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, and welcome back to Beyond Awareness: Disability Awareness That Matters. I want to especially welcome our guest, Dr. Sara Acevedo. I am a big fan of Dr. Acevedo. Not only is she an extraordinary teacher and activist, she also has been such a support for my work via her students, many of whom have helped me with my Beyond Awareness work and with putting together this podcast. So, Sara, welcome. Can you please introduce yourself to our listeners? Who are you? How do you identify? What do you do and what are you passionate about?
Dr. Sara Acevedo:
Thank you so much, Diana, for having me in your podcast. It's a pleasure to join you today. We've been working together for a while, but this is the first time we actually meet, virtually, because we're far away from each other. I am in Cincinnati. I teach at Miami University in the Disability Studies program. I'm assistant professor in the program, in the minor. I don't, it's always difficult for me to to introduce myself because, you know, positioning oneself is always difficult depending, and it depends on context. But I always begin by saying that I am Mestiza. I was born and raised in Colombia. And I also always say that I'm autistic, proudly autistic, which is, saying that I am proudly autistic incurs, a lot of privilege. There are a lot of people who cannot say that they're proudly autistic and remain safe, preserve their physical, emotional, and psychological, spiritual integrity.
Dr. Sara Acevedo:
I have a ladder of privilege. I pass, or can pass, as white until I open my mouth and start speaking. Then things change. And I can, of course, use that privilege to open up spaces where I have access to which other people don't have access to open these spaces up for people to share their own voices, and their own stories, and their own initiatives, and struggles for liberation. So it is a pathway. I don't speak for anybody. I bring the stories that are told by disabled people themselves and I'm honored to do so in collaboration with disabled activists and practitioners on the ground. So I am a scholar activist. This is kind of the best way that I can identify to speak of my work at the borderlands. Speaking you know, mentioning Gloria Anzaldua, and speaking of, you know, so Patricia Hill Collins and threading those borders. The borders of the academy and the borders of practitioner communities and struggling for collective liberation.
Dr. Sara Acevedo:
So I thread both worlds. I don't quite belong in either of them, right? When I'm on the ground, which organizing with fellow disabled activists, especially with disability justice activists, I still occupy this researcher persona, right? I still have that privilege that doesn't go away because I'm organizing with disability justice activists, that doesn't disappear. And when I'm, you know, within the institution, I don't quite belong in there because I occupy these spaces where my identities are often erased, where my work is often rendered invisible. So it is an interesting position, you know, this space of liminality with where a lot of things can happen. There's a lot of possibility and there's also a lot of uncertainty and those spaces aren't difficult to navigate. Sorry, aren't easy to navigate, so I guess that's a very, very long answer to your question.
Diana Pastora Carson:
Well, thank you Sara, I think it gives our listeners a pretty clear idea of who you are and what you're passionate about. Definitely.
Dr. Sara Acevedo:
Mm-hmm .
Diana Pastora Carson:
Thank you.
Dr. Sara Acevedo:
Yeah.
Diana Pastora Carson:
So as you know, this podcast is merely geared toward educators and families who have an interest in diversity, equity, inclusion, access work, and disability awareness, kind of a key word, but they want to understand more about what is appropriate and what isn't. And so I like to use a Disability Studies in Education framework to help ground people.
Dr. Sara Acevedo:
mm-hmm .
Diana Pastora Carson:
And there is a lot of basic discussion in education about what the right language to use is.
Dr. Sara Acevedo:
mm-hmm
Diana Pastora Carson:
Should we be using person first, or should we be using identity first? What's most respectful?
Dr. Sara Acevedo:
Mm-hmm .
Diana Pastora Carson:
I would love if you could just give us your thoughts on this. What is the evolution of language as it correlates to disability history and current movements?
Dr. Sara Acevedo:
Of course, and this is something that is a topic that's recurrent in class with my students. It's something that I always teach, it's something that always comes up. You know, I teach Disability Allies and Activists, which is the course that you and I have collaborated on and where my students, you know, support different activist projects and scholarly activist projects. And language is always a topic of interest. And I teach students in the applied professions. And so they come with certain ideas and certain vocabularies and, of course, terminology from their own disciplines of study. And it is part of our history, right? As Simi Linton has so eloquently shared with us through her work and especially Claiming Disability: Knowledge and Identity, and how we have struggled, right? Over this battle, over meaning, disabled people and applied professionals and professionals in general, struggling over who has the power to name, and who has the power to name disability.
Dr. Sara Acevedo:
And because our histories, you know, have been both of oppression and of resistance to oppression the way in which we are represented and thus treated has always been a political matter. And, you know, when identities are contested, they're always political. So it's been difficult to change perceptions of disability that are filtered through the expert persona, the expert lens. And there has always been an idea and an understanding of disability as something negative, as something that must be either removed, or cured, or prostheticized, or hidden, or otherwise eliminated, right, in the worst most nefarious cases. So associating disability with a human, it has been seen through professional lenses as dehumanizing. So, removing the language of disability from a person has been our goal, right? As observed through that lens because the histories of disability have been associated with dehumanizing spaces, such as alms houses and poor houses and asylums and spaces that were supposed to, serve as, quote unquote, rehabilitation spaces,
Dr. Sara Acevedo:
that then turn into spaces where disabled people were stripped of their humanity and neglected and abused.This idea of reclaiming humanity and reclaiming personhood is really still something that resonates with professionals very strongly. And this has a lot to do with the fact that our struggles for our activism, our resistance, our cultural production, the ways in which we live our lives joyfully, and understanding disability as culture, are permanently erased. So our lives are constantly seen through this tragedy, you know, tragic lens and still completely associated through histories of dehumanization, that then it becomes that disabled people cannot be associated with disability. And so the person-first language, for example, "Sara has autism" because I'm an autistic person is something that professionals will often tell families to use and others to use because you have to see the person first, right, rather than their disability.
Dr. Sara Acevedo:
And this is an idea that understands disability again, as a deficit, as a lack, right, as something to strip away. Activists in the sixties, and of course, times leading to the struggles of the sixties in the hails of other civil rights struggles, were reclaiming this humanity, right, were reclaiming humanity. That was the time where the institutionalization was, you know, still a fresh occurrence coming out of the 50's and people were still reclaiming their identity as human beings. So person first language was important, at that time, where our humanity was not being recognized. We were still fighting for basic rights, civil rights, right? So, I write in a piece that I have about person-first language and identity-first language that language use is a matter of history and it cannot be decontextualized. And so debating language outside of context has that problem.
Dr. Sara Acevedo:
And so saying that you have to use person-first language because you have to put the person first doesn't really contextualize our history, doesn't really speak to disability history, and in that sense, doesn't really speak to our own agency and autonomy to decide what language suits us better. And it is of course, a theme and a topic that we don't all agree with. We all have very different perspectives. We are not a one disability community, we are many disability communities and we don't, contrary to what people would think, we don't all know each other. We don't all share the same ideas. And we have polarizing understandings of things and that's just part of who we are, you know, and I've always thought and said that that actually breaks the powers or the structures that would want disability to be a monolith. We aren't monolithic.
Dr. Sara Acevedo:
So, I love that we are so different and that we think so differently about language because that really defeats that impulse to want to assimilate us to one another because that makes it easier, also, to control us. So, at that time, person-first language was really important. Then, you know, with the perspective of, and that, sorry, that is also very much associated with the dominance of the medical model of disability that is still prevalent, of course, but at the time, right, associating disability with a lack of humanity or, quote unquote, subhumanity, had a lot to do with scientific and medical ideas of embodiment. So, the medical model thinks of disability as an individual lack, incapacity, deficit for which only the individual is responsible. And so, it is in other words, inherent to the individual. And this is, of course, a very deterministic understanding of disability.
Dr. Sara Acevedo:
On the other hand, there is this social perspective of disability, which was first goal, the social perspective of disability by activists in the 80's, Vic Finkelstein, and others associated with the British disability rights movement, who spoke about this social perspective of disability, which then turned the lens on the focus onto the institutions, social practices and interactions that we're disabling. And so the focus turned onto a process, a process that they call a process of disablement. So disabling institutions, disabling interactions, disabling policies, disabling environments. So then this perspective was the social perspective that UPIS called it, was then, you know, turned fancy by disabled sociologists Colin Barnes and Mike Oliver and other people after them. But this whole idea was discussed as a process, as opposed to an inherent individual flaw. It was explained in terms of a social process, a social process of disablement.
Dr. Sara Acevedo:
So, focusing on that understanding, activists started thinking about language in a different way. The autistic movement of the 90's in the United States, took on the social model of disability, which was first the social perspective, became a fancy term through scholarship, the social model of disability as an analytic, and took that perspective to say, we are not flawed. We are not deficient. We don't lack. We simply are not. This world was not made for us. The world as it is, is disabling to us. So in that sense, the movement adopted identity-first language, because it was pointing specifically to the structures, social practices, policies, and interactions that disable different ways of being in the world, that were disabling, if that makes sense. And excluded, and stigmatized, and medicalized, and pathologized other ways of being in the world. And then, those forms of being in the world became an identity, an affinity group, people struggling for recognition, not only recognition because that stays within a rights framework, but for liberation, for a right to tell our own stories, narrate our own histories, you know, and all just different ways of representing ourselves and reclaiming our own cultural spaces from the hands of professionals
Dr. Sara Acevedo:
and often parents because parents have been informed by professionals and siblings. Yeah. There is an excellent book that is called Sometimes Allies. I'm not remembering the whole book, but it's by Allison Carey, Pamela Block, and Richard Scotch. And it's an excellent book. It talks about these issues and they're all siblings and talking about these obstacles that parents and siblings, and allies can sometimes represent for disabled people who are still reclaiming our voices, and are dealing with this process of mediation. I always speak about this mediation that we have to navigate our relationships, our ways of being, our autonomy, our right to decisions that involve our bodies, so bodily autonomy, we always have to kind of wrestle from our supporters, our siblings, our guardians, our parents, our friends, our allies. And obviously, the context again is important because these are people who fight with the best intentions for us, but not with us.
Dr. Sara Acevedo:
And that is a big difference between a rights framework, we'll fight for you, we will advocate for you, and a disability justice framework, which is focused on collaboration, solidarity, reciprocity, and horizontal organizing. So, basically not a top down model, but actually a bottom up grassroots. Like Leah Lakshmi Piepzna-Samarasinha speaks of "care networks" that are created within the community, and soar and thrive in the community. So, there is no need or desire to negotiate with government, "Oh please recognize me as a human and grant me rights," if that makes sense. But it is actually a communal effort of caring for one another, of knowing each others humanity at play.
Diana Pastora Carson:
Right.
Dr. Sara Acevedo:
So, a rights framework focuses on legislation, policy, reform, and it has to do with this negotiation with state. Whereas disability justice is a framework for liberation, that is not a single issue politics because it doesn't only focus on disability, which rights frameworks do focus on one single issue, the rights of disabled people. Whereas disability justice focuses on the justice for disabled people living at the intersection of other oppressed identities, along the lines of race, class, sexuality, gender identity, gender expression, citizenship status, religious affiliation, so on and so forth.
Dr. Sara Acevedo:
And the principles are primarily rooted in anti-capitalism, decolonization, our fight against white supremacy. It's just the sustainability and the leadership of the most impacted by these systems. And these movements themselves, like these various disability justice initiatives, are led and created by disabled people of color, living at the intersection of other marginalized identities. So disabled BIPOC. And Sins Invalid are the forerunners of disability justice. Sins Invalid is a troop of performance artists of color who center gender-nonconforming experiences, and they're wonderful. They're based in Berkeley. Well, they're mostly now spread out, but Patty Berne, Leroy Moore, Leah Lakshmi Piepzna-Samarasinha, Eli Clare, Mia Mingus, Alice Wong is not part of Sins Invalid, but a collaborator with Disability Visibility Project, and many other people who really have contributed to the growth of a movement that focuses on community collaboration, and really focusing on cultivating solidarity, mutuality, reciprocity, and care for one another in ways that state and government do not care for us.
Diana Pastora Carson:
Yeah. Oh, wow. Sara, thank you so much for really encapsulating how the language and the mindset, the framing of disability, all connects to the disability rights movement, our history, culturally and politically, are so ingrained with how we phrase, I mean, just the basic, how we speak about disability, what we say, and also educating us about what is at the helm of the disability justice movement and, you know, disability rights are important, right? And we've,
Dr. Sara Acevedo:
Absolutely.
Diana Pastora Carson:
those are a foundation, we didn't have those, and that's so extraordinary that because people did connect and people of diverse disability experiences came together.
Dr. Sara Acevedo:
Yes.
Diana Pastora Carson:
For that fight. And now there is this, okay, let's look at how equitable disability rights have been to the most marginalized intersections of our community.
Dr. Sara Acevedo:
Mm-hmm
Diana Pastora Carson:
How oppression is more heavily impacting on certain communities than others. And how can we work together? And I also thank you for letting our audience know about Sins Invalid, which is at the foundation of the disability justice movement. And we did have Leroy Moore on here.
Dr. Sara Acevedo:
Well, that's great.
Diana Pastora Carson:
Yeah. Wonderful friend and activist as well.
Dr. Sara Acevedo:
Yeah, I apologize first, because I was not very clear when I spoke of the social model of disability. It's always a difficult transition to explain because there's a lot of economic analysis there that I am not gonna get into. And so I get a little tripped up, when I talk about it because I'm living a whole part of it out, so that I can explain it in terms that are more simple, so I apologize for that. And also yes, disability rights, you know, the 504 Sit-Ins was a whole example of cross disability collaboration as well as cross movement solidarity, the Black Panthers were instrumental to the survival of protestors who were occupying the building, the capitol, for 27 days, 28 days. They were bringing food, they were providing childcare, they were trying to get essential medication and things that were important or essential for the survival of the protestors.
Dr. Sara Acevedo:
So, it's difficult to speak of the disability rights movement as something that wasn't it, right? That wasn't encompassing of all of the different aspects of the disability experience. And it's important to discuss that it was an opening to disability politics and that disability politics has evolved, and that these two movements are different. One doesn't emerge out of the other, one doesn't follow the other, they're just different trajectories and they have both contributed enormously to disability politics. And yeah, so I just wanna explain that, but there's the big difference between the two and it's important to recognize that.
Diana Pastora Carson:
Thank you. All right. One last question. What's the most important thing from your heart that you would wanna say to educators and families to make a difference in alignment with allyship?
Dr. Sara Acevedo:
Okay, I'll respond to that question with an anecdote. The other day I was having conversation with someone and they said, "Well, how does autism manifest for you? Because I have a cousin with autism." And I said, "You mean you have a cousin who's autistic." And they said, "Oh, but I have a, uh, friend, I think it was, who's a music therapist. And she said that we should always use person-first language when addressing disabled people and especially when referring to autism." And I said, well , and this is just an occurrence. You know, it's so typical, and so common for me that it's exhausting. And we are at a time where we have been present for a long time now. We have been vocal. We have so much material out there that can be accessed by nondisabled people that, what I would say is, it is time.
Dr. Sara Acevedo:
It is high time to engage with disability lived experience, with first person narrative, with our own own way of identifying ourselves because it is out there. We have put work into this. So, it is late for professionals to still hold on to their own beliefs and understandings of disability. It's late for that. So I'm still shocked that I have students who come to my class and say, yes, because we are taught that in speech pathology or social work or psychology that we have to address, or special education, that we have to address disabled people... No, it's late for that. So, I think that meeting each other at the middle, it seems to me that disabled people have always had to meet others where they are. There's nobody meeting us where we are. So let's meet in the middle and have a conversation about what we want for ourselves because if it is about us because there's a lot of talk about helping, which is problematic in itself, because it's not about solidarity, it's not about liberation.
Dr. Sara Acevedo:
It's about helping, and helping is problematic because it is not a matter of equity. It's not a matter of working together to solve a problem, and it is not the problem of disabilities, actually, the problem of inaccesibility and the problem of oppression. Until then we will not have any kind of equal footing. Until we do not become partners in the struggle, as opposed to the ones who are helped, then there will be no solution with which we are happy. No, there will not be. So what I want to leave parents and educators with is please learn from us. There's a wealth of information and materials out there. Learn from us. And learning from us entails understanding disability as legitimate, and understanding disability, disabled knowledge production as legitimate. And Angela Davis has said it referring to abolition. If we do not engage with knowledge production with incarcerated people, then there is nothing that we can do to actually solve the problem of mass incarceration and disproportionate incarceration of people, of minoritized identities because that is the knowledge that should be centered
Dr. Sara Acevedo:
if the intention is liberation. If the intention is to help and reproduce power.
Diana Pastora Carson:
Who's in charge, right? Who's in charge?
Dr. Sara Acevedo:
Yeah. If that's the intention, but it's guised under the idea of poor people, we wanna help them, then that's a different story. But if the idea really is to find justice and liberation, then that's what needs to happen. Disabled knowledge and disabled leadership and disabled epistemologies, ways of knowing, need to be at a center. So that's what I want to leave educators with. The materials are there. Disability Studies is a really vast rich discipline. And for parents, there's so much materials offered by disabled activists. So many blogs, so many podcasts, just like this one, so many other podcasts, just a wealth to engage with.
Diana Pastora Carson:
Sara, I wanna respect your time.
Dr. Sara Acevedo:
Yes. I just got excited.
Diana Pastora Carson:
I know, I do wanna ask you one more question, but I can only do it with your permission.
Dr. Sara Acevedo:
Yes, yes, please go ahead.
Diana Pastora Carson:
Just a follow up. Okay. So Sara, I can hear people's thinking right now.
Dr. Sara Acevedo:
Mm-hmm, .
Diana Pastora Carson:
You know, I'm a special education teacher, I have five students on the autism spectrum in my classroom. None of whom can speak
Dr. Sara Acevedo:
Uhhuh
Diana Pastora Carson:
with words, you know, language. How does this apply to my students? You know, I just wanna make sure that people can contextualize everything you say, you know, as a past special education teacher, as a general education teacher whose focus is on inclusion, and who's an advocate and activist for my brother who is autistic and who gives me consent, who has communicated with me and who I always make clear that we work together.
Dr. Sara Acevedo:
Yeah.
Diana Pastora Carson:
But there was a long time in his life where he did not have a voice.
Dr. Sara Acevedo:
Yeah.
Diana Pastora Carson:
And so people were helping him or in their minds, they were helping him. And I so want my listeners to understand that even in the context of a special ed classroom or in the context of a disempowered student, what have you not provided access to, to have language and choice, and self-determination be a reality in their lives?
Dr. Sara Acevedo:
Mm-hmm
Diana Pastora Carson:
And I just kind of took over, but I wanna hear what you have to say about that.
Dr. Sara Acevedo:
So what I have to say about that is I will decenter myself because I am not a non-speaking autistic, so I have no right to speak for non-speaking autistic. However, there are non-speaking autistics, several of them who are activists and who are very active in using their way of conveying about what it means to be a non-speaking autistic in an oralist world. What it means to be disempowered because the world that we currently live in only values oralism, because there is a conflation between non-speaking or minimally-speaking and non-thinking or non-present or non, right?
Diana Pastora Carson:
Yeah. And non-human.
Dr. Sara Acevedo:
And non-human or subhuman. So I encourage people to engage with that work because that work is so valuable. You have Adam Wolfond, who's a poet working close in tied collaboration with his mom Estee Klar, and they produce amazing artistic work.
Diana Pastora Carson:
Yes.
Dr. Sara Acevedo:
You have, DJ STAs who does excellent work. The co-director of a film called DJ. You have Emma Zurcher-Long, who has also a film. There's a lot of work by non-speaking autistics, and it's just so important to engage with people who represent a specific constituency. So I am not, I have tons of privilege because I'm a speaking autistic. I can speak to experiences of someone who was diagnosed late in life, who flew under the radar and who didn't get access to many things that I really could have benefited from, but also, I was not subjected to abusive treatments. If I would've been diagnosed in the eighties, I surely would've. So, you know, I can speak only to my lived experience. So to special educators who are working with non-speaking or minimally-speaking autistics, going to the source. For everybody just going to the source is what I can say, because we're there.
Diana Pastora Carson:
Yeah. Presume that competence, presume competence and provide access.
Dr. Sara Acevedo:
Presume competence always because people say, you know, well, this is a child and they don't have agency or consent, they're not at a consenting age. Well, an autistic adult is gonna know more than a non-autistic adult about your child. So seek an autistic adult because we exist, right? We do grow up. Not all autistic people are children, right? Which is the stereotype it's like, we disappear into the ether and for every other disability it's the same thing. So, this is what I have to say about that, that the sources are other disabled people.
Diana Pastora Carson:
Thank you so much. Sara, we appreciate your perfectionism, your thoroughness, and your elaborate way of sharing what's real in the world and your advocacy and your activism. And thank you so much for taking time to share with us. We really appreciate you. I appreciate you.
Dr. Sara Acevedo:
Thank you for having me. Thank you. Thank you so much. I also am a very abstract person. I thrive in theoretical stuff. I'm really not great at everyday life. So I do have my, you know, focus and interest is really on that kind of heavy theoretical stuff. So if I said words that were a little bit too intense, I can certainly provide a little more definition for them in writing, if you need them.
Diana Pastora Carson:
I'll be looking up several of your words. I love it. Hey where can people find you if they do want to find your work?
Dr. Sara Acevedo:
It's kinda spread out. If you Google my name and last name plus disability, or plus autism, or plus neurodiversity, there are several podcasts out there and some blogs and some articles and some stuff, and they can also email me, and I can give you that email to put it out with the episode.
Diana Pastora Carson:
I can put it in the show notes.
Dr. Sara Acevedo:
Great.
Diana Pastora Carson:
Okay. Thank you again, Sara thank, thank you so much.
Dr. Sara Acevedo:
Thank you for having me.
Diana Pastora Carson:
Take care. Thank you.
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.
