A vision of the future that’s within our grasp
Over 27 years ago, David Brandon, the first editor of Community Living, outlined his vision of services and the end of segregation of people in hospitals, ‘special schools’, hostels and adult training centres. David died in 2001 but his spirit lives on in this magazine. Tragically, it seems we are still battling with the same problems. His first editorial, written in April 1987, reproduced here is the first in a series looking back over the years that have seen so many changes – not all for the better.
This is the most important time ever in the history of mental handicap services. For several decades those services have been based on the four sacred pillars of segregated services – the mental handicap hospital, the ‘special school’, the hostel and the adult training centre. New ideas on accommodation and training were hard to find.
Eight years ago, the much maligned Jay Report on training ushered in a new era of opportunity for both staff and consumers. At the time, it proposed radical ideas about service delivery which made most of us gulp. It turned us away from the old institutionalised ideas towards a vision of ordinary living. Such has been the dramatic rate of change, nowadays Jay would be considered almost old-fashioned.
A dramatic influence
Most influential of all in the last five years have been Professor Wolf Wolfensberger’s ideas about ‘normalisation’. This widely misunderstood and abused term has had a dramatic influence on thinking about services and has spawned a movement whose consequences will be seen far outside mental handicap services. ‘Normalisation’ is a lousy term to describe the movement. Its central ideas lie in increasing the perceived value of the consumers and reducing their negative differences from ordinary valued people. Those ideas have formed a foundation for visionary documents like the ‘All Wales Mental Handicap Strategy’ and the North West of England’s ‘Model District Service’.
Geographicallly, since Jay, the changes have been uneven. Certain parts of Britain have been backwoodsmen. Northern Ireland has dragged its feet. Grampian even built a new mental handicap hospital which houses more handicapped children than the whole of the North West of England.
Other parts have surged forwards. The North Western Region has begun the translation of its visionary document from the drawing board into real services. Not without difficulty. Bolton and Manchester health districts and social services departments protest that the regional monies, based on average regional costs, are entirely insufficient to provide effective quality services. They want more than £16,000 per person rather than £12,000.
Nevertheless, the quarrels are within the family. They are about important bits and pieces in the dream, not the dream itself. People’s enthusiasm about that vision of ‘community care’ which replaces huge hospitals with ordinary housing and intensive support is virtually undiminished. Few young qualified nurses want to work in the hospitals. They see their future in the community.
Re-thinking our services
As the population of the old hospitals runs down, attention rightly turns to ‘community facilities’. A large part of this magazine is devoted to rethinking our ATC (Adult Training Centre) and hostel services. How do we re-cast old institutions in new forms to meet the increasing demands of our consumers, well into the next century?
The starting point must be in listening to our consumers. For too long they have remained unheard. To be labelled handicapped has meant to be robbed of your dreams. In our booklet ‘Beginning to Listen’, we showed that mentally handicapped people have similar ambitions to ourselves. They want their own accommodation with the necessary support and paid work. ”I want a flat like my mum’s”. ”I want to live with my boyfriend”. “I want a real job and a real wage”.
In our listening to consumers, we will hear five themes over and over again. A demand for more equal relationships. “I don’t want to be talked down to like a child. I am an adult“. People desperately want to move away from the parent/child relationships which have been such a feature of the last 20 years. We will hear a demand for more choices. “I don’t want to go to the ATC but there’s nothing else. I want proper training and to be paid for the work I do”. We have given people improved services – moved out of the spartan church halls into purpose built training centres – now our consumers want to move out of those.
The demand for more individuality and privacy. “I want my own flat. I want sex with my girlfriend”. Increased mixing. I don’t want to mix all the time with handicapped people. I want to mix with ordinary people”. They want to use the facilities the rest of us use – the colleges, the evening classes, the community centres…. and lastly, and perhaps most importantly, increased participation. That means the end of professional colonialism – “I know what’s best for you” attitudes which have been so much a part of training to be a professional in the past. Ultimately, that must mean more and more management of projects by handicapped people themselves.
We are privileged to be part of an important revolution. It is making more and more people want to work in our services. We are exciting people with our vision and flexibility. We will excite them a great deal more if we turn the rhetoric into reality.
Rare combination
Parts of the revolution will be threatening. It will mean us working in quite different ways. The relationships will have to be closer, more sharing, less hierarchical. There are some merits in social distance, in professional detachment. But really effective services are based on a rare combination of love and wisdom.
We are convinced that these changes will enrich our services. Normalisation is becoming the ‘common sense’ of our time. It seems obvious now that people with mental handicap ought to live in ordinary houses with intensive support. It is the institutionalists who have now to defend their case. It was very far from obvious ten years ago. That is the measure of how far we have come. But there is a long way to travel to make our services effective. This magazine hopes to be a friend along the way.
References
All Wales Strategy for the Development of Services for Mentally Handicapped People (1983) Welsh Office.
Brandon, D. and Ridley, J. Beginning to Listen. Campaign for People with a Mental Handicap.
Model District Service. (1982) North Western Regional Health Authority.
