Today the Child Poverty Action group (CPAG) launched its report: “It shouldn’t be this hard’: children, poverty and disability” at the Potters Park Event Centre in Balmoral (overview of the report here). Speakers expressed their frustrations, sense of despair, and outrage at the findings of the report. Above all they highlighted the humanity, and individual value, of disabled children with disabilities, as well as expressing the powerlessness of the parents and others working in their interest these children.
The main findings are a lack of comprehensive and useful data; that children with disabilities were more likely to live in poverty than any other children; and that there has been a decrease in parents getting the Child Disability Allowance, while the number of children with disabilities has increased.
The speakers at the launch stressed that it was a social justice and civil and human rights issue; that it was a daily struggle for the parents of children’s with disability, and that such people are highly marginalised, invisible and relatively powerless in our society. Colleen Brown expressed her frustration that no-one in authority seems to care or take responsibility:
We need a minister with guts. Or maybe a Prime Minister with guts.
Brown’s question to the audience as to whether there was anyone present from the Minister’s office, was met with silence. Green MP’s Mojo Mathers and Jan Logie were present at the launch. Alan Johnson talked about how state interests are not the same as the public interest. In many cases, as with disabilities, the government see themselves as protecting the state against any claims made by parents.
Brown’s question to the audience as to whether there was anyone present from the Minister’s office, was met with silence. Green MP’s Mojo Mathers and Jan Logie were present at the launch.
Allan Johnson and Colleen Brown stressed that people with disabilities are more than their deficits. Brown talked about her 18 yearl old son Travis who, while still exhibiting some challenging behaviour, is now living an independent life, away from his parents’ home, sharing a flat with others. She said that “the policy and disability game is played using the deficit model.”
Like any other human being, disabled people have a range of other qualities and abilities: they can be funny, caring, helpful, creative and successful in some areas of their lives. However, as Johnson staid, they often do not measure up to our celebrity culture’s standards of attractiveness and/or socially approved kinds of behaviour. Yet, as Johnson also pointed out, children with disabilities can provide joy to their parents, and they can provide new insights: they can cause us to reflect on things like what counts as success, and into character.
Public health service paediatrician, Louise Pourteous talked about two 19 year olds she was working with this morning. One was caught up with CYFS and another agency debating which of them were responsible for their respite funding. As he gets older, he is becoming more violent, but there is a long waiting list for the kind of support he needs. Porteous pointed out how some of the necessary diagnoses and assessments of children with disabilities get no funding. They are mostly funded by parents.
Brown talked passionately about the lack of interest in the wider society about the struggles of families with children who have disabilities. She said, “we are not the good news story”.
She quoted parent Sophie of South Auckland, who had said that it is “hard to be the parent of a child that no-one [else] wants to have.” She said the mainstream media only pay attention in moments of crisis, as for example when a parent kills a child. But they quickly lose interest and move on to other matters: they “are the forgotten people“.
This certainly seemed to be indicated by the limited media presence at the launch. The RNZ reporter was the most obvious, recording the speeches, and conducting an interview afterwards. There has been some coverage of the report in the mainstream media, but it does not generate the level of interest generated by many other issues, for which there are more dramatic headlines an intensive coverage.