https://www.reimaginingcrisissupport.org/
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:
Acknowledgement
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:
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.
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
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