By Andrew Reece
‘People, people we are the same
No we’re not the same
‘Cause we don’t know the game
What we need is awareness, we can’t get careless
You say what is this?
My beloved let’s get down to business
Mental self defensive fitness
(Yo) bum rush the show
You gotta go for what you know
To make everybody see, in order to fight the powers that be’
Public Enemy – Fight the Power (1989)
Public Enemy may have been writing about the pervasive harm of racism, the oppression of African-American people and the misuse of power by white America, but do we now need a similar ‘liberation struggle’ from and for people with autism and/or learning disabilities?
In a week that has seen the publication of reports from CQC and LeDeR and a shocking and shameful documentary from Panorama, we seem to be stuck with a medical model of learning disabilities and autism that locates the ‘problem’ in the individual and seeks to ‘cure’ those problems by ‘treating’ the individual with a learning disability and/or autism in inappropriate hospital settings.
I would like to suggest that the Government’s answer, to bring together a panel of experts to develop new models of support, will not succeed unless it challenges the systemic, legal and societal power of the medical profession, that allows a single profession to dominate the discourse, the way that as a society we think about learning disability and/or autsim.
The medical model of care was relevant to a pre-NHS world. But like the Fire Service, that has so successfully reduced the number of people harmed by fires, the medical profession has been a victim of its own success as life expectancy has climbed and climbed. Unlike the Fire Service, it has not adapted to the world where the need to keep people alive needs to be balanced by the need to work with others to ensure a good quality of life, and a world where the solutions to the emerging health problems are social not medical (see the excellent Marmot reports).
This is not a rant against Doctors. The best Doctors, including those who I work with on a daily basis, embrace the need to work in a person centred way, to co-produce with people with learning disabilities and/or autism and their families and to respect the views of other professions, even when they are contrary to their own. The problem is that the system gives so much power to ‘responsible clinicians’ that if they chose to ignore others, to see people as symptoms and not people, it is very difficult for people with learning disabilities and/or autism, their families or other professionals to challenge this.
Where no such challenge exists we end up with people stuck in ATUs, with the Panorama exposing the shame, with people dying from neglect, sub-optimal care and ‘diagnostic overshadowing’ leaving families fighting for years for the truth to come out.
Given that it nearly 40 years since the UPIAS first articulated the Social Model of Disability and disabled people living in institutional settings set up their own ‘escape committees’ in order to be lead the struggle to be ‘allowed’ to live ordinary lives in ordinary homes, maybe we now need an explicitly Social Model of autism and learning disability to drive new escape committees.
In the same way that the social model of disability showed us that to liberate disabled people from oppression, society needed to change, we now need to ‘fight the power’ of the medical model of autism and learning disabilities and replace it with a social model of learning disability and autism that articulates the need for society to change in order for people with learning disabilities and autism to be able to live fulfilling lives as active and valued members of their own local communities.
Perhaps the failure of the Social Model of Disability is that it has failed to be so fully adopted in the area of mental health. Mental Health is still lead by Doctors who, bottom line, can only offer drugs or surgery to ‘treat’ mental health concerns. As Peter Vermeulen said in 2014
“instead of having goals such as higher IQ, or fewer autism symptoms, we should be focusing on happiness – not less autistic, but autistically happy’ (conference presentation)
It’s time for Social Work and social care to ally with people with learning disabilities and/or autism their families and other health professionals to ‘fight the power’ of the medical model and remind us all that we are proud to have a National Health Service, not a National Medical Service.
Andrew Reece of Head of the integrated Camden Learning Disability Service