CEO of NBDF Shares Mission of Organization and Lifelong Career Leading Various Impactful Nonprofit Organizations

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.

Hello everyone, welcome to my show Disability Matters with Joyce Bender. Joyce Bender. And as you probably figured it out, yes, I'm Joyce Bender. Um, and you know, I want you to notice the purple shirt. You can't tell, but it is purple wall. Guess what Thursday is? Purple Day all around the world. Purple Day. And our guest is very familiar with it, as he'll tell you in a minute. But Purple Day is the day that we have epilepsy awareness around the world and everyone wears purple. So get out your purple stuff, everyone. I've told anyone that dresses in purple, send me the picture because we want to put it out on our social media. But that's why Purple Day— I'm like, I'm celebrating the whole week. That's why, as you can see, the view behind me is also purple. So I am celebrating the entire week, and I hope you do too. So first of all, thank you, all of our great listeners in the United States. Wow. I mean, you are all fantastic. And if you're listening right now, hey, I just want to tell you, I mean it when I say that, how much I appreciate that you are doing this. And I'm going to tell you why. You're helping me help people with disabilities. So if you're like a disability rights advocate or an advocate or a parent or a person with a disability, a business person, you are helping me help others just by supporting this show. And also around the world. So I happen to have it right here in front of me, which is every show I read a few new countries listening to the show. And today that will be Kenya, Trinidad, and Croatia. Thank you, listeners in those countries. Wow. Can I say? All I can say is spread the news. You know, I tell people, you may be one person in Croatia, but one person can change the world. One, one person. You just have to take the initiative of reaching out to other people in your country and telling them, you know, about this radio show. It is so awesome. And then I have to repeat again, oh my goodness, I can't believe it. For the past several I'd say the past month. The country that is number 2 with the most listeners after the United States is Singapore. I just sent out a note to people from Singapore on our social media thanking them. But I don't know what's going on in Singapore, but I truly, and I mean it, appreciate and value you and your support and anything I can do to help, for example, people living with epilepsy. As you all know, I live with epilepsy. That's why I started this company, Bender Consulting Services, to help people with disabilities gain employment. That was 31 years ago, and now I've found employment for thousands of people with disabilities, but epilepsy is what started it all. So I always tell people in other countries, if I can ever help you in any way, just go to our website, benderconsult.com. And don't forget, you can share this show with anyone, although it's live now, It's also on demand and it's also on Spotify, Apple, Amazon, almost every social media platform. So, you know, act of kindness, share it with someone, make a difference. And I have to thank— hey, Yoshiko Dart. Yes. I don't know how many years now. I have to ask you because it's maybe been 7 years maybe, I have been having this shout out on every single show to Yoshiko Dart, uh, and that is because, well, I love Yoshiko, but she is also the wife of the great Justin Dart, who passed away over 10 years ago, and You know, I want to remind everyone about our history. And also, hi, Mark. What a great company. Hi, Mark. Thank you for sponsoring this show. So I am very excited about this show today for several reasons, but I'm going to tell you the first. The first is because it's Phil Guttentag. I love Phil Guttentag. He is really a, I shall say this way, a good man. And I am so happy to have him on. Okay, Phil, go ahead, you can sing now.

Thank you, Joyce Bender. Thanks for having me.

It's so great to be here. His family is the Von Trapp family. Well, Phil is the president and CEO of National Bleeding Disorders Foundation. And I'll bet this is true with many of my listeners. I have to admit, Phil, And like, I'm so ashamed to admit this, but I really, you know, when you think of epilepsy, autism, mental health disability, blindness, mobility, I mean, you could go on and on and on, but you don't often hear a bleeding disorder in the mix of all that. And I never really thought about that until you were on. And, you know, I just— I, I was— I thought, well, here's a disability that doesn't get enough attention. Here it is, because people don't understand. And you tell them that someone, you know, has a problem where they bleed if they're cut or something, and they're like, oh, okay, just get a Band-Aid, they'll be fine. I mean, they don't really understand. Nor do they understand how many different types of bleeding disorders that there are. Um, but I want to start with you. As you can see, we have listeners in Taiwan, Canada, Japan, Russia, Malaysia. And although everyone in the United States knows who you are, these people around the world don't know who you are. So, would you mind just sharing a little bit about your journey, and then why did you want to, you know, why did you want to get involved with helping people? You know, why did you want to do that?

Thank you, Joyce. And before I answer that, I want to say I'm not surprised that your viewers and listeners are coming from Singapore, from other parts of Asia, and all around the world, because you have been advocating for 30-plus years all around the world. You've traveled wherever people will listen, wherever, wherever people will have you. You've been advocating. You've been on the front lines. Before it was popular to have podcasts, you were doing your show. Before it was popular to advocate for individuals with disabilities, you were advocating for people with disabilities. And I remember when you traveled to Asia and you went to Japan and you went to other countries, South Korea, South Korea, Indonesia, the way you moved people in your, in your travel, it, it changed lives, it saves lives. And for everybody out there who is advocating, who's taking the time to speak up and speak out, you make a difference. And Joyce, you've been doing that for so long, I'm not surprised that your viewership is all around the world, obviously in the United United States, you have such a high viewership and listenership. But, you know, for me, I've tried to emulate you. I know you've been emulating Tony Coelho and other heroes of yours. Um, you know, I've been emulating you because I've seen the impact you've made. And so it drives me to do as much as I can to serve our disability community broadly. And Jill and I, my wife Jill and I have been married 40 years. and we have had a personal experience with disabilities. Both our daughter and our son, Philip has epilepsy, our daughter has mild cerebral palsy, and she has a learning disorder, learning disability, but she is a champion and Philip is a champion. And that drove me into service in the community. So we started volunteering in the epilepsy community And before long, I was just mesmerized by the community's input and the way that they— how active people can get. So I got deeper and deeper into the advocacy side and ended up serving at the Epilepsy Foundation in Chicago as their CEO. And then after many years, was asked to serve as CEO of the National Epilepsy Foundation and did that for 8 years. And what a privilege it was to serve under your leadership. You were the chair of our board of directors, our national board of directors. Tony Coelho was the chair of our national board of directors, and Bob Smith and all these other leaders who are out there helping, all volunteering. It just inspired me. And as the years went by and I wanted to take another chapter in my life and spend a little bit more time with my grandchildren, I stepped away in December of 2019, the end of the year, and started consulting just before COVID started. And And so that was really an unbelievable time in our country. And after 3 years of doing consulting work, I got a call from a recruiter who said, "I know that you've worked at the Epilepsy Foundation. There's another organization that is set up very similarly to the Epilepsy Foundation, and would you consider talking to their board?" I said, "Sure, I'd be happy to talk to their board." And that's when I learned about bleeding disorders, Joyce Bender, and the whole world that I didn't know much about, but I did understand the nature of chronic disability, the nature of the unpredictability of when a seizure might happen, the unpredictability of when somebody might have a bleed. And so I really got engaged in that discussion. The board was wonderful. The staff is wonderful. So I accepted the offer when they offered me the job to serve. And now I've been visiting chapters all around the country, learning more from families, and I'm just in love with this community. You would just adore the, the courage and the inspiration that individuals, uh, you know, demonstrate on a daily basis with bleeding disorders. Children, you know, uh, boys are diagnosed very early, almost at birth, and they live with this their whole lives. It's a genetic condition, so Their grandfather may have had it, their dad may have had it, their uncle may have had it, their sons may have it. So it's, it's something that passes generation to generation. And women bleed too. Women have bleeding disorders too. It's not been widely understood. So this is a community that has been underrepresented, underserved. Hemophilia is a rare condition, so oftentimes it gets kind of pushed under the rug, but it's so important, and there's such a history behind it, Joyce Bender, that is remarkable. And I look forward to talking a little bit more about it with you, because when you think about bleeding disorders, you think about epilepsy, you think about other chronic disabilities, there's so many similarities that we share. Every, every situation is different. Every individual is unique. And their experience is unique, but there are some common linkages that we share. Getting access to the right doctors, getting access to a therapy that can actually help control bleeds or control seizures. It's the same struggle. The insurance companies, the system that you, you know, you find all the trial and error the same way. So there's so many commonalities, and one commonality is everybody to a person is showing courage, they're showing grit, they're working twice as hard as everybody else, you know, to get where they need to go. And I'm inspired by it. So I look forward to chatting a little bit more with you about, about this new world that, that I've come into called bleeding disorders.

Yeah, I do. I want to make a few comments about that, but I want to— you grew up in Chicago, right?

Yes.

And where are you now?

I live in Raleigh, North Carolina now. Uh, we— I lived in Washington, D.C. for 8 years, and then, uh, many my children and some of my grandchildren moved to Raleigh. So we had a decision to make. Did we want to go back to Chicago, or did we want to go to North Carolina? And we, we selected North Carolina and the Raleigh community. It's a wonderful community. We miss Chicago terribly. I miss Italian beef sandwiches. I miss Portillo's and deep dish pizza, but we're in Raleigh, North Carolina now.

Yeah, a little different weather there, huh?

Yeah, that was a factor, Joyce.

Well, I just want to say, when you were talking about the similarities, I'm thinking, okay, many people with epilepsy go to a doctor, misdiagnosed, Same thing can happen here. Um, getting the right medication or therapy, same thing here.

Yep.

But you know when you were talking about like a sudden thing can happen?

Yes.

Well, that's the same thing.

A seizure, same thing.

Yeah, you know what I mean? A sudden, unpredicted, planned thing can happen.

You have pain in your knee, you have a bleeding disorder, It's not like you or I have a pain in our knee. We think, oh, we got to rub that out. You know, we'll get that through. If you have a pain in your knee, it's a grave concern because you can have bleeding in your joints. When you— when your joints bleed, if you don't get treatment within a reasonable amount of time, you can have permanent damage in the mobility of that joint. So there are these sudden things that happen that require someone addressing this. And if you can't get access to the therapies that you need in a timeframe that actually matters to you, you could have real consequences. So yeah, there's a lot of similarities there. And the people, you know, one thing that you mentioned, diagnosis, women with bleeding disorders go many, many years undiagnosed. And that is because when they have their menstrual cycle, they, they, uh, there are some women who have menstrual cycles that last 3 weeks, more than a month, and then it will finally stop. They, and, and doctors will say, well, that just runs in your family, that's just something that happens into you, not to— don't worry about it. Yeah, don't worry about it. And they don't realize until many years later that they have a bleeding disorder and that it's treatable and they didn't have to suffer through all of the, you know, the weeks, you know, sitting in high school, having to leave and go care for yourself in the nurse's office over and over and over again, or having nosebleeds that last hours, you know, going to the dentist and you can't stop bleeding when they just clean your teeth. These kinds of things are things that people deal with all the time with bleeding disorders. And women particularly have been dismissed, quite frankly. And so we are bringing advocacy not only to hemophilia and other bleeding disorders, but also to the needs that women, girls, and people with the potential to menstruate face on a daily basis.

Well, I would know since my disability was misdiagnosed, and I can just envision what would happen with this. And as I said before, when you talk about few disabilities, very few people I think are really familiar with— they think of one thing, hemophilia. Yeah, they, they don't think— but, but they don't know, like what you just said about the knee. They don't know all of these things. That's right. They have no idea. But I wanted to ask you, there's hemophilia A and B. What is the difference?

That's a really important question. If you think of a bleeding disorder, when we have a cut or we have an injury, our body sends these different pieces of a puzzle and they get all the pieces put together in a certain way. That allows our blood to clot and to stop bleeding. In Hemophilia A, you're missing a certain piece of that puzzle, maybe a corner piece. In Hemophilia B, Factor VIII would be Hemophilia A. You're missing a certain factor, a clotting factor, so a piece of that puzzle. And if you have Hemophilia B, you are missing a different factor, a different piece of the puzzle. And so you need to take medicine that provides that piece, and then you can satisfactorily clot your, your injury. And so people need this. They're just missing that protein, they're missing that factor, and that's how it, uh, how it manifests. And that you can diagnose this, uh, rather easily. It's just getting the right— to the right center, just like trying to get to an epilepsy center, you know, that can— that has all the right care caregivers, the right professionals to help diagnose things properly, there are epilepsy centers for the bleeding disorders community. They call them HTC or Hemophilia Treatment Centers. And these, these places have experts and multiple integrated coordinated care at the center. So they have physical therapy at the center, they have occupational therapy, they have medical doctors, they have nurses, they have dentists, they have all sorts of people at the hemophilia treatment center that can help diagnose properly and treat properly a bleeding disorder. So A and B is just two different pieces of the puzzle that need to be supported by medication.

So is one more serious than the other, or are they the same?

That's a good question. They're the same. However, one is more common than the other. A, hemophilia A, or factor VIII deficiency, is more common than hemophilia B.

More common than B.

Yes. So it's— but they're equally serious. And unfortunately, if you think about this, Joyce, there are other pieces to the puzzle that aren't A or B, and they don't have medicines yet for those other pieces of the puzzle. So people are still needing new therapies to come forward. There needs to be more innovation so that people with other rare bleeding disorders can get the help they need. And thankfully, there are more companies investing in these new therapies for some of these rare bleeding disorders. So there's a lot of hope on the horizon, uh, and I can talk to you a little bit about some additional therapies that are coming forward that are very hopeful, including gene therapy, uh, where You can take an infu— have an infusion of this gene therapy and it stops your bleeding. The idea would be that it would find its spot in the wall of your liver and start producing the factor you've been missing so you don't have to take medicine every time that you have a bleed or prophylactically to help prevent a bleed. This can potentially stop your bleeding disorder for yourself for the rest of your life. That's the potential for gene therapy. It's quite an expensive therapy, and it is also, you know, it's still being— it's approved by the FDA in certain cases. That's remarkably great. But it is also— there are, you know, risks just like with any therapy. There are challenges that come with it. So it's a decision, a personal decision that a an individual can make together with their healthcare provider.

Yeah, those centers you talked about, are they across the United States or how many are there?

Yes, there are approximately 150 hemophilia treatment centers around the country. There's one in Pittsburgh right where you are. There are centers around the country in every major market just about, and they really form like kind of the bedrock of the care, the, the standard of care. There's a group called the Hemophilia Alliance, which is one of our mission partners, and Jeff Blake over there is their CEO, and Becky Burns is their board president. And they are an alliance of these different hemophilia treatment centers, and they try to help all of them, you know, deliver the services that they need. And they're a great partner of ours. We work very closely with the Hemophilia Alliance and all of our HTCs through our chapter network as well. Oh, um, so you can kind of see the similarity.

I'm so glad you're on because I'm so glad people are hearing this so that they know where, you know, they can go and get help.

You bet. Bleeding.org is our website. You know, anybody can go to bleeding.org and connect with us, and we— you can find your local chapter. You know, Joyce, as I'm, as I'm describing our network to you, I know it's got to resonate because it's very similar to how the Epilepsy Foundation is set up with chapters around the country. They're independent organizations, and they all work together to try to help each other and help our community. So we're in the same kind of structure where—

Affiliates, Phil, that's the name. Affiliates.

You bet.

Affiliates. We have affiliated chapters, and they are affiliates, and we're so happy that they're there serving the community. They're so valuable. You know, Joyce, I found care for my son. Jill and I found care for our son through our community. It was not, you know, through the national organization. It was through our chapter. It was through our affiliate. And I'm a big believer in that. I'm a big believer in working together, but keeping our organization community-based because there's nothing like connecting, having a cup of coffee with someone who can help listen to you, listen to the struggles you may be facing, even if your struggle is different than theirs. It just means something to have that support nearby. And now there are digital communities as well that people can, you know, jump in on and get together. So it's just a really wonderful opportunity for everybody to work together. So we're very grateful for our chapters. I feel like our chapters are the anchor for all of the work that we do. Everything we do needs to benefit our community chapters, otherwise we won't do it.

Yeah, it's reaching out your hand to another person, and the communities are awesome doing that. So, Phil, you were talking about women and the misdiagnosis. I'm assuming with that Lon Willebrand disorder, that this happens frequently, but would you mind telling our listeners, and women, I really want you to hear this, what it is?

You bet. Von Willebrand, they call it Von Willebrand disease or VWD, and really it's another protein, it's another piece that is missing that is used very specifically in the clotting cascade. And unfortunately, This affects— this is not a rare condition. This affects about 1% of the population. Wow. Which is similar to epilepsy, you know, about 1 in 100 people. But yet women are not getting diagnosed with this condition nearly as frequently as they should be. So they go years and years and years. There are women who are diagnosed at 52. They've had it their whole life. They're diagnosed at 52. They're diagnosed at 34. They're diagnosed at 25. There are women who go in to receive hysterectomies because they can't stop the bleeding, and the only way they feel they can stop the bleeding is through a hysterectomy. Oh my. And so, uh, there have been great heroes in the bleeding disorders community who have stepped forward to, um, to raise the awareness and bring education to women's clinics around the country to say, yes, it may be something that requires a hysterectomy, but it may be a bleeding disorder that can be treatable. And when women find out that there is an opportunity to get a treatment that can better control their, their bleeding, they're so relieved, they're so happy. And this is what we— this is some of the work we're doing now that is just coming forward in a stronger way because, as you would guess, women who are advocating and putting themselves out there to say enough is enough, we can— we will no longer be dismissed by the medical community, by the insurance community, by anybody. We're going to tell our story and we're going to get the care we deserve. And there are some unbelievable heroes both on the advocacy side, individuals who have fought for years for this, and then And there are also heroes on the medical side, Joyce Bender, the doctors, the nurses, the people who are advocating for them within the health system to say, "This person deserves a better assessment. This person deserves a diagnosis and a therapy that can help them." And I can't tell you how many years you and I spent advocating for people with epilepsy who were getting told, who were told, "Oh, It's all in your head. It's just something that, you know, that you, you know, it's not, it's not a seizure. You'll get over it. Yeah, you'll get over it. Or, that's not a seizure. A seizure is when you fall down and you have the stiffening of your muscles and then the movement. A convulsion. Convulsion. Your seizures aren't that. So maybe you don't have epilepsy. Maybe it's something else. Not realizing it might be a complex partial seizure or a simple partial seizure disorder. And they go years without getting accurately diagnosed.

Oh, I know that.

You know that very well. That was your part of your story. That's true. And the same thing holds in bleeding disorders where women are coming forward and trying to get help and they keep getting rejected and disrespected, quite frankly. And so the time for that has, has changed. I'm so grateful because our HTC's are seeing more women than ever before. That's remarkable that HTC stepped forward and said, we're going to start doing this.

Wonderful. Wonderful. Wonderful. Well, when you were talking, I actually was thinking of a friend of mine that's had this ongoing bleeding problem and it's— can't— they can't figure out what's wrong. For all I know, that's what the problem is. It may be because of, you know, because there are going to be doctors that just as they don't understand epilepsy, you know, don't understand this specific disability. And then of course there's the stigma that's attached to all of this. Remarkable. Just like epilepsy. You bet. You have stigma you have to deal with.

You bet. Every day. It would be worth getting assessed and ruling something out because it may not be a bleeding disorder, but it may be. It would be something that's easily ruled out. If you get the right testing. So it's worth pursuing for sure.

Yeah. Yes. You know, I'm trying to picture as a parent, what the heck, you know, how do they feel at peace when their child goes to school, plays outside, or plays football or some sport? I'm assuming some of these boys and girls still play sports. Am I right?

Yes, if they're, if they're treated, um, they call it prophylactic treatment. They call it prophy for short, which means it's kind of a preventative treatment. So they'll infuse, and by the way, these infusions are not a pill, Joyce. It's not a pill and you're going to drink a glass of water, you go on. The way that for years children, young children, um, are the way they receive their medication is through an IV. They have an IV administration. So they have to find a vein or they have a— and every time they have to stick this needle in their, you know, in their vein to get the medicine in. And lately they've come up with better— not better, but different kinds of administration of therapies where it can be intramuscular. So you can— very similar to like a diabetes, like an insulin injection. It could just be in your belly or your leg. And so it's better, but it's still, it's a needle therapy. And, you know, it's, some people don't like that. And to think you have to do that multiple times a day or multiple times a week is just terrible. And at Camp, kids are learning how to infuse themselves. So you have a 7 or 8-year-old give themselves an IV for the first time, and everybody cheers because that's a point of moving forward with your life, to say, I, I'm not going to let this stop me, I'm going to keep moving forward. But they learn how to do that themselves. But parents and caregivers worry all the time, Joyce, to think, if my child goes and they, they fall down and they get a bruise, that bruise is a bleed, an internal bleed. So you have a bruise, you think, oh, that'll heal over a couple days. But for somebody with hemophilia, that bruise can be— you can have a black and blue mark all the way up and down your entire side of your body. Because of the internal bleeding that's not stopping. So it's a very serious condition, and it's also wonderful that there are some therapies that are out there that can help. But getting access to those therapies— Joyce, one thing to note, it's very expensive. Oh no, eating disorders therapies are expensive. And so they're the first condition that keeps getting, you know, rejected automatically by the insurance companies because unfortunately It's very expensive to cover, but people with bleeding disorders, they don't have generic therapies that they can use. These are just therapies that are out there, and thank goodness they exist. But it's very important that we advocate for people to get access and equitable access to care. You know, some communities, communities of color, are not getting the kind of access to treatment that others are getting. And, you know, it's just economic diversity out there where people are not— if you don't have the right insurance, You don't get the coverage you need. You can't have the access. So you go through your life just hoping to God you don't have an injury. Yeah. So this is the work that kind of compelled me to get involved. And I'm so grateful for the time that I had at the Epilepsy Foundation because it taught me— you taught me how to raise my voice. You taught me how to be proud of a condition instead of ashamed. You are not ashamed, and I'm not ashamed. And my message for other people is to say, don't be ashamed, be proud of who you are. And I'm so inspired by the people who I'm serving. Many of our chapter leaders, just like at the Epilepsy Foundation, Joyce Bender, many of our leaders are people who have been impacted by bleeding disorders, or they have a loved one a family member that's been impacted by bleeding disorder. So it's a passionate group of advocates, very similar to the advocacy, the passionate leadership that was shown at the Epilepsy Foundation.

I so agree with you. And I'll tell you what, Phil, it's the not being able to get access to that medication is terrible. And we're going to talk more about that. But right now, we're going to get ready to go to break so we can come back with our news. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Don't go away, we'll be right back with Phil.

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Hey everyone, welcome back to Disability Matters with Joyce Bender. And we have been talking to Phil Gatone, who is the president and CEO at the National Bleeding Disorders Foundation. But right now, it's our news break with, yes, Mathis on the mic. Our superstar Jennifer Mathis. And Jennifer, I just want to tell you, you have no idea how many comments, compliments I get about you on the show, mainly how much people appreciate knowing what's happening. Because in this world right now, it's very hard to know what's happening because so much is happening, which— that's why I always tell her she has the news every week. I never know any longer. What could it be?

Yes, there's always something.

I mean, like 5 minutes before she gets on, something can happen. So Jennifer, what is your news today?

So, um, there is something new happening this week, as there seems to be every week. And so, um, this week on Thursday, um, there is a markup, uh, that is taking place in the House Judiciary Committee. A markup is when they consider a bill that has been introduced and they have the committee look at it and vote on it. And so the House Judiciary Committee is considering the latest, what we call, ADA notification bill. This is something that has been introduced in Congress Many times before, the disability community has fought these bills tooth and nail because they would really gut Title III of the ADA, which is the public accommodations title that applies to all private businesses like stores and, um, movie theaters, hotels, um, doctors' offices, private schools, all types of public accommodations covered under the ADA. Now, what these ADA notification bills do, or sometimes they're called notice and cure bills, is they say that nobody has the right anymore to sue to enforce their rights under the ADA to get rid of architectural barriers that are in stores or movie theaters or hotels or doctors' offices or private schools, all those kinds of public accommodations I just mentioned. So you lose the right to enforce the accessibility requirements of the ADA with respect to those structural barriers unless you first give the business a notice. You have to figure out If you're a person with a disability who encountered a barrier, um, who is the owner and operator of the business, which is not so easy to do, and you have to figure out their address and send them, um, a very detailed and specific notice of what the barrier is and that it violates the ADA and why. And then you have to give them 30 days to fix the barrier. And if the owner-operator thinks that they can't fix it within 30 days due to factors outside their control, they can simply tell you that they think there's factors outside their control and they can make substantial progress, whatever that means. And you have to do all of that before you could enforce your right to sue. Enforce your rights under the ADA and bring a lawsuit. Now, this is problematic for many, many reasons. First of all, it is 36 years after the ADA was passed. So by this point, businesses, other public accommodations ought to know their obligations, and it should be on businesses to understand their obligations and not on a person with a disability to tell them what their obligations are. And if it's too burdensome for a business to understand what it is supposed to do for people with disabilities under the law that has been around for that long, then it is not fair to expect that a person with a disability should do that. And so that is one of the concerns. And then frankly, I think the biggest concern about these bills is not even the notice itself and the burden of figuring out, you know, who the owner and operator of the business is and giving them time to cure. The biggest problem with these bills is that because of how this part of the ADA is written, where all the remedies are forward-looking. So there's no money damages under this part of the ADA. If a business violates the accessibility requirements, then what happens is a court would tell them, "Fix it," right? But there's no money for past harms. So Given that all the remedies are forward-looking, there is no incentive, there's no reason for a business to do anything, to comply, to be proactive about it, because they can sit on their hands until somebody comes around who's savvy enough to figure out how to trigger this notice under the ADA, these notification requirements if they were to get enacted. And they would be able to do nothing unless and until they got a notice, and then they could fix it and everything would go away. And so that takes away any incentive, any reason to comply with the law proactively. And so what that means is if something like this passed, the world would look a lot less accessible to people with disabilities. So This is why this has been such an important issue for the disability community. It's important to me too. I work at a mental health organization, but we all care about the ADA. We all safeguard the ADA. We all defend the ADA against attacks that impact people with disabilities generally. And so it is important. We have always fought these bills, and it's important for people to let people in Congress know that this is a bad thing. Um, so this markup is happening on Thursday. We were not expecting this because this bill was not moving. It was not getting any, um, traction. It was not getting co-sponsors, but it is moving, uh, on Thursday. And so people should call their member of Congress in the House of Representatives and say, "We oppose this bill, and it shouldn't be on people with disabilities, 36 years after the ADA was passed, to educate a business, to be the one who has the burden to tell the business that it's violating its obligations under the ADA, that they should leave the ADA alone, hands off the ADA." that they will gut the core, some of the core protections of the ADA. They will gut the protections of Title III if they pass this bill. So that is what people should do as soon as possible before Thursday, ideally. If you can't do it before Thursday, do it after Thursday. You don't have to go to the Senate at this point, but go to your representative in the House.

What is the name of the bill?

Thank you. It is called the ADA 30 Days to Comply Act, and the bill number is HR 6453.

HR 6453. Yes. Okay, everyone, I'm telling you, I just want to say something. To all the business owners. You know, things are going to change in the future. People with disabilities have a great memory. They won't forget this. They won't forget it because there's going to come a day of reckoning and they're not going to forget it. Um, but for right now, everyone, you've got to take action. And Phil, I'd appreciate it if you share this with your Nashville, those affiliates, what's happening? Because what's going to happen, someone's going to walk into a building, it's not accessible, or there isn't an accommodation to use the restroom, and they're going to say, I'm going to file a complaint. And if this would pass, they're going to say, okay, go ahead.

Mm-hmm.

Yeah, go ahead. What do you mean, go ahead? Well, you have to come to me, find out all this, fill out all these files, go through people aren't going to do it. That's like why people are afraid of the Medicare and Medicaid cuts. People are not going to want to keep coming back. So in a way, this just stops it. So I want everyone, you got, you've got to count me in because it won't impact you.

Jennifer Bender, Joyce Bender, count me in, count the bleeding disorders community in because with our joint bleeds, many people with bleeding disorders use a chair. They use assistive devices. They need the benefits of the ADA that, you know, all the good things that the ADA provides. So, we will be arm in arm with you, and we will spread the word to the rare disease community as well.

That's great. Thank you, Phil. And Jennifer, you'll have to get him any information. Be like Phil, everyone. Take a stand. Don't just sit back. Because this could end up being you or your parents or your children, uh, or— well, hopefully you're going to have good news next week, Jennifer. Oh, all right, Jennifer, have a great week.

Thank you.

Thank you, Jennifer.

Thank you. You know, Phil, I, I can't imagine what Tony's thinking.

All this work, you know, all this work, and I know what he's thinking. He's thinking, stand up and fight. You know, when, when you get smacked like this, you get up and you fight. That's what he's thinking. He's thinking, let's get that army built and let's go fight. Let's get, you know, let's stand up because there is no stronger community in America than the disability community. That is the strongest community in our country. Yeah, I believe it. And they, when they rise up, they will get it done. I have every confidence. And I think that's what you're thinking. That's what Tony's thinking is. Let's fight. Let's get this. Let's show them the strength of the disability community. Let's show them. It's time every once in a while, you know, we have to show the strength of this community. And this is one of those times.

You're advocating for yourself.

You bet.

I mean, you've got to, you've got to do this. Yes, you're right. People underestimate the power of the disability community. Before we end the show today, Phil, I wanted to ask you, have you ever had a story or something happen since you've been in this role that really impacted you?

Well, there's so many, so many stories, Joyce, just as you've experienced, you know, there's a historical story about Ryan White. You may remember the name Ryan White. He was a young, a young boy who had hemophilia, and well-meaning people were giving blood to help people with hemophilia get the, the infusions they needed. Before medicines were around, they had to get new, they had to get factor from, you know, blood transfusions. And unfortunately, Ryan, along with many other people with hemophilia, received blood that had been unfortunately infected with the HIV virus. And Ryan ended up acquiring HIV and passing away from AIDS, as did 10,000 people with bleeding disorders. And so this was a major change in our community. And I learned about Ryan and his family. I got to meet his mom, Jeanie White Ginder, who's a hero in our community. She got laws passed to help others for blood safety so that, so when you give blood, you know it's going to be safe to do that, and when you receive blood, you know it's going to be safe. That's due to the bleeding disorders community's advocacy. So that story is front of mind for me, but since I started, I've met so many people. People like Patrick James Lynch, whose brother passed away from a bleeding disorder. And Patrick is doing advocacy work on behalf of his brother today in the work that he does. Rich Pizzillo, who is leading our New England chapter and has a bleeding disorder himself and is living the struggle right now. He is fighting for advocacy for himself right now because of some bleeding disorders that he's had. Our board chair, both, you know, Ryan Griffith Susan Hartman, many members of our board have personal stories that have impacted me. And there's a little girl, Scarlett, who is nonverbal. She uses an assisted device to talk and tell me jokes, and she has a bleeding disorder, and she's won my heart, and I think the heart of everybody she meets. But the common link is courage and inspiration, and motivation to help each other. You know, we are of, by, and for people with disabilities. That's who we are. We are a community that is of, by, and for our community. We do things for each other. We create things with each other to make a difference, to improve lives. So I'm inspired by Scarlett. She told the joke, why did the banana go to the doctor? You know, it's a little girl telling this joke. Why did the banana go to the doctor? Because it wasn't peeling well. That's the bad joke, you know, and she's just— and she's telling me this on her assistive device, and she's just laughing as she's telling me the joke, you know, but she's a representative of so many little ones who are showing courage every day, and they inspire me, as do the adults, to move forward and continue to serve. Alongside the work that you're doing, Joyce. Thank you so much.

Well, you know what, Phil? You've taught me a lot. But for all of our listeners, if they want to know more or get involved or donate, whatever it is, what is the website again?

It's bleeding.org, www.bleeding.org, B-L-E-E-D-I-N-G.org, bleeding.org. You find everything you need right there.

Well, you know, Phil, we are with you 100%. I tell everyone during this time we have to move forward, but we have to communicate. All silos down.

You bet.

We'll only make it if we're all working together.

We're in it.

Thank you so much. Before you go, um, we end every show with a quote, uh, and today the quote is people don't know how much you know until they know how much you care. And boy, is that right on target, said John Maxwell. Right on target for what we're talking about today. And next week, you join us. We have, yes, County Executive Sarah Inamorato. How about that? But for right now, we're going to go. Thanks again, Phil. And in the words of Mary Brooker, when you get up tomorrow, remember, choose joy. You won't be disappointed.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11:00 AM Pacific time and 2:00 PM Eastern time for another installment of Disability Matters right here on the Voice America variety Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.