The Buzzz April, 2009

Last week, I spent an afternoon with an informative braille volume that could very well save my life and will, at the very least, leave me better informed about a disease that reportedly strikes one out of every 13 American women, breast cancer.  The book, which came to me at no cost, via Free Matter for the Blind postal delivery, was published in braille by National Braille Press (NBP) of Boston, MA, in October, National Breast Cancer Awareness Month, due largely to the efforts of a woman who is blind who is recovering from the disease.  That woman is Sue Ammeter, a long-time advocate on behalf of people with disabilities who lives at the edge of Puget Sound in Washington.

Sue says she never thought much about cancer before she found the lump in her breast in October 2007.  Of course, she knew about the frequency of breast cancer, especially among women over 50, that's why, on a night when restlessness deprived her of easy sleep, she was following the routine of breast self examination.  When she found the lump, she fought the urge to ignore it and, the next morning,  scheduled an appointment with her doctor.

A week or so later, she was at the imaging center, getting the mammograms - there were two - and, soon after that, the biopsies.  After the samples were sent to the pathologist, Sue's doctor went on vacation.  When she left, she left instructions for her office to call Sue with the results, but there was some mix up, and no one called her.  A week after that, Sue was talking to another doctor who thought she had been told. He inadvertently told Sue about the pathologist's  finding.

"There's no point in putting off making your appointment with a surgeon," he said on the phone.  "You know your result, and the sooner you schedule surgery, the better."

"Surgery?" Sue thought.  "For me?  I have cancer?  Breast cancer?  This can't be happening."

But, it was happening, and Sue began to try to find out all that she could about the disease, and the options that were available to her.

"I got on the phone, and my husband got on the phone," she says, "And we called the American Cancer Society and the National Cancer Institute, and what they said was that they had lots of publications but nothing in braille."

"They said, "You can go up on our web site.  Everything is there."

And, lots of things were there, but most were downloadable as files in PDF."

Portable Document Format, known universally by its acronym, PDF, the darling of so many online publishers, is not the darling of people who use screen readers to access information on their computer screens.  Because the accessibility option is not a default option when PDF files are created, many publishers have no idea that what they are making available via the PDF format is often totally inaccessible to people who access the internet with screen readers.  Sue told me that, over the next year,  several good friends spent hours converting PDF files to document format in MSWord, so she could read them on her own.

"And that was a wonderful thing," she says.  "Without people like these, who went out of their way to make information accessible to me, and without the support of friends, old and new, who had gone through the breast cancer experience themselves or cared for friends and family members who were undergoing treatments, and who spent hours and hours sharing what they knew, I might have felt completely at sea."

When she checked, she found that the National Library Service for the Blind and Physically Handicapped (NLS) did have some Talking Books related to breast cancer available, but the most recent book on tape had been published six years earlier, and it came on seven four-track tapes.  That's lots of hours of recorded information, and it's not easy to search through spoken information on tape for exactly what one might be looking for, and it's virtually impossible when using the NLS tape format to tag and mark text for future reference.

Sue has been a braille reader since she was six years old.  In the same way that printed publications allow people who can see to browse, read, study, re-read and make mental and written notes about a particular topic, braille allows someone who is blind to accomplish the same tasks, independently.

Sue says that, before she got her diagnosis, she knew virtually nothing about breast cancer.  No one in her immediate family had ever had cancer, and over the next year she met lots of people who had or were struggling to defeat the disease, but it was particularly frustrating to her that there was no information that she could access on her own terms without calling on other people for help.  One day, after the lumpectomy, and the mastectomy, in the middle of the chemotherapy on a morning when the side-effects were manageable, Sue called National Braille Press and spoke to her long-time friend, Kimberly Ballard, who is NBP's Director of National Marketing and Community Relations.

"Am I right," she asked, "That you don't have any books about breast cancer in braille?  Or even any books about cancer?  Why not?"

Kim said there were no titles in NBP's sales catalog on the topic of cancer,  and that She and others at NBP would work with Sue to remedy the serious omission.

Kim recalls, " NBP has been brailing three health-related periodicals for the National Library Service's lending program, for a number of years.  We had done some research on independently producing health information in braille but had yet to act on it. Funding was certainly one of our concerns.

After we spoke to Sue about her experience, we renewed our efforts."

While Kimberly went to work finding an informative publication that NBP could convert to a braille volume and distribute for free, Sue set about contacting organizations who might be willing to fund such a publication.  Sue has been a member of the American Council of the Blind (ACB) and her local state chapter of that consumer and advocacy organization, Washington Council of the Blind for many years.

"I know I can always find whatever support I need from my friends in ACB," Sue told me.  "They have been a lifeline for me more times than I can count."

Through her long-standing connections with the Washington Council of the Blind, Sue had been asked to serve on the board of a charitable organization, the Ruth Schuman Charitable Trust.  The mission of the trust is to assist with projects that benefit people who are blind.  When Sue presented her proposal to the board, the vote was unanimous in favor of providing the funding to publish "For Women Facing Breast Cancer," in braille.  After the book came out in October, National Braille Press produced a second book, "After Diagnosis: Prostate Cancer - Understanding Your Treatment Options," which will help people who are blind who are coping with prostate cancer.  Publishing 500 copies of each book cost $18,000, and the funding for both came from the Ruth Schuman Charitable Trust.

When I asked how NBP actually chose the book(s) they published, Kim explained, "We sought to identify a concise publication on both breast cancer and prostate cancer that dealt with issues most people face after diagnosis and that had been published by

a credible organization.  We decided to focus on these two types of cancers because of their high rate of incidence.  We asked Sue about what types of information, based on her experience and her conversations with other cancer patients, would be most helpful."

"Diane Croft, our Vice President for Publishing and Market Opportunities, and Tony Grima, our Marketing Manager, researched possible publications that met our criteria and that made information available in a concise format.  Print books that are produced in braille can often be large and cumbersome (the last Harry Potter novel translated into 8 braille volumes!) and we wanted something that a blind person could bring along to doctor's appointments to use as a reference guide.  The breast cancer publication has a list of questions to ask your doctor after your diagnosis that we, and Sue, thought would be especially helpful to have in braille."

Kim explains, "Our pricing policy is that we charge the same price for braille publications as their print equivalents.  Since both these cancer-related publications are given away free of charge by the American Cancer Society, we also give them away free to our braille readers."

Sue says that it was not a quick process to get the book published in braille.  But, it was a project that helped to keep her going.

"And, once I had located the funding," she explains, "Kim and the team at National Braille Press were just as eager as I was to get the book into production."

Now that the two braille books are out, and available to anyone who is blind and contacts National Braille Press to order them, free of charge, Sue hasn't stopped advocating for accessible health care publications.

"We need them in large print," she says.  "And in audio formats too, because, those of us who are braille readers are a minority in the larger blind and visually impaired population, many of whom   may have come late to vision loss, or who can see well enough to read large print, or who, for a variety of other reasons, just haven't acquired the braille skills."

"At first," she says, "I was kind of stymied about which way to go to get the publications in large print or an audio format. Then, in early November, I gave a presentation at the (ACB) Western Leadership Training Conference.  I talked about the process of making the books available in braille, and, on the spot,  two people contributed $1300, to make the books available in large print and on audiotape."

Meanwhile, Sue and NBP are talking about making the books available in a digital audio format, and Sue is planning to contact BookShare, a kind of legal "Nabster" that allows people who cannot read print to access and share with one another scanned, digitized  text files, about making the books available in DAISY and electronic braille.

Now that she's come through the surgery, and the chemotherapy, and the radiation, and is, halleluiah, cancer free, I asked Sue how it was for her, as a person who is blind, dealing with the medical professionals and all the various treatments.  She says that everyone who worked with her, the surgeon, the oncologist, the doctors, the nurses and the nurse practitioner who managed her case, all of them were wonderful.  The most difficult thing for her, other than the lack of accessible information, she says, was the endless collection of forms, several for every new doctor, every new medical facility, every new treatment and treatment nuance) that required filling out.

"I am lucky that I have a husband who can see and can do this," she says.  "It must be extremely difficult for someone who is alone."

She told me that her nurse practitioner was quite apologetic about not being able to hand her any information in braille.  But, she told Sue that she could bring a recorder to their appointments.  She did, and the nurse practitioner summarized every pamphlet for her, and answered every question, while Sue used her Victor Reader Stream to record the information.

During the chemotherapy, she needed to take her temperature every day.  She found a talking digital thermometer through her community's services for the blind agency.  Later on, a new medication came in individual sealed packets that were impossible to open.  When she mentioned her problem finding the tab that opened up the pill-sized packets at a support group meeting, she found that the difficulty was not uniquely hers because of her inability to see the tabs.  Nearly everyone was having the same frustrating experience.  The solution for all of them was to write to the drug company and ask the company to give pharmacists permission to sell the drug in standard-issue pill bottles.

There were some aspects of the post-surgery recuperative period, she says, that would be very hard for a person who cannot see and who doesn't have someone who can help.  But, I know people who have been able to call upon the Visiting Nurses Associations in their communities, and so, even though they were blind and living alone, they could manage that post-surgery period.

What's next for Sue?  Cancer free after the surgery, the chemotherapy, the radiation, and receiving the support of friends, old and new, and neighbors she didn't know very well until after the cancer struck, her mom, and her husband, and her dog, Buddy,, and a breast cancer support group, and all the medical professionals who were there for her, Sue is feeling like a new woman, ready to begin again enjoying her retirement from a daily job, and ready again to work on projects that will make the world a better place for everyone with a disability.  It has been her determination and her advocacy that have carried her from a point of having no idea where to turn, to a place of strength and hopeful resolve.  Blindness never defeated her, and neither did cancer, and she is determined to continue to work for accessible and available information for people who are blind, so that neither blindness nor cancer will defeat them either.