Tell us about yourself. Did you grow up here? If not, what brought you to the Boston area?
I’m originally from Jamaica. I came here when I was seven turning eight. I moved here with my mom because life in Jamaica was getting really dangerous. She was a police officer and she was getting a lot of threats. Sometimes, being a cop in Jamaica can be really dangerous. She wanted at better life for her kids, and so she moved us to America. Moving here was different, because in Jamaica I was raised by my Grandmother. My mom was a young mom and she had to find work wherever she could get it. So, she worked in a different town, which meant that I didn’t see her often. So, when I moved to America, I didn’t know my Mom as well as I knew my grandmother.
We came straight to Boston. My brother was already here, so it was me and my mother and my brother. Living here was very hard, because we came here on a visa that we overstayed, so we ended up becoming undocumented. Also, within a year of moving here, my grandmother back in Jamaica died and I was nine. She passed from a stroke. And my mother said I couldn’t go home to the funeral and I didn’t really understand why. I couldn’t understand the concept of being undocumented or the threat of deportation. It was devastating for me. Now that I’m older, I understand why we couldn’t leave.
So, I grew up American. My mom was really insistent that we spoke proper English and that we tried to fit in as much as possible. She would say, “This is your life now; we’re not going back.” Because I was so young, I didn’t realize that I was leaving a part of my culture behind.
So, we lived here undocumented for a long time, until I was 18. And then my father, who was living here before and was a citizen, filed so that I could get my green card and be able to work and go to college. So that worked out well.
When I was in high school, I met Lily [Huang]. I was just 16, so I was still undocumented. I met Lily on the train. We were sitting across from each other. It was so serendipitous that I met her. She was asking people on the train to sign a petition to stop someone from being deported. I asked “You can stop someone from being deported?” Lily asked me to volunteer. [Lily Huang is Executive Director of Jobs with Justice; see a transcript of our conversation with her.] She said she had a number of undocumented people volunteering with her organization.
And I was shocked! I said, “So, there are people who help people who are undocumented?” I had no idea organizations like this existed. I thought all undocumented people were hiding. She invited me to stop by the office, so I did and she talked to me about the organizers who were helping and the coalition she was forming, and immigrant services organizations that were helping each other, so I decided to get involved. I volunteered and I went to protests, which was scary, because I was afraid of getting arrested.
So, it was scary, but it also gave me a sense of empowerment, because my voice deserves to be heard. Being undocumented doesn’t make you any less of a person. When I was old enough to understand, I was told that I needed to conceal myself and now I was involved with an organization that said, “No. You have people who will protect you.”
At the time, I had intestinal issues and pain in my abdomen. I missed two years of school. I was going to a charter school at the time that wasn’t really handling the situation well. They were trying to find a way to force me out of the school. My mom didn’t know how to handle it. And since I was undocumented, I was afraid to speak out about what was happening to me. We didn’t feel there was much we could do.
The school ended up giving me zeros for not being in school for that time. The doctors were handling it poorly. They limited the number of times I could go to the emergency room or see a doctor. Now that I’m older, I realize that those things were unethical. You can’t dictate how many times a person goes to the hospital. At the time, they said I was being dramatic about the pain.
And so, I talked with Gillian, who was the co-director of Jobs With Justice at that time, about chronic pain. She made me realize that I wasn’t the only one who suffered from chronic pain.
So, I found out at that age [16] that I wasn’t alone. And that gave me my confidence back and pushed me to find a place where I belonged instead of trying to fit into these places where I wasn’t wanted.
So, I left the charter school and I applied to the Community Academy of Science and Health, which is a school right behind Fields Corner. It’s a school that’s a part of the Boston Public Schools. I did it on my own because my mom was definitely against me leaving the charter school. I don’t think she understood how toxic it was to be in that situation.
I always wanted to be a doctor. So, the school’s focus on science and health was right up my alley. Moving to another school was the best decision I ever made. It gave me a fresh start. No one had an impression of me; they actually accepted that I was in pain and that I needed time to step out of the classroom—and that there were certain times that I couldn’t come to school. So, my teachers were very understanding about that.
Maybe because they had the words “science and health” in their name.
Definitely! I was shocked to find out that the charter school had given me a zero for the two years I was out sick, so my grade point average was just one. And I learned that they had denied me a scholarship that I earned with high MCAS scores. My guidance counselor at the new school reached out to the old school and then I found out that I actually did get the scholarship. So, it was an ordeal.
But everything lined up when I was working with Lily and going to a school that supported me, so I was able to focus on my studies. My pain became manageable. I also got involved in Model U.N. because I wanted to be able to find a way to combine human rights and health. [Model UN is a simulation of the UN General Assembly and its other multilateral bodies where students perform an ambassador role while debating topics of international interest.]
I believe that there are places where we should feel safe, like school and hospitals. Those are the things that felt the most unsafe to me, because my status had been more important than my education. Health is not seen as a human right here. It focuses on whether or not you have access. And access could mean a bunch of different things. You could live next to a hospital and still not have access to it.
So, with all of the background that I had, when I went to college, I decided to go pre-med, but also study human rights, so that I would have a strong human rights background as I went into medical school.
Right now, I’m at UMass Boston am on track to finishing my bachelor’s in science. I also tacked on a master’s in global inclusion and social development, which is part of my human rights minor so I’ll graduate with my bachelor’s and my master’s. I haven’t started applying to medical school yet, which is another hurdle, but I’m ready for it.
Right now, I work at the Brigham [Brigham and Women’s Hospital]. I’m working on a couple of research projects there, mostly in public health and community-based health care. So, I’m working with communities of color to make sure they are represented in research. That’s something that hasn’t happened. And sometime when research comes out, it’s focused on Caucasian populations and middle-income people and not on low-income communities of color. And you really can’t generalize research in that way.
Another thing I got interested in—and something that’s really my passion—is how hospitals are so close to neighborhoods of color and poor neighborhoods, but they aren’t able to treat them. I found out that sometimes it has to do with insurance. Like one hospital takes a specific insurance, while others take another kind. My teacher calls it the “Cadillac of health insurance.” Not everyone has access to the best insurance, so that stops people from being able to get the care that they need.
A lot of what I’m studying has to do with health efficacy, which is whether a patient wants to change a health behavior or feels they have the power to change their health. That puts a lot of pressure on the patient, but it’s really a systemic issue. It’s like a community of work that needs to happen—it’s not the patient’s fault.
We know what area of community life you’re going to talk about when we ask you what challenges we face in our community and how we might go about meeting them.
A lot of the work I want to do is international and global. I think that the U.S. is in a little bubble. So, for medical school, I’m probably going to study abroad, but for my residency, I’d like to be in Boston. There’s no better place to be a resident.
So, now you’re 24 years old, and when you think about the future, we assume that health and human rights are the issues you are most concerned about when it comes to the next decade.
We need to hold institutions accountable. I think institutions have to be able to protect information and property, but I think they have a level of autonomy where doctors can do and say things and not necessarily have to face repercussions. So, I’m thinking about accountable medicine, and I think hospitals are taking steps toward that. I’ve been talking to a lot of women of color. So, you go to the hospital as a woman of color and, instead of figuring out what’s wrong with you, they give you an excuse for why you feel the way you do—refusing to acknowledge how you feel.
Right now, I’m going through symptoms of endometriosis, but when I go to any health professional, no matter where I go, and I tell them what’s happening to me, they will say, “Well, that’s not necessarily what’s going on.” But I think they need to give more credit to their patient, because the patient knows their body more than anyone.
Do you think it’s because you’re a person of color that this happens?
Yes, and also women are just starting to be heard. So, adding “woman of color” onto that is another level. There are studies that show that doctors and medical students think that Black people, in general, have a higher tolerance for pain. And they think that Black women have a higher tolerance for pain or they’re exaggerating their pain.
There was a woman who had a clot close to her heart. And she went to the hospital and told them that she thought she was dying. She said, “I need your help.” They said, “You’re fine.” They gave her a couple of aspirin and sent her home. She said that, as soon as her husband pulled into their driveway, she felt in her soul that if she went inside and laid down, she would die. So, she said to her husband, “Take me back to the hospital and demand that they give me a CT scan and an MRI.”
So, he had to yell and scream, and finally they did the tests and the doctor apologized and said, “If you had laid down, you would have died.”
There are so many stories like this that you hear from Black women. The response is, “We’re sorry.” And that’s not enough.
Another issue is that we’re told to trust doctors, but we’re not really taught to challenge them. And I think that the city or the state should require that doctors have training in different cultures. Cultural competency is not enough. Usually, there is one class in that at the end of your training. That’s not enough. We deal with so many people every day that we need it at every step. So, that’s something that we need to require, or else it’s just going to keep on happening.
Do you think we’re going through a watershed time, because of the pandemic and the economy and Black Lives Matter, that could really change things on a deep level?
We’re experiencing the second wave of Black Lives Matter. The first wave happened when I was applying to college in 2016, when Trayvon Martin was killed. There was a spirit of heightened cultural awareness or political correctness. What happens is that it dies down because it isn’t injected into our society as a whole.
What we’re seeing now is that people who weren’t invested in BLM in the beginning are energized and are becoming involved. And now we’re in a period four years later, and in a Trump administration no less, and so that energy got reignited by George Floyd’s death. And now we have a new wave of the moment. But I think that this time what needs to be done is that the people who are policymakers need to hear what BLM is saying. There are two stages as far as listening is concerned. The first one is that those in power say, “I hear you.” The second one is when those in power say, “I hear you and now I’m going to act.” The action is missing. And that’s what makes sustainable change.
It’s like when we talk about accountable medicine, but in fact we have to “do” accountable medicine.
What do you think makes a strong leader? Do you have thoughts about that?
Yes I do. Right now, during the pandemic, my friends and I have been taking turns being counselors for each other—like life coaches. One of the things I’ve learned, which is essential, is knowing how to listen and how to help. People always feel that advice is what they need to give; how to fix things. And sometimes advice isn’t what needs to be given. You need to ask the person, “What do you need from me? Do you need me to listen as you vent, or do you need me to give you advice?”
I think there has been a lot of talking at communities of color and there’s not much of listening to what they need. There’s wording right now about “empowering communities to act.” I think that’s indicative of not really listening to the community, because you can’t empower anyone. People have to empower themselves. I don’t think that power is something that you can give. I think people already have power and it’s up to them to command the space that they’re in.
And I think that a good leader says, “What is the space that you need?” They know what they need and they know what’s realistic—if they would just be asked.
What I see in research is that there’s a lot of going into the community, taking from the community and not bringing back to the community. So, that’s something that needs to change. A lot of this information is stuck in the ivory tower of research. They hoard it away in institutions and it costs money to access it. What if you’re just a regular community member who wants to know about this stuff? It’s hidden in a medical journal and, when you get there—assuming you can pay for it—you can’t understand it because it’s not translated into language that you can understand.
We have leaders right know that are just not listening. They aren’t listening, but they’re giving a bunch of advice. They have a limited perspective. No one has any idea about what anyone else’s experience is. And so that’s why we have to ask people what’s going on and what they need. It seems so simple, but I think the higher up we get, as people, the more education, the more money, what happens is that we think we’re endowed with some kind of privilege. I think people stop listening to people that we think aren’t at our level.
I think a good leader needs to acknowledge that they have these limitations and it’s not about me. I have to act.
Change is incremental. It’s not going to happen overnight, but we have to move forward. People think that it’s wrong to look back. But I think it’s only by looking back that we can know where to go.
Did you have anything else you wanted to talk about?
Well, I think that my friends and I often talk about how Boston is very segregated, especially where I live. I live in Dorchester and it’s a 15-minute walk to Ashmont [the MBTA station]. I live kind of in the middle. I would have to walk about two miles or take a bus to go to the grocery store. We have two corner stores, but they’re very overpriced; everything is marked up. For vegetables, you might find lettuce and tomato, so you could make a salad. Why can’t grocery stores be in the neighborhoods where people need them? I mean, there are neighborhoods where you need to walk five miles to a grocery store. I can only go to the grocery store twice a month because it’s so far away. And then I have to go to the corner store. I think about larger families that don’t necessarily have the ability to do that.
We have ATMs in the neighborhood, but they charge three dollars every time you want to get cash. And certain places will charge you for using your card. And then they ask you for your ID.
It brings me back to the point where all of these things are connected. If the child isn’t able to get the nutrition that they need, then they will have problems in school, and their health will be bad. So, you have research and the research will say these kids need more nutritious food, but then it’s back to the underlying problem.
I think about these things and it frustrates us. I have these conversations with my friends all the time. We’re so young and we want to help, but how? How do we do that? And when you see people in positions of power who can’t even make change happen, it’s very frustrating. We’ll keep on trying though.
