BADD 2k10 – sexual dysfunction as disability

05/01/2010 at 7:57 am | Posted in Uncategorized | 10 Comments
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Blogging Against Disablism Day, May 1st 2010

This is my first time participating in Blogging Against Disabilism Day. For this post, I’d like to take a deeper look at an idea that’s been touched upon a few times on this blog before. That is, looking at sexual dysfunction as a disability in and of itself. I though that for this year’s BADD event, we could flesh out this idea and see where it takes us.

Looking at sexual dysfunction as a disability is a very a new idea to me. For the record, this isn’t my original idea – first I heard it from Flora, then Ms. Sexability. (Flora also contributed to this post, so keep reading.) My other hint that there is openness to this idea (at least on the internet) should have been when FWD’s was willing to include this blog on its blogroll.

The other established & more famous ways of looking at sexual dysfunctions are through the medical model and the social construction model. These two models are in conflict, and I believe that they both have positives and negative features. To describe these models very briefly,

The medical model relies on the 4-stage human sexual response cycle (excitement, plateau, orgasm, resolution) established by Masters & Johnson. Disruptions to this cycle are framed as a sexual health problem in an individual, so long as that individual feels personal distress due to the problem. If the individual is bothered by the disruptions, then medical intervention may be warranted. Treatment for sexual dysfunctions may be drugs, devices, therapy, or something else involving a trained professional. In practice getting that treatment isn’t always so easy, and this model doesn’t do a good job of looking at social forces like the individual’s relationship and cultural pressure to stay sexually pure. There is also the potential for abuse of this model, particularly by drug companies, and the medical model tends to treat male sexuality as the default without challenging the origins of what forces shape male sexuality.

The social construction model frames sexual dysfunction (especially female sexual dysfunction) as the product of cultural and relationship problems, like society’s skewed views on sex, women and medicine. If these social problems can be addressed on a larger scale, then theoretically there wouldn’t be many dysfunctions at all because a wider variety of sexual expressions, activities and outcomes would be accepted as on the broad spectrum of normal. So, fewer individuals would experience personal distress. However this model gives off a very strong anti-medicine vibe, and in practice I’ve seen experts and laypersons frame FSD as fake, going so far as to rake people who live with sexual dysfunctions (and their partners) across the coals. Proponents of the social construction model often frame FSD as newly invented and “Fake,” which carries an implicit accusation against women who experience sexual dysfunctions as being foolish, gullible lying fakers.

I’m hoping that looking at sexual dysfunction as a disability will present an opportunity explore similarities and intersections between disability and sexual dysfunction. I also hope that doing so will address some of the shortcomings of both of these models while retaining their positive, potentially helpful features.

However since sexual dysfunction as disability is so new to me, it’s not fully fleshed out yet in my mind. A 1999 Boston medical conference on female sexual dysfunction had many doctors attend to refine & direct the direction of the medical model of FSD for future treatments. Dr. Leonore Tiefer had a group of people to assist with developing the New View of Women’s Sexual Health Problems. I don’t have that kind of authority or manpower. I’m a blogger. I have a blog. I can’t do this alone. So, let’s blog.

For this post, I thought I would start by putting together a bullet point list of some areas to think about and explore. Bullet points because I’m still thinking. I’m open to constructive criticism in comments. (Plz do not be all asking me things like “Well I experience X sexual problem, are you saying I’m disabled?!?!” Because for one thing no I’m not and for another thing that is so not the point.)

Looking at Sexual Dysfunction as Disability

  • The most obvious reason I can think of to look at sexual dysfunction as a disability is for reasons of sexual and/or pelvic pain.
    • Chronic pain falls onto the broad spectrum of disability.
    • Women report feeling sexual and/or pelvic pain more frequently than men.
    • This may include vulvodynia, vulvar vestibulitis, clitorodynia, pelvic floor dysfunction, pudendal neuralgia, cancer, lichens sclerosus, complications from FGC or medical surgery and others. Not everyone who develops one or more of these problems will necessarily live with or be distressed by symptoms for life, and even for those that do it may be possible to manage symptoms. However, for many people, these can be chronic problems with no clear resolution.
  • It may also be possible to look at orgasm problems as related to disability, for example in the case of spinal cord injury or restless genital syndrome.
  • Additionally, it’s worth noting here that many patients with chronic pelvic pain deal with related, concurrent health problems. This happens frequently enough so that the National Vulvodynia Association is associated with the Overlapping Conditions Alliance.
    • According to the Vulvodynia Survival Guide, 69% of vulvodynia patients also reported IBS, 56% IC, 28% Hashimoto’s disease, 30% fibromyalgia, and 30% reported autoimmune/inflammatory diseases (Glazer, 36.) So sometimes it’s hard to separate one thing from another.
      • So there’s some intersection between chronic problems, disabilities and FSD.
      • In some cases the sexual health problems may be secondary to these other co-conditions, other times sexual health may be considered equally important, and other times there may be no other health problem. I, for example, do not have (that I currently know of) any of the above listed co-conditions sometimes seen in vulvodynia patients.
  • I don’t know if or where low libido and arousal problems would fit in with this model. Maybe as secondary to (though not necessarily less important than) other chronic health problems, if such a problem exists? But then what if no problem can be pinpointed? I don’t know about that either.
    • Low libido in and of itself is not necessarily a problem at all, neither is asexuality. These are healthy variations of normal.
      • The social construction model of sexual dysfunction is particularly critical of the pathologization of variations in libido.
    • Likewise, sexual orientation is widely varied and these variations are healthy. Certainly you can be be queer and have a disability, be queer and have a sexual dysfunction, or queer and living with a disability and sexual dysfunction at the same time, but queer is not a disability.
  • I don’t know if or where acute/temporary/transitory sexual problems that resolve with little or no intervention would fit in with this model.
  • Chronic pelvic pain is usually invisible to others so you may face the same dilemmas as PWD that are non-sexual in nature. Invisible disabilities; “Pass” as fully able-bodied
    • Passing is complicated due to the pain being located in a taboo area you’re not supposed to talk about in public and even in private it’s still not exactly dinner conversation
  • Some treatments for primary health problems can have sexual side effects.
    • Ex. SSRI’s for depression

The social model of disability and FSD

The social model of disability proposes that systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society. It recognizes that while some people have physical, sensory, intellectual, or psychological variations, which may sometimes cause individual functional limitation or impairments, these do not have to lead to disability, unless society fails to take account of and include people regardless of their individual differences. The model does not deny that some individual differences lead to individual limitations or impairments, but rather that these are not the cause of individuals being excluded.

  • Society does not always do a good job making accommodations for people with disabilities; making accommodations would make impairments less disabling. (Ex. I have vision impairments, but with glasses (and surgery a long time ago) it’s not a big deal to me. So I am not visually disabled.)
    • In the case of chronic pelvic pain accommodation in daily life may mean something as simple as a pillow to sit on (without having to answer questions about why someone is carrying around a pillow in public)
    • Accommodation for a pelvic pain patient may mean something more complex like a special desk or chair (ex. a work station that does not put pressure on the pudental nerve) or frequent bathroom breaks
    • Sexual culture – if US culture were less intercourse-obsessed, I’d probably feel less pressure to perform intercourse and would feel more secure in my sexual identity and non-penetrative activities that I consistently enjoy and can perform without problems
  • Social model of disability still leaves room for medical intervention where appropriate
    • Do not force people with disabilities (PWD) into medical treatments they do not want

Potential Problems/Areas to Explore

  • A lot of people are not going to be comfortable considering themselves disabled due to sexual dysfunction
  • Both disability and sexual dysfunction are stigmatized in the media. It’s considered “Bad” to have either, or both.
    • Why does this stigma exist?
    • What are some sources of stigma and stereotypes?
    • Is there anything inherently “Wrong” with having a disability or sexual dysfunction?
  • The media
    • Relative invisibility of sexual dysfunctions
    • When sexual dysfunctions do appear, how are they depicted?
    • How are “Normal” sexual relations depicted?
  • The DSM-IV and soon-to-be DSM-V revision: What do they say about sexual dysfunction?
    • What does it mean that sexual dysfunction is classed in the diagnostic statistic manual of mental health?
    • What has the DSM-IV said about sexual dysfunction in the past?
  • Is there a hierarchy of what is considered a valid sexual dysfunction and what isn’t?
    • Are some sexual dysfunctions treated with a higher priority than others? Why or why not?
    • Are some individuals or groups of people who experience sexual dysfunction treated with a higher priority than others? Why or why not?
  • Disability & sexuality – PWD are de-sexualized; accessibility to sexuality resources may be limited; PWD are at increased risk of sexual abuse; PWD may also be fetishized

Things that make sexual dysfunction as disability hard to think about

  • It’s not easy to embrace the term FSD due to the history of female sexual dysfunction & hysteria
    • Ex. Freud & the vaginal orgasm, “Frigidity,” Victorian era, treatment for hysteria, hysterical paroxysm (orgasm) the DSM & homosexuality
  • Disability itself is still stigmatized
  • Current experts on sexual dysfunction
    • Who are they and what do they say about sexual dysfunction?
    • When Dr. Tiefer states for example, “What sickness befalls the person who avoids sex? What disability?” (Sex is Not a Natural Act, location 241) from what direction is sex looked at?
      • This quote also makes it quite hard to think about sexual dysfunction as a disability, even when it’s pain, which may be the reason for ‘sickness’ and avoiding sex.
  • The gender binary
    • The social construction model of sexual dysfunction tends to be more open to non-binary identified folks than the medical model
  • Risk of appropriation – is it even okay for me to think about this?
  • My own privilege – can’t talk for anybody else,
    • Are there any groups or individuals the disability model overlooks or arbitrarily sweeps in?
  • My utter lack of credibility & professionalism

As you can see, there are a few places where I’m asking more questions than I have answers for – because I don’t have all the answers. And in some places, I’ve left off with “I don’t know.” Because I seriously don’t know. You’ll also notice that I tend toward FSD in particular rather than the more general term sexual dysfunction, in large part because that’s what I have the most experience with.

Flora also had some points she wanted to touch upon re: sexual dysfunction as disability, and she hit upon several areas I missed:

  • Fear of disability as a factor in unwillingness to accept FSD and similar disorders as real, or desire to dismiss it as “in your head.”
    • Many non-disabled people use magical thinking about disability due to their fear of it, especially to invisible disabilities that are difficult to objectively prove the symptoms of– “if I don’t believe in it or that it can happen to me, it won’t.”
  • Absence of disability is a form of privilege, which is as true of FSD as any other disability.
    • Sex-positive feminists need to check their own privilege and consider whether their definitions of sex, sexual liberation, sex-positivity, etc, can embrace people with disabilities or are only for the non-disabled (it usually seems to be the latter, which is why I don’t read many sex positive feminist blogs).  Or only for people who are not disabled in certain ways (i.e. inability to have intercourse).
  • Fears about a “manufactured epidemic” of sexual dysfunction and whether there’s ever anything to this.
  • Role of partners (of any gender)– what is their responsibility?
    • Can “forgetting” a partner’s FSD or acting like it magically went away if your partner hasn’t mentioned it in a while (which MANY non-disabled people do with invisible disabilities) ever be excused?
    • How do you have “the talk” (i.e. telling them that you have it) before having sex with a new partner– are there right/wrong ways of doing it?
  • Why are people with disabilities overlooked by designers of sex toys? … Why are devices like dilators considered to be strictly medical devices?
  • Why don’t we have, for example, the option of buying dildos or vibrators in the same range of sizes as dilators?
  • Why don’t more sex manuals address the issue?

Flora also pointed out there are issues of consent to consider, (Traveltothesky touched upon something like this briefly a few months ago)  as well as society’s (especially in the USA) obsession with PIV intercourse as the only “Real” way to have sex. For folks with sexual problems, his view adds an additional layer of pressure to “Perform” even if doing so is unenjoyable and/or outright painful.

I think that sometimes there can be overlap between disability and sexual dysfunction. And I think that there are several new questions & areas here to explore which haven’t been looked at with either of the more traditional models. I hope that by thinking about another alternative way of looking at sexual dysfunction some weaknesses in the current models can be addressed while keeping strong points, and present interesting, overlooked ways of looking at sex and disability.

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10 Comments »

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  1. I don’t think I’ve commented here yet, but have been reading for awhile. This was a wonderful post with so many good questions. I am someone with female sexual dysfunction as well as other disabilities, so this was a very interesting read for me.

  2. This is fascinating — good questions are so much more interesting than answers, sometimes (though answers are awfully useful). A question, though — you mention low libido and anorgasmia briefly in this post. I’ve looked back through your blog, and I can’t see much that deals with either of these issues. It is perfectly possible that I’m missing something, but I’d be really fascinated to read posts on those issues as well. If you know offhand of any posts or blogs, I’d love to read them.

    • Well don’t forget, I had help coming up with these questions.

      There’s not a lot about low libido & anorgasmia on this blog because – well for the longest time it’s been me writing alone for the most part & it’s only within the last few months that guest posters have been approaching me. & I don’t have a lot of personal experience with low libido & anorgasmia. The only times so far that my libido has crashed have been temporary & usually due to something I could pinpoint, like a health problem or major life stressor or pain.

      Those are two areas I need to work on & would like to address in the future, and/or invite guest posters to write about. Part of the reason I haven’t written too much about them yet though is also an answer to another one of your questions –
      So far I have not yet found blogs & websites I feel comfortable with that talk about low libido & anorgasmia. Actually on second thought there’s like… there’s like one or two sex therapists that I read fairly regularly but I don’t have a link to their blogs yet because some of their content is kinda iffy to me personally. I’ll e-mail you links to them.

      • I remember a horrible comments exchange I read on a feminist blog once. I can’t remember the actual name of the blog, but it was one of the things that made me start thinking that women with sexual dysfunction needed to have our own websites and blogs rather than trying to beg mainstream feminists to take us seriously. Anyway, it was a post discussing birth control pills and evidence that for some women who stop taking the pill, their hormone levels don’t necessarily revert immediately to what they were before taking it, and this one woman came in to say that her libido had disappeared when she started taking birth control and she’d never fully regained it. She also mentioned intercourse becoming painful for her, which many commentors seemed to ignore in favor of basically shouting her down about how her decreased sex drive was somehow not a problem, and if she thought she wanted more of one, she’d just been brainwashed by the media/Big Pharma/etc. She tried to explain over and over that it was a problem for her because she was not happy with it and wanted to have a sex drive again, and most of the responses seemed to amount to telling her that that was somehow unfeminist because it wasn’t “accepting her body.” And insisting that she couldn’t possibly really want this for herself, she only thought she wanted it because she was brainwashed and couldn’t think for herself, etc, etc.

        So, yeah, I’d say that in the case of people who are not happy with having low or no sex drive, it could definitely be classified as a sexual dysfunction.

        Though, I’ve noticed a really bizarre “damned if you do, damned if you don’t” thing among some sex-positive feminists. If you want a higher libido you’re told that you’ve been brainwashed or fallen for some media-created panic, and if you’re asexual you’re told that you’ve been brainwashed or fallen for some supposed “fad” of asexuality. Like, I found this recently from a big name sex-positive feminist, in which she claims that there’s some new fad of masses of young women suddenly declaring themselves asexual just because they don’t know how to have an orgasm: http://susiebright.blogs.com/susie_brights_journal_/2009/08/the-orgasm-gap-just-how-big-is-it.html (The entry links to a podcast, which I didn’t have the patience to listen to, but maybe someone else will. Aside from that, all I can think of is “why is everyone in the picture white?”)

        • Ugh that exchange sounds hard to handle. I believe it though. A while back I stumbled across an old comments exchange re: FSD & hormonal birth control pills on a feminist blog and it got real ugly real fast – I seem to recall an ablist ad-hominem was used towards the woman who said she had FSD.

          I think it’s definitely okay to let women who are bothered by a low or lack of sex drive identify as having sexual dysfunction. I never, ever want to deny someone who says “Hey I think I have a problem and I think I may need some outside help with it.” It’s so frustrating to run into that denial. How does it help?

          I mean like… people with sexual dysfunctions, are capable of critical thought too!

          Re: all the white people in the picture of the foot making a circle:Well actually that’s another thing… One thing I’m wary about is that, what I’ve read in journals & books suggests that women of color do not report sexual pain (like vulvodynia) as frequently as white women do, and so if we make it so that only pain is valid as a sexual complaint then it’s going to do that thing where the opinions of women of color aren’t actively sought out. Which is a long-term problem in feminism.

          I can’t speak much for the content of the podcast at this time though cuz I rarely have the patience to listen to them too.

          • I’ve been thinking about this for a couple of months, and come to the conclusion… I think on the whole, women of color would be more harmed by an assumption that pain-related FSD (or IC, IBS, fibromyalgia, etc) is a “white woman’s disease” than by emphasizing pain above other types of sexual dysfunction. Women disproportionately tend to have their complaints about pain blown off in the medical system, to begin with, and women of color even more so than white women. It’s difficult to tell, I think, with racism in the medical system being as persistent as it is, how much rates of FSD and pain differ between various demographics, and how much is an artifact of underreporting/underdiagnosing.

            I’ve read a few things about WOC in general getting less early treatment and detection of things like cancer and STIs in part because their experiences in the medical system can be so humiliating– that even among those who have insurance and can afford treatment, there’s often a strongly negative attitude towards WOC’s bodies and particularly their sexuality. And while it’s not the same thing, I have some personal experience with the (imo) related phenomenon of disabled people who don’t seek medical treatment because we so often experience persistent demeaning, humiliating treatment at the hands of the system and its negative attitudes towards our bodies.

            But… I don’t want to be presumptuous because I’m not speaking from a WOC perspective here. I’m basing it partly on various accounts I’ve read by WOC who were told by doctors they couldn’t have certain problems (mostly chronic illnesses) because they weren’t white and middle-aged, and also my own experience as someone having disabilities that are often thought to only or mainly occur in people from a more privileged group (males). And how this was used to further marginalize me (being told that my life experiences weren’t relevant because they weren’t representative of the statistical “norm,” etc).

            I do think that other types of sexual dysfunction should be emphasized– like, letting individual women decide when they are unhappy with a lack of libido and stop telling them they’re brainwashed by media/big pharma– because those are important as well for life satisfaction. But I’ve also had the experience of finding it very frustrating when people from my demographic were repeatedly unrepresented or denied, wrt certain disabilities.

            • That’s another thing to consider. Even if there is something to studies that suggest WOC report sexual pain less frequently than whites, that could mean that when women of color do experience pain problems, they’ll get the brush-off by doctors. Don’t fit the profile.

              Actually, did you see Camille Paglia’s editorial re: filbanserin in the New York Times a few weeks ago? At one point, she explicitly says, “But to what extent do these complaints about sexual apathy reflect a medical reality, and how much do they actually emanate from the anxious, overachieving, white upper middle class?”

              Which does two things. 1, obviously, buys into the idea that FSD isn’t a valid medical thing. 2. Suggests that sexual problems and dissatisfaction is limited to white women. It goes on beyond that as the essay continues, plus there’s classism.

              So to me this says that, people like Paglia believe that FSD, in this case, she’s referring to HSDD, is a “White women’s disease.” Or perhaps, in keeping with her own language, “White women’s sexual malaise.” She’s not even talking about pain here.

              But I can’t begin to speculate as to the extent and degree of the sexual problems women of color might experience.

        • Okay you know what, responding to my own thread 2 months later because…

          Upon further reflection and seeing what’s been going on re: HSDD & filbasnerin in the last few weeks,
          I am now absolutely 100% convinced beyond a shadow of a doubt that, it’s okay to include dysfunction due to low or absent libido in a disability model of FSD. Because I am seeing so much ablism in comments about it and I can’t stand it, I cannot, in good conscience, block women with sexual dysfunction due to low or absent libido, in and of itself. Like, I understand the criticism of problematizing low libido but we need to recognize that low libido in and of itself can be a problem on its own.

          (Keeping in mind that models rarely, if ever, work 100% of the time and there’s no need to cut off whatever part of yourself doesn’t fit in with it or expand to fit it, etc etc. I like flexibility.)

  3. […] BADD 2k10 – sexual dysfunction as disability « Feminists with Female Sexual Dysfunction The social construction model frames sexual dysfunction (especially female sexual dysfunction) as the product of cultural and relationship problems, like society’s skewed views on sex, women and medicine. If these social problems can be addressed on a larger scale, then theoretically there wouldn’t be many dysfunctions at all because a wider variety of sexual expressions, activities and outcomes would be accepted as on the broad spectrum of normal. So, fewer individuals would experience personal distress. However this model gives off a very strong anti-medicine vibe, and in practice I’ve seen experts and laypersons frame FSD as fake, going so far as to rake people who live with sexual dysfunctions (and their partners) across the coals. Proponents of the social construction model often frame FSD as newly invented and “Fake,” which carries an implicit accusation against women who experience sexual dysfunctions as being foolish, gullible lying fakers. (tags: ability sex gender models.of.disability) […]

  4. […] of what and isn’t a valid sexual dysfunction and by extension what is and isn’t a valid disability. Bear in mind that to be considered a sexual dysfunction clinically, there must be acute personal […]


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