Reconstruction 10.3 (2010)

Introduction

<1> The strategies and organization of activist groups have changed a great deal over the past century. In the nineteenth and early twentieth centuries, the model of activism was the labor union. Unions varied a great deal in size and strength, but they tended to be ideologically unified groups that relied primarily on strikes and protests to pressure the government and their employers for reform. Groups ranging from Marxists and anarchists to moderate liberals organized and acted in much the same manner, making the forms of peaceful activism nearly universal. Close-knit groups composed of permanent or semi-permanent members are now comparatively rare, and while many of the traditional tactics are still used with great success, new forms of activism have emerged. Contemporary activism owes much to earlier forms of resistance both because it takes the tactics of the past and reuses them in new contexts and because new forms of activism are only possible because of past victories, in which basic civil liberties and the right to participate in government were secured. Many of the central tools of contentious politics are the same now as they were a century ago: protest marches, strikes, disrupting normal routines, petitions, and electoral organizing. In the past, these proved methods successful in mobilizing disenfranchised people in the workplace and government. These continue to be central tactics for activists, but activism has changed a great deal ideologically and methodologically.

<2> This essay looks at disease activism of the past three decades to illustrate some of the ways that both membership and action have changed. The primary focus is on ACT UP and its efforts to spread AIDS awareness and on the breast cancer movement. These two instances of healthcare advocacy pioneered many of the new forms of activism, set the tone for future disease-related organizing, and serve as a model that other kinds of organizations can follow. Heart disease activism is also discussed to show the dramatic difference between grassroots movements based on a common identity and one that is primarily run by government agencies. It also serves as a promising example of how action can be construed in personal terms that emphasize individual incentives. There is much to learn from disease activism, as groups fighting for awareness and funding have often taken obscure, misunderstood causes and made them into major public concerns. These lessons include the importance of framing new problems in terms of existing identities, the effective use of symbols, cooperation between groups with divergent objectives, and ways of transforming lifestyle decisions into acts of resistance. Each of these movements is approached from an American perspective, but the tactics they develop have far-reaching implications and can be seen as potential models for organizing in any liberal society.

<3> Disease activism shows the transition from traditional acting with its focus on large protests and strikes to more isolated and temporary action focusing on individual actions like lifestyle change or participation without membership. As popular association continues to suffer, it is essential that activists find new and compelling ways of getting people involved. Not all of the new forms of engagement are positive; some, especially the marketing approach, risk alienating some supporters and compromising their message. Nevertheless, all of these approaches are worth consideration and even those that have a moderating influence may be necessary for the sake of building a broad base of support.

Fighting for AIDS Awareness

<4> The AIDS movement is among the best examples of early disease activism because it started in a weak position and rose to become one of the most prominent social movements in recent history. Of the three areas of disease advocacy considered here, AIDS activism is the closest to the traditional action of the labor movement. Their contribution was in making nonviolent protests more radical by infusing them with theatrical elements that simultaneously humanized the disease and shocked audiences. Their innovations were driven by necessity, as those suffering from AIDS were part of a marginalized community that others simply did not want to listen to. The disease’s victims were easy to ignore and poorly understood. Worse still, it was common to blame those with the disease and claim that they deserved their fate. Activists were not only ignored, but often openly despised. From this position of adversity there was little that could be done except to take aggressive action to show those outside the effected risk groups the deadly consequences of negligence. In doing this, groups like ACT UP became models for subsequent disease activists. They provided a model of organizing and protesting that successors expanded on and transformed into the contemporary form of limited activism.

<5> Among the most famous and influential AIDS groups is ACT UP, the AIDS Coalition to Unleash Power. It was founded in New York in 1987, at a time when little was known about AIDS, by around 300 people who were displeased by the ineffectiveness of existing groups. In 1988 the New York City chapter had over 150 regular members, and new chapters were being formed across the country (Epstein; 220). It was mainly, though not exclusively, male and many of the members were well-educated. They were also democratic, having no formal leadership (Stockdill). Unlike the looser organizations that typified disease activism in the 1990s, members of ACT UP were deeply engaged. They contributed regularly to the group’s actions without needing compulsion or special incentives to take part in protests in which they risked being arrested. Their version of direct action was novel because it did not simply consist in holding up signs or chanting slogans. They created far more graphic methods. They freely borrowed strategies from other movements, “adopting styles of political and cultural practice deriving from sources as diverse as anarchism, the peace movement, the punk subculture, the feminist health movement, and gay liberation” (Epstein; 219-220).

<6> The group held many important protests that succeeded in getting them and their cause national attention. On March 24, 1987 and 1988, and again on September 14, 1989, hundreds went to the New York Stock Exchange to demand better access to prescription drugs and experimental treatments. Each time, members were arrested and discouraged from returning, but their persistence paid off. They were granted a number of concessions. For example, in 1989 the high cost of the drug AZT was specifically targeted and within days the price was significantly reduced (Shaw). The group was widely covered in the media because of the activists’ media awareness. Protests were often held at places like the New York Stock Exchange, the main post office on tax day, and St. Patrick’s Cathedral during mass, where there were sure to be cameras covering other stories.

<7> The most famous of ACT UP’s tactics were the die-ins. On October 11, 1988 over 1,000 members went to the FDA headquarters in Maryland to lie in the streets around the building holding paper tombstones, which blamed the FDA’s inattention for their deaths (Epstein; 219). To further emphasize the point, chalk outlines were traced for those who had already died. This was an effective way of gaining attention, made still more powerful by the massive police response that drew attention to the protest. As Epstein puts it, “Though the New Yorkers were particularly well connected to the art world and the communications media, ACT UP in general quickly perfected a highly dramatalurgical style of activism and an abiding concern with techniques of expression” (Epstein; 220). Their sense for drama perfectly highlighted the consequences of the FDA’s slow response. The die-ins were repeated in other protests too, each time with the same emphasis on the disease’s human cost.

<8> At times the ACT UP protests expanded into other domains when there were connections to the group’s primary interest. On January 23, 1991, several members of ACT UP interrupted Dan Rather’s CBS Evening News broadcast to shout “Fight AIDS, not Arabs” – a reference to the First Gulf War . The slogans the protestors shouted suggests that their opposition to the war was founded primarily on the wasted time and resources that could have been better spent fighting disease. When asked about why they resorted to an “immature and silly” form of resistance the protestors responded by saying “we think spending hundreds of billions of dollars bombing people in another continent is a silly and immature way to get a point across"(Day of Desperation).

<9> One of the greatest strengths and weaknesses of ACT UP, and the AIDS movement in general, was that activists could take advantage of existing social networks. Usually, this is a great predictor of success. Whenever a new movement can rely on existing connections, the job of organizing is made much easier; when there is an identity that already binds the members together, the work of integrating and team building is likewise solved. Since most members of ACT UP were homosexuals – part of a persecuted minority that cultivated close ties to protect itself from abuse – they had a distinct advantage over looser activist networks. However, linking the movement closely to the struggle for gay rights risked alienating many who regarded homosexuality as immoral. It also made finding government funding more difficult, as few politicians were willing to risk their careers championing such a controversial disease.

<10> The New York Times headline reporting the March 24, 1987 protest is telling: “Homosexuals Arrested at AIDS Drug Protest.” The implication is that all the protestors were gay and that the only thing unifying them was their sexual orientation. This identity was not forced upon the group; ACT UP was overtly linked to the gay rights movement and some leading members came from the older group Gay Men’s Health Crisis. Some scholars describe their work in AIDS activism as an extension of their gay liberation work (Stoller; 35). Like those in the civil rights movement and the anti-war movement in the preceding decades, the activists were linked by one common concern rather than by some comprehensive ideology. Just as every African American shared in the experience of discrimination and could participate in opposing it regardless of whatever other differences divided them, the members of ACT UP could work together on the basis of their sexual identities and interest in raising awareness about AIDS even if members disagreed on other matters. They did not have to subscribe to some comprehensive doctrine, only to a few commonalities. This is one of the ways that they embody the new form of activism; they were much less dogmatic than the groups of the old labor movement.

<11> In earlier activist groups deviance from the comprehensive dogma was sanctioned. The narcissism of small differences pervaded, leading to persistent internecine struggles. Even in the communist movement, where members were already at an extreme disadvantage, leaders would routinely foment conflicts that would split the organizations in half. There is, of course, conflict in contemporary social movements, but many of the most successful are those that are able to focus on one particular issue and overcome other conflicting interests. This is not to say that these groups must be moderate. The AIDS activists were certainly not moderate when their protests began; they were fighting against their marginalization using some of the most aggressive nonviolent tactics ever used in the US. Their unity was preserved by their specific focus and by their democratic structure. Rather than expanding the group’s focus to take on new causes, members formed alliances that could extend their influence.

<12> With so many contemporary organizations focusing on a specific interest, small groups often have difficulty making their claims felt. Even relatively large groups may have a narrow influence if they focus exclusively on a particular cause. The tendency of contemporary organizations to specialize makes affinity groups essential to mobilizing large number of likeminded people for matters of broad interest. Contemporary organizations often have a propensity to grow, but they usually do not show the same desire to overpower and integrate rivals because they lack the same imperative to promote a comprehensive ideology. Instead of fighting against groups with similar aims, disease activists are frequently make alliances that can last for long periods or even just for individual protests. Affinity groups are usually those that share a great deal in common, perhaps even all of their core values, and can work together, but which are sufficiently different that they cannot be amalgamated.

<13> ACT UP was very effective in joining with much different kinds of organizations in pursuit of common goals. A prime example is the 1989 “Stop the Church” demonstration launched with the help of Women’s Health Action and Mobilization (WHAM!), which was attended by around 4,5000 protestors. The goals reflected the interests of the coalition and included demands like safe sex education, the church’s stance on abortion, and its homophobia (Shepard; 302). The result was a huge protest using many of the characteristic tactics like die-ins and theatrical performances. The greater numbers drew a larger than normal police response and international attention. These affinity group actions are remarkable when compared with traditional labor organizing because the collaboration is between groups with divergent and even conflicting interests. They also do so without the same impetus toward taking control of other movements or forming larger entities.

<14> Later disease advocacy groups learned much from the AIDS movement, but unfortunately this came at the expense of drawing attention and finite resources to other causes. While the competition for attention and resources is not a zero-sum game, groups are clearly hurt by the prevalence of similar organizations or causes that work in the same domain. Over the past two decades the number of organizations doing disease activism and the number of diseases with public campaigns has increased, and this has taken its toll on the older organizations. For the past decade the chapters of ACT UP and other AIDS organizations have been far less active or even ceased to operate altogether (Dailey). Their past radicalism is certainly gone, with few protests to rival those that initially drew national attention to the disease. Moreover, with AIDS now an accepted part of mainstream healthcare discussion there is no longer the same sense that something drastic must be done to get attention , nor is the disease as mysterious or as often fatal as it once was. Thus, to some extent the decline of ACT UP is a sign that the group was successful and that it need not be as vocal as it once was. It is also a sign of the effectiveness of alternative ways of promoting an interest.

Breast Cancer and the Importance of Symbols

<15> Before the feminist movement, there was a major problem with breast cancer and other conditions affecting women going unreported. Women were often too ashamed of their affliction, too embarrassed to receive treatment, or too afraid that they would be disfigured by surgery, to seek medical treatment (Lerner). Evidence of breast cancer goes back thousands of years, and so does the record of women being prevented from understanding of their own condition. Treatment has changed a great deal over time, but the sexism evident in it has remained fairly constant. Women were often given little choice over treatment; the tough decisions were made by their husbands or the doctors. This led both to insensitive treatment and treatment without consent. The medical profession has long been dominated by men and focused on their concerns. In the late 1970s fueled by victories elsewhere, many women began to organize to assert their right to determine disease treatment and to get more equitable distribution of research funds. It was only in the past three decades that women made a concerted effort not only to raise money for research but also to take control of their own treatment.

<16> In the 1970s and 1980s when the first groups began to form, there was more at stake than just fighting a disease. It was also battle over women’s right to control what happened to their own bodies. "Underneath the conflict over the best way to control breast cancer is a more fundamental difference of opinion. It has to do with how we, as women, can best assume control of our bodies and our lives" (Batt; 137). Early groups grew out of two sources. First, there were support groups for women with the disease and for survivors coping with their physical and emotional trauma. Second, there were feminist groups already working on women’s reproductive rights, an issue that intersected with the cancer activists’ desire for control over their own bodies. The National Organization of Women (NOW) was particularly important in opening this second route (Freeman). Thus, breast cancer activism grew out of an existing institutional framework, much as the AIDS movement did (Freeman). What makes the breast cancer movement particularly interesting is that it is the most successful disease related activism in terms of generating money and it pioneered many of the most effective marketing tools used by disease advocates.

<17> The sense of a broader community is clear in the rhetoric of those who support the former causes. Ellen Leopold argues that fighting for women’s health care is a countermovement resisting a history of assaulting women’s bodies with medical treatment. “Assaults to women’s breasts – either by disease or by medical treatment – have come to express, in a more concentrated form, the more generalized violence to women sanctioned by society as a whole” (Leopold; 30). From this perspective, the disease has immense symbolic significance as it strikes at one of the symbols of femininity, and because treatment so often results in its destruction. Though the battle over women’s healthcare was fought on a number of fronts, breast cancer became its defining issue in the 1990s. It was, and continues to be, a very popular cause. This popularity led it to become less radical, more inclusive, and more commercial. Though many groups continue to be as dedicated to feminism as their predecessors, most of the large groups like The Susan G. Komen Foundation make no presuppositions about political affiliation and do not connect the disease to political, environmental, or social problems.

<18> Organized breast cancer activism predates the AIDS movement by decades, but it was only in the mid-1990s that breast cancer became widely recognized as an important issue. Around this time, government spending on the disease increased dramatically (NCI), and so did private contributions. While this success is due to a confluence of forces, one of the primary reasons is the movement’s effective use of symbols. Symbols have always been important to activists. Although they simplify an ideology, reducing it to a shadow of its true complexity, they are essential for rallying supporters, invoking a common sentiment, and promoting the message to others. The communists’ red flag, crusaders’ cross, or national bird are powerful symbols of popular causes, but symbols such as these usually resist the sort of commodification and distribution on a large scale that has emerged with cause-related marketing. Signs of radical groups are particularly ill suited for distribution. Red flags, stars, and pictures of influential leaders like Lenin and Mao were ubiquitous in state socialist regimes, but they were generally presented in a way that affirmed the dignity of their cause. The signs of contemporary social movements, by contrast, are pervasive in a different way; they change form and context in a manner that would have been regarded as a debasement of the symbols by other groups. This probably owes much to the success of contemporary social movements, yet it is not uniformly positive.

<19> The breast cancer ribbon was probably the first widely recognizable activist symbol in the US and Britain to not only be widely reproduced, but placed on virtually every surface, associated with any product, and reproduced without much contextual sensitivity beyond the imperative to raise money. The idea to use ribbons as symbols started in 1979 when Penne Laingen tied yellow ribbons around her trees when her husband was taken hostage in Iran (King; xxiii). Originally, breast cancer ribbons were peach. Charlotte Haley began making peace ribbons in the early 1990s and attached them to notes that called attention to the National Cancer Institute’s tiny cancer research budget. Self magazine tried to borrow the idea, but when Haley refused because of worries about commercialization, the magazine decided to use pink ribbons instead. They were an instant success, and throughout the 1990s companies seeking to cultivate a good public image began marketing pink ribbon products. Some of the profit from these products went to funding disease research, and in return companies benefitted from a better public image and, in some cases, improved sales. This was a remarkable turning point in the history of activism because the pink ribbon products were symbols of disengaged activism. It was possible to take part in the breast cancer movement by simply going to the store and buying the right things.

<20> Breast cancer activism owes much of its success to being a social movement against which few objections can be raised. Unlike AIDS or lung cancer, which are linked to certain behaviors, one cannot blame the victims of breast cancer. Many companies see disease marketing as one effective way of cultivating a good public image and selling more products (Benioff) . With breast cancer, their image is improved even more than it might be for helping other causes because the disease lacks negative connotations. It is unlikely that the movement would have been as successful had it not been for the activists attaching the symbol to every sort of product imaginable. One can buy cereal, yogurt, makeup, bags, and nearly everything else from companies that promise to make contributions to a charity. There is an apparently seamless merger of consumerism with social responsibility. This strategy works well for the charities and for the companies who can attach the pink ribbon, or any other symbol tied to a similar project, to their products. It is successful because it asks so little of contributors; they hardly need to alter their lifestyle to make a contribution.

<21> There are positives and negatives associated with the rampant marketing of symbols. The breast cancer movement is one of the most financially successful disease related actions tin history, if not the most successful. Marketing may be a perfect way of raising money, but the it has come at the expense of the movement’s past radicalism. It encourages activists to be more moderate so that they can receive corporate funding, and possibly as a side-effect of working alongside corporations. For this reason, most breast cancer organizations now have a conservative tone, especially the larger ones. There is clear regret in the writings of many of the early activists who are displeased to see it become simply a struggle against a particular disease rather than a broader fight about women’s equality. “Nothing is more controversial among advocacy organizations today than the issue of corporate participation in fund-raising” (Kedrowski; 184). Relying on corporate help, whether it is in the form of direct funding or a unified cause-related marketing campaign, raises a number of ethical concerns.

<22> Many activists are now disillusioned with the movement. Samantha King argues that the current trend in cancer activism is to promote positivity – to tell victims that they should look on the bright side and try to find a pleasant way to endure their condition. She characterizes this as a move from activism to complacency and acceptance (King; 104-5).The feminist writer Barbara Ehrenreich expresses the same worries in her essay “Welcome to Cancerland.” She considers the “cult of pink kitsch” an attempt to promote stereotypical femininity and to encourage passive acceptance of the disease (Ehrenreich). Batt invokes up Noam Chomsky's propaganda model and argues that breast cancer passes through these media filters that separate consumers of media from the truth of what the disease is like. "cancer charities hold up the Rosy filter to breast cancer" (Batt; 233). She proposes a far more radical use of symbols. Like the AIDS activists who were aggressive with making their disease and its consequences known, she thinks that cancer victims out to stop trying to cover up the signs of their suffering. Batt thinks that tricks like covering up the baldness, wearing prosthetics, and trying to look normal are things that normalize the cancer victims and hide the from others true effects of the disease from others. She also argues that there is a kind of solidarity in showing off signs of struggling against cancer and being able to identify fellow victims (Batt; 235). This is a tactic more suited to ACT UP than to most of the breast cancer groups, and it is one that would certainly get a great deal of attention, however, abandoning the marketing approach in favor of direct action would mean sacrificing what has made breast cancer activism so financially successful.

<23> Despite the critic’s contentions, the problem is not as simple as one side being right and the other wrong. Even if we assume that the cause-related marketing is misguided, it is still clearly contributing something. The pink ribbon is valuable in promoting awareness and raising money. Unless it is completely tainted by a particular association, that message can help to keep the issue in the public consciousness. One potential solution is oversight. While this cannot prevent the dilution of a particular message, activists monitoring the use of their symbols can take steps to ensure that it is not attached to any immoral products and that corporate aid is not simply a way of increasing profits. Breast Cancer Action runs a campaign called “Think Before You Pink” that monitors pink ribbon products and is often very critical of those that do not make a contribution to match their increased profits or that sell products that are thought to contain carcinogens (Action). They provide one example of how marketing may be reconciled with ethical imperatives.

<24> In recent years, AIDS activists have learned from the breast cancer groups and undertaken their own campaign of spreading symbols. Their red ribbon is a clear reference to the pink ribbon and an attempt to profit from the growth of activist marketing. This effort seems to be successful, as the red ribbon and red products have become nearly as common as their pink counterparts. However, this campaign is only possible because of the efforts of the early activists to make the disease accepted. From their experience we can see that disease marketing not only moderates a social movement, but that it depends on some level of social support for it to even begin. If ACT UP had tried to sell AIDS products or propose fundraising ventures to corporations, they would have found little support. Disease activism follows a much different route when it starts with acceptance and institutional support, as it does with heart disease.

Heart Disease and Personal Action

<25> Of all the diseases deserving public attention, heart disease should probably top the list. It is the leading cause of death in the US and one of the main causes of disability (Prevention), though many underestimate it as a risk and overestimate the threat of contracting other diseases (Kedrowski). Based on the high death toll and lack of good judgment about risk, it would be reasonable to expect heart disease to receive the most attention from activists, yet it does not. It is a well-known condition, but it certainly does not hold as much public attention as the mortality rates suggest that it should. It seems that the prevalence of heart disease actually works against mobilizing activists. Because there are no clear victim groups, there are no existing identities to rally around and to use as the basis for organizing. Grassroots heart disease activism has therefore been comparatively weak and the initiatives directed against it focus even more on individual action than the marketing approach does.

<26> There are some natural communities in the fight against the disease – groups that have a special interest in fighting it because of their high risk, but they are groups that do not have the same abilities or incentives as the gay rights activists and or feminists. Poverty increases the risk of disease because of poor diet and lack of access to healthcare (Norton). Poor people are, however, extremely difficult to mobilize, lacking the resources necessary to form their own groups to take on social causes. What makes them a risk group is also what prevents them from organizing. A far more likely candidate for acting against the disease are people who are overweight or obese, as these dramatically increase the likelihood of heart disease. This group also seems difficult to mobilize, as it is either a temporary identity or one that activists try to protect. More overweight people are taking part in the weight acceptance movement and fighting against discrimination, but this kind of identity reinforcement is at odds with the imperative to lose weight, which is at the core of fighting heart disease.

<27> With no natural base of support to resist the most deadly disease, much of the campaigning against heart disease is done by the government, rather than by grassroots activists or corporate sponsors. Large events like National Wear Red Day are sponsored by the National Institutes of Health. The movement is more top down than the other two considered here. Rather than activist citizens trying to convince the government to devote more attention to a cause, government agencies try to spread consciousness to the public. This is certainly not activism in the normal sense, but many of the governments’ attempts to raise awareness use the same tactics as moderates groups working against AIDS and breast cancer. Government agencies have openly borrowed the tactics that proved so successful when used by grass-roots organizations and put them to use for a similar cause. The primary difference lies in the direction of pressure. This is evidence of the malleability of the particular tactics used by activists, and likewise evidence that these tactics are less successful when they come from above.

<28> Where heart disease activism stands out is in its encouragement of a preventative lifestyle. The US government has engaged in a campaign that has successfully linked to the disease to personal choices like diet and exercise. Of course, this is something that many disease advocates cannot do since causes of some diseases are unknown or their incidence unalterable. The success in this area is partly due preventative measures being possible. This personal focus of heart disease activism is partly owing to the nature of the disease, but it cannot be attributed entirely to this. AIDS is likewise a disease that can be prevented by individual actions, like condom use and ending intravenous drug use, and a great deal of energy is devoted to promoting these behaviors, nevertheless, AIDS activism has a very strong group character that heart disease activism does not. This leads the AIDS activists to simultaneously promote individual preventative measures and to fight for better research and treatment.

<29> Unlike AIDS and breast cancer activism, the fight against heart disease has a proactive tone. It focuses less on finding a cure or helping victims cope than on proposing new diets and exercise plans to help people minimize their risk. This kind of information can remake one’s personal life into one sphere of resistance; a sphere in which there is an intense personal interest in participation. The fight against heart disease is highly individualized. It is not framed as a battle of one community against a disease, but as an individual’s personal struggle to stay healthy. While heart disease activism is less successful in raising public awareness, initiating protests, and raising money, it does prove an important lesson for all activists to learn: the value of reducing an abstract goal to specific small steps. The agencies fighting heart disease have outshone most other disease advocacy groups in clearly articulating specific preventative measures that link personal actions to a mass goal.

Lessons from Disease Activism

<30> Each of these accounts of disease advocacy highlights strengths and weaknesses of new forms of activism. Perhaps the greatest lesson one can draw from these social movements is the power of activists with much different interests to contribute to the same discourse and work together in protests. This collaboration without integration or petty ideological conflicts is a promising sign that activists need not spend as much time fighting amongst themselves as they have in the past. It is increasingly possible for distinct groups to work toward common ends in particular issue areas, then part ways on other issues, without the groups expending all their energy attacking each other. Even though disease advocates compete for the same resources, they rarely attack rival organizations. Stories of cooperation are far more common than those of conflict.

<31> Cooperation also takes place in a very broad sense. The AIDS and breast cancer movements benefited from others’ work in questioning the authority of the medical profession. In the past, it was unthinkable for untrained citizens to take such an active role in their own healthcare. Activists of the 1970s, 80s, and 90s initiated a remarkable shift by asserting control of their own bodies and demanding to have a voice in research and treatment. This change will likely have a strong effect on other issues in the coming decades as the logic of personal control is extended to other areas. Heart disease awareness campaigns reflect this change. They are primarily conducted by government agencies, but the fact that they actively seek to persuade citizen to behave in a particular way, using reason and specific plans, shows a profound respect for each person’s ability to decide their own healthcare interests.

<32> The second major lesson is the significance of natural communities. Causes fare best when they are not isolated or entirely new. AIDS and breast cancer organizations benefitted immensely from existing networks. The former was able to mobilize gay rights activists and the latter was initially composed of feminists and women linked by support groups. It is doubtful that members would have been as committed if there were not already interpersonal ties and a powerful common identity linking them. Steven Epstein suggests that the reason AIDS activism was stronger in the US than other countries was because the US started with a much stronger gay rights movement (Epstein). Heart disease receives less attention than these diseases, even though it kills far more people, because there is no specific effected group that can organize to oppose it.

<33> The lesson that other activists can draw from this is that even when a new issue is encountered, it should not be treated as something novel. Instead, new problems should be shaped to fit existing frames of reference. This history of disease activism suggests that the more some existing community can take responsibility for a cause, the more effective the cause will be. This is particularly true when the members are part of a marginalized community – even when few outsiders would identify them as such. This is clear with cancer activism in general. In the 1990’s women were clearly the ignored group, and this outsider identity worked very well in generating revenue from the government and private contributors. The women were so successful that it generated a countermovement by men suffering from prostate cancer. These activists often present themselves as the new marginalized group that suffers from inattention because so much help has been given to women. Of course, whether or not either was actually underprivileged is less important than that activists in each movement felt that they had to correct a major injustice.

<34> In the past decade, there has been a huge increase in the prevalence of the symbols of disease-related activism. A number of causes have followed breast cancer in creating ribbons or emulated the yellow bracelet of testicular cancer. These symbols quickly become degraded and turned into fashionable accessories with little intrinsic meaning, but even so, this process of popularization generates a great deal of attention and money. Of course, there is a limit on how successful such campaigns can be. Only a finite number of different colored ribbons and bracelets can be created, and, more significantly, there is likely a saturation point at which the prevalence of disease marketing will lead to significantly diminished returns. Examples of the former problem are easy to find. Heart disease awareness uses the same red ribbon as the AIDS activists, making the symbol ambiguous and requiring that each accompany it with text to specify which disease is being referred to. The necessity of attaching descriptions shows the weakening of the symbol and its inability to stand for a particular cause in isolation. There is now such an abundance of cancer ribbons that it is difficult to distinguish them. There are variations in the color shade and ribbons that mix colors. The symbol has little effect when observers cannot distinguish one cause’s mark from another’s. The challenge for those who wish to emulate the effective dissemination of symbols is thus to find new forms of presentation or to recognize a popular new form of cause-related advertising before it becomes overused.

<35> Finally, these three movements show the successive decreases in the extent of member involvement and some potential methods of combating this. Attending an ACT UP demonstration came with a high risk of being arrested or attacked. The group’s aggressive style meant that only those ready to face this danger could take part in resistance. Breast cancer demonstrations were comparatively moderate, even before the movement became dominated by politically conservative groups. Now, the primary forms of action are participation in walks, letter writing campaigns, and the distribution of information. Such activities involve little risk. This is out of necessity, as many members are casual participants who are difficult to mobilize. Heart disease activism is even more personalized, since the primary focus is what individuals can do by themselves. While the lack of popular engagement in contemporary social causes is disheartening, there is a powerful lesson to be learned from the increasing emphasis on individual action: organizers can be more effective if they provide ways for less committed members to make small contributions. Even if these members can only be persuaded to take small steps like boycotting certain products, or changing their lifestyle, this can have a powerful influence on a large scale and is certainly more effective than excluding those who are not willing to participate more actively. This is particularly important for causes that lack any natural communities. In such cases, there will already be more emphasis on individual actions because of the lack of strong interpersonal ties.