Future Reflections         Summer 2010

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SIGHT UNSEEN

by Mashawna Thompson

Reprinted with permission from Beyond Blonde, Issue 3, 2009-2010 and from TX SenseAbilities, Winter 2010 

Lyra sits at a table, reading from a Braille bookFrom the Editor: Mashawna Thompson serves on the board of NOAH, the National Organization for Albinism and Hypopigmentation. She is certified as an education advocate for the Kansas State Department of Education and works part-time as a voice instructor.  She joined the NOPBC after she read a Future Reflections article on dual media by Marla Palmer.

Beginning this year, her first year of preschool, my daughter Lyra has been learning both print and Braille. This concept is known as "dual media." I must admit that when Lyra was a baby and we were still coming to terms with her albinism, the last thing I wanted to hear was that she might need Braille some day. Braille was for blind people, and my baby was not going to be blind! Nearly everything I heard assured me that Lyra's vision would be good enough for her to be a print reader; Braille would not be necessary. So how did I become such a strong supporter of the dual-media approach?

The concept of dual media was introduced to me by one of Lyra's teachers of the visually impaired (TVIs) when Lyra was receiving early intervention services. At this point I began to do my own research. I read dozens of articles and papers. I also talked to other parents of children with albinism and to adults living with the condition. I realized that there was not enough evidence to prove that Lyra would never need Braille. I became convinced that for some situations, at various times in the future, Braille might be her best option.

I learned that the use of Braille may prevent or reduce eyestrain, headaches, and neck and back problems caused by poor posture. With Braille, Lyra would not be dependent on certain lighting conditions, print size, or the availability of magnification devices. If she turned out to have trouble reading her own handwriting, she could use Braille for taking notes.

"I dream of being able to read a book myself, not as an audio book, and be able to read and read until I feel like stopping--not because I'm getting a headache or am tired of holding a magnifier or sitting in some strange position--but because I just want to stop," says Heather Kirkwood, an adult with albinism. The majority of people with albinism do not read Braille. Why is that? It may be that they truly don't need it. It could also be that they were never given the opportunity to learn Braille. "I would have benefited greatly from learning Braille as a young kid, but indeed wasn't even offered the opportunity until adulthood," Heather Kirkwood says. "[This is] an area where I feel the system let me down."

Teacher shows Lyra how to position her hands for Braille readingTraditionally, most children with albinism have been taught print exclusively. However, the fact that it's always been done this way doesn't mean that print-only is always the right decision. "In the past, teachers struggled over the decision to teach Braille to students who had the capacity to use print," report educators Koenig and Holbrook. "However, students who were inefficient in print reading and writing had no alternative other than to struggle with that inefficiency." (Koenig and Holbrook, 2000, p. 296)

Some adults with albinism say that they learned Braille but don't use it. When I hear this, I immediately want to dig deeper. I find it helpful to ask them a few more questions. At what age did they begin to learn Braille? How long did they receive Braille instruction? Did they learn contracted and/or uncontracted Braille? Did they learn to read Braille tactually? The answers to these questions make a big difference in whether a person who learned Braille will actually be able to use it effectively.

I know that there are many examples of people with albinism who excelled through school and went on to become very successful adults in a variety of career areas, but at what cost? Marleena Coulston, an adult with albinism, was introduced to Braille in seventh grade after her reading speed had begun to decline. At that point, she says, she was very resistant to Braille. "I most definitely have had to work harder than my peers, due to my eyes tiring from the heavy amounts of reading," she says. "Everything took twice as long for me to complete and do. Tests always took longer, my homework always took longer. ... I think that Braille would have made a difference. I think it's a good thing. I probably would have adjusted better if they had introduced Braille to me at an earlier age."

Past examples and trends do not prove that my child won't need Braille. Visual acuity in people with albinism varies widely. No one can predict with certainty whether or not Braille will be useful to Lyra in the future.

The purpose of having Lyra learn Braille isn't so she can get away with doing less work. I want her to do more than just get by. I want her to have the confidence and ability to reach her highest potential. Her ability to succeed should not be limited by her visual impairment. I want her to learn the value of hard work and at times even of struggle, not because of her vision, but because she is continually provided with a challenging curriculum. She needs to acquire the skills necessary to survive in the real world. She needs to know that she can't truly become successful by using her visual impairment as a crutch. I've stopped lowering my expectations and no longer focus on her limitations. I don't make excuses for her; I let her try something again and again. As John Stuart Mill once wrote, "The pupil who is never required to do what he cannot do, never does what he can do."

The decision we've made for Lyra has not come without criticism. Here are some of the arguments against Braille that we've heard.

You're trying to make her blind. Lyra is not totally blind, and I don't expect her to learn and rely on Braille alone. However, she is not totally sighted either. Why should she be expected to learn and rely on print only?

Lyra is a visual learner. This doesn't mean that her vision will always be the most efficient way for her to access information. If relying only on her vision for reading causes her to fall behind her peers and results in physical pain, why will she want to read at all? "The only books I have read for pleasure are books that I am extremely interested in reading," says Margaret Mary Campbell, an adult with albinism. "Had I learned Braille, I might have had more of a love for reading. I just looked at reading as a big chore."

Using Braille will make Lyra look blinder. In my opinion, holding a book or paper an inch away from her face would be much more noticeable and likely to make her appear blind. Using Braille will not make her look any more different than wearing headphones for audio materials, using a CCTV, or using a handheld magnification device. Children will always notice differences; it doesn't matter what the specific difference is. Basically, our approach is to be aware and look out for any social or emotional issues that might appear.

She will just read the dots visually. She will be resistant to learning Braille by touch. Children will often look for the easy way out; that doesn't mean we make learning something optional. If Lyra tries to read the dots visually, there are ways to help her break the habit. The teacher can put a piece of paper over her hand or place a partition of some sort between her eyes and her hands. An easier and even more effective solution could be for the teacher to require her to maintain correct posture when reading Braille. If a child is sitting up straight, not hunching over or bringing the paper up close, it is unlikely that he/she will be able to read the Braille dots visually. Learning Braille is only as hard as the teacher makes it. If the teacher believes that kids with low vision can't learn Braille, that attitude will affect the student's confidence and ultimately his/her success in learning.

It's unnecessary to learn Braille, with today's technology. Why bother when there are so many other options? Many alternatives to Braille are available today. These include low-tech and high-tech magnification devices, audio books, large print, and more. However, all of these options have limitations. Other than audio format, they all require vision. The issues of eyestrain and fatigue remain. None of the available options is as versatile as Braille. You can read Braille in bright light, low light, or even no light. Braille doesn't require a computer, an audio player, or even electricity. You can't assume that what works for one person will work for everyone. "I had a tough time adjusting to books on tape because my mind wandered," says Marleena Coulton. "I'm actually, ironically, a 'visual learner.'"

Chantel Alberhasky, the parent of a child with albinism, says, "It was once believed that technology would replace Braille for people with low vision, but just as technology cannot replace print, it cannot replace Braille." Technology has had a huge impact on the use of Braille, not by replacing it, but by making it more available. Through the power of technology and programs such as Bookshare and WebBraille, books in digital format can be downloaded from the Internet and embossed with a Braille printer for immediate access.

Whether or not to learn Braille should be Lyra's choice. Yes and no. Lyra is not yet old enough to understand the importance of becoming a good reader. Even if she becomes resistant to learning Braille when she is a little older, I will still require her to continue Braille instruction. I'm sure many students complain about learning to read print, but we never let them opt out of print reading simply because they don't like it. When Lyra is an adult I want her to be able to choose if, when, and where she wants to use Braille. In order for her truly to have that choice, her Braille reading must be proficient and fluent. She won't think Braille is useful or recognize its possibilities if all she ever learns is the Braille alphabet!

"My son is only finishing kindergarten, but he is learning Braille along with print," says Chris Kramer, the parent of a child with albinism. "I am giving him the tools to help him be as successful as he can be." Braille is a tool, just as a closed-circuit television (CCTV) is a tool. Neither can be used effectively without proper training. Instruction must begin very early, even before it's needed. When the child is older, he/she may or may not choose to use a CCTV or Braille, but at least he/she has the knowledge and skills to make a sound decision.

You're causing Lyra to be less independent. You're making her more disabled. According to Merriam-Webster, the definition of disable is "to make incapable or ineffective; especially: to deprive of physical, moral, or intellectual strength." In no way am I trying to make Lyra less capable or to weaken her ability to succeed. I'm doing the exact opposite. I don't want to limit her, I want to empower her.

"Don't lower your expectations to meet your performance," says athlete Ralph Marston. "Raise your level of performance to meet your expectations. Expect the best of yourself, and then do what is necessary to make it a reality." I've heard too many examples of adults with albinism who can't read for long periods of time, who read slowly, and who suffer from intense eyestrain and headaches. I don't know for sure that Lyra will experience eyestrain and headaches when she is older, but I can't say for sure that she won't. "As a thirty-five-year-old I personally wish I had learned Braille, especially with some of the things I've done in the workplace," says Julie Stevenson, an adult with albinism. "I've had to give several lengthy presentations, too long not to have notes for ... and it is not good PR to be constantly peering at a paper less than an inch from your face rather than looking at your audience."

The decision of whether or not a child should learn Braille should be based on input from his/her IEP team. It is not a decision that should be made based on the opinion or recommendation of any one person, including a doctor. Information from medical professionals is very important and very useful, and absolutely must be considered in the development of the child's IEP. However, the decision to provide Braille instruction is an educational decision, not a medical one. Would an education professional be qualified to make a medical decision? No. So why would a medical professional be qualified to make an educational decision? When making that decision, the team must consider the child's current and future needs. The reading requirements of a first grader are very different from those of a high schooler. As the print size gets smaller and the amount and complexity of reading increase, will the student still be able to keep up?

Parents considering Braille should request that their child receive a quality learning media assessment. The assessment should evaluate the child's abilities, not just in a controlled environment, but in a variety of settings. However, the assessment cannot be the only determining factor. One of the provisions of the Individuals with Disabilities Education Act (IDEA) is that a school may not use any single measure or assessment as the sole criterion for determining an appropriate educational program for the child. More information about the IDEA provisions regarding Braille instruction can be found at the following Website: <http://idea.edu.gov/>.

In terms of her cognitive abilities, Lyra is doing extremely well. She is imaginative and highly curious. I expect her to excel in school. Why shouldn't I? In our family we expect more than just average academic performance. What good does it do a child to base goals on ideas such as "at grade level" and "proficiency" if he/she is capable of excelling beyond those standards? Someday Lyra may decide she wants to be a brain surgeon, or a chemical engineer, or who knows what else. I want her to be equipped with whatever tools and skills she needs for that kind of success. I want to increase her independence and give her flexibility. Whatever she decides for her future, I will do everything I can to help make that possible.

Lyra is an individual. My husband and I are her parents, and we are making this decision for her. It would be unfair to say that what goes for one person with albinism goes for all. I won't criticize parents who choose for their child not to learn Braille, nor will I criticize adults with albinism who don't use Braille. That's their decision. Please respect and understand that, based on her needs as we see them, we are making the best decision we can for our daughter. We think of the old Rabbinical saying, "Don't limit a child to your own learning, for he was born in another time."

Update: Since the original publication of this article, Lyra had a very successful first year of preschool. She is progressing well with print and Braille. She has not shown a bit of resistance to learning Braille and has not developed any bad Braille reading habits. This fall she begins her second year of preschool and will receive even more Braille instruction each week. Lyra will also begin instruction in the use of low-tech magnification devices.

References

Holbrook, M. C., Koenig, A. J. 2000. Foundations of Education. New York: AFB Press.

Merriam-Webster Online. 2009. Disable. Retrieved August 4, 2009, from <http://www.merriam-webster.com/dictionary/disable>.

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