José and Gabrielle
An audio story produced by Alexa Burke
Illustration by Micah Bazant
In this conversation, José Hernandez and Gabrielle Broder, both of whom are classified as C5 quadriplegic, talk about their experiences living with a disability during the pandemic.
Gabrielle: So pre-pandemic life, basically I spent a lot of time in the gym working out.
— Mid-tempo music plays —
The Axis Project is a gym and a community center for people in wheelchairs.
José: Gabrielle and I met through the Axis Project in Harlem.
Gabrielle: After my accident, I was going there five days a week to work out. I felt like my full-time job was to just do as much as I could toward my recovery.
José: I’ve been injured for 25 years and she was a newcomer, and we have very similar injuries and just paired up and started talking about our injuries.
Gabrielle: My name is Gabrielle Broder and I live in the West Village in Manhattan.
José: My name is José Hernandez and I live in the South Bronx.
Gabrielle: I have a spinal cord injury at the C5 level which is in the middle of my neck. About five years ago, I was driving home from work and actually collided with a tractor-trailer. I am paralyzed from the chest down. So I do have partial movement of my arms and fingers.
José: I’m classified as a quadriplegic with limited movement in my arms. I have no movement in my hands.
Gabrielle: I mean, of course, it was weird were hearing about it on the news, you know, January February, there’s this thing in China.
— News sound bite —
“Breaking News Tonight is the Coronavirus now spreading in the US the first case in the country of unknown origin,…”
I felt pretty vulnerable because I have very, very weak lungs from the paralysis, so I felt like this is not going to be good like I can barely even cough. If I get it in my lungs, I don’t know how I’m gonna be able to cough it out, and then plus I live with my mom. She’s 78 years old. When everybody was talking about quarantining and shelter in place, I was like, yeah, that sounds like a great idea to isolate myself for a while, except that I can’t, because I rely on the homecare 24/7.
José: I have 24-hour care, two 12-hour shifts. It’s called the Consumer Directed Personal Assistance Program. So basically, this gives us the freedom to hire, train and fire our own personal care, and not only that, it allows them to do nursing home level care.
Gabrielle: Administering medications, things with my catheter, transferring me by lifting me back and forth from the bed to the chair. It’s a very intimate relationship. It’s like they’re kind of everything. You have to be like friends with them, and you also have to be their boss. You also have to be their patient, and it’s a very weird relationship.
José: My aide Fausto Romero was more like a father figure than, you know, my aide. I went to church with his family. I went to parties with his family, we did barbecues together. He was an older person, 60s, but he’s quick-witted, so you had to be really careful about what you said because he’s gonna make a joke out of it. You know, he did help me out around the house, but I was late 20s when I met him, and I didn’t have a father more or less growing up, he came in and filled that void.
Gabrielle: Before COVID, I had about six to seven people and then I had a few who were my backups. People from Bronx, Queens, Brooklyn, o we’re like in all the boroughs except for Staten Island. Maybe a week or two into the shutdown, I got a phone call from one of my aides saying, “Oh, I can’t come into work today because I just found out that my sister tested positive.” The next day after that, she called back and said I actually have a fever now and a cough. Then, I also realized that I had been exposed already because she had just been with me the day before. The day after that, two other aides said that they also had a cough and didn’t want to come in. Somebody else said that they were immune-compromised. Somebody else had oral surgery or something and everybody had different crises going on. At one point, out of the ten of them altogether, I was down to only, I think, one or two people that were able to come in for any shifts at all. That was definitely a scary moment.
José: It was the end of March, beginning of April, ambulances blaring all over the place. I live near a hospital so that’s all I heard all day, every day. Fausto, he works Monday through Friday, and every Friday evening when he goes home, I’ve always hated this, I say, “Hey, I’ll see you on Monday”. He says, “God willing if he gives me another day of life”. I’m like, “Stop that shit, I’ll see you on Monday, you know, take care.”
That Sunday during the day, he calls me and says, I’m not feeling well. I’m thinking that he has the flu, but you know, you just can’t take that chance. So I was like, just feel better. I’ll see him the following week. The following Saturday, he went into the hospital not being able to breathe too well. One week after that, he went on a ventilator, and it was like 24 hours on a ventilator. That was it. On Easter day, he passed away. I was devastated, I cried. Unfortunately, for me, I had a lot of experience with death, and so I’ve kind of become numb to it, you know, in a sense. He passed away, I cried that night. The next day, you have to move forward.
— Mid-temp music plays —
Gabrielle: I actually developed a mild fever for a couple days, which was very scary. But fortunately, it didn’t get any worse. Probably the lowest point was nobody showing up to work. I did reach out to several peers, including José.
José: We were texting back and forth and she would text me, “Hey, do you have anyone?” I would text another friend, you know, try to help each other as much as we can.
Gabrielle: When there was like nobody left to call I just didn’t know what to do. There was about a week and a half where my mom was doing the majority of the shifts by herself. My mom and I are very close. She was a single mother when I was growing up, and I’m an only child. But when she gets stressed out and when she gets anxious, she tends to just get overly emotional and hysterical about everything. I’m kind of the calm one. I’m just trying to calm her down. I was trying to minimalize what I needed her to do. Obviously, I’m not going to expect her to do everything that the aides would do on a daily basis because she’s not physically capable to do all of those things. She did break down crying several times to just start screaming, and get frustrated like I don’t know how I can do this today. I don’t know how we’re going to survive. But mostly, you know, she tried to stay calm and just get it done. I did feel like it was a very heroic act. I was like, oh my god, she’s pushing herself to do something that she shouldn’t be physically capable of even doing. She just did it hour after hour, day after day. I mean, the aides after their 12-hour shifts are completely dead tired, ready to go home and sleep. My mom was on for, you know, 48 hours in a row at some points, so it was pretty amazing that she was able to get through it.
José: Gabrielle with all of her issues, the possibility of her going into a nursing home was real. If anything was to falter where her mother let’s say she had gotten sick. There was no one else to help her. I don’t think people understand how much these homecare workers do. It’s really personal work. You’re dealing with bodily fluids, you’re dealing with urine, they’re dealing with feces, you’re dealing with sweat, you’re dealing with blood for $15 an hour. If our workers were paid better, we would have a bigger pool and you can hold your aides to a higher standard.
Gabrielle: It’s a tough balance because ideally, I would love to ask them to all wear a mask when they’re working with me still, and I would like to have them wipe down lots of surfaces multiple times a day, but I feel like I would get a lot of pushback. I can’t push too hard because people are gonna not want to come into work.
José: Because of our care workers, we didn’t go into nursing homes, we didn’t already burden the system that was already overburdened because of our essential workers, so it fired me up. I want them to be recognized for what they do and valued for what they are, essential.
Alexa Burke: That was José Hernandez, the New York City advocacy coordinator at United spinal and Gabrielle Broder, who was the assistant manager at their gym the Axis Project prior to the pandemic. This piece was reported and produced by Alexa Burke with funding from the American Association of People with Disabilities
