We Survive Together: Interviews with Organizations Fighting against Disaster Ableism and Injustices: Part 1

We Survive Together: Interviews with Organizations Fighting against Disaster Ableism and Injustices: Part 1

 

Akemi Nishida

 

*La version en español de este artículo estará disponible pronto en esta página web.

For part 2 of this article, please go visit here.*

 

This is the first part of two articles expanding on disability survival brilliance by focusing on the works of grassroots organizations featuring interviews with Ínaru Nadia de la Fuente Díaz in Puerto Rico (co-founder of La Sombrilla Cuir) and Germán Parodi in PA (co-director of The Partnership for Inclusive Disaster Strategies).

Human-intensified, natural disasters do not hit everyone equally. Communities of color, disabled and sick, working class and poor, queer and trans, immigrants, older individuals, and in geopolitically disinvested regions are disproportionately impacted harder by disasters. It is often the case that the rich and their corporations hasten environmental deteriorations that lead to the intensification of natural disasters. Thus, on-going interlocking oppressions and (state) violence mean emergencies and disasters become a daily occurrence to many disabled people.

Disabled people, and particularly disabled people from multiply marginalized communities, fight to survive ever-intensifying disasters. This article illuminates the life-saving and -nurturing works of the few, but powerful, organizations resisting disaster injustice. By centering teachings of disability justice and rights activism, and tapping into crip wisdom, they reimagine disaster prevention, preparedness, response, and recovery. 

 

Akemi What are the challenges disabled people face in relation to disaster?  

Ínaru (La Sombrilla Cuir) When I use the term ‘disaster’, I don’t use it as coming from Mother Nature. I use it [as coming] from the government, and how they don’t have an adequate response. The government in Puerto Rico tries to adjudicate the [disaster] issue to Mother Nature, as if we didn’t live in a tropical island and a hurricane wasn’t [already] part of the things that happen every year. The infrastructure has not been made for holding hurricanes or earthquakes, [because] it has been made to copy the U.S.A. [whose] conditions are not the same. 

I have invisible disabilities and use a C-PAP to sleep. When [Hurricane] Maria or the earthquakes came, I was unable to sleep because I had no electricity to use C-PAP. I started taking these points to the rest of the [La Sombrilla Cuir]. La Sombrilla Cuir works with disabled people. Every time there is a disaster in Puerto Rico, electricity or water will [be gone] for a whole week, a month, [or] years. A lot of us, people with disabilities, need clean water and electricity for sanitary and health purposes. 

We barely have good transportation here, and it’s not accessible. We are living under ‘austerity’ because the fiscal control board over Puerto Rico has taken away funding from every single area. People with disabilities are the first affected because accessibility services are the first to be taken away. Trans and nonbinary people [in particular], we barely have any opportunities of working or even getting a medical plan. A lot of us [trans and nonbinary people with disabilities] are the first people affected.  

Germán (The Partnership for Inclusive Disaster Strategies) In the United States, 27 percent of the population are people with disabilities, and all are subject to experience ableism throughout all phases of disasters. In preparation and emergency briefings, information is often not accessible. They don’t use plain language or sign language. Rarely is there information in multiple languages. [When] emergency alerts happen, many times disabled communities are not informed about: “What do they mean? What actions am I supposed to take?” The emergency management world has focused on the survival of the fittest—“Those that can make it, here’s what you do. Everybody else, people on fixed income, immigrants, you figure it out.” 

The evacuation itself, many plans do not integrate accessible transportation or don’t have vehicles themselves. I’ve read documents saying, “Call paratransit to evacuate.” That’s not a solution. Many times, paratransit is stopped 48 hours ahead of a disaster. Shelters, oftentimes, the accessibility is verified after it’s open. 

For the disaster recovery services, you have to go to a disaster recovery center. If it’s a hurricane, there’s often heat afterwards. So, you’re out there in the heat, waiting in a long line [to get supplies]. [Thus,] I’m a quadriplegic and cannot be rolling with my manual chair and bringing [all supplies] back. 

In the recovery phase, disasters create an opportunity to reconstruct [societies] accessibly, but we do not see this. [Also,] disasters create trauma for communities, but we do not collaboratively address and work on the mental health of population.

We are not included [in disaster management]. Emergency planners know the percentages of people with disabilities that live in their communities and are decidedly not planning with and for us. We have been out of sight, out of mind. What that creates is an expected loss. 

Akemi What kinds of disaster-related work does your organization engage in?  

Ínaru Every time there’s a disaster, we try to find mutual aid funds and give these fundings to trans, queer, and nonbinary people that are Black and disabled. Those are the first people in line to get help [from La Sombrilla Cuir]. We buy them fridges or give them money to buy a new wheelchair—things people need immediately. We try to find access to services [by] collaborating with other organizations.  

Since we are grassroots, we do have our limits. We’re not a non-profit which has more permissions to do other things. We’re not formally inscribed in the state [as a non-profit, because] we don’t believe in the state. But we do what we can. During the earthquakes, we started receiving funding from a lot of people, and with EspicyNipples (another Puerto Rican transfeminist network), we made “Brigada Solidaria,” or “Cuir Solidarity Brigade.” We bought groceries and gave money for things like fridges, C-PAPs, ventilators, and wheelchairs.  

We are living in a constant disaster. We are in a crisis every time there’s a lot of rain. [Hurricane] Maria is still having its effects today. Earthquakes and the fiscal control board that’s holding over [Puerto Rican], all of that is an ongoing crisis. We are fighting and have to do more. We need other organizations to do [more]. Also, the state needs to start doing shit [to fulfill their responsibilities and earn people’s trust].

Germán We, the Partnership for Inclusive Disaster Strategies, operate the Disability and Disaster Hotline. Year-round, people can call and leave us a message or a text. If local emergency services are not accessible, we advocate. We engage with the Federal Emergency Management Agency (FEMA) and [its] Office of Disability Integration and Coordination who are helpful in elevating the rights and needs of disabled people across the disaster phases. When all other resources [such as] the Red Cross cannot collaborate with us, we supply the need through fundraising.  

We hold weekly calls on Tuesdays at 3 pm Eastern Time on Zoom, where stakeholders—local disability organizations, advocates, emergency managers, public office officials, federal, state/territorial and local government agencies, first responders, and allies across the country—often join us and provide input [on disaster updates and managements]. We hold a daily Covid-19 Disability Rights and Disasters Call at 6 pm Eastern Time. Colleagues from the [stakeholder organizations] join and give us updates, and people with disabilities express their concerns [and] seek solutions. 

Policy change. We are always monitoring the emergency management world [and advocate to them] to include us. At the Congress level, we helped to draft two pieces of federal legislation. The Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act will create ten Technical Assistance Centers, ten Research Centers focused on disability and disasters, and up to four National Projects of Significance. We are looking at reintroducing the Act, adding an emergency disaster fund to support disability organizations funded by the Administration on Community Living.  

Also, we are looking at the reintroduction of the Disaster Relief Medicaid Act. In disasters, sometimes people need to evacuate across state lines, but then you have to go through a lengthy procedure to get Medicaid in a new state, possibly with missing records because a disaster just happened. This Act will allow people to relocate across state lines and have preemptive eligibility in the new host state. We say, “Medicaid follows the person in a disaster.” We recognize that Medicaid does exclude communities. We do advocate and educate entities like the Red Cross [about their] obligations to all people regardless of their immigration status. We intervene, address, and educate [disaster management organizations] on people’s rights.

Akemi What do you demand of governments and nonprofit organizations who work on disaster management so that they do a better job for disabled people? 

Ínaru We need to put disabled people to the front, but not any disabled people. Disabled people that have [the least] privileges and [are] most vulnerable are people of color, usually Black and Indigenous, trans and non-binary people. If we take care of these people, a lot of other people will also be included. 

La Sombrilla Cuir [began] in 2018. We were gonna be a Facebook group that shares news related to non-binary and trans people. But because Hurricane Maria hit Puerto Rico, we, trans and non-binary people, started living [with] a lot of necessities. The programs non-profits had were only directed to trans people using hormones and only trans women and trans men. It wasn’t including non-binary people. So, we made an effort to educate people through La Sombrilla Cuir. 

[For] non-profits organizations, if you really want to fight for us, denounce the government. Fight against how governments make us poorer everyday [by making] policies to restrict who can receive help or not and [requiring us] to prove to a doctor what [we’re] going through. The way governments and nonprofits giving us help and money is by us guaranteeing them that we’re going to be working at some point. [They] need to stop having these policies. The government should have a welfare in which people don’t have to give anything back. Why do I have to be productive? It is our right to live well and not [just be] surviving, because we are a colony of the United States. When people of the United States are affected [by disasters], we are affected double.

Germán Governments and organizations need to radically shift their approach to disaster management by putting the needs and voices of disabled people, especially those of us from multiply marginalized communities, at the forefront. It’s not just about checking boxes for accessibility; it’s about rethinking the entire system from a disability justice perspective. It’s high time that emergency planners and organizations include us [and] consider our needs not as an afterthought but as a central part of their planning. By doing so, we can move from a system that perpetuates ableism to one that begins to support everyone.

Akemi What is your disaster-related advice to Disability Visibility Project readers and listeners?

Ínaru First, we need to be proactive to be ready for an emergency. [In] Puerto Rico, we know that [from] July until October, hurricanes and rains happen, so we should be ready for that. When the disaster happens, in our interdependence, we help each other out and make sure that we have all the necessary means to help other people. 

The second step is to identify who are the most affected people. History has told us that the most affected people are usually Black, disabled, nonbinary, and trans people. Get into contact with the leaders of those organizations. There are basic needs that people usually need in disaster. But we shouldn’t invest all the funding completely on those things because everyone has their individual needs. Some people need wheelchairs or CPAPs. Another person may need makeup because this person is going out to seek help at offices [and] might not feel comfortable having no makeup to go through these spaces, especially spaces that are already violent. The makeup might make the difference between categorizing this person as a trans woman or the office treating her like a man. We shouldn’t undermine what other people need.  

The next step would be getting these necessities [out] as fast as we can. In the case of Puerto Rico, [people’s needs do] not concentrate only in metropolitan area. The people living in the margins are the people we need to reach. A lot of people [in non-metropolitan area] face food deserts. Find ways to reach them, go to that space, get their first necessities done, and then do follow ups. Make sure more people visit those communities again and ask them how it’s going. While that is happening, find lawyers and make the government accountable for what’s happening.

Those are the steps that are taken during Maria and every emergency. They have proven very effective. Our communities are the ones that are gonna be more left behind [by the government]. Just letting them know that we’re there makes a whole difference. 

Germán We encourage strongly creating emergency preparedness culture. You hear how people talk about the weather. I’m like, “what are you gonna do with this weather?” I would encourage people to look at our Twitter, Facebook, Instagram, and website under ‘Disaster Useful Info’ about upcoming disasters, tips, tools, resources and facts for disabled people. It covers general, no-cost preparedness tips, extreme tips for extreme weathers. 

We have the Disability and Disaster Hotline during a disaster—800-626-4959. People can call and text, and we have operators that speak in English and Spanish as well as folks ready to respond in sign languages. For [non-profit, businesses, and government entities], we provide an analysis called ‘Continuity of Operation Plans’ through a lens of disability rights. 

Akemi Is there anything else that you want Disability Visibility Project readers and listeners to know?

Germán We keep up the REAADI.com for information about Real Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI) and Disaster Relief Medicaid Act. I would encourage readers and listeners to frequent the website. We are also developing advocacy tools for these Acts: how to reach out to your local representative and senators.  

We’re just beginning to enter climate crisis and chaos. Things are getting worse, and climate will impact disasters directly. If it has been difficult before, if we don’t plan, it will be more difficult next time. Creating emergency preparedness culture will mean the difference of life and death. 

Note: Ínaru and Germán were interviewed separately, and their interviews were put together and edited by Akemi.

Special thanks to Alice Wong, Nour Ghobrial, Valerie C. Barich, Joe Martello, Aly Patsavas, and Shireen Hamza for your support to make this article possible. 

 

ABOUT

 

Akemi Nishida (she/her) uses research, education, and activism to investigate how ableism and sanism are exercised in relation to other forms of social injustice and also to contribute to disability justice activism. She is the author of Just Care: Messy Entanglements of Disability, Dependency, and Desire (Temple University Press, 2022) in which she examines public healthcare programs as well as grassroots interdependent care collectives and bed-space activism. She teaches at University of Illinois Chicago.

Ínaru Nadia de la Fuente Díaz (they/them, she/her) is AfroTransFeminist activist and a co-founder and organizer of La Sombrilla Cuir in Puerto Rico. La Sombrilla Cuir is a transfeminist collective based community that understands there is a need to educate the general public on issues such as transfeminism, racism, trans and non-binary identities. La Sombrilla Cuir promotes critical analysis from an intersectional transfeminist perspective through informative posts, videos, podcasts, and workshops. *They use the term cuir, a Spanish version of queer. Cuir is used since it signals more radical and also gender, race, everything critical.*

 

Germán Parodi (he/él) is co-executive director of the Partnership for Inclusive Disaster Strategies (The Partnership) with Shaylin Sluzalis. Germán is originally from Puerto Rico where the seeds of disability-inclusive disaster strategies were planted while hurricanes and disaster preparedness were a way of life as he grew up. Coming from Independent Living movement and disability rights background, Germán and Shaylin lead The Partnership which is the only US disability-led organization on disaster management. The Partnership recognizes that prevention, planning, response, recovery, and mitigation must start with and be led by multiply marginalized disabled people who are most disproportionately impacted

 

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