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December 2, 2002

Deaf-blind find support

From: Rochester Democrat Chronicle, NY - 02 Dec 2002

Greg Livadas
Democrat and Chronicle

(December 2, 2002) — Lynne Rowemel Gentry worked as a nurse until nearly 20 years ago when she noticed that she was losing her hearing.

“I went around banging pots and pans” to check her hearing, she said. “It was scary.”

Her eyesight also began to fail, and Gentry could have found herself feeling angry, depressed and isolated from her friends and society.

But she and other deaf-blind people are coming together to discuss common experiences in a support group started by the Monroe County Association of Hearing Impaired People, although the funding for its continuance is in question.

“It sure isn’t a ‘woe is me’ camp,” said Gentry, 68, of Rochester. “There are very intelligent people here. It’s good to be around and have friends who have the same problems.”

The Deaf, Blind or Visually Impaired Social Support Group meets monthly -- the next time from 7 to 9 p.m. Wednesday -- at the Health Association, 1 Mt. Hope Ave. It has been enthusiastically embraced by its members, who say support services for the deaf-blind have been lacking in the Rochester area.

Members are so eager to socialize with others like themselves that they usually must be repeatedly reminded to leave the building after their meeting so it can close.

“It has given people a forum to come and share with others who understand and encourage others to make a successful adjustment to vision loss,” said Barbara Bushart, the support group coordinator.

Patti Lago-Avery of Pittsford, the chairwoman of the Deaf Blind Collaborative Committee, which helped identify the need for such a support group, said that most people assume deaf-blind individuals are like Helen Keller.

“She was an extraordinary person from a very wealthy family that was able to provide her with 24-hour services and a lifetime companion that was her teacher and friend,” Lago-Avery said.

“This is not how most deaf-blind people function. We range from being very intelligent and being independent, to being individuals who have multiple disabilities and need group home care.”

Ten deaf people with limited vision attended the support group’s November meeting. Some attendees only recently lost their hearing and some vision as they grew older. Many of them had personal interpreters who used sign language directly in front of them or used tactile interpreting, sign language presented in their hands.

Most had the benefit of some sight, if only in a limited area directly in front of them. Many have Usher syndrome, a condition found in up to 5 percent of people born deaf, which gradually limits peripheral vision.

Some support group members are students at Rochester Institute of Technology’s National Technical Institute for the Deaf.

“When I came here, I was really shocked. There was no deaf-blind community here,” said student Molly Wezel-Peterson, 22, of Minneapolis. She recently helped form a similar support group on campus.

She said the support groups have meant less isolation for students, who sometimes are viewed as unfriendly when they don’t see or respond to someone waving hello.

“It is hard for deaf-blind people, who feel very isolated, to meet people,” she said.

The group has enabled Patty Starr, 46, of Brighton, to share her experiences with younger deaf-blind parents.

Her advice: “Teach your child to inform their parents all the time where they go, even if it’s for a few minutes.”

Members of the support group are typically accompanied by friends, family members or support service personnel who drive them to the meetings. Anne Makowski of Gates regularly drives her husband, Paul.

“Just the fact he’s more able to communicate with other people makes me feel better,” she said. “It’s the first time he’s been around other people who are deaf and blind too.”

Paul Makowski, who has a diminishing range of vision, was a technician in Owego, Tioga County, before moving to the Rochester area because of its support services for the deaf here.

“It has been very frustrating for me,” he said. But the support group has helped.

“It’s nice to know there are other people in the same boat,” he said. “I enjoy socializing with other people here who are deaf-blind.”

The friends and spouses also find solace each month at the meetings, as they meet in a separate room.

“This is a tough job,” Anne Makowski said.

“We talk about the problems you run into. We kind of support and encourage each other.”

E-mail address:

For more information about the deaf-blind support group, contact Barbara Bushart at (585) 340 2313 TTY or via e-mail at

Copyright 2002 Rochester Democrat and Chronicle.