Diana Pastora Carson (00:15):
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 (01:08):
Hi everyone. And welcome back to Beyond Awareness: Disability Awareness That Matters. Today, I'm so excited to have Toni Saia, Dr. Toni Saia here with us. I am privileged to be able to work with her and learn from her and to be able to call her a friend. And we are gonna have a really wonderful discussion today on the topic of inspiration porn. And before we start, I'd like for you, Toni, welcome, I'd like for you to go ahead and introduce yourself, tell about who you are, what you're passionate about and, what makes you wanna talk about this today?
Dr. Toni Saia (01:55):
Thank you so much, Diana. I'm so happy to be here. Hello, everyone. As Diana mentioned, I'm Dr. Toni Saia. I'm an assistant professor at San Diego State University in the Department of Administration Rehabilitation and Post-Secondary Education. And I'm also the director of the Rehabilitation Technology certificate. I am a disabled woman. I am a wheelchair user. Much of my work in the applied fields has been bringing an understanding of disability that is more progressive and is more about disability as a culture and identity, and really centering the lived experience. So moving beyond the diagnosis to disability as a culture and identity. And so that is really tough work to do in a world that likes to limit our understanding of the disability experience to just purely a diagnosis. So I'm really excited to be in conversations that move us one step closer to a more, a deeper understanding of the disability experience, because I think there's a lot more to it than what we are being sold in society.
Dr. Toni Saia (03:08):
And so I always like to start these conversations with a great quote by a great activist, Stella young, disabled activist, who always says, disability doesn't make you exceptional, but examining what you think you know about it does. And that's why I like to be in these types of conversations, because I think we all get tons of information about disability, right? And we think we know many things, but my question is, are they coming from the disability community? And I think all of us, whether we're in the disability community or not, we're educators, professionals, we have to continually examine what we think we know, so we can move forward and do a better job of understanding the depth of the disability experience.
Diana Pastora Carson (03:53):
Thank you, Toni. And I will put a link to Stella Young's Ted talk, "I'm not your inspiration, thank you very much," which I believe is the title of her Ted talk. I'll make sure that that link goes in the show notes. Thank you for bringing her up because she's definitely somebody we wanna highlight here today. So to get us started, so often we as educators and families and people who wanna be sensitive and supportive, and who wanna make the world a kinder, gentler, more inclusive place; and as people who wanna be as inclusive as possible as educators, not only educators, but also as community members and within our diversity, equity, and inclusion endeavors or DEI work, we often do latch onto content, such as stories or memes or videos, that make us feel good about disability that give us goosebumps, you know, that make us feel warm and fuzzy on the inside, in some way or another.
Diana Pastora Carson (05:03):
And we may not be aware that by participating in what is termed as inspiration porn, we may be actually playing into ableist thinking. And then the worst part to me is that then we spread it to our friends and our colleagues on social media. But even worse is that we let it trickle down to our students and what we're trying to teach them through disability awareness, which should be focused in a completely other direction. So Toni, I would like for you to get us started with a definition, or what is inspiration porn for those who have not heard of that before?
Dr. Toni Saia (05:46):
So again, I, you know, I would be remiss not to mention the great Stella young who made her career on kind of defining this term and the way Stella defines it is the, you know, objectifying, disabled people for the benefit of nondisabled people, people without disabilities. And so Diana, one thing that struck me when you were speaking, right, you said they, these images, they make us feel warm and fuzzy, but my question is who do they make feel warm and fuzzy. And often that answer is, um, the nondisabled people, the people that are outside of the disability community, yes. They're not warm and fuzzy messages to the disability community and these messages. And I'm sure you've seen them memes that say, your excuse is invalid and they'll show a person with a physical disability. Right. And that's to send the message that if this person with said impairment can do this, then so can you. So that already sets this hierarchy, that positions disabled people lower, right?
Dr. Toni Saia (06:56):
The expectation is, well, that would be so difficult for them. So if they can do it, so can you. We've also seen this in the media a lot, especially around prom season. So we just got over prom season or around, you know, homecoming season. So that'll be coming up soon where you see, you know, classmate takes person with down syndrome to prom. My first question is, would that be a story in the news or an article or on social media, if there was no disabled person involved? Probably not. Because going to prom and homecoming is a pretty mundane activity, but in this case, right, of that headline, we're framing the the non-disabled person as like this, this kind individual that took this disabled person to prom, which then positions us as disabled people as less than, not worthy of being prom dates. So we need other people to take us to prom.
Dr. Toni Saia (08:01):
And, so we're positioned as like acts of kindness, right. And the idea is right, that we're not, we're not valued, right. So if you take us to prom, you must be a great individual. Right. And the problem with these is first of all, that reinforces a lot of stereotypes within the community. But the other issue is it frames disability in a very simplistic manner. That is that again is rooted in misconceptions and stereotypes. And it really doesn't get at the systemic barriers that disabled people face day in and day out. Right. It just frames these simple, these simple messages.
Diana Pastora Carson (08:45):
Yeah. And I love that example, Toni, and I know that there are people who are listening, who are thinking. But if that person, if that non-disabled student had not invited the disabled student to the homecoming dance or or to the prom, then they would've missed out on that opportunity. So what's wrong with that. And I think that where we go wrong is when we make this a, when we forget that the reason that they wouldn't have gone to prom or that the reason they wouldn't have gone to homecoming is because of systemic ableism, because of stereotypes, because of lack of inclusivity within our school systems.
Dr. Toni Saia (09:34):
Yeah. I think it's also because if, if they're not going to prom, first of all, I wanna say, Diana, we don't really know if they wouldn't go to prom. Maybe they do have other, you know, options, but if they don't, right, it's probably due to a lot of also internal devaluing. We get a lot of messages as disabled people that we are not worthy, we are not attractive. We are not the ones that people wanna take to prom. And the problem is right. There is nothing wrong with somebody wanting to go to prom with a disabled person. Right. There's nothing wrong with that. The problem is, is that when we're expecting a good deed out of that, right, because then that is a devaluing of one person to make another person look better. And again, the expectation is, well, if we didn't have a non-disabled savior, like a non-disabled student, it take us to the prom, then, you know, we wouldn't have that opportunity.
Dr. Toni Saia (10:32):
Um, and I think it's, it's really important that to recognize that that perpetuates that living without a disability as non-disabled is preferred. And then again, it harms the disability community, and it invalidates the disability experience. The other thing I think is important to question is why is this a news story? If you wanna take a non-disabled person to prom. I mean, if you wanna, I'm sorry, if you wanna take a disabled person to prom, why does that become a news story? And again, if you took disability out of it, that wouldn't be a story. Every time teenagers go to prom, do we see it in the news? I mean, not that I, not that I'm aware of, right? We might see like one, you know, one big, you know, newspaper article on, you know, prom season, but it's not singled out like that. So I think that that's the problem. And it's, and that's storyline, right. Is for the benefit of non-disabled people and to feel good about themself, like, look what we're doing for this community that we're devaluing and we're pitying. So now we're gonna take them to prom.
Diana Pastora Carson (11:51):
So what are some other ways that, or do you have some other examples? I know you said your excuse is invalid, which is a real popular one, and then the prom, are there some other examples that you can think of that?
Dr. Toni Saia (12:07):
Yes, I'm sure you've seen, um, these memes that say, uh, the only disability in life is a bad attitude. Okay. And this, and they often, again, they'll have this meme on social media, and then they'll try to display, um, disability in terms of a physical impairment. So, you know, maybe a wheelchair user, and then this text will come, you know, over it. And again, it says the only disability in life is a bad attitude, but again to quote Stella young again, and Diana will link the video, right? No amount of positive attitude is going to turn books into braille. And I think at that, or, you know, a stairs into a ramp. And I think those examples and why I wanted to take Stella Young's examples specifically is because they're so, they're so clear that in that example, we when we frame it, as only as a bad attitude, we are neglecting the systemic barriers that disabled people face, right? Because again, you, you could be the most positive person in the world, but as a disabled person in 2022, you are still mingling in a world that wasn't designed for you.
Dr. Toni Saia (13:26):
And that could be physically attitudinally, there's all types of barriers. And when we limit to our understanding of the disability experience to the only disability in life is a bad attitude. Not only are we invalidating the disability experience, but we're also ignoring systemic injustices. And the truth is that attitude. Yeah. It's important to be positive and yeah, you don't wanna walk around negative all the time, but that has really nothing to do with the disability experience. Everybody, regardless of disability is gonna have days where their attitude fluctuates. And so when you frame this again, it positions non-disabled people to see disability as tragic and to say, well, we also see it in these messages of like, it could be worse, right? When somebody shares their experiences and we frame things in the framework of it could be worse.
Dr. Toni Saia (14:28):
We're basically saying that the lives of disabled people, well, at least we're not that right. So again, we're positioning them lower. And so let me give you an example of inspiration porn in daily life as a wheelchair user. So the other, you know, couple months ago I was in the grocery store as a wheelchair user, right? Doing my thing, just going to the grocery store. Right? Which all of you listening have probably gone to the grocery store after work. Right? It's a pretty mundane activity. So I'm rolling down the aisles, minding my own business, and I'm in the can aisle. And I'm, you know, reaching up to grab a can of peas. And somebody walks by and says, you're so inspirational.
Dr. Toni Saia (15:19):
So on face value, that seems like a very positive, happy, well-intentioned comment. And while it was probably well-intentioned, it also sends the message that they really weren't expecting somebody like me to grab a can of peas. And the thing is, right, and this is what I always tell my students, right. Because whenever I talk about inspiration porn, my students always say, so, are you telling me that disabled people can't be inspirational? And no, that's not what I'm saying, but I'm asking you to think about the activity that you are labeling inspiration. And the reason why I'm saying this in relation to the story is me grabbing a can of peas at the grocery store at 6:00 PM, after after work is not inspirational. I don't know about all of you, but if you go to the grocery store, are people cheering you on? No. And the reason that is for you, that that's not happening is because they're expecting you to do it. But for the disability community our expectations are so much lowered that grabbing a can of peas is all of a sudden inspirational. So what I want you to think about before using this term inspirational, I want you to think about what activity are you naming inspirational. And if you took disability out of it, would this activity still be inspirational?
Dr. Toni Saia (16:58):
That's kinda my question, because, and that's what I want you to think about. I don't want you to take away from this conversation. Oh, disabled people can never be inspirational, right? That's not the case. Disabled people do inspirational things all the time, but are worthy of that word. I will say, in the disability community, that kind of the term inspiration, we try to stay away from it because it has so many negative connotations coming from non-disabled people, but I'm inspired by other disabled women all the time. Right? They represent my experience and I am very impressed, but I look at what, what is it that they're doing? It's not mundane activities that we're just not expecting disabled people to do.
Diana Pastora Carson (17:45):
What you said was perfect. Thank you, Toni. I loved it. Thank you. I think we all need to hear that. And I love the metric that you used. That's a great way for us to measure whether what we're saying is based in a respectful way of holding disability and double checking ourselves to see if what we're thinking, what we're saying is based in ableism.
Diana Pastora Carson (18:12):
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New Speaker (20:34):
How does this thinking that, you know, having people inspire us based solely on their disability and not on something else, you know, based on getting a canopies at the store at 6:00 PM, like you said, as a person with a disability, how does this thinking affect people with disabilities and the disability experience on the daily? You know, and, and how does it, how does it affect the lives of the disabled community as a whole?
Dr. Toni Saia (21:07):
I think that that's a great question. I think, again, those experiences continually frame disability in a very simplistic way, and that ignores the injustices that we may face everyday, the attitudinal barriers, the physical barriers, that simplifies it to a point that it gets to invalidating. So it could be very invalidating to somebody's identity and experience. The other thing I would think, I want all of you to think about as listeners. I mean, could you imagine if you're going to the store, right, because I just shared a very isolated incident. But this happens frequently. So could you imagine if you were just going about your day and constantly people are just like, you're so inspirational. You're so inspirational. You're so inspirational. How would you feel that? I mean it's, and so it sends me the message that, you know, first of all, A) I don't exist as a disabled woman to inspire others.
Dr. Toni Saia (22:08):
Right? I exist to do my own thing and to make my own moves in this world. Right? I shouldn't my body, shouldn't just be a constant reminder that things could be worse. And that's kind of tied to a previous comment that I shared, right. I should be valued for all the other contributions I bring to this world. It shouldn't be simplified to me getting a can of peas at the grocery store. And so I think that it limits our understanding of the value and the assets of the disability community when we're constantly framing them as inspirational for doing mundane activities. That's the problem. That's the real problem. And I think, again, it comes to a lot of, it comes from a couple things for me. I think one, it comes from a devaluing of disabled people, so we're not expecting them,
Dr. Toni Saia (23:05):
so whatever they do is inspirational because we're not, we already devalue them. The other thing I think it comes from is lowered expectations. Whether we intentionally or unintentionally are doing this, we as a society have lowered expectations for disabled people. I remember when I moved across country, so I'm from New York and I moved to go to school. I moved across country about 3,000 miles away to go to Arizona and yeah. Was that difficult? Absolutely. It was the first time I was away for home and I was going 3,000 miles away. But I remember people talking about and sharing with my family. She's so inspirational for going that far away, you know, from home for school. Right. And it's like, but people go away to school all the time and it's not inspirational, but because the expectation that me, as a wheelchair user, is doing this. I mean, it's not expected. So then we frame it as inspirational instead of the fact that I'm a first generation college student. That is very inspirational that I was able to go, right. Because my family didn't have those opportunities. Right. That should be the inspirational piece of it. But instead it was, she's so inspirational for going 3,000 miles away to school be because she's disabled.
Diana Pastora Carson (24:40):
Yeah. And, and in our mind, inherently, because you are disabled, you don't have that ability or shouldn't have that opportunity as opposed to, it's extraordinary that she is doing this because we have created a community, a society where everybody's included, which we haven't yet, and there's still so many barriers. But what I'm trying to say is that people are quick to exclude that possibility for people with disabilities, and not quick to look at what the barriers are for people being successful in doing those kinds of activities that everybody's doing.
Dr. Toni Saia (25:22):
Yes. And I will tell you was college difficult for me? Absolutely. But not because I am a disabled woman as an identity, but because of the barriers that I faced as a disabled wheelchair user, and I'm just saying that because with a physical impairment, the barriers are often structural, right. Not having access to, to all the spaces, not every places having ramps or curb cuts. Right? And this is in 2022: 32 years after the passage of the American with Disabilities Act. Right? And I guess when I went to college, it was, but these barriers still exist, whether I'm in college, or whether I'm in society today. So I think it's really important to think about. And I think again, when we, when we frame disabled people, as, you know, as, they got to go to prom, that's very limiting to our experience.
Dr. Toni Saia (26:22):
So I think that one thing I would think about is first of all, as educators, where are you getting your information about disability from? Because a lot of the stories that are out there in the media and on social media, more often than not, are from a non-disabled perspective, just talking about disability. Right? And so that really limits the perspective because let me tell you something knowledge about disability and the lived experience are two different things. You can be an expert in this or that, or you could be the best special education teacher, or the best educator on the planet, but that does not mean that that's the same thing as the lived experience. The lived experience brings a nuance and understanding to the disability experience that when non-disabled people continue to write about disability, they miss the boat.
Diana Pastora Carson (27:22):
Yeah. I always say I got my master's in special education, and I knew a lot about disabilities, but it wasn't, but it was when I started learning about the experience of disability that my world was upended. And when I realized that we needed to change our focus, that there were other things that we needed to be focused on that were related to societal barriers and ableism and start focusing on how we can create access and equity in our school systems, and in our communities in general.
Dr. Toni Saia (28:02):
Yeah. And I think just one other example that we see frequently is a lot with children. So you'll see these things like child walks for the first time, right? (Diana: Mm, yes.) Or child hears for the first time and what that sends the message to the disability community is that we are not okay as is unless we're achieving these things. And I'll be honest. We have such a fixation on walking. And that's the least of my concerns as a wheelchair user. I care so much less about walking than I do about, can I access a space? Can I fully participate? And I think again, when we send these messages and we inspiration like child walks for the first time, it sends the message that disabled people are kind of sitting home, just waiting to walk for the first time.
Dr. Toni Saia (28:58):
And that might be true for some folks. But again, when we laser in on these stories, we make a lot of overgeneralizations about the largest growing minority group that you could age into at any point in the United States. So the thing is is that I won't take away somebody's story, but I think when we use those stories to over generalize to an entire population, that is a problem because the disability experience is not a monolith, right. We all experience it very differently. And so when we, when we send these messages, again, that might send the message to people that me as a wheelchair user, I can't live my life cuz I'm just, you know, know, waiting to walk. And there's a whole lot more I would worry about in society before walking. And I think that that's an important message to hear.
Diana Pastora Carson (29:54):
Yeah. Thank you. Thank you, Toni. So what are some alternatives? What are some things that in schools that students should be hearing that students should be knowing?
Dr. Toni Saia (30:07):
Yeah. So first of all, in schools, we gotta talk about disability. It doesn't get enough attention like other aspects of diversity do. We don't talk about it. And if we do, it's very heavy on the diagnosis. And a diagnosis is one piece of the, you know, the experience, but it's not the whole thing. And so we gotta, we gotta first of all, we gotta talk about it. And we gotta talk about it in a nuanced way, from the perspectives of the disability community. We got, we gotta seek ways to bring in disabled narratives, disabled experience, videos. We have to do it because it's, it's missing. We have to understand the importance of how we talk about disability. Those are things I think that chip away at these larger misconceptions about the disability experience. If we are not talking about it, we send children a message very early on that disability is tragic and pitiful and is taboo.
Dr. Toni Saia (31:14):
So then you could imagine as they grow up and then they enter my classroom as, as graduate students, they have a lot of, and this is not every student, right? I'm talking systemically, they have a lot of misconceptions about the disability experience because it wasn't talked about. Even me as a disabled person, right? I did not come out of the womb with a disability culture and a disability history book. I had to seek that out. And I think that in 2022, that's a problem. I think us as educators have to find ways that we bring disability culture and disability as diversity into the classroom. Do your books naturally infuse disability. Are there characters with disabilities? And not everything has to be a lesson, but we have to have the information available. I remember when I was in school, I didn't see any characters or any representation of myself as a wheelchair user.
Dr. Toni Saia (32:19):
I actually just had a conversation with someone and we were talking about our school experiences. And I was mainstreamed into general education. But they asked me, but what was your disability experience like? And I said, I was like I was just an accommodation. People were just talking about me in terms of my diagnosis. They didn't see the value that I brought as a disabled person. They just talked about my disability as something that was my diagnosis. And so of course, I internalized that and I didn't see my disability as part of my identity, because for so often, that wasn't talked about. I mean, I remember people saying, I don't see you as disabled, which is another example, right? That sounds like a compliment to most of you, right? You might be thinking well, that's, that's really nice. But that's only if you inherently believe that disability is a bad thing, because if you didn't think it was a bad thing, why would you say, I don't see you as disabled?
Dr. Toni Saia (33:29):
And let me tell you something, people, all the time say that to me, I don't see you as disabled. And that is the biggest invalidation to my identity as a disabled woman. Think about other identities that you hold, cultural experiences that you hold. Could you imagine people saying to you, I don't see you as X, whatever that is. And that could be very invalidating. So again, another phrase that seems like a really nice compliment and, you know, I wanna be clear that most of this may happen unintentionally, right? You're not paying attention to your, you know, words, or you're not thinking about the ramifications of your words. But now that you know, I want you to be more critical in what you say and how you talk about disability because again, if we didn't think disability was a bad thing, we wouldn't, there would be no storyline. Girl, you know, prom queen brings disabled person a prompt. That wouldn't be a storyline because disability wouldn't inherently be a bad thing. They're surprised that I got peas from the can aisle, because they're assuming that my situation is so bad. How could she even know she wants peas?
Diana Pastora Carson (34:52):
why would she even wanna get out of bed in the morning?
Dr. Toni Saia (34:56):
Yeah. Things like good to see you out, right?
New Speaker (34:59):
Yeah. Yeah.
New Speaker (35:00):
That's not a compliment.
Dr. Toni Saia (35:02):
Right. That means that you're not expecting somebody like me, somebody that looks like me, that my body that would be out. So although it might be well-intentioned on your end...Again, I would encourage you to think about this, the difference between intention and impact. And in everything you do for the next couple of weeks, think about your intention and what is the impact. It's kinda like if you bump into somebody, right, you didn't intend to do it, but you may have, you may have hurt them. So it's important to recognize the impact. And the impact of your language and ideas and how you think about disability, what, you know, whether you meant it or not, the intention, you know, could be very detrimental to the community. And so I think that's an important thing to kind of keep in mind. Or when you're questioning, you know, is this ableist thinking, think in your mind, this is my intention, what's the impact?
Dr. Toni Saia (36:04):
And I think that that's an important piece, and I see this a lot in education. We look for fun ways to say the word disability, without saying the word disability, like differently-abled, handi-capable dis, and big ABILITY. I'm sure we've seen these things. I think it's important, if we can't even say the word, it sends messages about who we value and how we position disabled people. And that's how we get to inspiration porn is a subset of this, right. Of how we, how we value the disability community. Right. If we can't even say the words and we're coming up with other words, when we mean disability, that sends us a lot of messages. So I think it's important to think about. The goal of this is not to feel bad about yourself and not move forward. Right? The goal of this is to just be aware of these topics and, and think about what you can do.
Dr. Toni Saia (37:06):
And I always say to people it's important to fail forward. We gotta be doing something. Because if we get so bogged down on, oh, I said this wrong, I didn't do this right. We don't, we're not moving forward. And so we're all guilty of a lot of the things I share today, and we all have to do better, right? Because we're all mingling in a very ableist society. And it's all of our jobs to make small, small leaps and for some bigger leaps forward. And so I encourage you all to sit with this information and think about some low-hanging fruit. You can adjust to help, you know, move, move these conversations forward.
Diana Pastora Carson (37:46):
Dr. Toni Saia. This was amazing. Thank you so much for being with us here today and sharing your wisdom and your insight, your perspective. I really hope people take you up on that and think about, critically think about, what we say, you know, what was the intention versus the impact.
Dr. Toni Saia (38:07):
Thank you so much, Diana, for having me.
Diana Pastora Carson (38:12):
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.
