Sense – part of a social revolution*
Sense1 is a unique organisation. It serves people with some of the most challenging disabilities, has always worked closely with families, and has its own particular history and culture, writes Colin Anderson.
But it has also been shaped by, and reflected, broader changes and developments in society – such as changing attitudes towards disability and the growth of the voluntary sector.
When we still hear, in 2015, about families struggling to get the right support for their child, or an older person not coping, it can sometimes feel like nothing has changed. But if we look back it is amazing how far society has come in the last 150 years.
The voluntary sector has it roots in the 19th century. The NSPCC2 for example, was set up in 1884 and its approach then is still highly relevant today. It identified a social problem (in this case, child abuse), looked for viable ways to help the victims, then campaigned for the government to adopt these methods – because only the state had the resources to deal with this on a national scale.
In the twentieth century this state social provision and spending gradually grew in areas such as housing, health and education. At the same time, a succession of new voluntary organisations grew up, especially in the 50s and 60s, often started by women who responded to gaps in provision.
Sense – or the Rubella group as it was first known – was one of these. It was founded in 1955 by Peggy Freeman and Margaret Brock as a self-help and support group for families whose children who had been born deafblind as a result of their mothers catching rubella in pregnancy.
Attitudes to disability had also gradually been changing over the century, partly as result of men returning from the first and second world wars with physical disabilities and mental trauma. Some of these men were in the vanguard of campaigning against poor access and inequality and a ‘social’ rather than a ‘medical’ model of disability emerged. Eventually – in 1995, the Disability Discrimination Act3 was passed.
Those early Sense parents also had a battle on their hands. There was almost no help for them and little understanding of the impact of deafblindness. One of their first priorities was to share information about their children’s needs so they set up a newsletter, still going strong as Talking Sense.
They also began campaigning, establishing allies, holding conferences, offering training and winning over hearts and minds. In the fifties their children had been described as `ineducable’ but very gradually they won the argument. The 1970 Education Act – which paved the way for special units to be set up – was the first breakthrough. The 1981 Education Act was another important step as it introduced the concept of disabled children having ‘special needs’ and the right to an assessment and statement.
By this time, those original children from the Rubella Group were growing up and, just like today, their parents were concerned about what would happen to them when they left school and where they could live in the future. Thanks to a successful appeal by the Magpie children’s programme4 in 1974 our first residential and education centre was opened in 1980 for 12 deafblind adults at Market Deeping near Peterborough.
This reflected a sea change in society. For many years, people with all sorts of mental, physical and learning disabilities had been placed outside society – in large, bleak often Victorian institutions. One young deafblind man that Sense now supports for example, was kept sedated and tied to a chair because the staff didn’t know how to cope with him.
As public opinion increasingly turned against these long-stay institutions the policy of community care was introduced and Sense responded. Our first group home in Market Deeping was followed by others in Edgbaston and by the end of 1999, Sense had 73 group homes throughout the UK, providing supported housing and further education.
Another significant change was that fewer and fewer children were being born with rubella damage as result of immunisation. However, developments in medical science meant that increasing numbers of children were surviving difficult births, syndromes and medical conditions so that today Sense supports many children who are multi-sensory impaired, often with considerable physical and learning disabilities as well.
In fact, Sense has broadened its scope and activities in numerous ways since we began. In 1983 we started working with people with acquired deafblindness, including those with Usher syndrome and – as people are now living longer – we have developed creative ways to help older people with dual sensory impairments to keep their independence and stay in touch.
We’ve also greatly extended our geographical range: Sense Scotland5 launched in 1985, Sense Northern Ireland6 in 1990, and Sense Cymru7 (Sense Wales) in 1993. Sense International8 began its work in 1993 and now helps to develop services for deafblind people in Bangladesh, India, Kenya, Peru, Romania, Tanzania and Uganda.
Today, Sense’s activities are still enormously affected by broader forces and changes in society. New technology for example, is offering unforeseen opportunities for people to communicate and participate. And the new social care legislation has the potential – if properly funded – to improve the co-ordination of care for families, which has been a perennial problem.
Whatever happens in the next 60 years however, it is fairly safe to say that our world – and Sense’s – will have developed in all sorts of ways that we would never have expected!
*This article was originally published in the Summer 2015 Edition of Talking Sense Magazine, the magazine of Sense.
1 www.sense.org.uk. Sense is a large corporate member of DbI.
2 National Society for the Prevention of Cruelty to Children (www.nspcc.org.uk)
5 www.sensescotland.org.uk. Sense Scotland is a large corporate member of DbI.
8 www.senseinternational.org.uk. Sense International is a small corporate member of DbI.
Nordic Network on Cognition