Komen and Privilege

I lied. I have one more thing about Komen that drives me away from supporting them. It’s the way they have treated metastatic patients over the years. It’s a story of privilege that others in the disability community and in other disempowered communities will probably find familiar.

Let me give an analogy. I am a white person. A really white person, like, loves ranch dressing, has Mayflower ancestors, whitey white white person. I am also someone who sees racial injustices, like the Indian Heritage High School program being dismantled in my city despite its many benefits to students from a community that needs and deserves support. Now, as a white person, I know I have a shitload of privilege, and the right thing to do is to use my privilege to help a community that doesn’t have privilege.

What’s the best way to go about that? Well, the way white people have done it for centuries it to say “I know what’s best for you and I will make the decisions and you will do what I say because it’s for your own good.” This would be the absolute wrong way to go about helping. First off, unsurprisingly turns out white people didn’t know shit about what’s best for people of color. They might have thought they did, but they didn’t, because they never fucking listened to the people they thought they were helping to find out what they actually need. Second, it’s fucking disrespectful to people of color to treat them like children instead of equals. 

Instead, what we white folks need to do is listen to communities of color. We need to hear what they want from us to help their communities thrive. We need to see them as partners in this multicultural society, and find ways to work together.

It’s a similar situation for people with metastatic breast cancer. There is so much in our experiences that is about a loss of autonomy–we slowly (or sometimes quickly) get sicker and sicker as time goes on, and cancer takes away our freedom of choice more and more. I often feel powerless in the face of my disease. 

Komen, and frankly the medical establishment at large, says it wants to help us, but too often it doesn’t ask us what we want. Komen continues to spend its vast resources on things that don’t save lives while saying “We care about you and we want to help you.” But until very recently, they haven’t sat down with metastatic patients and said “How can we best serve your community?” Instead, they have just continued to insist that early detection saves lives. But whose lives? Not mine. Not the 40,000 women who die every year. It feels very insulting, and very disempowering, when the largest breast cancer charity in America dismisses the very people it claims it wants to help. 

Slowly things are changing with Komen. They’ve been listening to some friends of mine, and I am grateful for that–and I hope they will truly listen and begin building bridges to the metastatic community. But their messaging about breast cancer being cured by screening, their lack of funding for research, and their lack of a sense of urgency about metastatic disease make it impossible for me to see Komen as an ally. Komen has a lot of privelege, and it needs to realize that it’s been treating metastatic patients disrespectfully. It’s time for Komen to listen to our requests and begin to take actions that show its commitment to partnering with the metastatic community that it claims it wants to support.

Losing the Privilege of Choice

All my life, I have valued education, and so my law degree, and being a lawyer, mean a lot to me. I am very proud of those things–when people ask me what I do for a living, I’m proud to say “I am a civil rights attorney.” Even though, most of what I do each day isn’t being an attorney, it’s being a bureaucrat. It’s shuffling papers and working in a system, not doing Clarence Darrow, Thurgood Marshall, Ruth Bader Ginsburg stuff. But that title, attorney, represents the hard work I did to get it. It represents my intellect and my knowledge too. And I am proud of those things.

And now I am losing that title, because I am leaving my job to become a full time cancer warrior. And I am having the predictable identity crisis about that.

I wrote a while ago about stay-at-home parenting not being a real choice for many women, that often it happens not because women hate their jobs and want to stay home with their kids, but because it’s financially better for them to stay home with the kids than to pay for daycare. The idea that it is a choice based in personal preference is really one for wealthy people, whose incomes are high enough that they can choose to work or not to work. It’s a privilege to have choice. I always had that privilege, and was grateful for it.

Until cancer took it away.

I’d been really burnt out at work before The Cancer happened. It hasn’t been the greatest place to work lately. Don’t get me wrong, it CAN be a great place to work, and I love my coworkers, but lately it’s been a really stressful job. I wasn’t happy at work–I came home frustrated a lot, and dreaded going there when I woke up in the morning. So I suppose leaving my job should be one of those “cancer is a gift” moments where I say “Cancer sucks but it gave me the gift of leaving that job I hated.”

Except, no, cancer is not a fucking gift. It’s a monster that eats the things that define you, even things you didn’t think about being defining until the cancer ate them. Like my eyebrows. And my breast. And my job. And this blog. And my privilege of choice.

I’m coping with this identity crisis by keeping up my law license. I will still be an attorney–just not one who is working. It’s a few hundred dollars a year to keep myself licensed, an unnecessary expense in a time when our family will have to be downsizing, but it’s my way of saying FUCK YOU to cancer–by holding onto one little bit of who I am, and not letting the cancer take it away from me.