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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