nonspeakerlibrary

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Shannon Des Roches Rosa, for TPGA.

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In 1995, nonspeaking autistic activist Sue Rubin wrote about her activism to shut down the Judge Rotenberg Center , taking inspiration from the worker’s rights activist Cesar Chavez. (It is so enraging how we are still fighting for the same thing now but good to see how people like me have been fight for these things longer than I have been alive.)

Using aversives is as much an assault on humanity as was the poisoning of farm workers. That is why I look to Chavez for inspiration. Like him, I want to organize autistic people to bring abusive situations to light and gain support of the general public, who are unaware of these outrages.

Chavez' struggle taught me how advocates must speak out against injustices and do something about them. He also knew there is strength in numbers and spent his life uniting people.

I hope to reach people by using my computer and sneaking the subject into presentations about my method of typing that I give at special education conferences and college classes. While at a conference in Syracuse NY last month, I discovered the Autism Network International, whose members communicate by e-mail. I have contacted them and hope that we can, together, encourage legislators to pass laws against abuse used in the name of treatment.

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Jordyn Pallett asks the communication partners of AAC users to make sure we are always included in our own conversations , instead of only getting the chance to speak when we are addressed.

I know the job is a big one, but I implore you to look at yourself as CP and keep upping the level to which you disappear and are only an extension of your speller. Instead of wishing your student could participate more, get out of the way and cause it. Changing your own impulses may by challenging, but if we can do the work so can you.

Sorry to be so straight about this, but you didn’t do the work for your student to have a voice only when you think they should. Be a good partner and shift your habits. Let your speller’s voice be unleashed.

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Just because we have a disability, we are not given the same learning opportunities like our neurotypical peers. We are segregated in classrooms where we are taught the same thing repeatedly, irrespective of our age or grade. I was tired of learning the same alphabet and numbers from kindergarten to 5th grade.Just because I could not show my teachers that I could understand everything that was taught to me, they assumed that I was not capable of any intelligent work. I was wrongly diagnosed as having an intellectual disability. Also, because I am nonspeaking, it was assumed that I couldn’t understand anything that was told to me. My parents advocated for a communication device for me for many years,but I was repeatedly denied one by the school district and every time the speech therapist told my mom that I did not have the ability to use it.

I would advise students with disabilities to believe in themselves, and to never give up, and to continue working hard to succeed in their education. I would also advise them to seek a mentor who has a disability they can identify with, who can support and guide them on their educational journey.

Himani, a 12 year old nonspeaking autistic girl who uses an Accent 1000 device to communicate (with both symbols and independent typing) , gives a speech for the Heumann-Armstrong award about the ableism she has faced in education.

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Fox, a nonspeaking autistic boy who learned to communicate with RPM when he was 8, on what autism acceptance means to him.

ACCEPTANCE IS BEING APPRECIATED AND LIKED TOTALLY AS YOU ARE. ABILITY TO TALK AND CONTROL YOUR BODY NOT A CONDITION OF BEING LIKED. ACCEPTANCE TO ME ALWAYS IS HARD TO GET. I AM ACCEPTING OF ALL AUTISTICS AND FEEL IT IS AN EASY THING TO DO SO I HOPE OTHERS WILL TRY IT TOO. I THINK AUTISTICS ARE SUPER FRIENDS TO HAVE AND I THINK AUTISM ALSO CAN BE A GREAT THING TO HAVE. I AM TOTALLY BEING A HAPPY AUTISTIC. ABILITY TO APPRECIATE SO MANY HARD DAYS AND GET OVER SCARY TIMES IN MY LIFE IS POSSIBLE BECAUSE MY AUTISM IS ACCEPTED AND LOVED BY LOVING FAMILY AND FRIENDS. BE ACCEPTING OF EVERYONE, IT ALWAYS THE NICEST WAY TO BE. FINDING GOOD AMAZING THINGS ABOUT AUTISM IS NOT THAT HARD, GIVE IT A TRY.

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Not being able to express oneself is undoubtedly the hardest thing you could imagine, right? In many ways, it is, but not for me. The hardest thing I have ever had to endure was the way I was treated when I didn’t have a way to communicate and people seemed to think I was too stupid to understand what was being said around me. That was awful.

The lack of seeing my potential and the insinuation of being a burden on the system in every conversation outside of my family were enough to make me feel useless. So when I hear of parents who describe their child as being “profoundly autistic,” I hear the stigma folded into it that lets you know the parent’s view about autism. But there’s nothing representing the non-speaker, is there? This is why I believe it’s so important to get feedback from the community being discussed so that it accurately represents their identity.

Sometimes I am totally fine with the way I present in the world; other times I get really overwhelmed, and life gets hard for a bit. But there is never a time when I wish I wasn’t autistic. The world just needs to catch up in the ways we see each other.

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I move on a different frequency, yes a different rhythm.

Please don’t kill me because I’m different. I deserve a chance at a good life. My Black Life Matters.

Instead, celebrate me!

I’m a descendant of the people who built this country you worship, and the ground you freely walk and that flag you love so much that Betsy Ross stole the credit for.

How can you be so mad at me because I want to be free?!

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A poem by Sofi Ghassaei , a nonspeaking autistic poet and playwright , on how she experiences proprioception.

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Matthew McGrath on the dehumanization and cruelty he faced as a nonspeaking autistic person at school , and how schools need to change to support us.

Much can be said about how I spent my time back at my old school. Activities were motivated by keeping all the autistics occupied. People said loosely that I made meek attempts at reading, but my aides never gave me a chance. Many students I saw were treated like nuisances because they couldn’t slow down their mind like some of the kids. People looked at me like I didn’t matter, yet I don’t pale in comparison to them.

Looks may be deceiving. Laughing can mean leering, especially when meaningful teachers, particularly in elementary school, think that the child is cute. They assume lots of things that aren’t true. Teaching a teenager, the autistic bible of task oriented, passive learning does little to stimulate the mind. You best teach him the same as you would anyone who wants to learn. Think of this sadly misunderstood fact: lack of speech does not equal lack of intelligence.

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Sunna-Máret , a nonspeaking Indigenous autistic person with an intellectual disability, on learning how to speak single words aloud as an adult in speech therapy, and why this matters to her for giving consent.

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Mitchell Robins, a nonspeaker who spells to communicate with the support of someone holding the board , on learning to type independently and why it feels different / harder.

Spelling is my greatest strength and when I first tried a stand, it started feeling like a weakness because I wasn’t fluent on it right away like I am with my board or iPad held for me. I have been trying to remember that it took a long time learning to spell on a board and its okay to not be perfect. I can only try my best. I put a lot of pressure on myself, which isn’t constructive. I am learning that the more calm I am, the better my spelling is. I am very successful with independent typing if I manage my expectations of myself.

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I type. And I don't need to always type. I don't need to type when something else is faster. I don't need to type when I have another option. I don't need to type when something else is more natural. I don't need to type if I don't want to. I don't need to always do the same thing.

Sometimes people will start learning to use an AAC method and focus on it, get stuck on it, rather than the more general communication. How do you have people listen, and communicate, and pay attenion, and include you? The focus doesn't need to be one app, one device, one method. There is the question, the idea - how works for you and them and your relationship and getting ideas across and being understood to each other. What's comfortable here, now, with these people, in this situation, in this moment. It's not about an AAC app, its about your communication.

Not everything is words, not everything needs to be words, not everything should be words. Our words are powerful, and our words are ones we use when we want to, and our words are ones we use how we want to. But our words aren't the only communication method that exists.

It's I can do what is right for me, whatever that is, because I am a person.

And I can have relationships with people who treat me as a person.

And its not about one method of communcation, its about communicating, as a person, with other people.

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https://brotherhoodofthewordless.com/we-point/

The Brotherhood of the Wordless hosts poetry by disabled people who communicate using Facilitated Communication. This is one poem by Steven van der Ham:

For words are my friends and letters are my guide

and so, it’s that I will continue to type with pride.

Can I ever speak with any more vigour

or will my words float endlessly away like a river.

Let’s hope they echo through the mountains and valleys,

To remind you all that they are here to stay,

they will not go away,

they are my voice, not by fluke or coincidence

and not by choice

but they are always mine, mine, mine.

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http://www.anniesdandyblog.com/2009/03/york-university-speech.html

Anne Abbott, a nonspeaking person with cerebral palsy who uses a low-tech board to communicate , gave a speech to York University. She talks about how much we are at risk of having our communication took from us and gives advice for communicating with AAC users.

It was only when I started to venture out into the public on my own that I started having problems with communication. Some people were okay; they were patient enough to try to figure out what I was saying. However, there were others that just didn't get me. Right in front of me, I would hear them say things like, “Should she be alone?” I would point to words and letters on my communication board, and much to my annoyance I would hear people saying, “What do you think she wants?” From these kinds of experiences, I learned two things: one, to be patient with people who are actually trying to communicate with me; and two, if people don't understand what I'm all about, and they show me very little respect, I simply leave.

Unfortunately, there are times when a person like me can't just leave. People like me, who use Augmentative Alternative Communication, are frequently, and wrongly, silenced. Because of a lack of patience and understanding, or perhaps even a fear that they'll look ridiculous if they can't figure out what an AAC User is trying to say, people will often take away the person's Communication Device. This happens within the homes of AAC Users, where there is on-site attendant care. It can also happen if AAC Users are still living with their families, and unfortunately, it can often happen in hospitals or in nursing homes as well.

It takes patience and some intuition to start communicating with an AAC user. You have to be good at looking for cues in body language and facial expressions. This is not to say, however, that you're supposed to be a mind-reader. Make sure 100 percent that you got the message from the AAC user absolutely right before continuing the conversation. Use 'yes' and 'no' to confirm that you understood what they said. Also, some AAC users have different signs for 'yes' and 'no,' so make sure you know what they are beforehand.

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The Significance of Involving Nonspeaking Autistic Peer Mentors in Educational Programs

Three nonspeaking autistic college students ( Samuel Capozzi, Dillan Barmache, Emma Cladis) write about mentoring other nonspeaking autistic people transitioning to college , and how important it is to have strong nonspeaking role models when we are entering a place not made for us.

Aside from the advice and guidance I received from other autistic individuals who had achieved my goals, I took great comfort in knowing I was not going into this journey alone. Others had gone before me. I was fortunate to have mentors like that. Other autistic students might not have such a privilege. That is a strong reason that including autistic peer mentors on transition teams should be a high priority. Just the presence of autistic individuals in the higher education system lets students know that autism is respected, and that their value as human beings is institutionally recognized. This can go so far to ease anxiety for incoming students on the autism spectrum and creating an atmosphere of welcome.

As we learned together, ate together, laughed, and shared, we were no longer alone but part of something much bigger and so essential. We came to realize we would no longer be silent, and together we will add our brilliant minds to really lift this world up. Nonspeaking autistic people have a great deal to share, we just never knew until now that others would make room for us.

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https://web.archive.org/web/20041212154014/http://soeweb.syr.edu/thefci/6-3mar.htm

Article by Eugene Marcus about becoming real, becoming human in eyes of the speaking world. About what it means to be and stay a person, what it means to “cure” disability.

All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard.... Eagerness to be like others didn't make Pinocchio real -- it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes "I will be real when I am normal," will always be almost a person, but will never make it all the way.”

Lets work to understand the role some professionals have played in making us lose our ability to be real to ourselves. They have unethically acted like they knew a secret about us that we didn't know about ourselves. How can such a thing really be? Most professionals will never tell us, "This is what I think." Instead, they say "This is what I know." That is dishonest and harmful. In fact, we usually know better than they do what is happening for us, and are only handicapped by not being listened to, or being considered deluded. We need a new kind of relationship, we and our professional mentors, if we are going to make the better world they want as much as we do. Work will begin soon after they admit their limitations.”

We come near to the answer when we are open to the truth that we see a child before us who needs love. We are nearer still when we know we don't have to understand somebody to know he is real. And we are nearest when we come to the realization that the question of being real is not needed when there is love there. At this point we are real to ourselves and real to each other, and the Blue Fairy will never leave us again.”

But think of the power if we put our weird voices and scary bodies on the picket line.

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A blog post I made for other nonspeakers and those who support us, about not separating ourselves from people with intellectual disabilities and what it takes for us all to be free. https://typertremblings.wordpress.com/2024/05/06/nonspeakers-and-cognitive-disability-none-are-free-until-all-are-free/

Intellectual disability does not mean not able to choose own futures, or to communicate, or to learn, or to have inside life and perspective, or to have friends or to advocate. It can mean you need support to do those things (besides the “ have inner life “ part, that part everyone can do on own). That is something I share in common as a nonspeaker who don’t have an intellectual disability: needing a great amount of support to get done what is called “basic”. In the end I don’t really know if I would be considered to have an intellectual disability or not. I don’t know what a doctor might call my mind, besides what they already call it, and don’t need to for solidarity with people who mind is call other things by doctors.

I learned that intellectual disability didn’t mean the cage. Did not mean the low incidence classroom or the private autism school. Did not mean ABA drills. It means the people who were in the cage with me also waiting for their sentence to end . It means my friends and my classmates and the people I went to school and therapies and play group and group respite and adaptive swim with. The people who I couldn’t say I wasn’t like them because of my trauma, because they went through the exact same trauma with me. And I couldn’t say I wasn’t like them because I could use words and I was smart, because they were smart and cool and kind too.

And in our speller and typer utopia, will not be utopia if they stay in the cage while we come out because we are so so different from them. I hope that they can fit in our dreams, even if the world could never call them genius or secret brilliant or intact mind. Even if they can’t spell their way out of the cage they shouldn’t be in the cage. The cage should not exist. We are all real and we all communicate and think and should be free.