Valentine’s Day – a day that puts the focus on couples and on sexual/romantic love – seems like a good day to talk about sex and self worth. Especially as a disabled woman who has a complex relationship with those issues.
I’m Samantha Renke: a thirtysomething, Capricorn, actress and disability campaigner living in East London. I was born with a rare genetic condition called Osteogenesis Impefecta (more commonly known as Brittle Bones), I am a full-time wheelchair user, and yes, I am a sexual being just like everyone else.
I’ve faced many obstacles in my life, but those around me have always worked with me to overcome them. When I needed an electric wheelchair my community fundraised to get me one. When I wanted to attend mainstream school they built ramps and I was assigned a personal assistant. When I couldn’t go ice skating for my friend’s birthday we had a slumber party instead. I’ve always felt supported, and although labelled ‘different’ by society, I’ve been encouraged not to be defined by my impairment.
That is, until we start to talk about sex.
‘Whenever I thought about sex I felt disabled’
I was raised in what some may describe as a ‘liberal’ household. My mother is German, and sexual awareness is seen very differently over there. My parents didn’t really censor what we saw on television and I was told about the birds and the bees at a young age. For me, sex just seemed natural and nothing to be ashamed of.
The issue came when I started secondary school. This is when I started to feel like a weirdo. Whenever I thought about sex, or simply being seen as a sexual being, I felt different. I felt disabled.
The questions surrounding my ability to have sex or even have a boyfriend seemed to fascinate my peers.
“Can you have sex or would you break a bone?”
“Can you have a baby?”
“If you had sex the man’s penis would come up through your mouth!” [a reference to my petite stature].
Hurtful, intrusive and sometimes downright rude questions to be asked by people I really didn’t know.
I’d go red, smile and often reply, ‘of course I can have sex!’.
‘If I couldn’t have sex then would I be dumped?’
But, in truth, I didn’t even know myself if any of those things were possible. I’d never seen a love scene in a film with someone like me in it. Never seen a rom-com with a disabled love interest. And the boys at my school seemed to be disgusted at the idea of dating someone in a wheelchair.
Sex and disability was never discussed at school and although I visited specialists on a regular basis, sex, pregnancy or even puberty and contraception were never brought up. This led to me using my own imagination and, as a serial worrier, I convinced myself that I wouldn’t even get my period. It was clear that my mother was equally clueless, so she left me in the dark. The ambiguity left me feeling less than human, undesirable and downright petrified about sex.
For many years I didn’t entertain the idea of a boyfriend. Not only did I feel unworthy of having that kind of relationship, I also didn’t want to disappoint anyone. If I couldn’t have sex then surely I would be dumped? The irony is that looking back, I did have guys in my life that liked me, but I continued to self-sabotage.
‘I have stopped trying to change who I am to fit others’ expectations’
The good news is that since that time I’ve come a long way in terms of feeling like a confident, sassy woman. I can now take my bra off during sex, keep the lights on, and no longer doubt whether anyone could find me attractive. I’m a massive flirt and love spending money on sexy lingerie.
I can now without hesitation tell my sexual partners that ‘reverse cowgirl’ may actually dislocate my hip, or that we should use a safe word (my favourite seems to be ‘monkey’, don’t ask me why, it just is), or that we will need to use a pillow to hoist me up a bit. I know that those I let into my bedroom are as lucky to have me in their lives as I am to have them in mine.
But despite my confidence, I still regularly face other people’s prejudices. I stay away from dating sites because of the ignorance of some people. Comments like, ‘you are so brave for putting yourself out there’ or ‘I could never fuck a disabled person’ are hurtful and I don’t need that negativity in my life. Literally ain’t nobody got time for that!
I have also been non-consensually put on the receiving end of other people’s fetishes because of my size and my disability, rather than because they find me – the whole package – attractive. Some men have targeted me because of my ‘childlike’ appearance. Given all of this I am cautious of who I get intimate with in a way that other women my age do not have to be.
‘Stay true to yourself and never bow down to what society expects’
My sexual confidence has been a gradual process, something that has strengthened over time, manifested through a combination of things. Working for the disabled community and feeling empowered by them. Knowing that others also experienced what I did growing up and I am in no way alone. Sharing my experiences and doubts with others. Exploring my own body, my limitations and my pleasures. And I have stopped trying to change who I am to fit what others may expect from me.
Whether you’ve never had sex, don’t want to have sex, or can’t get enough of it, my advice to you is to stay true to yourself and never bow down to what society expects of you. Sex is a wonderful thing, but masturbation and exploring your own body can be equally fulfilling.
Don’t believe what the media tells you: not everyone is having sex like rabbits. And you don’t have to be a Victoria’s Secret model or a Kardashian to be bursting with sex appeal.
Attraction is so much more than what’s on the surface, so never doubt your worth!
Samantha Renke is a Lancashire-born actress and public speaker. She is a trustee for the Brittle Bone Society, supporter of disability charity SCOPE and patron of Head2Head Theatre Company. She can regularly be found on TV and in print speaking out about disability equality, including on Loose Women and Jeremy Vine and as a columnist for Pos’ability magazine and Metro UK. You can find her on Twitter, Instagram and Facebook.
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