The legislative framework for social care services in England has remained unchanged for the past 40 years. Back in 2003, Andrew Cozens, then president of the Association of Directors of Social Services, spoke of “the long shadow of the Poor Law that has remained over social care to its detriment – that long shadow brings with it the armoury of measures we are still familiar with: rationing, eligibility criteria and means testing to sort out the deserving from the undeserving.” The language enshrined in current acts describes disability in terms that are uncomfortable in today’s world.
In the summer of 1999, I was sitting on Whitby beach with my husband, Andrew, and our two-year-old toddler, Tom. There was a strong breeze that kept blowing sand into our ice creams, but the sky was bright blue, and the sun danced on the surface of the sea.
I didn’t know that the next day would bring a tsunami with it, one that would destroy the life I knew and leave me to rebuild a completely different one. I was only 24 weeks pregnant and my waters broke. Three days later, James was born weighing just 1lb 12oz, with extensive brain damage.