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Life Arts    H4'ed 4/12/13

Far From the Truth

By       (Page 1 of 2 pages)   8 comments
Follow Me on Twitter     Message Lisa A. Goldstein

On page eight of Andrew Solomon's Far From the Tree, I started incredulously highlighting lines in my Nook. In this book, he writes about children who are different from their parents because they have schizophrenia, autism, Down Syndrome, or even because they're prodigies. He delves into the search for identity and how families deal with each diagnosis. The first chapter after the introduction is about deafness, which piqued my interest, as I'm deaf myself. By the end of that chapter, I had amassed 14 pages of troublesome quotes.

    Solomon may have spent over 10 years working on this National Book Critics Circle Award-winning book, drawing on 40,000 pages of interview transcripts with more than 300 families; but as a writer, he has fallen short. It is clear he did not fully pursue or evaluate the information he gathered on deafness, because it is incredibly biased. Therefore, readers who have little to no experience with the topic will come away with large misconceptions about people with hearing loss, negatively influencing the future of many families.

   In the chapter on deafness, Solomon effectively nullifies who I am and what many of us have been advocating for our whole lives. As a journalist who was born deaf and knows very little sign language, the last thing I want is for a hearing parent of a newly diagnosed deaf child to get the impression that by teaching their child to lip-read and talk, "they can neglect other areas of their children's education," or that "years go by as [the children] sit endlessly with audiologists and speech pathologists instead of learning history and mathematics and philosophy."

   Yes, those quotes made up one lovely paragraph, and were the first I highlighted. I can (literally) speak from experience that this is patently untrue, and I'm not the only one. I grew up lip-reading and speaking, and was mainstreamed my whole life. I had a great childhood, with no adverse repercussions from being raised oral. I am grateful to my parents for giving me independence. My many speaking deaf friends have similar happy experiences.

In fact, "mainstreaming is a large part of the listening and spoken language approach," says Elizabeth Boschini, MS CCC-SLP. "So if these oral children are missing out on academics, so are their mainstreamed hearing peers." A sub-par education certainly isn't as much of a concern with at least 80 percent of deaf children mainstreamed today -- usually by kindergarten. Accommodation is also eased by the increase in technology.

   If Solomon is to be believed, oral communication places a strain upon the deaf member of the family. "The decision to sign shifts the power base," he writes, "placing the greater strain of understanding upon the hearing members. In effect, parents can learn Sign and always speak awkwardly to their child, or they can push their child toward oralism and know that he will always speak awkwardly to them."

   My friend Kelly Gilkey -- a NASA engineer who has a cochlear implant -- has a great response to this statement: "The decision to raise a child as oral is not about power.  Conversely, the parent wants to empower their child to use his or her own voice in society.  For children who receive hearing technology (hearing aid, cochlear implant, etc.) and speech therapy from a young age, their speech is typically very easily understood by others and they listen to their world effortlessly and are fully mainstreamed into hearing society."  

   Let's face it: Most of the world speaks. As Stacey Carroll, a cochlear implant-wearing nurse practitioner friend points out: "If you live in an area where most of the community speaks a certain language, you should probably learn it and assimilate within that community." Indeed, if my grandfather -- who emigrated from Romania at 10 -- hadn't done so, he wouldn't have been able to own a successful pharmacy.

   Many of Solomon's claims in the chapter about deaf people are outdated, outrageous, and lack attribution. He advocates sign language over oralism, which is harshly portrayed. Sign language is more dramatic and romantic, which is part of the problem. People who were raised with the speaking approach have become the "anonymous deaf," because we've assimilated into society. Members of the Deaf Culture, who advocate sign language and Deaf identity, are "vocal" about fighting perceived threats to their existence. A subset of Deaf Culture is militant, and attracts a lot of attention. To them, deafness is their whole identity; they even refer to themselves as Capital-D Deaf. For me, it's just one part of who I am.

   Solomon clearly fell into the common trap of being intrigued by Deaf Culture and didn't bother looking beyond their stories or literature to represent deafness as a whole. He writes that people with cochlear implants are re-classed as hearing, but this is false according to the Americans with Disabilities Act; when the cochlear implant comes off, we're still deaf. He's missing the large group of happy deaf individuals who receive an oral education -- an approach that's only increasing due to mandatory newborn hearing screening as well as cochlear implants.

   "Children with implants have experienced social difficulties," Solomon writes. This directly contradicts a research study, which found that 82 percent of the children who participated in the study and were raised only with spoken language had a high level of social well-being ( International Journal of Pediatric Otorhinolaryngology , July 2008). As Cochlear Implant Online -- a website that creates awareness of cochlear implants -- summarized, "The analyses showed that the communication mode at home was the most highly associated factor. A statistically significant association was found between the level of social well-being and speech understanding, speech production, and vocabulary. Children who were exposed to a spoken language had considerably better odds of having a high level of social well-being compared to children with a mixture of spoken language and sign support or sign language."

Proof of Solomon's unfair bias against speaking deaf people is also evident in his bibliography. I can think of at least five autobiographies of successful speaking deaf people that aren't included. The Alexander Graham Bell Association for the Deaf and Hard of Hearing (also known as AG Bell) -- which advocates independence through listening and talking -- is only mentioned once. Its 112-year old, peer-review publication, the Volta Review, is quoted only twice. Of the three cochlear implant companies, Solomon only cites two -- albeit briefly.

Compare that to 10 citations from American Annals of the Deaf and 21 citations from the Journal of Deaf Studies & Deaf Education, both of which are heavily biased towards Deaf Culture. The Gallaudet University Press -- which isn't a peer-reviewed journal -- is cited 24 times, along with eight for Sign Language Studies, and three for the National Association of the Deaf. All are well known for their bias towards signing.

Surprisingly, Solomon doesn't cite anything from the American Speech Language Hearing Association, peer-reviewed journals like the Journal of Speech, Language & Hearing Research and American Journal of Speech Language Pathology. Well-known experts in the field like Geers, Flexer, Estabrooks, and Madell are ignored.

Take Solomon's unfounded claim that "only a third of deaf children complete high school, and of those who attend college, only a fifth complete their studies." In The Journal of the American Academy of Audiology (September, 2001), Donald M. Goldberg and Carol Flexer refer to an earlier study they did in 1993. In both investigations, the same population of people was used. They were either born severely or profoundly deaf, or were deaf prelingually. They were also amplified quickly and enrolled in early intervention programs that emphasized an auditory-focused, family centered communication approach (Pollack et al, 1997). As a result, they were fully mainstreamed, had "typical" high school graduation milestones, and continued education, often at "mainstream" colleges and universities. "The auditory-verbal graduates who completed their postsecondary education routinely moved on to a variety of impressive employment opportunities and were integrated into "mainstream" communities and society in general," they wrote. "In summary, in both 1993 and 2001, what is most impressive is the high degree of consistency of these remarkable findings."

Solomon went to a National Association of the Deaf convention, but didn't bother attending an AG Bell convention. Perhaps if he had, he would have discovered successful speaking deaf adults who cover the gamut of professions, including engineers, computer scientists, doctors, and lawyers. He would have also met speaking deaf teenagers who walk around with their iPods, talk on cell phones, and attend classes at mainstream schools and universities. Most importantly, he would have seen how happy and grateful they are for their speech and ability to lip-read/hear, and how this has led to rich, fulfilling lives.

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Lisa A. Goldstein is a freelance journalist with a Master's in Journalism from UC Berkeley. She was also born profoundly deaf and raised to lipread and speak.
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