Diana Pastora Carson:
Welcome to the Beyond Awareness: Disability Awareness That Matters podcast. Here, you will find a safe space to learn and grow with leaders in education, Disability Studies, disability advocacy, and diversity, equity and inclusion conversations. Specifically, we look at how disability fits into diversity, equity and inclusion, and how to frame disability awareness. In the context of educating K through 12 communities, this podcast serves educators, parents, and community members who strive to learn and or teach about disability in a research-based and respectful way. Moving beyond simple awareness and diving into inclusive and socially responsive conversations. Thank you for joining us today. Now let's go Beyond Awareness.
Diana Pastora Carson:
Hello everyone. And welcome back to Beyond awareness: Disability Awareness That Matters. I'm excited to introduce you to Dr. Christa Balka, who I just met last week. And I'm so excited to have her here on the podcast. She and I share a passion for disability awareness from a disability studies perspective, and I'm gonna let you, Christa, welcome...
Dr. Christa Bialka:
Thank you. I'm so thrilled to be here and to talk about this with you today.
Diana Pastora Carson:
Awesome! So I'm gonna let you give a thorough, proper introduction of yourself. You know, who are you, what are you passionate about and why is this topic of interest to you?
Dr. Christa Bialka:
Sure. So my name is Christa Bialka, as you said. My pronouns are she/her/ hers? I am. I wear a few different hats. I am an associate professor at Villanova University. I direct our undergraduate teacher education program, and I am also going to be directing our new Disability and Deaf Studies Program, which is a minor program that is launching, I guess we're in August, is launching at the end of this month.
Dr. Christa Bialka:
So I'm very excited for that too. What brings me to this work and my passion? I should also say, in addition to the academic hats I wear, I am a sibling. I am a parent, I'm a partner, and most of those hats bring disability into my life. As a former high school teacher, I worked in special education classrooms and that definitely affected how I viewed and understood disability and how I saw others, understanding disability and creating assumptions about folks with disabilities that were unfounded and often unfair. I saw that in my personal life as well. I have siblings with different disabilities and watching the ways that they were often misunderstood and undervalued was frustrating as a sibling, but really made me very passionate about wanting to raise awareness. And now as a parent, my son has an executive functioning-related disability. So now as a parent, I'm thinking about that as well in terms of what his educational trajectory will look like and how to make classrooms as inclusive as possible,
Dr. Christa Bialka:
not, I don't wanna say selfishly, so my son has the best possible experience, but I think the parent hat has also been a really valuable one for me. So all of those different pieces taken together and I have, um, mental health related disability. So that's also something that I think about a lot in terms of disabilities as they might be outwardly visible or not as visible to other folks. So I think this very heterogeneous understanding of how disability can show up and talking to students at the university that I work at and talking to my family members and talking to my son and just understanding why this is all so important to, um, to everyone really. I mean, disability is the largest minoritized identity in the United States. So it's something that affects not just, you know, my life in multiple ways. It affects everyone in different ways.
Diana Pastora Carson:
Thank you. Beautiful. I'm interested in knowing what your, what the ideal experience in your mind for your son. You had mentioned, you know, what you would want and not, not wanting it to be selfish, but for everybody in all different groups of people who can be, as you said, misunderstood and undervalued, I want today's episode to be about how, how it should look for all students in our school system. Right. But before we get to that, can you talk a little bit about the research that you've done and what does research say regarding how educators talk about disability in schools?
Dr. Christa Bialka:
I would love to. So this is a passion project of mine. Speaking of passion, as a former teacher, I didn't receive training in how to talk about disabilities. My training was very much along the lines of this is what a disability is.
Dr. Christa Bialka:
This is perhaps what it could look like in your classroom. These are accommodations X, Y, Z. What I didn't get was an understanding of disabilities of social identity. So recognizing that just like race and gender class, all of these different things make us who we are. Disability is another facet of humankind, but I really felt as though I lacked those tools to confidently talk about disability in classrooms. And I was operating kind of on a hunch that other people might be feeling perhaps the same way. And as I taught and I had more teachers, in-service teachers, pre-service teachers coming through my classrooms at Villanova. It really confirmed my idea that we're not having these conversations about disability, culture, disability, history, disability, as an identity. So I've been working with colleagues to conduct research to try to add a, an empirical, you know, a scientific understanding of what is actually happening.
Dr. Christa Bialka:
So some of the work that we're doing is pretty preliminary and exploratory, but I think the most important work we've done so far, we conducted a survey of over 250 teachers across the United States and said, are you talking about disability with your students? Are you not talking about disability? And if you're not talking about disability, what might be holding you back? And interestingly, over half of the people that we surveyed said that they didn't wanna be offensive, they didn't wanna offend anyone with a disability. They were afraid of saying the wrong thing. And that really struck me because I thought, okay, we've had conversations in other areas about how we try to disassociate saying the wrong things. So for example, with anti-racism, when we think about how we can be more inclusive, kind of moving away from making conversations and, and quote unquote, messing up as some kind of a character flaw as an opportunity for learning.
Dr. Christa Bialka:
So that was a really important piece for me in just kind of validating this idea that, you know, teachers are, are hesitant and maybe why they're hesitant. The other piece that we just conducted. We surveyed about a hundred numbers. They're still creeping up, but I was really interested in the perspective of disabled folks. I said, okay, so teachers are afraid of being offensive and saying the wrong things. What do you think? Do you think that, do you think that they should just maybe not say anything? What are your experiences like, and of the population that we sampled? They said, no, these conversations really need to happen because when they don't happen, that's when I feel invisible. That's when I feel stigmatized. That's when I feel that my voice isn't being heard or appreciated. And I guess underlying all of this work is really, really cool research by a person, Mara Sapon-Shevin, at Syracuse university.
Dr. Christa Bialka:
And she does work on, she calls it disability invisibility, and I mentioned antiracist work before not to necessarily say, you know, it's a different concept, right? But the work in this area is so well-founded. She compares disability invisibility kind of to colorblindness in our understanding of racism. So when people say, I don't see color, they're saying it often, because they, you know, they don't wanna offend a person of color or maybe they don't know what to say or anything along those lines, but when you ignore somebody's identity, you're ignoring their experience. And she talks about that in terms of disability invisibility. She said, when you don't talk about disability, you're ignoring somebody's experience and the barriers that they might encounter. So that's why it's really, really important to talk about it.
Diana Pastora Carson:
Mm, very cool. Yes, very important to talk about it. I love that, you know, the research shows that people just don't wanna offend. And so how do we empower people to be able to talk about it with some grace and some self-compassion and with respect for the people, and acknowledgement of people's experiences, disabled people.
Dr. Christa Bialka:
Exactly.
Dr. Christa Bialka:
So then what is the right way versus the wrong way to discuss disability? That is such a great question. And I honestly think that's a question that, that holds people up because we're, at least I was socialized in a way that, you know, talking about disability, the, you know, the education that I received and the social messages that I received, not necessarily in my own home, but in broader society, was that talking about disability wasn't polite. Right? It wasn't okay. So then what do you do? Um, and I think that part of it is just recognizing that we're off. At least in the United States, a lot of messages around disability are around disability as being inspirational or around disability as being pitiable or sad.
Dr. Christa Bialka:
So, first of all, just recognizing that these messages exist. I think that that's the first step. So kind of developing that toolbox so that when you watch a commercial or you watch a movie or anything along those lines, thinking to yourself, Hmm...what's a message that this is trying to send me about disability? And if I were disabled, how might I feel about this? So that's, that's one step in terms of, and not even thinking about it along a, a binary right/wrong, but just starting to develop those tools of awareness. The other piece is if you're having a one-on-one conversation with a person it's coming from a place of respect, right, versus being invasive. So if, think about the kinds of questions, I know that this might be simplistic, but you know, if somebody approached me and asked me some kind of a medical question, and I didn't know them, I might be like, what? Like, why are you...?
Dr. Christa Bialka:
But oftentimes, especially when people have visible disabilities, folks might just ask them questions about their disabilities without recognizing that, you know, they might not wanna talk about it and that's, that's their business. And they're completely entitled to feel how they feel. So I think that those two pieces are important to understand. But as teachers, something that is really important as to the quote unquote right way to talk about disability, I think really is framing it as a social identity. One thing that comes up with teachers, again, in terms of being offensive, is the idea that they're going to single out a student in their class and make a student feel bad. And when you think about disability as an identity, when you think about disability history, when you think about disability culture, when you think about how disability shows up in our society, it becomes less of a one-on-one issue.
Dr. Christa Bialka:
And it becomes more of a point of understanding our society on the whole. And I think that that's a way for teachers to move away from feeling as though they're going to offend a single student or say the wrong thing is just understanding how it, how it shows up in society and avoiding putting that disabled student they might have in their class, in the spotlight. You know, students also might not wanna share their...If they are open and comfortable sharing their experiences, great. But you know, obviously never singling a student out and saying, Hey, I know you are having this experience. Why don't you talk about it in class? So I think that that would be, that would be something to avoid is singling out a student,
Diana Pastora Carson:
Right. Yeah. As a, as a teacher, as a classroom teacher, do you have any examples of how you might incorporate a conversation about disability into the curriculum?
Diana Pastora Carson:
Can you think of some different courses or topics or, um, standards where topics of disability could be embedded?
Dr. Christa Bialka:
So many, so many? How long is this podcast?
Diana Pastora Carson:
Go for it. Go for it, Christa!
Dr. Christa Bialka:
So this is something that I actually really push, especially my in-service teachers on, because I think that something that can come up is disability, it's in the humanities, right? It's, it's easy to talk about in social studies and yes, certain subject areas might lend themselves more directly to talking about disability as a, as an identity. For example, disability is present in every major movement that we discuss in social studies curriculum. You know, when we're thinking about slavery, when we're thinking about the Holocaust, when we're thinking about immigration, all of these pieces intersect with disability in really powerful ways, it's a matter of unearthing what those connections are.
Dr. Christa Bialka:
For example, with, if you're teaching about the Holocaust, the first people who were targeted and, uh, and killed in the Holocaust were actually disabled children. And that is not always discussed. You know, we think about the Holocaust more broadly and other really important and impactful aspects, but recognizing that there is a place for disability in that conversation. So that's just one example from a social studies perspective, but I've had teachers who are so creative in thinking about disability in mathematics and thinking about disability in other stem areas. For example, I had a teacher who was teaching a physics lesson, and when he was talking about friction, he incorporated in a wheelchair. So I think that it doesn't always have to be a conversation about disability. Doesn't always have to be here is this famous disabled person. Let's learn about X, Y, Z, about this person?
Dr. Christa Bialka:
I think those conversations, there's a, there's a place for them and there's a time for them. And I also think that you could just create examples that include disability and by making disability, by normalizing disability and making disability visible in a lesson about friction. That's another way to just generate conversation, because what ends up happening, a student could say, oh, I have an uncle who uses a wheelchair, or, oh, I, and then other things could come up out of that conversation that are perhaps a bit more genuine. And, and maybe feel, I don't wanna say less forced, but open up avenues for students to share ideas, opinions, ask questions in a way that is more organic.
Diana Pastora Carson:
Thank you so much. Those are excellent thoughts about how to incorporate disability conversations without actually specifically having to have a lesson on disability. And I think that teachers need to hear that.
Dr. Christa Bialka:
It's something I think about so much because so much is being asked of teachers.
Dr. Christa Bialka:
And I think when we think about disability conversations, the idea is that I want teachers to understand that it is present in the curriculum in different ways, but it's, I think sometimes any kind of, um, new approaches, new ideas can feel daunting. And I think leveraging different resources that exist and already exist are a great way to start. I work with a disability organization, Disability Equality in Education that has myriad resources and lesson plans on incorporating disability, inclusive curriculum. And I'm actually working with another group too. We actually just got legislation passed in Pennsylvania, which is my home state regarding disability, inclusive curriculum. So really helping teachers think about how to have these conversations. But I think what I wanna stress to teachers is that resources do exist and that it doesn't have to be a complete overhaul of your curriculum.
Dr. Christa Bialka:
It has to be thinking about looking for those openings in your curriculum, that you might just not have been aware that they already existed.
Diana Pastora Carson:
I love that. Yes. Yay. .
Diana Pastora Carson:
Bell Rings. Cut to ad:
New Speaker:
Do you have a burning desire to have a more equitable and inclusive school culture? Are you a person who understands the importance of diversity equity and inclusion work in schools, but when it comes to disability, you're just not sure, you know, the right things to say and do. Maybe you're a special education teacher or a general education teacher, a specialist or an administrator. And you may know a lot about disabilities, but not necessarily about the experience of being disabled by society. You're interested in disability awareness that will actually make a difference, but you feel stuck. Maybe you're still experiencing a lack of guidance and lack of research-based disability awareness materials or strategies.
Diana Pastora Carson:
Maybe you're seeing segregation on your campus and a lack of belonging for all students. Maybe you feel frustrated due to resistance, to inclusion, and you're afraid that you're not qualified to lead the charge for disability inclusion in your DEI work. You know, there's gotta be a better way, but you're not sure what it is. If this is you, then I have a couple things that might be helpful to you. First off, I invite you to take advantage of my free resource called the Five Keys to Going Beyond Awareness. All you have to do is go to GoBeyondAwareness.com/keys, and I'll send you my important tips for starting your journey toward a more inclusive school culture. And if you've already started the journey and are wanting more to keep you grounded and moving forward in disability awareness, that is based in dignity, respect, and research, then head over to GoBeyondAwareness.com and sign up for my compact digital Beyond Awareness course filled with valuable information and resources. In it, you'll learn the foundations of disability awareness strategies that align with research. So you can feel confident in your diversity equity, access, inclusion, belonging, and disability awareness endeavors. Again, just head on over to GoBeyondAwareness.com. (School bell rings. Back to podcast.)
Diana Pastora Carson:
Okay. So let's take it back to what, what do we wanna see in the overall school experience for students who have a variety of disability labels and disability experiences such as your son and others that you've encountered in your career? What is the ideal, the optimal educational experience for these students in terms of self-validation and, having their culture and their history and their identity affirmed and validated while getting their education? What does that look like? What would your dream school experience be?
Dr. Christa Bialka:
It would be having equal representation, reducing stigma around disability, through increased conversation. It would be classrooms that are filled with pictures of all different kinds of folks. And again, disability is an intersectional identity. So you could have multiple identities and be disabled, and that also informs your experience. So it would, it would be normalizing disability, and it would be recognizing barriers. And it would be a way to make children at a young age, and it's totally possible, aware of barriers that could exist for disabled folks on how to remove those barriers in a way to be more inclusive. Because when you have those conversations and you create those opportunities at a young age, then students, then it just becomes more secondhand. And students already are thinking through that lens as they get older.
Dr. Christa Bialka:
And it's also students, you know, disabled students being in classrooms in schools and being amongst non-disabled peers. It's learning on both hands. I think that the learning is equally important for non-disabled students, because I mean, research has, has proven that inclusivity is one of the key indicators of student success of disabled student success later on. So the more inclusive we can make our classrooms that's, that's the ideal, right? That's the, the dream, and recognizing that it takes a committed school district, it takes resources. It, you know, sometimes inclusion done poorly can actually be very damaging because it doesn't support all of the students in a way that allows them to be successful. But, you know, investing in that is incredibly important.
Diana Pastora Carson:
Yes.
Dr. Christa Bialka:
And doing the research, I mean, which is maybe circling back to an earlier question that you had, but, you know, recognizing that there are people they're looking to the experts and by the experts, I mean, disabled folks, they are the people with these lived experiences.
Dr. Christa Bialka:
And whether it's teachers asking them as resources to come in and speak to classes, or if they're unsure of how something could play out, there are so many wonderful activists and advocates out there, Imani Barbarin is located where I am here in Philadelphia, Crutches and Spice. She's fantastic. She has a very high social media presence. Reading books about disability or listening to podcasts, can be so helpful. And these, again, these resources exist. It's just a matter of, you know, recognizing that they're out there.
Diana Pastora Carson:
You know, I just wanted to mention that, you know, you said that the non-disabled students learn just as much, I mean, benefit just as much or more from having these conversations and having this inclusivity as a normal part of our everyday schooling experience. But I also wanna say that as a classroom teacher and a colleague to so many, I have heard people say over and over again, thank you for bringing these disabled individuals onto our campus to talk to our kids.
Diana Pastora Carson:
And thank you for, you know, showing me that it's more about access and it's more about respect and it's... We learn as professionals. We learn so much by our own commitment to inclusivity of all students. We are forced to learn sometimes when we encounter unique situations with students who have unique learning styles, who are thrown into a system that doesn't always, isn't always accessible to them for their learning. And so as committed educators, we then have to rethink, we have to listen, rethink, relearn how we can approach learning, approach teaching, for different learning styles. And so I find that it makes me a better teacher when I commit, you know, if I'm forced to do something, then it might not make me a better teacher. I might have some resentment and I might have some added stress. But if I commit, because I understand the impact, the effect of my commitment on all my students, to all of their learning, to all of their experiencing, you know, a sense of belonging and knowing that their humanity, that their experience matters to all of us in our learning community, that that's gonna make a long-term difference in their lives.
Diana Pastora Carson:
And so I, I guess I just said that because yes, it benefits your students with disabilities. It's benefits, your students who are not disabled. And it also benefits us as professionals, as educators.
Dr. Christa Bialka:
Exactly, exactly. Could not have been stated more clearly and well because what is it? You can't be what you can't see.
Diana Pastora Carson:
Right.
Dr. Christa Bialka:
You know, so recognizing, and I think, again, along the lines of what you just said that applies to nondisabled and disabled students, right? Disabled students, wanna be able to see people who look like themselves. Um, Rebeka Taussig wrote this incredible, incredible book called Sitting Pretty, where she talks about...So she has a, she uses a wheelchair and she talks about not seeing anyone who looked like her as an adult and how she wishes she had, because it would've kind of informed her ability of what was, or her understanding of what was possible.
Dr. Christa Bialka:
So I think for disabled people, that's incredibly important, but for non-disabled people who are going to be in different positions as they go through their educational and then, you know, whatever postsecondary experiences, they might have, understanding that if they're hiring someone or they are in a position of, of power or privilege, that if somebody, if they're working with somebody disabled or somebody disabled is, you know, applying whatever the case may be, that their experiences, that they're just as valid and as anyone else and having the experience and understanding through, you know, seeing that in childhood, I think is, is incredibly it's critical. Because if not, then it just creates additional segregation. It perpetuates segregation and misunderstanding and divide.
Diana Pastora Carson:
Yeah. And, and I had a conversation with Dr. Toni Saia as well, who's going to be on the podcast. And she was saying that there is an internalized ableism that is perpetuated in disabled people when they are made to feel as if they don't belong, when they're made to feel as if they're not of value, that their existence and their experience and their voice is not of value to the rest of the community.
Dr. Christa Bialka:
Exactly, exactly. And if you're disabled, you are not a burden. You are entitled to what you were entitled to. And when you have to ask for it, you're not doing anything wrong, you're not overstepping. You're, you're stating what you need just as you should. And I think that I completely agree that because our society has this focus on hyper productivity and that, you know, independence and all of these different aspects, that there's, it's somehow you're seen as, as less than if you do need to advocate for what you need. And advocacy, I think, especially for students is one of the most important tools that that students can learn is, is how to self-advocate.
Diana Pastora Carson:
Oh, absolutely. Absolutely. And we as educators really need to practice gracious honoring of that advocacy. Yeah. And not take it personally, right?
Dr. Christa Bialka:
Yes. Yes. Exactly.
Diana Pastora Carson:
And that can be hard sometimes because you're working your tail off, you know?
Diana Pastora Carson:
But it's really critical in the long term life quality of the students that they learn how to advocate for themselves because, and you have to understand that access is not always present and discrimination is very present still, even though we have legislation. You know, Alice Wong says you can't legislate love. Right? And so, uh, we need to create more loving and inclusive environments. So that's the why behind we've gotta really empower students to be self-advocates. So Dr. Christa Balka, do you have any last words of wisdom for our listeners?
Dr. Christa Bialka:
I would say be okay messing up. You know, it's not a character flaw. We all do it. If you do say something or do something through the learning process or through the process of maybe educating your students or having a conversation with someone that it's, it's okay. And it's an opportunity for learning and not an opportunity or a reason for somebody to engage in shame, right?
Dr. Christa Bialka:
That it's what you do with that experience that really matters. I think for educators, understanding what resources exist, reaching out to the disability community, especially those in your area, if you are unsure of what to say, what to do, leveraging their expertise and their experiences. Stories are so powerful. And I think to your earlier point in understanding why this work is so important, oftentimes hearing about experiences that folks have had really concretizes why you should be doing what you're doing. And then my advice for parents too, is to create a dialogue with their children through children's books. That's a great way to start. It opens up so many different opportunities for kids to ask questions about...Kids can notice and name things right in a, in a safe space where they can ask questions and, and the parent can, even if they don't know, you know, they can figure it out or they can find out. They can find their own resources.
Dr. Christa Bialka:
But oftentimes when parents open up that dialogue at home, it can make it easier if they are out and about in the world or the child does notice and name something to kind of set in motion this way that we might respond and whether it's responding in the moment or having a conversation at home. I think that that is also comforting for children to know that they have a place to go to ask questions and that disability isn't taboo. And I think that that's something that can often happen if we don't have those conversations starting at home is that that's often where you start to normalize different, all different experiences, not just disability. So I think for parents starting that work at home is really important.
Diana Pastora Carson:
Absolutely. Absolutely. And to your point about children's books, I don't know if everybody in the audience has seen it, but I did release a Beyond Awareness Guidance for Screening Classroom Books, video, and it's on YouTube and it's got some suggested books in there, but also some guidelines for how do you know if this book is going to be dignifying and respectful?
Diana Pastora Carson:
So I just, I wanted to mention that as well, but I love what you said for educators. Yes, definitely. Books, books, books, and conversations at home that really demonstrate that your child is a person of value that your child's voice matters. And that disability is just one part of their identity. It is a part of their, not just one part of their, it is a part of their identity and one that they do not need to feel shame about or feel like they're a burden because they're not, they lend so much to our culture, to our community, to our family lives. And it's important that they know that.
Dr. Christa Bialka:
Could not agree more.
Diana Pastora Carson:
Well thank you so much Christa, for being with us today.
Dr. Christa Bialka:
It was an honor. Thank you so much for having me today.
Diana Pastora Carson:
Thank you for tuning into this episode of Beyond Awareness: Disability Awareness That Matters. If this was helpful to you, be sure to subscribe, rate, and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me, Diana, on Instagram @dianapastoracarson and on Facebook at www.Facebook.com/GoBeyondAwareness. Or you can go to my website for more information at www.DianaPastoraCarson.com. My books include Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. They can both be found on Amazon. For your free Beyond Awareness resource called the "5 Keys to Going Beyond Awareness," simply go to www.GoBeyondAwareness.com/keys. This podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of Emmanuel Castro. Thank you again for joining me. Be well, be a lifelong learner, and let's be inclusive. See you next time.
