Rebekah Schilperoort

People with hearing loss are often afraid to admit they have a handicap, says Karen Frohrib, national program director for the Hearing Loss Association of America.

Of the many residents of West Seattle and the overall 28 million Americans who have hearing loss, less than 1 percent are members of the national self-help organization, said Frohrib.

Judi Carr, meeting coordinator for the organization's Washington state board and a member of the West Seattle and downtown chapters, believes the group's low member count is related to people being wary to admit they have a handicap.

"Most of the people I know in the West Seattle group are late deafened and, in general, it takes about eight years for people to do anything about it," Carr says. "Or they wait until their wife or husband has said 'Turn down the TV!' for the 11th time."

Nationally, the group consists of people who experience hearing loss and is one of the only national member organizations that seek to educate people with hearing loss and open the world of communication for them again, said Carr.

The West Seattle chapter meets once a month and often a guest speaker discusses hearing-loss issues such as new communication technologies.

"Hearing loss is scary," said Carr. "For me, the group has provided the support and education I need to understand what I am going through."

But many more don't seek help because their hearing loss has made them feel isolated from their family, friends and the rest of the world.

"People who are hard of hearing get tired of asking 'What?' and people get tired of having to repeat themselves," said Carr. "So a lot of people with hearing loss just quit going to social events where they have to communicate, and this can have a huge negative impact on their lives."

Not only personal relationships are affected, but also a person's professional life can be wrought with frustration and anxiety for someone losing their hearing.

They either isolate themselves, hold the floor or can't understand the conversation, said Carr.

"I can't hear well at all when I am out at a restaurant or someplace like that," said Jeanne Galletly, a member of the West Seattle chapter. "Sometimes I just want to stay home and not deal with it, but I force myself to go out because I don't want to be a hermit. I just try to as cheerful as I can."

Pat Webb was a musician for many years but now she can no longer distinguish between musical notes.

"Life has pretty much completely changed for me," she said. "When I go out with a group I may as well just sit by myself because I can't understand what's going on."

Many of the members wear buttons fastened to their shirts that say, "Please face me - I lip read."

"It's hard when someone tells you a joke and you miss the punch line," said Charlie Runke. "You can't join the party."

Hearing Loss Association of America focuses on teaching people to understand what is out there for them in terms of technology and interpersonal communication skills.

Many members of the West Seattle chapter said the group has helped them face their handicap and find comfort with others experiencing the same difficulties.

The organization also lobbies the federal government for new laws to support the large population of Americans who suffer from hearing loss.

Hearing aids are a hard-of-hearing person's first line of defense, but many who need them cannot afford them. The average cost of a pair of hearing aids is about $4,000 and rising, said the president of the Washington state board, Penny Allen, at a West Seattle chapter meeting last week.

Some groups offer free refurbished hearing aids, but since everyone's hearing impairment is unique it is hard to find the right one without going through many adjustments, said Carr.

Insurance agencies typically do not cover the cost of hearing aids, and Medicare provides no coverage. As a result, about 75 percent of people who could benefit from using hearing aids do not use them, said Allen.

Allen, who has been hard of hearing since she was in her 40s, has been lobbying the Washington Legislature on a volunteer basis to pass laws that would alleviate the financial burden of paying for hearing aids. She encouraged members of the West Seattle chapter to write their state representatives and senator for support.

"It's up to us to tell them what we need," said Allen. "They don't know anything about hearing loss or what we are going through. I'm very optimistic we can do this, but this is a grassroots effort and we must be persistent."

The group also is lobbying for government to make it mandatory to test newborns and young children for hearing loss. According to the association, hearing impairment is the number one birth defect in the United States.

The group's campaigning also helped obtain a new Federal Communications Commission regulation. Beginning Sept.16 all cell-phone service providers are required to make available cell phones that can be used with hearing aids or cochlear implants.

The low national enrollment and lack of funding isn't helping the organization in these efforts though, said Carr.

"The organization is 25 years old but still only has less than 1 percent membership," she said. "It's very important to have substantial membership nationally because it gives us more clout to get what we need from the federal government."

There are 42 million Americans with disabilities and hearing loss is the largest disability group, according to the self-help organization, and more than 60 percent of those with hearing loss are between the ages of 21 and 65. The Hearing Loss Association of America, formerly known as Self Help for Hard of Hearing, welcomes people of all ages. Contact the local West Seattle chapter by calling 932-6427. To join membership fees are as follows: Individual ($25), Student ($20), Professional ($50), Corporate ($100). www.hearingloss.org.

Rebekah Schilperoort can be reached at rebekah@robinsonnews.com or 932.0300.