‘Being LGBTQ and disabled is hard, but it taught me to advocate for myself – especially in our health system’
Disability History Month is a chance for us to reflect on the way disabled people have been treated, both in distant and recent history. As an LGBTQ disabled person, I know that my intersecting identities add layers of complexity to how I’m treated by the world.
One moment that stands out to me is when I was told by a nurse that I was, apparently, abstinent. I was surprised to hear that, and even more surprised that I was, apparently, the last to know.
The nurse, filling out a form, had just asked me which contraceptive method I was using, and I joked: “Lesbianism.” She had checked the “abstinent” box. That form, which had no option for non-heterosexual sex, became something of a metaphor for my experiences as a disabled queer woman.
As far as the healthcare system was concerned, I didn’t exist. But as someone with a disability, if I wanted treatment and care, I would need to categorise myself as an “abstinent” heterosexual woman.
A year later, I encountered the same situation with a radiographer – again about contraception. When I said that I didn’t take any but couldn’t be pregnant, her response was that unless I was abstinent, I had to take a pregnancy test. I didn’t think I needed to wee on a stick to prove I was gay (I didn’t think they could test for that). It took a bit of back-and-forth for her to accept that my being a lesbian was a good enough contraceptive, but it was clear that there was no procedure in place for treating queer women dating cisgender women.
In both situations, there were clear signals that I should just humour them and “be straight” for the sake of the paperwork. And, in both situations, I was a young person navigating healthcare alone for the first time, and I felt like I had to defend my sexual orientation to those in positions of power over my care. It was isolating, and humiliating.
When we ask why queer people feel let down by healthcare, we focus on open homophobia from doctors. Although that definitely happens too often, it’s a small part of the larger issue.
Training and policies within healthcare are rarely designed with LGBTQ people in mind. They aim to treat the maximum number of patients with maximum efficiency, but they work on the presumption that all patients are homogenous. This presumption can fail LGBTQ patients, who often have unique needs, like different reproductive or sexual healthcare, and are significantly more likely to experience mental ill-health.
“Advocating for myself as a disabled lesbian often means challenging the presumption that straight is the default”
Take, for example, some NHS IVF policies, where the default is often to require couples to prove they’ve been ‘trying’ for a set amount of time, excluding cisgender lesbian couples. When systems aren’t designed for us, navigating them becomes complex, costly and exhausting. We end up being failed at our most vulnerable, and so we lose faith in healthcare.
Disabled LGBTQ people also can’t afford to remove ourselves from the system, but navigating it is a high-stakes game.
When we come up against these situations, our options are to lie about our sexuality or choose to advocate and risk becoming ‘difficult’ patients. For those of us in ongoing care, being labelled ‘difficult’ is a scarlet letter, after which your doctors and nurses see you as being combative rather than cooperative. These are relationships we rely on and can’t afford to sour.
For disabled LGBTQ people to feel comfortable, we need to be able to trust that we can be fully honest with our doctors. We need to know that they’re trained to approach us with as much sensitivity and compassion as any other patient. Until we can trust in that, LGBTQ disabled people will keep falling through the cracks and losing faith in those supposed to care for us.
The NHS could make changes to regain that trust; like implementing mandatory training so that medics feel equipped to have those conversations, and to dispel the myth that all patients are cishet until proven otherwise. They could identify who is responsible for advocating for LGBTQ inclusion in each trust. Despite what some politicians might tell you, that’s not a ‘political’ choice, but a pragmatic one.
Until that day comes, my only option is to advocate for myself, both as both a queer and disabled person. As a teenager, newly out and unused to navigating with a chronic illness, I had presumed that healthcare was a system set up to support me. Eventually I realised that it wasn’t, and that if I wanted to be taken seriously, I had to make myself heard.
Advocating for myself as a disabled lesbian often means challenging the presumption that straight is the default. It means knowing that I have the right to the same standard of healthcare as everyone else, and that there are tools available to make sure I get it, like having a medical advocate, getting a second opinion, or moving my care entirely. Doing those things isn’t ‘difficult’; it’s often brace and necessary.
Like many of us, I grew up in a school environment where it was unimaginable that LGBTQ people would even be discussed, and so a healthcare system where diversity is embedded in its culture is hard to imagine too. But this Disability History Month, I hope we can look not only back but forward, to a future where LGBTQ patients are listened to, and where their voices have power. I want to remind other LGBTQ people learning to live with a disability that you are a partner in your own care, and you deserve to have your voice heard.
Simone is an ambassador for Just Like Us, the LGBTQ young people’s charity. For more information, sign up to their newsletter.
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