Real Life Stories: Cerebral Palsy and Funding – A Mobility Aid Story
Posted by Mike Phipps on December 17, 2021
Emily Manock was diagnosed with cerebral palsy at the age of three. In this month’s Real Life Stories, Emily tells us about her late diagnosis and her experience with NHS wheelchairs.
I was lucky enough to meet with my oldest friend the other day (who I have not seen since March 2020), to have a much needed catch up. We both have disabilities and have known each other since childhood.
We got onto the subject of some of the younger kids we knew from disability swimming, as my friend has kept in contact with them, and we discussed how they were doing. I must admit, it made me feel very reflective about my own childhood and my younger self’s relationship with my disability.
Late Diagnosis And Late Developmental Milestones
I was diagnosed with cerebral palsy at the age of three, which, at the time, was considered quite late. I was late in most of my developmental milestones, yet doctors were reluctant to run any tests, because they did not believe that my issues with walking were concerning enough to warrant this. It took my mum complaining constantly to the doctor, and then eventually seeing a private orthopaedic surgeon, in order to finally get an MRI and a subsequent diagnosis.
Always Tired And Needing Lots Of Naps
One of the major factors leading to my mum pursuing a diagnosis was my tiredness. On holiday, I would need as many naps as someone half my age, and I appeared to almost wilt if I walked, or did too much. The solution to this was the 'buggy', and I despised it with every fibre of my being. Its colours were a lurid blue and green and it was embarrassingly huge. Even my mum, who usually put a positive spin on my medical interventions, could not hide her disgust.
I Refused To Use It!
As an indignant four-year-old who hated being treated like a “baby,” being given a chair like this felt like a personal insult. I would do anything not to use it, and my parents would oblige, because they did not want to be seen with this thing either! My dad would put me on his shoulders, or carry me, or I would simply run myself into the ground and deal with the consequences later, so I did not have to sit in that chair.
Then my brother was born, and I was afforded a golden opportunity; the 'buggy board'.
The ‘Buggy’s Board’ Ticket To Freedom
When my brother was a baby, the 'buggy board' attached to his pram and was my ticket to freedom. I used to stand on the back of my brother’s buggy and be pushed by my exhausted mother. This solution worked until my brother grew up.
As I grew, it became increasingly obvious that I would need a wheelchair. My muscles were getting tighter with every inch I got taller, but as someone who was semi-ambulant, it was a struggle to get any kind of funding. While I did qualify for a wheelchair, not needing it around the house meant I only got the most basic chair.
I had around 4 different NHS wheelchairs before I got my current one. None of them were designed for independent and dynamic use. They had high backs and squeaky wheels and I felt embarrassed by how dependent I was when I absolutely had to use it. I could not go anywhere without a lot of help. One of the chairs was not even manual, so I had to rely on someone pushing me.
Even around other disabled people, I was ashamed of how bad my wheelchair was.
I was lucky enough to be invited to the CP World Games in 2018, and despite being surrounded with people with my disability, sometimes more severe than mine, I still needed more help than a lot of my peers, because they could move more freely than I could in my wheelchair. Friends who had a fraction of the mobility I had, had to help me onto the coach because my wheelchair was so heavy.
When I Turned 18, Everything Changed For The Better
There is an odd loophole with how the NHS funds wheelchairs; universities are counted as one entity so, using my wheelchair to get between university buildings is counted as “inside use.” This practically quadrupled my funding and allowed me to get a wheelchair I can use independently.
Self-acceptance And Self-propulsion
I remember when I first tried the wheelchair I would go onto order once I got the funding. It felt odd to be moving so effortlessly across the vinyl floor of the warehouse. Never in my life had I been able to move under my own steam with relative ease. I knew how much this would change my life the moment I started to propel myself forward.
I use my little aluminium chair nearly every day – it is beautiful, and I am proud to be seen in it while I am out and about. It is a gorgeous chromatic silver colour, and the design is sleek and stylish. The back of the seat is the perfect height to support my back without impeding my movement, and the frame is so light, I can lift it with one hand.
I have felt the difference in the years since I received it. I am no longer ashamed to be using a mobility aid in public, because it is leagues apart from the clunky dark frames I used to have to drag myself around in.
My Confidence Has Never Been Better
The pandemic notwithstanding, my life has improved so much since I got this chair. I now have a wheelchair that I want to use. I use it the appropriate amount, and now I am so much more comfortable. I can go out with my friends, and I can keep up with them when we wander around. I have not had a muscle strain in months, and my pain is so much more manageable than it ever has been.
Essential Mobility Aids
There is so much stigma around a young person using a mobility aid, and only being able to access a poor-quality mobility aid only makes it worse.
Everyone who needs a mobility aid, regardless of age, should be able to access quality equipment. It is so important that people understand how essential these devices are to the people who need them.