In an earlier post, I wrote about Rose Kushner, wondering why her name and voice had been sidelined in the story of breast cancer activism. If anyone could be considered the heir to Kushner (insomuch as I understand her story), it is my friend and inspiration Barbara Brenner. Barbara put up her final "Healthy Barbs" blog post earlier this week. I will miss her fierceness, passion and uncompromising intelligence. I got to know Barbara as the head of Breast Cancer Action; back then, as I recall, the organization’s motto was, “The Bad Girls of Breast Cancer.” I liked that.
It often took me years of conversations to catch up with Barbara's thinking. She was the one who first talked to me about the over-promise of mammography. She also talked about the lack of centralized data on cancer patients and cancer research. That just sounded wonky to me, ut now I finally get how critical that work is.
Barbara may be best known for coining the term “pinkwashing" (again, years before anyone really "got it."). Pinkwashing is when companies claim to care about women and breast cancer by sporting the pink ribbon while at the same time producing products linked to the disease or other threats to public health. There are legions of examples. In my recent Times article I wrote:
Having football teams don rose-colored cleats, for instance, can counteract bad press over how the N.F.L. handles accusations against players of rape or domestic violence. Chevron’s donations to California Komen affiliates may help deflect what Cal OSHA called its “willful violations” of safety that led to a huge refinery fire last year in a Bay Area neighborhood.
Barbara was first diagnosed with breast cancer in 1993 at age 41; about three years later, she had a local recurrence. Then, after fifteen years of breast cancer activism, she contracted another disease--ALS. Often (and incorrectly as she would tell you) called “Lou Gherig’s Disease,” ALS is a fatal degenerative neuromuscular illness. Barbara wrote a post about this outstanding PSA, put together by supporters of football player Steve Gleason to raise needed awareness, and how it differed from the typical pink-ribbon feel-goodism:
Discussing the two illnesses on her blog, “Healthy Barbs,” Barbara wrote:
The issues are both different and remarkably similar.
How I think about this illness and how I react are influenced by my years as a breast cancer activist. How people deal with me now makes me think about how people deal with others who are ill. The purpose of this blog, Healthy Barbs, is to encourage people to learn to think in new ways about illness and health and to prompt them to be critical of the mainstream coverage of health issues.
It’s not meant to be comfortable. It’s meant to make people THINK!
That is Barbara: it's not about making nice. It's about understanding, thinking, getting stuff DONE.
The last communication I had from Barbara was on May 7 in the comments to my previous post about Nancy Brinker's 64% pay raise. Barbara wrote: “Actually, Brinker is still the CEO. She will have that title untl Komen hires her replacement. Who in their right mind would take that job if Brinker is still involved? Got me.”
On May 8, just one day later according to her Caring Bridge site, Barbara decided to stop taking nourishment. She continues to take liquids.
I hope she won’t mind that I’m copying part of her final post here:
I have been blessed to lead a rich life, full of love and culture and travel and work that had meaning for me. I have no regrets except that I got ALS in the first place.
I have met amazing people both in person and on-line. Everyone I have come in contact with has had something unique to offer the world. The world is a better place because these people are or were in it. Some of these people I have mentored (and you know who you are), others have taught me. What I know about all of these people is that I have been blessed to know them, and that they will succeed at what they set their hearts and minds to do.
In the Jewish tradition there is a Priestly Blessing. I copy below it because it is what I wish for all readers of these words:
May the Lord bless you and keep you; May the Lord make his face shine on you and be gracious to you; May the Lord turn his face toward you and give you peace.
Barbara, you have made a difference in my life--and in that of so many others--as well as in my work. Your voice and spirit will always be in my heart. I love you. I will miss you.