[Home-on-the-range] A fantastic article from the April Braille Monitor!

[eschlenker at cox.net]

Hi, everyone. Below is an article from the April 2017 Braille monitor. Tom
Page suggested I read it, and It was so good, I just had to share it with
everyone. I hope it can answer some questions about, and articulate the idea
that blindness simulations or dining/living/walking in the dark events can
cause more problems for the blind community than they solve.

Enjoy!

 


Walking a Mile: The Possibilities and Pitfalls of Simulations


by Mark Riccobono

>From the Editor: Since a central tenet of the National Federation of the
Blind is to change the way people think about being blind and by extension
to increase the opportunity for those who are, we must think seriously about
the tools we have to bring about this transformation. Simulating blindness
has for some time now been a way in which we and others have sought to
increase the public's understanding of what we need from it in order to
enjoy lives that are as rich and productive as those of people who can see.
In this article our President discusses the subject of blindness simulation,
how it is used, the reasons for its use, when it is effective, and when it
serves as a stumbling block that comes between blind people and our dreams.
Here is what he says: 

One of the highest aspirations of human beings is to understand one's
fellows, to know the world as they see it, and to share empathy without
judgment or condemnation. Long before I heard the word empathy I was
familiar with the adage, "You can never really know a man until you have
walked a mile in his shoes." Since we don't all have the same size feet,
what is the practical way to take this journey? Traditionally we have tried
to do this by spending some time learning about and reflecting on another
person's life situation: What is it like to have money? What is it like to
be without it? What is it like to have a disability?

For the past few decades the attempt to understand another person's life has
been to try simulating it. Some of the most popular simulations have
involved letting a nondisabled person spend some time as a person with a
disability. The motives behind these simulations are as varied as the ways
in which they are conducted, and here I'd like to look at what they are, how
well they work, and specifically what a simulation is intended to
communicate.

Given the complexity of life, a reasonable question to ask is whether
simulations not meant to train but to inform can ever serve a purpose. They
can, but making sure they communicate what we want them to takes
considerable thought, a clear definition of what we want to communicate, and
an understanding of how much a person can absorb at one time. 

Let's look at a common disability simulation that seems to work, one in
which a person is asked to spend some time in a wheelchair. If I am a user
of a wheelchair and want the public to understand the lack of access I face,
putting someone in a chair and showing him how impossible it is to reach a
doorknob, walk a flight of stairs, or cross a street at which there is no
ramp works quite well. I have not asked him to function without one of his
senses; I have only asked that he sit in a chair and observe how many things
are beyond his reach because we have failed to make simple environmental
changes that will benefit everyone in a wheelchair and everyone who is a
pedestrian. The problems become obvious and so do the solutions, ones
society can implement with minor physical changes.

If I spend an hour in a wheelchair, do I really understand the life of the
man who uses one? I do not. I have to take his word for the way it feels
when people talk down to him, stand behind his chair to converse, or show
the pity they feel for him when they define his existence as being confined
to that chair. To the extent that I am able to understand, that
understanding comes through observation, conversation, and through the
building of a personal relationship. 

Of course the goal of his simulation is not to get me to understand the
condition that requires his use of a wheelchair, but to glimpse the
environmental changes to make dealing with it easier. I come away
understanding why my city taxes go for ramps and why we require all public
facilities to have elevators.

Before discussing the simulation of blindness, let's distinguish between
simulations to help blind people function without sight and getting sighted
people to understand blindness. We actively encourage blind students to do
some or most long-term training under learning shades. If one has some
vision, we encourage training that does not rely on it but relies on
alternative techniques. In a society that is overly interested in visual
cues, most people are quickly conditioned to subconsciously believe that
vision is a requirement for success. Through our intensive training programs
we break down the misconception that vision is the requirement for success
and build the understanding that a variety of techniques including a robust
set of nonvisual techniques can empower a blind person to live the life they
want regardless of their level of vision. At the end of training, one's
unreliable vision is no longer at the core of what he or she can do but
serves as a supplement, and the individual can make an informed decision
about which technique (nonvisual or visual) or combination of techniques is
most effective. The loss of more vision due to age or deterioration through
disease will be uncomfortable, but limited vision will not determine whether
one can independently learn, travel, cook, clean, handle money, and a whole
host of other things for which sighted people use vision. What is key in
training is that students are allowed to proceed slowly in what they do
under learning shades. There is time to explain the underlying philosophy in
their use, they have the time to observe blind people doing what they will
be asked to do, and the message is always that the students can and will be
able to do what they need without vision. More importantly, the student has
the opportunity to build an understanding of how to counteract the
misconceptions and misunderstandings that come from interacting with a
public who does not understand blindness. 

Unless simulations are well planned in terms of what we ask people to do,
what we tell them about blindness, and how long we have to work with them
under shades, the experience is likely to be more negative than positive,
reinforcing everything they have felt about the world of darkness in which
they believe we live.

I submit that, in most cases, understanding blindness by one who is sighted
is better communicated through observation than personal experience. Ask a
newly blindfolded person to travel the streets so she comes to understand
the value of traffic sounds, and her predominant emotion will be fear.
Without understanding how blind people travel and having the confidence that
she can do so safely, the experiment will scare rather than inform. How then
can we make a case for modifications that are necessary for our continued
independent travel? The answer is for us to do the traveling and for the
person we are trying to influence to observe us. When I am observed walking
with my cane and run into a guidewire hanging over a sidewalk at chest
level, the person watching me understands the function of my cane, what it
can and cannot detect, and how the problem I'm experiencing can be solved if
the guidewire did not pass over the sidewalk or did so at an angle that
wasn't impossible for a cane to detect. Now it becomes clear that the
challenge is one for an engineer, and the work done will benefit everyone
who walks that sidewalk be they blind or sighted.

Suppose I want someone with influence to understand the difficulty when I
try to use an inaccessible program. If he is blindfolded and made to sit at
a computer, what simulation can we do? He may understand the concept of a
screen reader, but will he know that most programs say a line when the
insert and up arrow keys are pressed? Will he understand that movement
between programs is done by pressing the alt and the tab keys and that
determining which program has focus is accomplished by pressing the insert
key with the letter t? The answer is that he won't. His initial impression
will be that using the computer as he knows it is impossible and that a
number of complicated key presses is difficult when compared with the point
and click methods that constitute the majority of his navigation.

On the other hand, suppose he observes me using a computer with a screen
reader and a Braille display. When he watches the screen, hears what I hear
through computerized speech as I navigate, and listens as I read what is
presented under my fingers in Braille, he is likely to understand the
problem that exists when I encounter graphics that aren't labeled, buttons
that aren't identified, and programs that will not respond to keyboard
presses. He will understand that navigation in addition to what is provided
by a mouse is required and can see how easily arrow and tab keys can be used
to efficiently navigate when I show well-designed programs.

I have talked with many sighted people about the difficulties posed by
misguided individuals we encounter in airports and the extra stress it puts
on blind people. The physical travel through airports is mostly
straightforward, even if getting information generally posted on signs is
not. Although I have talked with people about the problems we encounter,
there is no better simulation than traveling with a sighted person and
letting them observe for themselves. As they watch the looks on people's
faces; have the opportunity to tell people that they are not my caretaker
but rather just a friend; witness me being grabbed, pushed, and pulled; and
overhear the difficulty of my getting a simple question answered they
understand in a meaningful way things that it was hard for them to believe
when I first told them.

I think the question we really need to address is this: Do I want the
general public to know what it is like to be blind? Not really. In the first
place I don't think they can. Many sighted people are convinced the blind
see darkness; the reality is that some blind people do not see anything
while many others see some unreliable combination of light, shadow, and
color (that often varies from day to day). The understanding of blindness is
only complicated by people who have some usable vision and the obsession of
the sighted in understanding what those people see, particularly when that
vision varies from day to day. Those who can see think I live in a world
which is dominated by the absence of light, a world that deprives me of much
that is meaningful. I contend my world has all the elements that make life
worth living: the ability to experience love, to know the joy of happiness,
and to raise my family. I know both the joy and the stress of being needed,
the imperative of making a living, and what it is like when my children look
to me in their attempt to understand the world. In short, the important
things in my life are the same as for the person who sees, with variations
that are sometimes difficult but which never obscure the joy of being human.

I want the public to understand those parts of blindness that pose obstacles
they can help me overcome. I want them to see how training can make all the
difference and is deserving of their private and public support. I want them
to understand that for training to be meaningful it must be followed by
opportunity. True opportunity means more than failing to say no; it
aggressively embraces the journey to determine how to say yes. I want people
to understand that independent travel is crucial and that one important
element that makes it possible is an environment in which cars make enough
sound that I can hear and respond to them. I want people to understand that
living in my own home is important and that my home is just as much a castle
for me as theirs is for them. To live independently means being able to do
the things they do: cook, clean, and enjoy the entertainments found in most
homes. A challenge for me is that most new home appliances use visual
displays that make no allowance for those who cannot see. Adding a function
to make stoves, ovens, refrigerators, dishwashers, clothes washers and
dryers talk is not only possible but inexpensive and beneficial to all,
including senior citizens. I want the public to understand that the internet
presents great opportunities for access to information as long as the
websites are built with equal access in mind. Otherwise, I need to spend
twice as much time trying to book an appointment at the doctor, find
information about city services, read the calendar for the school our
children attend, report crime information, or dozens of other things people
take for granted. These are areas in which the general public can help,
creating a community standard that considers unthinkable leaving out people
whose inclusion could so easily be accomplished through inexpensive design
and manufacturing techniques, of which there are many examples.

To restate, in time I believe I can change people's perspective about the
meaningfulness I find in life, but that belief about living in a world of
darkness may be something they take with them to their graves. Perhaps they
can't really walk a mile in my shoes, but they can help me get to the place
where I can purchase those shoes and enjoy my journey through days of
adventure, activity, and living life to the fullest.

Even if we can effectively provide experiences to teach sighted people about
the artificial barriers we face in the physical and digital environments we
encounter, we cannot fully get them to understand the emotional experience
of facing low expectations in society every day. A couple of years ago I was
in a leadership program in Baltimore City. During that program we spent a
morning in a "walk a mile" activity where we simulated the experience of
navigating the struggle of a low-income family attempting to meet the
demands of life. The activity helped me understand the barriers that poorly
designed social services, lack of reliable transportation, and burdensome
supports put on a family with limited means. However, my real understanding
has come from interacting with and knowing people who live that experience
daily and who can share all of the social bias they face. In other words, I
think we need to be completely honest that any simulation activity does not
impact some of the most important understandings we want the sighted to know
in their heart and their head-that blindness is not the characteristic that
defines us, that the misunderstandings and low expectations about blindness
are our biggest obstacle, that those misunderstandings create artificial
barriers that prevent us from fully participating, and those false
limitations build into something that holds us back. 

Short of training blind people to be blind, are there simulations we can do
that will let sighted people glimpse how we do what they do? I believe the
answer is yes. We must make it clear that they are not experiencing
blindness but that we are giving them a taste of the way we do some of our
daily tasks. Having them sit in a chair, covering their eyes, and handing
them coins can show how we identify them by touch. Dropping a coin on a hard
surface and helping them learn the denomination by sound provides them
another clue about how we manage money and adds to the message that we have
quality alternative techniques that serve well in our daily lives.

The tasks we give should not be threatening. If we want them to spend some
time using a cane, explain that they will not be encountering steps and that
their job is to find the wall in front of them. Tell them their task is to
navigate around a chair and how the cane is used to detect it. Get sighted
people to measure something with a click rule and mark a precise spot. Teach
them how blind people effectively pour liquids without spilling, and give
them an opportunity to practice. In a short amount of time I have been able
to teach sighted people under learning shades to pour, and when I have given
them the option of using the same technique to pour a cup of coffee for
themselves many do so and have little trouble. There are dozens of other
examples, and we should find ways to share information about the activities
that work best. The activities must be supported by meaningful dialogue with
blind people in an environment set up to facilitate honest communication.
When those going through these experiences have an opportunity to engage
blind people around some of the questions we know they are thinking about, a
new avenue of understanding is created.

So far we have not touched on one critical facet that determines whether a
simulation of blindness is helpful or harmful, that being the motivation for
performing it. This is further complicated by the fact that simulations are
often paired with fundraising. This incorporates all of the baggage and
emotional strings that come with the typical charity model-people
participate to help those less fortunate than they are. The biggest problem
with simulating blindness is that it all-too-easily plays into the sense of
loss and ineptitude that people believe to be our lot in life and the lives
they would live were vision to disappear. This benefits organizations whose
goal is to reverse or eliminate blindness, the recent activities of the
Foundation Fighting Blindness being a prime example. If the idea is to
eradicate blindness by raising money for research, scaring people is a
powerful motivator. As much as all of us support research to preserve or
perhaps restore sight, raising that money must not make living more
difficult for we who are blind. Preserving sight should be supported on the
many merits of vision and not on the portrayal of its absence as a
significant barrier to the enjoyment of life. 

So each of us must ask the question: At what cost is the way money is raised
to do research too high? When we fight for the right of blind people to be
parents and an organization suggests that the sighted try being a parent for
one minute with their eyes closed, the experience can only serve to
emphasize the danger when a young child is not observed, a situation
bordering on leaving her unattended. The cost to blind people is too high!
When one is encouraged to dine in the dark without first learning how to
serve oneself, cut one's meat, or have the experience of finding one's mouth
with a fork, how can the mess and the message be reconciled with blind
people leading lives of independence in which we can feed ourselves, teach
our children, and represent our employers without embarrassment when the job
calls for us to attend lunches and dinners? Again, the cost to blind people
is just too high! The potential to raise money through fear and pity is
enormous, but so is the toll on the lives of blind people and the efforts we
make to convince others we are capable of living in the world as competent
human beings. 

Everyone has freedom of speech, but with that freedom comes the
responsibility to speak truth, to do no harm, and to advantage rather than
disadvantage the people about whom one is speaking. Because we in the
National Federation of the Blind are the authentic voice of blind
people-representing the broad diversity of people who experience blindness
firsthand-we must raise expectations and lead the way regarding best
practice for simulation activities. We must also honestly evaluate what we
do and whether it meets our goals, the test of our philosophy about
blindness, and ensure that it is authentic to the experience of a blind
person who has had training and opportunity. We must make certain that the
simulations we do meet this standard and should demand that others do the
same. These should be our guiding principles as we teach the world what it
means to be blind, and these should be the standards to which we hold other
organizations who would diminish our lives and opportunities in the
misguided belief that a quality life can only be achieved if one is sighted.


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