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Deafread, you want full disclosure?!

Posted Jun 25 2008 4:09pm

Well, this afternoon I got a little surprise in my email from a fellow blogger name Rachel Chaikof ofCochlear Implant Onlineinforming me that DeafRead editors have removed her blog from their aggregator website.Before I continue let me give you a little background information.In 1989, when she was just two years old, Rachel became one of the first children to receive a cochlear implant when the FDA clinical trials on them.She is now 21 years old and bilateral success story.Obviously, she has a lifetime of experience with a cochlear implant and a tremendous amount of information to offer from a unique perspective: growing up with a cochlear implant.She continually presses the ever-important issue of how crucial AVT (Auditory Verbal therapy) is to a child that has gotten implanted young.In my opinion, this is probably the best informative blog for parents of a deaf child considering a CI that a cochlear implant is not instantaneous miracle.It takes work for it to work!

I ran over to see her post:DeafRead chooses to remove CI Online from their site!

I received an e-mail from DeafRead editors saying that Cochlear Implant Online can no longer be on DeafRead simply because I am a Cochlear Awareness Network volunteer member, and they think that my website is a COMMERCIAL website. They clearly stated in their e-mail that I am “employed as a volunteer” which makes absolutely NO sense! They stated that I am violating this policy:

*SHOCKED*

I went over to see thepolicy(by the way DR editors, you spelled commercial wrong, twice)

6) Commerical Sites



We do not link to commerical sites for the purpose of generating profit, other than our own (we have expenses to cover!).

ThenTayler,who is a DeafRead editor decides to post this entry:Blogs disclosing professional relationships earns trust

I quote him on this:

To be clear, blogs can carry advertisements outside the entry.We understand the need to make ends meet.However, product promotion of any type cannot exist in the entry itself.This is different from a neutral blogger who, for example, is reviewing a product.

I did a simple search on Rachel’s site concentrating on entries and found not one entry mentioning Cochlear Awareness Network.

Then I wondered what the difference was between Bionic Ear Association, which is Advanced Bionics volunteer support group that I am a proud member of and Cochlear America’s volunteer driven support group, Cochlear Awareness Network.So, I did me a little research!

The Bionic Ear Association (BEA) is a FREE support network available to CI recipients, candidates, and families!Advanced Bionics understands that choosing a cochlear implant for yourself or your child is a decision that affects the rest of your life.



The mission of the BEA is to improve the quality of life of those impacted by hearing loss through cochlear implant education, awareness, mentoring, and support for recipients, candidates, families, and their support network (educators, therapists, clinicians).We are committed to an environment of friendliness, empathy, experience, integrity, and spirit for our members.

AND

The Cochlear Awareness Network (CAN) is a group of committed volunteerswho are either Cochlear implant recipients or Cochlear Baha recipients.Each and every one of them has had their lives changed through either receiving a Cochlear implant or a Cochlear Baha.

Their role is that of an ambassador, talking about their experience in the hope of bringing hearing to more people than ever before. They offer support, but not advice. They share their knowledge, but they are not medical professionals.The volunteers are not employees of Cochlear™ and participate in these activities in their own time.

They are both free and volunteer based support groups that offer support and raise awareness about cochlear implant.

Since I am a BEA volunteer for the Bionic Ear Association and a mentor for CI candidates because I genuinely LOVE making sure that someone understand all aspects of what a CI entails..The amount of time that I dedicate to my own blog not to mention all of the blogs I read, the comments I write, the forums I frequent, the emails I reply to and not too mention, the research I keep up on only contributes to my own satisfaction that I am helping someone.

Now I have a minor issue with this stupefied decision to pull Rachel’s blog off of DeafRead because they think it is a commercial website and she is a “employed volunteer.”That is a trope of all tropes. I think it is preposterous that someone has to disclose his or her personal affiliations to free support groups in order to be part of a simple aggregator’s website.The lot of us did not create our blogs solely for the sake of being on DeafRead.I created MY blog for my own personal accord and to share with others that are curious and considering a CI.I do not contribute the success of my blog to a website that just collects deaf related blogs!The only thing that DeafRead has done is introduced me a panoptic variety of different degrees of deafness that for the most part, I am extremely thankful for.

This begs the question of what is the difference between Rachel sharing her story and experiences on her own personal blog and me sharing my story and experiences on mine; all the while, we have personal NOT professional affiliations to our chosen cochlear implant company volunteer based support groups?How can you, Deafread editors, even begin to prove that Rachel makes a profit off because of her personal affiliation with Cochlear Awareness Network?You can’t!I want to see proof right now to substantiate your decision to remove her blog!While I am at it, I am going to tell you just how Rachel profits the same way I profit: when I get a tearful email for just offering words of encouragement, a post dedicated to my unselfish support , a heartfelt comment just for writing what I write.That right there DeafRead editors is worth more than any commercially made greeting card.

This is a poorly executed decision lacks not one shred of evidence. The fact that your vague attempt to show your moral fiber in the last paragraph of your post Tayler is circumstantial at best.

To be a responsible and ethical blogger, one must reveal any commercial affiliation. Not to do so jeopardizes the credibility of the whole blog and DeafRead. The lack of transparency also violates the trust of DeafRead viewers.

Neither Rachel or I make no bones about what brand of implants we chose which is posted all over our entries. I mean for goodness sakes, look at the title to our blogs! Common sense editors!!!

If its disclosure you want, disclosure you get.

I’m a BEA volunteer and a mentor for Advanced Bionics.

I’m a member of the Hearing Loss Association of America.

I’m MCSE (Microsoft Certified Systems Engineer) for Microsoft Corporation.

I’m a member of the following social networking sites which are all considered commercial:Facebook and MySpace

I affiliate myself with Shop Rite, A&P, PathMark and Stop-N-Shop by their customer appreciation cards!

Hell, I sell commercially made cookies for Girl Scouts of America!

How is that for full disclosure DeafRead editors!?

Blog list pertaining to this:

Cochlear Implant Online

Tales of CI Gal

Surround Sound

An American Mom in Tuscany

Aaron Cues

Living with Questions

Candy

Buck Full of Crab

Ambling Rambler

ASL-Cochlear Implant Community

Sam Spritzer

Der Sankt Speaks

All the Young Dudes

Anonymous Deaf Law Student

Kokonut Pundit

Cochlear Kids

Cyborg Queen

At the Rim

Confessions of a Cochlear Implantee

Simply Saunière

Musing on Communication



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