Hoping for genuine efforts to address self-identified needs: Guest Blog from Pat Capponi

What if the archetype of the mad, the lonely dishevelled man screaming and scaring passersby on big city street corners could be transformed into a contributing citizen, not through the efforts of those institutions  which claim to change lives, but through genuine efforts to address the self-identified needs of the ‘ chronic patient’: decent supportive housing that enables tenants to practise autonomy, integrated staffing that reflects the value of lived experience instead of coercing, controlling and crushing independence, role models who can address self-defeating behaviours learned on hospital wards and back alleys, and earned income that relieves soul-crushing poverty

When people first learn of their diagnosis, they aren’t thinking of those advertising campaigns that portray mental illness as seated in the clear-complexioned, well-dressed, gainfully employed condo dwellers, no, they think of that man on the corner, how he is shunned and avoided, and therein lies the roots of prejudice, our word for stigma.  And the public, potential employers, police, educators, even those self-described champions of mental wellness, that is the image they have: that man, tormented by voices, angry at the world, dangerous and strange.

That is the image we must address – not hide from – if we are to be effective at fighting ignorance and fear. Those of us who carry the chronic label, who have been consigned to poverty, poverty much more enervating and all- encompassing than a simple a lack of money, find it very difficult to believe in ourselves  when everywhere we go, agencies, drop-ins, social assistance offices, we are still treated like back ward mental patients.  Since the early days of unplanned and unfunded de-institutionalization, we’ve been the object of other people’s decisions, and borne the brunt of the consequences and lack of awareness of our potential, this plays out too often in our being consigned to  beds in distressed housing or shelters, in the hands of teams that bang on the door to deliver each day’s medication, drop-ins that keep us out of public view and neighbourhoods that reflect our own impoverished existence.

We die 25 years earlier that the general population: stress, malnutrition, hopelessness, depression, isolation, and the inability to affect anything in our environment.  The reality is, many die without ever living, without having any respite from poverty, resulting in too much lost potential, lost contributions

We don’t understand that people need to feel valued, they need purpose, they need to be seen as individuals first, we allow poverty and labelling to camouflage worth, we see only the ‘madness’, the inabilities, the brokenness, and act on the assumption that that’s all there is to the person.

We have had to go it alone for decades, we’ve had to show ourselves what we are made of, we’ve manufactured hope and inspiration where before there was none, created opportunities for engaging with community and social enterprises, reached out to other marginalized groups to better see and understand that not all we feel is related to our diagnosis, which has helped some get out from under the weight of their label.

We know that stigma has a safe home in those staff and systems that make up our world, where we experience the soft tyranny of low expectations that keep us from achieving, keep us from breaking out of poverty and illness towards a life that matters. We compound this tyranny each time we meet without representatives from this population, each time we speak for, act on, avoid, or assume what is needed.

We keep those with mental illness apart, streamed into services ‘just for them’, and that exacerbates the belief that its all about the symptoms –we need to tear down the silos, and funding pockets to bring those on the margins together, like we do at Voices, where   those with mental illness, those with addictions, stressed out newcomers, abused women, meet and learn public speaking, leadership, causation, responsibility and how to shed institutional behaviour.  We have high expectations of participants, which they live up to, often grateful, enjoying learning from one another and about themselves.

There are other bright spots, where we’ve been welcomed, even sought after, to teach, to participate, to guide. Dr. Reva Gerstein was the first, when she endorsed the concept that all else being equal, those with lived experience would get the jobs at the Gerstein Centre, moreover, recognizing that many have not had the opportunity to complete their education, she instituted crisis worker training program geared for new comers and lived experience. At government tables, we are not seen as mental patients, our lived experience and advice is valued, on the Toronto Police Board mental health sub-committee, which I co-chair with Alok Mukerjee, we are valued, and have made significant contributions to furthering understanding and improving training. Deputy Chief Mike Federico is another who has utilized our abilities, even when we do not always agree.

Men and Women from Voices and the Empowerment Council participated in a video created by the police college when they talked about what it’s like when the police come to your door, what escalates situations, what it feels like to be dragged from your home into a police car, handcuffed and afraid. Nothing is more powerful than hearing from those directly affected.

We have looked at the training offered, we have made strong suggestions, and continue to do so.  We know that the first time a police officer meets and confronts a psychiatric patient shouldn’t be in crisis situations, we know that a simple demand that those who wish to become officers, who take college courses to prepare, need to spend a few months working in neighbourhoods where we congregate. So that strangeness is erased, panic quelled, relationships formed.  Our graduates help train medical students and social service workers, nurses and lawyers.

I vividly remember the day, seven years ago now, when two first year psychiatric residents from the U of T met with me in a coffee shop, they had heard one of our speakers in grand rounds, and felt they were not hearing any of our experience in their courses.  As a result, we’ve been meeting once a month in each other’s homes- with first to fifth year residents, to discuss their learning and our take on it, and we are building a cadre of psychiatrists who will have a better understanding of who this chronic patient community is composed off.

Dr. Sacha Agrawal approached me to work with him to create consumer advisors who meet with fourth year residents during their chronic rotation to ensure that those residents see us when we’re off the ward, in our minds, with our hopes and ambitions and struggles.

To combat the early and unnecessary deaths, we send our graduates into drop-ins, to talk about the toll taken by living rough, and family doctors join us to encourage people to sign up for a primary physician.

We should be celebrating and elevating to the public consciousness the extraordinary accomplishments and contributions that have come from our beleaguered segment of society.  Profiling those who have survived extraordinary challenges, from SMI, toxic families, addictions and  street existence, and kept their humanity, compassion and empathy would move the hardest heart.  I tell our group members, this is our Phd, this makes up our credentials.

And yet we find we have a long waiting list of people who wish to be peer workers, because there is resistance from some unions and some professionals who feel that their credentials would somehow be tarnished if they had to work alongside us.

Our presence in the work force would effectively address the roots of prejudice, and the cause of fear-based responses to people in distress,  it would also go a long way to eliminate the resistance to treatment, now seen as a feature of the illness rather than a strong awareness of the social consequences of being labelled.

We need to re-think our approach to the ‘chronic’ population now.

Pat Capponi

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