Session (3 of 3): Disability Research: Why it Matters
Interview with Toni Saia

Toni Saia was born and raised in Staten Island, New York but decided to give life in the desert a try. She is a PhD student at the University of Arizona studying Counseling Education and Supervision. She currently works at DIRECT Center for Independence as the Community Action Coordinator, where her goal is to remove systemic barriers and ensure people with disabilities can fully participate in their community. Additionally, she is one of the co-founders Chapter Chair of Arizona ADAPT, Arizona’s first ADAPT chapter. Her vision is of a just world … where people with disabilities have equal opportunity to participate fully in all aspects of life… where communities are barrier-free and access is universal… where discrimination is unthinkable.

GEMAR NELOMS: is a Senior Technical Assistance Consultant with American Institutes for Research, which houses the Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR). She is active in AIR’s network of disability-oriented researchers and technical assistance providers and her KTDRR colleagues welcome her contributions to this webcast series. Her portfolio of work focuses on disability services, career readiness, secondary and postsecondary education and public health. She leads research and evidence-based technical assistance efforts with states and nonprofit organizations and develops tools and resources to enhance their organizational and program capacity. Prior to AIR, Ms. Neloms’ work in the disability field has included the oversight, implementation and scaling of the National Collaborative on Workforce and Disability for Youth’s professional development modules for youth and workforce development professionals and the provision of youth development programs for all youth, including youth with disabilities.

Listen to Toni's interview podcast

GEMAR NELOMS: Welcome to all of you who have tuned in today. My name's, GeMar Neloms and I'm with the Center on Knowledge Translation for Disability and Rehabilitation Research at the American Institutes for Research. And today we're speaking with, Toni Saia, a community action coordinator for a private nonprofit organization that's operated by and for people with disabilities. And it's part of the National Network of Centers for Independent Living.

Toni is pursuing her PhD as well in counseling education and supervision. And today we'll continue the conversation about disability research and why it matters. So Toni we're really glad that you've joined us today. Welcome.

TONI SAIA: Thank you so much. Thanks for having me.

GEMAR NELOMS: So we always start off with asking folks if they would share a little bit about themselves, and some of the key areas both professionally and personally where research plays a role for you.

TONI SAIA: Well, I think of course as a PhD student research is kind of always lingering. Research is how we advance the field and how we inform decisions that we make for the field. So in that sense research is part of my everyday life. But I think research is also important as a member of the disability community, because I think again research helps inform and make decisions. And I think the more research is done, the more access parents of children with disabilities, people with disabilities, allies-- then we'll have information about the disability experience.

So I think research continues to keep the disability community afloat, and to advance and continue, and kind of learn. And I don't think research always has to be-- the goal doesn't have to be cure, but the goal has to be what can we do and what can we do better then what we're doing right now? So--

GEMAR NELOMS: Talk a little bit more about that. So you mentioned some of the roles is that it provides information, it's provides access, it create allies, or can help also provide knowledge for our allies. Can you talk a little bit more about that, or maybe even provide one or two examples of how that's played out for you?

TONI SAIA: I think historically a lot of people with disabilities weren't a part of research. We were kind of people that were-- we didn't really have a voice at the table when it came to research. But I think for example, I do a lot of research on active learning techniques for people with disabilities, and universal design. So not just creating an accommodation for the person with a disability, but creating your learning space to accommodate all.

So for example, in the classes that I teach none of my exams are timed, because I don't want a student with a disability to have a different experience, or have to go somewhere else to take the exam. So I have all the exams untimed so that every student, regardless of disability or ability, can have the same opportunity and experience. And I think if it wasn't for people doing research on universal designing and designing things beyond the individual level, I don't think I would be able to implement that in the classroom environment.

GEMAR NELOMS: Excellent. Very helpful. And so let's move from that setting back to the setting you mentioned earlier, being a PhD candidate. How if anyway does your approach to research for that purpose differ than for the example that you just provided us, if it does differ?

TONI SAIA: So even as a person with a disability, I'm not going to come into my interview and be like, no actually that's not the way it goes. I trust that my interviewee has the experience and even if it differs from mine. And I think a lot of times that’s why people with disabilities are excluded from research, because we have professionals that want to tell people with disabilities what it's like to have a disability. And they don't understand the experience.

And so I think I tend to make sure that my research methods and what I'm doing is consistent for all people. So for example, if I am interviewing somebody that uses a wheelchair I will not do a two hour interview. Because I've already considered that they might need to weight shift, and so if they have to weight shift in the middle of my interview, how is that going to make them feel? It's going to change the dynamic of the relationship, because now in the middle of the interview you have to go. And then by the time you come back who knows if you remember what you talked about, or the feelings associated with it.

So I always-- I mean, that's just one example. But I'm considering the needs at the forefront. And I think that's what's lacking a lot of the time, is that when a person with a disability is being interviewed but is part of research, a lot of the time it's like, oh let me meet Toni or figure it out, and then we can make accommodations. Instead of thinking about disability at the forefront. And this way my interviewee doesn't even have to say, "You know, Toni, I'm not going to be able to do that interview because it's too long for me to sit in my chair or one sitting.

GEMAR NELOMS: So you just mentioned quite a few distinct things that researchers could actually consider and use slightly differently than how they may in fact be doing it now. Is there anything else that you think researchers keep in mind, whether it's something that they should keep doing because it works from a disability research perspective, or that they should either be differently like some of the strategies that you just mentioned?

TONI SAIA: So first I want to say I think language is super important. I think how the person discusses disability is going to make the interviewee feel comfortable or uncomfortable. So for example, for me as a disabled person, I identify as a disabled person. So I am using not person first language. Which is everything that we hear in research. Oh you must use person first language. And I'm not saying person first language is bad, but if you see a person with a disability and they are using language like "disabled woman," they shouldn't be corrected in their own interview.

Because for example I use disabled woman as an identifier, as a political identity. So I'm not just willy-nilly using it. I'm using it to telling you that disability is part of my identity and something that I'm proud of. That doesn't need to be separate from-- I'm not saying everybody has that experience. But I think sometimes in research we put language on other people, and that sways their-- what they have to say. And when I've been interviewed for things, I'm very turned off when somebody is telling me how to describe my experience. Whether it's right or wrong, I mean it's mine.

And so-- one thing I think that we do very well, which we should continue to do is get information from the person with a disability. Stop going outside to find the information the person with the experience has the information. And I think we do that well. I think-- especially in the last 10 or 15 years-- I think we're doing a lot better actually getting individuals with disabilities to describe their experience, opposed to interviewing a principal of an elementary school to say, "How do people with disabilities fit in your program?" It's like, of course he's going to tell you they fit. Because if he didn't, then we would say you're discriminating. So of course, he's going to say, "Oh, yeah. They fit perfectly." So I think that's what we're doing well.

GEMAR NELOMS: Great. Oh, that's excellent. And so thinking about that from both-- you have this researcher hat, which is not every person's hat. And then that you have your professional hat, and it sounds like sometimes the two meet. Where would you recommend people go to actually get research, to find quality research, to find the type of research that you're talking about, so that whether it's legitimate or it's something that they know they can use or feel comfortable using, what would you recommend to people?

TONI SAIA: So number one, I think to be in the right environment. So sometimes I think we focus a lot on interviews, but the people are never in the right environment. So if you're going to do research in schools and how disability plays a role, you need to be in the school to see how it plays out. Another thing I think is lean on your organizations like Centers for Independent Living who serve to provide services to not just one person with a disability, but to all disabilities. Not just people with visual impairments, not just people that are deaf, people with all types of disabilities.

Because I think that's what also happens in research. We're so boxed into this criteria, which we find out information that's only pertinent to one group. And then we can't really generalize it to everything. While I still think that information is important, I think that we need to widen our criterion base. And to do that you need resources. And Centers for Independent Living serves everybody. I mean they serve people that self-identify. We don't ask for documentation. And I think that that's also a nice thing, because now we're looking at you. We don't really care what your diagnosis is.

And I think that's a great resource for a lot of researchers, and a lot of researchers just don't really go in the community. They stay where they are-- like at my university, a lot of research happens at the University. We're hardly ever in the community. And it's like you said about higher education. Higher education experiences of a person with a disability is going to be wildly different from a person with a disability in the community. There doing different things. So I think sometimes we have to expand our higher education bubble. Although I think our bubble is nice, I think we need to expand because we're missing a whole lot of people. Being in the environment I think is key.

GEMAR NELOMS: Excellent. So this is incredibly helpful. We're hoping it's helpful for folks who are both researchers and those who are non-researchers. But before we conclude, is there anything else that you would want to point out about why disability matters. Particularly disability research. Why disability research matters? Why it's important? How whether we're a researcher or a non-researcher, how we can or should use it? Particularly from a disability rights perspective, an advocacy perspective, an activist perspective.

TONI SAIA: It's important because we need to be the advocates. And so if we are not informed, even if we're not the ones doing the research-- and it doesn't always mean doing something like a protest-- but we need to be advocates. We need to be a voice at that table. And the only way we're going to be a voice at that table is if we're doing things and we're staying up to par. Nobody wants the toy from ToysRUs that's 10 years old. Everyone wants the one that's coming out. And so we need to stay at the table and we need not to be afraid to share our opinions and say when things are wrong.

So I think a lot of times with disability we accept anything because we're just so happy to be a part of the conversation. And we're not likely to advocate and say you know what your language is really offending me. And so we need to be the advocate and be that voice, because there are people that do not have their voice for a variety of different circumstances. And we need not to be afraid to be advocates. And I think that that's the bottom line in any role. You're a teacher, you’re a researcher, or you’re students. We need-- it doesn't matter if you have a disability experience or not-- we need to advocate. And if we don't advocate, nobody else will.

GEMAR NELOMS: Toni, on that note, we want to thank you so much for being able to join us today. And we're really glad that you've been able to provide insight and your perspective to this issue. Thank you so much.

TONI SAIA: Thank you very much. I appreciate the opportunity.

GEMAR NELOMS: Thank you to everyone for attending this video cast and our series on Disability Research-- Why it Matters. After you've viewed all three discussions in the series, we encourage you to fill out an evaluation form by following the link at the bottom of the slide. We'll email it to all who registered and you will also be able to find this link on our webcast information pages at www.ktdrr.org. As you know, this evacuation centers to help us plan our future events.

In addition, you may also ask your questions to our presenters in this series. And please be sure to include your email address if you would like to directly receive responses back to your questions.

Before we close, we'd like to thank the National Institute on Disability, Independent Living, and Rehabilitation Research, also known as NIDILRR, for supporting our activities in these video, webcasts, and other events.

Disclaimer:
The contents of these interviews were developed under grant number 90DP0027 from the National Institute on Disability, Independent Living, and Rehabilitation Research. NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of these interviews do not necessarily represent the policy of the Center on KTDRR, American Institutes for Research, NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.

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