'Are we still in hospital Mummy?' 1960/2011 revisited

Dr Deborah Phillips
Cornwall College, Combined Universities of Cornwall

This paper draws on my personal, practice and academic/research experiences of 'learning difficulties'. I explore some of these areas before offering recommendations for medics, social care professionals and people with learning difficulties themselves.

As a child I was born with an impairment which at the time intrigued the medical profession. Until the age of sixteen, when I withdrew myself from these treatments and interventions, I spent a long time in London hospitals. Like many other disabled people I was experimented on as well as being an object of interest and speculation. I was labelled as being possibly 'mentally retarded' with a low life expectancy. The experience was a sharp learning curb for me. Often I was afraid but I also learnt to be tolerant, resilient and challenging. I later saw these attributes and skills reflected in the people I worked with. However, more recently I contacted a potentially lethal bacterial infection and spent some time in hospital. When I regained consciousness after five weeks I was convinced I was that child again and asked my Mum if we were 'still in hospital?' Reflecting on these experiences has again led me to question the medical treatment people with 'learning difficulties' continue to undergo.

This quest has also embraced work I have done with people labelled in this way; both in practice settings and research projects. In the late 1980s I worked with people who were coming out of the long term institutions. They had incredible stories to tell and were completely encased in the 'medical' model. I was lucky enough to work for an organisation who took a completely different approach – that of a social model understanding and the ethos that people were 'people first' and labels can be challenged and changed. Health needs were supported with complementary therapies (herbal or homeopathic remedies, osteopathy) a healthy diet and exercise. After years of medication the impact of these changes not only saw benefits in people's wellbeing and behaviour but the stereotypical characteristics of assumed 'learning difficulties' (dribbling, swaying/rocking, poor concentration) either reduced or disappeared as medication was reviewed or discontinued. This demonstrated how the side effects of medication can create conditions which are contributed to the persons 'learning difficulty'. This situation was also evident in the narrative accounts collected during a later research project. Here the participants were mainly older women who had spent most of their lives in the 'hospital prisons' as they described. In these cases women had experienced extreme medical intervention in the form of ECT, sterilisation, being 'polyeyed' and locked away.

Drawing on these accounts and experiences I conclude by suggesting that if the conflict between the medical and social explanation of this label remains, and if these concerns are not addressed, then people who are labelled in this way will remain in an ambiguous position within our current health/care systems.