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January 30, 2007

Minnesota woman gives voice to deaf cancer patients

From: KARE - Minneapolis,MN,USA - Jan 30, 2007

In television, sound can be as important an element as the video. However, some important stories have no sound at all.

"I grew up in Saint Paul," 57-year-old Anita O'Hara Buel says - but it isn't Anita's voice you hear, it's the voice of an American Sign Language (ASL) interpreter. "And for the first six years of my life, the doctor told my parents that I was actually mentally retarded."

It took some alert nuns at a Catholic grade school to realize that the unresponsive tike wasn't mentally impaired but simply could not hear their directions. Anita is deaf, but her lack of hearing did not mean that she would tune out the world. In fact, the girl who had been regarded as retarded went on to earn a degree from Gallaudet University in Washington, D.C, America's premier college for the deaf.

While at Gallaudet, she changed her life and her name. Classmate Tim Buel signed the sweet nothings that won her heart. They have been married now for 34 years and they have two children and three grandchildren. None of them are hearing impaired. Anita's world is larger than that of her family or her school. Her world may be sound-proof, but it is also focused.

"There is a web site you just sent me and it talks about the end of life in different cultures," Anita told a meeting of Minnesota's Community Health Workers Network in Minneapolis in January. They had been discussing an issue related to hospices. "We talked about, as a team, to actually get the deaf hospice, on to that web site as well."

Anita used sign language and a number of available interpreters to present deaf-community issues and opinions to the organization of her fellow Community Health Workers. There were health workers of every Minnesota ethnic group present. All are hearing, with the exception of Anita.

Since she uses a variety of interpreters, both male and female, Anita speaks in many voices to Minnesotans of many backgrounds. Her silent eloquence has not gone unnoticed. Later in the meeting, the group elected Anita as the co-chair for 2007.

"Well, thank you. Thank you," a clearly surprised and delighted Anita signed, "I really value this peer network."

But helping her peers has not become Anita Buel's life work. Two days after the Network meeting, Anita sat alongside Marijane Ninnemann at Fairview Southdale's Breast Center in Edina.

"So, you're a breast cancer survivor?" Oncologist Dr. Barbara Bowers asked Marijane through interpreter Bonita Reiss. "For four and a half years, yes," Marijane signs in reply.

Since ASL is an entirely separate language from English, some medical terms and concepts don't translate easily.

"I'm not sure what that means," Marijane soon signs to the doctor. That's when Anita lends a hand, two hands actually. She signs to Dr. Bowers.

"I had advised deaf patients to write notes and that way, the next time, if it's a new doctor, they could share that information." Dr. Bowers takes a handwritten note from Marijane and nods.

Anita carries immense credibility with deaf breast cancer survivors because she is one herself.
"Yeah, really," she recalls, "I was 29-years-old when I noticed that there was something wrong with me."

It was 1981. The young mother was having trouble breast feeding her second daughter, but her doctor told her not to worry about it. Anita did worry about it for several months. She could feel a lump. Then, she met another deaf woman who had had a mastectomy.

"And she said, 'you mean your doctor hasn't even recommended you to get the mammogram?' and I said 'what's that?'"

Using an old military TTY teletype machine, it took Anita six tries to get a mammogram appointment. That led to the January, 1983 mastectomy that saved her life.

"And now," she smiles, "I am a breast cancer survivor and I'm still here today." She is also something of an icon in the deaf breast cancer society. Her struggle for understanding has prompted her to try to smooth path for others.

"Well, yeah, from that experience. I think it evolved into going to this hearing group for support."

Anita found the language barrier between her and the hearing breast cancer survivors too daunting for true communication. Her reaction was to help found the Pink Deafies, a kind of social club for deaf breast cancer patients and survivors. The women, who now number about 15, meet once a month under the unifying banner of a self-made quilt which features a pink ribbon for each member.

The "Pink Deafies have been a great support group, but Anita wasn't satisfied with that effort alone. She realized that deaf women needed someone who could hear their silent pain in person.

"If not for Anita," recent breast cancer patient Judy Brambrink asks, "deaf ladies would, uh, where would we go? Without her, I would feel so lost and helpless."

Anita began accompanying women, like Judy, to their oncologist appointments.

"I sometimes felt so overwhelmed and scared," Judy explained, "I was new and I was crying and she was able to help and if I had forgotten to ask a question, she was able to interject and help with the communication."

Judy says Anita's work is vital. Dr. Bowers agrees. "It helps tremendously. It helps the patient be more comfortable, be more empowered because they understand their disease process."

Important as Anita's one-on-one work has been, she knows she is only one person. To take the stories of her "Pink Deafies" to a wider deaf audience, she has a new project. "With this project, we wanted to make, you know, like a DVD, CD's, video-type, VHS-type things, out of all the Pink Deafies survivors."

She turned to the Cancer Foundation founded by fellow cancer survivor and Kare11 Sports Director Randy Shaver. She asked for $5,000. The Board voted to give her $10,000. Randy recalled her dynamic presentation. "When she left the room, I think we all looked at each other and said, that's a slam dunk and it was! It was the easiest money we have given away since I've sat in those meetings." (Hear more from Randy about Anita's request in the video link above.)

The video project is now underway. Without speaking an audible word, Anita Buel has become a loud and vital voice for the deaf community.

By Allen Costantini, KARE 11 News

© 2007 KARE TV