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This week's post is part of VP's intermittent but continuing series on sex and disability. Once again, credit to Shanna Katz and the folks who attended her workshop at the Body Love Conference for the original discussion of this topic.
At some point -- or at several points -- during the course of their lives, many people with disabilities (PWD) will tackle the issue of whether, when, and how to disclose their disabilities to partners or potential partners. It can be an important step in securing sexual expression that is -- physically and mentally -- safe, healthy, and enjoyable. However, it may also come with its own set of concerns -- that are likely going to look different for each person and each situation, depending on a variety of factors, such as the nature of one's disability (or disabilities) as well as the nature of the current or prospective sexual relationship.
For some folks with visible disabilities, not disclosing isn't a meaningful choice as the nature of their disability may mean a potential partner has some knowledge of it just by looking. Having that decision functionally removed, particularly in a context as potentially intimate as a sexual relationship, can feel disconcerting or invasive. There's also the issue that sometimes a visible disability doesn't affect sex as much as a partner might assume -- and so the PWD is in a place of asking the partner not to make it a point of fixation and/or reassuring the partner that it isn't an issue.
Similarly, for some people with invisible disabilities, disclosure comes with its own complications. If one doesn't "look sick," a potential partner may not believe the PWD that they're actually disabled. Even a good, believing partner may have trouble understanding exactly how a given disability may affect particular sexual actions or reactions. Understandably, this can feel frustrating or invalidating -- which is not exactly a recipe for stellar sex.
Add to this the idea -- the reality, really -- that not every sexual relationship is in the framework of having -- or even wanting -- a long-term, involved partnership. Sometimes it is, yes. But sometimes, it's a hook-up at a bar or a party or a first date that turned out surprisingly well but isn't a relationship yet. Or it is a relationship, but it's a new one, and while you and New Partner have good "right now" chemistry, you're still feeling out the relationship's long-term potential (or if any of the folks involved actually want that from a relationship at the moment).
Without disclosing anyone's personal stories from the workshop, there were a fair number of echoed concerns about the ways in which disclosing made us feel vulnerable:
- What if I tell a potential partner about my disability, and then they don't want to have sex with me and/or continue a relationship with me? It's one thing to say "it's their loss" or "better to know now" -- even if they're both true every time -- and quite another to feel rejected, especially if it happens time after time after time.
- What if a partner, who'd initially been accepting and understanding of my disability, changes their mind when considering the long-term prospects -- after we've both invested a lot of time and effort into the relationship?
- What happens if I don't tell, and then something happens during sex that's painful or unsafe for me? How does that affect me, yes, but also, how does that affect the relationship overall?
- What happens if I tell, and a partner just doesn't Get It? Like, if they're skeptical that my disability affects my life the way I say it does? Or they don't Get that some conditions fluctuate, and I can feel capable of different activities on different days?
- Just how much am I going to have to educate my partner about what it means to be me with this disability? What if I'm not sure that I want to do that?
- What if my partner, especially once we're in a committed relationship, starts to resent my disability over time? Like, if it means I can't or don't want to have sex as often or if one of their favorite sexual activities is one I place "off limits"? How do I help them deal with those feelings without also making them my responsibility?
Which is not to say that all PWD are worrying about disclosure all of the time. Rather, these were issues a number of us had encountered while we were already negotiating relationships. At the time those relationships -- or those stages in the relationships -- were happening, a lot of us had never realized these would be issues... perhaps in part because disabled sexuality isn't normalized in our culture, which means that there aren't enough conversations about these issues. I don't know that we came to any concrete answers -- even for ourselves, because I'm sure the "balance point" of when to disclose varies a lot from person to person -- but I found it really helpful to articulate all the smaller, more concrete questions underlying the larger, more nebulous one.
For me, step one has always been breaking down the problem. Step two is getting to the answers. :)
What about you? If you have experience negotiating sex and the disclosure of disability, want to talk about what that's been like for you? What's been scary or frustrating or troublesome about partnered sex and/or relationships (if you do those things) -- but also, if you have these stories, what's been helpful and what's worked? If you don't have personal experience in this area, what are your thoughts in terms of being an ally to PWD?