Women with disabilities have sex. So why are their sexual health needs often ignored?

Jocelyn Maffin says she was never asked about her sexual health as a young woman, and as a result she was never offered contraception, information about STIs or an HPV vaccine - omissions she believes are related to the fact that she has a disability.
Jocelyn Maffin lives in Nanaimo, B.C. For decades, she said, 'Nobody ever asked me' about sexual activity or contraception during medical appointments. (Sylvia McFadden)
Listen to the full episode26:30

Jocelyn Maffin remembers the first conversation about her sexual health as one that happened around her, but not with her —  even though she was in the room with her doctor.

"The one time anything sexual health-related came up, I think I was 14 and the pediatrician looked at a fellow or a resident in the room and said, 'Now this is the point at which we usually ask about menstruation,' and that was it," the Nanaimo, B.C., woman told Dr. Brian Goldman, host of CBC's White Coat, Black Art.

Maffin, 39, was born with a spinal cord tumour, which means she is paralyzed from her belly button down.

That moment marked the "beginning and the end of any sort of discussion about sexual health for many, many more years."

"After that point I was never asked about STIs [sexually transmitted infections] or sexual activity or contraception even at ages that I know my peers were talking about it … Nobody ever asked me."

Jocelyn Maffin at the Mt. Abriel adapted mountain bike trail park outside of Nakusp, B.C., in 2018. (Elladee Brown)

Maffin believes a number of factors led to her sexual health being overlooked by her caregivers, and to some degree, herself.

She became sexually active later than her peers so "it wasn't a priority" in her life.

Meanwhile, her doctors were focused on the more pressing and complex aspects of her care. Her condition means she has chronic pain and experiences a lot of complications.

Sexual health a 'distant third or fourth' priority

"I don't fault them for that necessarily. However, we don't have a system that allows for care of a person with a complex condition, plus their average, everyday human being needs, like discussions about … sexual health," Maffin said.

"There were so many priorities that this was a distant third or fourth."

Research suggest Maffin's experience isn't unique.  A 2016 Canadian review of  gynecological care for women with developmental disabilities found they "experience poorer gynecological health-care outcomes and are less likely to receive preventative screening."

Another study by researchers at the University of Toronto concluded health-care access and support for disabled women in Canada falls short of the UN Convention of the Rights of Persons with Disabilities.

Vancouver nurse practitioner Natasha Prodan-Bhalla sees first-hand the consequences of that gap.

Jocelyn and Todd Maffin's engagement. (Sylvia McFadden)

"I think we're seeing a lot more cancer because these women aren't getting screened as often as they should be," she said, adding it's an anecdotal observation.

"It's hard to know for sure if [it] could have been completely prevented it or whether this cancer would have grown anyway, but I definitely think that we see more advanced cancer, more often than I do in other women's health clinic," she told Dr. Goldman.

'There's often a lot of tears'

Prodan-Bhalla works at the Access Clinic at BC's Women's Hospital and Health Centre. It provides gynecological care to adolescents and women with disabilities.

Prodan-Bhalla says they also treat transgender patients and those who've experienced sexual trauma.

The clinic is wheelchair-accessible with lifts that allow women to transfer to accessible beds, along with stirrups that accommodate patients with spasticity due to cerebral palsy or other conditions.

Women with disabilities and sexual health 1:15

Maffin says she feels "plain lucky" to have stumbled on to the clinic, albeit later than she would have liked. 

"They were the first people to … have the underlying knowledge of my condition and my special needs as a person with a disability in mind," she said.

Prodan-Bhalla says some patients break down crying when she asks them about their sexual health because it's the first time it's been acknowledged.

"There's often a lot of tears," she said, adding  she spends up to an hour with new patients and a half hour with regular ones.

Natasha Prodan-Bhalla works at the Access Clinic at BC Women's Hospital and Health Centre. The clinic is equipped to offer gynecological care to adolescents and women with disabilities. (Holly Tran)

Seeing people with disabilities as sexual beings

She says the health-care system — and society —  has to deal with biases it has about women with disabilities.

"[They] are often not seen in society as much as they should be. And I mean seen, as recognized that they are having sex and they are having relationships," she said.  

We're surviving into adulthood in ever greater numbers. But we are still coming over the cusp where it's OK to talk about sex and disability in the same sentence.- Jocelyn Maffin

Maffin agrees, adding that medical schools need to ensure future doctors are comfortable and prepared to treat the sexual health of disabled women.

She's happy she found the clinic, but worries about women in rural areas and those who face other barriers, adding that people with disabilities now live longer so more women need care.

"We're surviving into adulthood in ever greater numbers. But we are still coming over the cusp where it's OK to talk about sex and disability in the same sentence. I think the medical community just really wanted to help us survive. The system wasn't set up to to have a full picture of what surviving and thriving in adulthood looked like," Maffin said.

According to Statistics Canada, more than two million women aged 15 or older — nearly 15 per cent of women in Canada — reported at least one disability that limited their daily activities in 2012.

Ultimately though, Maffin says the end goal has to be equal access to care for all.

"I don't think that we've really figured out how to offer proper sexual health care to people with disabilities until it's available in their own family doctor's office."