“I am 19, have just started my first term at University and am living away from home for the first time. This has been difficult because it means I have left my sister alone with my parents. She is 26 years old and severely multiply learning disabled. When I was at home I would be taken her to a special club she went to. My parents are unable to do that themselves and won’t let anyone else. Without me there, Sarah does nothing. She stays at home with them all day and never even goes to the shops. If I try talking to anyone else about it they just say Sarah is lucky my parents want to look after her. I know of the death of Beverley Lewis and can understand how it happened. Should I come home?”
Beverley Lewis, a multiply learning disabled young woman died terribly. Her mother was her sole caretaker and a devoted one until her untreated mental illness became apparent and Beverley’s environment deteriorated rapidly. Beverley was found dead, underweight and in appalling squalor. The coroner was unwilling to state her death was due to lack of care but accepted that the Mental Health Act had failed Beverley. If Mr D feels that his parents are emotionally incapable of looking after Sarah then he does need to contact his local Social Services Department. However, he seems more concerned with the quality of Sarah’s life than with physical neglect and danger.
Families, workers and the legal system are all facing difficult ethical and emotional dilemmas when dealing with severely and profoundly learning disabled adults who will never be able to live without support. For although at times, every such individual can function at their correct chronological age, for most of the time this is not possible. Failure to appreciate the two different states can lead to total infantilisation on the one hand or over-pressurised normalisation on the other.
Mr P. is a 36 year old severely disabled and depressed man who lives in a hostel. Every morning of the week his workers wake him up, wash, dress and feed him and then drive him to the Centre where he will spend his day. His protests are disregarded. “Otherwise he would just spend the day unwashed, unshaven, lying in bed”, said one worker. Unlike depressed men and women who are not disabled he has no choice. Similarly, Sarah has no choice about going out. Her parents have decided she must stay in because they do. On the other side of the spectrum, Ms. L., aged 19 who lives in a community home is taken, without any request on her part, to discos and horror films because “that is what people of her age like doing”, which is not necessarily true or useful for Ms. L.
These sharp alternations are not surprising. A severely learning disabled adult is not going to “grow out” of their disability. In the best circumstances parents and workers face the reality of what is unalterable as well as having expectancy and provision for possible change. Circumstances are rarely optimum, however. If Mrs Smith aged 70 has to toilet her adult son and copes with this by seeing him as a young child, it is hard for her to register his distress when she calls him “naughty” for not finishing his breakfast. Too often “community care” means tired ageing mothers having to continue a parenting task because there are inadequate or unsuitable local resources.
Mr D. does not say whether Sarah feels imprisoned or cosy. We may not like the symbiotic relationship that develops between some adult children and their parents (learning disabled or not) but that does not give us the legal right to remove them. Similarly, until a law is broken or mental health breaks down we have no rights to stop normal adults from selecting abusive partners.
However, there is no doubt that learning disabled adults are especially vulnerable to exploitation, neglect and abuse and there is growing pressure for the creation of Guardian or Advocate schemes whereby vulnerable adults can have their needs and rights attended to.
Mr D has just left home to go to University and start his own separate life. It is particularly difficult for someone with a learning disabled sibling to enjoy their own successes and growing independence. Brothers and sisters compete with each other over academic, physical, social and emotional arenas wanting to be their parents’ best child. A learning disabled sibling is defeated unfairly, arousing guilt. Mr D will be doing the best he can for his sister if he manages his independent life well whilst showing she remains in his thoughts. If she cannot read at all, taped letters or a photo might help her with his absence and keep them in touch and this may remind his parents and others also that it is going to be a difficult loss for his sister as well as for them.
Some parents deal with their distress over an adult learning disabled child by giving less attention to their normal child. Might Mr D. be feeling sad at leaving home for the first time knowing his older sister has never had to make that move and is receiving the attention of both parents? Might the parents be feeling envious of their healthy son who has left home and subsequently enjoying the dependence of their daughter destructively?
In the meantime, very few local service offer the kind of personal Leisure Project that psychologist Michelle Pundick pioneered in Barnet whereby learning disabled adults are taken for a variety of self-chosen activities with transport included. Without good local resources the severely learning disabled are indeed all too often living in family or community prisons.