Exclusion zone

    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:

    1. P Murray, Hello! Are you Listening? Disabled Teenagers’
      Experience of Access to Mainstream Leisure, Joseph Rowntree
      Foundation, 2002
    2. P Murray, Making Connections: Developing Inclusive Leisure in
      Policy and Practice, Joseph Rowntree Foundation, 2004

    Further Reading:

    • M Mason, Incurably Human, Working Press, 2000
    • J Swain, S French, and C Cameron, Controversial Issues in a
      Disabling Society, Open University Press, 2003
    •  C Tregaskis, Constructions of Disability: Researching the
      Interface between Disabled and Non-disabled  People, Routledge,
      2004
    • Contact a Family factsheet: Holidays, Play and Leisure www.cafamily.org.uk/holidays.html

    Further Information:

    Contact the Author:

    Telephone 0114 235 9276 or e-mail: pippa@ibkinitiatives.com

     

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