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COVID Blogs: Intensifying Medical Hazards for Persons with Disabilities

by Abha Khetarpal

The COVID-19 pandemic has disconcerted everyone on this planet. Varied scales of interventions, strategies and manoeuvres are being initiated and tried in alignment with the evolving situation. But worldwide, a community that is facing the brunt of this public health crisis is the disability community. People with disabilities, more than one billion people all over the world, are feeling all the more marginalized and isolated. Their plight is even worse in low income and underdeveloped countries where healthcare access is a real challenge for them.

Persons with disabilities are in many cases more susceptible to coronavirus infection, but systemic discrimination against people with disabilities remains interspersed, from testing to treatment.

Having a disability doesn’t necessarily put someone at a greater risk of getting the infection, but in certain disabilities or chronic conditions, the contagion may prove perilous. Those who are undergoing post-polio syndrome may show drastic changes in lung function and are more prone to pneumonia. In musculardystrophy, progressive weakness of respiratory muscles can result in varying degrees of breathing difficulty. Respiratory issues after spinal cord injury (SCI) is more severe in high cervical injuries, with low lung volumes and respiratory muscle weakness. People with psychosis are linked with cardiovascular and respiratory diseases. Those who have immune system disorders like Multiple Sclerosis, Ankylosing Spondylitis, HIV/AIDS, Lupus, and Sickle Cell Anaemia are at a greater risk of critical illness if they get infected with COVID-19, because the virus attacks the immune system. Epilepsy, being a neurological condition, is also included in a list of conditions that may increase the risk of serious COVID-19 infection. Health alerts, advisories, and hygiene measures are not accessible to all.

As a person with disability with weak lungs due to post polio syndrome, I have my own fears. With increase in number of cases and threat of community spread, demand for medical supplies and ventilators is increasing, and in case of rationing of supplies or treatment, I could be on the losing side of a doctor’s life-or-death decision.

In countries like India, lack of testing, inaccessible testing centres, inaccessible pharmacies, and exorbitant cost of treatment pose a greater threat for people with disabilities. Quarantine facilities present many of the same concerns, in addition to high exposure to other people, presenting reinfection risks. Moreover, persons with disabilities in India are not covered by healthcare insurance, leaving them with no option but reduced or limited access to healthcare services.

Exposure to healthcare barriers has accentuated their vulnerability to infection and complications, putting people with disabilities in a catch-22 situation. Apart from the distress caused by the contagion, secondary health conditions of disabled people are being totally neglected. The greater the degree of inaccessibility, the more that additional health conditions are exacerbated.

“I am more prone to produce ear wax and normally have to visit a healthcare facility to get it removed. This time I could not visit my hospital due to the lockdown. My personal attendant tried to remove it at home with cotton buds but because of spasticity of my muscles, the wax was pushed deeper inside and created a blockage. Now I have developed hearing loss and the pain is increasing every day. At present, the hospitals are restricting visitors amid the pandemic. She is neither able to visit the hospital nor do I have any access to doorstep medical services”, says Meenu Mani Arora. She is a resident of National Capital Territory of India, and is a woman with cerebral palsy. She uses a power wheelchair and needs assistance in everyday tasks. Inability to get medical help even for a minor procedure has lead to her hearing loss and severe ear infection.

Necessary physical therapies and occupational therapies are not available during lockdowns, as these are not included in essential services. As for my personal experience, in the absence of physical therapy I feel greater muscle stiffness and lack of blood circulation in my limbs.

Persons with blood disorders and Thalassemia patients have faced an acute shortage of blood in the blood banks across the country as blood donation drives have been called off due to lockdowns and red zone areas.

From these examples, we can imagine the level of suffering and challenges faced by hundreds of thousands of persons with disabilities due to non-availability of adequate medical facilities.

Controlling contagious disease requires immediate access to care, and a minimum of red tape and affordability barriers. Article 25 of United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) clearly mandates the State parties to recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without any discrimination.

The key learning from COVID-19 is the significance of a strong public health service. We need a more sustainable and accountable health system that serves us all.

Links to documents referenced:

Report: 1 billion people with disabilities globally

Human rights expert, Catalina Devandas

ILAE: Epilepsy & COVID-19


Abha Khetarpal, an Indian woman, sitting in her power chair and smiling. She is wearing a beautiful orange tunic and deep red pants.About the author

Abha Khetarpal is a Counselor, writer, motivational speaker, teacher, and activist with polio from New Delhi, India. You can find more of her writing at Point of View, Sexuality and Disability , Feminism India, Medium, and Youth Ki Awaaz.

Social Media profiles:

Abha Khetarpal’s Facebook

Abha Khetarpal’s Twitter: @Khetarpalabha

Abha Khetarpal’s LinkedIn 


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Launch Event: Global Alliance for Disaster Resource Acceleration. Thursday, July 9, 2020. Logo for the Global Alliance for Disaster Resource Acceleration. 6 arrows wrapping around an invisible sphere, each a different color - orange, red, purple, blue, green, and gray.

Launch of the Global Alliance for Disaster Resource Acceleration

The World Institute on Disability, The Partnership for Inclusive Disaster Strategies, and ONG Inclusiva invite you to please join us for the launch of the Global Alliance for Disaster Resource Acceleration.

Thursday, July 9, 2020

9 AM Pacific Time/ 12 PM Eastern Time (NY Time)/ 4 PM Universal Time 

Captioning in English and International Sign. For additional access needs, please contact kat@wid.org.

Register: https://buff.ly/3fDFAYY

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When disaster strikes, disability-led organizations are on the ground right from the start, trying to fill the gaps without equitable access to traditional disaster relief channels.

As we have continued to engage hundreds of disabled leaders and disability-led organizations from around the world in our Global Disability and Disaster Town Hall discussions, it’s clear from their stories that it’s time for a new approach to disaster response, relief, and resilience.

The disproportionate impact of the COVID-19 pandemic and disasters on multiply-marginalized people with disabilities necessitates the acceleration of resources to disability-led organizations meeting the needs in their disaster-impacted communities.

Based on input from disability leaders and funders committed to improving disaster outcomes, we’re building an alliance to disrupt exclusion and accelerate radical inclusion. Together, we can move resources faster and more equitably to ensure that disability-led organizations have the tools and resources they need.

Please join us at our launch event to find out how you can become a part of this exciting new initiative – it’s going to take all of us!
Seeking disability-led organizations, disabled leaders, foundations, corporate partners, and all others interested in building a global alliance that shifts power to the disability community.

Link to download full invitation for the launch of the Global Alliance (Accessible PDF)

Link to download plain text version of the launch invitation (Word doc)

Text file (.TXT) available by email at info@wid.org

Flat PNG (click to open PDF):

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Register: https://buff.ly/3fDFAYY

For more information about the Global Disability and Disaster Town Halls and that informed the creation of the Global Alliance for Disaster Resource Acceleration, click on the linked image below to find video recordings and transcripts:

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For more information about WID’s COVID-19 response, click the linked image below to visit our COVID-19 page:

Banner text: COVID-19. Icon of N-95 mask with tiny WID globe on the filter, and two oversized coronavirus molecules. Background photo of an enlarged illustration of COVID molecules with magenta tint.


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Text over ACLU banner: WID Joins Petition to US Department of Health & Human Services for urgent relief RE: COVID-19 Response in Nursing Homes and Other Congregate Settings Where People with Disabilities Live

WID, ACLU, & Disability Rights groups File Petition with US HHS: Deadly Nursing Home Discrimination

June 23, 2020 – For immediate release

COVID-19 Deaths in Nursing Homes are Not Unavoidable — They are the Result of Deadly Discrimination

World Institute on Disability joins with ACLUSEIUThe Autistic Self Advocacy Network (ASAN)Disability Rights Education and Defense Fund (DREDF)Partnership for Inclusive Disaster StrategiesAmerican Association of People with Disabilities (AAPD)National Council on Independent Living (NCIL) in petitioning U.S. Department of Health and Human Services (HHS) for immediate relief:

Re: COVID-19 Response in Nursing Homes and Other Congregate Settings Where People with Disabilities Live
Dear Secretary Azar, Director Redfield, Administrator Verma, and Director Wright:
Pursuant to 5 U.S.C. 553(e), please find the petition from the American Civil Liberties Union, Service Employees International Union, American Association of People with Disabilities, Autistic Self-Advocacy Center, Disability Rights Education and Defense Fund, National Council on Independent Living, Partnership for Inclusive Disaster Strategies, and World Institute on Disability requesting modification or rescission of various agency actions taken in conjunction with the COVID-19 emergency regarding nursing homes and other congregate settings where people with disabilities live.
Given the emergency nature of the pandemic, we expect a response to this petition within three weeks.
In the absence of relief within that time frame, we will proceed accordingly.

For more information on WID’s COVID-19 response, visit our COVID-19 page:

Banner text: COVID-19. Icon of N-95 mask with tiny WID globe on the filter, and two oversized coronavirus molecules. Background photo of an enlarged illustration of COVID molecules with magenta tint.

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Text: Global Disability + Disaster Town Hall: Session 2. Collage of ears, speech bubbles, hands signing, and a hand using a communication board.

Global Disability + Disaster Town Hall, Session #2: June 4, 2020 – Transcript

>> Kat: It’s just after 9:00 a.m. on the Pacific coast.
It is 1:00 on the east coast.
I think we’re ready to begin.
I just want to go over a few housekeeping items.
First and foremost, hello and welcome to WID’s second global disability and disaster town hall.
I am Kat Zigmont, WID’s Director of Operations.
First, we would like to announce that we are recording this meeting.
It is also currently being streamed on Facebook live on WIDs Facebook page which is facebook.com/WorldInstituteonDisability and I would be happy to put the link in the chat for everybody right now.
Additionally, we have captions, built in to the Zoom meeting.
But if you prefer I’m putting an additional link to captions, and that will give you a full screen of captions.

After we present opening remarks, we’ll start with speakers who submitted request to speak. Then we’ll open it up to all attendees who want to share their experience.

If you would like to speak, you can submit a request to speak using our chat feature.

Simply say “I’d like to speak” to be added to the queue.

We will also be monitoring the Facebook live feed and can answer questions or relay a short message on people’s behalf.

If you are selected to speak, please begin by saying your name, where you are from and name of your organization.If you have one.

We want to try and learn from as many of you as possible so please keep your remarks to 2-3 minutes to outline the issue you are raising, and potential solutions.

Ultimately, we want to learn what disability-led organizations need to continue their operations to meet the needs of people with disabilities in this COVID-19 pandemic, in other disasters you’ve experienced, and disasters sure to come.
We also want to hear about your experiences in seeking and obtaining disaster relief funding for preparing for disasters, your operations during disasters, and your involvement in community recovery.
We want to understand what’s working and what’s not working.
When I select an individual to speak, I would like to remind you to speak loudly for the captioner and interpreters. And slowly.
We would love all speakers to open their video feed when it is their time to speak.
I will change your status from attendee to panelist, there will be a brief interruption of your connection, but don’t worry, it’s a 2-3 second disruption then you’ll be back in the webinar.
Additionally we’ll have three survey poll questions that we’ll be asking you all to answer.
When a poll is launched you’ll receive a notification on your device that will include the question and multiple-choice answers.

This is an accessible process.
I will also be reading the questions and answers for you to choose from, out loud as it is captioned and signed.
Everyone will have time to make a selection and when all have answered we will share the results.
Lastly, we do hope you will share and tweet about this WID Town Hall Listening Session and the very important issues that you all will raise today.
We would love it if you would use #WIDTownHallC19 on the various social media platforms.
I will also put that in the chat for everyone.

I think that is everything to get us started.
I’m going to turn over to Marcie Roth, WID’s Executive Director and Chief Executive Officer who will kick us off today.
Thank you, Marcie.

>> Marcie: Hello, everyone.
I really appreciate having the opportunity to once again bring folks together.
And to get us started this morning I first want to turn over to my dear friend and ally,
German L. Parodi, who is the Co-Exceutive Director of the Partnership for Inclusive Disaster Strategies, WID’s partner today and in all of our disaster and disability work.
German will share his thoughts about solidarity for all who are calling for an end to police violence following the murder of George Floyd.
German?

>> German: This is German Parodi, thank you, Marcie.
The Partnership is a U.S.-based disability-led organization for cross-disability inclusive public health and emergency management.
Last Monday, May 26th, as Marcie just explained and as all of you have may have seen on the news or participated in your country in support against the murder of George Floyd.
We condemn the police violence and racism that has led to this death and so many more.
In solidarity with Black and indigenous communities and people of color, we demand justice for all victims of police violence, across the United States and across the globe.
Systematic racism is not new.
Many of us across the globe have experienced it cross-generationally with different names, colonialism, imperialism, the fact of the matter is right now across the globe we do not need harmful systems, we need to call them out together and create spaces that do not further disrupt the already difficult experiences, that we are all together in experiencing due to this quarantine — the impact psychologically on all of us individually and as a society needs to change because it is people with disabilities, those of us most marginalized that will not see this time through. Please join us along with WID and ONG Inclusiva and so many others in your country, in your community, call out harmful racist systems.
This is not the time to be doing this, in fact, it is time to come together and change.
We need to do this, it is a disaster and it is our focus to reduce their risks.
They are not going to go away in a day.
But when situations like this rise, our traditional systems fail.
We are based, myself and Shaylin in Philadelphia, Pennsylvania, where there is no access to food.
There is no access to pharmacies.
They have been boarded up or vandalized.
The situation must change because there is pain.
And in this pandemic, that is still not going to go away, it is time for all of us to come together with a unified voice of peace, love, and unity.
I’ll close with remarks from within efforts of the partnership, you will find on our website a statement against police brutality and racism.
We are beginning cooperation across our region with the disaster risk reduction and disability networks of Latin America and the Caribbean.
We look forward to further establish a community resilience module that can be in multiple languages with a lens of COVID-19 and public health lens.
The work must continue. We must do it together.
To you, Marcie.

>> Marcie: Thank you very much, German.
We appreciate and respect your leadership and your strong voice, here in the U.S. and globally.
WID joins in the call for an immediate end to police violence against Black people.
The cruel injustices faced by people with disabilities must also end.
WID joins in calls for redirecting funding for mass incarceration and institutionalization.
Funds used for programs that allow and perpetuate violence, abuse, and neglect must immediately be directed to resources, services and programs needed for people to live in freedom, at home and in their community.
Since March, hundreds of thousands of people with disabilities, perhaps even millions across the world, have died from COVID-19.
Disproportionately these are disabled people of color who have experienced violence and neglect that is farther exasperated — exacerbated in disasters.
I also want to take a moment, WID remembers disability justice leader, Stacey Parks-Milbern, founder of the Disability Justice Culture Club, who died two weeks ago.
Stacey and I were allies in our disaster and disability work, and her leadership was and always will be a very bright star for so many to follow in our commitment to relentlessly working towards achieving disability justice in all of our work.
Again, I want to thank everyone for joining us today.
We have had more than 300 people RSVP that they were joining us today on Zoom.
We have many, many others who are joining us on Facebook live.
As you may have discovered from our last town hall, we will be sharing the captioned video of this event on our website as soon as we can get that captioning embedded for sharing.
I am excited to tell you that we have folks joining us today from at least 25 countries.
And from six of the seven continents.
The only continent that is not represented on the call today is Antarctica.
And we need to work to make sure that the next time we all come together that we do in fact have folks joining us from all seven continents.
During our first Global Disability and Disaster Town Hall, we learned some very interesting information from each of you.
We asked some questions, we will also do that today.
And we wanted to understand whether disability-led organizations are able to access disaster relief funding from government, corporations, and foundations.
We discovered that in fact, everyone who responded to our poll agreed that at best, sometimes — only sometimes, folks were left out.
But a resounding 64% told us, yes, definitely disability-led organizations are left out of disaster relief funding.
We also asked, during this COVID-19 pandemic, do disability-led organizations have what they need to serve their local communities?
And only 2% answered that, yes, definitely, disability-led organizations have what they need to serve their local communities in the pandemic.
So, today we will use this time to hear from folks from across the continents who have asked to tell us what their experience is, what the experience is of their disability-led organizations.
And we will get some more information from each of you and we will end the day with some information about where we hope to go from here, where you all might want to be involved in this continuing discussion.
And how we might be ready for the next disasters, whether it is a concurrent disaster to the pandemic or whether it’s any of the disasters to follow.
We’ve reviewed our May town hall and the purpose of today’s webinar.
And I’m going to ask Kat to lead us through our first poll for the day.
Over to you, Kat.

>> Kat: Thank you.
All right.
Launching our first poll.
Our first poll question is, would you like to be a part of an alliance between disability-led organizations and funders that could accelerate resources?
The answers are, yes, definitely.
Or, no.
We’ll give people a little bit of time to vote.
I see about 40% of you have voted so far.
Votes are still coming in quite swiftly.
We have about 60% of the callers have voted.
We’ll give everybody a few more moments.
We still have people coming in.
We’re at 63%.
One more moment.
All right.
Go ahead end the polling here.
I just shared the results.
As you can see, we have 93% yes, definitely.
And 7%, no.
So the overarching majority would like to be part of an alliance between disability-led organizations and funders.
Very interesting and good information.
Shall we start with some of our speakers, Marcie?

>> Marcie: That sounds great, Kat.
Glad to see we have so many folks who want to continue this discussion and continue working together.
Our first speaker is Robert Nkwangu from Uganda. We’re so pleased to have you here, Robert, and look very much forward to hearing from you.
Please go ahead.

>> Kat: Robert, go ahead and share your camera.
>> Marcie: I saw Robert a moment ago but not quite yet.
>> Kat: He is here.
>> Marcie: Give him another moment then we can always come back.
>> Kat: Absolutely.
>> Kat: Just checking in.
Robert?
>> Marcie: This is Marcie.
We’ll work with Robert on technology.
And let’s now turn to Misty Dion, she has been leading a really exciting effort in the U.S. in Pennsylvania.
And we’re pleased to have the opportunity to hear from Misty.
Please go ahead.

>> Misty: Hi, Marcie and all others joining us.
Thank you for having me.
My name is Misty Dion I work with the Roads to Freedom center for independent living in north central Pennsylvania.
I’m a member of our state Pennsylvania ADAPT and national chapters.
And I am the president for the Pennsylvania Council on Independent Living.
Through COVID-19 we have continued to deliver nonessential life-sustaining services remotely and essential and life-sustaining services, often in person, with personal protective equipment and social distancing practices when possible.
We are working even more now, harder now I should say, to save the lives of the many people we serve that are currently locked in congregate settings.
We’ve recently built a program that focuses on providing relief and relocation services for the individuals in these settings.
As you’ve all seen across the nation, congregate settings are both unsafe and inhumane.
In our state alone, 70% of the COVID deaths have resulted from congregated settings.
In the county that we are located in, 100% of those deaths are in one nearby facility, which is what caused us to work with our local hotel owners, restaurant owners, the state, and commissioners to activate this relief and relocation program.
It is our hope that many others will be able to offer similar programs like this so that the people living in the congregate settings have the chance of survival.
In many of these settings they’re sharing rooms with more than two people.
And there’s very rarely a location where they can be safe or practice social distancing.
I hate to use the analogy of these buildings being on fire, but to me, that is exactly what is happening.
In many cases as we see in these settings, when there is a fire, people with disabilities who otherwise could evacuate are being told to bunker down.
We’re against this.
And we’re working hard to free our people locked in these settings.
Thank you, Marcie.
[ loud noise ]

>> Marcie: Thank you, Misty, and very much appreciate your leadership. Unfortunately I now have a very loud noise outside my door, so I’m going to move on very quickly.
Next we will hear from Dayro Reyes from Colombia with Asopormen who will speak about what has been happening in both the healthcare and education sector and the lack of services, and Dayro, please forgive me, I’m sure I butchered your name.

>> Kat: Hi Marcie, unfortunately I don’t see Dayro today.
I am going to — I think we should move on to Asha from India.
I’m so sorry.
Let me see if I can get Asha on.
Asha is connected.
And she is from SMRC in India and would like to speak on issues of women with disabilities. Asha, go ahead and share your camera if you like.
Asha?

>> Marcie: Looks like Asha is having a little bit of technical difficulty.
We’ll give her another minute.
>> Kat: Okay.
There she is.
>> Asha: Can you hear me now?
>> Kat: Yes.

>> Asha: Hi, Marcie.
Good to see all of you.
I wanted to talk about women with disabilities.
Because we have been working on that for a very long time.
And had a big project on Article 19.
Then when the lockdown came, we were told to shut down the whole of the country in four hours.
So you can imagine people without medical, without food. It was a huge issue because we could not get to people physically.
And —
>> Kat: Oh, no.
>> Marcie: One of the challenges, this is Marcie speaking.
Asha is back. Go ahead, please.
>> Asha: We have a strong wind blowing — that’s why power keeps going on and off and the Internet.
But to let you know that the issues of women and disabilities have been mostly food and security.
That has been no food for many of them.
Access to food is very, very difficult and also because all the patients in the hospitals are closed.
They cannot go to hospital to get care for other issues besides COVID.
So that is a major, major issue.
Now they’re talking about bringing telemedicine, and telemedicine without accessibility means that most of them will not get any reproductive or sexual health care at all.
So these are major issues, the third one is that of homelessness.
A lot of people out on the streets, because they have been thrown out of their homes, many women.
And that can create a lot of insecurity, and also a lot of sexual abuse of women.
So that is another issue.
Another one that we are having is with the quarantines.
Though the government has said that quarantine, men and women will be in separate rooms.
But in a school where there are 500 people in the quarantine,
With five toilets, it is not possible to do that.
Again the issue of accessibility into the quarantines.
Many times personal attendants are not allowed, and women find all these issues of very, very big — what cannot be — it’s impossible to work on that.
Especially when you have no access to them.
So we have been trying with the government to sort out some of these issues but we feel that all of you should write to the U.N. agencies that at least to the state parties now since — we should at least tell them that these women —
>> Marcie: While we’re waiting for Asha to reconnect, this is Marcie.
Asha is calling on all of us to write to the Secretary General of the United Nations.
And to the state parties — due to the fact that the conference of state parties for the convention on the rights of persons with disabilities is currently cancelled.
Go ahead, Asha.
>> Asha: So that is one thing that if something could be done for a forum like this to write the secretary general and U.N. agencies to do something it would really be very, very helpful.
We are working in the country, the national disaster management which is now the authority in charge of the pandemic.
I wrote the disability guidelines for them last year.
But that did not include the pandemic.
So now we have to redo the whole thing.
Which we have done to some extent, but is still needed.
We need a lot of legal aid.
And I think one thing that you pointed out we have no funding, zero funding.
How do you work when you have something like zero funding?
The budget for employment for women with disabilities is .002%.
For education it is .03%.
How do you take care or support the services?
I think I stop here because since the power is going on and off.
But if you want anything later we could always chat about that.
Thank you so much, Marcie, for having me.
>> Marcie: Thank you so much, Asha.
Your continued leadership is very powerful model for so many of us.
Your call certainly for funding, but as well for legal aid assistance and your call for all to write to the secretary general and the states parties.
We will follow up and provide everybody with information on how to do that.
Thank you very much.
I am now going to turn to yet another incredible ally.

Eric Rosenthal from Disability Rights International has been working tirelessly on the dangers people face in institutions for many, many years.
I will now turn to Eric to share with us.
Eric, go ahead.
>> Eric: Can you start my video, would that be possible?
>> Marcie: This is Marcie.
We can’t start your video.
Only you can do that.
>> Eric: There we go.
Thank you very much.
Thanks to the World Institute on Disability for organizing this very important event.
Learning a lot from hearing these different perspectives.
I am the founder and director of Disability Rights International.
We have worked for 25 years to bring the protections of international human rights law to protect people with disabilities.
We’re especially concerned about children and adults who are detained in institutions where they are subject to the most severe abuses known to humanity.
International human rights law not only protects their rights, but protects their rights to be part of society under the U.N. convention on the rights of people with disabilities.
The problems that we’ve been seeing here in the United States, very high death rates in nursing homes and other institutions, we are seeing growing rates on a grand, grand scale on the international level.
It’s not just elders.
It’s a broad array of people in many, many countries.
There are ten million children in institutions.
Two, three, four times that many.
We are concerned here in the United States about the incarceration of people based on race and other forms of oppression.
Well the institutions of the world are the dumping grounds for people based upon their disability.
Based on LGBT identification.
Women are subject to violence and trafficking.
And now we’ve spent years worrying about the dangers of institutionalization – in the COVID-19 epidemic, we are seeing very high death rates and great, great dangers.
One of the earlier speakers likened this to a house on fire.
That’s exactly how we see it.
And immediate action needs to be taken.
Not only to protect people inside these institutions, but to call into question why are they there in the first place.
To get them out of the facilities as soon as possible.
The U.N. high commissioner on human rights has adopted a very important resolution to governments and to international aid agencies around the world.
I’m going to quote from it.
It says, it calls on governments to “Discharge and release persons with disabilities from institutions and promptly ensure the provision of support in the community and fund those support services.”
And maybe even more important, it says that we need to “recover better by adopting and reinforcing deinstitutionalization strategies to close institutions and return people to the community.
Strengthening supports and services for people with disabilities and older persons.”
It’s a powerful mandate from the international community to end institutionalization, not wait for the end of the emergency, do it before the next wave.
My organization in alliance with activists throughout the world are putting on two important webinars next Thursday and Friday.
I’ll put the link in the chat on this Zoom.
We will have announcements on our website at DRIadvocacy.org.
The U.N. Special Rapporteur on disability, Catalina Devandas, will be speaking out on this.
The chair of the U.N. committee on the rights of persons with disabilities from Nigeria, Danlami Umaru Basharu will be speaking out on this on Thursday the 11th.
Very important.
Please join us.
On Friday we will be holding a webinar in Spanish that focuses on both the global challenges and the challenges to implementation in the Americas.
Amalia Gamio from Mexico who is a member of the CRPD committee will be speaking.
Along with Maria Soledad Cisternas who is the United Nations General Assembly’s special representative on accessibility for people with disabilities.
And historic first, the president of the inter-American commission on human rights, Joel Hernandez and Esmeralda Tritiño from Jamaica who is the Rapporteur on the rights of the child. This is an incredible combination of people in the mainstream human rights community and the disability rights community coming together to demand immediate action to get people out of institutions now.
And bring them to safety.
We must work together.
Please look at the DRIadvocacy.org website for information how to register, please join us.
Thank you very much.
>> Marcie: Thank you so much, Eric.
We applaud your ongoing powerful leadership and want to join you in any way we can to support the work that you’re doing to amplify next week’s events and on an ongoing basis, connect the folks who are committed to doing this work to you to make sure we are able to work in support of the efforts underway.
>> Eric: Thank you for your support.
Really appreciate it.
>> Marcie: Absolutely.
Lead on.
I see that Robert is back on.
But are we going to Rachel and then to Robert, Kat?
>>Kat: Correct, yes, we’ll hear form Rachel next.
>>Marcie: Very good.
I am now going to welcome Rachel Inegbedion with Special Needs Initiative for Growth from Nigeria.
Welcome Rachel.
And again I apologize if I didn’t quite get your name right.
Please help me to get it right next time.
>> Rachel: Can you hear me?
>> Kat: We can.
>> Rachel: Thank you.
Good afternoon, everybody.
My name is Rachel from Nigeria.
And I am the founder of Special Needs Initiative for Growth.
We provide empowerment tools and resources for people with special needs to get linked with jobs and entrepreneurship.
Today I’ll be talking about how we can support people and students with special needs, especially in developing countries during the pandemic era.
Now, inclusive education is part of the natural course of the sustainable development goals and in setting the education agenda, to protect the needs of children and discouraging any form discrimination, irrespective of their physical, intellectual and emotional challenges.
Secondly, in Africa it is estimated that a total of over 85 million people with disabilities.
A common story across developing countries, an accelerant of developmental disabilities varies from 0.4% to about 12.17% and then 20.4% have developmental impairments among other physical, sensory, and intellectual disability.
Now, given the circumstances surrounding the global pandemic, students with disabilities in developing countries like my country, Nigeria, have been deprived, excluded, and segregated from — and educational resources, as compared to their non disabled peers who have gained remote learning and other learning opportunities.
It is quite obvious that we need to do more in terms of providing students with disabilities with viable alternatives.
Before we talk about solutions I would like to highlight a few challenges that students with disabilities in developing countries experience, although some developing countries are making distance learning, video, television platforms for their kids to meet their needs.
But for physically challenged children, most of the accessibility settings available in online learning may not be good for them because they’re not designed specifically for special education. For example, graphs, charts, and mathematical models may not be correct for someone who is visually impaired.
Also video programs for people with hearing impairments, they may not be able to afford a sign language interpreter, and talk about the data or Internet connectivity – for some of the parents with special needs is really very expensive.
Now some of the parents in developing countries like Nigeria express great concern of not being able to have a proper work from home balance with their kids.
They get some professional caregiving but school provides special incentives for their children. They prefer to put their kids in school.
Not being in school for kids with special needs adds frustration for the child, and can even increase aggression, anxiety, and eventually depression — more over, school teachers in developing countries, some of them are experiencing difficulty in contacting families of the students with special needs.
Some of the parents don’t provide the right data, and teachers get so busy because of the complications and important — now I would like to highlight some of the key solutions.
This is a period where we need to see ourselves as interconnected.
There are no countries unaffected, developed and developing countries are still working towards sustainable development goals for inclusive education for all children, irrespective of disability. This pandemic has taught us to be our brother’s and sister’s keeper, helping push us to provide alternatives and supportive learning for children with special needs.
Even if you’re not a teacher, caregiver or special needs educator or even a parent, all we need to do is encourage our natural human-ness as we learn to develop small community problem solvers, where all members of the community are working to create adaptive learning opportunities with each student with disabilities for successful collaborations between home and school. Creating a network of small community-based disability practitioners who are the link between home and school to help with accessibility and disability-specific needs, as well as their particular skills also.
This is the best time for developing countries to formulate national policies on inclusive education.
The pandemic is unique, but for developing countries we should learn how to to affect positive and lasting therapeutic and academic changes for students and persons with special educational needs.
It should be intentional about helping students with disabilities to go along with their counterparts.
Now, to end this I want to it’s really important to see that a child with disabilities is a child first.
And we can focus on raising this child as part of a community.
Secondly, childhood is a critical time for development of a human being.
Whether we like it or not, it sets the foundation for your adulthood — it’s really key that we ensure to bring our children and others with disabilities into the community for stronger and resilient adults, which in turn will create a better future for this world that we live in.
Thank you so much for listening.
I’m open to questions.
>> Marcie: Thank you so much, Rachel.
Really appreciate all that you’re reporting on and want to make particular note to your comment about what an important opportunity we have before us right now.
We have a big decision ahead of us.
Do we go backwards?
Do we stay stuck where we are?
Or do we seize the moment and use all of the crisis around us to move forward and particularly with a commitment to children and adults with disabilities,
Who can in fact be very much a part of the change that needs to happen.
But it will require intentional effort.
So thank you very much, Rachel.
And I think hopefully we are ready for Robert. [beeping sound]
I think we need to mute Robert’s video — there we go.
Thank you.
Welcome, Robert.
We are so pleased that you were able to make your technology work.
Look forward to learning from what you have to tell us.
Please go ahead.
>> Robert: Yes, good afternoon.
Good afternoon to all.
I am happy to be here and I have my Ugandan interpreter here with me.
My Ugandan interpreter will speak with me, I believe, rather than the American interpreter or international sign interpreter.
>> Interpreter: I believe he needs the sound back on
>> Marcie: This is Marcie.
What we’ll do is mute Robert’s video.
Thank you.
>> Robert: Can you hear me everyone?
>> Marcie: This is Marcie.
We can —
>> Robert: I want to talk more about disability and the challenges connected to COVID and the lockdown —
[ loud echo ]
[ inaudible ]
>> Marcie: Robert?
I’m going to pause for a moment.
I believe your interpreter is getting picked up on the sound on your computer.
If you can mute your computer as well as muting here then let’s try that one more time and otherwise we will ask the international sign interpreter to step in.
>> Robert: [signs, no audio from Ugandan interpreter]
>> Marcie: Looks like we need to use the international sign interpreter.
>> Robert: Okay, hello.
Hello, everyone.
Very good.
I’m not sure if my interpreter is going to speak or…?
>> Marcie: This is Marcie.
We were getting a lot of feedback.
If your interpreter is on the same computer then we can mute — I’m sorry.
If your interpreter is not on the same computer then they need to mute their sound and speak through your computer.
>> Robert: Is it better now?
>> Marcie: No, I’m afraid it’s not.
Shall we have —
>> Robert: Is it good?
>> Marcie: No.
It’s only good when we hear the international sign interpreter, when your interpreter there’s echo or else we don’t hear your interpreter at all.
>> Robert: Okay then I’ll use the international sign interpreter then.
Well, thank you.
Thank you so much.
As I was saying, my name is Robert and as I said I work in inclusion and disability here in Uganda.
And I am focusing in particular on the lockdown and that issue in the lockdown.
I think my interpreters will work better my interpreter can speak it more clearly.
Now here in Uganda, we are on lockdown.
And the government, of course, has issued this, telling people all to stay in their homes.
And as a result people have no work and they stay in their homes.
But the people who have disabilities, for instance people who use sign language, are unaware of this.
They’re unable to access food and they’re also living out on the streets often.
And have no homes to stay in for the lockdown.
So their life, their electricity is also cut off.
And they go without food.
And there’s also a problem with getting food to people so that people are suffering from food insecurity.
So people are now without employment as they stay in their homes.
And as a result people are hungry, they are without food and so now I’m trying to take the lead on working with those people as many of them are asking me and reaching out to me with this need.
Asking for food in particular.
So that we can easily distribute the food to those people who need it.
And this is because the government is unaware of this, they do not communicate well with people who use sign language.
The government knows nothing about people with disabilities.
So this is an ongoing frustration.
People with disabilities — there’s no information for people with disabilities, no information on the television.
They have no access to this information.
So organizations of the DPOs have been contacted asking for help and we are responsible for providing this food as a result.
But it is my feeling that this responsibility truly belongs to the government and we cannot do this alone.
We are unable to do this alone.
We need to disseminate this information and there needs to be technology available to provide this information to people with disabilities.
This is in particular a problem for people who are Deaf and people who are Deaf-blind.
We have a large number of people who are in this situation, they depend on information through tactile sign language and they’re not receiving this information.
So we must go lobby the government to provide this and in particular to create a task force
so that we can increase the number of resources available for these people with disabilities.
And they can have increased representation, in particular, on that task force within the DPOs.
Because DPOs have no authority to make these changes.
We depend on support from the United States and from Europe to provide funding to our organizations.
But our government itself is not providing any funding or any support to our DPOs so we must lobby those governments to provide additional support so that we can then use the funding that they give to meet the needs of the people with disabilities.
And it’s so important that we do this, absolutely essential.
Thank you.
>> Marcie: Thank you so much, Robert, for your hard work, for your leadership and for this very important call for resources.
I would like for us all to focus a little bit more on resources.
The next poll addresses exactly that.
So let’s turn back to Kat and she’ll take us through our next opportunity to provide feedback.
>> Kat: Thank you so much, Marcie.
All right.
One moment please.
There we go.
I will be launching the next poll.
The next poll question is, what resources are most needed to support disability-led organizations?
You can select all that apply.
The options that we have listed are funding/monetary assistance,
Technical assistance for remote work operations,
Communication or office equipment for remote work,
Disability equipment, interpreters or other accessibility accommodations,
Personal care attendant services,
Personal protective equipment,
Legal assistance,
Training on any of the following: preparedness, capacity building, bias, rights,
Education and child care supports,
Or other: If we missed what your greatest need is please go ahead and put that in the chat box and we will collect them as well.
I can see that people are voting.
I will give them just a few minutes to do so.
At the moment it looks like funding is the top aid needed.
And training.
Sorry, disability equipment and accommodations is the next one.
The numbers are jumping.
Give people just couple more minutes.
There is still voting happening.
Okay, great.
I will end the polling.
And share the results.
Let’s see what people said.
Funding is by far 93% the top resource needed currently.
It does look like disability equipment, interpreters and accessibility accommodations is the second greatest need with training being the third.
That’s actually quite fascinating.
Again, if we didn’t list a resource need that you personally have, please do put it in the chat box. Wow.
Thoughts, Marcie?
>> Marcie: Thank you very much, Kat.
I’m also going to look at the additional, the others that are coming in on the chat box.
Those include volunteers, addressing systemic violence and mental health,
Our elected officials to be held accountable,
Assistive rehabilitative and adaptive technologies,
To meet the needs of various people with disabilities.
Accessible information and communication technology.
Person to person compassion is a big one, even in business.
Funding to support/provide stipends for caregivers, interpreter access.
Accessible information.
Humane leadership.
Really important identification of really important needs.
We also just heard, need home ventilator supplies, food deliveries meeting dietary needs.
Feel free to keep adding to that list.
And while people keep sharing that, we are going to turn to our next speaker.
Our next speaker is someone who I have been spending virtually every day with, thanks to the Partnership for Inclusive Disaster Strategies, we have a large group of people focusing on disability rights and needs of people with disabilities in the pandemic.
And one of our daily partners who has been with us is Kelly Israel from the
Autistic Self-Advocacy Network.Kelly, you can talk about what ASAN is working on.
>> Kelly: Can everybody hear me?
>> Marcie: Yes.
>> Kelly: First off I apologize for spamming you with my presence, Marcie, that is how the cookie crumbles.
I am — my name is Kelly Israel I am policy analyst at the autistic self-advocacy network.
ASAN is the United States-based 501(c)3 that is our nonprofit designation for those overseas.
A nonprofit advocacy organization created by and for autistic people ourselves.
In short, we are an all autistic, that is everybody who works at our organization is autistic, including me.
Disability rights organization, advocating for the self determination and civil rights of autistic people at the local, state, and national level in the U.S.
And so as you might expect, we have like all other disability rights organizations, become deeply committed to ensuring that the toll COVID-19 is taking on disabled lives is known.
And that the rights of people with disabilities during this horrific pandemic are respected.
So to that end, ASAN is creating a COVID-19 tracking tool.
That tracking tool records the number of confirmed COVID-19 infections and deaths in residents who live in congregate settings in the United States.
So by congregate settings, we mean locations where large numbers of primarily people with disabilities live.
Where they have very little choice and control.
So we’re thinking of settings that are very similar to the institutions that Eric Rosenthal described, although some would not describe themselves as such.
We’re talking nursing homes, psychiatric hospitals, some veterans’ homes in the United States, group homes, institutions that house mostly people with intellectual and developmental disabilities, some countries call these individual people with learning disabilities, which means something totally different in the U.S. but terminology aside, and assistive living facilities that help people with Alzheimer’s disease.
We’re talking places with large numbers of disabled people clustered together and isolated from the broader community.
So one of our reasons for tracking specifically congregate settings was to try to create a means of determining and sharing publicly the incalculable death toll for people with disabilities during this pandemic.
We’re using congregate settings because residents of these places are most likely members of our community.
Because so many of us live there, deprived of control of our own lives, and as Eric pointed out, in deplorable conditions often enough.
Another way was to try to show the damage that congregate settings wreck on the health of people with disabilities due to their design.
Congregate settings cluster people with high risk of complications from a severe illness together and restrict their movement.
These institutions are hot beds of COVID-19 activity.
There some are states where they make up over 70% of the cases or the death toll from COVID-19.
So in the United States where we’re running this tracker, we collect three kinds of data.
One, individual, reliable news articles from media outlets online.
Either from local news channels and websites, statewide websites or nationally prominent outlets like CNN and NBC national.
These articles list the number of resident infections and sometimes deaths in a specific congregate setting.
Like there could be an article from a local newspaper which describes the number of infections and deaths that have occurred at specific local nursing home in Missouri or something.
For example.
And that goes into the tracker.
Then we’ve got reports and news articles that give the data for specific entire counties within a state.
So many of you probably already know this but the states in the United States are divided into individual counties.
And some news articles give the numbers for a specific county.
Like say Prince George’s county in Maryland, for example.
We include that data in the tracker, too.
The third kind of data we’ve added are reports and news articles which provide some of the numbers for an entire state, such as data released by state health agencies.
So, for instance, Maryland’s Department of Health and Human Services or something.
Data released from these agencies on COVID-19 infections and deaths in long-term care facilities, which are usually nursing homes and psychiatric institutions exclusively,
But there’s a rule in the United States from an agency called CMS, which says that each state has to release data on how many COVID-19 infections and deaths occur in long-term care facilities.
As far as I know, no state has interpreted this requirement with any consistently with any of the others. Some of them interpret it to mean only nursing homes.
Some of them interpret it to mean everything from group homes to psychiatric hospitals.
But the short version is that the data is not comprehensive and that’s why we still exist.
It doesn’t cover all of the settings we’re thinking about.
All of these isolated settings where people with disabilities live and are taken away from the broader community.
So, of these three kinds of data we collect we input all this data into an Excel spreadsheet, which uses a formula to sort of add it all together and get accurate numbers for the state, for the counties and for each setting.
So the data isn’t perfect.
Sometimes we don’t have enough accurate information or the data blends numbers from residents and staff together.
We only want data on the number of infections and deaths for residents.
Not the data for staff.
Because these aren’t people with disabilities.
We’re also using the highest available numbers.
Because we believe that COVID-19 cases in these congregate settings are being undercounted and underreported.
But we’re doing our best to keep it as accurate as possible.
So if with this information out there by virtue of collecting it, disability rights advocates in the United States can utilize to make arguments for community-based services for people with disabilities and to try to evaluate the damage that’s been done to our community by these places and by COVID-19.
We do plan on keeping ourselves involved in the disability rights and disaster space beyond COVID-19.
And beyond this project and the disaster we’re going through as an international, national community right now.
I was already a member of a local, that is District of Columbia, city that I live in, advisory committee working on disaster preparedness before the pandemic struck.
And I plan to ramp up my involvement in disability rights disaster preparedness task forces throughout the movement.
We want to make sure that the voices of actual people with intellectual and developmental disabilities are heard.
So that our rights and needs when the worst comes to pass are respected and understood.
The main thing we were in need of at this stage of our project – we do have a grant to do this – are volunteers.
At the moment the COVID-19 tracker is being run by three people and one of them is me.
Never a good idea.
But, no, in all seriousness, I’m one person who is entering most of the data and I rarely have enough time to do it all in my day.
We’ve created an online form for people to submit information to the tracker, which is mostly designed for individual settings but we’re trying to get it set up so that state by state it can be included.
Any help that people can give just bringing new data to our attention and inputting new data into the tracker is greatly appreciated.
We need all the help we can get to get this thing in order.
Thanks so much for giving me the floor for this three to five minutes.
I was happy to share.
And if you see any individual settings or data that should be drawn to our attention, please submit it to the form.
I would be happy to input into it the tracker.
>> Marcie: Thank you so much, Kelly.
And I was especially pleased to hear that you are going to continue to work on disability and disaster.
Unfortunately, before the global pandemic, there were not a lot of folks working on what happens before, during and after disasters for people with disabilities.
It’s wonderful that there has been much more interest during the pandemic.
We are extremely hopeful that people will stay involved with the leadership of organizations like the autistic self advocacy network, and your persistence, Kelly, and persistence of your team.
I have great hope that we’ll make very significant progress in inclusion and leadership of people with intellectual, developmental disabilities.
And our siblings who are really counting on us to continue to elevate around institutionalization and disasters.
Thank you very much.
I have several people in the queue.
So we’re going to be mindful of time.
I think all of the folks who had requested in advance have had the opportunity to speak.
And now we’re excited to have some additional folks so I think first we’re going to turn to an old and fabulous disability — you’re not old.
Old friend and fabulous disability rights leader, Alan Holdsworth.
Alan, please go ahead.
There you are.
>> Alan: Hi.
I’m going to be very, very short.
We are planning a worldwide event in December around the United Nations international day.
We’ve already got Australia, Brazil, America, Europe, all together.
It’s going to be called Live Aid.
It’s going to be mixture of disability art, disability information, disability protests.
It’s going to be 24 hour event, going all the way around the world and going to put in the chat line the link to it.
If anyone would like to get involved with that.
There is a Facebook group, request to be joined.
We have had a meeting to talk about this afterwards.
It’s something positive I can put out there to get people around the world to talk about what is happening in their country.
Thank you very much.
>> Marcie: Thanks so much, Alan.
Sounds like a wonderful opportunity and we very much encourage everyone to get involved and you can certainly count us in.
Next I am going to turn to Lisa Seeman who has joined us and would like to speak.
Go ahead, Lisa.
>> Lisa: Thank you so much,
Marcie and Kat.
So, I work for the university, but more importantly I work on the task force on accessibility for people with learning and cognitive disabilities inside WCAG, who make the international standards for the web accessible content.
So we’ve been making a big document on what to do to accommodate people with learning and cognitive disabilities.
And then COVID came along and we became very well aware that this large, comprehensive document that takes you through the whole life cycle of making content, was too long.
I had a look for some grants, but honestly as a slightly slow reader they were beyond me.
We just did it.
We made a few additional one pagers, ten tips on what to do to make content more usable for people with COVID-19 and disabilities.
Then a short page of four getting started points, if you like.
So if you have ten minutes or if you have an hour, or if you have three days to start making content, what do you have to do?
Because what was happening, or at least what was happening to me, is if I was trying to get information, it was hard to get that information – it would be on the web, then a phone number.
And the phone number takes me to one of these awful menu systems if you don’t have good communication skills and good short-term memory you can’t manage the combination of skills required to get to help.
So you can’t get the help.
Then this is people living alone have less contact than they used to.
So this is for people who aren’t in the institutions but at home they can normally manage but now they don’t have their normal help, support system coming in on a regular basis.
Or at all.
And then where do they find out, I was trying to find out am I a vulnerable person.
I couldn’t get that information from anyone.
So that kind of thing is more critical now, it’s always important.
But now with lockdowns and stuff it’s even more important that people can access this information and get the help they need.
Independently.
That is the key word.
So we’ve made this additional guidance really short, pointed advice.
That even if you just have ten minutes you could look at and pick something up.
Hopefully that will help people get the information they need.
I think what we’d really like is for it to get out to the people writing the content, that they should be aware that this content exists to support them, support us.
I’m also extremely happy for any comments, what should be changed both for guidance and the tips and getting started.
If that’s okay I’ll put it in the chat.
If anyone can to disseminate it, send it out that would be lovely.
Very appreciated.
If anyone wants to contribute, always happy, always need more people.
>> Marcie: Thank you so much, Lisa.
Great and important work.
We’ll be sure to share it around.
We always appreciate the work that comes from the W3-ICT and work that is coming out around communication accessibility.
We have a comment from Facebook.
Kat, would you like to share that comment?
>> Kat: Absolutely.
So I have one here that says, listening from the U.K.
I feel that the world has not listened to or recognized the positive contributions to the world.
People in the U.S. are not being supported and helped with this COVID-19.
Disability is being used as an instrument to say their life is not important.
And I have one more.
We, the North Hampshire British polio fellowship have been here in the global virus pandemic epidemic before with polio in the 1920s to the 1950s.
With many of us being placed in full body length ventilators or iron lungs.
Many of us survived and are still living today.
And thanks to the development of a polio vaccine in the ’50s, polio is not around today.
However there are in recent years many parents who are refusing to vaccinate their children of polio or measles and thus there is fear of old pandemics and epidemics coming back around the corner, in addition to COVID.
Hopefully a vaccine against COVID-19 is developed and it will be accepted worldwide that vaccinations are really important.
Thank you.
Those are some comments we had on Facebook.
>> Marcie: Thank you, Kat.
I have one other from Zan Thornton.
How do we disabled become valued?
Bill A. has ALS so when his awful nursing facility got COVID, his family signed a DNR as soon as he went to the emergency room.
Luckily his friends, advocates, the partnership for inclusive disaster strategy, WID and friends got DNR not implemented.
He’s alive, off vent, and getting a local center for independent living and friends to transition him to a better place.
The question is, he lived because of advocacy, but how many of us will die because of the devaluation of our lives?
What can we do?
Of course many things, but your suggestions, please, including nonviolent protests.
>> Marcie: Thank you.
Your message, Zan, is a really important one, bringing folks together through this forum, continuing our active participation led by organizations like the partnership for inclusive disaster strategies, ONG Inclusiva, and those of us who are focusing on disability rights and disasters.
These are all the important things that we can do, and we invite our interested partners from business and industry,
Our corporate and foundation funders who have come to us and asked us how they can be more targeted in how they can support disability-led organizations in preparing for, responding to and recovering from disasters.
We’ve heard what you all have said.
We have heard what they have said.
And we have a clear mandate to move forward with the Global Alliance for Disaster Resource Acceleration.
We will be rolling out the alliance on July 9th.
We will invite all of you to be with us as we move from words into action.
And more information will be coming.
We’re very excited to have so many people from so many places joining together and we follow your lead when you tell us what is important and when you tell us what it is that is needed.
So, as we wrap up, I want to turn back to Kat who will be providing us with our closing poll.
This one will be shared now and then the results will be shared in our follow up.
Kat, please share that final poll.
>> Kat: Yeah, thank you, Marcie.
I’m launching it right this moment.
The question we have as our last poll is,
Would you like to participate in a Twitter town hall, continuing this discussion?
We have quite a bit of folks voting. 37, 47.
We have 67% yes.
33% no.
But we’re still getting some votes in.
>> Marcie: This is a really important question, because
we want to know whether Twitter is a mechanism, a technology tool that folks want us to incorporate.
In addition to these kinds of discussions.
We’ll also be asking later on as a follow up about other technological strategies for engaging discussion.
I guess we are going to share the final results.
>> Kat: We sure did. We’re at 63% yes.
37% no.
So it doesn’t look like Twitter is for everybody.
But the majority would be very interested in a Twitter town hall.
>> Marcie: And with that, I want to once again thank all of you for making the time and making the effort to be with us.
We are very appreciative of all that you’re doing and we look forward to having you all join us on July 9th.
And in the work that we’re doing, before, during and after disasters as we move forward.
Thank you to each of you and please keep letting us know what it’s going to take for us to collectively do a better job in all aspects of our inclusion.
Thank you very much.
Be safe and well. See you soon.

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Solidarity Statement with Protestors Demanding Police Accountability

For Immediate Release: June 4, 2020

Contact: Heather Duncan, heather@wid.org

The World Institute on Disability stands in solidarity with protestors participating in actions around the world to demand police accountability for the police murders of George Floyd, Tony McDade, Breonna Taylor, Ahmaud Arbery, Dreasjon Reed, and far too many other Black people. Our solidarity extends to our global family, many of whom have joined in protest over the murder of George Floyd, while remembering Adama Traore and David Dungay Jr, who also died as a result of police violence.

An estimated one third to one half of all victims of US police murders are people with disabilities, and incarcerated people are at least 3 times as likely to report having a disability than the nonincarcerated population[1]. Due to the racism and ableism thoroughly embedded in the justice system, this disproportionate impact is felt most strongly by Black people with disabilities. For many, the violence and brutality transcend ethnic, cultural and social differences.

WID joins in the call for an immediate end to police violence. In addition, due to the cruel injustices faced by people with disabilities, WID also calls for redirecting the funding of mass incarceration and institutionalization.  Funding used for programs that allow and perpetuate violence, abuse and neglect must be immediately redirected to resources, services and programs needed for people to live in freedom at home and in their community.

WID is one of the world’s first disability rights organizations, founded and continually led by people with disabilities. We acknowledge and accept accountability for our part in perpetuating the contributions of white disabled people in the systemic and interpersonal racism faced by disabled Black people, and that includes racism within the disability rights movement.

Rights, no matter how hard-won, mean very little under a system that regularly disregards the rights of Black and brown people. The words of W.E.B. DuBois ring truer than ever, 130 years after he first spoke them, “A system cannot fail those it was never meant to protect “.

We are all inhabitants of the same planet, none of us any more or less valuable than the others, and none of us above reproach.  All of humanity is at a crossroads. Black lives are at stake, and being lost, through our inaction.

The World Institute on Disability, our Board and Staff are committed to actions that bring the murder of Black people to an immediate end. We are committed to ending our own   institutionalized racism and we vow to redouble and expand our work towards disrupting exclusion and accelerating social justice.

“History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again.” – Maya Angelou

Link to download full statement (Accessible PDF)


[1] Rebecca Vallas, “Disabled Behind Bars: The Mass Incarceration of People With Disabilities in America’s Jails and Prisons”, Center for American Progress, July 2016. https://cdn.americanprogress.org/wp-content/uploads/2016/07/18000151/2CriminalJusticeDisability-report.pdf.


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Text overlay: Global Disability and Disaster Town Hall. 3 ears, one with a hearing aid and one with Deaf symbol, surrounded by yellow dotted line circle. Communication symbols (speech bubbles, signing hands, and communication board) surround the circle.

Global Disability + Disaster Town Hall 5.7.2020 – Transcript

> Kat: I think it’s time that we can get started.
I will start us off.
I’m just waiting for — first let me tell you this is — this town hall will be recorded.
It will also be streamed live on Facebook I’m just waiting a few minutes while this is transmitted to Facebook.
So I think it’s time to begin.
Hello and welcome to WID’s global disability and disaster town hall everyone.
I’m Kat I’m WID’s director of operations.
As I said a moment ago I’d like to announce that we are recording this meeting.
It is also being streamed live on Facebook on WID’s Facebook page.
Which is Facebook.com/WorldInstituteonDisability
I can go ahead and cut and paste that link in to the chat right now in case anyone is interested.
For starters, as some of you have noticed everybody has been muted.
I’m going to talk a little bit about how today will go.
After we present our opening remarks to frame the disaster landscape for people with disabilities and disability-led organizations, in a very short while we will open up the webinar to those of you who want to share your experience.
If you would like to speak, you can submit a request via the Zoom Q&A or chat features which we are monitoring.
Simply say, I’d like to speak to be added to the queue.
We will also be monitoring the Facebook live feed and can answer questions or relay short messages on people’s behalf.
If you are selected to speak, please begin by saying your name, where you’re from and the name of your organization.
We want to try and learn from as many people as possible, so please try to keep your remarks to two to three minutes to outline the issues you’re raising and potential solutions.
We want to learn what disability led organizations need to continue their operations and meet the needs of people with disabilities in this COVID-19 pandemic,
In other disasters you’ve experienced, and other disasters sure to come.
We also want to hear about your experiences in seeking and obtaining disaster relief funding to prepare for disasters and continue your operations during disasters.
And your involvement in the community recovery.
We understand — we want to understand what is working and what is not working.
Also, if you are selected, please be sure to unmute yourself with star-6 or clicking on the microphone icon in the Zoom toolbar, speak loudly and slowly for the captioner, the interpreters and all of our participants.
We would love for speakers to open their video feed, which is the camera icon on the Zoom toolbar.
However, if you do, you might find that it reduces the quality of your Internet connection.
When it’s time to speak, I will change your status from attendee to panelist.
When this happens, there will be a brief interruption in your connection, don’t worry it’s only two or three second transmission then you’ll be back.
This can be surprising so we wanted to let you know about it in advance.
When you are a panelist, you will then be able to share your video and tell your story.
Additionally, we will have three survey poll questions that we’ll be asking all of you to answer.
When the poll is launched you will receive a notification on your device that will include the question and multiple choice answers.
This is an accessible process.
And I will also be reading the questions and answers for you to choose from out loud as it is captioned and signed.
Everyone will have time to make a selection and when all have answered we will share the results.
You can add your responses to the poll in the chat if the poll isn’t working for you.
Lastly, we do hope you will share and tweet abut this WID town hall listening session and very important issues that will all raise today.
We would love it if you use the #WIDTownHallC19 on various social media platforms.
Again that is #WIDTownHallC19.
I think that’s everything to get us started.
I’ll turn it over to Marcie Roth our executive director who will kick us off.
>> Marcie: Hi, everybody.
Thank you very much, Kat.
Thanks to everybody who is joining us here.
I’m Marcie Roth I am the executive director and chief executive officer of the World Institute on Disability.
WID is a fabulous organization that was launched back in 1983 by Judy Heumann, Ed Roberts and Joan Leon.
An organization that was founded by people with disabilities and intentionally designed to be one of the first global disability rights organizations led by and as we say, by, for and about people with disabilities.
And we are extremely proud of the heritage and legacy of the organization and we’re especially grateful to have the opportunity to bring so many people together today.
We have folks joining us from over 20 countries.
And the intention of the discussion today, which we expect will be the first of many is to talk about the experiences of organizations led by people with disabilities.
In some places they’re called disability-led organizations in some places they’re called disabled persons organizations and in other places, organizations of persons with disabilities.
I will typically be using the term, disability-led organizations.
But you might also hear people referring to DPOs and OPDs.
It all really makes means very same thing.
Organizations that are by, for and about people with disabilities.
And we are focusing specifically on the circumstances that disability-led organizations and people with disabilities experience before, during and after disasters.
And most particularly we’re going to be focusing on the experiences that people are having in the midst of this horrible and devastating pandemic.
We are well aware that people with disabilities are disproportionately impacted by this virus.
Although frequently it is referred to impacting older people, people who are described as being the most vulnerable and people with underlying conditions,
We know that most of the time we’re referring to people with disabilities when we use those euphemisms.
I am going to pause for a moment because I understand that Facebook live is not working.
I’m just going to hold for a minute and see if we are able to get that fixed.
Do we have any updates on Facebook live.
>> Kat: Hi, Marcie.
This is the third time I have stopped the stream and started it again.
I get all the way to where it is about to stream then I have sort of a black window that is working so I’m not sure what is happening.
I’m keeping an eye on it and I am stopping the live stream and starting again.
>> Marcie: Maybe other folks can take a look.
So, what I don’t want to do is spend all my time talking.
Really we’re here to listen.
We want to understand what’s happening for disability-led organizations and the operations that your organizations are able to continue to provide.
We’re very concerned about what’s happening for people with disabilities for whom the current circumstances have had a devastating impact on — every aspect of their lives.
And so we’re also particularly interested in hearing about the experiences that disabled persons organizations are having in accessing rapid response funding and the experiences that you’re having in being able to participate in the larger humanitarian relief initiatives.
So, I am joined by some fabulous colleagues that I have worked with for many years.
We’re going to begin by hearing about their experiences.
We are joined by folks who run organizations, the only two organizations in the world that focus exclusively on the rights of people with disabilities before, during and after disasters,  as their entire focus. And one of the organizations headquartered in Peniflor, Chile  is called ONG Inclusiva.
The other organization who I know quite intimately, the partnership for inclusive disaster strategies.
That organization is housed in Philadelphia, Pennsylvania.
And the coexecutive directors are German Parodi and Shaylin Sluzalis.
Let’s first turn to Kat before we have either of them speak.
Kat is going to lead us through a poll.
This will be our first poll of the day.
Once we have taken the poll then we’re going to hear from German, Shaylin and Carlos.
Kat, over to you.
Kat, you’re muted.
>> Kat: Thank you so much.
I’m excited to lead us off.
I will launch it right now.
Now I will read the question.
Do you believe disability-led organizations are left out of disaster relief funding from government, corporations and foundations?
There are three options for answers.
Yes, definitely.
Sometimes.
And no.
I can see results coming in, very exciting we’ll just wait a moment while people are voting.
All right.
Look at that.
The voting has slowed down.
Marcie, it does look like the majority of folks have answered.
I will go ahead end the poll and share the results with everybody.
>> Marcie: Go ahead.
>> Kat: Yeah!
So it looks like most people voted yes, definitely at 64%.
37% said sometimes.
And zero said no.
I think this information is incredibly telling.
I’ll throw it back to you, Marcie.
>> Marcie: Thank you, and, wow.
That is very telling.
There we go.
Extremely helpful.
That as Kat says should help us moving forward to have an understanding that in a group of close to 200 people no one found that the current funding process for disability-led organizations was adequate.
Now we’re going to, as I had promised to hear from Carlos Kaiser from ONG Inclusiva.
Carlos is a dear friend and colleague who has been making his mark globally for many, many years.
Carlos I am going to turn it over to you.
We will be interested to hear your experience.
>> Thanks, Marcie.
I would like to say that it’s privilege to speak to people here also to say that with Marcie we have been working, also great experience I have with German and Shaylin people whose actions.
We need this — to work, not just to speak.
Our experience in ONG Inclusiva is that we are working in multiple levels from, for instance, we are working with local government, Chile, because they are — how can I say it, they work faster than the country government.
They are faster than the government.
Because they are in contact with people, they know what is happening here.
So we are working with them in protocols to deliver food, humanitarian help, also for people to get access to all the things they need to face the pandemic.
We are not the ones giving them boxes, humanitarian boxes to give to people.
We are just saying the way they can work, we are funding resources together.
We have some little funding from private sectors.
We have some funding from volunteers and ways for people, regular people, you know.
We’re not talking about millionaires, we’re just talking about people that lead their communities and they want to share.
We are working also with central government in Chile.
We provide them a lot of information, classify data.
We produce interviews with people.
We have made exercises to work with community-based organization on people with disabilities.
They would say to our authorities what they need.
We have been having some problems with this because sometimes government don’t want to listen to the things that we are saying.
But we have some help from some ministers that are supporting us,
The secretary of the state.
That we’re here in Chile so the things that we are looking for real solutions, not just — that’s problem that we had in facing with the government, sometimes they are like, how can I say, high level commissions, a lot of documents, we provide them with those things.
But we provide them for them to use.
Then we have been working with different governments apart from the Chilean government.
We reach an agreement with Panama government, with Ecuador.
The thing is that we are just looking for action and they are doing the same.
We improve their materials.
We were just saying about disability.
The third level we’re working with the United Nations thanks also to Marcie, Shaylin and German.
We send letters to the secretary general of the United Nations and they are using some of our ideas there.
Also we are working with the pan-American health organization.
We are providing different services, we are working with Peru, with Chile, different universities because we’re providing psychological help because many people as you know we’re facing psychological issues.
I’m going to finish my intervention because I believe I took more than three minutes, would save tremendous time.
People that are really working for a better world.
I’ll finish saying working on indicators because we need to make them accountable for things they are doing for things they are not.
Thanks for this opportunity.
Marcie, you are doing a tremendous job for the world.
Thanks for inviting me to be here.
>> Marcie: Thank you very much, Carlos.
This is Marcie speaking.
We are a mighty team and we have much work ahead of us but I’m happy to say that we have so many people joining us I think our work may be a little less lonely.
We have a lot of folks who share our passion and are ready to work together to disrupt exclusion.
I’m now going to turn to two people who I have worked extremely closely with for a number of years and who I remember early on took a real interest in these issues and have never looked back.
German and Shaylin, I turn it over to you, the partnership for inclusive disaster strategies.
>> This is Shaylin, hello, thank you for having us.
Alongside me is German we are co-executive directors of the partnership for inclusive disaster strategies.
The partnership was founded in 2016 by — our very own Marcie Roth and the partnership is the only United States based disability-led nonprofit organization with —
[ dog barking ]
Apologies.
Our dog.
>> Marcie: I’m sure that Shaylin will be back in a moment.
>> This is Shaylin, so sorry.
Sorry about that.
As I was saying the partnership is the only United States based disability led nonprofit with the mission of getting people access to emergency and disaster programs and services before, during, and after disasters. This includes people with disabilities,
Older adults, people with access and functional needs.
We’re able to achieve our mission through our unwavering support for local disability organizations, community engagement organizing and leadership development.
Advocacy and public policy, training and technical assistance.
Research and education and disability led disaster response to community resilience.
As Marcie was alluding to, when German and I got involved with this area of disability rights was through us to Puerto Rico after hurricane Maria.
Being one of the first disability led disaster response first responders.
We are the nation’s experts on disability rights, accessibility and inclusion throughout all phases of disaster operations and emergencies, our members represent disability and we have affiliates in every congressional district and virtually every U.S. community.
We are the boots and wheels on the ground response, community resilience and capacity builders and disability rights experts before, during and after disasters.
>> This is German.
Every disaster becomes a disaster due to the lack of all of our governments including us in the planning process ahead of time.
Again and again this is result, and now worldwide we can safely say that 60% of COVID deaths are coming from long term congregate settings,
Across the states and across the globe.
The reason for this is because people with disabilities are not included in preparation or emergency management, public health emergency planning and truly — have been for us not with us.
Strongly on the legacy of our founders across generations nothing about us without us, is our primary focus.
In the United States we have been having daily calls since February 28.
We have done calls to action to the White House task force, we have made numerous attempts to reach the federal government to little avail.
Individuals in the CDC, HHS, and 14 of FEMA, actually, have come and given their personal — little voice.
Congress again it seems to be focusing on workers and very little on persons with disabilities.
This can be reflected across the government.
We will continue to expand on a resource list that you can find on our website.
Disasterstrategies.org and reach out to us on that website to get more involved.
I have to say, the nursing home industry, the status quo powers that be are the ones putting in the money to the decision makers and DPOs, we’re spending time and energy on operations to achieve the best we can for our people.
But we need more.
We need those with the deep pockets to look at the good work coming out of organizations like WID, the partnership and so many more to please expand our capacity so we can do more.
Thank you WID for putting this on today.
>> Marcie: Thank you very much, German, thank you very much, Shaylin I think the work that you all are doing and your singular focus on disability and disaster really keeps us all moving in the same direction and World Institute on Disability is really fortunate to have both of your organizations working so hard to try to change things.
We’re glad to be working together moving forward.
In a few minutes we are going to open up to participants who would be interested in speaking about your experiences as a disability-led organization.
But before we do that, I think we are ready for our second poll.
I’m going to turn to Kat.
>> Kat: Hi, thanks, Marcie.
All right.
Poll number two.
Let’s get to it.
This poll reads, during this COVID-19 pandemic, do disability-led organizations have what they need to serve their local communities.
The answers are the same as last time.
Yes, definitely.
Sometimes.
And no.
I can see participants answering right now.
I’ll give everyone a few minutes or a minute.
a few more.
All right.
Marcie, looks like we have a majority.
Shall I share the poll?
>> Marcie: That would be great, Kat, thank you, please do.
>> Kat: Wonderful.
I’m going to end polling, last chance.
Here we go.
Results are as follows.
2% said, yes, definitely.
47% said, sometimes.
And 51% said no.
Wow.
Again, incredibly good information to have and alarming results.
>> Marcie: We’re going to have to really think about those outcomes.
Super, super helpful.
Now we’re going to open up to the folks who have joined the town hall.
I know that we have our first speaker all ready to go.
I think we have a number of speakers who have asked to be included.
For those of you who haven’t yet requested to speak, please do so either in the Q&A or in the chat.
Unfortunately Facebook is misbehaving so we’re not successfully streaming to Facebook.
However we are recording as you all know.
So the folks who were hoping to join us on Facebook will be able to view the town hall later on and as soon as we have the captioning cleaned up and applied with the right timing, we’ll be posting this on YouTube.
We’re going to first turn to Dulal and if we can cue Dulal to speak that would be great.
>> Dulal: Hi, Marcie.
Thank you very much for giving me the opportunity to participate in this very important, you know, meeting.
And timely, I appreciate for that.
My name is Dulal I am the executive director of a national disabled peoples organization, in Bangladesh.
Disability people national organization.
We have 2,000 in our organization and about 60% of the country we cover by this organization.
To promote the rights and development of disabled people of Bangladesh.
We have historical engagement from international planning.
In regards of the COVID-19 and this is a big, I want to say that the — for our people with disabilities, those is developed by last 25 years time especially they are employment, those who are engaged in the like grocery shop, like this type of business.
And established family, have children.
In our organization, going to 1,000 families that live by disabled people income, most of their income is now — because they are based on the daily income that — this is a big disaster, I want to say that.
So they also — affect not only their business, affects also some of the disabled people, their properties, some of the disabled leaders tell me that their children is losing the — because of the lack of the food.
And that is a need.
And something that they don’t have in this time.
So that is, I think, what I see that is a big problem for them because — and also due to the types of disability, our condition.
I myself is a wheelchair user.
The — is continuing in country.
We are not to reach everyone, sometimes it is very difficult to participate and to collect the relief items.
It’s very challenging and for wheelchair, for blind person, for hearing disability, they are not able to know.
The information is not available for them.
And so I think is a big gap, we are the few.
We have advised to ensure that we should be key partner of the development partners.
So most of the development including United Nations is to know our partnership in their signing agreement with the other participants including the government.
So that is I see a big problem that United Nations, the articles are not implemented properly.
So that is one of the gaps I think is if that implemented so DPOs and organizations like you and organizations like us have the access to build our capacity to be extended,
So that we are able to address these types of crisis.
Development and many — most of the people for nondisabled people and organizations is — humanitarian organizations in my country what I see.
Even organization, they also not — I don’t see the inaction, especially in this crisis time.
What I see that we need so much to address the income, daily income level, we need to reassert disabled people in the country and so that disabled people are able to restart their business, to survive.
That is what I see is a need.
As you understand that it is also very important for not just advocates.
We act as a development organization, human rights organization,
Holistic development organization.
So that I think I want to say that is very important to be partners with any development partner in this regard in future and also — we have plan to organize the national event where all stakeholders, all policy facilities will participate in development, partner.
In this year we have plan to organize that event to make sure the COVID-19 policy and action are inclusive and ensure that disabled people are included in the action.
>> Marcie: Thank you.
>> Dulal: Thank you very much for your time and giving me this time to talk here.
>> Marcie: Absolutely.
>> Dulal: It is a huge issue, actually, huge issue.
But I appreciate for you organizing this big meeting, thank you very much, Marcie.
>> Marcie: Thank you.
This is the beginning of the discussion.
Certainly not the end of it.
We’ll continue to work together to try and shift that paradigm, absolutely.
Kat, do we have our next speaker?
>> Kat: We sure do, Marcie.
We have Alec and Alec is from autistic reality.
Alec, go ahead.
>> Marcie: Awesome, thanks.
Hi, Alec.
>> Alec: Thank you.
I want to thank all of you.
I want to thank you Marcie for what your wonderful organization does.
I want to give a shout out to my friend Judy Heuman for helping start this organization.
Also before I get started a big fat thanks to the partnership for inclusive disaster strategies.
I admit that stimulus money was not just selfishly spent.
I gave a sizable donation to them.
I would like to encourage everyone to please do that.
I have prepared remarks because I know that this is a big day.
I’m the director of autistic reality, an
Advocacy organization based well, wherever I am.
I technically live in Tacoma park, Maryland.
A lot of my work is in D.C. and elsewhere.
In addition to disability and human rights, I actually do a lot of pop culture criticism.
And I make a case to the world for disability inclusion in the arts and I have a podcast.
And a YouTube channel where I interview celebrities and I always ask them about disability inclusion in the arts.
You can find me online at nothingaboutuswithoutus.net or autisticreality is my e-mail.
On Twitter I am @autisticreality.
To get to the matter I’m going to try to make this as brief as possible.
I’ve been getting a bit of work done to further disability cause during this quarantine.
I am a member of the national council on independent living education committee.
We had a few agenda items.
In one we wanted to ensure that the secretary of education does not ask congress for any waivers to the section 504.
In very good news she has not asked for those waivers.
There are two waivers for the individuals with disability education act which she has asked for.
Here they are.
One waiver she asked for, a timeline of evaluations for young children who are preparing for transition from part C which means, early intervention to birth to three years of age,
To part B, which is preschool through high school.
This waiver would allow the young children to stay in part C that is early intervention, birth to three years of age,
Until the required face to face evaluation can be conducted once the epidemic is over or once we can manage this.
Second waiver or recommendation that she made addressed personnel — personnel development scholarships, the waiver would allow deferral of the work or repayment requirements for service obligations interrupted by the COVID-19 emergency.
Those are the only two areas that Department of Education has asked congress for.
Considering that this administration’s education department has systematically tried to dismantle public education, this is actually very good news.
Another thing the education committee spoke about is free and appropriate public education.
The U.S. government guaranteed that students with disabilities get a free open public education.
A number of suggestions were floated but I had one in particular.
I suggested that schools and districts keep a staff of counselors, case managers and special education professionals on hand as essential employees during this crisis.
A number of families with a disabled child or with disabled parents, I might add, do not have the wherewithal to a free and appropriate public education on their own without schools.
It is vital that they have case workers to rely upon during this time.
Disability rights are human rights are civil rights.
And that means that the respected professionals should be considered as essential employees.
Another matter that I’m quite personally passionate about is that making sure that the students and the adults have personal encounters to rely upon.
Many of us including people like me with autism, bipolar and other such disabilities may slip into a very dangerous depression if we do not have regular human interaction.
I understand the physical health risk but for many of us with intellectual and developmental disabilities, mental health risks are often just as great.
Now I have one big paragraph left and I’m going to get through this as quickly as possible, I don’t want to waste your time.
I have also been very involved in advocacy for grocery shopping services.
I was quoted extensively in an article for the Washington city paper.
Individuals with mobility impairments and immunodeficiency are not the only people with trouble getting to the store.
I have at least 15 disabilities and cannot drive.
In addition interpersonal interactions are often tough for me and are definitely tougher for many other people with autism and other developmental disabilities.
This greatly impacts our shopping.
Ever since this crisis started online shopping from platforms such as Instacart has been nearly impossible.
In the article I suggested such platforms allow options to recognize one’s disability giving us a great deal of priority in shopping.
In addition I am aware that Instacart and other platforms are finally allowing new options for added delivery.
For example, Instacart normally has you schedule a delivery which since this crisis started could be over a week in advance.
Now, however, they are allowing you the soonest available time slot which is especially good for the inevitable prescheduled slots that clear up.
The food stamp amount has been temporarily more than doubled from the baseline for March and April.
However, people on food stamps, cannot currently pay for online grocery orders with food stamps.
Advocacy organizations are working with many state governments to override that as that portion of food stamp legislation is a state issue not often federal.
Much of this legislation currently precludes people from using their allotment on online grocery orders.
And once again, you can find me on Facebook.com/autisticreality.
You can find me at nothingaboutuswithoutus.com
Or autisticreality@nothingwithoutusaboutus.com.
Twitter at autistic reality.
Many thanks for having me here and I don’t want to tie up the line for too much longer.
Thank you.
>> Marcie: Thank you very much, Alec.
Very much appreciate your input.
One quick question.
Have you been receiving any funding for the work of your organization?
>> Alec: No.
Actually when you said that — you had that poll question, our organization, disability-led organizations, are they suffering under this crisis.
I said, sometimes.
Because I can do what I need often by taking a phone call, attending a meeting like this, via Zoom or something like that.
Or going to the district and making nice with the faces and building business.
I recognize, however, that a lot of people require a lot more — to tell the truth if I myself had funding, a steady source of funding that would really increase my reach and my range.
>> Marcie: Thank you, Alec, appreciate it.
Kat, I think we have someone else up next — maybe our next speaker had to leave.
Who is up next?
>> Kat: Helen Walsh will be speaking next.
I just promoted her to panelist.
>> Marcie: Very good.
Hi, Helen.
>> Helen: Wonderful.
My name is Helen Walsh.
I run a project for many years called diverse disability media.
It is a project that is a business but specifically to address communications at the start of the digital transition.
So first off before I talk more about myself which I don’t want to.
I just wanted to thank WID and all the organizations and speakers that are going to be on this call providing us information.
This is a vital area, having a platform to communicate with each other.
And having interpreters and captioning and attention to access and seeing this all happen here, is what we need.
This is a fine example of good use of communication during a crisis, Covid or any crisis, for that matter.
My experience here in Berkeley, believe it or not, in areas of communications working with the city, county, our state is having — does have interpreters, ASL interpreters or what not.
But the accessibility of communications and networking with our disability organizations are not succinct.
I’m finding many city entities not being aware of WID, not being aware of the partnership for disaster strategies, not being aware nationally, mind you I do this work nationally, too.
So I find myself taking that awkward step of making the introduction, as a person who is just here in Berkeley, who is running that project all by herself as one person.
But this is what I’ve studied over a duration of time since I placed myself in media during the digital transition in the PBS and NPR stations and worked with create celebration of disability and helped out in marketing with Jeff Clark who was the CEO.
I put a template at the station I was working on which allowed for the opportunity to get disability into a diversity initiative.
I thought it was really important.
I did know that the community did as well.
So I was just one area providing that.
But in the area of currently, lives are being lost across the United States, we’re not providing proper ASL that is interpreters for the deaf and hard of hearing that use ASL.
We’re not providing transcripts for deaf and blind individuals to gain that information.
We also did not realize during the disaster by cutting communications funds or never providing it, which should have been under the ADA educational areas.
Disallowing people to actually have the funding within our communities to implement and work with the city or county or state or national areas, federal government to help with communications that are not only cost effective, but they’re more universal and inclusive if you apply them.
Things should be during disaster easy to read.
So it shouldn’t be an after thought not to provide considerations to usability, to people with intellectual disabilities.
I believe these areas we should be addressing, I am determined to address them.
I will during this Covid disaster crisis.
But I think as a community what we need to do is we need to change policy.
DOJ agrees that communication should be accessible.
But I think we need to take action to make sure within — that there is funding one federal government to do this.
So we need to push for that.
Two, we need to make sure our cities, states and county governments also are pushed.
I think we need to address it on a different level.
I do believe there’s hope with the digital divide, there’s a lot of people who are low income, when you talk about inclusive and access you’re basically addressing all communities.
And our most vulnerable populations that includes senior citizens, people in low income housing and people who are unhoused.
So that’s what I wanted to say.
I wanted to say we do have ability to make a difference.
We need to — what we could start is by networking better our organizations with different areas and, it’s okay if you don’t know all the technical components.
I’m constantly learning hem, too.
I’m not — I’m an expert but not the expert.
I think we’re all leaders in this.
I think communicating and providing each other information is going to help.
That is what I wanted to say.
I wanted to thank everyone here and gosh, I wish this would be on the news, not because I’m here, nothing to do with me.
It has to do with this is an example of what I’d like the future to look like so that we can save lives.
>> Marcie: Thank you very much, Helen.
Kat, do we have our next speaker ready?
>> Kat: We sure do.
Just promoted her to panelist, her name is Erin Brown and located in the Bahamas.
Are you there?
>> Marcie: Let’s give her a moment.
>> Erin has been a leader and partner and has done some really great work in the aftermath of hurricane Dorian.
Welcome.
>> Erin: Hi, can you hear me?
>> Marcie: Sure can.
>> Erin: My daughter is singing in the background or dancing so please excuse my daughter.
>> Marcie: We love singing and dancing.
>> Erin: I do, too.
I am located in the Commonwealth of the Bahamas, I am a disability advocate and disability inclusion consultant.
I am an above the knee amputee, I use a wheelchair, crutches or prosthetic legs.
I’m also an athlete.
I say all of this because a lot of times when we’re still dealing with to date is persons feel that whether you’re born with a disability or acquire a disability that potential stops somehow.
But what I will agree with is, having a disability removes your access and inclusion for a lot of things in our current structure of our society.
And pre COVID-19 here in the Bahamas we were doing well with making sure that we have things like inclusive education, access to health care, access to different protocols or emergency preparedness and planning.
But we also have our policies, we do have a disability act which has started in 2014.
But even the act itself doesn’t have adjustment orders, doesn’t have any details or structures that we can hold on to, to talk about compliance and access.
So COVID-19 for us in the Commonwealth of the Bahamas has become an equalizer, because now everybody is affected whether you have a disability or not,
You’re affected.
But our community with disabilities are having a more damaging and struggling time because we’re not understood, they don’t know our policies, because our policies and habits of our leaders have not been inclusive even in dealing with an emergency or preparedness for COVID-19.
Our emergency orders are now doing the same thing, immediately removed continuing health care.
It removed delivery access to delivery and organizations.
Our community organizations.
So in realtime we’re now faced with how do we provide this through a system that is — no, we’re not getting the funding.
Our community organizations have finally got the all clear to now — I’m sorry if I’m talking so fast.
I go speedy my apologies for that.
I’ll slow down.
Our community organizations now are able to make some type of movement but we’re still limited.
Because caregivers are not being spoken to, are not given any PPE, are not provided with the tools.
We’re still not addressing specifically what it means for our community with disabilities, which includes senior citizens and vulnerable group members.
Even that, not recognizing that our community is not just senior citizens.
Like the awareness and education is so huge right now and so as a disability advocate and disability inclusion consultant we’re losing people that we don’t even realize we’re losing.
So being on this call today is — it is such a heart moving space to be in right now.
German and Shaylin I met them after hurricane Dorian and we’ve become now partnerships with making sure that the Bahamas now has access and inclusion for disaster and emergency.
And just having a space like this has provided even me with the ability now to talk about policy.
To say what needs to be done.
And at the university of the Bahamas I’m in the office of disability and compliance.
That has never happened before.
We’re moving in realtime.
But we’re still challenged because our leaders are not giving us the funding, they’re not recognizing it.
We’re still fighting just to survive.
And so thank you for listening — I’m available on social media Erin Brown Connects if you Google me you’ll find me, everything is public.
But I want to say to you, everyone that is on this call, we cannot give up.
We cannot give up, we cannot give in.
We have to continue to speak up and represent.
Encourage us in the spaces that we’re in.
That is what we’re working through now.
We work through a lot of community organizations whether you’re disability-centric or not.
We work with them because we’re teaching them how to give access and inclusion.
How to diversify our economy during and after COVID-19.
Thank you for allowing me to share a bit.
>> Marcie: Thank you very much, Erin we look forward to continuing to work together and we will never give up and we will never give in.
>> Erin: Thank you.
>>Marcie: Kat, do we have our next speaker please?
>> Kat: We do, Marcie.
We have Marcalee who is with sustain our abilities.
Marcalee.
>> Marcie: Hi, Marcalee.
>> Marcalee: It says I’m unmuted, can you hear me?
>> Marcie: Sure can.
>> Marcalee: I will be very quick.
I am going to start my video.
>> Marcie: We’re not going to be able to show a video.
Oh your camera, I’m sorry.
You look great.
>> Marcalee: Thanks for letting me speak.
I’m very much happy to be here and appreciate the work you do and Hector and Shaylin and Carlos.
I started an organization to focus on disability and education and care during disasters and climate change last year.
We recently started a YouTube channel and it’s called sustain our abilities.
We have brought people together from ten countries or 12 now around the world.
We really want to share people’s stories of living with Covid at home.
Also other disasters such as climate change.
I hope everyone would consider coming to — send me an e-mail at sustainourabilities@gmail.com.
It is a combined effort of professionals and people with disabilities.
And so we want to be as inclusive as possible would love to collaborate with people.
Because I think one thing I would like to say here is that this is — Covid is like a dress rehearsal.
So much has been going on and so much will go on and this is so important that we collaborate and all work together.
That is all I want to say.
I don’t want to take too much time.
Thanks for everything you’re doing.
Please, it would be great if you could share a list of all the people involved so that people could continue to communicate in the future.
Thanks.
>> Marcie: Thank you very much, Marcalee, good to see you.
I’m looking forward to making a visit over to sustain our abilities.
Kat, who is our next speaker, please?
>> Kat: Our next speaker is Tiffany.
I think she might be our last, Marcie.
>> Marcie: Hm, I think some other folks have asked.
>> Kat: Sure.
>> Tiffany: Hi, Marcie.
>> Marcie: Hi, Tiffany.
>> Tiffany: My colleague is also on the call with us today.
We’re both here from ABLE South Carolina.
I am new in the role to work for advocating for persons with disabilities in emergency crisis situations.
A new part of my position, a new role for me.
So first I would like to say that our center for independent living has been amazing.
We’ve been able to reach out, we’ve gotten funding.
When the school system said we can no longer work to transition with youth because the youth are going to be at home.
We — our transition team put together a program to say, no.
We’re going to support the kids from our home.
That shows the way that our community adapts.
We do adapt.
One thing I have found that our community struggles with is that we handle situations as they come.
I think because they’re constantly coming.
We don’t necessarily read for what the policy doesn’t say.
We read for what it does say.
I did a lot of work with the medical rationing response that we put together.
And we used a lot of things that you wrote, Marcie, to research that.
But what we realized when we were working with our local government agency was, that they didn’t have policy that said that they would participate in medical rationing but they refused to release policy saying they won’t.
One of the lessons that we need to look for is to make sure that things are clear when it says what they will do.
But also what they won’t do.
Make sure that we read for what things don’t say as much as what they do say.
That was just something that’s been kind of on my heart since I started this work.
>> Marcie: Thank you very much, Tiffany, appreciate you sharing that.
And glad you’re at ABLE South Carolina.
And you all keep doing great work.
>> Tiffany: Thank you, Marcie, for all your support.
>> Marcie: Absolutely.
Thanks for yours.
>> Kat: Marcie, the next person in line is Hector.
Hector, are you with us?
>> Marcie: Wonderful.
Hector, wait a minute for Hector.
There we go.
>> Hector: Can you hear me?
>> Marcie: We can hear you but not yet see you.
>> Hector: Okay.
>> Marcie: There you are.
>> Hector: Here I am. Hi.
Thank you so much for this moment.
I just started working with Marcalee in sustain our abilities.
I am a social worker here in central Florida.
I’ve been quadriplegic from an automobile accident that I had back in 1982.
Since that time I’ve felt like I made a difference and continue to make a difference.
I started out my advocacy work in the early ’80s with President Reagan in raising the drinking age to 21 when I was injured when I was 17 years old.
In regard to COVID-19 and regard to the program, Marcie, this is awesome that we’re trying to get the word out there.
In working with sustain our abilities, I think the important part for people with disabilities to become active and learn how to advocate for themselves because if we continue to wait for others to advocate for us, a lot of us are going to be left behind.
I’m going to shoot that out.
And share with you that I’m an entrepreneur as well.
I’ve done a lot of public speaking in the past.
I plan to do that again.
I believe that because of COVID-19 I think that telehealth is just going to take off like crazy.
The issue is now to focus on those low income individuals that don’t have even capacity to even do what we’re doing today.
Do not have a tablet or a cell phone and so forth.
I’m going to work hard this year not only with Dr. Alexander with what we have done, we put together Zoom video chat in the last 30 days we’re actually finishing up our last week now.
We’re doing Zoom chat to invite professionals, doctors, any way that you’re being affected by COVID-19, whether it’s financially, by your health or even just being alone and mental health is not getting enough attention that we need it.
I’m also partnering up with Dr. Rudick who has her own program in telehealth but also in mental health.
And so that is just my piece of what I can do as an individual with a disability and see what else I can do more by uniting with you guys and just working with you guys.
Thank you so much for a few moments to share that.
>> Marcie: Thank you very much, Hector.
Appreciate it.
Kat, do we have other folks in the queue?
>> Kat: We sure do.
We have Kelly Israel who is from ASAN, are you there?
>> Kelly: Thank you for giving me the opportunity to speak with you today.
I do not want to start my video, I have my reasons just accept that.
>> Marcie: Absolutely.
>> Kelly: Thank you all for this forum today.
ASAN hasn’t been working with direct services during the pandemic but we have been doing a whole lot of information sharing.
We have consistently been on, me specifically on partnership for inclusive disaster strategies, daily Covid-19 calls to try to pick up information for our affiliates and for other people with disabilities we’re in contact with of what is going on in the COVID-19 front.
We have recently released a COVID-19 congregate setting tracker which tracks the number of COVID-19 cases in residential and congregate settings.
Group homes, assisted living facilities, nursing homes.
We feel that this — because this data is publicly available, actually the partnership is trying to collect the data on this that isn’t publicly available.
It’s a separate issue too with the survey.
But because the data is publicly available it’s a good picture of just how many of our people, we’re also tracking deaths as well, who are getting sick and dying among the disabled population to the degree that we can assist.
We’re also producing resources and advice on COVID-19 in partnership with green mountain self advocates.
Which we have released on the website for the most part.
We’re trying to get plain language resources out there on COVID-19.
We also produced a video which explains what COVID-19 is to people with intellectual and cognitive disabilities.
And as well as what they should do if they suspect they have COVID-19.
Or what they can do to — and what they can do to protect themselves from COVID-19.
Largely what ASAN is doing is trying to make sure that people with disabilities themselves who so often have limited access to information, have the information they need to weather the COVID-19 pandemic.
That’s what we’re up to.
We really appreciate all the work that is being done both internationally and elsewhere on the ground to try to combat this for our community for people with disabilities.
Nothing about us without us.
And best of luck to everyone.
>> Marcie: Thank you, Kelly.
I have the very good fortune of being together with you just about every night at 6:00 p.m. when we join the partnership for inclusive disaster strategies calls.
And your leadership and contributions are really important.

>>Kelly: (cuts out)
>> Kat: I’m so sorry.
>> Marcie: And, Kat.
Do we have somebody else in the queue?
>> Kat: We do not have anyone up in queue at the moment.
We do have one last poll if you would like.
>> Marcie: I’m going to ask for — are there any other folks who were wanting to say anything?
>> Kat: I do have Dina.
>> Marcie: Dina is asking for help to —
>> Dina: I think I’m doing it now.
Okay.
Here I am.
My name is Dina Abramson.
I am not with a nonprofit.
I’m with a state agency in Texas.
And I hadn’t really planned to speak today so I’m a little nervous.
But I’m going to try to be brief.
I just wanted to outline some of the problems that I see especially in Texas.
Working with the disability community,
I did a presentation recently for my organization staff meeting.
And I talked about a couple of things.
Attendant care being one of them.
The fact that attendants are having to be out in the community.
They’re having to work in very close contact with their clients, often without adequate PPE.
And obviously very low wages.
We actually heard of an attendant who quit her job because she could make more money filing for unemployment than for keeping her job.
Attendant care is one problem.
Access to food and medication.
I am on some organizations that are working with food access.
I’m afraid a lot of people are falling through the cracks because you can get assistance if you’re indigent.
You can get assistance if you’re homeless.
But if you’re a person with a disability or a senior who used to be independent and now can’t be independent because of the pandemic there aren’t as many resources for people like that.
They are basically told, see if the neighbor will help you.
See if a family member will help you.
But there aren’t organizations set up.
One of the things that is just baffling to me is that there’s so much emergency planning.
And now that we actually have an emergency, where are the organizations set up to help people with disabilities.
It’s now six, seven weeks into the pandemic and people are finally starting to say, oh, well, some people with disabilities don’t have transportation to go to pick up food like there’s the central Texas food bank.
There are food banks that are providing food but you have to drive up to it.
And if you don’t have transportation you don’t have a car, how are you going to get to these places that are giving out food.
Another big problem is virus testing.
In Texas and probably other states but a lot of the virus testing is drive through.
You drive up, they swab your nose.
If you don’t have transportation you’re not going to be able to get a COVID-19 test.
Especially if you are having symptoms because no public transportation is going to take you to get a virus test.
Let me see if there was one other — access to food and medication, attendant care, transportation.
Then somebody else touched on very important topic of mental health and social isolation which I think social isolation was already a problem for many people with disabilities.
Now a bigger problem now that we have to stay home.
I’m going to be meeting with some people locally in about half an hour to discuss the fact that Texas and many other states are reopening.
That is going to create a whole new set of problems because that is going to increase amount of infection.
Texas is like at the bottom of testing.
As I’m telling everybody this is not a sprint this is a marathon.
It’s going to go on for a while.
I just am very concerned that a lot of the needs of people with disabilities are not being addressed.
I just wanted to bring up some of that information.
>> Marcie: Dina, thank you very much.
I think you raised many of the issues that we have as well been raising.
I give you lots of credit as a state employee in raising these issues.
We really welcome the opportunity to work together on this.
As many of the other speakers have reinforced,
Six weeks out is too late.
This is a continual problem.
One of the reasons that we started this discussion is to surface the fact that we can’t reinvent the wheel every time.
There are organizations who can do great work.
Who are doing great work.
Who never seem to benefit from what I often refer to as the humanitarian industrial complex.
Lots of money gets put out there.
Very little of it drips down to disability-led organizations.
I think we have time for one last speaker, Kat, if we —
>> Kat: We sure do.
We have Melissa.
>>Marcie: There you go.
>> Melissa: Hi, Marcie.
>> Marcie: Good to see you.
>> Melissa: Good to see you, too.
It’s good to be back with the crew.
I’m Melissa Ortiz, I was an independent activist for several years then I was appointed by President Trump to be the commissioner of the rights on disability.
Turns out I’m not an administrator but I am advocate and I know how to get things done.
I am working independently now and loving this.
The White House has contacted me privately and they are asking for the information that you guys are putting out.
I have many dear friends who are in upper management positions at the White House who are asking for this information and believe me when I tell you that I have beat them up six ways to Sunday about not having an ASL interpreter at pressers.
And talking about people with disabilities and disabled people instead of people who are vulnerable.
They have heard it all from me.
So, this helps me be able to give them something to say, hey, this is what the community wants.
And I don’t know if this will ever come to fruition but I am working on getting a roundtable discussion together on some of these things.
And having at the table some people who will be able to help us move this forward within the White House.
So that’s where we are.
You can reach me at —
I can’t believe looking at the camera that I am actually on this camera with no makeup on but we will laugh at me later about that.
I’m DCBELLonwheels on Twitter.
My e-mail account is MKORTIZ317@Gmail.com.
I am really excited about working with all of you.
One of the other things that is very much in my heart to do is pull in the civic and faith-based communities.
Those organizations are already in place, we have organizations in place to deal with things like this but nobody is talking to each other.
So I am hoping to start some of those discussions.
And I’m proud Marcie of the work that you and WID are doing.
Quick shout out to my friend Loretta for keeping me in the loop.
And I am just excited to partner with you guys.
>> Marcie: Thank you very much, Melissa.
And we welcome every opportunity to collaborate and to focus on people with disabilities,
People who are multi-marginalized and are always at the end of the line when organizations are trying to support humanitarian actions.
So, we all must collaborate and we must prioritize those organizations led by people with disabilities.
Focusing on the whole community and working together — not only change for this time around but working together to build a system that doesn’t leave people without food.
That doesn’t leave people in congregate care settings —
>> Melissa: Exactly.
>> Marcie: Without ability to protect themselves.
>> Melissa: Exactly. I have to say,
I don’t think that it’s a lack of caring.
I think it’s a lack of understanding and I think that we need to have these conversations when the temperature is low in the room and have the conversations in such a way that everybody understands.
I think that there has been an issue lately of having conversations when everybody is upset.
And this is terrifying, all this stuff that is going on.
I actually had to say to someone who I know is one of the smartest people I know, look, how would you feel if you were told that the durable medical equipment company was coming to your house to take your child’s ventilator away.
The person said, well, I wouldn’t allow that to happen to my child.
Honey, you don’t have a choice when you have a contract.
And that was eye opening.
>> Marcie: Yeah.
I appreciate that.
Bottom line right now as we speak is people are dying in droves, and that is not okay.
>> Marcie: So, I am now going to wrap us up.
This has been an amazing discussion.
And we are actually a couple of minutes over time so I hope this was helpful, we’re going to ask one more polling question.
And this is an especially important final question.
Without further adue, I’m going to ask Kat to bring up the final question.
And while it’s up I will — Kat.
>> Kat: There we go.
It has been launched.
The question is, would you find it useful to continue participating in discussions on disaster relief funding for disability-led organizations?
We have two answers, yes and no.
I can see the results coming in.
>> Marcie: And while Kat is waiting for the results I want to thank everybody for joining us, for participating.
We’ve had a huge number of participants, most of whom have stayed throughout.
We had folks from I think 21 different countries.
And we certainly have our work cut out for us.
What you can expect from here we will be posting today’s town hall meeting on our website and on YouTube.
It will be captioned.
We will continue to dialogue with everyone.
We’ll be — depending on the outcome of the final poll we may do this again real soon.
Thanks to everybody for your contributions.
Thanks to our interpreters.
Thanks to our captioner and a wonderful, wonderful WID team.
We anticipate that our continued focus on disrupting exclusion and accelerating radical inclusion is something that folks might join us on.
Kat, do we have our results?
>> Kat: We sure do.
I will end polling, we have a 96% yes.
And 4% no.
It looks like majority thinks we need to have lot more conversations about this.
>> Marcie: Fabulous.
Count on the fact that this is just the beginning.
Thank you all very much.
More importantly than talk,
This is the beginning of action.
Talk is not enough.
Be safe.
Be well.
Never give up, never give in.
Thank you everybody.
Have a good day.

Video available on the Global Disabilities and Disaster Town Hall event page.


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

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Text overlay: Technology Specialist. Deep violet background with computer icon displaying code.

Job Opportunity: Technology Specialist

About WID

The World Institute on Disability (WID) was established in 1983 as one of the first global disability rights organizational think tanks, founded and continually led by people with disabilities. WID works to advance the rights and opportunities of over one billion people with disabilities worldwide, bringing research and policy into action and operationalizing inclusion.

Our work centers around Digital Tools for Optimizing Community Living and Employment; Accessibility Solutions; and Excellence in Disability Inclusive Emergency Preparedness, Disaster Risk Reduction, and Climate Resilience and has included groundbreaking work in disability benefits, financial literacy, healthcare equity and social justice empowerment.  WID is a nonprofit 501(c) (3) organization recognized by the US Internal Revenue Service.

The Board of Directors and staff, over half of whom are people with disabilities, are respected national leaders in the disability rights field as well as in industry, government, and social services. This enables WID to bring a cross-disability perspective to the policy arena. Information on WID’s programs can be found at www.wid.org.

Position Summary:

The Technology Specialist reports to the Director of Operations, assists with WID’s technology operations, usability testing program, electronic and online communication. This position is responsible for proctoring usability testing sessions, analyzing issues, and reporting to clients in a manner that is clear and easy to understand. The Technology Specialist is responsible for the maintenance and expansion of the WID website, keeping an emphasis on accessibility and manages onsite and remote conference technology. This position requires multitasking, fast turn-arounds and strong team work experience.

Hours: 40 hours per week

Essential Functions:

User Experience

  • Manage the user testing participant list including recruitment of testers, as well as maintaining and updating the external intake form and the internal database of user testers and their relevant skill sets and testing abilities.
  • Coordinate and proctor usability sessions.
  • Keep abreast of assistive technology trends.
  • Keep abreast of general online and app technology trends.

Website and Electronic Communication Development

  • Update website content:
    • Perform routine administration such as; edit pages, add pages, add/change menu items, and maintain content on WID’s WordPress site.
    • Work with marketing to determine graphic needs within the website’s layout.
    • Integrate graphics, audio, and video throughout website.
    • Upkeep WID’s access standards to assure that the website meets universal accessibility standards for effective communication.
  • Monitor website traffic analytics

Audio Visual (A/V) and Teleconference technical work

  • Remote Open Captions at large scale events
    • Work with conference A/V teams to secure remote open captioning equipment and appropriate line drops for WID supported events.
    • Travel to be on-site contact to work with A/V teams to overlay captions on the main screens or on smaller screens when applicable.
  • Teleconference and Webinar support
    • Aids staff or clients with conducting video teleconference (VTC) sessions, which may include conference preparation, monitor VTC equipment and system performance.

Minimum Qualifications:

  • Experience using MS Office Suite, Dropbox, Zoom, Survey Gizmo, MailChimp, Google Apps suite and the Internet.
  • Experience with JAWS, NVDA, Captioning, adaptive equipment and other assistive technology.
  • Experience with WordPress business and Adobe suite.
  • Strong understanding of Audio-Visual technologies used in event settings.
  • Experience in database development and management.
  • Professional writing and oral communication skills.
  • Friendly, conscientious, organized, detail oriented, punctual.
  • Works well independently, takes initiative.
  • Quick learner, ability to problem solve.
  • Ability to travel for project related assignments.

Preferences:

  • Experience with technical report writing; particularly explaining complex information in an easy to understand manner.
  • Experience creating PowerPoint documents and visual presentations of complex data.
  • Experience with independent living philosophy and the larger social justice movement.

Reporting Relationship: 

Director of Operations

Status:  

Exempt, full-time, generous benefits package 

Compensation:  

Commensurate with experience

Application Process:

Send resume, cover letter, salary requirements and references to: World Institute on Disability; EMAIL: Kat Zigmont – kat@wid.org

(WID acknowledges receipt of applications by email only)

Application Deadline

May 29, 2020 by 5pm PDT

Proposed Start Date:

Mid-June, 2020

Reasonable Accommodations:

Address reasonable accommodation requests for the application/interview process to kat@wid.org.

WID promotes a scent/chemical free environment. To support this effort, WID asks that all applicants refrain from wearing scented products while in its office.

Telework/Relocation:

WID is interested in remote candidates, national applicants encouraged.

WID cannot cover the cost of travel or relocation, but encourages all interested applicants to apply.

The World Institute on Disability is an equal opportunity employer with a commitment to diversity. Individuals will not be discriminated against regardless of race, ethnicity, religion (creed), national origin, age, sexual orientation, gender identity, gender expression, disability or veteran status, and other personal characteristics.


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

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Text overlay: Director of Marketing + Communications. Eggplant purple background and laptop with open WID envelope icon.

Job Opportunity: Director of Marketing + Communications

About WID

The World Institute on Disability (WID) was established in 1983 as one of the first global disability rights organizational think tanks, founded and continually led by people with disabilities. WID works to advance the rights and opportunities of over one billion people with disabilities worldwide, bringing research and policy into action and operationalizing inclusion.

Our work centers around Digital Tools for Optimizing Community Living and Employment; Accessibility Solutions; and Excellence in Disability Inclusive Emergency Preparedness, Disaster Risk Reduction, and Climate Resilience and has included groundbreaking work in disability benefits, financial literacy, healthcare equity and social justice empowerment.  WID is a nonprofit 501(c) (3) organization recognized by the US Internal Revenue Service.

The Board of Directors and staff, over half of whom are people with disabilities, are respected national leaders in the disability rights field as well as in industry, government, and social services. This enables WID to bring a cross-disability perspective to the policy arena. Information on WID’s programs can be found at www.wid.org.

Position Summary:

The Director of Marketing and Communications reports directly to the Executive Director/CEO and is responsible for creating and overseeing all WID’s communication functions. This includes the planning, development and execution of the organization’s marketing, public relations, public awareness and communications strategies. This position also oversees all creative projects, organizational branding and messaging, annual report and helps direct annual event strategy. This role will serve as a key member of the leadership team. The ideal candidate is an experienced leader with demonstrated success in defining marketing campaigns and developing executable communications plans to support organizational goals and objectives and developing interdependent strategic alliances among key stakeholders.

Hours: Full-time

Essential Functions:

  • Act as a thought-leader and change-agent across all aspects of marketing: communications, digital marketing, public relations, messaging and brand, content marketing and events.
  • Continuously develop and evolve the WID brand to differentiate and elevate WID as a systems-change leader globally, and across sectors.
  • Be an expert at writing compelling content to multiple target audiences and simplifying complex concepts and data into content for all communications channels – social, email, web, etc.
  • Develop brand communication strategies that reflect the vision of WID that result in integrated marketing executions and multi-channel communications.
  • Successfully use analytics, market research, communications, public relations, cause and digital marketing to generate profitable leads, donations/investments, and grow community partnerships and strategic alliances.
  • Lead all marketing projects including research reports, translating policy implications into workplace and marketplace adoption, collateral, donor and strategic communications, online campaigns, targeted marketing, cause-related and multimedia including video production.
  • Manage the strategy, creation and execution of all branding, website content, public relations, social media and marketing campaigns and serve as a key content writer and editor for the organization.
  • Create strategy for consistently delivering great end-to-end customer experience across stages, channels and touchpoints for WIDs supporters, members, partners, etc.
  • Leverage existing and additional relevant technologies for reporting and analytics across external facing functions and channels.
  • Evaluate data and methods to select measurements, reports and metrics that provide clear and valuable insights into WID customer behavior, experience and loyalty.
  • Research, identify and maintain friendly business communications with potential donors and sponsors and implement strategies to foster positive relationships.
  • Develop and organize all aspects of WID’s fundraising programs including mailings and annual fundraising drives.
  • Grow a major gifts program including identification, cultivation, solicitation and ongoing liaison with major donors.
  • In collaboration with WID’s executive team, manage grant seeking efforts including research, proposal writing, and reporting requirements.
  • Able to juggle multiple tasks with competing deadlines.
  • Other duties as assigned.

Minimum Qualifications:

  • Experience with independent living philosophy and the larger social justice movement.
  • Develops and maintains a thorough knowledge of the issues and concerns of people with disabilities and the intersections with stakeholders and funders.
  • Understanding of, sensitivity to, and respect for the diverse, socio-economic, ethnic, religious, and cultural backgrounds, disability, and sexual orientation of population.
  • Demonstrated initiative to raise funds at a level that meets or exceeds annual goals.
  • Understands all facets of marketing and communications, duties and responsibilities, keeps job knowledge current.
  • Builds and leads strong teams that apply their diverse skills and perspectives to achieve common goals.
  • Develops people to meet both their career goals and the organization’s goals.
  • Paints a compelling picture of the vision and strategy that motivates others into action.
  • Maneuvers comfortably through complex policy, process and people related organizational dynamics.
  • Recognizes the value that different perspectives and cultures bring to an organization.
  • Adapts approach and demeanor in real time to match the shifting demands of different situations.
  • Ability to travel for project-related assignments.

Education & Expertise:

  • Bachelor’s degree in marketing, English, or other business-related field or equivalent hands-on experience.
  • 5+ years of marketing experience, preferably in a nonprofit and disability related field.
  • 3+ years managerial experience with demonstrated expertise in managing a team with diverse capabilities.
  • Excellent communication skills with the ability to interact effectively with the Leadership Team.

Reporting Relationship: 

Executive Director/CEO

Status:  

Exempt, full-time, generous benefits package 

Compensation:  

Commensurate with experience

Application Process:

Send resume, cover letter, salary requirements and references to: World Institute on Disability; EMAIL: Kat Zigmont – kat@wid.org

(WID acknowledges receipt of applications by email only)

Application Deadline

May 29, 2020 by 5pm PDT

Proposed Start Date:

Mid-June, 2020

Reasonable Accommodations:

Address reasonable accommodation requests for the application/interview process to kat@wid.org

Telework/Relocation:

WID is interested in remote candidates, national applicants encouraged.

WID cannot cover the cost of travel or relocation, but encourages all interested applicants to apply.

The World Institute on Disability is an equal opportunity employer with a commitment to diversity. Individuals will not be discriminated against regardless of race, ethnicity, religion (creed), national origin, age, sexual orientation, gender identity, gender expression, disability or veteran status, and other personal characteristics.


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

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Text: Global Disability + Disaster Town Hall Meetings. Collage of ears, speech bubbles, hands signing, and a hand using a communication board.

Global Disability and Disaster Town Hall Meetings

Hosted by the World Institute on Disability

Share your COVID-19 experience – we’re listening:

When disaster strikes, disability-led organizations are the ones on the ground, trying to fill the gaps without equitable access to traditional disaster relief channels.

We’re bringing disability leaders and trusted allies together in disasters to disrupt exclusion and accelerate radical inclusion.

How will we do it?

  1. Listen

We’re listening: What’s happening? What do you need?

  1. Organize

We’re organizing: Where are the gaps? Who has the resources?

  1. Build

We’re building: A more equitable response to COVID-19, and whatever comes next.

Launch of the Global Alliance for Disaster Resource Acceleration

Please join WID, The Partnership for Inclusive Disaster Strategies, and ONG Inclusive for the launch of the Global Alliance for Disaster Resource Acceleration on Thursday, July 9 at 9 AM Pacific Time/12 PM Eastern Time (NY Time)/4 PM UTC. Click the registration link and the linked image below for more information.

Registration link for the launch of the Global Alliance for Disaster Resource Acceleration

Launch Event: Global Alliance for Disaster Resource Acceleration. Thursday, July 9, 2020. Logo for the Global Alliance for Disaster Resource Acceleration. 6 arrows wrapping around an invisible sphere, each a different color - orange, red, purple, blue, green, and gray.

Past Global Disability + Disaster Town Hall Meetings

Session 2: Thursday, June 4, 2020

Recorded session + transcript:

Transcript for WID Disability + Disaster Global Town Hall, Session 2

Session details

Thursday, June 4 from 12:00 noon – 1:30 pm EDT/4:00pm-5:30pm UTC

International Sign + Captioning in English

With opening remarks from German Parodi, Co-Executive Director, Partnership for Inclusive Disaster Strategies

This webinar will serve as a community forum for sharing and storytelling as we, the global disability community, reframe the debate on disability inclusion in disaster planning, response, recovery, and mitigation. Please sign up to speak via our speaker sign up form – we will be prioritizing voices from diverse locations, multiply-marginalized people with disabilities, disability-led organizations, and those who did not speak at our last session.

Download full invitation for session 2 (Accessible PDF)

Text file (.TXT) available by email at info@wid.org

Flat PNG (click to open PDF):

Infographic. Accessible version available, follow link titled

Session 1: Thursday, May 7, 2020

Recorded session + transcript

Transcript for Global Disability and Disaster Town Hall session, May 7 2020

Session details

Thursday, May, 2020 from 1 – 2:30 PM EDT

International Sign + Captioning in English

Marcie Roth, WID’s Executive Director/CEO, creator and former director of FEMA’s Office of Disability Integration and Coordination will provide opening remarks and engage conversation with disability community disaster response leaders. The webinar will then open and become a community forum for sharing and storytelling as we, the disability community, reframe the debate on disability inclusion in disaster planning, response and mitigation. Please prepare to share your thoughts, needs, and stories, or email in advance to info@wid.org.

Download full invitation (Accessible PDF)

Text-only PDF

Text file (.TXT) available by email at info@wid.org

Flat PNG (click to open PDF):

Infographic. Accessible version available, follow link titled


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

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Deep magenta banner with text, "Call for Trainers". Icon of laptop with a person onscreen with tiny WID globe in corner of the screen.

Opportunity: Call for Trainers

Call for trainers: WID is looking for a staff trainer with demonstrated expertise in disability and accessibility, through the lens of global social justice.

We are looking for the trainings to cover: racism, sexism, unconscious bias, structural oppression and intersectionality inclusive of disability; discrimination and harassment prevention do’s and don’ts; as well as interpersonal relationships and appropriate professional behavior in the workplace.

The right trainer will be versed with all National Fair Employment regulations and trends, and be able to train WID’s staff remotely over a period of time as a series of trainings.

If you are qualified and interested in this opportunity, please complete our Trainer Application form so that we may contact you.


For more opportunities to get involved with WID, visit our Opportunities page.

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

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