Organization focuses on hearing loss

From: Rochester Democrat Chronicle, NY - Nov 3, 2003

20 years later, Rochester's SHHH is still going strong.

By Greg Livadas Staff Writer

(November 3, 2003) — What began 20 years ago as a living room meeting of nine people with hearing loss has evolved into an organized and powerful outreach and advocacy group that educates parents, lobbies for hearing aid insurance coverage and helps make churches, theaters and courtrooms more accessible.

The Rochester Chapter of Self Help for Hard of Hearing People — 250 members strong — meets monthly to discuss hearing issues, such as cochlear implants, the latest telephone or hearing aid technology, or how spouses of those with a hearing loss cope.

“At that first meeting, we didn’t know where we were going to go. But it’s become a way of life,” said Vern Thayer, 86, of Irondequoit. Thayer, who progressively lost his hearing, and says he’s now clinically deaf. But with the aid of technology, including powerful hearing aids, he can hear well enough to speak on the telephone.

“If it were not for SHHH, I don’t know what I would be doing,” Thayer said. “The technical things I’ve learned through SHHH have kept me hearing. I still do very well and I’ve got to credit SHHH for that.”

SHHH (pronounced by saying each letter, not ‘shhhh’) has 250 chapters with 10,000 members nationwide. The Rochester chapter, which has free monthly daytime and evening meetings open to the public, “is very well organized. Some of the things they’ve done have been model programs for the rest of the chapters,” said SHHH Executive Director Terry Portis, of Bethesda, Md. Portis will be guest speaker at the chapter’s meeting Tuesday.

Portis said people with hearing loss often feel isolated from friends and family. Discussing that with others who have experienced it is important.

“Having a conversation in a noisy restaurant is difficult for anyone, but imagine when you have a hearing loss and catch every third word,” Portis said. Depression is also common “as a natural consequence of losing one of your senses you’ve had with you all of your life.”

Portis said the local chapter has involved professionals — audiologists and otolaryngologists — on a professional advisory panel to help provide advice and support. “They’ve done a good job of linking the consumers and professionals on a continual basis,” he said.

Growing acceptance

Sue Miller, 64, of Victor, who held that first local SHHH meeting in her home, said SHHH is the perfect outlet for those looking for information.

“We’re trying to make it OK for people not to hear well. It’s OK to wear a hearing aid,’’ she said.

Miller, who has worn hearing aids since she was 19, said “it’s much more acceptable to have a hearing loss than it was 20 years ago. No one really wanted to acknowledge they had a hearing loss 20 years ago.”

Yet there continues to be delays in seeking help.

“The average length of time they realize they have a hearing loss to the time they acknowledge it or get help is seven years,” Miller said.

Once fitted with a proper hearing aid, adjusting to it can be another issue.

“So many people are under the illusion you put a hearing aid on and you’re all set, back to normal,” Miller said. “Hearing aids do not do for ears what glasses do for eyes.”

Activism

While members share experiences, advice and camaraderie, the sharing doesn’t stop there. They attempt to get churches, courtrooms and theaters to install induction loops that better enable some to hear what is being said.

“There are probably more churches and theaters in our area with assistive devices than any other area,” Thayer said.

Arthur B. Curran, 78, of Rochester, has been a member of SHHH for about 18 years. A retired state supreme court judge, he’s helped the Hall of Justice as well as town courts become more accessible with infrared loop systems.

“I first noticed my hearing loss in City Court about 25 or 30 years ago,” Curran said. “They didn’t have any assistive listening devices then.”

Some SHHH members also attempt to educate restaurant owners: seat customers in well-lit areas away from the noisy kitchen and have specials written down, not just rattled off by a waiter.

The chapter’s outreach committee talks to employers and senior groups, and their parent committee helps educate those who discover they have a child with a hearing loss. Ann Scherff, of LeRoy, Genesee County, joined SHHH about eight years ago because her son, Matthew, 14, is deaf.

“I find their meetings very informative,” she said. “It’s nice to have the interaction with people. What I learn there I can share with other parents who I meet.”

Powerful lobby

And the SHHH legislation committee attempts to educate lawmakers to pass a bill that would provide insurance coverage for hearing aids for all New Yorkers. Now, only children and those with Medicaid are reimbursed up to $1,000 for a hearing aid, said Marcia Dugan, of Jerusalem, Yates County.

“The hard of hearing person needs to become proactive,” said Dugan, a past national president of SHHH.

And their lobby can be powerful. Dugan estimates about 28 million Americans — about 1 in 10 - have a hearing loss. Aging baby boomers and longer life expectancies will mean that number will continue to grow.

“The sad fact is, though, only 6 million use hearing aids,” Dugan said. “That’s one reason we don’t have insurance for hearing aids. Those of us who use them, we know how important they are in our lives.”

People considering using a hearing aid make up a large portion of those who first learn about SHHH, Dugan said. “They don’t know what to do. So many of the members after getting informed are advocates. They educate people who need educating.”

Spreading the word

The local chapter, which typically has 30 to 50 people at each meeting, is trying to get more young members. January’s meeting topics are job interviews and employment issues.

Previous meeting topics have focused on others in the household.

“Hearing loss affects the family,” Dugan said. “They have problems because there is someone in the family who has a hearing loss and hearing people become the hard-of-hearing person’s ears and that codependence is not a good thing all the time.”

Slowly their message is being heard.

When Scherff learned about assistive devices that could help those with hearing aids in her church, she persuaded St. Paul’s Lutheran Church in Batavia to buy three portable FM units.

“They said, ‘let’s try it and see if people respond,’” Scherff said. “They had to buy seven more devices because more people wanted them.”

GLIVADAS@DemocratandChronicle.com

If you go
What: Monthly educational meetings of Self Help for Hard of Hearing People, free and open to the public.
When: The first Tuesday of each month. Two meetings typically scheduled: 11 a.m. and 7 p.m. Where: St. Paul's Episcopal Church, at East Avenue and Westminster, across the street from George Eastman House. Enter double doors at rear of church, go upstairs, turn right and enter Vestry Room where SHHH meetings are held. Refreshments served.
Contact: SHHH hotline at (585) 266-7890 or
www.shhh-rochester-ny.org.

Copyright 2003 Rochester Democrat and Chronicle.