Posted January 31, 2024 by Alice Wong Guest Blog Posts

We Survive Together: Interviews with Organizations Fighting against Disaster Ableism and Injustices: Part 2

Akemi Nishida

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

For part 1 of this article, please go visit here.*

This is the second of a two-part piece featuring interviews with organizers, Maria Palacios in TX (Crip Survival Network), Rickii Ainey (Ainey & Volion Consulting) and Ashley Volion (Disability Rights Louisiana) in LA, and the UPRISE COLLECTIVE in OR.

“And then also realizing wow, I hate capitalism. I hate all these things because our lives are literally [always] in danger… Natural disasters … put a spotlight and really show … clearly the inequality”—Alecia Deon and Alice Wong, Disability Visibility Podcast, Episode 14

How does disaster ableism shapes everyday lives of disabled people? What are their critiques of the state disaster management? What does crip survival teach the world? Disability Visibility Project has previously documented individual stories on disaster ableism.

What this article and its first part are doing is to turn our attention to crip survival—how disabled people come together to survive disaster ableism. Organizations leading disaster supports with disability justice and rights principles are featured in these articles.

What is disaster ableism?

Further enforcement of de/valuing people based on their dis/ability and in/capacity through disasters. It entails;

disasters to be used as opportunities to further disregard disabled and other marginalized people’s lives that are considered as disposable to society;
over-estimation of human’s ability to control the environment and contain natural disasters; and
eviscerating the responsibilities of state, capitalism, and other oppressive forces that cause disaster ableism by accusing the nature or one’s disability and incapacity as a cause of higher casualties among disabled population.

Examples of disaster ableism

how ableism is engraved in disaster prevention, preparedness, response, and recovery;
many people become (further) disabled and left to fend for themselves during and after disasters;
eugenic notion of “survival of the fittest” is imposed and justified; and
the death of disabled people to be considered as an expected loss due to one’s disability and not due to the lack of comprehensive disaster management at the government levels

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

Maria (Crip Survival Network) There’s so many challenges, and the majority of them are related to poverty. Not only do people live below the poverty level, [but also] support an entire family—and this is the case for many immigrant and undocumented [communities]. In many states, people cannot access emergency food and help if you’re undocumented and disabled, because wherever they go, they have to have I.D. How do you prepare for [disasters, when] you’re barely making it day to day. It becomes much easier to have the mentality of ‘out of sight, out of mind.’ That kind of mentality is another challenge we face. Disabled people in oppressed cultures have become so oppressed that we internalize it in order to survive. Internalized ableism and all the levels of oppression will lead many to think that they deserve to be left behind. The system forces marginalized disabled people to stay poor and to depend upon the oppressor to stay alive; then to believe that the oppressor is doing enough. Well, they’re not.

Rickii (Ainey & Volion Consulting) Poverty plays a huge part in natural disasters. Most persons with disabilities don’t have enough money to get them through the month, let alone saving for disaster-related costs. Most people [in New Orleans] know how slow the response was for Hurricane Katrina. Recovery is always a long road. I don’t think recovery will ever be any different. It’s been the same since I was a child.

Ashley (Disability Rights Louisiana) [In New Orleans,] the city doesn’t have any centralized governmental agency that helps curate disability needs during disasters [except for NOLA Ready]. They do have their department, NOLA Ready, but it only has a handful of full-time positions. We know that when it comes to depending on the government for [disaster-related] assistance, it’s a ‘no go.’ We have to depend on the community. But, the New Orleans disability community is disjointed and hard to be a cohesive collective. I don’t want to put it all on the [disabled] people because people have to work and get their own care needs met. I know that [intimately, since] I’m a woman with cerebral palsy. During Hurricane Ida, I couldn’t evacuate because I couldn’t afford it. That happens a lot in Southern Louisiana because we’re a very low-income community.

UPRISE COLLECTIVE In 2021, the City of Portland put out a report that said they have no plan for Disabled people during a disaster. The COVID-19 pandemic highlighted how economic prosperity was more important than the lives of Disabled people, especially Black and brown Disabled people.

If the government can’t find the resources to support us in a disaster, how [can] nonprofits relying on those same funding streams, provide for our communities? When we held our No One Left Behind event, we invited community members to share what they needed in a disaster or were doing to prepare. One of the things that is important to us is thinking through an intersectional lens. We are Disabled, but we are also Black and brown and many of us are queer, and we have to think about the layers and waves of disaster.

Akemi What kinds of disaster-related work have you and your organization been engaging in?

Maria [The Crip Survival Network] recognizes that not only are we facing the Mother Nature related disasters, but also the political bullshit and ableism as a threat to our lives. That’s why sharing evidence of our survival and Crip Hacks of how we do things is so necessary. That’s how the Crip Survival Network was born. We think outside the box and allow the communities to define what their survival needs are. Our crip survival depends on our ability to learn from and constantly remind each other that our humanity is worth saving, because society is so convinced that we are discardable.

We are developing a map to help each other and enter information of personal resources we already have. One of the strategies that we’re utilizing is thinking about the things that we already possess, individually and collectively. I live in a wheelchair-accessible home [which] is a resource. When it comes to saving each other, it takes giving and sharing our resources and experiences.

We are looking to partner up with people in other cities, not only organizations but also individuals doing [the] little part they can do! We connect with other organizations who are doing social justice work. We are gonna have training on surviving disasters and disability justice. We’re also in the process of providing funding for each organization who is gonna decide how to save their communities. Each community has different ways of defining disasters as well as different needs and ways of surviving. Some communities might need those funds for abortion rights! We have to be intentional with the way we survive and speak our truths.

Rickii Ainey & Volion Consulting does trainings for people with disabilities on how to prep for natural disasters by providing them emergency phone numbers and [informing] evacuation pick up locations and what to pack when evacuating. We, the co-founders of the Consulting, both had bad experiences with hurricanes. It is so important to do our best to educate our community. It is also imperative to educate those without disabilities [about] what our needs are and how to best assist us.

Ashley The role Disability Rights Louisiana plays [at the time of disasters] is connecting entities. We provide resources on our social media platforms. During our last major hurricane, our 311 Information Service and 911 were down for a while. We posted where you can find shelters, water, and food, as well as power stations or cooling places. [When] we get phone calls from clients about needing assistance, we get them connected to the right place. We are a pro-bono law firm and had quite a few lawsuits due to the last hurricane because nursing home facilities were not prepared and some casualties happening. Our biggest role is to ensure those with disabilities are taken care of, because in emergency situations, people with disabilities get left out.

UPRISE Early in 2022, our team developed the Disability Emergency Preparedness Portland Project which was two parts: (1) starter packs of Emergency Kits, and (2) a skill-share between disabled community members. For the kits, folks shared things they found important to have for their unique disabilities. We also provided a fan, filter, and KN95 masks given the massive wildfire seasons that pose a major concern to disabled people. Another important part is building relationships. No One Left Behind event uplifted disabled people’s own stories and sharing skills. Community building is the cornerstone of how these skills, resources, and stories live on. Uplifting the work of those most impacted and using our platform [for it] is how we work across movements toward liberation.

Akemi What do you demand of governments and other nonprofit organizations working on disaster management about how they can support disability communities?

Maria Invite disabled people [from] marginalized communities to sit at the table to share our stories, because things happening at the government level are given by non-disabled people who think they know what’s best for us. If they deem that our lives are not fixable, then we become not worth saving. We demand the leadership [of] the most impacted, and [governmental] programs [to be] created and implemented because disabled people had a say in them and [by] taking into consideration the needs of disabled communities. If we learn disability justice and abide by its principles, then things begin to fall into place.

Rickii I would demand being seen. That’s why getting to know your community leaders and local politicians [is important]. They play a powerful impact on the way your day to day life operates.

Ashley Listen to us, know that we have needs and ask us what our needs are. I would demand better preparation and value every human life. I want to see people with disabilities, and people with various disabilities, put into those [leadership] positions, because [we] know what we need.

UPRISE All information [to be] provided with options for American Sign Language (ASL) interpreters, tactile interpreters, video relay services with captioning and ASL, communications boards, in various languages, and by using culturally appropriate communication. Information should also be shared in places our communities already get information, [since] we may not all have access to internet and cellular services.

Care Kits: We recommend the following resources be offered during a disaster:

Backup power sources
Coolers with ice for medication
Sensory kits, such as noise canceling headphones
Art supplies
Elder, infant, or pet care kit
List of crisis helplines and organizations
Water purification kit
Foods that meet dietary and cultural needs
Culturally appropriate healing/medicinal items

[When it comes to] disaster preparedness, we learn from our and our ancestors’ experiences to recover [from] as well as prepare for the next disaster. Preparing for a disaster can reduce the harm, help us recover quicker, and provide a sense of control.

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

Maria My message to the next generation of Crips is; You have the floor! You deserve to live. You are here for a reason and are so important to the world. We need you! Our Crip ancestors are so proud of you. Keep existing because the non-disabled world cannot make it without you! Keep on sharing your voices, stories, and fountain of Crip resources and survival! Each one of us already have everything that we need to make a difference even when we think that the world has taken it away from us. Keep loving yourself, because loving ourselves as disabled people is the most revolutionary thing that we can do.

Rickii Get involved with your community. I make it my business to know my neighbors. They look out for me if we have emergencies. [What] I find [as a] key to survive day to day life and natural disasters is having other friends with disabilities [who] can empathize and relate to things.

Ashley Always be prepared. I keep a stock of water and canned goods. I have a backup power bank and battery chargers in my suitcase. I’ve tried to digitize my medical information. Always keep a list of Durable Medical providers [who fix wheelchairs and other things]. Keep an extra supply of your medication. In times of hurricane evacuations, you can ask for a little bit more medications from your [Medicaid supported primary care providers]. Keep a list of contacts in your area.

Resources recommended by UPRISE

World Institute on Disability (WID) focuses on Disability Rights and often collaborates with emergency management agencies during disasters.

National Council on Independent Living (NCIL) advocates for the human rights of people with disabilities and provides resources for emergency preparedness.

Groups/Orgs UPRISE works with or shares resources:

Books/Articles:

Disability and Disaster: Exploration and Exchanges, edited by Ilan Kelmen and Laura M. Stough
Pod Mapping – Mia Minugs (ANYTHING Mia shares)
Care Work – leah lakshmi piepzna-samarasinha (ANY book by this author)
Anything (obviously) by Alice Wong

Notes: Maria and Ashley were interviewed separately by Akemi. Rickii and UPRISE COLLECTIVE separately provided written responses. UPRISE COLLECTIVE’s responses were written collectively by its members. Akemi brought all the responses and edited them into this article. 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

A photo of Akemi, East Asian woman with side shaved medium length black straight hair. She is wearing a black beret, green scarf, and a white mask. She is sitting outside in front of river and trees

Akemi Nishida (she/her) uses research, education, and activism to investigate how ableism is exercised in relation to other forms of social injustices as well as to contribute to disability justice. 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.

Maria Palacios, also knowns as the “Goddess on Wheels,” is a poet, author, spoken word performer, and workshop facilitator. Maria’s work echoes the resilience of crip survival, reflecting her own experience as Latina, immigrant, disabled woman. She is a co-founder of Crip Survival Network which is a Sins Invalid-born disability justice initiative. Crip Survival Network is about survival, disasters, and how to keep disability and other marginalized communities alive. The Network includes twenty organizations that meet regularly to build solidarity.

A photo of Rickii, Black woman with curled medium-length brown hair smiling at the camera. She is wearing pearl necklace and green shirt.

Rickii Ainey is a co-founder of Ainey & Volion Consulting. Rickii combines her personal and professional experiences to work extensively in the Disability Community. She advocates for the community by mentoring other advocates, providing leadership supports for organizations, among other powerful work she engages in. Ainey & Volion Consulting provides organizations with services to fit their unique needs regarding disability supports and services.

A photo of Ashley, olive-skinned Filipina/White woman with curled reddish brown hair down to her shoulders, smiling with her head slightly to the side. She is sitting in a power wheelchair wearing a black cocktail dress with a gold zipper going down the middle with her hands crossed in her lap

Ashley Volion is a Policy Assistant for Disability Rights Louisiana and co-founder of Ainey & Volion Consulting. Ashley is a native of Louisiana and has Ph.D. in Disability Studies from the University of Illinois Chicago. Disability Rights Louisiana protects and advocates for the human legal rights of people with disabilities of all ages across the state. They work to empower the disability community to live an integrated life, free from abuse, neglect and exploitation.

A photo of three UPRISE COLLECTIVE staff members. Brianna who is on the right is a Native/Ihanktonwan person, wearing black mask, green shirt, golden bear-shaped necklace, and wood earrings with abalone shells. In the middle is Stephanie, a Black/Native woman wearing black mask and grey cardigan. Their black hair is tied in the back. On the left is Ginia, a Blauan person, wearing a white mask, multi-colored shirt, and jeans. They are all posing in front of a blackboard.

The UPRISE COLLECTIVE opens spaces and provides support for targeted community members to engage in social uplift within our own communities. UPRISE was founded by and for targeted community members (BIPOC, queer, trans, sick/Disabled). Because of this, we develop programs that align with feedback from our community and membership. We host storytelling events, book clubs, civic engagement opportunities, collaborate with other organizations to advocate for policy changes, and work to coordinate survival resources, skills, and knowledge between and across our communities. This includes our [UN]Titled Disability Justice Project which houses our No One Left Behind, Disability Justice Means Disaster Preparedness, a quarterly Demystifying Disability Speaker Series, and DJ Coffee Hours. Our programming seeks to not only educate about the systems of oppression we live within, but ways to work together to celebrate our resistance and survivance.

We Survive Together: Interviews with Organizations Fighting against Disaster Ableism and Injustices: Part 2