Rachel
Schmidtke
Alexandria, Virginia
“I tend to only read sources that I trust. I feel like there’s a lot of misinformation out there – a lot of people getting sources off of, like, I don’t know, Facebook, and I don’t necessarily trust those.”
Ryan Roach: What has your experience been like during the pandemic?
Rachel Schmidtke: It’s been hard, I have to say. My partner is not immunocompromised, and he’s been very cautious for my sake. But just having to take extra precautions and always be sort of vocal, advocating for needing people to meet me outside if I see them. I’m always wearing a mask. It’s been an interesting practice in seeing different people’s level of comfort during the pandemic. And obviously I have a much lower tolerance for what I’ll accept in terms of abiding by CDC guidelines. It’s been a little challenging trying to navigate this in a way that still allows me to not lose my mind and be social and see people, but also make my health my first priority.
RR: What have those experiences been like navigating those chronic conditions with your partner and with your community?
RS: They’ve been overall good, and I think people are understanding when I’m clear about what I need. So, like with my partner, at the very beginning of the pandemic, when we figured out that people who had lupus, like me, were at a higher risk for having complications if they contracted COVID, we both sat down and were able to have a good conversation about what was our tolerance level for certain things. So, for example, he’s gone out of town a couple times for work. And we know that when he goes, he comes back, and we wear a mask, and he gets tested, and we sleep in different parts of the house and kind of navigate in that way. I think from the community, that’s been a little more challenging. Because, again, every person has a different expectation or way that they’re navigating this. So I think having to over-communicate constantly, like, “I can’t meet you inside,” like, “No, I don’t want to see more than one or two people at a time.” Things like that, you know, it can be a little bit tiring.
RR: What has your experience been like coping during the pandemic?
RS: You know, I think therapy is a blessing. I have a great therapist that I see regularly who helps me deal. I have anxiety, and I think there’s already anxiety of a life-threatening disease out there, and then anxiety that comes with sitting inside all the time. So I think it’s really good to be intentional about taking care of yourself and maintaining good mental health, but that can be hard to go at it alone. So thankfully, my therapist has been really helpful to help me cope with that. And my partner’s really supportive, so that’s good. And then my mom, also, is high-risk, so I have another person who is sort of going through it with me, which has been nice because she also understands the feeling of feeling very restricted right now.
RR: What has your experience been like accessing information about COVID-19 and the pandemic?
RS: I tend to only read sources that I trust. I feel like there’s a lot of misinformation out there – a lot of people getting sources off of, like, I don’t know, Facebook, and I don’t necessarily trust those. So if it’s the New York Times or Washington Post or something, I’ll tend to read that. I feel like it’s been a little discouraging seeing the CDC guidelines changing, and a feeling of definitely mistrust of anything that’s coming from the Federal Government. The President has obviously been downplaying the seriousness of this pandemic since the beginning, so I’m not getting any information from the White House. I’m sticking to journalistic outlets that I trust, and speaking with my rheumatologist, who I see every three months, and any other doctor that I have appointments with. They’re the people – I’ll follow what they say.
RR: As someone who works in immigration and refugee work, how has this time period impacted the work that you’re doing and the communities you’re working in?
RS: [Sighs]. It’s been pretty devastating. For me, again, I’m really lucky that I get to work from home and that I still have a job. But, especially for immigrants and refugees, there’s so many other issues that they’re dealing with. One I think that is particularly difficult to handle is lack of a regular documented status. So even if a person has fled violence or could qualify for refugee status and that protection that the law affords you, not everyone has had the opportunity to seek that or be given it. So for those people, access to health care is virtually non-existent – access to a type of employment that pays a living wage that allows people to take time off if they’re sick. All those extra precautions and extra safety nets that people like me get to have, those aren’t afforded to people who are immigrants and refugees and displaced people, both in this country and all over the world. I work mostly in Latin America, and we’re finding that a lot of people, like in Central America and Venezuela, are living these devastating consequences when economies are collapsing, and people don’t have access to a well-paying job or access to any sort of social support. So it’s a really challenging time, especially with borders being closed. People who desperately need to leave can’t leave their countries.
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”?
RS: I think it’s complicated. I tend to not love that term. One, because I think it makes it seem like people from those communities are not agents of their own change. I think most of the time when we see politics being pushed forward or policies that are for and from people who are affected by a certain thing, it’s because there’s a whole coalition of people working very hard to get those policies and laws and things changed. So to classify them as only “vulnerable” I think is a problem, but I think we also need to recognize as a society that there’s certain groups of people in this country – particularly people who are living with chronic illnesses or some form of disability and things like that – they are often pushed to the sidelines, and we are placing them in a vulnerable situation. It’s not that they’re inherently vulnerable but by being marginalized from society in so many ways they’re in a position of vulnerability. And I think that’s something that needs to be addressed. So it’s a tricky word usage. I feel like there’s probably better terminology that can be used besides just using a blanket term of “vulnerable.”
RR: What are your thoughts on how the government and the media have been treating these populations they have deemed “vulnerable”?
RS: Uh, terrible. I mean, for me, again, I’m fairly privileged and lucky, even in my immunocompromised status. And even I feel like the government is – excuse my French – fucking me over a little bit. I take hydroxychloroquine every day, and I’m hearing from the government that that’s the miracle pill, and then people started running the pharmacies out of a pill that I need to keep my illness under control. I don’t feel like there’s really good access to it. Thankfully I have insurance, but if I didn’t, I feel like I would be in a really bad situation where I wouldn’t be able to manage my disease. I would probably be much more advanced than what I am right now. So I’m just thankful that, again, I have protections, and because of my job, not because of what the government is doing.
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?
RS: I mean, I think it’s because there’s not enough people of those populations that are in government. So if we had more representation, then it wouldn’t be a question of inviting people to come and be at the table. They’d already be there. So I think that’s a huge issue, and I think, again, I’m not necessarily representative of everyone in this community, so I don’t want to speak for everyone, but I do think that there’s so many barriers to accessing that type of power. And I see that in my work with refugees for example, where people only want to listen to your story when it’s convenient to them. And if you don’t have the money or don’t have an ear to a certain person who has power, then your story doesn’t get listened to. So I think that often happens with people in society who are not given access to those halls of power, that their voices get left out. And they’re only listened to when there’s either a critical mass that’s built, or they fought hard enough to finally get someone to care that’s not of their community.
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?
RS: I think it comes down to who is being affected now. I think cis, white men – people who generally have a lot of power in society – they now need those accommodations to be able to perform the functions in society that they’ve been performing. So now that those people who generally have access to a voice and who have power are affected, I think we’re able to mobilize resources very quickly. And we see that in so many different aspects of society. But, you know, the resources are usually there, at least in my experience. It’s just what do we deem important or who do we deem important enough to allocate those resources to. I’ve heard this from many people who needed specific accommodations – like being able to work from home or having telehealth medicine visits and things like that in the past – and they feel very frustrated that it’s only now that they’re able to do this. And it’s so easy to have it done, and those people just didn’t want to do it because they didn’t care. So I think it’s just a lack of caring, honestly.
RR: Moving forward, how would you like to see the government and society start responding to the COVID-19 pandemic?
RS: I would really love a mask mandate, and better access to testing and results quicker. I mean, I’ve gotten tested once, but my partner’s been tested a few times, and you know, a three to four-day testing window is not acceptable because it completely refutes the effectiveness of the test if it takes that long. So I’d really like to see from the Federal Government a more proactive stance and actually mandating certain things to get done. And I would really like the Federal Government to start really – you know, they talk about when a vaccine comes out that the highest risk populations are going to get them first and things like that. But I would really like to see a little more attention paid to people who are high-risk, particularly because, for someone like me, for example, I don’t think you would even know that I had an autoimmune disorder or disease unless I said something. So if I were working as an essential worker somewhere, I’d have to disclose my health status to be able to say that I need to stay home because I’m at higher risk, and my employer might not care. So I think I would really like to see the Federal Government building in some protections for people, particularly essential workers, who have chronic illnesses or who have a disability, who are immunocompromised or neurodivergent in some way. I think we need to protect the people in society who are going to be most impacted by the virus, and I think that’s the only way we’ll be a healthy society moving forward – is if the most affected, the people who are going to get the sickest, and who also have to work, are able to stay home and take care of their families and keep themselves healthy. Because if they’re not healthy – if we’re not healthy – then no one else will be.
RR: Why is it important for you to share your story?
RS: I think it’s important because we have this saying in Spanish – I’m just going to say it, and I’ll translate it – but it’s, “Cada cabeza es un mundo,” so it’s like, “Every head is a world,” which doesn’t really make sense, but it’s basically saying that every person has a journey and a story that they’re going through. And I think when we think of people who are, like you said earlier, “vulnerable,” or you know, I think people have a certain image in their mind of what that might look like. And I think that there’s a very broad spectrum of people who fall under a title of “immunocompromised” or “neurodivergent” or all these different labels. And I think that it’s important to show the full spectrum of what that looks like. I know I’m not representative of a lot of people in this large umbrella community, but I am one of the people who is in it. And I think that I have been a vocal and public figure for certain things and I don’t know if anyone, like I said, would know that I’m dealing with this struggle every day. And you know, it does take a huge toll on me. So I think if more people knew the struggles that we were going through, maybe there’d be a little more compassion, and we’d be a little bit more proactive in putting forth change and policies and things that work for people like me. Yeah, so I figured it was just a good way to sort of get more people into the fold in some way. I feel like I’m, in some ways, a very easily-palatable person to take in. So if I’m non-threatening and I have a message, maybe people will listen to it.