A headline like this is sure to peak the interest of many, and equal discomfort of others. It is a problem that not enough countries outside of the West are in fact talking about boobs and the issues surrounding women’s health care. In conservative cultures across the world it is taboo to talk openly about breasts. This reality has a direct impact on the detection and treatment of breast cancer and possess some serious challenges in how we organize awareness and advocacy campaigns for prevention.
Breast cancer is the most common cancer in women. One out of eight women is diagnosed with breast cancer annually and 143,000 deaths occur each year in Europe as a result. While the reality of cancer is grim, the good news is that efforts to address this as a health care crisis have substantially changed attitudes, approaches and outcomes for women who face the disease.
When did Women Get Active?
In Western countries, campaigns to bring attention to breast cancer began in the 1970s as women increased a sense of control over their own health and healthcare options. Women began to believe that they had a right to be active participants in their health care treatment decisions — a right that was earned and not assumed. Awareness about breast cancer shifted dramatically when women began speaking out as survivors rather than staying hidden as victims. Attitudes toward breast cancer moved from thinking of the disease as a death sentence to something that was treatable.
The second stage of breast cancer awareness moved into advocacy in the 1980s and 90s with women and healthcare activists decrying the lack of understanding of the causes of breast cancer. Advocates were successful in pushing for additional funding to examine causes and assess effectiveness of various prevention and treatment options.
What was the outcome of increased advocacy?
Increased attention to breast cancer research resulted in:
- Better surgical options
- Improvements in turnaround of pathology reports
- Treatments centers within hospitals, and
- Studies into environmental toxins and other potential causes of breast cancer, which are increasingly examined and regulated, although some would argue that despite the $6 billion raised for breast cancer each year, we are woefully behind understanding causes
The challenge: breast cancer prevention advocacy in conservative cultures
In more conservative cultures open discussion of breast cancer has historically been taboo. If the breast is associated with sexuality instead of health, some view it as immoral for women to go to the hospital for screenings or discuss it even within their family.
So, let`s get this straight. Not only are the body parts of women objectified all around the world in entertainment, media and culture in general, but when those said body parts have a problem, it is suddenly inappropriate to discuss them in what may be a life or death situation? The risk of this cultural discomfort is that women tend to die at greater rates in countries where the disease is detected later and understanding of related health care options is more rudimentary and advocacy of any sort is often viewed as inherently political.
The Middle East tends to have younger sufferers of breast cancer in comparison to the rest of the world. In Lebanon, for example, 50 percent of breast cancer patients are below the age of 50 – this compares to 25 percent in the United States and Europe. While the incidence of breast cancer in the Middle East is much lower than say Europe or US, the mortality rate is higher. According to the World Health Organization, this is because the region lacks a culture of regular breast cancer screening and therefore, early detection of the disease in part because talking about boobs is uncomfortable culturally.
Another issue concerns visibility events to raise awareness are whether they are culturally appropriate. Women and men in Saudi Arabia are not going to be running a marathon together raising funds against breast cancer anytime soon. Campaigns like Race for the Cure, which has been a great vehicle to raise awareness in the West, just don’t translate in countries like Kuwait, Libya and the like, although the United Arab Emirates started “The Pink Walkathon” a few years ago which is one of the biggest breast cancer walks in the Middle East. Where there is a will, there is a way!
So what can we do? 4 Simple Lessons
1. Target daughters as educational vehicles for their mothers
Take the approach of Europa Donna in Turkey, an organization I work with in Istanbul. Given increased attention to breast cancer prevention, every woman in Turkey above the age of 50 is entitled to a free mammogram. However, not many women take advantage of this option. The value of prevention cannot be overstated. Evidence has shown that outcomes are better when women are diagnosed and treated in units that meet the standards of EU guidelines. For this reason Europa Donna remains committed and steadfast in its mission to ensure that all women have access to high quality breast services.
“In Turkey, woman taking care of themselves is not important. They are mostly taking care of other people. If you tell them you should go to get the mammography, they don’t do it. But if you explain to their children the impact of early diagnosis through mammography and healthy living, healthy eating with regular exercise, which is hugely beneficial in the prevention of breast cancer, than they can be convinced and can encourage their mothers”¨ says Violet Aroyu, National Representative of the Turkey chapter of Europa Donna.
Through Europa Donna, high school students are the targets. All across Turkey programs are organized to provide education about breast health and cancer, so that they in turn can convince their mothers and other women in their families and neighborhoods, emphasizing the important of early diagnosis.
Peer-to-peer education has proven to be an effective means to get information to their target audience. Europa Donna uses seminars, documentaries, videos and social media sources to get their message to a teenage audience who is very receptive to the information. Read more about programs for breast cancer awareness in Turkey published in Lale, the magazine of the International Women of Istanbul. Turkey and Breast Cancer Awareness
A similar strategy, to find culturally relevant ways to motivate women to seek breast cancer screening, was rolled out in an animation video, ‘Shared Wisdom,” sponsored by GE. The video highlights GE’s “healthymagination” initiative, that works towards increasing access to high quality medical care to more people at lower costs with an emphasis on early diagnosis. Addressing the various societal concerns that discourage women to undertake breast cancer screening, the video also demonstrates how the new campaign has made screening convenient and easy to access for women.
2. Mind the culture
In countries were men are not going to be participating in the pink ribbon campaigns or talking openly with the women in their family about breast cancer, we can still push for creative and culturally appropriate awareness strategies to soften the ground, like Pink Hijab day.
Furthermore, in a campaign from Qatar, advocates designed a presentation with messages specific to the principles of Islam — what it means to be healthy and protect women through their guidebook on Muslim Women and Breast Cancer Prevention. In their material they use the words of Prophet Muhammad to make an argument for women to take care of their health as a tenet of the religion.
Prophet Muhammad (peace and blessing be upon him) is quoted as saying: “Make the best use of five things before the onset of five others: your life before your death, your health before your illness, your free time before being too busy, your youth before your old age and your wealth before you end up in poverty”. [Related by Al-Hakim and Al-Baihaqi on the authority of Ibn Abbas.]
3. Share stories
The power of storytelling cannot be overstated as an essential advocacy tool on a wide range of topics. Stories help humanize an issue. Stories create a sense of shared experience. Breast cancer survivors have been encouraged to speak out publicly as a way to reduce the stigma of the disease and educate others. Stories from survivors are used to inspire hope, motivate and comfort others. Personal testimonials are used by nonprofit organizations, large and small, as well as a frequent feature in popular culture, as exemplified in the Women’s Health Magazine. In the Middle East, an online publication in the UAE is an example as well as the Model of Courage event in Qatar, sponsored by Ford. You may recall that it was Former First Lady Laura Bush who made breast cancer in the Middle East a focus through a trip taken to focus on joint partnerships for prevention. When high profile people speak out, it creates a climate where survivors can come forward without as much stigma.
4. Run for office, ladies!
When it comes to issues of equality, ultimately all paths should lead back to getting more women elected to public office. Advocacy and civic efforts outside of the halls of parliament are not enough. Although women comprise half the population of the world, currently men make up 78.1% of seats in national parliaments worldwide. If the rate of progress stays the same as last year (about one percent difference), it will take us another 20 years before we reach parity. Likely it will be much longer! Why is this so important? Because when women are at the policy making table, issues like domestic violence, rape and breast cancer are moved from outside of the shadows and dealt with as public issues, with real solutions.
Women leaders like Pakistani politician Fehmida Mirza, a breast cancer survivor and prominent leader, have made great strides to break the silence surrounding cancer. When women are in parliament they are in a better position to advocate for women’s health issues. Not all women need to take the mantel of breast cancer or focus just on women’s issues (a label which tends to marginalize the importance of social, economic and health care topics that disproportionately impact women), but some of them have to. While we need male allies, there is no country in the world were men are the primary architects of campaigns on breast cancer or violence against women. Madeline Albright makes an excellent case for the power and potential of women and their impact on policy in her Ted talk “On being a woman and a diplomat.”
Rather than these issues being a negative to women as candidates or elected officials, they can be used as organizing vehicles and leadership opportunities. In 2010 in Ukraine I was training candidates to run for office by teaching them how to organize their campaign, develop a message and implement a “door-to-door” program in order to talk to voters about why they should elect them (what a novel concept, but in developing democracies these are the building blocks of campaigning that have to be taught). I was lucky enough to work with Zinayida, age 65, who was running for local office in Zaporizhzhya. She won her race by mobilizing a team of 20 volunteers to go door-to-door and to speak directly with voters. She was a civic leaders who ultimately gained the support of her constituents by her experience providing rehabilitation and treatment to cancer patients. Zinayida, a breast cancer survivor, made a promise to herself during treatment to step into political office in order to push for health care policies as an elected official, if she lived. She survived the cancer, ran an all-volunteer campaign with little support from her party, and she won. She wrote about her personal experience in her campaign literature making the issue of breast cancer and her personal experience an asset — in fact her main campaign message.
Women can do what politicians are failing to do in many places around the world, connect better to average voters. After all, women tend to be in touch with everyday issues. Women know the price of groceries, moms know what is like to worry about a sick child home from school, and daughters know what it is like to care for aging parents who have poor access to health care and small pensions. Some women know what it is like for be a survivor of breast cancer. We need more people in power who are in touch with the lives of ordinary people and willing to talk about issues that are fundamental to women’s health and well-being.
Tools for future candidates:
- Download the OSCE-ODIHR Handbook on Promoting Women’s Participation in Political Parties” which aims to encourage political party leaders, men and women alike, to support the integration of gender aspects into internal political party decision-making processes. It also seeks to develop the capacity of women politicians to advance their political careers.
- Turn your attention to the Barbara Lee Family Foundation´s new guide on “Keys to elected office, the essential guide for women” or a newly launched campaign VoteRunLead, based on making it as simple as possible to reach across the aisle and encourage women to get involved with tools that can help them succeed.
- An excellent library of campaign training material can be found at the National Democratic Institute‘s website in the updated Democracy and the Challenge of Change modules. These new training materials take best practices and approaches from NDI’s work around the world and make them into a set of tools to increase the quality of training programs for women as voters, advocates, elections officials, political party members, candidates and office holders. The training materials build on the 2011 guide, a resource for democracy practitioners to help them develop and carry out effective programs to bring more women in government and politics.
The Goodbye Boobs Party
Although this would not be possible or culturally appropriate in a Muslim country, it is useful to review the spectrum of communication at the grassroots — from women once they are empowered to take ownership of their health care decisions. After losing both her mother and her sister to breast cancer, Claira Hermet learned she had the BRCA 1 gene that significantly increases the risk of getting cancer. Claira made the incredibly brave choice to undergo preventative surgery by having a double mastectomy. She also had the courage and sense of humor to blog about it, raise public attention and funds for Genesis Breast Cancer Prevention. She held a Goodbye Boobs party before her surgery. When we take what are otherwise private issues and shed some light and levity on them, real change becomes possible and women begin to see that they are not alone.