Inside Cochlear Implant Online: Ethics?

(Continued From Part Two)

The Link Between Cochlear Implant Online and C.A.N.

It is not precisely clear what skills C.A.N. is referring to in their FAQ, but when one looks at the Benefits section, the training aspects are outlined. Advocates share their stories, provide resources and so on. This appears to directly fit in what CIO is doing as a cochlear implant resource website. This leads one to easily think that the activities of CIO is solely for being part of the C.A.N. advocacy efforts especially considering the fact that both bloggers, Rachel and Elizabeth are C.A.N. volunteers, and Melissa, which could be arguably called the backbone of CIO, is a C.A.N. volunteer as well. This makes a total of three C.A.N. volunteers involved with CIO.

But could all of this just be a coincidence? That’s difficult to say. Note that Melissa writes, (comment #25), “Therefore, she gets absolutely no compensation from Cochlear for her volunteer work.” But she didn’t state whether CIO was part of their volunteer activities for C.A.N. or not.

Melissa in her comment (#151) writes, “My hope is that Rachel’s generation forward will be able to transcend this bitterness. She put her blog up on DeafRead to show others what is possible today. Whether or not DeafRead reinstates her blog, she’ll still be online just as she was for 7 years before she put her website on DeafRead. Parents will find her, and then they will find only her and so will only hear what she has to say. By booting her from DeafRead, the editors have shot themselves in the foot, for when parents found Rachel’s blog on DeafRead, they found all points of view in one place. Now, instead, they will only find Rachel’s.” [Emphasis added]

There is no way to pinpoint just how active CIO was active before 2006, since like stated previously, the archives only go back to 2006. When one looks through the archives, there is only one entry in the year of 2006.

Then in the year of 2007 there are only four posts. That brings the total of CIO’s entries prior to joining DeafRead in January 2008, to a grand total of five posts. Now, after joining DeafRead, and before being forcibly inactivated by DeafRead, CIO had one hundred three posts on DeafRead in the span of almost five months. That averages to seventeen posts per month.

Just a mere coincidence there?

The Question of Companies and Their Marketing Ethics

Now, there are some who argue that everyone who read CIO and the DR Team should have known C.A.N. was owned by Cochlear Americas because it’s obvious to them. However, if one looks at the C.A.N. website, in my opinion, it is not immediately apparent that this is owned by Cochlear Americas. The website has a garish background, cheap formatting and numerous typos within the FAQ and elsewhere. While there is a link to Cochlear Americas, there is no statement on C.A.N’s website that they are owned by Cochlear Americas. One has to go to the Cochlear website to see that in fact, Cochlear Americas owns C.A.N. The network happens to be also mentioned in Cochlear Americas’ 2007 annual report.

It goes without saying that C.A.N. being managed by a for-profit company that sells the very product that the network advocates for, Cochlear Americas and the rest of the cochlear implant industry can only stand to benefit from it. It is highly dubious that C.A.N. advocates would present any facts that would cast nothing more than a positive light on CI products.

These actions lead to the question of whether CIO and C.A.N. are engaging in the practice of stealth marketing, which is generally considered to be unethical. From the Advertising and Marketing Bulletin, Stealth marketing, a subset of word-of-mouth marketing (“WOMM”) strategies, is marketing that promotes a product without disclosing any direct connection between the advertiser and the message. [Emphasis added]

Not Only Stealth Marketing but Astroturfing?

And this also leads to the question of whether C.A.N. is engaging in not only stealth marketing, but also what is known as astroturfing. Wikipedia defines astroturfing as: The goal of such a campaign is to disguise the efforts of a political or commercial entity as an independent public reaction to some political entity—a politician, political group, product, service or event. Astroturfers attempt to orchestrate the actions of apparently diverse and geographically distributed individuals, by both overt (“outreach”, “awareness”, etc.) and covert (disinformation) means. Astroturfing may be undertaken by anything from an individual pushing one’s own personal agenda through to highly organized professional groups with financial backing from large corporations, non-profits, or activist organizations.

One would think that C.A.N. should know about the ethics of marketing, when their director, Jeff Graunke, clearly stated on his LinkedIn page – which now apparently is no longer available, but here’s a screenshot of it: Jeff Graunke\'s LinkedIn Page that clearly states he was a former Regional Sales Manager for Cochlear Americas.

This information is especially disturbing in light of the Federal Trade Commission’s statement, which was published by the Washington Post in 2006, about word of mouth marketing. In the first paragraph of the article, it states: The Federal Trade Commission yesterday said that companies engaging in word-of-mouth marketing, in which people are compensated to promote products to their peers, must disclose those relationships.

How can C.A.N. not know marketing ethics? How can Cochlear Americas and other cochlear implant companies not know this either? How can Melissa, considering her C.A.N. training and her magazine writing/editorial background, not have any problems with this?

In light of all of this information, which I never anticipated to just be several mouse clicks away, I feel quite comfortable in saying that DeafRead was fully justified in removing Cochlear Implant Online from their subscriptions. This appears to go far beyond Cochlear Implant Online and all the way up to Cochlear Americas itself. With each mouse click, I uncover more and more information like this. The connections, links and information seems to be never-ending, and I’ve worked on this for long enough. And I’m pretty sure people who are reading this will take it upon themselves to verify the information, and uncover more information. Who knows what we will find next? I am just left standing here, completely staggered…

About A Deaf Pundit

A Deaf Pundit holds a Bachelor of Science degree in Public & Nonprofit Administration. In her spare time, she enjoys fantasy novels, gaming and wandering the vast Deaf social media world. View all posts by A Deaf Pundit

67 responses to “Inside Cochlear Implant Online: Ethics?

  • Inside Cochlear Implant Online: Disclosure? « The Deaf Edge

    […] Next – The Link Between Cochlear Implant Online & C.A.N. Possibly related posts: (automatically generated)Cochlear is Listening to You   […]

  • Paotie

    Deaf Pundit ..

    Your said, “The goal of such a campaign is to disguise the efforts of a political or commercial entity as an independent public reaction to some political entity—a politician, political group, product, service or event. Astroturfers attempt to orchestrate the actions of apparently diverse and geographically distributed individuals, by both overt (”outreach”, “awareness”, etc.) and covert (disinformation) means. Astroturfing may be undertaken by anything from an individual pushing one’s own personal agenda through to highly organized professional groups with financial backing from large corporations, non-profits, or activist organizations.”

    I wrote the FCC the EXACT SAME THING about DeafRead.

    Thank you for supporting my evidence – I am gonna refer these articles to them.

    Excellent!

    :o)

    Paotie

  • White Ghost

    What about the Girl Scout Organization?

    Girl Scout Scholarship?

    Girl Scout Cookies?

    Com’n!

    Good Work, Deaf Pundit.

    I’ve always said that your’e one of my favorite blogger. 😉

  • Dianrez

    Great job, DP! Brilliant! Keep on researching and blogging!

    Although Cochlear America is clearly in a different category than DeafRead or the Girl Scouts, the same brush could theoretically be used to tar both.

    Still, their size, nonprofit status and gross revenues are not comparable and there is more onus on CAN to be more upfront in their information blogs. A pharmaceutical or medical device maker has critically much more public responsibility.

  • A Deaf Pundit

    Okay. I’ll bite, Paotie… I don’t understand. How is DeafRead astroturfing? Please explain and show us the evidence that backs your reasoning.

  • White Ghost

    For instance….

    here it is:

    http://www.highbeam.com/doc/1G1-117612065.html

    I know it’s complicating but that is how it works.

  • Candy

    Still, I’d say you’d need more than what you just handed out.

    DR still should have contacted Rachel personally and do the Q&A bit and get more information.

    If it was Melissa that ran CIO, I might (Just might) have agreeed. But, Melissa is merely the MOM of Rachel and throws in her input in the comment sections only.

    If you had more evidenced that shows a relationship between Rachel’s blogging and her profiterring directly from CAN or Cochlear of Americas, then I think I might understand, yet, at the very same time DR cannot just keep changing their guidelines to suit their needs to fit the situation at hand.

    Getting a scholarship is not included IMO.

    You need more concrete evidence.

    As for DR, they need to set a good example and they are not. That’s the trouble with certain deaf people. There are things they CAN do that others can’t! And I’m very curious how FCC will take Paotie’s complaint as well as many who have already submitted similar complaints regarding DR.

  • Paotie

    Deaf Pundit ..

    Surely, you are much smarter than that.

    :o)

    Paotie

  • moi

    Amazing! Thank you so much for taking the time to research this. DeafRead has my full support in their decision. How sad that Rachel has become a pawn in a multinational corporation’s marketing strategy … and that she, and others, see nothing wrong in this.

  • Paotie

    Deaf Pundit ..

    Didn’t take long.

    Moi said, “.. has become a pawn in a multinational corporation’s marketing strategy .. ”

    She’s describing DeafRead perfectly well, based on Tayler and Jared’s comments.

    Time for you to stop playing dumb.

    :o)

    Paotie

  • Dr. DonG.

    DP –

    Good research! It is clear that the Cochlear companies are BIG business, and they engage in a number of activities and actions that are ethically questionable. For example, they also offer doctors financial and other rewards for implanting people, especially to use their brands. So the doctors have more motivation to implant rather than use the screening processes that have been recommended by the FDA or whoever determines those. The concept of “astroturfing” is new to me, but it makes sense. As for Paotie’s comment that DeafRead is engaging in this very same thing, I fail to see the connection, even with White Ghost’s link. Unlike the Cochlear corporations, DeafRead is not promoting any specific product, nor are they benefiting from sales of any product beyond their advertisements (out in the open) for Sprint, etc.

  • Paotie

    Dr. DonG ..

    You said, “DeafRead is not promoting any specific product, nor are they benefiting from sales of any product beyond their advertisements (out in the open) for Sprint, etc.”

    I’ve noticed you once praised militants and then complained about militants. Of course, I can see why you are confused, as usual.

    :o)

    Paotie

  • White Ghost

    Dr. DonG,

    You said, “Deafread is not promoting any specific product, nor are they benefiting from sales of any product beyond their advertisements (out in the open) for Sprint, etc.”

    Why would Tayler and DR let Joey Baer to adverised the new Sprint Blackberry into the DR front page?

    Why would he have pushed all of us to sign the petition against the Sorenson to open the directory? For what I see it’s conflict of interest about the editorship.

  • ChrisH

    Astroturfing in American English is a neologism for formal public relations campaigns in politics and advertising which seek to create the impression of being spontaneous, grassroots behavior, hence the reference to the artificial grass AstroTurf.”

    http://en.wikipedia.org/wiki/Astroturfing

  • Paotie

    White Ghost ..

    You said, “Why would he have pushed all of us to sign the petition against the Sorenson to open the directory?”

    Exactly. Sorenson is Sprint’s competition, yes?

    Hmm .. I wonder if Sorenson would be interested in all these proceedings.

    :o)

    Paotie

  • candysblog

    DR is astrosurfing, no question about it! they are not only sponsoring but also dictates to DR how their aggregator should be run and they benefit LOTs from sprint. FCC would be very interested in something like this. Let’s not waste our time bickering. we know that many complaints have already been filed, let us just wait for FCC to make their decision. Me thinks DR did to Rachel for something they (DR) have committed.

  • candysblog

    What’s more, anyone that knows someone who works for Sprint know how they operate. You don’t get something from Sprint for nothing. that’s their M.O.

  • deafchipmunk

    DP,

    I am very impressed with your work!

    Ignore people’s negative responses against you. They are in a state of panic! They would do anything to belittle your excellent work and research.

    Overall Deafread is right.

    People, who attack Deafread Editors, should say apology to editors.

    Deafchip

  • Anonymous

    didn’t Sprint sponsor the recent DeafRead conference in Burlingame this year, Feb. 2?

  • Melissa

    This whole post is such a work of fiction and so full of poorly made inferences that I wouldn’t even know where to begin to respond, but the one thing I will address directly are the accusations that I am the backbone of Cochlear Implant Online. Nothing could be further from the truth. I am very proud to have raised a strong, articulate daughter who feels passionately about a cause and who is willing to speak up for what she believes is important.

  • Candysblog

    Deafchip, Deaf Read has committed the very same act that Rachel did on her blog. If you expect us to apologize to DR, then you’d also then expect DR to apologize to Rachel. Don’t be a blind mice.

  • Rachel

    There is misinformation and clarification that needs to be said:

    “We do not know very much about Melissa herself.”

    To learn more about my mother as a person, you can read this article that she wrote on Cochlear Implant Online – http://cochlearimplantonline.com/index2.php?story

    You will see that my mother has been an incredible mother who took so much effort to raise my sister and me and help my sister and me become who we are today.

    This is incorrect –
    “In high school, she was an editor of her school newspaper.” Please read the blog entry that you enclosed more carefully – http://cochlearimplantonline.com/blog/?p=47 . “I also never expected to be an editor for a school newspaper. It happened by accident. I first joined the school newspaper as a photographer, and one day the editor-in-chief asked me to write an opinion column about an opinion that I had.” – This paragraph is clearly placed after the paragraph where I talk about my being in college and thus, you would see that my being involved with the school newspaper is clearly part of my college experiences.

    “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.” – To say that I was not of age in 2001 and that my mother was involved in establishing CIO is ridiculous because I would not have won the Georgia Technology Fair, a competition that does not allowed parents to be involved, for the best website in 2002. The only thing that my mother helped was providing me articles for my website:

    http://cochlearimplantonline.com/index2.php?story
    http://cochlearimplantonline.com/index2.php?palt
    http://cochlearimplantonline.com/index2.php?witava
    http://cochlearimplantonline.com/index2.php?vestibular

    Evidence that I won the state-wide technology fair for this website is here – http://cochlearimplantonline.com/index2.php?pictures and you can click on the picture to see a larger size – http://cochlearimplantonline.com/images/Trophy%201.jpg

    You will notice that the trophy is dated 2002. So, it’s obvious that this website has been around for a long time.

    Also, you will see in this entry (http://cochlearimplantonline.com/blog/?p=52) that I clearly stated that I learned to build websites by purchasing a book entitled, “How to Build Web Pages for Dummies.” –

    “Then when I was in eighth grade, I saw a few websites designed by teenagers, and I thought, “Wow! I want to do one too!” I also always loved doing graphic design, and I thought I could really use my graphic design abilities to create a website. While I knew how to do graphic design, I didn’t know how to do HTML coding nor how to upload the website to the server. So, I brought a book called “How to Build Web Pages for Dummies” with my own allowance. I just sat and read the book as I was trying to figure out to build a site.”

    You will also see in the same entry about how my mother was involved with the website –

    “So, I designed my web page and then I showed it to my mother. She was thrilled to see it, and I asked her if she had any information to provide people who wanted to learn more about cochlear implants that I could put on my website. She pulled out some of the articles that she had already written for some of the cochlear implant magazines, and I just put them on the site.”

    “There is no way to pinpoint just how active CIO was active before 2006, since like stated previously, the archives only go back to 2006. When one looks through the archives, there is only one entry in the year of 2006.

    Then in the year of 2007 there are only four posts. That brings the total of CIO’s entries prior to joining DeafRead in January 2008, to a grand total of five posts. Now, after joining DeafRead, and before being forcibly inactivated by DeafRead, CIO had one hundred three posts on DeafRead in the span of almost five months. That averages to seventeen posts per month.”

    While I have been blogging on regular basis only since beginning of this year, this website certainly has been active since 2001 since I was providing information to visitors which you can find under these tabs:

    About the CI – http://cochlearimplantonline.com/index2.php?what
    Life – http://cochlearimplantonline.com/index2.php?life
    Auditory – Verbal – http://cochlearimplantonline.com/index2.php?auditory
    Vestibular – http://cochlearimplantonline.com/index2.php?vestibular

    Another perfect example to show that my website was active before 2006 – “http://cochlearimplantonline.com/index2.php?failureblog”

    You would see in this blog entry why I started to blog on regular basis – http://cochlearimplantonline.com/blog/?p=52
    “Then at some point, I saw Jodi’s blog and a few other cochlear implant blogs popping up on DeafRead. I thought, hmmmmm….if their blogs are welcomed on DeafRead, that meant that my website should be on there too! I just thought, “Why not! It’ll be a great way to promote more awareness about cochlear implants and to balance out the negative views on cochlear implants.” When I thought about submitting my website to DeafRead, I asked my mother first if she would be OK with it as I didn’t want to do anything that would make her feel uncomfortable. She told me to go for it. I always loved blogging as I have a travel blog site, but I never got around to installing a blogging script on this site. So, I thought, if my website was going to be on DeafRead, I’D BETTER install the script and commit myself to blogging whenever I could to spread my voice and let those people know that I AM HAPPY with my life and to tell them NOT to tell my parents that they did not raise me well. So, the timing happened to be perfect as I had just come back to school from winter break, and I didn’t have too much work, which meant that I had plenty of time to install the blogging script. Then…I just happened to become addicted to blogging, and that’s how I happened to find myself blogging more frequently than I expected.”

    “While Rachel did disclose that she won this scholarship, she did not make it explicit to the readers that this scholarship was funded by Cochlear Americas.”

    I was very clear that the scholarship was funded by Cochlear by enclosing the link to a page on Cochlear’s website which announces the Graeme Clark Scholarship winners –
    http://cochlearimplantonline.com/blog/?p=5 – “Click here to see Cochlear’s annoucement on the scholarship winners!”

    Also, for your information, my winning the Graeme Clark Scholarship does not make me affiliated with Cochlear Americas. It’s just simply scholarship from a company like these scholarship offers:
    https://www.coca-colascholars.org/cokeWeb/index.jsp
    http://www.wendysclassicachiever.ca/
    http://www.bk.com/companyinfo/community/scholarships.aspx

    How is Cochlear different from these manufacturers who help make a difference in people’s lives? –
    http://www.orthopaedicimplants.com/
    http://www.bulowbiotech.com/
    http://www.depuy.com
    AND this – /www.sprintrelaystore.com/ (Helps deaf to have the ability to communicate with telephones by having better text messaging functionalities. )

    So, why is it a bad thing for Cochlear to have Cochlear Awareness Network as part of their company to HELP people who are suffering from hearing loss? You may not like the fact that some choose not to be part of the deaf culture, but it’s a CHOICE. They can choose to learn ASL and be part of the Deaf culture OR regain their hearing by obtaining a product that enables them to hear.

    I’d suggest you read my entire website, not just my blog. My blog is just one section of my website.

  • Dianrez

    Wow! I am amazed by your detractors after being presented with your carefully cited evidence. I had previously thought they were sincere in their own spheres; but this made me wonder.

    Real professionals don’t attack others especially when they have set up a competiting service. Calling in the FCC, my eye! That is so revealing!

  • Shelley Potma

    Dianrez,
    I agree with your comment #20. Quite revealing, indeed.

    Melissa,

    Please note that DP used the term “arguably” in connection to your being the backbone of CIO.

    I mean no offense when I make these statements:

    I can see why DP said you were the backbone of CIO, in light of your always jumping in for Rachel when debates and discussions become heated. At times like those, Rachel is quieter. You are the quintessential mama bear. You even threatened DeafRead with litigation when Rachel got booted out.

    Thus, it COULD be ARGUED (capitalized for emphasis since I cannot use the bold button) that you’re the backbone of CIO.

    Shelley

  • Melissa

    Shelley,

    Your argument is ludicrous and makes me wonder if you have ever been a parent. Show me a good parent who will not speak up for her child regardless of how old that child gets.

    Stay tuned for Rachel’s response as well. She was writing it and should post it shortly.

  • ChrisH

    Missy, you have the right to protect your children from anonymous attacker, so you did good job. I want to say, I am sorry that I was wrong.

  • Debby

    Some of you are confusing 2 DIFFERENT things.

    DeafRead is sponsored by Sprint. It is acceptable to promote your sponsor’s product. That is NOT astroturfing. Deafread has NOTHING to hide.

    On the other hand, what DP suggests that CAN is engaging in is MISLEADING the public by labeling it as a “volunteer group” while it is really being driven by a for-profit company. Companies cannot mislead the public with its marketing campaigns – there is a legal limit.

    2 completely different things.

  • White Ghost

    Debby —

    You did not get the point about the role between the blogger and the editor. (Debby’s comment at 2:50 PM in the second paragraph.)

    Its about the advertisement regarding the DR’s guideline #6.

  • shekaga

    Melissa, a comment of yours made me pause for a second:

    This whole post is such a work of fiction and so full of poorly made inferences that I wouldn’t even know where to begin to respond

    So are you saying that your BLOG is a work of fiction?

  • Melissa

    You know what the worst part of this whole thing is – Here is a young adult who wants to get involved and wants to help others. She even won a Presidential award for over 100 hours of community service in high school. In 8th grade, she got interested in web design and decided to create CI Online to do some good. Yes, I’d set an example, but deciding to act on her own was completely her own idea. Over the years, she’s gotten more and more involved. Becoming a Cochlear Awareness Volunteer was simply an extension of this. She was enthusiastic about it giving her another means for raising awareness about CIs. Then, along comes DeafRead and blog posts like this one that, because they don’t agree with what Rachel has to say, somehow decide that her intentions are malicious, that she somehow manipulated everything to push implants on the unwitting and that she is an accomplice of a mega corporation whose only motive is greed.

    Why can’t you step back and stop coming up with all these crazy theories and see it for what it is, a 21-year-old who is trying to do something good and who has unjustly been accused of intentional malice when nothing could be further from the truth. Wouldn’t it have been far simpler for the DeafRead editors to have treated her like a human being and contacted her with their concerns, giving her a chance to understand their concerns and rectify her blogsite with disclaimers? The sole fault in this whole thing blowing up lies with the DeafRead editors and their handling of this matter.

    Just because we don’t all agree doesn’t mean that any of us are out to cause harm. We are all interested in the well-being of deaf children. Why can’t we start from that assumption and stop assuming that, just because we don’t agree doesn’t mean that those with a differing view are bad, malicious, etc.

  • Melissa

    Shekaga,

    Why even bother posting such an inane comment?

  • Jeffrey

    “I am very proud to have raised a strong, articulate daughter who feels passionately about a cause and who is willing to speak up for what she believes is important.”

    Melissa,

    I love your choice of words:
    Articulate: YOUR values.
    Speak Up: Subliminal?

    Shall we dance?

  • shekaga

    Melissa:

    a. Because you made the comment and I was making a justifiable conclusion- considering DP’s post was about your daughter’s blog.

    b. Look, I understand as a parent, you’re looking out for your daughter’s best interests, but at the same time, there are times when she’ll have to stand on her own and deal with the world. She IS 21 years old and an adult, and you’re not doing her any favors fighting her battles for her. I know MANY deaf adults whose parents stepped in to fight their battles, and guess what? They didn’t do so well once they entered the real world, so it’s time to let Rachel fight her own battles.

  • Melissa

    Jeffrey,

    And are you assuming that being articulate has to mean through spoken language? I know and have worked with quite a few articulate deaf WRITERS.

    From Merriam Webster online:
    articulate: expressing oneself readily, clearly, or effectively

    Nothing about spoken language there…

  • Melissa

    Shekaga,
    Rachel has been fighting this battle quite well herself. However, it has angered many others, which is why they are also speaking up. Whether she was my daughter or not, I’d still be speaking up, but I’m simply involved more personally because I’m her mother.

  • Jeffrey

    It’s in your head, Love….in your head…
    that’s all…

    Thanks for the memories.

  • Melissa

    Shekaga,

    See comment #23 from Rachel. I hadn’t even realized that she’d posted it already.

  • ChrisH

    Shekaga, I agree with you but how about gay who is alone fight his/her own battles?

  • anon

    “…because I’ve been doing volunteer work in New Zealand for Cochlear Corp as part of the Cochlear Awareness Network, Cochlear have offered to replace my implant free of charge, even though it’s out of its warranty period. That’s $22,000 AUD – about $30,000 New Zealand dollars.”

    Looks like someone’s going to booted soon or later.

  • Robyn

    Hi anon,

    It wouldn’t have mattered anyway – as I would have got one free from the NZ govt in any case. But I still can’t profit from that as I can’t sell the thing as it’s in my head. But what you can read from that that is that Cochler stands by their product, and they probably woould have done that for me regardless of whether I volunteered for CAN or otherwise, had I brought it to their attention.

    I’ve challenged Deafread about my blogs on Deafread based on their decision on RAchel, but so far they have read them and I’m still on. Yet I’m not profiting from Cochlear at all. I’ve made that quite clear.
    I’m a volunteer through and through, and there’s no hidden agenda most volunteers do it to help other people.

    Most of the people I talk to in the community are older peple (50+). These people, if they lose their hearing, are not likely to join the Deaf Community or take up sign language, they are wanting help from people who have experienced hearing loss, and want to know they’re not alone, and there is something that could be considered later down the track if they are eligible. If I’ve helped someone in this category, by getting them to see an audiologist because of deteriorating hearing, or to a doctor for a referal to be helped, then my work as a volunteer can be nothing but good.

    I think Deafread knows they have done wrong, but now are making new guidelines up just to split hairs.

    cheers
    Robyn

  • Karen Mayes

    DeafRead could have handled this matter in a more professional way… they could have asked Rachel about her volunteering, explained the guidelines, giving her choices, something like that. Which they didn’t. So they more or less botched the job of booting Rachel off of the DR, without giving her any notice. Wrong or right decision, it does not matter to me… what matters to me is the way DR kicked Rachel off… not very professionally.

    The way I see it… SO WHAT? Why all uproar over it? John Egbert advocates DBC a lot on DR. Joey Baer talked about BB curve. Even DR is sponsored by Sprint/Viable. Etc. I really don’t see the logic of booting Rachel… so what if she is a very strong blogger? So is Carl S., who is a very strong ASL v/blogger. Etc. Even on Jack’s Eye site there are ads for monetary gain.

    AGBell, DBC, NAD, etc… all organizations have sponsors from non-profit and for-profit organziations. I mean, so what? Volunteering is all good…. personal choice. If one wants to volunteer for DBC, great. Volunteer for NAD, great. Volunteer for Red Cross… great. Volunteer at PTA… great. Where in law does it say that volunteering is a crime? Should we disclose our past volunteering ventures? I believe volunteering is more of a personal choice.

    What is the point? I have read all blogs and I still think it is BS.

    Well, DR made the decision and DeafVillage is born, great. More viewpoints and more perspectives to learn from. The sun does not rise nor set on DR only. There are many aggregators to surf. AllDeaf, DCBlog, etc…

    Have a good day. Oh, I will still comment on DR… you can’t get rid of me easily :o)

    *shrug… stepping off of the soapbox.*

  • anon

    Karen writes: “I have read all blogs”

    Obviously not

  • A Deaf Pundit

    Robyn, the point is that you got an implant at the expense of Cochlear, as you said, because you’re part of CAN.

    I honestly don’t think there’s anymore I can say about this. Either people will have issues with the ethics of this entire situation, or they will not.

  • WAD

    Implantgate?

  • Moebius

    Deaf Pundit…

    Just a question to clarify your role in this investigation you undertook…

    How did you decide to undertake this investigation? Did anyone from DeafRead ask you to do it, or did you take the initiative on your own to do this?

  • A Deaf Pundit

    I took the initiative to do this. DeafRead did not ask me to do this.

  • Li-Li's Mom

    DP, you know I’m a fan of yours, and I’ve gone toe to toe with some of the commenters on Rachel’s site in the past when I’ve thought that bilingual methodologies were being dismissed out of hand based on misconceptions and closed-mindedness, or certain principles were being treated without respect, but I disagree strongly on this issue and think that Rachel was singled out to be removed without warning based on inaccurate information and an inconsistently applied and very vague set of guidelines about what affiliations are bad and which are OK. I think it boils down to the fact that she is actively promoting CIs and AVT (not a product, but a philosophy about approaching deafness), and that is not acceptable on deafread.

    I’m often not comfortable with the approach, and I can see how the topics addressed on the site are not suited to everyone’s taste, but Rachel has always been above-board about developing her site partly as a document of personal experience and partly to promote awareness about and provide a resource of information about cochlear implants. I don’t see how anything she has done violates the letter of deafread’s guidelines or even the spirit of those guidelines.

    Let’s say I found out that Aidan Mack was affiliated with DBC, but hadn’t posted a disclaimer on her blog listing her employment history and affiliations — I wouldn’t consider that any v/blog entry mentioning her own use of ASL or promoting ASL for children on her site was in conflict with deafread’s guidelines. But if held to the same standard as Rachel’s, Aidan’s site would be gone as well(Amy Cohen Efron’s, and many others as well). But I would disagree with that decision just as emphatically: I would think that her involvement was a natural extension of her passion for the language.

    Rachel’s a successful CI recipient, she’s passionate about it, it’s logical that she would join a non-profit network that talks about the benefits of CIs.

    If this newly and uniquely applied twist on the guidelines (no volunteer affiliations with organizations that deal with industries or topics mentioned in blog entries) is to be enforced equitably and with notice, fine. I would expect to see every blog on deafread post a full disclosure of employment history and volunteer or other affiliations so we can judge potential bias, and a lot of great blogs very unfortunately removed.

    I do have issues with the ethics of this situation. but it’s not Rachel’s ethics that I call into question.

  • Dianrez

    Just a thought; being affiliated with DBC, promoting one’s book or a vlog about deafness, etc. would not violate the standards that we see DeafRead espousing.

    These are grassroots products, originated by deaf people on their own independently of corporations, and nonprofit for the most part. I’d be very surprised if any of these enterprises turned a profit or paid anyone’s mortgage, let alone a battery or an earmold.

    If any of them have acquired corporate sponsors, they would of course be required to disclose it on their blogsites.

    They don’t rank in the same category as Cochlear America, a huge, fast-growing and explosively profitable corporation with very well-developed marketing strategies. Any consumer-focused corporation worth its salt is required to have such tactics in order to survive development costs and to please stockholders.

    As part of the Cochlear America’s volunteer auxiliary, Rachel could stand alone and draw her readership on her own merits and therefore not need DeafRead.

    Perhaps Cochlear America could be persuaded to sponsor Rachel’s DeafVillage aggregator just as Sprint is sponsoring DeafRead.

  • anon

    yeah dianrez! then everyone would know deafvillage is controlled by cochlear america.

  • Ann_C

    “Perhaps Cochlear America could be persuaded to sponsor Rachel’s Deaf Village aggregator just as Sprint is sponsoring DeafRead.”

    How do you know Rachel is sole owner of DV?

    Sheesh, Dianrez, I expected better of you than to make that kind of remark…:(

  • White Ghost

    Well, time will tell….

    Take a nice visit….

    http://unausa.org

    United Nations surely have several non-profit organizations.

    It’s kinda parallel with the CIO/CAN……

  • White Ghost

    here it is:

    http://www.unausa.org

    Sorry….

  • Not affiliated with DR

    Beautifully put, Li-Li’s Mom. Especially the “inconsistently applied” and “very vague” parts. That’s exactly why everybody is going back and forth on this — the ethical question itself, imo, is just a red herring.

    My job, for years, dealt specifically with ethics and rule-making… and from my own experience of working with hundreds of attorneys, I can reasonably infer that the DR editors really did not fully understand the underlying principles (and their full complexity) when they first created the rules. If they did, the rules would have been worded differently, *and* applied much more consistently. Even if their ultimate decision was the “correct” one, it is still imperfect and erroneous.

  • A Deaf Pundit

    This isn’t directly related to the CI controversy, but it’s apparent to me that many here do not understand the ramifications of this.

    Perhaps this will help give some a better insight.

    http://tinyurl.com/4cgdat

  • Candysblog

    Too much ASSumptions going on here, it’s no wonder there’s so much falsehood going on here in DR!

    There isn’t anything wrong with a company sponsoring an aggregator just as much as there’s nothing wrong with a company sponsoring a blog! Commercialism isn’t about that. Tayler and Jared twisted around the REAL meaning of commercialism. If a blog is totally about commercialism, it is a turn off for many aggregators. Rachel’s blog wasn’t commercialism. And RAchel’s blog isn’t sponsored by any company (as far as I could tell.) Because if she was sponsored, she’d have to report it. IS DR reporting the value of sponsorship they are getting from Sprint? lol I’d be very interested in that.

    But, when you have an aggregator that discriminates and becomes unethical, then the company that sponsors that aggregator runs the risk of being guilty by association. The company (in this case Sprint) should be afraid if DR starts discriminating because it would reflect badly on them. And there is a rule in FCC that pertains to what is really going on in DR which is in violation of FCC. I’m not gonna get into it. Look around, you’ll be surprised.

    Of course all this has nothing to do with Rachel.

    Let’s stop ASSuming things here. That is unless you don’t mind making an _ _ _ out of yourself.

    And the ramification of the link above has nothing to do with what’s going on with Rachel.

    DP, why don’t you spit it out and state what did Rachel do wrong? In two or three sentence.

    There was no quid pro quo in her case at all. Unless you have direct proof that she gained something and/or that she was directed by CAN to promote Cochlear of Americas. (And suppose that she did, that still does not indicate commercialism.) What I’m seeing is a “witch hunt” by Tayler and his saying he supported CI blog is “whoopie dee doo” because he was under pressure to do something about Rachel and Rachel alone.

    Perhaps you should start looking at all sides instead of just focusing on one.

    And finally it still does not change the fact that Tayler and Jared would probably have gotten more factual information had they personally talked to Rachel.

    You’re looking at something that isn’t there. (assumptions) And that doesn’t pass any muster in court and you know it.

  • A Deaf Pundit

    Candy, I suspect that Cochlear Implant Online, as part of the CAN program, is engaging in stealth marketing.

    And how do you know this wouldn’t stand up in court? Are you an attorney?

  • Candysblog

    Ok. you suspect.

    No, I’m not an attorney, but, I do read up a lot on legal stuffs. Doesn’t make me an expert as much as it makes you one by doing a three post research that ends up with “suspect.”

  • observer

    Candy, your comment is riddled with assumptions as well. Another case of the pot calling the kettle black. The last 4 passages in your comment are especially full of ’em.

  • Candysblog

    [“stealth marketing.” That practice, where people are paid to use or pitch products in public settings without disclosing the fact that they are being paid to do so]

    DP, do you have proof that Rachel is being paid to pitch products? Until you or DR has proof, you guys have no business going on a witch hunt.

    Rachel has disclosed that she is a volunteer for CAN and that she does not get compensated. Getting a scholarship is not the same as getting “paid.” or being “compensated.” I mean, we can go on and on. Be nice if an attorney can clarify some things here. But, as far as I can tell, Rachel did nothing wrong here.

  • White Ghost

    DP

    How would you know *if* the Cochlear Implant Online as part of the CAN program which is engaging in stealth marketing?

    As recent post I made in about the United Nations and their non-profit organizations.

    It’s kind of parallel with the Cochlear Implant Organization (CIO) via Cochlear Americas and other corporations.

    That is how it works.

  • A Deaf Pundit

    White Ghost,

    I don’t know for a fact that they are engaging in stealth marketing. I don’t even know for a fact whether CIO is part of the CAN program – nobody’s confirmed or denied that. But when you look at all of the things that I have presented here in my blog, these facts lead me to suspect that CIO is engaging in stealth marketing, and CAN in turn, being owned by Cochlear, is engaging in astroturfing.

    I cannot say that I know for a fact that CIO is engaging in stealth marketing or that CAN is engaging in astroturfing, because I am not an attorney, therefore, I cannot interpret laws. If I did that, I could possibly be charged with Unlawful Practice of Law [UPL].

    http://en.wikipedia.org/wiki/Practice_of_law

    I’m catching up on comments, so I will look at the United Nations example you cited, then get back to you on that.

  • Candysblog

    Ok, now you say you don’t know for a fact…but you are saying all the information “leads you to suspect.”

    That is a very dangerous thing to do in a deaf world, writing a three page post that gives everyone the idea that there’s something there when really in fact, you don’t know for a fact.

    OH boy, you have a lot to learn about the deaf world.

    I wouldn’t go around doing something like this but if you were to, you could have stated that clearly (in the beginning) that you do not know for a fact and everything you wrote is still “investigative” and in no way implicates Rachel and in no way makes DR’s action right. It still does not at this point. Even you kind of agreed to that because you don’t know for a fact. But that was not the message you started out with. You made a statement about how “it left you standing staggered.” Ok, I’m gonna hope that the majority of deaf people are smart enough to understand that you are just grabbing straws at this point.

    I’m done.

  • A Deaf Pundit

    Okay. From my understanding about the United Nations situation, and my own experience with nonprofits, I think this situation is different. I could be wrong though.

    In my opinion, this is about sponsorship, which is different than this situation. Does United Nations own these organizations? I don’t think they do. The UN works together with the nonprofits, and make that very clear.

    And in my experience with volunteering and studying nonprofits – (see my about page for my major) – for instance, when a nonprofit organization has an event they often need donors to help fund that event.

    So when they get donated money, in return, the nonprofit puts up a sign or a table that says: Thank you X, for your sponsorship!

    The same thing is true for media venues. If you look at broadcasting, one main source of funding for television shows are the commercials. These commercials are clearly marked as advertisements. If people don’t like that television show, what do they do? They call the advertisers and demand they pull their ads.

    It is about transparency.

  • A Deaf Pundit

    Candy, there are facts in my blog. I have clearly cited them. Click on the links to see for yourself.

    These facts have led me to a conclusion, but only the legal system can say my conclusion is factual or not.

    BTW – your comments keep getting trapped in the spam filter. So that is why your comments are delayed in showing up.

  • White Ghost

    Well, that is what the DR Editors are in the difficult positions to understand the procedures between the for-profit and non-profit organizations, plus the scholarships and volunteerism. I don’t think that they fully understand how the procedures work.

  • A Deaf Pundit

    I have deleted Paotie’s latest comment, which was a clear attempt to provoke me and hijack this blog.

    I have also taken the step of banning him from my blog. Personal attacks and hijacking this blog will not be tolerated.

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