Kieron D’Netto: Lived Experiences with Sexuality and Disability: My Story Thus Far

Going from a normal 17-year-old male lifestyle, being a very sexually active and affectionate individual, exploring all the desires a man could want to have with his partner and himself to becoming completely paralysed from the neck down, waking up in ICU and realising you’re unable to even bring your hand up to your nose to scratch it was an extremely devastating reality check. Knowing what I was not going to be able to do again and new things I’d miss out on doing intimately and sexually, being an individual with a very strong sexual appetite, this was incredibly daunting to consider. 

Having that sexual experience prior to my injury, I knew how to have sex but my unknown now was how to go about having that life. Being paralysed from the neck down and initially having no arm movement, there was, and still is so many aspects to consider in achieving this; did my ‘equipment’ work, was I still physically able to have any sex, how will being in this physical state of paralysis affect my body, how will I be able to self-pleasure, how to seek a partner willing to explore that with you being outside of the “norm”. A large faucet I continually have to consider is all the small things we take for granted, such as when being physically able to self-pleasure at any time, go out on a spontaneous whim whenever and wherever to try your luck in finding someone to have fun with, missing out on those special moments being able to reach out and hold a partner’s hand, caress and cuddle them, passionately and intimately, touch them, as simply as brushing their cheek as you want a kiss. All those things were taken away.

Whilst in the Spinal Unit at the hospital after breaking my neck, there were brief sessions that went over how a SCI affects your body. However, every SCI is different, even at the same level of injury and as such these sessions weren’t very informative on how go about having a “sex life” again. They mainly were a blanket statement on ‘this is how your body will or may work from now’. I was left to try and find all this out myself.

Being a high-level quadriplegic, my independence, spontaneity, and social life completely disappeared. My day to day is hardly a shadow of my former life as I am now completely reliant on someone to be my hands 24/7. I constantly need someone with me; to feed me, toilet me and help access the community. There were and are many hurdles and brick walls in trying to achieve having that social life again. 

 I initially had no funding to access a support worker to be able to go with me for social outings unless family (my mum) was able to drive me out somewhere to friend’s places. After just turning 18, and although my friends were very close with my mum, as a young male you don’t want your mum out with you when you’re wanting to get up to mischief in all forms! As much as I appreciated, I had a mum willing to sacrifice her time so I could get out, it wasn’t her responsibility to do so. So, other than catching up with friends at their social gatherings or functions my social life died and all that interaction and networking with new individuals was gone. My desire to go and meet new people and date was still very much there but was taken away from me, due to my situation with my disability. I also can’t stay out late at night due to requiring support workers to be rostered on to assist me to bed, so nights out are always cut short.

My first concern in relation to sexuality and intimacy was finding out If my privates still worked. It didn’t take long to find out! With having to have nursing staff wash your privates it can result in an awkward situation if you can’t let it fly over your head! Also, things were physiologically different with my level of sensation. I wasn’t able to create psychogenic erections anymore, it was only from physically touch. Learning if my body could still reach a climax and ejaculate was a lot more difficult to try and explore and unfortunately took many years to discover and find out.

Now I’m not gloating or being egotistical, but before my injury I had no problem getting a girlfriend. I started dating younger than most my age and was well ahead on a lot of experiences, which I’m very grateful for now in hindsight after my injury. Even though I was still confident in myself being in a wheelchair, it was extremely hard to find anyone that could see past the wheelchair and all its baggage. The wheelchair acts as blinders for people; they see only it and are unwilling to get to know “me” the person I am a young energetic man with zest for life, goals, dreams, cheek, fun, wit, humor, intelligence, affection, and desires.

On the occurrence I was able to have friends take me out, I’ve found women out in public never look at me as a desired partner or even a fling. I have found, especially being in a power wheelchair and reliant on assistance for certain things, I was immediately looked at with a stigmatized mindset. Which is very disheartening, frustrating, and deflating to my self-image and confidence. It didn’t deter me from continuing to seek a partner.
Not giving up, I tried the whole online dating scene which was just as futile as in person due to the ever-shallower world we live in, but it did open opportunities of dialogue between a few women. They were mainly curious about how I went about things sexually, which I hadn’t had chance to fully explore after my injury, but I could inform them of what I knew about myself. It was at this moment I decided to seek the services of a sex worker who had experience with individuals with disabilities.

After a lot of research and contacting industry professionals, I settled on one who was the most comfortable seeing me and didn't cost a fortune! I never saw myself having to pay for intimate interaction just to enjoy those moments once again, or even to find out how things would work logistically and physically, let alone such a financial outlay to facilitate it. 
The woman I chose was a lovely individual, with a lot of compassion and understanding towards my situation; we will call her Kate. Kate had never been with someone with a disability as high level as myself, only paraplegics. I reassured her everything would be fine and guided her through things to be aware of. I was still extremely nervous at this point, but we were both able to support and comfort each other as we learnt how to go about things. It was an amazing experience with a lovely individual, unfortunately I didn't reach the point of climaxing. I figured my inability to finish was related to the amount of time that had passed since my body was able to experience this (8 years) and I had to get used to the process both physically and mentally. 

Even though the first time was not as successful as I would have hoped, I enjoyed having that companionship in my life again. I arranged another play date with Kate knowing that this was something I was unable to afford on a regular basis. Being forced to live on the disability pension I am on an extremely tight budget, where every dollar counts. 

Kate and I had another rendezvous and now we were familiar with each other and knew what worked and what didn't, we were able to relax and just enjoy the moment. To my surprise it was a successful night and after 8 years I was able to reach the high of climaxing and afterwards we laid there talking. Kate confessed she felt disheartened she couldn't get me to that point the first time, I reassured that it had nothing to do with her as it was just my body having to get use to that stimulation and activity again. We remained in touch but due to my financial situation I was unable to see her regularly. Kate was understanding and accepting of this, but I was not. My sexuality had finally been reignited after our first meeting, and this only made me want to get back out dating. I yearned to find that special someone who could fill that void that had been growing over the last eight years. 

Once again, I tried online dating, and found someone actually interested in me. We met up for coffee and a chat, which turned into a 4-hour conversation! We really seemed to click and have a lot of common ground but unfortunately, she didn't feel as strongly about me as I did with her, so nothing eventuated romantically but we remained good friends. 
I continued to talk with individuals interested and eventually started talking with a woman who was keen and curious from the get-go. We talked for days over the phone before being able to arrange a day to meet. Over a nice lunch we enjoyed getting to know each other more and I was able to answer any questions she had about my lifestyle. She asked if I was free that night: I wasn't expecting her to be so forward and eager even with the banter we'd developed for a week. I invited her to my place in the evening for dinner and then see where the night took us.  She had never been with someone who had a disability but was more than comfortable for me to guide her through things. I walked her through what to be aware of, such as being cautious of my supra-pubic catheter and muscle spasms. We had an absolute ball together and continued to see each other, but after a few weeks when I wanted to pursue something more serious, she slowly pulled away and I didn't hear from her. I didn't think she would be deterred from me wanting a relationship, and I definitely didn't expect to see her disappear. Had I known I would have happily communicated more to know what she wanted. So, there I was, single again, completely gutted and nearly at a point of giving up all together. This shattered my spirits significantly, but I knew I couldn't give up. I deserved to be happy. I just had to find that special someone that could accept me with all my flaws.

I kept looking for love - to no avail - and then had a major hospitalisation in 2018. I was suffering with a severe Autonomic Dysreflexia episode. I had a blood pressure in excess of 250/140 with a pulse rate of 41. I was rushed into emergency with an impacted bowel. The doctors and nurses were able to stablise me temporarily but, unfortunately I couldn't get my body back into it’s routine. The bowels kept impacting and I was suffering from Autonomic Dysreflexia every second night. My specialists tried multiple stimulants to get my body working again, but the ongoing Autonomic Dysreflexia meant the chances of going into cardiac arrest or having a stroke were too high. Ultimately, I required emergency surgery for a colostomy. 

This was my lowest point in life. I physically and emotionally hit rock bottom. Not only did I lose the "normality" of using the toilet but I also lost 90 percent of the strength and movement I had regained after my injury with the intense physiotherapy I was doing for 11 months. I now had to adjust and accept that I had a bag on my abdomen connected to my intestine which only made me look more "disabled". I felt more stigmatized than ever before. I was finally getting back into dating, and this happened! My thoughts were: “it was difficult enough finding a partner before, who would want to be with me now". I nearly gave up on life all together, which wasn't like me. Even when I first woke up in ICU after my accident I took responsibility for my actions and just wanted to move forward in life and make the most out of it. Now I didn’t want to do anything or be anywhere. My self confidence and self esteem where completely gone. It took me 2.5 years to dig myself out of that mental hole and slowly learn to accept myself as I am now and try and build the confidence to feel worthy of a woman again.

Due to how I was feeling about myself, I wasn't ready to put myself back out there. I decided to seek the services of a sex worker again as Kate had retired from the industry. After more research, I emailed the sex worker that caught my interest the most – we will call her Hannah. Hannah and I corresponded via email to cover as much detail as possible so she wouldn't be concerned when meeting as she did not have experience with working with people with disabilities. I was so nervous and scared having the colostomy, and not knowing how that may affect intimacy, but Hannah put me at ease very quickly and reassured me it was not a problem or issue. "We're all human" she said, and this didn’t concern Hannah at all. I was so grateful for her being so understanding, compassionate and open minded. She really helped in me digging myself back out of that hole I was in and ready to take life by the horns again. 

In 2021, I also engaged the services of a Sexual Health Nurse, as it had been years since being sexually active. I wanted to discuss concerns I had, goals I wanted to reach and get help in rediscovering my body again. I am very fortunate to have one that is so open, relaxed, informative, and supportive of me achieving the sexual goals and desires I've laid out for myself. This really helps me feel comfortable in completely letting go and pursuing every want and desire. I've come to realise now that life is too short! 

I've joined a raunchy body positivity group which is filled with amazing people that are very supportive and is opening doorways such as get togethers at the pub and meeting individuals who've shown interest and I'm excited to pursue this and see where it leads. 
So that's were I am currently with my life in relation to learning to express myself sexually, pursuing intimacy, growing with my situation and disability and trying to find my partner in crime.

Thank you Kieron for sharing your story with us!

If you would like to share your story or contact us, please don’t hesitate to reach out!