Ep. 79 - What Academia Gets Wrong About Disability—And How to Fix It (with Dr. Stephanie Cawthon)

What if everything you thought you knew about disability… missed the point?

In this deeply powerful episode, I’m joined by Dr. Stephanie Cawthon—educational psychologist, author, and founder of the National Disability Center for Student Success at UT Austin. Stephanie is a force of nature when it comes to challenging the status quo in higher ed and beyond.

We dive into her personal journey as a Deaf scholar navigating academia, why she chose to self-publish her latest book Disability Is Human, and the everyday moments where ableism sneaks into our systems—and our minds.

In this episode, you’ll hear:

• How growing up Deaf shaped Stephanie’s mission—and her research.
• The story behind her bold decision to self-publish (and how she did it in just one year!).
• Real-life examples of ableism in higher ed that will stop you in your tracks.
• What healthcare pros, HR teams, and university staff are learning from Disability Is Human.
• Her smart and beautiful take on branding, building community, and showing up authentically online.

Whether you're in education, leadership, healthcare—or just want to be a better ally—this conversation is for you.

Transcript

Leslie:

Today, I am so happy to welcome Dr. Stephanie Cawthon onto Your Words Unleashed podcast. Here's a bit about her. Stephanie W. Cawthon, PhD, is an author, educational psychologist, and researcher who is the Catherine May Parker Professor in Education at the University of Texas at Austin in the Department of Educational Psychology with a courtesy appointment in special education. She is an internationally renowned expert for her research that examines the multiple factors that affect how disabled people succeed in classrooms, at workplaces, and throughout their lives. She investigates issues of equity and access in education, explores accommodations and accessible learning and work environments, and challenges systemic standards that are holding people back.

In 2023, Stephanie founded the National Disability Center for Student Success. She's been awarded more than $50 million in federal and other grants for her groundbreaking research. And her most recent book, Disability is Human: The Vital Power of Disability in Everyday Life, was published in 2024. (Wow.) Together with the official workbook, this book provides real-world examples, personal experiences, and actionable tips on how to design your world to be more accessible. So Stephanie and I got to know each other on LinkedIn, where over the past few years, I've watched her process of writing this book, which is for a broader audience, and the amazing job she's doing promoting it as well, which is something I think that all authors can learn from.

Furthermore, in this current political climate, I think it's more important than ever to be raising more awareness about issues of disability and access in the world of higher ed and beyond, which is why I wanted to have her on today. So it is so nice to have Stephanie here, and just a note that Stephanie is here with me, and she is signing, and you will be hearing the voice of the ASL interpreter. So let's dive into the questions. So Stephanie, I like to ask everybody, can you describe your path through academia and a bit about your scholarly research?

Stephanie (via Interpreter):

Sure. So my path is a lifelong journey. And it started from when I was a kid growing up. Both of my parents were teachers. Both were faculty in higher education settings, department chairs, deans, administrators. So a lot of the culture in our home was really applicable to college and higher ed settings. So I knew at some level that my future would include being a teacher and probably in higher ed at a college or university. So from there, then research was fascinating to me. My first love is language and language development in general with children, language acquisition.

And so my first aha moment was when I went to England. I went to study abroad at Oxford University. I was with someone who said you really need to take a deep dive more in language with children who are not typically developing and their language acquisition. And so I thought, Deaf and hard of hearing kiddos just like me. I knew my own history was a little bit different in terms of language development as well. I didn't speak early on. I went to a special school. I was separated from everyone else. I was then mainstreamed, yes, but when I went there, I sat in the front of the room.

I did a whole lot of reading. I kept my eyes glued to a teacher. That is how I accessed education. So most of my interactions, even as a child, were with adults, not with peers or friends my age. You know, they were back there joking and having fun, but it was back behind my head where I couldn't hear nor see them because I was seated in the front row to gain access to the content and what the teacher, the adult in the room, was saying. So those two coupled really led me to my research and academia interests about the development of children and language acquisition in those early years.

That's a lifelong thing for me as well. But then, as it happens, common development goals or, you know, things that we all know, things that are happening for typically developing kiddos, things change along the way. Specifically with disabilities and how we understand them, how they impact academic achievements, and how work opportunities may be impacted. social lives, friendships. And so all of these things really apply to the same concept for me all the way through graduate school and early in my PhD work. And even still to this day, I'm here, I've been at the University of Texas in Austin almost 20 years.

And I still am in that world, those core ideas, and I'm still taking a deep dive into those issues, sometimes in different ways than I originally sought after, but it's still an ongoing bit of work that I do and support others in their efforts in the same vein. So that's a little bit about my journey.

Leslie:

Awesome. You know, just to put everyone on the same page, I'm really curious to know how you define ableism and what you think are some key ways that ableism occurs in the realm of higher ed.

Stephanie (via Interpreter):

You know, I thought about that definition quite a bit. Ableism to me is the attitudes, behaviors, and thoughts when considering disabled people as less than or othered. That is ableism. It's an othering and assumptions of things connected to disability. And then typically it has a negative connotation. Sometimes it's the system, and sometimes it's not; it's not always.

Leslie:

And then can you talk a little bit about ableism in higher ed as you've either studied it or experienced it or know other people have experienced it?

Stephanie (via Interpreter):

Yeah. It's most often in the language that they use. One student that I have spoke about her experience within a chemistry lab. The professor said to her, you can't sit on one of those high stools or a high chair. It's a three-hour lab, but no, you may not sit. And she said, well, I have MS and I can't stand for a three-hour period. And so the professor responded to her and said, well, in science, you have to stand. We're literally talking about a chair. We're not talking about extended time or any accommodation that would impact anyone else.

It was literally about a place for her to be seated comfortably for three hours or within that three-hour time. And so for me, that's a standout example that we see. It's pretty prevalent. And people don't even realize how much of an impact that one person has. I have a whole host of experiences myself. One example that I often give it's in the book, but when I got here, the person on top, the administrator said, maybe consider not studying deaf people or disabled people. You know, people don't really care about that. You're never going to get any funding for that.

Maybe change your topic. And so when I started to be successful in receiving funding and my projects were going well, and I was able to recruit students, it was like I never got an I'm sorry. I never got an apology from that person. I didn't think I would, but just that comment for them was nothing. But to me, it meant everything. So that's one thing I noticed going back to ableism. Comments, behaviors, it might be short, it might be small, it might seem insignificant to the person doing or saying it or to the office with that policy, but to the person with a disability, it's literally everything.

It shapes how you view yourself, how you see yourself, how you move throughout the world. because it impacts what you think your ability is. So I try to support people and advocate for people within academia, on campus, off campus, people with disabilities. I want them to realize they're not alone. and they're not doing it alone. In addition to that, people without disabilities. I like to speak with them, people in power, people who have power, to understand that language matters, words matter, and the impact that that has on people in their lives.

Leslie:

No, absolutely. And good on you for not changing your research trajectory when someone in an incredible position of power was recommending that you do so. So how did you resist the urge to capitulate?

Stephanie (via Interpreter):

Well, that's interesting. So we have standards for promotion in higher ed. You know, that's pretty well known. You need to be published a certain number of articles and what have you. There's a criteria. So instead of me saying, okay, I'm going to meet the standards. Instead, I tripled it. I tripled the work. I said, I'm going to prove you wrong to myself. You know, I'm going to triple that. And honestly, I worked to exhaustion to achieve it. I'm still to this day doing that at that level. I'm not saying I'm proud of that, that I've worked to exhaustion, but that was my method.

That was my approach. is That is where my value lies. That is what I'm doing. Not you and your standards and the content. So I understand that I probably did a lot of damage to myself with that. So that piece I'm not proud of, but that is how I approached getting told that so early on in my career.

Leslie:

Yeah, no, I hear you. And I hear that story as well from so many professors of color, particularly Black women, who are like, at least twice as much work, right? Twice as much to show so they can continue on, right? So I fully understand that approach. And it's also, of course, really, really hard on your body and your soul. And now you've written something that's really for a much wider audience. So let's talk about Disability is Human. So first of all, what inspired you to write this book? Maybe just talk a little bit about what it is, how you kind of structured it, and that sort of thing.

Stephanie (via Interpreter):

So the inspiration came from three different things. First of all, personally, I'm now over 50 and I feel like I need to put out something authentic, no longer about publications that are being counted, but something real for me. This book is not part of my academic CV. It's not on there anywhere. I didn't do it for quote unquote credit in that way. And I knew that. I self-published it. I did it all on my own. And this one was for me. I had an opportunity to be able to do that. And I took it to finally have a way and to have the grace to be able to do that.

So one reason for me, I needed that. I needed purpose, and I needed that opportunity to share things that were not within that box of academia and limited to that space. I don't have time for peer reviews right now. I just, I don't, I'm not there. And it's a two or three-year process. I'm not there right now.

And so this was more of an immediate, I need to do it now. Let's get it out now. And I wanted to be able to publish that and get it out and have access to the book. And second of all, I teach a course here at the university called the culture of disability. I teach it every year in the fall. And I have over 130 students take that course annually. And they come from all across campus, all the different majors, law school, medical school, health and sciences, communication, business, natural sciences, literally everything. Not so much educational, which I find interesting, but that's fine.

They come from everywhere. And so those experiences that I have with those students, they are learning so much, so many stories about what young people are learning. They are learning and I'm learning from them. And so I felt like I had a great opportunity to teach through this book, what people in my course are learning, and what their takeaways are. And I wanted to make that experience available to other people. I found what was working in my course, and that structure was great, and I could put it in the book. So the structure of the book, as I found, as with, even when I present publicly, do public speaking, teaching, giving three key ideas is usually pretty important.

These are the things that people want to know. How do we do access? What is it and how do we do it? Is there a list? What do we do? I'm like, ah, gotcha. Let's take a couple of steps back. What is disability? What does it mean? Who are the people? What are the experiences? Let's start there. Disabling experiences. What are they and why? And then I shift over into ableism and the whys. So we get to the who and the why, and then we're touching on ableism. That one's a little bit harder. There are some experiences that we have with oppression and what humans do to each other.

I think we all have experience there. But a lot of people don't realize just how hard the impact of ableism hits, and the fact that one in four people have a disability at any given time. People are shocked when I give that statistic. So what that means is ableism is impacting our population in high numbers. People that we know, that we love, our friends, our family, our colleagues. It's not nothing. It's significant. So that one's a little bit heavy, but it's honest and it's real. The third piece is like, okay, now we can get to access.

How do we do it? What does it look like? They're now motivated. They understand more about the people, the who and the what. They now understand the why, and now we get back to another what. And so that's how the book is structured and how I've laid it out. And then I'd like to add, you know, if people really feel like they want to apply this in their real life, there's a workbook that accompanies it. And that just comes from my teaching experience. I know that people need context and a space to learn. They need activities that are engaging.

They need high-quality activities. So that's why I went ahead and designed that workbook at the same time. I wanted to add that as a supplement to some people. You can use it individually. You can do it in a group. So it's really dynamic. And that's why I published that alongside the book.

Leslie:

I think that's so, so useful, right? We need ways to apply this stuff immediately. But I think sometimes people like, it's much easier if they're given exercises, they're given worksheets, they're given ways to think through the ideas. So it's like you created a course in your books. So I really appreciate that. And I'm wondering what it was like for you to write for a non-academic audience. What was that experience like for you?

Stephanie (via Interpreter):

It was new for sure. It was new for me. I have written for academic audiences for over 20, probably pushing 30 years by this point. And so that's what I had done. This was very new for me. I felt like I had a communication hat on the whole time. Like, how do I communicate? And then there's marketing. How do  I express things for people who are not going to be criticizing me through an academic lens, which is my history? So it was kind of freeing. That led to freedom, knowing that I was in this whole different space with this whole different audience.

It was good. It was good to have that freedom while I was writing. It was tiring. The energy required for this was rough. I needed to be consistent. So every morning from four to six a.m. I would get up, get some coffee, and work those two hours, and just try out, just try to get something out. And then the last thing, it felt like I was really kind of disclosing myself to people. So there was a bit of a concern about people, maybe how they would view me after that. You know, like, hmm, she's writing in this way.

But after the fact, it feels okay. I've accepted that people may look down on that piece of my writing, but I'm in acceptance. I'm good with it now.

Leslie:

Yeah, because they're not the audience for your book. Not for this book, right? Exactly. Who do you envision as your ideal audience? Who were you picturing as you were writing this book?

Stephanie (via Interpreter):

Okay, that's a funny question. So my first response was people, the people who are responsible for people. That was my knee-jerk, like team managers. mid-level managers, people who have a lot of responsibility without power. Interesting. So just understanding that situation and feeling really connected to that sort of group of folks. What was surprising for me, though, is disabled people themselves. I didn't write it for them because I felt like they already know they have disabilities. They know ableism, they live it. They know systemic oppression. But what's happening now, after the book is out, people with disabilities are still reading the book and saying, thank you.

Thank you for this. And they'll point to a specific piece that they're like this. Yes. Thank you. So it's kind of become like an advocacy work as well. Not that they need it, the disabled people need it, but more about the communities that they are in, the spaces that they're in. So both people with disabilities and those without, or those, this is how I like to say it, those who have yet to, not yet, have experienced a disability. because that's all of us. And so it's really different kinds of people, different groups who are showing up, being drawn to the book.

I've found healthcare workers are really interested in this book because their jobs, often their entire role, is to quote, fix things, right? They're in the fixing field. And so to have healthcare professionals and people reading this book, they pause for a moment. And they're like, oh, this is the experience of a disabled person. How can my role shift based on this information? How can my mindset shift? So that's fascinating to me. People in human resources, HR folks, are picking this up, and I'm getting, you know, when they're hiring people, I'm getting some comments from them.

Employees' quality of life is impacting HR professionals. They're reading the book.

And then lastly, people within higher ed, not the faculty. But the staff! The staff! Those people are hungry for resources for them, for themselves, for the university, for their peers and colleagues, the context where they work every day, staff, students. Specifically, it seems often that the staff at a higher education space is sort of neglected. They need resources. And so they're like, hey, I'm here. How can I approach it? So that's real interesting for me. It's a different piece of higher ed that's being impacted than I originally anticipated.

Leslie:

That's so interesting. I mean, that's what I like to tell all of my authors that I work with is like, you have no idea what your book can actually do in the world, what it will do, who it will speak to, because we go in with all these preconceived notions about what the book is, who it's going to reach, how we want it to make a difference. And then it can go and do a million additional things beyond that, which is so cool to see in your case, especially. And so you mentioned that you self-published this book.

That's so interesting. So what did you learn about going a non-traditional route when it came to publishing a book?

Stephanie (via Interpreter):

So I had a co-editor role within OUP, which is Oxford University Press. So I have experience in that space. I've done that for a while. So at first I thought I'll send the book to them because I work with those folks. They're my colleagues. And I have no doubt it would have, I know that they are high-quality publishers. And. Not a but, but an and here. And timing for me was critical. That was one important piece. As I mentioned, I wanted it to be within a year, not three. Okay. So different agendas, different timing.

Stephanie (via Interpreter)

And so for me, timing became a priority. So I learned a lot about the different moving parts and pieces of publishing. I worked with a book coach. I also worked with the editor. I had two. One was a concept editor. And then the second editor was more of a traditional type editor to the writing, the line editor, so to speak.

So I had two different phases. And then also I worked with the designer and the artist. I do have a longstanding history with the designer, so I collaborated with them in terms of the art and the design and what that would look like for this book and the products related to the books, the other merchandise, and what have you. I also learned a lot about printing itself and Amazon. How does that work? How do you get your book there?  Who buys what? How do you upload it? What does that look like?

So I worked with a company called the Self-Publishing Agency, TSPA, and their team really helped me quite a bit figure out the steps and how to move through this, and if I needed someone for formatting or editing. They gave me a handful of options for each of those roles. But if I had someone already, like the artist, I paid that person directly and I worked with them. And then I would give the file to whoever needed it to get it uploaded. So it was a lot more hands-on, little bit stressful. I had to prepay for everything, so honestly if you're gonna do this, you better have some savings ready to go because you prepay for all of it when you self-publish. So that was my process from the book coach early on to publishing for me took a year. That was the timeline for me.

Leslie:

Fantastic. That's like a blink of an eye for most books. So that's amazing. You clearly had a plan, right? You had a process that you knew you were going to go through. So I think that's going to be really helpful for people to hear as well. One of the things that I've obviously witnessed on LinkedIn is you have been building, I guess you could call it a personal brand, right? So like, your book has a certain kind of color scheme, logo, there's things that go along with it. So how did you come up with the marketing piece of this?

Stephanie (via Interpreter):

Well, I have a personal brand built. I've had that for about four years. So, well, really before COVID. So five years, I've had a personal brand. So that's been set my color scheme, working with my designer, who I mentioned, my artist and designer, same person for the book. We came up with colors and categories, what's primary, secondary, tertiary, way back. And so all my presentations, everything that I do in the world, my website, is all built and designed around that.

Leslie:

So smart. So smart.

Stephanie (via Interpreter):

Yeah, thanks. So even up until now, five years later, we had a new update of the website. We did kind of update some colors, wanting to emphasize the purple. now. Uh, so you'll see the purple, and that color was part of my original brand, but it was more secondary or tertiary, and it has now become over time my primary color. So we kind of flip-flop the colors a little bit, just that's part of the evolution. It's not a once-and-done. It wasn't for me. So my personal brand was a creation many years ago, and now it's sort of evolved and been updated, enhanced for the book and its publication.                 

And maybe in the future we'll shift again, we'll see. But that's where we are with that.

Leslie:

I love it because it's very clearly connected to you, right? I associate these images, these colors, with you as a person and with the work that you're doing. A lot of academics feel very uncomfortable with self-promotion, right? Even the word people can be like, I'm sorry in advance for promoting myself, right? Apologies for the self-promotion. How have you managed to put yourself out there in ways that feel authentic and genuine, and can be vulnerable too?

Stephanie (via Interpreter):

It's still hard. I can't say that it's easy because there are a lot of separate spaces that I move in. So the UT space, the priority here is research, and I run a center for research and teaching. So it's not as much the book itself here, but it's real interesting. Just last week, the provost's office had an event for authors. It didn't matter where or which publication, they didn't care. It was just like, Hey, if you have a book, Transcribe in English, but to have a separate mindset for like LinkedIn and the book and that space for marketing and promotion, and then kind of a different mindset for my research and administrative role at UT.

So I wear multiple hats. I made a new hat for this one. So I just keep changing out my hats, and that's kind of how I manage that.

Leslie:

Yeah, yeah. No, versatility, I think, is so important. And so kind of a more general question here about disability, but what do you wish people knew about disability that they might not already know?

Stephanie (via Interpreter):

I'll say two things, if that's all right, not just the one. First, it's how common the experience of disability is. I hear stories every day. It's part of the human experience, really. And so that kind of goes back to the title. That's where it came from. Realizing that people don't know that disability is part of the human experience. It's natural. It's part of life. And so isolating people or kind of thinking of them in a different space or category is not helpful because disability is human. It's part of the experience. And so if people could think about a disability being a part of who people are, who you are.

I think that would be helpful. I wish more people knew that. And then the second thing I'd like to say is progress is possible, and it's not even a lot of work. One step at a time, it's easy. And even that is really okay. You don't have to rush through it. You don't have to make leaps and bounds, but progress is the point. So one little step at a time is huge. And within the community of people is even better. You don't have to do it alone. Just a mindset shift, just opening your mind to this being a possibility.

Huge strides. Really, that's the goal.

Leslie:

Awesome. And I just feel like your book is, it's giving people access to a new mindset, right? As well as a more structural understanding, which is why I think it's really being received well by multiple different groups. It validates certain people's experiences. It opens ways of understanding in a more comprehensive way what folks are actually experiencing, and it actually gives practical tips. So I really congratulate you on getting this book out in a year, no less. So my very last question, how can listeners connect with you and purchase your book?

Stephanie (via Interpreter):

Okay, my website is the central place for everything. So it's my name. Stephanie Cawthon.com. And you can search for disabilityishuman.com as well. They're both linked, so you can get to both. And there are two things that I recommend. First, sign up for my newsletter. That's a good one. Comes out monthly. There's a lot of content related to this topic and current things. I try to kind of market and like, but also advocate and all the things through that newsletter, get that information out. And then of course, my book is available anywhere online, Amazon, and all of the bookstores, Barnes and Noble, all the things, and online, you can find it pretty simply.

It's out internationally. So, you know. When it's online, you can get it from anywhere.

Leslie:

Amazing. Thank you so much for your time and your insights today, Stephanie. And listeners, please connect with her on LinkedIn as well. And like she said, you can purchase her book and workbook from her website, stephaniecawthon.com. You'll be glad you did. Thanks again, Stephanie.

Stephanie (via Interpreter):

Well, thank you so much. And thank you to the interpreters. Thank you for the opportunity to be here today. I appreciate it.