We Need to Talk About Sex
I became a complete paraplegic six years ago; I was married with children and our lives were thrown into a spin.
A spinal cord injury is a life changing event. Discovering I had lost the use of my bladder and bowel, as well as sexual function filled me with immense shame. It was hard enough to deal with bladder and bowel dysfunction that I shut down any sexual desire or need for intimacy. I hated seeing my reflection in mirrors; I just couldn’t relate. I no longer felt like a woman, but rather, a thing. Sure, I could have sex, but I couldn’t feel anything. I had no libido whatsoever.
A spinal cord injury places huge strain on a marriage. Mine was struggling before the accident and didn’t survive afterwards.
Around the time of my discharge from hospital, I spoke to a sexual health nurse who asked if I had any questions regarding intimacy. My shame around this very valuable part of my life stopped me from asking or exploring.
While I was in rehab, I attended a WoT Day, but not any others afterwards as I live a number of hours’ drive from the Royal Talbot in Kew. But as a way to figure out how to move forward, I enrolled in the volunteer peer support program and attended a three-day training session. Soon after, I was a member of the panel for one of the WoT Day’s. Most patients at this time were male, and the majority of them were under 25. I talked about my experiences and held a small informal group chat, but we did not discuss sex or intimacy with a spinal cord injury.
I have now adjusted to life in a wheelchair and things are pretty darn good. I’ve kept fit and am a proud mum to my children. I try to provide support for those experiencing hardship, particularly those new to the SCI world. I have hobbies and passions, and do some public speaking about life’s challenges and the importance of courage, which I get a lot of satisfaction from.
" Discussing intimacy with a disability can be uncomfortable, but it doesn’t have to be. Sex and intimacy are a normal and natural part of life."
If I could choose to regain one ability, it would definitely be the ability to orgasm! I also yearn for those long, heart-to-heart hugs I miss because I am seated all the time. Intimacy isn’t always sexual, and my kids are now at an age where it’s not cool to hug your mum! :(
Sex and intimacy is a normal and natural part of life. It’s nice and fun! Although quite often a taboo subject depending on our culture, religion or upbringing.
Understandably when you ask questions in relation to this subject it can and does make people uncomfortable. It doesn’t have to. Spire recently held a workshop with two amazing ladies, Vanessa Hamilton, a sexual health nurse and educator from Talking the Talk, and Victoria Chipperfield, a sexual health nurse and educator from Stabilise. This provided me an opportunity to start talking about this subject area. Victoria also specialises in sex toys for those with disabilities, and I also discovered there are many sex toys available that can be modified for grip challenges. I am yet to find an option for my situation, but I’ll keep trying ;) We also discussed personal experiences and got advice from each other. It was an invaluable experience, and interesting that I was the only female with a disability.
Victoria also informed us of a Sexuality and Disability Expo which I expect to attend, and was later invited to be part of the panel discussion. Attending the SexedUP Expo, I was especially interested in a talk given by a sex worker who specialised in facilitating sex and intimacy for people with disabilities. She travelled the world educating sex workers on the topic. It was incredibly fascinating and judgement free.
Although the Expo was predominantly about facilitating sex and consent with those born with a disability, and focused on the logistics around consent and aged parents caring for disabled children, it normalised the different ways to obtain intimacy and sexual gratification with an injury.
Society doesn’t always consider people with disabilities as life partners, and there are vulnerability and safety risks involved with casual dating or tinder hook ups. When exploring options regarding sex workers, there are very few males to accommodate females, but an abundance of females or non-gender specific sex workers. Why?
As part of the panel, Kevin Stone from Valid Inc., and Rochelle Collard from the Disability Services Commissioner’s office discussed the vulnerability of people with disabilities and the possibility of being taken advantage of. I shared the SCI story of acquired injury and my inability to achieve orgasm in the usual way. I was surrounded by professionals who specialised in sexual health and disability, but no one had addressed this at the Expo. It was interesting to note that an Occupational Therapy university lecturer disclosed that it had been recommended sexual satisfaction be included on patient questionnaires.
Depending on one’s culture, religion, or upbringing, sex and intimacy can be taboo topics. Discussing intimacy with a disability can be uncomfortable, but it doesn’t have to be. Sex and intimacy are a normal and natural part of life. These are enjoyable, fulfilling and fun!