What HAL does for the hearing handicapped

[Juanita462]

thanks for the link Etoile - checked it out and Bell seems to be headquartered back East. Will call them and see what the service

is for the West Coast.

 

Do you think the TTY phone would work for business type calls?

Wouldn't the person answering become impatient with the time

lag caused by the typing etc.?

 

I will have to go to our HOH forum and let them know about Bell

as they are all under the impression that relay service is not

available here in Canada.

 

Thanks again for the great info you have provided here!

[Golfette]

Dave, you're absolutely right. We HOH are afraid to admit our disability and don't ask for what we need. We're afraid for our jobs, for what people will think of us if they know we're HOH. We're alone and isolated and have no voice. Only in numbers do we have a voice.

 

From 1990 to 2000, I volunteered for the Hearing Loss Association of America (formerly SHHH - Self Help for Hard of Hearing). We had chapters in nearly all states. I went to 5 national conventions, leadership seminars, ADA seminars, advocated for the ADA, was regional coordinator for the L.A. area, edited and published a newsletter for nearly 275 HOH in the L.A. & Orange County area and along with my dear compatriots advocated for HOH rights. I finally left in 2000, when we moved away and found we had accomplished nothing. Things were still as they are today, 8 years later. The needs of the HOH are still confused with those of the deaf. If you need assistance because you are HOH, you are still offered a sign language interpreter even though none of us have ever used or learned sign language. The reason is that HOH people as a group will not come forth and advocate. The deaf have a whole slew of professional help, from sign language interpreters to those who teach in schools for the deaf whose livelihood depends on the deaf. That is a lot of professional people depending on the deaf remaining deaf. The HOH have very little professional assistance - possibly real time captioners and hearing aid dealers. That's about it. Try going to your HMO and getting assistance with your hearing loss in dealing with your doctors. You'll get the offer of a sign language interpreter.

 

What is the answer? I haven't a clue. Somehow, I don't think masses of HOH people are going to gather and demand (very courteously of course) a few rights. We're too busy concealing our hearing loss and trying to deal with the world as it is.

 

Forgive my bluntness and I hope I have not offended anyone, but as one who has spent 10 years "fighting in the trenches," I am discouraged.

[Sundagger]

What is the answer? I haven't a clue. Somehow, I don't think masses of HOH people are going to gather and demand (very courteously of course) a few rights. We're too busy concealing our hearing loss and trying to deal with the world as it is.

 

You really said it well. When the majority of people with hearing loss are denying that they have a problem - and frustrating the people in their lives - its hard to see what will make the situation better. There seems to be a stigma attached to hearing loss - that "those people" are old, you have to shout at them, they "don't (can't?) understand what you are saying" and on and on.

 

There is such a spectrum of hearing loss, from those who are just beginning to experience some age-related loss to those who are nearly deaf. Those of us with severe loss who have had to deal with it in our professional and personal lives most or all of our life see the need for recognition of "our" problem. For awhile all the HA development money was going toward "invisible" aids - in the ear, in the canal. Not much was going toward improving the quality of aids powerful enough to allow many of us to continue working at a high level. It's just the past few years that the fully digital aids have become available.

 

The national organizations are only able to nibble around the edges of discrimination. Their membership isn't large enough or affluent enough to have much impact in government. Even belonging to such organizations seems to offend many of those who could most benefit from it. Even in a small place like Santa Fe, there should be more than a dozen people show up at an organizational meeting - one that is always unsuccessful.

 

I started to request cabin equipment from HAL due to a scary experience some years ago. I now make sure that it is installed and working. However - I rarely request the equipment for staying at a hotel. It seems like such a bother, and maybe I'll be shuffled off to an undesirable room for asking. I shouldn't feel that way, but I've become conditioned to viewing accomodation as an imposition. I'm working on changing that, but it's difficult.

[etoile]

thanks for the link Etoile - checked it out and Bell seems to be headquartered back East. Will call them and see what the service

is for the West Coast.

 

Do you think the TTY phone would work for business type calls?

Wouldn't the person answering become impatient with the time

lag caused by the typing etc.?

 

I will have to go to our HOH forum and let them know about Bell

as they are all under the impression that relay service is not

available here in Canada.

 

Thanks again for the great info you have provided here!

Yes, TTY works for any kind of phone call! (You don't need specialized equipment either, you can do it through your computer with NexTalk or even AOL Instant Messenger Relay.) You're right that some people become impatient but they rarely hang up. As a video relay interpreter myself, I have only occasionally had people say "I don't have time for this" or things like that. Sometimes people say "are you still there" and the operator will just say "yes just a moment, the person is still typing" and it's totally fine. Many business have received relay calls before so they have heard of it.

[Golfette]

You really said it well. When the majority of people with hearing loss are denying that they have a problem - and frustrating the people in their lives - its hard to see what will make the situation better. There seems to be a stigma attached to hearing loss - that "those people" are old, you have to shout at them, they "don't (can't?) understand what you are saying" and on and on.

 

There is such a spectrum of hearing loss, from those who are just beginning to experience some age-related loss to those who are nearly deaf. Those of us with severe loss who have had to deal with it in our professional and personal lives most or all of our life see the need for recognition of "our" problem. For awhile all the HA development money was going toward "invisible" aids - in the ear, in the canal. Not much was going toward improving the quality of aids powerful enough to allow many of us to continue working at a high level. It's just the past few years that the fully digital aids have become available.

 

The national organizations are only able to nibble around the edges of discrimination. Their membership isn't large enough or affluent enough to have much impact in government. Even belonging to such organizations seems to offend many of those who could most benefit from it. Even in a small place like Santa Fe, there should be more than a dozen people show up at an organizational meeting - one that is always unsuccessful./quote]

 

You are right, Sundagger, there is a stigma attached to hearing loss. Even though people with hearing loss may be normal in every other way, extremely well educated, successful, attractive, etc., they are often viewed as not quite bright. And that feeling rubs off on the HOH person. It's something you can carry with you all your life, especially if you are born with a hearing loss or become hearing-impaired early in your development.

 

The problem with HLAA, which is the only orgaization which is truly dedicated to people who are hard of hearing and want to remain in the hearing world, is just as Sundagger says. HLAA has suffered from a lack of leadership charisma and new blood at National and in its chapters and groups across the USA. I receive the California State HLAA monthly newsletter, and I see the same old names I recognize from 8 years ago still leading the chapters etc. No new, younger motivated leaders for the HOH world are coming forth.

 

The ADA which was hailed as such a victory when it was enacted some years ago has proved to be a hollow victory at best. It is very sad for all of us, but in many ways we have only ourselves to blame.

[OTRlady]

The national organizations are only able to nibble around the edges of discrimination. Their membership isn't large enough or affluent enough to have much impact in government....I've become conditioned to viewing accomodation as an imposition. I'm working on changing that, but it's difficult.

 

The blind and visually impaired have a couple or three large national organizations, one of which we like to joke "never met a lawsuit they didn't like".;) While we don't agree with a lot of their philosophies, they have had an impact. You could really use an HOH organization with their attitude.

 

For what it's worth, I have a couple observations. In my experience, there are a lot fewer deaf persons than there used to be (apparently medical technology is making some advances.) Since no one can tell that an HOH person is HOH, the hearing world just doesn't notice the assistive needs of the deaf and HOH. At many events, there will be accommodations for people in wheelchairs and the blind, but nothing for the deaf or HOH. You can only combat this by making more noise (no pun intended.)

 

Also, for whatever reason, people fear loss of vision more than loss of hearing. I think this attitude has the unwanted side effect that people also think deafness and hearing loss are less of a disability and therefore don't require any extra attention.

 

Strangely enough, most of the blind people I know say that they would much rather be blind than deaf--which leads to another observation. For many, hearing loss also affects your speech. Either you don't talk much because you can't keep up with the gabble of conversation, or because your hearing loss is long-term or profound, you may speak slowly or indistinctly. Aside from the fact that hearing people misinterpret this as a mental illness or cognitive disability, it makes it MUCH harder for you to advocate and communicate with the hearing community because you start from a much more isolated position. The blind are already a working group. The deaf/HOH are like a million groups of one each. Like it or not, the world is multimedia oriented. Sound and video (which includes sound) is how you get at the rest of us. If you can't talk to people or make your case in a radio or TV commercial, they aren't paying attention. They aren't reading the written material; that's for sure.

 

Last thing I have to say is that a lot of hearing people, if they notice your disability, are afraid of offending you by offering help you don't need. They seem to intuitively know some ways to help a visually impaired or blind person, but they really aren't sure what they can do for a deaf or HOH person. Not being you, I can't say how difficult this would be, but I'm a fan of the direct approach. Stand up and be proud of yourself, disability and all. Be direct and explicit. Take the initiative to introduce yourself as HOH and tell the hearing person what he/she must do to communicate well with you. Being HOH might be a stigma, but eventually, people will find out, and it seems better to me that you tell them what to think before they form the wrong opinions of what HOH means.

 

If someone offers you the wrong help, try to be gracious and either accept (whether you need it or not), or politely explain what you need instead. DH told me once that though he is an excellent traveler and does not need help crossing streets, many blind people never develop these skills and need the help. If he refuses, the prospective helper might attribute his attitude toward all blind people and never offer help to that future person who really needs it. (But I think he mostly accepts because he likes having a pretty girl/woman on his arm. :rolleyes: )

 

It's truly an uphill battle and not for the faint of heart, but don't give up. Small victories still mean something.

 

In the end, we are all people trying to make connections with other people. While we can't understand what it is to be HOH, we can still value you and support you. And to bring this back to the cruise theme, I think the crew on every ship are no different. They want to help, but they do not know how, and they are afraid--perhaps more so for the non-Americans--of offending you. Reach out. You'll be glad you did.

[Sundagger]

Theresa, that was a wonderful post. Many good points worth considering.

 

I've recently gone back to to brief biographies of Helen Keller. She did view deafness as "a greater affliction" than blindness. Something many people would be surprised to hear, as you mention. There are some very encouraging quotes from her:

 

"Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therin to be content"

 

"Self-pity is our worst enemy and if we yield to it, we can never do anything good in the world."

 

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us."

 

Some of us in this thread have discussed via email some of the challenges we face. It is too easy to succumb to a bit of self-pity - its something to be fought constantly, but the battles are wearing on a person.

 

I see that you haven't cruised on HAL yet - it is actually the staff on HAL ships that keeps me coming back. They go out of their way to assist me when they learn of my handicap. So I'll keep putting up with the management foibles (and some of the passengers) to cruise on a line whose staff shows some empathy, not antipathy.

[whiterose]

Theresa, that was a wonderful post - picture me standing up and cheering at my computer. You said it so well. It's up to us to first admit that we need help and then to explain exactly what we need. People with good hearing find it hard to understand why we have so many problems. Some think we should just pay attention!!!!

 

I belong to a generation that was taught not to expect special attention so at first it was hard for me to advocate for myself when on a cruise but then I discovered than when I got the equipment or help I needed I was also helping the next hard of hearing person who came along with the same request. The staff was better trained and it was more likely that the equipment was in working order. The cruise lines have done so much to help people with mobility problems - hearing assistance would cost much less. But they won't do it unless we ask.

 

So let'e all promise to tell the ship's staff that we have a hearing loss - that could be hundreds of passengers on one ship - and ask for the equipment even if we may not use it much. The cruise lines needs to know that they have paying passengers with hearing needs. I always make sure to thank them afterwards - I tell them how much I enjoyed the shows when I had the assistive listening system.

[Golfette]

Theresa, Whiterose, Sundagger, you all make excellent points. In the above few posts, we've basically said it all. I have another point to make and that is that we, all of us HOH, should support HLAA, which is the only national voice we have, frail though it may be.

 

Individually, we cannot make any impact, but collectively we stand much more of a chance! I just learned that Brenda Batatt, a long-time National co-leader of HLAA has been named Executive Director. I have met this lady and talked to her at a number of conventions and meetings and she KNOWS what she is doing. She is extremely bright, articulate and knows the HOH world, both from a personal and technological standpoint. She was effective in presenting the HOH case for HOH accessible cell phones over a number of years before various government agencies.

 

I don't know where you all live, but if you log on to http://www.hearingloss.org , you can learn if there is a chapter or group near you. There is also a wealth of other info on hearing loss on this website. For only $25 a year, you can become a National member, receive the bi-monthly HLAA Magazine, and at least do some small part in maintaining the only organization that is dedicated to our welfare. You can also try to organize your own groups, attend the national conventions and meet hundreds of other HOH people just like yourself, visit the exhibit hall with all the equipment, hearing aids, FM systems, infrared systems, etc. etc. etc. available for HOH people and try them out. You can even volunteer to be a National Trustee and attend workshops and seminars on the ADA, leadership, HOH technology, cochlear implants and everything else important to the HOH world. I've been a National member since 1990. Nothing else you do will make as much an impact on helping HOH people as lending your support to HLAA.

 

I'll climb down off my soapbox now - thank you for "listening."

[Sundagger]

Unfortunately:

 

HLAA Dues Increase

The Board of Trustees voted to increase membership dues to $35 a year at the November Board meeting. The increase went into effect as of March 1, 2008.

 

It's still worth it! I'm anxious to meet Brenda at the Annual Meeting in Reno. She has edited the excellent magazine and was a key staffer in the cell phone hearings.

[LetsDoACruise]

You folks are awesome! ...and inspiring. I was sitting here the other day thinking about how i was doing nothing about advancing our cause. I am very good about speaking the speak, but weak in the knees when it comes to actually doing something. So, i joined the NJ chapter of the HLA! I have yet to send in the form for the national, but it will be done tomorrow. Thank you all for inspiring me.

 

OTRlady - i can't agree with you enough. I was in an auto supply store one day and the guy behind the counter was very soft spoken so i said to him (with a chuckle) "i'm kind of hard to hear do don't be afraid to yell at me". well the guy really started yelling and i thank the Heaven Father that i have a limiter on my aids because he was l-o-u-d! But, i got what i asked for so i wasn't about to tell him to quiet down. It's all in the education part. he wsa nice enough to comply so i let him be and told him I was very appreciative as i left.

 

No one is going to help us as much as we can ourselves.

Golfette - you stay up on the soapbox, lady. I hear you loud and clear. ;)

-Dave.

[Planetsis]

Okay, I'm convinced. This thread has encouraged me not to hide away my disability. I've requested an amplifier for my phone at work, and I just signed up for HLAA!

 

I have a question for those of you using the visual indicator for your telephones. I tried using one of those, but they scared me out of my skin! Everytime the light would go off, I would think that lightning was hitting my house! This was years ago, so are there any new ones available that don't cause you to p-- your pants when the phone rings?

[Juanita462]

I just checked my phone and there is no way to turn the light down - but I have got used to it and it doesn't bother me anymore. If you were sitting right beside it all the time it would be a bother as it is bright but I am mostly in other areas of the house when it rings. The ring is so loud that we rarely miss a call anymore.

 

I remember when I got my present phone and jumped every time it rang and was startled when the light flashed - but have got used to it - or my hearing has gone down as it doesn't sound that loud anymore. Actually, I only hear it if I am in the same room. Mine has a speakerphone feature which is very good as we can both listen and DH gets what I don't - at least it makes me feel part of the conversation.

 

I believe that a phone can be linked to an oridinary lamp that will blink off and on when the phone rings - anyone else familiar with this? I have seen it in sign language videos.

[wizard-of-roz]

I'm so proud of each and every one of you and the feelings and thoughts that have been shared in this thread.

To look so strong and walk so tall and then not to be able to hear ALL that is around you can be devastating! Especially when it's accompanied with very loud tinnitus.....no one else hears it; no one (who has never experienced it) understands it! No matter how you try to explain it, the looks on their faces are so puzzling, as to be questioning of what you're saying....that it's just not worth the explaining.....

So, you go through each day; sometimes with a tear; sometimes with great frustration; sometimes with fear....but, you stay strong; you attempt to hear what they're saying; you try to read their lips; you smile; you try to show interest; you even explain (to some) that you are having a difficult time hearing them, "could they please speak-up"; they look at you; cock their heads and give you an expression of questioning you're reality......you move on!!!!!

This is the life of a Hard of Hearing person....

I walk through this life with a "Hearing Dog"....I've made my statement....I'm very visible that something is different about me...nonetheless.....I'm questioned, "why do you have that dog? You're not blind! "There's nothing wrong with you, what's the dog for"? And, on and on!!!!!

The questions can be unkind to say the best and down-right rude to say the least! I try to be kind, I try to explain.....I move on!

I have learned that there is wonder to be experienced in this life; no matter the interference of the inner ear and the silence that may come with the noise.....I find my contentment in the eyes of my husband, children and grandchildren.....I especially find the gentle acceptance in the big, brown eyes of a big, black lab!!!!!!

[etoile]

I believe that a phone can be linked to an oridinary lamp that will blink off and on when the phone rings - anyone else familiar with this? I have seen it in sign language videos.

If you have a Clarity phone, this will do it:

http://www.harriscomm.com/catalog/product_info.php?cPath=47_164&products_id=19186

 

There is also this which works with a variety of devices - you can have a lamp pattern for your doorbell, your phone, etc.

http://www.harriscomm.com/catalog/product_info.php?products_id=17863

[Golfette]

Okay, I'm convinced. This thread has encouraged me not to hide away my disability. I've requested an amplifier for my phone at work, and I just signed up for HLAA!

 

I have a question for those of you using the visual indicator for your telephones. I tried using one of those, but they scared me out of my skin! Everytime the light would go off, I would think that lightning was hitting my house! This was years ago, so are there any new ones available that don't cause you to p-- your pants when the phone rings?

 

Planetsis, Dave, Sundagger, I am so thrilled that you joined HLAA and Planetsis that you stood up and asked for the amplified phone at work. It's only when we're speaking with the unified voice of many that we get any attention at all. Way to go guys!!! Also, Planetsis, your last paragraph above gave me a good laugh, even though I know that wasn't your basic intention.

 

Sundagger, thanks for the info on the increase in yearly dues - after more than 20 years, a $10 increase from $25 to $35. It seems more than reasonable to me.

 

Roz, you put it very well. Each day is a new "adventure." The word "adventure" is my way of trying to put a positive spin on what we all go through every day of our lives. I don't try to hide my hearing aids, but since moving to a new community I admit I am guilty of "Grinning and Shuffling." "Grinning and Shuffling ('G&S')" is what you do when you haven't a clue as to what people are saying to you & you murmur little noncommittal comments, hoping they fit the situation.

 

When it gets to the point where you are G&Sing all the time, it's time to reassess the situation and stand up and tell the truth. I AM HOH, CAN YOU PLEASE FACE ME WHEN YOU SPEAK. PLEASE DON'T PUT YOUR HAND IN FRONT OF YOUR MOUTH. COULD YOU PLEASE SPEAK MORE SLOWLY. I REALLY WANT TO HEAR WHAT YOU ARE SAYING - COULD WE GO OVER THERE WHERE IT IS A LITTLE QUIETER? ETC. ETC. ETC.

 

Hey, sometimes it works and sometimes it doesn't, but admitting you are HOH is much better than letting people think you are stupid.

 

Keep up the good work everyone. I'm so proud of you.:)

[Sundagger]

I'm terrific at trivia (lots of useless info in my head), but have never played on a cruise. I stopped by the Crows Nest once to see how it worked, but couldn't make out what the CD was saying. Have any of you participated in Trivia onboard? I understand that it is verbal, not written, so how do you cope with that? Have someone in your group repeat the questions?

 

I've only been on one cruise with the Explorations Cafe, and didn't discover the written trivia game there until the end of the cruise.

[LetsDoACruise]

Can't be of much help there, my friend. When it comes to presentations or games like that I always try to get there early and talk to the presenter or MC and let them know I'm HOH and require reading lips in order to understand. I then ask what will be the best location for me to sit and then i plop right down there. If i get there late then i'm toast. :confused:

-Dave.

[Kapricorn]

thanks for the link Etoile - checked it out and Bell seems to be headquartered back East. Will call them and see what the service is for the West Coast.

 

Do you think the TTY phone would work for business type calls?

Wouldn't the person answering become impatient with the time

lag caused by the typing etc.?

 

Juanita, 711 works for the entire country of Canada. I've used TTY for business type calls, and have never encountered impatience on the other end. But, then, I'm a fast typist!

 

Donald.

[Juanita462]

Thanks Donald - I am a fast typist too so it shouldn't be a problem for me either. don't like being yelled at though :(

I will be arranging for a TTY phone as I want to be independent and not rely on DH all the time to interpret for me.

 

Thanks Etoile - it seems that there are a lot of products out there that I have never heard of. We don't have much in the way of help where I live.

Have tried to find an HOH organization but they are all a long way away.

 

I have a ClearSounds phone - my old Clarity just didn't amplify enough even with an additional attached amplifier.

 

My son ordered a timer for me that blinks and shakes and beeps when the time is up. It can be put under the pillow as an alarm or clipped to a belt as a timer. I will take it with me on my next cruise in case HAL can't provide all the HOH equipment onboard.

 

Thanks everyone - you have been a tremendous help!!!

[Golfette]

Hang in there Juanita - we're rooting for you:) .

[Sundagger]

If you have a Clarity phone, this will do it:

http://www.harriscomm.com/catalog/product_info.php?cPath=47_164&products_id=19186

 

There is also this which works with a variety of devices - you can have a lamp pattern for your doorbell, your phone, etc.

http://www.harriscomm.com/catalog/product_info.php?products_id=17863

 

I strongly urge everyone to get either a Harris catalog or Weitbrecht catalog. They have good websites (where you can request a free catalog), but they have so MANY products that its difficult to compare them online. You'll be amazed at the amount of equipment available if you haven't seen these. There are many other catalogs and vendors that can be googled for a specific item, but these companies are impressive (although for price comparisons you might check Amazon, also).

 

I have a Sonic Boom alarm clock that is my comfort blanket whether at home, or traveling. There is no question - you WILL be awakened by this gadget. The biggest complaint about it on Amazon was that it was overkill for a person who is simply a sound sleeper. It has all sorts of attachments that might be of some use in some situations.

[Planetsis]

I'm not sure I would like being woken up by really loud noises! I hate getting out of bed, so try to get up a bit more naturally. I use a "sun clock" that simulates a sunrise. The light is bright enough to wake me up, and it does it very gently.

 

I also want to thank everyone on the board for being so helpful. I, too, haven't found much information about equipment and such available for HOH, so this has been a great source of information sharing.

 

Oh, I got my headset yesterday. The first call I took I accidentally hung up on the guy! Oh my, how embarrassing. I've figured out a way to use the headset without hanging up on someone, but the guys I work with and I had a great laugh over it. :p

[wizard-of-roz]

Tis why I like the gentle nudging of the warm/wet nose of a big black lab.

And, if I don't respond she will do it again with a little more force. And, if I still don't respond, she will grab the covers and start tugging!

Persistent thing, she is!!!!

[LetsDoACruise]

Tis why I like the gentle nudging of the warm/wet nose of a big black lab.

 

And, if I don't respond she will do it again with a little more force. And, if I still don't respond, she will grab the covers and start tugging!

 

Persistent thing, she is!!!!

haha...i was just joking with my family this past weekend about what would happen if i owned a Hearing Dog. my luck i'd be washing dishes and someone would knock at the door and my dog would bite me in the left rear cheek!

OUCH!! must be the phone! ...to which the dog would probably roll its eyes knowing i got it wrong and would then bite me in the left rear. :D

 

another great site for getting products is http://www.soundbytes.com/ i've bought a few of the products they sell for myself and others in my family. their prices have been very good.

 

Planetsis - what headset did you get? is it a two ear or single? i'm always interested in new toys.

 

i'm just trying to determine what HAL will have for me (that will work) and what i should bring with me? maybe i'll request it all and bring my stuff as backup just in case.

-dave.