Across the country isolated groups of parents and relatives are forming once more to resist the loss of the very services previous generations had fought to set up. Jan Walmsley considers what we can learn from those earlier family advocates.
Derby Mencap started in 1956 because there was nothing for handicapped children. In those days families had to bring them up themselves. (Open University, 1996)
That was Jean Morton remembering the start of the parents’ movement in Derby. She was part of a groundswell of parent advocacy. Between 1946 and 1956, 200 branches were set up, with 12,000 members under the umbrella of the National Association of Parents of Backward Children, an organisation that eventually became Mencap (Shennan, 1980). And they had a fight on their hands. In most parts of the country the only alternative to families caring for a lifetime was a place in an NHS ‘hospital’, those large now discredited institutions. Many children did not even have the right to an education. That only came in 1970. Those parent advocates fought for specialised services – residential homes, day centres, and respite care – that became known as community care.
Much has changed since those days. Good practice is to work with rather than for people with learning disabilities. People can vote. We have Special Olympics. We have successful theatre groups and a recognition that people with learning disabilities are citizens too, with a rightful expectation of an ordinary life. And yet… now those specialised services are closing, there is a loss of professional expertise, and an unrealistic expectation that ‘inclusion’ can be achieved through wishing it so. Across the country isolated groups of parents and relatives are forming once more, to resist the loss of the very services previous generations had fought to set up. Is it time to reinvent the wheel, to recreate and connect the powerful local networks of the mid 20th century?
What are the lessons from the 20th century movement? The work of the Open University’s Social History of Learning Disability Research group (Rolph, 2002, Rolph et al, 2005) gives some pointers.
1. Combat isolation
Time and again family members remember how important it was to find others in similar situations. “You met other people in the same situation as you were, otherwise you tended to feel alone”, said Mary Curtis of the Norfolk and Norwich Society (Rolph 2002 p.43). The Societies helped get rid of the stigma and embarrassment associated with having a disabled child. And they provided people with a social life – which included their sons and daughters.
Isolation may be less acute today, but it remains an issue. Changing Scenes, a Comic Relief funded project in Oxfordshire, brought older carers together. Members commented on its importance:
Before the project we were a range of disparate souls.
It helps us to be together, knowing other people with similar problems.
It’s the best thing that’s happened to me. I had no one to talk to.(Walmsley 2014)
2. Never take no for an answer
Campaigning was a serious business. It required enormous determination to get the authorities even to talk to the parents. Norfolk and Norwich Society took a year to get a meeting with some members of the Mental Health Sub Committee, only to be told they had ‘nothing concrete to offer us at the moment’ (Rolph, 2002 p. 50). And they were refused a place on that same sub committee. They did not give up but set up their own Occupation Centre which the Local Authority eventually adopted.
Parents today are similarly determined. Sara Ryan has campaigned for two years to get justice since her 18 year old son Connor Sparrowhawk died in an NHS facility*. She uses her My Daft Life blog and other social media to great effect (Ryan, 2015). Parents in Haringey have banded together in Save Autism Services in Haringey (SASH, 2015) to work with self advocates to fight local authority plans to close day services. The Changing Scenes older carers in Oxfordshire have learnt to challenge local authority decisions (Walmsley, 2015).
3. Self help
Local societies did not only ask for help from the state – at first this was almost unimaginable. Self help characterised the early days. Members trained as welfare visitors. They set up nurseries, bought holiday chalets, raised money for residential homes, set up and ran centres to provide training and occupation for adults (Rolph, 2002). Their efforts remain with us, in the shape of organisations like Hft and MacIntyre started by parents 50 years ago.
Is self help relevant today? It may be that as state funding is withdrawn, it will be necessary for families to rediscover the energy and initiative of previous generations. Like the families who founded and fund Reserved Power to employ advocates to work with families.
4. Change the narrative
“To try and get the children recognised as people” was how Brenda Nickson, a founder of the Bedford Society, described its aims (Nickson, 2005 p. 78). At a time when people with learning disabilities were often shunned, when expectations were incredibly low, families set out to change the narrative. To gain recognition that their sons and daughters were human beings, deserving not to be shut away but to be supported to live alongside other people in the community. And to gain acceptance that they, their parents, deserved support (Castles, 2004).
Finding a new narrative for the mid 21st century won’t be as easy as it was for the parents of children born in the 1940s and 1950s. Government and local authorities intent on cutting expenditure have co-opted the language of inclusion to justify withdrawing long term support in favour of short term ‘reablement’; to defend the replacement of experienced professionals with volunteers or low paid carers. Fighting to keep segregated services which were too often of poor quality is not an inspiring rallying cry. Isn’t it time to say loud and clear that we believe in inclusion – but inclusion cannot be wished into existence, it is not a cheap option. It needs investment and skilled support.
Families have always been the mainstay of support for people with learning disabilities. Reliance on them is increasing as services where parents handed their children over at the door are part of the past and those that remain shrink (Dumbleton, 2013). Research indicates that families or friends need to be intimately involved if Self Directed Support is to work well for people with learning disabilities (Glendinning et al, 2015).
Some parents are once again picking up the fight begun in the late 1940s. How much more powerful to reinvent the wheel, build a movement networked across the country, to chart what is happening, to campaign and to learn from one another, this time to build a better life not for but with people with learning disabilities and their families.
References
Open University (1996) Learning Disability: Working as Equal People Workbook 2 Milton Keynes: Open University
Castles, K. (2004) Nice average Americans: postwar parents’ groups and the defense of the normal family in Noll, S. and Trent, J. (eds) Mental Retardation in America, New York: New York University Press
Dumbleton, S (2013) Goodies and baddies: equivocal thoughts about families using an autoethnographic approach to explore some tensions between service providers and families of people with learning disabilities Ethics and Social Welfare, Vol. 7 No.3 pp. 282 -292
Glendinning, C. Mitchell, W. and Brooks, J. (2015) Ambiguity in practice? Carers’ roles in personalised social care in England, Health and Social Care in the Community Vol. 23 No 1 pp 23-32
Rolph, S. (2002) Reclaiming the past: the role of local Mencap Societies in the Development of Community Care in East Anglia 1946-1980, Milton Keynes: Open University.
Nickson, B. Never take no for an answer, in Rolph, S. Atkinson, D. Nind, M. and Welshman, J. Eds (2005) Witnesses to Change: Families, Learning Difficulties and History, Kidderminster: BILD pp. 77-86
Ryan, S. (2015) https://mydaftlife.wordpress.com [accessed 29/8/2015]
Save Autism Services in Haringey (SASH) (2015) http://saveautismservicesharingey.co.uk [accessed 29/8/2015]
Shennan, V. (1980) Our Concern: the story of the National Association for Mentally Handicapped Children and Adults London: the National Association for Mentally Handicapped Children and Adults.
Walmsley, J. (2014) Baseline Independent Evaluation of Changing Scenes unpublished – available from the author
Walmsley, J. (2015) Final Independent Evaluation of Changing Scenes unpublished – available from the author.
* The jury in the inquest to Connor Sparrowhawk’s death unanimously found that he had died as a result of drowning following a seizure in the bath, contributed to by neglect.
