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Disability after Disaster: Reflections from a Disabled First Responder

Germán Parodi in conversation with Julia Watts Belser

July 1, 2022

Headshot photo of Germán Parodi sitting in his wheelchair in front of a multi-colored painting. Germán appears as a Brown Puerto Rican man with long dark brown curly hair wearing a black shirt with text on it: "Our Homes Not Nursing Homes ADAPT" with an icon of a person in a wheelchair breaking free of handcuffs in the center of the shirt. He is wearing a gray sweater on top.

Germán Parodi (he/him) is Co-Executive Director at the Partnership for Inclusive Disaster Strategies, a disability-led organization that addresses the needs of people with disabilities in disaster situations.  He serves as the Focal Point for Persons with Disabilities in the Americas for the United Nations Disaster Risk Reduction office. Germán deployed to Puerto Rico shortly after Hurricane Maria and is the first person with a significant spinal cord injury to deploy to a disaster-impacted area.  He is an active community organizer with Philadelphia ADAPT, an activist group working to advance disability rights and equitable access. 

Julia:  Germán, I have tremendous respect for your work.  Whether in Puerto Rico, the Bahamas, or the mainland United States, you advocate for putting people with disabilities at the very center of our response to natural disaster and other crises—and you often deploy in the aftermath of disaster to assist disabled people with immediate needs and long-term recovery.  I wonder if you’d tell us about how you got involved in disaster response?

Germán:  I got involved in the disaster response world in 2017 following Hurricane Maria when I deployed to Puerto Rico a week after the disaster. I was there for about three weeks. In addition to doing search and rescue, as well as delivery and identification of needs throughout the island, we were also meeting weekly with FEMA and with disability organizations like the Center for Independent Living. We noticed that FEMA was not involving the disability community of the island in its response and not focusing on people with disabilities. It was very painful to see this, because I’m a quadriplegic, born and raised on the island.

As a child, living in Puerto Rico with my grandmother, I lived through hurricanes. Every summer, there’s going to be a storm that’s going to cut off the power for a few weeks–it’s a yearly thought. I got my injury at 17. And actually one of the reasons why I moved to Philadelphia was to run away from hurricanes!  It was very scary. The medical system, the services that I received during blue skies, was strained by disaster.  During disaster season, healthcare was very poor.

Julia:  There’s something very powerful about having disabled people at the forefront of disaster response.  Rather than just seeing disabled people as recipients of service, you’re making the case that we can and must also be service providers. Can you tell us more about why it matters to have disabled people working as first responders?  Why is it important to you? 

Germán:  Growing up, I did not see people with visible disabilities in the disaster response world. If they existed, I didn’t see them. What I did see was this: When disability-led organizations are not involved in recovery efforts, a less accessible world tends to be constructed. 

People with disabilities are often at the margins of disaster response. That’s a real problem.  The data shows that, during or after a disaster, people with disabilities die or are injured 2 to 4 times more often than non-disabled people. Knowing that, there’s a responsibility that is not being accounted for.

Julia:  As a wheelchair user myself, I keep thinking about the pragmatic realities of working in an area that’s been struck by disaster.  I imagine there’s a lot you’ve had to think about, in terms of logistics and access.

Germán:  If you’re being deployed, you don’t want to be a strain on local resources.  You bring your own. So on the personal end, I always make sure to have the medical supplies that I need on a daily basis so I don’t need to look for supplies in the area.    

When we first deployed to Puerto Rico, we were going to be there for 14 days. And then we stayed another 7.  I use a leg bag, I use a Texas catheter, I use diapers, I have other incontinence products that I use daily. The quantity of my products?  That was a whole other bag. 

Julia:  Are people surprised to meet a first responder who is visibly disabled?  

Germán:  Once, we were in Puerto Rico making a home visit, and one of my team members was helping me transfer out of the car.  And it takes a minute for someone to put my wheelchair together. The person we were going to serve said, “I don’t need a wheelchair!”  And we said, “Well, if you did need one, it wouldn’t be this one!”

Julia:  This one’s spoken for, right?  That’s a great story, thank you.

One thing that is really significant to me about the work you’re doing with the Partnership is this emphasis on disabled folks leading disaster response. I wonder if we can talk more about that and why it’s so crucial?

Germán:  Because we have the lived experience, we understand the needs of our community.  

I’m a long-time wheelchair user.  I’ve been involved for years with the Center for Independent Living and the culture of disability.  That does make a difference. It’s not just a matter of having a disability.  It’s being involved with disability culture and learning what it takes to make the world more accessible for people with many different kinds of disabilities.

Julia:  One of the things I think about is the way traditional top-down emergency management systems often fail to connect with those who are most in need of support.  That’s something that the Partnership does really well.  How do you do that?  And how does your own disability experience make that more possible?

Germán:  We know how to find our community. When we deployed to Puerto Rico, one of the first things we did was to meet with the local Centers for Independent Living. We asked, “Where are your people that may need help?” We checked in with disability-focused schools and Developmental Disability Councils. These places are hubs. They know where the communities are.  They know their people.

We spent a lot of time going out into the community, just talking to people and asking, “Where are people with disabilities? Where are people that are aging?”  When disaster strikes, poor people, people on Social Security, people on fixed incomes, they don’t have the extra bucket of money to evacuate.  

When they see I’m also a disabled person, that creates a bridge.  When we reached Lares, for example, we were in search of an elderly couple and a disabled adult.  We’d gotten the referral through another agency, but we couldn’t find them.  But while we asked around, we encountered a man using a wheelchair and a friend of his on their porch.  They didn’t know the folks we were looking for, but they referred us to another house where several disabled people lived.  They had a few rationed supplies left, but they had no lights, no running water, and they were running low on medical necessities.

Julia:  That’s such a painful story, and it’s one I’m sure you encounter every day when you’re in the field.  How do you prepare yourself to face these kinds of stark realities?  How do you navigate that, in the field?  

Germán:  I always tell my team to be aware of people’s trauma.  As a first responder, I don’t have to worry about my own home.  I don’t have to worry about my own grandmother.  I have a safe place, even when I’m deployed.  I have that security.  The people we’re serving don’t.

We don’t give enough recognition to the trauma that disasters cause. When we were in Puerto Rico and the Bahamas, people were telling us about how fearful they are of the next storm. The howling sounds, the experience of reliving it – it’s very often not recognized. Everyone who has lived through a disaster has gone through trauma, but our systems rarely recognize it as trauma and address it as trauma. It is very damaging. 

Julia:  Listening to you talk about trauma, I’m thinking about the way your own experience as a disabled person shapes the kind of emotional expertise you bring to this work – the way you’re attuned both to the lived realities people with disabilities face and our specific needs in the wake of disaster.  That kind of attention often falls through the cracks with many large-scale emergency response systems.  Can you tell us more about why?

Germán:  We have seen many organizations that want to focus on people with disabilities, but they don’t collaborate and they don’t have disabilities and it does not work.

For example, many governments use registries as a way to assist people they consider vulnerable during disasters. But they often don’t work, unless there’s deep collaboration.  Many people with disabilities don’t understand why they should register.  Even if they do, disability commissions and other agencies often report that during an actual disaster, the registry never gets used.

We hear this issue again and again. While we were working in Puerto Rico, we assisted a mother of a child with multiple disabilities. She had used the registry, so she kept waiting for someone to bring the water and the power supplies that would keep her child alive.  But no one came.  The registry created a false sense of expectation.  In the end, she did get the supplies she needed – but it happened through mutual aid, not through official channels.

Julia:  Registries often get suggested as a way for first responders to be more attentive to disabled people’s needs, but you’re raising significant concerns with this practice.  Have you ever seen a registry work well in a disaster situation?

Germán:  After Hurricane Maria struck Puerto Rico in 2017, the Centers for Independent Living and emergency management worked in close collaboration on the island to create Core Advisory Groups in every county.  In 2020, there was a catastrophic earthquake in the southwest area of the island.  But this time, the Core Advisory Groups were collaborating with emergency management. 

It was a night and day difference from 2017.  With the Core Advisory Groups in place, emergency management made effective use of the registry to coordinate and prioritize response.  The data shows that when the government collaborates with disability organizations during disasters, more lives can be saved.

Julia:  That’s a very powerful example, and I think it speaks to a commitment that’s at the core of your work.  Collaboration with disability communities is crucial not just in the immediate aftermath of disaster, but as part of a long-term strategy for creating a more accessible and equitable world.  

Germán:  As first responders, we have to remember: we will leave afterward.  It’s risky to come in and respond, without local collaborations in place. We always work with someone who lives in the community, who knows the community, and who can tell us what will actually work well for their community.  

When we deployed to the Bahamas, in the aftermath of Hurricane Dorian in 2019, we worked closely with Howard Bowe, a paraplegic himself who lives on the island, a disability leader, well-respected locally. We spent 30 days out in the community, and Howard was with us every day.  Collaboration isn’t just about the immediate impact.  It also develops leadership locally, so local leaders are more prepared for the next disaster.

That kind of sustained attention to disability communities is a big nut to crack for emergency management and government officials in a disaster-prone moment. That’s why we need to collaborate. And when we do?  More lives are saved.  

Credits:

“Disability after Disaster: Reflections from a Disabled First Responder – German Parodi in conversation with Julia Watts Belser.” Disability and Climate Change: A Public Archive Project. July 1, 2022.

Curated and edited by Lucy Child, Amanda Chu, and Julia Watts Belser

Photo credit: Peggy Peterson

Image description: Headshot photo of Germán Parodi sitting in his wheelchair in front of a multi-colored painting. Germán appears as a Brown Puerto Rican man with long dark brown curly hair wearing a black shirt with text on it: “Our Homes Not Nursing Homes ADAPT” with an icon of a person in a wheelchair breaking free of handcuffs in the center of the shirt. He is wearing a gray sweater on top.

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