Fiona Walsh – Convention on the Rights of Persons with Disabilities (CRPD): Civil Liberties, Equality and Upholding Human Rights

The 100th Anniversary of the 1916 Rising (Easter Rebellion) is currently being marked in Dublin City and Ireland. The Rising was launched by a small number of Irish Republicans at Easter time 1916 aiming to terminate British rule in Ireland and establish an independent Irish Republic. One of the principles of the Proclamation guaranteed:

‘religious and civil liberty, equal rights and equal opportunities to all its citizens’

In the context of those presenting in emotional distress today in Ireland in 2016 however there is still no guarantee that civil liberties will be respected and the reality of equal rights/opportunities for those perceived to be suffering from ‘mental disorders’ is not on the horizon just yet.   Diagnoses are based on subjective interpretation of ‘symptoms’ by Irish psychiatrists and other professionals who typically see individuals in terms of perceived deficits, brain disorders and inherited genetic defects. There are some more enlightened professionals who think in terms of ‘support’ and supporting decision making for those in distress as opposed to those who however compassionate and well meaning think in terms of ‘control’ ‘risk’ and substitute decision making. Many survivors of psychiatric abuse dread the paternalistic ‘best interests’ approach which typically has been used to deprive them of their basic human rights and to define what has contributed to their distress and what might support them to come through it.

 

Typically individuals in Ireland present in a voluntary capacity via their General Practitioner (GP), out of hours service or to the Accident & Emergency Unit of their local public hospital or to one of the private facilities. I am not aware of any psychiatric unit that does not use coercive practices of some sort.   Most who present in a voluntary capacity on the first occasion are not made aware on entering the facility they can be detained and forcibly treated, albeit on the 2nd opinion of another psychiatrist, which usually validates the first opinion. If you do not agree to Diagnosis and Treatment, then you may well be subjected to detention and forced drugging, seclusion, restraint, ECT etc. Under international human rights law this is could be regarded as Torture. The first thing that typically goes is the individuals clothes, access to fresh air etc, access to phonecalls/visitors , even your children until it is established that you will essentially play ball. Mothers can as I did receive threats such as ‘you know we have the option to contact child protection services’. True informed consent for any ‘Treatment’ including around serious side effects of medication must be sought yet typically is not and usually information not provided automatically either way so that the individual can make or be supported to make an informed decision. For those that know how the system operates and disagree with the medical model fear permeates and is increasingly stopping individuals in distress from reaching out to get the support they desperately crave in a given crisis. Reports of individuals taking their own life rather than submitting to coercion are sadly not uncommon and increasing in frequency in Ireland. Members of our Traveller Community have an increased incidence of suicide seven times higher than the rest of the population and fear often prevents travellers seeking professional support.

 

Ministers Frances Fitzgerald and Aodhan O Riordain published a ‘Road Map for Ratification of UN Convention on the Rights of Persons with Disabilities’ on 21st October 2015.   Introducing Capacity Legislation features on this road map. Accordingly on 30/12/2015 our President Michael D Higgins signed the Assisted Decision Making (Capacity) Bill 2013. Rather than respecting the principles of CRPD though our Departments of Justice and Health and Government bizarrely based the legislation around ‘Mental Capacity’ providing for a ‘Functional Capacity Test’. Prof Brendan Kelly, a prominent Irish Psychiatrist has had huge influence and uses the CRPD to even defend administering Electroshock against the expressed wishes of an individual (family/loved ones have no rights either in respect of those with involuntary status).  Minister Kathleen Lynch refused to listen to the voice of Civil Society Capacity Coalition, chaired by Eilionoir Flynn, Deputy Director, Centre for Disability Law & Policy NUI Galway and essentially deprived Irish Citizens of the Right to have Legal Capacity respected in law. In addition the legislation denies the right to make a legally binding Advance Healthcare Directive in the context of emotional health, even in respect of ECT. Although the word ‘unwilling’ was recently removed from our Mental Health Act 2001 , the word ‘unable’ still remains, essentially allowing forced detention and drugging to continue unabated. As a survivor of Psychiatry (my experience is relatively mild in many respects) I sat in the Public Gallery of our Houses of Parliament (Dail and Seanad) saddened by the refusal of our Minister and Government to uphold the principles contained in CRPD and respect Human Rights, despite being challenged by brillant Human Rights advocates including Jillian Van Turnhout and Katherine Zappone in our Seanad and Padraig Mac Lochlainn along with other elected representatives in our Dail Chamber. At a recent NGO Forum on Human Rights in Dublin Castle , ‘United Nations Council, ten years on’ (which UN Rapporteur Ms Catalina Devandas Aguilar was invited to speak and attended) Layla de Cogan Chin, Dept of Justice left attendees in no doubt with the Dept line that the Irish Government will essentially pick and choose what rights will be respected and that CRPD will be ratified with reservations/declarations.

 

Increasingly Irish survivors are looking to United Nations and the International Human Rights arena to expose the inability/indifference of the Irish Government and Psychiatry Profession to respectively legislate and usher in reform so that those who seek support can do so free of fear and terror of coercion. For some layer by layer of their human dignity is stripped away and they have to recover from the Diagnosis and ‘Treatment’ in addition to what brought them in contact with services in the first place.   In my own case presenting in a voluntary capacity agreeing to take all prescribed medication, still resulted in an attempt by treating Psychiatrist in 2011 to attempt sectioning on the basis of a second opinion of her choice not mine. My apparent ‘crime’ was that I did not agree with given diagnosis or that medication would be of therapeutic benefit.  A dear friend of mine, fellow human rights defender and member of Recovery Experts by Experience (REE) , at 77 years of age has to live daily with the fear of having ECT forced upon her despite having a power of attorney and Advance Directive made. Why should any Psychiatrist have the power to totally disregard her expressed wishes and disrespect her right to Legal Capacity should she ever become distressed in the future? Why should any human being live with the daily fear of having forced ECT again? As a member of Recovery Experts by Experience (REE) we made a submission to UN ICCPR in 2014. Tallaght Trialogue advocacy also submitted two reports under UN ICESCR in addition to contributing to joint parallel report from Civil Society, coordinated by Noeline Blackwell on behalf of FLAC. As a member of Tallaght Trialogue Advocacy I presented in person in June 2015 to UN ICESCR Committee in Geneva (speaking notes link below).

 

The UN CRPD reflects that each Human being has a right to be treated equally (Article 5) and have their will and preferences respected, that their legal capacity (Article 12) is inherent and above all that their human dignity must be respected. My hope is that the standards in the Convention that prohibit forced detention (Article 14) and treatment will propel Irish elected representatives to seek, resource and fund alternative approaches to coercion such as Open Dialogue, Hearing Voices Approach (see http://hearingvoicesnetworkireland.ie/ ) , Crisis Houses, Peer Support & Advocacy … Survivors of Psychiatry deserve to have their voices heard not silenced as is the case in Ireland where tick a box engagement is typical and ‘Experts speak to Experts’ time and time again without the voice of lived experience.

 

Thank you Tina Minkowitz and fellow advocates at CHRUSP, Eilionoir Flynn & past and present Colleagues, CDLP NUI Galway , Fiona Morrissey Lawyer & Researcher and to all who contributed to the CRPD and advocate to have the standards enshrined upheld. It is time the incoming Irish Government embraced the principles of Civil Liberties and Equality in the 1916 Proclamation and ratified the CRPD (signed 30th March 2007) and Optional Protocol without declarations/reservations. Why not embrace the opportunity without further delay to respect Legal Capacity (Article 12) and the will and preferences of individuals and treat every citizen equally regardless of physical disability, psycho-social disability or a perceived disability? A Democracy that silences the voice of Civil Society is not what the signatories of the 1916 Proclamation aspired to, nor is it appropriate for the survivors of psychiatric abuse past and present in 2016. It is time for Irish Legislators to be challenged by those charged nationally to uphold human rights to step up to the plate and respect and ratify the CRPD and Optional Protocol. Accordingly I unreservedly support the Campaign to Support CRPD Absolute Prohibition of Commitment and Forced Treatment.

 

Signed: Fiona Walsh, Human Rights Defender & Survivor of Irish Psychiatric Abuse

Dated: 28th March 2016

Member:

  1. Recovery Experts by Experience (REE)
  2. Tallaght Trialogue Advocacy (on facebook & twitter @TallaTrialogue)

 

Speaking notes ICESCR Review Ireland June 2015 , Fiona Walsh, Tallaght Trialogue Advocacy (pages 19/20 FLAC newsletter)

http://www.flac.ie/publications/flac-news-25-2-aprjun-2015/

http://hearingvoicesnetworkireland.ie/

 

Irish Examiner Newspaper Article 20/01/2016

http://www.irishexaminer.com/viewpoints/yourview/electroconvulsive-therapy-is-still-given-to-patients-who-dont-want-it-377065.html

 

Dr. Fiona Morrissey, Lawyer & Mental Health Researcher: Article in Irish Examiner dated 21/11/2015 and link to her research regarding Advance Directives

http://www.irishexaminer.com/viewpoints/analysis/assisted-decision-making-bill-why-changes-are-needed-to-current-laws-366167.html

 

Article in Irish Independent 15/11/2015

http://www.independent.ie/irish-news/health/mentally-ill-still-forced-to-endure-shock-treatment-34201655.html

Eilionoir Flynn CDLP NUI Galway – Blog Posts on www.humanrights.ie

http://humanrights.ie/author/eilionoirflynn/

Prof Brendan Kelly, Psychiatrist, letter to editor 22/11/2015

http://www.independent.ie/opinion/letters/dont-deny-them-this-treatment-34223005.html

Roadmap to ratification of CRPD issued by Irish Dept of Justice

http://www.justice.ie/en/JELR/Roadmap%20to%20Ratification%20of%20CRPD.pdf/Files/Roadmap%20to%20Ratification%20of%20CRPD.pdf

Don Weitz: Fight to be Free

Fight To Be Free: Abolish Involuntary Commitment and Forced Psychiatric Treatment – A Submission to Committee on Rights for Persons with Disabilities/CRPD 

by Don Weitz

Over 60 years ago, I was labeled “schizophrenic”, locked up and forcibly drugged 110 times with subcoma insulin shock in Mclean Hospital, a psychoprison (psychiatric hospital) near Boston, affiliated with Harvard Medical School and Massachusetts General Hospital. Because I was going through an existential identity crisis – psuychiatrized as “mental illness” & “schizophrenia” – struggling to find out what I wanted to do or be with my life in college, my family colluded with the psychiatrists to “treat” and involuntarily committed me, locked me up without my consent. For 15 months, I lived on an all-male ward with 15- 20 other patients, some brain-damaged by electroshock and lobotomy, others intimidated and traumatized by “safe and effective” psychiatric drugs, all of us suffered the degradation and humiliation of being incarcerated, having our daily institutional lives totally controlled by shrinks. After I was “discharged” in 1953, I suffered frequent anxiety or panic attacks for the next few years while studying psychology in university and seeing other psychiatrists. At that time, patients had no legal or civil rights, including no right to appeal involuntary committal, I had no right to appeal or refuse insulin shock or any unwanted psychiatric treatment. I know something about what it feels like to be treated like a prisoner, what it’s like to lose your freedom without a hearing or trial – preventive detention which is what involuntary committal really is. I know what it’s like to be tortured in the coercive and inhumane psychiatric system where human rights are sanitized as ”privileges”. Violations of our human rights in the 1950s are still violated today. Human rights in psychiatry are a sham. (1).

Involuntary Committal

Involuntary committal is a legal atrocity that must be abolished. It’s a very common and widespread legal psychiatric procedure enforced by psychiatrists, judges and police in virtually every country where psychiatry is legitimized by oppressive mental health laws and promoted by psychiatrically-biased government officials and the corporate media – the psychiatric police state. Involuntary committal laws authorize the incarceration or imprisonment of people in all psychiatric facilities and mental health centres, not just for days but also for weeks, months or years – particularly under the Ontario government’s “certificates of renewal.” (2,3) To be clear, involuntary committal is loss of freedom without a public hearing or trial and without charge of any civil or criminal offence. Although legal and enforced by many states and provinces, involuntary committal is actually preventive detention which is strictly prohibited under international human rights law; virtually all provincial and state mental health laws violate our human rights and international law, yet there’s little or no awareness, discussion and resistance re this grim fact.

In Ontario, the criteria for depriving a citizen of freedom are so ill-defined, vague and broad they can apply to virtually any person. Involuntary committal qualifies as a blatant violation of human rights or “patients’ rights” which are never mentioned in mental health legislation. Consider this wording of “involuntary admission” and initial 72-hour psychiatric assessment in Ontario’s Mental Health Act:

“Conditions for involuntary admission –

(a) that the patient is suffering from a mental disorder of a nature or quality that likely will result in,

(i) serious bodily harm to the patient,

(ii) serious bodily harm to another person, or

(iii) serious physical impairment of the patient,

or [will result] in substantial mental or physical deterioration

unless the patient remains in the custody of  a psychiatric facility;…” (4)

Under the Act’s definitions, “mental disorder means any disease or disability of the mind.” This definition is a legal fiction, it’s nonsensical, illogical and unscientific; as an abstraction or theoretical construct the mind, as Szasz has pointed out, can not be diseased or disabled, only the body can be diseased. Further, this key definition obviously supports psychiatry’s unscientific and discredited biomedical medical of “mental illness” which is entrenched in all editions of the equally discredited Diagnostic and Statistical Manual of Mental Disorders (DSM), psychiatry’s bible of bogus and stigmatizing diagnostic labels. Further, the phrase “substantial mental or physical or deterioration” is dangerously imprecise and subjective, it allows any physician to lock up and label innocent citizens simply by signing certificates such as “Form 1” which authorizes an initial 72 hour period of observation and assessment”, frequently followed by “Form 2” which authorizes 2 weeks of  involuntary commitment followed by “Form 3 which authorizes an additional 30 days and longer periods under a “certificate of renewal.” Also, the key term “ likely will result” is extremely misleading and problematic since it is common knowledge that psychiatrists can not validly and reliably predict harm, dangerousness or violence.

Forced Treatment

It’s bad enough that psychiatrists have so much power and that so many are incompetent while depriving thousands, if not millions of innocent people of freedom every day; however, they also have the power to forcibly treat or assault us – in the name of “mental health” of course. Although “informed consent” is a key medical-ethical concept and principle in medicine and has been since the historic Nuremberg Code of 1947, it’s frequently violated in psychiatry and the mental health system, another sham. Why7 Because psychiatrists and other physicians routinely ignore or violate its basic criteria. Consider these fundamental requirements of consent and informed consent   to treatmeent clearly and concisely spelled out in Ontario’s Health Care Consent Act:

Elements of Consent

The following are the elements required for consent to treatment:

1.The consent must relate to treatment.

2.The consent must be informed.

3.The consent must be given voluntarily.

  1. The consent must not be given through misrepresentation or fraud.

Informed consent

1.The nature of the treatment.

2.The expected benefits of the treatment.

3.The material risks of the treatment.

4.The material side effects of the treatment.

5.Alternative courses of action.

6.The likely consequences of not having the treatment. (5)

Although some psychiatric survivors may have consented to psychiatric drugs (“medication”) and/or electroshock (“ECT”), virtually none has been fully informed of their major risks and alternatives. For many, such consent has been given involuntarily-by threat, staff pressure, intimidation, physical restraint or force. During the public hearings on electroshock in Toronto in April 2005, not one survivor recalled being informed about the major effects of  “ECT” such as permanent memory loss, brain damage, and trauma; non-medical or community alternatives were never mentioned. Similar consent violations were recalled during survivor testimony on psychiatric drugs (”medication”). In other words, informed consent to psychiatric treatment is a myth, virtually nonexistent, particularly in psychiatric facilities. (6)  Given many studies, common knowledge and personal testimony of violations of informed consent to treatment, we are talking about forced treatment, psychiatric assault. Psychiatrists and other doctors who fail to fully inform patients about any prescribed treatments and risks should be criminally charged with medical negligence and assault. At the same time, all psychiatric patients should be given basic and accurate information, written or in alternate formats they can easily access and understand, on informed consent; they should also be given opportunities to discuss any questions about informed consent, including the right to refuse any treatment, with a patient advocate or lawyer, and translator if requested.

Its time to start criminalizing and launching class-action lawsuits against forced psychiatric treatments and involuntary committal; it’s time to stop sanitizing these serious human rights violations and psychiatric crimes as “treatments.”

Enough talk. How about some real action for a change? It’s our freedom and lives that are at stake!

 

Notes

  1. D. Weitz. “Struggling Against Psychiatry’s Human Rights Violations: An Antipsychiatry Perspective”. Radical Psychology [online] vol.7, 2008, http://www.radicalpsychology.org/vol7-1/weitz2008.html.

For other major critiques of psychiatry, also see, T. Szasz. Psychiatry: The Science of Lies. Syracuse University Press, 2008; P. Breggin, Brain-Disabling Treatments in Psychiatry, NY:Springer Publishing Company, 2008; B. Burstow, Psychiatry and the Business of Madness: An Ethical and Epistemological Accounting, Palgrave Macmillan, 2015.

  1. D.Hiltz and A. Szigeti. A Guide to Consent & Capacity Law in Ontario. LexisNexis Canada Inc., 2006/2007.
  1. H. Savage and C. McKague. Mental Health Law in Canada. Toronto: Butterworths, 1988.
  1. Mental Health Act. R.S.O. 1990 S.20 (5).  In Hiltz & Szigeti, p.295.
  1. Hiltz & Szigeti, p, 182.
  1. Coalition Against Psychiatric Assault. Inquiry Into Psychiatry, 2005. https://coalitionagainstpsychiatricassault.wordpress.com/events/past-events/inquiry-into-psychiatry-2005/

***

Don Weitz is a psychiatric survivor, antipsychiatry and social justice activist.

In the early 1950s, he was forcibly administered 110 insulin shocks while involuntarily committed and incarcerated for 15 months in Mclean Hospital. For over 30 years, he has been active in the antipsychiatry liberation movement. In 1977, he co-founded with Harvey “Alf” Jackson and Bob Carson the Ontario Mental Patients Association that soon changed its name to On Our Own. In 1980 with shock survivor and lawyer Carla McKague, he co-founded Phoenix Rising, the first survivor-controlled antipsychiatry magazine in Canada. A few years later in 1983, he was one of the founding members of the Ontario Committee to Stop Electroshock which was the first organization to organize public hearings on electroshock and lobbied the Toronto Board of Health and Ontario government to abolish “ECT” and has participated in nonviolent civil disobedience in Canada and the United States. In 2003 with Dr. Bonnie Burstow, Don co-founded the Coalition Against Psychiatric Assault (CAPA) which organized public hearings on psychiatric drugs and electroshock in 2005; CAPA has also organized several public rallies and demonstrations against shock including a Toronto protest as part of the International Day of Protest Against Electroshock on May 16, 2015. Since the late 1990s, Don has also been an outspoken critic of homelessness and advocate for affordable housing as a member of the Ontario Coalition Against Poverty. He lives in Toronto.

 

 

 

 

 

 

Peter Gøtzsche – FORCED ADMISSION AND FORCED TREATMENT IN PSYCHIATRY CAUSES MORE HARM THAN GOOD

http://www.deadlymedicines.dk/forced-admission-and-forced-treatment-in-psychiatry-causes-more-harm-than-good/

By Peter C. Gøtzsche, Professor, MD, DrMedSci, MSc

8 March 2016

Forced treatment in psychiatry as we currently know it cannot be defended, neither on ethical, legal or scientific grounds. Ethically, the patients’ values and preferences are not being respected, although the fundamental human right to equal recognition before the law applies to everyone, also to people with mental disorders.1,2 This is clear from the United Nations Convention on the Rights of Persons with Disabilities,2 which virtually all countries have ratified. However, we ignore the convention and continue to discriminate against people with mental problems.

Please consider this. Doctors cannot give patients insulin without their permission, not even if the lack of insulin might kill them, and they cannot give adult Jehova’s witnesses blood transfusions without their permission, even if the lack of blood might kill them. The only drugs that can be given without permission are also some of the most dangerous ones. Psychiatric drugs are the third major killer after heart disease and cancer, with an estimated 539,000 deaths in the United States and European Union combined.1,3 Only soldiers at war and psychiatric patients are forced to run risks against their will that might kill or cripple them. But there is an important, ethically relevant difference: soldiers have chosen to become soldiers; psychiatric patients have not chosen to become psychiatric patients.

In many countries, a person considered insane, or in a similar condition, can be admitted to a psychiatric ward on an involuntary basis if the prospect of cure or substantial and significant improvement of the condition would otherwise be significantly impaired. After having studied the science carefully over many years, I have come to doubt that this is ever the case.1

Forced treatment most commonly involves the use of antipsychotics, but they are very poor drugs. The placebo controlled trials are seriously flawed because they have not been adequately blinded.1 Antipsychotics have many and conspicuous side effects, so most doctors and patients can guess whether an active drug or a placebo is given, which exaggerates the measured effect markedly.1 Furthermore, almost all patients in these trials were already in treatment with an antipsychotic drug before they were randomised after a short wash-out period. This cold turkey design means that abstinence symptoms – which may include psychosis – are being inflicted on patients who get placebo. Even helped by these formidable biases in the trials, the outcome is poor. The minimal improvement on the Clinical Global Impressions Ratings corresponds to about 15 points on the Positive and Negative Syndrome Scale,4 but what was obtained in recent placebo controlled trials in submissions to the FDA for newer antipsychotics was only 6 points,5 although it is easy for scores to improve quite a bit if people are knocked down by a tranquilliser and express their abnormal ideas less frequently. Thus, the FDA has approved newer antipsychotic drugs whose effect is far below what is clinically relevant. Old drugs are similarly ineffective.1

Whereas the benefits of antipsychotics are doubtful, the harms are certain, and the cold turkey design is lethal. One in every 145 patients who entered the trials for risperidone, olanzapine, quetiapine and sertindole died, but none of these deaths were mentioned in the scientific literature.6 Therefore, if we want to find out how lethal these drugs are, we should look at trials in dementia, as such patients are not so likely to have received antipsychotics before randomisation. Randomised trials in dementia shows that for every 100 patients treated for a few weeks, one is killed by an antipsychotic, compared to those treated with placebo.7 It could even be worse than this because deaths are seriously underreported in published trials. For example, a review found that only 19 of 50 deaths and 1 of 9 suicides on olanzapine described in trial summaries on websites also appeared in journal articles.8

There is no evidence that mechanical restraint in belts or seclusion has any benefits, but these treatments can also be lethal. Violence breeds violence and when psychotic patients become violent, it is very often because of the inhumane treatment they receive. It may also be because they get abstinence symptoms when they drop a few doses of an antipsychotic because they are very unpleasant to take, which can include akathisia – an extreme form of restlessness that predisposes to both suicide and homicide.1

Electroshock is also forced on people although it doesn’t seem to work for schizophrenia and although the effect on depression is temporary, which often results in a series of shocks.1 About half of the patients get memory loss1 and the more treatments they get, the more severe is the memory loss.9 Some psychiatrists claim that electroshock can be lifesaving but this has never been documented whereas we know that electroshock may kill people: about 1 in 1000 patients die.10

Another reason for using force is if patients present an obvious and substantial danger to themselves or others, in which case they can be involuntarily admitted. However, this is not necessary. The National Italian Mental Health Law specifies that a reason for involuntary treatment cannot be that the patient is dangerous. This is a matter for the police, as it also is in Iceland, and patients in Italy can decide that they want treatment elsewhere.1

Forced treatment does more harm than good and it kills many people, not only because of the direct harms of the drugs but also because of suicide. A register study of 2,429 suicides showed that the closer the contact with psychiatric staff – which often involves forced treatment – the worse the outcome.11 Compared to people who had not received any psychiatric treatment in the preceding year, the adjusted rate ratio for suicide was 44 (95% confidence interval 36 to 54) for people who had been admitted to a psychiatric hospital. These patients would be expected to be at greater risk of suicide than other patients (confounding by indication), but most of the potential biases in the study favoured the null hypothesis of there being no relationship. An accompanying editorial noted that some of the people who commit suicide during or after an admission to hospital do so because of conditions inherent in that hospitalisation.12

I fully admit that some patients are very difficult to treat optimally without using force. But it seems that, with adequate leadership and training of staff in de-escalation techniques, it is possible to practice psychiatry without using force.1,13,14 In Iceland, belts have not been used since 1932, and there are psychiatrists all over the world who have dealt with deeply disturbed patients for their entire career without ever having used antipsychotics, ECT or force.1

I believe we have to abolish laws of forced admission and treatment, in accordance with the United Nations Convention on the Rights of Persons with Disabilities.2 Abandoning using force will be harmful to some patients but it will benefit vastly many more. We will need to work out how we may best deal with those patients who would have benefited from forced treatment in a future where force is no longer allowed.

Peter C Gøtzsche graduated as a Master of Science in biology and chemistry in 1974 and as a physician 1984. He is a specialist in internal medicine. Co-founded the Cochrane Collaboration in 1993 and established The Nordic Cochrane Centre the same year. He became professor of Clinical Research Design and Analysis in 2010 at the University of Copenhagen.

References

1 Gøtzsche PC. Deadly psychiatry and organised denial. Copenhagen: People’s Press; 2015.

2 United Nations Convention on the Rights of Persons with Disabilities. General comment No. 1 2014 May 19. http://daccess-dds-ny.un.org/doc/UNDOC/GEN/G14/031/20/PDF/G1403120.pdf?OpenElement (accessed 1 April 2015).

3 Gøtzsche PC. Does long term use of psychiatric drugs cause more harm than good? BMJ 2015;350:h2435.

4 Leucht S, Kane JM, Etschel E, et al. Linking the PANSS, BPRS, and CGI: clinical implications. Neuropsychopharmacology 2006;31:2318-25.

5 Khin NA, Chen YF, Yang Y, et al. Exploratory analyses of efficacy data from schizophrenia trials in support of new drug applications submitted to the US Food and Drug Administration. J Clin Psychiatry 2012;73:856–64.

6 Whitaker R. Mad in America. Cambridge: Perseus Books Group; 2002.
7 Schneider LS, Dagerman KS, Insel P. Risk of death with atypical antipsychotic drug treatment for dementia: meta-

analysis of randomized placebo-controlled trials. JAMA 2005;294:1934–43.

8 Hughes S, Cohen D, Jaggi R. Differences in reporting serious adverse events in industry sponsored clinical trial registries and journal articles on antidepressant and antipsychotic drugs: a cross-sectional study. BMJ Open 2014;4:e005535.

9 Sackeim HA, Prudic J, Fuller R, et al. The cognitive effects of electroconvulsive therapy in community settings. Neuropsychopharmacology 2007;32:244-54.

10 Read J, Bentall R. The effectiveness of electroconvulsive therapy: a literature review. Epidemiol Psichiatr Soc 2010 Oct-Dec;19:333-47.

11 Hjorthøj CR, Madsen T, Agerbo E, et al. Risk of suicide according to level of psychiatric treatment: a nationwide nested case-control study. Soc Psychiatry Psychiatr Epidemiol 2014;49:1357–65.

12 Large MM, Ryan CJ. Disturbing findings about the risk of suicide and psychiatric hospitals. Soc Psychiatry Psychiatr Epidemiol 2014;49:1353–5.

13 Fiorillo A, De Rosa C, Del Vecchio V, et al. How to improve clinical practice on involuntary hospital admissions of psychiatric patients: Suggestions from the EUNOMIA study. Eur Psychiat 2011;26:201-7.

14 Scanlan JN. Interventions to reduce the use of seclusion and restraint in inpatient psychiatric settings: what we know so far, a review of the literature. Int J Soc Psychiat 2010;56:412–23.

AFTERSHOCK, by Connie Neil

An offering in support of the CRPD campaign, an excerpt of my (as yet) unpublished non-fiction book about my ECT and forced drug experience and my work to recover a mental balance.

 

Connie Neil

Shock survivor and anti-psychiatry activist

 

AFTERSHOCK

 

They wheel me into the white, tiled room and shunt me onto a table. “Oops-a-daisy. Slide over now, there’s a good girl.”  Globs of cool slime smudge onto my temples, my chest, and the electrodes are lodged in those spots. The needle pierces my vein and fuzz creeps into my mind.

Wait! I can’t breathe.’  I can’t move or speak. My lungs are paralyzed. I try to tell them, try to scream for help, but a mask with a hose attached blocks my mouth and nose, and I know no more. Except I feel that I am dying.

How long after? Hours? Days? I have no idea how I got here. “Hush now, Connie, don’t make a fuss.” Am I making a fuss?

Perhaps my name brings me back to this world. I know nothing else. They show me how to hold a spoon and eat. That man – Bob — keeps fidgeting around saying, “Hush,” and that he is my husband. That shrieking noise is my baby, they say, held up to me by a leering old woman. I know nothing; care less.

Something bad has happened.  I no longer exist. A shell is left in my place.

* * *

That was my first shock treatment and it was in a general hospital with anaesthetic and so-called relaxing drugs, a kind of chemical curare that stops all automatic movement –like breathing, like heartbeats. This method today is called the improved gentle ECT form by Max Fink, teacher of ECT. (Fink, 1999)

      Like any sane person, given the disastrous reaction, I refused the next session. True to protocol, that is the signal I am clearly insane and cannot be trusted on the streets of Hamilton. I am institutionalized “on the mountain”, the crazy house the Ontario government runs with our tax dollars, for 20 more ordered against my will and without anaesthetic, so I can feel the full horror of destroying my mind.

If they knew the truth, I reasoned, of the permanent brain damage that was done by this seemingly barbaric operation, it would be outlawed, banned. There must be some major accident, something broken in the machine, which caused this horrendous aftershock for me.

But no:  they already knew. This burning my brain away, this slump in my ability to learn was exactly what was planned. No, mine was a typical case handled in the socially accepted manner.  Troublesome, opinionated, loudmouth rule-breaking new mother must be brought into line, or buried where nobody can hear her complaint. Shock will fix her.

And what did they wipe out? My acting/writing career, musical training, 8 to 15 years of memory, any trace of self-confidence, my IQ, EQ, every Q.  All depleted or burned away with every session.

Where can I go to learn to be whole? Shrinks? Hell, no. To whom can I appeal when my every comment is deemed crazy? Neat trick, these bio-psychiatrists and their ilk concocted. This treatise is not about me:  I am fine, perfectly fine, just fine, really fine; fine with my alternatives to achieve adequate balance but nowhere near what I was put into this lifetime to achieve. Yes, I am fine, but what of the millions over the past (2016 – 1939 which equals) 77 years who succumbed to this torture? Shock is ordered by an elitist group of mostly men upon women who make up two-thirds of the targeted victims fed electroshock purported to be a cure for depression, for sadness, for frustration, for reaction to reality that is unfair (Burstow, 2014, pg 195).

And what behaviour did I exhibit that was “a danger to myself and/or others”, the criteria for locking away recalcitrant members of society exhibiting egregious harm? I had a baby, got flu, and failed to wrest control of my baby’s care from my obsessed mother-in-law where I was parked while hubby wrote his final exams in another city. Shock was what I deserved, they judged. My adult history showed no crazy markers to convince authorities I was in need of their ‘help’. Before their infringement I had many successes.

 

What I Lost to Electroshock

We set out in two cars towing a trailer of our dismantled farm porch theatre set on a crisp winter day to drive 150 miles past Montreal to Lennoxville where Bishop University hosted the Inter Varsity Drama League Festival. Long trip. It was Ryerson’s first entry in five years. Fellow actor Robin Brewer and I sampled the whiskey bottle to keep warm until Donald Sutherland, our English teacher and chaperone, poured the remainder out onto the snow at our second stop. No more booze.

For our technical rehearsal, we re-constructed the set, designed and built by Bill Underwood, the only one not studying Radio and Television Arts. He later made his theatrical career at Stratford. The set was praised for simplicity and atmosphere by our adjudicator, Montreal producer Rupert Caplan. In the brief time allotted, we ran lights and cue-to-cue lines while director Ken MacKay roamed the gods checking that our projection was clear.

It would be surprising if we did not do well as Ryerson attracted talented young people. And we cleaned up with Tennessee Williams’ 27 Wagons Full of Cotton, his one-acter that the controversial Hollywood movie Baby Doll was based on. We took Best Production, Best Director, Best Actress and Honourable Mention for the lead actor.

At the awards dinner, when Rupert Caplan announced, “The winner is Connie Neil” he looked at me in surprise, did not recognize me off-stage, the mark of a talent for disguise. As I rose and walked forward, he added, “and accepting for Connie Neil is . . .” I had to tell him, “Connie Neil”. He fumbled, “Is it you?” I nodded.  For the part of simple-minded Baby Doll I was padded to a plump roundness so that my ripped costume after the rape only revealed blood and bruises, and not my usual sleek shape. He said, “Although this is not a great play, it is an example of how a good performance can make a play great because the audience believes in it. Connie achieved a great degree of believability. She is a promising young actress.” Two universities choose that play; only ours won awards.

At the Banff School of Fine Arts that summer I took both acting and playwriting to help decide where I best fit. At the auditions for their mountain dialect play, they moved me up to advanced acting, the Shakespearian studies, and gave me the lead of Barbara Allen in the 3-act play Dark of the Moon. In this challenging role I was wooed by a witch-boy, raped in church, gave birth on-stage, mob-killed and left dead and sprawled on a rock for the witch-boy to play with. Brought the house down. People hung around backstage to weep and tell me how strongly I affected them with my performance.

I also got high marks in playwriting.

For my final Ryerson year I took the lesbian role in Jean-Paul Sartre’s “No Exit”, the play of three disreputable characters in a waiting room for the afterlife that for them is hell. I received Honourable Mention for acting: No mean feat in competition with eleven universities.

Aside from these honours I performed in musical and comic revues, dance shows, piano recitals, singing, radio and TV acting and wrote a number of plays.

All this stopped with electroshock. In reviewing old papers I came upon letters of congratulations; there had been national newspaper coverage. One was signed “Sharon”, and from the content we had been close.  She named people I recognized, but she is lost in the area of my brain burnt out by thoughtless shock docs. What does it matter to them that a few lists or personnel are missing? It matters not at all.

Oh sure, my interests were still present, but all I was capable of was chorus work, minimally. Once I was helping choreograph Toronto City Hall Revue dance numbers. In the grand finale the lead dancer was to lift me, spin around and roll me out for the big finish. Because I had demonstrated both male and female roles, in performance I lifted him, spun him around and rolled him out for the final TA-DA. Did not even realize I had done it until we were in the wings and he asked, “What was that all about?” All I could do was laugh, and never tempt that brain shock mistake again on stage. Performing, even as an amateur, was over. That little brain glitch meant I was unreliable on-stage.

One reason I did well performing was my prodigious memory: All the script changes were imprinted on my mind. If an actor was in the wrong place or gave the wrong line, I could cover because I remembered every nuance of the rehearsal period. All gone now. No more connections. And what enrages me today is that psychiatry knew this destruction is the result of ECT, always the result, and in their arrogance, their greed, their lusting for the easy way around difficult personalities, they hide the truth they know; brain damage is always the result.

 

What Little They Disclose

Today there are legislated informed consent discussions as in the 2002 Andy Behrman memoir Electroboy. I notice the bio-psychiatrist and not the shock doc gives the information to him and his parents, outlining the different methods and expected results. It is now admitted the chief problem is memory loss, a condition even my nice psychiatrist suggested was brought on in me by my “mental illness”. They like to blame the victim:  it is how they are trained.  The classifications are: 1) neurotransmitter theory shows ECT is like antidepressant drugs and affects serotonin, dopamine and norepinephrine; 2) anticonvulsant theory claims ECT seizures condition the brain to become seizure-resistant; 3) neuroendocrine theory says these convulsions cause the hypothalamus to release mood stabilizers; and 4) brain damage theory admits that the damage created gives the illusion of mental stability.

Note that these are theories, not proven scientific facts that explain how ECT treats depression or mania. The fact that ECT results are unproven does not stop psychiatrists from charging ahead, delivering their shocks and, when they fail to ‘work’, adding more series of shocks until you no longer complain. You learn what torture comes from objecting.

 

 

THREE DECADES LATER

Close to the end of this retreat with meditation teacher Cecilie Kwiat at the Dharma Centre of Canada I was able to report that I could see what was hidden behind that all-encompassing blob of anger that dogged my steps for the past five years. Every word of those complaining 560 pages in my crumpled discarded memoir was filtered through the veil of my unrelieved anger; and I thought all along that anger, rage, fury was all that there was.

Since I had loosened up throughout this year, attending four retreats and finishing the story of what ECT had done to my very long life, I volunteered as copywriter to publicize teachers. Research for this chore interested me in attending Body, Speech & Mind with Albertan Cecilie Kwiat. She was a close student of Venerable Namgyal Rinpoche and had produced that text book from her (and other’s) notes of his teachings on a sea journey to Peru. And I had studied that text with both Buddhist nun Karma Chime Wongmo and the Rinpoche. I thought I knew the subject. I thought it would be easy.

But just as Cecilie taught, every moment brings a brand new “I” with a possible fresh outlook and opportunity for insight.

She arrived in time for the Namgyal Memorial weekend, a gathering that brought many old students to the centre to pay tribute to our lama who passed to the higher realms ten years past.

When I turned in my seat during the temple rituals I caught her brilliant smile, her hearty laugh, and I realized I had met her once before during a longer retreat that she attended with a few of her students. Seated side-by-side in the Tea House I had heard her answer a student’s questions with such clarity that I had to comment, “That was perfect,” and she smiled, “Thank you.”

This could be a stellar retreat. The morning after her first day of teaching as I lay between dreamland and waking I saw my brain, full of holes, covered in scabrous dead areas. This, I heard, was my leaky boat that would not carry me far on this river journey to enlightenment. Then, with tears wetting my face I heard my dead guru say, “You need mentoring!” Not even sure what that meant, I approached Cecilie after class and reported that little scene, expecting perhaps a name and phone number on a slip of paper. Instead, she made me cry. I tried to make my plea clear to her with dry eyes, but she poked me in the back, saying, “You’re frozen. Cry!”

She reached and captured my wrist and pulled me to her, seating me in her lap. Oh no! I must not sit in teacher’s lap! I would break her. Then what would the class do for a teacher? In my research I learned she had been run over by a gravel truck – twice – in a motorcycle accident in her youth, and was told she would never walk, never have a baby. But she fooled the doctors, and did both.

I was very awkward on her lap, trying to hold my weight off her while she questioned me about my history that I blubbered out to her, and she told me about her difficult childhood being called a Nazi because of her father. I blurted out, “Was he?” But that was not the point she was making. Some students were still in the temple. What a show we were putting on! They drifted away. Still on her lap like a toddler, she had me write in my notebook: “Here I am right now. As I am, may I be well and happy. May I be free from enmity.” It is the translation of White Tara’s mantra, my yidam, my guardian, and I had forgotten her Loving Kindness practice. That forgetting of crucial information was what was still, fifty years after shock, the plague accompanying ECT that thwarted my need for spiritual wholeness. I am ever unsure of what I know, what is missing.

I carried on with classes and exercises, but it took days to settle this stormy episode. I passed her a note for a private talk on vanishing emotions, a failing of mine because ECT was ordered for people who cause trouble, disturb others, have uncontrolled emotions; and so was my great fear. I over-react and, not only bury my emotions, I forget I have done so.

I explained to Cecilie that an unfeeling state makes everyday life easy, tempting, that nothing bothers me in that state, but because I do not notice the trigger, I cannot climb out. I am worried that outlawing my anger will kill all the emotions.

She talks about my heart, but I know my heart is closed. She tells me that is not true, that she does not work with people who have no heart: She can see my heart. Again she makes me write; “I aspire to be free from anger. I will un-armour my heart (and may armour it up again).

Her next class is on awareness of feelings and I take in what I can. There are fifty (some say 52) skulls worn by the deity as a necklace. These transformed mind states are now seen to be his adornment, his conquered wisdom. We must describe these mind states in our own language. We are often mistaken in what is our mind state, a result of conditioning. Change is all that is constant.

This has been a very cold and rainy retreat. The storm blew out our power for a day. Snow and mud makes walking a study in problem-solving – from one dry-ish clump leap to somewhere safe. We are to move from one form of meditation to another – sit, do body scans, review, walk slowly with one foot on solid ground, one foot over the abyss. Sheer boredom of looking at 25 of the negative, dismal mind states pushes me with my umbrella out of the temple to walk the centre, to sit under the shelter with the huge peace Buddha statue the Sayadaw, Rinpoche’s teacher, built here and all across the world. And here I caught a glimmering of another mind state.

I often wondered what I did in a past life to be born into this family. Cecilie phrased it differently: Whoever made me may have put me in this family, through attraction, to learn an important lesson. Could the lesson be Loving Kindness? To armour and de-armour my heart? Forgiveness? I already know anger.

I report that anger hides a great wall of refused and unresolved forgiveness. I see the wall, name it unforgiving, examine it and its many instances in my life.  I even refused under hypnosis – not just once – to forgive especially my father. No. I won’t. Even I know these denials expand to big trouble in river city. With that early decision, unforgiving moves to other beings until it is global: I am intransigent. I judge.  But now I think about who needs forgiveness (me, duh) and what qualities he (Dad) had and who this reminds me of (guess).

When Cecilie declares Congratulations! I stipulate I have not forgiven, only seen the awful wall of it. She repeats congratulations, that having seen it, the wall will dissolve bit-by-bit, one-by-one. She can see I can be kind and I agree I can be kind. I am kind. I wonder what is behind that dissolving wall.

To close the retreat we celebrate Cecilie’s 74th birthday on November 1st with two great cakes, balloons, gifts, and a healthy meal.

She took a compartment for her train trip back to Alberta, got in her car at the station drove off and hit black ice, a major accident. Many surgeries, many crises later, by Christmas, she was working her way into wheelchair rides and therapy to help her briefly stand. When my heart clutched at the photos in casts, amid hospital paraphernalia, what I take heart in is her still-brilliant smile.

If she can do that, so can I. Nothing can break Cecilie Kwiat. But just in case, I send her Loving Kindness.

In a noisy hostel in St Maarten, I cannot sleep for the rowdy drunken crowd outside my dark window, so I practice Metta. They leave and later I see in my dorm a white-robed figure approach my lower bunk. She offers something in her right hand. Is it a blessing? I see a square of light before my open eyes. On it I see a quick sequence of hieroglyphics. There’s a dark horse’s head, but other images change so quickly I can hardly register them. Then it is over and I ponder these screened messages.

On February 15, Cecilie Kwiat passed on into communion with the enlightened who have no need of their corporeal body. I miss her. And thank her for that parting visit.

 

An Understanding Forgiveness

Our school reunion lunch was set for the hottest July day, so I left my car in Oshawa and sailed into Toronto on the commuter GO train – early.

Walking up from Union Station I was so early that I found the one shaded park bench on King Street and parked myself at the end where a man of a certain age invited I might sit and join him. He wore tan slacks and a woven beige golf shirt with new trainers on his feet and a neat pewter-coloured close-clipped hairstyle. His teeth were perfect.

“Can you tell me where the . . . uh . . . the . . .” He scowled and concentrated on the elusive words, then triumphant, “the Eaton Centre is?”

I could and did. It was within walking distance, but he stayed seated. That was not what he wanted. We spent an hour piecing together what he needed to say.

He tried again, this time searching for the French word for psychiatrist. “I was . . . sis . . . sis”

And I supplied, “Psychiatrist?”

“Yes, but . . . neuro . . . sus . . . sus . . “

“Neuro-surgeon?”

“No, neuro . . . neuro sus . . .”

“Neuro-scientist?”

“Yes!”

Lordy, I was sharing a bench with the enemy. In my mind, this was the guy who made the pills, who screwed up my brain, who pushed me to ‘gentle’ shock treatment. Does the neuroscience model of brain-based consciousness really hold up? Here was the scientist behind psychiatry. And just look at what he had become: a wreck, my victim.

We painstakingly translated his story. Six years previous he had a stroke, could not speak. But his wife helped him and they were just fine together. Every time his wife came up in what I loosely describe as conversation, he cried. I understood the stroke had taken away his emotional controls. Here waited the enemy, at my mercy.

He also could not recall the word for “tomorrow”, not surprising as he was captured in the ever-constant now. What he needed to tell me was that his wife had died two years back, was buried in Barrie, where he was headed, just resting and walking in between trains. He had come from Belleville and, just like me, had walked up from Union Station to this shaded bench.

He stopped trying to control his tears and the quavering in his voice: He must tell me his tale. The tears were just scrubbed away by his hand. It was difficult to piece together what disturbed him.

Neither he nor his wife realized that her stomach pains were serious: He particularly grieved that he did not understand in time. When finally she was settled into hospital, the medical staff and his wife dismissed him, saying to come back “Tomorrow”. But when tomorrow came, she was gone. And he was alone. “Alone,” he cried, “alone.”

Two years were not enough time for him to accept her death and his damaged condition. So, what to do with the rest of his life? How to go forward?

Because he emigrated from France, I asked if his words were easier available in French. But no, it made no difference. Did he have friends, support, family there? But no, and he loved Canada and his life here – before his calamities.

I spoke as a Buddhist of the essence of a person going on eternally. And this sparked an interest and further distress. She spoke in his head as she was dying and declared there was no more suffering, that she was happy now, that she was fine. And then he went to the hospital, pleased with her stated recovery, and found her dead. What he cannot set aside is that she died alone, and now he was alone, struck asunder. The only comment that brought him some lightening of mood was when I observed that, “with your close connection, you will see her again. She will wait for you. You will be together, not alone.”

“Yes. I know it.”

And with that, he stood, offered his hand to shake, to stroll back the way he had come. Done. I joined my fellows at our reunion lunch. Good lunch; but a better chance meeting that corrected my biased view of all psycho-workers.

No matter what we achieve in this life through education, fame, important works, in the end we carry the exact same personal conditions that are the core of our life. Previously I could not see the purpose of this exalted class of doctors that had threatened my safety, harrowed my career, and damaged my brain. But this archetype of soul examiner invited me onto his bench to reveal his crying heart. Such hurt revealed; I could not do other than extend my hand and grasp his.

I see with softer eyes.

 

References:

Behrman, Andy  (2002). Electroboy; A Memoir of Mania.

New York: Random House, Inc.

 

Burstow, B. & LeFrancois, B.A. & Diamond, S. (Eds.) (2014) Psychiatry Disrupted: Theorizing Resistance and         Crafting the (R) Evolution    

Montreal:  McGill-Queen’s University Press

 

Fink, M.  (1999).  Electroshock: Restoring the Mind.

New York: Oxford  University Press