[PHOTO/CAPTION: Dr
[PHOTO/CAPTION: Dr
The Braille Monitor
October,
2003
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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.
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