The Braille Monitor October, 2003
The Truth about Choice
by Fredric K. Schroeder, Ph.D.
Dr. Fredric Schroeder
From the Editor: Last spring, long before Resolution 2003-101 on rehabilitation choice caused great discussion at our convention, I asked former commissioner of the Rehabilitation Services Administration, Dr. Fred Schroeder, to write an article for the Braille Monitor discussing his understanding of what the concept of informed choice as laid out in the Rehabilitation Act means. After all, when the choice language was written into the act, Dr. Schroeder was RSA commissioner. Who better was there to articulate what was meant and what was not. This is the article he wrote:
Perhaps no more misunderstood provision of the Rehabilitation Act exists than the requirement that individuals receiving rehabilitation have the opportunity to exercise "informed choice" in all stages of the rehabilitation process. While many issues have arisen surrounding the real meaning of the language that makes choice a fundamental value of the rehabilitation process, the most hotly debated question in the blindness field today is the proper application of informed choice in the selection of and participation in orientation-and-adjustment-center training.
The definition of effective orientation and adjustment training for blind people has been a topic on which people in the blindness field firmly disagreed long before the informed-choice provisions were enacted into federal law. In the mid 1980's the National Federation of the Blind began establishing orientation and adjustment centers modeled on the program Dr. Jernigan had created in Iowa years earlier.
The Federationists who established these programs did so because they believed the existing orientation and adjustment programs in the country did not offer training that challenges blind people to come to terms with their blindness, nor did the training encourage blind people to develop fully the skills necessary to live and work productively. In short, these Federationists assessed the existing training commonly available and came to the conclusion that it was rooted in low expectations mirroring society's stereotypic view of blindness--producing training that moved people from dependency to lesser dependency with no real goal, no real belief in the attainability of a normal, productive life. In other words, existing training pretended the training model based on lowered expectation was a virtue called respect for the individual. Federationists came to reject both the model and the training based on it, and founding centers of their own was the logical next step.
The essence of the NFB model is its assumption that blind people are capable of full participation in society. Of course all programs maintain that their training is based on the same assumption, but those who have attended training at one of the NFB centers know that, while all programs say they believe in blind people, at NFB centers that claim is supported by actions.
So what are these actions that make such a difference? First, in NFB centers skills training is not viewed as separate or apart from confidence building. Blind people are helped to believe in themselves and acquire the necessary skills to put their newfound confidence into practice. The fundamental connection between skills training and confidence training is explained and emphasized, both in words and in the students' progress through the center, during which they are taught and drilled on all basic blindness skills while simultaneously being taught the confidence to problem-solve throughout life. This combination of skills and confidence, of first learning and then practicing to routine mastery gives students a firm foundation on which to stand throughout all life's challenges.
Participants in NFB centers are referred to as students, not clients. The distinction between student and client is followed systematically throughout Federation training center practice. Being a student is an active task. Students take responsibility for their own learning and progress. Being a client on the other hand means that the person waits more or less passively for something to be done to him or her. Next, students take the full range of courses which, taken together, are designed by training center staff to complete both skills and confidence training to routine mastery. On the other hand, clients at more conventional centers, new to blindness or to grappling effectively with it, are nonetheless encouraged, in a mockery of the real meaning of choice, to pick and choose from available classes--even, or especially, those of which the client is most afraid, leading to the absurd result that the client who understandably knows little about blindness is made to feel empowered, while he or she is declining to learn the fundamentals needed for true empowerment.
Moreover, students are viewed as blind people regardless of whether they have some remaining vision, in contrast to the client model which allows clients to reject this training method without really even knowing what they are rejecting. Accordingly, students with some sight wear sleepshades all day--five days a week--in all classes and during after-hour activities. Why? First, because sustained use of the blindfold allows students to achieve routine mastery of the essential nonvisual skills that they will need to function safely and effectively after training. Second and equally important, because it is the most effective way to help students reshape their beliefs about blindness.
Third and as important as the other two is the profound belief at NFB centers that students must learn to see themselves as part of the community of blind people--part of the struggle of blind people to achieve true equality and full integration into society. NFB centers teach their students that students must not simply take but give back as well, that they have an obligation to pass on what they have been given and to be a part of the movement of blind people toward true integration. They become a part of the National Federation of the Blind--the family of blind people, giving and receiving support, giving and receiving encouragement, giving and receiving hope for the future.
There are other differences between NFB centers and the more conventionally designed ones--use of rigid canes that are longer than customary in conventional programs, for example; but the fundamental difference is one of expectations--believing in blind people and helping them to believe in themselves.
So where does informed choice come in? It may seem obvious that blind people can choose to attend an NFB center or they can attend more conventional programs. After all, the concept of informed choice is based on the assumption that an individual has options from which to choose. Nevertheless, some agencies and individuals subscribe to a misguided, even corrupted concept of informed choice which they have then used like a club to try to force NFB centers to operate like conventional centers. These misguided proponents of choice argue that the law forces NFB centers to be just like other centers in allowing participants to choose for themselves which classes to take, whether to wear sleepshades, and which type or length of cane to use. These misguided proponents claim to be upholders of the law and seek to enforce their opinion upon NFB centers despite the fact that such practices are incompatible with the underlying NFB-center philosophy and despite the fact that, rather than showing respect for the individual, such practices are widely recognized by blind people to be ineffective and, all too often, harmful.
Perhaps the most absurd application of this misguided version of informed choice came to my attention when I was commissioner of the Rehabilitation Services Administration. An NFB center was routinely accepting students from a state rehabilitation agency under a contract with that agency that allowed agency clients to choose the NFB center and thereby save the rehabilitation agency the trouble of doing the same paperwork over again for every new student attending that center. The rehabilitation agency told the center that, as a requirement for continuing its contract with the NFB center, the center was not to assign students canes.
Instead, according to this misguided version of choice, the NFB center was simply to show new students a selection of all available canes and allow the student to select a cane of any type and length without comment from the instructor--as though professional judgment and expertise had somehow been repealed in the name of choice. In other words, the rehabilitation agency was so drenched in the choice language that it was willing to break a contract with a training center offering a genuine alternative to its clients because of what it perceived as a lack of choice when in fact the fundamental choice was between approaches to training and not between specific canes to be used by a newly blind person.
Once, while I was attending a blindness-related meeting in Washington with Dr. Maurer, another misguided proponent of informed choice floated the idea that people attending NFB centers should not be required to participate in NFB activities. This person maintained that orientation and adjustment training should be neutral and went on to make it plain that, in his view, neutral meant neutral in the sense of not promoting any particular philosophy, by which he obviously meant the NFB's approach to blindness. Dr. Maurer quite reasonably asked the person why someone who disagreed with NFB philosophy would want to attend an NFB center. The person replied that it was well known that the NFB centers offer the best training in the country. Dr. Maurer pointed out that participation in NFB activities is a key part of the training, not an add-on or extraneous activity.
The suggestion that our centers be philosophy-neutral would be like demanding, in the name of choice, that parochial schools not insist on providing religious instruction because it might be offensive to some students. If NFB centers are forced to give up the characteristics that distinguish them from other programs, blind people will again be limited to one homogeneous model of rehabilitation training, the training Federation centers seek to replace, forbidding the very training the misguided proponent himself admitted was the most effective.
During my term as commissioner I made it clear when I issued policies and provided technical guidance to rehabilitation agencies that informed choice must be practiced at the program level or, in other words, at the time an overall program is chosen. For informed choice to be real and effective, blind people must really have the right to learn about available options and differences among programs and then to exercise their right of informed choice in selecting a training program. However, it is not reasonable to ask and is most certainly not required by law to force a program to change its fundamental nature in the name of informed choice.
Consider this analogy: a person wishing to pursue a professional career may find that it is necessary to obtain a college degree. The individual may, after reviewing the curriculum, make a choice among the various options and attend a particular college or university, exercising the right to choose among such differences as more or fewer required classes; more or fewer requirements outside the major field; presence or absence of foreign language, math, or science requirements; and presence or absence of strict rules about alcohol on campus. But, once the choice of college is made, the student cannot then insist on being exempted from an otherwise required class simply because he or she does not believe that it will have relevance in his or her professional life.
Similarly, a student cannot simply decide that he or she would prefer a different textbook from the one the instructor has selected or simply decide not to attend class without suffering consequences from such decisions. Once the choice has been made to attend a particular college or university, the student is bound by the requirements of that institution and the decisions of its faculty. The student's choice is to attend or not to attend. By simply making that choice, the student is not then endowed with the power to dictate that the program change its curriculum, teaching methods, or for that matter its philosophy at the whim of that one student.
Similarly training programs providing orientation and adjustment for blind people also have differences. Some orientation and adjustment centers permit their participants to choose which classes they will take and whether they will wear sleepshades for all classes, some classes, or not at all. Some programs allow participants to choose how long they will attend. But other programs--those at NFB training centers and those modeled on our centers--believe in a much more structured approach to training. Individuals have the right to exercise informed choice in deciding which type of program they wish to attend, but they do not by reason of having chosen a particular program then have the right to demand that the program alter its structure or programming for them.
That is the law. That is the technical answer--blind people can choose to attend an NFB center, or they can choose to go somewhere else.
Yet in a real sense the legal or technical content of informed choice sidesteps the most important question. To say simply that people can make a choice leaves the impression that both options are equally good, that they are equal in quality, that both are effective in assisting blind people to gain the confidence and skills to live normal, productive lives. Treating informed choice as a neutral concept suggests that the choice is one of style, not quality--like choosing between chocolate and vanilla ice cream or choosing whether to vacation in Boston or Yellowstone--a choice based on preference and individual interests. The truth is that the differences are not gratuitous or unimportant, not simply a matter of style, not the casual choice between ordering a steak and a piece of fish for dinner.
When a blind person seeks training from a rehabilitation program, that training is likely to be the person's single formal opportunity to acquire the skills he or she will need to live productively. If the blind person receives training rooted in the stereotypic belief that blind people are inevitably limited to lives of marginal participation, he or she is likely to internalize such beliefs. On the other hand, if the training is rooted in the belief that blind people can learn to take charge of their own lives and can master the skills to work competitively, then blind students are much more likely to develop confidence and pursue personal goals and interests. To hold high aspirations, blind people must believe that they have at least a reasonable chance of attaining those aspirations. To have hope, blind people must believe that they have the possibility of living a normal life.
The misguided idea that blindness should be viewed as nothing more than a sort of clinical challenge--a condition requiring skills taught by professionals who will always know more than the blind person can ever learn, skills which can help the blind person function a little better but which can never allow him or her to compete on terms of equality with the sighted, and with no expectation of true normalcy, true equality, or true fulfillment, dignity, and self-respect. The prevalence of such a view is a sorry commentary on the failure of the blindness field to understand the social dimension of blindness and its impact on blind people and society as a whole.
We have been told in the form of a criticism that NFB training centers are a one-size-fits-all approach to training. In one sense, this is true, but not in the way that the general public assumes that all blind people are the same, regardless of age, education, health, or ability. NFB center staffs recognize that, to be successful, all blind people must come to understand that they are blind, that blindness means they will face discrimination, that blind people themselves are often one source of that discrimination in the form of lowered personal expectations, that to combat discrimination from within or without they need a broader perspective on blindness coupled with confidence and skills, and that the best way to gain perspective, confidence, and skills is through a concentrated training program and ongoing involvement in the National Federation of the Blind.
What is the alternative to this so-called one-size-fits-all model? It is what we have always had--the conventional training system based on low expectations. When people become blind, they do not know what they need, what is possible, or even what training will best serve them. So to use choice as an excuse for justifying low expectations is unconscionable.
Not every blind person who has attended an NFB center is a success; not every blind person who has received conventional training or, for that matter, received no training at all is a failure. Yet NFB training is not more or less the same as other training. Yes, the same skills are taught: cane travel, Braille reading and writing, cooking, and computer technology. But it is not true that the outcomes are the same. NFB orientation and adjustment centers do in a concentrated way what the Federation has done for blind people for all of its sixty-three-year history: give blind people the means to challenge society's and, all too often, their own, low expectations. As with the Federation as a whole, NFB training centers help the blind person learn that life is not limited by the physical characteristic of blindness as much as it is by low expectations. Training gives the blind person the confidence to believe in a future in which he or she will face discrimination yet will have the skills and the strength to meet and overcome it.
NFB centers do not teach skills in isolation from philosophy. In fact the life-changing dimension and extraordinary vitality of NFB centers arise from their imparting of the philosophy of the National Federation of the Blind. Therefore to encourage blind people to believe that any training center is pretty much like any other goes far beyond a factual mischaracterization and is fundamentally misleading to people who have not been truly informed about the differences.
How then does an individual exercise informed choice in selecting a training center? To be truly informed, the blind person must meet graduates of training programs--not just one or two, but many. The blind person needs to learn what these graduates are doing with their lives. Are they in school? Are they working? Are they married and raising families? Are they active in their communities? Are they pursuing hobbies and social interests? Are they going to the theater, the ball game, restaurants, shopping, and movies? Or are the graduates mostly spending time at home, explaining that they really prefer quiet, are not people persons, haven't quite decided what to do with their lives, and are often considering maybe getting a little more training in some aspect of blindness skills that they didn't quite master or keep up with after their training--good as they assure everyone it certainly was.
So where can a blind person go to meet normal blind people, the ones getting out and doing things and getting jobs and moving ahead with their lives? The easiest way is to attend the convention of the National Federation of the Blind. At our national convention one has an opportunity to meet blind people from throughout the country. Some will have received training from NFB centers; some will have received training from conventional programs; and some will have received no training at all. What blind people with all three backgrounds at an NFB convention have in common is the commitment to the Federation's approach, to the combining of skills and confidence, whether they received this knowledge through an NFB training center or more broadly through contact with the National Federation of the Blind.
The collective experience of blind people distilled and focused by the Federation enables the blind individual to begin to gain a perspective broader than his or her own experience and begin to see what is possible for blind people, given training and opportunity. One cannot attend a national NFB convention and fail to be impressed by all that we have achieved. One also cannot attend a national convention and fail to be moved by all that remains to be done. At national convention one meets young blind children and their parents and learns of their hopes. One meets blind college students preparing to assume future leadership, blind adults working in every conceivable job or occupation, and blind seniors determined not to sit quietly in the shadow of nonparticipation.
True choice can be exercised only when a person has real information--perspective on which to base his or her choices. Selecting orientation-center training is the foundation on which one can base either future achievement and success or a future of genteel occupancy of the quiet sidelines of life. Choice is not the simple selection of a long or short cane--rigid or folding; not the choice of one class and not another; not the choice of training nearby rather than in a distant city. These things are only the trappings of choice, not its substance.
How then does one begin the process of making an informed choice? Those who are serious about embracing informed choice might begin by calling their NFB state presidents to learn when and where the local Federation chapter meets. If none exists in the area, they can ask for help in starting one. Going to Federation state and national conventions to meet people and become involved is also an excellent early step. Such actions commit one to the movement of blind people working toward first-class citizenship. Contributing time, money, and talent to help build a future in which blind people are judged by their ability and not by their blindness can be a powerful step in learning to believe in blind people.
Having established this foundation, any blind person can eventually decide that the time has come to call the director of one of the NFB centers and ask for help in working with the state rehabilitation agency to support individual participation in training. Everyone has the right to exercise the right of choice, but the most important right is to exercise the opportunity to make an informed choice based on information and perspective--a choice that will serve the individual for a lifetime and provide the training and confidence to live life exercising personal interests and ability rather than living a life of limited participation based on low expectations.