COE Connections Episode 4: Assistant Professor Toni Saia

Dr. Toni Saia
I have to be really conscientious of where I publish, and who I publish with. I do not just put my name on any article that's talking about disability. If it's not grounded in an approach that's consistent with disability culture, because I feel like I owe that to my community. My disability community again, so often we're not represented accurately or authentically, in research, in media, that it's really important for me to make sure that everything I put my name on, I'm proud as a disabled woman, to have my name on there. So that's very interesting to navigate as a brand new faculty member.

Dr. Rachel Haine-Schlagel 
Welcome to Coe Connections, the SDSU College of Education, Research and Scholarship Podcast series. I'm. Your host, Rachel Haine-Schlagel. I'm the Associate Dean for Research in the College of Education, and an associate, Professor of Child and Family Development here at San Diego State University, a Hispanic serving institution on the land of the Kumeyaay. This is our fourth episode of the series, and I am joined today by Dr. Toni Saia. Toni is an assistant professor and a director of the rehabilitation technology certificate within the Department of Administration, Rehabilitation and Postsecondary Education. She is a disabled woman with a deep commitment to social justice, inclusion and equity. For all her professional work, history has involved advocating for a progressive understanding of disability within the applied fields — a shift from diagnosis to disability as a culture and identity, one worth choosing and celebrating. She is one of the originators of the American rehabilitation, counseling, association, or ARCA's disability-related counseling competencies informing the work of 55,000 counselors nationally. Her vision is of a just world where disabled people have equal opportunity to participate fully in all aspects of life. Where communities are barrier free, access is universal, and discrimination is unthinkable. Welcome, Toni, thank you so much for taking the time to talk with me today before we get started. I just wanted to mention i'm actually working from home today. Where Where are you today.

Toni Saia
I am also working from home today because it's most accessible. Given the rain.

Rachel Haine-Schlagel 
Yes, yes, we are supposed to be having rain. We've had rain from time to time the last few days. So yes, good reasons to stay at home. Okay. So I have a few questions prepared to ask you and let's see how it goes. My first question is, why do you study what you do?

Toni Saia
Yeah. So great question. And I study specifically about disability, culture and the lived experience in the applied field. And I study that because I am a disabled woman, so who better to do that than people with lived experience. And the second reason is that in applied fields, like rehab counseling, I think we have, even though it's geared towards disability and an understanding of disability. I think it's often lacking the lived experience and disability as a culture. In the applied field we talk a lot about diagnosis, and that's obviously a part of the conversation. But we don't talk about disability like we do other aspects of identity. And so I think it's really important, because if we're going to train students to, you know, work with disabled people. It's important that they understand a disability in a whole in a holistic way. And so, as a disabled woman and researcher. I I often with Google articles, and I wouldn't see anything about, or hardly anything about disability as a culture, especially in rehab counseling journals. And so I really like to move the conversation towards that, because I do think that there's a big cultural component to the disability experience.

Rachel Haine-Schlagel 
Yeah, I think that is such an important sort of cognitive shift that that society can and needs to make in terms of how disability is viewed. It is a culture, it has its own sort of shared norms and shared experiences and shared values and beliefs. And you know one of the things that I don't know if we're going to talk about this later. But when you know, thinking through some of the things that you sent me to read, which were just fantastic. Was this idea of a a positive identity. And I'm going to read something that you wrote was like you, for there to be a shift as disabled being seen as a personal tragedy to disabled being a positive identity.

Toni Saia 
Yeah. And I I think specifically to we have counseling, sometimes we frame disability in the in the confines of service delivery and so we just see disabled people on on the receiving end of services, whether it's counseling or our resume support, whatever it is. And again, I think that that cultural component and that identity piece gets missed there, there's a whole culture we're proud of who we are, and we're disabled people. We we bring a lot to the table right, our our work, all types of things. And I think again, it's just important that we continue to shift in that way, especially in the in the diverse world that we currently live in.

Rachel Haine-Schlagel 
Another thing I wanted to just ask you to talk a little bit more about is is sort of what the concept of disability culture means to you.

Toni Saia
So disability, culture to me means community. It means shared experiences. It means a shared history of oppression, but that we're coming together to acknowledge that, and, you know, move forward together in unity. I think so often we separate the disability experience based on diagnosis. And for me this is that cross disability, experience, like all are welcome, right? We're not checking your disability experience at the door. We just believe you. There's no there's no kind of discussion about it. It it immediately goes from you know. You're welcome, and we talk about life hacks, and we talk about again shared experiences. I will never forget one of the first times I was like I felt like I was immersed into disability culture. It was when I was with a bunch of other disabled people, and we were, you know, protesting for our rights. But it didn't matter the type of disability that we had. We were just coming together. And so it was really about that culture. We had a shared goal. In disability culture, we explore our history, and and that gets ignored. So like how many times do we have disability, culture and basic or disability, history and basic history classes, we don't. And so for me. It's also that reclaiming, I think the biggest part should have said that first. The biggest part of disability culture to me is me reclaiming the experience. Society can think whatever they want about disability. But I, as a disabled woman, get to reclaim what it means to me. So I make that choice by language. I make that choice by projects I'm involved in. I make that choice based on what I research. It's it's a reclaiming like I'm here even, and I want to be clear, even though society isn't prepared for me, I'm here. And that's a big deal, because that gets to representation that gets to ... that representation that somebody else could see me and realize that they could be here too. So that's what I also hope to do at my research. I hope I excite future disabled researchers and scholars to to continue on. I almost always try to publish with other disabled people. So i'm also very thoughtful about using my privilege to give other people experiences to to this. So yeah.

Rachel Haine-Schlagel 
So let me ask you this. This sn't a a question. It's actually more request. But can you talk about an example of the impact that your research has had on the community, and you can define community however you you would like.

Toni Saia
So, a couple of things. I think one of one of the biggest impacts that I think my research has had is the research that's focused on disability cultural centers within higher ed. I wrote and conducted one of the first data-driven studies on disability, cultural centers in higher head. I think that had a huge impact, because again, we know of other cultural spaces for other identities on campuses, or institutions. But there was not much out there on disability cultural centers. And so, I think, just to have more information — and my study was from the perspective of disabled students that were a part of a cultural center — disability cultural center. It exposed the community to a while other area, a a big gap. And I think one of the other things that all my research that I try to do is I really purposely try to publish an open access, so it can have an impact on the entire community. I personally, as a scholar, I don't want my research to stay in the confines of a journal, especially given what I research right? I researched things that elevate the experiences of disabled people, and I want the community to have access to that. So I make a very consonant decision to publish an open access so community members, people, can have access to it. One of the things I hope that I do, in all that I do is again elevate the experiences of disabled people. I think it's important to note that historically, in research disabled people were researched. We weren't part of the process from the beginning. We were, we researched. You know, for whatever reasons, and I think that there's a very big difference when a disabled researcher is planning a project from the ground up with the goal of involving the experiences. And I don't just do research to do it. I do it to meet the needs of the community that I that I'm researching so that I can make larger impact. So again, my goal is to that it leaves the journal, and it impacts practices and conferences. And the way we design things.

Rachel Haine-Schlagel 
Yeah. I was struck by reading one of your papers that is specifically about about how associations, professional associations that are in in the Rehab counseling world can be more welcoming and less ableist in the way that they conduct their business. So even the professionals themselves have a lot to really think about in terms of making the work of being part of the profession of rehab counseling accessible.

Toni Saia
And I think that that's even more important for us as rehab counselors, because again, rehab counselors often claim disability like they claim knowledge of disability, but knowledge of disability doesn't mean you get a pass to be ableist right. You still have to do the work. You still have to dig deep, and all because we study something, that doesn't mean that there's no growth to be had, and I think it's really important. I think a piece of that article that I really push for is that it's not enough to claim disability. How are disabled people represented in our organizations? Because if you claim disability, but yet there's no representation for me that's a mismatch. If you're not going to make your organizations accessible, that's a mismatch.

Rachel Haine-Schlagel 
Yeah, no. Those are such important points and really impactful messages that you're sending out to your profession as well as to the broader community. Okay, now, I want to ask, what do you struggle with most in studying what you study? 

Toni Saia
Because I am a disabled woman, I'm tied to the research that I do. I can't turn my research off at 5 p.m. It's very much about lived experience. I'm impacted by it, right, because of my identities. And so I think what I struggle with is that there's still so little out there on disability as a culture specifically in rehab counseling journals. And so sometimes I struggle to make sure that I'm closing the gap. I always am trying to bring in new voices with me, and collaborate because, of course, I'm only one single disabled person right? I'm very connected to the community but I don't want to ever want to feel like I'm speaking on on behalf of the entire community. And so I kind of struggle, I think also in our field, sometimes I feel like, because disability culture in in this field is rather new — I want to be clear, it's not new to disable people — but within these applied fields it's rather new, I feel like sometimes it prevents my research from getting out there, because, you know, reviewers are not aware of disability, culture. And so I have to be honest. I never know sometimes if my article doesn't get in there because of ableism, because the topics I write about make people uncomfortable. They always push for more. They push for more access, they push the boundary, they have strategies to make things more inclusive, and I think we currently live in a world that's not made for disabled people, and I think some of these things make people uncomfortable. Sometimes it prevents it from getting out there.

Rachel Haine-Schlagel
Yeah, that's such a ... I'm at a loss for words thinking about how how ableism can impact those those parts of your professional world in terms of what you're actually studying — that some reviewers, some professionals don't have an open mindset to this idea of disability is culture, and they dismiss it, and that that in and of itself is a very harmful version of ableism. In the intro that I real, about your vision of a just world, C=can you talk a little bit more about what that might look like, maybe from from the perspective of of a disabled person like, what is it that you're striving for? To the World Society to to be like hopefully soon.

Toni Saia
Yeah, I mean, i'm looking for representation. I'm looking for leadership. I'm looking for Not only am I included, but I'm valued and welcome. I think, a lot of times we we frame disability in terms of inclusion, and I even have it in my in my vision. But the more important piece to that is for me is the the equity piece right? The equal opportunity and the equity piece, because I think again, inclusion doesn't always guarantee an equitable experience. So I want disabled people at the table. I want them leading the charge. I want it to get to a point where you can't, you know, name the 5 disabled people on on campus. And I want it to be that we're truly integrated in all aspects of the world and society. I want people to see more of the disability experience than just the diagnosis piece. I want places to embrace disability culture. I want to see my culture represented where I am. So that's kind of what I keep pushing for. I think right now, we're currently on a stage where we're still trying to — not in community, but I think especially academia — I think historically, we haven't been naming disability culture. So you know, people sometimes ask me why why are you writing conceptual pieces, right? And it's like because I need people to understand this concept. I can as a way to move forward.

Rachel Haine-Schlagel 
Well on behalf of all of your colleagues in the College of Education,  I am so glad you're here. I'm so glad you chose SDSU as the place for you to do all this important work, and we that may not be ready for you, but we are doing our best to be as welcoming and learning from you as we can.

Toni Saia
You may not be ready, butIi'm here either way. I'm happy to be here, and I'm just ready to keep pushing forward.