Marge Wells misses the spontaneity of life.

From: Barre Montpelier Times Argus, VT - 01 Mar 2003

March 1, 2003

By SKY BARSCH

Staff Writer

A dynamic woman of 57, Wells remembers the days when she could hear the winds of a coming winter storm, or respond to a friend calling out a greeting on the street. But she isn't dwelling on the loss of her hearing, nor is she in denial of it, like many of her peers.

Wells is embracing life's lemons and is running the lemonade stand -- or trying to, at least.

"Life is just a little bit different," she says, sitting in the living room of her Montpelier home. Her own pastel artwork graces the wall, and a computer sits on a desk -- the means we use to communicate. I type questions that appear on the monitor, and Wells speaks -- both clearly and eloquently -- her thoughts.

Wells and others deafened later in life are caught between two worlds: the hearing community and the "culturally Deaf" community, as those who were born deaf and are fluent in sign language generally refer to themselves.

"I sign," she says. "But many deafened people do not. People say, 'Well, you sign, so how come you don't fit in?' That's like learning to speak French, visiting the country and considering yourself a French person." She laughs at her joke, a laugh that is loud and infectious.

Her tone changes as she recalls the 10 years she worked as a rehabilitation counselor for the deaf. Through the sobering stories she heard and through her own experience, Wells, a divorced mother of two and newly a grandmother, has become committed to developing a Vermont support group for those who lose their hearing. It would be a place to discuss frustrations, anxieties and the journey to accepting hearing loss. Wells envisions the meetings as a safe chance to discuss coping techniques, ways to communicate with family and friends, and the latest in medical advances.

"Deafened folks are so beat up on, they have zero self-esteem," she says. "When I became deafened, I had no role models. It took a very long time to fully pull together the scattered support and knowledge to get on with it. I think by having a support group we can share our knowledge and success and help each other to fuller lives."

Acceptance of the loss is a tough first step. "When I see others going through denial, I ask them if they use the phone. They say, 'Use the phone? That's stupid. Who needs the phone?' I ask them if they watch TV, and they say, 'TV? There's nothing good on TV.' Many of them have never been asked that question. And when I asked them, they couldn't look me in the eye."

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Wells, who grew up in Cabot and later lived in Middlesex, began to lose her hearing when she was in high school. She had suffered serious ear infections after her tonsils were removed at an early age, although her doctors never identified that as the reason for the loss. She has never gotten a concrete diagnosis of the cause of her deafness.

As her hearing diminished, Wells admitted her own confrontation with denial -- both within herself and from others -- and despair. She remembers that in high school she was accused of simply being lazy and a daydreamer.

"I did not use a hearing aid until I was 37, yet I had a severe hearing loss. Over the next eight years or so I lost all of my hearing. My personal line as to being deafened, instead of hard of hearing, is when I could no longer use the phone."

Her family and friends sometimes told her she wasn't trying hard enough, or insinuated she was suffering a mental rather than a physical problem.

"I felt so responsible for not being able to hear. I thought it was my fault," she says.

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Wells has since learned what the support of a true friend can mean.

"Marge was the first person I met when I moved to Vermont in 1971," says Lyn Turcotte of Montpelier. "We hit it off. She's really a fun person."

As Turcotte removes her jacket upon arriving for a visit, Wells starts to get her tea.

"What kind of tea would you like?" Wells begins to ask, then answers her own question. "Earl Grey. And how do you want it?" Again, she answers her own question. "I know, with milk."

As Wells boils water, Turcotte recalls her own denial of her friend's hearing loss.

"She kept it very well hidden by the use of humor. I didn't realize until things were really serious. I thought it was real, but I thought she was going to the best hospital, and they were going to fix it."

When Wells' hearing did not improve, Turcotte and some other friends began getting together weekly to learn American Sign Language.

"I got more educated about people with hearing loss, like to make sure I am looking directly at them when I am speaking," she says.

Turcotte, a mental health counselor, says she sometimes gets frustrated with her own lack of communication skills. "It's hard to talk in depth. It's not that Marge isn't capable of it, it's that I don't know enough sign language," she says.

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Aside from the practical challenges, Wells and Turcotte maintain a typical best friendship. They garden, cook, walk and create art together.

Wells says she is lucky to have such a friend, but that many who are deafened feel very alone. Those in denial of their hearing loss are often the most depressed, especially those who are unaware of assistive technology, such as telecommunications typewriters (TTY) and flashing-light alarm clocks. That's all the more reason for a support group, Wells believes. She imagines her peers will share educational materials and exchange adaptive equipment within the group.

Such a group would have to meet using "live captioning," which requires a trained captioner, like a court stenographer, keying in the conversation to appear on a monitor, with a one-tenth-second lag time. The service is expensive, at $120 for two hours, and scarce. There is only one captioning service in the state, according to René Pellerin, state coordinator of services for the deaf and hard of hearing with the Department of Aging and Disabilities.

"Do you know how easy it is to start a support group for hearing people?" she asks.

If a deaf person wishes to use any public resource such as a taxicab, or see a film, the Americans with Disabilities Act requires the operator to provide reasonable accommodations to make that possible, according to Casey Stavropoulos, a spokeswoman for the U.S. Justice Department in Washington, D.C. But because the support group is optional and not a "public event," the law doesn't require anyone to fund captioning.

Wells says she is still at "square one" in organizing the group. She is working with Deborah Lisi-Baker, director of the Vermont Center for Independent Living, to write a grant proposal to the Central Vermont Hospital Auxiliary to pay for the captioning. VCIL has offered the use of its meeting room in Montpelier, and Wells is exploring public meeting spaces as well.

She knows seven people in central Vermont who would attend the meetings and is hoping that number grows, planting the seeds for more groups to sprout around the state.

Pellerin confirmed that although there are groups for the hard of hearing, a support group for the deafened would be the first in the state.

Turcotte says her friend would make a super facilitator for the meetings. "Marge is organized, motivated and a caring person. She's an advocate for the hearing impaired."

It's apparent from a first impression that Wells is a strong woman, personable and smart. In addition to working toward a master's in psychology at the St. Johnsbury campus of Springfield College, she is on the boards of VCIL, Deaf Victims Advocacy Service and the Vermont Americans with Disabilities Act Coalition.

"These people just deserve to have someone say, 'Yeah, I know what this is like,'" Wells says.

And she has a strong motivation to achieve her dream of bringing her peers together.

As her dog Oolloo nudges her to take him outside, she says, "I don't care about hearing the birds singing again. I want communication."

Wells invites anyone interested in joining her group to contact her at midvt@aol.com.

Contact Sky Barsch at sky.barsch@timesargus.com or 479-0191, ext. 1153.

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