I was reading some articles recently and came across some discussion about the difference between the titles of “advocate” versus “activist.” It stuck out to me since I’ve often described myself as an advocate throughout my career as a lawyer and more recently, as a patient advocate. And yet, I’m realizing that advocate doesn’t wholly describe who I am and who I’ve been.
Let’s look at some definitions first …
An activist is defined as a ‘person who believes strongly in political or social change and takes part in activities such as public protests to try and make this happen’. As a young person, being an activist is often much less daunting than entering the world of advocacy. Why is this? Advocacy is presented as a much more refined practice as opposed to activism, and in some sense, this is true. To be an advocate is ‘to publicly support or suggest an idea, development, or way of doing something’. Therefore, an advocate can be understood as the one who listens, the one with the specialized knowledge; whereas, activists are the ones who make the noise. Protests, marches, events that create an impact and make people listen – whether they want to or not.https://usidhr.org/activism-vs-advocacy/
I deliberately selected the above quote from the website of the US Institute of Diplomacy and Human Rights (USIDHR) because diplomacy is a concept wrapped up and intertwined with these terms, probably more so with advocacy. It is interesting that advocacy also carries connotations of being more refined or dignified than activism.
From the various articles I read, the concept of activism typically brings to mind marches and sit-ins and protests where there are sometimes police with riot gear and tear gas. We’ve seen a lot of activism in recent years with regard to the systemic racism historically and continually perpetrated against people of color in the US. These gatherings get attention, a response in the moment and otherwise. From the suffragette movement to civil rights to the AIDS movement, people who were willing to put their physical safety on the line were part of making change.
In the MBC community, we have a few organizations dedicated to this type of activism, most notably METup and METupUK, both of which have their own individual focus and goals. As many of you may remember, Elliot and I participated in several Die-Ins in Washington DC as part of the Metavivor Stampede where we marched several blocks, ending on the lawn in front of the Capitol Building and laid down to visibly demonstrate the number of deaths each year from MBC.
Under the umbrella of advocacy, I think there are many more organizations within the MBC community. Each organization has its own focus and goals and they vary much wider than the activist organizations I named above. Metavivor is focused on raising funds to sponsor research projects and does a lot to highlight the experiences of those of us living with MBC with a particular focus on storytelling; additionally, there is a committee and many volunteers that have continued the legislative advocacy of the Stampede virtually over the last few years. In 2019, I participated in the Hear My Voice Metastatic advocacy program through Living Beyond Breast Cancer, where we were deliberately and directly trained to be advocates. I am looking forward to participating in the Project LEAD Institute this summer, which is organized by the National Breast Cancer Coalition. This training program focuses on the science of breast cancer so that advocates understand more about where to focus their advocacy.
As you can see, I’ve participated as an advocate and as an activist, depending on the project or the needs of the issue. After my reading and pondering, I do think that I tend to default to more of an activist role, even though I’ve typically used the title or label of advocate. Perhaps that is because of the inherent/instinctive different connotations of the different terms or maybe just that I didn’t fully understand the difference.
At the end of the day, these labels are just more/varied “hats” that can be worn as necessary. I’ve found that different issues or dealing with different companies take a different touch or beginning when an issue is identified. Perhaps it is my activist hat wherein I always retain the ability to “out” or shame companies on social media or in other public ways if the more collaborative pathways are unsuccessful. Shifting back and forth between the two is pretty fluid for me and the speed of the shift to more of an activist mode is often affected by my pain levels.
Advocating for myself or addressing issues as an activist that affects me directly has an emotional component that wasn’t there when doing so on behalf of others. This adds a layer of desperation that can be overwhelming and yet extremely rewarding at the same time.
And so I conclude that I will continue to accept that I am both an advocate and an activist, that I will wear the hat that makes the most sense and that will be the most effective, until I can’t. The necessity to spend as much energy as I often do is simply a symptom of the brokenness of the US medical system. It takes so much out of patients to just get the care and concern we need.
And that’s often the last straw.