The Intersection of Generational Trauma and Ableism - Part 2

Content warning: Mentions of natural disasters, death of a pet, ableism, COVID

Mary and Jocy continue their conversation during the second part of this interview. They discuss disabled and chronically ill individuals being left behind/forgotten during natural disasters, ableism in the education system, COVID, and more.

Jocelyn Mondragon, also known as Jocy is dedicated to building community by sharing Disability y Latinidad through a political and creative lens. She's a content creator, activist, model, and speaker. Her work on access, disability, and the intersections of race and disability has led her to speaking at universities, political organizations, and being featured in ABC, NowThis, BuzzFeed, and many more. When not creating content for her social media platforms, you can find Jocy playing with her cat or dancing in her wheelchair on her Instagram stories.

You can follow Jocy on social media here and here.

The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.

Transcript

[music playing as Mary speaks]

Mary: Hello everyone, and welcome. My name is Mary Fashik. I am the founder Upgrade Accessibility and your host. I’d like to thank you for joining me today, at the intersection of disability and politics. The road ahead can be a bumpy one, so buckle up and let's navigate this journey together.

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Welcome back. Ready to find out where this conversation goes? Good. Then buckle up and let’s go.

Mary: I'm going to say that I appreciate you offering to speak about this next topic. I know that this is a difficult topic for you to speak about, and I do appreciate it. We as disabled people are often left behind with no resources during natural disasters. I have experiences. I have evacuated for two hurricanes. I have slept in shelters on the floor because the bedding is not accessible. I now have permanent damage from being pulled up off of the floor because there was no training for shelter staff on how to help me get from the floor to my chair. I have permanent damage in my knee and my hip because of that. I am fortunate enough to still have a roof over my head. That was my personal experience. Would you please share your experience? 

Jocy: Thank you for sharing your experience. Mine is that I grew up towards the Gulf of Mexico and Louisiana and we've had experience with hurricanes. We miraculously survived each one. We had to go through Hurricane Katrina as well. And we were one of the first communities hit because you have to go straight from the Gulf into New Orleans. So our town was always the first to get hit for hurricanes. And for each one, we also evacuated. And I think it was easier when I was younger because my mom was able to carry me around easily.

But then as I grew older, it got a lot harder. And with this hurricane, the Hurricane Ida, I remember like nobody was really prepared for the hurricane. In New Orleans, you could definitely feel like there was tension and pressure and like people were scared of this hurricane. But for some reason, people down the bayou where I'm from didn't feel its urgency.

Even I, who am, like, terrified of natural disasters, didn't feel the urgency until like four days before. And I'm Mexican, so language is a huge thing with my family. So I'm usually the one that books hotels. I'm the one that makes all the preparations and all of that stuff within our family. So for this hurricane, we were running out of finding hotels because everybody was going to Texas. 

Everybody. So when it came to finding an accessible hotel, I didn't think about it. I was like, ”Oh, my God, I need to find a place to stay.” Like, the shelters here are closed down because nobody is staying for this category 4 hurricane that was turning into a 5. Nobody was staying for that. So they closed shelters. People were evacuating under mandatory and when I finally found a shelter, I had to make sure I was also pet friendly for my cat and dog.

So at the last minute, I didn't book an accessible room, but I had remembered right after I clicked pay, to write them a note for it to be wheelchair accessible. So I did let them know within, like the booking of the website, make it accessible. When we got to the hotel, they didn't read the note and they gave us an upstairs room without an elevator.

And then they got mad at us because they had to switch a person from downstairs to upstairs. And the room that we got downstairs still wasn't wheelchair accessible or even any type of accessibility. It was just a room downstairs. It was a standard room. And for me, nothing was accessible. The bed was way high. You know how those hotels have, like, those tall, tall beds.

The toilets were really high. The tub, I can't get in a tub. So that was like, just the worst to try to get my own bath in, because we were there for a couple of days. And I had a couple of accidents, like, urinary ones there because I couldn't get on the toilet or make it from the tall bed to the toilet in time.

My wheelchair couldn’t fit everywhere, so I was walking. I had a stressed out dog and a stressed out cat. My mom was stressed out because, like, you know, it's our house, it's our home. And we still have family that was staying down there. So we dealt with all of that for Hurricane Ida. And our house was in really bad condition.

People were posting YouTube videos of the damages and like Facebook videos, and we couldn't find anything on our house until my sister found a YouTube video. It was only a three second clip within that 20 minute video of our house. You could barely see from the side and our roof was gone. Sorry. Getting a little emotional. And so thinking of accessibility when you're in a high stress situation, as much as you try to make it a priority, it's so hard to.

And once our house was gone, my mom had to figure out a way to like make sure my needs were met, but make sure her needs were met, make sure the pets' needs were met. And my mom dropped me off with my sisters in a nearby city because I couldn't access that in my wheelchair. And it would be so hard with my disability, that she went down there and she had no access to food, water, all of her clothes, everything was damaged upstairs.

The roof had blown off or had fallen off or something. It was just a really hard mess. And two days later, I found out my dog had died during the aftermath because I had sent Darcy with my mom. I had sent her there because Darcy was stressed and I knew she would be less stressed with my mom. And she passed away during a really hard accident.

And there was a whole language barrier down there with FEMA hurricane stuff. People were getting so much attention in New Orleans that the bottom parishes were completely like forgotten about. So we didn't get any FEMA assistance, roof assistance, for a month. And while we didn't have any real food systems like Blue Roof which is where they put things over your roof so the rain doesn't go through.

Our things were getting wet for weeks because nobody was down there. And then when they finally had people “down there”, they were a city away where you had to drive to them. And in a town that was like really destroyed by a hurricane transportation is really rough. Gas is really rough. And that was my experience with the hurricane.

Mary: I know how difficult it was for you to talk about that. And I want to thank you for opening up about it. It’s never easy to talk about traumatic experiences and I think non-disabled people need to understand that in these situations, we are the ones that are forgotten about. I think the misconception is that disabled people are evacuated first or things like that, and we’re not. Personally, for me to go to a shelter that is for the “disabled” you have to be signed up months in advance. I’m also chronically ill, so being around that many people. Prior to the pandemic, being around that many people, I got very sick from that. So a shelter is not ideal. 

And like you said, you have to think about booking a hotel, and you’re like when do I book it? Because you don’t know when the hurricane is going to hit exactly. So when do I book the hotel? Is the hotel accessible? How long are we gonna stay there? Because you don’t know how long it’s going to take for the hurricane to pass through. When are you going to be allowed back home? Because our county, the first time we evacuated, our shelter was closing. But our county was still not reopened, so we had to struggle to find a hotel where we were. 

And the shelter is two and a half hours away from our apartment. There’s so much to think about. And again, we are so often left behind. And I think it’s important that we talk about this. So again, I want to thank you for being so vulnerable and so open about something that is very traumatic and very very painful for you. And I want to honor your pain. How can people support you with what you're going through right now with the hurricane recovery? How can they support you financially right now?

Jocy: Well right now I don't know. I–I haven't really thought of that. We started to Go Fund Me right after because, you know, everything was destroyed. So we started one for me and my mom but we stopped doing that because we were now dealing with FEMA. And things with FEMA and financial stuff are very complicated. I don't even get it.

But yeah, we actually did have this day a couple of days after the hurricane passed because our town was closed for like days. And they had to get like [unsure] and all that stuff off of the street. So we couldn't access that. But I think the main thing that I remember is that me and my mom felt completely alone before the hurricane, during and then after; because (1) before the hurricane, there were no like resources like, “Hey, if you're just able to call this number, we'll help you out.” There wasn't any of that. And (2), like you said, disabled people aren't prioritized. So you have people who had to stay behind. And we're so happy that I think there was only one I lost. And so we're glad that not many people passed away during this.

You know, we're in pain that someone had to pass away because of this but thankfully, not that many lives were lost. But that's what I really know, is like if there weren't any resources before, during or after, because I had to stay with my sisters, because of that. And I felt so bad because like there was a huge language barrier that was going on down the bayou.

Everyone speaks English down the bayou. Well, all the people that you need help from speak English. No one speaks Spanish. No one speaks Vietnamese or anything. And so you had the community really getting together to translate for each other, which is really good to have. And that's really what I remember of it. I think a lot of my memories are kind of like blurred by the trauma and losing a lot. Because we lost my house, we lost Darcy, which, you know, was the world to me.

And my mom lost her thrift shop, a bunch of things from her she lost.

And I know that this has been so difficult for you and again I thank you for being so open and so vulnerable. On top of this we are still in a pandemic. Talk to me about how society’s attitude, more specifically non-disabled people's attitude surrounding COVID, has affected your mental health.

Well, I also would like to add to the hurricane with COVID. That was really tough to navigate. I don't want to say it like this, but it's almost like COVID didn't exist, Because it did exist, but it wasn't thought of during the whole traumatic thing. Like nobody was wearing masks. We were all just thinking about getting food, water, things like that.

My mom and I, when we did evacuate, we did wear masks and we had our vaccines and all that stuff. So we were taking precautions. But COVID wasn't really taking care of down there when all that stuff happened. But with society, and now, [I] definitely had a lot of depression, still have it and anxiety. I'm housebound, so the only way I can get sick is if somebody enters the house with COVID/somebody gets sick by accident. People still get sick even with the vaccine.

So every day my mom goes to work and works with lots of people, I get nervous, I get anxious. Again, I'm housebound, so I want to leave the house one day and go do my life. I had planned to move out once the whole thing with Tulane ended (grad school where I was kicked out because of accommodations). I had planned to go live my life, move out and do something, and that had to be put on hold because of COVID.

And then it got put more on hold because people weren't following precautions or anything. And then to make it even worse, people were treating being at home as the worst thing in the world, like being housebound. People were making fun of it, which was like my everyday life for 20 something years. So my depression worse, my anxiety got worse. That's how it really affected me.

Mary: I think, you know, people are so quick to say “Oh, well, if you’re afraid of it, just stay home,” like we don't have lives and we didn’t have lives prior to the pandemic. And we did. Did you want to elaborate on what happened with your schooling, and why you had to drop out of grad school, and how that coincided with COVID? 

Jocy: Sure. So I had been struggling with grad school for the first semester. I only entered for like almost half a year and I'd been struggling to like be accommodated for a while then. But the first semester I was being accommodated in the way that I needed–where I would have remote options. So if something went to happen disability wise, I could take it remotely.

They would just turn on the onscreen camera in their classrooms and I would be in the classroom remotely, which was perfect for me. And I chose to do it remotely because I wanted the option to attend class when I could. Being housebound is tough. So whenever you can get out, you know, you want to. So that's why I wanted to do it that way, like hybrid classes.

So the second semester I needed these accommodations again where I could attend class remotely should something happen. And basically a couple of teachers were like, “We can't do this because you have to be there in person. There are certain things that we do that you have to be there for. If we make exceptions for you, then what about everyone else?”

You know that one. And I argued with like two teachers. And I told you before, one of the teachers that told me that has a sister who was a wheelchair user so that was especially rough to hear from her. And I argued with the school. I did a lot of steps for the school to accommodate me.

I went to like the disability board. I went to my department, everyone. And that's basically the same response that I kept getting from everyone. They were like, “oh, we can do this for you. You should have just gone hybrid right at the beginning.” And what they mean by that is like they wanted me to go fully online and I didn't want that.

I wanted the hybrid option, which they don't offer. But they do offer it when a teacher has like a conference out of state and she needs to attend a class remotely, or when a student is out sick or something, they offer those options. But when I asked for it, it wasn't possible. So I think it was like only two weeks that I lasted in my second semester, which says a lot. Because with school, if you miss one day, you're missing like a month of assignment even more, probably because the lectures go by really quick, especially if it’s like a seven hour day.

And so I had to choose really quickly to like withdraw from the program. Well, I was recommended I withdraw from the program instead of just dropping out, because I told them I wanted to drop out. So I was recommended I withdraw from the program, figure out my stuff and then go back to school. But when I withdrew from the program, I realized then that I wouldn't be able to go back to school because of the fact that I'm still going to need remote options available for disability stuff, if my caregiver doesn't make it.

And in New Orleans, accessing caregivers is so rough, especially if you can't afford it like I couldn't. And coincidentally, COVID happens a couple of weeks later. Everyone goes online. The teacher with the sister who has a wheelchair, who kept telling me, “we can make exceptions for you and you have to attend this class because there's no other way around it.”

She's the teacher that when COVID happened, she wrote an email and sent it, talking about how they're going to go online, how it's going to be easy, all of these things…attached a resource on how they would access online classes. Like she basically had a plan already and I withdrew from the program I want to say like late January. And COVID, I don't know. People keep saying it started in March, but I feel like it started in February. I can't remember when, but it was so close to timelines that it felt so unfair and I just felt like completely shut out. And I remember they made me feel like it was my fault.

Mary: I hate that that happened to you. It was not your fault. And you have a right to access education like your peers and you have a right to have your access needs met. And the pandemic has shown that when non-disabled people need something they get it. And we can ask for it a hundred times, and we won’t get it. But if non-disabled people need it, they get it. What is a message that you have for the non-disabled community?

Jocy: [laughs] Okay, if you're going to hire us, pay us, ask us to speak for you, then follow through with what we're giving you. Because we're tired of just giving messages if it's not going to be listened to or heard of or we don't see any action come from it. We're tired of it. It feels like you're just using us for our disability or just for you to have diversity points.

So if you're going to pay us and listen and want us to speak to you and teach you, then actually do what we're telling you to do. Yeah, that's my message. I was a little angry right there. [laughs]

Mary: That's fine. You know I told you to be yourself, and that's what you did. I want to thank you so much for joining me today and just being the amazing person you are, and just being open, and honest, and vulnerable. And I know it wasn’t easy, but I do appreciate it. So, thank you so much for joining me today. 

Jocy: Thank you so much for having me. I really appreciated speaking to you. Again, I love working with you. And I really appreciate the space to really talk about the hurricane and everything because, yeah, it was really difficult and [I was] really hurt being left behind. Especially because I remember when the hurricane happened, I think the Met Gala or something was going on with the celebrities and you know, we were left behind.  And I was really sad to lose everything and see people just go on with their lives. 

Mary: Well, thank you again for joining me. I really just appreciate you being your authentic self in this space. 

[music playing while Mary speaks] Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.

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