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.