"It's empowering to be appreciated. It's draining to be fetishized. As a Black, disabled woman, I've had many experiences being the latter."

Maria Del Russo
August 14, 2020
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Not everyone’s comfortable talking about their sex life, but knowing what goes on in other people’s bedrooms can help us all feel more inspired, curious, and validated in our own experiences. In HG’s monthly column Sex IRL, we’ll talk to real people about their sexual adventures and get as frank as possible.

Warning: Discussion of sexual trauma and abuse in some of the below interviews. 

Think back to your sex education—that is, if you received formal sex education in school. When I was in high school, I was taught that sex was between a penis and a vagina. Oral sex and queer sex was glossed over. And not once did we discuss how sex works if one or both (or more) people involved are living with a disability or a chronic illness.

It seems like a pretty egregious omission, considering the fact that one in four Americans are living with some kind of disability and 40 million Americans are living with one or more chronic illnesses. That lack of representation in sex education can lead to some major holes in adult sexuality. According to Disabled World, an independent health and disability news source, nearly 50% of people living with a disability do not have a regular sex life, as certain disabilities (like injuries to the spinal cord) can affect the sexual function of a person. And it can lead to stigma: Those who don’t live with a disability or chronic illness typically believe that these people don’t or can’t have sex at all. It can also swing in the opposite direction, with people with disabilities being fetishized instead of appreciated for their bodies and their sexualities. 

So I spoke to a handful of people with disabilities about what able-bodied individuals tend to get wrong about their sex lives. 

“I want someone who can value the complexity of my body and not treat it as a bucket list item.”

“The biggest misconception is that because of [lupus], [some people believe] I don't have sex or I can't have sex, which is completely untrue. It may look different. It may require a different effort, but it's not impossible. My body has endured chemotherapy, surgically-placed catheters, dialysis, many hospitalizations, and the need for a kidney transplant. None of these mean I am incapable of receiving or giving pleasure. I twerk to ‘W.A.P.’; I own sex toys. I desire sexual expression as much as anyone else. I desire to be touched and validated, especially considering the trauma my body has taken.

“Too many times I have been rejected because of the catheters on my chest or stomach. Too many times I have been asked, ‘Is your lupus contagious?’ In these conversations, I find myself playing the role of educator. However, this can feel abrasive at times, especially if I don't feel comfortable getting into every detail of my health on a dating app. As a result, I have learned to exercise patience for those who don't know what lupus is and how it can affect the body. This has led to more positive moments of intimacy where my partners are invested in my pleasure. They want to know how they can help me achieve orgasm. They want to make sure they aren't applying too much pressure on my catheter, which is a refreshing alternative to the moments of rejection I am used to.

“As far as fetishizing goes, I think there is a difference between that and appreciation. It is empowering to be appreciated. It is draining to be fetishized. As a Black, disabled woman, I have had many experiences being the latter. I want someone who can value the complexity of my body and not treat it as a bucket list item. Respect my scars and wounds. My survival in this body is not one that needs to be a PornHub category. We need to normalize bodies with oxygen masks and in wheelchairs. We need to normalize stretch marks and catheters. In doing so, we uplift our stories and bring awareness.”

– Tonya Ingram, 28, currently “single as a Pringle”

“My favorite thing about sex and intimacy is being someone’s first disabled lover.”

“People wrongly assume that I can’t have sex, don’t like sex, or that I should be focusing on other things with respect to disability activism like accessibility. The truth is that I love sex as a disabled person, I can have sex even if it does look and feel different than able-bodied sex, and I believe that advocating for hot disabled sex is a form of activism. I do feel that new partners have many questions about sex and disability, and I often broach those conversations with honesty and humor. I think oftentimes people don’t know what to say or do, and I use humor to make them relax a little. That being said, I think that when people ask us the same question over and over, it can be tiring.

“I think that you can be attracted to a disabled person and you can be attracted to them because they are disabled. I don’t have a problem with that at all. Where I take issue is when the disabled person is dehumanized in the process. For example, if you’re more turned on by my power wheelchair than me, that’s a problem. But I think disability can be a sexy selling point if done with respect for the disabled person. 

“Sex education is painfully ableist. So many disabled people have been excluded from discussions of sex education. When I was growing up, I was often asked if I needed to participate in sex education. I never saw a version of myself in the imagery or literature— nothing that celebrated or spoke to the fact that disabled people have sex too.   

“That’s one of the reasons I helped co-create Handi, a sexuality and disability brand that aims to have those conversations and show those types of images. My favorite thing about sex and intimacy is being someone’s first disabled lover. There is no greater thrill than having a non-disabled person tell me after sex just how transformative and how hot it is.”

— Andrew Gurza, 36, co-creator of Handi and host of the podcast Disability After Dark, currently “happily single”

“I’m open right from the start about being disabled now, because of past experiences where partners [have] caused sexual trauma.”

“People automatically assume disabled means you can’t have sex at all. For me, people also assume there’s nothing wrong with me because my disabilities are invisible. Men think they can be aggressive during sex, [during which they] have caused injury and mental trauma to me. It’s not that I don’t like rough sex or BDSM, but I need things adjusted to make sure my hips don’t dislocate and penetration isn’t done in a way that aggravates my fibroids, cysts, retroverted uterus, or causes me extreme pain from PCOS.  

“I’m open right from the start about being disabled now, because of past experiences where partners [have] caused sexual trauma. It’s hard to be open about it but necessary to make sure I protect myself from further harm and to give a potential partner a heads-up. All of my sexual education came from self-educating through books, the internet, and trying things to see what worked and didn’t work for me. I would love to see people educated more on accessible sex and debilitating reproductive issues that I didn’t learn about until I was diagnosed with them.  

“I love being intimate and having sex. I find it’s more enjoyable with a partner who has taken the time to get to know my body and knows the difference between pleasure pain and just causing sexually traumatic pain. And doctors are just as bad as everyone else for not fully understanding the sexual needs, wants, and desires of disabled people.”

— C., 37, currently in a sexually open relationship

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“No one told me about sex or about issues like PCOS. It led to fears that I was somehow pregnant even when I hadn't had sex.”

“My PCOS has led to both very low libido and very high libido. I've had my period disappear for a year at a time only to pop up and leave me bleeding to the point of anemia for three weeks straight. That, of course, put a damper on sex because there was just so much blood that it made it impossible and uncomfortable. I've also had orgasms that triggered incredibly painful uterine cramping. 

“I was brought up in purity culture in the church and in private Christian schools. No one told me about sex or about issues like PCOS. It led to fears that I was somehow pregnant even when I hadn't had sex, or when my partner and I had used condoms. My period wouldn't come, and I had no idea what PCOS was, its symptoms, or that I had it. I wasn't even formally diagnosed until I was 31. 

“I think in general, more open sex education for students in any form of schooling would be great. Sex education that addresses the gender binary, various sexualities, how to stay safe in any type of encounter, [and] consent is important. Also, the fact that some disabled people absolutely can and do have sex and that it can be great should be mentioned more. There should also be more coverage of the various ways people with uteruses can have reproductive issues. If I had known way back then that I had PCOS, my struggles, including infertility, could have likely had some form of treatment to, at the very least, make me more comfortable in daily life.”

— Becca, 32, with her partner for six years

“I’m not going to downplay my own enjoyment for someone else to be more comfortable.”

“I can remember in high school when having cystic fibrosis made me really thin, like 70 [pounds], and guys would say stupid things like, ‘I’ll break you if we have sex.’ That is not a thing! Being sick, having PICC lines or oxygen or feeding tubes or whatever, doesn’t make someone desire sex or intimacy less.

“Outwardly, at this point, I look totally ‘normal.’ I am healthy in my chronic illness journey, but once my shirt comes off I am covered in scars—most notably a scar lining exactly underneath my breasts from two double lung transplant surgeries. That makes things like casual sex hard because anyone is going to wonder why that is there. I don’t have any IVs or tubes right now, so I could theoretically not take my shirt off and nothing would ever come up. But what fun is that? I’m not going to downplay my own enjoyment for someone else to be more comfortable. I guess being intimate can carry a level of seriousness because people have to know my story quickly. 

“Partners can tend to want to protect someone with an illness or disability when being intimate. To me, that is not a compliment. I get the consideration, but I don’t want someone constantly asking me if they hurt me or whether something is too much. It’s not. I’ll tell you if it is. I don’t think people with a disability need the protection the world assumes they do. To be honest, I am generally the more dominate one or more of the aggressor in physical situations, and to think someone is constantly worrying about me is a buzzkill.”

— Natasha, 36, currently single

“People will also sometimes forget while we're having sex and try to put their fingers in or too near my vagina, and I'll cry out in pain.”

“I have vaginismus, which very few people have ever heard of in the first place! I'm quite vocal about my sex life, so people don't often realize that I use the word 'sex' to describe things that other people would term as 'foreplay'—a term that is annoyingly heteronormative. People often assume that I do have penis-in-vagina sex and are surprised when I tell them that I can't. Even oral sex is incredibly painful at times, and I'm honestly really scared of my own vagina for someone who is so sex-positive. But to be clear, I'm not scared of my own anatomy because I'm ashamed of it but because of the pain it can cause me.

“I find disclosing my vaginismus hard because I often worry that people (cis men especially) won't want to have sex with me if they can't put their dick in my vagina. I know in the past I've told people later than I should have and probably given them unfair expectations of the kind of sex I want to have. On one hand, I don't think the standard of sex should be penis-in-vagina penetration, but on the other, I do feel like I owe people I'm going to fuck the truth about my body and my limits. Often when I do tell people this, their reaction is: 'That's totally fine; we don't have to do anything you're not comfortable with,' not understanding that I really, really want to sit on their dick a lot of the time, but I'm physically incapable of it. People will also sometimes forget while we're having sex and try to put their fingers in or too near my vagina, and I'll cry out in pain.

“As a genderqueer trans masculine AFAB [ed. note: assigned female at birth] person, having the kind of sex I want is incredibly powerful. It's a place where I feel like I truly have autonomy over my decisions and am choosing vulnerability and intimacy because I want to. Sex is a huge part of how I connect with the people closest to me, and it's an important part of how I express myself. I think my favorite part of sex and intimacy is the fact that I don't have to hide any part of myself or tone down my queerness, transness, feminism, or power to make the world more comfortable.”

— Quinn, 22, with hir current partner for a year