Overmedicalisation is harming disabled people’s sex lives

When I was eight, I had an unnecessary hymen check. I still remember the sound of the cheap plastic curtain rings jingling as the doctor placed me on the bed and examined my vulva.

Frequent medical interventions, investigations, and consultations have been a part of my life since I was seven years old. And as a disabled person, this consistent medicalisation of my body has corrupted my sexual development.

This process, known as overmedicalisation, reduces people to being a collection of medical symptoms and problems. It can skew understandings of boundaries and consent, and prevent disabled people from being seen as sexual beings.

“The person becomes more of an object and is essentially dehumanised,” says Dr Kaley Roosen, a clinical psychologist who is also disabled. “People begin to also associate their body with the medical problems they have been assigned.”

Throughout my developing years, overmedicalisation warped my relationship with my body beyond belief. The illnesses became my entire identity and I gradually lost all sense of bodily autonomy, especially when so many of the tests I underwent were unnecessary or resulted in no further action being taken.

Medical teams would examine my naked body as if it were a diagram in a textbook and discuss my medical needs as if I wasn’t there

Medical teams would examine my naked body as if it were a diagram in a textbook and discuss my medical needs as if I wasn’t there. In time, this led to me having a misguided understanding of consent.

That’s because this dynamic can eventually make a person believe that they aren’t entitled to boundaries and comfort, says Dr Roosen. “They may struggle to communicate and understand their own sense of boundaries with another person. They may have a confused sense of their own right to consent as they were never granted this right in the past as a patient.”

According to a 2019 survey, 71% of those with a long-term disability reported feeling helpless, anxious or confused when receiving care.¹ Considering there are 14 million disabled people living in the UK, this works out to being just under 10 million people.

I didn’t understand how to set boundaries, let alone communicate when they were violated, because people had been crossing them my entire life. No one had ever told me I was allowed to say no, or to question someone else’s use of my body, so I became entangled in increasingly dangerous sexual encounters.

Understanding of consent can be further skewed by “good patient syndrome”, which is when patients acquiesce to doctors’ demands in hopes of getting better care

This is reflected in the rates of sexual violence towards disabled communities. According to US legal resource Disability Justice, an overwhelming 83% of disabled women will be sexually assaulted in their lifetime and only 3% of sexual abuses involving people with developmental disabilities are ever reported.²

Understanding of consent can be further skewed by “good patient syndrome”, which is when patients acquiesce to doctors’ demands in hopes of getting better care.

“The good patient syndrome makes disabled and chronically ill people feel as if we have to be quiet, kind, agreeable, happy, and passive in order to get basic medical care,” says Dr Roosen.

“The impact of this can be devastating psychologically. It can create difficulties with conflict, disconnection from self, suppression of emotions and emotional needs, anxiety about upsetting other people, dependency on others, and risk of being abused or taken advantage of by others.”

It felt wrong to have any interest in sex or pleasure when my body had been reduced to nothing but a set of symptoms

At some point, I became so consumed by being a chronically ill person that I felt like a sexless being. It felt wrong to have any interest in sex or pleasure when my body had been reduced to nothing but a set of symptoms and a list of prescriptions.

“It may be hard for individuals to disassociate from their disability and work out what their sexual identity is,” says sexologist Ness Cooper. While disability doesn’t change or define someone’s sexuality, overmedicalisation often sees many disabled people automatically labelled as asexual, she adds.

Not only can this have lasting effects on their sense of self, but it can reduce access to sex education and health services.

Multiple studies reveal a dearth of comprehensive sex education for disabled people, especially for those with intellectual disabilities.³ A 2016 study showed that even when intellectually disabled people demonstrate an interest in sex and romance, they are not equipped with the appropriate education to support this desire.⁴

When I started using my cane, doctors stopped asking about my sexual health during our appointments.

I didn’t realise I had a choice in the care I was given. This is something that needs to change

I didn’t realise I had a choice in the care I was given. This is something that needs to change—along with the narrow focus on symptoms rather than seeing patients as people, says Silvi Saxena, a hospice clinical trainer and educator.

“Patients are allowed choice even if you as a medical provider don’t agree with their decision…Your obligation is to your patient as a whole, not just the set of symptoms your patient is presenting to you. Their emotions, experiences, fears, and trauma are just as real as the physical issues they are showing you.”

Reckoning with the influence of overmedicalisation meant starting from scratch with my sexual development. I had to unlearn everything I thought I knew about consent before learning how to set clear and firm boundaries. Then, I began forging an identity that acknowledged chronic illness without allowing it to consume me.

To prevent further damage and to heal the wounds already inflicted on the disabled and chronically ill communities, we must be empowered to make our own medical decisions and be taught that “no” is always an acceptable answer.

We should never have our humanity—including our sexuality—reduced to a list of symptoms.
 
 
Featured image is an illustration of a vibrator arranged among a number of pills, as if hiding within their ranks
 
 
Page last updated December 2022