This Is How I Have Sex

“I found out early that I’m not always good at using my fingers, but I am good at using my tongue. So why not focus on that and try to get good?”

Research and charity organizations have dedicated a heartening number of resources to studying—and offering support to—those living with cerebral palsy (CP). CP is a rare disorder which may lead to vastly varied effects on a person’s lifelong balance, movement, and muscle tone and control. Yet for all the support and information out there, almost none of it explores how CP can affect an individual or a couple’s sex life.

This is not an unexpected research gap. It is representative of society’s tendency to desexualize disabled people—to see them as weak or pitiable and therefore infantile and impotent, objects of sympathy and care but never of sexual interest or agency. But it is a glaring gap. In a number of recent studies, adults with CP told researchers that they do have normal sex drives and desires. They have also said they lack support in learning how to navigate the complications their CP can cause in sex, not to mention the social stigmas about CP that affect the views of many in the dating pool. This lack of sexually focused research, education, and general support seemed to be a major source of discontent for many involved in these studies.

Thankfully a few people with CP, like Daniel James, Ryan Haddad, Spencer Williams, and Vix Jensen, a couple of organizations, like Cerebral Palsy Scotland, and even the disability-friendly sex toy maker Sportsheets, have in recent years started to fill that knowledge gap. Together, they have shared personal stories and compiled and spread the small amount of medical information about the intersections of sex and CP.

These resources, while limited, highlight how diverse the experience of sex with CP can be: Most people with CP experience some issues with balance and positioning, fatigue, or pelvic floor muscle tone, not to mention spasticity and stiffness in their joints or muscles. For some, these issues are minor, maybe even functionally inconsequential. But for others, they limit the positions or acts they can engage in, or require clever fixes involving, say, pillows and harnesses. Almost everyone, though, reports struggling with self-confidence, the idea that they are desirable and worthy of sexual pleasure, in the face of relentless cultural desexualization.

Still, most discussions of sex and CP focus on the experiences of the individual with the condition alone. As the saying goes, it takes (at least) two to tango; in any sexual relationship, be it short- or long-term, involving an able-bodied and disabled person, both parties have to figure out how to navigate sex together. To shed a little light on how this two-way navigation and exploration can unfold—keeping in mind the caveat that everyone’s sexual experience, especially with a condition as complex and varied as CP, is unique— VICE recently reached out to Alexander Presthus, a man with CP, and Christina Casetti, his long-term able-bodied partner. They told us, in detail, about how they initially felt out, built up, and now manage their sexual and intimate life together.

Alexander: [I started thinking about how my CP might affect my sex life] in my early teens, or even a little before. It was quite evident that girls didn’t see me as a potential love interest. For the longest time, I thought I would never find anyone. I thought no one would be interested.

When I was around 20, [I realized girls could be interested in me]. It takes people a certain amount of time and maturity to get used to the idea of something romantic with a disabled person. So around that time, girls tended to be more open to me, whereas before, they were completely off the idea. I had my first kiss when I was 20—in a hospital, actually, so very romantic. That’s when I started to gain some confidence. After I started gaining confidence, it was easier to get the interest of a woman. It snowballed from there; I got my first regular girlfriend when I was 22. That experience solidified my confidence in being able to have a fairly normal sex and romantic life.

But fine motor skills are not my forte. When it comes to sex, positions that are more adventurous are a no-go. And I noticed that people thought I was fragile. They were afraid something would go horribly wrong during sex, or thought that they would hurt me or something like that.

Still, as I got more confident, I got less scared about what other people would think. So I got more honest and open [about my CP and sex]. But I wouldn’t mention it much because I didn’t want to make it a bigger deal than it was.

Christina: Yeah, [when we were getting involved], you just said, “I have CP.” Oh, okay.

[Before I met Alexander,] I’d just had experiences with able-bodied people. I study medicine, but everything in those books is just so sterile. So I’d never thought about the sexual [side of things.]

So when he said, “I have CP,” well, first, I hadn’t noticed because we met on Skype and he was sitting so it didn’t really show. But I didn’t know what to expect. Then I read [about it, including an article he’d written on sex and CP,] so I had a bit of insight… But I felt lost, because it was entirely new. And when I tried to find things out, I didn’t find many resources. Everything was for parents and caregivers [of children with CP]. I would have liked to talk about sex and CP with someone who was not him and say things [that I was feeling but] that he might perceive as negative. I don’t want him to be sad—especially if he’s the problem, so to speak.

But I didn’t have any expectations [going into sex]. I just took what came and said, okay, if we work, we work. I also learned from him that there’s always a solution. And we found them.

Mostly, I just wanted to keep things natural with him, like I had with other people before him, and to find out together what we could do and what we liked and talk about it.

Alexander: I don’t think we talked much before [the first time we had sex].

Christina: We did talk a little bit about things you could and could not do. One thing that stuck with me was you not being able to put the condom on and needing the partner to do it. I’d never done it before and I was a bit scared. But that and other things come more naturally to me now.

Not just in sex, but in general, I would tend to overstep and do things because I’d think, oh, he can’t do it. But then I’d learn, oh, he can. Everything else, though, we talk about [in the moment] and decide if it’s better if he does it, or if I do it. With the condoms, though, it’s always me.

Alexander: It’s just more practical.

Christina: But he tells me things, and I listen.

Alexander: Which is a great improvement on the majority of the population, because they don’t listen. They have a preconceived notion of what they should do [with a disabled person]. People either tend to be overbearing and do everything for you, or they’re over-afraid and don’t do anything.

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