A Boy Like Me, a Netflix Series and 2 podcasts

A Third part to the series on Neuromedia 2021

Part 1Curated blogs – for core concepts in Disability Justice and Neurodiversity.  

Part 2  Neuromedia  Summer 2021 Book Recommendations 

We open our final installment of the three-part neuromedia 2021 campaign with a review of Hari Srinivasan’s op-ed titled A Boy Like Me in The Disability Visibility Project. This project is founded and directed by disabled activist Alice Wong. The project’s mission is to create, share and amplify disability media and culture.  Hari is a nonspeaking autistic, and in this piece, he begins with dismantling the representation of autistics in Sia’s MUSIC film. Hari writes that the autistic person has a meltdown, for the sole purpose of depicting the depth and emotional range of the character who has to deal with the meltdown. The autistic person is seen only as someone who has a meltdown.  Hari then moves on to address the issue of representation itself.  He breaks down what it is like for a nonspeaker who uses an augmentative device to communicate, in real-time, with a speaking person. It allows us to momentarily inhabit that neuro-sensory place we have no experience with. A place that we need boys and girls like him to depict, share and amplify. 

Hari follows up his critique with actionable solutions. He recognizes that we lack sufficient nonspeaking actors to showcase their representation. However, he points out that they can be involved in creating what that representation should look like. Finally, and powerfully, he calls out the fact that nonspeaking autistics are invisible in mainstream society, not just in the media. He has a call to action to address this extreme invisibility that we invite all of you to respond to. 

A Netflix Series: Love on the Spectrum

Image Source – IMBd

We decided to present our views on this series, curated from the reviews of autistic people. The series highlights the fact that Autistics are seen as people who have the same needs as all people. To love and be loved by an intimate partner is not a special need. However, this evolution comes at a cost, as it continues to uphold deeply flawed and damaging views on Autistics. 

Reality TV is complicated, scripted and yet somehow sneaks past your intellect to your gut to make you feel you are experiencing something authentic. Which is why, when you encounter a scene that plays to your gut, you are still left holding some questions. For instance, let’s talk about the scene where a dad asks his Autistic daughter to go powder her nose, in case she needs to exit the date. The daughter responds by not getting the metaphor, she takes it literally and says she never powders her nose. Her dad then explains the metaphor. The scene so obviously feeds into Autistic tropes, you wonder – Was that scripted? Was that real? Who knows! 

In her blog, C L Lynch addresses what the usage of the term ‘Spectrum’ does to the Autistic community. It allows for us to view Autism with an ableist lens, valuing those who can make eye contact, and speak. We are unaware that we are doing them a disservice because we do not realize how severely impacted they are in, for example,  executive functioning and how much they are impacted by this disability. On the flip side, C L Lynch says, we devalue those who are nonspeaking, unreliably speaking, and minimally speaking as unilaterally severely impacted by the presence of movement and sensory differences  ( stims, movement, absence of eye gaze, lack of speech). We assume they are disabled across all skill sets. We assume they can’t think, feel or do tasks like read, or go to school. This core issue comes up, in the series,  as autistic actors offer up their own self-diagnosis as mild. It shouldn’t come as a surprise that autistics internalize a value system that neurotypicals have systematized. 

Sara Lutterman in her blog, It is kind but unrepresentative, found the portrayal of autistic people not reflective of Autistics, but notes that the series is kinder, and not as brutal as other reality dating shows. She points out, as we noted, the refreshing representation of Autistics who are queer. 

In complete contrast, Kerry Magrow gave the series an unqualified thumbs-up and a wholehearted endorsement. He found that it was an empathetic portrayal of autistic people and mirrored his own struggles with relationships. Read his review here – An Autistic Man Reviews ‘Love on the Spectrum’

Charli Clement in As an Autistic person Netflix’s Love on the spectrum let me down, found the show both ill-advised and disappointing. She examines the paradigm from which the relationship coach operates.  The coach, she writes,  essentially coaches all the naturally occurring engagement that autistics exhibit, out of the date. Asking autistics to imitate neurotypicals leads to masking, and is a constant source of mental strain on anyone with autism. It also establishes the normative view that the only right way to interact is the neurotypical way. A significant concern that Charli has with the show is that it creates a separate world for autistics. They are, through the show, always only on dates with other autistics.

We think the show is worth watching because it does take a step in the right direction, even as it upholds and promotes masking, ableism and showcases the infantilizing and lack of autonomy the autistics experience. We are never going to make progress if we beat up people for evolving incompletely. Let’s celebrate progress, as it winds its way to a more equitable place. 

2 Podcasts

How to Become Batman

Alix and Lulu lead listeners through a curated journey of having our expectations stretched, questioned, and challenged. Nervousness, curiosity, and amazement arrive throughout this episode of Invisibilia that explores how our expectations limit blind people from learning to see. That’s right, see!

Challenging our own expectations is fundamental to Spelling to Communicate. The scientists who have looked at Daniel Kish’s brain discuss that his ability to see while blind makes sense from a neuroscience perspective— it is not a miracle at all. The same goes for nonspeaking, minimally speaking, and unreliably speaking people. It is not a miracle that they can spell to communicate, it is a skill that they can practice and develop— that is if those around them shift their expectations, give them the time to practice, and believe in their ability to learn.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, trainingImage source: https://www.npr.org/2011/03/13/134425825/human-echolocation-using-sound-to-see
  1. Uniquely Human (Episode 16) – Nonspeakers Have A Lot To Say: Are You Listening

On the podcast Uniquely Human, hosts Barry Prizant and Dave interviewed Elizabeth Vosseller, Executive Director of I-ASC and the creator of Spelling to Communicate (S2C), and Ian Nordling, a minimally speaking individual who communicates by spelling on a letterboard. Elizabeth begins the podcast by clarifying the difference between speech and language; “Language is in your head; speech is what comes out of your mouth.“  There is a history of acceptance of nonspeakers who have had strokes or cerebral palsy, yet when faced with nonspeaking autistics, the assumption is a lack of cognitive capacity based in their inability to control their speech and body.  “We have been trained to believe that poor eye contact and body control equate low intelligence.” While the podcast restricts the listener’s ability to see the conversation between the participants, EV conscientiously spells out each letter that Ian is pointing to on a laminated letterboard so that the listener can visualize how Ian is communicating even though he cannot be seen.  

Spelling, like any other skill, takes many hours of practice; what Ian is showcasing came with years of work.  “I had years of practice being silent. [I am] well regulated now but not always.  This has come with motor practice and communication.  [Spelling] is tiring and I am excited to talk to you so that affects my motor [control].” Spelling is a full-body physical effort, lending sincerity and import to what he has to say.  

EV and Ian speak about their relationship.  The relationship with the communication partner is not just about the communication but the regulation as well.   Keeping the speller regulated, that is, relaxed and calm, and focused, takes time and trust.  Regulation is vital for communication. Ian demonstrates this truth in his words “I trust Elizabeth completely”

With every sentence he spells, Ian shatters more of the myths of autism that have been around for years. “The most loving thing you can do is to hear my words and believe them” Ian instructs listeners. Listening is a skill that nonspeakers are highly practiced at, and Ian makes the point that because spelling takes time, and talkers need to slow down and take the time to listen to their words. “There is so much to learn if only we listen.”

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, RPMLakshmi 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. 

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

 

Posted By on Wednesday, September 15th, 2021 in Autism,Community,Education,Families,Nonspeakers,S2C,Spelling to Communicate

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