Category Archives: Right to treatment

Ontario’s Flawed Mental Health System and the Failure of the Current Provincial Government

By Marvin Ross

stone of madness

I recently came across an excellent assessment of the very bad mental health system in Ontario that prefers to have people receive services in the forensic stream rather than before they get to that point. The assessment was not published but was obtained under Freedom of Information.

That led me to write this on Huffington Post – Ontario Has Failed to Provide Adequate Resources for Mental Illness. 

After that appeared, the Hamilton Spectator did a feature on a young man named Ross Biancale with the head I’ve already written his obituary: Mom struggles to save son from himself. This sad but true recounting of what it takes to get someone service in Ontario illustrated all the points that I made in my Huffington Post blog. Below is my explanation for this mess.

The reason that Ross Biancale and thousands like him are falling through the cracks of the mental health system (the Spectator, January 23) is easily explained and easily fixed. They have not been fixed because the Liberal government has no interest in doing so.

Justice Richard D Schneider ran the Toronto Mental Health Court for years and then completed a report for the Department of Justice called The Mentally Ill: How They Became Enmeshed in the Criminal Justice System and How We Might Get Them Out in 2015. That report only saw light of day because of a CBC Freedom of Information request.

Justice Schneider points out that the main fault is the Ontario Mental Health Act and the conditions required for an involuntary committal to hospital. Under the current legislation, someone who is exhibiting all the signs of illness, listening to the voices of Martians in his head while denying he is ill, cannot be hospitalized without consent. Neither the police nor the Justice of the Peace will help hospitalize that person if they do not believe there is “clear evidence that he is dangerous to himself or others”. And, even if he is admitted, he is “discharged before he is stable” and “his condition deteriorates”.

Justice Schneider said “if the individual is not seen as dangerous to himself or others he is free to roam the streets ‘madder than a hatter’” And, in many cases, the person will come into conflict with the law and wind up in the vastly more expensive forensic psychiatric system.

The 1967 Ontario Mental Health Act allowed for someone to be admitted to hospital involuntarily if they were suffering from a mental disorder severe enough to warrant treatment in hospital for their own or others safety and they could be held for one month. That was changed in 1978 thanks to the civil libertarians to involuntary treatment only if the person had threatened or attempted to do harm to himself or others. The time held was lowered to 14 days.

Further, the 1967 Act considered that hospitalization meant treatment and people being held were treated. That changed in 1978 and someone could be held involuntarily but they did not have to agree to treatment.

Attempts have been made to change the Mental Health Act in Ontario and that was one of the recommendations of the 2008 all party Select Committee on Mental Health and Addictions. Recommendation 21 in that report states that the Ontario government should set up a task force within one year to “investigate and propose changes to Ontario’s mental health legislation and

policy pertaining to involuntary admission and treatment.”

That was 2008 and this is 2018 and the Liberal government still has not acted.

The other barrier to effective treatment mentioned in the Spectator article is our privacy legislation. If a person is over 18, they are an adult even if they live with their parents and are supported by them. Health care providers cannot talk to family without the permission of the ill person and, if they are paranoid, they may not grant permission.

The Select Committee also decided that the government should change the privacy legislation in recommendation 22. “The changes”, they said, “should ensure that family members and caregivers providing support to, and often living with, an individual with a mental illness or addiction have access to the personal health information necessary to provide that support, to prevent the further deterioration in the health of that individual, and to minimize the risk of serious psychological or physical harm.”

The 2013 Mental Health Commission of Canada report on caregivers made similar recommendations but, again, this is 2018 and Ontario has still done nothing.

These are issues that those of us with an interest in improved care for the mentally ill need to ask the candidates running in the upcoming provincial election.

 

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How to Achieve Medication Compliance

By Dr David Laing Dawson

Anosognosia is an unwieldy word meaning lack of insight, or, literally in translation, `without- disease- knowledge`.  In the case of some brain injuries or stroke the brain may become quite specifically unaware of what is missing. The part of the brain that would perceive this is damaged. With mental illness, schizophrenia, bipolar, the apparent lack of insight  or denial of obvious impairment or implausible grandiosity may be more nuanced and variable. It may be part defensive in nature; it may be more a denial of the consequences imagined; it may be more about the power relationship at hand. Some of it may be merely human, the unwillingness to give up a longstanding belief, whether that be of the second coming,  CIA surveillance and persecution, or of being chosen, special, destined for greatness.  Some of it may be a distorted form of the normally complex parent – adult child relationship.

But almost every family with a severely mentally ill member must deal with, at least once, that time when the ill member claims to be fine when obviously not, and refuses to take medication or go for an appointment to the doctor.

How to approach this. What options do you have. Below is an outline for talks I have given on the subject:

Stage 1

  • Calm and slow
  • Non-threatening (posture, position (e.g. side by side), distance, tone, pace)
  • Aim for a negotiated reality. (not the acceptance of your reality)
  • i.e. He may not be willing to admit he is ill or delusional or needs medication but may be willing to agree that he is in trouble, anxious, not well, in pain, not sleeping, and that in the past the pills have helped with that. He may by his behavior be willing to take pills or come for an appointment as long as he doesn’t have to admit to need or illness.
  • Gently find out what he or she fears.
  • Gently find out what his objections are.
  • Allay these objections and seek a “negotiated reality”.
  • Stay away from labels, declarations, and you defining his reality.
  • Offer pill with glass of water without saying anything.

Stage 2

Family intervention, same tactics as above but with whole family or available members, or a specific family member with influence.

Stage 3

Ultimatums. (You can`t live here unless…..)

But before doing this you should assess the level of risk (provoking violence, and/or leaving and putting self at risk). Discuss in family plus with a professional. Must also assess realistically your tolerance for confrontation, anxiety, worry, guilt. And ultimatums are only effective if truly meant, if you are truly willing to carry through with the ultimatum. If the ultimatum works, do not reiterate it unnecessarily.

Stage 4.

Form 1, J.P., Court order, Police intervention.

Before doing this decide on desired outcome, assess odds of achieving this desired outcome as best as possible (i.e. is there a treatment that works? Will they keep him or her long enough? Does the trauma of this kind of intervention justify the long-term outcome?)

Having decided on desired outcome, use all resources to achieve this. Learn the wording of the Mental Health act to get desired outcome. Use this wording to your advantage. Find family mental health friendly lawyer. Discuss with the health professionals who will be receiving the family member.

Addendum to Belief Systems, Mad in America and Anti-psychiatry

By Dr David Laing Dawson and Marvin Ross

Reading the comments to this blog and others of ours, there is a lot of a-historic and naive thinking. Recently, someone posted my Huffington Post blog on Open Dialogue in Finland to the Spotlight on Mental Health group set up by the Boston Globe to foster discussion of their series on the sad state of mental illness treatment and care in Massachusetts. One person criticized it claiming that I had no right to comment because I have never been to Finland, and the Finnish psychiatrist I quoted had no right to be critical because he had never been to Lapland. This is part of what that person said:

That paper by Marvin Ross is written around totally wrong information:

1) Marvin Ross has never been to Lapland to check what he wrote; thus he does not know what he speaks about…

2) The psychiatrist whom he telephoned in Helsinki, i.e. some 800 km from Lapland, had never been either…How she knew any of that I do not know.

One person commented on this blog that 10 times as many people diagnosed with schizophrenia die in the first year post diagnosis than 100 years ago and that olanzapine has killed 200,000 people worldwide.

Taking data from a number of public sources, Dr. Dawson put these statistics together:

Some American Statistics

1880

Total population: 50,000,000

A total of 91,959 “insane persons” were identified, of which 41,083 were living at home, 40,942 were in “hospitals and asylums for the insane,” 9,302 were in almshouses, and only 397 were in jails. The total number of prisoners in all jails and prisons was 58,609, so that severely mentally ill inmates constituted only 0.7 percent of the population of jails and prisons.

Average Life expectancy for entire population: low 40’s for whites

Low 30’s for blacks

2016

2016 total population: 324,000,000

Average life expectancy: men 76, women 81 (lower than Canada and most of Europe, lower still for minority groups. Much of this improvement from 1880 by preventing childhood diseases.)

U. S. Prison population : 2,200,000 (2014)

Or 716 per 100,000 American citizens are in prison. (a seven fold increase from 1880)

Mentally ill in prison estimated/measured to be 30% to over 50%

So 700,000 to over one million mentally ill are incarcerated in US prisons.

Incarceration in jail reduces life expectancy by roughly a factor of 10 years for every 5 years incarcerated. (all inmates)

Estimates/measurements of homeless in the USA:  1.5 to 2 million.

Estimates of homeless mentally ill range from 30% to over 50%.

So 500,000 to one million mentally ill are either homeless or living in shelters.

The homeless mentally ill are not receiving consistent psychiatric treatment. The incarcerated mentally ill may be receiving some limited treatment.

Adding this up:

One to two million mentally ill people are either homeless or  incarcerated in prison in the USA.

A high proportion of people with severe mental illness live in poverty.

Severe mental illness without treatment confers higher risks and co-morbidities for several serious diseases, such as cardio vascular disease. People with severe mental illness have a much higher risk of cigarette smoking and poor diet.

Untreated depression, bipolar disorder, and schizophrenia confer a much higher risk of suicide.

Homelessness and incarceration in and of itself reduces life expectancy by a considerable number of years. Neither of these groups is consistently receiving psychiatric treatment.

Psychiatric drugs do have side effects. (as do all pharmaceuticals) In a good outpatient or inpatient facility these can be monitored and treatment adjusted in partnership with patients.

But the real causes of contemporary poor life expectancy of the seriously mentally ill can be found in:

  • The illness itself untreated
  • Reduction and closing of hospitals.
  • Incarceration in jails and prisons
  • Poor or no housing. Homelessness
  • Poverty
  • Poor diet. Illicit drug use. Smoking.
  • Stigma leading to isolation and victimization
  • Poor, inadequate, or limited health care
  • Absence of good consistent psychiatric treatment.

And the overall cost of not providing good early consistent psychiatric treatment in both inpatient and outpatient facilities is calculated in the following article:

http://www.usatoday.com/story/news/nation/2014/05/12/mental-health-system-crisis/7746535/

A Subjective Unscientific Analysis of Anti-Psychiatry Advocates

By Marvin Ross

Many of my Huffington Post Blogs attract some very nasty comments from the various anti-psychiatry adherents. The same applies to the blogs by my colleague Susan Inman and we get some on this blog. The Boston Globe award winning Spotlight Team featured in the film Spotlight, just did a series of articles on the sad state of mental health care in Massachusetts. Wanting to foster dialogue, they set up a Facebook Page for comments. And did they ever get comments!

I’ve been looking at more than my fair share of these comments over the years but decided to try to categorize them. So here goes.

1. I was badly treated, mistreated, misdiagnosed therefore all of psychiatry is evil. In some cases, this alleged mistreatment occurred over 50 years ago. I do believe that this happened in most cases and it should not have happened but it did. Personally, I’ve run into (or family members have) some very incompetent and inept treatment by doctors and/or hospitals. This has occurred in inpatient stays, visits to doctors or in emergency rooms. And some of these misadventures have been serious but I do not spend my time denouncing all hospitals, all doctors or all Emergency Rooms. What I have done is to complain to the appropriate authorities. And most of the time I’m successful.

As my English mom used to say, “don’t throw the baby out with the bathwater”

  2. The other very common cry is that I got help and recovered therefore everyone can recover and if they can’t, it is because the docs are bad or are trying to keep people sick to make money and peddle drugs. I’m sure there is an error term in logic where you extrapolate your particular situation to everyone. That is what these critics are doing. It is like saying I survived prostate cancer which has a 5 year survival of 98.8% so that someone with pancreatic cancer can too. Pancreatic cancer only  has a 4% 5 year survival rate. It is not the same nor is say mild anxiety comparable to treatment resistant schizophrenia. Stop mixing apples and oranges.

3. Involuntary treatment for those who are so sick that they pose a danger to themselves, others, or will deteriorate further without involuntary committal means that the state will lock up, drug and keep everyone indefinitely. None of these fears are true so learn what is entailed and get over it. And when I post a video or an article by someone like Erin Hawkes who went through about a dozen involuntary treatments till a pharmaceutical agent was found that removed her delusions, stop insulting her as some have done by calling her a victim and that she is suffering from Stockholm Syndrome.

How will you learn if you refuse to listen to other opinions?

What I suspect that these involuntary opponents do not understand is that people are not locked up without just cause or forever. There are safeguards in place to ensure regular reviews and appeals. In Ontario a few years ago, a group of so called psychiatric survivors challenged the constitutionality of community treatment orders and supplied the courts with affidavits from people who found them to be bad. This is what I wrote about that in the Huffington Post:

Justice Belobaba only had to look at the affidavit that the plaintiffs filed as part of their attack on CTOs to get an idea of how well they can work. 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.

Herschel Hardin, a civil libertarian once wrote that:

“The opposition to involuntary committal and treatment betrays a profound misunderstanding of the principle of civil liberties. Medication can free victims from their illness – free them from the Bastille of their psychoses – and restore their dignity, their free will and the meaningful exercise of their liberties.”

A psychiatrist I know who is a libertarian (someone who believes that people should be allowed to do and say what they want without any interference from the government) told me that when your brain is immersed in psychoses, you are not capable of doing or saying what you want. Therefore, he was fully supportive of involuntary treatment so that people could get to the position where they had the capacity to do what they want.

4. And then we come to what Dr Joe Schwarcz on his radio show, Dr Joe, calls scientific illiteracy. He used that in his July 10 interview with my colleague, Dr Terry Polevoy, in a discussion on EM Power + and the conviction of the Stephans for failing to provide the necessities of life for their child who died of bacterial meningitis. They refused all conventional medical care, gave him vitamins, herbal products and echinacea till the poor little toddler stopped breathing.

There was a case of scientific illiteracy in that the parents are totally opposed to vaccinations and work for a  company that encourages people with mental illnesses to go off meds in favour of their proprietary vitamins. They had no idea why they were convicted, lashed out at the jury who convicted them and then, at their sentencing hearing, the wife shocked even her own lawyer when she told the court that the Crown had used a phony autopsy report as evidence.

Other examples are that anti-depressants cause violence and suicide. Violence possibly in those under 24 according to a large Swedish study but not in adults. However, the authors state that these findings need validation. There is no definitive proof of this and no evidence of increased violence in adults.

As for anti-depressants causing suicide, a warning that this might be a concern was posted on the labels. Doctors were advised to be cautious when prescribing these for depressed young people.Consequently, this resulted in an increase in suicide attempts.

“Evidence now shows that antidepressant prescription rates dropped precipitously beginning with the public health advisory in March 2004, which preceded the black box warning in October 2004. Since the initial public health advisory, antidepressant prescriptions for children and adolescents decreased, with a consequent increase (14%) in incidence of suicide in these populations.”

On my to-read list is Ordinarily Well The Case for Antidepressants by psychiatrist Peter D Kramer. Kramer is the author of Listening to Prozac and, in this new book, he continues with proof that antidepressants do work and are not simply placebos. Not only do they work, but they are life savers.

In the New York Times review by Scott Stossel, the reviewer points out that when Kramer first began visiting psychiatric wards in the 1970’s, they were filled with people suffering what was then known as “end-state depression”. These were depressed patients in what appeared to be psychotic catatonic states.

Patients like that have not been seen for decades which he attributes to the aggressive use of antidepressants.

And, lest we forget, there is also the common view that the chronicity of psychiatric disorders are caused by the drugs that doctors force on their patients. People love to quote the work of Martin Harrow in Chicago but I suspect that many have not actually read his studies. Some people, he found,  did better after going off anti-psychotics over time than those who continued with their use but that is not surprising. It has always been known that some people improve while others have chronic problems and still others are not able to be helped with anything.

What they do not realize is that in Harrow’s study, 79 per cent and 64 per cent of the patients were on medication at 10- and 15-year follow ups. And that Harrow points out that not all schizophrenia patients are alike and that one treatment fits all is “not consonant with the current data or with clinical experience.” His data suggests that there are unique differences in those who can go off medications compared to those who cannot. And he points out that it is not possible to predict who may be able to go off medication and those who need the long term treatment. Intensified research is needed.

So stop with the reference to Harrow that no one needs meds. And stop also with promoting Open Dialogue when, first, it has never been empirically validated and second, many of their patients are on medication.

5. Regrettably, many of these people lack any civility whatsoever. People are entitled to offer their comments but they should not do so anonymously. And they should show some respect for those who have different views. I’m told that some have been banned from the Spotlight Facebook page and I’ve just banned one anonymous person who posts here for his/her personal attacks. I mentioned above that Erin has been called a willing victim and one who suffers with the Stockholm syndrome for her video and her article. Refute the points she makes but leave the insults aside.

And, one post that I removed from the After Her Brain Broke page on Susan Inman in response to he video What Families Need From the Mental Health System claimed that Susan keeps her daughter locked up and ill and that she likely suffers from Munchausen by proxy.

 

Planning Mental Health Services Rationally

By Dr David Laing Dawson

Over the years I have been several times involved in planning mental health services, sometimes in a general and wide sense, sometimes specific programs. In each case I usually ask, “How much money do we have to spend? What is the budget?” And usually there is no answer to this question. The game is not played that way. First the proposal to compete with other proposals and then, within a highly politicized process, the allocation of funds.

This means of course, that the words are being sold, promoted. Not the actual evidence based possibility of major effectiveness with consideration of budget. But rather the most pleasing, hopeful, expansive words of promise (with fewest political complications) are being sold and often funded. This may be a good way to fund an arts program, but for health, we really should turn to science.

If we say, instead, “We have 10 million dollars to spend to prevent suicide in a particular state or province; how should we spend it for best results?” then our thinking might be clarified for us. What do we actually know about suicide and suicide prevention? What do studies from various parts of the world show? Where are the high risk populations? Which ones can we actually target?

Then we might look at the large range of social and economic factors that comprise risk factors that indirectly, or at a distance, contribute to a high suicide rate, and pass on these. They are usually broad conditions that can be gradually improved, and should be gradually improved through political action and do require political will and good economic times. (housing, minimum wage, employment, social programs, education)

Then we could look at specific high-risk populations and figure how we could spend that 10 million effectively to measurably reduce the suicide rate.

Then we might notice that a very high risk group for completed suicide comprises people too-late identified as suffering from severe mental illness, recently discharged psychiatric patients, and especially those suffering from a severe and chronic mental illness who drop out of treatment and/or stop their medications.

And then we can ask if there is a way of spending that 10 million dollars to improve and repair the services offered this group of people. They are identifiable. They are at high risk. And it is possible with limited money to enhance the programs that serve them. Especially during visits to emergency, drop-in clinics, and family doctors, and then in the years following diagnosis and/or discharge from hospital.

Of course we need to improve the resilience and mental health of our children, if we can. But not as a means to reduce the suicide rate, but rather for overall success of our children as adults. And this means, not a suicide prevention program, but rather more money and support for the educational system and improvements in this system utilizing all we know about learning, nutrition, physical health, exercise, social growth, stress management, disability accommodation, ensuring each child has some success and a chance to belong.

When it comes to suicide then, we don’t need a “national strategy”. We need to continue to improve all our services and our lives, with improvements in our educational systems, income support and equality, a healthy economy and good jobs, improved general health care systems and easy access to same, addictions programs, income and social support for the elderly, affordable housing…… And we need to turn our attention to those people we know to be at especially high risk for suicide (sufferers of severe mental illness, recently discharged patients) and improve our services and access to services for these people.

 

 

 

 

The Sisters of Perpetual Determination

By Katherine Flannery Dering From her Blog Word From the Trenches

IMG_1303

Sunday after Sunday, year after year, our Mother drove the one hour ride from our home in White Plains to the Wingdale Psychiatric facility to visit my brother Paul and to prod the staff to take good care of him. Paul, the eighth child of our family of ten children, suffered his first psychotic break at 16 and for the next thirty two years, despite all treatment attempts, he never had more than a few moments of sanity. As our father sunk into a deeper and deeper depression, unwilling to face what had happened to his young pride and joy, Mother just gritted her teeth and did what had to be done. Dad died. Paul got sicker. But sun or snow, rainy or blustery day, Mother drove the two hour round trip and gave Paul his one day per week of almost normalcy. Picnics for sunny summer days, diner or pizza shop on bad days, an occasional excursion to a pool or bowling alley. Mother could recite every gas station, burger joint, antique shop, hardware store, exit, entrance, diner, motel, bank, putting range or ski equipment shop along the 50 mile route.

When Paul was 34, Mother died, very suddenly, of a burst aortic aneurism, and the ten of us “kids” were in shock. We stumbled through funeral preparations, copying what Mother had done for Dad. She had sung in the church choir for years, and her pals did a great job singing at her funeral mass. During the priest’s homily, he spoke repeatedly about what a determined mother she was in not only raising her ten children but also for ensuring that her mentally ill son was properly cared for. After Mother’s burial, the choir and at least 80 other friends and family members gathered at Mother’s house for a funeral luncheon.

At some point that afternoon, four or five of my sisters and I went for a walk around her neighborhood to escape the crowd of mourners who, fueled in part by a large quantity of bourbon and wine, had progressed from munching on catered chicken parmesan and crudités to singing show tunes around her baby grand piano. It was a beautiful, sunny fall day.  A short way down the block, realtors were holding an open house. Since we would have to sell Mother’s house, we decided to check it out. Recalling how the priest at Mother’s Mass had gone on and on about what a determined woman she was, we signed in as a group of nuns looking for a new home and called ourselves the Sisters of Perpetual Determination. It became our family joke. The next year, after I’d settled Mother’s will and distributed everyone’s share, my siblings gave me a plaque inscribed “To the executrix extraordinaire, with thanks, from The Sisters of Perpetual Determination.”

As the months and years went by after Mother’s death, we siblings took up the mantle of trying to look after our brother.  However, this was the age of the deinstitutionalization movement, and despite the lack of a suitable half-way facility to care for him, we were unable to prevent his release from the psychiatric facility. Without constant supervision and tweaking of his medications, he went steadily downhill. His schizophrenia was severe and persistent. He was unable to make it through the maze of “freedoms” he was given, and he cycled in and out of hospitals and group homes. We had always hoped we could keep him safe until some new treatment was discovered that would bring him back to us. But poor diet, constant smoking and general aimlessness caught up with him. Despite our efforts, he died six years ago at the age of 48.  We miss him still.

Current laws, meant to protect people from unjust confinement, now condemn many people with serious mental illness to a shadow life of delusions, confusion, and homelessness, horrible group homes and/or early death. Despite promising advancement in early intervention and new cognitive treatments, many with schizophrenia never really recover.  The care of a family member in this age of almost no long term mental health care puts a tremendous burden on people trying to keep their loved ones off the streets and out of jail.  In consideration of all these caregivers do, my sisters and brothers and I have decided to share our sisterhood name with all the other families of people suffering with serious mental illness.

To the Mothers, Fathers, Sisters and Brothers of Perpetual Determination, we salute you.  We have pledged our support for legislation like HR2646 and vow to fight for improved care for our loved ones.

picture:  to r back row: Pat, Charlotte, Sheila, Paul, Ilene; front row: John, Katherine, Julia, Grace, Monica.

For more information on HR2646 and a letter you can copy and paste and send to your representatives go to www.shotinthehead.com and click on the advocacy page.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To order my book, please go to Amazon.com

A Christmas Blog For the Families of the Mentally Ill

I Was A Person

By Marvin Ross, Katherine Flannery Dering and Ilene Flannery Wells

I was originally simply going to reblog Katherine’s wonderful blog called Christmas Past and Present but then, yesterday, I read Ilene’s poem about her brother on the eighth day of Christmas from the 12 Days of Christmas blog and found it so moving that I wanted to share it as well. But first a little digression.

Every couple of Saturdays, I drive to Toronto to have lunch with friends. My route takes me through the heart of downtown Toronto up Yonge St from the Gardiner Expressway. This past Saturday was the first cold day of the year and, of course, I pass numerous bodies in sleeping bags on the sidewalk. Some of our homeless and likely mentally ill citizens.

I also know from past experiences going into Toronto for meetings that had I gone to the next main street west of Yonge, Bay St and the financial capital of Canada, I would have seen the very same. On weekdays, I’ve seen bankers, stock brokers and others stepping over and around these people. Our treatment of the homeless and mentally ill is shameful in both Canada and the US.

I’m writing from Canada and Katherine and Ilene from the US but our advocacy is the same. Here they are:

Christmas Past and Present by Katherine Flannery Dering:

About five months after my family moved to Switzerland in 1959, Mother went into labor early, with what we thought would be her eighth child. After three weeks of complete bed rest, the surprise twin babies – eighth and ninth – were born Christmas Day.

How auspicious!  Paul was so beautiful, with his blond curls and long, lanky body!  Even his fingers were long and elegant.  Ilene, two pounds smaller than Paul, was tiny and had straight dark hair and intense dark eyes set into a little round face.  She looked like the Japanese dolls, friends had sent us from Occupied Japan a few years before.

The twins were baptized a few weeks later in a tiny, Medieval stone church in the nearby town of Versoix, each of them dressed in a piece of the Christening gown my father and the older seven children had been baptized in.  My older sister Sheila and I (first and second of the eventual ten) held them for the service, filling in for the official godparents, who were back in the States.

On Christmas mornings, for all the years that the twins were growing up, the ten of us kids (our tenth – and last – child, Julia, was born two years after the twins) woke before dawn. We waited at the top of the stairs in our pajamas, our dog Charlie whining and whimpering in the excitement, until Mother and Dad went downstairs and turned on the tree lights.  Once they gave us the go ahead, we all rushed down to the living room, big kids looking out for little kids, and opened our presents in a frenzy of ripping paper and squeals and barking and the beeping and clanking of new toys.

Someone put Christmas music on the record player.

O little town of Bethlehem/how still we see thee lie./Above thy deep and dreamless sleep/the silent stars go by.

 … Our one perfect day of the year.

After presents had been opened, we older girls helped Mother fix a big breakfast of bacon and eggs that we ate in the dining room.  The candles on the Advent wreath, changed out from their pink and lavender to red in honor of the day, blazed all morning.  There were too many of us to go to church together, so those who hadn’t been to Midnight Mass drifted off to Mass in twos and threes.

From noon on, Christmas changed over to the twins’ birthday. Following family birthday tradition, Ilene didn’t have to help with dishes or set the table, the usual girl chores.  Both she and Paul got to laze around in the living room and ask other people to bring them a soda or a glass of juice while they played with their new toys or watched some old movie on TV, which they got to choose.  At dinner, while Dad read the gospel from the Christmas Mass, Paul and Ilene got to relight the red candles on the Advent Wreath.  Mother carried in the roast beef with great ceremony and placed it in front of Dad, and the twins got their pick of the roast – they usually chose the ends, valuable mostly because there were only two of them – and they were served first. Our ten sequined, red felt Christmas stockings hung from the dining room fireplace mantle.  Above them, the little brass angels of the Swedish chimes, pushed by the rising heat of little candles, clanged against bells as they swung by.

Dessert was always the same – two layer-cakes in the shape of a Christmas tree, one white, one chocolate, both of them made from Betty Crocker mixes and decorated with green frosting and little globs of red, blue and yellow frosting made to look like Christmas tree ornaments.  After the dinner plates were cleared away, Sheila, Mary Grace or I would go out to the kitchen to light the candles on the cakes.  The twins would squirm and grin kitty-corner from each other at the long table.  When we gave the signal, Johnny or Patrick would turn off the lights and start the singing and we’d deliver the cakes and birthday presents by the light of all the candles.

Fast forward to today

The above is an excerpt from Shot in the Head, A Sister’s Memoir, a Brother’s Struggle, my memoir about my family, and more specifically about taking care of our brother, Paul.

all I want for christmas is hr2646-2

Little did we know back in 1966 when the five little kids posed for this picture – Charlotte, Monica, Paul, Ilene and Julia – how it would all turn out.  Our beautiful baby Paul grew into a handsome teenager, full of promise…

…until he succumbed to a psychotic episode at age 16. Christmas was never the same again for our family.  Despite frantic efforts to get him psychiatric care, Schizophrenia killed the brother we knew and left in his place a confused, delusional man, who had no more than a few scattered minutes of sanity ever again. And his situation worsened over the years, as most of our psychiatric facilities were closed and fewer and fewer facilities were available for the care of those most seriously ill.

Our system of care for people with serious mental illnesses in our country is simply not working.  4% of our population suffers from a serious mental illness, and many of them, like my brother Paul, never really recover, even if they stay on medication. Only about one third of people diagnosed with schizophrenia recover, a third cycle in and out, and a third never achieve any appreciable recovery. Many of these are homeless or in jail, due to the lack of appropriate care facilities and supportive housing.

The Twelve Days of Christmas – On The 8th Day of Christmas, My True Love Gave to Me – Eight Maids A-Milking…

Dedicated to the Flannery family and to all caregivers everywhere who have been subjected to this injustice and neglect of their loved ones who were left abandoned and had to learn to care for their beloved ones on their own.

By: Ilene Flannery Wells, Paul’s Twin Sister

Tall Paul, Pure of Heart
Was born on Christmas Day
The 8th child born to John and Mary Kay
The 9th child came just
15 minutes later!
Oh, what a Blessed day!

His bright Blue eyes
And winning smile
Made it easy for all
To love Tall Paul
Including his two
younger sisters

For his first 16 years
He graced our presence
With laughter and fun
And gregarious charm
Paul skated through life
Always pushing the edge
Until his Brain took a hit
From his gene pool and drugs

Schizophrenia they said
One doctor after another
He’ll never recover
You must think of the others
So off Paul went
To Rockland State Hospital
And then Wingdale where
Tall Paul, Pure of Heart
Was…

James Bond
Clint Eastwood
Dick Butkus
A King Fu Movie Star…
From Korea
Who made millions of dollars
Paul wrote to his mother
In a Mother’s Day card
A camera was Imbedded
In his head
Which had been shot off
By Dickie and Homer
And maybe there were others
I couldn’t keep track
The Last of the Mohegans also
Invaded his thoughts but
Perhaps that was due to the fact
Paul was scalped at 16

When Wingdale closed
Paul watched a different train
Go by each day and
Dreamed of hopping on
He took a few rides in his time
But that was on the Harlem line
These were chugging by
The sides of the Hudson River

For 20 years
Paul walked and paced the halls
Of crumbling Psychiatric wards
Not for lack of trying Paul was
No better and no worse
Than the day he became
A different Paul than the
Twin I Knew from birth

His life was so rough
But that was just the beginning
Upon his release
They said he was competent enough
To make his own decisions
Mary Kay and John
Were now years gone
So we siblings
Stepped In

For 9 more years
Paul struggled as did we
Our love wasn’t enough
We were one step behind
One bad decision after another
Made not by Paul or
His brothers and sisters
These decisions which inflicted Trauma
Were made by what is called
The Community Mental Health System

The numbers in prison, let alone homeless
Are so astoundingly large
That the prisons are now
Our new Asylums
A million sad souls getting
Kicked while they’re down
No treatment for you
Since you don’t know
You’re even around

Tall Paul, Pure of Heart
Didn’t know he was sick
But he was a lucky one
He never was homeless
Never even arrested
That’s now the norm but
Don’t get me wrong
There were no bed of roses

Group Homes
Adult Homes
Assisted Living Apartments
What Assistance? Are you kidding?
Foot fungus, lack of food
While the case workers looked on
Paul needed to learn
To live on his own
Paul “menaced” the public
And was picked up by police
Well, they were trying
To steal his kidneys after all
His lack of insight continued
It never abated
Even when cancer came
And took him away

That last year in the nursing home
So caring so warm
Was like a dream come true
Even though we knew
It wouldn’t last long
He was a person, the Governor,
A nickname he earned
A friend, and a brother again
Why did it take cancer to receive
The care he so richly deserved?

It’s been 7 years now and
The “system” is worse, not better
It is just so absurd
That the sickest among us
Get no treatment at all!

So on the 8th day of Christmas
Think of Tall Paul, Pure of Heart
The 8th child of Mary Kay and John
And remembered by his
Sisters and Brothers of
Perpetual Determination

Sheila
Katherine
John
Grace
Patrick
Charlotte
Monica
Ilene and
Julia

Reflections on the Death of an 11 Year Old Aboriginal Girl Who Was Allowed to Forgo Chemo

stone of madnessBy Dr David Laing Dawson

I can think of a few metaphors that aptly express why one shouldn’t blog about this subject: mine field, thin ice, bramble bush, angels fear to tread. But…

We decided many years ago that we, (and by “we” I mean our organized educated societies, our western countries ruled by civil law), should protect our children, even protect them from their own parents if necessary. Well, truthfully, it wasn’t that many years ago, just over a hundred, and it seems we decided we needed to protect our pets and our farm animals a full generation before deciding we also needed to protect our children. But we did decide we really shouldn’t allow child labour, or pretend that sex is consensual before age 14 then 16, or marry off unwilling teenage females, or cage and beat or starve our toddlers. We know we should not allow a 13 year old to fly an airplane because she wants to, or drive a car before age 16, and even then only with training and supervision.

We expect parents to take their children for adequate medical care, and if they are not doing this we intervene. If we find that a hyper religious Christian couple have caged their 10 year old in a rat-infested basement for two weeks as correction for lying, or taking the Lord’s name in vain, we intervene. We take the child away. It is not a process without complexity but we do act. We do not allow parents to refuse treatment for TB if their child suffers from this disease.

So why on earth do we allow a ten year old, or a 12 year old, to decide with her parents, to forgo life-saving cancer treatment? Why this incredibly deferential attitude toward primitive thought and quackery when it is coming from a person or persons of First Nation Heritage? We wouldn’t buy it from a Roma, a Seventh Day Adventist, a practitioner of Santeria, an Irish healer, a Celtic priest, a new-age diva. So what makes us so cautious, so generous with the fictions of the ancient healing practices of First Nations?

Now, don’t get me wrong. I’m not against ritual and faith and any kind of spiritual or psychic healing practices if they give comfort and hope and do not replace actual proven treatment when such treatment exists. Go ahead and burn the incense, do the cupping, chew the wheat grass, wear the garlic, swallow the echinacea, and acupressure to your heart’s content, but if a bacterial pneumonia is the problem, for God’s sake take the antibiotics as well.

I will try to answer my own question because if that were my child, or grandchild, Family and Child Services and the court would have, I’m sure, taken my child into temporary custody and ensured that she be treated.

I think it is the problem of lingering racism and guilt, the guilt being a response to our own history and perhaps lingering hints of racism. My and your ancestors certainly did not treat the First Nations people well. Even when our intentions were basically good, the solutions proved destructive: residential schools, Reserves. So we feel guilty, and angry. Guilty that we still have people living in our rich country in third world conditions. Suicide is endemic, alcoholism epidemic. Many of the young men are in prison, many of the young women disappear or die prematurely. The fire truck does not work; the water treatment system fails. Nepotism flourishes.

I had dinner with the chief of a Northern Ontario band many years ago. He was in a wheel chair having lost his legs on a rail road track in what is often called “an alcohol related accident”.  He was clever and wise and had something of a sardonic sense of humor.  For some reason I was curious about the apparent lack of curse words in his language, and asked about this. He smiled at me and said, “You must remember that the Indian had nothing to be angry about before the white man came.”

Well, I know that is not really true, and I know that they are no more likely to be in touch with, in harmony with, the mysteries of the universe, energies of the wind and rain, the forest animals, the living earth itself than I am (or at least David Suzuki). Though I am sure their ancestors were more in touch with night and day and rain and wind and birth and death, with drought and storm, as were mine living  in their sod huts, cooking over peat fires and herding their sheep through the rocky pastures of the Orkney Islands, unaware, I’m sure, of Galileo’s discoveries, or of Dr. John Snow  staunching the spread of Cholera in London.

No. They don’t have any special lock on the magic of the universe, the spirits of the animal kingdom, the nature of healing, the mysteries of the our cells and organs, of our mortality. They are merely human, like you and I. And Canadian. Living in the twenty first century, in centrally heated houses, with TV and the internet, driving cars, burning fossil fuels. And their children deserve the same protection as mine do from the superstitious beliefs of our ancestors.

Magic, Shamanism and Modern Science

stone of madnessBy Dr David Laing Dawson

This was in the news today:

“The judge deciding whether an aboriginal girl can forgo conventional cancer treatment for traditional healing questioned whether forcing chemotherapy would be “imposing our world view on First Nations.” ”

This child has an acute form of Leukemia that is known to be 100% fatal untreated, but, unlike most cancers, has a 90 to 95% chance of remission and cure if treated. That is the science of it. The western medical science.

The judge’s use of the term “world view” struck a cord with me, but rather than wading into this mine-field of misperception, mistrust, and down right denial of science, I will relate a story much closer to the reality of human behavior and human motivation.

Some years ago I was consulting in Northern Ontario when I found I had an appointment with an Ojibway medicine man in the town of Kenora. He was something of an itinerant medicine man, healer, shaman, traveling to reserves in Manitoba and Ontario as needed. He was a tall man, quite imposing, with dark eyes and a charismatic intensity. He introduced himself and told his story. He was scheduled (now “scheduled” is not quite the right word here, because it certainly was our Industrial Revolution that imposed scheduling) to perform, in the near future, a second try at exorcising a powerful and evil spirit that had invaded a woman’s body. He had performed one ceremony and failed, he explained. The beast was still within this woman and destroying her and making her behave in a psychotic manner. This invading spirit, this evil, was particularly pernicious (my word), and, once out of the suffering patient, was apt to invade an onlooker.

He invited me to attend the ceremony.

“But”, he said, “You should bring some holy water to protect yourself.” He said this with such conviction that I was quite prepared to visit the Catholic Church to ask the priest if I might borrow a little from the chalice.

We talked some more, and I explored and asked what I could about the nature of the ceremony and the woman’s symptoms, and I agreed to come when summoned. But as he got up to leave I was still puzzled by something. So I asked, hesitatingly, “But really, why would you want to have me at this ceremony?”

He looked at me and said, “You might bring some of those pills of yours.”

And then he left.

And I thought, a smart man, covering all his bases. Native spiritualism, Catholic magic, and Western Medicine. And also, I thought, a true reflection of where we really are: hankering for the magic world of the spirit, the certainty and comfort of religion, but relying on the wisdom of enlightenment and science. I would take some fast-acting anti-psychotic medication with me when called.