Wednesday, June 4, 2008

Censorship is Alive and Well

I was horrified to find that this morning, a fellow Cochlear Implantee had been removed from Deafread simply because she was a volunteer for CAN (Cochlear Awareness Network).

So - If I am removed from Deafread after this post, so be it. What Deafread has done to Rachel is abhorrent.

I am a CAN volunteer here in New Zealand.

Like Rachel, I am not paid by Cochlear. My hours are voluntary. My blog has NOTHING to do with the awareness network - it's my own personal blog JUST LIKE RACHEL's.

So let's see what a CAN volunteer is...

From the CAN website itself..

'The Cochlear Awareness Network is a group of Volunteers each of whom have lived deaf but have had their hearing returned through either a Cochlear Implant or a Baha. They have chosen to be members of the Cochlear Awareness Network to tell their stories, raising awareness for these wonderful changes in their lives. All members are available to discuss their experiences.'

From that website you can see my picture - I'm the lady 5th from the left.

So what do I do as a CAN volunteer???

I give talks. I go out into the community and give presentations to community groups such as Probus, Rotary, Grey Power, Lionesses, Womens Business Groups, basically to anyone that wants a speaker. My talks raise awareness of deafness. I tell them how many people in NZ are deaf, and what it is like growing up deaf in New Zealand. I explain what a cochlear implant is, and how it works, in comparison with a conventional hearing aid. I discuss New Zealand's funding issues for these devices. (We don't have private medical insurance cover so we rely on Govt Funding). I give information of who could be eligible for a cochlear implant. Lastly, I tell people my own personal story, and what the cochlear implant has done for me.

When I'm not giving talks, I'm writing letters to MP's and to the Prime Minister on behalf of people on our waiting lists to encourage more funding for adults CI's.

I talk to prospective Cochlear Implantees here in New Zealand too. Again answering any questions they may have, and telling them what the implant is like for ME, emphasing at all times that it will probably different for them.

I occasionally help with research, and also occasionally get called in to talk to trainee audiologists, or trainee speech language therapists.

The most important part of the volunteer position is MY STORY.

My blog has absolutely nothing to do with CAN. Just like Rachels. I blog about what's happening in my life, whether it has something to do with my failed old implant, my frustrations in daily life, my new implant, or my photography. Even the cats I've rescued. But heck it looks like I'll be booted off Deafread now because I'm a CAN volunteer and I didn't disclose it.

But hang on - why should I? Do people have to disclose to Deafread WHO they are employed by? Who they associate with? What clubs they belong to?

Of course not - that's just rubbish.

So let's hear the REAL reason from Deafread, why Rachel got terminated.

OR - do the DECENT thing - reinstate her blog on deafread WITH an apology.

15 comments:

Abbie said...

Amen! She deserves the real reason and not some chewed up and twisted guideline!

Robyn said...

Yeah. This blog of mine still isn't up on Deafread yet....

Valerie said...

It is finally up on frontpage this morning.

Amen sister!

elizabeth said...

Thank you for your support!
-- Elizabeth, CAN volunteer and writer for www.cochlearimplantonline.com (and proud of it!)

Anonymous said...

Robyn,
From an outsider's view, the two blogs are vastly different. Yours has always been about your life and experiences. Yes, that, in a way, is spreading awareness, but you're just a person, sharing her life on your blog. The same is true for almost all CI blogs that I've seen on DeafRead. Rachel's, on the other hand, is nonstop propaganda. Entries titled "Fillintheblank's story" abound. There's very little about her own life and experiences as a person there now. It seems that we are trying to compare apples and oranges here.
Just my 2 cents.

Anonymous said...

Abbie
a lot of us know that she was booted because she insults deaf people on her blog. I'm happy to keep out audists from deafread. There's your real reason.

OCDAC said...

For a few years our agency was funded by the Oberkotter Foundation and Cochlear Americas.

Kim said...

If they boot you off, I know exactly where to find you, my dear. Great post! I'm with you all the way.

Robyn said...

Hi anonymous,

thank you for your comment. The blogs are different, as we're two different people. That Rachel might introduce another person on her blog who hasnm't access to a computer is fine by me. It gives another perspective.

However, the official line is that she was booted off because she was a volunteer by CAN. Well there's plenty here that are volunteers for CAN, AB, and other organisations and they aren't booted off. So she should at least be told the real reason, or be reinstated.

Cheers
Robyn

elizabeth said...

I'd like to respond to what "Anonymous" posted at 1:34AM. Cochlear Implant Online posts stories from other CI users to combat the myth that cochlear implants are a "gamble" or that Rachel's success with her CIs is an exception, not the rule. We hope to show that, with proper counseling beforehand and aural rehabilitation afterward, cochlear implants are a viable option for those who qualify. Also, if you'll read the stories of other CI users we post, you'll see that they represent the diversity within the CI community. Some of the past stories we've posted have included graduates of oral schools, adult CI recipients, CI users who use cued speech, CI users who use ASL, and CI users who were raised with AVT. We hope to show that, whichever method you choose, parental involvement and commitment are key to the success of children who receive cochlear implants. So, actually, your criticism of our site is actually what I consider one of its greatest strengths -- though Rachel was raised with AVT and I am in training to become an AV Therapist, we have purposely sought to include stories from all ends of the CI spectrum on our site. Thank you for allowing me to share that!

Anonymous said...

I curious..as a volunteer for CAN are you paid for speaking at these events? Do you pay your own way and your own expenses? Are you reimbursed in anyway?

Robyn said...

I am not paid for speaking at these events. Occasionally the event manager will give me a cheque as a thank you for speaking, which I in turn donate to The Pindrop Foundation to raise money for Cochlear Implants in New Zealand. They might give me a petrol voucher, and I will gladly use that.

Cochlear will pay any out of pocket expenses, for example, if a talk is a long way out of town, they will pay for a hotel room and a meal, and mileage to get there, but that is all. That covers expenses, but it is still in no way profiteering from it.

I use my own computer, and the event sites equipment.

I get paid in non profit ways - by the enjoyment I get out of meeting new people, in being able to lend a sympathetic ear or empathetic ear to people who are in the situaiton that I once was. In being able to help people find ways of combatting deafness by pointing them in the direction they need to go, whether it be to the local GP for a referral to the Cochlear Implant team, or to an audiologist to get their hearing checked, or even suggesting ALD's to help them cope.

When I travel out of town, I use these 'outings' in combination with my photography to take wonderful landscapes/seascapes of New Zealand in places I wouldn't otherwise get to.

I really enjoy being a volunteer.

Cheers
Robyn

David said...

Great post, and thank you for doing this. I am so behind you!
David

Liz said...

I went to the CAN website. It looks so encouraging. Best wishes to you as you work to help others find the JOY you have found with your implant! You go girl!!
:D Liz

Anonymous said...

American CAN members receive points towards free supplies and other little incentives to create user groups; blogs and speak.