In 2002 a Joseph Rowntree Foundation report found a gap between the inclusive intent of initiatives, such as Valuing People and Quality Protects, and the continuing exclusion of young disabled people from leisure services.(1)
Two years later a JRF report, Making Connections, found that the gap still existed.(2) Admittedly, things were moving in the right direction, but advances in policy were leaving improvements in practice trailing.
Making Connections charts a journey whose end is mutually beneficial dialogue between young disabled people and leisure service providers. Along the way, a wealth of anecdotal evidence describes the daily experiences and observations of these young people. Sometimes their stories are painful, their observations angry. But pain and anger are not the dominant notes. Continuing exclusion from activities which their non-disabled peers take for granted leaves a legacy not of bitterness, but of courage and optimism - and levels of insight unusual at any age. After speaking of the way time often presents a barrier to her inclusion (because everyday tasks take longer) Katherine, 16, said:
"Most people in their lives miss what is growing around them. We who can't be speedy have the opportunity to be aware of the insignificant and make it important."
The desire of young disabled people to live ordinary lives gives the context in which the policy-practice gap is examined. As regards causes, although it accepts failures to "walk the talk" as common to many areas of life, Making Connections argues that here the mismatch reflects something specific to disability. Policy and practice are at odds because each draws on contrasting models: one social, the other medical.
The medical model of disability, seeing impairment as extraordinary and disabled people as "the problem", regards individuals as needing (but often failing) to fit in, rather than society needing to change.
For centuries it has justified the segregation of disabled people from the community, even from family. But it is an implicit model, rarely articulated by its proponents, professional or lay, who are usually unaware of adopting any theoretical stance. Rather, the medical model seems the natural way to view things. And this transparent quality renders invisible a crucial distinction: between the natural fact of impairment (the body not working well) and the social fact of disablement (as when wheelchair users are deprived of travelling on trains or tubes because planners have not included lifts in stations).
In contrast, the social model is explicit: a direct challenge to the dominance of the medical model. Disentangling impairment from disablement, it holds to account a disabling world for causing, in ways gross and subtle, unnecessary hardship for those it shuts out. Lloyd, 17, who may never have heard of a social model shows a natural grasp of its core theme:
"Sometimes it's my medical condition that stops me being able to go out, like when I don't feel well or my body stiffens up too much to sit still; other times it's because there are steps into places or I have no one to take me or no one to go with..."
Broadly speaking, those charged with making policy hold to the social model, those with service provision to the medical. With policy and provision led by models so sharply divergent, young disabled people find themselves hearing of new rights to inclusion in their communities, while remaining dependent on services based on that older view of them being afflicted with an unfortunate problem. Sean, 21, said:
"I am not able to live without a great deal of supportÉI am aware I am a curiosity for many people but I believe I should be given the same opportunities as othersÉI also think it is important people realise that disabled people have something to contribute to their community, and it is time our abilities are appreciated for what they are. We wearily allow ourselves to be herded into institutions by people who have no idea of our misery."
There is a mismatch between leisure policy and practice. It is caused by a clash of underlying philosophies and its effect is to compromise and delay initiatives to allow young disabled people to lead ordinary lives. From this assessment of fact, cause and effect, Making Connections sets out its guidelines for developing inclusive leisure.
So, first acknowledge the deep-rooted fear of impairment. In a disabling world it is to be expected. Only by acknowledging the reality as opposed to what we would like it to be can we move on to something better. As one disabled adult said:
"I can handle people's fear of impairment but they can't. They won't admit to that fear, inevitable in a disabling world, because they think it betrays a personal defect in themÉnothing about this is personal."
Nor should we allow a related fear of "saying the wrong thing" prevent us finding out. At a large meeting at Dudley in the West Midlands, where for the first time leisure professionals heard first hand the views of young disabled people, one service provider cared more about the truth than appearing politically correct, so was able to ask how he could consult other disabled young people who cannot communicate easily.
Second, just ask. Since the views of young people in general, and disabled young people in particular, have rarely been sought, sincerely asking their opinions not only advances the aim of inclusion but is inclusive: the path and goal are one. And in answer to the question just posed by that service provider, Making Connections shows many ways of consulting young people, including those who do not use language.
Third, as situations of exclusion arise, reflect on the
difference between natural limitations imposed by impairment and
artificial ones imposed by society. Encourage colleagues to do the
same. It is not necessary to spout "the social model of
disability". But getting others - not only professionals but the
wider public too - to start thinking about that vital distinction
is the beginning of inclusion.
Pippa Murray is director of ibk initiatives, a research,
consultancy and training agency which promotes the inclusion of
disabled young people and their families.
Abstract:
Leisure provision for disabled young people is not keeping pace with the inclusive language of government policy. This article looks at how this is denying individuals the basic human right to lead as ordinary a life as the circumstances of impairment permit. This is caused by models of disability which fail to differentiate impairment and disability.
References:
Further Reading:
Further Information:
Contact the Author:
Telephone 0114 235 9276 or e-mail: pippa@ibkinitiatives.com
Details of government consultations
21 August 2008
Private Member Bills
25 July 2008
Government Legislation
25 July 2008
