Tuesday, June 03, 2008

Deafread, you want full disclosure?!

Well, this afternoon I got a little surprise in my email from a fellow blogger name Rachel Chaikof of Cochlear Implant Online informing 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 the policy (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!).

Then Tayler,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 volunteers who 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


42 comments:

Jennifer said...

AMEN, sister!!!

Valerie said...

Thank you for your full disclosure. I appreciate you telling me your involvement with all the organizations.

A cochlear implant is a very personal choice and a lifetime choice. We back our brand and company 100%. Like me, I would assist anyone interested in CIs. I believe that as CI users we have a responsiblity to disclose the pros and cons.

You pulled at my heart with your comment on why we write our blogs. It is from our hearts. The only profit we get is a heartfelt comment and a smile from putting those words on the computer.

Rachel has my support not because she wears CIs, but because she is a person. I respect her right to blog and respect her right to support her CI brand. I don't support Deafread removing her from the site.

My full disclosure, my name is Valerie and I support laughing, dancing, music, friendship and family.

Abbie - you rock

elizabeth said...

Love it! Thank you for your support!

I loved what you said about volunteering, too! As a member of CAN, I could care less what brand prospective CI recipients choose -- I just feel honored to walk with people on their "hearing journey". It's a cool process to watch it all unfold!

Keep on blogging!

Candy said...

Go! Abbie Go!

Kim said...

You sell Girl Scout Cookies?? OMG! Do you have any Samoas? My favorites!! hahaha! Great post!!

Ann_C said...

You tell like it is, girrrrl! Great article.

Samoas? My hubby loves those!

Mike McConnell said...

Ha. Great post! Trope of all trope? Heh. What better way to vulgarize a word by introducing it to the masses for them to learn a new word in your blog?

My plan is working flawlessly!
*rubbing hands* heh heh......

Seriously, you did great on your full disclosure. Although selling Girl Scouts cookies they might hold you to that and object.

Jodi Cutler Del Dottore said...

Ho-Ly Shit. THAT was really good. Jodi

Der Sankt said...

Yep...that was a really good one. Wow.

That's just really good.

-Der Sankt

Anonymous said...

It's the F***ing, sHit, Best Blog ever I read! You nailed it.

Tayler will get the low blow in a big time.

White Ghost

ecantrell said...

Dang!

Abbie said...

Yawn!

*rubbing eyes*

Wow! Thank you everyone! I think this is really a twisted form of anarchy that Tayler is practicing and trying to make an example of out of Rachel... I want proof of this paid volunteer conspiracy that he has cooked up.

Mike,

I'm glad to see you out and about again! I see nothing wrong with injecting a little edumacation into some people :) Too bad its the basic rights that some people lack the knowledge in.

Kim,

HA! Samoas are my favorite too but girl scout cookie season has sadly ended. I realized that I might have opened up a cookie jar with the Girl Scout cookies but I was the cookie queen three years in a row and I better disclose that.

Lane said...

I dig for Thin Mints and Dosidos cookies! One box of those usually last less than two hours by me, the only me. Somebody please advertise them on your blogs.

As far as I read few recent posts and comments, and seeing that Rachel has strong support base...Tayler should explain his move.

I wonder what next month's controversy will be.

Have a good day,
cookie monster.

Sam said...

Dear Abby.....oops, wrong place. But I am glad you got to kick some royal PITA butt!

Valerie said...

Oh I forgot to disclose that I resigned from NEA around 6 years ago, I don't like political agendas with my education. I was also a brownie in the Girl Scouts and in 4-H. I won the district with my wonderful pound cake.

Glad to see you fired up! Don't work so hard. Going to sign for that house and put myself back in debt. Going to take pics if I can find my camera, darn that packing.

Lane said...

That was for my previous comment in here, I realized Tayler already explained his move...just read his post under DeafRead Editors blog.

Whether someone is being paid or working as a volunteer for any companies on their entries or blogs (Rachel might not have)....DR editors trying to restrict them wouldn't work in a very small community like ours...if that's still a case, many of us shouldn't be here at all. Number of DR readers will decline.

I'm not sure if I'm making sense here, please pretend and say I did.

Laurie said...

Oh boy. . . DeafRead should never underestimate the power of the blogging world! I guess I should give my full disclosure, too!

Well said, Abbie! See you soon!

Laurie

Paula Rosenthal said...

Amy Cohn Efron, Jamie Berke and tons of others all have affiliations, commercial or otherwise... where's their disclosure or renunciation? Give me a break, DeafRead is ruled at whim by "human" editors. They're just a biased aggregator and nothing more.

The Royers said...

hey do you accept visa for those girl scout cookies? im hungry.

OCDAC said...

We were funded by Oberkotter Foundation and Cochlear Americas for a while. I didnt have to disclose that. Now the HMF foundation wants me to set up a "sign language institute" in here and another country that teaches deaf people to speak.

David said...

You rock Abbie!
I like you write my blog from my heart. It provides nothing for me other than a sense of maybe I can help someone who is like me.
I should disclose that I am a member of the "Green Party", our environmental political party that grows in numbers daily.
Thanks for this post!

Li-Li's Mom said...

GREAT POST, ABBIE!!!

Well ... I for one am shocked ... shocked to find out that not only is Rachel pro-CI, but worse, she is a card-carrying volunteer with an interest in promoting awareness of cochlear implants and now I've found that she writes about cochlear implants IN HER BLOG!!!!

Good thing I'm not on deafread: I get a salary from a university, and I've written about my daughter's education (I know, total conflict of interest). I'd be banned, right? And another thing, I write a gorgeous, brilliant, profoundly deaf child on my blog, how she both signs and speaks beautifully -- AND SHE'S MY OWN DAUGHTER. I should have disclosed the connection, and feel just awful about that.

Uh oh, I've contributed money to and have joined NAD, which probably invalidates my ability to write objectively about ASL and bilingual learning. On that note, based on the reasoning -- if we could call it that -- for booting Rachel's site, are all deafread bloggers required to disclose on their blogs whether or not they are members of NAD before writing about deaf-related issues? Given that there's apparently no warning to disclose before the axe hits, are 80% of the blogs getting their notices today?

Abbie said...

Life according to Tayler if I hypothetically volunteer for the Red Cross which are known to pay their volunteers for their services provided and I link their site within an entry to donate without disclosing I'm a paid volunteer? According to Tayler that is not against DeafReads guidelines because it falls under the "not-for-profit" organization.

Uh-huh.

Lets say if I had the Dave Thomas Foundation for Adoption approach me about holding a "for-profit" donation fundraiser on my blog and they will compensate me by paying me for advertising it and I chose not disclose it. This is against the guidelines. However, because Dave Thomas Foundation for Adoption is associated with WENDY's fast-food restaurants which is a for-profit corporation! Now, this is against DeafReads guidelines!

Grasping at straws are we?

Then I happened to read Taylor's blog comments here:

It’s DeafRead’s job to ensure influence by corporate ties are minimized. Publishing Rachel’s blog in good faith has blew up in our faces because we are ultimately responsible — and now that this has occurred, we have to clean up after and hope to restore the DeafRead audience’s trust in us.

Now this is conflicting with their Guidelines/Disclaimer:

Ultimately, we at DeafRead assume ZERO RESPONSIBILITY for any content posted at DeafRead regardless of whether it meets the guidelines above or not. Each blogger is solely responsible for the content posted on his/her website.

Gee, this is kind of conflicting, wouldn't you say? Which one is it? Are they or aren't they responsible for the content?

Mike McConnell said...

Paranoia is their own worse enemy.

Tayler is making things up as he go along since it continues to blow up in his face. And that editors are the lemmings willing to follow others before them off of a cliff? Maybe DR need to simply not accept Sprint's sponsorship since Tayler keeps coming up with this "ethical" nonsense spiel about ensuring that such "influence by corporate ties are minimized."

What?

Sprint doesn't want competition?

Hey, son, it sure does sound like Sprint is doing a lot of influencin' around here.

Maybe it's time that Tayler "minimize" his own corporate ties? Wouldn't that be the most ethical thing to do around here rather than to do these constant projections about how other bloggers are "unethical" in what they do for not disclosing that they have done unpaid volunteer work?

Friggin' unreal.

Val said...

did a little research myself:
http://deafkidscanhear.blogspot.com/2008/04/health-fair.html that is where I blogged about going to a Cochlear event ( a health fair ) and there are Cochlear signs all around me. It was on the extras at deafread but I didn't get booted

Claudia said...

You.
Go.
Girl.

You are fucking FIERCE!

Abbie said...

I'm going to try this again after since I had my cup of coffee :)
This is a good reading from a law student, check out Anonymous Deaf Law Student blog.

It pains me to say this, but I am leaving DeafRead. I orginially joined Deafread hoping that I could present an unique point of view and encourage aspiring d/Deaf law students. However, these hopes become moot when DeafRead espouses a discriminatory and Deaf-centric policy by banning a certain blog.

Paotie said...

Abbie ..

An announcement will be made today at my blog.

Stay tuned ..

:o)

Paotie

Seek Geo said...

Hi Abbie!

As I promised that I am going to take a lot of rest from blogging this week but I feel the need to say something on here. Just wanted to let you know that I'm with you all the way and you all have my support. I do have my own side of story being frustrated with DR so you are not alone.

What happened is that I was questioning why several of my posts went into extra page even though a couple of them were deaf-related but I don't mind because these has received several votes which then would have been moved into front page.

But did it happen? NOPE! So I emailed them asking why and I was told that all of these posts with high votes of mine were abused, I was like WHAT?! So, they are accusing the Seekies being abusive while some other posts by other b/vloggers get to move to front page?!

So, ya I am so frustrated and I did ask them to remove mine and explained my reasons but it hasn't been taken care of for days and guess what? My last post of "Hello Seekies: SG Corner" received like 6 votes and yet it was never moved. *sighs*

It gets old.

-SG

Cyborg Queen said...

You go Abbie! Like I said in my blog, it just doesn't make sense why our blogs that we worked so hard for to put our creative juices together to be dissected apart. It just plainly sucks.

Kim said...

I posted a blog last night that hasn't shown up in DeafRead.

http://djembeslappin.blogspot.com/

Abbie said...

Claudia,

You craaaaaaaaaack me up! I had pictures of Project Runway in my head after I read the word fierce... You are a rockstar! :)

Paotie,

I'm totally waiting on it!

SeekGeo,

I can't believe they haven't removed your blog yet after you asked them! There has been so many bloggers that have requested to be removed yesterday and it was done in a snap!

I smell something fishy...

Cyborg Queen,

It is NOT fair! I agree with you 100% It's bullsh!t and I'm allergic to it. :)

Abbie said...

Kim,

I wonder if the editors are sleeping or something.

I just checked, after 11 hours you were finally put on there! I don't know about you but I can get a lot done in 11 hours...

Shari said...

You go, girl.

BTW, sorry about the temporary "leave of absence." I needed to simplify my life and tweak the blog a bit. Gave the kids screen names. Deleted another blog I had. I feel better. :)

Anonymous said...

Who is DeafRead??


mwahh ha ha ha ha

Diane J Standiford said...

Great comeback to true stupidity. Such insanity. BLOG ON!

*Tasha* said...

Abbie,

Thanks for the reassurement. You're right- most of the people are sick thinking about me getting a "hole drilled in my head"- especially since I point out it's a hole drilled in my head, hehe. I guess I get a perverse pleasure out of thinking that.. well, they're DRILLING in my head. I guess the science aspect of it fascinates me... it IS crazy to think of though! I think I'm kind of distancing myself from the whole "I am getting SURGERY!!" thing. It still doesn't seem REAL.

Also, huh. SO how did your mom end up telling you it made her sick? Did she just casually mention it like, "Well, I'm glad you got this but I hafta tell you...!"?

And how should I respond to people's replies on my posts? Should I respond on their blogs or should I respond AFTER their comments on the posts? I'm not sure if it tells the person I replied or not. :)

Also? I would LOVE to buy some of those Mint cookies from you! Especially since I never really see girl scouts here. It seems as though they only sell those cookies twice a year around here! *wink* Haha.

Good post- very thought-provoking. I hope deafread reads this or at least sees all the uproar this has caused and reconsiders what they post and don't post. OF COURSE we're all loyal to our brands for the most part. They made us hear!!! So as for being a "paid volunteer" or just being someone with a CI- it shouldn't matter as long as they tell it as it is.

Loudest Mom said...

Abbie-

Awesome post!

Dyniece said...

I asked Tayler the same question - are we all now required to disclose all our affiliations - even if we get no monetary benefit from them? If so that's totally ridiculous, and its simply wrong of them to have pulled Rachel's blog without even giving her the benefit of discussion with them about it. Talk about a police state.

Yana said...

You are awesome! :)

Abbie said...

Deafread is really making no sense. On Friday morning, I posted a blog promoting the NJ ASL Exposition on the 28th and they put me in the extra.

Why?!

I emailed single one of the editors early Saturday morning and I have not received a response from any of them nor I have I been moved to the front page. I have accumulated more then 5 votes too!

It is a moot point now since the expo is over but I just sent Tayler another email inquiring why such a post promoting an ASL event would be placed on the Extra page.

Maybe I should have disclosed that Sprint was one of the vendors there?

Billy Koch said...

DR is just DR - moderating what they want to see on their site. Honestly after reading this - I have clicked for my last time to DR. They won't get my support anymore - it is hypocrital on what they did to Rachel. Also what they also forget is that some non-profit operate in a for-profit way. I know of a few that does that. So simple answer is just to walk away and don't click on them. Once people stop clicking on their website and Sprint sees the loss of traffic from DR - then the result = loss of sponsorship for their site. What goes around comes around!