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:

• To find out more about ibk or order a copy of the report,
  e-mail info@ibkinitiatives.com
  or visit the website at www.ibkinitiatives.com
• Institute for Leisure Amenities Management: www.ilam.co.uk

Contact the Author:

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