Two weeks ago I attended the Action Duchenne International Research Conference at the Hilton Metropole in Edgware Road. This is a major event in the Duchenne Muscular Dystrophy (DMD) community’s calendar where over 450 delegates, including doctors, scientists, health professionals, biopharmas, people with DMD and their families meet together to share updates on current research and clinical care.
DMD is a rare muscle wasting impairment that affects around 1 in 3,500 male births. It predominantly affects boys as it is on the X chromosome, and girls usually have another X to compensate. Boys with DMD lose the ability to walk on average by the age of 12 years, and historically have not lived past the age of 19 years. However, more recently, with the help of interventions such as night ventilation and cardiac management they are living into their late twenties and thirties, and some into their forties. Although still life-limiting, DMD is no longer a childhood impairment, and those who are diagnosed with it expect to live into adulthood.
This year’s annual Action Duchenne Conference was particularly exciting because as well as the research sessions led by scientists and clinicians, a parallel set of workshops focusing on quality of life issues was run by DMD Pathfinders. DMD Pathfinders is the first organisation led by adults with DMD for adults with DMD and is a reflection of the strides in medical care for those living with this impairment. Key to many of their sessions was how to get the best life possible whilst living with a complex and severe life-limiting impairment. All of DMD Pathfinders are wheelchair users, and most have very little movement in their bodies apart from a hand or finger. Many use full time ventilation and some have PEG bags which mean they do not eat regular food but are dependent on a specially prepared liquid diet.
A major aim of the new Special Educational Needs and Disability legislation in the Children and Families Act 2014 is to improve outcomes for all disabled young people as they leave full time education. This means thinking about a career you would like to follow, where you would like to live, developing your friendship groups and local networks of support and being in control of your healthcare. This is particularly pertinent for young men with DMD, who for the first time are now living into adulthood and are able to make decisions about these aspects of their lives. An Education Health and Care Plan can now last until the age of 25 years if you stay in education, and hopefully many involved in DMDPathfinders will be able to take advantage of the raised aspirations that are key to the new legislation in order to get the sort of life they want.
But the new legislation will only be as good as the resources that support it. Although very early days, many families and young people are already reporting that the person-centred philosophy is a big improvement on the old system, but lack of budgets in Local Authorities mean that they are still having fight for funds to support the outcomes they have identified as important in their lives. Similarly, this month a UN Enquiry reported that Austerity policies introduced into welfare and social care by the UK government since 2010 amount to “systematic violations” of the rights of disabled people.
The report is withering in its attack on the Government, testifying that cuts in PIP and Universal Credit, and the imposition of Bedroom Tax have prevented many disabled people from living independently and forcing many into residential care. Punitive tests for PIP have meant many disabled people have been forced into jobs that have been inappropriate or dangerous, and suicide rates have risen.
The report also noted that a climate where disabled people have been portrayed as benefit scroungers, “lazy and putting a burden on taxpayers” has been allowed (and perhaps) encouraged (see this Guardian Report: https://www.theguardian.com/business/2016/nov/07/uk-austerity-policies-amount-to-violations-of-disabled-peoples-rights).
The silver lining in this depressing report for me is that it was triggered by campaigners including a group of disabled people who formed around opposing these austerity measures called ‘Disabled People Against the Cuts’ (http://dpac.uk.net/). These campaigners made a formal complaint to the UN in 2012 about violations of disabled people’s rights which resulted in last week’s report. You may also have seen members of DPAC earlier this year storming Parliament in wheelchairs, to oppose the brutal cuts on Employment Support Allowance that Ian Duncan Smith, the then Minister for Work and Pensions, was supporting that would have had a massive impact on the lives of many disabled people. Their action not only shined a light on the plans to make further cuts to disabled people’s support packages, but it forced Duncan-Smith to resign.
In his polemic ‘Changing the Social Relations of Research Production’, Michael Oliver speaks about how those with wealth are able to avoid the ‘scrutiny’ of public view, whereas many disabled people and their families do not enjoy this luxury (Oliver 1992). We live in a society where paying no taxes is celebrated either on an individual or a corporation level, and where the majority of the British Cabinet are millionaires, many benefiting from offshore accounts and tax cuts. The Social Model of Disability argues that it is society that disables people and not their impairments through denying them access to both economic and emotional well-being. This oppression can become internalized and negatively impact on the goals and aspirations of disabled people (Campbell 2009).
For those with DMD and other complex disabilities to reach their dreams it is essential they have the support to do so. This means having a government that will invest in people so they can thrive and succeed – providing assistance for opportunities such as work experience and supported internships; transport so that they are not trapped in their homes; adapted houses and trained care staff so they are not institutionalized.
And it means supporting groups like DPAC when they are challenging the shocking discrimination that has become normalized and acceptable under the current climate of austerity.
Campbell, F.K., (2009) Contours of ableism. Basingstoke: Palgrave Macmillan.
Disabled People Against the Cuts http://dpac.uk.net/
Oliver, M., (1992) Changing the Social Relations of Research Production (1992) Disability, Handicap and Society Vol 7 No 2 (1992)