The Voice Goes Off: Writing My Half of Back to Willowbrook

On the first day of my classes at New York University, the voice goes off. I stand at the front of the room and I do not speak, and no one else will speak for the rest of the semester, because the language my students have come to learn does not live in the throat. It lives in the hands and the face and the shaped space between two people, and the fastest way to teach that is to stop pretending otherwise on day one.

That is how my classroom runs, and I have been teaching ASL at NYU since 1991. This month, for the first time, a book of mine runs the same way. Back to Willowbrook: The Slow Winning and Fast Losing of Disability Rights in America is out now, written with my husband and co-author David Boles, and my half of it works the way my classroom works. The country’s speaking voice yields the floor to a Deaf woman’s testimony, and the reader learns the way my students learn: by watching what actually happens when the usual channel shuts off.

One Roll Call

I run the room this way because a room once ran the other way on me, and I put that room in the book.

In the fall when I was five years old, at DeForest Elementary in Council Bluffs, Iowa, a teacher called the roll on the first day of class, and one name got no answer. The name was mine. I did not hear it. I had never heard anything. Five years of family dinners and birthdays in a Hearing house had gone by without anyone discovering that the youngest child was Deaf, and had been Deaf since the delivery room. My teacher, Mavis Thies, said there was something wrong with Janna, and sent me for the hearing test that found me. One roll call did it. The school year had barely started and my life had been discovered.

Then Mavis Thies did the bravest thing any teacher ever did for me. She failed me. She failed me in kindergarten, on purpose, to force my parents to face my Deafness and enroll me at the Iowa School for the Deaf, right there in Council Bluffs, where language finally arrived in a form my eyes could reach. I am fond of saying that my kindergarten teacher saved my life, while the Iowa School for the Deaf saved my mind, and I say it because the sentence needs both halves. I graduated from that school in 1983. Mavis Thies was killed in a car crash three months before David and I finished this book. She read no page of it. Her lesson opens it anyway: sometimes beautiful things are born from failure.

People ask why a history of disability rights needs a kindergarten story in it. The question is backward. The ugly laws, the wards, the work requirements, every system in this book begins the same way my story begins, with an institution deciding what a person is before asking the person. A roll call is a system meeting a child. Mine met a Deaf child and called the silence a defect. The whole book is in that half minute. The rest is scale.

My Second Language and My First Mind

At CUNY Lehman College, where I became one of the first Deaf graduates in 1992, the language requirement did not recognize the language I think in. So I petitioned the dean’s office to have ASL accepted, my second language and my first mind. Second, because the schools got to me before the language did. First, because it is the language my thoughts are made of. The petition worked, and years later I watched universities institutionalize the recognition I had to argue for one office at a time.

I have spent the decades since inside that argument. Teaching ASL at NYU since 1991, six years before I earned my master’s there. Building the ASL Level 5 course in 2014, the first at any major American university. Becoming, in 2023, the first Deaf dual Tutorial instructor at NYU Gallatin, teaching Black Sign Language and Deafness in Performance. I list these plainly, the way our book lists its dates and ordinances, because the book taught me what a list like this is. It is a form of counting, and this whole book is about who gets counted.

The history half of my contribution lives in Chapter 3, where I take the reader through what was done to my language before I was born to inherit the damage: the 1880 congress in Milan that voted signing out of the classrooms of the world, the century of hands folded on desks, and then William Stokoe at Gallaudet publishing the structural analysis that embarrassed a hundred years of assumption by proving ASL a full language. I brought the linguistics to this book. I also brought the receipts.

Writing With David

The night I met David, I was on a stage, in the play whose film would win Marlee Matlin her Academy Award. That fact sits quietly inside Chapter 5 of our book, in the middle of the week in 1988 when Gallaudet’s students shut their university and Matlin sat beside a Deaf student leader on national television. David put our night in that sentence because it belongs there. The history and the marriage have been braided from the start, and this book is the braid made public.

Here is how two people write one book. David keeps the archive. He has kept it for decades, and the book opens inside it, with a comment thread from 2016 where a reader wrote in about her life and David answered with a warning about the ADA that this decade has spent ten years proving correct. His half is the ordinances, the court files, the transcripts, the long documentary patience. My half is the part an archive cannot hold. Two people say “I” in this book, and the book tells you plainly which of us holds the floor at any moment, because we learned long ago that a marriage, like a bilingual classroom, runs on knowing whose turn it is.

I will say the quiet part about trust. Handing your testimony to a co-author is handing someone your name at roll call and believing it will be answered this time. David answered it. Where my chapters run, his editing hand protected my sentences instead of smoothing them, and where his chapters run, my eyes checked every claim about Deaf life against the life. Neither of us could have made this book alone, and neither of us pretends otherwise in it.

From My Hands

My second stretch of testimony sits in Chapter 10, inside the chapter about the eighty-hour Medicaid work requirement, and it begins with the plainest sentence I know how to make: “Here is what this year looks like from my hands.”

It looks like this. “Certification used to be the floor.” An interpreting job once meant a certified interpreter, and now the word qualified is doing less work every month. Event planners write to ask whether my students would like to interpret their events for free, for the experience, and a third-semester ASL student is not qualified to interpret a birthday party, let alone a diagnosis. It looks like supported employment losing money daily, closing the door before anyone’s eighty hours can even be counted. And it looks like one friend of mine, years into a rehabilitation-center bed, counting toward December and terrified of what the new law does when it arrives at a bed like hers.

I am in this book as a witness, and witness is a load-bearing word. A document can tell you an ordinance existed. A witness can tell you what the ordinance weighed. Our book quotes the documents at length, because David insists the record speak in its own words, and my testimony stands beside them so the record includes the people it was practiced on. That is the design of the whole book, and it is the design of a good ASL classroom: the grammar and the body, together, or you have not actually said anything.

We finished the book this summer because it could not wait for a calmer one. The record in it runs to press time, July 11, 2026, and it says honestly which matters were still open when the presses ran. My friend’s December was one of them.

The Floor Is Yours

At the end of my first class each fall, the students file out having spoken no English at all, and something in their faces has changed, because they have just learned that the room worked anyway. Everything they were sure required a voice happened without one. That is the feeling I want a reader to carry out of this book. The country has been told for a hundred and forty-five years that certain people are an obstruction, a cost, a case file, a bed. Our book runs the class where that voice goes off, and the people speak for themselves, in ordinances they fought, in buildings they occupied, in a university they shut down, in testimony from my own hands. The room works. It always worked. The only thing that ever failed was the roll call.

Back to Willowbrook: The Slow Winning and Fast Losing of Disability Rights in America, by Janna Sweenie and David Boles, is available now in paperback and Kindle on Amazon, and as a free PDF download at BolesBooks.com. David’s companion essay, The Dollar Fine, appears at PrairieVoice.com, and the launch episode of the Human Meme podcast is at HumanMeme.com.