Transitioning into Disability: Clear Cane Chronicles with Dr. Cynthia Overton

There is so much misunderstanding and discomfort around people with disabilities. Dr. Cynthia Overton tells about how when she was using a wheelchair, people would lock eyes with her and refuse to break eye contact or even blink so they didn’t look at the wheelchair. 

In this powerful episode, Dr. Michael Baran interviews Dr. Overton, a fellow social scientist. They discuss Cynthia’s transition from a person without a disability to a person with a disability at age 26 when she was diagnosed with a rare spinal cord injury. Cynthia tells the story of what that was like, how people engaged with her, and how she navigates life now. She also provides insights on the health care system, learned from her experiences living in hospitals for seven weeks. This episode will help listeners think more deeply about a wide range of disabilities, think more critically about the health care system, and learn practical strategies to interact with all people and build a culture that is truly inclusive and safe for everyone.  We will also discuss more lighthearted topics such as Cynthia’s forays into stand-up comedy and her love for The Golden Girls or K-dramas.

Resources mentioned:

Clear Cane Chronicles book

Crip Camp documentary

Transcript

Transitioning into Disability: Clear Cane Chronicles with Dr. Cynthia Overton

Is your company struggling, navigating through high turnover, toxic leadership, or a culture that's holding your team back from reaching its full potential? Well, you're not alone. So here's your host and guide, Michael Baran.

Michael Baran: Hello everyone and welcome to the Culture Advantage Podcast. What do you think about when you think about disability in the workplace? If you're like most people I talk to, you're probably thinking about ramps. Is the building accessible for people in wheelchairs? And that's certainly one aspect of it, but there's ~so much more to think about in terms of.~

~Even physical building accessibility. Yes. But also ~so much more to think about in terms of creating that culture so that everyone with a disability feels that inclusion, understanding and support, and there's [00:01:00] so many different kinds of disabilities. Visible ones, invisible ones, just so much to understand and learn.

Today we have the pleasure of talking with Dr. Cynthia Overton, a PhD doctor, not a medical doctor, but also someone who transitioned from a person without a disability to a person with a disability at age 26, and she's going to generously share. All about what that was like for her, what it continues to be like for her, and there's so much to learn from her now.

Another part of what she went through was extensive experience with the healthcare system in the United States, and that's what her new book is about, where she's advocating for. Person centered care and she'll tell you more about what that is in the interview. So we're gonna start out talking about all that and then we'll get into all sorts of other [00:02:00] things in our discussion.

Hope you enjoy.

All right. Hello everyone. I am here with Cynthia Overton. Cynthia, welcome to the podcast. Thank you, Michael. I really appreciate you having me. I am so excited about this conversation. You have no idea. Yay. Me too. All right. Let me tell y'all a little bit about Cynthia before we get started. She has her doctorate.

She is an author, speaker, an advocate for person-centered care. We'll get into that. Her perspective is shaped by her experience after a rare spinal cord injury that led to seven weeks in three different hospitals where she sought high quality care, negotiated with insurance companies relearned to walk and transitioned into a life with disability.

That whole journey inspired her book, clear. Cain Chronicles Shaping the Future of Healthcare through. Person-centered care. In addition to all of that, Cynthia has a background helping organizations build fair barrier-free [00:03:00] workplaces, and she's the co-author of a forthcoming book called Meritocracy, which uses systems thinking to link talent management, inclusion, and financial performance.

Let's get into it. All right, let's do this. All right, so Cynthia, can we just first start out with your new book? I know it just came out recently, it's called The Clear Cane Chronicles. Can you tell us, tell the listeners about the title and your own story? Just dive right in. Sure. Okay. So Clear King Chronicles.

Thanks for asking. Really grew out of my experience, like you said, in three different hospitals over seven weeks learning how to walk again. And it's really interesting because in terms of the title of the book, I've carried these clear canes with me for more than 25 years. And at first, Mike, when I started using this, I was a little self-conscious about the way I walked.

I was like, maybe nobody will see the cane if it's clear. And then the reverse happened. Everybody saw the cane. It was [00:04:00] a conversation. So the only person who didn't see the cane was when I would leave it on a shopping cart or on a doorknob and forget about it. I'd be like, where's Marca?

But now it's really come to, represent me my life. And really my experience with healthcare in terms of really seeking transparency and clarity, and so that's why I came up with the name Clear Can Chronicle shaping the Future of Healthcare through person-centered care. Oh my gosh. It's like a metaphor and it's all kinds of things.

I love it. Exactly. All right. Can you tell us more though, about your story? What led to all those experiences in hospitals and just from your personal perspective? Okay, sure. So what happened? I was 26 years old at the time, living my best life. I was experiencing all these symptoms at first, like my fingers would just lock up without explanation.

I'd have to use my [00:05:00] hand to manually open them. I was going through these experiences where I knew what was happening, around, but I couldn't move. I just had brain fog. And then, I had all these tests, the doctor couldn't find anything. But then one day my foot stopped working and that's when I went in and she was like, you've gotta go to the hospital.

And so essentially after, they ran a bunch of tests, an MRI found a lesion in my spinal cord. So this was, at the C six C seven region. And this lesion had. Hemorrhage, which was causing the foot drop. And so essentially, I was told that, this. Had to come out. I was 26 at the time.

I was not ready for any of this. In fact, Michael, when the doctor tried to tell me what was going on, I just, I was in such denial. I was just like, you can just tell them. And, I was referring to my family in the room and he was like, no, you need to hear this [00:06:00] too. And yeah, it was a. Very scary time.

We did not know what was going to happen. This was back in 1997 and. Healthcare, or I should say medical care and the science and technology just had not evolved to where it is today. And so there were very few surgeons who could even perform this operation.

It was very risky to make a. Long story short, I ended up, getting an excellent surgeon to perform the surgery. After the surgery, I was paralyzed from the waist down and went through a lot of, physical and occupational rehabilitation, along with a little recreational therapy thrown in. And got to the point where I'm walking now with. A cane. So now today, my health is great. I consider myself recovered. I do walk with a cane. I have a limp. I live in pain. Here's an interesting fact that a lot of people don't know. I [00:07:00] live in pain every single day. Every single moment of every single day.

But I'm just so used to it over 28 years that I really don't even think about it until I bring it up like I just did. What do you do to not think about it? What are your strategies? Yeah, so from what I have been told, sleep is just great. Across the board for just overall wellness, and I have found that when I get sleep and rest and movement, sleep, rest and movement really helps.

I will also say that for some of the muscle pain, the musculoskeletal pain, acupuncture has really helped, but it's the neuropathic pain that remains and just bothers me all the time. I've been in and out of physical therapy since I had the spinal cord surgery. I made a decision early on not to take.

Medicine for the pain just in terms of, it's just not something that I [00:08:00] wanted to do long term. What did that make you realize or think about the healthcare system? Like how did that all lead to you getting so interested in that and writing a book about it?

Sure. So let me just say in general, in terms of the healthcare system, a lot of things within the healthcare system. That people might not realize is negotiable. So for example, we were able to find an amazing specialist to perform the surgery. He was out of network and so even though he had the clinical expertise, the background, he did like more than 200 of these surgeries a year.

The surgeon, who the health insurance company was gonna assign to me for a year. The best one that they would pay for did 10 a year. Now, the spinal cord is very important in terms of, it controls how you walk your bowel, bladder functioning how you regulate temperature, perceived [00:09:00] pain. I tell people the, I.

Reach is massive. If Beyonce was her body part, she would be a spinal cord because it just controls everything, right? So it was really important to get a surgeon that, was familiar with this procedure. And so that's why I say things are negotiable. My parents. Went back and forth with the health insurance company to get them to pay for the surgery, and

they spoke with people who knew the health insurance company. They spoke with policymakers. They really. Would not take no for an answer, but they kept on getting, no, they kept on trying. They were, actually ready to take out a loan against the house.

And in the morning that my mother was going to fill out the paperwork at the bank the insurance company called and said they would pay for the specialist to do it, but it was in their best interest, because, if. Something had gone terribly wrong, then they [00:10:00] would've either been faced with, more physical therapy that I would require and then, death was also on the table.

And so that would've opened up a whole nother can of worms in terms of, we tried to take, my family's saying I wouldn't have been around to advocate that. Yeah. My family's saying we tried to get you to have somebody who was skilled in this to pay for it, and you refuse so. At the end of the day, Michael. I would say with that decision, everybody won. But healthcare in general, I would say you have to be your own best advocate. And when I say that, I think of it within the context of the circle around you. I was 26 at the time, I didn't know about pushing back and all that.

Yeah. My family did. And they. Really advocated for me to get the best care possible. Now, when it comes to person-centered care, I didn't have this vocabulary back then. I didn't know anything about person-centered care. Yeah. And [00:11:00] this, did anyone, when did that start being a thing?

Yeah, so it's a thing of where person-centered care actually has roots that are dated back decades. Same thing with patient-centered care, and they're too related. Distinctive types of healthcare delivery. It's just a thing of where back then it just was not as common to see that type of healthcare delivery as it is now.

In the book I draw on different sets of principles for person-centered care. One of the sets is called the Picker Principles on Person-Centered Care, and they're developed by the Picker Institute. They're based. In England, and I draw on those principles as I describe my experience in three different hospitals over seven weeks.

And then I also draw on the National Advisory Board's principles. And while they don't. Use the terminology, person-centered care specifically, they align [00:12:00] with person-centered care. And those principles are really focused on older adults and people with disabilities. So the way that I came to this I really attribute this to my surgeon, my neurosurgeon, Dr.

Fred Epstein. No relation in case you're wondering. But Dr. Epstein was just this amazing human being, when we first found out about him. We did not know how to get in touch with him because this was like before the internet and people were online and Right. It was a thing of where my sister-in-law found him in Lexus Nexus, and so we knew he existed.

Yeah, I know. That's so cool. We knew he existed but we didn't know how to get to him. My cousin, who's a physician. And we knew that he was in New York. My cousin, who's a physician told my mother I, I don't know him, but I have a friend in New York who practices medicine [00:13:00] there. Maybe he knows him.

So my cousin called her friend, says, do you know Dr. Epstein? And the friend says, not only do I know him, I'm having breakfast with him in the morning. What? Yeah. And that's how we got connected to him. We got word that, my father, my family should call my father called the next day.

The person who answered the phone says he's been expecting your phone call. The discussions beforehand was, all right, we need to get her MRI films. And back then, this was before everything was digitized, so my father had to find a place that made copies of these films, get 'em to New York Federal Express.

Then when Dr. Epstein saw him, she has to come out. She has to see me right now. Immediately my father and Dr. Epstein Connect. Dr. Epstein is really trying to problem solve in terms of understanding the insurance company doesn't wanna pay. Oftentimes, these out of [00:14:00] network specialists are more expensive.

So he told my father, if the insurance companies pays, I'll take whatever they pay. I can't do anything about the hospital administration fee, but with the surgeon's fee, just whatever they pay is fine. Insurance company ended up paying for the surgery that kind of goes to the principal related to, fast access to care.

He understood the urgency and was doing whatever he could to remove barriers to get us out there to New York for the surgery. And then once we get. There. He really exhibits another principle of person-centered care, which really relates to empathy and great bedside matter, the whole compassionate piece.

And it's funny, Michael, because when we got to New York for the surgery, he wanted to meet with the entire family and engaging family is another principal. He wanted to engage with the entire family before. For the surgery. So we go to his office, and this was a few days before the surgery. We go to his office and [00:15:00] the door plate outside of his office, it just says Fred, right?

It doesn't say Dr. Fred Epstein. Just Fred. So this is the guy who's about to dig into my spinal cord. He's going by just Fred, right? Not even Mr. Rogers goes by just Fred. But that was his way just to really make us feel at ease and feel comfortable. Yeah. And so Dr. Epstein, was the first, and I've had, like my dentist was good when I was little.

I really liked him, but he was the first interaction that I've had, I would say with a healthcare professional as adult. As an adult, that really made me think, wow, this is what healthcare can look like. And that was really what planted the seed for me, thinking about. Healthcare and is really, one [00:16:00] of the inspirations behind the book.

Yeah. And now you're giving us pieces of it, but can you give us the elevator pitch, just what is person-centered care? Ooh. Ooh. What is person-centered care? Okay. The best way to really describe person-centered care is to talk about other types of healthcare delivery first. So you think about traditional clinical care, you go to the doctor, you tell the doctor what's wrong.

The doctor says, all right, here's what you need to do. Next. All right. Then you've got patient-centered care. And that involves the patients more in terms of getting their preferences, their interests shared decision making. But then when you have person-centered care, you're thinking about the entire context of a person's life.

Outside of the clinical setting, you think about, of course, what your preferences are, what your goals are, how different treatment options might impact your personal life. Those are all a factor. [00:17:00] Person-centered care is really about shared decision making, so not you just.

Telling your doctor what you like and them saying yes or no. It's really more of a collaborative approach to healthcare. I always say that it's healthcare for people who live in the real world, not in a medical check. Because we're all different.

The easiest way and the most, I would say recognizable way to explain person-centered care is to think about it like the evolution of television. So remember back in the day we had three big network channels and those kind of like. Cartoon channels, those two cartoon channels, that would be traditional care.

Right? Very limited in scope. Not very personalized. Then you think about the evolution to cable, you have more choices, but still you had the set system found within somebody else's schedule that's. How I describe person-centered care, and now we're in the [00:18:00] streaming era, everything is on demand, how you like it, the system helps you make choices, supports your choices.

And that's like person-centered care. Okay. And does it happen? A lot of places, person-centered care. Is it just really rare? Sure. So I, it's so interesting because I have not heard a lot of people using, vocabulary, person-centered care. I hear a lot of patient-centered care, but not too much person-centered care.

Let me give you an example of person-centered care that I have experienced. That I've actually shared this with the organization, so I'm a member of One Medical. Are you familiar with One Medical? Okay. So it's like I, this is how I describe it. I don't know if this is how they would describe it, but I describe it as a concierge service.

I don't think they would describe it as sat. To tell you the truth, but essentially they've got this network of doctors. They have an app. You do everything in terms yourself, in terms of going online, it's very easy to make an [00:19:00] appointment. You can make telehealth appointments. You can make appointments for the next day if they're available.

They've always been available for me whenever I've needed to make them. And so essentially you subscribe. He threw a big tech company, but it has really fit into my life on a number of occasions. I'll give you the most dramatic one, but there have been other times where I've been out of town and needed to access one medical, so I was going to a family event in Detroit.

And had developed an abscess on my skin. I know that these things, if they burst, can be very dangerous. So I decided to be responsible. So I went online, made a telehealth appointment for the next morning because I had a flight the next day. So I go online and, the doctor says, okay, what's going on?

And I tell her, she was like, oh, you gotta be seen in [00:20:00] person for that. I was like you don't understand. I've got a flight I have to catch. And so she just goes into problem solving mode. So what she does is she. Puts in a prescription for antibiotics across the street from where I live. Then she gets online on her.

The one medical platform finds a physician that is on the way to the airport, makes an appointment for me. I go get the antibiotics in case I need them. Come back to the house, pick up my bag, get in an Uber. I. Take the Uber to the doctor's office, which Michael is literally less than a half a block off of the route to the airport.

I get seen cleared to fly. That doctor makes another appointment for me when I get back in town and I'm on my way. And so that's really. Care that fits your life. I had a similar experience. I was in Chicago and checking out [00:21:00] of an Airbnb stumped my toe. My toe, my baby toe went that way. Everything else was this way.

I was about to get on a plane, got on the one medical app, found a one medical office that was on the way to the airport, the healthcare provider looked at it, told me exactly what I needed to do told me the medicine that I needed to take, wrapped it up, had me, get it x-rayed and I was on my way to the airport.

So that's what I mean in terms of healthcare that really fits your life. So is anybody, doing it, according to principles for person-centered care, I would say there are. Folks doing it. I just don't know that it's framed in this, way of person centered care, but it's definitely person centered care.

That sounds pretty amazing. Not like most of my healthcare experiences in this country. Ironically, I've had great experiences like that in other countries. Where I wasn't even a citizen and didn't even have [00:22:00] insurance or whatever. But that sounds pretty good.

Now taking a detour one of the things you talk about in your book, which I think would be really interesting for people to hear about is how you talk about transitioning from a person without a disability to a person with a disability. Yeah. Can you talk about the mental part of that?

Yeah I would love to, and I know now that there's research behind transitioning into disability at 26. It never crossed my mind look to see how this worked and you know all that. So I'm happy to share my experience transitioning and let me tell you, this was my experience.

So for me it was confusing. 'cause a lot of times with the transition in life, there's notice or a ceremony or there's something involved to mark, a transition. I had no idea I have disability, Michael. I literally did not get suspicious until the doctor. Offered me [00:23:00] paperwork for disability parking.

And was like, who's this for? I was in a wheelchair and I was confused. And the reason that I didn't know I had a disability, because, growing up I didn't really. Know of anybody who identified as having a disability. Like I used to date a guy who was born with no fingers.

On one hand, I just thought that was part of his charm. Nobody was going around giving out disability stickers. Right. But I will say that once I understood what was happening and that I would get one of those great. Priority parking spots. I was like, yes, I have a disability. Where do I sign?

But it was a thing of where I just had no idea. But I did know of course. I was, things were different. And what was so not, I dunno if the word would be confusing. It was a thing of where I just felt like the same person on the inside. But I [00:24:00] wasn't treated as the same person.

Whether it was people who would engage with me, but just not. Be sure not to look at the wheelchair. They would just stay focused on my eyes, or even people looking at me with, just extreme pity. I remember one day, this was actually when I was in the hospital in the rehab hospital.

We got to go out for a field trip. This was for a holiday shopping, and I was just so happy. To be out and like I was on a mission, this was my one opportunity to get some holiday gifts 'cause I had to go. Back and, so I just remember being on the accessible van, and a lady just looked at me with, oh she looked like she wanted to cry.

And honestly, I felt I wanted to say it's okay. I'm having a great day. I'm out shopping. But [00:25:00] transitioning was difficult and I just didn't know what to expect. And back then, this was the nineties. Of course everybody, was so focused on my physical recovery that nobody.

Offered me any type of support when it comes to dealing with these changes and emotions. And I was 26 years old and literally didn't, I would go to sleep at night. Literally not knowing if I was gonna wake up in the morning. But there was no emotional support around that.

None about transitioning into disability. And back then, my only concern, Michael was. Will I walk again? And not even, will I walk again? Will I walk straight again? And I wish that I had been more focused on quality of life I didn't know what I didn't know back then, but I've gotta tell you, sometimes, it's interesting how folks even respond now [00:26:00] when I walk with a cane.

But I'm gonna tell you, I'm so focused on other aspects of my life. Don't get me wrong. Being disabled is a part of who I am. Just like being black is a part of who I am. Being a woman is part of who I am. And I actually love all those things about me. There are so many things going on in my life though that I can't really just be defined by that one little slice, but it's an important part about me.

It's just not everything. Right. Yeah. Gosh. Thank you for sharing all that. It sounds hard to go through that without. Mental supports of any kind. Yeah. One of the things I'm curious more about how people react to you. 'cause on this podcast we talk a lot about inclusion and part of inclusion is accessibility and engaging with people who have disabilities and making sure everyone feels valued in the same way.

And there's so much misunderstanding. And confusion about disabilities that people [00:27:00] often don't know what to do. And like you're saying people staring at you it's funny, the way you describe it, how people would not blink, they just stare at you, so they didn't inadvertently look at the wheelchair.

Or, when I was doing interviews leading up to writing my book, a guy in a wheelchair was saying, yeah, somebody's always making a joke. Oh, don't go getting a speeding ticket with that thing. Trying to show that they're comfortable when they're really not. And five people might make that same joke in one day or something.

Yeah. So I'm curious if you can talk more about. People relating to you and how it feels and how you negotiate those interactions? When I used a wheelchair, it was challenging because I was going through a period where and I think that it is. Different for people who are transitioning versus folks who have been disabled for a longer amount of [00:28:00] time.

So as somebody who was trans, I was still trying to figure myself out. But I will also say that there are so many different rules of society that. People are not accustomed to activating. And I think that, at least for me, it's always been important to give grace because I think that we've all been in a situation where we weren't really sure what to do if that makes sense.

So I would say that yes, I have experienced subtle acts of exclusion they were prompted by something external, so even they were conscious in an effort to be appropriate that may or may not have resulted in the outcome that everybody would have wanted. But I will also say this, Michael.

I would also say that I have almost committed [00:29:00] subtle acts of exclusion against myself. Me being disabled and what happened. That's a part of who I am. Michael, there have been friends that I have known for years who did not know my backstory.

And it's not a thing of where I was trying to hide anything. Like I said, I'm just always focused on so many different things and I'm fortunate to have, a really diverse group of friends and network and there are just so many other things that are interesting Yeah. That are going on. I'm even surprised that people are interested in my story now 'cause it's just like a historical fact to me anyway.

Because I wasn't trying to be intentional about not saying things, maybe people are waiting for me to open the door that I just haven't opened. And I'm just shocked when I find out that it's wait a minute, how have we known each other for all of these years? And I never mentioned, or this just never [00:30:00] came up.

And I think that for me, here's the thing, I think that. I don't know. I haven't tested this theory, but I think that for some people it's an elephant in the room. And for me it's, just everyday business. Yeah. I even had a guy that I used to date a long time ago.

I had a meal with him a few weeks ago. And this was somebody, I don't know how serious he was about me, but I was serious about him. And we're very good friends now. But one of the things he said was, he asked, did I ever treat you in a way that was different or that was inappropriate?

I just, and 'cause we dated like 10 years after I had the surgery. And I think it was a thing of where I never. Said too much about it. It was just a thing of where I walked with a cane and he never probed and he just learned so much from the book and he was just really surprised that [00:31:00] there was not as much conversation.

Yeah. And it was just a thing of where I just. I, like I said, I'm just so focused on other things. Yeah, that's so interesting and I bet people don't want to say the, I bet they're trying so hard to not say the wrong thing 100%. And probably part of that is even just asking about it.

I would say that you're absolutely right and I really think that it just goes to show that, we've got these social norms or these rules or whatever, and then we've got reality, right? And at the end of the day. Socializing really is, not just about these rules, whether they be written or unwritten.

It's an art and a science in terms of socializing. And sometimes it's a hit and sometimes it's a miss. Yeah. And we don't do ourselves any favors necessarily in this country. The way everything tends to be [00:32:00] so segregated and so people don't just get regular experience interacting with people who are different from them, and I think that includes disability.

Yeah, I think you're right. 110%. And I think that's probably one of the reasons that I really appreciated when opportunities do come up to, just engage with people who are different. Yeah. For sure. I love that too. And it's, oh, it's constantly surprising to me that some people don't really like that.

Folks listening might not know this. I know this, that you've done a ton of work on inclusion in different industries. And I wonder like, how does this inform the work that you do creating inclusive spaces? And can you tell us more about that? Yeah, sure.

My background in, when I think about my education background, I studied educational technology, but my focus was on students with disabilities and how they [00:33:00] use technology to engage with their learning environments. ~Oh, I did not know.~

~I didn't know that. Yeah. Yeah. ~At the time when I first started my doctoral program, this was 1999, and we had just transitioned very rapidly to everything online. We still even had the ethernet was new back then, before that we had the dial up, but, high-speed ethernet in our dorm rooms in graduate school.

Bottom line is. Technology really helped me and I wanted to study how it was helping other folks with disabilities. And so that's how I got into the whole technology and disability, whether it be assistive technology. Technology that is accessible for people with disabilities.

And in studying that, I also studied policies and legislation that impact people with disabilities. So that is really what started my work in the disability arena. And then [00:34:00] that kind of broadened. To more general diversity, inclusion, equity, belonging work. And I know that you worked in the tech space a lot doing that diversity, inclusion, equity, belonging work.

What, tell us about the tech space now. What's different about doing that work there? Yeah, so it's interesting just in terms of the environment and the culture. When you're in the tech industry, the culture is built around speed. You're failing fast, you're breaking things. That approach can really expedite innovation.

I would say that it does not translate well when it comes to real structural issues. And so I would say that's how it's, different in tech. You can't really just, fail fast your way through systemic barriers that have been built over decades. And so I think that what I really learned from that [00:35:00] field is that a lot of times we really,

underestimate how intention, consistency, accountability, how important all of those factors are when it comes to, creating a barrier free and fair workplace. It's not about just programs and headcounts, it's really about redesigning systems to make sure that people have real opportunities to thrive.

So yeah, and that's actually something that Paula Ano and I dive into in our upcoming book on Meritocracy, which you talked about earlier. So that'll be released. Spring of next year, and that really takes a look at how organizations can link talent satisfaction and business performance by really building these systems that work for people instead of working against people.

Okay. I love that. Could you talk a little bit [00:36:00] more about that? Obviously meritocracy is this idea that's in the news a lot. There's a lot of misunderstanding or misuse, maybe deliberately. Yeah. Tell us more. Sure. Yeah. So we really look at and this is something that. Stems from Paulo's previous work on his book Measuring Inclusion.

So a lot of times people will think that meritocracy and DEI are two separate things, and with this book we introduce this inclusive meritocracy framework that really goes to show that the two are interrelated and are essentially the same. But to your point, oftentimes. The term meritocracy has been misused and so we really go into deep, what does that look like? What does inclusive meritocracy look like? And then more importantly, how [00:37:00] can organizations instead of focusing on individual. People or individual actions, how can they focus on systems to really future proof and protect their workforce?

That's great and so timely and I hope that everyone reads that one as well. That's so important showing that these are not opposing things. Exactly. Yeah. I wanted to talk, I'm sure people can already tell that you're pretty funny. Your book is really funny for a serious topic that it's talking about.

Thank you. Could you talk more about that as well as I know that you're interested in standup. I would love to hear about that. It's a cool combination of things. Yeah. Yeah. I will say that my work with standup has really prepared me for [00:38:00] the book, for talking about the book, and it's just a lot of fun.

It's so interesting 'cause people say all the time, how do you. Get up there on stage and I dunno. For me, it's just fun. I'll tell you, the most difficult speaking experience that I have ever had in my entire life was when I launched the book and gave. Two minute remarks and I was just I don't know.

It was a culmination of a few things. Just, seeing people there and everything that has happened over the past 28 years kind of coming to a head but I was very nervous. But when I'm on stage, I dunno, I forget to be nervous. It's a lot of. Fun because you can use standup comedy as a way when framed appropriately to really talk about things that are very important to you.

Things that might be uncomfortable otherwise, I. Talk about disability stuff all the time. With [00:39:00] standup, and it's just, it's challenging because just like we were talking about earlier, a lot of people, we've been conditioned not to laugh at anything

disability related. Now you got somebody on stage with a disability that's trying to get you to laugh at these disability jokes. So I tell 'em, it's just, it's not like Marion Barry. Remember Marion Barry? I said, you're not gonna be thinking tonight that Kane set me up. No, it's okay to laugh.

That's great. That's cool. Do you feel like people come out of that having learned. Not just laughed, but having learned something I do think that they come out learning something new. And for me, I never want to make anybody feel bad. Even if somebody intentionally [00:40:00] disregards my feelings and maybe they even have the intention of making me feel bad, which as a grown woman, I don't experience that much, but that's them.

And I can't control what they do and how they engage with people. I can control how I engage with people. And I want people leaving conversations with me, feeling informed, educated, empowered, and feeling good about themselves. And so that's my main focus. Whether I'm delivering a formal speech or if I'm on stage doing standup, I do want people to learn, but I also want them to feel.

Good. And I don't believe in punishing people. Especially for mistakes. Yeah. And I'm sure you encounter lots of mistakes as do people with a lot of different disabilities. There's such a range, right? There's a I am on the receiving end of mistakes.

I encounter mistakes, and I make mistakes. So I want people to have [00:41:00] grace with me. Yeah, for sure. I can think of times I have too. There's the whole normalization thing that happens. I bet when you do that too, that's so important for people to get sometimes when. When I can tell people don't know a lot about disabilities or feel uncomfortable, I'll even recommend a documentary like Crip Camp or something.

As a way for people to just get a little bit normalized with how people are, like you said, just living their lives and not always thinking about that thing that you're thinking about. Exactly 110%. At the end of the day, everybody just wants to be part of society. Everybody wants to be included.

And here's the thing, everybody wants to be seen. And so I think that, whether it's standup or documentaries or other interesting outlets. All great [00:42:00] opportunities for people with disabilities and other folks to just be seen and understood and respected. Yeah, for sure. That's a good place to start to wrap up, but first you gotta ask you, in the book, you talk about your love for the Golden Girls and I gotta ask you about that.

Okay. First of all, who doesn't love The Golden Girls? I love the Golden Girls. As folks may know, the Golden Girls came out in the eighties. And I love the Golden Girls because first of all, there are these group of women that were so different from me and they were so funny, and the writing was so sharp and I got a window into their life.

And, yes, their characters, but they were just intriguing. But then the fact that these women were all different from each other. But they just blended and complimented each other so beautifully. When the Golden Girls came out, I was in my twenties and I got to see how these old ladies were living.

I dunno [00:43:00] how I feel about the Golden Girls now because I'm technically the same age as they were that, so that's wild, isn't it? Not exaggerating. But the humor is classic. The hairstyles not so much and the attire, but yeah, I love. I love two things in life that just bring me joy.

The Golden girls, and I love my KDRs. If I could have any job in the world, it would be like doing consumer testing for KDRs. And giving people might not know what that is. You gotta explain it. Korean dramas. And why do you love Korean dramas? The Korean dramas that are. I'm making the distinction because I have seen some that I'm not crazy about, but the ones that I love, they just really do such an amazing job of capturing human emotion.

And that's related [00:44:00] to love. It's related to humor, related to family. We're talking about themes that are very universal and even though. The actors and even the context are from a different background. Anybody can see themselves in role, those because they just cover human emotions.

You're making me nostalgic for living in Brazil and watching the Brazilian novellas. It's so popular that everyone would watch particular ones. They got really popular. You could be out on the street and it was coming on and you just pop into a convenience store and watch with the people that are working there on the tv there.

It was just such a communal experience that I love too. Yeah. That is very cool. Okay, Cynthia? I always end with giving people an optional homework assignment if they want it, something they could do or think about or read. What have you got in mind [00:45:00] that you would suggest?

And just to let you know at the end, there are a ton of, I call them insights. You might call them recommendations for patients, providers, and payers that are practical, actionable, all that good stuff. But when it comes to one thing that you can do today, here's a little. Optional homework assignment that is not gonna be fun or feel good at all.

But here's what I would suggest. I would suggest that you go online or go through your mail, find your insurance policy and actually read it. And as you're reading it, identify three questions. Then take those questions and call your insurance company and get the answers to those questions. If you speak with somebody who is particularly helpful, ask them their name and their telephone number so that you can reach them directly should you need to.

Then jot down the things that made the [00:46:00] experience, easy. And then also jot down the things that made the experience difficult and do what you can to. Resolve what made it difficult. And the reason that I want you to do that is because that is a dry run. The time to engage with your insurance policy is not when you're desperate.

It's when you don't need it, that you're gonna wanna learn it. And I hope that you never have to rely on it for an unexpected health condition. If you do, I promise you going through that exercise is gonna put you a lot further ahead. Doing it now when you're in a clear mind space, is going to make things better for you, should you need to draw on that information.

Wow. Important and so not fun. Thank you though. That's such great advice. You lived it and so thank you for that. And it's just, it's been so great talking with you. I [00:47:00] know people got so much out of that. Do you have any final thoughts? No, I just really appreciate you holding space for these types of conversations.

Michael, the need could not be greater than it is right now for conversations when it comes to culture inclusion, people coming together, people understanding differences. And people working together to find solutions to common problems and to achieve common goals. So thank you for all of the work that you invest in this to make this podcast happen.

Thank you so much and so beautifully said in terms of the urgency of all of that. All right, awesome. Thank you Cynthia. And bye everyone. Bye. Thank you.

Okay. Hope you enjoyed our discussion. Cynthia's amazing. I'm sure you can see why we've been friends for gosh about. [00:48:00] Eight years now. So you've also got your not very fun homework assignment. And if you're listening right, when this comes out and you're in the United States, I should clarify because not all of you're in the United States, but if you are, and you're listening to this when it first comes out.

It's getting near the end of the year, and you might be switching healthcare plans, so maybe you could even use the homework assignment to look super closely at your new plan options or the new plan you've selected. Now, speaking of that. I know that costs for health insurance plans are gonna go up for many of you way up, potentially.

And I feel that pain and I find this whole system in the US maddening. I think quality, affordable healthcare should be a basic human right, and the way that some people suffer with poor care and the way some people even go bankrupt because of medical costs. It's just. Not right. Think about what Cynthia [00:49:00] was talking about with person centered care and how wonderful it worked for her life, and we should all be able to experience that.

And yet I think it's pretty rare. All right, lots to think about here. Be well, and I will talk with you next week.

So that's it for today's episode and the Culture Advantage Podcast. Head on over Apple Podcast iTunes or wherever you listen and subscribe to the show. One lucky listener. Every single week that posts review on Apple Podcasts or iTunes, we'll win a chance in the grand prize drawing to win a $25,000.

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