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The PandA Pod continues with our three-part series called Disaster, Disability & Democracy! This series focuses on voting rights and census participation of people with disabilities, and how these areas of democracy relate to disasters and emergencies.
The PandA Pod content is all about P&As and provides useful and entertaining training and technical assistance to P&As and our allies in an all-new format. Keep coming back to the PandA Pod for a range of disability rights related topics from some of your favorite National Disability Rights Network (NDRN) staff and our special guests all year long.
This second episode, entitled “U.S. Disaster Funding & Assistance Counts on an Accurate Census,” NDRN chats with Denice Ross, a Fellow-in-Residence at the Georgetown Beeck Center, who explains how census data impacts emergency preparedness and disaster assistance along with why households need to respond to the 2020 Census.
Transcript
Justine ‘Justice’ Shorter:
Greetings everyone, and welcome back to the PandA Pod, NDRN’s podcast all about protecting the rights of people with disabilities. I am Justine “Justice” Shorter, Disaster Protection Advisor here at NDRN. That means that everything I do focuses on disasters, fires, humanitarian crises and other types of emergencies. And today I am joined here by the magical Michelle. Michelle, how are you doing?
Michelle Bishop:
I don’t know how to follow that. The magical Michelle. I like that, though.
Justine ‘Justice’ Shorter:
Come on, talk to me about that PAVA, PAVA java.
Michelle Bishop:
This is Michelle Bishop, Voting Rights Specialist here at NDRN. I work on elections. There’s nothing else. I don’t have to hype that up. It’s 2020. It speaks for itself.
Justine ‘Justice’ Shorter:
Ooh, okay. That sounds like a jab and I’m going to have to come back to you a little bit later with that, but yeah.
Michelle Bishop:
Let’s move it to Erika.
Erika Hudson:
Thank you, ladies. No worries. My name is Erika Hudson. I’m Public Policy Analyst here at NDRN focusing on census, which is the core of our podcast today.
Michelle Bishop:
And if you listened to our first episode, you know it’s now called the big C.
Justine ‘Justice’ Shorter:
Absolutely.
Erika Hudson:
Apparently, which-
Justine ‘Justice’ Shorter:
Coined by me. I take full credit.
Michelle Bishop:
No one else actually says that, fortunately.
Erika Hudson:
On today’s episode of Disability, Disaster and Democracy, we will be focusing on census data and how it impacts emergency preparedness and disaster preparedness. Ladies, you all know Census 2020 is coming.
Justine ‘Justice’ Shorter:
The census is coming.
Erika Hudson:
The census. May the odds be ever in our favor. Duh-duh-duh.
Michelle Bishop:
Mm. It was so many mixed metaphors.
Erika Hudson:
I know. There’s a lot going on in here.
Justine ‘Justice’ Shorter:
Yeah, it was like a movie trailer. There was some Hunger Games stuff in there, but that’s how we roll.
Michelle Bishop:
Game of Thrones, a little bit of Hunger Games. Honestly, it’s making census sound a little bit scary.
Erika Hudson:
But you know it does just make census to talk about a census, doesn’t it?
Michelle Bishop:
They don’t call Erika the queen of the pun for nothing.
Erika Hudson:
That’s what I’m saying.
Justine ‘Justice’ Shorter:
Yeah.
Erika Hudson:
Well, ladies, before we get started, I need to run by some census facts here. You all ready?
Michelle Bishop:
Probably not ready for the census, but-
Justine ‘Justice’ Shorter:
I am ready for you to stack those stats.
Erika Hudson:
Like pancakes up in here. Okay. Now I really want pancakes. But nonetheless-
Michelle Bishop:
Pancakes just sound really good.
Erika Hudson:
They do.
Michelle Bishop:
Okay, let’s talk about something else.
Erika Hudson:
Yeah. Well, census, on a serious note, it is mandated by the constitution. It’s in article one, section two, and it’s federally mandated that we count every single person in the United States every 10 years.
Michelle Bishop:
Whether or not they’re a citizen?
Erika Hudson:
That is correct. Every single person in the United States is counted through our decennial census that happens every 10 years.
Justine ‘Justice’ Shorter:
Good to know.
Erika Hudson:
Right?
Justine ‘Justice’ Shorter:
Right.
Erika Hudson:
A lot of folks are familiar with what census data does, which is helps with apportionment of the seats in the U.S. House of Representatives and helps figure out how many representatives each state gets. That’s why we see California have a lot more than perhaps-
Michelle Bishop:
Wyoming.
Erika Hudson:
Yes.
Justine ‘Justice’ Shorter:
Or Vermont.
Erika Hudson:
Vermont. All these different States we can think of. That’s why census data is so important, and it changes every 10 years after we get our data. Did you all know that?
Michelle Bishop:
Apologies to the state of Wyoming.
Justine ‘Justice’ Shorter:
Well, this is important because also populations change–guess when–when disasters strike.
Erika Hudson:
Oh, I see what you did there.
Michelle Bishop:
Brought it full circle.
Justine ‘Justice’ Shorter:
I do those things.
Erika Hudson:
I love it. But also something that we’ve talked about is that census data helps determine how billions of dollars in federal funding gets distributed to states every year, and that all comes through census data.
Michelle Bishop:
So if you’re under counted, you’re underfunded.
Erika Hudson:
Exactly. And that’s why it’s so important to say, “Count me in!” as we approach 2020 Census and also so important for the disability community to say, “We count, and that we have a voice in our democracy.”
Michelle Bishop:
And probably also why we don’t use “winter is coming” as a catch phrase for the census because we actually need people to do it and not be afraid of it.
Justine ‘Justice’ Shorter:
That’s another Game of Thrones reference that I don’t get and…
Erika Hudson:
Was that Game of Thrones, though?
Michelle Bishop:
That is a Game of Thrones reference.
Erika Hudson:
Oh.
Michelle Bishop:
Justice said the census is coming at the beginning of the episode.
Justine ‘Justice’ Shorter:
Yeah, I just that off a movie theater’s thing.
Michelle Bishop:
Nobody else watches Game of Thrones?
Justine ‘Justice’ Shorter:
No, not very.
Michelle Bishop:
I’ll just sit over here.
Erika Hudson:
We’ll just continue on.
Michelle Bishop:
Yeah, please.
Erika Hudson:
That is why it’s so important. And something that I didn’t know until recently is that census data produces timely local data that is crucial for emergency planning. I did not do that until Justice, our fearless disaster preparedness and emergency preparedness, all things preparedness, disaster, told me.
Justine ‘Justice’ Shorter:
Yeah. No, it’s [crosstalk 00:04:37].
Michelle Bishop:
I thought you almost called her our fearless disaster leader, which sounds like something else entirely.
Justine ‘Justice’ Shorter:
No, it definitely sounds more scary. And I’m not too inclined to be associated with scary things because disasters are scary enough in and of themselves. They are very unpredictable. Things can be very chaotic, and sometimes you can feel as if you have no control because, despite what many of us want or sometimes what some folks believe, we can’t control the weather necessarily, but we can do things around climate change. And it’s totally different episode. But it’s-
Erika Hudson:
I like how you tied it in, though.
Justine ‘Justice’ Shorter:
Yeah, but there’s just so many different things to think about when it comes to this. And I think that’s why the census is so important because we’re trying to make sure that people are counted. This is really important in particular for the disability community who has historically been invisibilized. And so the census is all about making sure that people are seen, that they’re heard, that they’re counted, that they’re included so that more equitable decisions can be made in terms of who represents them in Congress and who and who makes decisions on their behalf, which of course can be connected to really big issues like healthcare, like their overall rights to vote, like their rights to participate in just a number of different daily freedoms that we’ve all come to enjoy on a day-to-day basis. That’s really central.
Erika Hudson:
Well, it’s a beautiful thing. Everyone has opportunity to say I’m here. I want to be here. I’m counted. That’s rare, I think, in today’s world that everyone is in fact included in this process. And that’s what the census does, and that’s why it’s in our constitution. That’s why they say every single person will be counted every 10 years.
Justine ‘Justice’ Shorter:
Good to know.
Erika Hudson:
Right?
Justine ‘Justice’ Shorter:
Well, we have some good stuff coming up today.
Michelle Bishop:
Yes. Today we’re going to be joined by Denice Ross, who’s a Fellow-in-Residence at Georgetown University where she works on issues related to disaster, census, climate change and many more issues. But today we’re going to be learning from her about the census and how it relates to emergency and disaster preparedness. Denice, come on down.
Denice Ross:
Hi there. I’m Denice Ross, and I’m a Senior Fellow with the National Conference on Citizenship and also a fellow with the Beck Center for Social Impact and Innovation at Georgetown University.
Erika Hudson:
Excellent. And Denice, thank you for being on the PandA Pod today. I was really excited to have you join us as I heard you speak at a conference that we were both at, I think, back in December of 2019. And you discussed the-
Michelle Bishop:
A month ago.
Erika Hudson:
It was last year. It was. Well, at a census meeting. And you mentioned how census data played a role in the relief of Hurricane Katrina, and that was the first time I put the pieces together, why census data is so important, not only for federal funding of the programs that I think we think of every day, but for disaster relief and emergency preparedness. So I would love for you to chat about why census data is so important for all of that.
Denice Ross:
Yes, thank you. And this is one of my favorite topics. It was really an honor to be on the podcast. So for a little background, I was in New Orleans. I moved there after Census 2000 was released, and there was this great opportunity to democratize these federal datas so that rather than being used by decision-makers behind closed doors to make decisions about communities, there was this possibility that the data might be easier for folks to access so that communities could use the data to advocate on behalf of their own destinies. And so that’s what I was doing before Katrina happened. Katrina happened in 2005. When Katrina flooded 80% of the city after the federal infrastructure failed, the data that the census had collected about the city became instantly historical. And so we were really flying blind in the recovery. It made me realize how much I’d been taking census data for granted. And so ever since then, I vowed I would never take census data for granted again.
Denice Ross:
And, of course, with the 2020 Census coming up, which the census day is April 1st, 2020, it’s really front and center in any advocacy community right now, making sure that everybody is counted for disaster preparedness. Every time you see that there’s a fire or a hurricane or an earthquake, there’s usually an area that’s impacted and some severity associated with that impact. But the way that we make meaning out of that is knowing who are the people. How many people are affected, and what are their demographics, and what’s the intersection of the disaster and the population? And that’s the role that census data plays. If you could indulge me, I’d love to give a little bit of an overview of the census data products as they relate to disasters and disabilities.
Justine ‘Justice’ Shorter:
That’d be great.
Denice Ross:
Okay. The first is the decennial count. And that’s just a really basic questionnaire. I think there’s only nine or ten questions, and that just covers sex, age, number of people in household, race or Hispanic origin, owner or renter. And that data is available. It’s really good data because it’s a count of all the people, and it’s available at the block level. So you get great geographic granularity, which is important for disasters because think about how a tornado works. It just can cut a swath just a few blocks wide, and we need data about the people who are impacted by that disaster at the small geographic area.
Denice Ross:
And because the decennial census by definition is every 10 years, the Census Bureau fills the gaps with these annual population estimates. And there they basically take the base number from the decennial count, add births, subtract deaths and then account for net migration of people moving in or out of the geographic area. But the really interesting data that we use for disasters and emergency planning is from the American Community Survey, and that’s a sample. And it gives you great information on access to a vehicle, what languages are spoken in the home, whether people have health insurance. It has specific questions about disabilities, including vision and hearing impairments, mental health and cognitive disabilities, mobility challenges, whether people can perform activities of daily living, do they need assistance for running errands and do they have a service-connected disability as a veteran, that type of thing.
Denice Ross:
And then lastly, the Census Bureau collaborates with HUD, the Housing and Urban Development agency, to conduct the American Housing Survey, which has great data on accessibility of the home for people with disabilities. And why that’s relevant is because the cost to rehab a home that was made accessible before a disaster, the cost to rehab it is going to be higher. So those are the four main data sets that the Census Bureau produces that are really essential for planning for emergencies and disasters.
Justine ‘Justice’ Shorter:
And let me just also pivot back once more to ask about disaster housing. You mentioned that a few moments ago, and it is the issue that I constantly come into contact with from one disaster to another. It does not matter where it is around the country or in the territories, the disaster, I constantly come into contact with this issue: the shortage of affordable, accessible, available housing. Can you just elaborate a little bit more about kind of the American Community Survey, the information that it collects around housing? You’ve mentioned here around whether or not a home was accessible and what that looks like but then also kind of thinking about that after a disaster and how much it costs to rehab a home and make it accessible. We see in the field often that the goal is to get a home to be back to its pre-disaster standard.
Justine ‘Justice’ Shorter:
And so the question or the concern that many disaster survivors with disabilities have is, “If my wooden steps were washed out and I could barely use my wooden steps if I have a mobility disability, then can we make some arrangements here so that I could have a ramp in place as opposed to just building the steps back? Can I get a wooden ramp as opposed to these wooden steps because it makes no sense to build it back to that pre-disaster standard if it wasn’t accessible to begin with?” But we can keep in alignment with this whole idea of building back better in a way that’s more conducive to communities and to individuals, so I just wanted you to expand a bit on that concept.
Denice Ross:
Yeah, there is a great opportunity here for evidence-based advocacy to change the policies. And so I think there would be sort of two avenues that I’d pursue, and one is this allowing to build back better. If your needs weren’t being met in the home that you were in, can you build back so that the home is accessible after the disaster? The second thing is just making sure that the maximum limits for housing support after a disaster, that people with disabilities who require accessibility modifications to their home have a higher limit so that they can replace the ramp and replace all of the accessibility they might’ve had inside the home.
Erika Hudson:
Denice, that’s great. Thank you so much for tying that all together. That’s really helpful and a lot of information that I did not know, and I really like how you said “build better”. And that’s something we can take away after disaster strikes. And I want to tie something back into what you said earlier in the podcast. You mentioned Hurricane Katrina, and I think in today’s day and age we see that more and more with different disasters going on, whether that’s Hurricane Maria or the wildfires in California. So I’m curious, what does the Census Bureau do after disaster strikes? And you tied in kind of why the data is so important. But during that rebuilding phase, I think of California and how so many people had to move out of that area following the fires. And I imagine those numbers are going to be vastly different now in 2020 than they were during the decennial in 2010. So I wonder if that has any impact, and I’m curious to see if you have any thoughts on that.
Denice Ross:
Disasters definitely impact data collection, and it’s tricky because it’s really a chicken and egg thing because in order to be in place and back in your home after a disaster, you need certain services. You need a complete community around you, but that complete community won’t be established until there’s a demonstrated need for those services. So I remember after Katrina, the most common response to these types of conundrums was it’s a chicken and egg problem. I can explain that a little bit by just describing how the Census Bureau handles when they go in and when they go into a post disaster situation. So the Bureau’s committed to counting every person in the United States only once but in the right place. And the way they define the right place is by what they call your usual residence, and that’s where you live and sleep most of the time.
Denice Ross:
People who are displaced by a disaster don’t have a usual residence that’s where it used to be. And so that’s tricky. They get counted wherever they are staying, whether it’s a shelter with a family member, which may be outside of the area where they were living before the disaster. So after Katrina, I evacuated to Phoenix, and I was there for six months because we didn’t have power. And so if the census count had happened at that time, my usual residence would have been Phoenix, Arizona. Now with that said, the Bureau, what they do after a disaster if there’s a decennial count coming up is this time around (for example, for Puerto Rico and Paradise, California and Mexico Beach, Florida) they’re leaving forms door-to-door. They’re also using iPhones to update addresses so that they know which buildings are gone, where did new buildings go up just to make sure they have a really good address file, and most importantly they’re checking nearby shelters, temporary housing and trailer parks.
Denice Ross:
But the trick there, of course, is that if the census counts are used to determine what services need to be put into place in a particular area, how many dialysis clinics do you need, what type of special education services do you need in your schools. If people can’t move back because those services aren’t in place, then they aren’t counted when it comes time to determine the need for those services.
Erika Hudson:
Right.
Justine ‘Justice’ Shorter:
Denice, I want to pick up on something that you said there. You mentioned power, and of course, our minds as individuals who work with people with disabilities go immediately to folks who are electricity dependent. Can you speak to us about another form of data collection around ensuring that individuals with disabilities have access to electricity? Can you talk to us about emPOWER and tell folks what that is?
Denice Ross:
Yes, absolutely. So when you’re talking about data and disasters and especially the intersection with disabilities, the data that’s provided by the census is population level data. So you can use that to figure out where should we send the evacuation buses and maybe how many wheelchair-accessible buses do we need, but you can’t use census data to knock on the door of somebody who needs help evacuating. It’s not individual level data. Now, what’s great about administrative data that the local or federal government might have or different nonprofit providers is that that has data about individuals and their needs.
Denice Ross:
And one really nice example of this is the emPOWER program out of the Department of Health and Human Services. It’s E-M power, emPOWER. And they have data from Medicare on people who are dependent on durable medical devices, so ventilators for example. And they had this fantastic map where you can look down to the zip code level at the counts of people who are dependent on durable medical equipment and would need assistance if there was a power outage. Now that’s not enough to rescue the individual. It’s enough to put in place resources to help that population. Where the really powerful connection comes in is that when a disaster is declared, HHS can share the individual level data with the local health department. And then the local health department can reach out to those people who need help when the power goes out.
Justine ‘Justice’ Shorter:
Yeah, it’s such a vital resource. I have been deployed to disasters where folks have used that data from emPOWER versus information that has come from other data collection sources, primarily because, as I asked in the beginning, kind of the rate of response amongst individuals with disabilities, perhaps those numbers were significantly lower or out of date and were not necessarily applicable to the situation at hand. And to your point, when one is trying to provide evidence-based advocacy, it’s difficult to do that when you are interacting with folks and you can clearly make the connection that there are people with disabilities here but the numbers don’t bear that out. And when you are in rooms trying to advocate for additional resource allocation and service delivery, it really does help to have a multitude of tools to have at your disposal to say people with disabilities are here and there are clear defined needs here.
Justine ‘Justice’ Shorter:
But then also bear in mind that people with disabilities, just as the general population does as well, move. They move around either because they’re displaced by a disaster or because it is their own desire just to move to a different neighborhood. So we have to just be aware that if you’re going to have a hundred or several hundred, several thousand folks in a particular area, you can bet that probably about 25% or so of those on average perhaps could have a disability or an access and functional need. So we have to be mindful of that when advocating to disaster leaders.
Denice Ross:
Absolutely. From my perspective, everybody working in emergency management should be a disability advocate, and every disability advocate should also be somewhat data savvy so that they can tell more effective stories and make the case. And knowing what data are available, both from the official statistical agencies like the Census Bureau and also administrative data sets that you or your local government might have access to.
Michelle Bishop:
I’m sorry, disaster professional should be disability advocates. That was just one more time for the cheap seats in the back.
Erika Hudson:
Yes.
Justine ‘Justice’ Shorter:
Also wanted to ask you another question here, Denice. Can you talk about the distinction between registries and the census and the American Community Survey? And I ask this because sometimes registries have been seen to be somewhat of a controversial issue to varying degrees depending on who you ask and kind of where in the country or in the territories you’re asking that question. But I want to bring this up specifically as it relates to linkages to certain marginalized populations that intersect with disability. For example, individuals who may be of immigrant status or perhaps do not have legal status here in the country but who also have critical needs and need specific assistance or perhaps services that are available to the public but are not making themselves known because they don’t to be on any particular list or they don’t want to have their names or information associated with any particular registry of some sort but then also individuals who have not had the best relationship or history with law enforcement.
Justine ‘Justice’ Shorter:
And I only bring up law enforcement because in some counties, especially small rural areas… And I’ve traveled all across the country and I’ve met with first responders who are fire and EMS folks but who also share their data and their information with law enforcement. And so that can sometimes serve as a deterrent for some communities who have not had the experience (I’m thinking black and brown communities in particular) with law enforcement and just don’t want their names on the list if they have a mental health consideration or additional concerns that they just don’t want people to know ahead of time. But could you just give us a bit more information on your thoughts as it relates to registries as well as the American Community Survey and the census when we talk about data and the assistance available to certain marginalized communities in particular?
Denice Ross:
I’m so glad you asked that because that’s really the frontier for the conversations that need to be happening. And first, just to be super explicit, the census is not a registry. So they collect individual data, but they only publish summaries of that data. So you cannot be individually identified. And the Census Bureau is prohibited by law from sharing any individual-level data with law enforcement or anyone else. Now that’s good. So they will not share it with the police department. They also will not share it with the fire department who might be coming to help you if the power goes out. That’s why it takes a full complement of data to really provide the type of supports that communities need when a disaster happens. So the census data, the population level data, can be really useful for general planning, but it will not help individuals.
Denice Ross:
Some cities do have something they call a special needs registry, where if you need additional assistance during emergencies, you can sign up for help. It’s really, really hard to make those complete or accurate because people move around. And I think there’s a good reason for concern about how alternative data might be used to help people with disabilities in emergency situations. So for example, your healthcare provider has information about you, nonprofits who are helping support with activities of daily living have information about you. How would you want that data used? And so there’s an important role right now for the disability community in terms of setting up governance in advance of disasters of how personal information that’s collected by state and local government or nonprofits might be used to help you and your community or how you don’t want it to be used.
Justine ‘Justice’ Shorter:
Mm-hmm. No, I think that’s a really great point. And often, again, special needs registries, it can be a controversial issue. There are some circumstances and folks that I’ve spoken to who swear by it and think that it’s wonderful, and others have seen it being used in practice directly after a disaster where hundreds, if not thousands, of people are on a registry and only about a dozen actually were assisted to evacuate afterwards, so kind of that false sense of reliance that because my name is on it I’ll definitely get help.
Justine ‘Justice’ Shorter:
But then also taking into account that people with disabilities live full, well-rounded lives for the most part. And so not everyone is always going to be at home. I think we kind of move away from this thought that people with disabilities are sequestered away in their homes and are not able to enjoy the community. We think about this in relation to community integration. So that means you could be at a mall, you could be at a concert, at the club, whatever the case might be, but you could be out enjoying life. And a disaster can happen at anytime. Now, we’re hoping you’re not partying in the middle of a hurricane, but-
Erika Hudson:
You know. But…
Justine ‘Justice’ Shorter:
But if there is some sort of situation where there is very little to no warning such as an earthquake or even a tornado that has very, very little warning and you kind of have to just a shelter in place wherever you are. That could be anywhere within your community. And so just knowing that whatever is put in place has to be flexible and fluid enough to fully comprehend and plan for all of those different variations.
Denice Ross:
Yes. And the time to do that planning is before the disaster [crosstalk 00:29:01] happens. That’s how you maintain your autonomy over your own data is by helping set up the governance in advance.
Erika Hudson:
Excellent. I have one more question that I would really like to talk about real quick as we’ve talked a lot about the use of census data and why it’s so important. But in the context of the 2020 Census, I think a lot of us hear about the federal funding that relies on accurate census data and why it’s so important for a fair and accurate count and then on top of that how it helps communities build. So in terms of disaster planning and disaster relief, could you tie all that in together for us in why participating in the 2020 Census is so important in this context both far disasters and just for our everyday life?
Denice Ross:
Yeah, and this comes down to the core purposes/roles that census data play in our democracy. The most important one is congressional apportionment and determining how many votes your state gets in the Electoral College. So just in order for your state to be represented at the national level, everybody needs to be counted. That’s absolutely essential. The second one is that voting districts, of course, are drawn based on census data. And so if populations are not counted in the decennial count, then their voting power will be diluted, so they won’t have the representation that they need. And then lastly is the distribution of federal funding. Many federal programs have their funding formulas based on census data. And so communities that are under counted are likely to receive fewer services, and that has a downward spiral in terms of quality of life and I’m tackling some of the intersectional challenges of poverty and disability and race and whatnot.
Erika Hudson:
Excellent. Thank you. And I saw a few days ago when I was doing some additional research how, and correct me if I’m wrong with this, they use census data to determine how many fire stations a town might need based on the population, whether they need more. Is that what your understanding is too of how potentially a community can see the direct impacts of census data?
Denice Ross:
Local governments use the small area census data all the time for that type of planning. So they use it for determining where fire stations are, police stations, hospitals, Starbucks, [crosstalk 00:31:55] childcare centers. And that was what was so tough after Katrina is we had no idea who was back, what they needed and what services we should put into place. How do we prioritize it? We were really flying blind after the storm.
Justine ‘Justice’ Shorter:
Yeah. I think it’s really important to emphasize that piece there where we’re talking about the money being associated with this because we can plan as much as we can, but if there are not financial resources associated with those plans, then they are just merely ideals and they’re aspirations. It’s purely aspirational, but it won’t be practical when something actually happens if we don’t have the resources in terms of personnel but also in terms of funding, the services, different collaborations in terms of partnerships with the community, so on and so forth. If we are not working to make all of those pieces come together, then the plans do not yield the same purpose that they ultimately had in the very beginning that we started out with initially. So it’s very important to make sure that those two things are connected and streamlined throughout the entire disaster cycle.
Justine ‘Justice’ Shorter:
And Denice, with that, I do also want to ask do you have any additional statements, anything that we have not gotten to thus far? I think Erika and I’ve gone through a ton of questions. with you. Is there anything else that you would like to say that we didn’t get to?
Denice Ross:
I think we covered everything. For me, the two things that I think are potentially most important is that people with disabilities are currently not well represented in the field of emergency management and that they need to be at the table before, during and after events to chart an equitable response and recovery. And an equitable recovery is better for everyone. Disaster recovery isn’t just one person at a time. It’s entire family units and communities that are part of the recovery. And if we don’t include everyone, then the recovery is going to be incomplete. And the second point is that the data landscape is changing rapidly with social media and just so many different administrative datasets that we are all in, all these databases. And now is a perfect time for the disability community to help start providing governance on how those data can and should be used to save lives and protect privacy.
Justine ‘Justice’ Shorter:
I love that. We talk about citizen participation all the time, and so I love that central focus on governance, that we need to have more individuals with disabilities governing the process, not just casually consulted here and there, but truly involved with the governing the process throughout. I love it, and I want to make sure that I keep that mentality with me as I continue on with the work that we’re doing here at the National Disability Rights Network. Ladies, do you have any final questions for Denice or comments?
Michelle Bishop:
Denice, I just wanted to say thank you. The census has always been really important to me because, as you mentioned, it is how we draw our voting districts, and elections are my jam. But I still think that prior to today I probably also was taking how important the census is for granted. You mentioned earlier if you’re not counted in the census, you’re invisible and being invisible is deadly, and I will never forget that. And I think this conversation proves in how many ways that is so true, so thank you.
Justine ‘Justice’ Shorter:
Absolutely. Often people with disabilities are invisibilized or erased from the conversation, and I think we actively tried to combat that in our work on a daily basis. So this conversation just emphasizes that even more.
Erika Hudson:
Yeah. And the fact that you said include everyone hits home to me as I think NDRN’s main effort in the census has been to count everyone but also include everyone as well as this is a collaborative effort to make sure that no one is invisible and that we all have an equal voice here.
Denice Ross:
Yes, absolutely. Yeah. And anything I can do to collaborate moving forward. This is super important work. And I’m so glad that you asked me to be on this podcast.
Erika Hudson:
Denice, Thank you so much. This was absolutely incredible and I-
Justine ‘Justice’ Shorter:
You’re wonderful.
Erika Hudson:
Yeah. As much as I’m focused on census, I had no idea about a lot of stuff that we just talked about, so thank you very much.
Justine ‘Justice’ Shorter:
Another huge highlight that you wanted us to point out is that registries are not the same as the census, people. Let’s be clear on that.
Erika Hudson:
Yes. Yep. Excellent. Well, thank you all for joining us on the PandA Pod today on our series.
Michelle Bishop:
I have terrible news.
Erika Hudson:
Oh, yes.
Michelle Bishop:
Next week is our last episode.
Justine ‘Justice’ Shorter:
Why would you end on such a Debbie downer note?
Michelle Bishop:
I know, sorry.
Justine ‘Justice’ Shorter:
Okay. Well, here’s the good news, though. The good news is that although next week will be the last episode of this series on Disability, Disaster and Democracy, it will only be the continuation, though, of the PandA Pod more widely because NDRN staff will continue to serve up phenomenal episodes and information and content about all things related to protecting the rights, the lives, the dignity of individuals with disabilities, and we’re super excited about that.
Erika Hudson:
All right. I feel better. Thank you, Justice.
Justine ‘Justice’ Shorter:
I’m here for you, girl.
Erika Hudson:
Thank you.
Michelle Bishop:
Tune in next week.
Justine ‘Justice’ Shorter:
All right. Have a good one.
Michelle Bishop:
Bye.
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