Learning difficulties progress, self advocacy and 60 years of Mencap

With memories of long-stay hospitals beginning to recede and a broad concensus for policies promoting self-advocacy and  employment, people with learning difficulties are facing a brighter future than at any time in the past. Anabel Unity Sale reports, as Mencap celebrates its 60th anniversary

The terminology to describe learning difficulty stems from Classical times: Greek, idios; Latin, idiota. These words are now considered derogatory as language and attitudes have evolved. Progress has been particularly rapid over the past halfcentury, as a new book demonstrates.(1) All About Us! by Lord Brian Rix, looks at the first 60 years of learning difficulty charity Mencap and changes in the sector over this period.

For Andrew Lee, director of People First Self Advocacy, policymakers deserve some credit for the improved climate. “In the last 20 years there has been a lot of new legislation that has enabled things to actively move on.”

Lee, who has a learning difficulty himself, believes the growth of self-advocacy is helping improve the quality of services but is concerned that some groups still lack the funding to survive in the long term.

In 60 years’ time Lee wants people with learning difficulties to be running the services they want, as well as having greater involvement in primary health care services and politics. Here we talk to three people with learning difficulties who have had very different experiences over the past six decades. 

LONG-STAY HOSPITAL
Brian Easton
Sixty-nine-year-old Brian Easton shudders when he looks back at his 17 years living in special hospitals. At 15 Brian moved into a long-stay hospital in London. “It was terrible there. They locked the doors; there was no daylight. It was a horrible feeling being in there.” He was to live in a further five such hospitals in the London area. 

An only child, Brian had a breakdown when he was 12 and began having epileptic fits when he was 15. On the advice of  doctors his parents moved him into a long-stay hospital to deal with the fits. At one of the hospitals he lived in he worked  repairing telephones during the day. During breaks he would sit in the hospital grounds as he could not go out alone. He found it hard to make friends with other residents: “I didn’t get on with them. They said horrible things to me, I ignored them.”

In 1970, he left his last hospital to move in with two carers before settling into a supported living hostel now run by Wandsworth
 Council in south London. The hostel has between three and six staff on shift at any one time and houses 19 other residents.

Brian has his own room, which he has bought furniture for, and he does his own laundry, washes up and tidies his room. He  says: “I wouldn’t want to go back to hospital again, I wouldn’t want to be punished again.”

SELF-ADVOCACY
Mark Brookes
Becoming involved in self-advocacy is one of the most significant things 40-year-old Mark Brookes says he has achieved.  When he first moved from Stoke on Trent to London 20 years ago he had never heard of advocacy. Although he knew he had a learning difficulty, his mother was very protective of him so he lacked any indepth knowledge. “I didn’t really know much about learning difficulties. I knew there were services but I didn’t want to use them, I just wanted to get a job and support myself.”

For several years, he had a menial office role before finding himself unemployed at the age of 28. A chance meeting in 1994 with Steve Lightfoot, from Havering Council’s social services department, led to Mark being invited to become involved in the committee setting up the self-advocacy group Havering People First.

The council had closed down a large local day centre and decided that launching one of the first UK branches of People First would be a constructive move. Mark was excited to be part of this and became the committee’s treasurer. “Steve told me about selfadvocacy and I read books on it and thought ‘Wow! I didn’t know people with learning difficulties could do this’.”

Mark spoke to social services professionals and local organisations about how people with learning difficulties could be encouraged to stand up for themselves. He then took a paid job, funded by the European Union, at Havering People First to train people with learning difficulties. “I felt so proud when I went abroad for the first time. We went to Greece to show them our training and update them on issues we were facing.”

In 1999 Mark joined Values into Action, another self-advocacy organisation, to conduct research into decision-making for  people with learning difficulties. He has also been an advocacy project worker and is now engaged in work on individualised budgets. “I feel honoured that I have had this chance. Self-advocacy is rewarding because even now it’s still new and there is a debate around it.”

EMPLOYMENT
Doreen Chrapala
Doreen loves having a job. She currently works in the post room of Citigroup, delivering post around the company’s office in London’s Canary Wharf. Doreen was attracted to the position, which she found via a jobcentre, because of her treatment during the interview. “They asked me about my capabilities and not about my CV. I hadn’t had that type of interview before and it made me feel good about myself. It’s hard to put into words when you’ve been for so many interviews where they just look at the CV to explain what it was like when Citigroup actually looked at me as a person.”

She gets a lot of satisfaction from her job: “You feel good about yourself and have a reason for getting up.”

Now aged 50, Doreen’s first job was in a jewellery warehouse after she left school at 17. Her careers adviser suggested the  position to her and she stayed for six months before moving to BT to fill a temporary vacancy in the post room. She liked it so much that she stayed for 28 years before leaving to take a break. After a two-year sabbatical Doreen tried to get another job but found it increasingly difficult, which made her feel unhappy. “I went for interviews at 25 companies but they didn’t want me.” It wasn’t until she had the Citigroup interview that things improved.

She would like other people with learning difficulties to be able to work if they want. “You never know what you can do until  you try.” She urges employers to be understanding and listen to what their staff with learning difficulties say.

● Lord Brian Rix, All About Us! The Story of People with a Learning Disability and Mencap , Mencap, 2006

MILESTONES
1247 – Bethlehem Royal Hospital established in Bishopsgate, London.
1491 – Holy Cross Hospital in Bath for lepers reconstituted as Morotrophium – a place caring for “morons”.
1742 – Act to prevent the Marriage of Lunatics.
1812 – The Law Concerning Idiots, Lunatics and Other Persons Non Compotes Mentis by George Dale Collinson. One of the earliest surveys of the history of legislation on learning difficulties and mental illness.
1894 – Lunatic Asylums: Their Organisation and Management by Charles Mercer, senior assistant medical officer at Leavesden, encourages person-centred planning.
1930 – Mental Health Treatment Act. Amended Lunacy Acts 1890-1922 and Mental Deficiency Act 1913-1927. Asylums become mental hospitals. Ended lunacy category, now persons of unsound mind.
1944 – Disabled Persons (Employment) Act.
1946 – Creation of National Health Service lead to the development model of disability.
1990 – NHS and Community Care Act introduces new procedures for care in the community.
2001 – Valuing People white paper pledges to transform service for people with learning difficulties and encourage greater user involvement.
2005 – Disability Discrimination Act, strengthened and broadened the Disability Discrimination Act 1995.
2006 – Electoral Administration Act which removed the terms “lunatics and idiots” from voting laws and made clear that people with learning difficulties have a right to vote.

Source: Lord Rix, All About Us!, Mencap, November 2006

Related article
Mencap chief executive Jo Williams on what the charity wants for people with learning disabilities 

Contact the author
 Anabel Unity Sale

This article appears in the 23 November issue under the headline “Doing it for themselves”