Escaping institutions, and their shadows

Escaping segregation and my hopes for Tutankhamun
Watercolour illustration of a dark building with columns and outline of birds flying away from it, upwards into a blue sky.
Flying to Freedom, by Tan Kuan Aw. In memory of Roger.

Hello Debriefers,

We all know that you shouldn't just put disabled people in warehouses. We know the awful consequences of abuse and neglect happen when you do, not to mention how people get cut off from communities and freedom to live life as they choose.

So why is this still an all-too frequent approach societies take? We take a look at the different faces of institutions, the recent guidance governments have been given to close them down, and how sometimes getting out isn't enough to be free.

As well as exploring institutions and segregation, this issue explores other highlights coming out of last week's world-tour of disability news. Get your time machine ready, as the news will also take us to visit Tutankhamun in ancient Egypt. And we set off with a note about next year.

Getting Ready for 2023

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The places disabled people get put in

Disabled people can get stuck in many types of residential facilities, so the word “institution” covers a broad range. What they have in common is the segregation from the rest of the community, lack of choice and control for people in them, and the institution itself taking priority over individual needs.

The United Nations Committee responsible for the rights of persons with disabilities made guidelines for governments to “deinstitutionalise”, which means to get disabled people out of these places. Developed through consultation with people around the world, these guidelines show the places in which disabled people can be segregated from the community:

“social care institutions, psychiatric institutions, long-stay hospitals, nursing homes, secure dementia wards, special boarding schools, rehabilitation centres other than community-based centres, half-way homes, group homes, family-type homes for children, sheltered or protected living homes, forensic psychiatric settings, transit homes, albinism hostels, leprosy colonies and other congregated settings.”

In the European Union alone, there are 1.4 million children and adults living in institutions. This is a conservative estimate and does not include older adults in care homes. Almost half of EU countries have plans to “deinstitutionalize” but the number living in institutions is similar to what it was in 2007.

The violence and abuse in these institutions is often by design. A recent study reports that women with disabilities living in institutions are often forcibly sterilised and sometimes this is even a requirement for entry. The war in Ukraine exposed, and made worse, the terrible situation of children with disabilities in orphanages compounded by the war.

Outside of Europe, countries around the world see the awful and all-too-familiar results of these arrangements. Earlier in the year, my conversation with Bhargavi Davar from India showed some of the personal consequences institutionalisation can have and put the origin of these approaches in a colonial tradition of care.

Different ways in, different ways out?

Understanding what leads to persons with disabilities being detained in residential institutions will help us undo them. While the element of control can be a common factor, the reasons can be quite diverse, as the diversity of these institutions would suggest.

Segregation and control are not the only reasons institutions exist. We might see them as misplaced, but motives of care, safety and providing services also contribute. Maybe a family can't (or doesn't want) to support their child. Perhaps someone has a mental health condition that makes people think they are a danger to themselves or others. Someone with a disability might need a range of supports that are not seen as being available elsewhere.

The UN guidelines for deinstitutionalisation recognise the diversity of situations by highlighting concerns specific to women and girls, children, and older persons. However, that only partially speaks to the diversity of types among institutions. To what extent does the how of deinstitutionalisation differ between, say, psychiatric institutions, secure dementia wards, and orphanages?

Milan Šverepa of Inclusion Europe told me that it's “ironic” that “one size fits all has become the prevalent approach” in approaching deinstitutionalisation. He is concerned that the move out of institutions is leaving people with intellectual disabilities behind, especially those with complex support needs:

“The main goals and key principles are indeed shared across multiple constituencies. But different people will need different types of support and approaches in how deinstitutionalisation is being done in practice.”

Milan focusses on practical steps: develop social relationships; use housing and work as bases to integrate into the community; and ensure that people with disabilities not in institutions get the support they need.

Burn them down or make them less bad

One aspect of the how that these guidelines are clear about is that they argue for an immediate end to investments in institutions. Disability rights are strongly associated with this abolitionist approach to institutions.

They do not suggest an approach of reform or improving existing facilities. In theory, you could have a goal of abolition and have reforms of existing conditions as steps to get there.

In practice, taking an abolitionist approach can mean pushing back against measures that entrench long-term care facilities. See, for example, the abolish versus reform in long-term care by Disability Justice Network of Ontario, Canada, which rejects measures for reform because they are seen as strengthening institutional care.

This makes the response from the disability sector different from people who might want to reform and improve conditions in care facilities. For example I mention below the World Alzheimer Report and it explores how experiences and provision of care in care homes can be improved.

One of the most compelling reasons for abolitionist approaches to take reforming ones seriously is that the problems of institutions can be reproduced in the community. The evils of institutions are not, unfortunately, limited to the buildings themselves.

In the shadows of institutions

One of the ways that the logic and disadvantages of institutions get reproduced is the replacement of larger institutions with smaller ones. Group homes, for example, can be “small-scale institutions” where the “the autonomy and self-determination of disabled people is curtailed in the same way as in larger institutions.”

However, it is not just small-scale institutions that we need to worry about. In the United Kingdom, this is investigated by Lucy Series in Deprivation of Liberty in the Shadows of the Institution. Lucy shows that “we continue to discover ‘institutional’ living arrangements in the community”:

“The harms of ‘institutions’ did not lie in the buildings (as those living in new apartments in old asylum buildings can attest), but in radically constrained decision spaces, through logics of surveillance and control, invigilation of choices, and the imposition of other people’s goals and agendas to ‘correct’ perceived problems in a person’s identity.”

Lucy points out that “deprivation of liberty can occur even in specialist services intended to promote independent living”. Even as she recognises their power, she worries that ideas of “independence” are too easily “imbued with historical corrective discourses of self-reliance and normalization”.

Lucy gives us a way to assess how service and support are provided. She wants to avoid the slip into institutional practices, wherever they are. To do this, she uses the concept of “decision spaces” to frame our goal:

“To be clear about which choices are invigilated, why supervision is entailed, by whom, and under what limited circumstances ‘control’ or intervention might be exercised.”

Lucy's book is open access, and if you prefer a podcast, catch her on New Books Network.

Segregation and decision-making

Getting out of institutions means ensuring disabled people can take their own decisions, aren't put into segregated environments, and get support in the community. Here are recent resources that show us how to make this happen.

The path to equality in Colombia

A documentary on 2019 disability legislation provides an engaging, human look on innovative legal reform. The legislation gave legal capacity to persons with disabilities through supported decision-making, allowing people the right to, say, sign employment contracts and open bank accounts for the first time. Great to see the energy and mission of the people behind the change.

Realizing the right to work

Further guidelines for governments from the UN Committee on disability rights cover the right to work and employment. I helped in some of the early drafting of these, and one of the most important challenges we had was defining “segregated employment” and “sheltered workshops”.

These guidelines provide an important contribution in showing their defining characteristics (see para 14). This takes us an important step further, but doesn't get us all of the way. One of the arguments already used by people justifying sheltered work environments is that they are providing “training” or “rehabilitation” and the guidelines don't explicitly give us a response to that excuse.

Another vital contribution of these guidelines is on using affirmative action and quota mechanisms to create employment opportunities for persons with disabilities. The guidelines show the guardrails we need to make sure these schemes don't accidentally have negative results (see para 81).

Gaps in disability support

An important part of getting out of institutions is a meaningful provision of services and support in the community. A recent discussion paper has explored the “Disability Support Gap” and how to understand community support systems for person with disabilities in low- and middle-income countries. It highlights the different areas services need to be established, from support in decision-making, assistance in daily living, housing, to mobility and communication.

My hopes for Pharaoh Tutankhamun

One of the highlights of my years in Egypt was in the Egyptian Museum, coming face-to-face with the objects brought out of Tutankhamun's tomb, and the shock of 3,000 years ago feeling like yesterday. Imagine my second shock when, in last month's commemorations of the hundred years since his tomb's discovery, I heard he had a disability.

As well as being ill with malaria when he died at 19 years old, I heard that he had a cleft palate, curved spine and a club-foot. Not only did his tomb contain canes to be used as crutches, but also drawings show him leaning on a cane and sitting down to shoot arrows off the back of a chariot.

Sadly, ancient history moves quickly. A recent overview shows the latest consensus refuting the notion of a “fragile pharaoh”. The club foot was not observed when his mummified body was found and seems to be an idiosyncratic reading of a CT scan. Canes are found in many tombs, and probably a symbol of power rather than used as a crutch.

Further, analysis of the artistic representations also shows that the scenes with the cane and sitting down in a chariot to hunt ducks are fairly conventional. It turns out that I was not the only one excited to see Tutankhamun as disabled. Emily Smith-Sangster argues that the “desire to see these depictions of Tutankhamun as disabled” led to the images being taken out of context.

This does not mean that he didn't have a physical disability, of course. It means that we don't have the evidence to show that he did. The depictions of Tutankhamun and other Pharaohs are based on “artistic conventions of kingly representation and power” and we do not know how this relates to their bodies. In facing this uncertainty, ancient history makes us take more seriously the difference between the body itself and representations of it.

Further Highlights

Life after diagnosis

The World Alzheimer Report 2022 gives an important look at post-diagnosis support for people living with dementia. All too often, there isn't any:

“A surprising number of people living with dementia indicated they had not been offered post-diagnosis support beyond the initial information provided immediately after their diagnosis. In lower-income countries, 45% indicated they had not been offered support, while in higher-income countries, 37% indicated they were offered nothing”

This report covers an important condition and covers serious questions of how to go beyond a simply medical treatment and into social support and inclusion. We can learn from a framing that gives more centrality to carers and medical professionals than we might. And, in its only sporadic awareness of disability rights, we can see the work we have to do to get different constituencies on board with our approaches.

Words of the month

  • “A heavy wheelchair is handy for wrongfooting the police.” – climate activist Nick Hodgkinson.
  • “Not all wheel folk are real folk.” – David Radcliff describing the Governor of Texas.
  • “Every trip outside is an advocacy campaign.” – Abhishek Anicca, tired of playing the activist.
  • “Everybody thinks that the future is just something for younger persons.” – Claudia Mahler on older persons being left out.
  • “Strange lines between liberation and exploitation.” – Michaela Coel on how what happens to us can be more than one thing at once.

And much more...

Laurel, a friend and supporter of the Debrief, found her own adventure through the curated news, to make her own e-breakfast:

“Between waking at 6.30 and now, that is 90 mins later, I’ve been to Indonesia with the blind masseurs losing their traditional profession, I’ve stood in the street with the bike-dodging buskers, met the very engaging guy with leprosy who I could listen too for hours, and enjoyed a whole episode of The Documentary tracing the released deaf slave back to Freetown and that church filled with singing. I've been swept off round the world hearing personal stories, immersed through video into completely different environments and cultures.”

I hope you all enjoy your own adventures in disability news and I'm honoured to share it with you.

Cheers,

Peter

Share your adventures in the news: press reply on email, leave a comment, or find me on Linkedin and elsewhere.

Acknowledgements

Tan Kuan Aw's illustration of the Flight to Freedom is done in the enduring memory of Roger, a brave an enlightened friend who did not get beyond the shadow of the institution.

Thanks to Áine Kelly-Costello for insightful review of this edition.

Thanks to comments from Milan that helped me understand more about deinstitutionalisation, and to Tom Hardwick for dashing my hopes about Tutankhamun's disabilities.

Many thanks to readers and Sightsavers for the support that keeps this going. News curation is done with support of the Center for Inclusive Policy.

The Debrief is produced by me, Peter Torres Fremlin. Opinions or mistakes are mine.