Braille Literacy: An Early Disability Rights Activist Discusses the Paving of the Path

Twenty-Six years ago, Jeanne Marie Moore (57, Eugene Oregon) stepped off of a North Berkeley train platform and into history. Though the fall had broken three ribs, she managed to get back on the platform just before the train pulled in. The ensuing court battle led to detectible edge protection on all Bay Area Rapid Transit (BART) stations, which have decreased accidents among blind, visually impaired and elderly travelers. It wasn't the first or the last time this private practice clinical therapist, musician, devoted volunteer and social activist found herself in the midst of the long battle for civil rights, equal access and social justice for Americans with disabilities.

Jeanne Marie was born blind as a result of Retinopathy of Prematurity (ROP) into a large and dysfunctional California family. She had four brothers, two sisters, an overburdened father and a very abusive mother who became terminally ill when Jeanne Marie was in seventh grade. She has had fourteen surgeries throughout her life – none of them to attempt to restore her vision, and she has been hit by cars four times.

"My friends," she quips," tell me that by all rights I should stay home."

Like many of us, Jeanne Marie grew up juggling mixed messages, fighting to hold onto the positive and keep the demons at bay. On the one hand, her parents made sure she learned Braille early. She was mainstreamed in a public school with a full-time resource room teacher and regular Braille instruction. Her mother learned Braille as well and became a transcriber, helping Jeanne Marie and others. The family also had a piano and Jeanne Marie learned to play as a child. Music theory made sense to her, and she later taught herself to play guitar by listening to recordings and creating Braille chord charts.

"Music is the corps of my universe," she says, "and Braille, of course."

On the other hand, there was the abuse. Also, she often stood up for her siblings, placing herself in the midst of violent fights. In addition, her parents drummed into her their opinions about what blindness meant. These were -- to say the least -- unhelpful. Her father's perspective was that it was her job to make everyone comfortable with her as a blind person. Worse yet, her mother believed that everything Jeanne Marie, or any blind person for that matter, "achieved" was based on pity and people being nice. She told her daughter that she would probably be alone all of her life.

Jeanne Marie's teen years brought little time for extracurricular activities. She and her sisters had to run the household.

Despite these emotional hardships, Jeanne Marie is grateful that her parents were able to provide her with many opportunities including a college education. She earned a bachelor's degree in social science from California State University, Sacramento, and a master's degree in social work from the University of Denver. She and her biggest supporter Carlos have been married for twenty-two years.

"One of the only places in my life that I have had stability and safety is in our marriage," she says, "He is the wind beneath my wings. I never felt that kind of support anywhere else."

Jeanne Marie, a singer and guitarist who until recently performed in the Eugene area with a group of blind women called Raisin' Cane, reads Braille aloud fluently and loves to read in public. She is also active in Eugene's Unitarian Universalist Church and the local interfaith ministry to the homeless. She serves on Eugene's Human Rights Accessibility Committee and Bicycle Pedestrian Advisory Committee. Her work as a member of the Help America Vote Act, Accessible Voting Committee through Oregon's Office of the Secretary of State earned her Oregon's Golden Pioneer award in 2006.

"It is really an honor to get that from the Secretary of State for my work," Jeanne Marie says, "I was really shocked, I don't do it for the awards, I am totally committed to everyone having access to the vote."

Early Social Struggles

Despite the fact that Jeanne Marie was reading Braille by the time she entered first grade and that her school was ahead of the curve in terms of mainstreaming kids with disabilities, her education wasn't always smooth sailing. For starters, she had an undiagnosed learning disability, which she eventually figured out herself in college. Jeanne Marie has a problem with reversing things. Like print, Braille has symbols which are mirror images of each other. As a result, it took her longer to complete homework.

All of the blind children in Jeanne Marie's school district went to the same school. There was only one class period for Braille, and if she didn't get it, they pulled her from music.

"That was punishment beyond description," she remembers.

Reversal is an issue which affects her orientation and mobility as well.

"Getting back," she explains, "is harder than getting there. I spend more time trying to figure out cardinal directions when I am out somewhere. Some folks can just figure it out. I have a hard time and need to remember landmarks, to remember which way is north, for example. This totally embarrasses me."

ROP is the leading cause of blindness in children both in the US and worldwide. Nowadays, the correlation between ROP and other severe disabilities, such as cerebral palsy and autism is common knowledge. Other learning disabilities such as dyslexia and less severe forms of autism are also coming to light.

Furthermore, Jeanne Marie's earliest efforts to change what it means to be blind occurred in school. Her experience with home economics demonstrates not only in indomitable spirit but the ability of that spirit to expand the horizons of others around her.

Sewing, as the school attested, was not for blind students. In seventh grade, though she was four foot ten and weighed only sixty pounds, Jeanne Marie was not about to be told what she could not do. Jeanne Marie wanted to sew. Her mother had been making her clothes for years and taking over that responsibility seemed like a natural progression.

When one of the teachers, Mrs. Oliver, witnessed Jeanne Marie's "good-luck-getting-me-out-of -class" attitude, she liked her spirit so much that she offered to help her. Their only nod to adaptive equipment was a standard needle threader and a piece of cardboard to use as a sewing machine guide. Nonetheless, Jeanne Marie made skirts and dresses that were good enough to wear in public. Nowadays, her sewing is limited to hemming clothing by hand.

"I've thought about using a machine again," she says, "but it would mean really slowing down and being very careful."

In college, Jeanne Marie wanted to do community service. There was an established internship which placed students in a nearby prison and she wanted to sing there. One of her friend's told her that a certain professor had said, "A blind girl can't work in a prison; it just can't happen." The professor's dismissal motivated her to make it happen. She started singing in the prison in the spring of 1974.

Her activism soon took on a new dimension. She had been hearing rumors that some of the guards were raping female prisoners. When one assaulted her, she spoke out. The other people who had noticed the problem were not willing to back her up, so she was, as she says, "really out there on my own."

The investigation that followed uncovered a serious pattern of abuse. Several guards had to leave. One was transferred and another forced to take early retirement. Jeanne Marie received death threats from one of the guards.

Jeanne Marie wanted to join the Peace Corps. They wouldn't accept her due to her blindness, but that didn't stop her.

"The personal is the political, and we are all social change agents," says Jeanne Marie, who has long since had an activist philosophy.

The service that the Peace Corps rejected was accepted by the Jesuit Volunteer Corps. Jeanne Marie worked as a music teacher in a special education school on a Navaho reservation near Window Rock, Arizona for four months in the fall and early winter of 1974-1975. After the death threats, being on the reservation provided her with a safe haven.

After college, in the fall of 1975, she returned to her volunteer job at the prison. Standing up for herself was not easy. Jeanne Marie readily admits to being afraid.

"Which do you want to be committed to," she asks, however, "your chance or your fear? Bring it with you but don't let it run your life."

Not until she was in grad school did she get the external re enforcement she needed to squash the erroneous notion about achievements by blind people that her mother had instilled in her. With a 4.0 grade-point average, she asked her advisor, "Why are people pitying me to that degree?"

Her advisor explained that no one was "giving" her good grades, that she was earning them and that she had been misinformed. As has so often happened in Jeanne Marie's life, this positive affirmation was quickly followed by tragedy.

"My family," she recalls soberly, "is filled with unnecessary preventable death, including the suicide of my brother not long after that comment."

The Rocky Paths of an Accessibility Pioneer

Nowadays, Americans take accommodations for people with disabilities for granted. Wheelchair ramps, handicapped parking, Braille markings on restrooms and elevators as well as university resource centers for students with disabilities, however, are rather recent additions to the public landscape. Laws like the Rehabilitation Act (1973), the Education for All Handicapped Children Act (EHA, 1975, which was the precursor of the Individuals with Disabilities Education Act of 1997/2004) and the American's with Disabilities Act (1990) laid the legal ground-work for equality. Real world changes, however, have come slowly and with much struggle. People like Jeanne Marie fought the early battles with institutions and governments. Unlike violations of crimes like theft, assault and murder, there is no enforcement of these laws except through personal advocacy, filing complaints and law suits.

"A lot of blind people don't understand that you don't get something for nothing," she says, "They don't understand the paving of the path."

Jeanne Marie's days as an official advocate for people with disabilities began at the University of Denver. In January of 1978, she was hired halftime to start the Disabled Persons' Resource Center (DPRC). This was a fieldwork placement for her MSW program. . After receiving her degree that June, she was hired as the Center's fulltime director, a post she held until December of 1979. The physical campus was twenty percent accessible when she established the DPRC and eighty percent accessible after eighteen months of her leadership.

The transition was not smooth. The law was behind her, but often the university staff was not. As an example, she points to what happened when the Director of Admissions parked in a handicapped parking space in winter.

"Wintertime can be life and death for someone in a wheelchair," she explains.

Her response was to write a letter expressing shock at learning of the Admission's Director's unexpected "trauma," averring that she knew she would have never taken a handicapped parking space for any other reason. She asked if there was anything her office could do to assist her in adapting to this new disability. People weren't happy with her, but they changed their behavior.

"It was not a diplomatic job," she admits.

Then, there was the school's Affirmative Action official. She argued with Jeanne Marie saying that she didn't understand why the campus's Women's Resource Center needed to be wheelchair accessible. Her reasoning? "There aren't any disabled feminists."

Section 504 of the Rehabilitation Act said that new programs had to be in accessible buildings. Jeanne Marie went to the university's president. The Women's Resource Center was relocated to an appropriate setting.

"It's astonishing," she says, "how angry people are when they have to change their routines."

Those early battles took there toll on Jeanne Marie. She has long since lost her taste for confrontation.

"I'm not like that now," she says, "I'm more mellow and kinder. I don't like those kinds of fights anymore."

Sometimes, change came after injuries. Jeanne Marie, who was using a white cane for mobility, broke her nose on a sculpture in front of the campus library. The sculpture stuck out over pavement which appeared clear at cane level. The university eventually put up a low border.

The solution to safety issues posed by the school's humanities garden, which featured four-foot deep pools that were drained in winter, came with a bit more irony. Jeanne Marie fell in one in winter. She was fortunate not to break any bones. Her efforts to get the school to construct a barrier went unheeded until an outdoor ceremony months later. The crowd witnessed a sighted school official back up and fall into a full pool. A brick barrier was soon in place.

Jeanne Marie later worked at similar disability resource centers in several California colleges. Fortunately, they all had established programs by the time she arrived, and the initial battles had already been won.

Subway Platforms & State Exams

Before Jeanne Marie's 1983 accident in the Berkeley BART station, subway platforms featured painted lines to warn the sighted public of the edge, but there was no equivalent warning for blind travelers. Jeanne Marie needed to use the Norris-Berkley station that day. She had recently used another BART station, but was concerned enough about this unfamiliar location that she asked for assistance.

"The woman at the ticket window," Jeanne Marie remembers, "told me 'You'll figure it out'."

Left to her own devices, she began to take stock of what she knew. The entrance and stairway were the same as the other station. She made the mistake of assuming that the platform was set up the same as well. The station she was familiar with had a single-edge platform. The platform at this station, however, was double-edged.

"I had my old APH (American Printing House for the Blind) four-track cassette recorder in my backpack that day," she recalls, "It was so amazing. That thing still worked after the fall…and, I landed right on it!"

Jeanne Marie learned from the ambulance driver that she was not the first to fall. At the time of her accident, 86 people had fallen off of BART platforms. They weren't all blind either; 40 were sighted.

The American Council of the Blind (ACB) took an interest in Jeanne Marie's case and filed a class action lawsuit. It took three and a half years to settle. Jan Santos, a blind Oakland resident, had also fallen, and Jeanne Marie persuaded her to sign on as a co-plaintiff.

"I couldn't have gotten through it without Jan," Jeanne Marie says, "She was the one who did all of the press conferences… She had her statements in Braille, of course."

Nowadays, truncated domes mark doorways, curbs and parking lot exits as well as train and subway platforms all over the country.

In 1987, Jeanne Marie wanted to work in California as a Clinical Social Worker. State law required that she pass an exam, but the exam was not offered in an accessible format. Under the old rules, blind applicants could not choose their own readers, and providing the exam in Braille was unthinkable.

"Once when I took the exam," she remembers, "I was in an electrical panel closet at a fairgrounds, because there was more than one blind person taking the exam that day. And, though it was a dark closet, they would not allow my reader to go get her glasses from the car."

On another occasion, Jeanne Marie had an experience which is commonly mentioned by blind people as a significant barrier. The reader provided to her may have been kind-hearted and willing, but deficits in her own reading skills caused her to incorrectly read many of the questions. This, it should go without saying, can cause blind exam takers to answer incorrectly. The errors can be enough to make the difference between passing and failing and can affect a person's entire life.

"She couldn't pronounce any social work related words," Jeanne Marie remembers, "She said 'physiotherapy' instead of 'psychotherapy' and 'group mutuality' instead of 'group maturity.' Those are just two examples."

As a result of the legal action she took, ALL of California's state exams are now accessible, and other states have changed as well. Normally, the exam is given in the applicant's format of choice.

"The last time I took the exam here in Oregon," she explains, "I had it in Braille."

Feminism and Disability

To the chagrin of the affirmative action official who believed that there were no feminists with disabilities, Jeanne Marie has long embraced feminism as well as social activism.

Her philosophy has developed through both life experiences and reading. In her senior year of college, she read "Higher Circles" by G. William Domhoff, Vintage, 1971.

"things became quite real for me," she says, "Learning about oppression, liberation and unlearning racism really solidified this, and living in two communes, one based on 'Movement for a New Society' principles did it. Reading a lot of gay literature and also Marxist stuff had an influence as well."

Jeanne Marie often mentions the Native American adage that what we do affects seven generations after us. She did not, however, acquire this philosophy from her work on the Navaho reservation. Nonetheless, she did learn something else there which has given her an appreciation not only for oppressed minorities but for the people outside of those groups who are trying to bring about change.

"I learned," she confesses, "what it feels like to be hated as a member of the dominant culture."

Jeanne Marie's work with the other co-founders of Women's Braille Press (1980-1996) filled a need for accessible information which was not being addressed by the organizations providing books and magazines for blind people. As an example of the sexist bias, Jeanne Marie points out that the National Library Service for the Blind and Physically Handicapped (NLS), which operates the Talking Book program and is part of the Library of Congress, was willing to provide Playboy magazine in Braille. Feminist magazines and literature, however, were considered "low demand" publications.

The women's rights movement was making strides, but blind women and women with other disabilities were virtually invisible. To this day, the only blind woman most Americans can name is Helen Keller, who died over fifty years ago.

Like everyone else, women with disabilities need role models, connections with others like themselves who are further along in their struggle to succeed on an equal footing with the non-disabled world. Women with disabilities are still seen as powerless and vulnerable.

"We were making stuff accessible that they wouldn't allow," she remembers, "Congress wouldn't fund material about what other women with disabilities were facing or anything about what feminism is. We did it to break the isolation barrier. When we were pushing through, it was about empowerment and safety and being seen as more than pleasure objects."

The Women's Braille Press published feminist authors, female and disability anthologies, periodicals and lesbian novels.

"It's all available now, ironically," she states, "from the FLORIDA state library for the blind."

Braille: the tool of empowerment

When Jeanne Marie was in elementary school, she sat at the back of the classroom with her Braille writer in a sound box in order to muffle the noise. In college, she took notes using the "slate and stylus." In this method, which is the traditional way of writing Braille, dots are punched one at a time, an operation which is done upside-down and backwards from the way Braille is read. She used regular legal tablets rather than the stiffer standard Braille paper. Though Braille paper holds up better over time, taking notes on lighter weight paper is easier on the wrist.

In those days, students like Jeanne Marie had to fight with professors to get book lists far enough ahead of time, so that they could get them in accessible formats before the class started. Jeanne Marie had to order her own textbooks and often didn't have them in time for the class.

Nowadays, Braille has entered the digital age. There are Braille note takers, virtually silent high tech marvels which store the Brailed information. The digital files can be either listened to or transferred to a computer as text documents. Some with "Refreshable Braille Displays" allow the user to read the document in Braille one line at a time. Jeanne Marie has one of these machines, a Braille Note, but prefers reading paper. Though there are more resources nowadays, the problem of getting educational material in accessible formats in a timely manner still persists.

Back in the sixties, when Jeanne Marie was in high school, only fifty percent of America's blind children were being taught to read and write Braille. Surprisingly, that figure looks good by comparison with today's statistics. Braille literacy is at a crisis point in America. Nowadays, only ten percent of blind children are learning it. This is leading to functionally illiterate blind adults. Illiteracy affects education and employability for everyone. According to the National Federation of the Blind (NFB), blind people who read Braille are more likely to finish high school, attain post graduate degrees and earn over $50,000 annually. Unemployment among blind adults of working age is seventy percent. Of those who, like Jeanne Marie, are working, over eighty percent are Braille readers.

Congress recognized the problem and authorized the minting of the Louis Braille Bicentennial Silver Dollar (released March 26, 2009) as part of their ongoing program which supports two non-profits each year through commemorative coins. The Braille coin, available only through the end of 2009, supports the Braille Readers are Leaders campaign: http://www.braille.org

"I always felt sorry for the kids who were not learning Braille," Jeanne Marie says, "I told them that the chances they'll need Braille are really high. We now have a bunch of people who don't know how to spell or process and retain information. I've seen people suffer because they can't figure out how to track information in a simple portable manner."

Braille is useful for many things which enable blind and low vision adults to live independently. Braille labels on medication, spices, household appliances, files of printed material and to-do lists take the guess-work out of everyday tasks and eliminate the need for complicated individual systems or constant sighted assistance.

"I LEARN and retain better in Braille," Jeanne Marie says, "If I write something in Braille I remember it even from 15 years ago."

Jeanne Marie has long been interested in the research being done on the human brain. She has signed up for every study she could, both in California and Oregon. She knew intuitively that, despite the fact that she is blind, she is a visual learner. The studies confirm this. Using Functional Magnetic Resonance Imaging (FMRI), scientists have shown that when blind people are reading Braille, the visual cortex is active. This is not the case when sighted people are tested using their sense of touch. The most recent study in which Jeanne Marie participated was for Oregon health Sciences University

Braille also makes it possible for blind people to participate fully in worship. Eugene's Unitarian Universalist Church purchased two Braille hymnals comprised of ten, large, loose-leaf volumes. The ushers remove just those hymns needed for a particular service and bring them to Jeanne Marie before worship begins.

It is because of her knowledge of Braille that Jeanne Marie is able to be an active participant in the ministries of her church. She has worked on many projects and committees, including the coordination of care for emergencies. She also participates in a ministry for the homeless.

"We provide food and spend time assisting the parents so they can have a break," she explains, "We entertain their kids. It's a community-wide interfaith effort."

The Twin-Vision (Braille and print) books Jeanne Marie uses to read to children in schools and libraries are produced by National Braille Press (NBP). NBP is a non-profit which provides books, magazines, tests and embossing services. One of their most popular publications is "Syndicated Columnists Weekly," a compilation of the work of the finest writers from the nation's major newspapers. Visit NBP at: http://www.nbp.org/

Jeanne Marie not only enjoys reading in public, Braille also helped her fulfill a childhood dream. According to one of her early teachers, blind people could never take drama, but Jeanne Marie always wanted to be an actress.

Then, in the late nineties she received her chance. Jeanne Marie was cast in the role of a blind intern in a mental hospital. Her prison internship caused her to identify with the role. The play, Deborah Kent-Stein's "Hands," was performed at a conference of the Society for Disability Studies. The playwright's concept was for Jeanne Marie's character to read her part from the Braille script.

Jeanne Marie is a strong advocate for Braille. She encourages anyone who has trouble reading print fast enough to keep up with their fully sighted peers to incorporate Braille into their lives.

"Learn Braille, number one," she advises, "even if it's jumbo Braille, learn it. If you want to have any organization in your life at all learn Braille. You don't have to read novels. You're not going to remember your own system, if you're really doing stuff. You need a system of literacy."

Whether we are blind or not, being organized enables us to do many more of the things we would like to do. Jeanne Marie, for instance, took care of a dying friend in the last years of her life. She also managed her estate after her death.

Recent Victories & Future Plans

Privacy in voting is something most people take for granted, but blind people have only recently begun to have that option. Her work to make voting accessible for all Oregonians brought Jeanne Marie a personal victory in May of 2007, when she voted independently for the first time. Oregon has a very advanced policy with regard to voting accessibility. If a person is not able to get to the polls, the polls come to them. They have tried many techniques, including different machines and voting by phone. The current system allows voters to receive ballots via e-mail. Blind people using computers equipped with text to speech software can fill out the ballot prior to printing it out. Then, they can seal it in a privacy envelope which goes in a mailer.

People with disabilities in other states are still struggling with this problem. Anyone who is having accessibility issues with the voting process should contact Jim Dickson, Vice President for Organizing and Civic Engagement, at the non-profit American Association of People with Disabilities, (202) 521-4304, or e-mail him at: jdickson@aapd.com

Nowadays, in addition to her practice and her volunteer advocacy, she has a second business, selling herbs for the Amazon Herb Company.

"The primary certified drink, Zamu," she explains, "has done wonders for skin, hair, nails, and the inside of my body as well. It is packaged like bottles of wine and apparently looks like coffee with cream in it. It has a LOT to help your immune system and I drink it every day."

As with so many things in her life, this venture has a strong advocacy component. The company's primary mission is to save acres of the Amazon rain forest and help the indigenous people continue to farm.

"We've done amazing work there," she says.

"There are more products too," she continues, "including what I've found to be the best facial care system on the planet, and I've tried it all."

Another product she recommends is Sangre de Drago, which means dragon's blood, which comes in capsules or in liquid form.

"As a liquid," she explains, "I keep it in my medicine cabinet and use it on insect bites, cuts and bruises or in my mouth if I get a sore. It's a strong anti-fungal antiviral, and I take three capsules a day without fail."

Visit Jeanne Marie's page at: Http://moore4u.amazonherb.net

Jeanne Marie and Carlos are celebrating their tenth year of living in Eugene this fall. Jeanne Marie is a member at large of the American Council of the Blind and its affiliate the Guide Dog Users Incorporated (GDUI). When she was younger and was struggling to be taken seriously, Jeanne Marie fought the stereotype of being a blind musician. These days, however, she hopes to get a chance to make a recording of her music. She is also intrigued by the idea of doing stand-up comedy.

"I am, after all," she muses, "Married to the one liner kind."

Regarding her courage, she says, "I do have courage, but it's something you choose to have once you get that courage is doing it anyway."