A Silent Disability

Editor: Know someone who's hiding his hearing loss? Or withdrawing because it's just too difficult to understand what people are saying? Or maybe you know a family member or friend who just doesn't "get it". Here's a wonderful article that does a great job of revealing some important aspects of hearing loss. Do you know anyone you could share it with?

Reprinted with permission from the Star Tribune

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From the newsroom of the Star Tribune, Minneapolis, Minnesota, Tuesday, September 28, 2004 .....

A silent disability

Donna Halvorsen, Star Tribune Staff Writer

Donna Carlson avoids using the phone as much as possible, doesn't try to keep up with family conversations and hesitates to speak in group settings. She skips many concerts or other events, chooses restaurant tables where her back is to the wall and prefers driving alone. She also fakes a lot.

Carlson, 71, has a severe hearing loss. So when she was asked to be president of the St. Louis Park Women's Club, she realized that she wouldn't be able to hear people in the back of the room, or even sitting beside her, and certainly not behind her.

"Then I thought, Phyllis McQuaid did it, I can do it," she said.

On Oct. 5 Carlson, McQuaid and three other hearing-impaired women, club members in their 70s, will take their disabilities out of the closet in a Women's Club program, laced with humor, called "Can you hear me now?"

The program will let members know about their new president's disability and what they can do to help her and others who are hearing-impaired. It also will put a spotlight on hearing loss, which afflicts 28 million people nationwide, including a large number of older people.

These women are all physically active, mentally sharp and willing to tell jokes on themselves. But they say their disability is ignored, and while the five of them might be too scrappy to give up on life, others with hearing loss withdraw because their impairment makes life too difficult.

"I'm not going to quit, but there are a lot of lonely people out there who are simply afraid to go out in society because they can't hear," said McQuaid, 76, a former state legislator, St. Louis Park mayor and school board member who has a severe hearing loss.

They call hearing loss "the silent disability" because, unlike blind people who have white canes, most with hearing loss are noticeable only by their hearing aids, which may be hidden deep in their ear canals.

They may not speak at events or meetings. Or they may bluff their way through, worrying afterwards that they said something inappropriate.

"You nod a lot," said one.

"You feel dumb - really dumb," said another.

And that's with hearing aids. Many older people who could benefit from aids don't have them. Of 9 million Americans older than 65 with hearing loss, only 40 percent use hearing aids, according to the National Council on the Aging. Of 10 million people 45 to 64 with hearing loss, only 13 percent have aids. Denial, cost and vanity are among the barriers to hearing aid use, the council found in a large national study.

Cost represents a major issue for some; mid-range hearing aids cost about $2,000 each, and they have to be replaced every five years or so. Jane Gratton, 75, of Edina, who has had a severe hearing loss for 10 years, said she paid $6,300 for her two current hearing aids about three years ago.

Few health plans cover hearing aids, but untreated hearing loss in older people "is a serious and prevalent problem," the council said in its report. The study found that people who do not wear hearing aids are likelier to experience depression, anxiety, paranoia and emotional turmoil, but those who do reported better relations with family members, greater independence and better feelings about themselves.

The Hearing M'aids, as the five women call themselves, rehearsed their program at McQuaid's house one recent afternoon. Amid the laughter, they kept coming back to the seriousness of their disability. Life for them is difficult even with hearing aids, they said, partly because of public ignorance about hearing loss, and partly because of people's willingness to suffer silently, a mold they're trying to break.

"I think, as with many disabilities, there is a carryover from the days when people tried to hide their disabilities for fear of the stigma or discrimination," Carlson said.

Joyce Tibbs, 74, an artist and retired teacher, has a moderate hearing loss; she reads lips and has two aids. She tells people who don't want to get hearing aids "that it's nice to hear."

"I'm not ashamed to have them -- they help me," she said. "We depend [more] on our sight and our hearing for our enjoyment in life the older we get."

But it's hard work, and it wears the women out "because you're trying hard to understand and keep up and listen," said Joanne Keedy, 71, whose hearing began deteriorating five years ago. She continues to work part-time as a medical receptionist. Carlson, who worked as a personnel specialist in the St. Louis Park school system for 20 years, said her hearing has declined in the past 35 years. She depends on her residual hearing, hearing aids and lip-reading to hear.

Gratton has a speaker phone, and her husband listens in on her conversations, because she often has trouble hearing. "Some people I can understand, and some people I can't," Gratton said. "People naturally think that if they talk real loud, it'll be better, but it's not necessarily true."

McQuaid first got hearing aids in 1988 when she was elected to the Minnesota Legislature. She had difficulty hearing when she was in large rooms or when legislators spoke without using microphones.

Her hearing has declined increasingly to the point where she's deaf in one ear. She gave up volunteering at an elementary school, and she no longer sings because she can't hear her voice. She still volunteers as a patient representative at Methodist Hospital in St. Louis Park, bowls, plays bridge, delivers Meals on Wheels and is active in her church.

Like the others, McQuaid often shies away from situations where hearing will be difficult, but she went with her daughter Joanne Hinderaker to the opening of the light rail system, and many people sought her out to talk. "Joanne told me what they said," McQuaid said. "She was my interpreter."

McQuaid relies on her dog, Rocky, to tell her when someone's at the front door. "He doesn't hear the phone," she said, then paused and added, "Well, he hears it."

"But he doesn't answer it," one of the women said, finishing the sentence. That left the punch line to Hinderaker, who said, "I just hate it when he doesn't pick up."

Hinderaker, who will moderate the program, became a catalyst for it after she attended a St. Paul workshop to learn how to help her mother. It had a dual message, she said: Hearing-impaired people need to get better at telling others what they need, and everyone around them should know how to meet those needs better.

"It was sort of like a news flash to me," she said. She and her seven siblings had been dealing with their mother's hearing loss for years, "but we don't talk about it in that way, how everybody needs to be trained."

It isn't just the hearing-impaired who lose when they withdraw from the world, Hinderaker told the group. "You're talking about a lot of creative energy that the group loses if you don't participate," she said. "It's an increasing problem in your generation and my generation, and none of us get it."