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Jacqueline has Ehlers-Danlos Syndrome (EDS), an incurable and frequently painful condition that causes joints to be overly flexible and prone to dislocation.
EDS is genetic, and Jacqueline knows that her son could have inherited it. But she’s not worried about it because she knows how to help him manage the condition.
“There are people I know who, it barely affects them … And then there are people like me who are relying on mobility aids daily,” Jacqueline says.
“I think, if at least, if he has this genetic disability, I am going to be able to support him because I’ve been through it myself.”
Like most people with EDS, Jacqueline was diagnosed in adulthood after years of living with chronic pain and injury.
She says she will be aware if her son shows signs of the condition and will be able to advocate for him where her own parents couldn’t.
“I’m really excited to be a parent and to kind of help navigate the world with a little person” – Jacqueline Tedmanson.
Compass / Johanis Lyons-Reid
Comedian Madeleine Stewart explores these stories of disability, love, sex and parenting with Compass ABC TV . She talks to the disabled community across Australia to find out what the big deal is with disabled sex.
“I think we need to remind people that … disabled folk … not only can we fall in love and have sex, but we can also have children,” Madeleine says.
When Debra Keenahan found out she was pregnant, she was hoping the baby would share her disability.
Debra has achondroplasia, also known as Dwarfism.
Dwarfism is a genetic condition that occurs in about 1 in 40,000 children, and most are born to average height parents.
Having Dwarfism herself and knowing that the father was of average height, Debra knew it was likely her child would also have achondroplasia.
“I just had it in my head it would be easier to parent a child that was my own gender … And it would be easier to, if the child was short-statured,” Debra says.
“Of course, if she’d have been a boy, I would have been perfectly happy. [But] in my family, all my nephews are massive.
“And I thought, could you imagine me, a single parent, four-foot-one, trying to parent an obnoxious six-foot teenager?”
Debra Keenahan (right) met her husband, Robert Brindley, at a photo shoot in 2014.
Compass / Morgan Timms
Debra felt relieved when she found that her daughter, Sarah, had achondroplasia too.
Raising the child as a single parent had its challenges, but Debra never felt she was less equipped to handle it because of her disability.
She recalls some criticism from others when she would let Sarah struggle with navigating climbing furniture because she knew it was something her daughter would have to learn to do.
Jacqueline hasn’t been criticised for her choice to have a child, but when people see her with her son while using a walker, they make assumptions about their relationship.
“Often Jackson will be carrying [the baby] if I’m using a walker, and I do sometimes feel like I am assumed to not be the parent, I’m just kind of with him and his son, maybe not even in a romantic way.”
The systemic barriers no-one wants to talk about
People with disabilities make up about 17 percent of the New Zealand population.
Despite the numbers, having safe sex or raising a family are more difficult for people with disabilities than for the able-bodied and neurotypical population.
People with disabilities are often victims of sexual assault and domestic violence, and on occasion, forced sterilisation is used to prevent childbirth.
For some people with disabilities, their only option for intimate contact is to engage sex workers, but it’s an expensive option, used by few.
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Kyle Montgomery found the sudden lack of intimacy was one of the hardest parts of living with an acquired disability.
Seven years ago, Kyle’s neck was broken in a wrestling match with a friend, and it left him paralysed below the chest.
Kyle has had to get used to most of his contact coming from support workers and learn to navigate his own body again.
“That is definitely a weird area when it comes to support workers, because you’re very close and intimate with people,” Kyle says.
“I am naked all the time in the mornings, obviously. So, things like massage and stretching, I’m nude.
“They’re helping me go to the toilet, showering me, washing my body, things like that … So there is a lot of intimate touch.
“I don’t think it’s very uncommon for people who have support workers and maybe not dating, and they’re alone to feel an attraction to their support worker.”
This is what sex therapist Patrick Rory-John calls “calcification” of sexuality.
“What can happen with people with disability is through the calcification of sexuality and its repression … it becomes an impulse because it’s a need that’s not being met,” Patrick said.
“When a person with disability is experiencing touch during basic hygiene and care, they can misconstrue that touch as being sensual or sexual, and what is a desire becomes a compulsion.”
Rediscovering intimacy after an acquired disability
A lack of intimacy inspired Kyle to start dating again, but he was nervous about how the first experience would work, so his friend encouraged him to start with sex workers.
“Erections started happening, and I was like, ‘Oh, it still works. Cool,” Kyle says.
“I didn’t really feel like I had the confidence to go dating and have a sex life because I don’t obviously know about my body.
“I really didn’t want to navigate those conversations with someone that’s inexperienced and could be very insensitive, where I thought, this is a professional job.”
He spent a year in hospital, coming off a ventilator and getting the use of his arms back, but Kyle says discussions of having a sex life afterwards were very clinical.
“I ended up speaking to a lot of doctors about it, but they just told me about drugs and devices that I could use.
“It wasn’t just about sex, which it should have been, and sexual health … It was so clinical.”
Kyle is now in a monogamous relationship, and they are considering going permanent and starting a family.
Kyle is concerned about trying for children because his disability means they will likely need to use IVF, which is not only expensive but also another clinical experience.
From accessible sex toys to intimate touch, comedian and disability advocate Madeleine Stewart demystifies disability and desire.
Disabled, intimate and starting families — the stories we don’t tell
Madeleine felt it was important to tell these stories of parenting after the NDIS change of legislation prevented access to sex workers and sexual aids.
“People with disability should be given room and support to explore their sexuality. It can be a really positive experience,” Madeleine says.
“And we can also be amazing partners and parents as well.”
Jacqueline is looking forward to raising a child and helping him learn about the world.
“I’m really excited to be a parent and to kind of help navigate the world with a little person,” she says.
“I do think, being queer and disabled, I kind of have a lot of understanding of how tough the world can be, but also how nice it can be with community and with people who really love and support you.”
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