Interview with Sylvia Caras, December 2008
Many people know Sylvia's website, People Who: www.peoplewho.org. Sylvia Caras is the founder of an 'e community' of people who experience mood swings, fear, voices and visions. She is especially interested in the wide distribution of health and human rights information. She has served on several global and United States boards and committees. She cares about significant inclusion of people with disabilities at every phase, in all matters that affect them; and mindful attention to language that is respectful, graceful, and affirmative.
Our Consumer Place: Has the heyday of progress in consumer participation and initiatives come and gone?
Sylvia Caras: The language has changed. The funding streams have changed. I think the focus could shift from carve‐out to a seamless health care system. Carve‐out is separate mental health funding, people talking about mental and physical health as separate entities, mental health services delivered in separate buildings, drop‐ins, etc. Carve‐in is where there is one door‐ a community service with one seamless funding stream and no separate physical health and mental health. Specialists may be called on later if necessary. I think we should be arguing for transparency and inclusion. Illness and disease take us down a fenced road. Wellness is better as a conceptual starting point.
In the US mental health advocates compete with other under‐served groups for funding. This model is driven by profit and puts social and environmental factors in the background. I regret that other countries are copying us.
The hardest for me was feeling so alone. I learned to re‐understand my life so that my psychiatric experience and my mood experience became my credential, and an opportunity to use my facilitation, organisational and language skills.
OCP: What would transparency and inclusion look like?
SC: Hmm. Well not so much secrecy around mental health issues, less discrimination which could lead to less prejudice and more of us disclosing. When we are at the table here, we do not get respectfully listened to, and then the system proceeds on its own merry way, so we are there but not part of the decision making. I know New Zealand has done much better. I don't know about Australia.
OCP: Is there a place for activism in mental health? What top three areas would you target?
SC: We must reclaim the vocabulary ‐ media, coalitions, local participation in other than mental health community activities - politics, service, sports, ... I think we need to stop presenting ourselves as victims, and stop allowing families and systems and drug companies to use sympathy to generate funds.
OCP: Can you please tell us more about why language is so important?
SC: We think with words. And there are few neutral words. So when we describe a person we choose words that match our own stereotypes and our listeners or readers absorb those words to match their own internal patterns.
For instance, if I say to you I have a brain disease, I am conveying an understanding of my situation as medical, and maybe managed by medication. If I say to you I have problems with living, I am conveying that my social structure, my environment, managing my life interactions is hard for me and I need support.
So Words Matter
Some words also carry political messages. "The mentally ill" is a phrase used by people who endorse forced treatment and managing symptoms with medication. "Consumer/survivor" is a phrase used by advocates who have lived experience with psychiatric disability. So if I am speaking to my local governing body about services for 'the mentally ill' I am conveying a different message than if I ask for services for 'consumers.'
I think we need to understand more about resilience.
And I'd like to reposition mental health as only one part of community health. For example, in a public health media campaign, healthy communities, clean air, green, exercise, diet, kindness, ...
OCP: What would you expect to be different if we lived in a community that embraced people who have mental health problems?
SC: We'd target some other group for exclusion. Groups such as elders, people with AIDs, Hispanics, lepers, …Someone always seems to be at the bottom. In Australia it would be indigenous people I'd guess.
But I think the world is moving towards a different kind of social organising. Some are clinging tight to tradition. But I think we are moving towards a tipping point where a steady maintaining of caring and community might be possible. The alternative is a reversion to mean ghettos of likeness such as gated communities where wealthy people have built homes within a high fence and locked gates. There is an entrance and a guard who must let in guests. We have become fearful of difference.
OCP: If you were asked to give state government advice on how to spend $500 million for mental health, what would you spend the money on? What about if you have $10,000 to spend?
SC: I think caring has been distorted by dollars. I'd use funding to provide internet access for all, access to knowledge, access to others. Everyone has problems in living; not everyone can yet find others with whom to exchange about those problems.