Vivian Auren
Baltimore, Maryland
Ryan Roach: What has your experience been like during the pandemic?
Vivian Auren: It’s honestly been pretty chaotic. I had unstable housing for a while, and I actually just moved into this apartment. That was kind of a process, as I have quite low immunity, confirmed by my health care provider. Well, that was the wrong word – it’s that my immune system is working overtime actually. It’s been very jarring to see young and otherwise healthy people, or peers I don’t know or do know, fall really, seriously ill. Almost always they are hospitalized.
My immune system often fails me. I have had chronically active mono, which jump-started my chronic fatigue syndrome. Now on top of that, I’ve had chronic tonsillitis or throat infections, which is common with CFS15, and I have very low endurance. So given that this virus is respiratory, it’s definitely raised my anxiety.
Despite all of that, though, I have nothing but the online community to thank. When I was looking for housing, I started a Go Fund Me, and I raised enough money for a month of rent, which I am very, very, very thankful for every day. So both positive and negative has been my experience, but definitely very stressful.
RR: What has your day-to-day life been like during the pandemic?
VA: Given that I have complex immunity issues, I’m not comfortable working outside or in a service job. I’m aware that it’s a massive privilege, and that’s definitely something that I’m very grateful that I can choose to not do. I’m in a treatment program currently from 10 am to 4 pm. I also have an internship as a social media manager at a nonprofit. So typically, I wake up, I have breakfast, and then my treatment . And then at 5 pm, I do internship things for a few hours like
social media posts. I don’t have time for much else. I have to go to sleep right at 10 or 11 pm, because I have a sleep disorder. I’m narcoleptic, so I physically cannot be productive if I don’t get ten hours of sleep, or at least around that. So I have to time manage very heavily.
I would say it’s definitely hard to juggle treatment, but it’s definitely harder to juggle treatment and my career. But I’ve been very adamant about not letting my career and goals go, even as a disabled person. For me, I don’t know any more than a handful of people in college with ME or chronic fatigue syndrome. I’ve gotten messages before about how people with ME, most of whom are bed-bound, talk to me about how it’s really important for them to see someone achieving a career goal with ME or CFS. So I guess in my day-to-day life, I keep that in mind, and I acknowledge that I have my own goals, so I work towards that.
RR: How has this time period impacted your work as an activist and an artist?
VA: It’s really pushed me to look deeply into both my internalized ableism and the ableism of other people. I think eugenics have been incredibly strong during the Trump administration, and it really forces you to look at yourself as a marginalized person. And I am by no means the most marginalized person – like, I’m a light-skinned Asian person. I do not face medical apartheid19 like 99% of the time. I would say that it’s really just been helpful for me to learn more about things like medical apartheid, things like the effects of colonialism, Black activists, Black disabled activists. It’s been very important for me to de-center myself, as much as my struggles are valid. It’s still important to remember to uplift those who are struggling the most.
RR: In this time period there has been a lot of information coming from a lot of different angles about COVID-19, what has your experience been accessing information about COVID-19?
VA: It’s weird because, as a chronically ill or disabled person, I feel like all of us have this kind of little information bank already stored about what is a window period, what is an infection, what does this blood test result mean. Just because we’ve had so many tests and we’ve had so much experience in the hospital world or the medical world. So I already have that. So I do look at the CDC website, or even just studies or trials. I already kind of have the literacy to know that. It gets very complicated when you go to media that’s not just the NHS, ‘cause then it is biased. I feel like I’m pretty good at calling bullshit when I see bias in an article like at a news source, but it definitely can get you. I’d say my access to it has been okay. That’s been helpful.
RR: What are your thoughts on how the government and the media have been responding to these so-called “vulnerable” populations?
VA: Like shit. Well, I think we can all agree, like shit. So, my entire feed, like my instagram feed which is the social media that I use, has always been advocacy for marginalized people. I’m really thankful for the online environment that I’m in, and that I’ve made it what it is. With that comes a lot of pointing out bullshit of how disabled people are really being treated in a pandemic. We’re seen as disposable. We get thrown with bullshit like, “We accommodate disabled people under the ADA,” like, “We’re doing the bare minimum,” but the reality is that hospitals are at capacity and are forced to use eugenics to say, “Well, you have less of a chance at living – you’re not worthy of having treatment,” and that’s something that a lot of activists have talked about. Eugenics not only in disabled people, but people of color, Black people, Indigenous people, Native American people. It doesn’t apply just to disabled people, and it especially applies if you’re disabled and another identity. It’s just a really hard time to be marginalized.
RR: In response to the pandemic, many businesses and universities have been able to accommodate the general public in ways that have never been seen before on such a large scale. Many of these accommodations, like working from home and tele-health, have been denied in the past to people who are members of the disability, chronically ill, immunocompromised and neurodiverse communities. Why do you think society has been able adjust so quickly to this situation when society has typically denied these accommodations before?
VA: People see disabled people as very disposable. If we’re not disposable, if we get any sort of sympathy or empathy, it’s to be some, like, “inspirational story” for an able-bodied person’s benefit – to feel good. I think this pandemic has forced people to confront what it’s really like to be immunocompromised or disabled, thus making accommodations, usually in the name of allism, but also for their own comfort. These able-bodied people still don’t have to deal with eugenics, but it’s a very real and shocking reality to most people who aren’t disabled or chronically ill.
RR: As cases of COVID-19 continue to surge around the United States and the world, how would you like to see society and the government respond to the COVID-19 pandemic?
VA: I would like to see the government hold big pharmaceutical companies accountable – specifically Gilead regarding the possibility of not a vaccine, but a drug that would lessen the time of hospitalization. I want them to not just take PPE away from hospitals and not tell them why. There’s a lot of demands that I would obviously want, but at least globally, the pharmaceutical company thing is very important to me. And then, kind of locally and interpersonally, I would want healthcare workers to be supported and also, at the same time, be held accountable if they use eugenics, or use medical apartheid, or are not doing their job. At the same time, I recognize it’s a very stressful and just an overwhelming job to be in currently.
We need an action plan – a healthcare action plan. And obviously financial redistribution from billionaires. But that’s a tall order, so...