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This is how we do it: ‘His disability might change the sex we have, but we’ll adapt’

Jayda, 26

We can lay naked together without having sex, or we can have sex, and I never have to worry about feeling vulnerable

I often lose the desire to have sex a few months after meeting a partner. In my last relationship, we didn’t have sex for about two years – I found myself just wanting the romantic things, not the sexual things. At the time I didn’t have the words to explain that feeling, but I now consider this part of my asexuality. But I do believe our sex lives changes as we grow and meet different partners.

Syd and I met five months ago, and currently have sex about three times a week. We have a lot of non-sexual intimacy, which is extremely important. We can lie naked together without having sex, or we can have sex, or we can do any of a variety of things together, and I never have to worry about feeling vulnerable. That’s been the most important component in maintaining a sex drive with him.

The sex we have makes me feel good. But even more than the physical pleasure of sex, I’m enjoying the emotional pleasure of feeling really connected with my partner.

We joke about how it’s assumed people with disabilities can’t have sex, because Syd is the more active player in our bedroom

We tend to keep it pretty vanilla. I like to call it missionary-plus type positions, sometimes the more passive partner lying on their back, or doggy style, or oral. We always kiss and cuddle first, and we’re big fans of skin-to-skin contact. We tend not to have sex for very long, which I find really nice – 20 minutes max from start to finish. More than that and I start to get sore. It’s the right amount of time for me to feel connected with him.

Syd has motor neurone disease and he walks with crutches. We joke about how often people think that people with disabilities can’t have sex, because he’s actually the more active player in our bedroom. One of the challenges is that occasionally he will overheat, so sometimes we have to take little breaks in the middle, which is actually nice – you get to catch your breath. He can also get big knots in his shoulders, so one of our lead-ups to intimacy is just massaging each other.

He will continue to lose the ability to do certain things. The disease will never affect his ability to get hard, but it might change the sex that we have. It is going to mean that I need to get better about being on top. Syd doesn’t know what his future will look like. He figures he’ll make it work, and I think he’s right. We will just adapt to his changing needs, in the same way that he adapts to mine.

Syd, 28

I don’t fit the normative idea of masculinity – and that attracts people who are looking for something different

When we first started seeing each other, Jayda warned me that her sexual drive would go down, but that hasn’t happened. I was concerned that she would want something that physically I can’t provide, which was the biggest mental hurdle for me. But with time and open communication, I’m not worried any more. We receive and give love and affection in compatible ways.

Jayda has used the term “vanilla-plus”, which is accurate. I enjoy penetrative sex, and I do try to focus more on my partner. It’s not super long sex, and as the relationship goes on, we’re becoming less spontaneous as we navigate our schedules. But we have sex three or four times a week, which is a good, healthy amount for me.

I’ve had sexual partners who said, ‘Oh, wow, I’m surprised you were able to have sex’

I’m a physically disabled man, which makes me unconventional in a lot of ways, so I don’t fit the normative, hegemonic idea of masculinity. I think that attracts people who are looking for something different. My disease hasn’t affected the way I have sex, more the way I date. I’ve had sexual partners who basically said, “Oh, wow, I’m so surprised you were able to have sex.” That definitely hits your confidence.

Like a lot of muscular diseases, mine is ascending – starting at the feet and working its way up. Most of my impairment is still in my lower body which isn’t super important if you have penetrative sex and you’re male. It’s when my core and abdomen get affected that things will be forced to change. But I think if you’re in a relationship with someone, and they love you and want to have sex with you, you will try to make it work. Though Jayda is more concerned than I am, in part because she’s only dated me for five months and I’ve been living with this muscular diagnosis for half of my life, so I’ve made peace with it in a certain way.

I don’t like to try to predict how things might turn out, because no one knows how fast it will progress. I just have to adapt to things when they happen. It’s more how people treat you out in the world. There’s a lot of prejudice against people with disabilities; if I become impaired to a more severe degree, will that get worse? If I was single, would I even be able to find a partner? I will always have to deal with these considerations, and of course it affects your self-esteem. But Jayda’s been a breath of fresh air.