Making the right kind of trouble.
I’m sitting here in a hotel room, in a chi chi Hyatt in Washington, D.C., awaiting a room-service dinner. Nothing fancy, just a caesar salad and a croque monsieur (that’s a grilled ham and cheese sandwich). It’s the end of Day Two of the 2011 Advocacy Training Conference, organized by the National Breast Cancer Coalition, and my brain is absolutely brimming with information. The conference officially opened yesterday morning, and it’s been pretty much a non-stop training session since. My head is so full right now, I begged off going out to dinner with friends so I could begin to share some of the experience with you. I thought I would start with why I decided to attend.
So, why am I here? Why this conference, this organization, in particular? Because, first of all, it’s not some pepto-pink pep rally. In fact, even though there are some 700 women and men in attendance, there’s no more pink to be seen here than you’d see on the average city street on an average spring day.
I’m here because this conference is not about raising awareness of breast cancer. No one at this conference needs more awareness. Most of us here have had it ourselves, so if anything, we’re all too aware of it already. Neither is anyone here to invent new and cutesy forms of cause-related marketing, or sign up corporate sponsors to sell more pink products that nobody needs.
I am here because all the pink product marketing and all the awareness groups and all the gazillions of dollars spent on research have scarcely nudged the real bottom line for breast cancer — namely, mortality and incidence. I am here because, despite the hundreds of breast cancer organizations in this country, it is still a struggle for a person with breast cancer to get what she really needs before, during, and after treatment. I’m here because, despite the thousands of people working on raising awareness of breast cancer, many of those people still think that early detection is what saves lives, that breast cancer is ‘curable,’ that many more women now survive breast cancer than they did 20 years ago. And those people are sadly misinformed.
I am here because, over two years ago, when cancer treatment side effects kept me from going to a breast cancer awareness event with friends, those friends evidently thought that the cause was best served, not by helping me cope, but by going to that event without me. There’s something wrong with that.
I’m here because the NBCC was bold enough to set this deadline:
After two days of presentations about where we are really at, where we need to go, and how we can get there, I am grateful that no one here is using coy euphemisms for our breasts. I am thankful that these NBCC folks and their speakers — who include activitists, physicians, scientists, journalists and survivors — are smart and well-informed, and that they ain’t fooling around. I am delighted because I have gotten to meet four other breast cancer bloggers and trouble-makers like myself, with whom I had bonded in cyberspace and now have finally bonded with in person. I am heartened because here, I am surrounded by hundreds of other people who, like me, are not afraid to speak up and cause trouble. I am here not to behave myself. I am here because well-behaved women rarely make history.
I am here because I am tired of coming upon other women, other breast cancer survivors, others who work — and work hard — on breast cancer awareness, who themselves don’t really understand where we are at and how far we have to go, who don’t understand the insidious trivialization and gender-stereotypes inherent in the pink hype, who don’t realize how pink-washing ultimately perverts the message we really need to communicate and prevents genuine awareness. I am tired of having my zest for advocacy, accuracy, candor and compassion mistaken for negativity and neurosis. I am tired of people trying to make breast cancer ‘fun’ and ‘sexy’ and ‘pretty’ when my friends have metastatic breast cancer in the brain, bones and lungs. I am tired of being told to ‘get over it.’
You get over it. I’m busy trying to learn how to make breast cancer go away. Forever.
Please click on the post title or the comment link below to post a response.