Wednesday, 16 July 2008

Community Cafe, 'Is Life Worth Living When You Have a Mental Illness?"

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Why I Am a 'Consumer' by Susan J. Katz

Why I Am a ‘Consumer’
by Susan J. Katz1
My first experience with the term ‘consumer’ was in 2006, 21 years after I was first diagnosed with a mental illness. I had just moved to a new city and a new health authority and was now receiving care at a community mental health team. My new care team introduced me to this term with the disparaging remarks that ‘everyone hates this word, but we’re stuck with it; it implies that you are buying your services, like groceries, which you are not’. So why use it? I thought. Now two years later, always keeping that conversation in mind when I was asked to identify my role in the mental health system, I have come to love the idea.
The rapid journey since that first encounter with the term ‘consumer’ has been like riding in a car on ‘Mr. Toad’s Wild Ride’ at Disneyland, where all sorts of alternate suggestions and endless opinions, arguments and discussions about them, became the inevitable digression at any meeting of persons with a diagnosis. People hated being labeled ‘consumers’ because they are not shopping for laundry soap; because they know they are not offered any options in services even if they did wish to comparison shop like a true consumer; and because the term has developed derogatory and stigmatizing connotations, much like the labels it was created to replace, such as ‘mentally ill’ or ‘insane’.
The problem remained, what shall we replace ‘consumer’ with? A few recollections by peers and my own literature search have turned up some alternatives. Here is a list of the most common ones and a summary of their arguments:
• Consumer: this term was promoted by mental health activists themselves during the Disability Rights movement era of the 1970’s and was intended to empower service users and instill them with the authority of choice in their care. In 2002, the B.C. Ministry of Health defined ‘consumers’ as: “people who have direct and personal experience of a mental health issue and who have used or are using the resources available through the private or public mental health system.”2 , including those choosing to be treated by private psychiatrists, psychologists, general practitioners or through alternate therapies.
• User: only refers to those actively using services and widely refers to people who have difficulties with substance abuse.
• Service user: again, refers only to people actively using services and many people with a diagnosis do not. Also, in reality, services are not freely used, but are supplied only after there has been a needs assessment by an assigned care manager. Interestingly enough, many people, especially men, feel that the term ‘service user’ labels them as a welfare dependent, and therefore a drain, on public resources and strips them of their sense of self-worth.
• Survivor: can refer to surviving the mental illness, or to surviving the mental health system. In the latter sense, it has a very negative and inflammatory message, and as such, erodes the potential for improving relationships with service providers. Also, borrowing this term diminishes the experience of Holocaust survivors, for whom it was originally created.
• Patient/mental patient: the word ‘patient’ comes from the Latin root ‘one who suffers’ and connotes a passive supplicant seeking relief from an expert. This is contrary to the collaborative process persons with a diagnosis desire.
• Ex-patient: refers to persons who are no longer using services.
• Client: this is the most preferred term in any survey of terminology; however, the Latin root is ‘one who depends’. The power of self-management and healing becomes dependent upon someone else. Usually clients pay for therapy, which in reality most persons cannot.
• Victim: implies person with mental health difficulties has been attacked or is defenseless and is contrary to the need for personal empowerment.
• Psychiatrised: meaning a person has been treated by a psychiatrist; a term I have never seen and has undesirable associations of receiving treatment unwillingly imposed.
• Receiver: similar to user; does not address what is received, and invites shame as all euphemisms do
• Person with a psychiatric disability: well-liked, but many people do not consider themselves disabled and lead what they feel is a meaningful, fulfilling and functional life.
• Person in recovery: is becoming popular, but can be mistaken for many other types of recovery journeys, most commonly, substance abuse.

Over the last two years, I tried out each new term with; they all seemed better than the ‘consumer’ word, at first. Then I tried them out with others with a diagnosis: No one term seemed to be inclusive of every person in recovery. In the meantime, I began to acquire the confidence and voice to create my own preferred care program. Through peer-led programs I learned how to self-assess and manage my symptoms, and part of that self-management was to develop the ability to request services that I knew were right for me. I gradually recognized that this is what consumers of any product do, and that being an informed consumer was a good thing.
I began to become comfortable calling myself a ‘consumer’ again, but so many of my peers were still angry and skeptical by the false promise of this term. They said, we are not consumers because although we may want to be, we are not allowed to choose our services; there are no choices, and compliance is still the only option.
Hope for change is on the way. Hope is the cornerstone of the widely adopted psychosocial rehabilitation model, which emphasizes collaboration rather than compliance. One sign of hope on the horizon comes from an article by Janet Meagher3, in which she calls to the reader:

“Our dream was to expect that mental health services would provide their services to meet a range of reasonable needs which would respect the rights of the service user, and, that these individual needs and rights would be adequately protected by regulations, standards and laws. At the time the concept seemed somewhat fanciful and quite unattainable, but something to aim for and work towards.
Today, we have achieved that fanciful dream, at least on paper, but there remains a need to see that dream fully functional. Human Rights protection, National Mental Health Service Standards and National Mental Health Policy, consumer and carer participation and partnerships were the stuff of those dreams and now do exist. We need to ensure that they become more than that, that they are fully enacted across every health service and in every mental health activity.”

What can consumers do to ensure the dream? Create and participate in opportunities to be a voice expressing what options we would like to have for our recovery process, just like any other consumer driven market product. True, most persons with a diagnosis are not able to purchase their services, but the providers are aware that the best, most cost-effective services are the ones that produce results. And the best results are ultimately the ones we choose for ourselves through informed and collaborative decision-making.
We all win when we become true consumers of mental health recovery services.
  1. From: Vancouver/Richmond Mental Health Network Bulletin, Fall 2008
  2. British Columbia Ministry of Health 2002 Best Practices in Mental Health and Addictions: Consumer Involvement and Initiatives p. 7
  3. From ‘Australian Mental Health Consumer Network’ http://amhcn.org.au/?m=24 What are you? By Janet Meagher