By Professor Norman Nevin Retired consultant clinical geneticist, Belfast City Hospital

John's book was a labour of love

He has severe spastic cerebral palsy which affected his speech and his mobility.

His speech is a major impediment and as he admits few people could 'understand his speech lingo'.

He is intelligent with much locked away in his mind but unable to communicate it.

At our first meeting, John impressed me with his determination and obvious courage in coping with and adapting to his severe disability.

Despite what may appear to be insurmountable barriers, patients with disability can overcome the odds

He had a positive and enthusiastic outlook on life.

Just as he was leaving the clinic, almost as a throwaway remark, I suggested that he should write about his experiences.

He could focus on how his disability had affected him as a person, his perceptions of other people's attitudes to him, his ambitions and also his Christian faith.

Huge undertaking

I had failed to appreciate the enormity of the task.

John's constant involuntary movements meant he is unable to use his fingers to write or type; he has to punch out each letter with a pointer attached to a head harness.

John is a skilled artist

You can imagine my surprise, when five years later, John arrived at my clinic and placed on the desk a completed manuscript.

When I read John's story, I was so impressed that I encouraged him to have it published.

With the help of some friends, it was published under the title 'Life on Four Wheels'.

It showed an intelligent person within a severely incapacitated body.

He had a great love for his father - whom he describes as 'a king in my eyes' - and his mother.

Longed to hold

As a youngster, he longed to show his love for his parents, but he could not hold out his arms and embrace them.

As he looked back over his school years, he felt that he had been born too early.

An example of John's work

If only it had been today much more help would be available and perhaps he might be able to walk and speak.

At a day centre he was taught to make baskets with the aid of a head harness.

He writes: "I remember sitting thinking, is this the height of my life making trays and baskets."

Fortunately, two new instructors saw that John had much more potential.

They encouraged him to paint in oils and to pursue a course in Art and English Literature. In both he was successful.

Top award

In 1997 John was nominated for a disability achievement award.

Of over 500 nominations, John came top.

He writes: "As the silver cup was presented to me, my mind went back to the first day I sat down to write the book. I really thought I would never complete it."

John's achievement in putting his thoughts about his disability into written words made me feel very humble.

He had shown immense determination and skills with the completion of 'Life on Four Wheels'.

As doctors, we are only in contact with our patient for 30-45 minutes - far too short to even begin to understand our patients' aspirations, frustrations and day-to-day concerns.

It also again emphasised to me that despite what may appear to be insurmountable barriers, with encouragement, ingenuity and support, patients with disability can overcome the odds.

John also reminded me that appearances are often deceptive.

We tend to take the book by its cover. John would ask us not to "look at the outer shell of me but try and look deeper and see what I have to offer" and then maybe we would change our attitude towards patients with disability.

Maybe!