Future Reflections Spring/Summer 1993, Vol. 12 No. 2
THE BLIND CHILD: BECOMING AN INDEPENDENT ADULT
By Faye Newberry
[PICTURE] Noel Romey (center) with mother Jacki (left) and sister Kelsea (right) at an NFB National Convention
From the Editor: The goal of the National Federation of the Blind is, quite simply, the complete integration of the blind into society on a basis of equality. In order to achieve this goal we in the National Federation of the Blind have been engaged in a 50-year-plus public education campaign to change society's attitudes about blindness. That is, to rid the public of the notion that blindness necessarily means a life of unrelieved tragedy, dependency, helplessness, and inferiority; and replace it with an understanding that with proper training and opportunity, blind people can live equal, productive, and fulfilling lives right alongside their sighted neighbors and friends.
Although we tend to think of public education campaigns in terms of news stories and catchy television and radio spots “and we have our share of those” the heart of the Federation campaign has been, and still is, carried out quietly in the homes and communities of thousands of Federation members. Striving to live normal lives, even when opportunities have been scarce and expectations low, blind Federationists throughout the decades have been educating those around them about a new way of thinking about blindness. Slowly, we have built a foundation of ordinary sighted members of the public who have, because of their personal contact with the Federation and ordinary blind persons, embraced the notion that blindness can be reduced to a physical nuisance. This, in turn, has led to greater acceptance of the blind on the job and in the community.
Within the past ten years, the circle of Federationists spreading the message of the normality of the blind has been widened to include increasing numbers of families of blind children. The first issue of Future Reflections was published late in 1981, eleven years ago. This means that for over a decade literally thousands of families have been able to raise blind children with the benefit of the Federation philosophy, support, and information. These new Federation families have, in turn, passed their new attitudes on to others in their extended families and communities-families, for example, such as Jacki Romey's family.
About this time last year I received the following article along with a brief note from Jacki Romey. Jacki's son, Noel, is a former winner in our Braille Readers Are Leaders contest. His family have been members of the National Federation of the Blind Parent's Division for many years now. Over these years, the family has attended several national and state National Federation of the Blind Conventions. The Federation and the Federation philosophy about blindness have become a part of their lives. Therefore, when Jacki's niece, college student Faye Newberry, told Jacki that she wanted to write a paper for a class about how blind children become independent adults, it was natural for Jacki to “[send] her a bunch of old Future Reflections and other NFB Literature...” to use in the research. “Faye, 18,” Jacki wrote in her note to me, “is a freshman student at the University of California, Santa Cruz. She has been around Noel all his life and has been part of a family who has had to deal not only with blindness, but other health problems in her cousin, Noel. I think she did a great job on the paper, showing a bit different perspective on the subject than a parent would. She is considering becoming a vision resource or mobility teacher.”
Even if Ms. Newberry does not become a teacher of blind children (and if she has the talent to be a teacher at all, I certainly hope she does; we could use more like her!) she has already exerted a positive influence on the behalf of blind people and will surely do more in the years to come. Perhaps she will someday be in a position to hire a blind person for a job; or she may be a regular classroom teacher who is asked to supervise a blind student teacher; or she may be a scout leader who is willing to recruit a blind mom as her replacement. The point is, the impact we have when we use our Federation literature, philosophy, and personal example to educate those around us about blindness, goes far beyond the immediate benefit we see to our own family or blind child. In turn, the work that others have done, has a lasting and long-reaching impact on our own blind child. This is how the National Federation of the Blind is bringing about change: individual effort channeled and magnified through collective organization and action.
Ms. Newberry's paper is therefore instructive for both its content (which is excellent) and for the manner in which it came to be. It should prompt all of us to ask ourselves if we are doing our part to educate not only ourselves, but our relatives, friends, and neighbors about blindness. Do we share our NFB literature with others? (We have hundreds of pieces of free literature-just call or write our National Office at (410) 659-9314; 1800 Johnson Street, Baltimore, Maryland 21230). Have we attended NFB conventions, and joined our local chapter so we can increase the effectiveness of our educational efforts? Whatever your child's age, it is neither too early nor too late to join the National Federation of the Blind in our efforts to change what it means to be blind.
Here now is Ms. Newberry's article.
You and I live in a world where our sight is our most important-and often over-relied on, sense. 85% of what a sighted child knows, he has learned through seeing. (Taylor) We rely so much on our sight it is almost impossible for any sighted person to imagine how they would function without it. Because of this we often think of the blind as anything from special to helpless. In actuality, a child who is blind can become a completely independent adult. I say can because the knowledge and attitudes of this child's parents are extremely important in his development. Parents who know that their child is just like any other, capable of doing whatever he wants, will pass this knowledge on to their child. While each child who is blind does have special needs, these are only special in that normal needs sometimes must be met in different ways.
To most of you, blindness may seem very distant, something that an unlucky few will have to deal with. To me, blindness is a normal part of life. My cousin, Noel, has been blind for all of his twelve years. While this may seem like a terrible misfortune, no one who knows him thinks so. He is just like any other child-often happy, sometimes sad, playful, and loving. The attitude his parents have always taught him to believe is “So what, you're blind? You can do as much as you want to.” Although Noel's osteopetrosis-a bone disease which causes his bones to become marble-like and break easily- sometimes changes this to “You can do what you want within certain safety bounds,” his blindness is not something which limits him. He goes to a regular school, is a boy scout, loves to read and listen to the radio, enjoys playing games (he is currently teaching me how to play cribbage) and plays outside as much as any other child. Noel can be described as many different things. The fact that he is blind is way down on the list.
What exactly do I mean when I use the word blind? Everyone knows that a person who is blind cannot see. But when I use the word blind, I am also including people who are visually impaired. These are people who can see, but not very much-sometimes seeing only a small percentage of the entire visual field or being able to read extremely enlarged print with the aid of glasses. While the degree of a child's blindness will dictate the amount of different approaches needed to solve his needs, it is important that the word blind conveys a varying level of blindness or sight.
ACCEPTANCE AND ATTITUDES
Whether the child is blind or visually impaired, his parents play an important role in his development. Parents' attitudes about their child's abilities often determine what he will accomplish. For this reason, it is important for parents, from the beginning, to accept the fact that he is blind. Parents who have not accepted their child's blindness will become uninformed- even feeling so helpless that they decide an institution will provide better care for their child. Other parents in denial rush around looking for a miracle cure, disrupting finances and family life while giving the child false expectations. The blind child must know that blindness is not a barrier, but is an inconvenience which can be overcome.
This philosophy is one that Noel has lived with all of his life. When asked how he feels about being blind, his immediate reply was that it doesn't limit him. Parents who accept that their child is blind and believe in his abilities- as Noel's parents, Jacki and Larry, have always done-will show the child that he can succeed.
The way parents accept their child is the way he will be accepted by those around him. Having a positive attitude will teach others to act this way as well. Rather than stressing limitations or things he cannot do, parents need to talk about the things he can and will be able to do. A parent's acceptance and positive attitude show the child and the world around him that he can accomplish anything he wants. A child will only try to succeed if he thinks that success is possible.
Parents are not perfect, and it may sometimes be hard for them to take on that positive attitude which is so important. Parents may blame themselves for the fact that their child cannot see. They will be anxious and worried about their child's future. Often, they are afraid that their child will never become independent or self-supporting. But it is normal to feel this way. At this point, skilled guidance is important. Parents need to resolve these feelings, know what to do, and how to do it. There are many groups for parents of blind children, for example, the National Federation of the Blind Parents of Blind Children Division. Groups like this one provide information, understanding, and support to parents who so often start out feeling lost. With the influence of acceptance and a positive attitude, the blind child is on his way to accomplishment.
The blind child is more like the sighted child than he is different. He eats, sleeps, plays, and loves just like all children. A difference occurs only if the child is not given good opportunities for development. Blind children who are given the opportunity to develop good motor ability, orientation, and independence will become adults who can get about independently and adapt and orient themselves in new situations.
Parents worry that their child will not develop normally. If they raise him in a normal way, a child who is blind will develop just as other children do. Normal doesn't mean pretending his blindness doesn't exist; it does mean giving him opportunities for exploration and problem solving. This means letting the child be independent, not doing things for him that he can do for himself. It also means not overprotecting him; such as being afraid of his bumping into things and thereby causing the child himself to become afraid of moving about and exploring. Noel used to have this freedom until he broke both of his legs. Now, even though his legs are healed, Jacki and Larry have to limit Noel more as to what physical things are safe for him to do. Instead of letting this become a problem, they have found new things that he can do, things like summer recreation programs, horseback riding, and golfing. While this physical limitation is due to Noel's bone disease rather that his blindness, the point is that even under conditions like these, parents can still find ways to let their child experience things and be independent.
Blind children, just like all children, want and need to explore their world. For a child who cannot see, touch becomes very important. Freedom to touch and handle things is integral to his development. No matter how inconvenient or time-consuming it is for parents, their child must be allowed to be curious in his own way. While this is certainly a test of patience, parents need to help their child explore the world. This also includes answering all of his questions. If he asks what something is, parents need to tell him, and then show him all of it. Over and above answering his questions, parents should show him things, things like the difference between a circle and a square. Parents should keep their child aware by doing things like telling him the color of the clothes he wears each day. Things which sighted children comprehend at a glance must often be explained to a blind child. Patience is extremely important.
It is important for blind children to have many opportunities for hearing, touching, seeing, smelling, tasting, and feeling. Often, a child must be purposefully helped to experience things sighted children easily attain. Skills such as crawling, standing, walking, and so on, must be physically shown to a child who cannot observe others doing these things. Parents need to show their children the world beyond arm's reach, and encourage them to explore it. Children need to be given the opportunity to see parents working and doing things around the house. In learning new tasks, it is helpful to watch and hear how to do something new, then try to do it themselves. Just like other children, blind children like positive reinforcement when they have done something well or tried something new, such as a pat, a touch or verbal congratulation.
Jacki and Larry began gathering information on blindness as soon as they found out that Noel was blind when he was four and one-half months old. Because of this, they knew how important it was for Noel to discover and experience things. He started early intervention programs at six months of age. Early intervention, or infant stimulation, is a program where a teacher works with the child, playing developmental games and showing him how to do things. While Jacki says that enrollment in a program is not necessary as long as the parents know what to do, she does say that the earlier the intervention, the better the child's development and IQ will be.
Social experiences are also very important in a child's development. A blind child needs friends, both blind and sighted, to play with. Association with sighted people is important throughout life and association with other blind people is especially important when the child is older. When Noel was a baby, he and his mother went to Baby Day each week at the Foundation for Blind Children. This was great for Noel's social development-he played with other blind children-and good for Jacki because the parents heard a person speak on blindness each week. However, parents must be careful with exposure to others because different people may treat the child in different ways. Expecting him to be independent at one time and overprotecting him at another will only result in a frustrated youngster. It is important for parents to keep communications clear and open so that people will handle the child consistently. Other people need to know what parents expect of a child who is blind so that confusion does not arise.
Parents who are uneducated in the area of their child's development may worry that he will not develop in the same way. This is because a baby who cannot see will not automatically scoot to grab the toy just beyond arm's reach or contentedly watch a parent working in the kitchen. Blind babies and children who are not encouraged and helped to explore may develop blindisms, mannerisms such as not keeping their head straight or rubbing their eyes, because they are bored and understimulated. But parents who are educated by parent groups, talking to blind people, and so on, will know that their blind child is just as curious and only needs to be shown the world around him. Parents play an important role in the physical development as well as mental development of their child.
A PART OF THE FAMILY
Parents play such a big role in the development of their blind child that it can be easy to forget about his sighted brothers and sisters. The family should not revolve around the blind child's needs; he is a part of the family and should be treated so. All siblings in the family need to be treated fairly. If a blind child's needs are always taken care of first, he will learn that this will always be so throughout his life. Noel's younger sister, Kelsea, likes having a brother who is blind because she gets to do “lots of neat things” that other kids don't get to do. But there are times when she feels left out or ignored. Sometimes, she feels ignored by her parents, like when Noel was in the hospital with his broken legs. More often, however, if she feels ignored it is because someone else, besides her parents, is only paying attention to Noel. When this happens, Jacki pays attention to Kelsea and asks the others to notice her, too. This way, everyone is included and feels like a part of the family.
Another important part of family life is responsibilities. Because the child takes an active part in the family, he not only shares in the pleasures, but also the responsibilities. Parents should give him chores and expect them to be done as with all children. It is important to judge and treat the blind child fairly; not indulging him, yet not setting goals and expectations so high that he is discouraged.
So far, I have been mainly talking about a child's life at home. But all children eventually become old enough to be enrolled in school. Parents of a blind child have the choice of sending their child to a special school for kids who are blind or enrolling him in a regular public school. While in the past, specialized schools and institutions were the norm, today most blind children are going to public schools. While specialized schools are still good for some, it is often not what a child who is blind needs. A school for the blind may be far from home, which would leave him with less of the parental influence and support he needs, as in Noel's case. These schools may also set a precedent for a need of sheltering, or provide unwanted exposure to children who are very dependent. Although this is not the case for all schools for the blind, it is important to check out the school carefully before enrollment. One bonus of a specialized school is socializing with other children who are blind. However, this should not be the only reason for going to one of these schools; this can be done elsewhere.
Often, parents will choose to send their child to a public school with an itinerant teacher to provide special skill training such as Braille and cane mobility, as Noel and his parents have done. Jacki and Larry knew that everything Noel would need he could learn at a public school, so they shopped around for a good district and moved into it. Like Noel, when a blind child goes to a regular school and spends most of his day in the classroom, he will see himself as just another kid, not a special kid with limited abilities and special needs. This is exactly why Noel likes going to a regular school. Being a part of the class is a good social experience and will start a child out early learning the behavioral expectations of the sighted world. Kids who are blind usually spend a part of their day with a specialist who will teach them things such as Braille, computers, typing, orientation, and mobility skills. These are skills that sighted children either never learn or will not learn until a much later date. There are also classes which kids can take outside of school, such as classes that teach living skills like cooking for people that are blind.
Parents may have problems getting a school to accept someone who is blind. Regardless of the presence of Public Law 94-142 -The Individuals with Disabilities Education Act, or IDEA-parents and their child may have to look around or push a school to accept him as a regular student. It is often even harder for parents to convince the school that he needs no special care or limitations. Teachers and officials may think that a blind child needs someone to watch him on the playground and take him to and from class, or they may unnecessarily restrict him from P.E. But with persistence, parents can usually lift these limitations by showing and insisting on their child's independence. While Jacki and Larry had no trouble enrolling Noel in the school he is in now and originally had no problems with restriction, recently the school has been placing restrictions on him because of paranoia about his bone disease. Now, Noel is required to walk around school with an aide. None of his friends or even his sister can walk with him. This makes Noel and all of his family angry. Noel is beginning to feel like an outsider. Kelsea is mad that she can't walk with her own brother, and Jacki and Larry don't like either of their children feeling this way. They are all hoping that next year, when Noel begins junior high, he won't have these problems.
THE PUBLIC'S VIEW OF BLINDNESS
With the problems Noel is having at school, you have begun to see that the real problem of blindness is not the blindness itself; it is the public's misconceptions, lack of understanding, and attitudes about being blind. The blind are thought to live in a world of darkness, and darkness is equated with evil and inferiority. Although this may seem a bit extreme, let's look at an excerpt from a book on government and citizenship which is currently used in many public high schools. From Building Citizenship, by James McCrocklin:
“Caring for the Handicapped: The blind, the deaf, the dumb, the crippled, and the insane and the feeble-minded are sometimes known collectively as the defective - people who are lacking some normal faculty or power. Such people often need to be placed in some special institution in order to receive proper attention.
Many blind, deaf, and crippled people can do a considerable amount of work. The blind have remarkable talent in piano tuning, weaving, wickerwork, and the like. The deaf and dumb are still less handicapped because they can engage in anything that does not require taking or giving orders by voice."
The prevailing belief that the blind are inferior, helpless, dependent on others, not able to function in a fast-paced company or do physical labor, and are especially suited to special kinds of skills such as musical skills, weaving, or mending furniture are not only wrong but are very damaging to the independence of the blind. This is especially true when a person who is blind looks for a job. Although most employers are sympathetic to a blind person's situation, they don't believe that their work place is a suitable environment for the blind. As one manager put it, “Our work is very demanding. Carbons must be filled out. Speed is at a premium, and a great deal of work must be done each day. Then, there is the fact that our typewriters are quite a ways from the bathroom, and we cannot afford to use the time of another girl to take the blind person to the toilet.” While Noel's parents do worry about their son's getting into the work force, Noel has the IQ to excel. The people that Jacki feels will have trouble making it are those who don't have parental support throughout childhood.
There are organizations that are expanding the job opportunities for blind people. One such organization is Job Opportunities for the Blind, or JOB. This organization helps to place blind people in the work place. While it may take a lot of convincing to hire a blind person, once a company does, the climate usually becomes hospitable for the new employee. Not only does the person being hired profit, others working with him also gain a new knowledge of the equal capabilities of the blind.
The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding the general public has about blind people's abilities. We often assume that people who are blind cannot get along without their sight merely because we, with our sight, cannot imagine ourselves doing so. Blind children who are taught positive attitudes and given good opportunities for development by parents, family, and teachers, have the ability not just to get by, but to excel at whatever they choose to do. Blind children who are given all of these opportunities find that their blindness is only a physical nuisance.