Category Archives: Schizophrenia

Guest Blog – Saved From Committing a Psychotic Murder

By Joseph Bowers

There was no one in this world I loved more than grandma when in my right mind so why did I try to kill her? By the time I turned 17 in 1964, I had become totally absorbed by psychotic delusional fantasies. I was living with my grandmother and she and my grandfather, who had died about ten months earlier, had raised me from the age of two. Also living with us was my Uncle Fred who was not home much.   

One evening shortly after my birthday, my brain became convinced that the devil had replaced my grandmother’s soul from her body with his own. He was doing this waiting for an opportunity to kill me. I don’t remember exactly who I believed I was: God or Jesus, a critical figure for good in the ongoing battle of good versus evil in any case.  

Alarmed as I was, my brain saw this as a great opportunity. I could kill my grandmother’s body whereupon the devil’s soul would be forced to vacate. At that point, my spirit friends would capture him and imprison him eternally. Without his leadership, the forces of evil would crumble and the battle of good versus evil would be over once and for all with good triumphant. I probably had a plan for restoring my grandmother’s body and reuniting body and soul. We would all live in peace happily ever after. 

Just after grandma went upstairs to bed that night, I took a single shot 16-gauge shotgun out of a closet, loaded it and started up the stairs toward her bedroom. As I reached the top of the stairs, looking in through her open bedroom door, I saw her kneeling by her bed praying. 

Confused, I hurried on down the hallway out of her line of sight. What was the devil doing kneeling in prayer? Surely, he had somehow become aware of what I was up to and was trying to fool me into thinking this was just my dear grandmother after all. 

Taking a deep breath. I went back down the hallway and entered her room. As she turned to me, I pressed the barrel of the shotgun against her chest and pulled the hammer back cocking the gun. At this point she reached out to me touching my arm and pleaded, “Joe don’t! You’ve never been mean to me!”  

Time seemed to stand still as I wrestled with my dilemma. Do I pull the trigger or not? 

I pointed the gun to the floor. With my thumb on the hammer, I pulled the trigger letting the hammer down gently harmlessly. Breaking the breach, I unloaded the gun, and we went downstairs to wait for Uncle Fred to come home. 

Nearly sixty years later, I still wonder what saved my grandmother that night. Was It the uncertainty caused by finding her in prayer? Did her reaching out and beseeching me somewhat reestablish our relationship and make it harder to believe her to be the devil? Did I have one of those brief lucid moments that sometimes come in the midst of psychosis? I just don’t know, but I’m thankful whatever it was. 

That night they took me to Middletown State Mental Hospital in lower New York State where I would stay for more than two months being treated for what they diagnosed as paranoid schizophrenia. 

At the hospital I received the best science-based treatment available in 1964. My family never got a bill. The state of New York paid for it. I was able to leave the hospital after about two and a half months reasonably stable. As a teenage boy from rural upstate New York and a family of limited financial resources, I didn’t realize how lucky I was to get this kind of treatment.  

There would be more than twenty years of struggling with recuring psychotic episodes. There would be more hospitalizations and a couple arrests. 

In time I was put on a medication that proved very effective without serious side effects, I’ve developed a solid support system of professionals, family and friends and I have learned effective coping skills. Working with a professional, my wife and I learned signs of impending illness which would alert us to take preventative action. I haven’t had a serious episode in more than thirty years now and have overall lived a reasonably normal and successful life. 

Never on any sort of disability insurance, I have held down many jobs. For two years I fought forest fires on a hotshot crew for the U.S.D.A. Forest Service, worked as a roughneck on oil rigs and retired from twenty-nine years helping produce low-cost electricity at a large power plant.  I’ve earned a B.S. degree from a major university and had a successful marriage. My wife and I have three grown children all healthy, doing well and contributing to society. 

I am truly one of the lucky ones. 

With the changes I’ve seen in mental health care in my lifetime, I can just imagine how things might go in this day and age. A teenage boy from the country and poorer parents developing serious mental illness would face a different scenario than what befell me in 1964. 

If he got a hospital bed at all, he would almost certainly be released way too soon and get little of the needed support on the outside. It’s not hard to imagine a life of homelessness on the streets in and out of jails and prisons. This happens all too often. 

The big paradox for me is that even as our ability to treat serious mental illness has increased a great deal in my lifetime, the likelihood that people will get the treatment that is available is much less.  

Joseph Bowers now lives in Colorado                

Financial and Housing Support for the Mentally Ill

By Marvin Ross

Poverty and homelessness are two hallmarks in the lives of the mentally ill in addition to what is often poor health care. The one thing that the Covid pandemic illustrated in Canada is the lack of a proper safety net for this group. The Canadian government acted swiftly to help support people who lost their jobs, small businesses and landlords as the result of the lockdown. The disabled have been ignored.

Ontario, where the monthly support for the disabled comes to the Dickensian amount of $1169 (barely enough to rent an apartment), managed to give some people all of $100 a month extra for four months. The Federal government promised an additional $600 one time grant but only to those who have a very hard to get disability certificate from the Canada Revenue Agency. That money has still not been allocated.

As a result, there is considerable talk of a guaranteed annual income for people to ensure that everyone can live above the poverty line. That is years in the future if ever. Spain was the only country to actually try to implement such a plan although recent reports suggest they are having problems implementing it. The logistics of such a plan are fairly basic and would do much good for many as I’ve discussed elsewhere. What is of immediate concern is that those with serious mental illnesses that come on in late teens and early twenties like schizophrenia live in terrible poverty and suffer from considerable homelessness or live in substandard places.

If the ill individuals are lucky, they have family who care for them at tremendous financial expense to the families let alone the emotional and psychological stress. An international survey conducted by the The European Federation of Families of People with Mental Illness (EUFAMI), paints a horrible picture of what families go through. In Canada, families spend an average of 15 years in that role and 1 in 3 are at the breaking point. Most feel stigmatized by professionals and ignored by doctors, nurses and social workers.

This is the reality which results in many with serious mental illness living on the streets, in shelters, begging for change at busy intersections, being arrested and transitioning into drug use. Thanks to Covid, there are now a couple of tent cities established in my own community because people have nowhere to go. The solution, of course, is long term and multifaceted. This is what is needed off the top of my head:

  • coordinated planning that involves families who today are mostly ignored
  • suitable medical services for the mentally ill which should include hospitalizations that are of sufficient length to stabilize patients. Too often, because of bed shortages, patients are discharged before they are ready and to little or no community supports or housing.
  • Adequate income so they may live with some dignity and not on a stipend that is about 40% below the poverty limit.
  • Affordable housing that matches the needs of the client (from heavy support to as much independence as required)

Adequate income can and should be achieved either by a sensible disability system or a guaranteed minimum income. A compassionate society should provide to those who are either born disabled or develop a disability with a reasonable income so they can enjoy what life has to offer – adequate housing, nutritious food, entertainment, clothing, transportation, etc.

Ontario has the most generous disability payments in Canada and yet the level is, for a single person, all of $1169 a month. If the disabled person lives in a full service group home (room and board), the money goes directly to the private operator of the home and the resident is left with a little over $100 a month for clothes, self care products, bus fare, entertainment, and other purchases. These are nothing but modern day versions of the Victorian workhouses. Is it any wonder we find many of these residents begging for change on our streets?

Supported and independent housing options vary where they exist but, in keeping with the current focus on combining mental illness and addictions together, some of these options combine both residents in the same projects. The characteristics and the needs of both clients differ so they should not be combined. Psychiatric facilities often separate the two into units for people with specific mental illnesses (schizophrenia, bipolar, etc), units for those with both a mental illness and a substance abuse, and units for substance abusers.

That separation does not carry over into community service and housing. One drop in centre that I heard of just recently combined the two groups and, as a result, were evicted from the church facility they rented. Seems that the neighbours were upset that the addicts were shooting up in the area. A supported housing complex that I am familiar with combines both and is a disaster. The mentally ill with no addiction problems are not happy. Drug use is rampant and there have been numerous overdose deaths in the past two years along with a number of overdoses where the person recovered.

The agency that runs the facility calls it a harm reduction building so ignore the drug use and supply naloxone kits for overdoses. However, the Harm Reduction Coalition defines it as incorporating:

a spectrum of strategies that includes safer use, managed use, abstinence, meeting people who use drugs “where they’re at,” and addressing conditions of use along with the use itself. Because harm reduction demands that interventions and policies designed to serve people who use drugs reflect specific individual and community needs, there is no universal definition of or formula for implementing harm reduction.”

I’m not sure how much of this the project does but I do know that the activity of those with addictions is disruptive to those who do not use substances.

If we are going to build more appropriate housing for people (and we should), it is imperative that we design for the specific needs of the people who are going to live there with appropriate supports and with input from families. It is, after all, families who support their ill relative and bear the burden of providing financial, emotional, and medical support. As mentioned earlier families are stressed out and need to know that their ill relatives will be properly cared for. To be somewhat blunt, they want to die knowing that all will be reasonably well.

I’ve just been looking at a needs assessment and action plan for what is called a justice focused mental health supportive housing project in Toronto. All involved in this are research staff from agencies such as the Canadian Mental Health Association, various corrections and addictions groups. No family to bring a measure of reality to the process.

I also have to wonder why they focus on those involved with the justice system. I’m not saying they have no needs but they point out that 25% of applicants for supportive housing in Toronto are involved with the justice system. Should supportive housing not start with the largest group who need the service like the 75% who are not involved with the justice system? They also point out that many in this group are discharged from jails or rehab facilities with nowhere to go making their need urgent. But that problem is the same as those without criminal or drug activity who are discharged from hospitals.

What made me chuckle was the suggestion that they might be able to rent units in regular apartment buildings for their clients. That naive suggestion took me back to my previous life as a government planner. I was on a working group looking at how to best deinstitutionalize what used to be called the retarded from institutions into the community. As I recall, that particular institution was for problematic people with serious behavioural problems. At the time, there was a glut of condos on the market in Toronto and one of the group thought it would be a good idea to try to rent or purchase surplus condos to be used as community group homes.

That person offered to go visit some real estate agents who specialized in condos to see if that would be possible. She returned to the next meeting to say that she was not greeted well by the agents who practically threw her out of their offices.

The other naive bit in this plan is that the housing “can be met with Housing First –i.e. direct access from homelessness to housing, minimal preconditions, no “treatment first” rule, independent tenancies, and de-linked supports.” I think this aspect of Housing First is absurd and the best example is the one I gave from my book in my obituary to DJ Jaffe. In that case of Mrs Brown, she was put directly into housing from living in the gutter at E 65th St and 2nd Ave and performing her bodily functions on the street.

It did not work and it won’t for most people.

What we need is rational planning for the mentally ill and the addicted but what we have is a hodge podge of plans and schemes that do little good. That is why we are in the mess we are in and few get any help.

A Huge Loss for Families

By Marvin Ross

I’m a little late writing this for a number of reasons but one has been shock. Many of my readers are already familiar with the fact that DJ Jaffe has left this world and left it very suddenly. DJ told very few people of his worsening leukemia and continued to work until almost the very end. In fact, a few days before his death, he sent me a note to tell me that he had removed one of my posts from his Facebook Page, the National Alliance on Serious Mental Illness, because it violated his policy.

I put it back and replied that I did not think I did violate policy. His reply was OK out of friendship, I will let it go this time.

Next, I heard he was gone. Like most people, I was shocked.

DJ first became involved in the business of advocating for the seriously mentally ill when his wife’s sister moved to New York to live with them. She had schizophrenia and he and his late wife found themselves embroiled in the politics of advocating for someone with a disease that has been and still is largely ignored by society.

He quickly learned that families are also ignored and often vilified and so this was the group he stood up for and tried to empower. DJ, over the years, has been involved with NAMI (the National Alliance of Mental Illness), the Treatment Advocacy Center and his own creation Mental Illness Policy Org. Thanks to his tireless work, he is responsible for the introduction of Kendra’s Law in New York State and the introduction in the US of the Helping Families in Mental Health Crisis Act

Kendra’s Law allows courts -after extensive due process- to order a certain group of narrowly defined individuals with serious mental illness who already have a past history of multiple arrests, incarcerations or needless hospitalizations to accept treatment as a condition for living in the community. Before Kendra’s Law, the law required people so ill they refuse treatment to become dangerous before they could be required to accept treatment. Families felt the law should prevent dangerous behavior, rather than require it. Kendra’s Law allows judges to order the recalcitrant mental health system to serve people with serious mental illness, rather than cherry picking the easiest to treat for admission.

Based on numerous studies, Kendra’s Law has:

reduced homelessness (74%); reduced suicide attempts (55%); reduced substance abuse (48%); reduced physical harm to others (47%); reduced property destruction (43%); reduced hospitalization (77%); reduced arrests (83%); reduced incarceration (87%).

If you are looking for research material, the Mental Illness Policy website is a go to source. DJ’s book, Insane Consequences, is another excellent source of material for anyone wishing to learn of the realities of serious mental illness. I reviewed the book when it first came out and pointed out that all the royalties he gets from the book are donated to Mental Illness Policy Org and to the Treatment Advocacy Center.

DJ was a friend who I talked to and exchanged e-mails with over the years but like many friends and colleagues on the internet, I never did get the chance to meet him in person. Something I do regret but long before I knew who he was, I quoted one of his advocacy issues in my own book on schizophrenia. What he had to say then is still relevant today so allow me to show you what I said back in 2008 in Schizophrenia Medicine’s Mystery Society’s Shame:

Harvard Law School or Bellevue Psychiatric – Which is harder to Get Into?

If you are mentally ill, the answer is easy – Harvard! At least that is the opinion of D. J. Jaffe, a spokesman for the New York City Friends and Advocates of the Mentally Ill as quoted in the New York magazine “Manhattan Spirit” in 1991 and reported in Torrey (Out of the Shadows). Jaffe was referring to the case of a New York homeless woman named Joyce Brown and recounted in the Torrey book. It is bizarre but a perfect example of the absurdity of the system.

Ms. Brown was a mentally ill homeless woman who resided on a steam grate at E 65th Street and Second Ave in Manhattan. She urinated on the sidewalk and defecated in the gutter or on herself. At times, she tore up money passersby gave her, ran out into traffic and shouted obscenities. Many times, she was not properly dressed for the cold weather. Five times psychiatric outreach teams took her to hospital but each time she was released by psychiatrists who deemed that she was not a danger to either herself or others.

On the Diane Rehm National Public Radio show after the Virginia Tech shootings by a mentally ill man who had fallen through the cracks and should have been hospitalized before he engaged in his murderous rampage, Torrey stated somewhat sarcastically that in order to be deemed a danger to yourself or others, you have to either try to kill yourself in front of the psychiatrist or try to kill the psychiatrist.

Ed Koch, the mayor at that time, saw the women and tried to have mental health professionals get her treatment. He was told that she was not deemed to be in danger or dangerous. Koch proposed new and less restrictive legislation that would make it easier to hospitalize someone. Koch referred to the civil libertarians who opposed hospitalizations as the crazies who deny people the right to treatment.

Under his new legislation, Ms. Brown was hospitalized but the New York Civil Liberties Union challenged that in court. In claiming that Ms Brown was not a threat they argued the following in her defense:

  • Other New Yorkers also urinated on the sidewalk
  • Defecating on oneself is not really a threat to one’s health 
  • Running into traffic was no different than jay walking 
  • Tearing up money was a symbolic example of the woman’s independence 
  • Her obscene language was no worse than what is commonly seen in movies

Judge Robert Lippman found for the Civil Liberties Union and stated that “the sight of her may improve us”. By being an offense to aesthetic senses, she may spur the community to action

Upon her release, Ms. Brown was invited to appear on the Phil Donahue Show and to address a forum at Harvard Law School.

And the legal situation has not improved.

Here is an older interview of DJ with John Stossel

RIP DJ. You’ve done well and both the families of those with serious mental illness will miss you as will the seriously mentally ill. And DJ would agree that this obit should be dedicated to the hard working and stressed out parents (mostly mothers) who struggle to help their kids when no one else will.

Premiere – My Name is Walter James Cross and I Have Schizophrenia

By Marvin Ross

walter

Premiering on Youtube July 30, 2020 at 7:30 is the latest production of Dr David Laing Dawson’s powerful one act play on schizophrenia. My Name is Walter James Cross and I Have Schizophrenia was first written about 20 years ago based on David’s experiences treating people with schizophrenia. That version of the film has been played at various conferences including the Annual Meeting of the American Psychiatric Association in New York and has been broadcast on TV Ontario.

The current video premiering on July 30 is a new production that was produced by the Artword Theatre in Hamilton Ontario and performed this past March before it was forced to close because of the Covid-19 lockdown. The March 12 production was filmed using three cameras in a performance described by the producer as “flawless”.

One review described the impact of the play as

“it’s the power of “Walter” that still, long after I’ve left the theatre, the way he experiences the world is very much with me — to the extent that I can understand it, and the play enlarges that extent.”

He goes on to say

“the remarkable achievement is that he (the actor) lifts our engagement with Walter beyond the stare of curiosity, albeit sympathetic, into a trance in which we begin to identify with the struggle of his being”

I have to confess that I did not see this production simply because I’d seen it so many times before and the original actor who played Walter was brilliant. I cannot imagine anyone doing a better job than him but I can’t wait to see. Where this production differs is that the soundscape allows the audience to actually hear the voices in Walter’s head.

Another reviewer commented that the play

“is a theatrical vessel through which we can all better understand our personal interactions with the mentally vulnerable. It’s impossible not be emotionally touched by his presentation and each and every audience member will be remembering their own Walter as the stage lights go down.”

Walter is an opportunity to understand and to sympathize with the life and challenges of someone with schizophrenia. I can’t recommend it enough. This is the link to the youtube channel where Walter will be live Thursday July 30 at 7:30 and where it will remain in case you can’t make that time. https://youtu.be/_CQadomWvUA You can set a reminder for the premier on the site.

Guest Blog Will the New Federal COVID Mental Health Funds Help Those With Serious Mental Illness?

By Home on the Hill

Prime Minister Trudeau has announced an investment of $240.5 million to develop, expand, and launch virtual care and mental health tools to support Canadians during the COVID Crisis. This action is laudable, however, will people with serious mental illness be helped with this money?

Many have symptoms such as “anosognosia” or lack insight that they are ill and will not reach out and ask for the help that they need. Home on the Hill has heard from a family where the telephone crisis service asked that the family member with schizophrenia, and in crisis, make the telephone call himself which he did not do.  When things became overwhelming, the family called the police which they had done many times in the past.. While the police do treat families with respect, their actions are not subtle and five police cars can land on your street which causes consternation and suspicious questions from neighbours.

Kathy Mochnacki, a family caregiver and Chair of Home on the Hill, attempted to communicate that  “anosognosia” prevented people from accessing care at the Service Coordination Council on Mental Health and Addictions of the Central Local Health Integration Network (LHIN) and felt uncomfortable with the response of some members who did not appear to understand this symptom. Over the three year span of this Council, she repeatedly asked that a psychiatrist attend the meetings but this request was disallowed even though psychiatrists play a significant role in a family member’s care.  This Council was to embed the patient and family voice and an Interim Report from the Centre for Excellence in Economic Analysis Research (CLEAR) evaluation group of St. Michael’s Hospital in Toronto recommended  “meaningfully engaging people with lived experience and their family members”.

Despite this, the family voice was not heard. Until it is, scenarios like the above described example will continue to happen.

Education to service providers about the symptoms of psychotic illness would help them understand anosognosia and other symptoms of psychotic illness which prevent the individual from reaching out.  Service providers would then understand that by not asking for help, the individual  is not expressing a choice but demonstrating a symptom of his or her illness. And families are not left with the only option of calling costly emergency services such as the police. (please see a training opportunity about anosognosia education by Dr. Xavier Amador)

The above mentioned family are grandparents with their own health issues whose grandson was finally taken to hospital by the police but was shortly discharged.  He walked all the way home from one city to another and arrived at the family home around midnight.  When we last checked, the grandparents said they are “practicing deep breathing and are saying prayers” and desperately scrambling for emergency housing.

Is this how our society should treat its most ill citizens and their families?

Is there a way that this new funding could lessen the burden of this family when the reason for their distress is systemic?  

And why does the current COVID pandemic garner a response of mental health funds, when the ONGOING PANDEMIC OF UNTREATED PEOPLE WITH SERIOUS MENTAL ILLNESS who lie abandoned on our streets, and in our jails continues to be ignored? 

Five thousand citizens live with a serious mental illness in the city of Richmond Hill alone. These citizens deserve appropriate hospital stays, education for them and their families about the illness, a psychiatrist, a family doctor for the many physical issues that they experience, rehabilitative supports, appropriate supportive housing and a mental health system which listens to them and their families with respect.

The COVID pandemic is an opportunity to draw the curtains back, and ask some hard questions. The family home, out of necessity, has replaced the asylum and until we get adequate and appropriate supportive housing, this will always be. Family caregivers perform most of the care tasks and ask that this fact be appreciated.. It is not a role that they chose. While families are included in meetings with the doctor when the patient has cancer, they are so often excluded  from the discussion if their loved one has a mental illness even when the patient has given permission.

Is it not time for mental health professionals to help mitigate the myriad of barriers that families experience like the unrealistic Ontario Mental Health Act and entrenched attitudinal barriers. Can we not streamline, enhance (like increase hospital beds) and coordinate services that work to make it easier for patients and families?. Is there an opportunity to evaluate services and not depend solely upon inputs like the number of visits or the length of the wait lists but study outcomes such as whether the youth suicide rate has gone down?.

Are there innovative ways to engage vulnerable people at risk as 50% of people with schizophrenia have the symptom of “anosognosia”.  Could service providers look at less stressful ways to deliver care such as the practice of visiting nurses who give injections now practiced by St. Joseph’s Hospital in Hamilton. Finally, many families who look after a vulnerable relative with no help from the system are bewildered at the costly bureaucracy which appears detached and totally removed from what they are experiencing.  Is there a way, instead, to spend our precious financial resources on these aforementioned much needed determinants of health for people with serious mental illness?

Home on the Hill is a supportive housing initiative in Richmond Hill, Ontario. For more information, visit http://www.home-on-the-hill.ca/

Addendum

A recent editorial in the Lancet points out that the one group that is not getting any consideration during this pandemic are those with serious mental illness. The authors suggest that:

Those who wish to build fairer societies and health systems after the pandemic ends must learn about and prioritise the needs of people living with severe mental illness as a matter of urgency.

Assorted Comments on Depression, Schizophrenia and the White House Press Corps

By Marvin Ross

Mental illness is something that is found in many people in all walks of life and to varying degrees of seriousness. Unfortunately, society does not see examples of successful people who are struggling quietly. If we did, maybe more of us would have a greater compassion. I say this with the understanding that someone’s health condition is personal.

Baseball fans will be familiar with the late Roy (Doc) Halladay who died in a single plane crash a few years ago. Halladay was a brilliant pitcher during his time with the Toronto Blue Jays and he continued his brilliance when he went to Philadelphia when he qualified as a free agent. In 2010, he pitched a perfect game (no hits and no walks) and later that year, he pitched a second no hitter. He was only the fifth pitcher to throw two no hitters in one year.

Aside from his skill as a player, Roy showed a great deal of empathy towards kids with disabilities. While in Toronto, he and his wife outfitted a box at the ballpark for children from the local children’s hospital so they could enjoy a game with their families – “Doc’s Box”. Every year with the Jays, he donated $100,000 each year to the Blue Jay’s Charity.

According to a new book just being released, “Doc: The Life of Roy Halladay”, by Todd Zolecki the Philadelphia Phillies beat reporter for MLB.com,:

“He struggled a lot with depression,” Brandy (his wife) said. “He struggled a lot with anxiety. Social anxiety. He never felt like he was good enough or funny enough or liked. He was a sad spirit. But I don’t want that to overshadow all the great times.”

Depression and anxiety can impact anyone.

New Schizophrenia Research

Some new research suggests a reason for the sex disparity in schizophrenia. It is well known that schizophrenia tends to be less severe in females than in men and some have hypothesized that the reason is that the onset in females is later. By the time it raises its head in females, they have had more time to learn academically and social skills. A gene called C4 is more pronounced in men. This gene is protective against lupus and another auto immune disease called Sjogren’s Syndrome. Far more women get these two conditions then men so the suspicion is that it protects men from them but makes them more susceptible to schizophrenia..

Those carrying more of this gene were 7 times less likely to get Lupus and 16 times less likely to develop Sjogren’s. They were 1.6 times more likely to get schizophrenia. This research does suggest some new avenues for treatment of these conditions.

Another bit of research finds that people born blind do not develop schizophrenia. What is thought is that just might be something in the way the world is perceived that protects those who are congenitally blind from developing schizophrenia. If the way a person sees the world is off, it becomes harder to predict what is going to happen and the brain steps in to try to correct for this failure. Someone who is blind from birth, does not have this problem. An interesting observation that needs to be explored with the goal of finding new treatment modalities if this pans out.

Follow Up on the White House Press Corps.

The day after my blog on the failure of White House journalists to challenge Trump’s claims, someone did. Trump got quite upset and walked out. Congratulations to the young lady from CBS for doing that. It is a start but more need to start challenging him.

Ontario’s Schizophrenia Society is No Longer – And it is a Shame

By Marvin Ross

Since 1979, families of people diagnosed with schizophrenia in Ontario have had an organization dedicated to offering support and advocacy. No longer!

The Schizophrenia Society of Ontario has now become the Institute for Advancements in Mental Health (IAM). Instead of providing support to the families of people with schizophrenia and advocating for better services, they are now “Innovating, Supporting, Driving Change with people impacted by mental illness”.

I have no idea what that means but this is one of their projects:

“Working with MOCA, IAM evaluated a light therapy installation by artist Apolonija Šušteršič, the first of its kind in North America. In particular, it looks at the effect on museum patrons to determine whether such spaces can help people with seasonal affective disorder (SAD), or other related depressive symptoms. This is the first large scale light installation used as a wellness intervention, with evidence helping to better understand the potential for scaling in other public spaces, such as retail or recreational centers.” (sic this is Canada)

They don’t define MOCA but in exploring their website, I think it might be the Museum of Contemporary Art in Toronto.

As one person I showed the website to said of the web write-up:

“The most egregious use of $20 words strung together in a totally meaningless way.”

This is how they describe their mandate:

“we are committed to community engagement, empowerment and system change that directly draws upon the strengths of those affected by mental illness.

Working closely with a diverse portfolio of stakeholders including government officials across several ministries and jurisdictions, IAM has the expertise and the flexibility to bring innovative models into traditional spaces, disrupting the existing systems that have not led to widespread progress, and creating sustainable and effective change for people now, and in the future.”

These goals are nothing more than institutional gobbleygook. It is all utter nonsense – better grammatically than Trump but along the same lines: illusions sold as fact.

So, who are the people doing this? No idea. They do not tell us who their staff are let alone what their qualifications are. Nor do they list the members of their board. They do list numerous people who they call advisors. That list includes a director of airport operations, someone from the aerospace industry, artists, and one psychiatrist plus someone from big pharma and other organizations. Their partners do, however,  include some in mental health.

They are strong believers in cognitive behavioural therapy (CBT) for psychosis along with increased community based supports and supports for families. CBT may have its place but it is not the main treatment for someone with a serious mental illness. As families will tell you, what is needed is more beds in hospital and longer stays in hospital to stabilize patients.  We then need more community supports for those discharged including affordable housing. In Ontario, we need a revised mental health act that makes it easier to hospitalize patients when they do not understand they are ill and that does not discriminate against family by hiding behind outdated privacy legislation.

Those issues have been at the centre of family advocacy in Ontario (and other jurisdictions) for as long as I can remember. Those are the issues they should be fighting for and did in the earlier days of the Schizophrenia Society.

Before giving a little history of where they came from, I would like to comment on another advocacy issue they consider key. They say:

Mental illness is commonly treated with pharmaceutical interventions that often involve a lengthy process of trial and error to find the best-suited medication(s) to address symptoms. Yet, consistent access to affordable and effective medications can be challenging due to costs associated with filling a prescription and the complex system of public and private drug plans.

The first sentence is OK. Finding the right drug and the right dose is difficult and time consuming but most of the time, the drugs will work to alleviate many of the symptoms. The second sentence sounds like it may have been influenced by big pharma. People who have a disability including a psychiatric disability and cannot work are given government support payments. In addition to a monthly amount (still too low and below the poverty line), their drugs (and all their medical needs) are paid for by the province. Not all drugs are covered but the important ones are and the new drugs may be slow to get listed but they do get listed.

If they want to advocate for prescriptions, then they could push for Clozapine to be used more frequently than it is as I argued in an earlier post.

They do say that they have evolved from the Schizophrenia Society of Ontario which was begun when a group of families in Oakville Ontario came together and formed the Friends of Schizophrenics in 1979. The name was changed to Schizophrenia Society in 1995 and the organization goal was to support families and to advocate for some of the key issues I mentioned above.

That support and that advocacy is still desperately needed. Do we really need a new organization with mostly incoherent  goals.  What they are doing now is nothing but a betrayal of the legacy of those families who founded the original Friends of Schizophrenics. And they use a name (IAM) that sounds like a pet food company (IAMS).

Debunking Another Anti-Psych Myth and Worthwhile Anti-Stigma

 

By Marvin Ross

Another myth claimed by anti-psychiatry advocates is that people with serious mental illnesses like schizophrenia have significantly shortened lives because of the pharmaceutical treatment they get. There is no doubt that psychiatric medications have bad side effects that result in greater susceptibility to physical ailments like diabetes and cardiovascular disease but there is another explanation that is largely overlooked – stigma by medical professionals.

Over the years, there have been a number of studies demonstrating that those with serious mental illness do not receive adequate physical health care. A 2018 study pointed out that There is evidence of inequitable access to and/or uptake of physical and dental health care by those with schizophrenia”.

A 2011 study suggested that there is sufficient evidence that people with SMI are less likely to receive standard levels of care for most of these diseases (Nutritional and metabolic diseases, cardiovascular diseases, viral diseases, respiratory tract diseases, musculoskeletal diseases, sexual dysfunction, pregnancy complications, stomatognathic diseases, and possibly obesity-related cancers) .

A cross sectional survey in 27 countries found that More than 17% of patients experienced discrimination when treated for physical health care problems. More than 38% of participants felt disrespected by mental health staff.”

the latest study published in January comes from Sweden where there exists an impressive database of patients to draw upon. What researchers did was to compare 4536 patients (cases) and 44,949 controls. Cases included patients with reported preventable harm in primary health care and emergency departments from January 1st, 2011 until December 31st, 2016.

What they found was that Psychiatric disease, including all psychiatric diagnoses regardless of severity, nearly doubled the risk of being a reported case of preventable harm. The authors pointed out that a significant reason for this is what is called diagnostic overshadowing. This is a process whereby physical symptoms are misattributed to mental illness and therefore ignored.

Most of us (and I suspect mainly women) have been told that our complaints are all in our heads when doctors cannot find a cause for the symptoms. When someone with schizophrenia reports symptoms, they are often overlooked because of the schizophrenia.

The most egregious example of that took place at the ER at St Joseph’s Health Centre in Hamilton Ontario in 2002. Rusty Potter, a 40 year old man with schizophrenia and asthma was sent to the ER by his family doctor because he had pneumonia. Randy was known to the ER staff because he volunteered at the hospital and his address was a group home for people with schizophrenia. As a result, they assumed his problems were psychiatric despite what he told them. When he was having increased difficulty breathing, a nurse handed him a paper bag to breathe into assuming he was having a panic attack.

Randy arrested and died in the waiting room.

I wrote about this in my book Schizophrenia Medicine’s Mystery Society’s Shame and quoted one of the patient advisors who wrote to the local paper and said that:

persons with mental illness do not obtain appropriate medical treatment. All too often, our clients don’t get access to medical services or their concerns go unrecognized because the symptoms are viewed as part of their illness or they are attention seeking by asking for help.

Dr Miriam Schuchman wrote in another Canadian paper (The Globe and Mail), that medical staff in doctor’s offices or in ER’s may be uncomfortable treating these people.

There goes another anti-psychiatry myth and a stigma that does need to be corrected.

And on another note, the world recently lost one of its key anti-psychiatry advocates in Toronto’s Bonnie Burstow who began an anti-psychiatry scholarship. Ms Brstow received numerous obituaries including the New York Tines 

Twitter, Thomas Szasz and the Channukah Attack

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Image by OpenClipart-Vectors from Pixabay

By Marvin Ross

At the end of December US psychiatrist Allan Frances tweeted that in 1977 he had dinner with Thomas Szasz (The Myth of Mental Illness). Frances reported that he asked Szasz if he would intervene were his child suicidal because of psychosis. He smiled/answered: “I am a father first, a libertarian second”.

Dr Frances responded that “Szasz could hold extreme views re meds/commitment only because he never once treated a severely ill patient”.

Dr George Ikkos replied that “In 1994 Szasz insurance paid $650,000 for negligence to widow of patient with “manic depression” who committed suicide following his advice to stop lithium. The source is a book called Mad Muses by Jeffrey Berman (P110).” Dr Ikkos is an “elected Honorary Fellow of the Royal College of Psychiatrists. The Honorary Fellowship is the highest honour the College bestows” (from his website.)

Also chiming in to this interesting twitter exchange was Dr Mark Ruffalo who provided a link to an interview that Szasz did with Jonathan Miller in 1983. He summarizes:

Szasz concedes that society should treat the gravely disturbed (“mad” or psychotic) person in the same way it treats the person who has been rendered unconscious by an accident, implying support for involuntary treatment in these cases.

The entire interview can be seen below and these comments are made around the 34 minute mark. Prior to that, Szasz states that psychiatrists either lock up the innocent or free the guilty and that no mental illness existed prior to the advent of asylums in the mid 18th century.

I’m not sure what provoked the initial tweet by Dr Frances but a couple of comments before transitioning to Channuka. The initial question asked of Szasz is something that I always ask of doctors when they propose a certain course of treatment or a medication. If this was you (or a spouse or parent) would you still suggest that? We should all do that.

The other comment pertains to libertarianism. Szasz suggests that libertarians would always propose no involuntary action. I’m not sure that is a valid position for libertarians and it is definitely not for a psychiatrist I know who is one. This particular Toronto psychiatrist once told me that no one is as libertarian as he is and he firmly supports involuntary committal and treatment. People have an absolute right to decide their own fate but in the case of someone who is psychotic, he said, their mind is incapable of making rational decisions. It would be wrong to allow them to make those choices when so impaired.

While this twitter feed was happening, New York State and FBI officials were declaring the attack against a Channukah party in New York State to be an act of domestic terrorism and that the perpetrator, Grafton Thomas, would be charged with hate crimes. Of course, we all now know that Mr Thomas is a man with untreated schizophrenia.

It is not a hate crime nor is he a domestic terrorist.

He is a delusional soul who has not been provided with treatment as the mental health advocate DJ Jaffe pointed out in his excellent assessment in the New York Daily News. Jaffe points out that Thomas’ long term pastor could not understand why he had never been institutionalized stating “There hasn’t been anyone who has given a real solution to deal with a grown man who is dealing with schizophrenia, other than ‘Go home and call us if something happens.’ ”

Situations like this are not unique to New York State or to the United States but to Canada as well. Every one of those jurisdictions has examples of crimes committed with and without deaths due to the failure to treat people with serious illnesses.

Of course, one of the key reasons that people do not get proper treatment even if it requires involuntary hospitalization stems from the works of Szasz and all the others who deny the existence of serious mental illness.

What is also equally galling is the rise of anti-semitism and other forms of racism in the world today. While US officials were quick to jump on the Channukah attack as a hate crime, they have seemingly ignored others. In the week before the holidays, there were 4 attacks against Jews in the New York City area plus the assault in Jersey City of a Kosher supermarket according to Bernie Farber. Farber is the Chair of the Canadian Anti-hate Network.

Farber also reminded readers of Trump’s anti-semitic comments at a dinner for the Israel American Council. Faber neglected to mention Trump’s comments after the White Nationalist march in Charlottesville or Rudy Guliani’s anti-semitic tirade as reported by CNN.

Attributing the violent delusions of a man with schizophrenia as a hate crime when the villain is our failure to treat mental illness while ignoring real acts of hatred is a travesty.

I never thought I would ever applaud anything from Boris Johnson or from a Chasidic Rabbi but both got it right. Johnson delivered a very forceful speech on fighting anti-semitism while the Rabbi whose house was invaded spoke out about the need for greater understanding and support between minority communities. “The Hasidic Jews of Monsey must ignore the outsiders who want us to take up arms and politicize our tragedy.”

Psychosis is Not Normal – A Psychiatrist Responds

By Dr David Laing Dawson

This morning I witnessed a taxi pull up to a doctor’s office stopping as close to the entrance as possible. The cabby got out, went around to the passenger side and gently helped an older woman ease her way to the pavement. He then took her by the arm and slowly helped her up six stairs to the front door. He opened the door for her and only left when he was sure she was safely inside. All of this in a cold rain with remnants of snow and ice on the blacktop.

My despair for humanity is momentarily lessened.

But I must go back to a brief history of mental illness treatment as a response to Ms Nanos’ guest blog and some of the comments that it received.

When Medicine had only a few potions and surgeries that actually worked on any illnesses (let’s start somewhere in the early 1800’s) the severely and persistently mentally ill were hidden by their families, left to die in the streets, jailed, banished, punished, or they found their way to Asylums created by religious groups (Quakers, Sisters, Brothers).

Though Medicine had little to offer at the time, doctors were invited into the Asylums to help. These doctors became known as Alienists. (I’m not sure if it was a term of endearment or prejudice)

Fast forward through revolutions, civil wars, the industrial revolution, urbanization, massive population growth, the State taking over the Asylums, and the age of science. Scientific medical advances (the disease model) eventually led to the successful treatment (more importantly the prevention) of many things, of many illnesses other than mental illness, though a scientific approach did lead to a delineation of specific mental illnesses still quite valid today. And of course the Asylums grew along with the urban populations.

All that was tried to treat severe mental illness (from rotating chairs and cold baths to insulin coma and numerous varieties of work, rehab and talking) failed. Though at least through this time (about 1870 to 1950) there were some kinder periods when the Asylums lived up to the meaning of the word, and other less kind periods (wars, economic depressions) when the Asylums (evolving through titles of Asylum, Hospital for the insane, Provincial or State Hospital, to Mental Hospital and Psychiatric Hospital) at least provided three square meals and a bed to sleep in for many who would not otherwise survive.

With so many advances in scientific medical treatment developing, academic medicine (with some exceptions) lost interest in the untreatable population inhabiting the mental hospitals. Religious explanations for their existence (demonic possession for example) no longer sufficed, so it is no wonder, through the 1930’s, 40’s, 50’s, and 60’s, a plethora of psychological, sociological, familial, genetic, and conspiracy theories developed to explain psychosis, mania, depression and insanity. The new Medical specialty, Psychiatry, remained aloof. Academic and private practice psychiatry focused on the worried well, the neurotic, the anxious, the despairing and moderately depressed. They stayed clear of the mental hospitals, with a few exceptions when they brought and applied a variety of psychological and psychoanalytic theories to some wards of these Asylums and failed dismally to make a difference in actual outcome of illness, though probably bringing some improvement to many lives.

But then quite suddenly (1950’s and 1960’s), and mostly accidentally, medications were discovered that actually work: Medications that calm severe anxiety, obsessions and compulsions, that overcome severe depression, that level the profound mood swings of manic depression, that quell delusional grandiosity, and that actually work for the most puzzling and debilitating mental illness of all, schizophrenia.

The second world war was over, good economic times had arrived, our medications worked and we all looked forward to an era when mental hospitals would no longer be needed.

Paradoxically as the medications worked, and many people who otherwise would be living within the shrouds of psychotic illnesses were now functioning as independent citizens, the causality conflict between nature and nurture intensified, as did the calls to abandon the disease model.

Now I should note that Medicine (Doctors) have always over reached. When we have something that works on one problem we try it on another. At least we do this until the studies prove that it doesn’t work for the second problem.

But I think the real reason for this intense anti-psychiatry movement is two-fold: on one hand pharmaceuticals that work to change mood and thought, plus more and more sophisticated ways of watching the brain do what the brain does, undermine that last vestige of hope and desire that each of us is more than “a sloppy bag of mostly water with a limited life span”.

And professional aspirations and jealousies of status and turf.

Fast forward again (2000 to 2020) and we find our fear of psychiatry, plus the aspirations of growing numbers of psychologists, plus politicians jumping on ways to save money, (or shift costs to other jurisdictions), plus identity politics, plus changes in societal attitudes that are hard to fully understand from inside…..have left us in the disheartening position of having a mental illness treatment system worse than it was 40 years ago.

Or, as a colleague warned 30 years ago, we are heading for a time “when the good schizophrenics will get good treatment and the bad ones get none”. By that he meant, if I must translate his words into today’s reality, people with mental illnesses that respond to medication and who remain compliant with treatment and develop enough stability and insight, and have sufficient family and community support will get good treatment and helpful counseling and rehabilitation services, while those who don’t will be left to the streets and the jails.

And he wasn’t even considering the “Recovery Movement” and the plague of euphemisms that give cover for this disgrace.

The other night we had an Opening at the gallery: Live music, glasses of wine, a table of food and a growing crowd of art lovers. Then two young men wandered in. The leader was bundled in bulky parka over a hoody, drooping pants, multiple sweaters of varying length, with wild hair flailing beyond his parka. He was also carrying a very large rock partially wrapped in plastic. The second young man was gaunt, undernourished, stiff in his movements and vacant of eye.

They gravitated to a sitting area and a small bowl of chocolate bars. Others left the area and I got them sitting on a couch and I sat with them, between them. They quickly demolished the chocolate bars, dropping the wrappings on the floor. The thin young man slipped in and out of a catatonic state staring blindly and hearing nothing, unaware his nose was dripping, his face immobile, flat and blunted. He did tell me when I asked that he lived on this same street many blocks away. The other man babbled nonsense, making connections between the glass shards embedded in his rock and insects, spirits, goddesses and aliens. I offered him ten dollars for his rock but he said he wanted a quarter million. He said he has a house in Kingston, another in Mississauga, and a car somewhere in Hamilton. And his grandmother’s name is Olanzapine.

I took them to the food table but the lean one stood immobile over the cheese tray dribbling from his nose and the other bypassed the toothpicks and forks to stick his hands in the pickle bowl so I sat them down on a bench and brought them a plate of cupcakes.

And then I saw them on their way. The gaunt one headed for the door but the other held him back to choose a coat off the rack. I was satisfied the coat they chose was theirs and not that of a guest because it exuded the same odour that they did. And I wished them a good night.

But, ahh I thought, how much they would benefit from a month or two at the old Hamilton Psychiatric Hospital, or any other 1985 psychiatric hospital, with a warm bed, food, shower, activities, routine, the right medication, good counsel, and seamless follow up with regular outpatient care.

And here are two women with schizophrenia who talk about their difficult journey

And these are families asking how to help their ill relatives