Dr. Bridget Green: Associate Professor at Duquesne University Discusses Path to Rewarding Career Helping Students with Disabilities Achieve Success

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, this is Joyce Bender. Welcome to Disability Matters with Joyce Bender. It is always a pleasure to me to know I have these fantastic listeners out there listening to the show. I always tell you, without you, I wouldn't be here for 22 years. 22 years. Last year was the 1,000th episode. Without you, there wouldn't be a Disability Matters. And not only you, how about those 150 countries around the world with listeners? What about that? You know, from Russia to Australia, but I have to tell you, the biggest listening audience is in Singapore. How about that? And then there are countries that only have 1 or 2 listeners, but once again, Hey, one person can make a difference. So I'm just thrilled that I have you on. As listeners, you are awesome. And Yoshiko Dart, so are you. A special shout out to you, Yoshiko. You know how awesome I think you are. And also, hi, Mark, our lead sponsor. How great that company is. And today I am so excited because I have someone I just love on the show today, Bridget Greene, who's the Associate Professor, Department of Educational Foundations and Leadership, School of Education for Duquesne University. And Dr. Greene is the Institute for Disability Empowerment and Advocacy at Duquesne. She is the first, first executive director, and she is my protégé. I take all the credit, all credit. I take, I take all credit. But Bridget, it is truly a pleasure to have you on the show today. You are one of my favorite people. I am just so proud of you. I am. I'm so proud of you. I just love you, and I'm proud of you. And as I said, you were an intern right here. I did your consulting services 20 years ago. Oh my, isn't that amazing? But look what happened.

Look what happened under your leadership.

Attitude leadership. Yeah, but look at you. So proud of you. Thank you. So since we have listeners across the United States, but also around the world, people always want to know more about our guests. So how about if you share a little bit about your journey and how it led you to where you are now?

Oh, the question. Although that's a tough question, because I can talk about my epilepsy, or I can just talk about how I got into special ed, but Um, so where do you— where would you prefer me to go? Disability or the whole shebang? The whole shebang.

Yeah, let's start, let's start with the epilepsy.

The epilepsy, yeah.

And then what took you on this road?

Beautiful. So at age 13, um, I was diagnosed with epilepsy, actually. And Joyce, I don't know if you know this about my story, but, um, I didn't get an epilepsy diagnosis in the beginning. First they told me that my attack seizures were because I was anorexic, because I was a very thin child. And so they made me have a food diary, and then they saw the amount of food I was taking in, and then they thought— um, and I apologize, we should have had a trigger warning for that, um, for the audience— um, but then they thought it was bulimia. And, um, then they, you know, monitored my food, um, and realized that I wasn't bulimic. And then it was an allergy to fluorescent lights.

Oh my, this is like me.

I know, I know.

Oh my goodness.

And so for a while they're just like, oh yeah, she's just allergic to fluorescent lights. There's fluorescent lights in the classroom. This make— this is making sense why she's reacting this way. And I eventually switched to a different pediatric neurologist, and they didn't do this new age piece at the time. They actually went back old school, measured my head, glued it on, and I only got through like the second or third strobe light before it was extremely clear I had epilepsy. And so around age 13, I was diagnosed with juvenile myoclonic epilepsy. So a lot of my— I have all types of seizures as well as no auras, and I have a lot of myoclonic twitches. But from age 13 to 18, I was, you know, pretty controlled. And what's wild is second period on my 18th birthday, my body just decided to reject my medication and it treated my anti-seizure medication as poison. And I went from, you know, over the course of the next 2 and a half months being a 3.8 GPA student to a 1.5. There were days when I was unable to walk. The neurologist kept giving more medication which was slowly shutting down my body. So I was unable to walk. I— some days I couldn't see. Some days I had— was having seizures, so many seizures I couldn't get out of bed. I had extreme vertigo. I would be completely fine walking into school and then I'd put my head down and I wouldn't be able to lift my legs to go to the next class. I remember trying to do track, but we would be driving through the trees and the trees would act like strobes and I would have a seizure and then be unable to track or, you know, and it's just that time of we don't know what medication does. And so thankfully at the time, my uncle made a call to his med school friend who happened to be— I call him my living guardian angel and he saved my life.

James Valeriano, best doctor in America. My doctor ever.

Um, but he did a favor to my uncle because they were med school buddies and brought me in. And it just goes to show the importance of social support when you have a disability, because you just don't know who people know. Um, and my parents wheeled me in in the wheelchair, and, um, Dr. Valeriano said, stand up. And they lifted me up, and I fell right into a wall and fell down. And he said, you know what, I actually think I know what's going on in this case. And, uh, he said, her medication's poisoning her. And Um, within a 3-week period, he moved me off the medication that was poisoning me into another medication. And freshman year, I started a month and a half later, freshman year of college, and I had to learn how to write a sentence, learn, uh, you know, reading comprehension all over again, and got through college and realized how medication impacted my memory. And as I evolved throughout my collegiate career, I was really interested in where the disabled folks were at, you know, and what are we doing for, for them in college and in life. And you were able to see how inequitable everything was. And that led me to get my master's in special education. And it was my transition class. With somebody you know who works closely with Bender Leadership, Stacy Dzvonovic, who introduced a book that took me to GW and really evolved in my love of special education, focusing on helping individuals with disabilities transition to post-secondary environments, employment, independent living, and in college. And that's what I came to Duquesne to study with my students about. And it led to this incredible opportunity with the Trees Trust, the Edith Trees Foundation, foundation trust for this Institute for Education— or I'm sorry, Institute for Disability Empowerment and Advocacy, where we center education for families and caregivers for individuals with intellectual disabilities. So it's a long process, but I don't know if I'd be as successful in life without my epilepsy because it gave me such a unique purpose and insight to an experience to the struggles we face in all aspects of our lives.

Yeah. Look at you. From what were 1.5 to PhD.

Yeah.

To a doctor. How about that? I say this, if you don't have the right doctor, if you, if you think something's wrong, you may have epilepsy or you don't understand what's happening, or a parent and you feel like this about your child. Go to a neurologist, not the family doctor, and get a second opinion. Mm-hmm. Yes, because my doctor told me it was a female hormonal problem. And just like Bridget, you know, I could have died from that accident. But here we are, you're right, fighting the fight. And, you know, You know what I mean though? So many people with epilepsy are misdiagnosed.

Unbelievably misdiagnosed, you know, and we— or they're told not to talk about it, right? And, or they're not, or they're just getting medication to the point where they can't communicate and they can't self-advocate. And it's such a, you know, complex disability, but advocacy is so centralized and so needed and empowering empowering parents and individuals with epilepsy is so crucial to the success in the inclusion into the larger community.

Yeah. Well, we're going to talk more about this when we come back, but first we have to go to break. You are listening to Joyce Bender on Disability Matters with superstar Dr. Bridget Green. We'll be right back. Don't go away.

At Highmark Health, we believe what makes us unique makes us better. Our differences broaden our perspectives and foster a variety of skills to complement each other, creating a stronger and more vibrant workforce. It's this belief that earned us recognition as the Best Place to Work for the 10th year for individuals with disabilities in a survey by the American Association of People with Disabilities and Disability:IN. We'll continue to celebrate and benefit from the inclusion of all people. To find out more, visit highmarkhealth.org.

Everyone has unique abilities, and with ABLE NOW, individuals with disabilities are able to save money while maintaining certain benefits such as Medicaid. ABLE NOW is a tax-advantaged savings program specifically designed for people with disabilities. Open an account online today and start saving for the things that are important to you. To learn if you or someone you know is eligible, visit ablenow.com. ABLE NOW is administered by Virginia529. Since 1985, Bender Consulting Services has served as a national leader in advancing employment of people with disabilities, including veterans with disabilities, with private sector companies and federal government agencies. Bender assists customers with achieving their diversity and workforce inclusion initiatives by tapping into a talent pool of individuals seeking professional positions, including those in the STEM fields. In addition, Bender Services include disability employment consulting, training, and technology accessibility through their HI-TESS line of service. For more information, please visit www.benderconsult.com. Are you currently receiving SSDI or SSI and wanting to work? Did you know there is a free Social Security program called Ticket to Work to help you try work without risking your benefits? My Employment Options is an authorized SSA Employment Network specializing in work-at-home home and local job placement in 47 states. Our clients receive a personal counselor to help find the best job fit and a staff-certified benefits counselor for help with Ticket to Work protections. Ready to try working? Apply for free job placement help at myemploymentoptions.com. Streaming live, the leader in internet talk radio, voiceamerica.com.

You're listening to Disability Matters. Now please welcome back the host of Disability Matters. Here's Joyce Bender.

Hi everyone, welcome back to the show. We're talking to Dr. Bridget Greene, who is now the Executive Director for the Institute for Disability Empowerment and Advocacy at Duquesne University. And she is a superstar. I have to tell something here. She knows— oh, it wouldn't be right if I don't tell this. When you have epilepsy, you have too many neurons firing off. So I tell everyone, you know what that means? I've got the firepower. But guess what? So does she. We both have the firepower. So look out. I always tell people, don't feel sorry for us. We're coming your way. We're coming your way and we've got that firepower. And, you know, I wanted to just mention about epilepsy that Medicaid, people with Medicaid, people with disabilities have a higher prevalence for epilepsy. And I'm just wondering what you think. First thoughts that go through my mind: lack of healthcare, healthcare disparity, ignorance, you know, no access to any knowledge about this, poverty, not having access to Medicaid. What do you think, Bridget?

Why so many folks are on Medicaid?

No, no, that people on Medicaid, that epilepsy has a high prevalence of being on Medicaid.

I'm sorry, I misheard that.

That was on me.

My apologies. I think it's such a perfect storm of problems, Joyce Bender. You know, there is a fear of, you know, when we think about epilepsy and unemployment, there's such a fear of people getting hurt on the job and causing problems on the job, or employers thinking that it's not safe to have folks with epilepsy in the place of employment. I think that there's such a social stigma about epilepsy. In my Social Injustice Disability Empowerment class, I talk— with my master's students, I teach about about the social or models of disability. And we have the medical model, the religious model, the functional model, the social-political model. And what underlies a lot of these models, except for the social-political where this is idea that we all have a responsibility to help include people with disabilities, is in other models, the responsibility is on the disabled person where they are the reason why they're experiencing the difficulties that they face. And, you know, epilepsy has had such a deep-rooted stigma in our history through different religions. And Tony Coelho does a phenomenal job talking about that. And so I don't want to ever teeter into his lane on his expertise with religion and the stigma with disability. But I think as a society, you know, we, we see a seizure and we think that that person's innately bad or scary. And I think that there's a system and a social stigma of it's just better not to address it. And I even— and I don't know if you've seen the same thing, but I've even seen medical doctors say, oh, it's a seizure disorder. It qualifies as epilepsy. You can call it epilepsy. And they still won't even call it epilepsy. And that's always really been very fascinating to me as I've gone through primary care doctors You know, when you talk about, um, poverty, I, I had to switch from brand name to generic, um, because my insurance would no longer cover brand name. And even with all the appeals that Dr. Valeriano would do, um, and for me, I'm a medication-sensitive case, and, um, you know, just one month of brand name would have been over $2,000. And so it would have been more than I bring in financially. And also, um, that's not including daycare, you know, bills, mortgage, anything like that. So we, we have to pick and choose what is the safest way we can live our lives. And, and I think that it's kind of set up to force us in one pathway.

You know, isn't that sad though?

It's so sad.

That is so sad. I see that Lamictal, the cost has gone very high. And I'm always— and at the Epilepsy Association, which we're so proud, Bridget, to have you on the board, one of the things we have to work on is what are we going to do when Medicaid goes away and we start getting all these calls of people with epilepsy? I need medicine. I need medicine. What are we going to do? So that, it is scary.

Very scary. And these are lives we're dealing with, right? And, you know, services that people can get access to, to experience inclusion and something that's really important to the Institute is cultural and community engagement. We've talked so much about this, Joyce, off your radio show, but we forget how many people with disabilities want to be included in the community and how we're not providing something as simple as medication can allow that inclusion. And I know for myself, without medication, that impacts my ability to drive and that's going to impact the way I pick up my girls and it just will have a trickle-down effect. And it's not that anybody wants to take advantage, we just want to live. And that's, I know the Epilepsy Association is trying to, and doing a phenomenal job trying to find those pathways, but there's a deep fear that a lot of folks have about what happens if stuff are gone. And we're kind of always told, "Don't live in the future, live in the now." But I don't think people with disabilities ever have the luxury, especially folks with epilepsy who are constantly scanning their environment to make sure it's safe, that we have that luxury to not think of a worst-case scenario because that's how it could impact our livelihood or create a breakthrough seizure. And that can be extremely dangerous for us.

You know, I heard someone saying, well, here's what I'm going to do. I'm going to take my pill every other day. Okay. Oh, that is a sure way to have a breakthrough seizure. Yeah. I just want you all to understand when you're listening, you understand what people don't have access with epilepsy and certainly many, many other things, but I'm just using epilepsy epilepsy because we both live with epilepsy. But when you don't have access to that, that's shameful, that's immoral. Yeah, a little child not having access to their medication, I mean, so terrible. And you know, when we were talking about epilepsy, which over 3 million Americans live with it, but here's what I don't understand: 1 in 26 people will live with epilepsy in their lifetime. So why doesn't anyone know about epilepsy?

It's interesting, you know, I think it's the— still, it's the stigma that's there. I have some students with epilepsy, and what's the difference of how they react is if their medication controls their seizures or not. And some have had some really tough stories like you and me of epilepsy medication and medication not working. And they're on their 5th or 6th go of a different type of medication or medication, you know, patchwork. And there's an anger and grief there, right? Because— and people don't want to talk about the bad, you know, if it's controlled and they can manage it in a very meaningful way that they can still have a quality of life, they're more willing to accept it as our plus one, as we've always called it. And I think that it's very easy for folks to think, and I'm not saying it's correct, there's a shame that comes with epilepsy, right? And I mean, because the things that happen when you have a tonic-clonic seizure is, you know, you're talking to somebody, Joyce Bender, who had tonic-clonic seizure at prom because there were strobe lights. And so, you know, it is a little embarrassing to, you know, lose control of your body at prom. And, and there's shame that can very easily be had. And there's definitely anger. I see a lot of folks who are diagnosed in, you know, at the time I was, and I was one of them, is very angry that I didn't get to have a typical teenage life or a typical college life. And that anger, you know, I needed to work through that with therapy and And part of working through that is valuing all of the good that I get from having epilepsy. And some people aren't there yet, but they'll get there. But the more we see and shine light on the good that can come from having a disability, whether it's our community, whether it's the advocates that we get to stand on the shoulders of, folks like you, folks like Tony, Judy Heumann, Eddie Roberts, all of these phenomenal folks. That's when they get to see the joy that's part of being part of the larger disability community, because there's a lot of joy here. And sometimes people don't want to talk about their differences because it can put them at risk. It can be used against them. But there's also a beautiful joy of being part of the disability community too.

Mm-hmm. Yeah, there is. And you know what, Bridget, I'm going to have you on again in November. For Epilepsy Month, and I'm going to tell you why. Between now and then, I'm going to reach out to young people everywhere and ask you to come up with questions, you know, for Brigid, because look at her, a woman living with epilepsy, and look how successful she is and not ashamed. This is the key thing I've got to get across to you. Do not be ashamed that you're living with epilepsy. Do not. That is only hurting yourself because you don't have anything to be ashamed of. Remember, you've got the firepower. Just keep reminding that— reminding yourself about that. But you know what, Bridget? Another thing people don't realize is there are so many different types of seizures.

So many types.

Like, there are people, elderly people in skilled nursing where they thought the person had dementia because they would stare for a few minutes and they were having an absence seizure. So what do we do to get people educated? I mean, people don't even know. When I say 1 in 26, they're like, oh, that's not possible. I say, yeah, that is possible. Education, right?

Education is huge, right? And it's even educating the individual. You know, for a long time with me dropping, so it's just the misfire, the initial— it's a type of seizure is also a cue that I could have a tonic-clonic seizure coming. And we call that, you know, drop attacks where there's a misfire in my brain and all of my muscles stop contracting and I just fall straight to the ground. And I'll just end in fetal position and then my muscles will contract again. And it's painful, it's tough, and I didn't know anything about it until I was in college because it kind of evolved to be another type of seizure. But I think so much, and this is, you know, again, what I'm so excited to collaborate with you on with the Institute is We have such a responsibility to educate employers, people with disabilities about opportunities in the community and opportunities, you know, that we can develop collaboratively, as you and I always say, when we desilo and help each other. But it's got to be done through education. And we have to find the folks who— and introduce our younger generation, because the younger generation is phenomenal at talking about injustice and talking about you know, mental health needs and empowering them to say that, talk about epilepsy in the same way is crucial for us to destigmatize this disability. And really to educate the older generations too about, you know, epilepsy isn't related to the devil like it was written about 50, 60, 70 years ago. It is just a misfire of the brain. Like my neurons sometimes don't talk to each other. The same as somebody else does, and that's okay. It's quite simple.

All right. It's not voodoo.

It's not. No, it's not. And just realizing that when I talk about my epilepsy to folks, they do— it's even in special education, it's not a disability that we're talking about. So the first day of class, I tell my students my why. I'm like, listen, this is why I care about this field. This is why I'm going to get you over that finish line. This is why we're going to work together. This is why I'm going to give you feedback. It's why I'm going to make you meet your goals. Because I was that student that was overlooked. And it was— I don't want you to have those students that felt that nobody cared about them. I was that student that dropped that GPA, wasn't performing, and they thought it was senioritis when it wasn't senioritis. It was me being unable to formulate sentences.

Now, did you have friends during that time that helped you or just your family?

Majority of the support was family, my parents. My parents and my siblings are phenomenal people. I did have a few folks at the school I went to that looked out for me. They'd help me, walk me to the nurse, and I overall was very blessed to have that, but I was also the seizure girl. And there's a lot of people that I just wasn't— I wasn't the cool kid, and that's okay. I think that's the reality of a lot of folks, but folks aren't the cool kid for a number of reasons. It might be their music taste. It might be their clothing taste. Mine just happened to be epilepsy. But I had phenomenal parents. And my mom, I remember being diagnosed, my mom, She looked at me and she said, "Well, we have two choices. You can let epilepsy control you and we'll just give up, take it day by day, and we just move forward that way and we'll just live your life around epilepsy, or we can control it. And that doesn't mean we're going to get rid of epilepsy. That doesn't mean we're going to 'fix you.' That does mean, though, that we're a team and we're going to figure out and we're going to listen to the best doctors and we're going to you know, ask questions and we're going to take it, understand that we're going to lose some battles, but we're going to win, you know, we're going to win overall. And I think that mindset was so powerful for me, especially at age 13, because I opted for the team approach. And that taught me from a very young age that we talk a lot about independence. But from a young age, it taught me about the value and the power of interdependence, of understanding who can get me farther along in my advocacy. And it might be a Joyce Bender educating me on what employment outcomes look like for folks with disabilities and having me dive in, you know, instead of me just doing a cold call asking employers about, you know, opportunities for people with disabilities, I got to see head-on, you know, interning with you of how bad the outcomes were for folks with disabilities in employment. And so, you know, I truly believe that interdependence is way that we're all going to be successful in, in life, and we've got to rely on each other to not only have a touch point like, I'm being discriminated against, but also a touch point of community and joy and love and support.

Yeah, uh, well, the greatest thing that Judge Lally Green did for me was introduce me to her daughter. That's the greatest thing she did for me. And with that, it is time for our news break with Mathis on the Mic. Hello, Mathis on the Mic. Hi. Hi, Jennifer. How are you? Good. Well, what exciting— you know what? I don't know how you decide what you're going to talk about because like by the minute something is happening. But what did you choose to talk about today?

There is always a lot to choose from, as you say. But today what I thought I would highlight is a lawsuit that Minnesota just filed against the federal government for the government's decision to withhold or quote unquote defer hundreds of millions of dollars in Medicaid funding to the state of Minnesota, including funding largely for community-based disability-related services, personal care services, home and community-based services, mental health community rehabilitative services, including assertive community treatment and other services. So these are all really valued and important services to the disability community. These are services that help people exist and survive on a daily basis. And what has happened, what Minnesota is alleging happened in this lawsuit, is that the Centers for Medicare and Medicaid Services made a big announcement after the president made a big announcement that it was going to be a day of reckoning for Minnesota. And he connected the protests on the streets to what was happening in their Medicaid program, which the federal government is claiming is rife with fraud, waste, and abuse. And they are, without apparently having any specificity or produced any kind of systemic evidence claiming that their— the fraud is at such a level that they need to withhold all funding for these services, which is really unprecedented, unheard of. That you would see the federal government essentially play with the lives of so many people in this way. And so Minnesota is challenging this action as unconstitutional and as unlawful and saying they don't even have information from the federal government about what exactly the basis for the Medicaid fraud allegations are, that they have these incredibly vague statements about variances in fund— in spending that differ from historic billing in services. In other words, that there's more spending on these services now than there was before, which which I think many people think is because there are more people using these services now than there were before. But in any event, um, they have really the most threadbare explanations. And the idea that the federal government would take this kind of drastic step of withholding hundreds of millions of dollars every quarter— not even every year, but every quarter— so we're talking billions of dollars ultimately that would be withheld when Minnesota doesn't even know what it's supposed to do in response.

This—

the government demanded a corrective action plan and they produced a detailed corrective action plan, and they were told by the government this is not enough, but they don't know why. And in the meantime, the government is moving forward with this. So, um, I think it is important to follow what's going on here because Certainly what is happening in Minnesota could also happen elsewhere. And these are critically important services to people with disabilities. And the idea that the government can just on a, on a bare assertion withhold the money that Congress has appropriated for Medicaid spending on community services is frightening.

That is frightening. Terrible. A few questions I have. Who, who made that decision in Minnesota? Who said this is what we're going to do?

You mean who made the decision to file the lawsuit?

No.

Who made the decision to withhold the funding?

Yes.

Yes. CMS, the Centers for Medicare and Medicaid Services. Dr. Oz. Is the head of the Centers for Medicare and Medicaid Services.

So it would be him.

Yes.

Yeah.

And so along with Secretary Kennedy.

And so we have this lawsuit going. Where do you think that will go? What do you think?

Well, I, I mean, my guess would be, but I, I I, you know, haven't looked closely at the papers yet because it was just filed, literally. I think it was today. Um, but I would imagine, to me it seems like this kind of step is only supposed to happen after, number one, there is very clear evidence of fraud, and number two, that it is targeted and not simply withholding money across the board for anybody who is getting these services, um, but targeted. And I— my understanding from the papers in the lawsuit is that the mechanism they're using, what's called deferral, is usually for a particular claim, one claim, not to withhold money across a service system this way. Um, but in any event, so because of the drastic nature of what they are doing and the lack of process and the lack of evidence and the lack of any kind of specificity about what the fraud even is, the state doesn't even know what exactly the government is alleging at this point. Um, so I would imagine that the federal courts would put a halt to this, at least put a pause on it and say to the federal government that if you're gonna do this, you have to first go through a process that is a more regular process and you have to produce the evidence and you have to give the state a meaningful chance to correct whatever deficiencies you think are there. And so that's what I would speculate would happen but I don't know what will happen.

Okay, well, so is this only Minnesota that it's going to impact?

Well, for right now, it is Minnesota that has been subjected to this, but the federal government has, and CMS has started to talk about fraud, waste, and abuse throughout the Medicaid system. And so So I think we could expect that they might do, they might take actions against other states as well. So everybody should be concerned about this. I know that a couple of the big disability coalitions just today sent letters to the Hill, I think to the overseers, the House Oversight Committee. And so I think people can contact their members of Congress to let them know that they are concerned about these types of actions. Even if you don't live in Minnesota, I think it is helpful for people to be aware of this because I suspect it will not be confined to Minnesota.

So Bridget, uh, Jennifer has a tremendous impact on people, so we're going to have to call out the Mathis Mighty Warriors. And you have to, hey, you know how this will be you next? You have to do something. All of you in Minnesota, write letters, make calls. It will make a difference. But even here with all of our representatives, you've got to stand up and say, hey, that's wrong. Hey, we don't want to see that here. Don't sit back sit back and wait. This is what people do. They sit back and wait until something bad happens, and then they say, "Oh, why did this happen?" You have to take the preemptive strike here. So call your representatives. Minnesota, we are behind you. We're behind you, people with disabilities. So make sure you get out that call. And Jennifer, you keep us up to date.

I will do that. Thank you so much for having me on.

Okay. Thanks, Jennifer.

Thank you.

We are so lucky to have her. She's with Bazelon and she is phenomenal. You know, so you all know Jennifer is the person when it's mental health disabilities that you'll see in the New York Times or the Washington post. She is just a phenomenal person. We're really lucky to have her on here. Boy, that's not too good, is it, Bridget?

No, it's not. And you think about, you know, that and people who are about to file for services or a wheelchair, and you know, it just, it's scary.

Yeah. Yeah, it is scary. And actions have consequences. It may not be now, but it will be coming. So everyone think about that. Talking to you right now, the politicians, when you make these decisions you make. So, Bridget, I am like so on top of the world, excited about the Institute Would you mind sharing about that with our listeners, what it is and what will be happening?

I too am beyond excited about the Institute. And so the Institute, we received a $12 million grant to start the Institute for Disability Empowerment and Advocacy funded by the Edith Trees Trust. And as I told the funders, This is like a unicorn, once-in-a-lifetime opportunity. So beyond excited to collaborate with agencies across Pittsburgh to, in our major call and our major goal, which is kind of incredible how paths, when they're purposeful, we are going to keep crossing until we align and connect. Because the initial charge for us is to find employment for people with intellectual disabilities, and we know are folks in our community with intellectual disabilities. They're members of the epilepsy community, I'm sorry, and they are marginalized and overlooked and ostracized for something that they can't control. And one of the big fears I have as an educator is we often worry in our transition plan under the Individuals with Disabilities Education Act is, you know, how are we preventing this population from graduating from high school to the couch? And how are we making sure that we are creating opportunities in employment and independent living and post-secondary environments and education environments? And what are we doing to educate stakeholders also? And the stakeholders are the individuals with ID, the individual, the caregivers, siblings, employers. What are we doing to do that? And that's, that's really a goal of the institute and beyond, excited for this charge and this opportunity. And we're doing this through 4 pillars. The first pillar, for obvious reasons, is employment. And one of the goals is job training, job placing, and then also, you know, aligning with phenomenal folks like you, Joyce Bender, of educating employers. Employers, you know, we have much like all disabilities, there's a stigma of aligned with intellectual hiring people with intellectual disabilities and, you know, they think, oh well, they can't do anything and it's just simply not true. We can job create and provide an opportunity for true inclusion to occur in the workplace. There just has to be a willingness there to do that. So that's one pillar. The second pillar is policy and advocacy where we're going to help help parents, guardians, caregivers, individuals understand their rights, whether it's in employment settings, whether it's under the Americans with Disabilities Act, whether it's Medicaid, you know, and, and help them understand what they can do. And just because you are protected by legislation does not mean you cannot work. And in providing that accessible education to the larger community, the third being assistive technology. And I know we have phenomenal people in Pennsylvania like Temple University with Tech Owl doing incredible work in assistive technology, but we hope to do education and support of the community to do— utilize assistive technology to make employment more accessible. And then finally, it's community and cultural engagement. So getting folks embedded in the community with an understanding that they have a right to be included. And, you know, things like Maker's Mark in the convention center, around the holidays in December, they— to bring our folks to the forefront and say, hey, you get to have an opportunity to sell what you've created here too. Let's figure out how to make this work.

So it is that, that social engagement part is so important.

It is. And we forget, you know, we forget how crucial COVID did on folks when they weren't getting that social engagement. But what's important we have to remember is that did such damage to folks, but that lack of social community engagement is every day for some of our folks with intellectual disabilities. And that's what's so incredible about this opportunity funded by Edith Trees is that they're not only acknowledging it, they're asking Duquesne to do something about it and, and figure it out in a manner that can be applicable across the country. And I think that is in a time where we do have very big struggles occurring in the states, it's an opportunity to almost be a lighthouse of— for Duquesne and the Institute to be a lighthouse of saying, hey, we're not going to fix everything, but we're going to help you make sure that you understand that we believe you're part of our community.

The unemployment rate for people with significant intellectual disabilities is 80%.

Yeah, it's really bad.

That is shameful and shocking. Why do you think it is, Bridget, that if we use Down syndrome, let's say someone has Down syndrome, no matter who they are, no matter what their background is, that the employer says, oh, they won't be able to do anything? Just One look, they won't be able to do anything. Where did that all come from?

I— oh man, Joyce, you're bringing it back where, where, you know, we segregated students with disabilities in K through 12. You know, we had this pathway for in the '70s and '80s where career tech ed was for disabled folks, you know. So there's always a stigma associated with the trades. And I mean, the trades, you want to talk about a beautiful field with job security, that's our trades in the United States. And that's our— it's our housing, it's our infrastructure. And I just think that what happens when you don't include, you perpetuate the cycle of segregation. And as somebody like you who's fought so hard for meaningful inclusion, not just token, like, oh, here's our shiny disabled person, you did it, right? It's meaningful inclusion where it's consistent. Oh, I have these jobs. Oh, I have these 15 positions. I want them included and they're going to be part of every meeting and they can eat with everybody. They're going to be— their office is going to be central. So it's not, it's not in name only. It's intentional. I think you're feeling how hard that is every single day. And those are for the otherwise qualified populations. And so when you have somebody that carries such a stigma of an intellectual ability. That is where I think it's very easy for folks who have never engaged with the intellectually disabled population to be creative about inclusion. And there are ways that we can be phenomenal with our inclusion in production, in tech, in academia, right? It's just there has to be a willingness and a drive to do that. And I think that's one of the fun things about the funder. He's like, figure it Let's go. Partner, tackle it.

Right.

And I think there's nothing more powerful than a charge of that's like onward.

Let's go. Edith L. Treese is awesome. What they've done. I mean, just phenomenal. And there is— I know I'm not supposed to talk about it, so how can I say this? There's an angel I know called Michael Abriel. That's all I'm going to say. No more. But he is. He is an angel. Bridget, what are you hoping? What dreams do you have for this institute?

I hope— it's quite a few. I hope that we can take down the silos in the community and collaborate together. I know we're all scared with lack of resources. I know we're all scared with what could come next. I know, I know that we're all sitting in a ton of fear, but I hope that we can, you know, cross the aisle and hold hands and desilo. And it sounds very almost utopian right now. Desilo our structures to collaborate for and share goals. My mom always tells me, you put your ego in a box and the box on the shelf and you stay focused on the end goal. And I hope we can do that. And that for that is for the Institute, the goal of that is true inclusion. And it means empowering an individual to find meaningful employment, to receive dignity through employment, to receive the— to understand the power of the paycheck and how many hours they can work so that they're engaged meaningfully in housing and living and the value of using your paycheck to buy a gift. You know, a goal is for them to to all face that. And it's also another goal of the Institute is to educate non-disabled folks about the beauty that is the disability community. Because if you want to know how powerful we are, just go back to 1975, the sit-in of the disability, the longest sit-in in a federal building, and you will see that people are willing to put their lives on the line and march for equal access.

Yes, that is so true. So true. So Bridget, who is your role model? Because I think about you and I think, wow, she's been influenced by so many people. Uh, so, so who is it?

I think it's, it's, it is influenced by people. I can't think that it's, you know, one person. I will say I have phenomenal grandparents, each of them who has taught me through storytelling or, you know, their experiences. I have a grandma who was a nurse D-Day 120, grandpa who was in the Pacific, another grandpa who helped liberate Dachau, and then another grandma who— I'm very fond of this one, but anytime there was inaccuracies in the newspaper, she would edit it and send it back because there was such a strong belief that if you're going to educate, You do it correctly the right way the first time. And I think there's something powerful with that. And we also have phenomenal leaders in the disability community. Someone who I would love to meet and, you know, would have been Bradley Lomax and how he rallied the Black Panther Party to help save lives during the sit-in I just mentioned. And, you know, how they, the Black Panther Party truly looked out for one another and how he brought in, you know, an independent living center To an Overlooked Community and Judy Heumann and Eddie Roberts and, you know, all of these phenomenal— my mentor, Mike Ward, all of these phenomenal folks who have disabilities, who fought tooth and nail for somebody like me to be employed as faculty and executive director of an institute.

It's— Oh, we're so proud of you. We are so proud of you. Well, Bridget, thank you for being with us today. We'll have Bridget back in November, and we end every show with a quote. Let's keep building a world where people who have Down syndrome are— when employers open the door for inclusive hiring, they discover skills, passion, and reliability that enrich any workplace. Let's keep building a world where people who have Down syndrome are valued for their abilities, not limited by assumptions. Oh, I love that part. Yes. And that is from the Down Syndrome Association. And in the words of Mary Brocker, when you get up tomorrow, remember, choose joy. This is Joyce Bender, America's Voice, where disability matters voiceamerica.com. I look forward to talking to all of you next week.

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 entertainment Internet Talk Radio. VoiceAmerica.com.