I went to Washington DC for the 2019 Metavivor Stampede, the METup Die in, and for two readings of the play, IV: A Documentary Intervention. My husband and I flew to DC on a Wednesday and returned on a Saturday. It was exhausting; physically, mentally and emotionally. It was also amazing, uplifting, cathartic, and I got to finally meet friends in real life!
After we got back and I finished with all the laundry and organization that is required when one is away from small children and a busy household, I started thinking ... why? Why did we go? Why is being an advocate important to me?
Breast cancer advocacy is instinctive
I know that advocacy is instinctive to me. I'm the eldest of 6 and I went to law school. Whenever I hear someone speaking, I can't turn off the part of my brain that is always seeking a solution to whatever is going on. I don't mind getting up in front of people, I don't mind arguing with people, I don't shrink from confrontation and sometimes prefer it. My brand of advocacy is direct and pretty forceful.
My brand of advocacy is not for everyone. I readily confess that I sometimes walk all over people and I miss important stuff when I'm barreling ahead. I think, though, examining why is super important. The why can be similar even if how it is done is different.
Why advocacy in the breast cancer arena?
Because advocacy in this arena is lacking. There is a void. People aren't talking about stage IV metastatic breast cancer. Funding isn't being allocated. Our benefits and our needs are largely ignored. We are a group that is sidelined, ignored, and discriminated against.
A historical look at breast cancer advocacy
When we were in DC, we compared our movement, the vocal metastatic community, to suffragettes, to men with HIV, to the civil rights movement. We're in good company and we can take notes from the movements who came before us, seeing what worked and what didn't work. History has taught us that a determined group of men and women can change things, can change policy, can change laws, can change how things work.
In order to be successful, it is necessary for the affected group to be joined by allies, especially when the affected group is relatively small.
All kinds of advocacy are important & effective
All kinds of advocacy are effective. I think there are as many brands or kinds of advocacy as there are people. I think it is easy to think that you have to do advocacy in one way, the way other people are doing it. I think that everyone has unique gifts that can't be compared without anyone else's gifts. I think that we need everyone's help if we are going to be effective - the job is too big for just a few people.
My why is huge, a monumental task. What is your why?
As Beth Caldwell said, on her blog, and which we reiterated in the readings of the play, IV: "We must and we will save our own lives".
How old were you when you were diagnosed with metastatic breast cancer?