Sign up for future updates and editions of The Guidebook

Section 1 – Individual & Interdependent Advocacy

Guided by insights from Britney Wilson

Transcript – Britney Wilson

Constantly negotiating your humanity from one crisis to the next can be incredibly heavy and hard to navigate. Defending yourself against disrespectful comments, dismissive responses, and discriminatory practices all while dealing with the impact of disasters can feel unbearable. In this section, Britney offers guidance on how to advocate even when your hope is low, your resources are few and when those who oppose equity erect barriers at every turn.

Lessons Learned About Advocacy Throughout Emergencies

Consider the following lessons gathered from and inspired by Britney to help guide your advocacy efforts during future disasters.

Create Your Circle

For many people with disabilities, friendships and community connections can be the most reliable survival strategy. Cultivate and nurture your relationships with people who know you and people who care enough to inquire about your well-being, treatment, and whereabouts during disasters. Remember, relationships are reciprocal meaning that you should also check in on your people with and without disabilities irrespective of whether or not a crisis is involved. Check in with yourself using the following questions:

• Who are my neighbors? Do I feel safe enough to create a connection with them? Note: Neighbors can be anyone in your neighborhood or who can get to you quickly in an emergency.
• Do I have their contact information? How often do we communicate or connect during non-disaster times?
• What are the things that matter most to my neighbors? What do we have in common?
• How can I show up for my neighbors and in what ways can they show up for me?
• Am I still holding any hurt from past harm caused by my neighbors? If so, what do I need to heal from that situation? How can other neighbors contribute to the restoration of my sense of safety, dignity and belonging? Is there anyone in the community who can help facilitate this healing process or help mediate a resolution?

Be Persistent & Get Specifics

Sometimes you don’t always know what to ask or what to advocate for. However, surviving disasters or going through chaotic situations adds to your knowledge. Each crisis you live through teaches you something new about your needs, your people, your places, and your community. Each time you learn a bit more about what should be on your personal list of priorities or what specific questions you should ask in the future. When they tell you to wait, persist. When they tell you not to worry or concern yourself with the details of how you’ll be directly impacted during a disaster, persist. When they don’t reply to emails or return your phone calls, persist. When they tell you to trust in a plan you have no access to or input on, persist. When you are told your name has been added to a ‘special list’ of vulnerable people, persist. When you make it through the next disaster, take time to rejoice and persist as a means of protection and preparedness.

If any type of emergency plan mentions a specialized list of individuals with disabilities, try posing the following questions:

• Is my name on this list and did I provide informed consent prior to it being added?
• What type of information is made available to responders when my name is added?
• Who has access to this information (i.e. law enforcement, child protective services, adult protective services etc.)?
• Is there any additional information on the list that allows responders and community members to actually find people with disabilities when they’re at different locations (i.e. phone numbers, ID numbers, photos, addresses etc.)?
• Does the list get updated? Does it change?
• Are there designated people who will assist with finding me? If so, who are they and what is the plan if those people are not on site during a disaster?  
• Who is tasked with how the list is cultivated/built and do they have a disability justice and racial justice competency? 
• Is the list itself digital or at the very least in a fireproof place?

Perceptions Impact Protections

For people of color with disabilities, being persistent and asking critical questions can often be perceived as hostile/aggressive, non-compliant, and entitled. In addition to dealing with all the other complications involved with disasters, people of color with disabilities are regularly expected to maneuver through subjective and superficial standards of deservedness based on how well they can perform “normalcy” or “respectability” amid a crisis. This is unjust and dehumanizing. You deserve to be protected during disasters without having to justify or police how your disabled bodymind shows up in the world. You deserve safety and access to needed resources without being surveilled in the process.

Give some thought to how you can create a shield of safety for your disabled bodymind during the next disaster. Some examples may include but are not limited to:

• Create disaster specific communication cards.
• Inform your people in advance on how to best care for you in a crisis.
• Confirm if there are designated quiet rooms at a shelter and where precisely they are located.
• Save emergency contacts on your cell phone so that you can immediately reach people who care about your safety when someone perceives your presence as threatening.
• Decide who amongst your people can literally encircle you with their bodies as a physical shield to help deescalate a tense situation or safely prevent an involuntary institutionalization.

Whatever works best for you is what you should do. Remember you deserve to decide what safety feels like and what strategies are most appropriate for your bodymind during crisis-specific circumstances.

Delve into Your Dreamspace

For many people, living through disasters while disabled might be thought of as a nightmare scenario. Emergency managers quite literally plan by envisioning the worst possible outcomes and their anticipated response. But what if we allowed ourselves to go beyond the worst-case scenario to settle into a more expansive Dreamspace? Advocacy begins with first believing that you and your people can bring about necessary changes. What do those changes look, smell, feel, taste, and sound like? Enter into Britney’s dreamscape below and try envisioning the world/future you deserve to live in.

Policies Can Be Changed

If you encounter an inequitable emergency policy/plan, strive to change it before the next disaster. If you don’t have the time and/or energy to advocate for needed change, then ask other collaborators and community members to take on the challenge. Each emergency department reviews its response to recent disasters. This is done with the express intention of making adjustments and advancements where needed to more properly prepare for the next disaster. Unfortunately, this process doesn’t equate to an end to inequities. Far too frequently, people with disabilities find themselves dealing with the same pervasive problems from one disaster to the next. But remember this, policies are just words written on paper and agreed upon by decision-makers. They can and should be changed when they are ineffective at best and outright deadly at worst. Take note of the following actions when advocating for disaster-oriented policy changes:

• Collect stories and experiences from others impacted by the harm caused by inadequate emergency policies.
• Collaborate with community members to determine what type of collective actions to take next.  
• Design a variety of creative and accessible protest actions aimed at raising awareness about bad policies.
• Coordinate social media campaigns to change ineffective policies.
• File complaints against the use of bad policies.
• Build coalitions to publicly criticize and call for disability-specific resolution.
• Demand new decision-makers who are dedicated to rectifying bad policies.
• Request accountability audits and any other needed transparency measures to ensure that proposed changes are being tracked for efficacy.  

Rights Are Not Favors

Despite how programs, organizations, and people in positions of power might describe their inclusion efforts, remember that disability-inclusive disaster planning is a protected right under the Americans with Disabilities Act. It is not a personal favor that should make you feel indebted to anyone. You are entitled to the following rights during future emergencies:

• You have the right to be served in the most inclusive setting possible.
• You have the right to accessible emergency transportation.
• You have the right to an accessible shelter if you choose and you have the right to bring your service animal.
• You have the right to receive reasonable accommodations before, during, and after disasters.
• You have the right to return to your community when everyone else is allowed to return.
• You have the right to stay with your family.
• You have the right to have an advocate of your choosing present when interacting with disaster programs.
• You have the right to request additional support and services that can help you apply for, and engage with, disaster programs.  
• You have the right to request accessible information about any type of public disaster plan and your personal medical treatment plans to aid you in making informed decisions throughout each phase of a disaster.

Disability rights don’t dissolve during disasters.

Fight So that Somebody Else Can Fight

Derek Bell, father of critical race theory, former civil rights attorney, and law professor – wrote an essay titled Racial Realism. In the essay, he argues that racism is not going away. That it changes form and what we must do is fight against the latest iteration of that form. The goal is not to think you’re going to fix everything. The goal is not to think that racism will simply go away and that you must save everyone. The fight is worthwhile because if you don’t fight, everyone will be swallowed up by the toxins of injustice.  No progress would have been made if somebody before you didn’t fight.  Your job is to fight so that somebody else can fight. Your job is to continue on.

The fight may very well be exhausting. Nevertheless, when we all do our part, it creates the potential for achieving a more just world, an endeavor that is indeed worthwhile. Fight on when you can, where you can, and however you can.

So, we have to be deeply rooted in ourselves. Rooted in ourselves and our self-love. And our self-worth because we might not get it externally. But if you hold on to that sense of being rooted, we will survive. We can believe we deserve to survive because we will find a way to make it happen.” — Britney Wilson

Mutual Aid Sustains & Saves Lives

Mutual aid is anything that offers community-based ways to help each other thrive. Offerings are not just monetary, although without a doubt direct funds are vitally important. Mutual aid can be bartering, check-ins/emotional investments in each other and/or sharing of essential resources.

Crises can create care networks where we share what is needed and what we know. We share over-the-counter medications, assistive technology, and medical equipment. We share our knowledge and the lessons we’ve learned. We share culture. We share food and water. We share caregiving responsibilities. We share masks and personal protective equipment. We share messages on how to survive encounters with certain doctors, social workers, law enforcement agents, journalists, and government agencies.  We share advocacy responsibilities. We share rent money, cover mortgage payments, and assist with past due bills. We share our homes. We share our warmth during the winters and cool air during summer heatwaves.

Mutual aid can be any kind of assistance given to neighbors, community and other people in your social network that helps to keep them thriving. Mutual aid is monetary, material, meaningful and most importantly it is aligned with what is actually needed in the moment and foreseeable future. Mutual aid sustains life. Mutual aid saves lives.

Move Through Your Shame

There is no reason to be ashamed for needing help, asking for help, or needing more help than you initially anticipated. It is unfortunately built into our culture to not want to ask for help.  It is derived from the notion of individualism, capitalism, and the idea that everyone should be able to make it alone. But nobody does it alone. We quite literally can’t make it into the world and live an entire life from birth to death alone. 

Start to think of yourself as part of a community that’s always flowing in and out of resources. In mutual aid, you’re constantly pouring resources into your community and there will be times when you’re constantly receiving resources from your community. And that’s okay. That’s the way it’s supposed to be. A give and take. Resources flow back and forth, not just in one direction. 

Don’t let your feelings of shame interfere with your asking for the things that you need or impact your willingness to accept help from others. If you do, you can find yourself in a rolling state of emergency, because the shame will make you not ask for enough. When this happens, your needs will still go unfulfilled which will result in you having to ask for help again.

Assess Exactly How Much Help You Need

You will likely need more than you think because the resources requested can be exhausted sooner than you expected. This only further contributes to a feeling of shame and insecurity. Most times we ask for assistance based on what we need when we’re stable.

For example, when you are stable and have a regular paycheck, you pay your rent on time at the standard rate. However, when you are not stable and you don’t have a resource for rent, you often have to think about late fees/penalties. You also have to think about the processing fees associated with popular online fundraising platforms. These fees are subtracted from the amount you raised so set funding goals that incorporate any built-in expenses.

Track For Tax Purposes

Track everything that comes in so that you are well-positioned when it’s time to file taxes. There are different rules for donated funds versus earned funds. Talk to a tax attorney or an accountant to determine if, and how much, you will need to pay in taxes concerning any fund-raising efforts. This will help you avoid potential audits in the future or having to deal with a hefty tax bill later down the road.

Move & Organize Together

Mutual aid organizing online tends to be more effective when folks request and respond together. Relationships are rooted in community connections. Support is reciprocal and offered when someone has the capacity and resources to provide it. More often than not, the very people who receive help consistently come back to further build the community and contribute to other mutual aid requests. One of the best ways for mutual aid to work is for people in the community to be aware of each other and to prescreen each other.

As we help each other, trusting bonds are built. This trust is then channeled into other larger collective efforts outside of mutual aid. For example, policy campaigns, voting blocks, protesting police brutality against disabled bodies of color etc. This level of organizing starts with an initial willingness to embrace new people, engage in new ideas and embark on new collective actions that help us save ourselves and each other.  Mutual aid can say, “I see you.”  “I acknowledge you.”  “I believe you.”  “I support you.”

Assume that No One Else is Coming

We are the help that we’re looking for. Assume that nobody else is coming.  Depending on where you live and how your community/city is resourced, there is still a strong possibility that somebody will come. However, for planning purposes, just assume that nobody else is coming. With this in mind, gather your people and determine the most realistic strategies that will allow each of you to survive the next disaster. Collect ideas. Get several other trusted people involved and then strive to figure things out as best as you can. Give yourself and your people as many options as possible.

Every Disaster Ends

Every disaster ends, but the mutual aid community started during that period can indeed live on. Be prepared to either continue that aid or to pass it off to someone else who can continue what you started. It doesn’t have to be, and it usually shouldn’t be, a closed-ended project.  Think of it as the start of community building, rather than a one-off event, because more than likely whatever mutual aid that you start doing in a disaster is going to become part of larger community building and mutual aid on an ongoing basis.

There are always going to be people who need shelter, water, warmth, air conditioning or whatever else was coordinated during the disaster. The reason why it wasn’t available is because there’s some sort of gap somewhere in the system that is not being covered correctly. Your mutual aid efforts might’ve helped to provide that coverage. Coverage that will likely still be needed until more systemic changes are implemented.

Stay organized

Try to stay organized and keep track of your resources and information. Even if you can’t be the person to continue the work you started, keeping detailed and meticulous records can create greater ease around transferring coordinator responsibilities to the next person. Review the actions below to help you manage multifaceted mutual aid efforts:

• Create online resource databases that community members can access, edit, and update over time.
• Periodically save the resource databases offline to assist with recovery of any vital information lost during a website glitch or security breach.
• Share and save information in multiple formats (i.e. link lists, spreadsheets, word documents with headings/tables of contents/bullet points, slideshows, videos, audio recordings etc.)
• get more people involved. Try to be more of a facilitator and try to think more like a facilitator while you’re providing the aid. Always think about organizing for the future.

Examine Food Distribution, Distance & Access

Infrastructure impacts access to food. For example, the lack of infrastructural upkeep (uneven/broken concrete, inconsistent curb cuts, unattended trees/foliage, narrow paths etc.) within many neighborhoods of color impedes a person’s capacity to safely navigate sidewalks. This matters for folks with disabilities who rely on sidewalks to access public transportation to food distribution sites or when traveling to and from local grocery stores. Review the actions and questions below to help direct your advocacy around food distribution, distance, and access:

• When applying for disaster assistance, inquire about distribution processes. Can resources be delivered to folks without transportation? Or will transportation such as accessible shuttle buses or rideshare vouchers be provided?
• Organize with other people in your community to demand that local convenience stores and grocery stores improve accessibility (i.e. ramp installations, wider aisles, personal shoppers, delivery services, curbside pickups, alternatives to self-service checkouts etc.).
• Publicly ask grocery stores/food programs about services for people with disabilities.
• If comfortable, ask about assistance for your particular type of disability related needs. Is the assistance you need readily offered or do you have to call ahead each time to make arrangements for reasonable accommodations?  Is assistance guaranteed or is help based on day-to-day store capacity levels?
• Ask local food pantries if they have mobile/delivery services.
• Ask that access be clearly advertised so that others with and without disabilities are well aware of the services offered.
• Get the attention of grocery store owners/managers via social media campaigns or public posts and spread information about their access barriers as much as possible.

Food & Water Deprivation is Violence

Depriving people of access to food and water, which are human rights, is a form of violence. We live in a system of false scarcity which means that people are made to believe that certain resources are scarce when they are not.

We have the capacity within our budgets to feed people before, during and after disasters. But different decisions are made with those funds.

Within infrastructure fields, people can earn degrees with specializations in various types of infrastructure planning; urban, suburban, rural and/or tribal. Cities and communities are planned out. The problem is that many areas with people of color are planned/zoned in ways that quite literally deprive them of access to clean air, water, food, hospitals etc.

We have the capacity within our budgets to feed people before, during and after disasters. But different decisions are made with those funds.

Contrary to common misconceptions made about scarcity and the need for sacrifice, we live in an era of abundance. An era where we have more homes vacant than homeless people. An era where we have the knowledge and tools to get water and food to needed areas. An era where chain stores can provide countless cheap products but choose not to offer affordable fresh produce. An era where big corporate stores can set up shops, drive small businesses out and then proceed to relocate to more profitable neighborhoods; effectively abandoning low-resourced communities with few or no other local food options. An era where families are compelled or coerced into selling their homes or leaving their communities after disasters. Only to have those neighborhoods gentrified by more affluent individuals. An era where those newly gentrified communities are equipped with the very same infrastructure resources related to water and waste management that our people have been advocating for across generations prior to being pushed out. That is violence.

Remember, we as a country have more than we need. Take time to assess disaster statements made by government officials that cite scarcity. Ask yourself, is it really that the tools, funding and resources simply don’t exist? Or have they been designated for different communities, priorities, and interests? When demands for better food, water and waste management are consistently ignored every legislative session by local city council, alderpersons, congressional officials, state senators and governors, that is an intentional decision. All these choices are expressions of structural violence.

What & How We Grow, Matters

Community based solutions to food injustices are critically important. Community gardens are a tried-and-true solution that can be found throughout most large cities and suburban neighborhoods. However, those gardens are not truly of, and for, the community if they don’t consider the accessibility needs of disabled community members. Check out the suggestions below for ways to advocate for more accessible community gardens in your area:

• Advocate for garden organizers to check in with community members to inquire about what access needs are present and what type of accommodations will be most appropriate. 
• Request clear paths of travel. Help coordinate donations of weatherized mats and/or concrete that can be used to establish clear and safe paths of travel throughout the garden.
• Advocate for raised beds so that gardeners with certain mobility disabilities aren’t prevented from participating.
• Recommend that garden meetings be held in shaded areas with access to water, snacks and seating as needed.
• Stress the importance of home deliveries during harvest seasons.
• Identify garden guides who can assist with real-time accommodation requests as directed by individuals with disabilities (i.e. assistance with lifting heavy items, reading seed packages, locating/using equipment etc.).
• Discuss with coordinators how the garden will be protected during disasters and how it can provide food for the community throughout disasters. Will someone check the soil and crops for contamination? How will the land be decontaminated? How will food be distributed/delivered?

Section 4 – Radical Relationships

Guided by insights from Sandra Yellowhorse

Transcript – Sandra Yellow Horse

There are many different Indigenous nations within the context of the United States. Survivability within that context is about surviving and working within systems for more than 500 years of colonialism. That is a really long time to be in relationship with a very violent apparatus. A very erasing apparatus. A very destabilizing apparatus. An apparatus that has constantly infringed on Indigenous identity and sovereignty.

Keep in mind, it hasn’t just been 500 years of Indigenous disaster response. It’s been a concerted effort by colonial forces to erase lands, knowledge systems, ways of being, social relations and the way ideas are thought. It is in the interruption of diversity, disability identity and care taking. Yet within all of that has been the preservation and care taking of Indigenous knowledges despite all efforts to assimilate Indigenous people and to destroy their languages, lives, and lands.

When we think about what indigeneity can teach us about survival and living through disaster, the lessons are profoundly present when reviewing the 500 years of Indigenous histories. Those lessons are about constantly negotiating and renegotiating relationships. In this section, Sandra highlights some of those lessons to help us remain rooted even when crises make us feel untethered from one another and the earth.

Thoughtworthy Questions

In this section, think through the following questions as you read, reflect, and prepare for the next disaster:

• How do we honor the right kind of relationships that lead us toward positive outcomes?
• What are the relationships that can help lead us towards the futures we dream of and deserve?
• Which relationships lead us toward sustainability?
• How can we lean on these relationships to direct our attention throughout disaster planning?
• How do we build a system where everyone is looked after, taken care of and lives within a network of relationships?
• Where and when can we make space for remedy, rest, and restoration?

We Live In A World of Relations

Put your heart, soul, and aspirations into the pursuit of positive relationships because we live in a world of relations. Whether good, bad or indifferent, there are relationships everywhere. There are always relationships with the natural world, our food sources and all life forms. Those relationships compel us towards a principled kind of struggle. They propel us towards a principled kind of movement.

Historically, relationships have been commodified through colonized ways of thinking. For example, thinking about relationships as something to be conquered, controlled or constructed.

It’s Alright to Have an Emotional Response

It is entirely fine to have an emotional response to these issues. Despite how emotional responses are heavily criticized and negatively gendered, they are absolutely valid. They are particularly valid during disasters. It is okay to be emotionally vulnerable. Dealing with disasters, oppression, violence and marginalization is incredibly traumatizing. So, look after yourself and your people. Find sources to draw whatever kind of strength and/or tools you need to have these discussions. Stay tuned into your internal energetic/emotional frequencies. Feel your feelings. Feel freely.

A Return to Normalcy, Can be a Return to Violence

After the chaos and instability of a crisis, an eagerness to return things back to normal tends to emerge. Nevertheless, this idea of forced normativity following an emergency of any magnitude is violent. We can feel forced to put aside our human responses to the horrors we’ve witnessed, the people we’ve lost and/or the places/property destroyed during a disaster. Policies/programs that require returns to normalcy before a person is truly ready and without appropriate support, are examples of structures that are incapable of recognizing wholeness. Reject this forced return to business as usual whenever it conflicts with your embodied knowingness. When it requires your healing to be quick and convenient. When it prioritizes economic interests over those most impacted by emergency events.

Accountability is Reciprocal

You can’t have relationships without accountability. We must not only think about mutual interdependence, which are the ways we actually need one another, social systems and community. We must likewise remain mindful that tethered to this interdependence is accountability. There is responsibility embedded within our relationships. A responsibility that can strengthen our ability to rely on one another when we need each other the most. This responsibility is reciprocal and rooted in love.

Root Your Response in Radical Love

Radical love is just exactly that. It’s radical. It breaks all barriers that live across time and space. It has all the beauty of the world. It aspires, hopes, dreams and has intentions for good. 

Within crisis work, we’re often consumed by conversations of strategy, next steps, and pervasive struggles. However, disabled artists of color are also engaging in conversations around worldbuilding, reimagination, freedom and love. Such visionary work allows us to stretch out even when cornered by crises. It offers needed spaces that can be filled with goodness and belonging. Filled with all the things we value and treasure.

This love and sense of belonging is transformative. It is a space on the margins of the margins to really have something special. It creates an important value in having a space to be yourself, cared for, recognized, understood, and held. A space to be rooted in love.

Emergency Interventions Still Require Invitation/Consent

When planning an emergency intervention of any sort, recognize that we are all different and that we have different social and political contexts. We have different histories.  We may still be working and operating within the same overarching system, but that doesn’t mean our approaches or anticipated outcomes are the same.

Have open conversations with your collaborators to understand the value of compromise. By doing so, you can move with multiple perspectives in mind. This can help to avoid replicating toxic power dynamics or a one size fits all type of intervention/singular solution. When engaged in cross-movement organizing, do not reenact and re-live oppressive conditions by giving unwelcome advice or critiques about how other marginalized communities handle crises, pressure, and harm. Instead, acknowledge the sovereignty and self-determination of those you build alongside.

You Are Not Entirely Alone

There is very real pain, isolation and loneliness that comes with living through crises. There is very real anguish associated with experiencing abandonment. There is very real fear of being forgotten. There is very real frustration that builds after being repeatedly ignored and insulted.

Know that there are others out there who feel the same way. Who are living through similar conditions. Who just like you, deserve so much better than the cards they’ve been dealt. In this way, know that you are not entirely alone.  Even if it feels that way.  Even through times when you feel the most disconnection and isolation. You still have the earth. You still have the sky. You still have sunbeams and moonlight. You still have the ancestors. You still have the histories of your people. You have the teachings of your people, even if you are not in relation with those lessons yet. Those offerings are waiting for you, because someone in the past put them there for you. It’s just a matter of finding a path to them.

We Have Inherent Rights

The capacity to thrive, live well and with dignity is an inherent right of all people. This is not a government right that must be bestowed upon you. It is inherent. Furthermore, the natural world and its bodies of water have this inherent right as well. The ways humans cause and contribute to disasters directly impact the land, the water, the animals, and all other life forms. We must therefore commit ourselves to a practice of care. A collective care practice for ourselves, the land, water, animals, and all other life forms. Use this inherited capacity to care for your people and our planet.

Sandra’s Love Message

“For people who are living in crisis, there is still love there. There is a radical love brewing.  A love that is thinking about you, holding you close to heart and planning in whatever way that can be planned.

You are not forgotten. You are not alone. There is a community who is doing something.  A community Who is trying their hardest. Even though the struggle seems so big, like it has so many arms, like an overwhelming ocean or like we sometimes can’t imagine a future from within it; remember that our people are doing the work. There are people coming together and loving each other despite all odds and hardships. People who are trying to think of a way to create a world built out of this despair so that things can be different.

That is the best we can do. We will continue the fight, to try, push back, build, and imagine forward. We will continue to hold each other during the times when some of us can’t imagine a future from where we are. During the times that are really difficult and lonely.

Be yourself and continue to live in the power of who you are. Know that there is a community out there. If you are not surrounded by community right now, we are keeping you close to heart and hope that you find us and that we find you.” – Sandra Yellowhorse

About Sandra

Sandra Yellowhorse is Towering House People born for the French of the Diné Nation. She is a grateful guest on the lands of Ngāti Whatua in New Zealand where she completed her PhD at Te Puna Wānanga, School of Māori and Indigenous Education at the University of Auckland. Sandra’s work is committed to Diné storytelling which examines philosophies of ‘disability’ emergent in land-based pedagogy, ancestral narratives, and story. She supports the revitalization of Diné land-based knowledge and oral histories to advance teachings of relationality and belonging, to care for all of our diverse relations.

Back to top

Section 5 – Just Response & Recovery

Guided by insights from Alessandra Jerolleman

Transcript – Alessandra Jerolleman

During disaster response and recovery, people’s decisions are often constrained. This can stem from temporary resource limitations caused by chaotic large scale or complex high intensity emergencies. Regularly it’s a result of a failure to prioritize people’s rights and dignity. Sometimes it is the cruel calculation that counts the most marginalized as ‘acceptable losses’ or low-resourced communities as sacrifice zones.

Nevertheless, our people deserve so much more. We deserve responses and long-term recovery that is just and reparative. In this section, Alessandra offers us a range of lessons to use while navigating disaster response, recovery, mitigation, and oppression.

Thoughtworthy Questions

In this section, think through the following questions as you read, reflect and prepare for the next disaster:

• Is the notion of scarcity even real or is it simply another way to rationalize racism and ableism?
• What would it help, cost or take to just render care and safety to everyone?
• Assess the parameters that are used to determine who receives access to care and services. Are they appropriate?  Are they just?  Are they discriminatory?
• How can our people have their basic needs met, their human rights respected and more importantly, their self-efficacy recognized?
• How can we preserve our people’s ability to remain in control of their life and their circumstances as much as possible?

Lessons Learned About Response and Recovery

Consider the following lessons gathered from, and inspired by, Alessandra to help guide how you and your community can respond to, and recover from, future disasters.

Heed the Hazards

• Talk to elders in the community to learn about the history of relevant hazards and any patterns of harm resulting from interventions imposed on the community by external actors.
• Review the hazard mitigation plan for the county or city, which are often publicly available.
• File a Freedom of Information (FOI) request if necessary to receive access to crucial disaster plans concerning the public.
• Ask authorizing agencies about the inclusion, or exclusion, of people with disabilities throughout emergency plans. For hurricanes, there should be some evacuation plan when risks exceed certain thresholds. There should also be plans for shelter in place for rapid onset events where evacuation is not possible. This is critical as hurricanes have intensified more quickly in recent years.
• Assess mitigation measures to ensure communities of color, rural areas, and tribal nations are not overlooked and underfunded concerning the distribution of risk reduction resources. 
• Use FEMA’s interactive hazard mitigation maps to get a sense of present and future risks in the area.
• Use environmental clues and free online mapping tools to create a community-designed map of potential risks. For example, nearby rivers can pose a flood risk, air pollution from landfills/highways/factories can intensify during extreme weather conditions, a lack of green infrastructure in urban areas can increase flooding etc.

Keep these additional actions in mind to heed future hazards. 

Strive to Stay with Your People

Evacuations can separate people from their families, parents from their children and disconnect vital care networks. Remember, you should always have the option to stay in community and be able to support your people. If you choose to physically stay in your community, please be aware of your risks, prepare to do so as safely as possible, and have a plan to leave if it turns out that you cannot safely stay.

A common occurrence during disaster recovery is dispersal. Dispersal impacts the ability of people to access their support networks. Some of that dispersal is also directly caused by government programs that fail to provide reliable, sufficient, accessible, and convenient support. For example, many temporary housing assistance programs don’t guarantee that you will be in the same geographic space with your neighbors or your close family, while other programs provide separate accommodations for those with medical needs or who require specific accessibility assistance. Often programs/benefits are structured in a first come first served manner. A practice that repeatedly leaves people with disabilities, both metaphorically and literally, at the back of the line. Or, it can result in disabled folks being separated from those they care for and who care for them. Stay with your people whenever possible. If for any reason you become separated, maintain updated information on everyone’s location, wellbeing, access to vital resources and use any available services/ trusted connections to reunite your people as quickly as possible.

Don’t Forget About Your Folks in Facilities

Loved ones in jails, prisons, nursing homes, psychiatric facilities, juvenile detention centers, ICE detention centers and group homes must not be forgotten during crises. Heat waves, cold snaps, pandemics, and any number of other disastrous events can be even more life threatening for people with disabilities within carceral/facility settings. Heightened risk can be due to poor insulation, lack of air conditioning/updated ventilation systems, effective evacuation/shelter-in-place protocols etc.

Review and apply the following two actions as needed to protect and advocate alongside people of color with disabilities in carceral/facility settings:

• Organize across movements to increase community-based services so that facilities are no longer the only care options available.
• Reach out to public health officials and ask them what the requirements are in the state related to disaster management across various types of facilities.

Some people are in particular facilities because it is the only choice for financial, insurance or geographic reasons. Others have some measure of choice. In either case, the following questions should be considered:

• Has deinstitutionalization and abolition been considered as means of hazard mitigation?
• How many people at the facility were injured, killed, or left behind during previous emergencies?
• Does the facility have geographic/hazard-specific plans for emergencies? How successful were those plans during past disasters? What improvements have been made?
• Has everyone in the facility been allowed to contribute and review the plans?
• Have those living in the facility been trained on the plans?
• Does the facility keep a generator, additional food, and other resources on site?
• Does the facility provide support to its employees and their families so that they can reasonably stay and continue to assist disabled residents?
• What if any steps have officials taken to secure the building? 
• Are there shelter-in-place/safe rooms on site?
• Have they put in newer wind-resistant windows?
• Has there been some landscaping done for wildfire protection?

Notice When Resilience is Weaponized

It is unjust to suggest that people should be able to repeatedly deal with the inequities that are thrown at them and be prepared to continuously adjust/adapt. All the while, being discouraged from asking why problems are being thrown at them in the first place.  People are treated as though they shouldn’t question the system or the larger patterns even when the structures are not there to support their resilience. This is significant whether it’s systemic issues around racialized differences in property values or access to care related to disparities in gender, race and sexuality. All of which impacts both people of color and people of color with disabilities.

When officials talk about resilience, they are generally not thinking about people but rather metrics. These metrics don’t take individual people into account. For example, in recovery, the number of homes that are rebuilt and have an occupancy permit or are inhabited again is a metric. That metric doesn’t take into account who lives in that home, property values, If home sales are going back up, or if pre-disaster residents are moving back. Those metrics also may not account for violations of renters’ rights, gentrification, displacement, or households who simply choose to relocate.

Historical Context

As discussed in previous sections, food apartheid for example is a problem that impedes disaster preparedness, response, and recovery for communities of color. Those areas met with food apartheid tend to correlate with the communities historically impacted by redlining. Furthermore, those very communities continue to endure more frequent exposure to environmental racism and hazardous conditions.

In America, resources are often based on population. There is a direct connection between the provision of certain services and the taxes that are drawn from the surrounding population. That funding contributes to local infrastructure as well as schools, libraries, and community centers – all of which typically serve as disaster shelters. So, the system is built in such a way that you will always have separate and unequal disaster resources from community to community based largely upon the racial and socioeconomic composition of that community.

Current Context

Programs and insurance policies tend to do better at recognizing the rights of people who own land and homes. Property owners pay property taxes and are recognized as people who should have a voice in shaping recovery processes. Nevertheless, we know that belonging to a community is more than just home ownership. Inequities in education, employment, healthcare, transportation, and barriers to securing community-based supports make homeownership even more difficult for people of color with disabilities to attain. Moreover, asset restrictions for people with disabilities who receive Social Security Disability Insurance has created significant barriers to home ownership, marriage, and the ability to save for diverse disasters.

Some disaster assistance programs and insurance plans expect applicants to have enough money on hand to cover weeks, months and even years of expenses. A problem that is only exacerbated by fluctuating property values and rental rates. In essence, renters are effectively priced out and homeowners are routinely pushed out.

Future Context

When advocating for reparations and better resourcing, consider that it’s not a favor, it’s not charity, it’s not even some sort of “unearned entitlement.” It is a redress for the creation and continuance of harm and disparities. This is key because the way resources were allocated to begin with was neither equal nor equitable. Disaster recovery is riddled with administrative delays, bureaucratic violence, and long-standing resource restrictions. Our people deserve better, and an outstanding debt is owed in the form of community-approved reparations.  

Alessandra’s Love Message

“You are a critically important part of the community and social network.  Your contributions should be respected, valued and your place in the community honored each day. When there is any kind of disaster, we all stand to learn from each other and must support each other. The systems that we have in place should support, not sever, works of care, love, and mutual aid networks.” — Alessandra Jerolleman 

About Alessandra

Alessandra Jerolleman is a Latin-American woman, mother, community advocate and applied scholar who calls Louisiana home. She has been partnering with communities in support of disaster justice, equitable recovery, and just climate adaptation for the past two decades. Alessandra is an attorney, professor, and author of Disaster Recovery Through the Lens of Justice.

Back to top

Section 6 – Grief, Collective Action, and Narrative Strategy

Guided by insights from Malkia Devich-Cyril

Transcript – Malkia Devich-Cyril

Death lurks in the shadows of disaster. Not because death is a natural derivative of disaster, but because of willful negligence. Decisions made concerning how we prepare for, respond to, and recover from disasters are not inevitable. They are choices that determine which communities will be protected, who will receive assistance and if/when people are allowed to return and rebuild.

Understanding death in relation to disaster management is seminal to changing national narratives that frame disabled people of color as “acceptable losses.” Depictions that position our communities as unworthy. Stories that stoke fear, division, and violence. Stigmas and misleading statistics that increase surveillance and decrease safety. Narratives that narrow the scope of our very survival. In this section, Malkia helps us to understand the lingering impact of such narratives and the importance of Media Justice.

Thoughtworthy Questions

Lessons for Grief, Surveillance & Communication

Consider the following lessons gathered from, and inspired by, Malkia to help guide how you navigate grief, surveillance, and crisis communications.

Massive Disasters are Mass Death Events

Whether the disaster is a pandemic, an earthquake, mass shooting or a weather-related emergency, a significant amount of loss occurs. Anything that takes multiple lives or destroys a people’s way of life, is a type of loss. Mass death is also the experience of watching Black people die on television over and over again. Those are mass death events because of the way we experience them.

Attend to Sorrow

The consequences of unattended sorrow in Black communities are also political.  Unattended sorrow can de-mobilize populations. It can de-mobilize progressive basis. It can decelerate action. Grief is different from sorrow. Sorrow is an emotion. Grief is an experience. Grief can take many forms. Unattended sorrow is toxic. It is painful. It de-mobilizes and decelerates which isn’t necessarily what we need during rapid responses to disaster. When our people are experiencing extreme loss and death, we need to accelerate and mobilize to save our own lives.

While we simultaneously strive to stay alive and liberate our people from carceral settings, advocate for free government-funded grief counseling services. Government entities are not absolved of responsibility concerning the care/healing of the populations habitually harmed by government-funded disaster inequities. Such services should be made available in public schools, public hospitals, prisons and jails, nursing homes, group homes and any other place where people of Color with disabilities are disproportionately represented.

Death is Disproportionate

Recognize that death is disproportionate. In the context of a disaster, all lives are not taken equally. For instance, people who are houseless and those of us who have fewer resources are far more likely to lose our own lives or witness the loss of those we love.

There’s a racial burden to death directly connected to disadvantage. Poor people of color with disabilities are disproportionately on the receiving end of harm, loss, and death during disasters. Death isn’t simply a consequence of disadvantage; it is also a cause of disadvantage. The disproportionate mortality that we face as black people, as disabled people, as poor people also cause disproportionate grief. This creates what is typically a painful collective experience or shared experience of loss and becomes a source of suffering.

Transform Collective Grief into Collective Action

It is our job to transform collective grief into collective action. Community organizing and our understanding of it should consistently evolve in ways that incorporate this transformation. Time, place, and people help us to make accurate assessments of our relationships to power and material conditions. During crises, those conditions consist of mass death and mass grief. Interventions, approaches, and responses as a movement to those conditions should be to better understand the nature of grief. This understanding should be incorporated into our leadership development models, advocacy campaigns and narrative strategies. In doing so, we usher in true transformations that tend to the roots of our pain and sorrow. Reflect on the following practices when working to transform grief into action:

• Collectivize individual experiences of grief. Organize to help transform experiences of mass grief, which is not necessarily collective. Just because two people experience something at the same time, does not mean that they see themselves as experiencing it together. That’s an organizing process. If we can move with grief in our hands and move deliberately in our use of grief as fuel, then we can use our shared experiences of grief to save the world. To save the planet. To save ourselves.
• Organize in the spaces where people go to deal with their grief. Grief is a vehicle for organizing. Go to faith-based institutions, clubs, bars, support groups etc. engage and show up alongside your people when grief is present. Don’t ignore their grief.  Don’t force folks to stuff their pain down. Don’t hide when grief enters the room. Embrace the truth of their vastly painful and traumatic experiences of loss to gradually transform that energy into proactiveness, into agency, into action.

Where There Is Chaos, There Is Control

Anytime there’s a disaster, it is an opportunity for the state to come in and increase the level of authoritarianism. For example, population control is primarily wielded by a heightened police presence, curfews and/or National Guard mobilization. Other forms of surveillance may include tracking via public/private cameras or data collection through disaster assistance apps/programs. Anytime there is chaos, there’s an opportunity for authoritarians to come in and take power. That said, it is also an opportunity for communities to come in and take power. To take back control of our communities. So, chaos works both ways. It’s a reorganization. It’s a moment when things are not as they were. And there’s an opportunity for our people to show up and make a difference. Pose the following questions to your collaborators to help them think through instability during disasters:

• How do many different small networks of care become linked with one another?
• How do we provide safety for our communities during disasters?
• How do we prevent violence from the state and violence from within the community?
• Who has the resources that are most needed amongst those in your community?
• What is needed to centralize those resources in your community prior to a disaster?

Proximity to Our People, Is Proximity to Power

Whenever possible, make an effort to get to know the people in your neighborhood. Exchange phone numbers, periodically check in on one another, build a relationship. If in-person connection is not the most accessible means of meeting your neighbors, then try more localized means of online organizing. For example, coordinate connections using sites that allow you to virtually join local neighborhood groups.

Take note of the following points to help direct your attention toward the power present amongst the people nearest to you:

• Build an awareness of the people around you such as neighbors and others nearby. There is a power that emanates from knowing who is near and everyone’s respective capacity levels.
• Know your geographic area. There is power in knowing where you are now, who was present before you arrived and what might be possible in the future if community members ban together.
• Map out escape routes and entry points to better understand the movement of people and resources.
• Think bold, think bigger. How can we organize the people in our local areas both in-person and online?
• Teach the children. The next generation should always have access to the wisdom gained from our histories of loss and survival.
• Start to physically accumulate resources within the community such as water, food, oil, solar panels, tools, weapons etc.

Communication Is Always Critical

We tend to wait until the crisis to intervene, but the intervention is most effective prior to the crisis. The narratives that lead outside of crises, will also lead in crises. If we are saturated in dominant narratives about the undeserving, about Black people who don’t know how to manage resources, about the acceptable losses, about the lazy and entitled; then these false narratives will be readily referred to during crises. They will be used to perpetually justify future disaster decisions that directly harm multi-marginalized individuals such as people of color with disabilities.

Remember, images and ideas create mental maps that guide our values, the policies we approve, the politicians we elect, the services we believe we deserve etc. in a disaster, just like in a war, when you lose the power of communication, you lose everything. You lose the ability to coordinate, defend yourself and to remain abreast of what is happening in other similar communities. With this in mind, our ability to control our communication systems is inherent to our survival. It is essential to our survival, our ability to shape/control narratives and our ability to shape and control critical resource infrastructure.

Concentrate on communication when planning for the next crisis. Help shape the narrative and cultural strategies used during future disasters to more fully reflect the priorities, needs and interests of disabled folks of color.

Challenge Cuts to Lifelines

Government programs that provide broadband services and cell phones are constantly under the threat of being defunded. Programs that give poor people and those in rural areas broadband access are lifelines during disasters. They provide access to telehealth during pandemics. They provide invaluable internet connections that allow for real-time updates during crises. They help families find each other and locate shelters/safe zones. Broadband access issues disproportionately impact Black, immigrant, Indigenous and poor communities.

The Internet has become essential to life. It is not just an information system; it is also one of the most effective ways to organize. It is the way we connect. It is the way we develop mutual aid networks.

Malkia’s Love Message

“We are all going to lose what we love, every single one of us will go through either our own private disasters or a public disaster. An individual disaster or, a collective disaster.  In any case, anything you love will be lost, that’s the nature of life. And yet, there’s no life without that love. We can prepare as best as we can to meet the world. To understand the conditions we’re facing. To make accurate assessments. To study and learn. But, at the end of the day, life is unpredictable. At the end of the day, we have no control. All the control we think we have is very much an illusion. The more we can understand that the more we can let go and face into what is happening right now.

Be as present as possible. Even inside of tremendous loss. Even when you lose multiple people in a few years as I did. When you lose the person or people you love the most in the entire world, as I have. And yet, you still find that the sunrises and that the wind feels beautiful on your face and that there are babies who need your support. There’s life inside of life. There is life inside of death.

Perhaps in the context of loss is when we discover our most tender selves. Maybe it’s in the context of loss that we discover our greatest bravery. Maybe it’s in the context of loss and in the context of vulnerability. In the context of recognizing that we need help. Maybe in those spaces is where we actually discover our greatest strength.

“Courage from a feminist perspective is the ability to ask for and provide help. It is the ability to have and receive empathy. This is what courage is. I think what happens when we are tender is that we become feminists. We can become something greater than all the losses. Allow space and time for this. Allow for loss. Loss of land. Loss of language. Loss of liberty. Loss of body parts. Loss of everything, anything, life, health. Let it make you more of who you are.” — Malkia Devich-Cyril

About Malkia

Malkia Devich Cyril (they/them) is a writer, public speaker, and award-winning activist on issues of digital rights, narrative power, Black liberation, and collective grief. Malkia is the founding and former executive director of Media Justice — a national hub boldly advancing racial justice, rights, and dignity in a digital age. After more than 20 years of media justice leadership, Devich Cyril is now the Founder-in-Residence at Media Justice, a Leading Edge Fellow, and a Strategist-in-Residence at the Narrative Initiative exploring public narratives and movement building strategies on grief and race. Malkia is currently authoring a book of personal essays on the radical power and potential of Black grief. Follow them at @radicalloss on Instagram.

Back to top

Conclusion: A Collective Dream 

By Kelechi Ubozoh

YOU are a dream realized. I meet you with splendor and joy.

“We know the nightmare, so what is the dream?” — Kwesi Chappin

Knowing that joy and grief are cousins. I hold both truths and gently rock you to a lullaby, a dream, a portal to co-create a dreamscape. 

In this place we create, let us remember the wisdom of our ancestors who did more than survive, whose DNA passes on ancestral gifts, knowledge and care for each other. Our plant ancestors who energetically shelter us from the constant storm that is an ableist, white supremacist lie. May we remember the truth, and that these words give you nourishment in times of despair.

Our dreamscape is made for us, by us.

Take this dream space as seeds to plant in your communities, across the world and light up the universe…

May you be nourished.

May you be hydrated.

May you be held in a way that feels just right to you and your body.

May you reclaim your ancestral teachings, traditions, and knowledge.

May you remember your people and may they remember you.

May you be a good neighbor and may your neighbors be good to you.

May you experience responsiveness in place of reactiveness.

May the solutions to harm be of your creation and held by many.

May you rest.

May you know love and give love.

May your decisions be honored.

May your autonomy be respected.

May your human rights be restored.

May your belly be full of food and laughter.

May your heart expand.

May your body feel cared for at all ages and stages of your journey.

May you allow yourself to feel your emotions and may your emotions move through.

May you liberate yourself from generational wounds.

May you be the salve.

May you rest.

May you rest.

May you rest.

May you let yourself receive.

May you know a deep pleasure. 

May you live in dignity.

May you be safe. 

May your physical container experience release and magic. 

May you remember that your story is part of a universal fabric and the thread that belongs to you belongs to the collective.

May you release whatever in the past is no longer serving you and, in the moments, when this is not possible, may you be kind to the parts of yourself that do not yet know the way.

May you get lost as much as you need and may you return to your path.

May you continue to light the world and even through inner and external darkness, remember that you are whole. 

May whatever resonate from these dreams etch into your mortal fabric and may you release anything that is not aligned.

May the dream we build become the groundwork that includes all of us. 

So much love to this collective.

About Kelechi

Kelechi Ubozoh is a Nigerian American writer, mental health advocate, suicide attempt survivor and psychiatric survivor. She is the author of We’ve Been Too Patient: Voices from Radical Mental Health with LD Green. She works as a liberatory coach in Oakland, California who dreams Afrofuturistic dreams. Learn more about Kelechi at kelechiubozoh.com.

Acknowledgements

Sincere appreciations to all of the remarkable people who contributed to this guidebook. Thank you for your commitment, candor, and care. This offering was sculpted out of your courage and brilliance.

Gratitude to Thomas Reid of 1217 Compound for providing exceptional production work on each of the audio companions. Thank you to the Adult Advocacy Centers for funding the audio companions and the guidebook’s beautiful logo.

Everlasting gratitude to all those who came before me, have shown up beside me and who will continue this work after me. To the Black Feminist thinkers who orient my mind, I am forever thankful. To the disabled writers of color who taught me new ways of maneuvering through the world, I am forever thankful. To the LGBTQIA creators whose work reflects love in every light, I am forever thankful. To be enfolded in such lineages is a truly invaluable gift.

Lastly, a deep-seated expression of gratefulness to all of my people. All of the friends and family who propelled me forward with your generous offers of support via tender talk-throughs, copy-editing, visual reviews, listening sessions and raucous laughter. Your love is imprinted on every inch of my being.

In Love & Service,

Justice

About Justice

Justice Shorter is a skilled organizer/facilitator, Disability Justice amplifier and senior advisor on issues at the intersection of race, disability, gender, health, climate, and crises. She is a national expert on disability inclusive disaster protections, emergency management and humanitarian crises/conflicts.  As a curator and composer, she has orchestrated immersive training experiences for thousands of participants worldwide. As a strategist and dreamscaper, she has worked with countless organizations to meaningfully and measurably enhance their equity efforts. In 2023, Justice formed SeededGround, an agency devoted to content creation that centers people of color with disabilities. Determined to sow justice and harvest dreams, SeededGround projects are intentionally designed in ways that are imaginative and intersectional. Her work is lovingly wedded to worldbuilding our collective liberation into fruition.