PART I: SHOULD I SHUT UP SHOP?
When I sustained a spinal cord injury at 17-years old, it felt like my sex life no longer mattered. It had been taken from me in an instant, and nobody was helping me figure out how to get it back. Health professionals I spoke to made me feel dismissed. Most of the information I received was about fertility, not about how I might enjoy sex. Initially, after my injury, I hated my strange, new body. It didn’t work like it used to, sometimes there were tubes, and occasionally there was mess. Frustrated and exhausted, I tried to ‘shut up shop.’ The only problem? I was a 17-year-old girl with raging hormones and a whole life ahead of me – desire was impossible to avoid.
About a year after my accident, I found myself in bed with an ex-boyfriend. As we lay together, I remember lying in the dark, tears rolling silently down my face, and I whispered to him, “how can you bear to touch me now I’m like this?” His reply was just what I needed to hear. “Don’t say that!” he told me, “that’s a massive put-down, to you and me.” He was right. He had chosen to be with me and me with him. All the other stuff was background noise – a noise that, if I let it, could make me miss the possibilities of what might be. Instead, I decided to take a chance. I still had fears and reservations about my new body, but I got on with being a young, sexual person.
PART II: RECLAIMING ME
After my injury, I had to find new ways to enjoy my body – and I discovered that what I first thought was wrong – my sex life wasn’t over, it was only just beginning. If you’re starting on your journey to reclaim your body, it might start with your mind. We have to do the work to reframe disability within ourselves. After my injury, a lot of the negative assumptions I made about relationships were self-perpetuated. For the first few years, I was my own worst enemy and sabotaged most potential relationships. I had to let go of those dominant narratives we are all fed daily about normal, perfect people and relationships – because they don’t exist.
Reframing those narratives takes work and is a journey, I found that seeing images of women like myself made me feel less alone; I started working on my self-confidence and I put more effort into my appearance. I started valuing myself. I made an effort to no longer call myself broken. Instead, I was a survivor. If I found myself talking to someone I liked, I would intentionally talk about many of the positive elements of my injury; my adaptability, my new strengths, and I never put myself down. My advice is to focus on building your confidence and value yourself first. An emotional connection with a partner also makes things easier – this is something I needed, especially with a body that responds differently. I’ve found that building a connection and teaching my partner what brought me pleasure and helped mitigate my fears. Over time, what I enjoyed grew exponentially as I started feeling better about myself and confident enough to vocalise what I enjoyed.
I learnt that the normative penultimate goal of the ‘orgasm’ might be different for my body, but it could be just as pleasurable. It comes down to figuring out what works for you. It took me some time to muster the courage to explore my new body, so take as much time as you need. I discovered that my neck, shoulders, and arms were extremely sensitive, and I found that if my brain was ‘turned on,’ anything was possible. A good place to start is focusing on the areas where you have sensation and working from there. Everybody is different. I’ve found that discussions with other disabled people have helped me navigate my desires and discover new things to try – don’t be afraid of having a discussion with people you trust. Some friends even suggested that their sex lives were better than when they weren’t disabled as it had forced them to become good communicators with their partners. Everyone I met had at one point felt like their days of desire were over, but discovered that was untrue. Almost everything we’ve been taught to believe about living with a disability is untrue – and once you understand that, you’re able to move forward and be free to explore your body, relationships, and desires.
PART III: THE DOWN LOW
If you are feeling like I once did, and want to ‘shut-up shop,’ here are some answers to questions I have grappled with:
Can I have sex with a catheter?
Yes, absolutely. For people with indwelling catheters, you can remove them for the duration of sex or work around them. Wear crotchless underwear and have the tube tucked into them – if you want the ‘it’s there but not there’ look. It’s also about being okay with body fluid, perhaps have a towel underneath, or if possible, try it in a bathtub!
Where shall I start?
Because everyone has different levels of sensation, figuring out what you like is down to personal preference – massage, soft-touching might be a good place to start. As I said, open communication is key, figure out what you like and what you find stimulating through exploration and then articulate that to your partner. Make it fun and don’t put pressure on yourself to make things perfect – after all, with the problem-solving disabled people do every day, there’s nothing you can’t try I’ve found.
Will people find me attractive?
Something I’ve learnt is that sexiness that comes with confidence. Confidence comes with time, with re-setting your ideas about disability, sex, and intimacy. The term ‘love yourself’ takes on more weight when you’re disabled, often it feels like an impossible task; because we’re told, still, both implicitly and explicitly that our bodies have less value. But the great news is – we adapt and have a community of peers. We can adapt our way of thinking and look to our peers for support – when we can let go of those fears, those hang-ups – and see the value of our body in our minds – anything is possible. Those beliefs the world perpetuates about disability only have power over you if you let them.
Do I tell a potential partner I’m disabled straight away, especially on dating websites?
This is up to you. Some people do, others don’t. I’m a firm believer in being honest and up-front. In this case, the dominant narratives regarding disability paint it primarily as a negative attribute, so my advice is to focus first on you. Once you feel comfortable, have a conversation about your disability with a prospective partner, but initially, let them see you. Our disabilities may be an integral part of us, but they don’t define us, and just like we carry false preconceived notions about disabilities, so too will prospective partners. After your prospective match swipes right, ease them gently into understanding your disability – if they don’t respond well to the discussion, remove yourself from the discussion – your wellbeing should always come first.
Finally, if you don’t treat your disability like it’s a tragedy, they won’t either. Confidence is the sexiest trait a person can own. Confidence is not a constant state, but if you invest in negative thoughts about yourself, they will be realised. Invest in valuing and being confident in yourself, because that’s what you deserve.