Mission of Variety the Children's Charity

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, Happy Thanksgiving to all of you. I wish all of you and your families a very, very blessed and happy Thanksgiving. And then I wish always, always good blessings to all of my listeners around the world, from China to Saudi Arabia, largest in China. You know, I'm going to be speaking tomorrow— not tomorrow, I'm sorry, that's— I'm going to be speaking December 3rd to Nigeria doing a program for them myself and the State Department, not on the show, but we're going to have a lot of social media out so that everyone can hear when that is going to be happening. But my point I want to make is whether you're in Nigeria, Tunisia, Libya, one person, one, listening to this show can make a difference because you tell someone else and they tell someone else and everyone finds out people with disabilities count. People with disabilities have dignity. People with disabilities can work. You have to help me spread that news. And Richard Roberts from the U.S. State Department, my good friend, who was with me in South Korea and Okinawa. Special greetings. You know how much I love you. And Gang Young in South Korea and Venyamin in Kazakhstan and Cheryl Harris in Tunisia. I just want to tell you, all these people from the State Department, what happens is if people go to an embassy somewhere in the world and request me go there. Again, with the Embassy, who I'm with the whole time, we plan programs, whether it's at universities, high schools, disability rights groups, everywhere. And I stay for a week and I speak all across the country. And, and it is just the most wonderful thing. And it is all orchestrated by by many of the people I just told you about right now. So love all of you. Thank you so much. I look every week at what countries have been listening to the show, and it just means so much to me. So thank you, and thank you to all my friends around the world. And here I come, Yoshiko, here I come. Special shout out to Yoshiko. Dart. Yoshiko, I wish you a very happy Thanksgiving. And this is the reason I always, for the past several years, do this on every show. Yoshiko was married to Justin Dart, who passed away several years ago, and Justin Dart Jr. is the general of the ADA. I always call him— he's like our Martin Luther King Jr. I mean, he was such a great civil rights leader for those of us living with disabilities. Well, here's the thing. This isn't taught in history class. And we have to have a way to remember our history for people with disabilities. And that is why I say special shout-out to Yoshiko every single week. So that we all remember Justin Dart, what he did for us, and that his spirit, of course, is still with us. And finally, thank you, Highmark. This company is so awesome. They really are. They have been the lead sponsor of this show for years. All of their executives have been on the show. Most recently Deb Bryce Johnson, the president of Highmark Inc., who is a wonderful, wonderful person, but from the CEO David Holmberg, right across the board, they've all been on, and they are all about employing people with disabilities. And may I say, David Holmberg, the CEO of Highmark, next March will be receiving prestigious Corporate Champion Award for the work he has done employing people with disabilities and Highmark has done since I founded the company in 1995. So thank you, Highmark, for sponsoring this show. And actually, our guest today, who I love very much and is a very close friend of mine and so many people knows some of those people very well that I just talked about. And I got to tell you before I introduce him, this man is the real deal, okay? You know, he means— he loves people. He loves children with disabilities. He has just incredible joyful spirit and love, and he is helping us change what's happening right here in my hometown of Pittsburgh, Pennsylvania, with Variety, the Children's Charity. Uh, welcome to the show, Charlie Lavallee, Chief Executive Officer. Welcome, Charlie.

Thanks, Joyce Bender. As you know, I still prefer to be the Chief Excitement Officer for our kids.

Chief Excitement Officer he is. That is a great title. That is him, Chief Excitement Officer. And you have done so much. Let's see, throughout Pennsylvania and parts of West Virginia. Is that correct?

We're in 71 counties now, from 10 to 71 counties.

Wow. Wow, that is so amazing. Well, since as you heard me talk about people that listen to this show, on a regular basis around the world. I thought we could start by you sharing your story, your short story. You know, how did it start and how did you end up going from that school, college to Variety?

Well, it has been an exciting journey, and I think the person who shaped me most in my life was my grandfather. And he was an immigrant and raised 3 kids by himself as my grandmother spent 50+ years in, uh, Mayview State Hospital, whatever happened to her in the early 1930s after the birth of their third child. And so the man I admired the most raised 3 kids, had a new business, and of the many lessons, I mean, he just loved me totally. And we all need people in our lives who just love us. Totally, or in our corner. But one of the lessons that has stayed with me that relates to the work we're doing at Variety, he said to me many times, but he said, "There's only one thing you need to know about doing the right thing." And I said anxiously, "What is it?" expecting it to be some long answer. He said, "It's the right thing. You don't need to worry about whether it's popular or politically correct or anything. Just do the right thing. And I think, Joyce, you're a testimony to that in terms of all you're doing for people with disabilities and making sure there's a pathway to a job and a future. You're doing the right thing, and everybody should have that opportunity to work and what that work brings into their lives. So thank you to you for embodying that so much. Let's do the the right thing.

What a great story from your grandfather. How true those words are.

So true they are. So I got to work in the bakery with him. And, um, for those of you who, um, have these kind of experiences, I had to be at work at 3 o'clock AM before I went to Carnegie Mellon University in my baker clothes smelling of donuts. And, um, I came in one time at 2:40, at 3 o'clock on the nose, and he said to me, 'You're late.' I said, 'No, no, no, sir, it's 3 o'clock.' He said, 'You're supposed to be working at 3 o'clock.' And then he says to me, 'Are you going to embarrass me this way in front of our employees? Because everybody knows I love you more than I love my very own life.' I was crushed at 17. From then on, 2:45, so now 50 years later, people say to me, "How come you're always on time? How come you're always early for meetings?" I say, "Well, let's go back 50 years till I was taken to school." But he exemplified all the values for me. He cared for anybody who was in need, and it was a great— I was privileged to have that experience. And so that having that into my fiber was being built into my fiber. I didn't know it was. At the time I was growing, but well, well, to have someone who sets the pace.

Yeah, you were saying from there to Carnegie Mellon, what was like, when in your life were you working at that bakery?

What did you say, Joyce?

Joyce, when were you working at the bakery? What time of your life was that?

Oh yeah, through college. Yeah, so I would go right, I would be at the bakery at 3 AM and then I would go to Carnegie Mellon. It's— I started at age 17 when I started college. I would go right to classes in my baker clothes, and I had to bring glazed donuts for 4 years on the Monday, Wednesday, Friday schedule. On Tuesday, Thursday, my friends waited outside my first class for donuts every day.

Wow.

But you know, the bakery taught me something. Well, the bakery taught me something about my family that I couldn't learn at Carnegie Mellon. They gave me this wonderful education, and I learned that from watching them. My grandfather and my mom worked 14 hours a day, 6 days a week in our family business so that I could get a college education. So, you know, you have that in your soul, and you feel like you want to make a difference for those who have invested so much in your life.

Yeah, yeah. Well, you, uh, I mean, what a story though, going from the bakery to Carnegie Mellon. That is quite a thing to envision. That would be you.

Thinking up every classroom with glazed donuts.

Oh my goodness gracious. Well, you were popular.

Yeah.

Like the donuts were popular. Okay, so then what happened after CMU?

Well, I spent a decade working in campus ministry, and that was a wonderful experience, and I loved it. And then After that, one of my good friends approached me about coming to do a— work on a new program at what was then Blue Cross of Western Pennsylvania, which as you have now noted is now called Highmark, and it was providing healthcare coverage to uninsured kids. It was the first of its kind in the nation, the Caring Program for Children, and it was Mr. Rogers, who approached me about going to Blue Cross, and I did kid him and say, "That wasn't really the cross I had in mind at the time." And because he was an ordained Presbyterian minister, if your listeners don't know, and so much emanated from his faith and what he felt and believed. And so I'm so glad I went because, as you have highlighted, hi, Mark. They created the first program in the nation for uninsured kids from working uninsured families, and that was replicated in 25 states. And then that became the model for the Pennsylvania Children's Health Insurance Program, which became the model for the federal Children's Health Insurance Program, which has now helped more than 200 million children. So what a privilege—

isn't that amazing— to be involved Yeah, yeah, I don't even know Joyce Bender. Wow, that is so exciting. Yeah, that is, and that doesn't surprise me either about, uh, Mr. Rogers being an ordained Presbyterian minister, because all you— when you think of him, you think of love, you think of love, kindness, uh, I mean, just humility. He's just, uh really, we're lucky that we can say he too was a Pittsburgher, that he too is from this city. We have so many great things that happened, you know, right here. Well, then what happened, Charlie? What happened after, uh, you worked with the CHIP program at the Caring Place?

Then what? Well, yeah, we were fortunate, you know, life brings tragedy to all of us. And there is adversity. It's how life is, as you know too well. And so what happened while I was still at Highmark, when we got the funding, the cigarette tax is what funds the Children's Health Insurance Program. And so we had a public sector funding. We didn't have to go out philanthropically and raise money from the churches and the Kiwanis and the civic organizations and the foundations anymore. So I said to the staff, let's look for some other unmet need of children. Well, and sometimes, you know, your personal and professional life collide. And my stepson had a tragic accident at age 21 and died. And Fred Rogers was not an advice giver, and I can't remember any time in our decades-long relationship that he gave me advice. But this time he said to me, and I'll never forget it, he said, Charlie, take your heartache and do something with it. To do something with it. And I thought, I don't know if I can. I mean, it was crushing burying a 21-year-old, and I had a 4-year-old at home, and it was just— it felt overwhelming. But, um, I trusted Fred more than anybody else, and I gave thought to it. And so we ended up creating what's called the Highmark Caring Place, which is the center for grieving children. And Highmark now has 4 of them, and Pittsburgh and Harrisburg and Erie and, and Warrendale. And it's become the leading model in the nation for kids who've had a death. It's a support group model because we know when you're grieving, it doesn't mean you have— that you're having mental health issues. You just need support. Some people need therapy, but most of us, our heart's broken. When you really love someone, as you know, you love someone and they die, your heart's broken. That's the natural pathway. And back then in the '90s in Pennsylvania, we had no model. We had no place for kids to go. I mean, when you step back and look at it, what could we possibly be thinking? Children are having their parents die, their siblings die, their grandparents die. They need to have support of other kids. If my son Daniel, who was 4 when his brother died, if he was on with us right now, He would say, "The Caring Place helped me know that I wasn't alone." Well, how important is that when you're grieving? To know you're not alone, you're not the only one going through having what Daniel called at age 4 a big loss, and, um, age 6 it was a big loss. And, um, so I feel so blessed, as you highlighted, Haimark, to have worked at a company that did so much for children and Providing healthcare coverage for uninsured kids, well, you could say that was in, you know, that was what the company was there for, but to pioneer the way for grieving children, more credit to all of them, Deb and David Holmberg and the whole team that's there and what they're doing to have made the leading model in the nation. And I don't know that I ever would have thought I would get here, But one of the former CEOs of Highmark called me up about coming to Variety because we'd had a grant for kids with special healthcare needs when I was at Highmark. And so 9 years ago, I was fortunate enough to come to Variety with people like you on the board. And we wanted to see what we could do for kids with disabilities and special needs. And as you know, once again, they're too often left out of the conversation. They're not focused as they should be.

So yeah, that is right. So often, sadly. But you're doing something about that. So before we go on to that, as you mentioned, you were a close friend of Mr. Rogers. What you talked about, what your father— grandfather taught you, what are some of the key lessons you learned from him, from Mr. Rogers? Not everyone— few people actually had the great privilege you had of knowing him and being close to him. What did you learn from him?

Well, Joyce, even that principle that he said to me about take your heartache and do something with it, if we think about it, he wasn't trying to teach me. He, he was trying to walk with me. And what I loved about Fred was he walked with me in the pain. There were dark moments, very dark moments. And I was very fortunate that he walked with me. And we often read an author book by— his name was called Henry Nouwen. He was a Catholic priest, and actually Henry ended his life working at L'Arche, which is a community for people with disabilities. And, um, but he was there with me, which was very powerful. You know, he didn't have any easy answers— just do this. He didn't minimize the loss. He was there. And so that lesson I think that's what the families we're serving at Variety do all the time. They're taking the adversity and they're doing something with it. Like whether they're working with us to get their child a communication device or a bike. So that's one. Probably another one that really stands out for me about Fred, and he said this many times and I loved it. He said, "The only unique gift you have to give 'Your authentic self. The only unique gift you have to give is your authentic self.' And I think that's a good call to all of us, to be real and not pretend. And sometimes life, you know, has difficult moments. Sometimes it has joyful moments. Sometimes silly moments. I can still hear his silly little laughs. He kept his childhood alive inside himself. And I mean, his When we would put him on television for either the Caring Program and uninsured kids, CHIP, or for the Caring Place, the phones would ring off the hook because if Mr. Rogers said do something, people would do it. And I think we should go back to all of us striving to try to be authentic. And sometimes it's not pretty. You know, sometimes when our heart's broken, you know, those are hard moments. So, you know, that was one. And then the last thing I guess I'd say about Fred, just as a reminder, people often said, they, you know, who's our next Fred Rogers? Or, you know, be like Fred. Well, I think there's another lesson. The person who shaped so much of him was his grandfather. And maybe it's worth taking a step back. We might not all be like Mr. Rogers, but maybe we're the grandfather who does something that nurtures a Fred Rogers, you know, and that was always a lesson that stayed with me that, you know, people often say it. I used to do these talks about Mr. Rogers and I always wanted to highlight how much his grandfather shaped his life because maybe we could all be the grandfather. We're shaping someone else's life and even with disabilities, you know, he would remind us Everyone has disabilities, just some are more obvious than others.

So none of us are— yeah, yep, that's so true too. Well, now for— oh, I love to talk about this, especially during Thanksgiving, a time to give thanks. And when you listen to the show today, I hope you will make sure you go to the website that I'll have Charlie mention here in a little bit. But just to see the great thing that's happening at Variety, the Children's Charity. And it started differently than it is today. Different people have asked me that. It is amazing how this, this came to be. But would you mind sharing that story? Because it is a great story on how Variety started.

Absolutely. So in Pittsburgh, here in Pennsylvania, um, that Variety was founded by a group of 11 showmen, and they were in the entertainment industry, and it was really a social club too. And then they would make gifts, but it was a social club. And then in 1928, in the Sheridan theater. They're all playing cards backstage in between shows, and they hear some whimpering out of the auditorium. They go in and they check, and they find a 1-month-old baby with a note. And the note says— this is 1 month old, think about this, we're almost 2 Thanksgivings— he was She was born then. And so the note says, please take care of my baby. Her name is Catherine. I can no longer take care of her. I have 8 others. My husband's out of work. She was born on Thanksgiving Day. I've always heard of the goodness of show business people, and I pray to God that you will look after her. So these 11 men were inspired. They became her, quote, her godfathers, and they adopted her. And but I think there's that principle that Fred was talking about. I can't imagine the heartbreak of that mother to leave her 1-month-old on Christmas Eve after her baby was born on Thanksgiving and she couldn't take care of her. How awful that must have felt. Well, here we go. These 11 godfathers adopted her, and, and the mom said her name is Catherine, and they named her Catherine Variety Sheridan. Variety after their Social Club, Sheridan after the name of the theater she was left in. And they focused in the beginning on children who, you know, needed adoption and, and, um, uh, were alone. And that's where it started. Its roots were with Catherine, as Fred said, the heartbreak. And now it's an international organization with a network of like 42 chapters in 13 countries and, you know, over $2 billion of services to children in need throughout the world. So what a beautiful testimony again to if we look at life a little differently and do the right thing like those, those initial 8 men did, and it gave birth to something that's having a lasting impact around the world. And so it's beautiful as they focused on adoption and orphans and now how we've really changed the mission now over the past so many decades to be focusing on kids with disabilities.

And it's such a wonderful thing. It really is. It is a wonderful thing. And it's a wonderful program. Charlie, what is the website?

Variety Pittsburgh. V-I-T-T-S-B-U-R-G-H, sometimes people leave the H off, varietypittsburgh.org, and the history is there and our programs are there. And I would encourage people to look because I think what I have learned that you know so well is we don't really understand, the typical person doesn't typically understand the challenges that our kids face and their families face. In many ways, unless you have a disability or you're raising a child with disabilities, you really don't know. Like, I think I get to FaceTime with my sister-in-law who's 53 and has Down syndrome and some challenges as well. But I can tell you, she can't say Charlie because of her— some of her communication challenges. But we FaceTime every night. She calls me Charlene, and I want to be Charlene all my life to her. She's so happy. Charlene, how are you? She's shouting. FaceTime. But she's an example to me because she's so sincere with her love. She shares her happiness to see me every night like she hadn't seen me for a month.

And I think that maybe we should all be like her. I know, that is so beautiful.

The wrong way. She's the one who's got the spirit of beauty.

Yeah, she does.

So feel free to call me Charlene anytime.

Well, Charlie, we're going to take a break. We're going to take our news break on the half hour with Perry Jude Radesik, um, who I just love so much. Perry, are you with us?

Joyce, I am. Can you hear me?

I can. Happy Thanksgiving.

Same to you. Happy Thanksgiving to you and to Charlie and all your listeners.

Thank you very much. So Perry, Joyce Bender. What news do you have for us today?

Yeah, this is a little bit different. It's not really following Congress or state legislatures today, but it's a lawsuit that I want to talk about that was filed by Disability Rights Pennsylvania. And following a settlement agreement, removable medical equipment— so important— wheelchair ramps, wheelchair lifts, ceiling lifts, air glides are now covered under Medicaid for Pennsylvania children and adults with mobility impairments. This is a big deal. The lawsuit was filed on behalf of a class of children back in June of 2018. It was called BB versus Miller. And it alleged that our Pennsylvania Department of Human Services violated a law called the Early and Periodic Screening Diagnostic and Treatment Provisions of the Social Security Act. And we alleged that they were violating that law because they were denying requests for medically necessary removable equipment. So here's what's happening. The U.S. District Court for the Middle District of Pennsylvania is having a public hearing on December 17th at 11:00 AM to decide whether to approve a settlement agreement between the class and the Department of Human Services. So any family member or individual with disabilities who are impacted by this lawsuit, by the Medicaid lawsuit, can write a letter or email their opinion about the settlement agreement if they decide they don't wanna show up at the courthouse to testify for the hearing. Disability Rights Pennsylvania is collecting the information to give to the court. Now, it's important because, again, this expands medically necessary removable equipment like wheelchair ramps, wheelchair lifts, ceiling lifts, stair glides for children and adults who are on Medicaid in Pennsylvania. So it's a big decision for the court to approve the settlement agreement. It's important to know that the Human Services Department here in Pennsylvania is now providing this coverage, and the installation of these devices is also covered. So it's not just the device itself, but it's also the installation. So here at Advocacy Matters, it's important to know that the fair hearing letters were mailed to over 11,000 families of eligible children in Pennsylvania in this class. But if you know of any eligible child or adult with a mobility impairment in the Medicaid system in Pennsylvania, Pennsylvania, please have them contact Disability Rights Pennsylvania for more detailed information and to offer their opinion about the settlement agreement. Our phone number is 800-692-7443. And also, if you go to our website at disabilityrightspa.org and you click on today's Advocacy Matters segment You will find more information about the settlement agreement and the class notice that was sent out to the 11,000 families. So it's an important settlement agreement that's in front of the judge in December, Joyce, and we wanted your listeners to know about it.

Well, thank you so much. And if they go to, uh, disabilityrightspa.org, they can go to Advocacy Matters and read more about this, right? Absolutely. Okay, that's good, that's very good. Well, you know what, I'm really glad that you reviewed this with everyone and our listeners today. And you know, if you're listening and you know someone else that needs to know, remember disabilityrightspa.org and go to Advocacy Matters. Perry, thank you so much. Can't wait to talk to you next week, and have a wonderful Thanksgiving.

You too, Joyce Bender. Happy Thanksgiving.

Bye-bye. We like to keep everyone apprised of what's going on in the news, Charlie, so the people with disabilities know they have a place to go where they can hear what's going on. So that's why we do that every week. So, Charlie, yeah, that's so terrific. Yeah, what is Variety, the Children's Charity, today? From— I think you told me before it was for orphans, is that right?

In the beginning, yep, back in 1928. Well, it's Perry's— you're interviewing Perry was a perfect segue. So what Variety is doing now is focusing on the mobility and communication needs of kids with disabilities. And again, I'm not being critical of anyone because I've learned so much myself over the past 9 years by listening to the parents and the kids. But what we found was happening was, for example, we started with the adaptive bikes, a program we call the My Bike program, because what we heard from parents was— and I know you really believe in this— their kids were being left out. They weren't included. They're sitting on the porch in spring, summer, fall. Everybody else in the neighborhood is out riding their bikes and having fun., and being with their friends and their siblings and going on family walks, and they're a part of it. They're included. And I think if those of us who were raised with typical, no mobility challenges, if we look back, we're going to remember our first bike and how, who we rode with. I can think of my oldest friend who was a U.S. attorney. We rode our bikes all over. Down to the bakery, you know, from Shadyside to Oakland, and it was just part of life. But for our kids, a variety— and I know you really drive home the point of being included and how important it is—

well, you couldn't be more right.

I can't tell you how many times I've heard the mothers and dads are crying because their kids are left out just because they can't ride a typical bike. So to be able to get them on these adaptive bikes, which doesn't matter, it's something they can ride and master, they're included, they're part of it. And that's made such a difference for these kids. And the joy when you see a child, for example, lifted out of a power wheelchair by his or her parents at 16, and I'm thinking of this one boy in particular, riding his bike in this bike parade we did, and he is grinning like crazy, and mom is walking behind sobbing because she never saw her 16-year-old ride a bike, and she never thought she would. And so really, to give the kids a chance to master something, feel good about themselves, but to the point you have made over and over again, it is important to be included. It is important to feel like you belong.. And so I didn't know how massive these bikes were going to be, but the families have just absolutely loved them and talked about how it's transformed their child's life. And sometimes, sometimes it's a little funny. We also give them a stationary stand so they could ride inside, so they could get like therapy and exercise all year long. And I gave this one boy, he was 8, and his mom, um, single parent, she takes the bike home, they ride all afternoon, but then she calls me up in the evening and she's kind of whispering. And I said, what's going on? She said, Charlie, remember how I told you all he wants to do is watch TV? He doesn't want to get the exercise and therapy he needs. I said, yeah. She said, so when we got home, we rode outside And then we get inside and we had some dinner, and he says, 'Mom, can I watch TV?' And I said, 'Sure, as long as you're riding the bike.' He gives me— and this is where she's whispering— he gives me this 'I'm getting over on Mom' look. So he's riding the bike watching TV, and she's giggling on the phone whispering with me, 'He's getting the exercise he needs, and the whole time he thinks he's getting over on me.' Oh, that is so sweet.

Yeah, that's because Just what you said though. If you're left out, if you see other kids on a bike, if you see other kids laughing when they're with their friends playing and riding their bikes together and you're not able, well, you're excluded, you're left out. And that is why— see, so you all understand, my bike for kids with disabilities is adaptive according to their disability. And now For the first time, there are kids that never could ride a bike, but now they can with, with this program. And it is a phenomenal program. We have another program called My Voice. I know you have a great story that goes with that, Charlie. So first tell everyone what My Voice is, and then you could tell that story about how it changed someone's life forever.

Well, again, what happened was in listening to the parents, and I think that's an important principle. We should start by listening to those we're trying to serve. We don't always have to come from a research perspective. Nothing wrong with research, but we should listen first and foremost to those we're trying to serve and not make assumptions that we know what is best. So what happened was I had a mom who started it with me And she said, Charlie, can I tell you— her daughter got a bike at age 7— could I tell you what— this is a year later— could I tell you what my daughter's teacher said?

I said, sure.

She said, the teacher said your daughter's using a communication device to tell stories in school. And she said, I want to tell you what I told the teacher. I've never heard my daughter 'Tell a story.' I would love to. And I said, 'Wait, stop. Could you tell me that again?' She said, 'Yeah, my daughter cannot communicate.' And so I said, 'Well, let me look into it and let me talk to some other parents.' And what I found honestly was brutal. And I think we have to start with— even though it's difficult to hear, I think we have to start again listening to what the parents tell us. And I can't tell you how many times I heard moms and dads say to me, Charlie, my child cannot communicate verbally. And they get so frustrated, and the meltdowns they have, like sometimes they pound their fist into their head. And sometimes before I can stop them, they run and pound their head off the wall because they can't get me to understand what they want to say.

Yeah, that's terrible.

Think about that. We We probably know people who've had a stroke and struggle to communicate. And so when I looked into it, what I found was in some places in some of our school districts, kids had to share it because there were tight financial requirements. So you got a voice for 45 minutes a day, or sometimes you could have a voice communication device, which is what MyVoice provides, is a communication device. You could have it in school, but you couldn't take it home. And I remember thinking, well, wait, wait, so the child can talk to the teacher all day, can talk to their peers all day, but they can't go home and talk to mom and dad, brothers and sisters, grandma and grandpa? Doesn't make— honestly, it doesn't make any sense. The need to communicate, the ability to communicate, to me, should be a basic right of everyone. Whether you do it through a communication device, whether you do it through sign language, whether you do it through your own voice, but everyone needs to communicate. And I think if we stop at this moment, every one of your listeners, if we stopped and asked, what would it be like if I or the people I've loved the most couldn't communicate, couldn't say I love you, couldn't say I'm in pain, couldn't say, you know, Tonight I'd like to have a hamburger instead of a hot dog. I mean, communication is part and parcel of living. We're doing it right now. We're talking over the phone, and your, your listeners are, are hearing us communicate. And I, I don't know how, quite frankly, in all honesty, how in the United States of America and other places around the world, how we can in any way in any shape say it's okay to allow that to happen. We need to make sure that every child can communicate, whether they do it through different systems, you know, whether it's through cards or whether it's, you know, through getting a communication device. We work very closely with a speech-language pathologist. I mean, things have changed now. The iPad's been out since 2010, and it could be adapted to be a communication device. Technology Joyce Bender Consulting does it so well, uses communication and adaptive means for people to be able to communicate and have jobs. I've heard the stories from some of your employees and people you've placed and how they can still have a great job and not be able to communicate verbally, but they have a device. A good friend of ours, Linda Dickerson, used a communication device. And so I think of all the things, we have to prioritize kids being able to communicate. And I think it's a human right, and I think we cannot stop until every child is able to communicate. One mother said to me one time, Charlie, I can help you understand. Her daughter was 4 and she was getting a communication device, and She said, um, but the preschool teacher called and said, Mom, can you come to school? Something's wrong. So she goes over there, she can tell something's wrong too, but they can't figure it out because she couldn't talk. They went to the doctor, a couple visits to the doctor, a full body scan. She had a fractured leg but couldn't talk, so she couldn't clearly articulate where her pain was. I mean, that should not happen. Kids need to be able to communicate, and I think we have to— going back to my grandfather— is it right? That's all we need to ask ourselves. Should every child have a way to communicate? Absolutely. And this has been probably the most— one of the most inspiring things I've ever had the privilege to be a part of. And this isn't the one you were thinking of, I think, but this story happened to me recently. We're giving this boy an adaptive bike. He's 8, and he already has a communication device. And Mom says to me, Charlie, do you know how hard potty training is? I said, yeah, we're in round 2 of it as grandparents now. She goes, but you can't imagine how hard it is with a child who's nonverbal. I said, well, tell me, help me understand. She goes, okay, well, Kevin recently— he's 8 too, another 8-year-old— he says he's pointing down below. Apparently I don't get the message. He gets his device out. She goes, that you gave him. It was my fault. She gets He gets the device out and he says, uses the communication device, which is an iPad that we've adapted with a special program thanks to the speech-language pathologist, and he says, "Mom, potty now." And then she chuckles. But she, but then she says, "Hear this. Later that same night, I say to him, 'I love you, buddy,' like I have many times. He gets his communication device." He orients himself to me with a device so that like he's looking at me, and he says using his communication device, 'I love you more.' And then he pushes the device aside. Oh, pushes the device aside and throws his arms around her neck. And she says to me, 'Charlie, that's the first time I ever heard I love you.' And he added the word more. I love you more. And shouldn't every mom have the chance to have their child say it? And shouldn't every child have the opportunity to express the love he or she feels for their parents or whoever? And that's so simple to me, but that's so critical to be able to express your feelings, the feelings of discomfort, but also the feelings of joy and love. And I mean, I think if we all stopped, how would it be like if our kids couldn't tell us they loved us or we couldn't say to them?

So when we can make this— about yourself, we should. What if you could not say I love you or anything for that matter? Think about that. It's like being in prison. That's why this is— this sets you free. Charlie, like, this is so important. How does someone make a donation if they want to donate to, uh, this cause?

They can go to our website. They can very easily do it right through the website varietypittsburgh.org. There's a tab there, place to donate. I mean, I think what's happened is in Pennsylvania, like we did with uninsured children, we're building a movement for kids with disabilities. And it's not just about giving equipment, it's building a movement because we could be part of something greater. I mean, I've often said to you, who knows, maybe we're helping a child right now that later is going to be facilitated into a job by Bender Consulting because we started them when they were young, right? And, and we're, we're giving communication devices down with, um, kids through early intervention, which is ages 3 and up. So if we can start them early and then they go through and maybe they become part of the Bender Leadership Academy if they're being bullied, and they can have that experience to bolster them. And then maybe— that's my dream— maybe one day they're calling Bender Consulting and Bender Consulting is placing them in a, in a job. And so they will have gone because we used the years where they were in school to really prepare them. And to help them get ready. And I think we just have to say to ourselves, this is non-negotiable. We will not accept living if we cannot get these kids the opportunity. Like, I know one of your dearest friends I was talking to recently, Tony Coelho, the author of ADA. And Tony said to me, you know, because he's championed jobs along with you, But he said to me, Charlie, I've often believed if you give us a chance to fail, we're going to succeed. But then this last line he said really hit me: if you don't give us a chance to fail, we have no chance. I said, Tony, that's what we're doing exactly with these bikes and communication devices. We're giving the kids a chance. We don't know where it's going to go, but we're seeing what's happening. Like, we had a boy who we gave a communication device to at age 6. He has autism. He only had 2 words. He used the communication device. First thing he asked his mother for was 2 hot dogs and strawberry milk, and it was beautiful. But then over 18 months, he went from 2 words to communication device. And we had this other press conference, and it fell on my birthday, and he sings me singing me happy birthday with his own voice. And if I lived 300, had 300 birthdays, I'll never forget him singing me happy birthday. And so I think Tony's so right. If we don't give a chance to fail, there's no chance. So if we don't provide these devices, we have no guarantee where they're going to go. Every child should have the right to see if this could give them the opportunity to communicate. And because there are things I was, I was glad to hear Perry, because in Pennsylvania, 21 is the age you have to matriculate from high school. You're done. And some of what I've noticed sometimes is that Kids who got a communication device through school have to turn it back in. I'll never forget one dad saying to me when his son was going to graduate, when we were giving his son the device, he was going to be graduating within 2 weeks, and the dad said, Charlie, I can't afford it, but they're going to take back his communication device and all the progress he's made, all the growth he's made will be taken away from him. Because I can't buy it. And so I'll never forget, this was Austin, and we gave it to him at Forbes Regional Hospital. And Austin then comes over to me with his communication device that he knows how to use because he has it in school, and he says 3 times, thank you, thank you, thank you. And I just thought, how great, he has the chance. He'll be done with high school But who knows, because he can communicate, what job does that lead him into, what possibilities does that open for his life because he can communicate. And I think we have to take a look in our own souls in America and ask ourselves, are we going to prioritize all children? And, you know, there is of course federal law, but I think We shouldn't have to have law to drive us on this. I mean, you know, we should want to give every child the same opportunity we want for our own children. That's what I ask myself. If this was my granddaughter, what would I want people to do? And whatever I would think I would want done for us, if that was the case, then that's what I should do for others. It's not very complicated in the end. No. It's about compassion.

It isn't. And you know, if you're listening right now, I was thinking about this when Charlie was talking. You realize that you could donate to Variety, the children's charity. Do you realize you could— how do you like this idea— giving a child his or her voice under the Christmas tree? How about that?

How about that?

You're getting your own voice for Christmas. I'm getting my voice.

I'll never forget, you'll love this. So in central Pennsylvania, there was a boy, he's 18, his dad's retired veteran, his mom has cancer, and they're having a rough go of it. And he's living in this community, but he can't make friends, he has no vehicle. So we gave him a bike, and he starts riding with his— the kids in the neighborhood. Then because we also gave him a communication device, the bike enabled him to be included and the voice made— the communication device gave him a voice so he could interact with them. I thought, I don't know that it gets much better than that. And his mom, who's fighting with cancer, she's sobbing on the phone with me, Charlie, he's included, he has friends.

We've been living here for 6 years, they're his friends now.

Yeah, it was beautiful. Awesome. That is beautiful. You got to give out that website again there, Charlie.

VarietyPittsburgh.org. VarietyPittsburgh.org. And I think, you know, anybody who's listening who's in the Pitts— Pennsylvania and Pittsburgh community, we should lean in and make Pennsylvania a model for the nation. And then, like I talked with Tony about recently, how do we drive this across the country? How do we make sure every child— and then, you know, then we'll send out Ambassador Bender when she's talking with Nigeria or wherever else it is. You know, it— this should go around the world because we did have a TV story one time about Tyler, who I was mentioning to you, that CBS National News posted, and we got 3 million hits, and we heard from around the world, which was incredibly sensitizing to me. People from India, people from Scotland, people from Thailand, how do I get that device for my child or my grandchild? I think we have to think about how do we do it at home and then how can it go from beyond there because this is not really complicated. We utilize the speech-language pathologist. They figure out what communication app the child needs and then they work with the child whether they're through school or whether they're through like Children's Hospital. We can do this. And I think that's what pains my heart probably the most. This is within our reach. And quite frankly, every child deserves to have us try. And we don't have any guarantee of the results, but we can guarantee our effort.

Oh, well, I'm all in, I'll tell you that. And I'm proud, by the way, to be on the board of Variety. It is such an honor. I know we've come here to the end of the show. But I hope you heard what I said. A bike, a voice, a stroller, whatever it is under the tree this year, what a great gift. You can make a difference in a child's life. It doesn't get better than that. And, uh, this is for you, Charlie. We have a quote at the end of every show, and I've always liked this so much. There are 3 ways to ultimate success. The first is to be kind. The second way is to be kind. And the third way is to be kind, said Mr. Rogers. Charlie, thank you so much for being with us.

And thank you for who you are.

Well, thank all of you who listen to the show. If you heard it and you want someone else to hear it, Go to Spotify, subscribe to the show Disability Matters with Joyce Bender on Voice America, or go to voiceamerica.com, put in the show Disability Matters, and you can hear it on demand. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Thanksgiving to all. Let it be happy. And in the words of Mary Brooker, choose joy.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.