Disability is Human with Dr. Stephanie Cawthon

Website: www.StephanieCawthon.com  Stephanie W. Cawthon, PhD is author of DISABILITY IS HUMAN: The Vital Power Of Accessibility In Everyday Life, a researcher, and consultant who brings relatable insights and real-world skills to her mission that – when we tap the power of accessibility – we ensure disabled people can thrive and succeed. Dr. Cawthon’s groundbreaking research has been funded by over $50 million in federal and other grants. In 2023 she founded the National Disability Center for Student Success at The University of Texas at Austin, where she is a tenured Professor of Educational Psychology. She brings a lived experience to her work. In addition to her congenital hearing loss, she has several mental health and physical disabilities that have a significant impact on her ability to engage in important life activities. Dr. Cawthon earned her Bachelor’s and Master’s degrees from Stanford University and her doctorate from the University of Wisconsin at Madison.  Social media: LinkedIn: https://www.linkedin.com/in/stephanie-cawthon/ Instagram: https://www.instagram.com/drstephaniecawthon/   Interview Transcript (11/14/24)   Caroline Dowd-Higgins (CDH) I'm Caroline Dowd Higgins. I'm a speaker, an author, and an executive coach. And today, I am delighted to welcome Dr. Stephanie Cawthon to the show. Stephanie is a researcher and a consultant who brings relatable insights and real-world skills to her mission that when we tap the power of accessibility, we ensure disabled people can thrive and succeed. And I must tell this amazing global audience, this is a very special episode today. Dr. Cawthon is deaf, and we're joined by two of her interpreter colleagues, Olivia and Amanda, and we are delighted that they will be simultaneously interpreting our conversation today. The audio version of the podcast will appear on all major podcast platforms. Stephanie, welcome. I'm delighted that you're with me today.   01:33.76 Amanda Ford (voicing for Stephanie) Well, thank you so much for having me. I really appreciate having this time with you today.   01:38.70 CDH You are very welcome. So, let's dive right in. Stephanie, you are a professor, an author, and a lifelong advocate for the deaf community. What compelled you to write Disability is Human, your wonderful new book?   02:03.23 Amanda Ford (voicing for Stephanie) Well, thank you for the opportunity to share that with you. So, the story really behind the book is a culmination of 25 years of experience with individuals, groups of people, students, and colleagues doing different workshops along the way in different spaces. What I've noticed is that many people feel hesitant or afraid of talking about disability. They don't know what to do or say.   02:28.46 Amanda Ford (voicing for Stephanie) They think: Do I need to help them? Do I need to make the world a better place? What does this look like for people with disabilities? And so, I thought it was time to take all the research and all the lessons that I've learned over the years and put it in a book where people could read it—those who want to make a difference. And honestly, it's for those who think, gosh, I don't know where to start. I wanted to give people a place to start, a platform to kind of jump from and where they can read some stories and say, ah, I get that. That makes sense to me. This is where I can start. It's not overwhelming. There are little steps, little things they can do along the way after reading this book. And so that's sort of what prompted my writing this one.   03:14.94 CDH Well, Stephanie, I'm deeply grateful because I learned so much from you in this book, and I'm eager for you to teach this global audience a bit today. But let me start. Something that I learned when reading your book was that disabled people experience high levels of discrimination, bullying, unemployment, reduced access to health care, and exclusion from faith communities and many, many more. So, I'd love for you to help this audience understand why those things are happening and how you have been an advocate to really change that.   04:03.59 Amanda Ford (voicing for Stephanie) Well, sure, historically, in our culture and society, and it's everywhere. It's the view on disability that is often couched in a negative light. People are separated from our understanding of what's normal and what people prefer, right? By and large, people would say they prefer not to have a disability. It's hard. It makes life harder. And so, with that in mind, that is just ingrained within ourselves, and also within disabled people. And even at that point, disabled people often want to separate themselves and mingle more with those who have that common experience.   04:44.44 Amanda Ford (voicing for Stephanie) And so, if we think way back, even in education, we used to have separate schools, separate environments for those children with disabilities to learn and be educated.   That is part of our history. That's ingrained. And that is how we all have learned about disability until much more recently. And so, if we think about that separation or segregation of people with disabilities, even from a young age, we realize how it impacts everyone and how they experience life. And part of why I wrote disability is human and the book itself is because it is a human experience, and it encourages people to consider everyone having a human experience, and at some point, we might all experience a disability. And so, with that in mind and that perspective, I feel like that really helps shape and navigate this thing we call life. And so, separating out people really doesn't help the situation, but that is a historical context in which we find ourselves.   05:53.16 CDH I appreciate that. That's excellent context. Stephanie, something that you said in the beginning really resonated with me. You said many people fear those that are disabled. And I have seen this in my own personal experiences. I've seen this in in workplaces and interviews. And I must say, too, it's also confusing. The word disability has been a questionable word in recent decades. And I have heard that “differently able” is a more appropriate term. Help me understand how we can honor all people with disabilities and address them with dignity and respect.   06:42.66 Amanda Ford (voicing for Stephanie) Yes, words are definitely an issue. So, when I'm teaching, I teach a course here at UT, I refer heavily to language and the words that we use. Typically, what I say is ask the person what their preference is because it's not a one-size-fits-all. Not everybody identifies with their disability in the same way. Generational gaps play a part. For me personally, my view of language surrounding disabilities is evolving and changing on a regular basis.   And so, person-first language has been a shift. And in academia, it seems that that is still the preference by and large. However, there has been a shift in the community to disability-first language. Because it's part of our identity. For me specifically, it's identity-based language. That is a more common thing, specifically with the younger generation, Generation X, you'll see people saying, hey, you know, introducing themselves and putting their disability kind of right in the mix.   Instead of separating themselves out from it, it's more of an accepted and sort of a space where people reclaim that and have a more positive relationship with their disability as it's a part of their identity. I have become more and more comfortable using a disability to describe myself. Now, that's very new for me. Growing up, absolutely not. We were not talking about it. We were avoiding it. But figuring out how to reclaim that and garner some respect as I've done that has really been a shift for me personally and professionally.   08:30.86 Amanda Ford (voicing for Stephanie) I think it also matters on context, who we're with, where we are, thinking about the relationship in which we find ourselves. I am used to people with disabilities. And so, I talk about that. We set that up. And among ourselves in our culture and community, that is how we refer to ourselves. But when we're among other people, if they don't know about disability or if they're uncomfortable, I will try to sort of meet them where they are and build that bridge. So, it's respecting me and them based on where we are. So, I use both. Again, it really just depends on the situation and the people I find myself with in terms of how I use language surrounding disability. And another thing is, I often give advice to people to be careful how you approach the person themselves, right? So, language matters, words matter, and the person matters. And if a person with a disability says they want to use a particular type of language to describe them, that's the end of the story. It is really where I stand with that is respecting that person’s preference and going with that. 09:43.21   CDH That makes so much sense. Thank you for that clarity. Stephanie, my next question is about accessibility. And you write very eloquently in the book that accessibility is a vital power. So, tell me about that. And how do you define accessibility?   10:09.28 Amanda Ford (voicing for Stephanie) Okay. Well, I'll start with a definition, but I'd like to go back to empowerment because those are two critical pieces and they're separate issues that are really powerful. So, accessibility for me, I'll give a definition often with two or three prongs. And so, what we're looking for is accessibility to information. Sometimes that's not too terribly clear, so I like to clarify it. And let's identify who we are. How did we grow up? What is our relationship to ourselves? And accessibility to my development, for myself, how did that work? How am I able to navigate the world? How did I grow up doing that? So, accessibility to our own development and growth, our own opinions and beliefs, and personally, with me and how I engage with other people, and not experiencing criticism, or if I have from other people, but not doing that to myself. Ableism is a big piece of this puzzle that we experience every day and sometimes we internalize that. So, accessibility is sometimes the deprivation of a way to experience life without ableism or without that lens. And so empowerment also goes back to self-esteem and how I can take in the world and feel that pride within myself. So, access to information is pretty common. That's a common one.   11:45.80 Amanda Ford (voicing for Stephanie) Website accessibility and accessibility to employment. I think people understand that most often when we when we link it to that. So, if you can't see the pictures, do we have alt-text? That would be for a visual impairment or disability. If you're watching or showing a video, are there captions? These are all different ways that people access information that need to be considered in terms of accessibility. So, if there's a live film or the news, sometimes they'll put an interpreter on screen with some pertinent information. So, these different ways that we're accessing information and newsletters, it's the opportunities to access the same information as our peers out in the world.   That is very important. How we elevate ourselves in any situation is that access to information. Another thing that I find to be really important that is often overlooked is access and relationships to other people. If you're isolated, a person with a disability doesn't have friends, they don't have access to social networking or that sort of social capital, like other people, their peers, how do you face barriers? Well, if you've got that network, that crew, your people, then you can sort of learn how to do that as a group. And I often feel like, but people say we may not need support. However, I find it to be the opposite, is access to others, going to happy hours, and it's a mixed crew, right?   Amanda Ford (voicing for Stephanie) Let's say there are deaf people invited and a lot of hearing people who don't sign, will there be access to those others by way of a sign language interpreter? So, for me, it's those key moments. It's sometimes those little things, the incidental learning, those incidental social events. If the person does not have access to others, again, that's another piece of access that is often overlooked as those little incidental moments.   You also mentioned empowerment when you asked me that question. So, access is power. Access is empowering. And giving that power to the people who need the access is imperative. Giving your employee, if you're a company or an HR person, you give them power to be independent to access all the things they need to, in this example, do their job. I think that's very important, and access is power.   14:32.03 CDH So, I'd love to talk more about that access in the work scenario. Sadly, I've been in organizations where they have not welcomed people with disabilities because they didn't know how to accommodate them and honor their needs. There must be a better way, Stephanie. So, teach us how can employers around the world welcome wonderfully talented people who have disabilities into the workplace so they can be high functioning? What's the first step?   15:14.06 Amanda Ford (voicing for Stephanie) Well, the things that I mentioned in the last question, allowing access to all the different areas of employment, I think often people wonder if they're being hired because of their talents or is it the disability? Will I be accommodated? So just having that welcoming space and that attitude right off the bat is really good.   So, people feel like they will be able to build their skills and their competencies in that space and not really be resisted because they have a disability. So that is a great place to start by reading my book. Lots of different tips and tricks in there, places to start. And I think a second thing is just keeping in mind your audience. Are their clients involved? Is it a product? Is it a person who's in production who is paying for products and services?   I think that's imperative to remember because if you are producing a product the statistics show that one in four people at any time has a disability so a company may hire a person who at that moment does not have a disability, and then they experience a disability, or your consumer, depending on the type of business you own and operate, you might be serving customers with disabilities and your return on this investment will be huge if you design and approach your products, your services, your clients with a disability and accessibility in mind, because it supports all the different audiences, all the different clients and stakeholders.   Regardless of who you're serving, it really benefits everyone to make all of the products or services you're creating and distributing more accessible. It helps everyone regardless of their status or label. And so, a person with disabilities is going to be purchasing things, right? Just like everyone else.   So, acknowledging that and recognizing that, knowing that if your product or service is accessible, the disabled community will be able to purchase or experience whatever it is you are selling or providing. And so, I think that's a really important piece of this as well, to not only be mindful of who you're hiring, but who you're serving as well. So, people feel like they have a way to access your products or services.   17:50.75 CDH That makes great sense. And I'm deeply grateful that that information is also in the book. And very soon we're going to talk about how we can buy your book. But my last question today, Stephanie, you talk about helper syndrome. Tell us what helper syndrome is and how it relates to ableism and disability.   18:21.83 Amanda Ford (voicing for Stephanie) Certainly. So, one thing that you should know is I grew up with the helper teachers, they wanted to help kids learn and grow. And seeing that helping within the service field is sort of just the way it is health care, social workers, and the like, that is often what draws people to those fields. And so, I acknowledge and recognize that helping is a good thing. And I would like to say that full stop. This is an and-not-a-but full stop because helping can become an identity, not an outcome for a disabled person. And so, if they're always getting helped, if my agenda is to help, help, help, help, help, instead of teaching the person how to self-advocate.   Or giving them the tools to be empowered to move forward in life on their own. It's very different and it gets really close to ableism. Sometimes that line is really skewed. I try to focus on empowering people and giving that trust yourself. You can succeed without me, for example, and if I'm the person in that scenario, you don't need me.   However, if I feel like, or the helping person feels like, we've got to help them because they can't. I've got to do it for them. I must help. That often is a negative connotation, and it seeps into the person we are trying so desperately to help. They then experience learned helplessness and the cycle continues. It's quite the opposite of what we want. That helper mindset, while it's good, it also can become a detriment.   And so, how we do that is by shifting our attitude and our mindset and really communicating clearly and openly, coming into that relationship as a partnership, not a helper being helped. And my need to help them may sort of overtake what they needed. So really emphasizing and being on the same page with the person you're working with, being in collaboration with them versus the mindset of helping them.   20:47.37 CDH I love that, Stephanie. That is such an aha moment for me. And I appreciate that collaborating with them, not always doing it for them. And my observation is that people might be well-intentioned, but to your point, we're taking the power away. And you are someone who celebrates empowering those with a disability. So, thank you for that. That was very powerful.   21:19.81 CDH Okay, well, let's talk about how we can buy your incredible book and workbook. It is called Disability is Human: The Vital Power of Accessibility in Everyday Life. And of course, it's available on Amazon and all major book retailers. But Stephanie, would you be so kind as to tell this global audience how they can connect with you after today's show?   21:51.88 Amanda Ford (voicing for Stephanie) Certainly. Thank you so much. There are two great ways. I am on LinkedIn every day. So you can follow me on LinkedIn and connect with me there. I also have a newsletter that comes out monthly. You are welcome to sign up for that on my website. It's my name, Stephanie Cawthon.com.   22:11.74 CDH Fantastic. Stephanie, Olivia, and Amanda, I am so grateful that you spent time with me today. I learned a lot, and I'm delighted that we learned together. So, thank you for stretching me, helping me grow, and for the incredible message that you shared with this global audience.   And I also want to give a special shout out to my extraordinary podcast colleagues, Laura Deck, executive director of publicity and communications and Claire McInerney, our executive producer. Thank you for making this show awesome for our global audience. We now have listeners in 34 countries. I'm Caroline Dowd Higgins. Thank you for listening.