Deaf educator Rachel Zemach calls language “the ultimate gift.” Whether we have the ability to communicate through speech, sign language, typing or writing, having a way to convey our opinions and thoughts — and ask questions — connects us to information, companionship, friendship and community.
But these tools are not always available to Deaf students. In fact, when Zemach became an elementary school teacher in a California public school in 2003 (a position she held until 2013), she discovered that her Deaf special education students had not been taught American Sign Language (ASL). They also lacked the ability to read and write.
She blames this on audism, which she defines in her recently released memoir, The Butterfly Cage, as “a discriminatory attitude toward deafness, created by discriminatory attitudes toward disability, fear of the unfamiliar, and simple ignorance.”
The impact of audism, she explains, is devastating. Likewise, the systemic failure to educate Deaf kids. This, she writes, leads to extremely high dropout rates, social isolation and subsequent unemployment.
Especially maddening, she explains, is that it does not have to be this way.
The Butterfly Cage chronicles Zemach’s experiences as a teacher and is filled with fury and compassion for her students and for other Deaf faculty. What’s more, the book is a bold indictment of school administrators who sideline Deaf students, and her insights — and the humor she used to navigate frequent misunderstandings and foibles — make this a must-read for everyone concerned with disability justice and educational equity.
In addition, the book includes a brief history of the U.S.’s treatment of Deaf people, a history that is centered around debate over the efficacy of sign language in classrooms and at public events. Beginning in the late 1880s, she reports, schoolchildren’s “hands were tied behind their backs if they signed…. Some version of this, albeit milder, is likely occurring to this day.”
It’s horrifying, and while hearing people may find this shocking, this is just one of the indignities Zemach presents. She zeroes in on individualized education program [IEP] meetings for Deaf students where, she says, non-Deaf speech pathologists, counselors and teachers typically focus on mainstreaming the student. The upshot is that far too many kids are left hanging — socially bereft and excluded from understanding the coursework being taught since interpreters are rarely mandated.
The opposite takes place in Deaf-only classrooms where ASL is taught and is the language of instruction. Indeed, Zemach writes that she was staggered by her students’ insights once communication fluency was achieved.
Still, she makes clear that despite flourishing communication in her classroom, schoolwide communication deficits remained significant in her public school. To wit: An intercom system left both her and her students unaware of fire drills, announcements and assemblies, while staff meetings consistently lacked an interpreter. Small wonder that she eventually left the job to write a book.
In this exclusive interview with Truthout, conducted over email, Zemach discusses the experiences which inspired the book and zeroed in on how public schools fail Deaf students, their teachers and families. She also recommends ways for schools to better meet the needs of their Deaf students and faculty members.
Eleanor J. Bader: What drew you to teaching Deaf children?
Rachel Zemach: Ever since I was a preteen babysitter, I loved working with children. Reading about Maria Montessori and her methods made me even more interested. By around age 13, I was on track to teach kids in some capacity.
The fact that you have some hearing, and can use hearing aids, lip read and speak, meant that you were presumed by the schools you attended to understand everything that was taking place. What educational gaps did you experience as a result of not having coursework specifically geared to you as a Deaf person?
I attended many schools from age 10 to 18 and there were many systemic issues regarding being educated in programs designed for hearing students. I went to see the school counselor in one school, for example, and asked him to let me spend half the day in the Deaf program and half in hearing classes, with interpreters.
He said “no,” I must pick one or the other. He also said, “No interpreters.” So, I chose the hearing classes and essentially missed 100 percent of the instruction from then on.
Things are a little better now, as it is more common for interpreters to be used by Deaf/hard of hearing students, but a huge number are still in similar situations today. When we make a request, the normal response by hearing counselors and administrators is still, “No, we don’t provide that.” Sometimes a fight for accommodations ensues. But a teenager or child usually doesn’t know how to fight the system and insist on their legal rights. Many just go without education.
Can you give us a brief trajectory of your personal evolution from a hearing child who became Deaf following an accident to becoming a member of the proud Deaf community?
I became Deaf suddenly at age 10. At 14, I attended a Deaf school, but because I didn’t know ASL, and didn’t know Deaf cultural norms, and because I was a hearing person culturally – I knew how to speak and was able to lip read — I didn’t fit in and the Deaf kids made that clear to me. It was honestly quite painful because I was excited to be there.
I eventually met Deaf friends and became enamored of ASL and Deaf culture, and worked in the Deaf community in different capacities for years. But I’ve always felt like an outsider: physically Deaf but culturally hearing since I am able to able to speak like a hearing person. It wasn’t until I began teaching, at age 40, that I really experienced a shift in my identity. As I saw the Deaf kids I taught, and saw what impacted them — and as I myself experienced tremendous oppression and obstacles by a hearing school administration — I began to embrace a Deaf identity in a deep way. It’s hard to explain, but teaching in a hearing public school was a joyful and profound experience, but it was also brutal.
The Butterfly Cage describes the push by the medical profession to get kids to undergo cochlear implant surgery, inflating claims about the presumed benefits. Are many in the Deaf community organizing to educate families about cochlear implant surgery?
Due to social media, many hearing parents are connecting with the Deaf community and are asking questions. They are getting compassionate, strong, practical advice from Deaf adults on Facebook rather than just getting medical professionals’ biased and often harmful advice. It’s incredible, but it’s an uphill battle and gets demoralizing.
We see the damage the intense push for cochlear implants does; the reason for this damage is that the medical people neglect to see — or advise hearing parents about — the danger of not signing. They are told to use hearing devices instead of signing, rather than being told to do both. This can cause severe and permanent language deprivation. The Deaf community is often powerless to do anything about it, since the whole operation is conducted from hearing professionals to hearing parents, without any access or input from us. As I wrote in the book, between 85 and 90 percent of Deaf children are born to hearing parents. And we, as Deaf people, are typically left out of the conversation. There is a lot of trauma in the Deaf community due to this.
How does the Deaf community fit into the larger disability justice movement?
I am connected to many Deaf disability justice activists, especially on LinkedIn, and the dialogue among them is often inclusive; Deaf people and those with and other disabilities collaborate, relate and support each other in our many battles for equity.
But I have also seen division: Deaf people have such a rich cultural aspect and our “disability” is so centered on communication, that our approach, and our needs, are often different from those with other disabilities. There definitely is some collaboration with [Americans with Disabilities Act] activists, but there is also a lot of Deaf-centered activism that people with other disabilities cannot relate to.
Have you personally engaged with the activist community around disability justice issues?
When I was a teenager, I marched in a protest against a movie that starred a hearing woman playing a Deaf character. That was a powerful experience for me. I also hung out a lot as a teen at the Center for Independent Living in Berkeley, which was a strong hub of disability justice.
About five years ago, when I saw the incredible movie Crip Camp, I was stunned to see many people I knew in my teenage years and early twenties throughout the movie. They and their rebellious, proactive spirits impacted me.
My activism now is mainly through my book. I dedicated my life to this book, to getting the word out about what I saw as a teacher. I also spend a lot of time on Facebook, advising parents and supporting the efforts of other Deaf people.
Your account of a former student’s suicide is gut-wrenching. That Deaf kids experience so much isolation deserves more attention. How can we better highlight the impact of exclusion?
The sad fact is that while hearing people glamorize and enjoy ASL and Deaf culture when it looks positive, they are oblivious, and, in school and medical settings, often aggressively anti-Deaf. They are often well-intentioned, thinking that a Deaf child fitting in, or speaking and lip reading, is best, but the impact for many kids is loneliness and “faking it.” This leads to depression, which is then blamed on Deafness rather than on the environment.
But you asked what is being done about it. Some in the Deaf community are fighting to reverse the wrongs, but many also have a lot of personal trauma around the issues. There’s also exhaustion from how impossible the battles feel, from taking on the multimillion-dollar cochlear implant industry, to being left out of decision-making when it comes to Deaf children, both in daily life and on a legislative level. The contrast between the facts and what the media portray and talk about is stark. Media prefer to focus on the sexiness of ASL and Deaf people rather than the dire situations happening within schools across the country, and we often feel like we’re banging our heads against a wall trying to wake educators and lawmakers up to the deeper issues.
This sense of futility is why I wrote the book.
In special education, putting a child in the least restrictive environment (LRE) has long been considered the gold standard. You make clear that this often doesn’t serve Deaf students. What is being done to get educational providers to understand the downside of one-size-fits-all educational policies?
A group called Lead-K is doing important work in passing legislation in the states to make sure Deaf kindergarteners are on track linguistically. This is important. Almost none of the students I taught were initially able to answer even simple questions, despite being very smart.
And when new legislation pops up that threatens to make things worse; or a Deaf school is threatened with shutdown; or a nonsigning, hearing administrator is hired, the Deaf community goes to bat and fights it. Approximately 85 percent of our Deaf/hard of hearing kids attend hearing schools. In those schools, the people in power are usually hearing. They make decisions based on their assumptions, and it doesn’t seem to occur to them to seek Deaf input. When they get it, from the one or two Deaf staff they may have, they often ignore or squelch their responses because it’s the opposite of what they want to hear. Children are powerless, and their parents are typically scared by the “warnings” of the specialists. It’s a perfect storm for things to remain as they are. Meanwhile, the damage to individual children continues.
You were mistreated as a public school teacher by administrators and peers. How can school personnel better meet the needs of Deaf faculty?
This question makes me emotional. Things were a lot worse than what I put in my book. I left a lot out because it was just too much to dump on busy readers, but I wrestled with denying myself the opportunity to tell the truth.
I’ll say this to those in power and to the staff of any school with any Deaf or hard of hearing child:
Before enrolling the student, insist that the parents commit to learning ASL. This is the only way to ensure full language acquisition and thus, brain development of the child.
Provide them with resources, and with support and make clear that this is a necessity.
Find a Deaf person to teach basic-level ASL to everyone — all staff and students, for communication reasons.
Make it clear to hearing staff that Deaf staff members are their most valuable resource. Respect and make use of their expertise rather than ignoring or being threatened by it. Deaf staff have personal knowledge of being Deaf, and will pick up on issues that others might overlook. If an administrator is respectful, and is genuinely interested in the advice of Deaf staff, staff will follow. The opposite is also true. The local and online Deaf community is an incredible resource for staff, students and families. Use them rather than trying to undermine or avoid them. Do not simply assume a child is doing okay because they look okay. Link them to other Deaf children so they have true peers and peer support, and link them to the Deaf community whenever possible. Also, have a Deaf professional evaluate them to see how they are really doing, linguistically, psychologically, educationally and socially.
Apply the principles of diversity and take into account cultural differences of your Deaf students.
Find the Deaf Children’s Bill of Rights in your state, and post it in all administrative offices. Share it widely with staff and parents. This simple act will have a huge impact. It is only one page long, yet its ideas will contrast sharply with those normally embraced.
Finally, I advise schools to research the principle of Universal Design. It essentially states that when you provide access for an individual, you are actually improving things for all. When you deny a Deaf teacher or a Deaf child an interpreter, or refuse to text an important message announced by intercom, you are causing problems for everyone. When you do the opposite, you provide equal access to all and enhance the setting.