When You Listen to the Voices of the Non-Speaking
We have a strong but erroneous tendency to equate not being able to speak with lack of intelligence. When a child is growing up and their speech does not develop, we tend to make the assumption that the child is stupid. This is reinforced by the fact that our normal intelligence tests (IQ) tend to be biased towards verbal intelligence, and if you can’t speak, you get a low score just by the nature of the test.
While on the surface someone proficient in speech may believe this is a reasonable assumption, the more deeply I think about it, the less the idea that being able to speak is a requirement for intelligence and communication passes muster. Consider Steven Hawking, who lost his speech in 1985 and communicated entirely through devices until he died in 2018. No one doubted his intelligence or thought that he somehow became stupid for the last 33 years of his life. Similarly, while the accounts differ, there is general agreement that Albert Einstein developed speech much later than most people, yet there are no doubts about Einstein’s intelligence. On a more analytical level, if I consider the process of ‘learning’ in three parts — listening, understanding, and communicating that understanding back — then not being able to speak only really impacts the third part. In actuality, the learning process itself only requires listening and understanding.
Speaking requires many different capabilities to work together, many of which have nothing to do with innate intelligence. For instance, you need to be able to think in words or translate your thoughts into words. Yet, not all people think in words. Some think in patterns, or visually in movies or images. When you do not think in words, you need to be able to translate your thoughts into words. Secondly, you need to be able to pace your thoughts and your mouth together. If your mind is moving too quickly, you may forget the point in your thoughts where your mouth is speaking. Another point has to do with motor coordination — you need to be able to move your mouth and engage your vocal cords in the way you want in order to produce sounds, you need to get the tone and pronunciation right and the syllables all in the correct order, all while still remembering to breathe. People with apraxia have trouble with this kind of coordination. Also, anxiety or sensory challenges may mean that a person needs to be comfortable with the people they are talking to and/or the setting they are talking in as a precursor to being able to speak. This is called selective or situational mutism. While this is by no means a comprehensive list of challenges, it gives a flavor for the different barriers to speech that may occur.
Thankfully, with the advent of communication devices and a better understanding of how to support people through some of these barriers, non-speaking people are now able to communicate in ways that speaking people can understand. In the past year, I have read several autobiographies and other writings authored by or in collaboration with non-speaking people. In this article, I would like to cover four things that the non-speaking population consistently states that they long for — connection, safety, education and participation in society.
Connection
As I have read many of the writings of the non-speaking population, one of the huge things I see them talking about is directly related to the need for communication capabilities to support their ability to connect with other people, to express their needs and to empathize with others’ needs, and to contribute to society in general. In his autobiography, Ido Kedar expresses it this way:
The hardest part of autism is the communication challenge. I feel depressed often by my inability to speak. I talk in my mind, but my mind doesn’t talk to my mouth. It’s frustrating even though I can communicate by pointing now. Before I could, it was like a solitary confinement. It was terrible having experts talk to each other about me, and to hear them be wrong in their observations and interpretations, but to not be capable of telling them.
Ido points out that not only do we need communication to feel connected, but also that communication is necessary to be understood and to express our needs so they can be met. Often, nonspeaking children are left alone with caregivers and teachers who do not understand the real impact their interactions are having with the non-speaking child. Even the most well-intentioned carers and teachers may have vast misinterpretations of the attempts a nonspeaker is making to communicate. For example, we often look at a person who is moving and wriggling and think this is from boredom or from a desire to escape a situation, or as evidence that they are not paying attention. A parent may respond to a wiggly child by trying to calm them down, or by trying to distract them. However, Naoki Higashida answers the question, “Why can you never stay still?” with a completely different explanation. He says:
My body’s always moving about. I just can’t stay still. When I’m not moving, it feels as if my soul is detaching itself from my body, and this makes me so jumpy and scared that I can’t stay where I am. … I’m always struggling inside my own body, and staying still really hammers it home that I’m trapped here. But as long as I’m in a state of motion, I’m able to relax a little bit.
Safety
Non-speakers are frequent targets for bullying and abuse. When family members, carers or teachers are abusive, the nonspeaker has no means to communicate their experience and their side of a story. Children with developmental disabilities are more than twice as likely to be abused as people in the general population, and more likely to be abused more frequently, for longer periods of time, and by a carer or someone they know [Abuse and Exploitation of People with Developmental Disabilities]. Non-speakers are especially vulnerable. When they have been bullied or abused, their only choice is to communicate through behaviors that are often misunderstood or interpreted as ‘bad behavior’ that needs to be addressed. Attempts to ‘correct’ the behavior can lead to further trauma. For example, the person could have a meltdown when being sent into a place where they were being abused — having no other real option to communicate about the abuse. Yet, that meltdown may be interpreted as some form of deliberate, rebellious behavior that should be ignored. Ignoring that behavior, however, devalues the person and leaves them open for future abuse.
Peyton Goddard puts it this way (Note: FC is Facilitated Communication):
First, without a voice, never are people safe; second, … a voiceless person is easily and unbearably frustrated by behaviors they must resort to and the often incorrect interpretation of these behaviors. With FC, I finally gained a mode of dependable communication, which allowed me to tell the truth of my life and begin to relieve the fear which plagued me.
— I Am Intelligent: From Heartbreak to Healing. Peyton Goddard, June 2012
Education
Without the ability to communicate what they know and perceive, we often assume that the non-speaker does not understand and is therefore intellectually disabled. Ido Kedar describes years where he was sitting in a classroom being asked to point at the blue card, knowing full well what the color blue was, but being unable to get his finger to point in the correct direction due to his apraxia. Several non-speakers whose autobiographical writings I have read talk about that ‘aha’ moment for their parents and educators when a non-speaking person was finally able to use a device to communicate what they were thinking, and then could communicate how much they really had learned. An example that is fairly typical from my readings is this one, from Hari Srinivasan, who is now a student at UC Berkeley:
By middle school I had been placed in a segregated non public school which was to be my life till I was 22 and then be sent to an adult day program for the rest of my life.
Education and the chance to be a contributing member of society was like a candy store with me on the outside looking longingly in. Finding a way to communicate and a charter school was what gave me that alternative access to mainstream education as a teenager. The psych-ed assessment conducted by my charter school when I first joined, placed me at college level english and at 12th grade math. … I made valedictorian in High School. How about that!!
Access to higher education for individuals like me is hard-won and I am now absolutely thoroughly enjoying and just savoring my undergraduate years at UC Berkeley and all the opportunities it has opened up.”
Representation
One of the key lessons I have learned from the non-speaking population is that their experiences and understanding are so different and complementary to the experiences of the speaking population that when speakers try to understand them or represent their experience they often get it vastly wrong. Yet the speaking population tends to ignore or talk over the non-speaking people. This devalues them and demeans them. Rather, we need to figure out a way to bring their experiences and understanding into our own day to day society, and to learn from them how best to leverage their unique strengths, skills and perspectives.
CommunicationFirst’s short film, Listen, was produced recently in response to the releasing of a movie about a non-speaking autistic person that was produced entirely without consulting any actual non-speaking autistic people (or any autistic people for that matter). They say:
If you always leave us out, people think we are not able to participate. That’s why most people don’t realize that we have a contribution to make. … Ask us. Listen to us. Nothing about us without us.
Connection, Safety, Education, Representation. These are basic and inalienable rights that have long been denied to the non-speakers among us. So today, on Autism Awareness Day, I want to encourage you to listen to the voices of the non-speaking people. They have a lot to say.
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Notes on the People Quoted in this Article:
Ido Kedar graduated high school with a GPA of 3.9 and is in college. He communicates using a letter board or by typing on an iPad. He learned to type independently on an iPad to refute skeptics who thought his facilitator was the one actually typing when he was using the letter board.
Naoki Higashida was 13 years old in 2007 when he wrote The Reason I Jump. He learned to communicate using an alphabet board. He continues to write books, fairy tales and poems.
Peyton Goddard is an advocate for inclusion in education and society. She graduated from Cuyamaca College as class valedictorian in 2002. Peyton learned to communicate on a keyboard using Facilitated Communication.
Hari Srinivasan is a student at UC Berkeley, class of 2022, majoring in psychology. He is a member of Phi Beta Kappa, a student instructor in a class on autism, and a board member of the Autism Self Advocacy Network. Hari learned to communicate using a keyboard.
This story is republished from Misty’s blog.
