39. Unfortunate Young Girl

This week I've had some things go well, and some not so well. I sorted out appointments, and bought equipment with my Disabled Student Allowance. I sorted out buying a physio hand glove using my Stroke Association grant. However, our electric wheelchair plans have been pulled up short.

The occupational therapist, Cyprian, filled in all the forms for me a while ago and had to send them off to the GP to sign. He then chased up the GP for a while until the forms were signed. I then got sent a short form to sign, and he sent it off. Since then, he has been chasing up the company  which provides the electric wheelchair. This week, Cyprian was told the application had been rejected. This was because in the short form we had filled in, he had ticked that I could self-propel (push myself with two hands). Even though he had ticked that the electric wheelchair would be needed for mobilising at university, and that I couldn't push myself outside. I'm addition, he had filled in all the preminary forms explaining my disability. We both rang and each of us explained that I couldn't self-propel, I could only scoot, and could not possibly do that outside, up and down hills. There just isn't a tick-box opinion for propelling yourself using your feet. We have appealed, and they have re-opened the case.

I also received the report from the neuro-surgeon I had seen at Queens Medical Centre. It detailed a report of his findings to my hospital consultant, the request to the hospital for an MRI and a genetics test. It was everything I had expected, but his cover letter called me an 'unfortunate young girl'. It angers me to be patronised like that. Is a disappointing stereotype of doctors. I don't really leap at the thought of being called a 'young girl' by an older man. I'm clearly not a patient from the children's hospital. And I don't really consider myself 'unfortunate', more like 'fortunate'. Fortunate to have survived, to have recovered so well. If he described me like that to well up pity and convince the hospital to fast-track me, I still don't really appreciate it.

Today, I went to an inclusive cycles event, where bicycles are adapted for disabilities. This involved a lot of tricycles and bikes which can push wheelchairs in front of them on a platform. This was aimed at people with learning difficulties, those with physical impairments, as well as those who are wheelchair-bound. It was nice to go to an event that was mainly for children and  young people. It was my first taste of events for disability, and not just rehabilitation. I went on a tricycle I could cycle with my legs as well as on one for my hands. I could mainly cling on with my left hand and foot, and was able to cycle quite successfully. Despite the seat of the leg tricycle being set back as far as it could be to suit my height, I kept banging my knees against the handle bars.

I went with Becca, the occupational therapist assistant, and made her push me ahead of her on the wheelchair-platform bike. We also rode on a together on a quadracycle, where two bikes were attached next to each other, and one of these controls the steering. Becca let me steer. For someone who can legally drive, I am terrible at checking my blind spots. Becca was good at reminding me to turn. It felt a bit like we were riding some dodgems. We both found the event very exciting and novel, and one we can definitely recommend to other residents and their families. We were both definitely too thrilled by the whole thing.

Down to ride.