This page carries contributions from members of the UK Down's syndrome e-mail list.
My cousin Timmy died on March 3. He was 53. He had Down's Syndrome. I want to write about him here because I think of him every day when I read of the battles you guys are fighting over statements and speech therapists and classroom assistants and DLAs and God knows what else. Nobody fought for Timmy, and the state didn't care. This happened in America; presumably, for people of Timmy's generation, it often happened here, too.
He was my father's brother's son. The beginning of his story was a common one in those days, probably unknown now that we live with sophisticated fertility treatments: for years his parents had hoped in vain for a child. Finally, they adopted a girl, Trinkie. Almost immediately, Aunt Dickie got pregnant -- another girl, Anne. Then another pregnancy: Timmy.
I was told of his birth (I was 15). I remember sharply being told six weeks later that something was terribly wrong, that he was being "sent away", that he would probably die soon. After that, a long, long silence. I asked my father once, towards the end of his life. He didn't know what had happened to Timmy.
Aunt Dickie died when her daughters were young teens, and Uncle Larry when they were 17 and 19. Uncle Larry had been a high-flyer at the height of his career, but later fell on hard times. He left his daughters nothing, and some tough years followed for them. They knew their brother had survived infancy, they knew where he was living. They were terrified to get in touch, for fear they would find themselves financially responsible for him.
Years passed. Elements of the family which had been remote, came back together; Anne and Trinkie asked my sister, a doctor, to help them get in touch with Timmy. She was able to reassure them about financial responsibility, and it took her no more than a few phone calls to do the rest. It was wonderful for the family to be in touch, and to learn at last that nothing more "terrible" was wrong with Timmy than trisomy 21.
It was wonderful for the devoted careworkers at Timmy's institutional home, to have long-lost relatives turn up. It doesn't often happen, and Trinkie, in particular, became an energetic supporter and fund-raiser. She was there for Timmy during his last days in hospital. He died of pneumonia.
We learned that Timmy had been in a private nursing home until Uncle Larry's finances declined. Then, aged about ten, he became the responsibility of the State of Connecticut, and by a stroke of good luck, was sent to the excellent institution where he was cared for sensitively and affectionately for the rest of his life.
But his sisters' appearance on the scene came far too late to do Timmy any real good -- he had no speech (although his carers suspected he was "one of the bright ones"), no skills, none of the pleasures therefore which underpin life for most of us, DS and NDA alike: semi-independence, a sense of usefulness, of pride in his achievements, friends and family to talk to. All the things you are working every day to secure for your children, Timmy lacked.
I hope and believe that that no DS children are condemned to a life like Timmy's in Britain or America now. It must, quite recently, have happened to many. Remember Timmy, the next time you're feeling particularly low and frustrated, and give your lucky child an extra hug.
Jean Miles, in Edinburgh, March 2002