Ana Maria
De La Rosa
Boston, Massachusetts
“And what I think that “vulnerable” does is it puts the emphasis on the person and not on the system that’s failing them. People aren’t vulnerable; systems just fail them. I reject that term.”
Ryan Roach: What is your name and how do you identify?
Ana Maria De La Rosa: My name is Ana Maria De La Rosa. I use she/her pronouns and I identify as Afro Latina, Afro LatinX or Afro Taíno.
RR: What has your experience been like during the pandemic?
AMDLR: [Sighs]. Oh, so I got sick at the end of March. It was right before everything started to shut down and when people were finally paying attention, or it was brought to attention that there was a virus going around. So, I had the misfortunate experience of trying to navigate the hospital system and this virus at peak hysteria, fear, and lack of resources.
RR: What was it like to feel like you had the virus, but no one would essentially diagnose you, or let you into these hospital spaces to talk about it?
AMDLR: Well, the first thing: It was scary, right? I’m watching the news like everybody else, and it was before people were being put into separate categories. Like, you know, some people get the virus and bounce back some people get the virus and get lung COVID results, and some people don’t make it. So at the time, I had one ER doctor tell me, “You can’t come back here unless you’re coughing up blood, or you’re actually dying,” ... and I had this thought of, “Do we know that I’m actually not dying right now?”
So, being really scared on top of feeling incredibly dismissed and not cared for. I think I ended up having to go to the ER three separate times because my symptoms had gotten so bad, and my oxygen levels were so low, and my heart was racing so fast for days at a time. And I think the third time that I got sent home, Jess and I kind of looked at each other and said, like, “Oh, they’re gonna let me die. Like they’re gonna let me die at home... like we can’t keep trying to come back here.”
RR: [Sighs]. Ugh I’m sorry you had to go through all of that, that is ... [sighs] this medical system. How has your health been since that time period and what have the residual effects been?
AMDLR: I’m definitely one of the long COVID patients, right? So, what has it been now, eight months? I now have an asthma diagnosis that I did not have before. I have to take a preventative inhaler twice a day and asthma medication every single day. Before March, I never, ever had any kind of lung issues, I had the occasional seasonal allergy and would sometimes take Jess’s inhaler, but that was it. So, to go from that to now it being something that I have to manage every single day, [sighs] it’s overwhelming. And you play the trick in your head of like, “Is this forever or just a little bit longer?” Especially someone who had other health conditions. Having this idea that, “Oh my God, is this something else that I am now going to have to figure out how to manage for the rest of my life?” That’s too big of a thought, so I try to take it day by day. But I definitely have particular, long-term lung effects as of now.
RR: What has your day-to-day been like during the pandemic?
AMDLR: I had about six months where I could barely get out of bed or do anything. I went from being someone who considered themselves pretty active – like I went to spin class a couple days a week and had a pretty active social life, too. I had to take official time off work – disability time off work – because I could barely sit up long enough to get things done even on a computer. I am just getting to the point where I can be “productive” (however I want to define it), a couple days a week.
RR: Do you have any accommodations, supports, or outside needs that were interrupted by the pandemic? And, if so, what did that look like for you?
AMDLR: [Sighs]. So I have a partner, Jess, who has had lifelong chronic asthma and has had to be my primary caretaker, and the person who has to leave the house to do anything. So like in other scenarios, people are kind of able to split up the grocery shopping or having to run errands, or even being able to drive themselves to doctors’ appointments. So there’s this disproportionate ask of my partner who has her own disability and lung and health issues in the middle of a health pandemic virus that affects the lungs, and she’s the only person that runs errands, leaves the house, drives me to every appointment and puts herself at additional risk because we can’t split up any of the tasks. Because my immune system is so incredibly compromised from having had the virus, anytime I’ve attempted to be the person who takes on one of the household responsibilities outside of this house, I am laid up in bed and sick for days at a time.
RR: What has your experience been like accessing information about COVID-19 and the pandemic?
AMDLR: Oh my god, especially in the beginning, it was so scary and frustrating. I think I must have read every free medical journal I could get my hands on with a sheer hope of surviving. Just trying to figure out and reading every blog and all of these COVID Facebook groups. Truly trying to piece together what has been supportive to other people that I might be able to try so that I can give my body a fighting chance to recover and to heal from this, right? So in some ways, I feel like I have consumed just such a [laughs] large amount of information and then have had to learn to decipher what is for me and what isn’t. And while doing that, continuously running into all the reports about how people of color are disproportionately dying from this and how people of color are the ones, particularly Black and Latinx folx and Native Americans, then West Pacific Islanders, are the folx who are dying, right? And who are holding this disease much longer even after the virus clears. And so, to be consistently bombarded with that message while I’m trying to decipher what news I need to pay attention to, because what might have a nugget of wisdom that I can apply that might be the thing that helps me get better.
RR: During the pandemic, the government and media have deemed the chronically ill, disabled, and immunocompromised communities as “vulnerable.” What are your thoughts on the terminology of “vulnerable”?
AMDLR: Well, I hate that word. [Laughs]. It’s maddening, right? Because it’s not that a particular group is more vulnerable, right? It’s that they’re not protected. They’re not taken care of. It’s that no intentionality has gone into, “How do we step up and make it so that folx who are already constantly interacting with a medical care system that does not listen to them, ignores them, and causes them harm are not further harmed in this particular moment by the virus?” And what I think that “vulnerable” does is it puts the emphasis on the person and not on the system that’s failing them. People aren’t vulnerable; systems just fail them. I reject that term.
RR: Over the past few months, media correspondents and politicians have continuously talked about “vulnerable” populations, yet rarely invite anyone from these communities to represent themselves or their communities. Why do you think that is?
AMDLR: I mean, I think part of the answer is inherent in the fact that this is a group of people you’re willing to sacrifice. I think at the beginning there were these politicians who were making comments along the lines of like, “Sacrifice your grandparents,” or, “The elderly should be willing to die for the economy.” And I think that same level of horrific logic applies to disabled folx – the people that they think are “vulnerable” – and to people of color. I think there has always been a baseline of accepted people, right? That we are willing to sacrifice who we consider – and by “we”, I mean this project, the United States of America – considers disposable. So, I think what we’re witnessing right now is what it looks like when they’re extremely open and honest [laughs] about it, right? Like there have always been their disposables. I just think we’re really witnessing. So of course they’re not going to invite anyone from the communities that they think and consider “throw-away” people like homeless folx. We have very clear understandings of the people in society that are absolutely their “throw-away” people. In this moment, they have just happened to add the elderly and are being less quiet about folx with disabilities.
RR: During the pandemic, society has been able to accommodate the general public with accommodations, like work from home, that have been asked for previously by the disabled, chronically ill, immunocompromised, and neurodiverse communities, yet these communities were typically denied. Why do you think society has been able to accommodate the general public when these accommodations have been denied previously?
AMDLR: Because like everything else in this country, nothing changes till it affects cis white people, right?
I can think of examples of my own life where work from home accommodations have been requested and denied. I know so many other people who have been asking for so many of the supports that now companies and organizations are willing to do and make. It’s truly because the baseline of who needs it now has fundamentally shifted. When “good, nice white people” are the ones that are in trouble and need something, then all of a sudden there is this level of awareness. We’ve seen it play out repeatedly in social justice movements. We’ve seen it play out with the HIV and AIDS movement. It took like a nice white kid, Ryan White, getting sick. We’ve seen this mentality filtered through all types of civil rights movements. So now I think that this is a straight reflection of that. Things that oppressed folx asked for repeatedly do not become mainstream and are not universally accepted till it affects a “nice white person.”
RR: Moving forward, how would you like to see the government and society start responding to the COVID-19 pandemic?
AMDLR: Oh God. [Laughs]. How would I like to see? The thing is that other places in the world are figuring it out, and so what I would like to see first and foremost, is somebody at the government level willing to do some of the deep work and learning from other countries, right? And not just Euopean countries. There’re some really great examples of how folx are dealing with the pandemic on the continent of Africa and Asian folx. Taiwan has some really interesting and great public health measures that they’re taking into account and have had. I think they’re going on like, I don’t want to say the exact number, but they have definitely had a period of time with no new infections. So I think it would be really powerful part of what the next step was is that we look to other countries, but particularly other countries led by people of color, and said, like, “How can we learn here?”
I feel like I see all of this deference towards the European countries or like Australia and, look – they’ve done something we haven’t done, but it completely ignores the rest of the world and all of these like countries that are primarily made up of and led by people of color that are also doing many innovative things. So anyways, that feels like a good first step.
RR: Yeah, I think that’s absolutely the case. I think that one of those countries is Vietnam, for example, which has a fraction of the GDP of Australia and New Zealand, yet they’ve been able to contain their cases to such a low level, and no one is really talking about it or giving them the same shine or gratitude or just upholding them like the U.S. media has been upholding Australia and New Zealand.
AMDLR: Yeah! And I want to learn from them. “How did y’all do this?” “What are you doing?” Right? Like, all of these countries aren’t doing the same exact thing. So of course, a great first step would be like, “Let’s analyze what people are doing that’s working and see what it feels like might work here.”
RR: Yeah, I think that would be the ideal situation.
AMDLR: Yeah. I don’t know if we’ll get it from any administration. But it’s what we deserve, right?
RR: In addition to the pandemic, the United States has experienced uprisings across the country in response to the murders of George Floyd and Breonna Taylor by police. Uprisings in physical spaces are not always accessible to all folx. Have you been involved at all with the uprisings over the past few months? And, if so, what has that looked like for you?
AMDLR: Yeah, this is such an important question. So I was, and during the time, I was barely able to do a whole lot physically every single day. One of the things that Jess and I did was that we collected some donations and we donated ourselves. We bought water, and we went down to some of the protests happening here in Boston, and we put the water on our car, and we stayed in the car, and we offered up water. That kind of evolved into goodie bags of, like, granola bars and face masks and hand sanitizer and a bottle of water and a couple other things that folx might need. We handed those out, and we handed them out in a socially distant way. It allowed me to feel like I could still participate and not have to get out of the car and not have to interact physically with a ton of people. So that felt really important, and I’m glad that we were able to figure that out – that we had the privilege of having a car and having friends that were willing to donate. Same thing for friends that weren’t physically able to make it down there who were willing to donate supplies and that we were able to put these little bags together for folx.
RR: Why is it important to you to share your story?
AMDLR: [Breathes deeply, laughs]. You know, I think about different times in my life where I’ve been invited into sharing my story of grief, my story of resilience, and this feels different. I feel like I have held this story maybe a little bit closer to myself. [Sighs]. Which is hard because I know so many other people who, in witnessing my story, have reached out and said like, “I am more willing to wear a mask.” Or when somebody in their family has gotten sick, they reach out because of my herbalism background and some of the things that I’ve posted about how I’ve been able to, like, support my body with herbs. I get all these people that reach out like, “Will you talk to my cousin?” “Will you talk to my friend?” So very clearly seeing that there is this role that sharing plays, right? That it can support the community.
But I’m also feeling so tired [laughs] and just feeling like, in some ways, part of what I’m working through is this resentment of having yet another thing to work through. In the beginning, at one point when doctors weren’t willing to talk to me, or nobody believed I had the virus. So I want to point out that I tested negative for it but had absolutely all of the symptoms, and just now, after a lung specialist has seen me eight months later, he says, “Oh, I have no doubt you had COVID.” It took eight months for somebody in a medical profession to finally look at me and look at what had happened to my body and say like, “Oh, I believe you.”
But in the beginning, like at one point, Jess looked over at me, and I looked at her and I said, “I’m fat, and I’m Black, and I have a chronic illness, right? Like, these people are going to let me die.” And I already carry so many stories and give so much of myself with those other intersecting identities that the idea of having one more thing that I have to process with folx and become vulnerable about and open up about has just felt so exhausting. And yet, here’s an invitation, here’s an invitation from you, and the invitations keep coming in where people are saying like, “Your story is helpful, your story is supportive, please share.” And so, I think I’m answering those invitations and also recognizing and giving space for the particular way that this illness has brought me grief.