Aporte a la Campaña por la “Prohibición Absoluta en la CDPD de los Tratamientos Forzosos y los Internamientos Involuntarios”: María Teresa Fernández (México)

https://sodisperu.org/2016/03/14/aporte-a-la-campana-por-la-prohibicion-absoluta-en-la-cdpd-de-los-tratamientos-forzosos-y-los-internamientos-involuntarios/

La institucionalización de personas con discapacidad es una declaración de incompetencia de las autoridades gubernamentales y de las sociedades frente al fenómeno que representa la existencia humana. Una declaración de soberbia supina y de falta de voluntad; también, de indolencia, y también, de impunidad. Nos atribuimos la facultad de decidir si una a una de estas personas debe vivir, y cómo; o debe morir – y literalmente – encerrada entre muros estrechos e indiferentes, atada a una cama, un catre, un poste; sometida a un medicamento o a un cierto trato, el que nos venga a bien dispensarle; reducida y frustrada en sus posibilidades y sueños, sin más compañía que su propia intimidad diferente y asustada. Y nos creemos juiciosos, protectores, responsables – éticos. Nos decimos humanos y nos damos baños de pureza. Mejor sería hacerlo en el Ganges.

Mi hermano fue diagnosticado con epilepsia cuando entró en la adolescencia. Se hizo alcohólico después. Me llevaba 18 años. Fue internado varias veces en distintos centros, hospitales y “granjas”. Cada vez que salía – de más en más aminorado – había perdido algo nuevo: el brillo de sus ojos, su sonrisa franca y espontánea, alguna más de sus ganas de vivir.

Y sin embargo seguimos. Seguimos sin prestar atención a lo que filósofos, teólogos, humanistas, han venido repitiendo a lo largo de la historia: el ser humano – como sus expresiones y manifestaciones – es único e irreductible, como inagotable es su potencial de existencia. Nuestra pequeñez y cortedad de miras – aunadas a nuestras ansias de “normalidad”, de resultados y de eficacia; de absurdos absurdos, pues – no alcanza, siquiera, a preguntarse lo que esas cualidades de “único” y de “irreductible”, en relación con la persona humana, puedan significar.

Si no, ¿por qué, a pesar de los tantos “avances”:  científicos, tecnológicos, garantistas de derechos, seguimos sin ser capaces de aceptar que el ser humano tiene una existencia “condenada a abrir caminos siempre nuevos y siempre sorprendentes”[1]?, ¿por qué no nos permitimos el diálogo posible – y promisorio – con las diversas percepciones y expresiones humanas de la realidad?

Cuando un niño es inquieto, o “de más” ; o un adolescente, desinteresado, o su respuesta es glacial; cuando una mujer rompe en llanto, o monta en cólera, ante – decimos – “la menor provocación”, no tardamos en enjuiciar su conducta, y diagnosticarla, y patologizarla; no sólo su conducta, su ser por entero. Son pocos y cortos los pasos para transitar del juicio al diagnóstico y de ahí a la etiqueta – que lo será, ya para siempre, incuestionable e inamovible; y luego, a la medicalización, y al mismo tiempo, o poco después, al encierro. Y en este apresurado camino nos hemos olvidado:  de él, de ella, de la persona humana que ahí vivía.  Ya hemos llegado – y con plena conciencia – al umbral. Es la muerte. Una muerte que  – pareciera que confiamos – todo lo resolverá; o por lo menos, hemos logrado que así pensando y haciendo todo se resuelva, al menos, para nosotros. La impunidad.

Cada vez que mi hermano salía de uno de esos encierros nos decía que no quería más: que se lo llevaran, que lo encerraran, que lo amarraran, que lo durmieran, que le aplicaran electro shocks. Que lo mal trataran, que lo desnudaran, que lo despojaran, hasta de su dignidad. Era intolerable. Era ominoso. Yo era muy joven. Hoy tengo 64 años. Hace 40 que mi hermano murió en uno cualquiera de esos hospitales. Sigue vivo en mí.

Estos años me han servido para aprender que a quien le importa lo humano, se propone indagar lo que hay ahí adentro de ese otro, también humano. Descubrir su razón, su interés, su necesidad, su intención, su propuesta, su expresión – diferentes. Y vestir su piel. Y estar dispuesto a moverse y a tender puentes – y cruzar esos puentes.

Por eso me pareció extraordinario que el proceso de negociación de lo que llegaría a ser la Convención de Naciones Unidas sobre los derechos de las personas con discapacidad (CDPD, 2006),[2] hubiera asumido ese reto:  abrir sus puertas – y poner oídos atentos – a lo que las propias personas con discapacidad psicosocial tenían que decir sobre ellas mismas: que son seres humanos, iguales, íntegros e integrales, redondos; formados e  informados; presentes, pensantes, sintientes, activos y comprometidos; con las mismas necesidades y búsquedas de cualquier otro ser humano – y con los mismos derechos y obligaciones; y aún así, cada una y cada uno, con maneras y expresiones distintas, únicas, propias, privadas: las suyas. Como usted, apreciable lector; como yo también, y como todas y todos. Y tan así, que la intervención de estas personas con discapacidad en las negociaciones para la Convención conmocionó – impactó –, y fue capaz de crear posibilidades nunca antes vislumbradas, para ellas, para las y los demás: Un camino al diálogo real con la diversidad.  El inicio de un movimiento franco hacia la aprehensión – y la inclusión – de formas variadas de ser y estar en el mundo. Para desde ahí, aprender. Y desde ahí, convivir. Desde ahí, transformarse y transformar.

Hasta entonces, no había pasado todavía que alguien defendiera públicamente, y con tanta fuerza y claridad, que no es posible vivir ignorando o aniquilando a seres humanos, y por el simple hecho de no ser capaces – nosotros – de inteligir sus maneras; o porque molesta que griten fuerte y disonante cuando el mundo les duele; o porque amenazan los referentes de los útiles y cómodos statu quo.

Las personas con discapacidad psicosocial desmantelaron  – en y con la Convención – uno a uno de los mitos que nos hemos fabricado sobre ellas: su indefensión, su fragilidad, su “peligrosidad”; su incapacidad: de tomar decisiones, de asumir obligaciones y responsabilidades; de vivir en este mundo y atreverse a cuestionarlo; de aportar, de enriquecer-nos.  No es gratuito, entonces, que – en y desde la Convención –, no quepa más hacer distingos sobre ellas. O no, si para atentar en contra de su dignidad, o para propiciar que se vulneren sus derechos; tampoco para someterlas a escrutinios y valoraciones groseras, autoritarias y sin fundamento, o al menos, moral. O para que alguien pueda atribuirse la facultad de poder decidir a su juicio lo que mejor les conviene, o de recluirlas en instancias en las que todo lo pierdan, incluso su autonomía y su libertad; incluso su dignidad.  Lugares donde queden – sometidas e impotentes – bajo el control absoluto de otra u otras voluntades – nunca la suya – y se lacere su integridad. ¿Qué razón – y qué derecho – le asiste: al Estado, a los profesionales de la salud, a las familias, a la sociedad en general, para permitirse un acto semejante?, me pregunto y se lo pregunto, sí, a usted, apreciable lector o lectora.

Todas las personas con discapacidad han sido reconocidas por la Convención con la misma dignidad y derechos que el resto de las personas.  Derechos de las personas con discapacidad – “incluidas aquellas que necesitan un apoyo más intenso” (Preámbulo CDPD, inciso j)) – son que se respete su dignidad y su valor; que se respete y aprecie su diferencia, tanto como su autonomía, su independencia y su libertad para tomar sus propias decisiones  – incluso, cuando estas decisiones puedan no coincidir con las nuestras, o nuestras opiniones y creencias – o nuestra voluntad; o nuestros intereses. Es también un derecho de todas las personas con discapacidad –reconocido por la Convención– que se les proporcionen los apoyos que ellas estimen necesitar para tomar sus propias decisiones (Artículo 12.3 CDPD), incluida la de dónde y con quién vivir, y sin que se vean obligadas a vivir con arreglo a un sistema de vida específico (Artículo 19. a)CDPD). También es derecho de ellas disponer de los servicios de apoyo que faciliten su existencia y su inclusión en la comunidad y eviten que se les separe o aísle de ésta (artículo 19. b) CDPD).

El Comité de Naciones Unidas sobre los Derechos de las Personas con Discapacidad (CRPD), en su Observación General No.1,[3] ha abundado sobre el alcance del derecho de las personas con discapacidad a tomar sus propias decisiones y que éstas sean respetadas: “en todo momento, incluso en situaciones de crisis, deben respetarse la autonomía individual y la capacidad de las personas con discapacidad de adoptar decisiones,” (O.G.No.1 CRPD, Párr.18). También ha afirmado que entre estas decisiones se incluyen aquellas “decisiones fundamentales con respecto a su salud” (O.G.No.1 CRPD, Párr. 8); y más específicamente, el Comité ha reconocido el derecho de las personas con discapacidad a no ser internadas contra su voluntad en una institución de salud mental y a no ser obligadas a someterse a un tratamiento de salud mental (Artículo 14 CDPD) (O.G.No.1 CRPD, Párr. 31). También el Comité CRPD ha dejado en claro que todas las formas de apoyo en la toma de decisiones que las personas con discapacidad opten por recibir, “incluidas las formas más intensas, deben estar basadas en la voluntad y las preferencias de la persona, no en lo que se suponga que es su interés superior objetivo.” (O.G.No.1 CRPD, Párr. 29, Inciso b)).

Lamento profundamente que nada de esto fuera del dominio público cuando yo era niña. Cuando mi madre, al no disponer de los recursos necesarios: información, asesoramiento, apoyos y servicios – porque no existían, o eran inaccesibles – no encontró mejor opción para él, para ella y para mí, que poner a mi hermano a disposición de los médicos. Ella creyendo que sabían lo que era debido hacer; ellos alegando saberlo, a pesar de que un número incontable de historias – entre las que después se contaría también la de mi hermano – testimoniaban fehacientemente lo contrario.

Gracias a mi involucramiento con los procesos sobre la Convención de Naciones Unidas sobre los Derechos de las Personas con Discapacidad, he aprendido que es éticamente insostenible pretender – usted, yo, los gobiernos y las sociedades – seguir ignorando las incuestionables e infinitas realidades y posibilidades humanas. Que es inadmisible seguir apelando a maneras arcaicas y lugares comunes para enmascarar nuestra incapacidad de derribar barreras, estigmas y prejuicios, o nuestra falta – evidente – de voluntad. Como la que reconoce el valor de otras existencias y mantiene con ellas interacciones fecundas; la que incursiona en nuevas formas de acercamiento a las situaciones y de brindar atención y cuidados.

Hace 40 años no existían los servicios y los apoyos que habrían llevado la historia de mi hermano por otros caminos, hoy lo sabemos, menos crueles y fatales; que habrían permitido que él – con la debida asistencia – encontrara sus propias respuestas.  Al día de hoy, esos servicios y esos apoyos siguen sin estar disponibles, o aquí, en mi país. A saber a cuántas más vidas les han hecho falta también para crearse y recrearse a sí mismas; a cuántas personas más su inexistencia las sigue condenando al olvido – o a la muerte. De las grandes claves para el cambio, y algo tan sencillo y a la vez tan crucial para producirlo, hoy sigue sin ser habitado; sin siquiera ser explorado; o aquí, en mi país. Esto también es inaceptable.

Es por todo eso que yo me pronuncio – y decididamente – por la “Prohibición Absoluta en la CDPD de los Tratamientos Forzosos y los Internamientos Involuntarios”. 

Porque, en resumen, considero que estas prácticas:

  • Son reductivas de la persona humana y de la situación existencial que experimenta;
  • Van contra la dignidad, la autonomía y la libertad de las personas con discapacidad (Art. 3 CDPD);
  • “Medicalizan” problemas que son de índole social, en los que intervienen otros elementos contextuales: familiares, sociales, e incluso políticos, que entonces son ignorados, desatendidos y perpetuados; incluso, profundizados;
  • Son invasivas, autoritarias y jerárquicas, al aplicarse a las personas aún en contra de su voluntad;
  • Son cuestionables en sus fines, en sus efectos y consecuencias – muchas irreversibles y fatales –, y en su efectividad.
  • Refuerzan los estigmas y prejuicios sociales sobre las personas con discapacidad psicosocial, al utilizar categorías diagnósticas que – además de cuestionables – encasillan arbitraria y vitaliciamente a las personas, haciéndolas vulnerables a la exclusión, a la discriminación y a la muerte – la social, la biológica;
  • Son violatorias de derechos inalienables de las personas con discapacidad como, entre otros, el derecho a no ser privadas de su libertad por motivo de discapacidad (Art. 14 CDPD); el derecho a otorgar su consentimiento libre e informado sobre los tratamientos médicos que se le propongan (Art. 25. Inciso d)); el derecho a la integridad física y moral (Art. 16); el derecho a vivir de manera autónoma e independiente en la comunidad y a ser incluida como parte activa y necesaria de ella (Art.19 CDPD).

Con mi pronunciamiento en apoyo a la “Prohibición Absoluta” quiero honrar la memoria de mi hermano, sí; pero también porque yo misma soy persona con discapacidad, en mi caso motriz, y sé lo que es y significa ser discriminada y excluida por tener una discapacidad. Pero, además, porque si bien he logrado evitar ser diagnosticada o etiquetada como persona con discapacidad psicosocial, yo también encuentro muy difícil lidiar con los tantos absurdos de nuestro mundo, y acomodarme, y cada vez, en alguna de sus escasas y limitadas formas permitidas de ser y de estar en él.

Y porque sueño.  Sueño con una humanidad polifónica y multiforme; lo suficientemente abierta, crítica y dialogante para permitirse tender hacia la otredad, en lugar de ignorarla, repudiarla o temerle; una humanidad que sabe vivir junto al otro y crear –con él–  realidades e intercambios nuevos, permeables, interdependientes, nutricios. Sueño mujeres y hombres convencidos de que toda y cualquier expresión humana – por ajena o chocante que nos resulte o parezca – no puede, al final, sino complementarnos, fortalecernos, enriquecernos.

Y porque sé que tarde o temprano así se habrá demostrado.


[1] Boff, Leonardo. Tiempo de la trascendencia, el ser humano como un proyecto infinito, Santander, Sal Terrae, Brasil, 2000.
[2] ONU, Convención sobre los Derechos de las Personas con Discapacidad, Resolución A/RES/61/106, Sexagésimo primer período de sesiones, Asamblea General, Naciones Unidas, del 13 de diciembre de 2006. Entró en vigor el 3 de mayo de 2008. Disponible en: http://www.un.org/disabilities/documents/convention/convoptprot-s.pdf
[3] ONU, Observación General No.1 (2014) sobre el Artículo 12: Igual reconocimiento como persona ante la ley, Comité sobre los Derechos de las Personas con Discapacidad, 11º período de sesiones. ONU Doc. CRPD/C/GC/1, del 19 de mayo de 2014.

Pueden leer más de la Campaña #ProhibiciónAbsolutaen: https://absoluteprohibition.wordpress.com/ 

Paula Caplan – Myths are Used to Justify Depriving People Diagnosed as Mentally Ill of Their Human Rights

http://www.madinamerica.com/2016/03/myths-are-used-to-justify-depriving-people-diagnosed-as-mentally-ill-of-their-human-rights/

Who in this world ought to have the right to make decisions about their lives, and who is required to lose that right and have the medical community and the courts take over?

Despite the fact that no one in history, not even the omnipotent American Psychiatric Association — which produces and profits mightily from the “Bible” of mental disorders — has come up with a halfway good definition of “mental illness,” and despite the fact that the process of creating and applying the labels of mental illness is unscientific, any of those labels can be used to deprive the person so labeled of their human rights. This is terrifying. It ought to terrify those who are so labeled and those who are not, because deprivation of human rights on totally arbitrary grounds is inhumane and immoral.

The combination of the specter of terrorism and highly publicized incidents of gun violence have led rapidly to politicians, therapists, and the general public blaming “the mentally ill” for these dangers, and that is used to justify depriving not just terrorists and other killers but anyone with a label of mental disorder of their rights. They can be locked up against their will, they can be ordered to comply with just about anything that a professional calls “treatment of the mentally ill,” no matter how these actions can harm the person and in the absence of scientific evidence that the “treatments” of people who have been psychiatrically labeled will prevent violence. In other words, the huge leap is often made from “This person has a psychiatric label” to “This person is therefore dangerous to themselves and others,” even in the absence of any history or current indication of such dangerousness, and that leap is then used to lock people up and/or otherwise “treat” them against their will.

Now the United Nations human rights treaty called the Convention on the Rights of Persons with Disabilities includes the absolute prohibition of forced commitment and forced treatment, and the brilliant and tireless advocate Tina Minkowitz is leading a campaign to show that there is a wide base of support for these prohibitions. This is especially important in the United States, because 162 nations have ratified the CRPD, but the U.S. has not.

Minkowitz worked on drafting and negotiations for the treaty from 2002-2006 and helped ensure the incorporation in the CRPD of Article 12, which says that “states,” countries and national governments bound by international law recognize that people with disabilities have the right to make their own decisions in all aspects of life and to do so free from coercion. Note that “people with disabilities” applies to anyone who has received a diagnosis of any mental disorder (in addition to other disabilities). It is important to note the CRPD’s Article14, which specifies according to the text and the authoritative interpretation by the Committee on the Rights of Persons with Disabilities that the existence of disability or perceived disability cannot be used to justify deprivation of liberty, and Article 25 requires that healthcare be provided on the basis of free and informed consent. The word “perceived” is crucial, in light of the fact that the ballooning numbers of categories listed as mental disorders in the two primary handbooks used to classify people as mentally ill have made it possible, even likely, that anyone entering a therapist’s or other professional’s office in other than a calm and happy state will be diagnosed as psychiatrically disordered, moving just about anyone into the “perceived as disabled” category. So one crucial myth that is relevant to the CRPD is that psychiatric diagnoses are scientific and usually appropriately applied.

If no harm came from being classified as mentally ill, there would be less cause for alarm. But it is easy, even likely, for laypeople, therapists and other healthcare professionals, and judges to assume wrongly that having a disability (even a perceived disability) means that one’s judgment is impaired and that one should not be allowed to make choices about their lives, their bodies, and the treatments to which they will be subjected. Frequently, the criterion of “dangerous to oneself and/or others” is used to justify forced commitment or forced treatment, and this is done despite the proven fact that people diagnosed as mentally ill are actually less likely than others to commit acts of violence and more likely to be victims of violence. The evidence for this pattern is all the more remarkable, given that for a number of reasons (e.g., defense attorneys trying to get psychiatric labels for their clients in order to obtain reduced sentences or diversion from prison to the mental health system; the skyhigh frequency of prisoners being diagnosed as mentally ill so that they can be heavily medicated and thus reduce the need for prison staff), statistics in the near future are likely to show an increasingly high correlation between psychiatric labels and violence. Thus, two other crucial myths that are relevant to the CRPD are that people who have received psychiatric labels are likely to be incompetent to make choices about their lives and that they are more likely than other people to be violent.

A fourth crucial myth is that forced commitment and forced treatment are beneficial (and, by implication, not harmful). That this is a myth is reflected in the high rates of suicide that follow inpatient treatment and the increased rates of suicide caused by many psychiatric drugs, as well as the plummeting rates of recovery and increased rates of longterm disability that have followed the introduction of various psychiatric drugs into the market and the use of electroshock.

Another myth is this: The important word “orthogonal” applies to the question of whether people diagnosed as mentally ill are able to make their own choices and whether they have good judgment. We all know people who have no psychiatric labels but who make terrible choices and poor judgment, yet those limitations are not used to deprive the of their human rights. These capacities are orthogonal to whether or not one has been diagnosed as mentally ill, meaning that knowing whether or not a person has a diagnosis is simply not a predictor of their judgment and ability to make good choices for themselves. A related myth is that if someone is diagnosed as mentally ill, all of their decision making power must be wrenched away from them, when — as with many people who are not so diagnosed — sometimes what the person needs is a little support of various kinds, including assistance with filling out forms or practical help with cooking or shopping or getting a service animal during times when they are struggling.

The CRPD standard is for people who have or are perceived to have disabilities must be provided the opportunity to give free and informed consent. That is very far from what happens with the vast majority of people treated by psychotherapists, not to mention those who are deprived of their human rights. Consider this: Psychiatric diagnosis is the bedrock, the first cause of everything bad that happens to people in and through the mental health system. If they do not diagnose you, they cannot treat (or “treat”) you, whether or not the treatments are helpful to you. But almost no one who enters a therapist’s office is ever fully informed and thus almost no one is put in a position where they even might give informed consent. Why? There are three reasons:

  1. They are almost never told, “In order for your insurance to pay my bills, I will have to give you a psychiatric diagnosis, but you have the right to know that psychiatric diagnoses are unscientific, that getting one does not help alleviate suffering, and that getting one carries a wide array of risks of harm, from plummeting self-confidence to loss of employment and of child custody and of security clearance…even to death from treatments that are justified on the basis of your label.”
  2. They are almost never told, “I am recommending Treatment X, but I am going to tell you everything about the potential benefits and potential kinds of harm that can result.” The reason they are almost never told this is that these days, the vast majority of treatments are with psychiatric drugs, and lawsuits have repeatedly revealed that the drug companies purposefully conceal much of the harm, so there is no way for conscientious therapists to get that information and thus no way for them to convey it to their patients. Something similar happens with electroshock and with expensive but intensively marketed programs called things like “neurobiofeedback” that have not been shown to be helpful but that are often very costly.
  3. They are almost never told, “I am recommending Treatment X, but I am also going to describe for you the huge array of approaches that have been helpful to people who are going through what you are going through … and that often carry little or no risks of harm.”

Alarmed about the lack of disclosure, which puts suffering people who seek help in the mental health system at huge risk of harm with no way even to know what questions to ask and what recommendations to challenge, I organized the filing of nine complaints to the Ethics Department of the American Psychiatric Association, because that APA publishes and hugely profits from the Diagnostic and Statistical Manual of Mental Disorders (DSM), whose categories had been used against the complaints with tragic effects. We said that if the APA had honestly disclosed the unscientific nature of its categories and the risks of harm, as well as that getting a label would be helpful largely or only in order to get insurance coverage for treatment, the complainants would not have blindly accepted their labels and the treatments that were justified to them on the basis of the labels (“You have Disorder Y, so you should accept Treatment Z, because that is what is used for people with Y”). The APA dismissed the complaints on spurious grounds and with not one iota of attention to their merits.

Five of those complainants then filed complaints with the U.S. Department of Health and Human Services’s Office of Civil Rights (OCR). The complaints were filed pursuant to the Americans with Disabilities Act, according to which people can be discriminated against by being treated as though they are disabled (mentally ill in these cases) when in fact they are not. All of the complainants had been experiencing upsetting life situations but should by no means have been diagnosed as mentally ill. Yet according to the (falsely-marketed as scientific) DSM, they were mentally ill, and the treatments that were justified on the basis of their labels had had devastating consequences for them. The OCR dismissed the complaints on spurious grounds and with no attention to their merits.

The outcomes of these complaints provide a solid paper trail revealing that in the United States, the enterprise of psychiatric diagnosis is entirely unregulated. This makes it even less regulated than the major financial institutions whose unregulated actions seriously damaged the economy. The paper trail shows that both the lobby group called the APA, which earned more than $100 million from the last edition of the DSM and spent not one cent to reveal the truth about its manual or to warn of the harms they knew about, and the government entity (OCR of HHS) that by all rights ought to provide oversight and regulation, have chosen to do nothing. This makes it all the more compelling for all of us to press for the United States government to ratify the CRPD. The loss of human rights of just one of us through fraudulent advertising, cover-ups, and perpetuation of dangerous myths is the loss of human rights of us all.

As a U.S. citizen, I am embarrassed and appalled that as this country discusses whether or not to ratify the CRPD, it wants to add what are called “RUDs,” reservations, understandings, and declarations created by the current federal administration and the Senate Foreign Relations Committee. According to Minkowitz, these include the claim that U.S law already fulfills or exceeds the obligations our country would have under the CRPD treaty. The above described complaints that we filed — and the rejection of those complaints by the U.S. Department of Health and Human Services’s Office of Civil Rights gives the lie to that claim, since there is simply no governmental regulation of psychiatric diagnosis, and diagnosis is the sine qua non of forced commitment and forced treatment.

* * * * *

Originally posted on paulajcaplan.net

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.

Paula J. Caplan, PhDPaula J. Caplan, PhD, is a clinical and research psychologist, activist, Associate at the DuBois Institute, Harvard University, and the author of 11 books, including one that won three national awards for nonfiction and two about psychiatric diagnosis. Her books include They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal and the edited Bias in Psychiatric Diagnosis.

Una campaña en contra de los internamientos involuntarios y las intervenciones psiquiátricas forzadas, por Ana María Sánchez

http://congresovisible.org/agora/post/una-campana-en-contra-de-los-internamientos-involuntarios-y-las-intervenciones-psiquiatricas-forzadas-por-ana-maria-sanchez/8152/

Escribo en apoyo a la campaña contra la prohibición absoluta de los internamientos involuntarios y las intervenciones psiquiátricas forzadas. Me piden argumentar con base a la Convención de los Derechos de las personas con Discapacidad y lo haré, aunque el argumento que expongo es el de la salvaguarda de la dignidad de todas las personas con respeto absoluto a sus derechos.

Me motiva escribir esta invitación a sumarnos en la insistente y motivada convocatoria que hace CHRUSP, Center for the Human Rights of Users and Survivors of Psychiatry, pero también ante la posibilidad de generar los cambios profundos que den un vuelco a paradigmas que estigmatizan y discriminan. Me sumo contra los internamientos involuntarios y las intervenciones psiquiátricas forzadas porque:

1. Reducen a la persona a un objeto al quien se le busca controlar, aniquilan la voluntad y la creatividad, acabando con su libertad.

2. Atemorizan, estigmatizan y desinforman sobre la discapacidad psicosocial.

3. No resuelven la parte estructural de una sociedad que actúa desde el paradigma de la “normalidad” encerrando a todos los que no se adaptan a los convencionalismos sociales.

4. Es una respuesta política cómoda e insuficiente que no responde a las necesidades específicas de las personas con discapacidad psicosocial y de sus familias.

5. Descarta y abandona a las personas con discapacidad psicosocial, las confina a vivir en aislamiento, privadas de su libertad y sometidas a tratos crueles e inhumanos.

6. Promueve el olvido social y la negligencia política ante los abusos y violaciones de los derechos de las personas con discapacidad psicosocial.

 

Me sumo hoy a esta causa, convencida desde mi propia lucha a favor del reconocimiento de los derechos de las personas con discapacidad. Desde las experiencias de personas que se han visto coartadas y obligadas a vivir aletargadas, forzadas a un tratamiento y confinamiento, separadas de una sociedad que busca normalizar, homogeneizar y catalogar a quienes somos diferentes. A partir de los testimonios de personas con discapacidad psicosocial y sus familiares que sufren rechazo y discriminación, padecen la falta de servicios adecuados y el abandono en reclusión o en calle, entre otros. No nos olvidemos por ejemplo, de la violencia contra mujeres con discapacidad psicosocial, sus derechos son negados y olvidados y por lo general no se retoma la lucha desde los movimientos a favor de los derechos de las mujeres.

La Convención de los derechos de las personas con discapacidad y otros instrumentos internacionales nos hacen la invitación a pensar y actuar para que los derechos de todos y todas se promuevan y respeten. No es suficiente estar en contra de los internamientos y tratamientos forzados, se requiere pensar creativamente para hacer del modelo de derechos humanos una realidad y exigir al estado las políticas públicas que promuevan y garanticen la realización de los derechos de las personas con discapacidad psicosocial.

Para más información sobre esta campaña: https://absoluteprohibition.wordpress.com/page/2/

 

 

¿Qué ganamos con abolir la psiquiatría forzosa? -Andrea Cortés

http://congresovisible.org/agora/post/que-ganamos-con-abolir-la-psiquiatria-forzosa/8154/

Estamos impulsando cambios muy importantes que se sitúan al margen del conjunto de reivindicaciones sociales que son respaldadas por las mayorías. Me refiero al reconocimiento de los derechos de las personas con discapacidad psicosocial o discapacidad cognitiva.

Se cree erróneamente que la atención que recibimos constituye asunto resuelto y por consiguiente, la gente confía en las bondades de la psiquiatría, la farmacología, las terapias de cualquier índole y sobre todo, de la posibilidad de aislar y mantener en esa situación a quienes  no se acoplan a lo comúnmente aceptado. La sociedad crea los problemas, luego los oculta y finge no tener nada que ver en esto, de esta forma los hospitales psiquiátricos son reductos en los que se encierra a seres “molestos” y/o etiquetados como “violentos y peligrosos”, bajo la dudosa promesa de un restablecimiento de sus facultades, o de una rehabilitación. La psiquiatría biologista ha contribuído a justificar estas acciones al atribuir como causas inequívocas de los trastornos mentales a daños cerebrales, descartando de plano toda la vida y el contexto familiar y social de las persona afectadas.

En realidad, el deshacerse de las personas con discapacidad psicosocial o cognitiva mediante el encierro, ya sea temporal o permanente en una institución psiquiátrica, es una práctica común y de buen recibo entre la población colombiana. Aprovechando en algunos casos la existencia de una interdicción para disponer de la vida de alguien, sin necesidad de matarla en forma física, pero sí, matándola en vida a fin de acceder a beneficios económicos. También existen abundantes casos en los que la libertad se suprime como castigo por tener una característica personal como orientación sexual o de género diversa, o también como única respuesta ante la carencia absoluta de estrategias de apoyo desde la familia y la comunidad para manejar los ‘trastornos mentales’ y procurar un nivel de vida apropiado a quienes viven con ellos.

La aceptación social de la institucionalización forzada hacia personas con discapacidad psicosocial o cognitiva, real o percibida, demuestra la ignorancia y el desinterés de la población por entender la naturaleza de los trastornos mentales debido al miedo y a los tabúes que alientan la estigmatización. En lugar de informarse y capacitarse para convivir, no solamente cuidar, a las personas con discapacidad psicosocial, éstas y las personas del entorno prefieren asumir que los “expertos” en el tema ya tienen todas las respuestas y que las soluciones sólo provienen de ellos, de la psiquiatría organizada. Muy pocos se atreven a dudar y los que los hacen jamás son escuchados. Como resultado las personas con discapacidad quedamos expuestas a ser maltratadas dentro de las instituciones con métodos denominados como terapéuticos pero que en realidad son tortura, puesto que no curan ni ayudan a mejorar la condición mental, claramente se trata de castigos para aplacar a los anormales e inadaptados. La indiferencia de la sociedad ante estos hechos los hace parecer legítimos.

Las personas con discapacidad en Colombia no conocemos cuáles son las posibilidades de impugnar o demandar una hospitalización forzada, desconocemos cómo reclamar una reparación por haber recibido torturas y tratamientos contra la propia voluntad, no contamos con la más mínima posibilidad de rechazar un tratamiento y acogernos a otro, así como tampoco de abandonar una institución voluntariamente.

Los psiquiatras y su personal de apoyo dentro de las clínicas cuentan con todas las ventajas, empezando por la credibilidad de las agobiadas familias. Controlan la información que les brindan sobre las enfermedades, los tratamientos y justifican todas sus acciones hacia los internos. Desatienden la obligación de ofrecernos a cuidadores y personas con discapacidad toda la información necesaria para que exista un verdadero consentimiento informado, contando con la opinión de quienes vamos a recibir los tratamientos.  Las clínicas psiquiátricas son cárceles.

La abolición de la institucionalización forzada implicaría impulsar todos los cambios necesarios para brindar una atención eficaz y respetuosa hacia las personas con discapacidad psicosocial y cognitiva y le haría un aporte inmenso a la sociedad en términos de aprendizaje sobre respeto, inclusión y convivencia. También es evidente que puede contrariar a quienes vean amenazados sus intereses y privilegios. Pero somos más los afectados por el abuso de poder de los psiquiatras, de los laboratorios farmacológicos y de las instituciones que obtienen dinero a partir de nuestros padecimientos contribuyendo a empeorarlos. Nuestro bienestar físico y mental debe prevalecer ante los intereses institucionales, industriales y de personas particulares.

 

Andrea Cortés

Persona con discapacidad psicosocial

Activista independiente

 

Este texto fue escrito en el marco de la Campaña de Apoyo a la Prohibición Absoluta de la CDPD de los Tratamientos Forzosos y los Internamientos Involuntarios. Para obtener más información consulte el siguiente link: https://absoluteprohibition.wordpress.com/page/2/

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.

Sarah Knutson: Rethinking Public Safety – The Case for 100% Voluntary

(originally appeared on Mad in America website)

(now available in Italian translation on il cappellaio matto website)

Not long after posting this Principle from the 10th Annual Conference on Human Rights and Psychiatric Oppression, the following comments appeared on my Facebook page:

“It would have to be replaced with something else, we need to have strong supports we need to take care of each other.”

“Hey you radicals mental illness is a physical illness that requires the attention of a specially trained medical doctor if don’t like the treatment leave for a dessert[sic] island where you can suffer without disturbing others”

CRPDThese are understandably difficult issues.  Historically, there has been a lot of difference of opinion and genuine debate. In 2006, the United Nations weighed in.  They approved the Convention on the Rights of Persons with Disabilities (CRPD).  The CRPD prohibits involuntary detention and forced interventions based on psychosocial disability.  These are considered acts of discrimination that violate the right to equal protection under the law.  Under the CRPD, people with psychosocial disabilities have the same rights to liberty, autonomy, dignity, informed consent, self-determination and security of the individual and property as everyone else.

Shortly thereafter, forced ‘treatment’ was also held to violate the Convention Against Torture:

States should impose an absolute ban on all forced and non-consensual medical interventions against persons with disabilities, including the non-consensual administration of psychosurgery, electroshock and mind-altering drugs, for both long- and short- term application. The obligation to end forced psychiatric interventions based on grounds of disability is of immediate application and scarce financial resources cannot justify postponement of its implementation.

Forced treatment and commitment should be replaced by services in the community that meet needs expressed by persons with disabilities and respect the autonomy, choices, dignity and privacy of the person concerned. States must revise the legal provisions that allow detention on mental health grounds or in mental health facilities and any coercive interventions or treatments in the mental health setting without the free and informed consent of the person concerned.

Many of us hoped that would be the end of it: No forced treatment, clear and simple.  Nevertheless, the debate goes on.  It seemingly has sped up – rather than let up – over the past several years.  Clearly, many of us are sincerely struggling with these issues.  There are people of conscience on all sides.

 

The Case for 100% Voluntary

For the past ten years, the international community has been progressively moving away from involuntary interventions. This essay is the first in a multi-part series.  It highlights important reasons why the rest of us should follow suit. They are as follows:

1.     These issues are universal, not medical

Life, by nature, is difficult and risky.  Our primary certainties are death, loss, and vulnerability. Pain, suffering, sickness and need are pretty much a given.

The idea is to minimize risk as much as possible, but still keep the essential spontaneity of feeling alive.  This a highly personal undertaking. One is never certain what this means for someone else.

That being said, communities can and should offer support to all who want it. At certain times, any of us might want help to balance: (1) factors that concern others, (2) feasible (medical, natural and community) alternatives; (3) risks and benefits; and (4) personal values and lifestyle considerations. The onus, however, is on would-be supporters to earn and maintain our trust. This is the approach adopted by the United Nations in the CRPD. (Art. 12).

2.     Clinicians are lousy predictors

It’s hard to know in advance who is a ‘danger.’  Clinicians are notoriously poor in predicting suicide or violence.  In individual cases, they barely do better than the toss of a coin.

Equally disturbing, the people they will lock up have not been accused of a crime, much less convicted.  Yet, on flimsy odds, innocent people lose jobs, businesses, careers, homes, custody of kids, and much more.

And that’s not the half of it.  Typically, to lose freedom in society, twelve jurors who have been carefully screened for bias must unanimously agree that someone is guilty beyond a reasonable doubt. In the mental health system, a single clinician with little to lose and a lot to gain makes the call.  By far the safest course is erring on the side of lock up. Guessing wrong means serious harm, distraught families, internal reviews, bad press, lawsuits, potential job or income loss.  Sleepless nights and calls at home should not be overlooked.

3.     Drugs, at best, are problematic

Contrary to popular belief, the choice to refuse drugs is rational.  Even if you meet diagnostic criteria, there are many good reasons to ‘just say no.’ This not just for individuals and families, but for insurers and governments as well.

During the past several decades of increasing drug use, disability rates have sky-rocketed.  Long-term outcomes and relapse rates have worsened overall. Particularly disturbing is the fact that third world countries (where people are too poor to afford the drugs) get dramatically better results.

Even as a first-line of defense in emergency settings, there are serious concerns.  In simple fact, drugs are not harm neutral.  Known effects include death, psychosis, rage, despair, agitation, shaking, vomiting, impulsivity, tics, uncontrollable movements, memory loss, skin crawling, insatiable hunger, rapid weight gain, dulled awareness, impotence, insomnia, hypersomnia, fatigue, mood swings, and the list goes on. Many of us have experienced the drugs creating urges to violence or suicide we never had before.  Some of us have acted this out.

The long-term considerations are equally alarming.  Susceptibility to relapse, loss of brain matter, obesity, diabetes, congestive heart failure, and permanent disability increase as a function of exposure.  Due at least in part to drug effects, the ‘mentally ill’ lose 15-25 years (on average!) of our natural lifespan.

For many people, the health risks of drugs aren’t even the half of it. A lot of what you like depends upon your values. Preferences and comfort differ for, e.g.: relying on drugs vs. learning self-mastery, following rules vs. asking questions, respect for experts vs. internal wisdom, managing feelings vs. experiencing feelings, medical vs. natural approaches, and seeing the source of healing as science vs. human or spiritual connection.

When it comes to drugs, one nutter’s meds are anutter’s poison.

4.     Promising alternatives are not being considered

Many do better with non-medical approaches (or might if these were offered).  Fortunately, the options are legion. (See end notes.) Unfortunately, the alternatives are not well-known by clinicians, politicians or the general public.  They therefore not widely offered or available, and are not considered to be worthy of clinical trials.

This is not ‘the other guy’s problem.’  Vast numbers of us are potentially affected.  One in four crosses paths with the mental health system. (3) One in three currently takes a psychoactive drug. (4) And that hardly scratches the tip of the iceberg of all who are struggling.

What separates ‘the worried well’ from the ‘social menace’?  I’d like to think it was more than my natural affinity for the only approach the doctor on call was taught to offer.

5.     Natural diversity is not a pathology

Human experience cuts deep and scatters wide.  Statistically speaking, there are many shared traits, values, and approaches to life. But outliers are a fact as well.

Our variability is to be expected.  Diversity, not conformity, is the real ‘normal.’ It contributes to the robustness, resourcefulness, and creativity of our species.  While it may not get you dates or jobs in a self-promoting, efficiency-driven, corporate-run economy, it is not a disorder.

To the contrary, it is far more like a subculture than an ‘illness.’ In actuality, scores of us value our internal experience, being true to ourselves and treating others generously.  If we speak truth to power and get fired, this is not just impulsivity, mania or disorder.  It’s having the courage of our convictions. We want a world that’s more than just self-promotion, might is right, and going along to get along.  It’s a beautiful vision.  Many of us are dying (including by suicide) for the want of it.  Far from being a social menace, in the 1960’s, Dr. King argued that such ‘creative maladjustment’ is essential in our quest for a socially just, equitable world.

6.     This is about trauma, not disordered brains

Trauma’ is pervasive and potentially causal. Ninety (90!) percent of the public mental health system are ‘trauma’ survivors.  In effect, vast numbers of vulnerable citizens are growing up without a way to meet fundamental human needs. Things like:

  • reliable access to food and habitable shelter
  • safety of person and property
  • dignity, respect and fair treatment
  • meaningful participation and voice
  • the means to make a living and obtain basic life necessities
  • relational, educational, vocational and cultural opportunities for development
  • support to share and make sense of experience in our way

If the aim is to create a safer world, trauma is a much more pressing problem to fix than ‘chemical imbalances’.  There are numerous reasons for this.  We have not even begun to scratch the surface of the implications of a truly trauma-informed system of care.  As the next essay in this series will address.

7.     Do the math – it adds up to ‘voluntary.’

The primary mechanisms for a safer world are already in place.  We already have a criminal justice system with the capacity for detention, probation, in-home monitoring, geographic restriction, behavioral health treatment, drug testing, ‘no contact’ orders, restorative justice, etc.  We already have civil restraining orders, lawsuits, and mediation.  The essential task is to update these protections – and make them meaningfully available – to address modern needs.

The money we save by making things voluntary (police, hospitals, courts, lawyers, lawsuits, staff/ patient injuries, security, insurance, staffing needs, drugs) will go a long way to making this possible.  We could fund numerous thoughtful, responsive, social justice informed alternatives.

We could invest in a truly trauma-informed criminal justice system, rather than dumping that burden on hospitals and their employees. The change in morale itself is worth the price of admission.  Imagine no locked doors and everyone wants to be there. Violence happens, you call the police. Just like everywhere else.

8.     The continued prejudice against people with psychosocial disabilities is not worthy of a free society.

There’s a saying in twelve-step rooms: Every time you point a finger, there’s three pointing back at you.  Suffice it to say, majority fears and prejudice must stop ruling the day. That is discrimination – and it begets discrimination.

In actuality, people from all walks of life have presented a grave risk of injury to self or others at one time or another in their lives: Wall Street brokers, weapons manufacturers, new parents, drinkers, children, teens, Frat houses, Nyquil users, pot smokers, crack addicts, bungee jumpers, martial artists, car racers, dirt bikers, inline skaters, snake handlers, fire builders, gymnasts, boxers, weight lifters, ragers, ex-cons, insomniacs, equestrians, skiers, diabetics who eat sugar, cardiac patients who drive…  There is no end to the list. Some people (trapeze artists, law enforcement, fire departments, magicians, military, security guards, skydivers, operators of heavy machinery) even make a living from this.

There is no principled way of distinguishing the predisposition to such risks from any other kind of psychosocial diversity.  If you needed any better proof of this, the diagnostic criteria for so-called ‘mental disorders’ are so useless that CMS threw them out in 2013 and told the APA to start over.

In any place but a psychiatric exam room, those seen as a cause for alarm would have the following rights: due process, equal protection, liberty, privacy, security of person and property, free speech, freedom of association, freedom to travel, right to contract, written charges, trial by jury, Miranda, and compensation for unjust takings.  You need these protections more, not less when you’ve committed no crime and are simply having the worst day of your life.

In a society worthy of calling itself ‘free,’ public safety would mean all of us. It would go without saying that service recipients are ‘the public’ just as much as anyone else. We would look at fear and prejudice as the real social menace.  People who use mental health services would not need protection from people like you

So please.  Stop locking us up ‘for our own good’ and calling it a favor.  This only distracts from the real question:  If the crisis services are so great, then why isn’t everyone using them? 

Here’s a litmus test. Think about your last life crisis. Did you use these services? Did they feel like a useful, viable option for you?

Before you say, “No but I’m not [crazy, poor, uninsured…],” stop yourself. Try this instead, “No, but I’m not human.

It has a different ring to it, doesn’t it?

 

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.

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Sarah Knutson is an ex-lawyer, ex-therapist, survivor-activist.  She is an organizer at the Wellness & Recovery Human Rights Campaign. You can reach her at the Virtual Drop-In Respite, an all-volunteer, peer-run online community that aspires to feel like human family and advance human rights.