Why Are We So Damn Afraid of the Word ‘Sex’ When Talking about Disability?

There is perhaps no single word that triggers more rapid retreat or polite avoidance in academic, medical, and caregiving circles than “sex.” When I began my journey as a critical disability studies scholar focusing on disability and sexuality, I naively assumed that people would welcome long-overdue conversations about the often-ignored (or outright denied) sexual lives of disabled people. Instead, I encountered raised eyebrows, tightened lips, and anxious requests to “tone it down,” to pick a more comfortable term, or to frame my work in such a way that no one feels uneasy. But what, exactly, is everyone so afraid of?

The Tension Around Naming

From the start, I was repeatedly told: “Don’t use the word ‘sex’ or ‘sexuality’ in your proposals. It makes people uncomfortable.” The first few times, I genuinely wondered if I was doing something wrong—maybe I was being too direct, too brash, too rebellious. I had come from a background where honest conversations about sexuality were encouraged, so it was jarring to find myself in academic spaces where direct language was scorned. Some colleagues have advised me to pivot: “Use ‘sexual health’ instead,” or, “Frame it as ‘romantic relationships’ and well-being.” But for me, and for so many disabled people, substituting euphemisms felt like betraying an important aspect of lived experience.

When we skirt around the word “sexuality,” we risk perpetuating the idea that sex is inherently shameful or dangerous. And if sex is portrayed as shameful or dangerous for the general population, you can imagine how that message is amplified for those with disabilities, whose bodies are often already pathologized or de-sexualized. So, while such re-labelling often comes from a place of concern—an attempt to make the topic more palatable for parents, funders, or broader society—it ends up reinforcing the idea that sexuality is a taboo we must tiptoe around. For disability communities, that taboo can be especially harmful.

The Real-World Implications of Avoidance

The discomfort around sex and sexuality isn’t just an academic quirk; it has real consequences. Avoiding direct discussions around sexuality shapes policy decisions, funding allocations, educational programs, and ultimately, the services and supports disabled people receive. If conversations about sexuality are too uncomfortable for a grant reviewer, for instance, crucial research might go unfunded. If “sexuality” never appears in the language of a study about disabled people’s well-being, participants may be robbed of the opportunity to share and process intimate realities of their lives.

When parents or caregivers of disabled individuals are encouraged to shy away from the term “sexuality,” that reluctance can translate into a complete absence of sexual education or guidance for disabled youth. Many disabled adults have testified to being treated as eternal children, whose sexual lives are either nonexistent or unthinkable to those around them. Without explicit, inclusive conversations that acknowledge their desires, bodies, and potential experiences of pleasure, disabled people may be left to navigate crucial aspects of adulthood without the resources or community support they need.

In effect, brushing off the word “sexuality” for fear of making people uncomfortable contributes to a much bigger problem: the persistent, systemic de-sexualization of disabled people. If the rest of the world resists imagining disabled people as sexual beings, that disconnect impacts relationships, personal identity, and even safety. For instance, ignoring sexuality makes it harder to provide necessary protection and awareness around sexual abuse, or to build sexual autonomy and self-advocacy skills.

Reclaiming the Space for Honest Dialogue

Last year I published a piece titled “A Crip Sociology of Fucking.” The title alone was enough to prompt some mixed feedback. “This is too direct,” a colleague warned. “You’ll alienate potential allies.” “Yet, that was precisely the reason I chose the language: to unsettle the status quo and call out the unspoken. It was an attempt to carve out space for unapologetic talk about sex, desire, bodies, and disabled experiences.

The goal was never to shock or offend. Rather, it was to question the normative assumptions that smother disabled people’s sexuality. Calling the paper “A Crip Sociology of Sexual Health” might have appeased certain audiences, but it would have glossed over the visceral realities that words like “sex,” “fucking,” and “crip” bring into focus. The interplay of power, taboo, and stigma around disability and sex deserves an equally unflinching approach. If the language startled people, perhaps it forced them to confront their own discomfort and to ask: Why do I feel this way about these words?

The “Euphemism Shuffle” and Why It Hurts

Society has long used euphemisms to talk about sex. We call it “the birds and the bees,” “sleeping together,” or “intimacy.” Sometimes, we do this with the intention of keeping conversations “polite.” In disability contexts, a common pivot is to describe research or education about “sexual health,” thinking this is more academically respectable. Yet, I’ve discovered that even “sexual health” can be met with pursed lips. Some caregivers or institutional gatekeepers want sex-related topics removed altogether: “Can’t we just call it relationship building?” or “Maybe skip this module for now.”

While there is absolutely a place for conversations about “sexual health” (it’s a vital aspect of everyone’s well-being), restricting dialogue to that medicalized term can obscure the broad spectrum of experiences, desires, and identities that constitute sexuality. Sexual health is important, but it can’t (at least at this point in time) capture the nuances of attraction, pleasure, orientation, or complex emotional landscapes that come with sexual agency. When I’m told to tone down my research, it usually amounts to missing the bigger story: disabled people are not just potential STI patients or reproductive bodies; they are people whose sexual selves are meaningful, pleasurable, complicated, and deserving of open conversation.

Language, Power, and Liberation

Words are powerful. They shape how we see ourselves, how others see us, and the types of research, services, and policies that are considered important. When “sexuality” is deliberately sanitized or stripped out of academic or clinical conversation, we lose critical opportunities for growth and understanding. We lose the chance to acknowledge that sex and desire can look different in disabled bodies—and that’s okay. We lose the chance to create accessible sexual education materials, which are often neglected due to perceived “lack of need.” We lose the chance to talk about the joys, challenges, or complexities of having a disability and still wanting, having, or enjoying sex.

In calling for a more open use of the word “sexuality,” I’m not ignoring people’s discomfort. Instead, I’m highlighting that discomfort as a symptom of a larger societal hang-up: the entrenched fear that discussing sex openly is immoral, harmful, or solely “adult content” unfit for mainstream dialogue. But that fear has siloed and stunted the disability community for far too long. No one is suggesting we bombard unsuspecting audiences with explicit details they haven’t asked for. Rather, we should create welcoming spaces—whether in academic journals, funding proposals, or caregiver workshops—where sexuality is not automatically set aside as taboo or unworthy of serious attention.

Embracing Courage in Language

Yes, it might feel uncomfortable at first. Yes, we might risk criticism or even funding losses in some scenarios. But if we truly believe in the importance of sexual autonomy, dignity, and expression for disabled people, we must be willing to speak plainly and directly. Saying “sex” doesn’t instantly render our work unprofessional, nor does it discount the seriousness of research. It simply acknowledges the reality that sexuality—this messy, multifaceted aspect of human life—is something that affects disabled and non-disabled people alike.

By sidestepping or renaming it to something more “palatable,” we’re effectively telling the world that disability and sexuality aren’t compatible topics, or that one must be domesticated before it’s safe for polite company. This does a grave disservice to the communities we aim to serve.

Why We Need to Keep Pushing

So why are we so afraid of the word “sexuality”? Perhaps because it shines a light on parts of ourselves we’ve been taught to hide or manage. It reminds us that desire, pleasure, and embodiment can’t be wholly contained by institutional language or polite euphemisms. For people already facing significant marginalization—like many disabled people—acknowledging sexuality can feel doubly transgressive.

But this transgression is liberating. Embracing it doesn’t have to mean ignoring nuances or upending personal boundaries. It’s simply recognizing that sexuality is a legitimate area of concern, research, and personal fulfillment for disabled people—and that we do ourselves no favors by pretending otherwise.

Moving Forward

My journey as a disability studies scholar has shown me both the pitfalls of academic respectability and the power of refusing to be silenced. With each grant application that dares to include the word “sexuality,” each workshop that keeps the focus on sex rather than sliding it under “well-being,” I see the possibility for real change. We have to keep questioning policies that require us to minimize or rename sexual content. We need to keep confronting the paternalism in caregiver advice that says “avoid that word, it’ll scare people.” We need to keep advocating for disabled people’s sexual rights as fundamental human rights.

At the end of the day, our collective discomfort is a fleeting feeling compared to the profound alienation that arises from a lifetime of silence. The word “sexuality” isn’t scary; it’s essential. It holds within it the capacity to recognize the fullness of each human being—disabled or not—and the potential for intimacy, desire, and pleasure that shapes so much of our identities. If we keep dancing around that little word, we risk leaving a vital dimension of human experience in the shadows, where shame and stigma thrive.

Let’s choose, instead, to bring it into the light.