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What’s Up WID: Demystifying Disability Transcripts

Ashley Inkumsah:
Hello, everyone. And welcome, or welcome back to What’s Up WID the World Institute on Disability podcast, where we discuss what’s up in the disability community across the globe. If you’re new here, my name is Ashley Inkumsah and I am your host. Now on today’s episode, it is my pleasure to share with you a thought provoking conversation that I had with the one and only Emily Ladau. If you’re not familiar with Emily, she is a disability rights activist. She’s an author and a digital communications consultant, and she has a brand new book entitled Demystifying Disability: what to know what to say and how to be an ally. And we chatted a little bit about what it means to demystify disability and what the role of allies is within disability activism. It was an absolutely incredible, incredible conversation, and I hope that you enjoy it.

Ashley Inkumsah:
Thank you so much for joining me today, Emily, to have this conversation about how to be an ally to the disability community and your new book, Demystifying Disability. My first question for all of our guests is always, how are you doing today?

Emily Ladau:
That is a fun question to start out with. I feel like we always jump right into the conversation and we don’t get a minute to take a deep breath and check in. But yeah, I’m good today. It’s a Monday when we’re recording this, but I’m feeling pretty energized.

Ashley Inkumsah:
Same here. I think there’s something in the air. I don’t know. I just feel energized despite the fact that it’s a Monday. I normally don’t feel this way, but yeah, I think I’m just excited to talk to you really.

Emily Ladau:
Oh, I can’t wait for this conversation. I think it’s going to be great.

Ashley Inkumsah:
Yeah. It’s an important one to have for sure. So our audience can get to know you a little bit better. Can you please share a little bit about your background and how you got involved in the disability inclusion space?

Emily Ladau:
Sure. Thing. So I was born with a physical disability called Larson Syndrome. So it’s a genetic joint and muscle disorder and I’m a wheelchair user. My mom has the same disability that I do and my uncle, her younger brother has it as well. And so disability has always been a part of my life. But when I was 10 years old, I had the opportunity to actually appear on multiple episodes of Sesame Street to talk about my experiences as a kid with a physical disability. And that, in hindsight, really was what sparked for me this passion to educate others about disability. And so, since that time in my life at age 10, I’ve been gradually developing and refining my voice for advocacy and doing so while also continuing to learn from and connect with so many incredible people within the disability communities. So it’s been a journey to get to where I am today and I’m still constantly learning.

Ashley Inkumsah:
Yeah, Sesame Street. That’s an amazing start. I remember as a kid, my mom had to pry me out of the house. I was obsessed with that show, oh my God, Elmo was… I had a doll of him and everything. Really a cultural, beyond everything, a cultural phenomenon and really educational in the way that they tackle issues in such a way to teach children, because that’s when we need to start learning about these things. So really amazing that that’s where you got to get your start.

Emily Ladau:
Yeah. And I think there’s room for improvement in all areas of representation. And there’s certainly communities that could be better represented on Sesame Street. But at the time I think that what they were doing was pretty powerful because they gave me the opportunity to help shape the story around what I wanted people to know about disability, even at age 10. And so while there’s always gaps in representation, I’m also a big believer that every little bit of progress is incredibly important. And so to have had even the tiniest role in that progress is something that I don’t take for granted.

Ashley Inkumsah:
Absolutely. Yeah. You shouldn’t. Yeah, for sure. So your new book, Demystifying Disability lays out what to know what to say and how to be an ally. Can you tell us, what does the phrase demystifying disability mean to you?

Emily Ladau:
That’s such a great question because I want to be very clear that I do not mean demystifying every single disability, every single part of the disability experience. I mean, demystifying some parts of what it means to be disabled. And obviously a catchy book title would not be “demystifying some disabilities, but not all disabilities.” So we went with Demystifying Disability because it’s a catchy title. But in reality, what it means to me is that I’m offering people a starting point. This is not the definitive guide on disability. This is not the encyclopedia of disabilities. It is not the Bible of disabilities. I am not in any way, shape, or form saying that I am the expert on all disabilities. What I’m saying is that I want to start a conversation. And I think so often people really are mystified by disability. They’re confused about how to talk about it.

Emily Ladau:
They’re afraid of it because they don’t understand it. They’re not really sure how to engage in basic conversation around disability or with disabled people. And so if I can offer an entry point into the conversation around disability then to that’s what demystifying looks like. I’m one person, it’s one book. I would never claim to speak for everyone. And I would never claim to be an expert on any experiences other than my own. But if I can give one person the tools that they need to begin the conversation and feel a little less alienated or confused by disability, then I feel like that’s what demystifying disability really means to me.

Ashley Inkumsah:
I’m curious. Why do you think that disability gets mystified in the first place? What do you think is the root cause of that mystification of disability?

Emily Ladau:
We live in a world where we’re socialized to be ableists and we’re socialized to look at disability as shameful and as negative. And so my goal has always been to flip that script and to say, disability is not shameful. Disability is just part of being a person. It’s a very natural human experience. And when we look at it in this stigmatizing, shameful way, we’re automatically rejecting 1.3 billion people out of hand, simply because we’ve decided that being disabled is a bad thing. And so if we can really get to the root of some of those taboos, if we can understand where they come from, that the media perpetuates them, that they’re built into systems, that they’re integrated into our language and how we think suddenly we begin to realize, of course, disability is still taboo, because we’re not really meaningfully, including disabled people. We haven’t even reached the point of inclusion, let alone celebration, let alone embracing and acceptance. Right? So there’s many steps to take in this process, but I actually feel like little by little one mind at a time we’re getting there.

Ashley Inkumsah:
Yeah. And I think a lot of the ableism is actually even, I like to give grace to people because it’s born, as you said, we’re socialized to be ableist in our society. And a lot of people don’t even know that they’re exhibiting ableist behavior. I mean, even sometimes when I’m typing out the word ableist or ableism, it’ll underline. So not even the dictionary, even recognizing that it’s even a thing. Right? So how do we even start to dismantle it when we’re not even having those conversations? So how do you think that people can begin to unlearn the ableism that is so pervasive in society?

Emily Ladau:
I really appreciate talking about this because you’re absolutely right. We are asking, as disabled people, for ableism to be dismantled, but how can we ask for something to change when there’s not yet an understanding of what it even means? We hear so often these conversations about types of discrimination and ableism is often left off the list, despite the fact that ableism is so deeply intertwined with other forms of discrimination and often has a significantly bigger impact on already marginalized communities. And so I think in order to unlearn ableism, we have to first understand that in many respects, it’s not really our fault that we are ableist. You have to take responsibility for your ableism. Absolutely. But what you said about giving grace is so true because a lot of people just are not aware of the ableist attitudes that surround us and that are so integrated into everything that we do.

Emily Ladau:
So I’m calling on people to first start to understand what ableism even is, how does it show up in language? How does it show up in media? How does it show up in how we interact with other disabled people? And also if you make a mistake, if you mess up, if you do something ableist, I believe you can come back from that. It’s not like suddenly you are forbidden from ever interacting with another disabled person. Right? I mean, that’s not to say that we don’t need to own our mistakes, but it is to say that if we don’t give people the space to learn from their mistakes and to learn from what ableism looks like, then how are we ever going to move past ableism? So I think it’s really a matter of first digging deep into an understanding of what ableism looks like, how it shows up, how we perpetuate it and then unlearning it a little bit every day from there. Not to mention, I’m disabled and I can be ableist too.

Ashley Inkumsah:
Absolutely.

Emily Ladau:
I mean, just because you’re disabled doesn’t mean that you’re not ableist. I think we also need to acknowledge that. So there’s many layers to the conversation about ableism.

Ashley Inkumsah:
Yeah. Yeah. And you mentioned that interconnectedness, so many of us within the social justice space are fighting for, seemingly on the surface, different and issues, race issues, women’s rights, LGBTQ rights. But it’s really interesting to find that most of these issues were born out of the same kind of root cause. And when you start to dismantle one, you’ll find that you’re dismantling the other as well. So I think that we need to work together within the social justice movement to be inclusive of all of the intersectional identities, because yeah. One system, it all empowers each other. So I think that’s yeah…

Emily Ladau:
A hundred percent. I find it so frustrating sometimes when people say that they advocate for one cause, but not for another, because we are all, and I don’t mean this in like a let’s hold hands kind of way, I literally mean we are all interconnected and if you’re fighting against ableism and you’re not also acknowledging the ways in which racism or transphobia or xenophobia for just some examples are so deeply intertwined with ableism, you’re not really fighting ableism. You’re fighting part of the problem. You’re not going to get to the solution if you’re not looking at the whole picture.

Ashley Inkumsah:
Absolutely. And why do you think that allyship is so important for people with disabilities to be able to achieve liberation? Why is allyship a key part of that?

Emily Ladau:
Allyship is such a complex topic. And I, despite the fact that it’s literally in the title of my book, struggle with that word, and I know that many other people do as well. And I know that often people try to use the term accomplice or co-conspirator instead, but really the problem with allyship is that we tend to call ourselves good allies. We tend to say, “Oh, I was a good ally today,” but it’s really not about that. It’s not about giving yourself that name. It’s about taking action and recognizing that allyship is very much a verb. And so allyship is a practice, and for disabled people, I think there’s so often this misunderstanding about allyship that we don’t need to be good allies because we are marginalized, right? But that’s not true. And from within the community, we need to be looking at how we can be allies to other people in the community who experiences are different than our own.

Emily Ladau:
And so for me, as a white physically disabled woman, my job is not to be the sole authority on disability because I absolutely cannot speak to what it is like for someone who, for example, is black and cognitively disabled, who is Asian-American and transgender and has a chronic illness, right? I’m just, I’m coming up with examples because disability cuts across any and all other identities. And we can’t forget that. And so I come to this conversation recognizing that I’m both marginalized and privileged.

Ashley Inkumsah:
Yeah.

Emily Ladau:
And I can do my job to be an ally, to other people within my own community, just because I’m disabled, doesn’t mean that I’m not also responsible for being the best ally that I can be to other people who are part of my community.

Ashley Inkumsah:
Yeah. I love what you said. I being able to identify that you can be marginalized and privileged. And I think the word privilege, it’s a really reactionary word. A lot of people, I think resist be being an ally because they don’t want to recognize the privilege within themselves, but not realizing that privilege is not something that you can control. You can’t control who you are and what you’re born into. But yeah, definitely. I think allyship starts at being introspective and recognizing, okay, that you do have some degree of privilege and how are you going to leverage that and use that for good. I think that’s where it starts for sure.

Emily Ladau:
Yeah. I’m really glad that you pointed out that you can’t control privilege because I think that sometimes there’s this misunderstanding that we can just sort of shake off privilege and only focus on the ways in which we’re marginalized or those experiences that we have. But I know that I can’t change my privilege. I do know that I can use my privilege effectively to be a better ally. And so there’s a lot of layers to this conversation, but it’s really important to me to be actively thinking about how I can continue to improve my allyship. Even with this book coming out, there are ways that I can do better, and I never ever want to stop learning and doing better.

Ashley Inkumsah:
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Ashley Inkumsah:
How do you think that an ally can… Because sometimes allies take up too much space. When and how can they pass the microphone? When do they know that it’s the appropriate time to pass the microphone to someone with lived experiences? So how can an ally simultaneously advocate for people with disabilities, but also allow them to tell their own stories?

Emily Ladau:
I’m a big fan of passing the microphone and it’s a delicate balance because when you have a platform and you have an audience and you’re using it to educate, you can also use it to amplify. And I think that’s the part that a lot of people forget, is that education is one thing, but bringing other people into the conversation and asking yourself where there are gaps is key. And I know that there’s still more work that I need to do, to ask myself, where are the gaps in what I’m sharing? Where are the gaps in what I’m amplifying? How can I continue to fill those gaps in my work as I move forward?

Emily Ladau:
And so passing the mic to me looks like being introspective and saying, “Hey, maybe I’m missing something here because this is not my lived experience. So it’s not coming to mind. Rather than speaking on what, I don’t know, let me hand that mic to somebody else.” And not only do you hand the mic to the person, but maybe you help that person hold the mic, whether literally or figuratively, maybe you help that person hold the microphone. So that can say what they need to say and people will listen. And it’s hard sometimes to know when to take that step back and decenter yourself. And I acknowledge that because I’ve been there too. But I also think the best thing you can do is your platform to continue to amplify. Amplify, amplify, amplify.

Ashley Inkumsah:
And shifting back to your book, I’m curious to know what inspired you to write this book?

Emily Ladau:
To be quite honest, this was not the book that I originally intended to write. I was very luck to be working with an agent and I thought I would write a book relaying my experiences being the disabled daughter of a disabled mother. And then my agent came back to me and said, “Hey, what about a book that starts conversations about disability?” And I felt like, why not take on that challenge? It’s a huge challenge. And it’s not one that I’ve taken on perfectly. I’m not going to get everything right, because again, I’m one person and it’s one book. But I think that if I can spark conversation through this book, that is my end goal. And that was really what inspired me the whole way through, is thinking about how people were going to have conversations and hopefully want to dive in and learn more about disability after reading this one book.

Ashley Inkumsah:
And what kinds of conversations do you want people to be having? And what’s the key takeaways that you want people to have once they’ve read your book?

Emily Ladau:
First and foremost, I want people to have conversations with themselves. I want people to really ask themselves how they feel about disability, how they think about disability, how they understand disability. And this goes for whether or not you identify as disabled. I want people to take some time to think through what disability means to them. And then I want people to take some time to think through how they engage when it comes to disability. What language are you using? What words should be eliminated from your vocabulary? How are you interacting with other disabled people? That doesn’t mean that you need to overthink that, that’s not what I’m looking for, but are you interacting with people mindfully? Are you recognizing the humanity of disability? Are you watching media that uplifts disability, or are you sharing that inspiring article that got you to break out the Kleenex? Right?

Emily Ladau:
So little things I’m asking people to be mindful of when it comes to disability. Have those conversations first with yourself and then start having them with other people. Did you hear someone say something ableist? Can you call it out? Do you feel comfortable? Did you notice that disabled people were not included in the planning of an event? How can you ensure disabled people are brought to the table so the event is made accessible? right? So it’s really a two part process of your own understanding and then applying that a real world situation.

Ashley Inkumsah:
Yeah. And I think of another barrier when it comes to allyship is I find that sometimes people have a hard time caring about causes that are not their own lived experiences. Right? For some people, even though disability intersects everyone’s life, honestly, for some people, I feel like there is a resistance to be an ally because they’re not having those same lived experiences. So do you have any advice for those people who might have those barriers of having trouble relating to what it really is to live with a disability? How can they get over that barrier within themselves? Because like you said, the first thing is to look within yourself and how could they get over that part of it?

Emily Ladau:
I think there’s a fear of the unknown. And for so many people, disability is unknown, despite how common it actually is. And statistically speaking, you or someone you know definitely is disabled, but because of that taboo surrounding it there’s a fear. And so we don’t want to think about what reality could look like if we were to become disabled tomorrow. But I like to remind people, as do many disability advocates, that the disability community is one that you could join at any time. And so that’s not meant to be threatening. It’s rather a call to action.

Emily Ladau:
If anybody can become part of this community, if your loved ones already are a part of this community, why would you not want to actively contribute to making the world a better, more accessible place so that you tomorrow, who may become disabled can benefit from that? If for purely selfish reasons, why do you not want to create a world that would work better for you? But more to the point, why would you not want to create a world that works better for everybody? Nothing about creating a more accessible inclusive world is going to make it worse. It’s only going to make it better for everybody. And so I ask people to look at it from that perspective. It’s not like you’re just making the world better for some people, if you start caring about disability, you’re literally going to improve things for everybody.

Ashley Inkumsah:
Yep. I think about curb cuts and how that helps people, delivery people using dollies and, and women with strollers and things like that, that close captioning, open captioning, how that benefits people, everyone around the world and not just even people with disabilities. So yeah, life gets better. I think of what we’re doing right now, having a online conference conversation, how that benefits people with disabilities as well. And if anything that we’ve taken away from the last, what has it been, 18 months of being in COVID is that, yeah. When you make things accessible, everyone wins.

Emily Ladau:
I love that you brought up curb cuts, and I think you were pointing to curb cut effect, which basically means that not everybody can get up a curb, but curb cuts will work for pretty much everybody. Right? Whether it’s someone pushing a stroller, somebody on roller skates, somebody wheeling luggage, whatever the case may be, pushing a laundry cart. Right? Let’s make more curb cuts. Let’s make virtual curb cuts. Let’s make real curb cuts. Let’s just create more curb cuts for people so that everybody can use them. It’s a benefit to everyone. Why wouldn’t we do it?

Ashley Inkumsah:
Exactly. Yeah. And what, what advice would you give to businesses and corporations? Because I think that’s where it starts, in terms of our infrastructure and all of that, what advice would you give to them? Why is disability inclusion so important? Why should that be a priority to businesses, do you think? And corporations and the government.

Emily Ladau:
On the one hand, I want to make the business case for it. Right? And I want to say quite obviously, disabled people make up such a huge part of the population, even though we’re a minority that it’s simply good business to be more inclusive and accessible. But I think beyond that, if we really focus on a culture shift, what we’re doing is improving our products, our services, our business practices, our end game for everybody.

Emily Ladau:
It’s kind of like what we were just talking about. If we are thinking about how we can make our business practices more accessible, if we are thinking how we can make things more usable. If we’re looking at a more inclusive culture, businesses are only going to benefit from that. The government is only going to benefit from that. Because you have an incredible diversity of views, of opinions, of experiences. You have people who are adaptable, unfortunately often because the world forces us to be adaptable, because it’s so inaccessible. But you have people who are creative, who are innovative, who come to the table with ideas and perspectives that someone who’s non-disabled wouldn’t have even thought of that can immediately make your product, your service, your practice, your policy, better for everyone.

Ashley Inkumsah:
Absolutely. Yep. Couldn’t have said it better myself. There is 1.3 billion people who are disabled globally. So that’s a huge market share. So where can people purchase your book?

Emily Ladau:
Great question. So Demystifying Disability is available pretty much wherever books are sold. I really encourage people to seek out a copy at their local bookshop if they can, because I want very much to support local businesses through the sale of the book. There’s also an audio book version available for people who are seeking to read it that way. And there’s an ebook for version available as well. And I’ve also just put on my website a plain language translation of the book to make it more accessible for people with a range of sensory and cognitive and processing disabilities.

Ashley Inkumsah:
That’s wonderful. Well, I can’t wait to read it. I’m definitely going to be purchasing my copy as soon as we’re done having this conversation and I’ve had so much fun, it’s been such a pleasure talking to you. It really has been great.

Emily Ladau:
Likewise, Ashley you’ve asked some of the most insightful questions and really pushed me to think more about even just the title and the frame of the book. So I’ve loved this conversation and I’m just really excited to see what other conversations it continues to spark. I genuinely think that you’ve covered everything. If there’s one thing that I could reiterate it’s that Demystifying Disability is again written through my own lens. And I very much acknowledge the privilege from which I come and the space that I occupy. And I hope that it will not at all be the only book that people read about disability. I hope that you’ll continue to seek out more resources that you’ll keep learning, keep going and remember that there are 1.3 billion at least disability experiences out there. So we’ve all got a lot of learning left to do.

Ashley Inkumsah:
Yep. I think, yeah, definitely reading your book is a first step, but obviously it’s not a linear path. It’s not just like, you’re going to read the book and that’s the panacea for all the ableism. No, I want everyone out there to purchase your book and then do actionable things within your community. That is espoused in the book. So I’m really excited to read it. So yeah, it’s been such a pleasure chatting with you.

Emily Ladau:
Thank you. You. Yes, it’s been so wonderful.

Ashley Inkumsah:
I want to thank Emily for having such an awesome conversation with me about allyship and the intersections of disability and how her book helps to provide actionable steps to help make the world a more accessible and inclusive place. I hope that you all are able to grab a copy of her book and I want to thank Emily again for that fantastic conversation. And I want to thank you at home for tuning into today’s episode, and you can find transcripts and American Sign Language interpretations as always for today’s episode and all of our past episodes on our website at http://www.wid.org/whats-up-WID. And if you enjoy today’s episode, be sure to share it with someone else that you think will enjoy it too. Now it’s about that time for our famous last words here on What’s Up WID, to paraphrase 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 so, so much once again, and I look forward to talking to you next time.

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Transcript for Deaf-Led Disaster Action Event

>>[VOICEOVER]: Deaf-Led Disaster Action: a virtual panel hosted by the Global Alliance for Disaster Resource Acceleration (GADRA) and Gallaudet University. Recorded September 24, 2021.

>> KOTA TAKAYAMA: Hello, and welcome. Hello again. My name is Dr. Kota Takayama. I’m a professor here at Gallaudet University. I’m joined by my two colleagues. To my left is Dr. Danielle Thompson, and to my right is Dr. Audrey Cooper. The three of us will be moderating today’s conversation. Thanks, Audrey and Danielle. So again a hearty hello and welcome to everyone joining us. We have over 400 people online. That’s amazing. We’ll have a series of presentations today focusing on Deaf-led disaster action. The Global Alliance for Disaster Resource Acceleration, otherwise referred to as GADRA, and Gallaudet University have partnered to make this event possible, to feature the work of organizations in Japan, Trinidad and Tobago, and Vietnam. As you can already see, we’re also using multiple sign languages in our program today, which demonstrates something critically important, which is that sign languages are not the same worldwide, and when disasters happen, we must understand and value each sign language community. We have a rich program planned today, and hope that you’ll enjoy learning from each of our presenters. If you take a look in the Zoom chat box, you’ll see that we have posted information about languages and the webinar agenda. Danielle?

>> DANIELLE THOMPSON: Hello. Today I’m going to talk a little bit the logistics for today’s webinar. As you see on the Zoom screen, we have a new experience for all of us. This is a new experience for us as well. So I’m going to share a few tips to make sure that this webinar is successful. We would recommend that you leave the Zoom in webinar mode, at gallery view, so that you can see each person’s screen. You’ll also notice that at the bottom of an individual screen, it will have the person’s name, followed by the language that they’re using, or vice versa. Throughout the presentation, you’ll notice there’s some pauses. Not to worry. We’re allowing some time for our interpreters to catch up. There are two options for the captions, which will be provided in English. You can either see it embedded into the Zoom. There’s also a link that we have included into the chat box for a StreamText link. That link will allow for people to see the captions on a separate screen. We do have English, Japanese, and Vietnam interpreters ready to answer any questions or comments in the chat. At the bottom of the screen, you’ll see the Q&A, which is where you will share your question or comment in the language of your preference, and we will attend to those when we are ready. I would now like to turn it over to Audrey.

>> AUDREY COOPER: Thank you, Danielle. All right. Now having discussed logistics, it is time to start the program. Today the three organizations, again from Japan, Trinidad and Tobago, and Vietnam, will describe their work in how they prepare for and respond to disasters. Many Deaf people and organizations are involved in disaster action all over the world. However, there’s very little information on their actions. We believe that two important reasons for this are that most governments often do not recognize the sign languages used in their countries, and secondly, governments often do not recognize Deaf people’s contributions to society, which means that these organizations lack equitable access to training and resource networks. This makes it all the more incredible that they do the work that they do without this support. As we celebrate International Week of the Deaf, and International Day of Sign Language yesterday, we hope that this event will bring more attention to these issues and to Deaf organizations who are working to save lives and to underscore the importance of their work, as they are truly out there every day saving lives. The presentations will begin shortly, but first we are honored to have some opening remarks by GADRA and Gallaudet University. From GADRA, we are joined by Marcie Roth, Germán Parodi, and Shaylin Sluzalis. Following the presentations from the GADRA representatives, we will have remarks from Dr. Gaurav Mathur, dean of the graduate school at Gallaudet University. I’ll now turn it over to Marcie Roth. Marcie is the Executive Director of the World Institute on Disability, and cofounder of GADRA.

>> MARCIE ROTH: Good morning. Thank you for joining the Global Alliance for Disaster Resource Acceleration today, for this important and unprecedented discussion, and a special thanks to our GADRA partners from Gallaudet University. GADRA was launched in July 2020 by three disability-led organizations: The World Institute on Disability, the Partnership for Inclusive Disaster Strategies, and ONG Inclusiva, as an unprecedented collaboration between disability-led organizations, foundations, and corporations to disrupt the failed charity approach to disaster relief. This long standing approach does not provide resources to local disability-led organizations who are most knowledgeable about how to support their community in a disaster. By bringing together local disability-led organizations, with the humanitarian resources from philanthropic donors, these vital community leaders are able to restore or continue their operations, serving their disaster impacted community when they are needed most. I’m excited to introduce our next speakers, our GADRA partners, Germán Parodi and Shaylin Sluzalis, co directors of the Partnership for Inclusive Disaster Strategies and emerging global disability and disaster leaders.

>> SHAYLIN SLUZALIS: Hello, everyone, and thank you for having us today. My name is Shaylin Sluzalis. >> GERMÁN PARODI: I’m Germán Parodi. >> SHAYLIN SLUZALIS: The Global Alliance for Disaster Resource Acceleration, GADRA, has connected with 1,540 disability leaders from 72 countries around the world, in its first year. In these spaces we raise awareness of the problem and provide solutions from disability-led organizations.

>> GERMÁN PARODI: GADRA has partnered with Gallaudet University to highlight the leadership role of the Deaf community in disasters around the world. Our goal is to share valuable information that help us all plan for and respond to disasters in an inclusive manner.

>> SHAYLIN SLUZALIS: We aim to create a global network of disability-led organizations involved in the matter of inclusive disaster risk reduction, and establish bridges to humanitarian relief resources, ensuring funding and support get to – right to disability-led organizations and the people they serve throughout disasters. Consider joining us at GADRA today.

>> GERMÁN PARODI: And it is our honor, without further ado to introduce Dr. Gaurav Mathur. Dr. Mathur is the Dean of the Gallaudet University’s graduate school. A linguistic by discipline, Dr. Mathur has conducted research on sign languages around the world, and is a strong advocate for Deaf people’s human rights to sign language. Dr. Mathur?

>> GAURAV MATHUR: Thank you so much, Germán and Shaylin. Disability inclusive disaster risk reduction is a growing field of practice. Yet Deaf people, including people who are DeafBlind, hard of hearing, or Deaf plus, are still marginalized from disaster communication in their countries. They are also marginalized from training and leadership roles in disaster management. There are two main reasons for this marginalization of Deaf people from disaster management: Stigma, generally referencing derogatory attitudes toward Deaf people, and language exclusion. I’ll talk a bit more about this. Most governments do not recognize the sign languages used within their borders. As such, their support for research on sign languages is little to nothing. Whereas there are thousands of languages in the world, only about 200 sign languages have been documented, and of these, only a few have been thoroughly analyzed. If governments do not recognize their Deaf community’s sign languages, they’re not likely to invest in policy, programmatic innovation, technology, or language translation services that Deaf communities use in order to contribute to disaster management and to their societies in general. Given this situation around the world, and the increasing frequency and severity of disaster events, Deaf organizations have begun developing their own approaches to preparing whole community responses to disaster emergency, disaster or emergency management. In light of that, I am pleased to announce that in order to support these efforts, Gallaudet University is excited to share that it is in the process of developing a graduate certificate program in global leadership and Deaf centered disability inclusive risk reduction and emergency planning. We anticipate this certificate program to launch in 2022. Gallaudet is honored to have the participation of the three presenters here today, and honored by their efforts to share with us all the significance of investing in Deaf people’s disaster preparedness and response efforts.

>> KOTA TAKAYAMA: Thank you so much, Dr. Mathur, for those remarks. We now will get underway with the presentations. I am honored to introduce you to our first presenter of the day, Mr. Naoki Kurano. Mr. Kurano works for the Japanese Federation of the Deaf. Thank you so much, Mr. Kurano, for being with us today.

>> NAOKI KURANO: Thank you for the introduction. I’m really happy to see all of you here. My name is Kurano, as just introduced. Kurano, that is my sign name. In 2011, Japan experienced a giant earthquake and tsunami, and in this disaster, 15,000 people lost their lives. The Japanese Federation of the Deaf conducted disaster relief support to Deaf people and sign language interpreters in the affected areas. And from this experience, we learned many very important lessons. That is what I wish to talk to you about today. There are three points that I would like to point out. The first is the importance of we, the Deaf ourselves taking part in disaster relief, and the second point is the hardships that – and problems that deaf people encounter in case of a disaster. And the third point is what governments can do to support Deaf people in disasters. Those three points I will talk about now. The first point, the importance of Deaf, we Deaf ourselves taking part in disaster relief activities. Deaf people, who are the people who know best what causes hardships for the Deaf? It’s the Deaf ourselves. So if disaster relief for the Deaf would be most effective if conducted in collaboration with the Deaf. To enable this, it is important for Deaf associations in the country to form a strong networking in normal times before a disaster. The Japanese Federation of the Deaf has member associations in all 47 prefectures of the country, and we have a strong network. We have all together about 17,000 members. We are a national organization of the Deaf. The Japanese Federation of the Deaf, when the giant earthquake and tsunami arose, in just four days after the disaster, we established a central headquarters for disaster relief for people affected by the tsunami and earthquake, and we supported the Deaf people and interpreters. We sent relief goods, supplies. We dispatched sign language interpreters, and we also sent social workers who can sign, Deaf social workers as well. And we called on friends throughout the country for a big fundraising campaign and collected a total of about 47 million Japanese yen, and this we sent to the Deaf people and interpreters in the affected areas for their restoration of their lives. The central headquarters for disaster relief, which was set up for the giant earthquake, has now changed its name slightly to disaster risk reduction, and in normal times it will train the Deaf communities about disaster preparedness, and also send petitions to the government, advocate with the government, for the needs of the Deaf in disasters. If a disaster should arise, the headquarters would quickly be called to action to support the Deaf. But what is important is the support, support to Deaf people in disasters should come from the Deaf themselves. We know best. And so the importance of having a strong national network is very important. The second point, problems that Deaf people confront in times of disaster. Information on the disaster and information on evacuation, if they don’t reach us, it means that many Deaf people will die. Also if we can’t communicate with the hearing people around us, even if those that manage to escape or evacuate, they will face many hardships before their lives are actually restored to normal. In the East Japan giant earthquake, the death rate of people with disabilities was double that of people without disabilities. And looking at the breakdown of different disabilities, there are five disability groups: Visual disabilities, hearing disabilities, physical disabilities, intellectual disabilities, and mental disabilities. Among these different categories of disabilities, the death rate was highest for which group do you think? It was highest for the deaf actually. The death rate was highest for the Deaf. This was a big shock for us, because we can’t hear, but we can move around. We can run. We can escape. So why was it that the death rate was the highest for D eaf people? That was because we couldn’t hear the warning sirens for the warning announcements. Television didn’t give us no sign language interpretation on television. We didn’t know, we couldn’t – Deaf people didn’t know that they had to evacuate, they had to escape. That’s why many people lost their lives. They couldn’t escape in time. And even those that managed to evacuate, escape, confronted many hardships. In the evacuation centers, they would give out food, distribute food or clothing, but all of the announcements would come in audio form, verbal form. And they wouldn’t reach us. And also support. Support for to restore our lives didn’t reach us in time. There were no sign language interpreters to help us. Sign language interpreters were also – suffered the earthquake, so there was no one to help us, help the Deaf people. So psychologically and mentally, Deaf people, no one to support them, no one to discuss with. There was no one to communicate with, so the communication barrier was very, very tremendous in those times. Therefore, in the restoration of their lives, deaf people felt very isolated and despair. The giant earthquake took place ten years ago, but the situation remains much the same today in the following disasters that have followed since 2011. The third point is what governments can do to support the Deaf. According to the – in compliance to the CRPD, all the information to on the disaster on how to escape should come in sign languages that will reach the Deaf people. In disaster relief and support, it should be conducted together with the Deaf organization. Deaf organizations, Deaf people should be included in disaster relief activities. So we ask three things for the governments to do. The first point is when sending information on a disaster or evacuation, always to include sign language in the announcements and warnings. The second point is when making plans for disaster relief or disaster preparedness, always include Deaf organizations in the planning stages. Also when training, when providing training on disaster preparedness, to include Deaf organizations in the planning of the training. And the third point is ensure that the government’s disaster risk reduction system includes organizations of persons with disabilities, Deaf organizations, other disability organizations, in the system itself. The way we think, the people with the same disabilities are the ones who know best what is needed of the people with the same disability. That’s what governments should keep in mind. People with disabilities are not just recipients of support. We can be providers of support as well. So for disaster relief support, we should be included. Disability organizations should be included. But I want everyone to know, there are several points that I want you to know, Japan is a country that experiences lots of natural disasters, earthquakes, typhoons, mountain eruptions, volcano eruptions. We have lots of natural disasters. Right now there are two typhoons approaching Japan right now at this moment. We are really a country that experiences lots of disasters. So the important – I think the important thing is to have a connection, for Deaf people to have a connection with the community around them. When a disaster arises, what the problems that Deaf people encounter in a disaster are actually there in everyday life, and they just become more evident in a disaster. So from everyday life, people with disabilities should have a strong connection with the community around them. I think that’s really important. And there are several new issues. People with disabilities are not all the same. There are women with disabilities, there are LGBT people with disabilities. There are young children, babies with disabilities. And these involve new issues. It’s the same with people without disabilities. We are not all the same. So disaster resilience, disaster risk reduction should take on should consider the aspect of diversity in society. That is another important thing. Thank you so much for giving me this chance to talk to you today. That is all for my side.

>> KOTA TAKAYAMA: Thank you so much for an invigorating presentation. Let’s all give a round of applause to Mr. Kurano. Thank you again. Our next presenters will be introduced by Dr. Danielle Thompson. Danielle?

>> DANIELLE THOMPSON: Good morning. I am originally from Trinidad and Tobago. Trinidad and Tobago is a relatively small island off the coast of South America. And I am honored to introduce our two presenters today from Trinidad and Tobago. They are calling in today from Trinidad and Tobago. They are both tireless community advocates for the Deaf community in Trinidad and Tobago. Their names are Mr. Ian Dhanoolal and Bryan Rodrigues. I would like to invite both Ian and Bryan to the Zoom gallery.

>> IAN DHANOOLAL: Hello, everyone, and good morning. My name is Ian Dhanoolal. I am Deaf. And I am the current president of Deaf Empowerment and Advancement Foundation, abbreviated as D.E.A.F. Thank you so much to Gallaudet University and GADRA for extending the invitation to present to you today about our organization. I’d like to begin by giving you a bit of history about our organization. To give you context, the government had supported efforts to create a dictionary for Trinidad and Tobago Sign Language. This was a two year effort, and at the conclusion of that time, many of the Deaf people who were involved in creating that dictionary decided to create an organization called Deaf Empowerment Organization of Trinidad and Tobago, DEOTT, which was founded in 2010. In 2014 we underwent a name change to the name we are currently operate under, Deaf Empowerment and Advancement Foundation. The mission of our organization is primarily to educate and offer equal access to the Deaf community of Trinidad and Tobago. We currently have a partnership with another organization, called Trinidad and Tobago Association for the Hearing Impaired. This organization is run by hearing individuals, and that organization has a relationship with our parliament. In times of natural disasters, which we encounter frequently, TTAHI is leaned upon by the government to provide information. However, they offer very limited information to the Deaf community. They do offer interpretation on TV. However, that interpretation is offered in signed exact English, which is functionally unintelligible to most of the signing community, as most of the signing community uses Trinidad and Tobago sign language. In response to that, in 2012, D.E.A.F. decided to offer news broadcasts available to Deaf people on Facebook, YouTube, and Instagram, so that Deaf people will have access to information that they don’t otherwise get. We started off with a relatively small audience, but year after year, we have seen more membership, more views, more followers, because our connection to the signing Deaf community of Trinidad and Tobago is so strong. D.E.A.F. provides critical information to the Deaf community, and all of this work is done on a volunteer basis. We do not have any private funding or governmental support. We make these broadcasts with our own equipment, our own backgrounds, our own wardrobes, so this is completely an individual volunteer effort. With that, I would like to turn the floor over to Bryan.

>> BRYAN RODRIGUES: Hello, everyone. My name is Bryan Rodrigues. I am also Deaf. And I’d like to extend a warm hello to the entire group here with us today, those from GADRA, Gallaudet, Vietnam, and Japan. I am one of the cofounders of D.E.A.F., where I work alongside Ian, who you just saw. Again I would like to reinforce that all of our efforts are volunteer. We use our own time and resources to make these videos available about hurricanes, floods, various types of natural disasters that our communities face. We usually have a hurricane annually. Our hurricane season runs from June to about November, and I want to underscore that this is an annual event that we face. We are accustomed to having information be made available to us on TV, but often emergency alerts are made available on radio prior to what’s on TV, so the Deaf community often finds out weather information quite late. As an example, when there is a tropical storm that is developing into a hurricane, that sort of emergency information gets to Deaf people quite late. Similarly when we face floods, Deaf people find themselves in a position of needing information when they’re already in crisis, when they already need food and other disaster supplies. The D.E.A.F. board and other volunteers have undertaken our own fund raising efforts, and we also have our own system of keeping a list of who has emergency supplies and who is able to take people into their own homes if someone in another region needs support. As Ian mentioned, TTAHI is another organization that operates in Trinidad and Tobago, and depending on where the natural disaster has occurred, if there’s flooding, then we can make things like mattresses available. D.E.A.F. maintains a registry of Deaf people’s addresses so that we can get to people’s homes and give them the supplies that they need. And again we do this all on a volunteer basis, because we know that the need exists. Often during natural disasters, we also have to abide by a curfew. The Deaf Trinidad Sports Association has a pretty active football team or soccer team for some of you all on the call, and as it approached the end of the tournament, it was a pretty hot game. We didn’t realize that the government had enacted a curfew that very day. All events had to conclude, because the crime rate had escalated at that particular time in Trinidad and Tobago. The information was only made available by radio, and the Deaf people at the soccer tournament were unaware of the curfew. When we exited the stadium, we were confronted with police officers, some of whom escorted some of the Deaf people home. Some of whom decided to bring Deaf people to the local detention center. So this is an example of the ways in which emergency information is not made available to us. COVID is also something that affected everyone globally. We all know that we were – most of us stayed at home as a safety precaution, and we were able at that time to make videos available to the Deaf community. There are five of us that have makeshift video areas set up for ourselves, and we were able to work tirelessly on making COVID videos for our community. I’ll now turn it back over to Ian. >> IAN DHANOOLAL: I’d like to conclude by sharing the fact that D.E.A.F. primarily needs support for equipment, including things like lights, software, computer, recording equipment. This is key to the operation of D.E.A.F., because as I said, each of us are using our own resources and equipment. So this is our primary need at the moment. We also would like to have a physical office space that we can all use instead of having each of us use our spaces in our homes. This also would serve as a central place for the Deaf community to convene if they need information or if there is a natural disaster or a crisis, and they need some support. Many Deaf people in the community are not comfortable with TTAHI, because many of those members do not use sign language. I should add a bit of context here. In our community, ASL, TTAHI excuse me, TTSL, and home signs are the three primary forms of communication. The people who work at TTAHI primarily only use American Sign Language. They do not have the linguistic repertoire to communicate with people who use Trinidad and Tobago Sign Language or home sign. We need people who have the kind of linguistic range to support people in times of crisis and natural disasters. When D.E.A.F. has approached the government about getting support for our efforts, the government has declined our requests, and only gives financial support to TTAHI. Nevertheless, we continue to do our work in the face of these challenges and still continue to lobby the government for our human rights. Bryan and I still go to WFD events to learn as much as we can from other Deaf organizations, which really heartens us and helps keep us going in our efforts to lobby the government. I’d like to conclude by saying thanks to each and every one of you for supporting us, specifically to Gallaudet University and GADRA. I hope that you’ve enjoyed our presentation. Thank you again.

>> DANIELLE THOMPSON: Thank you so much, Ian and Bryan, for your presentation. I’d now like to ask you to mute your video. Thank you so much. And I’ll now turn it over to Audrey.

>> AUDREY COOPER: Thank you so much, Danielle. I am now honored to introduce our third presenter of the day, the presenter’s name is Tien Tran. Tien is the Executive Director for PARD, which stands for Psycho Educational and Applied Research Center, based in Ho Chi Minh City, Vietnam. Tien, would you turn your camera on, please?

>> NGUYEN TRAN THUY TIEN: Hello, everyone. Good morning, good afternoon, and good evening, wherever you are in the world. In Vietnam it is nighttime right now. And first of all, I would like to say thank you to Gallaudet University and GADRA for inviting me to be here in this webinar and to share about the Deaf community in Vietnam. My name is Tien, and I am living in Ho Chi Minh City, in the south of Vietnam. I went to Gallaudet University with the World Deaf Leadership Scholarship in 2013. And graduated in 2016 with a masters in sign language education. After that I returned to my home country and founded an organization named PARD Vietnam, so PARD stands for Psycho Education and Applied Research Center for the Deaf. We are the first Deaf-led nonprofit organization in Vietnam. And the spirit that we follow is “nothing about Deaf without Deaf”. So this celebrates the meaning of full and direct participation of Deaf people in all decisions that impact our lives. At PARD, we have different activities to achieve our visions and missions. We empower and build capacity for Deaf people. We support and advocate for the human rights of Deaf people. We also provide information accessibility for the Deaf community through programs such as the Sign Language News and The Sign Show. Last but not least, we also build a strong network of Deaf clubs throughout Vietnam. Now, I would like to share with you more about the Deaf community and the disasters in my country. Every year, disasters occur in different part of Vietnam, including floods, salt water intrusion, landslides, and hurricanes. The central part of Vietnam was most affected by flooding. And the flooding happen every year around September to November. In last year, October to November, central Vietnam was hit by consecutive tropical storms and typhoons. Sorry I think the screen is frozen, so I will repeat. Is it okay right now? Yes? So sorry for the Internet connection. Sorry. I just repeat what I just said. In last October to November, the central part of Vietnam was hit by consecutive tropical storm and typhoons, which had brought flooding and landslide to the region, so this flooding disrupted the telecommunication network and electricity, also destroy infrastructure, houses and crops. Many people were dead or missing, while tens of thousands of people had lost their home to rising water. One of the most damaged provinces in the central Vietnam is Quang Binh province. And we contacted the leader of Quang Binh Deaf club. Her name is Trang. And on behalf of them, I would like to share about this story with you all today. So in this province, the Deaf community, they have limited education. Some of them only finish primary education level. Around 30 percent of them do not know sign language. And hence they do not have access to information. In times of crisis and disaster, they often depend on the hearing members in their families and their neighbors. When they know that the flooding is coming, they will move their valuable things, such as motorcycles or rice or other things that is important to them, and they move it up to the attic of their house to avoid water. After that, they will move to stay in their neighbor house which has two to three floors to stay safe, and they only eat raw instant noodles from the package and just patiently wait for the water to come down. In last year’s flood, there was a Deaf single mother who has a little daughter, and when the neighbor informed her about the flood, she asked the neighbor to bring her little daughter to a safe place, and so she stayed back to save her 20 bags of rice. But then the flood quickly came, and she had to climb up to the ceiling beam and stay there, and sit there and wait. She was hungry, cold, and sleepless for about two days, until the police came to save her. But unfortunately she lost all her 20 bags of rice. There is another story. These are hearing parents who has a Deaf son, and when the flood is coming, they were busy to save their things. And then after that, they moved to their neighbor’s house to be safe, but then they forgot to bring the Deaf son along. So the water level quickly rose, and the Deaf son had to climb up to the ceiling and kept crying. He stayed there, and until the police came, and they had to take out the roof of the house to save him. If they came a little later, he could have died. So in those times, the Deaf community are cut off from resources, such as food, life jacket, which is very important, also they do not have fresh water to drink. But most importantly is their communication. So double crisis including disaster and the COVID 19 pandemic has deepened the impacts on Deaf people’s lives. Lockdown measures have been imposed for the last four months. Businesses have closed which caused many Deaf people to lose their jobs. Travel restrictions made them unable to go back to their hometown, and they still had to pay for their rent and food, without earning any income. The government has released funds and food to support its citizens, and our organization, PARD, has spread this information and consulted Deaf people to get them support. However, we know that there are still many Deaf people out there that we have not reached yet. And because they do not have access to information. So that’s why we are trying our best to get connected with the local Deaf clubs to have as many contacts with Deaf people as possible. So at PARD, we have the Sign Language News Program to disseminate information to the Deaf community, so that Deaf people can get information in times of crisis. We also provide free interpretation services in time of crisis for Deaf people. We and Deaf people around Vietnam donate funds and food such as rice to the Deaf community in central Vietnam. However, it is not enough, and we need more sustainable resources. So we have discussed with the Deaf community, and these are the resources we need to support them. First we need to provide training for Deaf people, it is important to know how to protect themselves and to prepare to cope with disaster. We also need resources such as life jackets, headlamps, emergency resource. We also need emergency straw or bucket filters to have clean water to drink in those times. Inflatable solar light and phone charger to support the communication of Deaf people so that they can get connected with each other. We also need medical kits and hygiene supplies. Last but not least, we also need the financial support for food and restoring houses after the disaster. Now the rainy season is already beginning right now in Vietnam, and just yesterday, a storm hit the central part of Vietnam. So we hope that we will get the resources that we need to support our Deaf community. Thank you, everyone, for watching my presentation. And if you want to get connected with us, you can send us an email at pard.vn@gmail.com, or on our Facebook page, PARD Vietnam. Once again, thank you so much.

>> I’m waiting for the Vietnamese Sign Language interpreters to return to the screen.

>> AUDREY COOPER: Great. Thank you so much. Thank you again, Tien, for a wonderful presentation. To the audience, you’ll have a chance to ask questions of Tien a little bit later. We are going to conduct our Q&A in a couple of components. The format of Q&A will be that each organization will respond to your questions one at a time. We’ll go in the same order of their presentations, so we’ll start with Mr. Kurano. Allow time for the audience to ask their questions of Mr. Kurano. Then we’ll turn the floor over to Mr. Rodrigues and Mr. Dhanoolal. Again we’ll have a few moments to ask questions of them, and then we will end with time for asking questions of Tien. At the end of the Q&A portion, the organizing committee will return to the committee for concluding remarks. Now, about how to ask your questions, we apologize that we will not be able to have participants turn on their cameras to ask questions in sign languages. Instead what we ask is that you type your questions into the Q&A box. You can use Japanese, Vietnamese, or English to type your questions in. I’ve already seen how active you all are in the chat box, already using your respective languages. And some of you have already put questions into the Q&A. Kota, Danielle and I will moderate those questions. Kota?

>> KOTA TAKAYAMA: Hello again. As Audrey said, we will now move into the Q&A portion of our program, starting with the Japanese representatives. Mr. Kurano, could you please come on screen? We have a couple of questions for you, Mr. Kurano. The first question, we’ll start with the simplest. How many Deaf people perished as part of the 2011 earthquake?

>> NAOKI KURANO: Thank you. Okay. Thank you for the question. In the 2011 earthquake, according to survey, it says that 75 people, Deaf people died. However, the Japanese standard for hearing disability, compared to the world standard, is very strict. Hearing disability is like 75 decibels in both ears. It has to be over 75 decibels. WHO says 50 decibels. The Japanese standard is over 75 decibels, so under that standard, 75 people died. But actually if we go by the WHO standard, I think the number would increase much, much more. So the definition, according to ours, the Japanese standard is 75 people.

>> KOTA TAKAYAMA: Thank you for that response. The next question asks about how the relationship is between JFD and the Japanese government. Could you tell us whether it’s a relatively positive or a relatively tense relationship?

>> NAOKI KURANO: Thank you for that. That’s a good question. The Japanese Federation of the Deaf, in relation to disaster risk reduction, every year we send petitions to the government, we want to do this, and gradually things are progressing. We exchange opinions. They ask us questions, and they’re beginning to understand us. Two years ago there was a big actually progress. The meteorological agency of Japan, when there’s a typhoon or a big earthquake, they have the representative comes on television and the media and explains the situation. And until now there were no sign language interpreters during this press conference. But starting from last year, 24 hours, anytime, whenever they have this press conference, they would always have a sign language interpreter. And we have been continuing this conversation with the government. So it’s slow progress, but things are progressing.

>> KOTA TAKAYAMA: Thank you again for that response. Our final question, in Japan, is there specific DRR, disaster risk reduction, education and training, or any emergency management training available for Deaf Japanese people?

>> NAOKI KURANO: You’re talking about our organization, the Japanese Federation of the Deaf, or Japan in general?

>> KOTA TAKAYAMA: Specifically offered by well, either, offered by JFD or available in general for Deaf people for training that’s focused on Deaf people. A certificate, for example, anything offered by a college, a university, or training institution.

>> NAOKI KURANO: All right. The government and local administrations, universities, do not have any special training for Deaf people. So the Japanese Federation of the Deaf toward Deaf people and to the community. We are trying to make a program so that we’re trying to make a program towards the Deaf people and the community to train people. To train the community about Deafness, the problems that Deaf people confront, and simple signs that people can communicate with. We have pamphlets like this showing simple signs, how to communicate with the Deaf people. The Japanese Federation made this and distributed to all local communities. So the hearing people in community can get together with the Deaf people. Deaf people can teach hearing people around them using this pamphlet, but unfortunately we have to start doing things like this from our side, and there’s no action from the government or local administrations, but it’s the first step.

>> KOTA TAKAYAMA: Thank you so much. There’s a follow up thank you so much for the additional response in relation to that question. There’s also a follow up. Is there any interpreter training in disaster risk reduction or emergency management? Again this question specifically relates to interpreters and interpreting.

>> NAOKI KURANO: For interpreters, we have terminology related to disaster, for example, signs specifically related to disasters. And also I think interpreters need more knowledge about disasters. So this question is very important. At present we are still working on as I said, the relationships with the community, so that the community knows about Deaf people, but as you say, the next step would be training interpreters about knowledge, more knowledge about disasters, and how to sign the different things related to disasters.

>> KOTA TAKAYAMA: Thank you again, and thank you so much, Mr. Kurano, for answering our audience questions. It’s now time to turn to the Trinidad and Tobago team. Thank you again. Dr. Ochoa, would you please join on screen?

>> DANIELLE THOMPSON: Hello. Ian and Bryan, you can turn your cameras on. Great. We have three questions in the Q&A feature for you. The first question asks what kind of support does D.E.A.F. need to recognize D.E.A.F. and deaf leaders, versus TTAHI? Bryan?

>> BRYAN RODRIGUES: I think the type of support and resources that we need is primarily in awareness and training. Because of the nature of our work, we want to professionalize our videos. We’ve been doing this for 12 years, and have been learning on the fly, and we’re getting pretty old, so we need to turn this over to the next generation. So we also need to encourage younger members of our community to take on this work. Ian?

>> IAN DHANOOLAL: I’d like to add to this too. I would also like Deaf young people to I think young Deaf people would be more motivated if they saw that our videos were more professional. Again our goal is to provide support to the signing Deaf community and in terms of training, this is not something that many people in our community have money for. So we have tried to send people out or to send messages to different companies, asking for support, but we have not been lucky enough to get that type of financial support so far. However, this past summer, we were able to get free registration for a camp that was offered for tech skills every Sunday, so this was fantastic for the young Deaf kids in our Deaf community here. So they learned all kinds of computer and camera editing skills, storytelling skills. So we certainly do see some more motivation among young people in our community, and we’ll keep trying. We’ll keep trying to send people to different camps and connect with different companies.

>> DANIELLE THOMPSON: A clarification. When you mentioned the companies, do you mean to gain employment or for training?

>> IAN DHANOOLAL: Oh, good question. When I say companies, I mean primarily to ask for financial support. When our young people want to take classes, because D.E.A.F. does not have financial resources to offer that kind of support. Again we are 100% volunteer based. We can share our knowledge, but we can’t offer that type of financial support or travel assistance if people need transportation to get from home to wherever these classes are offered, so we do reach out to companies to try to get that support for Deaf people. Bryan and I have also thought about employment and training with these different companies, but we also have so to that end, we have asked companies to give workshops at least so that information will be more accessible to Deaf people. We also think that this will help them become more aware of Deaf culture and more aware of sign language and Deaf people’s livelihood. So this is something that we also want them to be aware of.

>> DANIELLE THOMPSON: Thank you. Second question: Do you have any contact with other Caribbean Deaf communities? And if so, do you collaborate with them in any way?

>> BRYAN RODRIGUES: I’ll take that one. The two of us just created or we have the idea or plans to create a Caribbean Federation of the Deaf. We have decided on who the president would be. Ian would be the director. This would be an association of 15 Deaf communities, Haiti has agreed to be a member. Jose Nell has agreed to be a part of the organization, and while there is a lot of interest, because of the fact that we face a lot of natural disasters, things get in the way, and many of us don’t have the money to be able to get together. So there is a lot of desire and interest in it, but communication is also kind of hard, so it’s certainly on our minds, and all of our interactions have been very positive. Everyone is working towards improving education and improving schooling options and using sign language in their schools. So we’re all hopeful for a better and brighter future.

>> IAN DHANOOLAL: I am a sign language teacher at the University of West the West Indies. I teach there with a person named Ben, and one of our students named Rachel just did a research study about earthquakes and disaster response. She asked if I could collaborate on a research project in St. Vincent, where there was a recent volcanic eruption. I agreed to support this project, because I figured it would be easier for us to communicate if I were to work with her. This was about is it two years ago now? This was 2019. We went to the area, found and met with some Deaf people, asked about their experience after this disaster, after the eruption, and many of them said that they were not informed. They had no advance notification, and no access to information about the eruption. And we were astounded that they really had been told absolutely nothing. They did have interpreters on TV, but they said that the interpreters were not very fluent. They also added that they were hearing interpreters, so while someone was on screen, it was not actually useful.

>> DANIELLE THOMPSON: Thank you so much for your responses. This is all the time that we have today, and we will now turn the floor over to the Vietnamese team. Audrey?

>> AUDREY COOPER: Tien, would you like to come on camera? Great. So I will read the questions that we have for you. We’ll try to answer as many as we can in the remaining time that we have. Similar to the questions that Dr. Thompson just asked of the Trinidad and Tobago team, is there any collaboration across the country to work with other associations, or to work on getting support for DRR information?

>> NGUYEN TRAN THUY TIEN: Thank you for all the questions. And, yes, collaboration and partnership are important. And we are building a strong network of networks throughout Vietnam so that we can get in contact with Deaf people in different part of the country. Also we also partnership with disability-led organizations, and so that we can get the support and advocate for the movement of people with disabilities so that the government can pay attention and focus on the Deaf community. We also need to collaborate with experts to give training on survival skill or be prepared for coping with disaster and to give training for Deaf people so that they can know how to protect themselves and to prepare in times of crisis.

>> AUDREY COOPER: Thank you. We have a follow up question. Since your organization works with other organizations, are there opportunities for Deaf people to take trainings that are led by Deaf instructors or trainers?

>> NGUYEN TRAN THUY TIEN: Yes. And our activities and training, we have Deaf trainers who use sign language so it will be easy for Deaf people to interact with the training. And we also give training to deaf leaders in local Deaf clubs so they can be the trainer to provide the information and the knowledge to the Deaf community in their local provinces.

>> AUDREY COOPER: It seems like you truly have a fantastic network among Deaf leaders who can serve as these instructors. Have the Deaf leaders already had any DRR training themselves?

>> NGUYEN TRAN THUY TIEN: No, they haven’t. And there is one in the north of Vietnam, but they were trained by hearing people, and so the training approach and the explanation that they given by hearing people were not suitable for Deaf people, and so that’s why it’s not suitable, and the knowledge that they get is not much.

>> AUDREY COOPER: Thank you so much. And we have one last question in the short time that we have left. Are there any interpreter training programs about or interpreted training programs about first aid and emergency response?

>> NGUYEN TRAN THUY TIEN: Yeah. I think for this question, this training is really important. But for us we think that we should train Deaf people, and because so for the size regarding disaster and this too, we are lack of size, and we need to develop the size for this too. And after that, Deaf people, yeah, we do want to do the training better.

>> AUDREY COOPER: Thank you so much, Tien, for this discussion.

>> NGUYEN TRAN THUY TIEN: Thank you.

>> AUDREY COOPER: I would now like to ask you to turn your camera off momentarily. And I will wait for the Vietnamese interpreter to return on screen. We’ll now close the program. I’m sure I feel the same as many of you, which is that you want to have even more discussions and ask more questions of our presenters. All three presentations gave us a great deal of information today that I believe all of us can use. I would say that we can call this a call to action. We now have a list of requests, and so those of us who have joined today can take this as guidelines for what to do to lobby our governments, how to provide support, and what we can do to support all of these organizations’ activities. For GADRA and Gallaudet University, or on behalf of GADRA and Gallaudet University, we wish you safety and good health, but before we close, I would also like to thank a number of people who made today’s event possible. For that, I will turn this over to Kota and Danielle.

>> KOTA TAKAYAMA: Thank you in particular to each of our presenters today. Again each of you did an outstanding job and provided such worthwhile information. Thank you Bryan and Ian from Trinidad and Tobago. Thank you Naoki for the information from Japan, and thank you Tien for the information about Vietnam. I’d also like to thank your respective Deaf communities in each of your countries. Thank you so much. I’d also like to again thank GADRA for your work efforts and partnership, as well as for what you do in your organization. And of course I would like to thank the Gallaudet University provost, president, and dean of faculty, Dr. Khadijat Rashid. Thank you so much.

>> DANIELLE THOMPSON: Hello again. I would also like to thank a few other people. I’d like to thank the Gallaudet University School of Education, Language, Culture, and the School of Civic Leadership, Business, and Social Change. I’d like to thank Gallaudet University communications for the outstanding job they did, and Gallaudet technology services, in particular Mr. Matthew Terry for his support. Thank you so much. And I have to thank Miss Sonia Holzman, our IDMA, international development master’s program support specialist and outreach liaison. And the last and certainly not least, I would like to thank our entire team of interpreters today who truly made today’s event possible. Thank you so very much. So now we would like to have everyone turn their cameras on for a final goodbye. Thank you so much, everyone. Thank you all. That officially concludes the session. (End of program.)


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Transcript for “20 Years of Disability Rights & Inclusion in Disaster Management: How it Started”

>[AUDIO DESCRIPTION]: 20 years of Disability Rights and Inclusion in Disaster Management: How it Started

>>MARCIE ROTH: I’m Marcie Roth and I’m the Executive Director of the World Institute on Disability. I got involved at the intersection of disability rights and disasters just in the immediate aftermath of the 2001 9/11 terrorist attack. I was the Director of Advocacy and Public Policy for the National Council on Independent Living and on September 13th of 2001 I got a phone call from colleagues in New York City very concerned because they had frozen the area around Ground Zero, meaning that the only folks who could get in were people who could show identification they lived there, everyone else was not allowed in. And while this made a whole lot of sense for overall management of a very horrible and chaotic situation, for people with disabilities, thousands of them, it meant that personal assistance services, the people who provided personal assistance services weren’t able to come in. Paratransit, accessible transportation wasn’t allowed in. Unintended consequences were starting to become known and my colleagues in New York asked me in my role with the National Council on Independent Living if I could help them. After working in disability rights my whole career, I suddenly realized that I didn’t have the faintest idea what happened for people with disabilities and disasters. And so, I started calling people and trying to get some guidance because really, nobody knew, there were very few people working on disability and disaster issues at that point. I think the things that concerned me the most were that people with disabilities were essentially not considered. While I don’t think it was intentional that the supports and services that people with disabilities needed were blocked, but when I tried and when others tried to start developing some systematic approaches it became clear that many people considered disability inclusion in the planning to be a nuisance, to be unnecessary,  whether it was involving people with disabilities at the planning tables in local communities, making alerts and warnings accessible so that people had the information that they need to take personal protective measures and to help their community, you know for people with mental health disabilities, mental health resources were being provided to people with new experiences but those same resources were not equally available to people who had a mental health disability before. You know, considerations about how people got out of multi-story buildings, sheltering became a very obvious a point of failure. There was an assumption that people with disabilities should all go to hospitals or medical facilities when in fact, most people with disabilities need assistance to maintain their health in a disaster, like everybody else, but certainly don’t need acute medical care, unless they’ve developed an acute condition or unless they’ve been injured, like anybody else. You know, the presumptions that are made about people with intellectual disabilities or people with communication disabilities, you know all those assumptions are magnified in a disaster. When you have a disability, you have to anticipate what problems might come up – we are actually great emergency managers, we probably have more practice at it than people who don’t have disabilities, and so we’re actually an asset in our community when thinking about planning for disasters. In that period following 9/11 was the beginning of a 20-year journey that has really been an opportunity to do a deep dive into how we can improve outcomes for people with disabilities but for the whole community in disasters.


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Transcript for “20 Years of Disability Rights & Inclusion in Disaster Management: From Katrina to Ida”

>MARCIE ROTH: Benilda Caixeta did not need to die in that disaster, hers was a preventable death. I’ve come to learn that people with disabilities are, the UN says two to four times more likely to be injured or to die in a disaster than people who don’t have disabilities, and it’s not because of their disability.

>>[AUDIO DESCRIPTION]: 20 years of Disability Rights and Inclusion in Disaster Management: From Katrina To Ida.

>MARCIE ROTH: August 29th, 2005, Hurricane Katrina made landfall in Louisiana. A dear friend, Susan Daniels called me on the day that Katrina was making landfall and she said Benilda Caixeta had been trying to evacuate from her apartment for three days. She was an active community advocate, worked in disability rights and knew how to navigate systems. She had tried for three days to get a paratransit ride to evacuate from her home, she was someone who took the evacuation very seriously. She tried and tried and paratransit you know she kept being scheduled but nobody showed up – the night before Katrina made landfall, she called 9-1-1 and told them that she was having chest pains. Susan asked me to help Benilda, also known as Benny, I was on the phone with Benny as were other people in her life on and off throughout the day. And try as we might, we were unable to get any help to her because by this point all of the first responders were locked down, sheltering in place. And that was absolutely the right thing to do, but she needed help. We were on the phone throughout that day and I saw that the hurricane, as bad as it was, starting to pass and I said to her, it looks like things are going to start to calm down and you know people know you’re there, and you know somebody will surely be there soon to assist you. All of a sudden Benny said to me, the water is rushing in. At that point we lost phone contact. Benny did not survive Hurricane Katrina, she drowned, and she was found five days later. Her death really rocked me, I kept wondering if there was you know something else I could have done. Benilda Caixeta did not need to die in that disaster, hers was a preventable death. I’ve come to learn that people with disabilities are far more likely, I think you know the UN says two to four times more likely to be injured or to die in a disaster than people who don’t have disabilities, and it’s not because of their disability. It’s because of all of the systemic bias, the assumptions, all of the beliefs about people with disabilities, and most certainly multiply marginalized people with disabilities. Hurricane Ida came ashore and was devastating to first Louisiana and then the gulf states. I had made some very dear friends immediately following Hurricane Katrina – a day before Ida was coming ashore, they contacted me and said, our lift-equipped van broke down, and we rented a van but before we could go and pick it up, we were told that FEMA has taken all of the rental vehicles, and we have no way to evacuate. And that began a 24-hour period in which a bunch of people frantically tried to figure out how to help them to get to safety. We worked through the night and into the morning that Hurricane Ida was about to make landfall. Miraculously they evacuated to the other side of town to a hotel 10 minutes before this category 4 hurricane made landfall – 10 minutes. I was so…scared, devastated that they wouldn’t make it out and that you know once again, exactly 16 years after Benilda drowned, that they were going to have the same horrible death. I was hugely relieved and very grateful.

We learned that a number of nursing homes in Louisiana evacuated, but rather than evacuating folks to another congregate facility, they evacuated almost 900 people from a bunch of nursing homes to a warehouse, without adequate staffing, and four people died. So you know, what have I learned? What sort of progress have we made? I mean we’ve learned that rather than thinking of people with disabilities as being a liability in disasters, that we not only need to be at the table, but we need to serve in leadership roles because we really are very knowledgeable about anticipating and solving problems in disasters. But I think we’ve also very sadly learned that we are expendable, we are no more valued now than you know in all the years that I’ve been doing this work – as I look back on 20 years of trying to change outcomes for people with disabilities in disasters, 20 years ago people with disabilities were disregarded, this week people with disabilities – things are no better for disabled people in disasters.


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Deaf Leadership in International Disaster Policy: October 29, 2021

The second event in our series in collaboration with Gallaudet University, Deaf-Led Disaster Resilience.

Over the last decade, national governments and international human rights groups have devoted increasing attention to Deaf and disability inclusion and leadership in disaster and humanitarian contexts; however, much of the available policy addresses high level rights, not the mechanisms, technologies, or systems necessary to operationalize accessible language and communication processes across all aspects of disaster management. This panel centers on ways that policy can be improved to advance Deaf leadership in disaster management, including the infrastructures and funding mechanisms needed to support implementation.

Event Details

Friday, October 29, 2021

1 PM UTC/ 9 AM EDT/ 11 PM NSW

American Sign Language, International Sign interpretation, and English with live-captioning (CART) will be provided.

Register: Link to register for the Deaf Leadership in International Disaster Policy Event

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Featured presenters

Leilani Craig, Co-Founder, Craigs Consultants International. Disability inclusive Disaster Risk Reduction (DiDRR) Consultant, Researcher, and Trainer

Leilani Craig, a woman with light skin and dark hair, smiling at the camera with long brown hair and a pair of sunglasses pushed up at the crown of her head.

As a practitioner in Disability inclusive Disaster Risk Reduction (DiDRR), Leyla Craig has been involved in local and international projects that focused on the inclusion and resilience of people with disabilities, with particular attention to Deaf Communities.  Amongst some of her work in the last 9 years, included is:  working on the “Increasing the Resilience of the Deaf Community in NSW to Natural Hazards and Disasters”, a collaborative project between the University of New South Wales (UNSW), The Deaf Society NSW, and NSW Emergency Service agencies; serving as an Australian Red Cross volunteer under the Australian Volunteers for International Development (AVID) Program working with Deaf Communities and natural hazards in the Philippines;  and working with the University of Sydney as an Alternate Team Lead for the “Disability and Disaster: Empowering People and Building Resilience to Risk” project.  The latter work, funded by the Global Resilience Partnership, focused on research and practice supporting DiDRR in Cambodia, Thailand, and the Philippines, led to a nomination for the prestigious 2019 United Nations Sasakawa Award for Disaster Reduction, and an invitation from the United Nations Development Programme (UNDP) and United Nations Adaption to Resilience (A2R) to upscale this work that was recognised as an example of best practice for inclusive DRR. At present, Leyla is a PhD research candidate at The University of Sydney focusing on Deaf Communities and Organisations’ capacities to respond to and support those affected by disasters triggered by natural hazards and works in Disability Inclusion for Fire and Rescue NSW.

Emmanuel Jacq, Founder and Executive Director, International Deaf Emergency (IDE)

Headshot of Emmanuel Jacq, a white man wearing a blue suit with black tie.

Emmanuel Jacq is the founder and executive director of International Deaf Emergency (IDE). Through the organization, Emmanuel organized to set up the first “accessible” humanitarian camp for over 400 Deaf refugees in Haiti after the 2010 earthquake. Around 170 Deaf families were given a permanent house later, as well as an accessible school for Deaf children. In addition, Emmanuel also served as project supervisor for the Disability Rights Fund (DRF) and Haiti’s deaf community; having created and/or trained 13 local organizations and formed the National Deaf Association in Haiti.

In addition, Emmanuel was moderator and expert on a roundtable at an EU workshop about emergency policies for persons with disabilities, especially related to the Deaf with the European Network for Psycho-social Crisis Management – Assisting Disabled in Case of Disaster (EUNAD). He also served as an observer and International Disability Alliance representative at the Third UN World Conference in Sendai (Japan) in 2015 where the Sendai Framework for Disaster Risk Reduction 2015-2030 has been adopted. Since that time, Emmanuel has advocated  for inclusive humanitarian action for Deaf people with various organizations, such as serving as a member of the Reference Group on Inclusion of Persons with Disabilities in Humanitarian Actions (IASC), as well with the World Federation of the Deaf (WFD).

About GADRA

GADRA is a collaboration between disability-led organizations, foundations, corporations, and other allies to identify local disability-led organizations and their disaster-impacted communities, then link partners to accelerate assistance and resources, both during and after disasters.

Link to GADRA main page

Link to the Deaf-Led Disaster Resilience event series page


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What’s Up WID: Intersectionality Between Racism and Ableism Transcripts


Ashley Inkumsah:    Hello everyone. And welcome back to What’s Up WID: the World Institute on Disability Podcast, where we discuss what’s up in the disability community across the globe. On today’s episode, I’m super excited to share my very fruitful conversation about the intersectionality between racism and ableism with the wonderful Nikki Brown-Booker. Nikki is the program officer for the Disability Inclusion Fund over at Borealis Philanthropy. And she’s also a biracial woman of both Black and Filipino descent living with rheumatoid arthritis. We talked about Nikki’s experiences with respect to her identities as a woman of color with a disability and how the systems of racism and ableism operate together to undermine people of color with disabilities. And I hope that you enjoy our conversation.

    Thank you so much for joining me, Nikki. I am excited to have this much-needed conversation about the intersectionality between ableism and racism. And before we even dive into my questions, the first question that I always ask all of our guests is always, how are you doing today?

Nikki Brown-Booker:    I’m good. It’s a little bit of a cloudy day in the Bay Area, but it’s really nice. And I’m very excited to have this conversation.

Ashley Inkumsah:    Yes, me as well. So as a biracial woman of Black and Filipino descent, and also having a disability, how would you say that you have had to navigate the world in respect to those identities?

Nikki Brown-Booker:    Such an interesting question. You know, I feel like when it comes to navigating the world as a biracial person and a person with a disability, that often you’re asked to choose which identity you happen to be at any particular time or moment, which I find really challenging to have to do. I’m not just a person with a disability during any particular time or moment. I have multiple identities and I’m all of those identities all the time. So I think that that’s been one of the biggest challenges of having multiple identities that are really obvious to people. They’re obviously visible. Kind of feeling like I have to choose which one I’m being at any particular time. I also think that that’s not just something that happens in general.

I mean, it happens even within my own family structure, or even with like friends or at school. I have people ask me all the time, do you identify with one particular identity more than another? And I’m like no. No, I don’t. And it’s like why wouldn’t you even ask that question? Yeah. So, but it happens all the time, all the time. So I think that’s been one of the more challenging things about having a multiple identities. And also just like, when I’m in a particular group, say I’m hanging out with like a group of Filipino people or something, sometimes they’re like you don’t look Filipino. Are you really… Do you really belong? Right. So, and that happens in many different settings. Like do you really belong because you don’t either look a certain way? Or I’m not quite quite sure why you would identify as this or that. So that’s something that happens quite a bit.

Ashley Inkumsah:    Mm-hmm (affirmative). And have you felt pressure to have to prove yourself either way or the other into one identity?

Nikki Brown-Booker:    Yes. All the time. I do. I think that happens a lot. I think that happens more with kind of my ethnic identity than maybe with my disability.

Ashley Inkumsah:    Oh absolutely.

Nikki Brown-Booker:    Because my disability is really clear and obvious, but sometimes when… I remember this happening when I was in like middle school, being kind of by some of the other Black students and not feeling like I was really part of the group. Once, someone actually told me “You don’t really speak like a Black person. You’re not speaking in slang or like everyone else.” I’m like, well, my mom really taught me not to speak in a certain… with regular English and not to use a lot of slang. That’s just how I was brought up.

    And so I’ve had that experience and I’ve had that experience from the other side too, being Filipino and being mixed. I think a lot of Filipinos are kind of racist against Black people. And so there’s been some experiences there, where I would have to prove that I really was Filipino, that I had a Filipino mother, that I grew up with a very strong Filipino family. I mean, for me, growing up as a child, I spent more time with the Filipino side of my family than with the Black side of my family. Because my Black side of my family were from the South and Mississippi area. Whereas, all of my mother’s family literally lived within like two miles of my house. So I saw my Filipino relatives virtually every day. We were in school together, with my cousins and went to my grandmother’s house every Sunday for dinner. So..

Ashley Inkumsah:    Yeah. And how have you navigated all of these challenges that you’ve faced, fitting into these identities and having to feel like you have to choose between one or the other? How have you been able to navigate that and turn that kind of on its head?

Nikki Brown-Booker:    Well, I feel like I pushed back against people about that all the time. Having people ask me to choose or wanting me to choose or act a certain way, I act the way I am and who I am. And if they don’t like it, then they don’t like it. I’m not going to change or try and be someone that I’m not, or be different than who I am. And also, not deny a part of me because someone else or some group wants me to do that. So I kind of push back against that. People ask me what my nationality is or ethnicity is. I always say I’m Black and Filipino. They asked me about my disability. I’m pretty open about answering questions about that. So, I’ve never denied any part of who I am, even when people have wanted me to.

Ashley Inkumsah:    Yeah. I totally agree. I mean, there’s no one way to be a Black person. There is no one way to be a Filipino person. And there is no one way to be a person with a disability. And it’s really disconcerting that people feel that people who are multiply marginalized have to even be a monolith, but I think it’s really commendable and admirable that you have that self-assuredness and you refuse to choose and you refuse to let other people define who you are. How would you say that the systems of racism and ableism are interconnected?

Nikki Brown-Booker:    Good question. Well, I feel like they’re definitely very connected to each other. I mean, anything that makes you feel less than, or an other, and any type of discrimination really is a problem. And I feel like when you have multiple ethnic identities along with a disability… But sometimes I feel like when you’re talking about cross movement to work, I think a lot of times people in a particular movement haven’t really brought in people with disabilities as much. Or they see the movement as separate, but they really aren’t separate. There’s ableism that exists within the Black community, the Filipino community, just other types of communities. Ableism to me is something that is kind of universal in a way, across communities, and no one’s taught how not to be ableist. I think people are more taught how to be ableist as they’re growing up.

    So I feel like that exists in almost all communities. And then, intersecting that with racism, so you would have this… For me, I feel like I’m always having to prove that I’m smart. I’m always having to prove that I can speak intelligently or that I can be whatever I am or who I am or what I want to be. And because I’m always rubbing up against racist ideas and white supremacist ideas and ableist ideas that somehow I’m not as good as someone else because of the color of my skin or my physical disability. I don’t know if that answers your question but…

Ashley Inkumsah:    Yes. That did answer my question very comprehensively. This time, last year, we were really having this conversation. We were having a so-called reckoning with race, and we were having a lot of these conversations about racial justice. Why do you think that the racial justice conversation has to include people with disabilities?

Nikki Brown-Booker:    Well, I think it absolutely has to include people with disabilities because white supremacy is everywhere. And white supremacy says that you’re less than if you are not, quote unquote, what they would think as normal, whatever that looks like or is. I’m not quite sure what that’s supposed to be. And so I feel like where racial justice movement really needs to bring people with disabilities, really active into that movement, because it’s the only way that we’re going to win, is if we work together. And fighting those ideas of white supremacy and fighting those ideas of ableism and racism that… And also, I feel like those movements really need to also address their own ableist ideas and really work through those so that people with disabilities really feel understood and included within those movements. And like I said, the only way we win is if we work together.

Ashley Inkumsah:    Mm-hmm (affirmative). Absolutely. I think definitely it has to be said that racism creates disability in a lot of cases, right? That’s why Black and brown people account for the most disabled people because in a lot of cases racism creates… Like one system really can’t exist without the other. And if we look back in history, some of the earliest traces of ableism occurred during slavery time where the concept of phrenology was really pervasive. The idea that the slaves were born with inferior skulls, like the composition of their skulls is why Black slaves were inferior to whites. The way that Black people were characterized as being hysterical and biologically predisposed to being uncivilized and this was what the notion was. The stench of that, the remnants of it is still very much pervasive. And the vestiges of it is still very much here to stay and yeah, like one system cannot exist without another. As long as ableism exists, racism will always exist. And yeah, definitely those societal barriers, only continue to create disability, which is why we all need to come together to fight for each other really. And-

Nikki Brown-Booker:    Absolutely.

Ashley Inkumsah:    How do you think that people with disabilities from different intersections can come together to fight for disability justice? How can that start to happen?

Nikki Brown-Booker:    Well, I think that just having a conversation about it, I think is really important. I feel like that conversation is starting to be had, but I also really felt like, we need to have more communication together and with each other to really see where the commonalities in our movements are. And also people with disabilities can be racist, and people who are a person of color could be ableist. So, until we actually start having the conversations about what that looks like, what that feels like, and really trying to bring some understanding to each other, then we’re always going to be fighting against each other. Like I said, we have to work together to win. And I feel like really actually having sometimes hard, challenging conversations with each other about those things is really, for me, it’s so important and really foundational to the work that needs to be done. And I feel like when we start having those conversations and start having like understandings and meanings behind what that feels like for each other, then we can really come together and actually start working together.

[intermission]

Ashley Inkumsah:    WID has recently relaunched our new and improved blog, where we tackle current events, affecting people with disabilities, from the Free Britney movement, to why people with disabilities don’t want to go back to normal, to disabled TikTok creators that you need to be following. There is no shortage of content. So visit our website today at http://www.wid.org/news/blog, to catch up on our latest blog posts.

[end of intermission]

Ashley Inkumsah:    From a perspective of a business, why is it important that companies and businesses and corporations that their diversity and inclusion initiatives include people with disabilities? Because a lot of times, people disabilities are left behind when people think of diversity and inclusion. Why is that so important that people disabilities are included?

Nikki Brown-Booker:    Well, it’s hugely important because I mean, there’s a couple of reasons why I think it’s important. One, if you have people with disabilities who are actually working for you and in your business, then it’s going to force you to actually really think about access within your own companies and making sure that all your workers have equal access to all the things that they need. And you don’t really get that until you have someone who’s working there who might need something as minor as having their computer put up on a stand so it’s at the right eye level, right? We’re not talking like we have to do major, expensive changes or anything. Sometimes access is very, very minimal. I use two pencils for typing that’s a 30 cents solution, right? For access.

    So I think for companies, having people that are people with disabilities working there, it makes people feel included. It’s also they’re really missing out on really good skills and opportunities from people, if they’re not really incorporating people with disabilities into their workforce. I mean, people with disabilities have a lot to offer the community and also have a lot to offer businesses. And it’s like you don’t know that you’re missing out, sometimes you don’t know what you don’t know. And I really feel like businesses really need to think about really bringing more people into the community, into their work. And that’s one of the ways that we combat ableism.

Ashley Inkumsah:    Absolutely. I totally agree with you. And, personally, I would love to hear more about your work at the Disability Inclusion Fund team at Borealis. Can you tell us a little bit about what you do and how you got involved in the philanthropy space?

Nikki Brown-Booker:    Sure. Before I started in philanthropy, I was an executive director at an organization in Berkeley called Easy Does It Emergency Services. So I was on the other side of writing grants and trying to get funding for my organization and understand the challenges and the struggles of writing grants and trying to get money. And I was really interested in learning more about the other side of that picture and learning more about philanthropy. So when this position opened up, I was really excited and applied for it. And I think one thing that’s really unique about Borealis philanthropy, or as an organization in particular, is that they really try to hire people who have lived experiences of the communities that they’re serving, that they’re basically giving to. And so I think that was one of the things that attracted them to me is that I’ve been an advocate in the disability community for probably well over 20 years and really understood the community, have lots of lived experiences.

    So, and I use that in my work for the fund on a daily basis. I feel like a lot of the organizations that we’ve given money to, I understand their work that they’re doing. I, either, understand it from a perspective of… Understanding what those services look like because either I have received services or I’ve worked to give those types of services. And also just understanding the policies behind different types of work and understand advocacy and have done lots of organizing on disability issues. So I think that really made me well-suited to work in philanthropy because philanthropy, in general, doesn’t really understand the disability community and the needs that they have. So I feel like one of our goals of the fund is really to teach philanthropy about disability and for also the disability community to learn more about philanthropy and how that works.

Ashley Inkumsah:    Mm-hmm (affirmative). Yes. And I want to circle back a little bit because we talked a lot about your cultural identities, but I want to discuss more about how it was like for you growing up with a disability and what were some of your experiences and what support systems did you have? So if you could share that with us, that would be great.

Nikki Brown-Booker:    Sure. So I come from a really big family, I’m the youngest of eight kids. Yeah. And both my parents are also come from big families. So my mom is the oldest of nine kids. And I think my dad was the second youngest of eight kids. So, I grew up in a really big family…I have six brothers and one sister. So I really think that it really shaped my experiences as a person with a disability. One, I know for a lot of people with disabilities, their families tend to be really over-protective of them. I think my family was kind of a little bit of the opposite. They’re always like…Brothers were like, you can do anything that you want to do, just go and do it. And always really supportive.

    As a young child [inaudible 00:24:20] was part in special ed. I was in a special classroom until I was mainstreamed into a regular classroom. And I feel like as a young child with my particular disability… I have rheumatoid arthritis so a juvenile form. I spent a lot of time in hospitals, a lot of time, doing things like physical therapy and I’ve had many, many surgeries as a kid. So I think that really shaped my understanding of what disability really means. But I think coming from a big family that was really supportive of who I am and really went a long way. I mean, I felt like my mother and grandmother were really strong women and they had to take care of a lot of kids. They have a lot of responsibilities and were really, really hard workers.

    My parents owned restaurants when I was growing up. My father was a chef. And if you’ve ever worked in the restaurant business there, you have to be extremely hard workers. And so I really feel like part of my work ethic came from my family and my parents in particular. And also my parents really supported me in going after whatever I wanted and what I believed in. And so that was something that I grew up with. And my dad was in a union. My mom was a domestic worker, so I really… And those are issues that are really important to me. So, I feel like that really had an influence on my love and desire for social justice.

Ashley Inkumsah:    Mm-hmm (affirmative). That is wonderful that you had such an amazing support system. That’s amazing. And based on your own experiences, what advice would you offer to other people with disabilities who come from multiply marginalized backgrounds? What would you say to them?

Nikki Brown-Booker:    I would say to them don’t let people push you around. Don’t choose who you are in any particular day or time. Be who you are, be proud of who you are, and really stand up to that type of marginalization. And everybody has different skills, different challenges, different things that they’re good at. Find what you’re good at. Find the thing that you love and figure out how your disability or your ethnicity really enhances those things and use those things in your life as opposed to trying to fight against them.

Ashley Inkumsah:    Mm-hmm (affirmative). That’s exactly what you’re doing. And it’s amazing. It really is marvelous for sure. Where can our audience keep up with the Disability Inclusion Fund work that you’re doing at Borealis? Where can they find more information?

Nikki Brown-Booker:    I think you can find information on the Borealis website and sign up to be on the mailing list for the Disability Inclusion Fund, which you can do on the website also. We’re doing lots of exciting things. We have our Request For Proposal out right now. We’ll be doing more grant-making next year. And I think one thing that I’m really excited about for us in the future, is we’re going to be doing a lot of capacity building for, not only for our grantees, but also just like thinking about things that the community needs and providing some more capacity building around those types of topics.

Ashley Inkumsah:    That is fantastic. Well, it was so wonderful speaking with you. Is there anything that I haven’t asked you that you would want to tell to our audience?

Nikki Brown-Booker:    I don’t know. I can’t think of anything. I mean, I guess my last thing I would say is one of the things for me that’s been really important that I’ve learned as a person with a disability and a person of color is that people are always going to try and knock you down or not even knock you down, but just make you feel like you’re less than. And just remember that you’re not. That you have as every right to be part of the world and society as anyone else and you make your presence known.

Ashley Inkumsah:    That is absolutely awesome advice. Well, thank you once again for joining me. I had so much fun having this conversation with you today.

Nikki Brown-Booker:    Thank you!

Ashley Inkumsah:    It was so great to have this conversation about racism and ableism with someone who exists within several multiply marginalized identities. Her self-assuredness, and willingness to proudly claim all of her identities and tear down the systems of racism and ableism is the absolute embodiment of disability justice. Now, as always, you can find ASL interpretations and transcripts for this episode and all of our past episodes at http://www.wid.org/whats-up-WID. And if you enjoyed today’s episode, don’t forget to share it. Now, thank you so, so much for listening to, watching or reading today’s episode. And in our famous last words here on What’s Up WID, to paraphrase one of our founders Ed Roberts, we need to get out there and change the old attitudes so we can build for better. Thank you so much. And I’ll talk to you next time.

Graphic with torso level photo of three Black and disabled people: a non-binary person holding a cane, a non-binary person in a power wheelchair, and a woman on a folding chair raising their fists against a purple background.

Moving From Disability Rights to Disability Justice

By Hailey Hudson 

The Disability Rights Movement established civil rights for people with disabilities, opening up opportunities for them to participate more fully in society. 

This movement gathered speed in the 1960’s and led to the Americans with Disabilities Act (ADA) being passed in 1990. The United Kingdom would pass a similar legislation: the Disability Discrimination Act (DDA) in 1995. Many other countries across the globe followed suit with similar legislation throughout the 1990’s. 

But the Disability Rights Movement fell short of examining how aspects such as the intersections of race, gender, class and sexuality play a role in the oppression of people with disabilities. That’s where Disability Justice comes into play.

What is Disability Justice?

Disability Justice is a term that was coined in 2005 by a collective of disabled queer women of color, including Patty Berne, Mia Mingus, and the late Stacey Milbern. Disability Justice builds on the disability rights movement, taking a more comprehensive approach to help secure rights for disabled people by recognizing the intersectionality of disabled people who belong to additional marginalized communities. 

The Disability Justice framework asserts that we must include the experiences of multiply marginalized people with disabilities such as: 

  • People of color 
  • Immigrants 
  • LGBTQIA+ People
  • Homeless people
  • Incarcerated people
  • People who have had their ancestral lands stolen 

Disability Justice looks at all of these issues, recognizing how diverse systems of oppression interact and reinforce each other. Because of this broader focus, the Disability Justice movement is the most comprehensive way to create lasting change for people with disabilities and who are multiply marginalized.. 

Disability Justice has 10 main principles to examine the inclusion of people who are multiply marginalized:

1. Intersectionality

Intersectionality is a term founded by legal scholar Kimberlé Crenshaw in 1989 to address how Black women exist at the intersections of racism and sexism. Similarly, the Disability Justice framework applies this concept by explaining that disabled people each have a different background and experience regarding race, class, sexuality, age, immigration status, and other issues. Recognizing intersectionality means recognizing that abhorrent ideologies such as ableism, racism, sexism, xenophobia, homophobia, and transphobia often operate together and empower one another. 

2. Leadership of Those Most Impacted

Disability Justice makes a point to center the leadership of the people most impacted by ableism rather than scholars and academics, or others who are disabled but still benefit from other types of oppression. The Disability Rights Movement has been criticized for prioritizing the voices of white disabled people, who have often continued to reinforce the racism and oppression that Black disabled people and people of color experience. Therefore, it is imperative to ensure that leadership, power, and opportunities are given to people most negatively impacted by the full spectrum of ableism to more effectively combat those issues.

3. Anti-Capitalist Politics

This principle essentially says that our worth as a person does not depend on how much we can produce. Disability Justice pushes back against the level of productivity a capitalist culture expects, as well as the systemic poverty that people with disabilities are forced into if they are unable to work. All people deserve to have their needs met, regardless of their ability to produce.

4. Cross-Movement Solidarity

Disability Justice combines with other movements seeking liberation — such as racial justice, environmental justice, anti-police terror, and others. Because every demographic of people includes people with disabilities, people with disabilities will not be liberated without the success of each of these movements. This effort helps disabled people to become more united and comprehensive in our activism.

5. Recognizing Wholeness

The Disability Justice movement holds that disabled people are whole people. They are not less than because of their disability. Disabled people have rich inner lives and valuable experiences.

6. Sustainability

Another vital principle of the Disability Justice movement is sustainability. Disabled activists and advocates need to be in tune with their bodies to pace themselves long-term and continue steadily working toward justice over time without burning out. Additionally, the sustainability of the movement is dependent on the community, and cannot be pushed forward by individuals alone.

7. Commitment to Cross-Disability Solidarity

Disability Justice focuses on all disabled people, including those who are often left out.  Anyone who experiences ableism is included, whether they are chronically ill, neurodiverse, Deaf, Blind, mentally, intellectually, developmentally disabled, physically disabled, or have any other disability.

8. Interdependence

Interdependence allows us to work side-by-side, creating a stronger community as we work to liberate all oppressed individuals. Instead of solely promoting independence, which was a focus of the Disability Rights and Independent Living movement, interdependence acknowledges that none of us can thrive without support. This principle centers around building a sense of community among disabled people and organizing to achieve liberation.

9. Collective Access

The collective access principle explains that Disability Justice creates methods of doing things outside of nondisabled, neurotypical norms. In the Disability Justice movement, access needs are welcomed, respected, and acknowledged.

10. Collective Liberation

Collective liberation explains that disabled people move together as people with “mixed abilities, multiracial, multi-gendered, mixed class, across the sexual spectrum, with a vision that leaves no one behind.” This principle acknowledges the decades-long work of those who have previously fought for liberation while also acknowledging what is yet-to-be. Collective liberation means envisioning a world that can be created when disabled people with various backgrounds and lived experiences come together to enact a movement of change. 

Moving Forward with Disability Justice

When we focus on the principles of Disability Justice, we prioritize the connections between ableism and other systems of oppression. Disability Justice recognizes that disability is not monolithic — ableism looks different for people with various disabilities as well as people of different races, classes, and genders. Thus, Disability Justice is the most potent and effective way to secure the liberation of disabled and multiply marginalized people.

Hailey Hudson is a Freelance Writer for WID

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Sign language interpretations: Deaf-Led Disaster Action, September 24, 2021

Event descriptions in Hồ Chí Minh Sign Language, Japanese Sign Language, American Sign Language, and International Sign. For more information about this event, please visit the Deaf-Led Disaster Action event page.

Hồ Chí Minh Sign Language (with captions)

Japanese Sign Language (with captions)

American Sign Language

International Sign


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GADRA + Gallaudet Present: Deaf-Led Disaster Resilience

The Global Alliance for Disaster Resource Acceleration (GADRA) and Gallaudet University invite you to an upcoming three-part event series: Deaf-Led Disaster Resilience.

Disability-inclusive Disaster Risk Reduction is a growing field of practice, yet deaf, deafblind, hard of hearing, and deaf-disabled people have been widely marginalized from everyday disaster communication, as well as disaster management training and leadership roles. GADRA and Gallaudet University are partnering on an event series to draw attention to, and open a set of conversations about, deaf people and disasters. The series includes a webinar on disaster action by deaf-led organizations, an expert panel on deaf leadership in international disaster policy, and interviews with deaf youth leaders about disaster action. Data, ideas, and experiences shared during the three events will be used to inform future initiatives and response efforts.

Event announcement graphic with text, all repeated in page text

Kicking off on September 24, the Deaf-Led Disaster Action webinar will spotlight Deaf-led organizations in Japan, Trinidad & Tobago, and Viet Nam to raise awareness about disaster impacts in those countries and the strategies used to advance disaster action.

On October 29, GADRA and Gallaudet will hold a panel: Deaf Leadership in International Disaster Policy, centering on ways that policy can be improved to advance Deaf leadership in disaster management, including the infrastructures and funding mechanisms needed to support implementation.

The series will culminate in a podcast premiering in November: Deaf Youth Disaster Experiences & Action, where Deaf youth from Gallaudet University will share their experiences. 

Japanese Sign Language, Trinidad & Tobago Sign Language, Hồ Chí Minh SL, and International Sign will be provided.

Stay tuned for more information and a link to register for each event!

Learn more about each event

Follow the links to learn more and register for each of the Deaf-Led Disaster Resilience events:

Deaf-Led Disaster Action webinar, September 24, 2021

Deaf Leadership in International Disaster Policy webinar, October 29, 2021

Deaf Youth Disaster Experiences & Action podcast, November 2021 [Link coming soon]

About GADRA

GADRA is a collaboration between disability-led organizations, foundations, corporations, and other allies to identify local disability-led organizations and their disaster-impacted communities, then link partners to accelerate assistance and resources, both during and after disasters.

Link to GADRA main page


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Deaf-Led Disaster Action: September 24, 2021

Deaf-led organizations play a vital role in disaster and humanitarian contexts, but are often overlooked in disaster research, training, management, and reporting. 


This webinar spotlights Deaf-led organizations in Japan, Trinidad & Tobago, and Viet Nam to raise awareness about disaster impacts in those countries and the strategies used to advance disaster action. These actions begin with Deaf communities and also provide information and resources that benefit the wider society.

Event Recording

A full recording of the webinar including open captions in English and a transcript are now available!

Link to event transcript for Deaf-Led Disaster Action

Event Details

Friday, September 24, 2021

1 PM UTC/ 9 AM EDT/ 8 PM ITC/10 PM JST

Japanese Sign Language, American Sign Language, Hồ Chí Minh Sign Language, International Sign, and English with live-captioning (CART) will be provided.

Register: Link to register for the Deaf-Led Disaster Action Event

Event announcement graphic with 4 Deaf presenters collaged into one image. All text repeated in body text.

Details in Hồ Chí Minh Sign Language (with captions)

Instructions for registration in Hồ Chí Minh Sign Language:

Details in Japanese Sign Language (with captions)

Details in American Sign Language (with captions)

Details in International Sign

Featured presenters:

Event details and presenter biographies in Japanese

Event details and presenter biographies in Vietnamese

Naoki Kurano, Executive Director and General Manager of Head Office, Japanese Federation of the Deaf; General Secretary, Central Headquarters for Disaster Relief for Deaf People

Naoki Kurano, a Japanese man wearing a dark blue suit and red striped tie, stands infront of a white wall and is looking at the camera.

Naoki Kurano became Deaf at the age of six months after having diphtheria. Kurano serves as the General Secretary of The Central Headquarters for Disaster Relief for Deaf People (CHDRDP) and Executive Director and General Manager of the Head Office of the Japanese Federation of the Deaf (JFD).

CHDRDP was established for sustained support to the victims of the Great East Japan Earthquake, as well as for the response to other regional natural disasters, and promotion of disaster reduction. CHDRDP was founded upon the predecessor organization, Central Headquarters for Disaster Relief for Deaf People in the Great East Japan Earthquake (CHDRDP-GEJE) and co-organized by three deaf-related organizations: JFD, National Research Association for Sign Language Interpretation (Zentsuken), and Japanese Association of Sign Language Interpreters (JASLI). CHDRDP-GEJE was launched by JFD in 2011, in response to the mega earthquake in eastern Japan, and operated support activities.

Bryan Rodrigues, President, Deaf Empowerment Advocacy Foundation (DEAF)

Bryan Rodrigues, a Trinbagonian man with light skin and curly black hair, wearing a navy suit.

Bryan Rodrigues was the first Deaf President of the Trinidad and Tobago Association of the Hearing Impaired, a founding member and former President of the Deaf Empowerment and Advancement Foundation of Trinidad and Tobago (DEAF) and the Deaf Basketball Association. He has been involved in six local organisations for the Deaf. 

Rodrigues attended Deaf primary and mainstream secondary schools in Trinidad. He then attended college for two years in New York. He is passionate about improving interpreting services and access to better education for the Deaf.  

On his return, he studied computer repairs, A+ Certification and later on digital film-making. He has expertise in videography and digital video editing. As a facilitator for the Caribbean Telecommunications Union, he has presented on ICT4PWDs with a focus on the Deaf, in five Caribbean islands. He was the first Deaf Trinbagonian to teach Deaf Language and Culture at UWI, St. Augustine Campus. 

Rodrigues was awarded the Community Hero Award by the Ministry of Community Development in 2013. He was one of two Deaf representatives who attended the 2nd World Federation of the Deaf’s Conference in Sydney, Australia in 2013. He comes from a fully Deaf family, has been married for the past 13 years and is the father of three boys.

Ian Dhanoolal, Vice President of Deaf Empowerment and Advancement Foundation (DEAF) and Sign Language Instructor at University of the West Indies, St Augustine campus in Trinidad, West Indies

Ian Dhanoolal was born Deaf in 1974. After attending Cascade School for the Deaf and South East Port of Spain Secondary School, he spent a year at the Atlanta Area School for the Deaf in the US, before returning home to Trinidad and Tobago.

He is a researcher, educator, activist, interpreter, translator, and small business person. He has carried out groundbreaking research on Caribbean sign languages and Deaf communities, including projects in Trinidad and Tobago, Grenada, St Vincent, Guyana, the Cayman Islands, Honduras, and Colombia.

He has taught Trinidad and Tobago Sign Language and American Sign Language for over 15 years, and has worked as a tutor at the University of the West Indies, St Augustine Campus since 2015, where he teaches sign language and Deaf culture. He was the first Deaf Interpreter to work live on National Television, and continues to interpret the National Budget and Budget Debate, as well as contributing to the interpreting to the national news on TV6.

He was one of the founders, and current acting president of the Deaf Empowerment and Advancement Foundation, and one of the first Deaf board members of the Trinidad and Tobago Association for the Hearing Impaired.

In 2019, he won the LCCF Edward Miner Gallaudet Award, presented to a Deaf or hearing leader from any place in the world who is working to promote the well-being of Deaf people worldwide. Ian was the first Caribbean winner of this award. He also presented his work on Caribbean sign language documentation and language rights to the World Federation of the Deaf’s International Congress in June 2019.

Nguyen Tran Thuy Tien, Director of Psycho-Education and Applied Research Center for the Deaf (PARD)

Vietnamese woman with short black hair and dark eyeglasses, wearing light blue sweater and dark-shirt collar. She is signing 'three", standing in front of a PowerPoint projection to her right and a green-board to her left. Green-board contains a list of names written in Vietnamese.

In 2013, Tien became the first Vietnamese Deaf person awarded the World Deaf Leaders Scholarship to pursue her Master in Sign Language Education at Gallaudet University. After her graduation in 2016, Tien returned to her home country and worked on the development of the deaf community.

In 2019, she founded the first and only Deaf-led NGO in Vietnam named Psycho-Education and Applied Research Center for the Deaf (PARD). PARD is working for an inclusive and barrier-free society for the Deaf community where Deaf people have full access to sign language and equal participation in other social activities. PARD focuses on empowering and building capacity for Deaf people, promoting advocacy, and raising awareness about the Deaf community. The spirit that Tien and everyone at PARD always follows is “Nothing About Deaf Without Deaf”.

About GADRA

GADRA is a collaboration between disability-led organizations, foundations, corporations, and other allies to identify local disability-led organizations and their disaster-impacted communities, then link partners to accelerate assistance and resources, both during and after disasters.

Link to GADRA main page

Link to the Deaf-Led Disaster Resilience event series page


If you are having technical issues or accessibility issues on this site, email wid@wid.org.

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