Assistive technology and me: living an independent life with cerebral palsy

clive-gilbertWe are pleased to introduce a guest blogger for our special post for World Cerebral Palsy Day. Clive Gilbert was born with profound cerebral palsy and is an extensive user of assistive technology. Here he looks back on his childhood and how much of an important part technology played in his development into a becoming an independent young man.

It was the morning of my first day at a special needs school and, after being introduced to my new classmates and classroom assistants, my teacher had reeled off a list of activities for the day ending with “perhaps in the afternoon you could have a go on the apple mat”.

“What in the world is an ‘apple mat’?”, I had wondered to myself. I have the physical disability cerebral palsy and am unable to walk, so the thought of being lifted from my wheelchair by a group of relative strangers (albeit very friendly and professional strangers) onto what I expected to be a soft playmat decorated with pictures of apples struck horror into my shy seven-year-old self.  On the other hand, I did think “if every day of school turns out to be like this, my burgeoning academic career will be a lot easier than I had been led to believe.”

It was only later that I discovered I had misheard my teacher who had been referring to the assortment of large square boxes on the table in the corner of the classroom called an Apple Mac!

Conductive education Vs technological solutions

This was one of my first encounters with a personal computer. Up to the age of seven, most of my education had taken place at a school that specialised in a particular form of physiotherapy originating in Hungary known as conductive education.  The school’s entire curriculum was focussed on nurturing disabled children’s physical abilities by employing a combination of exercises and singing on bench-like wooden tables and chairs.  At the time, conductive education conflicted with sophisticated technological solutions. The most advanced assistive technologies I possessed in these years were my wheelchair (more of a buggy) and a standing ladder.

Assistive technology – from Blu Tac to electric wheelchairs

Having gone through the rest of school and university and embarked on a career with the aid of powerful assistive technologies, it is difficult to imagine living without these products. I have always relied on family members, friends, personal assistants and a group of professionals to lead a fulfilling life. However, technology has provided the spark of personal autonomy that has enabled me to discover my true capabilities by bridging gaps of experience that no amount of human assistance can help one to cross. As trivial as it may seem, buzzing around the streets of central London in my electric wheelchair without anyone in tow except other anonymous Londoners still fills me with satisfaction and pride.

Even when a suitable device for a given context has not yet been invented, a bit of clever thought can often tailor a solution to at least partially fill the gap. Blu Tac, elastic bands and Velcro have held together countless contraptions made from books, pieces of cardboard, plastic containers, among other miscellaneous objects, brought together to make my life easier. For years, I operated my computer using a tracker ball (think: upside down mouse) mounted on a stack of hardback novels so that I could guide it with my chin.

Gadgets that bring endless adventures

The progress of technology – both specialist and mainstream – in the past two decades has brought immeasurable benefits, but there remains a Heath Robinson-esque quality to my setup. Towards the end of my school days, I was referred to have my assistive technology needs evaluated by a group of experts who recommended an integrated system that would allow me to drive my powerchair, operate my computer and control other objects in my environment with a single gadget. They funded the creation of a bespoke joystick mounted on a specially-designed arm which perched under my chin. The controller was patched into my wheelchair which was fitted with an additional gadget that could interact with my computer and a host of other appliances around the home such as the television, hi-fi and light fittings.

Without my equipment, I very much doubt that I would have followed the same path since leaving school. Technology allows me to work independently and learn things about myself far more quickly than would have otherwise been possible if at all. I probably would not have discovered that I enjoyed doing research and honed my skills I need to do my job without being able to experiment alone. Similarly, my friendships have benefited from being able to use social media and email.

Thinking about the parallel universe in which my first encounter with a computer, and all my subsequent adventures in the world of assistive technology, never occurred makes me wonder how future technologies might change the experience of living with a disability. For someone with a physical disability, the prospect of self-driving vehicles, robotic aids and virtual reality seem full of exciting possibilities.

Who knows? Perhaps even the soft play areas of the future will be digital, including the ones adorned with apples.

Subscribe to Clive’s monthly assistive technology bulletin dispATches

Clive has first-hand experience of the transformative potential that technology can bring to the lives of disabled people and has applied it in his career as a freelance research consultant and writer. He writes a monthly bulletin which features the latest in public policy, social affairs and technology which you can subscribe to for free.

[Pictures, L-R: Clive during his conductive education years, interacting with useful technology and Clive today]

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