An Ordinary Life: Imagining a World in which Disability is a Normal Part of Life

Introduction

What can we learn from deep reflection on personal and group experience that would strengthen the Church (in its broadest sense) as an agency of social inclusion in the spirit of Christ?

This paper was presented at the 10th Plenary Assembly of the Pontifical Academy of Social Sciences and draws on personal family experience, further enriched by the voices of disabled colleagues and friends, by my work as a psychiatrist and psychotherapist, and parliamentary work in the House of Lords. I have included some personal and family experience to illuminate the wider forces at work in shaping the lives of people with disabilities. My intention is to complement hypotheses drawn from experience with insights and conclusions from larger-scale studies.

Potentially modifiable determinants of disability are inspired by these stories, and I invite readers to consider implications for the global and local Church.

I have three broad aims:

1. To provide a philosophical and conceptual basis for understanding ‘disability’ as part of ordinary life.
2. To use my family and professional experience to illuminate what this means in practice.
3. To draw implications, at different levels of abstraction, for Catholic Social Teaching and Practice.

These stories are about people living good lives, sometimes having faced extraordinary challenges. People who have been loved and supported by their families and communities and helped by health and care professionals. People who have thrived when their own gifts have been recognised, but who have at times been let down by a lack of political focus when the design and delivery of public services fall short (Marmot et al., 2005, 2009; House of Lords, 2022). And stories about people with intellectual and developmental disabilities (IDD) that challenge our preconceptions and unconscious bias.

The evidence is unequivocal that health and disability are most strongly influenced by social determinants, such as the circumstances in which people are born, grow, live, work, and age (The Commission on Social Determinants of Health, 2005).

Local and regional inequalities in the context of global threats to our security

Speaking to the UN Security Council in 2021, naturalist David Attenborough called climate change “the biggest threat to security that modern humans have ever faced” – that “exacerbates the risks of conflict”. He challenged the international community to finally create a stable, healthy world where resources are equally shared and where – for the first time in history – people “come to know what it feels like to be secure”. Climate security and national security are of course linked.

Is enough attention being paid to the impact on people’s lives, of the physical and psychological harms caused by climate migration or displacement because of conflict or indeed by the threats of misinformation and manipulation by social media (Hollins et al., 2022, 2023). Disability cannot be adequately considered without understanding these global challenges.

In remembering the victims of war, the focus is often on those who died; but those who are abandoned or who live with life-changing injuries and psychological scars, shape the behaviour of future generations, sometimes building peace but often sowing the seeds of further division and disharmony. My own family experience of my father, as a traumatised D-day war veteran, has helped me to understand the role of trauma in the development of mental health problems.

The UN CRPD: A Global Framework for Positive Change

The UN’s Convention on the Rights of Persons with Disabilities (CRPD, 2006) provides a detailed normative framework, based on a human rights perspective, for what persons with disabilities have the right to expect from public policy and daily experience. This Convention is a powerful and comprehensive normative statement, ratified now by the great majority of state parties.

But the Convention was (and is) needed precisely because most people’s experience lags way behind these expectations. The history here is complex but looking back over the last century and more, two social trends are most evident: both discriminatory. The first is the tendency to understand disability, following a medical approach, as problems located within the person – and often interpreted as ‘deficits’ to be ‘fixed’ if possible. The second is the social exclusion of people so labelled – most clearly through sending them to live in institutions and be ‘cared for’, separately from the rest of society.

In living memory, both these trends have been effectively challenged in ways that point to a different future. People with disabilities have themselves articulated an alternative to the ‘medical model’: the social model recognises individual impairments but sees ‘disability’ as arising from the interaction between these impairments and the physical and social barriers imposed by the current organisation of society. The action imperative focuses then on removing barriers (Oliver, 2013; Shakespeare et al., 1997).

Similarly, and reinforcing the first point, exclusion has been seen as a denial of full citizenship and led instead to a focus on promoting everyone’s inclusion in all aspects of life: precisely the agenda of the UN CRPD.

In the British context (although there have been similar movements in many other countries) this kind of transformative change is well demonstrated in the ‘An Ordinary Life’ movement, that, in the last decades of the 20th century, sought the closure of all institutions for people with intellectual disabilities and their return to living like other people, in local communities (Towell, 2022). Transformative change requires a different way of thinking, in this example captured in the simple idea that everyone needs the opportunities and support to live an ordinary life. But of course, visions have to be ‘carried’ by people, networks and organisations; so, the story of this change is essentially about creating and sustaining a social movement that would support a wide range of people in different places and roles in taking actions, small and large, designed to advance this philosophy.

Learning from the past

Sometimes transformation fails to plant the seeds of more transformational change and lessons from the past are forgotten.

Within this change process, a particular challenge is related to the role of Psychiatry. There were many good psychiatrists who both led and supported this transformation but institutionally, psychiatrists were also the gatekeepers and often the managers of the services that needed to be transformed. People with a serious mental illness are living with a disability too and the points in this paper about listening to each person and their particular needs are deeply relevant to them.

My own work in the 1980s included clinical work in a long-stay hospital for people with IDD, complemented by work in the community developing the psychosocial support that we hoped would enable the hospital to close. With social anthropologist Dr Jane Hubert, ethnographic research in a locked ward uncovered the extent of dehumanisation caused by typical institutional practices. Long-stay hospital stays in the UK began to decline in the early part of this century with an initially successful hospital closure programme (Hubert et al., 2006, 2008, 2010). Sustaining these programmes has been challenging with unconscious bias still commonplace and a continuing failure to see each person first and foremost as a human being.

A former colleague had been sure that one very distressed man (let’s call him John) would not be able to be discharged when we closed the hospital. He has now been living contentedly in the local town for many years. When she asked him why he had behaved in such a challenging way in the hospital, he replied that he didn’t like being locked up. His story was of being bullied and abused at school. His distressed behaviour after his father’s death had led to his exclusion from school. Hospital admission was offered to give his mother a rest, but he never went home. This had been a typical scenario until community-based services in the 1980s and 1990s began to be developed as alternatives. Over time, gaps in this provision have created a space for hospitals to again offer admission at times of crisis. Less than adequate community services allow what begins with one loss, one abusive event, one exclusion and then another, to lead to an admission for ‘assessment’, and then permanent or long-term exclusion from society.

Highlighting the Harms of Exclusion

Research into the impact of adverse childhood experiences on any child, including disabled children, shows how cumulative events have long-lasting effects on both physical and mental health and life expectancy (Silverman 1996). Trauma-informed services will recognise many protective factors. But the things that tip the balance towards resiliency are in short supply for far too many people (The Belong Manifesto, 2018). What needs to change? We must learn to understand each ‘patient’, each person, first and foremost as an individual with a story, a family history, a son, brother, uncle – not first as a diagnosis. As a human being who needs friends, who just wants to belong (Emerson et al., 2011). My eldest daughter is a psychiatrist like me. She understands about the discovery of IDD in a family, the resulting confusion and the learning that needs to take place. She consults for local authority, third sector and health services, to build their confidence in understanding and responding to the needs of young families and the importance of building emotional resilience and avoiding exclusion from infancy onwards.

Author Alexis Quinn eloquently describes her own lived experience in her autobiography Unbroken (2018), including her escape from detention in enforced social isolation (called Long-Term Segregation in England and Wales) in a psychiatric hospital in the UK, long after such practices were thought to have been ended. Her admission to hospital followed her being overwhelmed by two traumatic events in quick succession. Alexis’ experience confirms other accounts of the enduring relational harms caused by confinement which have been called a ‘social death’[1] (Guenther, 2013; Borgstrom 2016). Many people subject to isolation develop an inability to feel deep positive emotion for people and a sense of who they once were. Alexis now uses her own experience to manage the Restraint Reduction Network in England.[2]

As an expert by experience, Alexis Quinn joined my government-appointed independent panel in 2020, to oversee an intervention intended to reduce the use of Long-Term Segregation, such as she had herself experienced, in mental health settings. The panel’s report, ‘My heart breaks – solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people’ (Hollins, 2023), was published simultaneously with the government’s response (DHSC 2023). The Oversight Panel had considered the findings from 191 independently chaired, multidisciplinary reviews of children, young people and adults with IDD who had been detained in Long-Term Segregation. The essence of the report was that the life stories and needs of autistic people, and of people with intellectual disabilities, detained in mental health settings, were poorly understood; that hospital admissions compounded previous trauma histories; and that lengths of stay were inordinately long. Average in-patient lengths of stays vastly exceeded those for people with mental illness. Admissions to mental health settings for autistic people and/or people with ID are typically described as a last resort when other interventions have failed or been lacking. Sadly, social and systemic interventions are rarely a priority for people with IDD.

The numbers of people with disabilities being detained, and their length of stay, are beginning to reduce with the help of culture change and community development programmes such as H(O)PES (2022), although admissions continue. In other countries including the USA and Italy, community development programmes based in meaningful relationships have had considerable success in reducing school exclusions and hospitalisations.

Co-production – doing things together

My autistic son has an intellectual disability. The list of things he can’t do is long. We prefer to talk about what he can do, but the truth is that his cognitive and executive functioning difficulties get in the way of him living an ordinary life without the right support, the right ‘scaffolding’. Perhaps, if he hadn’t had a family who tried to include him in everything, if he hadn’t had speech therapy every school day for several years as a child, he might be a non-speaking adult in a long-stay hospital ward – like the one that John lived in, and where I worked as a consultant psychiatrist in the 1980s.

He won a leadership award in 2022, for years of work teaching family members, carers and professional supporters how to use a communication tool originally designed to build people’s emotional resilience through honest storytelling. With my son’s help interpreting stories created together with artists and other experts by experience, word-free books have been published to explain both difficult life events and the everyday challenges and opportunities that we all experience.

Today there are around 80 stories told in pictures without any words and it’s no longer a university pilot but an established charitable social enterprise.[3] Because they are word-free, and because human emotions are universal, our stories are used around the world, depending on the cultural context. And these word-free stories are read in book clubs in libraries and in community centres.[4] They also provide a space to meet people and make friends. During the pandemic, the book clubs went online, and the technical and moral support for my son’s first Zoom book club was provided by one of his sisters.[5] Many of the book clubs now meet both in person and online.

Inclusive education

UNESCO’s Global Education Monitoring Report (2020) addresses the challenges of delivering inclusive education – that is, creating a system of education in which all students are able to participate and learn in regular schools but with educational experiences tailored to their individual requirements.

We can start to understand what is involved in this transformation with two examples from Latin America: the first demonstrating innovation; the second illustrating how such innovation can be delivered at the ‘whole system’ level.

In Bogotá, Colombia, there is an excellent private school, Liceo VAL, that precisely seeks to welcome a wide variety of students and address classroom effort to ensure that they are all making progress in relation to their individual educational plans (Porter et al., 2017).

In one of the provinces of Argentina, La Pampa, the education system is 10 years into a radical change process, that has already closed all the special schools and is working to ensure every regular school is able to welcome all students (Van Rompaey et al., 2024, in press).

One of my daughters worked in an all-age school in Zambia with children with ‘special educational needs and disabilities’. There had been no disabled children in the school until shortly before her arrival. Enquiries in the town hadn’t located any. A religious sister in a leadership position in the school initiated a case-finding inquiry during school assembly and identified about 120 previously unknown disabled brothers and sisters. Soon 70 of them were being brought into school to learn life and occupational skills. The remainder received home visits from a teacher once a week. A few years later the home visit programme had been extended to 1000 children, children who were no longer out of sight and out of mind, no longer hidden out of shame (Dawson et al., 2003).

Lessons for Catholic philanthropy

Child abandonment of children with disabilities is more likely in poorer communities. The Zambian children described above were sufficiently valued as human beings to have a teacher visit them at home. Their parents or other caregivers learnt useful skills and were less likely to abandon their children.

Of the 8 million children living in orphanages worldwide, a large minority have disabilities – but not orphaned. During periods of conflict or natural disaster, family members with disabilities are at even greater risk of abandonment. The charity Hope and Homes for Children (2022) works internationally to develop family support to enable all children to grow up in a family. This was also one of the ten recommendations in my report to the European region of WHO, adopted by all 52 Ministers of Health in Azerbaijan in 2012, called Better Health, Better Lives: children with intellectual disabilities and their families (WHO EURO 2010).

Hope and Homes for Children work with international companies to encourage them to use their charitable funds to provide family-based support for the children currently living in orphanages, rather than providing financial support to the orphanages. As a result, more than a million children have moved into family-based care. There may be lessons here for Catholic philanthropy. A lot of ‘orphanages’ around the world are provided through religious orders. Is there more that could be done through these efforts to invest in family-based support, especially for children with disabilities and to end ‘special’ segregated provision?

Supporting Church leaders to be more inclusive

People with disabilities should be visible and participating in church communities, requiring careful attention to the conditions required for inclusion; for example, not just separate spaces at the front or back of the church but a choice of accessible spaces on either side of each aisle enabling a disabled wheelchair user – or anybody who needs more physical space – to be able to sit with their family or friends or other churchgoers, just like everyone else. Lay and clerical roles within the church community could be fulfilled by people with disabilities in similar proportions to their presence in wider society, even if their contributions are unconventional (e.g. in their own expression of being human, such as in their communication, appearance, spontaneity). Even though the Church has moved away from the biblical requirements for priests to be without physical disabilities (Leviticus 21:18-20), this attitude remains (Eiesland, 2005), meaning it’s very rare to see anyone with a disability serving on the altar.

It is time to educate our priests, deacons and catechists about the importance of inclusion, but not only as an academic module. For example, joining a pilgrimage to Lourdes (the pilgrimage town in France), not as a chaplain, but as a helper with Assisted Pilgrims, could embed some authentic learning through extraordinary moments of grace in the genuine giving and receiving of friendship and help (also see Reinders 2008). At the French pilgrimage site in Lourdes, seminarians and clergy might experience first-hand more equal and inclusive practices in worship, such as the practice adopted by the English Diocese of Arundel and Brighton of remaining seated or kneeling at all times during Mass – an eminently transferable practice that could encourage many more people with disabilities come to Mass.

Another of my daughters focussed her Theology MA dissertation on better inclusion for disabled children and adults in Church services, using multi-sensory initiatives such as Messy Church.[6] She questioned why there are so few people with disabilities present, let alone fully participant, in our churches, and proposed adjustments to Church environments to make the sensory experience more accessible. She discovered that sensory items (e.g. candles, scented oils, and images), movement, and hands-on activities, particularly help autistic people, and people with learning disabilities, to more fully participate in prayer and worship (Hollins 2021, Margaret Beaufort Institute, Cambridge Theological Federation, unpublished). Some of her suggestions about the inclusiveness or otherwise of the standard organisation and procedure for services offer profound insights into the extent of the transformation that is needed. She was partly drawn to this research because of what she had learnt from her brother, but also from her own personal experience as an autistic woman, and from running retreat weekends for people of all ages and abilities. She also had the experience, with the rest of the family, of sharing holidays and worship with other families with children with disabilities, an opportunity that could be open to everyone. The key point here is that people with lived experience gain invaluable insights which could have huge impact if shared.

Supporting family members and people with disabilities to be community leaders

Effective co-production is achieved by doing things together. As a young woman with Down Syndrome said in a powerful short YouTube film, if you assume that she can’t then she won’t, but if you assume that she can, then her achievements and experiences may astound us (Walmsley, 2017; Coor Down, 2024).

In 2022, I sponsored the Down Syndrome Act during its passage through the House of Lords. Some Members of Parliament argued that no child should be born with Down Syndrome (DS), and that we should aim to eliminate DS before birth, as has reportedly been done in Iceland. Some people with DS listening to these suggestions are angry that people want to eliminate them. Others with DS feel guilty, believing that they are a burden. My chapter, Remorse for Being, explores the experience of realising, as a person with IDD, that others wished you were dead (Hollins, 1998; DS Act, 2022).

The Down Syndrome Act 2022 recognises people with Down Syndrome as a specific minority group and legislates for their social care needs to be met. It is the first such legislation in the world. The supporting guidance was drafted with the guidance of people with DS and their families and advocates and is now under public consultation.

Discussion

There are traditions which are difficult to change and the way we use language provides powerful examples. I struggle with some of the language used in the following passage which sustains a discourse of us and them, in part by talking about ‘the sick’ rather than people who are sick. In 1982 during the Papal Visit of Pope John Paul II to Southwark Cathedral, the Holy Father said:

“Today I make an urgent plea to this nation. Do not neglect your sick and elderly. Do not turn away from the handicapped and the dying. Do not push them to the margins of society. For, if you do, you will fail to understand that they represent an important truth. The sick, the elderly, the handicapped and the dying teach us that weakness is a creative part of human living, and that suffering can be embraced with no loss of dignity. Without the presence of these people in your midst you might be tempted to think of health, strength and power as the only important values to be pursued in life. Let us keep the sick and the handicapped at the centre of our lives. Let us treasure them and recognize much”.

Life only becomes disabling when we – each in our own way – reject people who are differently abled to ourselves. When we allow some people to become hidden exiles for our convenience. When we see some as inherently vulnerable, rather than understanding instead that our policies and practices can place people in vulnerable psychosocial situations where they are at risk of neglect, abuse and exploitation. When we are afraid. When we listen to other people’s fears and assumptions.

We can do something about this – we can make inclusion part of every person’s life from the beginning. And this should not be condition specific. But it does require that we ask each person about their own needs and make every effort to respond. And the changes that are made for one person, whether that is a ramp to the altar or an accessible toilet, may benefit many other people. The mother of a teenage boy with a neuromuscular disability wrote:

‘All of us should feel able to join in without making a big issue of being there. Any events within the church should automatically include all – this should be the norm and expectation – in churches, schools, monasteries, retreat centres. As a family, we don’t want to be separated due to disability, but enabled to fully join in with both physical and human support’.

She goes on to say:

Really see a person. Look for that spark of God, that unique giftedness in each person.

Listen to each person. Listen to those who support them. Don’t assume you know or understand their situation or feelings. Place yourself in their situation – as the person, their mother, father, brother, sister, friend – not just for a moment but throughout the day, a week – live it all – the practical, the emotional, the medical, the educational’ (Hartley, personal communication).

Before my son was born and diagnosed, I knew nothing about IDD. As a doctor I had learnt about genetic syndromes, and the ‘tragedy’ model of brain injury caused by accident or disease. Not what it is like for an individual to be born with, or to acquire physical or cognitive or emotional ‘impairments’; and who, in addition to their own struggles to make sense of our world, have to face additional environmental barriers which further exclude and disable them. I didn’t find the various models of disability helpful in making sense of my family experience (Shakespeare, 2014). And I didn’t learn about the impact of trauma, or adverse childhood experiences, in medical school. That came from my personal experiences. I didn’t understand the drivers of exclusion until I experienced them in my own family.

And then in 2005, my youngest daughter survived a criminal assault, with a permanent, high-level spinal injury. The national media treated her story as tragic, as did some of her social circle, which is an indication of public attitudes to disability. For us, she was still the same person. She was alive. Onlookers were puzzled by our acceptance of her new condition and saw her as a saint (Hollins, 2005). My daughter says of herself that her condition has brought unimaginable gifts. But she also recognises that, having been brought up with a disabled brother, and having spent time with other disabled people, gave her a huge advantage. She could imagine her life as a disabled woman.

And there are many conditions that can lead to older people becoming disabled in their later years. In Europe 52% of all people with disabilities are over the age of 65 (European Council, 2022).

One of my own contributions to the global work of the Church has focused on abuse, including as a Founder member of the Pontifical Commission for the Protection of Minors. Safeguarding offices do not yet prioritise the safety of disabled children and adults. Before I worked with disabled victim/survivors of abuse as a psychiatrist, I didn’t know that the prevalence of abuse of disabled children and adults is much higher than for other people (Groce 2005, Jones 2012).

The hypothesis is that they are relatively invisible, and experience power imbalances in nearly all of their relationships (Hollins et al., 2012). Could the Pontifical Commission for the Protection of Minors review its guidelines[7] to ensure that they do prioritise safeguarding and safe environments for disabled children and adults? Recommending adequate adaptations to safeguarding processes and healing services is a priority.

Conclusion

The breadth and fundamental importance of this agenda requires all of us to draw out implications for our own lives, roles and areas of influence. Both the causes and the responses are multi-level and multi-faceted. Cross-government and international approaches are needed. This includes recognising the differential impact of climate change and other ‘natural’ disasters. And facing up to the global threats posed by social media.

The lack of familiarity within Church communities of people who are different points to some of the most modifiable environmental barriers, the most modifiable determinants of disability that lead to exclusion. We could make church processes more inclusive; develop the orientation and skills of the clergy as inclusion facilitators; and ensure measures to prevent/ameliorate abuse (including in/by the church) by prioritising (potential) victims with impairments. Church leaders could support families to ensure children are not taken into care or ‘orphanised’.

Transformative change will only succeed if we learn from those with first-hand experience. Some with the power to implement change will have natural empathy, others will have the logistic skills and others the political authority to ‘re-pattern’ language, thought and action into a new synthesis (Sharpe, 2013). As Pope Francis said on World Communication Day 2016:

“Listening means paying attention, wanting to understand, to value, to respect and to ponder what the other person says. … Knowing how to listen is an immense grace, it is a gift which we need to ask for and then make every effort to practice”.

So, let’s listen to each other, ensure our visibility and amplify our voices. Let’s welcome all of us into our communities and offer us valued roles. Let’s support all of us to have an ordinary life. Let’s end an attitude of ‘them and us’ and show the way.

Epilogue

I will end with a poem by my daughter, Abigail Witchalls, who acquired a high-level spinal injury following a criminal assault.

Discussing this paper with her, as I prepared for the 2024 PASS Plenary, Abigail wrote the following poem, in part inspired by the writings of Edith Stein:

Mere Difference?

Let’s see differences for what they are

Not unbridgeable gulfs or forbidding brick walls

Nor irrelevant varieties or mere diversities

We’re all unrepeatable so one size won’t fit all

We all have our beauties and broken bits

We’re each a unique mix of gifts and gaps

We each show a different divine dimension

And new ways of shining His light through the cracks

 

* Professor Sheila the Baroness HOLLINS, FRCPsych, FRCP hon, FCMSA, FHEA, FIPD, Hon DD London, Hon MD Sheffield; Hon DLL Durham, Hon DLitt Bath, Hon DSc Worcester, DUniv ACU. Crossbench Life Peer, House of Lords; Emeritus Professor Psychiatry, St George’s University of London.

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Acknowledgements

With gratitude to Michael and Liz Hartley, Emily Hollins, Martin Hollins, Alexis Quinn, David Towell and Abigail Witchalls.

[1] https://www.upress.umn.edu/9780816679591/solitary-confinement/

[2] https://restraintreductionnetwork.org

[3] www.booksbeyondwords.co.uk

[4] https://booksbeyondwords.co.uk/book-club-in-a-box

[5] https://booksbeyondwords.co.uk/book-clubs

[6] https://www.messychurch.brf.org.uk

[7] https://www.tutelaminorum.org/universal-guidelines-framework/