Health Activism: Not for the Faint of Heart

I have been a health activist since 1994. Having spent a long time in the cancer field, it seems that now I am destined to become an ALS activist. I just can’t seem to help myself.

Wearing One Hat

I think a lot about what it means to be a health activist, and how that differs from being an advocate. When I was a member of the California Breast Cancer Research Council, I would show up at meetings and claim my name card for the conference table. On it would be printed my name, my organization, and the word “advocate.” That title was there because the legislation that created the program required that a certain number of council representatives be “advocates.”

My experience in breast cancer taught me that many, if not most people, who called themselves advocates had no clear sense of what they were advocating for. Many of them represented two — and often more — different organizations with different missions and objectives, and they would tout the position of whichever organization suited their purposes at the moment. Others went from one organization to another until they found a place where they could claim their views as those of the group.

In my lexicon, an activist is someone who is clear about her/his goals and strategic about achieving them. S/he cannot be bought – no amount of money or privileges will change her commitment to her goals.

Clear Goals

In breast cancer, there are many goalsthat require activism, for example, better detection devices, better treatments, better access to detection and treatment for everyone, uniting and refocusing the research agenda, fighting breast cancer “fatigue” brought on by pink ribbon marketing. While some activists take on more than one of these issues at a time, all will require a lot of effort by a lot of people.

In ALS, the issues seem, by contrast, much easier to list. They are, however, no easier to achieve. In fact, I can think of only two at the moment (though I’m relatively speaking new to ALS, so the list may grow): better treatments and access for everyone affected to the kind of care that will improve the quality of their lives.

Challenges for ALS Activists

One of the differences between breast cancer activism and ALS activism is that many people survive breast cancer for a long time, so many people have time and energy to get involved. With ALS, while some people live a long time, the disease is always fatal and always robs people of some physical abilities. It’s harder to be an engaged activist. So, we do what we can.

Beyond Self-Interest

Regardless of the disease at issue, a health activist is also someone for whom her goals, while they might benefit her personally once they are achieved, are aimed at affecting people she doesn’t even know. The goals are about more than self-interest: they are about changing systems so many people who now suffer will benefit. More often than not, those goals and objectives are bigger than can be achieved in one lifetime, and activists know that their efforts are possible because of previous work done by others. They also know that, if they do their job right, others will come after them to advance the work.

Taking the Heat and Keeping An Open Mind

Health activists have to be tough. Because they publicly take principled positions, there are always people who disagree with them and say so, sometimes in not-so-nice terms. If an activist caves because her positions have been criticized, she’s not really an activist.

I learned this lesson many times in my breast cancer work. When I criticized raising money by putting pink ribbons on products to promote sales, many people got angry, wondering how anyone could criticize money being raised for breast cancer. When I argued that the drug Avastin should not be sold for treatment of breast cancer, I was accused of sentencing women to an early death. And when I endorsed the mammography screening guidelines that would end routine screening of women between ages 40 and 49, I was told I would have blood on my hands.

ALS is not as prominent as breast cancer. But when I recently posted my blog entitled “Science By Press Release – Not Good for Patients” to a site for ALS patients, there were a lot of people who disagreed with me, saying I was depriving them of hope. I’m used to this. If you’re an activist who can’t get used to it, you might want to find another line of work.

This doesn’t mean that activists never change their positions, but it does mean that those changes are the result of changed conditions or developments that compel a shift in position because the old positions don’t make sense anymore.

Doing the Work, Getting the Rewards

Activists want to make the world better for people. They are committed, tough, and they are not afraid to speak their minds. Many are willing to learn the nitty-gritty of the issues with which they are dealing so that they can engage in intelligent conversations with people who have power on those issues.

Being an activist is not for the faint of heart. But the rewards are often great. You meet great people, you learn a great deal, and sometimes, just sometimes, you make a difference in the world.

© Barbara A. Brenner 2011

This entry was posted in ALS Treatment, Breast Cancer, Health Policy and tagged , , . Bookmark the permalink.

16 Responses to Health Activism: Not for the Faint of Heart

  1. You’ve nailed it once again.

    I’ve found that some people may embody both roles as advocates and activists but one does not imply the other. Sometimes advocating for an issue may allow you to do so at arms length. But when I think of an activist, I see someone who is willing to stand up alone at times for their beliefs, get dirty when necessary and not be afraid to act, put their bodies on the line. On some issues I know I am an advocate for others a die hard activist.

  2. Nancy Oster says:

    I’ve always found you to be a valued resource is separating the wheat from the hope-based marketing chaff.

  3. Gail Kaufman says:

    Barbara:
    As always, your voice is as clear and as strong as ever no matter what ALS is doing to your ability to speak. Thank god for computers and web sites so your wisdom can be widely shared. So wonderful to see you and all those who have been touched by you on Saturday.
    Gail

  4. Elizabeth Pritzker says:

    Rock on, Barbara! As always, your aim is true. And, I am dancing to the beat that your heart and hard core activism are playing. Much love, E.

  5. All I can say is, “What she said.” I haven’t spent nearly as much time as you in advocacy/activists groups — at a certain point post-AIDS I just couldn’t take it anymore. As you know, though, I did serve my time in a number of “progressive” non-profits. What was always confounding and frustrating were all the ways in which the “advocates” (and most weren’t really activists, as you mean the word here) who were involved in those groups, whether as EDs, staff, or volunteers, weren’t there just out of a political commitment but because they were working out all kinds of complicated and often unresolved psychological issues — white guilt, racial/class/gender anger, ambivalence about power/privilege (always bad — unless your organization helps you get some), etc. So it doesn’t surprise me that some of the reaction to your post among ALS advocates was negative. I can’t think of a better test of the difference between an advocate and an activist than that statement: “Don’t tell me the truth; I’d rather have ‘hope.’” Lie to me, baby….

  6. BobO says:

    I can’t wait to see what the future holds. I’ll learn a lot from you!

  7. helen Jacobs says:

    Hi Barbara – sorry to not have been able to attend Saturday’s dinner. I was at a yoga conference for the long weekend. Thanks as always for your clear voice and vision. You do indeed have courage – to speak oout and speak up.

  8. Chuck Hummer says:

    Barb,
    It is hard to add something that has already been said. You and I are on the same wave length. The label of hope killer has tied to my attempts to attempt some balance between the fundraising “cure” illusion and reality. I hang on your every post. Where do go from here?

  9. Mary Ann Swissler says:

    Thanks for the heads up, Barbara. Still, this is the G rated version of life as an activist. I’ll bet you’ve had much worse said to you than that. You raise many important points. We all go through a lot in the name of non-corporate activism, and we all decrompress from it differently. I think it’s important to take care of yourself because it can get easy to rationalize the personal toll this work takes on one.

    Life in general isn’t for the faint of heart.

  10. Deb says:

    ALS is not a disease for the weak at heart. It seems to strike only the best of folks. We have been battling this beast for years, as I too am from a Familial ALS Family. Send me an e-mail and I’ll share our story with you. Thanks for your writings! Never, ever give up!

  11. Marjorie says:

    Excellent observations. Speaking truth to power and remaining true to the goal despite all that background “noise” is how you have always moved forward. Thanks Barbara!

  12. penny rosenwasser says:

    BB, thanks for this…as i was reading, i was thinking how so much of this relates to my longtime work for peace and justice in Palestine and Israel. A LOT of it relates, esp keeping eyes on the prize, learning how not to let the constant attacks stop me, etc. Thx always for your thinking, strategizing, clear-sightedness…xxx

  13. Denise Martini says:

    Thank you Barbara, for the articulate education about the difference between an advocate and a true activist, AND for being a living example of what a true activist in action looks and sounds like; you “live your talk”, that is greatly inspiring- Thank you! xoxoxo

  14. Nancyspoint says:

    I like your kind of advocacy, the kind that seeks and tells the truth.

  15. Cindy Pearson says:

    I agree, too. You have to be bold, be willing to upset people, and to be tenacious. Barbara, if the dictionary included pictures of people who exemplify the words your picture would be next to the word activist.

  16. nancy grail says:

    why am i not surprise that again you will fight for bettering others lives!!
    i love you

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