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Whoever said your school years are the best of your life, probably wasn’t thinking of a disabled childhood – certainly not the one described by a former resident of a children’s home.
“I always felt I was being shunted around to suit other people because I didn’t fit in with them. It was me that had to move, not them that had to change the way they did things.”
“Stephen” is quoted in a book by academic Dr Jenny Morris, herself a wheelchair user and author of several books on disability rights. Her research suggests Stephen’s negative experiences are shared by many other disabled children. Sadly, his experience is not an isolated one.
In contrast to
non-disabled
children, disabled children are more likely to be fostered than
adopted. They
are more likely to be in residential care and most worryingly of all,
American
research has shown that disabled children in residential care are more
likely
to be abused while there. It’s hard to avoid the conclusion that disabled children are the poor relations in the care system. But why is this? Dr Jenny Morris’s study “Still Missing” was published by the Who Cares Trust in 1998. In looking at the whole area of disabled children in care, she found that care services failed to consult disabled children, like Stephen, denying them the chance to lead more normal lives.
The 1998 study also found that many young people lacked access to a communication system that suited their needs. They had no routine access either to people who understood the ways that they communicated, or to independent facilitators. As she put it:
"The painful and sometimes downright awful experiences that young disabled people described confirm that the basic right of children to communicate is being violated in a routine if sometimes unintended fashion. All too often, what happened to them had been determined by other people's reactions to their impairments, rather than their actual needs."
Since that study was published, there has been at least one important piece of legislation promoting the rights of disabled children – the 2002 Special Educational Needs and Disability Act, which strengthens the rights of disabled children to a place in a mainstream school. Inclusion is now the buzz word - in
theory at least. It’s
written
about a great deal, along with the rights of disabled people and the
social
model of disability. But is there any real change in the system? John Townend has been a manager of Barnardo’s Grove Road project in Harrogate since 1987. Inclusion is central to the work of the project. Its main aim is to support disabled children and young adults so that they have the same chances as others within their local community. The project supports disabled children allowing them to join in ordinary activities or spend time with approved carers to make friends and enjoy an occasional sleepover, in the same way that other children do. John Townend is aware that meeting the needs of disabled children is a matter of real communication.
“One of the questions we always ask our staff is ‘How would you know what a disabled child would like to do?’ And the answer is of course that you ask them. It’s not rocket science.
If a child can say ‘yes’ or ‘no’ then we should be able to ask ‘Do you want rice or chips or do you want to go to play scheme or stay at home, and what do you want to do when you’ve got there?’ It’s a question of finding the time and having the time to find out what kids want to do.”
He believes that as well as effective communication, inclusion is vitally important for disabled children.
“Inclusion is where you alter the DNA of the host organisation so that all the activities are accessible to all children. Inclusivity means planning things from the ground upward so that they are accessible to all children or finding a range of activities that are accessible to all. It breaks down the barriers.
If you’re not careful non-disabled children never meet a disabled child and disabled children get demonised. Then people think that they are difficult or people feel sorry for them and we’re into a tragedy model of disability. If non-disabled children learn that you can have fun with disabled children then it’s OK.”
One of the main groups of disabled children needing to assert their rights and communicate their wishes, is learning disabled children whose rights are often ignored. Late last year Mencap developed a multi-media pack with help from the Community Fund to help disabled children complain about the services they use.
The Listen Up pack identifies some of the areas where learning disabled children may be overlooked. Children with severe learning disabilities are often the most disadvantaged because there are so many barriers to staff listening and acting on their concerns. They often use non-speech forms of communication, such as turning away from an activity or subtle signs such as facial expressions or withdrawing eye contact. This means that staff may not have the training or tools to help them detect what the child is trying to communicate.
It’s an issue for all disabled children, not just learning disabled children. As John Townend points out, “Disability is not an illness. A disabled child isn’t sick unless they have measles, mumps or whooping cough.” Sadly until the world sees the child rather than the disability – to paraphrase the Disability Rights Commission’s advertising campaign - and learns how to communicate and listen to them, then equal rights to a happy and fulfilling childhood will remain as far off as Stephen’s description of his childhood - “being shunted around to suit other people”.
OUCH