Lavender’s Nonspeaker Library

Welcome! This is my collection of posts, writing, art, poetry, research and everything else by and about nonspeaking people, and others with communication disabilities. Because our work and our lives in all their variety need to be shared and preserved.

[nonspeakerlibrary]

What is this?

This is a library of nonspeaking people writing, creative work, and how we share our experiences over time. The full library might be on a Google document, or merge with a toolkit others are making aim at parents of nonspeakers, or post on a separate website. I am still figuring it out! This Tumblr blog is a way for me to figure out a tag system so it is easier to sort by category. I’ll try to include an excerpt that captures the ‘meat’ of a resource in case it gets deleted or you aren’t able to access it somehow. Each resource will be posted separately and tagged with all the things it could apply to. I will have a ‘table of contents’ that lists all the tags soon. And an author and subject index.

This is a living document. Things will be added to it as I read more from my kin and as we keep showing our words and selfhoods to the world. If you have ideas for links to add to this document, please message or send a ask! It may take a while because of my disabilities and time constraints but I will get it uploaded.

A few notes

1. Not everyone I include here would describe themselves as nonspeakers. Not everyone might fit the group most usually called nonspeakers. However it mostly includes writing by nonspeaking autistic people who use partner assisted methods to communicate. That is my own experience but I am trying to add people with a bigger range of disabilities. I am using the biggest and broadest definition of nonspeaking here. It includes other groups like: minimal and unreliable speaking people, people who can use speech sometimes but not always, people who identify as nonverbal instead of nonspeaking, nonspeaking people who are not autistic, and AAC users who do not call themselves nonspeaking. I am not saying all of these experiences are the same thing but I am seeking to put them all in conversation and arrange them in mosaic over time instead of staying siloed off.

2. Some of these links will be written by people who are not nonspeaking, but I still think people should read to understand our lives. I am centering our voices, so I will tag #speaking author and tag the the role they have in our lives (parent, professional, speaking or semispeaking disabled person, researcher, ect). In order to represent people whose best communication is not through words, I will sometimes include links by parents and others who know a nonspeaking person well, who talk about their communication in deep and respectful and curious ways, not by putting it as sad or lesser. If you have issues with a resource I post that is wrote by a speaking person, please let me know.

3. Please do not use my resources to argue about labels for different communication disabilities. Please do not use it to argue about what the people I post from call themselves, whether it is right or not. I will not be hosting any debates here.

[nonspeakerlibrary]

Hi everyone,

The Nonspeaker Library is still active, is still in progress and will keep being updated. I have had less energy to type and using less of it for posting and being online but this project continues!

- Lavender

[nonspeakerlibrary]

https://speakingisoverrated.blogspot.com/2022/09/nadia-sohn-fink.html

Happy Rosh Hashanah! Have a poem by Nadia Sohn Fink, a Jewish nonspeaking autistic writer.

-Nadia Sohn Fink, Rosh Hashanah 5783 (2022) God was a firefly. Harvest moon our witness. God said weave the leaves between the apples from t

God was a firefly.

Harvest moon our witness.

God said weave the leaves

between the apples from the

Farmer's market and the

honey you didn't remember to get—

Recall your grandmother

God said hold her there:

Weave memory and light

Invite everyone in:

their grandmother,

what she always said,

what you forgot to tell her.

It's not too late or early.

Harvest moon nodded,

remembered his mother,

slipped behind the clouds.

God glowed green: Think!

Every thread

that's ever been still is!

Weave your book of life

With everyone's ancestor ink.

[nonspeakerlibrary]

The Stereotypes Killing Us Nonspeaking Autistics

Another autistic person was left to cook alive in a hot vehicle. Far too often, the so-called normal world treats us as disposable.

Anderson’s death is not an isolated incident. About a year earlier, Robert Bodack, a 42-year-old nonspeaking autistic man from Florida, died after being left for hours in the vehicle that was transporting him to his day program. Those like Bodack and myself who are nonspeaking autistics are especially vulnerable in such situations, because we cannot easily advocate for ourselves. Not only can we not cry out for help; most of us lack the fine motor skills to undo seatbelts or unlock car doors.

We nonspeaking autistics are often treated as disposable pieces of humanity—people who, it is imagined, do not suffer like other human beings. This long-standing failure to recognize our humanity is fundamental to the mistreatment that we receive from the so-called normal world.

Even if Anderson or Bodack had been able to type, there is no guarantee that either might have been able to save themselves. Most of us nonspeaking autistics have poor fine motor skills, making it hard for us to communicate, say, by texting because the buttons on cell phones are so small. But in a larger sense, perhaps learning to type would have saved their lives. Being able to write would have enabled them to communicate in their daily lives so that those around them would have seen them as sentient beings—not objects that could be forgotten in the back of a hot vehicle. Moreover, learning to type might have allowed them to live different sort of lives—lives where they were not in a group home or day program in the first place. We will never know for certain, of course, but there is still time for other nonspeaking autistics to liberate themselves from the structures that confine them and keep them from being able to advocate for themselves. The danger is not only a hot car on a summer day but also the policies and stereotypes that limit what we autistics can do.

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Spelling on a letterboard is hard work for our apraxic, disobedient bodies. I need constant reminders to point accurately. I am able to spell for quite some time, but if I become fatigued, my accuracy with my pointing goes down. I feel like that is probably true of almost anyone, autistic or not, but if WE mis-poke or make a mistake, people begin to question our authorship. YOU are allowed to make mistakes, but WE aren’t.

Tell me, what is fair about that?

Some people even think we shouldn’t be able to use word prediction on the keyboard because it may influence what we want to say. But everyone else is able to use it to make typing easier. Being held to a higher standard is like being under a microscope at all times, and I can tell you it stinks. I hate feeling like I constantly have to prove myself. YOU are able to get up and give a presentation in front of an audience without others whispering “so you think he really wrote that?” or “but how can someone who looks like that be able to feel and think that way?”

- Gregory Tino

Spellers Being Held To A Higher Standard | I-ASC

It took me 26 years to find a way to communicate fluently. But it takes 5 minutes for a critic to decide that I am not capable of communicat

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Raising the Bar: How Schools Shape Self-Belief in Nonspeaking Students

I always believed the limitations my school put on me. They were the experts. I didn’t know to question their judgement.

I always believed the limitations my school put on me. They were the experts. I didn’t know to question their judgement.

As I sat in classes with simple topics I assumed it was what I could handle, making things that seemed complex forbidden. Loud voices and simple sentences. Those were the language everyone decided I understood.

But they were wrong.

I didn’t think to question them, but my mom did. She believed I was smart and they didn’t know how to teach me.

Do you all know what it’s like to listen to your mom fight a school system for years, telling them you are smart, and can you imagine actually thinking she is the crazy one because you have completely lost all faith in your own abilities?

Self-doubt is a monster. I didn’t have any for years. That’s how completely convinced I was of my own limitations. Then all that changed.

Learning that other people like me - other people who also talked but said lots of nothing - now found ways to control their little fingers to slow down and point to one letter at a time to spell huge thoughts… this made me doubt my ingrained belief in my own inability.

[nonspeakerlibrary]

Neurodiversity 2.0 - Harnessing cross-disciplinary disability insights

The neurodiversity movement has reframed cognitive and behavioral differences as natural variations rather than deficits, advocating for soc

An important paper by Hari Srinivasan, a nonspeaking autistic researcher about a new model of neurodiversity that serves all of us better and brings knowledge from all disability communities. https://www.sciencedirect.com/science/article/pii/S3050656525001245#bib17

some quotes:

labels such as “autistic” or “ADHD” can provide identity and access to resources, yet when misapplied, they also reinforce marginalization. While necessary, such categories, can reduce complex support needs into static descriptors, particularly when terms like “low-functioning” or “high support needs” become shorthand for “resource-intensive” or “burdensome,” leading to lowered societal expectations and reduced access to essential opportunities.”

For many high‑support autistic adults, “independent living” means residing alone while a rotating cast of Direct Support Professionals (DSPs) provides care—relationships that are, by definition, transient. National DSP turnover runs 40–70 % per year (Friedman, 2020; American Network of Community Options and Resources [ANCOR], 2021), so such autistics repeatedly lose the very people charged with supporting them, resulting in unstable relationships and repeated losses of connection. Service systems nonetheless judge success by how quickly these autistics can be moved out of the family home and into such semi‑independent programs; arrangements families themselves describe as less stable (National Council on Disability, 2020).

A double standard emerges: neurotypical adults—and even “more‑independent” neurodivergent peers—are encouraged to cultivate lifelong family bonds. As one national report notes, “family and friends comprise the most basic unit of any society” (National Alliance for Caregiving, & AARP, 2020, p. 4). High‑support individuals, by contrast, are told that success requires leaving that basic unit, living away from their families, who are often their primary long-term stable relationship, and relying solely on impermanent paid staff. This version of independence is more isolating than empowering. When policies and social norms equate independence with dignity, they render interdependence invisible.

on excluding nonspeakers and autistics with intellectual disabilities from research:

Exclusionary criteria, such as IQ cutoffs and the ability to engage in standardized tasks, have systematically excluded individuals with higher support needs, reinforcing disparities in both research representation and real-world support systems. Importantly, when research defines “evidence-based” without broad inclusion, entire communities are excluded from the very systems meant to support them. Interventions resulting from convenience-sampling research may fail when applied to excluded populations (Srinivasan, 2023c). However, instead of recognizing these failures as limitations of the research itself, they are often misinterpreted as an incapacity to learn and grow. As a result, such students may be placed in low-expectation educational environments and excluded from the same learning opportunities as their peers (Srinivasan, 2023c). This cycle creates a self-fulfilling prophecy where the trend of early exclusion limits future opportunities downstream in higher education, employment, and community participation (Rosenthal and Jacobson, 1968, Higgins et al., 1977). Similar patterns exist in healthcare and employment, where systemic barriers; shaped by incomplete research, continue to reinforce exclusion (Srinivasan, 2023c).”

[nonspeakerlibrary]

Ben B. - "My Own Words: Reflections of a Non-Speaking Autistic

"GETTING IT RIGHT" IT SEEMS TO ME WE NEED TO MAKE A WORLD WHERE PEOPLE MEAN WHAT THEY SAY WHEN THEY SAY THEY ARE "INCLUSIVE". I AM FINDING

A post by Ben Breaux on what true inclusion looks like.

"GETTING IT RIGHT"

It seems to me we need to make a world where people mean what they say when they say they are “inclusive.” I am finding that this statement is often made for political correctness and not actually implemented as originally stated.

It can be very frustrating to live in a society that does not really stand by people like me and my nonspeaking peers when we need them to. I often feel abandoned and alone because my brain and body do not always behave cooperatively and the result of this can alienate me from others. This is a horrible feeling and perpetuates the status of isolation for me and others like me.

So - if you are around someone seemingly ignoring “normal” social nuances and behaviors, please take a moment to assess the situation and see if there is a way you yourself can, in that moment, indeed be “inclusive.”

[anautistic]

A video from Thanh Diep, a member of the Awareness Committee of the United States Society for Augmentative and Alternative Communication (USSAAC), on the importance of bilingual AAC.

[nonspeakerlibrary]

Disrupting the Garden Walls

An inquiry into the technologies of speech-based societies.

An article by DJ Savarese on communicating in all kinds of ways outside of what speech supremacy can think of , and the ableism and speech supremacy built into high-tech AAC systems.

When we choose not to use AAC devices—with their stiff, generic, confining, and inauthentic prerecorded messages—society usually stops offering us other ways to connect and instead declares us “uneducable,” “untrainable,” “asocial,” “unempathetic” and “willingly walled off from the world.”

I have come to think of ableism as the cultivated garden of a speech-based society. Many assistive technologies assume the disabled are outsiders, striving to inhabit that cultivated garden. These technologies don’t change the world we live in; they just allow a few of us to climb up and over the garden wall, helping us pass or pose as independent, able-bodied, speakers. Once in the garden, we are seen as validating the status quo, further fortifying the very walls that many of us hope to dismantle with other technologies, other modes of communicating, other ways of being.

People use the verbal/nonverbal binary to render nonspeakers unheard and therefore invisible. In a speech-centric, hearing-privileged world, we are always seen as disabled, lacking. “Success stories,” maybe; “inspirations,” perhaps—but always on others’ terms.

A high achiever in mainstream education from kindergarten through college, I had come to communicate almost entirely in written English. What, I wondered, might I have lost in the process? I began engaging with the visual artwork of various autistics, eventually compelled by the drawings, paintings, and sculptures of seven artists to write a poetic series. By the last poem, modes of communication had begun to blur as I proudly tell five-year-old impressionist artist Iris Grace that “I’m no longer visual exactly; nor am I verbal. When I type, my fingers speak / with an accent.”

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https://www.artworkarchive.com/profile/gracevt/artist/larry-bissonnette

Links to see and buy artwork from Larry Bissonette, a nonspeaking autistic activist who co-starred with Tracy Thresher in the documentary Wretches and Jabberers.

This article has parts of a speech that Larry gave where he talked about his art and communication access:

Arms pass for doing the race towards supremacy in the world. Lost occupation of creating specially ordered art has disappeared but situation of affirming rights of people with disabilities will vote down platform of space race over pursuit of artistic expeditions for personal pacts of freedom.

Leftist arranger of peaceful paints and letters can communicate. Positions of support for sputtering engines corroded by disturbances of neurological origin need to be enlisted.

On the role of other people’s touch in his communication:

It lands basis for neurological collection of spatial awareness. Ladle of doing language meaningfully is lost in soup of disabled map of autism so I need potholder of touch to grab it.

Sock sandracing into vast beach of expression is not totally accident free.

https://web.archive.org/web/20041024233238/http://soeweb.syr.edu/thefci/7-3bis.htm

Keynote: Larry Bissonnette

[anautistic]

Tyler Fihe talks about his challenges with communication, support, and the ways autism and apraxia effects his life.

[nonspeakerlibrary]

https://neuroclastic.com/therapy-saved-my-life/

Nick Barry writes about the mental health issues that so many nonspeakers deal with and are unable to get support for , and how important talk therapy has been for him.

Therapy Saved My Life

Nick Barry is a nonspeaker who has his world opened up by gaining access to communication, but his emotional needs were not met until he was

Imagine twenty years of built-up negative thoughts that I could never share with anyone. We so often believe our hateful self-talk unless we share it, and the people we love tell us it is not true. Imagine not being able to work your mouth to say anything beyond snippets of your most-watched tv shows.

How many long years were there rolled up around my soul, each one a tight rubber band waiting to snap? Picture me at the center, a balled up tiny human strangled by the unspoken worries and ingrained terrible self-image. Until very recently, I gave up hope that I would ever take off even a single layer of these stressors.

In my present reality, I experience the joys of getting to do the things I love like writing and woodworking. That would not have been possible if I had not learned to type my thoughts.

But I also experience the depths of depression about how much assistance I need to live my life. Typing alone would not have helped with this. What makes the difference between me angrily yelling my displeasure and starting to actually investigate and process this rage is the work I do with a therapist.

[nonspeakerlibrary]

https://awnnetwork.org/my-uncooperative-body/

Amy Sequenzia, a nonspeaking autistic activist with cerebral palsy, writes about her uncooperative body.

My Uncooperative Body - Autistic Women & Nonbinary Network (AWN)

Stubborn. Not very reliable. Hard to manage. This is my body. Sometimes it feels like I don't have any control over it. Sometimes my body ac

[nonspeakerlibrary]

Authors Index A-Z

in case you want to find a post by someone specific or remember a name. i will try to update this as more links are posted

Nonspeakers

Anne Abbott

Adam Wolfond

Alexis' Voice

Alice Wong

Amy Sequenzia

Anantha Krishnamurthy

Anne McDonald

Ben Breaux

Ben Crimm

Ben Kingston

Ben McGann

Beth Moulam

Bob Williams

Bri Guerra Cal Montgomery

Cayden Rainey

Cristian Rosas

Damon Kirsebom

Danny Whitty

David Teplitz

DJ Savarese

Donnie TC Denome

Dillan Barmache

Emma Budway

Emma Cladis

Emma Studer

Emma Zurcher-Long

Eugene Marcus

five-thousand-loaves-of-bread

Fox Talks With Letters

Graciela Lotharius

Grant Blasko

Gregory Tino

Hari Srinivasan

Henry Frost

Himani Hitendra

Huan Vuong

Ian Aronow

Ido Kedar

Isaiah Grewal

Jeremy Sicile-Kira

Jordyn Pallett

Jordyn Zimmerman

Justice Killebrew

Julia Griffith

Kaishawna Fleming

Kate Caryer

Liam Paquin

Luke Verhoeff

Matteo Musso

Matthew McGrath

Max Eati

Mel Baggs

Mike Hipple

Mitchell Robins

Nick Barry

Nick Pentzell

Nicolas Joncour

Nicolaas Paulsen

Niko Boskovic

Noah McSweeney

Noah Seback

Otto Lana

Patrick Saunders

Phillip Reyes

Rachel Kripke-Ludwig

Rhema's Hope

Richard Attfield

Riley Grace Miller

Roses are Red for Autism

Samuel Capozzi

Saoirse Tilton

Sharisa Joy Kochmeister

Sid Ghosh

Sofi Ghassaei

Steven van der Ham

Sue Rubin

Swarit Gopalan

Tejas Rao Sankar

Trevor Byrd

Tuttleturtle

Typer Tremblings

Tyrone Cook

Speaking Authors

Edlyn Peña

Kerima Cevik

Rosemary Crossley

Shannon Rosa

Tara Sayuri Whitty

[nonspeakerlibrary]

A presentation that Matthew McGrath gave for a national autism conference in Canada.

Presentation – National Autism Strategy Conference

I wrote this video to teach people that nonspeaking autistics deserve to be heard. Please watch and learn about us. Trigger warning: sexual

I wrote this video to teach people that nonspeaking autistics deserve to be heard. Please watch and learn about us.

trigger warning: sexual assault

[nonspeakerlibrary]

The Dos and Don’ts of Communicating with a Speller - Part 2 | I-ASC

Hi world, my name is Jackson.  I am a charismatic and hilarious 16 year old autistic teenager who communicates through spelling.  I will be

Jackson Khabra , a nonspeaking teenager, gives some tips for interacting with people who spell to communicate.

DO allow me to be the first person to communicate sometimes. I love when you ask me questions but sometimes it is nice for me to lead the communication. I always have a lot on my mind, so it is amazing when I get to share that with you. What that might look like is: you approaching me, saying Hi, and just waiting to see if I have something to say. Nothing says “let’s chat” better than a warm smile and an invitational silent moment. This dovetails nicely to my next point:

DON’T be afraid of awkward silences. News flash – they are only awkward to you. For me, as a speller, silence equals opportunity to get involved in the conversation. Silence means inclusion for us. Without that key ingredient, honestly there’s no point even trying.

DO look at me while I type (spell). There is a logical reason for this. You may not realize this but a great deal of the meaning of speech comes from how you say something. This is quite obvious to us as we are unable to speak and provide context in the same way you do. We do provide plenty of context in different ways. How we do this is subtle so pay attention while we spell to get the full meaning of what we are saying.