Kym Oliver, 33, from south London has had her fair share of bad sexual health appointments. There was the time, aged 20, when her legs were hoisted into stirrups and the nurse left the room – with no explanation – before returning with a male consultant and five junior doctors. Without greeting Oliver, they started discussing the tilted position of her cervix.
“I felt like a curiosity in a museum,” she says. Although she left that checkup with a “bad taste in her mouth”, she had at least been able to access the service. It was only when she suddenly developed multiple sclerosis five years later, and became a full-time wheelchair user, that she saw how inaccessible sexual health services in the UK are for disabled people.
Oliver starting developing symptoms of MS – a lifetime condition that affects the brain and spinal cord causing problems with movement, balance and sensation – within a month. “It all happened very quickly,” she says. She went from being healthy and ambulant to being unable to stand on her own. She started noticing that everyday things like no ramp access to a building or broken lifts stopped her getting to where she needed to be. But she also noticed a problem with sexual health services: there was an assumption that she no longer required them because her body was medical, not sexual.
“Disabled people are out here having sex, let’s make that clear,” she says. “But even when people accept that, there is still a presumption we only sleep with other disabled people, so it doesn’t matter if we’re having safe sex or not – we can just bang each other into oblivion without checkups.”
Society’s view is that disabled people don’t, won’t and can’t have sex.
Funding for sexual health services in England and Wales has been cut drastically in the past five years: a reported £64m less is being spent on services, equivalent to a 10% budget cut, according to the British Association for Sexual Health and HIV. A restructuring in 2013 has also seen responsibility for sexual health fall to local councils rather than NHS England – meaning demands for cash compete with speed bumps and bin collections.
These cuts pose problems for all users (and STI rates, which Public Health England says have grown 5% in the past 12 months alone). But there are additional issues faced by the 13.9 million disabled people in the UK.
Some are logistical: lack of ramps, broken lifts, parking, staircases and long distances to travel to your local centre, especially as more close down. Oliver has no centres near her London home so she has to travel, with the assistance of a carer, for an hour on public transport. This takes crucial time out of her caring allowance for the week and, if there are long waits at the clinic, that further eats into her time. When she rings ahead to check lifts and ramp access, the phone number redirects to a central hub (another cost-cutting measure).
These physical barriers exist across society for disabled people, but a secondary obstacle is the misconception about disability and sex. Oliver says: “People will say to me: ‘Are you sure this is where you want to be? The hospital is up the road.’ They wonder what I could be doing there.”
After her diagnosis, but before she used a wheelchair, Oliver was on crutches. During that transition she was still acknowledged as a sexual being – but not now. “The minute you sit in a [wheel]chair all of that changes – you don’t need love or affection anymore, you sit on your vagina so it can’t be functioning,” she jokes.
Emily Yates, 27, from Glasgow, has cerebral palsy and has used a wheelchair full-time since an operation aged nine, which failed to correct her walking. She has had fewer problems with wheelchair accessibility at sexual health clinics – although admits, “it is a postcode lottery” in which she’s been lucky – but frequently encounters similar attitudes about her sex life as Oliver. “Society’s view is that disabled people don’t, won’t and can’t have sex,” she says.
There are no official statistics on how many disabled people are missing out on sexual health services, but they are three times more likely to report being denied healthcare than the general population according to the latest statistics from the World Health Organisation.
Dr Naomi Sutton, who works at a sexual health clinic in Rotherham, says she can believe this, from a doctor’s perspective: “In my time as a doctor in sexual health, I have seen very few physically disabled people and I have to question why. Our clinic has wheelchair access and we could definitely accommodate a person with a physical disability. Is it that physically disabled people are not seen as a sexually active group of people so do not get the right sex education and are missing out on looking after their sexual health?”
Oliver says society as a whole infantilises disabled people and sees them as sexless – to clothe, feed and shelter, and nothing more. This perception starts early: a 2019 study by the sexual health and wellbeing charity Brook found young people with disabilities are regularly denied sex education at school because 80% of teachers are unable to find appropriate resources or relatable images for their disabled students. This is despite educators gearing up provisions for the implementation of mandatory sex education from 2020.
A spokesperson from Brook said: “The reality is that physical barriers and societal taboos around sex and disability are limiting some young people’s access to essential services and information.”
For Oliver, being able-bodied for two decades before developing MS means she can directly compare the experiences and she says questions around her sexual activity are now brushed over. “They assume the questions don’t apply to you – it’s like they’ve already ticked ‘no’ on the form before you answer.” She is no longer offered condoms at the end of a sexual health appointment, she adds.
This isn’t just a problem for those in wheelchairs. Claire Holland, 38, from Luton is profoundly deaf and wears a cochlear implant. She goes to the sexual health clinic with her husband James, who isn’t deaf. She says she always explains she needs to lipread when in the clinic but is regularly ignored. “It is really frustrating and makes me anxious because I don’t know what they’re doing.”
Yates has encountered similar, with medical professionals talking over her – or not directly to her. “A medical professional once, brilliantly and correctly, directed all of her questions about my body and autonomy to me rather than my partner, who was also in the room. I remember being so impressed by this as it was a change from the norm,” she says.
Senior sexual health nurse Sarah Mulindwa, who works at London’s Dean Street clinic, doesn’t understand why those with disabilities continue to be overlooked. “I can list a number of targeted groups who have specific clinics and services catering to their needs, yet I’ve never heard of a sexual heath service specifically targeting people with disabilities who may not be able to access services or who may need extra assistance when having check-ups.”
Holland says the notion that disabled people are somehow ‘sexless’ stems from wider taboos about disability. Not only are they more likely to have a bad experience, but those experiences ostracise them further. “Deaf and disabled women need screening as much as anyone else,” says Holland. “If they have a bad experience because of communication needs or attitude they are less likely to attend in the future.” As Yates says: “This is hugely dangerous.”
There’s no excuse for not educating yourself around the correct things to say and do.
Oliver agrees: “These are essential health services that allow people autonomy and safeguard them from disease, and sometimes fatality or infertility. They sometimes catch things early like cervical or prostate cancer. By not allowing this group of people, you’re saying you deserve to have undiagnosed cervical cancer, HPV, syphillis, gonorrhoea. And they can pass it on, too.”
It also denies disabled people a fulfilling sex life and perpetuates rigid societal norms about sex, says Mulindwa, adding: “Sex is to be enjoyed by everybody.”
Dr Paula Baraitser, a sexual health consultant and clinical director at the free online sexual health service SH:24, says: “People living with disabilities have sexual thoughts, feelings and activities like everyone else, but experience barriers in accessing information and services. Societal barriers, particularly assumptions that people living with disabilities do not need sexual and reproductive health services, are the most damaging.”
Awareness-raising and education is the answer, say all those we spoke to. “There is an understandable fear factor that surrounds disability for many people who have little to no experience of it, but there’s no excuse for not educating yourself around the correct things to say and do,” says Yates.
Sexual health staff should be trained to communicate effectively with disabled people about their needs, agrees Holland, who also wants there to be campaigning around the issue to bring it up the healthcare agenda. Both women believe healthcare providers could be working more collaboratively. “If surgeries worked together they could share resources or organise for a disabled person to attend a different clinic,” says Holland. “At the moment this often isn’t happening.”
Most of all, says Oliver, those with disabilities should be empowered to demand more for their own sex lives. “It should be about pleasure, not just necessity. The way I saw myself when I became disabled was, I can’t do A,B,C anymore so I’m not sexual – but that’s just not the case.”
Sexual Health Week 2019 is taking place between 16-22 September and this year’s theme is sex and disability. SH:24 and Fettle have committed to making sexual health services more accessible.