Being Heumann with Judy Heumann, an unrepentant memoir of a disability rights advocate.

Transcript

Speaker 1:  VR Workforce Studio.

Speaker 2:  She was able to work with a vocational rehab to find the company that’s working with her who understands that when she does get hot, she’s going to need to take some precautions to cool her body down.

Speaker 3:  4, 3, 2, 1

Speaker 4:  VR Workforce Studio, podcasting the sparks that ignite vocational rehabilitation through the inspiring stories of people with disabilities who have gone to work-

Speaker 5:  Tech support Jared speaking may I help you?

Speaker 6:  I’m in a position at Masco Cabinetry, and I’m a Supervisor

Speaker 4:  … as well as the professionals who have helped them.

Speaker 7:  A job but a career. You got to look at how life changing this is.

Speaker 4:  And the businesses who have filled their talent pipelines with workers that happen to have disabilities.

Speaker 8:  To help expand registered apprenticeship.

Speaker 4:  These are their stories.

Speaker 9:  Because there’s such a great story to tell about people with disabilities and-

Speaker 4:  Now here’s the host of the VR Workforce Studio, Rick Sizemore.

Rick:  Welcome to episode 80 of the VR Workforce Studio. On today’s show, Don’t Sweat it. Just imagine what it would be like if every time you exerted yourself, and your body heated up, you had no way of cooling down, and what that would mean for the kind of work you could do. Ectodermal dysplasia and vocational rehabilitation on today’s podcast.

Rick:  And later in the show, Judy Heumann discusses her new book, Being Heumann, was just out last week. An unrepentant memoir of a disability rights advocate. Now, this book, and I bought the last one off of the shelf the day after it was released, is truly a national treasure. Judy shares some of the highlights from Being Heumann, and we discuss what it was like to actually be there and take part in some of the most important disability rights events in history.

Rick:  Also, George Dennehy, that armless guitarist, on vocational rehabilitation’s national anthem, said to publish, or as my daughter might say, drop, in mid-April. George talks about recording this historic song, and what this new music video means for people with disabilities. And of course, Cheri Takemoto with our National Clearinghouse update.

Rick:  In the big inspiration showcase, Christina Brown, now a supervisor with CVS Health, is here to discuss her career path and life with ectodermal dysplasia. If you’ve never heard of it, you’re not alone. Rare disease day was celebrated February 29th this year, and the entire month of February focused on ectodermal dysplasia awareness. Here with her story of, Don’t Sweat it, Christina Brown. Welcome to the podcast.

Christina:  Hello.

Rick:  We’re so excited to have you here and talking with us today. Tell us about your job at CVS.

Christina:  I’m actually a shift supervisor for their front-end. I’m in the process of going to classes and getting trained to also get my pharmacy technician license, so I’ll be trained in all aspects of the store right now.

Rick:  That is very, very exciting. How did you wind up going to work at CVS? How did that happen?

Christina:  Well I started off as the intern, and after the four weeks was up, I was actually offered a job. And so I went from an intern, to cashier, to supervisor in a year. So-

Rick:  What about skills that you learned in the training program that got you ready for the job? What kind of skills did you learn?

Christina:  Just like you said, to talk properly and how to interview, face-to-face interviews, and computer skills and they just really helped with that. Especially when you do have certain disabilities, they really taught you how to make it be known, but not make it be all like, this is what it is, and try to make it sound like, I can’t do this or I can do this. They really help like, you can do this, whether you have disabilities or not. So it was just really nice that they had your back, I guess you can say.

Rick:  Tell us a little about your disability.

Christina:  Well, I am legally deaf. I do wear hearing aids in both ears. So that’s been a little bit challenging getting certain jobs. And I also have this called ectodermal dysplasia. It’s a very rare genetic disorder.

Rick:  How does this affect you?

Christina:  The ectodermal dysplasia is rare, there’s several different types of it. It was mostly not having a whole lot of sweat glands, is what made it more difficult for me.

Rick:  Yeah, because a lot of jobs are going to make you sweat.

Christina:  Yeah, but you know with this, as you grow older you are aware of what your body can and cannot handle. So there’s been times where some people were like, oh it’s warm, and I’m like, what are you talking about, it’s roasting, I need a break!

Rick:  Right, right.

Christina:  Because a lot of people aren’t aware that when you sweat that’s actually your body cooling itself down. So when you don’t have as many sweat glands, and you don’t sweat like normal people do, your body’s actually keeping that temperature in-

Rick:  You overheat. Right.

Christina:… and you’re more prone to have a heatstroke or something.

Rick:  Yeah.

Christina:  And like I said, there’s a lot of people have never heard of this thing. So anytime that I tell people and I’ll pull it up and show them, and they’re like, wow I’ve never heard of this. It is something, and people do need to be aware of it.

Rick:  Christina, that’s why your story is so important. You mentioned pulling up information online, which is the website for The National Foundation for Ectodermal Dysplasia. So we’ll continue your story, Christina, in just a minute, but let’s bring in Jodi Reinhardt. She’s the communications director at the National Foundation for Ectodermal Dysplasia. Joins us now from her office at the national headquarters. Welcome, Jodi.

Jodi:  Thank you so much, Rick. We’re happy to be a part of your podcast.

Rick:  What’s your reaction to Christina’s story?

Jodi:  I’m so happy for her that she has gotten the skills that she needed and found a job that she’s not only enjoying but that she’s finding success in.

Rick:  Yeah. Well we had rare disease day on the calendar, and from looking at your website, February does acknowledge ectodermal dysplasia for the whole month in an effort to raise awareness about this condition that’s pretty rare.

Jodi:  Because it is a rare condition, and we take the whole month to really focus on awareness, to try to get the word out, to explain to people exactly what these disorders are and how they do affect people. The ectodermal dysplasias are rare conditions and they are also heritable, meaning they can be passed from generation to generation. And essentially they cause the skin, hair, teeth, nails and sweat glands to not only develop abnormally, but to function abnormally as well.

Jodi:  And so the ectodermal dysplasias, is actually an umbrella term, and there are a hundred different varieties based on the combination of symptoms that a person who’s affected might have. Non-functioning sweat glands are one of the most common symptoms of the ectodermal dysplasias. And so we’ve been around for about 39 years and we’ve heard from our thousands of families who had the disorder, who have that particular trait, that they do have to be selective in terms of what kind of career path they’re going to go. And you know, we’re really grateful that she was able to work with the vocational rehab to find out about a career that works with her, and also with a company that’s working with her, who understands that when she does get hot, she’s going to need to take some precautions to cool her body down, since her sweat glands don’t do that for her.

Rick:  We’ve been talking with Jodi Reinhardt, who’s the director of marketing and communications for The National Foundation of Ectodermal Dysplasia. Thank you for being on the podcast, Jodi, thank you so much.

Jodi:  Thank you, Rick, for spreading awareness about ectodermal dysplasia.

Rick:  Well, Christina, you’re certainly not alone in this, and it’s nice to hear that bigger picture perspective, but if you would take us back to what was going on in your life before you connected with vocational rehabilitation.

Christina:  I did go through a period where I was without a job and when you’re a mom, you’re willing to do whatever just to take care of your child, and it was really difficult. It’s not that I couldn’t work, I was just limited on what I could and could not do.

Rick:  Right.

Christina:  And so I was getting flustered and that’s like I said, that’s when my aunt told me about the program and I was like, well I’ll give it a try. Within weeks, they had me in the door and they had me an internship ready and I’ve been going since.

Rick:  Well it sounds like the job at CVS is a perfect fit for you, given the obstacles that you’ve had getting employed. Tell us about an average day at work. What kind of things do you do?

Christina:  Well, it also really helps when you have a company that understands that you have a disability, and they don’t discriminate against you. As I get too hot, they allow me to go take an extra five minute break to go stand in a break room in front of a fan or air conditioner. So, that’s obviously fantastic. You know, opening the store and I get the morning office ready. And then I get the morning routine throughout the store ready, and of course I give the cashiers a list of things to do, and of course I take care of the customers. And it’s just an everyday retail store, but it’s just always busy. We’re always doing stuff and I really love it to be honest with you. It’s just like I said, an everyday routine retail, but it does help when you have a company that doesn’t discriminate against anybody. So-

Rick:  Tell us about your hopes of becoming a pharmacy technician.

Christina:  I still want to remain a supervisor and part of management, but I just want to open my career, and the pharmacy is part of the store and, well it’s a huge part of the store. And I don’t want to stop, I want to continue the ladder, I want to grow as much as possible. And if getting my license to further advance my career, then I’m going to do it. And then, once I remain a supervisor, if the girls in the back need my help, I’m able to-

Rick:  You can jump right in.

Christina:  … get back there and help. And we don’t see the customers as customers. I mean, I just, majority of every customer that comes through the door, I know them by first name, they know me, they ask how my son is, I ask how their family’s doing. I mean, it’s retail, you’re always going to have that one person in the bunch. But it’s true, if it wasn’t for our customers, we would not have our jobs, so we had to go above and beyond to make sure that they’re taken care of. And that’s just how the company is. I mean, we’re not perfect, but we try our hardest to make our customers feel appreciated.

Rick:  Christina Brown is the supervisor at the local CVS. Thank you for being on our podcast today.

Christina:  Thank you.

Rick:  Well, the rerelease of VRs national anthem, originally written in 2003 by Ralph Pacinelli, is set for mid-April of this year on iTunes and on YouTube. George Dennehy, the armless guitarist, featured along with several other professional musicians, and the voices of rehabilitation choir.

Rick:  (singing) – Lead on lead on VR…..Lead on lead on VR……

Rick:  There’s a lot excitement about this song. There’ll be more on next month’s episode. We caught up with George at the Passion Academy in Richmond, Virginia. The day he recorded the vocal tracks for the anthem.

George Dennehy:  Yeah, so we just finished up recording this song, and I was so honored, and I am so honored to be a part of this project, and what it means to people all around the country and around the state and everywhere. I know being a part of VR holds a special place in my heart. So I’m just excited about the song and excited about where it’s going to go.

Rick:  Be sure and join us in April for the release of VRs national anthem. We’re so pleased to welcome one of the world’s leading disability advocates recognized for her contributions over the past five decades, and her work on policy and legislation that’s had a profound effect on the lives of people with disabilities in education and employment, with a list of accolades and accomplishments too long to cover in this show. She’s been a special advisor for international disability rights in the White House from 2010 to 2017, as well as the Assistant Secretary of Education for Special Education and Rehabilitative Services from 1993 to 2001. Through her work with the World Bank and the State Department, she helped develop disability rights internationally. Here to talk about her new book, Being Heumann, and the upcoming Netflix film, Crip Camp, is Judy Heumann. Welcome to the podcast, Judy.

Judy Heumann:  Thank you so much, Rick, for having me on.

Rick:  It is just an honor to have you on this podcast. I’ve followed you for years and finally we have the opportunity to talk. Let’s start with the book, Being Heumann, referred to as an unrepentant memoir of a disability rights advocate, and by the way, this book is flying off the shelves. It’s only been out a few days, I picked up a copy yesterday and literally could not put it down, start to finish. So if you’re a person with a disability, a family member, or involved with the disability community in any way, you have to read this book. Now, Judy, this book and your personal accounts give us some of the most compelling stories in history of disability rights from your perspective as a person who was there at key events. It’s a treasure.

Judy Heumann:  Thank you. For me, what was important, I wrote this book with a woman named Kristen Joiner, and what was important to me as we were developing this book, is that my stories be as authentic and comprehensive as possible, because I know that listeners and readers like to really get more granular, which is what I’ve tried to do. Because emotionally, for myself and for readers, I think really delving into different stories and how those stories impacted you, positively or negatively, I think is an important part of evolution of the disability movement. Any movement really where people can dig deep and be able to talk about barriers that they’ve experienced and overcome and how that’s happened.

Rick:  We’re on the same wavelength. I wanted to drill into a couple of occurrences in your life that you discussed in the book. It was great to read about how you grew up and developed this powerful presence that enabled you to be effective as an advocate. But for me, the book really begins when you’re about 25 years old, living in Brooklyn, one afternoon you’re pouring through this proposed legislation, and found a sentence in Section 504 that you just couldn’t believe. You said you had to read it several times. Tell us about that moment.

Judy Heumann:  So, there is a provision in the Rehabilitation Act of 1973 as amended, for those of you who are history wonks, in something called Title 5, and Section 504. Some people may know Section 504, if you have a child, or you are a youth with a disability who didn’t have an IEP plan, but got a 504 plan, or used it in other ways. But basically, Section 504 was the first major anti-discrimination law, which said that you couldn’t discriminate against someone with disability if the entity was a recipient of money from the federal government. Meaning public schools, community colleges, universities, healthcare centers, hospitals, county government, city government, on and on. Anything getting money from the federal government. So, it was really a happy surprise to see this language. Although President Nixon at that time had vetoed the law, so that was one of the issues we were looking at was what was going to be the impact of the vetoing of this legislation.

Rick:  Right, but it seems like a moment when things really crystallized for you, and you saw this opportunity to look at the disability movement through the civil rights aspect of it because some folks had snuck it in.

Judy Heumann:  So, I was involved in helping to set up an organization in New York in 1970, called Disabled In Action, and we were a cross-disability organization. And we actually had organized with some other disability rights organizations, demonstrations against the next administration when this rehab act was vetoed. And Section 504 was one of the reasons why we decided that we were going to have demonstrations, because in addition to the fact that the provisions in the law for rehabilitation services were being affected, we also very much felt that discrimination against disabled individuals in many areas, that including in the area of employment, was something that needed to be addressed.

Rick:  Yeah. Let’s set the stage for what had to be a powerful moment in your life, at the federal building out in San Francisco, April 5, 1977, a famous experience in your journey. Some refer to that as the beginning of the 504 sit-in. You were there protesting the fact that the Secretary of Health, Education, and Welfare had not signed the 504 regs and found yourself onstage outside the federal building in front of a capacity crowd. And you started a chant. Tell us about that chant and take us back to that afternoon, and what happened over the next 28 days.

Judy Heumann:  So, let me step back a little bit. In 1975 an organization called the American Coalition of Citizens with Disabilities had been organized and founded. It was a first national cross-disability organization. One of the reasons for its formation, was that the regulations for Section 504, which the law had finally been signed in 1973, but there was a need for regulations, which are basically rules that explain the provision of law. Section 504 had about 42 words in it. And this was the provision that said you couldn’t discriminate against someone with a disability in any program receiving monies from the federal government.

Judy Heumann:  So the American Coalition of Citizens with Disabilities starts in 1975, it’s working over a two year period of time, with the first Nixon administration on the development of the regulations. And then when Carter was elected president, we had been told that the draft of the regulations would be signed. In February of 1977, ACCD held the board meeting, I was on the board, I was secretary on the board. And I introduced a motion that said if the regulations were not signed by April 5th, then we should organize demonstrations around the country. The board agreed to that, and so across the country, members of this coalition began to plan for what could be demonstrations. If the regulations had been signed, there wouldn’t have been any. And people in DC and in the Bay Area were involved with helping to get these regulations moved forward and signed off by the then secretary, Califano.

Judy Heumann:  It was very clear that those regulations were not going to be signed by April 5th. So, in the Bay Area we had set up a committee that was composed of disabled individuals from centers for independent living and many different organizations, that believed strongly that the regulations needed to be signed and we were all very concerned that the lull in signing the regulations was because Secretary Califano, who had worked as a lobbyist for many different organizations, was going to water down the regulations.

Judy Heumann:  So, on April 5th, regulations hadn’t been signed. We in the Bay Area led a demonstration that was composed of disabled individuals with different types of disabilities. But as you were saying, because we’ve been very influenced by the civil rights movement, at the local level we had been working with other civil rights organizations that were not disability specific, and got them involved in the organizing of the rally on the 5th of April, protesting the failure to sign.

Judy Heumann:  When I got up to speak, there were many speakers. The chant that we were leading was, sign 504 now. At the end of the rally, there had been an agreement between the Department of Health, Education and Welfare, that they would be a group of us going inside to have a meeting to discuss with the regional director what was going on. And we went in and we had this meeting, and the reason why we ultimately stayed for 28 days was that his name was Maldonado. Director Maldonado, very nice guy. But he was completely, completely unprepared for our meeting. He knew nothing about 504. He knew nothing about the regulations, even nothing about what the problem was. So a group of us decided to stay and the group wound up being about 150 people. And a small group of us a week or so into the demonstrations, went to Washington, to join up with other people, to protest in DC the failure of the regulations being signed. And they ultimately were signed, the way we wanted them to be signed.

Rick:  Amazing resolve and tenacity that has affected hundreds of thousands, if not millions, of people since that time in such a positive way. Again, you have to read the book to get all the details about what happened, but a powerful, powerful reflection on the work that you’ve done. I’d like to talk about-

Judy Heumann:  People can get the book. They can order it on Indie books, or Barnes and Noble, or Amazon.

Rick:  Later this year, it will be available in audible, I think around the 5th of May, so you might want to check that out. We’ll also include a link from, I believe the publisher, so you could sign up to potentially get one of five copies that we’ll give away. What I want to know is how I’m going to get my copy signed. Should I mail that to you or… I want your signature on my copy of this book but-

Judy Heumann:  I suppose if you mail it to me with a return envelope, I can do that.

Rick:  The movie is Crip Camp, a film that premiered at the Sundance Film Festival, and is available in Netflix on March of 2020. The movie is about Camp Jened, a summer camp for kids with special needs in the 70s. Judy was a camper there for many summers, but we’re unfortunately out of time today, Judy. We’d love to have you back next month to talk about the film, what it was like seeing it at Sundance and how the camp influenced your life. We’ll see you back here next month?

Judy Heumann:  Thank you, I look forward to that.

Rick:  Thanks so much. Well, it’s time for our National Clearinghouse update with our good friend, Cheri Takemoto. Welcome to the podcast, Cheri.

Cheri:  Thank you.

Rick:  Exciting times in voc rehab.

Cheri:  Yes, and this podcast is especially exciting.

Rick:  CVS, it’s just so cool.

Cheri:  Yes, and they’re employing everybody and I love this video, that I’m going to put in the show notes, because it talks about not only those entry level positions that people talk about in retail, but also professional positions. It’s all about where we’ve come from and where we’re going. And this podcast is so interesting because of that. So I thought I’d share something from the Rehab Research Training Center on employer practices about how about 20% of people with ID/DD are now competitively employed. And that’s the good news. But the great news is that States like Vermont, Connecticut, Michigan, Oregon, Nebraska, Idaho and Nevada, in those States, the number’s over 50%-

Rick:  Wow.

Cheri: … so we can do better. Yep, we can. And so, there is some information about what we need to do better. And one of them is, I’m thinking about training. So I have our motivational interviewing training available for free. This came from Oregon VR and it’s especially for motivational interviewing for people with intellectual and developmental disabilities. As well as the new thing, is something called supported decision-making. And the National Association of State Directors of Developmental Disabilities Services, got together with ICI to develop a framework for that self-determination. And what’s even more cool is that the members of the Self Advocates Becoming Empowered, or SABE, and the Green Mountain Self-Advocates, GMSA, reviewed that paper and provided their own response. And I’m especially focusing on developmental disabilities, because March is also, in addition to everything else, is Developmental Disabilities Awareness Month.

Rick:  Always a pleasure to have you on the podcast Cheri.

Cheri: Yah!

Rick:  Here’s Lynn Harris, director of the Wilson Workforce Rehabilitation Center Foundation.

Lynn Harris:  The foundation is so pleased to bring you these exciting stories of how vocational rehabilitation is changing people’s lives, by helping them gain the skills and credentials they need to be successful in business and industry. We thank all of our partners in podcasting who made this episode possible. ABLEnow, Aladdin Foods, The Council of State Administrators of Vocational Rehabilitation, CVS Health, and The Hershey Company. You can find out more by visiting us at wwrcf.org or find our contact information in the show notes at vrworkforcestudio.com

Rick:  That’s all for today’s show. We’ll see you back here next month for another episode of the VR Workforce Studio.

Announcer:  The VR Workforce Studio podcast is owned and operated by the Wilson Workforce and Rehabilitation Center Foundation. The foundation publishes and distributes the VR Workforce Studio and manages all sponsor arrangements. Audio content for the podcast is provided to the Wilson Workforce and Rehabilitation Center Foundation by the Virginia Department for Aging and Rehabilitative Services in exchange for promotional considerations.

End Transcript

This episode is dedicated to the life and times of Jim Wark, who passed away in February 2020 in Richmond, Virginia.  Jim was a tireless servant of people with disabilities and helped this podcast through his work at Virginia Voice. We express our sincere and heart-felt condolences to Jim’s family and to his colleagues at Virginia Voice and members of the community that he served so well for so many years.