by Jenny Morris
Disabled people’s aspirations for independent living emerged out of the vision expressed by people who had been written off as ‘socially dead’. The hopes and dreams expressed and achieved by Paul Hunt, John Evans, Liz Briggs, Ken and Maggie Davis – to name only a few – showed us better ways for people to live their lives. All the progress made during the 1980s and 1990s built on the struggles of those who fought for housing and support and to live independent lives.
Those struggles saw a redefining of what it is to be ‘independent’. Simon Brisenden wrote in 1989: “Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it”. People with impairments and/or long-term ill health have additional support needs which must be met if we are to experience a level playing field in terms of access to all the things that make up a reasonable quality of life.
The idea of a level playing field is widely supported and applied in many situations. For the last forty years it’s been embedded in one part of our social security system – made concrete by the payment of first Mobility Allowance, then Disability Living Allowance (now replaced by Personal Independence Payment), intended to help towards the additional costs of daily living incurred by disabled people. While we face assaults on the progress achieved over the last forty years, those same achievements show us what is needed to build a true level playing field.
This is not a minority issue – most families will be affected by impairment and/or long-term ill health at some point in their life cycle. Far from being a drain on our economy, resources spent on independent living are not only important economic stimulators but also an investment in the potential of individuals who need additional support. Such an investment also helps create a society which rejects the idea that to experience the bad luck of ill health or impairment means to lose the opportunity to live a good quality of life.
We need a new approach to funding and delivering support. We need a system which funds the additional costs that disabled people have – of all ages, and across the whole range of impairments and long-term health conditions. It needs to be a nationally consistent system, with no element of post-code lottery, and to be based on universalist principles, like child benefit and DLA/PIP. Unlike means-testing this is the most efficient way of delivering support, with lower administration costs and no disincentive to employment, or to save for future needs.
Most importantly, we need a new approach which is designed by disabled people ourselves, building on the experiences of those who were so successful in leaving behind ‘social death’ and achieving their hopes and dreams of an ‘ordinary life’.
About the author
Jenny Morris previously worked on seminal disability policy, such as ‘Improving the Life Chances of Disabled People‘ and the subsequent ‘Independent Living Strategy.’ Now retired she uses her blog to try and link what we’ve learnt from the past with what we need to do for the future