I was very lucky to spend last weekend at The Calvert Trust in Exmoor, with 14 other families who, like me, have a child with the genetic muscle wasting impairment, Duchenne Muscular Dystrophy (DMD). If you don’t know, The Calvert Trust is an amazing organization that runs 3 outdoor activity centres in the Lake District, Northumberland and Exmoor where disabled children are able to take part in activities alongside non-disabled family and friends, such as abseiling, canoeing and climbing.
The best part about the weekend was that it suddenly felt like the wheelchair had disappeared. There was a functioning lift to reach the upstairs rooms, and doors opened automatically when you approached them. The swimming pool had a hoist; climbing harnesses and zip wires were adapted for people who couldn’t weight-bear; and even the jetty where we climbed into our canoes had a simple outdoor hoist. Hardly rocket science or at huge expense, despite claims to the opposite from many shops, restaurants and other public venues who often seem to view wheelchair access as complete anathema.
Before the 1970s, disability was mainly viewed from a bio-medical perspective. This means it was seen as a personal tragedy, the fault of the disabled person who was viewed as a victim suffering from his/her impairments, not capable of directing his/her own life. In the 1970s, a group of British disabled campaigners and academics who were fed up with having decisions made by other people about how they lived their lives, developed what is known as the ‘Social Model of Disability’ (UPIAS 1976). The social model defines disability as
‘…the disadvantage or restriction of activity caused by a contemporary social organisation which takes now or little account of people who have impairments and thus excludes them from mainstream of social activities'( UPIAS 1976: 14)
In other words, according to the social model, there is a difference between an impairment that you are born with, and disability. The latter is caused by a society that does not offer accessible buildings, trained staff, assistive technology and other support systems and adjustments that could bring equality of opportunity for everyone. These ideas have been key to achieving better legislation such as the Equality Act and form much of the theoretical underpinnings of the Special Needs Code of Practice (DFE & DoH 2015) which places responsibility on schools and local authorities to meet the needs of disabled young people, rather than look for ways of ‘fixing’ these young people.
Of course all the ramps, hoists and support systems will not remove the difficulties that are caused from having a degenerative muscle wasting impairment like DMD. Carol Thomas has argued that even though people are disabled by society, they can have impairment effects that impact on day to day living and are caused by a particular medical impairment. In the case of DMD, a shortened life expectancy, paralysis, cardiac and breathing complications as well as a range of learning and behaviour challenges could all be viewed as impairment effects. Jon Hastie, an adult with DMD, has recently written that DMD is not something to be celebrated as it robs people of their ability to live life to the full and has a devastating impact on their families and friends (read Jon’s blog here).
Amazing work is being accomplished by tenacious and determined parent and user-led organisations across the world, who are campaigning and fundraising to support research into treatments and cures. This week the pharmaceutical company PTC Therapeutics, along with experts and families will be meeting the Federal Drugs Agency in Washington aiming to gain approval for a genetic treatment that can help a small percentage of young people with DMD.
The landscape of medical science for DMD has changed enormously over the past fifteen years, and a number of clinical trials are now taking place that will hopefully mean that its bleak prognosis can be changed. However, as a parent of a young person with DMD, the social model has been liberating and I would agree with the words of disabled activist Liz Crow when she said that her life has two phases: ‘before the social model of disability and after it’ (Crow 1992). The idea that disability is not something that is diagnosed but rather something that is created by society is essential in our fight for resources and support. My son’s impairment is not something that demands pity but rather decent support and resources for him to reach his aspirations, as well as funding for research to find a cure.
As others have argued, resilience is not about having the ability to ‘bounce back’ or being a super-parent, but it is a civic responsibility (Ungar 2005; Runswick-Cole & Goodley 2013). The past seven years in the UK have seen the celebration of neo-liberal values, where health and social support are viewed as commodities rather than rights. Disabled people have been depicted as ‘scroungers’ and ‘skivers’, creating an ‘us and them’ mentality (Runswick-Cole 2014). This has been supported by the programme of Austerity , that has implemented targeted attacks on the most vulnerable in society, in particular people with complex disabilities (Duffy 2017 – see here for visual). In a recent report, the United Nations has stated that the the UK’s Austerity policies ‘amount to violations of disabled people’s rights’ (CPRD 2016). Young people with DMD can contribute to society in so many ways if they are given the right support. In benefiting from early intervention in school to the employment of personal assistants in college or university, they can go on to do fantastic things that will be both meaningful and interesting. Of course this demands resources and national policies that celebrate diversity and inclusion rather than profit for the few.
So from our fantastic outward bounds weekend I am taking away with me the possibility of barrier removal and the exhilaration it can bring to young people who are all too often denied the opportunity of experiencing these sort of activities. I am also celebrating the families who support each other on this journey that none of us anticipated. Lastly, it has strengthened my belief in the social model of disability and the need to make the Government accountable for funding research that could eradicate DMD, whilst at the same time supporting an education, health and social care system that can support all of our young people to reach their dreams for adulthood.
Crow, L. Renewing the Social Model of Disability (1992) Early version of ‘Including All of Our Lives, Coalition News GMCDP
DfE & DoH (Department for Education and Department for Health) (2015) Special Educational Needs and Disability Code of Practice 0 to 25 Years
Duffy, S (2014) Counting the Cuts Centre for Welfare Reform Centre for Welfare Reform http://www.centreforwelfarereform.org/library/graphics-diagrams/graphic-unfair-burden-of-cuts.html downloaded 2017
Hastie , J (2017) Fundraising to Fight Duchenne: A night out with purpose http://www.dmdpathfinders.org.uk/2017/09/21/fundraising-to-fight-duchenne/ downloaded 2017
Runswick-Cole, K (2014) ‘Us’ and ‘them’: The limits and possibilities of a ‘politics of neurodiversity’ in neoliberal times Disability & Society 29(7) · August 2014
Runswick‐Cole, K., Goodley, D. (2013) Resilience: A Disability Studies and Community Psychology Approach Social and Personality Psychology Compass 2013 Vol: 7 (2) :67-78
Ungar, M. (2005). Introduction: Resilience across cultures and contexts. In M. Ungar (Ed.), Handbook for Working with Children and Youth: Pathways to Resilience Across Cultures and Contexts (pp. xv–xxxix). Thousand Oaks, CA: Sage Publications
United Nations Convention on the Rights of Persons with Disabilities 6 October 2016 CRPD/C/15/R.2/Rev.
UPIAS 1976: Fundamental Principles of Disability. London: Union of the Physically Impaired Against Segregation.