Braille Monitor               January 2024

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Reflections on Four Decades: Celebrating Parents of Blind Children in the Organized Blind Movement

by Barbara Cheadle and Carla Keirns

From the Editor: On July 4, 2023, NOPBC President Emeritus Barbara Cheadle addressed the NFB National Convention. She looked back on the founding and growth of the NOPBC and shared her hopes for the future of blind children in the United States. Her remarks were immediately followed by then-President Carla Keirns. These remarks are taken from the convention issue of Future Reflections, a publication of the American Action Fund for Blind Children and Adults edited by Deborah Kent Stein.

Barbara CheadleBarbara Cheadle: When I sat down to write this speech, I remembered what Dr. Kenneth Jernigan told me when I asked him for guidance in writing one of my first public speeches. I was totally taken aback when he said, "Be entertaining." And he was right! If you can't entertain, no one's going to listen long enough to be informed or inspired. Those of you who have been around long enough to remember Dr. Jernigan will recall the jokes he told at the beginning of every recorded Presidential Release. They were hopelessly terrible, terrible jokes—real groaners! The worse they were, the more we loved them. We looked forward to them, and within minutes, we were relaxed, happy, and eager to be informed and inspired by the rest of the release.

So, in honor and appreciation of all that Dr. Jernigan taught me, here's, I hope, a good groaner to get us started today.

What kind of shoes do frogs wear?

Why, open-toad sandals, of course!

My husband John and I adopted our blind son, Chaz, in 1980. He was two years old when we met him at the airport with his escort from South Korea, and I fell instantly, irrevocably, in love. He was perfect. We were living in Omaha, Nebraska, at the time, and I had a job with the local Red Cross.

Shortly after the adoption, a job came open in my department that I was positive could be done by a blind person. What an opportunity it might be for the right blind applicant if we could get the job description out through the NFB. I was very excited when I went to my boss to lay this suggestion before her. But as soon as she heard the word blind she shut me down. Her husband, she said, had limited vision. He couldn't drive, or read print, or cook, or clean, and most certainly he could not hold down a job.

I was stunned. All I could think was that in twenty years or so, it could be my newly adopted, happy, beautiful son who, without ever knowing it, had a door of opportunity slammed shut against him. I locked myself into a nearby bathroom stall and sobbed. I knew then that it wasn't going to be good enough to raise a competent, confident child with good blindness skills and a strong work ethic. If I didn't do something to help change the world, he might never be given the chance to live the life he wanted.

By the way, my husband John and I are both sighted. In the mid-1970s, before we had a child or even were married, we worked for the state rehabilitation agency for the blind in Nebraska. We joined the NFB because we wanted to learn more about blindness from the real experts. By the time Chaz joined our family, we had been NAC-tracking, attended state conventions, and a national convention. I had even helped organize and conduct a statewide seminar for parents of blind children. Very few parents showed up at that seminar, and those who did looked sad and desperate. They clearly didn't know what to make of all these blind people, and they were too frightened even to ask questions. I remember thinking, if only there were some way NFB members could get invited into their homes so they could get to know blind people and be comfortable around them! Maybe they could start to learn that it really is okay to be blind.

Fast forward to the 1981 NFB Convention. At that convention, I approached the NFB Parental Concerns Committee, most of whose members were blind parents. I suggested that we start a newsletter for parents of blind children and volunteered to be the editor. I had a vision for the magazine. Of course, it would republish some classic NFB speeches and articles, but also it would seek to generate and publish new material from blind adults and parents and teachers of blind children. Teachers such as Doris Willoughby could share practical tips and strategies that were deeply embedded in the NFB philosophy of positive attitudes about blindness.

As soon as the first issue of the newsletter came out, Dr. Jernigan contacted me to let me know that henceforth the national office would handle the publication. I was to continue working as editor on a volunteer basis from my home in Jefferson City, Missouri. And then YOU, the leaders of local chapters and state affiliates, got to work. There was no internet or social media in those days, but somehow affiliate leaders such as Joanne Wilson and Gary Wunder got their hands on mailing lists of parents in their states. Slowly, issue by issue, the newsletter started showing up in mailboxes around the country.

As you know, that newsletter was later renamed Future Reflections, and, under the capable editorship of Debbie Stein, it continues today to be invited into thousands of homes of parents and teachers nationally and globally. If you haven't read the recent special issue, “The World of Work,” you must. I read it on the plane on the way to convention, and my heart soared with gladness at the inspiring stories.

But the magazine alone wasn't going to be enough. Dr. Jernigan had a vision that encompassed so much more than mine. His was a vision of blind people working side-by-side and hand-in-hand with sighted parents to bring about cultural, legislative, educational, and deeply personal changes in attitudes and expectations. Those changes were required if blind children were ever to have the opportunities they needed to live full, productive, satisfying lives as adults. To achieve these goals we needed parents to be engaged as fully participating members of the Federation.

Historically, very few sighted parents of blind children had joined the organization. Mostly, sighted parents didn't even know about the NFB. If they did find out about us, the information often came with warnings from teachers, rehab counselors, and even some eye doctors, telling them not to get mixed up with that "radical" group of blind people.

To make his vision a reality, Dr. Jernigan sent an invitation to Doris Willoughby, Ramona Walhof, Susan Ford, and me. "Come to Baltimore," it said. He wanted us to sit down with him and write a constitution for a new NFB division, a division for parents of blind children, to be presented and approved at the upcoming 1983 NFB Convention in Kansas City, Missouri.

Why did he choose us? Ramona was a powerhouse national and state leader within the NFB, and she had worked closely with Dr. Jernigan in Iowa. Doris Willoughby was a sighted teacher of blind students and the spouse of NFB member Curtis Willoughby. Curtis was one of the first competitively employed blind engineers in the country. Doris was already well-known for her books (published by the NFB) about the education of blind children. Susan Ford was a blind foster parent of a blind child. She was the chairperson of the Parental Concerns Committee and an active officer and leader in her state affiliate. All of us, including me, had experience organizing local chapters and building membership.

Dr. Jernigan had plenty of experience with writing affiliate constitutions. Most of the details and decisions were not difficult or controversial—except for one. The most important decision we made at that meeting was positively to affirm the right of sighted parents to run for all offices in the new parents' division, especially the presidency.

This decision was a big deal! In the 1980s many members of the NFB could still remember historical attempts of sighted professionals to take over and run—for their own purposes—groups originally organized by the blind. The NFB is an organization of the blind, not for the blind. Therefore it is fundamental that the office of the presidency at the local, state, and national levels be filled by a blind person. This decision was an acknowledgement that sighted parents of blind children had common cause with the organized blind. As the guardians, the spokespersons, and advocates for our blind children, we were natural allies and partners.

That was forty years ago. What has the National Organization of Parents of Blind Children, the NOPBC, together with the NFB, accomplished in the past four decades?

In 1982, the year before we organized, the NFB started selling canes sized for children—really, really young children, even toddlers. The NFB was the first entity, agency, or organization to do so. The NOPBC had its first goal and program ready to go in 1983: get those canes into the hands of kids. We started by distributing the video "Kids with Canes" from the Nebraska Services for the Visually Impaired. We distributed that video across the country. For years, Doris Willoughby stocked copies of the video and mailed them from her home.

Next, we started giving away kid-sized canes to children who came with their parents to our NFB National Conventions. Once blind kids got canes in their hands, they refused to give them up. We changed forever the educational practices concerning white canes for children.

In 1984, the NOPBC voted to sponsor a national Braille reading contest for children in kindergarten through high school. Soon parents and teachers started to complain that the youngest kids were reading so much, so fast, that they were running out of Braille books to read for the contest. We even heard suggestions that we should drop the contest categories for early readers! Of course we didn't do that. Instead, we pressured the Library of Congress to increase the number of Braille titles for children. We went to organizations such as National Braille Press, Seedlings, and the American Action Fund. We asked them to provide us with more Braille books for early readers, and they did. When the contest established a category with prizes for children with additional disabilities, the participation of schools for the blind skyrocketed. In the 1990s students who participated in the contest formed an important cohort of research subjects for the groundbreaking Braille literacy research conducted by Dr. Ruby Ryles.

For almost thirty years, the NOPBC's Braille Readers Are Leaders contest proved that Braille-reading kids can be competitively literate with their sighted peers. After a hiatus, the contest is back with a new sponsor and an updated structure—and it is more vibrant and vital than ever. Thank you, Debbie Stein and Sandy Halverson!

Toward the end of the decade, in 1987, NOPBC parents in Minnesota were instrumental in helping the NFB affiliate in that state pass the first Braille bill. Many states followed, including Maryland. Ten years later, a Braille literacy provision was included in the reauthorization of IDEA, the Individuals with Disabilities Education Act. Despite legislative progress, the struggle to make Braille the default for blind and low-vision children still continues, but we have not given up.

There was an enormous growth spurt in the decade of the 90s. In partnership with O&M instructor Joe Cutter, we established the annual Cane Walk at convention. We created and distributed numerous videos for parents, including "It's Okay to Be Blind," "White Canes for Blind Kids," and a six-video set, "Avoiding an IEP Disaster." We published The Bridge to Braille, an instruction book for educators co-authored by Carol Castellano.

In the era of the 2000s, we established what has become one of our most beloved convention programs with a grant from UPS—the Braille Book Fair. By this time, our original parent leaders were beginning to age out as their blind children grew up and left home. In 2006, under Carol Castellano's guidance, the Parent Leadership Program (PLP) was established.

From that time to the present we have done so much more! We have a website and a Facebook presence; we have more books, articles, and videos. We established Braille Reading Pals, an early literacy program for preschoolers. We host IEP workshops and Braille and technology workshops for parents.

Our most important program is the one the NOPBC voted to establish in 1984. At that meeting, we unanimously voted to hold a seminar for parents every year at all future NFB National Conventions. The seminar gradually expanded to become a multi-day conference embedded within the NFB Convention. I did a quick count this year, and NOPBC had thirty-five or more named programs, workshops, and activities listed in the convention program, with more than one hundred volunteers behind the scenes making all those programs happen.

Of all our successful NFB programs, how can I assert that this one is the most important? I make that assertion because parents need you—you, the members of the NFB. We need to meet you, talk with you, laugh with you, cry with you, debate with you, collaborate with you. We need you so we can imagine together, with you, what the future might be for our blind children. And when we are new and a little raw about this blindness business, we need your understanding, your love, your patience, and your sense of humor to help us get over our fears and awkwardness. We need you to be models, not only for our blind children, but for us. You are a reflection of what the future can be for our children.

And as we sighted parents grow in our understanding of blindness, you need us. We demonstrate for each other, and for the world, what it looks like when sighted people accept blind people as equals.

The pandemic has upended so many things in our country! It has had a profoundly negative impact, especially upon the educational and social development of our children. More than ever, we and our children need to be in community together, in person, with you, our blind colleagues. The internet and social media present wonderful opportunities to us for the spreading and sharing of the NFB philosophy about blindness. Yet there is no substitute for personal, one-on-one connections. These connections can only bubble up from the grassroots—from our local chapters, our state affiliates, and our divisions. You are the key to our continued progress and successes.

Remember the joke I told at the beginning of this speech? I found it on a plaque in a little nature center near where Chaz and his family live. Just a few weeks ago, my husband, John, read it with our ten-year-old grandson. Our son Chaz was chasing down and corralling our eighteen-month-old grandson, who runs as if he's competing for a place on a high-school track team. Chaz is a great dad. He brings home a paycheck, changes diapers, and walks his son to and from the bus stop. He shares with his wife all cooking, laundry, and house-cleaning duties. But he still finds time to have fun with his hobbies—photography, ham radio, woodworking. And he and his wife are active in a local committee to make their community more walkable, safer, and accessible to pedestrians. I've never asked him if he is living the life he wants, but I think I know the answer.

Carla KeirnsNOPBC President Carla Keirns: I didn't tell Barbara how old I was when she started the NOPBC. Should I keep it a secret?

My older sister is not blind. She has autism, and she was born in 1967. For those who can do math, my young son can help us out. Five years later, what year is it? 1972. So in 1972, my mother took her five-year-old to the local school to enroll her in kindergarten. And what happened? They turned her away at the door.

Now, my mother tells the story that they said, "It's too bad you taught her that she's five years old. If she didn't know, then it wouldn't be so bad."

It is impossible for me to imagine that an educator really could have said that! But when you and I talk, when people in this room talk about what we are facing, about the challenges we have today, a lot of times we get discouraged. We think, you know, we've been fighting this fight for decades, and it just doesn't seem like we're making progress.

Making progress? You all know we are!

The next year they had to take my sister. They didn't know what to do with her, though. Six years later, my family moved from New Jersey to New York, and my mother decided that my sister needed access to the general educational curriculum. They had her stuck in the resource room for six years.

My mother thought about this, and she decided that the best first strategy would be not to tell them. Yeah, that worked for, about, like the morning. My sister had moderate autism, and it was pretty clear that there was something else going on. So my mother decided that the hill she was going to die on was that my sister deserved an education.

Four years later, my other sister had a visual impairment and dyslexia. She failed the first grade. Twice.

My mother says that when they went to sit in the meeting to decide what to do next with her now eight-year-old—with the vocabulary, by the way, of a sixteen-year-old—the first-grade teacher was maintaining that she was not smart enough to learn to read. The plan was to keep her in the same classroom with the same teacher and the same instructional method for a third year!

So, one, my mother is a force of nature. Two, she was raised a southern debutante. Three, her first job in the mid-1970s was as a chemical engineer for Exxon. So she had to decide ... Southern skills, Yankee skills? Debutante skills, chemist skills?

Cry, argue. Cry, argue.

She went with cry. And she got my sister placed in one of the first twice-exceptional classrooms in the country, what at the time was called "gifted handicapped." That was the year of the first NOPBC convention. And we have come so far! The reason we have come so far is that my mother was on her own. And I have you. We have the laws that you fought for. We have the teachers you have educated. We have the infrastructure that you have built and the other infrastructure that you have torn down. We have a future.

When my son was diagnosed as blind, we found ourselves in the conference room of a small library on Long Island, New York. We went to a room, and there were twelve blind adults. And there we were with our little baby boy, who was five months old. And he gave a high five to all the grownups, and everybody who wanted to hold the baby got to hold the baby.

Then my husband and I sat down in this room full of blind adults, and they were polite. They didn't say, "Why are you here?" But they said, "Hey, can you introduce yourselves?" We explained that we were sighted and our baby was blind. And almost on the verge of tears, I said, "We're here because we don't know what he needs, and we need help."

The president at the time of that chapter meeting was David Stayer. So you all can imagine how this went. David said, "You don't worry about that. We know what he needs. Your kids are our kids."

So our plans for the NOPBC are to continue to do what you do so well. My son has been to Albany for a state seminar. He's been to Jeff City [Missouri]. He's testified before the Education Committee at the Missouri State Legislature. After Gary Wunder, my son Russell spoke at the state legislature, and the special education administrator who was there to testify against our bill cowarded out and didn't talk.

We're about educating parents, advocacy, partnerships, mentorship between blind children and blind advocates and all of you. But I have a problem with advocacy. Advocacy is only necessary when the system doesn't work on its own. What I want for all of us is to build a world in which we no longer need the level of advocacy that we need today.

Thank you to everyone here for being our partners and supporting our kids. Our kids truly are your kids. Thank you!

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