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.
No Half Measures 
I just want to share my feelings about being the parent of an activist and an advocate!! You are remarkable!! You are making life better for sooo many with both of your chosen hats!! As a mother of an activist and a former advocate, I did not understand the strength of my daughter and her brilliant brain. I wanted her to slow down as I witnessed the side effects of chemo and saw her fighting so very hard to remain in both categories of activist and advocate, but these two positions kept har vibrant!!! She mentioned to me many times that her activism and advocacy were along with the love of her sons, keeping her alive!! The language of Cancer is still very foreign to me, thus I spent most of my time praying!! It is a certain amount of love which we parents have for our children which praises both activist and advocate!! But mostly it is pride!!! We raised children who care!! And I see this in you!!! YOU CARE!!! So in my words!!! Never Stop!! Your mix is helping sooo many!! YOU GO GIRL!! My daughter, Bethany was my proof reader, thus please excuse this comment if it doesn’t make sense!!❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
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Your comment made perfect sense and I so appreciate your support even though it has to be triggering in light of your loss. Love and hugs to you. ❤️❤️
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Your works make me feel a continuation of Bethany and the pride I felt for her activism and advocacy!! I am so fortunate to have met you and your mother. Sad circumstances, but such a tribute to my brilliant, caring, daughter.❤️You actually make my loss so much more bearable and I thank you so very much. Hugs to you, and your family❤️❤️❤️❤️
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Love and hugs to you as well. 🙂
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Praying for the strength and stamina – mental, physical, emotional – to continue to act as advocate and activist for yourself and so many others. What an impact you have made on so many lives as you have soldiered on through the highs and the lows. 🙏❤️🙏❤️
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Thank you, my friend. I so appreciate your support. ❤️
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Amen! 👏🏽 I switched to a different PT place after discussing what happened to me with my doctor’s office. They still haven’t called me back from the other place. It really is so much more emotional when WE are included in who we are advocating for. When the negative reactions happen, we take them so much more personally. How can we not? I’m still dumbfounded how we can all be clueless about exactly how broken the system really is.
My dad was hospitalized at the VA and they put him in a warehouse with a makeshift divider, and one bathroom for the floor. He not only complained, but started taking pictures. 😂 (Can you tell we’re related?) They ended up with police officers being called, but then moved him to a regular room promptly. I didn’t even have to get involved!
Bravo, Dad! Bravo anyone who stands up for anyone, no matter which hat they wear, even if they only have the energy to stand up for themselves. It’s truly an art! ❤️
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So very true! It is so hard to advocate for something that is happening to you personally and to have to count the cost of speaking up when you have less energy because of the reason you have to advocate in the first place. 🙂
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Exactly. I spoke up and I’m glad I did, but now I have to drive twice as far for PT. *sigh*
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And you can’t get that time back. This is an example of how no matter what we do, patients at the end of the day usually/often are the ones “penalized.” I’m so sorry.
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I’m not typically a confrontational person, but when it comes to the medical industry we have to be advocates and activists. If there is one problem that I would like to be solved for future generations it would be fixing our broken health care system. Why should people who are already sick and battling have to fight so hard for something that should be a given?
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I totally agree with you and accept that much of our efforts won’t likely bear fruit for us. I think of my kiddos, though, and my nieces and nephews and great-nieces and great-nephews. They deserve better.
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Reblogged this on By the Mighty Mumford and commented:
SSHE IS DOING WHATEVVER ITT TAAKES…TO BRING MEANAING AND COMPASSION TO LIFE!
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Thank you for sharing! Yes, meaning and compassion are so very important.
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THEY ARE—-‘CAUSE TIME GETS SHORTER.
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Hi Abigail,
When you think about it, it’s outrageous that patients have to work so hard sometimes at being advocates and/or activists. Like being sick, or needing healthcare of any kind, isn’t hard enough.
I hadn’t really thought about the advocate vs activist differentiation, but now that you pointed it out, I see it. I agree that the activist label has a more negative connotation. Not that it should.
You’re a remarkable advocate and activist who’s making a huge impact every day. But I know the hats get quite heavy at times. I hope you can take them both off from time to time and just be.
Thank you for another thought-provoking read. Keep writing. x
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Outrageous is right. We’ve had to recalibrate quite a bit in light of my new treatment and side effucks and letting go hasn’t been easy. I still want to do all the things.
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