Author: Dr Janet Hoskin

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.

References:

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.

 

 

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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.

 

 

References:

 

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)

The term the Dilemma of Difference has often been used to describe the quandary that young people with a Special Educational Need or Disability (SEND) and their families face as they go through school. The dilemma is in whether we give that young person a diagnosis or label so that they can benefit from a particular support or resource, or whether we treat them just like other people so that they do not feel ‘different’ but are included in society like everyone else. In some cases this may feel like a ridiculous discussion when the hearing impaired student needs a signer, or the child with a physical impairment needs a wheelchair. Indeed, the very idea of a ‘dilemma’ sounds like something an ableist society has constructed in a paradigm that sees difference as ‘other’, something to be pitied or causing stigma. Don’t we just have to get over that way of thinking?

Or maybe it could also be argued that in some cases our desire as teachers to pathologise a child’s behaviour or learning differences has created a very medicalised model of viewing disability – a model where the teacher is the expert and the child has a problem that needs fixing.  A model where the child is viewed as a victim of personal tragedy, waiting to be saved by the professionals. 

The new SEND Legislation under the Children and Families Act 2014 is trying to move us away from having these arguments and get us to focus on where it is each individual child or young person wants to be. Rather than arguing about labels, mainstream or special school, or how much time a teaching assistant spends with you, the legislation is urging us to look at what it is the young person and their family want to see in their lives and how the professionals can help them to achieve it.  What job can they see themselves doing in the future? Where do they want to live?  Who do they want to hang out with? It is no longer the job of the teacher or psychologist to set the goals for each young person; these need to be set by the young person themselves with the support of their family.  As section 9 of the new Code of Practice tells us, children and parents are now ‘at the heart of the process’. Of course this is quite a culture change for families too. Now they have to make decisions about the future, and think about what they want the support to achieve rather than being an end in itself.

This won’t happen over night and a lot of planning, support and training for both professionals and families has been going on for the past few years across England. But it has to be a step in the right direction.  At last we aren’t just worrying about what the ‘problem’ is but focusing on the solution and how we’re going to get there.