In the early days of austerity in the UK in 2013, when the country was on the brink of realising the destructive nature of the policies being introduced, I interviewed a young woman in Wales.
We spoke about the impact cuts were likely to have on her family. A young person with Down syndrome, she was worried about accessing services as money was being systematically drained from them. Her story held up a mirror to the complex, widespread and avoidable nature of the difficulties ahead.
Towards the end of the interview, she told me quietly: “I worry about what will happen.”
Those words have stayed with me. They summed up so much of what everyone I spoke to had told me as I researched my first book, Austerity Bites.
During that period of interviewing and research, it became increasingly clear that some groups, including people with learning disabilities, were being actively marginalised and made vulnerable by the state.
It is vital that, wherever and whenever possible, our collective voices are raised – not only to highlight where injustices are taking place but also to seek answers to a clear and urgent question: how do we fix them?
So, when I was approached to write a column for Community Living where I could explore how various dimensions of policy and culture shape the lives of people for the worse – and the better – I jumped at the opportunity.
For the past eight years, I’ve had a proverbial foot in two places, travelling between and writing about the UK and the US.
My last book, The Shame Game, for example, highlighted the blaming and shaming of people in poverty on both sides of the pond. They included those with disabilities, who were more likely to live on the breadline because the very systems that should shield them from penury exacerbated it.
The things I’m learning from this dual perspective are what I hope to bring to this column. The aim will be to focus on issues common to both countries that can, for example, create barriers where there should be opportunities or result in indignities where there should be dignity and agency.
The column will look at where the two countries experience similar problems as well as consider what lessons might be taken on board to improve lives and life chances.
The cultures, systems and language may differ – in the US, the term intellectual disabilities is more commonly used – but, when it comes to people’s fundamental rights and to equality with other groups, there are shared hurdles and common goals.
What is happening in the US that is pushing for progressive change which will better support people in work, employment, education, healthcare and communities, or in sport or other activities?
What developments can be observed across different learning disabilities? Where does the country fall down on policy? And what, if anything, might the UK take away from this?
Next issue: making progress on poor pay
Right now in the UK, people are worried about how they will make ends meet and how the shredding of the social safety net will further impact already-strained resources.
This is especially the case for those who require support and assistance.
Against a backdrop where disabled workers are being paid, on average, £3,731 (17.2%) a year less than those without disabilities and the British welfare system is one of the least generous in Europe, I find myself reminded of that statement from a decade ago: “I worry about what will happen.”
For this reason, in my next column, I will explore the issue of wages and employment. In the US, the persistence of a below minimum wage for people with learning disabilities has been a source of ongoing concern and controversy; on both sides of the Atlantic, wider disparities in pay are deep rooted.
However, they are not inevitable, and we will take a closer look at how progress on pay is being made in the US and ask what we can we learn from it.