The Surgeon General’s Workshop on Women’s Mental Health
November 30 - December 1, Denver

Sylvia Caras, PhD

It rained the morning I left, there were road accidents, the traffic jammed, my car service was late, stress, ... but I’d left enough time and got to the airport just at boarding. I sat next to a woman who’d been visiting her family for Thanksgiving; she was 87, good health, "never bored," lots of projects that she hasn’t enough time for completing, ... Interesting for me to meet role models for aging.

On the plane, another older woman and a baby both had arranged for oxygen. I was able to watch the competence of the crew as they made the arrangements, assured the flow was running. (I didn’t find out what the baby’s disability was.)

In the shuttle to the hotel was another woman going to the conference. We had an interesting conversation, but it turned out she, a psychologist, had been staff at McLean, and that evoked not good memories of my time in that institution, and I felt at risk and cautious about my comments, how open to be. I’m glad to know what is going on here and with the federal initiatives, but not quite sure how much a part I want to play. I’m concerned with the relationship of medicalizing difference and where that fits with health. Is "health" identical to medicine, what insurance covers?

I had to call for a bell man to help turn on the lights. The desk lamp switch was in a place even the bell man had trouble finding it, the bed lamp was unplugged, the floor lamp needed a bulb, that required a maintenance man.

125 have been invited, to develop recommendations for tool kits, etc according to an already developed conceptual agenda. Around 100 in a ballroom at round tables that seat 10. I like when the name badge, this one is black and white with a black cord, matches what I’ve chosen to wear, black pant suit, gray blouse; I take the match as an affirmation of being on the right path. I see no visible disabilities, no wheelchairs, crutches, canes, service animals. There is no signing, no material available in braille.

I read the packet materials; I’m concerned that there is an agenda to norm us all, an instance this initiative for women. There have already been focus and leadership groups to develop the themes. The charge now is to spell out actions and needed tools. I have my guard up, am skeptical of the direction.

From my window I see a cluster of Christmas lights and I went for a mile walk and found a lovely bakery and a Starbucks and enjoyed the cold air.

I recognize, greet Kinike, Jacki, Carmen Lee, plus Ann Jennings, Dennis Moffat, Pablo Hernandez, Andrea Blanch, Kathryn Power, Gail Hutchings, Teresa Chiapa.

In the conference packet are price slips for provided food -- to be completed, signed, charged to one’s room; nothing is served, included. (Strict adherence to federal regulations.)

Wanda Jones: Workgroup assignments arbitrary and purposeful (umm, ... contradictory) to ensure a good mix. Concept mapping around "a specific issue that is relevant to the mental health of women and girls is ..." led to 8 domains:

medical system issues

identification and treatment issues

access and insurance issues

sex and gender issues

social stress factors

violence and abuse

mood and anxiety disorders

combine in mobius strip, organized into systemic, environmental and individual factors, all around a core of protective and resilience factors.

Rene Anderson, in recovery from abuse and addiction, has a trauma agenda. She told her story: the day story -- good memories, accomplished, successful family; the night story -- sexual abuse, throughout the family and the past and current generations, extensive health issues. Violence is a social disease, not an individual issue. Change the question for "what is wrong with you?" to "what happened to you?". Powerful presentation.

Admiral Carmona, Surgeon General: grew up in a family of addiction and poverty, dropped out of high school, joined the army, earned GED, .... Father one of 27 children, mother used library to instill value of knowledge, none of her children graduated from high school, sometimes homeless, 12 in a tiny project apartment, "it was the strength of the women in my life that sustained us;" ... "I was a health disparity; the army fixed all my teeth." Even with access, those currently marginalized, still have poorer outcomes. Health injustice. His presentation was very good, very real, very supportive.

(Women are the major purchasers of health care; therefore could a re-energized women’s movement mobilize around health, for broad social change, not just health, where progressives are not now succeeding? Sylvia)

Nakamura, family prone to bipolar disorder, aunt hospitalized and lobotomized, his voice cracks as he tells this: WHO burden of disease data, DALYs, disease, science, comparison of men’s and women’s brain size, ... Suicide rate for African American women is almost non-existent. What is the protection there, the reason? (I wonder about faith. S.) "Environmental enrichment changes the brain." Modern integration of brain/behavior; mind/brain; nature/nurture; structure function.

Power: "recovery can be an expected outcome" for all; it is time! Clear, mobilizing. Link between violence and trauma (her personal experiences as a teacher - her voice, eyes, tear - she went back to school and redirected her career). Trauma-informed services. Ground-breaking women and violence report.

Cheryll Bowers-Stephens: Leading a Mental Health Care System Impacted by a Severe Natural Disaster. LA/Katrina: Lessons learned as it relates to women and children: ... "Women should be considered a special needs vulnerable group during disasters." ... women are disproportionately impacted for various reasons, power imbalance, psychosocial structure, ... lots of other suggestions, ideas, results ....

Workgroup: Biological and developmental factors - 15, 2 women of color, one male Asian, ... - researchers, medical schools, psychologists, ....

CoraLee, NIDA, women and gender research coordinator; Kim, Yale school of medicine: Eileen, pediatric neurologist, children w m h issues biggest issue; Susan, psych, Yale, women and depression; Nadine, psych, Emory, domestic violence; Mary Gee, eating disorders; Carolyn, Yale, depression; Cheryll; Marie Sanchez; Richard Nakamura; Gail Hutchings; Nellie; Phyllis, African American; I said:

My name is Sylvia Caras, I live in Santa Cruz, CA and on the internet, my work has been developing e (electronic) communities for people who experience mood swings, fear, voices and visions. My consumer credential is three years of hospitalizations over six institutionalizations, three times by force, experience with ect, chemical restraints and other disrespectful and unhelpful interventions (no one even smiled; I sensed distancing). As well, I am working on the UN Convention for human rights and disability, and am board chair of CA PAI.

8 factors already defined - our task to choose three of the 8 as priority, then suggest tools/actions. Be focused, practical, focused, concrete, ... Carolyn makes first intervention - causes, treatment, prevention, reorganize; Gail, where’s the demand; why stress the differences?; Phyllis, prevalence, disease; Nadine, children, life span; Nellie, life span; Susan, critical periods; Carolyn, points of high risk;

I spoke about ei/mcs and ending the social permission of violence, which was tabled. I did question "psychiatric illness," the medical model, and suggested "psychosocial disability," culture, Carolyn is smiling at me, others are staring, I start to speak out more, Richard brings us back to science, ... It’s very interesting to see some of the group attached to the list of 8 items and combining and reframing and real resistance to going in any other direction or focusing otherwise on end-product. We have now selected three themes to recommend to the Surgeon General, and now have to decide the message around the theme and the audience. The group thinks the audience is academia, and the message should be framed in multi-syllabic vocabulary and the Surgeon General could give direction to NIH (Zahouni) to emphasize research.

We break to get lunch to bring back. One option is the hotel food set-up, brownie $3, ice cream, $4, box lunch (sandwich and chips), $13, ... Instead I wait in line for a bowl of onion soup.

My workgroup can’t get phrasing for the general public, so are moving on. The conversation keeps coming back to the need for research. It is very hard to sit here and listen to this. The facilitators will put our input into power point and I’ll take notes tomorrow when the groups present. There’s now a plenary wrap-up, what has so far worked, what needs to be watched - "stories level the field." People are sharing what they learned; no one from my group spoke up (there really was a know-it-all tone from the researchers). Then a reception with enough hors d’oeuvres for dinner, I had a lovely visit with Laura Prescott, and when asked by the facilitator if I’d enjoyed our group, said no, and why. However, I felt as if I were a subject talking to an observer, no mutuality. I had another crab cake, felt faint and sat down, collected more attention than I’m comfortable with, was walked back to my room - well-meaning interveners insisted it was Denver’s mile-high altitude (more wrong diagnosis) and to drink lots of water - I was sure it was jet lag, I’m waking up at 2 or 3 AM still, not yet adjusted to the 9 hour time difference, and felt OK in my room. Today at least I slept ‘til 4, and woke thinking how rigid the women in my workgroup had been, how disconnected not just from me but from the other non-researchers in the room, how competitive and really unkind in their styles, cold. I also wondered if they were afraid of "the consumer" and thus unwilling to engage.

Violence interrupts development, changes the brain.

There is an expectation to replace some product from this meeting on Mother’s Day, during National Women’s Health Week.

IED - intermittent explosive disorder <frown>

Kinike is wondering if there is any literature about post-partum mania.

I have been thinking about my own four (wrong) diagnosis and how I have been feeling better and am now self-diagnosing myself with a sleep disorder, now well managed with both nightime and daytime medication, leading to a sense of well-being and even moments, once a whole day, of happiness, just ordinary happiness.

1. Biological and developmental factors

bio-behavioral, lifespan, gender differences in bio-behavioral responses

include environment and trauma,

2. Specific mental disorders

13 specific mental disorders given and group to choose three; palpable tension between those who operate from an ICD informed view and those we operate from other views, plus different agendas

So, instead of choosing 3/13, group organized as:

mood and anxiety across the lifespan
trauma
co-occurrence - other medical, psychiatric, substance

cross-cutting themes:
culture is an essential consideration
promotion of resilience is an essential goal
critical life events can challenge coping

Message:

mental health is essential to health
for older adults: good m h is possible even in the absence of good other health and in the presence of multiple losses

3. Trauma, violence, and abuse

recognize the prevalence, recovery is possible, use a common language, ... very good themes and ideas which I listened to intently so didn’t type - there will be a report which I will provide when it is released; emotional abuse is "soul murder," includes neglect, the "violence of silence," negates existence, the most damaging

4. Social stress factors and stigma

Nothing about us without us. Discrimination.

5. Identification and intervention issues

preventive interventions, screening, empowerment, self-determination, choice; include other health, education, employment, housing, ...; strengths-based, prevention as beginning of continuum of care, services across generations and to families

6. Treatment, access, and insurance

national dialogues needed, non-clinical settings, financial barriers

business case, health disparities, benefits of access and parity (less absenteeism), profile companies in terms of offered benefits, wellness approach, self-care

7. Health system issues

science to service, informed consent prime issues but didn’t rise to top in the concept mapping, so discussion shifted to those on the organizing list, action-oriented

medication issues for women

inadequate provider education about women’s issues, women’s mental health needed, knowledge and also skills, attitudes

family planning, reproductive health education for women with major mental illnesses (going off meds before conception? choosing to not perpetuate the genes? Sylvia)

8. Protective and resilience factors

Women socialized within relationship model; how does that contribute to resilience.
Every girl  (every child) needs at least one supportive, trusting, safe, loving relationship in their life.
Protecting and nurturing our daughter means protecting and nurturing yourself.

Overall, things I thought but didn’t say:

Symptoms of many other illnesses mimic mental disorders. Materials should encourage women to have a complete physical examination to first rule out other conditions.

Many mental disorders, though chronic, are intermittent - people should know this.

When we educate to increase demand before there is a sufficient supply of services, or end-user money or insurance to purchase, when we do that we are making a policy choice to make social change at a cost to the women we would help.

The effects of a toxic environment, ei/mcs, allergies - on behavior and emotions.

stigma as an issue is a cop-out - using the word helps sustain the existing situation - discrimination, prejudice words people understand, words that aren’t unique to m h

we are dealing with symptoms but maybe not causes - bandaids over pus

interventions lead to unintended consequences

relationship of this work to medicalizing difference

If the increase in depression rates stem from a toxic environment, are social, not personal, we are once again victimizing the individual.

I sent an email to Kathryn Power saying that I’m disturbed that we haven’t also talked about the long-term. During the opening panel, Rene noted that violence is a social disease. I have heard exciting things about helping individuals, about hope and recovery, all after the victimization, but I didn’t hear enough about prevention, about making it socially unacceptable to bruise your partner or have sex with your child. Treating is important and the need for treating will increase exponentially until we change social permissions. What initiatives are we doing, can we do, about prevention?

Group wrapup: stretch and self-hug; discussion and synthesis:

add legal system to mix, describe what good mental health looks like, identify innovations
aging, independence (response was about toolkit on seniors dealing with depression, missed the point)
prevention
parity
trafficking
isolation
incarcerated women; women with HIV/AIDS
use the media for good mental health instead of current presentations of bad mental health which display as socially acceptable negative social behaviors (ie Jerry Springer)
caution about exaggerating differences of women
overseas military service (inadequate notice for deployment)
abuse needs secrecy - change don't ask don't tell as a social value
nurture deficit disorder
collect local practices (good practices)
eating disorders
rural women and girls
clinical excellence

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