A DISABILITY campaigner has shared how society dehumanises her and her son.
Dr Lucy Burke told of how her son Danny was reduced to a “list of deficits” at the age of just three to secure support for an autism diagnosis.
In a speech to the Red University event in Cambridge on Saturday, she said that her heart sank when filling in a disability living allowance form for him.
“It required me to calculate every additional minute of time he took from me,” she said.
“His right to access support was compensation for every minute of time I had to spend being his mum. His condition … had to quantify how much his behaviour upset other people.”
There were no options that enable him to say it didn’t, or that it was due to other people.
“There are so many hoops, so many obstacles, so many evaluations and demands to lay yourself open to scrutiny, just to get the increasingly inadequate crumbs of support available,” Dr Burke, a lecturer at Manchester Metropolitan University, said.
She said that not speaking up on his behalf would “be to fail and further isolate” Danny, who is now in his 20s, after the painfully slow progress for disabled people’s rights has been “systematically undone” by the Con-Dem and subsequent Tory governments.
She cited mortality statistics for people with learning disabilities: their life expectancy is 63 — significantly lower than the general population’s average of 82.
Listeners gasped when she said the figure fell to just 34 years for ethnic minorities, just over half the age of their white counterparts.
“Structural injustice is a reality in this country, and brutal funding cuts have gone hand in hand with an ideological project that presents disabled people and informal carers, because of the collapse of the social care system, as work-shy, economically inactive societal burdens,” she said.
There are up to 10.6 million unpaid informal carers in Britain, estimated to contribute £162 billion to the economy every year, she said.
But they find themselves in an impossible situation due to being classed as economically inactive, so forced to seek work or lose benefits, while also “disregarded and unincorporated to political and economic thinking and planning.”
Dr Burke said this situation had a long “genderised and racialised” history, one which continues despite private care providers making “obscene” profits from the outsourcing of local authority adult social care.
