Saturday, February 14, 2009

Valentine's Day: Sex and Disability

*warning: adult topic, adults only*

In response to a request Dave Hingsburger made of fellow disability bloggers, I agreed to write a post on disability and sexuality/sensuality/love for Valentine's Day.

As I discussed ideas for this particular blog with my husband, I asked him whether people think we have sex or not. I asked this question while we were in the shower together, an intimate moment that maybe others don’t think we have. He said he hadn’t thought of it before. Though I’ve not received the intrusive questions in this regard that some of my friends have, I have been asked whether I can have more children and whether my children were planned, and have had people who didn’t know I have children look shocked when I mention them, shocked because I go about the world sitting down rather than standing up. I’ve been asked by a nurse, in front of my aunt and probably before the waiting room door closed, when my last period was and then made to take a pregnancy test despite telling her that my husband had a vasectomy, which I didn’t really want to discuss in front of my aunt. I did want another child but it’s just not a good idea. Being made to take the test broke my heart.

Does disability interfere with sex? Sure, it can, but that’s an unfair assumption. Juxtaposed with the Viagra culture that celebrates heterosexual missionary sex as not only the norm, but the only valid, nonstigmatized practice, with a culture that values hooking up over relationships, sex when disability is involved engenders creativity, joy, and connection. What many people seem to forget is that even missionary sex is not that difficult, though it’s pretty limiting. There are alternate positions and other possibilities that are more touching, more arousing, more spiritually expansive and that may work better for certain disabilities or pain issues.

It’s often said that our brains are our biggest sex organ. There’s a truth to that, but I think that misses too much and turns sexuality into an internal experience that doesn’t acknowledge the external one. Meeting your lover’s eyes with your own, then dropping them, feeling him or her brush a hand against your skin or capture a curl in the fingertips, hearing the sudden switch in the voice as it becomes softer, getting the inside comment that only the two of you know, these experiences can be sexier than more direct actions. And at the end of the day, when one is tired, there is nothing better than pushing yourself against the warmth of another, just to be close for those hours. Laura Hershey writes that while many people see the “caregiver” role as antithetical to sexuality, the dynamic of the relationship may intensify between two people—not a caregiver and a patient, but two people already loving one another. One only has to look at the poems of Jane Kenyon ("The Sick Wife") for evidence. While the independence of individuals within a relationship is often eroticized, a healthy relationship is dynamic and protection, care, and vulnerability can also be erotic, these three qualities available to both individuals.

What’s at stake for many of us is the desirability of the disabled body, the presumption from others as well as ourselves that we’re not sexual or not “long-term material.” Subject to the gaze as if we were the cinema, we hear people mocking others with disabilities, we’ve been mocked ourselves. Who among us who were disabled as children would ever have seen ourselves as relationship or marriage material? Believing ourselves undesirable: I know it’s a problem, and I learned early to meet the gaze with distrust. I don’t know the answer other than to say people who don’t conform in all kinds of ways find lovers and have beautiful relationships—and no one says anything. Somehow people believe our health, our sexuality, our bodies, are public and therefore mark us with their commentary as if pissing on a fire hydrant. In this regard, I think adults with disabilities need more erotica that includes disability and representations of disability rather than the typical ideals. I have to say I don’t know how to approach this without making disabled bodies more subject to “devotees” or derision.

Desirability aside, what can interfere with sex is denial of our rights. For those receiving care from others or in hospitals, rehab, or nursing homes, others’ perceptions and stigmas rather than the physical body become the barrier to sex, as well as lack of privacy. And let’s not limit sexuality to those in relationships—single people and young people can need privacy and intimacy as well, and that can be denied and people shamed. Anyone who doesn't know the extent to which this is meant has not been entirely physically dependent on someone else for care. Some writers with disabilities have said their doctors were shocked that they have sex. With doctors and other health care practitioners assuming we “don’t” and access to health care limited by physical barriers (exam tables that are too high, rooms that won’t accommodate a wheelchair), birth control may be difficult to obtain, much less information about sex. There’s also the gender divide—information on some spine and neurological conditions, even diabetes, mentions the important warning sign of the inability to become erect or ejaculate in men, but never are the female equivalents mentioned—the inability to become aroused or to orgasm. And yet this parallel experience would occur. Why is women’s sexual function treated as nonessential, an accessory that would not merit alarm if it just disappeared?

I believe that many of us at certain points in our disability have wanted information about how our changing body has affected our sexuality, and granted it will, though that doesn’t mean we’re not having sex. Extreme pain may limit some of us, while others may experience dampened desire because of medications or fatigue. What I think many of us learn is that there are no easy answers—there are options, such as alternate positions or increasing pain medicine in advance (hello, spontaneity), but no easy answers. For some of us, getting sexual satisfaction rather than just having sex is going to create pain—it just is, and it must be planned for or accommodated and mitigated as much as possible. I know what we want to hear is that there’s some delightful way to put it all aside for a while—the aches and pains, the worries. Again, at times disability can limit sex or change its expressions, but so can other life experiences that would inevitably intrude—for example, pregnancy, parenting a young child or caring for a parent, very long work hours, emotional distance. In this way we are no different, only perhaps far more creative and often with richer, more varied and intense experience than ability would allow.

Happy Valentine’s Day to all of you, dear readers.


Dave Hingsburger said...

What a great card to get before the post. I nodded my head off when I read about how the careprovider, providee roles could INTENSIFY rather than diminish the joy of real connection. Loved this

FridaWrites said...

Thanks so much, Dave--I look forward to reading the others.

S. said...

I loved this. It's given me a lot to think about -- where I am now is oh-god-I'll-never-have-sex-again, or at least never the sex I'm used to again. Extremely comforting to know it can pass, and one can work with circumstances.

IcedLatte said...

WOW! Fabulous post. I am leaving more informed than I was before. Thank so much for being so open!

FridaWrites said...

Your feedback is greatly appreciated, S and Iced Latte--I did have my anxieties about writing openly. When I've looked for information myself, I've found what's available to be pretty limited. Since any of these ideas could be expanded on greatly (birth control or self esteem), I will probably write more over time.