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Byllye Avery, MEd

Byllye Avery is the founder of the National Black Women's Health Project.

Correspondence: Requests for reprints should be sent to Byllye Avery, MEd, National Black Women's Health Project, 600 Pennsylvania Ave, Suite 310, Washington, DC 20003.

	ABSTRACT

TOP ABSTRACT INTRODUCTION HOW I LEARNED THE... BLACK WOMEN NEED THEIR... RUNNING WITH IT WHERE WE ARE NOW

 

Frequently, we take the "public" out of public health and allow the practice to become extremely narrow, limited to experts telling the public what's best for them.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION HOW I LEARNED THE... BLACK WOMEN NEED THEIR... RUNNING WITH IT WHERE WE ARE NOW

 
IT TOOK THE DEATH OF A person I loved and thought was healthy to turn my attention to the issue of health. In 1970, my husband of 10 years suffered a massive heart attack and died. The shock of this traumatic event on my life at the age of 33 has had a lasting effect on my own health and contributed to my resolve to help others through health education. In my numbness, I started looking for a place to talk about what happened and discuss how I could ensure that it didn't happen to others.

In the midst of my despair, I came to understand that our health is our most important asset, and knowledge of how to take care of ourselves is key. I turned to women's health and, along with several other women in Gainesville, Fla, cofounded a women's health center and a free-standing birthing center. Together, we developed women's health services sensitive to the needs of women, including demystifying medical care and encouraging women to actively participate in their own health care.

Many community-based organizations arise out of personal experiences, and they are often the ones that have their fingers on the pulse of the people. A number of them have dramatically changed our nation's thinking on issues. And, thanks to the feminist movement, women have been the catalyst for many of these important, ground-breaking community-based organizations.

In very profound ways, the second wave of feminism, in its questioning of women's relationships to themselves, men, family, work, and health, allowed women to politicize personal issues and to organize around them. For example, Mothers Against Drunk Driving (MADD) was founded in 1979 by a woman whose 5-year-old daughter became a quadriplegic after an accident with a drunk driver traveling at 120 mph. That organization has changed our nation's perspective on drunk driving and saved thousands of lives. The Susan G. Komen Breast Cancer Foundation arose out of Nancy Brinker's commitment to her sister's struggle with breast cancer.

Organizations like these were deeply influenced by the women's health movement, itself a child of the women's movement of the 1970s. As abortion became legalized all over the United States, women started establishing women's health care centers that provided abortion and well-woman gynecologic services. They created child birthing centers, staffed by certified and lay midwives. Other community-based organizations focused on health care publications for women, such as the Boston Women's Health Book Collective's pioneering book Our Bodies, Ourselves. The women who formed The National Women's Health Network honed in on the birth control pill and challenged its efficacy and high hormonal levels. The Committee to End Sterilization Abuse questioned the numbers of Puerto Rican and Black women, many in their 20s, who were being sterilized.

Too often, we forget that organizations like these, even in their infancies, do the work of public health. Frequently, we take the "public" out of public health and allow the practice to become extremely narrow, limited to experts telling the public what's best for them. But in reality, there are not enough public health educators to treat and teach the public. This means that people—the public—must participate in a much more active way. And though it is rarely acknowledged, that is exactly what is happening. In almost every major city, women-organized community-based organizations provide a place for dialogue, education, organizing others, and making demands of the health care system. Their efforts to be active participants in their own health care include insisting on access to health records and information about contraindications of medicines. Who, then, does the work of public health? We all do.

	HOW I LEARNED THE MEANING OF PUBLIC HEALTH

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At the Gainesville Women's Health Center and Birthplace, we did our best to provide pregnant women with care that addressed, not just the pregnancy, but all parts of their lives. We understood that pregnant women need prenatal caring, a system that helps them feel loved, respected, and empowered to take care of themselves and their families. In addition, we need to be actively involved in their health care and treated with respect.

View larger version (158K): [in this window] [in a new window]   Byllye Y. Avery, Founder, National Black Women's Health Project.

After I moved on to another job, my interest in the overall health status of African American women became more intense. As the director of a Comprehensive Education and Training (CETA) program, I became concerned with the high absenteeism among the young women. Upon closer examination, I learned that many were hypertensive, diabetic, mothering too many children at an early age, and victims of domestic and sexual abuse. Many of the women were depressed and too many had low self-esteem.

I soon began to gather rather dismal statistics about Black women's health. Compared with White women, we had and continue to have disproportionate rates of hypertension, diabetes, cervical cancer, HIV, and lupus, and we die earlier and more often of nearly every serious disease. Twenty-five percent to 30% of us who live in the inner city receive little or no prenatal care, and our babies die at almost twice the rate of White babies. The oppressive conditions under which we live have forced us to pay a cost emotionally, mentally, and physically. In our wealthy country, we struggle to survive day to day as we deal with racism, sexism, and classism. Many of us do not have access to affordable health care, are unable to buy healthy, nutritious foods, and do not feel we have the time, money, or energy to exercise regularly. The list goes on and on.

I decided that it was necessary to find a way to bring Black women together to talk openly about our lives and our health issues and to implement ways to reduce health disparities. What were we concerned about? How do we learn who we are? What is the most effective way to reach African American women?

My resolve was cemented in 1981, when 22 women from around the country met for the first time to plan the first National Conference on Black Women's Health Issues at Spelman College in Atlanta. At that conference, held on June 23, 1983, 2000 of us lived and breathed 3 days of public health at its finest and most intense. Our opening speaker, Dr June Jackson Christmas, then the president of the American Public Health Association, instructed us to think about health as "not merely the absence of illness but the active promotion of emotional, mental and physical health of ourselves and future generations." Over the next 2 days, we did just that, affirming over and over our theme, "I'm sick and tired of being sick and tired," a phrase borrowed from activist Fannie Lou Hamer.

We broke the conspiracy of silence about our health and our lives. We talked in ways we had never talked before. Women spoke openly about a wide range of topics, from domestic and sexual violence to psychological well-being, diabetes, lesbianism, and childbirth. We were comforted and validated through the sharing of our experiences with each other. We were moved by what happened, but even more, it dawned on me that that conference defined the true meaning and spirit of public health. When women make their stories public, without the shame and embarrassment that keep us silent about our health, we become active participants in our health, and those who listen to them and support them benefit as well.

As we made a commitment to our health, we began to understand the umbrella of oppression that hovers over us: the persuasiveness of racism, sexism, and classism. These oppressions are interlocking and affect us in all areas of our lives, even when we believe ourselves to be thriving personally and professionally. By better understanding the ways in which these interlocking oppressions affect our health, we were able to view our wellness within the broader social, political, and economic context that is our reality. In this way, we saw that our efforts to promote our health—to take control of our lives and support each other to do the same—were clearly political in nature.

	BLACK WOMEN NEED THEIR OWN HEALTH MODEL

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Like most modern-day families, African American families are smaller and more isolated than those of their ancestors. We have lost our well-known tradition of the extended family through which health and self-care information was shared. This isolation has left women with fewer opportunities to talk with others about their lives, so many are left to suffer physical and psychological ailments in silence. They blame themselves for the situations they are in, believing that it is only happening to them. This conspiracy of silence, compounded by racism, sexism, and classism, contributed to making women feel unworthy and undeserving. These feelings of hopelessness and helplessness created an atmosphere of psychological distress, which prevented women from taking care of themselves and their families.

That first gathering in 1983 showed me the need for Black women to gather and speak about our pain, emotional and physical, with each other. The challenge was to capture the spirit of hopefulness and empowerment and continue the work we started at that conference. We also needed to figure out how to develop our own health perspective, a perspective on health that was uniquely Black and female.

We knew that there were certain elements that had to be maintained. The idea of a holistic approach to health is essential. On the basis of our African heritage, African American women respond positively to health care that addresses our need to integrate our feelings and spirituality with health information. This kind of holistic approach allows us to feel whole, look critically at ourselves, unite with each other, and feel powerful and proud. It is also crucial for Black women to come together in a safe place to talk about the issues that have rendered us vulnerable. Breaking the silence and pinpointing our concerns and priorities had to be done within the trusting circle of Black women.

One year after the 1983 conference, the Black Women's Health Project became the National Black Women's Health Project, its mission to develop ways of motivating and empowering Black women to take charge of their health, their families, and their lives. We started to organize self-help groups throughout the country; we opened our hearts, faced our fears, and talked openly about our lives and our health conditions. In the circles, in the presence of others, we cried, laughed, were comforted, and gained strength. We learned that we could develop our own perspectives on our health. We learned that we are powerful and worthy of the best of everything that life has to offer. We gave birth to ourselves in the midst of, and with the help of, each other.

This message was communicated throughout all of the work of the National Black Women's Health Project, but it was clearly demonstrated by women who recounted the ways in which their lives were changed. By taking charge of their lives, they were making changes in all segments of their lives and their families. African American women started to claim their personal power, which translated into women who were living their lives in more authentic ways.

	RUNNING WITH IT

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The National Black Women's Health Project's first self-help group was formed in rural Monteocha-Gordon, Fla. The women from the town loved the concept of self-help and wanted to get involved. I told them that I would let them know the next time we would be meeting in Gainesville, and they let me know that they preferred to meet in their own town. My first organizing lesson: Meet people where they are. By the time of the Atlanta Conference in June 1983, we had organized over 20 self-help groups with women making the commitment to their health. These groups were expanded after the conference to over 75 groups in many states. This work was supported by the task force meeting convened quarterly in the north Georgia mountains. An average of 250 women attended these meetings, became inspired, and integrated their new health insights into their family and work lives. In 1988, there was some kind of Black women's health activity going on somewhere in the United States almost every weekend. In 1986, the National Black Women's Health Project started working with women in Belize, Barbados, and Jamaica. This work paved the way for the development of SisteReach, which includes women in Brazil, Nigeria, Cameroon, and South Africa.

View larger version (178K): [in this window] [in a new window]   New Orleans Walking for Wellness participants, New Orleans, February 2001.

	WHERE WE ARE NOW

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The project has been up and running for nearly 20 years, and it remains the only national organization dealing solely with the health of Black women. Over these past 20 years, our work and our existence have helped thousands of Black women, directly and indirectly. However, nearly 2 decades later, the national status of Black women's health continues to ail; it is the worst of any group on nearly every health index. For example, death from the most natural human female biological events, pregnancy and childbirth, is 4 times higher for Black women than for the general population—the mortality rate for Black women has not changed in 30 years. HIV/AIDS is now a leading cause of death among Black women in their prime reproductive years. These examples, among countless others, call for the National Black Women's Health Project to build upon its solid foundation and extensive national reach to intensify its efforts to eradicate the race–gender health gap that has devastated Black women far too long. Toward that end, the board of directors of the National Black Women's Health Project recently adopted a new governance model and approved a 5-year strategic business plan that will create a multipronged approach to Black women's health concerns.

View larger version (106K): [in this window] [in a new window]   New National Black Women's Health Project Leradership: Lorraine Cole, PhD, President/CEO; Byllye Avery, Founder; Sharon Edwards, Board Chair.

The Education Center has been established, under the direction of Dr. Lorraine Cole, to design, develop, coordinate, and implement programs to promote health as a way of life for Black women and their families. We have expanded our priorities to address a broad range of the lifestyle, psychosocial, gynecologic, and fertility management issues. Although the project will employ a wide range of educational programming, self-help groups remain our signature methodology and are key to ensuring that our programs are conducted within a context of cultural understanding and the comfort of other Black women. All of these issues will be encompassed in our 20th anniversary Black women's health conference, which is currently planned for June 2003.

The Health Policy Center has been established to enable us to closely coordinate the development of a health policy platform on a range of issues regarding the health of Black women, as well as to promote this agenda at all levels of state and national government. We have created a curriculum to train a "sisterforce" of health advocates across the nation, and we are preparing to conduct a national colloquium on the politics of Black women's health.

The Research Center has been established to conduct qualitative and quantitative studies pertaining to the health of Black women and to serve as a conduit for the participation of Black women in clinical trial research. For example, we are currently leading a coalition of community partners in New Orleans to study cardiovascular risk reduction involving women in 40 churches. We are also engaged in a weight management study to develop strategies to prevent obesity, which is much more common in Black women than White women.

The Knowledge and Leadership Center has been established to serve as the Black women's health think tank and resource library. We engage experts in the social, legislative, academic, and health arenas to inform the health policy statements and agenda of the organization.

Our aim is for each center to become a gathering place for health information, health care resources, and collective strength for health care consumers, health professionals, researchers, and the media. The centers continue to be an integral part of our plan to reach Black women wherever they gather, engaging the intricate web of other organizations that have memberships or constituencies that include Black women. Recognizing the tremendous power of technology to support the movement to eradicate the race–gender health gap, we are building a virtual community through our Web site, www.BlackWomensHealth.org, in addition to strengthening our "vertical" community of Black women.

We also know that we can't do the work alone, so we are making a deliberate effort to broaden our membership to include all individuals who care about the health of Black women. Through this organizational metamorphosis, the National Black Women's Health Project will undertake aggressive efforts to educate, research, establish policy, advocate, manage information, and enable Black women to save and extend their lives.

	Footnotes

 
Peer Reviewed

Accepted for publication December 6, 2001.

This Article Abstract Figures Only Full Text (PDF) Submit a response Purchase Article View Shopping Cart Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Avery, B. Search for Related Content PubMed PubMed Citation Articles by Avery, B.