Disability & Climate Justice: A Q&A with Daphne Frias

An illustration of Daphne Frias: A Latina woman with short brown hair, in a wheelchair

Daphne Frias is a woman of multitudes. 

A 25-year-old, unapologetically Latina activist with cerebral palsy, Daphne uses a wheelchair, and has since she was in elementary school. After years of multi-disciplinary activism across disability justice, climate justice, and gun violence prevention movements, her experience in community organizing is vast and intersectional.

Last year, she was diagnosed with Stage 4 Hodgkins Lymphoma, and now in remission, she is reentering the activism scene with a renewed passion for the intersections of liberation.

Daphne has worked as a New York State Director with March For Our Lives; founded her own nonprofit, Box The Ballot, which aims to harness the power of absentee ballots; and was appointed as one of the North American Regional Focal Points for Sustainable Development Goal 16 at the UN Major Group for Children and Youth.

This work has led her to speak alongside figures like Greta Thunberg, Emma Watson, and Malala Yousafzai at major climate events around the globe, bringing visibility and nuance to the many-layered movements of our modern day. 

She is working on her master’s degree in public health. Her thesis is about the Cure Violence Model and how social movements and epidemiology intertwine. 

Daphne graciously sat down to chat with us about her experiences across the board in communities of activism, healthcare — and her home of West Harlem, New York. 

This interview has been edited for length and clarity. 

Daphne was also the guest editor of our first-ever Disability Edition of the Goodnewspaper, where a version of this article was originally published. Get your own Goodnewspaper by becoming a good news subscriber today.

In Conversation with Daphne Frias

Kamrin Baker, Good Good Good: To begin, for people who don’t know who you are, could you tell us who you are and what your experience is with disability and activism?

Daphne Frias: I am an organizer working at the intersections of environmental justice, disability justice, and gun violence prevention. 

The thread that ties my work together is public health. I’ve been a scholar of public health for the last 11 years or so. I learned about public health when I was in high school, and it completely changed my life. 

It really was like the missing puzzle piece in terms of why things are happening in my community the way that they are and the idea of social determinants of health and how your environment really does seriously impact how your physical and mental health shows up. 

And in my community, in West Harlem, we live in a food desert. We are predisposed to tons of illnesses, like diabetes, heart disease, hypertension, asthma, all of these things. And it just felt like a given. Everybody has one of these things, or all of these things, or a combination. And there was never really an answer as to why. 

And then when I started learning about public health, it really was just like that light bulb moment for me. Like, “wait, we’re not actually doing this to ourselves. There’s a whole system outside of us that is contributing to the way that these things are happening.”

It made me really angry because there’s always this sense of hopelessness where it’s like, “okay, I could be eating right, I could be doing all of the right things, but there’s still this overarching burden that exists.” And then you realize, yeah, because you’re not the one doing it. 

I talk about how a lot in immigrant communities, especially communities of color, there’s this misconception where your voice is not powerful. And because we often come from low socioeconomic backgrounds and are often coming from families that have a mixture of documentation status, we’re taught to just keep our heads down and be grateful for everything that we have. 

My hope is to inspire others — in communities like mine, from identities like mine — to know that their voice is powerful.

I understand not wanting to out yourself because the system hasn’t protected you overall, but at the same time, it’s never going to change if you don’t say something about it. So, that really is the crux of my activism, where my hope is to inspire others — in communities like mine, from identities like mine — to know that their voice is powerful.

I think that there’s also this misconception that activism has to be perfect. That it has to look one certain type of way, and you have to be the most articulate, knowledgeable person ever in order to be an activist. 

But the only thing you really need is your voice and something that you care about. So, my work really just aims to empower folks to know that their voice is their greatest tool for creating change.

KB: Wow. That’s so beautiful. I feel the same way. I think so much of the rage that fuels the causes in the world I care about is that it always comes from this place of, like, you’re just expected to live with the bad. And, no, we don’t have to. 

DF: Right, it’s like “oh well, that’s how it is. Oh well, my great grandparents had to deal with this.” 

No, activism is literally breaking down intergenerational trauma and liberation for our families and for our timelines. Just because it’s happened for generations and generations doesn’t mean that our generation has to continue that.

KB: You spoke a little bit about how public health ties everything together for you. You’ve been an engaged activist for a long time in all of these different areas that overlap. Can you talk a bit about the intersectionality in your work, and how it’s impacted how you view the world? 

DF: I think there is this multitude of systems of oppression that stems from all the different isms: ableism, racism, sexism, homophobia, all of that stuff, that contributes to the reason why certain communities are more disproportionately affected by these issues than others. 

A system long before we even existed decided who was going to be part of the communities with advantages and the communities who were not going to have those advantages. And I don’t think some 400-year-old white man should determine the success of my communities and who gets to who gets to thrive and succeed. 

I also think being a Latina, I’ve had to really grapple with things like racism and colorism. And being Dominican, we share our island with Haiti, and there’s a whole discourse that’s happened over the centuries of our islands where there is this hatred between Dominicans and Haitians, even though we share the same home and the same island. It’s still such a contentious debate. 

My generation has really been the ones who have been breaking down the barriers in those uncomfortable conversations and helping others to embrace our Blackness. Even then, in the language, in Spanish and in English, there are certain connotations and phrases that are used within our everyday vocabulary to have racist and other degrading backgrounds. 

My work is about showing people the systems that exist and showing them this sort of little game of life, and how we can not only win, but we can dismantle the system overall so there's an even playing field for everyone.

So, I’m trying to have these conversations with family, with others, and it’s been really hard because obviously, when you’re trying to change someone’s whole ideology, people get very uncomfortable. They’re like, “this is my culture. Are you trying to erase my culture and erase my identity?” 

And it’s like, no, we’re trying to usher you into the best version of yourself and allow the culture to actually flourish and be beautiful like it should be, without getting weighed down and bogged down by past mistakes from other generations.

My work is about showing people the systems that exist and showing them this sort of little game of life, and how we can not only win, but we can dismantle the system overall so there’s an even playing field for everyone. 

Over the last six or seven years of my work, I’ve really seen that change over time where a lot of young people are getting more involved in this space. 

But there’s also a big shift in intergenerational collaboration where young people are feeling more confident in bringing some of these hard conversations back at home to their parents, to their elders, and saying, “listen, just because something was this way in your generation doesn’t mean that this is how things are going to keep going forward.”

Unless we have those hard conversations, I think that that’s one of the biggest barriers to creating equity overall, because people are so set in their ways. Unless we’re arming people with the right tools to have these conversations, then I think we’re not really going to get anywhere. 

You might also like: What is “intersectional environmentalism” and how can I get involved?

KB: That’s such a valuable insight. You’ve actually experienced a big change in your activism recently because of your cancer diagnosis. Can you tell me more about that journey?

DF: It was a really intense journey. Before I got my diagnosis, I was sick for about two years. It started with fatigue and just general burnout vibes. That’s what I thought it was for a long time because I had been going, going, going for so many years without stopping. 

When I was in Glasgow in 2021 for COP26, that’s when I really started feeling super sick. But I was also doing two weeks of conference, so I obviously wasn’t going to feel great. I came home, I slept it off for a while, and I still didn’t feel well.

I also had been diagnosed with COVID back in March 2020. So, I was in this weird fluctuating area of long COVID-type symptoms. A lot of my symptoms were also similar to the things that I experience on an everyday basis with my disability. So it was really hard to discern something that was abnormal versus something that I was experiencing my whole life. 

It wasn’t until I started getting intense night sweats and fevers for no reason that I knew something was clearly off. When I tried to get a primary care doctor, there were none available in the city, none that would take my insurance. The ones that I could get appointments to were like nine, 10 months out. And I was like, “hey, I can’t wait months to figure out what’s going on with me.”

Then I started using a lot of urgent care and ER medicine, which is something that happens really often, especially in low-income communities. When people can’t access primary care, they use the systems that are meant to be emergent and for very specific instances as the primary care, and then those systems get overloaded and become a whole mess. 

I had gotten some blood work done and everyone was like, “yeah, all the levels looked normal. Everything’s fine.” And this pattern continued for months. I would get labs drawn in different places. Everything was normal. And I said, “okay, yes, my labs look normal, but clearly something is wrong. And it’s not my anxiety or my depression because I’ve been an anxious girlie all my life. I can discern the difference.”

I remember telling one doctor, like, “listen, sir, I am a chronically anxious girl. I know my body and when anxiety is having a little party and when she’s having a little downtime. I can tell the difference. It’s not that.”

You shouldn't have to study healthcare in order to be treated properly and treated with agency by your doctor.

And then because of my experience in healthcare, I know how to read my labs. I know what things mean. And that always is like a point of contention between doctors and myself because I normally don’t tell them first when I’m going in that I’m studying public health and have a background in epidemiology. It isn’t until I feel like I’m not being listened to that I say, “actually, I know what I’m talking about,” and the appointment completely switches up. 

It honestly breaks my heart because you shouldn’t have to study healthcare in order to be treated properly and treated with agency by your doctor. 

Then, finally they’ll offer to run all these other additional tests and do these other extra workups. Like, you should have offered me that in the beginning. It shouldn’t matter whether you think I’m a peer or not for me to be treated with dignity.

And still, we played that game for two years. And then in June of last year [2022], I woke up one day and I had a lump on the side of my neck. And I remember telling my mom, “Mom, I have cancer.”

We did this process where we worked backwards. I had an idea that it was Hodgkins, so I was pretty much going to the doctors to confirm what I knew because, obviously, I couldn’t treat myself. 

I went to urgent care, and then urgent care sent me to the ER. I had this lump and they were like, “yeah, it’s not really anything concerning.” 

I was in excruciating pain at that point. Every night I’d be up until the morning, screaming and crying in pain because where my tumors ended up being were in my spine — and they were radiating all across my body.

After being sent home with opioids from the ER, I came back a few days later because the pain was getting worse and I wasn’t sleeping, and they finally admitted me. A few days later, I had my first CAT scan, and that’s when they saw the first signs of my tumors. 

It was July 1, which for those who don’t know, July 1 is when all residents start their new residencies in New York. So, I was going in for these scans, literally when the new residents had just started, and I could see the fear on their faces when they came to tell me that I had cancer. 

It was such an awkward experience because I had already read the report from the radiologist, and obviously they had read it, too. So they came into the room and asked me, “did you read the report?” And I was like “yeah.” 

And they’re like “okay. We’re so sorry.” No one ever said the word ‘cancer.’ No one ever spoke about my diagnosis or anything like that. 

If someone would have listened to me in the beginning, maybe I wouldn't have been that sick.

But my oncologist is amazing. It was really important for me to have an all-women team because of all the gaslighting I had experienced over the last few years. When I saw her, after my biopsy and CAT scan, she thought I was at Stage 2. 

But after I got a full-body PET scan, I was diagnosed with Stage 4 Hodgkins Lymphoma. They had found over 25 tumors all over my body: in my spleen, in my neck, in my chest, in my bone marrow, in my pelvis, and all through my spine — which is why I was in excruciating pain.

KB: Wow. 

DF: It was really difficult because when you see something like that, it’s validating. But at the same time, if someone would have listened to me in the beginning, maybe I wouldn’t have been that sick, right? 

KB: I’d love to hear about going through that journey already disabled and how that was both an additional challenge and a vehicle for agency through the whole experience. 

DF: Being disabled is also very interesting because I was very comfortable in these hospital settings. The way that I dealt with a lot of the trauma in relation to my cancer was very different from others because my body has always been in a fluctuating state of illness and sickness. So I also really understand the cues that my body is giving me and know how to tap into those. 

It was funny; when I first met my oncologist, I was like, “yeah, I’m going to be the most high-maintenance patient you’ve ever had.” And she was like, “don’t worry, I’ve been doing this for over 25 years.” And then literally the third week in, she was like, “you know what? You were right.”

Literally every chemo side effect under the sun — even the ones that have a 1% chance of becoming a reality — I had every single side effect. And I would be messaging her on our patient portal like, “yeah, so this is happening now. What am I supposed to do about this?”

But she also really gave me a lot of agency over my care. I am a planner girl. I am a binder girl. I have binders for everything. So when I got diagnosed, I made a cancer binder and I printed out these guidelines, written in plain English — no medical jargon — for my mom and my sister, so they could know about my care and what to expect. 

In true Daphne fashion, I also became an activist during my cancer journey.

I was also dedicated to getting every grant and every bit of free money that was out there. Like, getting healthy and getting chemo is one of the most expensive things you can go through, especially in America. I had all of that in my binder too, and that really helped me. 

In true Daphne fashion, I also became an activist during my cancer journey, and I connected with a lot of other patients that were on my floor. Because I had that background of dealing with disability and chronic illness, I knew that becoming disabled is something that’s a radical, life-changing thing.  From one day to the next, your body is one way and then your body is a completely different way. And that’s a very jarring experience. 

So a lot of what I did was connecting with them to help them embrace their body at all different stages of the chemo experience, and giving dignity and agency to this whole process. At the end of my treatment, I donated a bell to my cancer unit, because it was a smaller unit and didn’t have a bell associated with it.

I am that girl that needs to celebrate. So I will be ringing my bell when I finish treatment. I will be ringing my bell for everybody to hear. And it has to be nice and crisp, like no janky bell in sight. So I ordered a bell and I had it engraved with our unit name. 

Well, and then actually, I think it was like three chemos away from finishing, and our infusion unit flooded.

KB: Oh my god, you can’t catch a break. 

DF: Yeah, over the Christmas weekend, the pipes burst and flooded the whole unit. So we were in this other smaller section, we actually just got to reopen our unit recently and I got to hang up the bell here and ring it. It was so amazing. 

I also got to work with one of the fellows who was part of my medical team, and she wanted to get some grants for some new cancer research. I was her patient advocate, and I wrote a bunch of letters for her grant process, and she got both of them. 

Overall, it has just been one of the most difficult, but also really rewarding processes, because I got to use my advocacy to impact this community that’s so important to me now. But I also learned so much about myself and my body. 

I think people struggle to understand when I say I wouldn’t change this experience for anything. Yes, facing your own mortality is very, very scary and difficult. And at 25, I didn’t think I’d be making these life-altering decisions, but it has really just given me the autonomy to listen to myself and listen to my body because I was always really bad at that, especially in the activism space.

I always felt like I had to always be there showing up for every protest, rally, march, etc. And then when I couldn’t, I had an identity crisis. Like, what is my activism if I can’t do that stuff? 

That’s when I really turned to social media and started talking about my journey and my experiences and still keeping up with activism in that way. 

I’ve always told people there wasn’t one right way to be an activist, but in my own head, I always had this picture that it had to be a certain way for me. And I had to really learn how to take my own advice when I got sick.

I've always told people there wasn't one right way to be an activist, but then I had to really learn how to take my own advice when I got sick."

KB: Wow, what a journey you’ve taken me on here. I think it’s so real, and what you just said, especially when you work in the climate space, everything just feels so urgent. 

You want to show up and do everything you possibly can, but I think there’s a fine line between doing everything you can and doing everything you should. I think a lot of people would identify with that. 

DF: I think a lot of my healing process in terms of the mental toll has been grappling with the anger I felt against the activism space for putting such a heavy burden on young people. For a long time after I got better, I’m like, “did I ignore the signs for so long because I was so committed to doing this work?” 

And it really made me mourn this aspect of activism where there should be a sense of community, but oftentimes it doesn’t feel that way. It feels like you’re just doing this work by yourself. 

We don’t want to be people’s inspiration. If you feel inspired, we want you to do something about it. 

Plus, thinking about the climate crisis, and all these other additional factors of my environment that definitely contributed to my health and my cancer, it’s very interesting to be someone who’s fighting for the climate and then be affected by the climate as well.

Experiences like mine are only going to proliferate the more that we don't take action on the climate crisis.

I always talk about how we all are on the front lines of the climate crisis because we live on this planet and some communities feel those effects more than others. But then to be faced with a very present reality of that was a very jarring experience. 

And I know that experiences like mine are only going to proliferate the more that we don’t take action on the climate crisis. So it has made it even that much more personal for me. 

But it has definitely been a lot of grieving and a lot of working through those emotions to figure out where my place is back in this movement. I would cry during my treatment, being like, “Mom, no one will ever want to work with me again.” 

A month within activism spaces feels like a year. Things happen so quickly, and to be almost out of the movement for an entire year felt like a decade. It was such a massive fear of mine that I wouldn’t be able to get back into the movement because it would have passed me by.

And as much thought, platform, and privilege as I’ve been given, I still have to work three times, four times, as hard being a disabled activist because our voices still are not being equitably included in spaces. I felt like I would have to start from square one getting back into this work after my treatment. 

KB: Right, you’re feeling this totally existential thing, like, what’s my next act after this?

DF: And that’s the thing where activism promotes the sense of urgency that if you don’t know what the next step is, you feel really lost. Not to mention that gaining a platform, people look to you for answers. And a lot of the times during that process, I had no answers. I was just like, I’m doing my best. And to be that vulnerable is really scary.

KB: And I’m sure you experienced so many more insights as you think through those questions, like “where is the space for me here? What additional accommodations do I need to show up fully? How do I do that? How do the people around me do that?”

A big theme that has come up in our conversations is how disability can impact people at literally any point in their lives, and that the disability justice movement isn’t necessarily just a movement for people with disabilities. Can you elaborate on that?

DF: I talk about this a lot, especially within the climate space. The climate crisis is a disabling event. 

The more that our planet deteriorates from us not taking action, the more people are going to lose vital things that they need to thrive and succeed, which will then push their bodies to the brink because they’re having to adapt to these very unsafe and unpredictable situations. 

If you’re losing your home and you don’t have a clean source of water, that creates all sorts of health issues and social, emotional issues. And then I think obviously the biggest example was during the start of the pandemic and how many folks who survived the pandemic were dealing with new long-term disabilities. 

It was a really interesting pinnacle where there were so many new folks joining the disability community — and we always welcome people — but it was also hard because it was only then that people were listening to us. 

Like, we’ve been here the whole time. It shouldn’t take the influx of previously able-bodied people to come into this movement for people to start paying attention.

And I think a lot of that comes from the fact that just because you attain a disability doesn’t mean that your ableism evaporates, right? A lot of these newcomers into the community still had to dismantle a lot of their internalized ableism. 

They were coming into the space with a lot of preconceived notions about disability and also grappling with the fact that suddenly the world that they were existing in was very ableist against them now, as well. So that’s a culture shock from a lot of different avenues. 

I think what’s so stigmatizing is that folks know that the minute you become disabled, the system doesn’t see you anymore. I firmly believe that it’s not necessarily the physical implications of what disability means, but that erasure as a person and as a community is very foreign to a lot of people.

And if you’re used to living in a society that supports you, and then you go into a community where that no longer exists, that is a very radical shift, right? 

We need cross-ability partnership and amplification because yes, disability could happen to you at any moment of your life, but also because able-bodied people already benefit from disability inclusion and universal design in ways that most people don’t even realize. 

I see it all the time. Mothers with their strollers utilizing elevators. And I cannot tell you how many folks abuse push-buttons for doors just because they don’t want to open doors. And that’s okay. But it should make you realize like, “wow, this door is actually a lot heavier than I thought.”

The disability community is a community on the margins, but we don't exist in marginalized numbers.

Things like that are very vital. And I also think about how accessibility is not just about physical access, it’s about allowing you to show up in all of your identities, as well. So that includes language access, that includes gender-affirming care; that is access as well. I think folks need to broaden their idea of what access means and what access looks like. 

Yes, those with physical disabilities and apparent disabilities are still more marginalized than others. But the more that we see access as a universal platform for equality, I think the further we’ll go into actually achieving it. 

Not to mention, the disability community is a community on the margins, but we don’t exist in marginalized numbers. There are a billion of us all over the world. We are 15% of the population. And whenever I tell people that, they’re like, “okay, why don’t I see more disabled people?” 

Because the system doesn’t want us to be seen. Just because you cannot see us and hear doesn’t mean that we aren’t being loud. It doesn’t mean that we aren’t here. There is a systematic reason why certain communities are more visible than others. If you want us to be visible, you actually have to implement the access for us to actually be there.

We’d rather see organizations trying than excluding us completely. I think there’s this idea that accessibility has to be perfect in order for it to be functional. And a lot of times, we just want to be able to be there and show up.

This reminded me of this one experience that happened to me a couple of months ago. My friend had an accident and had to get her leg amputated, and now she uses a wheelchair. I remember before her amputation, she was basically like, “can you teach me what it’s like to be disabled?” 

We went around in her neighborhood and I was like, “okay, go on your daily path, however many stores you go to every single day and look at how many of them you’ll still be able to access in your wheelchair.” And out of 22 stores that we went to, like laundromat, coffee, breakfast, all of those things, everyday stuff, she was unable to access one. 

She was like, “I never noticed that before because that wasn’t mine. But now that it is, this whole world is opened up before my eyes.”

Honestly, that’s like my biggest piece of advice, try to navigate the world looking at it in a way that doesn’t just function for you. And the more that we start to do that, I think the more that we will build solidarity.

KB: That’s amazing. You mentioned your experience studying public health. I’d love to talk more about that and how disability intersects with that experience, as well.

DF: The program that I actually learned about public health is called the Lang Youth Medical Program. It’s a program partnered with New York Presbyterian Hospital, which is the learning hospital connected to Columbia University. And this program was for youth from sixth to twelfth grade. It’s a long commitment. 

You get taught by Columbia med students, interns, or different folks within the Columbia ecosystem. And you basically go to a mini medical school. We were actually able to do rounds with some of the doctors and meet patients as part of our clinical studies. 

When I had these experiences, it made me realize how obsessed I am with being with patients and being with them in their most vulnerable moments, being like, “we’re going to get you through this.” My whole thing is like seeing a patient beyond their chart and beyond just their diagnoses. 

In my program, we also learned about this discipline called narrative medicine, which is the study of using art and other forms of self-expression to understand the patient experience. So you use creative writing, art, storytelling, all different forms of expression. And a part of a patient’s chart is actually all of those examples and things like that. You get to understand the patient as a whole person, understand their story, understand their narrative, and actually use that to inform their treatment. 

I’m also getting my master’s degree in public health. My master’s really focuses on this thing called the Cure Violence Model, which is this idea that you can use epidemiology to understand how social justice practices proliferate in communities and across the world. 

This model was specifically attributed to gun violence, but then has been proliferated to other social justice issues. So we look at, what are the pressure points that cause an epidemic to be created? And then how can we use epidemiology to mitigate those pressure points and make it so that the community is healing itself? 

I think if more folks understood that model where a community can take care of itself, then we can also use science to understand why things happen the way they happen.

KB: I love that conversation around access and greater understanding. Is there anything else you think is important to add?

DF: I think there’s also this misconception that the bare minimum should be enough for disabled people. I want to thrive and experience joy — not just exist in a little bubble or a little box.

That doesn’t work for me. The system has to change for me. I don’t have to change for the system. And I wish people understood that there’s also so much to learn from the disability community. We have had to exist and thrive for years and years in a society that isn’t made to survive. 

I mean, President Roosevelt, he had polio and he used a wheelchair and he would literally hide away in the White House and not conduct press conferences because it was worse for him to be seen in his wheelchair than for him to be out there being a functioning President. And that stigma is still very real and still exists. 

But I also think that there isn’t enough out there surrounding disabled joy. Because we’ve had so little, we’ve been able to find joy in literally anything and everywhere amongst ourselves. And I wish more people could tap into that disabled joy. And I think that that’s why using my platform — so more people can live full, joyful lives. 

Learn more about Daphne and her work.

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October 1, 2023 3:00 AM
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