Hi. My name is Toby Morrison, I’m 25 years old. I want to talk to you about my experience of having cerebral palsy.
I’m currently the Assistant Manager of the Crouch End shop at the London Centre for Children with Cerebral Palsy in North London. My connection to the charity goes much further back than just volunteering (as I did in the Muswell Hill shop for a year), or working here.
Cerebral palsy and me
Just before I was born, I experienced a haemorrhagic stroke, causing me to develop Hydrocephalus (water on the brain). Due to the subsequent brain injury caused by the build-up of fluid, I also developed Hemiplegia, which in my case affects my right side.
Hemiplegia is essentially a form of cerebral palsy that manifests itself as lifelong effects of a stroke such as poor fine motor skill in one hand and having a limp.
I experienced severe right side neglect – as a young child I only ever thought I had my left side! I remember feeling very frustrated with being unable to use my right hand.
Luckily, my parents were introduced to Dorothy Seglow, who was the mother of a family friend. She had trained as a Conductor in Conductive Education and worked at the LCCCP. So I started having one-to-one sessions with her at their old centre at the top of Muswell Hill. The sessions involved a variety of activities and exercises that enabled me to develop an awareness of and indeed, the use of, my right side.
The techniques were simple to grasp but I remember it did take a while for me to get the hang of it (I was only about 5 years old!) and even to try to use my right hand initially, and it took some time to see the benefits. Now, with the gift of hindsight, I can definitely see the benefit and vouch for the effectiveness of such techniques.
One of the suggestions I remember very vividly was giving each hand a different name so as to differentiate between them and to allow my parents to prompt me to use my right hand. ‘Toby, this is a two-handed job’ was one of the most common things said to me in the sessions and at home.
As an adult, I find it rather embarrassing that I ever named my hands (I think I called my left hand ‘Ben’ and my right hand ‘John’) but that is in part because they are pretty identical in how well I can use them – aside from fine motor skill. Since then, as I have grown up, I have become more and more independent, and aware of my right side.
Emotionally, Conductive Education helped me to see the worth of having a right hand (I often said as a child I wanted it transplanted or something to that effect) and practically, it has enabled me to develop a much higher level of independence and self-respect.
There are times where I have to use aids but, where possible, I do things using both hands. Being able to use my right hand has also allowed me to travel independently on public transport in London, nationally and even internationally – a massive achievement!
I’ve succeeded in getting through a mixture of mainstream and special need education. I achieved eight good GCSEs, a Distinction for my BTEC National Diploma and most recently, a 2:1 for my Applied Community & Social Studies degree from Coventry University.
My dissertation focused on the impact made by various recent changes to disability benefits (such as the change from Disability Living Allowance to Personal Independence Payments, Employment & Support Allowances and the Work Capability Assessments as well as the impact of the ‘Bedroom Tax’ on people with disabilities). It was quite a challenge getting all that into 8800 words!
I’m now involved in raising awareness of cerebral palsy and advising other young people with a variety of forms of the condition.
I’m looking to either train to be a careers advisor specialising in working with 18 to 24 year olds who experience cerebral palsy or developing a career in charity retail management (hopefully with the LCCCP!).
Based on what I know now about the benefit of Conductive Education and the fact the centre allowed me to develop such an amazing level of independence, I would definitely recommend them to others.
I would have the following message for other young people with cerebral palsy:
- Be proud of who you are and how your cerebral palsy contributes to your personal identity – if you have high tone arms, embrace them!
- Seize every opportunity to raise awareness and remember, people may not always understand; it is up to you to educate them and spread the knowledge about cerebral palsy far and wide.
- If you are at university, do what you can to get involved with student disability campaign work with your Disabled Students’ Group and get involved with student politics – make sure your voice is heard.