“My Jenny, cruelly handicapped by a cold society”.
(Letter first published in the Guardian, Tuesday 8th October 1996, headline by the Guardian Newspaper)
If anything matters in what you read below, it is the fact that so much has not changed. This letter was written 21 years ago and five years after the death of my daughter.
The letter was triggered, incidentally, by an article about screening for handicap and terminating foetuses where handicaps were discovered:
For the four-and-a-half years of her brief life I was proud to be the father of a beautiful but massively handicapped little girl. She was blind, incontinent, incapable of speech or verbal comprehension, and totally dependent upon others. She never knew my name, but she came to know my grip, my touch and my voice, and loved me as she never loved another.
The hardships devolving from her care cannot adequately be described but are perhaps summed up in that one long, terrible night when I started, semi-conscious, from my bed convinced that I was dead – that I had been for years, and that I was in Hell.
Could screening have prevented her birth I would have been spared a great deal. But I would have missed and lost far more. I wish she was with me still, and were I presented with the prospect of another, identical child I would not hesitate to fight again for the preservation of its precious life.
It was not her handicaps which created Hell in my life. All she created was love and joy. It was the society we lived in which handicapped us. It was a parsimonious State and the prejudices of the short-sighted. It was the meagreness of benefits, the inefficiencies of over-stretched hospitals and the lack of adequate respite care.
It was the people who prayed for help on their knees but delivered none on their feet. It was the sanctimonious mewling of middle-class advocates of abortion for handicapped foetuses and all those other inadequates who saws handicap solely as a problem to be solved rather than a challenge to be met.
What of her life? She – my Jenny – knew pain, but she also knew joy and in no small measure. Her pain could be moderated through medicine, and her life and joy were a fluttering, incandescent flame that brightened and warmed the lives of many others.
I can understand how some, faced with the reality of society as it is, might choose to avoid the battel of being parent to a handicapped child. They have my sympathy. But the route of ‘screening out’ handicap is, to me, the advocacy of genocide of the defenceless by the misguided.