#IDPWD2020 – Disability, Social (In)visibility, and the Importance of Open Justice

Today – 3rd December 2020 – is designated by the UN as International Day of Persons with Disabilities (#IDPWD2020) and this year, we as a global society are asked to focus on ‘invisible disabilities’.

Invisible to whom?

‘Invisibility’ is a facet of disability, and of disabled experience, that is all too familiar to those of us within disabled communities, as we are aware of the challenges experienced by those of us whose impairments do not cause the physical deformities, scars, or other outward signs that the general public seems to expect of ‘disability’. Indeed it seems too that the rest of society is slowly catching up to the existence of such impairments – with many accessible toilets in shopping centres, supermarkets, and coffee shops having signs on their doors reminding customers that ‘Not All Disabilities Are Visible’. This certainly seems to be a concern of the moment.

Such growing awareness of the existence of ‘invisible disabilities’ is certainly to be applauded, if it prevents seemingly ambulatory disabled people with Blue Badges (parking permits entitling the holder to use accessible parking spaces) from being harassed or abused in car parks, or enables people to access facilities and adjustments to make life easier, without the anxiety that requesting or using such measures will be met with disbelief or hostility by self-appointed gatekeepers. But, as with so much of how the non-disabled world views ‘Disability’, the concept of the ‘Invisible Disability’ seems to have been constructed as an individual issue, located within a disabled person’s body-mind, and in a socio-political vacuum. The issue rests with the subject, not the viewer.

However, when I think of ‘Invisible Disability’ I consider another aspect of ‘invisibility’. I think about how much of my life as a disabled person, and how many of my experiences relating directly to my multiple impairments, seem to exist in a parallel world that is invisible to – or hidden from – non-disabled society. As an autistic woman who is also a wheelchair-user, I straddle the boundaries between ‘invisible’ and the ‘ultra-visible’ impairments, and I am acutely sensitive to the ways in which the ‘Able Gaze’ can shape one’s experience of disability (I have written about it – here ). But I am also mindful of a different aspect of the ‘invisibility’ of disability.

Social Invisibility

I remember discussing a trip to London with an acquaintance. I complained about unreliable transport, and about how complicated I found it trying to establish whether specific train or Tube stations were accessible. She replied with surprise – ‘Doesn’t everywhere have to be accessible now?’. I have similarly been met with shock when I tell friends I am charged on average 2.5 times the standard rate for a taxi journey. Conversely, members of the public engage me in conversation and make it clear that they assume I live in Local Authority funded accommodation, I am not in employment, and that the benefits and social care support I receive are considerably more extensive than those I do in fact receive. Disabled existence is a mystery to large swathes of non-disabled society, and the challenges and limitations that inaccessibility places on life with impairments are invisible to the mainstream majority. For some disabled activists, such as myself, sharing our experiences (such as via blogs or social media) is a key aspect of our activism – precisely as an attempt to make the invisible visible – but this comes at a cost, and it is always incomplete. I am relatively open about my impairments and their impact on my life, but when it comes to the most challenging impacts – the moments of despair, of disgust, of hopeless, defeated sobbing: the moments when existing in a world that is not designed for me, that views my presence in it as an unfortunate encumbrance, seems like too much, like too high a mountain to climb – those moments remain hidden. They are invisible. And while they remain invisible, I am on my own with them. They are my challenges alone.

Open Justice – A step towards liberation

It is my view that society should be made aware of how it treats its disabled members – and that ‘social invisibility’ is a form of willful ignorance, and an unjust privilege. Oppression thrives in darkness, and it is most efficient and effective in silence and in isolation. It is for this reason that I am passionate about the importance of transparency in terms of the legal and political policies, procedures, and bureaucracies that shape disabled existence in our society – because shedding light on such structures is one way in which they can be held to account, and injustices embedded within them can be dismantled.

This is why I am proud to be a co-founder and co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project (openjusticecourtofprotection.org) – We promote transparency in the Court of Protection: a court that can impact significantly the lives of disabled people who lack the mental capacity to make key decisions in their lives. The public has for some years had the right to observe hearings in the court, but this can be a challenge for people without relevant legal understanding or knowledge of court procedures, and public and press attendance at Court of Protection hearings has been minimal. We therefore support people to access and observe proceedings – e.g. by highlighting the details of hearings people may wish to observe on our website (our ‘Featured Hearings’), by providing information (our ‘Observer Resources’) and by publishing observations, along with posts on topics of interest, on our blog (we have posted over 70 blogs from more than 65 contributors since 15th June). In this way, members of the public – including health and social care workers, lawyers, educators, family members and advocates for disabled people, and ‘interested individuals’ – have been supported to observe the ‘law in action’, and to write about, thereby highlighting, the details of court proceedings, and of the social and political issues affecting the disabled people at the heart of them.

These have included:

  • A young man called ‘Michael‘ with complex needs, for whom no suitable accommodation had been identified.
  • The failure of expert evidence as to whether ‘Barbara‘ had the mental capacity to decide where she lives, the care she receives, and with whom she has sex.
  • Whether a person with Dementia should be medicated covertly.
  • Whether ‘AB‘ (who has Anorexia) had the capacity to decide whether or not to be tube-fed.
  • Questions of accountability for the rape of a woman with ‘significant learning disabilities’ (‘KB‘)

Many decisions of significant impact in the lives of disabled people are taken away from society’s sight. Decisions about my own life – my education, my employment, my access to healthcare, and to benefits – have taken place in hospitals, or local government offices, without public access, and often without me being present. Where we have the chance to shed light on, and to scrutinise decisions that shape the lives of disabled people, I suggest we have a strong moral imperative to take this chance. It is by doing so that we challenge the social invisibility of disabled people, and of the experiences that shape our lives.

And social visibility is a powerful step towards liberation.

#AutisticPhDiary 3 – Advance Decisions Study Update, and the Open Justice Court of Protection Project


Observant readers will have noticed that I missed posting my weekly PhD update last Sunday night. This is because I was busy working on an exciting new project that launched last Monday – more of which below. Firstly though, let me fill you in on what I’ve been doing with my PhD.

PhD Update – Why making an Advance Decision is a holistic process

I have been working on my PhD study looking at the views of disabled activists on the subject of advance decision-making: Advance Decisions to Refuse Treatment (ADRT) and Lasting Power of Attorney (LPA). A question I’ve been exploring in my data is why, when so many of the participants seemed to be supportive of the right to refuse treatment, and of Advance Decisions in principle, only one of the 15 people I interviewed had made one for themselves.

One very good reason why a person would choose not to make an ADRT is if there are no treatments they would wish to refuse in advance. Some people have philosophical or practical reasons for this, so I wanted to see if any such reasons were represented among the activists. I found one participant (“Georgia”) who seemed to fit into this category, so I decided to explore her views further.

In our interview, I had asked Georgia if there were any circumstances in which she could envisage that she would wish to refuse treatment, and she said that she couldn’t – “because until I’m there, I don’t know”. Our conversation indicated that, like many people, Georgia viewed an Advance Decision as something that applies to end-of-life circumstances and life-sustaining treatments. She saw the decision as being concerned with whether a person would want to live a (potentially severely disabled) life post-treatment, with treatment refusal being a way to avoid this, adding that “it might not be as bad as we think it would be”; and referring to “research” that indicates people have a tendency to “think things are going to be…awful” living such a life, but that when “it happens to them” the situation is “not as bad as they thought”. This means that she wouldn’t wish to refuse medical treatment in future and risk “missing out” on a quality of life that is more tolerable than she may have predicted.

This kind of view is very prominent in disability rights activism. We are used to defending ourselves from people who tell us (seemingly as a compliment) that they would rather be dead than live with your impairments; and we have experienced our own “journey” of “getting used to” the onset or progression of our impairments. With this as our frame of reference, it can be anathema to us to consider that we may wish to outline a situation in which we would rather refuse life-sustaining treatment than live with profound or severe impairments. It “goes against our grain”. It also seems, on the face of it, to provide a clear-cut illustration of a situation in which an Advance Decision would not be appropriate.

But then I looked at what else Georgia and I discussed during the interview. And I found that we talked about Georgia’s medical history and activism. She told me about a new treatment for her impairment about which she was sceptical, as “I don’t feel it’s been researched properly”. She also worried that the parents of children with her condition were subject to “social pressure” to pursue the treatment for their children, but commented “I don’t think my life is that bad and I have not had the treatment. So why would it be amazing for them to have it?” This treatment is given during childhood, and would not be offered to Georgia. She wouldn’t need to consider making an Advance Decision to protect herself from being subjected to it if she were to lose capacity in the future. In itself, it therefore isn’t a reason to challenge the position that she does not need an ADRT.

What this point does illustrate though is that there are circumstances in which Georgia may contemplate refusing medical treatment. I think this is important, because it shows how important it is to go beyond asking a direct question that seeks to elicit information about specific treatments a person wishes to refuse. In Georgia’s case, such a direct question would establish that she does not wish to refuse any treatments in advance. Instead, it is key to have a comprehensive, nuanced discussion about the person, their experiences and values. Doing so with Georgia has cast doubt on the position that an Advance Decision would be inappropriate for her. Instead, it may be appropriate to provide her with examples of situations in which Advance Decisions can be used in other situations (i.e. not specifically to refuse life-sustaining treatments. Given that we know Georgia is not philosophically opposed to the refusal of medical treatment, and that she is keen to defend life with impairments, it is possible that she may come to a different conclusion regarding her personal use of ADRTs with access to further information. It is also possible that – particularly for a disability rights activist – a direct question regarding their intention to refuse treatment in advance may elicit a defensive response in the way that I outline above. A broader, more nuanced conversation allows for the nuance and person-centred approach that could enable a person to outline their views and values more comprehensively.

I think that I’ll be able to incorporate this finding into my analysis, and that it will contribute to knowledge about how best to support disabled people to access their right to advance decision-making. We shall see…

Exciting news – Launch of new project

As I hinted above, the last couple of weeks have been very busy. This is because Celia Kitzinger and I have launched a new project!

The Open Justice Court of Protection Project promotes transparency and open justice in the English Court of Protection – a court established by the Mental Capacity Act 2005 to make key decisions in the lives of disabled people who lack the capacity to make such decisions for themselves. It builds on Celia’s and my respective research in the Court of Protection, and is encouraging and supporting people to be Public Observers of court hearings, and write about them on our blog.

You can find out more about the project on our website openjusticecourtofprotection.org – It has really taken off, and attracted much more interest than we thought it might, proving that there is a real appetite for promoting transparency and public scrutiny of a court that makes, and sanctions, often life-changing decisions in the lives of some of the most vulnerable members of our society.

I am delighted to be co-directing this project with Celia, and look forward to making a difference and creating socio-legal change with it.

Life in general

Lots of work and excitement means that I am tired right now – and weak. But I am also intellectually, politically, and emotionally energised, and feeling competent and capable. It is such a tightrope being a person with disabilities and chronic illnesses who is passionate about her work, and has high standards about what she wants to achieve in life. Becoming (more) ill in the last couple of years has robbed me of a confidence I used to feel – that I could do anything I put my mind to, if I just worked for it (I am very lucky to have been brought up to believe that by parents who encouraged and believed in me). I have always assumed that things need doing, and my job is to work until they are done.

But chronic pain and chronic fatigue throw a spanner in those works, and life suddenly becomes unpredictable. You never know until you wake up in a morning how you’re going to feel that day – and whether you are going to be efficient, productive, and able to manage pain; or whether you’re going to spend most of the day in bed, crying because you know you’ll feel better if you eat, but you can’t get to the food – and you’ve had to cancel meetings and extend deadlines, and you hate letting people down. And unlike for most people, this isn’t a “sick day”, this is your life. You can’t guarantee that you’ll feel better tomorrow or the next day. What if this is yet another “progression” of your disease? What if this is the “new normal”?

But right now, I am working hard and enjoying myself. I feel like someone who can do things – not like a “disabled person” (I know those two categories are not mutually exclusive). All the symptoms, and the disability-bureaucracy are still there, but they’re not my focus. Hyper-focusing on work enables me to put them into the background, and concentrate on something good, and useful, and important.

It’s inevitable that exhaustion and pain, and sickness, and inability to work will be features of my life for the rest of my life. But I refuse to live my life on that basis. I will cross that bridge when I come to it, and enjoy doing what I love until then. One day at a time.