Self-Advocacy History Before 1984

Author: Paul Williams

A distinction needs to be drawn between individual self-advocacy and group self-advocacy. Studies of the history of self-advocacy nearly always refer to the history of group self-advocacy, but support for individual self-advocacy should not be forgotten. 

Many examples of individual self-advocacy could be identified well back in years. For example, two books were written by British people with learning disabilities in 1967 (The World of Nigel Hunt by Nigel Hunt) and 1974 (Tongue Tied by Joseph Deacon). There are many more recent examples, for example the Open University book Know Me As I Am is a wonderful exposition of individual self-advocacy. Contributions to the OU History Group, conferences and books are good examples too.

1984 saw the beginning of a strong movement in the UK to establish independent group self-advocacy along the lines of the People First movement in America. Quite rightly, 1984 is seen as the date of origin of this more authentic and widespread group self-advocacy movement. However, a lot went on before 1984 that laid the groundwork for this.

In 1968 a conference for people with learning disabilities was held in Sweden on the topic of leisure activities. This led to the Our Life conference, organised by Values Into Action (VIA), in the UK in 1972. This inspired a conference in British Columbia, Canada, in 1973. There followed a conference in Oregon, USA in 1974, organised by a group that coined the name ‘People First’.

Further conferences took place throughout the 1970s and early 1980s in the UK and USA. I was a helper and discussion leader at the first Our Life conference, and I organised and wrote reports of several further conferences for VIA during the 1970s and early 80s.

The 1972 Our Life conference organised by VIA in Britain was a catalyst for the first conferences in Canada and the USA which began the People First movement in America. Britain can take some credit for founding the self-advocacy movement 12 years before the 1984 international conference.

Some local groups had existed for some time in the USA (e.g. the Boston Mohawks and Squaws, founded around 1960). In Britain the main form of groups was as trainee or student committees or councils in day services (called Adult Training Centres at the time).

A survey in 1980 by Bronach Crawley at the Hester Adrian Research Centre, Manchester University, found that 123 ATCs (about a third of the total in England and Wales) had or had had a student or trainee council or committee. I think the origin of the idea for these representations of the views of people attending ATCs probably lay in courses of training for staff. Until 1963 the qualification for staff was the Diploma of the National Association for Mental Health (now called Mind). After 1963 it was the Diploma in Teaching Mentally Handicapped Adults taught in Further Education Colleges.

A theme amongst some of the ATC councils was for those who attended the centres to be called students rather than trainees, and some groups made contact with the National Union of Students to explore the possibility of membership. This was granted to those attending some centres, and some council members attended NUS conferences and at least one gave a speech at one of them.

Before 1984 there were very few self-advocacy groups in Britain that were independent of services. However, there were a few. For example an independent group was founded in 1980 in Camden, London and a group supported by the London Region of Mencap was established in 1982.

A film was made of a 1975 conference in Oregon and it was produced for sale in 1976. It was called People First (still available on YouTube). A copy was bought by Concord Films in the UK and was made available for hire. In both the USA and the UK, the film was shown extensively at conferences, courses and other meetings in the late 1970s and early 1980s.

During the 1970s, several visitors from the UK to America, and from the USA to Britain, brought information and materials about the People First movement in the States. Three members of VIA spent time in Omaha, Nebraska, in 1977 studying the community-based service called ENCOR, the Eastern Nebraska Community Office of Retardation. They wrote a report, published by VIA in 1978, which included an account of ‘Project Two’, an independent self-advocacy group which had evolved from ENCOR (which the group called ‘Project One’ and hence the group’s name). Ed Skarnulis, Director of Family Services at ENCOR, took part in a conference (for professionals) of the International Cerebral Palsy Society held in Oxford, UK, in 1978, where he spoke about Project Two and the People First movement in the US. A frequent visitor to the UK in the 70s and 80s was Gunnar Dybwad, a professor at Brandeis University in Boston, Massachusetts, who was a leader of support for parents’ groups and self-advocacy groups internationally. He was usually hosted by VIA and often spoke to meetings of members about self-advocacy.

Following a paper I wrote on equality between disabled and non-disabled people (Our Mutual Handicap, published by VIA in 1978), I was given an Award by the (American) Association for Retarded Citizens to spend five weeks studying the self-advocacy movement in the USA. This took place in 1979 and resulted in collaboration between me and a prominent adviser to the US People First movement, Bonnie Shoultz, to write a full length book recounting the history of self-advocacy in the US and Britain, with materials and advice for embryo groups, and contributions from group members themselves. This was published by Souvenir Press in the UK in 1982 and in the US by Indiana University Press in 1983.

In 1980, VIA invited two leading advisers to the US People First movement, Bonnie Shoultz and Shirley Dean, and a man with Down’s syndrome who was on the Board of the self-advocacy group ‘Project Two’ in Nebraska, Tom Houlihan, to come to Britain to talk about self-advocacy. They toured round the country giving talks to spread information about People First and to stimulate interest in self-advocacy.

John Hersov began work at the City Literary Institute in London in 1981 and began running courses for people with learning disabilities on individual self-advocacy (called Speaking Up). Another organisation that began doing this in 1983 was Skills For People in Newcastle. Adult education courses for people with learning disabilities in other colleges often also had this as one of their aims.

The television programme Link about disability issues devoted several programmes to group self-advocacy in the early 1980s, interviewing a range of people involved including ATC council members. I was interviewed in one of them about my trip to America.

Mencap had been a bit equivocal in its interest in and support for self-advocacy in the 1970s, but in 1981 Brian Rix, Secretary-General of Mencap, appeared on Link and expressed his support for self-advocacy. In 1982 a Participation Forum was started in the London Division of Mencap, with John Hersov as its adviser. The group began strongly promoting individual and group self-advocacy, running conferences and holding promotional meetings.

From 1980 onwards, regular courses and workshops were held at Castle Priory College to stimulate self-advocacy and share advice on establishing groups, mostly organised and run by me.

Gary Bourlet attended the City Lit in London in 1983 and became inspired with the idea of self-advocacy groups. He and John Hersov began to tour the country to spread the word.

By 1984, interest in self-advocacy was strong in several organisations in Britain, including Values Into Action, Scope, Mencap, the City Lit Institute, Hester Adrian Research Centre, the Association of Professions for the Mentally Handicapped, the National Bureau for Handicapped Students (and through them the National Union of Students), and the King’s Fund Centre. Funds were raised to send a small group of people to an International People First conference in Tacoma, Washington State in the USA. At that conference a vote was taken to hold the next international conference in the UK, and this was duly held in Twickenham in 1988. Gary Bourlet had attended the 1984 conference, and on his return he and others founded People First London and Thames Region which adopted a brief to encourage the founding of independent self-advocacy groups throughout the UK and to encourage adoption of the name People First.

Most of the activities described continued after 1984 to support the growing People First style independent self-advocacy movement. Other sources of support were developed by organisations such as The Open University, the Norah Fry Research Centre at Bristol University, and the Rowntree Trust. A number of resources for support and advice began to be produced, including videos of groups in action. Some forums for bringing groups together and helping them to communicate with each other were developed, including national organisations in England, Wales and Scotland.

The publisher is the Centre for Welfare Reform.

Self-Advocacy History Before 1984 © Paul Williams 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.