|Letters to Parents Magazine|
|Friday, 11 September 2009|
The Parents Magazine, May 2009 issue quoted on page 32, “Deaf kids who receive cochlear implants report an improved quality of life- and the younger the age at which they receive them, the better, finds a new study in the Journal of Speech, Language, and Hearing Research.”
Read on...To the Editor,
Hello, my name is Danielle Reader and I am a parent to a 7 year old Deaf son, Jaden, who has a cochlear implant. The quote above from The Parents Magazine May 2009 issue is very misleading. With as many as 3 out of 1000 babies being born with hearing loss, 90 percent of those babies will be born to hearing parents such as myself. To read this quote in your magazine, that a cochlear implant improves quality of life, can lead parents such as myself to be lead into a false hope. On top of that, as we seek out cochlear implants there is a critical amount of time lost for our deaf/hard-of-hearing baby in which they are going without language. Our thoughts become one track minded in finding that “better quality of life” for our child.
My son’s quality of life has been tremendously negatively affected by his cochlear implant. Not only were his language needs not being met for the first 4 years of his life, but that in turn affected his social, emotional, and cognitive development. These delays still negatively effect him as he is 7 years old, going into the first grade, and struggling to catch up with language. However, I can say that since introduction to American Sign Language; a natural, visual, conceptually accurate, 100 % full access to the world around him, full language all in it’s own, he is making huge strides and has come to life. He actively participates in sports, is very proud to be Deaf, is bilingual in that his first language is ASL but reads and writes in English. There was only one thing that my deaf baby needed for a quality life and that one thing was language. Language is not only a need, it’s a human right. For 4 years I deprived my deaf baby of a human right to language because I fell into a false hope, like that you are quoting and giving to your readers, that a cochlear implant is going to fix these deaf babies and that if done the earlier the better. However, where in your article does it address the need for language during this time? Where in your article does it address the adverse effects that lack of language will have on these deaf babies and their quality of life? Did the writer of this article thoroughly research and find Deaf children and families that have cochlear implants who would be more then willing to share their stories about what really gave them a quality of life, not the cochlear implant? Or may I suggest writing an article on Deaf babies that are given language from the beginning and the quality of lives that they are living now with or without a cochlear implant? Better yet, how about an article on Deaf babies born to Deaf parents. These babies don’t go a day without language. Show your readers the truth about what really gives these deaf babies quality of life.
I must say that I am deeply saddened with your magazine and the quote from above. Not only is it truly misleading, it is very well misleading many hearing parents of deaf babies down a road of false hope. How does it feel to know that your magazine article could be negatively affecting a deaf baby’s life right now? That this one quote, “Deaf kids who receive cochlear implants report an improved quality of life”, could cause a lifetime of hurt and struggles for many deaf babies, deaf babies who will one day grow up to be adults themselves suffering the consequences of their parents ill-advised decisions?
Please, I beg you, next time an article is going to be written having anything to do with Deaf/Hard-of-hearing issues, contact the real professionals of these matters…the Deaf people themselves. They are the one’s who live this, who know best.
Thank you for your time and consideration,
Danielle Reader, CA
To the Editor,
I am the parent of a daughter who is Deaf. She does not use speech or hearing. Her language is American Sign Language. Her quality of life has nothing to do with whether or not she has a cochlear implant. Her quality of life has everything to do with social, emotional, and cognitive growth and development. With ASL she didn't have to be delayed in language to access the same developmental milestones as hearing children. She gets along fine as a bilingual person using ASL and English (not spoken).
My daughter graduated from a School for the Deaf where she had more opportunities than my hearing daughter had in public school. She recently graduated college in the top part of her class. She has friends all around the U.S. and is extremely happy.
Too many hearing parents who find out their child is deaf are getting a pathological view of what it means to be deaf from the medical society. The pathological view has a tendency to disable rather than enable a child. It makes false promises that the cochlear implant will "fix" the child and make them hearing.
According to the National Institute for Health at the Center for Disease Control, Cochlear implants Do Not Restore Hearing. (Dr. David Pisoni, Indiana University) This is where many parents are being deceived by the medical society and cochlear implant manufacturers. The FDA only requires companies to prove "efficacy"...does the implant work? They do not require them to prove "effectiveness". The "effectiveness" (outcomes and benefits) are different for all children. So what is happening with all those children who have poor to average outcomes? One answer is delays in language. Delays in language by all means affects the quality of life. There have also been children who have suffered a variety side effects from the cochlear implant along with many who have died after getting the implant.
Language does not mean spoken English. ASL is a visual language that is 100% accessible to Deaf children. Deaf adults of Deaf parents when asked how they learned ASL respond that they learned it naturally just the same way that hearing children learn spoken language. Deaf children who have hearing parents can learn ASL and their parents can learn it right along with their child. Our family is proof of this.
The Journal of Speech, Language, and Hearing Research features articles by those who make a living off Deaf and Hard of Hearing people. The majority of articles are written by "hearing" individuals. The quotes they make reflect what they are selling. The Deaf Community (ASL users) have nothing to sell but "quality of life".
I recommend you consider a future article about culturally Deaf people and their quality of life. Thank you for taking the time to read this message.
Tami Hossler, FL
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