Menu

Listen 2 Us - Literacy, Self-Determination, and Interdependence for Nonspeakers

Keynote Address at the United Nations April 2, 2019

(transcript)

Hi, Everyone. My name is David James Savarese, and I’m honored to be here today as an OSF Human Rights Initiative Youth Fellow, an Artful Activist, and one of many alternatively communicating autistics, to talk to you about Assistive Technology and Active Participation.

If asked, we would all agree that communication and freedom are basic human rights, but how we define these concepts can greatly affect who does and does not have access to them.

Each of us has the capacity to make the world a better place. Knowing and believing that is called “self-efficacy.” People say too much time is spent listening to fear. They’re right. Making yourself mad or afraid about something isn’t what makes for change. Hope—not fear--is what drives our self-efficacy.

I leave viewers at the end of my documentary film, with the reminder that “Hope lives on—messy, imperfect.” I say this because hope takes work. We need to nurture it by meaningfully engaging with others about what matters. Each success fosters our belief in ourselves. If I’m hopeful, I’m open to other ideas. I’m making a difference in others’ lives, not just my own. It’s my hope that all people will get the support they need to be able to actively participate, not just as individuals, but as a part of something greater than themselves.

I’m often asked how I’ve managed to thrive and to remain hopeful in a world in which many nonspeaking people are segregated all of their lives. People might say I’m thriving

because of all I’ve accomplished, but I would say I’m thriving because I’m growing and connecting in a lot of different directions simultaneously, and I have been for the past twenty years. I would say I’m thriving because I live life rhizomatically. It’s interdependence we’re striving for here, the right to a rhizomatic way of life in the cultivated garden of a self-reliant, speech-based society.

 

 

But why rhizomes you ask? Well, unlike so-called “true roots,” which have single roots and stems, rhizomes persevere by creating an intricate network of multiple root bulbs full of nutrients and resources that grow both vertically and laterally. If cut down, they grow back. Faced with adverse conditions, they can lie dormant underground for up to a year, rejuvenating themselves before blossoming again. In this sense, weeding them out is far more difficult, if not impossible. With no center or defined boundaries, a rhizome is limited only by its environment, by where it lives. 

 

My life has been a journey of opportunity. And I show some of that journey in my film Deej: Inclusion shouldn’t be a lottery, not to glorify myself, but to show the world what is possible, to disrupt misperceptions about us, and to paint a portrait of active participation and interdependence. It’s my way of giving back for all the chances I’ve been given. I agreed to make the film, not to say I made a film or to best myself in film,

but to free other nonspeaking people to build their own lives as they wish.

 

I used to think freedom was independence, and now I realize freedom is the room

to breathe and to grow. Freedom is about connecting with others. Interdependence is hopeful and involves relating to ourselves as an integral part of something bigger than ourselves. Interdependence makes it possible for us to both get support and meaningfully engage with others. Interdependence follows the heart, not the head,  

and seeks connections, not divisions. Interdependence makes us feel safer in our own skin.

 

When people need us, we’re assessed by them as gold. It’s not easy being assisted by others and needing them in order to do our work, but when our work assists others to learn to read and write or to follow their dreams or to understand what they have been misperceiving all along, then we’re able to work and to fearlessly hope for better lives for our people.

 

Assistive Technology has transformed autistics’ ability to meaningfully and actively participate in the broader world. Not only has it brought us together as a political entity, it has also given a voice to the voiceless. Technology usually makes people think about computers and motorized apparatus. And certainly high tech advances have improved our lives. For example, the Autistic Self Advocacy Network (ASAN) uses the internet to leverage political power efficiently and effectively. Computers and augmentative communication devices have also given alternative communicators a voice that is both easy for everyone to comprehend and efficient and sophisticated enough for us to convey complicated ideas in a timely manner. It allows us to shape the discussions we’re having about our people as well as the world around us.

 

Computers and text-to-speech software give us a voice to be heard by large groups of people. And each exchange is mutually beneficial. No longer isolated and dependent upon others to advocate for us, we are empowered to make a difference and to represent ourselves. That is self efficacy. That is freedom in my estimation.

 

Technology can also offer us alternative paths to literacy and a public presence in classes from the beginning. As early as kindergarten, a single switch Big Mac can be used to say “Here” each morning during attendance. Boardmaker can create the picture icons needed in early elementary school to create sentences, paragraphs, stories, reports and poems. Later, technology can help us become expected & valued participants in class discussions in Physical Science, AP English, or a First Year Seminar at College. Technology can assist us to present on the nervous system and our voluntary and involuntary movements in Anatomy and Physiology class or create and co-direct a theatre performance. It can also help us keynote, present and advocate at conferences, universities, or on national television.

 

But it needn’t always be high tech. When I was little, I used lots of food labels and photos to tell people what I wanted, to understand my choices, and to comprehend where I was going and what we were about to eat. In my case, I needed to be able to touch the words in order to master communication. If I’d been forced to use an iPad early on in my education, the lack of proprioceptive feedback and my motor precision would’ve tripped me up. Instead, using hard copies of the icons and words and velcroed answer banks allowed me to pick up the one I needed and place it in the spot where I wanted it to go. In this way, my teachers were able to see what I knew. A small device called a labeler that prints out words as stickers allowed me to make the transition from answer banks to writing on a computer or assistive device. 

 

The website for my film describes me as someone “who uses a text-to-speech synthesizer to communicate.” Yet, in truth, I, and so many of my peers, use a number of tools: augmentative communication devices, computers with text-to-speech software, our own vocal cords, written language, letterboards, emails, video-chats, g-chats, signs, gestures, objects, body movements, pointing, pictures, borrowing others’ voices (by choice or by circumstance), even poetry and its oil paint animation (in the film).

 

We do not have a word for this kind of flexible communication. People like me are called “nonspeaking”. Sometimes they add an adverb and say “minimally speaking.”

Uninformed people use the term “nonverbal.” How can we be nonverbal when we use language every day?

 

When it comes to disability, we’re stuck in a bi-narial universe of either/or, not and. I want a language of and, a radically interconnected one. What if we thought about communication strategies in this way? And, further, what if we thought about the need to create interdependent opportunities, opportunities that are somehow akin to the lateral network of root bulbs. We need multimodal communication to allow for maximum flexibility and accessibility.

 

If high tech options were my only means of communication, I wouldn’t be where I am today. I use manual sign language to convey my essential commands: things like “I need to use the bathroom,” “Please stop.” “Go.” “I’m done.” “I need a break.” “I need something to eat or to drink or more of something.” I would never use my assistive technology to quickly tell someone I need to use the bathroom, but often people expect nonspeakers to use it first for mundane commands. I think it’s not practical as the place to start.

 

We need communication to build relationships. It’s those connections that make us thrive. It is this multimodal, rhizomatic approach to communicating—one that reaches out and up—that allows us to thrive and avoid isolation in a world that seeks to contain so-called nonspeaking people.

 

For us communication is only communication when it offers a web of support for ourselves and others. We want to grow that web to create a life of interdependence.

We want to both learn and teach. We want to both support and be supported. If we’re interdependent, we have satisfying relationships. We’re neither alone nor are we strictly dependent on others. It’s those relationships—not our ability to produce speech-like sounds—that offer us the safety we need to live.

 

It’s important to remember that being nonspeaking does not mean we’re nonverbal

or unable to read and write. It just means that the complex, motor orchestration needed to utter words from our bodies takes longer to master. In the meantime, we have just as much right as anyone else—and perhaps a more urgent need—to learn to read and write.

 

The Convention on the Rights of Persons with Disabilities calls on every country to offer us the assistive technology needed to actively participate in every aspect of life: political, economic, educational, and social. It acknowledges that assistive technology needn’t be something fancy to work. It’s these kinds of documents that are needed to ensure our human rights are preserved.

 

I challenge us all to leave this room today devoted to a new world. Maybe if we stop thinking of each other as able and disabled, verbal and nonverbal, speaking and nonspeaking, and instead, begin thinking of ourselves as a field of diverse and interconnected beings, life can begin anew for all of us.

 

I give thanks for our intricate and communal web of interdependence, self-efficacy,

and perseverance.

 

May hope live on in all of us--- messily, imperfectly, and rhizomatically.

 

Thank you.