This article originally appeared on VICE US.
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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Christina: But the first time we had sex, I just said, okay, let’s see what happens. We just tried and talked during it and then we talked after sex each time if things didn’t work out.
Alexander: I don’t think I mentioned it to you, but with previous partners, I would mention [before we ever had sex] that I can get very bad spasticity. It’s not the best, when you’re having sex, to suddenly have your leg cramping. That might freak some people out. When it happened with you at first, I didn’t say anything. I think I told you afterward.
Christina: You hid it.
Alexander: Yeah, I’m very good at hiding it.
Some things are challenging in sex, though. Anything that has to do with fine motor skills, like [thrusting my ] hips, for example.
Christina: You got better at that. He found a way to move his hips I hadn’t experienced before.
Alexander: Practice makes perfect. Since I was born with CP, I’m used to just figuring things out.
With my fingers, my fine motor skills aren’t the best, so I try to figure out solutions for using them.
Christina: What impressed me was, you said, "well, I can’t always use my fingers, but I can use my tongue." And I was like, yeah, okay, I don’t mind. And it’s true, he can.
Alexander: That’s part of finding solutions. 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?
And with some positions, it’s like, okay, let’s try some things and if it doesn’t work, let’s stop and change our plans. I’m 32. I’ve had enough experience, I’m practical and I don’t mind that. But when I was younger, it terrified me, trying something and it not working out. I felt so embarrassed. Luckily, my first girlfriend liked to take control. She’d say, this isn’t working, let’s try this instead.
My CP does affect spontaneity, though. I’m not a person who would have sex in a public bathroom, really. But that, for example, would be impossible.
Christina: Because I have to insert his penis; he can’t with his hands. It would be hard for me to balance.
Alexander: And, like, sex in a shower is probably nice.
Christina: We tried. It was one of the first things we did. But I don’t know, the angles …
Alexander: The biggest issue for me with disability and sex is how I’m perceived by society. I notice that a lot. We’ve gone places together and people assume I’m her brother.
Christina: Or people assume, oh, he’s your friend. Or that I’m a caregiver. Or the old woman who stopped in the street to look at us. It’s even worse now that you’re using a wheelchair.
Alexander: When I was younger, it tore my self-confidence apart. Now, it doesn’t bother me as much, but I would be lying if I said it doesn’t get to me at all. If you are constantly treated as an abnormal person without a sexuality—if people assume you can’t have a romantic partner and your partner is your caregiver, while you know, if you were able-bodied, they wouldn’t—it does get to me.
My first girlfriend told me that she got a lot of grief from her friends for being with me, like, "you could do better." She said that was the hardest part for her.
Christina: I get annoyed. I have problems with the kind of people who go , "_but he can’t do things for you." They assume I do more than I do; he’s pretty much self-sufficient. My mom is afraid for when we’ll have children—how we’ll deal with that. My dad is a doctor too, so I think he thinks Alexander is worse off than he is. Then other relatives are like, "why are you getting married to him? He’s so fragile _." Blah, blah, blah. I really wish people would listen to me and look at us and the fact that we work. We have been working for four years and we want to continue to work. But no, it’s too hard for them to stop, listen, and try to understand how I view him and how we work.
It got to me in the past, because I started thinking, what if they really know something I don’t know and I’m being naïve and it’ll turn out they’re right and I will limit my life more than I think?
But you overcome many things in life. I found out that I have urinary retention and the doctors don’t know why. I have to use catheters now, and that impacted our sex life more than your CP. Before the catheters, I would always have a full bladder, so it would be uncomfortable for me to have sex. Then the catheters were a problem; they would get stuck and no one could tell me why and I would hurt myself and there was blood all the time and infections. So the last thing I wanted was to have something near my urethra. We had to accommodate more for that.
Alexander: If you close your mind, whether you have CP or you’re able-bodied, when thinking about sex or a relationship, then you risk losing a big part of your life—on both sides.
Christina: If you like someone, just go for it. I don’t know, why not? We tend to stop ourselves from a lot of things because we think, what if, what if—I do it a lot with other things in my life.
A lot comes from society and what we’re led to expect. I had a period of time where I was afraid my feelings were a mom complex. Oh, he’s so sweet and weak and I have to take care of him. Which, oh god, no. But I think that’s just how we’re trained to think about people with disabilities.
There will always be things we don’t know and have to learn in any [sexual relationship]. You just have to be open about what you both need. If he had said, I need you to clean me, that might have been scarier to me, but I would have been prepared.
Alexander: I have friends with more severe CP. They need help showering. You can start to have very few intimate zones left, and as a couple that can really impact your [emotional and sexual life]. You erase the barrier between care and intimacy. There’s nothing left. That’s why I, personally, would get a third-party caregiver if I ever needed more care like that.
Christina: I am lucky, because he knows himself and can communicate and we can make it work. I know I am lucky, because not many people are so aware and able to communicate about their sexuality. So it’s easy for me, because I am me and he is him.
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