A second part to the Neuromedia 2021 series.
Ann Jusino, Monica Van Schaik and Lakshmi Rao Sankar
I-ASC’s July 14th blog, How We Think About Disability Matters discussed the impact of various disability paradigms on how we think, feel, and act in relation to disability. This week, we bring to you stories that put this theory into living, descriptive and compelling narratives that you won’t want to miss. The books selected seek to spotlight the visions, dreams, and perspectives of autistic and nonspeaking people directly, aligning with the neurodiversity paradigm. Lulu illustrates the importance of having one’s identity understood by the world around them in Lulu is a Rhinocerous and when Flom Flom flies in, the pair stretches its readers to see beyond goals and norms of independence into the magic of interdependence. Nova captures the paradox of living in a world where some people only see your problem, as their perspective is blurred by the medical disability paradigm, while others see your potential in The Plant Earth is Blue. Gregory Tino invites the reader to really reimagine what our society envisions as wellbeing for nonspeaking autistic people through his critical insights in The Autistic Mind Finally Speaks. Tino describes the transformational power of having a means to effective communication. Underestimated, written jointly by JB Handley and his nonspeaking son, Jamison Handley, with contributions from five other nonspeaker “Dude Bros” is a powerful story of a father and son’s journey to gain access to communication. Finally, we offer you an adventure to reveal your own bias, internalized norms, and assumptions with an afternoon with Sincerely Your Autistic Child in which Ballou, daVanport, and Onaiwau dig deeper and share what they wish their parents had known about them.
We hope that you enjoy the adventures that you choose with these literary gems. And after, we invite you to stop and think about how you want to think, feel and act in relation to disabled identity—your own, a loved one, or your clients’.
Sophie Corrigan
Lulu is a Rhinoceros (2018), a children’s picture book written by the father/daughter team of Jason and Allison Flom, is a book about identity and tolerance, and most crucially, acceptance. Lulu knows exactly who she is – a rhinoceros, not a dog, as the world around her believes her to be. There is no ambiguity regarding her identity in her mind, she doesn’t think she is a rhinoceros nor does she want to be one, she knows she is a rhinoceros. It is those around her who deny her identity, insisting she is a dog. She believes she is missing her horn, but as the story unfolds, it is the relationship with the tickbird Flom Flom, representing the vital interdependent relationship which allows all living beings to survive and thrive, that she has needed all along. This is a book for anyone who has been bullied, left out, or made to feel different because of the way they look, the way they feel, or the way they are. The reader is asked to replace curiosity with judgment, in order to allow themselves and those around them to live as their true selves.
Lulu is a Rhinoceros is not only a story for children, it is also a story for parents, teachers, and professionals. Neuroclastic teamed with the authors to discuss the insights about interdependence and presume competence that this story holds. Read more here about the reflections and insights here in their Note for Parents, Teachers and Direct Care Professionals.
The Planet Earth is Blue (2019) is a book about Nova, a 12-year-old nonspeaker. Nova navigates a foster care system, a new school, and a new family, in the absence of her older sister Bridget. Bridget has always known that Nova is competent and is absorbing everything around her. Her new family and school know nothing of her competence, and treat her as intellectually incapable, since she has no way to express herself. All her school tests, designed in the context of a paradigm that believes nonspeaking autistics to be incompetent, rely heavily on speech. Nova’s journey to find her sister, and eventually, be understood as a capable individual, is beautifully told against the backdrop of NASA’s Challenger launch. The story moves back and forth between Nova’s childhood with her original family and her foster family. You experience in real-time her inner experience of being behind the wall of a silence imposed on her by her neurology.
The author Nicole Panteleakos, is autistic (diagnosed as Aspergers before, with the consent of Aspergerians, the classification was rolled into Autism). Paneteleokos took a while to discover her diagnosis, which she found as an adult. She writes in ways that nonspeakers have described as true to their own internal experience of being autistic. This is true of situations where Nova is being tested at school, is overwhelmed by sensory stimulation, and strong emotions. Panteleakos gets presume competence and the experience of being nonspeaking. However, she uses the term nonverbal since she hadn’t yet discovered our shift away from the usage of nonverbal to describe nonspeakers. Our community moved away from the term nonverbal since in Latin the word verbal denotes belonging to words. We know nonspeakers have words, but not speech, hence the term nonspeaking. Bridget, Nova’s sister, articulates this, when she says, ‘My sister is a thinker, not a talker”.
The Autistic Mind Finally Speaks (2020) is a book written by Gregory Tino, a 28-year-old nonspeaking young man with autism. Tino, who went 25 years without an effective means of communication but with a keen wit and full understanding of the world around him, was introduced in 2017 to “Spelling to Communicate” (S2C), a communication method that gives nonspeaking people a method to communicate through point to letters on a letterboard. The practitioner was Elizabeth Vosseller, the developer of S2C. This communication method gave Gregory a voice and ultimately led him to pen this first-hand account of his experience with autism. The book takes a deep dive into his experiences, his memories, and his hopes and dreams, contrasting his silence to his full-spectrum communication. Tino personifies his neurodivergent state through the use of the phrase “Autism and I”, a unique entity both separate from himself and an integral part of who he is. Tino’s eloquence and honesty regarding the challenges he faces managing his body,“I am an autistic man with a crazy body that has a mind of its own,” (p. 30), are enlightening to readers who might assume they understand the autistic experience from what they see and hear. His instructive and informative tone in addressing the misinterpretations of his actions and words are deeply meaningful to the reader; he is as much an observer of his autism as those around him are, making the use of “Autism” in the third person in his book even more poignant.
Tino is also the author of the book The Land Called Boring (2019) which is a lyrical and artistically represented retelling of his journey to open communication using a letterboard. Each page is beautifully laid out with artwork and lines that depict with emotional precision Gregory’s experience as a new speller. The Land Called Boring is an excellent book to validate the experience of a new and young speller or to help explain and spark conversation with child siblings to spellers. We know it is important for the whole family to understand what is happening when reliable communication comes into a nonspeaking person’s life.
Underestimated (2021) is a powerful recounting, powerfully told by JB Handley and his son Jamison as they begin their journey from first hearing about a friend’s son, spelling to communicate and seeking it for themselves. Underestimated is both incredibly moving and yet, a matter of fact. Hope dies hard in the lives of nonspeakers before they access communication. It’s a rinse and repeat cycle of trying different avenues to improve their circumstances. This death of hope is what Jamison wants to spare other nonspeakers like himself. From being Underestimated and living a life with no self-determination Jamison is well on his way to – we’ll let him tell you where he is now and where he hopes to go. Like Jamison says, it’s really not a miracle at all that he can spell to communicate. That’s the premise of the book. No nonspeaker should be underestimated again, no nonspeaker acquiring spelling to communicate should appear to be miraculous. The 5 companion pieces by his friends – nonspeakers like himself, the dude-bros are all-powerful testaments to the premise that nonspeakers are unilaterally underestimated and are profoundly proving that that estimation is flat out wrong.
Sincerely Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew about Growing Up, Acceptance and Identity (2021), edited by Emily Paige Ballou, Sharon daVanport, Morenike Giwa Onaiwau, leaves the reader at a loss for words, but with such an array of emotions that whisper in the reader’s ear long after the book is finished, inviting them to confront again and again what they know to be autism, forcing them to look beyond what they see and believed they knew to the deeper truths of those for whom autism is a lived experience, and challenging the paradigm they have come to recognize as autistic. More than just an addition to the plethora of literature regarding the autistic experience (often written by therapists, physicians, researchers, or well-meaning parents giving observational accounts of autism), this is a primary source document written by those that must be the ones to write this. They are the voices of ‘nothing about us, without us’ at long last. Each section is handled with grace and understanding, but with an honest assessment of the stages and issues of a life truly lived as an autistic individual– childhood and education, acceptance and adaptation, identity and community. Each chapter conveys the basic need for acceptance, for integration into the community around them, and how desperately the authors wish their parents to know that beneath the surface is the beating heart of a fully actualized human, resplendent with all the emotions, wants, and needs as the world around them. Each resounds with an outcry against ableism and the culture of services directed by “experts” without input from the autistic individuals themselves. This is an accessible read and a powerful treatise in support of the “nothing about us, without us” movement.
Lakshmi Rao Sankar is a member of the Leadership Cadre at I-ASC. She leads practitioner training cohorts with I-ASC, writes and presents on core S2C foundations and techniques. Lakshmi is based in NYC and has a practise in Spelling to Communicate. Lakshmi provides spelling to communicate services to nonspeakers, as well as parent and CRP coaching.
Monica van Schaik (member of the I-ASC Leadership Cadre and coordinator of Spellers & Allies Advocacy Network) is an S2C Practitioner living in Kitchener, Canada.
Ann Jusino has a 30 year career as a librarian in public and academic settings. She is a mother of a nonspeaker, is a scholar and a neurodiversity advocate. Ann is an ardent reader and an S2C Practitioner in training.
