Dea Birkett reports that a poll of families with disabled children revealed that the one thing that would change their lives most would be “not to have to fight for support”. Her notion that disabled people and their families live in a “parallel universe” is so apt – but the lived experience for most of us is of having to put in “double time” to face the exhausting demands of this constant struggle on top of the ordinary demands of everyday life. We have to live two lives simultaneously with only one set of time, energy and money.
Most people could not begin to imagine the extent of our exclusions and lack of choices. Birkett quotes the mother of a disabled child saying “life is relentless. It’s physically and mentally punishing. But the biggest frustration is the constant battle that you have with social services, health and education to get any kind of help and support”. On top of all this, we face toxic comments about our differences, such as those expressed about Cerrie Burnell, the children’s TV presenter with only one hand: “One father said he would ban his daughter from watching the channel because Burnell would give [his daughter] nightmares. Another said it would scare the kids”
Every time we need anything, we have to wait months for a new occupational therapist (OT) to be assigned for a new assessment. We are now into our third month of waiting for a new pair of shoes. Those of us lucky enough to be able to afford a holiday face unbelievable hurdles – such as, in our case, being excluded from planes because the Disability Discrimination Act does not cover air travel, so airlines can refuse a service to people like my husband, a wheelchair user who needs extra legroom because his knees don’t bend. Years of appealing to politicians has not changed this. We face selfish non-disabled people using our parking bays. As a carer, I have had to reduce my paid working hours to cope with all these extra demands on my time.