Future Reflections Winter 1992, Vol. 11 No. 1

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CHANGE THROUGH ROLE MODELING AND NETWORKING

From the Editor: The final presentation of the morning session at the 1991 seminar for parents and educators of blind children was a panel of parents, moderated by Carol Castellano, second vice president of the NFB's Parents of Blind Children Division (POBC). They discussed what the Federation had taught them and offered some excellent advice to parents based on their own experience. The other members of the panel were Debby Day of Bellingham, Washington, who chairs the POBC Network on Blindness and Adoption; Marty Greiser of Dillon, Montana, a member of the POBC Board of Directors; and Linda Balek of Berryton, Kansas, who is a parent leader in Kansas, and whose husband Tom is Secretary of the POBC. Here is what they had to say:

Carol Castellano: This morning we will be talking about how we are changing what it means to be blind through role modeling and networking. I'd like to share some experiences that my family has had. We are from New Jersey. I have two children, Serena, who is seven and is blind, and John, who is four. We had early exposure to the Federation, which I think was very lucky, especially after hearing the scholarship winners discuss the disadvantages they faced while growing up. When my daughter was nine months old and in the hospital for eye surgery at Duke University, the social worker gave me a lot of pamphlets of information about groups and resources. He handed me Doris Willoughby's book, A Resource Guide for Parents and Educators of Blind Children, and he told me that I really needed to know about this organization--not to get too close--"they are really outrageous, militant, and uncooperative, but they have some pretty good literature." So I read the book while my daughter was undergoing surgery, and it put us on the road to success. I feel that the Federation hasn't let us down yet and that we are really on that road.

Here I have seen blind people--totally blind, partially blind, whatever--in control, articulate, running things. They are very good role models for me. No one can tell me that my daughter, who happens to be totally blind, can't do that too someday, if she has the other attributes that support that kind of leadership. This came home to me very strongly recently in a parents support group that I attended, run by our state agency for the blind, which provides our services: teaching Braille, cane travel, etc. At this support group about thirty parents were in the room, mostly parents of young children--babies to maybe three or four years old. Some spoke up, saying that their children were in regular nursery schools as opposed to a pre-school handicapped setting. The counselor from the Commission, our state agency, pointed out that the children that were in regular schools had plenty of vision. It seemed to me that our agency believes that the most important attribute a blind child can have for success is vision. I raised my hand, before I could stop myself, and said, "Gee, I'm really glad nobody told me that when my child was young, because she is totally blind and in kindergarten now and is doing fine. I am glad that I didn't hear that she needed vision to succeed."  So I do have a strong role model here, and with the people we heard speak this morning, you can't get much better than that. I wish I could speak that well. Another time that it came home to us was when we were applying for admission to a private school. We were talking to the admissions director, and she told me that they had had a blind student once at that school. I know that can be good or bad. She said that she therefore knew what it would mean to have a blind child in her school. When this seventh grader enrolled, she did not know how to tell time. She had no table manners (this was a sort of fancy private school that was concerned about manners), and of course she couldn't find her way around the building, and anyway she was late for all her classes because she had to lug that big Braille writer around. I was glad that many times I had seen people in this organization taking notes with a slate and stylus. It really brought it home; you need to know how to write using a slate. I don't want my child to have to lug a cart or have a sighted person assisting her, getting her from class to class. I know that it doesn't have to be so, and I was able to educate that admissions director gently on the subject.

Another thing that I have learned here is that sometimes what's necessary is a polite but firm "no thank you" to unneeded help. Everybody wants to help my daughter. That's the first thing that jumps into anybody's mind when they see her. She's a cute little thing, walking around with her little cane, and everybody thinks, "how can I help you?"  Serena couldn't talk for a long time; now she sure can. We were concerned for a while about how we would get her to take the responsibility of saying a polite but firm "no thank you."  Now she says things like "Why are you taking my hand? I can do it myself. I don't need your help." Maybe we went a little overboard in that lesson.

The last thing I want to mention is that I learned that blindness in and of itself need never stop my daughter from doing an activity or accomplishing a task. She may not be able to do it for other reasons, but not because of blindness. I learned that by finding out--again in this organization with so many blind adults around--that if even one person has done a task, blindness doesn't have to stop you. And if you have the necessary attributes, you can go ahead.  

I would like to illustrate this by telling you about a family vacation we took. We went to northern California, about four hours north of San Francisco, and we went on a hike through a forest to a waterfall. We are from New Jersey and not the biggest hikers in the world. I was on this hike with my mom, who was about seventy at the time; my sister-in-law, who is a California native and really knows what she is doing in the woods; my son, who was two-and-a-half; and my daughter, who was five-and-a-half. There were some times when the trail narrowed to about two feet. There was a mountain face on the one side and a drop-off on the other side, and way down below was a river that you could hear but hardly see. There we all were, walking through. It was a wonderful experience, and we had such a wonderful time being close to nature and accomplishing this kind of hike.

We made it to the falls, and we came down again and thought it was terrific. It never occurred to me even once to leave my daughter out of that trip because she was blind--never. There were times that I held hands with somebody because I was scared, and we held hands with the children and my mom, but we all did it on an equal footing. That's what I would like to say about our family's experiences and the change in my heart and mind; I know that all things are possible.

Our next panelist is Debbie Day.

Debbie Day: Good morning. I'm the parent of six children. Two of my sons, Tim and Tom, are both blind and joined our family by way of adoption. Tim came first. He arrived in 1986 at the age of three-and-a-half. But even before he arrived, we began searching for any and all possible resources to help us to raise a blind child. I am a pretty determined person, and I made contact with every agency, organization, person, place, or thing that had anything to do with the blind. When we delved into all of the literature and spoke with numerous agencies and organizations for the blind, there was one that stood out. That was the National Federation of the Blind because it was the NFB that shared our natural instinct to see blindness not as a debilitating handicap but merely an inconvenience that makes it necessary to learn other ways of doing things that we would typically do by sight. It was the NFB that shared our belief in this child's abilities and potential and encouraged us to have strong expectations despite some professionals who had feelings and comments to the contrary. And it was NFB who challenged and still challenges our attitudes toward blindness and, by doing so, helps create in us a stronger and healthier climate in which our child can grow.

My son Tim is now labeled the miracle child by our state's family consultant for the blind. I will begin by telling you a little about Tim. The first three-and-a-half years of his life were ones of much love but extreme deprivation. There were virtually no expectations of him, and because he was either held or kept in a crib at all times, he had little opportunity for even any accidental learning. Tim arrived at age three-and-a-half seriously developmentally delayed, non-verbal, non-mobile, and functioning on a six- to twelve-month level in all areas. But under the circumstances it wasn't at all surprising.  

What did surprise and confuse me were my encounters with certain professionals working to help the blind. Not only were their remarks concerning Tim's potential discouraging, but so were their expectations of the blind population in general. If I had held their low expectations, Tim would not be where he is today. Now, four years later at age seven, he is a bright and outgoing boy who just finished his kindergarten year in a typical class in his neighborhood school. He reads and writes Braille on a second-grade level, and he is a cane traveler.

Yes, Tim has made great gains, but no, he is not a miracle child. He is a good example of the damage that can be inflicted on a blind child by not embracing a healthy attitude about blindness and by allowing so-called professionals to map out your child's potential in life by their substandard expectations of the blind. If in fact any miracle did occur, the NFB was responsible because it was the support, words of encouragement, and experience we received from NFB members that made the difference.

Our older son Tom, after spending nine years in many orphanages overseas and three years in-state, moving from home to home, joined our family in November of last year. At that time he was a residential student at the Washington State School for the Blind and continued there until mid-January, at which time he transferred to our local school district. Whereas I realize that some blind individuals have had successful experiences at residential schools, it was not so in Tom's case. A big area of contention for us was cane travel. Early on we learned that Tom was not using a cane on campus, nor was he receiving orientation and mobility training. Tom was twelve-and-a-half years old. He had very limited vision. He could not independently cross an intersection or travel the shortest distance in unfamiliar territory. He could and did memorize frequently traveled routes such as the school campus, but he couldn't successfully or confidently deal with any changes that might occur on those routes. Knowing that, was it too much to assume that cane travel and orientation and mobility training would be an important part of this child's education at a school for the blind? Well, that was my assumption, but it was not correct. And even more upsetting to me than the actual loss of independence that this was inflicting on Tom were the unspoken messages that he was receiving about his blindness due to their poor attitudes.

No matter whether your child is attending your neighborhood school or a residential school for the blind, if the program is inadequate, I am here to tell you you can change it. You are and must be your child's best advocate. NFB's support, encouragement, and information are invaluable, but you must be willing to take up the fight for your child when it is necessary. Go to the Individual Education Plan workshop later this week. Know what the laws are. Determine what your child's educational needs are. Decide what you are willing to compromise on and what you will stand firm on. Our district now has a very strong program for the visually impaired, but it wasn't always that way. We started out with virtually nothing. After two years of constantly assertive and perhaps sometimes aggressive behavior on my part, (if only to get me off his back) our Special Education Director hired a specialist for the visually impaired (our very own Federationist Ruby Ryles); and orientation and mobility instructor; a Braillist; and two Braille teachers. It can be done.

I might note that, in the five short months that he has been in our local district after transferring from the School for the Blind, Tom made great strides in mobility. He receives three hours of orientation and mobility training per week, and he has progressed academically two grade levels in nearly all subjects. Because of the Federation my boys are growing up with strong and healthy attitudes about their blindness, and they have excellent role models.

But being involved in adoption issues as well, I am concerned for those blind children waiting for adoption in the foster care system here and in orphanages overseas. I'm concerned about blind adults who face discrimination in the adoption process, and I am concerned about case workers and adoption agencies, their misconceptions and their poor attitudes about blindness. Several months ago Barbara Cheadle asked me to chair the POBC Network on Blindness and Adoption, and these are the issues that we deal with. With networks like these, we can change and are changing what it means to be blind, and I am very happy to be a part of the National Federation of the Blind. Thank you.

Carol Castellano: Thank you, Debbie. Our next speaker is Marty Greiser.

Marty Greiser: I am from Montana and the father of twin four-year-olds, a boy and a girl. My son Cody is blind, and today I want to talk a little about our efforts to create an educational program in a rural school, where no such program has ever existed.

The old saying about the blind leading the blind has been around quite a lot longer than most of us. It is certainly nothing new to the Federation, but in our community and our school, this phrase just doesn't have a positive meaning. Our son will be the first blind child ever to go through our school district, so they really don't know what to do. Our resource consultant from the state school is ineffective at best; he's hardly ever there.

Our big problem was finding a teacher. Eventually the school did come around to the understanding that my son had to learn Braille and cane travel. They didn't know how they were going to provide this because there wasn't anyone within one hundred and fifty miles who could teach Braille, let alone cane travel or Nemeth Code or slate and stylus or positive attitudes toward blindness. We didn't know what to do. We were at an impasse. Our IEP called for Braille instruction. So we called the Federation, and I talked to Mrs. Cheadle. She said she would see what she could do.

A few days after that we received a phone call from a woman in South Dakota who had just graduated with a degree in elementary education, and she was blind herself. She was looking for a job, and I thought what a good deal. She had all the skills we were looking for and some others besides all rolled into one person. She is a former scholarship winner, by the way, whose name is Kim Hoffman; and she will be Cody's aide next year in kindergarten. He will be receiving his Braille instruction, slate and stylus, and cane travel; and we are anticipating a very successful elementary program. It looks like we are off to a good start. She will be at our school next fall, and everything just seems to be falling into place.

The school was a little reluctant to hire her. There are no blind people in our community, and they didn't know what to expect. They asked us questions about how she would do this or that. I really couldn't answer because I am not an expert on blindness. Once they interviewed her, they were much relieved because she could actually talk and seemed very competent. [Laughter] We are very optimistic, and now the school is too. We hope that she can stay for a long time, until our son learns how to read, knowing she will become less and less involved with his education as he becomes more independent. This provides an opportunity for her to get her foot in the door as a public educator. So if anyone is in a similar circumstance, I would encourage you to contact the NFB or the Job Opportunities for the Blind program. Anyone in the Parents Division can help.

These scholarship winners are also a real resource, just wonderful people. Kim is an excellent role model for our son since, as I said, there are no other blind people in the community, and he is very much alone. We think that everything Kim has to offer, besides her academic skills, is absolutely essential. I will be sure to let the Parents Division know how this experiment turns out. I can't help but think it will be successful.

Carol Castellano: Thanks, Marty. We will be looking forward to hearing the next chapter. Our final panelist is Linda Balek.

Linda Balek: I have an eleven-year-old son; he is the red-headed one. You'll see him; he'll just come right at you.

The first thing I want you to do as parents when you come to the NFB convention--some of you are here for the first time--is to take notes on speakers. Jot down my name; jot down anybody's name; circle it. Then six months from now, a year, two years, three years from now, when you're having a problem, it will come back to your mind that you heard a person talking about something like it. Call Barbara Cheadle and say, "I need to talk to this or that person!" That's what I have done. We are talking about networking. Barbara knows that I have been on the phone; I walk up to people at these conventions and I say, "What is your phone number? Someday I think I am going to have to talk to you."  I have talked to them two or three years later, and they don't know who the hell I am, [Laughter] but they answer my question. Sometimes we need somebody to say, "Yeah, you're right."  We get a lot of people we talk to on a daily basis in our school system who say we're wrong, and we need somebody who knows what needs to be done in the education field, not a professional who went to school but has no kids. No offense to anybody that's a teacher, but the majority of my son's teachers have been single women, and they don't even know how to deal on a personal level with a child, let alone on our level. So that's why networking is so important. Belong to your local NFB chapter; that's another important resource. We call ours a family; we party together; we fight together; we do everything together like one big family. It's great to get on the phone with them and say, "I know that this sounds stupid, but how do you put your shorts on?" That may be a little elementary--that may not be exactly what I ask—but ask anything. Get on a family level, so you can talk to blind people and say what is important. Should your child learn how to print if he is totally blind? Should he do this or should he do that? Is this appropriate? Be with the people who can tell you a lot, and you will learn from them.

Jeff is eleven years old. Last year he spoke to the House and the Senate in Kansas. We got a Braille bill passed, and now every child in Kansas has the right to learn Braille. [Applause] That is something not every state has, and that is something that is very important to work for.

I want to tell you just one quick little story because we are running out of time. I talked to a little girl today. I think she is ten or eleven years old. She asked me, "What kind of cane does Jeff have?"

"Well, he has an NFB cane."  She wanted to know all about his cane, and I said to her, "Well, your cane is a little short."

She said, "The school says that I have to use it."

"Do any of those people who are telling you to use this cane use one themselves?" I asked.

Her answer was no. The point is, nobody can tell you how long your cane should be except a blind person. Nobody can tell you when you need to learn how to use a slate and stylus except a blind person. You can get all of these professionals that say you don't need to learn Braille, but how are you going to read? You need to talk to blind people to get this information, and the NFB can help you. Any time you need to talk to somebody, just call Barbara. You may have questions like "My son wants to learn to play drums, or my son wants to learn this," and she'll point you to someone who can help. The NFB isn't here to spoon-feed you. We are not here to say, "Well, now I'm going to take you over to this spot, and this will all work out, and this person will do your job for you." That is not what we are here for. But we are here to network, and that's what we do. Jeff takes Karate, Jeff is a drummer, and I mean he plays a whole set of drums, and they are loud. (We didn't bring them and you are lucky.) But networking is really what the NFB is about. We as parents needed that more than anything. To think that you are the only parent in the world--I think every parent has felt that way.... All of us have even overlooked our kids' being blind. I felt like I was the only parent of a blind child in the world. I knew other blind people, but I never knew other parents of a blind child. I think that was harder, and that is where the NFB can help. We are going to have some meetings this evening; they are in your agenda. You can bring your kids. Come up and sit around and talk and get some information that way. There will be seminars this afternoon that can help you. Tom, my husband, is chairman of the POBC Technology Committee; we get phone calls from a lot of other people too. It is a great way to learn and to have another resource besides the professionals; we all need that. Thank you.

Carol Castellano: Thanks, Linda. I'd like to conclude this segment by saying that we will create the future. And if we get out from under the negative assumptions and the low expectations and if we bring up our kids to be normal, productive citizens, then instead of wearing our children's disabilities like credentials, we can make changes from a position of strength. Thank you.

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