What’s Up WID: Whole Community Disaster Preparedness & Response Transcripts

Nicholas Love:
Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability biweekly podcast where we discuss what’s up in the disability community across the globe. My name is Nicholas Love, I’m honored to be a director at The World Institute On Disability. Today’s guest is Dawn Skaggs, which emergency disaster and climate resilience specialist. She is an international subject matter expert, consultant, and speaker on disability in community includes of emergency, planning, preparation, response and recovery. For over two decades, she has provided training and presentations at hundreds of events locally, nationally, and international audiences including radio, television, and university platforms. Her written publications include over a dozen articles on inclusive community emergency management.

Nicholas Love:
On today’s episode, Dawn and I will be chatting about whole community disaster, preparation and response for people with disabilities. I’m excited to have you as a guest today Dawn, how are you?

Dawn Skaggs:
I’m great. Thank you, Nicholas. I’m really pleased to be here and spend a few minutes exploring how we move forward towards improving the experiences of people with disabilities, both in steady state and at disaster events.

Nicholas Love:
Wonderful. Let’s just get right into it. As you know, during both natural and man-made disasters, people with disabilities in marginalized communities make up the majority of fatalities. How can government adequately prepare for disasters to better protect these communities?

Dawn Skaggs:
Nicholas, it can actually be capsuled in four words; planning with and not for, is the way that they adequately plan to better protect the communities that are currently not being adequately cared for. It’s the role of the government to facilitate preparedness for all people. So there’s multiple levels of government, each with its own roles and responsibilities but the challenge is that governments cannot meet the needs of all the people in a disaster. It doesn’t mean that the government should not plan for all of the people, it means they need to plan differently than they’ve been planning. Time and time again through multiple disasters, we’ve seen that governments must plan with the people with disabilities and with the whole community. The government agencies then become the planning facilitators in conjunction with their community.

Dawn Skaggs:
The government’s role is, in adequately preparing for disasters to best protect the communities is to use the skills and expertise that exists already within the community. People with disabilities know their needs and their capacity, but the government does not. Governments need to prepare jointly together with and not for individuals with a disability by partnering jointly. When they do this, it accomplishes three goals that support fully inclusive preparedness planning. The first one is that individuals, groups, and agencies from the disability community are able to inform and direct the planning and the response and the recovery, so that it is inclusive. So that there isn’t something being done for or about them, it’s being done with them because they have that expertise. They need that seat at the table.

Dawn Skaggs:
The second impact is that governments have the access to skills and assets of the disability community. And using that, they can align their planning with what works on a daily basis, rather than what they think is going to work in a disaster. In a disaster, if we want to be most effective and most protective of the individuals in our community, we need to be addressing what’s working on a daily basis? Where are those skills and resources? How can those be leveraged within their existent system to really create a true partnership where the skills are utilized in the way that they need to be, to maximize on that capacity? And the third impact is that, the governments can address real gaps in planning, rather than their perceived gaps and perceptions of the needs of the disability community. So really in essence, if the government want to truly, adequately prepare for disasters to maximally protect their communities and the individuals with disability in their communities, they really need to join forces together.

Dawn Skaggs:
Beyond the traditional planning in silos where emergency managers and planners are expected to know what needs to be done. They need to open those doors and really become the facilitators of the activities together with and under the direction of the people that are really going to be impacted. Otherwise, they’re not going to be able to really effectively meet those needs and the plans are going to fall short every time because they don’t know what those needs are. They don’t know how those needs are met on a daily basis and they don’t know how to integrate that into the disaster scenario.

Nicholas Love:
Thank you, Dawn. What I’m hearing while you’re talking, I’m hearing the independent living battle cry. Nothing about us without us. That’s so simple, yet, here we are. Dawn, disabled people with multiply marginalized identities such as people of color, LGBTQ+, women, and those living in poverty, are disproportionately effected by disasters. How can we create a whole community, inclusive culture, so that these groups are not forgotten, ignored, and are included during the disaster preparation response and recovery? You talked about bringing us to the table, how do we do that?

Dawn Skaggs:
As I mentioned in the previous question, the use of the whole community approach really requires the representation of all facets of the community to include those with a disability. And when I say a seat at the table, I don’t mean literally a seat at the table, I mean a voice. It’s possible to be invited to the conversation and really not be heard. So when we’re talking about inclusive whole community approach, it really requires a public, private, personal partnership that’s critical. And the basis of that is mutually honoring and respecting the voices that do come to the table. So that they’re not just voices, but they are contributors to the plan. And that’s not an easy thing to do. It’s easy to say we all need to come to the table, it’s easy to say everybody needs to be represented. But it’s not a touchy, feely, let’s all feel good together process. It can be very messy and it can be less than linear.

Dawn Skaggs:
The struggle comes when we all come to the table with our agenda. With an expectation of the other members of the table and we really need to transform that into a paradigm shift of everyone coming to the table for a mutually agreed goal and mission and that being the maximum health and safety and survival of the community members themselves. That can’t be done in a response. That can’t actually be started in the preparedness conversation, that begins before any of those things come to the table. That begins when the community manager engages with the community. When the agencies and the government agencies really participate as community members, not as community directors or managers or someone separate. Integrating into the whole community strategy includes truly that; integrating. Everyone’s bringing strength and everybody’s bringing needs, including the government agencies and we all need to be coming to this whole community strategy with the goal of creating an inclusive culture where there is equitable and equal respect and contributions and skills and expertise.

Dawn Skaggs:
That has a foundation really in a true paradigm shift and what that looks like is the actual self responsibility of each and every community member to acknowledge they are their own first responder. They are their own first source of support. After that, are their friends and family and neighbors and that conversation can only really be had when the people coming to the table, the representation coming to the table, represents personally prepared community members. Personal preparedness is not something that comes easily, naturally, or without fear to a lot of us. And there’s been study after study that demonstrates individuals with a disability most often are not adequately prepared. And even when they feel they might be adequately prepared, the reality is they have not had the supports, they do not have the resources to really, truly come personally prepared. Unless the community members are personally prepared, when they come to engage with the government and NGO and VOAD agencies, they don’t have that same foundation of being able to communicate and share and exchange expertise with the government agencies that will be able to make a difference.

Dawn Skaggs:
So taking on that sense of my safety and my preparedness is my responsibility is fundamental to whole community engagement. The reality is, as much as they would like to, as much as we have been taught that, government agencies don’t have it all together. Our job is not to wait for the government agency. Our job is to assess our own personal needs and our own personal assets and access those first and foremost to say, this is me, this is my life, and I’m taking responsibility for it. That then carries through to a second phase of people feeling safe and empowered to participate. And what happens when that occurs is that individuals with a disability, representatives from various community groups, service providers, come to the table without that expectation of someone else solving their problem. They come with the expectation of, I have an expertise and an area of knowledge that you don’t have and we need to put those together so that we can have the same goal and we can collaborate on an equal and equitable and fair playing ground.

Dawn Skaggs:
And that really, Nicholas, is the paradigm shift from our traditional approach of expecting the government to care for us, to us coming as empowered contributors to our community with an incredible set of expertise that doesn’t exist if we are not at the table and we are not sharing and we not being effective in partnering with the government agency for that same goal. On the flip side, it is the government’s responsibility to keep that door open. To make sure that the table is a playing field, to make sure that there is the expertise that’s being brought to the table, is honored and acted upon and not just put in some meeting notes or put in a plan and put on the shelf. That there is truly a building of an equitable partnership and relationship. That relationship has to proceed the partnership in order to garner that mutual respect and understanding that individuals with a disability, whether it’s for themselves, their family, their neighborhood, or their jurisdiction. As a representative, they have something to contribute and they’re in a place to be able to contribute that as a participating partner.

Dawn Skaggs:
And that those areas of expertise prove to be beneficial to the grander scheme. They’re not layered on, but they’re embedded within the plan itself. And they are then embedded, after the plan, embedded into the community culture. So building that sense of, I have something of an expertise that I can help myself and help others for every individual is really critical. It prepares an avenue to participation that really ensures inclusion because it’s not something we’re doing for a population group, but it becomes the way that we operate on a daily basis, which is then replicated in how we operate in a disaster scenario. So really looking at it from the group up, rather than as a trickle down effect, embeds that inclusive culture into not only our plans, but our thought process and our actions.

Nicholas Love:
Absolutely wonderful, Dawn. I mean, the self empowerment, being able to embrace change and that change then affecting all. The winter storm is earlier this year in Texas wreaked havoc on the disability community, marginalized communities, and communities at large, leaving millions without power, gas, or water for several days. As a Texas resident, what are your thoughts about the lack of disaster preparation prior to this storm? And if you could also, as part of that, could you tell me what happened to the people with disabilities during the storm specifically?

Dawn Skaggs:
So Nicholas, to the first part of your question, as a Texas resident, I was personally impacted and that changes the experience of a disaster. When it’s about you and your home, it’s different than when it’s about someone else. So speaking to that as a Texas resident, I would say that what I observed predominantly was what can be capsuled as universal impact. In that particular storm and that particular disaster, everyone was impacted. Nobody had a preferred way to do things because when there were no roads, there were no roads. There was no transportation, there was no electricity, there was no water. And it put things on a very level playing field. So although public and private partnerships as I discussed in the previous question and their role in emergency preparedness are important. What we saw is, unfortunately something that is difficult to navigate and even more difficult to avoid. We’re all tasked with an all hazards planning approach. However in reality, there are limited resources. And hazards are always prioritized based on probability.

Dawn Skaggs:
When you’re talking about a storm that happens every 100 years or so, it doesn’t get prioritized. And often, what that means is, it doesn’t get planned for because in Texas, we’re thinking about the hurricanes and the tornadoes and the other natural disasters. Not thinking about a storm that shuts down entire cities instantaneously. So this only emphasizes the need for the disability community to be personally prepared and to be collaborating with their government agencies. The more those relationships are developed in advance, the more we can navigate where those gaps happen because those gaps are going to happen. No jurisdictions can plan for all hazards all the time in all ways for all people. It’s not a realistic expectation. So the disaster preparedness was lacking because we all followed the standard prioritization strategy and those things are going to happen.

Dawn Skaggs:
Emphasizing the need for those partnerships and relationships. The takeaway lesson from this is that disasters have a universal impact to individuals with a disability and the need for self preparedness and self advocacy regarding their needs cannot be overstated. We saw individuals in institutions who were stranded in the institutions, as were the workers. When the roads shut down, they shut down very quickly and they shut down totally and completely. So individuals in an institution who were reliant on other people for their sustainability, for their preparedness, for their wellbeing, where all aspects of their life were incredibly impacted because those individuals who typically, in steady state, provided those services and that support had other priorities as well. They had their own lives. They had their own homes and their own families and they could not be there in the way that the individuals in the institutions required them to be.

Dawn Skaggs:
That resulted in second and third level tragedies where individuals were missing medication, individuals were going without water. And with no flowing water, there was no proper sewage and all of those things compounded to impact. Not to mention, this happened during the COVID crisis. And that had a tremendous impact because we’re not talking about people who came into the storm with resilience. They came into the storm coming from a steady state that they were comfortable with where they were getting the support they needed. All of the resources were taxed already and then to add to the storm, the personal resilience and the personal, institutional, organizational, and government resources weren’t there. Similarly, for individuals with a disability who were living independently in the community. They did not have access to the resources that they were typically reliant on. Individuals who did not leave their home were reliant on meal delivery. If they did not have those personal preparedness strategies in place already, they went hungry because there wasn’t the food there.

Dawn Skaggs:
Only serving to emphasize again, Nicholas, the importance of each individual preparing to the best of their ability. Now, it’s common for all of us not to be prepared, particularly as I mentioned, individuals with a disability because it’s a scary thing. It seems like a great, huge task that is insurmountable. Particularly, if we have individuals who have medical needs, who rely on personal assistant services, who have other devices that are dependent on electricity. To think about becoming prepared for 72 hours on your own is frightening. And that fear often stops us in our tracks. But if we take this strategy of each, individual person needs to be self prepared, if your personal assistant service provider is late, you take the initiative of finding out where they’re at. You reach out to your point of contact, you access your natural supports. You do the things on a daily basis to address a potential emergency. That’s the strategy that each individual with a disability needs to take in preparation for their own personal preparedness and resilience in a disaster.

Dawn Skaggs:
The role of the government, the service providers, the agencies, the NGOs, is to facilitate that. To find out what needs to be done and support individuals with a disability to become personally prepared because the winter storm is the perfect example of how critical that is. When there are no first responders, there is you, your resources, your natural network of supports, and your ingenuity. Not to say that it’s all on the person, but it’s on all of us to ensure that we develop that strategy, integrate it into what we do on a daily basis, so that an emergency may not become a full fledged disaster. And when the disaster is large and beyond your control, you have some redundancy, you have some resilience, and you have the ability to maintain while we engage with the agencies who are actually never the first responders. We and our natural supports are always the first responders.

Dawn Skaggs:
So the takeaway from the Texas storm really was that we need to be strategic and we need to be intentional in building our own resilience and building our natural resilience within pockets of communities. If the first responder is not able to get there because the roads are closed and there’s no gas, then it’s up to the neighborhoods to really be the first responders. Those people who you can trust to know what the needs are and exchange and support each other. Not instead of, but in addition to the obligations and roles and responsibilities of the government agencies.

Nicholas Love:
So Dawn, this once in a 100 year storm, what did we learn from that? Has there been changes or improvement in the disability inclusive preparedness as a result of the storm?

Dawn Skaggs:
As in most cases in a disaster, the lessons we learned don’t have an immediate and observational impact. Three months later, there is nothing in the community that we can point to and say, “This has changed.” We should have learned the lesson of survival and creating those natural supports and the critical preparedness component for the entire community. What I do see that we can learn and should be learning is building on these lessons that we experience every disaster. And step by step, piece by piece, building a relationship, tying, planning for people with disabilities into the plans that are done by agencies, the plans that are done by jurisdictions, the plans that are done on state and national levels. Making sure that our thought process is fully inclusive. Looking at the things that happened during that storm where individuals were stranded, where people’s lives were in danger, simply due to the temperature. And identifying, what can we take away from that besides the gaps? How do we fill that gap? And how do we develop those collaborations so that, that gap doesn’t happen next time?

Dawn Skaggs:
Or, we can identify the gap at the beginning of the disaster to access all of the capacity and resources within the community. Beyond just relying on government solutions. When the disaster like the Texas winter storm happens, as I started to say at the beginning, it impacts everyone and it’s not enough to say there was a gap. It needs to be the beginning of a conversation, which I think those conversations are beginning where we start to identify the roles and responsibilities, beyond the roles and responsibilities, identifying how we empower people to take on those roles and responsibilities. How we educate our agencies to, what are the needs in the community? What are the needs of the disability community? And just as importantly, where is the capacity? And where are the assets in the disability community?

Dawn Skaggs:
By looking at the assets post-disaster and saying, how did people manage? Where are the success stories? Where is the story of the woman who lives alone, who has multiple disabilities? But who prior to the disaster, built relationships with her neighbors, built a relationship with the people in her building so that they had a strategy to identify who was safe and who wasn’t and who needed assistance. One example of that would be a building of seniors in a relatively closed community where they had strategized in advance of the disaster, a method to hang a little note on their door. They door hangers similar to what you might see in a hotel and they were color coded so that with a brief look out of their door, they knew which of their neighbors were doing well, which of their neighbors needed some support, which of their neighbors were struggling.

Dawn Skaggs:
And creating those resilience tools are things that happen in every disaster and we need to be looking for those and sharing those beyond the borders of the disaster so that as a country, we can start to integrate best practices and promising practices that grow inherently and organically within the community to build that sense of whole community inclusive culture. Where, you don’t know where the promising practice is going to come from, because most often, it comes from the most surprising places and a lot of times, it’s interesting as you look back over disasters, a lot of the things that we do now as promising practices, were lessons learned from experiences and expertise within the disability community. There is a rich plethora of expertise and problem solving and innovation within the disability community and the lesson that we need to learn from the winter storm as well as all the other disasters that are still to come, both human caused and natural disasters, what are the things that we’re doing that are meeting daily needs that are innovative? That are working?

Dawn Skaggs:
And look into the disability community as a source for an immense capacity, rather than allowing government agencies to continue to look at the disability community as recipients of resources and recipients of care. We need to be turning that around 180 degrees and looking at the disability community, the experiences of individuals with a disability in disasters and finding out, what were the things that worked. How do we generalize that, so that they can be used on a regional and national level? So that we come to educate the government and power the government and help them do that facilitating role that they really should be doing to address the needs of real people, real needs in real disasters.

Nicholas Love:
Thank you, Dawn. People with disabilities are so resilient. We have the ability to overcome quite a bit and we have so much that we can share and I love how you bring together simple suggestions and stories to show what a great impact we can do. Let’s talk about beyond our borders, right? Let’s talk about recent disasters in countries other than the US. And the impact of the culture and the preparedness of people with disabilities. What could the disability led organizations do to respond? And how could they have been more supportive?

Dawn Skaggs:
When I talk about building the capacity and accessing the capacity within the disability community, that’s exactly what I’m referring to. What we see across the globe in every disaster is examples of disability led organizations or sometimes even individuals themselves who have a disability, coming to meet the need, to fill the gap that they can see because of their expertise. And we see that in every disaster. We saw that in the Saint Vincent’s Volcano, where at the grassroots level, people who knew disabilities, people who knew disasters, people who knew the real need in the community, came in to the fill the gap. We see that on the micro level within each disaster and we see that at a macro level. In the Japan tsunami, we saw independent community residents and service providers traveling hundreds of miles to provide evacuation assistance because they knew the need was there. We need to be integrating those resources into our global planning. And doing it in a culturally competent manner.

Dawn Skaggs:
There are some fundamental priorities that we see around the world and that is the value of human life and the need to care for others that we care for. And we need to be able to identify, what are the core skillsets? What is the core priority? And how do we make that flexible enough that it can be applied within any culture? How do we demonstrate value of human life and resilience in the face of risk and apply that to the diverse cultures that we have around the globe? One of the things we can do is really to identify those, glorify those, magnify those, and share those around the world. When we see best practices, when we see people taking the initiative, when we see disability led organizations who identify a gap quickly because they’re familiar with it, and taking the initiative to stand in that gap. Even if the system is not meeting the needs, they meet the needs.

Dawn Skaggs:
We can support those people and those agencies around the world by creating a culture where that skillset is valued be integrating that intentionally and strategically into the emergency operations plans of their particular government and agencies. That’s going to look different in each place because it has to take on the cultural relevance to wherever that’s happening, but in essence, it begins with effective communication. It begins with making the government aware that those disability led organizations are filling the gap and reminding them that really, they need to be a part of that process. They need to be a part of the solution, beyond just identifying the gap and analyzing it. Really taking action. And when they cannot take action due to limited resources or limited knowledge or limited reach and scope, to strategically and intentionally integrate those disability led organizations into their process. That accomplishes a couple things, not the least of which is acknowledging and partnering with those disability led organizations, nor the least of them is, having them a part of the system so that is not a financial and capacity drain on those disability led organizations.

Dawn Skaggs:
What we see most of the time is that happening outside of the strategic system in various parts of the globe, but we need to integrate those into their government process so that they do get those reimbursements. They are part of the funding chain. They’re an intentional part of the supply chain, so that they are a natural piece, they’re an acknowledged partner, instead of being the people who fill the gap for free on the side. And we saw that in Puerto Rico, we saw that in The Virgin Islands, we saw that in Saint Vincent’s Volcano, we see it time and time again. Bringing that back again, Nicholas, to where we started, which is supporting those disability led organizations through finding an avenue for them to build a relationship with their government in a culturally competent manner so that they can come alongside and create and fill a mutually beneficial, common goal. Which is, the thriving of their community, both prior to, throughout, or the response to a disaster and just as importantly, but not nearly so glamorous, the recovery from a disaster.

Nicholas Love:
You talk about these disasters are happening, these storms, these volcanoes. There’s another disaster happening with COVID. The COVID-19 vaccinations are finally becoming more readily available globally, but across the globe, nearly three million people, most of whom who’ve had preexisting conditions, which means technically they have a disability, died after contracting the virus. In our last episode, we talked about building forward better and creating more equitable disaster planning response and recovery so that the needs of the people with disabilities in marginalized populations are addressed to prevent such deadly outcomes in the future. What inequities remain as a barrier to build forward towards more resilient disability communities?

Dawn Skaggs:
I’m glad you asked, Nicholas. There is inequities that remain. Those inequities really carry across all disasters, all emergencies, and unfortunately across a lot of daily experiences in communities. One of the primary roots to that is effective communication. If we want an equitable community, if we want a level playing field in the response to a disaster, be it a short term disaster or long term, like COVID-19, we need to learn how to diversify and pivot our communications. There is no one strategy to build forward towards a more resilient disability community. We have to be flexible, we have to be resilient, and we have to be able to adapt our communications so that the equity that we’re desiring comes because we have provided the opportunities for each and every person with a disability or organization representing people with disabilities. Or Nicholas, even more generally, some of those communities that are also disproportionately impacted who are not part of the conversation, who are not maybe willing to actively engage with their government agencies. If they’re not there at the table, they get left out.

Dawn Skaggs:
And when we have long-term disasters and pandemics such as COVID-19, they cannot survive, they cannot be resilient internally. And when we have closed communities that are not involved, we need to be reaching out. We need to be diversifying our communication, we need to be thinking about, how can we create the most redundant multi-motile communication strategies possible? Because if individuals do not receive the information, they cannot act on their own behalf. If we are not effectively sharing, what are the access methods to a vaccine? What are the methods to stay safe? What are the things that you need to be doing on a daily basis in this new frontier of post-COVID-19? We cannot be expecting or counting on communities such as the disability community to be resilient because they simply won’t have the information.

Dawn Skaggs:
So in order to break down some of those barriers, we need to start with our communication strategies and make sure that they are reaching all of the community groups, including the disability community and various other subgroups that we see in all of our geographic communities. We don’t want to be recovering back. We don’t want to be recovering at all. We want to be taking the opportunity that we have in each disaster, even the pandemics to identify, how can we build a stronger community in general? And again, how can we look at what’s happening on a daily basis to maximize on that? How can we use our communication strategies and our new technology and the diversification and the pivoting that is being done in the community to more effectively bring our communities together? To more effectively address the needs of the disability communities? And really looking at, what is it going to look like in the future? Not, how do we go back to the way things were, but how can we improve?

Dawn Skaggs:
And that essential assumption of an equitable respect of realizing that each and every individual, each and every community group, brings something to the table. And looking at the disability communities as leaders, as asset providers, as innovators, which they are.

Nicholas Love:
Yes, yes. Thank you Dawn. So much to think about. Thank you so much for joining us today, Dawn. And thank you all for tuning in to today’s episode of What’s Up WID. Transcripts and ASL translations for today’s episodes are available on our website at www.wid.org/what’s-up-wid. To paraphrase the words of one of our founders, Ed Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you. Have a good day.