For my first appointment at Tavistock GIC in October 2018, I took a day off school to go. I had been waiting for 2 years for this appointment only to find out all the trains to London had been cancelled that day. I rang the GIC and told them the situation and they said if I didn’t come I would be taken off the waiting list completely, and have to start the process again. My mum managed to take the day off work at short notice and drove me to London, but if she wasn’t able to do that then I’m not sure I would be here today and comfortable in my body.
Many disabled people have issues accessing transport as it is and circumstances like that can prove incredibly frustrating and overwhelming for those of us who are neurodiverse. My experience is not uncommon, with many other trans people dealing with the overwhelming experience of navigating healthcare in the UK. I grew up in South Wales and was referred to the GIC when I was around 16 years old and I want to share my experience navigating the Welsh NHS system before there was a GIC in Wales, as both trans and disabled.
First, I want to reveal some facts about disability and transness with you. The Human Rights Council funded a study looking at the demographics of adults in the US. In that, they found that over one third of LGBTQ+ adults (36%) self-reported as being disabled, compared to 24% in the cishetero population. For trans people, this number increases to 52%. This shows how prevalent being disabled is in the trans community, and how many people within the trans community have to navigate healthcare systems that are completely inaccessible to them. Additionally, the AIDS pandemic means we have few queer elders to look up to, and that the average age for LGBTQ+ people is lower than that of the rest of the population. Given that a lot of people become disabled when they are older, for this figure to be as high as it is, is highly unusual.
There are many aspects of access to healthcare that have been made difficult by my transness and disability. I remember going to various hospital appointments and the lifts not working. This meant I had to slowly walk up several flights of stairs and made me late for my appointment, for which I was blamed.
For a long time, my debilitating migraines and reproductive issues were brushed off as being something that I would “get over” or “grow out of” as a teenager. I remember first being offered a progesterone pill to regulate my periods and stop my migraines, but what it actually did was make me bleed every 5-10 days with little respite and made my migraines worse. Despite coming off them within a few weeks of starting, this led to over a year and a half of pain, random bleeding, and migraines that didn’t settle. Eventually I got to see a gynaecologist who told me that my reproductive issues would not be treated or investigated further because ‘Oh you’ll be on testosterone in 6 months’. I ended up not starting hormones for another 3 years.
Within the GIC itself, I experienced a lot of ableism and a complete lack of tact when it comes to disabilities. Along with having physical health conditions, I am neurodiverse and found the experience of organising and travelling to GIC appointments absolutely exhausting.
I was lucky that my parents were supportive enough to take me to appointments when the trains were cancelled, and be present when needed to get me the care I so deserved. It was hard for me to organise myself and cope with the anxiety of travelling from Wales to London for appointments, plus the horrific mental toll of waiting years for appointments. I turned to alcohol as a coping mechanism which made the pain easier but didn’t solve any of the systemic issues. In the end, I went privately to start testosterone and have top surgery, which cost me around £10,000. Earning this meant working 40-50 hour weeks and struggling to cope with the effects of years of burnout and pain. I’m not going to say it was worth it, because I should never have had to deal with that amount of pain whilst at school, but it was life changing. Getting now to work as an artist and a musician in hours that work for me, looking after my disabilities in a life that is queer and fulfilling is wonderful, and every single trans person should be afforded the same feeling of love and respect.
If you’re reading this and you’ve got a friend, family member, or just know someone who is trans and disabled, try to donate to any fundraisers they have. Remember that there is a huge intersection between trans and disabled people, and that solidarity and support for both communities is important for us to move out of the survival stage and to thrive in society.