The Committee on the Rights of Persons with Disabilities has announced a series of regional consultations on deinstitutionalization, starting with one for Central Asia and Eastern Europe on February 25 and a second for Central and South America on March 1. The other regions will follow. You can read all the details in an information note here.
This is an important opportunity for survivors of psychiatric oppression (if you are still alive and struggling as a current victim, I consider you a survivor, along with those who have gotten out) and our allies to make sure we are heard.
Victim’s perspective or system’s perspective?
Too often ‘deinstitutionalization’ has meant community-based mental health services, instead of freedom and acceptance, instead of recognition that we return from hell as survivors, that ‘survivor’ isn’t a euphemism. Deinstitutionalization initiatives tend to take a service-provider point of view, seeking to rearrange their own territory in response to criticism of severe and egregious abuses. We need instead to start from the perspective of victimized persons, acknowledging that the human rights violations go wide and deep, that they are systemic and cannot be rooted out unless we unseat the ‘service providers’ who have as a class been the perpetrators of these violations from directing repair. Similar to the approach of feminists who insist on the personhood of female human beings – autonomous, not the negation of males or their perspectives but something entirely different – we need to start as victims of psychiatric oppression, looking at our reality – as individuals as collectively in our countries, localities, communities – and naming both the violations and what we want as remedies.
Of course our movement has been doing this since its beginnings, and we now have the excellent resource from our early days as a liberation movement, the archives of Madness Network News. (I urge everyone to read them, and mad artists to respond to the call for submissions for a new issue, as MNN as starting up again with the blessings of its original editors.) In the US we have the Principles of the 10th International Conference on Human Rights and Against Psychiatric Oppression as a reference; globally there are also the WNUSP Human Rights Position Paper, the WNUSP Kampala Declaration, the PANUSP (now PANPPD) Cape Town Declaration, the TCI-Asia Pacific Bali Declaration, and the Lima Declaration of the Redesfera Latinoamericana de Diversidad Psicosocial. We have the Convention on the Rights of Persons with Disabilities itself and the UN materials interpreting and applying that Convention, which have been developed with substantial input from the survivor (and mad, and persons with psychosocial disabilities) community. If you read my blog regularly you will be familiar with these resources, and with my writings on the topic; you can find links on the CHRUSP website.
You will have your own experience and history as part of this movement, and the burning issues in your life and community to bring to the CRPD Committee’s consultation.
Think big (but be concise… 520 word limit)
The CRPD Committee is open to the totality of experiences that can be considered as forms of institutionalization, including ‘placement in… all mental health settings’ and ‘criminal forensic detention’, as indicated in the Information Note on the consultation, question (d):
‘What measures need to be adopted to end all forms of institutionalization in legislation and practice, including placement in small or large group homes or family-like settings, special schools, colonies for persons affected by leprosy, all mental health settings, religious or faith healing settings, criminal forensic detention, or any other places where persons with disabilities are deprived of their liberty?’
Question (e) also opens up a wide avenue for addressing the totality of discrimination against us and the barriers to “freely enjoying [the] right to live independently,” as we experience them:
“What measures need to be adopted to address the situation of specific groups, such as children with disabilities, young persons with disabilities, older persons with disabilities, persons requiring high levels of support, women with disabilities, persons with intellectual disabilities, persons with psychosocial disabilities or any group that is at a high risk of institutionalization, reinstitutionalization, isolation, and coercion? What needs to be done to eliminate discrimination against these groups in legislation and in practice, and to allow them to freely enjoy their right to live independently?”
The consultation addresses short-term as well as long-term support needs (including “crisis support”) and includes arbitrary detention, which can be short- or long-term, as one of the relevant human rights violations. The Information Note cites the Committee’s Guidelines on Article 14 (liberty and security of the person) along with its General Comment on Article 19 (living independently and being included in the community) as the norms that ground their work on deinstitutionalization, and asks question (f) on disability-related support and (g) on remedies and redress:
“What kinds of disability-related support is required for the specific group you are part of, to meet long-term, periodic, and transitory requirements, including crisis support?”
“What kinds of remedies and redress should be available for persons with disabilities who have been institutionalized, and/or subjected to any form of arbitrary detention, forms of torture, other inhuman or degrading treatment or other coercive and harmful practices in connection with institutionalization?”
All of this opens the door to putting forward a comprehensive, holistic, survivor human rights agenda, including to discuss your view of what crisis support should be and whether it is a mental health service or something else. (Here is my short take on that question, one version of it in any case, and I am in process of finalizing a longer piece on crisis support based on CRPD Articles 12 and 19 – decision-making support and support to continue living independently and being included in the community.)
One more important reference for thinking about deinstitutionalization from a survivor perspective is in the UN Basic Principles and Guidelines on Remedies and Procedures on the Right of Anyone Deprived of Their Liberty to Bring Proceedings Before a Court. Principle 20 and Guideline 20 address the absolute prohibition of detention based on actual or perceived psychosocial disability and other disability-related issues related to the right to liberty. Paragraph 107 (d) and (e) set out a possible approach to judicial remedies for individual and system-wide release from detention and forced treatment in mental health settings, which is victim-centered and responded to survivor input:
“(d) Individuals who are currently detained in a psychiatric hospital or similar institution and/or subjected to forced treatment, or who may be so detained or forcibly treated in the future, must be informed about ways in which they may effectively and promptly secure their release, including injunctive relief;
“(e) Injunctive relief should consist in an order requiring the facility to release the person immediately and/or to cease immediately any forced treatment and any systemic measures, such as those requiring mental health facilities to unlock their doors and to inform persons of their right to leave, and establishing a public authority to provide for access to housing, means of subsistence and other forms of economic and social support in order to facilitate de-institutionalization and the right to live independently and be included in the community. Such assistance programmes should not be centred on the provision of mental health services or treatment, but free or affordable community-based services, including alternatives that are free from medical diagnosis and interventions. Access to medications and assistance in withdrawing from medications should be made available for those who so decide.’
The standard developed by the Working Group on Arbitrary Detention is also referenced in the CRPD Guidelines on Article 14, which forms part of the normative background for the current consultation on deinstitutionalization. If you agree with it or think it can be adapted to your country or locality, you might mention that in your submission.
Reparations as a framework for deinstitutionalization
Some survivors, notably Hege Orefellen as well as myself (including in one of my blog posts here), have called for reparations as the way to comprehensively provide individual and collective remedies to survivors. “Reparations” means the obligation of states (countries, governments) under international law to remedy serious human rights violations. This obligation has varied sources and was elaborated on in a set of Basic Principles and Guidelines adopted by the United Nations General Assembly in 2005. Our approach is grounded in international law and in the absolute prohibition of forced psychiatry; we address demands to the state and do not seek reconciliation between survivors and psychiatrists, unlike some initiatives that have been put forward in the past for a truth and reconciliation commission.
In Hege’s intervention on this topic, she summarizes the different types of reparation measures – satisfaction, guarantees of non-repetition, restitution, “rehabilitation” and compensation – and how they are relevant to survivors of psychiatry. That is a valuable reference that is concise and clear, for anyone wanting an orientation to focus their own advocacy.
I have promoted the framework of reparations as an avenue for comprehensive change in law and policy to dismantle psychiatric oppression – a framework to look at all that is wrong, all that has violated our human rights as a matter of deliberate discrimination as well as cruel indifference (which I think mirror one another and always go together). From a reparations standpoint, we start out with the premise that forced psychiatry, all the commitment laws (inpatient and outpatient), guardianship and incapacity laws, categorical insanity defense, all the legislated inferiority and exclusion in areas from child custody to voting rights to employment and licensing (did you know that in Korea there are a huge number of professions and occupations from which psychiatrized people are excluded?) – that all these laws, all the ways that seemingly neutral discrimination hides discrimination or has a discriminatory effect, all the ways that laws said to benefit us channel us into subjugation (e.g. disability pensions that aren’t enough to afford housing, so you have to live with abusive family or in de facto institutional “mental health” housing programs) – all these and any other discriminatory policies and practices, violate our human rights. They are not merely a matter of bad practice or outdated approaches that have to be changed.
A reparations framework says that people leaving institutions are owed something by the state because the state put them there or enabled the private actors who put them there. It reminds us that trauma, brain damage, poverty, dis-ablement and de-skilling, ways we survive unremitting violence and abuse (that don’t always look pretty or feel good), moral injury from what we have to do to ourselves for that survival – all this and more is harm done to us by the oppression and not a sign of “mental illness” or “psychosocial disability” for which services are required. Everyone – *everyone* – coming out of a psychiatric institution is traumatized; some of us also need and want support services related to madness, distress, unusual perceptions or beliefs; some of us want to receive those kinds of services from the mental health system (and some of those also question the mental health system and would rather find something better, or come to question it after hearing new ideas in the survivor movement).
States shy away from reparations, though UN human rights mechanisms call for them in many contexts. To states, reparations mean primarily money – compensation, and formal acceptance of responsibility for having violated international law, which hurts their reputation and opens them to a whole set of demands they would rather not address. The victims of military sexual slavery by Japan in the Asia-Pacific War/World War II, known as “comfort women,” still have not won formal acknowledgment or compensation based on assumption of responsibility, though a Korean court has recently ruled that it is owed to them.
I would like to see reparations as a way to shape the discussion of what “deinstitutionalization” means, if “deinstitutionalization” is of interest globally as a focus for the disability movement and UN human rights mechanisms. Compensation is an obligation in itself, but is also a way to think about economic assistance due to people leaving institutions – those who leave because they’ve been held against their will (arbitrary detention, arbitrary because all mental health detention is discriminatory and therefore arbitrary) and they exercise the right to leave, and also those who remain in institutions because they haven’t proactively exercised the right to leave but can be approached in a process of systemic elimination of institutions, to support them to express their needs and wishes for how they want to live. Some survivors have reframed ‘disability pensions’ for themselves as compensation for the trauma and disablement caused by institutionalization; that’s a fair point. Policies on eligibility for disability pensions should be reviewed to ensure that no one is required to demonstrate their abject inability or use psychiatric services, or other mental health services, as a formal or informal component of an evaluation if the disability claimed is trauma, mental health condition, psychosocial disability.
That is one example of how a reparations framework can be applied to deinstitutionalization. We can do this explicitly, invoking that framework and the obligations imposed on states, which the CRPD Committee has invited us to do (it is mentioned in the Guidelines on Article 14 also). Although we can also do it implicitly, thinking out for ourselves, what does restitution mean for us? What does satisfaction mean? etc. – the consultation represents an opportunity to make the linkage explicit as a part of states’ obligations under the CRPD in particular.
The CRPD Committee’s Information Note refers to reparations as due to individuals, but there are collective dimensions, particularly satisfaction and guarantees of non-repetition. The interplay between individual and collective is addressed implicitly in the paragraphs from the Working Group on Arbitrary Detention quoted above. Individuals need to be released from being held involuntarily in a mental health setting, and they need to be guaranteed that it will not happen to them again. This guarantee could be given to the particular individual through a court judgment or settlement, but in fact it is a systemic, usually de jure human rights violation (one that the law itself has enshrined in practice), and the solution has to be systemic, so that every individual gets the benefit of it and isn’t forced to go to court to seek redress personally, which is out of reach practically for most people (for economic reasons, because of scarcity of willing and competent lawyers, because it’s a huge effort to bring a case pro se, etc.).
I would therefore argue that the collective dimension of reparations is required in order to comply with the CRPD with respect to each individual whose rights are violated. The laws have to be repealed or otherwise nullified, and each person has to be released (restored to their liberty, having their legal capacity restored); economic and social assistance to re-establish themselves in the community can also be understood as restitution – if their former dwelling is no longer available (e.g. they were evicted or it was an abusive situation), they need a replacement that is of a decent standard. This needs to be made available proactively to each individual, without requiring them to make individual applications to a court – i.e. redress and remedies cannot be subordinated to the concept of ‘access to justice’ in the procedural sense.
Collective measures require input from the collective as a whole, so that all victims of institutionalization have the opportunity to contribute their vision. This is congruent with the obligation under Article 4.3 to closely consult and actively involve persons with disabilities, including children with disabilities, through their representative organizations, in all matters relating to them including implementation of the Convention (see General Comment No. 7 for further elaboration). A reparations approach starts from the premise that institutionalization, arbitrary detention, and forced treatment (including coerced voluntaries, anything other than *free* and *informed* consent *by the person concerned*) are human rights violations and that the population to be consulted on remedies are those who have been victimized. This might help to shift the discussion away from ‘human rights in mental health’ approaches to policy-setting that start from the contrary premise that mental health services need to be transformed, i.e. that the services are necessary and held as a constant. In a human rights reparations framework, the victims’ needs as they articulate them should be held as the constant, giving space to diverse points of view about the role or non-role of mental health services.
I hope that this approach may resonate with some of you reading, and that you will put all your passion and intelligence into a submission to the CRPD Committee that helps to create the collective vision that they are seeking, to inform a set of guidelines on deinstitutionalization that will be relevant to survivors of psychiatric oppression.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.