Making Disabled Lives Visible – Reflections Two Years On

By Gill Loomes-Quinn, 13th June 2022

One of the many challenging aspects of being disabled in our society is the isolation that comes from those around you being ignorant of, and failing to comprehend, the ways in which living with impairment(s) in a disabling society impact the life of a disabled person.

My own experiences of this fall broadly into two categories:

1.  Non-disabled people are often unaware of, and unprepared for, the complications, barriers, and manifold frustrations that disabled people face when trying to complete the most basic of tasks. This has included friends showing surprise that much of the London Underground is inaccessible to me (as a wheelchair-user) because they “thought the law said that everywhere has to be accessible now”, and that I need to call ahead before going practically anywhere to make extensive checks for accessibility and requests for assistance and being even more surprised when such assistance often fails to materialise. To them, this is remarkable. To me, it is “life”.

• In perhaps paradoxical contrast to the ‘surprise’ reaction, non-disabled people demonstrate that they imagine my existence to be pitiable – including total strangers offering to pray for me, others telling me they would “lose the will to live” if they were “like [me]”, as well as taxi drivers bringing me home from work expressing surprised congratulations that I am employed. This latter category of ‘pity’ beliefs was analysed critically by disabled journalist, Lucy Webster, in a recent article in the Guardian, entitled “Some people think they would rather die than have help brushing their teeth, but care is not tragic”. I think she sums up well how out of touch many non-disabled people are with the everyday experiences of disabled people.

One of the key reasons for my research interest in the work of the Court of Protection, and why I am so proud of what we have achieved so far with the Open Justice Court of Protection Project, is that the court deals with the everyday lives of disabled people deemed (or who may be deemed) to lack capacity. In the past two years, we have covered, and hopefully drawn public attention to, the myriad of issues affecting disabled people – including serious medical treatment at end of life, the long, drawn out search for a suitable ‘placement’ (home) for a young disabled woman, pregnancy and birth, and how global events, such as the Covid Pandemic have impacted disabled people – including receiving vaccinations, and the right to visits with family and friends in care homes.

Some of the cases we have written about have been ‘sensational’ in nature – covering the most shocking of circumstances in which anyone may find themselves – such as the asylum seeker engaged in a hunger strike to have his understanding of his date of birth recognised by the authorities (here, here, and here). And cases challenging inequalities and discrimination in health access faced by disabled people – such as failure to provide treatment for cataracts in a timely fashion that would be available to a non-disabled person; and whether a kidney transplant was in the best interests of a disabled young man.

But many cases engage the most taken-for-granted of everyday human experiences, such as access to medication, and to pets and hobbies, and the right to engage in the intimate relationships of one’s choosing. For me, this speaks to my cultural heritage as a disabled activist, as themes that have concerned disabled activists for decades are played out daily in the Court of Protection.

To give an example, it is now 30 years since Anne Finger wrote her heartfelt critique of social attitudes to disabled sexuality (and the responses of the disabled people’s movement thereto). And these same themes have played out in some of the most prominent cases before the Court of Protection in the past two years, as the court has adjudicated on matters such as the rights of disabled people to access prostituted women/sex workers, and revising the definition of capacity to engage in sex to include understanding that the other person must be able to give/withhold consent (and actually do so) before and during sex (covered here and here). Back in 1992, Finger wrote that “Sexuality is often the source of our deepest oppression: it is also often the source of our deepest pain”. And she argued that it was “crucial that the disability-rights movement starts to deal with it”. The prominence of themes of sex and reproductive rights in today’s Court of Protection suggests strongly that three decades on, society as a whole still has a long way to go until disabled people can be considered fully equal sexual citizens. It is my hope that the work of the Open Justice Court of Protection Project in supporting people to observe these themes played out in court will contribute to an awakening of social conscience and drive us towards such equality.

In more general terms, Disabled feminist activist, Jenny Morris, describes the injustice of the political invisibility of disabled people’s experiences in her foundational text ‘Pride Against Prejudice’, where she writes:

Disabled people – men and women – have little opportunity to portray our own experiences within the general culture, or within radical political movements. Our experience is isolated, individualised; the definitions which society places on us centre on judgements of individual capacities and personalities

(Morris, 1991: 10)

I see the work of the Open Justice Court of Protection Project as contributing to and continuing the political work of making the experiences of disabled people – the good, the bad, and the ugly – visible within more mainstream cultures, especially those with power in our lives. It is very often the case that the court is one place where ‘P’ (the disabled person lacking capacity at the heart of a case) is able to “portray [their] own experience” on a public platform (as we covered here). Indeed, this is one function of the court that is not available when best interests decisions are made about disabled people’s lives ‘behind closed doors’ – in Local Authority offices or care home meeting rooms. And when ‘P’ is not afforded a ‘voice’ in court, the public nature of the proceedings means we can observe and comment on this (as here). It is for this reason that I am so pleased with the number of people with professional backgrounds in health and social care, law, and the family members and other advocates of vulnerable people we have supported to observe and write about their observations of the Court of Protection in action.           

There is so much more to be seen and understood in observing the court in action than one can access by reading a published judgment – the relationality, the emotion, the humanity of a case. And this matters for multiple reasons. First, and most fundamentally, disabled people have a right to be visible within society – to be seen and recognised as part of society. But further, I believe that social change to improve the circumstances of disabled people – especially those of us who depend on social care and the support of our non-disabled advocates and allies – depends on those outside ‘the movement’ grasping the nature of the issues we face. I don’t pretend this is all that is required. But I see it as an essential component of such change. This is especially the case where the disabled person at the centre of a case is unable to communicate their own experiences in any way due to the impact of their impairment(s) – as is the case where ‘P’ has, for example, a profound brain injury leading to Prolonged Disorder of Consciousness (PDoC), or is otherwise unable to communicate either verbally, or using Assistive/Augmentative Communication (AAC) technology, sign-language, gesture, or other reliable non-verbal communication. And it is my view that we, as a disability rights movement, let these people down when we fail to engage with, and support the non-disabled loved ones and other allies of such people. I see the Open Justice Court of Protection Project as key to such partnerships, and to ensuring that we, as a movement, take all our members forward with us and lift up everyone’s ‘voice’ and experience in our advocacy.

Several observers have explained in their blogs how observing the Court of Protection in action has impacted their understanding of mental capacity law, and its impact on disabled people’s lives. In one of our earliest blogs Mereil Scott, an aspiring barrister,  explained that “This hearing demonstrated to me the way in which the Court of Protection can work very efficiently to enable people’s voices to be heard”. The difference between the ‘letter of the law’ and its implementation has also been a key theme – Samantha Williamson told how she

…had been struck by how different it is reading judgments and legal commentary on cases (all neatly summarised and structured) compared with observing cases in the Court of Protection.

And the “reality of applying the ideals of the MCA 2005” was also made clear to law student Lucy Williams by observing the Court of Protection in action. She explained the distinctions between legal theory and its practical impact like this:

In theory, it’s easy to say that decisions should be made in P’s best interests, but even when…everyone agrees what that is, judges have to deal with real world issues…I’ve learnt that the Court of Protection’s role is also about managing the concrete particular details of a particular P in the specific conditions of her life, and in the context of over-stretched health and social care services.

I am delighted to think that over the last two years our project, run on passion and zero funding, has supported people engaging with disabled people deemed to lack capacity.  This is key to providing them with a better ‘real world’ grasp of the issues affecting their service users, clients, family members, and friends. And I look forward to seeing the fruits of cultural change that will be harvested from the seeds our project is sowing.

Gill Loomes-Quinn is a disabled scholar-activist whose ongoing PhD research on disabled ‘voice’ in mental capacity law received an award from the Caroline Gooding Memorial Fund. She is co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project and is also proud to be a convenor of the Participatory Autism Research Collective (PARC). Gill tweets @GillLoomesQuinn

Photo by Michael Dziedzic on Unsplash