Foundation Presentation

My name is Raegene Castle and I would like to give you a little background on how I became involved in helping others with hearing loss.

My own hearing loss was sudden and dramatic. In January 2000, I contracted Meningitis and was in a coma for 7 days. I wasn't supposed to live, the doctors saved my life by giving me antibiotics; this is the cause of my hearing loss. After I woke from the coma I couldn't walk, feed myself, see or remember anything not even my grandchildren's names. The doctors say I was a very lucky person they thought I might not make it. I believe I was very blessed. It was not my time. My sister said because there were so many people praying for me God said "So many prayers I guess I'll send her back."

Everything has come back sufficient enough for me to live a very full life except a severe hearing loss.

Before I became hard of hearing I was just like you, I didn't know any of the fact about hard of hearing people.

There are things I need to do with the rest of my time on earth.

Before I became hard of hearing I was just like you, I didn't know any of the facts about hard of hearing people.

My husband and I had to research everything for ourselves. My doctors and audiologist told me about hearing aids. They did not mention about other devices that could help me to hear. In our research we discovered an organization SHHH (Self Help for Hard of Hearing.) This group has helped me tremendously.

I was fortunate enough to go to one of their "HAT" (Hearing Assistive Technology) weekend trainings in Portland, Oregon. I learned a great deal about assistive devices, most of all I was given the idea of making these devices available in our local library.

For the past three years I have been working with people who need help and I show them what is out there to help them. I have also arranged for the use of a room in our local library, which we started using. It will be open every first Wednesday of the month to help people with hearing loss. It will house all of the various devices and people will be able to fill out a questionnaire as to where they have trouble, try the devices out and see which ones will help them. They then will be given catalogs to go home and purchase any if they wish.

Let me tell you something that I have learned which really opened my eyes. In the United States there are between 47 and 52 million people with disabilities. Of that number 28 million are hard of hearing. 1 + million are in wheelchairs and look at all the work that has been done to help the wheelchair bound population compare that to the work that has been done to help the population with hearing loss. Now, I'm not saying that there is anything wrong with all the help given to people in wheelchairs (I should be in one myself) however, when you think of the help that is not out there for hard of hearing people when their numbers are so high you realize something has to be done.

It truly is the "Silent Disability."

Let me tell you a few brief stories of how dramatic the change can be when people are informed about how to help themselves.

Last month I met with two women that wanted their mother to see what I had learned in my three years of using assistive devices. These ladies had not had a meaningful spoken conversation with their mom in many years. They could only communicate with her by writing everything down. By the way the three of them lived together

Mom could not hear her daughters and had no way of being involved in their conversations or any other conversation.

I showed the mother how to use a simple device that is sold at Radio Shack for $39.

The results were instantaneous and very dramatic. She could hear them and they could talk to their mom again.

The tears flowed - the joy was immediate.

The second is through the use of an array, the black necklace I am wearing. This is an assistive device. It is a simple system that houses microphones that
talk to my hearing aid. My girl friend told me when I first got it "Everyone will think I have terrible taste in jewelry" what do you think????

The maker of the array is Dr. Bernard Widrow, who is a brilliant man, professor of engineering at Stanford.

Dr. Woodrow took this device to Texas to meet with a number of parents of little children with profound hearing loss.

These children had never heard the correct pronunciation of their parent's speech.

They had no way of hearing words, as they SHOULD sound.

Their speaking ability was that of people who do not know what sounds are and they have had no reference from which to draw.

I am sure you have heard this type of speech.

Within a few hours of wearing the array and hearing the CORRECT tones and speech patterns, these little children were talking with their parents and their parents could talk TO AND UNDERSTAND their children.

Can you picture that room? Can you imagine the emotions in that room on that day? A Mother and Father being able to talk with their child for the first time. You can bet that everyone there will remember that day for the rest of his or her lives.

I can't tell that story without getting goose bumps.

The third is a local businesswoman who some of you may know, she has had a severe loss of hearing for over twenty-five years which was getting worse. Because her business was conducted via the telephone, she was beginning to believe that she was going to have to close up her office. She could not continue to use the equipment she had and did not know options were available to her.

I met with her and showed her the free equipment available through the telephone company and now she has a renewed vigor in her business and her personal life. All because she became aware of what was available.

The last is an all too common occurrence, a man in Redwood City had a stroke, and the results left him with a profound hearing loss. His ability to communicate was almost gone. He slipped into a depression, as would most of us if we were to have a sudden and very dramatic disability thrust upon us. With a few simple inexpensive devices, that all together cost less than $300, Al is a productive human being again. He and his family are enjoying life again. These devices helped him talk to his wife, family and friends at home and away from home. Watch and hear clearly the TV. Talk to his family on the phone and hear them distictly and hear when he goes to the restaurant. All things he couldn't do with just his hearing aids.

I can not imagine how I would feel if I could not hear my husband, my family, my 5 grandchildren or my friends, I believe it is difficult if not impossible for a hearing person to feel or conceive of that experience.

Doctors and audiologist play a large part in helping restore what hearing they can. Assistive Listening Devices (the term) ALD's and self help groups like SHHH offer a great deal to help people regain that feeling of "Self Worth."

Please let me explain that doctors and audiologists do not have the time to explain and demonstrate the additional options that are available. My husband Jack and I spend a lot of time each year researching and checking the various ALD's that are available.

Staying home and not being involved in my family or community is not an option that we would accept.

In attending national SHHH conventions we meet with the suppliers of all the various ALD's. Through trial and error we found what was best for me and many of the members of our SHHH chapter.

SHHH Peninsula began an outreach program to help those people that have not heard of all the options, which are available. In order to accomplish the goals that we have set it became apparent to us that we needed to have a central place that is accessible to everyone, a place where people can come, try out all the various pieces of equipment and see what works best for them.

The Redwood City library has made a room available to us.

We have assembled a list of equipment we will purchase.

We will contact the suppliers.

We have trained a list of volunteers to staff the room.

We are "Set To Go"

The remaining piece of our plan is obtaining the monies we need to purchase the equipment.

Redwood City has a population of approximately 65,000 people, 15% or roughly 9,700 people in Redwood City have some form of hearing loss. We want to reach out to as many of these people as possible. A Grant of $4,000 will give us the necessary funds to buy the basic equipment to help these people.

If you would like a copy of the list of the equipment and how it works I'd be happy to forward it to you.

The change in their lives can be as dramatic as those people I told you about or any of the hundreds of people I have met in the past three years.

Keep one fact in mind; loss of hearing is not an old person's disease. Over 60% of the people that have a hearing loss are under 54 years of age. With the music that the kids are listening to today at the volumes they are using, this number will grow.

Last, if you wish to donate money, which we will gladly accept please, make your check payable to SHHH.

Remember, our chapter takes care of the whole Bay Area, not just Redwood City.

I believe that we should leave this world a little bit better that when we were born into it.

There are so many things we can do to help the people who don't have what we have and we don't have to have the government do it. People can do it for themselves. All they need to know is how.

With Gods help and the help of my family, friends and a whole lot of good people like you, we are doing just that.

Helping others who truly need the help is the highest calling. That is why I think I am truly a blessed person and I was allowed to live 3 years ago.

Thank you very much for your time,

Raegene Castle

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