FROM BETSY, WHO WAS IN RIO DE JANEIRO

Lessons from the Professional Fellowship on Women’s Health and Leadership
Betsy Garson Neisner
    Professional Fellowship on Women’s Health and Leadership
 Brazil, 2012 to 2013
    The vast majority of women leading small, non-governmental, nonprofit, progressive social service and health care programs come to their roles from the grass roots of social change. They are largely self-taught and self-motivated. They are generally poorly paid and overworked--and gladly choose to accept their economic lot and overburdened workload because they believe in their cause and know that if they do not do it, no other segment of society will. As a result, they rarely have the time (or money) to engage in national or international collaboration or training.
    This fellowship brought the intellectual growth and inspiration of academia’s sabbatical programs to a group of women who would never otherwise have sought out or been given the opportunity. I did not know that it was an exchange program when I was asked if Cancer Connection would host several Brazilian women from NGOs devoted to improved breast cancer treatment and advocacy. When offered the chance to travel to Brazil, I was reluctant. Cancer Connection has only three employees, two of whom are part-time. Could I justify spending two weeks away? And what would I learn that could improve my own work?
    I have learned that women in Brazil think of universal health care as a gift which they accept passively without question. They need to understand it as an entitlement, a right, and to find new ways within Brazilian culture to demand the best of care, including annual mammograms, breast reconstruction, fully trained professionals, and more equipment so that the time between diagnosis and treatment doesn’t mean the difference between curing Stage I and dying from Stage IV.
    I was surprised to find a similar issue for breast cancer patients in this country. Although the American health care system offers far more advanced and timely treatment, patients here are prone to accept the medical opinions they are offered without question, afraid to request second opinions or to challenge their doctors to work with them as a team, rather than as enlightened dictators. Like the Brazilian fellows who shadowed me at Cancer Connection and those who hosted me in Sao Paulo and Rio de Janeiro, we are fundamentally concerned with empowering women both to ask for better resources from their doctors and to demand that the system, governmental or private, respond to the needs of women with breast cancer and save lives.
    In both our countries, change requires the concerted energy of the group, and individual groups need to coalesce to provide a groundswell for change. To have influence on the larger system, you need to create an army of individuals who can influence the centers of power and money, because both are needed for change.
     I learned from my Brazilian colleagues new ways to celebrate the power of the group. One of the most powerful learning experiences of my stay was a rally organized by the Pink Ribbon Foundation in a “pacified community” (slum neighborhood) to educated women about breast cancer. This small gathering took on the gaiety of a block party with “people’s music” – samba - spreading the word outward from the core of the neighborhood, educating and countering misinformation, fostering discussion, welcoming questions. To have influence on the larger system, you need to create an army of individuals who can influence the centers of power and money, because both are needed for change. Through this one pink-balloon rally, samba dancing and social interaction, I saw survivors, families, neighborhoods and political communities merging to maximize the opportunities for education and political change.
    I will continue to work with the women I met in Brazil as they bring to fruition the projects they are creating. The lessons I was able to share included ways to lobby legislators for systemic change and to develop and nurture relationships with people in the business community who can provide money, goods and skills to solidify the work of a new program. In addition, I have found a community of women across Massachusetts willing to collaborate with each other to accomplish more than each could do alone.
    My recommendation to ITD is to provide the American fellows with a brief overview of the history and economic environment of the new culture they will experience, or at least a reference to a good book on that country. Americans need to avoid the easy trap of comparing a static present in the new country to a static present in the USA. The trajectory of Brazil’s social, cultural, political and economic development is far more important to our learning experience than a cursory comparison of achievements. How steep was the curve of progress? What were the goals for the future? What were considered the important standards to meet and to exceed?
    The fellowship was a tremendous learning experience--about Brazil, about women’s health, about leadership strategies, and about transforming our own nonprofits in this country. ITD created a superb program with unlimited potential for future collaboration between Brazil and America and within each country.

FROM POLLY IN PORTO ALEGRE
A conundrum for January 19 and 20, 2013

Old beliefs turning upside down
New beliefs emerging
Like a sun setting, newly viewed, bursts rose red in western skies
While on Puerto Alegre's east facing shore, a new friendship blooms
How can this be, east is west? West becomes east?
Fellowship magic working to make change possible.

FROM POLLY IN PORTO ALEGRE
for Thursday and Friday, Jan 17 &18, a limerick for a change

There once were US fellows from CT and Mass
Who ventured to São Paulo but alas
ITD made them go separate ways
where they experienced fabulous days
with Brazilian fellow Fellows, en mass

Many sites to be seen
Women's Health, the main scene
they're looking and talking
Listening and walking
Will they ever return to where they've "been"?

FROM HILDY IN BRASILIA
January 17
Today was extraordinary here in Brasilia. I went with Joana--a breast cancer survivor at 30 years old--to visit her plastic surgeon at the public hospital. Joana was inspired by her doctor to take the initiative and found an NGO that supports woman getting breast reconstruction  following breast cancer surgery.  This surgery has been by no means automatic. Far from it, I learned that the public hospital system here is very subject to political connections. The head of the hospital has been replaced several times in the past 3 years-- The doctors who have more political support are able to usurp surgical rooms, anesthesiologists and nurses so that the reconstruction surgeries are denied or delayed. As it is there are significant delays for women-- the surgeon we met with said he could do several reconstruction surgeries per week but some times he sits with nothing to do because there are no operating rooms. He was very discouraged after 28 years as a surgeon and was hoping to have an early retirement. I felt so frustrated for him dealing with the politics of this surgery and the anger many other surgeons show him who are happy to do as little surgery as possible.  When we finished this visit, the doctor called us in to see the outcome of a breast reconstruction he had finished (the final surgery to create a nipple was yet to be performed). The woman was so happy and Joana showed the woman the results of her surgery and the elaborate tattoo of flowers on her breast that she had done. --When we left to head out of the hospital I was filled with tears and emotion  How horrible to wast the talent of a great surgeon and also make women wait so long for a surgery that can restore their self esteem.

---I think about all of you and what an exceptional experience we are having.  My love to you all. 

FROM NOEL IN FLORIANOPOLIS
When I arrived yesterday and spent the evening wrestling with wifi and trying to make some sense of my exhaustion, I couldn't have predicted that today would be so wonderful.

The day before, in the office of AMUUC, Jurema had played a video for me from the Lacos de Amor campaign, which is a TV campaign promoting adoption. We saw one of the videos from the campaign, which featured a girl of around 10 and her adoptive parents. Even without understanding the Portuguese, I fully understood the ad. They had adopted her as a baby and had two elder sons. They love her and are so proud of her, and they can't imagine their lives without her. I admit tears were welling up in my eyes, it was very well done. Jurema had found an organization affiliated with this campaign and had made an appointment for us to meet during my stay.

Today, Jurema, Carlos and I drove down to a beach where Marni's family and Melissa have beach houses. They had agreed to meet with us there so they could learn about Freinds of Children and we could learn about GEAAFA and also about the adoption system in Brazil. They are the President and Vice President of GEAAFA, a volunteer organization that they started 3 years ago to help people with the adoption process. They give support for this sometimes long and bureaucratic process, and include support for after a baby is adopted, a time that is not recognized by the laws but is certainly a time of increased need for support.

We sat down at their table, Melissa's husband was there too, and various adults and children were walking through on their way to or from the beach. Marni mentioned that her daughter, who was adopted, was at the beach.

She also told us about her paid job, which is for a children's shelter. It is called CETE (Center of Education, Training and Hope). They have the capacity for 20 children, who arrive between the ages of 0 and 6. CETE takes care of them and tries to place them in adoptive homes. The concept of foster care is not used in Brazil. Children live in orphanages or are adopted. I couldn't get a full understanding of the different ways that children end up going into an orphanage. The only temporary placement for a child is with a prospective adoptive family, who has an opportunity to take the child temporarily before committing to the adoption.

During our conversation, Melissa's phone rang, and she quickly passed it along to her husband to answer, giving him paper to write anything down. We kept talking, and her husband returned to tell her something. She began screaming with joy, and everyone around also began to celebrate. She had just been told that she got a baby! It turns out that they had been waiting for two and a half years to come to the top of the list of adoptive parents. Melissa had survived ovarian cancer as a young woman and could not bear children, so they had been waiting. Today their dreams came true. Their baby is 45 days old, and perhaps not coincidentally, she has been at CETE nearly since she was born. Marni told Jurema that when the baby came in, another colleague of hers said she thought perhaps it was Melissa's baby. They joked about taking very good care of her for their friend, but they didn't say anything to Melissa because once before she had almost gotten a baby only to lose her to another waiting family; they didn't want to get her hopes up in case she really wasn't going to be next. But they did take a little bit of extra care to take many photos of her first 45 days, and to make sure all her paperwork was perfect and ready. Melissa excused herself to change and get ready to leave -- she was going to get her daughter this afternoon.

We talked a little more, and discovered that in fact Marni is the mother we had seen on the TV campaign the day before. No wonder she seemed familiar -- she is a celebrity! As we were leaving, Marni's daughter came back from the beach and was congratulating Melissa and her husband. What a treat to see her in real life, to know one small moment of their beautiful life together, and the continued happiness of their close friends and family. What a perfect morning. It's surreal to realize that as I write this, Melissa is surely home with her baby Emanuela now, on her first day of motherhood.

Of course, our meeting ended with many bejos and congratulations, and then we headed to a magnificent beach for a short visit. But nothing could top the morning!

I thought you all might like to hear about this spectacular day. Missing you all and sending love from Floripa.

FROM POLLY IN PORTO ALEGRE
getting more Haiku-ish for Wednesday, January 16, 2013

Winds lift and scatter
Four directions matter
Seeds sown seek openings
Hearts? Minds?

FROM POLLY
Another Haiku(sorta) for Tuesday, January 15, 2013

Numbers define BUT can and do fall short or long
We're 14 BUT Mr. Martinelli meets only 13
Bologna counts as half a kilo BUT has zero takers
One, two three mastered BUT one, two, three four came next
Five gathered for rehearsal BUT the other smarties "packed" it in
Five? Who was the fifth?...Numbers can fall short or long