Pink Deafies provide support during cancer battles

Fresh off of its showing at the Twin Cities Film Festival, Signing On: Stories of Deaf Breast Cancer Survivors, Their […]

Fresh off of its showing at the Twin Cities Film Festival, Signing On: Stories of Deaf Breast Cancer Survivors, Their Families and the Deaf Community will be shown on Twin Cities Public Television this month. Director Barbara Allen’s documentary shares the store of a group of deaf breast cancer survivors who are known as the Pink Deafies.

The film provides a glimpse into the diversity within the deaf community through the stories of five women and follows the inspiring story of Anita O’Hara Buel, a two-time cancer survivor and founder of the only cancer support group for deaf women in the country, the Pink Deafies. The film gives historical perspective to the problems that people who are deaf face in accessing the health care system. The Pink Deafies members struggle with communication in the hearing-dominated, health care system, where patient/provider communication, Communication is vital and can mean life or death.

During filming, Buel and her family unexpectedly learn the real truth of her prognosis some 25 years ago and also must face the realities of a previously unknown genetic condition that could affect other family members. (Sadly, her sister has also been found to have breast cancer and recently went through treatment.) United under the banner of a quilt, the Pink Deafies meet monthly to offer support to one another, to plan educational conferences, and to discuss how to reach out to more women who might benefit from the group’s work. In this way, the Pink Deafies are not like any support group in the hearing world.

Because they are members of a close-knit community, the women’s commitment to the support group and to each other lasts for years, often a lifetime. The quilt is the centerpiece of the group. When a new member joins the Pink Deafies, she is asked to sign her name to a quilt square. The signing of a person’s

name is followed by food and socializing. It marks the beginning of that person’s journey to health and wellbeing. If a member dies, the quilt is displayed at the funeral (with the family’s permission). If a member is diagnosed a second time, they find special ways to offer support.

Buel, a founding member of the Pink Deafies, is a trained Community Health Worker (CHW) and a survivor of breast and ovarian cancer. She functions as a patient navigator for survivors of cancer and their families. Buel’s family, the O’Haras, is a longtime St. Paul family, with roots in the Merriam Park neighborhood.

Buel’s father, John, was a great boxer who once sparred with Gene Tunney. The family name was originally Ehrlich and the neighborhood legend is that it was much better to be an Irish boxer than a German one, so the family name was changed to O’Hara.

Twin Cities Public Television will air the program on channels 2.1 and 2.2. On Channel 2.1 the show airs at 11 a.m. Sunday, Oct. 23. On Channel 2.2 the show will air at 8:30 p.m. Friday, Oct. 28; and 2:30 a.m., 8:30 a.m. and 2:30 p.m. Saturday, Oct. 29.

 

Would you like to make history? Access Press is interested in reader submissions for the monthly History Note column, to compliment the articles written by Luther Granquist and other contributors. Submissions must center on events, people and places in the history of Minnesota’s disability community. We are in interested in history that focuses on all types of physical and cognitive disabilities, so long as the history has a tie to Minnesota. We are especially interested in stories from Greater Minnesota.

Please submit ideas prior to submitting full stories, as we may have covered the topic before. Past History Note articles can be found on www.testing.accesspress.org Contact us at access@testing.accesspress.org or 651-644-2133 if you have questions.

The History Note is a monthly column sponsored by the Minnesota Governor’s Council on Developmental Disabilities, www.mncdd.org and www.partnersinpolicymaking.com  

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