#PullUpaSeat

Advocacy, General 3 Minutes

As many of you know, I’m white and my husband is black. Before I met Elliot, I didn’t understand much about the experience of those who are black in our country. Elliot (and his family) have taught me so much about race and the experience of those who are not white in our country. After my MBC diagnosis, I’ve also heard and seen the experiences of black people within our medical system up close and personal. Listening to the experiences of those I care about as they navigate a system that makes me as a white lawyer who doesn’t mind doing battle for what I need feel helpless and powerless breaks my heart day in and day out.

I’ve often struggled with how best to help. As a lawyer, wearing the hat of an advocate comes easiest to me and offering to attend appointments as a mentor, friend, advisor, etc., has been my pleasure. I’ve seen over and over that my friends are treated differently when the eyes of a white patient is on the medical professional. I’ve also had the opportunity to participate with the Tigerlily Foundation in a variety of ways as they have come up with projects aimed to educate and address disparities.

Today, I want to share three ways that I’ve participated, which I’m hoping will help each of you think about how you too can be an ally in the struggle to end disparities in care for black people with breast cancer.

The first way is to take the Inclusion Pledge. You can find that here. The description on the website is stellar, but let me add my own interpretation — taking this pledge means that you will look around you wherever you are and notice if there are no black or brown faces around you. When you are in an advocacy or public role, you will turn down opportunities if black or brown people aren’t included on the stage with you. We white people need to use our white privilege to take note and notice when our black and brown colleagues are excluded, when our black and brown colleagues are sidelined, when our black and brown colleagues need to be included. We say “Nothing for Us, Without Us,” in the MBC community as a way of addressing when medical discussions happen without the patients, that applies here too. It is up to us to ensure inclusion and diversity wherever possible.

Secondly, is to talk openly about what we see and how we deal with it. I gave an interview about my experiences and how I’ve dealt with that to My Life Matters, a Virtual Magazine, entitled “Interview about Allyship with Black Metastatic Patients.” As a white woman, I do see it as my responsibility to use my white privilege to bring up these issues, addressing them as I see them. Each of us will do this differently. Honestly, I’m more apt to scare the medical professionals with the possibility of legal ramifications because that’s my lane. You may do that in a different way, the point is to notice it and talk about it. I’ve learned as a white woman that race is a constant thought and a constant issue in the black and brown community. When we white people ask questions and talk about what we see, we aren’t bringing up something that our black and brown colleagues aren’t already seeing or thinking about.

Third and finally, volunteer to help when asked. Tigerlily and GRASP have partnered to facilitate #PullUpaSeat, which is a wonderful virtual event that brings black and brown patient advocates together with medical professionals to have an open and honest conversation about disparities and how to address them. Those of us who are white allies serve as witnesses, notetakers and backup. I’ve learned so much more from my black and brown colleagues as they share their pain and trauma with white and black and brown medical professionals, some of whom walk into these sessions not buying into the issues of racial disparity or systemic racism in our country. Facilitating these important conversations is so important and I’m honored to help any way that I can. Here‘s an example of these #PullUpaSeat events.

Maybe none of these examples resonates with you. That’s fine. My wholepoint in sharing my experiences and these examples is to get you thinking. How can YOU help? What is within YOUR wheelhouse? Everyone is different and everyone brings something different to the table, the point is to come to the table, show up, listen, learn, and then take action!

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

17 thoughts on “#PullUpaSeat”

  5. Abigail heads up the link for the first letter is connected to a 404 page. But you’re spot on. My dads second wife was Sri lanken and his first partner after my mom back in 1972 has a mixed race 1/2 black 1/2 Puerto Rican son my step brother Derek. This wasn’t obvious to me as a young kid, but I was not brought up to think skin color or race meant to reduce someone’s human value. But being Jewish I’d already had my share of anti-Semitic digs by seven years of age. Imagine the looks as we would sit eating breakfast at a country kitchen on one of our camping holidays together. It never even occurred to me they were looking at Derek I thought it was because I was a Jew. The life I led because of my father was one of inclusion and of love for everyone regardless of skin color, religion, background, or any difference visible or not. It never made sense to me growing up and as a result I couldn’t understand the anger directed at me growing up as one of those who were racist because I was not of color. None of it made sense. I grew up in a different time with parents who I know hoped by the time I was older that racism wouldn’t be a problem off our world but their optimism didn’t play lot the way all of us hoped. The notion we still need to explain any of this due to ignorance not only angers me but baffles the mind. Especially this comment: I’d rather vote for Obama than a woman.

    We have much work to do. My father was director of the Haitian refugee center on 54th street in the heart of little Haiti (great Haitian restaurant with the BEST GRILLED CONCH EVER- in the Miami Beach areas – better even in than in Haiti) with Reverend Jean Juste who to me was Jerry. Rev. Juste was murdered before he could become the elected president of Haiti and this was my world as a teen ager. My life wasn’t the norm I know, and I’d always persisted that my boys were to never assume the value of a person someone’s heart by what they thought they knew by what they looked like on the outside. I reminded them frequently that just because they “don’t look Jewish” didn’t give them the right to use language that would hurt them against others and to stand up for what they knew was right. We teach our children how to respond and we also teach them to be racists. I hope our next generation improves the 4 years of steps back we took from 2016-2020. Sadly it’s still increasing at an alarming rate.

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  6. This is a most valuable post, Abigail. In so many important ways, we’ve seen institutional racism rear its ugly head in health and medicine.

    I’ve written about detection and treatment algorithms that have been found to unjustly discriminate against Black people.

    https://annieasksyou.com/2020/08/05/black-health-matters-too-the-role-of-race-in-life-and-death-medical-decision-making/

    Recently, I read that studies have shown less reliability in the results of pulse oximetry devices on more deeply pigmented skin. This fact can be especially crucial in detecting and treating COVID-19 among people of color, but also asthma, etc. The CDC has claimed that the problem is in home devices alone, but medical experts are pushing for widespread testing in hospitals and other medical settings.

    So any steps to bring greater recognition to the needs of people of color as patients are urgently needed.

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  7. A wonderful share, I agree with you totally. It’s only when we get up close to we understand what other people are going through, that black and brown are treated differently and it is time to support them. 🌹❤️🌷

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