IFHOH Day Three, Part II

Day three-- part II

The first workshop we attended Friday was called Accessibility Awareness Collaboration and Hard-of-Hearing People given by Sami Virtanen from the Finnish Federation of Hard-of-Hearing People. Like the the real-time text workshop, I found it exceedingly difficult to pay attention. Tired of reading CART, and feeling full from the large lunch I nearly fell asleep. The late night, early morning routine was catching up with me. Virtanen spoke mainly about Finnish policies, especially with regard to required captioned television programming. The US has had that since 1990. I think the information presented was probably more useful to those in the political arena of policy change, because several representatives from HLAA, CHHA and various other HH/deaf organizations around the world stood up to comment.

I wanted to leave then, but Creating Consumer Awareness through Policy Change turned out to be a surprise. Sherri Collins was a firecracker from Arizona. After waking us all up by handing out prizes she detailed her personal hearing history, and drew a thought-provoking analogy between independence and accessibility. It was US Independence Day. I had forgotten.

Next, Sherri expanded on events leading up to a policy change requiring Arizona audiologists and hearing aid dispensers to provide information about the benefits of telecoils to consumers. Telecoils seemed to be a recurring theme at IFHOH.

Following her presentation, a few people commented they felt a law seemed unreasonably harsh. A man from Michigan spoke about how pressure had been placed on an airport to loop it without resorting to policy change. A woman from New Zealand detailed a sad story about an HH/deaf American tourist who was hit by a passenger train when he got off at the wrong stop after failing to hear an announcement. All NZ trains were looped for telecoil after that. Sadly, she said, it took a death to change policy.

One man remarked that telecoils should be called "accessibility coils" or a-coils since they were used for much, much more than the telephone. Discussion ensued about telecoil vs infrared and privacy concerns in courtrooms, federal buildings and other sensitive areas, since people with telecoils can sometimes hear outside looped rooms with the doors closed. Others protested that hearing aid manufacturers were making smaller, more attractive aids for the Baby-boom generation, dropping t-coil in the process. Two more concerns were voiced:

1) Policy to require telecoil induction loops in public buildings could become obsolete within a few years if hearing aid manufacturers stopped making hearing aids with telecoil capability.

2) Hearing aid manufacturers should be encouraged to include telecoil capability in their newer models because of the many, many benefits.

The final workshop of the day was Experience Working for and With Those With Meniere: A Non-Medical Perspective I attended this one mainly for my husband who was diagnosed with Menieres about six years ago. Dr. Henk de Graaf from the Netherlands reported on the results of a twenty-five year study of Menieres patients in his country. Then he led a discussion of alternative treatments for Meneires. One woman had some success with a chiropractic procedure where the feet were adjusted. Several people mentioned using vitamins, exercise, acupuncture, eating certain foods, not eating certain foods, reducing stress, yoga, marijuana-- you name it. Someone else mentioned the Meniett device. Hoping to discover something new I could share with my husband, I came away feeling deflated. No one knows of a cure.

That night Lorne went to a football game. In the mood for something ethnic, Kate, Ann and I sniffed our way up Davie Street, and found a little Mongolian Grill.


IFHOH Day Three, Part I
IFHOH Day Two
International Federation of Hard of Hearing Congress -- Part 1

Learning the Deaf Way of Life

Not long ago in a recent post (The Blame Game) I mentioned the need for Deaf support to help the late-deafened transition into deafness. My article focused mainly on the difficulties of learning ASL in a hearing environment, but there are a number of ways a Deaf person could support late-deafened people through the transition of learning to live with deafness.


Wendy beautifully described some new situations she's dealing with now that she can no longer hear at all. How do you use a TTY? Where is the best place to put a flashing fire alarm? How can it be hooked up to notify you all over the house?

It might sound odd to some of you, but growing up hearing I was never exposed to any of this Deaf stuff. I didn't know phones with text and blinking lamps, and shaking bed alarms existed. My entire family is hearing and all my friends used to be hearing. I was the first hard-of-hearing-going-deaf person I ever knew. When my hearing loss first began there was no internet, and there was no SHHH or ALDA in my area. My audiologist didn't think to tell me how to negotiate every day living, such as what to do if you can't hear your own fire alarm.


You would think an audiologist would offer some daily living support to a newly late-deafened person besides just hearing aids and/or cochlear implants, but in this regard audiologists are clueless. For example, at my last audiology appointment my audie pointed to my Sidekick and asked, "What's that?" She had never seen one before. When I explained what I could do with it, she was amazed. I too was amazed-- at her ignorance in this matter. Surely I wasn't the only patient she's ever had who couldn't use a cell phone? Audiology clinics focus on helping people hear, NOT on all the accommodations deaf people can use when they CAN'T hear. It's a void that needs to be filled, for sure, but who should fill it?

Everyone-- both hearing and deaf-- seem to think it's the OTHER group's responsibility to help us adjust. So by and large there's no support for the late-deafened, except other late-deafened people, who are mostly learning as they go.

Gosh-- it would be so great if a Deaf veteran took my hand and said-- "This is how to do it!" I'm still trying to figure out the Video Phone I got from Sprint months ago. The problem is it was linked to a computer that died and everything's been wonky since. I'm not sure what to do, so I haven't used it in months. I'd love to use it to practice ASL with a few people I know. To be perfectly honest I'm still totally confused about all the different phone options for deaf people and how they work. It's mind-boggling.

It wasn't until I found SHHH (now HLAA) I learned a few things-- about Harris Catalog, FM systems, my deaf rights and pocket talkers. I found them on my own twenty years after I started losing my hearing. Turned out there's a wonderful support center for the Deaf/deaf/Hard-of-hearing in Seattle, but I hadn't heard about them either. Through HLAA I found another group, the SWC, which is on-line. I can't tell you how important their support has been to me. But my point is, I merely stumbled onto both these organizations twenty years AFTER losing my hearing. No one was there to help me cope for twenty years.


Whose responsibility is it to support deaf/Deaf/HH people?? Other deaf/Deaf/HH people. We would be much more powerful and effective as a community working together. Maybe it's time to recognize none of us has the right answer for everyone. Maybe it would be better if we just reached out to those confused hearing parents of Deaf children and newly late-deafened people and said, "This is what works for ME, but there are other ways too."

We're all in this together.