Caring for Children with Severe Disabilities: Boundaried and Relational Rights

I have known David all his life. I know when he is happy, when he is sad or when he is in pain. I thought it was disgusting that these doctors did not take that into account.... Yes, David does have a different quality of life, but so does everyone. I don't have the same quality of life as a film star jetting round the world. David has never walked, so he doesn't know what it's like. Being handicapped and being in pain are different things.... Yes, I was angry. I was angry for David because I knew him best and I needed to stick up for him. I needed to give him a voice. (Carol Glass quoted in Day, 2004) We need to take decisions away from the side of the hospital bed. Life and death decisions are a human rights issue not just a medical issue. Afuller and more comprehensive picture will be gained in the context of the individual's life within the family or wider community.... The generally accepted view that the quality of life that a disabled person leads has limited value, needs to be challenged. (Richard Parnell, Research Manager, Scope quoted on David Glass website < http://www. members. tripod. com/davidglass1>) Parents see 24-hour reality of a severely disabled child who has good times and bad times. Hospital staff see the child at a point in time -commonly a low point and are less aware of the person behind the disability than the parents are. Parenting is about a relationship and the voice of those who have that relationship must be heard. (Brian McGinnis, Special Advisor, Mencap, BBC News Online, Thursday April 22nd 1999)