published in The Stanza Project (Otter Press 2013)
published in The Stanza Project (Otter Press 2013)
Where Would I Be If I Didn’t Believe in Me
My name is Corrine A. Taylor, I just titled this piece, “Where would I be if I didn’t believe in me?” Every time I sit down to share an aspect of my story I do it from a place of my heart space wanting to share awareness in the world, knowing there was a period of my life where I knew nothing and only accepted what the psychiatrist and social workers told me. I was desperate to live a well life but didn’t know how. I have learned that I am not the only one and there are many more people just not knowing and accepting to be labeled and drugged. However, I have come to a place of awareness to know that this is just my story and everyone else’s story needs to be respected and validated as I choose to tell my own, knowing that each and everyone of us is worthy to live a well life. I am focusing on the aspect of my life of not being forced to take drugs and why I chose this title, “Where would I be if I didn’t believe in me?” for the Campaign to Support CRPD Absolute Prohibition of Commitment and Forced Treatment.
When I got to a place of awareness of what is happening with psychiatry and choosing to accept a mental illness diagnosis and label for so long, accepting drugs, dying slowly waiting for the cure to be better, to live the life I wanted, I decided, no more. I had been on a journey for peace in my mind body spirit since I was a child, but was interrupted by abandonment, physical, sexual and emotional abuse, along with poverty and poor education. When I said no more to the last psychiatrist I was seeing and she offered me more drugs, I had been involved with the recovery community and learned a lot of the history about mental health in our world. So I was informed and I had a choice. I choice to feel what I needed to feel, let go what I needed to let go, forgive others and myself, and to learn, relearn and learn each and every day. That meant I could no longer accept the mind numbing drugs that never allowed me to fully accept and let go the affects of trauma.
When I had that last session with the psychiatrist and she offered me more drugs, different drugs, I had to tell her no each time. I could still remember the look on her face. I could still remember the confidence in my being that I knew what I needed and what I was asking for and what I expected to get as my human rights. I could still remember the last session with the therapist I saw, giving me suggestions that I should still see her or come back to her soon, that I would need to come and dump on her all the things happening in my life instead of dealing with them. Talking to her and dumping them on her that meant, not facing the situations that I was dealing with outside of her office. That meant not connecting and disconnecting, not building relationships, and more than that, not trusting myself.
But I believed in myself that day. I believed in the journey that I have been living. I saw all the hard lessons things that I past through, learn and like sharing with others, the way that I learn from others. I had people who became friends who supported me and believed in me and helped to ease the burden of an oppressive existence of poverty and lacking. Gave me strength within the Bible stories I learned as a child of not giving up and persevering. I choose to share my story at www.theproject321.com it is the lessons I learned taking the time to take care of myself and learning the lessons from all of my experiences, especially the hard ones.
I am glad I believed in me. Working behind the scenes at a mental health clinic really helped, as I saw the psychiatrist and social workers have all there faults, insecurities, judgments, behavior issues, or really just being as human as I am. It made me strong to believe in myself. When they came at me with negative reports, I was able to stand up for myself. I saw them with all their human flaws, but deserving dignity and respect and I knew that I deserve the same and so does everyone else. If that last psychiatrist with the look on her face that she new what was best for me, had decided to call the cops and lock me up, forced the drugs on me that she was offering me, where would I be today. I have been working to live for the last five years, connecting with my children and supporting them emotionally. Made friends and allies in the community, and living my life included in society, not on the couch drugged, overdosed, dying slowly accepting a diagnosis, and label. I ask again, “Where would I be if I didn’t believe in me?” I know where I ended up when I didn’t believe in me, accepting one mental illness diagnosis one after the other, one drug after the other, and not living up to my full potential as a human being. That is all that I want. Feel I deserve and so does each and everyone of us.
Psychiatric human rights violations are often denied and trivialized, even distortedly re-defined as “human rights” and “right to necessary health help”. The UN convention for the rights of persons with disabilities, CRPD, is changing that. CRPD demands an absolute prohibition of forced psychiatric treatment and involuntary commitment. These are important requirements in giving people with psychosocial disabilities equal human rights. In this text, I will look at different aspects of the CRPD related to that demand. I will illustrate with some references to Norway, the country where I live, showing ways in which the Norwegian Mental Health Act does not comply with the convention. I will also share some further reflections. Towards the end I have written a short version of my own experiences from forced psychiatry. Mental health laws may vary between countries, but some elements are prevalent: the laws are typically directed specifically towards people with psychosocial disabilities and involve forced treatment and involuntary commitment . This text is written for the Campaign to Support CRPD Absolute Prohibition of Forced Treatment and Involuntary Commitment (17). Procrastinations must stop – CRPD-based law reforms must begin!
Norway and the CRPD
Norway ratified the CRPD June 3rd 2013, but came up with some interpretative declarations of article 12, 14 and 25 that undermine central parts of the convention (1). Norway uses these declarations to try to defend the Mental Health Act and forced psychiatric treatment. In February 2015, the president of the Norwegian Psychological Association, Tor Levin Hofgaard, wrote an article asking for a clarification from the government whether health personnel violate the human rights when they follow the coercion regulations in the Mental Health Act (2). He referred to a report sent to the authorities in December 2013 by the then Equality and Anti-Discrimination Ombud – LDO, Sunniva Ørstavik (3). The report said that the Mental Health Act is discriminatory and does not comply with the CRPD. LDO also urged Norway to quickly withdraw its interpretative declarations. In public, the LDO report was met with a noisy silence by the authorities. So, as time had went on, Hofgaard asked for the mentioned clarification. Anne Grethe Erlandsen, State Secretary in the Ministry of Health and Care Services, answered on behalf of the Norwegian authorities: “Vi bryter ikke menneskerettighetene” / – We are not violating the human rights (4). That answer is absolutely not right.
Norway uses much coercion in psychiatry. In spite of reduction strategies, the use of coercion stays at stably high levels (3: p.6-8; 5: p.20-23). Also, reduction strategies instead of CRPD-based abolishment strategies do not go to the core of the issue. Norway is used to see itself as a human rights protective nation and often does not hesitate to criticize other countries for their human rights violations. So it is maybe hard for the authorities to take in that the state of Norway is actually accepting torture and other severe human rights abuses in its own mental health system, via the Mental Health Act. Point 42 of the CRPD General Comments No 1 says as follows:
“As has been stated by the Committee in several concluding observations, forced treatment by psychiatric and other health and medical professionals is a violation of the right to equal recognition before the law and an infringement of the rights to personal integrity (art. 17); freedom from torture (art. 15); and freedom from violence, exploitation and abuse (art. 16). This practice denies the legal capacity of a person to choose medical treatment and is therefore a violation of article 12 of the Convention. States parties must, instead, respect the legal capacity of persons with disabilities to make decisions at all times, including in crisis situations; must ensure that accurate and accessible information is provided about service options and that non-medical approaches are made available; and must provide access to independent support. States parties have an obligation to provide access to support for decisions regarding psychiatric and other medical treatment. Forced treatment is a particular problem for persons with psychosocial, intellectual and other cognitive disabilities. States parties must abolish policies and legislative provisions that allow or perpetrate forced treatment, as it is an ongoing violation found in mental health laws across the globe, despite empirical evidence indicating its lack of effectiveness and the views of people using mental health systems who have experienced deep pain and trauma as a result of forced treatment. The Committee recommends that States parties ensure that decisions relating to a person’s physical or mental integrity can only be taken with the free and informed consent of the person concerned.“ (6: #42)
Neglected harms and traumas – and the need for reparations
Long-term studies have shown higher recovery rates for people who were not on neuroleptics and on very low doses (14, 15). The list of potential harmful effects from neuroleptic drugs is long, including tardive dyskinesia, brain damage, cognitive decline, neuroleptic-induced supersensitivity psychosis, Parkinsonism, sexual dysfunction, weight gain, diabetes, demotivation, anxiety, aggression, suicide, akathisia [ an extreme form of restlessness which in itself can lead to suicide], neuroleptic malignant syndrome — a potentially lethal complication of treatment etc (14, 18). In a research summary on possible harms from forced psychiatry done by nurse and researcher Reidun Norvoll, she listed the following main categories: 1) violation of autonomy and of psychological and physical integrity. Deprivation of freedom of movement (deprivation of freedom). 2) Physical harm and death. 3) Violence and abuse. 4) Trauma, retraumatisation and posttraumatic stress syndrome. 5) Offences/violations, loss of dignity and experiences of punishment. 6) Psychological agony in the forms of shame, anxiety, feeling unsafe, anger, powerlessness, depression and loss of self esteem. 7) Social problems and loss of social identity. 8) Loss of access to own coping skills and of possibilities to self development. 9) Loss of access to voluntary treatment. 10) Harmed therapeutic relationships, resentment against- and distrust in mental health services. (7: p. 16; 8: #5.3).
It can be hard to process traumas that are not acknowledged and understood as such by society in general. When mental health services represents the abuser and as it is officially seen as the mental health helper, one can be left in a very lonely situation trying to handle psychiatry-induced traumas. I think, as part of the implementation of CRPD, there should be provided access to help and support to those who struggle with traumas and other harms from forced psychiatry. I imagine a reality where it is possible for everyone to ask for help when they feel they need it, knowing that they have the CRPD on their side; that the state can not expose them to torture and other terrible human rights violations for being in mental pain (!).
When the necessary abolishment of discriminatory mental health laws and the prohibition of forced psychiatric treatment and commitment has become reality, I think that representatives from politics and psychiatry should publicly perform statements about- and apologies for -the severe human rights abuses that have been going on for so long towards people with psychosocial disabilities. After all the societal acceptance, silence and denial of these kinds of abuses, I think such an acknowledgement and apology is of significant importance for starting reparation work. Compensations is also a relevant part of this. At the same time, there should be no pressure towards victims of forced psychiatry to forgive and get over. I strongly recommend survivor and lawyer Hege Orefellen’s appeal on the urgent need for effective remedies, redress and guarantees of non-repetition regarding torture and other ill-treatment in psychiatry (9). Her appeal was held during a CRPD side-event about article 15 and its potential to end impunity for torture in psychiatry (10). Also, in Guidelines on article 14 of the CRPD, point 24 (a-f) one can read about “access to justice, reparation and redress to persons with disabilities deprived of their liberty in infringement of article 14 taken alone, and taken in conjunction with article 12 and/or article 15 of the Convention” (11).
Danger- and treatment criteria
The Norwegian Mental Health Act has, in addition to its danger criteria, a criterion called the treatment criterion, which does not require danger to oneself or others. The treatment criterion allows for psychiatric coercion if the person is claimed to have a severe mental disorder, and application of forced psychiatry is seen as necessary to prevent the person from having his/her prospects for recovery or significant improvement seriously reduced; alternatively that it’s seen as very possible that the person’s condition in the very near future will significantly deteriorate without coercion (12: Section 3 – 3. 3 a). A very wishy-washy criterion indeed, which is much in use. In 2014 the treatment criterion alone was used in 72% of the cases among people commited (16: p.37).
Both the treatment criterion and the criteria regarding danger to oneself or others discriminate against people with psychosocial disabilities in that disability, or ‘serious mental disorder’, is a premise for psychiatric coercion to apply. In other words, this discrimination is a violation of CRPD article 14 which says that the existence of a disability shall in no case justify a deprivation of liberty (13). Secondly, as the Mental Health Act allows for forced psychiatric treatment, it violates the right to personal integrity (art. 17); freedom from torture (art. 15); and freedom from violence, exploitation and abuse (art. 16). (6:#42).
Points 13-15 in the Guidelines on article 14 are also relevant in this context:
“VII. Deprivation of liberty on the basis of perceived dangerousness of persons with disabilities, alleged need for care or treatment, or any other reasons.
The laws that apply to people in the rest of society regarding acute situations and in the criminal justice system, must apply to people with disabilities too in non-discriminatory ways. The CRPD’s demand for absolute prohibition of forced treatment and involuntary commitment means that it applies both in criminal justice- and civil contexts. (11: #14, 16, 20-21, also 10-12). For people with psychosocial disabilities who come in contact with the criminal justice system, necessary support must be provided to ensure the right to legal capacity, equal recognition before the law and a fair trial. Forced psychiatric treatment and involuntary commitment can not be applied as sanctions for criminal acts and/or for the prevention of such.
Replacing substituted decision-making with supported decision-making
Substituted decision making must be replaced by supported decision making systems. Giving access to supported decision-making for some but still maintaining substitute decision-making regimes, is not sufficient to comply with article 12 of the CRPD (6: #28). From General Comment No 1:
“A supported decision-making regime comprises various support options which give primacy to a person’s will and preferences and respect human rights norms. It should provide protection for all rights, including those related to autonomy (right to legal capacity, right to equal recognition before the law, right to choose where to live, etc.) and rights related to freedom from abuse and ill-treatment (…).” (6: #29)
Some who agree with the CRPD in that diagnostic criteria for coercion should be abolished, still seem fine with the idea that ‘mental incapacity’ can be used as criteria for psychiatric coercion. This is not in line with the CRPD, which neither accepts disability criteria for the deprivation of freedom nor psychiatric coercion. Here is a relevant point to note, from General Comments No1: “The provision of support to exercise legal capacity should not hinge on mental capacity assessments; new, non-discriminatory indicators of support needs are required in the provision of support to exercise legal capacity.” (6:#29 i)
A summary of my own experiences from forced psychiatry
I was not suicidal when psychiatry put me under the Mental Health Act and decided I should get forced neuroleptic “treatment”. I had never been suicidal. The former mentioned treatment criterion is the criterion that was used on me. Forced psychiatry, with its locking me up, restraining me, drugging me, and keeping me on CTO when discharged from hospital, certainly did not make my life better in any way– everything became indescribably much worse. I experienced forced psychiatry as one long punishment for having mental problems. After having been on neuroleptics for a while, my cognition, my intellectual abilities, were severely affected and reduced – and so was my language: from usually having a rich vocabulary I could just utter short, simple sentences. My body became rigid and lost its fine motor skills so I couldn’t dance anymore. A period I also had akathisia, a terrible restlessness which made me walk endlessly back and forth, back and forth. I’m trained a professional dancer and having my dance abilities medicated away was a big loss in itself. The medication took away my vitality, my sensitivity. My emotions were numbed. My personality faded away. Then a severe depression set in – just a complete state of hopelessness – and for the first time in my life I became suicidal. Again and again I said to the staff, psychologists, doctors: – I can not be on meds. I tried to have them understand that the neuroleptics were destroying me and my life. They communicated to me that they thought I was being fussy. They were a big wall that just would not listen to me. Respectlessly enough, some even told me –yes, told me -that I was doing better. The doctors said I would need to be on meds for the rest of my life. That was a message which just manifested the complete hopeless situation. From entering psychiatry, indeed having mental problems, but being a vital, thoughtful, and expressive person who was dancing several times a week, psychiatry had coercively medicated me away from myself and iatrogenically made me severely depressed and suicidal . In effect a slow form of forced euthanasia . One day, while on CTO, shortly after a new forced injection in the buttocks with those horrible meds, I did a dramatic suicide attempt. I was put back into the hospital. I am very glad that I survived. Because unbelievably, a couple of months later, I was told that someone had made a bureaucratic mistake: the coercion documents had not been renewed in time, so there was nothing they could do to hold me back. Of course they would recommend me to stick to the treatment (Ha!) and not leave the hospital too fast (Ha!). I left the hospital the same day. It took me about half a year to become myself again, to be able to think and speak freely, to get my sensitivity, my emotions back, to dance, to feel human again, to feel life. I have never been in a mental hospital since then. I have never had another dose of neuroleptics. And I have never been suicidal again. More than a decade later, I am still traumatized by my experiences from forced psychiatry.
I am very thankful to the CRPD committee for their important work. The CRPD represents a paradigm shift, and there is clearly a resistance out there to accept the full width and depth of the convention. That human rights and non-discrimination applies equally to people with disabilities should not be seen as a radical message in 2016, but sadly, it still is. Societies with their leaders need to realize that systematic, legalized discrimination and abuse of people with disabilities is based on tradition and habitual ways of thinking –not on human rights. That something has been brutally wrong for a long time does not make it more right. Forced psychiatric treatment and involuntary commitment need to be absolutely prohibited.
Thank you for your attention.
1) MDAC: Legal Opinion on Norway’s Declaration/Reservation to the UN Convention on the Rights of Persons with Disabilities http://mdac.org/sites/mdac.org/files/norway_declaration_-_legal_opinion.pdf
Tor Levin Hofgaard: Bryter vi menneskerettighetene?
In Norwegian: Equality and anti-discrimination ombud (LDO): CRPD report to Norwegian authorities 2013 – summary http://www.ldo.no/globalassets/brosjyrer-handboker-rapporter/rapporter_analyser/crpd–2013/crpd_report_sammendrag_pdf_ok.pdf
Anne Grethe Erlandsen: Vi bryter ikke menneskerettighetene http://www.dagensmedisin.no/artikler/2015/02/27/vi-bryter-ikke-menneskerettighetene/
In Norwegian: LDO’s report to the CRPD committee 2015 – a supplement to Norway’s 1st periodic report http://www.ldo.no/globalassets/03_nyheter-og-fag/publikasjoner/crpd2015rapport.pdf
Link to download of CRPD General Comment No 1: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx
In Norwegian: Equality and anti-discrimination ombud (LDO): CRPD report to Norwegian authorities 2013- full version http://www.ldo.no/globalassets/brosjyrer-handboker-rapporter/rapporter_analyser/crpd–2013/rapportcrpd_psykiskhelsevern_pdf.pdf
NOU 2011: 9. Økt selvbestemmelse og rettssikkerhet — Balansegangen mellom selvbestemmelsesrett og omsorgsansvar i psykisk helsevern. 5. Kunnskapsstatus med hensyn til skadevirkninger av tvang i det psykiske helsevernet. Utredning for Paulsrud-utvalget https://www.regjeringen.no/no/dokumenter/nou-2011-9/id647625/?q=&ch=12
Hege Orefellen: Torture and other ill-treatment in psychiatry – urgent need for effective remedies, redress and guarantees of non-repetition https://absoluteprohibition.wordpress.com/2016/02/06/hege-orefellen-on-reparations/
CRPD 13: WNUSP side event on Article 15: Its Potential to End Impunity for Torture in Psychiatry http://www.treatybodywebcast.org/crpd-13-wnusp-side-event-on-article-15-english-audio/
Link to guidelines on article 14 of the CRPD under “Recent Events and Developments” http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx
Norwegian Mental Health Act translated to English http://app.uio.no/ub/ujur/oversatte-lover/data/lov-19990702-062-eng.pdf
Via Mad in America / ‘Anatomy of an Epidemic’ (Robert Whitaker): List of long-term outcomes literature for antipsychotics http://www.madinamerica.com/mia-manual/antipsychoticsschizophrenia/
Lex Wunderink et al: Recovery in Remitted First-Episode Psychosis at 7 Years of Follow-up of an Early Dose Reduction/Discontinuation or Maintenance Treatment Strategy. Long-term Follow-up of a 2-Year Randomized Clinical Trial http://archpsyc.jamanetwork.com/article.aspx?articleid=1707650
Bruk av tvang i psykisk helsevern for voksne i 2014 (report on the use of coercion in psychiatry in Norway 2014) https://helsedirektoratet.no/Lists/Publikasjoner/Attachments/1161/Rapport%20om%20tvang%20IS-2452.pdf
Campaign to Support CRPD Absolute Prohibition of Forced Treatment and Involuntary Commitment https://absoluteprohibition.wordpress.com/
RxISK Guide: Antipsychotics for Prescribers: What are the risks? http://rxisk.org/antipsychotics-for-prescribers/#How_likely_are_the_listed_side_effects_of_antipsychotics_to_happen
Status of Ratification Interactive Dashboard – Convention on the Rights of Persons with Disabilities http://indicators.ohchr.org/