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.