By Kathy Mochnacki
Recently, I was woken from sleep by a phone call. It was my son calling from his supportive housing residence. He could not locate his identification cards and was yelling at me in a loud voice asking where they were. I knew that he needed the ID to open up a bank account the next day and referred him to the program administrator who had kept his ID in a safe place. I checked with the program administrator next day, who said that he had called her and his tone had been quite reasonable. As a rational person, I recognized that the loud angry voice that I had experienced came from the heightened anxiety that he felt because he feared that he may have lost items which were vital to him performing the necessary step of opening up a bank account. As a mother caring for a son with a serious mental illness, it has been a common experience to be the brunt of such outbursts over the years. I do understand, however, that my son’s outbursts of anger come from a place of intense anxiety.
But here is the problem. There are so many professionals in our current mental health system, who are about my son’s age, but do not have a serious mental illness, whose method of communication is also distressing. For example, a male nurse at a local Emergency Ward, in response to my inquiries asked “How old Is your son, Mrs. Mochnacki?” I guess he thought I was being an overprotective mother. His sarcasm came from a place of ignorance, as he was unaware, and did not bother to find out, that my son’s diagnosis involved memory problems and other challenges. The same hospital gave me exemplary service when I was treated for breast cancer. Perhaps their cancer care department could educate some in the psychiatric department about how to appropriately treat patients and their families.
Often our difficulties are with bureaucrats whose heightened sense of self -importance, an unattractive quality coupled with an unacceptable ignorance of the symptoms of mental illness, makes for disaster. A case in point is the “Senior Director of Transformation and Strategy” who established the vision, mandate, and principles for the development of a Mental Health and Addictions Crisis Hub while “securing government approval for a ‘transformational’ model that introduces coordinated, wrap-around care, with seamless transfers, and integrated services”.
Problem is that many people with serious mental illness will not use this Hub as they have the symptom of anosognosia which means that the person does not have insight that they are ill. Anosognosia or lack of insight is the principal reason those with schizophrenia and bipolar disorder do not take their medication and do not seek care. The opportunity was there for this individual to find out about this symptom, as I sat on a Council which he headed for three years, but he chose not to find out. Another bureaucrat from the same Council told me that the College of Physicians and Surgeons of Ontario (CPSO), a regulatory body, would have to determine that anosognosia was a symptom of serious mental illness! It is not CPSOs function to determine symptoms of diseases.
It may be time for some mental health professionals to look in the mirror and acquire some insight of their own. Recently an Ontario Health Team was challenged to find family representatives for their leadership council and had learned that family caregivers, in past councils, had felt condescended to. After becoming aware of this fact, they then issued a recruitment flyer to solicit applications for positions for family caregivers that had been created on their Leadership Team. The flyer stated that successful applicants will be “matched with a point person/ mentor to successfully support you in your role”. Why do we need support? We are articulate adults who have valuable information to share and have done this for years as numerous government policy papers will attest to. Is not the shoe on the wrong foot? Should it not be the professionals who need to learn how to listen? By indicating that we are the ones needing support is just another example of condescension. Positive change will not happen when families are kept in the stepdown position.
Recently, I complained to the local consumer survivor organization about the wording of a terms of reference of one of their programs. It said “we do not define force and coercion as help”. I asked whether this was a reference to involuntary treatment and explained that many of the families that I knew had depended upon this policy to get needed help for their loved one. The executive director wrote back and did say that involuntary treatment had worked for some but a later letter from the Board of Directors refused to change the wording even though the threat of the availability of involuntary hospitalization traumatizes families of those with serious mental illness who must rely on it to protect the rights of their loved ones to attain wellness and be alive.
In answer to my first email of complaint, the executive director states: “The Peer Support movement ………was founded on the need for Consumer/Survivors to advocate for rights protections and positive change in the healthcare system and beyond, as historically, people with ‘serious mental illness’ often had their rights stripped from them. The pioneers of the consumer survivor movement have been advocating for positive mental health care reform for decades, and thankfully we at least now have the system using the language and philosophy of ‘recovery’ and recognizing and embracing the value of Peer Support for example, rather than the antiquated belief that people with lived experience all have a life-long condition which must be treated ‘professionally’ and clinically and that medication for all of us, is non-negotiable. That’s simply not the evidence, and as a result the system has seen positive changes, moving away from this and bringing in more holistic and diverse views and understandings.”
Recently, emergency services were called to one of their programs. According to an eye witnesses, this is a common occurrence. A woman in psychiatric distress was strapped screaming to a gurney and taken to hospital. Where is the human dignity in this? Is this a good example of the effectiveness of “Peer Support”? This sad spectacle of human suffering fuels stigma and public anger against all of us including families who are supporting a loved one with a serious mental illness. The crisis that this poor woman experienced may have been prevented if she had access to “antiquated” treatment and the availability of medication.
The consumer survivor movement speaks for an articulate vocal minority blinded by a philosophy which sadly impacts upon us all with such profound negative consequences.
One of the popular messages coming from the mental health system is the call for “parity”, as people in the mental health system demand equal funding for mental health care; equal, that is, with physical health care. But what they have not appreciated is the fact that physical health care involves physical health literacy. There is an acceptance that there are many physical illnesses each with their own set of symptoms. In contrast, the mental health field does not have this quality as we hear references to the euphemistic “mental health issues” but little reference to terms such as “schizophrenia”, bipolar disorder, or major depressive illness to name a few of the mental illnesses. Too many employees of mental health agencies have no training in mental illness and this can be a risk factor which causes hurtful judgements, and fuels systemic attitudinal barriers. Families are often blamed for their loved one’s mental illness as some of these employees have had educations influenced by psycho dynamic theory which puts emphasis on early childhood experiences.
Change comes from the ground up. Professionals could serve us better if they took the time to appreciate the challenges which our loved ones have faced. My son, who for most of his childhood suffered from undiagnosed Asperger’s Syndrome. That is a disorder which involves a deficit in understanding social cues, so he experiences intense anxiety. One time in Grade 3, he was with his twin brother in an exercise about social skills. He was asked who his best friend was in front of all the other classes in the gymnasium where this exercise was held. He finally blurted out that his best friend was his twin brother who was sitting beside him. The presiding teachers were not happy with his response and chided him to come up with another answer. After a while of this taunting in front of all the other children, he finally blurted out “F—Off”.
I was summoned to a dressing down by the same teachers and my son was given a two week suspension.
Isn’t it time, that we cut with the crap, and start taking mental illness seriously? We need mental health professionals who take the time to find out about the symptoms of the different mental illnesses that makes life so challenging for our family members? Take the time to listen to families and read and follow the recommendations of those myriad of reports that have been gathering dust over the years. The first recommendation of the three decades old Ontario Government Graham Report advises that we “place priority on providing support to individuals and their families who experience serious or prolonged mental illness or impairment”.
I invite mental health professionals to work with families to honour this recommendation.
Kathy Mochnacki is a registered social worker and Chair of the Board of Directors of Home on the Hill Supportive Housing. She is the mother of an adult son with serious mental illness. Home on the Hill can be found at