Down syndrome

Catherine writes in praise Of Down syndrome

I write in response partly to Rebecca's article and partly in response to your pages about screening. I have a daughter with Downs Syndrome who was born when I was 31 and I have a son born when I was 37 who is a typical teenage boy, with no disability.

When Karen was born in 1979, it was a shock to us. We were not told until she was five days old, by which time we had come to love her and had built up lots of dreams about her future. My husband, myself and three of Karen's grandparents were university graduates and we expected to have children who would follow in our footsteps. We already had a three year old daughter called Elizabeth who had talked at 14 months. My first thoughts were negative. I thought I would never be able to live a "normal" life again, that Karen was not a complete person, and that Elizabeth would feel like an "only "child. However, I was wrong. After the initial grieving, I started to ask questions, read books and meet other parents. Karen had physiotherapy, a home teacher and lots of other help, and I had moral support and practical help from many sources. Karen went to a "special " school, because then only a very few children were being included in mainstream schools. She then went on to college for three years. Her elder sister had gone to Oxford and emerged after three years( in 1997) with a First in Physics. Karen went to a wonderful college called Derwen College, far away in deepest Shropshire. Three years later she emerged with certificates in English and Art, skills in candle making , gardening and animal care and most of all a great deal of self confidence and independence.

In September this year she moved as a tenant into a flat, with a friend who also has Downs Syndrome, just near Westminster Abbey. They have some support but Karen has learned very quickly to get round London on her own by public transport and is taking courses in Art, Creative Dance, Photography and Relaxation and Massage. She has won a gold medal swimming , in the Special Olympics and has had an occasional career as a model, as well as appearing on TV twice.

When Karen was 6 and I was 37 I found I was expecting my third child. The doctors tried to persuade me to have amniocentesis but I refused. I could not feel justified in terminating a child with Downs Syndrome. Down's syndrome is neither painful, nor life threatening nor a disease.

Three reasons are given to justify termination - one is that people with high support needs are expensive to the taxpayer, the second is that anyone with a disability leads a miserable life and the third is that having a handicapped child is an intolerable burden to the family. The first is untrue. One study in the BMJ in the 1980s claimed that the life time costs of caring for a child with Downs Syndrome were 120,000 compared to the cost of 38,000 to screen for and terminate that child. This assumed that the child would receive very expensive specialist support, have a lifetime of dependency and never contribute in any way to society. The second is untrue. Karen leads a very happy, fulfilled and busy life , has lots of friends and a good relationship with her siblings and parents. As for the third argument, our family life has been happy and although there have been some difficult times, that is true for any family.

I will step off my soapbox now!

Catherine

--------------------------------------------------------------------------------

<< Back