Toronto: Helping Families In Crisis

Icarus collective member Will Hall was invited to speak at a 150 year-old psychiatric hospital in Toronto Canada with a group of family members about how to help their relatives going through mental health crisis, sponsored by the innovative Family Outreach and Response agency.

You can listen to a Madness Radio interview with Krista MackKnnon of FOR here: http://freedom-center.org/madness-radio-2007-05-16-krista-mackinnon-family-advocacy.

(Some writing about my Argentina trip is coming soon — until then, here’s a report of a teaching opportunity I had in Toronto Canada last week.)

Families are ground zero in mental health. When someone goes into crisis, withdraws from reality or starts to experience too much of reality, the family is often there right along with them. Parents and siblings are either directly involved, such as caregivers or a source of shelter, or they’re circulating around as memories and voices in the person’s head. Under the stress of someone driven mad, or under the same stresses that drove the person mad to begin with, families are usually in some kind of crisis themselves, though they may be ‘functioning’ and passing for normal more than the person who is diagnosed. Over the seen years I’ve been a peer counselor and human rights advocate in mental health, some of the most challenging and rewarding moments have been meeting and working with the family members of people in the system.

It’s rare for families to get what they need. In the US, we have the organization NAMI, funded by pharmaceutical company money and following a corporate psychiatric agenda of disorders, labels, force, drugs, and paternalism. Families in crisis look for help, and receive a brochure from the hospital pointing them to their local NAMI chapter. Very well-intentioned people are funneled into a narrow understanding of what is going on and a limited and largely failed approach to dealing with it.

NAMI chapters are a mixed bag, some are better than others, and some do provide a lot of real help to families. NAMI also advocates for some positive legislative change, such as increased funding for homeless services. Mostly however NAMI support for families in the US is a disaster. The focus is on medication compliance, following what the doctor says, and reinforcing the mainstream message of what mental illness is, with NAMI groups spreading the party line and helping members figure out how to better police and control the diagnosed person. That ends up harming people more than helping them. Patients are trapped in the system long term, people die early, stigma and discrimination are worsened, and the real needs of people going through madness are left unmet while pill companies continue to make huge profits.

Usually this story now turns to the need for activism. Facing the dismal services of the mainstream, Freedom Center and the psychiatric survivor movement are loud and vocal in calling for alternative services and different kinds of programs. Not surprisingly, many family members don’t want to hear anything critical of the system they put their faith in for years, and Freedom Center has even been attacked by a local NAMI chapter. Many other US family members I’ve met, however, are very open to the message that the system is failing and we need compassionate and holistic alternatives: there’s just very few places for them to turn to.

There certainly is this same need for system change in Canada, and good services are also rare there, but it’s exciting for me to report that in Toronto there is a family support agency alternative to NAMI that actually helps people in real and effective ways. And it’s even well-funded and growing because of its years of success helping turn people’s lives around. (Toronto also is big on Kit Kat bars…)

Family Outreach and Response is a city service agency where families come for support and advocacy dealing with madness. FOR visits homes, counsels family members, offers advice and ideas for navigating the system, gives tools and training, and gets actively involved in helping families grow and change when a family member is in the psych system or in danger of going into the psych system. Hospitals and other agencies call FOR in to deal with families in distress: when a son is in the basement and hasn’t left for years, when an uncle goes in and out of jail during episodes of mania, after a daughter has a suicide attempt, or when a parent is acting in ways considered bizarre or crazy.

Last week FOR invited me to help lead a Toronto seminar for 12 family members. These parents and siblings have been told by the system that their relatives have biological illnesses that will need to be managed and cared for long-term. A big part of FOR’s work is to reverse this myth and show that people who go through even severe crisis have the potential to recover completely and move on with their lives. FOR helps families become allies focused on self-determination and respect for the individual, and is strongly against force, psych abuse, labeling and the medical model. I joined Krista Mackinnon, a FOR worker, and Greg Kim, staff member at the main city mental health agency, in telling our stories and explaining what it took for us to make it out of crisis.

We met in the enormous and imposing 150 year old  Queen street Center for Addiction and Mental Health. CAMH is Canada’s largest psych facility and one of the biggest, if not the largest, in all of North America, formerly known as the Provincial Lunatic Asylum. Bars on the windows, fluorescent lights, linoleum floors: the familiar prison-like atmosphere that itself carries huge lessons of its own control and disease that indoctrinates the thousands of people who come here looking for help. Toronto is one of the most diverse cities in the world, and the group we’re meeting here tonight is mixed European-Canadian, Asian-Canadian, and recent immigrants, representing several languages (FOR has outreach workers who speak Tamil and Somali, and Krista speaks American Sign Language).

After being introduced by Karyn Baker, FOR’s director and a shining light in the international movement against force and the medical model, Krista told us her heartwrenching story:

Krista was a troubled teen who started taking a lot of LSD and pot, and found her mind unhinged from ordinary reality and her life flooded with messages from God about a divine destiny. She grabbed her guitar at age 16 and ran away from home to help foment world revolution, but ended up forced into a psych hospital. Violent restraints and confinement left permanent scars, and at 27 Krista still isn’t able to tell her whole experience because of the power of the trauma she endured.

Her treatment included psychiatrist Doctor Spinner making her repeat over and over “I have delusions of grandeur… I have manic states when I am speaking too quickly …” to convince she had an illness and needed to take her medication. She remembers that the best thing that happened to her when she was locked up was a friend visiting and saying “you’re not crazy, you’re just smarter than everyone else and they don’t understand you.”

Krista left the hospital on so much lithium her friends complained she was numb and blank. Her parents were trained to focus on medication compliance, but despite this surveillance and control, Krista was able to stop taking her meds on her own. Every time she needed to go in for a blood test to check her lithium levels for the dangers of toxicity and to see if the levels were high enough, she would take a large dose right beforehand to convince everyone she was still on the drug. The trick worked for an incredible 2 years. Before she left for college, she revealed to her parents, who could no longer threaten to kick her out of the house, what she had done.

Today Krista is a successful leader in the psychiatric survivor movement, is in demand as a speaker and consultant, has two healthy kids, and just started a web-design company on top of her work with FOR. To heal some of the trauma she endured, Krista contacted the psychiatrist she had in the hospital, telling her how she had left the system behind and no longer takes medications or sees herself as a mental patient. Despite being faced with the reality of Krista’s recovery and her career, and without having seen Krista as a patient for years, her psychiatrist told her this on the phone: “Krista, frankly I am concerned for your safety. You have a mental illness that requires you to take medication as a preventive measure. You need to go back on your medication.” Every day that Krista does her powerful work with families, visiting homes and helping people avoid force, find alternatives to drugs, and look beyond the medical model is an act of defiance against this psychiatrist and the system behind her. Krista’s psychiatrist, is a glaring example of how defensive and delusional professionals can be when they refuse to admit they are wrong.

— That’s inside CAMH — they are planning on tearing it down, and rebuilding it.

I’m more familiar with Krista’s story because I interviewed her for the radio show, so my account of Greg Kim’s story is more of a sketch:< Greg went to college and just started losing interest: started sleeping all the time and staying in his room, not talking. Everywhere he looked he saw ways to die. When he ended up in the hospital, he wasn’t informed of his diagnosis, but thought he was just depressed. He tried to go to the wing marked “mood disorders,” – but was then redirected to the wing marked “thought disorders.” He had a diagnosis of schizophrenia, and along with it the package of message that there is no cure, you cannot recover, and have to learn to manage your symptoms. He said that after being forced onto drugs and in restraints he quickly learned the lesson many patients learn: never tell the truth to staff, always tell them you are not suicidal, that the medication is helping, and that you are getting better, or risk further violence.

At one point his alienation was worsened when he was one of the few english speakers in a Quebec french-speaking hospital, and being in research programs on Asians and mental health was also alienating. A turning point for Greg was when his friends saw him put in restraints, tied to a bed. It was so clear that this was traumatic violence that his friends made a commitment to help him stay out of the hospital. At their apartment Greg was accepted in his withdrawal and madness states, and his friends talked with him about what he could do instead of going back to the hospital. He went a few times to the Gerstein center, a crisis house that doesn’t use force. Gradually he started to pull his life together, learning different wellness tools and relying on the acceptance of his friends. Today Greg has an influential position as Consumer Participation Initiative Coordinator in the Toronto CAMH system, helping to promote the recover message and create a new vision of where mental health care should go. His career as a patient advocate even put him in the ironic position of working alongside the very psychiatrist who forced him into the hospital.

My presentation echoed the same themes of Krista and Greg. I was told my problems were biological, and no professional took an interest in my history of trauma. Managing my symptoms and taking medications were my best options, and the violence of my hopspitalization was euphemistically called “involuntary treatment,” “seclusion,” and “restraints” — Newspeak for  kidnapping, solitary confinement, and being tied down. (You can read more of my story on the Freedom Center website.)

The family members in the room were astounded to hear these stories. They had never met people with the same diagnoses as their sons or daughters who had come through to a place of wellness. They had never gotten accurate information or a message of real hope from the mental health professionals they had turned to for help. A lively discussion developed, with people asking us if we were really as bad as their relatives, what helped, how to find good psychiatrists, how to get off medication, the role of nutrition, and how to find the patience to stand by someone you love who is not changing the way you want them to.

After the event family members stood around talking with us, reluctant to leave and eager for the next seminar. Karyn, Greg, Krista and I went out for drinks on Queen Street to have a compelling and insightful discussion about our work and how to best help people. Once again it becomes clear to me that it’s time for the US to start learning from the rest of the world, instead of thinking we’re the center of the universe. It was inspiring to be in Canada and to be talking with colleagues who are no longer seduced by the pro-force, pro-drug, and pro-disorder model that so many people, even intelligent and thoughtful people with otherwise good politics, are under the spell of in the US.

Greg, Karyn, and Krista are successful professionals working day to day in a big urban setting with patients in and out of hospitals and their families, struggling constantly with the hardest issues of suicide, homelessness, prisons, drug addiction, and self-destructiveness that often go along with madness. They are dealing every day with the most difficult situations, situations that mainstream professional say “require’ mainstream treatments. And they are against forced treatment, pro-self determination, and don’t buy the myths surrounding medication and labels.

Family Outreach and Response is a living example that the values of the psychiatric survivor movement are a viable and real direction for the future mental health system. We should embrace those values and raise our voices loud and clear for change, and not let the fear of being different or swimming against the mainstream hold us back. In time, the changes underway in Canada can take hold everywhere, but how soon that happens is up to us.