Future Reflections Special Issue on Advocacy
by Michael Gosse
Reprinted from Future Reflections, Winter/Spring 2007
From the Editor: When a student has low vision, parents and teachers often struggle to determine how he/she will best function at school and beyond. Should the child read large print, Braille, or some combination of the two media? Should he or she learn to use a long white cane? What accommodations are appropriate? In this article, Michael Gosse gives advice to the teacher of a low-vision student as she prepares for his IEP meeting.
A few years ago, my sister, Vicky, a middle-school teacher in an upscale district in New England, contacted me for advice. A student with a degenerative eye condition was enrolling in her math class, and she was the classroom teacher representative for the IEP team meeting.
So, why call me? I guess you could say I'm the family expert on blindness. I was born with albinism, and as a consequence I have been legally blind all my life. (Most people with albinism have some degree of vision loss.) True, I didn't deal with my blindness very effectively until I got involved with the National Federation of the Blind (NFB) as a scholarship winner, but that was many years ago. I am past those struggles about whether I am really "blind enough" to carry a cane (sometimes I do, and sometimes I don't) and all that stuff. After I met the NFB, I went on to get my PhD in electrical engineering, and today I make a respectable living as an independent businessman. My wife and I have two lovely daughters, ages four and six, and I'm active in my community. As I state in the letter below, I've served on the NFB National Scholarship Committee for over a decade, and recently I was elected president of the National Federation of the Blind of Maryland.
But back to the call from my sister. Apparently, this student had been in the school system for a while, and as his vision deteriorated, the solution that was applied was to give him a full-time instructional assistant. However, it was becoming apparent that this wasn't such a great idea. The aide went with him everywhere, took notes for him in class, ate lunch with him, and--well, you get the picture. My sister told the parents and the school administrators about her brother and his involvement with the NFB, and they seemed eager to hear my perspective.
I'm sure my sister was hoping that I could guide her, the parents, and the other team members in a different direction. I tried not to disappoint her. With a few minor edits, here is the letter I wrote.
I decided that I needed to write down my thoughts on your upcoming IEP meeting involving a blind student in your class. Feel free to bring this note to the IEP meeting and share it with the group.
One of the biggest challenges in educating blind children is making sure that they are being taught both academically and socially at an age-appropriate level. As you go through the IEP process for the next school year, I believe that this has to be the central focus of the discussion.
At the age of fourteen, most of your other students function in an independent fashion. They get themselves from one class to the next, or they face the consequences. They take their own notes, they do their own homework (with help from whatever sources they are able to assemble), and they make their own friends. However, the reality is that a blind student in a public school setting is at a severe disadvantage unless he or she has the necessary skills. The trick is to balance the need to pass the academic requirements for an education in eighth grade and the need to acquire special skills that will lead to success later in life. This is not a decision that needs to be made for 99 percent of the students you will face, but the IEP process forces this decision to be made for special-needs students, and for a blind student in this particular case.
I know personally totally blind people who travel the world, who run businesses, lobby Congress, teach math, raise families, develop products, write federal policy, and climb mountains. Each one of these individuals was given training and opportunity to excel on his or her merit. I also know blind people who can't leave their homes without a guide, who can't cut their meat at dinner, who still live with their parents at age fifty, and who have no social skills at all. Each one of these people was coddled and prevented from advancing beyond the limits placed on him or her by well-meaning caretakers. I personally took advantage of similar situations as a child. The system wasn't that hard to figure out. What saved me was that I couldn't play both sides of the game. You can't tell your parents that you should be allowed to cross the street to go to a friend's house if you just told them that you couldn't do your book report without help. So my personal drive for independence prevented me from hiding behind the helpless-blind-child routine.
At fourteen, it is time for any blind student who is going to be successful in life to establish independence. But without the necessary skills, tools, and opportunity, this is an impossible task. The IEP and all its participants need to play a critical role, even if it is an uncomfortable one. Here are my recommendations.
There will never be a time when the transition to independence is easy, comfortable, or convenient. But adolescence is a difficult transition for this very reason. Blindness builds character in ways that many of the other students will never have the opportunity to experience.
Many of the players in the IEP process will undoubtedly think that this blind student is too young, too naive, and too vulnerable to be cast into the world of independence. But there are only five more years for him to develop independence skills and prepare for college or a career. The next year needs to be a year of transition and support. I fully expect a significant impact on academics that will require, perhaps, the need for a tutor and a network of ad hoc counselors. But a clear distinction needs to be made between support and independence. All of your students need support, many need tutors, and some need counseling. The IEP team must be observant, flexible, and resolute.
As you know, I served for ten years as a member of the National Federation of the Blind Scholarship Committee. I can tell you firsthand that academics are not correlated strongly to success for blind people. By far, blindness skills, independence, and leadership are the trademarks of a successful blind adult. It is unfair that blind students need to excel beyond their sighted peers, but that is the reality. That is the reality that the IEP team must come to terms with and implement.
I hope this letter provides some insight, direction, and guidance. Most of all, I hope that my experiences can help an insecure, unskilled blind kid become an independent, competent blind adult.
On a personal note, my itinerant teacher stopped coming when I left sixth grade. I remember vividly the discussion with the teacher that she was not going to come anymore. I was heartbroken. I felt cast aside. I was afraid. But I survived and even thrived because I had been provided with the tools and skills of independence.