Beliefs constitute a resolution of uncertainty, angst, of anxiety, of the unwelcome state of fear.
Our sensory and interpretive processes tell us there is danger afoot, our arousal system kicks in, and we become prepared, hormonally, to fight or run. But when there is no clear object to fight or to run from, our state of arousal may persist causing our brains to seek other mechanisms to either ameliorate the fear and/or find an arbitrary target.
Hence obsessions, compulsions, stress reactions, avoidance, hoarding, drug use, misdirected anger and delusional thinking.
Enter QAnon, an outlandish set of notions and beliefs that is gaining more and more traction in the befuddled States of America, and creeping a little into Canada, and being put to use by the new fascists in Germany.
Anxiety can be cumulative and there is lots in this world to be anxious about in this year of COVID-19, climate change, and political unrest. And as anxiety accumulates without a visible thing for us to fight or flee from, the chance of our brains leaping to a delusional explanation increases.
It is not hard to see how our troubled brains can arrive at the notion that COVID-19 is either a Chinese military plot, or a hoax contrived by the enriched tech industry, but it is difficult to understand the conclusion that Hilary Clinton is running a pedophile ring – (unless like me you have met Jesus and God more than a few times on psychiatric wards).
But here is the point regarding QAnon and America:
QAnon is a response to the accumulation of unremitting anxiety, some of which can be alleviated by good social policy.
As a Canadian I have some anxiety about my health, but no anxiety about the availability of free and accessible medical care. I am also pretty sure that not one of the seventeen year old boys in my neighbourhood owns an AR -15. On the same topic, when a police officer stops me for speeding or drifting through a stop light, and is now walking toward my car, he knows the odds are that I do not have a loaded gun in my possession. And I also know that my grandchildren attend good safe public schools, as did I and my children, and that there is a good chance that they will be able to afford college or University. And I am pretty sure that within our parliamentary system of democracy no prime minister of any persuasion can steer us into crazy extremes of either capitalism or socialism or disband the police force or start a war on her own.
Hence my prescription for treating the USA’s penchant for spawning dangerous delusions, by reducing the background anxiety of the populace:
1. Universal Health Care Now.
2. Pour money into and build a superb public school system.
3. Make that school system and all your neighbourhoods inclusive.
4. Gun control to whatever extent is politically possible.
5. Some form of universal guaranteed income for all.
6. Free or affordable secondary education as well.
7. Affordable Housing
8. Regulations that will assure us cars are safe, planes won’t fall out of the sky, our water is potable, our skies are clean, our medicines safe…..
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.
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.
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.
I have schizophrenia, they tell me. They line up my symptoms and thrust the diagnosis in my face. So here are your pills.
When I stop taking those medications I lose my grip on reality, but I don’t know this. They – my psychiatrist, a Security guard, the police – bring me to the hospital (again) and I am told (again) that I have schizophrenia.
No, I don’t. People with schizophrenia don’t have a Master’s degree in Neuroscience. I’m simply too intelligent to have schizophrenia, right?
Then why do rats eat my brain, why do Voices yell at me, and why am I being stalked by a homicidal man with a sniper gun (I’ve got proof)? I assume it is normal. I don’t have any friends and I have withdrawn from my family so no one but Them (doctors, nurses – everyone in league with the Enemy) diagnose me, treat me. So here are your pills.
I remember my first antipsychotic. I was in the psychiatric hospital after a failed suicide attempt and, after drawing me out, my psychiatrist decided to start me on risperidone. She did not tell me what it would do. Soon, my Voices were quieter, quieter, quieter. Rats stopped chewing and the sniper stopped tracking me. Wow, I thought. Those were symptoms? That was schizophrenia? The scientist in me knew it wasn’t a simple placebo effect, since I had had no idea what those little pills were going to do. I became open to the idea that I might have schizophrenia.
Yet repeatedly, over the next half-dozen years, I would leave the hospital quietly, only to be forcibly returned after “decompensation due to medical noncompliance.” That is, I fell into the oh so common trap of thinking: “I am doing well. I don’t need these pills any more. I’m cured.” Round and round the revolving door.
You would think that after all of this, I would surely realize that I had schizophrenia. I didn’t, though. I was under the heavy spell of anosognosia: the physiological inability to recognize that one has an illness. It is common, and strong, in schizophrenia. But in me, equally strong was a scientist. So, experiment number one: recall that first antipsychotic? Well, it did strange things, things I was not expecting.
My second hypothesis: maybe I was just in it for the attention. When psychotic and certified in the hospital, I would bash my head against the concrete wall until both it and I were bloody; that bled the brain-eating rats out. It also earned me restraints, physical and chemical, which I raged against. I screamed and kicked and cried but the strong Security guards tying me up and the nurses with injections (rat-laden!) for me always won. That was attention, I reasoned. So I decided to do it. Bang head, fight restraints, scream over injections… it was a good show, but it felt foreign. I was an actor, not a true patient, that time, making me realize that all the other times had actually felt real.
Then there were the Voices that harassed me continually. They yelled at me to kill myself, forbade me to buy even a coffee, and hissed at me if I dared talk to anyone. When these receded with medication, I later – when everything schizophrenic seemed out of focus – I attempted a third experiment: I tried to create Voices. I thought really hard but to no avail. All I could generate was the “little voice in my head” that everyone experiences from time to time.
Finally, convinced I was too smart to have schizophrenia (an idea of mine echoed by an arrogant psychiatrist), I fought to keep an A+ average at university. I earned prestigious scholarships (two NSERCs, a Michael Smith scholarship, and various others). That’s not something someone with schizophrenia does, right? No; there are other people with schizophrenia who attain graduate-level education. It is very hard, but it can be done, particularly when the person is stable on medication.
So a neuroscientist with schizophrenia. I tried so hard to prove I was immune to schizophrenia, but because of my experiments, I am convinced. It was a relief of sorts: an explanation, a treatment, a hope. It came to prove not that I didn’t have the disorder, but that I can live beyond it. For me, medication is key; taking it reliably, the master key. And I become a person with schizophrenia who is well.
This blog first appeared in Huffington Post on March 17, 2013. Erin Hawkes (now Erin Emiru) is the author of When Quietness Came: A Neuroscientist’s Personal Journey With Schizophrenia published by Bridgeross and available in print and e-book format.
I recently wrote an op ed in which I stated that, despite the attacks on the police, they do a pretty commendable job when dealing with the mentally ill. That conclusion is based on my own dealings with various police forces and the examples of positive encounters that others have reported. I’ll go so far as to say that the majority of cops show concern and compassion and much more of concern and compassion than a lot of professionals in the field.
Yes, there are horrific examples of things going bad but they are (in Canada at least), a minority. They get a lot of publicity since “dog bites man” stories do not get reported while “man bites dog” stories do.
Cops who mess up these calls need to be dealt with and the police unions need to stop defending the screw-ups. But, my advice to the so called advocates is to get the facts before sounding off as the Toronto case of Regis Korchinski-Paquet demonstrates. The original story about how this 29 year old racialized young lady fell to her death from the 24th floor of her apartment building was not substantiated by the facts.
It was reported that her mother called 911 and asked that the police come and take her to the Centre for Addictions and Mental Health (CAMH) as she was having a mental health crisis. There were suggestions that the police had pushed her off the balcony. People demanded that criminal charges be laid against the police and suggestions that the police actions were racially motivated.
The mother called 911 at 5:13 PM saying that her daughter and her son were fighting and that she wanted the police to remove her from the house. She said “I want the police to take — literally take her out of my house. I don’t want her here.”
At 5:15 PM, Ms Korchinski-Paquet calls 911 while her mother is still on the phone and tells the dispatcher that she is being physically attacked at that she needs an ambulance. Simultaneously, the brother calls 911 and tells the dispatcher that he is being attacked by his sister and that she has two knives and a broken bottle. He said he is in the stairwell and his mother in the hall. Both callers mentioned that Regis had suffered an epileptic seizure and that she is erratic after but has not calmed down.
Epilepsy is a neurological disorder and it can result in aggressive behaviour after a seizure but it is not a mental illness. Epilepsy would be treated by a general hospital and not a psychiatric facility like CAMH. The only mention of CAMH came towards the end of the chronology.
The 911 dispatchers labelled this an urgent priority one call and police were dispatched at 5:16. Family domestic disputes are among the most dangerous for police so it is not surprising that a number of officers were sent.
At 5:22 PM Regis again calls 911 to tell them that her mother was attacking her and that her brother had punched her in the head. She also told them that they pulled knives on her and that her brother’s kids were in the apartment when asked about children.
At 5:29 PM, the first of seven officers arrive and find them all in the hall. The mother and daughter are together while the brother was at the other end of the hall. The police try to keep her apart from her brother and Regis then tries to push past the police. She then makes another call to 911 at 5:30 PM and tells the operator that she was attacked by both her mother and her brother and that he mother had been drinking since 10 that morning. She then tells the operator that she has to pee.
At 5:32PM one of the officers radios the dispatcher to say they are at the scene, that two people are present and that there are no knives and an ambulance is not needed. At 5:34 PM, two more cops show up. At 5:35 PM, Regis tells one of the cops she needs to go to the bathroom and he lets her in the apartment. At the same time, the mother tells another cop that she wants her daughter taken to CAMH and a paramedic arrives.
Both the mother and the brother go into the apartment (original reports said the police would not allow them to enter). While in the bathroom, Regis calls her father. Police tell her to talk to the paramedic but she refuses, backs away from everyone and goes out onto the balcony. At 5:39 PM, two more police arrive. Regis refuses to come back in when asked to by police and holds the door shut with her body. She then rushes to the railing and scales it.
At 5:39 PM, one of the officers radios in that she is attempting to climb onto the next door balcony which was blocked by netting presumably to prevent pigeons from landing. The police clear the apartment and go next door to try to gain access but Regis has fallen while her mother screams that she jumped..
She is declared dead at 6:05 PM.
I believe the term that that would be used by a coroner is death by misadventure. Certainly, there is no indication in any of this that the police did anything wrong, that they were not equipped to deal with a mental health call as this was not one, or that racism was involved. I suspect that the cops were traumatized by this.
At the time this happened, it was put down to another example of systemic racism a fact that I do not dispute exists but that does not exist in this instance. Jagmeet Singh, the leader of the Federal NDP party tweeted “Many of us are feeling a lot of pain right now. Anti-Black and Indigenous racism aren’t a coincidence. They are decades of policies that have systematically undervalued human life – by design. Colonialism. Underfunding. Social exclusion. Poverty.“
The facts presented by the Special Investigations Unit on this issue did not show the complaints and the claims of racism and maltreatment of the mentally ill. When the report came out, the Toronto Star ran an article stating that many in the mental health community were still critical of how this was handled. One commentator was Steve Lurie, the executive director of the Toronto branch of the Canadian Mental Health Association. Lurie is one of the media go to people for comments and a prolific letter writer to newspapers.
Lurie told the Star that “It’s not exactly clear what actually transpired except there was a large number of officers responding to a possible mental health crisis that escalated in a very small space.” Duh!. It was clear what transpired if he bothered to read the report backed up by phone transcripts, security tape footage and witness statements.
Jennifer Chambers, the executive director of the Empowerment Council, an organization representing people with mental health and addiction issues in Toronto, said “what struck her most was the number of officers in the apartment shortly before Korchinski-Paquet fled to the balcony. “That would be pretty scary, all those large, armed people,” Chambers said. She added it’s important to understand that fear is the underlying feeling when a person is in a crisis, and the first thing to do is try to calm them.
The officer did try to encourage a conversation between Korchinski-Paquet and the female paramedic, but she may have been too overwhelmed to take that in.”
Well yes, there were a lot of cops present but it was a high priority domestic with knives and bottles mentioned and children present. Given the number of 911 calls and what sounded like extreme chaos, who can blame them. Ms Chambers and her organization launched a failed challenge to certain provisions of the Mental Health Act that were designed and do help and protect psychiatric patients.
I have seen suggestions that this call should have been responded to by a specialized mental health team which is foolish. This was not a mental health call but rather and domestic dispute call involving weapons. That would not be appropriate for a social worker or a mental health nurse to attend. Reminds me of the cartoon I saw recently of two cops talking. One says lets see how the social worker deals with the six foot naked guy in the middle of a psychotic episode and throwing chairs.
Besides, health professionals do not always do a good job. A few years ago, I wrote about a man with schizophrenia who went to the ER because of depression but then decided he wanted to leave. He had been placed in isolation but the staff refused to let him leave and a scuffle ensued. Staff called the cops who tasered the man and wrestled him to the ground. As often happens when someone is roughed up by the cops, the victim gets charged with assault. In this case, he was also charged with trying to grap the cop’s gun as his hand brushed it.
When the case finally got to trial, the judge acquitted him and commented that he did not believe a word of the testimony of the cops or the health professionals. I advised the man to find a lawyer and sue. He did and eventually reported to me that he was very very happy with his settlement. The hospital staff suffered no consequences and neither did the cops.
What surprises me is the support in such a dubious case as Ms Korchinski-Paquet and the virtual ignoring of two other cases from Peel Region (west of Toronto) where the police were clearly in the wrong. In April, police shot 26-year-old D’Andre Campbell who suffered with schizophrenia and had called the police for help himself. He was tasered and then another officer shot him multiple times. That cop refuses to be interviewed by the agency investigating.
The second case involved a 62 year old Muslim man who had schizophrenia, Ejaz Ahmed Choudry. Police on the scene refused to allow the family to calm the man who was locked in his apartment. Instead, a SWAT team broke in through a window and killed him. The video is quite chilling. Actions of the police come near the end.
Bottom line is that most of the time, police do an excellent job but the few cases where they do not need to be reported on and bad cops need to be prosecuted and their employment terminated. But and this is a big but, we need to ensure we are on valid ground when criticizing.