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Things to talk about next week
They’ve been reading the book, “Deaf Like Me” and have watched 2 cochlear implant movies (Sound and Fury, Sound and Fury: 6 Years Later). ….so we have had a lot of discussion around this topic. Please feel free to share your experiences, especially your perspective as a parent of a child with a cochlear implant. I think it’s important to emphasize that you and DH found out [your son] was deaf at the age of 3 and maybe talk about what things were like up until then, compared to now. You also might want to touch on why you wanted DB to learn sign language. Why the implant? You can talk about DB’s progress having both sign language and the implant, and how this has benefited or not benefited him.
1. what is it like being the parent of a child with a CI
From my reading, it is clear that we are in the middle of a revolution in Deaf culture. And, I know that what I’m doing is the right thing, although only time will tell if we are on the winning side.
Needs to have the tools to interact with our large, loving, hearing family and be able to connect to his d/Deaf community.
Hard to not know the language. Foundations of language. more here?
2. when we found out
Our DB was already 3, and it took 3 audiologists and 5 visits to 2 different programs to determine that he was really profoundly deaf. One mom told me that they didn’t realize how deaf their daughter was until they turned all the lights out in the testing booth. At 2, she had been playing them for fools for months.
3. life before and after
We had a summer of screaming that nearly broke us.
Still hard to interact with peers. Kids in his classroom at 3 aren’t friendly with him anymore. They were all buddies at the beginning of day care. The others have moved on and only sometimes interact with him. Hard on playgrounds when he’s trying to communicate and the kids won’t look at him. Even the kids of out closer friends don’t look at him. His own sister will willfully ignore him.
Still doesn’t have a close friend his own age. No one his own age who signs with him. Connects more easily to adults/older people (college students).
4. why ASL?
All of the parents who are raising their deaf kids with implants and no signing are denying their kids an important part of their history, their culture, their heritage and their ability to connect to Deaf people around the world. They are also condemning them to depend entirely on technology for understanding and interacting in the world. I think (and I hope) that many of these families have a rebellion on their hands when their kids get older. I hope that many of these kids find signing later in life and embrace it and treasure it. Because it is part of who they are.
Some parents who insist on English only seem to be doing so out of fear, ignorance and in some cases laziness. I apologize to all of you who feel incapable of learning sign because you’re too busy, too broke or too beaten up by the educational system to embrace learning another language. Still, your Deaf kids are still Deaf, even if they have bilateral implants from an early age.
Oral/manual education has always been a class distinction, now more pronounced. Cost of therapy, getting to therapy, time off from work, etc. First world/3rd world also more of a divide. What is going to happen with that?
5. how are things going?
We think they are going really well. But, we have some impossible choices to make in the near future. A supportive classroom/system or Deaf/deaf/HoH peers? English or ASL for instruction?
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Books
from the UO Community Conversation: The Deaf Community
The resources listed here aren’t exhaustive, but cover many of the important issues in the d/Deaf community.
Books: (in alphabetical order by Author’s last name)
Chorost, Michael. Rebuilt: My Journey Back to the Hearing World. 2006. [Available from Summit]
From Publishers Weekly:
Chorost had been severely hearing impaired since birth when, one morning in 2001, his remaining hearing suddenly and inexplicably shut down. Fortunately for Chorost, cochlear implants have progressed to the point where people formerly isolated from everyday sounds can hear leaves rustle as they walk through them. A tiny device, the technological equivalent of a 286 computer, was surgically implanted behind the author’s left ear. …. As Chorost makes clear, his hearing wasn’t restored; it was replaced. His body is now part “machine.” The implant was only the first step of the author’s learning to hear again, as his brain struggled to interpret the new electrical signals it was receiving.…He recounts with candor and humor his struggles with relationships, both casual and intimate. Readers will find much food for thought on the implications of medical technology and what constitutes our humanity in this beautifully written debut.
Cohen, Leah Hager. Train Go Sorry: Inside a Deaf World. 2001. [Available from Summit]
From Publishers Weekly:
Combining memoir and reportage, Cohen provides a sensitive, intimate portrait of a New York City school for the deaf and the issues facing the deaf community. Cohen is not deaf, but her father heads the Lexington School, and she grew up there. She tracks the progress of two students: Sofia, a Russian immigrant bravely learning a second sign language and a new American world; and ghetto-raised James, who finds stability after moving into the school dormitory. Cohen analyzes the fierce debates over mainstreaming the deaf, the value of oralism and whether new cochlear implants rob the deaf of their culture.….She portrays sign language with wonderfully tactile prose–the word “silence,” for example, is signed with “austere arcs.” If Cohen’s narrative is disjointed, her commitment and her descriptive gifts make her book memorable.
Lane, Harlan. When the Mind Hears: A History of the Deaf. 1999. [KNIGHT LIBRARY Call number: HV2530.L36 1984]
from No Sign of Education, J. V.Van Cleve. History of Education Q., (1985), p. 499-506.
…The history of deaf education, indeed the whole field of deaf history, has been almost untouched by historians in modern times. There is no comprehensive secondary literature, no accepted paradigms, almost no recognition by historians that this is a legitimate subject for study. A few broad studies have appeared in the last ten years, and all are useful introductions to the subject, but only introduction. Lane’s books provide a paradigm, raise important issues, and show a refreshing breadth of research, albeit mainly in printed, nonarchival, sources….Lane makes no pretense of neutrality as he traces this back and forth struggle between the oralists, whom he argues eventually won a complete victory, and the signers. Lane is on the side of Clerc and most deaf people who believe, and have believed, that the foundation of education for deaf children should be sign language….
Oliva, Gina A. Alone in the Mainstream: A Deaf Woman Remembers Public School. 2004. Gallaudet University Press
From Amazon.com Editorial Reviews:
In writing this important book, Oliva combined her personal experiences with responses from the Solitary Mainstream Project, a survey that she conducted of deaf and hard of hearing adults who attended public school. Oliva matched her findings with current research on deaf students in public schools and confirmed that hearing teachers are ill-prepared to teach deaf pupils, they don’t know much about hearing loss, and they frequently underestimate deaf children. The collected memories in Alone in the Mainstream add emotional weight to the conviction that students need to be able to communicate freely, and they also need peers to know they are not alone.
Padden, Carol and Tom Humphries.
Deaf in America: Voices from a Culture. 1990. [Available from Summit]
Amazon.com Editorial Reviews:
Washington Post : To be deaf, it seems obvious, must be to live in a world of silence. That, say the authors of Deaf in America, is where most people get it wrong…[Padden and Humphries] challenge their readers to imagine a world, one with a “different center”–one in which ability or inability to hear is not at the core. The thing that links it all together is sign language, which Deaf in America contemplates, illustrates, and celebrates. –Paul Berg
Inside Deaf Culture. 2006. [KNIGHT LIBRARY Call number: HV2545 .P35 2005]
Amazon.com Editorial Reviews:
New England Journal of Medicine : This well-organized and clearly written book provides a fascinating inside look at the development of Deaf culture…Padden and Humphries’s presentation of these marvelous insights into the history and development of the language and beliefs of the Deaf should be viewed as a welcome step in the quest to inform the hearing world of the rich and fertile culture of the authors’ beloved community. –Susan Waltzman
Sacks, Oliver. Seeing Voices. 1989. [KNIGHT LIBRARY Call number: HV2370 .S23 1989]
from Library Journal:
…In this work, Sacks explores all facets of the deaf world–he meets with deaf people and their families and visits schools for the deaf, spending a good deal of time at Gallaudet University. As he writes, “I had now to see them in a new, ‘ethnic light,’ as people with a distinctive language, sensibility, and culture of their own.” The work is divided into three broad sections, throughout which there are numerous, somewhat distracting footnote “excursions.” …[T]here is a wealth of insight and information here…. – Debra Berlanstein
Spradley, Thomas and James Spradley. Deaf Like Me. 1985. [KNIGHT LIBRARY has 1978 edition. Call number: HV2380 .S67]
from Gallaudet University Press:
Deaf Like Me is the moving account of parents coming to terms with their baby girl’s profound deafness. The love, hope, and anxieties of all hearing parents of deaf children are expressed here with power and simplicity. In the epilogue, Lynn Spradley as a teenager reflects upon being deaf, her education, her struggle to communicate, and the discovery that she was the focus of her father’s and uncle’s book. A book at once moving and inspiring….
Swiller, Josh. The Unheard: A Memoir of Deafness and Africa. 2007.
From Publishers Weekly:
Although doctors diagnosed Swiller’s deafness early enough to fit him with hearing aids, …[he] still felt different. As a young adult he drifted from college to college, job to job, relationship to relationship, never quite finding what he was looking for: a place beyond deafness. He found that place in the mid-1990s, when the Peace Corps posted him to a remote corner of Zambia. During his two-year stint working in a run-down health clinic in a rural village, he fought for irrigation projects and better AIDS facilities. He befriended a young local who played chess and provided constant counsel in the ways the young white American could—and did—run afoul of local tribesmen (and women) and their age-old ways. Deafness would have provided a unique sensory filter for anyone, yet while Swiller may have his particular aural capabilities, he also has literary talents—an eye, a voice and a narrative talent—in abundance….
Videos (movies and documentaries): (in alphabetical order by movie title)
Beyond Silence (1998) Director: Caroline Link
Amazon.com Editorial Reviews:
…[A] young woman’s battle for independence and her deaf parents’ struggle to understand her gift for music. Given a clarinet by her … aunt, Lara is immediately consumed by a new passion her parents cannot begin to fully comprehend. Determined to follow her dreams, Lara’s ongoing pursuit of music creates an ever-widening rift that eventually threatens to tear apart her once close-knit family. …
Children of a Lesser God (1986) Starring: William Hurt, Marlee Matlin Director: Randa Haines [In Knight Library video collection]
Amazon.com Editorial Reviews: Mark Medoff’s tough play about deafness is sweetened and softened in this 1986 film adaptation…. William Hurt plays a teacher newly hired at a school for deaf children, and Marlee Matlin is the deaf and withdrawn janitor who captures his attention. Romantic and heartfelt, the film makes its audience care very much about its two leading characters, and wince when Hurt’s well-meaning instructor allows Matlin’s handicap to become a problem…. –Tom Keogh
Hear and Now (2007) Director: Irene Taylor Brodsky .
From IMDB.com: In this deeply personal memoir, filmmaker Irene Taylor Brodsky documents her deaf parents’ complex decision to leave their world of silence and undergo a dangerous surgery to get cochlear implants — the only one of its kind that can restore a sense. At the age of 65, Paul and Sally Taylor decided they wanted to hear their first symphonies, hear their children’s’ voices, and talk on the phone. How will this operation transform them, their relationship with each other, and the deaf world they might leave behind? This is a story of two people taking a journey from silence to sound. The question is, what will they make of it, and what might they gain — or lose — forever? – Irene Taylor Brodsky
Sound and Fury (2000) Director: Josh Aronson
Amazon.com Editorial Reviews: … a compelling and often devastating documentary…. Two brothers, one deaf and one hearing, grapple with a decision concerning their deaf children, and the debate that rages through the extended family turns less on technology and medical concerns than social politics and culture. The deaf parents of a school-age girl fear what the [cochlear] implant would do to her unique identity, while the hearing parents of a toddler see no question at all. Aronson gives all sides their say, but ultimately the increasingly angry arguments reveal prejudices and fears from both sides and split the once-harmonious family, much like they have split hearing and deaf communities across the country. –Sean Axmaker
Sound and Fury Six Years Later
http://www.worldcat.org/oclc/70896370?tab=holdings
Through Deaf Eyes (2007) Director: Diane Garey, Lawrence R. Hott
From Amazon.com reader review: As a deaf person and an instructor of American Sign Language and Deaf Culture/History, I heartily recommend this as a nicely-done glimpse into the huge breadth of American Deaf History. All the highlights are here: Thomas Gallaudet and Laurent Clerc, Gallaudet College/University, A.G. Bell, Milan Conference, oralism, cochlear implants, etc… – Chris (Centerville, Utah)
Electronic resources: (in alphabetical order by website title)
Alexander Graham Bell Association for the Deaf and Hard of Hearing
http://www.agbell.org/DesktopDefault.aspx
From their website: “…helps families, health care providers and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention. Through advocacy, education, research and financial aid, AG Bell helps to ensure that every child and adult with hearing loss has the opportunity to listen, talk and thrive in mainstream society. With chapters located in the United States and a network of international affiliates, AG Bell supports its mission: Advocating Independence through Listening and Talking!”
American Sign Language Browser – Online ASL dictionary
http://commtechlab.msu.edu/sites/aslweb/browser.htm
Deaf Read – A feed of the “BEST DEAF BLOGS AND VLOGS”
http://www.deafread.com/
D-PAN
http://www.d-pan.com/
From their website: “D-PAN exists to bridge the existing gaps between the deaf/hard of hearing community, the entertainment industry, and the public at large. We create the content, support infrastructure, communications media and distribution channels necessary to effectively cross these barriers.”
National Association of the Deaf
http://www.nad.org/
From their website: The National Association of the Deaf (NAD), established in 1880, is the oldest and largest constituency organization safeguarding the accessibility and civil rights of 28 million deaf and hard of hearing Americans in education, employment, health care, and telecommunications….Programs and activities include grassroots advocacy and empowerment, captioned media, certification of American Sign Language professionals; certification of sign language interpreters; deafness-related information and publications, legal assistance, policy development and research, public awareness, and youth leadership development.
Service to Mankind – Sertoma
http://www.sertoma.org
From their website: Sertoma’s primary service project is assisting the more than 50 million people with speech, hearing and language disorders. Sertoma also sponsors community projects to promote freedom and democracy, to assist youth and to benefit a variety of other local community needs, as identified by the individual clubs.
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I’ve read more than a few memoirs now (Deaf like me, Deafening for starters) where the child is completely isolated in a family of ignorant, if well meaning hearing people. The family is either unaware or afraid of sign language and they spend hours trying to teach the Deaf hero/heroine English.
I feel so sad for the families who do that in ignorance. And, I’m disgusted that families are being told to do that for their children today. Medical specialists are insisting that our precious d/Deaf kids aren’t capable of learning both ASL and English. Everyone really thinks that they are doing the best thing for their children.
I grew up less than 60 miles from Washington D.C. and Gallaudet. I was an activist from an early age, raised by parents who protested everything, starting with the Vietnam war in the 1960s. The 1988 student uprising at Gaulladet, wasn’t at the center of my senior year of high school, but it certainly left an impression. How cool that the students of a venerable institution of higher learning took over their own campus and got their demands met. I didn’t even remember what the protests were about until I took a beginning sign language class a year ago. And, of course, the significance of those events has become much more important to me now. Both, with the perspective of hindsight (or history) and the ramifications of what they accomplished for my own family.
Back to our story. I remember about a year before my DB was born I was taking a walk with a friend of mine who just found out that her niece was deaf. I was horrified to find out that her niece was getting an implant. Why doesn’t the family just learn ASL? She’ll get to go to Gaulledet when she’s ready for college. Case closed, everything’s settled. How funny, that I was going to get to make some of the same decisions in just a few years.
We are trying to be bilingual and I think we’re doing a decent job of being bicultural. We love our DB and we accept him for who he is. We’re proud of him too.
We’re teaching his sister how to sign and we hope that she grows up bilingual as well. Although we do hope that our DB stops tackling her soon.
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Tags: Deaf culture
Hello world!
I’m thrilled to see the new blog for other ASL CI families. I’m not sure where I’m going with this one yet. But, I’m going to be making a presentation in May and I wanted a place to put down some of my ideas.
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