Samantha Hurley
Marietta, Georgia
“Voting is very important. I think that even aside from voting being important, a lot of people are disenfranchised from voting. Even in the midterms in Georgia, we saw a lot of racially targeted voter suppression, in Atlanta specifically.”
Ryan Roach: Could you let us know your name and how you identify?
Samantha Hurley: My name is Samantha Hurley, I usually go by Sam. I use pronouns she/her/hers. I identify as disabled because I’m legally blind, because I have albinism, and because I also have a chronic illness which is called Chiari malformation that leads to some chronic pain. You know, fun things. [Laughs]. I also have been exploring the term neurodiversity in relation to mental health, and mental illness. So yeah, that’s me.
RR: What has your experience been like during the pandemic?
SH: I don’t even know where to begin. It’s been hard. I guess a lot of my conflicts at the end of the day comes down to trying to choose between two very important and very pulling options. Things like, “Okay, do I hang out with people for my mental health? Because I haven’t seen anyone in like three months. Or do I stay home for public health and safety.” I’m not personally immunocompromised, so I recognize I have the privilege to do those things. But it’s definitely been hard, because I feel like I’m very pulled between two very strong and prominent intentions and priorities internally. At the beginning of the pandemic I was very quarantined with my family. I didn’t see anyone, like my friends, my boyfriend, or other extended family. No one other than my immediate family for three or four months. Then slowly as things began to open back up I struggled with, “Hey, do I join that, do I not, if so how do I do that?” Just kind of trying to wrestle with the moral aspect of that. It was really challenging for me as someone who does struggle with mental health, being isolated without my friends. Being with people is a coping mechanism for me. My friends often are my support network and not being able to engage with that in the way I was used to was hard. Not being able to busy myself and being in my room all day was hard. So I definitely struggled between my personal mental health and public health. Like, how do I balance that?
RR: What has your day-to-day been like during the pandemic?
SH: It’s changed a lot. So, at first, when I was in school, in the beginning, I was like, “Okay, this is going to be great, I’ll make the best of this. I’ll put on an outfit, some makeup, make myself a breakfast - a whole breakfast.” I was very invested in trying to recreate normalcy in my home, trying to pretend I was going to school. I would like, bring my whole bookbag downstairs, it was very elaborate. And that definitely did not go without negative emotions. I remember the first week of school I was very stressed out. But as things progressed, especially as I’ve been on summer break, now I do some things with social distancing measures and in masks. So now my day kind of looks like a lot of doctors appointments. I still spend the majority of time at home in my room, but occasionally I hang out with the little circle of people that I’ve kind of agreed upon with “Okay this is our circle.”
RR: As someone who’s still in school, what has this transition been like, in terms of schooling and education?
SH: It has been very strange. Like I started to touch on earlier, the first week or even month of quarantine - because we were in total isolation at this point, everyone was getting tired of it - it was really strange. School just got canceled and no one really had thorough plans of how to handle online. A lot of kids didn’t have access to the same things that I had access to, or maybe peers had access to. There was not really a great contingency plan for those situations. Everyone was scrambling, but trapped, but still scrambling to get things done and to happen. It was definitely very stressful. It was weird watching. I might know that I’m stressed in school, or there’s something stressful going on in my life, but usually there’s not a general aura of everyone being in disaster mode. But even that last week, before we got out of school, everyone was in disaster mode collectively. It was a super strange experience.
RR: How are you feeling about the upcoming school year?
SH: Uh! So many feelings. So in my county they released a statement like, “Okay well, you have to choose by July 7,” or something. We have to choose to do complete online or complete in school. It’s just wacky, because they’re not going to be able to do social distancing in school and they’re not requiring masks. I heard, 30 minutes ago that the governor in Georgia, Brian Kemp, wrote an executive order enforcing CDC guidelines in school. Then, apparently, our county took down the information they put up and had to reconvene. They knew originally they weren’t going to be able to do that. So, to sum up how I feel about the next school year; I feel apprehensive. Because even if we do go back to school safely we’re going to be out in a month. It’s going to be stressful but I’m trying to keep a positive outlook. I feel like everyone’s trying to do the best with a bad situation. But then also sometimes, I feel like not everyone treats this with the same severity so it’s hard to keep everyone on the same page. Part of me wants to be like, “Oh, this should be handled better.” But then I don’t know, would I be able to handle it better? There’s stuff I don’t know about. I’m very conflicted. I guess the way I feel about the school year is very conflicted.
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?
SH: Honestly with school I think I kind of had an easier time. Because I’m legally blind I have to rely a lot on teachers to make my papers bigger, or on being in front of the classroom and following along with lessons that are happening possibly on the other side of the room. It’s easier for me to access videos when they’re on my laptop right in front of me, or when things are digital and I can zoom in constantly. So as far as education accommodations, there’s a give and take for sure. But then with life accommodations, or things outside of school I have a lot of doctors appointments because I’m trying to figure out health stuff right now. My chronic pain, and going to pain clinics and trying to find if it’s Chiari or something else. So that’s been stressful because for a good four months I couldn’t go to any doctors appointments. The week right before everything got locked down in my state I talked to a doctor and he was like, “Here are your next steps, here are the people you’re going to go see this month.” I was like, “Oh awesome I’m gonna get my MRI, I’m gonna get into the pain clinic!” I was so excited. Then everything got shut down, so for me that was definitely really draining. It was really defeating to know I was in pain and having health problems, and then not be able to pursue any solutions to that because of what was happening, And I don’t say this to downplay what other people are going through with what’s going on with the pandemic. That’s just my personal experience. I also have a therapist and we’ve been doing online sessions and that’s been weird. Also, I can’t drive, so I have to rely on public transportation. I live in a suburb so I also have to rely on Uber. For a while I couldn’t Uber anywhere so I wouldn’t go anywhere. Even when I would go to parks and stuff I didn’t really feel comfortable using Uber. I think that the pandemic definitely does take that away, for some people, not having to rely on interactions from other people to get through their day. Or to like have experiences that able-bodied people have, being able to do things on their own.
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”?
SH: I’ve definitely gotten very upset about this at multiple points. In the beginning it was like, “Oh, everyone’s gonna be fine, as long as you’re not vulnerable, not disabled, or part of these like vulnerable populations.” It’s almost like the media and government and politicians were using that community as a scapegoat to justify feeling comfortable opening back up. And it definitely goes back to a lot of overarching political issues with things regarding the weird line we’re treading between socialism and capitalism. Do we try to put everyone on an equal playing field? Or do we sacrifice others? Do we sacrifice one group of people to allow everyone else to live normally? We’ve kind of leaned towards that capitalist mindset where we’re going to sacrifice some people to let others live normally. I think as a country we tried. We tried to quarantine for a minute there. Tomorrow they’re way reducing social distancing measures in restaurants and that stresses me out. Just keep them open, let people go out. But at least make people wear masks. I don’t know, that’s my opinion. There’s been a lot of scapegoating of these vulnerable populations and I think they wouldn’t be vulnerable if they weren’t put in danger by everyone else’s actions. Of course I’m a hypocrite because I get take out food and I see my boyfriend. So it’s definitely hard, it’s really confusing interpersonally as well. Everyone’s very quick to say, “Oh vulnerable populations? Okay, cool, that’s not me, so I can go out.” But then those people are never considered. They’re considered enough to be a scapegoat and an excuse, but not enough to be involved in the plans, and to be involved in the reconstruction.
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?
SH: People are using these populations as scapegoats to kind of excuse everyone’s behavior, and everyone’s desire to circulate the economy and live in normalcy. So it’s kind of like using these populations as scapegoats to justify our actions. But then if you include them, you see the humanitarian aspect of what that looks like of who you’re hurting. I think that’s part of it, it’s maybe strategic. The lack of representation of disabled people, or minorities in general, in the media and in political decisions is not new. It’s definitely always been an issue, The people in power don’t make money by considering everyone. So I think that’s part of the problem, and I think that’s why often disabled people are often not at the table for these decisions. I also think that the disabled community is often not recognized because the disabled community is so confusing to be honest. There are so many ways a person can be disabled. There are physical disabilities, there are invisible disabilities, there are people who have invisible disabilities that become visible disabilities, depending on the aids that they’re using. It’s just hard to group disability and see it as such a big thing, when in reality it’s statistically the largest minority in the United States, and in the world. And so, by that statistic, by that merit, we should be included, but we’re not. The way that we see a lot of people trying to unlearn racism right now it’s the way people need to unlearn ableism as well. I think that we haven’t had that boiling point. And it’s unfortunate that it takes a boiling point, even for the Black community, for people to start using the term “white ally’’ and to start posting things on their stories. It’s unfortunate that society has to reach a boiling point for us to consider each other’s experiences as intersectionalities. People in power don’t make money off of considering everyone. They don’t hold their power by considering everyone who might slow progress. When really, in reality you’re just stopping to consider everyone, and trying to accommodate everyone. Also, it’s like because the disability community is something that is underrepresented and minimally understood in society today. There’s progress that needs to be made, I think that’s why.
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?
SH: Because it threatens them. There’s a large disconnect from minority representation in politics - very large disconnect. There’s a disproportionate lack of disabled representatives in politics and in power, in our society, in our country. And I think that because people don’t go out of their way to make laws and make safe spaces and accommodations for people whose experiences actively don’t impact them. Which is unfortunate, and it comes from a place of privilege - able-bodied privilege. I think that now this pandemic has come and sweeps over the general public, and over everyone, then it becomes a necessity. Because then those people in power are affected. It’s very infuriating, I will say. Talking to my other disabled friends and activists and it’s really unfortunate to watch. It’s kind of angering. In my life I’ve asked for accommodations for things. Even when we were doing online school I tried to find solutions to do that for myself. A lot of times a lot of disabled people and I have stated, “Well I have this problem, here are these solutions.” And then that’s met with, “Well these solutions aren’t in the protocol, those solutions aren’t in the laws, those solutions aren’t in writing.” And it’s because we haven’t been considered. It’s upsetting, and I think it’s easy for people to ignore experiences that aren’t theirs unfortunately. And I think again, disability is hard to see. Like, you can’t see chronic illness. And you know, you can’t technically see coronavirus either, but it affected everyone and that’s why everyone cared.
RR: Moving forward, how would you like to see the government and society start responding to the COVID-19 pandemic?
SH: Ideologically, moving forward from coronavirus, there’s a lot of different things we could learn from this. We spend so much time in a building at school, just to come home and do more homework. So even from an educational standpoint, we waste so much time in a school building all day and then go home and do more homework. I understand that face to face learning is really important for everyone, so I’m not saying to abolish that. But I think abolishing homework, that’s reasonable, come on! Maybe I’m biased because I’m 17, but I think it’s stupid. So I think this has taught me that. Ideologically, moving forward from coronavirus, there’s a lot of different things we could learn from this. I think that this teaches us that we have the power to accommodate people. We had the power that in a month, less than that, we had the power to scramble and accommodate this virus. It really begs the question of well, now we’ve seen the response. Even when you talk about climate change activism. We’ve seen the political and systemic responses to the coronavirus. What about all these other things that we’re demanding responses to? Like, Black Lives Matter, Climate, Disability. We’ve seen the possibilities of these things to be accommodated so quickly. Now it kind of just proves to us, it just adds more passion to all of these movements to be like, “We just watched you do this in our lifetime so do it.” Like, “Do it for everyone else, because we deserve it too.” I’ve actually heard a lot of conversations about how being quarantined maybe can make people understand the disabled experience a little better. And I just hope people walk away from this with empathy for people who have different life experiences than them and I hope that people can walk away from this understanding the power that our government does have and applying more pressure to their systems.
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?
SH: I think within a lot of different movements there’s a misconception that your only way to be involved is to vote, and to protest physically. I’m not allowed to go to protests, because of coronavirus, and I’m 17. I’m a minor, so my parents kind of have a final say un- fortunately. Because I probably would have gone and worn a mask. But I don’t know, I’m mad. But anyway, I have been doing different things, like signing petitions and uplifting things on my platform. I think part of even recognizing my privilege in this is realizing I have a platform. Why say, “Oh it’s too political,” or “I don’t want people to judge me.” NO, period. I have 1,000 followers. I have 1,000 people who can see this who maybe wouldn’t have seen this otherwise. So part of my involvement in that is amplifying Black people, their messages, their posts, their businesses, in petitions, and trying to encourage that with my community. And even having those tough, controversial conversations in my DMs, you know? Talking to my friends and family. I think that’s another form of protest within the sustainability of addressing these issues and these conflicts. Online organizing doesn’t get enough credit and I think it can be really powerful. We’ve seen it be really powerful in this movement.
RR: So you are an online organizer as the communication manager of Access the Polls. Can you tell us why voting is important, especially during this time period?
SH: Voting is very important. I think that even aside from voting being important, a lot of people are disenfranchised from voting. Even in the midterms in Georgia, we saw a lot of racially targeted voter suppression, in Atlanta specifically. Addressing things like that, as well as addressing things like disabled voter suppression, through things that are maybe deliberate. Things that manifest through stigma, or things that manifest through unmet accessed needs. So that’s why not only voting is important, but fighting to make voting accessible to everyone is important. We are no stranger to the message that voting is important. We go on instagram during election days and midterms and we see the “I just voted sticker.” But it’s even more important to look at the communities that don’t typically have access to that, who are disenfranchised from voting frequently, and giving them access. Because at the end of the day, voting is one very integral thing that we get in our political system. It’s important to make sure that people don’t feel discouraged. In the United States we’re told from birth that it’s a very integral part of our culture, that we have the right to vote, that we have the right to elect representatives. When you’re told that from birth and you see it everywhere, and then you try to vote and you’re disenfranchised from that, or the systems are too hard. It’s very important to make sure people aren’t discouraged because that’s a part of their rights as a citizen. It’s important to be politically engaged and be politically active, but you can’t even start to do that if you’re discouraged from entering the space to start with.
RR: What are some ways that you’ve noted, or that your organization has noted that polling, or voting, is inaccessible? Can you give us a few specifics?
SH: Even right now, with the vote by mail response from COVID. In Georgia there was supposed to be a ban on voting by mail. It’s become this partisan issue I feel like, allowing vote by mail, versus fearing voter fraud. I think that at the end of the day it shouldn’t be a bipartisan issue. I think the mainstream media is missing the narrative that this is how immunocompromised people get to participate in the election. That is one way, right now, currently, that voter disenfranchisement is forming and manifesting itself in the election that is very crucial and about to come up. Even aside from the presidential election. In my state, and I’m sure in a lot of other areas, there are a lot of important races happening. This election determines a lot. I think that is one current day example of voter suppression, that you can look at the news and not see through that lens. Additionally, if you’re a wheelchair user, and you have a mobility aid. I know a lot of times churches are voting centers. So if your polling center, in your area, is inaccessible because there’s not a wheelchair ramp, it’s not ADA accessible, then how are you supposed to get in there to vote? Things like that, little things like that, including inaccessible voting machines. In 2002, I think 2002, there was a law that was passed requiring one accessible voting machine per polling center. This was the first time we’ve seen that, and that was this century, in my life span, that was the first time we saw this. And that’s crazy to me. And even still, we know how long it takes laws to fully be enforced. And sometimes there are still places where that’s not enforced, or they have those machines and the machines are broken, or the poll workers aren’t properly trained on how to use those machines. So there’s a lot of things like that, as far as physical accessibility that’s lacking. Or even with voter privacy, not offering large print or braille ballots for vote by mail is really damaging to a blind person’s voter privacy. Having to have someone assist you in voting is really damaging to your civic choices, your right to make that choice independently. And so saying, “We could accommodate you, we could send you a large print or braille ballot, but nah, just have someone in your house help you.” It’s not fair, It’s just not fair. That’s another example of voter disenfranchisement of voters with disabilities and why we do what we do. I’m sure there are a lot more examples.