Inside Cochlear Implant Online: Who Are They

On June 3, 2008 the DeafRead team announced that they were inactivating Rachel Chaikof’s blog, Cochlear Implant Online [CIO], from the DeafRead aggregator. Immediately since her debut on DeafRead on January 13, 2008, Rachel and her blog has been embroiled in controversy. Some DeafRead viewers felt her blog was merely a thinly veiled advertisement for cochlear implants.

Due to the intense controversy over Rachel’s blog and its subsequent removal from DeafRead, I decided to do some digging. Due to the amount of the information I have discovered, this will be broken up into three blog posts. All of the information I have discovered is on the Internet – mainly from Rachel’s blog itself. The information I am presenting will be undoubtedly controversial, and in all likelihood, I will be labeled anti-CI and possibly a stooge of DeafRead.

So allow me to state this: I believe that cochlear implants are a tool, and it is all about how people use that tool. In regards of DeafRead, while I am friends with some of the DeafRead editors, DeafRead business remains their business, and nobody dictates what I blog. All of those things I believe, do not in any shape or form diminish the facts that I am going to present here.

To understand the controversy a bit better, I believe that we need to look at the backgrounds of Melissa, Rachel, the history/purpose of CIO and the purpose of the Cochlear Awareness Network [C.A.N.] first. All of the information about their background is pertinent to the controversy itself and will become clear later on.

Who’s Who

Melissa is the mother of Rachel, the blogger of CIO. We do not know very much about Melissa herself, but we do know that Melissa is a volunteer for C.A.N., per her comment #25 here on June 3, 2008. Then I found this tidbit – Rachel writes on March 3, 2008, “So, at one point, I saw a cochlear implant organization magazine on the kitchen table and picked it up. my mom was a writer and an editor for the magazine. [Emphasis added]

Rachel is the blogger of CIO, and was one of the first at such a young age to receive a cochlear implant (a Nucleus brand). In high school At her university, she was is an editor of her school newspaper. Currently, she is majoring in Photography at a private arts university in Georgia, and aspires to be a photojournalist one day. Rachel is also the winner of the Graeme Clark scholarship (February 2007), and is a volunteer for C.A.N. as of December 2007.

History and Purpose of Cochlear Implant Online

The exact date of CIO’s inception is unknown but on June 2, 2008, Rachel states CIO has been around since 2001. Since Rachel was not of age in 2001, it is reasonable to assume that her mother, Melissa was involved in establishing CIO. However, the CIO archives do not go back to 2001, but only back to 2006. So it is extremely difficult to ascertain how active CIO was prior to 2006.

As for the purpose of CIO, Rachel writes, “This website is not the place for me talk about my personal life. This website is merely a cochlear implant resource.

Purpose of Cochlear Awareness Network

Onwards to C.A.N., which is a major component of this controversy. What exactly is C.A.N.? They explain on their website’s FAQ: The Cochlear Awareness Network is a group of volunteers each of whom have lived deaf but have had their hearing returned through technology. They have chosen to be members of the Network to tell their stories, proqactively [sic] raising awareness for the wonderful changes in their lives.

Basically Advocates tell their own story. They do this by making presentations to community and interest groups or clubs or one-on-one to potential receipients. [sic] They may also seek publication of their personal story in local newspapers. They may also help out at trade shows and talk to people referred by their local Cochear [sic] Implant Clinic.

They continue on to explain the benefits of being a C.A.N. volunteer, or rather as they call it, advocate:

* Sharing your story helps others know there are solutions to many kinds of deafness
* Provides a resource for others
* Professionals hear your story and tell their patients
* Corrects wrong information in the market place
* Helps people make a decision about a Cochlear Implant or Baha procedure.

Next – Where Is The Full Disclosure?

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