Truth commissions on disability institutions: towards a disability truth and repair framework

Abstract

Article 19 of the Convention on the Rights of Persons with Disability provides for the right to live independently and be included in the community. The UN Committee on the Rights of Persons with Disabilities clarifies that this right requires States parties to undertake deinstitutionalization that extends to providing ‘remedies, reparations, and redress’ for institutionalization, including through establishment of truth commissions. In this article I argue for the development of a Disability Truth and Repair Framework to support future design and critical evaluation of truth commissions on disability institutions. I map out a series of conceptual and practical considerations that can inform the framework, by reference to philosophical scholarship on moral repair and critical disability studies scholarship on institutions. Considerations include temporal, familial, and cultural dynamics of institutionalization, connections between institutionalization and other dynamics of oppression and settler colonialism, professional, government, and charity power, and diverse lived experience and accessibility needs.

1. INTRODUCTION

In this article I argue for development of a Disability Truth and Repair Framework to support future design and critical evaluation of truth commissions on disability institutions (‘institutions’). I map out a series of conceptual and practical considerations that can inform the framework. I do so by reference to philosophical scholarship on moral repair and critical disability studies scholarship on institutions and reflections on examples of recent disability truth-telling initiatives.

My focus on truth commissions is grounded in recent developments in international disability human rights law. Article 19 of the UN Convention on the Rights of Persons with Disability (CRPD) provides for the right of disabled people to live independently and be included in the community.¹ The UN Committee on the Rights of Persons with Disabilities (‘CRPD Committee’) clarifies that this right requires States parties to undertake deinstitutionalization which extends to ‘remedies, reparations, and redress’ for institutionalization, including through establishment of truth commissions (‘deinstitutionalization truth commissions’).² Beyond the institutions context, there is emerging discussion on inclusion of disabled people in mainstream transitional justice processes. Building on UN Security Council Resolution 2475 of 2019 on disabled people and peacebuilding,³ the former UN Special Rapporteur on the Rights of Persons with Disabilities has identified the importance of including disabled people and disability-specific injustice in collective moral repair.⁴

Parallel to these UN developments, there are mounting calls by disabled people, their advocates and allies for truth-telling and reparations.⁵ Some governments are beginning to introduce truth-telling initiatives on institutionalization and other forms of disability injustice, including the Massachusetts Commission on the History of State Institutions for People with Developmental and Mental Health Disabilities in the Commonwealth in the United States of America⁶ and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability in Australia.⁷ And, in the absence of such official forums, disabled people and their allies are developing their own community driven opportunities for truth-telling. These community-led initiatives include place-based memory projects such as at the site of the former Southwell Workhouse and Firbeck Infirmary in England,⁸ online education resources such as a website containing videos of first-person accounts of institutionalization in Canada,⁹ and life stories offering disabled people’s accounts of institutionalization such as Robert Martin’s experiences in Aotearoa New Zealand and Kim Walker’s experiences in Australia.¹⁰

The CRPD Committee’s call for deinstitutionalization truth commissions marks a significant development in international disability human rights law that has historically focused on access to justice through domestic justice systems.¹¹ Similarly, disability human rights scholarship on access to justice has largely focused on disabled people’s participation in domestic justice systems and training of those working within these systems.¹² This scholarship has not considered other avenues for justice in light of inherent limitations of using domestic justice systems to address systemic human rights violations against disabled people, particularly those that are normalized, socially authorized or legal and hence beyond criminal prosecution and civil remedy.¹³ Conversely, UN commentary and scholarship on the ‘right to truth’, truth-seeking, truth-telling, and truth commissions¹⁴ has not focused on disabled people’s experiences or needs, nor on disability-specific injustice such as institutionalization.

Disability scholarship has not kept pace with activist and international human rights law developments on disability and truth-telling. There is nascent scholarship on truth-telling and reparations for disability-specific injustice¹⁵ and participation of disabled people in mainstream transitional justice processes.¹⁶ Yet, a mature field of scholarship on disability and truth-telling which evaluates existing practices and provides a conceptual framework to guide future developments—including specifically in relation to deinstitutionalization truth commissions—is yet to emerge.

Thus, I aim to provide some preliminary critical reflections at the intersections of disability, truth-telling and institutions as a foundation for developing a Disability Truth and Repair Framework for future use by international disability human rights scholars, disability rights activists, and human rights and transitional justice practitioners. The article’s key contribution is to expand the scope of existing disability international human rights scholarship on access to justice, freedom from violence and torture, and independent living by orienting scholars towards truth-telling and reparations practices and philosophical scholarship on moral repair. In a context where truth commissions have not focused on disability injustice nor focused on disabled people as a group of participants, the article also contributes a critical disability perspective to mainstream international human rights and transitional justice scholarship on truth-telling and truth commissions, providing impetus for further inclusion of disability in that work.

2. DEINSTITUTIONALIZATION, THE CRPD, AND THE CALL FOR TRUTH COMMISSIONS

Millions of disabled people globally are currently in institutions or have had that experience.¹⁷ Institutionalization of disabled people is the most pervasive form of segregation, discrimination and exclusion disabled people can experience, keeping them separate throughout their lives and even in death. From mid-20^th century, deinstitutionalization policies in many nations in the Global North have led to closure of some institutions and movement of some disabled people from those institutions into the community.¹⁸ Despite these seeming advances, there are three ways in which globally deinstitutionalization remains an ‘unfinished project’.¹⁹

First, there are many nations where deinstitutionalization has not occurred.²⁰ Instead, in some of those nations new institutions are being built, including at times as a sign of ‘modernization’²¹ of Global South or post-Socialist Nations and with financial support from the Global North,²² or deinstitutionalization is impeded by reason of armed conflict or colonial occupation.²³ Disabled people continue to resist institutionalization and the conditions within these places.²⁴ Second, in those nations where deinstitutionalization is said to have occurred such measures have often taken a narrow approach to the meaning of ‘institution’ overly focused on largescale, older/heritage style residential buildings.²⁵ Other types of institutions—perhaps of a smaller physical scale or less distinctive architecture—have emerged where people remain segregated from the broader community and lack control over their living arrangements and autonomy over their bodies and lives. Disabled people describe experiencing these other kinds of living arrangements as ‘mini-institutions’ and continue to advocate for independent living and community inclusion.²⁶ Third, disabled people have not had their experiences listened to, acknowledged and redressed. The closed nature of institutions means ‘out of sight, out of mind’—there is a lack of general public awareness of disabled people’s experiences of institutionalization. Some disabled people’s experiences and perspectives are heard through their life stories²⁷ or those of their family members,²⁸ and through the work of Disabled People’s Organizations²⁹ and disability scholars.³⁰ However, disabled people’s voices are still often absent from policies on deinstitutionalization and decisions about redevelopment of former institution sites, and this is particularly acute for people with cognitive impairment, such as intellectual disability.³¹

In this unfinished project, institutionalization continues to permeate the present in three significant respects. First, design and delivery of new systems of housing and supports for disabled people reproduce institutionalization and its violence.³² Second, disabled people in institutions, and their families and communities continue to be marked by lasting effects of institutionalization, experiencing trauma, grief, anger, and loss which has gone unrecognized and unresolved.³³ Third, institutionalization permeates the present as an unacknowledged, unreckoned with and unredressed injustice. Governments, disability service providers, professional associations and unions, universities, and the broader community have failed to acknowledge their role in institutionalization and the full extent of wrongfulness and harm associated with institutionalization and to reckon with, redress, and repair this injustice.³⁴ To borrow from Maria Tumarkin (writing in the context of gendered violence) institutionalization remains an ‘open wound which refuses to scab, let alone heal’.³⁵

Article 19 of the CRPD provides for the right of disabled people to live independently in the community, to live where they choose, and to be supported to make that choice. Article 19 also requires community services and facilities are available on an equal basis to disabled persons as others and are responsive to their needs.³⁶ The CRPD Committee has noted States parties to the CRPD ‘must adopt a strategy and a concrete plan of action for deinstitutionalization’ and deinstitutionalization ‘requires a systemic transformation’.³⁷

2.1. Institutions, institutionalization and deinstitutionalization

‘Institutions’ are often defined in ‘bricks and mortar’ terms, having a particular physical and architectural character as largescale heritage-style buildings.³⁸ In turn, this contributes to the simplistic idea ‘deinstitutionalization’ is about closing buildings. The CRPD Committee’s interpretation of Article 19 challenges this approach. Its interpretation provides an understanding of ‘institutions’, ‘institutionalization’, and ‘deinstitutionalization’ in the context of the right to independent living and community inclusion and the broader suite of CRPD rights, including rights to equality and discrimination, equal recognition before the law, and liberty.³⁹

Instead of a singular, visual description of an institution, the CRPD Committee identifies a series of ‘defining elements of institutions or institutionalization’ that relate to how living space and personal support is organized, and relationships between individuals and those providing support within that space. These elements include congregation of disabled people, segregation from the community, shared support staff, shared or identical activities, lack of control over daily decisions, routine, and who one lives with, and supervision.⁴⁰

‘Institutionalization’ is defined by the CRPD Committee as ‘any detention based on disability alone or in conjunction with other grounds such as “care” or “treatment”’.⁴¹ The CRPD Committee uses the shorthand of ‘disability-specific detention’ to refer to institutionalization. Examples include social care institutions, psychiatric institutions, long-stay hospitals, nursing homes, secure dementia wards, special boarding schools, group homes, forensic psychiatric settings, and mental health settings.⁴²

‘Deinstitutionalization’ in its common usage refers to closure and decommissioning of largescale residential settings and movement of former residents into the community.⁴³ However, this is a narrow conception and has meant that other practices with similar effects have emerged that sit outside of the scope of government deinstitutionalization policies and are often seen as the inclusive and progressive alternative to institutions. Indeed, the CRPD Committee has noted in its 2022 Deinstitutionalization Guidelines: ‘persons with disabilities worldwide continue to be placed in institutions under life-threatening conditions’ and ‘deinstitutionalization processes are either not compliant with the Convention or are overdue’.⁴⁴ A narrow definition of deinstitutionalization as only closure and decommissioning constructs deinstitutionalization as having failed because disabled people ended up homeless and unsupported within the community and ‘transinstitutionalized’ in other settings such as prisons or hospitals, and thus is often the starting point for perversely justifying a return to institutions as the best option for disabled people.⁴⁵

In contrast, the CRPD Committee defines ‘deinstitutionalization’ much more broadly in terms of the conditions disabled people are departing from and the living and socio-political conditions they must arrive at: as ‘interconnected processes that should focus on restoring autonomy, choice and control to persons with disabilities as to how, where and with whom they decide to live’.⁴⁶ As such, deinstitutionalization includes: ‘full legal capacity, access to housing, support and service options that are accessible and enable persons to regain control of their lives’ and access to ‘individualized’ and ‘personalized’ support, ‘based on their own choices, that they may require to carry out daily activities and participate in society’.⁴⁷ Deinstitutionalization processes should be directed towards ‘restoring the dignity and recognizing the diversity of persons with disabilities’.⁴⁸ Disabled people and their representative organizations should lead deinstitutionalization processes, with particular priority given to ‘the views of persons leaving institutions and survivors of institutionalization’.⁴⁹ Family members should only be involved in deinstitutionalization with the ‘express consent’ of a disabled person,⁵⁰ and ‘those involved in managing or perpetuating institutions’ must not lead deinstitutionalization.⁵¹ I now turn to the role of truth-telling in deinstitutionalization.

2.2. Deinstitutionalization and the call for redress

Part IX of the Deinstitutionalization Guidelines is titled ‘Remedies, reparations and redress’. This part provides that systems of redress should be available that recognize ‘all forms of human rights violations caused by the institutionalization of persons with disabilities’.⁵² The Deinstitutionalization Guidelines also identify establishing truth commissions ‘to investigate and promote public understanding of all forms of institutionalization and the full scope of harm caused to past and present survivors’ and to ‘address the social harm inherent in historical policies that maintained systems of institutionalization of persons with disabilities’⁵³ (`deinstitutionalization truth commissions'). Moreover, the Deinstitutionalization Guidelines provide that provision of information about truth commissions and opportunities for participating in these must be part of preparing for individuals leaving institutions.⁵⁴ The CRPD Committee clarifies that reparations and truth commissions are additional to ‘the obligation of States parties to investigate and prosecute perpetrators of violence and abuse against persons with disabilities under applicable domestic legislation and international human rights law’.⁵⁵

The proposal for deinstitutionalization truth commissions and reparations, remedies and redress more broadly intersects with human rights pertaining to access to justice. Article 13 of the CRPD provides for the right to equal access to justice. The International Principles and Guidelines on Access to Justice for Persons with Disabilities provide (non-binding) guidance to States Parties in relation to Article 13. Guideline 8 stipulates States Parties should ensure that ‘effective remedies are in place for human rights violations, including the right to be free from disability-based discrimination and the rights to restitution, compensation, rehabilitation, satisfaction and guarantees of non-repetition’. These remedies should be ‘enforceable, individualized and tailored to meet the needs of claimants … [e]nsure that victims are protected from repeat violations of their human rights … [and a]ddress the systemic nature of human rights violations’.⁵⁶ Looking beyond the CRPD, Article 9 of the International Covenant on Civil and Political Rights provides that individuals who are deprived of liberty are entitled to go to court to seek release from detention, and victims of unlawful detention ‘shall have an enforceable right to compensation’. Moreover, a state party is required pursuant to Article 14.1 of the Convention Against Torture to ‘ensure in its legal system that the victim of an act of torture obtains redress and has an enforceable right to fair and adequate compensation, including the means for as full rehabilitation as possible’.

3. EMERGING DISABILITY TRUTH-TELLING PRACTICES

This section begins with a general introduction to truth, truth-telling and truth commissions. Truth-telling and truth commissions are not unproblematic, and here I introduce key benefits and challenges of these practices, which I then revisit in the disability context in Section 4. Next in Section 3 I present a range of diverse examples of truth-telling practices related to disability-specific injustice, (albeit with a particular focus on English language jurisdictions and not a systematic global review). Information about these examples is current at November 2023 at the time of writing the article, with some minor updates since that time.

Three observations can be made. First, disability truth-telling is a nascent field of practice with many of the initiatives having only emerged in the last decade. Second, disability truth-telling initiatives are not a global phenomenon, with the majority of those featured in this section based in North America. Third, the majority of the disability truth-telling initiatives are community-led. Official truth commissions are in the minority, with only one government-led initiative focusing on institutions.

3.1. Truth, truth-telling and truth commissions

The need for truth is apparent at multiple levels: victims and their families need truth for ‘existential reasons’ in the sense of ‘necessary for the continued existence of the survivors’⁵⁷ and the public needs truth ‘as a means of ensuring transparency, ending impunity and protecting human rights’.⁵⁸ The ‘right to truth’ in international human rights law consists of obligations on the state to: ‘ascertain the political and administrative structure that allowed for the abuse to take place’ (‘structural truth’), investigate the fate of individual victims (‘individual truth’), and provide victims the opportunity to tell their story and be heard (‘narrative truth’).⁵⁹ Truth-seeking involves surfacing and investigating the circumstances of human rights abuses. Truth-telling is an aspect of ‘narrative truth’. Truth-telling refers to ‘testimonies by witnesses, victims, and offenders’.⁶⁰ Truth-telling is both backward looking and forward looking because it facilitates accountability for past wrong and commitment to prevent future repetition of those wrongs.⁶¹

Truth commissions are risky, high stakes and, if not well-designed, can fail despite the best of intentions thus ‘entrenching a cycle of reparative failure which undermines hope, fuels cynicism and delays recovery’.⁶² Sharing one’s story can be a harmful experience:⁶³ ‘just revealing is not healing’.⁶⁴ Truth-telling opens new sites of conflict over what constitutes the ‘truth’ and can force people into binary categories of victim and perpetrator. Truth-telling processes can exclude communities who are most marginalized,⁶⁵ and those who offer counter- or difficult narratives to the privileged and legitimizing narratives that align with nation-building goals.⁶⁶ Truth-telling can form part of a preliminary step to reparations.⁶⁷ Truth-telling can also form part of reparations. The Basic Principles and Guidelines on the Right to a Remedy and Reparation for Victims of Gross Violations of International Human Rights Law and Serious Violations of International Humanitarian Law (‘van Boven Principles’) provide (non-binding) guidance on redress and support for victims-survivors of violence that constitute gross violations of human rights. The van Boven Principles identify five categories of reparations: restitution, compensation, rehabilitation satisfaction, and guarantees of non-repetition. Truth-telling is utilized in ‘satisfaction’ reparations directed towards maintaining public awareness of gross human rights violations, such as through public apology or commemoration.⁶⁸

Truth-telling can take place in different forums, including official truth commissions, as well as community-led practices.

3.1.1. Truth commissions

Truth commissions have been defined as consisting of five elements:

A truth commission (1) is focused on the past, rather than ongoing events; (2) investigates a pattern of events that took place over a period of time; (3) engages directly and broadly with the affected population, gathering information on their experiences; (4) is a temporary body, with the aim of concluding a final report; and (5) is officially authorised or empowered by the state under review.⁶⁹

In contrast to judicial processes, truth commissions explore roles of political leaders, legal systems and bureaucracies in gross human rights violations, and make recommendations for institutional and legal reform to prevent further harm.⁷⁰ In this way, ‘truth commissions have the potential to offer an authoritative investigation of both the events and politico-social structures that led to atrocity’, including articulating ‘[p]atterns of abuse, state involvement and responsibilities of various parties’.⁷¹

Participation in truth commissions can support individual healing, particularly because they provide an opportunity for victims to tell their story and be listened to.⁷² However, participation can also result in re-traumatization, including by recalling distressing events or as a result of perceptions the commission is biased towards perpetrators.⁷³ Moreover, ‘[t]he central aim of a truth commission is not therapy’ but, rather, to ‘gather as much detailed information from the greatest number of victims as possible to allow an accurate analysis of abuses over a period of time’.⁷⁴ Truth commissions are collective in nature and will not necessarily facilitate opportunities for an individual to impart all of their life experiences, nor provide a process to gather detailed information of each individuals’ specific experience.⁷⁵ The collective context of truth commissions can raise issues concerning whose ‘truth’ (ie whose version of the past) is the focus of exploration, particularly because long-term and intergenerational conflict can create diverse and contradictory ‘truths’.⁷⁶

A truth commission’s final report can provide impetus for further investigations, prosecutions and reparations.⁷⁷ Truth commissions can be an end in themselves and foundation for reparations, insofar as they respond to ‘victims’ needs for broader acknowledgement of what happened’ which are not necessarily satisfied by reparations payments alone.⁷⁸ Truth commissions can ‘open up discussion of structural change’,⁷⁹ although they can also be vehicles for enforcing social hierarchies and norms if they produce and maintain power relations and do not re-assess broader questions of social relations.⁸⁰ For example, truth commissions are criticized for failing to capture differences and nuances in women’s experiences of conflict and, in turn, excluding their aspirations and needs from recommendations.⁸¹ Truth commissions are also criticized for ‘reinforcement of colonial idealization’.⁸²

3.1.2. Community-led truth-telling

Community-led truth-telling practices are also utilized by victim-survivors and their families, and allies, including in the absence of or due to limitations of official truth-telling processes.⁸³

Community-based truth commissions are ‘a forum for justice in situations where more traditional forms of justice (that is, criminal justice) have failed, had limited effect, or been inaccessible or unavailable’ in order to address issues of social injustice and human rights violations.⁸⁴ Community-based truth commissions ‘have been used to drive social, cultural, economic and political change’ and respond to ‘personal direct violence that has not been adequately remedied through criminal justice mechanisms’, as well as ‘ongoing structural violence and embraced campaigns for social and economic justice’.⁸⁵ Community-based truth commissions are led by civil society, and there is no state funding or state involvement.⁸⁶

Artistic practice can serve as a medium of expression and form of communication that conveys complexity of people’s experiences of suffering and harm⁸⁷ and ‘opens up a space where many different truths can be expressed and explored’.⁸⁸ Place-based memory projects, sometimes referred to as ‘sites of conscience’, involve practices on or connected to a specific place in order to use the geography and materiality of place to prompt grounded understanding of and dialogue on gross human rights violations and their relationship to the present. They are often led by survivors, or their communities and allies.⁸⁹

3.2. Government-led disability truth-telling practices

In this section and the following Section 3.3 I describe some examples of disability truth-telling initiatives. I take an expansive approach to truth-telling which is not limited to official truth commissions. Design and operation of these initiatives might provide models and good practice and points of caution to inform development of deinstitutionalization truth commissions in the context Article 19 of the CRPD. Thus, the descriptive overview in this section provides a background to subsequent critical discussion in Section 4 of key conceptual and practical considerations that can inform development of a Disability Truth and Repair Framework.

3.2.1. Disability truth-seeking and truth-telling

In 2023 the Massachusetts (USA) government established the Massachusetts Commission on the History of State Institutions for People with Developmental and Mental Health Disabilities in the Commonwealth. The commission will produce an official, publicly available and accessible report by June 2025 on the history of institutions in Massachusetts and recommendations for policy change.⁹⁰ The commission will analyse existing institutional records to produce an official history, examine former resident, family and community access to institutional records, compile information on burial locations of former residents (including unmarked graves), and develop a framework for public recognition of institutionalization including and memorialization.⁹¹ There are two disabled co-chairs of the commission—one who identifies with ‘intellectual or developmental disability’ and the other who identifies with a ‘mental health or behavioral health condition’.⁹²

In 2022 the Vermont General Assembly (USA) passed legislation to create a truth and reconciliation commission on institutional, structural, and systemic discrimination.⁹³ The commission is ‘examin[ing] and begin[ning] the process of dismantling institutional, structural, and systemic discrimination in Vermont, both past and present, that has been caused or permitted by State laws and policies’, as well as establishing a public record of that discrimination and ‘identify[ing] potential actions that can be taken by the State to repair the damage’ caused by that discrimination and ‘prevent the recurrence of such discrimination in the future’.⁹⁴ The commission will focus on experiences of specific marginalized populations and communities in Vermont, including ‘individuals with a physical, psychiatric, or mental condition or disability’ and their families.⁹⁵ By June 2026 the commission will produce a final report with recommendations for eliminating ongoing instances of institutional, structural, and systemic discrimination and addressing harm caused by that discrimination.⁹⁶ Commissioners will develop the scope and objectives of the commission in consultation with the specified marginalized populations and communities, as well as other ‘interested parties’ such as ‘historians, social scientists, experts in restorative justice’.⁹⁷ A series of committees will represent the specified marginalized populations and communities.⁹⁸

3.2.2. Government inquiries into institutional abuse

There are government inquiries into institutional abuse. While these cannot be categorized as official truth commissions, such government inquiries are recognized by some scholars as serving a truth-telling function.⁹⁹

In Aotearoa New Zealand, the Royal Commission of Inquiry on Abuse in Care was established in 2018 to investigate State and faith-based care in Aotearoa New Zealand between the years 1950–99 with a particular focus on Māori, Pacific People and disabled people in care. The commission explored ‘why people were taken into care’, ‘what abuse happened and why’, and ‘effects of the abuse’.¹⁰⁰ The commission made its final recommendations in June 2024, including in relation to redress.¹⁰¹ Its final report included case studies on a number of institutions.¹⁰² One of the four commissioners is disabled and a former Disability Rights Commissioner at Aotearoa New Zealand’s Human Rights Commission.¹⁰³

The Danish Ministry of Social Affairs and Senior Citizens requested and financed a historical investigation on institutions by the Danish Welfare Museum (Danmarks Forsorgsmuseum).¹⁰⁴ This Museum is located on the site of a former ‘poorhouse’. In 2022, the Museum published a report on its ‘historical investigation of special and mentally handicapped welfare 1933-1980’, which examined ‘whether there were children, young people and adults who were exposed to neglect or abuse while staying in special and mentally ill institutions under state custody in the period 1933-1980’. The Museum’s website provides access to teaching resources aimed at developing awareness of and critical reflection upon contemporary legislation and professional practice.¹⁰⁵ The website also includes a subtitled free-access film detailing some individuals’ experiences.¹⁰⁶

In Australia the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability was established in 2019 to investigate how to prevent and better protect disabled people from violence, abuse, neglect and exploitation, as well as best practice in responding to violence, abuse, neglect and exploitation and how to promote a more inclusive society for disabled people.¹⁰⁷ The commission published its final report in September 2023.¹⁰⁸ Two of its five commissioners are disabled, and it had a range of accessibility measures for communication of its reports and for engaging disabled people in making submissions and appearing at public hearings.¹⁰⁹ The Australian Disability Royal Commission follows an earlier Royal Commission into Institutional Responses to Child Sexual Abuse that published its final report in 2017.¹¹⁰ This earlier commission included a specific case study on disability service providers,¹¹¹ although the commission’s overwhelming focus was mainstream child welfare, religious and educational settings.

3.2.3. Truth and eugenics sterilization redress

There are truth-telling initiatives specifically in relation to sterilization of disabled people, primarily in Northern Europe¹¹² and North America. In this section I survey examples of truth-telling dimensions of North American state/provincial official apologies and monetary payments to disabled victim-survivors of eugenics sterilization, albeit none of these include an official truth commission on sterilization or eugenics.¹¹³

In the late 1990s the Alberta (Canada) provincial government provided compensation to victim-survivors of eugenics sterilization in the context of two settlements. Leilani Muir brought a successful lawsuit against the Alberta provincial government in relation to her sterilization under eugenics legislation. Subsequent litigation by two groups of sterilization victim-survivors resulted in settlements in 1998 and 1999.¹¹⁴ The government also held the inaugural Alberta Eugenics Awareness Week in 2011,¹¹⁵ during which the mayor of Edmonton declared 23 October ‘Remembering the History of Eugenics in Alberta Day’.¹¹⁶

Following a 2003 apology by the Californian Governor for California’s eugenic sterilization program¹¹⁷ and years of advocacy by California Latinas for Reproductive Justice and other groups,¹¹⁸ in 2022 the Californian government introduced a sterilization compensation program. The program provided compensation for individuals sterilized between 1909 and 1979 in institutions¹¹⁹ and women who were sterilized while in state prisons¹²⁰ whose sterilization ‘was not medically necessary, it happened without demonstrated informed consent, or it was performed for the purposes of birth control’.¹²¹ Additional to monetary payments for victim-survivors, there is $1 million USD for ‘markers or plaques at designated sites that acknowledge the wrongful sterilization of thousands of vulnerable people’.¹²²

3.3. Community-led disability truth-telling initiatives

Disabled people and their families and allies have led truth-telling initiatives, often in a context of absence of official truth commissions. Sites of conscience of former institutions include the site of the former Dorothea Dix Hospital in North Carolina (USA)¹²³ and the site of the former Southwell Workhouse and Firbeck Infirmary (England).¹²⁴ In Massachusetts (USA) and Minnesota (USA) there are community initiatives to locate and document institutional burial sites and maintain these sites and research the lives of individuals buried for relatives and the broader community.¹²⁵ Memoirs and theatre performances provide testimony of lived experiences of institutionalization from the perspective of disabled people¹²⁶ and their family members.¹²⁷ Online public resources on institutions and lived experiences of institutionalization include interactive maps of former institution sites¹²⁸ and videos providing first person accounts of institutionalization.¹²⁹

Descendants, families, communities and nations of individuals from Native nations institutionalized in the Canton Asylum for Insane Indians (USA) engage in diverse rituals and practices to commemorate those individuals. Examples include quilt making, organized walks, drumming and prayers, storytelling and public speaking at onsite honouring ceremonies.¹³⁰

Museums also play diverse roles in community-led truth-telling. Johannesburg Holocaust and Genocide Center (South Africa) has provided a space for family support and community education in the aftermath of the death of 144 disabled people at Life Esidimeni mental health facilities,¹³¹ including an academic conference drawing eugenics connections between the Nazi state and Life Esidimeni.¹³² A 2020 exhibition ‘Into the Light: Living Histories of Oppression and Education in Ontario’ held at Guelph Civic Museum (Canada) explored ‘local histories and ongoing legacies’ of eugenics at intersections of ableism, racism and settler colonialism, in a context where the Macdonald Institute and the Ontario Agricultural College in Guelph had a leading role in eugenics research and pedagogy.¹³³

4. CONCEPTUAL AND PRACTICAL CONSIDERATIONS

In this section I identify conceptual and practical considerations regarding future deinstitutionalization truth commissions, complementing empirical research engaging directly with disabled people, drawing on aspects of the disability truth-telling initiatives and the general criticisms of truth-telling and truth commissions discussed in Section 3. These considerations are identified by reference to concepts and analysis at the intersections of two bodies of scholarship not previously brought into conversation: philosophical scholarship on moral repair and critical disability studies scholarship on institutions. Conceptual and practical considerations discussed in this section cluster around three themes: structures and temporalities of injustice, recognition of injustice, and repair of injustice.

4.1. Structures and temporalities of injustice

Defining and delineating the scope of injustice the focus of deinstitutionalization truth commissions forms a first set of conceptual and practical considerations to inform the Disability Truth and Repair Framework.

4.1.1. Casting institutions in the past?

Moral repair scholars complicate the possibility of injustice to remain fixed in the ‘past’. They highlight two features of injustice: temporally, injustice remains active in the present and shapes social experience and current justice struggles, and structurally, injustice endures in how society and systems are organized and in interpersonal and community relations.

‘Historical injustice’ is defined by Margaret Urban Walker as ‘long-running and still-running eras of unjust treatment’ of certain peoples or groups¹³⁴ that includes situations where ‘some groups or peoples have been persistently denigrated, subordinated, … or excluded by other groups or peoples.¹³⁵ There are three implications of understanding injustice as historical injustice. One is that an impacted community continues to live with the historical injustice.¹³⁶ The second respect is that failure to recognize and remedy the historical injustice keeps those wrongs alive and ‘grossly distorts’¹³⁷ relations between individuals and groups.¹³⁸ Third, continued impact of historical injustice gives rise to responsibility to address that injustice: ‘responsibility for the past as the living present’.¹³⁹ Iris Marion Young describes ‘structural injustice’ as a kind of moral wrong incapable of being attributed to a specific perpetrator or the specific actions or policies of the state or other institutions. Instead, structural injustice has more diffused, widespread and long-term dynamics grounded in social, political and legal structures.¹⁴⁰ Structural injustice ‘exists when social processes put large groups of persons under systematic threat of domination or deprivation of the means to develop and exercise their capacities, at the same time that these processes enable others to dominate or to have a wide range of opportunities for developing and exercising capacities available to them.’¹⁴¹

Truth commissions are, by the definition quoted in Section 3.1.1, ‘focused on the past, rather than ongoing events’.¹⁴² As such, truth commissions risk serving an active role in preventing recognition of continuities of injustice into the present, by temporalizing injustice as a historical phenomenon or only focusing on current impacts of historical practices and excluding from their scope continuities of those practices in the present.¹⁴³

As an ‘open wound’ institutions (coupled with the ‘unfinished project’ of deinstitutionalization) continue to shape present day social experience, individual and community relations, and government policy and systems for disabled people, as was discussed in Section 2. Thus, a key consideration in developing a Disability Truth and Repair Framework is the definition and scope of the injustice of institutions—whether this extends to how injustice of institutions continues to shape present day experience and systems and dynamics through which the injustice of institutions endures and evolves over time. Failure to pay careful attention to the definition and scope of injustice can risk casting institutions as a historical phenomenon disconnected to the present, and thus further entrench rather than alleviate their ongoing impacts on disabled people.

There are various ways this historicization and entrenchment might occur. Other institutions—perhaps of a smaller physical scale or less distinctive architecture—commonly emerge in the aftermath of institutions closing but are not always apparent as such because their development is couched in progressive and inclusive narratives.¹⁴⁴ This is apparent in many nations where group homes and cluster housing has emerged in the aftermath of closure of larger residential settings. A progressive narrative is often associated with deinstitutionalization—that institutions are a part of a ‘dark past’ in contrast to a present enlightened era of inclusion.¹⁴⁵ Indeed, many older disability service charities have engaged in inclusive and empowering re-naming and re-branding which distances these organizations from their role in institutions.¹⁴⁶

Institutions might also endure in ways that lack the same physical spatial and architectural form characteristic of institutions. Chapman et al advance the concept of the ‘institutional archipelago’¹⁴⁷ to represent the range of systems and spaces through which disabled people experience coercion and control.¹⁴⁸ In building on this work, other critical disability studies scholars have explored how institutionalization might take a non-architectural form and occur through legal, medical and other controls exercised directly or internally over an individual by reason of being diagnosed or labelled as disabled such that the body itself becomes the ‘institution’.¹⁴⁹ Thus, deinstitutionalization truth commissions might entrench a particular material understanding of institutions which marginalizes these other forms of segregation and control of disabled people.

Institutions for disabled people are not always ‘disability-specific’. Out of home care residential settings, and youth and adult prisons are core sites where disabled people (particularly those who are Indigenous, racialized and poor) are congregated and detained.¹⁵⁰ People with intellectual disability who are themselves shaped by their own lived experiences have diverse understandings of what constitutes an ‘institution’, including juvenile detention and prisons.¹⁵¹ Deinstitutionalization truth commissions must avoid creating a hierarchy of justice between disabled people in disability-specific institutions and those in prisons and other mainstream carceral settings (who are more likely to be First Nations, racialized or poor disabled people¹⁵²) which is a risk if the scope of deinstitutionalization truth commissions is too narrowly delineated.

Additional to disabled people’s experiences of injustice within institutions, a Disability Truth and Repair Framework must recognize the very existence of institutions constitutes a foundational injustice.¹⁵³ Deinstitutionalization truth commissions will risk legitimating institutions if they narrowly focus on specific interpersonal harms within institutions. This has been a criticism of the Australian Institutional Child Abuse Commission which focused on sexual abuse within child welfare institutions but did not engage with the broader issue of institutionalization.¹⁵⁴ Relatedly, many individuals—particularly who are First Nations, racialized or poor—who have been institutionalized have become disabled through state violence, including that related to settler colonialism, colonialism, and imperialism.¹⁵⁵ Deinstitutionalization truth commissions risk ignoring and thus legitimating the structural contexts of disablement impacting disabled people who are institutionalized. For example, while the Massachusetts and Vermont commissions both have a focus on continuities of practices in the present, the extent these interrogate present day practices cloaked in inclusion and empowerment or violence and discrimination giving rise to disablement itself remains unclear. Thus, Deinstitutionalization truth commissions that historicize institutions will not address broader present-day material circumstances of individuals and communities, and the structural conditions that shape these.¹⁵⁶

4.1.2. Entrenching ableism?

Kathrin Braun proposes a distinctive type of injustice: ‘injuries of normality’. ‘Injuries of normality’ refers to ‘systematic harm inflicted on people categorized as abnormal, deviant, deficient or inferior with respect to norms and standards of health, fitness, functionality, productivity and usefulness’.¹⁵⁷ ‘Injuries of normality’ mark out certain social groups as being abnormal (that is, deviating from standards of normality) and an obstacle to the improvement of the collective (that is, society or nation). The norms through which social groups are marked out as abnormal can ‘be deeply entrenched in social, political, cultural or legal practices, institutions, discourses and thought systems, so much so that practices and policies of enforcing them are largely considered normal by contemporaries, even if they involve grave harm to those who are targeted’.¹⁵⁸ ‘Injuries of normality’ might not be officially recognized in political and legal processes of societal transformation that respond to past wrongs because there is a failure to acknowledge the underlying biopolitical rationality of normality that enabled those wrongs—this rationality being considered ‘normal rather than wrong’. In turn the inferior worth of social groups marked as abnormal provides an enduring justification both for continued oppression of members of those groups and failure to recognize and repair past wrongs perpetrated against those groups.¹⁵⁹

A focus in deinstitutionalization on ending the material dimensions of institutions can overlook continuing cultural dimensions of institutions—notably ableism and eugenics—which can then travel through into alternative purportedly progressive living arrangements such as group homes and other systems of carceral control such as criminal justice and child welfare.¹⁶⁰ Development of a Disability Truth and Repair Framework must engage with ableism underpinning institutionalization and challenge the biopolitical rationality that positions disabled people as unfit and violable. Ableism can manifest in supports and accommodation, and in legal frameworks that continue to enable violence characteristic of institutions. For example, sterilization of disabled people (a practice commonly associated with institutionalization) continues to be practiced and is legal in many jurisdictions where deinstitutionalization has occurred, having a particular impact on disabled women.¹⁶¹ Moreover, discourses of the ‘ideal victim’¹⁶² might marginalize disabled people who are Indigenous, racialized, poor, use drugs or are criminalized, this being particularly pronounced for multiply marginalized disabled women.¹⁶³ The Vermont Commission’s focus on institutional, structural, and systemic discrimination might lend itself to exploring cultural dynamics of ableism. In contrast, the Australian Disability Royal Commission has been criticized by disabled people’s organizations for not interrogating ableism and segregation.¹⁶⁴

The scope and types of injustice recognized must also reflect diversity of experiences and impacts and how these intersect with other dynamics of oppression. For example, reproductive and sexual violence in relation to disabled women and separation from Country and culture in relation to First Nations disabled people.

4.1.3. Overlooking settler colonialism, colonialism, and imperialism?

Truth commissions have been criticized for excluding those who offer counter or difficult narratives that challenge privileged and legitimizing narratives that align with nation-building goals¹⁶⁵ and for working within narrow definitions of injustice that do not recognize intersecting oppression.¹⁶⁶ Drawing on Young, Jennifer Balint et al refer to colonialism as a key structural injustice in settler colonies because ‘the resilience of colonial forms of knowledge and forms of social, political, and legal arrangements … continue to influence global and national relations and affect the life experiences and aspirations of the groups and individuals they encompass.’¹⁶⁷

Institutionalization and the logics of fitness are central to settler colonial, colonial and imperial nation-building and to dispossession, violation and genocide of disabled First Nations people.¹⁶⁸ Development of a Disability Truth and Repair Framework must avoid focussing on disability-specific injustices and not considering intersections with other systems of oppression, notably settler colonialism, colonialism and imperialism.¹⁶⁹ Institutions themselves might be located on Indigenous land, and use of land for institutions might have been part of the process of displacement and maintaining dispossession of First Nations people. Failure to address these dynamics will render deinstitutionalization truth commissions a missed opportunity to reckon with settler colonial, colonial and imperial violence, dispossession and genocide and, conversely, fail to support First Nations self-determination and nation building. These risks are potentially exacerbated by the CRPD and the CRPD Committee’s interpretation of the CRPD which does not explicitly consider deinstitutionalization in relation to First Nations disabled people, including living on Country, restoration of land, and access to First Nations culture, nor the broader issue of First Nations sovereignty.¹⁷⁰ Consideration should be given to how truth commissions can reproduce settler colonial, colonial and imperial domination and violence through their centralized leadership which concentrates control in the nation state and also dis- or un-places injustice from its local specificities and connection to land.¹⁷¹

Of the two government-led initiatives discussed in Section 3.2.1, the Massachusetts Commission’s legislation does not specifically identify settler colonialism, First Nations or racial dynamics as a focus of consideration. In contrast, the Vermont Commission focuses on First Nations, racialized minorities and disabled people, and eugenics (a cross-cutting concept) has been identified as a key issue for the commission to consider.¹⁷² The Australian Disability Royal Commission had a specific focus on First Nations people with disability, including commissioning specific research on First Nations disability truth-telling¹⁷³ and public hearings focused on First Nations disabled people’s experiences of incarceration and child removal.¹⁷⁴

4.2. Recognizing injustice

Acknowledging institutions as unjust, particularly by listening to lived experiences of disabled people, forms a second set of conceptual and practical considerations to inform a Disability Truth and Repair Framework.

4.2.1. Denial through benevolence?

A record of the truth of gross human rights violations which is publicly acknowledged and the process through which this truth is established are recognized as foundational to moving forward.¹⁷⁵ Listening and acknowledging victim-survivors’ experiences can also facilitate dehumanization and development of trust.¹⁷⁶

However, gross human rights violations are often subject to what Stanley Cohen refers to as ‘collective denial’, that is, a ‘mode of forgetting by which a whole society separates itself from its discreditable past record’.¹⁷⁷ Additional to preventing delivery of substantive justice for violations themselves, collective denial also gives rise to a further form of injustice: ‘epistemic injustice’.¹⁷⁸ According to Miranda Fricker, ‘epistemic injustice’ refers to a lack of collective resources to acknowledge experiences as unjust and relates to who is granted social and political recognition as knowers of their experiences. There are two forms of epistemic injustice. ‘Testimonial injustice’ refers to a hearer granting less credibility to a speaker to articulate their experiences of harm by reason of the hearer’s prejudice. ‘Hermeneutical injustice’ refers to ‘a gap in collective interpretive resources’ to make sense of an individual’s experiences, that is, there is a lack of shared vocabulary and understanding that certain experiences are harmful per se by reason of the marginalization of disadvantaged individuals in the generation of social meaning.¹⁷⁹

Failure to recognize injustice constitutes abandonment of an individual by society. Jill Stauffer uses ‘ethical loneliness’ to refer to ‘the experience of having been abandoned by humanity compounded by the experience of not being heard’.¹⁸⁰ Ethical loneliness is a condition that occurs for individuals who are ‘unjustly treated and dehumanised by human beings and political structures, who emerge from that injustice only to find that the surrounding world will not listen to or cannot properly hear their testimony – their claims about what they suffered and about what is now owed them – on their own terms’.¹⁸¹ In a similar vein, Walker refers to ‘second injury’ as the practice of the community to which an individual turns to for validation and vindication of their experience and its wrongfulness engaging in ‘normative abandonment’ of that individual. ‘Normative abandonment’ undermines the shared rules of right and wrong which individuals should be able to trust will guide others’ behaviour and thus protect them from harm. Impacts of normative abandonment grow—rather than recede into the distant past—with each generation because new generations inherit the ongoing impacts of the historical injustice.¹⁸²

Institutions and institutional violence are often viewed as benevolent, protective and beneficial to disabled people, rather than harmful.¹⁸³ This common understanding can be understood as ‘collective denial’ that might impede the capacity of deinstitutionalization truth commissions to fully reckon with ongoing injustice of institutions. In turn, disabled people might experience ‘hermeneutical injustice’ because this collective denial amounts to failure to provide interpretive resources for themselves and society to understand these experiences as unjust, and thus disabled people remain in a state of dehumanization. Further, violence might be so normalized in institutions and disabled people might be so deprived of any education around their rights that they might not be aware they have experienced injustice.¹⁸⁴ The absence of systematic engagement by governments, charities, professionals and broader society with truth-telling in relation to institutions is indicative of the deeply entrenched failure to accept there is any injustice requiring a reflective and atoning response.

Collective denial manifests in multiple ways. The role of charities in operating institutions might contribute to benevolence of institutions because charities are by legal definition and social understanding focused on alleviating suffering.¹⁸⁵ Further, professional pedagogical and ethical frameworks centred on care contribute to the innocence of legal, health and social work professionals, thus denying their involvement in perpetration of institutional injustice.¹⁸⁶ And, for the broader community, these legal and social discourses of benevolence and care might encourage a nostalgia about institutions. Participation of charities in deinstitutionalization truth commissions must be carefully considered and include a focus on critically exploring the impacts of their association with benevolence and paternalism. Participation of professionals in deinstitutionalization truth commissions will need to involve interrogating these frameworks and creating a space for professionals to self-reflect on the ‘innocence’ associated with their professional identity.¹⁸⁷ The museum initiatives discussed in Sections 3.2 and 3.3 provide examples of how such reflective engagement might be facilitated.

4.2.2. Failing to listen to and believe disabled truth-telling?

Gross human rights violations are often accompanied by ongoing refusal to recognize the authority of marginalized individuals and their communities to know and articulate experiences of that harm—to be listened to and have their experiences believed and recognized. Truth commissions can serve an important role in validating victim survivors’ experiences.¹⁸⁸ However, acknowledging and reckoning with the truth of past mass harm requires a receptive audience. Otherwise, as Stauffer argues, there can be a difference between what is said and what is heard, and the process of establishing the truth can itself be harmful.¹⁸⁹ A failure for an individual to feel heard can ‘undermine the sense of inhabiting a shared world for the speaker’.¹⁹⁰ To ensure appreciation of the depth of experience of harm and its implications for individuals and communities in the present, the audience to truth-telling ‘needs to be open to being interrupted, to hearing something other than what she expected.’¹⁹¹ The audience to truth has ‘a responsibility to hear well. But they may have conscious or unconscious resistances to hearing well’.¹⁹² ‘Listening’,¹⁹³ as opposed to merely hearing, requires respect, reflexivity and openness: ‘where what is said might be heard even if it threatens to break the order of the known world for those who listen.’¹⁹⁴

Truth commissions come with risks of re-traumatization and exploitation of people’s stories and lived experience.¹⁹⁵ These risks of re-traumatization might be particularly significant in relation to disabled women, noting the broader phenomenon of re-traumatization of sexual violence survivors in justice systems. Some disability rights activists have questioned the impacts of the Australian Disability Royal Commission’s failure to listen to and act on disabled people’s lived experiences shared by the commission.¹⁹⁶ As such, development of a Disability Truth and Repair Framework will need to pay particular attention to how epistemic privilege shapes listening to disabled people’s truth-telling.

Ableism and denial of legal capacity shape how society disregards experiences of violence and other injustice against disabled people, in turn giving rise to testimonial injustice.¹⁹⁷ Disabled people (particularly people with intellectual disability and dementia) are often positioned as non-agential, non-communicative, vulnerable and in need of protection such that they are denied status as political actors who can articulate their experiences of harm. Disabled people’s expressions of distress and resistance can be subverted and read as challenging or dangerous behaviour pathologically associated with their disability.¹⁹⁸ Disabled women’s experiences can be dismissed by reason of the compounding of ableist and sexist assumptions about their purported irrationality and dishonesty.¹⁹⁹ The expert ‘truths’ of professionals might be privileged over the voices of disabled people, particularly given disability is conventionally understood through health, legal and social work experts and knowledge. As Alex Green observes, in the context of the Massachusetts Commission, people with intellectual disability are denied status as knowers of their own history, and thus ‘truth in disability history is the province of nondisabled people’.²⁰⁰

Disabled people’s communication can be marginalized or silenced when it does not fit normative ideas of verbal English language.²⁰¹ As such, there is a risk disabled people will experience testimonial injustice from not having their truth-telling listened to where ableist language and communication norms are not also challenged by a Deinstitutionalization Truth Commission. There must be multiple forms of communication beyond verbal English language for disabled people to participate in truth-telling. To this end, some of the initiatives discussed in Sections 3.2.1 and 3.2.2 have accessibility and inclusion frameworks.

Disabled people’s experiences, lives and selves are often framed through medical and scientific knowledge which can then centre the legitimate knowers of their experiences as those in positions of professional expertise or institutional authority.²⁰² This is compounded by disability-specific legal frameworks such as mental health law and guardianship law that appoint third parties to make decisions about disabled people’s bodies and lives.²⁰³ Thus, development of a Disability Truth and Repair Framework must involve challenging these epistemic frameworks as a foundation to deinstitutionalization truth commissions being able to centre disabled truth-telling, and ultimately reconstructing epistemic frameworks driven by disabled people’s diverse lived experiences and worldviews.

First Nations disabled people have different epistemologies and ontologies and this informs their understandings and experiences of disability²⁰⁴ and of institutionalization and its impacts.²⁰⁵ Thus, a Disability Truth and Repair Framework will need to be open to different paradigms of disability and institutionalization, and resist filtering lived experience through a white, western framework.²⁰⁶

4.2.3. Inaccessible processes?

Information and processes need to be in accessible formats, such as Easy Read. While accessible formats are a common feature of some of the initiatives discussed in Sections 3.2.1 and 3.2.2, they are not apparent in the eugenics sterilization redress initiatives discussed in Section 3.2.3.

Institutions are a sensitive and complex topic for disabled people and their family members²⁰⁷ such that deinstitutionalization truth commissions must be trauma-informed. Moreover, First Nations disabled people must have access to trauma-informed and culturally safe truth-telling.²⁰⁸

A Disability Truth and Repair Framework must be open to different approaches to history informed by different epistemologies and ontologies and to the ways settler colonialism, colonialism and imperialism shape the government archives. First Nations disabled people and their families and communities might have different ways of recording and recounting history and life stories.²⁰⁹ Moreover, western archives and archival methods are a product of settler colonialism, colonialism and imperialism and thus can be a source of epistemic injustice.²¹⁰ A Disability Truth and Repair Framework must also be open to how different cultural contexts in non-western nations shape official archival practices, including exploring alternative truth-seeking practices in nations that do not engage in systematic government archiving.²¹¹

4.2.4. Disability leadership

Development of a Disability Truth and Repair Framework must centre disabled people’s leadership and governance of deinstitutionalization truth commissions.²¹² Moreover, the framework must also foreground and celebrate disabled people’s practices of mobilization, agency and resistance.²¹³ Thus, deinstitutionalization truth commissions must avoid replicating the paternalistic and oppressive power dynamics disabled people are subjected to in institutions, and more broadly avoid positioning disabled people as passive victims.²¹⁴ Literature on disability inclusive practice, including that co-authored by people with intellectual disability, highlights importance of participation of disabled people in decision-making and governance roles.²¹⁵ Some of the initiatives described in Section 3 have disabled commissioners (for example, Massachusetts Commission, Australian Disability Royal Commission, Aotearoa New Zealand Commission). Yet some also have commissioners or commission staff who previously worked in professions, services or government departments involved in institutionalization. The Australian Disability Royal Commission was criticized for appointment of commissioners seen as having conflict of interest due to their previous roles in government, with only one of those individuals resigning.²¹⁶

4.3. Repairing injustice

Additional to the role of broader society in responding to mass harm and their contribution to that harm, specific wrongdoers also have an important role in reconstructing moral and social relations in the aftermath of mass harm.

4.3.1. Missed opportunity for abolitionist worldmaking?

Truth is a foundation for ‘repair’, which is a collective process of rebuilding relationships and communities and developing a shared set of moral values, and sense of hope and trust. Walker refers to ‘moral repair’ as ‘restoring or creating trust and hope in a shared sense of value and responsibility’²¹⁷ and relieving individuals’ suffering, disillusionment, isolation, and despair.²¹⁸ Moral repair can involve repairing wrongs within the existing social and moral order and repairing the ‘social and moral order itself and the normative expectations that house it’.²¹⁹ As such, repair is not simply about returning to the status quo but addressing any dynamics of domination and oppression that have shaped those relations.²²⁰ It is an ongoing process and way of relating to each other, rather than a one off act.²²¹

Olúfemi Táíwò argues for a move beyond repairing injustice to worldmaking—for constructing more hopeful and just futures, and to forge new justice connections between diverse harms which might otherwise be understood in separate legal or policy domains.²²² Also moving beyond repair and towards transformation, others argue for a broader foregoing of power²²³ and mass accountability.²²⁴

Deinstitutionalization truth commissions can entrench the existing status quo if they are not directed towards abolitionist and transformational goals.²²⁵ Disability Justice and Transformative Justice activists and critical disability scholars provide grounded examples of how this risk might be avoided in the context of institutions.²²⁶ Liat Ben-Moshe argues moving beyond institutions requires an abolitionist approach involving three key aspects: closure of buildings and movement of people out, provision of support and resources within the community, and an epistemic shift in how we understand disability.²²⁷ The extent deinstitutionalization truth commissions will be transformative relies upon their scope and the various issues discussed in Sections 4.1 and 4.2—tracing continuities of the past into the present, cutting across settings and systems, connecting institutions to settler colonialism, colonialism, and imperialism, and challenging cultural dynamics of ableism—as well as the extent they challenge existing epistemic and material power hierarchies—of professionals and service providers—and provide opportunities for disabled people’s voices and leadership.

Institutionalization can persist in laws, systems and disciplinary knowledge that can endure beyond the closure of specific sites.²²⁸ Laws and systems that provide the structural continuity of institutionalization, ableism and other systems of oppression such as sexism and racism must also be fully addressed in a Disability Truth and Repair Framework.²²⁹ Emerging government-led initiatives discussed in Section 3.2 have not always focused on laws, systems and disciplinary knowledge. For example, the Australian Disability Royal Commission did not engage in in-depth exploration of ableism in the justice system, judiciary and legal profession and the role of law and legal actors in enabling violence against disabled people. This can be contrasted to its exploration of discrimination against people with intellectual disability in health systems.²³⁰

Engaging with concepts of worldmaking and abolition in a Disability Truth and Repair Framework invites consideration of the role of the state in truth-telling and truth-seeking. To this end, Disability Justice and Transformative Justice activists provide approaches centering survivor leadership, collective care and liberation.²³¹ In a similar vein, scholarship on alternative human rights imaginaries approaches human rights as a grounded set of practices focused on reconstructing new material, political and discursive realities rather than a set of institutional and externally imposed practices.²³² Considering the state is particularly important given the role of governments in regulating, funding and operating institutions, and their ongoing support of laws and systems that sustain ableism and other ‘injuries of normality’.

4.3.2. Excusing perpetration by services and professionals?

‘Atonement’ or ‘making amends’ refers to ‘wrongdoers’ attempts to respond in a morally appropriate way to their wrongful actions’.²³³ Atonement is a voluntary action by a wrongdoer and thus is distinct to conditions imposed on the wrongdoer by others such as punishment and compensation.²³⁴ Atonement is about the ‘reconciliation of a relationship’.²³⁵ The goal of atonement is ‘moral reconciliation of victims, wrongdoers, and involved communities’,²³⁶ which involves ‘a normalization of their standing in the moral community’.²³⁷ This is because atonement ‘must address the social nature of wrongdoing’.²³⁸ Atonement applies beyond individual wrongdoing to group wrongdoing—it is possible to hold a group morally culpable for wrongs committed in the past by other group members, even by earlier generations. It is possible for groups such as states, churches and corporations to atone. This is because institutions stand in moral relationship with others, and these relations can be damaged by wrongdoing.²³⁹ Atonement by such groups ‘should communicate those attitudes that underlie the emotions of guilt and repentance in individuals—judgments that the past was wrongful, that the victims deserved better, and that the wrongdoer justly bears responsibility for the harms, as well as the intention not to repeat the wrong in the future.’²⁴⁰ These attitudes can be expressed through such actions as reparations, apologies or truth-telling.

The role and participation of disability service providers and professionals in deinstitutionalization truth commissions needs to be carefully considered in development of a Disability Truth and Repair Framework. The extent that disability service organizations and individual professionals will want to participate in a deinstitutionalization truth commission and be oriented towards atonement will depend upon their willingness to recognize their participation in injustice and thus acknowledge they have anything to atone for.

For health, social work and legal professionals, their willingness to participate and atone might require deep reflection on their professional values and self-identity. This might be challenging if the pedagogical and ethical frameworks for their disciplines continue to support the assumptions that institutionalization was right and normalize the role of professionals in that system. This is further complicated where these services and professionals have a role in the new deinstitutionalized era, and government might be concerned about being too demanding on them if it risks alienating them from the system that requires their participation in order to function. Atonement must extend to professionals involved in the design, building and urban planning, and delivery of goods and services to institutions.²⁴¹

Many disability service providers are charities with multi-million-dollar annual revenue. Some have grown their wealth through unpaid labour of disabled people and through cost efficient care involving use of restrictive practices and neglect while also having undergone inclusive and empowerment re-brandings. Their willingness to participate and atone might be approached as an issue of impact on their public image and exposure to legal risk and financial risk. Indeed, some Australian organizations have been so unwilling to participate in the National Redress Scheme that followed the Australian Abuse Royal Commission that the government introduced a new governance standard for charities requiring them to participate in the scheme or risk losing their charitable status.²⁴² Critical exploration of this issue can draw on research in other contexts that has highlighted the problems and limits of corporations’ participation in truth-telling and apologies.²⁴³

4.3.3. Avoiding complexities experienced by family members?

Recognition and atonement can be challenging for individuals and organizations that have not been aware of their participation in injustice. Michael Rothberg’s theory of the implicated subject shows why truth-telling is useful in exploring complexities of harm and accountability. ‘Implicated subject’ is used to describe individuals who are ‘neither a victim nor a perpetrator’ but ‘occupy positions aligned with power and privilege without being themselves direct agents of harm’. Implicated subjects ‘contribute to, inhabit, inherit, or benefit from regimes of domination but do not originate or control such regimes’ and ‘help propagate the legacies of historical violence and prop up the structures of inequality that mar the present’.²⁴⁴ Implicated subjectivity is ‘not an ontological identity’, a static and permanent position one inhabits, but rather is situational or relational, such that individuals might be implicated subjects in some contexts and victims or perpetrators (or both) in others.²⁴⁵ The category of the ‘implicated subject’ facilitates a ‘larger reckoning with both the structures of power’ that shape past mass harm and its ongoing impacts in the present.²⁴⁶ This is particularly so because those who are implicated both contribute to and benefit from these structures of power.²⁴⁷

The role of family members in institutionalization is a vital consideration in development of a Disability Truth and Repair Framework. Families were often coerced into handing over children to institutions and told this was the best thing they could do in a context where there was little service support in the community and high levels of social stigma associated with disability. Moreover, siblings might have witnessed institutionalization but been powerless to intervene or might not even know they have a sibling institutionalized but have benefitted from that child’s absence.²⁴⁸ Thus, intergenerational harm and healing are an important dimension.²⁴⁹ However, it is important not to assume all families have been loving and safe for disabled people. While family members might experience grief, anger and trauma from their participation in institutionalization, at other times family members might have been violent towards disabled family member or actively supported institutionalization and removal of disabled people from family lineages.²⁵⁰

Truth commissions, in not resulting in findings of liability, might provide space to explore these complexities and give opportunities for people to recognize and confront their implication and to share their grief, loss and trauma without detracting from the primary experiences of disabled people. However, there have been criticisms that truth commissions do end up forcing people into specific subject positions of victim and perpetrator.²⁵¹ There is a risk that deinstitutionalization truth commissions focusing on family experience will detract from the experience of disabled people. However, research with people with intellectual disability indicates disabled people view as important recognizing the complexities for families.²⁵² Similarly, research with people living with dementia on redressing harm of long term care found that they also recognized a place for family members to discuss their experiences of institutions.²⁵³ Thus, involvement of family members in deinstitutionalization truth commissions, including in official roles (such as the Massachusetts Truth Commission which has designated positions for family members), will need to be carefully explored.

Critically exploring the significance of ‘family’ in a Disability Truth and Repair Framework must also be open to alternative understandings of family beyond the white, nuclear family, including First Nations kinship structures, queer chosen family, and networks of care within institutional settings.²⁵⁴ A richer understanding of family is particularly important to the task of repair, in building alternative networks of care and connection beyond institutions and charities.²⁵⁵

V. CONCLUSION: TOWARDS A DISABILITY TRUTH AND REPAIR FRAMEWORK

The CRPD Committee’s call for deinstitutionalization truth commissions marks a significant progression in the focus of the CRPD’s rights to access to justice and independent living. In this article I have provided a conceptual and practical foundation for new directions in international disability human rights law scholarship, encouraging conceptual, technical and empirical exploration of how governments, professionals, charities, families and communities recognize and reckon with the history and ongoing injustices of institutions. As a contribution to this next generation of CRPD scholarship, I have argued for development of a Disability Truth and Repair Framework to support future design and critical evaluation of deinstitutionalization truth commissions. I identified a non-exhaustive range of key dimensions to explore in future development of such a framework.

One group of considerations relates to the dimension of ‘injustice’. These include a nuanced understanding of all types, scales and contexts of institutions, temporal and spatial dynamics of institutionalization and disabled people’s experiences (including those who are First Nations, racialized, poor and female) of institutionalization. They also include a nuanced understanding of experiences of disablement and intersecting systems of oppressions, cultural dynamics of ableism and eugenics, and the foundational role of settler colonialism, colonialism and imperialism in disablement and institutionalization and intersections of institutionalization and settler colonial, colonial and imperial violence, dispossession and genocide.

A second group of considerations relate to the dimension of ‘truth’. They include impacts of power dynamics associated with professionals, government, and charities on epistemic hierarchies and ethical and moral assumptions about institutionalization, including those that are intrinsic to the legal and social identity of charities and legal, health and social work professionals’ education, professional practice and professional identity. They also include impacts of ableism and intersecting systems of oppression on epistemic hierarchies, unseating ableist and racist knowledge and communication norms, and addressing disability and cultural inclusivity, accessibility and safety.

A third group of considerations relate to ‘repair and transformation’. They include abolition, First Nations self-determination and sovereignty and pedagogical and ethical transformation of disciplines and professions. A nuanced and reflective approach to the complexity of family, including attention to how care and connection is re-imagined beyond conventional sites of the nuclear family is also vital.

A Disability Truth and Repair Framework must centre leadership and self-determination of disabled people while also being attentive to engaging with diverse voices, including First Nations disabled people and disabled people from racialized minorities and different cultural contexts and geographic regions, and confront the challenges of the role of the nation state in these processes. Development of the framework must engage in a non-extractive and respectful way with diverse scholarship on truth-telling and reparative practices, including work already being done by disabled people, women, First Nations people, queer communities, and other minoritized communities. Conceptually, development of the framework requires exploration of relations between disability, temporality, spatiality, and justice, and intersections of ableism, racism and settler colonialism, colonialism and imperialism.

ACKNOWLEDGEMENTS

I am grateful for feedback received from colleagues at the 2022 Global Meeting on Law and Society and during 2023 and 2024 presentations at Queen’s University Belfast, Manchester Metropolitan University, Edinburgh Napier University, and Shippensburg University. Thank you to Hasret Cetinkaya, Beverley Clough, Piers Gooding, Kay Lalor, Cheryl Lawther, Janet Lord, Donna Macnamara, Kieran McEvoy, Gerard Quinn, Sally Sheldon and Will Pons for their feedback and to Bruno Pegorari and Evelyn Rose for research assistance informing earlier iterations of this project. Thank you to Peter Bartlett, Shreya Atrey, and the anonymous peer reviewers for feedback during the development of the article.

Footnotes

Author notes