Recollections of the early days of deinstitutionalisation and the emergence of self-advocacy by one of its pioneers.
Author: Ann Shearer
Ann Shearer played a leading part in the work to end the institutionalisation of people with learning difficulties in the UK. Here she looks back and remembers some of the key moments in the development of the Campaign for the Mentally Handicapped and the emergence of partnership working and the first stirrings of self-advocacy.
In 1968, as Welfare Correspondent of The Guardian, I was alerted to conditions in a children’s ward in one of our major ‘subnormality’ hospitals. I was horrified by what I saw and from there became increasingly involved in reporting similar failures of service and what seemed to me a denial of residents’ right as citizens to be treated as I myself would wish to be.
In 1971, together with an architect friend Sandra Franklin, I wrote a widely publicised paper outlining the comprehensive community services we felt were needed to ensure this. Very soon a small group of people who felt as strongly as we did came together to form (in the parlance of the day) Campaign for the Mentally Handicapped (CMH), Others soon joined us, including parents and professionals with different areas of expertise and we embarked on an ambitious programme of meetings and publications, backed by international research, with which we pressured government and other decision-makers for change. We were very fortunate to have the generous financial and moral support of the Spastics Society (now Scope), including a small office and printing facilities.
CMH soon became Campaign for Mentally Handicapped People and then Values into Action (VIA) which continued until 2014 when it closed for lack of funds. [Although not in Scotland - Values Into Action Scotland remains a thriving force for positive change.- editor]
From the start, CMH held fast to five basic principles, based on the rights of people with learning difficulties to share in the life that most citizens take for granted. The specialist hospitals which still housed so many people should be closed and replaced by comprehensive community services. These should be integrated with ordinary provision, with extra support where needed; they should be local to the home area of those who used them; and there should be no separate provision for those with the most severe handicaps. And importantly, people with learning difficulties and their families have a right to participate in planning and running the services they need and receive as citizens, (These principles were elaborated in Even Better Services for the Mentally Handicapped, 1971), a riposte to the Government’s own White Paper, Better Service for the Mentally Handicapped.)
Already some CMH members knew of services that met their principles, notably in Nebraska, Sweden and Denmark. I myself had been hugely strengthened by visiting Scandinavian services which took as axiomatic the right of people with learning difficulties to lead an ‘ordinary life’, and the duty of services to make this possible. I learned that these services often listened to what the users thought of them and took this seriously. People with learning difficulties had even been helped to hold a conference which got a lot of publicity and helped service-providers to argue for better funding.
So it was that in 1972, only a year after it was officially founded, CMH ran the first conference in England for people with learning difficulties. We published a report about this called Our Life, which I wrote.
I remember being nervous as the conference started – perhaps we all were. After all, nothing like this had ever happened before!
We met for a summer weekend at Castle Priory, the Spastics Society training college on the banks of the Thames – an ideal setting. We deliberately invited people with a mix of experience, from different parts of the country. In all, 22 participants either lived in specialist hospitals or hostels, or at home but went to specialist day centres or clubs. The total of 37 participants was made up of accompanying staff from hospitals, which themselves decided whether or not to send them. They and the organisers and group leaders (all independent from CMH) were there as observers. We all shared the same accommodation, meals and choice of activities.
‘It’s nice to be able to talk to someone, a thing we haven’t been able to do for years… Until the beginning of this year we haven’t been able to do such things. Well, we could say things, but not without being told to shut up.’
This remark from a delegate who had spent very many years in hospital sums up why CMH wanted to hold the conference. Delegates talked about what they didn’t like in their present life and what they would like in the future, and hearing about each other’s lives gave them the beginnings of the information which is essential to choice. What’s so striking is how ‘ordinary’ and modest their hopes were. They wanted to live in an ordinary house with chosen friends, rather than a ward. They wanted their abilities to be recognised and to be taught new skills, and not to live under unreasonable imposed rules. They felt strongly that they should be better paid for the work they did - wouldn’t we all feel the same?
The conference strengthened CMH’s conviction that people with learning difficulties, like any citizen, have a contribution to make not just to the shape of the services they use but to the wider society. Whether ‘staff’ or ‘organisers’ or ‘participants’, we had a good time together!
It was the participants themselves who steered CMH more clearly towards developing approaches to making ‘participation’ in planning and running services a reality. Those who had come without staff thought it would have been better if they’d been there to hear what people felt able to say in a neutral setting. So it was that in 1973 we held a weekend conference as ‘an experiment in cooperation’ for providers of local and hospital services for one London borough and the people they served.
In all, there were 37 of us, including organisers, independent group leaders and one representative each from the Department of Health and the local Society for Mentally Handicapped Children and Adults. The local social services department and the two hospitals which serve the borough responded generously to the invitation to send delegates, although in the event fewer staff came from the borough than we’d hoped for. We met in a local day centre and CMH found overnight accommodation for out-of-town delegates. This was not ideal, as people couldn’t meet each other over breakfast, and the travel involved – although a good new experience for some - made for a tiring schedule.
But people enjoyed themselves and the most constant question in the final session was when we could meet again – and for longer, so that we could get to know each other better and talk in more depth. Interestingly, it was the staff who were sometimes uneasy in the group discussions – either becoming ‘questioners’ or wanting to prove their own points, rather than really listening to and learning from the experience and hopes of others.
‘Does it change anything, achieve anything?’
This question from a delegate found many echoes as people went back to their hospitals or hostels. For one delegate, it was ‘no good speaking to staff, people say you’re nosey, that’s the answer you’ll get’. For another, ‘very few staff speak to you like you’re speaking to me, people don’t want to listen’. With delegates coming from so many different places, any sort of sustained follow-up was almost impossible.
Nevertheless, CMH was strengthened in its conviction that the participation of recipients is an essential element in the provision of services – and an obligation on service-providers. Any one of them could, for instance, set up groups in hospital wards and hostels, workshops and day centres, in which people could voice concerns and work together for improvements. This was the challenge we were left with. (Listen, Ann Shearer, 1973)
In that same year, CMH held a residential workshop, again at Castle Priory, to look more deeply at how ‘participation’ might work in practice. All but two of the delegates with learning difficulties had been to either one or both the previous conferences. Staff came from hospitals, hostels and training centres; others were social workers. The mixture of group discussion and shared activities was as before and again there was no distinction between providers and receivers of service.
Two things emerged clearly from the discussions. The first was that participation can be very challenging for staff, some of whom were defensive and cynical - and even perhaps resentful, because many commented that they themselves were not consulted about the services in which they worked.
The second was that real participation and working together starts with choice in the small details of everyday life. For one of the group leaders the best session was the one where the group planned a club for people with learning difficulties. Here the staff members changed from being cynical to getting really caught up in the problems of coping with local authorities and their regulations, and details like the colour of walls. The other group members were realistic about the limitations of budgets and showed great ingenuity in decorating and furnishing. ‘There was real sharing here'. (A Workshop on Participation, Paul Williams,1974)
CMH continued to explore how participation could work in practice. For its next event, the following year, The Kings Fund Centre, itself very involved in improving services to people with learning difficulties, gave financial and other help and again Castle Priory provided its generous weekend hospitality. A research team from the University of Surrey were also involved, and the weekend was video-taped so that the proceedings might be used for teaching in future.
This time, there were two preparatory meetings. The first was for about 20 senior staff, to discuss the principle of participation, learn from CMH’s experience and begin to shape the residential weekend. At the second, about 20 people with learning difficulties met with some of those staff to plan the weekend in more detail. The weekend itself was for 35-40 people who had been to this meeting and preferably staff who had been to both. In the event, 44 people came to Castle Priory, of whom 24 had learning difficulties and had nearly all been at the second meeting. Interestingly, some senior staff who came to the first meeting had not persevered, feeling that subsequent meetings would be of ‘more value’ for those who actually worked directly in services.
Again, the weekend was much enjoyed, though as CMH concludes in its report, events such as this cannot suddenly alter the approach of organisations. But each participant can benefit and try to convey their experience to encourage others. And each event can be publicised through reports to spread the word more widely and make a small contribution to a climate of change. (Participation with Mentally Handicapped People, Tim Gauntlet and Paul Williams, 1974, gives a detailed account of how conferences might be organised as well as some theoretical discussion).
Although I continued to be involved with CMH until about 1985, and also with L’Arche, which takes living together as equals as its starting point, I was not involved in the developing self-advocacy movement, although others in CMH were. So there’s not much I can add.
These conferences and CMH’s other work with staff may not seem to amount to much. But remember when they happened! In those days people were still surprised that people with learning difficulties could speak at all, let alone have such ‘normal’ ideas and hopes. We got a great deal of publicity – particularly for Our Life and Listen and I think this added to the groundswell for reform. After all, who could deny such basic aspirations? I think people were somewhat shamed to hear that that is exactly what had been happening for decades.
You ask whether I was changed by self-advocacy. If that in its widest sense means did I learn from those we call ‘learning disabled’, then certainly I did. I learned to listen more closely and patiently to what people, not always as articulate as myself, are trying to convey.
I have been strengthened in my conviction that only a society that meets the needs of its most vulnerable citizens can claim to be ‘civilised’. I have been reminded by the modesty and realism of the aspirations of people with learning difficulties to be more grateful for all I have myself.
Above all, perhaps, I have been awed by the strength of the human spirit, which can survive the deprivations of life in environments like long-stay hospital wards with humour, optimism and courage to explore other ways. Our CMH experiments in participation taught me to respect and take comfort from this human spirit in others whose life experiences may have been so different from my own.
The publisher is the Centre for Welfare Reform.
Awed by the Human Spirit © Ann Shearer 2021.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
Deinstitutionalisation, intellectual disabilities, England, Article
