Last week, I had a good conversation with a gentleman about my quest to help women take ownership of their BRCA data. The word ‘feminist‘ came up as we talked.
I began to think more about the words we use to define and name ourselves.
Take the word Previvor for example. This word have been used by women in the BRCA community since 2000, after a challenge from a community member who said she “needed a label.” Yet, many people within our community – and the larger breast cancer community – have strong negative reactions to this word.
And what about the word advocate versus the word activist. Do they have a different connotation? Can I call myself one or the other?
I wonder whether the word ‘feminism’ should to be included in a conversation about BRCA, when BRCA affects both women and men. Are we advocates, activists, or even BRCActivists? Is it appropriate to use the word ePatient if many within our community perfectly healthy and want to stay that way? Are we brave? Are we fearful? Or something in between?
And I also think about how we define participation for community in new ways. Do we need permission to call ourselves citizen scientists if we seek to move beyond breast cancer awareness to seek a more direct connection with research? Or is this just a new buzzword for patients who participate in research studies? What words should we be using to name ourselves in the context of history as we make choices about our bodies and our genetic information? What is in a word?
I think we find our power in who we are.
I like writer/director Joss Whedon’s take on the word feminist, and the words we use to define and label ourselves….