> 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.
I can see results coming in, very exciting we’ll just wait a moment while people are voting.
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.
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 ]
>> 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.
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.
I can see participants answering right now.
I’ll give everyone a few minutes or a minute.
a few more.
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.
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.
>> 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
Twitter at autistic reality.
Many thanks for having me here and I don’t want to tie up the line for too much longer.
>> 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.
>> 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.
>> 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,
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.
>> 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 firstname.lastname@example.org.
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.
>> 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.
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.
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.
Never give up, never give in.
Thank you everybody.
Have a good day.
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