Pink Ribbons and Lou Gehrig: Time to Bury Useless Symbols

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People who have known me a while know that I’m no fan of pink ribbons as a symbol for breast cancer. I have the same feeling about baseball slugger Lou Gehrig as a symbol for ALS. It’s time to let go of symbols that have become useless, or, worse, misleading.

A Brief History of Breast Cancer’s Pink Ribbon

The first breast cancer ribbon was not pink.

Charlotte Haley's Ribbon

It was salmon colored. It was created by a woman named Charlotte Haley, who had seen a lot of her family struggle with breast cancer. Charlotte wanted to see more done to address the breast cancer epidemic. Inspired by the AIDS ribbon, she created salmon colored ribbons out of cloth, put 5 of them on a postcard encouraging people to contact their elected representatives, and sold the postcards for 5 bucks each so she could make more.

Estée Lauder, the cosmetics company, and Self Magazine, a woman’s publication, quickly recognized the profit-making possibilities of the ribbon. They approached Charlotte, claiming that they cared deeply about women and wanted to make her ribbon the international symbol of breast cancer. Charlotte thought that was more about the companies’ bottom lines than about women’s lives, and refused to partner with them.

The companies were advised by their lawyers that they could use a ribbon; they should just find another color. So the companies asked focus groups of women to identify the color or colors that were most reassuring, non-threatening, and comforting – everything a breast cancer diagnosis is not. The color they came up with was pink.

The Komen Foundation (now called the Susan G. Komen for the Cure Foundation) tried to trademark the pink ribbon. When that failed, everyone and their grandmother starting using it to symbolize breast cancer. Briefly put, because anyone can use the pink ribbon, everyone does, from marketers of products to huge organizations. The pink ribbon has made it possible for breast cancer to become the poster child of cause marketing by companies trying to improve their sales by linking their products to the breast cancer cause. Some people and companies merely sell ribbons (made of everything from cloth to platinum and diamonds) and keep all the revenues; others use it promote sales of other products (everything from toilet paper, to cars, to

I cannot make this stuff up

guns) by promising to donate a “portion” of the proceeds to breast cancer research.

This is not your imagination

Sometimes the ribbons are placed on products that are bad for our health. For more information on the exploitation of the pink ribbon, see www.thinkbeforeyoupink.org.

 

How Many Things Can a Pink Ribbon Cover Up?

Billions of dollars have been raised in the name of breast cancer research. We don’t know how much of that money actually goes to research. We don’t know what kinds of research are funded with that money. And the research funders often tout how much they have spent without every reporting whether the research has benefited women’s lives. What we do know is that the epidemic rages on, the incidence of breast cancer continues to increase, and the death rate does not decline.

When you ask most people what they know about breast cancer, if they can say anything, they will say something about the importance of mammograms. But there is so much more to breast cancer. To name just a few things that the pink ribbon doesn’t represent: the limits of early detection, the ineffectiveness of current treatments to keep women with metastatic breast cancer from dying, the environmental triggers of the disease (only at most 10% of breast cancer is caused by an inherited genetic mutation), and the racial inequities in both the incidence and mortality rate from breast cancer.

Many of these issues are illuminated in the new documentary from the National Film Board of Canada, Pink Ribbons, Inc., by director Léa Pool and producer Ravida Din. The film was inspired by a book by of the same title by Samantha King. The film is now being shown at film festivals outside the United States. It should be in theaters here by February, 2012.

If we’re going to focus on what needs to happen to end the scourge of breast cancer, we need to find a new symbol, one that actually conveys the impact of the disease on people’s lives and that doesn’t lend itself so readily to corporate exploitation or to covering up the realities of the breast cancer.

Maybe if we put our heads together we can come up with a new symbol. Ideas?

Lou Gehrig: May He Rest in Peace?

Lou Gehrig died of ALS in 1941at the age of 37. Many people who think they have never heard of ALS have heard of Lou Gehrig’s Disease, the “popular” name for this devastating illness. By now, more people probably know Gehrig for his illness than his baseball prowess

Gehrig died more than 70 years ago. Since he died, many more people, some of them quite well known, have died of ALS. Yet, in nearly every story about ALS, Gehrig’s name appears, often with a picture of the baseball player standing hale and hearty with a

The famous Lou Gehrig

baseball bat in his hand. He doesn’t look sick, let alone devastated by the physical ravages of ALS.

Is it any wonder that the public doesn’t understand what ALS is when the symbol they see is so unrelated to the realities of the disease? Wouldn’t a better symbol convey the real life circumstances of 21st century people with ALS? Just because “Lou Gehrig” is easier to say than amyotrophic lateral sclerosis, that doesn’t mean Lou Gehrig is a good symbol for the disease today.

Good Symbols for a Change

For people to be motivated to care about and work to change either breast cancer or ALS, the need to understand what these illnesses are and how they affect people today. Appropriate symbols can help convey that understanding.  Let’s find and use symbols that at least hint at the realities so that people might — just might — be motivated to change them.

© Barbara A. Brenner 2011

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21 Responses to Pink Ribbons and Lou Gehrig: Time to Bury Useless Symbols

  1. Rob Tison says:

    I so enjoy your blog. Thank you.

    You are right about Lou Gerhrig not giving an appropriate image of ALS. I am also growing tired of him referred to as “the luckiest man alive”. What few know about that famous speech, is that his wife and doctor had concealed the information that ALS was always terminal. He was told he had a 50/50 chance of beating ALS, and he didn’t know how devastatingly quick progression would be. If he had known the truth, would he still have considered himself “the luckiest man alive”?

    I have ALS, and I am not feeling so fortunate to have won the wrong lottery. But, Barbara, us PALS are so lucky to have you advocating for us! Again, Thanks!

  2. ENV says:

    Actually, Rob, the “luck” to which Gehrig referred was the opportunity to play baseball for a living and the adoration he received from so many people. It was his extreme personal humility that made him such a compelling figure.

    Rather than abandon Gehrig as a symbol, I believe we should reconfigure his symbol to a person at the pinnacle of success brutally cut down in his prime; a death sentence to an innocent from which there is no appeal. Further, the future impact to families should be considered as the damage inflicted by ALS lingers long after the PALS has died.

    • June C. Cavalier says:

      Lets just find a cure for this horriable disease & who care about a ribbon Or other symbol, its not important only finding a CURE is. Please lets ge together & speak up for somone to look or work on a cure, Me, I have M.S. of which there is no cure, but I consider myself lucky because dying from ALS is much worse. Good luck to one & all with this fight to win these uncureable diseases

  3. Rob Tison says:

    But, his speech was in the context of his diagnosis, and he mentioned he had a lot to live for, presumably thinking that a real possibility:

    “‘Fans, for the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth.
    .
    .
    .
    ‘So I close in saying that I might have been given a bad break, but I have an awful lot to live for! Thank you.’

    The story of Lou Gehrig is heroic, but the image of him in his prime does little to bring awareness to realities of the disease, the point I believe was being made.

  4. RKN says:

    Barbara,

    I respectfully disagree on the usefulness of the Lou Gehrig connection.

    As Mom dealt with the frustrating lack of awareness and understanding of ALS, she said, “Thank God for Lou Gehrig or the disease wouldn’t even have a name that anyone could remember.”

    ALS becomes one of the bag of “letter” diseases that Americans can’t keep straight.

    This morning there was a nice segment on our local news on ALS and an upcoming walk, and the graphic that the station showed said “ASL.” The visual reinforcement that our city got was that thousands would be walking for American Sign Language.

    Lou Gehrig encapsulates much that is important for the public to understand. He was an incredible achiever and picture of health who was cut down in his prime… and went from Yankee Stadium to the cemetery in a short two years. He had the fame and fortune that would have permitted him access to the finest in cutting-edge medicine, but there was nothing in 1941. That leads us to the outrageousness of the same situation today. Science has done so much since 1941 but has failed to deal with ALS. In my opinion, Lou Gehrig is an important historical and personal reference for many reasons.

    I realize that every year few and fewer people relate to Lou Gehrig… that was so long ago. Certainly we need to expand the understanding of all of the famous people who have been taken by ALS so that there will be more reference points for the public to grasp and remember.

    Certainly it’s Lou Gehrig’s Disease and Barbara Brenner’s Disease and Jane Doe’s Disease, and I’ll agree with enlightening people that it can hit anyone, anytime.

    ALS awareness has been an Achilles’ heel of the fight against ALS since I’ve been involved. Lou Gehrig provides a name that people can remember and some life characteristics that can click with people. I’ll agree that Lou’s isn’t the only name that the public needs to associate with the disease, but unfortunately his connection is still relevant in 2011.

    My few cents fwtw. Thanks for an interesting topic.

  5. Mary Whitehead says:

    I made a pin with a pathology image – my OWN pathology – which I wear to conferences and meetings; I get many strange reactions, even from the BC community. Thus I believe many people (men as well as women) have no idea of what the disease really looks like, and how immunohistochemistry stainings affect the visual imagery. It brings it home for some; it scares others; and some don’t really care. It healped me to look at the imagery – like diving through an inner tube, it helped me get to the other side, after treatments, and to deal with the disease. It is an educational tool.

  6. Mark Brenner says:

    First of all, I have to disagree with Barbara (likes that’s something new!) about Lou Gehrig. The link of his name ot the disease is probably the only reason why the vast majority of Americans even know what ALS is.

    As to the pink ribbon and the “Cancer Industry”, I have a question I am sure someone reading this also has. If so much money has been raised to fight and research cancer, and a large portion has gone to drug companies (a guess but I’ll bet on it), why do the drug companies have to charge so much for the drugs if contributions and the federal government and footing a large part of the bill?

    For those of you soon to celebrate the New Year, a L’Shana Tova.

  7. bbzinger says:

    Actually, the vast majority of American’s have no idea what ALS is, call it whatever you want to call it. That’s my point.

    The answer to your question about why drug companies charge so much is because they can. I blogged on that a while ago ;-)

    L’shana tova. See you soon.
    BB

  8. BobO says:

    Lou Gehrig isn’t relevant to most people today. Think Lou Gehrig and the face most people see is Gary Cooper. I’ve met a lot of people with ALS, and, aside from the obvious, not one had anything in common with a professional baseball player.

  9. Chuck Hummer says:

    Let’s face it once something has been branded changing that long established brand can do more harm than good. ALS awareness is fighting an uphill battle now, I would think changing now can be destructive rather constructive. I continue to get blank stares when I tell those inquiring why I am in a power air, speechless and often drooling. But when I say I have Lou Gehrig’s disease I get far more knowing comments. To be sure there are far to many for whom to continuing the blank stare is frustratingly common.

    It is my belief that fundraising for patient services and research depends largely on a strong foundation of awareness. Do I think branding can be more supportive of awareness but much of this battle falls to those of us living with ALS much like fundraising through such things as walks. Until and unless we force our national ALS organization to step up their anemic awareness efforts we must be the ones to write Letter to the Editors, loacal media or develop and actively present such gripping displays as the Piece by Piece display developed and being shown all over Florida, Chicago and three venues in Wasington, D. C.

    I strongly agree that we can and must do better but diminishing the 70 year old branding is not the way to accomplish this.

    Do I consider Barbara’s blog an excellent weapon in the awareness battle my answer is a loud “YES!” we need to get more readership and participation in of and in her blog.

    I always look forward to an email announcing Barbara’s latest blog. Thanks Barbara.

  10. Cindy Pearson says:

    It seems like it’s important to talk about how disease “awareness” is always necessary to make progress against the disease. But “awareness” sometimes also interferes with real progress against the disease. Barbara has done a lot over the years to help people realize how the pink ribbon, supposedly about awareness, is now part of the problem. Even setting aside the harm caused by pinkwashing, the basic idea that women can protect themselves by being aware is just wrong. Mammograms aren’t prevention. Early detection doesn’t guarantee a cure. All those problematic messages have been wrapped up in pink ribbons. And they get in the way of really making a difference.

    Is referring to ALS as Lou Gehrig’s disease part of the problem in the same way as using pink ribbons to symbolize breast cancer is? Does it get in the way of progress? It’s true that using the visual image of someone who died 70 years ago might make the disease somewhat distant and unreal, as compared to using pictures of people who are living with ALS right now. But it seems to me that what Lou Gehrig conveys isn’t actually wrong in the same way those breast cancer awareness messages are wrong. Lou Gehrig was famous for being able to perform at the highest level of professional sports without ever missing a day — being relatively indestructible. Then ALS happened, for no reason anyone understands, and he was brought down. It seems like using Lou Gehrig’s name to convey that essential truth doesn’t get in the way of making progress.

    Barbara, we rarely disagree about things like this. I’m looking forward to hearing more from you about sympbols & ALS activism, next time you’re ready to blog about it.

    PS: And I can’t stand that we have to wait until February to see the Breast Cancer documentary. It sounds super!

  11. MEW says:

    Even this who hear Lou Gehrig’s disease have no concept as to what the disease is, how it ravages the body…unless they have been personally associated with a person diagnosed AND know that person through the stages of ALS. Knowing someone or of someone diagnosed does not educate on the reality of the disease. Spemding time with PALs through their journey is the education of the disease for non-PALS. Seeing a person healthy and fit one day and confined to a wheelchair or bed on another occasion is “contrast” of the physical impact of the disease, but it certainly is not education.

    Often those who hear Lou Gehrig Disease form the association as a disease that a famous baseball player was dx with and died. They association further is with men in their 60s or older. Ignoring the age Lou actually was and that thousands are dx each year and the impact to younger and younger persons appears to be growing. There is no focus on the lost demographic, the young children robbed of childhood because a family member has been dx and now the children become caregivers in some capacity because of the financial devastation that comes hand-in-hand with the disease.

    Our society is willing to part with millions of dollars in support of non-profits wanting money for animals and children. Non-profits for ALS Research need to change society’s paradigm/education of ALS to be inclusive of the destruction to the children and the family unit as a whole in order to compete with other organizations receiving money for their causes.

    A symbol for ALS? Maybe it is a simple “black” ribbon representing death….

  12. MEW says:

    Reposting without typos from auto-corrections…. Sorry

    Even those who hear Lou Gehrig’s disease have no concept as to what the disease is, how it ravages the body…unless they have been personally associated with a person diagnosed AND know that person through the stages of ALS. Knowing someone or of someone diagnosed does not educate on the reality of the disease. Spending time with PALs through their journey is the education of the disease for non-PALS. Seeing a person healthy and fit one day and confined to a wheelchair or bed on another occasion is “contrast” of the physical impact of the disease, but it certainly is not education.

    Often those who hear Lou Gehrig Disease form the association as a disease that a famous baseball player was dx with and died. The association is further with men in their 60s or older. Ignoring the age Lou actually was and that thousands are dx each year and the impact to younger and younger persons appears to be growing. There is no focus on the lost demographic, the young children robbed of childhood because a family member has been dx and now the children become caregivers in some capacity because of the financial devastation that comes hand-in-hand with the disease.

    Our society is willing to part with millions of dollars in support of non-profits wanting money for animals and children. Non-profits for ALS Research need to change society’s paradigm/education of ALS to be inclusive of the destruction to the children and the family unit as a whole in order to compete with other organizations receiving money for their causes.

    A symbol for ALS? Maybe it is a simple “black” ribbon representing death….

  13. Mayumi Terada says:

    Barbara,

    Just a thank-you note from a Japanese cancer patient advocate. I’m a breast cancer survivor who have learned a lot from the BCA’s “Think before you Pink” campaign.

    Back in 2008, a Japanese magazine for young women launched a stupid pink-ribbon charity project, publishing a sexy semi-nude photo collection of models and talents, all healthy with no breast cancer. Many patients got hurt and angry with this. At that time, I was just an ordinary cancer patient who had had a lumpectomy about a year before. But the stupid campaign and people’s anger made me feel that I needed to something. So, I protested with my friends collecting more than 1800 sign-ups. During that time, I came to know BCA and “Think before you Pink” campaign. You taught me how to look at pink-ribbons critically, and how it’s important to act for cancer survivors. Thanks to you, I grew up from a patient to an advocate, I guess.

    My interests have been gradually broadened toward the evidence-based cancer screening and health care. I’ve been trying to tell people to look at the facts, not just cute ribbons.

    So, thank you so much for being a great fighter!

    As for the “Lou Gehrig” symbol, he is not that famous here in Japan. I guess the acronym “ALS” is mostly used, although not many people know about the disease.

  14. RKN says:

    Regarding the awareness concept — I think that it is important for ALS.

    There is a consistent reaction that I’ve heard among people who have been diagnosed with ALS — shock to learn that there isn’t a treatment or a fair fight. They and their families do a fast forward through a Kubler-Rossian maze and often end up with some rage. We need to instill a bit of that rage into society in order to raise ALS as a priority. It also wouldn’t hurt to make healthy people squirm a little to realize that any one of them could be next.

    A troublesome fact that I’ve learned is that the large governmental agencies that invest billions in medical research tend to set priorities based in disease prevalence. In the case of ALS, the low prevalence is the problem, and we have done a very poor job of explaining that. To me, “awareness” includes ways of making the case that a disease with a high incidence and low prevalence is a much more urgent problem than a disease with a higher prevalence. ALS is a cruel game of musical chairs where we keep pouring more people into the room with so few chairs. The few chairs are the problem. We don’t make our case very well and as a result, we are assigned a very low rung on the governmental research ladders.

    I think that there is an awareness problem. Our ALS organizations are inept at addressing it. Unless they get past their self-serving tactics (and the tendency to turn everything into a fundraiser), they are not the answer to the awareness problem.

    Back to Lou… I would love an organization that would embrace a tagline like, “Lou Gehrig’s Disease — I’ll bet you thought it had been cured by now.”

    • bbzinger says:

      We need a new ALS organization, but look at breast cancer if you want to understand how to stand out in a crowd. Edgy, pull no punches, clear mission. Take a look at http://www.bcaction.org. I wish I had the energy for this, but I don’t. But I know what it takes — I did it in breast cancer. I’m happy to consult with any group of people willing to give it a try.

      BBZinger (aka Barbara Brenner)

  15. Karen Stevenson says:

    Barb — Last Sunday, the day you made this blog post, I had the truly bizarre experience of getting caught in a Komen “race for the cure” in Central Park. I was visiting friends in New York City, and I’d gone for a run around 10. a.m. The “pinkers” had taken over most of the routes, so I had to thread my way through them. I was struck by how happy they seemed, as if they were really “making a difference,” a hackneyed slogan if ever there were one. Among the goodies bestowed upon them at the finish was, incongruously, a pink foam Statue of Liberty crown, which many participants had donned to celebrate their achievement. Many wore signs such as “in memory of Mom,” or “in memory of my Grandma.” At one point, I merged with tand throng and heard over the loud speaker, “let’s hear it for the survivors,” which made me feel strange, since I am one, but invisibly so. Later that day I received your blog post, and wished I could have broadcast it to the thousands who’d “run for the cure” that day. Keep up your strong and important voice, Barb.

  16. Lee G says:

    First, let me say I love this blog and the healthy dialogue it fosters. I am mixed abt Lou Gehrig as a reference. He’s here to stay as a reference point but should be expanded upon. Last year ALSA Bay Area attempted to do this with their I Am Lou campaign. People with ALS posted pictures and profiles on the website, including young, vibrant, single women and men, people with young children, and outspoken people with the familial and sporadic form of the disease. And I am encouraged by the social networking of people diagnosed in their teens and 20s who are bringing new perspectives and approaches to educating the general public about this disease. I hope, along with Barbara, they will bring fresh and radical thinking to this forum and shake up the status quo. Heaven knows we need it.

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