GADRA: Experiences of Black Disabled People During & After Disasters Transcript

>> DUSTIN SNOWADSKY:  Hello, welcome to the town hall with the Global Alliance for Disaster Resource Acceleration.  My name is Dustin and we would first like to announce that we are recording this webinar, it is also currently being live streamed on WID’s Facebook page which is Institute on Disability and we’ll put the link in the Zoom chat.  For starters, everyone has been muted.  You can activate captions on your toolbar located at the bottom of the Zoom window, or you can use the URL we just posted on the chat box.  Lastly, we do hope that you will share and tweet about this WID town hall and the very important issues that you will all raise today.  We would love it if you used #DisabilityDisasterAlliance on various social media platforms.  I think that’s all the housekeeping, so let’s get started.  I’ll turn over to Marcie Roth, who will kick us off.  Marcie?

>> MARCIE ROTH:  Hello, everybody.  Welcome to another gathering of the Global Alliance for Disaster Resource Acceleration.  Over the past seven months, since we launched GADRA, we’ve brought together disability led organizations, humanitarian led funders and allies from 69 countries with a shared commitment to support the leadership of and resources for local disability led organizations and their disaster impacted community before, during and after disasters.  GADRA is committed to disrupting the exclusion of disability led organizations from humanitarian relief and accelerating resources they need to support their community when it’s needed most.

Today we are proud to pass the mic to some of our colleagues who are leading the global effort to center the experiences of black disabled people during and after disasters.  Our moderator for this important discussion is GADRA founder circle member Andraéa Lavant.  Andraéa and I have been partnering on operationalizing inclusion for many years and I’ve always admired her leadership.  Andraéa is the founder and President of Lavant Consulting, LCI, a social impact communications firm that offers cutting edge corporate development and content marketing for brands and nonprofits.  LCI’s specialty is helping brands speak disability with confidence.  As a communications consultant and inclusion specialist, Andraéa has over a decade of experience working with programs that support youth in adults with disabilities and other underserved populations.  She currently serves as the impact producer for NetFlix’s Oscar short listed feature film documentary crip camp where she is charged with leading the campaign’s effort to promote understanding of disability as a social justice issue and build across lines of difference.  Before we turn to Andraéa, I’m pleased to welcome our guest speaker, another long time partner who I’ve had the opportunity to collaborate with on key disability and disaster policy initiatives for many years.  Curtis Brown has Homeland Security and emergency management experience at the federal, state and local levels.  He currently serves appears the state coordinator, director, of emergency management at the Virginia Department of Emergency Management.  In 2018, he co founded the Institute for diversity and inclusion in emergency management, IDIEM, a nonprofit organization dedicated to diversify the field of emergency management and promote the application of equitable practices to improve disaster outcomes and build community resilience for the most vulnerable communities.  Curtis is recognized as a certified Emergency Manager, he serves on the equitable climate resilience advisory panel for the Institute for building technology and safety and FEMA’s mitigation framework leadership group.  I’m excited to welcome Curtis and the Institute for Diversity and Inclusion in Emergency Management in GADRA’s newest circle member.  Welcome, Curtis.  Newest circle member.  Welcome, Curtis.

>> CURTIS BROWN:  Thank you, Marcie, for that wonderful introduction and for all your friendship and your leadership over many years advocating foreign clue sieve emergency management addressing the needs of people with disabilities and operationalizing equity and inclusion.  As Marcie said, my name is Curtis Brown.  I serve as director of emergency management here in Virginia, Department of Emergency Management and co founder of the Institute for Diversity and Inclusion in Emergency Management, and it’s really my pleasure to make some opening comments for the Global Alliance for Disability Resource Acceleration today and particularly for this discussion of black disabled people before and during disasters, this is a wonderful opportunity for a truly global and inclusion discussion, focused on the correlation of race and disability status and disasters and systemic biases and negative impacts on black disabled people before, during and after disasters.  For instance, data related to the global COVID 19 pandemic has confirmed disproportional practices, death rates, hospitalizations, this is why discussions like we’re having today are critically important.  

Panelists today are focused on having a conversation about preparing for, responding to and recovering through disasters through the experiences of those who best understand these issues.  Black and disabled people are the subject matter experts who should be empowered and included in insights to ensure that disaster response agencies make drastic and systemic and sustainable changes to improve the outcomes of black disabled people during disasters.  It makes us all better as a society when we have inclusive emergency management practices and make sure that our planning and our response and recovery addresses the needs of everyone.

Myself and other emergency management leaders greatly benefit from these discussions, since they remove the need for assumptions and helps to directly identify gaps and issues.  This conversation today demonstrates the power of diversity and inclusion and in prioritizing the needs of those disproportionately impacted.

Today we highlight one element of this important discussion about diversity, equity and inclusion looking at the needs of black disabled people and their experiences in disasters.  There are other data points that demonstrate the urgency of this moment and topic.  Persons with disabilities are more likely to be left behind or abandoned during evacuations and disasters, and in many cases due to inaccessible facilities and services and transportation systems.  Several studies show us that including the needs and the voices of persons with disabilities at all stages of disaster management process enhances our ability to really be inclusive and meet the needs of everyone.  All these data points demonstrate the intersection of race, color, ethnicity and individuals with disabilities and disasters.  As we continue on move forward with the COVID 19 response, I hope we can learn the lessons that are needed to be learned to address these clear gaps.  We famous the potential for more frequent and impactful natural disasters as well.  That’s why it’s urgently needed for us to hear these voices and to take actions now.  Our emergency planning efforts should be inclusive, address the needs of people of color, build resilience in preparation for future emergencies.  Prioritizing marginalized people and integrating equity into all aspects of disasters can occur if we make diversity and inclusion a Foundational goal and responsibility of emergency management, prioritize at risk populations in all planning and funding programs and all aspects of emergency management and integrate and empower and leverage those who experience inequities on a daily basis.  

In closing, I appreciate the opportunity to participate in today’s session and thank all the panelists for all the great work that they do and the moderators as well, for all the viewers who are participating in the discussion today and listening, who would take the information and turn it into actionable changes to make impact all over the globe, I really thank you for all that you do as well.  So with that, I’ll pass it back over to the moderator and again thank you for the opportunity to make some comments today. 

>> ANDRAÉA LAVANT:  Thank you so much, Curtis, thanks for being here.  This is Andraéa Lavant, and I am going on provide an image description before we move forward.  So I am sitting in my living room with a teal couch behind me and a variety of kind of spring like decorations.  I am wearing a kind of marigold colored shirt.  You can’t see it what it says in the color but it says advocate like truth, innovate like walker, lead like Douglas, I have a gold chain around my neck.

I’m wearing some African orange earrings that I got from Ghana.  I’m wearing my Kat eye black glasses.  Curly shoulder length hair.  And my skin is a deep caramel Brown.  So thanks so much.  Super excited to begin this conversation today, thanks to everyone within GADRA for having me and Marcie in particular.  So let’s get started.  I’m going to begin with providing an introduction of each of the panelists that we have with us today, and then we will jump right into questions.  The first person that we have is Anita Cameron.  Anita is the director of Minority Outreach for Not Dead Yet.  As a black disabled lesbian, Anita has dealt with racism, sexism, ableism and homophobia.  Sometimes combinations of these.  She has used her experience of discrimination and her unique intersectional perspective to promote understanding among different groups of disenfranchised meme and increase social justice among those fighting for social justice.

Then we have Dikko Yusuf, who is a high school literature teacher in Nigeria and project coordinator at the special needs initiative for growth.  Located in northern Nigeria.  Special Needs Initiative for Growth.  Yusuf became more involved with advocacy in 2019, during his year of national service.  When he joined a community development service group for Sustainable Development Goals.  Then we have Leroy Moore, who is the founder of Kip Hop Nation and has been a key member of had Moore magazine since the 1990s, Moore’s work with the magazine began with his column, Illin and Chillin, he went on to become a founding magazine of Pore magazine’s decolonize academy, Moore is also one of the founding members of National Black Disability, and activist whose work centers around police brutality against people with disabilities.

Next we have Vivienne Isebor, who has run awareness sessions and advocated on platforms such as BBC, mental health today and mind since being diagnosed with ADHD in her early 20s.  Isebor is a training clinical associate in psychology currently studying part time at UCL and working with individuals with complex emotion needs at East London, is also a founder of ADHD Babes, the first support group for black women and black nonbinary people with ADHD, where she is the director of community outreach and well being.  Finally we have Kaman Wasup, who is the treasurer at PNG Assembly of Disabled Persons and chairman of PNG Blind Union in Papua New Guinea.  Kaman has facilitated systemic advocacy trainings on disability inclusion since 2018.  During Kaman’s trainings, people with disabilities gather to partake in formal and informal advocacy activities.  Kaman also runs focus group discussions regarding topics such as utilizing mainstream media for advocacy.  So we have a pretty powerful panel today and would like to get started.

So I am going to ask a question and then for the sake of access, if each of you panelists could turn on your cameras when you’re speaking and then turn them off, that would be    after you’re finished, that would be wonderful.  So the first question I have is actually for all of you, and that is just if you can tell us a little more about yourselves and how COVID 19 and disasters impact you and your communities.  And we can begin with Kaman, that would be great. 

>> KAMAN KELLY WASUP:  Sorry.  I’m with my audio and my video, I guess.  Hello, everyone.  I am in a country of Papua New Guinea, which is north of Australia, within the Pacific region.  So basically, my country is pretty much a small country.  With 8 million population.  It’s a developing country.  So when COVID 19 started, I am also doing a lot of volunteer work, which I don’t get paid, so I pretty much do a lot of stuff to sustain myself.  So when COVID 19 struck, in Papua New Guinea, basically we have the news about coronavirus strike the Chinese and then how the government was not really serious about this until it increased, and then the government decided to impose shutdowns for three months.  And during the time, most of our disabled persons, including myself, would depend entirely on the informal sector to sustain ourselves, so it was really a struggling moment for us, and because my country is a developing country, we depend on each other.  And our family bond is very strong, the family within the household gets to support each other to sustain ourselves. 

So when the government imposed shutdown period for three months, it did not take into consideration how we will survive throughout the period of the shutdown, so it was really a struggling moment for myself as a person with disability.  So I really had to find other options to sustain myself, so I was depending entirely on my family to find a way for me to sustain myself.  So it was a struggling moment for myself because I depend entirely on informal shutdown, also doing a lot of volunteer work presenting back to my family, so it was a struggling moment for me during the time that the government imposed three months shutdown, when there was the first case registered in Papua New Guinea.  So that’s my experience when COVID 19 strike.  Thank you. 

>> ANDRAÉA LAVANT:  Thank you so much.  Anita, can you tell us more about yourself and how COVID 19 and disasters impact you and your communities?

>> ANITA CAMERON:  Hello, my name is Anita Cameron.  I’m the director of Minority Outreach for Not Dead Yet.  A quick image description, caramel colored skin, black woman with long locks, I’m wearing a pink shirt that says Not Dead Yet, which is my organization.  One thing I don’t think it was made clear about me in this is that I have disaster and emergency planning experience on what’s known as a CERT, which is Community Emergency Response Team, started that out in Washington, D.C. and helped to organize the first CERT class for people with disabilities here in Rochester, New York, I then went to Denver and joined their CERT and then became a CERT instructor.  The first legally blind instructor for the state of Colorado and then became a program manager and amateur radio operator, and I’ve had some experiences in real life disasters and real life actual exercises.  Both national, state and local.

When COVID hit, I immediately began to notice the impact on the black community and disability community, and as I saw the impact and saw that often we were not served, we were dying at faster and higher rates and things, I then began to write about that subject in the context of my job, as I say again, I’m director of Minority Outreach for Not Dead Yet.  Not Dead Yet is a disability organization that is opposed to and fights against disability discrimination in medicine, medical rationing, healthcare rationing, euthanasia and doctor assisted suicide.  So I saw where in that context, especially as proponents of assisted suicide began making the movements of COVID 19 as terminal illness and for people to apply for assisted suicide using COVID as that response, and I saw that as really dangerous.  I saw the medical rationing that was going on, was really, really scared for my community.  We all have heard the story of Michael Hickson, a gentleman from Texas who happened to be black and disabled and how he was denied COVID 19 treatment specifically because he was disabled, placed into hospice and allowed to die.  And that was chilling.  That frightened me.

So I’ve been keeping close tabs on, you know, as we’re living through COVID and seeing its impact on black community, Native American, indigenous community, Latino community and particularly the disability community, it’s scary, and I’m still watching.  And people with disabilities, we are fighting still for basic resources and fighting to be included, you know, in governmental things, in funding, you know, and all of that.  So I am definitely keeping aware.  As I said, I’ve done some writing for this, for not dead yet, and just on my own.  It’s frightening, but I am grateful for those of us disability activists out here really pushing for and fighting for us to be included, you know, in things like the vaccination lineups and things of that nature.  So I think I’ll stop right here.  Thank you very much.

>> ANDRAÉA LAVANT:  Thank you so much, Anita.  Dikko, can you share a little?

>> DIKKO YUSUF:  Yes.  Thank you.  My name is Dikko Yusuf, and I am from Nigeria, northern Nigeria, I’m a teacher, as you said, and I understand I have an accent, but it kind of depends because I normally don’t read, I use audiobooks to read.  So it affects the way I speak.  And also the reason request I do use audiobooks is because I am visually impaired as well.  So I have very low vision.

For the impact of the COVID 19, because I was teaching at a school, in March last year, the government shut down everything, really.  No movement at all when it became very apparent that the COVID 19 had landed in Nigeria, so they wanted to kind of limit the damage that the virus carried in the country.  One thing that did strike almost immediately and I hear of Anita of having an instant impact, kind of felt that as well, because I was teaching at a school and then schools were shut down.  And it’s the private schools, the private owners of schools cannot keep paying salaries.  And something also that Cameron said.  So suddenly the income that you’re    something also that Kaman said.  So suddenly the income you’re having, it just stopped.  So I use to are reduce intraocular drops, to reduce the intraocular pressure so my vision is clearer.  I use it once in the morning and once in the evening and when I went to get the eye drop I was shocked that the price had actually tripled.  Not doubled, it tripled, almost overnight, and part of the reason is because drugs in general, especially drugs skyrocketed, their prices just   increased astronomically, so a drug would be almost three times the price, that really struck a blow, struck a chord, sorry, and it kept going on with other things as well.  So, you know, every day, I would find at the market things that weren’t even important, this was the thing, that drugs were    the things that weren’t even imported.  This was the thing, drugs that were imported from other countries, so interruption in the supply chain, so things were not coming in as readily and not available as readily as you would have them.  So it became quite apparent that it was going to be really a rough road ahead.  And it was for seven months, we didn’t receive any salary because schools were not open even when other sectors we opened, because things were quite difficult, they had to make sure everything was there.

So only when school was reopened around September or October, and then it was closed again, unfortunately for us, but only recently we opened.  However, I think so far, really, we have in terms of sustaining oneself, and I hear Kaman speaking from Papua New Guinea, and I can relate a lot to what he was saying.  You have to rely on your other family members, at a certain point I just had to because there was no stream of income coming in.  Yeah.  So really, it’s more about resources that were not coming in to sustain myself, my needs.  But, you know, I have family luckily around and a community as a community the way we live, the people around you also depend.  So we saw a lot of that really in Nigeria.  It brought people closer together, but also there was the kind of, you know, having to cope with a very difficult situation that most people went through.  So I think that’s mostly it for my experience so far in the COVID 19 pandemic.

>> ANDRAÉA LAVANT:  Thank you for sharing, Dikko.  And next, we’ll have Vivienne, if you can share a little bit about yourself and how COVID 19 and disasters impact your communities.

>> VIVIENNE ISEBOR:  Hi, everyone.  Thank you.  So I guess for me personally, I lost a lot of my routine, which included being able to be outside, like outdoor activities.  I used to attend a lot of kind of galleries and events.  You know, loads of social events that would help break up my days and also was a bit of escapism, having ADHD, my thoughts are kind of constantly racing, so having moments of time where there was a break was really useful for me.  So losing out on that I think was really difficult.  As well as that I was finishing UNI at the start of the peck, so everything moved online.  So kind of studying, being able to concentrate on lectures, that was extremely difficult.  So I tried to go back to my ADHD clinic but wasn’t able to because the line was    the waiting list was too long and that was back in summer, so the lack of access to services is a really big difficulties, as well as remembering dates, I think the lack of kind of change in the daily, you know, not being able to go outside and have different things to break things up has meant the days are blurring into one, it’s made it difficult to organize, the difficulty that some people refer to as time blindness has gotten worse because there’s no breaks.  Everything just feels very flat.  

And in terms of our community, a lot of people from the black community with ADHD have spoken about not being able to access services.  ADHD services in the UK are already stretched.  They don’t have enough resources.  And now during the pandemic, a lot of people’s difficulties have    you can see a lot more, it’s been maximized because we’ve lost out on our routine, we’ve lost out on our support networks and the things that would help us manage.  So people are experiencing a lot more and seeking help from a system that already doesn’t have a lot of resources in the first place.  And then things like feeling isolated or not actually having your community around you has meant loads of people have been seeking that community online, so our group has grown a lot in the last six months because people are seeking that space to kind of be around people, to relate to people, to just not feel isolated.  Yeah, and I think the lack of services was already bad, but during this kind of disaster and this COVID 19 period, it’s gotten a lot worse.  Yeah.

>> ANDRAÉA LAVANT:  Thank you for sharing.  And next we have Leroy.

>> LEROY MOORE:  Hello.  Leroy Moore here.  I’m sitting in my living room with a purple shirt on, and I would like to take it from an international stage because I and we, so there’s no story without we, and people with disabilities make up the largest minority group in the world.  And in disasters, it’s the same story.  We’ve been here before.  It’s just bigger.  You know, Hurricane Katrina, the earthquake in Puerto Rico, we can look at what’s happening in Haiti, same story.  It’s the stories that people with disabilities are left out and are killed in hospitals, by police, and we were the last ones to get any kind of services or any kind of vaccines if we need it.  And that’s because of our institutions and our laws don’t go far enough.  Our laws are not implemented, so it’s a piece of paper.  And our services are not dedicated to us.  Anytime we gain budgets, our services are cut.  So it makes sense that in emergency situations, it happened overnight again, that we are killed by police and that we are the last ones to be thought of.

It’s the same story.  It’s a bigger pandemic than anybody dealing with, you know.  In New Orleans, it was horrible, people cut and wealthy people didn’t see it.  We have a President who flew over it and looked out the window.  So it’s   

(Sound going out).

  So to drastically change how we do school.  So teaching, anybody who has a computer at home.  We can’t go back to what’s normal.  And we see that when schools in New York open up, they had to close two days after.  So it’s so frustrating that the system won’t change, you know.  And because it won’t change, we continue having the same situation.  You know, emergency happening two, three, years ago, people with disabilities again.  If you don’t learn and if you don’t do radical changes to the system and we get used to, you know, this situation awareness with we or I and I because, you know, this happens in countries with people with disabilities. 


>> ANDRAÉA LAVANT:  Thank you so much, Leroy.  This is Andraéa.  So I feel like, you know, each of you spoke about this a little bit with regard to COVID 19, but in general, if you can give us a broader perspective on the ways that you understand and know black disabled people to experience racism and ableism before, during and after    and after disasters.  So I’m going to direct that to, in this order, Anita, Leroy, and then Kaman.  So again, the question is in what ways do black people experience racism and ableism before, during and after disasters? 

>> ANITA CAMERON:  Hi, this is Anita.  Well, in the first place, we aren’t even thought of.  Okay?  We’re not even thought of before, during, you know, or after disasters.  We’re not thought of by local government, state government.  Our communities are not heard from.  Often when we try to advocate for our communities, we’re kind of pushed away, kind of dismissed.  As we know and particularly in the disability community, I mean, black folks, we do tend to be poorer.  When we’re disabled, we tend to be poorer, we also tend to have a lack of access to information and other resources.  You know, even compared to other groups of disabled folks.  So what ends up happening, as we see, you know, the disability community itself is rarely, if ever, thought of before, during and after disasters and that shows up in silliness like, you know, oh, have disabled have paratransit help them to evacuate.  Really?  Okay.  Oftentimes if we have to evacuate, because we’re poor and tend to be poor, we often can’t.  We often have no choice but to shelter in place in disasters, people with disabilities lose, we die unnecessarily.  So in so many other ways.  And after disasters, our communities, we’re the last to go through the    to be cleaned up, if you will, you know.  We’re the last to    think about it.  I mean, if you think about Hurricane Katrina and think about that, there’s still parts of New Orleans where the houses are still devastated and whatnot from Hurricane Katrina.  Okay?  We’re talking like 15, 16 years ago.  So that’s another way that we’re not even thought of where the racism and ableism happens, so we’re not listened to by these commissions, by the city government planning, all of that, they just don’t consult us.  You know, as far as disabled, I mean, I think a lot of folks think that we have to do stuff for disabled, so people don’t want to listen to us when we’re telling about our problems and the things that impact our communities, different people will kind of look at it as us kind of wanting handouts or sympathies and not giving advice on what we can do to help our communities and how to help us.  So that’s just one of the few ways that racism and ableism persists.

It seem as if, especially if we’re disabled, it’s almost as if you can’t think for yourself, so we’re going to have to think for you and do for you instead of listening to us tell you what we need and how to better help our communities.  There’s just so much more, but just that whole thing of we’re not valued as people and communities, so people don’t want to listen to us.  It’s sad, it’s something that I’ve been trying to work to change for as long as I’ve been volunteering in this field, which has been since 2005, we still have a lot of hearts and minds to change because as long as those in charge, if you will, think that we don’t have anything valuable to offer, you know, then that’s what it’s going to be.

Another thing is while we deserve to be rescued, you know, and all of that just right to rescue, we also deserve to be the ones helping our communities out.  Being on those commissions, being part, you know, of disaster planning and all of that, and often, especially if you’re disabled, people don’t want to listen to us.  I’ve served on some of those, and often it’s very, very difficult to get those in charge to listen and to follow up on our suggestions.  I’ll stop right there.  Thank you.

>> ANDRAÉA LAVANT:  Thank you so much.  Leroy, can you share with us, in what ways do black disabled people experience racism and ableism before, during and after disasters?

>> LEROY MOORE:  Well, you know, I mean, that’s a whole book.  But usually black   disabled people have no national voice.  I belong to national black    voices it’s the only of black disabled people.  NAACP or urban league has no include about disability, so if you don’t have an organization, a national organization that represents you, of course there’s going to be racism and ableism.  So can you imagine if black disabled people can come home and come home and start working, they can’t come home now because there’s no foundation, and because of that, things like this continues to happen    situations like this continue to happen.  Martin Luther King said I can’t follow you if you’re not going my way, you know.  I’m 53 years old.  I’ve been doing research in disabilities since the ’80s, and although it’s getting a little bit better, it’s still not at a level where we can force policy, we can force administration, we can force our community, you know, black community to not be ableists, you know, we can force our disabled community to face the racism.  But that’s not happening when a strong group of us get together as an organization and voice that to happen.  I mean, yeah, all of these, you know, now we have racial justice on the national agenda from our President and Vice President, but still, you know, nobody is talking about black disabled issues.  So my question is that I’m 53, are we always going to talk about it again in another 53 years and say there’s no organization?  You know, sometimes you have to make a sacrifice, and sometimes you just have to sacrifice, like work in my community to make sure that there’s a foundation for the next generation.  So, you know, that’s a question, are we going to make that sacrifice, or are we going to continue working at other places and saying that the black community does not recognize disability?  Of course they don’t because there’s no organization there.  There’s no education there.  We’ve got these nonprofit are organizations that really don’t speak to black disabled people.  So thank you. 

>> ANDRAÉA LAVANT:  Thank you so much, Leroy.  And last for this question, Kaman?  In what ways do black disabled people experience racism and ableism before, during, and after disasters? 

>> KAMAN KELLY WASUP:  I think for myself, specifically coming from a country which is dominated by black people, Papua New Guinea is located north of Australia, it’s a Pacific country, I see that during the time of the COVID 19 pandemic, because of the government of Papua New Guinea, a lot of international donor like the UN, and a lot of donations are coming in, but they forgot about all of us concerning persons with disabilities and also related persons with disabilities too, to have discussions with them to see how the preparedness and the response should be like.  And even the government of my country, also the government of my country, also decided to come up with, within one month, and just imagine, there was no consultation with persons with disabilities or representation of persons with disabilities, but because of a lot of money from international donors, which they wanted to tick their boxes, you know.  So for them in order to them for tick their boxes because of funding that would support the government response of COVID 19, but because of that, there was no inclusion, and of course racism and segregation within persons with disabilities participation in the decision making process in terms of the development of guidelines and processes, systems to comply with the new normal in light of the COVID 19 pandemic.  So I saw a lot of even also during the COVID 19 pandemic, the government came up with the new normal protocols, like, you know, washing your hands 30 minutes and also in terms of social distancing and this new protocol, it was mandatory for everyone to comply with, if you’re moving around in public and things like that, but it was not really including disability inclusion in the new protocols that the government has developed, so because of persons with disabilities were not consulted to participate so that their voice can be captured in terms of development of the policies and guidelines, systems.  So basically persons with disabilities are missing out.  One I’ve made mention of funding, the international dollars that came on board to support the government of Papua New Guinea, but they forgot the persons with disabilities and they went on to develop systems and processes just to tick their boxes and get funding to come through.  But persons with disabilities were missing out.  So for preparedness and response also, we were not being consulted and part of the decision making process.  So when we are not part of already created    so when we were not part of it, it created segregation and also created racism within the system and the processes.  So thank you. 

>> ANDRAÉA LAVANT:  Thank you so much.  I know we are running short on time, so I have a question that I want to direct towards Dikko and Vivienne, and then we will conclude.  So the question is, you know, we know that institutional racism is a global issue that differently affects local communities.  In what ways does institutional racism and ableism influence the disaster cycle?  We’ll start with Dikko. 

>> DIKKO YUSUF:  Okay.  So in terms of like institutional racism, as you’ve spoken, I suppose I’m speak as a Nigerian and as a country dominated by black people, so kind of the experiences of my personal experience as a person with a disability and also considering the fact that there is a lot of ableism within the society.  For me at least it goes back to the major idea of where we’re having    the access to employment and access and civic policy.  You look at the cabinet for Nigeria, people who make the decisions and who call the shots, you find that it’s not representative at all of persons with disabilities.  I think there’s only one person who has a disability in the whole Senate or something.  So I think it just goes back to that.  If you look at the institutions that represent Nigerians and Nigeria as a whole, it doesn’t really    it isn’t that reflective of the experiences of the people who can at least empathize with the position of persons with disabilities like myself and many other people in Nigeria who are living with disabilities so at least lack of representation, it’s very palpable here.

But I should say this, lastly, this needs to be April great deal of improvement in terms of inclusion and also policies that are directed at including the lives of persons with disabilities.  I have noticed this in Nigeria and hopefully something that will continue, and I think that these kinds of conversations we can guide the changes that we want to see.  So thank you very much.  I know we’re running short on time.  So I will cut my answer short.

>> ANDRAÉA LAVANT:  Thank you so much.  That was wonderful.  And finally, Vivienne?

>> VIVIENNE ISEBOR:  Thank you.  So I think there’s a lot of things that contribute to the kind of disaster cycle, especially for black meme within Britain.  So I’m from Britain, England and North London to be specific.  In this society    within this society, physical health, mental health, within education, even within politics, black people are discriminated against, black and Asian and other minority groups, but specifically black people, especially women’s health services have worse outcomes than their white counterparts, so I think that exists already as a difficulty.  And then when you look specifically at things like ADHD, ADHD being seen as an invisible condition means that people overlook it, people don’t necessarily understand what it means, especially within our community.  So often team grow up not knowing and then considering the fact that ADHD is underdiagnosed in a lot of groups.  I think the fact that women in our society, for example, black women aren’t believed when they express pain during childbirth.  I think that kind of rhetoric of not understanding pain and cultural competence means that our experiences aren’t necessarily believed by professionals, which I think adds on to the fact that a lot of black women are diagnosed alert on in life.  So a lot of the people in our group have been diagnosed up to their early 20s, people being diagnosed right up to their mid 40s.  And that’s kind of a combination of being a woman and being black.  I guess in terms of how it now becomes a cycle, incus not being    incus being underdiagnosed and not being given the support and treatment that we need means that we’re not getting the support that we need to improve our quality of life.  So that affects our employment prospects, that affects our mood and physical health and relationship and just our overall quality of life.  So if we’re already going through those things and then you put a huge pandemic on top of that, that is going to maximize the problem and we don’t have the resources and tools to manage that because we haven’t been    we don’t have access to these services.  We don’t have access to the support.  So I think it works in a cycle of we’re already disadvantaged and then yeah, the disaster put on top of that makes life harder and then trying to recover from that, again with the lack of access to services, the lack of understanding, the lack of cultural competence and knowing what ADHD looks like within the black community or within minority groups means that there’s a disconnect and we’re kind of forced to get through it as a community and to kind of lean on one another’s strengths, which is a great thing and we’re resilient and we’re surviving, but we need more than that.  It needs to be responded to with something that is concrete and something that’s delivered to us, for us.  Yeah, so I’ll try and keep it short like that.

>> ANDRAÉA LAVANT:  Such powerful commentary and truth.  Thank you all so much.  We are over time, and to Leroy’s point earlier, this could, oh, my goodness, we could go on forever and ever around this topic.  So thanks hopefully for what is the beginning of a conversation.  Thank you all for joining us.  Thank you to each of our panelists, Anita Cameron, Leroy Moore, Dikko Yusuf, Vivienne Isebor, and to Kaman Wasup and then we also want to thank Curtis Brown, who led us out from the beginning.  You can learn more about joining GADRA on the WID website,, and please be on the lookout for more information on the next GADRA event, which will be held on May 20.  Thank you all so much. 

>> ANITA CAMERON:  Thank you. 

Observing Disability Day of Mourning

Every year on March 1, our community comes together to remember people with disabilities who were killed by their parents or family members. According to the Autistic Self Advocacy Network (ASAN), in the past five years alone, 700 disabled people were killed by their parents, relatives or caregivers. It is horrifying and heartbreaking to know that those who are entrusted to care for their family members with disabilities are committing these inhumane acts of violence.

It is incumbent upon our community to come together to eradicate the systems of ableism that allow these murders to occur and seek justice for those who are killed by their parents, relatives and caregivers. 

ASAN’s Anti-Filicide Toolkit is a comprehensive resource to begin this crucial task. As we come together today to mourn those we have lost to filicide, we must remember to continue to fight for the lives of people with disabilities all year round. 

Marcie Roth, BBC News Interview, February 20, 2021

Host: President Joe Biden has declared a major disaster in Texas as the state struggles with fallout from a winter storm that has killed at least two dozen people and caused widespread blackouts and water shortages. Millions of residents of what is the U.S.’s biggest oil and gas producer have had to contend with days of electricity outages and nearly half of all Texans are still suffering from disruptions to their water services. There’s also been long queues for food handouts, with shelves empty in some supermarkets. The authorities have reported 10 deaths due to hypothermia.

Marcie Roth worked at the Federal Emergency Management Agency or FEMA for 8 years under President Obama. Currently she’s head of WID or World Institute on Disability, which is helping with the relief effort in Texas.

And Marcie there has been some improvement has there?

Marcie: There has been some improvement for some people but the people who are most disproportionately impacted in disasters are as usual experiencing a lack of assistance at this time.

Host: And what are you able to provide them?

Marcie: We as part of the Partnership for Inclusive Disaster Strategies, a national coalition, working together to support local communities in disasters, we’ve been responding to requests from the Houston mayor’s office looking for water. We’ve been attempting to connect local organizations with the resources that they need to meet the needs of people who at this very moment are not getting any assistance.

Host: As a veteran of disaster management, what went wrong, what has gone wrong in Texas?

Marcie: You know what’s gone wrong in Texas is a perpetual problem that we have seen for as long as I can remember and that is every time there’s a disaster, there’s an after-action report that identifies all the things that went wrong and then very little happens to address those.

What happened in Texas certainly has been compounded by the challenges that we’re all dealing with in navigating the pandemic, but 10 years ago a similar incident in Texas identified the very problems that Texas is experiencing right now.

These are the very same problems that could be occurring – well are occurring in a number of impacted states and could be occurring in any states right now.

As long we continue to admire these problems and not invest in improving infrastructure, and as long as we talk about equity but don’t actually invest in the kind of equitable approaches that serve the whole community, we’re going to continue to see this sort of failure again and again. And the consequences are deadly.

Host: And I think you’ve already touched upon low income groups are always disproportionately affected in these situations.

Marcie: Uh-uh, that’s right. People who experience poverty, people who are multiply marginalized, people of color who also have disabilities or have, you know, health disparities, these are the folks who time and again are not at the table at planning are then left behind in response.

Host: Marcie Roth, head of the World Institute on Disability, who worked at the Federal Emergency Management Agency for 8 years under President Obama.

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Meet the Panelists: Experiences of Black Disabled People During & After Disasters: A Global Conversation

Meet the Moderator, Guest Speaker and Panelists for GADRA’s Experiences of Black Disabled People During & After Disasters: A Global Conversation event, on Thursday, February 18, 2021.

This free webinar will be one hour long, and will begin at 12 PM EST/5 PM UTC. Captions in English and International Sign will be provided.

Link to register to attend Experiences of Black Disabled People During & After Disasters: A Global Conversation

Andraéa is the founder and president of LaVant Consulting, Inc. (LCI), a social impact communications firm that offers cutting-edge corporate development and content  marketing for brands and nonprofits. LCI’s specialty is helping brands “speak disability  with confidence.”

As a communications consultant and inclusion specialist, Andraéa has over a decade of experience working with programs that support youth and adults with disabilities and other underserved populations. She currently serves as  the impact producer for Netflix’s feature-length documentary, Crip Camp, where she is charged with leading the campaign’s efforts to promote understanding of disability as a  social justice issue and build across lines of difference.

Graphic with photo of Curtis, an African-American/Black male with black beard. He is wearing a dark blue jacket, light blue shirt, and striped white, yellow, blue and black neck-tie. A flag of the Commonwealth of Virginia is in the background. Beside the photo of Curtis is a quote from him reading: ““Prioritizing marginalized people and integrating equity into all aspects of disaster response is urgently needed as we continue to face more frequent and devastating disasters across the globe. I am excited to participate in this upcoming session to discuss the experiences of Black people with disabilities during COVID-19 and other disasters.”

Curtis has homeland security and emergency management experience at the federal, state, and local levels. He currently serves as the State Coordinator (Director) of Emergency Management at the Virginia Department of Emergency Management (VDEM).

In 2018, he co-founded the Institute for Diversity and Inclusion in Emergency Management (I-DIEM) a non-profit organization dedicated to diversify the field of emergency management and promote the application of equitable practices to improve disaster outcomes and build community resilience for the most vulnerable communities. Curtis is recognized as a Certified Emergency Manager by the International Association of Emergency Managers. He serves on the Equitable Climate Resilience Advisory Panel for the Institute for Building Technology and Safety (IBTS) and FEMA’s Mitigation Framework Leadership Group.

We are excited to announce Leroy F. Moore Jr. as one of our Black disabled panelists for GADRA’s ‘Experiences of Black Disabled People During & After Disasters: A Global Conversation’ event which will take place on February 18!

Leroy F. Moore Jr., founder of Krip-Hop Nation has been a key member of Poor Magazine since the 1990’s. Moore’s work with Poor Magazine began with his column “Illin-N-Chillin.” He went on to become a founding member of Poor Magazine’s Homefulness and Decolonize Academy. Moore is also one of the founding members of National Black Disability and activist whose work centers around police brutality against people with disabilities. His cultural work includes the documentary film, “Where Is Hope: Police Brutality Against People with Disabilities,” spoken-word CDs, poetry books and children’s book, “Black Disabled Art History 101.”

Image ID: Graphic of Yusuf, a brown man with black hair, wearing glasses and native Nigerian attire known as a qubè and kaftan. He is smiling and looking to his left. Beside him is a quote from him reading: “This is a timely conversation to ‘Build Back Better.’ I hope to discuss what is done, or could be done, to cushion the effects of inflation of imported items during COVID-19 such as food and medical supplies His Twitter username is: m_dyks069. His Instagram username is m_dyks069. His Facebook page can be found at”

Yusuf is a high school literature teacher in Nigeria and Project Coordinator at the Special Needs Initiative for Growth, located in Northern Nigeria.

“Literature is a field that suits me so well, because it draws from social, economic and political events from across history and geography,” he says.

Yusuf says. literature affords him the avenue to excel in understanding the world and explaining it to his students.

Yusuf started to get more involved with advocacy in 2019, during his year of national service, when he joined a Community Development Service group for Sustainable Development Goals.

Graphic with image of Vivienne Isebor, a Black woman with afro hair held by a headband with mixed colored prints smiles looking downward. She is wearing wooden earrings with the Ghanian Adinkra symbol - Mmere Dane, an orange Igbo traditional necklace and an orange sleeveless top. Beside her is a quote reading: “Black people in the West and specifically in Britain are failed by many systems, including healthcare and social support services. This is evident in the overrepresenation within mental health services and high rates of risk with COVID-19. When considering intersectionality, Black people with disabilities are even more at risk and have therefore been forced to survive through community.”

Since being diagnosed with ADHD in her early 20’s and living with mental health difficulties, Vivienne has run awareness sessions and advocated on platforms such as BBC, Mental Health Today and Mind. Isebor is a Trainee Clinical Associate in Psychology, currently studying part-time at UCL and working with individuals with Complex Emotion Needs in East London. She is also a founder of ADHD Babes – the first support group for Black Women and Black Non-binary people with ADHD, where she is the Director of Community Outreach and Wellbeing.

She says ADHD Babes is an example of the community coming together to fill gaps that services create through systematic racism and neglect. ADHD Babes focuses on Black women and Black non-binary people due to the combined challenges they face through the many parts of their living experience including: race, gender (including being gender non-confirming), disability and class.

“When we consider how difficult it is for women with ADHD to get support it is of great concern how marginalised Black women will be within the very same system. Creating this space has been a saving grace for me as an individual and a member of the community. We show up for ourselves each time to offer a safety away from the world that has shown us time and time again we do not matter. We are changing that narrative for ourselves and redefining what it means to be Black with ADHD,” Isebor says.

Graphic with photo of Kaman Kelly Wasup, a Black man with a tropical green button down shirt, long beard, and sunglasses standing in front of a white background. Beside Kaman is a quote reading, “As a Black person and as a person with disability, visual impairment, l observed that Covid 19 news was just a story in the media in Papua New Guinea until the government imposed the shutdown. The delay in getting the news digested into everyone’s mind for awareness and preparedness was as a result of our multicultural practices and systems which made it difficult to process the vital information and news.”

Kaman is the Treasurer at PNG Assembly of Disabled Persons and Chairman at PNG Blind Union in Papua New Guinea. Kaman has facilitated systematic advocacy trainings on disability inclusion since 2018. During Kaman’s trainings, people with disabilities gather to partake in formal and informal advocacy activities. Kaman also runs focus group discussions regarding topics such as utilizing mainstream media for advocacy.

“As a black person and as a person with disability, visual impairment, l observed that Covid 19 news was just a story in the media in Papua New Guinea until the government imposed the shutdown. The delay in getting the news digested into everyone’s mind for awareness and preparedness was as a result of our multicultural practices and systems which made it difficult to process the vital information and news,” Kaman says.

Graphic with photo of Anita, a Black woman with long locs, wearing a maroon turtleneck sweater. Beside the photo is a quote from her reading: “I'm excited to share my experiences as a Black disabled person in the emergency preparedness arena. Blacks and disabled are often left behind in disasters. We must make sure that this ends in our country!”

As a Black Disabled Lesbian, Anita has dealt with racisim, sexism, ableism, and homophobia – sometimes combinations of these. She has used her experience of discrimination and her unique intersectional perspective to promote understanding among different groups of disenfranchised people and increase social justice among those fighting for social justice.

Anita began working as Not Dead Yet’s Director of Minority Outreach in January 2017. She has met with national and state policy makers and written persuasively about opposition to a public policy of assisted suicide from the perspective of communities of color who experience disparities in access to healthcare.

From 2004-2006, she worked at the American Association of People with Disabilities (AAPD) in Washington, DC, as the DC Metro Disability Vote Organizer. Anita also worked as Systems Advocate for the Center for Disability Rights in Rochester, NY, from 2006-2010.

Anita also serves on the National Disability Leadership Alliance’s Steering Committee, as well as it’s Racism Taskforce, and co-Chaired the Intersectional Justice Committee for ADAPT.

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Banner with text: COVID Blog: Freekey is Developing Personal Assistance Services in Hungary Through the Pandemic. There is a photo of a person typing on a keyboard beside a photo of the author.

FREEkey is Developing Personal Assistance Services in Hungary Through the Pandemic

by Borbála Ivicsics

Hello, my name is Borbála Ivicsics, Bori for short. I live in Hungary, located in Central/Eastern Europe. I have been living with a physical disability my whole life, but I would say that I became a disability activist 4 years ago when I participated in a study session organised by ENIL (European Network of Independent Living). This was the first time when I learned of the different models of understanding disability; the medical and social models. In embracing the social model of disability, I realised that most of the barriers for persons with disabilities are built by society, this can be changed, and I want to change that! Since then, I have done a lot of different activities and eventually, another disability activist asked me to join him and his other fellows on a special project, FREEkey.

FREEkey is a new initiative, which aims to establish the Personal Assistance (PA) System in Hungary. Our name came from combining the two words Freedom and Key because our motto is “Personal Assistance is the key to freedom for persons with disabilities”. Also, our name is pronounced like “Freaky”, which is not a coincidence – we proudly confess our freakiness!

Personal Assistance (or Personal Care Attendance) is a support service which provides direct payment to persons with severe disabilities to be able to employ assistants, who help them with everyday tasks, allowing the disabled person to live an independent, self-determined life. This is important to us especially because the Hungarian social system operates a caregiving service that is not flexible and not available on a 24/7 basis; that is not controlled by the users and not based on their choices; and, that is dealing with disability as a medical condition instead of examining it from the perspective of support needs.

In 2019, FREEkey was awarded a grant from the American Jewish Joint Distribution Committee (JDC). FREEkey’s two founders invited 8 people to work as a team on its first project. Some of our members employ assistants either from their own resources or on a voluntary basis. Other members are allies, who are academics in the field of Disability Studies. We believe that the power of our team is in the uniqueness and diversity of this cooperation: we equally value the lived experience and the expert knowledge, and make decisions together.

The COVID-19 pandemic has highlighted that independent living with personal assistance is safer for persons with disabilities than living in institutions or group homes. Also, the national healthcare system was overloaded by treating people with COVID-19, so people with chronic illnesses could not attend their regular doctor visits or medical treatment. We also saw that COVID-19 communications weren’t accessible to everyone at the beginning. With the second wave of the pandemic, a new issue came to the disability community. The government introduced the lock-down regulations, which meant no one was allowed to go out from 8 p.m. until 5 a.m. without an employer’s certificate. This made a barrier for persons with disabilities who have volunteer PAs. This was a problem for some of our FREEkey members too, which had to be solved.

Since we started working, we have achieved that Personal Assistance Service has been added to the Medium Term Measures of the National Disability Program in Hungary. We started a communication campaign to raise awareness on Personal Assistance. Thanks to the high resilience of the team, we successfully adapted our plans to the pandemic situation and started our awareness-raising and outreach campaign with a community video, later followed by a short video, depicting how life is with and without Personal Assistance. 

Based on all the experiences that we gained within the last year, we are committed to continue the work on two levels: we want to further empower ourselves as FREEkey, and by getting stronger as a community, we want to continue our journey as a social enterprise that can provide Personal Assistance Services and function as a role model for further service development.

About the Author

Borbála Ivicsics (she, her) is a professional in disability inclusion from Hungary. She lives with disabilities and started in the field in 2016 when she was invited to participate in a study session organised by the European Network of Independent Living. She was a model at an accessible fashion campaign, her life-size fashion photos were exhibited in a shopping mall main hall in Budapest. Bori went to Scotland for a European Solidarity Corps program and researched the accessibility of the Scottish volunteer world. She is currently responsible for international communications for the FREEey team, which is a disability initiative working on implementing a Personal Assistance System in Hungary. 

Twitter, LinkedIn, FREEkey’s Facebook, FREEkey’s Instagram, FREEkey’s Youtube

Image of article author Borbála Ivicsic, a white woman with purple glasses, medium length light brown hair and a white blouse.

Would you like to write a blog post about your COVID-19 experiences as a person with a disability or a disability-led organization? Submit a blog pitch via this form.

If you are having technical issues or accessibility issues on this site, email

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Banner with text: COVID Blog: How Indian Disability Non-profits are Evolving to Face the Challenges of COVID-19. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of Arundhati Nath, an Indian woman with shoulder length black hair. She is wearing a bright patterned top.

COVID Blog: How Indian Disability Non-profits are Evolving to Face the Challenges of COVID-19

By Arundhati Nath

From global containment failures to the improper development of disaster-resistant systems, COVID-19 has severely affected the economic, social, educational, and healthcare requirements of all individuals, especially those with disabilities. In India, where people with disabilities have traditionally faced adversity because of inaccessibility and stigmatization, this reality is clear. 

When the pandemic hit, funding for non-profit organizations that support people with disabilities diminished. Businesses ceased donating to accommodate for their decreased profits, and any other available contributions shifted to the government’s COVID-19 relief fund, exacerbating the societal effects of the virus and inhibiting the already limited aid that organizations could provide. 

“In April, when I called up a company that had promised to fund us earlier, they had expressed concern that they wouldn’t be able to donate… During the pandemic, as funding has been hit, we had to reduce staff members and are unable to take up any new activities because there is a constraint on available budgets” says Ramya Miryala, Director, Deaf Enabled Foundation, Hyderabad. 

Puducherry-based 25-year-old Satish Kumar is a deaf small business owner with a speech disability. With four family members who are dependent on him, he has felt the direct impact of the pandemic and the reduction of assistance. “Since the lockdown started, we are using the basic essentials very carefully in smaller quantities so that we don’t waste much on it,” Satish says.

Satish and individuals like him are sacrificing and re-adjusting to the new reality of support to protect their families’ wellbeing with self-determination, but millions of Indians with disabilities still do not have their essential needs met, exposing the weaknesses of the pre-COVID support system that identified people with disabilities as just targets of charity.

People with disabilities like Satish are resilient and capable of helping themselves with the proper training, accommodations, and resources. Fortunately, non-profit organizations are beginning to take notice and adapt to a model of support that chooses to empower individuals with disabilities instead of solely depending on the contribution of others. Ramya Miryala’s organization, Deaf Enabled Foundation, is “an organization of the Deaf, for the Deaf, and by the Deaf”, and has noticed that these services are in even higher demand since the onset of the pandemic. “We have seen a surge in deaf people signing up for our free employment-led, skill development online workshops, and we are helping them as best as we can,” says Miryala.

Some empowerment-focused non-profit organizations, like the Delhi-based SCORE Foundation and the NCPEDP, are aiding people with disabilities through dedicated telephone help lines, which provide critical information and answer any questions that someone may have during the current crisis. These organizations are also conducting webinars and online events that teach people how to handle the emotional toll of the pandemic while living with a disability in India. However, the effects of COVID-19 extend beyond the lives of adults with disabilities and require non-profit organizations to also find innovative solutions for providing students with disabilities access to online learning.

With educational institutions closed due to the spread of the virus, accessibility to online education has been a problem for a multitude of children with disabilities. Many parents cannot afford essential technology like laptops, mobile phones or accessible software. Even for those who can, it has not been easy: numerous educational platforms are inaccessible, teachers are inadequately trained, and people fail to understand students’ accessibility needs. 

To counter the challenges posed by online learning and reinforce a sense of empowerment, some non-profit organizations have been conducting accessible online classes, art activities, and recreational sessions, creating an inclusive education and some fun during the pandemic.

There is little doubt that the pandemic has made life challenging for everyone, depleted resources, and generated untold uncertainty. Yet, it has revealed the vulnerabilities in the former system – calling for fundamental change in how we help those with disabilities. As non-profit organizations continue to work hard, evolve, and find new ways to assist adults and children with disabilities, we must embrace a resilient perspective on disability that demands equity and asserts the capabilities and dignity of every human being. 

Links to sources mentioned & references, in order of appearance:

Prime Minister’s Citizen Assistance and Relief in Emergency Situations Fund (PM CARES). PM CARES website

National Centre for Promotion of Employment for Disabled People (NCPEDP). NCPEDP website

The Hindu. “Online classes make learning curve steeper for children with disabilities”, by K.C. Deepika. July 8, 2020.

Indian Express. “Many students with disabilities struggling with e-education, NGOs call for more accessible approach”, by PTI. June 21, 2020.

Efforts For Good. “Goonj Is Working With 1000’s Of Volunteers & Partner NGOs To Provide Covid-19 Relief In 18 States”. April 19, 2020.

The Quint. “India’s COVID Crisis: Why Govt Should’ve Worked With Civil Society”, by Dr. Priyadarshini Singh. September 1, 2020.

CRISIL Foundation. “Pandemic could devour bulk of CSR kitty this year”. June 9, 2020.

IndiaSpend. “PM CARES Received At Least $1.27 Bn In Donations–Enough To Fund Over 21.5 Mn COVID-19 Tests”, by Anoo Bhuyan, Prachi Salve. May 20, 2020.

FirstPost. “COVID-19 impact is massive, but other social causes need CSR funding too, say NGOs”. August 5, 2020.

About the author

Author photo of Arundhati Nath, an Indian woman with shoulder length black hair. She is wearing a bright patterned top.

Arundhati Nath is a full-time, visually impaired freelance journalist and children’s author from Guwahati in Northeast India. She writes about disability and human rights, development, women’s issues, healthcare, culture, the environment, wildlife and conservation. She has been published in The Guardian, BBC News, CSMonitor, Aljazeera English, BBC Wildlife, South China Morning Post, Reader’s Digest and several others. 

Arundhati can be reached at and her work can be viewed online at her website,

Would you like to write a blog post about your COVID-19 experiences as a person with a disability or a disability-led organization? Submit a blog pitch via this form.

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Banner with text: Global Alliance for Disaster Resource Acceleration. Global Alliance logo - 6 arrows wrapping up and around an abstract globe shape, each arrow a different color - red, orange, purple, blue, green, and gray. Background: large matching arrows stretch from the bottom left to the top right of the frame over a pale blue background.

Global Young Leaders with Disabilities Provide Recommendations on Disaster Inclusion Work in Call-to-Action

Screenshot of zoom meeting with performer Jennifer Msumba singing and playing guitar, while an International Sign interpreter, Carol Aquiline, signs alongside her. Caption reads: See it's time to write a new song.

In recognition of the United Nations International Day of Persons with Disabilities (IDPD), the Global Alliance for Disaster Resource Acceleration (GADRA) is proud to release an open captioned recording of Global Disability + Disasters Panel: A Conversation with Young Leaders. Hosted by the World Institute on Disability (WID) and moderated by Priya Penner of The Partnership for Inclusive Disaster Strategies (The Partnership), the November 19, 2020 online event featured four young leaders with disabilities addressing critical policy and program perspectives regarding their inclusion work in four different countries. 

The 90-minute online event started with Jennifer Msumba, the award winning filmmaker and musician, delivering her debut performance of RISE UP, an youth anthem she created specifically for GADRA. The song reframed the debate and set the stage for the panelists’ call to action, including these words:

see it’s time to write a new song 

broken and weak? Yeah, you were wrong

we’re taking our place and we’re standing strong

Rise up!

After her performance, Jennifer explained her song is meant to be strong, defiant and have strength which was a perfect transition to the event’s panelists, listed below.  

  • Sabrina Epstein, Student Researcher and Communications Intern, The Johns Hopkins Disability Health Research Center, Senior, Johns Hopkins University, United States.  Learn more about Sabrina’s work at: Find Sabrina on Twitter: @SabrinaTessEp  
  • Minerva Green, Sophomore, Student Government Association, The University of The Bahamas, The Bahamas. Learn more about Minerva’s work at:   
  • Borbála Ivicsics, International Communications Manager, FreeKey, Hungary.  Learn more about Bori’s work with FreeKey at: Bori is on Twitter at: @ivicsicsbori 
  • Faith Njahîra, Independent Consultant and Co-Founder, Muscular Dystrophy Society Kenya. Faith is on Twitter at: @faywangari

As a moderated panel, speakers addressed how their work and lives have been impacted by COVID-19, reviewed their innovative work and how it intersects with the global pandemic and disaster resilience, and then provided the following recommendations as a call-to-action moving forward. 

  • Educate young leaders on how to prepare for disasters, behave during disasters and how to best access assistance and help after the disasters;
  • Identify how to access resources to support disaster preparedness and recovery;
  • Ensure personal assistance services are widely available, with safety protocols for all parties supported through training and funding;
  • Establish guidance to ensure no lapse in healthcare for people with disabilities;
  • Commit to disaster briefings and emergency announcements include sign language interpreters;
  • Design accessible technology resources and other accommodations for youth and young adults with disabilities in educational settings, including from homes;
  • Provide flexibility in funding to empower people with disabilities to resource their own needs (shifting resources from transportation to distance-based technology when and if the change is warranted);
  • Incorporate Disability Justice in our work, recognizing intersectionality and centering Black, Brown, Indigenous and queer disabled people who are the true experts in disability justice work;
  • Include more people with disabilities at decision points so we are no longer excluded;
  • Acknowledge that mentees may be more knowledgeable than mentors (as elders) and allow young people to shine;
  • Understand that young people have different viewpoints and we ask for you to embrace our approaches and techniques; 
  • Accept that when we point out issues, we are not working against you but rather pointing out that there are ways that we can all do things better;
  • Recruit youth and young adults with disabilities involved in your work.

These 13 recommendations and themes create a road map/resource list for us all.  However, the words of wisdom from these four global young leaders is best received directly by them through the recording! On the UN International Day of Persons with Disabilities, Team GADRA offers the Young Leaders Conversation recording and recommends sharing these stories from Sabrina, Minerva, Bori, and Faith in your organizations and communications channels.  

The panel was made possible with the support of GADRA’s Executive Committee Members and Founder’s Circle. Appropriately, the event included supportive remarks from three key supporters:

  • Tali Bray, CIO, Enterprise Services & Portfolio Management, Wells Fargo (WID Board of Directors);
  • Elaine Katz, Senior Vice President for Grants and Communication, Kessler Foundation (GADRA Founder’s Circle Member);
  • Isabel Hodge, Executive Director for the United States International Council on Disabilities (GADRA Founders Circle Member) and Vice President of Disabled Peoples’ International North America Caribbean.

Event from the United Nations: Action Toward a Disability-Inclusive, Accessible and Sustainable Post-COVID-19 World

December 4, 2020 11 AM to 12:45 PM EST

The event will include representatives of Member States, UN offices, organizations of persons with disabilities, civil society, and the private sector. It will emphasize the importance of disability-inclusive responses to COVID-19 and take stock of progress in “building back better,” including addressing the global policy framework on disability-inclusive development newly adopted by the General Assembly Third Committee this past November. 

Link to learn more about the UN’s IDPD event

Links to learn more about GADRA

Learn more about GADRA, including how to join us, by selecting the linked image:

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To learn more about the Global Disability and Disaster Town Hall meetings, including video recordings,  transcripts, and polling results from previous sessions, visit the Global Disability and Disaster Town Hall page and COVID-19 page on WID’s website via the linked images below:

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Banner with text: COVID Blog: My Disability-Led Workplace Handled COVID-19 Better Than My School and Hospitals by listening to young disabled people. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of Issy Orosz, a young white disabled person with short brown and lavender hair. They are wearing a plaid blazer, black turtleneck sweater, and round glasses.

COVID Blog: My Disability-Led Workplace Handled COVID-19 Better Than My School and Hospitals By Listening to Young Disabled People

by Issy Orosz

As a disabled and queer young person, I wear several “hats” including: a final year high school student, a worker in the disability sector, and someone who has had multiple long-term hospital stays. During the pandemic, my collection of “hats” has filled my life with complexity, confusion, and intensity.  

COVID-19 made my life as a disabled person challenging. Before the pandemic, I relied on consistent supports to maintain my health and wellbeing, however, lockdowns demolished these resources and routines – almost overnight. 

In my last year of highschool, amidst COVID-19 and a failed governmental response, all my classes chaotically shifted online with limited flexibility and capacity for personal differences. This uprooted the foundation that I needed whenever my mental and physical health began to collapse. Instead of focusing on academic success, I was forced to accommodate an already inaccessible education system by lowering expectations of myself. 

These changes severely impacted my mental and physical health. Out of necessity, I sought psychiatric help. Again,even in crisis, after I found a doctor and was admitted to the hospital, I was required to accept and accommodate an antiquated medical system, where I was frequently misgendered, invalidated, and triggered. While I am grateful to have access to a place that guaranteed 24/7 food, safety, and support, I did not completely receive the help that I needed, and I was required to be admitted again, three months after my initial month-long hospital stay.  

Now, as I write this, in the third week of my second hospital stay, I am proud that I know that I am not well enough to leave yet. Yes, it is even more isolating being in a hospital during COVID-19, but I am not better. I am not well. Nevertheless, I am working on it, in arguably the hardest time to work on it, which, for me, is enough.

Despite the adversity faced in the education and medical systems, I have been immensely privileged to be employed as a lived-experience workshop facilitator in a youth disability advocacy service. In fact, I have even had the opportunity to take on extra hours to focus on a pandemic response project. 

Unlike in other areas of my life, the people that I work with are also disabled young people. This has meant that in response to the pandemic, equipped with the understanding and voices of disabled young people, my workplace has been extremely supportive, granting me the opportunity to successfully transition to remote working. Furthermore, when my capacity to work was altered, the organization accommodated and validated my needs.  

The failure of other institutions to meet my needs is apparent and frustrating, especially when juxtaposed to my employer.  

I am abundantly aware of the rarity of a situation as positive as mine in the context of work. Most work environments are just as inaccessible as other institutions. Yet, why should they be? By providing me with the resources and assistance that I needed, I was able to protect my health, contribute meaningfully to my work and the world around me, and succeed. If we provide disabled people the accommodations that suit our individual needs in all aspects of life, we can level the playing field and give us the opportunity to display and reach our potential.    

This period has been the hardest of my life. I have been the most unwell and unstable as ever while being ignored and put at risk by all except my employer.

I genuinely cannot tell you what next week will look like – let alone the end of 2020 and beyond. The nature of being disabled, especially during a time as extreme and unforgiving as this pandemic, is that we are underrepresented and asked to accept broken systems. I have seen that to its fullest extent. However, I will do as much as I can to make it through next week, the rest of 2020, and whatever exists past then. The disability community is strong, and with their support and strength, we can make our voices heard and create a more flexible, accommodating, and kind world, post COVID-19.

About the author

Photo of Issy Orosz, a young white disabled person with short brown and lavender hair. They are wearing a plaid blazer, black turtleneck sweater, and round glasses.

Issy (they/them) is a 17 year old queer and disabled person. They live in Naarm (or so called Melbourne, Australia). They work in the disability and youth space and frequently present and write about disability, education, queerness, social justice, and intersectionality, all from their lived experience. You can find them on social media @issyhay. Their website is

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Banner with text: COVID Blog: Chines Women with Disabilities in COVID-19. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of LuanJiao Aggie Hu, a Chinese woman with a disability. She is smiling, and wearing a beautiful cheongsam with pink trim.

COVID Blog: Chinese Women with Disabilities in COVID-19

by Luanjiao Aggie Hu

Disabled women account for one fifth of global population and over half among all people with disabilities worldwide. Global literature has often documented disabled women’s multiple disadvantages based on gender, disability, and oftentimes poverty status. Disabled women are considered a multiply marginalized population, in that their marginalization occurs based on gender, disability, and the specific experiences of women with disabilities. They often have less educational attainments, lower employment rates, less access to healthcare services, etc. Limited research on Chinese disabled women has further revealed the multitude of challenges they face. 

In China, Covid-19 surfaced in media in January, peaked in February, and seemingly came to an end in March. For months, Chinese people were under strict lock-down policies. News reported the surge of domestic violence against women during this time. How did Chinese disabled women fare in the pandemic? A Beijing-based organization – Beijing Enabled Sister Center realized the urgency and coordinated the distribution of sanitary pads and diapers for women with disabilities in need among other assistances. The organization also encouraged disabled women to share their experiences and stories during lockdown. As a Chinese disabled woman studying abroad, I contributed a piece detailing my own experience and perspective during Covid-19. As a researcher with disability, I took interest in the stories and studied the narratives from around 30 disabled women who were of diverse geographic locations, socioeconomic statuses and disability categories. In addition, I examined news on gender and disability in Covid-19 and talked to disabled women leaders to learn about the changes in their lives. Summarizing different ways in which disabled women were impacted, I realized that the women’s voices revealed more than what the literature documented.

To start, the narratives showed difficulties disabled women experienced in the crisis. At the threat of the pandemic, disabled women expressed their higher risk of infection and mortality. While navigating in a quarantined version of daily environments, vision or mobility impaired women found themselves at higher risk of getting infected due to assistive devices touching contaminated surfaces or use-of-touch in daily lives. Concerned about their underlying conditions and immunocompromised physiological statuses, disabled women voiced that they would not survive if infected. Some women had to cancel or delay their doctor’s appointments and/or personal assistant’s home visits in fear of increased exposure and possible infection. 

Second, disabled women faced challenges accessing information, supplies, food, transportation, and healthcare services during quarantine. When the pandemic hit, rarely any news channels in China provided sign language interpretation or closed captioning. In Hubei Province, the epicenter of the outbreak, the deaf and hard-of-hearing community lagged behind in obtaining COVID-related information; therefore, they experienced the lag in the purchase of necessary supplies to prepare for the quarantine. 

Video screenshot of a deaf Chinese woman signing over news b-roll.
Image of a video screenshot showing a sign language interpreter and teacher in China. She is deaf and also a social media influencer. She was the first person in China to make Covid-19 information videos in sign language to reach deaf and hard-of-hearing communities. Her videos were shared by government official accounts and reached millions of people.

Due to lockdown policies and shortages of goods, some disabled women mentioned about running low on diapers and feminine hygienic items and feared for bedsores and other complications. Women with mobility impairments who lived alone found themselves in a dilemma when they tried to shop online in bulk. The items they purchased online could not be delivered to their homes due to strict quarantine measures: gatekeepers of apartment complexes and neighborhoods prohibited any entry of external visitors including delivery personnel. In one narrative by a disabled woman who resided in a rural village, she expressed worry about food shortages. 

A deaf woman bundled up in a heavy coat, knit hat, disposable gloves, and a face mask pulling boxes of supplies using a small 2-wheeled dolly. She is giving a thumbs up to the camera.
Image of a deaf woman transporting supplies for distribution to local deaf communities in Wuhan, Hubei Province, the epicenter of the Coronavirus outbreak

Women also shared their negative experiences with accessing healthcare services during Covid-19. A woman in Taiwan found herself in an inaccessible hospital when she needed testing. She ended up staying in her wheelchair for the night with no accessible restroom to use.

A Taiwanese woman reclining in her electric wheelchair inside a makeshift hospital room inside of a tent. Her jacket is draped over her legs like a blanket.
Image of a wheelchair user woman in Taiwan; she documented her experience quarantining in an inaccessible hospital to raise awareness about disability-inclusive treatment in Covid-19

Another major impact disabled women mentioned was economic, with income and job losses. Women experienced financial pressure as neither they nor their families could work for months. Some women in personnel roles were faced with either salary cuts or threats of losing their jobs. There were also women who were fired without any compensatory packages during Covid-19. Faced with cancellation of programs and funding, some disabled women organizational leaders had to reduce their own salaries to sustain their organizations. 

Despite the difficulties, I have especially observed great agencies and multiple roles disabled women exhibited in their natural settings (see images). In the narratives, women were caretakers, business owners, frontline essential workers, community organizers, volunteers, among many other roles. Disabled women took care of their elderly family members and young children during the quarantine. Many women stayed home and continued to work remotely. For example, disabled women customer service workers volunteered to support the huge demand at the surge of online shopping during Covid-19. Many disabled women joined a volunteer-based disability support network to assist with individual case support, creation of accessible information, and coordination of donations for local communities. Some disabled women shared how they had been ‘stay-at-home experts’ prior to Covid-19 due to inaccessible work environments, and they were able to provide counseling support to other people who were now forced to shelter at home and struggle with mental health during quarantine.

A disabled woman of East Asian descent sitting next to a child coloring and writing with crayons.
Image of a disabled woman who owns a home-based tutoring business. She was forced to drop out of school due to lack of reasonable accommodations during her formal schooling years but had taught herself through non-formal continuing education. She was the caretaker for her two children at home while working as an online tutor to support her students during quarantine.

In my contact with disability activists and advocates in China, I realized that many of them were so swamped with working in the local communities that they often lacked the time, energy, or sometimes the tools to engage in documentation and research. In addition, with increasing visibility on gender and disability respectively, there has not been much research shared on the intersection of gender and disability. It is with this understanding that I took interest in conducting the research on Chinese disabled women throughout this pandemic. 

It is my hope that we see and acknowledge the personal agency disabled women have exerted, and the crucial roles they played in their homes and communities during Covid-19. The pandemic highlighted and exacerbated many existing challenges disabled women face in their lives. It is crucial that we work to remove the systemic barriers that multiply across intersections of marginalization, putting women with disabilities in doubly or triply disadvantaged situations. Additionally, it is imperative that disability-inclusive responses be put in place at times of emergencies and crises. Only through commitments and actions of inclusion and equity, can we ensure dignity and prosperity for all. 

Links to articles and images mentioned, in order of appearance:

Le Yirong-Disabled Sisters Story Group. “Women with Disabilities in the Epidemic: Epidemic Calendar of Overseas Education Doctors”, by Hu Luanjiao. May 13, 2020.

Le Yirong-Disabled Sisters Story Group.“Disabled women under the epidemic: I am from Wuhan, I am a deaf woman”, by Doudou Jun. February 25, 2020.

Le Yirong-Disabled Sisters Story Group. “Disabled women under the epidemic: Sign language broadcasts epidemic prevention news is so hard-core”, by DUDU. March 22, 2020.

Central News Agency. “The handicapped will be tested and isolated and sleep in a wheelchair, forced to dig in a hospital bed and become a nightmare”, by Chen Weiting. May 17, 2020.

Le Yirong-Disabled Sisters Story Group. “Disabled women under the epidemic: a different winter vacation”, by Shi Xuejiao. May 16, 2020.

About the author

Author photo of LuanJiao Aggie Hu, a Chinese woman with a disability. She is smiling, and wearing a beautiful cheongsam with pink trim.

LuanJiao Aggie Hu is a doctoral candidate at the University of Maryland, with a focus on disability studies, gender studies, and education for people with disabilities. She identifies as a person with disability, a feminist, and an activist scholar. 

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Banner with text: COVID Blog: This Precious Thing - Kindness, Rights, and New Zealand's COVID Response. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of a smiling Henrietta Bollinger, a white disabled person with short dark hair. Photo by Rona Aitken.

COVID Blog: This Precious Thing – Kindness, Rights, and New Zealand’s COVID Response

by Henrietta Bollinger

Mere days before New Zealand’s lockdown was announced, a journalist interviewed my flatmates and I about our concerns in the face of a pandemic.  She had done a lot of reporting on disabled community issues, so we trusted her. We glanced sidelong at each other, laughing into the phone on our kitchen table when she asked what we enjoyed doing.  I want readers to see you as people, you know?

Erin, Stace and I are all disabled community advocates.  Even our ginger cat Wilson is developing an international Twitter following of disabled and/or queer people we intersect with – invested in his mood, health, and hot takes. Our dinner table conversations can move almost imperceptibly from asking, Hey, how was your day?, to analyzing the relevant articles of the United Nations Declaration on the Rights of Persons with Disabilities. 

The day we were interviewed, the fear had just become palpable to me – particularly among my disabled friends. We worried about everything from access to food to how the health system would cope.  I worried about getting the support I need twice a day. We had started stocking up on PPE – a good move given that none was supplied to us until a week before lockdown ended. 

Our flat has been together for about a year now. We have a home that actually meets our needs – something we don’t take for granted. There is nothing like the Americans with Disabilities Act to regulate housing accessibility here. The housing crisis is acute – we rage while watching news items about disabled kids living in garages.  My flatmates tell me they’re never moving out.

Stace Robertson, Etta Bollinger, and Erin Gough, at their Wellington flat with Wilson the cat.

Living here involves a lot of laughter– in recognition of each other, of living daily with the absurdity of ableism and hetero/cis-normativity. We’re a support network for each other. Like many households, we wouldn’t escape the lockdown without putting some pressure on this precious thing, but for me, it was still the best place to be for weathering this unknown. 

The wider word felt heavier than the small one under my roof.  Solidarity can also feel like heartbreak. I cried over Facebook posts about the Welsh surgery that wrote to disabled patients asking them not to call Emergency Services, implying this would be more considerate of others. I felt sick reading about a wave of Covid cases in a New York home for disabled people. I stayed up late writing a letter to the British Minister for Disabilities but lost the nerve to send it. I turned my attention to my own situation. 

Our Government came to power positioning itself as a compassionate administration. I am grateful for this. I am relieved about the prioritization of people over economy that has characterized the response. Many people are emphasizing that during this time, choosing kindness is essential. Kindness in the context of the pandemic is most simply understood as helping people more vulnerable than yourself.  

All the same – the rhetoric of kindness is hardly instantly reassuring to disabled people. Kindness towards us is so often linked to charity and paternalism. It positions us as dependent upon the whims of the non-disabled world to both determine, and grant us our basic needs. I told our interviewer that New Zealand’s response couldn’t simply be about kindness, it had to be about rights. 

 The lawsuit, Borrowdale v Director-General of Health, questions the legality of our lockdown, claiming that although the order was necessary, it violates the rights of freedom of movement and assembly, which are guaranteed in the New Zealand Bill of Rights. The case has since made it to the High Court, but it feels to me largely like a disruptive, academic exercise. These are far from  the rights that my friends and I are worried about right now.

A friend had called me with a shrug of resignation in her voice. She said, “If our medical system goes the way Italy’s has, I just won’t be prioritized.” I didn’t try to comfort her. Perhaps she was being a realist. Kindness is not always enough to keep us alive.

Having to often depend on the kindness of others generally places disabled people outside the non-disabled world’s frame of reference for who and what is essential. Disabled people are essential workers, parents, or otherwise part of the unseen economy that will get us through.  The concept of ‘the bubble’ – the central analogy our Government uses to describe how people should limit or expand their social contact – was first proposed by a disabled academic, Dr Tristram Ingham.

Understanding the potential power of disabled people has not made me feel safe, though. Going into lockdown I had simultaneous feelings of vulnerability and responsibility. Navigating my responsibility to my support workers as an employer was not new. In the shifting legal landscape of the pandemic response, the limitations of the system left me alone at critical moments. I didn’t know if I would have a full support team over lockdown, or adequate protections for them if they did work. 

My flatmates helped me move through this uncertainty. From my team of three, two support workers continued coming into our home. They became my contact points for everything: making food, picking up extra shopping, visiting my room when a cold cut me off from the rest of the house, providing most of my physical touch, albeit through latex. 

How was your lockdown? is too quickly becoming a ubiquitous nicety, one that suggests that this crisis has passed. Outside Auckland – where case numbers are higher – we are experiencing reprieve, easily forgetting how fragile things are, while many  disabled people continue to fear the deadly repercussions of relaxing safety measures. I struggle keep my reply personal. The people around me understood my rights, and they were kind. I respond, Well, I was lucky

Links to articles and sites referenced, in order of appearance:

NZ Herald; ‘All I want to do right now is hide’: What it’s like living in deadly fear of coronavirus, by Kirsty Johnston. March 21, 2020.

The Guardian; Welsh surgery apologises over ‘do not resuscitate’ instruction, by Mattha Busby. March 31, 2020.

The New York Times; ‘It’s Hit Our Front Door’: Homes for the Disabled See a Surge of COVID-19, by Danny Hakim. April 17, 2020.

The Spinoff; Unlawful, but necessary and reasonable: making sense of the High Court ruling on the lockdown, by Andrew Geddis. August 20, 2020.

Stuff; Dr Tristram Ingham, the brains behind the COVID-19 ‘bubble’, by Josephine Franks. July 18, 2020.

About the author

Author photo of a smiling Henrietta Bollinger, a white disabled person with short dark hair. Photo by Rona Aitken.

Henrietta (Etta) Bollinger is a writer and disability rights advocate. Etta has had poems appear in Starling, Mimicry and Scum magazines and plays staged  in New Zealand, Australia and the UK. Etta lives with two other advocates and their sympathetic cat. Etta is currently writing a first book about life as a disabled person.

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