Join us for a conversation with DJ Savarese related to Presumed Competence. As one of only two AAC-using autistics to be fully included from kindergarten through college graduation and beyond, DJ will share with us his journey, and how he has been successfully designing and facilitating disability and social justice projects for over a decade.
DJ has also shared visuals that go along with the content he discusses. To access the visuals click here to go to the youtube version of this podcast.
Unknown Speaker 0:05
Welcome to collab cast.
Ruchika 0:25
Music, Hello. I'm richika Chopra, host of collab. Cast our collab cast conversations are a resource from the urban collaborative supporting over 100 districts in 29 states across the country to build equitable and inclusive practices. We are here to listen to stories and personal experiences of people in our community, their successes, how they got there, and advice they might share with others who are facing some of the same challenges and opportunities they may have had. Each of our collab cast speakers connects us to the theme of the month that we are looking to explore with you all our urban collaborative members. These themes concern issues that you have told us you are grappling with and want to learn more about this collab cast theme is presumed competence. Today, we are thrilled to have David James Deej savares Join us. Deej is a multi genre writer, artful activist, public scholar and teacher. He authored swoon in 2022 containing two poems that were nominated for Pushcart Prizes, a doorknob for the i in 2017 and co authored studies in brotherly love in 2021 a three time Pushcart Prize nominee. He has published poetry, creative nonfiction and scholarly essays in a range of literary journals and anthologies, co producer, narrative commentator and subject of the Peabody, award winning documentary deed inclusion shouldn't be a lottery. Which was released in 2017 he was 2022 23 Iowa Arts fellow and zoo glossier fellow with 2017, to 19 Open Society Foundations, human rights community youth fellow. He co teaches inclusive, multi generational, global poetry writing classes and directs the lives in progress collective for the Alliance for citizen directed supports one of only two AAC using American Autistics to be fully included from kindergarten through college. He has been actively disrupting the status quo since he was five years old before moving to Iowa City. DH, graduated fi, built a Beta Kappa with a double major in anthropology and creative writing from Oberlin College in 2017 Hi, Deej, thank you so much for being with us. In my introduction, I shared some of your work and what you have been involved in over the years. Can we stop this conversation by asking you to share some more details about your life's journey until now and how some of what you have been involved in has helped you to share your perspectives and beliefs. Sure.
Speaker 1 3:27
Sure. Hi, my name is DJ Savarese. I use he, him, his. I’m a young, white male, with wavy, reddish brown hair, dark glasses, and a goatee. I’m wearing a black collared shirt, sitting in front of concrete steps that rise in the background. Thank you for your introduction. As you mentioned, I self-identify as an artful activist, multi-genre writer, thought leader, presenter, and teacher. I believe we all have the capacity to make the world a better place. We all yearn to be an essential part of something bigger than ourselves. What does it mean to live our lives and lead from this perspective? As one of only two AAC-using autistics to be fully included from kindergarten through college graduation and beyond, I’ve been successfully designing and facilitating disability and social justice projects for over a decade. I currently serve as the founder and director of the Lives-in-Progress Collective at The Alliance for Citizen-Directed Supports. I also co-produced, and narrated the documentary, Deej: Inclusion Shouldn’t Be a Lottery, a Peabody Award winner for “unprecedented inclusive filmmaking.” The film follows me through high school and into college at Oberlin. And as a graduate of the Leadership, Organizing, and Action course at The Kennedy School at Harvard, I am well-versed in community building focused on empowering others to realize their shared outcomes in the face of uncertainty.
In the 18 ½ years I was fully included from kindergarten through college graduation, I worked with 52 teachers, 22 professors, 18 school support assistants, 15 after school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. And I learned alongside at least 1,350 different students. That’s a total of approximately 1,500 people with whom I spent at least 4 months and, often times, 1 or more years. Those people are a part of my life, and I am a part of theirs. Those exchanges change the world we all live in, not just mine.
As part of my Open Society Human Rights Fellow, I got to study Leadership, Organizing and Action at the Kennedy School at Harvard. I learned there that “leaders aren’t famous celebrities; they’re massively hopeful and resilient people who support others in their shared goals in the face of uncertainty.”
I see from my lived experience as a fully included person with a disability that we are all interdependent, not independent; that we yearn for self-efficacy, not self-reliance.That means we both give and receive help and support. And that we yearn to be essential participants in our communities; not isolated individuals pretending to only need ourselves. It also means we need to pay attention to the how of what we do. It’s not enough to simply climb up society’s current power structure to be included. As a poet and changemaker, I often rely on metaphors and seek out role models from the natural world. This has led me to see or think of ableism as the cultivated garden of a speech-based society. If I adopt that model as a given, as the only way of being, then my only hope to avoid being weeded out, is to become an exception to the rule. But if, instead, I see life as a field of diverse and interconnected rhizomes—what some might call weeds—then I begin to undermine what keeps us all dutifully stuck in an inclusion/exclusion world, in which some beings are seen as disposable and others not. Let me explain. Rhizomes survive and thrive by creating an big network of multiple root bulbs full of nutrients and resources. If cut down, they grow back. Faced with difficult conditions, they can lie underground for up to a year, resting and restoring themselves before blossoming again. In this sense, weeding them out is far more difficult, if not impossible. And like us, Rhizomes are diverse. Bamboo, turmeric, and iris are all rhizomes.Using this metaphor to guide my thinking, I see that we can’t change who we are, but we can change the hopeful ways we relate to each other. Law, policy and many assistive technologies assume the disabled are outsiders, striving to inhabit that cultivated, speech-based garden; so they seek to offer us passage across the divide by dismantling the physical barriers and by helping us pass or pose as independent, able-bodied, speakers. But once there, we are seen as exceptional and accepting of the way things are. But, what if, like rhizomes, we see ourselves as one of many lives in progress and seek to identify and disrupt the attitudes and assumptions that keep members of the dominant culture stuck inside that garden? What if instead of trying to make our ways in to the garden, we invite everyone out into the field? What might that look like? With this metaphor in mind, I strive to dismantle the garden wall of inclusion and exclusion both from inside and outside the garden: by engaging in multiple ways with multiple communities simultaneously through writing and films addressing different audiences; by centralizing resources while honoring diversity and individual paths forward at the Lives-in-Progress Collective; and by connecting people who might otherwise never meet and allowing them to co-create community during my classes and presentations.
Ruchika 10:02
Thanks, Steve, it's amazing because just in this little time that you shared your response, there is so much that you said and so much that you have already done, to be able to share your perspectives, to be able to share your journey, to be able to share what works and has worked for you, the people you've interacted with. You talked about, through poetry, video, through your teaching in classes, that you've been able to do all those things, some quotes that you just said that really wanted to it stood out for me. You said something about many lives in progress. We are all many lives in progress Disrupt. You use that word a few different times, invite into the field. You also talked about so many people that you've interacted with during schooling years, right? 1500 Wow. That is so amazing that you actually put a number to people that I'm sure we all interact with during our schooling, but to actually see a number connected with that that's amazing. I'm sure brings broad with it so many different learning experiences that were both positive and some not so much. Can you share some barriers and successes that you've had in your journey in school when you were younger. Can you share some more specific barriers you have faced in your schooling, and then talk about which solutions, including specifically people that helped make schooling successful for you in that 1500 people that you interact with, which were the people that really, really helped you to be able to become successful in your learning and in school.
Speaker 1 11:48
I didn't face very many barriers. Actually. What I needed were communication supports and visual accommodations for academics until I could catch up with and surpass my classmates in the fourth through sixth grade. What I did use were a bunch of different forms of communication, which I discuss in an article I wrote for logic magazines, which I talk about in a recent presentation I gave for the King County Library System. What I can say is that when I moved in with my adoptive family, we began learning and using every form of communication we could find. Cameras became our main translators. My parents took pictures of everything, activities, places, people, foods. They used the photos to make sure I understood them and to teach me how to make choices. By picking photos of what I wanted, I could escape a plate of cauliflower by bringing them a logo for KFC, each photograph was labeled with the printed word so I could learn sight words and begin to understand what they were saying, still not everything could be captured in a photo. I needed other means of communication to say, stop when my dad tickled me and I needed to catch my breath and away, to say, bathroom when I needed to pee now. And so we developed a basic manual sign language to convey essential messages. What's crucial is that, instead of insisting, I joined their speaking world, my parents learned these new languages with me. When it was time to start regular kindergarten at my neighborhood school, I brought my languages with me. Before long, my classmates and I were all using photos and learning to spell with our fingers, but participating in school also required new technologies. I started using a simple voice output device like the single switch Big Mac and cheap cocky that allowed me to play pre recorded messages in either my mom's or dad's voice to answer questions during class, because I had learned to communicate in these ways. I was taught to read and write, first with laminated sight words and later with a $17 label maker from Staples. By the time I entered Middle School in 2003 written English had become my dominant mode of communication, and I began to develop a public voice. As my language got more sophisticated, so did my devices. The Gemini, the large laptop, device with a touchscreen that was a quarter of my weight allowed me to create a countless number of expressions with any degree of sophistication. In ninth grade, I got the Dynavox, a smaller but similarly heavy equivalent to the Gemini, with a clear, mechanical voice. It had a hard drive prepopular. It with 1000s of phrases, but they didn't sound like me with one finger, I laboriously programmed in as many of my own phrases as I could for more private conversations, I far preferred the silence of written words. I brought my labeler with me everywhere, using it to converse with friends and process trauma with my therapist. It wasn't until the 10th grade, when I got my first laptop with text to speech software that I had one lightweight device that allowed me to communicate silently or speak with a digital or recorded voice. For me, inclusion means having a voice in one's life, not speaking people rarely, if ever, do, but thankfully, this is starting to change, and I guess I hope for a world in which multimodal communication, including sign language, is part of everyone's literacy based education in kindergarten, my regular education teacher happened to no sign, and they found when she signed more frequently throughout the day, because I was in the class, our classroom had fewer students referred to special education for literacy based skills, despite having The same number of at risk students in our room. In other words, sign language helped hearing students become literate who otherwise might not have been early on I loved and needed to touch the words so my mom made accommodations for every assignment I did at school. I can't explain everything that she did, but what I can say is I used velcroed sight words, answer banks filled in the blanks and concept webs to show what I knew from kindergarten through fourth grade. What I can say is that my classmates and friends never looked at me with condescending eyes. They knew and appreciated me for who I am. Fourth grade was my real blossoming period when everything suddenly clicked and I could decode and write anything I needed to my two teachers that year made me feel like an essential member of their classes, smilingly encouraging me, working directly with me during work periods and celebrating my accomplishments. What I can say too is that when I was in high school, two teachers really offered me ways to amplify my voice further. One was my speech teacher, not my speech therapist, but the public speaking teacher at the school, she never asked that I be excused from any of her required activities, and actually asked me to write and CO direct two readers theaters that received honorable mentions at the state competition. The other teacher was the Advanced High School writing teacher. He became a real friend offering me platforms through which I could share my thoughts about literature and write creatively. Thanks to them, I went to college reassured and well equipped to take on anything asked of me, but I couldn't have managed any of this if it weren't for my kindergarten friends and teacher, Mrs. Johnson, offered me love, security, possibility, respect and high expectations, which in turn led to my classmates offering me love, friendship and companionship,
Ruchika 18:35
importance of thinking about various ways that we communicate and the systems that get created over the years using photos, manual sign, how we all need to learn each other's language and communication systems. The impact of sign on the other kindergarteners in your class is evidence of that. It's amazing some of the many different themes that you talk about right now in in the way and the solutions that you and your family and your teachers created together to be able to have you, like you said about the fourth grade teachers, creating a space that made you think, that made you believe that you were an essential member of the class. But then your high school teachers having the clear expectations and high expectations of you, and, of course, your kindergarten teacher and friends who created the basis of what the rest of your schooling and your learning look like while you were in in school. It's just amazing to hear all of that and the power that communication and communication systems, and the reminder of all of that and the ways that you used it, in different ways, in different times of your life, in different times when you were learning differently, or when you said about in the younger years, when you were using more photos and then the label one, the label communication system that you had created, a simple one, which you continue to use, even. When you went out even later in life, some of the more high tech communication devices, but then just this whole idea that everybody that you were in space with considered your voice and considered what you brought to the table is amazing, and I appreciate and thank you for sharing that one of the successes that you have shared is the work you are doing with self directions. Can you share some more information on the work that you are doing, how you came to be engaged in this work, as well as let our listeners know if they can connect with you, if they're interested in working with you to do some some of this work around with their students in their districts and in their schools,
Speaker 1 20:49
The Lives-in-Progress Collective at the Alliance is a national, diverse, grassroots network and online platform led by and for people with disabilities, collectively working to end segregation and ensure our basic human rights to self-direct our own lives. Led by the Disabled, particularly the multiply marginalized and alternatively communicating, we have established a national collective of leaders with disabilities focused on transforming self-direction and are building a national resource that allows individuals to build self-direction from the ground up. It includes an online national map of diverse, documented paths to meaningful, self-directed lives-in-progress that allows people to search for mentors, resources, and practical ideas by location, keywords, interests, talents, and vocations. It will offer fast, easy access to the various resources, programs, and supports used by others who are self-directing and assist people who want to move out of state for college, employment, or other personal reasons. Seeking to empower, it will pay disabled adults for their expertise and lived experience. It will dismantle common communication, financial, and cultural barriers to access. Its ongoing, vibrant community will be crucial to those beginning to self-direct, but also to the sustainability and expansion of the collective. Let me show you how it works. Let’s imagine you’re an adult of any age who lives in Lewiston Maine, and you want to create a sustainable self-directed life for yourself as an artist. You go to the internet, type in Maine self direction and find this. Nothing more. Now, what if that page has a link to the Lives-in-Progress Collective and one click takes you to this. You type or choose “artist” in the keyword search. Up comes this. There aren’t any mentors in Maine, but you quickly see a diverse selection of 37 artists to choose from nationally. Each profile contains the mentor’s name, pronouns, contact information, self-identifying characteristics, such as ethnicity, job, interest, race, disability, and links to resources and captioned videos available online. Or you want to start a business. You type “entrepreneur” into the keyword search and pick and choose from 30 entrepreneurs across the country. Again, you can see each mentor’s name, pronouns, contact information, self-identifying characteristics, such as ethnicity, profession, race, disability, and links to resources and captioned videos available online. Finally, LIPC will host webinars, spotlights on self-direction, such as this one about staff turnover, which contains practical advice about how to work remotely from home without daytime assistance as someone with a physical disability and how to keep the same support staff for over 25 years. With the Lives-in-Progress Collective, you’re picking and choosing what to prioritize and who or where you can find the help or ideas that feel best for you. Knowing you have a lot of potential advisors to consult with who have real lived experience self-directing, you feel less vulnerable to failure, less isolated, less out there on your own.
Meanwhile the Lives-in-Progress mentoring consultants benefit from camaraderie, added income, and publicity for their own businesses. This kind of diverse, cross-disability leadership is essential to life out in the field where we each find room to breathe and to grow. Please contact me if you’d like to do a focus group with your students. I can be reached at dj.savarese@gmail.com
Ruchika 25:18
thanks, Deej, and we will also be sharing your information as to how they can people can reach out to you in the bio that is shared with this particular podcast. So thank you for sharing that. I just want to say that lives in progress seems to be an organization that many of our district members could use with their schools and students around self direction, but then also the wealth of people that students can connect with around their areas of interest and goals, which may not be like to your point, situated in the district that the student lives in, but with the larger community in the country. So it seems like an extremely valuable resource. And like diet said, people who are listening members feel free to use these information to be able to reach out to him, just let letting you know, because I did that, and he was quick to respond and be able to share with us this information that we're talking about today and share his journey with us today. Wow. Deej, leaving us with this idea of hope and everything that you say is poetry. I know that there was a poem that you wanted to share with us that we actually asked you to share with us. So please go for it and share with our listeners some of your poetry.
Speaker 1 26:39
It's on the Poetry Foundation website, in my chapbook, a doorknob for the eye, in my book, swoon, and on wordgathering.com when I happened upon this drawing by 10 year old David Barth called Vogels, which features hundreds and hundreds of birds all crammed onto the canvas, I knew I had to write about it. Barth, who is autistic, creates a kind of mischievous aviary, a teaming metropolis of wings. The medical profession would call his love of birds a restricted interest and immediately pathologize it. Yet what is perseveration but commitment, devotion elsewhere. I termed this the I and its pew in this poem, I reference Nadia Cole mean, who lost her talent for drawing when she learned to speak. And I asked the reader to say a prayer for David, because, like me, he lives in a world that demands conformity. Will he lose his way of looking? Will he be spare behavior therapy, encouraged to be himself? Finally, I modeled this poem after a poem by Eduardo coral
Speaker 2 27:57
Vogels, drawing by Altus David Barth, age 10, 2008 by DJ savarez, after Eduardo corral. One, who needs water with so many wings. Two, a Dewey Decimal System for feathers. Three, the librarian in the tree says, quiet. Four, I felt an intimacy with birds bordering on frenzy that must accompany my steps through life. John James Audubon, five, bird shit, a Malthusian catastrophe. Six, to go out on a limb. Seven, I would like to be a pelican, I think because penguins are much too theological. Eight, with my eyes, I scooped fish from the air. Nine, must love always be a form of taxidermy. 10, Audubon tied yarned to the legs of the Eastern Phoebe, and thereby discovered that it nested in the same place every year. 11. Ornithologists call this bird banding. 12, I call it autism, or, as the experts like to say dismissively, perseveration. 13, let us persevere with detail. 14, the yellow beak, the red beak, the brown beak, the black beak. 15, with my eyes, I scoop fish from the air.
Speaker 2 29:58
16, the world is. Not a zoo. 17, nor is it an aviary. 18, nor a dictionary. 19, when Na, an autistic savant, learned to speak, she lost her drawing skills. 20, at three, she had rivaled Vermeer. 21 does diversity have a call number 22 the librarian in the tree says quiet. 23 to go out on a limb. 24 no duckling is ever ugly. 25 say a prayer for David. 26 in autism categories, do not wish to rule the world. 27 rather they attend, they procreate. 28 like rabbits.
Ruchika 31:04
You're an amazing poet. We always end with our guests by asking them if they can share one piece of advice that they've always wanted to share with educators. I know that this is something that many of our guests kind of struggle with, but I was wondering if you wanted to take a stab at it,
Speaker 1 31:22
I love his godfont by take not hand. Waking up this morning, I smile. 24 brand new hours are before me. I vow to live fully in each moment and to look at all beings with eyes of compassion. What would it mean to begin each day with this reminder? People often ask why inclusion and self direction are so rarely practiced, and I feel it's all about hope and fear. Rebecca Solnit writes that hope locates itself in the premise that we don't know what will happen, and that in the spaciousness of uncertainty is room to act. Authoring oneself isn't easy, but if I am fluid, dynamic, in flux, then all is open to me. I'm less sure of myself, Yes, but in live uncertainty lies hope and possibility. Associative, expansive, collaborative, collective never set in my mind, always changing my way feels less closed off, more open to connecting. For me, inclusion and self direction are about leading life as a meditation on hope, a constantly unfolding creative improvisation. I leave viewers at the end of my documentary film to each inclusion shouldn't be a lottery with a reminder that hope lives on, messy, imperfect. I say this because hope takes work. We need to nurture it by meaningfully engaging with others about what matters. Each success fosters our belief in ourselves. If we're hopeful, we're open to other ideas, we're making a difference in others' lives, not just our own. It's my hope that all people will get the support they need to be able to actively participate, not just as individuals, but as a part of something greater than themselves. I'll never stop learning and growing. I hope none of us will. So I'd like to send you off with a brief meditation on hope. I want to acknowledge, hope is not easy. Hope can be hard. It's messy, imperfect and gold. It's gold because it sheds light into our hearts, guides our path, and can even best our fears. It's okay if you struggle to hold hope, realize that's just how hope is like meditation. Hope is messy, imperfect and goal. Let's just pause now for a minute to be with our hope. Thank you.
Ruchika 34:22
Hope. Love it leaving us with hope. You are an amazing poet. The in everything that you've shared today, your poetry comes across the way you think in poem, I guess because you say it so eloquently, is amazing. It's a different way of of communicating than I am used to for myself, because I'm definitely not a poet, but just to hear you speak in the way that you do you. Can you can tell that you're such a poet and thank you. Thank you for leaving us with hope. Thank you for joining us today, sharing your journey and your learnings. We know that our listeners will learn from this, reflect on their own journey and support school communities that they work with to be more mindful of the learners in their schools, and consider being more flexible in their vision who on who and how they think about their students. We look forward to hearing from all of you, our listeners, on how DJs experiences connected with you, how you might consider sharing this with your own communities and the changes you may consider. As always, we will have additional meetings and resources connected with this on our website, urban collaborative.org Please reach out with topics and themes you would like us to share some additional resources on with you. And as always, we thank Keith Jones of Krip Hop for providing the Music. Thank you and thank you so much DJ.