NFB-NEWSLINE® number: 1-888-882-1629THE BRAILLE MONITOR
Barbara Pierce, Editor
Published in inkprint, in Braille, and on cassette by
THE NATIONAL FEDERATION OF THE BLIND
MARC MAURER, PRESIDENT
National Office
1800 Johnson Street
Baltimore, Maryland 21230
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Web site address: http://www.nfb.org
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Letters to the president, address changes,
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Monitor subscriptions cost the Federation about twenty-five dollars per year. Members are invited, and non-members are requested, to cover the subscription cost. Donations should be made payable to National Federation of the Blind and sent to:
National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230
THE NATIONAL FEDERATION OF THE BLIND IS NOT AN ORGANIZATION
SPEAKING FOR THE BLIND--IT IS THE BLIND SPEAKING FOR THEMSELVES
ISSN 0006-8829
Vol. 45, No. 9 November 2002
Contents
People of the Book Lose the Book and Much More:
New Leadership and No Vision
at Jewish Braille Institute of America
by Buffa Hanse
Just Saying No to Reading Braille (Part One)
by Sheri Wells Jensen
Blind Kids Lost in the Educational System
by Caroline Rounds
Sight Unseen
by Michael Abrams
Orientation Centers as Cutting-Edge Empowerment Stations
by James H. Omvig
Freedom for the Blind:
A Review
by Alan Myklebust
Just Their Dad
by Chris Kuell
Open Letter to a Blind Person:
Choices That Can Change Your Life
by Michael Bullis
From the Technology E-mail Basket
by Curtis Chong
Hey, Mom, the Hunter Ed Guy Is Blind
by Jim Marks
The 2003 National Federation of the Blind
Scholarship Program
Recipes
Monitor Miniatures
Copyright © 2002 National Federation of the Blind
[LEAD PHOTO: On Wednesday, August 21, dozens of Federationists went out to the ball game at Oriole Park at Camden Yards. The occasion (in addition to the Orioles game with the Devil Rays) was the presentation of the 2002 Robert Dole Award to NFB President Marc Maurer. Presented annually by the Volunteers for Medical Engineering (VME), Inc., and cosponsored by Comcast, the award has been presented annually since its establishment in 1998. According to Albert Ruppersberger, award chair, the Robert Dole Award was established "to honor and recognize the many individuals who fight to overcome significant obstacles every day in their lives and to honor one special individual who exemplifies that struggle toward significant accomplishment."
Federationists displayed an NFB banner in the stands while the award ceremony was taking place and between innings. Dr. Maurer's picture and the banner were projected on the park's electronic bulletin board. All in all, it was a festive evening and a well-deserved award.]
[PHOTO/CAPTION: The Robert Dole Award presentation took place on the field shortly before the Orioles game began. The Orioles mascot waves at the camera during the awards ceremony. Left to right the participants are Al Ruppersberger, award chair; Dr. Michael Weinrigh, chair of the Volunteers for Medical Engineering, Inc., board of directors; John Staehlin, founder and president of VME; and NFB President Marc Maurer.]
[PHOTO/CAPTION: Buffa Hanse]
[PHOTO/CAPTION: Jacob Fried]
[PHOTO/CAPTION: Gerald Kass]
People of the Book Lose the Book and Much More:
New Leadership and No Vision
at Jewish Braille Institute of America
by Buffa Hanse
From the Editor: Buffa Hanse holds a Ph.D. in comparative literature and is a graduate of the Louisiana Center for the Blind. She teaches Braille at the Kentucky Department for the Blind and is an active member of her local Jewish community.
Since its founding in 1931 the Jewish Braille Institute of America (JBI) has been the leading agency providing services to the Jewish blind in the U.S., Israel, and the world. In the view of many in the Jewish blind community, recent changes at JBI demonstrate declining services and decreasing respect for blind people. Because this community is relatively small, a number of those whom I interviewed were unwilling to make comments for attribution. I have been careful to check facts from at least two sources, except when they are part of a conversation reported by one participant. Here is the story.
Jews are known as the people of the Book since the Torah, the five Books of Moses, plays a central role in their religious tradition. According to the Talmud, a record of rabbinic thought and interpretation, wherever possible a Jew should live in a community containing at least these three things: a Jewish cemetery, a doctor, and a house of study. Without these a Jewish community cannot exist. Today books are of course necessary for study.
Jews are also obligated to provide good deeds and charity to those in their community and beyond. The late-twelfth-century philosopher Moses Maimonides lists a number of degrees of charity or acts of righteousness. The eighth and highest degree among these is to provide money, interest-free loans, gifts, and tools so that someone can provide for himself or herself. All Jews, no matter how limited their resources, are obligated to engage in this outreach without embarrassment to either party. Gifts are often provided anonymously or in person with a matter-of-fact respect. In this context it is no wonder that the Jewish Braille Institute of America has a seventy-year history of providing Braille, audiotapes, and much more to blind Jews and non-Jews everywhere.
In October of 2000 Gerald Kass, the executive vice president of JBI and a familiar figure to National Federation of the Blind convention goers and Monitor readers, retired for medical reasons. Dr. Ellen Isler, who herself admitted in an interview with the Braille Monitor that she has no experience in the blindness field, became executive vice president in January of 2001. Now that JBI has become the first, but not the only, affiliated library of the Library of Congress's National Library Service for the Blind and Physically Handicapped (NLS) and Isler has had over a year to establish her interests and priorities for JBI, we thought a look at this library was in order.
Throughout its history JBI and its staff have had a close relationship with the NFB. Our founding president, Dr. Jacobus tenBroek, was a longtime friend and colleague of Dr. Jacob Fried, who was executive vice president of JBI for over twenty-five years. Everyone whom the Monitor interviewed--including such giants in our field as Dr. Abraham Nemeth, who knew the man--said that Jacob Fried was a Mensch, a real human being who goes above and beyond what is called for to serve his fellow man.
Dr. Fried spoke about NFB philosophy at our conventions. He and JBI were among the lonely few agencies that stood with the NFB during our civil war. And, as Paul Kay (attorney, former JBI board member, and Federationist) warmly recalls, "Jacob Fried marched with us in protest to the National Accreditation Council for Agencies Serving the Blind and Visually Handicapped (NAC). He marched as one of us on Madison Avenue in July of 1973." Whether it was because of liberal Judaism's tradition of solidarity with other minorities, his friendship with Dr. tenBroek and later Dr. Jernigan, his own experience as a minority group member, his visual impairment (though not blindness), his research as a sociologist, or all of these, Jacob Fried understood and respected blind people as equals. He was our colleague, our friend, and a partner in our movement. He brought joy and pride to our NFB family. Dr. Jernigan even quoted Dr. Fried's research in his 1963 address "Blindness: Handicap or Characteristic."
As Federationist Rami Rabby noted, though not "as enamored of our movement and the collective action of the organized blind," Gerald Kass, who had been Jacob Fried's assistant before succeeding him, also understood the social stigma the blind must live with and change in our daily lives. He would help individual blind people whenever and wherever he could. Even before becoming a Jew, this reporter, unemployed at the time, wrote a letter enclosing a résumé to Gerald Kass because she deeply respected JBI and Judaism. She was astonished to receive a warm, individual response requesting to keep the résumé for a time to look for possible employment for her.
Kass attended our conventions and kept us abreast of the activities at JBI. Both Fried and Kass engaged blind people and understood that the major problems of blindness are not the inability to access print or drive a car, but result from society's negative attitudes about it. Jacob Fried shared a collective vision with the blind, and Gerald Kass shared the individual struggles against discrimination and social stigma that we encounter. With two such predecessors and Dr. Isler's administrative ability, what more could JBI and the blind have wished for? But let the facts speak for themselves.
See if you agree with Federationist and JBI Board Member Ed Lewinson that Dr. Isler is running JBI like "any large agency" and "with no knowledge of blindness." Many members of the JBI staff are quite knowledgeable. Pearl Lamm's detailed knowledge of the Braille and audiotape library of Judaica comes to mind. But increasingly in recent times blind patrons have found themselves belittled and their requests mocked. For example, one Federationist requested a scholarly edition of a volume of the Talmud and was told abruptly, "We don't have books like that," rather than being given the procedure for requesting that a sacred text be produced in Braille.
David Stayer, a longtime borrower, had to wait two years to receive a songbook. He was also told condescendingly when he requested two copies of his orthodox prayer book, one for use in his synagogue and one for use in his daughter's, that rabbis wouldn't provide a place to keep the books. In fact, his rabbi had already said he would. Though perhaps Dr. Nemeth's work structuring and translating the Art Scroll Prayer Book solves the problem, David also commented that in the Jerusalem Prayer Book, the only orthodox one now available to him, he cannot participate in parts of the religious services because the book is incomplete.
Another Federationist, Ruth Sager, notes that, when dealing with JBI staff, "I feel as though they are more concerned to establish that I'm a patron than to answer my question. I feel like an intruder rather than an active reader." She and others have also noted that it is sometimes difficult to get the books one has ordered. Though such specific incidents may seem small to Dr. Isler, they aren't in the lives of blind people; they set a tone and demonstrate a disrespectful and patronizing attitude, an attitude of doing for rather than working in partnership with the blind.
Here's yet another example. Recently JBI began circulating the Jerusalem Report. Rather than producing all the issues for a limited time or waiting until the money was in hand to begin full production, Dr. Isler told her staff that only select issues would be produced. When Federationist Brad Greenspan complained, suddenly the money for full production of what Dr. Isler would later characterize as "quite a popular publication" began appearing. When asked why only select issues had been produced and if she thought a library for the sighted would choose to provide only selected issues, Dr. Isler told the Monitor that she had been "testing the market" and that she hadn't had enough money in that year's budget for all the issues. Yet in the same period the 2001 annual report shows that hundreds of thousands of dollars for partnerships and outreach were available. Isler apparently ignores the underlying assumptions at the root of actions like this.
Here is a more difficult yet emblematic example. It shows the need professionals, newly blinded seniors, and their families have to receive education regarding skills and healthy attitudes about blindness. Recently sources close to JBI reported to the Braille Monitor that JBI staff have produced an abridged large-print Haggadah, a brief version of major parts of the Passover story. When asked why a compilation and not the entire Haggadah was produced, Dr. Isler explained that it was because social workers working with the "frail elderly blind population in nursing homes felt it would be easier for them to handle" than the entire text.
Of course Federationists are happy for these seniors to have access to a Haggadah of any kind for Passover and to have the joy of celebrating the Seder, no matter how incomplete. But these elderly adults themselves, their families, or advocates chosen by them should have made the request, not professionals who assume they know what's best, well-intentioned as they may be.
The experience of Federationist Rami Rabby, a U.S. Foreign Service Officer and now former JBI board member, demonstrates just how little knowledge Dr. Isler has of blindness and how problematic her limited knowledge has been in achieving her vision for JBI--reaching the underserved elderly blind Jewish population in retirement centers and nursing homes. Of course NFB members are pleased that older blind people receive services from JBI, but we also know that in order for them to receive quality services, they must be grounded in an understanding that the social stigma of blindness is the most significant problem, not loss of sight.
Dr. Isler and Rami Rabby first met at the board meeting at which Dr. Isler was presented as the search committee's choice for executive vice president. Incidentally, the search committee had refused to interview a qualified blind person for this job. (All of the executive staff are sighted.) When Dr. Isler gushed about working for JBI being the most marvelous achievement she might now imagine, Mr. Rabby asked why, in light of current events, she wanted to work for JBI rather than for the Abraham Fund (her previous employer), an organization dedicated to the resolution of problems between Arabs and Jews in Israel. Dr. Isler didn't answer this question, but she did explain that the foundation of her outreach to the older blind Jewish population should be based on ideas such as calling them "visually impaired" rather than blind.
When discussing her planned outreach with the Monitor, she said that newly blind seniors don't think of themselves as blind people, so they don't know about available resources. As far as this argument goes, she is correct. But because these newly blind adults don't think of themselves as blind, they don't have a chance to learn that blindness can be just another characteristic. As Mr. Rabby tried to explain to her, the real problem of blindness is the social stigma attached to it. Older sighted Jews are afraid of losing their sight and, sometimes unconsciously, as a result don't include their blind peers in their activities.
After this first unfruitful meeting with Dr. Isler, Mr. Rabby waited some little time, then invited JBI President Barbara Friedman and Dr. Isler to meet with him privately in an attempt to help them understand that the real problem of blindness is people's attitudes towards it rather than the simple inaccessibility of reading material. But to no avail.
When the Monitor reporter asked about this social isolation of older blind Jews and the attitudinal problems associated with blindness, Dr. Isler said: "They're not isolated from Jewish community activities. The Jewish community is making a great effort to include everyone in its community activities. We are a cultural organization, and what we are doing is trying to give them the tools, mostly through audiotape and large print, to maintain the activities in which they were already engaged. That is, to make it possible for them to participate in synagogue life, to participate in book clubs, to participate in continuing education, and so on. We are a cultural organization; we are a library. When they ask, or we think it advisable, we refer them to rehabilitation services, to the Lighthouse, and to other organizations, to the Jewish Guild for the Blind, but we don't provide those services. We are a library and a cultural organization."
Many communities are probably open to blind Jews, as this reporter's is, but how many engage blind Jews fully as movers and shakers, not just participants or objects of charity? As all Federationists know, before one can fully participate in activities, one must feel comfortable with one's blindness rather than sweeping it under the carpet with a label such as "visually impaired" or with no label at all. Without an understanding of the attitudinal problems of blindness, inclusion will be forced, often an obligation, not emerging from the natural course of engagement and conversation.
Soon after Rabby's abortive discussion with the JBI leadership, in a committee meeting a discussion of the focus of JBI outreach and Dr. Isler's new vision occurred. In this discussion Myron Kaplan, New York attorney and JBI board member, rudely told Mr. Rabby not to "torpedo" Ellen Isler's program. When we attempted to confirm this remark, however, Mr. Kaplan, through his secretary, referred us to Ellen Isler, who had not been present and who said she had no knowledge of this rather condescending and overbearing comment.
Recognizing that it was highly unlikely that one sighted trustee would make such a comment to another, Mr. Rabby walked out of the meeting and never attended another meeting of the JBI board. As he was waiting for a few months to see if anything about JBI would change, Rabby received information about an institutional name change and a statement of monetary expectations for board members. Mr. Rabby resigned in October 2001. Though Dr. Isler said she respected Rami Rabby's priorities--the priorities of the NFB--she would not say what she thought they were. But she made it clear they are not those of JBI. We are left to conclude that empowerment, rights, and responsibility through collective action; quality services; research; and training are no longer priorities of the venerable JBI.
As for the monetary responsibilities of JBI board members, Dr. Isler and other sources close to JBI confirmed that, by and large, board members are expected to contribute $5,000 annually to JBI. Dr. Isler insisted that some on the board have other talents (for "talents" read "are blind and therefore not expected to contribute") but that this distinction does not create a two-tiered board of trustees. With a 70 percent unemployment rate among the working-age blind population, how many blind people could meet this expectation? Dr. Isler also insisted that a monetary contribution is a normal expectation for boards of trustees for all nonprofits.
Dr. Isler and the JBI board of trustees have approved a name change, a change which Dr. Isler says reflects the wider scope of the international work JBI does. The corporate name is now JBI International, Inc., and below that appears "founded as Jewish Braille Institute in 1931." In an attempt to understand what the initials "JBI" now stand for, the reporter asked for clarification. Dr. Isler's reply was simply to repeat the entire name. Of course the name should reflect JBI's broader scope, but the title Jewish Braille Institute International would have accomplished that goal without compromising the organization's name recognition. The actual truth would appear to be that, though the powers that be do wish to have the organization's name reflect its broadening scope, they would also very much prefer to sidestep the word "Braille" and its necessary reference to blindness; otherwise, why the shift to initials in the title and use of small print beneath?
If we briefly examine JBI's 2001 Annual Report, some insights become obvious. On the front is written "Annual Report 2001, Focus on JBI." In very small letters in the middle of "Focus on JBI" (which appears to be in an eighteen-point or larger font) this text appears: "News from the Jewish Braille Institute of America." Beneath that is the slogan "An International Jewish Agency Meeting The Needs Of The Visually Impaired And The Blind."
On the back cover above the address label appears "All the books you've always wanted to hear." Below that is a picture of a man with words coming out of a myriad of books he is holding and going in a circle to his ears. The man is smiling. To the right of this large image are the words "The world's largest library of Jewish interest books and magazines for the visually impaired." The address and phone number also appear. Below the picture the text reads, "JBI: Jewish books for the Visually Impaired." In a block in the bottom corner appears "Focus on JBI is published by the Jewish Braille Institute of America." The reader's eye is drawn to the man and the ideas in the middle of the page.
A quick scan of the text inside reveals that the words "visually impaired" appear three times as often as the word "blind." No mention is made of the participation of blind people in the seventieth anniversary gala held at the New York Public Library, although the great Jewish authors who were present are mentioned. As one source close to JBI wryly commented, the staff apparently saw little reason to invite or mention blind people in a gathering of 120 distinguished supporters. Certainly it was appropriate to highlight the gala and the new board members in this report, but surely an agency sincerely committed to serving blind people would have demonstrated its relationship with the blind community, not just present the donors who contribute to the poor visually impaired and blind.
Unfortunately this underlying disregard for blind people extends to individual JBI staff and fundraising. For example, a senior blind employee was suddenly demoted from management, her salary reduced by a third, and her assistant removed, according to sources close to JBI.
Also several sources around the country have told the Monitor that JBI fundraisers have made requests allegedly for production funds to transcribe Hebrew text into Braille. They later learned that the funds raised had been used solely for outreach and not to produce Braille at all.
The Jewish Braille Institute has recently become the first of several NLS-affiliated libraries, according to Frank Kurt Cylke, director of the National Library Service for the Blind and Physically Handicapped (NLS). (See also the "In Brief" section of the September/October issue of Braille Book Review.) According to Dr. Isler, this partnership will allow NLS to do joint outreach and to work in the development and use of the digital Talking Book. Although sources close to JBI suggest that other in-kind services such as cheaper tape production would be available, Dr. Isler did not confirm this. Books from JBI have always been available through the NLS cooperating libraries program. Although JBI will retain its audiotape books, its 8,000 titles and 70,000 volumes of Braille Judaica were acquired outright by NLS, according to Isler and Cylke, although no money changed hands.
Under the new system books may be requested through either JBI or NLS. New patrons will be eligible to receive books automatically from either library when one institution approves their eligibility for service. This is all well and good, assuming that the communication needed to make such coordination effective actually occurs.
At one time JBI's complete library was located at its headquarters in Manhattan. But because of the storage expense the Braille collection was moved to upstate New York. When a Braille book was requested through JBI, it was sent from storage to JBI and then to the reader. A standby library of sacred Braille texts and the most popular of the other Judaica was kept on hand at JBI to supply the most often requested books. The tape library, however, has always been located at JBI in New York City, where, as it has grown, it has clearly displaced the Braille collection. This tape collection will not be affected by the change. But in the JBI Braille collection, only Braille prayer books, songbooks, and the like will now be kept at JBI.
All sources agree that approximately two years ago discussions began regarding the storage--"warehousing," in Dr. Isler's words--of the Braille library. When asked if she had explored other options to store the Braille, Dr. Isler said that she had considered NLS a perfect fit because they are the national library of record and JBI is the national library of record of Jewish interest. Apparently no effort was made to consult blind people, who clearly no longer have any real say in policy matters at JBI.
The Braille books will be available for circulation in approximately six to eight months from the multistate center where they will be stored, according to Cylke. Although Braille books are not generally available overseas from NLS, as Cylke confirmed this summer, Dr. Isler assured the Monitor that JBI would receive the foreign request, then request the book from NLS and send it from JBI. But this solution to the problem of filling international requests for books requires an additional level of bureaucracy, which is certainly unfortunate for borrowers.
When asked why she gave the Braille library to NLS, Isler made it clear that she believes the money for "warehousing the Braille" could be better spent on production and on outreach. But let her explain her attitude toward Braille since she doesn't think so-called cultural organizations need to worry about nurturing healthy attitudes about blindness. This is what she says:
People who lose their vision, people in their sixties and seventies cannot learn Braille. It is pragmatically impossible. I have been told that it is very difficult, especially difficult, even for older younger adults. It not only presents the problems of learning the equivalent of a foreign language, but there is a loss of sensitivity in the fingertips after a certain age that makes it especially difficult. . . . The easiest way for seniors who are losing their vision to replace their lifelong reading habits is by the use of audiobooks and, when possible, large print. . . . But I'm also told that even those who are born blind depend more and more on audio resources and are making less use of Braille.
Isler's reasons for giving JBI's Braille to NLS and her attitudes about it are clear: to raise money from the social-service organizations serving older Jews (see the partnerships in the 2001 Annual Report), to increase the number of tape and large-print subscribers, and to de-emphasize Braille--the only true medium in which a blind person can be literate. And all this is being done with little or no consultation with the Jewish blind community.
As Dr. Harold Snider, chairman of the International Braille Research Center, says, "I believe anything that denies blind people literacy, the right to read and the ability to read, is negative--whether it's denying them Braille or tape, but particularly the right to read Braille books. JBI has a unique collection on Judaica, now given to NLS. It has abrogated its responsibility to make new Braille books on Judaica available, except by request. Such an action continues a negative trend occurring in this country in which people who are sighted and don't know anything about blindness and Braille think you can throw it away because it's an anachronism."
In a discussion of JBI and Braille literacy, Nadine Jacobson, president of the National Association to Promote the Use of Braille, said, "Braille isn't outmoded; it's true literacy." Blind Jews can read to their children and grandchildren; a congregant can read from the Torah or read a speech at his or her local Jewish Federation meeting. One needs Braille to do a close textual reading (a Jewish tradition long before the printing press) at the same time as one's sighted colleagues.
In the past books were added to the Braille Judaica collection in two ways. Significant and representative books were chosen by knowledgeable JBI staff, and books were requested by borrowers. For the foreseeable future books will be added to the collection only upon request, according to sources close to JBI. In a time when technology makes it entirely possible to produce paper Braille upon demand, liquidating and fragmenting a living library is ludicrous. Although Isler says there are ongoing talks about preserving the Braille Judaica, much of it hand-copied, Cylke has made it clear that the major NLS collection will be preserved before those of the affiliated libraries.
The people of the Book are losing the Book, and much more. As Dr. Isler pointed out, "When NLS did a study, they found only two duplications in JBI's entire 8,000-title library. They were very glad to include these titles in the Union Catalog." Such results are no surprise. The primary purpose of the NLS collection is to meet the recreational needs of the general blind population, and the purpose of the JBI library has been to provide a representative selection of published Judaica, as well as requested titles.
As Arie Gamliel, the former director of programs for blind children in the Jerusalem Public Schools and a longtime Federationist, says of recent changes at JBI, "It is a tragedy and . . . undoes the work of the great founders of JBI."
So be vigilant, Federationists. NLS has acquired Braille from the Jewish Guild for the Blind, JBI, and who knows who else. Before we're through, the libraries at our training centers, the National Center for the Blind, the National Research and Training Institute for the Blind, the Iowa Department for the Blind, and the shrinking Braille libraries at the nation's residential schools may be the only independent collections in the country.
Jews are commanded to live in hope; so it is that we in the Federation hope that the beta testing of Duxbury's Hebrew Braille translator will be completed and fully functional within a year as Isler projects. When asked about whether JBI has good relations with major publishers, she responded affirmatively, mentioning the Jewish Publication Society. In this spirit one hopes it will take only five years to receive the new Tree of Life Chumash, a Bible and commentaries used for major study and in services. The fourteen years required to complete the work on Sim Shalom (a major prayer book) made the book outdated in many synagogues which have now adopted newer editions or other prayer books.
To save time, rather than having such Braille books requested, the major texts and books of the four major movements in Judaism should be translated into Braille in consultation with the publishers, prior to print publication. It is a tall order to be a complete Jewish Braille Press and a social service organization simultaneously. And it seems rather obvious that Dr. Isler knows JBI isn't equipped to provide thorough, quality, multifaceted services in the United States, Israel, Europe, and the former Soviet Union. Hence, from her point of view, Braille is used the least, so valued the least. We may dream of having complete, comprehensive services for everyone. But does it serve anyone well to provide incomplete services to everyone?
Upon hearing of the choices JBI has begun to make, Dr. Frederic K. Schroeder, professor and former commissioner of the Rehabilitation Services Administration, agreed that what he said in his speech, "Research and Future Opportunities for the Blind," at this year's NFB national convention is true of JBI's choices and about the power of Braille literacy. This power should be a birthright and an initiation for the blind, Jews and non-Jews alike. But let Dr. Schroeder define this power and responsibility: "The power of collective action, the power of self-expression, the power to refute the artificial barriers arising out of myth and misunderstanding--in short, the power that comes from having our fundamental equality supported by our research, our technology, and our training."
Why should this power and the true empowerment of life be denied to older blind Jews in the name of "what's easier" or "done most often" in sighted professionals' opinions? It shouldn't. So let a reader who grew up with JBI--Adrienne Asch, a professor of bioethics at Wellesley College--summarize the professional and personal situation:
Ever since I was small, the Jewish Braille Institute was a part of my life, and a part that indicated that being Jewish and blind weren't at all incompatible. I had prayer books, books for Sunday school and Bat Mitzvah, and a huge library of books, more than I could ever read, on the history and religion of the Jewish people. Jacob Fried wrote about the NFB with great admiration in the pages of the Jewish Braille Review in the 1960's, and he understood the philosophy and civil rights spirit of Jacobus tenBroek and saw them as in harmony with the best of Jewish ideals.
The JBI has not always lived up to its espoused philosophy and mission, and that is a great tragedy. But its library and its mission should be preserved for Jews the world over . . . and they should be updated as Jewish thought changes. Any NLS patron already had access to these books, because the library and all of JBI's services were available to the Jewish and non-Jewish blind. It is good that the materials will now be listed in NLS publications, such as the Web site and Union Catalog, but they should be preserved and housed at the JBI, where librarians knowledgeable about Judaica could help patrons discover the richness of this material.
In this new year 5763 according to the Jewish Calendar and in the spirit of repairing the world (a Jewish obligation), the Braille Monitor urges Dr. Isler to visit our NFB training centers, to come to our conventions, to look to Jewish blind professionals who work with seniors such as Ruth Sager to understand quality services. Become a true partner with the blind. We can begin our relationship anew, but only if it is an equal one based on dignity, respect, an understanding that blindness, and all disabilities for that matter, are fundamentally problems of attitude and perception and not problems resulting from the physical characteristic of blindness. For it is in the spirit of Moses Maimonides' eighth degree of charity/righteous actions that the JBI was founded, and it is in this spirit in memory and celebration of Jacob Fried that it should continue.
Just Saying No to Reading Braille
(Part One)
by Sheri Wells Jensen
From the Editor: Dr. Sheri Wells Jensen teaches in the English as a Second Language Department at Bowling Green University in Ohio. She is interested in psycholinguistics and language preservation. As a Braille user herself she thought that Braille Monitor readers would be interested in her observations and reflections on Braille literacy from a somewhat unusual perspective. This is what she says:
Growing up in the Midwest in a middle-class home, I took reading for granted. Everyone around me read. My girlfriends read love stories; my brothers read dopey boys' stuff like motorcycle and car magazines; my father read the newspaper; my mother read everything (lots of it out loud to me); and I read all the science fiction I could get my fingers on. The fact that my books were larger than theirs simply meant I had more trouble climbing the maple tree in our front yard while carrying one of mine.
Learning to read was neither optional nor especially interesting. It was just a thing you did as part of the natural order, like learning to ride a bike or to cross the street. It was so woven into the fabric of my culture that as a youngster I never imagined there were people in the world who could not read at all. When I did find that out (probably sometime in late elementary school) I had trouble imagining how exactly you could manage a happy, efficient life without writing things down and reading things other people had written for you. I could never have imagined deliberately choosing illiteracy, but this is exactly what I found more than once after graduating from college. It was a shock that took me a while to get over.
Undergraduate diploma in hand, I went off to join the Peace Corps. After the initial three months of training, I was thrilled to find myself in a tropical coastal city (a twenty-five-minute, hair‑raising bus ride from the best beaches you could ever imagine), working at a small girls' high school. Since many of these young women were the first in their families to get a high school education, they were eager students. They were being trained to take their places in the emerging Ecuadorian middle class and would probably get jobs as secretaries or clerical workers of some sort in small businesses. They'd make enough money to live comfortably in the city. One or two of them might even go on to college. For many of their families it was like a dream coming slowly true around them.
My job was to teach them enough English to answer a telephone, take simple messages, make an appointment, or at least apologize nicely for not being able to do these things and then pass the call along to someone who could. It was good work but not wildly exciting. So I was delighted a few months later to find that we would be putting English lessons on hold for a while in order to participate in a national literacy campaign.
The implementation of the campaign struck me as tremendously clever. It took advantage of the enthusiasm and energy of students like my girls, children of the relatively wealthy. Although poor by U.S. standards, the young women at my school had enormous advantages by local standards. After all, they were well fed and secure and were going to graduate from high school in a country where many country people (campesinos) never made it past grade school.
All high school students in the country were placed in pairs. The government plan specified that each pair be matched with a campesino who could not read. In order to earn that prized high school diploma, they would teach this person to, sharing their knowledge, passing on the gift of literacy.
The high school students were trained in the basics of reading instruction and sent on their way. My girls joined the campaign with a particular mission. I had taught them the basics of Braille and techniques for getting started, and they were matched with blind campesinos. Except for the fact that they were teaching Braille, our girls received the same training as the other high school students.
It was person-to-person, Ecuadorian-to-Ecuadorian, making connections across class and lifestyle. I thought the plan was brilliant, and I sent my girls out with high hopes.
Then I heard a disturbing story. It seems that a pair of high schoolers (mercifully not mine), armed with their picture books and alphabet cards, went out into the countryside to meet their assigned campesino. Most likely they'd had to travel for an hour or more on a jouncing, jolting, open bus, hanging on for their lives as the driver gambled his way along the hills on the less‑than‑adequate roads. They probably arrived hot, dusty, and tired. Then they were introduced to their campesino as planned. They were told that the farmer would be happy to learn to read. He was ready to start right away. He was eager. He'd be delighted, in fact, assuming the kids would pay him. He was willing to accept payment in cash or in chickens, but he did expect to be fairly reimbursed for his time.
Yes, you read that right. The illiterate campesino was charging for his services as student. You might think of it as sort of a reverse tuition. If the privileged city kids wanted to graduate from high school, he figured they'd fork over the money straight away.
As you might imagine, I was appalled. I started making a list of names I would like to call the campesino if we ever met: crass . . . ill‑mannered.... mercenary . . . I stopped making the list when I got to the word "ungrateful." I'd certainly heard that one before. It forced me to consider the situation with more care. What was up with this guy?
Campesinos are smart. They may not have formal education, but they know the land in all its phases and seasons. They have a savvy survivor's grasp of economics too. They know what to plant and how to sell it and how much they need to produce to feed their families. And they work hard. Their land is relatively poor and their equipment meager. They make up for this with sheer investment of sweat. They are rightfully proud too. At the end of each day they see what they have accomplished and know their children will eat. Still, why would such a person be indifferent to the gifts of literacy?
There are several reasons. First, his realistic grasp on reality tells him that he has no immediate use for such things. He has no letters to write, no books to keep, and no street signs to read. He gets the news he needs from passersby or from the radio. There is no public library from which he can check out books. If he had money for books, he has nowhere to buy them in his little village. He doesn't need to keep a calendar; his schedule is not that tight, and he can keep track of the birthdays or religious festivals important to him. In a small village everyone knows everyone else's business; if he forgets something, his uncle or sister or neighbor will remind him. He doesn't have to read recipes; he knows how to cook the simple food his family eats. There is no need for academic work or note taking. If he wants to write a poem or a story, he simply makes it up and tells it to someone. If he or his audience remembers it, it was a good story, and it will be told and retold.
Second, he has a real appreciation of his free time. After a hard day of work, he wants a cool drink and a hammock to stretch out in. He wants to spend time joking with family and neighbors, catching up on the day's events, playing with his children, enjoying the sunset, or staring out across the ocean or up into the mountains. Why would he want to use this precious time learning to read when he feels no need for it? His life is complete and satisfying.
Finally, in his village there is no social expectation that he learn to read--no stigma for illiteracy. He is not ashamed of not reading. It would be like you feeling ashamed that you cannot ride a unicycle. You might grant that unicycle riding would be interesting, but you probably don't feel bad that you can't do it: nobody else does, after all. I could point out to you that there are hundreds of jobs in circuses for good unicycle riders and that you could entertain yourself and your family, but you're still not going to dash out and sign up for lessons even if they're free. On the other hand, if I (for my own twisted reasons) want to pay you to be my unicycle student, why not? You probably aren't vehemently opposed to the idea, just indifferent.
As an educated middle-class American, it took me a while to get used to this idea. But, when I finally began to be truly comfortable with the fact that not everybody wants what we think they should want, many things about living in Ecuador began to make more sense to me.
A few years after I returned from Ecuador, I was reminded of this experience by a conversation with a friend. I was talking to him about why as a blind person he should learn to read Braille. Like the farmer he simply did not feel any lack. His affairs were in order and his life full and productive. From my perspective I could clearly see how his circumstances would be improved by learning to read, but he did not and does not live in my world.
I began to think about Braille literacy campaigns in a new way after that. I wanted to find out how a person lives so that Braille is not missed and what perceptions, assumptions, and coping techniques make it seem reasonable to go without reading. I thought, and think still, that understanding these things would make it easier for us to promote Braille to nonreaders.
In an attempt to find these things out, I spent a few months of spare time talking with readers and nonreaders alike. I learned some very interesting things. What they are and what implications they have for Braille literacy will appear in part two of this article.
[PHOTO/CAPTION: Caroline Rounds works with her class.]
Blind Kids Lost in the Educational System
by Caroline Rounds
From the Editor: The following article is taken from a speech delivered by Caroline Rounds at the National Federation of the Blind of California convention in October of 2001. It also appeared in the spring/summer, 2002, issue of the affiliate's newsletter. Mrs. Rounds is president of the High Desert Chapter of the NFB of California.
Thank you for allowing me to address you with my thoughts and concerns about the education of our blind children in the public schools today. I taught regular education in a school which addresses the needs of children whom we call troubled readers. I have taught fourth, fifth, and sixth graders who are for one reason or another still emerging readers. In this capacity I have attended many literacy seminars. As I sat there I heard over and over again, "All children should be reading by the age of nine." I couldn't help wondering if they really meant "all children," because I know a group of children who are not reading at grade level. That is when my excitement, passion, and enthusiasm began for working with our blind children.
The definition of literacy is being able to read and write with meaning and purpose. As I sat in those seminars, I heard a lot about how children learn to read and why they need to read. We all know that reading is important. We have reading programs in prisons because we know that, if prisoners can read and write, their success rate when they get out of prison is much higher.
The state of California realized that children had to do better before graduation. We had children graduating who could not complete job applications. This problem needed to be addressed in public education. As a result the state of California put a lot of money into this area. As a regular education teacher I was a beneficiary. In that capacity I received a lot of training and eventually became a trainer of trainers who would go on to teach other teachers about literacy. I learned about what that really meant and what the research said. I would like to reflect on the way this relates to our blind children.
First of all I learned that reading is learned. Children do not all of a sudden get it so that one day they can read. Reading has to be taught purposefully. However, if you think of how our blind children are educated currently, the delivery system is limited. Most of our blind children are taught by itinerant teachers. This is a good system if it works. However, in my district it means that our students are visited by an itinerant teacher, maybe two times a week for an hour. They get an aide who comes another two or three times a week for another hour. In our case those aides do know some Braille. So now we are talking four, maybe five hours a week. Sometimes the child has a one-on-one aide who knows no Braille. This person is usually learning Braille at the same time as the student. If literacy is learned, who is doing the teaching of our blind children? If our sighted children were taught reading five hours a week including the code, we would be appalled. I couldn't help wondering who was working with our struggling blind readers.
We learned that the research shows that students need to be fully immersed when they are learning to read. That means print must be everywhere. They need to be exposed, not only to textbooks, but also to menus, newspapers, and magazines. Those are the kinds of things our kids need to see to learn to read. Our sighted children get this immersion; do we really think we are immersing our blind children with Braille during a mere five hours a week?
Another thing the research taught us is that, in order for children to learn to read, they need prior knowledge. If you are reading a story about a sailboat, you have to know what a sailboat is, or the story has no meaning. Sighted children can look at pictures or videos and develop a concept of a sailboat as they read the story. Who is exposing our blind kids to such information while they are reading about the sailboat? It simply cannot be done in five hours a week.
I want to stop to say that there are some very dedicated teachers in the regular education classes who attempt to address the needs of their mainstreamed blind students. I know what that is like because I was one of those teachers. I had a class of thirty-two students who had thirty-two different learning styles. However, in general what happens is that the most needy child with the most severe needs, who should have one-on-one instruction, does not get it. I wonder if the regular ed teacher is handing that blind child a sailboat to feel while the sighted children are looking at a picture? I was really worried about that.
We also learned that, when a child is struggling, early intervention is vital. The research shows that, if children are not reading on grade level by the third grade or the age of nine, they have lost ground for the rest of their reading careers. They will never be as good readers, no matter how much instruction they get. So early intervention for struggling readers is very important.
However, what I was hearing from teachers of the blind was that you cannot expect them to read on grade level because they are blind and they are reading Braille. Therefore they are going to be slower. Already we were losing ground because our children weren't reading at grade level, and no one thought they needed to.
Just about that time, when I was becoming very frustrated, I learned of a parent in the area who was threatening a lawsuit against the district for noncompliance. This parent knew better. She was not going to accept the poor service-delivery model in place in my area. Shortly thereafter, low and behold, the district implemented a full-immersion Braille program, which the teachers had been trying to get for the students for three years. The only problem was that no one was available to fill the position. I was asked if I might be interested in applying. I am very happy to tell you that I have proudly started my new job as the teacher of the visually impaired in Apple Valley, California.
I would like to tell you what I saw when I got into my new classroom. The program I was supposed to implement was set up for eight academic blind Braille-reading children. These students ranged in age from first to fifth grade. What I saw was very frightening. They had problems with social development, daily living skills, and other areas of responsibility, according to the California Guidelines for Educating Blind and Visually Impaired Children.However, when you visit a child for only two hours a week, what do you focus on?
Everyone assumes that everyone else is teaching these skills. I had ten-year-old children who could not tie their shoes. I had a six-year-old child who could not put on her own coat because she could not find the top. And these were bright children. That was what I saw in my first hour in this new position. All my lesson plans went right out the window. I saw children who pounded away on the Braillewriter for a while and then asked, "Did I do it right?" They had no idea if they were writing the words properly. When I taught sighted children, they checked their own work. These children did not know how to. They were not reading what they wrote. They were functioning significantly below grade level. That is how they became eligible for the Special Day Class Program. They were already in trouble. We also know from research that certain reading behaviors must be taught. I found that my blind students had very poor reading habits. They were not sitting erect, their hands were flat on the page, they read with one hand, their other hand was not trailing, and they read one letter at a time. These reading behaviors would have been corrected if someone had been monitoring the students. In regular ed we were constantly nagging students to sit up straight and hold the book upright. No one was doing that for the blind children because the VI teacher was there only twice a week. Since no self-correction was going on, the students were not learning to read and write properly. As I have said, literacy means reading and writing.
We have learned through research that children need modeling as they learn to read. Who better to do that for them than someone who is proficient in the reading and writing of Braille? They need deliberate instruction. We must establish standards to determine the specific things that blind children should know as they learn to read. We must all agree on these as we instruct them. They also need background knowledge. Blind kids do not learn from pictures and videos; they learn from real life experiences. So before they read a story, we need to make sure that they understand the concepts and ideas and items mentioned in that story. That requires a teacher who cares enough to see that the blind child is instructed in reading. Teachers need multiple strategies.
When a teacher visits only once or twice a week, she is only teaching a code. This is the first part, but children also need strategies for learning to read, such as using context clues and talking about what the story is about. They also need appropriate feedback. They need someone to tell them how well they are doing, not just giving them a little pat on the back. Our current delivery system does not make that possible. I am not sure what it will take to make the changes necessary, but as we move forward on the passage of our Braille bill, we need to keep these things in mind.
The title of my talk states that our blind children are lost. The opposite of loss is gain. Our children need to be gaining the skills that they need for literacy. The opposite of losing is winning. We need to make sure that our children are winning functional literacy skills so that they learn to read in time to be able to compete equally and be competitive when they are grown up. The opposite of losing is finding. We need to make sure that our children are able to find their full potential. Even our children with multiple handicaps need to be getting as much Braille as they can absorb so that they will have a wide range of choices in their future too.
I am very happy that I now get to work with blind children. I hope that what I have said here will challenge you. The passing of the Braille bill is exciting, but our work has just begun.
Planned giving takes place when a contributor decides to leave a substantial gift to charity. It means planning as you would for any substantial purchase--a house, college tuition, or a car. The most common forms of planned giving are wills and life insurance policies. There are also several planned giving options through which you can simultaneously give a substantial contribution to the National Federation of the Blind, obtain a tax deduction, and receive lifetime income now or in the future. For more information write or call the National Federation of the Blind, Special Gifts, 1800 Johnson Street, Baltimore, Maryland 21230-4998, (410) 659-9314, fax (410) 685-5653.
[PHOTO/CAPTION: The May family: left to right are Carson, Jennifer, Mike, and Wyndham.]
Sight Unseen
by Michael Abrams
From the Editor: People are forever asking me what I would give to be able to see again, or sometimes they specify to see my children or the autumn colors or a sunset. I find it hard to answer such questions tactfully since the truth is that it might be interesting or pleasant, but it is certainly not anything I would spend much money or give anything else of value to accomplish. Mike May is that very rare human being who has actually regained sight after living most of his life as a well-adjusted blind person. His experience since the surgery that restored his vision, at least in part, should be of interest to all of us and may be instructive to those who still yearn to see what the world is talking about.
Mike has been a pioneer in new-product and business development. He worked for the Central Intelligence Agency as a political risk analyst, for the Bank of California in automating wire transfers and cash machines, and for TRW starting a new business area. His start-up ventures have included developing the world's first and only laser turntable, inventing a portable heating cushion for sports and medical applications, and establishing two companies in adaptive technology for the blind. He founded the Sendero Group to make location information accessible to blind and visually impaired people. Mike and Sendero Group have now joined with PulseData and HumanWare to develop and market the BrailleNote GPS.
Last June Discover magazine (Vol. 23, No. 6) did a story about Mike's experience. Here it is:
Mike May holds the world speed record for downhill skiing by a blind person. In his competitive days he would slalom down the steepest black-diamond slopes at sixty-five miles an hour, with a guide ten feet ahead to shout "left" and "right." The directions were just obvious cues. The rest came from the feel of the wind racing against his cheeks and the sound of the guide's skis snicking over the snow. But May's days as a world-class blind athlete are behind him. He's no longer blind.
May lost his vision at the age of three, when a jar of fuel for a miner's lantern exploded in his face. It destroyed his left eye and scarred the cornea of his right, but over the next forty-three years he never let those disabilities slow him down. He played flag football in elementary school, soccer in college, and nearly any activity that didn't involve projectiles as an adult. He earned a master's degree in international affairs from Johns Hopkins, took a job with the CIA, and became the president and CEO of the Sendero Group, a company that makes talking Global Positioning Systems for the blind. Along the way he found time to help develop the first laser turntable, marry, have two children, and buy a house in Davis, California. "Someone once asked me if I could have vision or fly to the moon, what would I choose," he once wrote. "No question--I would fly to the moon. Lots of people have sight; few have gone to the moon."
Then one November day in 1999 he came back to his senses. At St. Mary's Hospital in San Francisco, surgeon Daniel Goodman dropped a doughnut of corneal stem cells onto May's right eye (his left was too severely damaged to be repaired). The cells replaced scar tissue and rebuilt the ocular surface, preparing the eye for a corneal transplant. On March 7, 2000, when the wraps were removed, May got his first look at his wife, his children, and for the first time since he was a toddler, himself.
Sight restoration is a periodic miracle--both for its recipients and for the scientists who have the privilege of studying them. As early as the fifth century B.C., Egyptian surgeons used a needle to push their patients' cataract-covered lenses away from their pupils, affording them some degree of sight. More recently, in the late 1960's, surgeons learned to remove cataracts with ultrasound. The stem-cell surgery performed on May was developed in Japan and introduced in 1999. Since then hundreds of people have benefited from it. But of all those who have had their sight restored throughout history, only about twenty recorded cases were blind since childhood, and of those, most had less-than-perfect corneas after surgery. When Goodman peered into May's eye after the surgery, he saw a lens that ought to provide crystal-clear vision.
It doesn't--far from it. Pristine as his optical hardware is, May's brain has never been programmed to process the visual information it receives. May still travels with his dog, Josh, or taps the sidewalk with a cane and refers to himself as "a blind man with vision." And that paradox fascinates Don MacLeod and Ione Fine, experimental psychologists at the University of California at San Diego. The speed with which babies learn to understand the world suggests that they're born with the ability to process some aspects of vision. But which aspects, exactly? What is learned and what is hardwired? During the past year and a half, Fine and MacLeod have put May through a battery of physical and psychological tests, including functional magnetic resonance imaging, or fMRI, which tracks blood flow in the brain. The results are opening the first clear view into how we learn to see.
Functional magnetic resonance imaging, here [in an accompanying photograph] being performed on graduate student Melissa Sáenz, tracks blood flow in the brain. UCSD researchers used this same technique at Stanford University, in collaboration with the Salk Institute, to chart Mike May's visual processing after his sight was restored.
MacLeod's laboratory at the university is a labyrinth of filing cabinets, optical equipment, and oddly placed desks. "It's well booby-trapped," he says, steering May toward the first of many tests one afternoon. "But May has an uncanny ability to navigate complicated arrangements." Tall and athletic, with features that look boyishly handsome despite his graying black hair, May would make a good James Bond if not for a few side effects of his blindness. Unlike the rest of his body, his eyelids haven't had a lifelong workout. Perpetually half closed, they lend a stoic blankness to his face that's relieved only by the occasional smile. He has yet to learn facial expressions.
Sitting obligingly in front of an ancient computer monitor, May watches as thick black-and-orange bars appear on the screen. MacLeod and Fine are testing his ability to see detail. His job is to adjust the contrast with a trackball until he can just see the bars. A click on a mouse brings up another set of bars, thinner than the last, and he plays around with those until he can see them too. Although his right eye ought to provide 20/20 vision, in reality it's closer to 20/500. Instead of discerning the letter E on an eye chart from twenty-five feet, May can see it only from two. In the past the blurred vision of people with restored sight was blamed on scar tissue from surgery. But stem-cell surgery leaves no scars. The signals are reaching May's brain, but they are not being interpreted very well.
More than 300 years ago, in a famous letter to the philosopher John Locke, the Irish thinker William Molyneux anticipated what May sees. A blind man who is suddenly given vision, Molyneux suggested, wouldn't be able to tell the difference between a cube and a sphere. Sight is one kind of perception and touch another; they can be linked only through experience.
The most dramatic proof of this theory came in an experiment published in 1963 by Richard Held and Alan Hein, who were then professors at Brandeis University in Waltham, Massachusetts. Held and Hein raised two kittens in total darkness. But every so often they would place the kittens in separate baskets, suspend the baskets from a single circular track, and turn on the lights. Both baskets hung just above the floor, but one had holes for the kitten's legs to poke through; the other did not. The free-limbed cat ran in circles on the floor, pulling the other basket along behind it; the other kitten had no choice but to sit and watch. While the active kitten learned to see normally, the passive kitten stayed effectively blind: Its eyes could see, but its brain never learned to interpret the sensory input.
Held and Hein's experiment has never been duplicated. But in the past half century studies of sight restoration, most notably by Oliver Sacks and Richard Gregory, have verified that some things can't be understood without experience. Objects, faces, depth--just about everything that helps us function in the world--are meaningless when a person who has never seen before gets sight. "Babies are born into a bright, buzzing confusion, but we can't ask them what it's like," Fine says. "In some ways talking to Mike May is like getting to talk to a seven-month-old."
Ione Fine and Don MacLeod use an interferometer to shine a split laser beam into May's eyes to test his ability to process visual information. They also run the same test on themselves. "I spend a lot of my time down here," Fine says, "with an eye patch on and a bite bar in my mouth. It's disgusting . . . really old plastic." In the first months after his surgery, May fulfilled Molyneux's prediction: he couldn't distinguish a sphere from a cube. Since then his sight has improved, but only slightly. He has a better grasp of spheres and squares ("We've shown him an awful lot of them," Fine says), and with practice he can understand things he's seen again and again. But this is only a work-around: He's past the critical period for learning to recognize objects instantly.
"Two of the major clues I have are color and context," May says. "When I see an orange thing on a basketball court, I assume it's round. But I may not be really seeing the roundness of it." Faces give him even more trouble. Although he has seen faces everywhere since the first day his vision was restored, they simply don't coalesce into recognizable people. Their expressions--their moods and personalities--elude him entirely. Even his wife is familiar to him only by the quality of her gait, the length of her hair, and the clothes she wears. "If a face has no hair and a fake moustache, we can still tell the gender," Fine says. "But he can't deal with it. The bit of the brain that does that isn't working."
The best proof of this can be seen in the basement, where MacLeod's interferometer sits. Designed to test the brain's ability to process visual information, the machine works by shining a split laser beam into a subject's eye. As the beams travel, their light waves interfere with each other, bypassing the optics of the cornea and projecting a pattern onto the retina. Most subjects who sit in front of the interferometer will see light and dark stripes, regardless of the quality of their optics. But when May opens his eyes to receive the beams, he sees nothing at all.
The interferometer results are backed by fMRI scans, which track May's brain activity as it's occurring. The scans show that when May sees faces and objects, the part of his brain that should be used to recognize them is inactive. But there's a catch. When he sees an object in motion, the motion-detection part of his brain lights up like a disco ball. He can interpret movement on a computer screen as well as any normal-sighted adult and seems to have the same skill in real life. "We were driving along, and a minivan came up to us pretty fast on his side," Fine remembers. "It whizzed by him, and he mentioned that it was going fast. That's a complicated calculation. The motion on the retina depends on how big the car is, how close, and how fast it's going."
It's hard to escape the conclusion that motion detection, unlike every other visual experience aside from color, is largely hardwired. The best illustration of this may be offered, once again, by cats. "If you roll a ball along a floor, the cat will chase it as long as it's moving," Fine says. "As soon as it's stationary, the cat will have a hard time seeing it and will ignore it." That's why mice freeze when they're afraid. It may also explain why May, who can barely recognize a stationary ball, is pretty good at catching a moving one. It's his favorite use of his new sense. "I don't know who has more fun," he says, "my eight-year-old or me."
When May walks down the street, he can't recognize perspective lines, so he uses visual landmarks to keep his bearings. "I'm learning one frame at a time," he says. Blind people spend their entire lives understanding the world through their hands. Their memories, their mental maps of the places they know, their understanding of Labradors, doorknobs, and the moguls on a ski slope are all tactile. The sudden introduction of a new sense can't alter that fundamental way of experiencing the universe. Instead, any new information gleaned from light is simply graphed onto the original, tactile map. "The old idea that there is one picture of the world on the surface of the cortex is way too simple," MacLeod says. "In fact, we have a couple dozen complete maps." For someone just learning how to merge all that information, this can make for a great deal of confusion. But it might also offer a richer, truer sense of the world than the one perceived by those of us who have never been blind.
Sitting in the lab one day, MacLeod, smirking like a schoolboy who's hatching a prank, slides a drawing across the table to May. On the paper are four cubes. The top right cube and the bottom left cube are dark; the other two are light. The drawing is shaded as if light were coming from above, so the tops of the squares are lighter than their fronts. This makes the top of the dark square the same shade as the front of the light square. Experience tells us that the top of the dark cube has been brightened by a hidden light, but it still seems darker than the front of a light cube. It's an illusion based on knowledge. Naturally, May doesn't fall for it.
"He's actually closer to reality," Fine says. "We once showed him two circles--a small one close to him and a larger one farther away. To you or me they would have appeared to be the same size. But when we asked, 'What's the apparent size?' he couldn't understand. He kept saying, `I know it's bigger because it's far away.'" Similarly, May's tactile experience with hallways and highways tells him that their sides are parallel, so he simply can't perceive converging lines of perspective. "A hallway doesn't look like it closes in at all," he says. "I see the lines on either side of the path, but I don't really think of them as coming closer in the distance." He pauses to mull this over. "Or maybe my mind doesn't believe what it is perceiving. When I see an object, it doesn't look different to me as I circle around it. I know orange cones around vehicles are cones because of context, not because I'm seeing the shape. If I picture looking down on a cone, it still looks like a cone."
Learning to see, for May, is really about learning to fall for the same illusions we all do, to call a certain mass of colors and lines his son, to call another group of them a ball.
One April morning, only weeks after his eye surgery, May took his skis and his family up to the Kirkwood Mountain Resort in the Sierra Nevadas--a place he knew like the texture on the back of his hand. This was where he had first learned to ski and where he had later met his wife. The sun was out, the trees were green (greener than he'd imagined), and the slopes were surrounded by gorgeous cliffs (were they miles away or just a few hundred yards?). As the lift churned above, skiers in puffy parkas flitted by, popping into his field of vision. His wife, acting as a guide, had to remind him to stop gawking and ski.
With only one working eye, May already lacked depth perception. But he also had little experience reading the shades and contours of a landscape. Heading down the mountain, he could hardly distinguish shadows from people, poles, or rocks. At first he tried to compute the lay of the land consciously: if a certain slope was being lit from the side and a shadow fell in such a way, then the slope must be convex. But once he hit his first bump, he was tempted to close his eyes and ski the way he knew and loved.
Only a handful of adults have ever seen the world through the eyes of a newborn, and many who did came away wishing they were still blind. Their family and friends had convinced them that vision would offer a miraculous new appreciation and understanding of the world. Instead, even the simplest actions--walking down stairs, crossing the street--became terrifyingly difficult. Dispirited and depressed, about a third of them reverted to the world of the blind, preferring dark rooms and walking with their eyes shut.
If May feels differently, it may be because his expectations were so low. For a man who used to enjoy windsurfing blind and alone, able more often than not to return to the pier from which he'd started, sight is just another adventure in a life of invigorating obstacles. Two years after his return to Kirkwood Mountain, May has learned to match what he sees on a ski slope with his repeated physical experience of it. "He has jury-rigged himself quite a functional little system," Fine says. "He knows that this kind of shadow makes this bump, this kind makes another." Instead of closing his eyes on even the easiest slopes, he can now negotiate moguls without a guide.
"People have this idea that it's so overwhelmingly practical to have sight," May says. "I say it's great from an entertainment point of view. I'm constantly looking for things that are unique to vision. Running and catching a ball is one of them--I've been chasing balls my whole life. Seeing the difference between the blue of my two sons' eyes is another. Or if you drop something, you can find it."
The gift of sight may seem most miraculous, in the end, to those who have never been blind. But May still finds things in the world to entrance him. Sitting in the passenger seat of Fine's car one day, with his dog, Josh, panting at his feet, he ignores the blue Pacific to the left, the towering, top-heavy eucalyptus trees lining the road like something out of Dr. Seuss. Instead, he gazes at the beam of sunlight filtering through the window onto his lap. "I can't believe the dust is just floating in the air like this," he says. Oceans and trees, Seussean or otherwise, he has known all his life through touch. But this glitter of dust, suspended in the bright La Jolla sun, is an entirely new awareness. He waves his hand through the sparkling beam. "It's like having little stars all around you."
Related Web sites:
Mike May kept a journal in which he recorded some of his thoughts and experiences:
<www.senderogroup.com/status.htm>.
The Discovery Channel created a documentary about May, including his first few moments of sight. Download a clip at Ione Fine's Web site:
<www-psy.ucsd.edu/~ifine/bandages_market.avi>.
[PHOTO/CAPTION: James Omvig]
Orientation Centers as Cutting-Edge Empowerment Stations
by James H. Omvig
From the Editor: The Rehabilitation Services Administration (RSA) is publishing a relatively short book which contains the distilled wisdom and experience of James Omvig about what constitutes constructive and successful rehabilitation for blind people. Jim, who is a lawyer by training, an adult adjustment center administrator by experience, and a Federation leader of many years' commitment, has poured all of his expertise and experience into this volume. RSA officials have assured those eagerly awaiting its publication that it will appear in November, so we are publishing the presentation summary of the text written by Jim Omvig as well as a brief review by an experienced educator of blind children. As I commented in my own brief review of this important text, "My only concern is that it [the book] is not uninteresting and abstruse, so students may refuse to take it seriously. It is, however, about as serious and important as any book can be that deals with the possibility of giving blind people back their lives and dignity." Here is what Jim Omvig has to say about this volume:
As America enters the twenty-first century, statistics show that between 70 and 80 percent of her working-age blind people are unemployed (Kirchner and Schmeidler, 1997). Of those who are employed, far too many are severely underemployed or are destined to be locked in at entry-level jobs for a lifetime. Why?
Putting to one side all of the rationalizations, there can be but two possible explanations for this dismal statistic: either, first, blind people as a class, no matter how thoroughly trained and adjusted to their blindness they may be, are inherently incompetent, or, second, there has been something inherently wrong with the blindness system in America--the complex of programs for educating or rehabilitating people who are blind.
The problem is not with the blind themselves. The evidence that properly trained blind people can live independent, successful, competitive, normal, and happy lives and can assume their rightful position of full membership in society is too overwhelming to conclude that the blind as a class are inherently incompetent. Therefore one must reluctantly and cautiously draw the conclusion that the problem has been with the blindness system itself--educational and Vocational Rehabilitation (VR) programs for people who are blind have historically not been what they could and should be.
Then, to compound the problem, the blind have been thought of by society--and have learned to think of themselves--as a group apart, a helpless and hopeless lot, as having neither the right nor the ability to work for their daily bread or to earn their self-respect. The blind as a group have thought of themselves not as unemployed but as inferiors who are unemployable: the reality is that the blind are a visible minority.
To round out the facts at the root of the unemployment problem, too many residential orientation and adjustment (O&A) centers also have unwittingly embraced society's negative view of the blind and have perpetuated these myths and misconceptions in the minds of their students, and those students have been the losers. Such centers have utilized what one might call the enabler model of service delivery. However, there is good news. The age of enlightenment is here, and a new model--a proven cutting-edge formula for success--exists. It is the empowerment model. Incidentally, the notion that only private centers, not those which are state-operated, can adopt and promote cutting-edge training practices and techniques is absurd on its face. All centers--both private and state-run--can and should embrace state-of-the-art practices and join what has been called "the revolution of personal empowerment."
The empowerment station model of an O&A center is one which recognizes that all offered services must be aimed at teaching its students a new and constructive set of attitudes about blindness based upon an understanding that prevailing views are wrong and harmful. Further, such a center will help its blind students strive to achieve four personal objectives (Omvig, in press). They are:
(1) The blind person must come emotionally, not just intellectually, to know that he or she truly can be independent and self-sufficient;
(2) The blind person must really learn and become competent in those skills--the alternative techniques of blindness--which will make it possible for him or her truly to be independent and self-sufficient;
(3) The blind person must learn to cope on a daily basis with the public attitudes about blindness--with those things which will be said or done to him or her because of other people's misunderstandings and misconceptions; and
(4) Even when the blind individual has adjusted emotionally to blindness, even when the alternative techniques have been mastered, and even when he or she has learned to cope effectively with the demeaning things other people do or say, the blind person must also learn to blend in and to be acceptable to others. He or she must be punctual, reliable, neat and appropriate in appearance, and possessed of good social and table manners and the like. Since the ordinary blind person needs to learn to blend in and to be acceptable to society for maximum success, the schools and agencies must do the very best they can to make sure that this desired result is achieved.
Freedom should be accessible to everyone! It is possible, with a willingness to think outside the box, for the traditional O&A center to become an exciting empowerment station and to move those students who choose to attend it toward successful, high-quality employment and increasing integration into society. A proven cutting-edge formula for success exists, and it is available for the taking. A brief summary of these training center best practices is as follows:
* Emotional Adjustment: Helping the student come to understand and feel at the gut level, not just intellectually, that true freedom, independence, and normality are possible for him or her is the most difficult and time-consuming part of the entire adjustment-to-blindness process. It is achieved at the empowerment station over a six-to-nine-month period by seeing to it that the student is helped to accept the fact that he or she is blind and to learn that the word "blind" is okay; by meeting difficult challenges; by using sleepshades for the partially blind; by facing routine life experiences; by using the long white cane constantly; by engaging in frank discussions about blindness; by being exposed to good blind role models; by learning the importance of paying back; and by being willing to invest the time it takes to get it.
* Mastering the Skills: The empowerment station will not merely introduce students to the skills of blindness but help them strive to master those skills in order to achieve competence and competitiveness. The student (using sleepshades for those who are partially blind) must master Braille reading and writing; hone long white cane use to reflex perfection; develop effective keyboard and computer skills; and acquire usable homemaking and personal grooming habits. In addition the student must learn how to think up alternative techniques for the rest of his or her life in situations where center training could not foresee the need. Finally, the student must be able to master life-coping skills and be able to respond effectively to the ubiquitous how.
* Coping with Blindness: As a routine part of empowerment training, the student must learn to handle unemotionally the strange and unusual things other people will do or say because of their misunderstandings and lack of accurate information about blindness. The student should learn to handle routine put-downs; treatment which goes beyond the bounds; and discrimination.
* Blending In: As a final routine part of training, the empowerment station will help the student achieve what it takes to be able to blend in and to be acceptable to those around him or her. The student will master such things as punctuality and reliability; common courtesy; personal appearance, and what things look like; learn that the blind are judged by one another; and work to eradicate blindisms.
A quality O&A center is the heart of any good VR program. In Chapter XIII of Freedom for the Blind, I outline twenty individual characteristics the quality center should have. The student who has received personal empowerment from a cutting-edge residential O&A center has a markedly higher chance for vocational success than the norm. Given the right kind of training, the average blind person--not merely those some observers mistakenly perceive as the superblind--can compete on terms of true equality with his or her sighted peers and can become a taxpayer rather than a tax user. Far from wanting meekly to whimper, "I wonder what it would feel like to be free," the empowered blind person can climb the highest mountain and shout, "I am free! I know what it feels like to be free."
Kirchner, C. and Schmeidler, E. (1997). Prevalence and employment of people in the United States who are blind or visually impaired. Journal of Visual Impairment and Blindness, 91 (5), 508-509.
Omvig, J. (in press). Freedom for the Blind: The Secret is Empowerment. Hot Springs, Arkansas. Regional Rehabilitation Continuing Education Program, University of Arkansas.
Freedom for the Blind
A Review
by Alan Myklebust
From the Editor: Alan Myklebust has worked at the Arizona School for the Blind for over twenty-five years as a teacher, technology specialist, coach, and administrator. We are very pleased to publish his review of this important book:
James Omvig has written an important work about blindness, Freedom for the Blind, which should be read by everyone in the blindness system, from service providers to administrators, from educators to rehabilitators, and blind individuals themselves. In simple, passionate, no-nonsense language, Mr. Omvig explains the truth about blindness. Omvig knows the truth. He has lived it. He has been in, out, around, and through the blindness system throughout his life. He has experienced firsthand the good, the bad, and the ugly of what society and programs for the blind have done to and for blind people. He was taught by great masters and has become one himself.
This work is a declaration of independence for blind people and a challenge to the blindness system to empower blind constituents, create positive attitudes about blindness, and "think and dream and teach out of the box." Omvig does not just deplore the abysmal statistics about the employment of blind people; he offers a formula to correct this egregious situation. He takes on the myths, misunderstandings, and misconceptions about blindness and artfully debunks them all one by one. Omvig takes on the flawed and failed methodologies of the blindness system and exposes them all for what they are. However, Omvig doesn't just point out the fallacies in the system. He offers specific techniques and outlines an entire program for the successful adjustment to blindness for both children and adults. He describes a philosophy and practice to achieve mental, emotional, physical, and psychological freedom for blind people.
Some in the blindness system will take exception to all or part of this message. Omvig has not written this monograph to please the establishment. Sometimes the truth hurts, and he does not mince his words. He takes the system to task for its inherent failures and chastises those who perpetuate learned dependency and helplessness, including some blind people themselves. In many quarters of the blindness system this work will be dismissed for its unpopular stance toward the status quo. It will also be criticized for its lack of research-based support and for some of the specific training techniques Omvig espouses.
However, as Omvig articulately points out, the truth about blindness is deceptively simple, and the concepts which lead to increased personal independence, authentic informed choice, and true empowerment for blind people are logical, proven, and uncomplicated. The alternative techniques of blindness are well known and reliable. The road to independence and freedom has been traveled by many successful blind people over the years and continues to be traveled today. What concerns the author, and should concern the reader and every person connected to the present-day blindness system, is that statistics show that fewer blind people are living independent, productive, self-fulfilled lives than should be the case.
Omvig explores the reasons why the system has failed its clients so miserably. He explains what blindness really is and how, through proper training, stereotypic thinking and attitudes about blindness can be overcome. He describes the stages on the road to independence and the empowerment motive which service-providers must exemplify. Throughout the book Omvig turns the tables on the blindness system and the sighted community, making the tired clichés so often cited for retaining the same old stereotypic attitudes toward blindness seem ridiculous and absurd.
Those of us who know Omvig can hear his strong, unwavering, passionate voice speaking these words directly to us in a conversation or a lecture or a lesson. His recollections and experiences enrich his presentation and illustrate his message. Life has taught him well. Now he seeks to share the freedom he has achieved with every blind person in America. "Freedom, once tasted, is irresistible, and it can fuel the passion and give birth and hope to the dream." The dream has been very well articulated in Freedom for the Blind. He believes that the age of enlightenment in working with the blind is at hand. Let us hope and pray that he is right. In Freedom for the Blind Omvig has made a noteworthy contribution to the cause.
Editor's Note: As we were going to press, we learned that the Regional Continuing Educational Program (RCEP) for RSA Region 6, located at the University of Arkansas, has published Jim Omvig's book. It is also now available on the RCEP Web site. The address is <www.rcep6.org>. Just follow the links.
[PHOTO/CAPTION: The Kuell family: (left to right) Nick; Mom, Christine DiMeglio; Grace; and Dad, Chris Kuell]
Just Their Dad
by Chris Kuell
From the Editor: Chris Kuell is second vice president of the NFB of Connecticut. He also chairs the state's Braille Literacy Advisory Council. As is evident in the following story, he is making a remarkable adjustment to blindness and doing a great job with his kids as well. Now meet the Kuell family:
I received a great report from my daughter's kindergarten teacher this morning. Not that it was a surprise, but good to hear nonetheless. The teacher came over to me, as Grace was busy putting away her coat and backpack in her cubby, and said, "Grace is such a great kid. Her reading skills have just skyrocketed in the last month. She is really getting it. And all the kids love her. I'll be sad when she moves on to first grade."
Beaming with pride, I thanked her, made some small talk, and hugged Grace before walking my son to his third-grade class. There I was greeted by a rousing "Hello Mr. Kuell!" from his teacher. "Did Nick tell you he was the multiplication king?"
I informed her that indeed he had. Then I gave him a hug and was on my way. Heading down the long hallway towards the door, I heard a small voice to my side say, "What's that?"
Hearing no other response, I assumed the kid was talking to me. "This thing?" I responded. "This is my cane."
"What's it for?" asked the inquisitive voice.
Knowing I had only a minute before reaching the exit, I gave the simple answer: "My eyes don't work. I use the cane to feel where I am going."
"You can't see anything?" came the astonished response.
"Nope, nothing," I answered.
"Oh," said the child. A few steps later the kid gave me a cheery "Bye." I bid him good-bye and then headed out of the school into the fresh air.
When I lost my sight four years ago, I never could have envisioned such a pleasant drop-off. Amid the anxiety of losing my sight, my job, and my career, I felt helpless in raising my children. When my daughter was born, I was blind in one eye, but the other could see what a beauty she was. By Christmas that year everything was a blur for me; I couldn't really make out which gifts were which. For the first time I couldn't see the joy on my kids' faces as they opened their loot. My vision was really going downhill.
I needed surgery on my good eye a few months later, and, while I was hopeful, there was still lingering doubt. On the day before the operation I tried to hold my daughter still. I got about four inches from her face to try to see her as best I could. Being a kid, she thought I was playing, so she squirmed and rolled, and I never did get a good look at her. My son had just turned five at the time, and he was a little more cooperative. That was the last time I ever perceived my children visually.
So how does one move from this heart-wrenching melodrama to the nice morning I had today? How can a blind parent help to educate his children and give a positive impression to others? It is not particularly hard. The answer is through persistence, creativity, and a positive attitude.
You have to believe you can do it. This is fairly logical-–thousands of other people do it every day. You have to work at the essential blindness skills. They are necessary to do what you want to in life. Besides, mastering them will build your confidence for tackling new stuff. And you have to be creative. Unless you have a blind friend at your side twenty-four/seven, you will have to figure stuff out on your own. Remember, necessity is the mother of invention.
My wife and I both worked with our son to teach him the alphabet and basic phonics, and at age four he was beginning to read simple things. Now he excels at all his schoolwork, which we attribute to his early reading. So when Grace turned three, I tried to figure out a way that we could give her the same head start. I took some old business cards (I was now unemployed and didn't really need them anymore) and wrote a letter in bold marker on the back of each card. I used my slate and stylus to make the letter in Braille, so in effect I made blind-friendly flash cards. We used to play games in which she would memorize the letters. After she mastered the upper-case letters, we did the lower-case ones and started working on sounds. This took a while longer, but soon she caught on.
A year or so ago I started making word cards, emphasizing families of sounds. For example, at, cat, bat, rat, and sat are the at family. We would also work on the basic, much-encountered words like the, and, I, you, etc. A lot of these she just memorized, but in time she developed a good sight vocabulary. My wife and son would read with her often, and together we listened to books on tape. As her teacher said, in the last month everything is really starting to click, and she is reading.
I taught my son and daughter basic addition and subtraction at the kitchen table and in the bathtub. I started by having them learn to count fingers and toes, crackers, whatever. Then in the kitchen I'd give them a few grapes, have them count them, then give them some more and count again. This quickly evolved into an addition game. After that came subtraction. If I gave them twelve cheese doodles and they had eaten eight, how many were left? This stuff was reinforced during bath time, when I quizzed them with problems, and they tried to answer both correctly and quickly.
My son is very good at doing math in his head, while Grace still relies on her fingers a lot. But that is okay; she understands the concept and can do problems more and more without manipulatives. By a combination of a lot of innate intelligence and bathtub grilling, Nicholas has memorized the multiplication table and now reigns king of the third grade.
Finding games to play with kids takes a bit of imagination and a lot of patience. Playing with cars and trucks, setting up blocks and bowling them over with a tennis ball just came naturally for me. Doing arts and crafts is a little trickier, but I have a sighted memory of most things, so with a pad of colored construction paper, scissors, and white glue we can create just about anything. Both of my kids and I love playing cards, which is possible using Braille playing cards. I don't know too many card games, and I soon became weary of Go Fish. So at a very young age my kids learned how to play poker, which provided a natural opportunity to work on their math skills once again.
The possibilities for learning and having fun with kids as a blind or visually impaired adult are limited only by your desire and imagination. My kids are well adjusted, smart, and overall great people. They bring me a great deal of pride and have helped me in many ways to become a better person. I honestly believe I would not have come as far as I have if not for the challenge of being a good dad to Nick and Grace. To them I'm not a blind guy or the man with the long white stick; I'm just their dad, and a very lucky one at that.
[PHOTO/CAPTION: Mike Bullis]
Open Letter to a Blind Person:
Choices That Can Change Your Life
by Michael Bullis
From the Editor: Mike Bullis is a longtime Federationist who has recently moved from Oregon to Maryland. He has toiled in the rehabilitation vineyard as well as owning his own businesses. Recently he underwent the rigorous testing necessary to earn National Orientation and Mobility Certification (NOMC) from the National Blindness Professional Certification Board. This is the first in a series of open letters that Mike has decided to write. It is filled with common sense and straight talk. Here it is:
Dear Friend:
This is a letter intended to help certain blind people—perhaps you—think through the many decisions you will have to make about training, education, and skills. Even though you may have some usable vision and describe yourself as visually impaired, for ease of writing and as a practical matter, I will refer to you as blind.
Thanks to federal rehabilitation law, many free services are available to you at your local state rehabilitation agency, including lessons in Braille, cane travel, and many other skills. If you are to make informed choices about those services, you have much to learn. The decisions you make about the training you do or do not get--and what type you choose--will affect everything: your ability to work, your marriage and relationships with friends, your personal beliefs about yourself, and indeed whether you view life as a wonderful opportunity or a frustrating and not very fulfilling prison sentence. The information in this letter has helped me and thousands of blind people move from dependence to freedom. It's not simply my thinking but represents the wisdom of thousands of successful blind people throughout the nation.
What I'm about to say is very blunt talk. Before I say it, let me give you a way out. That is, I'd like you to know that none of it necessarily applies to you. The nice thing about life is that there are exceptions to every rule. As important as an education is in today's world, some people do very well without going to high school or college. As important as it is to research a business thoroughly before starting it, some people start without research and become highly successful. And similarly, as important as it is for blind people to be trained in skills such as Braille and cane travel, some blind people have been successful in life without mastering them.
Having said that, if you think that something in this letter doesn't apply to you, it may not. My only advice to you, as someone who has broken a lot of rules in life, is that every time you break a rule that most people have found helpful, you increase your chance of failure. So be very honest with yourself about whether your rule breaking is a dishonest desire to avoid hard work, an avoidance of a truth you refuse to face, or truly necessary for you in your circumstances and with your personality.
I have both good news and bad news about blindness. The good news is that, if a blind person concentrates on learning the skills of blindness for from nine months to a year, he or she will in all likelihood become a competent, functioning blind person. For that person issues of blindness will be secondary for the rest of his or her life. Reading at 200 words per minute, just as most literate sighted people read; typing at 80 to 100 words per minute; entering a room with confidence; walking wherever you please and doing it when you please; throwing a burger on the barbecue with the same ease as your neighbor: all of this is possible.
Life for the person who takes this time and concentrates on really becoming a master of the skills of blindness will be, for the most part, full of the ordinary cares of the world like dating, getting married, raising kids, paying the bills, or complaining about the boss. Blindness will be, for the most part, on the back burner. No, you won't be able to see, but the alternative skills you have learned will reduce that truth to a minor fact of your life.
The bad news in our good news/bad news scenario is that most blind people never do what I have described. Most of us who need skills try to avoid taking the concentrated time and effort to get them. They learn a little Braille--thirty words a minute--and maybe not even that. They are, for all practical purposes, functionally illiterate. They don't think of it this way, but, if they were sighted, that's the way it would be described. They get some basic cane travel. No, they can't go to new places comfortably. They walk slowly and cautiously. They avoid really busy streets. When moving to a new neighborhood, they often call up an agency serving blind people to be oriented. The thought of travel to a new city is frightening and often complex, to say the least. And, what's perhaps worse, or at least saddest, is that the joy of a simple walk doesn't exist for them. Feeling the breeze, the warmth of a sunny day while walking through the park and not concentrating on one's cane technique, but just getting out for the joy of it, is lost to this person. Cane travel is not automatic; it's a chore.
This person is a mediocre cook. He or she has no thought of flipping a burger and answering the phone the way normal people do. Cooking is a concentrated effort. It means microwave foods, not by choice but by necessity--no backyard barbecues, no neighborhood picnics where the blind person contributes as an equal, no simple filling of a glass or cup.
Such people pay other, cultural prices of second class social status. I do not mean that they face discrimination as a legal matter and should sue somebody. That may or may not be true and needs to be evaluated on its own merit. I refer to the second-class social status that such folks bring upon themselves because of ineptness. Because they cannot walk with ease, look people in the eye, carry themselves like others do, use hand gestures, and engage in the normal give-and-take of social interchange, they are treated differently. They don't take their son for a relaxing walk or run to the local Starbucks to buy coffee for the office. They are different, not because they are blind, but because they cannot compete in society on terms of equality when and where it counts. They don't get hired and don't know why. They don't have dates and think it's because they're blind, not realizing that many blind people date normally.
These people often end up in marriages based on caretaking rather than equity. They often have jobs that are carefully defined while the rest of their coworkers do work that requires flexibility. When something is needed from the other room, colleagues are quick to get it for them because the blind person doesn't put people at ease when he or she travels. Nobody ever looks to them to take charge of a situation. When they enter a room, people stare out of curiosity as they tend to do with blind people. But ill-adjusted blind people cannot help those staring people relax. They can only leave the people uncomfortable and wondering if they should help in some way. Their neighbors may help them read the mail, but they never know the pleasure of helping their neighbors with a household or yard project.
Yes, that is both the good news and the bad news about blindness. You can either get the skills and get it over with, or you can continue to struggle and be frustrated--blaming it on blindness instead of yourself and the choices you have made. You can either take that year and once and for all put blindness on the back burner, or you can continue to be frustrated year after year.
Many people object to taking a whole year of their life to learn these skills. They say, "I can't take a year off; I have kids to raise," not realizing that their children need a dad or mom who can confidently parent them, not a dad or mom who needs taking care of. They say, "I need to get back to work," not realizing that without the skills of blindness they will most likely not receive promotions that others get, and they will find changing jobs a constant frustration. They will be heard to say, "I wish people at work treated me as if I were normal," not realizing that they don't look or act normal and don't really pull their own weight on the job-–doing everything everyone else does in a natural and relaxed manner.
They say, "I'm not comfortable around sighted people," not realizing that this equation has two sides. Part of it is that, w