death counts: the challenge of death and dying in learning disability services
Stuart Todd Senior Research Fellow, Welsh Centre for Learning Disabilities, Cardiff University
By talking to people with learning disabilities, their parents and support workers, Stuart Todd has built up a disturbing picture of the way matters surrounding death and dying are handled by our services. They include hiding the truth from service users, disenfranchising bereaved parents, and staff not being allowed to offer the end-of-life care they would like. Here he throws down the challenge for service providers to show more respect to everyone involved in the process of dying
There’s nothing new in declaring that inequality and difference can characterise the lives of people with learning disabilities. However, it is novel to argue that inequality and difference might influence the manner of their deaths and the way they are remembered. Death does not wash away inequalities, rather they will outlive us. Yet, one might argue that there are so many ways in which learning disability impacts upon the lives of individuals that our attention must be focused exclusively upon issues of living, for example, in relation to education, employment, housing, relationships and health. Death, in this context, is a distraction. Consider what it would mean if the deaths of people with learning disability were of such little concern to us. Would this also mean that their lives were of little value?
Learning Disability Practice. 7, 10,12-15. doi: 10.7748/ldp2004.12.7.10.12.c1551