Sarah Kirwan

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Sarah is the Founder and Principal of Eye Level Communications, LLC, a California-based disability and woman-owned small business. She is also the host of the Incluse This! Podcast, a movement for disability equity. Sarah is a disability access and inclusion consultant and trainer, and public administration professional, with more than 25-years of experience. Her work and research for the last decade has focused on healthcare, administration, communications, training, and policy. Sarah was diagnosed with Relapsing-Remitting Multiple Sclerosis in 2011, and Superior Semi-Circular Canal Dehiscence, a rare inner-ear disorder, in 2019. Her personal and professional experiences have made her a passionate disability rights champion, and she’s dedicated to having critical conversations that connect people to each other, to their communities, and most importantly, to themselves. Sarah earned her Master of Science in Public Administration degree from California State University, Los Angeles.

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Welcome to the Enabled Disabled Podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called PFFD. My journey has been about self-acceptance persistence and adaptation. On the show, we'll explore how people experience disability, how the stories we tell ourselves can both enable and disable, how vulnerability is a foundation for strength and why people with disabilities can contribute more than we imagine. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.

Sarah Kirwan is a disability consultant and public administration professional with more than 25 years of experience. Her work in research for the last decade has focused on healthcare administration, communications, training and policy. In 2011, Sarah was diagnosed with relapsing remitting, multiple sclerosis, and in 2019 she was diagnosed with superior semicircular canal dehistants, a rare inner ear disorder. This combination of personal and professional experience has made her a trusted resource in her sphere of influence and a passionate disability rights champion. In our talk, Sarah shares her passion for wheelchair basketball, her journey to figure out her diagnosis and so much more about being an advocate for disability rights and how she problem solves.

Sarah understands so much about the disability space because she's lived it and worked in so many amazing roles, from being a hospital administrator to her time working in Congress. This is the first of many conversations with Sarah, not just because she's terrific, but because she has so much to teach us as you already know. We have an exciting announcement. There is now a recording feature on our website where you can ask past guest questions as well as future guests. If we get enough questions for past guests, we'll invite them back onto the show just to answer your questions.

Stay tuned to the newsletter where we will be previewing future guests so you can ask your questions ahead of time. Just go to www. Enabledisable.com and press the Start Recording button to leave your questions. Thanks for listening. See you soon. All right. Sarah, thank you so much for taking the time to be here. It's always great to see you, and I really appreciate it.

Absolutely. It's such a pleasure. I'm thrilled that we are finally here today to get our recording done. And it's been a really nice lead up with all the conversations that we've had prior to today. So I'm very grateful for the time.

Absolutely. I am, too. And I'm looking forward to not just this episode, but the future things that we're going to collaborate on together. So I would love to talk about what your involvement is with wheelchair basketball because I'm a big fan. I love seeing it again in the Paralympics recently. So, yes, tell us about that.

Oh, my gosh. Paralympics were my favorite. This year. I watched all of the Women's USA team women's wheelchair basketball games I have played with or know all of the women that are on that team, which is something that I haven't experienced previously. And so that was really cool to actually watch the women that I've played with and against and educated with and been in the NWBA with for the last six years. Wheelchair basketball is one thing that a lot of people don't know about me that I do.

And for me, wheelchair basketball came into my life. I was diagnosed actually, I got very sick in June of 2010. I was diagnosed with Ms in 2011 in that January, and I had a really difficult time with my diagnosis with my health, and I was very active early on, right after I was diagnosed. I've always played sports my entire life. I was a big surfer for a lot of years here. I've coached volleyball, played volleyball, coached basketball, played basketball, all able bodied. And now I have this disease that is kind of hindering me from having the same level of activity that I would want to do.

Initially, when we got some of my symptoms under control, I was able to run each day, and I was very healthy in that way. And a couple of years into my diagnosis, I was living in toxic mold, and my health took just a downward turn from that point, and we didn't know about the mold. I didn't know about the mold, and it ended up there were nine units infected in the area that I lived in, the condo that I lived in, and the toll that it took on my health, I should say, was horrible.

I was experiencing more fatigue, more brain fog, all of my symptoms, more depression, more anxiety. It got to a point where I was having suicidal thoughts and ideologies that I didn't recognize at the time. And wheelchair basketball for me was my saving Grace. To be quite honest, when I started playing basketball, wheelchair basketball, I was an assistant hospital administrator and public information officer for Rancho Los Amigos National Rehabilitation Center, and we have a juniors team, an adult team at Rancho for wheelchair basketball. And we were putting on a tournament where we would come and have able bodied and disabled people playing this tournament.

And I was really excited. And I started playing wheelchair basketball and this group of men at Rancho the way that they accepted me, regardless of how I looked, they never questioned if I would say, hey, I can't catch the ball today because I can't feel the ends of my fingertips, right? Oh, you guys will need to yell a little bit louder on the right side because I am not going to hear you on that left side or, hey, I just can't see right now. I just went blind from pushing myself too hard and overheating, and I just need to take a break.

And it was the first time since my diagnosis, and this was about two years after my diagnosis. It was the first time where I felt accepted. I kind of live life between disabled and non disabled because of how I look. There are a lot of times that I really need to prove that I belong in a place that is saved for people with disabilities as it should be. But that comes with a lot of mental toll that we're always defending ourselves, always having to say what's wrong with us, always having to explain exactly what it is.

And with wheelchair basketball, I didn't have to do that. Two years after I started playing, I had this great opportunity. Two young women that had played at University of Arizona on their women's wheelchair basketball team started a women's team in Los Angeles, and I started playing with them in 2015, and it just changed my life. These women, still, to this day, are my family. That is how we are the other day. I just spoke with one of our athletes, and I haven't spoken to her in probably two years.

And we had a two hour and 53 minutes conversation, and it was just like we talked the other day. And so basketball became for me, this community where I could be myself or I could talk about the things that were going on with me, health wise, physically and mental health wise. And it was a way for me to kind of come back into my own with this diagnosis and understand that my life was going to look different. But it wasn't going to be less full. It wasn't going to be less exciting or filled with opportunities for things that I could do and enjoy.

And so I have been with this team now for six years, and I've had many different roles. At first, when I started playing, I was like, I'm going to be this really great wheelchair basketball player. Well, then you actually sit in the chair and you have the ball, you have the wheels and they make it look so easy. But it's not.

I can tell when you watch it, especially the Paralympics, both men and women, to see how quickly they can just turn on a dime in their chair, the physicality of the game, the skill to catch, to dribble, to shoot, to pass. You can see that they are elite athletes that they are making it look ten times easier than it actually is.

Absolutely. And the way that these elite athletes are one with their chairs when they go down the court and they maneuver, it's incredible. It's incredible. Their athleticism and commitment to it. You know, it was really one place where I thought, okay, here's an elite athlete and here's me or other people that just want to play recreation. Right. And there's a mental difference. There's a physical difference, all of it. But regardless of what levels we were all on, it was a family. It's been a family, and we've had a lot of changes.

We're the only women's wheelchair basketball team in the state of California. Our two founders have gone on to do different things. Paralympics, PhDs, all of that. And so I've been holding on to this women's team in California, shield maidens wheelchair basketball. And for the last five months, I have put my business on hold. I have turned my focus, and I have really committed myself to how do I find a home for this women's wheelchair basketball team that gave so much to me that I also want other women to have the opportunity to play sports, have that Camaraderie have that collective access and access to resources.

One of the things that I've really been thinking about over the past few months is if we think about all the tools that we use to educate, right. We have trainers. We have consultants, we have workshops and seminars and conferences and summits. But if we look at sports, recreationally and competitively, we have a huge opportunity to address systemic barriers through sports.

Most of the time. I'm sorry to interrupt, but it's just I wanted to highlight. One thing is, I think a lot of people who don't play sports or who never got involved with sports. You have this image of growing up in elementary school and junior high in high school where you weren't picked on the team. You weren't that athletic. People kind of turned you away. You weren't accepted, right? And yet I think if you persist in it or if you show an interest or if you go to other places, it's what you said.

There's acceptance. There's camaraderie, there's confidence building in a fundamental way. What do you think the people did in your experience with wheelchair basketball? What did they do to make it accepting? What did they do? Why are these elite athletes still, they're just as happy to play with you and bond and experience it together. What do you think? The difference is what's the magic there that we can spread to other places.

And I'm just going to speak specifically about our team because I think this can be applied generally as well. The magic of the team is that we're focused on each other. We're focused on helping to empower one another. There is no judgment of how you manage your disease or your injury. There's no judgment of the things that you want to say. You can't necessarily. They're very different conversations that you wouldn't have with a non disabled person. It's this understanding that proximity doesn't allow you to have. It's an understanding.

It's rooted in such a deep understanding of trauma that people have experienced with their disability. And sometimes that trauma is once. Sometimes it's ongoing. And so it's that acceptance. And that understanding that not every day is a great day. I don't have to show up every day with the best attitude and a smile on my face. If I feel that day that you know what? I'm over it, I want to get in my chair. I want to play some ball, and I'll talk to you guys later and let's just play.

And I think there's also not an expectation that we're all going to be the best athletes in the world. There's the expectation that we all want to come out and spend time together. And we haven't actually gotten to be together since our last tournament in December of 2019. And that's been really difficult for all of us, and we've stayed in touch through social media and through Zoom calls and things like that. But I had a friend and fellow teammate the other day say to me, I just miss our conversations.

I just miss being able to talk the way that we talk. It's hard to explain. I'm not coming up with a great example right now, but to have the conversations that we have with no judgment, there's just no judgment. And I think that's because it is based on these experiences that we all bring to the table. The other thing that I love about sports and especially in the disability community, is that the disability community, whether we do it ourselves or whether the organizations that organize and support the disability community help with this.

It's a siloed community. So for me, with multiple sclerosis, I have a self help group with people with multiple sclerosis. Right. And I have this with people with Ms and a walk with people with Ms. But what about other diseases that are similar to multiple sclerosis, lupus, Rheumatoid arthritis? If we're looking at ALS or Parkinson's, there are other people that are having similar or at least shared experiences that can bring us together. But we have these larger systems in place that are saying, no. The way for us to make money and get research for this group of people is to say that this group of people is most in need, and it becomes oppression Olympics that I with Ms and more in need than you with whatever that may be as opposed to coming from a place of disability justice principles, which is a relatively unused practice.

But I do apply this and try to apply these principles in all of my work. When we look at what we can do with disability justice, when we look at cross disability collaboration, when have we heard of a large group of organizations addressing the Ada 31 years later, which is something that we all want addressed to come to the table and say, all of the nonprofit organizations that are focused on people with disabilities, we are going to have a collective voice that goes to our legislators and says, we want the Ada fully funded, fully implemented, and fully enforced.

Next, we want the IDE, fully funded, fully implemented, fully enforced. Instead of coming together as a group, we silo ourselves and we play who's better than who, so that I can get more money and attention and whatnot? And in wheelchair basketball, it's not that we have multiple sclerosis. We have spinal cord injury, we have traumatic brain injury, spina, bifida, postpolio amputations, limb differentials, you name it. It is the first time since I was diagnosed ten years ago. Basketball was the only way for me to have access to a lot of people with different physical disabilities.

And that's what I love.

We didn't have nowhere near the same organizational level or variation. But when I lived in Chicago and I was in grad school, there was a tennis club called Midtown Tennis Club in Chicago, where one of the coaches, he was able bodied. But I went there to play tennis. I was an avid player for many years, and he said, look, do you want to I have some wheelchair tennis players that I play with. Do you want to come and hit with them? They're really good. I said, Absolutely.

I want to come hit with them. So he would actually bring high school students and me and the wheelchair players, and we would all hit and play together. And it was phenomenal. Like that experience was eye opening. I got to appreciate different how impressively good they were, like some of them would just wipe the floor with me and to be able to play with these high school players that had never experienced it either. You could see their minds and their eyes, like their bowl being just opening up to this is okay.

This is actually really cool. Like I've never experienced this before. It was phenomenal.

Yes. And basketball really led me. Wheelchair basketball really led me to a place of acceptance of my diagnosis and myself. The things that would change about myself as well and has given me a lot of support through grieving times with Ms. You lose a little bit here, you lose a little bit there. And sometimes it's this grieving process. But you go into this group of all these amazing women, and you're just having fun. And again, whether you're really good at it or not, it's just fun to have that group of women to go to.

That has absolutely been one of my favorite areas to work in, because it is a tool that allows me to interact across disabilities. And it also allows all of us to understand and to join in solidarity and other social justice movements. Our group is for anyone, regardless of whatever social categorization, because disability intersects with all of those. And so we are supporting antiracism efforts. We are supporting. You'll have to edit this a little bit, but yeah, the isms right. We are supporting the Isms. We are supporting, not the Isms are battling the Isms through sports is how I see it is that we can look at how do we address racism in this community?

Right. So now, before when we were talking about the disability community, we're looking at when I think about it, I think about here's the disability community in a circle. And then here's Ms. Here's ALS here's spinal cord, we're all split. And when I look at basketball and that community, that is a community that brings together different parts of the disability community to inform how people experience other oppressions in their life, not just disability but socioeconomic status, race, sexual orientation, gender, gender equity, all of it. And when we start talking about even if you look at gender equity, right.

If we are only addressing gender equity from a point of a white perspective, and we're not looking at a female, a black or African American female, Asian American, Pacific Island or female disabled female, there's all of these other things that are underneath this feminist movement to help bring forward equity for women. But we're missing out on key groups of this demographic when we don't include all levels of ability as well. And so through sports, we're able to do that.

This is so fascinating for multiple reasons. Number one is the ability to form these diverse communities that respect, understand are there for each other. If you look at American society today, that seems almost like singular, right. And so I'm wondering, with all this untapped potential that the disability community has in the world, do we have the perspective or a really powerful perspective of how to actually bring people together again, of how to actually appreciate all of our differences and still have something cohesive to bring to the table to move things forward?

I think we are less like I've had it from other podcast guests. I've seen it in other people. I've seen it in myself. I know I don't, right? I don't judge somebody based on their skin color. I don't judge somebody based on their gender or how they look, because I know that I've been subjugated to all of those prejudices and biases for my whole entire life, and I don't want to be that way. It doesn't make any sense to me.

Let me ask you this, but do you recognize and acknowledge race, socioeconomic status, the other social categorizations that you brought forward?

What do you mean by do I recognize my own biases, or do I recognize the differences?

So going back to what you said, you had said, what were the exact words that you use something about? Not that you don't see race or not see any of these things, but they don't change your opinion or your thoughts, right.

I really try to not prejudge anybody based on something, right? I want to understand who that person is. I want to get to know that person, or maybe I don't, but they're just passing by on the street and I don't think about it. But if I meet somebody and I'm speaking with somebody, I'm engaging with somebody in some way. I'm not going to think less of because of a difference or because of something that I don't understand.

Okay. And I think what my question was is I'm reading this book and it's called Seeing Race again. And when we don't acknowledge or recognize the fact that this individual has had a different experience or barriers in their life, different levels of oppression that are all kind of intermingled in all of that. So I think that's what I was trying to say is it's one thing for us not to judge immediately when we see right. Actually, I took an unlearn implicit bias training, which I thought was very interesting.

I had a lot of questions because I didn't understand really exactly what we were getting at, right. The implicit bias and what we see when we see someone. And so we talked a lot about we did test and quizzes and we talked a lot about stereotypes or a bias of most women are teachers or secretaries, and most men are CEOs and doctors and those types of things that we think about. Oh, gosh, I might have lost my transport. You edit this, right?

Yes. I edit this. Don't worry about it. I think what you were trying to get at correct me if I'm wrong. But I think what you were trying to get at is let's take an example. Right. If I meet somebody like a Mexican American human being who happens to be gay, right. And what I look at that person and try to understand or engage with them in such a way that their experience and what they hold is important, what they value, what their background is, what their experiences with other people do.

I see those differences. And do I approach that person from a place of empathy, or do I not acknowledge or create trauma for them or say something that could potentially be offensive, whether I mean to or not? I really try. Is that correct?

Correct. Thank you. That was very well stated.

The answer is, I'm not perfect. I'm sure that I've said things to people that they've taken the wrong way before and like, unintentionally. But I try because if a person is willing to engage with me and understand my differences because you don't see it on the camera now. But it is impossible to hide my disability in any way, shape or form. It is very apparent, very obvious. I have one arm, I wear a prosthetic. I walk very differently. I'm shorter than most people. It's impossible to hide.

So if somebody is willing to engage with me on a human level or just an open minded way, I'm more than like, I will reciprocate that back 100 fold.

Yeah. That's all we can do, right?

Yeah.

That's all we can do. I think that for a lot of years, people wanted to ignore things and pretend it didn't matter, not acknowledge the differences or acknowledge that all of our experiences are different. One of the things that I try to do in my training when we talk about access to health care, people think, oh, we use plain language and we try to talk simple and all these things. But we really don't. And one of the statements that I always make is I am white. I have a bachelor's degree, I have a master's degree, I have had access to education.

I've worked in Congress on health care reform legislation. I've worked as a hospital administrator. And if I cannot figure out what these documents are saying, and it takes me 15, 16 hours to figure out exactly what the issue was. That's not an accessible. That's not a standard, right? No, I as a white woman without the barriers should not be the standard or the point of view from which we're having this conversation. This conversation needs to be had from the point of view, from the individuals who are not getting the services that they need, who are not able to understand the documents that they get.

English is my first language. Imagine if I couldn't read anything up until a couple of years ago, when things really started, maybe five or six now, and it really started to take hold that we needed to have health care in different languages and available for patients. But if we look at disability and we look at how we have historically spoken about disability, we historically speak from a white and more women have disabilities than men currently, according to data. But we come at it from a very white perspective, without understanding that the disability is a piece of oppression Grace, there's another experience of oppression.

Now we have mental health. That's another experience of oppression. We have socioeconomic, which we've covered all of that. And so what I'm really again, and this kind of goes back to what we were talking about in basketball, and what I do in my job is that in my training is that how do we come towards people with open arms and empathy when we don't know what they've experienced leading up to that, I was teaching a training one day, and I asked something about what their perception of me was.

And I had on a business suit, and I had had a lot of fatigue that morning, but I was ready to go, and you can't tell when you look at me, most of them, the perception was that I did not know what I was talking about. I didn't have a disability that I'm another executive in here to kind of explain how things should be done without having a realistic understanding of truly what it's like to live with a disability. And so I think that we come at these conversations between the non disabled and the disabled community.

We're both coming from very different places. When I talk about recreation and we look at community recreation and accessible community recreation. One of the biggest issues that organizations look at is Ada compliance and risk and liability. So if I'm a business professional and I'm on the other side of that window when you come into the Rec Center that day and I'm thinking, oh, my gosh wheelchair user, wheelchair user or whatever it is risk and liability. And they come in. And now I'm already prickles right now this person coming in the door.

This isn't their first adaptive recreation program that they've tried. And I'm going to assume, based on my knowledge of having worked in this area, it is not the first one that has failed them. And the reason being, I'll give you an example. I had one client come to me and say we had an Ada request for them to put a giant fence around the recreation yard because their daughter is a runner. And they said, That's ridiculous. We can't do that. That's not going to happen. And I said, why?

I don't know. It just seems like it's not something that we can do. Do you know that for sure? No. Okay, well, let's look at how we approach it then, right? Maybe this woman doesn't need a fence around the whole recreation facility. All she knows is that she has struggled to get her child into whatever facility and recreational opportunities there are, and she is ready to fight for whatever that child needs. She will fight you. So now you're both coming to the fight like fits up, right?

You're ready to go? Whereas I said, what about staying to that consumer? Okay. Let's talk about why you want a fence. What are you trying to accomplish? I know your daughter is a runner, and that has to make you very stressed out. I can't imagine thinking that all day long, I'm sitting somewhere else that my daughter's in a program where she could run be injured. They might not find her there's cognitive issues. So let's get to the heart of what do you actually need, then you open up this conversation.

Okay. Now I understand what you need may not be offense. I have no idea. But you know what, Gustavo? I'm going to find out. I'm going to ask my manager. I'm going to let them know your concerns, and I'm going to get back to you. I would guarantee you that we would have less litigation and more opportunity for our communities to come together and understand both of our fears, both of where we're coming from and what our experiences have been because I also know on that Rec side that staff members gotten it a few times because there is frustration that people are coming in fist up.

I'm fighting for what I need, you know? And so I think that in the community that we've built, it's a very good opportunity for us to not come in with those festivals to come in just as we are.

I think that's really that deserves a lot of praise. I think that's an incredible approach. I'm wondering if that idea of what you said of seeing a person or thinking of a person with a disability as a liability. First and foremost, if that attitude also doesn't get translated into the workplace. If it doesn't get translated into the health care system, I'm imagining that it's there for all of those things. As a former hospital administrator, which is a really interesting perspective, how did you see that play out in the health care system, in the health care system, in the hospitals?

I know that when I've gone to doctor's offices past 18 years old, I don't even want to say how it is because it's rarely a good experience. Right. And I go to every doctor's appointment with a defensive mind state, and they're not going to know they're not going to care. They're going to try to push me off to someplace else, or I'm getting fear instead of help. I go into physical therapy when I have pain, and they're the exact opposite. There's no fear. There's no sense of it's a welcoming place.

They're amazing people. They help me. They dig in, they feel around there and they work with it. So why is that?

Oh, gosh, Gustavo. I could talk about so many things here. I'm going to go back to and I'm going to use my own personal experiences. I was diagnosed with superior semicircular canal dehiscence, which is acronym is SSCD. It's a very rare inner ear disease disorder. One of my very first symptoms in 2010, before I even started doing any testing for Ms or autoimmune diseases was my ear. I got off of a plane and I could not hear out of my left ear. It just wouldn't pop, and it didn't pop for ten years.

That was one of my first complaints. And so as they started looking at what's going on neurologically for her, they did an MRI, and they were very much set on. It's a multiple sclerosis diagnosis. We see the lesions in the brain and on the spinal cord, and that's what it is. And this ear issue went to the wayside, and it kind of stayed by the wayside for a couple of years when I was recovering from the toxic mold as well. But after that, the ears being resurfaced.

And now I had my Ms back to a baseline. I guess I could say where it was a healthy baseline. I would know what to expect with fluctuations. But this ear was still a problem. And when I say this ear was a problem, it's not a story that I shared often because I had multiple providers tell me that I needed to seek mental health services, that I belonged in a mental health institution for schizophrenia or bipolar disease or disorder. And what was happening for me is that I could hear my internal organs moving.

So one of the very first symptoms I had was the fullness of this left ear and no hearing out of this left ear. And then it went into my eyes. And so I would start to look peripherally with my eyes, and I could hear them moving in the eyeball socket. And I'm saying that the muscles around it are grinding around the eye. And you're listening to this as you're trying to also see what you're seeing, keep your anxiety low, all these things, but my body and our bodies are amazing.

My body actually started. I would close my eyes, turn, and then reopen my eyes. I didn't even know I was doing it until after, and I'll share that with you. But all of these adjustments, the one I could also hear my neck muscles, which some people can hear a little bit of that. But this was more of a grinding around the spinal cord. I began to walk on the balls of my feet because if my heel touched the ground, I could hear the heel connect with the ground all the way up into my head, into my ears.

And the worst one for me was I could hear my heart beating in my left ear, and it started out just we can usually hear a little bit of our heartbeat right when we lay down and you hear a little bit and then it goes away. This was something that increasingly got louder and worse. And over the years, I began to really isolate myself and not talk to people except the people that were really close to me and understood that if I got really excited, my ear was going to start getting really red, my whole face would flush.

I would get nauseous. I would get a migraine, and I would be very sick. And it was all because I could hear my heartbeat in my left ear. And so now imagine trying to function in the world where you can't move your head without hearing your eyeballs. You can't engage in a conversation. And I think you can tell I'm a very expressive thank you and passionate person. And for me, this was devastating to me. I could function through having clients because I was working from home.

I really backed out of General Society of work. I was a hospital administrator. I oversaw chapter services and healthcare access for the Ms Society for Southern California and Nevada. And now I needed a break from life because I couldn't function on a day to day basis. And in addition to that, I couldn't talk to anybody about it because most people thought I was making it up, that I needed more mental health help. And so this continued for eight years until fall of 2018, when I don't know what I searched that day, but I searched something or if they had just added it to the Internet.

But it came up what I was experiencing. And I said, okay, I know this is what it is. I know what it is. And I went to my neurologist and my neurologist said, That's absolutely not what it is. You need to stay off of WebMD and you need to just get some mental health. You have not really come to terms with the fact that you have this Ms diagnosis, and I was just in tears. And this goes back to what I'm talking about, the fact that if you look at me, if you hold me as an example of who should be able to access health care, and when I go in that they tell me to get off of WebMD and I cry.

Now imagine. And this is what breaks my heart, because I know that I will get what I need because I won't stop until I do. What I don't know is that everyone else will get what they need. And that's what really, really drives me in the work that I do around health care, because I should not be the standard that anyone is held to. The standard for accessible language and everything should be how people need to get information and communication in their own communities in the best way that they can.

And so you've got this system. And I said to my neurologist, I said, Listen, and I'm a former hospital administrator. I have had Ms for eight years. I said, I am not trying to do your job, I promise you. But I said, I know that if you do a CT scan of my temporal lobe, not a regular MRI scan of my brain, that you will see if I do or do not have this disease that I'm telling you that I have. And she refused. Then she gasped at me and told me that you would be able to see the CT or the temporal lobe in an MRI, which I already know.

You can't. I have a health care background. I left crying. I let her tell me again when she showed me my MRI that I needed to be back in a mental health facility seven months later. That was April of 2019, and there were three months where I basically didn't function. I was convinced that I would live this way with hearing my heartbeat. And.

That'S okay. Please take your time.

No one can live like that.

I work with acoustics a lot, and I've never been in one. But this is what I've heard people describe it as. And I know that this is different for you, but I'm trying to connect and relate is I appreciate it when you go into what's called an anacoic Chamber, which they do, they study loudspeakers and they study how we perceive sound in there. Human beings can only comfortably be in there for, like, half an hour, 20 minutes. Some people five minutes because they start to hear their heartbeat.

They start to hear the things that are going on inside of their body because it's so dead quiet that we start to pick up on those things, and people start to feel physically uncomfortable and they have to leave again. It's such an unfortunate experience to see. Like these are health care providers. These are the people that are supposed to know or at least do the research and be open minded and try to help. And I know that there's great physicians out there and there's great people in the health care system.

Right. But that doesn't reduce the trauma and the difficulty that you went through and that other people go through every day absolutely.

Took me three months. And finally, my husband said, Just go around, go around the neurologist. And I said, I just don't know if I have that fight left in me. And he said, you do. You can do it. And I went around my neurologist and UCLA neurosurgery performs amazing surgeries. But let me tell you, they did what superior semicircular canal dehiscence is. And this is what they explained to me is that there's basically in my ear canal, a third window. So we have two windows in our superior semicircular canal.

And those two windows allow air, and they allow sound to go in. And they're very much connected to the Eustachian tube. And so what was happening for me is that I have a third window in each of my ears. So I have bilateral in each of my ears that allows for there to be no barrier between the brain fluid and the ear canal. So my organs in the same way that the brain receives the messages and hears the internal bodily organs moving. And I tell you what I begged.

I went to UCLA neurosurgery, and they said, you have to have a diagnosis. And I said, Listen, and I was bawling. I said, if you can tell me where to get a diagnosis, I would have done it nine years ago at this point, because now we're nine years in. And she said, oh, yeah, I'm so sorry. And I just wouldn't get off the phone. I just said, I know this is what I have. This is what I'm experiencing. And every time she said, no, I just came back with, can you please talk to someone?

And she ended up getting one of their assistance. And this was a Thursday that I called. I had an appointment at UCLA the next Monday. They didn't have to do any tests. They diagnosed me on the spot, just given all of my experiences and background. And she put her hand on my knee. And I will never forget this. She said, we believe you and we're going to fix it. And we're going to help you. And that, to me, was, oh, my gosh, I may actually have a quality of life again.

I may actually be able to participate in my life. And I think that when we talk about the structures and then the systems in place, there is a power differential. And there's a thought that I've gone to school all these years in medical school, and I obviously absolutely respect that degree. But providers don't live in our bodies. And so there needs to be an approach in health care where we are coming alongside the patient again, that could have been a very simple conversation. You know what, Sarah?

I really don't think that's what you're suffering from. But let's see if your insurance will cover a CT scan of your temporal lobe and let's go from there.

What does it hurt or what does it hurt? You're right there in La. What does it hurt to say? Hey, look, these people at UCLA know their stuff. They have their specialists in a different place. Why don't we go over there and have you speak to them? I know about them. Right? Let's go explore this clearly. Just give you the benefit of the doubt. I haven't had the experience to that degree that you have. But I've had a doctor tell me the pain you're feeling like excruciating pain that you're feeling in your right hip is impossible because your right hip is fused at the bone.

It's like it's your knee, right? It can't be your hip. I'm just like.

It'S my body.

It's my body. So all the tissues and muscles and things that are in skin that's all around there, like that's all like, dead. All you have to do is touch it and feel it. And that's what my therapist did. You have something here. It's the same nonsense.

And I have to tell you, Gustavo, you and I are two of hundreds of thousands of people with similar stories. And it again goes back to the systems and the structures. And it goes back to education of medical providers. It goes back to education of therapist ptrtot. These students have 1 hour, including medical students, 1 hour of curriculum in most situations that are focused on disability, that's not enough to understand a community. The best way to understand the disability community as a whole, as opposed to like what we think or what we currently as a society called the disability community is to actually have conversations, to actually sit down and start talking.

We were looking at Guinness Beer commercial, and it's a wheelchair basketball Guinness beer commercial that came out years ago, and there are five of us on the phone, two non disabled, three disabled spinal cord injury, Ms and amputation. All three of us with disabilities had a totally different take on that commercial, and the other two individuals without disabilities had a totally different take on that. And so it's the same as any other community. We go around saying, well, this community or that community. Those are the loudest voices.

Those are the voices that have maybe money behind it or prestige behind it or privilege behind it. You need to start going down to grassroots basketball games where we're in communities where there are so many individuals that have not had opportunities for education, for good health care, for opportunities for recreation and physical activity and socializing. I think there's this expectation that, well, if you can't interact in our world as the world is built, then you should just go home and stay there. And that's a very, very hard message in COVID.

I was reading someone's quote the other day and it said, I'm not going to take care of other people. If you're scared, go home in your house and you can stay there for 30 years.

That's awful.

It's not empathy. It's not compassion. And so going back to your question originally was this community of women together, because we lead from empathy, we lead from a different place, that we are in a world, and it's not necessarily our physical or mental health disabilities. We are in a world that is structured. It's a capitalistic structure. Your value and your self worth are directly tied to your production in this country. And if you cannot produce at that level or in the time frame when they would like you to produce it, right.

If that's Monday through Friday, it's got to be done eight to five.

Or you're not even given the opportunity to see what you can produce, and when you're not even considered for that opportunity, you're not given the chance whatsoever. Right. I agree with that on all points. I was watching CNBC the other day, and there was some person on we're not going to name names, but they were saying, oh, there's more inflation. And the way that the companies are going to have to combat this inflation is by becoming even more efficient and more productive. And I just shook my head and say, how many times are we going to keep paying for the mistakes of other people, mistakes that are made without our input, outside of our control?

And how much more productivity can you squeeze out of the American worker today? And why is that always the value?

I agree with you 100% and a lot of times when we look at even if you go back to requesting an Ada accommodation, it's being as you're taking away time from the company because you can't put in those exact hours or exactly how they would like you to do that job. It doesn't mean that you can't do it. It means that there needs to be a few adjustments made, but there's a misunderstanding of how we do a reasonable accommodation as well. And I'll give you an example.

I was saying to one of my girlfriends the other day I have always wanted to run for Congress. That is my ultimate. I would love to be in politics. However, I don't know if you're familiar with the spoon theory.

I'm not.

Okay. So the spoon theory says that maybe someone without Ms would have twelve spoons in the day. Right. And I have twelve spoons in the day, but it takes me two spoons of energy to just take a shower and then I have to get ready for the day. And that's another spoon. Well, you haven't used any of your spoons yet, so you still have twelve. I'm down to nine, and I haven't even left my house. And so it's looking at, if we look at if I as a person with multiple sclerosis and given the energy and time limitations that I have in five days compared to seven days, how could I ever be a member of Congress when they do voting overnight when they call people back in at 02:00 a.m. How can I go back in?

And I'm only using myself? I'm saying obviously, for a bigger picture, there is not an opportunity to say, hey, let's change the structure of this so that we can actually have people at the table that need to be at the table. And that's exactly what you're saying. It's based on that production and not what the needs are, because if we could maybe in this situation say, okay, is the accommodation that congressionally, we allow her to have a person with her that sits in for her and she is in from home where she just comes in and there is at home.

But she's got an in person is the accommodation that we end meetings at 03:00 p.m.. But nobody wants to talk about that.

Is the accommodation that the government actually runs reasonably efficiently, not even nowhere near a business, but we could just get our votes in by 05:00 p.m.. Is that too?

It's like managing your household? I don't know. I don't know. But yes, that's exactly what it is. And so a lot of times we'll just sit and have conversations and I'll be like, what would an accommodation be for me if I wanted to do that? Or, hey, what would it be an accommodation for you if you wanted to do that? Because it's even interesting for us, because sometimes is there even an accommodation that can be made if that was a goal of mine, and I did want to work in Congress, how would that even happen?

You're looking at members of Congress who are wheelchair users who don't have an accessible building to even go into to have a meeting. So I don't know. I mean, there's so many layers to that, but it's system upon system, and it goes back to is it our medical diagnosis or is it the structure in which we live that disables us? And I would say that it is the lack of accessibility and the structure and capitalistic structure, especially that we live in that disables us. It is systems that are meant to support one another healthcare system that's meant to support a patient.

The health care provider is stuck in between academia and what they've learned on that and what they've signed in a contract and then the health care system, you know. So they're they're battling a health care system as well. So if they're battling and we're battling, there's never going to be any movement.

I agree with you, but I'm a both and kind of thinker so. I think there's both. But I would say with the way things are structured now, it's probably like at least 80 20 in your direction. But right, there's some element of I may not have the same energy or at different points in my life. I may not have the ability to have that output level that I did before, and that may change and fluctuate over time. But what am I bringing to the table? What are you bringing to the table that we can look at?

That goes beyond beyond that. Right.

Right.

Your ability to problem solve, your ability to empathize, your ability to bring in all of your experiences as a hospital and administrator, as somebody with a disability, as somebody who's consulting for people. Now, those are all enormously valuable skills that I would make the argument that 2 hours of your time every day is of enormous value, and we should be utilizing your potential more my potential more in the society. That's my biggest. That's what I want to change is we are untapped human potential. Right. And there is so much more that we're capable of giving doing that.

We're not even remotely tapping into that. It's just really sad.

No, it's really sad we're not tapping into any of that any of those opportunities.

So how do you think you're bringing how would you like to see that change start to happen? And where do you think you're seeing it right now with the work that you're doing? Recognition of people of seeing people's potential a little bit better of educating the nondisabled community in your work to say, hey, we can be doing these things better.

I had a mentor of mine say to me the other day, where is like warm, soft, Sarah, sometimes when I come in really hard about the systems and all that, but to put a very positive light on it, there are more organizations that are looking at. There's an organization called Chronically Capable, and they have a website where individuals with chronic illnesses and diseases can have a different schedule and structure for their work. And that's about all I'm going to say, because quite honestly, what I feel is happening is that in organizations that are disability focused, we don't have people with those disabilities running those organizations.

So we have a lot of nonprofits in this country that are run by people who live in proximity to that disability and proximity is very different than personal experience. So to say that you're a disability focused organization, but not to employ or to have events that bring together these groups of individuals. I would really question if you're a disability focused organization now, I have friends with many experiences in disability focused organizations that did not feel that they were supported with their disability. So I think we first need to establish the fact that even organizations that say that this is what they're doing, and this is what they're committed to on a daily basis are not having the conversations necessary with the individuals that live with this injury disease, disability, whatever it may be.

And I don't mean a conversation here and there. I mean, there needs to be somebody on your board of directors. There needs to be twelve somebody on your board of directors. That should be a disability led organization. Just like with our women's wheelchair basketball team. We are the only women's wheelchair basketball team in the state of California. As I stated before, this team will always be female disability led. That is the commitment to the women. And that should be our commitment to everyone in this country who lives with a disability that you belong at the table when decisions are being made about your health specifically and what programs you want, what research we should be doing, we want to hear your voice.

And instead you go back to the Nasdaq. Just put out the inclusion comments and regulations or requirements. I can't remember the word around board. Inclusion didn't include disability.

I saw that that was like.

Embarrassing, embarrassing, but not surprising, right? Were you surprised? No.

Because if you look at Corporate America today, there are some good things happening with the diversity, inclusion, equity space, and virtually none of that conversation revolves around disability, none of it.

And I've had quite a few conversations with high level executives in very different areas of the country and very different areas of work, I guess, like location, but also like areas of work. And I can't tell you how many times I've been told that disability is not something that people want to hear about, yet it's race, gender, sexual orientation, things like that. And what I've said to all of them is every single one of these people has all of that. I said, so if you're addressing race and you're not addressing mental health and physical health, and you're not addressing sexual orientation, gender equity, all of that.

You're not addressing inclusion because you can't address one piece of me without understanding all of the pieces of me that have made me who I am, and that's even more so for marginalized communities that have faced much more barriers, many more barriers than I have faced. So unless we start to look at our inclusion programs as something that we actually want to do, as opposed to a push for PR or a push for better recognition and more money and more clients and followers, we will never have inclusion.

We will never have equity. A year ago, somebody asked me, Why do you say equity? It should be equality. And I said, Because we all don't need the same thing. We all need something different. That brings us all up to an even playing field. But that's not necessarily the same thing. If we don't start looking at how all of these systems of oppression, financial, all of them have impacted people's lives and how that impacts how they are as a person today, we won't have inclusion, because if we continue to give lip service to the fact that yes.

Great. Bring your whole self to work. But then I go into my manager and I say, hey, you know what? I can hear my heart beating. I can hear my heart beating in my left ear. And they think that I should be in a mental health facility. Done. Where is that conversation going to go? And it's not about just education of the C suite and the leadership. It's about middle management education on how do I operate from an abundance and we can have a win win here.

We can all have a win win. We may not get exactly what we want, but we're going to get most of what we want. And the other person is too, as opposed to I really want to hold on to what I have. And I don't want to share that.

Yeah. The scarcity mentality of it. There's never enough to go around and one person wins and one person loses. Yes.

And I just refuse to live that way. And in my work, I've learned a lot about intersectionality and the framework of how that should work and how it should be applied. Now, do I think I can apply it perfectly every time? No. Because intersectionality says that all of these oppressions are equally as difficult as the other one. Right. If not one is more difficult and this oppression is less difficult. They are all difficult. So when we apply intersectionality, we're not highlighting just disability. Right. We are looking at the entire person.

And so as I try to become more aware of how we actually practice and implement that, I think it's really important that that goes back to a cross movement solidarity. Right. And that goes back to basic of.

Two questions for you. And then I know we've taken up a lot of your time, but if you're okay with a couple more questions, the first one is I don't know if you read Judy Humans book. Yeah, but I thought it was a great book, but something that caught my attention that I didn't realize is that idea of what you talked about when they were doing that fit in. They actually had the support of a bunch of different organizations. Right. The Black Panthers helped out. I forgot everybody else, but it extended way beyond what you would consider the disability community and way beyond.

Right. And we need that level of solidarity. We need that level of let's make it better for as many people as we can.

Absolutely.

Do you also think that is the Paralympics, right? As this. It is growing. We're seeing it on TV now. I've been watching the Olympics all my life. This is the first time I've seen the coverage of the Paralympics be as predominant, and it's not as well covered as the Olympics yet, but they're taking some huge strides forward.

Absolutely huge.

Right. Can we model what they're doing and study what they're doing and try to start applying that into other areas.

Well, okay. Yes and no, because if you look at I don't know if you saw the opening ceremony and the closing ceremony.

I saw the opening, not the closing.

Okay. So one of my concerns with that was that my understanding was that Tokyo or the parallel committee allowed for anyone who wanted to come in and be a dancer to come in and dance at this event of the opening ceremony. In the closing ceremony, I thought we saw for people to recognize disability, sometimes they have to see it has to be visible, which is something that I obviously really struggle with. But even as I was watching that as much as I know about disability and understand about the community, I would have liked to have seen more visible impairments because these are physical disabilities.

These athletes all have a physical disability. And so I would have liked to see more representation there. My other concern was there were some in some of the sports they had great sports casters where they were talking about, for women's wheelchair basketball. There was this gentleman and this woman that were incredible. They talked about the rules of the game. When you roll, when you can pick up the ball, the 3 seconds, how you throw it in. And they had so much knowledge. I learned a lot, even as I was speaking to them, hearing them.

And then you would go to another section where didn't really explain why certain athletes were there all these things. And so what I do think is that as the visibility grows, which it has, we also have a responsibility to educate so that it doesn't become like inspiration porn, where we're just saying, oh, these athletes, they're great because you got out of bed today and went and played basketball. Okay. Yeah. I got out of bed today and I went outside and played basketball, too. That's not something to be celebrated.

What is to be celebrated is the athleticism and the prowess of these people to just their athletes. They're elite athletes and should be recognized as such. And so I do think that the Paralympic Games has done a great job of getting it more on a national scale. I think that needs to be followed up with good education about what each of the Paris sports are, as we're watching them, for visual learners, for audio learners, for whatever that may be, we have to have a consistent message of what these are, why they're important, who these athletes are.

What T six spinal cord injury, they're talking T 32 and 32s and all of these classifications that if I hadn't been involved in adaptive sports, I would have had no idea what they were talking about. And some of them I still had to look up. But if we could start to educate people, I think then we use this platform that we now have. But then we also raise the awareness and the opportunities for allyship and advocacy. When we start to explain the importance of these sports, the importance of the athletes and what this provides in grassroots communities.

We have teams in Compton, we have teams in Watts. We have teams in different areas that start grassroots, no funding. And these teams, these people grow into these just incredible Paralympic athletes.

Let's have more broadcasters who have actually played the sports, too. Let's highlight the coaches who some of them are non disabled. Some of them are right. And how did they adapt? How did they adapt? How did they learn the sport? How did they understand how to help these athletes become better at what they're doing?

Because even we were saying, like, okay, if I'm on the court playing, you can't yell at me because first of all, I'm going to forget what you just said. Second of all, you just jacked my anxiety up through the roof, because now I can't remember what you said. And now I'm like, what did he say? And I'm trying to roll down the court. But you're working with athletes that have cognitive issues, right? If I get overstimulated, there are times I would get overstimulated on the court, and I would just start laughing because I was so overwhelmed with everything going around me.

I was like, I can't play right now. And so even adjusting, how do we adjust our coaching to understand that Sarah can't feel her fingers today? Don't throw her the ball, she'll only be able to do defense or so, and so can't be in there. Whatever it may be, it's all an adjustment. And so I think that it's really important how we explain how these athletes make these adjustments. I think I would have been really nice to understand the impact on athletes when they weren't able to bring their usual caregivers and their usual team for support, because I think that even for a non disabled athlete, that would be very, extremely difficult, mental wise, because you prepare mentally.

And so now you have these athletes with disabilities who already have all these other barriers, but now their caregiver or their other person that comes with them to help them is not there. So, yes. Back to your question. Yes. I think they've done a great job of raising the awareness and the visibility. I think that we have a responsibility, and I don't even say opportunity. I believe we have a responsibility to educate people on what these sports are and everything else that I just shared. But it's not an opportunity.

It's a responsibility. If this is the area that we want to practice in and that we want to bring visibility to and we want to advocate for, we can't expect that everyone else has the same understanding of disability that we have. We have to meet people where they are and we have to start educating people where they are because it's going to be a long process. It's not going to be ten years. It's going to be a couple more decades.

Yeah, but you're right. We have a responsibility. And if we accept that, then the only thing I feel like I can control is can I leave things a little bit better than I found them? Right. But that's still a responsibility to accept, because I don't have to do that. I can live more selfishly. I can go do different things. But, yes, I have accepted that responsibility. And I want to leave things a little bit better than I found them.

And you just brought up a really good point, because if my friend Molly were here with me, she would say, we also can't expect that everyone has the energy and the ability and the opportunity to take on that responsibility and to move it forward. And so I think for me personally, it's also more of a personal drive that I feel it is my responsibility to give back to help others that have had more difficult situations than I've had in health care, more difficult situations than I've had.

I can only imagine if I couldn't live that way anymore, how many other people suffer in silence like that. But there also can't be the expectation that everyone can come along and do this work. But if we choose to do this work, then I do think we have a responsibility to educate to the best of our ability and to leave everything just a little bit better than we found it just a little bit.

Absolutely. We overestimate what we can achieve in a short period of time, and we underestimate what we can do in a long period of time.

Absolutely. I remember when I first started working in politics and people were like, oh, it's incremental changes. And I was like, what? No, we were talking about incremental changes. It was like a whole thing. We studied in school, and I was like, It's too slow. They're like little incremental. Anyway, we'll talk all about that in our next one.

Indeed. Is there anything else that I missed that you would like to talk about, say, tell the listeners. And then I'd like to also find out, where can people connect with you, get in touch, hire you, work with you, et cetera.

What do I want to leave with people? I kind of want to go back to what I said before that I want to leave with people is that if we can enter into each interaction that we have or at least try, I am not perfect. I do not do this all the time. I fail at this often, but I really try hard when I go into a situation or an experience that I am completely open to whatever that experience will be and understanding that we both have different barriers that we face, different experiences that we face.

But there is an opportunity for us to change the world when we start having conversations like this and we start talking about what we need, and we start talking about what we want the world to look like and a lot of it for me. If I think about what is I ask myself this all the time, what is our purpose, if we truly think about it, and if I truly think about it and I do, my purpose can't have been to be on this Earth, to be in a self serving way.

The only way that I can make sense of why I even exist as a human being is for the purpose of helping other people and being kind to other people and otherwise, what's the point, enjoying life and we don't get to take it with us. We don't get to do any of that. But we get to leave things with people and we can do that. And I think that for me, that's just my purpose is to hopefully whether it be through one conversation or two. I have a lot of conversations where people are newly diagnosed with Ms and you want to have that camaraderie and that connection with someone.

And so I guess I would say to people, be open to what you may be able to offer someone that's very different than you and what they may be able to offer you in your life and how that may help your life to flourish. And it's someone that you didn't think about or anything like that. But now this person has changed. Your perspective, has brought a different idea, has helped you flourish in a different way. And so I would say, be open, try to enter conversations without an agenda without a preconceived notion, acknowledge and recognize.

Yes, we both have different barriers that brought us here today and experiences the identities that have brought us here today. But we're going to work together and move forward, and we can learn from one another. And so that's what I would say in the simplest of terms.

I've never heard it said that way. And that really hit home with me. We can't take things with us, but we can leave things for people, right. We can give we can contribute. I think that's beautiful.

Thank you. And then yes, I know you asked me.

How can people work with you? How can people connect with you?

Yes. My website is eylevel. Orgs, and that is just eye level. Everything that we talk about is we should be talking to people at eye level and understanding where they're coming from. And then I'm on LinkedIn. I'm also on Facebook. Eye Level works and Instagram most of the works, although some are a little bit different, but I think you'll be good. I think the website is a good location to start with the website's.

Great. You're extremely active on LinkedIn. That's how we met.

Extremely active.

And so I encourage everybody to follow, share, meet with you. You're incredible. I'm so happy that we had this conversation. But I'm thrilled that we connected as human beings. So thank you so much.

I am, too. And can I give one shameless plug?

Go for it, please.

If there are any women with physical disabilities listening to this conversation today, and you are interested in playing on a women's wheelchair basketball team or a Coed wheelchair basketball team or any recreational adaptive sports at all, I just want to encourage you to take that step. Have that faith in yourself that although you may not want to become the next Paralympian, that's okay. This could be a really great community of support and empowerment and fun and family for you. So I would encourage all young women, older women alike.

Men included. Our team is for women, but young men as well and adult men. It's just an amazing way to build a community for yourself as you move through life with your disability.

Awesome. Thank you, Sarah.

Thank you so much. I really enjoyed it.

Me too. Until the next one until the next one.

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• Eye Level Works: www.eyelevel.works

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