This one's about sex. If you don't want to read it for whatever reason, then look away now!
I was chatting with a friend yesterday about sex. Now, those of you who know me offline will find nothing unusual in that, being as I talk about sex all the time, but I don't know how many of you know why. I am very open about my sex life, because I have needed others to be open with me in order to navigate my various impairments.
A lot of information that is available about sex and disability is very cis-heteronormative*, and focuses on one specific impairment - which for those like me who don't fall into these neat groupings can get quite frustrating.
I have found some resources very useful - most online, which is normally the case when you're trying to find stuff for 3+ intersecting identities - but it's very hit and miss. There are loads of sites about sex and disability and a lot of them serve to undo the hard work of the few, through cis/heteronormativity, through questioning whether disabled people should be allowed to have sex or preaching involuntary sterilisation, through reducing the issue to the mechanics of overcoming 'wrong' anatomy and physiology.
I have never been asked how my impairment affects my sex life or my relationship. (The fact that I have never been asked how Beanie copes with being my carer, and if she needs any support should also be noted.) Most medics will have seen folk presenting with quite advanced disease or pathology involving their genitals, because they have been too embarrassed to come before. This should never happen.
It is not all the fault of the NHS - when sex education at school is little more than a lecture on puberty and how to use a condom is it any surprise that people have so much shame surrounding sex? There is more to sexual health than avoiding STDs, more to sex than what fits in where, more to sexuality than heternormativity and gender binaries, more to sexuality than sex.
I understand that doctors are embarrassed to ask, and that they don't want to be seen as prying, but I (gently, and sensitively) ask all of my patients with long-term conditions if it affects their relationship and/or sex life, and none have been offended. Obviously it's not a question to ask in the middle of a bustling ward round, and sometimes it is not possible to ensure adequate privacy, but I believe that it is important to try and find time to ask (just as I always ask if patient's have religious beliefs and/or a faith community, and how that has an impact on their experience).
When I consider the biopsychosocial model - a way of considering the holistic effects of a conditon physically, mentally and socially, I add in sexually and spiritually, because although some argue that those fall somewhere under the others, they are not treated as though they are.
The answer to a lack of good sex ed, and consequent embarrassment and shame is not to ignore the issue because it's all a bit awkward (nor is it to be gratuitous and crude - obviously). Giving medical students and doctors some sex-positive sex ed, and outlining the issues that patients may face would be a good start I think.
What are some good resouces you have found about sex and disability?
*Is written from a perspective that cis-gendered hetersexuality is the norm, and therefore that anything else is abnormal (and thus not worth considering / writing about)