Future Reflections Convention Report 1997, Vol. 16 No. 3


An Education for a Full Life:  Report on Parent Activities at
the 1997 NFB Convention

The NFB Convention was a family affair for Walt and Vivian Lucek of Louisiana. Daughters Angela (with cane), Janice, and Bridget enjoyed NFB Camp while mom and dad attended workshops and meetings.
Coleen Salka of New York demonstrates Dr. Lilli Nielson's Little Room during the Blind and Multiply Handicapped Workshop.
Mildred Rivera (above), a blind civil rights attorney from Maryland, volunteered as the Youth Activities Coordinator. Mildred avows that she "had the best job at the whole Convention." Youth activities included a Red Cross baby-sitting course (above left), a treasure hunt, a dance, and a place for youth to hang out (left).
Tammy Hollingsworth of Indiana and her son, David, relax at the Family Hospitality Night.
Joe Cutter demonstrates cane techniques for the Cane Walk.
Mardi Gras spirit pervaded the Convention. A dixieland band(right) played at the opening session, and members of the Louisiana affiliate, including Carolyn Sasser (left, with mask) and daughter Angela (in evening gown), dressed in costumes and handed out traditional beads.

"If those of us who are blind have appropriate training and equal opportunity, we can get along as well as anybody else— earning our own way, having a family, and leading a regular life."
Dr. Kenneth Jernigan, Introduction to The Journey, 1993 (the fifth Kernel book).

The desire parents have for their children to have full and happy, or "regular," lives was the driving force behind the activities organized for families of blind children at the 1997 National Convention of the National Federation of the Blind.

Everyone wants a "full life." We may not be sure what it is that will make our lives fulfilling, but we never stop dreaming or striving to get it.

But what if a child is born blind or becomes blind early in life? What is the likelihood of having a "full life" then? Can a parent do anything to increase a blind child's chances for a regular life? Although the short answer is a firm, "Yes," parents need a lot more than that to make it come true. Parents desperately need both hope and particulars, the big picture and the recurring details. The 1997 NFB Convention provided healthy doses of both to about 200 family members of blind children.

The week's activities for families began on Sunday, June 29 with:

* an all-day seminar for parents,

* a field trip to a nearby children's museum for the younger children,

* a Red-Cross Baby-sitting Course for teens, age 13 to 18,

* dance lessons for adolescents and older children,

* an orientation to the hotel for teens, and

* a family hospitality night.

The morning session for the parents seminar was as packed with exciting, upbeat ideas and information about blindness as the meeting room was packed with people. A panel of blind children from ages 7 to 17 was indisputably the emotional highlight of the morning. Their well-prepared speeches (which were read from Braille notes) are printed elsewhere in this issue. The reading of these Braille speeches was the perfect lead-in for James Gashel, the NFB Director of Governmental Affairs, who came to the podium to speak about a profound victory for Braille literacy: the inclusion of Braille literacy provisions in the newly re-authorized Individuals with Disabilities Education Act (IDEA)

The rest of the morning zipped by as the audience heard from parents, professionals, and a panel of blind adults. Parents addressed the topics: "Creative Solutions to Impossible Educational Situations" and "Life is Like a Peanut Butter and Jelly Sandwich." Educators, such as Dr. Ralph Bartley, Superintendent of the Kentucky School for the Blind, made outstanding presentations on the topics, "Instructional Assistants (Aides): Help or Hindrance?" "Music Education, Not Just A Frill," and "Access to Technology: When Computer Games Become Serious Business." Another exciting event of the morning was the recognition of winners in the 1997 Braille Readers are Leaders contest.

In the afternoon parents and educators had the choice of attending seven different concurrent workshops. Two of the workshops provided in-depth information about technology and music education, and two others focused on deaf-blind children and blind multiply handicapped children. The "Blind and Multiply Handicapped" workshop featured displays and demonstrations of the equipment and materials developed by Dr. Lilli Nielsen. One lucky winner went home with one of her "Little Rooms" donated by Colleen Austin of Lilliput, L.L.C. Inc. The "Social Skills and Blindness" workshop was back again this year by popular demand. Friendships and the social skills required to get and keep them are, as we all know, among the essentials of a happy life. Literacy is also fundamental to a productive life in a modern society. The last two workshops, "The Bridge to Braille: Braille at Home and in the Classroom" and "How to Organize a Braille Storybook Hour" focused on this vital skill.

While the adults were engrossed in their activities, the kids were pursuing their own style of fun and learning. About sixty children ages 4 to 12, chaperoned by blind and sighted volunteer members of the National Federation of the Blind, went on a field trip to a nearby Children's Museum. A television news crew was on hand to film parts of this adventure for a news story about the NFB Convention.

Older adolescents, those 13 and up, had the opportunity to enroll in a Red Cross Baby-sitting Course. Twenty-three teens, more than half of whom were blind, had eagerly signed up for the course.

Carla McQuillian, who is the blind owner and operator of a Montessori pre-school program, taught the class in conjunction with local Red Cross staff. The course did a great deal to build self-confidence in the fifteen blind teens, and it helped forge friendships among all the youth who took part. The kids also had the chance to get both volunteer and paid experience as child-care providers throughout the week. Twenty of the teens volunteered as helpers at NFB Camp and many were hired by parents who needed sitters at different times throughout the convention week.

The baby-sitting course was followed by a dance workshop led by a blind dance teacher, Chyvonne Blanchard. There was no need to ask the kids if they had a good time—the laughs and squeals heard above the shuffle of feet and the boisterous music of the Macarana said it all.

But that wasn't the end of the activities for the day. In the evening Mildred Rivera, a former camp counselor and a civil rights attorney by profession, organized an evening of teen activities, including a treasure hunt designed to help youth learn about the hotel and get to know other teens in New Orleans for the convention.

Meanwhile, parents and their younger children enjoyed a relaxing evening with hot dogs and root beer at the Family Hospitality night sponsored by the National Organization of Parents of Blind Children. Carolyn Sasser, president of the Parents of Blind Children Division of the NFB of Louisiana, was a gracious hostess to the event. Her daughter, Angela (who is blind) and some of Angela's friends provided entertainment—singing accompanied by guitars—for the group.

The following morning, Monday, June 30, the NOPBC sponsored two "Cane Walks" conducted by Pediatric O&M specialist, Joe Cutter; Arlene Hill, a blind cane travel instructor from the Louisiana Center for the Blind; and other selected blind volunteers from the NFB. About 30 children in each group, plus parents and other observers, were introduced to the fundamentals of cane use. Escalators, elevators, steps, carpets, tile, big rooms, little rooms, fountains, quiet nooks, and busy corridors created an exciting learning environment—one that was further enhanced by the camaraderie of experienced and inexperienced cane users working out travel problems together.

Plenty of time was left by the end of the one-hour Cane Walk for parents and children to register for the NFB Convention, then hit the exhibit hall to take in all the latest in technology and aids and appliances for the blind. Those who were interested in becoming more informed about blindness issues also had the opportunity to observe the Resolutions Committee debate the 18 resolutions brought before it, or to attend one or more of the 10 seminars and meetings scheduled that afternoon. NOPBC also sponsored a Youth Room from 2:00 p.m. to 6:00 p.m. This space gave teens a place to "hang out" and the opportunity to meet other teens.

Tuesday afternoon, following the NFB Board of Director's open meeting, the National Organization of Parents of Blind Children conducted its Annual Business Meeting and program from 1:00 to 5:00. As usual, the keynote speech was given by this year's winner of the Educator of Blind Children Award. This year's recipient, Mrs. Deborah Prost, is especially inspirational. A blind teacher of blind children, she shared her philosophy, experience, and unique perspective with an appreciative audience. Her speech is also in this issue.

The program included an exciting presentation by Sensory Safari volunteers Lloyd Dubuisson and Ray Stroup about their new Trophy Mount Donation Program (see article elsewhere in this issue about this program). A large part of the meeting was dedicated to reports from our state organizations of Parents of Blind Children. These reports, which brimmed with enthusiasm, creativity, and vitality, are reprinted in this issue.

We also had a light side to our meeting when Daniel Lamones, a blind children's performer, showed up for a "surprise" break. He soon had us up on our feet to sing, clap, stomp, and Thuupt' (you had to be there) to some of his delightful tunes. Door prizes donated by the Maryland Organization of Parents of Blind Children added to the fun.

This year's meeting was also the occasion to announce and plug two new NOPBC products: a video, "White Canes for Blind Kids," produced by member Myra Lesser; and the book The Bridge to Braille, by NOPBC vice-president Carol Castellano and her daughter's Braille teacher, Dawn Kosman. Information about how to obtain these great new products is also printed in this issue. The meeting concluded with elections. The officers and board members for the coming 1997-1998 year are: President, Barbara Cheadle (Maryland); First Vice President, Ruby Ryles, (Louisiana); Second Vice President, Carol Castellano (New Jersey); Treasurer, Julie Hunter (Colorado);

Secretary, Martin Greiser (Montana); and Board Members: Pat Jones (Tennessee), John Salka (New York), Crystal McClain (Ohio), and Carolyn Sasser (Louisiana).

Tuesday evening (for those who weren't ready to hit the sack early) offered 10 meetings, workshops, receptions, and even a play written by Jerry Whittle and performed by the Louisiana Center for the Blind Players. Proceeds from the "Growing Up in Tennessee" (the play was based on the childhood of Kenneth Jernigan) went toward supporting the Louisiana summer training program for blind children.

Wednesday morning everything was in place for the opening of the first general session of the 1997 Annual Convention of the National Federation of the Blind. With a record-breaking registration of 3,346, the hall was crammed with just about every chair the Fire Marshal would allow in the space we had. The Louisiana affiliate welcomed the delegates with a Dixieland band which wove among the crowd playing a medley of tunes including "When the Saints Go Marching In." The band was followed by members of the Louisiana delegation dressed Mardi Gras style, throwing beads and urging folks to dance. After the band departed, the Convention got down to business. Most sobering was the announcement that Disney had decided to resurrect the old half-blind cartoon character, Mr. Magoo, in a live-action film. The Convention overwhelmingly voted to urge Disney to reverse their plans and not bring back this stumbling, bumbling character which had caused so many blind and partially blind children to suffer the taunts and jeers of classmates calling them "stupid Magoo."

That evening, the NOPBC conducted a three hour IEP workshop. One of the earliest and most popular programs sponsored by the NOPBC, this year's workshop topped them all. Presenters at the workshop were: NOPBC parent advocates Lisa Mattioli (Pennsylvania) and Loretta White (Maryland); Doris Willoughby, author of the Handbook for Itinerant and Resource Teachers of the Blind and Visually Impaired; and Ron Gardner, Legal Director with the Disability Law Center in Salt Lake City, Utah (Ron is also blind and hearing-impaired). Topics included: "Overview of the IEP Process," "Office of Civil Rights (OCR) Section 504 Complaints: An Alternative to Due Process Complaints," "Tips for Parent Advocates," and "Implications of the Amended and Re-authorized Individuals with Disabilities Education Act (IDEA)." The parents who come to this workshop year after year testify that it keeps getting better and better, and this year was the best yet.

Thursday afternoon, following another top-notch general session of the NFB Convention, parents had the option of a free afternoon of organized tours or dropping in on the open-ended "Kids and Canes" discussion group conducted by Joe Cutter, Pediatric Orientation and Mobility Specialist from New Jersey. About 35 parents and professionals skipped the tours and came to the workshop to learn more about encouraging independent movement in their children and students.

Although this session was the last official activity sponsored by the NOPBC at the NFB Convention, it was by no means the last opportunity for parents to learn, network, and have fun. For example, one of the items on the agenda for that evening was a showing of the movie, Jurassic Park, by Descriptive Video Services (DVS). Then, later in the evening, parents and older students could have fun helping the National Association of Blind Students raise funds at their annual Monte Carlo Night.

The general session on Friday focused on technology, the blind in other nations, and library for the blind services. Blind professionals also gave a fascinating account of their experiences in such diverse fields as medicine, law, and child care. Friday's events concluded with the annual banquet, often regarded by many as the highlight of NFB Conventions. Fine food, good company, rousing songs, impressive award presentations—including scholarships awarded to 26 outstanding blind college students—and an inspirational address by Dr. Kenneth Jernigan, President Emeritus of the NFB, characterized the 1997 annual banquet of the National Federation of the Blind.

The Convention wrapped up on Saturday at 5:00 p.m. after a whirlwind day of conducting the final business of the organization--debating resolutions, listening to reports, and setting goals for the coming year.

And that's what happened (well, a sampling of what happened) at the 1997 NFB Convention. But a summation of events tells us little of what the event means emotionally to parents and their blind children. Comments overheard at the convention, the results of workshop surveys, the steady rise in the number of families who attend the Convention, and the occassional letter give a glimpse of what parents think and feel about this experience. It only seems appropriate, therefore, to end this report with the words of a parent who attended the convention for the first time this year. Here is what Cathy Helms of Alabama says about what the 1997 NFB Convention meant to her family:

July 14, 1997

Dear Ms. Cheadle,

I was so glad to have the opportunity to meet you in person at this year's National Federation of the Blind Convention in New Orleans. This was our first convention or opportunity to meet with a group of parents and [blind] adults that shared the same interest and attitudes about blindness.

Our oldest son, Jared, who is seven, was born with bilateral retinoblastoma. Through many treatments and doctor's appointments the issue of blindness often got ignored or put off till some other time. I'm glad to be able to share with you that our ability to attend this year's NFB Convention has made a world of difference in our family. Jared gained a great enthusiasm for Braille and cane travel, and he learned a respect for blindness. Not that he hasn't been learning Braille all along, but when you meet people who actually are "in your shoes" and they tell you how much Braille has meant to them—or even more persuasive to Jared, how much they wish they had the opportunity to learn Braille as a child—it becomes real and clear.

My husband and I also enjoyed the opportunity to ask lots of

questions and listen to advice from the many other parents and professionals at the . I have no doubt that attending this year's NFB Convention has had a positive effect on Jared and our family. Next year I hope to attend again and bring the grandparents, too!

Thank you for your help and for your part in a great parent/child convention.

Sincerely, Cathy Helms