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Reimagining Crisis Support

Now available to order! Order Book.

Please use the order page to obtain free downloads of the Epub and PDF versions, or to order a print copy.

Watch video from launch event on June 18, 2021:

https://youtu.be/F53PcGXwmGQ (English)

Spanish video coming soon.

The book will be translated into Spanish and Mandarin, and possibly other languages.  Watch this space for updates.

Cover artwork 'She Is Free, Centered and Whole,' (c) Diana Signe Kline 2021.

 

Description

Reimagining Crisis Support: Matrix, Roadmap and Policy aims to shift the conversation about personal crisis from one based in mental health discourse to one based in a social model of disability and human rights. 


The book's primary thesis is that crisis support can be reimagined as support for decision-making and maintaining an independent life in the community - as provided for under Articles 12 and 19 of the Convention on the Rights of Persons with Disabilities.  Community-based, non-discriminatory conflict resolution and violence prevention are complementary to crisis support but are distinct as they involve more than one person's needs and interests at the same time. 


The book explains its key premises and sets out some elements of decision-making support for personal crisis, then explores the Matrix of rights and implementation measures set out in the Convention that provide a scaffolding for a social, human rights-based approach to crisis support.


It then provides a Roadmap of aspirational transformations and strategies that are needed to create the conditions in which reimagined crisis support can be meaningfully realized.  These range from large-scale social justice aims such as Democratize Knowledge and Strengthen Communitarian Practices to Tools such as 'Pilot projects' and 'Evaluate existing support practices'.


A section on Policy addresses key issues for translating the model presented into national policy.  This should be read in conjunction with the chapter on Implementation: Legislative Reform that is included in the Matrix section.


This book is intended for diverse audiences from policymakers to grassroots activists.  It is grounded in both a US context (inevitably as the personal informs the political) and wider perspectives from global networking.  

 

Table of Contents

Acknowledgements


Introduction


Basic Premises

Crisis support

De-medicalization

De-judicialization

De-medicalized, de-judicialized crisis support and response to conflict

            Personal support; Conflict de-escalation and responding to violence; Suicide and self-harm

Decision-making support for personal crisis


Matrix: Human rights underlying this framework

Legal capacity

Integrity

Living independently in the community

Other substantive rights:  Right to housing and subsistence; Right to freedom of expression and communication; Right to practice art, music, science, spirituality, religion and other aspects of culture; Right to sexuality, relationships, parenting, family; Right to safety from violence and abuse; Right to bodily comfort and health; Right to advocacy and political participation; Right to education and right to work

Duties toward others
Implementation: Legislative reform

          Legal capacity reform; Right to live independently in the community; Decarceration; Synthesis

Implementation: Reparation


Roadmap: What will it take to put into practice?

Democratize Knowledge

Build Community Accountability 

            Law and morality; The role of the state; Community accountability – starting from within

Strengthen Communitarian Practices

            Solidarity economy; Care and forbearance; What is value?

Tools

          Principles of de-medicalization and de-judicialization; Pilot projects; Advocacy/shield programs; Evaluate existing support practices

Link our diverse stories


Policy implications


Appendix I: Mind-Maps

Appendix II: Key Points of Positive Policy

Appendix III: Discernment as Process, not precondition

References

 

Launch

Videos from launch event June 18, 2021

Excerpts from the book were read and a panel of survivor and disability movement colleagues were invited to discuss the book.  Panelists were Beatriz Pérez Pérez, Hege Orefellen, Lu Han, Risnawati Utami and Amalia Gamio.  The event was held in English and Spanish with translation, and was recorded in both languages.  

English language video:

https://youtu.be/F53PcGXwmGQ

Spanish coming soon.

 

Introduction

An excerpt from Reimagining Crisis Support: Matrix, Roadmap and Policy, by Tina Minkowitz (c) 2021

I began talking about the need to de-medicalize crisis support in September 2018 after learning from lawyer Alberto Vásquez that the Peruvian legal capacity reform, which remains the clearest and most advanced in its fidelity to the Convention on the Rights of Persons with Disabilities, left only one basis for involuntary mental health interventions outside the context of criminal proceedings – as involuntary hospitalization in situations characterized as a medical emergency.  



The application of the CRPD to medical emergencies is itself a dimension of legal capacity reform that has to be fulfilled.  The standard of ‘legal capacity at all times’ and ‘best interpretation of will and preferences’ (when it is not feasible to determine the person’s will) could suffice for actual medical emergencies – say, when a person is unconscious and could bleed to death, to justify lifesaving treatment notwithstanding the non-manifestation of consent or refusal.  


But in the context of psychiatry I was concerned that the CRPD would be incorrectly applied, in particular that the obligation to respect a person’s manifestation of will at all times including in situations of emergency or crisis would be ignored, and the criterion of ‘best interpretation’ invoked when it was not warranted.  


The framing of crisis as a medical emergency implies a need for urgent medical intervention and assumes the appropriateness of such intervention.  For this reason, especially in light of the legacy of psychiatry as segregation and coercive control, it was highly likely that psychiatrists would view situations where the person is unclear or ambivalent about what they need, struggling to express new and difficult feelings and perceptions, or reacting strongly against the presence of a psychiatrist or mental health worker, as a failure to manifest their will, and that they would proceed with medical intervention as the default course of action without ascertaining that the person welcomes such a response.  Forced interventions would thus be likely to continue, requiring case-by-case redress after the fact.  


It was clear that the challenge to a medical narrative had to be incorporated into the CRPD normative framework.  It could not be left to a debate about the type of services to be offered.  




The stimulus to take on the topic of crisis support in greater depth was a conversation I had with Israeli human rights advocate Sharon Primor at a conference in Hong Kong in April 2019.  Our dinner companions enjoyed watching us spar, as she challenged me to set out positive policy as an alternative to forced psychiatry.  I started to write a list of the needs in crisis situations and the kinds of responses that would have to be in place for comprehensive policy to take the place of the medical coercive psychiatric system.  I posted some notes on Academia.edu (under the title ‘Towards Positive Policy’) as a draft for people to comment on, and out of this developed the skeleton concept of de-medicalized crisis support based on Article 12 (support for decision-making) and Article 19 (support for practical necessities of living in the community).  


The premise of de-judicialization came a few months later during a conversation with Michelle Funk of the World Health Organization and Catalina Devandas, Special Rapporteur on the Rights of Persons with Disabilities, about what a legislative framework might look like for de-medicalized crisis support.  It became clear to me that there cannot be any legislative framework that treats crisis support as a mandated action in response to defined situations; to do so would carry over the managerial approach of mental health legislation that is incongruent with providing support as act of respect and solidarity among fallible individuals who are all vulnerable in their shared humanity.  Crisis support needs to be made available as a positive entitlement of the individual, in the same manner as other disability-related support such as personal assistance, to bring to full fruition the social model of disability for people with psychosocial disabilities. 


This paper presents a framework for crisis support based in the social model of disability, and then branches out into exploration of broader social change and actions that can help to bring about this crisis support – de-medicalized and de-judicialized – on the ground.   It began as narrative of an initial graphic representation that one colleague calls a mind map, which was to be developed into a hyperlinked website with text and references on the various components.  The two-part mind map, which differs in some particulars from the outline of this paper, is attached here as Appendix I. 


The concept in skeleton form is found in the paper, ‘Positive policy to replace forced psychiatry, based on the CRPD’, and was presented in an even more pared-down version in a one-page intervention at the 2019 CRPD Conference of States Parties; the latter is also attached, as is a related essay, ‘Discernment as process, not precondition’.  




I use the term ‘crisis’ as a shorthand, understanding that it is problematic – similar to ‘psychosocial disability’, it can be misunderstood as a euphemism for the old paradigm of mental illness.  I use the term in two ways.  First, it allows me to think about the complex social situation that is happening when anyone thinks about invoking psychiatric commitment, with the differing motivations and perceptions of all concerned.  That starts from the problem I am aiming to solve - what is going on when this happens and what can we do instead?  How can we divert the good motivations into a different channel, while rejecting the violence, segregation and making anyone an outcast from community or intersubjective relations?  This is a social crisis that has personal as well as political dimensions for everyone involved.


Second, sometimes though not always the person who is targeted for such intervention has been experiencing her own sense of urgency and distress.  Understanding this urgency and distress as crisis allows us to reframe it apart from the question of whether anyone is trying to violate her human rights.  This is a personal crisis that has social and political dimensions.  




In view of the social and interpersonal dimensions of crisis, whether we start out understanding it from the social or the personal point of view, community is both the background of any crisis and a participant in it.  This does not mean that the community around a person has any ownership of her personal crisis or her decisions.  It means that there is potentially a restorative or transformative justice need in relation to the social (including interpersonal) and political dimensions. 


Justice and healing cannot be led by mental health professionals.  On the contrary, that sector needs to make reparations for its profound violation of the fabric of community through its violent practice of psychiatric commitment and forced intervention with drugs and electroshock, practices that subjugate and terrorize its victims and render society as a whole vulnerable to its political and ideological influence.  The first step is to end the violations and step aside; the mental health sector cannot be either directly or indirectly in charge of a new paradigm.    




This paper is itself a bridge between different ways of engaging with the traumatic events that led me to bear witness as a survivor of psychiatric violence – from law and policy generated deductively from the necessity for abolition, to a more situated practice that ultimately blends seamlessly with a need for radical change in all areas of society.  This is in one sense intersectional but in another an expression of an underlying universality that converges from many directions.   




I have written most of the paper during the globally shared yet vastly disparate and isolating world of the COVID-19 pandemic and, in the US, an uprising against racist police violence and other systemic racism, known as the Movement for Black Lives.  Crisis support has received attention since it is apparent that police responses to someone experiencing personal crisis can be life-threatening.  The concept of social-model crisis support presented here dovetails with that serendipitous national conversation that draws on theory and practice of the prison abolition movement and psychiatric survivor movement, as well as with the human rights framework for robust equality that is set out in the CRPD.

 

Decision-Making Support

An excerpt from Reimagining Crisis Support: Matrix, Roadmap and Policy, by Tina Minkowitz (c) 2021

CRPD considers both guardianship regimes and forced treatment regimes in mental health to be restrictions of legal capacity that take away a person’s right to engage the legal system by her own will and choices, and allow others to make choices that profoundly affect the person’s life: even decisions about her own body like ingesting psychotropic drugs or undergoing sterilization or electroshock.  These regimes include the deprivation of liberty using the power of involuntary admission to hospitals and institutions delegated to medical personnel or to courts, or by accepting the consent of guardians or family members to represent that of the person concerned, whose own decision is denied legal validity.  All these practices violate the right to legal capacity.


In contrast, CRPD sets out a positive entitlement of support for exercising legal capacity that allows people to seek help with making decisions, understanding information or communicating their choices, without having anyone else take over for them or act against their will. 


This support regime is one way to address the needs people may have in crisis situations.  


In crisis, it can be hard to make decisions because we feel like the stakes are high, there may be no answer that feels good or right or safe, and we don’t know which way to move.  A crisis by definition entails a dilemma, and usually requires both immediate and longer-term decision-making, including both discernment and action.  Support for discernment and for taking action, dealing with both immediate and longer-term needs, is a non-medical way to conceptualize an important part of the needs that emerge in crisis situations, for the purpose of developing policy and programs for de-medicalized, de-judicialized crisis support. 


This type of support is informal in the sense that it does not need to involve formal registration of supporters or a written agreement setting out the scope of support.  In a crisis, what’s important is meeting the person where she is, both literally and figuratively, engaging with her ethically, and respecting her choices.  Ethical guidelines for crisis supporters, and holding them accountable for acts of abuse or bad faith, are the appropriate safeguards; legal formality serves no purpose and is likely to be counterproductive.  Formalizing a legal agreement in the midst of a crisis itself is inadvisable, and while a formal agreement could be used for pre-planned crisis support, this might lead to a managerial approach and discourage flexibility and attunement to the present moment.  


Support for making decisions takes many forms.  It includes prayer and divination, not only linear rationality.


Support can also be a personal practice of befriending oneself.  None of us exist in total isolation — even a hermit has a history and culture, even a person who has lost her memory had past experiences.  Solidarity is always necessary in crisis at least to the extent of respecting a person’s chosen solitude, and potentially checking in to assist with basic needs if that is welcomed.

 

Practical Support

An excerpt from Reimagining Crisis Support: Matrix, Roadmap and Policy, by Tina Minkowitz (c) 2021

Crisis support includes support for the practical aspects of managing life when you might be emotionally very sensitive, focused inward, or simply kept busy with the demands of a fraught situation.  Housing or food insecurity, domestic violence, sexual violence or exploitation, job loss, end of an intimate relationship, deaths and illnesses of close people, precarity of income, confront people with practical needs that can lead to a life crisis.  A crisis that starts from within (e.g. crisis of purpose and meaning, eruption of past trauma, or a source within or beyond the self that may never be fully known) can have implications for practical life that are far-reaching.


Practical crisis support could involve help with household tasks and navigating the community (the kind of tasks typically done by a personal assistant), navigating service systems and financial and legal issues (the kind of tasks done by knowledgeable advocates), and/or emotional support to get through the days and to confront difficult tasks.  It could include going to a crisis respite center or a spiritual or healing retreat, or otherwise finding a place to go that feels safe, comfortable and nurturing.  


Navigating legal and financial issues or service systems during a crisis overlaps with support for exercising legal capacity in those areas.  Transactional support for exercising legal capacity in relation to a discrete legal act or proceeding, including support during police investigations and criminal trials, should be available with the flexibility to meet needs of people in crisis, in case it is not possible or desirable to postpone the matter.


Emotional support and support to prevent isolation overlap with support for healing and for discernment about any aspect of a crisis (which similarly falls under the right to legal capacity).  Someone experiencing crisis may want to be left alone, may want someone around all the time, or some combination.  Preventing isolation means respecting the person’s wishes about the degree of contact and connection, so that community remains available to them; respecting chosen solitude while maintaining awareness and solidarity in case they reach out. 

 

Author

Tina Minkowitz is a theorist and practitioner of international human rights law from a survivor of psychiatry perspective.  She contributed significantly to the drafting of the Convention on the Rights of Persons with Disabilities and to its subsequent interpretation and application, which is ongoing.  


From 2002-2015, she represented the World Network of Users and Survivors of Psychiatry in various capacities.  Currently she is President of the Center for the Human Rights of Users and Survivors of Psychiatry, www.chrusp.org, which she founded in 2009.

For additional writings, see https://uio.academia.edu/TinaMinkowitz and https://tastethespring.wordpress.com

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