Corinne Kirchner, Ph.D.
by Corinne Kirchner, Ph.D.
From the Editor: The following article is reprinted with permission from the April, 2000, issue of the Journal of Visual Impairment and Blindness, Volume 94, Number 4, 2000, pp. 243-246, Copyright 2000 American Foundation for the Blind. All rights reserved. JVIB readers can find many interesting and sometimes astonishing things in its pages, but humor is not high on the list of the expected. Corinne Kirchner is Director of Program Evaluation and Policy Research for the American Foundation for the Blind. She is to be commended for this insightful compilation of information about our field.
For decades a little-known research project has been underway at the American Foundation for the Blind (AFB) to collect the most outrageous and humorous typographical errors related to visual impairment. The effort has resulted in a bursting folder of source materials filed in the author's office. Although an important source of the data has been articles submitted to the Journal of Visual Impairment & Blindness (JVIB), especially those not published, there have been other unexpectedly fruitful sources: grant proposals, books, speeches, newspapers, inquiries received by telephone, and envelopes.
A major concern in compiling demographic statistics on blindness is how best to identify which parts of the population merit attention. A letter sent to AFB a few years ago highlighted a special population that has been overlooked by services; the envelope was addressed to the American Foundation for the Bland (emphasis added here and throughout this report). National surveys do not measure the prevalence of blandness. Therefore it is not possible to estimate how many people in the United States are totally bland or severely bland, much less how many meet the criteria of legal blandness.
Another needy population was targeted by an AFB researcher (former AFB researcher) while she was leading a focus group. She had apparently made one too many references to the sample that included blind and sighted people and therefore blurted that AFB was studying "blighted people." The blighted and the bland should be added to the traditional groups covered in the first edition of a book by the author, which referred to services needed by the undeserved.
Another relevant group that is hard to pin down for statistical purposes was featured in a chapter on vocational issues. The title, as repeated on every page, identified that elusive group as "the Blind and Usually Impaired."
After researchers or policymakers specify the population of concern, there remains the challenge of how to assess which people fit the population definition. One article submitted to (and rejected by) JVIB made the following hard-to-assail proposal: "The system should allow for the assessment of visual levels of functioning for people with visual vision."
Causes and Type of Onset
AFB usually refers questions about causes of blindness to organizations that specialize in medical matters. However, it seemed that a religious organization might be more appropriate to answer the consumer who inquired, "How many people are blind from immaculate degeneration?" At least it was clear that the questioner could not be referred to the Virginia Department for the Visually Handicapped, which (as reported by a former staff member in that agency) once received a letter addressed to the "Department of the Virginally Handicapped."
It may be a revelation to epidemiologists that blindness is not only geographically linked, but may actually be geographically caused. The evidence comes from a listserv on which a new member introduced himself as "thirty-nine years old and blind since birth from Pittsburgh, Pennsylvania."
Closer to AFB's expertise on social aspects of blindness are questions about types of onset; nevertheless, AFB was unable to provide statistics matching the category listed in one paper submitted to JVIB that referred to people who are "congenially blind." That group contrasted with another submission that referred to people who are "advantageously blind." Of course practitioners work toward the day when all blind people will be both congenially and advantageously blind.
In line with these positive cultural depictions of blindness, a newspaper clipping referred to celebrating "Helen Keller Dear-Blind Awareness Week."
Apparently multiple impairment is also cherished by the community. The sharp increase in age-related causes of blindness was recognized with particular sensitivity to problems of elderly persons in an invitation for this author to speak to an audience of practitioners. The letter explained, "We are interested in . . . the groaning population of older adults becoming blind or visually impaired."
Problems of Low Incidence
The sources for this project include ingenious solutions to the persistent problem of finding sufficient numbers of blind people for research projects. One forward-looking solution was suggested by an envelope addressed to the American Fund of the Blind. Unfortunately, the issue remains how to stock the fund.
There are some rather drastic approaches. For example, a grant proposal for doctoral research (whose written report must be presented as a bound volume) included a budget item of $200 for "typing and blinding."
Another researcher proudly credited her own work with creating its study population. She wrote, "We can look forward to obtaining very useful data on children who are blind or visually impaired from this study." (Full disclosure: That source material came from this very author.)
Another timely and horrific idea for assuring a sizable blind population was inadvertently proposed by a respected leader in vocational rehabilitation, referring to employment possibilities in data collection for the 2000 U.S.
Not all such ideas yield solutions to the need for more research subjects. There are other examples that, although equally shocking, would have the opposite effect. For example, at an advocacy meeting a representative signed in on behalf of "the Death Blind Coalition." And in one state that shall remain anonymous there is a "State School for the Dead and the Blind"--that is, according to an appropriately now-defunct mailing list at AFB.
By contrast, it is amazing to learn that much of the blind population might not only be assisted but actually cured by modern information technology. That possibility is revealed in a newspaper that reported a blind Internet user's "sight on the Web"--a remarkable phenomenon.
An inspiring note for increasing the supply of research subjects was sounded in a draft of an AFB policy paper. The paper implies that many more people could achieve visual impairment with the right motivation. It refers to "programs that serve only those who are determined to be legally blind." You too can become legally blind, if you are really determined.
A totally different approach that could be adapted for recruiting volunteers as research subjects is to ignore visual status and simply require court-approved evidence of personhood. That approach was used by a nonprofit organization "looking for two legally people interested in serving on the board."
Who Does What to Whom?
Up to this point this report has focused on the recipients of services. Now it will turn its attention to types of specialized services and the practitioners who provide those services.
Definitely the most exalted specialized service we have encountered is "Leader Gods for the Blind." It seems there is no training program for these rare specialists; they just miraculously appear. It is a sharp drop from the sublime to the ridiculous in a study report on orientation and mobility (O&M) services that dealt at length with training in use of the long can.
As everyone familiar with the politics of detectable warnings can appreciate, that realm of services is a battlefield of opinions. Thus it is not surprising that one grant proposal described its plan to study detestable warnings, and another project was titled "Tactical Warnings in Curb Ramps."
Now this report shifts from established service specialties like O&M to an emerging one. A grant proposal recently stated that there is a serious need throughout the country to help blind and visually impaired people acquire "assertive technology."
One obstacle to providing needed services is the critical shortage of specially trained personnel. It is with mixed emotions, therefore, that the author reports on the attempt at recruitment of graduate students posted on the Internet by a respected university. To quote: "Enhance your career by becoming dully certified in the field of vision impairment with the addition of an O&M therapy certification." Of course acquiring both certifications is probably less dull than either one alone.
As a closing note there is poetic justice in realizing that people who might choose to become dully certified will be ideally trained to serve the population mentioned at the outset--whose most severe impairment is blandness.