known for years that a fat person should always ask a doctor “What do you advise your thin patients with this condition?” Similarly, an older person should always ask a doctor, “What do you advise your young patients with this condition?”

Do disabled people experience the flip side of this stigma? Not being disabled ourselves, we can’t speak to that, but readers of this blog surely can. We’d like to know: Does being disabled sometimes get transformed into being treated as if you were aging? And if so, how does that work?

***

It comes down to rejecting stereotypes: the two stereotypes of aging are the ever-increasing decrepitude and incapacity on the one hand and the cheerful, active grandparents in the Depends commercials on the other hand. Like stereotypes of disability, or of women, or of people of color, these are not true. The truth is much more layered, complicated, and different for every individual.

Guest Post: Hanging Up the Cane

Lis is a 22-year-old university student from Western Canada. She studies psychology, and is currently working at a school for at-risk inner-city youth. In her free time, she writes fanfiction and participates in the Society for Creative Anachronism.

The first time I held my cane, I cried.

It wasn’t a feeling I expected, to be honest. I’d been fired the week before from a job I enjoyed, for telling my employer I was in too much pain to stand for the entire shift, but things were coming out on my side. I had all my friends and family supporting me, and I’d found enough self-esteem to file a complaint with the provincial Human Rights Commission, alleging discrimination on the basis of disability. It was time, in my mind, to give up beating around the bush.

I’d been raised by parents who lovingly ignored my seemingly minor birth defects, who didn’t want to stigmatize me any further than a Gifted girl in public school could be. They felt that letting me wear normal shoes was the least they could do. When a nagging ache formed in my right knee and hip in my teens, I tried to ignore it and the fact that it wasn’t going away. I was twenty before I went to a podiatrist, who didn’t have to do more than examine my hips and spine when I told him I was in pain before snorting in disbelief and saying, “Yeah, no wonder.”

My right leg is five and a half centimetres shorter than my left, with the discrepancy fairly evenly distributed between my femur and tibia. It’s the kind of thing only the tailors who hem my pants notice, when they call my house anxiously asking me to come in for a second fitting in case they made a mistake.

But I was sick of living in pain, and after I’d been fired for requesting a stool it didn’t feel worth denying my pain anymore to look abled, so I went out to the Mobility Aids aisle of the local London Drugs. A fellow fanfic writer who used a cane had told me what to look for: adjustable, orthopedic, and unrepentant. The one I picked off the rack was a vivid aqua.

Then I cried holding it in my hands, because I couldn’t pretend anymore that I wasn’t disabled.

After that was over, I went down to Stationery for a pack of Sandylion stickers, made my purchase, and sat outside that drugstore wiping the tears from my face and plastering the cane with pink and purple butterflies.

How do I say what that cane meant to me? None of the abled people I’ve met understand it with anything but pity. I’ve always had low self-esteem and what my psychologist later diagnosed as social anxiety, a terror of asking that my needs be met, of attracting unwanted public attention. Now I had a public declaration of my needs, and it was bright blue. The cane did some of my talking for me, so I became able to stutter a request for a seat on the bus, or ask not to walk long distances. I was attracting the sidelong glances and whispers I’d always feared, but all they made me do now was grip my cane a little harder and stare back at them. I knew I was in the right. They knew it, too, because they always glanced away.

How can I explain that after years of living in pain to be what was expected of me, that cane taught me to say I want and I need and I deserve? That it was never something I was bound by; that it gave me the ability to walk further, stand longer, move quicker than I would before? That I missed it when it wasn’t in my hand?

Society marginalizes disabled bodies and takes away their sexual agency, but being visibly disabled helped me find mine. I’d always felt anxious about my body, about being attractive, about being good enough: I always chided myself for not reaching some nebulous ideal. The great lie I had been able to believe when I was abled was that perfection was achievable: that if I only said and did the right things, I’d escape criticism from myself and others. It was in facing criticism and dismissal that I learned I’d been playing a mug’s game. The point wasn’t to make other people happy; my body didn’t and couldn’t exist to meet their standards. The only standard I could meet was mine. I used to be mousy, deliberately homely, as if my unfitted jeans and baggy shirts said, I quit, don’t criticize me for not being sexy. I wasn’t trying anyway. I was able to use the invisbility cloak of disability to begin to experiment with femininity, with ornamentation, without needing to be perfect. I could wear a low-cut shirt, I reasoned, because I’d have my cane. Nobody would look at me anyway.

(Oh, but it surprised me, the first time somebody looked anyway.)

Being disabled meant, for the first time, having the ability to talk about my body and my frustrations with it without judging it as bad. It meant that I, with all my flaws visible and invisible, was still worthy. That I still possessed dignity. That I was still human, no matter whose standards I failed to meet.

I don’t know how to explain any of this. I don’t know how to respond when I walk into work now, freely and unassisted, and have a coworker say, “Hey, you aren’t using your cane! That’s fantastic!”

The orthotic lift I started using a year ago finally stopped hurting, enough that a slight increase in height at the end of September took away the pain in my knee within two weeks, which got rid of my need for the cane. My ambient pain has at least halved. I’m not relying on prescription painkillers to get through my day. I can climb stairs. I’m beginning to hope I can even fence again. After so long living with pain I didn’t think would ever go away, I almost don’t know how I feel. I guess I’m happy. I’m cured, right? I’m enjoying my body again. I definitely don’t miss the pale, persistent ache in the shoulder of my caning arm that no height adjustment could completely banish. I ran to my car last week, just because I can do that now.

My cane still hasn’t moved from its habitual place, on the floor of my car between the seat and the door. I don’t take it out to use it anymore, haven’t touched it for the last two weeks, but I can’t bring myself to hang it up. Sure, part of me’s waiting for the honeymoon to end and the pain to come back at any moment, but that’s not it. That cane has been a friend to me. It’s been part of my voice, my statement about who I am, and a lack of apology about being flawed in public. It’s helped me move, let me go places, allowed me to function. It has been a source of succor to me in my hour of need, and I find it as hard to cast aside now as it was to pick up in the first place.

What I really want to say to the well-meaning people who wish me health and happiness is, it isn’t about the cane. It wasn’t about receiving pity from people in public for being disabled. It wasn’t about the looks or the whispers. I was in pain that disabled me from truly living for years before I picked that thing up. It was never about the cane.

It was about me.

Guest Post: Puppies and Pills Part 1

About thetroubleis: Thetroubleis is a 19 year old with bipolar disorder, social anxiety disorder, generalized anxiety disorder and dyspraxia. She’s a WOC who is also a transracial adoptee and pansexual/queer, depending on how she’s feeling that day. She enjoys knitting, video games and is a music geek.

How I came to path of getting a service dog* was a long, strange journey. My experiences are my own and by no means represent the entire service dog community. My country and state laws are most likely different from some readers as well, so I’m only writing from my own perspective.

I’ve been bipolar since I was child along with my other disabilities, so I don’t remember being normal. I’ve always just been me. I am my normal. Although my other illnesses were diagnosed latter, looking back i can see how they impacted my child and now, how they affect my adulthood.

In junior year of high school, I was reading up on dog training, because I thought that might be something I’d want to do as a job. I’ve always like dogs, they don’t judge me and my Samoyed Kesha loved me unconditionally. One day I came across the topic of service dogs and was so amazed by them. I put the thought of them away in my mind until I read across the concept of psychiatric servicee dogs.

At first, I was skeptical. How could I dog help someone like me? I thought that service dogs were only for people with “real” disabilities. My mental illness wasn’t disabling, was it? Just because I couldn’t go out in public alone or deal with crowds didn’t mean I was disabled. Loud noises and lighting hurting and causing melt down was just part of who I was. It took me some time to to come around to the idea.

When I realized all the way in which I dog could help me, I read and read. Anything with even a small mention of service dogs was worth reading to me. I came up with a list of tasks based on my symtoms and things a dog could do the help them. I was ready.

Sadly, service dogs, especially types that are very new are expense. Psychiatric service dog are pretty new on the scene and the one program I had found in my state that trained them had closed. I was crushed. I tried to brush it off, because I didn’t have the money for a dog anyway. That was about to change.

I headed off to my first year of college and did badly after being cut off from my medication for a time, along with personal problems. I was called back home several times, because my parents had decided to sue my former high school for discriminating against me. They choose to settle.

My money problems were solved! Now where was I going to get a dog? I know it was best to buy from a breeder with service dog lines because even though some shelter and rescue dogs work out as service dogs, the chances of them washing out is much higher. I knew I’d have a hard time with my dog washing out, so I wanted to lower that chance as much as possible.

I started hanging out on Dogster.com and met a psychiatric service dog handler named Veronica who shared a disability with me. She was using a pit bull Weimriner mix as a service dog, but the dog was getting older and had to retire. She had picked a Standard Poodle to train as her next service dog and although I wasn’t partial to the breed, I went and checked out the breeder.

He was so nice. His wife friend were both service dog users, so he knew so much. We talked about what I was looking for in a dog and what tasks I wanted done. He said he thought I’d be a great home for one of his puppies and I put down a deposit and waited.

Sadly, with my puppy being in California and me and Maine, it was hard to coordinate a proper short flight for the puppy. He was already going to keep Figaro for a few extra weeks to get him used to the crate, but I ended up not meeting my dear boy until he was 4 months old. We ended up driving all the way to Boston to get him, but it was the best, safest flight for him, so I didn’t mind.

I had to finish up at school before we could commence training, so he went home with my parents, three hours away. When I finally came home, he took right to me. He’s was lovely boy, very intent on pleasing me. Teaching him was pretty easy, even for a novice like me.

I found another service dog school, one that helped owners train their own dogs. We signed right up. They have been an invaluable resource and i couldn’t to all I have without them.

Figaro and I were a team, the very best of friends. I spent that summer just bonding with him and the best thing happened. He started to alert to my panic attacks before they went full blown. I had been hoping he would, but hadn’t expected it. When I realized what was going on, I was ecstatic. He had his other tasks to make him a service dog, but this, the alerting was so helpful. My bipolar disorder is extremely rapid cycling and he started to alert me to that, as well as hair plucking. I hadn’t fully realized what a smart dog he was.

This partnership was the best thing I have ever done for me. I still take my pills and still go to see my doctors, but having a service dog in training is a big help. Although Figaro meets the legal definition of service dog, I only call him such in legal situations because his public access behavior isn’t where I would like it right now. Thus, he isn’t with me in public unless it’s a training exercise. That’s okay though, because I stay home for the most part. It’s nice and I have to admit having something need me is pretty great too. It’s good to not fail at something, to have purpose.

Next time, I’ll be writing about the public and service dog community.

* I’m using the United States of America’s of service dog and the state of Maine’s definition of service dog in this post. The USA’s definition is as follows:

“Service animal means any guide dog, signal dog, or other animal individually trained to do work or perform tasks for the benefit of an individual with a disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals with impaired hearing to intruders or sounds, providing minimal protection or rescue work, pulling a wheelchair, or fetching dropped items.”

The state of Maine’s definition is

“Service animal” means:
A. Any animal that has been determined necessary to mitigate the effects of a physical or mental disability by a physician, psychologist, physician’s assistant, nurse practitioner or licensed social worker; or
B. Any animal individually trained to do work or perform tasks for the benefit of an individual with a physical or mental disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals who are deaf or hard of hearing to intruders or sounds, providing reasonable protection or rescue work, pulling a wheelchair or fetching dropped items.

Guest Post: Learning to Write About Disability

Mouthyb is an MFA student, majoring in nonfiction. She teaches first year students writing and second year students creative writing. In February of 2010, she will apply to PhD programs to study the effect of class discrimination in the college classroom. She is too excited to spit at the thought of a longitudinal study of the ways poor students are sloughed from the academy, so that she can put together a series of pedagogical suggestions. Someday, mouthyb plans to put together an entire department designed to study the intersectionalities of class, but she will never leave the classroom if she can help it because that’s where the good stuff happens.

This is my first post for FWD, although I occasionally hang out at Shakesville and other feminist blogs. When I received an email invitation to write for this blog, I sat down to plan out a set of entries on the sexualization of disabled and poor women’s bodies and promptly discovered something new to me. I’ve spent the last four years writing about child abuse, domestic violence, about being a sex worker, being queer and poly, about class and academia. I’ve turned those pieces in to workshop and sat through hostile and cruel critiques, and gone back and done it again because I honestly believe that these stories need to be told.

But writing about my own disabilities is scarier for me than any coming out I’ve done before because of the way disability is viewed. I went through 5 drafts in 3 days and kept banging my head against the walls. Which told me that this is what I needed to write first.

When I mention CPTSD, my disability, I get cast by the people around me in ways I find frightening. Even people I would otherwise think of as nice people, people who I work with daily, who have had a chance to see me working productively, seem to draw back from me—as if my disability makes me so different that they can have little in common with me. I become suspicious, because the way we are cast in society means that we are viewed as defective. I am viewed as unable to distinguish reality because my problem is mental. And therefore I am capable of anything.

And capable of nothing.

That’s what scares me the most about talking about disability. It’s being reduced to someone who is so broken that they are capable of nothing. And that’s exactly why I mean to talk about it. Because, like the other stories I write, talking about disability is a way to reclaim that agency. To demand and demonstrate that my disability does not mean that I am reduced to damage.

Guest Post: Cerebral Palsy Humor? Not so Much.

Esté Yarmosh has Cerebral Palsy. She holds a B.A. in English from Eastern Connecticut State University and is currently studying for her Master of Arts degree in English at Simmons College. Her previous guest post, Disability Dismissed, was published in October.

I was surfing the Internet recently for (good-natured of course, not mean-spirited) humor about disabilities, particularly in the form of graphics and slogans. I found the website Café Press.com, which sells t-shirts, hats, and other items with funny and clever (I suppose) sayings and images on them. I was curious to see what would appear when I searched for “disabled” on the website. I found a lot of what I thought were amusing items, some with very suggestive slogans and pictures, but I laughed at them anyway. We’re aware that disability is a serious issue in our lives, but it can’t be too bad to sometimes laugh at certain things related to disability.

I wanted to get more specific in my website search, so I typed in “Cerebral Palsy,” which is the condition I have. When the results came up, I started reading through them and I was deeply offended. The graphics were very depressing in the way they perpetrated stereotypes about disability: the charity case; attempting to find a cure; let’s make friends with the different kid, etc. The funny thing is whoever designed these images and phrases (they were clearly able-bodied) got the facts about CP completely screwed up.

Cerebral Palsy is life-long, yes, but it’s a non-progressive condition, so a cure can’t be found for it – claiming you’re trying to do that is simply absurd. Also, I found a graphic which stated, “Cerebral Palsy Survivor,” which angered me because CP is not a chronic illness; and besides, people with disabilities are trying very hard (and have been for a long time) to reduce the importance and influence of the so-called medical model on able-bodied thinking and even more importantly, in our own lives. We are also trying to rid ourselves of the long-held stereotype of the charity/pity case, one of the most damaging stereotypes about us that has existed. It is all too obvious that it still exists about Cerebral Palsy through images such as those on Café Press.com: a teddy bear in a stocking, with words next to it which read, “all I want for Christmas is a cure.” The sentimentality and maudlin nature (which is such a component of the charity case stereotype) of the graphic made me cringe. It sets us back at least one-hundred years in terms of progress; and moreover, the slogan is completely wrong about CP, because as I said it is not an illness or a disease, so a cure will never be produced – knowledge of that is not supposed to leave somebody in despair; it is just the way it is. In other words, talk of cures for CP is irrelevant and ridiculous. I should know about Cerebral Palsy, because it is part of me.

It is very unsettling to me to think that items like this teddy bear shirt are continually created and then bought and worn by an ill-informed, naive and/or idealistic (most likely able-bodied) public who are wooed by a sentimental, repressive message which is totally fabricated and is based on thousands of years of disability stereotypes. I still want my Cerebral Palsy humor!

Guest Post: Sex and Scoliosis

This is a Guest Post by Atlasien. It was originally published here.

I’m a multiracial Asian-American woman, Southerner, third-culture kid and mommyblogger. I’ve been living in the Atlanta area for more than a decade now. I mainly blog about race and foster care adoption. My husband and I have a 7-year-old son that we adopted as an older child. I enjoy this blog, and I’ve learned a lot of important stuff about disability issues by reading here.

What does scoliosis have to do with sex?

There are a lot of connections. I guess I’ll need to start by explaining scoliosis. It’s a common disorder, but one that is often very misunderstood by the general public, as well as many non-orthopedic doctors. Most people vaguely remember a scoliosis check from their school days. Sometimes the kids are lined up in a row, and told to take off their shirts and bend over while a medical professional inspects them from the back. The experience is obviously rather humiliating and tends to cause a lot of nervous laughter.

Scoliosis — a sideways, left-right asymmetry of the spine — is the most common form of spinal deformity. It can also be accompanied by other forms of spinal deformity, like kyphosis (AKA hunchback) and extreme lordosis (AKA swayback). It sometimes comes as a package deal along with disorders of connective tissue, or with cerebral palsy and spinal bifida. In those cases, scoliosis is often diagnosed at a very early age.

The other kind of scoliosis, the much more common kind, seems to come out of nowhere. It’s known as adolescent idiopathic scoliosis or AIS. “Idiopathic” is from the same Greek root as “idiot” and basically means “we have no idea what causes it.” Though recent research has shown that it’s actually genetic, and they’ve even tracked down the genetic location (but only if you’re white, which is bizarre, because there isn’t any significant racial/ethnic difference in prevalence rate). Someone with this kind of scoliosis (usually a girl, as the incidence of more serious curves among women is 7-10 times that of men) is born with a normal-looking spine. Before puberty, the spine begins to bend and curve. Maybe it stays there… maybe it gets worse through puberty. Then maybe it stays there, or maybe it gets a lot worse close to menopause. Without major surgery, it’s essentially a one way road. In scoliosis vocabulary, when curves get worse, it’s called “progression”. “Progression” is bad. Arresting progression is good.

According to this NIH resource, “Of every 1,000 children, 3 to 5 develop spinal curves that are considered large enough to need treatment.” If you adjust for sex, the rate climbs up to almost 1% of all girls. I don’t know of any source that says actually how many girls receive treatment of which types. Treatment means to watch, take lots of x-rays, determine progression, and if it looks like progression is, well, progressing, to brace. Or in very serious cases, go directly to spinal fusion.

A pre-teen girl, front and back view, with her face obscured.  She has a metal brace that has one rod running up the front to a metal collar, and two rods in the back.  There is a fiberglass girdle across the abdomen and down to the hips.  There is a strap hooking to both sides of the metal rod in the front.  Descriptive text provided by Don.

That’s the “Milwaukee” variant of brace. It’s the kind I had. It’s made from hard plastic and steel. It’s expensive, ugly, frightening, and extremely uncomfortable. The family nickname for my brace was “The Iron Maiden”. You can climb into it and strap it on and off, and adjustments of the screws will accommodate changing body shape during puberty. I think you’re supposed to wear it until a few years past puberty, when your spine growth finally halts. The brace is an old form of treatment and it’s shown to be moderately effective at arresting progression.

Three images of the back of a young woman.  In each, there is an obvious curvature of her spine.  It's an S-style curve.  The middle portion of her back, around the shoulder blades, is off-set to the right, while the shoulders and hips line up relatively evenly.  Descriptive text by Don.

Many girls experience horror and anger when they find out what bracing is going to mean for their lives, and that it won’t even fix them, it will just probably keep them from getting any worse.

It was easier for me to accept my fate. First of all, my mother also has idiopathic scoliosis, and her curve was fairly serious. Hers is comparable to the woman pictured above. She had not been treated as a girl, and her scoliosis had slowly progressed as she went into middle age. She eventually had a spinal fusion — two long steel rods screwed into her spine — and was in the hospital for two weeks. So I had a strong motivation to make sure my curve didn’t progress as far as my mother’s. She was also a positive role model for me. I saw her as an active, glamorous woman who refused to be limited by scoliosis. I tried to adopt the same stoic attitude toward my own scoliosis. Second of all, my orthopedist said it was OK to only wear my brace 12 hours a day, which meant I slept in it, but I didn’t have to wear it to school. I think he may have subscribed to the philosophy that although the brace should really be worn 23 hours a day, there’s so much social stigma attached to it that many girls rebel, and won’t wear it at all, whereas a private bracing regimen has more likelihood of consistent follow-through.

I don’t know if it would have made school any worse. I’ve written before about the extensive racist abuse, and sexualized racist abuse, I got in late elementary and middle school.

I was harassed so much in the locker room my first year of middle school that I refused to change my clothes at all. P.E. was a living nightmare full of verbal attacks and physical threats from larger girls. I spent much of my time desperately thinking of ways I could get a medical excuse. Unfortunately, aside from my scoliosis, I was healthy as a horse. I refused to participate in activities anyway, and sat with the asthma-sidelined section. I’m still bitter about this experience because it taught me to associate healthy athleticism with emotional trauma and racist bullying. Maybe if I’d had my brace on, I could have gotten my coveted medical excuse.

It was something I never, ever thought of at the time, though. The orthopedist’s word was the word of law. And the brace was something to be hidden. I think this is a common tendency among brace-wearers. Girls that age don’t want to be seen in a brace. For photos, they’ll take off the brace. If they’re told to wear it to school, they’re mocked and stared at. At the time, I considered myself very lucky that I was able to hide my brace from other kids my age.

I don’t know much about disability theory and disablism, but I’ve been reading through blogs about it, and it’s very interesting in relation to scoliosis. I don’t identify as a disabled person/person with disabilities, and I don’t think many other people with idiopathic scoliosis do. But many of us have also gone through an intensely emotional adolescent period where we’re viewed as disabled.

One of the hallmarks of disablism is that it strips away sexuality. The prejudice against disabled people includes thinking they are not supposed to exist sexually, have sexual desire or be desired.

Being braced means going through puberty strapped and screwed in to a weird exoskeleton that incarnates the negation and emprisonment of your sexuality. Your breasts and hips are starting to grow. They might start to bump painfully against the brace. So you have to visit the doctor — often an older man — who adjusts your screws to accommodate your new growth.

The brace seems anti-sexual, but it also has positive sexual connotations. The light at the end of the dark tunnel is that the brace will “keep you normal”. You’ll get through puberty and enter into sexually desirable womanhood without too much spinal deformity… the brace will preserve you. The brace probably becomes the most significant physical object in your life, for good and for evil.

I certainly didn’t receive any counseling about my scoliosis. I don’t know if it’s common today to have counseling as part of the bracing process. If it’s not, it should be. Girls who have gone through bracing feel like it’s them, alone, against the world. Although it’s quite a common experience, by medical and social tradition, the disorder is isolated and hidden.

This study showed that bracing doesn’t affect self-image much. However, it also takes places in Sweden, where school environment I’m sure is quite different than in the U.S. This other U.S. study tells a somewhat different story: “Scoliosis was an independent risk factor for suicidal thought, worry and concern over body development, and peer interactions after adjustment. CONCLUSION: Scoliosis is a significant risk factor for psychosocial issues and health-compromising behavior. Gender differences exist in male and female adolescents with scoliosis.”

After bracing, scoliosis, and deformities of the spine in general, become almost invisible. It’s extremely rare to have a spinal deformity so pronounced that anyone can tell by looking at you when you have clothes on. People with idiopathic scoliosis “pass”. People have known me for years, even decades, without knowing I had scoliosis. Then one day they’ll see me in a bathing suit — and not even the first time they saw me in a bathing suit, but maybe the first time they really focused on my back — and they’ll burst out with something like, “OH MY GOD DID YOU KNOW SOMETHING IS REALLY WRONG WITH YOUR SPINE!!

Once it stops being invisible, it’s all of a sudden very, very visible. I guess it’s sort of like shaking hands with someone and suddenly realizing they have six fingers.

If I’m not experiencing any back pain, I rarely think about my scoliosis, although I sometimes worry about my future. Pregnancy is not a risk factor for progression, but menopause is. Right now, my thoracic curve is 36 degrees. If it gets past 40, I might need spinal fusion surgery. This is a mostly safe procedure, but it’s still really scary, and involves weeks in the hospital. Click on the following link if you’ve seen enough David Cronenberg movies that you think you can handle it (link to nightmarish spinal fusion surgery image). Spinal fusion partially reverses the curve, arrests or slows down further progression and relieves chronic pain. You’re still reasonably flexible afterwards, but there are potential complications, and I’m not considering surgery at this stage. If I refused surgery, and my curve happened to progress further, I would start to have more pain and diminished lung capacity. Past 60 degrees, I might start to experience severe and constant pain in my back and/or ribs, and my internal organs would get squeezed together and I might start to have breathing problems. Past 80 degrees I might have lung AND heart problems.

But I don’t stay up night worrying about the risks of progression. Many people have more uncertainty about their medical future than I do. For example, if I had diabetes, I might worry about having a foot amputation.

Since I grew up with scoliosis, it’s taken me a while to understand how it looks from the outside. Aesthetically speaking: not good. We’re conditioned to associate left-right symmetry with health and general well-being. People with moderate scoliosis, like me, often look symmetrical from the front, but asymmetrical from the back, and I suppose that seems eerie and perhaps even deceptive and sneaky. There’s a lot of really negative associations in popular culture (e.g. Hunchback of Notre Dame). When mean-spirited people do “retard” imitations they’ll often hunch up one shoulder and stagger in order to simulate a deformed spine.

I don’t talk about scoliosis casually because a) I don’t have any major health problems because of it, so there’s not that much to talk about b) I’m afraid of it being used against me. I’ll put it on medical history forms when I know I can be assured of privacy. It was used against me recently when I applied for private disability insurance. I thought it would be a good idea to have a separate private policy in case I lost my job for any reason. I did a ton of research, spent a lot of time talking with the salesman, and ended up with a quote that specifically excluded anything going wrong with my reproductive system AND my back. I changed my mind and decided it wasn’t worth buying since so much of my body was apparently un-insurable. They excluded my ENTIRE BACK. Hypothetically speaking, if I got in a minor car accident, and as a result developed the exact same kind of back problems that anyone without scoliosis would develop, nothing would be covered. What a terrible deal. No thanks!

The health implications of my scoliosis are not that extreme, and I don’t need any accommodations to perform any major life activities, which is why I don’t consider myself disabled.

– I have foot pain in my arch if I don’t wear comfortable shoes. I can wear platforms, but I can’t wear high heels.
– I have to be a bit careful doing things like yoga and pilates.
– I have to stay reasonably active in order to be 100% pain-free. When I get too sedentary, I start having back pain and rib pain. If I ever had an illness that forced me to rest all the time, I’d be in big trouble. Exercise and stretching are highly effective for scoliosis back pain. Other options I would consider to control pain if it ever got worse include drugs, physical therapy and adult braces. There are a gazillion alternative health “cures” for scoliosis back pain suffering, but they strike me as being of very dubious efficacy.
– I have to watch my posture
– I have to watch my weight. Excess weight leads to back pain. Being underweight might be even worse, because being underweight is connected to bone density loss, and people with scoliosis have lower than average bone density anyway.

None of these problems are really unique to scoliosis. Plenty of able-bodied and disabled people have back pain or foot pain.

This link from Eurospine.org sums it up: “Progression of scoliosis can involve an aesthetic problem and lead to functional problems. Respiratory disorders may develop in large curves greater than 80 [degrees]. Nonetheless, the mortality rates and vital prognosis in individuals with scoliosis are comparable to those of the general population.”

It’s the “aesthetic problem” of scoliosis that’s unique. Like I mentioned before, left-right symmetry is wound up with definitions of health and beauty across many different cultures. People like me are aware of this on a subconscious or barely conscious level. 99.99% of the time I forget that I don’t fit that symmetrical standard. Every so often I’m reminded, and it feels a bit painful. There are subtle psychological effects. Vague feelings of being a secret curved impostor in a straight-backed world. Times when I feel like my spine is an enemy working against me… times when it hurts to breathe and the pain makes me feel angry at my spreading rib bones, and I wish I could reach inside of myself and squeeze them back into place. Sometimes I’m bitter about the inches of height I lost to scoliosis.

Back to sex. Even without bracing, there’s still a sexual paradox when it comes to scoliosis. Have you ever seen a picture of a woman with scoliosis and/or kyphosis that was not anonymous, depersonalized, clinical, grim and depressing? Like the photos I included above? Scoliosis is profoundly unsexy.

On the other hand, when women pose provocatively, they often throw one hip to the side and put one shoulder forward.Why is that pose sexy? Maybe it makes us look femininely defenseless and vulnerable, as opposed to a masculine, stick straight pose. That’s going along with a typical sexist definition of “femininity”. There’s another less sexist possibility… the pose is also highlighting the flexibility of the spine. So in that sense, the woman is showing off her body’s capacity by bending in a certain way.

There’s a comic book artist, Rob Liefeld, who was (in)famous starting in the 1980s for drawing unrealistic women. The conventions of drawing women are in comics are easy to criticize, but Liefeld’s stuff is… well…I guess you’d have to see the spinal curvature to believe it.

Iconic Rob Leifeld drawing of a super heroine.  She's posing facing right, turning her head over her shoulder.  She has an impossibly-narrow abdomen, and spine curvature similar to severe lordosis, an inner curve of the spine.  She is not wearing very much clothing.  Description by Don.

That’s supposed to be sexy. For the audience of predominantly young men who made Liefeld very popular, it must have been sexy. This is a funny analysis of the above drawing by a group of women comic book artists:

Take note of Avengelyne’s waist and how it is thinner than her head. Minus the hair. Note how it hangs beneath her ribcage like a suspension bridge, rather than actually supporting the top of her body. (Her torso must be kept afloat by those helium breasts.) Note the scoliosis gone grossly untreated. Note the little leather bags which wouldn’t fit around a normal person’s wrist. Especially note that the artist put her in the most obvious POSE to exaggerate the spine: a profile shot with negative space between her back and arm. That’s correct – our intrepid heroine’s spine would appear yanked. Avengelyne is a SWAYback™.

The humor is partly at my expense. But I can’t help laughing. It’s a highly sexualized image, but not one that I identify with in any way.

But here’s a poster image I ran across that uses stupid sexist humor to make fun of a real woman, and I don’t find it funny at all.

A woman is facing straight on the camera, with her weight obviously all on one side.  She's curved her body to look like an S.  Text reads: Scoliosis: Making an otherwise beautiful girl look pitiful.  Image is from Motivated Photos.com, description by Anna

It really illuminates the double standard that women are subjected to. You’re supposed to be sexy so that you please men. But if it looks like you’re trying TOO hard, men (and other women) will make fun of you. If you don’t wear makeup, you’re a [insert homophobic slur]. Wear too much makeup, you’re a [insert transgender-phobic slur]. Curve your back, look sexy. Curve it too much, it looks like you’re deformed. Argh!

Thanks to my brief readings of disability theory, I realize that making fun of people with spinal deformities isn’t something I should just accept as the natural order of things, especially because this humor is connected to moral judgments of disability. That is, the idea that physical body difference reflects some kind of moral failing. When it comes to scoliosis, I think the general public halfway believes that scoliosis is the fault of the person’s family. There’s a myth that giving young kids backpacks that are too heavy will make their spines curve (totally not true). When people are adults, “she should have had that corrected” is sometimes an assumption. A lot of people don’t realize that the only sure way to even partly reverse a curve is spinal fusion, which also leaves a giant seam-scar running up your back. Another judgment is that a person with scoliosis must be poor. It’s true that I’m very lucky I had access to bracing; if I wasn’t born into a middle-class family in a rich country, my curve would be a lot worse by now. So there are major class differences in scoliosis, but ultimately, we’re all in different positions on the same boat because there is no way to permanently and completely reverse adult scoliosis.

Thanks to flickr, I did actually find some images of scoliosis that I think are beautiful and help affirm positive self-image and sexuality. I wish I’d found a greater variety of body types, but these images are great to start off with. Some are post spinal fusion.

First, here’s the typical clinical picture. It shows everything that’s wrong with the body.

A woman is facing away from the camera, with arrows pointing to various parts of body to describe them.  Head not centered over body.  One shoulder (right) higher.  One shoulder blade (right) higher and possibly more prominent.  Spine obviously curved (to the left).  One hip (left) more prominent.  Unequal gaps between the (left) arm and the trunk.  Description by Anna

Now here are the flickr pictures. They show the open possibility and vitality of a body with scoliosis.

Man with scoliosis facing away from the camera.  Someone has drawn his spine on his back with make up.
black and white photo of a woman facing away from the camera, wearing only a towel or blanket.  Her spine is curved, and her scars are visible.

man facing away from camera.  The photo is in a mirror.  One can see both his scoliosis scars from surgery and his elaborate arm tattoo.

woman facing away from the camera.  She is caught in the middle of dropping an apple behind her back, both arms curved behind her.

woman facing away from the camera.  The image is otherwise in black and white, except for her vivid red hair and lips.  She is wearing a black dress with part of the back cut out.  It clearly shows the curve of her spine.

photo is in black and white of a woman's lower torso, with a pronounced rib-cage and a pierced belly button

woman facing straight on the camera.  She is wearing both a brace, as described above, and a purple corset.

woman facing left from camera, with back facing camera.  She's wearing an back brace, and balancing on a small ball.

It’s heartening to see a bunch of pictures like that. There are more photos at this link.

When I walk, my right hip swivels a bit higher and wider than my left hip. I’ve had people tell me it looks sexy. I’ve had people ask if I’ve hurt my foot. Neither reaction bothers me anymore. The way I walk is just the way I walk. It gets me where I need to go.

Acknowledgements for this post: thanks to Thorn for commenting about this issue, and mentioning how it negatively affected your adoption homestudy due to ignorance on the part of the social worker. Also thanks to Deesha Philyaw on Twitter for mentioning the Judy Blume book about a girl who goes through bracing: Deenie. I wish I’d gotten a chance to read that book when I was a girl, and it sounds really interesting.

Guest Post: Davros, Daleks, and Disability

CapriUni has cerebral palsy. She grew up with, and alongside the Disability Rights movement. She was among the first of her generation to be mainstreamed in education, in starting in the late 1960s, she completed the Masters of Arts program in Creative Writing at SUNY Stony Brook in 1991. And she has been a regular participant in the theatrical and literary endeavor known as The Art Garden for many years. She currently lives in Virginia, where she spends much of her time geeking out on her DreamWidth Journal over the topics of language, disability rights, and general silliness, but not necessarily in that order.

This post was originally written in June 2009.

This post wanders down a primrose path of links — or maybe it makes a daisy chain of links (maybe the all those flowers are fertilized by the BS the essays in these links complain about).


Almost a year ago, I watched again, for the first time in nearly thirty years, Episode Two of Genesis of the Daleks (the one where we first see, and hear, Davros) and wrote this review: I know that this episode predates this PC-ness by about ten years, but still. I tried to articulate how painfully ableist Davros is/was (it might have helped if I’d had the word “ableist” in my vocabulary, back then). But the discussion thread wandered off into Nazism, racism, anti-Semitism, and the internalization of oppression by the oppressed — all are important topics, but Davros’s disability ended up being treated (even by me, woe) as a secondary metaphor for some other issue, and not as an important attribute in its own right (which is another of my long-time pet peeves).

Then, earlier this week, [info]troubleinchina watched Genesis of the Daleks for the first time, and she wrote this review: Davros is not a physically handicapped scientist overcoming his “shortcomings” through technology (the link she posted in that review, btw, to an essay about the cybermen, has been taken down by the author).

In reply to that review, Goldfish (the host of “Blogging Against Disablism Day”) posted this: It would be better if we were represented as a great variety of characters, but Davros did at least have some … spirit.

And she posted this link (from the BBC’s official Disability Culture Blog: “Ouch!”): ReTARDIS: Doctor Who and Disability (written on the eve of NewWho, and expressing the hope that RTD would help Who get beyond its old biases; shall we have a moment of silence for our dashed expectations?).

And finally, I’ve come to the end of my primrose path. For there is one paragraph in this last blog essay clarified for me why I preferred the Daleks before they had Davros as their single, twisted, “Creator”:

To cut a long story short, Davros foresaw that his entire race, the Kaleds, were slowly turning into slimy, green blobs. Being a wheelchair user himself, his solution to this problem was to build mobility aids for everyone to travel around in – a.k.a. the Dalek machines. Now you’ve got to admit, turning your entire race into wheelchair users is quite an extreme way to bring about disability equality!

I realized, when I read this, that I was (partially) incorrect in my original analysis, last June. What’s really promblematic about Davros is not (so much) that his “spiritual disfunction manifests as physical disfunction,” but that he diliberately creates the Daleks to be more disabled than he is. He deliberately erases their capability for empathy and compassion. He expects them to be obedient to his every command, and to be grateful to him, as their creator and their “father.” If Davros’s plans unfolded the way he dreamt them up, he’d be the most able-bodied (comparitively) “Emperor of Skaro.”

So, with Davros in the picture, the Dalek mythos only perpetuates and reinforces the hierarchy of Ability and Personhood. The more able you are, the more you’re a “real” person. If you’re disabled, your role in life is to be obediant and grateful, and the more “severe” your disability is, the more passive and grateful you’re expected to be.

But pre-Davros, in the First and Second Doctor’s eras, the Daleks had created their machine casings over time, and under their own initiative. In the Peter Cushing movie versions of William Hartnell’s Dalek stories (thanks again, [info]gordon_r_d!), the Dalek city is full of color, and art for art’s sake. Even though they’re still evil, they’re portrayed as having a complete culture, and being complete people. So yeah, I find the pre-Davros Daleks to be more interesting.

As for the argument that Terry Nation had to create Davros to give the Daleks some unique history compared to the Cybermen, I’d say that both the Cybermen and Daleks represent the abject fear that the Privileged have of the Oppressed:

“They Hate Us!! And if We Give Them Any Freedom, They Will Bring Us Down to Their Level!!”

The Daleks and Cybermen are “mechanized” selves, who have gradually lost their Personhood as they gradually lost their physical abilities, and compensated for their weakness with technology. This, in itself, makes them morally suspect, at best. What makes them evil is their desire to inflict their reality on the rest of us, “robbing us of our humanity.”

Other modern sci-fi examples of this trope would be, I think, Hitchcock’s The Birds (where humans are punished by the avians for our species-based privilege), and Franklin J. Schaffner’s (director) Planet of the Apes (again, with species privelege, with added thinly disguised race privilege). But this trope goes back much further than the genre of Sci-fi, if you consider the ancient (patriarchal) Greeks’ fear of, and fascination with, the Amazons, and what they did to men.

This fear and fascination probably arises out of the subconscious knowledge that:

  • privilege is arbitrary and more a matter of luck than innate goodness, and
  • the acts committed via this privilege are unjust, but
  • the privilege-holders are so dependent on the power of privilege for their way of life that they equate letting it go with Death.

And of course, this fear completely distorts reality. Birds have no desire to wipe out humans as a species. Nor do Apes wish to own human slaves. Women don’t want to castrate and enslave men.

And the disabled have no desire to inflict their impairments on the able-bodied. Christopher Reeve’s advocacy for “The Cure” made me squrim, but I took no pleasure in his suffering. I was simply distressed when his advocacy, and the celebrity status that fuelled it, drowned out nearly all discussions of civil rights and equality.

[I’ve been writing this post on and off (mostly on) for nearly six hours, now (I thought it was going to be a quickie; I didn’t expect it to be so hard to put into words). It’s time I stopped. Here’s my conclusion:]

Davros is a painful character for me to watch because he represents the fear that the Disabled are full of hatred — both self-loathing and hatred of the able-bodied, and is another example of the fearful trope:

“They Hate Us!! And if We Give Them Any Freedom, They Will Bring Us Down to Their Level!!”

(So We better get Them, before They get Us).

I don’t want to bring you down, able-bodied white men, staring at me from the bed of your pick-up truck,* please don’t stare at me with such virulent hatred.


*I’m remembering an actual time when I was leaving the grocery store with Audrey, my aide. This was when I had the old van, with the slooow wheelchair lift, and I was manuevering to get onto the lift. Meanwhile, there were four red-necky-type white guys hanging out in their truck in the next parking space over. And they were staring at me with such angry expressions, I couldn’t look them in the eye. If I’d been alone, I would have feared for my safety. Yes, this was one moment out of my lifetime, and it was atypical in its extremity. But it still sticks in my mind, and it’s still painful.

ETA November 29: I’m temporarily turning comments off on this post because it’s become some sort of magnet for very strange and repetitive spam. I’ll turn them back on in the future. If you come across this and want to make a comment, please let the mods know.

Guest Ableist Word Profile: Crutch

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Sasha_feather is a science fiction/fantasy fan and anti-oppression activist. She is a contributor to Access Fandom

Dr. Kerry Weaver from the US television show 'ER', a white woman using a forearm crutch, text provided by Sasha Feather
Image: Dr. Kerry Weaver from the US television show ‘ER’, a white woman using a forearm crutch

Has anyone ever told you that you are using something as a crutch? Have you ever used this metaphor yourself as a pejorative?

What do people mean when they use this metaphor?

The metaphor implies that crutches are universally bad and that they prevent the user from moving onto the next stage of development.

There are underlying messages within this attitude that one should rely upon the self and not be using outside help or tools to deal with problems. All of this is ableist, and falls in line with similar prejudices against medications. If you cannot support yourself, well then, there must be something morally wrong with you: this is the message of our ableist society.

Crutches are assistive technology; they are tools. While it is true that tools can sometimes cause harm, tools are not essentially bad. I think most people would agree that tools are good things. Often tools such as crutches are the products of many years of innovation, design, engineering, and human ingenuity. People with disabilities often rely on tools more than fully able-bodied people do to help us navigate and live in the world. Crutches and canes are mainly useful for helping people to walk. They have other uses too. If you watch the US television show “House”, you might observe Dr. House using his cane for a variety of other creative purposes, such as a reaching device.

The metaphor of “crutch” can be reclaimed by using it as a positive metaphor. Some examples of this:

“I appreciated having creative projects to do as a crutch to help me through the grieving process.”

“I handed out fliers at a recent event. They were a good crutch for helping me go up and talk to people I don’t know.”

If you are looking for another metaphor to use for a tool that a person uses for a short time before moving onto the next stage of development, I suggest using “training wheels”.

Guest Post: Disability and Asexuality

Kaz is a German woman in her twenties, currently doing a maths PhD in the UK. She is on the autistic spectrum, stutters, and has been dealing with clinical depression on and off since her teens; she considers all of these disabilities. She is also aromantic-tending-towards-homoromantic asexual and identifies as queer. She blogged as Zailyn at WP for a while, but can now be found at either Dreamwidth or Livejournal, where she writes about fandom, disability, feminism, asexuality, and sometimes even maths.

Kaz’s note: First of all, this is not a 101-level post on either the asexuality or the disability side of things. However, I’m aware that asexuality isn’t really an issue that is on most people’s radars, so to anyone who doesn’t know much about it I suggest you check out AVEN in general and the Wiki in particular before reading or whenever you run into something that doesn’t seem clear.

Mod Note: Kaz & I talked and I’ve put in some links to terms as they come up.

A list.  The header reads: What is your Sexual Orientation?  Typed underneath with check boxes is Heterosexual, Homosexual, Bisexual.  Written in, with a hand-drawn check box, is other.  The check box is filled in next to other

Talking about the intersection of asexuality and disability is pretty difficult, because “asexuality” gets another meaning in disability rights discourse: it’s used to refer to the various stereotypes about disabled people’s sexualities. People do often seem to realise that this is problematic when it’s pointed out to them. However, what not so many people realise off the bat is that it goes beyond just “problematic”.

The stereotypes in question actually consist of a wide variety of things tossed together, some of which are in line with asexuality but many of which seem to have little to do with asexuality or in fact to be entirely opposed to it (I am interested to see how the stereotype of the disabled woman not saying no because she feels lucky anyone wants her is supposed to relate to asexuality, for instance). What they have in common, however, seems to be: denying disabled people their sexual agency and the right to make decisions or have knowledge about their own bodies and sexualities. The stereotypes about disabled people’s sexualities seem quite in line with the common tendency to consider us childlike, helpless and needing to be protected for our own good.

Asexual adults? Are not children. Nor do we (or, at least, should we) lack agency. In fact, the very existence of the asexual movement shows that we are in opposition to a lot of these ideas! We’re organising, we’re campaigning, we’re demanding that our sexual identity should be recognised and considered valid; disabled people are stereotyped to not have a sexual identity at all. (There is a distinction between the lack of a sexual orientation and a sexual orientation incorporating lack of sexual attraction that most people miss, but that is crucially important in this context.) Taking all the stereotypes disabled people get hit with regarding sex and sexuality and claiming that they all boil down to making them like asexual people? Like me? Is something I actually find really offensive.

An example: the desexualisation of disabled people often gets used to justify giving them less extensive sex ed or no sex ed at all compared to abled people. However, saying this is because they’re stereotyped as asexual entirely misses the fact that – asexual people need sex ed too! At the moment, it’s true that a lot of us will probably need it less than most sexual people, but it is still necessary as a large portion of asexuals do end up having sex at some point in their lives. Also, if mainstream comprehensive sex ed ever gets away from the “put the condom on the banana” “tab A slot B” style of sex education and starts talking about things like sexual orientation, explicit consent, how to figure out whether sex is the right decision for you at a certain time, etc. – I’d argue that we need this kind of sex ed more than many sexual people, as being a sexual minority tends to lead to more confusion and needing to figure things out. (There’s a traumatic experience I could have happily avoided if sex ed ran more in this direction.)

Also, using the name of my sexuality for these stereotypes obscures the fact that actually, they have negative effects for me, too. For instance, there is an astounding amount of ableism in the arguments people use to try and invalidate asexuality, ranging from “you should get your hormones checked!” over “that’s a disability, not a sexual orientation” to “you’re just all autistic!” You can imagine how the last one feels to me as an asexual autistic person! Worse, parts of the asexual movement buy into this and will talk about how they’re not autistic, their sexuality is valid – unlike mine, apparently?

…hey, I recognise this argument! But wait a minute, we can’t very well call it stereotyping disabled people as asexual if it’s being used to invalidate the sexualities of asexual people.
Continue reading Guest Post: Disability and Asexuality