Social inclusion and a full life is still a challenge
Sue Buckley
How do we help our children and adults to belong – to have friends,
relationships and to be fully part of the community?
Buckley SJ. Social inclusion and a full life is still a challenge. Down Syndrome News and Update. 2004;4(2);41-41.
doi:10.3104/practice.329
The theme of the first two feature articles in this issue is the challenge of
full social inclusion and full participation in life as a child and as an adult.
The first article focuses on sexuality and sex education, the
second on 'circles
of friends' in primary school but both are tackling the issue of how to enable
our children and young people to have full lives and to really feel that they
belong in the social settings they are in. We have made great strides in
including children in education, in adult living and in work – we no longer shut
folks away in institutions for the 'handicapped'. We are getting quite confident
in meeting educational and practical needs, therefore giving young people with
Down syndrome the skills they need to be as independent as possible in their
everyday lives at school, at home and at work. However, social inclusion is
still a challenge and many teenagers and adults are isolated– they do not have
many friends or leisure opportunities outside school or college or workplace.
Even in inclusive schools, children and teenagers with Down syndrome may not
have real friends – some have many friends and are fully included but some are
quite isolated, with teachers asking for advice on how to improve their social
inclusion.
Do not leave it to chance
Both parents and teachers need to acknowledge that social inclusion cannot be
left to chance. It usually needs to be thought about and explicitly planned for.
This is well illustrated in the 'circle of friends' article. Issues (problems)
started to arise quite quickly for a child with Down syndrome starting school in
reception class. She was small, pretty and had limited spoken language. The
other children wanted to 'mother' and 'smother' her – they did want to play with
her, she was socially included but their behaviour towards was inappropriate and
she started to show her displeasure in the only way she could. In many schools,
the situation would have deteriorated rapidly with her negative behaviour
(pushing, biting) seen as a 'behaviour problem' due to having Down syndrome and
she would have been on the way to exclusion. Fortunately, the teachers and
support team were more perceptive and realised that the other children did not
know how to play with her and she could not tell them how she felt.
Peers need support and information
The 'circle of friends' approach provided a chance to talk with the class about
disability and about how the particular child might feel. This enabled them to
change their behaviour and become real friends over several years – but the
support of staff through 'circles of friends' meeting continued to be sure that
they could all work together to ensure the child continued to be fully included.
In our experience, there is a wealth of goodwill among mainstream peers but they
are not always sure how to build effective relationships with a child with a
disability without adult support.
Teenage and adult relationships
Close friendships raise another set of issues where education and support are
equally important but this time it is education for the person with Down
syndrome. Both parents and teachers worry about the sexual development of
teenagers with Down syndrome; How will they cope? Will they behave
inappropriately? Can they manage close and sexual relationships? Both research
and personal experience shows that most young people with Down syndrome are
sensitive and competent when it comes to sexual matters. Readers may already
know that I have an adult daughter who has had a close, loving, physical, and
successful relationship with a partner who also happened to have Down
syndrome.[1]
Letting go, respect and trust
There are some fundamental issues at stake here and we need to challenge
ourselves whether parents or professionals – do we really accept the right of
the child or student with Down syndrome to be a fully whole person? Or, are we
actually thinking of them as always a child – never fully an adult? Our subtle
underlying assumptions will affect all our interactions and expectations for the
person at home and in the classroom.
Most adults with Down syndrome want a life of their own, privacy, independence,
interesting social lives, meaningful work, friends and sometimes partners. Most
can manage their lives as competently as the rest of us if treated like adults,
given respect, encouraged to make decisions and be in control of their lives,
with maybe a little more support in the background but do we not all depend on
support from friends and family into adult life?
1. Buckley, S. (2000). Living with Down Syndrome.
Portsmouth: Down Syndrome Education International. [Open
Access Full Text
]