Valentine’s Special: Part 2

Dating & Disability ~ Q&A

Four men with different forms of muscular dystrophy answer questions on body confidence, dating, sex and relationships…

*Names have been changed

1. Do you identify as a sexual being?

Dave, 38, Duchenne MD: “I absolutely identify as a sexual being. I actually have a very high sex drive and it’s an important driver in my life.”

Brian, 51, SMA: “Absolutely. I’ve always had what would be considered relatively high sex drive.”

Tom, 27, Unspecified Neuromuscular: “I wouldn’t describe myself as asexual, but I’m not a sexual being either really. The more my condition has progressed, the less sexual I’ve felt. Procedures like catheterisation and serious illnesses have made me feel like I’m not at home in my skin.”

Steve, 28, Duchenne MD: “I believe I’m a very sexual person because I get the cravings and intense visual thoughts that consume my mind.”

2. How does your body confidence (or lack of) affect your sex life?

Dave, 38, Duchenne MD: “My body confidence is quite good. I am aware of my limitations and the ways in which I don’t conform to the normal stereotype, but it doesn’t really bother me and I don’t think it restricts my sex life. Attraction is a very strange thing and you never know what others will find attractive. I’m sure some people will be turned off by my body, but equally someone will be turned on by certain aspects.”

Brian, 51, SMA: “It affected me more when I was younger. In fact, I remember one of the very first moments I realised I was different. On a family holiday whilst in my early teens, I was getting changed in the hotel room before going out for dinner. I saw my profile in the bedroom mirror and realised my body was not ‘typical’ – the scoliosis of my back and the thinness of my legs. This led to a lot of problems with body confidence, which I covered up with layers of fashion. It probably led to overcompensation with cultivating a colourful personality.”

Tom, 27, Unspecified Neuromuscular: “My body, especially naked, looks ‘weird’, which makes me self-conscious. I then feel less comfortable having sex because I’m aware of this. I prefer to be the clothed partner in general, because I fear losing control. I worry about things like unexpected bodily fluids. This makes me unable to relax and enjoy having sex.”

Steve, 28, Duchenne MD: “My body confidence doesn’t have anything to do with my sex life but I’m not confident about my body whatsoever.”

3. Have you tried online dating? What are your biggest concerns/challenges when it comes to dating? Do you disclose your disability?

Dave, 38, Duchenne MD: “I have tried online dating on and off, with a little success but mostly rejection. Every so often I would go through a period of giving up on ever finding anyone, but now I’m in a relationship. I’ve always been very upfront and open about my disability from the very beginning. It’s either going to be a problem for people or it isn’t. I don’t see the point of waiting to find out. Yes, that means I’ve had less interest, but at least I know when the interest is there it’s genuine and not going to disappear.”

Brian, 51, SMA: “I’ve dated using online methods and people I’ve met spontaneously. Being a heterosexual man, I don’t really have a type as such. I am interested in creative, intelligent and funny people. I am on my 2nd marriage and we’ve been together for 12 years. When I was younger, dating always felt more like a job interview than an enjoyable experience. I’ve been stood up, ignored and even worse. It was when I decided to change my attitude towards dating that I began to have more success. I tried to see it as a night out and an opportunity to get to know an interesting person with no expectations.”

Tom, 27, Unspecified Neuromuscular: “My wheelchair is a bit of a giveaway! I do have the conversation with potential partners about the ways illness affects me. I’ve tried online dating apps without much success. I’ve had the best luck with finding people online, becoming friends and then dating them. I worry that people would see me and think I’m not a long-term option because of my disability.”

Steve, 28, Duchenne MD: “My dating experiences have been heartbreaking and abusive. All the women I’ve dated in the past have taken advantage and cheated on me, all from meeting online. Dating online is horrible in my opinion because of the bad experiences that I’ve had.”

4. What frustrates you most about dating?

Dave, 38, Duchenne MD: “Having to take a leap of faith and share aspects of your life that are complicated, with someone that you barely know. It’s a big issue building trust with someone and I hate having to start from the beginning and get them used to what my life is like. With a disability like mine you can’t introduce it gradually. It’s a permanent feature of my life from day one. I also don’t like having to negotiate how to manage with carers when on a date, I usually have to discuss this with the person in advance. It’s a lot to deal with at an early stage.”

Brian, 51, SMA: “I hated the Darwinian nature of dating. A lot of potential dates would say one thing but then date a guy who was 6 foot 2 with an IQ of a house brick. Dating when you are disabled takes stubborn, single-minded determination and the motivation to press on is not always easy to find.”

Tom, 27, Unspecified Neuromuscular: “People play games. If you’re not interested in me because I’m disabled that’s fine – I’m tough enough to hear that – but I find it hard when people equivocate.”

Steve, 28, Duchenne MD: “A lot of women are not genuine, sincere, or empathetic. They have ulterior motives that make them selfish and heartless. Most of them don’t have any morality.”

5. What do you look for in a potential partner? Do you actively seek an able-bodied/disabled partner/someone with a similar disability to your own?

Dave, 38, Duchenne MD: “I do place some importance on looks – I have to feel physically attracted to them, and it is important to me that we can have sex. Because of my own limitations, that means the other person needs to be ‘able’ enough to compensate (recognising that I wont know whether they are until I ask someone). I do appreciate the irony of the discrimination, but this is purely a practical consideration! Beyond that, it’s all about personality. They have to be relaxed about the complexities of life, fun, and intelligent.”

Brian, 51, SMA: “I’ve dated both disabled and able-bodied women, and I’m sad to say I have faced as much prejudice from the disabled women as the able-bodied. I seem to be largely attracted to independent, strong, creative women with a sense of humour that matches my own. Body type is almost irrelevant.”

Tom, 27, Unspecified Neuromuscular: “I don’t actively seek out disabled or abled partners. The advantage of a disabled partner is them understanding where I’m coming from and us connecting on a level where we share these experiences. The advantage of a non-disabled partner would be their potential ability to help with hoisting me, which would enable us to do a lot more together than if we were reliant on PAs (personal assistants/carers).”

Steve, 28, Duchenne MD: “I don’t really have a preference. I look for women who are positive, upbeat and have similar interests to me. Whether they are physically disabled or not doesn’t matter to me.”

6. What were/are your biggest concerns prior to losing your virginity?

Dave, 38, Duchenne MD: “My biggest concern was doing it ‘right’ and not being embarrassed.”

Brian, 51, SMA: “My concerns before losing my virginity were always physically based. I was concerned that my shortening ligaments would mean I wouldn’t be able to physically have sex. I was concerned about the emotional effect on an able-bodied partner being with someone with a shortened lifespan.”

Tom, 27, Unspecified Neuromuscular: “Pregnancy, I guess. Disability didn’t really play into it much back then, but I was still ambulant at the time. I was using crutches and needed some support, but was a lot less reliant on a partner adapting the sex to my abilities.”

Steve, 28, Duchenne MD: “I was afraid I wouldn’t be able to satisfy her and would therefore be a disappointment.”

7. Do you think your first sexual experience was more challenging/awkward purely because of your disability?

Dave, 38, Duchenne MD: “No, I think it was awkward because it was my first time and I was a teenager. I think it helps that I was with someone else with a disability, and my own limitations were not as great back then.”

Brian, 51, SMA: “My first sexual experience was with a girl who had the condition Friedreich ataxia. Therefore neither my disability or hers was of much concern from a self-confidence point of view. It was more the logistics of finding a position that worked. There were a couple of occasions where she almost ended up stuck on the floor, naked with her legs straight up in the air after to try to transfer from her chair onto my bed by herself!”

Tom, 27, Unspecified Neuromuscular: “Not really, but my condition was far less progressed then.”

Steve, 28, Duchenne MD: “I was worried about my physical limitations and that made me more nervous than I probably would have been ordinarily. It was all over very quickly. I did not have fun. She called me prick and left, never to be seen again. So I don’t think she had fun either.”

8. What are the most common misconceptions you have faced?

Dave, 38, Duchenne MD: “I don’t really encounter many because I include in my profile that everything works in that department. It’s a bit disappointing to feel I have to do that. Sometimes people ask what I can do and I tend to answer quite frankly. I don’t really leave much room for assumptions.

One issue discussed in the disability community is that of devotees. I’ve had a mixed experience. Some are only interested in getting themselves off and see the disability as a fetish. But other devotees are simply attracted to you as a disabled person, in the same way that someone might be attracted to tall people. The important thing for me is to recognise that different people are attracted to different things. It is only a problem when that attraction is the only thing that interests someone about you, or becomes an obsession. My suggestion is to be careful but open-minded, in order to open up new and amazing experiences.”

Brian, 51, SMA: “The most common misconception would be amongst able-bodied women not realising I’m a sexual animal. They would then be shocked when I started flirting outrageously with them.”

Tom, 27, Unspecified Neuromuscular: “People assume that I’m willing to be their ‘try it and see’, or that I don’t have needs, preferences, or desires in bed because (from their perspective) I’m so desperate, I’d take whatever I can get. Alternatively, it just doesn’t cross their minds that no matter how hard I flirt, they fail to realise I’m hinting at us getting together.”

Steve, 28, Duchenne MD: “People have asked if I’m able to get an erection. I think many believe disabled people are asexual and incapable of having any sexual desire. But in reality that desire for me is extremely intense. Sometimes uncontrollable.”

9. When having sex, how do you overcome the physical limitations associated with your disability?

Dave, 38, Duchenne MD: “Largely by depending on my partner to do a lot of the movement, and to assist in moving me into the position that works for us. We have had to experiment with different positions that maximise the amount of mobility I have, and try different toys to make things a bit interesting. I use a mouthpiece ventilator so I can still kiss my partner.”

Brian, 51, SMA: “Imagination, open-mindedness and being as sexually generous as I can. Occasionally, technology helps with the periodic introduction of a sex toy.”

Tom, 27, Unspecified Neuromuscular: “I tend to remain clothed, be the active partner, and do things for the person I’m having sex with. I don’t feel comfortable expressing my own needs, desires, or preferences at all. My limitations are more psychological. In terms of paralysis and joint instability, we use a LOT of pillows jammed round me to support me in the right place, then I stay still, and my partner moves around me.”

Steve, 28, Duchenne MD: “Trial and error mostly. Where there’s a will, there’s a way! It’s fun to experiment with toys and household items too.”

10. In terms of sexual intercourse, what can’t you do that you wish you could?

Dave, 38, Duchenne MD: “There is quite a bit I cannot do that I would like to, such as being able to touch my partner without having to be moved in a specific way. I’ve managed to try everything although there are certain things like anal sex that we are yet to find a good position for. We are still working on that one!”

Brian, 51, SMA: “In terms of intercourse, I wish more positions were available to me as variety is the spice of life after all. The use of my hoist helps greatly and opens up positions I otherwise wouldn’t be able to reach.”

Tom, 27, Unspecified Neuromuscular: “I wish I could have easy sex, without loads of explanation and preparation – that would allow me to have a far more normal and enjoyable sex life.”

Steve, 28, Duchenne MD: “I wish I could do the ’69’ position – that looks fun! And penetrate her when she’s in a doggy style position. I’m only missing out a little bit though.”

11. What advice would you offer to other disabled people who are sexually inexperienced?

Dave, 38, Duchenne MD: “It’s really about finding out what you can do and building trust and communication with your partner. Experiment with everything and don’t let things go stale. Keep trying new things, new methods and techniques.”

Brian, 51, SMA: “Decide what you want, don’t put too much pressure on yourself, be stubborn and tenacious. Cast your net wide and use the assets you feel you do have such as compassion intelligence humour.”

Tom, 27, Unspecified Neuromuscular: “Get to know your body first. Learn to pleasure yourself, learn what you like and how you like it. Experiment with toys if you can – they can often substitute for grip and reach. The better you know your body the more likely you are to get what you want out of sex.”

Steve, 28, Duchenne MD: “Don’t get your hopes up! sex is over-hyped. To be honest, I prefer to play video games.”

13. Are there any particularly funny sexual episodes you’d like to share?

Dave, 38, Duchenne MD: “There have been a couple of times a PA (personal assistant/carer) has walked in at a terribly unfortunate moment when I am with a partner. I think sometimes they are just a little naive as to what we might be doing and knock and enter rather than knocking and waiting.”

Brian, 51, SMA: “I once had a nasty experience when my college girlfriend tried a new shade of permanent lipstick, ‘guaranteed to stay put all night’. Whilst dressing me, the morning care staff thought I had developed a nasty rash and called in the medical staff. Everyone stood around me deciding what was to be done about this nasty deep red rash on my penis. The college nurse produced some cortisone cream and when applied, she realised the mark was merely lipstick. This would have been embarrassing with one person in the room let alone three!”

Tom, 27, Unspecified Neuromuscular: “Nope!”

Steve, 28, Duchenne MD: “I know ’69’ is off limits for me because I tried it once. I can’t move around by myself when lay on a bed. So I was flat on my back and she sat on my face and almost suffocated me! All I could do was flap my hands around like a dolphin. She thought I was loving it and so just carried on.”


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