By Gill Loomes-Quinn – 18th June, 2020
Today is Autistic Pride Day. It is the fifteenth time June 18th has marked the celebration since it was inaugurated by the campaign and solidarity group Aspies for Freedom in 2005, and subsequently taken up and developed both on- and offline by the autistic rights movement globally. As an autistic person, and a socio-legal researcher whose work focuses on the practical implications of the Mental Capacity Act 2005 – particularly the work of the Court of Protection, I reflect in this blog on why I see transparency in the Court of Protection as an issue of concern for the autistic rights movement, and why I think those who care about the values of Neurodiversity and justice for autistic people should engage with the work of a court that is a significant location of social and legal power in the lives of many autistic people.
Mental Capacity and Autism
While by no means all autistic people are deemed to lack the capacity to make key decisions for themselves throughout the course of their lives, and while it is of course not exclusively autistic people who find themselves subject to the legal framework of the Mental Capacity Act 2005; there is certainly a considerable overlap between the autistic community and people deemed to lack mental capacity in relation to at least some decisions. It has been my experience since I began my career as a specialist autism advocate in 2007 (coincidentally, just one month after the Mental Capacity Act 2005 came into force fully, on 1st April 2007) that the “worlds” of autism and mental capacity law and practice operate in rather distinct “bubbles”, with each appearing at times to be rather hazy about the dispositions, needs, and requirements of the other. A welcome exception to this general picture is found in the work of Dr Yo Dunn who can be heard here, talking about the impact of mental capacity law on autistic people (though note that parts of Yo’s interview are now outdated, and should be read in conjunction with the Government Response to the Law Commission’s Review of Deprivation of Liberty Safeguards and Mental Capacity).
My own experience resonates clearly with Yo’s description of engaging with social care, and mental capacity law, and realising the frequency with which the mental capacity law I encounter (the published judgment I read, or the commentary I see) centres on the life of an autistic adult. We know that autistic people have been at the heart of many of the cases that have driven forward the development of mental capacity law – not least in the landmark Bournewood Case (HL v UK 45508/99  ECHR 71) that triggered the development of the Deprivation of Liberty Safeguards. It is my view that given the number of autistic people whose lives are impacted (often profoundly) by practices shaped by the Mental Capacity Act 2005, including the work of the Court of Protection, autistic culture should form a significant part of socio-legal discourse surrounding the MCA 2005 in practice, and the Act should be a focus of concern and scrutiny for members of the autistic community and our allies.
Witnessing Law in Action for Autistic People – An Opportunity for Activism
As an autistic community, we ar
eused to seeing devastating wrongs perpetrated against members of our community – the most outrageous scandals where we are left shouting for something to be done, for laws to be changed, for more scrutiny (e.g. the Winterbourne View scandal; Justice for LB; the abuse at Mendip House). So often it seems we are powerless against the risks posed to those of us who are most vulnerable in a society not designed by us, or for us, and in which we are so used to being devalued that our very humanity often appears to be in question. “Behind Closed Doors” is a frightening place if your human rights are a subject for debate.
But the Court of Protection is not “Behind Closed Doors”. Since the introduction of the “Transparency Pilot” in 2016 the majority of hearings that take place in the court (up to 30 in a day, across the country) are open to the public. This means that they are available for us to observe – to see how decisions are made that affect the lives of members of our community; to understand how the law works in practice; and to inform our political discourse with knowledge of what actually happens to those of us whose lives are impacted by the Court of Protection. This is not something we need to fight for. It is something we can do – right now.
At the Open Justice Court of Protection Project, we are supporting people every day to access hearings, and we are publishing their observations on our blog. I would very much like it if some of those were autistic people and our allies.
Gill Loomes-Quinn is an a socio-legal scholar and disability rights activist, with a background in specialist autism advocacy, and academic Autism Studies. She is passionate about promoting the role of social research in the pursuit of social change for autistic people. She held a teaching fellowship at ACER – the Autism Centre for Education and Research – University of Birmingham for several years, and has experience as a research consultant: Including the the Autism Education Trust, the International Disability Rights Monitor, and Inclusion London. Alongside her current PhD research, Gill works for Leeds Autism AIM – as a peer support and development worker, and is a convener of PARC (the Participatory Autism Research Collective).
Gill is co-founder of the Open Justice Court of Protection Project – she tweets as @GillLoomesQuinn