Jolijn Santegoeds – Why forced psychiatric treatment must be prohibited

https://tekeertegendeisoleer.wordpress.com/2016/03/29/why-forced-psychiatric-treatment-must-be-prohibited/

Translation of Dutch article “Waarom gedwongen GGZ behandeling verboden moet worden”

Why forced psychiatric treatment must be prohibited
29 March 2016, by Jolijn Santegoeds, founder of Stichting Mind Rights[1], Co-chair of World Network of Users and Survivors of Psychiatry (WNUSP)[2], board member of European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP)[3]

Click here to download the article:
Why forced psychiatric treatment must be prohibited_29 March 2016

 

For centuries there has been resistance against forced admission in institutions, confinement in isolation cells, tying persons up with fixation-straps, the forced administration of medication, forced electroshocks, and other forced psychiatric treatments.

Coercion is not care
Coercion is one of the most horrific things that people can do to each other, while good care is actually one of the best things that people can offer to each other. There is a fundamental difference between coercion and care.

Coercion works countereffective to wellbeing, and leads amongst others to despair, fear, anger and grief for the person concerned. During coercion the voice of the person is ignored, and their boundaries are not respected. Coercion does not lead to more safety, or recovery of mental health. On the contrary: By suffering, powerlessness, and a lack of support, the risks for increasing psychosocial problems and escalation increase. Coercion is the opposite of care.

Coercion means a lack of care
Forced psychiatric interventions are not a solution, but are a problem for mental health care. For a long time, the existence of forced treatments, which enables caregivers to turn their back to the crisissituation and leave the person behind without actual support, is undermining the real development of good care practices.

Good care is possible
Good care can prevent coercion. By a respectful attitude and good support, problems and escalation can be prevented successfully, which makes coercion obsolete[4]. Real care is possible.

Efforts are needed
Despite the fact that all stakeholders in Dutch mental health care want to ban coercion[5], the total number of the use of coercion (the number of  legal measures RM and IBS) is rising annually. There are however specific initiatives to reduce coercion at various locations, such as the development of HIC (High/Intensive Care psychiatry)[6], where they aim to prevent solitary confinement by enabling intensive support. On the other hand there is an enormous rise in outpatient coercion (conditional measures), as well as in incidents with “confused people”. It has been concluded a number of times, that the practices are “persistent”, and that the culture is “hard to change”.

Learning from history
Europe has a long history of xenophobia against persons with psychosocial problems. Ever since the 15th century there have been special prison-like “madhouses”, where persons were chained and locked up like beasts, and exorcisms were common. After the discoveries of Charles Darwin and the Renaissance (17th and 18th century), the medical sector started to arise, followed by the arrival of the first Dutch Lunacy-law in the 19thcentury, which arranged “admission and nursing of lunatics in mental hospitals”, with the goal to provide “more humane” care as compared to the madhouses. The young medical science comprised a diversity of perceptions, and in the 20th century a lot of experiments followed, such as hot and cold baths, lobotomy, electroshock and so on. The “special anthropology”[7] or racial-science and eugenics, focussed on the search for the perfect human being, and “racial hygiene” to “avoid deterioration of the race”, openly doubting the capacities of certain populations, which resulted in genocide which didn’t spare psychiatric patients (WOII).

After these dark pages in history, universal declarations of human rights were established, emphasizing the value of each human being, and gradually the community became more tolerant. However, psychiatry hardly changed and held on to the questionable and experimental foundation, with confinement, regulation regimes, and experimental treatment methods as the unchanged core of the treatment range. Currently, efforts are still made to force persons into behavioural changes with the argument that they are “incapable of will” themselves, and not able to express preferences. This is absolutely incorrect: Every person sends signals. The challenge is to deal with that in a good way. Real care notices the person behind the behaviour. Professional care is something totally different than primitive repression of symptoms.

It is time to draw a line. It is urgently needed to recognize that mental health care got on a wrong track by history. Harsh ‘correction’ of persons until they are found ‘good enough’ is not a righteous goal of mental health care. It should be about wellbeing. Coercion is a revealed mistake of mental health care. Innovation is needed.

Worldwide need for coercion-free care
All over the world forced treatment exists. Extremely atrocious images are known from poorer parts of the world, with chained people for example in Asia[8] and Africa[9], but also in our own country with Brandon[10] and Alex[11]. As long as the western world keeps claiming that coercion is the same as good care, these scenes will be harder to ban, especially since several countries have high expectation of the western approach. It is important to come up with good solutions in the world wide search for coercion-free care.

Call by the United Nations
Since 2006, the UN Convention on the Rights of Persons with Disabilities (CRPD)[12]exists, which illustrates that a worldwide change is needed towards persons with disabilities. Several UN mechanisms clarify that coercion in care is a violation of human rights[13][14][15][16], also when it comes to the Netherlands[17][18]. A change is needed.

What’s next?
This is an important question.
What do we want now? Are we finally going to make it really right?
Are we going to show ourselves from our best sides?

A real change of culture is needed. Mental health care needs to reinvent itself, and put an end to the confinement and the use of coercion. Good care is possible.

“Yes but it is not possible…”
Commonly heard reactions are “These are good ideals, but not realistic” or “There is no other way, because the system isn’t supportive” or “The community is totally not ready for this”. The implicit assumption that a culture change would be ”unrealistic”, indicates limited perspective, hope and ambition. The system is in our hands. We are the current generation. Change is possible. The world is changing constantly. Also mental health care can change[19][20], as can the public opinion. We are not powerless or insensitive. Efforts are needed to make the world better and nicer together. We can do that.

Change can feel scary. Without positive history or good practices elsewhere it may be a bit harder to imagine that everything can be different, but this cannot be a reason to just give up immediately. We do not question ourselves whether stopping all hunger in the world is realistic before we start with that. Every person counts. Real care is possible and needs to be realized, also in acute and complex crisis situations. Practices of abuse need to stop instantly. This is the task that has been given to our generation. It is worth to unite all our efforts to make the historical shift from exclusion to inclusion.

Also the remark “Yes but coercion is needed, as long as there are no alternatives”  needs to be refuted here. Coercion is not care, but it is abuse, and there is no valid excuse for abuse. Coercion is never needed. Good care is needed.

Making human rights a reality
The UN Convention on the Rights of Persons with Disabilities (CRPD) gives a momentum for change. If everyone cooperates now, throughout all layers of the system, then the intended change gets an unprecedented impulse. The articles of the UN-Convention offer a guidance, which enables worldwide coherent action. The UN Convention offers vast opportunities to change the world.

Together we can ban forced psychiatric treatments. When there’s will, there’s a way. In history, confinement was put central, and by now we know better. So we have to do better too. A largely unexplored world is ahead of us.

Key points
It is not easy to change the mental health care system, and the confidence in mental health care doesn’t restore without efforts. Several things are necessary to change the situation sustainably:

-Realise good care
The old fashioned psychiatry is not founded on human rights, diversity and inclusion, but on xenophobia and exclusion. Science has focussed so far on homogenising the community, and attempts to change the people (a bodice and check box mentality). Modern mental health care should focus on enabling a heterogeneous and  diverse community, by creating the right conditions in the community and to enable self-determination, liberty and inclusion, so that everyone can be happy and live a fulfilling life in our community. A fundamental reform is needed in mental health care.

Wellbeing – or mental health – is a very personal intrinsic value, which cannot be produced by coercion. Recovery from psychosocial problems is not an isolated process of the person concerned, but is closely intertwined with the social context of the person, such as chances in life, social acceptance and inclusion. The range of care needs to be reviewed fully, and adapted to the requirements of today.

Deprivation of liberty needs to be stopped immediately. The organization of care of good quality is necessary and urgent, and cannot be postponed any longer. The previous guidelines under the law BOPZ of 1994 to use coercion “as little as possible” and “as short as possible” have failed obviously, and the numbers on the use of coercion (legal measures RM and IBS) continuously keep on rising annually, and have more than doubled in the past 10 years. This trend is unacceptable, and therefore something really needs to change now. A need for support cannot be a reason for deprivation of liberty. Good care is possible.

Without good care, the mess will only transfer. It is absolutely necessary to make all possible efforts right now to provide care of good quality, including good care in crisis situations.

– Legislation: prohibit coercion, arrange care
The legislation on forced psychiatric treatments needs to be changed. The goal of mental health care is not: Treating vulnerable persons in a rough way, but the goal is to provide good care, also in crisis situations. A transition is needed.

The lunacy law dates from 1841, from a time when the medical profession was absolutely in it’s infancy. The law BOPZ of 1994, and also the law proposal on Mandatory Mental Health Care (recent) have a similar structure of legal measures RM and IBS, and resp. confinement and forced treatment form the core. This system is not founded upon awareness of human rights, and it is not about care of good quality, and it has to change.

Forced treatment is abuse. Legislation needs to protect all citizens from abuse. When the government participates in the abuse against certain groups, this is torture[21][22], which is absolutely prohibited. The laws on coercion, such as BOPZ and the law proposal on Mandatory Mental Health Care are therefore unacceptable.

Legislation is meant to offer a fair framework for the community. A prohibition of forced treatments is necessary because of human rights[23]. Additionally, certain legislation can speed up the provision of good care and organize innovation[24]. It is possible to create laws that are really useful to the community. Wouldn’t that be great?

– Compensation: Recognize the seriousness
For years and years, the government and countless caregivers have taken over the lives of psychiatric patients, and forcefully subjected them to “care”, such as horrible forced treatment, isolation cells, forced medication, restraint-belts, electroshocks, all motivated by so-called “good intentions”. The sincerity of those responsible can now prove itself by genuine recognition of the suffering that many had to endure. A compensation would be appropriate: When you break something you have to pay for it. We consider that very normal.

* Apologies are needed to recover the relation between (ex-) users and caregivers.
* Recognition of the trauma’s by coercion, and support in overcoming these if desired.
* Compensation to show that the change of attitude is genuine.

Now it’s time to show that the Netherlands is indeed a civilized country.

Take action
I would like to call on everyone to contribute to the change in culture. Let’s ensure together that human rights will be realized for every human being, and that old-fashioned psychiatry disappears, and that mental health care only comprises good care.

Please spread this message to raise awareness.

 

**

To reinforce the above plea, I have attached a description of my personal experiences with forced psychiatry, which can be found via this link:

“16 years old, depressed and tortured in psychiatry – A testimony on forced psychiatric interventions constituting torture and ill-treatment”

 

**

This publication is part of the ‘Absolute Prohibition Campaign’, see https://absoluteprohibition.wordpress.com

 

[1] Actiegroep Tekeer tegen de isoleer! / Stichting Mind Rights www.mindrights.nl

[2] WNUSP: World Network of Users and Survivors of Psychiatry www.wnusp.net

[3] ENUSP: European Network of (Ex-) Users and Survivors of Psychiatry www.enusp.org

[4] Report: Best practices rondom dwangreductie in de GGZ 2011

[5] Declaration on reduction of coercion:  Intentieverklaring GGZ: preventie van dwang in de GGZ 2011

[6] High Intensive Care HIC (HIC)

[7] Description of Racial-science e.a.: Winkler Prins Algemeene Encyclopaedie, vijfde druk, Elsevier, 1936

[8] Human Rights Watch “Living in hell – abuses against people with psychosocial disabilities in Indonesia”, 2016

[9] Robin Hammond, fotoserie “Condemned – Mental health in African countries in crisis”

[10] Brandon van Ingen, Jongen al 3 jaar vastgebonden in een zorginstelling

[11] Alex Oudman, Schokkende beelden uit isoleercel – Toen en nu

[12] UN Convention on the Rights of Persons with Disabilities (CRPD)

[13] CRPD General Comment no. 1 on CRPD article 12 Equal Recognition before the law

[14] CRPD Guidelines on CRPD article 14 Liberty and Security of Person

[15] Statement of 2 UN Special Rapporteurs “Dignity must prevail – an appeal to do away with non-consensual psychiatric treatments” World Mental Health Day, 10 October 2015

[16] A/HRC/22/53 Special Rapporteur on Torture, Juan E Mendez, Torture in health care settings (2013)

[17] Communication sent to the Kingdom of the Netherlands by the UN Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment and the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health. AL Health (2002-7) G/SO 214 (53-24) NLD 2/2013, October 2013, https://spdb.ohchr.org/hrdb/24th/public_-_AL_Netherlands_08.10.13_(2.2013).pdf

[18] CAT/C/NLD/CO/5-6, CAT Concluding Observations on the Netherlands

[19] High Intensive Care HIC (HIC)

[20] Intensive Home Treatment (IHT)

[21] Torture, for full definitiion see article 1 CAT, Convention Against Torture.

[22] A/HRC/22/53 Special Rapporteur on Torture, Juan E Mendez, Torture in health care settings (2013)

[23] amongst others the right to liberty, freedom from torture / Civil and political rights and CRPD

[24] amongst others the right to health care and adequate standard of living / Social, economic and cultural rights and CRPD

 

ENUSP -Forced psychiatric interventions constitute a violation of rights and disable care

Human rights context

Since 2006, the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) calls for a paradigm shift to break away from paternalistic laws and paternalistic attitudes towards persons with disabilities, and shift to respectful support of decision-making based on the person’s own will and preferences. The implicit call of the UN CRPD to put an end to forced psychiatric treatments has been made explicit by several publications of the CRPD Committee, and especially by the Guidelines to Article 14. The Guidelines make clear that the detention of persons with psychosocial disabilities under domestic legislation on the grounds of their actual or perceived impairment and supposed dangerousness to themselves and/or to others “is discriminatory in nature and amounts to arbitrary deprivation of liberty.”[1]

 

Nevertheless, two UN treaty bodies currently are in conflict with the standards set by the UN CRPD: the Human Rights Committee[2] and the Subcommittee on Prevention of Torture (SPT) in their document “Rights of persons institutionalized and medically treated without informed consent”. Yet the Human Rights Committee admits that forced measures are harmful: “The Committee emphasizes the harm inherent in any deprivation of liberty and also the particular harms that may result in situations of involuntary hospitalization.” [3] The Human Rights Committee even recommends States parties “to revise outdated laws and practices” and says that “States parties should make available adequate community-based or alternative social-care services for persons with psychosocial disabilities, in order to provide less restrictive alternatives to confinement.” However, despite this, the Human Rights Committee acknowledges the possibility of forced measures, provided they are applied “as a measure of last resort and for the shortest appropriate period of time, and must be accompanied by adequate procedural and substantive safeguards established by law.”[4]

Also the SPT allows forced commitment and forced treatment, but they go even further by saying that abolition would violate the “right to health” and the “right to be free from torture and other ill-treatment”. For instance, the SPT states “…placement in a psychiatric facility may be necessary to protect the detainee from discrimination, abuse and health risks stemming from illness”[5], “The measure [treatment without consent] must be a last resort to avoid irreparable damage to the life, integrity or health of the person concerned…”[6]. In addition, the SPT acknowledges restraints as a legitimate measure: “Restraints, physical or pharmacological … should be considered only as measures of last resort for safety reasons”[7], and further allows for “medical isolation”[8].

It is interesting to note that before the publication of these two documents mentioned above, the thematic report “Torture in Health Care Settings” by the UN Special Rapporteur on Torture and other cruel, inhuman or degrading treatment or punishment (A/HRC/22/53), urged an absolute ban on forced psychiatric interventions, in order to ensure that persons with psychosocial, intellectual and other disabilities be free from torture and ill-treatment. However his voice apparently was not heard, as well as other voices documenting numerous violations of human rights in psychiatric institutions. One of them is the report of FRA issued in 2012, which reveals the trauma and fear that people experience, and states that “the extremely substandard conditions, absence of health care and persistent abuse have resulted in deaths of residents in institutional care.”[9]

 

Therefore, it can be seen that the arguments in favour of the administration of forced measures are based on false grounds, because as has been proven by numerous sources, including CPT reports and the sources mentioned above, psychiatric institutions in no case can be considered a safe haven from discrimination, abuse, torture and ill treatment. With regard to medical considerations and care we put forward the following:

 

Forced psychiatric interventions are not care.

Care is supposed to result in improved well-being and recovery. Well-being – or mental health – is a very personal, intrinsic value, which cannot be produced by force. Caring for one another is one of the best things that people can offer to each other. On the contrary, forced psychiatric interventions are very traumatizing, and result in suffering and more psychosocial problems. It makes the situation worse, and is amongst the worst things that people can do to each other. There is a huge difference between forced interventions and care. They are the total opposite of each other.

 

Forced psychiatric interventions disable care.

Forced psychiatric interventions are counter-productive to mental health and care, and represent a “breach of contact”. This can be seen on the one hand, for example, with nurses who stop trying to communicate or provide support, and resort to forced interventions. It can also be seen on the other hand, in the feelings of misunderstanding and trauma of the person subjected to forced interventions, which disable meaningful contact. It is obvious that good contact and communication are necessary for good mental health care. The end of communication, as is induced by forced psychiatric interventions, is a very harmful practice, which makes meaningful contact, and therefore mental health care in itself, impossible.

 

Forced psychiatric interventions do not result in safety.

Due to suffering, increased psychosocial problems, and a lack of any support for recovery caused by forced psychiatric interventions, the risks of escalation increase, and can even result in an endless circle of struggle and escalation, as our experiences show. The common argument given “to protect from harm or injury to self or others”, is not based on factual evidence supporting this statement. Forced psychiatric interventions do not result in more safety, but lead to more crises, and subsequently to greater risk of escalation.

 

Forced psychiatric interventions indicate a deficiency in mental health care.

Forced psychiatric interventions are more of a mechanism for (attempted) social control embedded within an underdeveloped and structurally neglected (and politically abused) system of mental health care that is built on the horrible remnants of the past, rather than on skills to support mental health and well-being. Underdevelopment and insufficient funding of the mental health care system is in place because of the extremely low political priority given to mental health care, consequently explaining the extremely low level of funding. It is impossible to deliver quality care without proper funding and attention to quality standards. However, due to historical stigma, mental health care remains unpopular with society, i.e. voters, and therefore politicians. In case of dire shortage of funding, the best possible solution for the system is to keep things calm, by delivering lots of harmful and in many cases unwanted medication to isolated people and calling it medical care. However, real mental health care is possible when efforts are made and sufficient funding is provided.

 

A world of options between “last resort” and “no care”

Many persons, including many States, cannot see beyond a very narrow “black and white” approach regarding psychosocial crisis situations, with only two options: either forced treatments (torture), or doing nothing (neglect). This simply isn’t the full picture. Between these two extremities, there is a largely undiscovered world of options for real support and real mental health care in psychosocial crisis-situations, with aspects such as: non-violent de-escalation, prevention of crisis in the earliest stage possible, focussing on contact and openness instead of repression, building trust and providing real support in acute crisis-situations. (Ex-) users and survivors who have experienced this are the best positioned to be involved in this shift of paradigm.

 

Real development of mental health care is urgently needed.

Unfortunately for decades, the real development of good care practices has been undermined by the existence of forced treatments, which has enabled caregivers to turn their back to the crisis situation, and leave the person behind without actual care, repressed and stripped of their dignity. This should stop. Forced psychiatric interventions constitute a very serious human rights violation. They can never be called care and cannot be considered a safety and anti-discrimination measure, because they lead to exactly the opposite.

 

We believe in the creative potential of humanity and the possibility to solve complicated problems when appropriate efforts are made. But in order to allocate the appropriate resources and generate enough creative efforts, appropriate motivation is needed. The UN CRPD standards give us and should give policymakers such motivation to realize and state publicly that the status quo in psychiatry is totally unacceptable and must be changed to a humane system of real care.

 

The discrepancies in the recommendations referred to above, even among different entities of the same organization (United Nations) must be eliminated and the provisions of the CRPD must prevail.

 

This is a challenge, but by thinking and acting together, it is possible to make this a reality.

 

We must keep in mind just one thing as a basis for this objective:

 

 

Forced psychiatric interventions constitute torture and ill-treatment and

must be banned!

 

 

 

 

 

 

 

[1] CRPD Committee’s Guidelines on article 14 Liberty and security of person, III, para.6 (September 2015)

[2] General Comment No.35, para.19 (30 October 2014)

[3] Ibid.

[4] Ibid.

[5] SPT, Rights of persons institutionalized and medically treated without informed consent, para.8

[6] Id. para.15

[7] Id. para. 9

[8] Id. para.10

[9] European Fundamental Rights Agency: Involuntary placement and involuntary treatment of persons with mental health problems, 2012. Available at: http://fra.europa.eu/sites/default/files/involuntary-placement-and-involuntary-treatment-of-persons-with-mental-health-problems_en.pdf

Sarah Knutson: Einstein, Social Justice and the New Relativity

Sarah Knutson’s second post for the Campaign.  Original is on Mad in America.

To create his theory of relativity, Einstein had to see things differently.  He had to view the universe not as an object of mammalian proportions, but from the perspective of a subatomic particle.  Essentially, he used imagination and empathy to come to know a new ‘reality’ of existence.

This essay is the second in a series.  We previously outlined a rationale for a 100% voluntary mental health system (read about it here). Now, we take a deeper look at the nature of human experiences that lead to public concern.  We delve deeply into the perspective of that experience and discover ourselves in a whole new realm.

Three ways of seeing experience

To understand where we are going, let’s first take a look at where we’ve been.  Here are some competing models for approaching socially troubling human experiences.

1. The DSM Model of ‘mental disorders’

The DSM Model is based on the Diagnostic and Statistical Manual of Mental Disorders published by American Psychiatric Association.  In no small part, the DSM has been the product of insider turf wars, political compromise, industry needs and billing concerns.(1) It is said to be atheoretical, but unquestionably the DSM views certain aspects of human experience as abnormal/ disorders.  Possibly, this is just a nod to the practicalities of healthcare reimbursement.  However, the process of distinguishing the truly abnormal (insurance pays) from the common effects of a stressful life (you pay) has left something to be desired.

Rote symptom checklists determine whether your anxiety, mood, grief, trauma, substance use, sexuality is ‘normal’ or ‘disordered.’  At a minimum, this is a lousy way to get to know another human being on the worst day of their life. Painful experiences, like getting fired, ending up homeless or being raped in shelter housing are routinely ignored or overlooked. It’s like the teacher pronouncing you ‘learning disordered’ without asking if you studied.

Reliability and validity have proved problematic as well. Individual diagnoses tend to vary, as do predictions of violence and suicide.  Given that single bad call can change the course of a lifetime, concerns like these led whistleblower Paula Caplan, Ph.D., to report to the Washington Post in 2012: “Psychiatry’s bible, the DSM, is doing more harm than good.”  A year later, the National Institute of Mental Health (think science, research, evidence-based) went on record as looking for a more valid approach (full statement here).

2. The Medical Model of ‘mental illness’

In contrast to the DSM, the Medical Model has a crystal clear vision.  ‘Mental illness’ is a real disease.  It is caused by pre-existing genetic, biochemical or physiologic abnormalities. Those affected are susceptible to disregarding personal welfare or that of others. Aggressive treatment (drugs, CBT) is required to correct or mitigate deficiencies.

For all its theoretical congruence, the medical model hasn’t fared much better than the DSM. Treating ‘mental illness’ takes a whopping 15-25 years (on average!) off of the average life span.  The promised ‘chemical imbalances’ and bio-markers still haven’t materialized in the research.  Disability rates have sky-rocketed. Long-term outcomes and relapse rates have worsened overall. (2)  Many suspect that prescribed drugs increase violence and suicide.

3. The Social Justice Model of fundamental human needs

This model comes in no small part from the learnings of World War II, the Holocaust, Hiroshima, and Nagasaki.  In the aftermath of atrocities, the nations of the world were interested in figuring a few things out.  They needed a way for those on all sides to move forward.  They wanted to set the stage for ‘never again.’  Their solution was the Universal Declaration of Human Rights of 1948 (UDHR).

The UDHR is premised on a simple idea.  For all our differences, human beings have much in common.  We all need certain things to live and be well:

  • nutritious food, habitable shelter
  • safety of person and property
  • dignity, respect and fair treatment
  • meaningful participation and voice
  • support for families to stay together and make a living
  • opportunities to develop ourselves across major life domains
  • freedom to make sense of experience in our way

Under the UDHR, advancing human rights is a universal, non-delegable obligation. Everyone everywhere is responsible for doing their part.  The peoples of the world understood that the basic requirements for human dignity must be accessible to all.   Without such access, neither individuals nor the human family as a whole will be well.

The theory of human conflict follows from this.  Under the UDHR, conflict arises when human needs are in competition.  It intensifies with time if only some of us have access to what all of us need.

Preventively locking someone up or drugging them against their will is a considerable human conflict. To meaningfully address such issues, the Social Justice Model counsels us to take a step back.  Those we are fearing (sick, disordered, untrustworthy) may be messengers, not madness.  Instead of privileging our perspective, what if we try to see the world through the other’s eyes:

  • Is it possible their experience might not be as senseless it seems?
  • Is it possible they may be expressing a history of social harms, rather than arbitrarily bent on inflicting new ones?

Before you immediately brush this off, consider the following:

If the nations of the world could adopt these attitudes in the aftermath of Hilter, concentration camps, kamikaze pilots and detonated atom bombs, then why not for modern public safety concerns?  

Support for the Social Justice Model

Nearly 70 years ago, the United Nations predicted the following (UDHR Preamble):

  1. ‘[R]ecognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.’
  2. People everywhere long for a world in which ‘freedom of speech and belief and freedom from fear and want’ are the order of the day.
  3. ‘t is essential, if man is not to be compelled to have recourse, as a last resort, to rebellion against tyranny and oppression, that human rights should be protected by the rule of law.’
  4. ‘[D]isregard and contempt for human rights’ leads to ‘barbarous acts’ that ‘outrage[] the conscience of mankind.’

Now consider this:

1. Research on public and behavioral health impacts

An estimated ninety (90!) percent of those in the public mental health system are ‘trauma survivors.’  We have grown up without reliable access to same basic needs that the United Nations recognized as essential over six decades ago.

The same applies to the other so-called ‘problem’ groups in our society.  Yep, ninety (90!) percent or more of us in substance use, criminal justice, and homeless settings are ‘trauma survivors’ as well.

This is not just about individual needs, but also family needs and the needs of entire communities. These issues affect all of us across demographics.

Don’t believe it?  Check out the following:

  • National Association of State Mental Health Program Directors (NASMHPD), The Damaging Consequences of Violence and Trauma: Facts, Discussion Points, and Recommendations for the Behavioral Health System (2004). Full report here.
  • National Council for Behavioral Health (Breaking the Silence: Trauma-informed Behavioral Healthcare (2011). Full publication here.
  • Nadine Harris, MD, How Childhood Trauma Affects Health Across a Lifetime (TED Talk here.)
  • Substance Abuse and Mental Health Administration, SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach SAMHSA (2014). Full proposal here.
  • The School of Life, Sanity of Madness (1/18/2016). Full video here.

Yet, for all the fanfare about the need for more ‘trauma-informed care’, there has been little systemic response directed toward basic human needs.  Equally disturbing, behavioral health system involvement has become an independent, exacerbating source of harm for many.

The results speak for themselves.

2. Tremendous explanatory power

In addition to the public health data, the Social Justice Model has tremendous explanatory power.  It offers a straightforward way to make sense of experience (this essay), as well as principled ways to respond (future essay) that could easily be confirmed – or refuted – by research (future essay).

The basic paradigm is this:

  1. Resources are seemingly scarce
  2. People have basic needs
  3. They see a threat or opportunity
  4. This sets off a ‘high-stakes’ (aka ‘survival’) response
  5. Predictable physical, mental and social effects occur.

The above theory draws on work that has already been done.  In the trauma field, the human survival response (fight, flight, freeze) and its effects are widely known. See, e.g., ‘The Body Keeps Score‘ by Bessel van der Kolk.  As it turns out, you can tweak the same theory to make sense of a broad variety of human experiences that lead to public concern.

3. The ‘normal’ response when the stakes are high

For our purposes, there are two basic nervous systems:

(1) ‘All-is-well’ (parasympathetic) for everyday routines. This covers stuff like eating, sleeping, relaxing, hanging out, having sex, small talk, hobbies, tinkering around…

and

(2) ‘High-stakes’ (sympathetic/ ‘survival response’/ fight-flight-freeze) for responding when the stakes are high.  This is the ‘get your butt in gear’ reaction that takes over when something feels like a big deal.

High-stakes can get involved in all kinds of stuff.  This includes both threats and opportunities.  The critical factor is that (from the person’s point of view) the stakes are high.  For example, here are some things that can set off the high-stakes response for me:

  • Discovering new possibilities, new gossip, twenty dollars or my cat in the road
  • Taking tests, exams, the best donut or advantage of someone else
  • Scoring a point, contract, bargain, victory or high
  • Getting paid, laid, yelled at, ripped off, excluded, assaulted or stopped by police
  • Going on first dates, adventures, job interviews or a personal rampage
  • Performing on the job, in sports, in college, during public hearings or psychiatric exams
  • Resisting temptation, peer pressure, arrest, detention or a doctor’s opinion

Suffice it to say, the definition of ‘high stakes’ is a personal matter.  It depends on what you have lived or come to know.  Thus, one person’s ‘high stakes’ might not even register on another’s radar.

4. Explaining intense or extreme responses

To discover relativity, Einstein had to take the perspective of atoms.  To see the value of high-stakes responses, we have to experience what is happening from the high-stakes viewpoint.

When the stakes seem high, human beings are wired to respond in one of three ways:  fight, flight or freeze.

  • Fight’ goes after threats and opportunities.  It takes them on or brings them down.
  • ‘Flight’ avoids threats and opportunities.  It gets away (runs, hides) as fast as possible.
  • ‘Freeze’ hides in plain sight.  It shows no apparent reaction (de facto disappears), giving others nothing to notice or chase.

Despite their clear-sounding names, fight, flight and freeze are not fixed forms of expression.  They are directional tendencies that can occur across many life dimensions. This allows personal strengths, past experiences and familiar (‘tried and true’) behaviors to be optimized for survival value.  Here are some ways that I have expressed fight-flight-freeze when the stakes felt high to me:

 


Dimensions of Fight-Flight-Freeze

  • Physical
    • fight: striking out, yelling, swearing, telling someone to ‘get out! breaking stuff
    • flight: leaving the room, not showing up, running away, cutting, trying to kill myself
    • freeze: doing nothing, hiding in bed
  • Emotional
    • fight: raging, hating, envying, craving
    • flight: avoiding, cowering, dreading, numbing with food, drugs, sex, spending, computer, games
    • freeze: poker face, going numb
  • Social
    • fight: verbally attacking, ridiculing, blaming others, complaining, rescuing
    • flight: obeying, begging, flattering, apologizing, backtracking, blaming self, compensatory romantic interest
    • freeze: saying nothing, playing along, going with the flow, withdrawing
  • Intellectual
    • fight:  arguing, planning, plotting, obsessing, out-smarting
    • flight: distracting, fantasy
    • freeze: forgetting, going blank
  • Spiritual/ existential
    • mostly fight:  praying, seeking visions, looking for signs, exploring energy, becoming a deity
    • mostly flight: bargaining with God, trying to be a good person, wishing I were dead
    • freeze: losing time/ awareness/ consciousness

(Please note: Depending on context and underlying intent, the same response may fit in multiple categories.)


 

The wide variability of high stakes responses is a tremendous asset to our species.  It ensures that people will respond in numerous rich and creative ways.  When an entire community is facing a threat, this promotes resilience and survival overall. If we all responded the same way to danger or opportunity, a single threat (predator, disease, disaster) could wipe us out. We need the extremes that people tend to under stress to safeguard group survival.

On the other hand, when the stakes are seemingly individual, the virtue of diversity can get obscured. Since only one person is reacting, this can look rather odd to everyone else. Imagine Beatlemania, but only you can see the Beatles. Visuals here if you need them (with a little help from my friend, JH).

It’s also worth noting that there is a dose-response effect.  In other words, the higher the stakes and the longer I’ve been in that frame of mind,  the more intense or extreme my responses tend to get.  Over time, this has become a good way for me or others to gauge how important the needs involved are to me.  For example, if things seem relatively manageable, then my responses tend to be manageable – both by me and others.  On the other hand, if I can’t imagine living or being happy if the needs aren’t met, my responses tend to flair accordingly.

 

6. ‘Sarah, are you calling inappropriate the new normal?’

If you are nodding along with me at this point, thank you for getting it!  On the other hand, if you are feeling confused or disgusted, you are not alone.  Clearly, my experiences violate conventional norms. They routinely get seen as unacceptable, disordered or ill.

On the other hand, like the vast majority of the world, you may be seeing my life from an ‘all-is-well’ perspective.  And, for ‘all-is-well’ living, my responses sure aren’t the norm.

But that is precisely the point I am trying to make.   In behavioral health populations, all-is-well is not the norm.  The norm in behavioral health populations is violence, deprivation, poverty, injustice, and marginalization. In other words, the stakes are high all the time. Problems build on each other, then compound exponentially.  We rarely, if ever, get a break.  We feel like we constantly have to defend our right to be.  In dose-response terms, the dose is enormous.  So, predict a pretty big response.

From my experience, despite a lifetime of trying to learn how to do it differently, that is what keeps happening.  But don’t just take my word for it.  Here is 18-year-old Sabrina Benaim“Explaining My Depression to My Mother.”

And before you say, stop making excuses for yourself and take a little responsibility, consider the following (apart from the 20 years of therapy, thousands of dollars out of pocket, 20+ drugs tried, studying this stuff at the doctoral level, devoting my life to trying to understand it):

There is a really good reason that high-stakes responses are hard to turn off:  Any conscious, reality-based human being should be bothered by high-stakes conditions.  As a practical matter, the high-stakes response is a message. It is like your hand burning on a hot stove. The intense feeling (pain) tells you to move your hand. This prevents further damage. If you just rationalize or drug that sensation away, there is no telling how bad you’ll end up.  (We have the scars to prove it.)

Equally important, it is not an accident that high-stakes responses come across as ‘inappropriate’ and alarming. This is by nature’s design, and it serves a dual purpose:

  1. Predators/ competitors are unable to anticipate or plan for what we’ll do.
  2. Well-intended others will know that something is wrong.

Hence, while high-stakes responses no doubt alarm and baffle others, that is why it has actual survival value.

This highlights the futility of trying to classify so-called ‘mental disorders’ in a high-stakes population. The very purpose of our responses is to defy explanation. Outsiders are not supposed to know what is going on.  It’s a plus, not a minus when potential predators can’t agree.

The same survival function also explains why observers find these responses so distressing.  High-stakes responses are supposed to cause alarm. This scares outsiders off and alerts those close to us that all is not okay.  If society worked the way nature intended, the outcome would be great.  Opportunists are deterred.  Allies rush to your aid.  Real friends stick around and try to find a way to help.

That’s also a message for would-be helpers.  The assessment tool is built right into the high-stakes system.  The rules are fairly clear if you know what to look for:

 


High Stakes Rule #1: When something makes it worse, the stakes go up, and responses get increasingly extreme.

High Stakes Rule #2: When something makes it better, the stakes go down and all-is-well eases in over time.


 

In other words, the so-called ‘ravings of lunatics’ are actually  ‘rational’ from a high-stakes perspective. They scare off opportunists, attract available allies and weed out would-be helpers who don’t help. If no help is found, they keep us alive and free to keep looking.

From this vantage point, perhaps now you can appreciate the violence – the actual soul torture – of forcing survivors to present as if ‘all-is-well.’  Not only does that obliterate what we have experienced, it takes away what is often the only means we have to communicate our pain to the culture at large.

Suffice it to say, given the state of the world today, you should find us painful to be around.  You should find it difficult if asked to bear witness. That is what puts your hand on the stove burning with ours. That is what motivates you – everyone – to look for the source of the burning.  That is what makes it possible for human beings, in the spirit of Einstein — to get curious about the little guy, wonder what it is like to feel that small and discover a whole new reality outside of ordinary vision.

With the benefit of hindsight, what do you say we also look for a better energy source to power human relationships?  Instead of splitting dissenters off or leveling resistance, how about this time we stick with imagination and empathy and learn to create a  workable, honest fusion?

References:

(1) Caplan, PJ (1995) They Say You’re Crazy: How The World’s Most Powerful Psychiatrists Decide Who’s Normal  (Perseus Books: http://www.aw.com/gb).

(2) Whitaker, RH (2010). Anatomy of an Epidemic. New York: Random House.

This blog is a contribution to the Campaign to Support the CRPD Absolute Prohibition of Commitment and Forced Treatment. To see all of the Mad in America blogs for this campaign click here.