CHAPTER 23
Julia Scott, excerpt from a speech given at the Canada-US Women’s Health Forum, August 8, 1996, Ottawa, Canada. Reprinted by permission.
I want to reflect on the growth of the women’s movement in the United States and its prospects for the future. I look at our current challenge as twofold. One is to get the word out about women’s health status globally and not just in our own countries. The second, which is much harder, is getting past simply having the rhetoric and language about inclusiveness and diversity, and really getting down to the hard work for each of us and seeing how we hinder the expression and existence of that inclusiveness and diversity. It’s very difficult to talk about these issues. Those of us who do are seen by the establishment as wild-eyed radicals, always bringing up things that might perhaps divide us. We want to be together in solidarity around gender issues. But we have to acknowledge that there are differences among us that impact our health. So if we raise these issues, it’s not to be contentious or argumentative, although for some people that may be part of the reason, but to say that if we really believe in equality, we have to discuss what our differences are and not see them as ways that somehow make our effort less.
I always feel particularly challenged, particularly as a woman of color, to get up and speak on these issues. For the United States, I think we’ll really be able to say that we have made progress in our movement when women other than women of color or poor women speak and work on these issues with the same fervor that they do on the issues of the so-called majority women.
Let’s be clear that the women’s health movement in the United States did not begin in the 1990s. The gains of the 1990s are directly related to and benefited from the organized women’s movement of the 1970s and 1980s. The advances that we have been able to make in the 1990s, with the greater influx of women into positions of power, in legislation and administration, from the NIH to FDA, have been because of the hard work of women in the 1970s and 1980s. These women were not necessarily in the medical establishment, but they were activists and everyday women, who got sick and tired of not having answers and having all of our health problems labeled as hysterical or the results of our having our periods.
The woman’s health movement also benefited from the struggles and the strategies of the civil rights movement. Many of the gains that the women’s health movement has been able to make in the United States have been borne on the back of black men and women who struggled for racial equality in the United States.
What we know from the many gains we have made is that, in spite of the valiant efforts of so many women, including President Clinton’s appointment of many women throughout this administration and the influx of women, especially women of color, into our own legislatures, they still have not afforded us the kind of access to health and health care that women so richly deserve. It’s not enough simply to have women in place. We do have to question the philosophy of women who are appointed to these commissions and decision-making bodies, because very often some women who are not progressive have been some of our own worse enemies.
So, while it would not be possible to talk in detail about all the women’s groups and organizations who have pioneered this work in the United States, I can still say that it is recognized that the group of women who came together to prepare publication of Our Bodies, Ourselves gave us the first work that paved the way to confronting some of women’s anger and frustration about the lack of information and control we had concerning our bodies and the lack of access to health care treatment modalities. Also, the National Women’s Health Network was and is the women’s premier feminist health organization in the United States.
The National Black Woman’s Health Project came out of that movement. Our founder, Byllye Avery, was on the board of that organization and became horrified when looking at the statistics and seeing the paucity of information available about black women’s health. She was struck, especially, in 1979, by the National Health and Nutrition Examination Survey, conducted by the National Center for Health Statistics, Centers for Disease Control and Prevention (NCHS/CDC), which showed that black women, in a self-administered survey where they rated themselves, were in more psychological stress than white women who were institutionalized. It seemed to her—something that we have to acknowledge—even the best organizations that have the right kind of analyses in terms of race and class and their impact on our health status will never take the place of women of color having their own organizations and doing their own work. So, while we support and need the support of the broader white women’s health movement, in our country and globally, we insist that work on these issues, especially issues that are critical to our health, are led by the women who are affected by them.
At the heart of our focus today is the fundamental question of how women can fully access good health and the best care that the United States, international leader in medical research, has to offer. We seek access for women who are poor or wealthy, married or single, migrant workers, office workers, homeless, differently abled, professionals, homemakers, heterosexual, bisexual, or lesbian. This perspective was not in the mix when the women’s health movement first began agitating. The first inkling of a women’s health movement was the 1960s campaign where a few isolated women were fighting for natural childbirth. They wanted to decrease the use of anesthetics women were being given during delivery. And they started to banish from the delivery room practices which had developed, not to improve the overall well being of mother and infant, but to increase the convenience for doctors. In raising these issues, the small group began to insert a new dynamic into the doctor-patient relationship.
Let me take a moment to talk about some of the differences in health concerns, fully aware that sometimes such discussions will be seen as a way of dividing us. However, it’s really important for us to acknowledge that there are differences.
I will give just a few examples of those differences. While breast cancer doesn’t affect black women at the same rates that it affects white women, it does affect us differently. We tend to get it at an earlier age, and the regulations which give an age at which women should get their first mammography is really problematic for us. That’s why we have been fighting so valiantly to get those regulations changed. We would like it to be acknowledged that for black women, getting our first mammography at age forty or fifty is simply not good enough. We have also been fighting for more research on breast cancer to look at those differences. For instance, only last year a study came out suggesting that not only do we get it earlier but that we get a more virulent form of it. We, basically, have been told that the reason we die from breast cancer more frequently than other women is because of lack of access to such things as mammographies. While I’m sure that does have an impact on the situation, we have been struggling to make sure that we pay as much attention in our research agenda to the issues of the environment and of diet and how that relates to the different women of color communities.
The issue of AIDS is another area we have to look at differently. It’s an issue that has been dealt with as a white male disease. But as the majority of the women who are being affected by this are minority women, mainly black, latino, and Native American women, we now find the money is starting to dry up. Also we find a lot of punitive legislation being aimed at women who are HIV-infected. Instead of funding treatment programs and research programs that would look at how women are differently affected by HIV, we find that legislatures and judges want to mandate that women take medications like AZT against their judgments and that there be mandatory HIV testing. These are all things that we have to be concerned about.
The area of reproductive technologies is a huge issue for all women, but especially for women of color in the US. These are the same women who have been targeted for unsafe contraception, for sterilization abuse—and this is not something that has simply happened in the past. This is something that is happening right now.
Let’s also think about the work on identifying the breast cancer gene. This is something we have to be very concerned about. Now insurance companies have or will have the ability to get at information that identifies certain people as being at risk for chronic and debilitating diseases. Then those people are going to be excluded from getting health care. So, while we cannot minimize the opportunities that allow more choice to women, we have to look at the downside, and pay attention to it.
The women of color movement has been very forceful in the US in looking at the use of long-acting contraceptives. We agree that this is something that is much needed in the very meager menu of choices that are available to women, but there are also serious problems with the discriminatory use of these methods aimed and targeted at poor women and women of color. We think it was the dragging of the feet of women and men in the health community, and the women’s health community itself not joining us in that struggle, that has brought us to a place now where we have a method that could be valuable for some women, but is now in jeopardy in our country. We cannot continue to hide our heads in the sand over this issue.
I think the women’s health movement has grown to a place where it is starting to acknowledge, at least in rhetoric, that race, ethnicity, and class affect and impact the quality of health care for women; but I also think we have not gone that next step of working on how we can all very seriously talk together and address the racist practices in our institutions that keep us from working together. I hope we will spend more time talking about the issues and how we can address them. I hope we will come to a time when the broader women’s community will be able to accept the leadership of women different from themselves, accept that we may have to change our strategies. Maybe we won’t be able to get there the way everybody is used to getting there, but we will get there.
Germaine Greer, excerpt from The Whole Woman, New York: Knopf, 1999, with an introduction by Jennifer Baumgardner. Reprinted by permission.
Germaine Greer’s new book The Whole Woman, her thirty-years-later follow-up to The Female Eunuch, is thoroughly disliked by everyone from the staid stylists at the New York Times to the chatty philosophers at salon.com. The consensus is that the book is shrill and disorganized, the work of a past-her-prime second-waver: bitter, batty, and male-bashing.
The fact that her critics, former fans all, find her to be so sour and incompetent points to the central difference between her audience then and now. The Female Eunuch spoke to women on the brink of a tumultuous shift in status and consciousness. The Whole Woman is written for feminists, women for whom finding the political roots of what appear to be personal problems is a matter of course. Instead of being happy with whatever progress has been made, Greer wants women to be insulted and angry by the scraps now offered us as “feminist emancipation,” be it the “privilege” of abortion or “flex” time for overworked mothers.
With Eunuch, Greer said that women were castrated, cut off from their sexuality, and tried to get women to assert cunt power when most feminists were focusing on political power. Now that the prosex, get-on-top, use-toys, he-better-make-you-come aspect of feminism is ascendant (see Bust, Minx, Susie Bright, etc.), Greer is again fighting for the neglected side, turning her attention to politics … analyzing everything from deadbeat dads to transsexualism to girlie culture to female mutilation. And some of Greer’s strongest inquiries concern women’s health.
“Revolution,” the final chapter of The Female Eunuch, concludes with the challenge, “What will you do?”; in The Whole Woman, Greer renews her question, asking not only what we will do, but what, during a three-decade interim, we actually have done.
I hope that despite the bad reviews, serious students of feminism will still read The Whole Woman. So much about what makes an ambitious book become big is timing. Yet the fact that the thirty-four heavy-hitting essayettes of The Whole Woman could be dismissed so easily is evidence that, despite the fragments of feminists’ rhetoric in every atom of our culture, the whole of women’s liberation that Greer envisions is still as hard for us to picture as the round earth was for Columbus’s shipmates. To think that Greer is recanting on her free-your-ass credo from 1970 is to see just half the picture. Greer didn’t think women could fuck themselves into liberty, but that we needed to be free to fuck as well as to do anything else. Her definition of whole means for women to be sexual and confident at the same time as they are political and conscious, and that’s my definition, too.
—Jennifer Baumgardner
This sequel to The Female Eunuch is the book I said I would never write. I believed that each generation should produce its own statement of problems and priorities, and that I had no special authority or vocation to speak on behalf of women of any but my own age, class, background, and education. For thirty years I have done my best to champion all the styles of feminism that came to public attention because I wanted it to be clear that lipstick lesbianism and the prostitutes’ union and La Leche and the Women’s League for Peace and Freedom and pressure for the ordination of women were aspects of the same struggle toward awareness of oppression and triumph over it. Though I disagreed with some of the strategies and was as troubled as I should have been by some of the more fundamental conflicts, it was not until feminists of my own generation began to assert with apparent seriousness that feminism had gone too far that the fire flared up in my belly. When the lifestyle feminists chimed in that feminism had gone just far enough in giving them the right to “have it all,” i.e., money, sex, and fashion, it would have been inexcusable to remain silent.
In 1970 the movement was called “women’s liberation” or, contemptuously, “women’s lib.” When the name “libbers” was dropped for “feminists” we were all relieved. What none of us noticed was that the ideal of liberation was fading out with the word. We were settling for equality. Liberation struggles are not about assimilation but about asserting difference, endowing that difference with dignity and prestige, and insisting on it as a condition of self-definition and self-determination. The aim of women’s liberation is to do as much for female people as has been done for colonized nations. Women’s liberation did not see the female’s potential in terms of the male’s actual; the visionary feminists of the late sixties and early seventies knew that women could never find freedom by agreeing to live the lives of unfree men. Seekers after equality clamored to be admitted to smoke-filled male haunts. Liberationists sought the world over for clues to what women’s lives could be if they were free to define their own values, order their own priorities, and decide their own fate.
The Female Eunuch was one feminist text that did not argue for equality. At a debate in Oxford one William J. Clinton heard me arguing that equality legislation could not give me the right to have broad hips or hairy thighs, to be at ease in my woman’s body. Thirty years on, femininity is still compulsory for women and has become an option for men, while genuine femaleness remains grotesque to the point of obscenity. Meanwhile the price of the small advances we have made toward sexual equality has been the denial of femaleness as any kind of a distinguishing character. If femaleness is not to be interpreted as inferiority, it is not to signify anything at all. Even the distinction between the vagina, which only women have, and the rectum, which everybody has, has been declared, as it were, unconstitutional. Nonconsensual buggery, which can be inflicted on both sexes, has been nonsensically renamed “male rape.” In June 1998 an overwhelming vote of the British House of Commons recognized the right of sixteen-year-old homosexual men “to have sex,” by which they meant, apparently, for it was never explained, the right to penetrate and be penetrated anally. This the MPs saw as granting homosexual men the same rights as heterosexuals. For them at least, rectum and vagina were equivalent; in many cultures (and increasingly our own) the most desirable vagina is as tight and narrow as a rectum. Postmodernists are proud and pleased that gender now justifies fewer suppositions about an individual than ever before, but for women still wrestling with the same physical realities this new silence about their visceral experiences is the same old rapist’s hand clamped across their mouths. Real women are being phased out; the first step, persuading them to deny their own existence, is almost complete.
In the last thirty years women have come a long, long way; our lives are nobler and richer than they were, but they are also fiendishly difficult. From the beginning feminists have been aware that the causes of female suffering can be grouped under the heading “contradictory expectations.” The contradictions women face have never been more bruising than they are now. The career woman does not know if she is to do her job like a man or like herself. Is she supposed to change the organization or knuckle under to it? Is she supposed to endure harassment or kick ass and take names? Is motherhood a privilege or a punishment? Even if it had been real, equality would have been a poor substitute for liberation; fake equality is leading women into double jeopardy. The rhetoric of equality is being used in the name of political correctness to mask the hammering that women are taking. When The Female Eunuch was written our daughters were not cutting or starving themselves. On every side speechless women endure endless hardship, grief, and pain in a world system that creates billions of losers for every handful of winners.
It’s time to get angry again.
The womb rudely awakens the growing girl to its presence by causing her to shed blood through her vagina. The more difficult the process, the more bloated and bilious she feels, the more dragging the pain, the more negative the ideas of a womb will seem to her. As she has heard the womb spoken of as a space inside her, like a room she did not know she had, her menstruation appears like a troublesome tenant after whom she has to clean up.… Though feminists have argued that we should celebrate the menarche as a young woman’s coming of age, with a visible rise in status to compensate her for the inconvenience of menstruation and ward off any attempt on her part to cancel the whole process by remaining a skinny child, nothing has happened to endow the cycle with glamour or respect. We call the napkins used to soak up menstrual discharge “sanitary protection” as if the blood was both dirty and dangerous. Sanitary protection may now be advertised on television, not because women’s functions are no longer considered shameful or disgusting but because the potential earnings are enormous. High profit margins on napkins that women have no choice but to buy are used to subsidize marketing campaigns for luxury products.
Neither women nor men have a positive attitude to menstruation.… The questions of the exorbitant cost of napkins and tampons has been raised regularly by feminists; feminists were the first to point out the dangers of asbestos in tampons and of toxic shock syndrome.… If women regard their own menstrual fluid as “googoomuck” we are a long way from taking the pride in our femaleness that is a necessary condition of liberation. Hundreds of feminists have tried all kinds of strategies for filling the idea of menstruation with positive significance, but it remains a kind of excretion, the liquefaction of abjection. Advertising of sanitary protection can no more mention blood than advertising of toilet paper can mention shit. When we come to recognize the taste of our menstrual blood on the lips or fingers or penis of a lover, perhaps then we will realize that it is not putrid, not dangerous, not in the least disgusting. One of the latest explanations of the real function of the uniquely human process of menstruation holds that the shedding of the blood is not an excretion but protection of the sloughing womb from infection.
For 30 years feminists have struggled to develop a positive imagery of the womb and ovaries. Feminist artists have painted, modeled, woven, potted, photographed, filmed, videoed, and embroidered sumptuous images of the female genitalia to absolutely no purpose. As far as mainstream culture was concerned, cunt art was no more than a sub-branch of gynecology. Though much of the most influential art of the 1990s was focused upon the body as the locus of gender and the modality of socialization, no girl drifted off to sleep at night and dreamed of her mysterious innards under any shape she could recognize. Though women artists devised myriad fabulous boxes, purses lined with satin or fur, and glimmering bottomless caves, ordinary women derived little comfort from a new awareness of themselves as buried treasure. It would take more than a trip through the vagina of sculptor Niki de St. Phalle’s ninety-foot-long female figure “Hon” to awaken the consciousness of the womb. More memorable perhaps were the artistic experiences of the womb dramatized as bruising encounters with obstetric technology.
Perhaps womb pride was too much to expect. The word “womb” originally meant any hollow space and by extension came to mean “belly” or “abdomen.” The use of the word in modern times exclusively to signify the organ of gestation demonstrates our inability to think of the womb as anything but a passive receptacle, a pocket inside a person rather than the person herself. The ideal body is imperforate; the wombed body is grotesque and gaping, like Luna Park. Women’s “inner space” implies a negative, an unsoundness, a hollowness, a harbor for otherness. But the term is misleading; there is no more a void inside a woman than there is inside a man. The unpregnant womb is not a space, but closed upon itself. The womb is not a sinus or a sac. The image of the uterus as a void waiting to be filled is an artifact derived from billions of lying diagrams that represent the fabulous baroque biochemistry of the womb as if it were the pocket of a billiard table. Women artists have done their best to counteract this by introducing fiber-optics into their own bodies, to show the quivering liveliness of the cervix’s puppy-muzzle and the surging pulse of the fallopian tube amid its dancing fimbriae. Very few are watching, and for those who are there can be no shock of recognition. Consciousness is made of language, and we have no language for this. Cock and balls have a thousand names but uterus and ovaries have only their medical labels.
To justify the dragooning and torturing of women the public health establishment uses the rhetoric of feminism. Screening for cervical cancer was hailed as a woman’s right; the taxpayer willingly stumped up for it, convinced that if women just had this itty-bitty test every now and then they would stop dying of cervical cancer. But they didn’t. Deaths from cervical cancer, which were already falling, continued to fall, at a rate of about 7 percent a year. Meanwhile the one in six tested women called for retesting suffered agonies of fear and bewilderment, as well as all kinds of surgical interventions from colposcopy to hysterectomy. Women were practiced on with an inefficient diagnostic tool because they were not the point; control was the point. The rest was oversold as an insurance against developing cervical and uterine cancer when it was no such thing. In case this sounds incredible, let me explain.
The current state of our understanding of cervical cancer is that it is in whole or in part a sexually transmitted disease, caused by the human papilloma virus (HVP), which causes genital warts and is carried by males and females.… Between 1960 and 1980 the incidence of cervical cancer in women under the age of thirty-five trebled and the number of deaths from the disease in this age group rose by 72 percent. In the nineties 15 percent of cases occur in this age group. The disease appears to progress slowly, taking about ten years to become manifest, but in general its career is not well understood.
The national cervical cancer screening program is based on the Papanicolaou smear, which has a false-negative rate estimated in 1979 as anywhere between 25 and 40 percent; where invasive cervical cancer is concerned, the rate may be as high as 50 percent. Abnormal Pap smears will also result from common infections. The remains of blood, or sperm, or contraceptive creams and jellies, vaginal douches, and deodorants in the vagina will affect the quality of the sample. Contraceptive pills and medications of other kinds can also distort the cell profile. If the test is not taken twelve to sixteen days after a period, and forty-eight hours or more after the last intercourse, its reliability may be compromised. As the supposedly premalignant changes in cell conformation are quite subtle, the job of evaluating cervical smears is both immensely boring and unremittingly stressful, even without the constant pressure for greater productivity. The Wall Street Journal reported in 1988 that a large proportion of US smear tests were read in high-volume cut-rate laboratories where technicians were sometimes given financial incentives to up the number of slides they read in a day to as many as 300, four times the maximum recommended if the human error rate was to be kept to a minimum. Some laboratories paid screeners on a piecework basis, sometimes as little as forty-five cents a slide.…
The adoption of a simple positive-negative classification conceals seven categories, from minor and almost certainly insignificant changes in the cell structure to changes considered definitely precancerous to actual in situ carcinoma. The difficulty in assessing smears correctly is clearly illustrated by the wide variations in practice between one region and another.… In Britain 5.5. million women a year are given smear tests; an average of 7 in every 100 of their smears will be considered positive, giving a total of 385,000 smears. In fact no more than 4,500 women will develop cervical cancer in any year, so 380,500 will have been frightened needlessly.… In June 1995 an article in the Lancet reported that “staff live in fear of being blamed for failing to prevent invasive cases of cancer. The desire to avoid overdiagnosis, which in the past kept the detection rates low, has now been outweighed by the need to avoid any possibility of being held responsible for missing a case.” The result is an epidemic of terror.…
To be recalled for a second Pap smear is to catch the disease of fear. The test having been oversold in the first place, the woman is sure that there is something terribly wrong. After all, if it is true that atypical cells usually clear up spontaneously, what was the point of going through all the humiliating palaver of the test in the first place? The woman who is recalled may be given the all-clear after another sampling or two, but will she quite believe it? If she keeps being called back, every three months, or every month, she is very likely to make sure that she hasn’t got cervical cancer by opting for and actively seeking a hysterectomy. A hysterectomy is a major operation with a long recovery period. The hysterectomized woman will need hormone replacement therapy and be “under the doctor” for a very long time, perhaps the rest of her life.…
Every time the newspapers report that a health authority has had to recall-screen women because a second examination of their slides has led to different conclusions about their status, fear stalks the land. Public health consultant Dr. Angela Raffle dared to tell the truth, that cervical screening is “actually expensive, complicated, and relatively ineffective. Only about 50 percent of cases are picked up and there is huge and escalating overdetection and overtreatment.” Raffle went on: “Screening has become something of a feminist icon and it is very hard to explain that cervical cancer was a rare and diminishing cause of death before we even began screening.” Male-dominated governments are remarkably unaware of “feminist icons” and don’t often, if ever, invest huge amounts of money in them. If the American government now spends $4.5 billion on Pap smears every year, it is not because they are being pushed around by a bunch of noisy feminists but because of the power and priorities of the medical establishment.…
No pressure group within the medical profession is lobbying for the right to save men’s lives by regularly examining the prostate. Occasionally we hear that clinicians regret men’s unwillingness to be routinely poked and prodded and X-rayed, but the temptation to set up a screening service for men has so far been successfully resisted, on the same sorts of considerations that should have prevented the setting up of women’s screening programs. There is a strong impression that men are no more likely to submit their testicles to official care and attention than they are to wear their muffler when it is cold and keep their feet dry. The service exists for them to avail themselves of if they want to, and that is deemed to be sufficient. Men have the right to take care of themselves or not, as they see fit, but women are to be taken care of whether they like it or not. Screening is many times more likely to destroy a woman’s peace of mind than it is to save her life. Women are driven through the health system like sheep through a dip. The disease they are being treated for is womanhood.
You and I need all the mothers we can get. Governments rely on taxes on current earnings for the funds that run our societies; the people now in work pay for the care and support of the people who are not in work. As the work force shrinks and life expectancy increases it becomes harder and harder to pay the social security bill. We all need the children being born now and we need them to grow up as well-educated, useful people, not circling aimlessly round the poverty trap. In The Female Eunuch I argued that motherhood should not be treated as a substitute career; now I would argue that motherhood should be regarded as a genuine career option, that is to say, as paid work and as such an alternative to other paid work. What this would mean is that every woman who decides to have a child would be paid enough money to raise that child in decent circumstances. The choice, whether to continue in her employment outside the home and use the money to pay for professional help in raising her child, or stay at home and devote her time to doing it herself, should be hers. By investing in motherhood we would inject more money into child care, which is the only way to improve a system that at present relies on the contribution of disenfranchised, low-paid, unresourced, and unqualified women. The sooner we decide that mothers are entitled to state support to use as they wish, the less it will cost us in the long run. We will be told on all sides that we can’t afford it. If we weren’t paying to send aircraft carriers to the Gulf and any other place Bill Clinton thinks a saber should be rattled, we could afford it. It is a question of priorities. Dignified motherhood is a feminist priority. A permanent seat on the UN Security Council is not.
In The Female Eunuch I argued that feminism would have to address the problem of male violence both spontaneous and institutionalized, but I could suggest no way of doing this beyond refusing to act as the warrior’s reward. Even then radical women were demanding the right to aggression as a basic human right and women’s groups were training in self-defense and martial arts. The assumption seemed to be that all human beings were violent unless they were deprived of the right to aggression by an oppressor. Freedom had to include the right to beat your enemies up. The outcome of a free-for-all seemed to me obvious: if violence is a right the strongest and the cruelest will always tyrannize over the gentle and the loving. Only those women who were strong and cruel enough could join in the butchery. The rest would be butchered.
That was not an outcome that I could tolerate, so I argued feebly that women should devalue violence by refusing to be attracted to it or to reward the victors.… In the years that followed aggression was carefully studied and we began to understand rather more about it. The role of women in formenting male aggression is, I now believe, marginal, even irrelevant.… Our culture now depicts much more elaborate violence in more media more often than it did thirty years ago. Regardless of official ideologies our culture is therefore, by my judgment, less feminist than it was thirty years ago. Brutality, like other forms of pornography, damages everyone exposed to it. Violence disenfranchises all weaklings, including children, old people—and women.
Children, old people, and women are all short of testosterone. Even 10 years ago, testosterone was a word not often heard; nowadays the presence of testosterone in the environment is often remarked on. When the stands at the football ground are packed with vociferating fans it is described as a testosterone storm. When a driver kills another driver who cut him off at a corner, he does it in a “blind testosterone rage.” … By invoking testosterone a man can abdicate responsibility for his own behavior.
Testosterone does seem to be powerful. Women who have been dosed with pharmaceutical testosterone as part of hormone replacement therapy report distinct and unnerving changes in personality, which are, as one might expect, increased tension and irritability, and clitoral sensitivity raised to the point of discomfort. When women began to complain of personality changes as well as irreversible changes in voice and distribution of body hair, HRT preparations containing testosterone were deleted. It would seem that testosterone is the hormone of dominance; a survey from Mount Sinai School of Medicine in New York found that, the higher up the career ladder women had risen, the higher their testosterone levels.…
Violent sex offenders have been found, again not consistently, to have the highest testosterone levels of all. The effect of alcohol and drugs is variable; habitual use suppresses testosterone but occasional use can stimulate secretion, possibly as a feedback effect of disinhibition. This raises a further possibility that violent men are not violent because they have more testosterone to cope with, but that they have more testosterone because they are more violent.…
Taking courage, then, from the notion of biology as alterable, we can entertain the possibility that ours is a culture in which elevated testosterone levels are sought, prized, and rewarded, no matter how destructive the consequence.… Testosterone converts fear into hostility; fear stimulates secretions of testosterone along with other body chemicals associated with aggression, and off float the pheromones into the surrounding air. Could it be that we enjoy being scared and angry more than we enjoy serenity? …
Pluggers of the “future is female” line like to tell us that women’s management skills are different, because women are nonconfrontational and more interested in compromise and settlement than in imposing their will. If aggression is fun and if the biochemistry of aggression can be stimulated by cultural demand, we cannot rule out the possibility that women will gradually become as dangerous to themselves and others as men are. If the nonviolent woman is simply a subservient creature, too repressed to acknowledge her own murderous propensities, war will continue to be the human condition. War will not be rendered obsolete unless feminism and pacifism agree to persist in their historical cohabitation and build a culture of nonviolence.
The propaganda machine that is now aimed at our daughters is more powerful than any form of indoctrination that has ever existed before. Pop is followed by print is followed by video and film, and nothing that a parent generation can do will have any effect other than to increase the desirability of the girlpower way of life. Nobody observing the incitement of little girls to initiate sexual contact with boys can remain unconcerned. Regardless of the dutiful pushing of condoms in the girls’ press, the exposure of baby vaginas and cervixes to the penis is more likely to result in pregnancy and infection than orgasm. We know that some of today’s young women regard oral sex as little more than a courtesy routinely offered by cool girls to demanding boys, the girls themselves having no expectation that any man would ever do as much for them. The girls’ press does not question this iniquity; rather it reinforces the idea that boys are nabobs who can get any kind of sex anywhere and mostly cannot be bothered. To deny a woman’s sexuality is certainly to oppress her, but to portray her as nothing but a sexual being is equally to oppress her. No one doubts that teenage boys have peremptory sexual urges, but they are never depicted as prepared to accept any humiliation, endure any indignity, just to get close to some, any, girl. Nor are they pushed to spend money on their appearance or to dress revealingly or drink too much in order to attract the attention of the opposite sex. In every color spread the British girls’ press trumpets the triumph of misogyny and the hopelessness of the cause of female pride.
The trouble is not that sisterhood is powerful, as the title of Robin Morgan’s book has it, but that it isn’t. Sisterhood does not rule and will never rule, OK? The principle of sisterhood is power-sharing, which is another name for powerlessness. In a society constructed of self-perpetuating elites, a grassroots movement exists to be walked on. Elites tumble down but the grass survives to spring again through the thickest pavement. All studies of gender difference agree on one thing, that females are less variable than males. If men and women were poppies, both the tallest and shortest poppies would be men. The women would cluster around the median, the norm. If we look at intelligence or mathematical ability we can see the same phenomenon. Men are, as it were, built for competition, already separated out into winners and losers, while women are built to understand each other, to cooperate, to pull shoulder to shoulder. Indeed, we could see the historic pattern of binding a woman to a man and forcibly separating her from her female peers as a precaution against the development of a female tendency to agglomerate. Men are afraid of women in groups.
One of the advances in the last thirty years has been that women’s friendship is now a serious topic, and an entrenched value in women’s lives. Girls’ magazines treat the vicissitudes of friendship with more seriousness than the endless flummery about boys. Women’s “being there for each other” features in soap operas. Women students consider themselves bound to accept each other’s word without question, flying in the face of the prejudice that women are incapable of loyalty or trust. Only when sisterhood is real can sisterhood become powerful. We are on the way.
©1999 by Suzanne White Junod. Reprinted by permission.
Many of the medical discoveries that were made in the first half of the twentieth century came to fruition in the second half. New techniques for detecting cancer and fetal abnormalities were developed. A number of new products were introduced into the market—not always with happy results. And women’s struggle to make informed decisions about their own bodies often led to clashes with both the government and private industry. Some of these clashes took place in the courts; others, in the streets.
By 1955, four different research groups were credited with discovering that the sex of the fetus could be predicted through analysis of fetal cells in amniotic fluid. This information was important in cases of genetically transmitted sex-linked diseases.
In 1959, French cytogeneticist Jerome LeJeune discovered that one form of Down’s syndrome was caused by trisomy of the twenty-first chromosome; this paved the way for a wider use of amniocentesis in diagnosing fetal genetic abnormalities. By 1966, the problems in culturing fetal cells obtained through amniocentesis were solved, and two years later, the first abortions after midtrimester amniocentesis and karyotyping were performed.
A cooperative registry was set up in 1971 to ascertain the safety of amniocentesis. By 1976, amniocentesis was shown to have favorable results in clinical trials. By the late 1970s, there were a number of successful lawsuits against obstetricians who had failed to refer a patient over the age of 35 for amniocentesis. As a result, amniocentesis came in to greatly expanded use.
Ultrasound, which Lars Leksell had used successfully in 1953 to diagnose a hematoma in an infant’s brain, became a routine part of obstetrical practice after 1975, when improvements in grayscale and real-time imaging made it commercially successful.
The first successful use of follicle-stimulating hormone for ovulation induction was reported in 1958. The first pregnancy after treatment with human pituitary gonadotropin was reported in 1960; this led to studies of the hypothalamic-releasing factors that enable or block ovulation.
In 1969, Patrick Steptoe and Robert Edwards began collaboration on the human IVF project. Steptoe had improved the laparoscopy instrument in the 1950s and used it to operate on the fallopian tubes and to extract ova.
In 1973, Landrum Settles of Columbia University extracted an ovum from a patient with dysfunctional fallopian tubes, fertilized it with her husband’s sperm, and incubated it in his lab in preparation for implantation in her womb. Horrified, the chairman of the Department of Obstetrics and Gynecology deliberately destroyed Settles’ experiment, claiming that it was both unethical and a risk to the woman’s health.
On July 25, 1978, Steptoe and Edwards reported the birth of the first “test-tube” (IVF) baby in England.
PAP SMEAR During the 1950s, cytology laboratories were established in the United States, signifying the medical community’s growing acceptance of the Pap smear as a means of detecting cervical cancer, as well women’s increasing demand for the test. The American Cancer Society was instrumental in educating physicians on its use. By the 1960s, the Pap smear was part of regular gynecology practice. Pap Check, a do-it-yourself test that had never received FDA approval, was finally recalled in 1973.
MAMMOGRAPHY In 1960, Robert Egan at M. D. Anderson Hospital in Houston revolutionized breast imaging when he adapted a high-resolution industrial film to a mammographic technique. In 1962, Egan reported the discovery of unsuspected “occult carcinomas.”
In 1963, Health Insurance Plan of New York tested Egan’s breast-imaging technique and, in 1964, organized the first randomized controlled study to evaluate the effect of screening on mortality. Women who were screened were a third less likely to die from breast cancer than those who received physical examination only. This study served as a model for a national study sponsored by the American Cancer Society and the National Cancer Institute that included 250,000 women. In 1965, the American College of Radiology held its first conference on mammography.
Throughout the 1970s, however, there was concern about the side effects from mammography, especially in women who had undergone radiation treatment. Xerox Corporation replaced the film of the traditional X-ray with a selenium-coated aluminum plate prepared for exposure after being electrically charged. Xeroradiology reduced exposure and produced better quality images. Magnification mammography, which allowed better analysis of suspicious areas, was also introduced.
TAMOXIFEN Paclitaxel (Taxol) was first isolated from the Pacific yew in 1966. Dr. Craig Jordan, professor of cancer pharmacology and director of the breast cancer research program at the Lurie Comprehensive Cancer Center at Northwestern University Medical School in Chicago, began studying tamoxifen as a graduate student in 1969. “It was the age of making love and not war, and everybody was looking for more contraceptives.” Tamoxifen was a great postcoital contraceptive in rats, but it proved totally ineffective in women, so it went back on the shelf, at least temporarily.
But then Dr. Jordan found that tamoxifen could prevent breast cancer in animals, so in 1974 he began testing it on American women with breast cancer. In 1977, Tamoxifen was approved for patients with advanced breast cancer, and in June 1990, it was approved for node-negative patients.
DES In 1940, Charles Huggins first reported the value of a potent hormone, diethylstilbestrol (DES), in the treatment of prostate tumors. Over the next three decades, DES was prescribed to pregnant women, supposedly to improve the chances of a healthy delivery. A generation later physicians found that it caused adenosis (abnormal gland development) and vaginal adenocarcinoma (a form of cancer) in the daughters of women who took the drug. Genitourinary defects have also been found in sons, and more recent lawsuits allege harm to grandchildren as well. Since the 1970s, several thousand DES victims have sued pharmaceutical companies nationwide.
ENOVID In 1959, the FDA approved Enovid (produced by G. D. Searle) as an oral contraceptive. This profoundly altered the scope of the FDA’s authority and established what evolved into a long-term interest in women’s health issues. As FDA commissioner George Larrick pointed out, pregnancy was not a “disease.” The agency had no experience in either approving or regulating a drug for such a purpose, and although the efficacy of the pill was not in doubt, its safety was soon rendered suspect when reports of associated thromboemolic problems began to surface. In 1967, British epidemiological studies confirmed the statistical link between thromboembolism and oral contraceptives. In 1968, the FDA instituted an Adverse Reaction Data Reporting Program on oral contraceptive drugs.
SILICONE IMPLANTS The first breast implant was in 1962. In 1963, Dow Corning launched a national advertising campaign for Dow Corning Medical Fluid 360, a liquid silicone preparation that could be injected into the body “for removing facial wrinkles, recontouring women’s breasts, and reshaping other parts of the body.” FDA agents seized some of the product in the office of an osteopath and in the offices of two California cosmetic surgeons. The agents discovered that the California physicians had not only used the Dow silicone “360” in their medical practice, but also a laboratory-grade silicone and an industrial-grade silicone, which the physicians had ordered through a furniture dealer.
In 1968, Dow defendants moved to dismiss the government’s criminal indictment against them, arguing that the product that they had shipped, silicone fluid, was not a “drug” or a “new drug” under the law. The court ruled that it could not make such a determination until the evidence was heard at trial. The defendants also charged that the statutory definitions of “drug,” “device,” “cosmetic,” and “new drug” were unconstitutionally vague in regard to their product. The court also rejected this argument, saying “the choice of the proper classification is not as difficult as defendants make it out to be. With the guidance of the avowed Congressional policy of protecting the public health, when an item is capable of coming within two definitions, there is really only one answer, namely, that which affords the public the greater protection.”
In 1971, Dow Corning and S. W. Rhode, former director of Dow’s Medical Products Division, entered pleas of no contest to charges that they had sold a silicone product for rejuvenating middle-aged women in violation of the federal Food, Drug, and Cosmetic Act. The company acknowledged that it had failed to obtain premarket clearance for their product as a drug. Rhodes and Dow were subject to maximum fines of $8,000 and eight years in prison.
Four years later Dow Corning modified its original breast implant product. The FDA responded in a Talk Paper that it had “never approved injectable liquid silicone for breast augmentation or enlargement. Serious injury and at least four known deaths have been attributed to this procedure,” and warned against medical use of nonsterile industrial-grade silicone. The FDA further noted that “there is another method of breast augmentation which is performed in the United States. It involves the use of silicone in a pliable plastic bag placed over the chest muscles. None of the problems connected with liquid silicone have been reported for this procedure.”
On March 24, and July 6, 1978, the General and Plastic Surgery Devices Panel recommended that the silicone inflatable breast prosthesis be given a class II designation, but identified certain risks to health presented by the device.
DALKON SHIELD The Dalkon Shield, marketed by A. H. Robbins Pharmaceutical Company, was developed before passage of the 1976 Medical Devices Amendment and therefore did not go through a premarketing screening. Regulators had concerns about the device from the beginning, however, and it was targeted for investigation when reports of injury began to emerge.
Litigation began in 1974 and ultimately involved hundreds of thousands of claimants from among the 2.2 million women who had had the Shield implanted. By 1980, clear evidence of corporate wrongdoing and fraud had emerged, and juries routinely began awarding multimillion-dollar punitive damages. As a result, Robins entered bankruptcy court voluntarily in 1985, and in 1989 a plan was implemented to permit injured women to choose an administrative compensation scheme instead of litigation.
TOXIC SHOCK SYNDROME Toxic shock syndrome (TSS) was first identified in 1989. The earliest reported cases occurred among seven children; all were linked to the presence of staphylococcus aureus. Symptoms of the disease include vomiting, diarrhea, high fever, and a sunburnlike rash.
Before 1977 all tampon products were made of rayon or a rayon-cotton blend. Since 1977, 40 percent of tampon products have contained more absorbent synthetic material. In 1979, the FDA listed tampons as a class II device under the 1976 Medical Device Amendments and ruled that they must not contain drugs or antimicrobial agents. Today, 70 percent of menstruating women used vaginal tampons.
In 1978, TSS was identified as a distinct disease. A dramatic upsurge in cases reported to CDC occurred in 1980, when 890 cases were reported, 812 among women whose illness coincided with the start of their menstrual periods. The fatality rate among early TSS patients was around 8 percent. This striking association of TSS with menstruating women stimulated careful epidemiological analysis. When information collected by the Utah Department of Health suggested that a particular tampon brand, Rely, had been sued by many women with TSS, a detailed study was devised by the Centers for Disease Control in September 1980 to examine tampon brand use. This study found that 71 percent of a recent group of women with TSS had used Rely tampons.
On September 22, 1980, Procter and Gamble recalled all Rely tampons on the market, and all tampon manufacturers subsequently lowered the absorbency of their tampons. The FDA began requiring that all tampon packages carry information on TSS and advise women to use tampons with the minimum absorbency needed to control menstrual flow.
In 1980, the American Society for Testing and Materials organized a task force to develop uniform absorbency testing and labeling at the FDA’s request.
Although cases of menstrually related TSS fell off dramatically after 1984, the overall number of cases is suspected to have risen as the staphylococcal bacteria that produces the deadly toxin has spread to more people. Today, only about half of the cases of staphylococcal toxic shock syndrome are connected with menstruating women. TSS has been reported in men, children, and older women, and in conjunction with surgery, a wound, influenza, sinusitis, childbirth, use of a contraceptive sponge, cervical cap, or diaphragm, intravenous drug abuse, an abscess, boil, cut, or even an insect bite.
1969: Journalist Barbara Seaman publishes The Doctors’ Case Against the Pill, charging that women were not being adequately informed about dangerous side effects from the pill, including stroke, heart disease, diabetes, depression, and other ailments.
1970: Senate hearings on the pill; activist Alice Wolfson demanded to know why no women were being allowed to testify. TV cameras recorded the disruption as Seaman and other women joined the protest. The dissent helped to launch a political movement focusing on women’s health.
1975: Seaman, Wolfson, and three other women activists went on to found the National Women’s Health Network as an umbrella institution for nearly 2,000 women’s self-help medical projects. The movement centered on the overuse of medical technology, insufficiently rigorous drug testing, and refusal to listen to patients (paternalism).
1970: Alice Wolfson took the first critical steps to open a dialogue between the FDA Obstetrics and Gynecology Advisory Committee and the FDA. The meetings were closed to the public, but Wolfson and several colleagues persisted in attending anyway. “What are you discussing that women shouldn’t hear?” she asked. This was the occasion of the first sit-in at the FDA.
1970: The AMA House of Delegates passed a resolution opposing the product package insert (PPI) on the grounds that it would “confuse and alarm many patients.” A compromise was reached wherein a modified version was mailed to physicians to hand out with every pill prescription. Over the next five years, the AMA distributed only 4 million copies, although an estimated 10 million US women per annum were taking the pill. In time, the FDA went back to its original concept—distributing the PPI in the pill packet through pharmacists. Again there was opposition from doctors and the drug industry. This time the consumer groups were more successful. It is likely that the PPI has contributed to the subsequent decline in pill use.
1971: Self-help gynecology helped transform women’s health and body issues into a separate social movement. The movement was born on April 7, 1971, at the Everywoman’s Bookstore in Los Angeles. For some time feminists had met there to discuss health and abortion issues. After exhausting “book learning,” Carol Downer, a member of the group, suggested empirical observation. After inserting a speculum in her own vagina, she invited other women present to observe her cervix.
1972: Police officers arrested Carol Downer and Colleen Wilson on charges of practicing medicine without a license. Margaret Mead observed that “men began taking over obstetrics and they invented a tool that allowed them to look inside women. You could call this progress—except that when women tried to look inside themselves, this was called ‘practicing medicine without a license.’ ” (Los Angeles Times, February 5, 1974). Several months later, Downer was acquitted after two days of deliberation by the jury.
1972: Boston women organized Speakoutrage, a public hearing for women to testify about their experiences with abortion, forced sterilization, unnecessary surgery, and other forms of exploitation and mistreatment. Conditions at the Boston City Hospital ob-gyn clinic were especially decried. As evidence of medical abuse came to light in city after city and hospital after hospital, it generated a broader-based women’s health movement.
Carol Downer, the “mother” of self-help gynecology, was arrested for using yogurt to treat yeast infections and for using a device called the Del-Em for menstrual extraction, also called “self-abortion.” Her defense was eloquent and long-quoted as a cornerstone of the concerns of the women’s health movement:
In what has been described as “rape of the pelvis,” our uteri and ovaries are removed, often needlessly. Our breasts and all supporting muscular tissue are carved out brutally in radical mastectomy. Abortion and preventive birth control methods are denied us unless we are a certain age, or married, or perhaps they are denied us completely. Hospital committees decide whether or not we can have our tubes tied. Unless our uterus has “done its duty,” we’re often denied. We give birth in hospitals run for the convenience of the staff. We’re drugged, strapped, cut, ignored, enemaed, probed, shaved—all in the name of “superior care.” How can we rescue ourselves from the dilemma that male supremacy has landed us in? The answer is simple. We women must taken women’s medicine back into our own capable hands.
In 1961, news that the hypnotic drug thalidomide had been linked with an epidemic of malformed infants in Europe focused attention on women and pregnancy. Worldwide concern about thalidomide led to the passage of drug reform legislation in the United States which shut women out of the early phases of clinical drug testing and virtually orphaned clinical studies of pediatric drug efficacy and safety.
In the 1970s it was discovered that women taking the prescription drug Premarin to treat menopausal symptoms showed a lower risk of cardiovascular illness. As a result, in 1975 Rush-Cook County undertook a hormone therapy study—on men —to see what effects estrogen drugs had on heart disease. This study remains the only randomized, controlled scientific study about estrogen therapy and heart disease.
In 1977, the FDA published research guidelines that officially excluded women of reproductive age from early phases of clinical drug trials. As a result, drugs were routinely approved for general use that had not been tested on women. “Nobody was thinking much about how drugs might act differently in men and women,” said Dr. Lainie Friedman Ross, assistant director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. “Men are steady-state subjects. The problem is, about half of the people eventually taking the tested drugs were women with monthly hormonal changes.”
The scratch-your-head logic of using men to test women’s treatments helped garnish important support for the Women’s Health Initiative in the 1980s.
Sheryl Burt Ruzek, excerpt from “The Map of the Women’s Health Movement,” paper presented at the Seminar on the History and Future of Women’s Health, Washington DC, June 11, 1998; Sheryl Burt Ruzek and Julie Becker, “The Women’s Health Movement in the United States: From Grass-Roots Activism to Professional Agendas,” Journal of the American Medical Women’s Association, Winter 1999. Reprinted by permission.
Women’s health activists have generated public debate and spearheaded social action in a number of waves throughout US history, waves that University of Michigan Sociologist Carol Weisman views as part of a women’s health “megamovement” that has spanned two centuries. The US women’s health movement grew rapidly through the 1970s; broadened its base with women of color and others in the early 1980s; and contracted, was co-opted, and became institutionalized during the late 1980s and 1990s. The general feminist movement of the 1960s and 1970s spawned dozens of specific movements and hundreds of movement organizations, shaping public consciousness.
Looking back now at the early days of the women’s health movement in the late 1960s, it seems almost incredible how hard it was to get access to medical information unless you were a doctor—and most doctors were men. Few books on women’s health could be found in bookstores, except for books on childbirth. The assumption was simply that physicians were the experts and women were to do as instructed. Breaking open this closed system, laywomen asserted that personal, subjective knowledge of one’s own body was a valid source of information and deserved recognition, not scorn. The idea of women creating “observational” data out of their own health and body experiences was truly “revolutionary.”
From demonstrations during the Senate hearings on the pill to gynecological self-help groups in homes, the women’s health movement grew rapidly through the early 1970s. This activism didn’t emerge in a vacuum, but out of a social environment in which a wide array of social movements was reshaping the landscape.
The women’s health movement grew rapidly through the leadership of several grassroots groups with strong ties to other social change movements, particularly the abortion rights, prepared childbirth, and consumer health movements. As the general feminist movement of the 1960s and 1970s sought equal rights and the full participation of women in all public spheres, many believed that without control over reproduction, all other rights were in jeopardy. Thus in the early years, reproductive issues defined many branches of the movement and shaped group consciousness and social action. Reproductive rights remain central to feminist health agendas worldwide.
Feminist health writers such as Barbara Seaman, Barbara Ehrenreich, Deirdre English, Ellen Frankfort, Gena Corea, Claudia Dreifus, and columnists for prominent feminist newspapers galvanized women to explore their own health, providing critical momentum for the emerging grassroots movement. The Boston Women’s Health Book Collective produced the enormously popular Our Bodies, Ourselves, which has had numerous US and foreign language printings. The Federation of Feminist Women’s Health Centers “invented” and championed gynecological self-help and woman-centered reproductive health services. The National Women’s Health Network (NWHN) linked a wide array of local groups to provide a voice for women in Washington. Monitoring legislation, Food and Drug Administration actions, and informing the public about women’s health issues continue to be central to this organization’s mission. A few nationally prominent groups focused on specific diseases or condition (e.g., DES Action, the Endometriosis Association).
Members of pivotal groups and other health activists traveled, spoke, and published widely, and used contacts with the media effectively, becoming spokespeople for the rapidly growing movement.
Movement activists also sought a number of reforms: regulation of drugs and devices; out of hospital birthing centers and midwifery; alternative and complementary therapies; lay access to medical information; and better communication between patients and health providers. Activists have also questioned medical orthodoxies—particularly birth practices, hormone replacement therapies, and cancer prevention and treatment.
An important achievement of the women’s health movement was transferring women’s health from the domain of largely male experts to women themselves. Developing in parallel with self-help medical care movements, consciousness-raising and gynecological self-help became strategies for empowering women to define their own health and create alternative services. Local movement groups in all fifty states were providing gynecological self-help, women-controlled reproductive health clinics, clearinghouses for health information and referral services, and producing their own health educational materials. Advocacy ranged from accompanying individual women seeking medical care to advising and influencing state and local health departments.
By the mid-1970s, more than 250 formally identifiable groups provided education, advocacy, and direct service in the United States. Nearly 2,000 informal self-help groups and projects provided additional momentum to the movement. Although ideologically committed to being inclusive, the leadership of the women’s health movement remained largely white and middle class in North America during the early years. Sterilization abuse mobilized women of color to seek government protection during the 1970s, and groups such as the Committee to End Sterilization Abuse (CESA) were founded.
The women’s health movement grew visibly global, with groups such as ISIS in Geneva creating opportunities for worldwide feminist health activism. By the mid-1970s, there were more than seventy feminist health groups in Canada, Europe, and Australia. Today, there are growing efforts to make connections with feminist health activists, both in industrialized and developing countries.
As the women’s health movement evolved in the United States, the distinct health needs of diverse women emerged, and women of color formed their own movement organizations such as the National Black Women’s Health Project, the National Latina Women’s Health Organization, the Native American Women’s Health Education and Research Center, and the National Asian Women’s Health Organization. Women of color health organizations gained national recognition and developed agendas to protect women against racist sterilization and contraceptive practices; to widen access to medical care for lower income women, including abortions no longer covered by Medicaid; and to focus on diseases and conditions affecting women of color such as lupus, fetal alcohol syndrome, hypertension, obesity, drug addiction, and stress related to racism and poverty that were ignored or misunderstood by largely white movement groups. By the late 1980s, the National Black Women’s Health Project had established local chapters with more than 150 self-help groups for African-American women. Women’s health agendas also grew within organizations that addressed a broad range of issues for both men and women of color.
Other women added distinct health agendas in the 1970s and 1980s. Lesbians (the Lesbian Health Agenda), rural women, and women with disabilities (the Dis-Abled Women’s Network) joined older women’s groups (the Older Women’s League) and women with specific health concerns to broaden constituencies and issues. With the rise of environmental health concerns, groups such as the Women’s Environmental Development Organization (WEDO) built bridges between feminist health activism and other movements for social change.
Of course social movements never retain their peak levels of participation, and like other movements, grassroots feminist health organizations declined in the 1980s, apparently as a result of changes in movement adherents and the social context in which movement groups operated. For example, many founders of movement organizations returned to school, began families, or entered the paid labor force, as have the next generation of women who increasingly juggle careers and families, thus reducing the traditional volunteer labor pool. Much of organized feminism, as it evolved both in media imagery and academe, came to be seen as distant or disconnected from ordinary women’s lives.
The success of single-issue groups, particularly acquired immune deficiency syndrome (AIDS) organizations, to secure funding for direct services, education, and research presented new models for health activism. And the discovery of mainstream health institutions that “marketing to women” could increase profits led to the designation of a wide array of clinical services as “women’s health clinics.” By the 1990s, women’s health services were widespread, although most were now part of larger medical institutions. In her recent national survey of women’s health services, Weisman found that most centers founded in the 1960s and 1970s claimed a commitment to a feminist ideology; those founded later or sponsored by hospitals were significantly less likely to report this commitment. Within the movement, concerns emerged over whether new interest in women’s health reflected co-optation or institutionalization. One price of “success” is that it is increasingly difficult for women to know whether particular “women’s health centers” are truly woman-centered or simply marketed as such.
By the end of the 1980s, most alternative feminist health clinics had ceased to exist, and the survivors had broadened their range of services and affiliated with larger health systems. Gynecological self-help has virtually disappeared. The surviving grassroots movement advocacy and education groups such as the NWHN must work hard to retain support from both individuals and foundations as they compete with newer organizations for members and resources. Thus, grassroots groups contracted internally as they were diluted externally by the growing prominence of both mainstream women’s support groups (on a wide array of health issues ranging form alcohol problems to breast cancer) and disease-focused health advocacy groups whose efforts supported the growing federal initiatives for greater equity in women’s health research.
The success of the women’s health movement is reflected in the extent to which mainstream organizations and institutions, particularly federal agencies, have incorporated or adopted core ideas and created new opportunities for women’s health advocates. By 1990, the reform wings of feminism had made significant claims for gender equity in all social institutions and federal equity agendas emerged. With a growing number of women in Congress, in the biomedical professions, and in health advocacy communities, organizations that had pursued very different paths to improving women’s health coalesced around the 1989 General Accounting Office (GAO) report. This report, showing that the National Institutes of Health (NIH) had failed to implement its policy of including women in study populations, proved to be a catalyst for pressuring Congress and the NIH to take action, and by the end of 1990 the Women’s Health Equity Act was passed, and the NIH established the Office of Research on Women’s Health. In 1991, the NIH undertook the Women’s Health Initiative, the largest project of its kind, seeking data on prevention and treatment of cancer, cardiovascular disease, and osteoporosis. Scientific and professional interest in women’s health burgeoned. Spurred by growing federal investment in women’s health and by the “Cold War dividend” funding of women’s research through the Department of Defense, health activists saw opportunities to collaborate with scientists and professionals who were eager to take advantage of these new research priorities.
Although grassroots women’s health groups have criticized many aspects of federally funded research, and have attempted to rectify perceived problems in consent procedures and inclusion criteria, they have largely supported greater federal funding of biomedical and psychosocial research on women’s health. Thus after two decades of activism, the health movement’s critique of biomedicine and the call for de-medicalizing women’s health care was largely reframed into a bipartisan agenda for parity in funding for women’s and men’s health-related research.
The 1990s became a period of heightened activism. To maximize the likelihood of obtaining federal funding for research on women’s health, scientists and their consumer allies focused on specific diseases—from AIDS to breast cancer. This narrowing of focus was critical for navigating federal funding streams that are tied to specific diseases and organ systems. The new “disease-oriented” organizations reflect the interests of women who expect a high level of professionalism. Facing dual roles as workers outside the home and traditional caretakers inside the home, the highly educated women who support the new single-issue groups may find that their interests lie in organizations that dispense professionally endorsed information, solicit donations, and carry out advocacy efforts on behalf of women. Thus the success of women’s entry into the labor force, changes in cultural ethos, and women’s own commitment to specialization and professionalism may explain why the narrower, highly professionalized women’s health organizations that emphasize parity for women’s health research attract women who do not identify either with broader movements for social change or with feminism per se.
AIDS advocacy groups also raised a new standard of effectiveness for health activists. They not only successfully increased funding for education and research, but gained a voice in how these added appropriations from government and foundations would be spent. Julie Becker, a public health advocate, observes that thereafter, breast cancer advocates and others (ovarian cancer advocates, Parkinson’s patients and their families, etc.) adopted many of the AIDS organizations’ strategies, albeit with a more professional and less confrontational style. A growing willingness to own illness and become “poster people” for cancer, as people with AIDS had done effectively, put a face on diseases that women privately and pervasively feared. Creating strong alliances between consumers, medical professionals, and researchers, breast cancer advocates rallied behind a specific cause that affected many of them directly or through family and friends. Many activists who threw their energy into propelling the such as the national breast cancer coalition into national prominence left behind older-style support groups and feminist health organizations with broader agendas.
Using well-established letter-writing and advocacy strategies, breast cancer activists testified at hearings, held press conferences, and took their case to the NIH. In collaboration with growing bipartisan support in Congress and the scientific community, advocates succeeded in increasing federal funding for breast cancer research from $84 million to more than $400 million in 1993. Breast cancer advocates also insisted that survivors be involved in shaping research agendas and educational efforts and aligned themselves more consistently and collaboratively with scientists than had some AIDS activists or earlier grassroots movement leaders.
The success of breast cancer advocacy quickly created a “disease du jour” climate, where professionals rallied people directly or indirectly affected by particular diseases to lobby for increased funding. Ovarian cancer was the next women’s disease to achieve national prominence. While this approach secures more resources or particular groups in the short run, it pits diseases against each other, turning research funding into a “popularity contest” or war of each against all—to be won by the group that can make the most noise or wield the greatest political pressure. A result may be overfunding some diseases without regard for their prevalence, contribution to overall population health, or likelihood of scientific value. In this environment, orphan diseases will join orphan drugs as unfortunate, but probably unavoidable downsides of market-driven research and medicine.
A question that both Ruzek and Weissman have pondered together is the extent to which these newer groups are part of the women’s health movement—or represent, at least in part, a separate and distinct, although overlapping, wave of activism.
Many grassroots women’s health movement groups see themselves as different from what they perceive to be more professional mainstream organizations, although these differences are not always clearly articulated. After observing a wide range of groups for three decades, Ruzek argues that surviving grassroots advocacy groups can be differentiated from most professionalized, disease-focused groups in the following six ways:
Social movement orientation. The founders of many grassroots feminist groups had ties to progressive or radical social movements that emphasized social justice and social change, to which many remain committed. In contrast, the newer professionalized support and advocacy organizations are typically more narrowly focused on a single disease or health issue, and except for environmentally focused groups such as WEDO, few are integral to broader social movements for social change (although some individual members may have such commitments).
Leadership. Although some women physicians who were critical of medical education, training, and practice were leaders of the grassroots women’s health movement, lay leadership was the norm. The role of physicians relative to others remains a point of contention among some feminist groups. In contrast, the professionalized support and advocacy groups formed in the 1990s had a growing pool of women physicians, scientists, and other highly trained professionals to turn to for leadership.
Attitude toward biomedicine. A recurring theme in the grassroots women’s health movement has been the demand for “evidence-based medicine,” long before this term came into vogue. Major feminist advocacy groups aligned themselves with scientists and physicians who sought to put medical practice on a more scientific basis at a time when it was resisted by many clinicians. Grassroots health activists were critical of the side effects of inadequately tested drugs and devices, particularly early high-dose oral contraceptives, diethylstilbestrol, and intrauterine devices. They also questioned the number of unnecessary hysterectomies and radical mastectomies performed. In short, consumer groups sought to protect women from unsafe or unnecessary biomedical interventions. The professionalized advocacy groups founded in the 1990s focus more on ensuring women an “equal” share of biopsychosocial science and treatment—a stance that concerns many grassroots activists who fear overmedicalization and overtreatment of both men and women. The growing number of women physicians and scientists also facilitates alliances with women consumers because perceived interests in safety and effectiveness make these relationships seem mutually beneficial to many women.
Relationships with corporate sponsors. Older grassroots advocacy groups remain deeply concerned about the effects of drug and device manufacturers sponsoring journals and organizational activities. In fact, this issue is a pivotal source of strain between grassroots groups and highly professional women’s health organizations. While organizations of women physicians and professional advocacy groups rely heavily on corporate sponsorships, older grassroots groups avoid such relationships on grounds that financial ties affect the willingness of groups to criticize sponsors, promote competitors’ products, or address alternative or complementary therapies that might undermine conventional prescribing patterns. Research confirms that sponsorship has this effect. Refusing support from corporate sponsors remains a hallmark of grassroots movement groups, but they struggle financially as a result. Because professional groups accept corporate support from drug and device manufacturers, they have more resources for education and advocacy.
Goals of education. Both older and newer women’s health organizations share the goal of educating women to improve their own health and make decisions about their own care. Grassroots feminist groups, particularly through the 1970s, focused on demystifying medicine and encouraging women to trust their subjective experience of their own health. Having access to larger number of women physicians may have reduced the perceived need to demystify medicine, and professional organizations appear largely concerned with making their highly educated constituencies aware of medical and scientific information.
Lay versus professional authority. Grassroots health groups remain committed to substantial lay control over health and healing and to expanding the roles of such nonphysician healers as midwives, nurses, and counseling professionals. They would involve consumers in all aspects of health policy making, not simply transfer legitimate authority from male to female physicians. In largely professional organizations, women physicians are viewed as the primary societal experts on women’s health matters.
The grassroots women’s health movement organizations leave a legacy of making health an important social concern and educating women to take responsibility for their own health and health care decision making. The movement as a whole has made substantial efforts to influence powerful social institutions—organized medicine, the pharmaceutical industry, and regulatory agencies. In partnership with newer, professionalized equity organizations, health movement activists have taken up mainstream reform efforts that will become increasingly important as medical care is dominated by market forces. Thus the current episode of women’s health activism overlaps with, but is, in many ways, different from the activism of the 1960s and 1970s. These distinct episodes of women’s health activism need to be differentiated and understood in the specific historical contexts in which they emerged, recognizing the distinct roles that their history may lead them to play in the future. Because of the complexity of assessing the safety, effectiveness, and cost effectiveness of medical technologies worldwide, social justice demands ways to include women’s health advocates who are committed to good science that is free from conflict of interest in patient education and health system coverage decisions. Finding ways to ensure women access to such information needs to be a priority for both grassroots and professionalized advocacy organizations.
The next challenge: who will speak for women in the electronic age? The electronic communication technologies foster a climate in which researchers and consumers expect to find information instantaneously and effortlessly. The reliability of information in electronic media is often questionable, however. Until data can be transformed into usable knowledge that can shape human action, the information age will not fulfill its promise. Neither grassroots women’s health movement organizations nor newer professionalized disease agenda groups have adequately grappled with how to communicate with their constituencies effectively. Both types of groups as well as government and mainstream health organizations need to assess, manage, and distribute what each sees as “reliable” health information. Organizational survival may depend increasingly on teaching both “customers” and staff how to use reliable information effectively.
Because of the role of advocacy groups in health policy making in the United States, it is important how they present themselves and are perceived. As electronic media provide all comers the opportunity to claim organizational status in an increasingly “virtual” world, and the number of groups claiming to speak for women increases, how will the public differentiate among them? As we navigate the uncharted “information age,” the ability of the grassroots women’s health movement to remain nationally recognized as critical spokespersons may become problematic because the technology allows anyone with a computer and minimal skill to “create” an organization with worldwide visibly. Most movement organizations are just beginning to move from hard copy resource centers and clearinghouses to electronic purveyors of information. Newer professional advocacy groups that are better funded and more attuned to technological advancements are likely to gain because those who position themselves in electronic media will be perceived as speaking for women. In an effort to address the complexity of electronic media, the boston women’s health book collective included a section on how to assess the adequacy of electronic sources of information in the 1998 edition of Our Bodies, Ourselves.
Who speaks for women’s health in the electronic age very much depends on where one looks—Yahoo, for instance, or Healthfinders, the electronic database the Department of Health and Human Services unveiled for public use in May 1999—and how willing one is to sift through hundreds of self-characterized “women’s health organizations.” Becker, who is researching how Web sites present reliable information, emphasizes that women need to be vigilant in assessing information gleaned from the Internet, because it is so “easy” to log on and “find something.”
Both grassroots and professionalized women’s health advocates need new strategies for remaining key information brokers in an increasingly complex sea of women’s health information. Grassroots health movement groups remain important forces for increasing awareness of women’s health issues and are viewed as trustworthy sources of information by feminist groups in the United States and worldwide. But the cacophony of often contradictory and conflicting medical advice—from all sorts of journals, newsletters, Internet “chat rooms,” and government and private health organizations—is likely to strain the individual’s ability to sort out fact from fiction, established scientific evidence from snake oil, and hypotheses from hype. As it becomes more complex to be a well-informed consumer, the divide between information “haves” and “have nots” will widen. However, professionalized equity organizations, too, face competition from a growing array of institutions that claim expertise in matters of women’s health. The challenge for both types of women’s health groups will be to differentiate themselves for others whose interests lie more in marketing than in meeting diverse women’s health needs.
As we enter the new millennium we must address growing disparities in wealth and access to health insurance among women. Women’s health advocates need to find ways to widen access and equity to care for all women.
Cindy Pearson is the executive director of the National Women’s Health Network. This interview was conducted in May 1999.
TK: What is the central belief of the National Women’s Health Network?
CP: We believe that women need a watchdog organization to look out for their health interests because too many women have received health care based either on someone’s unproven opinion about what works, or on someone’s interest in making a profit. We try to provide information to women who don’t have a source they can trust and, because we don’t take any money from drug companies or companies that manufacture medical devices, we believe we can present an independent voice that isn’t influenced by anything other than what women would consider in making decisions for themselves.
TK: How are women at a disadvantage when they enter the doctor’s office?
CP: Women interact with the health care system much more often than men do. We go when we’re young and healthy for reproductive health services and, because we live longer than men, we’re more likely to have chronic health conditions. So whatever is wrong with the health care system, women experience it more. Over the years that’s led to all kinds of abuses and unnecessary and inappropriate treatment. Because of the lingering effects of sexism in the health care system, women’s true needs are ignored by their health care providers. Women are given the brush-off or are thought of as “just another complaining woman,” so women are at a real disadvantage when it comes to the health care system.
TK: I’ve realized in talking to leaders in the women’s health movement that doctors intervene too much. Can you talk about that a bit?
CP: American life is overmedicalized, especially for women, although also for men. My hope is that our women’s health movement, to the extent that it succeeds in improving health care and making it more humane for women, will apply to men as well. Basically, we have paid a price in this country for making great technological improvements. Personally, I’m delighted that if my body is broken in a car crash there is high-tech medical care available to put me back together. Similarly, acute, raging infections can be treated by wonderful antibiotics. But what I don’t like, and what I’m part of a movement to oppose, is the complete medicalization of the normal aspects of life. For example, we schedule our children to be seen by pediatricians in the first couple years of life more than they’re seen by their grandparents. Those pediatricians prescribe unnecessary drugs, maybe as often as every third or fourth visit, leading these kids, some would say, to more health problems in their future than they would have had in the first place and making those drugs less effective when you really need them. I’m also part of a movement working against turning pregnancy and childbirth into a medical procedure, which happened decades ago in this country. It doesn’t need to happen, and if it weren’t that way, if there were a midwife instead of an obstetrician for every woman, we would have healthier women and babies in the United States. I certainly don’t like it that there’s an entire profession telling women that menopause is the beginning of an estrogen deficiency disease that lasts the rest of their lives and will cause them all kinds of ill health if they don’t take drugs to stop it. Menopause, which is the reverse side of the coin of puberty, is a time of hormonal transition, turmoil, and turbulence; but it’s no more the beginning of ill health than puberty is the beginning of ill health. Each of the examples that I could give you about the medicalization of women’s lives is not supported by scientific medicine, but by a veneration of physicians that, in some instances, is appropriate, but not in this instance. If we can challenge that which I think we have started to do in this country and take back our health from the medical realm altogether, we’re going to be much better off.
TK: What do you think of the current state of medical practice as a whole?
CP: A lot of women think that finding a nice woman doctor is the answer to their problems with health care, but you know what? Women doctors are more doctor than they are woman. Now, I don’t mean to be insulting at all because there are plenty of wonderful women physicians who I respect and love, but the fact is that going through training as a physician in the United States is so intensive and so weighted toward a certain viewpoint, that most people, whether male or female, can only come out with that viewpoint. For the most part our advice to women is to bring knowledge and a questioning attitude to their doctors. You can’t just search for the right kind of doctor or a woman doctor and think that guarantees you the right kind of treatment. One thing that’s particularly frustrating to women who don’t like the medicalization of normal life processes like childbirth and menopause, is how incredibly medicalized most female ob-gyns are. They’re just as likely to do cesarean sections as men; they’re just as likely to intervene in slow labors; they’re just as likely to push hormone replacement therapy to women going through the menopause; and, even though there may be an empathy factor, they may take a little more time, they may listen a little more, they’re—for the most part—still going to offer you the same tried and true techniques that though tried and true, aren’t actually good for our health.
TK: So what changes would you like to see in women’s health care?
CP: When I think of the world as I would like it to be for women’s health, I think of a world in which women start to learn about their health at home: they learn about their bodies; they’re familiar with self-examination techniques; they know home remedies that have been passed down through their family; and they really have a sense of, “I’m the one who knows my body best.” They go on from there to get well-woman care whenever possible from either lay health workers, peer education counselors, nurse practitioners, certified nurse midwives, allied health professionals who are like the people they care for, and who work from an holistic perspective. I would like to see a world in which profit and patentability driving what gets approved by the FDA no longer causes problems. Then the long-standing remedies that we now call “alternative,” but that have been used in many cultures for millennia, the ones that actually work, can be marketed. This would differ from today when no one will invest in these products because they can’t get the return they get from manufacturing a brand name prescription drug. I would like to see the use of physician specialists for primary care fade away so that when women are seeing physicians for primary care, they are seeing someone who supports the healthy-person approach, rather than supporting this test and that procedure, the let’s-dive-in-and-intervene approach. Then we’d certainly have a less expensive, all-around healthier approach to women’s health.
TK: What are some issues that need to be addressed but aren’t always recognized?
CP: Some of the issues that don’t get recognized as women’s health issues have a big impact on younger women who should expect the best of health. One, for example, is the effect of domestic violence on health. It’s only in recent years that domestic violence has been pushed out of the closet that violent men would like to keep it in, and brought out, not only as a social problem, or a problem of violence, but also as a problem that effects women’s health. Domestic violence is one of the leading reasons women go to the emergency room. Another issue, for example, is women’s work in reducing the rate of deaths and injuries caused by drunk drivers through Mothers Against Drunk Drivers. You wouldn’t think of drunk driving as a women’s health issue, but the fact that women got active and came up with an effective prevention strategy of tighter rules for blood alcohol levels has lowered the rate of these accidents and led to better health and longer lives. So you can look at important women’s health issues from a general, public health perspective and find a very broad approach to women’s health.
TK: What do you think of demystifying patients’ health issues?
CP: Thirty years ago if anyone talked about a bad experience they had with the health care system, if they found a friendly ear, the response would usually be, “You need a better doctor, let me give you my doctor’s number,” or “Let me tell you about the person I heard speak.” The response was “Find a better professional” not “Take charge yourself.” The movements—the feminist health movement, the patient’s rights movement, the AIDS movement, and the emphasis on alternative health have all started to shift that to, instead of finding a better professional or a good doctor, educating yourself, taking charge, and being the decision-maker for yourself as much as possible. It’s interesting to me that, in this time when many individual consumers and patients are trying to have more power, we’re seeing more groups focused on health care that are really just trying to change practitioners to different or better professionals, like nicer doctors or more female doctors and researchers. In reality, the core of being in charge of your own health is taking control yourself. There’s a subtle but important difference between groups that say, “We need better, nicer doctors, more female doctors, doctors that know more about alternative medicine,” and groups or movements that say, “Patients and consumers need to be in control.” That’s where the women’s health movement started. People talked about finding a good doctor, but then realized, good doctors aren’t the answer, informed patients are the answer.
TK: So what do you think can be done to give patients a stronger voice and more power when dealing with their doctors?
CP: If you believe in a health care movement with the goal of putting power in the hands of patients, you have to believe in information being freely available to everybody, and the source of information being visible, identified. This means no hidden, sneaky drug company information that masquerades as an educational effort by a nonprofit group, and no fake web sites named as if they’re nonprofit and represent the patient’s perspective, but in fact are financed by drug companies. You know, to really make a movement that changes things around so that people are in control of their own health, people must have information from a trustworthy source.
TK: How does one judge whether or not the information provided by an expert physician or scientist in a medical journal is biased? In other words, how can a lay person be sure that the information from these prominent people isn’t tainted by outside influences from politics or drug manufacturers?
CP: One of the things we always advise consumers is to watch for the source of the information they’re getting, and to see if there’s any potential bias that might be subtly influencing its recommendations. You can hear an eminent researcher or scientist on a morning talk show, or on the nightly news, or you can read a newspaper account of an article that’s been published in a prestigious journal; what you may not hear is that that researcher’s results have been funded by the manufacturer whose product they’re talking about. It’s starting to be possible to occasionally find that information in written disclosures in medical journals. If you have access to a medical journal, you can see who funds the work. It’s very rare to get that kind of disclosure in average, mainstream, broadcast media. The morning talk shows put people on all the time giving their opinion about certain health issues; we activists know just how tightly connected these people are to the companies that make the products they’re talking about. There’s no way you would know that from watching the TV shows. Similarly, the people who are turned to to give their ten seconds of august opinion in broadcast news almost never disclose their connections. We encourage anyone who sees experts with connections to drug or medical or insurance companies acting as if they’re a neutral source to report them, to just call back the media source that’s featured this person and say, “Look, I know that X, Y, and Z companies support this person’s research, and I think you should have put that into your coverage.” The National Women’s Health Network is trying to get a campaign going for a data bank journalists could use to check the financial ties of medical spokespeople that are often in the media. But it’s a challenge because uncovering that information is hard going.
TK: Is overprescription of drugs common?
CP: Years ago we used to complain that the only drugs women could get out of their doctors were tranquilizers; that if women came in with anything from arthritis to back trouble to endometriosis they would get a literal or verbal pat on the head, and a prescription for tranquilizers. I think that’s changed somewhat, although there are still lots of prescriptions written for mood-altering drugs. Drug companies have realized that women are a fabulous market for prescription drugs: women are concerned about their health; they’re used to seeing the doctor frequently; they like to stay informed; and now they’re being targeted in the same way that Nike targets young adults for their shoe ads. Women are being targeted with drug ads to convince them that it would be a good idea to take any number of drugs on an ongoing basis.
TK: So what are the main consequences of that targeting by pharmaceutical companies?
CP: “There’s no drug safe enough to be worth taking if you don’t need it.” That axiom comes from Dr. Philip Corfman, a Food and Drug Administration medical officer with a lot of years of experience in women’s health. The basic point is that if you’re in dire straits, and a drug has been shown to work, it’s probably worth taking, even if it has some pretty serious side effects. But if you’re healthy to start with, and what you need from the medical system is a way in which to manage your reproduction, or a way to go through the menopausal transition more comfortably, you don’t want to deal with any extra risks.
TK: What are the effects of pharmaceutical industries advertising directly to the public?
CP: Unless you’re a hermit, you know that the rules have changed about advertising brand name prescription drugs. There are ads on TV that name drugs, and there are ads that don’t have any of the long list of warnings and details that used to be in tiny fine print in the back of magazine ads. For consumer groups, that means a mixed blessing. Thirty years ago, we were fighting desperately for people to get information about the drugs they were taking. How can we say that it’s bad to get information about drugs through an ad? Shouldn’t we be for information? But what is information that’s in an ad; is it actually informative, or is it really a sales technique? Our experience so far with direct-to-consumer ads on television is that it’s much more of a sales technique than it is informative or educational in any way. Ads naming the drug have been allowed on television for a little less than two years now. In that time, the FDA has found that over half of the pharmaceutical companies that advertise their drugs on television have been breaking the rules: they exaggerate the benefits; they minimize or don’t mention the risks; they try to claim that the drug works for groups of people in whom it hasn’t been studied; and they try to mislead the public in other ways. The trouble is that the FDA has no power to preview these ads before they’re on the air. They don’t have nearly the staff or resources they need to watch all these ads. Many times they take action after receiving a complaint from a group like ours; all they can do is tell the company to pull the ad. Maybe the drug company was likely to change that ad anyway to get a fresh image out before people’s minds. But the damage has already been done when a consumer sees a misleading ad on television, even if it’s later pulled by the FDA. We’re concerned that in the long run, something needs to change in terms of laws and regulations so that at a minimum, the FDA has the power and the resources to review ads before they go on TV. In the short term, patients and consmers need to insist that if they even have the faintest glimmer of talking to their doctor about a drug because of direct advertising, they need to insist that they get written medication guides produced by the government, or by an independent consumer group, before they swallow their first pill. It’s vitally important that people see the contraindications to taking a drug in writing. The women’s health movement that in the 1970s held a memorial service in front of the FDA proved that if women could get their hands on information, they could make the use of a drug safer by ruling themselves out if it was too risky for them, or quickly getting off it if they had any complications. If patients and consumers would insist on that kind of written information now, we could counterbalance the hard sell that’s going on with television ads for brand name drugs.
TK: The Network has had some major successes in the past few years involving the National Institutes of Health, the FDA, the National Cancer Institute, to give some examples. Can you discuss some of these?
CP: Some of the things the network has tried to accomplish in the last few years have really been about the misuse of research that puts healthy women at much higher risks than necessary. We’ve been concerned that too many research trials have been designed by short-sighted doctors used to dealing with dangerous medications, day in and day out. They don’t seem to realize that, in designing a prevention study with healthy volunteer subjects, they should be starting with the safest approach possible. We have complained bitterly about the design of the tamoxifen trial for healthy women. We got the consent forms changed and women really listened to us; many that were at low risk actually stayed out of that trial. Another accomplishment was that we told the National Institutes of Health that they were making a mistake in the design of their estrogen replacement therapy study in healthy women. They originally wanted to ask women to volunteer to take estrogen, which is known to cause cancer of the uterus. We told them, “This is wrong, this is ethically wrong; even in a research environment, you shouldn’t be asking women to put themselves at risk with a known cancer-causing agent.” They finally listened to us, although not until two years later, and after much cost and bureaucratic hassle. But they did change the way they organized that trial. So I think those are some of the accomplishments that have really made a difference in the last few years: protecting healthy people from unnecessary risks in government-funded research.
TK: There are many controversies surrounding breast cancer; can you tell me what some of the most prominent ones are?
CP: Breast cancer has been controversial since the first courageous women started talking to each other about it. Even now that it’s a big, justice-based social movement that has mobilized millions of women to agitate for more funding for research, for better treatment, for more respect for survivors, all those things; so many issues related to breast cancer are controversial. One example is that even a good ten years after it’s been accepted by leading researchers and policy makers that removing the cancer itself, in a lumpectomy, is as likely to lead to the woman’s survival as removing her whole breast, many doctors still routinely do mastectomies. Many hundreds of thousands of women are having mastectomies, having their breasts removed, who don’t need that procedure. That’s one area that’s still controversial. Another area is how to treat advanced disease, because in contrast to women who are diagnosed with their breast cancer early and have good odds of surviving as long as women have been followed so far (about fifteen or twenty years), women whose cancer is diagnosed in an advanced state, or whose cancer recurs in another part of their body, don’t have any treatment that’s been shown to work for any considerable length of time. A few women do survive for many years; but most women who have advanced breast cancer face continued progression of the disease to the point where it kills them. These women want to live, and their doctors want to help them find a way to live. And all they’ve been able to offer so far is more of the same: literally, more chemotherapy. If some chemotherapy can’t stop advanced cancer, well maybe lots of chemotherapy could. The trouble is that lots of chemotherapy by itself can kill you because it kills the cells in the bone marrow which produce new blood cells and new infection-fighting cells. A very expensive, elaborate procedure designed several years ago has been shown to be effective in cancers based in the blood: high-dose chemotherapy followed by a bone marrow transplant. Very soon after that was shown to be effective in cancers based in the blood, it was offered to women with breast cancer, mostly out of a feeling of “We’ve got nothing else, so let’s give it a try.” It became very controversial: it’s extremely expensive (in the realm of $100,000), it has fatal side effects itself. Even in the best centers that do it frequently, a percentage of women die within the following couple of weeks as a result of this treatment. Yet women were told, “This is your only chance; this has a twenty-five percent chance of creating a complete remission as opposed to a three percent chance if you just have regular chemotherapy.” So women fought for it: sued their insurance companies, lobbied Congress, got state laws passed to mandate that this be covered. In the last several years, about twelve thousand women in the United States have had this procedure, but sadly, only about a thousand of them received it in a clinical trial, so it’s taken all this time and all this fighting to find out that it’s not a better treatment. We now have five studies that, with the exception of one, have found the high-dose chemotherapy approach is no better than regular chemotherapy. So we’re really left back where we were eight, nine, or ten years ago. It’s a sad commentary on the way our medical system approaches diseases like cancer. They keep trying the same approaches even when they haven’t worked. We’ve wasted a lot of time that could have been spent looking for approaches that do work.
TK: In the magazine MAMM, you were quoted as saying, “What makes it harder for the breast cancer movement than for other movements (such as the AIDS movement) is women’s issues about putting themselves first.” Can you comment on this?
CP: You know, over the years, there have been so many different kinds of health movements, and when people ask me to comment on the women’s health movement, or women-specific disease movements like the breast cancer movement, I’m always struck by how much harder it is for women to sustain the kind of energy that men feel so free to give to the causes that affect them. The AIDS movement, for example, liberated tremendous amounts of energy from individuals who gave several nights a week to be part of Act Up or other AIDS projects. On the other hand, the breast cancer movement sparked the same kind of fire in women, but so many women found themselves paying a terrible cost in terms of their families. There were the judgments about them not spending time with their kids because they were gone every night at these meetings; they weren’t with their boyfriends or husbands. Women are so much less free to put themselves first, even when their own lives depend on it. So it’s really been impressive to me that, fighting against such odds, the breast cancer movement has strongly sustained itself throughout this decade. Because it’s not easy to be a woman feminist health activist, let me tell you.
TK: To what do you attribute the success of the National Women’s Health Network?
CP: The National Women’s Health Network is small, poor, and beleaguered. We’re often in a David-versus-Goliath situation; the only reason we have existed for nearly twenty-five years is because we represent the heartfelt wishes of a strong constituency of individual women (and some of the men who support them) who want a more humane health care system for both women who receive healthcare and women who provide it. They keep us alive with their support and their input, and we go out and try to take their words and make them heard by the people in power. We do a good enough job for our members to keep us alive.
Sunny Daly, “On Young Feminism,” 2008. Original for this publication.
At twenty-six I am fortunate to have had diverse experiences with movements for women’s empowerment in the global West. As a girl, my mother encouraged my use of the word “feminist,” and made it clear that I could literally be anything I wanted to be. In academics, I thought it silly to focus on women because aren’t women a part of regular history and regular literature anyway? It took me until my senior year of college to realize that I had learned far too little about us through this strategy, so I focused my year-long research project on women to see how it felt. Suddenly, I knew what I wanted to do with myself—I had direction in life! My thesis, a history of the first birth control pill in America, brought me more contacts and insight into this world of feminism than I imagined possible, and for the first time I found my attention span lengthening. I left school with a goal: to make a living helping to empower women. This was not easy, but after enough dues-paying to drain the waitressing income and a few transcontinental moves, I landed a full-time position in a national women’s organization.
Too quickly, I became frustrated. Unwieldy organizational structures fraught with inefficiency, wayward and unfocused agendas for progress, stunted respect, and the lack of substantive work available for my level were revealed. Though many individual mentors inspire me time and again, I worry about how I will maintain my “professionalized feminism” without losing faith in the movement. What I see is a lot of time spent reinventing the wheel, competition for funding, and brushing off of new ideas. The serious lack of diversity and rare collaboration is alarming. Many projects do not feel relevant to me and I feel slighted considering my profound commitment to the organization (and for a salary that limits life outside of work).
This job is a first step, I realize, and I am not about to quit. My generation will untangle the problems and address our frustrations in many ways. Personally, I’ve decided to look abroad to learn about other potential paths for the movement. There are many ways of achieving empowerment and many definitions of feminism, power, and success. I wish to understand this heterogeneity and learn best practices, if you will, from within women’s own contexts in other parts of the globe. I believe that learning about the rest of the world will not only help me to find my own fulfillment in this field, but it will help me to make real contributions by highlighting the true urgencies and successful (and unsuccessful) ways to tackle them. Others, I see, will absorb institutional memory to keep today’s feminist organizations running and they will be candidates for succession when that day inevitably comes. Still others will lose patience and take their talents to other sectors, to be waitresses or executives, but, not having lost their faith, they will instill our feminist values in bosses, coworkers, mentees, and children.
Some feminists of the second wave fret about the lack of younger women in the movement and our weak dedication. Really, there are many, many women my age committed to building upon the progress we’ve so fortunately inherited (and yes, we know we’re lucky). Many of the questions and solutions have changed, however, and the integration of new, often more global, perspectives is a very real priority to us. It is inevitable that we will lead in time but this should not be taken as a threat. Rather, it is an opportunity to expand and texturize the meaning of feminism and the goals we pursue under its banner.
National Black Women’s Health Project, excerpt from Our Bodies, Our Voices, Our Choices: A Black Woman’s Primer on Reproductive Health and Rights, Washington, DC: National Black Women’s Health Project, 1998. Reprinted by permission.
Since its inception in 1981, the National Black Women’s Health Project (NBWHP) has worked to bring together women to talk about our experiences, hopes, and dreams—and to share information that will enhance our lives and health. This primer is designed for black women to use as an introductory policy reference on reproductive health issues. It contains historical background, the contemporary context, and NBWHP policy statements. We hope it will stimulate greater interest and understanding of reproductive health issues as well as encourage women to take positive action for themselves, their families, and their communities. There is much to learn and much to do.
The principle of self-help guides our fundamental belief that every woman—whether heterosexual, bisexual, or lesbian—may substantially increase her chances of achieving overall health and well-being if:
She is knowledgeable about her body
She is aware of her rights and empowered to ask necessary questions
She knows that she is entitled to information and services that are delivered with dignity and respect
We also believe that when women appreciate how history and contemporary events combine to impact our ability to make decisions and to have choices, they will want to get politically involved on matters close to home, across the nation, or around the world.
Historically, all women in the United States have struggled to achieve reproductive health and reproductive rights. While this struggle has been most challenging for poor women and women of color, the fact that blacks were brought to this country in chains, sold as slaves, and held in bondage for generations has had a deep and enduring impact on our lives.
For 244 years, black women in America suffered the harsh realities of slave labor, forced breeding, and the wrenching separation of children from mothers and other loved ones. Since emancipation, we have been burdened by a racist mythology that distorts our sexuality and paints us as loose, immoral, and unfit to be mothers. Over time, we have borne the brunt of a dizzying array of racist policies and programs aimed at controlling our reproduction. In the past 30 years alone, we have dealt with forced or involuntary sterilization, court-ordered insertion of long-acting contraceptives, deadly illegal abortions, punitive welfare policies, and arrest and prosecution instead of treatment and compassion for using drugs while pregnant … the list goes on.
Out of this dismal experience, black women have grasped a fundamental truth: unless and until we are free to control our own fertility, we will never be able to take care of ourselves or our families, or take full advantage of opportunities in education, employment, and society at large.
Spurred on by this truth, black women have been involved in the movement for “voluntary motherhood” and reproductive rights since the turn of the century. Racism and discrimination meant that our efforts were largely within our own community, although over time, a number of black women have played prominent roles in the national reproductive rights movement.
Today, most people think of the phrase “reproductive rights” as the right to choose an abortion. Black women have always understood that the correct phrase is “reproductive health and rights”—that our struggle goes beyond our ability to decide whether, when, and how to have a child.
Black women understand that genuine reproductive health and rights are possible only when society allows healthy mothers and healthy babies to flourish. Genuine reproductive health will be achieved when society ensures that young girls and women have access to all necessary information and basic services, from health care and housing to education and employment. Genuine reproductive rights will be achieved when women can make decisions about their sexuality and reproduction that are free from coercion, actual or threatened violence, soul-crushing addictions, and despair—and when society ensures that the resources necessary to support those decisions are readily available.
There are many compelling ways to bring this expansive view of reproductive health and rights into reality. Black women put creative energy and volunteer time into the prevention of violence and homelessness, the promotion of prenatal care and mammography screening, and much more.
Those of us who have been active in the reproductive rights movement have been vital partners in the effort to expand these rights and broaden women’s choices. But we have also been vocal critics of options that present problems for many women, such as technologies that have negative side effects or do not provide protection against sexually transmitted diseases, as well as programs that do not offer an ongoing support system for women.
Our historical experience has taught us to examine any new reproductive technology or social program through our triple screen: race, class, and gender. As a result, our view often diverges from the mainstream. Unless we are convinced that a new technology or program will genuinely add to a woman’s choices and enhance her health and well-being, we voice our opposition and urge all black women to consider seriously the facts before accepting that technology or program.
As women of the African diaspora, we have traveled great distances, literally and figuratively. We have survived and often thrived. Let us celebrate our lives as black women—vital, vibrant, and strong—and move forward to secure genuine reproductive health and rights for ourselves, our daughters, and all our sisters.
Julia R. Scott, RN
President and CEO,
National Black Women’s Health Project
HISTORICAL EXPERIENCE: RACIST MYTHOLOGY
Racist mythology has defined African-American sexuality and childbearing since slavery. Both African-American women and men were labeled “naturally immoral” and considered sexually irresponsible. After slavery, African-American women were referred to as “Jezebels” and portrayed as promiscuous, “bad” mothers who, unrestrained in their childbearing, passed these same traits on to their children. At the same time, African-American women were involved extensively in child care and rearing of white children as wet nurses and nannies.
For centuries, black women were caught in a vicious catch-22. First, whites claimed we were sexually “loose” and therefore fair game for white rapists and sexual predators. Then, our sexuality was blamed for helping to “cause” black men to rape white women, an alleged act which led to brutal, often fatal consequences for many of our men.
CONTEMPORARY CONTEXT: SEXUALITY, SHAME, AND SILENCE
One consequence of our legacy from slavery and the continuing public mythologies about African-American sexuality is that many of us have deeply buried the interconnectedness of our emotional, sexual, and reproductive experiences. Our sexuality is often associated with feelings of shame. Problems related to our reproductive health—from unwanted pregnancies or infertility to cancers of the breast or reproductive organs—are usually kept private.
In addition, mainstream cultural taboos tend to prevent discussion of healthy sexuality among all women. Attacks on public school, family life, and sex education programs by some conservative and religious fundamentalists have severely limited opportunities to help adolescent girls (and boys) at a crucial time in their sexual development to understand and practice decision-making and negotiation skills. Oftentimes, the premises of these attacks are accepted without in-depth examination of cause and effect.
This “conspiracy of silence” has an invisible yet potent impact on the overall health and well-being of black women. When we are discouraged from asking questions and when we cannot discuss important issues related to our reproductive health and sexuality, our health and that of future generations is jeopardized. Lack of knowledge about sexuality and reproduction is often cited as a major reason that young women engage in irresponsible sexual practices, resulting in high rates of unintended pregnancies and sexually transmitted infections. However, knowledge alone is not the answer either. Confidence, self-respect, and awareness of the benefits of delayed gratification are essential elements as well.
NBWHP POLICY STATEMENT: HEALTHY SEXUALITY BEGINS WITH EDUCATION
A vital component of sexual health is access to age-appropriate family life and sex education programs. All humans are sexual beings from the moment of birth, so it makes sense that attention to our sexual health should begin at the earliest possible age.
African-American girls and adolescents have a critical need for adequate knowledge and understanding of sexuality for two reasons: they are vulnerable to internalizing the negative stereotypes about black female sexuality; and they are likely to be subjected to sexual abuse or violence. In fact, one in three black women report sexual abuse at some point in their lives.
Programs for boys are equally important for factual knowledge and understanding about responsible sexuality, respect for self, and others. We must teach all children appropriate ways to show love and affection and encourage them to disclose and negative incidents in order to reduce their potential for sexual abuse.
NBWHP supports age-appropriate sex education in multiple settings, including public and private schools, as well as efforts to help families and caregivers to provide accurate information regarding sex and sexuality to their children. Sex education and family life skills should be taught in schools, churches, community centers—as well as in the home—by caring adults. This is the first challenge, and often the most critical one, for achieving a life of good health.
African-American women must take the lead in fostering sexual health for today’s young girls and for the generations to come. As adults, we can play an essential role in helping young girls and adolescents to develop healthy attitudes and feelings about their bodies and their sexuality. We can do this by willingly and openly discussing any or all topics related to sexuality, by modeling respectful and loving relationships with others, and by demonstrating love for ourselves through healthy behaviors.
HISTORICAL EXPERIENCE: FORCED BREEDING
During slavery, black women in America had no control over their reproductive lives. We were subjected to forced breeding, rape and sexual abuse, and our families were torn apart on the auction block. As slaves, we were valuable for our field labor and as reproducers. Our babies were the “new stock” for slave owners who depended on a continual supply of infants after the import of new slaves was banned in 1808.
Centuries before modern medicine was able to define and treat the fetus separately from the mother, slave owners saw the fetus as a distinct piece of property with great potential value. When a slave owner would punish a pregnant slave, he had to balance his interest in disciplining his worker with his interest in gaining a healthy new infant. The solution became a common practice throughout the South: the pregnant slave was forced to lie down in a depression in the ground so that her fetus would not be injured while she was bullwhipped.
Babies are our hopes and wishes for the future, symbolizing love for our partner, for our families—for life itself. Having a baby that you want is one of life’s most glorious gifts. There is a delicious excitement and sense of wonder.
The most powerful act of “resistance” by slave women was ensuring the survival of their children. An enduring legacy from our days in slavery is the strong African-American tradition of forging communal bonds among nonrelated individuals, of taking in children without parents, of caring for one another in the face of extreme odds. This spirit of life-affirming “resistance” continues in our community today.
CONTEMPORARY CONTEXT: HEALTHY MOTHERS = HEALTHY BABIES
The intergenerational cycle of poverty and near poverty makes it difficult for many African-American families to build and maintain preventive health care habits. An estimated 25–30 percent of inner-city African-American women receive little or no prenatal care during their pregnancies. This is oftentimes due to lack of access to health care services, inadequate care when health care is delivered, language barriers, and/or a lack of information, especially among pregnant adolescents.
Prenatal care is essential for a safe pregnancy and a healthy, full-term infant. In addition to monitoring the pregnant woman’s diet and encouraging her to quit smoking, prenatal care includes screening for sexually transmitted diseases, high blood pressure, gestational diabetes, abuse of alcohol and illegal drugs, and domestic violence. When the health care needs of childbearing African-American women are not met, there are grave consequences.
Scientists at the Centers for Disease Control and Prevention (CDC) report that African-American women are four times more likely to die from pregnancy-related causes than white women. On average, an African-American woman dies every two and a half days in the United States from pregnancy-related causes. Many of them could be saved by regular checkups during pregnancy.
Infant mortality rates in African-American communities resemble those in developing nations. Black babies die at the rate of 6,000 more per year than white babies in the same geographical area.
The primary contributing factor to infant mortality is low birth weight. Surprisingly, the frequency of low-birthweight babies is not limited just to poor women in medically underserved areas. Middle-class black women have more low-birthweight babies than white women of the same socioeconomic class. And, approximately one-quarter of all pregnancies in women of every socioeconomic class and race end in miscarriage.
The fact that high rates of infant morbidity and mortality span all economic classes suggests that elements other than poverty are to blame. Women who are happy to be pregnant are more likely to seek and get medical care before their baby is born (prenatal care). But when our pregnancies are unplanned or unwanted, we often experience mixed feelings and denial—both of which can cause a delay in seeking appropriate medical care for ourselves and the developing child.
NBWHP POLICY STATEMENT: UNIVERSAL PRENATAL CARE IS ESSENTIAL
It is a simple formula: Healthy mothers have healthy babies. Prenatal care truly begins with the health of the mother when she is a child. NBWHP supports lifelong access to adequate medical care, decent housing, and educational opportunities, as well as efforts to promote good nutrition and exercise and opportunities to develop healthy behaviors.
NBWHP opposes mandatory drug testing of pregnant women. Such testing is not an appropriate component of maternal care. However, voluntary drug screening, when accompanied by appropriate counseling and referral to professional treatment, is critical for the health of mother and infant. For women who are willing to seek treatment, there must be adequate access to treatment programs and facilities for pregnant women and women with children.
HISTORICAL EXPERIENCE: “VOLUNTARY MOTHERHOOD” PROMOTED
Black people have always recognized the value of spaced and well-timed births as a way to reduce high maternal and infant mortality rates and strengthen family life. At the turn of the century, black women were controlling their own fertility, chiefly by marrying late, having fewer children, and using contraception and abortion. The black women’s club movement had emerged as a dominant force in promoting new social and family values among African-American women. The clubs supported “voluntary motherhood” and shared information about contraceptives.
Historically, babies in this country were delivered at home. The vast majority of babies born in the United States were delivered by midwives during home births. The “granny” midwife was a respected figure in the black community, especially in rural Southern states where she was the only person who could help mothers—black and white—to deliver their babies. Grannies would often stay for several days with a mother, helping to care for other children and the house until the mother regained her strength. Many grannies were illiterate; their traditions and knowledge of herbal remedies and medicines were shared and passed along to the next generation through oral stories and apprenticeships. However, by the middle of this century, doctors succeeded in taking control of childbirth by banning midwives and prohibiting women from attending medical school.
CONTEMPORARY CONTEXT: BIRTHS TO OLDER WOMEN INCREASE, TEEN PREGNANCIES DECLINE
Between 1980 and 1994, the birth rates for all women remained fairly stable, at an average of 21 per 1,000 for black women, and 15 per 1,000 white women. However, increasing numbers of black women are choosing to give birth at later ages. The number of births for African-American women ages thirty to forty-four increased from 1980 to 1996, while births to African-American women ages twenty-nine and younger decreased. The percentage of intended births increases with the age of the mother. In 1995, only 23.4 percent of births to black women under twenty were intended, compared to 51.8 percent for women ages twenty to twenty-nine, and 70.2 percent for women ages thirty to forty-four.
Teenage pregnancy rates—although declining during the 1990s—still remain high, especially for young black women. Half a million adolescents give birth each year. In 1996, births among girls aged fifteen through seventeen were more than twice as likely among African-American teenage girls than white teenage girls. Birth rates among African-American girls younger than fifteen were 4.5 times higher than for white girls.
Among black teenagers, 75 percent of pregnancies are “unwanted” or “mis-timed.” This is a major concern because of the potential social and economic consequences as well as the health effects. Indirectly, patterns of poverty and low educational attainment often become solidified as a result of early childbearing.
NBWHP POLICY STATEMENT: WOMEN HAVE THE RIGHT TO GIVE BIRTH
NBWHP supports the availability of wide options for childbirth, as well as the education of women about these options in advance. In some areas, women have a choice of settings for delivery, ranging from hospital operating rooms or birthing centers to their own homes. Many women are asking nurse-midwives to help them prepare for childbirth and to assist during labor and delivery. Some women prepare for natural childbirth by taking birthing classes where they learn breathing and relaxation exercises; at the time of delivery, some women choose to have little or no pain medication. Others opt for a stronger pain reliever. Pregnant women have a right to participate in the decision about where and how they will have their babies.
In the United States, one in four babies is delivered by cesarean section. It is the most frequently performed major surgical procedure among reproductive-age women. There are several medical conditions that lead to C-sections; however, non-medical factors also influence the decision. Women who have private medical insurance, who are patients at private (rather than public) clinics, and who are married, older, and/or in a higher socioeconomic bracket are more likely to have c-sections. Nonmedical reasons include the avoidance of pain, convenience, financial incentives for providers (C-sections cost nearly twice as much as vaginal births), and fear of being sued for delivering an infant with a poor outcome after prolonged labor.
A C-section is major surgery and can result in infections, hemorrhage, injury to other organs, and other physical and psychological complications. The maternal mortality rate for C-sections is two to four times greater than that for vaginal deliveries. C-sections not necessitated by medical reasons increase the risk to the infant of premature birth and breathing problems. C-sections can also interfere with breast-feeding and the establishment of the mother-child bond. For all of there reasons, NBWHP opposes the use of C-sections for non-medical purposes.
NBWHP also opposes efforts to limit reproductive choice, such as recently passed welfare reform legislation that includes “child exclusion” provisions to discourage women receiving welfare from having children. Instead of providing the necessary services, job-training opportunities, education, child support enforcement, and transitional benefits to poor families, the “child exclusion” provisions deny increases in benefits that are needed to raise an additional child. This punishes welfare recipients for choosing childbirth. Ironically, Medicaid covers pregnancy, childbirth, and sterilization but does not provide funds for abortion.
Not only are fertility rates of welfare recipients lower than those of the general population, but the longer a woman remains on welfare, the less likely she is to give birth. Furthermore, the great majority of pregnancies among women on welfare are unintended.
There is no evidence to support the assumption that poor people’s childbearing decisions are motivated by minimal grant increases or incentives. There is evidence, however, that teens are more likely to have children when other life options—such as education and jobs—are unavailable.
As the discussion of welfare reform inevitably turns to “individual responsibility,” NBWHP insists that the federal, state, and local governments also act “responsibly” and be held accountable for their failures in providing the economic and social conditions that allow all citizens to have a decent standard of living.
HISTORICAL EXPERIENCE: SUPPORT OF BIRTH CONTROL, DISTRUST OF MEDICAL COMMUNITY
By the end of the nineteenth century, black fertility rates had plummeted by one-third. This was often blamed on racial discrimination, inadequate wages, poor nutrition, substandard housing, and lack of medical care for most African Americans. While these circumstances did in fact exist, ample evidence also indicates that many African Americans were using “folk” contraceptives and abortion.
The fledgling birth control movement of the early twentieth century drew initial interest and support among black women and men. As Margaret Sanger’s birth control movement grew, many black women insisted on expanding birth control services in their communities; they were enthusiastic users of the few clinics across the country that were available to them. Because most clinics were operated by whites, some blacks were suspicious that birth control would be used for genocide or that blacks would be subject to reproductive medical experiments. Despite such opposition and fear, black women generally supported family planning and organized to promote it in their communities throughout the first half of the twentieth century.
As part of the 1960s “war on poverty,” the federal government began to establish family planning clinics in predominantly black urban areas. Black nationalists (mostly men) attacked these programs as genocide-suicide—but black women once more affirmed their right to make their own reproductive choices and resisted efforts to shut down these clinics.
The most notable historical event with regard to African Americans and sexually transmitted diseases is the notorious Tuskegee study. In 1972, the US Public Health Service admitted that for the prior forty years, it had been studying the course of untreated latent syphilis in hundreds of poor black sharecroppers in Tuskegee, Alabama. The physicians conducting the study deceived the men about their condition and deliberately withheld effective treatment for the disease, even after penicillin became available.
Published medical reports estimate that twenty-eight out of one hundred men died as a result of their syphilis. The wives and families of these men also were affected. Studies later showed that twenty-seven out of fifty wives tested positive for syphilis. As a consequence of the research study in Tuskegee, many African Americans continue to distrust the medical and public health authorities.
CONTEMPORARY CONTEXT: UNINTENDED PREGNANCIES, STDS, AND HIV/AIDS AFFECT BLACK WOMEN DISPROPORTIONATELY
High rates of unintended pregnancy, abortion, and teenage childbearing among black women speak to the great need for better access to and use of effective contraceptives. In addition, with skyrocketing rates of HIV/AIDS and other infections, it is urgent that black women protect themselves from unwanted pregnancy and sexually transmitted diseases (STDs) at the same time.
In 1996, African Americans accounted for 78 percent of all reported cases of gonorrhea. African-American teenagers aged fifteen to nineteen have infection rates that are twenty-four times higher than whites. Among young black adults aged twenty to twenty-four, the rate is thirty times higher than whites.
The highest rates of chlamydia infection are found in individuals aged fifteen to nineteen and twenty to twenty-four for all racial and ethnic groups. Blacks are infected at much higher rates than whites.
Up to 20–30 percent of sexually active Americans of all races are thought to be infected with human papillomavirus (HPV), which causes genital warts.
It is estimated that 45–60 million Americans are infected with herpes genitalis. About 80 percent of African-American women and 60 percent of African-American men will be infected with herpes at some time in their lives.
Rates of syphilis infection are 62 percent higher for African Americans than whites. Between 1985 and 1990, this disease increased by 230 percent among African-American women.
In 1995, 10.6 percent of all black women were treated for pelvic inflammatory disease (PID), compared to 7.2 percent of white women.
The fastest-growing group of persons infected by HIV—the virus that causes AIDS (acquired immune deficiency syndrome)—are heterosexual women. In 1996, African-American women comprised 56 percent of AIDS cases among women in the United States. In the majority of cases, they were infected as adolescents or young girls.
Women are at greater risk than men of contracting sexually transmitted diseases and HIV/AIDS because of our anatomical differences. The risks are even higher for adolescent women due to age-related physiological changes in the cervix. Lesbian and bisexual women are also at risk of spreading STDs and HIV/AIDS through the exchange of bodily fluids.
STDs are more difficult to diagnose and less likely to be treated in women. If undiagnosed and untreated, STDs can do great long-term damage to a woman’s health, causing premature delivery, stillbirth, infertility, and genital cancers. The presence of an STD—whether it has open, visible sores or is invisible and asymptomatic—will increase a woman’s risk of contracting HIV/AIDS.
A wide range of contraceptive methods are available that can greatly reduce the risk of pregnancy; however, few also protect against STDs.
Barrier methods—including the male condom, female condom, diaphragm, and cervical cap—prevent sperm from reaching the egg and protect against STDs. Used correctly, latex male condoms (not those made from animal tissue) offer the best protection against STDs and HIV/AIDS and are most effective when used with a spermicide containing nonoxynol-9. Unfortunately, spermicides may irritate the vaginal lining of some sensitive women, making them more susceptible to HIV/AIDS infection through the broken skin.
Hormonal contraceptives—including the pill, intrauterine device (IUD), Depo-Provera (“the shot”), and Norplant—are an effective way to prevent pregnancy. However, they may not be appropriate for women with certain health conditions, such as high blood pressure or a history of cancer or diabetes—and they do not protect against STDs or HIV/AIDS.
“Emergency” contraception (ECP, or the “morning-after pill”) is used in the event of unprotected sex, contraceptive failure, rape, or incest. The Food and Drug Administration (FDA) has approved a product for emergency contraception called Preven. The Preven contraceptive kit is currently available by prescription from doctors and other health care professionals.
The only 100 percent guarantee a women has against unwanted pregnancy and STDs is celibacy (no sexual activity), a practice often encouraged by religious groups for unmarried people.
NBWHP POLICY STATEMENT: CHOOSE BIRTH CONTROL, DISEASE PREVENTION, AND HEALTH CARE
NBWHP supports universal access to health care and family planning services for all women. Black women should insist on full and accurate information from their health care providers about all contraceptive options, including side effects, health risks and benefits, costs to obtain the method, procedures, and costs necessary to have a method removed.
Much attention has recently been placed on new hormonal contraceptive technologies that provide long-term protection from pregnancy without the need to “think about it.” It has been argued that these methods are “liberating” for women. NBWHP believes that if ever there was a time for women to think carefully about sexual activity, it is now. Women need to own the fact that sexuality is a natural and normal part of adult life. We need to think carefully—and ahead of time—about whether and when we will engage in sex and how we will prevent unwanted pregnancies and the spread of infections. All women must become comfortable with their bodies and their sexuality so that we can take control of our decision making around the issues of sexual health and reproduction.
NBWHP believes that barrier methods—used properly and every time—should be considered as the first choice for contraception as well as disease prevention. Barrier methods can be integrated into sexual foreplay, and the rewards include increased intimacy with one’s sex partner and greater comfort and familiarity with one’s own body and sexuality. Family planning programs and health care providers must invest necessary time and resources to ensure that women are encouraged to use barrier methods to reduce their risk of STDs and HIV/AIDS.
Sexually active African-American women of all ages—whether heterosexual, bisexual, or lesbian—need a strong foundation of accurate information as well as support for practicing safer sex if we are going to win the battle against HIV/AIDS and STDs. NBWHP supports HIV/AIDS education and STD prevention programs as the best weapons against the continuing spread of STDs and HIV/AIDS throughout all segments of the population.
NBWHP is also a strong advocate of efforts to ensure that AIDS diagnosis and treatment services are available for early HIV detection within geographic and fiscal reach of at-risk populations such as low-income women and their families, rural dwellers, and the homeless. Outpatient care must entitle patients to receive services appropriate to their needs, including mental health care, housing assistance, and family services, as well as clinical and hospice care.
Early detection and medical intervention are now providing many HIV-infected women a greater life expectancy. Unfortunately, women and adolescent girls infected with HIV receive fewer medical services, such as medication, hospital admissions, and outpatient visits, than similarly diagnosed men. An asymptomatic, HIV-infected female is 20 percent less likely to receive azidothymidine (AZT) than an asymptomatic, HIV-infected male. A female with AIDS is also 20 percent less likely than a male injection drug user to be hospitalized for AIDS-related conditions.
Statistics demonstrate that African Americans do not receive enough early, routine, and preventative health care. Hospital emergency rooms and clinics are a much more common source of medical care for African Americans than for whites, and 20 percent of African Americans (compared to 13 percent of whites) report no usual source of medical care. NBWHP calls for improvements in the health care delivery system to ensure that women of color have access to quality, affordable preventative services, early detection and treatment, and appropriate follow-up care and counseling.
There is currently a debate about making the pill—which is now a prescription drug—available as an over-the-counter drug. NBWHP supports keeping oral contraceptives as prescription drugs because the annual health care visit for birth control pills is the only time many black women have access to medical services. Furthermore, the side effects of nausea, weight gain, and depression may cause a woman on the pill to need more frequent checkups. Black women have high rates of obesity, diabetes, and high blood pressure and therefore require adequate screening before using the pill. NBWHP is not confident that pharmacists are sufficiently trained to screen customers who would buy the pill over the counter. In addition, pharmacists may not have the time to thoroughly counsel customers.
A seminal issue for the reproductive health and rights of African-American women has been the marketing of long-acting contraceptives. Norplant and Depo-Provera function as short-term or temporary sterilizations, and their potential for abuse was quickly realized. Prior to its approval for use as a contraceptive (in addition to its use as cancer therapy), Depo-Provera had been regularly administered as birth control to women in developing countries, and to black and Native American women in clinical trials.
In 1982, the National Women’s Health Network and its new program, the Black Women’s Health Project, announced a class action suit against the Upjohn Pharmaceutical Company. The media focused on the use of the drug at Grady Hospital in Atlanta, where women were not fully informed of the adverse effects of the drug. While the use of Depo-Provera caused many problems, the suit was dropped because the drug did not cause any deaths.
NBWHP and other advocacy groups still oppose the use of Depo-Provera due to the possible increased risk of breast cancer in women under age thirty-five. This may be especially dangerous for black women, who are more likely to develop this cancer at younger ages. Weight gain of up to twenty to seventy pounds is not unusual, and this poses a threat to the health of many black women—50 percent of whom are already overweight and may suffer from diabetes or hypertension. Loss of bone density is another serious risk, especially to adolescent girls whose bones are still growing, and to women who may be susceptible to osteoporosis. Depression is a side effect with a greater negative impact on the health of poor and black women, many of whom have high levels of psychological stress in their daily lives due to racism, sexism, and economic struggles.
NBWHP also opposes any “incentives” for poor women and women of color to use Norplant or any other long-acting contraceptive, as well as any efforts to restrict choice among forms of contraception. In 1990, Norplant was on the market for just one month when judges began to order it inserted in women. An editorial in a major newspaper suggested that welfare recipients should be given financial incentives to take the drug and reduce their childbearing. Black activists were outraged that legislators would propose laws that would effectively sterilize women for years, simply because they were poor. Furthermore, there was mounting evidence that women having trouble with the drug’s side effects were having difficulty obtaining necessary medical assistance to remove the capsules from their arms.
NBWHP supports efforts to develop female-controlled barrier methods of prevention, such as an inexpensive microbicide or virucide. Microbicides and virucides are chemical compounds that women could put in their vaginas before intercourse to block HIV. A women could protect herself against STDs and HIV/AIDS without having to negotiate condom use with her partner. Ideally, microbicides would be made with and without spermicides so that women who want to get pregnant could do so without worrying about contracting a disease.
Scientists are also pursuing several other options, including hormone-releasing vaginal rings that would be placed in the vagina for several weeks or months, skin patches, and vaccines/anti-fertility drugs that generate a temporary immune system reaction against eggs or sperm. Researchers are examining two options for a “male contraceptive,” an implant and a vaccine.
The single most urgent concern of all health advocates regarding vaccines is how to prevent their abuse, on both individual and mass scales. An agent that could be secretly combined with other vaccinations or injections, or added to food and water supplies, poses a chilling threat to reproductive rights of women around the world. NBWHP urges the public, press, and legislators to demand answers to critical questions surrounding how these drugs will be used in studies and then used with the public.
HISTORICAL EXPERIENCE: STERILIZATION WITHOUT CONSENT
At the turn of the twentieth century, the so-called science of eugenics emerged, teaching that intelligence and other traits were “genetically determined” and if society were to improve, control over reproduction must be exercised. Proponents of eugenics played to white race suicide fears by encouraging “positive eugenics” (more births by white women) and the practice of “negative eugenics” (preventing births by “inferior” people). Compulsory sterilization was advocated by eugenicists to eliminate the “socially inadequate” members of society: the mentally retarded, the mentally ill, epileptics, criminals, prostitutes, and the poor.
Between 1907 and 1913, a dozen states passed involuntary sterilization laws, but constitutional challenges kept them on hold. However, in 1927, the US Supreme Court upheld the sterilization of a “feeble-minded” white girl in Virginia, and the floodgates opened. In short order, thirty states enacted compulsory sterilization laws. State governments initially focused on sterilizing institutionalized young women who were deemed unfit to be mothers. Women who were deemed promiscuous or who had children out of wedlock were often declared “feeble-minded” and institutionalized simply to be sterilized. The economic crisis in the 1930s prompted sterilization proponents to turn their attention to poor southern blacks. As the Depression deepened, whites were concerned that a larger number of black children would require more public funding.
When Nazi atrocities and their systematic destruction of “undesirable” people came to light in the 1940s, eugenics was discredited as a science, and mandatory sterilization laws were repealed. But the “population bomb” theory of the 1950s triggered racist fears of black and brown people overwhelming the white world. White fears were particularly sparked by images of a growing “welfare class” in U.S. cities.
By World War II, more sterilizations were being performed on institutionalized blacks than whites. In 1973, a legal case involving two teenaged sisters uncovered the widespread practice of government-funded sterilization of women without their knowledge or consent. The case of the Relf sisters revealed the fact that 100,000 to 150,000 poor women—one-half of them black—were being sterilized each year under the auspices of the US Department of Health, Education, and Welfare.
The scope of the abuse was terrifying. Women of color with no choice among health care providers often had to submit to “voluntary” sterilization to have their babies delivered. Many women were sterilized without their knowledge or permission: they would undergo gynecological procedures only to later discover that they had been sterilized. This was so widespread in the South that these operations came to be known as “Mississippi appendectomies.” Physicians routinely performed more complicated surgical hysterectomies rather than simpler tubal ligations because their reimbursement fee was higher, and teaching hospitals permitted unnecessary hysterectomies as “practice” for their medical residents.
CONTEMPORARY CONTEXT: VOLUNTARY STERILIZATION IS AN OPTION, INVOLUNTARY STERILIZATION REMAINS A PROBLEM
Current research suggests that women, by and large, desire to control their family size. Most low-income black women want and have a small number of children, and spend most of their reproductive lives trying to avoid pregnancy. Although black women do outweigh their white counterparts in rates of unintended pregnancy, black women with higher educational and income levels have fewer children. Overall birth trends in the United States exemplify this, with family sizes decreasing from an average of six children in the 1960s to approximately three in 1995.
Sterilization as a means of contraception can be the right choice for individuals who are certain that they do not wish to have any (or any more) children. Today, women are usually sterilized by open (mini-laparotomy) tubal ligation or laparoscopic tubal cauterization, or clip placement. These are operations in which the fallopian tubes are cut, blocked, or clipped to prevent the egg from joining the sperm. Men are sterilized by vasectomy, an operation in which the vas deferens (the tubes that carry sperm) are cut or blocked.
For women over the age of thirty, voluntary sterilization via tubal ligation is more commonly used than any other method of birth control. There is usually a high one-time cost for tubal ligation or vasectomy, and these operations are considered permanent, although reversal is sometimes possible. When one partner is sterilized, there is a rate of 99 percent effectiveness in preventing pregnancy. However, sterilization does not protect against STDs and HIV/AIDS.
Involuntary sterilization, primarily via hysterectomy to treat gynecological problems, remains a problem today. Hysterectomy—the removal of the uterus—is the second most frequently performed major surgical procedure among reproductive-age women. More than one-fourth of women in the United States will undergo a hysterectomy before their sixtieth birthday. The Centers for Disease Control and Prevention (CDC) report that the number of hysterectomies has stabilized at 600,000 per year with no difference in the rate of hysterectomies based on race.
Although most hysterectomies involve the removal of only the uterus and the cervix, there has been an increase in hysterectomies in which the ovaries are also removed. Surgical removal of the ovaries can result in a need for hormonal treatment for some women.
The most frequent reason for black women having hysterectomies is fibroid tumors, a condition that disproportionately affects African-American women. However, treatments that provide alternatives to hysterectomies have always been available to certain women. These include laser and other ablative therapies, surgical excision (myomectomy), and medications that, at least, temporarily shrink fibroid tumors.
NBWHP POLICY STATEMENT: BALANCE ISSUES OF ACCESS WITH SAFEGUARDS AGAINST ABUSE
The historical use of involuntary sterilization reflects a societal misconception that black women have too many children, and this is the cause of our social problems. This belief disregards issues of equity with respect to education and employment, and essentially overshadows the political, social, and economic issues that impact women’s quality of life. These ideas are actually contrary to the beliefs that women hold about their won reproductive goals.
NBWHP believes that reproductive freedom is a right of all women regardless of race or socioeconomic status. Current data illustrates that when knowledge and access are increased, women can and do make reproductive decisions that will ultimately have a positive impact on their sexual status. NBWHP supports all voluntary and informed decisions about sterilization. Further, these decisions must be made without coercion. The focus of intervention should not be dictated by stereotypes and inaccurate beliefs, but rather an acknowledgment and effort to address the disparities in education, health care, and opportunities facing black women.
Because black women and other women of color were sterilized against their will or without their knowledge through federally supported programs as recently as twenty-five years ago, safeguards have been put in place to prevent such abuse. NBWHP believes it is possible to balance safeguards against sterilization abuse with a woman’s right to choose sterilization without undue bureaucratic red tape or delays.
Involuntary sterilization presents another set of issues. NBWHP believes that hysterectomy should not be considered as the first and only option for the treatment of fibroids. Only after alternatives have been explored—and it has been determined that this procedure is medically warranted—should a hysterectomy be considered. Black women must be presented with options and opportunities to make educated choices about this and all procedures affecting their reproductive abilities. Through appropriate education and exploration of options, a woman can decide, in conjunction with her physician, which choice is best for her. Always seek a second opinion when a hysterectomy is recommended.
NBWHP also advocates for the continued research on alternatives to hysterectomies in the treatment of gynecological problems. Because there is no universally adopted medical standard for hysterectomy, a vast opportunity is created for non-medical factors such as race, age, religion, and socioeconomic status to become part of the decision-making process. Further research into the appropriateness and impact of this and other treatments as they relate to black women is needed.
Black women must also become savvy self-advocates when exploring options of care. We need to exercise our patient rights and feel empowered to question and/or challenge the medical community in order to make decisions that are right for us.
HISTORICAL EXPERIENCE: A LONGSTANDING PRACTICE
There is evidence that some black women refused to bear children as slaves—and therefore used contraceptives and abortion, in addition to outright refusing to be mated or raped. It is impossible to determine what percentage of the recorded instances of miscarriage and stillbirth among slave women were self-induced or the result of harsh living conditions and forced labor. The same is true with recorded cases of infanticide.
When “modern” contraceptives first became available at the turn of the century, African-American women were quick to understand the clear need to have access to contraception: Illegal abortion was a major method of controlling fertility for African-American women desperate to limit their childbearing. The high rates of illegal abortion translated into tragically high rates of septic abortion and death.
In the 1950s, the medical establishment began to crack down on illegal abortion providers. African-American women who were underground providers were targeted more often than their white counterparts. As access to these generally safe but illegal providers decreased, more and more black women suffered the deadly consequences of self-induced abortion.
An “underground railroad” offered women access to illegal abortion providers throughout the 1960s. Groups of women learned how to perform abortions and then offered their services at low cost to poor women of color. Black women played important roles in these efforts across the country.
The 1973 Supreme Court decision to legalize abortion was critically important for all women and widely welcomed by the many black women who had struggled for this basic right. In 1976, Congress passed the Hyde Amendment which eliminated Medicaid funding of abortions for poor women, the majority of whom are African American. Many black activists were troubled by the failure of the predominantly white, middle-class abortion rights movement to fight harder to prevent passage of the Hyde Amendment.
CONTEMPORARY CONTEXT: ABORTION RIGHTS THREATENED
Abortion is a highly politicized medical procedure in the United States. In 1998, more restrictions on abortions exist than at any time in the past twenty-five years. Legislation ranging from parental consent/notification and waiting periods to “informed consent” and “gag rules” has virtually succeeded in limiting poor women and adolescents to either have a child or submit to temporary and/or permanent sterilization. The requirement in some states that a teenager obtain the consent and/or notify both parents is a serious impediment to many more African-American teens whose fathers are not available or whose pregnancy is a result of incest.
There is well-organized opposition to women making their own choices about abortion. Opponents’ tactics range from fake abortion clinics to “sidewalk counseling” and spreading false information—such as a link between breast cancer and abortion, a claim that has been scientifically debunked. Fanatics have killed health care providers at clinics; even their homes are no longer safe! Many of the targeted clinics are private, nonprofit clinics that provide low-cost services to black women and adolescents; this threatens young women’s access to health care as well as places their lives in jeopardy.
According to estimates based on the National Survey of Family Growth, contraceptive failure is responsible for about half of the 3.5 million unintended pregnancies—approximately 1.7 million. Many women become pregnant even while using contraception because no method is 100 percent effective. Additionally, some women have limited power in negotiations with their partners about whether and when to have children or about the use of a specific contraceptive method.
When faced with an unintended pregnancy, the ratio of black women who choose abortion is about equal to that of white women. However, black women experience unintended pregnancies 2.5 times more often than white women, so we are twice as likely to have abortions.
Having an abortion is oftentimes a painful choice for women, but it may be the right choice at the particular time. Many women struggle with the decision to have an abortion and see it only as a last resort. Too often, they delay their decisions and thus require abortions later in their pregnancies.
Currently, there are two forms of abortion: surgical and medical.
The majority of surgical abortions are performed in the first trimester (three months of pregnancy). Early surgical abortion is a low-risk and relatively simple procedure. Surgical abortions in the second trimester are more complex and require two days.
Late-term abortions (twenty-four to twenty-six weeks) are complicated surgical procedures usually requiring general anesthesia. Most late-term abortions are performed to save the life or health of the mother, but they are subject to intense legal controversy. Opponents of the procedure have been succeeding in their attempts to limit or ban the procedure.
Medical abortion is a two-step procedure in which a woman takes one drug and then returns two days later to take another drug, which brings on uterine contractions. This regimen must be undertaken within the first seven weeks of pregnancy to be effective. Two drugs currently being used for medical abortions are mifepristone (the abortion pill RU-486) and methotrexate.
The advantages of medical abortion include the privacy of taking the drugs in one’s own home and lower risks of infection or damage. Some women have said that they feel “in charge” of the medical abortion process, but women should be forewarned that heavy bleeding and cramping—similar to that experienced with a miscarriage—will occur.
NBWHP POLICY STATEMENT: KEEP ABORTION SAFE AND LEGAL
NBWHP unequivocally supports:
The right of all women—regardless of age, income, or education—to make their own decisions regarding whether, when, and under what conditions she will bear children. We firmly believe that each woman, in consultation with her health care provider, is capable of deciding whether or not to carry a pregnancy to term.
Access to complete information and safe, legal, and accessible abortion services for all women, including young and poor women. We encourage young women to consult with parents or other responsible adults in making this decision.
Mandatory requirements that all medical school curricula include surgical abortion procedure training.
The speedy regulation and release process of drugs for medical abortion, and increased training of health care professionals in their use.
Demand for research to determine what, if any, specific side effects there are for black women undergoing medical abortion.
NBWHP opposes:
Mandatory parental consent or notification laws and regulations.
Restrictive or prohibitive laws or regulations that limit access to abortion services or information, such as the Hyde Amendment and child exclusion policies.
Policies that limit or ban certain medical procedures determined necessary by health professionals. We believe that every woman in consultation with her health care provider can determine which abortion procedure is best for her.
HISTORICAL EXPERIENCE
Historically, tension has existed between the medical community and the African-American community. One hundred years before Nazi atrocities led to the adoption of ethical guidelines for human medical experimentation, black women were used as medical subjects in studies of reproductive health. Surgical techniques in gynecology were developed in the nineteenth century through countless operations performed without anesthesia on black women purchased expressly for these experiments.
Based on these and other violations of trust by the medical community, many African Americans remain apprehensive about professional medical care. This problem is particularly disturbing because black women continue to face conditions that result in poor health and increase the need for competent medical care.
CONTEMPORARY CONTEXT: AFRICAN-AMERICAN WOMEN AT GREATER RISK.
All women face health risks related to their reproductive system, but certain diseases and conditions tend to be either more prevalent or more deadly in the African-American community. These include cancer, fibroids, pelvic inflammatory disease (PID), and infertility.
CANCER is defined by the American Cancer Society as “a group of diseases characterized by uncontrolled growth and spread of abnormal cells.” Advanced cancer, the condition in which the disease has spread throughout the body, usually results in death. Cancers of the reproductive organs are a serious health concern for African-American women.
Breast cancer is the leading cause of cancer deaths among African-American women between the ages of thirty and fifty-four. Compared to white women, African-American women have a lower incidence but higher death rate from breast cancer. Detection at an early stage strongly influences the success of treatment. Some health professionals believe that black women should have a baseline mammogram at age thirty (rather than at age forty) because breast cancer strikes many black women at earlier ages.
Cancer of the uterus, which includes cervical cancer, is the second largest cause of cancer deaths among African-American women ages fifteen to thirty-four. African-American women are 2.5 times more likely to have cervical cancer than white women. Risk factors for cervical cancer include multiple sexual partners, early age at first intercourse, a history of STDs (particularly the human papillomavirus), and oral contraception use.
Little is known about the causes of ovarian cancer. Age is listed as the highest risk factor especially for women over sixty, yet ovarian cancer appears as one of the five leading cancer sites for African-American females ages thirty-five to fifty-four. Furthermore, for women with breast cancer, the chance of developing ovarian cancer doubles. Incidence rates for ovarian cancer are slightly lower for African-American women than for white women, but as with breast cancer, our survival rates are also slightly lower.
If detected early enough, there is an almost 100 percent survival rate for all three of these cancers. However, because a disproportionate number of African-American women live in poverty, have inadequate or no health education, and encounter obstacles to quality health care, most are diagnosed too late to save their lives.
FIBROIDS are benign (noncancerous) tumors that occur in the uterine wall. Fibroids often go undetected because they do not always produce symptoms. More than 50 percent of black women have fibroids, and fibroids are three to five times more prevalent among African-American women than white women. Most fibroids are small and harmless. However, if fibroids grow unchecked, health problems may result, including heavy or prolonged menstrual bleeding, abdominal bloating, lower-back pain, fatigue due to iron deficiency, painful sexual intercourse, difficulty becoming pregnant, and recurrent miscarriage.
There are several treatments for fibroids. Injections of hormone (GnRH) Lupron shrinks fibroids temporarily. Also available in a nasal spray, these medications induce a menopausal state in a woman’s body, causing the ovaries to cease hormone (estrogen/progesterone/testosterone) production. Small fibroids can also be removed surgically by burning away with a laser or by being scraped off. For larger tumors, a small incision is made in the abdomen for removal by laser or other medical instruments. Another procedure involves cutting off the estrogen and blood supply to the fibroid, which causes it to wither and die. Women who choose removal of fibroids must be made aware of a 30 to 50 percent recurrence rate when multiple tumors are present (within five years). Hysterectomy—complete removal of uterus—is still the most common treatment for fibroids, but it is often unnecessary.
INFERTILITY affects African Americans at a rate up to one and a half times higher than for whites. The causes most often cited include untreated sexually transmitted infections (particularly chlamydia and gonorrhea) which cause pelvic inflammatory disease (PID); endometriosis (the growth of intrauterine [endometrial] tissue outside of the uterus); nutritional deficiencies; complications from childbirth and abortion; and environmental and workplace hazards.
NBWHP POLICY STATEMENT: GREATER ACCESS TO HEALTH CARE IS NEEDED
Stronger preventive health care and early detection are important steps to protect our health from cancer. Cancer survival hinges on early detection. The sooner the disease is diagnosed and treatment begun, the higher the chances are that the spread of abnormal cells will be stopped before invading other areas of the body. Therefore, women of color must have access to quality, affordable preventive screening (including regular gynecological checkups, breast exams, Pap smears, and mammograms), education regarding prevention as well as warning signals, and follow-up counseling for all types of cancer. Our efforts at prevention must include knowing the importance of nutrition, exercise, regular stress reduction techniques, and the importance of controlling modifiable habits, such as smoking, alcohol, and/or drug use.
There is evidence that many African-American women do not participate in cancer screening programs because they do not know about them. In one study, nearly 60 percent of women of color stated that their reason for not complying with screening guidelines was a lack of appreciation of the importance of screening. Another reason for the continued higher cancer death rate among African-American women may be a less complete follow-up of positive tests, particularly if they do not have a regular source of care.
NBWHP also supports the development of new tests to detect breast cancer in its early stages. Mammograms are not effective in detecting breast cancer in women under thirty-five years of age because of denser breast tissue. Only 25 percent of early cases are caught by mammograms in this age group. However, mammography remains a very important tool in breast cancer detection, as improved technology is devised.
NBWHP calls for an end to the barriers faced by African Americans seeking treatment for infertility. These barriers include the high cost of infertility treatment; advertising by infertility treatment centers that feature only white infants and fuel the unspoken assumption that white babies are more highly valued by society; and the continued portrayal of black women as overly fertile, which generates a lesser sense of urgency for treatment of our infertility. Attention must be focused on improving the basic conditions that contribute to infertility, and on improving access to preventive health care and prompt diagnosis and treatment of STDs. Taking these steps might reduce the infertility rate and allow black women to achieve greater overall health.
Both private and public health care programs have looked at managed care as a way to improve the quality and control the costs of health care. Although managed-care programs have the potential for providing high-quality health care, they have been largely used as vehicle to control costs among the insured, particularly with federal health programs. Managed care programs have been widely criticized for limiting patient choice of physicians and for lack of quality assurance mechanisms.
NBWHP believes that comprehensive health care reform is crucial to provide all Americans with equal access to quality health care.
HISTORICAL EXPERIENCE: A TABOO TOPIC
Before the turn of the century, any discussion of menopause was considered taboo. In fact, women whose childbearing years were over were widely looked upon as old and sexually unattractive. Menopause itself was viewed as an unpleasant condition to be dreaded and feared, much like a disease.
These attitudes can be attributed, in part, to the fact that until the early 1900s, most women did not live to see menopause. Due to disease, physical labor, and complications related to childbirth, the average life span for a woman was about forty-five years. Those who lived into their fifties were considered elderly.
Fortunately, things are changing. Approximately 40 million female “baby boomers” will reach menopause around the decade of the 1990s. As a result of this demographic trend as well as dramatically increasing life expectancies, menopause has become much more of a topic for study and discussion.
CURRENT CONTEXT: THE MEDICALIZATION OF MENOPAUSE
Menopause is the process in which ovarian hormone levels diminish, signaling the end of a woman’s reproductive years and cessation of menstrual periods (or flow). Menopause has three phases: premenopause (active menstruation), perimenopause (noticeable changes), and post-menopause (after periods have ended). A woman will know she has reached menopause when she has completed one year without menstruation. A health care provider can confirm this by measuring hormone levels.
Perimenopause is the two- to ten-year period before the end of menstrual periods, occurring between the ages of about thirty-five to forty-eight. During this phase, the length, amount, and frequency of menstrual flow may change. Pregnancy and the spread of sexually transmitted diseases can still occur at this time, so precautions must be taken.
Many women pass through menopause with few discomforting signs. Other women who experience a sharp decline in hormone levels may suffer more discomfort. The most common discomforts associated with menopause are hot flashes, insomnia, mood swings, vaginal dryness leading to painful intercourse, weight gain, forgetfulness, waning libido, and irregular vaginal bleeding.
Heavy periods are common during this time, but often subside as estrogen levels drop. Prolonged menstrual bleeding, especially after periods have begun to diminish, may be a sign of abnormal growths in the uterus or an overgrowth of the uterine lining. These problems may lead to cancer. Thus, regular gynecological checkups are important for early detection and obtaining treatment as early as possible.
There are few scientific data regarding how menopause affects African-American women differently than other women. However, anecdotal information indicates that black women may view this change of life more positively than white women. Many African-American women see menopause as a natural part of life and look forward to the end of their childbearing years. Those who suffer discomforts may turn to home remedies, natural herbs, vitamins, and spirituality rather than, or in addition to, Western medicine for relief.
As a result of widespread media campaigns by pharmaceutical companies that urge women to combat the signs of menopause and aging, many midlife women utilize hormone replacement therapy (HRT). Premarin (a brand of estrogen) has become one of the largest-selling prescription drugs in the United States. However, this drug is primarily used by middle-class women, while poorer women—including those who need the drug after a hysterectomy—are unable to obtain it.
Any decision about using HRT should be made individually, based on complete and accurate information regarding the risks and benefits. HRT is generally inadvisable for women who have had a stroke or heart attack; have had breast or uterine cancer; suffer from impairment of liver function; have unexplained vaginal bleeding; are pregnant; or face a variety of other health conditions. HRT is known to increase the risk of breast cancer after long-term use; increase the risk of endometrial cancer (if estrogen is used alone); and cause (in some women) nausea, weight gain, breast tenderness, uterine bleeding, fluid retention, and/or depression. However, estrogen may reduce the risk of heart disease and osteoporosis.
NBWHP POLICY STATEMENT: MENOPAUSE SHOULD BE TREATED AS A NATURAL CONDITION
NBWHP opposes the medicalization of menopause. It is not a disease, but a natural stage in a woman’s life. Because pharmaceutical companies have promoted the medical treatment of “estrogen deficiency disease,” many women have been cut off from seeking the advice and wisdom of elder women who have dealt already with this life transition. Furthermore, the ad campaign has contributed to the problem of some in the medical community mistakenly attributing health concerns reported by midlife women to menopause when the actual cause may be serious conditions such as gallbladder disease, hypertension, or clinical depression.
NBWHP supports the management of any uncomfortable signs of menopause with natural, self-help methods, including a diet rich in fresh fruits and vegetables, soy products, plenty of exercise, and stress-reduction activities. However, when signs are severe or women desire a medical approach, access to appropriate medical treatment of menopause must be available. Furthermore, all African-American women approaching menopause must have access to annual medical exams that include a mammogram, Pap smear, and bone density test.
NBWHP is firmly committed to the conviction that self-help—on both personal and community levels—is the foundation on which African-American women will shape the future for themselves and their families.
Black women simultaneously face racism, sexism, classism, and heterosexism. This umbrella of oppression affects us in all areas of our lives, even when we believe ourselves to be surviving and thriving. By better understanding the ways in which these interlocking oppressions affect our health status, we can examine our wellness within the broader social/political/economic context that is our reality. In this way, efforts to promote our health are clearly political in nature as we take control of our lives and support each other to do the same.
Through self-help, many of us have been able to achieve personal empowerment and make changes in our lives to make ourselves healthier. However, those of us who promote self-help and practice it daily recognize that such activities alone cannot secure democratic rights and freedom. No one can “self-help” her way to employment, housing, education, or health care when basic access is blocked by the discriminatory practices of employers, lenders, service providers, and governments.
We must make the connection between personal empowerment and community empowerment in order to advocate collectively for the public policy changes necessary to improve the quality of life for black women, our children, families, and community.
THE PROCESS OF SELF-HELP
Self-help begins when we are willing to confront our reluctance to discuss our sexual and reproductive health issues, and when we commit to breaking the “conspiracy of silence” and to taking good care of ourselves.
Self-help continues when we remember that a woman’s sexual and reproductive health cannot be separated from the political, social, and economic context in which she lives.
Self-help is strengthened when we understand that true choice is possible only when women have adequate nutrition, health care, education, employment, and housing—and enjoy full and equal access to economic and political power.
Self-help grows when we challenge discrimination in the form of racism, sexism, or heterosexism—all of which kill African-American women—and when we are willing to face our own classism that divides African-American women into “haves” and “have-nots.”
Self-help is rooted in our awareness that if the rights of one women are limited, then the rights of all women are threatened—and a commitment to positive action to ensure that women achieve genuine reproductive health and rights.
SELF-HELP: PERSONAL EMPOWERMENT
The effects of racism and internalized oppression—combined with the effects of poverty and violence—cause much of the stress in our lives and contribute to our poor physical, emotional, and economic health. NBWHP urges you to adopt the following self-help activities that lead to good health and personal empowerment.
Take positive steps toward your own good health. Seek appropriate, competent, thorough medical care on a regular basis. Learn about self-examination and become familiar and comfortable with your own body.
Discover what works to lift your spirits and cheer your mind—music, meditation, talking with friends, bubble baths, reading, yoga, laughing with children—and then nourish yourself everyday in at least one special way.
Share information. Ask the women in your life—mother, aunts, grandmothers, sisters, cousins, close family friends—to talk about their sexual and reproductive health experiences. Uncover secrets. Get to know your personal history.
Learn about principles of sexual responsibility. Apply them to your own life, and help friends and family to do the same. Have the courage to ask for and receive accurate information about sex and sexuality.
Protect yourself and others from sexual abuse or exploitation. Value your ability to control your decision making around sex. Create respectful, mutually satisfying relationships that may or may not include sex.
Commit to achieving a healthy weight, to selecting and eating more nutritious foods, and to engaging in regular exercise such as Walking for Wellness, the fitness component of NBWHP’s self-help groups that involves sisters walking individually and in groups.
If you choose to drink alcohol, do so in moderation. Avoid illegal drugs and do not abuse over-the-counter or prescription medications.
Do your homework on the women’s issues in your community. Decide to become personally involved in community groups or volunteer organizations.
Exercise your rights! Register to vote, and be sure to vote in all elections.
SELF-HELP: COMMUNITY EMPOWERMENT
Once you have started to empower yourself, you can help others to do the same. Whether your community is a small town, an inner-city housing project, or a college campus, there are many opportunities to help African-American women achieve better health for themselves and their families. Wherever people are, you can get involved:
Join the local chapter of NBWHP. If there isn’t one, start one!
Encourage all women in your life to schedule medical checkups and any necessary screenings. Offer to accompany them and hold their hands for mammograms or medical appointments. Make this part of birthday gifts: after the appointments, take them to lunch!
Volunteer in reproductive health clinics that serve women of color.
Volunteer in schools. Get involved in the PTA, and work for effective sex education for students from the elementary grades through high school.
Volunteer with church groups that are serving the homeless and hungry.
Sponsor walkathons or other health-promoting events for black women.
Support nonprofit advocacy organizations working on reproductive health and rights issues with either your money, your time, or both.
Join local civic or social organizations and put reproductive health and rights on their agenda. Volunteer to get speakers.
Encourage your family and friends to register and vote. Help get people to the polls on election day.
Write or call elected officials to express your views on political issues affecting the lives and health of African-American women.
Become familiar and involved with local and state politics on reproductive health and rights issues. Organize voter registration drives, circulate, petitions, sponsor educational forums, and promote reproductive health care services.
Let us know what community self-help actions you are undertaking. And remember, NBWHP is available to help with information and assistance.
Congresswoman Patsy Mink (D-HI) served in the House of Representatives from 1990 until her death in 2002. This interview was conducted in June 1999.
TK: What would you say are some of the most prominent health issues facing Asian women?
PM: The statistics with reference to Asian health are shocking and startling in terms of lack of access to typical health facilities. We have to do a lot more to get our health care system to be more aware of the difficulties of getting health information to Asian women. They’re not going for mammograms in many cases until they’re very, very terminally ill. They’re not accustomed to the typical invasive methodologies of the regular health care system and, as a consequence, they withdraw from it. The system doesn’t allow things that are culturally comfortable for the Asian population, for example, acupuncture and herbal medicines are not covered services. The two systems do not come together, but diverge, and the quality of life for Asian communities is therefore greatly diminished. President Clinton recently established the President’s Advisory Commission on Asian American Health and other concerns. The National Institutes of Health is supposed to make studies and recommendations and to see how these discrepancies can be resolved. The President and the departments of government recognize that the quality of life for Asian Americans is being severely impacted by the failure of the regular health care system.
Breast cancer rates increase dramatically for Japanese women when they move to the United States. This can be attributed to diet or other circumstances of their changed life, but those statistics are really quite alarming. There is a large incidence of cancer and heart disease among all Asian population categories—male and female—as they move to the United States and become second- and third-generation Americans.
TK: What would you like to see changed or developed in health care for Asian women?
PM: Asian women are not very receptive to the calls that traditionally are made to the rest of the population to have annual mammograms, and Pap tests, and so forth. One study showed that only 18 percent of Vietnamese women have ever had a Pap smear. A random sample of 157 Chinese-American women in California showed that 68 percent did not know what a Pap smear was; they had never heard of it! Hepatitis B is thirteen times more common in the Asian population than in other American populations. Native Hawaiian women have the highest incidence of breast cancer of all minority women. This is the population group within our country that is suffering and we need to pay attention. We need to find out what it is that we aren’t doing right.
TK: Why do you think this situation exists?
PM: If I knew, I would already have begun to implement the solution. We’re trying to figure out what we can do to reach out to this population and get them health care services—whether it’s the regular variety or alternative medicine—whatever can bring them up to normal health levels.
TK: In The Conversation Begins, you say that the women’s movement still focuses on middle-class white women. What do you think can be done to change that?
PM: Very little. I don’t think that there are enough minority Asian women who participate, who think it’s worthwhile to express themselves on behalf of the minority population. As a result, years go by with people paying no attention to anything other than what the middle-class white population is concerned about. There is even less attention to minority women’s issues now than there was ten or twenty years ago.
I think it’s mainly that there’s no exposure, there’s no sensitivity training, there’s no one there to keep poking at the white majority when they make a mistake, or forget a certain population, or gear their message to white populations while leaving out the minorities. The absence of even black women in these groups is quite astounding, so I don’t know how we can get Asian women to participate. It’s very tough. When we all started the efforts to organize the National Organization for Women and the Women’s Caucus, I tried very hard to bring in Asian communities, but they wouldn’t participate. Even in my state of Hawaii, neither organization is in existence. I can’t even say that in my own circumstances I’ve been able to create an awareness of the importance of political participation.
TK: Because of the absence of black women in health organizations, Byllye Avery founded the National Black Women’s Health Project. Are there corresponding Asian groups?
PM: We have a lot of Asian health groups. But that doesn’t make up for the absence of attention or insensitivity toward our concerns from groups like NOW and the Women’s Caucus. They will acknowledge each other as groups, but that’s very different from having the population sitting right there in your executive committee and at your conventions, pounding away about exclusions.
TK: What should be done to increase participation?
PM: I don’t know how you can get populations to want to participate. Even in our own exclusively Asian groups, there are not large numbers participating. A few people in leadership positions have to speak for the many that are silent.
TK: Would you call yourself one of those people?
PM: Yes.
TK: Would you call yourself an activist?
PM: Of course, always.
TK: And how did you get involved in activism?
PM: I think it’s just in my nature to run into a problem and to fix it rather than to simply say, “Well, that’s a problem; that’s the way things are and always will be.” I have a personality that says, “Let’s go see if we can fix it.”
TK: So that’s what activism is?
PM: Yes; that’s all it is. It is to believe that things can be better, that you don’t have to accept the status quo.
TK: How did you decide to become a lawyer?
PM: Well, that was quite accidental. Actually, I was trying to become a medical doctor, but I couldn’t get into medical school because women were excluded. I wrote to a dozen or more medical schools and each wrote back saying, “I’m sorry, but we don’t take women.” So I was very disenchanted. I got my bachelor’s degree and I started working as a clerk out in the private, nonprofit sector. One of the women I ran into who was the director of a program said, “Well, why don’t you try for just any professional school; it doesn’t have to be medicine; if you have the talent, you can direct your professional education into doing other things.” She persuaded me to write an application to law school. By some great magic, I got into law school the first time I tried without knowing what the study of law really was. I went as an experiment, and I found it fascinating, very engrossing. So I stuck with it for three years, got my law degree, came home, and really felt better equipped to challenge the status quo because I had that fantastic educational background.
TK: What do you feel is lacking in the political sector; what needs more focus regarding women?
PM: More women need to be part of the process. I think we could make much greater headway if more women were active instead of just sort of background participants—making coffee, serving whatever, not engaging in the stream of political ideas and immediate change. We need women to get to the forefront and become part of policy making.
TK: How can that happen?
PM: One by one. One by one.
TK: What issues would you like to work on in the future?
PM: We are working very hard on education right now. We want to find ways to improve education because that is the source of the strength of our country and our ability to keep up with global scientific and technological advances. If our educational prowess falls, we’re going to diminish our ability to be competitive; so I think that education is terribly important. While it is important for the individual, it is even more important for the nation as a whole; so that’s my number one issue. My number two issue is all the health issues: the ability to maintain Medicare, for instance, to provide enough for families to take care of the medical needs of their elderly and sick. And finally, I am concerned about Social Security and the needs of the Asian population. I would say that those three are at the top of my list.
Charon Asetoyer is the founder of the Native American Women’s Health Education Resource Center. This interview was conducted in June 1999.
TK: What do you think are some of the most prominent reproductive health issues for indigenous women?
CA: The lack of delivery services within communities—women have to travel long distances to deliver their babies and get prenatal care. And reproductive tract infections are at an all-time high. The Indian Health Service doesn’t offer education in prevention and that causes these problems. Too many non-barrier contraceptives are promoted.
We have people who are working on issues of boarding school survivors, people who were going to boarding schools where there was sexual abuse committed against our children by the Catholic Church. People are just now starting to talk about it. This information is surfacing, and it has had a devastating effect on our reproductive health and will continue to do so until these issues are addressed.
The social problems in our community create situations in which our young women feel that starting their families at an early age is the right thing. In reality, a fourteen-year-old should still be in school, should be looking at how she can have fun and be a fourteen-year-old and not at how to be a mother. We need to look at why this is happening to our young people, why they feel that their options are so limited that they start a family. We need to look at what can go on within our communities that will support our young people in staying in school. They need to realize that they have a future and choices. There are very few services that look at improving the status of our young women and that would have a very profound, integrating effect on our reproductive health and rights.
Development, any kind of development, affects the status of health and our families. We need to look at why we haven’t made the same forward moves in community development as other people. When you start uncovering all of these issues, you are going to come up with the same answer. We’re talking about 500 years of contact—we call it “AC” instead of “AD”—500 years after contact, that’s how we look at things, 500 years after Columbus. For us, that has had a very profound impact on our current existence and people seem to forget that. People whose culture is completely devoid of origins want us to assimilate into the mainstream. They do not respect cultural differences. There are light-years of difference between that and a people who still feels proud of its culture. I think it is very important that people stop to think, that people respect differences, even if they have lost their knowledge of their traditional ways because they are no longer in their homeland, no longer in Europe. They are here in this country where we lived and flourished long before they came. They need to stop trying to take away very important fundamental human rights that make cultures cultures, and to acknowledge our autonomy, our sovereignty. When that happens, then you will see an increase in the status of health of indigenous patients. We’re just so busy trying to fight off corporate America and trying to maintain who we are and to fight the assimilation and fight the mainstreaming. It’s very difficult to have time in your day to pay attention to your health like other people do. We don’t have the same access as other people and it is fundamentally important to recognize that.
TK: Can you tell me some specific pros and cons of the Indian Health Service?
CA: The Indian Health Service is our primary health care provider, and we have to do everything we can to make it a good provider, to improve its services. The Indian Health Service needs to look at community response in order to improve its services. It needs to make more information about sexually transmitted diseases and reproductive tract infections accessible and available to the community. It needs to improve on its preventive services; it needs to establish better informed consent. The Indian Health Service headquarters has established informed consent, but it’s amazing that it is not uniformly mandated. This means that every Indian Health Service clinic does not have to use the same informed consent procedures. In some instances, when you walk in the door, that’s considered consent; that’s not acceptable. So they have to have more continuity and consistency within their services. They also need to have more culturally sensitive practitioners who are aware of our traditional practices. They need to respect them so that both approaches can work together. There may be patients who are using both—the biomedical approach as well as the traditional, spiritual approaches—for treating their problems. So the physicians need to realize that they are on a reservation, that they are functioning within a different culture, and that it is unacceptable to force a person into complying with all of their procedures. Practitioners need to become more familiar with indigenous practices and, through that, will achieve much better outcomes.
TK: Do issues of self-worth play a role in the difficulties indigenous women have in seeking health care?
CA: I don’t think that we don’t feel worthy enough to seek health care. The problem is more one of fear. Because of our history, we’re dealing with fear of the Western health care provider. There is not a lot of trust within the community for the Indian Health Service. Too many of our women have been sterilized, too many of our babies have died, our midwifery practices have almost been lost because of our being forced to use IHS services, so there is a mistrust of the services the government provides. A lot of people don’t want to go to IHS clinics, and will turn to our traditional spirituality and medical practices, or to what remains of them after they were outlawed. For us, it has to do with trust, or lack of it.
TK: What kind of involvement does the Native American Women’s Health Education Resource Center have with other women’s groups and minority groups?
CA: We try very hard to do as much networking as we can, to network with other indigenous organizations, to network and work with other women of color, and to also work with mainstream women’s organizations because, when it comes right down to it, we have to if we’re all to survive. Many of us are victims of the same perpetrator: pharmaceutical companies and capitalism—multinational corporations trying to turn a buck on our gender. So it’s very important that we work together and respect each others’ philosophies, communities, and cultures. Together we can make changes; fragmented and working against each other, we can’t.
TK: What changes would you like most to see in the next few years?
CA: I would like to see more indigenous women and more women of color sitting on boards of mainstream organizations. I would like to see more foundations and philanthropic efforts directed at women of color and indigenous women so that we can address the kinds of issues in our communities that need to be addressed. We need to develop programs that assist our young women in being able to have better reproductive health and that provide services to improve the status of young women. I’m sure that would create a turnaround in childbearing. I’d like to see healthier women; I’d like to see a reduction in diabetes within our community. I’d like to see respect for indigenous women from the biomedical community; and I would like to see the government back off from so much control and acknowledge the policies that we would like to see implemented in our health care system.
TK: Can you tell me a little bit about your experiences in the National Women’s Health Network [NWHN]?
CA: I still feel that the National Women’s Health Network is a very important organization and that it’s a voice in Washington for all women. They have been incredible advocates, and have impacted policy in Washington for women’s reproductive health. I think that the organization needs to continue its existence. I served on the board of directors of the National Women’s Health Network for eight years, and I support the organization wholeheartedly. In fact, the NWHN, and the National Latina Health Project and the National Black Women’s Health Project, helped us to develop the Native American Women’s Health Education and Resource Center fourteen years ago. So I have very high respect for the National Women’s Health Network.
TK: Let’s say an indigenous woman wanted to turn to someone or someplace for superior care, better care than what is normally available to them, where would you send them?
CA: Well, I would send them to a woman’s clinic in Sioux Falls. That is 150 miles away from us. We are in the Yankton Sioux Reservation in Lake Andes, South Dakota. If a woman does not have an automobile, or does not have money to buy gas or hire someone to take her 300 miles round trip, she’s out of luck. Most indigenous women on reservations in this country live in very rural, isolated communities. We not only lack access to services within our own community, but we also lack resources that could provide us with other kinds of services.
TK: I know you did some reports on Norplant. Why did you do them and what did you discover?
CA: We did reports on the impact of Depo-Provera and the impact of Norplant in the Native American communities because they seemed to be the Indian Health Service’s contraceptives of choice as opposed to the contraceptives of choice of the women in the community. Women were not getting all of the information about these contraceptives, or about the impact they would have on their health, both in the long- and short-term. On the surface, Depo or Norplant look like the best things since sliced bread; but that couldn’t be more wrong. So it was important that we examine the situation and publish documented reports that would bring all of these issues to the fore. We found that in the case of Norplant, when women realized, “This isn’t the right kind of contraceptive for me because I’m having some kind of side effect; I want to have it removed,” their request was being denied. Women were being forced to lose their reproductive health, and their reproductive rights were being violated. Women no longer had choice or control. They were at the mercy of the health care provider. In terms of Depo-Provera, it was and still is the form of contraception women are being encouraged to use. After they use it for a while and realize the side effects related to the drug, it’s too late to do something about it. Again, it’s a provider-controlled contraceptive.
TK: What can indigenous women do to overcome and change all the obstacles they face?
CA: It’s not a matter of overcoming these kinds of reproductive health problems; it is one, rather, of being able to organize ourselves in order to move policies forward to prevent these kinds of things from continuing to happen. We have been organizing women for over ten years now. We have seen some changes, positive changes, because of the work that we’re doing, both at local and national levels in the form of policy changes and service improvements. I really think that a lot of that is because women are organizing and getting more involved and bringing our day-to-day reality into the policy arena. It’s important for indigenous women, for all women for that matter, to continue to organize and work on issues of reproductive health.