Neuromedia Summer 2021

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

Curated blogs – for core concepts in Disability Justice and Neurodiversity.

Ann Jusino, Lakshmi Rao Sankar, Monica van Schaik

When we launched the first Neuroliterature Summer Campaign in 2020 we focused on the fact that there were not enough authors, stories, books, and characters who were neurodivergent. While the world was turning towards inclusion, it felt like people tended to have a monolithic perception of who neurodivergent people are and that there was a need for diversity of representation of neurodivergence in the media. We were also interested in expanding access to reading and the immersive experience of letting yourself dive into a good book. This is why we spoke to the need of consuming literature in accessible ways – being read aloud to, using screen readers, and using audible narration as options – to name a few.

This year, we shifted from the term Neuroliterature to Neuromedia. Internet content, podcasts, and TV shows profoundly impact the formation and expression of ideas, our sense of self, and our relationships with others. Our Neuromedia campaign for 2021 includes books, blogs, podcasts, and TV shows! 

We are also reimagining the way we will release our campaign. We know that there are other summer preoccupations in a newly opened (or somewhat open) world.  We will be releasing our recommendations over the summer months and they will be spaced out, giving everyone a more leisurely yet richly rewarding consumption of Neuromedia. 

And so here we are, at the first release of our summer campaign. This issue features blogs we recommend to all of you in our community – speller, ally, practitioner, parent, family, and well-wisher.

S2C pedagogy forms the core of our understanding of communication access and regulation for nonspeakers. It has been shaped by communicating with spellers in our practices, and by spellers who review our pedagogy. The I-ASC’s S2C Practitioner Training, as well as the blogs and seminars created by I-ASC, forms its central core. This work is in turn embraced by spellers and finds expression in the homes of spellers with parents and other communication regulation partners. It has taken root in some institutions of learning, disability movements, like the Spellers and Allies Advocacy Network, and in the practice of S2C registered practitioners. Within these communities, we are having many important conversations that reinforce and expand what I-ASC’s vision is about – Access, Autonomy, and Agency. 

In these conversations, we have found that people were using some ideas interchangeably and differently. There is a need to use some core beliefs in a consistent fashion so that our collective message is united and strong. We have taken this opportunity to bring to you the following blogs written by thought leaders in today’s disability justice and neurodiversity movements. We hope these curated readings will shape a newer, revitalized spellerverse aligned with these ideas and thoughts. Spellerverse is a term coined by Elizabeth Vosseller to depict everyone who is an ally or a speller in the minimally speaking unreliable speaking or nonspeaking community. 

  1. We lead with Mia Mingus’ description of ‘Access Intimacy’. In the blog Leaving Evidence: Access Intimacy, Interdependence, and Disability Justice. Mia Mingus is an American writer, educator, and community organizer whose focus and passion is in disability justice.  Her approach is not just acceptance and inclusion with the privileged (non-marginalized) but dismantling established systems of exclusion, and marginalization.  Mia Mingus describes access intimacy as follows: S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM

    Access intimacy is that elusive, hard to describe the feeling when someone else “gets” your access needs.  The kind of eerie comfort that your disabled self feels with someone on a purely access level.  Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years.
    The scientific community and ableist systems lack access intimacy according to Tejas Rao Sankar, 23, autistic.   Getting access intimacy in the people around us, he says, is the autistic person’s most valuable ‘get’. “Mia Mingus” he says. “ forges thoughts useful to us. Wanting access intimacy is the lived experience of autistics.’

  2. Christine Miserandino is an award-winning writer, blogger, speaker, and lupus patient advocate, as well as a board member for the Lupus Alliance of America (national and Long Island/Queens affiliate) and member of the Society of Participatory Medicine.  Christine is the originator of the expression “spoon theory”, created as a means of communicating the experience of living with chronic illness. In The Spoon Theory by Christine Miserandino, Christine tells the origin story of ‘spoon theory,’ which was how she explains what living with Lupus is like to her best friend. Notice how shocked Christine is when she realizes how little access intimacy her closest friend has, despite seeing and experiencing how Lupus has impacted her life first hand. Being someone’s best friend, sharing their lived experiences, does not, as disabled people know, automatically confer access intimacy. Quickly, Christine’s metaphor was adopted by the disability community because it resonated so resoundingly. Read this origin story to see if the metaphor works for you as a speller, or for a speller you know. Does it help generate access intimacy? Can we come up with more metaphors to describe varied experiences within the spellerverse?

  3. Hari Srinivasan, is a minimally speaking autistic and student at the University of California, Berkeley, majoring in Psychology and minoring in Disabilities Studies. He is actively involved in college life, including working as a student instructor, research assistant, and president of Spectrum at Cal (UCB student organization), as well as serving as a board member for the Autism Self S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMAdvocacy Network and an advisory board member for the Autism Society of America.  In a Boy Like Me  Hari speaks to the need for an authentic, nuanced, and diverse representation of nonspeaking individuals and autistics. Stereotypical representation with negative plot lines serves to stigmatize nonspeakers and can generate low self-esteem.  Ultimately leading to maintaining neurotypical as the desired norm and legitimizing the exclusion of nonspeakers from community, education, and other areas of agency. We know well, from nonspeaker authors that this, in turn, repeats the cycle of judgment and low self-esteem.

  4. Dr. Nick Walker is an associate professor at the California Institute of Integral Studies, a researcher, the managing editor of the indie publishing house Autonomous Press, and S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMaikido sensei.  He is a forward thinker in the neurodiversity movement.  In his blog, Neurocosmopolitanism, he provides an excellent and clear tabulation of  Neurodiversity – Some basic terms and definitions. People often confuse the terms neurodiverse and neurodivergent and often misuse them. He says that as we create new paradigms, we are creating a new language. His desire to articulate this with such clarity is welcomed and embraced. When we try to articulate the invisible and the unrepresented, our choices have to stay consistent and clear, otherwise, we lose the important message that comes with new terms. We can honor the work of neurodivergent advocates by taking the time to learn and understand these terms.

  5. Aiyana Bailin is a blogger, tutor, and caregiver for children with assorted developmental disabilities.  She has served as a court-appointed educational advocate and a leadership board member for the Students with Disabilities Coalition at the University of California, San Diego.  In her Scientific American blog post entitled Clearing up some misconceptions about neurodiversity Aiyana Bailin writes a response piece to Simon Baren-Cohen’s assertion in The concept of neurodiversity is dividing the autism communitythat the neurodiversity movement ignores the disabling aspects of autism and emphasizes the differences.  She says, “When we talk S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMabout “not pathologizing autism,” we don’t mean “pretending autistic people don’t have impairments.” But we also don’t assume that neurological and behavioral differences are always problems. For example, there’s nothing inherently wrong with disliking social activities. Not wanting to socialize is different from wanting to participate and being unable to. Both are possibilities for autistic people. One requires acceptance, the other requires assistance. Sadly, I have yet to meet a therapist who doesn’t treat the two as equivalent and in equal need of correction.“  We want to note here that Aiyana Bailin’s commentary needs to be viewed from a lens that talks about nonspeaking people in a way that doesn’t align with S2C pedagogy. A clear symptom of the fact that our message needs to reach further.


We hope you enjoy these blogs and the exploration and examination they will lead you to.

Have the best of summers!

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMLakshmi Rao Sankar, lives in Brooklyn, has a dog named Obi, and is a passionate gardener. She loves reading. She loves second – hand book stores –  the sensory experience of handling a physical book, smelling them,  discovering the name of their previous owner on the flyleaf.

 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMAnn 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.

 

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPMMonica van Schaik (member of the I-ASC Leadership Cadre and coordinator of Spellers & Allies Advocacy Network) is an S2C Practitioner living in Kitchener, Canada. 

 

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through trainingeducationadvocacy and research I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association

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