Presentation, CIMH Need and Prevalence Conference, June 19, 2007
Sylvia Caras, PhD
Good morning. Ive been thinking for several months about what to say this morning, really stumped by the assumptions and focus of the conference title and our specific topic.
Since April, Ive been asking myself: What does prevalence mean? What is the mental illness we are looking for? Disparities between what and what? Whose need? Need for what? I hardly knew where to begin.
I do know that results are determined by how we frame a concept in our minds, what words are used. When studies are funded, the unexamined terms of the search can be the determinants. Those words in which we think about things shape our understandings. The very words mold how you, and I, and those with whom we talk, perceive people who experience mood swings, fear, voices and visions.
There is a shared consumer value base of self-determination, dignity, hope, reciprocity, witnessing, spirituality, diversity, ... and personal competence is connected with a desire for and a willingness to take public action.1
So, I want to know what are the values here. Are we asking about our poverty, about our increased mortality, our lack of education and lack of employment? Are we asking about disparity from a norm, a norm set by whom, or disparity from a population, defined by whom? Who are we counting? There isnt enough transparency.
Today, I choose the word need to explore, and ask need for whom, for what. The language of need is the language of paternalism. It makes room for beneficence and its cost is passivity and dependency. Its perspective is stale; it asks the wrong question. Instead, policy could use language that develops agency, language that strengthens personal power that enables and emancipates, language that minimizes medical and legal paternalism. Policy could look from the point of view of the individual's own life plan and purpose to provide a multiplicity of means for user productivity and user community participation.2
Despite my own wish to change the subject, I did poll a California client email list.3 Theres a concern that like everyone else, clients want to meet our basic needs, jobs, shelter, clothing, food, timely access to holistic health care and disability supports, social participation, access to information. "People want to do something meaningful and fulfilling with their lives, not go to groups or live in facilities (Shwe).3" While we still are in the system we want choice and participation that makes a difference in all decisions that affect us. We echo the motto of the disability community "Nothing About Us Without Us."
Charlie Curie used to say what each of us needs is a job, a place to live, a social life. And please note he put jobs first and I agree. If housing is first or services are first resources run dry, people get stuck, maybe medicated, maybe rocking on a board and care porch. A real goal is jobs first, contributing value. Then there is more motivation for client and provider for what is required to get and keep a job, and medication, even housing, becomes a support towards community inclusion.
Thats the short answer to the posed question.
But let us not forget we are talking about a system in shambles. Looking at need is a holding action4 which maintains the current paradigm and power hierarchy.
Concepts of person-centeredness, recovery, wellness ... were beginnings, but where are the alternative structures and models and paradigms?
Today we still wait for acuity, then fix the broken part. We are medicating difference. Where is the holistic model of healing? Where are the transformative practices, the transparency, the access to knowledge for all?
Where is the new perception of people who experience mood swings, fear, voices and visions, the understanding of identity as more than a diagnostic label, the understanding of health as a seamless blend of the physiological, emotional, environmental and spiritual? What is the impact on the whole? Where is the new vocabulary?
Healthy lifestyles in healthy communities can reduce the impact of risk factors and create local peer support.
But we are using words that dont work. Or rather they work for the system and create a wall between the policy and the people. An aspirational value of public health must be the opportunity for each person to have a safe and valued place in order to achieve their own promise. Thats whats not prevalent. Thats whats needed.
2. Caras, 1999
3. firstname.lastname@example.org, 56 subscribers on May 15, 2007; email@example.com, 68 subscribers
4. Macys model of transformative actions. Joanna Macy and Molly Young Brown, Coming Back to Life: Practices to Reconnect Our Lives, Our World, cited in Donald Rothberg, The Engaged Spiritual Life, 2006, Beacon Press, Boston
www.peoplewho.org June 20 2007