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:
I am so thrilled and honored to have Jonathan Mooney here today. I've followed Jonathan Mooney for many years. I've read his books and I've seen him speak on numerous occasions. And each time I've left humbled and so much more reflective as an educator, sibling advocate, and as a parent. Jonathan Mooney is the author of The Short Bus: A Journey Beyond Normal; Normal Sucks: How to Live, Learn, and Thrive Outside the Lines; and co-author of Learning Outside the Lines. Jonathan, welcome to the show and thank you so much for being here.
Jonathan Mooney:
Oh, it's really it's really an honor to be a part of this. And I'm inspired by your work and your commitment to inclusion and honored to be a small part of that work today.
Diana Pastora Carson:
Thank you. All right, so can you just begin by giving us a more thorough introduction? Some of our listeners may not have heard of your incredible work, your amazing words, and your journey. So could you share a little bit about your journey and what you do in the world?
Jonathan Mooney:
Look, I've spent my entire professional life coming up on 22 years now, as an advocate for folks with atypical brains and bodies. That work has taken many expressions. It's manifested itself in writing trying to help folks think differently about folks who live and learn differently. It's manifested itself in action developing organizations and initiatives that seek to improve the social conditions of inclusion on the ground in real people's lives. And then it's taken the expression of advocacy, of speaking out about institutionalized ableism and challenging systems to think differently, and more importantly, act differently towards folks with differences. All of that work all of those expressions, comes from my own experience of exclusion because of my atypical brain.
Jonathan Mooney:
You know, I was the kid that couldn't sit still. I was the kid that grew up chilling out with the janitor in the hallway. I didn't learn to read until I was 12. I grew up with a continuum of diagnoses ADHD, dyslexia, and others. And generally I got the message that my differences were deficiencies. And it took me and others who supported me a lot of hard work to extricate myself from that ableist message. And I dedicated myself, once I came out on the other end, proud of being somebody with a disability, I dedicated my life to trying to throw a ladder down, you know, to try to help others who get that message that their differences are deficiencies inside of themselves, and try to do my part to build a more inclusive, equitable world.
Diana Pastora Carson:
Wonderful. Thank you. So you mentioned that, you know, the labels are perceived as deficiencies. Many of us are familiar with the Diagnostic and Statistical Manual definitions of learning disabilities and ADHD and ADD. I'd like for you to share a little bit about your take on what it means to experience these learning differences known as learning disabilities or ADD or ADHD.
Jonathan Mooney:
Well, first I think we have to name the collective work that we in the inclusion equity, and disability empowerment work are trying to do. At the highest level for most of human history atypical brains and bodies have been conceptualized through a deficit pathology lens. You know, normal, and I mean that in the most clinical sense, the middle of the distribution bell curve, was good and right. And if you deviated from the middle of that statistical fiction you were deficient and wrong. And that sort of broad paradigm of different as deficient obviously has been applied to whole swaths of human beings who differed from the center of the bell curve: LGBTAI+ folks, black and brown folks economically marginalized folks, and of course, folks with disabilities.
Jonathan Mooney:
And that pathologizing of difference is deeply ingrained in language it's deeply ingrained in systems it's deeply ingrained in knowledge. The Diagnostic and Statistical Manual is probably one of the best examples of a document that feeds a professional discourse that sees different as deficient and subsequently the result of that different as deficient is a set of actions that are about trying to fix folks with differences that leads us down a path of trying to make the square or peg fit the round hole. So my entire orientation, and it took a minute to get to this place, be clear about that, cuz I think we internalize that different as deficient message, and it took me a while to extricate myself from that. But my entire orientation is a diversity orientation that challenges, the idea that the middle of the bell curve is good and right, and looks to celebrate the folks who deviate from that middle of the bell curve.
Jonathan Mooney:
And that requires us to think of things historically as disabilities inside of people, to think of them as differences that become disabled by the way society constructs schools, work, community. It puts the problem, not in the person, but in the environment around the person. And that's how I conceptualize the specific labels that were applied to me, dyslexia, ADHD depression. I see those as a part of the continuum of human difference. You know, the notion of a normal learner, the only normal learner is a learner you don't know very well, right? We were all on a continuum of learning diversity. The notion of a sort of normal attention span. How do we call one attention span the good one and the other one, the wrong one? Those are all social constructs. And so the way I conceptualize it is, my brain differs from the middle of the bell curve. There are challenges associated with that: limitations, weaknesses, disabilities. Of course, I struggle with reading. I struggle with sitting still. Those are neurobiologically based. But the problem isn't in me. The problem is in the way that we conceptualize learning. The problem is the way we conceptualize sitting still as being the good human. The problem is ultimately in the systems that enforce normalcy. And that shift leads us to not just thinking differently, but ultimately hopefully, acting differently, not trying to fix people, but trying to fix the environments around them.
Diana Pastora Carson:
I've heard you say in the past, you know, that we have these labels that are disorders, impairments and defects. And one could say that a child with a learning difference or a learning disability that they "suffer" from them. Like you said that there are difficulties associated with it, but you had also said in the past, I've heard you say that you suffered from "dysteachia." Yeah. If I'm saying that correctly, you coined that phrase. And I want us to dive into that a little bit. You know, this is a podcast that is here to support educators and families. So we want to look at very specific situations that have happened not only in your life, but in other students lives and how the education system, that institutional ableism, has impacted the lives of students, and how teachers, educators, administrators need to be aware of the effects of what we do in our classrooms and in our schools.
Jonathan Mooney:
Look, you know, when I first got my start almost 22 years ago when I was an undergraduate in college, people would come to my story. You know, I didn't learn to read until I was 12. I graduated from an Ivy League university, Brown University, with an honors degree in English Literature. And people would come to me and say, well, hey, you overcame your dyslexia. And that phrasing pretty clearly implies that dyslexia is A) a bad thing, right? That one needs to overcome. And B) that it's a limitation inside of me. And by default, all who are diagnosed with neurodiversities, that needs to be overcome by the individual. And I really took issue with that because it wasn't true in my own journey, and I don't think it's true for others. What I overcame and I said it in a flippant way, was dysteachia.
Jonathan Mooney:
But what I meant by that in a broader, more serious way, was overcoming the structural barriers that privilege some brains and bodies over other brains and bodies. And I think that is the shift. We're gonna really move beyond just talking about inclusion to actually including folks. That's the paradigm shift that has to happen. Educators, parents, policy makers have to ask themselves what are the barriers in the environment that are privileging certain people over others, and are excluding folks who don't make that definition? You know, I know that's a kind of a macro level thing to say, so let me just make it very clear in my life. Look ADD: difference. My problem was the school desk, right? because in our schools we have passive learning environments where on average kids spend about 85% of the day sitting still. We confuse being able to sit still and raise one's hand and keep their mouth shut as being good.
Jonathan Mooney:
Right? And if you can't do that, you get the message that you are bad. The problem isn't ADD. It's that structural embedding of good equals compliant. Same is true with dyslexia. You know, I'm not naive about or in denial about the very real limitations that come with dyslexia. I struggle with reading. I struggle with writing. I spell at a third grade level to this day. My problem, however, wasn't the challenge with spelling. It wasn't the challenge with reading. It was being made to feel stupid because I didn't have the so-called normal brain. And there's all sorts of structural ways that we privilege one brain over the other. You know, the smart kid is the kid that reads fast and reads early. And if you ain't that kid, you find yourself in the stupid reading group. And then obviously, that sort of privileging and subsequent segregation takes its highest manifestation in the form of the resource room and the pullout special education rooms. So our orientation has to be not what's wrong with the person, not how do we diagnose and fix the deficiencies inside of people, but how do we look at the environment and the practices, policies and behaviors that are privileging certain humans over other humans. And then how do we not just map those policies, practices, and behaviors, but then how do we start to change those to not fix the person, but the learning environment or working environment or community environment around the person.
Diana Pastora Carson:
Excellent. So that leads me to your idea that we are, our system is, fanatically obsessed with that there is one way to learn or that there is one way to be normal and that that leads, or that led you to go home and tell your mom or ask your mom, why am I stupid? Why am I crazy? Why am I lazy? And then there's all these other adjectives that we could add to that, that we know that students are asking themselves and their families, you know, why am I broken? Why am I wrong? Why am I defective? Why am I bad? Why am I a freak? And you can go on and on and on. Can you talk a little bit about what being part of a broken system does to a student internally and what that leads to, what the statistics are for students when we do not address the inequities present in our school systems.
Jonathan Mooney:
You know, look I, 22 years, you know, spoken in all 50 states, multiple times in almost all 50 states, eight countries at this point, thousands, thousands, and thousands of emails sent to me from folks who lived the experience of being told they're not normal and the consequences are clear. They feel deficient and less than as human beings, there is a deep dehumanization of folks with atypical brains and bodies that predates our pathology model. You know, if you look at biblical framing of physical difference in most faith traditions, not just the sort of Judeo Christian tradition. The person with a different body is immoral, evil, et cetera. So that is just such a deeply ingrained part of our culture, conscious and subconscious. And so what are the results of that? Well, the results of that are folks who deviate from the middle of the bell curve
Jonathan Mooney:
Think they're stupid, crazy, lazy, broken, freaks, less than as human beings. And that persistent dehumanization is directly linked to the life outcome data that is so troubling. You know, young folks with atypical brains and bodies have the lowest graduation rates from school. They have the lowest employment rates. They have the highest incarceration rates out of any minority group in the country because when you get the message that you're deficient as a human being, well, you give up hope. And then subsequently, when you are immersed in a system that is all about trying to make the square peg fit the round hole, right? Like when we remediate difference, we, in some ways try to eliminate difference and our educational paradigm, not everybody, but the fundamental systemic structure of special education, is a remediation model. And there's a long history of policies and practices to remediate or eliminate atypical brains and bodies.
Jonathan Mooney:
And the highest expression of that elimination agenda was the global eugenics movement that sought to rid the world, not my word, their word, of "defectives." And so we forget sometimes intentionally how deeply ingrained our antagonism is to different brains and bodies. And we confuse helping with remediation, you know, oh well, we're doing the right thing. And I'm not saying that any teacher is intentionally not doing the right thing. I'm saying that we're all swimming in this pool of different as deficient. And we have to extricate ourselves from that if we have any hope of changing those macro-level statistics. What leads to folks struggling in life is not their bodily failures, not the problem inside of their minds or their bodies. It's the way that they have been treated and excluded in many of our systems.
Diana Pastora Carson:
Beautiful. So if I'm a teacher going to work every day whether in a pandemic or not, and I have some students who within the system of what's expected of students so that we can teach the curriculum, and dot our i's and cross our t's, and survive the day with 25, 30 students in our classrooms. Give us some pointers from your perspective, your lived experience, and the experience of thousands of others who you have encountered, what are some things that we should not be doing or saying in our classrooms to students?
Jonathan Mooney:
Well, look, first of all, educators are stuck in a flawed system that they didn't design, right. It ain't on them.
Diana Pastora Carson:
Thank you for saying that. Yes.
Jonathan Mooney:
And they've been you know, acculturated in their education and their textbooks, and then by the expectations of the systems leaders. You know, the number of times I talk to, you know, teachers who say, look, you know, the principal walks down, pre-pre pandemic time, and looks into the classroom, and the classroom where the kids are sitting still, and everyone's quiet, is the good teacher. The classroom where, you know, the kids are engaged and talking, and maybe showing natural human energy, is the bad classroom. And what am I supposed to do? Well, you're right about that. So, first and foremost, we all gotta understand that we're on the same team here, and we all want to, and have a vested interest in evolving our approach to learning grounded in principles of equity and inclusion.
Jonathan Mooney:
And, you know, that requires us to advocate for policy and systems change. You know, I started speaking in 2000, you know, and speaking, don't get, don't get the idea that it was glamorous. , I was sleeping on people's couches, and going anywhere on a Greyhound bus where somebody would get together, you know, five chairs in a cafeteria, you know. And that was coinciding with the implementation of No Child Left Behind. And I think we don't have a proper cognizant understanding of how detrimental that piece of federal legislation was to learning diversity, because at that point, the terms of the game became standardized testing and standardized teaching. And I would visit schools in which, you know, teachers would say, I'm handed a script. You know, literally, here's the script you're supposed to read.
Jonathan Mooney:
And we disempowered teachers and empowered tests and the testing companies, and we are still trying to extricate ourselves from the damage of that piece of federal policy. And let's make no mistake about it. That was a bipartisan piece of federal policy that was George W. Bush, and it was sponsored in the Senate by the late Senator Edward Kennedy. And let's make no mistake about it. Obama with Vice President Joe Biden, doubled down on the core tenets of No Child Left Behind. They just renamed it. And current President Biden has not articulated any aspirational vision for changing the structural terms of what we think of as the purpose of education. So we gotta work on that together. You know, we have to advocate on that together, and politics matters, and who we vote for matters, and the stance of the unions matter.
Jonathan Mooney:
So let's all contribute to the systems transformation of that. Now I know that that is a big thing. So let me just talk about some day to day things. Look it's, you know moving to active learning environments where kids don't spend you know, 85% of the day sitting still, low hanging fruit. It benefits the kids with ADD, it benefits the whole continuum of young folks Providing speech to text and text to speech technology, which used to be a big old thing because it was expensive and hard to get. Now, kids got that on their pockets and their phones, right? Those are accommodations that can be made even within a fallible, flawed system in the day to day, by teachers on the front lines. And what those represent, and I think this is the path forward in the flawed system that educators find themselves in, what it represents is a shift of thinking opposed to how do we remediate that problem in the kid?
Jonathan Mooney:
The new question should be how do we accommodate that difference within the kid? And when we start to ask ourselves that, well, the two accommodations, I just articulated: active learning, accessible expression and information access through technology. That's just the beginning. So it all starts from that shift of paradigm; not what's wrong with the kid, what's wrong with the environment; not how can I fix the kid, but how can I accommodate their difference? That's the path forward for a teacher doing a hard job, but doing the most important job, always been important, but let me tell you, more important than ever, the work that educators are doing. Now, we have to walk and chew gum. We gotta be able to accommodate in the day to day, but then at the same time advocate together collectively for real systems transformation.
Diana Pastora Carson:
Sometimes, sometimes there are days when teachers say things that impact a student's mental health and wellbeing. And I'd like for you to share some of the phrases that, and I know that you honor educators, I know that. And at the same time, I'd like for educators to have a very concrete example of what it is that we sometimes say that can have a negative consequence, not only in the moment and in the day in the school year, but forever for those students, just so that people are aware. And then I'd like to shift that. I'd like to see what, you've already talked, talked about, alternative ways of thinking. I'd like to also talk about some of the ways, I know you talked about Mr. Rosenbaum when you were, I think in third grade and what he said to you that shifted your whole entire view of learning and gave you perfect attendance in school for once when you had been absent the year before the years before from school. And that gave you some hope and some enthusiasm for learning. So first, what are some things that we don't wanna say, that we need to reflect on how that comes across to students? And then what can we say instead that has positive effects on student learning and wellbeing.
Jonathan Mooney:
Look, words matter words. Words shape how we think and shape how we act, and they shape how other folks think about themselves. And the good news about that is it doesn't cost a dollar to change the way that we speak to other human beings. You know, that's within our control on the day to day. And so I think you're right to name, you know, what are the linguistic expressions that sometimes we use unconsciously, because they're a part of that long cultural history of different as deficient. You know, and we've all inherited that language. And how can we raise awareness about that so we can speak differently, and subsequently think differently and act differently towards folks with differences. And so, you know, in my life, a few of those, you know, "what's your problem?"
Jonathan Mooney:
You know, like how often is that said, you know? Like it was said to me when, you know, I couldn't sit still in school and my foot would be bouncing, I'd be rocking the drums, and the teacher would stop the class and say, you know, "Jonathan, what's your problem." hat's wrong with you?" You know, that had been said on so many occasions to me outside of the classroom, by my father pretty persistently in my life. The naming of certain behaviors as smart or manifestations of intelligence and others as not as important, that happens all the time. You know, who's the smart kid in class? It ain't the the builder. It ain't the drawer. It's not talker. It's often the reader and the memorizer, right? Those are the groups of students that we attach the label intelligence to, and we don't extend or broaden that label of intelligence to tactile kinesthetic intelligence, social emotional intelligence, creative intelligence, entrepreneurial intelligence. We all know what gets you in the smart group.
Jonathan Mooney:
And it ain't those things. It's a narrow band of academic skills. So broadening our circle of traits, human traits that we call manifestations of intelligence really matters. And then the way that we talk to young folks about their atypical brain or body really matters, you know. I remember when I was called into the school psychologist's office to get the test results back. And you know, it was like a funeral, you know, like the lights were all low, there was soft jazz music playing in the background, you know. There was literally like a box of tissues on the table, you know, because everybody thought we were there to get the worst news in the world. And then they subsequently read from parts of the diagnosis, the test, and it was all deficit this, disorder that, executive functioning this, you know. We gotta elevate our language around that.
Jonathan Mooney:
We have to talk about differences with challenges and good things, right. We don't have to deny the challenges that come with many expressions of disability, but we also have to elevate out of that deficit model. And that is ultimately what I think the most impactful educators in my life did. They elevated out of a deficit orientation that had seeped into their language at no fault of their own. And they replaced it with disability as diversity, and by naming the good things that go hand in hand with the very real challenges.
Diana Pastora Carson:
So then what are some concrete things that you can say to a child in your classroom? Who, what did, well, what did, let's start with Mr. Rosenbaum. What did he say to you that was so transformational for you?
Jonathan Mooney:
Look, I met this teacher kind of at a super-low point, kind of post that funeral for the death of my normality in the school shrink's office. You know, he was a teacher that focused on what was right with every student and not just me. And he would ask young people all the time, hey, what are you, you know, what are you good at? Like, what do you really care about? What are you good at? And he tried to shift that, that deficit conversation, which frankly, subsumes not just young folks with atypical brains and bodies, but it subsumes all young people. It's deeply ingrained in our approach to education writ large transcending ability status. And so he was constantly like, hey, what are you good at? And, you know, I had no answer to that.
Jonathan Mooney:
It would be, oh, I'm not good at anything. You know, like I suck at spelling, you know, I suck at reading, all that kind of stuff. And he refused that answer. He never gave up and he constantly kept pushing on the idea that I had something right with me. And one day he came to me and he said, well, you know, Jonathan I've been watching you. And you're really, really, really good at telling stories. Now they're inappropriate stories you tell, often , but he didn't care, you know. He was like, look, I don't care. You're really good at telling stories. And I think you could be a writer. And I was like 9 or something, and I looked at him. I said, "Mr. R., a writer really? Are you out of your mind?"
Jonathan Mooney:
You know, , I can't spell. And the guy looked at me and he said, "You know, Jonathan, in my class, screw spelling." Screw spelling? Yeah! You know, right on! Like for the first time in my life, somebody said, you know, forget what you can't do and focus on what you can do. And that didn't cost any money, you know. Now the hard work was making time in my day to really honor that rhetoric, you know, like that's the hard part in this, you know. But I don't wanna discount the fundamental revelation in my own sense of self and revolution it became in my education to challenge that deficit model with our words, you know, with our language. And then ultimately, not just with our language, but with our actions.
Diana Pastora Carson:
Yes. Yeah. That's such a powerful story, Jonathan. What he did was he gave you a way, he validated you, you are valid as you are, screw spelling. And you've shared that later on in that year, you actually were working on spelling, you know, but at that time he honored where you were, and didn't make spelling the equivalent of you being valuable and intelligent. And I just, I just love that. And I think that good teachers change lives and we all wanna be that hero. We wanna be that good teacher. And sometimes we get lost in the system that you spoke about so eloquently and in administrative expectations and in our previous, you know, teacher training. And so I think it, it's such a valuable story for teachers to hear, for administrators to hear that we need to meet students where they are and to validate them where they are. And like you said, to be open to accommodating, and even before that, just having a different mindset, that disability is part, it's a valuable part of diversity. And so we just need to create environments that are accessible and inclusive for all students from the get go.
Jonathan Mooney:
And that really raises the macro question of what should be the evolution of our systemic approach to disability and inclusion in school, but ultimately beyond. And, you know, if you look at the history, the Individuals with Disabilities Education Act of 1974/75 was a monumental piece of civil rights legislation. You know, before that act, millions of children young people around the country were excluded from education based on disability status. And this was a federal mandate that could no longer happen. Unfortunately, it was inclusion through segregation, right? Like it was inclusion through segregated, special education programs. And that's not to say those programs weren't a step forward but they weren't the final step on a journey of empowerment and inclusion. And the IDEA was followed by the ADA, The Americans with Disabilities Act, which was a true piece of civil rights legislation.
Jonathan Mooney:
It mandated that all environments: work, school, community, had to be accessible for the 25% or more of human beings with atypical brains and bodies. And that brought in this notion of not remediating, but accommodating, right? You accommodate by building ramps, literal ramps, you know, but metaphoric ramps. And the thing that I think we all know about those ramps, literal or metaphoric, is they don't just benefit people with disabilities. You know, I'll tell you, I've used the ADA mandated ramps in businesses to push my children's stroller, to accommodate for a knee injury after too much sports, et cetera, et cetera, et cetera. So we're really what we're talking about is universal design of environments. We're talking about reimagining how we organize work, learning and life, not through the design principle of normality, you know, the myth of the normal human, but through the design principle of the reality of human embodiment. You know, there's a saying in the disability rights movement that I like to amend a little bit, which is we are all temporarily abled bodies,
Jonathan Mooney:
And I like to say minds. We will all experience disability at some point in our journey, whether that be through the natural maturation process of human beings around physical disability; the decline in mental capacity in a traditional sense; or whether that be being disabled momentarily by environments that are not aligned with our particular needs. And so if we can recognize that, you know, that disability is the majority minority, This whole notion that this is something for those people is wrong. It's not for those people, it's for all people. And we can start to design our systems, environments, not around the reality, the myth of human sameness, but the reality of human difference. And that can start, obviously that's a policy and a systems agenda, but that can start in your classroom. You know, it can start with the words that you use to articulate to others that different isn't deficient. It can start with the accommodations that often don't cost a dime in the classroom. But it can ultimately go beyond starting, and it can continue with our advocacy together, collectively advocating for every single human being's, right to be different.
Diana Pastora Carson:
What a perfect way to end this, Jonathan. Thank you so much for enlightening us and empowering us with your knowledge and your passionate advocacy for all students and all people.
Jonathan Mooney:
Oh, hey, it's really, really my pleasure to be a small part of your important work, but a even smaller part of our collective important work together. And I was honored to be on your program 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.
