While conservatorships have been around for decades, it was not until pop star Britney Spears’s ongoing conservatorship dispute made the headlines in early 2021 that such a concept came to be mainstream.
The topic started to grab the media’s attention when The New York Times released the “Framing of Britney Spears” documentary in Feb. 2021. As Spears’s court hearings were made public, the conversation around conservatorships and guardianships only intensified.
In legal practices, a guardian is a court-appointed authority who takes care of people who cannot take care of themselves.
The documentary special chronicled the pop singer’s life, focusing on the past thirteen years that she was under her father and attorney’s conservatorship, forcing her to live under strict and restrictive living conditions. Under her conservatorship, Spears doesn’t have control over her finances, reproductive health or mental health care.
The court-supervised conservatorship gives Spears’s father control over her $47 million estate as well as her professional and personal affairs. Spears has been under this stringent arrangement since 2008 — after she experienced very public mental health episodes.
In recent months, the #FreeBritney campaign that her devoted fans have spearheaded since 2019 has skyrocketed. On June 23, Spears testified in front of Judge Brenda Penny uninterrupted for 24 minutes.
To many, the fact that a successful celebrity is under such restrictive and intrusive care and order of her father is shocking. The New York Times film briefly brushed over the fact that a conservatorship is typically placed on the elderly or those with intellectual disabilities who can no longer take care of themselves.
However, what is grossly getting left out of Spears’s narrative is that under the gaze of the legal system, she is essentially deemed as a person with a disability. What sets Britney Spears’s conservatorship case apart from millions of people with disabilities is that it has the public batting an eye. Because of the sensitive nature, conservatorship hearings and proceedings are usually private and confidential, making them seem much less common than they actually are.
A commonplace for people with disabilities
Conservatorships are often a way for caregivers or family members to abuse their power and abuse people with disabilities, even those without intellectual disabilities or mental health illnesses. Often, conservatorship laws do the exact opposite of what they are meant to. Instead of having people with disabilities’ best interests, they impede the advancement of disability rights and deny disability justice to the beneficiaries.
The AARP estimates that about 1.5 million adults are under a conservatorship or guardianship in the U.S. However, this is merely a gross underestimate — there are no federal or state regulations to track who is put under a conservatorship. The ACLU reports that people only end up under conservatorships if they are assessed as having some type of disability. And, conservatorships controlling a person’s way of life — from forced sterilization to being banned from marriage to limited child visitation rights — is all too common for adults with disabilities under such legal care.
Many local governments continue to use conservatorships to force people with disabilities experiencing homelessness off the streets and into institutions. The disability community often refers to guardianships as “civil death.”
Sara Luterman, a journalist who is autistic and partially blind, told Slate, “You essentially legally stop being a person. All of the civil rights that you have are basically afforded to your guardian.”
Like conservatorships, institutionalization has a long history of disempowering disabled people. The primary difference is conservatorships remove the physical location of abuse and control while keeping in place systems and ideologies that assert that disabled people deserve to have their rights and independence taken away from them.
Conservatorships and reproductive rights
What Spears is enduring here is forced sterilization, a procedure with profound physical and psychological effects. Across the globe, people with disabilities are subjected to forced sterilization nearly every day. This is essentially a part of the eugenics-based practices of population control, attempting to prevent children from inheriting disabilities.
Forced sterilization for women with disabilities is technically legal in the United States. In the 1927 Buck v. Bell case, the Supreme Court ruled that a state statute allowing compulsory sterilization of people with disabilities did not violate the Fourteenth Amendment as long as it was “for the protection and health of the state.”
Supreme Court Justice Oliver W. Holmes ruled in favor of the decision and stated that “three generations of imbeciles are enough.” This statement harms people with intellectual disabilities or mental health illnesses the most — those who are too often wrongfully referred to as “feebleminded.”
Although the Americans with Disability Act (ADA) of 1990 significantly discouraged and reduced the number of coerced sterilizations performed, the Buck v. Bell decision still stands to this day. An estimate of 70,000 people with disabilities were forcibly sterilized as a result of the ruling.
Attempting to end conservatorships is a Catch-22
A recent New York Times investigation revealed that Britney Spears had attempted to get out of the conservatorship earlier and more often than not over the past 13 years. This directly contradicts her father’s sentiments that he “would love nothing more than to see Britney not need a conservatorship.”
Long before Britney Spears even came into the picture, disability rights advocates and disability justice organizations have been fighting to reform guardianships. Advocates say conservatorships often violate the civil rights of people with disabilities, but remain extremely difficult to terminate.
To get out of a conservatorship, the person needs to prove to the judge that they are now fully capable of managing their own affairs. However, once the person is deemed incapacitated, it is nearly impossible for them to prove that they’ve gained the skills and knowledge to live independently.
What’s more, the petitioner is not necessarily entitled to a lawyer to get out of a conservatorship. And depending on the restrictions the conservatorship imposes, the person does not even have access to the courts, especially if the guardian does not agree that the court order should be lifted. It presents itself as a Catch-22.
In Spears’s situation, her lawyer, Samuel D. Ingram III, earned $10,000 a week for doing essentially nothing. So, it was most definitely not in his best personal interest to grant Spears her request to terminate the conservatorship.
If a celebrity with insurmountable fame and fortune like Britney Spears could not terminate her conservatorship for over 10 years, what hope does an average person with a disability have?
A better alternative to conservatorships
Before Britney Spears’s case, the general public probably did not have the slightest idea of what a conservatorship was. With the sensationalized, although much needed, attention about the misuse of such legal power, the general public must become aware of how common it is used to take advantage of or take control away from people with disabilities who are fully capable of managing their own affairs, especially those who are multiply marginalized and who are not celebrities.
Disability rights advocates have been demanding a better alternative to conservatorships: supported decision-making. In this case, the individual with a disability has a network of people they trust to help them make decisions — from managing assets and balancing checkbooks to choosing a place to live — instead of having court-appointed guardians to manage their affairs.
Everyone, with or without disabilities, relies on advisers, family members, friends and colleagues to make decisions in their daily lives. So, there is no need for an evasive system like conservatorships to protect or assist people with disabilities. Britney Spears does not need to be tied in a conservatorship, nor do thousands of people with disabilities. Disability justice means dismantling public perceptions that enable the abuse of people with disabilities.
To free Britney is to free all those who’ve been forcibly placed under conservatorships and guardianships.
Sarah Kim is a freelance writer for WID, journalist and content writer. Her journalistic work focuses on the intersectionalities of race, gender, politics, and culture with disability. She has written for The Daily Beast, Insider, TIME, Teen Vogue, Betches, Bitch Media, and many more. During the hours of 9-5, Sarah is a content writer at a property technology startup. You can find her work at beingsarahkim.com.
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.
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The UX Specialist reports to the Senior Director of Operations & Deputy Director and will work closely with the Technology Specialist to coordinate WID’s Accessibility Solutions and Universal Design Division. As a heavily customer-facing position that plays a pivotal role in the experience clients/customers have when interacting with WID, the UX Specialist is responsible for proctoring usability testing sessions and focus groups, analyzing issues, and reporting to clients in a technical manner that is clear and easy to understand. This position supports the maintenance and expansion of WID’s user testing database and the management of onsite and remote conference accommodation solutions. This position requires excellent people (soft), multitasking, and technical writing skills; the ability to quickly turn around testing reports; and strong teamwork experience.
HOURS: 40 hours per week
Please note this job announcement is not designed to cover or contain a comprehensive listing of all the activities, duties, or responsibilities that are required of the employee for this job. Duties, responsibilities, and activities may change at any time with or without notice.
User Experience Testing, Focus Groups, and Surveys
Manage the user testing participant list, such as recruiting testers, maintaining and updating the external intake form, and the internal database of user testers.
Coordinate, schedule for, and proctor accessibility usability sessions and focus groups.
Comfortable troubleshooting accessibility and technology issues, under pressure and time constraints, during proctoring sessions.
Analyze and report to clients findings/results from usability testing and focus group sessions that have tight deadlines.
Keep abreast of assistive technology, web, and app technology trends.
Basic understanding of built environment regulations and trends.
Create unbiased and comprehensive surveys, as well as monitor and analyze survey results.
Work with the Office Manager to arrange for and schedule consultants to provide disability-related accommodations when needed.
In-person and Teleconference Accessibility
Coordinate 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.
Assure A/V teams are comfortable and understand the technology needed and how the technology is integrated into their event.
Travel to be the on-site contact to work with A/V teams to overlay captions on the main screens or smaller screens when applicable.
Implement the onsite A/V-related components with the local A/V team.
Coordinate and staff a disability concierge desk at in-person events.
Work with the Office Manager to arrange for and schedule consultants to provide disability-related accommodations when needed.
Respond to and assist in-person event participants with their accessibility-related needs.
Teleconference and Webinar support
Aid staff or clients with conducting video teleconference (VTC) sessions, which may include conference preparation, monitoring VTC equipment and system performance.
3+ years of prior experience proctoring user testing sessions and/or focus groups.
Excellent people (or soft) skills, including coaching skills to motivate individuals who have become so frustrated at doing a certain task that they are about to give up and/or want nothing more than to pack up and leave.
Stamina for conducting long hours of back-to-back testing sessions and tasks related to teleconference and in-person conference accessibility.
Ability to write reports to meet quick turnaround times.
Ability to troubleshoot issues with assistive technologies.
Ability to observe how well assistive technology works during testing sessions and understand how its functioning can contribute to user testers struggling through sessions because they are unaware that the assistive technology is insufficiently relaying critical information they need to complete assigned tasks.
Enjoy repetitive tasks and have the patience and the ability to explain steps and tasks clearly.
Experience using MS Office Suite, Dropbox, Zoom, Alchemer (previously Survey Gizmo), MailChimp, Google Apps suite, and the Internet.
A basic understanding or ability to learn the functionality of assistive technologies WID tests with that include, but are not limited to, JAWS, NVDA, captioning software, Dragon Naturally Speaking, as well as adaptive equipment.
Experience in database management.
Professional writing and oral communication skills.
Send resume, cover letter, salary requirements, writing sample, and references to: World Institute on Disability; EMAIL: Josephine Schallehn, Josephine@wid.org(WID acknowledges receipt of applications by email only)
Application Deadline: July 30, 2021, by 5 pm PT
Proposed Start Date: August 2021
Address reasonable accommodation requests for the application/interview process to Josephine@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.
WID is interested in remote candidates, national applicants are 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.
Hello, everyone. And welcome back to What’s Up WID, the World Institute on Disabilities podcast where we discuss what’s up in the disability community across the globe. If you’re new here, I’m your host, Ashley Inkumsah. Now, a couple of weeks ago, I had the pleasure of speaking with the wonderful Kamilah Martin-Proctor. Kamilah is the founder of the Martin Multiple Sclerosis Alliance Foundation. She’s also the chair of the Washington D.C. Commission on Persons with Disabilities. And prior to that, she was the vice chair on President Barack Obama’s National Council on Disability. She’s also worked with Texas Congresswoman Sheila Jackson and New Jersey Senator Robert Menendez. And we are also so happy to call her one of our board members here at WID. I was so excited to speak with Kamilah and she’s, by the way, had over 20 years of experience in the inclusion space and in workforce development. But it was such an honor and a pleasure to speak with her about why unconscious bias, also known as implicit bias, affects people with disabilities, especially those of color.
We also talked about the fact that now as vaccines have rolled out and the world is reopening, there is apprehension from people with disabilities to return back to a so-called normal that wasn’t really working for the disability community to begin with. So we had a really awesome conversation and it was super thought provoking. And I really hope that you enjoy today’s episode. It’s such a pleasure to have you as a guest today on today’s podcast. And I’m really looking forward to having this much-needed conversation about unconscious bias, particularly against people with disabilities in the workforce. So my first question for all of our guests is always, how are you doing and how are you feeling today?
Thank you so much for asking, Ashley. I’m doing well here on this hot rainy day here in Washington D.C. A lot of us are under a lot of stress at this point where we’re stressing because you don’t know how long the vaccination is going to last. We’re stressing because our work environments are possibly changing once again, and they’re going to do what they always do and trying to pull back a lot of the progress that we’ve already made in an effort to go back to the solution of power. So am I doing okay? Yes, but big picture. I think a lot of my friends and fellow colleagues and disability community probably are not doing as well.
Absolutely. I think one of the things that came out of this past year and a half of COVID was we suddenly became so much more accessible, our entire society, than we had been in the past. And living in this remote environment has been really convenient for people with disabilities. And now we’re at a time where people, I know my mom and my best friends are now being asked to go back to work. And it’s just really stressful. It’s just adding to the already stressful environment that we’re under.
Yeah. We haven’t even dealt with the trauma that we’ve already been through. For all of us, particularly here in D.C., there was an insurgence. Nobody wants to talk about that. That Black Lives Matter protests that are continually happening. And I do think that a lot of that needs to be addressed and it comes under the topic for today with regards to unconscious bias.
Absolutely. I think, yeah, that’s a great segue. So although unconscious bias is certainly a term that’s becoming more and more ubiquitous, I would say there’s maybe some people who are still not even familiar with what the term really means. So could you define for our audience who may not know what exactly is unconscious bias?
It has a very unique and academic term and you’ll see it a lot in the universities. There are a lot of conscious courses on unconscious bias and, or otherwise known as implicit bias. And to just be very clear, I use this definition because I have a lot of mentees, I work with the Girl Scouts, and I to tell them that unconscious bias is you feeling a certain way about a person based on most likely erroneous information that you’ve received. And I tell them, “It’s not always your fault. You are being bombarded with so many pieces of information from the media, from friends, from family that may, in turn, have you developing stereotypes and let’s say overall opinions about a person that you don’t even know based on that unconscious information that you’re being bombarded with daily.”
So that’s what unconscious bias really is. It is those little, teeny tiny pieces of stereotypes and erroneous information that you have been taught and, or heard that you now apply to another person just based on having not even gotten the chance to know them.
Absolutely. And I think that unconscious and implicit biases, sometimes it’s even more dangerous than explicit bias, because it’s so covert. And so you can’t easily detect it. And sometimes it’s born out of innocence, even within the person who is the perpetrator of it. They don’t even realize that they’re doing it. They’ve just been poisoned by the ablest ideology, the racist ideology, the sexist ideology that’s been just indoctrinated within all of us as a society.
Exactly. I completely agree with that. And we do try and give our family grace with regards to that. And my mother is an educator and she loves to tell me all the time, “Everybody doesn’t know everything that you know. And though you didn’t go down the path of education, I need you to sometimes be that good teacher every once in a while.”
Absolutely. Yes. How does unconscious bias affect particularly people with disabilities?
Oh, my goodness. There’s several layers with regards to that. If we want to talk specifically about the labor market, which I think is going to become very important as we try and transition back to what I hope is a more equitable labor environment, it starts from the beginning. As individuals with disabilities started looking at the job applications or the job postings, are they accessible? Can I do a paper application, because the websites you have up is not necessarily working? Can somebody from USA Jobs, give me a little help to find the right buttons? And it goes beyond just making sure that the organization has the standard EOC documentation up? Has that company built a reputation for accessibility? Have they built a reputation for welcoming individuals with differing communications patterns or veterans with disabilities? And do they make asking for accommodations easy or do you feel like it’s an interrogation?
Sometimes I think we forget that. When you’re asking for an accommodation, you are technically asking that person for some of their most personal medical details. So does that company have a reputation for making that process easy or for making it uneasy? And that comes from the unconscious bias of thinking an individual with a disability will not be able to do the job that you are trying to hire them for.
Absolutely. Absolutely. And how do you think that organizations can begin to work to eliminate this unconscious bias that discriminates against people with disabilities in their hiring processes?
With regards to their hiring processes in particular, I think it should stop being just one person. I think that the hiring process should be more of, it may be a little bit more work, but it should be more of a matrix model. I think when you apply to a school, college, or even a high school here in D.C., you have to go through a process. And then there are several people that are able to review that application and give you different points of view and making sure that that table of individuals that are reviewing that application are at the table are diverse. I would also pull out the analytics. I don’t think the code that is currently written that is pulling people’s applications is necessarily equitable or equal to everyone, because it’s being written by a certain segment of the population. And as such, it will tend to lean more towards that segment of population. So I think that those will be my two things, having a wider panel to review applications, having more accessible application platforms and then pull out the analytics.
Yeah. I think people with disabilities should be even involved in that process. That wider panel should include people who are multiply marginalized, people of different genders, of different races and people with disabilities should be in that position to be evaluating. I think that would be my personal dream scenario for sure.
How would you say that, you’ve touched on this before, you started to talk about this accessibility or lack thereof, how has that entwined in the exclusion of people with disabilities in the workforce?
I think individuals are excluded from the workforce based on, as I think we had discussed previously, unfortunately, this unconscious bias that they will not be able to do the job. You will get past a certain point in the interview and then you’ll come to some very uncomfortable questions like, “Well, are you going to be able to travel?” “Yes. Yes, I can.” “Are you going to be able to process these widgets as fast as I need them done?” “Yes. Yes, I will. I may not do it the same as somebody else, but I can still meet these goals.” There becomes an unconscious bias in the sense that everybody has to do everything the same way. We don’t. Every individual person is going to be able to bring something new and unique to that process or to that table, especially individuals with disabilities, because we’ve had to learn how to, what did the kids call it now? Life hack? From day one.
I got you. Yeah. Literally.
From day one, we will be able to come to a situation and find a different, possibly even better, more succinct way of that process. If you put your bias aside and give people the opportunity.
A lot of people would say we have the ADA and we have all of this legislation and policies that should protect against discrimination. What government policies in the United States and globally help protect against unconscious bias and why does it seem there’s a disconnect there?
You know what I learned as a political science major? That our laws are written to be reactive, not proactive. We have a lot of amazing policies and legislation and regulations on the books, there is no enforcement protocol in place. And I think that’s where the disconnect is. I think that a lot of what happens is after the fact. We look towards that legislation to say, “Well, I was discriminated in this way and that’s what violated this law.” The laws aren’t being implemented proactively. And I think that truly is where the disconnect. I do think some, don’t get me wrong, some of this legislation can be updated and written better and could be more inclusive with regards to making sure that we’re touching on some of the gaps that are now occurring, especially with regards to technology. But until we get that implementation piece, it’s all going to still just be reactive.
And having to have to go through the process of gathering evidence to file your complaint or to make your case, it is exhausting and is just another round robin of unfortunate events that doesn’t really lead us anywhere. I think we need to take a different look at this. How do we implement these laws, so that they are proactive and not reactive?
Absolutely. Yeah. How do we, yeah, as everyday citizens? Is it going to take a grassroots movement? How do we get the government and the powers that be to implement these laws? I think of a Bradley Lomax, for example, the Black Panther. He enacted so much change to get the 504 section of the Rehabilitation Act to be implemented. How do we become Bradley Lomaxes? How do we do that kind of thing?
Okay. I actually talk about this with, I believe it’s my Gen Z-ers and my millennials. I’m a proud Gen X-er just to put that in context.
Yes. But I think you guys have to be able to tap into your power. Each generation’s had to push the first generation or the generation before them just a little bit. The baby boomers, you guys have to remember, when they started work, they had to come to work every day in a three-piece suit. They had no vacation time. They had to beg for lunch hours. They were literally locked at the desk for eight hours. What did they push for? Free dress Friday. I’m sorry, it’s called casual Friday. And then they pushed for vacation and sick leave. And then you had, I guess, the next generation, possibly the Gen X-ers, we pushed for work-life balance and creating what that looks like.
I’m expecting my millennials and my Gen Z-ers, and, I guess, the generation after that, to start pushing for the fact that there is a different way to do things. You guys can do everything that is needed to be done from your watch. That is just a fact at this point. We really can. Why are we going back to these cubicle farms? How are we not focusing on making this place more accessible for having that global citizen community that I know we all really want? How are we not holding these companies more responsible for the health and welfare of their employees? I know people don’t to say this, but I truly believe that either directly or indirectly, a lot of what happened with this virus was because we had everybody packed into these spaces eight hours a day with no air, and no sunlight, and it’s overcrowded. And it’s all so your boss can walk around and make sure that you’re doing your job. And then we had to stop. And everybody’s still did their job.
So I’m expecting my millennials to say, “Wait a minute. Stop. I don’t want to go back to a situation that physically harmed my health when I can still do my job in a safer, more complete and accessible environment.” That’s what I’m expecting you all to do. And I’m on my way out.
We need the next generation. Absolutely. Yeah. I feel like, yeah, if anything that we learned from the past year and a half is that we can be equally as productive, if not more productive, if you think about it, when we’re working in the comforts of our own home. So it’s discouraging to see how so many employers are just like, “Okay, let’s go back. Let’s go back to normal.” Normal, so-called. Well, normal was never working to begin with, honestly.
No. Yeah, absolutely. But I would also want to have that conversation. I think that’s the other piece that’s missing. What do we need to be talking about? What do we need to be having and giving to each other, generationally, to move forward?
Yeah. You see that commercial with Dr. Rick how not to become your parents and he’s throwing everybody’s signs out.
Yes. I’ve seen that commercial.
How do we have that conversation about let’s do this different and that change is not a bad thing?
Yeah. I think at least speaking from the point of view of a millennial, I’m not sure about the Gen Z kids, but I would imagine they would have the same issues. I think our attention spans are not where the boomer generations or Generation X, we don’t have the same attention spans because there’s too much technology and there’s just too much going on, too much stimulation. So I think that we don’t have the same attention spans, although you could make the same argument and say that social media, really in the last year and a half, has proved to be such a powerful, powerful tool. So I guess it’s a double-edged sword. It really is.
I agree with that to a certain extent, but I hate that it’s shaded in such a bad light. I was like, “What kid didn’t have a bad attention span at 20?” I don’t understand why, all of a sudden, it’s like, “They don’t have an attention span.” I was like, “You didn’t either.” You don’t get to have intention span until you’ve actually done some things, until you’ve learned how to sit still. For women in particular, I think that we learn attention spans earlier, because we have to sit down and get our hair done. Somebody has to do our hair. And I think that that takes time to learn to build. I hate that that’s seen in such a bad light or in such a negative conversation. Suddenly they don’t have good quote, unquote attention spans. Who determined what a good attention span was?
Okay. She did it in five seconds. She gave you that [inaudible 00:18:09] and the project came back perfect. I’m good with that. I don’t need her to do it the exact same way I would. I just want it done and done to the specifications that I’ve given. And you guys have learned or cracked the code for multitasking. I will never forget I had this intern. She was amazing, but I thought she wasn’t listening to me, because she had this pink phone. It was beautiful. This little pink phone, it was attached to her ear and I’m talking to her and she’s talking to them and she’s listening to me and the project came back perfect. She never put that phone down. And I didn’t ask her to.
Wow. That’s amazing.
Yeah. But I was a different kind of supervisor from that perspective, because I know that I got some pushback. It was like, “She should’ve put the phone down.” I was like, “Why? The project came back perfect. I didn’t need her to do it the way that you think it should be done.”
Absolutely. Yeah. Everyone has a different way of accomplishing, as long as you get the finished product at the end, I guess. Yeah. There’s many paths to get to the same location in the end.
If you’re a company and you’re looking to make your hiring process, services, products, or environment accessible to people with disabilities, WID is here to make that happen. 1.3 billion people across the globe have a disability. And this accounts for $1.9 trillion in disposable income each year. Not only is making your products accessible for people with disabilities the right thing to do, it’s also the best thing to do for your business. So consult with us today by reaching out to the director of our accessibility solutions program Kat Zigmont at email@example.com. We look forward to doing business with you.
I’m curious to hear how and when did you get involved in unconscious bias and disability inclusion space? How and when did that took place?
I kind of always been in this world. My mother is a special education teacher here with D.C. Public Schools. So I have always been aware just about in my community, in general, what unconscious bias looked like from a racial perspective, from a female perspective and then from a learning and communication perspective. It was very important to her that we understood early on that everybody is different and that’s a beautiful thing. But, unfortunately, not everybody’s going to see it that way and that’s not sometimes due to their own fault. That might just be how they are being raised. The information that they’re receiving from friends, family, and the media. But we had to put forth a different type of information process, be willing to ask those questions, be willing to have that conversation.
And so from there I’m lucky enough to have gone to Howard University. So as a proud Bison, they work really hard to make sure that we come out as global citizens and that we know that these things exist, but our job is to have those uncomfortable conversations and address unconscious and implicit bias in every way that we can.
Absolutely. Yeah. It’s amazing. I always say, “We are the sum of our own life experiences.” And I think oftentimes our individual lived experiences is what ends up coloring what we end up doing for a living. Especially in the non-profit space, it’s really important to draw from our own personal experiences, for sure.
And that’s why we need to have diverse conversations and inclusion at the table to make sure that these conversations are had. If you have the same perspective across the board, then the unconscious bias will just continue to bleed into everything. It’ll bleed into your outreach. It will bleed into your programming. It’ll bleed into your ones and zeros. Everybody thinks that the ones and zeros are going to save all. They can’t, because they’re written by a person. And who are those people on that team? And what do they look like? And what are, as you said, the sum of their experiences?
Eradicating unconscious bias in the workforce, why is that an issue that businesses, corporations, why is that something that they should prioritize?
I know that we sometimes forget that we do live in a capitalist society.
It’s hard to forget.
I wish it was different.
I don’t forget, personally.
We have to understand that the goal of capitalism is to make money. It is at the end of the day. So why should businesses, in particular, prioritize addressing unconscious bias is because this underlying issue is affecting your bottom line. You may not understand it. You may not see it, but I guarantee you it is affecting your bottom line by all these 20%. You are missing out on opportunities. You’re dealing with a whole lot of unnecessary lawsuits. It is affecting your bottom line. And then the more altruistic reason really is, I think most of our companies, because we are run by people, you want to be a global citizen. You don’t want to cause pain, and harm, and hurt, because we all have to answer to somebody later. But those would be my two main reasons why we need to focus on eradicating unconscious and implicit bias, because it’s affecting your bottom line and because you want to be a better global citizen.
Absolutely. And I’m curious, and only if you feel comfortable with sharing, did you have personal experiences with unconscious bias in the workforce?
Unfortunately, yes. I am an African-American female with a disability and an Arabic name. So there was a lot of layers that I do have to constantly maneuver through to make sure that I’m addressing, either directly or indirectly, anybody’s unconscious bias. Whether that’s making sure that I’ve done the project, not just to their specifications, but have gone beyond, but also to make sure that I can answer or address any questions or concerns they may or may not have. And also manage my own wellbeing and health with regards to that. Because the stress and the anxiety can eventually get to everybody
I totally agree with you. I would love to hear, though, about your, I know you have a foundation for MS. I would love to hear more about what you have going on there and what inspired you to found that. And, yeah, I’d love to hear all about that.
Okay. I thank you so much for that. And, yes, we have a foundation. It’s called the Martin M.S. Alliance and we focus on multiple sclerosis in communities of color, particularly. I was diagnosed with MS when I was 16 and I realized that there was not a lot of research and, or outreach in communities of color in regards to multiple sclerosis. There was a bias, implicit and, or directly, not just from the general public, but from the medical community that MS does not affect people of color. And you had one or two. At that point we had Richard Pryor, we had Montel Williams who were the celebrity faces of color with multiple sclerosis, but there wasn’t much else out there. So I started the foundation to really address that, not just in the community, giving voice to individuals that are living with MS and their family and friends, because it touches everybody differently.
So once one person’s been touched, then that whole community becomes touched. But also having those conversations with medical professionals, so that they can do better early detection. Because even though MS has no cause and no cure right now, early detection and proper treatment can greatly improve one’s quality of life. So what we’re doing right now is Pride. So, unfortunately, we don’t get any parades this year. I would be downtown with my booth and talking about multiple sclerosis in the community with our ADA umbrellas. But this year, we’re just mainly doing a whole lot of outreach and webinars online and, hopefully, everybody can join us and see what we’re working on. So we’ve got Pride taking place and this is going to be our first year looking at disability images in film with the Tribeca Film Festival. And that has been so exciting and so exhausting.
There’s so much good stuff to take in, but that’s what we’re working on right now with the foundation.
But that you so much for asking.
Absolutely, yes. Where can people keep up with what you guys have going on at the foundation?
Absolutely. Please reach out to us. Our website is, I have two, because I to keep everything as fluid as possible. You can find us at manyfacesofms.org, also at the martinmsfoundation.org. And you can find us @kamilahproctor on all the platforms, Facebook, IG, Twitter. And our YouTube channel is up right now but, unfortunately, we don’t have any new postings at this point. But with the Tribeca Film Festival, we are hoping to have some really great new interviews to be posted to our YouTube channel, which is also at manyfacesofms.org.
That’s so exciting. I’m definitely going to be following you guys everywhere. I’m so excited for everything that you have going on.
Absolutely. Absolutely. Are there any closing thoughts, famous last words that you would to leave our audience with regarding unconscious bias in the workforce and why we should all, collectively, as a community really fight to eradicate it?
Yeah. Closing thoughts. I just want to leave everybody thinking that I know that it’s stressful right now, and I know that we are facing a lot of unknowns and transitional feelings. And those little pieces of unconscious bias are going to start to creep up. I want you to do very well to address that, internally and externally, so that you’re not missing out on a great opportunity, a wonderful partnership, a new friend, a new business colleague, or a new employee that can turn your business around in ways that you can’t even imagine. Address those within yourselves, push them to the side, be brave and take a moment to say, “You know what? I’m not going to listen to that voice. I’m going to try something new.”
Absolutely. We all have work to do as a society, for sure. We all have work to do. Well, it was so exciting and such a pleasure. I had so much fun chatting with you today. Thank you so much for being a guest.
Ms. Ashley, I truly appreciate you. Thank you for the work that you’re doing. Thank you for having me and let’s do this again.
Absolutely. Yes. Absolutely. What’s a wonderful and important conversation. I was so happy to have the opportunity to have this much-needed conversation with Kamilah. And unconscious bias, it definitely is so much more harmful than other biases, I think, because it’s perpetrated without the perpetrator actually being aware of their actions. I think when we experienced more explicit forms of bias, it’s easier to call out, but the biases that are ingrained within people by, and I love how Kamilah puts it, friends, family, and the media have really significant ramifications on people with disabilities. And this is why it’s so important to listen when people with disabilities, when people of color say that they’re experiencing discrimination. We live in a society that is so systemically ablest, racist, sexist, and so on and so forth. And we all are influenced by it, whether we realize it or not.
So listening, learning, and including people with disabilities, people of color, women, LGBTQ+ people, non-gender conforming people. That’s the only way that businesses and corporations can thrive and really reach the entire market share that they’re trying to reach and that we as a society can truly achieve equity. So thank you so, so much for tuning in. As always, you can find transcripts and American sign language interpretations for today’s episode and all of our past episodes on our website at http://www.wid.org/whats-up-wid. And as always, to paraphrase the words of one of our founders, Ed Roberts, we need to get out there and change the old attitudes, so we can build forward better. Thank you so much once again.
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:
Disaster Risk Reduction, Humanitarian Action and Climate Justice for Resilience and Sustainability;
Accessibility and Universal Design Solutions; and,
Policies, Systems and Tools for Global Community Inclusion
WID’s is also known for 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 and global leaders in the disability rights field as well as in industry, government, and human services. WID’s commitment to intersectionality and eliminating systematic oppression centers our strategic priorities on lifting up BIPOC and multiply-marginalized people with disabilities. This enables WID to bring a pan-disability, intersectional perspective to everything we do. Information on WID’s programs can be found at www.wid.org.
POSITION SUMMARY: We are looking for an energetic and savvy Business Development rock star with an innate ability to identify opportunities, open doors, and successfully close revenue-generating opportunities. This person will report directly to the Senior Director, Marketing and Communications.
This person will perform duties related to nonprofit fundraising, corporate, federal, state, and local agency business development (sales), project and relationship management, including, but not limited to, assisting in the creation of and executing a fundraising and business development strategy for WID, as well as donor and grant research, engagement, and tracking.
HOURS: 40 hours/week
Please note this job announcement is not designed to cover or contain a comprehensive listing of all the activities, duties, or responsibilities that are required of the employee for this job. Duties, responsibilities, and activities may change at any time with or without notice.
Assist with the creation and implementation of the organizational business development plan that incorporates a range of fundraising strategies, including annual appeals, major donors, grants, corporate and individual appeal efforts, events, and business development outreach to corporations, foundations, US and global government and non-government agencies and businesses promoting our consulting services and tools, such as Disability Benefits 101 (DB101) and Housing Benefits 101 (HB101).
Create and implement fundraising opportunities, grant research and track and inform team(s) of research and potential areas to cultivate external partnerships.
Contact targeted prospects through cold calling and emailing.
Generate regular streams of new business by providing exemplary customer service and promoting WID’s value to prospective clients.
Develop a solid understanding of the client’s needs and translate WID’s value propositions into all communications.
Determine decision-makers at companies, state/local governmental agencies and other organizations to identify their specific needs, purchasing plans, and decision criteria.
Coordinate funding proposal projects, including writing and submitting high-quality grant proposal narratives, applications, and supporting documents in collaboration with internal and external stakeholders.
Partner with subject matter experts to translate technical solutions into well-written, clearly articulated, compelling, and compliant proposal documents.
Maintain a line of communication with internal stakeholders (e.g., relationship managers, peers, consultants) and/or the target funder as relevant for proposal development.
Support evaluation of the proposal development process and develop corrective strategies as needed.
Outstanding writing and oral communication skills.
Minimum of three years of experience in nonprofit fundraising, including writing competitive foundation proposals for an organization with an annual budget of at least $3 million.
At least three years of business development (sales) experience with proven ability to develop and nurture a customer sales funnel.
Experience coordinating large, complex state, federal government, and international foundation proposals.
Bachelor’s degree or equivalent experience.
Possess the ability and confidence to engage prospects and customers, evoke interest in WID solutions, qualify and disqualify potential customers, think quickly, and apply value propositions to specific customer scenarios and a variety of buyers.
Willingness to exercise cold calling and emailing targeted client prospects and comfortable with being measured by customer acquisition, sales quotas, and other designated measures.
Demonstrated ability to manage priorities and meet multiple deadlines.
Self-motivation and the ability to take initiative and work as part of a team.
Has tenacity and a hunter’s mentality.
Strong work ethic, analytical, research, and problem-solving skills.
Proven record of achievement in delivering sales results and developing collaborative relationships.
A strong understanding of the business development (selling) process is required with experience prospecting and closing new business.
Understand, promote, and leverage the organization’s products and service offerings as part of an overall value proposition. Create in-depth prospect profiles, build relationships with decision-makers, understand client needs, develop and present proposals to secure new business.
Experience presenting to diverse audiences, including some or all of the following: internal and external executives, donors, members, board members, and the public or equivalent.
Experience analyzing and interpreting data coupled with strong research skills.
Experience with US-based and/or multilateral public funding agencies.
A proven track record of being a business development/sales rock star generating significant revenue for an organization.
Personal or professional experience with disability, disability rights, or the larger social justice movement.
Experience conducting successful donor campaigns and events and a proven track record of growing donations.
Experience responding to and being awarded a significant win-rate percentage of foundation, state, and/or federal RFPs.
Brings an existing network relevant to the industry, including with funding agencies.
Experience using CRMs for tracking activities and, most importantly, forecasting development efforts.
STATUS: Exempt, generous benefits package
COMPENSATION: Commensurate with experience
Send resume, cover letter, writing sample, salary requirements, and references to World Institute on Disability; EMAIL: Josephine Schallehn, Josephine@wid.org(WID acknowledges receipt of applications by email only)
Application Deadline: Open until Filled
Proposed Start Date: July – August 2021
Address reasonable accommodation requests for the application/interview process to firstname.lastname@example.org.
WID is interested in remote candidates; applicants who are authorized to work in the US are encouraged to apply.
WID reimburses employees at a flat rate for a set portion of their telecommunication costs via payroll.
WID does not 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.
>> Ashley Inkumsah: Hello everyone and welcome back to What’s Up WID, the World Institute on Disability, biweekly podcast, where we discuss what’s up in the disability community, across the globe. I’m your host Ashley Inkumsah and I’m so excited for you to hear or watch or read the conversation I had with the one and only Debra Ruh earlier this week.
Ashley Inkumsah: Debra has been a global disability inclusion strategist for the past 20 years. She’s a market influencer and internationally recognized keynote speaker. She’s an author, branding expert and an entrepreneur. She also happens to be a board officer on WID’s board of directors. She is the CEO and founder of Ruh Global Impact. She’s also the host of an online program called Human Potential at Work.
Ashley Inkumsah: Now, Debra and I had quite the fruitful conversation about why businesses, corporations and governments need to prioritize disability inclusion. As I always say, grab yourself your favorite snack. My personal go-to snack is brie and crackers, perhaps with a glass of wine, but grab yourself whatever your snack of choice may be and sit back and relax and enjoy my wonderful conversation with the fabulous Debra Ruh.
Ashley Inkumsah: Well first let me just say, I think you’re doing some absolutely amazing work in the realm of disability inclusion and I’m so, so excited to speak with you today. My first question for all of our guests is always, how are you doing? How are you feeling today?
>> Debra Ruh: Well, thank you so much for having me on this show, on this podcast. I’m very excited that WID has a podcast now. I’m doing fine. My husband is walking a very difficult path with dementia, and we often talk about people with disabilities and that we could age into disabilities. And he’s one of those individuals where that is happened. So it’s… The word of the day I think for many of us is, wow, it’s intense. So let’s be kind to each other and let us be the way forward for each other. So, but thank you for asking. But Ashley, how are you doing?
>> Ashley Inkumsah: Well, thank you for asking me. First, I want to respond to how you’re doing. I always say that disability is one thing that can happen to everyone. Sometimes it might be hard for other people to relate to other people’s plights, but disability is the one thing that literally intersects every facet of our livelihood. So I totally feel you and understand you on that. And I feel like there’s always that pressure to say that you’re doing great, but I’m glad that you are genuine with how you were really feeling. And I really appreciate you sharing that with me.
>> Debra Ruh: I think we have to be right now, Ashley, because what I know is everybody that I’m talking to is traumatized and it’s not going to let up anytime soon. So we just have to I think take the time to be a little bit kinder and nicer with each other.
>> Ashley Inkumsah: Absolutely. I think mental health… I think that this past year has very revelatory as it relates to our mental health and our mental hygiene, just taking care of ourselves and not feeling like we have to be strong all the time. It’s been challenging. So it’s okay to say it has been and be honest, I think that’s where the healing starts.
>> Debra Ruh: I agree. Well said, well said.
>> Ashley Inkumsah: Yeah. And as far as how I’m doing I think I’ve been doing pretty good. Again, as good as we can be given our circumstances, I think that things are looking up and things are getting better, but I have been saying that we want to build forward better. We don’t want to go back to what we had before as it relates to the disability community for sure. We want to learn from the past year and move forward. So that’s kind of the head space that I’ve been in.
>> Debra Ruh: Right. I agree. And even though it’s so hard, it’s so hard. I don’t want us to go back to what we were doing, killing people with darker skin than mine in the streets. So I would rather walk this intensity and try to get it better, right for more individuals than go back and see the… whatever the way it was. We can’t go back anyway. But I think we just have to be deliberate about changing the world so that people can be more included and we stop deciding that people are throw away because they have a darker color skin or they love the wrong person, or they have a disability. It’s ridiculous what we do about… how we treat people.
>> Ashley Inkumsah: Absolutely. I think we’re certainly… we’ve grown. We’re much better than we have been in past years, but we have a ways to go. Again, It’s been a revelatory past year and it really has revealed that yeah, we have a ways to go as it relates to inclusion for sure. And that’s a great segue to my first question which is, how would you define inclusion for someone who is completely unaware of what disability inclusion is? How would you define what disability inclusion is?
>> Debra Ruh: Well, that’s a great question. And what disability… I think often people don’t know what we’re talking about when we’re talking about disability inclusion. And I know with the work I’ve been doing for a long time, people try to get me in a box and I’m just not going to be in a box. I’m not a square peg in a round hole, or I definitely am a square peg in a round hole, I guess I should say.
Debra Ruh: But if you really want to include people with disabilities then you do that. You include the community, you make sure things are accessible. You make sure that you are focused on inclusive design. You make sure that you are employing people with disabilities. And if they’re not disclosing they have disabilities, you as a corporation, you should really ask yourself why. So you make it safe for people to be able to self identify and talk about who they are and their lived experiences. You make sure that you focus on the intersections because it’s great to talk about disability inclusion, but if you’re not talking about disability inclusion from the lens of the intersections, which you mentioned, black women with disabilities, LGBT members with disabilities, women with disabilities. Looking at all of the many, many, many intersections. What about refugees with disabilities?
Debra Ruh: So I think you have to understand how broad the topic is, and then make sure that you understand we’re also talking about the digital divide and digital inclusion, because if you don’t have access to the internet and I was struggling with that recently. And if you don’t have access to good technology. So I think when people say disability inclusion, sometimes they forget that there’s a lot of moving parts. And that’s why it’s so important to work with DPOs or disability persons organizations like WID.
>> Ashley Inkumsah: Right? Yeah. I absolutely agree with you. And I’m so glad you brought up the intersectionality. In all social justice movements, I feel like there is no movement without including… Like in the Black Lives Matter movement, there’s no movement without including black women or black trans individuals. In every single movement that there is, we really have to include people who are multiply marginalized within that movement. So I really am appreciative that you brought up those intersections, for sure.
>> Debra Ruh: Yes. And I’ll make one comment and I’m probably not going to get some my numbers correct. But I believe that I’ll be able to make the point. When you look at gender issues, which I’m also very interested in because people will say that women are the largest minority group in the world, which by the way is not true. Women are a majority, there are more women in the world than men, but we’re treated like a minority group. So that’s it. So, and I believe in getting behind supporting the Black Lives Matter intersections, all of this, because we’re stronger together. When you look at… if you just look at it from a gender issue and there are major issues, so a man, and looking at this from the United States, I do a lot of work globally, but so you just look at $1.
Debra Ruh: So if a man is making a dollar, then I, as a Caucasian white woman, I make about 70 cents on that dollar. Ooh, that’s bad. But when you start looking at my sisters in the other groups, my sisters, that… My black sisters. Well, they make like 50 cents on the dollar. And then you start looking and you just go down and it’s the Latinos with disabilities. But you start getting to women with disabilities and it’s ridiculous. On the average, it’s like 20 cents on the dollar. So as you move through our gender intersections, it gets worse for you if you… And I don’t even understand why we decided that somebody with lighter color skin is better than somebody with darker color skin. But as you said earlier on, there’s a lot of things we need to correct in society. And these are just a few, but if it’s looking at it from that gender, you can see the disparities get worse and worse and worse and worse.
>> Ashley Inkumsah: I think ableism and sexism and misogyny and racism, they’ve just had extremely robust marketing campaigns where it’s literally infected literally every facet of society, whether it’s implicit or explicit, it’s 100% infected every facet of our society.
>> Debra Ruh: Oh, well said. And it’s amazing sometimes now that we are actually digging into it, it just is amazing. I always knew there were problems with housing and problems with that. But I had no idea how bad it was for other people. I just had no idea. And one time Ashley, I have a large social media presence, and one day something was trending on Twitter and it was white privilege. And I thought, “Go in…. Don’t go in there Debora, don’t. And I thought, “No, I have to go in.” And so I looked stupid at comments that people were making, “Oh, what do I do with my white privileges? I got out of getting a ticket.” Okay. Whatever.
Debra Ruh: It’s some stupid comments, but I went in and I said, “Well, what I’m doing with my white privilege is I’m making sure the door is wide open and I’m bracing it open. And I’m saying, come on in, because we all have privilege being born in a developed country. That we all are privileged if you’re living in the United States, but what are you doing with that privilege to help others that aren’t privileged?” And that ,I think, that’s the opportunity that we all have.
>> Ashley Inkumsah: Yeah. That’s the age old question. What are we doing with our privilege? And I think allyship is really important, especially within the disability community. We need people who are non-disabled, who are allies, unfortunately, because people who are non-disabled… Our privilege that allyship to stand or roll or sit beside one another. For sure. Absolutely.
Debra Ruh: I agree. I agree.
>> Ashley Inkumsah: How, and when did you get involved in the disability inclusion space?
>> Debra Ruh: Great question. I believe that I got involved 34 years ago when my daughter was born with Down syndrome because I remember right after I gave birth to her, looking at her. And by the way, thinking that she was the most beautiful baby ever born, which I still agree with, but I had this quiet little thought flipped through my mind that said this, she looks like she has Down syndrome. And I remember thinking, what does that even mean? I had never met anybody with Down syndrome. I’d seen the kids going in the special classes, but I ignored that thought. And four months later the doctors diagnosed her with Down syndrome, but I believe that’s when I joined the community. What I didn’t know was I was already part of the community with my ADHD and anxiety. I just didn’t know anything about it.
Debra Ruh: I didn’t think at the time I’d met anybody with a disability, which so many people are like that. What I realized as I moved into the field, really aggressively into the field was I was surrounded by imperfect humans. And by the way, I wanted to be around imperfect humans because who’s perfect? Nobody’s perfect. And so, but I was in the banking industry and I was at an executive level in the banking industry. And I was trying to help, I was actually employing people with disabilities because we had programs to do that. But when my daughter reached middle school in, it would have been about 1998 or something like that. But I just was so surprised how there was no plans for her joining the workforce at all. And I thought, “But wait a minute, she can contribute.” So, that’s when I got very involved. That’s when I decided to quit my well-paid banking position and create access where I committed to employing people with disabilities.
Debra Ruh: I also did not… And we were a technology company focused on accessibility, but I didn’t want to be a, for a nonprofit. I wanted to prove I could be a for-profit and stand toe to toe with other people that weren’t employing people with disabilities. We now would call that a social enterprise. So I did that around 2000, but I would say that I joined the community in 1986 when my precious daughter was born.
>> Ashley Inkumsah: Amazing. It’s amazing how our lived experiences go on to color what we end up dedicating our lives to. That is wonderful.
>> Debra Ruh: I just always thought I was here for a reason. And so when my daughter was born, when they told me she had Down syndrome, I thought, “Okay, all right. I want to help.” And yeah. And then my son was born 15 months later and I realized, okay, I also have to navigate two children, but I think you’re right. Our lived experiences can help us navigate where we’re going.
>> Ashley Inkumsah: Absolutely. What kinds of challenges have you seen when it comes to corporations, working with corporations as they try to incorporate disability inclusion initiatives within their organizations?
>> Debra Ruh: Well, I would say that the problems have shifted, but early on, they just did not understand what we were talking about. So we spent a lot of time talking about the business of including people with disabilities, employees with disabilities. And so, but now what I see happening, and also we were seeing a lot, and this was happening mainly in the states, but we saw a lot of… I’m just going to focus on accessibility because I don’t want to get sued. And so I saw them and I don’t blame them. Sometimes when you look at a problem, you’ve got to see where your risks are and you’ve got to address that first.
Debra Ruh:n But I think what I continue to see is corporations just don’t understand the moving parts. They don’t understand that if you don’t make your systems accessible, that we can’t even apply for your jobs, they don’t understand what would you… When we’re talking about disabilities that about 80% of the disability population have invisible or hidden disabilities. And you don’t even know for sure if they’re a person with disability and they don’t know how to encourage us to self-disclose because I’m a person with hidden disabilities. I’m very vocal about it. I’m a person with ADHD and severe depression and anxiety, which this intensity right now is not helping, but oh well, but so the corporations don’t understand. They don’t understand the complexity of inclusion, of disability inclusion. And then also they’re confused because they’re having diversity and inclusion conversations in other ways like with our Black Lives Matter or with LGBT or women and gender, or Asian Americans, Latin Americans, but they don’t understand the intersections.
Debra Ruh: And often diversity groups don’t understand the intersections. Some of them are starting to, but I remember years ,this was about three, four years ago. So a long time ago, I was at a SHRM conference, the Society of Human Resource Management, which is really trying to help us. And there was a diversity and inclusion and they were saying, “So what is part of diversity inclusion?” And I just sat and I waited. I wanted to see how long we were going to go be before our community was included. And it got to 15 categories and still nobody had mentioned. And so I raised my hand and they’re like, ” Oh yeah, yeah.” But that’s what we see as we, the disability community is often not even being included in the diversity inclusion conversations.
>> Ashley Inkumsah: It’s so true. I feel like we are having more and more conversations about race and about gender disparities. But for some reason it feels like the disability conversation has been, I don’t know, somehow left on the sidelines and the social justice movement hasn’t caught up to it yet.
>> Debra Ruh: Yes. Agree, agree. And you know, I love the term social justice and that’s what we use as well. And you look at things like we’re talking about, you start digging into the problems and you’re just stunned. But if you look at our prison systems where we are totally warehousing a lot of brown and black people, but 65% of prison inmates have disabilities, why would we do that? First of all, why would we put people in jail because of the color of their skin, which that is happening, that is totally happening. But at the same time, how can we not have the empathy that these people are in trouble? And we’re going to jail them? Anyway, things like that.
Debra Ruh: I won’t get caught up in that drama. I don’t understand how we can say we’re a humane society and then do what we’re doing in the States and our prison systems. But yeah,
>> Ashley Inkumsah: A whole other can of worms for sure.
Debra Ruh: That’s right. That’s right. I’ll be careful to stay on track.
>> Ashley Inkumsah: So how have you helped corporations to overcome these challenges that they face?
>> Debra Ruh: Well, I’ve been working on helping corporations include people with disabilities since the early two thousands. And how I started helping was with accessibility. I really believe in accessibility, all technology needs to be accessible. The buildings need to be accessible. And then I started really focusing on this from a global perspective. It’s like, okay, but it’s great that you’re including people with disabilities in the United States or in the United Kingdom, or maybe in Australia, but you need to do it… corporation, in all of your geo footprint.
Debra Ruh: So why aren’t you doing in Bangladesh? Why aren’t you doing it in Poland? Why are… And so sometimes I feel like I’m just being the nag of the industry. I’m the mother nag going, “Come on, everybody’s got to be included. Come on.”
>> Ashley Inkumsah: We need the disruption.
>> Debra Ruh: We do need the disruption. But what I have done, which is relatively new over, it’s been about four months now, is I decided to create a global nonprofit called Billion Strong, very proud that WID of course, has joined this effort being a global advisor. But I… And I’m saying, I, and then I’m going to switch to we because you can’t do anything with an I, but I really wanted… I was seeing things like the Valuable 500 happening. 500 CEOs committing to include us. And I thought, “Well, wait a minute. If our community doesn’t come out and self identify in a way then they’re not going to be able to find us.”
Debra Ruh: So could we create an identity organization, once again, being very mindful and deliberate about including the intersections of those identity organizations, like the LGBTs, the Black Lives Matter and others, but also do it from a global perspective because solving it in the U.S. is great, but we’ve got to solve it in the world. And so I’ve been able to pull in so far 58 countries, hundreds of advisors, but at the same time I’m going to make another point. It’s also very, very important to be very deliberate right now, because as I said, Ashley, I am a person with disabilities but you wouldn’t know it by looking at me if you could see. Now, I’m also a mother that has a grown daughter that was born with Down syndrome. I’m also a wife that has a husband that has aged into dementia, which is sad, I’m so many different things, right?
Debra Ruh: But what I decided to do with this organization, we created Billion Strong, which is billion-strong.org was not be the CEO of the organization. Instead I selected, and with my team, we selected Dr. LaMondre Pough to be the CEO. And the reason why is because he has lived experiences as a black American. So he’s, African-American, he also has lived experience growing up in the south of the United States, which is the states that fought to not free the slaves and still there’s a lot of… there’s prejudices everywhere, but it’s a little bit worse I perceive sometimes in the part of the country that I was born. He also is a man with lived experiences with disabilities. He was born with muscular dystrophy and his mother was told to institutionalize him. His mother was told he wouldn’t live past five.
Debra Ruh: Well, he just celebrated his birthday. I think he’s 47. He’s got this-
>> Ashley Inkumsah: Sounds amazing.
>> Debra Ruh: Yes he’s an amazing leader too. He’s such an amazing leader, but he has not only lived experiences with disabilities. He’s a wheelchair user. He has limited use of his upper and lower body. But let me tell you what he is. He’s an amazing, talented man that is going to change the world. And all of us are going to get behind him and support him. But representation right now matters more than ever before. If you have a chance to hire somebody and you have three qualified candidates, and one of them is a black woman with disabilities, you should select the black woman with disabilities. Let’s just be more deliberate about including the disenfranchised people, because we’re not going to get past this if we’re not more deliberate about inclusion right now.
Debra Ruh: It’s not that I don’t want white people included, of course I do. But we’ve disenfranchised people of color too long. People that are brown and black, people with disabilities. Yeah. LGBT community. So it… right now, representation and intersections also matter. And I know you agree with that, Ashley.
>> Ashley Inkumsah: Yes, absolutely. I think we often get into this conversation about identity politics, this term about identity politics. And are you including this person because they’re, so-called qualified or not qualified, or just because of the identity that they are personalized or ascribed to. And I think it’s really important what you said that people of color, people with disabilities have historically not been given a platform, not been given opportunities to be employed, to have an education, to exist. And so many sectors of our country and really of our whole entire world. So, it’s really important to actively and intentionally want to include them in the conversation.
>> Debra Ruh: Yes, yes. And another thing that I saw happening, Ashley, which was bothering me, I love that the corporations are starting to employ people with disabilities. I love it. But I started noticing, especially during the pandemic, I had quite a few younger people, now I’m in my sixties, but younger people. So I started seeing a trend. I had about 15 different ones, all separate that… most of them were women. Most of them, except one had lived experience with disabilities. A lot of them were part of the intersectionalities. They all worked for major multinational corporations. But what they all were also saying was that they got hired, but then they sort of got stuck. They weren’t being promoted. They weren’t getting professional development and that feels a little bit like tokenism.
>> Ashley Inkumsah: Exactly.
>> Debra Ruh: So it’s like, “Hmm, did you hire me? Because…” Right? And so that’s another reason why we created Billion Strong. I mean, I still have Ruh Global Impact and we are a corporate. We help corporations all over the world, understand the nuances of this, but I really, really felt that we needed to have a global identity organization.
>> Ashley Inkumsah: Why do you think it is that disability inclusion tends to be so lacking in society and corporations and marketing endeavors of corporations? Why do you think that is?
>> Debra Ruh: Well, I think a lot of the reason is because the community itself has not identified. We don’t… I think we could learn so much from the LGBT community, for example, that they took all their different parts. They’re still doing it and come together. You know, I… we can learn a lot from the LGBT community. It’s really LGBTQIA plus because they’re figuring out their identity.
>> Debra Ruh: And they have been told by society and by religious doctrine that they’re broken and that they’re… But they came together with pride and we have not done that at the disability community level. We haven’t. I think we need to come together with pride and say, “I’m proud to be a Caucasian woman, a white woman with lived experiences with disabilities. I’m proud of my lived experience.” And we also need to say Ashley, that having a disability doesn’t make us broken. It actually can make us very sexy. So how can we change the dynamics? Because right now, when a child… when my daughter was born with Down syndrome, people didn’t congratulate me on having my beautiful baby girl. People were feeling sorry for me. So it’s not a tragedy to be… have a disability society is the one that makes it a tragedy.
>> Ashley Inkumsah: Absolutely. I was just saying on our last episode, how people with disabilities have to do so much to fit into a world that was not built for them when it should be the other way around. And it’s actually the same. And I’m really into the body acceptance movement and like anti diet culture movement. And it’s the same way that women, we, as women are often trying to fit ourselves into a size two dress, whereas designers should be making clothing that fits all of our different, beautiful bodies. You know? So it’s the same thing with the disability community.
>> Debra Ruh: And once again, it’s human beings telling to other human beings they’re not good enough. You’re not pretty enough. It’s ridiculous. We have got to stop discounting people. We have to stop it.
>> Ashley Inkumsah: Absolutely. We have to do better as a society, for sure. Why do you think that governments and corporations and society as a whole… why is it so important that that people with disabilities are included in their planning and overall business practices?
>> Debra Ruh: Well, in the first place, if you want to hire young people, period, you better do it because the younger generations are not going to put up with this anymore. The younger generations have out, we won’t work for you. Thank goodness for the younger generations.
>> Ashley Inkumsah: Absolutely, the Gen Z kids are really the… they are the best that there’s ever been. I’ve been saying I’m kind of jealous of that myself.
>> Debra Ruh: Whoa. And they’re saying, “We won’t work for you. We won’t buy from you. And if we are working for you, we will walk out on you if you are not including us.” And so if you want to be an employer of choice, you better be paying attention in hiring people with disabilities and other diverse groups. So some governments and corporations, they don’t realize society has changed. Some older generations don’t realize it, but it has.
Debra Ruh: And the younger people are not going to put up with it. So you want to be considered a leader, stop stealing our data, stop being inappropriate, stop making money. Everything that you’re focused on, make sure that you’re looking at… We want you to make money, but you also need to do social good. And you need to have a diverse workforce that includes people with disabilities and we are watching. And so I think the number one thing that’s going to change everything are the young people. They’re not going to put up with it anymore.
>> Ashley Inkumsah: Thank you. Thank you. Absolutely. Those Gen Z kids are going to give them a run for their money. That is for sure. And it’s amazing. I love to see it. What lessons would you say that you’ve learned along the way that you can share with other businesses and NGOs and corporations that might be still on the fence as to whether or not to include people with disabilities and disability inclusion as a whole?
>> Debra Ruh: Well, once again, you have no choice. You have to include people with disabilities. And by the way, if you don’t, we’re going to continue to talk about your brand and the community is going to… Once again, we’re getting together, like with Billion Strong. We already have strong leadership groups like WID and National Organization on Disability and the Valuable 500. But when you get this identity organization together and then others will join. If you don’t include us, we’re going to talk about it. So I mean, society is going to have to take a stand and we’re going to have to take a stand together, all of us together saying, “By the way, it is not okay that you’re not including brown and black. It’s not okay that you’re not including more LGBT. It is not okay you’re not including women in meaningful ways and it’s not okay.”
Debra Ruh: So the corporations, by the way, do know this is happening. And so did the governments, but they don’t completely know how to proceed. So I think we still have a lot of work to do to make sure they know. For example, something that WID does is they have a great program to help make sure that conferences are fully accessible. So you have to think about that. Yeah. There’s a lot of moving parts, but these corporations, these governments need to be deliberate about working with organizations like the World Institute on Disability because they represent our community and we’re paying attention. We’re paying… And there’s a lot of ways to mess up. But if you’re working with an organization like WID we’ll make sure or Billion Strong or all of us, because there’s so many different moving parts, we will protect you.
Debra Ruh: We’ll help you be successful with this. But if you’re not including us, you can expect the lawsuits to continue. You can expect us to be talking about your brand in negative ways in social media. I’m talking overall. Not me personally. I tried to be real nice with social media.
>> Ashley Inkumsah: Yes, absolutely. Well, like I said, it’s been an awesome, very fruitful conversation for sure. Where can our audience find you? Where can they keep up with all of the amazing work that you’re doing?
>> Debra Ruh: Thank you, Ashley. I’m very visible on social media. And most of my handles are my name, Debra Ruh, D-E-B-R-A R-U-H. I’m on Twitter and Instagram and Twitch and LinkedIn and YouTube. I’m on all of the channels, but also my website is http://www.ruhglobal.com. And that’s… we have a little think tank consulting group, and then Billion Strong is billion-strong.org. And we just started billion-strong.org so there’s not a lot of content on the website because we want the community to help us, but we are proud that WID is a partner of Billion Strong, and I think you’re a great interviewer too Ash. And I do want to bring that in here.
>> Ashley Inkumsah: Thank you. I appreciate it. Well, I actually have one more question actually. My last question for you is what is one piece of advice that you would give and offer to businesses? What’s one piece of advice you would offer as it relates to disability inclusion?
>> Debra Ruh: Well, I think the one piece of advice I would use is make sure that if you have employee resource groups, that you have one for people with disabilities, and if you have other groups see how you can pull those groups together to support each other and support you as a brand. And once again, understand society has changed. And those younger people that are so talented that you’re seeking, they don’t want to work for you if you’re not showing leadership in diversity and inclusion and accessibility. And if you don’t believe that, just go out on social media and they will tell you that. So I would think the one thing that I would recommend is to pay attention to what is happening in society, because it has changed and is going to continue to change.
>> Ashley Inkumsah: Absolutely. I couldn’t have said it any better.
>> Debra Ruh: I’m teaching the world Ashley.
>> Ashley Inkumsah: Yes you are.
>> Ashley Inkumsah: Well, like I said, I mean, this has been an amazing, awesome fruitful conversation. So much to think about, so much actionable things that we need to get out there in our community and really start to create and move the needle forward in disability inclusion for sure. So it’s been a pleasure. It really has been.
>> Debra Ruh: I feel the same way, Ashley, thank you so much.
>> Ashley Inkumsah: What an absolutely great conversation. I mean, I really just had so much fun chatting about why businesses and corporations and governments really need to commit to including employing and advocating for people with disabilities with Debra.
Ashley Inkumsah: It really was awesome to speak with someone who has the shared mission of operationalizing inclusion. Debra is truly so, so incredible. Thank you so, so much for tuning into today’s episode. You can find transcripts and American sign language interpretations for today’s episode and all of our past episodes on our website at http://www.wid.org/whats-up-wid. And as always, our famous last words here on What’s Up WID, to paraphrase one of our directors here, Nicholas Love, and one of our founders, Ed Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you so, so much once again, and I’ll talk to you next time.
Nicholas Love: Welcome to Arizona Disability Benefits 101 Training. In this training, we’ll be going over an overview of DB101. We’ll go through the main sections of the cash and health benefits, as well as programs that support employment and help build assets. We’ll be talking about specific strategies to you utilize DB101 to support an employment decision path.
Arizona Disability Benefits 101 or AZDB101 is a user friendly Arizona-specific digital tool that helps work through the myth and confusion of social security benefits, health care, employment and more. It is your one stop for information resources and tools to motivate guide and support people with disabilities to increase economic security through informed choice in their plan for competitive, integrated employment. DB101 provides equal access to accurate information and resources 24/7, 365 for individuals their circle support and professionals.
>> No need to be an expert on the topic or find an expert. Utilize the easy to navigate later information within DB101 to understand the complexity of benefit program interactions. Utilize the user-friendly work and benefit estimators with the associated content to understand the impact of employment has on public benefit and health care DB101 is a safe harbor there is no private identifying information giving individuals the confidence to explore employment without fear.
Throughout DB101 is access to local state and national expert help. DB101 empowers individuals and their circle supports and professionals to be able to ease the fears to be able to engage in a productive employment discussion. Names can be misleading. DB101 is more than just benefits; it’s an integrative employment tool that supports the full spectrum of employment services DB101 contents and tools cover employment supports resources and tools healthcare options asset building and financial empowerment and higher education.
>> There’s even a section specifically for youth and parents the independent living philosophy is carried throughout DB101. As an employment professional you can utilize DB101 in your everyday business practices to increase the effectiveness of services. This isn’t an additional task. This is support the work you already do. You’re able to get information tools and resources about uncertain topics. Without learning a new skill set you can become a pseudo benefit paraprofessional feeling confident in sharing information and explaining the impact of employment on benefits and then leading individuals to free benefit planning professionals. You’re not dependent on one staff or one agency.
>> DB101 is always available at your fingertips to give you the information you need. Throughout DB101 we promote the employment-first messaging: that all individuals of working age should have employment as their first daily activity. We’re able to assist individuals in engaging more fully in employment services by giving the information they need to ease the fear about employment. AZDB101 can be accessed on any mobile device at http://www.az.DB101.org. Now let’s look at DB101 Arizona. DB101 is available to anyone with internet access. There is no password or restrictions there is no need to register to utilize any of the tools or access to any of the articles and AZDB101. But by registering it allows us to collect additional analytics to be able to help with the promotion and advancement of AZDB101.
You also have access by registering and signing in to My DB 101. My DB101 allows you to collect your favorite articles and tools and all your saved estimator sessions. I’m currently on the homepage and if I click myDB101 now without being signed in, it explains what MyDB101is and gives you an opportunity to sign and register there to access it. You can also do the same at the top of the page, so let’s register simply put in your email create a password. Confirm that password.
>> And choose the organization for which you belong in this case it’ll be RSA. Hit submit and you’re now registered so every time you go into my into DB 101, you would like to sign in, simply put in in your email and password. Now when I click MYDB 101 I have all my articles and my favorite tools as well as all my saved sessions that save automatically to My DB 101. You can see that I’m signed in because my email is at the top This allows you to take your little mini myDB101 toolbox with you on any device in which you access DB101.
On the homepage, next to the sign in and register functions that you use for my DB101 is the ability to change the full site into Spanish. With a simple click of en Español, AZ DB101 is translated into full Spanish translation. This is true translation and not a Google translation. And go back to English with a simple click.
>> These functions are right above the search bar. You can simply put in any topic that you’re interested in, like housing, do search and be able to find information resources and tools within AZ DB101. Along the top panel, you have quick access to Home, Work & Benefits, Programs, Youth, and My DB101. Let’s take a tour of the homepage. Our first panel is how work and benefits go together. There are three articles that have been pulled out, information on benefits that support work, programs to help you find work and ways to save money. By clicking on all work and benefit, you’ll be able to access to all the information.
>> Within the work and benefits section, pull out another article, helping people who are interested in going to work. Then we have a section on going to work, where it helps people make work part of their plan and another section about helping them earn more money. We’ll be going through these articles in just a little bit. Back to the homepage. The second panel is our benefit planning estimators. We have three estimators within AZ DB101. There’s benefits and works for individuals over the age of 18 receiving SSI or SSDI. School and work for those under the age of 18, who are only receiving SSI, and AHCCCS Freedom Work, which is our Medicaid buy-in. There is a special training video, specifically on how to utilize these estimators. We will go into them briefly during this training.
>> The next panel is information about cash and health programs. Three articles that are pulled out are finding the right health care coverage for you SSI and SSDI. By clicking in all programs, you’ll be able to have another access to the Benefits and Work Estimator. We’ll also have information about cash benefits and health care coverage. We’ll come back to these also. Back to our homepage, we’re going to scroll down past cash and health programs into young people section. This pulls out three articles talking about options to help you enter into adulthood, information that helps support young people going to work and section for parents. By clicking in on all youth, you’ll able to have access to the School and Work Estimator, and then articles specifically to help young people understand education and work goals to make them part of their plan for their future. There’s also five articles specifically for parents. We’ll come back to these.
>> After the young people section, there’s a section specifically about COVID-19, where you have up-to-date accurate information from state and federal resources. Below that is in the news, which is Twitter feeds that allow you to have information about upcoming trainings from Social Security, or any new information that is seen important for individuals who use DB101. Along the bottom of AZ DB101, you have access back to the homepage, about section and a glossary, where you have access to all definitions used within DB101. Anytime you see a blue word, you should be able to click that and get directly to that glossary section. We also have a feedback section where if there’s any information you feel is inaccurate or you need direct feedback, contact through the feedback. We also have all our access to printing and sharing. And again, feedback is this little comment box.
>> Going back to the top of AZ DB101. You notice as I’ve gone through, this blue question circle has been following me. This is access to additional help. If you need help, you can get help through the Arizona Work Incentive Consultants at Ability360. These are individuals who will be able to answer your questions not only on helping you on DB101, if you have a challenge, a question or need clarification, these are the people who are there to help you. They’re also direct access to the Work Incentive Planning and Assistance free benefit counseling. So you do not have to be an expert on any benefits. These are the people who are going to be there to support you along the way.
>> On the homepage of AZ DB101, you can see how work and benefits go together. In the first panel, there are three articles pulled out, see how benefits support work, finding the programs that help you find work, and saving while working. We’re going to go to the first pulled up article, see how benefits support work. This leads us directly to getting past the myths. These are great articles for helping you become comfortable with sharing information and getting rid of those myths. There are seven basic myths. I can’t work. If I work, I lose my SSI or SSDI. By work, I’m going to lose my benefits. I’m going to lose my disability status. People can’t help me find work. I can’t afford to work. Or my benefits will stop, and I’ll never get them back again. These are some basic fears. If we can get past the basic fear with correct information, we’ll be able to help people move to a more financially empowered life, aka, work.
>> So we can go in and learn about the basics, where it talks about Social Security, those seven myths, why do you need to know this information, and very short paragraphs on what is SSI, what is SSDI and helping people decide if they’re ready even to go to work. You can go into any of these articles and get some basic information. Now, we know one of the main fears is people are fearful of losing their health care benefits. So let’s go into that myth. So if I work, I’ll lose my health benefits. What I love about the myths articles is it’s not just information, it’s actually a script. In the blue box, here, we’ll have a conversation that someone might have had with you, talking about their ongoing health care needs, and then never going to be able to pay for them by themselves. And people tell them, they shouldn’t work. We know this is what people are being told.
>> And in response to this very valid concern about health care, you have a script to follow. Right here, the first paragraph is literally a script for you to read. You can read this until you feel confident with the information you’re providing. So when an individual says I can’t go to work because I’m going to lose my health care, you can come back and read this and tell them, losing your health care benefits can be a huge concern if you’re thinking about going to work. However several programs can help you keep your health care benefits when you go to work. Some jobs will offer employer sponsored health care benefits. But for some people, that may not be enough. Some people may want to also keep their Medicare or their AHCCCS benefits.
>> It then goes on and talks about the importance about knowing the difference between different health care coverages and then pulls out small paragraphs to explain Medicare, Medicare at work, AHCCCS, 1619(b), AHCCCS Freedom to Work programs, and private and public health care coverage. It can then take you into more in depth articles so that you can learn more about it within the healthcare section. But what this does is it gives you enough information to feel confident in sharing what you’re being told. And this section is very helpful for getting specific information right to the point stop people right in their tracks when they start talking about these myths and help you feel confident in sharing and talking about the information.
>> Back on the homepage. In our first panel of see how working benefits go together, we’re going to go into all work and benefit tab. It pulls out an article talking about being interested in work and programs that support work, which leads us right into the basic information to talk about to get to work and work incentives and vocational rehab and one-stop centers. So very specific information on where to find that help and those assistance and supports. Within the work and benefits section underneath the first panel is two sections, one on going to work, learning how to make work part of your plan. And the other is about your money, and how to build your asset and save money. And most people think about people who live in poverty, stating they cannot save money, because they don’t have the money to save. When in fact, these are the people who need to save money. We need to be able to support them and give them the resources to help them move forward.
>> So within going to work section, you have the myth, which we’ve just went through. You also have finding the right job for you, knowing your rights and responsibility, job supports and accommodations, managing your benefits while working and a going to work toolbox. In the going to work section, my favorite article is Finding the Right Job for You. This article has so much information to help people actually think about prepare for going to work. Anyone who’s working with any type of employment services should have this marked as their favorite. So let’s click and add that to our favorites. It’ll now be part of My DB101 as we move forward. Finding the right job for you, we have some basic information about apprenticeships, customize employment, and talk about if you’re ready to go work and then give suggestions based on those simple questions.
>> What Kind of Job is Right for You? Again, my favorite, provides interest inventories, self-assessment and personal inventories to help people understand their interests, their likes, their dislikes. There are quizzes and worksheets that you can be linked to, to help people think about what makes them happy. If you give someone a job … Let me try that differently. If you even help someone get a job, you’re going to help them get another job and another job, and another job. But what we really want to do is we want to help people get a career. And that career comes from the passion they have, the dreams they have. So let’s talk about what really interests them, so that they want to get up and go to work. So these interest inventories are very helpful with that aspect.
>> You can learn about job priorities and overcoming obstacles and a personal inventory worksheet. We talk about self-assessment, and we link you to the program called MyPerfectResume, where you can add information about their work history and be able to create the perfect resume for this individual. Maybe the functional resume because they’ve had gaps in employment. We talk about how to connect to the career one-stops in the career exploration pages, how to talk to career counselors, and how to address your personal needs. There’s a personal needs assessment through the Job Accommodation Network or JAN. We talk about what are reasonable accommodations, and how to request them either in writing or verbally. We provide information from the Americans with Disabilities Act, and there’s also some really good resources from the Arizona Center for Disability Law.
>> We then talk about matching those interests and those strengths that they have with job opportunities. So finding those careers. So going to the O*NET network to connect to find out what are those careers that are out there. A lot of different resources to do that. And then you can even look at the future of those jobs. You can go down to if someone’s interest says that they are interested in working with animals, you can then go and see what are the projection and what are types of different types of jobs of working with animals. And then even take that down to what is the growing area regarding working with animals in let’s say, Tempe. It will be that specific. And we can say, what is the earnings potentials? Because we know that’s an important factor when working with people.
>> So this article itself would be able to provide a complete overview of people’s interest and strength, and then what are careers that match it and what is the projection for those. So how much better would it be instead of going to vocational rehab and say, I want to get a job and vocational rehab going through all these assessments and working with them. How much better would it be if somebody walked in and said, I want this kind of job. These are the skills I need. This is the education I need. And this is the projection growth in the area I want to work. How more empowering is that? This is why I love this article, What Kind of Job is Right for You?
>> We can then go and explore the different options. Maybe they need to have some job shadowing, so how to do that. How to connect to job fairs. And talking about the difference between traditional work, part time work, customized work or even self-employment. We then give options about how to build those skills through education and training, entrepreneurship, job shadow winning, et cetera, and strategies for seeking employment. So we talked about the self-advocacy and job seeking skills. Again, linking to additional resources, including the ARIZONA@WORK and our Arizona Job Connection and One-Stop Job Center. Talk about different types of courses and trainings that are offered through these one-stops to increase people’s skill center, as well as vocational rehab services. So how to link to whatever vocational rehab services are closest to the individual.
>> The next steps, pull out those resources that we’ve been talking about, including ARIZONA@WORK, vocational rehab, and at the bottom of the 2-1-1, we have additional resources, including evaluations for assistive technology, and employment preparation and resume preparation assistance. So great article, Finding the Right Job for You, and supporting those employment goals. We’re going to go back into our work and benefits section. We can learn about rights and responsibilities. This will address the Americans with Disability Act, talk about discrimination. How do we address it, how to identify it. So some very basic information about rights and responsibilities.
>> Job Supports and Accommodations go more in depth into the Americans with Disabilities Act. And starts talking about, should someone disclose their disability? When should they disclose it? And how should they disclose it? So in that article, it’ll have information, how to talk to someone, how to write, including a sample letter requesting accommodations. Talks about what is reasonable accommodations, how to request those accommodations, and that interactive process, as well as the different types of accommodations which might be available. Then the frequently asked questions, I think is very useful in finding out some of the basic information about accommodations and some of the pitfalls people have.
>> One of the things I prefer is going into the next steps where all of that is capsulated for you. In the next steps, it encapsulates all the resources that have been in throughout those articles, including the Job Accommodation Network, a very useful website to help you understand wealth of information about accommodation. It will explain more about just closing disabilities, more legal responsibilities, or legal responses. But it also talks about common accommodations. People think about accommodations as large expenses. And in fact, sometimes they’re free, and majority are under $500. So you can go through and you can see based on someone’s disabilities or needs, what is a possible accommodation. That also can help you understand what might be an impairment related work expense to help people go to work and earn more money.
>> So if an accommodation is something someone has to pay out of their pocket due to their disability going to work, it can be an impairment related work expense. You can also help people understand that work is possible by showing them the wealth of accommodations that are available to them. In the next steps, we also have Assistive Technology in Arizona, to be able to learn about how to have access to different technology and assisted equipment that people can use, rent and test to see what works best for them. And how do you pay for these accommodations? Either themselves or someone else, it’s all explained within these articles. So a very useful article. It also then talks about the protection aspect. So if someone is discriminated against, what are their legal rights and how to connect to those groups, like the Arizona Center for Disability Law.
>> The next article is about managing your benefits while going to work. So this is an encapsulated article about the different work incentives. So while there is the full article on SSI and SSDI that we will talk about, it gives you a shortcut about, say, the effect of SSI/SSDI so that you can get right to the point, but then it will lead you intro why deeper conversation. So you can learn about the work incentives, maybe a little bit about an ABLE account. And as you can see, it will lead you to a deeper conversation. So the safety nets in your health care. All these are short, quick paragraphs. So you don’t have to learn everything about SSI, you can read this article, get some basic information to help support your learning skills to be able to know where to go in DB101 to get more information.
>> So it also talks about healthcare and reporting your income and asset building assets. It also talks about maintaining your healthcare, reporting your income and maybe building those assets. So in reporting your income, very simple way, there are reporting articles, both in SSI and SSDI. So you can also go here and learn about how to report your benefits in a lot of different ways. How to report them to Social Security, as well as DES. In the Going to Work Toolbox article, we talk about how to keep organized. So how to report to Social Security and DES, and then how do you organize that so that you know what you reported, when reported and how you reported it. Very important.
>> Benefit planning is not just about understanding what’s going to happen to the benefits, it’s also organizing the paper records. We have not only the organizational tips, but downloadable templates to help you with this. So there is a job search log, there are tracking sheets, there are how did you report your earnings to SSI or SSDI earnings? So these forms can be downloaded, filled out and then organized. So great tools throughout DB101 beyond the basic articles. Now let’s go into your money within the work and benefits section. Here we’ll cover building your asset and wealth, ABLE accounts, achieving a better life experience, individual development accounts, plan to achieve self-support or a PASS plan, earned income tax credits, home ownership for people with disabilities and starting a small business.
>> Within the building your asset and wealth articles, you’ll learn about why assets matter, ABLE accounts, individual development accounts again, other asset building programs which include PASS plans, tax credits and tools and trust funds. So you go into let’s say trust funds. Here you can learn about other types of trust funds. So difference between a special needs trust funds, and how trust funds can work very well with maybe even an ABLE account. So a great way to be understand some of this information about how to help people save money. We also have within this section, of course, your example, frequently asked questions, pitfalls, and next steps.
>> You can go directly into the ABLE account and learn about how achieving A Better Life Experience Account or an ABLE account can be set up. These are highly underutilized and really should be encouraged, so that individuals who have a resource limit of say, when you have SSI of only $2,000, how they can actually save up to $100,000 and not have it affect their resources. That’s the importance of an ABLE account. An ABLE account allows individuals to save money without it impacting resource based benefits, such as SSI, Medicaid, or AHCCCS, HUD or even food stamps.
>> So you can learn about what it is, how to open an account, qualifications, and how to compare. You do not have to only be in Arizona to utilize an ABLE account. You can utilize account in other states. And each state has slightly different rules, so shop around. It talks about how to deposit the money and talk about how to spend the money. One of the things, and again, how an ABLE account and especially a trust can go together. One of the things people worry about is an ABLE account, what can I spend my money for? An ABLE account means achieving a better life experience.
>> So in Arizona, an individual has onset of a disability prior to the age of 26 can use these ABLE accounts for basically anything that helps them feel better about their life. If watching Netflix increases their life, and it’s achieving a better life experience, then they can use their ABLE account money for that. So, it is a great way to save money to avoid the $2,000 resource limit, to allow individuals to save quite a bit of money. And in fact, you can have $15,000 deposited every year by anyone. And if someone goes to work, they can actually increase how much money they can have. They can include an additional, an Arizona, $12,760 of their earned income, which means a job, into an ABLE account without it being considered above the resource limit.
>> The other thing about an ABLE account that is really wonderful is an ABLE account is managed by the individual, which means they have access to the money and become empowered and are not dependent on another. In a trust, they do not have access to their own money. But a trust fund and ABLE account can work really well together. There are some downfalls to an ABLE account, so learning more about it, really helpful. Encouraging people to open up these accounts. No more than $50 to open up an ABLE account in Arizona. You could also learn about individual development accounts to maybe help with buying a home or other asset development. You can also learn about individual development accounts maybe to help with saving up for a business, higher education or a home. And a PASS plan.
>> PASS plan is a plan to achieve self-support, are very helpful for individuals specifically on SSI, to help them work towards a work goal, help them work off of benefits without it impacting their resource limits. So within this article, we learn about the basics, the eligibility and the application itself, how to set money aside in the PASS plan, how to suspend or terminate a PASS plan, how to self-employment PASS plan. This is what’s important. A PASS plan can be used for multiple things. They’re very detailed plans. The money can only be used for that plan to help with either an employment or vocational goal that will help people eventually work themselves off of SSI. People on SSDI with very low SSDI, benefits can also utilize a PASS plan.
>> PASS plans can be created by anyone. So very helpful. We not only talk about the eligibility in the application, but we also give examples of successful PASS plans so people can utilize it for expenses, maybe like college expenses, or a work goal of starting a new job and getting those resources they need for a new job, or even starting their own business. So very helpful, very highly underutilized. We also talk about earned income tax credit. I’m not going to go into that specific one. But people don’t realize that people on benefits should be filing taxes because they might be getting money back. So let’s talk about Earned Income Tax Credits with the individuals.
>> Home ownership is something that most people with disabilities think is not a possibility. This article allows people to understand things they can and cannot control about home ownership. It’s not only Section 8 home ownerships, but it’s also about different ways you could actually earn a home. And in the next steps, it talks about public housing, but it also talks about other programs that are there to support people, maybe in their first home, programs that help specifically people with disabilities, and because of our particular time, perhaps they need for closure prevention. So there’s help to support people to not only get a home, but to maintain the home they’re in including, as we go down further, perhaps dealing with home barriers or removal services, which means home modification. So how do we modify a home so individuals can live with in their home and not move into any type of congregated settings.
>> One of the things I love is that AZ DB101 has a Starting a Small Business article. So it talks about, is it right for you to be self-employed and start your own business, and how to even develop a business plan. Something we are never taught in employment services, how to develop a business plan. So it has breakdowns of all the sections of the business plan and resources to connect you to how to do that appropriately, including how to raise money and save money for your business. Below the articles within work and benefits, we’ve also pulled out a couple additional articles, programs that support work, the Social Security Ticket to Work, and the work incentive articles so that you have them readily available to support going to work and saving money.
>> When most people think about AZ DB101, they think about the estimators. And while the estimators are awesome and incredible tools, they are merely only a piece of AZ DB101. I wanted this training to focus more on the tools around the estimators. So for more in depth training, there is a training specifically on how to use the estimators including the mini estimators. We’re going to quickly just touch on them in this training. The second panel of our homepage shows the benefit planning estimators. AZ DB101 has three estimators. The Benefit and Work Estimator, which is for individuals over the age of 18 using SSI and SSDI. They have the School and Work estimator for people under the age of 18 only on SSI, and the AHCCCS Freedom to Work estimator, which is about Medicaid buy-in. We talk about potential eligibility and potential premium payments.
>> The estimators are very easy to use. You simply answer the questions and it will help you understand the impact of employment on health care and cash benefits. As an example, in the benefit and work section, it explains who was at for. It talks about gathering the information you need. The main focus is knowing the correct information, SSI/SSDI benefits, what are their work goals. There’s no private or identifying information within DB101 and nothing is ever shared with any organization. So like I said, you simply follow the questions. Name it, enter some basic information, the month and year of the individual. This is simply find out how close they are to full retirement or if they can utilize other work incentives for people who are younger. Answering the questions about household information, about their plan, and you get the results.
>> We’re going to go back to our homepage. And I’m going to go into My DB101 to get a previously saved session to show you how they look. So I answered the simple questions and what I got my results, which allows me to explain the complexity of say someone in this case, who’s co-current, which means they receive SSI and SSDI payments. They have HUD housing and nutritional assistance. And I’m able to show what happens if they go to work. I believe this person was going to work at $14 an hour. I can find that out by going to my plan recap and find out what information that I put in. So I had this individual receiving the housing assistance with some work history, some trial work history. And they’re going to be working at $15 an hour full time at targets, name of the job I gave them.
>> They have Impairment-Related Work Expenses even. You have what is their SSI and SSDI benefits, and now their health care. And we’re able, because we answered the questions, to be able to get these results and their monthly income goes up. We’re able to show how their benefits change over time. We’re able to show even though this person will lose their SSI and SSDI cash benefits and their nutritional assistance cash benefits, they still have considerably more money $2,610 compared to their $934 previously. And they get to maintain their health care coverage. And in fact, they have additional health care coverage available because they’re going to have private health care through their employer as well as our Medicare and Medicaid.
>> Then it goes in explains the bottom line to help people understand what they’re talking about, about their benefits, how they will go to zero. How their rent will increase but not at a fast rate. We’re able to suggest ABLE accounts and suggest they go through monthly income expenses, their next steps and talk to an expert. Again, here’s your expert. It goes into explaining information about substantial gainful activity, 1619(b) and perhaps a PASS plan. All this is foreign language to you. But you can easily click on a button anytime and learn about what is substantial gainful activity. So simply reading this information to someone is very helpful.
>> It talks about underneath your chart, the timeline shows every month when there’s a change, anytime there’s a significant change. So going to the timeline is the best way to explain any of these benefits. So you can go through and explain when they’re going to happen, what’s going to happen. Again, if you don’t understand the terminology of a trial work month, click and it gives you the information right there. So very useful. And then you can go into the full articles that we’ve been talking about and going to talk about to be able to support this information. You can also go in the monthly income and go month by month to understand everything that’s going to happen, including taxes. All these include next steps. And you can create a report, a PDF report. You can also save them, give feedback, and you can email the report to say your case manager or family member, whoever is in your circle of support.
>> So, again, more in depth training is available in the estimator training. There’s also a School and Work estimator. Again, these are going to be covered more in depth. But let me show you a result through My DB101. I went through, I answered a couple simple questions. There’s considerably less questions for young people. And I’m able to show that they received $210 in SSI. And then they went to work, minimum wage for 10 hours, and they were able to then increase their earnings from 210 to $738.52. Here’s their income and how they maintain their SSI benefit due to what’s called Student Earned Income Exclusion.
>> You don’t have to remember that because it explains it right here for you about how Student Earned Income Exclusion helps individuals who are under the age of 22 going to school part time receiving SSI. We’re able to show the change in their monthly income. And in the next steps on these results, it provides not only information to help on the next steps, it explains what happens to their health care, their cash benefits. And it starts talking about planning for work and school, taking you into the articles that support this information.
>> The next estimator is the AHCCCS Freedom to Work. And I was able to go in and with some very, I think there’s four questions here, answer and find out that this individual appears to qualify for AHCCCS Freedom to Work, which is a Medicaid buy-in, and they will pay no more than $25 a month. Individuals, either an SSI and SSDI, have the ability to buy-in to Medicaid, if their earnings are above what AHCCCS, Medicaid, is in Arizona. So very useful way. You do not lose health care in Arizona. There are ways to get health care and maintain it. So you can do a quick estimator, learn about AHCCCS Freedom to Work and then how do you sign up. And the application is right here to help you move forward,
>> Those are the three estimators on AZ DB101. Again, I just told you what they were. I didn’t go in depth because there is a specific training completely dedicated to these three estimators as well as the mini estimators within the SSI and work, and SSDI and work. Go into that full training, it’s going to give you all the information you need about the benefit estimators. Let’s look at cash and health programs. There are three articles pulled out, finding right health care coverage for you, learn about SSI, or learn about SSDI. These articles are also within the All Programs button. By clicking there, you have access to every program regarding cash benefits or health coverage. There’s also another access to the Benefit and Work estimator.
>> Underneath cash benefits is an article on What Benefits Do I Get. This helps individuals understand the difference between SSI or SSDI. It also helps you understand how to get access to a Benefits Planning Query. A Benefits Planning Query is a document from Social Security that allows individuals to understand what their earning history is if they get Medicaid or Medicare, if they get SSI or SSDI. You can contact your local social security, right here, and get that information. This information must be obtained by the individual requesting it and not a third-party. They will charge for third party inquiries.
>> My Social Security is a Social Security online tool that helps people have access to the information that Social Security has about them. You can attain all the same information within My Social Security online account. You must set up an account with your own personal identifying information to be able to access an online account through My Social Security. We also have access to mymedicare.gov which allows people to understand what parts of Medicare do they have.
>> Back to the all program section. Cash benefits include information about SSI, SSDI, short term disability, long term disability, housing benefits, and cash assistance, as well as nutritional assistance. We’re going to go back up and we’re going to look at SSI, Supplemental Security Income. In SSI we have how to apply for benefits, understanding SSA decisions, how to report changes, how to talk about disability determination, resource and income limits, how SSI counts your income, SSI and work. There’s always an example where it’s a story that talks about how someone is working through that program, frequently asked questions and pitfalls.
>> Let’s go into apply for benefits. It will provide information on qualifications for citizens and non-citizens, including how to apply with direct links to offices, phone calls, you can apply directly online by clicking here. And what it will do is it will take you to the Social Security website where you can apply. But we also have information about how to get ready for your application. This includes a checklist that allows individuals to understand the complexity and all the documentation that is necessary to be able to apply for SSI. There’s also access to other recommendations of different programs while you’re waiting for your SSI application to be reviewed, including AHCCCS, nutritional assistance or cash assistance.
>> You could also learn more about PASS plans or health care. So on the bottom of each section is more suggestions that support the topic you’re looking at. I’m going back to the top of the page. You can also get information to understand the decisions and report changes. Within the report changes, it’s very important to make sure the beneficiaries are reporting stuff in a timely manner. So it talks about what to report as well as how to report it. There are different options including an app to be able to report your SSI benefits. There’s also opportunities. They have little tools. So there’s a little tool button that lets you know that there are certain articles that have additional tools like, How SSI Counts Your Income.
>> You’ll learn about the difference between earned and unearned income. And then we have countable income calculations, which are very detailed. But then you can also go in anytime there’s a tool that’s going to be within a yellow box, and you can try these tools to determine what is accountable income. And they do all the math for you, so you don’t have to understand the complexity of what is above that tool. Back to the top. One of the main articles you’re going to utilize a lot is the SSI and Work article. SSI and Work article provides all the information to help people understand what’s going to happen to their benefits if they go to work. So it explains some of the information. There is also a quick estimator, which I’ll come back in a moment.
>> There’s information available to help you explain Social Security complexity to individuals without being an expert. So we have encouragement throughout this to talk about how rules of SSI help individuals actually earn more money. How not all your expenses are accountable. Then it explains work incentives. Work incentives are rules created by Social Security to encourage and support individuals to go to work. There is an additional training on SSI and SSDI to help you understand how to utilize AZ DB101 to explain complexity of these work incentives. But for now, let’s continue through these options.
>> We’ll also learn how you could actually save money on SSI, learning about ABLE accounts. AZ DB101 is redundant. You can find your information in different ways in different bites. So here’s a small bite about ABLE accounts. Small bite about planning to achieve self-support. These are programs to help people save money beyond a $2,000 resource limit. We also have individual development accounts to help with maybe a housing. We then start explaining the Ticket to Work program where there’s job training and help people find the work they want. We talk about the eligibility of the Ticket to Work program and how to access it. The Ticket to Work and the Work Incentives are different programs. They’re often intertwined, but they’re totally different. The Work Incentives are rules to help people go to work. The Ticket to Work program is support to help people go to work or maintain work.
>> It talks about what if you need SSI again? That fear that people have that if they go to work and they lose their benefits due to earnings, they won’t get them back. This helps you explain if they need to get their SSI back again. And then we have small bites on health coverage rules. So we’re able to explain 1619(b) which means people are still eligible for their benefits, even if they don’t receive their cash benefits. We talk about AHCCCS Freedom to Work, which is our Medicaid buy-in Arizona, and other health care options. Throughout, you can see, you can learn more about at the bottom of each article to take you into the full more detailed article.
>> Back to our table of contents. And go to that tool that I talked about. So one of the tools with SSI in work is one of the main tools I believe a lot of people will be utilizing. To me, it’s the quickest and fastest way to help people motivate towards employment. There’s a full training on how to utilize this tool within the estimator training video. But I want to quickly show you a try it. You can simply go in and put in the person’s benefits. Answer simple questions. Again, full training is available on this. And then calculate what their earnings would be, knowing what they’re earning wages. So let’s say somebody is making 12.15 an hour, minimum wage, no tips and working let’s say minimum wage. We want people to go as much as they want. But let’s start at the basics for this conversation.
>> We’re able to show that individuals are making $1,057.05. We can use those results, not using any of our work incentives. We can continue. With answering only a few questions, you’re able to get a snapshot to let people know they’ll have more money. We have a visual graph to be able to show them the unearned income they have right now, a 794, their working income of over $1,057, and the reduction of their SSI benefit to $307.98. So you’re able to show visually the impact work has on income. You can go down and show the income change is $571.03. I like to use the minimum wage at part time as a starting point in discussions instead of asking people if they want to go to work and try to argue with them about benefits.
>> I can ask someone, what would you do with an additional $571? Have that conversation. Find out what they would do. Would they live differently? Would they eat differently? Would they have different entertainment? How would their life change with an additional $571? Once you’ve talked about what would change, you then say, let me show you how that’s possible. And do an SSI quick estimator and show them that it’s possible. You can also then show them that the bottom line is that their earnings are more than offset the reduction of the SSI check. I don’t like to say that word reduction when talking to people about their benefits. So I like to tell them, for every $2 you earn, you get to keep $1 of your SSI check, that equals the reduction.
>> You’re also able to show them in this quick snapshot, how they are still eligible for their free AHCCCS, and it talks about the resource limit. It also then suggest them reaching out to a work incentive consultant and going in and doing a full benefit work estimator when they’re done. Remember, work incentive consultants are available through the little circle, and your benefit and work estimator is explained in more detail and additional training. Back at our program section and going down to our SSDI. The SSDI article is set up exactly like your SSI. You start with your basics, how to apply, understanding decision and reporting. We also go into additional information if someone is insured. And if they have a disability, according to Social Security.
>> The SSDI and work have a tool icon. And so clicking into there, you will also have exactly the same type of information explaining the complexity of what would happen to someone’s benefits if they go to work. It starts explaining the work incentives and general formation. We have a quick estimator tool here as well. This full training on how to utilize the quick the estimate for SSDI is available in the estimator training session. We go into the different phases of work, trial work period, extended period, eligibility, et cetera. This additional information will be available in the SSI and SSDI specific training. Let’s go into housing.
>> Housing isn’t just about Section 8, though, we do talk about Section 8, how to apply and how Section 8 works. But there’s also other rental supports, as well as home ownership support. So supports to help people with rental assistance or maybe foreclosure prevention. We also have information about earned income disregard, which helps people understand if they’re in a housing program, how their subsidies for that program will not increase as much as their income goes up. We also have sections on examples, frequently asked questions, pitfalls, and again, next steps. Let’s go into this next steps to show you the complexity that can be in it.
>> We have information directly related to HUD. We have information directly to public housing authorities, including how to get their information directly online, assistance for helping with utility bills, finding affordable apartments, information about foreclosure prevention and making homes affordable. We also have how to apply for housing assistance, several phone numbers and direct links. The bottom underneath the 2-1-1, we have additional information on how to help with rental assistance, maybe some general mental health counseling or benefit counseling screening, residential placement services for people with disabilities including group residential homes, and also how to remove barriers for home modification and mortgage payment assistance. So a lot of information available within this housing section.
>> We’re back to our program section. Underneath housing is information about cash assistance, TANF, as well as nutritional assistance, known as food stamps, that’ll help people apply for these benefits, understand these benefits and the eligibility, and then a frequently asked questions, including how to get directly to the application process themselves. Now, let’s move to the health coverage section. Finding the right healthcare coverage for you is a great mini tool. This tool can be utilized for individuals on benefits or off benefits. People with or without a disability. You can simply go in and put in the annual earnings for the family. And the size of the family.
>> Let’s say this is a family of three, we have a grandmother, a mother and a daughter all living together. Questions are simple. Does anyone in your family have a job that offers them with healthcare? No. Are there any children in the family? Yes. Is anyone in your family on Medicare now? Yes, grandma? Does anyone in your family have a disability determination? Yes, the child. Is anyone your family over 65? Yes, the grandmother. And we go down and see the options. When you click on the show results, you’re able to get a graph showing what kind of health care is available for this family. Anything in green is what’s available. So it’s broken into employment, income, disability income and age disability.
>> We’re able to show that this family is potentially eligible for kids care. By hovering over, we’re able to find that kids care is free public coverage for low income children. We’re able to see the limit for a family of three. We could go up, change the size of our family, let’s say there’s four people in our family, show those options. Hover over kid cares, and the income limit changes to a family of four. So it’s very specific about this family. I can click into kid care and takes me directly to an article about it. I’m going to go back to my tool and show you that underneath the graph is also learning more about the information. And it breaks each section down where you can go directly into it. So you can go into learning about each of these sections. So if I wanted to know more about disability-based AHCCCS, simply click in and I’m taken to that full article. Going back to my program section.
>> Going back to the program section, underneath health coverage, we have information about AHCCCS, which is our Medicaid and Arizona, AHCCCS for people with disabilities. There’s some times there … Going back to our program. We’re able to show under health coverage, we have AHCCCS and AHCCCS for people with disabilities. These are two different programs. People can receive AHCCCS, which is Medicaid due to low income, but they can also receive it because of their disability. We also have an article on AHCCCS Freedom to Work which is our Medicaid buy-in, information on Medicare, employer sponsored health care and buying into health care coverage on healthcare.gov.
>> I’m going to take you into AHCCCS Freedom to Work. This is one of the programs that very few people know about. AHCCCS Freedom to Work, it’s a Medicaid buy-in. It directly takes us into our basics. Information as in all articles. Then we have tools to help you and more information to find out is AHCCCS Freedom right for you, what it covers what you pay and how to sign up. Your example, your frequently asked questions, your pitfalls, and your next steps. Your frequently asked questions on the AHCCCS Freedom to Work, I think are very helpful. AHCCCS Freedom to Work allows individuals to buy into Medicaid and pay no more than $35 a month. They can earn over 65,000 a year and have Medicaid by simply utilizing this tool.
>> It talks about, it’s confusing. How do I get help. So that brings you directly to all the people that can help you to understand AHCCCS Freedom to Work. You don’t have to be the expert. The experts are readily available right there. Where can you sign up? Who is eligible? What does it cover? How much can I make? What is countable income? So this allows you understand that an individual who is earning over 4,000 a month and no other income, that would be considered countable income. Anything above that would allow people to buy-into AHCCCS Freedom to Work as opposed to just having regular AHCCCS. Then talks you through the whole process to help people understand this complexity. We also have a tool to understand what you will pay. That is your AHCCCS Freedom to Work estimator, which we go through in an additional training.
>> Back to our programs. So we also talk about employer sponsored health care, as well as how to hook up with health care through healthcare.gov. This is helpful to anyone to be able to sign up for Affordable Care Act. So it talks about is right for you, how to pay and how to sign up. So I’ll talk you through the whole process about open enrollment, it will change any of the dates of when open enrollment is, any special enrollment issues, and how to set it up. Back to our programs. So you can see a lot of information is available right in this article to help you understand the complexity of benefits without you having to know all the information. You can simply research it through here, search for it at the top and find the information you need to support individuals and provide the information they need to go to work.
>> AZ DB101 was very fortunate to have a full youth section. This section is not only helpful for young people, but also for people who are transitioning into independence, not just transitioning into adulthood. Let’s look at this section. See what makes the biggest difference for young people. I have three articles pulled out. One on options as you enter adulthood, another one how benefits support young people going to work and articles specifically for parents. Let’s click the All Youth button. We now have a quick AHCCCS to the School and Work estimator. Young people in benefit sections include benefits for young, people start planning now, getting a higher education, finding a job, working and an article about Eric Goes to College, which is an example article to show how benefits work together.
>> In the benefits for young people section, we have the basics. Why benefits matter, key programs, eligibility for key programs, SSI eligibility for young people, AHCCCS eligibility for young people, AHCCCS Freedom to Work eligibility for young people, private health care and other programs and next steps. This provides some very good information to help people understand the complexity of benefits and young people. There are some very key programs that are different when someone is under the age of 18 and change drastically when they do turn 18. So this will provide a full overview.
>> We’re back into the young people section and we’re going to start planning now. In the start planning now section, there is a lot of great information for young people to move into independence. There’s also great information for anyone else who is moving into a more independent setting, or trying to find out more about their stuff and their options. articles within this section include how to understand yourself, how to communicate with your family and friends about your wants and your needs, learning about new responsibilities and how to handle your healthcare, how to manage Personal Care Assistance, options on moving out on your own, how to talk to your family, your friends, your communities, learning your new responsibilities.
>> And while these are responsibilities about moving into adulthood, these are also responsibilities to help everybody learned about managing money, tracking your money, paying bills, dealing with credit, avoiding debt, talking about the poverty and dealing with your benefit and financial planning. Some very basic information to get people starting to think more in depth about their financial needs. You can also learn about handling your health care. How do you talk to your doctor? What do you know about your disability? The Living on Your Own article has information about housing options, finding affordable housing, even information about finding a roommate and for individuals who have never rented before, some basic questions to help them understand the relationship between them and their landlord.
>> So very good information including a new responsibility checklist. And while it says after high school, I plan to live X, Y, Z, it also can be used for helping people think about what are they going to do to live independently. Will they need a personal care assistance? Do they need assistance with any of their functional daily activities? Do they drive? How are they going to get to really want to go? Speaking of independent living, in the Understanding Yourself Article, you move down a little bit past the Disability Worksheet, learning about the difference between a medical and social model, help people become empowered and start making their own decision.
>> So self-determination, independent living philosophies, speaking about what are independent living centers, explaining Ed Roberts and Independent Living Movement, which will also allow you to be able to connect with the independent living centers throughout Arizona. There are five independent living centers that can help with a wealth of information to help people live independently. Remember, independent doesn’t mean alone. It means finding the right support resources to live the life you want. One of those independent living centers is Ability360, which as we spoke about, is the Work Incentive Consultants that have been following us. And while this may not be a work incentive question, you can contact the Work Incentive Consultants to connect directly to Independent Living and maybe get some information and resources.
>> Getting a higher education, while it’s directed towards young people, can be very useful for anyone who’s going to school. You can learn about the difference between community colleges and universities, helping you understand where you want to study, help you figure out the application process, how to fill out applications, how to fund your education, including how to fill out Pell Grants, scholarships, and financial funding. It talks about getting a job while at school, and other financial considerations to think about, including debt that might come about when going to school. We also talk about the right accommodations for people in school, like how to use the Disability Resource Center.
>> We’re going back in finding a job section. Finding the job will provide whether you want to work or not. So even talking about that decision about work, deciding what to look for, getting that experience, finding a job and how to apply for a job. So some very basic skills of, again, focus for young people, very helpful for individuals who are moving into their first job. Working article, again, very useful for basic information on your first job. It even explains what FICA is, and how to explain what’s going on with the paycheck. Throughout all of this, there has been next steps to be able to provide additional resources, including how to connect to your one-stop centers, rehabilitation are always offered at the end of the articles.
>> I’m going back into our youth section. Moving into the parents focus, there are five articles to help parents understand the complexity of Social Security and independence for their child who happens to have a disability. So the articles are Four Ways Benefits Support Work, Work is Possible, Making Work Part of the Plan, Turning 18 and Managing Benefits. Four Ways Benefits Support Work provides basic information to understand AHCCCS and how a job plus SSI provides more money, how their child can save money, and how their child can stay connected to SSI. We want to remember we don’t want to tell people they’re going to keep their benefits. If someone is on SSI, they will have a reduction by going to work have their cash benefits. What we want to do is help them stay connected to their SSI, so if they need to increase the benefits they can and they maintain their health care.
>> We talked about how work is possible. So helping parents understand the myths. Don’t Believe the Myths have three of the main myths that a lot of parents worry about. The fact that their child won’t be hired because of their disability. Or they can’t work because of their disability. Or they’re going to stop getting their benefits because of a job. These provide you some basic information and lead you into more in depth articles for parents. Making Work Part of the Plan talks about how to get everyone on the same plan. To be able to talk about an individual education program or IEP, makes sure everyone understands, work is the goal, and how to bring everyone together to focus on that. So very useful and exploring different ways to help with self-confidence, independent living skills, the IEP program itself.
>> In the next steps, it brings you into learn more on DB101 which will take you to deeper articles for parents to look at. So it’s very great to be able to give them a checklist. These are some things to think about to help support that decision to go to work. Back on the youth page. We also have Turning 18. This article explains how rules change when someone turns 18. The SSI rules and the AHCCCS rules do change. Some benefits end and others start. This goes through that complexity and helps people understand the redetermination and what they need to help with that process.
>> The last parent article is Managing Benefits. This is a reduced discussion on benefits specifically towards young people. So it provides some basic information. It talks about reporting to SSI and reporting the AHCCCS, and will lead you into more in depth conversations that lead you back to the SSI and SSDI articles we’ve already talked about. On the youth page, underneath the articles, we pulled out three additional articles that we think will be helpful to be successful at work, including ABLE Accounts, Finding the Right Job for You, Job Supports and Accommodations. All of this is all under the youth tab or on the homepage in the youth panel.
>> And that concludes the AZ DB101 overview. Remember, you have additional trainings on estimators including the mini estimators and also how to use AZ DB101 to understand SSI and SSDI work incentives. AZ DB101 is there to support you in the work that you do. You can access AZ DB101 at az.db101.org.
Ashley Inkumsah: Hello everyone and welcome back to What’s Up with the World Institute on Disability’s biweekly podcast, where we discuss what’s up in the disability community across the globe. I’m Ashley Inkumsah and I’m so happy to be taking over hosting duties from the incomparable Nicholas Love. Now I’m super excited for you to hear the awesome conversation I had last week with Conchita Hernandez. Conchita is the founder and chair of Mentoring, Engaging and Teaching All Students also known as METAS. Now, METAS is a nonprofit that trains educators in Latin America, who work with blind and low vision students in addition to other disabilities. And she also engages lawmakers and policy discussions about people with disabilities and inclusion. Conchita is also the blind and low vision specialist at the Maryland School of the Blind. She is a woman of very many titles. And lastly, she conducts workshops for educators and professionals in the field of disability and advocacy in the United States and internationally.
Ashley Inkumsah: Now last week we discussed her experiences as a disabled Latina woman and why blind and low vision students of color deserve access to a quality education. Once again, I am so excited for you to hear our conversation so grab yourself a snack and I hope you enjoy.
Ashley Inkumsah: I am so happy to have you here today on today’s episode and I’m so enamored with all the work that you’ve done, surrounding of course education and the intersectionality between being Latinx and disabled. How are you doing today? That’s my first question.
Conchita Hernandez: Thanks. I’m so glad to be here. I feel like there’s so much pressure to be like, oh, I’m good. But I feel like nobody’s really good. It’s a lie we tell ourselves.
Ashley Inkumsah: Exactly.
Conchita Hernandez: I think we are all having crises is every day. I would say I’m navigating the crises that are currently happening.
Ashley Inkumsah: Exactly. And I feel like we’re getting back to some semblance of normal, which makes me feel good and the weather is getting better. I hope for this summer that it’s some semblance of normal in our world. Once again, I am so excited to have you here so we can just jump right into my questions. My first question for you is I know you were born in Mexico and you came to the United States when you were, I believe, five years old, and you grew up in California. I know you’ve also lived in New Jersey, Nebraska, Louisiana and now you’re in the DMV area. How were your experiences, firstly, growing up? And how would you contrast them to being in the United States and the various different states that you’ve lived?
Conchita Hernandez: Yeah, you’ve definitely done your research.
Ashley Inkumsah: I come prepared.
Conchita Hernandez: I’ve lived all over the place. And ultimately I think what it comes down to is resources. When I was born, obviously the ADA wasn’t alive when I was born. I’m sorry, not the ADA, well both actually, the ADA and the IDEA. But in Mexico, there was nothing. My brother who’s also legally blind was already done with grade school by the time we came over and he definitely didn’t get any type of services in school at all. It was just kind of like, you figure it out or you don’t go to school. And 60% of people with disabilities in Mexico are illiterate because of the fact that there really isn’t access to education. Coming to the United States, I think, depending on who you ask, they’ll give you different answers. If you asked my mom, she was like, “Oh, it was amazing. You had services and you had IEPs and you were able to go to the doctor and stuff.”
Conchita Hernandez: Because her comparison is Mexico where there was nothing. But knowing what I know now about education, about what I should have gotten, I got really basic services because I do have a fair amount of vision, and I had good grades so I got by and I really struggled, but because they were like, “Oh, you’re doing well academically then you don’t really need us.” I didn’t really learn anything in school accommodations wise. I didn’t learn how to travel independently. I always went with somebody every single place that I went to. I had struggled to read and stuff, but I didn’t know how things existed. And I grew up in a small town in Northern California that’s predominantly farm worker families.
Conchita Hernandez: And so I think there’s a lack of people knowing what resources exist. But then also there’s a lack of explaining it to the communities. The disability rights movement started in California and I never knew about it. I was never introduced to it until I was in college. That’s what ends up happening. Unless you’re college educated, you don’t learn about the disability rights movement about your rights, about being an advocate. And that’s just ridiculous. It’s a huge loss to so many people that are not college educated, that may not speak the language, that don’t get access to the information. And across the United States kind of different places I’ve lived, I’ve seen the same thing over and over. Kind of the people that are marginalized within the communities that they live don’t really have the access to information.
Conchita Hernandez: And so a question I get a lot is like, “Oh, can you tell us more about how communities of color are more ableist?” And I’m like, “No.” We’re no more ableist. Everybody’s ableist. It’s just we have less access to information. We have less access to resources. And when you have all these panels on college campuses, we’re not a part of them. We don’t even know you exist. It’s not that we’re apparently more ableist, it’s that we’re just not getting the resources and the information that you’re sharing with us. And you’re not even thinking of us when you’re creating these resources. Everywhere I’ve been, I’ve seen it over and over again and really seeing my privilege as like, I’m very highly educated. I speak English well, I know about these resources. I’m definitely an advocate and stuff, but it’s kind of this, there are so many more people that we’re not reaching that we really need to.
Ashley Inkumsah: I feel like it’s safe to say that literally every single country across the globe has been touched by toxic masculinity and misogyny. And in Latin America, the concept of machismo is so heavily imbued and ingrained into the culture and it only further marginalizes people with disabilities. I feel like they contribute to that ableist ideology. Would you agree with that? What were your experiences growing up as a Latin American with a disability? What were your experiences with that?
Conchita Hernandez: Yeah, so I think absolutely like machismo absolutely intersects right with disability. And so my brother being blind, he had a lot of opportunities that I was never allowed to have. I never learned how to do some basic things, like ride a bike. And for him it was like, “Oh, let him do it. Let him explore it. If something happens to him, it’s okay.” But to me it was like, “Oh no, you’re going to get hurt. Don’t do that.” And so there was very different expectations about what we were supposed to be doing and not doing. And so a lot of those things kind of intersect and come together. But then at the same time, some of those things, not that machismo it’s very bad and very negative, but community structures are actually what help us continue to thrive in our communities.
Conchita Hernandez: Because there’s a lack of services and supports within our communities, then our communities become the supports and become support systems. In Mexico or in other places, because there isn’t that assistance, then families take care of the relative and they become that support system. And so sometimes when you come to United States, it translates over to oh, the family is super overprotective and they don’t let the person be independent or whatever, but you kind of really have to understand the context that that was what helped the person thrive and survive because they had that support system. And so it’s really difficult to kind of move away from that. And even just, we hear a lot in the disability rights movement, this idea of being independent. It’s a person who is a white male, they’re expected to be this very independent, pull yourself up by your bootstraps type of mentality.
Conchita Hernandez: But in our communities, able bodied people aren’t that way. We all create community in order to support each other, whether you have a disability or don’t a disability. And so how do we use that strength that communities of color bring where they have community and incorporate it? Instead of being like, oh, your family’s holding you back. I hear that so much where people are like, oh, we’re trying to help them be independent, but their family doesn’t let them. And I’m like, but because you’re not incorporating the family into the teaching, you’re just trying to teach to that individual.
Conchita Hernandez: I actually, through my nonprofit, we do trainings and one of the trainings that we did was in Texas, in collaboration with the National Federation of the Blind of Texas. And we brought in Spanish speakers who were blind, who don’t have access to services either because they’re undocumented or they speak Spanish. And one of the things that was really important is we brought their families and we were like, we’re going to offer the training, not just to you, but to your whole family. And so we offered free hotel and free food for the whole weekend. And we saw the transformation that that made with the family being able to understand, oh, okay, this is how it’s happening. And then seeing that they have a role in that path of their family member. Whereas when we look at it individually, they really see it as, oh, you’re trying to set me aside and I want to support them, but I can’t now because you’re telling me they have to be independent.
Conchita Hernandez: Taking that family support and saying, “You are a part of it. Not only are you a part of it, but you’re vital to your family member being a part of the community and this is how you can support them.” And that really shifts people’s way of thinking. And then it really has positive outcomes because then the whole family is on board. And we saw a huge transformations with family being like, oh, I now know how I can explicitly support my family member. Instead of being seen as a hindrance to their independence, I’m now a support system because that’s what they want. They want to support their family members.
Ashley Inkumsah: Absolutely. I think, and within marginalized communities and especially within people of color, that sense of community, there are strength in numbers. When we unite, when we assist each other, because like you said, there is such a lack of assistance where there should be. Sometimes we really have to lean on each other and lean on our families. That’s completely true. As an educator, I’m wondering, and an advocate whose work centers around disability inclusion for the blind and low vision Latinx community, I’m wondering why is access to education for disabled immigrant students so important to you?
Conchita Hernandez: I think access to information is so important because that’s what allowed me to kind of come to my own and just kind of be who I am. But also so many educational opportunities are denied to multiply marginalized students. There’s so much obstacles in education, not even higher education. K through 12 education for students with disabilities. And there’s so much inherent racism in education in K through 12 that when you’re both a student of color and disabled, there’s definitely a lot of barriers that you have to work through in order to succeed. A lot of people are like, oh, you’re so smart. And I’m like, the thing is, I’m not. There’s no such thing as being smart. I have friends who I went to high school with that are way brighter than I am that have way better ideas, that are brilliant, but they never had the opportunity because they were seen as being bad behavior because they had so much energy and it was never addressed or they didn’t do their homework. And research shows that homework is actually just a measure of your socioeconomic status. It actually doesn’t do much other than that.
Conchita Hernandez: We’re marginalizing students in multiple ways and preventing them from reaching their education. I’m not saying every single student needs to go to college, but I’m saying we need to remove the barriers that exist, that don’t let students advance in their education so that they can, if they wanted to, graduate high school, if they wanted to, go onto higher education. What does that look like for our communities? I’m getting a doctorate in special education and I have super struggled in my program to get basic things such as accessible materials and accessible books. And I’m somebody who’s highly educated and I’m an advocate. And I still am like, I could have gained two degrees with all of the extra effort I have to do to navigate my program. And it’s just additional labor that you have on top of already kind of what everybody else has in going through school.
Conchita Hernandez: And I really think it’s kind of the way of education will liberate us. You’re not going to be less discriminated against because you have more education or you’re not less likely to be a victim of police brutality because you have more education. It’s not going to liberate us from these social issues, but we should have the opportunity like everybody else to be able to navigate through them easily, without all the barriers existing.
Ashley Inkumsah: I totally agree. I think we live in a world where access and while privileged really affords a lot of people opportunities that a lot of people can’t get. Education shouldn’t be a barrier for people who don’t have privilege. Everyone should be able to have an education. You’re totally right too, education will not save you. I always hate when people are like, so-and-so was a doctor, they shouldn’t have been killed by the police or something like that. It shouldn’t matter what someone’s education level is. Human life is a human life. Definitely I think education is important, but obviously it’s not going to save someone, but it’s an important thing to have access to.
Conchita Hernandez: Absolutely. And I am light skinned and it has been a privilege for me. An example, when I was in high school, I took AP courses and I was never questioned why it was in the courses. It was just like, okay. And the majority of the people in the courses were white. It was the high school I attended was half Mexican, half white. And mainly the kids, there was a couple of kids of color, very few kids that were in those AP courses. But I was accepted. I was never questioned as to why I was there. Whereas my sister who is brown, she can’t pass the way I can pass, was always questioned by teachers. When she would go, because you had to go turn in a form and when she would have to go turn in her form her teachers would be like, “Are you sure this is the right class for you? Is this the class? Are you sure you can keep up?” And she’s one of the examples that she’s way brighter than me. She has so many great ideas, but yet her place was always questioned and mine wasn’t it.
Conchita Hernandez: And so I think being cognizant of the fact that my light skin was absolutely a privilege in kind of my education. And when you look at, I’m friends with a lot of people in the Latinx community in higher education, a lot of us are light skinned. And so we’re systematically the ones making it through. And it’s ridiculous really, but we can’t deny that it did give us a privilege, enabled to advance in education.
Ashley Inkumsah: Absolutely. And it shouldn’t be that way. I think it’s like that for really every industry, whether it’s the music industry or the television industry or whatever industry, you typically see the lighter skinned people who are placed at the vanguard where you would think Brazil, a country like Brazil, that’s majority darker skinned people, you would not know that if you turned on your TV. You think of Brazilians of being very lighter skinned and it’s a problem.
Conchita Hernandez: If you watch a Mexican telenovela, you’d think every Mexican was blonde and blue eyed because all of the people on the shows are white. It’s a huge issue.
Ashley Inkumsah: Yeah, it really is. It really is. I’m going to pivot to my next question is how do we begin to kind of rectify the disparities in education that exists for immigrants, low income people with disabilities?
Conchita Hernandez: That is so complex. There’s multiple ways of doing that. I think the Department of Education tries. There’s certain data that states have to turn in to the federal government on disproportionality. And they’re supposed to turn in that data and then write up reports on how they remedy it. But the thing is you have the same people writing the reports on the remedies that have been in those positions forever. And it’s the same white women, white men who are in those positions, were not really being tasked to be creative about how to do it. Were not really bringing in who are experts on race in schools. It’s kind of same people being like, oh yeah, we’re going to hire someone to do professional development. We’re going to do somebody who’s going to do this.
Conchita Hernandez: There’s two groups of people. There’s one group of people that is the most important change is done through legislation and that’s how we make things happen. And there’s another group of people that is the most important change is through advocacy and protesting and that is how we make it happen. And I really think both are vital to each other and they can’t exist by themselves. We need people who are actively working on legislation to make sure that good legislation is in place and that it’s moving forward and that it’s systematically creating change because unfortunately people don’t do stuff unless you legislate it. Students with disabilities didn’t have a choice of education until it was mandatedly legislated and even now we still have issues with it. But then we also needed the people who are speaking out and being really outspoken about issues on the ground, on the street and being advocates to push it through the other end because they get the attention that people who work legislatively just cannot and both are really crucial to each other.
Conchita Hernandez: If we allowed students with disabilities of color to advance in our educational system, they could be these leaders holding these positions that have innovative ideas. People with innovative ideas need to be part of conversation. Because it’s not just like, oh, we have these people who are diverse, but what does that look like in practice? Do they have different experiences? Different people coming to the table and saying, “Hey, what about this?” In a way that nobody had thought of. And we really need people that have lived experience to be part of the conversation. There’s so many times where I’m the only person with a disability talking about students with disability. What important decisions are being made? And that’s just, why are we still doing this? But because we’re not letting those students with disabilities advance into positions where they can be making these decisions and then we don’t hire them. And then we don’t provide them with accommodations once they’re at the workplace.
Conchita Hernandez: It’s a very complex thing, but there’s multiple ways that we need to be addressing these issues. And one of those ways is also teaching kids in K through 12 education about disability rights and about disability justice. And that will teach the educators because they have to teach the content. I never even knew there was a disability rights movement until I was in college. We need to be starting kids young so that they’re exposed to these issues and so that sometimes people ask me, “What’s the most important thing you wish a person with a disability or a student with a disability knew?” And I said, “For me, it’s that you’re perfect just the way you are.”
Conchita Hernandez: I think so much when we’re going through school, it’s all about a deficit model of, oh, you’re not doing this correctly. Or you can’t do this or you can’t do that. And so being able to be like, I’m perfect, just the way I am. I just need to do things a little bit differently or I need to have accommodations or I need to have positive role models who I know that I can do things. That was a really long answer to your question.
Ashley Inkumsah: No, that was a very comprehensive answer, I would say. That was an amazing answer. And like you said, it’s an issue that it can’t be unpacked, in one answer. It’s an issue that definitely is going to take a long time to address and to rectify for sure. That was a great answer. And I guess my next question is even beyond the school setting, why is it so important for us as a collective to eradicate racism, xenophobia and ableism that affects multiple marginalized people? Why is that so important?
Conchita Hernandez: I think what people don’t realize is that very few people feel fully welcome and fully themselves in spaces. And that tends to be white, straight men. They can show up fully how they are to any space and not feel any which way about it. Everything is defaulted to their needs, to their wants, to who they are. And they don’t feel like, is this a place I can fully be myself? And so it’s very liberating when you have those spaces that you can have. And for some communities, it’s very minimal spaces. A lot of people can not fully in their work place, be fully who they are. They can’t talk about a lot of these issues with their families. I feel like, definitely in the Latinx community, these issues are not talked about enough. And so I think being fully able to show up in spaces and be yourself is something that a lot of people take for granted that so many communities just cannot do. Not because we don’t want to, but because there’s real repercussions when we do.
Conchita Hernandez: And also, we should want to live in a society that’s just an accepting of all people. And we have a long way to go for that. Especially when we have a country that was built on these issues. We were a country built on racism, built on ableism, built on marginalizing folks. It’s not as simple as like, oh, there’s a couple of racist people or there’s a couple of ableist people. We’re all really racist and really ableist. And how do we dismantle that and learn to do differently so that we can have a better society for our children and everyone we live in? And there’s a lot of other reasons that are very, you can sell more products to people that are very capitalist and stuff. We’re a huge population. People with disabilities are one fourth of the population. And so when companies don’t make things accessible or cater to us they’re hugely missing out. But above that, it’s just having everybody feel like they’re welcome everywhere they go I think it’s just so important.
Ashley Inkumsah: Yeah. I think specifically, for the disabled population, sometimes it’s hard for people who are not disabled to kind of relate to that, but having a disability is the one thing that could happen to literally anybody and will probably happen too, because everyone’s going to get older at some point in their life. And this is exactly why it’s so important for us to come together and unite around the cause of disability justice and disability rights. And allyship is so important. It’s so important to have people who are non-disabled alongside the disabled community. And even beyond that, people with disabilities deserve to be valued, loved, respected, accommodated, et cetera, et cetera. It really shouldn’t be as difficult as it is, but it’s just a human rights thing. It’s just it’s a justice thing. It’s a rights thing. People with disabilities just deserve to be valued, just like people who are non-disabled do. What would you say is your driving force to do the work that you do? What inspires you? Why did you choose to be an educator? And what are your aspirations for the future?
Conchita Hernandez: I would say community for me, for sure. Community is kind of what drives me and what gives me energy and gets me excited. When it’s building community, it’s not I’m not building my platform so that I can be popular, important or educated, but rather the work that I do, how does it serve my community? And how does it improve the lives of other children who are currently in school so that they can do all of these things? I think for me, it’s definitely kind of the driving force is my community. I’m doing my doctorate and I’m planning when I graduate to do a huge party. And that’s what I look forward to when I can’t finish, I’m like, oh, how am I going to get this done? It’s definitely I’m going to have a huge party where everyone’s invited and that’s just what keeps me going. And I feel like that that’s kind of what drives me, just having that connection to my community and being able to make a difference that’s bigger than myself.
Ashley Inkumsah: Absolutely. I love that. Are there any projects that you’re actively working on that you would like to discuss? And where can our audience find you on social media? Where can they keep up with you?
Conchita Hernandez: Yeah. I feel like Twitter is probably the best place where you can find me, I’m Conchita HDZ and we can share it, I guess, however, the podcast is being shared. Something I’m working on, through my nonprofit METAS, we’ve been for the last year, really providing resources and information to Spanish speaking communities around blindness and disability. And we’ve really created a big network of folks across the world is really what’s happened during the pandemic where people didn’t have resources even before the pandemic. But now we were able to connect and share information and resources and we’re planning some really exciting events coming up that are not super public yet. I can’t exactly tell you but we’re really, really excited about kind of the work that we’re doing and the families that we’re reaching. And a lot of the families that we work with are in Latin America and they don’t have IDA or ADA. And so what are ways that we can share with them on how they can educate their schools to let their students attend school with them or try to advocate to pass some legislation that doesn’t necessarily exist where they’re at.
Conchita Hernandez: And then we’ve also had having community help build. We’ve had great partnerships with different people, but in a university in Mexico, they really wanted to partner with us. And their students have been creating amazing videos for us where any parent, wherever they are, can create tactile materials for their students, with the materials they already have at home. We have a ton of videos on characters in books, or how to teach your child how to count with this you can make at home. It’s just been a really, really exciting kind of people’s creativity and how it’s built on kind of all of us coming together and trying to support each other and seeing the needs that we have. The nonprofit’s called METAS, M-E-T-A-S and you all can find us on Facebook is probably the best place. We always share information on there. But yeah, that’s kind of the exciting thing going on I guess.
Ashley Inkumsah: That is amazing. I can’t wait to find out what the events are that are upcoming and all the exciting things that you’re working on. Once again, I am just so enamored with all the amazing work that you’re doing and you’re just such an inspiration really for the entire disability advocacy community. It was just so wonderful to chat with you today. I really appreciate it. Is there any closing thoughts that you’d like to leave our audience with?
Conchita Hernandez: Thank you so much for having me. It’s always fun to just kind of have a conversation and think things out loud with people. And I think the kind of, I was thinking about when we kind of first started talking about kind of the whole idea of coming back to normal and what does that look like for people with disabilities. When pre-COVID we weren’t normal, like we have so many barriers and so many things that we were asking for accommodations that all of a sudden you can do because of COVID that you told us you never could do. Working from home, I was definitely denied at that before and all of a sudden, oh, you can do it now. Just so many things that people with disabilities don’t have. At my university, they finally put a bunch of books electronically and they’re like, oh, it’s because of COVID.
Conchita Hernandez: And I’m like, so are you going to continue this after COVID? Because it’s the only way I can access the materials. I just really hope that people, I hope we don’t go back to normal. I hope we take the lessons that we’ve learned from COVID and really apply them to real world and stop pretending people disabilities don’t exist and really take what we’ve learned and apply it and continue to provide accommodations for people, continue to provide all of these great things that came about during the pandemic that we can continue to do that. And then we can continue to build community based on what we did because of COVID how so many people came together and supported each other and fought for each other and spoke up for each other. How can we continue to do that in a post COVID world in a way that we had never done and that we were forced to do in the last year. I guess that’s my hope for all of us as communities and as people kind of moving forward.
Ashley Inkumsah: Yeah. Yeah, definitely I think instead of building back better, we need to build forward better. That’s what I’ve been saying is that you don’t want to go back to before, we want to build forwards. We want to take what we’ve learned from the past year and go forward. That’s definitely the trajectory that I hope that we’re going to be on.
Ashley Inkumsah: It was such a pleasure to speak with Conchita and I really admire all the work that she’s doing to ensure that blind students of color have access to an education. Too many times, disabled students are not even given so much as an opportunity to thrive and to flourish in the school system, especially those who are of color. And we already know that even beyond the school system, the world is just not built for disabled people. And I feel that people with disabilities spend so much time trying to navigate a world that was literally not built for them and we need more people like Conchita who are fighting to make the world navigate to accommodate people with disabilities, honestly. It’s so amazing that Conchita has parlayed her own lived experiences into fighting for inclusion and for access for the Latinx disabled community. It’s truly amazing and something to marvel at, for sure.
Ashley Inkumsah: Now, thank you all so, so much for tuning in, you can find transcripts in American sign language interpretations for today’s episode and all of our past episodes on our website at http://www.wid.org/whats-up-wid. That’s W-H-A-T-S hyphen U-P hyphen W-I-D. And to paraphrase the words of our wonderful Nicholas Love and one of our founders at Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you so, so much once again.
>> MEGAN LANG: Welcome to our Global Alliance for Disaster Resource Acceleration town hall. My name is Megan Lang, and we would first like to announce that we are recording this webinar. It is also currently being live streamed on WID’s Facebook page, which is Facebook.com/World InstituteonDisability and we have put the link in the Zoom chat. For starters, everyone has been muted. You can activate captions on your toolbar located at the bottom of the Zoom window, or use the URL we just put in the chat box. And I see that has been put there. Lastly, we do hope you will share and tweet about this WID town hall listening session and the very important issues you’ll raise today. We would love it if you use #DisabilityDisasterAlliance on the various social media platforms. I think that’s all the housekeeping, so let’s get started. I will turn it over to Priya penner, who will kick us off.
>> PRIYA PENNER: Thank you so much Megan, hello, welcome everyone, my name is Priya Penner I’m with the partnership for disaster inclusive strategies as well as with GADRA my pronouns are she, her, and I am a Brown woman with curly black hair. Today I’m wearing a pink shirt and a red cardigan, in addition to my black over the ear headphones. So welcome once again to the Black Disabled Global Disaster Experiences action strategies webinar. We’re so excited that you’re here today to continue this conversation with us. This is a continuation of a previous conversation and previous panel that we held in February that I do hope that you all were able to attend. During that event, we discussed the experiences of Black disabled individuals all across the globe from different perspectives our five panelists, Anita Cameron, Dikko Yusuf, Vivienne Isebor, Kaman Kelly Wasup, as well as Leroy Moore, these panelists had a great discussion on what they believe to be the roots of black disabled folks are experiencing around the globe when experiencing disasters. They touched upon lack of resources, specifically financial resources, the lack of education, specifically for people with disabilities and Black individuals with disabilities. We also discussed how integrated and systemic the ableism and discrimination and racism were. So we had a really in-depth conversation in February on the roots of the issues that Black disabled individuals experience when facing disasters, I do hope that you go back to the GADRA Facebook page or Twitter page to review that post production, as it is archived for folks to review so you can have an idea of what that first conversation really looked like. Today the conversation is going to be centered on “how do we move forward?” and “how do we take what we learned from the first session and continuing that conversation so that we can address these issues?” As I previously mentioned, we have five amazing panelists, panelists with us today, that’s Anita Cameron from Not Dead Yet who is based in the United States, her pronouns are she, her, hers. Dikko Yusuf, who is with the Special Needs Initiative for Growth based in Nigeria. Their pronouns are he, him, his. We have Leroy Moore from Krip‑Hop Nation based in the United States, pronouns, him, his, Vivienne is with us from ADHD Babes based in the United Kingdom, pronouns are she, her, hers, and finally but certainly not least we have Kaman Kelly Wasup from Papua New Guinea, Assembly of Disabled Persons and PNG Blind Union, Papua New Guinea, Kaman prefers to have their pronouns as their name.
So we are going to run ‑‑ excuse me. We are going to go ahead and get started. We have the first question, which is, I’m going to start off with Anita, which is, how do we address the roots of these issues? Anita, we had this amazing conversation last time and you really discussed in depth the resources or lack thereof for disabled Black individuals in the United States and all across the globe. How would you suggest that we really address the root of the issue?
>> ANITA CAMERON: Thank you. Hello, everyone, my name is Anita Cameron. Quick Description: Black woman, long dreadlocks, sky blue shirt with a globe and various people with disabilities on it and the shirt says Disability Pride.
Well, certainly the issues of ableism and disability discrimination, the lack of access to resources, the lack of funding, for me, you know, also the lack of effective, or lack of a better word, use of someone’s talents, the problem is a lot of times as Black disabled folks, we’re not at the table, so to speak, or on the ground floor, and when we are, we are either underutilized or overutilized or tokenized, so we really have to ‑‑ and it stems from this kind of inequality and inequity. So for me, those are the roots of the problems. They’re not all, but it’s certainly the ones that I see a lot in my experience.
>> PRIYA PENNER: Wonderful. Can I ask you to elaborate on the resources and how the resources could really, you know, address the roots of the inequity in these experiences with disasters?
>> ANITA CAMERON: Well, I think, you know, so often between being disabled and being Black, we’re seen as lesser, and so the talents that we may bring, you know, into the picture aren’t utilized because people are so busy dealing with their emotions of I don’t really want them around or do we really need to have them, or do we really need to listen to them, you know, because so many individuals, agencies, entities, you know, don’t really want to hear from us, if you will, or think that it’s okay not to hear from us, that they’ll make the decisions for us, and that clearly does not work. So what ends up happening is I’ve been in situations where, okay, so we’re allowed to participate, but the environment is so toxic that it drives us away. We don’t want to ‑‑ you know, we don’t to want deal with that. You know, or people are so in their heads, you know, with this attitude of, you know, what value that they have that they just kind of dismiss, you know, what we have to say, don’t really listen, talk over us, you know, and all of that. So that’s what I mean as far as people resources, human resources. That’s a failure to effectively utilize people’s talents and gifts when you’re so busy in your own ableist, you know, or racist views and in your minds questioning what we have to bring, then it causes you not to want to effectively utilize that. So, you know, people have to sit with themselves, breathe, and know that if you’re talking about disabled and disabled Black people, the experts on this are disabled and disabled Black people, so deal. And that’s the problem with disaster, in disasters, disabled people and Black folks, we die needlessly. You know, we die when there’s no reasons we should be dying because of ableism, because of racism, because often we are poor and we don’t have access to, you know, the things that wealthier communities have. So, you know, folks need to sit with us, listen with us, you know, listen to us and work with us, take our suggestions because we’re the ones that know. Thanks.
>> PRIYA PENNER: Beautiful. Thank you so much, Anita, that is so important to hear. Dikko, I’m really curious to hear your perspective on this question, and again that, question is, how do we address the roots of these issues that we’ve previously discussed? I’m really curious to hear your response from your corner of the world.
>> DIKKO YUSUF: I’m Dikko Yusuf, Black male wearing a pair of glasses, got black hair, short hair, cut low. Yeah, it’s good that you say from my part of the world because I do consider that some of the problems that we have in Nigeria can be a little bit, well, not in the same way relatable to the ones that you might have in the U.S. or in the UK or even in Papua New Guinea, where Kaman is from and with us today, it’s very important to pick up from the last question asked and the last conversation we had which was about the disaster cycle. So this is a cycle, I mean, that’s something that’s very key to remember, if the cycle is not broken, you know, if that continuous recurrence of this kind of situation that we find ourselves in is not broken, it’s not stopped at some point, it’s going on keep happening, right? So the way I see it, we cannot keep, we cannot always keep taking reactive measures every time there’s a disaster. We have to make sure that disaster response does not start when disaster strikes because this is almost the thing that happened with the COVID‑19 pandemic, and I hear this a lot. Whenever I’m in a conversation where people are discussing the pandemic, they say, well, it’s an eye opener, right? They keep saying it’s an eye opener. But before the pandemic, remember, we had several other disasters. Why were they not eye openers? So I think for me at least, the best way to address the roots of the problem now, the roots of the problem, very important is to make sure that we learn from current events and we’re in the middle of one right now, we’re at the height of this problem right now. So what I think is very important is to learn from the problems that we have seen during this pandemic and even during previous disasters and to make sure that they’re integrated into the next disaster planning preparation, you know, for subsequent disasters that probably, you know, will come and I think most global people who know stuff and predict stuff would say, yeah, sure, you know, one will always be around the corner, so we’ll be better prepared.
>> PRIYA PENNER: Thank you, Dikko, I really resonate with that. I know others both on the panel and in attendance really do as well. Thank you for sharing that. Vivienne, I want to turn to you because I know last session, we talked about, specifically you talked about education specifically for Black disabled individuals and I think that really connects nicely with Dikko’s point, and I want to hear from you in your little neck of the woods over there in the United Kingdom what your response is to this question.
>> VIVIENNE ISEBOR: Thank you. Hi, I’ve Vivienne Isebor, I’m wearing a blue head scarf and T shirt with a black necklace. I agree with what’s been said already kind of being preemptive and not being kind of reactive to things that happen because if you’re already on shaky ground and then something shakes you, you’re more likely to fall even harder, so I think having that Foundation to start with is really important. So I guess here in the UK, we have really clear statistics that show that our community have poor outcomes across the board, so we look at the education where before the age I think it was five, Black children, especially Black girls do really well and then beyond that, you start to see that there’s a dip in how well we do, and we think that that’s linked with how teachers treat us and how we’re viewed within society. You start to realize your race and that starts to impact you, and then you have what we call PRU, which is a pupil referral unit for students who might be permanently excluded. And there’s a really high correlation between going to those PRUs and then ending up within the prison system. So a lot of young Black boys are kind of excluded or they’re seen as disruptive and it it kick starts a reallt negative root for where they go in the future, when they’re disruptive. We look at employment and we have the same difficulties where a lot of people who are Black might express might experience discrimination in the workplace or there’s higher statistics with us being unemployed and then you look at mental health statistics and there’s poorer outcomes, in regards to psychosis , in regards to getting support and talking therapy and even within the general healthcare there’s a lot of difficult statistics that show that people from the Black community especially Black women, aren’t listened to and believed when they’re in pain. So there’s a lot of different aspects to how difficult it is to be Black in Britain, and then when, you know, add that all on top of a pandemic, that just for a general person is going to be difficult it just makes recovering from that and even just sustaining that really difficult. So I think to address the root of the problem, even though it’s such a wide spectrum, I think it is kind of looking at those wider difficulties, how can we kind of address all these different obstacles that are put in front of Black folk as they’re going through life and how can we kind of safeguard them against those things and I think community services do that really well. I know that for me, managing to get through school was because we had things at the Duke of Ellington program where we were taken camping and we were, you know, taught about Black history and we had loads of things that intersected with all the difficulties that we were experiencing, and again, it’s difficult because funding for these things have been cut over the last five to ten years.
So I think yes, it’s about addressing those kind of all those multiple things are getting in the way of us having a good quality of life, pouring money and resources back into the communities that are providing these safe spaces for people to recover from what we’re having to experience just for being Black. So yeah.
>> PRIYA PENNER: Thank you, Vivienne. Yeah, that’s a very important perspective. We all know that education, specifically for disabled Black folks, is simply lacking, and that absolutely does contribute, as you said, to the perpetuating nature of the inequality within the disaster cycle. So thank you, really, so much for that. Kaman, I’m going to turn to you because I’m really curious to see your perspective and hear your perspective on how, you know, we address the roots of these issues, you know, in your corner in Papua New Guinea.
>> KAMAN KELLY WASUP: Yeah, I’m Kaman, yeah, I’m wearing a black sunglasses. I just want to extend on the conversation which the other panelists alluded to. We’ve been discussing about some of the issues facing Black disabled people. In Papua New Guinea, it’s a Black country so pretty much sometimes it’s similar, sometimes it’s not similar, so some of the things that we’ve been seeing the lack of accessibility that support us, it’s not related but sometimes international donors or partners they know that persons with disabilities organizations are on the ground to carry out things, but they use the other international organization to come down to come down to the ground programs and that’s one of the challenges we face. Going on to the question we are discussing right now, I see this building on from the other panelists, I see the importance of identifying where are we in terms of our participation and engagement in driving closer to be on the table or to discuss or to put some of the resources forward for them to participate in discussing the decision‑making process, so where are we and how do we get there? So it’s good to identify, you know, it’s good to identify some of the barriers that are creating or limiting our opportunity, our chances to be on the table, to participate. So once you identify the barriers, it might be systemic barriers or it might be some institutional barriers causing problems for us as Black people to be at the table to discuss, once we identify barriers, it can give us an opportunity to put the steps together, mechanisms to strive to be included.
So my point here is just building on the panelists’ discussion forward is to identify the barriers and how we can get there, how we can remove the barriers that are causing us to participate effectively despite, you know, if we are Black or despite our region or our colors and disability as well. That’s how I see it, thank you.
>> PRIYA PENNER: Thank you, Kaman, thank you so much for your perspective. It’s so important to recognize the barriers and realize that we can’t move forward and address the roots without initial identifying the roots and barriers. Leroy, I’ll turn to you, and I know in the session in February we had discussed together and you had mentioned specifically the lack of financial resources and lack of financial support for Black disabled leadership and turn to you with this next question, which is how can other leaders best center Black disabled leadership in local, national, and global emergency management, planning, response and recovery?
>> LEROY MOORE: Thank you for having me here. I’m a Black man with salt and pepper hair, sitting in my room. I’m going to be honest. I’m going to be honest. You talk about how you get people involved, well, it doesn’t make sense to get people involved when our government doesn’t implement our laws. So when we had Joe Biden ran for President and disability campaign, you know, fully fund the IDEA plan. That law has been in since 1975, so he just woke up one day and said “oh we fully fund this.” The thing is we have laws on the books, they’re not fully implemented or fully funded. Same thing in the UK, the UK does studies after studies after studies on Black disabled people. It’s called implementation. So we can have support and fund our group and do activism all day and twice on Sundays, but if the government does not implement our laws, then we’re left out so we need to really put pressure, and this goes back to the UK too, put pressure on these governments to implement our laws, because if we don’t have that, then we don’t have anything but a piece of paper.
So we can advocate until next Christmas but we need our government to really implement and fully fund our laws. But I can keep on saying that IDEA be fully funded. And that goes to education. When you can’t get an education, then you can’t get a job, and you can’t get a house, so it’s a trickle‑down effect.
>> PRIYA PENNER: Absolutely.
>> LEROY MOORE: So let’s pressure the government, and if we have to sue the government, let’s sue it.
>> PRIYA PENNER: Thank you so much, Leroy, absolutely. I think the panelists agree, we have heard from several individuals already, Vivienne and Dikko, about the importance of education and ensuring that Black disabled folks from the beginning are educated so that we can have ‑‑ so that Black disabled folks can have the support to be able to, you know, go through the disaster cycle. If you don’t have those initial tools, you’re already at a disadvantage, absolutely. What I’m really, you know, I really want to hear more about and I think I’m going to turn to Anita on this because you mentioned this as well during the last session, is, you know, when centering Black disabled leadership in local, national and global emergency planning response and recovery, the leaders are there. Leroy says, you know, as Leroy said, leaders are there and we need to listen to them, but for folks who are wondering on, you know, what else, yes, listen to Black disabled leadership, but what does that look like to you, Anita?
>> ANITA CAMERON: Listening to us, well, my feelings on, you know, if you’re truly listening to us, the way it’s going to show or manifest itself is that you really listen to what we’re saying and then implement the things that we’re saying, and make it so that things are accessible, you know, for us, like I said. I mean, we’re on these committees and commissions and it is absolutely true to you have to ‑‑ you can’t just wait until a disaster to start doing things, you know. You have to plan before the disaster so that you can do things during and after the disaster, you know, and recovery phase and all of that. But truly hear us, implement the things that we are saying, value us, you know, don’t tokenize us, don’t put all the work on us, you know.
But then on the other hand, don’t give us little busy, busy work to do. Don’t give us busy‑busy work to do. You know, give us real, effective things to do so that we could really, you know, listen to us, do things in a culturally competent fashion. That’s another thing that has to happen. Look at the way, you know, I think that people, that it will be clear that people are listening to us. When you implement the things we listen to us, take notes, implement the things awe say and do things in a culturally competent fashion. So I mean, to me, the biggest thing on show that you heard us is to put what we say in action, in motion.
>> PRIYA PENNER: Wonderful. That’s very similar to what I’m hearing from Leroy, and it really sounds to me that the best way to center Black disabled leadership is to recognize Black disabled leadership. Dikko, would you say that’s true?
>> DIKKO YUSUF: Yeah, I think it is true, it very much is true. And building up on what Anita and Leroy have said also, I think part of the implementation is, because I’ve seen this firsthand here in Nigeria where I am, my local government decided that it’s going give away scholarships to disabled students, but the problem is they were not able to identify the target audience. So they put out the scholarship, it’s out there, and they said that only two people applied, the slots are there, but people are not applying. So I think one of the things that you do if you want to send to Black disabled people in local, more general, and national politics or leadership is that you need to have them individually within the holds of power, so where power resides, as these decisions are made, for example, the scholarship decision, there’s somebody there with a disability that can say or suggest the best channel to make the people with disabilities aware of, you know, the targeted audience and do it in conjunction with organizations and associations for persons with disabilities because this also happened in Nigeria during the COVID‑19 pandemic where relief materials were being distributed but because associations and organizations for persons living with disabilities were not really consulted, so many people with disabilities were not able to go to the places where these things were being distributed because it was so crowded and people were pushing other people and it’s not really accessible to someone with a wheelchair or even in the implementation of stay at home orders, some people were Deaf and they were unable to hear when they were being shouted at stay at home or blah blah blah, so in terms of the implementation, it is important to implement them, but also it is important to have disabled people where the decisions are made individually within high positions where the decisions are made, sort of like advisors telling the people in power how to implement these things, because if you leave it to the government and say okay, we have written papers and so on, go and read the papers and it will help you, you know, in taking your decision, from my experience, what I’ve found is that it often doesn’t work that well. When you have somebody and like I liked what Leroy said, pressure, pressure is important so also along with that keep the pressure, and I think when you have somebody there and people the and organizations and the people who campaign for these things are also backing him, I think them, whoever they are, I think it’s going to be very helpful in terms of implementing it.
>> PRIYA PENNER: Thank you so much, Dikko. I wanted to live Leroy an opportunity to respond to that, and then I’m going to turn to Kaman for our last question. Or not our last question, one of our last questions.
>> LEROY MOORE: Yeah. I want to give a really good example, on the ground example, because we can talk about government all day but really what’s on the ground is what we’re really doing. So disability justice social club and really is kicking butt on the ground, you know, during the PG & E outage. They came out with a fund to help other disabled people, and be this on the ground. That’s number one. Number two is POOR Magazine, and POOR Magazine has this project called Homefulness and they are building homes for low‑income, no‑income people, and they do this all with no funding. Some am there’s answers on the ground, and we need to pick up and bring to the state level and the federal level because essentially during these emergencies that are happening, we need alternative platforms, especially now if we want to come out of COVID and come to a new place in society, then we need some new radical ideas. Thanks.
>> PRIYA PENNER: Thank you, Leroy. What I really heard from that is the answers are there. We have the answers. The Black disabled community has the answers. So one of the best ways to center Black disabled leadership is recognize Black disabled leadership, listen to Black disabled leadership, and follow Black disabled leadership. That’s really what I’m gathering from the five of you. So thank you guys so much. Kaman, I’m going to turn to you for our next question, and that’s, how do we build a culture where truly inclusive and equitable disaster preparedness, response and recovery is the norm?
>> KAMAN KELLY WASUP: Yes, how do we build a culture. It’s only when we effectively participate in the process, you know, in the designing, when we’re talking about disaster, when we are talking about leaders, our Black disabled people are not missing out on service delivery in terms of responding to whatever the disaster is, rioting or whatever. To build a strong culture, it’s only when we are participating properly in the decision-making process. So how do we participate, to recognize us, to recognize Black people in the process and also to participate in whatever, you know, discussions or whatever strategies they are putting forth, whether it be the government or development partners. So I think, I strongly think that if only we are participating effectively, if we are participating effectively from the designing of the projects, right from the designing of a disaster and preparedness response and planning of things, then we’ll know and we’ll ensure that we can tick the box. If we’re not participating all across the cycle, as some of our panelists have alluded to, we’ll be missing out. So the important thing is to see us participating in the process.
>> PRIYA PENNER: Absolutely. That is so important. And, you know, it should be noted again, and what I’m hearing from you guys really is that participation is there. It’s really important to recognize that participation ‑‑ excuse me, that participation and encourage other disabled Black folks to participate. So thank you so much, Kaman. Vivienne, we haven’t heard from you in a while. I want to turn to you. What are your thoughts on how we build a culture where truly inclusive and equitable disaster preparedness, response and recovery is the norm?Ly.
>> VIVIENNE ISEBOR: Thank you for including us in the conversation and the wider context what I was saying before in terms all the wider determinants that might impact our lives as Black folk but also disabled, yeah, considering all these wider things that might impact us and having that in mind when we’re trying to understand and support people, so I think looking at the Hierarchy of Needs. So if somebody having a difficult time finding housing, it’s not really going to do them justice to offer them a study skills coach for work because the home they’re going to is not stable. So I think it’s considering people, yeah as a huge ‑‑ as an entire person and sometimes I think with support services, they can just focus on one element. Person and they don’t consider the whole. So I think changing that narrative where we see the bigger picture and work across services so, you know, if it’s a service that supports women who might be experiencing domestic violence, is there also a service that supports young people, so those children in the family can also get support. So having ways to work together so there’s a community of support around people. I also think there needs to be some kind of, I guess, in terms of the idea of recovery, we need to subscribe to the disability model, so not placing the problem on us, is society accommodating us, is it accommodating our difference and if not, that’s how we move to a recovery norm, actually this person isn’t the problem, we’re just not providing them enough space, we’re not giving them the right tools and resources to improve their quality of life and I think if we change that narrative it takes away a lot of shame and takes away the fight to get support because that becomes a standard that this person needs a leg up, they need a helping hand, and that becomes normal, it doesn’t become their problem. Yeah, and I think that just needs to be held in mind a lot more and that can be kind of rolled out across different services. So yeah, I think that’s the main thing for me.
>> PRIYA PENNER: Wonderful. Yeah. Absolutely. We don’t live if a bubble. You know, humans don’t live in a bubble, and we don’t live with one specific identity. We know that can Crenshaw has coined this term intersectionality, and really keeping that in focus, keeping that idea in focus so that, you know, people are supported in every way they need and not just one specific way. Is that about right?
>> VIVIENNE ISEBOR: Exactly. And not placing the problem of them because the problem is not them, the problem is that there’s not enough resources to support their difference.
>> PRIYA PENNER: Absolutely.
>> VIVIENNE ISEBOR: And diversity is within the scope of humanity, we exist as a ‑‑
>> PRIYA PENNER: Absolutely.
>> VIVIENNE ISEBOR: So it’s not a problem, it’s a difference, and that needs to be heavily included in our systems and how we set up structures.
>> PRIYA PENNER: Absolutely. 100 percent. That shift is so important.
Dikko, I want to turn to you because I know that you have some thoughts on this specifically on what Vivienne said. So did you want to jump in here? On what Vivienne said.
>> DIKKO YUSUF: Yeah. I almost don’t want to jump in here because Vivienne has so beautifully. Like changing the narrative and making sure that it’s not about like I’m the one with a disability, so I’m the problem obviously and I’m the burden. It’s all about having this kind of more balanced approach to what we want to become appears a society, recognize the difference ‑‑ as a society, recognize the differences that exist, and Vivienne talked about this beautifully. So I do not want to hammer on this too much, but I do think it’s a very important point and it’s worth emphasizing as much as we can because the key point that I also to want stress is, if we start looking at society as the one or society as the thing that is not designed well to fit our own different kinds of abilities, then we start recognizing that okay in a school we should have more accessible learning for students, in a place of work we should have more accessible work for a person who works there and also in general daily living we start recognizing those little bits of improvements that we have to make in the design of our world and then when there’s a disaster we don’t have to start talking about okay, how do we quickly evacuate, okay, now we’ve evacuated everyone put somebody’s wheelchair is still up 20 stories, so just leave the wheelchair. When next are they going to have a wheelchair? We don’t know but that he is not our problem. So if we ‑‑ but that’s not our problem.
So if we start looking at a society to say okay is it really designed to accommodate the differences that we have, think we would have a more better, you know, appropriate and more efficient response, if you like, to disasters as a whole. I’m very excited to be part of this, because yeah, you learn from things like this, and I think partly probably the bigger, larger point of having these kinds of conversations.
>> PRIYA PENNER: I want to specifically note, Dikko, that your comments are definitely not only welcome but highly respected and I’m so glad you did add your comments because what I’m hearing from you, that Vivienne alluded to, is, you know, when we are really meaning to actively meaning to support Black disabled folks and other multiple marginal individuals we are better be supporting the community as a whole, everyone’s needs will be met.
>> DIKKO YUSUF: That’s another aspect, disability is making things not just better for us but the larger society, you’re absolutely right.
>> PRIYA PENNER: Thank you so much, Dikko, I really appreciate your thoughts. We have about two minutes before we ‑‑ before we jump to the Q & A portion. I want to get to the last question, we’ve discussed this during this webinar as well as a webinar in February, we’ve discussed how racism and ableism really impacts Black disabled people’s experiences during disasters and how it perpetuates the inequalities within these systems, so we, meaning GADRA, we are establishing a Working Group that specifically focuses on ensuring that our work is led by and accountable to Black, Brown, Indigenous and other disabled People of Color globally. And as future members of this Working Group, which we’re all very excited to have you on, what is one thing you want to focus on as we build equitable disaster responses? I’m going to turn to Anita and then to Leroy.
>> ANITA CAMERON: Thanks, but I quickly want to go back on something, and it might even be applicable to this. I’m a community response team member, a CRT, I’m a CRT, I teach CRT, I design CRT programs. When you look at training materials and you don’t see people or situations that represent you, that makes you feel like you’re forgotten. So in all of my CRT training, I never saw disabled people in the training materials, pictures of us, I certainly never saw Black people, and I certainly never saw disabled people. So, you know, I’m thinking that one of the things that we could be doing, you know, here at GADRA as we’re coming up with things and whatnot and designing and certainly these webinars are a great response, a great start, but if we are, for example, if we are designing training materials and things of that nature to reach out to different communities and whatnot, please don’t fill it all up with white able‑bodied folks. You know, use, you know, incorporate us into that. First, incorporate us into that training. I would say reach out, you know, GADRA, I think you can reach out to more Black and disabled communities, you know, not only around the world, but in like rural, poor areas because all of us kind of doing this, we have a measure, I would like to see us like really reach out to like really, really impoverished communities and getting them am to be on that ground floor and be at the table in that. And when we’re dealing with people with disabilities, don’t just, you know, include those of us with the privilege to be able to speak or talk or whatnot. I want to see people with intellectual disabilities in on this. I want to see people who are nonspeaking or nonverbal in on this. I want to see those people that we usually leave out in the disability community in on this. So I think that, you know, us, GADRA, I think we really kind of need to be kind of far‑reaching in our efforts, and, you know, I think we need to work on some funding because this is going take some money.
>> PRIYA PENNER: 100 percent.
>> ANITA CAMERON: There are poor groups and poor folks out there who manage to do this without funding, but I think that it can happen, but on the other hand, don’t leave that all to us.
>> PRIYA PENNER: Absolutely. Anita.
>> ANITA CAMERON: Because a lot of us don’t have the access to money, funding, grants or anything like that, you know, to help us out.
>> PRIYA PENNER: 1,000 percent.
>> ANITA CAMERON: So see us, have us, use us, use us in trainings and education and fund us.
>> PRIYA PENNER: Thank you so much, Anita, that beautiful summarizes this event, honestly. It’s actually really interesting, you answered and Andrea’s question in the chat ‑‑ Andrew’s question which was how do we collaborate recovery and CRT teams around the country and I think you spoke to that Anita and it starts with inclusive trainings and inclusive representation. So thank you Anita.
That I know we do have a couple of questions in the Q & A, I want to turn very quick toll Leroy. Leroy, you have about two minutes. I know you had a previous comment and then to answer the question as well.
>> LEROY MOORE: Yeah, I’ll make it quick. I’ll talk about what Krip‑Hop is doing. What Krip‑Hop is doing. Now we’re going to write a book together about African people with disabilities in our world. We have to realize that Black disabled people have movements before this crisis. So you them in UK, in Toronto and South Africa, and all of them were crushed because of a lack of funding and white voices but that I think we need to tell these stories, to tell these stories about these movements that started out that really nobody is writing about, you know, so that’s one thing, telling the stories and getting the stories out there.
>> PRIYA PENNER: That’s so important. Absolutely. When we don’t know the stories that are out there and the experiences out there, it’s really hard to address those inequal experiences. Thank you, Leroy.
In the next five minutes I want to jump to our Q & A. I’m going on start with Kaman. We have a question, what should the global effort for inclusive and ‑‑ I am so sorry ‑‑ clearly I need to put my reading glasses on.
Let me start over.
What should be the global effort for inclusivity and diversity?
>> KAMAN KELLY WASUP: Inclusivity and diversity globally. Yeah. It’s a progressive realization, not just seeing us especially as disability but seeing us as important person in the society that can contribute towards the development of the society in the country as a whole, so recognizing the importance of everyone to play in the society, then we can participate in inclusivity taking into consideration. Some of the times too, some of the times too, it’s good to embrace, you know, like for me I come from Papua New Guinea, and our cultural practices, how we carry the cultural practices from our traditional, you know, ancestors forward and we continue, it’s very, very strong. So it’s good to realize that and embrace it and gets it forward and bring to the table on discuss how do we embrace and realize that a Black person with disability but embracing how you live and how you do things, it’s part of the inclusivity when you embrace, you know, everyone equally despite how they grew up and things like this. So it’s good to embrace and that you include that.
>> PRIYA PENNER: Absolutely. Perhaps and I would love to hear your thoughts too, Kaman, but perhaps it’s even ‑‑ I would dare say take it a step further and say, you know, people with disabilities are important, A, period, right, as people we’re important, but we’re important, our perspectives are important to disaster management and recovery because we are disabled people, right? Because we have that perspective. We are important because of our disability and our perspective. So I’m sure you would agree with that as well, Kaman.
>> KAMAN KELLY WASUP: Yes, definitely, definitely. An important thing to realize is, you know, everyone, every Black person with disability especially on here, so you cannot be substituted or represented by anyone else. You have to bring a perspective to the table on inclusivity and disability.
>> PRIYA PENNER: Thank you so much, Kaman. That is such an important perspective. Thank you. So we do have a couple more questions focused on individuals. I’m happy to share these questions with the panelists themselves. Because we are at the top of the hour and I am going on wrap us up, I want to first and foremost say thank you to our five panelists. This was such an amazing discussion, and I really truly hope to see you on our GADRA Working Group so that we can continue this very necessary and important work that we have now and we’re doing now. Secondly, I want to thank our access team, that interpret this team for ASL as well as our CART captioner, Lori, who on CART today. So thank you all for your presence and your help today. This event would not be nearly as successful without you all. And lastly, I want to thank the attendees who are here today with us. This conversation really is so vital, and we’re so glad that you’re here with us to have it.
Please stay tuned for the post‑production of this video. It should be out within the next couple of weeks. In the meantime, you can view this webinar as well as previous webinars on our GADRA Facebook page, as well as review other material on our GADRA Twitter page. Thank you guys so much, and have a lovely day.
Nicholas Love: Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability biweekly podcast where we discuss what’s up in the disability community across the globe. My name is Nicholas Love, I’m honored to be a director at The World Institute On Disability. Today’s guest is Dawn Skaggs, which emergency disaster and climate resilience specialist. She is an international subject matter expert, consultant, and speaker on disability in community includes of emergency, planning, preparation, response and recovery. For over two decades, she has provided training and presentations at hundreds of events locally, nationally, and international audiences including radio, television, and university platforms. Her written publications include over a dozen articles on inclusive community emergency management.
Nicholas Love: On today’s episode, Dawn and I will be chatting about whole community disaster, preparation and response for people with disabilities. I’m excited to have you as a guest today Dawn, how are you?
Dawn Skaggs: I’m great. Thank you, Nicholas. I’m really pleased to be here and spend a few minutes exploring how we move forward towards improving the experiences of people with disabilities, both in steady state and at disaster events.
Nicholas Love: Wonderful. Let’s just get right into it. As you know, during both natural and man-made disasters, people with disabilities in marginalized communities make up the majority of fatalities. How can government adequately prepare for disasters to better protect these communities?
Dawn Skaggs: Nicholas, it can actually be capsuled in four words; planning with and not for, is the way that they adequately plan to better protect the communities that are currently not being adequately cared for. It’s the role of the government to facilitate preparedness for all people. So there’s multiple levels of government, each with its own roles and responsibilities but the challenge is that governments cannot meet the needs of all the people in a disaster. It doesn’t mean that the government should not plan for all of the people, it means they need to plan differently than they’ve been planning. Time and time again through multiple disasters, we’ve seen that governments must plan with the people with disabilities and with the whole community. The government agencies then become the planning facilitators in conjunction with their community.
Dawn Skaggs: The government’s role is, in adequately preparing for disasters to best protect the communities is to use the skills and expertise that exists already within the community. People with disabilities know their needs and their capacity, but the government does not. Governments need to prepare jointly together with and not for individuals with a disability by partnering jointly. When they do this, it accomplishes three goals that support fully inclusive preparedness planning. The first one is that individuals, groups, and agencies from the disability community are able to inform and direct the planning and the response and the recovery, so that it is inclusive. So that there isn’t something being done for or about them, it’s being done with them because they have that expertise. They need that seat at the table.
Dawn Skaggs: The second impact is that governments have the access to skills and assets of the disability community. And using that, they can align their planning with what works on a daily basis, rather than what they think is going to work in a disaster. In a disaster, if we want to be most effective and most protective of the individuals in our community, we need to be addressing what’s working on a daily basis? Where are those skills and resources? How can those be leveraged within their existent system to really create a true partnership where the skills are utilized in the way that they need to be, to maximize on that capacity? And the third impact is that, the governments can address real gaps in planning, rather than their perceived gaps and perceptions of the needs of the disability community. So really in essence, if the government want to truly, adequately prepare for disasters to maximally protect their communities and the individuals with disability in their communities, they really need to join forces together.
Dawn Skaggs: Beyond the traditional planning in silos where emergency managers and planners are expected to know what needs to be done. They need to open those doors and really become the facilitators of the activities together with and under the direction of the people that are really going to be impacted. Otherwise, they’re not going to be able to really effectively meet those needs and the plans are going to fall short every time because they don’t know what those needs are. They don’t know how those needs are met on a daily basis and they don’t know how to integrate that into the disaster scenario.
Nicholas Love: Thank you, Dawn. What I’m hearing while you’re talking, I’m hearing the independent living battle cry. Nothing about us without us. That’s so simple, yet, here we are. Dawn, disabled people with multiply marginalized identities such as people of color, LGBTQ+, women, and those living in poverty, are disproportionately effected by disasters. How can we create a whole community, inclusive culture, so that these groups are not forgotten, ignored, and are included during the disaster preparation response and recovery? You talked about bringing us to the table, how do we do that?
Dawn Skaggs: As I mentioned in the previous question, the use of the whole community approach really requires the representation of all facets of the community to include those with a disability. And when I say a seat at the table, I don’t mean literally a seat at the table, I mean a voice. It’s possible to be invited to the conversation and really not be heard. So when we’re talking about inclusive whole community approach, it really requires a public, private, personal partnership that’s critical. And the basis of that is mutually honoring and respecting the voices that do come to the table. So that they’re not just voices, but they are contributors to the plan. And that’s not an easy thing to do. It’s easy to say we all need to come to the table, it’s easy to say everybody needs to be represented. But it’s not a touchy, feely, let’s all feel good together process. It can be very messy and it can be less than linear.
Dawn Skaggs: The struggle comes when we all come to the table with our agenda. With an expectation of the other members of the table and we really need to transform that into a paradigm shift of everyone coming to the table for a mutually agreed goal and mission and that being the maximum health and safety and survival of the community members themselves. That can’t be done in a response. That can’t actually be started in the preparedness conversation, that begins before any of those things come to the table. That begins when the community manager engages with the community. When the agencies and the government agencies really participate as community members, not as community directors or managers or someone separate. Integrating into the whole community strategy includes truly that; integrating. Everyone’s bringing strength and everybody’s bringing needs, including the government agencies and we all need to be coming to this whole community strategy with the goal of creating an inclusive culture where there is equitable and equal respect and contributions and skills and expertise.
Dawn Skaggs: That has a foundation really in a true paradigm shift and what that looks like is the actual self responsibility of each and every community member to acknowledge they are their own first responder. They are their own first source of support. After that, are their friends and family and neighbors and that conversation can only really be had when the people coming to the table, the representation coming to the table, represents personally prepared community members. Personal preparedness is not something that comes easily, naturally, or without fear to a lot of us. And there’s been study after study that demonstrates individuals with a disability most often are not adequately prepared. And even when they feel they might be adequately prepared, the reality is they have not had the supports, they do not have the resources to really, truly come personally prepared. Unless the community members are personally prepared, when they come to engage with the government and NGO and VOAD agencies, they don’t have that same foundation of being able to communicate and share and exchange expertise with the government agencies that will be able to make a difference.
Dawn Skaggs: So taking on that sense of my safety and my preparedness is my responsibility is fundamental to whole community engagement. The reality is, as much as they would like to, as much as we have been taught that, government agencies don’t have it all together. Our job is not to wait for the government agency. Our job is to assess our own personal needs and our own personal assets and access those first and foremost to say, this is me, this is my life, and I’m taking responsibility for it. That then carries through to a second phase of people feeling safe and empowered to participate. And what happens when that occurs is that individuals with a disability, representatives from various community groups, service providers, come to the table without that expectation of someone else solving their problem. They come with the expectation of, I have an expertise and an area of knowledge that you don’t have and we need to put those together so that we can have the same goal and we can collaborate on an equal and equitable and fair playing ground.
Dawn Skaggs: And that really, Nicholas, is the paradigm shift from our traditional approach of expecting the government to care for us, to us coming as empowered contributors to our community with an incredible set of expertise that doesn’t exist if we are not at the table and we are not sharing and we not being effective in partnering with the government agency for that same goal. On the flip side, it is the government’s responsibility to keep that door open. To make sure that the table is a playing field, to make sure that there is the expertise that’s being brought to the table, is honored and acted upon and not just put in some meeting notes or put in a plan and put on the shelf. That there is truly a building of an equitable partnership and relationship. That relationship has to proceed the partnership in order to garner that mutual respect and understanding that individuals with a disability, whether it’s for themselves, their family, their neighborhood, or their jurisdiction. As a representative, they have something to contribute and they’re in a place to be able to contribute that as a participating partner.
Dawn Skaggs: And that those areas of expertise prove to be beneficial to the grander scheme. They’re not layered on, but they’re embedded within the plan itself. And they are then embedded, after the plan, embedded into the community culture. So building that sense of, I have something of an expertise that I can help myself and help others for every individual is really critical. It prepares an avenue to participation that really ensures inclusion because it’s not something we’re doing for a population group, but it becomes the way that we operate on a daily basis, which is then replicated in how we operate in a disaster scenario. So really looking at it from the group up, rather than as a trickle down effect, embeds that inclusive culture into not only our plans, but our thought process and our actions.
Nicholas Love: Absolutely wonderful, Dawn. I mean, the self empowerment, being able to embrace change and that change then affecting all. The winter storm is earlier this year in Texas wreaked havoc on the disability community, marginalized communities, and communities at large, leaving millions without power, gas, or water for several days. As a Texas resident, what are your thoughts about the lack of disaster preparation prior to this storm? And if you could also, as part of that, could you tell me what happened to the people with disabilities during the storm specifically?
Dawn Skaggs: So Nicholas, to the first part of your question, as a Texas resident, I was personally impacted and that changes the experience of a disaster. When it’s about you and your home, it’s different than when it’s about someone else. So speaking to that as a Texas resident, I would say that what I observed predominantly was what can be capsuled as universal impact. In that particular storm and that particular disaster, everyone was impacted. Nobody had a preferred way to do things because when there were no roads, there were no roads. There was no transportation, there was no electricity, there was no water. And it put things on a very level playing field. So although public and private partnerships as I discussed in the previous question and their role in emergency preparedness are important. What we saw is, unfortunately something that is difficult to navigate and even more difficult to avoid. We’re all tasked with an all hazards planning approach. However in reality, there are limited resources. And hazards are always prioritized based on probability.
Dawn Skaggs: When you’re talking about a storm that happens every 100 years or so, it doesn’t get prioritized. And often, what that means is, it doesn’t get planned for because in Texas, we’re thinking about the hurricanes and the tornadoes and the other natural disasters. Not thinking about a storm that shuts down entire cities instantaneously. So this only emphasizes the need for the disability community to be personally prepared and to be collaborating with their government agencies. The more those relationships are developed in advance, the more we can navigate where those gaps happen because those gaps are going to happen. No jurisdictions can plan for all hazards all the time in all ways for all people. It’s not a realistic expectation. So the disaster preparedness was lacking because we all followed the standard prioritization strategy and those things are going to happen.
Dawn Skaggs: Emphasizing the need for those partnerships and relationships. The takeaway lesson from this is that disasters have a universal impact to individuals with a disability and the need for self preparedness and self advocacy regarding their needs cannot be overstated. We saw individuals in institutions who were stranded in the institutions, as were the workers. When the roads shut down, they shut down very quickly and they shut down totally and completely. So individuals in an institution who were reliant on other people for their sustainability, for their preparedness, for their wellbeing, where all aspects of their life were incredibly impacted because those individuals who typically, in steady state, provided those services and that support had other priorities as well. They had their own lives. They had their own homes and their own families and they could not be there in the way that the individuals in the institutions required them to be.
Dawn Skaggs: That resulted in second and third level tragedies where individuals were missing medication, individuals were going without water. And with no flowing water, there was no proper sewage and all of those things compounded to impact. Not to mention, this happened during the COVID crisis. And that had a tremendous impact because we’re not talking about people who came into the storm with resilience. They came into the storm coming from a steady state that they were comfortable with where they were getting the support they needed. All of the resources were taxed already and then to add to the storm, the personal resilience and the personal, institutional, organizational, and government resources weren’t there. Similarly, for individuals with a disability who were living independently in the community. They did not have access to the resources that they were typically reliant on. Individuals who did not leave their home were reliant on meal delivery. If they did not have those personal preparedness strategies in place already, they went hungry because there wasn’t the food there.
Dawn Skaggs: Only serving to emphasize again, Nicholas, the importance of each individual preparing to the best of their ability. Now, it’s common for all of us not to be prepared, particularly as I mentioned, individuals with a disability because it’s a scary thing. It seems like a great, huge task that is insurmountable. Particularly, if we have individuals who have medical needs, who rely on personal assistant services, who have other devices that are dependent on electricity. To think about becoming prepared for 72 hours on your own is frightening. And that fear often stops us in our tracks. But if we take this strategy of each, individual person needs to be self prepared, if your personal assistant service provider is late, you take the initiative of finding out where they’re at. You reach out to your point of contact, you access your natural supports. You do the things on a daily basis to address a potential emergency. That’s the strategy that each individual with a disability needs to take in preparation for their own personal preparedness and resilience in a disaster.
Dawn Skaggs: The role of the government, the service providers, the agencies, the NGOs, is to facilitate that. To find out what needs to be done and support individuals with a disability to become personally prepared because the winter storm is the perfect example of how critical that is. When there are no first responders, there is you, your resources, your natural network of supports, and your ingenuity. Not to say that it’s all on the person, but it’s on all of us to ensure that we develop that strategy, integrate it into what we do on a daily basis, so that an emergency may not become a full fledged disaster. And when the disaster is large and beyond your control, you have some redundancy, you have some resilience, and you have the ability to maintain while we engage with the agencies who are actually never the first responders. We and our natural supports are always the first responders.
Dawn Skaggs: So the takeaway from the Texas storm really was that we need to be strategic and we need to be intentional in building our own resilience and building our natural resilience within pockets of communities. If the first responder is not able to get there because the roads are closed and there’s no gas, then it’s up to the neighborhoods to really be the first responders. Those people who you can trust to know what the needs are and exchange and support each other. Not instead of, but in addition to the obligations and roles and responsibilities of the government agencies.
Nicholas Love: So Dawn, this once in a 100 year storm, what did we learn from that? Has there been changes or improvement in the disability inclusive preparedness as a result of the storm?
Dawn Skaggs: As in most cases in a disaster, the lessons we learned don’t have an immediate and observational impact. Three months later, there is nothing in the community that we can point to and say, “This has changed.” We should have learned the lesson of survival and creating those natural supports and the critical preparedness component for the entire community. What I do see that we can learn and should be learning is building on these lessons that we experience every disaster. And step by step, piece by piece, building a relationship, tying, planning for people with disabilities into the plans that are done by agencies, the plans that are done by jurisdictions, the plans that are done on state and national levels. Making sure that our thought process is fully inclusive. Looking at the things that happened during that storm where individuals were stranded, where people’s lives were in danger, simply due to the temperature. And identifying, what can we take away from that besides the gaps? How do we fill that gap? And how do we develop those collaborations so that, that gap doesn’t happen next time?
Dawn Skaggs: Or, we can identify the gap at the beginning of the disaster to access all of the capacity and resources within the community. Beyond just relying on government solutions. When the disaster like the Texas winter storm happens, as I started to say at the beginning, it impacts everyone and it’s not enough to say there was a gap. It needs to be the beginning of a conversation, which I think those conversations are beginning where we start to identify the roles and responsibilities, beyond the roles and responsibilities, identifying how we empower people to take on those roles and responsibilities. How we educate our agencies to, what are the needs in the community? What are the needs of the disability community? And just as importantly, where is the capacity? And where are the assets in the disability community?
Dawn Skaggs: By looking at the assets post-disaster and saying, how did people manage? Where are the success stories? Where is the story of the woman who lives alone, who has multiple disabilities? But who prior to the disaster, built relationships with her neighbors, built a relationship with the people in her building so that they had a strategy to identify who was safe and who wasn’t and who needed assistance. One example of that would be a building of seniors in a relatively closed community where they had strategized in advance of the disaster, a method to hang a little note on their door. They door hangers similar to what you might see in a hotel and they were color coded so that with a brief look out of their door, they knew which of their neighbors were doing well, which of their neighbors needed some support, which of their neighbors were struggling.
Dawn Skaggs: And creating those resilience tools are things that happen in every disaster and we need to be looking for those and sharing those beyond the borders of the disaster so that as a country, we can start to integrate best practices and promising practices that grow inherently and organically within the community to build that sense of whole community inclusive culture. Where, you don’t know where the promising practice is going to come from, because most often, it comes from the most surprising places and a lot of times, it’s interesting as you look back over disasters, a lot of the things that we do now as promising practices, were lessons learned from experiences and expertise within the disability community. There is a rich plethora of expertise and problem solving and innovation within the disability community and the lesson that we need to learn from the winter storm as well as all the other disasters that are still to come, both human caused and natural disasters, what are the things that we’re doing that are meeting daily needs that are innovative? That are working?
Dawn Skaggs: And look into the disability community as a source for an immense capacity, rather than allowing government agencies to continue to look at the disability community as recipients of resources and recipients of care. We need to be turning that around 180 degrees and looking at the disability community, the experiences of individuals with a disability in disasters and finding out, what were the things that worked. How do we generalize that, so that they can be used on a regional and national level? So that we come to educate the government and power the government and help them do that facilitating role that they really should be doing to address the needs of real people, real needs in real disasters.
Nicholas Love: Thank you, Dawn. People with disabilities are so resilient. We have the ability to overcome quite a bit and we have so much that we can share and I love how you bring together simple suggestions and stories to show what a great impact we can do. Let’s talk about beyond our borders, right? Let’s talk about recent disasters in countries other than the US. And the impact of the culture and the preparedness of people with disabilities. What could the disability led organizations do to respond? And how could they have been more supportive?
Dawn Skaggs: When I talk about building the capacity and accessing the capacity within the disability community, that’s exactly what I’m referring to. What we see across the globe in every disaster is examples of disability led organizations or sometimes even individuals themselves who have a disability, coming to meet the need, to fill the gap that they can see because of their expertise. And we see that in every disaster. We saw that in the Saint Vincent’s Volcano, where at the grassroots level, people who knew disabilities, people who knew disasters, people who knew the real need in the community, came in to the fill the gap. We see that on the micro level within each disaster and we see that at a macro level. In the Japan tsunami, we saw independent community residents and service providers traveling hundreds of miles to provide evacuation assistance because they knew the need was there. We need to be integrating those resources into our global planning. And doing it in a culturally competent manner.
Dawn Skaggs: There are some fundamental priorities that we see around the world and that is the value of human life and the need to care for others that we care for. And we need to be able to identify, what are the core skillsets? What is the core priority? And how do we make that flexible enough that it can be applied within any culture? How do we demonstrate value of human life and resilience in the face of risk and apply that to the diverse cultures that we have around the globe? One of the things we can do is really to identify those, glorify those, magnify those, and share those around the world. When we see best practices, when we see people taking the initiative, when we see disability led organizations who identify a gap quickly because they’re familiar with it, and taking the initiative to stand in that gap. Even if the system is not meeting the needs, they meet the needs.
Dawn Skaggs: We can support those people and those agencies around the world by creating a culture where that skillset is valued be integrating that intentionally and strategically into the emergency operations plans of their particular government and agencies. That’s going to look different in each place because it has to take on the cultural relevance to wherever that’s happening, but in essence, it begins with effective communication. It begins with making the government aware that those disability led organizations are filling the gap and reminding them that really, they need to be a part of that process. They need to be a part of the solution, beyond just identifying the gap and analyzing it. Really taking action. And when they cannot take action due to limited resources or limited knowledge or limited reach and scope, to strategically and intentionally integrate those disability led organizations into their process. That accomplishes a couple things, not the least of which is acknowledging and partnering with those disability led organizations, nor the least of them is, having them a part of the system so that is not a financial and capacity drain on those disability led organizations.
Dawn Skaggs: What we see most of the time is that happening outside of the strategic system in various parts of the globe, but we need to integrate those into their government process so that they do get those reimbursements. They are part of the funding chain. They’re an intentional part of the supply chain, so that they are a natural piece, they’re an acknowledged partner, instead of being the people who fill the gap for free on the side. And we saw that in Puerto Rico, we saw that in The Virgin Islands, we saw that in Saint Vincent’s Volcano, we see it time and time again. Bringing that back again, Nicholas, to where we started, which is supporting those disability led organizations through finding an avenue for them to build a relationship with their government in a culturally competent manner so that they can come alongside and create and fill a mutually beneficial, common goal. Which is, the thriving of their community, both prior to, throughout, or the response to a disaster and just as importantly, but not nearly so glamorous, the recovery from a disaster.
Nicholas Love: You talk about these disasters are happening, these storms, these volcanoes. There’s another disaster happening with COVID. The COVID-19 vaccinations are finally becoming more readily available globally, but across the globe, nearly three million people, most of whom who’ve had preexisting conditions, which means technically they have a disability, died after contracting the virus. In our last episode, we talked about building forward better and creating more equitable disaster planning response and recovery so that the needs of the people with disabilities in marginalized populations are addressed to prevent such deadly outcomes in the future. What inequities remain as a barrier to build forward towards more resilient disability communities?
Dawn Skaggs: I’m glad you asked, Nicholas. There is inequities that remain. Those inequities really carry across all disasters, all emergencies, and unfortunately across a lot of daily experiences in communities. One of the primary roots to that is effective communication. If we want an equitable community, if we want a level playing field in the response to a disaster, be it a short term disaster or long term, like COVID-19, we need to learn how to diversify and pivot our communications. There is no one strategy to build forward towards a more resilient disability community. We have to be flexible, we have to be resilient, and we have to be able to adapt our communications so that the equity that we’re desiring comes because we have provided the opportunities for each and every person with a disability or organization representing people with disabilities. Or Nicholas, even more generally, some of those communities that are also disproportionately impacted who are not part of the conversation, who are not maybe willing to actively engage with their government agencies. If they’re not there at the table, they get left out.
Dawn Skaggs: And when we have long-term disasters and pandemics such as COVID-19, they cannot survive, they cannot be resilient internally. And when we have closed communities that are not involved, we need to be reaching out. We need to be diversifying our communication, we need to be thinking about, how can we create the most redundant multi-motile communication strategies possible? Because if individuals do not receive the information, they cannot act on their own behalf. If we are not effectively sharing, what are the access methods to a vaccine? What are the methods to stay safe? What are the things that you need to be doing on a daily basis in this new frontier of post-COVID-19? We cannot be expecting or counting on communities such as the disability community to be resilient because they simply won’t have the information.
Dawn Skaggs: So in order to break down some of those barriers, we need to start with our communication strategies and make sure that they are reaching all of the community groups, including the disability community and various other subgroups that we see in all of our geographic communities. We don’t want to be recovering back. We don’t want to be recovering at all. We want to be taking the opportunity that we have in each disaster, even the pandemics to identify, how can we build a stronger community in general? And again, how can we look at what’s happening on a daily basis to maximize on that? How can we use our communication strategies and our new technology and the diversification and the pivoting that is being done in the community to more effectively bring our communities together? To more effectively address the needs of the disability communities? And really looking at, what is it going to look like in the future? Not, how do we go back to the way things were, but how can we improve?
Dawn Skaggs: And that essential assumption of an equitable respect of realizing that each and every individual, each and every community group, brings something to the table. And looking at the disability communities as leaders, as asset providers, as innovators, which they are.
Nicholas Love: Yes, yes. Thank you Dawn. So much to think about. Thank you so much for joining us today, Dawn. And thank you all for tuning in to today’s episode of What’s Up WID. Transcripts and ASL translations for today’s episodes are available on our website at http://www.wid.org/whats-up-wid. To paraphrase the words of one of our founders, Ed Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you. Have a good day.
> Kat: Our Accessibility Consulting Specialists work with our clients to operationalize inclusion by examining and recommending accessibility and disability inclusion policy and practices for both your company’s internal and external practices. Internally, WID works with our clients to increase their disability inclusion work practices, such as employment opportunities. implementing disability employee resource groups, accommodation policies, and auditing office systems with accessible technologies.
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