What You Want To Ask... But Don't
Navigating sex, love and beauty through disability is a topic that we need to talk about more as a society, with many of the barriers facing people with disabilities being put in place by society itself. I am excited to share my experiences with you and hope to open your eyes to the reality that being able-bodied is not a prerequisite for sex, love, nor beauty.
Unfortunately, beauty is something that many people struggle with, and I am no exception. When I was diagnosed with Ehlers Danlos Syndrome shortly after my 21st birthday, and then Cerebral Palsy just this year, my disability was largely invisible to the untrained eye. However, as my condition is progressive, over the past few years it has become more visible. This is due to gait abnormalities (medical talk for ‘I walk a bit differently to the average human’), the leg braces I wear to help me walk (called ankle foot orthoses or “AFOs” for short), and the fact that I now use a wheelchair part-time. Now that my disability is visible, I get stared at, a LOT. At first this really knocked my confidence and made me feel anything but beautiful, --the looks of pity that some people automatically gave me -- especially whilst using my wheelchair. To me this made no sense because, like many people with disabilities, I see my wheelchair as a form of freedom and independence. At the end of the day, both my AFOs and my wheelchair are essential to allowing me to achieve what I want to achieve and whilst on a bad day the stares still knock my confidence a bit, I am gradually learning to embrace them as part of what makes me beautiful. A huge part of this for me was the realisation that if I am never going to blend in with a crowd, I might as well embrace standing out and have fun with it! This realisation has come to fruition through a glittery lime green wheelchair and non-matching, patterned AFOs that I sometimes decorate with contact papers; because sometimes you just feel like changing the colour or pattern of your legs, right?.
Whilst your confidence and self-perception should never be defined by others, it definitely helps me to think that perhaps some of the stares are because people like the pattern of my AFOs or the colour of my wheelchair! I have found that this also acts as a talking point that encourages people to ask me about my disability, which gives me an incredible opportunity to raise awareness and reduce the taboo surrounding disability. I largely owe the confidence I have in regards to my disability to para-sports and role models including Kurt Fearnley and Madison de Rozario. Last year I medalled for Australia in para-badminton, and this year in para-rowing for South Australia as the first female para-rower to represent the state. Para-sport has helped me to become proud of my disability, improved my overall confidence, and made me feel beautiful again.
My disability does not alter my desire nor ability to love and be loved. While some people with disabilities will fall in love with other people with disabilities, many will enter relationships with people without disabilities, which are called inter-abled relationships. I have only ever been in inter-abled relationships. The YouTube channel ‘Squirmy and Grubs’ follows the lives of couple Shane Burcaw, who has Spinal Muscular Atrophy, and Hannah Aylward, who does not have a disability. Shane requires assistance with some physical tasks due to his condition and Hannah acts as his primary carer whilst also studying. However, in many inter-abled relationships external support workers may be employed as primary carers, and many people with disabilities do not require carers at all. People often assume that people with disabilities require more help than they actually do, and I have heard people state that dating someone with a disability would be ‘too much work’ and throw it into the too hard basket (oh how I would love to be able to chuck my own disability into the too hard basket sometimes!). However, one only has to look at the beautiful relationship that Shane and Hannah have to realise that love knows no bounds, nor should it. Some of the most independent and quite frankly incredible people I know have disabilities, so if you throw us all in the too hard basket you could be missing out! Also, have you ever considered some of the many perks that could come with dating someone with a disability?! I mean for starters date me, and thanks to my disability parking permit, your frustrated posts on Overheard about never being able to find a park at uni will be but a distant memory!
Society tends to de-sexualise people with disabilities and the concept that people with disabilities have sex is one of the biggest taboos of them all! The reality is, everyone is capable of having sex; and sex is not always penetrative, heterosexual, between two able-bodied people, between only two people, etc. etc. At the end of the day, as long as sex is consensual and safe, it is valid.
Unlike in the movies where ”good” sex seems to always be portrayed as seamlessly romantic, in reality sex is often awkward, messy, and at times outright hilarious! These are qualities that everyone should learn to embrace in order to get rid of this unrealistic concept of ”perfect” sex. It is okay to talk and laugh during sex! Communication is so important, both to give and check for consent, as well as to establish what is and is not working. For me, embracing the fact that sex is not always seamlessly romantic has been key to navigating sex with a disability. Part of my condition is that my joints dislocate relatively easily, so I have dislocated a variety of my joints during sex. Luckily, I am pretty efficient at re-locating them so my general response is to press pause, relocate it, have a good laugh, and then press play again. How often do you see that in romantic movies? The best advice I can give is to communicate your needs, wants, and concerns clearly and openly, and work with your partner(s) to experiment with what works for you and for them (this goes for everyone, not just people with disabilities!). But most importantly, remember that it is okay to laugh and have fun – sex is not meant to be romantic one hundred per cent of the time, it is going to be awkward, messy, and outright hilarious at times. I know some of my best experiences with sex have been exactly that, so embrace it!
Some concluding thoughts
So often when I mention my disability in conversation, I am met with something along the lines of “I’m so glad you brought it up I have been wanting to ask you about it for ages but didn’t want to offend you!” I have never been offended by someone asking about my disability. Whilst some people may not be as comfortable as I am talking about their disability, as a general rule if you approach it respectfully and show empathy, I highly doubt you are going to cause offense. Whilst my disability does not define me, it has significantly influenced who I am today and is something that I want people to understand. I challenge you to question your assumptions about disability and what this means in terms of sex, love and beauty. I challenge you to not make assumptions about people with a disability, and instead to just ask them about it so it is no longer the elephant in the room!