Hannah Gallavin
& Sister Isabelle
Bristol, Vermont
“Throughout the course of my illness, I’ve had a lot of members of the community offer to get me groceries, offer to make me food, just give me money even, when they knew that I didn’t have any. And, I think, too, the emotional support of the community has been really important...the community has been what has supported me way more than up there in the government. It’s also made me feel heard, too. Which is really important in this experience.”
Ryan Roach: How do identify and could you give us a bit of background on who you are?
Hannah Gallavin: I’m Hannah Gallavin, and I identify with she/her pronouns. I am 14, I’m gonna be 15 in September. I’m gonna be a freshman in high school, and I have cerebral palsy. I think of myself as an activist especially when it comes to things in the disability community. I really love meeting people with disabilities, especially people that are my age. And I go to Zeno Mountain Farm in the summer and in the winter, which is a really awesome place for people like me. It is one of my favorite places in the world because it feels like I can be my authentic self. And I really care about making sure young people with disabilities know that they have a voice, and I want to be a voice for young people in general.
RR: What has your experience been like during the pandemic?
HG: It’s been pretty good, really weird at first how everything kinda stopped. I’d never been in a situation where the whole world kind of as I knew it stopped. Especially in the first couple months, which was really crazy because I had lived in this world where, like, Broadway was going on all the time and people were going to big cities every day and traveling in the world just kept going on and it all stopped. And I remember the last day before my school shut down. I went that day and the day was optional because parents, if they didn’t feel safe sending their kids they didn’t have to, but I ended up going. I remember talking to my friend and being like it can’t be happening, but it was. Out of like 600 kids in my school, there were 300 that were absent that day and it really changed like in an instant for me. But I’ve been finding ways to keep myself busy and remote learning was okay. It was weird. I’m really excited to go back in person like two days a week this coming year because that’s what our district is gonna do which I’m excited about.
RR: I know you said it was weird, but can you talk a little bit more about what it was like to go to school online?
HG: Yeah, it was weird to say the least. I would get up and then immediately go on my computer and we would do a question from our advisors like every day. And we would respond to a question every day for attendance. And then my teachers would give me assignments at the beginning of the week and then I would just make lists of all my assignments from my different classes and like cross them off when I was done with it, because it got really overwhelming. It all kind of got super repetitive, which was hard. I like being in a classroom when I’m learning, because I feel I’m most present, and I learn the most when I’m actually in the classroom. So it was really hard for me not having the teacher right there every time that I had a question about something, and I would have to email them. And they were doing the best they can obviously but it got really hard in the last couple months. And I did it but it was like everybody was kinda done.
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”?
HG: I don’t love it, personally. It makes me feel like, vulnerable means fragile and makes it sound like they’re not capable of a lot of things. I don’t love that because I think I’m really capable, and a lot of people in the disabled and chronically ill communities are really more capable than most people realize. I think the media kind of has a narrow, like, a narrowmindedness about it. I think it would be really different if they actually talked to a person in the disability community or the immunocompromised community or whatever. I think they’re saying what they think will be least offensive or whatever but I don’t love the word. It basically means like weak and I don’t love being associated with that mindset.
RR: What are your thoughts on how the government and the media have been treating these populations they have deemed “vulnerable”?
HG: I think they could have done a better job from the start and really asked people in these communities what they want and what kind of information they wanted. That would be beneficial to them and if they needed any special accommodations with masks or whatever.
I think in general, like, not even in a pandemic but in general, society’s view of disabled people and people in those communities that you mentioned their view is like, “Oh, they don’t really have an opinion, so we’re gonna decide everything for them, because they don’t really have opinions,” or society’s view is very, “Oh they’re so inspiring and, like, we can learn so much from them,” and I’m really tired of hearing that, because I’m not always your beacon of understanding. I think that they could have given, especially disabled and chronically ill and immunocompromised communities the information that they needed in terms of exceptions for mask mandates or if they’re really sick they can go into the hospital or whatever. I think they weren’t really thinking about these communities when they were first starting out, so I think they could have done a better job.
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?
HG: Thats hard. I think they talk about us and they make assumptions about us but then I think it’s the same with people of different races, like a lot of media and news outlets and everybody basically makes assumptions about people and talks about them but then doesn’t actually talk to a person of that community. I think they might be worried that, that we’re gonna, say, “Oh, all your terminology is wrong, and the way that you phrase things and the information that you give us is not helpful,” which is exactly what I would say, but I think they’re just being like, “Oh this is the government we have everyone’s best interests in mind.” Which I don’t think is always true and they say they do, but then they make decisions that really don’t include the voices of the communities that you are talking about, especially with a pandemic, and they think that they have all the right information. I think that they’re just worried that if they would talk to a person in that community or people they would say like, “Actually, uh, blah blah blah like this is what you actually should have done,” which is what I would say, but I think they’re like, “We don’t want people getting the idea that we were wrong.”
RR: Why is it important for you to share your story?
HG: I think for me it’s really important because I’m a person in the disability community, but I’m also a young person in the disability community and I want people, especially young people with disabilities, to know that they have a voice, that they can have opinions, and they should stand up for what they believe in and advocate for themselves. I really hope to be a voice for a lot of disabled young people in the world, and be like, “You got this,” like you, “You can advocate for yourself.” It took a lot of practice for me to be able to confidently tell my teachers, like, “I need you to push all the chairs in the classroom so that I could get through with my wheelchair,” or “Can you put a stopper in your door so I don’t have to pull it open?” But it’s really nice to be able to do that on my own, because it gives you a real sense of independence. So yeah my message to all the young people out there is you have a voice and you can advocate for yourself and you can share your story with other people and they will rally around you. And I’ve found a lot of people through Zeno59 which is really cool that I’m really close with, and I’ve learned their stories, and it’s affected me really profoundly. So if you keep sharing your stories with people, it’s gonna create one big community of people.