Cerebral Palsy and Companionship: No Longer Feeling Alone
Yesterday, I participated in Medicine and Me: Time for a New Approach to Adults with Cerebral Palsy, it was put on by Up – the Adult Cerebral Palsy Movement and the Royal Society of Medicine. In the event, I spoke about my experiences of having cerebral palsy from childhood to the present day. In September 2021, I wrote my first blog, ‘Cerebral Palsy’ on having the disability. This was very much a personal project. I was relieving myself of many of the negative pent-up emotions I felt around how my cerebral palsy was viewed. However, I was warmly surprised by how many people reached out to me and said that they related to my experiences. This relieved so much of the loneliness that came with my disability. A loneliness that has often felt as significant, or even more significant, than the physical difficulties presented by my disability.
Yesterday, for the first time in my life, I was surrounded by people with cerebral palsy. Before yesterday, I could count on one hand how many physically disabled people I have spent time with (I can’t count with my left hand, my left fingers struggle to go up one at a time, so that was a sort of blessing). Up are doing lots of necessary and brilliant campaigning. Cerebral palsy is caused by brain damage during pregnancy, birth, or shortly afterwards. While the brain damage caused by cerebral palsy remains unchanged, living with cerebral palsy day-to-day can take its toll on the body. Children with CP in the UK receive coordinated care. Growing up, I had a splint-fitting for my arm and leg every growth spurt, physiotherapy, Botox injections, and an operation on two fingers on my left hand. And, perhaps, more importantly, all these people spoke to each other. For example, whenever I had a Botox injection, I also had physiotherapy so that we could make the most of out of the Botox.
At my last physiotherapy review, around my eighteenth birthday, all this care just stopped. Completely stopped. My cerebral palsy did go not away but the care stopped. When I next felt pain in my left leg, I called up my GP, ‘um…I think it’s something to do with my cerebral palsy? Um, I had some Botox as a kid, maybe that would help? Maybe physiotherapy?’ Spoiler alert: I’m not a doctor, I only took Biology up to GCSE (and even then, we did not learn a thing about disability in GCSE, the only subject where disability featured was Religious Studies where we discussed people thinking they could cure disability with miracle water, so you know, not really helpful). What this means is that I have to be the coordinator of my care. It means that I have to be absolutely on top of and aware of every little issue in my body, whereas before, at my annual reviews, a physiotherapist would spot whether I’d lost some range in my movement. And then she could talk to the orthotics people about me…and they’d factor in her information into my orthotics…and they would all cooperate to help me. Rather than me trying to guess at why I have a pain in my left leg and what is the best way to fix it. Having a disability can also mean that you more readily adjust yourself to pain, because it is a part of your normal. Shortly after I had my daughter, I presumed that the pain in my left leg was just a result of my hemiplegia, and it actually was not. I had really terrible sciatica. So, it is important that people with cerebral palsy have their pain taken seriously. I’m only twenty-two, so I’m only four years out of coordinated care, but who knows what waits for me, and people like me, further down the line. 20-50% of adults with CP have deteriorating mobility with age. Up want coordinated care to be continued on into adulthood. They want cerebral palsy to be acknowledged as a life-long condition. I truly hope that they are successful in their campaigning. It will be transformative for so many.
But, back to yesterday itself. It is so crucial (and, honestly, amazing) to have people who have CP in a room together (and many more on Zoom). 130,000 adults in the UK have it. Yet, as someone who went to mainstream school, I just was not exposed to people with CP. I was extremely fortunate to meet and soon become tied to the hip with a girl with a physical disability when I was a teenager. But yesterday healed so much loneliness within me. It healed even more of the loneliness than my blogging had done.
The day was a mixture of talks from medics and those personally affected by CP (and some who were both), and although the medics brought up some very interesting information, including the higher prevalence of mental health problems in people with CP, it was the personal stories that moved me the most. Even just the room nodding when one of the speakers, Natalie, talked about being told “heel toe heel toe”. Immediate understanding rippled through the room. The validation of our shared experiences, especially when it came to how the exterior world has reacted to our CP, was therapeutic. At times, it was slightly depressing realising how much we all related to each other, even when we had large age gaps, as you’d like to think that attitudes to disability have already been changing for the better. I have blogged about my experiences of being a young mother with CP, and yesterday, I spoke about how I was very anxious about how I would be a disabled mother, because I didn’t know of any disabled parents, but there were parents with CP there. In front of me. Jean Martin’s speech, ‘I’m still here, 70 years on’ was particularly encouraging. It does help to have a view into the future. Seeing it makes it all feel possible.
The physical impact of having cerebral palsy is one thing, but the social aspect is another. In my view, there has been an almost exclusive focus on the physical, but the social is vital. Perhaps, my only regret is that I did not experience this sooner. Even as someone with what is classed as a mild version of cerebral palsy, it would have helped me tremendously to have more people to relate to. And so, to any parents of disabled kids’ reading this, I would encourage you to expose your kids to as many disabled people as possible. It’ll help you to fear their futures less too: there was such an array of careers and life-stories yesterday. Disabled kids should get to play with each other. And have disabled adults to look up to.
 Non-disabled kids could also really do with more exposure to disabled people.