I once believed that thoughts of suicide were common, plans typical, and success inevitable. My schizophrenic auditory hallucinations (hearing things that aren’t there) filled my ears with voices saying things like “Die, girl, die!” I was immersed in delusions that there was a mysterious, ultimate deep meaning that required my suicide. In September of 2001, I almost succeeded in hanging myself.
Yet, I did not want to die. It was the voices and the deep meaning that drove me towards death, promising me that this was the right thing to do. On many occasions, while delusional, I believed that I had to die for a greater cause.The neuroscience research I performed when well (I have a Master’s degree in the field) would be twisted when I was ill. Most commonly, my delusional mind would think that tiny rats were eating my brain, but that my brain regenerated — a “neuroscientific” conclusion that my brain invented to explain how it could be eaten without me dying. I would, in excited cohorts with the deep meaning and voices, determine to kill myself so that other neuroscientists could research my phenomenal brain and thus cure central nervous system disease and injury. My death would give those paralyzed the ability to walk, stroke victims their language back. If my death could accomplish all this, it was surely a small price to pay, the deep meaning told me.
Whenever I came close to suicide, I was declared a danger to myself and was admitted to hospital. There, I was treated against my will. Eleven times over five years, I was involuntarily hospitalized. Also out of my control was medication with sedatives and anti-psychotics. I regularly refused to take the pills they determined I needed, believing they had rats in them. But refusal was simply met with injections. I hated it, fought back and screamed with all of my might. I felt I was a victim of a harsh and cruel mental health system. I had no hope, no wish but to end it all.
The system and its psychiatrists had the power to take that wish away from me. Despite my resistance, hospital staff kept me safe from myself when I could not do so on my own. Those whom I thought were my jailers were actually my caregivers. The insight into all of this eluded me; anosognosia — the inability to recognize one’s own disease — plagued me, as is the case for many others who suffer from schizophrenia. As I recovered, however, I could start to see that I had been protected from myself. I was still alive.
Being involuntarily hospitalized and medicated against my will saved me from my suicidal self. The voices and deep meaning were silenced with mere little pills. Once stable, I could continue in recovery with psychotherapy and metacognitive training, having learned — the hard way — the positive power of anti-psychotic medication.
I now hear people lobbying for the end of involuntary treatment for people such as myself who suffer from a severe mental illness. It is a personal journey, they say, and everyone should be free to reject hospitalization and medication. It is a right, they say, to be ill; even, that there is no such thing as being “ill.”
So should I have had the right to refuse life-saving treatment? Would I have had a better life if I had not been admitted into a safe place and medicated toward death-defying insight? I am certain beyond a doubt that had I not been treated, I would have succeeded in suicide, joining the 10% of people with schizophrenia who kill themselves.
The right to live supercedes the “right” to not be involuntarily treated for mental illness. Those who are suicidal when ill but want to live when not, should have the safety of having another person decide to give us the chance to return to our lives and be well.
Recently, I was woken from sleep by a phone call. It was my son calling from his supportive housing residence. He could not locate his identification cards and was yelling at me in a loud voice asking where they were. I knew that he needed the ID to open up a bank account the next day and referred him to the program administrator who had kept his ID in a safe place. I checked with the program administrator next day, who said that he had called her and his tone had been quite reasonable. As a rational person, I recognized that the loud angry voice that I had experienced came from the heightened anxiety that he felt because he feared that he may have lost items which were vital to him performing the necessary step of opening up a bank account. As a mother caring for a son with a serious mental illness, it has been a common experience to be the brunt of such outbursts over the years. I do understand, however, that my son’s outbursts of anger come from a place of intense anxiety.
But here is the problem. There are so many professionals in our current mental health system, who are about my son’s age, but do not have a serious mental illness, whose method of communication is also distressing. For example, a male nurse at a local Emergency Ward, in response to my inquiries asked “How old Is your son, Mrs. Mochnacki?” I guess he thought I was being an overprotective mother. His sarcasm came from a place of ignorance, as he was unaware, and did not bother to find out, that my son’s diagnosis involved memory problems and other challenges. The same hospital gave me exemplary service when I was treated for breast cancer. Perhaps their cancer care department could educate some in the psychiatric department about how to appropriately treat patients and their families.
Often our difficulties are with bureaucrats whose heightened sense of self -importance, an unattractive quality coupled with an unacceptable ignorance of the symptoms of mental illness, makes for disaster. A case in point is the “Senior Director of Transformation and Strategy” who established the vision, mandate, and principles for the development of a Mental Health and Addictions Crisis Hub while “securing government approval for a ‘transformational’ model that introduces coordinated, wrap-around care, with seamless transfers, and integrated services”.
Problem is that many people with serious mental illness will not use this Hub as they have the symptom of anosognosia which means that the person does not have insight that they are ill. Anosognosia or lack of insight is the principal reason those with schizophrenia and bipolar disorder do not take their medication and do not seek care. The opportunity was there for this individual to find out about this symptom, as I sat on a Council which he headed for three years, but he chose not to find out. Another bureaucrat from the same Council told me that the College of Physicians and Surgeons of Ontario (CPSO), a regulatory body, would have to determine that anosognosia was a symptom of serious mental illness! It is not CPSOs function to determine symptoms of diseases.
It may be time for some mental health professionals to look in the mirror and acquire some insight of their own. Recently an Ontario Health Team was challenged to find family representatives for their leadership council and had learned that family caregivers, in past councils, had felt condescended to. After becoming aware of this fact, they then issued a recruitment flyer to solicit applications for positions for family caregivers that had been created on their Leadership Team. The flyer stated that successful applicants will be “matched with a point person/ mentor to successfully support you in your role”. Why do we need support? We are articulate adults who have valuable information to share and have done this for years as numerous government policy papers will attest to. Is not the shoe on the wrong foot? Should it not be the professionals who need to learn how to listen? By indicating that we are the ones needing support is just another example of condescension. Positive change will not happen when families are kept in the stepdown position.
Recently, I complained to the local consumer survivor organization about the wording of a terms of reference of one of their programs. It said “we do not define force and coercion as help”. I asked whether this was a reference to involuntary treatment and explained that many of the families that I knew had depended upon this policy to get needed help for their loved one. The executive director wrote back and did say that involuntary treatment had worked for some but a later letter from the Board of Directors refused to change the wording even though the threat of the availability of involuntary hospitalization traumatizes families of those with serious mental illness who must rely on it to protect the rights of their loved ones to attain wellness and be alive.
In answer to my first email of complaint, the executive director states: “The Peer Support movement ………was founded on the need for Consumer/Survivors to advocate for rights protections and positive change in the healthcare system and beyond, as historically, people with ‘serious mental illness’ often had their rights stripped from them. The pioneers of the consumer survivor movement have been advocating for positive mental health care reform for decades, and thankfully we at least now have the system using the language and philosophy of ‘recovery’ and recognizing and embracing the value of Peer Support for example, rather than the antiquated belief that people with lived experience all have a life-long condition which must be treated ‘professionally’ and clinically and that medication for all of us, is non-negotiable. That’s simply not the evidence, and as a result the system has seen positive changes, moving away from this and bringing in more holistic and diverse views and understandings.”
Recently, emergency services were called to one of their programs. According to an eye witnesses, this is a common occurrence. A woman in psychiatric distress was strapped screaming to a gurney and taken to hospital. Where is the human dignity in this? Is this a good example of the effectiveness of “Peer Support”? This sad spectacle of human suffering fuels stigma and public anger against all of us including families who are supporting a loved one with a serious mental illness. The crisis that this poor woman experienced may have been prevented if she had access to “antiquated” treatment and the availability of medication.
The consumer survivor movement speaks for an articulate vocal minority blinded by a philosophy which sadly impacts upon us all with such profound negative consequences.
One of the popular messages coming from the mental health system is the call for “parity”, as people in the mental health system demand equal funding for mental health care; equal, that is, with physical health care. But what they have not appreciated is the fact that physical health care involves physical health literacy. There is an acceptance that there are many physical illnesses each with their own set of symptoms. In contrast, the mental health field does not have this quality as we hear references to the euphemistic “mental health issues” but little reference to terms such as “schizophrenia”, bipolar disorder, or major depressive illness to name a few of the mental illnesses. Too many employees of mental health agencies have no training in mental illness and this can be a risk factor which causes hurtful judgements, and fuels systemic attitudinal barriers. Families are often blamed for their loved one’s mental illness as some of these employees have had educations influenced by psycho dynamic theory which puts emphasis on early childhood experiences.
Change comes from the ground up. Professionals could serve us better if they took the time to appreciate the challenges which our loved ones have faced. My son, who for most of his childhood suffered from undiagnosed Asperger’s Syndrome. That is a disorder which involves a deficit in understanding social cues, so he experiences intense anxiety. One time in Grade 3, he was with his twin brother in an exercise about social skills. He was asked who his best friend was in front of all the other classes in the gymnasium where this exercise was held. He finally blurted out that his best friend was his twin brother who was sitting beside him. The presiding teachers were not happy with his response and chided him to come up with another answer. After a while of this taunting in front of all the other children, he finally blurted out “F—Off”.
I was summoned to a dressing down by the same teachers and my son was given a two week suspension.
Isn’t it time, that we cut with the crap, and start taking mental illness seriously? We need mental health professionals who take the time to find out about the symptoms of the different mental illnesses that makes life so challenging for our family members? Take the time to listen to families and read and follow the recommendations of those myriad of reports that have been gathering dust over the years. The first recommendation of the three decades old Ontario Government Graham Report advises that we “place priority on providing support to individuals and their families who experience serious or prolonged mental illness or impairment”.
I invite mental health professionals to work with families to honour this recommendation.
Kathy Mochnacki is a registered social worker and Chair of the Board of Directors of Home on the Hill Supportive Housing. She is the mother of an adult son with serious mental illness. Home on the Hill can be found at
Our postings for the past few weeks have been a bit heavy so we thought we would lighten it up with a more personal post about us.
In early June, I received an e-mail from a writer for the Toronto Star who had uncovered a photo of my son and I in their archives from 1984. She loved the photo that was taken for a story the paper did about the book Sorry Daddy A Father’s Guide to Toddlers which followed from Daddy Dearest A First Time Father’s Guide. These were two of four books I did with the brilliant illustrator, David Shaw. She wanted to update the story for Father’s Day which she did and this is what she produced:
That was followed shortly after by a very lengthy profile in the Hamilton Spectator of blogger Dr. David Laing Dawson. David has decided to retire from psychiatry effective the end of July and is leaving Hamilton, Ontario to return to British Columbia where he was born. That explains why he hasn’t written much of late as he is busy winding up his practice and his other activities. He will return.
David, and his wife, Marlaise, have been at the centre of the cultural life of the city since at least 1996. As the profile of them in the local papers said “In some ways they lay the groundwork or at least set an example for what followed in the arts here — the burgeoning of James Street North, the emergence of the Pearl Company and the general cultural “moment” that we’d been experiencing before COVID and arguably are still experiencing, through it, struggle as it is.”
The Convention on the Rights of Persons with Disabilities established by the UN came into force in 2008 and has been signed by 163 countries. The intent was to protect the rights and dignity of the disabled but, in doing so, the Convention limits what signatory states can do to help those with the most serious of mental illnesses. They have done this by banning any involuntary committal or treatment for those who are a danger to themselves or others, banning treatment orders to help those who continually relapse stay out of hospital, and recommend that all regardless of the severity of their mental impairment go to jail rather than into treatment when they commit offences.
The UN Committee wrote: “Committal of individuals to detention in mental health facilities, or imposition of Community Treatment Orders contravene the convention and must be eliminated.” and “In the area of criminal law, recognition of the legal capacity of persons with disabilities requires abolishing a defense based on the negation of criminal responsibility because of the existence of a mental or intellectual disability.”
Canada ratified the Convention but not those provisions. A small number of countries also refused to ratify those provisions including Australia, the Netherlands and Norway. Thus far, the US is one of a very few who have not ratified it.
Both psychiatry and families oppose these mandates. Lancet Psychiatry wrote that these articles threaten to undermine critical rights for persons with mental disabilities, including the enjoyment of the highest attainable standard of health, access to justice, the right to liberty, and the right to life. Stigma and discrimination might also increase.
Dr Paul S Applebaum, writing in Law and Psychiatry, said “Although exemplary in many respects, the convention contains provisions that threaten to disrupt long-standing approaches to mental health law, including civil commitment and guardianship; interfere with efforts to protect people with severe cognitive and emotional impairments; and leave many people with disabilities worse off than before.”
Families of those with serious mental illnesses also object to these provisions. Both the BC Schizophrenia Society and the Saskatchewan Society sent letter to the Prime Minister in 2020 outlining their concerns.
The issue of abolishing Not Criminally Responsible is also troubling. How can someone whose brain is corrupted by serious mental illness form intent? They cannot and intent or mens rea is the basis of criminal law. You cannot convict someone for a crime who had no intent or the mental ability to form intent. Crimes committed by people who are so mentally deficient from psychosis should not be punished but rather treated. The UN Convention, however, would agree with those US States that still have the death penalty and allow people with schizophrenia to be executed.
Despite the history of treating the mentally ill with understanding going back to before 1800, the UN is attempting to reverse this. Prior to 1800, a mentally ill person who committed an offence was turned over to the family for care because the mental illness prevented criminal prosecution. In 1800, the British Parliament passed the Lunatics Act whereby mentally ill persons were detained indefinitely as no treatments existed. This was replaced in 1843 by the M’Naghten rule where an offender can be judged not guilty by reason of insanity and sentenced to treatment in a secure facility. This defence is recognized in countries using British Common Law with the exception of the US states of Idaho, Kansas, Montana, Utah, and Vermont. Those states, however, still use ability to form intent as a criteria. The UN’s regressive policy nullifies history.
Every jurisdiction that allows for involuntary committal has stringent safeguards to prevent abuse. There are limits on how long someone can be detained and, in Ontario at least, patients can have a lawyer and appeal. Regular reviews are mandated to prevent anyone from being forgotten or held longer than they should be.
Canada has just nominated a law professor from the University of Windsor to the convention and sadly it appears that she knows little of mental illness. I have attempted to talk to her about the mental health dictates of the UN and to ask how much she knows of serious mental illness but she has yet to reply to me and the media relations staff at the University have been unable to get her to reply as well. The most vehement opposition to involuntary committal and community treatment orders are lawyers specializing in disability issues so I fear she is in that camp.
And, as I’ve pointed pointed out in my book, the UN is heavily influenced by the Mad in America advocates.
I understand that there is pressure being exerted for the US to ratify the Convention so I would suggest that Americans reading this lobby to prevent that or to at least ensure that the negative articles for the mentally ill are not accepted if the US ratifies.
After Nazi Germany was defeated and the full extent of the Holocaust became known, Germany agreed to pay compensation to the victims. In 1951, West German chancellor Konrad Adenauer committed to paying “moral and material indemnity” for the “unspeakable crimes…committed in the name of the German people” during World War II. The following year the government signed a set of reparations agreements with Israel and an umbrella group of advocates known as the Conference on Jewish Material Claims Against Germany, or Claims Conference.
East Germany refused any responsibility but when Germany was reunited in 1990, a new agreement was created to compensate those survivors who received little or nothing before. Compensation was made to all who suffered at the hands of the Nazis and not just the Jewish victims. Germany and its citizens have attempted to atone for the atrocities committed in their name and deserve credit.
But what of the Catholic Church? They, and the other churches involved, need to not only apologize to Indigenous people in Canada but to pay reparations for what they did in the schools they ran. Thus far, the Pope has refused to even apologize let alone to consider payments. Indigenous leaders are planning to visit Rome later this year to ask although I disagree with their doing that. If he is unwilling to do so, it is on him and they should not beg.
In the US, the Jesuits have already set a precedent for retributions. Jesuits were active slave holders who then sold and traded their slaves to pay for the upkeep and building of churches and schools including Georgetown University. In 1838, they sold 272 slaves to a Louisiana plantation to keep the school solvent. They have pledged $100 million to the descendants.
The net worth of the church worldwide is estimated to be in the area of $30 billion based on its ownership of churches, schools, presbyteries, hospitals, nursing homes, offices, tennis courts, and telephone towers. The church is wealthy enough that they do not need tax exempt status nor should we be funding Catholic schools as we do in Ontario. Public funding is particularly odious when a number of Catholic school boards in Ontario have refused to fly the Pride flag.
I do find it a bit odd that people are surprised at the cruelty though. Christians proselytize and attempt to convert anyone who is not a Christian or of their particular denomination. They do so because they consider anyone who is not a Christian to be a heathen or, as the Nazi’s called Jews, Gypsies and other, untermenschen – subhuman. If they refuse to accept the teachings and to remain heathens they deserve whatever punishment they get.
I still remember my shock in elementary school to learn of the slaughter of the South American natives by the Spaniards when, in one instance, a chief dropped the bible he was given. And, of course, we have the cruelty of the Spanish Inquisition put to music by the great Mel Brooks in the History of the World.
Because of the revelations about what went on in residential schools, there is now a movement to rid ourselves of statues and names associated with their implementation. Statues of Sir John A Macdonald (the first Prime Minister) and Egerton Ryerson (who introduced public education) are being defaced and there is a movement to rid the name of Ryerson University because they both proposed residential schools.
You cannot change history and singling out two people to be removed from public visibility does two things. First, it suggests that they were solely responsible which is not true. They represented the prevailing opinion of the day. Secondly, it removes them from visibility so that what they represented is hidden and we do not want to hide what happened. We need to remember it as an example of what should not be done.
It also assumes that no one today would agree with the positions held by Macdonald and Ryerson which is not the case. The abuses of residential schools has been known for ages but ignored. It is only with finding the hidden bodies that we get upset about and our Indigenous citizens are still treated as untermenschen to this day. If we were serious about improving things then the government would have begun to implement the recommendations from the Truth and Reconciliation Report but they have not.
Trudeau said a few years ago that he would rectify the drinking water on reserves and end the boil water advisories. Many reserves still lack proper drinking water. I saw a young Indigenous child interviewed on the news from one of the vigils held on Canada Day. He said if Canada can spend millions putting oil pipelines through reserves, why can they not put a pipeline to a reserve with clean drinking water? Out of the mouths of babes!.
Stopped in traffic for a moment I noticed we were sitting beside a Church Office. The signage pointed out this was an Office and not the place of Worship, which was a building at another address. It was the word “worship” that stuck with me.
It is not the matter of believing or not believing in a God, nor the benefits that accrue from gathering in a group and engaging in rituals to mark births and deaths and seasonal change, and listen to someone telling us to try to be good human beings.
It was the word “Worship” that struck a chord. What a strange anachronistic idea that we should “Worship” anything or anybody or any deity, especially an imagined alpha male in the sky, and his human proxies.
I suppose I am paying attention to this because a half dozen Catholic Churches on or near Reserves have been torched this month. And that one word gives the game away. Worship. It is a word of power, of certainty, and of the threat of punishment if not followed. It would be what tribal leaders expected, medieval kings, potentates, dictators, autocrats…unwavering allegiance and ritualistic methods of attesting to unlimited devotion, as well as punishment for any deviation.
And clearly any human organization that demands that level of devotion, kneeling and worshipping, saying the right words, is a cult within which, at least from time to time, terrible abuses will occur.
As bad an idea as it was to develop residential schools for aboriginal children, it was worse to hand management of these schools over to the Catholic Church. But then, at the time, it would have seemed natural, and we were only in the beginning of a journey to separate church and state.
But here we are in the seventh inning of evolution, of developing a method of governance that is inclusive, transparent, and fair to all, and a method of human governance and education that will avert, avoid, deny those human instincts that once may have had survival value but no longer do.
So let us have truth and reconciliation. Let us think hard on the mistakes of the past. But let us also celebrate how far we have come in the, perhaps impossible, pursuit of ways and means of human governance that will be, someday, inclusive, transparent, fair to all, and will also let us, collectively, save the planet.
If involuntary committal and treatment works when applied properly, what happens when it is not used appropriately – disaster. My friends at the Treatment Advocacy Center in the US call those instances preventable tragedies and there are many examples of those. To my mind, Vince Li is the most striking.
Mr Li was psychotic and untreated when, on a Greyhound Bus in Manitoba, he attacked his seatmate, killed him and almost decapitated him. A few years prior to this horrendous event, police in Toronto picked him up wandering along the 12 lane highway 401 that runs across the north end of the city on its route from the Detroit/Windsor border to the Ontario/Quebec border. Police, recognizing his fragile mental state, took him to the nearest hospital.
The hospital kept him for a few days and then discharged him back into the community with no follow up which, unfortunately, is not unusual. He continued to get worse until the unfortunate incident on the bus. Despite the enormous outcry from the community howling for blood, he was found not criminally responsible (NCR) and sentenced to a secure forensic psychiatric facility. The public should not have been angry about the NCR but rather about his being ignored by medicine and society until he decompensated to the point he murdered.
Over time and with proper treatment involving the drugs that the anti-psychiatry adherents vilify, he got better to the point where he could go out into the community for short supervised periods, move to a half way house and to an unconditional discharge. The part I do not agree with is the unconditional discharge which means that he does not report to anyone. Given his history, he might regress to psychosis but having him monitored would prevent that. So far, all has been well.
There are many family members killed by their psychotic children who could not get appropriate psychiatric care until after they killed, received not criminally responsible verdicts from the court and were provided with treatment in forensic facilities as a result. Over the years, I’ve written about a number of these events and once had the opportunity to meet someone who had killed both his parents. He was a very polite, quiet, sane young man.
The situation in some instances is so bad that parents live in fear of their psychotic kids, keep their bedroom doors locked at night and have a knife or some other defensive weapon handy.
One other aspect of involuntary committal is Community Treatment Orders (CTO) or Assertive Community Treatment (ACT). These order enable someone to live in the community provided they comply with their treatment. If they don’t, they get hauled back to hospital. One anecdotal bit of evidence can be found in a court challenge to CTO’s by an anti-psychiatry group in Toronto called the Empowerment Council.
Their witness as to the harms of CTO’s actually provided evidence of their effectiveness. Amy Ness had, prior to being put on a CTO, been involuntarily committed for showing violent behaviour in 2004. In 2007, while hospitalized, Ms. Ness kicked her mother in the back and hit her repeatedly. Then, in 2009, Ms. Ness grabbed a large kitchen knife and marched upstairs toward her mother after discovering a magazine about schizophrenia. In another incident, Ms. Ness kicked and punched the emergency department psychiatrist. By the time she was given a CTO in 2009, she had five hospitalizations.
Since then, while on a CTO, the judge pointed out, she takes her medication and sees her case worker on a regular basis. She has not been hospitalized, she maintains her housing and she works as a volunteer, has a job and takes courses. She does think, however, that the CTO is an attack on her personal dignity. Needless to say, they lost their court challenge.
The best one-liner on the topic (and modern society likes one-liners) was given by Cook County Sheriff Tom Dart on the 60 Minutes episode “untreated mental illness an imminent danger?”. Chicago’s Cook County jail is one of the largest institutions in North America housing the mentally ill. Sheriff Dart said “the irony is so deep, you have a society that finds it wrong to have people warehoused in state mental institutions but those very same people were OK if we warehouse them in jail. You’ve got to be kidding me!”
Is it really better to have untreated sick people in jail or homeless in place of actually treating them and helping them to get better? That is really what it comes down to.
For the final word, I’d like to quote Jude Mersereau, author of What’s So Funny? The Autobiography of a Professional Schizophrenian, Artist, Singer, and Public Speaker.
As a lifetime Schizophrenian I have learned to weigh the options of compliance/mental immaturity and their binary results, I have always been able to sign myself into Hospital. Mind you, some of those hospitalizations had been revised to an involuntary stay by my Psychiatrist within 72 hours. I have gleaned the importance of medication, also honesty with myself and the professionals. We all need to realize that it takes years to become ill, and therefore a comparable time to get well. First Hell, then Well. So I take my medication, and shut up if my day is not perfection.(most days) In Canada we have the best treatments, meds, follow-up, intervention and family support and we still can choose to live as a street-ranter with raggedy clothing and, God forbid ,jailtime for acting out instead of “going in”
We don’t need to re-traumatize the families of the victims of Paul Bernardo. Nor do we need long discussions of “behaviour while incarcerated”, “taking responsibility”, “remorse”, “change”, “finding Jesus”, “redemption”, “participation in programs.”
Here are the only two questions that need be asked:
1. Given the opportunity, is Paul Bernardo likely to re-offend?
THE ANSWER IS YES.
2. Short of high security incarceration, do we have any tools that would prevent Paul Bernardo from re-offending?
THE ANSWER IS NO.
Monday back to involuntary committal and treatment Part 3
There is an old saying in the field of mental illness treatment that our society allows people to die with their rights intact. If a person’s brain is so ill that they do not recognize they are ill and refuse treatment, we allow them to wander the streets in all temperatures, pan handle, live in cardboard boxes and revolve through jails for petty crimes. Many die years before they should.
We don’t do that with the elderly suffering from Alzheimer’s. We do whatever we can to make sure they live in secure settings where they are cared for. Alzheimer’s patients usually do not recognize they are ill, often refuse residential care, and like to wander the streets. We go to any length to get them help and into a secure living arrangement. Most of us would make every attempt possible to prevent someone from committing suicide if we came upon them planning to jump off a bridge. Most of us do not say they have the civil right to kill themselves. We try to prevent it and to get them help.
But we don’t do any of that with the young mentally ill. Many say that they have the right to be who they are. We must protect their civil rights from the interfering do-gooders and psychiatrists who want to treat them. If we are consistent, we should let the demented elderly and the potential suicides fare for themselves in the same way.
Voluntary treatment is always preferable. No one likes to be forced and I have no doubt that doctors do not like having to force someone but there are times when it is necessary for the benefit of the person and their families. And despite what those opposed often say, it does not mean solitary confinement and throwing away the key.
Involuntary patients have rights and those using that option have obligations they must comply with like time restraints, review mechanisms by an independent board while the patient (in Ontario at least) has the right to appeal and have a lawyer. Ontario has an independent psychiatric patient advocate to help.
Last week I mentioned Erin Hawkes (now Erin Hawkes-Emiru) who has written what the National Post headlined “Forced Medication Saved My Life”. Erin had been hospitalized and treated involuntarily over a dozen times until they found an anti-psychotic that helped her. She managed to complete her masters in neuroscience, works as a peer support specialist in Vancouver, has written two books which I’ve published – When Quietness Came: A Neuroscienctist’s Personal Journey with Schizophrenia and When Neurons Tell Stories A Layman’s Guide to the Nruroscience of Mental Illness and Health.
Erin was recognized with the “Courage to Come Back” award in 2019, is married and has a young daughter. She is often invited to give lectures to health professionals about mental illness in Vancouver. Not bad for someone dragged kicking and screaming to the hospital by police and paramedics!
The late Dr Carolyn Dobbins penned What a Life Can Be: One therapist’s Take on Schizo-Affective Disorder. She too was hospitalized involuntarily and, after one such bout, was discharged in time to defend her PhD thesis in Psychology at Vanderbilt. Carolyn spent over 12 years as a director of an addiction treatment facility in Branson, Mo and then had a private practice in Knoxville. Carolyn’s book is helping countless people and has been very favourably received in the media including a blog associated with the Washington Post.
Sandra Yuen MacKay is an accomplished artist living in Vancouver who was first hospitalized as a teen when her parents called for help. Of her first night as an involuntary detainee (patient), Sandra states “I fell asleep without tears for the first time in a long while. I felt protected from peering eyes that I had experienced previously.” Not quite the horrific experience that the anti-psychiatry folks would have you believe. Sandra’s book My Schizophrenic Life the Road to Recovery From Mental Illness was described as “remarkably compelling” and compared to Kay Redfield Jamison’s book on bipolar, An Unquiet Mind.
Sandra too has been awarded with the Courage to Come Back honour by Vancouver Coastal Health and was one of five chosen as a Face of Mental Illness in Canada. At one point, Sandra’s picture graced the posters on “recovery is possible” on the back of municipal buses in a city in BC. In 2012, she was awarded with the Queen Elizabeth II’s Diamond Jubilee Medal. So much for the negative effects of involuntary committal.
Sakeenah Francis described her life as going from Homecoming queen to Homelessness because of schizophrenia. She was married with a young child but became homeless because of her illness and found herself turned away from a shelter so she climbed onto a freight train to escape. She was arrested. Turned out in court that she and the judge knew each other from college and so did the social worker who visited her in her cell.
Probably because of that connection, the social worker realized she was ill and had Sakeenah moved to a psychiatric hospital. In jail, she was so psychotic that she wound up getting into a fight with another women in for murder. That diversion to hospital saved her from a life in and out of jail. Sakeenah became well enough from her treatment to write a book about her experiences with her daughter. Sakeenah described events from her perspective while her daughter Anika described what it was like for her during those years. Sakeenah has been very active in the Cleveland chapter of NAMI and mother and daughter both addressed the 60th Annual Conference of the Academy of Child and Adolescent Psychiatry in Orlando.
The final words go to Jude Mersereau who wrote What’s So Funny An Autobiography of a Professional Schizophrenian. Artist, Public Speaker and Singer. Jude has always gone into hospital voluntarily but once, when in, was declared incompetent and put on a hold. Her comment is that “there is so much to do in life, you should just take your meds and shut up”. When I’ve lost control, those around me must act on my behalf and have me hospitalized. That is the humanitarian thing to do, she told me.
The examples above are people who are exceptional and not always indicative of all people with schizophrenia. The disease (and yes it is a disease) impacts people differently. Some have worse cases than others but, regardless of the severity, involuntary committal when it is required can be helpful.
On June 10, WHO held an international webinar to announce its new series of publications and initiative on community mental health services described as
“Promoting person-centred and rights-based approaches (is) a set of publications that provides information and support to all stakeholders who wish to develop or transform their mental health system and services to align with international human rights standards including the UN Convention on the Rights of Persons with Disabilities.”
This may sound innocuous but it is anything but. It is an initiative devoid of scientific basis that joins with the UN Convention on the Rights of Persons with Disabilities (CRPD) that dictates that governments who sign must agree to eliminate involuntary hospitalization and treatment and the defence of not criminally responsible (Article 12). It carries with it the power and influence of two supposedly prestigious worldwide organizations that will likely derail any efforts to improve services for the mentally ill and particularly those whose illnesses prevents them from understanding that they are ill.
Of the CRPD, the British medical journal, the Lancet, wrote that:
“Article 12 of the CRPD threatens to undermine critical rights for persons with mental disabilities, including the enjoyment of the highest attainable standard of health, access to justice, the right to liberty, and the right to life. Stigma and discrimination might also increase.” (Lancet Psychiatry Vol 2, Issue 9 Sept 1, 2015 Reversing Hard Won Victories in the name of Human Rights).
Removing not criminally responsible will mean that instead of people being sent to hospital for treatment if they committed an offence while incapable, the UN requires that they be sent to prison untreated. Back to the Dark Ages. As Lancet Psychiatry points out, these dictates are not consistent with best medical practices for these ailments and came about because of the total lack of clinical experience among those who framed these rules and their limited consultation with users.
As it turned out, many of the people involved with the UN are Mad in America advocates. I’ve actually written about all of this and carefully refuted most of what they claim about serious mental illness and psychiatry in my new book Anti-Psychiatry and the UN Assault on the Mentally Ill.
I did attend the webinar put on by WHO but lasted for less than an hour – long enough to get the link to all their publications and be depressed by what I heard. A friend from Families for Addiction Recovery e-mailed me that “I watched the whole thing in horror. Asked several questions that did not get answered”.
The moderator was Sir Norman Lamb, a UK politician, who announced that there is presently too much medical focus in mental health and not enough social causes. WHO, he said, is taking a rights approach rather than a medical approach. This, he said, will give people a chance to get well. Next up was Olga Runciman from Denmark. Dr Runciman is a psychologist who told the listeners (6700 on Zoom and others on yutube live) that she loves her voices.
She explained that she was diagnosed with schizophrenia that resulted from school bullying, sexual abuse from childhood, and an adult rape. The one time she was hospitalized, she felt as if she was being bullied, sexually abused and raped all over again by the psychiatrists and hospital staff. Dr Runciman is involved with the Hearing Voices organization, practices Open Dialogue and writes for Mad in America. None of that is evidence based.
At this point, I left the webinar and started looking at the documents they produced. Here is the link to them and you can download all their publications. What is evident in reviewing these documents is the lack of solid scientific evidence (in my opinion anyway) and people I recognize from Mad in America – some of whom I’ve argued with on social media. Notable is Open Dialogue pushed by Robert Whitaker from Mad in America for which there is almost no evidence of its benefit. I’ve written about them before and even the proponents who developed the program admit that more evidence is needed. Open Dialogue treats those with first episode psychosis where roughly 1/3 have only one episode anyway. In one of their studies, psychotropic medications were used in 29% of subjects.
Another big focus is the Soteria Project first developed by Loren Mosher in the 1970’s after he visited RD Laing. Soteria is “based on a concept of schizophrenia as an existential crisis to be resolved at a personal and interpersonal level. Disease models and antipsychotic medications were considered impediments to the creative resolution of a psychotic episode, although it was acknowledged that they were sometimes necessary for management.”
I didn’t cover Soteria in my book because I did not realize it was around much anymore but most of the modalities espoused by the WHO, I have refuted referencing solid scientific work. But I do think their are lessons we can learn from all this to devise better advocacy strategies to counter this unscientific silliness and work towards improvements in care for the mentally ill.
In my humble opinion, the problem is that despite all the advances in science, we are becoming increasingly anti-science. The proof of that is the huge growth in alternative medicine and the reactions we are seeing to Covid-19 lockdown strategies, masking and opposition to vaccinations. I’ve had people tell me that they will not get vaccinated and one person (with a university education) caledl me to see how I was after I got my first shot. He told me that the vaccinations are causing increases in Covid and increased deaths.
The arguments that I do not have to wear a mask because it is my civil right not to have to wear one is selfish and dangerous. According to Tim Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, reliance upon civil liberties means lack of science knowledge. And the WHO and the UN focus on civil liberties to the exclusion of science. Caulfield is the host of a TV series seen in 60 countries called A User’s Guide to Cheating Death and the author of Is Gwyneth Paltrow Wrong About Everything and Relax Dammit!: A User’s Guide to the Age of Anxiety which looks at how misinformation and science affect daily decisions.
He made that comment in a zoom meeting he gave on misinformation in Covid that I attended. It is possible to successfully challenge these beliefs, he said, but not the way most of us do it. Citing scientific studies just causes people’s eyes to glaze over. The better method is using narrative because narrative is what the other side uses so successfully.
Narratives like those that Olga Runciman used at the webinar are tremendously emotive. Here she was a little girl bullied at school by her classmates, sexually abused by someone (she doesn’t say) and then raped later in life invokes compassion. She then develops hearing voices (by itself not a symptom of schizophrenia but evocative) and when she gets to a psych hospital, her experiences force her to relive all her earlier traumas. A personal anecdote with no proof of anything but it creates sympathy.
There is no reason we can’t use personal anecdotes like those to demonstrate our agenda. In fact, one of my authors did just that. Erin Hawkes, who wrote When Quietness Came A Neuroscientist’s Personal Journey with Schizophrenia, did do that.
Erin was so delusional that she had about 14 different hospitalizations involving police and/or paramedics dragging her into ambulances for transport to Hospital. When an anti-psychotic was finally found that quelled those delusions, she was able to get on with life and write that book, get married, have a child and write a second book that has just come out. Her article appeared in the National Post called Forced Medication Saved My Life. As I recall, she was viciously attacked for that on social media but her story did resonate with a lot of people.
Most of us can give good examples of the changes we’ve seen in our relatives when they start and stay on medication and that is far more compelling than quoting studies. Because people will likely be suspicious, we do need to back up those anecdotes with sound science which is not something the anti-psychiatry people can do. Without wishing to sound promotional, Anti-Psychiatry and the UN Assault on the Mentally Ill will do that for you. Amazon in the US has it on special at $12.92 Amazon Canada has it on for $8.60 with free Prime delivery the Indigo chain in Canada has it for $8.69 It is also available in e-books in various platforms.
We need to bear in mind and to make known to those who oppose involuntary committal and treatment that “The opposition to it betrays:
a “profound misunderstanding of the principle of civil liberties. Medication can free victims from their illness — free them from the Bastille of their psychosis — and restore their dignity, their free will and the meaningful exercise of their liberties.“
This was said by civil libertarian Herschel Hardin in 1993 writing in the Vancouver Sun. The late DJ Jaffe considered this to be the best article written on the topic and he reprinted the entire article on his website. Hardin was a member of the Civil Liberties Association and of Amnesty International for many years.