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Our Lived Experiences

Oliver (he/him)

What I have learnt through my experiences as a disabled trans person is to work out what I need to say before going to medical appointments. I try to plan and write down things in advance, this helps my anxiety and means that I do not forget what I needed to say, and important things are not missed.

I’m a 31-year-old non-binary trans man. I am autistic, schizoaffective, have Tourette’s, and multiple other neurodivergent conditions. I also have chronic pain and chronic illnesses. I am a manual wheelchair user, and an AAC (Augmentative and Alternative Communication) user. In my spare time, I enjoy history and going to the theatre.

Oliver sitting in his wheelchair on a wooden seaside promenade

I was admitted to a private psychiatric hospital as an NHS patient, in a psychotic episode. As a wheelchair user, the bathroom in my room was not accessible, and therefore I was unable to shower for 6 weeks. The fact that I was unable to shower due to being a wheelchair user, made me feel forgotten and not even thought about. The ward staff referred me to the hospital occupational therapist (OT) and physiotherapist. With the support of the OT and physio, we were able to make the bathroom accessible, so that I was able to shower eventually with the support of one of the ward support workers. The fact that I was able to have a shower helped me somewhat as I was able to be clean and not smell, this helped with my mental health.

I use a manual wheelchair due to Tourette’s Syndrome, and I am often met with disbelief when I tell people why I use a wheelchair. When I registered at my current GP practice, I was very anxious about how the staff would react to my being a wheelchair user, however the staff have been great. I was not met with shock or disbelief, just staff who instead listened to me. This has helped to reduce my anxiety when going to see my GP, and therefore I am much more likely to visit the GP when needed.

As an AAC user, I have had many experiences where healthcare professionals ignore me or refuse to engage with me. To help with this I carry ‘Stickman Communication’ cards with me, which I can show to professionals and explain quickly that I use AAC. This has reduced the amount of professionals who refuse to engage with me.

When I was first referred for top surgery, I saw my surgeon and received a date for surgery.  However, a few months before my surgery date, I was sectioned under the mental health act, and was in a psychiatric hospital for several months, including when my surgery date was due. My surgery was cancelled due to me being sectioned. I was obviously very upset and distressed about this. When discharged from hospital, I worked with my community psychiatrist and community mental health team to prove to the gender clinic and surgeon that top surgery would be a positive thing for my mental health. A few years after it was cancelled, I was able to have top surgery.

What I have learnt through my experiences as a disabled trans person is to work out what I need to say before going to medical appointments. I try to plan and write down things in advance, this helps my anxiety and means that I do not forget what I needed to say, and important things are not missed. It also means that, if written down on paper, I can give the healthcare professional a copy of the list straight away, which means it can be put in my notes and saved.