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.
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.
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