Correction: An earlier version of this article misstated that Andrew Gurza has cystic fibrosis. Gurza has cerebral palsy.
Rachel Gross was being prepped for surgery four years ago when the nurse mentioned the routine pregnancy test, only to immediately waive it, she said.
“Usually we require a pregnancy test, but you don’t have to do that,” the nurse said, according to Gross.
Gross, now 25, was all too familiar with that kind of reaction: She has a form of muscular dystrophy called nemaline rod myopathy and presents as having a visible disability. She uses a wheelchair and has a tracheostomy tube.
“The nurse just assumed I was not sexually active because I’m disabled, when in fact I was” sexually active, Gross said. “It’s a common occurrence. Lots of medical professionals just don’t know how to handle disabled people.”
Before the copywriter and digital content creator could say anything, the doctor stepped in and asked the nurse why Gross wasn’t taking a pregnancy test, and if she had asked if the patient was sexually active. The nurse replied no, Gross recalled, and said that she “didn’t want to make me do any unnecessary steps.”
Gross was at the appointment to get a polyp removed from her ovary, she said, but also to get birth control.
For people with disabilities, the assumption that they are not sexually active is not uncommon, experts say — and it can be dangerous. The conversation about these misconceptions has seen a resurgence after a tweet went viral last month. According to the woman’s tweet, a nurse asked if she was sexually active and then replied, “I’m guessing no huh? Considering…,” referring to her disability. (The original tweeter did not respond to multiple requests for comment.) The tweet received dozens of replies, with others saying they could relate.
“Women with disabilities are poorly treated by the majority of the entire health-care system, from access to check-in to medical assistant to nurse to provider,” said Diane Harper, a doctor and professor at the University of Michigan Medical School who treats women with disabilities.
These assumptions about women not being sexually active can result in less preventive care, including screenings and exams, with serious health consequences, Harper said. As she points out, most women with disabilities are sexually active and at risk for HPV infection. HPV can cause cervical, anal, and head and neck cancers.
Women with physical disabilities have as much sexual desire as women in general, according to a 2001 study conducted by researchers at the Baylor College of Medicine. About 94 percent of women with disabilities had experienced sexual activity with a partner in their lifetime, and 49 percent were sexually active at the time of the study, compared with 61 percent of women without disabilities.
According to Lisa M. Meeks, an expert in disabilities in medical education and host of the “Docs With Disabilities” podcast, ableism and misconceptions can lead to “death for women with disabilities when normative screening is not done with the assumption that ‘they don’t need it’ because they are not viewed as sexual.”
For people with disabilities, Meeks said, the standards of care for sexual and reproductive health are sometimes “not followed,” leading to these potentially dire circumstances.
People with less visible disabilities or who are chronically ill can also experience prejudice.
“While it’s not a solution to these assumptions, recognizing that being disabled is a spectrum that doesn’t look any specific way might help people realize that disabled people are not a monolith and you can’t generalize how an entire group of people will feel about sex,” said sex and relationship coach Rachael Rose, who is also an educator about disability.
To move the conversation forward, Harper said that people need to get past incorrect assumptions and ask all questions, likening it to “learning about how to ask sexual preferences and activities in an LGBTQ population,” she said. “It takes a role model, a communication strategy and lots of effort to make the change — with accountability for change.”
Andrew Gurza, a consultant and host of the podcast “Disability After Dark,” which discusses disability and sexuality, also encourages frank conversation — without being any more intrusive than you would be with a non-disabled person.
Gurza recommends starting a conversation like this, for example: “I want to learn more about sex and disabilities, I have questions.” It’s important to “give the agency to the disabled person,” they added. “Don’t say, ‘How do you have sex?’ ”
Gurza, who has cerebral palsy, points out that sex and disability are both universal experiences. “If we are lucky, all of us will live long enough to have some sort of disability. When you become disabled, aren’t you still going to want to have great sex?” they said. “Aren’t you going to want to have bodily pleasure?”
In addition to hosting the podcast, Gurza co-founded a line of sex toys for disabled people, Bump’n, which hopes to launch a line of aides that don’t require hands — think a cross between a “foam roller and body pillow” — for people who lack the fine motor skills to press buttons on or manipulate a traditional vibrator.
Gurza, who is nonbinary, also noted the gendered aspect through which disability is often seen. “Johnny had a spinal cord injury and how does he have sex?” is the White, cisgender male narrative that tends to dominate pop culture, they said. “We should talk about people who were born disabled or who have disabilities we can’t see. It’s time to start changing the conversation.”
Reflecting on her experience, Gross was grateful the doctor jumped in when he did. Still, she said, she’s used to having to speak up for herself in medical settings.
“People, especially medical professionals, need to do better and realize that disabled people are just like everyone else,” she said. “We are not a rare spectacle and we should be treated just as a non-disabled person should be treated. … We are sexual beings and our sexual health should not be ignored.”