Stuart Bracking on the reasons why people with severe disabilities must continue to be supported in independent living.
Independent Living Fund users are severely disabled people who often, along with their immediate kin, lead difficult and emotionally punishing lives.
While this partly arises from the reality of their impairments, social factors such as exclusion, discrimination and prejudice are equally as important. The adoption of social model definitions of impairment and disability in the Improving the Life Chances of Disabled People strategy acknowledged the importance at a government level of the need to challenge this unequal treatment, and not just rely on the blunt tool of weak anti-discrimination legislation.
Independent Living Fund users are also some of the most inspirational members of our society.
Despite their impairments, many have forged social roles as parents, workers, activists, volunteers, artists, care-givers, writers, thinkers, travellers and so on that would not have been thought possible even a generation ago.
Thousands have for twenty years organised and run complex care packages far cheaper than any private company or public service can manage. At the level of protection, the Independent Living Fund has helped to keep thousands of people with severe learning difficulties together with their families or supported them to live in the community.
The Fund also helps many with difficult progressive impairments to continue to live in the community over the long-term when their lives would otherwise be shortened by the lower standards of care found in nursing homes. Only those of us whose impairments mean we are constantly on a knife edge between life and death can truly understand this point.
Severely disabled people need a gentle, compassionate and humane approach from the public bodies tasked with meeting their needs and safeguarding them. This is the opposite to what we have witnessed from the Department for Work and Pensions (DWP) before, during and after their ‘consultation’ on the future of the Fund.
While the number of Independent Living Fund users is small relative to the general population, what happens to them matters. A failure to provide for their needs can result in significant levels of discomfort, pain and emotional distress.
Also, anyone of Britain’s sixty million citizens can become severely disabled at any point in their lives. A slip, accident, virus or negligence by a stranger can result in a level of impairment that requires support from the state that only multi-millionaires could otherwise afford to meet.
Independent Living Fund users deserve an opportunity to engage in an upfront debate about their future and that of other severely disabled people before far reaching political decisions are taken and enacted. We do not deserve the contempt shown towards us by the DWP and their brothers-in-arms at the Local Government Association and the Association of Directors of Adult Social Services. We are human beings that deserve equity with our disabled and non-disabled peers and the social opportunities that any average person takes for granted is their right.
We live in a country that for all its faults has an amazing national health service that keeps many of us alive for decades longer than would have been the case two generations ago, and a society accessible enough to allow most of us to live socially active lives that give us the emotional reserves to manage the rigours of our impairments and the challenges arising from the social obstacles we face. Respect us and learn from our experience, approach and successes to prepare our society for the demographic challenges ahead. To do otherwise will not only be unjust but socially irresponsible.
