Sunday, May 4, 2008

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.

14 comments:

Karen Mayes said...

Nice blog...thank you for continuing to educate us about late deafened adults.

Anonymous said...

It would be nice to have a representative of the deaf community working with the audiologists clinics to help those who suddenly, or slowly are losing all their hearing.

Someone to say - hey - this is awful what you're going through, but here are some things to think about...

Would certainly make one not feel so lonely as they go down the path towards total deafness!

cheers
Robyn

Karen Mayes said...

Hey, check out MM's blog... his lates posting as a response to your posting. It is good and nice.

I am thinking... my son who started losing his hearing after he turned 2 years old (progressive hearing loss) and he is more or less used to it, at the age of 11 years old. Of course he still cherishes his hearing aids, which is fine by me. But I am sure it is a whole different ball game for OLDER people who lose hearing due to aging, medicine's side effects, etc. I can only imagine the frustration, fear, helplessness, etc. they might feel...

Deb Ann and Hannah said...

This is very informative post for everyone. Thank you, Kim for standing and educating us about deafening. I feel more connected to you and my friend, Natastha because of your posts. I'm wondering if you could set a new group for deafening people in your local area. You all could get together at bowling, coffee, and other places once a month or two times a month? Maybe I could ask my friend to see if we can get it started in our area.

deafk said...

This is well-educated informative message! I appreciate your sharing your experiences with us. Twenty years, that is something that is not right.

Looks like we need to work closely with audiologists, too.

Thanks again, deafk

Abbie said...

I love reading this because I know exactly how you felt! You would think since I was deaf since I was a lil tyke I would have known about these things.

Nope!

The only thing I knew about was the light flasher to wake me up and the hearing aid socks. No one ever told me about all the other gadgets and gizmos available! It wasn't until I lost my hearing that I discovered captel phones, smoke alarms, flashing doorbells, baby monitors.

David said...

It was a whole new world for me, and quickly I tried to learn what I could to survive. I sought out ASL DVD's, classes in speech reading, products to assist me in knowing if the door bell rang. I discovered guide dogs by accident.
Nice Post and thanks

Candy said...

Audiologist don't know jack about deaf anything. It's as if they're in another world. What are the required courses for one to take to be an audiologist? I'd think, more awareness about deaf people.

Kim said...

Hey Karen :-) Thannks.

Robyn-- I totally agree. HLAA or ALDA needs to develop an outreach committee of some sort so that we're visiting audiologists' offices, doing workshops for the newly deafened and what not. At the very least it would have been nice for my audiologist to point me towards HLAA and the Deafness Cntr. we have here in Seattle.

Kim said...

Hi Again Karen-- Thanks for giving me the heads up about MM's blog. I'll have to look at it later, as I only have a few minutes here. You've mentioned your son before. I do not think there is a GOOD age to lose your hearing. Once you have heard, it's hard to give it up. I wasn't exactly "old" when my hearing first started to go.

I was only 19 when it was first diagnosed and doctors think I probably started losing it long before that. It wasn't as bad as it is now. The good thing about losing your hearing young and slowly is it helps you to learn lip-reading. But the isolation was horrible.

The bad thing about losing your hearing as an older adult is your brain isn't as malleable. It's harder to pick up lip-reading and adjust. Sometimes people suffere from arthritis and can't learn to ASL very well. However, the upshoot is as you age you meet more people your age who have the same situation.

I think your son will be fine since he's involved with the Deaf community.

Kim said...

Deb Ann! I meet with late-deafened people whenever I can. HLAA is much more active in my area now and we've started an ALDA group though it's about an hour away. One reason I blog is to help others find help and understanding on-line.

Yeah-- DeafK, twenty years IS a long time. . . I wanted to learn ASL during that time too, and took a couple classes but was told by HEARING teachers not to bother trying to mix with Deaf people because they weren't interested in socializing with HH/deaf. This is why I feel the Deaf need to reach out a little more.

Do you agree with MM's blog? Do you think we can't understand each other? I've met some real NICE Deaf people. In here and in the Seattle area. :-)

Kim said...

Abbie and David, This just proves that many late-deafened are still feeling isolated even though HLAA has become more active. (David I know Canada has a counterpart to HLAA, but I can't remember the name-- apologies. . .) I know a couple people with "hearing" dogs-- are you thinking of getting one??

Kim said...

Candy-- That's so true about audiologists. Mine are well-known award winners with their PhD's. They know a LOT about hearing and hearing loss, but nothing about the social adjustments of living with hearing loss or the psychological impact of losing a sense.

Not only that-- but FEW psychologists understand what happens to people when they lose hearing either. This is something that really needs to be addressed.

Support groups are wonderful in that meeting and talking to others experiencing the same thing can really help!! Though I've found that sometimes those who are giving the support have issues themselves. It's not always professional. One person will tell you one thing, another will tell you something else. People can become upset when you vent. Late-deafened often need to vent a little frustration. It's very tricky.

I went to two psychologists and honestly it wasn't all that helpful because they totally ignored my hearing loss in order to focus on other issues THEY felt more comfortable dealing with.

Anonymous said...

It's not just late-deafened adults, but those forced through the oralist path that can be in a similar situation as well. When did I start watching TV with captioning? Not till my mid 30's, after the ADA required TV's to have built in captioning. Been learning the uses of texting, of video relay, even CapTel. Meh.