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My disability and what I have done

Adapted from a speech given to various organizations

by Paul White

Gisborne, New Zealand

 

I have a very rare disability called T.A.R syndrome, which stands for thrombocytopenia and absent radii. Thrombocytopenia means that I have fewer platelets in my blood than normal. Platelets help blood clot, it is the glue of the blood world. In effect this means that I bruise more easily and bleeding takes longer to stop. The absent radii simply means that I am missing the radius bone, which is one of the two forearm bones, from each arm. It is a very rare condition, I was the first person in New Zealand with it, and we were told that there were just 20 people in the world with it. It is so rare that the only information that the hospital could find on it was in German. They had to put a plea over the radio for someone who could understand German to interpret it for them. The condition is also known as Gross-Groh-Wieppel, after the Germans who studied it.

 

When I was born, my parents were told that there was a one in a million chance of them having another child with the same disability. However, when my brother was born it quickly became apparent that either my parents were good at achieving long odds, or that the original estimate was a long way off. They now reckon it is more like 1 in 4. The doctors at the time said the condition was caused by

a "chemical reaction between the chromosomes".

 

Because the condition is so rare, few studies have been done on the causes of it, but this also means that people involved in the medical field are always interested in us.

 

My brother Edward, and Samantha, who has the same disability as us, from Whangarei, New Zealand

 

When I went to school, all sorts of aids were invented to help me cope, such as having a thick rubber sleeve over my pencil to make it easier to grip, and a device called a helping hand, which was like a long stick with a trigger at one end activating a type a clamp at the other end, making it easy to pick up things some distance away. One day my teacher asked my parents to come to school and just watch. What they saw was the other kids in my class playing with my gadgets while I just quietly did my work without using them. While growing up I faced the same challenges that other children faced, such as learning to swim or ride a bike. However, with a disability, these sorts of things were obviously going to be harder for me to do, but this just made me more determined. For instance I was told by a Crippled Children Society Field Officer that it would take me six months to learn to ride a bicycle. I borrowed a friend's bike and taught myself to ride in an afternoon.

 

I also took part in all school activities including the cross-country runs. I played soccer for my school, and enjoyed playing backyard cricket and table-tennis with friends.

 

As I got into my teenage years, like all teenagers, there was the urge to learn to drive a car. My parents bought a second car, a little automatic Honda Civic, with the idea that it be adapted for me, and I would buy it off them when I started working. We went to Palmerston North for me to be assessed for the modifications that would need to be made to the car. However, before we got around to having the modifications made, I went and got my drivers licence. We never did get around to making those modifications. When I had saved up enough to buy a car, I bought a manual car! (note to Americans, a manual is what you would call a stick shift)

 

When I went to high school, I had a bit of a fear that I wouldn't be able to cope with the workload. However, this fear proved groundless, I did well at school, and ended up getting co-dux at Gisborne Boys' High.

 

After I finished high school, I started working as a junior at a local firm of Chartered Accountants and I also studied extramurally towards my University degree. During this time I had some problems with my knee dislocating. This was caused in the first place by falling off my bike. I had a very frustrating year where even just rolling over in bed was enough to cause my knee to dislocate. I found this year very hard as I was very dependent on other people - I value the ability to be independent. When I was little, people would often try to help, but I would refuse, saying "I can do it myself' I found my temporary loss of mobility much more devastating than my permanent disability, because I was born with my disability and I have grown up with it, so I have been able to accommodate the challenges of my disability as part of the daily challenge of life.

 

After two years of work, I went off to study at the University of Canterbury. I lived in the halls of residence there, and had three very enjoyable years there. A friend and I had started building a tandem bicycle in Gisborne. We completed it in Christchurch and enjoyed riding it around. Riding a tandem involves trust in the other person and the ability to co-ordinate with another person.

 

Communication is essential. We also bought two wee little cars neither of which was going. We managed to build a complete engine from the parts of the two broken engines, and managed to get the car going. I was well known in the halls of residence for having the best tool collection. I also bought an old computer at an auction for $130 and used this for typing up my university assignments. I learned a lot about computers from this old machine as it was always breaking down and needing to be fixed.

 

I found most of the lecturers were great, they often asked me if I was coping O.K., and some used my writing speed to work out how fast too speak. A teacher at high school had also used my writing speed as a gauge, but other students complained she was speaking too fast. While at 'varsity, some students expessed their amazement at what I could do, things which I considered just an everyday part of my life, such as cycling, amazed people.

 

Since coming back from University, I have worked here for other local accountancy firms, and last year sat and passed the Institute of Chartered Accountants Final Qualifying Exams, which required a mark of 70 percent to pass, so passing was a huge relief. I have recently been accepted as a member of the Institute. Last year I also went overseas for the first time in my life to attend a friend's wedding in England. I very much enjoyed a quick trip on the train through the Chunnel Tunnel to Paris.

 

I would like to acknowledge the support and encouragement from my parents. They were always proud of what I achieved.

As a family, we have made a point of visiting other families who have young children with similar disabilities. We feel that this is important, as many parents find it quite difficult and need to be able to talk with people who have "been there, done that". It is also inspiring for them to see what we can achieve, one family stared as I drank a cup of tea, realising that their son would be able to do these same things.