Fundraising for 2022 Mardi Gras for EAWCPA

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, welcome to the show, to all of you in the United States and around the world. Which reminds me of the great event I spoke at last night for the World Institute on Disability when we were showing to our listeners Becoming Helen Keller, the documentary, and at the panel that I was on, so was Noah from Japan and Yoshiko. Arrange that. And so Yoshiko, I don't know if you heard me last night, but here we go again. Special shout out to Yoshiko. I love you so much, Yoshiko, and I know, I know for a fact you're yelling back saying, "Hi Joyce! Hi Joyce, lead on!" Well, when I talked to Noah, who is with the Independent Living Center, it reminded me of when I went to Japan with the State Department for a week and spoke throughout the country on employment. And there was great shame for families if their child had a disability. And as soon as I said that, you know, I saw Michelle and Noah, yes, that's how it is. But There is a fierce independent living center there that Noah is part of. So, you know, lead on, Noah. It was so great to meet you, and I look forward to meeting you again someday in hopefully the near future. But back to my international listeners, 17 different countries with listeners from China, to Saudi Arabia. And yes, the most listeners are in China. Now, I've— I say this on every show, but it doesn't matter if there's only one of you in a country, whether it's South Korea or Tunisia or Kazakhstan. Even if it's one, one person makes a difference. You can make a difference by getting other people with disabilities to listen to the show. So if you're in one of those countries, why don't you do that? And also, why don't you send me an email? Joyce Bender at BenderConsult.com. Joyce Bender at BenderConsult.com. Send me an email so I can figure out if you get a large enough group, we could do like a listening another time zone, of course, the way we did for Japan. But get in touch with me. I'm just so impressed with all of you, and thank you so much for listening to the show. And to our sponsor, no surprise that for the past several years, the lead sponsor of the show has been Highmark. What a great company. They are a great company. They recently donated a grant to the Bender Leadership Academy, very generous gift, but that's just how they are. It wasn't even solicited. It was to the Mary Brocker Mental Health Initiative. And David, Karen, Deb, oh, Deb Rice, I love her so much, and Cindy Hundorfeen and Larry Kleinman and, Dan Onorato, all of you have been such great supporters of me, and I really appreciate so much this company and what they do for people with disabilities. So I love our guests today. We are friends. I'm so lucky to say that Audrey Russo is my friend, and she is, but I was just telling her on the break, You're really popular here. You should, you know, I don't care who the CEO is. Oh yeah, they called me at Thanksgiving. Oh yeah, they called me Sunday afternoon. Oh yes, I was talking. It's like she knows everyone, everyone. Every time I've talked to her, oh yes, I'm meeting with so-and-so this afternoon, a CEO. I'm meeting with this new CEO later this afternoon. I mean, she is popular. But powerful. Isn't that a great combo? Popular and powerful. What a great combo. And that's her, Audrey Russo, the President and CEO of Our Own, as you know, remember, two things always remember, I'm living with epilepsy and I live in the best city in America, Pittsburgh, Pennsylvania. She is the President and CEO of the Pittsburgh Technology Council. Audrey, welcome to the show. Thank God that you— you're so busy that like I'm envisioning paparazzi running around there, all CEOs, and yet you took time to be with us.

You are so funny, and I'm thrilled to be here. And you're just an amazing cheerleader, that's all I can say. Just amazing. But I do have to agree with you, you're Partners at Highmark are insanely amazing, right? What they have done over a long period of time in partnership with you is— it's just a legend.

It is.

They have made commitments that I don't see. I don't see. And it's thrilling for them to be partnering with you and being such a great sponsor. The work that you do?

Well, you know, last year, David Holmberg, the CEO, who by the way is being honored by AAPD in March in DC for the Corporate Champion CEO, which he deserves, really deserves. But I want to say that an example of that was last year. Joyce Bender, we're going to hire 30 people with disabilities to celebrate the 30th anniversary of the ADA. The Highmark 30/30, that's what they called it. Now, I'm not meaning, by the way, in like lower-level positions. I'm meaning IT, procurement, finance, and this included at AHN because Cindy Hundorfean is also so wonderful. Guess what? Yeah, they hired them. They hired 30 people during this pandemic. And this year, they're hiring 31. I mean, this company— you know, just so you all know, I know so many companies. Guess how many people they hire?

Zero.

Although they don't know. They already have people with disabilities working at the company, people like me with non-apparent disabilities, epilepsy, MS, depression, bipolar disorder, diabetes, hard of hearing, post-traumatic stress disorder, all the mental health disabilities. I could go on and on. It's just, they aren't telling you. Like, I'll go speak somewhere, Audrey, and afterwards an executive will come up to me and say, "You know, Joyce, I have the same disability you have, but I'm not telling anyone." Now, this is like a senior vice president saying that to me. And it's a shame, but that's the way it is. But anyway, Audrey, we have listeners around the world. I want them to know about you. So how about if you start by telling us about you, you know, your background, and then how you moved into this role?

Well, I think you're setting me up to age myself a little bit, but when I first started my career, I actually started in the field of disabilities. Joyce Bender. And that is how— that is not how Joyce and I know each other. We know each other through my role at the Tech Council. But one of the things that I really learned early on was that it's one thing to be in the field of disabilities and supporting people that are across the spectrum of complexity and both hidden and overt disabilities. I always thought that it was really important for the inclusiveness to come from the business community. So knowing that I was going to pivot my career and I was very interested in systems, I was very interested in organizational development and very passionate about innovation and technology. It was a joy to be able to meet Joyce Bender about 13, 14 years ago, who actually put all those things together. And not only to be an advocate for people with disabilities, but to say the access to opportunities and jobs and innovation and tech, there should be no barrier. And so that's where our intersection, I think, has always been, Joyce, in terms of what I've known in my past life by spending time in that field and serving people with disabilities, particularly those people who had been, you know, quote unquote institutionalized, both erroneously and because our society at that point was not ready to understand what inclusion really meant. And now to be partners with you on all things that include diversity and inclusion and across the whole spectrum of opportunities. So that's a little bit about my background. You know, I've had a chance to work obviously in technology, work for big Fortune 100 and 500 companies, and as well as Carnegie Mellon University had a spin-out I worked at, and now I'm running the Pittsburgh Tech Council, which is an old— old, I mean 38 years young— and organization that was started by a bunch of people in Pittsburgh that said, as the region was going through its own transformation, the rapid exodus due to manufacturing loss, the offshoring of steel, the, you know, the change in the environmental priorities of the region this city and the southwestern Pennsylvania lost a lot of people. A lot of people fled. And there were these guys— yes, Joyce, they were all guys back then— that said they weren't going to let the region go to hell because they knew that there was innovation, intellectual property, and the capability for research and development to find its way out into the world. And that's how the Tech Council started. So we focus on helping companies with their talent, particularly difficult-to-find talent. We have a huge apprenticeship initiative that we're working on to make sure that those people who have been historically disconnected with opportunities are connected into real jobs, and they're beyond life-sustaining jobs, sort of living wages, whatever the correct language is. But we also work on issues around public policy. Joyce Bender, you know, in your work, that's, that's, you know, critical. It's critical to move the needle. It's critical to make sure that the kinds of programs that are at the federal level, such as immigration reform, you know, making sure that we have the right talent who want to be in the United States, selfishly in our region is what we really focus on, but that those laws change so that we can be a much more diverse and inclusive region. As you know, many regions have been struggling with finding the right people to do these jobs. And, you know, these jobs in tech and innovation are not just limited to people who have college degrees. There's lots of opportunities for people to be active and participatory in this new iteration of work. So, you know, we focus on all that and more, trying to make sure that businesses are connected to the world and that people who are starting companies have access to capital. And have access to the kind of investment that they need, including strategic partnerships. So I'll stop at that because I think we have a lot of fun, but it is also being at the epicenter of changing a region, which is pretty exciting. And it can be frustrating at times, but it's very exciting because we can see the movement and the momentum, and providing access is what matters to us.

Yes, and by the way, I hope that you all picked up on something, which was she started her career working with people with disabilities. Now she's being modest here, went, yeah, then I worked in business for a few. She worked for Alcoa. She worked for all these prestigious Fortune 500 corporations and Carnegie Mellon. So, you know, we are so lucky to have her right here in Pittsburgh, Pennsylvania. And the Pittsburgh Technology Council, you said it was founded 38 years ago, is that correct?

Yeah, 1983.

And it was who? Who were the people? I mean, a lot of people are not—

you mean you want the names of the people?

Who were some of the people? Yes, who were some of the original—

Some of the people that founded this in Pittsburgh were leadership out of Carnegie Mellon, and I do not know who was the president at that point in time, and I, as well as the University of Pittsburgh, but I know that PNC Bank is a founding member of the Tech Council. They saw the opportunity back then, and I think they called themselves what does it stand for? Pittsburgh National Corporation, I think, is that what the bank was called then before they were known as PNC?

Pittsburgh National, yeah. Pittsburgh National Bank. Highmark.

Highmark was very, very active in making sure that the Tech Council was thriving. So here we were 38 years ago, they were very active. We had lawyers from the law firm of, um, of Buchanan Ingersoll. It's now called Buchanan Ingersoll Rooney. They were very, very active in making sure that there was a venture fund so that people could have access to seed money. They were, they were really there at the forefront. Some of the people who have passed, um, include a man named Don Jones who brought Draper Triangle to Pittsburgh. We had Jim.

Yep.

Jim Colker was a founder, and he has much— he passed recently. These were people who really taught me a lot. I was so blessed that I had an opportunity to be able to know them and to be in, you know, just to hear what their vision was. And believe it or not, I actually took the organization back to their vision because they were spot on in terms of what we needed to be focused on and what we needed to work on. So, it was really an honor. To be able to take the baton and sort of take the organization to the next level. There was Jerry McGinnis, he was the founder of a company called Respironics that was acquired by Philips. And, you know, these are legends and giants in our community and doing work that has changed the world. Yeah, so those are just some of the people.

Yeah, that is so true. So, if a CEO— Well, I know we just, a new company. If a new company would move to Pittsburgh and the CEO would call you and say, Audrey, like, you know, what can you do for me? What can the Technology Council do for me? What would you tell him or her?

Well, it depends on the company. It depends on what they're working on. So we work with, you know, multinational companies and many of them have issues around talent. What are their talent strategies? Sometimes these companies, really don't understand how to articulate who they are and what they stand for to the local community. That's not captured through corporate marketing. Corporate marketing definitely has a place and is really important for all companies, but in today's world, people want to know. They want— they can— they have access to lots of information, so that they really want to know about the leaders. What do the leaders stand for? What are their passions? How do their values penetrate and permeate through their respective organizations or companies? So we spend a lot of time telling stories and sort of shedding the light in a way that the companies might not be able to talk about them themselves. And that's important today. You know, we have seen some people call it the great resignation. I call it the great reset. But this great resignation period, People are saying, you know what, if this company and this organization doesn't really match my values, I'm not going to stay. And you can't get that kind of information about companies from just reading their, you know, their quote-unquote traditional brochures or any kind of material. People want to know more. And that's one of the things we do at the Tech Council. We do a lot of podcasts. We do radio shows just like you do. Make sure that we're writing and highlighting people so that there can be that kind of authentic exchange, both with potential customers, people who they might want to hire, as well as investors.

Yeah, you know, as Charlie Powell— uh, Charlie Powell, I'm sorry, Charlie Lavallee was on my radio show last week from Variety, and when he talked about Mr. Rogers Mr. Rogers used to say the most important thing is for you to be authentic. And that goes with everything you're saying. Now, that's true. Employees look at the leadership and they want to know what kind of culture is this? What kind of— what do you care about? It's a changing environment across the board, including for employees. I mean, as you well know, Oh, let's talk about Alcoa. When you go back into the '80s, okay, if you would try to recruit someone from Alcoa, forget it. I mean, they would start by telling you, I'm not leaving, I don't want to leave, I love this company. You know, this was the time where people would be at companies for a long time, and then that changed, and then outsourcing came, and then everything Now we have a new change since the pandemic. We have another new, as you call it, reset. And Pittsburgh Technology Council, in case people don't know, is much larger than you probably think. Do you want to tell them how many members you have?

Well, we, we range from about 1,000 to 1,200 member companies, so it represents probably about 250,000 employees because you can't be an individual to be a member. So we represent organizations and companies. So it's— we've got a big footprint and 10% of that membership actually comes from outside the region as well because so many companies are looking to how do they get their toe in the ground in southwestern Pennsylvania and in Pittsburgh. And they become members because they want to figure out how to get access, how— is it— what's the community like to build their company or to relocate their company or to augment their offices and their presence. So it's very diverse and it's across almost every— we have advanced manufacturing, we have all the big multinationals that are— that sit in our region, which many people might be surprised by. We still have a nice presence of global corporate citizens that that what I would say, quote unquote, live in Pittsburgh. And then we represent a lot of startups, people who are just beginning to rub two nickels together to build their companies. As you know, Joyce Bender, you're an entrepreneur and you know what it's like when you're trying to find customers and trying to find the right advisors and navigating through all that. It takes a lot. And we are sort of like that extra hand that tries to provide support so that you can gain access. And then we spend a lot of time trying to get people customers. Because after all, you know, let's just really cut through it— customers matter. Customers are what makes everything really work. And it's really important to have customers both locally and non-locally because, you know, no company is going to succeed if they only focus on one city. So we've spent a lot of time in cultivating those relationships both across the United States as as well as globally and having fun at it.

So if someone would ask you what— how important is the Pittsburgh Technology Council to Pittsburgh, what would you tell them?

Well, I would say it's pretty darn important because we are serving on behalf— we're a membership organization and we are serving our members. So that's our objective. When our members are doing well, that is what creates the proliferation of presence in terms of job opportunities for people. So the success of the companies is our success, and that's how we measure our impact. And the impact has just been incredible. Southwestern Pennsylvania, for those of you who don't know, it's— if you look at the epicenter of Pittsburgh and then you just go in concentric circles, you touch upon Ohio, and you touch upon West Virginia, but we have about— in our region, we probably have like 37% of the region's payroll from last year's data are people who are either working in tech or are technologists. That's more than the number of people who were working in steel, the percentage of people that were working in steel back in the day when we were a city of 600,000 people and, you know, 3 million people that lived all around. So we have become a highly educated and, and jobs with a lot of prosperity. So that represents about 28% of the workforce. So those are the highest paid jobs. So we've just turned the paradigm upside down.

Yeah, and if you are, as she mentioned, an entrepreneur, new business, whether you're innovation or healthcare, whatever it is, I mean, you really cannot believe how powerful the Pittsburgh Technology Council is. It really is. And it's pretty significant in the United States. How many competitors do you have out there?

Audrey? Well, there's no— well, I don't look at anyone as a competitor when it comes into our work. I think because many regions have their own kind of tech councils now. So we were like, you know, the first and second tech council in the United States. Now there's about 60, and they always come to us to ask us for advice. How did we start? How are we doing? You know, what, what kind of markets do we focus on? And each little Each little and big city have their own nuances in terms of what they focus on. Some places just focus on one piece of technology. They might be just software. Some people might just focus on medical devices. We don't. We cut across what I, I would call a very diverse economy because it's really important that leaders who might be in biotech or in medical devices, get to know people who are building software companies as well. Because it's not just, because the adjacencies that exist, whether it's collaboration or it's leadership alignment, is what really makes the power. It makes it a powerful community. And people want to be in a powerful community, particularly when they're building businesses, 'cause it's lonely. You know that, Joyce, it can be very lonely. And CEOs need to get to know other CEOs. Chief technology officers need to know other chief technology officers. Chief information officers need to get to know other chief information officers because they need to be able to informally have opportunities to share and understand the matters that they're wrestling with outside their companies as well as in inside. So, we sort of work in what I would call like a relational database kind of model.

Yeah, but you're large. That's what I'm getting to. Our organization is large. Yeah, we're large.

We're definitely large. We're taking on big issues and we're gathering people. Listen, COVID put a— you know, just like I'm sure most of your listeners, COVID caused, you know, everyone to just sort of rethink, what do we do? What value do we what do we provide and how do we do that? We were an organization that was constantly what I would call pressing flesh, connecting people real time, et cetera. And pivoting into this new world and maintaining those connections and accelerating new ones has been tricky at first, but we think now we understand it. But we understand it because we have long relationships. Those companies that have not had long relationships and those organizations didn't have deep relationships. It's hard to cultivate that on Zoom. But for example, you and I have known each other. It would be hard for us to know each other at the beginning if this was our first way of exchange and we only were on the phone or we were only on Zoom. It'd be hard to cultivate that relationship.

That is right.

But since we knew each other— since we knew each other, we were able to do that.

Yes, thank goodness. So Audrey, how large are we in comparison to other organizations, technology organizations? If I'm right, aren't we like one of the largest?

Largest, yeah. Yep.

Okay, so that's what I'm getting to. We are, we are the largest.

Joyce was setting me up. I didn't even hit the I just struck out.

Well, I just want everyone to know this is not like some little thing. We are the largest. You heard her, over 1,000 members. And you know, I don't know the answer to this. How do people— I mean, how do you get your donations? Is it only from companies, or how does that work?

We have two sides. We have the Pittsburgh Technology Council, which is in the IRS tax— United States IRS tax code is a non-charitable charitable organization. So that allows us to do public policy work. I have a nonprofit that is under the umbrella of the Tech Council called 40x80, and that is the longitude and latitude of Pittsburgh, and that is where we will take any charitable contributions because the work that we do there is is more in line with charitable giving. So it's educational-focused, it's apprenticeship-focused on tech, it's focused on girls and STEM, it's focused on making sure that we're connected to communities that were not connected into opportunities. So it's where we do a lot of education work as well as our apprenticeship work. So if anyone wants to know about that, that's 40 spelled out, x80, the number 80, dot org. And you can find out more about what we do there as well.

Okay, that's good. So obviously they— anyone can make a contribution because you're a nonprofit contribution there, right?

That's a not-for-profit.

Exactly.

Yeah. And today's Giving Tuesday, right? Isn't that all around the world? Giving Tuesday?

Yeah, yeah, all around the world. And I actually was thinking, wow, I have to get Judy Heumann, who is, as you know, internationally famous with that movie Crip Camps and her book, and at one time was the Assistant Secretary of Education, always telling me, Joyce, what do we have to do to get people with disabilities at a really young age in STEM. Because how do you fight unemployment? How do you fight stigma? Education. Education can be your way in. So, oh, now is my favorite part. As you all heard, I'm a woman living with epilepsy, and epilepsy is very important to me, and I'm so honored to be the chair of the Epilepsy Association of Western and Central Pennsylvania. And King Russo, King Audrey Russo, will be the king of the Mardi Gras in 2022. I want to talk about what you did, because this year we did not have a Mardi Gras, to the great sadness of all of us. You know, we are the number one event that is so coveted to attend that we are sold out before the event. We even had people call one time mad they could not get a table. We can only fit so many, you know, in the Westin, so we would have to put them out in the hall. We didn't want to do that. But it is fun, it is great, and I just want to tell you what a great person Audrey Russo is. Very few people do I know that I could call and say, oh, this was— well, first I asked her if she wanted to do this, would she do this by Zoom? And of course, no, she didn't want to do that. You can understand why, you know, it's somewhat— unless it's done— hey, don't get me wrong, it can be spectacular, it can be done that, but if not, it's boring. And people go and there they are sitting there 2 hours, you know, watching a gala, and that is not the same. You really can't replicate the Mardi Gras. Wouldn't you agree to that?

Oh, I— you know how I feel about that. And for those of you who are in Pittsburgh that are listening, the Mardi Gras really is the party of the year. It is over the top, so much fun, powerful stories. And the spirit of the Mardi Gras is authentic. So that's always great to be in Pittsburgh and to have it in February and March right around the Mardi Gras time where many people are not going to New Orleans. It is just one of the highlights of the year in terms of the experience, the authenticity of it, as well as sharing of the impact of what the Epilepsy Association has done across southwestern Pennsylvania. And so here we have this year where— traumatic year, right? Traumatic year. There was no way we were going to be able to replicate that by doing it via Zoom. It's just impossible. I mean, unless we did spend a million dollars and we did it through VR and AR, right? And everyone had headsets, but then we'd never— we would never have everyone have access to that. So I just said we're not going to do it this year, but we'll raise money this year, but we're not going to do it. So that's why I agree that we're going to do— I'll do it for next year, and next year is right around the bend.

Yeah, she's the 2-year king. So just so you all know, Right after break, I know I have a caller that wants to talk to Audrey, but— and I will take that caller right after the news break and also talk about how this person, King Audrey Russo, worked with me passionately and raised money when there was not a Mardi Gras. I want you to understand that. I mean, calling people, we're not having the Mardi Gras, this is why, but would you still make a donation? How many people do you know that would do that? Not many, but she did. We did. And, uh, I couldn't— and it's just, I'll never forget that ever. But right now we have to get a news break, uh, as we do on the half hour Advocacy Matters with Perry Jude Radesik. Are you there, Perry?

Joyce, I am.

Hi, Perry, how are you?

Good, good.

Excited about our new segment today.

Yes, it is great today. Well, listen, let's hear it. We're ready to go. We're ready to hear it.

Okay, well, thank you, Joyce. On Advocacy Matters today, we are talking about a virtual public meeting and public comment —period regarding a really important topic: onboard wheelchairs on aircraft. And the Architectural and Transportation Barriers Compliance Board—that's a long agency name; we call it the Access Board—is working jointly with the U.S. Department of Transportation. And they're going to host a virtual public meeting to gain more input from stakeholders on a proposed Advisory Guidelines for Aircraft Onboard Wheelchairs. Now, that's not the wheelchair that you take onto an aircraft, but it's the wheelchair that's already onboard the aircraft. The public meeting is going to take place on December 16th, so it's right around the corner, from 9:30 AM till 3:00 PM. And what's going on is the Access Board has reopened draft advisory guidelines for aircraft onboard wheelchairs, and they're looking for supplemental comments. Now, the public comment period runs from December 16th to January 17th, but the public meeting is December 16th. So, the purpose of these guidelines is really to improve access to lavatories that are on single aisle aircraft. Aircrafts with 125 or more passengers. So it's people who use the onboard wheelchair then to get to the lavatories that they are trying to revise standards for lavatories. So it's the effort to address the accessible lavatories by DOT that was started in 2016. But DOT reports that they've received only a few comments about the onboard wheelchair design. So they're looking for more input, Joyce. And so this public meeting is December 16th to get further input. The outline of the new proposed standards and all the additional background you need can be found at disabilityrightspa.org. Just click on today's Advocacy Matters segment to find a link to that public notice that reopened that public comment period, and it announced the public meeting. So, advocacy matters. Information from this public comment period will be used to finalize the guidelines for onboard aircraft wheelchairs. So, if you're interested in all of this information, in attending the public meeting, or in submitting any public comments because you have information, that could be useful to the Access Board, please check out disabilityrightspa.org and click on today's advocacy matters segment for all of the information.

Oh, now I have a question for you, Perry. Will that include— in this, what you're talking about, what about the whole issue of people having their wheelchair damaged? Is that not involved in this at all?

No, it's— unfortunately, it's not. And in fact, they say this is not about that issue. So people should not come to talk about the damage to wheelchairs, which is such a big issue for our community. They simply want comments about the design of the wheelchairs to access lavatories on aircraft. Unfortunately, they're not going to address that issue at this public meeting.

Well, first of all, what they're talking about is very important because that's necessary. So I think this is critical that people call, make comments, you know, go to, go to disabilityrightspa.org and go to Advocacy Matters, and you can read about this. But, you know, don't talk about it and complain. You've got to do something. And I so appreciate you bringing that forward. Forward one more time before you go, Perry. What are the dates again?

Yes, the public meeting is December 16th, and the public comment period runs from December 16th to January 17th. All right, that's good.

Well, thank you so much for, uh, this information, and we'll look forward to talking to you next week.

Thanks, Joyce. Take care. Bye-bye. Wow, very important.

That's interesting. And that— I see that happen. That's terrible. You know, you don't know it's terrible until it's you. Then all of a sudden it's terrible. But right now we've got a caller on the line. Peggy, is that you? I'm here, Joyce. Are you here to talk to King Russo? I am here to talk to King Russo.

All right, go ahead. I am, I am here to thank King Russo for talking me off the ledge in 2021, for everything that she has done for us and is doing for us. Um, as you talked about before the, the new segment started, Joyce, I just cannot, um thank you enough, Audrey, for everything you're doing for the Epilepsy Association and for helping us get through 2021 and looking forward to bringing Mardi Gras back in 2022. It's March 1st, and we are really looking forward to a fantastic event and crowning you properly King of the Mardi Gras and thanking you for everything that you have done and all the work that you have done on behalf of the Epilepsy Association. We'll just never ever be able to thank you enough.

Well, it is an honor to thank you for the work that you do every day.

Oh gosh, I don't know what we would have done, Joyce, without Audrey's help and without your help. I mean, you two make a dynamic team. I'll tell you, it's really been amazing to watch. The two of you at work, and it's really been a blessing for all of us to have your leadership and have you helping us through such a difficult time. So thank you very much, both of you.

Yes. Well, the best person you could have making those calls with you is King Russo here, because like she's not milquetoast when we get on the phone with these people. She's saying to them, hey, you gotta do this, you're gonna do this, right? You're gonna do it the following year too. You're going to do this. And you know what? I think people were afraid to say no because they said yes. But I wanna— dynamite, dynamite. I think when they heard Audrey research, Joyce Bender is pregnant. Oh my God, what are they calling about? Like, fortunately for me, uh, I, as I said, I had the, uh, uh, world weight champion. It didn't take long to get them to say yes. I told you, I think they were afraid. But Audrey, her passion doing this, like, really I'm sorry to tell you, and you know this, Peggy, there aren't a lot of people that would spend their time working on raising this money when they're not being honored that year for an organization.

Right. Absolutely. Absolutely. And the good news is it was effective. We've already had some folks call asking, are we having Mardi Gras? Absolutely, we're having Mardi Gras. Can I reserve my table now? Absolutely, you can reserve your table now. So folks are very excited about Mardi Gras and having you as the honoree and as the King of the Mardi Gras, Audrey. So we're really, again, looking forward to it and looking forward to being together again and just celebrating and having a fantastic time. Time. So again, thank you.

And I want to tell you, I told them, Peggy, about how people— well, this is really early— but how people, uh, make— get their table ahead of time. And if you're listening right now, let me tell you, you better go to whoever is the person with the, uh, money at your company and tell them, hey, are we going to this We want to go to the Mardi Gras because I know there are people that listen to this show that are business executives that like me have epilepsy. So you know you've got to go. You've got to go and you've got to get your company to right now call in and reserve a table. So Peggy, how do they do that? How do they— is it through the website? Is it both? I mean, how do people call and purchase a table now?

Right now they could just call our office at 412-322-5880 and talk with Colleen Fulkerson, and she would be very happy to make your reservation for you.

And what is your website?

www.eawcp.org.

And isn't there a contact us, uh, yes, oh yes, absolutely. So you could also go there and say that, you know, you're— you want to talk to someone about, uh, the table. But one more time, telephone, one more time: 412-322-5880. And what is the website again?

www.eawcp.org.

Okay, everyone, you heard it. Gotta get going, gotta get going so you can be there also, uh, with all of us. And thank you, Peggy, for calling in. And I see we have another another caller on the line. Thanks, Peggy. Thanks so much. Okay, and we have Alan on the phone. Are you there, Alan? Oh, Alan dropped. Oh, that's too bad. Well, I'll bet since he's on the board that he was calling in to say the same thing. So, uh, anyway, I gotta tell you, this is so exciting to me. I am so excited about the Mardi Gras with you this year. So, Audrey. Yes. What message do you have for our listeners about the Mardi Gras?

No, I think it's an important event. I think that your point about these invisible disabilities are quite profound. It always amazes me how many people talk about how they have been impacted either directly through a situational episode of epilepsy or chronic. And it's the conversation that is facilitated as a result of that event, even while we're all having a good time, is just incredible because we don't talk about these kinds of disabilities. We don't. It's not a common conversation. Right. And there is— Almost everyone that we know one way or another, directly or indirectly.

Right. And there is stigma. And there is over 3 million known living with epilepsy. You notice known because a lot of people will not say they have epilepsy, but 1 in 26 people will have epilepsy in their lifetime. At some point. And you know, Audrey, I know one of the things that really just fired you up is when I told you that during the pandemic that there were children that would be having difficulty getting their medication.

Oh no, that is unacceptable. Unacceptable. We can't— I have zero tolerance for that.

That's what really got my heart. Yes, I know it did.

People weren't able to get out. People weren't able to get out. They were afraid to get out. They were afraid that they were going to be exposed. There was so much different information that was coming at them. And then unemployment and getting what they needed. It's like, no, we have to do something.

Yeah, I remember many people that live with epilepsy cannot drive. So— Right. But the thoughts of getting to a pharmacy Somehow, then now you're relying on someone else, and hopefully they are not unemployed, or they are able to do this because everything was so terrible, you know, especially with the shutdown and even after and even now for many people, because many people are still unemployed. But I am absolutely— So thrilled that we have you as the King of the Mardi Gras, Audrey.

Well, I'm just honored to hang out with all of you. That's all. That's the little— that's just a little piece of my day. It's a fun night. Love, love the energy. Love the people who show up. It's for a great cause. Simple. Yeah. Yes.

And we have other, uh, people that will be there that were past kings, like Deb Reich Johnson, like Jerry McCleary, like Morgan O'Brien, like, uh, uh, my mind is Diane Holder. So many people are going to be there that night that are really people that give back to the community. But I want to, again, to know there are children and adults that were not able to get medication. There are people that lost children to SUDEP. It's a great celebration, but you know what? It's a celebration of giving back and helping people, adults and children living with epilepsy, be able to function like others. And as you said, also even at work. Because there are people with epilepsy, not apparent disabilities, that do not want to disclose they have epilepsy. And I wanted to ask you before we close today, Audrey, why do you think there is this stigma about epilepsy?

You know, it's like unknown, right? People don't know. First of all, we don't talk about it. That's number one. Number two— and so that's partially education. Secondly, it's unknown. Very often people can have epilepsy and quote-unquote it's under control for a while, right, depending upon the meds that they're on. But there is a stigma about can you drive, can you lift heavy equipment. Is something going to happen at work where you might injure yourself? What are my responsibilities? Well, you know what? Those are not really great reasons. We have to eliminate that. Because anything can happen to any of us at any point in time, whether or not we have epilepsy. Anything can happen to us at work. Anytime we can be injured. So, I think the stigma comes from a generation of when so many— there was a mystique about understanding what these kinds of disabilities were and how they impact people. I think the more and more we talk about these things in a way like we do at the gala and in a way that the Epilepsy Association is driving those conversations, I think the more that we have that and the more people will feel comfortable about sharing it because epilepsy isn't a particular gender, a particular ethnic background, right? It affects every one of us. It doesn't matter if you're rich, if you're poor, if you live in a city, if you live rural. There is no one profile. And some people get epilepsy later in their life. You know this. Joyce Bender, it happens, there's, you know, something happens and, you know, they become epileptic. And it can be controlled, it can be not controlled. So, these are the conversations that make us human. I think we're just all so wrapped up in trying to have this toxic positivity that we just forget we're all human and we all have different issues. And whether they're mental health issues, whether it's an epilepsy, these silent, kind of unseen disabilities are ones that make us a richer set of humans.

That's right.

The more we know about these kinds of situations and disabilities that we each have, I think the more compassion we can have for each other. I agree with you.

And I just want to say again, Audrey, Joyce Bender, thank you so much. I am so excited to see you crowned at the Mardi Gras because you are a king. You are a real champion. We're, we're so appreciative. I am personally so appreciative of everything that you have done, and thank you for being with us today. Thank you.

Thank you for your leadership. Thank you for being an amazing advocate. For all people with disabilities. And just thank you for being a good egg.

Yeah, that's important right there, the good egg part. You are too. Well, listen, we end every show with a quote, and the quote today is also from someone well-known in Pittsburgh. The quote is, "Epilepsy never interfered 'With me playing football,' said NFL Hall of Famer Alan Faneca. Yes, if you don't know it, he lived with epilepsy, but I assure you that did not mean that other people said, 'Oh, we don't have to worry about him, he won't hit us too hard,' because yes, he did. And he is an awesome person. And, uh, Alan, if you're listening Joyce Bender, happy birthday. We have the same birthday, December 7th. So I loved having Audrey. I love talking to all of you. I hope to see you at the Mardi Gras in Pittsburgh this year and go to that website and get the information. It's on everything. All the details are on the website. So You know what I say now at the end of the show? I say, in honor of Mary, choose joy. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com.

Voice America would like to And 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.