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.
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.