Friday, December 2, 2011

Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011.

Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise
  • disabled children sometimes sit outside 'mainstream' children's policy and 'mainstream' services including education, health, leisure and social care
  • families with disabled children are often isolated with little support in their communities
  • despite changes in legislation, disabled children are still excluded from a range of leisure activities. The biggest barrier to disabled children's access to leisure was the attitudes of other people. Physical and attitudinal barriers mean that many disabled children had no choice but to attend segregated leisure activities.
  • disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death.
  • parents come under huge pressure to make their disabled children 'normal.' When families differ from the 'norm' this leads to exclusion -- children are excluded from friends, schools and leisure opportunities and parents are excluded from friendships and work
  • disabled children have often been excluded from arts for its own sake (their creativity is often thought about in terms of therapy)
  • parents are often asked to talk negatively about their disabled children in order to access services and support, whether in education, health, leisure or social care/benefits. Parents are asked repeatedly to talk about what their children can't do, as opposed to the support they require. Parents say this has a negative impact on their relationship with their child.
  • disabled children often have to deal with negative perceptions of their bodies, including being stared at or questioned about their bodies. Disabled children's bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies are normal
  • when disabled children are viewed as 'vulnerable,' bullying is often accepted as inevitable. Often the bullying goes unnoticed by the adults who are sometimes also the perpetrators.


This is just so sad. Nearly overwhelmingly so.

I wonder if we would find very similar results for children in North America (and Switzerland Tekeal!). I thought we had made strides with inclusion of children in sports and recreation. But when I think about it, much of what I read in this paper rings true with our experience. I was surprised to see the experience of the pressure to 'make' your child normal documented. I don't recall seeing that in other research and think it's a real bind for parents.