Katie Thompson
& Family
Eutawville, South Carolina
“I wonder how many people will actually come to a reckoning with how fragile our own health is. We have a system that doesn’t support us and then, you know, we’re very human, very failable, and very mortal. So I’m interested in how people will view the disability and chronically ill community continuously after this.”
Ryan Roach: What has your experience been like during the pandemic?
Katie Thompson: Very surreal. At first it was like living in this constant level of anxiety not knowing how things were going to be changed – how things were going to be different, how it was going to impact my health, how that was going to impact my family. It was almost kind of like you had to stop and take a breath because it would be so easy to spiral out. Being disabled and chronically ill, you kind of get very dependent on routines. You get used to your medication routines, seeing certain doctors, getting certain treatments. So there’s been that constant level of unease that everybody’s been feeling, but then it’s like a little bit extra. I feel, like, leveled up for me as far as stress has gone. That being said, it’s [deep breath] been a weird dichotomy of the most wonderful dream-like state – like, better times than I could have ever asked for spent with my family and my children. But then there’s also been that underlying anxiety and stress. And you live your life and you think you’re [sighs] going through hard times and you think everything’s okay. Well, right now, it’s not okay, you know? The world is in chaos, and adjusting to that, living with that duality of – I’ve got all this extra time to spend with my family, pursue projects I’ve put off for a long time. I don’t have to go anywhere, which is really good for me because, even though I am, like, isolated and spend a lot of time at home, I like it. I’ve grown to like it over the years. So there’s a lot of positives and negatives going on right now. It’s like one day at a time. [Laughs].
RR: What has your day-to-day been like during the pandemic?
KT: So a lot of my day-to-day has stayed the same, and, again, a lot of it’s changed. So before the pandemic it was very much a full-time job for me to be going to treatments and appointments and things like that. That has all completely stopped. My children would also go to daycare during the day. Now my husband and I have them 24/7, so we don’t have that sort of break time to do our work or take care of ourselves or take a shower. [Laughs]. All those things that come along with parenting two young kids. Then, in a lot of ways, it hasn’t changed a whole lot. I’m used to being at home a good bit and kind of being a self-starter and kind of getting into my own little world. And so it’s weird. [Laughs]
RR: What has parenting been like during the pandemic?
KT: It’s, again, been really awesome because I’ve wanted nothing more than to spend all day every day with them since they were born. And then it’s also been really hard and I’m sure a lot of parents can relate to that. Again, our routines are disrupted. I’m fortunate that – or, we are fortunate that – our children are three and four years old, so they’re still pre-school age. There’s not, like, this worry that they’re going to get behind on school. There’s not all these other extracurriculars they were involved in that they’re missing just yet. So that’s been not so much of a big adjustment for us. However, they notice something is up: they can tell something is different. And we try to do our best to explain things in age-appropriate ways, but often kind of maintaining your stress levels and making sure their routine stays the same. We’re trying our best not to necessarily shelter it from them, but we didn’t want their day-to-day to change any more than it already had. When at first, like, the shutdown and everything happened, they kind of went bonkers for a month. They were like, “No routine? No school? Like, whatever, I’m not listening to you.” But I knew it was ‘cause their routine had been completely disrupted. And people they had been seeing every day five days a week for a couple years now and had gotten really close to, you know, their friends and stuff. I really felt for them. So we’re definitely growing together in unique and unexpected ways right now.
RR: During this time period there has been a lot of information about COVID-19. What has your experience been like accessing information about COVID-19 and the pandemic?
KT: [Sighs]. If it weren’t for social media and Twitter, I’d worry about how not rapidly some of these really important messages would get out to people. I’m primarily dependent on getting information from the internet, and I’m still getting it from official news sources on the internet. I live in South Carolina, and I said today, “We were the first to secede from the Union, we are going to be the first to succumb if we don’t do something about this.” We’ve opened back up, our leadership is giving us a false sense of security, and people are getting sick by the thousands every day. So, I’ve really had to kind of inform myself and I don’t feel like I can really trust the powers that be right now.
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”?
KT: I first want to say that the term “vulnerability” bothers me because I think we’re only vulnerable because we live in a society that makes us so. They don’t take care of us. They don’t support us. They aren’t looking out for us like the laws say they need to. That’s why we’re vulnerable. We don’t have the support that we need. That being said, I feel like it’s kind of derogatory in that way, but then there’s also an underlying truth. We are ill; we do have health problems; it is riskier for us to go out there; we are more likely to succumb to this. So it’s not disregarding that at all. But I feel like the government is kind of using it as, “Oh, they’re vulnerable,” like, “they’re gonna get sick anyways” and brush it off, which of course I don’t like. I feel like it’s dehumanizing in a lot of ways. I also feel like using the term “vulnerable populations” is very falsely reassuring to young, healthy people because they’re thinking, “Oh, if I get COVID I’m gonna be ok,” and that’s not necessarily true. Again, here in South Carolina, the highest age group with 21% of our positive cases are 21-30 year olds and that is the largest group that we have right now. So I feel like it’s bad for everybody all around. It’s derogatory to disabled and chronically ill people, and I feel like it’s also giving a false sense of security to people that are really just as susceptible to this horrible disease as we are.
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?
KT: Again, I think it comes down to how people view the disabled and chronically-ill community as less-than. I think they have infantilized us a lot. The talking heads you see on these talk shows and things like that, I mean this is a great time to discuss that. If everyone else can Zoom into MSNBC, then why can’t a disability advocate? That barrier doesn’t exist anymore. I feel like the excuses are too easily refutable now. That being said, I feel like it’s definitely something that – the people that have access now – it’s their responsibility to make sure that they leave that door open and actually, like, reach their hand out for other people in the disability community to be able to come out and share their expertise.
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?
KT: Yes, so protesting is very near and dear to me, and seeing what has happened to my friends and neighbors of the Black community, especially here in South Carolina. Again, it’s one of those things if you’re from here and you see it, there’s no denying it. There’s no denying that racism exists, there’s no denying white supremacy is definitely running South Carolina, and appears to be running our entire country now, too. So not being able to protest was really hard for me. It was this one thing: it was on Saturday night that there had been peaceful protests all day in Charleston, and it then appeared, like, a second group had come in and started doing a lot of vandalizing. And there were fires set and a lot of windows broken. And me, doing my advocacy work by talking with some friends on social media, saying, “Alright, I know things are gonna be intense coming up and there are gonna be peaceful protests. And there may be young kids who might make bad decisions, they might be in the wrong place at the wrong time and they are gonna need help.” So we were saying, “Is there a bail fund?” And after a quick search, we didn’t find anything. And my friends were like, “Well, why don’t you just start one?” So I did, and I thought, “You know, I will plan to hand it over,” just to kind of go ahead and collect the money. But that way, I could be sure it was going to where it needed to be going. ‘Cause we didn’t find an official bail fund, and we didn’t find an official Black Lives Matter chapter in Charleston either. On Sunday morning, like, right off the bat, this amazing young organizer called me, and we’ve teamed up. I basically told them what I was doing, and that I totally planned on handing it off, and they were like, “Actually, we could really use your help if you could manage this.” Sunday that afternoon, there were peaceful protests and everything, but of course they were met with police brutality. So, within a couple of days, we had [sighs] I don’t even know, it happened so fast – the total is like $110,000 where we’re at now. It literally went from me sitting on my couch here in my office in my pajamas on a Saturday night being like, “I’m sick of this. I’ve gotta do something. I know there’s gonna be kids out there protesting. Like, if this was me 10 years ago, I would be out there with them, and I feel like someone needs to be looking out for them. This is what I can do.” And the world responded, and the protesters shared their stories, and people just believed in them. I feel like I’ve gained so much out of that experience – to give somebody else an opportunity to develop a way to have representation and an organization in our community that is leading significant change. Charleston was kind of the birthplace of slavery in America. So many slaves came through Charleston. And my first visit there, I just remember walking up and down Main Street, and there’s all these super historical houses. It was beautiful, and the sun was setting, and you just get seduced. But no matter what, no matter how long I lived there, there’s this heaviness, this darkness that’s there. And I really think because the city was built on the backs of enslaved people. I feel like what Charleston has stood for for so long, you know, there’s so much blood stepped into those cobblestone bricks at this point. Again, it’s one of those things, you can’t deny it. And to me, it wasn’t like “Oh, I’m not gonna be a white savior and put my nose where it doesn’t belong.” No, it’s like, “This is the right thing, this is the right thing to do.” I’m not speaking out for anyone, I’m trying to get money. I’m just, like, putting up the mic and it has to happen – it has to happen. You can’t live in Charleston and tell me racism doesn’t exist.
RR: Before we close out the interview. Is there anything we missed or that you would like to share with us?
KT: I guess really the only other thing that I’m concerned about with the pandemic is medical trauma, which is a very real thing and that’s something that I’ve had to deal with quite frequently over the years. With everyone kind of going through this major collective trauma with having our lives completely upended, and then also all these people having to confront how fragile our healthcare system is for the first time, and also kind of confronting our mortality, and just how easy you can become disabled or chronically ill yourself. I worry about this, that impact kind of on everyone from here on out. I wonder how many people will actually come to a reckoning with how fragile our own health is. You know, we have a system that doesn’t support us and then, you know, we’re very human, very failable, and very mortal. So I’m interested in how people will view the disability and chronically ill community continuously after this. I also worry about people that survive the virus and are going to be newly disabled and chronically ill themselves. We’re seeing lots of lung damage. I’m sure there’s gonna be so much pressure for transplants and things like that. I don’t think we even know the fraction of how this is going to change the community for the disabled and chronically ill, but then also for our society as a whole. Those are just other things I sort of think about and am concerned for our community.