Lessons of leisure

Recent research shows that many disabled young
people continue to experience exclusion from ordinary leisure
activities, says project worker Pippa Murray.

Talking with young disabled people about their
experience of inclusive leisure, leads to conversations about
everything – school, college, work, plans for the future, family,
friends, girlfriends and boyfriends, transport, money, holidays,
music, dancing, having fun. The thread linking leisure to all
aspects of their lives, we found in our recent research, was that
of relationship – opportunities for fun being dependent on having
friends. In this way the research participants described inclusive
leisure as a process through which we all belong, whatever setting
we happen to be in.

Having a solid sense of belonging within the
family was seen as a first, crucial step from which to engage with
a world in which young disabled people commonly face exclusion:
“Family is the core of life for everyone. It needs to be a priority
for those who do not know what it feels like to belong”, said Ben
Rose, 18 (all names in this article have been changed).

Many of the young disabled people taking part
in the study, particularly those with learning difficulties, spoke
about their family as their “best friends”, the people they most
liked to do things with. This stood in sharp contrast to others who
said, like the majority of teenagers, that they were “fed up” with
family and wanted to be with other young people, doing things that
young people do – discos, karaoke evenings and eating out being hot
favourites. The experience of not being able to easily access
ordinary teenage activities meant that young disabled people were
inevitably held in dependent relationships with their parents.

In an extreme, but by no means isolated,
example of an enforced relationship of dependency, Owen Denning,
20, told us how his mother was the only person who could
competently and confidently facilitate his communication. Not
surprisingly, as well as creating a barrier to making friends with
other young people who are keen to escape from parental
supervision, such vulnerability makes both Owen and his mother
extremely anxious about the future. While they have a close and
loving relationship, Owen desperately wants to be with other young
people.

During the course of the research, Owen, his
mother and I sat talking in a pub. After being there for about an
hour, the publican came and joined us. Ignoring both Owen’s mother
and myself, he started talking with Owen – they talked about
football, family, work and so on. Afterwards, Owen told me that it
was the first time in his life that he had had an ordinary,
friendly conversation with a stranger in this way.

During the course of the project, it was
common to hear professionals involved in providing leisure services
for young disabled people talk about the problem of parents. What
this generally meant was that parents were perceived as being
overprotective and unwilling to let go. Disabled young people able
to give their opinion of this, while agreeing that their parents
sometimes fussed too much, understood why this was the case. They
thought it was reasonable for their parents to worry -many of them
had had very unpleasant experiences – but were keen to work out
ways of being able to go out, to stay out late, and to take part in
ordinary teenage experiences. While such negotiations are all an
ordinary part of growing up, the provision of good quality,
appropriate, creative and flexible support would do much to
facilitate the changing relationship between disabled teenagers and
their parents. Amid the stories of overprotectiveness were accounts
from young disabled people illustrating the ordinary nature of
their relationships with their parents. Said Tim Richards, 18:
“Even though we thought that we’d done a pretty thorough job on the
cleaning, the parents still found time to follow round behind us
and find fault on their arrival for the return journey home. Oh
well, what can you do?”

Young disabled participants (and their
parents) were keen to have support allowing them to go out to their
chosen places. The present basis of family support, rooted within
child protection, does not easily allow young disabled people
requiring support to be present in their communities, participating
in ordinary activities. For example, the three hours a fortnight of
support-work time given to James Roebuck by his local social
services that enables him to go out in his community is under
threat of withdrawal because the family are seen to be coping.
Disappointingly, while few of the participants had heard of direct
payments as a means of accessing support; those who did know of the
payments had been told by their councils that although the scheme
was up and running for people with physical impairments there was
nothing available for people with learning difficulties or
communication impairments or both.

As school is the main opportunity for children
and young people to make friends and learn about relationships
outside the family, it is not surprising that young disabled people
made a link between education and leisure. The general consensus
was that within mainstream schools, disabled young people are
treated differently to non-disabled pupils, while going to a
segregated school means that it is “harder being out in the real
world”.

Participants attending mainstream schools
reported being constantly left out, made to feel different,
socially isolated and sometimes physically bullied. Sally Garner
told of the time when the main topic of playground conversation was
about the book Harry Potter. Unable to read the book as she did not
have access to a large print copy, she was excluded from all such
conversations and therefore left out of the general excitement. By
the time she got a copy several months later, Harry Potter was no
longer the topic of conversation.

Meanwhile, in the classroom, Mita Botham was
unable to participate in the coursework as she did not have the
appropriate support. In a fast moving world, being unable to “join
in” with others in this way, perhaps several times each day, can
easily lead to being lonely in school and having no friends to
spend time with outside of school.

Young disabled participants attending
segregated schools or resourced units also experienced social
isolation out of school because of difficulties they had meeting up
with their friends – they all lived some distance from each other
and were unable to use public transport without support.

Such isolation means that there is no one
apart from family with whom to go to the swimming pool, go into
town, the park, the bowling alley and so on. In this way young
disabled people are effectively excluded from large parts of the
ordinary experience of growing up.

On occasions that the participants did manage
to take part in everyday activities they described how there was
always a background anxiety as to how they might be received as
experience had taught them that they might be made to feel
unwelcome. For example, Victoria Popplewell described how going
shopping often became an unhappy experience as shop assistants
expressed impatience with her repeated requests to read out the
price of different items of clothing (the print being too small for
her to see).

David Marks told us how his trip into town to
meet up with friends failed when the bus driver would not give him
enough time to get onto the bus. Siobhan Taylor spoke of the
occasion when she and her friend (both with visual impairments)
were abruptly dropped off on a busy dual carriageway, as the taxi
driver was unable to find the address they had requested.

Young disabled people taking part in the
research were pleased to have the opportunity to tell their
stories, as they wanted people to know about the daily
discrimination they face. They were also full of optimism and
energy, and had many ideas for ways of facilitating change – from
enforcing the Disability Discrimination Act 1995 to being treated
with respect and common courtesy. In the true spirit of inclusion,
young disabled people are inviting all of us to engage with them in
this process of change.  

Pippa Murray is project worker, Parents With
Attitude, which works with parents of disabled children.

References

¹ Pippa Murray, Hello!
Are You Listening? Disabled Teenagers’ Experience of Access to
Inclusive Leisure, York Publishing Services, 2002, Available
from 01904 43033. The research involved 100 young people from four
projects providing a variety of leisure activities.