Rachel's rock-climbing accident left them paralysed. She hasn't had an orgasm since.

For Rachel Zoeller (she/they), using a strap-on harness and dildo for pleasure during sex hasn’t always been necessary, or even desired. But that changed in October 2019 when Rachel acquired a severe spinal cord injury, leading Zoeller and their partner Alison to start navigating sex in a whole new way.

“I had a rock-climbing accident”, Zoeller says “I fell 60 feet from the top of the anchors to the dirt.”

Zoeller is now, primarily, a wheelchair user. And she hasn’t had an orgasm since the accident.

“I do get some pleasure around my clitoris,” Zoeller says. “But it's there for a second, and then it's either hypersensitive or it gets totally desensitised.”

Zoeller and Alison are sex positive people and Zoeller’s lack of orgasm hasn’t been for lack of trying. Instead, it’s the healthcare system that has let them down, as Zoeller has received no information from healthcare professionals about how to experience sex and pleasure in her new body.

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A 2015 study published in the American Journal of Occupational Therapy by Heather A. Fritz, Heather Dillaway and Cathy L. Lysack found that the majority of women are dissatisfied with the sex education they receive post spinal cord injury.

The study also found that most of the information offered to women is solely focused on reproduction.

Zoeller, who identifies as non-binary, says that the focus on hetero-normative ideals, such as reproduction and the nuclear family, brings up “all sorts of other trauma triggers and a lot of gender issues”.

“In hospital, people were like, 'Well, you can still get pregnant'. And I was like, that's cool and all, but I never planned to do that, so you can, like, f**k off with this conversation.”

She’s frustrated that gender, sexuality and pleasure are not a “part of the mainstream comprehensive care for a traumatic accident like this”.

This realisation didn’t come as a surprise to Zoeller, who lives in Colorado in the US. She says, “This country is totally sexually disconnected”.

“Nobody even checks in with my pronouns.” 

Rachel Zoeller and their partner, Alison. Image: Supplied.

Ligia Andrade Zúñiga (she/her/ella), a 41-year-old Latinx woman of colour with quadriplegia, says that her post injury “sex education was like zero”.

Andrade Zúñiga’s sex education consisted of an unsolicited conversation about reproduction. And like Zoeller, Andrade Zúñiga had no interest in having children.

“I was like, I'm not having any more babies. I mean, people can if they want, but I had two kids already.”

Andrade Zúñiga says the point of sex is pleasure – and that was never discussed: “The whole reason people do it is because it feels good [and] we never talked about that at all.”

Published in the 2020 research article titled 'The Journey of Sexuality After Spinal Cord Injury' found sexual wellbeing to be a necessary part of the lives of people with disabilities. Yet they say there are “systematic barriers within the healthcare system”, such as stigma, that prevent people with spinal cord injuries from receiving adequate sex education.

According to the study's authors, there is a cultural assumption that “individuals with disabilities are asexual or non-sexual beings”, and this assumption is preventing people with spinal cord injuries from receiving the sex education that they want and need.  

Andrade Zúñiga says that there is even less information available for the “quad community”, than there is for people with paraplegia.

“There's a lot more visibility in the paraplegic community. And they usually don't have to deal with caregivers and finding enough care. I think that with people who are quadriplegic, the health disparities are a lot larger than they are in the paraplegic community.”

When asked about the first-time having sex after her injury Andrade Zúñiga says, “it was disappointing”.

“I think because my mind had not completely transitioned from being able-bodied into having a disability. It also brought me back to the loss.” In essence, sex reminded her of what her body could no longer do. 

Thirteen years later, Andrade Zúñiga is “very proud of being disabled”. 

“It's very scary and the cycle of grief and loss is very apparent,” she says. “I didn't have the empowerment that I have now and I was thinking in an able-bodied way. My mind hadn’t caught up.”

It was only when she started to research and ask other people with disabilities about how to experience sex and pleasure that she began to regain her confidence and enjoy sex once more.

“I started to ask my friends questions and research it [myself],” Andrade Zúñiga says “and then I ended up having a partner that was also disabled, and so we were able to explore together. It wasn’t until then that I started to really accept my disability and I was able to really fully understand what it meant to let go of able-bodied thinking.”

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Melina Longoni (she/her), an Argentinian rehab doctor who works for the Unit of Neurorehabilitation in Spain, says she saw a lack of sex education resources for people with spinal cord injuries during her residency in 2008.

“There was nothing,” Longoni says.

She knew that needed to change.

Longoni undertook a research project and found that 60-70 per cent of spinal cord injury patients had received no information from healthcare professionals about sex and pleasure. And the patients who had received information were mostly male.

Longoni says most women “want to have sex again”.

“A lot of people are not prepared to talk to women about [sex],” she says.  

Longoni wants women with spinal cord injuries to know that it’s still possible to orgasm: “There is a lot of myth that they can’t orgasm but a lot of [people with female anatomy] can, and actually, if you had multiple orgasms pre injury, you can have multiple orgasms after.”

Longoni and other healthcare professionals developed a program called Sexabilidad (Sexability). This program teaches people with spinal cord injuries how to connect with their bodies so that they can discover new ways to experience pleasure. Longoni says, “We teach people about the other erogenous zones. We teach them how to feel orgasms in the parts [of their body] where they have feeling.”

“A lot of people with spinal cord injuries feel their orgasms above their spinal cord injury level and will even say they feel their orgasms behind their ears or in their mouth.

“They kind of feel everything. The thing they don’t always feel is the orgasm in the genitalia,” she says.

For Rachel Zoeller and their partner, Alison, sex has never had to be outcome oriented, nor has it had to be about penetration and genitalia.  

“It's just great sex, but differently oriented," says Zoeller. "That's the beauty of a queer relationship – the sex looks like whatever it wants to look like that day.”

Rachel Zoeller and their partner, Alison. Image: Supplied.

For Ligia Andrade Zúñiga, sex and pleasure is about energy.

“It's going to sound weird to people that don't have this experience”, Andrade Zúñiga says “but in every part of your body, there's energy and by isolating each part [of your body], you can start to focus the energy in certain places”.

 “We were taught only a certain type of sexuality and we're not creative enough to explore beyond the hetero-normative, able-bodied experience.

“Orgasm doesn't come from your genitals, really. It doesn't have to always be penis [in] vagina sex. It's beyond that.”

Exploring sex and pleasure in new ways helps Andrade Zúñiga to see her sexuality as something radical – something that confronts the dominant culture’s perception of people with disabilities.  

“People with disabilities are always looked at as pathetic”, she says “[and] when we take back our power with our sexuality, and desirability, we validate our sexual existence.

“I think that’s very radical.

“[Our sexuality is] very much part of our resistance and it flips the script on what society thinks that we are,” she says.

Sammy-Jo Hand (she/her/they) is an Australian writer, and gender and sexuality nerd who lives in the US. She had a crush on Tony Danza as a child in the early ‘90s and doesn’t know how she feels about that now. You can follow her on the Instaweb @sammyjojojojojojojojo

Feature Image: Supplied.