Beacon Broadside

Beacon Books at Audible: Mean Little deaf Queer

Susie Bright, in addition to being a best-selling author, activist, and podcast host, is editor at large for Audible. Susie's blog, The Bright List, keeps readers and listeners apprised of new audiobooks.

Today's post is a cross-post Aretha Bright's Bright List review of Mean Little Deaf Queer: A Memoir by Terry Galloway.

Terry grew up in the 1950s. Her mother had been given an experimental antibiotic while pregnant, which had adverse effects on her fetal nervous system. When Terry was nine, she began to lose her hearing.  But being deaf wasn't going to stop Terry from having her big personality! Even though she was named the "child freak" of her town and faced the worst kind of prejudice, she managed to get back at everyone by faking her own drowning at summer camp. Now that takes balls. 

I listened to Terry's coming out, mental breakdowns, all the colorful characters in her life, and kept thinking, "What's next?" She never disappointed. 

Narrated by Elizabeth Hess.

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Books to read in honor of Human Rights Day

A Disability History of the United States

The first book to cover the entirety of disability history, from pre-1492 to the present

Disability is not just the story of someone we love or the story of whom we may become; rather it is undoubtedly the story of our nation. Covering the entirety of US history from pre-1492 to the present,A Disability History of the United States is the first book to place the experiences of people with disabilities at the center of the American narrative. In many ways, it's a familiar telling. In other ways, however, it is a radical repositioning of US history. By doing so, the book casts new light on familiar stories, such as slavery and immigration, while breaking ground about the ties between nativism and oralism in the late nineteenth century and the role of ableism in the development of democracy. 

A Disability History of the United States pulls from primary-source documents and social histories to retell American history through the eyes, words, and impressions of the people who lived it. As historian and disability scholar Nielsen argues, to understand disability history isn't to narrowly focus on a series of individual triumphs but rather to examine mass movements and pivotal daily events through the lens of varied experiences. Throughout the book, Nielsen deftly illustrates how concepts of disability have deeply shaped the American experience-from deciding who was allowed to immigrate to establishing labor laws and justifying slavery and gender discrimination. Included are absorbing-at times horrific-narratives of blinded slaves being thrown overboard and women being involuntarily sterilized, as well as triumphant accounts of disabled miners organizing strikes and disability rights activists picketing Washington. 

Read the introduction at Scribd.

Read a review at Inside Higher Ed.
"By displacing the able-bodied, self-subsisting individual citizen as the basic unit (and implied beneficiary) of the American experience, she compels the reader to reconsider how we understand personal dignity, public life, and the common good."

About the Author

Kim E. Nielsen is professor of history and women’s studies at the University of Wisconsin-Green Bay. She has published multiple books and articles, advised several film documentaries, and won numerous academic and teaching awards, including a National Endowment for the Humanities Research Stipend and a Fulbright Scholar Award to the University of Iceland. Read her posts at Beacon Broadside.

Postcard from Japan: Disability and Disaster

Suzanne Kamata was born and raised in Grand Haven, Michigan, and now lives in Tokushima Prefecture, Japan with her husband and two children. She is fiction editor for the popular e-zine Literary Mama, and edits and publishes the literary magazine Yomimono. Her work has been nominated for the Pushcart Prize five times, and received a special mention in 2006. She is also a two-time winner of the All Nippon Airways/​Wingspan Fiction Contest. She is the editor of Love You to Pieces: Creative Writers on Raising a Child with Special Needs.

Whenever I case a new location, look at friends' vacation photos, or watch travelogues, I wonder about wheelchair accessibility. I wondered the same thing on Friday afternoon, watching disaster coverage on TV with my eleven-year-old daughter in Japan.

An hour earlier, when I went to pick her and her wheelchair up from school – the school for the deaf, which is housed in an aging four-story building with no elevator – her principal rushed out to my car to tell me to hurry home. He told me that a tsunami warning had been issued for Tokushima Prefecture. Although we live around 500 miles from Miyagi Prefecture, the scene of the greatest devastation, the deaf school is right next to an tributary of the Yoshino River, not far from the inland sea, and our home is just on the other side of the levee. It seemed like a good idea to get away from water.

As I listened to the sirens coming from across the road, warning people to leave the riverside, my daughter and I watched footage of people scrambling up hills as their houses, cars, and livelihoods were washed away. I couldn't help thinking about how hard it would be to get a wheelchair up that hill - and later, seeing photos of the aftermath, of how hard it would be to push through that debris.

It's not especially easy to get around with a wheelchair at the best of times. There are many restaurants near our house that we can no longer visit as a family because they are accessible only by steps. At the local McDonald's, the Happy Meal display blocks the wheelchair ramp, and the toilet stall is too narrow for my daughter and her wheelchair. Last summer, she and I went by train to a small town an hour west of here for the funeral of one of her teachers. In order to board a "barrier-free" train car in Tokushima City (pop. 264,764), I had to carry her wheelchair up steps to the platform. There was no ramp. And of course there were no wheelchair ramps in the little towns we traveled through, nor at our final destination. I found out later that I could have called for assistance in advance, but it seemed like a lot of trouble. Why not just pour a little concrete?

After living in Japan for 23 years, I've come to understand that along with the capacity for endurance, much vaunted by the foreign press these past several days, and a sense of fatalism encompassed by the oft-repeated phrase "shikata ga nai" (it can't be helped), the Japanese can be characterized by an aversion to meiwaku (being a burden) In other words, no one wants to make trouble. This, I believe, more than a sense of shame, is why people with disabilities are sometimes reluctant to venture out, and why people don't like to complain.

Last week, I discussed these issues with a nurse that I've been teaching privately for the past couple of years who is writing a dissertation on accessibility. This week, we talked about the earthquake. She told me that she had grown up in Miyagi, where over a thousand bodies were found in the sea, and that her grandmother's house in Fukushima has been irreparably damaged. She told me that as a nurse, training in Chiba, one of the shakier cities in Japan, she learned to wrap patients in a sling made of sheets for easy transport. (It takes too much time to get patients to wheelchairs and gurneys.) She said that she could do this in three minutes flat.

Japan is arguably the most disaster-ready nation on earth. Earthquake drills are held regularly at my children's schools. Outside my daughter's classroom – and every other classroom - there is a backpack with emergency supplies. My kids – and every other kid in Japan – have padded, fireproof hoods near their desks. This past week, my daughter has been practicing for earthquakes every day. Her teacher tells me that although at first she dawdled, she is getting faster at crawling under her desk. But her classroom is on the first floor of an old building that still bears cracks from the Great Hanshin Earthquake in 1995.

I am relieved when I see people in wheelchairs among the evacuees on TV. They made it out alive, in spite of their disabilities. Meanwhile, I am reminded of that great law of nature – sometimes only the fittest survive. One woman who escaped the flood confessed that she couldn't save her elderly parents. In order to live, she had to let them go.

Photo by rachelcreative on Flickr. Used under creative commons.

Mean Little deaf Queer: My New Love Affair With Sound

This week, we've been sharing stories by Terry Galloway, author of Mean Little deaf Queer: A Memoir. Today, she shares her thoughts about experiencing sound since her cochlear implant surgery.

We're giving away five signed copies of Mean Little deaf Queer. To enter, leave a comment on any of this week's posts about Terry Galloway, like any post about the book on our Facebook page, or share a link on Twitter. We'll choose winners at random at the end of the week from entries across our social media empire.

Three months ago I heard my mother's voice for the first time since I was nine. When I first heard her voice I said, "Mom! You have a Texas accent!" All those years of reading her lips and I had never really known that. We both laughed ourselves sick.

When she was six months pregnant with me, she'd been given an antibiotic that saved both our lives, but left me with a chemical imbalance that insidiously ate away at my hearing.

As I wrote in my memoir, "By the time I was nine the voices of everyone I loved had all but disappeared." 

That was my life for 51 years. Then, last May, I was given a cochlear implant. I'd resisted it like crazy. I was used to my hearing aids and couldn't believe the operation (which is, after all, a brain surgery) could offer anything better than I already had. I'd worked hard to understand as much as I could and to be myself in the world. But one day, after attending a meeting with my Vocational Rehab counselor and me, my lover and sweetheart Donna Marie said to me, “Why should you have to work so hard?"

Watch Terry Galloway on YouTube discussing why she decided to get cochlear implant surgery

So there was that. And the fact that my counselor had almost exactly the same type of hearing loss I did (profound) and she had two implants. Her audiologist, who is my audiologist, told me that to watch her after she had had the implant was like seeing someone put points on their IQ. 

So I had the operation. They implanted receivers in my brain, tucked a magnet under my scalp. It took me a month to heal. And then they brought out the gem-- the cochlear computer itself. When I first began thinking of the cochlear I had imagined the machine to be the size of half my head-- a huge, robotic, unabsorbed twin.

The real deal looked sweet in its little box. It slipped easily behind my ear. And the coil that ran from the computer to the magnet inside my head was no bigger than the thumb of an alderman.

When they first turned it on, I was in a soundproof room alone with Katherine Gray the audiologist, an intern, Donna, and Diane Wilkins, who was taping it for a documentary about the process we're doing called Rewired. 

They turned it on and that soundproof room turned on in my head like a space shuttle-- filled with sounds that everyone else in the room had long learned to ignore. It tore my head off.

That's why Katherine had insisted on holding my hand. The rush of sound is like the rush of blood and makes you sick with the excess.

I was terrified that I wouldn't be able to adapt. And then Katherine let go of my hand and took out a small child's bell and rang it. 

And that tiny little bell sounded in my brain so sweetly, so clearly, my whole soul turned to it. 

That was the beginning of my new love affair with sound. The world is exactly what I thought it would be -- a miraculous, buzzing confusion. And my brain is already beginning to categorize the different meanings of different sounds. So, yes, there are birds -- which I kind of believed in because I had seen the fluttering through the skies but never really believed that they made the cacophony that everyone claimed. But then I heard them clanking and clattering. And they were all one until again my brain became to sort through them and tell me, well, this is one kind of bird and it makes a sweet trill; and this other yaks like a gossip. And this one over there -- and, god, I actually could locate it by its singing-- and the song sounded (or so I imagined) first like yearning and then changed. Of course in my state of mind I defined that change of tone as happiness.

Photo of Terry Galloway enjoying piano taken for the documentary Rewired.

Mean Little deaf Queer: Little-d Deaf (excerpt)

This week, we've been sharing stories by Terry Galloway, author of Mean Little deaf Queer: A Memoir. Today, we're posting an excerpt from that book, in which she explains the difference between Big-D and Little-d deaf.

We're giving away five signed copies of Mean Little deaf Queer. To enter, leave a comment on today's post, like any post about the book on our Facebook page, or share a link on Twitter. We'll choose winners at random at the end of the week from entries across our social media empire.

I recently read that hearing is the last of the senses to go. I’ve taken this to mean I’m going to be buried alive, because, deaf as I am, I won’t know I’m not already dead. This alarming new bit of information moved me to take up the nonhearing exercises I used to indulge in when I was younger. I put my hearing aids aside, stretch out on the bed, and get myself ready for what’s in store. The mattress trembles with every passing car and so do I. When a train rumbles and chugs along the tracks three blocks to the north, my body rumbles and chugs right along with it. Thunder shakes the walls of the little house where I live and the shocks of it make the headboard and my own heart thwack. Lying there awake too long breeds in me a deep unease, a fear that I ought to be feeling something I’m not. My longtime love, Donna Marie, calling for help in the back room; our cat, Tweety, yowling piteously to be let in. Those are the times when going deaf the way I have, in fits and starts, seems most akin to dying. I’m losing, will lose, have lost. And each step of the way, my body seems to have been trying to tell me something new, something it seems I ought to have known all along.

In 1961, the year after I was diagnosed, my body reached a tipping point and I began to lose my hearing in big old chunks. It was a loss as erratic and unsettling as a Ukrainian train schedule. I’d lose a decibel or two of sound, then my hearing would stabilize. A day, a week, a month later, whole conversations would fade into gibber- ish. Familiar noises like the purr of the refrigerator would simply vanish and I’d have to adjust all over again. One late afternoon I fell into a doze on the couch listening to my parents’ muttered lazy Sunday conversation, then woke a handful of minutes later to what seemed like nothing. For two days even my own voice was an echo in my head.

I loved the crispness of my own speech, a trait both Trudy and I picked up from our German maids. When we first moved from Germany to Texas my precise enunciation marked me as somehow superior to those who drawled or squeezed words through their noses. After my deafness took hold, my speech began changing, every vowel out of my mouth taking on a soft slur that people took for south- ern. I didn’t love the South then, the way I love it now. And that change to my voice embarrassed me, but not as much as it did to see the new incongruities of my voice reflected in people’s faces, the wince when I was talking too loudly, the grimace when I wasn’t talking loudly enough, or the skeptical twist of brow when I’d swear I didn’t mean my tone to be angry, that I had no idea I sounded sardonic when I’d meant to sound sincere. I could feel all the lilt and color draining from my voice, feel it becoming a monoto- nous drone. I’d forget to give the end of a sentence a vocal twist to make it mean this one thing, or drop the sound in the middle to make it mean another. I found it hard to remember how words I knew sounded, harder still to learn new words I couldn’t quite hear. My two sisters loved playing teacher, and made exaggerated facial displays, showing me how my lips should move to form the new syllables. But even with my new hearing aids it was hard to piece the muted gabble of sounds together into any kind of sense.

Hearing aids or no, I was constantly being taken unawares, and that made me jumpy, almost paranoid. I didn’t realize someone was running around the corner until the body was upon me, didn’t answer the voice calling from the bathroom until they’d got up off the toilet to scream, didn’t know anyone was pounding at a locked door unless I accidentally opened it and they came tumbling through. I was a private child, made even more private by the con- fusion and intensity of my sexual desires, and everyone seemed to be sneaking up on me. I needed a big hunk of uninterrupted solitude to play out my needs to their natu- ral conclusions, and it divided my focus having to keep one eye on my closed bedroom door and the other on my Barbie and Midge dolls having sex.

At the same time, I was discovering, to my repeated embarrassment, the Freudian element in lip reading. One memorable afternoon as I was inching forward in the lunch line, I looked up at the lips of the fourth-grade sex bomb who had just cut in front of me, and was wonderfully taken aback when she deigned to address me: “Hey kid, you’ve just made my day!” My heart started thumping like a happy Disney bunny until her flat inflection, her narrowed eyes, and the pinchy look around her nose clued me in to what she’d really just said, which was, “Hey pig, get out of my way.” Who knew deafness could be so ironic?

All my mother and father knew of deafness was what they’d seen in a film called Johnny Belinda, about the rape of a tragically clueless deaf and mute girl doomed, like me, always to be taken by unwelcome surprise. All they knew about the deaf was that they signed. My parents didn’t know what to think of Sign. They knew it to be a real lan- guage, but it was an alien one, something neither one of them—even my father, with his spy’s proficiency in Ger- man and Russian—could ever imagine learning. When the Texas school system offered them the choice of leav- ing me in public school or enrolling me in a school for the deaf, they had no idea how to choose, and left it up to me. I’d seen only one person sign before, and the symbols her hands carved out of air seemed akin to the soundless lan- guage of the TV Apaches I so admired. I was already using my hands anyway—to gesture, touch, and feel. Sound was quickly seeping away from me, leaving me in a void I was anxious to fill. I would have welcomed that new way to understand. But for my mother’s sake I wanted to appear whole again. I already knew how to do that—act cool and pretend all was well. Over pancakes one Sunday morning, my parents asked me if I wanted to transfer to a special school where they’d teach me to sign. I didn’t even bother to think about it, just downed my cocoa and rolled my eyes as if they’d told the biggest joke in the world. “Sign? Hah. Not for me, thank you. And pass the syrup, please.”

At public school in Fort Hood, I sat up front and did the best I could to learn, and each afternoon served out a two- hour sentence in the gulag known as special ed. Special ed was usually held in a one-room annex that looked like a trailer on stilts. There was a steep ramp with handrails running from the ground to the door. The room was dark and close and stuffy, just big enough to hold the handful of us special kids. There was usually someone in a wheel- chair, someone blind, someone dull and thuggish, and at one point a sister and brother who seemed old to be in elementary school—they both had a shadow of a beard and a look about their eyes that reminded me of dogs turned mean after being poked at, beaten, and teased. I realize now they were probably mildly retarded, because when- ever they talked, which was seldom, their faces would con- tort in rubbery exaggeration, as if they had to fight their own muscles to get the words out right. We did nothing productive those two hours we were together. Zero. Zilch. We sat, fidgeted, or stretched out and whiled away the hours. Since I was able-bodied I helped empty the pee bags and sometimes I’d read aloud while the volunteer assis- tant, whose Texas twang thrummed like an overtightened string, would correct my pronunciation, teaching me to say “fir” instead of “for” and “enny” instead of “any.”

I was a clever little schemer and a voracious reader, so I managed to keep up in my regular classes at school, getting hard-won B’s and A’s even though the teachers had a bad habit of turning their backs as they were speaking to write on the blackboard. I’d read their lips as they said, “We call the theory that there is only one . . .” then they’d turn their backs and the rest would be lost in puffs of chalk. It didn’t occur to me to ask my teachers to change their behavior, to look at me when they were talking, to slow down so I could read their lips. I was a child and thought I had no agency. But I knew I was flying by the seat of my pants, that every answer I gave was guesswork, that I couldn’t really spell or diagram a sentence; and at age ten, then eleven, then twelve, I was still using my fingers to add and subtract. It wasn’t until years later that I found out I’d been one of the lucky ones.

As a child I didn’t pay much heed to other deaf chil- dren, because I didn’t know any. The deaf as a people don’t regard themselves as disabled but simply a culture entire, like the Amish. And, like the Amish, they keep to themselves. There is a definite hierarchy in that deaf cul- ture. If you are deaf of deaf—a deaf person born to deaf parents—and your language is Sign and the company you keep is primarily deaf, you are Deaf with a capital D. If you are hearing-born to deaf and you sign and live and play primarily within the deaf community, your blood is still pure. It dilutes a bit with every variation from those first golden means, but lowest on the deaf totem pole are the waverers like me who came to deafness gradually or late and were “mainstreamed” to be part of the hearing world. As a general rule we suck at Sign. My own Sign is on par with my Spanish, which can get me to the bathroom, but after that, nada. We are known as the little-d deaf.

Growing up, I knew none of this. I was twenty-five before I went to my first deaf gathering, and I was taken aback to encounter hostility and suspicion there. When I introduced myself as Deaf, overenunciating and gesturing broadly with my hands, one of the women signed to me furiously, her eyes getting harder by the second as she re- alized how little I understood. I wasn’t Deaf but deaf, and when she signed the lower-case d I could almost smell its rotten tang. I’d gone there thinking I’d be embraced like a prodigal daughter and instead found myself under fire for, so I thought—the same curse that had befallen me at the Lions Camp for Crippled Children—not being disabled enough. Hostility makes me hostile in return. It was all I could do not to stick out my tongue and grimace and pos- ture like a Maori warrior. I walked out of there thinking they were a closed, provincial bunch and I was better off outside their preachy little circle. I remained smug in my lowercase superiority until a few years later when I devel- oped a crush on a deaf woman who was a consultant for the PBS television series for disabled children I was cowriting. She spoke as well as signed and it was she who told me these stories.

Once upon a time in certain institutions for the deaf, Sign was out of fashion and something called total communication was in. Total communication simply meant that deaf children would be taught any and all ways to communicate, and that meant lip reading as well as Sign. In some places the message got skewed and in those places the fashion of the day became for deaf children, all deaf children, to learn to lip-read and speak. Sign was frowned upon if not strictly forbidden. As an expert lip-reader I can tell you, lip-reading is a true talent and hard as hell to learn. Most people never can.

The children who couldn’t learn to lip-read tried to please their teachers by moving their lips while mimicking what they thought were the right sounds. But the sounds they made were random, based on raw physicality, the feel of air moving through the throat and head. Hearing par- ents didn’t like their children vocalizing this way, because it was too close, they complained to the teachers, to the grunting of animals. If the sounds the children were mak- ing weren’t the “perfect” ones, their teachers would tape the children’s mouths as punishment. The children were trying their hardest to please, to communicate, so they’d gesture as they tried to form the shapes of the words in their minds, shapes for which they had no sounds. That struck their teachers and their parents again as looking too animal, too vulgar, too much like Sign, so to teach them better, the teachers would tie the children’s hands to their chairs. “Read the lips,” they were told over and over again, but those children couldn’t do more than guess what they were being asked to read. It was next to impossible for them to find the essence of elusive sounds in the swift mo- tion of the mouth. Many of them grew up without language—a whole generation who couldn’t speak, couldn’t sign, and could barely read or write.

She had other stories to tell me too, of unbearable disregard. A child was born to hearing parents, both doctors, full of high expectation for their children, but this infant girl wasn’t thriving like her two brothers. She seemed indifferent to language, slow to respond to the simplest commands. They were ambitious, busy people who had no time to waste on a child who was, for whatever reason, less than perfect. They diagnosed her themselves as being mentally retarded and had her committed as a toddler to a state institution. Years later a new attendant who was fond of the child noticed her collecting gum from under the tables and chairs. As he watched her fashion intricate and fantastical figures from the raw material, it began to dawn on him that a mistake had been made. He stood behind her and clapped his hands. She didn’t respond. That was all it took to find out she was simply deaf.

Years later I met that girl. By then she had become an artist, living on her own. She wore two hearing aids like mine and also had pulled off a miracle—she not only signed, she lip-read. She vocalized too. But when we talked, I remember thinking how interesting it was that her facial expressions were identical to those of the brother and sister I knew from special ed. I never shared my observation with her. I didn’t want her to be disturbed about something she couldn’t change. Besides, she probably already knew the oddities of her own speech, the same way I know that when I talk—despite all my pains—the words out of my mouth are cottony, blurry around the edges, as if they’re in danger of being swallowed back down my throat. Exactly the way a little-d deaf like me would speak.

Video: Terry Galloway on why she decided to get cochlear implants

Photo by Alan Pogue.

Mean Little deaf Queer: What Changes When You Can Hear Again?

This week, we're giving away five signed copies of Mean Little deaf Queer, Terry Galloway's memoir that Kirkus called "frank" and "bitingly humorous." To enter, leave a comment on today's post, or share this post on Facebook or Twitter. We'll choose winners at random at the end of the week from entries across our social media empire.

To give you an idea of Terry's warmth and humor, we made some videos with her prior to her cochlear implant surgery a few months ago. In yesterday's installment, she spoke at length about her deafness and why she decided to get the surgery. In today's video, she discusses how she thought the surgery will make her different and how she'll stay the same.

Terry Galloway on how cochlear implants may or may not change her

Transcript: Terry Galloway, author of Mean Little deaf Queer, talks about her upcoming cochlear implant surgery.

So they turn it on, and then they start to teach your brain how to hear again. And in my case, because I had sound, and I lost my hearing gradually, my brain’s going to remember.

So once upon a time I might have heard birds signing. Once upon a time I heard the insects doing whatever the insects do, I don’t know what they do, I’m hoping it’s a symphony! Once upon a time… and so my brain remembers.

But that part of it hasn’t been stimulated… in years. And all of a sudden it’s going to be going hmmmmmmmm.

Just like with the little digitals. When I first got these, it was like, “Oh my god what is that ungodly sound?” And it was a train. And I hadn’t even realized that there was a bridge with a train--the years that I’d been living in the neighborhood--- that there was a bridge with a train, that the train went over every single day. I didn’t even realize it until that moment.

But then at night, you take it off. Or when you get sick of it and you can’t take it any more, you take it off. And you’re deaf again. And there is a kind of bliss in the silence. It’s so profound. And you genuinely can be lost in… it’s not just self-contemplation, but it’s the contemplation of silence.

And so I don’t have to miss that. I’m going to keep that.

What do you think will remain unchanged about you after the surgery?

I don’t know. One would assume, and I assume, that I have a core of behavior that has been untouched by both the loss and will be untouched by the restoration of hearing. I would assume that, but, God, I don’t know. What if all of a sudden, I get my hearing back and I turn into a complete and utter shit? And I have been in my life a complete and utter shit, so it’s very easy to contemplate. I remember, as a kid, a real strain of selfishness. And a real strain of… something mean. And I kind of hope I’ve had that wrung out of me. I kind of hope that-- and I’m not talking about self-pity that does it—but I kind of hope that because of all of this, and because of the way I’ve had to go at my own ambitions aslant, that I became, or have become, kind. I hope I’ve become kinder.

Maggie Kast: The "R" Word, Slang, and Sensitivity

Today's post is from Maggie Kast, whose story "Joyful Noise," appears in the anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs, edited by Suzanne Kamata. Kast is also the author of and The Crack between the Worlds: a Dancer's Memoir of Loss, Faith and Family (Wipf and Stock, 2009). Her essay, "No Pity," appears in the anthology Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum, edited by Kyra Anderson and Vicki Forman (Woodbine House, 2010).

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Qty:

Rahm Emanuel's recent use of the "r" word to castigate conservative Democrats has created a flurry of comment about the word, both as slang for incompetent and as derogatory term for people with developmental disabilities. Sarah Palin demanded he be fired, and Rush Limbaugh called Rahm's meeting with advocates for the mentally handicapped a "retard summit at the White House." Questioned about Rush's rant, Palin called his use of the word, "crude and demeaning," although she later excused it as "satire."

This current publicity merely highlights a longstanding problem and efforts to solve it. In March, 2009, the Special Olympics held a youth summit, and this group of young people conceived and launched a campaign to "Spread the Word to End the Word," designed to eliminate "retard" both as epithet and descriptor. Several governors have endorsed this campaign and forty-eight states have replaced "mental retardation" with "developmental disability" or a related term in their laws and departmental designations. A bill known as "Rosa's law," currently before Congress, would change the term "mentally retarded" to "intellectual disability" in several federal statutes.

As the parent of a child who failed to sit up, walk or talk when expected, I faced the question of what to call his condition. Never fond of euphemisms, I still dreaded the harsh sound and still harsher meaning of the "r" word and yearned to call my son anything else. At the same time, I wanted to say the word before it was said to me. More than anything, I hoped my son would never hear it, would never know this cruel fact about himself. One night in the '70s, as I listened to reports of Nixon's wrongdoing on the radio, my son propped on his hands on the kitchen floor, and repeated to myself: "retarded, retarded," coming down lightly on the "r's" and the "e" and clipping the "t" and the "d's," trying to improve the sound of the word and get myself used to it. Accepting the term was part of my facing difficult facts, and my regret was matched by

Kim E. Nielsen: Annie and Helen, BFFs

This past weekend marked the birthday of Helen Keller, and Kim E. Nielsen, author of Beyond the Miracle Worker: The Remarkable Life of Anne Sullivan Macy and Her Extraordinary Friendship with Helen Keller, reflects here on an enduring relationship that began when Keller was a young girl and spanned fifty years.

The friendship of Anne Sullivan Macy and Helen Keller was not very glamorous. It lacked the men and clothing of the “Sex and the City” women. It lacked the dramatic guns and suicidal road trips of Thelma and Louise. It wasn't a fifty year slumber party of everlasting conversations, hugs, and secrets, and included no backstabbing cattiness and sexualized mud-fights. Somehow, however, the two women, remained friends— genuine friends— for nearly fifty years.

Having first written extensively on Helen Keller and now on Anne Sullivan Macy, I sometimes feel that I've lived two sides of the same story. After meeting in 1887, fourteen years apart in age, the two women quickly became the central persons in each other's lives. They became, slowly and eventually, dear friends.

Like all long-term friendships, perhaps, it was a confusing mess of a friendship. Their intense and multifaceted relationship contributed to the deterioration of the Macys' marriage— John Macy was not only Anne's husband but also Keller's editor and political mentor, and all three lived together in a house that was more Keller's than anyone else's. Even public perception of Keller and Macy was contradictory, haunted by the question of which woman enabled and created the other. Many credited the teacher with crafting her student's personhood; but as Keller grew to adulthood, others dismissed Macy as a low-status assistant.

To add to the mess, the two had all the foibles of human beings. Keller protectively held long and fierce grudges towards those who even hinted at criticizing Macy, and rarely (even long after Macy's death) said anything negative about her. Yet she could be a passive-aggressive snot, and after John and Anne Macy's separation wrote frequently about John's good looks, intelligence, and all around wonderfulness. Macy could be great fun, but her dourness, when it arrived, was intense and hard for Keller to understand. Macy admired but begrudged Keller her optimism. She also envied Keller's religious faith, but wanted nothing to do with it.

Most importantly, and what made the friendship work, was that they trusted one another. While the whole world assumed that Keller's deaf-blindness forced her to depend on Macy, my research suggests that the reverse more accurately characterizes their relationship of nearly fifty years. Macy leaned on Keller, juggling her uneasy combination of emotional vulnerability and a fierce desire for independence. Her lifelong struggle with chronic illness and depression was far more debilitating than Keller's deaf-blindness. Keller provided love, acceptance, daily assistance, an income, and a home. Their deep friendship, and Macy's willingness to allow herself to be dependent on Keller, gave meaning to Macy's life. Keller felt immense friendship, gratitude, and love for Macy, but she did not need her friend in the same way that Macy needed her.

Near the end of Macy's life Keller served as her personal aide. At one point in the 1930s any letters Macy sent had been fingerspelled (she called it dictating) to Keller who then typed them. In several of the letters Keller inserted comments in parentheses, disagreeing with or editorializing about Macy's words. My favorite example of this includes sniping between the two. In a slightly joking manner Macy complained about Keller's cheerfulness and health. While the food, drink, and heat had made the older woman ill, the younger woman had insides “made of cast iron fastened down with hoops of steel” that left her unaffected. Keller inserted her own parenthetical remarks, this time indicating that it was Macy's own *&%^ fault that she got sick because she drank too much water. Bicker, bicker, bicker!

The bickering, however, was part of the friendship; it was part of the trust. When Susan B. Anthony turned seventy, her dear friend Elizabeth Cady Stanton wrote, “If there is one part of my life that gives me more intense satisfaction than another, it is my friendship of more than forty years standing with Susan B. Anthony... Emerson says, ‘It is better to be a thorn in the side of your friend than his echo.’ If this adds weight and stability to friendship, then ours will endure forever, for we have indeed been thorns in the side of each other… I have had no peace for forty years, since the day we started together…” (Woman's Tribune, February 22, 1890).

Anne Macy and Helen Keller would have agreed. Disagreement and debate added energy to their friendship, as well as the weight and stability referred to by Stanton. For almost fifty years they lived out their friendship and their trust— as they shared a love of the intellectual life, adventured, bickered, and cared for one another. May all of us be so lucky.

Kim E. Nielsen: Why Write About Anne Sullivan Macy?

Today is the birthday of Anne Sullivan Macy, best known as the teacher of Helen Keller. She is the subject of Beyond the Miracle Worker: The Remarkable Life of Anne Sullivan Macy and Her Extraordinary Friendship with Helen Keller, by Kim E. Nielsen, who wrote today's post.

I was so sick of Helen Keller. She'd begun to annoy me tremendously. After two previous books on the famous deaf-blind woman I swore I would never again write anything even remotely related to her. I’d had enough. I started a project far removed and told everyone in my professional circle about that far-removed project in order to commit myself to it.

Then I reread Anne Sullivan Macy's 1916 letters to Helen Keller. Macy had written them to her former student and then dear friend as she dealt with the illness that she thought would kill her. The letters reveal an introspective woman trying to understand her life. Vacillating between urgency and detachment, she reflected on pleasure, anger, complacency, and amazement. It struck me that her life embodied both contradictions and intensity: physical pain, emotional pain, isolation, friendship, joy, intellect, tenacity, success, and near constant self-doubt. Yet, as she thought about death, as she pondered her life, she took immense joy in the daily life of the Puerto Rican countryside where she was staying.

Though born in 1866, Macy's life dilemmas are surprisingly modern. How does a smart, passionate, introspective woman find love, intellectual satisfaction, economic stability, and friendship? How do any of us do so? She called herself a "badly constructed human being" who "blunder[ed] into life through the back door." As far as I can tell, that is how most of us do it.

As I reconsidered Macy, I became convinced that I, and nearly everyone else, had shortchanged the woman known only as the teacher of Helen Keller. I needed to do better-- to do justice to her and to provide a peephole into Keller and Macy's multifaceted, and often surprising, friendship. Our cultural memory mythologizes and simplifies Macy as a straightforward educational superhero. She deserves more.

A Mother’s Perspective on Palin, Disability Issues, and Reproductive Rights

Today's post is from Penny Wolfson, whose National Magazine Award-winning essay "Moonrise" appears in Love You to Pieces: Creative Writers on Raising a Child with Special Needs. The essay was the basis for Wolfson's memoir, Moonrise: One Family, Genetic Identity, and Muscular Dystrophy. Wolfson is a faculty member in the creative writing program at Sarah Lawrence College.

My son Ansel always hated the notion, growing up, that he should hang around with other "disabled' kids. If I tried to hook him up with the other physically challenged boy in his school, or wanted to send him to muscular dystrophy camp, he resisted.  "Mom," he'd complain," Just because I use a wheelchair doesn't mean I have anything in common with other people in wheelchairs."  He thought that, even though muscular dystrophy was a genetic illness he had, it was only a very small part of who he was. And I had to rather reluctantly agree.

I'm reminded of that now in the weeks since the Palin nomination--weeks when apparently even so-called liberal women with "special" children have to remind themselves of their political affiliation because of what I see as their weird identification with Ms. Palin, and Trig, her now-famous Down's syndrome son, displayed like a new brooch at the Republican convention and the Vice Presidential debate. 

Well, even though I do have a couple of things in common with Ms. Palin—I am a working woman; I do have a disabled  child—I cannot for a moment ally myself or identify with her; in fact I abhor everything she stands for. She does not represent my interests, she will, I believe make it harder and more costly than ever to care for a child with a disability, and she would like to forbid other couples from making their own complex personal choices about having a child with special needs.