EMBRACING OUR WORLD Daniel Kish, M.A. / M.A. / coms Copyright 2003 WORLD ACCESS FOR THE BLIND TABLE OF CONTENTS I. EMBRACING OUR WORLD - we share this world together. A. Living life richly and productively is about learning to embrace the world, and garner its embrace B. We share and compete for the same resources. 1. Life doesn't give anyone a special break 2. It is our responsibility to prepare our children ... to open these opportunities for themselves. C. We embrace our world when we realize that we can dream freely and grow to fulfill our dreams. 1. It is the experience of unfolding into man or womanhood, knowing that our lives are ours to lead. 2. For the sighted all of these things come ... easily and naturally. 3. For the blind, these achievements are not necessarily automatic or promoted. 4. ... it's all okay. D. Some real examples E. I wrote this document with the hope of explaining how we can help our blind children and students embrace our world. II. SELF EVALUATION: ... become aware of our own attitudes about our children A. In what areas do we hold different expectations B. In what ways do our blind children and students depend on others C. In what respects do our children and students not have equal access D. What is our children's' and students' level of performance relative to their sighted peers? E. Do our children and students have conventional social interactions with their sighted peers? F. How long does it take our children and students to execute ... tasks? G. Do our children or students ... participate in community functions III. THE POWER OF EXPECTATION A. The Expectancy Effect: ... people ... tend to respond to what is expected of them. 1. Prejudice: 2. Self Fulfilling Prophecy: 3. Learned Helplessness: 4. If a few simple studies can show the marked effects of a little expectation ... imagine what a lifetime ... of negativity about blindness can do to a blind child. B. Some questions to ask ourselves: 1. What do we want our children ... to become? 2. What are our greatest fears for our children C. ... the biggest impact on who we become does not arise from chance or providence, but instead from how we are raised D. ... we want our children ... to achieve a quality of life comparable to that of those around them. E. In order for someone to achieve a quality of life similar to others, one must be able to do things similar to what others do F. Impossibility is in the eye of the narrow-minded. 1. I have personally seen at least five children learn to walk after their parents were informed that this might be impossible. 2. ... blind individuals hold good jobs in just about every ... career 3. Until 1996, Orientation and Mobility certification was withheld from totally blind individuals G. How do we know what potentials can be reached, unless we strive ... to reach for them? IV. THE VISUAL SUPREMACY FALLACY - A. This falsehood arises primarily from those sighted people who use and need their sight for nearly everything. B. Such a philosophy is understandable but may be considered "sightedist," C. In humans the eyes occupy less than 0.001% of the body's weight. D. The sighted cannot readily understand the blindness experience. 1. A blindfolded sighted person does not ... experience ... a blind person's experience. 2. ... sighted people emerging from a blindfold experience too often exhibit reinforcement of their own initial myths and fears about blindness. 3. The sighted tend to project their own helplessness, neediness, and vulnerability in the dark erroneously on to the blind, 4. It can be argued that the blind don't even hear or feel things the same way sighted people do E. With additional disabilities, the same basic idea applies. 1. Helen Keller ... has risen as one of the greatest historical figures 2. I had a totally blind student, with a prosthetic leg ..., who swims competitively, bicycles, runs, hikes, ski's, repels, 3. We have also seen autistic people rise to the public eye. V. THE VALUE OF DEEP ATTENTION A. People can see it with their eyes and hear it with their ears but never grasp it with their minds. B. It will be helpful for those who are sighted to put their vision aside in order to understand the dark. 1. I don't mean a few minutes under a blindfold. 2. The sighted cannot develop an understanding of the blind experience as long as all of their visual ways of thinking stand in the way. a. A parent once asked me ... how a blind person can use the sun for orientation. b. A commonly asked question is: "How does a blind person know when a car is coming?" 3. The sighted have often overwhelmed themselves by the bulk of their own vision. a. ... an 8th grader ... found it very difficult to grasp how a person could dream without visual images. b. One of my low vision students expressed surprise ... when I mentioned that I used the creek to help me know where I was. VI. FACTORS IN SHAPING A CHILD TO GROW-UP TO EMBRACE THE WORLD - A. The child travels most places without guidance B. The child keeps his cane with him most of the time and uses it C. The child keeps track of her own things D. The child participates equally in domestic management. E. The child participates in the community. F. The child engages comfortably in all activities of daily living with little help G. The child is disciplined in the same manner ... as other children H. The child gets hurt from time to time. I. The child is allowed to grow up. J. The child engages primarily in active or interactive rather than passive activities. K. In general kids grow up to become normal by growing up normally. VII. WE MUST CONCENTRATE ON THE PRESENT AND FUTURE A. We're going to talk about what we ... have done right and wrong B. Some of you may not want to hear ... what we'll discuss. C. We may touch on some mutually painful chords. D. I cannot speak as a parent, but I can speak as a product of this society and as one who has observed many products arise from many different backgrounds E. I do not judge, because I have made my share of mistakes - VIII. BROADENING PERSPECTIVES A. ... we're going to see that blindness really should not be considered so much a disability but rather a condition or style of living. B. Advantages of blindness. 1. Mastering fear of the dark means mastering ourselves and the world. 2. ... you form your own self and your own path. 3. ... social familiarity. C. It's easy to screw up a blind kid. D. ... blind people hold just about every imaginable job E. Is vision a necessary prerequisite for survival in modern human society? F. There are many species of bats, birds, dolphins, and whales who have poor vision ... and who carry out all the major functions of life that sighted animals do. G. What is "disability?" 1. Definitions and considerations: a. ... "impairment" refers to the malfunctioning or absence of a part of the body. b. ... "disability" refers to a lack of ability to perform certain functions, c. ... "handicapped" refers to difficulties in functional performance resulting from barriers or impediments that are imposed by forces external to the individual. d. A colleague ... asked, "If someone with impairments can lead a fully productive and enriched life while someone with no impairments can't, what does disability really mean?" e. ... disability could be defined as: "A lack of capacity to function in life due to diminished access to physical, psychological, and/or social resources." 2. Few would argue that a blind person's lack of vision can negatively affect his relationship to the world. a. Access to Internal Resources: (1) Psychological: "What doesn't kill us makes us stronger." (2) Physiological: It is often said that when a sense is missing, our other senses become stronger b. Access to external resources: (1) The physical world: (a) Personal Adaptation: ... use of tools or technology to make use of the same information without altering the way that information is presented. (b) Accommodation: ... design of the environment that specifically allows functioning of the individual. (2) The social world: (a) ... neuro-physiology may develop to heighten awareness of social cues that compensate for the lack of vision. (b) Psychological: A blind individual must develop stronger powers of attention to maintain awareness of these subtler social cues. (3) The symbolic world: ... A few examples: (a) Finding a hotel room: (b) Finding a street: (c) Paying the bills: (d) Shopping: (e) Money? Credit cards? ATM'S? (f) Greeting cards: (g) Forms and applications: (h) Operating gadgets and appliances: (i. Laundry: (j) Transportation: (k) ... home improvement, landscaping, gourmet cooking, carpentry, electrical work, automotive repair, ... 3. The biggest functional difficulties imposed on the blind are rapid transportation, and access to printed or graphical material. 4. ... If every piece of information available to vision was also available to hearing or touch and rapid transportation were expanded to be efficiently accessible to the blind ... about 75% of the barriers faced by the blind would fall away. 5. The fact that the blind face enormous functional difficulties ... is ... a matter of deficiencies in the relationship between the sighted world and blindness. H. Interdependence - independence vs. dependence. 1. Take driving. ... It is an inclusive social network, an exchange of goods and services, that makes driving possible. We all depend on others to provide services and equipment that allow us the privilege of driving. 2. Take reading - who prints their own material and who manufactures their own video screens? ... the sighted ... are reading labels that someone else provided for them. This provides the illusion that they are more independent. 3. Take lighting - How wonderful that the sighted have artificially made light available just about everywhere 4. The three public documents that most denote our freedom are denied to the blind - the driver's license, monetary notes, and the voting ballet. I. Ways to thwart independence. IX. COMMON MYTHS ABOUT BLINDNESS A. "Blind people have more acute senses." 1. Blind people don't "have" anything. What they get, they usually earn 2. The sense organs of the blind are exactly the same as those of the sighted. The brain and mind simply adapt themselves to maximize and optimize the use of the input from those sense organs. B. "Blind people are child-like - 1. I take exception to these guides ... about "What to do if you meet a blind person." 2. On average, blind people do ... demonstrate weaker physiology, but this trend has little to do with blindness. C. "Blind kids take longer to learn to read, because Braille is hard to learn. 1. Braille is actually little more complicated than print. 2. The difficulty in learning to read nonvisually ... is not necessarily a matter of the supremacy of the visual system. D. "Blind people should stay away from sharp implements ... and ... power tools." E. "Blind people should move slowly, and never run. 1. This myth is held to some degree even by Orientation and Mobility Specialists 2. Slow movement tends to give rise to anomalous gait patterns a. I had a totally blind student with a prosthetic leg from the knee down who walked faster than I do. b. ... Alignment is particularly important to the blind. c. ... If you've ever tried walking on a boat, train, or bus, you know that increased speed also increases balance. F. "Vision is the most important sense for learning." 1. If this is true, then deaf people should "have it made" 2. Much is available through nonvisual channels if we choose to make it so. G. "Blind people shouldn't cook 1. Cooking is among the easier of the tasks that can be learned. 2. I remember a rehab counselor saying to one of my students, "When we do cooking, we'll use the electric stove, because open flames are dangerous for blind people to cook over." 3. Two of the best and most creative cooks that I know are totally blind H. "The blind learn best through formal training by specialized professionals, 1. ... I never went through special programs to learn what I know. 2. I think this myth arose from parents who were too afraid of doing something wrong and professionals who have gotten too caught up in "the proper way to do things." I. "It is the responsibility of the sighted to care for the blind." J. "The blind are defenseless in situations of combat K. "The blind cannot appreciate the world's beauty." L. "The blind need the sighted to lead them and tell them what to do." M. "Those few blind people who really succeed in life are special. We really shouldn't expect that of everyone. N. "Blind people are courageous." O. "Blind people aren't good at math or science P. "All blind people cannot see. Low vision is no vision." 1. Legal blindness is defined by ... less than 10% of normal vision. 2. How well a person performs does not necessarily depend on how well they see, but how well they use what vision they have. 3. Are you half as capable as a person with twice your vision (20/10)? Q. "Blind people are best off with dog guides so that the dogs can take care of them." 1. ... only about 5% of blind people use dogs. 2. ... dogs don't take care of people; people take care of dogs. Dogs have neither the intelligence nor experience to take care of a person. X. THE NORMALCY OF BLINDNESS. A. Blind people constitute only about 1% of the general population B. ... from the dawn of recorded history, the blind have been held aloof as ... mysterious and enigmatic C. Though I am blind, ... I possess the same basic psychological, social, and physical needs that all humans D. The distinctions drawn against the blind are man-made, but does life itself care who's blind 1. ... In a world where we must all strive with competition as well as cooperation for the same resources, those who perform less well or strive less ardently or competently typically obtain and hold fewer things. 2. ... "God helps those who help themselves." 3. A study was conducted on sighted and blind high schoolers performing a variety of physical tasks. ... it was determined that the blind students expended 25% more energy to accomplish the same tasks. 4. ... Life doesn't make allowances for what's fair or not; it merely requires us all to do what we must to gain what we want XI. SOME MORE BLINDNESS NORMALCIES A. Kids are kids first and blind second. 1. ... the emphasis should focus on the things that benefit normal kids and finding adaptive ways to provide those same things to blind kids. 2. Everything we do with our students and children must come from knowing that they need to function similarly to all other kids. 3. Though there are a few special needs, these needs ensure normalcy, not detract from it. B. Blind kids must do what they cannot see. 1. Blind kids can learn what they need to learn, but they have to DO it. 2. Sight isn't magic; it's just one way of doing things. C. Blind kids, like all kids, MUST experience freedom of movement. ... Common results of restricting movement include - 1. Impaired movement skills. 2. Low overall physical capacity 3. Apathy and lack of ambition. 4. Self-stimming 5. Inappropriately strong reactions to mild circumstances 6. Hands that remain baby smooth. D. Blind kids, like sighted kids, need to grow up and at roughly the same rate. E. The phrase "I can't" eats success. F. Blind kids, like sighted kids, have difficulty interacting with stimuli or targets that they cannot perceive. G. Blind kids benefit from good, conventional, parenting H. Blind people benefit more from doing for others than being done to by others. ... We have a tendency to cast the blind in the role of the recipient rather than the provider of care. ... Too much of others' doing for one chips away from one's capacity to do for oneself and diminishes one's sense of self worth. I. Being responsible teaches responsibility. 1. Holding blind kids responsible for their actions and for pulling their own weight in a household teaches the basics for learning to pull one's weight in society. 2. It helps blind kids to get out of their own heads and become more aware of the need to interact constructively and productively with the world 3. It teaches them that they can make things happen for themselves, and it teaches the value in helping to make things happen for other people. 4. What chores might a blind kid be assigned around the house and yard? XII. SIMPLE, KEY FACTORS THAT MAKE THE BLIND SUCCESSFUL A. No one important ever convinced them that they couldn't do any given thing because they were blind. B. They were treated as normal kids. C. They were allowed to test their own limits by trial and error rather than face limits imposed by presumption. XIII. COMING OFF IT, GETTING WITH IT, AND MOVING ON - A. Get rid of the guilt. B. Keep our pride in perspective. We don't do our kids any favors by being proud and fawning over simple accomplishments well beneath their level of ability. C. Close collaboration and mutual follow-through among all members of the educational service team is crucial. D. We need to seek and use the knowledge of others' experience - E. Lift the limits and free the children: ... If we want our children to enjoy the full range of riches that this world has to offer, we can't say can't, and we should never say never. F. Some of us may need to institute some changes in the way we approach our students and children, but ... We get into habits that are hard to break, and we come to accept unacceptable or maladaptive behaviors out of custom. G. Responsibility and attention, not vision, are the keys to competence. H. "Sticks and stones may break their bones, but names WILL REALLY HURT THEM." I. The earlier the easier, but it's never too late to start. XIV. IMPORTANT FACTORS IN HELPING VISUALLY IMPAIRED CHILDREN GROW - A. I don't intend for the following list of points to be overwhelming or confusing. 1. Kids are kids, blind or sighted; treat them the same. 2. Remember that your child is every bit as important as any other child. B. Parental Cause and Effect - action and reaction. 1. What do you want your child to be when he/she grows up? 2. What you do this minute will impact your child's course of growth forever. 3. Growth does not happen later, but now. C. Think Beyond Your Vision 1. Vision is not our only sense. 2. We ... tend to believe that our way of doing things is the best 3. Do not think of sight as the primary attribute that enables a person to function? 4. ... It is not how much we perceive, but how well we utilize what we perceive. D. Unless there are additional impairments, a visually impaired child is only that - visually impaired. E. The Brain Must Have Practice To Compensate for Disability. 1. The sense organs stay the same ... but the brain modifies itself so that information ... is processed more thoroughly ACCORDING TO NEED. 2. Because vision is often the easiest way to gain the most information, the brain optimizes its receptivity to visual input. 3. The process by which the brain can be taught to reorganize itself to optimize its receptivity to sensory inputs other than vision REQUIRES PRACTICE F. Make the Environment Accessible G. "Low vision" is not the same as "blindness" and should not be thought of or treated as such. H. Facilitate Stimulation That Has Meaning I. Facilitate Intellectual Development, especially Language. 1. The visually impaired can learn some things through words ... that most others may learn by visual observation. 2. Research shows that, children who were read to when very young perform better in school than children who were not. 3. Books in Braille are excellent for stimulating intellectual growth. 4. Low vision children may learn by visual observation, but care must be taken that they get a good look. 5. Brain power is an excellent and necessary adaptation for vision loss. 6. ... one should not use words to replace actual experience. 7. A visually impaired person must be really creative and clever to figure out how to do things without vision in a sighted world. J. Encourage and Facilitate Physical Exploration K. We Must Not Punish Our Children for Being Visually Impaired. 1. When we punish normal children, we often do it by the restriction of movement 2. We often limit the movements and freedoms of visually impaired kids in the same ways L. Allow your children the freedom to get hurt. 1. Getting hurt is ... part of growing up 2. When the flesh is not strengthened by trial and experience, the spirit weakens. M. Encourage lots of activities with the hands such as puzzles, hand toys or games, 1. ... blind children do not usually draw, print, or color. 2. There's no need to clutter the environment with toys that make noise. N. Facilitate Organizational Skills. 1. The visually impaired do not know where things are by looking, but by systematic strategies of exploration and by mental recall. 2. Make the child keep his or her own room clean and organized. O. Discipline should be rendered no differently to a blind child than to a sighted child. P. Encourage the Child to Grow-up. 1. A child who is babied into adulthood learns to be a very large baby. 2. Allowing your child to walk unassisted is an important part of this process. 3. Pity is a visually impaired child's worst enemy. 4. Developmental considerations. a. Tips for feeding: (1) It should not be necessary to feed your child past the age of 3 or 4. (2) When using silverware, a blind child may use the shape of the handle b. Tips for dressing: (1) A child should be dressing himself by the age of 6 or 7, (2) There is absolutely nothing to prevent a blind child from being able to put on his or her own clothes. (3) Clothes should either be neutral colors, ... prematched on hangers, or ... coded with tags or buttons that can be matched by touch (4) Forcing the child to keep the closet organized will facilitate a child's ability to learn to manage his/her own clothes. Q. Do not think of your child only as someone needing help from others. Think of him or her as ... one who is empowered with a wealth of abilities and gifts that are worth sharing. One of the most common traps involves the recruitment of sighted siblings ... as caretakers. R. Ensure Normal Social Development - S. Honor the Child's Current Abilities While Holding the Highest Expectations for Achievement - T. Do Not Relinquish Your Child's Development to Professionals - 1. Professionals usually have good intentions, but their efforts will be intensified with your ... involvement. 2. School districts and other public agencies often prioritize fiscal management ... over human growth. XV. RESPONSIBILITY OF THE SCHOOL DISTRICT - A. Support and specialized personnel: 1. Classroom teacher: 2. Teacher of the Visually Impaired (TVI): 3. Orientation and Mobility (O&M) Specialist: 4. The Braille Transcriber: 5. The Adaptive P.E. teacher (APE): 6. Full Inclusion Facilitator: 7. Resource Specialist (RSP): 8. Assistive Technology (AT) Specialist: 9. Temporary Support Assistant (TSA) 10. The Rehabilitation Counselor or Teacher: B. The district must provide all materials and equipment necessary to enable the blind student to participate fully and equally in all aspects of the school curriculum 1. Academics: all ... written or presented materials MUST be provided in a format that your child can use comfortably on time a. Pull out and mainstreaming or inclusion: b. Curriculum programming: 2. Physical Education, a. The P.E. program: b. Adaptive P.E. (APE) c. Recess and lunch: 3. Special accommodations: a. Preferential seating: b. Time-and-a-half/double time: c. Reduced assignments: C. Special circumstances for multiply involved kids. 1. Additional professionals ... and their special relationship to blind kids a. Occupational therapist (OT): b. Physical Therapist (PT): c. Speech and Language Therapist: d. Deaf and Hard of Hearing Specialist (DHH): e. Psychologist: f. School nurse: g. Assistive and Augmentative Communication Specialist (AAC): 2. When dealing with students who have complex profiles, it is paramount that all members of the service team maintain contact and collaboration about student progress. This often requires a lead person to coordinate the case - usually the Resource Specialist or Inclusion Facilitator. This person should be designated at the I.E.P. You cannot just do without this person and hope for the best. Everyone needs to be on the same page. Progress is very slow when each person is off doing their own thing without input. In particular, it is usually helpful for the OT to be working with the TVI, the PT to be working with the O&M and Adaptive P.E., Speech and Language working with the AAC and classroom teacher, and the inclusion facilitator involved in it all. D. Individualized Plans and Programs (I.E.P.'s, I.F.S.P.'s, I.T.P.'s, etc.): 1. "Zero Reject": a. Nondiscriminatory Testing and Evaluation: b. Least Restrictive Environment (LRE): 2. Notification and Procedural Rights for Parents (due process and judicial hearing): 3. Right to Public Participation: 4. ... legislation: a. PL 94-142 - the education for all handicapped children act of 1975: b. Handicapped Children's Protection Act of 1986: c. PL 99-457 - education of the handicapped act amendments of 1986: d. PL 101-336 - Americans with Disabilities Act of 1990 (ADA): e. PL 101-476 - Individuals with Disabilities Education Act of 1990 (IDEA): E. Things to watch out for: 1. Don't let your child be shoved into a special day class for most of the day. 2. The aid should not be assigned to watch over your child. 3. ... Do not let your kids get stuck with lots of books or materials on tape; they need them in Braille. 4. Do not let them keep your kid's cane at school. 5. Be careful that your child isn't socially promoted from grade to grade without learning the skills to function properly at grade level. 6. Try providing ... an in-service to your child's class or school about blindness. 7. Services should not be provided strictly in a "consult" model. 8. The term "retardation" or "cognitive delay" should never be applied to your child by anyone ... until all other avenues of perception and learning have been addressed and exhausted. 9. Do not allow your visually impaired child to be placed in a class of orthopedically or language impaired students. 10. Do not allow admission of any psychological assessment material ... unless the testing was done in conjunction with a blindness professional ... and properly adapted for use by the visually impaired. XVI. SOME QUICK AND EASY HELPFUL HINTS A. Eliminate the word "guide" from your vocabulary B. Make your child responsible for ... chores C. Make sure you have plenty of Braille books around D. Enter the child into a community program E. Be sure the child has his cane at all times F. Eliminate the word "can't" from yours and your child's vocabulary. G. Be sure your child has at least one friend close to her age in her neighborhood. H. There are ways to foster productive friendships with blind kids who have other involvements. Social interaction and communication are often the two biggest hurdles for blind kids with additional involvements. 1. Pair the child with someone around 8 to 11 years old. 2. Try hiring a high school kid to be a mentor or big brother, 3. Try formalized Child Mentor or Big Brother programs. I. If your child is really reluctant to grow, or learn to stand on his own two feet, J. Don't let your child rule you. K. Use chimes or some other marking to identify your house if your child has trouble finding it. L. A quick and easy way to play ball with your child is to put it into a spare plastic bag. M. Let your blind child have access to efficient transportation as you would your sighted child. N. Some financial tips: XVII. SOME RESOURCES: A. Parent/Family Groups and Materials B. Books for Blind Children C. Adaptive Equipment and Recreation: D. Organizations Made Up of Blind People - E. Organizations for the Blind - F. Hot-Lines G. Other Resource Guides INTRODUCTION: For my professional background, see my bio available on this web page. For some personal background, look in section 2 of "When Darkness Lights the Way," also on this site. This document has evolved over many years of delivering blindness presentations. Some sections have some perspectives and philosophies that may help you to see blindness in a different way. Others focus more on practical tips and hints. Though this document is intended to be taken as a whole, you may want to browse it and concentrate on those sections of most interest to you. I. EMBRACING OUR WORLD - we share this world together. A. Living life richly and productively is about learning to embrace the world, and garner its embrace of us. We give and take; we develop a kind of relationship if you will with it. When we act wrongly or foolishly, we usually suffer consequences, because we fail to follow the rules of give and take. Likewise, when we are passive and submissive to what life might choose for us, then we place ourselves in the position of merely having to make due. B. We share and compete for the same resources. The blind aren't to live by the charity of others, being content with what's allowed them. The blind must gain legitimate access to the resources they need to live the lives they choose. It is a personal choice of self and mutual respect and dignity which is the only way to participate productively in the world community. 1. Life doesn't give anyone a special break because of blindness. Life is an equal opportunity experience, both kind and cruel to all alike. It does not make special compensations for blindness. Blind people are not blessed; they have to work like everyone else, as hard or harder, to carve their rightful niches or fall quietly into obscurity. 2. It is our responsibility to prepare our children and students with the ability to open these opportunities for themselves. The best gift we can give them is not our charity, but the power to gain freedom and purpose. C. How we embrace our world. We embrace our world when we realize that we can dream freely and grow to fulfill our dreams. It is when we take a stand on our own importance and self-worthiness, and behold the world, more or less, as a bountiful place of opportunity. This may sound idealistic, but it is also very practical. Let's break it down. 1. It is the experience of unfolding into man or womanhood, knowing that our lives are ours to lead. This unfolds from being able to get our own glass of juice without having to ask someone to do it, or ask if it's okay. It's when we learn to walk to school or to a friend's house by ourselves when we wish. It's when we can pick up a book of our choice and read it, without having to wait for someone else to find the time. It's when we catch or kick or hit that ball just right for the first time, and we hear our name in the crowd gone wild. It's when we earn enough money to buy the bicycle we wanted, without having to wait for someone to buy the one they felt we should have. It's going out and ordering fast food with your friends, without having someone say, "not now, you'll spoil your dinner." It's stepping behind the wheel for the first time, car keys gleaming and ringing in hand, and seeing the open road to everything and everywhere stretched invitingly before us. It's reaching out and taking your diploma and knowing we're free at last to choose our own life. It is when we release the helping hand that we have our own hands free. Each such achievement, whether we remember its impact on us or not, constitutes an event of realization - of taking one step closer to being a willing, active, significant, and meaningful part of the world. With each realization, we see a larger and larger world come into our grasp. 2. For the sighted, all of these things come, more or less, easily and naturally. That's because we know as a collective society that these achievements are necessary to bring individuals to productivity. Communities are designed to bring the child and the world together into a mutual embrace of fulfillment. Schools teach kids to read and write, parents teach kids to get their own juice, the neighbors or local establishments allow older kids to work for pay, and the government license's just about anyone to drive as a personal right to freedom. Beyond reaching adulthood, we are welcomed amiably into society's smooth exchange of goods, services, and companionship - except for the blind. 3. For the blind, these achievements are not necessarily automatic or promoted. There's a hic-up, a monkey wrench in the works. To put it bluntly, society has sort of left the blind out of this "group hug" of personal fulfillment and social exchange. Not all schools teach them to read and write. Those who do learn find that the world does not share in their ability, and what they've learned (being Braille) does not seem to open the doors to literacy as it does for others. The body of cultural knowledge is often beyond arm's reach, and the flow of information exchange is often stifled. When they look for jobs to earn money, they are met with consternation rather than willingness, and the money they earn isn't even in Braille. Car keys have no magic power; the road stays closed. With every milestone mounted and every door opened for those around them, the blind are threatened by locks and bars and warning signs saying "keep out," and quagmires of "if only." Instead of arms raised to the clear blue sky with cries of victory, the blind are often left with hands still reaching for help crying "wait for me." They are faced with a world the poses a series of problems, rather than a series of solutions. 4. However, believe it or not, it's all okay. We must ensure that our blind children and students find growth through strength of purpose and personal achievement. It is true that the world will not step forward to take them into its embrace as it would seem to do for others. But, this only means that the blind must actively embrace the world and mount their own milestones to personal achievement. No, it isn't fair, but it can be done, and done with grace. D. Some real examples - 1. One of my former students, now a good friend, had developed an interest in radio equipment as a child. He didn't really play much with the other kids; he preferred listening to the news or to police reports. I remember when he proudly announced that he'd received a police scanner for his 11th birthday. By 13 he had earned his Ham radio's license. By 14 he had joined the Civil Air Patrol, and eventually achieved the status of Communications Officer. By 16, he was working in a cell phone store. By 17 he had interned with the CIA and was volunteering for the fire department. With all this stuff going on, he had to be many different places for many different functions. His parents were busy running their own business, so he hired drivers from his high school. Now at 20, he thinks it might be fun to go into international or political law or both. 2. Me. Okay, let's just talk about me for a bit. I had my own problems learning to embrace the world, believe me. a. I was fortunate to have mounted many milestones toward my own fulfillment and world embrace. If anything, I was pretty cocky as a kid. My hardest struggle lay in becoming aware that I could go wherever I wished and do whatever I wanted. This struggle was partly mastered when I learned to ride a bike and would ride around the neighborhood to my friends' or to school. I remember one time I'd forgotten an important meeting at school (7th grade), and I went home instead. My dad, who was home at that time on a rare occasion, refused to bail me out by taking me back, saying that it was my responsibility. I got on my bike and rode as fast as I could back to school. It was only 3-quarters of a mile, but there were several busy streets that had to be crossed and ridden along. Upon looking back, I'm aware of that experience and others like it, building a kind of stalwart strength of purpose and sense of personal mastery within me. b. When I was about 27, I wanted to take a young, blind friend (13) to Magic Mountain. Though he insisted that we find someone sighted to take us, I wanted this to be just a day for the two of us. He groaned, thinking that this was going to be way too much trouble. I lived about 100 miles from Magic Mountain. I called Magic Mountain and asked them to send me their brochure which contained a map of the park (not in Braille). I had a friend describe the map (where all the rides were), and I took notes using compass headings. I planned the bus to bus to train to bus route (about 4 hours), and we went. We spent the whole day there, and we went on almost every ride twice. We nearly missed our last connection home, but we had a blast. It was probably this event that really opened me to understanding that I could actively embrace the world, to give and take freely as our relationship demanded. c. I've always loved the outdoors - the mountains, forests, and streams - hiking and climbing, and exploring the wilds, and getting away from it all. But somehow, I just never seemed to find the time to do it. I made excuses about how little time I had, but really, I just didn't know how to go about it. How does a blind man get to the mountains, and then go sailing forth into the unknown wilderness? Well, through a series of events that could comprise their own book, I have. I had gone on a group camping trip in which one of the members had touched a nerve about whether a blind person could do it alone. So, I did it. I taught myself how to negotiate tricky, winding trails with sharp switchbacks, how to cross rushing streams on slippery stones, how to explore where one wishes, and find one's way back. I've gone for miles and days without meeting another soul, spent the night in mountain storms, weathered the icy wind rushing through tall pines, and faced dehydration. I sit now at my cabin in the solitudes of the Angeles Forest miles from the city, putting the finishing touches on this document. My only company is a small family of mice who seem to enjoy my cabin as much as I. I hike to this cabin on my own, as there is no vehicle access. My soul is refreshed and rejuvenated with the assurance that I, indeed, enjoy the full embrace of the world and can share it with other souls seeking personal realization - that I can lead the life I choose and do exactly as I wish - except catch these damn mice, it would seem. E. I wrote this document with the hope of explaining how we can help our blind children and students embrace our world. I write this from my perspective as a blind person who has found this embrace, of an instructor who has helped others to find it, and as a psychologist who understands how and why it all happened. II. SELF EVALUATION: This is just a little test to help us become aware of our own attitudes about our children and students. A. In what areas do we hold different expectations for our children and students than we would the sighted? If there are sighted siblings, how do we hold different expectations between the sighted and the blind one's? B. In what ways do our blind children and students depend on others to enable their performance? Do they depend more than the sighted? How might their performance remain stable or improve without depending on others? C. In what respects do our children and students not have equal access to educational resources? Remember, touch is more equivalent to seeing written material than hearing. In what ways could Braille be more accessible in the classroom? D. What is our children's' and students' level of performance relative to their sighted peers? If it is reduced, why? What would allow their level of performance to increase? E. Do our children and students have conventional social interactions with their sighted peers? If not, why not? What are the primary barriers, and how might they be addressed? F. How long does it take our children and students to execute their educational and household tasks? Is this length of time reasonable? What steps might be taken to quicken this process if necessary? G. Do our children or students access the community and participate in community functions as well as their sighted peers? Do they participate in extra curricular activities - scouts, league sports, after-school programming, clubs? Do they go to their friends houses or to the store or travel to school on their own? Can they meet their friends at a mutual location? Can they order their own food? III. THE POWER OF EXPECTATION A. The Expectancy Effect: Psychologists have documented a phenomenon called the "expectancy effect." It simply means that people, especially children, tend to respond to what is expected of them. Before you say "bosh," listen to some facts. 1. Prejudice: You may have heard of the study done years ago by a first grade teacher who set out to expose the damages of prejudice. She told all the brown eyed kids in her class that important people had found out that blue eyed people are smarter and that brown eyed people just take longer to catch on. Within a single day, performance of brown eyed kids fell, fights broke out on the playground, and friendships were shattered. The next day, the teacher announced that these important people had made a mistake, and new studies actually showed that brown eyed people were smarter. Immediately, everything reversed - with the brown eyed kids coming out ahead. Though this teacher was fired from her position, her findings have been studied and replicated by "important people" ever since. 2. Self Fulfilling Prophecy: Another study presented a first grade teacher with a class whom she was told comprised both gifted and slow kids. In reality, these kids were selected at random without any knowledge of mental ability. However, within a few months, their school performance strongly reflected the artificial label they'd been given. Those labeled "slow" demonstrated more trouble learning and showed lower performance. Those labeled "gifted" were doing very well. 3. Learned Helplessness: In a very famous study called the "Stanford prison experiment," a make-shift prison was set-up in the basement of one of the buildings. The study proposed to examine how people take on social roles assigned to them. Ten male students were randomly selected to be "guards," and ten randomly selected to be "prisoners." It was made clear to all the students that they could leave the experiment at any time. The experiment was slated to last one week, but within 3 days those in the role of guard became gruff, controlling, and even abusive, while those in the role of prisoner became passive and submissive. Only a few prisoners attempted to leave the experiment early. But, when the head researcher, himself unwittingly drawn into the role of "warden," told them that they had to wait out the week, they submitted to this demand, even though no physical force was used to hold them. A colleague of the head researcher admonished him sharply to terminate the experience immediately when she saw the strength of the role force. 4. If a few simple studies can show the marked effects of a little expectation on a few school kids, imagine what a lifetime met with a world full of negativity about blindness can do to a blind child. It should be no surprise that nearly 90% of blind kids have become dependent and unemployed. The role of "blind man or woman" is a very powerful role imposing helplessness, dependency, and vulnerability upon the blind by expectation of the sighted. But, that still leaves at least 10% who find successful, enriched, fulfilled lives despite these pressures. They learn to fight. So, now imagine the power that positive expectation from those nearest the child can likewise have. We, parents and professionals, can and must successfully bolster the child's ability to say "no" to this negativity, to help the child to rise above all that. B. Some questions to ask ourselves: 1. What do we want our children and students to become? What does it take for a sighted person to get there? Now, what does it take for a blind person to get there? 2. What are our greatest fears for our children and students? What will it take to get past these fears? C. Though we are all different at birth, the biggest impact on who we become does not arise from chance or providence, but instead from how we are raised by our families and by society. In large part, we become who we are expected to become. Therefore, we must hold the highest and broadest expectations for our children and act on their behalf according to those expectations. This is most important for handicapped kids, because the negative forces in society that will encourage them to fail or stagnate are very strong. D. As good parents and professionals, we want our children and students to achieve a quality of life comparable to that of those around them. Whether or not we sincerely believe deep down that this is possible, this is still what we want. For some children and students, this goal is perhaps easier to achieve than for others, but the power of belief in possibilities applies likewise to all, no matter how disabled or challenged. E. In order for someone to achieve a quality of life similar to others, one must be able to do things similar to what others do by whatever means. When one's capacity to do things is diminished, then quality of life may suffer. F. Impossibility is in the eye of the narrow-minded. In truth, blind individuals have achieved and will yet achieve this quality of life, and it's only as difficult as society makes it. All it takes is for us to treat them as we treat everyone else - to provide them with the same opportunities and tools for physical and mental growth as for everyone else. We need to hold the same expectations for them as for anyone and hold them to the same standards. When this is done, like magic, we unleash all the power one needs to achieve the highest goals of one's desire. It is the miracle of human endeavor that brings about the capacity to achieve the highest goals in the face of the greatest impositions. The key is knowing and utilizing all options and resources. 1. I have personally seen at least five children learn to walk after their parents were informed that this might be impossible. Fortunately, these children didn't understand what the doctors had said and did what children naturally do. They rose to the expectations set for them. 2. Currently, blind individuals hold good jobs in just about every imaginable career including top executives and scientists, doctors, lawyers, writers, world class performers and athletes, artists of every genre, educators, computer programmers and technicians, carpenters, clerks, secretaries, etc. In most cases, these individuals went against the general consensus that they could not do what they set out to do. The human race has evolved by proving the narrow-minded wrong. 3. Until 1996, Orientation and Mobility certification was withheld from totally blind individuals because vision was believed necessary to do the job. The trouble was simply that the mobility profession had spent more time scrutinizing the problems than seeking solutions. It's a common error, one which the profession now recognizes. G. How do we know what potentials can be reached, unless we strive with every expectation and opportunity to reach for them? We need only recognize that blind people need one simple thing to equalize their opportunities for success - access to the same information and resources that the sighted enjoy. This includes school and work materials such as books, handouts, computer programs, and forms as well as community resources such as recreational, leisure, and enrichment programs. Isn't vision really nothing more than a tool for acquiring information? Few would argue that the ability to acquire information and utilize community resources is the foundation of power and success in this world. If so, then lack of vision need not impair success IF other supplementary tools and means are implemented to maintain access to critical information and resources. It is without these other tools and means that the visually impaired come to face a dreamless, desolate, unfulfilling existence of isolation and dependence. This is, indeed, a stark reality for most blind people who do not find proper integration with their school, work, and community, but this need not happen to anyone. The blind who learn to integrate generally lead fulfilling, productive, and autonomous lives - each according to his or her unique talents and skills. They hold good jobs in just about every type of career. These are not just gifted, special individuals touched by providence; they're everyday people who were encouraged by the same expectations and allowed the same opportunities as everyone else. Because of this, they lead lives like everyone else. It's very simple. When the same chances to succeed are provided to all, than all can rise to their greatest potential. But, for this to happen, the seeds of success must be planted early and nurtured to personal accomplishment. IV. THE VISUAL SUPREMACY FALLACY - (that sight is the only way or the best way to do nearly everything.) A. This falsehood arises primarily from those sighted people who use and need their sight for nearly everything. It happens because sight has become the normal way of handling things, and the world has catered to this approach - raising it to a dominant status. This isn't right or wrong; it just simply is. B. Such a philosophy is understandable but may be considered "sightedist," analogous to racist or sexist philosophies. Many blind people call sighted people who hold this philosophy "sightlings." I mention this just to point out some of the ways in which blind people have been subtly and not so subtly de-valued. By the way, the term "sightling" is not a term that I support any more than I would support the term "blindling." (There are languages that refer to blind people in a manner that may be translated as "blindling." In these languages, the word "blind" can be used as a noun or adjective.) C. In humans the eyes occupy less than 0.001% of the body's weight. The sense of sight accounts for only 1/5 of our sensory input, and the visual cortex comprises less than 15% of the human brain. Whether one is blind or sighted need only constitute a tiny part of who we are. D. The sighted cannot readily understand the blindness experience. Blindness is not a matter of being in the dark; it's a matter of adapting to the dark. Those are two very different things. Being in the dark is scary, difficult, and dangerous for everyone. But, adapting to it means becoming able to exist in it with satisfaction and productivity. That is what being blind is about. The typical blindfold experience fails at this, and thus may do more harm than good. 1. A blindfolded sighted person does not experience anything resembling a blind person's experience. With a blindfold, sighted people are usually incapacitated and very vulnerable, and they generally want and need help with just about everything. And, let's not forget, the blindfolded sighted person engages in the activity with the convenient assurance of being able to remove the blindfold whenever the experience becomes too troublesome or traumatic. 2. In my experience, sighted people emerging from a blindfold experience too often exhibit reinforcement of their own initial myths and fears about blindness. Comments such as "Oh, I never thought it would be that hard," or "I understand now how scary it must be," or "Now I understand my child's struggles to eat." To me, this phenomenon runs very counter productive to what we should really be after when trying to "enlighten" others about blindness. You rarely hear comments like "Oh, that wasn't so bad," or "Well, you just have to approach life a little differently," or "I see how blind people can do just fine." Yet, isn't that what we should want people to understand? The only exception to this in my experience was a sighted boy of 11 who insisted on executing a steep, upward hike of about 3 miles entirely under blindfold. At first, it was slow going and difficult, but he kept saying, "Oh, I can use my cane like this," or "You just have to feel around more," or "I can follow those cliffs 'cause I can hear them!" By the end of the hike, his pace and poise had improved nearly to normal, and he raved about the experience. His final comments were, "Being blind wouldn't be so hard," and "You just get used to it." The difference is that the blindfold experience did not focus on the experience of blindness, but rather on the process of adapting to it. Of course, he knew he could pull off the blindfold any time, and we invited him to do so several times. But, he maintained the strength of character and perseverance to stay in the dark under very challenging conditions. I've seen adults rip off their blindfolds after 3 minutes of not being unable to manage a simple plate of food. Such "easy outs" just bastardize the whole attempt to understanding the blindness experience. Later, I discuss an alternative approach. 3. The sighted tend to project their own helplessness, neediness, and vulnerability in the dark erroneously on to the blind, and the blind, like everyone else, tend to succumb to these negative views. But the blind need not uphold these assumptions. Effective blind functioning is the result of years of psychological and physiological adaptation and optimization that does not happen to a sighted person with just a few minutes under a blindfold. Consequently, the sighted person undergoing such an experience is left with a negatively skewed perception of blindness. 4. It can be argued that the blind don't even hear or feel things the same way sighted people do because although their ears and skin are exactly the same as those of sighted people, their mind and brain have rewired themselves to draw every nuance from the auditory and tactile environment to furnish them with some of the information that sighted people access visually. E. With additional disabilities, the same basic idea applies. This world primarily values a specific combination of perceptual abilities and specific styles of intelligence. Yet: 1. Helen Keller, both blind and deaf, has risen as one of the greatest historical figures IN THE WORLD. 2. I had a totally blind student, with a prosthetic leg from the knee down, who swims competitively, bicycles, runs, hikes, ski's, repels, and walks faster than I do. 3. We have also seen autistic people rise to the public eye. Temple Gramdin is an autistic woman who suffers from all of the common characteristics of autism, but she has learned to cope with us non- autistics, and she has written and spoken publicly with great insight about her situation. V. THE VALUE OF DEEP ATTENTION A. People can see it with their eyes and hear it with their ears but never grasp it with their minds. If the mind does not grasp, of what use is what we see or hear? Darkness constitutes one of the greatest fears and deepest mysteries of the sighted experience. Blindness is darkness personified, and all of us must deal with that. When we fear and lack understanding of something, can we deal with that something effectively? If our perspective is stuck or frozen, we cannot learn. We learn only when we allow our perspectives to shift. If we can communicate deeply with each other so that our minds can grasp what we are talking about, some of the fear and mystery will lift, and we can approach darkness and blindness with effective, productive ability. I learned something very wise from Dr. Ken Moses - a renowned psychologist in the area of grieving. "When you don't understand what is going on, it is not a time to act, it is a time to observe." 1. A friend's Dad under-valued me for many years. He would make comments out-of-hand that dismissed my viability as a whole person. Once, when I told him that I and his son had successfully fixed his stereo he responded: "Yeah, John's really good at that stuff." Once, he walked into a discussion that I, my friend, and another were having about Hitler, and he commented: "Danny; aren't you getting bored around all this intellectual stuff about politics?" He then watched me ride his bike around the neighborhood in preparation for a video segment being produced about echolocation. A week later, he asked if I could find his son's room okay despite the fact that I had visited the house regularly for 15 years. Now that I have co-founded and run a company to spread an understanding of blindness and have been invited to conduct many workshops and trainings throughout the world about blindness, he still insists that this company will not succeed. Isn't that silly? It's also tragic when such a closed, fixed perspective is applied to growing children or client rehab, because it poisons the growth process. If I had been raised by this man under such a dismal, frozen perspective, I would not be writing this "intellectual" piece of work. I would not have presented all over the world on human potential, and I would not have co-founded WORLD ACCESS FOR THE BLIND. I would probably be stuck in my bedroom listening to the radio, waiting and hoping for something interesting to happen. 2. The producer of another video segment continued being overly apprehensive and protective of my safety even though he'd watched me ride for hours. After I had cut a bagel with my pocket knife and left it open on his desk thinking that I might use it to spread the creamed cheese, he reached over, closed the knife, and handed it to me saying: "I just don't want you to cut yourself on this." Now, one could think of this as being kind and considerate, but one could also think of it as a blatant intrusion into one's personal space, let alone an insult to one's self-respect. 3. Once, a V.H. instructor stated a belief at an I.E.P. that her student may have some light perception. She gave examples of moving around objects, tracking stimuli, and being generally extremely mobile. While I agreed that he may have some light perception, I also asserted that he might be able to accomplish all of those tasks with the use of good nonvisual perceptual skills. The aide insisted further that he could follow her even when she made no noise. I explained that it is almost impossible for a person to move without making noise - especially in grass. I asked her to hold up her hand, and using human sonar only, I reached out and touched it. I repeated this demonstration several times. Even after this demonstration, the staff remained doubtful that the student could exhibit such refined functioning without light perception. B. It will be helpful for those who are sighted to put their vision aside in order to understand the dark. 1. I don't mean a few minutes under a blindfold. That won't help. Blindfolding sighted people often substantiates fears and misunderstandings and deepens negative myths as I have already explained. 2. The sighted cannot develop an understanding of the blind experience as long as all of their visual ways of thinking stand in the way. A newspaper reporter once put it this way: "It's a handicap of the sighted not to be able to think beyond their own vision." Blindness is not just darkness or not seeing, it is a different way of thinking - of perceiving the world. a. A parent once asked me after one of my presentations on broadening perspectives how a blind person can use the sun for orientation. I asked him, "When the sun was very strong today, what did everyone complain about?" "It was too bright," he said. "Anything else," I asked. He was stumped. "When the sun is very strong," I continued, "people usually complain about the heat." I explained that most of the sun's energy doesn't even radiate as light. His concentration on the sun's light disrupted his awareness of its warmth, and of how that warmth can be used to track the sun's movement through the sky. b. A commonly asked question is: "How does a blind person know when a car is coming?" Do sighted people not hear the noises that cars make? 3. The sighted have often overwhelmed themselves by the bulk of their own vision. Though the information that light provides to the eye is spectacular, the world is much broader and deeper than the eye alone can perceive. a. I was once interviewed by an 8th grader for a class project on dreaming. He found it very difficult to grasp how a person could dream without visual images. The interview evolved into a discussion about the variety and richness of sound in the world. When I described the surf against the shore as a wonderful symphony of sound, always changing, with every wave carrying its own unique timbre like the instruments in an orchestra, he was surprised. He had never noticed; all the waves sounded the same to him. b. One of my low vision students expressed surprise to me when I mentioned that I used the creek to help me know where I was. "How?" he asked. I explained that the creek is never the same in any two places, and its sound shifts and changes as one walks along it. One can learn to read the sounds of the creek, just as one reads the changing landscape. He was very straightforward in stating that he'd never noticed this, even though he was an avid hiker. VI. FACTORS IN SHAPING A CHILD TO GROW-UP TO EMBRACE THE WORLD - The following is not intended to be a parenting guide. I am not a parent, and I will not tell others how to parent. But I am blind and a developmental psychologist with a sound background in behavior. I understand causes and consequences and how to motivate people to become all they can. Please take the following with this understanding. If the following ten things are true, then the child will grow strong enough to earn his or her freedom in the world. Freedom is never granted to the blind child by the world; it is always earned through skill, ingenuity, and perseverance. Of course, the child's age is taken into account when considering the following things. A. The child travels most places without guidance or being told what to do or where to go. She feels comfortable traveling places by herself, even in unfamiliar areas (smaller areas for younger children). When guidance is used, it is only occasional. EVERY STEP TAKEN UNDER GUIDANCE IS AN OPPORTUNITY LOST FOR LEARNING. The child is also not confined to a stroller passed the typical age of 3 or 4. Children who can direct themselves through their environment can direct themselves through life. 1. Developmental Considerations: It is common and appropriate to walk with young children by the hand. It is a sign of affection and an opportunity for casual bonding. We must remember, though, that a sighted child can be held by the hand and still be an equal partner in the paired walking. The sighted child can still learn actively from her surroundings just by looking as she passes through them in her mother's hand. The dynamic is different with a blind child. A blind child is not simply "taken" by the hand, but is almost always lead by the hand. The blind child passes through her environment out of contact with things around her. A blind child who travels with someone by their own power is an active process in the pare, and thus learns to develop a more active power over her own life. It is, of course, very appropriate to walk with young children, blind or sighted, by the hand around traffic situations for reasons of safety. Even so, the blind child must develop her own responsible behavior around traffic. 2. Helpful Hints a. During the child's early years, spend a little time orienting her to new places like school, relative's or friends' homes or whatever. This gives the child a little head start. Then, they're on their own to get from place to place. Prodding or handing the child from place to place teaches nothing about self-sufficiency. b. When traveling in public, the child may have trouble keeping track of the people she's with. It is very helpful for one or more of the traveling companions to dangle a set of car keys or something jingly or rattly out a hip pocket, purse, or belt loop. The child may have difficulty with this at first, but will learn to focus in on the sound of those she's traveling with. This processing of "focusing in" is essential to good mobility and isn't learned at all from sighted guide. c. As the child begins traveling on her own around her neighborhood, it may help to hang some distinctive wind chimes in front of your house or apartment. This gives the child an auditory cue to make it a little easier to identify her house from others. An easily found touch symbol or object is also helpful, such as a small, distinctive wooden plaque affixed to the mail box. B. The child keeps his cane with him most of the time and uses it almost everywhere. The child thinks of his cane as a life tool - almost a part of himself. It isn't just a school thing or something his mobility teacher makes him use. Some blind people have described their cane as being "wings to freedom." Children may choose to put their cane up for play activities when it gets in the way (a holster is recommended for folding canes), but the child always returns to use it when play is over. 1. Developmental Considerations: Obviously, young children generally demonstrate immature cane skills. But, a blind child who is walking is old enough to start using his cane in functional ways and should be held responsible for doing so. 2. Helpful Hints a. The child wears a holster into which the cane can be folded and placed during activities where the cane would just get in the way. Then, the cane is always with the child and within easy reach. b. If the child fusses about using the cane or genuinely doesn't seem to understand its purpose, then the child can be made to travel without it or guidance if he chooses. How often will the child trip, stumble, or run into things before he realizes the significance of the cane in his life? The child should get the point. C. The child keeps track of her own things (shoes, clothes, toys, school supplies). To a blind child, the world can be full of man- and maid-servants who fetch and carry at the child's whim. Unless the child will have access to such help throughout her life, this state of affairs is unrealistic and should not be encouraged. besides children aren't very good at rulership. They just haven't the experience or maturity to manage it very well. Let's try to avoid the Pollyanna syndrome. The child who can manage her things properly can develop the skills vital to manage and organize her life. 1. Developmental Considerations: These are really the same for a blind child as for a sighted. A blind child who is old enough to leave her toys lying around is old enough to start keeping track of them. This process and expectation can be taught very young. Initially, you just have them keep all their toys in a toy box, but eventually, the child may have drawers, book shelves, etc. with which to organize them. 2. Helpful Hints a. It is helpful to teach the child how to place her things with a little strategy. For example, throwing or leaving her shoes in the middle of the floor will make them hard for her to find later, because she can't just "look around" for them. She should learn to put her things near permanent objects that don't move. These permanent objects serve as markers to help the blind child recall and find her things. b. If the child continually loses track of her things, making her go without them for a while is a very good way of motivating the child to develop the necessary organizational skills. Fetching and carrying for the child is not. D. The child participates equally in domestic management. The child "pulls his own weight." He helps with chores, helps bring in and put away the groceries, is considerate of others' personal space, maintains social courtesies such as give and take and has family responsibilities. Such a child learns to value himself as an equal contributor to the family. It is by how we get along in our family that we learn how to get along in the world at large. These involvements are especially important for blind children, because blind children tend to remain focused on themselves. Responsibilities to others draws the blind child out of himself to engage others productively. 1. Developmental Considerations: Again, these are the same for a blind child as for a sighted. If 6-year-old sighted sister Susie is expected to carry her dishes to the sink and rinse them off, then blind brother Bobby should do the same when he's her age. The only difference is that a blind child doesn't learn to do things by watching others do them. He only learns by doing them himself. This is all the more reason he must be required to do things for himself. It may take a little longer to learn and demand more patience at first on the part of caregivers, but this patience soon pays off. 2. Helpful Hints: Remember that most aspects of house keeping are responsive to touch and hearing, not just vision. For example, when vacuuming, the vacuum makes a rasping noise as it sucks up dirt, and one can feel dirt on carpet with bare feet. The same is true for mopping, sweeping, or racking. One can also simply keep track of where one vacuumed, mopped, swept, or racked, but this may yield inconsistent results. Dirty dishes have a slightly slimy feel, whereas clean dishes feel smooth and slick. The film that causes dishes to feel slimy can result from residual grease or poor rinsing; it is often invisible, so touch is required anyway to ensure a clean dishes. The results of dusting or polishing furniture are gauged by the way the rag glides across the surface. Mowing the lawn can be done by setting a stake at its center and mowing around it on a rope in expanding circles. Then, one can touch up the corners later. Even if these chores do not prove suitable, just about anyone can help set the table, carry in the groceries, weed the yard, take out the trash, etc. E. The child participates in the community. The child has friends around her age who are sighted, and she participates more or less freely in their activities. She is appreciated and respected in social circles, even if she may not be very social by nature. She is thought of and approached as a contributor, not just "the one who needs help all the time." 1. Developmental Considerations: Social skills and engagement are one area often delayed somewhat by blindness by about a year or two. It may, indeed, often be appropriate to hold blind children back a year at kindergarten and preschool if for social reasons alone. It may at times be appropriate for blind children to have friends a year or two younger than they are. However, blind children do go through a course of social development as sighted children do. They play along side each other before playing with each other and join cub scouts before boy scouts. 2. Helpful Hints a. It helps if the child is pleasant to be around. If the child is bossy or self-centered, others will avoid her for reasons of personality, not blindness. It's not uncommon for blind children to be rather self-centered much longer than sighted kids, because they don't to the visual stimulation of others to pull them out of themselves. Over indulgence just exacerbates the problem. b. Games can be adapted by causing targets to make sound or brightened with high contrast tape. A simple plastic bag can enable a blind child to hear where a ball is and engage in most ball sports casually. Some have become quite good. c. Doing a brief in-service in the child's classroom during the first couple days or an assembly at the school can help put other kids and teachers at ease around the child. Though a brief mention of courtesy isn't a bad idea, these in-services should not focus on "all the things you should do to help the blind kid," nor should it focus on safety issues. This just sets the child further apart from others as a needy recipient. In-services should focus on the successes of the child and the strategies she uses to be successful. F. The child engages comfortably in all activities of daily living with little help beyond what would be age appropriate (dressing, feeding, toileting, grooming). A child remains a baby for as long as he is babied. The child who grows up can meet the world with the freedoms usually afforded adults. 1. Developmental Considerations: These really are the same as for sighted kids. Again, blind children don't learn by watching; they learn by doing. 2. Helpful hints a. The more the child does it, the easier it gets. The child will never get very good if he doesn't do it very often. b. Use flat-handled silverware. Round handles make it difficult to tell whether the fork or spoon is facing up. c. The child should always use both hands when engaging in any task. One hand is usually used as a reference while the other is more active. When cutting food, for example, one hand should rest on the edge of the plate while the other does the cutting. d. Clothing should be matched by something sewn into the clothing like buttons or something. Color schemes should be simple. The child shouldn't be made to depend on others to lay out his clothes. e. Shoe tying often takes quite long to learn. Just keep at it. The child will get it eventually. Buckles and velcro can be practical, but they just postpone the inevitable. Start by teaching and requiring the child to just do the first step (the cross over). Then, once that's mastered, the first and second (over/under). Then, finally, the loops, and pull. It'll come with patience. Try not to put the child in a position where his friends are tying his shoes for him, though. Double knots can be good. G. The child is disciplined in the same manner and with the same expectations as other children her age. The child is not burdened by others with the idea that she should be given a break, because life is so hard or unfair. In fact life is hard and unfair, and life will not give the child a special break because of blindness. The world does not make special allowances. Life does not favor the blind in any way. Therefore, it is to the child's advantage to grow up knowing how to meet the world face to face on its terms with grace and dignity, with or without eyes. 1. Developmental Considerations: Blind children may take a little longer to learn appropriate behaviors, because so much modeling is learned by watching others visually. Again, this is all the more reason for discipline to be swift, decisive, and consistent. The blind child may rely even more on good, strong discipline than her sighted peers. Expectations should be made clear to the blind child just as to the sighted, and consequences should be just as forth-coming. 2. Helpful Hints a. Again, this isn't parenting, but just shaping behavior. The quickest way to shape behavior is direct consequence. For example, if the child can't keep her room clean, then she loses access to her room. If she can't keep track of her things, then she can't use them. If a child refuses to make or help make her lunch, then she doesn't get lunch. If she wants to have a tantrum over it, then she can have it in a place where she doesn't bother others until she's done. b. In general, discipline styles need be no different with a blind kid, except perhaps a little more stringent. Again, they don't have vision to learn from, so they may be more reliant on consequence. H. The child gets hurt from time to time. Children get hurt. That's part of being a child, and it's part of growing up strong. Blind kids need to grow up stronger than most. Bumps and bruises heal, but the damage caused by never being permitted to receive bumps and bruises may never heal. Life is the best teacher. Being burned by a flame is much more effective in teaching us about fire than being repeatedly told, "don't go near that; it's hot." Pain is part of the price for freedom. 1. Developmental Considerations: It is generally appropriate to shelter a child from hurts for about the first year or two of life. This is a time of life when the child should develop a trust in the goodness and rewards of life. After this, though, the child learns better through direct encounters with life's real consequences within reason. We don't let the child run into the street without warning. Neither do we forbid him from playing ball 'cause he might get hit in the head. What kid hasn't? 2. Helpful Hints: Try to remember that all active kids get hurt. Just because a kid is blind doesn't make his hurts any worse. He isn't any more fragile or delicate. If anything, he needs to grow more resistant to the many little pains that life can impose. I. The child is allowed to grow up. Children are cute and cuddly for a long time. It's easy for us to imagine them as babies well into their growing years. It's even possible for us to keep our children babies for as long as we want. But in my professional experience, parents find nothing worse than a teenaged baby. This world is designed by adults, for adults. Babies can't operate in the adult world very well. So, it is in the child's best interest to be allowed and encouraged to grow up. Blind children are especially vulnerable to the "prolonged baby syndrome," because their lack in vision puts them at disadvantages when interacting with a society that favors vision, and because they are perceived and treated as more needy and helpless. It is, therefore, even more important that a sound growth process is maintained for the child. 1. Developmental Considerations: Children are babies until they are about 2, toddlers until about 5, little boys and girls until they're about 9, big boys and girls until about 13, and young men and women until 18. The child needs to benefit from opportunities to grow into each phase; it doesn't necessarily happen automatically. Blind kids may need stronger opportunities, because society tends to exert negative pressure against them, to thwart the growth process. Lack of vision can also limit the ability to perceive behaviors in others that reflect mature development. There's nothing about blindness that should stunt this process if the child undergoes all the normal experiences of growth and peer interaction. 2. Helpful Hints a. While enjoying your child's child-likeness, get into the habit of visualizing your child as a capable big person. If you can't see your diapered baby as a distinguished professional in a suite and tie, try at least seeing him as a strong, energetic young boy in shorts and sneakers chasing a soccer ball. Take it one step at a time. b. While it is common and appropriate for parents to see their kids as their baby, it is essential that we also rejoice in their growth. The tall man striding proudly in cap and gown to receive his degree easily becomes transformed in our minds as the little boy scampering with careless abandon in shorts and tennies after a ball. Still, do we not share in our son's adult accomplishments? We should remember always to keep an eye on our child's next step, moving from babyhood to childhood to adolescence (God help us), and finally to adulthood. Skipping any of these steps (babyhood to adolescence, or whatever), is almost impossible. Let's see if we can avoid that struggle for our children. J. The child engages primarily in active or interactive rather than passive activities. The idea that active engagement is so critical to blind children may seem counter intuitive. As stated earlier, blind kids can't learn much from passive observation the way sighted kids can. Blind kids really need to be "in the thick of it" to learn and grow. Think of the 3 blind men describing the elephant. One touching its trunk thinks it's like a great serpent. Another touching its leg describes it as a great tree. The one touching it's tail says something else. Its the one who gets up on the thing and rides it, cares for it, feeds it, and interacts with it who really knows what it is. It may be true that not everyone has an active personality. There are lots of sighted people around who are couch potatoes and blind people, too. The problem is, a sighted couch potato may learn enough through passive observation of the world to be able to get themselves to the store to buy potato chips so they have something to munch on as they veg all day. A blind couch potato will almost certainly not be able to do so. 1. Developmental Considerations: As a child develops and interacts more with the world, she learns to put more and more of the pieces together. A young child must explore objects actively and thoroughly, sometimes repetitively, before she understands them. This should be encouraged all the time. As blind children get older, they learn to understand objects more quickly with less contact. An experienced blind person, one whose actively engaged in the world, may touch an elephant's trunk for the first time and says: "Hmm. Very powerful. It snuffles and is connected to something very large. I feel the earth shudder as it moves. I sense its great bulk, like an edifice looming near me. I hear the swish of what must be its great tail, high up, and masked by its great size." 2. Helpful Hints: Video games are becoming a serious scourge for blind children. In general, blind children can only participate passively by watching others play. While this may provide opportunities for some positive social interaction, it reinforces dependence on others and provides no active stimulation. If the blind child must have a Gameboy or something, try placing time limits on the activity, such as "no more than an hour a day." K. In general kids grow up to become normal by growing up normally. Parents who have older sighted children may use those children as a loose model to gage the blind child's development and how to treat and raise him. Those for whom the blind child is the first may look to other friends' children or your own up-bringing. This isn't to say there may not be differences in how blind kids develop. There are, but the overall expectations and standards need to be the same, or the child may not grow prepared to meet the world face on. VII. WE MUST CONCENTRATE ON THE PRESENT AND FUTURE, NOT THE PAST [I wrote this section when I anticipated a particular family attending a certain presentation. Their son was 7 and had no involvements other than blindness, and these parents were still spoon feeding him, still carrying him into the classroom, still babying him in every way and lavishing him with praise for the simplest accomplishments. When I showed them our video, his mom spoke out in front of him saying "oh, he'll never be able to do that." When the boy turned 12, he was more of a baby than his 3-year-old brother and wouldn't walk anywhere without an aide, even onto the playground. His parents insisted to his instructors that he wouldn't need bus lessons, because he'll never have to use the bus. I was hoping to stir them to think differently by the following discussion, but they didn't show up.] A. We're going to talk about what we as parents and professionals have done right and wrong regarding our children and students. By "right," I mean things that further our children's and students' ability to function successfully as blind people. By "wrong," I'm talking about the things we do that interfere with our blind children's and students' ability to function successfully, and we all do both right and wrong things. B. Some of you may not want to hear or take in what we'll discuss. Maybe some have become comfortable and resigned to ideas and presumptions about blindness - about what your kids can and can't, will and will not be able to do. Or, perhaps some have come to enjoy their children's dependence on them. Sometimes, our children seem to grow up too fast. It is possible to slow that process, especially for blind kids who are particularly vulnerable to society's prejudices. It may be convenient and safe to hem them into a neat little box where we can keep a close eye on them. I don't say these things to criticize or belittle; I suggest them to stir us to look deep into ourselves to learn who we are and know our motives and expectations. What we'll discuss about blindness can, in no way, harm any of us. It may hurt, but pain is not our enemy. Harm is our enemy, and if we open our minds and hearts to other avenues and ways of thinking and feeling, we may avoid the harm that has hitherto needlessly plagued the vast majority of the blind. C. We may touch on some mutually painful chords. We can all do better than what we're doing. The important thing is to put behind us what we've done, because that cannot be changed, and to look ahead to what can be changed. D. I cannot speak as a parent, but I can speak as a product of this society and as one who has observed many products arise from many different backgrounds both empowering and debilitating. E. I do not judge, because I have made my share of mistakes - some worse than any of you will probably ever make. 1. My closest experience with parenting was my interaction with Dog Guides, of which I had two. I ruined the first one. Her name was Whiska, and I loved her with an intensity that completely distorted my better judgment. I spoiled her rotten and did everything for her. I took over her job - causing her to lose her skills and abilities which she, like all of us, needed to practice if she was to retain and refine them. Everyone tried to tell me what I was doing, but it wasn't for 4 years into our relationship that I began to listen and try to change. I couldn't turn it around in time. In another 2 years her lack of refined abilities killed her. She forgot to watch for traffic, because I'd always done that for her. You can't exactly say that I improved her quality of life by doing all I did for her. I did her no favors. Sometimes, we can "love" our loved ones to death or lifelong harm - prison, institutions, dependency, isolation, or worse. 2. Some time afterward, I took a dog from the street, named him Zion, and raised him to be a very effective Dog Guide. I did this by forcing him always to use his skills, rather than imposing my skills on him. He is alive and well today, because I taught him to be responsible for keeping track of his own surroundings. 3. I couldn't undo what I'd done to Whiska, but I was able to take that experience and give another dog a good and productive life. That is the finest gift we can give, and I thankfully pass this lesson on to all who can benefit from it. VIII. BROADENING PERSPECTIVES A. In this section, we're going to see that blindness really should not be considered so much a disability but rather a condition or style of living. Blindness has its challenges and drawbacks, but it is only by recognizing that they must still move forward to the same ends as everyone else that we can make this happen. We must forget about the "can'ts" and make the "cans" our focus. B. Advantages of blindness. Who'd have thought that there might actually be advantages to being blind. Sure, the challenges, inconveniences, and ignominies are many, but we can rest an advantage or two from the experience. 1. Mastering fear of the dark means mastering ourselves and the world. Do we realize just how much of our time and energy is spent being afraid of the unknown? The blind live their lives with the unknown before them. They have to gasp and grapple the unknown at every step and turn, and they have to do it with poise and grace. The lessons and skills learned from doing so are incalculable. 2. Being blind, you form your own self and your own path. Blindness almost necessitates taking a non-conventional approach to life, because the conventions don't recognize blindness. You learn to live outside the conventions, while remaining respectful of them. They may not be driven by the same forces to look and act like everyone else, because these do not serve. The opportunity is wide open to be themselves, without the same pressures of conformity. 3. Advantage of social familiarity. We often talk about how disadvantaged the blind are in social situations, but really, blind people almost always have the advantage. The blind, living among the sighted, come to understand the sighted very well. Yet the sighted, having almost no experience with the blind, understand the blind hardly at all. THEREFORE, when the blind encounter the sighted, the blind hold an advantage of familiarity and can use that advantage as necessary. The blind who understand this become powerful in just about any social context. C. It's easy to screw up a blind kid. As of 1994-95, about 90% of individuals blind from early childhood and about 75% blind later in life were not gainfully employed. This includes the low vision population. 1. I had a client who lived with his parents all his life. His life was managed for him. Everything was done for him, and all decisions were made for him. Evidently, his parents believed that taking care of him was the way to give him the best quality of life. Then, they died. He now lives on a budget of $800 a month from a trust fund that his parents entrusted to family and friends as conservators. He exercises no capacity to make decisions for himself. He has little control over his life - where he lives, his money, nothing. He has no wife or children and no immediate family to "care" for him. Is this the quality of life that any of us would want for ourselves or our children? His parents and others evidently cared for him and nurtured him straight into a life- long prison of poverty and self-debasement. Is it because of blindness that so many blind people don't lead rich and fulfilling lives? 2. Some standardized career testing of visually impaired youth at the Braille Institute is showing some very discouraging results. Most of these kids are scoring years below the average in career and vocational readiness. Why? D. The truth is that blind people hold just about every imaginable job from clerical, to electrical and mechanical, to professional, to political. The recent commissioner of Rehab Services for the entire country is totally blind from age 17. As long as there are blind people working in virtually every type of vocation, then blindness cannot be implicated as the cause of such catastrophic levels of unemployment. What is it then? E. Is vision a necessary prerequisite for survival in modern human society? Would it be possible for a modern society to exist made up entirely of blind humans? What would be the differences and similarities? F. There are many species of bats, birds, dolphins, and whales who have poor vision or who spend much time in the dark and who carry out all the major functions of life that sighted animals do. They range, hunt, and avoid capture in this "survival of the fittest" world. They keep house and raise families, all without the benefit of vision in a most unforgiving world. G. What is "disability?" 1. Definitions and considerations: a. In educational terms the word "impairment" refers to the malfunctioning or absence of a part of the body. The body or mind is "impaired" by something that is physically gone or damaged. The definition of "impairment" says nothing about how well or poorly the body functions in relation to the impairment; it talks only about something being gone or damaged. b. The word "disability" refers to a lack of ability to perform certain functions, usually, but not necessarily, as the result of an impairment. A person is seen as unable to do some things or limited in how well they do certain things. c. The word "handicapped" refers to difficulties in functional performance resulting from barriers or impediments that are imposed by forces external to the individual. For example, a very short person might find themselves "handicapped" in a country of very tall people, because everything would be designed for tall people such as closets and kitchen cupboards, automobiles, merchandise displays, pay phones, etc. While traveling on the train with a friend who is 5 feet tall, I had to lift his luggage to the luggage rack and take it down. d. A colleague, a nationally renowned Occupational Therapist, had a teenaged relative who recently tried to kill herself. She had no diagnosed physical impairments and was extremely intelligent. Yet, she was somehow unable to cope with her life. This colleague argued that this individual was more "disabled" than someone with a physical impairment who was able to cope with life. She asked, "If someone with impairments can lead a fully productive and enriched life while someone with no impairments can't, what does disability really mean?" e. After long discussion, we decided that disability could be defined as: "A lack of capacity to function in life due to diminished access to physical, psychological, and/or social resources." This defines disability, not strictly in terms of individual impairment, but rather one's relationship to oneself and one's environment. If I, for example, had access to the financial resources to pay for transportation to anywhere and at any time that I desired, my inability to drive due to my lack of access to visual references would hardly "disable" me. In other words, disability results from a poor relationship between the individual and the physical world, the individual and society, and/or the individual and oneself. In the case of the young girl without impairments who tried to kill herself, her physical relationship to the world was probably okay, but her ability to manage her internal, psychological resources and, perhaps, her social surroundings, was lacking to the point of disabling her most severely. 2. Few would argue that a blind person's lack of vision can negatively affect his relationship to the world. Certainly, lack of vision can limit access to information in the environment that can affect the quality of a person's life. Any sighted person who puts on a blindfold finds this out immediately. However, the functioning of a blindfolded individual bares little relationship or resemblance to the functioning of a blind individual who has fully adapted to their situation. There are many aspects of life that can be enhanced to compensate for the difficulties that might result from a lack of visual access to information. These include improved access to internal and external resources. Improved access to these resources draws the critical distinction between a real blind person and someone masquerading temporarily as a blind person. It should be noted, however, that these enhancements do NOT happen automatically, but only through practice, experience, and the will to thrive. a. Access to Internal Resources: There are two types of internal resources to which access can be improved - psychological and physiological. To some extent, these two are interrelated. (1) Psychological: "What doesn't kill us makes us stronger." When the world tries to withhold things from our reach, we must decide whether to go without, or reach out further for what we want or need. Our psychological nature is partly responsible for how effectively we can obtain or achieve what we want when confronted by barriers. The tougher the goal, the more we must exercise creativity, determination, adaptability, and self-discipline from a position of greater strength and assurance to get what we want. These are all malleable qualities over which we can have control. If you want something (for instance, your own house), and obstacles stand between you and that something (for instance, you can't drive, and there are no houses for sale conveniently near work or stores), what do you do? There are two primary reactions - either do not achieve that something (don't buy a house), or achieve that something (buy a house and work out the necessary logistics). In the face of a major barrier, one may re- evaluate how important the objective is to them, and decide either that it isn't worth the trouble or that a smaller, more manageable objective might be more appropriate. For example, one might decide that a town home or condo would suffice. Or, one might just give it up altogether and rent indefinitely. If one decides that they will have the house of their dreams no matter what, then one may choose to move heaven and earth to get it and keep it. One might investigate ride shares or hire a driver to make necessary commutes and trips. One may petition the city for improved public transportation to that area. The more we realize that each of us is every bit as important as everyone else and that our needs and aspirations are every bit as viable as those of others, the stronger is our ability to gain what we want no matter the obstacle. (2) Physiological: It is often said that when a sense is missing, our other senses become stronger to compensate. There is actually some truth to this. We must remember that the brain seeks and craves information and will exercise all manner of ingenuity to gain information. When we really wish to achieve or maintain a certain quality of life, then anyone can rise to that challenge. When any part of our mind or body becomes impaired, the challenge may become somewhat greater. Yet, if our desire for achievement remains strong and is encouraged by others, and we continue to make the effort, our remaining capacities will strengthen to compensate for what is missing. Our neuro- physiology enhances itself to enable us to become stronger, faster, more perceptive and responsive to our surroundings and needs. Studies show that the brain, given the opportunity, will actually adjust itself to enable processing of more information at higher levels. For example, a blind individual may be able to hear things that others miss, simply because the auditory centers of the brain may become finely tuned through experience and long term survival. A blind individual may be able to walk across rough and broken terrain without a hitch, because practice has refined the sense of balance through touch rather than vision. One study showed that blind high schoolers exerted 25% more energy to accomplish the same athletic tasks as their sighted peers. Does this mean that the sighted can do 25% more than the blind? No. It means that in the tasks evaluated in the study, the blind had to apply 25% more physiological capacity than the sighted to achieve the same level of performance. This simply means that the blind had to compensate physiologically to be able to apply the extra energy necessary. The physiology in these blind participants must have been capable of producing 25% more energy so that the tasks could be accomplished. b. Access to external resources: External resources include the physical and the social world. When it comes to accessing these resources, there are two factors that we must consider - perception, and functioning. Perception simply refers to what we perceive. What we perceive, we perceive because our senses and brain give us awareness of natural phenomena in the physical world such as light, sound, vibration, gravity, temperature, pressure, texture, scent, taste, etc. What we are able to perceive occurs by virtue of how our senses and brain enable us to relate to the physical world. Then comes our ability to function. How our perceptions affect the way we function depends largely on how society enables us to use our senses. For example, if society did not provide artificial lighting or indoor access to daylight, how much use would the eye be to sighted people at night or indoors? Society has extended the use of eye sight by providing a comprehensive network of artificial lighting upon which all sighted people now depend very heavily. Similarly, the written word is made available by a system of printed media which favors the eye above all other senses. (1) The physical world: As mentioned earlier, there are many species of animals with poor vision studied by natural science. These creatures exist in a competitive "survival of the fittest" world right along with creatures who have full vision. Nonetheless, it can be argued that lack of vision (i.e., lack of access to light) may decrease one's ability to relate fully to the physical world. The optical properties of light allow us to perceive very small details in many objects at very great distances. Without access to light, certain information about our surroundings may be unavailable. However, there are many other ways to acquire some of this information through personal adaptation, and there are ways to seek accommodation for the lack of information. (a) Personal Adaptation: For lack of a better term, this refers to the use of tools or technology to make use of the same information without altering the way that information is presented. The individual applies specific devices or skills to use the same media that others use. For example, a blind person may use light to read a book through the use of a computer. A blind person may know if light is present and where it is by using a light probe that makes sound when it detects light. A blind person may use a cane or strong glasses to discern things about the environment that he may need to know to travel safely and effectively. Or, a blind individual may use a driver or taxi to make use of the same roadways that the sighted travel so freely. (b) Accommodation: Again, for lack of a better term, this refers to the design of the environment that specifically allows functioning of the individual. The environment accommodates sighted people quite well, because it was designed by sighted people for sighted people. When a sign is written in Braille as well as print, that sign accommodates both that sighted and the blind instead of just the sighted. When a ramp is cut into a curb, it accommodates those with wheelchairs and other ambulatory difficulties. Traffic control signals can be made to accommodate the blind by the use of audible signals. In this way the blind would have the same access to the same information as the sighted for crossing streets. (2) The social world: There are many ways in which blindness may impact a person's access to the social world among the sighted. Vision can afford access to many social cues such as body language and expression, eye contact, dress and fashion, etc. Whole communications can take place across a crowded room by recognizing a familiar person, signaling with gestures, engaging with the eyes, and so on. It has been said that upwards of 80% of communication occurs nonverbally. (I don't actually hold to this idea. This may be true for sighted people, but communication is actually very rich with many nonvisual interactions. When I give presentations and I come to this point, I go silent for a while, just moving my lips. It takes very little time before people get fidgety and frustrated, and start to lose interest. And, finally, there are the social prejudices and biases against blindness which may pose the greatest barriers to social interaction. Both physiological and psychological factors affect how these barriers to social interaction may be addressed. (a) As discussed earlier, a person's neuro-physiology may develop to heighten awareness of social cues that compensate for the lack of vision. For example, a tense expression or aggressive body stance will generally convey corresponding vocal tension or aggression to the sensitive blind observer. Likewise, a blind observer may hear a familiar voice across a crowded room and approach the individual for engagement. Many bodily expressions may be sensed by audible movements - however subtle. A gesture may be caught by the slight rustle of clothing against the body; surprise may be heard as the slight in-take or catch of the breath; etc. In fact, close attention to vocal expression can sometimes yield more information to the sensitive auditory observer than could otherwise be obtained, because people are generally more practiced at controlling their appearance than their voice. Thus, the voice can give a truer picture of a person's intentions or feelings. (b) Psychological: A blind individual must develop stronger powers of attention to maintain awareness of these subtler social cues. Also, one must develop extra assets of fortitude and social desirability to withstand and negotiate the apprehensions and prejudices that run rampant against the blind. (3) The symbolic world: The world of symbols is where our inner world meets the external world. It is the world of the picture, the sign, the written word, and the graphic user interface. It is where we express ourselves and perceive the expressions of others through a system of symbols. Symbols mark-up our environment with warnings, information, advertisements, and helpful hints. They tell us of danger, what things are, where we are and where to go for what we want, how to do things and make things, and who to see. They share thoughts and stories, heart-felt desires and matters of urgency and wonder. They help us do math and science, and look up flight information, all with the touch of a button. They show us how to use our microwave and VCR. They tell us how much and who to pay. Collectively they embody the knowledge of a culture, and allow the conveyance of the knowledge between people, cities, and nations. But these symbols, with their power and deep meaning, appeal to the eye - impinge upon the visual system. To the blind, the pages are blank, the signs say nothing, the screens and displays of wonder to the eye are but cold, featureless surfaces to the hand. There are no warnings of danger, signs for this way and that, no helpful hints or words of courtesy, no tips about how to do or where to go, no idea how much. It is a vast world of "you know, but I don't." How do the blind cope? They do it with dreams and endeavors for the world to be more welcoming, more telling. They do it with external resources finding ways to get things in Braille or large print, which is what they read. They do it with computers that talk, very expensive displays of Braille, and videos described - with scanners that read and talking signs where they can find them. They do it by labeling, marking, and guessing. They do it with internal resources of gritted teeth and furrowed brow. They do it on faith and trust in themselves and sometimes their fellow man not to lead them a-stray. It takes a strength of purpose, a lightness and fortitude of heart, and a cleverness which we owe to our children to instill in them. Without these things, the world is a vast desert of unknown and unreached possibilities. Some examples: (Note: the following are not meant to imply that my way is the only or best way, there're just my way, and they work pretty well for me.) (a) Finding a hotel room: When I stay in a hotel, I ask if the rooms are numbered in Braille. If they aren't, I pretty much have to have someone show me where it is or be guessing for a long time. Then, I complain. For the key, I have them put a piece of tape by the arrow that shows how the key is supposed to go in the door. When I insert the key, I listen very carefully for the click of the relay which tells me when the light signals for the door to be opened. (b) Finding a street: When I look for a street I've never been to, I consult an on-line mapping service which gives me approximate directions to where I want to go. When I know I'm close, I start asking around to get closer. Amid peppers of "Are you lost," and "let me take your hand," I find my way. Nowadays, one can use talking global positioning technology which speaks the streets you're on and tells you how to get where you want to go, but this technology is currently beyond my price range. (c) Paying the bills: When the bills come in the mail, I throw them away. I call each service to get the amount owed by phone. Then, I fill out my checks by hand or on a computer, print out the addresses on the envelopes, and mail them in without their self-address label. A blind person with more experience writing could do it without a computer as long as the checks had raised lines. (d) Shopping: When I go into a grocery store, I'm faced with a barrage of unnamed boxes, cans, jars, bottles, and packages of every sort. I ask a clerk to read them all and get me what I need. After a few times, I may get the hang of the store's layout so that I can grab simple items without this kind of help. Navigating the store is no problem at all for me; it's the lack of signs and labels that hampers me. This works fine until the layout or the inventory changes. (e) Money? Credit cards? ATM'S? I organize my money. I have a scanner that reads me bills I've lost track of, but I have to bring them home for that. I keep denominations that allow me to give near exact change. I've only been cheated once. I can barely make out by touch the numbers on my credit cards, so I can pretty much keep those straight. ATM'S are getting harder, now that they're all being replaced by touch screens. I'm rather reluctant to give my pin number to a perfect stranger so they can type it in for me. I haven't found a good way around that one, except to have cash or use the credit card feature. (f) Greeting cards: I open them to check if there's money, and toss anything that isn't Brailed. I figure anyone who really wants me to read it would see that it was Brailed or convey the message to me some other way. I used to try to scan them to figure out who they came from, but they're almost always hand written, and the scanner can't usually make heads or tails. (g) Forms and applications: These are the most fun. I scan these, import them to my Braille Lite as a text file, and fill them out on my Braille display. This usually changes the look and format of the application very much, and if the scanner does a poor job, I have to do some guessing about what I'm filling out. It can take me ten times longer, but it usually works. Then, I sent back the application or form with a letter explaining that this form should serve as a reasonable facsimile of the original for reasons of equal accommodation. This has worked with everyone except the state department of rehabilitation for whom I did work, and had to bill using their form. Their form was so bad, I created my own with the same fields, filled it out with all the relevant information, and sent it in. I had to convince rehab to except it. The truth is, any government agency must provide all documentation in accessible formats, so there's legal precedent on my side. If the above doesn't work, I just call the agency in question, explain my circumstances and have them fill the form out for me over the phone or make an appointment to go in and do it. Usually, people are quite amenable. One person even took the trouble to measure how far the signature line was from the bottom of the page so I got sign it when it came to me. I use laser faxes and printers whenever possible, because laser printing can be felt. (h) Operating gadgets and appliances: Nowadays, many gadgets and appliances such as microwaves, VCR'S, cell phones, answering machines, fax machines, printers, even entertainment centers are operated by digital menus and touch screens. Gone are the simpler days of dials, knobs, and buttons that went "click" when you pushed 'em. I must try each appliance to see if I can operate before I buy it. Often, even if the thing is menu or touch screen driven, I can figure out a way. There's usually a work-around which I will often set up with the salesman. For example, one VCR that I bought was programmed entirely through a menu interface from the remote control. I simply had the salesman tell me all the command sequences that I would likely use, and I wrote them down. I would always start from powering up which put me at the defaults, so I never had to guess where I was, then I just followed my own instructions which I eventually committed to memory. I got to program the thing better than many sighted people. The salesman was so impressed, he offered to drop the thing off at my place on his way home that evening to save me from having to carry it around. I took him up on his offer. Sometimes, when I come across someone's microwave, I have to spend some time to figure it out. Though the touch buttons can be tricky, there's usually some very slight depression that one can feel if one is careful. Then, I just use systematic trial and error to figure out how to get the thing to go on long enough to cook something. There's usually a logic to these things. On many appliances the on button is usually the biggest one, or the one with the biggest light indicator. With VCR'S, the operating buttons usually have little universal arrows and symbols that one can feel with care. With microwaves, the on and clear buttons are usually at the bottom of the panel, mode settings are along the top, and timing is somewhere in the middle. Some blind people are instinctively better at figuring these things out on their own than others. I had a student once who was awesome - better than I. He came from a Hispanic household where the others could scarcely read English. He was the one more often than not who figured out how to use the new thing and would show the others once he'd figured it out. There are, of course, many exceptions to all these rules, but there's a good place to start. And, it happens with increasing regularity that gadgets and appliances are just unusable. I either have to have them adapted such as by having someone put labels or tactile markers all over the thing (which is okay and recommended for children), or I move on to some other appliance that I can use with less effort. This often precludes me from getting the latest and greatest, but such is not my taste, anyway. (i. Laundry: (Should I really include this?) I used to have my wardrobe designed along two major color schemes so that everything within each color scheme matched everything else in that scheme. I had one type of button sewn into those garments that fell into one category, and another type demarking the other category, and I never crossed categories. All my socks and under garments were white, so it was easy to separate the whites for washing and bleaching; I never wore white garments to avoid showing stains and to eliminate confusion with what is or isn't white. I could have marked my whites with a especial tag. These tags are sold, but if I had a mind, I'd have just used a safety pin or staple. I only wore white socks except on formal occasions when I would only wear black, and those were a distinctly different material composition from my whites, so I never got them confused. I still fell into trouble when dressing for formal or special occasions when color coordination is more essential. For example, on many of my TV appearances, I was asked to avoid certain colors for photo reasons. This required a level of organization upon my skill; I actually needed neighbors to come and match some of my clothing. How silly! So, I bought a color detector, and everything changed. This little device tells me the color, hue, and brightness of things. With it, I can come close to matching just about anything. (It just has trouble with navy blue vs. black.) I'm told my color coordination is quite good - (not that I spend more than 30 seconds on any given day). I still have my clothes spot checked from time to time for stains and color fading, but I'm clean and well matched. A friend of mine took a simpler approach. He just wore nothing but jeans and T-shirts, and just never cared much for matching. This would be my natural bent, but I succumbed to the pressures of family and professionalism. (j) Transportation: In general, I'm able to go wherever I wish, whenever I like, sort-of. It really isn't that simple. I'm an itinerant mobility specialist with clients spread out over two very large, highly populated counties, and I travel throughout the world besides My transportation schedule between buses, trains, cabs, private drivers, and a lot of walking is insane but doable. I can even get up to the mountain to hike when I wish, and all my transportation expenses are tax deductible. In fact, I've determined that, mile per mile, I save about $200 a month by not owning and operating my own vehicle, and I get all my paperwork and writing done while traveling. At least half this document was completed while traveling. Now, that offers little comfort on those occasions when I'm stranded or dreadfully inconvenienced, which happens regularly. (Try looking on the bright side while standing for an hour in the pouring rain and icy wind late for an appointment waiting for a late bus as hundreds of people drive merely by in their warm cars.) But, I don't need to worry much about the rigors of rush hour traffic, either. Now, to give one example of how I use transportation this is how I get from my house to my cabin which is about 3 kilometers from an off-road trail head. I take access paratransit (which is like a cheap cab service for the disabled) from my house to the foot of the mountain and a cab local to that area the rest of the way to the trail head where access will not go. Then, I walk from there to the cabin. I book my return cab and access ahead of time in case I can't get a cell phone call out from the canyon, and I hike down to meet them at the appointed time. I give myself plenty of time so I don't have the fret about being on time; there's plenty for me to do in the canyon. The round trip costs me about $25, whereas the cost would be about $40 to drive it and pay for the parking permit for a night. Now, connections don't always go smoothly; sometimes I'm running to get down on time; sometimes the cab is late picking me up which can compromise my access trip home. I once stood over half-an-hour in sub-freezing temperatures after a 3-day camp-out in the rain (long story) waiting for a cab that never came. That is sometimes the price blind people pay for freedom. It must be worth it, because I keep doing it, and it usually works out for the best. (The topic of efficient transportation for the blind and other access issues is covered in much greater detail in Section 6 and APPENDIX A of another document called "When Darkness Lights the Way," also on this web site.) (k) Other blind people in my experience do things on a regular basis that I am less qualified to comment on - home improvement, landscaping, gourmet cooking, carpentry, electrical work, automotive repair, ... 3. The biggest functional difficulties imposed on the blind are rapid transportation, and access to printed or graphical material. If you were to visit a country that spoke little or no English would you be disabled? Would you be handicapped? Recall the definitions. a. Upon returning from a visit to New Zealand, I was accompanied by a very kind, well-meaning professional in the blindness field who was absolutely convinced that the problems experienced by blind people were primarily a result of blindness, and had little to do with society's approach. "If people weren't blind, they wouldn't have problems," he said. When I asked him what would happen to sighted people if all the signage disappeared from the face of the earth or suddenly became written in an indecipherable language, he dismissed my point as "immaterial." When we got to the airport, he insisted on "helping" me in. I didn't object, since this seemed common courtesy, and he should certainly be more familiar with this airport than I. But, they were renovating the departures areas, and he couldn't find the signage he was looking for to tell him where to go. He eventually had to get directions from an airport official. I politely informed him that I'd have done no worse than he under that circumstance. b. Just recently, I was returning from Canada, and the gentleman I was with offered to assist me in filling out my custom's claims form - it not being available in Braille. Upon reviewing the form, he saw that the clerk had given him the French version instead of the English. Until he obtained the English version, he was little better off than I in filling out the form - even with his vision. 4. Blindness may be considered a disability, but how much of a disability is it? If every piece of information available to vision was also available to hearing or touch and rapid transportation were expanded to be efficiently accessible to the blind, how would that affect the way the blind would function? My best estimate is that about 75% of the barriers faced by the blind would fall away. All the world would suddenly come within easy reach, even in blindness. If we think of vision as simply a tool to access information, we can easily see that the principal downfalls of blindness can be removed simply by ensuring that the blind can access the same information as the sighted. 5. The fact that the blind face enormous functional difficulties in the world of the sighted is not strictly a matter of deficiencies related to blindness, but a matter of deficiencies in the relationship between the sighted world and blindness. We are the world for our young blind children. Therefore, the way we relate to our blind children WILL MAKE THE CRITICAL DIFFERENCE in their level of freedom and success. H. Interdependence - independence vs. dependence. It is commonly held that the blind must depend more than the sighted on others. There is certainly some truth to this, but let's look at this for a moment. Are the sighted really so much more independent than the blind, or have they simply developed tight networks of interdependence? The sighted enjoy a rich network of mutual exchange in which they make goods and services readily available to each other. The blind, however, are largely excluded from this network. For example, only about 3% of printed material is made available in alternate formats to the blind. How often do TV commercials now invite the viewer to: "call the number on your screen." So, the blind must learn to function as, so to speak, free agents - apart from this network of sighted interdependence. 1. Take driving. The blind cannot drive, so the blind are vulnerable to depending on others who can drive to cart them around. I am an itinerant instructor and travel all over the world delivering trainings and services. I hire drivers, or use public and para- transportation, or catch rides wherever appropriate. Not being able to drive has its inconveniences to be sure, but does this make me more dependent? Vision is only part of what makes driving possible; one of many prerequisites. It is services provided by society that makes it possible. How many among the sighted have manufactured their own car, or their own gas or oil, or serviced their own car? More importantly, who constructs their own roadways, signs, and traffic lights and lanes? Without these accommodations provided by others, driving would come to a screeching halt for everyone. It is an inclusive social network, an exchange of goods and services, that makes driving possible. We all depend on others to provide services and equipment that allow us the privilege of driving. Likewise, the blind may depend on others for the privilege of rapid transportation. The only real difference is that the sighted are provided with a network of goods and services that generally give them greater freedom and face them with less hassle. It's all a matter of interdependence; everyone is interdependent on everyone else