The Problem with Quality of Life

Progress has been made on the journey towards human rights and citizenship for people with disabilities. Large institutions are now seen as unacceptable, human right standards have been defined by the United Nations and accepted by many nation states. There have been innovations in support, personalisation, self-direction and independent living. However, it is also clear that there are different ideas about where this journey should take us. This paper is a reflection on the EURECO Forum in March 2022, where academics and professionals discussed the concept of Quality of Life. It share several concerns:

People with disabilities were rather absent and insufficient weight was given to ideas like human rights, entitlements and self determination.

Some felt that deinstitutionalisation was nearly complete and that we should be seeking a new stasis, built on current norms of good practice. There was no acknowledgment of the re-emergence forms of eugenics, institutionalisation and discrimination nor of the possibility of much greater levels of inclusion and citizenship than are currently being achieved.

There was too much faith in the capacity of government, academia and services to establish new systems to achieve Quality of Life for people with disabilities. The hazards of hubris, objectification and commodification didn’t get the attention they might.

This is not to suggest that the conference was anything other than a positive effort to assess where we currently stand and the challenges ahead. However we must be cautious because there are still too many

threats to the rights of people with disabilities We need to create a bold vision of equal citizenship for all and move beyond standards that are still set too low.