Updated: Jan 19
By Philippa Wimbledon
To mark the start of sexual health awareness week we at The LUNA Project wanted to look at sex as a disability and how it’s taught in schools. Being a teenager comes with the idea that you need to spend those years exploring your identity but how can you do that with a disability/chronic illness?
There has always been this belief that the first time you have sex, it’s going to be a perfect and life-changing moment – when in reality it can be very different. From the age of fifteen onwards, it can feel like everyone around you is either thinking about or having sex and this can lead to feeling a large amount of pressure. It doesn’t help that that modern pop culture relies heavily on teenage shows featuring sex scenes featuring adults playing teenage roles (we’re looking at you Riverdale!) It can be very confusing when you’re a teenager and it feels like everyone else around you is “doing it” and you’re not – especially if you have a disability or chronic illness thrown into the mix.
The hardest part about being a young adult with a disability is the lack of representation surrounding sex. Not only are we seeing adults dressed up as sexy teenagers in tv programmes, but they rarely have a disability. It can be hard for anyone to feel “sexy” and “desirable” but to do so with a disability can be harder. Many body positivity activists are campaigning to make this change like @sophjbutler but we have a long way to go yet. Teaching a more inclusive sexual education at school is the next step.
Experiences of sexual education at school can range from very little to so uncomfortable that no-one wants to relieve it again. My own experience of sex education at school was being aged 14-15 and having to sit through a 30-minute session where we watched our teacher put a condom on a banana. As someone who was diagnosed with a chronic illness relating to reproductive organs in my early twenties – I was shocked that I’d never heard about it before in my sex education classes. After talking to people with various types of disabilities, this appears to be a normal reaction.
I spoke to Lucy Webster, a journalist for the BBC who also has Cerebral Palsy about her experiences with sex education: “My disability was never mentioned during my sexual education classes and I was too embarrassed to ask questions, so I spent most of my teenage years questioning whether relationships and sex were for me. I found out it was through conversations with my friends at University but this left me feeling conflicted as an adult because I desperately want a partner but I just don’t think it’s possible to navigate the logistics of having sex.”
Sex can be messy and unpredictable for anyone. With access to free online porn on the rise, it’s important to know that sex isn’t always how you think it’s going to be. This is especially true if you are having sex with someone who has a disability or chronic illness. Historically, sex has been a taboo subject so many people still feel uncomfortable talking about the good, the bad and the messy that comes with having a healthy sexual relationship.
I spoke to Elena Bray- Giovanno who has Ehlers - Danlos Syndrome, Hypermobility, Dysautonomia, Fibromyalgia and Marcel Activation Syndrome. This means that she needs care every day and can’t work due to disabilities. Elena feels that “Her sex life isn’t greatly affected, she struggles with dislocation during sex, her hip has popped out multiple times. It affects meeting people more because not a lot of people want to go out with someone who is disabled.”
When asked about her own experiences with sexual education at school and whether she felt that it was inclusive of her disabilities, her experiences were very similar to mine. “Sex education at school was how to put a condom on, learning about STI’s, there was nothing about pleasure of the mechanics on how to have sex for the first time.”
She later added: “It’s not a one size fits all either. Sex can be weird and if you’re having sex with a disabled person it’ll probably be even weirder.”
Part of being disabled is having to learn how to communicate properly whether that be with medical professionals, family members or even just strangers wanting to know more. This is something that is often not thought about by those who are able-bodied. Healthy sexual relationships rely heavily on communication and trust, regardless of disabilities. This can mean that inter-abled relationships often feel that they move at a faster pace as you often have to have difficult conversations.
I spoke to Muireann Bochanan, another LUNA team member about her experiences with dating and disabilities. Murieann has Functional Neurological Disorder which means she can hallucinate, memory problems and seizures. She feels that her relationship has had to move faster than others because of this: “In lots of ways not just sexual the relationship had to quite serious, quite fast. We’ve had to have conversations about if I have a seizure, but it wasn’t uncomfortable. I’m quite used to talking about it.”
She later added: “Even though it’s awkward and scary – always be upfront with people about what your limitations are with your partners.”
Sex isn’t something that anyone should be worried about and neither is making the choice to not have sex. We at LUNA believe that it’s everyone’s individual choice to make. However, if you do have a disability or are in a sexual relationship with someone who does – it is possible to manage. It might just be different to how you imagined it to be.
My advice to anyone with a disability who may be thinking about trying to have sex for the first time is to make sure you talk to someone you trust first. It can be embarrassing and awkward at first but google doesn’t always have the answers you need – and it may end up scaring you more. If you’re the sexual partner of someone with a disability, consent is key. You need to both be 100% comfortable about what is about to happen and that it might be messy. More importantly – make sure you’re having fun and enjoying yourself.
(originally published 16/9/20)