Transcription with description follows.
People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.
Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.
But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.
These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.[1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.]
At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.
I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.
As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!
I think there’s so much here to talk about. Please, tell me your thoughts.
Content Note: While this post isn’t going to talk about sex at all, and it’s only going to briefly touch on some things that get grouped under “kinky” sexuality, I would recommend against it being read at work.
Here is an image to give you a chance to back out! (Image is totally safe for work.)
Image Description: A sign that reads “Wheelchairs and Strollers Please Detour Through Bears”
Here’s the jump!
Continue reading My Experiences with Disability & The Kink Community
WARNING: This post is likely NSFW, and talks about sex.
If you do not want to know anything about my sex life, you don’t want to read it.
I was recently interviewed for an article about sex & disability.
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.
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?
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.
Everything healed up
but in a very strange way
when it was very obvious
that something was very wrong with my face
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.]
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.
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
Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.
I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)
Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.
They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.
We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?
I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.
He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.
In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.
I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”
Cross-posted at Impermanent Records.
Of course! That is, some of us do, but there’s nothing about disability that means we don’t ever have sex. As with any other group in society, some of us are sexual and some of us are asexual. Some of us are celibate, some of us are in steady sexual relationships, some of us like a one night stand. Which is to say, we’re far from being a sexual monolith! (… as it were.)
The reason PWD aren’t considered as sexual – particularly “visibly” disabled PWD – is that the idea of “the perfect body” as the only sexual body dominates popular discourse. Additionally, we have the stereotypes of PWD as pathetic or stoic, far removed from the sexual. Not to mention the fact that disabled people tend to be shoved away from the general public. This idea is not due to some inherent aspect of disability that negates sexuality, it’s just bigotry. The lack of recognition for PWDs’ sexuality has meant, less so in recent years, that a lot of PWD aren’t given appropriate sex education. Without proper sex ed, it’s harder to take charge of one’s own sexual life and body. This lack of information has its role in enabling the high rates of abuse against PWD. There is a lot of horrific policing of the bodies and sexuality of disabled women in particular, as you’ll read about on this blog in less 101-type discussions.
When those PWD who are sexual are seen as such, it’s often to the exclusion of many modes of sexuality. Remember, disabled people, like non-disabled people, have all sorts of sexualities that can change throughout life. We can be queer and straight, poly and mono, kinky and vanilla (which is not to say that all of those are exclusively sexual identities, either). Not everyone is into or can have PIV intercourse, and all kinds of sexual activity are as legitimate as the participants consider them to be. And, of course, implicit in the question ‘Do disabled people have sex?’ is the question ‘Do disabled people have partnered sex?’ As such, that’s the question I’ve been answering, but it’s best not to forget that masturbation is fun, too!
There’s another myth that PWD only have sex with other PWD. This is based on the assumption that no one “normal” would want to have sex with someone who doesn’t fit into rigid norms. Sex isn’t just for young, white, abled, straight couples, no matter what TV tells you. Of course, the idea that sex with disabled people isn’t ideal means that it’s sometimes harder for disabled people to find sexual partners. To which I say, people with that kind of bigoted attitude are missing out on some really great sex.
Disability often influences a person’s sex life, as it does many other aspects of life. (Not to mention framing disability as this overarching barrier to sex obscures the fact that, you know, other factors have their role in how and if a person is sexual.) Pain or fatigue or physical features, for instance, can have an impact, but that doesn’t mean PWD are never sexual. Because there are so many different types of disability – and some people have multiple disabilities – there are lots of different changes PWD and their partners might make to make sex possible, easier or just more fun. This could include clear communication when a partner has an anxiety disorder, assessing which positions are most comfortable with a particular body shape, adapting sex toys for people with limited motor control and a whole range of things.
Disabled people’s sexualities exist, and are quite as varied and wonderful as those of non-disabled people.