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. Owning and driving one's own car is much less of an advantage in other parts of the country or world; it's all a matter of how the environment is designed. In some places, public transportation is the norm. And, while someone else is driving me, I'm writing this document and many others besides. 2. Take reading - who prints their own material and who manufactures their own video screens? When I go to the store, I usually grab a clerk to help me select items. Am I more dependent? All the sighted shoppers are reading labels that someone else provided for them. This provides the illusion that they are more independent. When I go to a restaurant, I have the server read the menu. If I'm with a sighted person, they usually read it. Does this make me more dependent? If the menu's available in Braille, I read it myself and make my own choices, but this is often not the case. Sighted people generally don't think about what would happen if they went to a restaurant, and they had no menu to read. 3. Take lighting - How wonderful that the sighted have artificially made light available just about everywhere to just about everyone. How many have manufactured and carry their own lighting wherever they go? 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. Denial of these rights threatens the blind with a most convincing illusion of dependence. Yet, each of these things is manageable. Transportation could be made rapid and efficient by means other than the private coach. Many countries already Braille their money. The voting ballet - well, given that it's available in just about every language under the sun, Braille shouldn't be impossible. I. Ways to thwart independence. There are countless subtle ways to impede the development of independence. Examples: 1. I have a nearly blind student with moderate mobility problems and some developmental delay. He'd been using a walker for many years, and we decided to wean him off. For a long time I worked on balance issues and cane technique. I usually integrate echolocation training, which is the process of using reflected sound to know where things are at a distance. Proper use of this can greatly enhance nonvisual mobility. His instructional aide kept asking me when I was going to teach him how to travel as I do by using this technique. Though he and I did a little training, I put off intensive training, because I anticipated that he would have difficulty grasping the subtleties of it. I wasn't looking forward to the arduous process of instructing him in this area. Finally, I decided "the Hell with it," and gave him a clicker. (The clicker provides a sharp sonar pulse that can enable the blind to "view" their environment from the reflections of the clicks off objects and surfaces.) It improved nearly every aspect of his orientation and mobility by at least 100% instantly. I have never seen such significant improvement in so little time. All the while I fretted over my presumptions about this boy's capacity, when this technique turned out to be the key to his mobility functioning. Go figure. 2. I had to orient a new student to Union Station. I knew that the student had 20/70 vision and some cognitive processing problems. During casual discussion with a colleague many years more experienced than I, she said: "Yeah. I'd want someone around to eye ball the area ahead of time for me." This comment concerned me for two reasons. The first is that, the more we must depend on others to "eye ball" things for us, the more we are governed by other people's agendas rather than our own. Who has someone around on a continuing, intermittent, or even as needed basis to "look over our shoulder" for us and make sure everything's okay? My second concern is that, an instructor's anticipated desire for surrogate visual comfort should play little or no role in the facilitation of the autonomy of our students. Few sighted people ever have the notion that they could function autonomously without vision, so I think that sighted instructors need to guard against holding their students to the standards to which they'd hold themselves. Rather, sighted instructors should concentrate on facilitating a standard of functioning that goes well beyond what they would expect of themselves. 3. When I worked at the Blind Children's Learning Center, I developed a technology grant program that made huge amounts of assistive technology available to a selected number of junior high and high school visually impaired students on an application/interview basis. We sent application packets in both large print and Braille to all V.I. instructors throughout Orange County to pass out to their students. When I followed up the mailing by phone, one instructor said: "I'll be sure and read it to them." When I reminded the instructor that Braille copies had been provided, the instructor said: "Well, I guess I could just give that to them." The automatic response of this instructor to lend his sight so graciously to his sightless students when they already had independent access to the material is just one of countless, subtle examples of how we condition our students to be dependent, rather than facilitate their independence. 4. I recently assisted at a mainstream camp for teenagers where four visually impaired teenagers were permitted to attend. The camp involved a week's participation in very vigorous and highly demanding physical activities ranging from law enforcement, fire fighting, search and rescue, and wilderness survival. At first, the camp staff was antsy and apprehensive about the safety and competence of these blind kids, and me. I had to keep them from putting all the blind kids in one cabin so they could "keep an eye on them." After a couple days, though, all had become impressed, inspired, and admiring with great exaggeration. I failed to prevent the bestowal of lavish honors and plaudits upon the blind students and myself to an extent beyond appropriate. Though this may perhaps not have interfered with the physical functioning of the blind students, it did impact the quality and naturalness of their integration into the camp community. It also allowed a skewed perspective on blind performance and integrity to be engendered in the blind students, and it extended to the other students and the staff. The blind students should have been able to fit in and perform as regular kids - "just one of the guys" - without the extra baggage of erroneous distinctions. 5. At the same camp an associate aided one of the students throughout most of each day and during most activities. This, too, marked that student who was extremely capable, as one without his own autonomy. It also interfered with natural social integration. As another student, who went blind just recently, put it: "No one would come up and talk to me. No one would say anything to me with my aide around. As soon as I started walking by myself to class, it happened. People started talking and saying `hi"' to me." When free and natural community integration is impeded or modified, autonomy is often sacrificed. 6. At another camp of sighted and blind kids, some of the blind kids had difficulty managing basic skills like packing their belongings, rolling up a sleeping bag, keeping track of their clothes and toiletries, and serving their own food. They'd obviously rarely been called upon to do these things for themselves. This left them in a somewhat awkward circumstance in the face of so many around them who were more experienced and capable. The camp staff dealt with the matter by insisting that "the sighted kids help out the blind kids" - admonishing them to "take some responsibility for those who need your help." Responsibility and helping others is not such a bad lesson in itself, but we all, including the blind, must learn to take responsibility for ourselves. When we don't, we end-up restricting ourselves by decreasing our own capacity. 7. During a presentation on facilitating movement in blind preschoolers, an esteemed professional gave an example of rolling a ball to a student. "But be careful to roll it to them," she cautioned. "If you roll it out of their reach, the game's over." Why condition a child to depend on the sensitivity and clemency of the sighted for enjoyment, when an audible ball could be used independently instead? This would enable the child to interact comparably with the sighted, without need for the sighted person to hand them anything. 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 through practice, experience, and deliberate development. It doesn't happen by magic. 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 - physically weaker and more fragile, and less emotionally and intellectually mature than the sighted. It is important that they be treated with special care. Their feelings may be easily hurt. They should be approached with special care and sensitivity, and not be expected to perform strenuous physical tasks." 1. I take exception to these guides we see now and then about "What to do if you meet a blind person." They generally started out with admonitions about being yourself and treating the blind person like anyone else, but then go into a list of helpful hints to ease interaction. How can one have easy and comfortable interaction if you have to follow protocol? They often have to do with how to guide properly, how to explain things so the blind person understands, and how to describe what's on a blind person's plate in terms of a clock face. One even advised that the blind person "may need help cutting meat." In my humble view, these "helpful guides" only serve to further the gap of comfortable interaction. It is up to each individual blind person to monitor and affect how interaction takes place, not for some third party to advise how this should be done. If someone needs help cutting their meat or with descriptions about where their food is, it's up to them to elicit that assistance. Awkward tensions rise when someone goes to offer assistance that isn't required or desired. It is the responsibility of the sighted person to take special considerations of the blind they may happen to meet, but only to treat them with mutual respect and dignity. That's all that's needed. 2. On average, blind people do, indeed, demonstrate weaker physiology, but this trend has little to do with blindness. It has to do with lack of physical exercise. Blind kids are typically kept quiet and still, shielded from participation in standard child activities that build strong bodies and character. Any sighted person thus kept sedentary would develop as poorly or oddly. Blind children encouraged to participate in normal activities generally develop normally. Those who are restricted do not. 3. To the best of brain science, we believe that the emotions are centered in the limbic system and cognition is controlled by the cerebral cortex. The eyes are connected to the visual cortex. When something goes wrong with the eyes, the visual cortex may be affected, but the rest of the brain is left unharmed. When my eyes were removed from my head, the doctor's didn't run their scalpel all the way through my brain. a. I have often been patted on the back and called "partner" and "buddy," mostly by construction workers whom I meet on the street. By women, I am often called "honey" and "sweetie." Phrases and tones of voice are often used with me that are typically reserved for children. b. While helping a friend diagnose and fix a problem with his Dad's stereo, I found the problem, and my friend went to get the tools from his garage. When I told his father that "we found what was wrong," my friend's Dad remarked that his son was very good at that sort of thing. Later, when I sat with that friend and another talking about the political landscape of World War II, my friend's Dad remarked while walking through the room "Dan, you must be bored stiff with all this intellectual talk about politics." My examples could be attributed to over sensitivity on my part, but they are two of hundred's, and they attest importantly to the subtle ways in which we can slight our blind kids. 4. Just because the eyes are affected doesn't mean that any of the rest of the body is affected. The rest of the body should work just fine; there's nothing magical about the eyes that somehow makes the rest of the body work. a. I have had little elderly women jump ahead of me saying, "Oh here. Let me get that door; it's awfully heavy." b. Note how impressed everyone gets with the blind guy who tandem bikes cross country, or who runs the marathon with a sighted guide. The sighted guy had to do just as much work. Where's his applause? Maybe sighted people don't need as much applause, 'cause they got their eyes. C. "Blind kids take longer to learn to read, because Braille is hard to learn. The tactile system just doesn't process information as efficiently as the visual system." 1. Braille is actually little more complicated than print. Standard Braille only contains 63 symbols; there are more than that in printed English. The iconic languages such as the Oriental languages may contain hundreds or thousands of symbols, yet they're learned by many on a regular basis. 2. The difficulty in learning to read nonvisually or with reduced vision is not necessarily a matter of the supremacy of the visual system. I suspect it has more to do with the fact that written language is readily available to the sighted but hardly available to the blind. Again, it comes back to experience. Lavishing Braille or large print on visually impaired kids even before they learn to read will facilitate the development of a level of reading performance comparable to the sighted. D. "Blind people should stay away from sharp implements such as knives and scissors, and they should definitely stay away from power tools." 1. How early these myths become implanted. I remember a struggle that I had with a 6-year-old over a knife, because he somehow picked up the idea that a blind man would hurt himself with a blade. 2. One time, I and some blind friends were using a chain saw to cut up a large tree that had fallen across the trail. Forestry did not appear to be taking responsibility for it, so I took it upon myself to get it done. A forestry official came and stopped us. I could see the wheels turning in the man's head as he tried to figure out how to handle this. He said that we were not qualified, but he wouldn't give specifics about what would qualify a person. I gave him the benefit of the doubt that he hadn't stopped us because we were blind. I've since discovered that there is, indeed, special schooling and certification for operating a chain saw, which seems sensible. Later, a mutual friend of mine and the forestry official told me that the man was truly shocked at seeing me standing there with a chain saw. 3. The ounce of truth that may exist here comes from the fact that the blind may have their hands and fingers on or near the blades for obvious reasons. This may result in more frequent cuts or scrapes, usually minor, but not as a result of diminished capacity. E. "Blind people should move slowly, and never run. They should always use the railings when traversing stairs and should avoid uneven terrain lest they fall and hurt themselves. They should not travel alone in unfamiliar areas. They should be familiarized to new areas by a sighted person before attempting to travel them." 1. This myth is held to some degree even by Orientation and Mobility Specialists of the modern age. 2. Slow movement tends to give rise to anomalous gait patterns such as out- and in-toed walking, foot shuffling, stiff gait, and rocking gait. A quicker pace with longer stride reduces anomalous gait patterns, improves balance, and improves both body alignment and alignment to the environment. It also allows a person to get to destinations more quickly and efficiently. a. I had a totally blind student with a prosthetic leg from the knee down who walked faster than I do. b. Alignment: Alignment is particularly important to the blind. The sighted have easy access to enough information to guide their path of travel. The blind sometimes just have to sense their path of travel. A sense of alignment is thus important, and this is increased with greater walking speeds. c. Balance: If you've ever tried walking on a boat, train, or bus, you know that increased speed also increases balance. The same is true with skating; we can't pull stunts as easily in slow motion. 3. Familiarity with an area certainly does facilitate comfort and efficiency in traveling. However, the blind can learn to travel effectively in unfamiliar areas with the application of acute perceptions, experience, and strategic problem solving skills. F. "Vision is the most important sense for learning." It is true, vision is great for accessing lots of information very quickly. Psychologists estimate that approximately 75 to 90% of communication occurs visually. Educators suggest that about 90% of learning occurs through the visual channel. 1. If this is true, then deaf people should "have it made" compared to blind people. Yet, the unemployment rate among the deaf is nearly that of the blind. How much would you all have gotten out of this meeting by lip reading if I hadn't provided you with a written outline? How much would you get out of the outline if it were provided in Braille? 2. Much is available through nonvisual channels if we choose to make it so. Body language and facial expression have analogous components through the voice. G. "Blind people shouldn't cook because they might burn themselves, make a big mess, or catch something on fire. If they do cook, they should definitely avoid open flame." H. "The blind learn best through formal training by specialized professionals, and they need lots of adaptations and modifications to function." 1. Though I did receive some specialized training in select areas, I never went through special programs to learn what I know. I received relatively little mobility training, no occupational or physical therapy, and very little in the way of special classes or programs of daily living skills. Further, aside from a wealth of adaptive computer equipment, my living quarters is largely unmodified for use by the blind. I have not a single raised symbol on any of my kitchen appliances. 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." The important thing is simply that the blind just do it. The blind learn by doing; there needn't be a perfect or special way. The logistics iron themselves out with the process of doing. 3. I remember once a couple of students I had on an outing refused to do the dishes. I, consequently, refused to make them breakfast. One of them simply whined and moaned and would have starved (and I'd have let him). The other, also disgruntled, rummaged through the cupboards and found some pop-tarts. Drawing on a little past experience, he put them into the toaster oven, guessed when they might be done, and deftly removed them with some make-shift implements - all with no help from me. There's the difference - one took control, the other remained controlled. I. "It is the responsibility of the sighted to care for the blind." 1. Society carries the responsibility to support each of its members in facilitating their ability to care for themselves and fulfill their potential. This means making basic resources and opportunities equally available to all including the blind. The blind are not special here, they're just part of the whole. I'm not talking about special rights or privileges, just the same ones. The blind are perfectly capable of caring for themselves the same as the sighted, as long as the same rights and privileges to society's resources are available to them. 2. I once held a door for a gentleman. He said, "Wow! I never expected you'd be holding the door for me. I guess maybe you guys can work as hard as the rest of us." I once held a gate for another gentleman who flatly refused to go through it while I was holding it and insisted that I go through while he held it. 3. On my way to my job interview at the Blind Children's Learning Center, I walked into an establishment near an unfamiliar bus stop looking for a Bank of America and something to eat. To my dismay everyone in the place spoke an Oriental tongue and none of them with very good English. Gathering that I would get little help here, I was on my way out when someone approached me speaking slightly better English than the rest. He asked me what I was looking for. He indicated that the nearest B of A was several blocks down. I shook my head with the realization that I would not make it before my next bus. When I thanked him and turned to walk away, he said that this was on his way to school, and that he would like to take me. Upon starting out he said, "We are responsible to feed and take care of disabled people." I responded immediately, "We are responsible for ensuring that disabled people can feed and take care of themselves." He told me sadly about his blind room mate, and how, "all he can do now is feel bumps with his fingers." I informed him about Braille and about what I do for a pretty healthy and comfortable living. Needless to say, he had not the foggiest notion of such possibilities. 4. At a 2-day camp where blind and sighted kids were mixed, it became clear that many of the blind kids had been pampered. They struggled with things like rolling up a sleeping bag, packing and unpacking, keeping track of their stuff, and generally taking care of themselves. The counselors kept encouraging the sighted kids to "help 'em out" saying things like, "you know what this is about," and "remember, consideration for others." Of course it's nice to have consideration for others, but we go wrong when we imply that one individual or group must fall under the responsibility of another by virtue of a perceived incapacity. Evidently, many of these blind kids had been treated in just this way most of their lives, and they became helpless when the time came to show their medal. J. "The blind are defenseless in situations of combat and are especially vulnerable to assault and robbery as in the expression 'robbed blind'." 1. Like the sighted, some are, some aren't. 2. The statistics are mixed on this point. L.A. Times released an article which stated that 75% of the blind population in L.A. had been assaulted. I was assured in New York, however, by members of one of the blindness organizations that the statistics there indicate that no more blind people suffer assault than the sighted. 3. When I was a kid, I was the school menace. I used to go around protecting other kids who couldn't or wouldn't defend themselves. I rarely lost a fight. My strategy consisted of immobilizing opponents before they could hit me too often. One of my former totally blind students joined high school wrestling two months late. He participated on equal terms against sighted kids at the Junior Varsity level, and took second place in the league. The match he lost occurred when he was ill, and he later defeated that opponent. The next year, he took first place in C.I.F. He says, "sighted kids are wimps." He even took on kids well outside his weight class with encouraging results. 4. I know of one recently blinded man whom someone tried to rob in L.A. They tried to sneak his wallet from his pocket. This ploy is less likely to work with a blind person than a sighted, because the blind are likely to be more attuned to their tactile sense; he felt someone try to lift his wallet. He grabbed the wrist of the thief in an arm-lock and quickly got the better of him. K. "The blind cannot appreciate the world's beauty." 1. Who says that any great part of the world's beauty is only available to the eye? 2. To a blind person deeply attuned to their senses, every ocean wave, every bird and insect, every gust of wind, every rain drop and thunder clap, every tree and hill, every vehicle and airplane, every human voice, every cave and tunnel, every bell and whistle, every foot- fall, and every major man-made or natural phenomena casts its own acoustic personality. It is rare that any two things sound alike. Further, the body can thrill at every breeze or ray of sun, endless and countless textures, aromas, tastes, and thrills of motion. Like the sighted, the blind can perceive a world full of dimension. I am not locked in a prison of constricted sensation. L. "The blind need the sighted to lead them and tell them what to do." 1. Let us consider for a moment the household expression "the blind leading the blind." Is this a positive, pro-functional reflection on blindness? 2. Of all of the mobility "skills" taught to the blind, probably the most proliferated is "sighted guide." a. This is a strategic way for a sighted and blind person to work as a team when traveling together. While there is a time and place for this technique, and while this technique does have utility for some people under some circumstances, I believe that it was developed more for the peace of mind of the sighted than as a tool toward blind autonomy. It keeps the blind within the sighted sphere of influence. It arose from an outmoded belief that a blind person's navigation is enhanced by the use of someone else's eyes. While eyes work very well for sighted people, please understand that the eyes of a sighted person have very limited use for the blind. b. I was so functionally oriented when I was a kid that I thought the term "sighted guide" was really "sided guide." I'd never seen it spelled out on paper. I just thought it referred to two people walking together "side by side." I didn't even think of it as referring to the use of a sighted person as a guide. c. Sighted guide is the black hole of mobility. Every step taken under guidance may be an opportunity lost for learning. Who learns more about driving, the one who's driven all their lives, or the one who remained a passenger? Isn't it more difficult to remember the way somewhere when you've been a passenger? d. I think I would rather we required our blind kids to cue off of an auditory stimulus such as car keys, bells, footsteps, or voice. Don't our sighted kids cue off what they see rather than needing always to hold on? Why can't our blind kids learn to cue off of what they hear in the same way? Learning to walk with a companion based on hearing is a skill that will be more useful to them later than just holding on to someone. Auditory skills are key to many activities such as crossing the street. I once heard a mobility instructor, in the same conversation, praise a kid for his high level of functioning, and condemn the parents for making him walk unguided on a trip to Disney Land. I asked her why she thought his skills were so good. They weren't an accident; they were developed through natural experiences an growth opportunities orchestrated by his parents. 3. Some of the crustier blind people have a saying, "Sighted people know what's best for the blind." This expression is usually accompanied by a most poignantly sarcastic sneer. 4. How many commands do we give our blind students? .. "Go to your right." "Bend down." "Go forward." "No, stop." "Turn around." "Wait here." "Step up." "Step down." And, how often do we physically grab, push, pull, and otherwise man-handle our students? How many sighted people would care to have a perfect stranger come up to them off the street and start grabbing and yanking? 5. I was walking to campus from my apartment, when I found myself showered with commands from a troop of guys sitting on a balcony .. "Right. Left. Lookout for the tree. Now, go right." I have ways of handling such situations, but I find them intensely unpleasant. I've become less polite. 6. Our blind kids are human beings; they are not automatons to be remote controlled. Think of it this way. Most sighted people drive. How many sighted people like to be told what to do while they're behind the wheel. The term "back seat driver," is a pejorative term, because no one likes it. Who are the sighted to think that "back seat driving" the blind is any more acceptable? 7. Sighted society tends to consider itself greater and more powerful than the blind. The blind are thus conditioned by an overwhelming majority of thought to believe themselves to be lesser than others. Those who believe themselves greater have always felt the right to tell those perceived as lesser what to do. 8. I have found that asking strategic questions that help blind kids to process their environment for themselves is more constructive in the long term than spoon-feeding them information or pulling their strings as though they were puppets. This takes quite a knack, but it's worth developing if we really value the independent functioning of our kids. They won't have a sighted person hover over their shoulder for the rest of their lives to make sure they do it right. M. "Those few blind people who really succeed in life are special. We really shouldn't expect that of everyone." 1. A term commonly applied to the blind who perform successfully is "super blind." Let's think about this. What is it that a blind person would have to be able to do to earn this title? Why might a blind person find this term offensive? 2. Everything that I and other blind individuals can do that would be considered functionally successful is not the result of prodigy or chance, but of good, solid development, and hard work. Certain talents always help, but where does talent get you without hard work and constructive direction? N. "Blind people are courageous." 1. A man once followed me for quite some while as I walked from a student's apartment. We walked over broken sidewalk and crossed some streets. When it came time for our paths to part, he said, "Sir, I just have to say that I marvel at your courage." I was feeling a bit feisty at the moment, because my student hadn't been home for an appointment which was going to mess up my transportation schedule. I responded, "It is not courage, it is skill and need." He responded in turn, "No, I think it must be courage." I shook my head and turned to go on my way wondering why this man was arguing with me about my awareness of what it takes for me to do what I do. He imposed his assumptions upon me and would not let them be challenged. For him, perhaps it would be courage, but for me, it's need and skill. 2. A similar comment was made by a woman whom I'd caught up to as I hiked to my cabin one day, "It must take such courage to come out here on your own like that." I replied politely that it wasn't courage, but necessity that enabled me to do this. 3. I think that courage may play a part in a blind person's success, just as it plays a part for us all. But I think the larger roles are played by knowledge, the use of knowledge, and the confidence in one's knowledge and its use. O. "Blind people aren't good at math or science - especially abstract math such as algebra and calculus, and spatial math such as geometry and trigonometry." 1. I once believed this myself. I remember saying to someone that vision seemed conducive to grasping mathematical layouts and concepts. When I said this, a blind friend was near by. He told me that I was "full of it," and that when he learned his math, he learned it very well from a blind teacher. I conceded the point. 2. Some of the most thorough and comprehensive research in blindness and intelligence indicate that people blind from very early in life exhibit a higher aptitude for arithmetic than the general population. a. I knew a man in college blind from birth who majored in math. He aced all the advanced math courses. Now, he teaches math to sighted elementary school children. b. In order to get around and function without vision, people may develop more advanced problem solving abilities and perhaps, other mental abilities. Certain mental processes may take over where vision leaves off. 3. It is true that blind people seem to exhibit difficulty doing math. I firmly believe, however, that this has to do more with the mechanisms and processes used to teach it. a. It can be difficult to perform mathematical functions using a Perkins Braille writer - not necessarily because Braille is bad for math, but because the Braille writer is a highly structured device that makes it difficult to write complex mathematical formats. It's like doing math on a typewriter. A sighted person would find that to be a drag. b. I think that we need to evolve our teaching strategies and processes to facilitate the learning and performance of math by the blind. P. "All blind people cannot see. Low vision is no vision." 1. Legal blindness is defined by a visual acuity of 20/200 or less, or by a visual field of 20 degrees or less. This amounts to less than 10% of normal vision. a. Visual acuity is a measure of how far a person has to be away from something and still see it clearly. Most people can see standard print at about 20 feet away. As the print gets larger, most people can back away further and further, and still see the print. People with normal vision can see some print over a thousand feet away. Visually impaired people may have to be 20 feet away to read print that a person with normal vision can read from 200, 400, 800, 1000, or even 2000 feet away. The first number in a visual acuity rating (usually 20) represents how far away the person being tested was from the eye chart, while the second number represents how far a person with normal vision could be to read the same print. Vision of 20/200 is roughly one tenth of normal vision. An acuity of 20/10 indicates that the person tested could see print from 20 feet away that a person with normal vision would have to be 10 feet away to see. b. The visual field is how much a person can see from side to side and up and down while looking straight ahead. A person with normal vision can see 180 degrees - roughly from ear to ear and knees to forehead - while looking straight ahead. A person with a 20 degree field may not be able to see beyond the boundaries of their own smile while looking straight ahead. 2. How well a person performs does not necessarily depend on how well they see, but how well they use what vision they have. Some people with 20/1000 vision can out perform those with 20/200 because they use their vision more strategically. As with totally blind kids, the higher the expectation, the better the performance. a. People with about one tenth normal vision (20/200) can often drive and read normal print with special training and equipment. b. One student with vision worse than 20/2000 could spot a soccer ball near him on a field by paying attention to the difference between the color of the ball and the color of the grass. This is called contrast perception, and it can go a long way. 3. Are you half as capable as a person with twice your vision (20/10)? About the only thing that a person with twice normal vision can do that others can't is pilot a fighter jet where (20/10)? is required. 4. It's bad enough that we treat blind people the way we do. Why treat someone who can see that way? a. One preschooler with 20/200 vision had everything done for him by the preschool staff while the others were expected to do for themselves. Yet, this boy could see well enough to perform all these tasks visually as well as anyone else. b. One parent of a girl with 20/400 vision spoiled her to the point where she wouldn't do anything she didn't want to at school. Q. "Blind people are best off with dog guides so that the dogs can take care of them." 1. In reality, only about 5% of blind people use dogs. Dog use is a personal choice and a good one for many people. It does not improve independence or safety for everyone and may even hinder these things for people who's mobility is extremely good or extremely poor. Also, dogs are a lot of work. 2. While dogs may perform services for people, 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 and only about 10 to 25% of those are totally blind. B. In the minds of the sighted from the dawn of recorded history, the blind have been held aloof as one of the most mysterious and enigmatic segments of our population - sometimes revered, more often condemned or shunned, but never embraced into the general fold. 1. The Tibetan wheel of life, one of the most ancient spiritual symbols depicts eight levels of spiritual development. The lowest levels, the stage of complete ignorance, is represented by a blind man feeling his way with a stick. 2. More ancient than this is a Hindu legend which forms the foundations of Hindu spirituality "The Mahabarata." It tells of a war between good and evil - between truth and deceit, between knowledge and ignorance, between five brothers descended from the gods and a blind king with his 100 sons. Guess who represents the less savory side of the story, and guess who loses the war. C. Though I am blind, I am fully human, and as a human, I possess the same basic psychological, social, and physical needs that all humans possess - to be free from undue restriction, to be capable and competent, to know a sense of belonging to and comradery with the world, and to respect myself and hold the respect of others. I have the same ambitions and dreams as others, and I am nourished by the same hope and assurance that I will realize these things. Despite the colossal historical precedent to segregate the blind from the rest; the fact that I fully share these basic needs and qualities makes me quite a normal human being. Examples of freedom - 1. One of my former students wanted to play street soccer with his friends. He didn't really want to play competitively; he just wanted to kick a ball around with his friends. He had a brilliant idea of tying the ball loosely into a plastic bag. The ball rustled and crackled noisily everywhere it went, allowing him, indeed, to play quite competitively with his sighted high school friends. 2. Dr. Kent Colours, a blind, world renown physicist, tells a story of when he was 5-years-old. He was playing with his neighborhood friends on the front lawn. When he came in at dark, he had not cleaned up the lawn and brought in his toys. His mom made him go back out, alone after dark, to pick up his toys and bring them in. Dr. Colours says that it took him an hour, but it was an hour well spent in terms of its impact on the rest of his life. 3. When I visited New York with some classmates, there were several occasions when I wanted to visit places in which no one else was interested. I went alone. I was not stuck on someone's arm because of fear or lack of ability, and I traveled with assurance that I would keep myself safe, maintain reasonable grace and get back to the hotel on time. Now, if I had chosen to go with someone with hand on arm, it would have been my choice, not my need. D. The distinctions drawn against the blind are man-made, but does life itself care who's blind and who's not? I don't think so, and here's why. 1. Ultimately, this world is comprised of a pool of things that we all want. We may be willing to share, but we must also have and keep for ourselves, too. 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. I assure you that life does not say "oh, you're blind, so you get a bonus or break to help you out." NOT AT ALL. Life simply requires the blind to perform at the same level as everyone else to earn the same amount as everyone else with NO consideration given to blindness AT ALL. Life doesn't give special favors no matter how much we may wish that it did. 2. For those who are religious and believe that the Powers That Be show extra mercy to the blind and disabled, I say that, while mercy may be shown us all according to our need or deserving, it is stated clearly, at least in Judeo-Christian doctrine, that "God helps those who help themselves." History shows that what the blind have, they've achieved more by force of determination than by charity. The blind who are conditioned by society not to help themselves simply reap less reward. My own experience prompts me to infer that, while society may assume and even encourage the helplessness of the blind, the Powers That Be do not, and they judge the blind by the very same criteria applied to all. Life has granted the blind few favors; it has yielded to hard work. 3. A study was conducted on sighted and blind high schoolers performing a variety of physical tasks. By measures of cardio- respiratory functions, galvanic skin responses, etc., it was determined that the blind students expended 25% more energy to accomplish the same tasks. 4. Is all this fair? Does that matter? 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 and need for ourselves and others. XI. SOME MORE BLINDNESS NORMALCIES A. Kids are kids first and blind second. 1. There is an enormous emphasis on all the special services and adaptations that blind kids are perceived to need. Perhaps the emphasis should focus on the things that benefit normal kids and finding adaptive ways to provide those same things to blind kids. Is it that blind kids need special things or just that they need to access the same things in special ways? 2. Everything we do with our students and children must come from knowing that they need to function similarly to all other kids. That does not necessarily mean doing every single thing that everyone else does or even wanting to. It means being able to live life as fully and richly as everyone else. It means being able to participate enjoyably and fruitfully with others. If they're not, it may not be due to the blindness; there may be something else. Either there are other issues or involvements with the kids, or there's something we're not doing that we should, or are doing that we shouldn't. 3. Though there are a few special needs, these needs ensure normalcy, not detract from it. In truth, there's much more normal about these kids than not. It is primarily society's warped and eccentric approach to blindness that can ruin their normalcy. If we took any sighted child and raised them the way we raise blind kids - restricting movement, babying and coddling, expecting low achievement, protecting and sheltering, etc., - they'd come out pretty screwed up too. B. Blind kids must do what they cannot see. In order to be expected to participate in the world along with the sighted, the blind need access to the same information, experiences, and resources as the sighted. This includes information by which we understand how the world works - that objects always fall when thrown or dropped, that flames rise and burn what they touch, that streets are laid out in patterns that are fairly predictable, that traffic travels according to specific rules, that sighted people look at what engages them, that every action elicits a corresponding consequence. Blind kids need all the same input that sighted kids get, because, just like sighted kids, that's how they learn about the world. The only difference is in the medium of input. Where sighted kids can learn enormous volumes of critical information about the world just by looking around, blind kids CANNOT learn by watching. They MUST learn by doing - by direct, physical interaction and exposure. 1. Blind kids can learn what they need to learn, but they have to DO it. If we step in to help too quickly or too often, we interfere with their capacity to learn just as if we were constantly to get in the way of a sighted child's view. We do this because it pains us to see poor little blind kids struggle with tasks that sighted kids seem to pick up so easily. By doing it for them, we can put out of our minds the difficulty that they have and in essence, pretend that there is no difficulty. But, for the blind, struggling is the primary way to learn, since they can't learn by watching. When a sighted child is first exposed to a task, they can learn much about how to do it by watching it performed. They can even do this without thinking about it by osmosis such as passively observing someone change a light bulb or scramble an egg a hundred times. When it comes to their turn to perform the task, sighted kids may still have a lot to learn, but they may still be able to perform the task tolerably well. Blind kids may do a really lame job at first, because they may be attempting the task for the first time with little previous exposure. The same is true for sighted kids asked to perform tasks that they've never seen done. Instead of learning the initial stages by watching, blind kids must figure it out by hands on experience and trial and error. They may still learn it, but the learning process may take the form of a struggle. a. I remember the first time I bowled. I had never bowled before, but I'd heard bowling on "Bowling for Dollars." I guessed what bowling was like based on what I'd heard on TV. I liked the sound of the ball hitting the alley as it was thrown. Having received no instruction or direct exposure, I lobbed the ball overhand, thinking that the anticipated crash would match what I'd heard on TV. The instant the ball struck the alley, I knew I'd done something wrong. We were all very surprised. b. One of my former students loves to repair broken equipment around his V.I. classroom - Braille Writers, computer monitors, etc. He is very adept because of his practice; he's never watched a soul or received any instruction, but at home, he's always the first to figure out how the new answering machine, cordless phone, or stereo works. 2. Sight isn't magic; it's just one way of doing things. We need to remember that sighted kids don't pick up instantly on everything either. Few sighted kids ever caught or threw a ball very well the first time. It takes many years of practice for most to get very good at it. No one ever learned to handle a ball just by watching someone else do it. C. Blind kids, like all kids, MUST experience freedom of movement. Any kid, blind or sighted, whose movements are constricted will develop strange physical and psychological characteristics. There is no reason for blindness to limit movement substantially; society limits movement. Why? We punish sighted kids by limiting movement: "you're grounded," "Go to your room." So effective is limiting movement that kids modify their behavior to prevent the experience. We also limit the movement of blind kids: "Stay inside," "you shouldn't be doing that." But, they haven't done anything wrong. Common results of restricting movement include - 1. Impaired movement skills. Blind kids who have limited experiences with the world in motion develop an impaired sense of space. They lack understanding of how the world fits together and how they relate to it. Such kids become easily lost, they move slowly and with exaggerated caution, and they dislike or are fearful of self motivated movement and new situations or stimuli. 2. Low overall physical capacity (low muscle tone, physical weakness, lack of aerobic stamina, poor coordination). It's lack of practice and experience. We simply don't develop ourselves by remaining idol. I know that none of these things need be associated with blindness, because I know many blind individuals who suffered from none of them as kids. I was actually one of the strongest and most coordinated kids my age. 3. Apathy and lack of ambition. When movement is restricted, children fail to learn that they can act to obtain what they desire. First goes the will to act, then, the desire to act. Kids become passive and reactive, rather than active. They may wait or wine for things to come to them or be done for them, rather than taking the initiative to obtain what they want or need. They may also sit unproductively unless someone is present to prompt and guide their behavior. 4. Self-stimming (hand flapping, rocking, head banging, finger flipping, eye poking, etc). So necessary is movement to physical development that when it is restricted, the body seeks other avenues. Self-stimming is reduced by freedom of movement. The body has neither the time nor the inclination to self-stimm when it is productively active. 5. Inappropriately strong reactions to mild circumstances (tantrums, loud voice, wild mood swings, etc). Much of children's play teaches the appropriate channeling of emotions. For example, consider what boys do to a ball - kicking, hitting, bouncing, catching, throwing, striking, retrieving ... What could be more playfully aggressive, yet, at the same time, perfectly safe and appropriate? Also, the nature of many cooperative and competitive games forces the learning of patience, forbearance, and other forms of self management. When children are restricted from such avenues of self expansion, they develop expressive patterns that are inappropriate. 6. Hands that remain baby smooth. Though characteristics of skin surface vary somewhat from person to person, baby smooth hands indicate hands that haven't done much. When I find baby smooth hands in children even as young as 8 or 9, let alone teenagers, I become very aware and concerned about the nature and degree of this child's activity. D. Blind kids, like sighted kids, need to grow up and at roughly the same rate. I say roughly, because no two children develop the same, and there are often circumstances connected with blindness that legitimately slows development. Also, the fact that so many things are presented visually in this world can slow the process of understanding the world nonvisually. And, let's face it, vision does provide a very quick and efficient way of gathering information that other senses are hard pressed to match. Still, the kids have to grow up. We don't do any favors by treating them as half their age. E. The phrase "I can't" eats success. We need to eliminate "can't" from the blindness vocabulary, and make "I don't know" extremely conditional. What we lack in eyesight, we need to make up for in the mind and heart. If the blind kid "doesn't know" then he needs to figure it out, because that's what life will be all about. The answers will NOT be readily forth-coming. On the contrary, they will be withheld. A blind individual does NOT have equal access to all the range of resources that the sighted do. They must fight ruthlessly and exercise extreme cleverness about obtaining what they need. F. Blind kids, like sighted kids, have difficulty interacting with stimuli or targets that they cannot perceive. For example, a common sport for the blind in adaptive P.E. is archery. The "adaptation" usually involves having a sighted person aim the arrow, while the blind kid lets it go. If it hits the target, the blind kid is applauded, but whose skill sent the arrow to its target? The applause is hollow and false. We don't force sighted kids to aim at targets or interact with stimuli that they cannot see. Why do it to blind kids? How can this activity be made more meaningful and functional for these kids? G. Blind kids benefit from good, conventional, parenting skills - always do what we say we'll do, provide clear positive and negative consequences to actions, and don't be manipulated. H. Blind people benefit more from doing for others than being done to by others. 1. I once encountered a woman on a train who was fearful about reaching her destination. She believed that she was on the right train, but she didn't know at which station to detrain or how to get to her final destination from there. She had a bus schedule with her, but I could see that it wasn't helping her. She wasn't sure how to read it, and it didn't seem to cover all of her options. I used my cell phone to call the transit authority where she needed to go and explored some possibilities with the agent. After about 5 minutes, I determined a very straightforward route for her to take. She was extremely relieved and grateful. 2. A blind mother was walking with her young children. They were scampering along ahead of her as children often do. At a corner, she heard an elderly man whisper into her daughter's ear: "you be sure and take good care of your mother." Since when were young children supposed to "take care" of their adult parents? 3. We have a tendency to cast the blind in the role of the recipient rather than the provider of care. The blind, like the sighted, are perfectly capable of providing care and service to others and, like the sighted, need to do so to round out and fulfill their lives. All of the wonderful programs and specialties available to "help" the blind are nice, but the best way to help the blind is to encourage, motivate, and allow them to help, not only themselves, but others as well. 4. 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. How can one consider themselves a worthy contributor to one's surroundings when one stands alone as the pitied recipient of others' contributions? The way to one's own power is through one's own action. 5. When I was in school, I participated in news paper drives, selling raffle tickets, group leading, helping out and protecting the new kids, tutoring, etc. 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 around them. 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. I went through the normal stages of career interests when I was a boy - police man, fire man, pilot, doctor, etc. These are healthy phases of interest, and they should not be discouraged. There is no telling what life will bring. Due to modern technology some legally blind people can drive, totally blind people can read, and artificial vision is just around the corner. B. They were treated as normal kids. I was disciplined very normally and encouraged and allowed to participate in all normal activities of boyhood including bicycling, ball sports, climbing, swimming, skating, roughhousing, traveling around the neighborhood and city (when old enough) including walking or bicycling to and from school, etc. I was fully integrated with all the normal kids in school and the neighborhood. This helped me to understand that I was a normal human being. C. They were allowed to test their own limits by trial and error rather than face limits imposed by presumption. My parents and teachers did not stifle me with assumptions and presumptions about what a blind kid could and couldn't do. I was allowed and encouraged to find it all out for myself by trial and error, by success and failure. How can one learn about success if one is never allowed to orchestrate one's own successes and failures? XIII. COMING OFF IT, GETTING WITH IT, AND MOVING ON - We're all creatures of habit, and we tend to remain comfortable doing what we've been doing. We also resign ourselves easily to beliefs we've come to hold. We need to examine those, decide what works and what doesn't, and simply change what needs to be changed. "If we do what we've always done, we'll get what we've always gotten." A. Get rid of the guilt. None of us caused the blindness. If in those rare occasions we did do something that might have contributed to the blindness, too bad. It's done. Now, it's time to fix it, and we can fix it by helping our children and students to gain power and mastery over themselves. Can we do this by protecting them from every harm, and doing everything for them? No. To do this is to drain them out of their power. 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. 1. While I was walking through the parking lot to get my mail, a woman once came up to me and congratulated me on what a wonderful thing it was that I could get my own mail. "You should be proud of yourself." I told her that I should hope to be proud of much greater accomplishments than being able to get my own mail. 2. Once while talking to parents of a blind child, they expressed great praise for their 7-year-old being able to find his way around his own home - a home in which he'd been living for several years. "It's just amazing how well he finds were way around the house." In actuality, this boy demonstrated fairly severe mobility deficits and emotional immaturity. 3. Such minor feats seem artificially major to the sighted, because the sighted need their vision to do them. Once you become blind, vision is irrelevant. You simply do these things anyway, just without the vision. By expressing such lavish praise of such minor feats, we diminish the blind. When we hold such wondrous appreciation for the simpler tasks, we fail to respect the blind for their wholeness, and we fail to nurture the strengthening of greater abilities in the young. C. Close collaboration and mutual follow-through among all members of the educational service team is crucial. How else can all members remain informed about what each is doing and how each might act to enhance what each is doing? How can parents facilitate the child's reading, mobility, and recreational skills if they don't know what the V.H. instructor, mobility instructor, recreational instructor, and other specialists are doing? Further, how can the specialists enhance the strengths and teach to the needs of the children if they don't know the expectations and desires of parents? The family is the most critical aspect of the team. If professionals have no contact with the family, then everything they do is diminished. 1. One set of parents expressed that they had no idea that their 13 year old boy would ever be able to hold a career until he met me. 2. A fellow mobility specialist and a social worker visited a young boy's family to achieve a better understanding of why this child wouldn't move or participate in any functional activity at his preschool. They found that the entire family, except the mother, did everything for the child at all times. The mother found herself at odds with the family in trying to motivate her son to do things for himself. The visit helped the rest of the family understand and align productively with her perspective. Also, during the visit, the child on an occasion walked across the room to his father. Neither the mobility specialist nor the social worker had ever seen him walk anywhere and didn't know that he was currently able to do so. D. We need to seek and use the knowledge of others' experience - other parents, professionals, and blind individuals. None of us knows it all. I can say what I say pretty confidently. But, you have know idea how often I consult with others to verify and expand upon what I think I know. It is an integral part of my job. 1. Remember, most parents and professionals are sighted and, therefore, may hold limited understanding of visual impairment - particularly low vision needs. Low vision needs may actually pose a greater mystery than total blindness, because we can never know exactly what the low vision child is and isn't seeing. 2. Consulting with other parents is helpful, because other parents have already dealt with a lot of stuff. 3. Developing contacts with positive, pro-functional blind individuals is real important when possible. It's easy for sighted kids to find people to look up to, because the world is full of sighted people worth looking up to. It's fine and necessary for blind kids to have sighted role models, too; that's the world we live in. But, remember that the world was ready made for sighted people, so sighted people usually have it relatively easy. Everyone expects sighted people to prosper. So, by-and-large, they do. There are no logistical questions about how sighted people are going to manage to do things. There are always logistical questions about how blind people will do everything and the process of creative and ingenious thinking necessary to figure it all out can best be fostered by someone who does it. E. Lift the limits and free the children: Although everyone faces limits, limits should not be imposed or presumed upon anyone. Each of us, blind or not, should have the freedom and strength of character to seek and discover our own limits and strengths, not have them imposed on us by others. 1. Once when I was showing a video to some parents about what blind people can do, the Mom said, in front of her son, "Oh! My son will never walk as fast as you." I responded immediately, "He most certainly will, unless there's something wrong with his legs." In this exchange, Mom blew it by slighting her son's potential. Now, how did I blow it in my response? a. I've spoken of my student with a prosthetic leg who shows no ambulatory deficiencies. b. I've also had students with orthopedic and/or neurological impediments who do just fine and who have every chance to further refine their abilities. 2. Imposing limits is easy; it's just a matter of setting a bond or boundary. Lifting limits is the hard part, because with freedom comes responsibility and facing the unknown. When we confine our children or students to a specific set of activities under specific circumstances, we don't have to worry much about what might happen, and it alleviates our responsibility to manage our children in the broader and more unpredictable world. We needn't worry much about teaching our children how to engage the world constructively if they're not engaging the world. However, when the time comes for them to live their own lives, we'll need to ask ourselves, "who's going to help them?" because they won't be able to help themselves. 3. 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. These are the two most destructive concepts to any child, especially one who is disabled. If we walk away from here with no other awareness, I would bet my hearing that this understanding alone will see a many-fold improvement in the quality of the future lives of our kids. F. Some of us may need to institute some changes in the way we approach our students and children, but we're not sure how to do it. We get into habits that are hard to break, and we come to accept unacceptable or maladaptive behaviors out of custom. It may be hard to see past these to a new and more productive way of doing things. Also, our students and children may resist any change that seeks to foster their growth. I had two students who would throw unholy fits whenever they were asked to do anything that faced them with a challenge. Who wouldn't want to be waited on hand and foot or have every distress comforted with a gentle hug and kiss? But, who wants to live in captivity? If we treat our students and children like sponge-mallows, then life will treat them like sponge-shallows by ringing them out. I remember how difficult it was to implement change when it came to my dog. But, we have a really good opportunity right now. Sometimes, it's easier to change if you get a fresh new start. Use an important transition as a spring-board to change, such as the new school year, or a birthday, or the New Year, or the new semester. We can warn our students that when the next year or period begins, certain things will change, because "big kids do, or don't do, (whatever)." It could be anything and everything from keeping the room clean, to taking more responsibility around the house, to doing the homework, to feeding oneself, to standing on one's own two feet, to using the cane or other aids, whatever. The remainder of the present time can be preparation, but the beginning of the new year will see a new emergence of growth and self-empowerment. What is more important than that? G. Responsibility and attention, not vision, are the keys to competence. I've got totally blind students who are safer crossing streets than the average sighted kid their age, because they are responsible and attentive to what's going on around them. It is not the amount of perception that is important, but how we use what we have. H. "Sticks and stones may break their bones, but names WILL REALLY HURT THEM." Physical injury goes away quickly, but psychological injury may never heal. Sticks and stones may damage, but words and ideas can destroy. I was allowed to get hurt. I broke my first two teeth on a pole at the age of six. I was allowed to crash, to smash, to fall, to get bludgeoned by flying objects, to lose fights that I started, and to cry. How much more typical could my childhood have been? How else can someone learn to get up again and eventually to keep from falling, if they're never allowed to fall? Running into a pole is a drag, but never being allowed to run into a pole is a disaster. I. The earlier the easier, but it's never too late to start. 1. I've known parents and professionals to put off emphasizing critical skills and delay interacting with their young charges in fully constructive ways. Why? 2. A common misconception seems to be that these skills can just be picked up later, as though there was some magic time during the last few years of high school when everything would just come together. When it doesn't, everyone's suddenly up-in-arms as to why. 3. Sometimes it can "come together" in the end after a long struggle, but the phenomenon of coming together generally happens after a great deal of constructive experiences and input over the course of many years - starting with early childhood. Things don't just magically come together when we think they should; we have to make sure they come together. 4. More commonly, the development of active, productive, functional abilities is gradual and exciting, just as with sighted kids - IF the NECESSARY INPUT IS GIVEN. The time to start is NOW! 5. If the child is older, is there hope? Always. a. "Where there's Life, there's Hope." b. "Where there's a Will, there's a Way." c. I am not being trite or flippant. I recently heard of a deaf-blind, teen-aged girl from Mexico. She came to this country a couple years ago with no schooling or formal training. She'd participated in many of the major household chores, but her mobility was strictly limited to the length of someone else's arm. After only a year of mobility, she can run across a crowded high school quad without mishap - a feat commonly considered impossible for a blind person, let alone a deaf-blind person. It is never too late to start. XIV. IMPORTANT FACTORS IN HELPING VISUALLY IMPAIRED CHILDREN GROW - Much the Same as for Sighted Children. A. I don't intend for the following list of points to be overwhelming or confusing. If you can just live by the following two points, everything else will fall neatly into place. 1. Kids are kids, blind or sighted; treat them the same. This idea flies in the face of things you may have heard about differences between blind and sighted kids - differences in development, the achievement of developmental milestones, different learning modalities, accommodation needs, and so on. Heck! Parents of blind kids are told all the time "do this," "don't do that," ... There's even research to support some of these ideas - some of it pretty good. You could even construe this whole discussion as a list of do's and don'ts. But, all that is, for all practical purposes, immaterial when we simply bare in mind that people tend to rise to what is expected of them. If we think of our blind students and children the same way as we think of sighted kids, holding them to the same standards of performance and beholding them with the same honor and respect, then blind kids will tend to achieve as expected. Perhaps the biggest handicap of sight is that it tends to cloud the mind on this issue - causing the perception of more schisms and distinctions between the sighted and blind than there really are. 2. Remember that your child is every bit as important as any other child. Her place in the world, his needs and aspirations, are every bit as important as any other. His significance is in no way diminished by his blindness. If you know this, your child will know it also, and he or she will be the stronger for it. 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. What you do or fail to do WILL affect long term development. "Life is not a rehearsal." It does NOT all magically come together for children at 18, but very gradually by each step we take or fail to take along the way. Often have I seen parents and students come to this realization when the child hits junior high or high school and can't read because school work was not emphasized, or she can't leave the house on his own because of over protection, or can't tie her shoes or organize her own backpack because it was always done for her. The time to take care of these things is now, not later. Later has a way of coming too late. C. Think Beyond Your Vision 1. Vision is not our only sense. 2. We as humans tend to believe that our way of doing things is the best or only way. Consequently, sighted people think that using sight is the only way to function most effectively. Since they use sight for everything, they naturally can't imagine how anything could be done without sight. 3. Do not think of sight as the primary attribute that enables a person to function? It is not. 4. The primary attribute that enables functioning is not sight, but responsibility. 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. The rest of the body works just fine - hands, arms, legs, and especially the brain. The eyes constitute only a very small portion of the body. Do not think that if a child is blind or visually impaired, he can't perform other functions. All the eyes do is see. They don't do anything magical to enable the rest of the body to function. E. The Brain Must Have Practice To Compensate for Disability. 1. The sense organs stay the same (ears, nose, skin), but the brain modifies itself so that information that it receives from the sense organs is processed more thoroughly ACCORDING TO NEED. This process of brain development occurs through practice, NOT AUTOMATICALLY. 2. Because vision is often the easiest way to gain the most information, the brain optimizes its receptivity to visual input. In a sense, neurologically, it comes to "prefer" visual input. That's why everyone likes vision so much. But, when vision is reduced or absent, the brain can be taught to reorganize itself to maximize its receptivity to alternative sensory inputs. 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 AND EXPERIENCE. The brain really wants to do it because it craves input, but it MUST be shown how. F. Make the Environment Accessible - Modifications are sometimes necessary so that blind children may know the same things about their environment that sighted children know. Mostly, these involve putting everything in Braille, which is what blind people read. Blind children should also be exposed to pictures and illustrations through tactile drawings. G. "Low vision" is not the same as "blindness" and should not be thought of or treated as such. 1. A child with low vision IS NOT BLIND. 2. There is a huge difference between a blind child and one with, for example, 20stbledjj vision. H. Facilitate Stimulation That Has Meaning - Young blind children must touch what they hear, or if this is impossible, they must have it explained. For example, show blind children how you cook dinner or make repairs on the car or house by letting them touch the tools and implements and examine what you are doing. Likewise, low vision kids must be allowed and encouraged to see and otherwise experience their environment. It may be critical for them to observe closely with good lighting. I. Facilitate Intellectual Development, especially Language. 1. The visually impaired can learn some things through words (reading or listening) 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. Thus, reading to children will facilitate intellectual growth. 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. As important as language is, one should not use words to replace actual experience. The blind child must interact very physically with his environment. It is much better to climb a tree than to have it explained through words. 7. A visually impaired person must be really creative and clever to figure out how to do things without vision in a sighted world. Good problem solving ability can compensate for the lack of visual information. J. Encourage and Facilitate Physical Exploration - Those who cannot see how the world is structured MUST learn its structure by direct, physical experience. This means a lot of exploration - far more than you might expect or wish of a sighted child. This is absolutely vital. I was once saddened and surprised to find, for example, that one of my students did not know what a tree looked like. His only experience with a tree was touching its trunk. He had never been encouraged to climb one, so he had no idea what a tree was like beyond the 4 or 5 feet that he could reach. (And yes, there is nothing about vision that magically enables or disables a person from being able to climb a tree.) There is no reason why this or any other blind child should be set further apart from other children by lack of knowledge about the world. The primary barrier, though, is not blindness, but lack of experience. 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 - "go to your room," or "go sit in the corner," or "you're grounded." 2. We often limit the movements and freedoms of visually impaired kids in the same ways often used to punish sighted kids, but we call it "protection" instead - "you can't go outside now; there's no one to watch you," or "you can't play with the other kids; you might get hurt." We say they can't climb, run, play ball, roughhouse, or whatever out of a feeling that we are "protecting" them. What are we protecting them from? Really, we're just protecting ourselves from our own inability to cope. Keep in mind that what we call "protection" may really be punishment for a wrong never committed. It is a punishment in that it denies, without good reason, freedoms of movement that "all the other kids" are allowed to have. L. Allow your children the freedom to get hurt. 1. Getting hurt is simply a critical part of growing up for any child. It is even more so for visually impaired kids, because they tend to learn best from direct experience. 2. When the flesh is not strengthened by trial and experience, the spirit weakens. Wounds of the flesh heal more easily and completely than ailments of the spirit. M. Encourage lots of activities with the hands such as puzzles, hand toys or games, or other activities that require fine hand movements. 1. Remember, blind children do not usually draw, print, or color. Much dexterity is developed through these activities, so they should be replaced. If you don't believe me, then just wait until your blind child tries to learn to tie his shoes, and you'll wish he had more dexterity. He'll have difficulty, not because he's blind, but because he did not have a lot of the same experiences using his hands as most other children. 2. There's no need to clutter the environment with toys that make noise. Toys that make use of the mind and body are best. 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. How often do you misplace your car keys and spend 5 or 10 minutes looking around for them? A visually impaired person might spend hours looking for a misplaced item if it isn't where they usually put it. I once misplaced a stapler and was never able to find it. It was sitting in plain view, but I'd forgotten where I'd put it. It took a sighted friend 2 minutes to locate. (Incidentally, over the course of our friendship, I've located dozens of lost items for him that he could not find, simply by knowing how and where to search most effectively.) It is very rare that I need someone else to search for my lost items. 2. Make the child keep his or her own room clean and organized. Don't do it for them; you'll be doing them no favors. Also, if they want a toy, don't pander to their every need, but make them go get it. They must learn to put things where they belong and to remember where that is. Learning this will make life so much easier for them. It'll make life easier for you, too, because your kids will learn to put things away. Wouldn't that be nice? O. Discipline should be rendered no differently to a blind child than to a sighted child. If "sparing the rod" spoils a sighted child, it will spoil a blind child just as quickly, but with even worse repercussions. 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. It teaches them to take responsibility for their own functioning, rather than trying to delegate that responsibility to others. Life will ultimately hold your child and only your child responsible for his or her functioning. 3. Pity is a visually impaired child's worst enemy. It will only hamper and can never facilitate growth. 4. Developmental considerations. a. Tips for feeding: (1) It should not be necessary to feed your child past the age of 3 or 4. Even if he makes a dreadful mess, this is normal and should be expected. Initially, this should be tolerated, but in time, should not be allowed. (2) When using silverware, a blind child may use the shape of the handle primarily to know which way the bowl of the spoon, the tines of a fork, and the sharp edge of a knife are facing. If the handle is round or beveled in such a way that any way the silverware is held seems to be the same, it may be difficult for a young blind child to learn to use them. You can't pick-up a spoonful of food if the bowl of the spoon is up-side-down. Similarly, you can't cut with the dull edge of a knife, and food will keep sliding off the fork if the tines are pointing down instead of up. When teaching a blind child to feed herself, use silverware with handles that make clear how the silverware is oriented. If you can close your eyes and use the silverware to pick up food, then that silverware is probably okay for the child. b. Tips for dressing: (1) A child should be dressing himself by the age of 6 or 7, though shoe tying may take a few years longer. (2) There is absolutely nothing to prevent a blind child from being able to put on his or her own clothes. Practice is the key here, and that can't happen if it's done for them all the time. (3) Clothes should either be neutral colors, should be prematched on hangers, or should be coded with tags or buttons that can be matched by touch for colors. This enables the blind child to dress independently, as she will have to when she grows up. (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 can and should give help - one who is empowered with a wealth of abilities and gifts that are worth sharing. It's easy to get caught in the trap thinking of all ways our child may need the help of others. Again, it is not a matter of what people have, but how they use what they have. One of the most common traps involves the recruitment of sighted siblings (younger or older) as caretakers. We sometimes expect that the sibling should somehow be responsible for their blind sibling to drive, to read, to look after. This trap neatly kills two birds with one stone. Not only does it generally cause animosity among the siblings, but it is a great way to make the blind sibling become less capable than others. R. Ensure Normal Social Development - From the beginning, blind children must learn to function in a world of the sighted. They should have sighted friends and participate broadly in sighted activities. If you fear that this will not be "fair" to your child, you may be right at times, but dwelling on this introduces negativity into your child's growth. Work it out; get rid of it. Your child must learn how to function in a world that often isn't fair to them or to any of us. It is unfair to me that all of my classmates can drive around, and read, and do all that stuff. But, it isn't fair to them that my intelligence enables me to grasp concepts much faster and remember material much easier and longer than they often can, or that I can get most of my paperwork done while traveling to and from work. Who is really at a disadvantage? S. Honor the Child's Current Abilities While Holding the Highest Expectations for Achievement - It is not enough to love what our children are; we must also love and promote what they can become. This is for their sake. T. Do Not Relinquish Your Child's Development to Professionals - Children benefit when parents and professionals work closely together, not separately. 1. Professionals usually have good intentions, but their efforts will be intensified with your active interest and involvement. 2. School districts and other public agencies often prioritize fiscal management (money) over human growth. XV. RESPONSIBILITY OF THE SCHOOL DISTRICT - The law says rather explicitly that your child has a right to fully access all areas of the school curriculum without restriction. This is called Free and Appropriate Education (FAPE), and officials will often call it "an offer of FAPE". Support specialists must be in place to ensure that this happens. However, this doesn't usually happen automatically. It takes knowledgeable advocates for the child to ensure that this happens. This is a quick guide to help you design an effective school program to give the best to your child, upholding his right to become everything he can, and fully promoting his development. It will also help you to determine any short-comings that might exist in the program. Don't just assume this is happening. District officials often have good intentions, but often have their hands full with money management issues, and issues concerning normal education. They are not necessarily experts in human growth or blindness. Please, consider the following guide to be general. Exceptions are always made for every case, but be sure you understand the exceptions being made in your child's case. Have these stated to you very up-front. These points generally assume that there are no additional involvements other than blindness. Additional involvements are covered in C and E of this section. A. Support and specialized personnel: The following are support specialists, instructors, and aides, and services, that your child should have access to. I would normally put this section last, but I will make mention of some of these personnel throughout remaining discussion. 1. Classroom teacher: Amusingly and tragically, this is the most important professional in your child's schooling and the one most often overlooked. Your blind child should have full access to a regular education classroom teacher just like everyone else. He should spend the majority of his time there. Your child is a child first who needs to learn like everyone else, and classroom teachers are trained to teach. They do not need a Special Ed background to teach a blind kid. They just need a little common sense and some support to make sure that all materials are available to the blind kid in Braille or large print. If the materials are available, then more than half the battle is won. 2. Teacher of the Visually Impaired (TVI): The TVI is responsible for ensuring that the blind child can participate fully in all areas of the regular curriculum. This means ensure a complete program of Braille instruction which can't be done properly in less than one hour per day of direct service, 3 per week for low vision kids depending on severity. This also means seeing that materials are transcribed into Braille, enlarged, or otherwise appropriately adapted. The TVI should also provide and/or supervise specialized instruction in Braille or magnified print. Though the regular ed teacher is still responsible for teaching the child how to read and write, the TVI ensures that the child knows the Braille code and Braille formatting so that instruction from the regular ed teacher makes sense. The TVI also addresses any instruction needed to help low vision kids read and write using magnified print. This usually requires some extra instruction. 3. Orientation and Mobility (O&M) Specialist: Orientation and Mobility is that profession intended to help blind people get around safely and competently without reliance on others. The O&M Specialist is an instructor responsible for ensuring that the blind child can access all aspects of school functioning that are movement related or related to spatial concepts. They are traditionally known for teaching cane travel, but their responsibilities range far beyond this. These include being able to get to and from school, being able to get around the school, participating productively in play activities including recess and extracurricular, helping the child to manage school related skills of daily living such as acquiring and dealing with lunch, and ensuring that the child can travel competently in all school related community activities including field trips and other community outings. Amount of time can vary widely among students. O&M Specialists might also address activities of daily living such as keeping track of things, shoe tying, and dressing. In general, no less than 1.5 hours of direct service would be suitable for totally blind kids through elementary school, no less than 2 per week for older kids doing community travel. 4. The Braille Transcriber: This professional is essential to a sound V.I. program, but is too often overlooked. This is the person who transcribes materials into Braille or large print. She will do graphs, math and science, or whatever is needed. This should not fall to any other person, as Braille transcription is a specialty unto itself. It should not be presumed that "just anyone who knows Braille can do it." It takes specialized skill and training to render materials effectively for use by the blind. There are many issues related to Braille formatting, tactile graphics, and print enlargement that even TVI'S don't know. 5. The Adaptive P.E. teacher (APE): APE is a P.E. program tailored to address specific needs of disabled kids who either can't participate in a regular P.E. program or who need some form of adaptation or modification to do so. Usually these activities are geared for orthopedic, health, or cognitive impairments. Since blindness falls these categories, APE teachers often have not received training in activities "suitable" for the blind. Consequently, in my experience as both blind child and educator, they have little more idea how to include a blind child than anyone else. Nonetheless, blind kids are often erroneously placed in APE classes, because they are "safe" and "more appropriate." An astute educational programmer will at least consider a regular ed placement for P.E. with consultation and support as needed from the O&M and APE specialists. 6. Full Inclusion Facilitator: The inclusion facilitator helps to identify and address gaps in the educational program. He will assist in advising or supervising adaptations or modifications to help the child participate. Usually, their training focuses on severely or multiply involved kids but can be useful in blindness programming. For example, the inclusion facilitator may help to in-service staff or prepare kids for a blind kid coming into a class or school. This facilitator might also help to address issues such as making friends on the playground, participation in group activities, and such. 7. Resource Specialist (RSP): This teacher provides a little extra help to kids who need a more focused setting, or one on one instruction. Again, they often work with more severely involved kids, but a blind child may need a little extra help in specific areas such as math or science. A low vision student may need some extra attention with reading or writing tasks. 8. Assistive Technology (AT) Specialist: This is a person who addresses whether technology is necessary to help the child access the curriculum. Once again, their training does not usually emphasize blindness, but AT needs are usually present for the blind. Beeping balls and targets may be needed for P.E., refreshable Braille note takers may be necessary for class participation, screen access software will be necessary for any computer access, CCTV'S are often needed by low vision kids at home and school, and so forth. An AT evaluation must be a part of every triennial I.E.P. 9. Temporary Support Assistant (TSA) sometimes erroneously referred to as the "fulltime aide": This paraprofessional is intended to support the teachers in adapting materials, sometimes reinforcing Braille, and to act as a stop-gap measure in case materials aren't readily available by reading materials on-the-spot, or assisting the student in the beginning of learning a new campus. The TSA is NOT intended to hover over the student like a watch dog or flit around the student like a mother hen. The TSA is NEVER supposed to be instituted to "ensure safety on the playground," or to "keep an eye on the student," or to help the teacher teach. The teacher teaches, the TSA supports. An effective TSA program will find the TSA keeping a fair distance from the student and acting primarily as a support to the teacher. A TSA whose support is too heavy or who coddles the student, will impede student progress at all levels. 10. The Rehabilitation Counselor or Teacher: This professional handles transitioning the student from high school to college, trade school, or the work place. It is the responsibility of this counselor to help the student develop toward a vocation or career. Literally, there duty is to "get 'em in a job." To this end, they will fund equipment, services, and even transportation to facilitate the student's success in college or job placement. A transition plan involving the rehab counselor should be discussed by the age of 14, and must be in place by the age of 16. 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 and school functions. Your child's needs are NO LESS IMPORTANT than those of other children. 1. Academics: all books, handouts, and other written or presented materials MUST be provided in a format that your child can use comfortably on time (Braille or color enlargements). a. Pull out and mainstreaming or inclusion: The blind child is entitled to be educated in the "least restrictive environment." Blind children without additional involvements should spend at least half their time in regular classes. Neighborhood or home schools are preferable, and your child does have a right to this. They should not spend most or all the day in special day classes (SDC'S) or resource rooms (RSP'S) or even V.I. classrooms. They should not receive less than 1 hour per day of direct Braille instruction during elementary school, 3 hours per week for low vision kids. It is sensible for K-3rd grade to have more specialized instruction and pull out from regular class, but they should still consider their regular class to be their "home room" or "primary class." Pull out should not occur more than half of each day for younger kids. By 6th grade, pull out should be reduced to no more than an hour a day. By high school, pull out should only occur as needed. A child may need to give up an elective to receive additional instruction in things like computers and assistive technology, special help with certain subjects that can incur troublesome access issues such as math, science, or athletics and P.E., or mobility services. b. Curriculum programming: The blind child is entitled to equal educational opportunities and equal access to the curriculum. Blind students should be doing most of the same materials as the other kids in an adapted form where necessary. Expectations and standards should not be lowered to accommodate blind students. Special Braille curricula may be used in conjunction with (but not instead of) materials from the regular curriculum. ALL materials MUST be available AT ALL TIMES in Braille or large print, or audio if all other avenues are totally exhausted. All pictures and illustrations must be RAISED or enlarged IN COLOR. Delays in providing this material should be minimal and not occur regularly. For low vision kids, suitable magnification equipment such as a CCTV must be available in the classroom, and proper instruction on how to use it must be provided. 2. Physical Education, Athletics, and Recreation: a. The P.E. program: The blind child has a right to participate fully in a regular P.E. program with adaptations and modifications as needed. Audible balls and targets, rules modifications, and other supports can be put in place to enable the blind child to participate. There should be no restriction on participation. A blind child cannot be denied access to any school related recreational program including extracurricular programs. Supports must be in place to facilitate productive participation. b. Adaptive P.E. (APE) programs are available. Blind kids often end up in these. These are programs that emphasize a special curriculum that is supposed to be accessed more easily by students with disabilities. They are usually slow paced and less competitive, with a greater emphasis on safety. It should not be assumed, however, that the APE instructor has any special knowledge about working with blind kids. They may be just as unaware of how to include blind kids as anyone else. They do not necessarily know anything special about facilitating athletic development in blind kids. c. Recess and lunch: The blind child should fully participate in play. Many schools encourage (directly or indirectly) blind children to sit on the sidelines so they don't get hurt. Blind children should be on the playground playing actively with the other kids. If they're just sitting on the planter or standing against the fence, someone's not doing their job. 3. Special accommodations: There are specific accommodations that your child is entitled to which may facilitate her functioning. a. Preferential seating: Blind children may gain better access to the curriculum from the front of the classroom, and this placement can be determined by the I.E.P. or 504 plan. A child with low vision may need front row seating in order to see the board or other visual presented material. A blind child may benefit from front row seating by being able to touch manipulatives that the teacher may be showing to the class. b. Time-and-a-half/double time: Children with reading difficulties are allowed to take extra time with assignments and tests without penalty. Large print users are allowed time-and-a-half, while Braille users are allowed double time. While this is a legal mandate, I encourage you to push for your kids to be able to complete material on time, or near time. While educational institutions can be flexible to the time issues of its students, the world of employment will not be. An employer will not pay and may not be accepting for someone to take twice as long to complete tasks. Blind students should be able to complete their assignments and tests within a conventional time framework by their junior year in high school. If not, then they should take it upon themselves to practice this skill in college. Delayed performance will not fly in the work world. c. Reduced assignments: Reduced or modified assignments may be appropriate depending on the visual nature and utility of the assignment. Highly graphical material such as chemistry lab or optical physics may be adjusted. For example, the student could be assigned a research project instead or some other alternative assignment. There are also assignments that are just not conducive to Braille such as long division, matricies, geometric renderings, and diagramming sentences. These can really be quite a drag and very tedious to do on a Brailler, leading a young student to a demoralized state. Assignments that are highly repetitive (do problems 1-30 of the same thing), may be reduced in good conscience, as long as the student can clearly demonstrate that they know the material. C. Special circumstances for multiply involved kids. In general, multiply involved kids need more services to enable them to access the curriculum. 1. Additional professionals and their special relationships to blind kids a. Occupational therapist (OT): This person works to develop fine motor skills related to educational functioning such as writing, handling lunch materials, cane use, and reading and writing of Braille. A simple way of thinking about it is to say that they assist in issues regarding the use of the hands, though they extend into other areas. If a child has a hard time with Braille because of issues with the hands, understand that the Teacher of the Visually Impaired may not be trained to address these anomalies. The OT should be called upon to provide guidance to the TVI for the fine motor development necessary for Braille. OT'S will often feel unqualified for this, but if the TVI can properly explain and demonstrate proper Braille writing and reading, the OT can see how to provide assistance. b. Physical Therapist (PT): This person works with gross motor abilities like play, walking, and manipulating large objects such as a chair or door. This person monitors the long term function of assistive equipment such as wheelchairs, walkers, support canes, and crushes. Where balance issues are involved, they may help the Orientation and Mobility instructor with gait issues, stairs, and handling of the cane. c. Speech and Language Therapist: They handle issues related to speaking, language development, sentence formation, and general use of language called "pragmatics." They do not just handle articulation problems (your child can't talk clearly), but may actually handle language formation. This area is often the most underrated. With the child has a communication problem, half-an-hour to an hour a week won't usually produce a discernable long term difference. Communication issues are often best handled with very intense service given on a daily basis, then reduced over a few years with regular follow-ups. d. Deaf and Hard of Hearing Specialist (DHH): Handles issues related to hearing impairments. These may include signing, checking hearing aids, and classroom issues of curriculum access. In the case of a blind child, this specialist should be closely connected to the Teacher of the Visually Impaired. e. School Psychologist: The psychologist generally follows the psychological development of students where there may be concern. They usually show up about every 3 years to provide input and test results. The psychologist may be useful in helping to design a program of specialists addressing different areas of need. The psychologist MUST provide testing that is adapted and appropriate for the visually impaired student. Testing must be done with consultation from a blindness professional such as a TVI or testing is invalid. f. School nurse: This person can assist with any issues related to health impairments or medical fragility. It is often the nurse who first screens for visual impairment and makes the first referral. g. Assistive and Augmentative Communication Specialist (AAC): Oversees use of equipment necessary to assist student's in communicating with others. These may be simple devices such as an object calendar, or more complex devices involving switches or computers that talk. They don't usually provide direct service; they focus on training others to facilitate the every day use of the equipment. 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.): An educational plan must be individualized for your child no less than once or twice a year depending on the child's age. Such a program must outline all goals and objectives related to your child's educational development. It also spells out which specialists are to be providing service and how much time is to be spent providing service. A minimum of three people MUST be officially invited (parent or guardian, teacher, administrator) to discuss and agree upon the plan. Additional people may be invited at the parent's discretion. A parent has the right to require or refuse any goal or objective but should consider the professional reasoning behind proposed objectives. Parents also have the right to change any portion of any plan at any time or to call a meeting at any time. A parent SHOULD attend the plan meeting and should also invite the child to attend when old enough. Although the school district is not responsible for ensuring optimal progress (only measurable progress), they are unequivocally responsible for providing ACCESS TO EVERY ASPECT OF THE CURRICULUM without restriction. Lack of personnel cannot be used as a reason for denial of services. School districts must demonstrate a "good faith effort" to provide appropriate, least restrictive services or be found "out of compliance." 1. "Zero Reject": Public schools must seek out and provide necessary educational services to all handicapped children from birth to 22 years. No educational service can be denied because of expense, and parents cannot be held responsible for educational expenses (Free and Appropriate Public Education - FAPE). All services must be rendered in an equal opportunity manner - one which optimizes educational achievement. For example, all printed materials must be provided in whatever medium is found most useful by the child including Braille, large print, readers, taped materials, etc. a. Nondiscriminatory Testing and Evaluation: All tests (E.G., psychological, intelligence, achievement) must be provided in a readable format as preferred by parents and children (e.g., orally, braille, large print or other magnification). b. Least Restrictive Environment (LRE): Wherever possible, handicapped children must be placed with kids who are not considered handicapped. They must be allowed the maximum possible freedom similar to other children of the same chronological or mental age. The placement must be well integrated with nonhandicapped children and respectful of their personal needs and abilities. The placement must not be physically or psychologically harmful or confining and must be agreed upon to facilitate the child's overall development. 2. Notification and Procedural Rights for Parents (due process and judicial hearing): Parents must be informed of all decisions made regarding the child and of all services being delivered to the child. Parents have the right to a fair hearing by an objective party. This means that parents can be represented by an attorney to ensure that proper service is being provided in the child's best interest. Parents must be reimbursed legal fees for cases found in their favor. Parents also have the right to have an advocate present at any time. 3. Right to Public Participation: Your child has the right to participate in any activity that is open to the general public. 4. You may contact the State Board of Special Education or parent groups (section XVII-A) for help in managing or resolving conflicts with school districts. You may contact the attorney general's office for advise and written material concerning the following legislation: a. PL 94-142 - the education for all handicapped children act of 1975: guarantees the rights of handicapped children to education; zero reject, nondiscriminatory evaluation, I.E.P. (individualized education program), LRE (least restrictive environment), due process. b. Handicapped Children's Protection Act of 1986: amendment to PL 94-142, guarantees legal fees to parents who win cases. c. PL 99-457 - education of the handicapped act amendments of 1986: Free and appropriate public education for 3-5 year olds; support for 0-2 year olds; I.F.S.P. (individual family services plan); and I.T.P.'s (individualized transition plan) emphasizing improvement of vocational and life skills. d. PL 101-336 - Americans with Disabilities Act of 1990 (ADA): mandates equal acceptance and accessibility of the disabled to all places and facilities that are open to the general public; extends civil rights protection to persons with disabilities in private sector employment, all public services, public accommodations, transportation, and telecommunication. e. PL 101-476 - Individuals with Disabilities Education Act of 1990 (IDEA): Extends educational services to include autism and traumatic brain injury; introduces the I.T.P. (individualized transition program) which extends rehabilitative and social work services to adolescents by age 16 or as early as 14. E. Things to watch out for: 1. Don't let your child be shoved into a special day class for most of the day. It is not uncommon for all the blind kids to be funneled to a single classroom or two out of convenience for everyone involved, except the child. Be sure that your child is receiving ample (at least half) time in regular classes doing regular curriculum, unless there are extenuating circumstances that are made clear to you. The child should be doing the homework that the regular kids are doing, and participating in the same assignments. 2. The aid should not be assigned to watch over your child. The aid is mainly there to support the classroom teacher and adapt materials under supervision. The aid should not be policing at recess and should not be teaching the student instead of the teacher. 3. Blind students read Braille; they have to have Braille to read. Do not let your kids get stuck with lots of books or materials on tape; they need them in Braille. Don't let your kid get pulled out of class for every test to be read to her; she needs the tests in Braille. Don't let your kid get stuck with electronic note taking devices such as Braille N Speaks, PacMates, or Voiceationotes that just talk but have no Braille output. These devices are often used because they're cheap; they have little utility to the Braille learner nowadays. Each of these devices has a Braille alternative that is thrice as expensive, but ten times more useful. Would you let your sighted child come home without printed materials? What would happen if the schools suddenly sent sighted kids home only with books on tape? There'd be a riot! I'm not saying that there isn't a good place for books on tape, but never in place of Braille, ever. 4. Do not let them keep your kid's cane at school. Do not let anyone tell you that the cane can't be used at home. That's your choice, and it's the right one. The cane is an aid to seeing, and should NEVER be restricted by circumstance or locale. It is equivalent to the school sending your child home in a blindfold and saying, "only we're competent to teach your child how to see properly, so please don't let her see while she's at home. You might make a mistake. We don't want her to pick up bad habits, and we don't want to be liable." 5. Be careful that your child isn't socially promoted from grade to grade without learning the skills to function properly at grade level. A blind child without other involvements should function at grade level. If he's not, try holding him a year; give him a chance to catch up. He will not catch up if pushed through the grades before he's ready. He will always lag behind. By the same token, don't be in a hurry to start your child in Kindergarten before he's ready. I've seen the woeful consequences of this mistake too often. It's far better to start him at 6 or even 7 than to force him to play catch for the rest of his school life and my experience says he never will. 6. Try providing (or having a specialist provide) an in-service to your child's class or school about blindness (as discussed in section VI-E-2-c of this document). This isn't to call attention to your child, but to answer questions in advance that all the kids and teachers will have. The presentation should focus on how the child does things to succeed, not how the child needs help or special treatment. Just as everyone needs tools to succeed - pencils, books, calculators - so the blind child needs her tools likewise - Brailler, cane, Braille books, talking computer. 7. Services should not be provided strictly in a "consult" model. Though collaboration among professionals is good, it is not intended to replace direct service. This is often done to satisfy minimal state or federal requirements for service delivery not necessarily in the best interest of the child. 8. The term "retardation" or "cognitive delay" should never be applied to your child by anyone, no matter how many initials after their name, until all other avenues of perception and learning have been addressed and exhausted. In general, it is poor developmental practice to apply this label before the age of 6 years. 9. Do not allow your visually impaired child to be placed in a class of orthopedically or language impaired students, even if he's designated with these impairments. The mistake made here is the assumption that a class for the language impaired will facilitate language development. Blind kids especially need to hear language. These classrooms are often structured and taught very visually, as it is the visual modality that these kids often rely on. This doesn't help the blind kid at all. You will see regression in this model. More appropriate placements for blind kids with additional involvements are often classes for the learning disabled, not classrooms for the severely handicapped. 10. Do not allow admission of any psychological assessment material into your student's file unless the testing was done in conjunction with a blindness professional such as a TVI and properly adapted for use by the visually impaired. You should sign the permission to assessment form only if this condition is met. Test materials should be rendered in Braille or tactile, not just read. XVI. SOME QUICK AND EASY HELPFUL HINTS A. Eliminate the word "guide" from your vocabulary with your child. Blind people do not need to rely on the guidance or leadership of others, and they do not need to climb on the backs of those with eyes in order to take flight. If you want to take your child by the hand because he's a child, go right ahead, but don't do it because he's blind, and don't think of it as "guiding." If it happens that your child needs to hold on to someone in order to keep better track of them, think of that person as a "partner" not a "guide," and try to keep even this to a minimum. The child won't learn to keep up if he is never called upon to do so. B. Make your child responsible for household chores just as her siblings are or just as you were when you were a kid. With help from the V.I. or mobility instructor if needed, label or mark all appliances as necessary for the child to be able to use them without assistance. (You can engrave tactile marks using any sharp implement, or use adhesive felt or rubber pads from the hardware store.) Rinsing or washing dishes, cleaning the floors or furniture, setting and clearing the table, picking up after herself, carrying in the groceries, helping with the yard, helping to prepare meals or snacks, doing their own laundry when older, - all these things help a person grow. Try to keep your dishes and groceries somewhat organized so the child has good modeling for herself, and so she can expect to find things where they belong. If she puts the groceries away in consistent places, then she'll know where to go to look for them when she needs them. C. Make sure you have plenty of Braille books around when the child is very young. When he's older, make sure your child does most of his reading and homework in Braille. Tapes are okay, but if the child is sitting all day listening to tapes, there's something wrong. True literacy is through Braille, not tapes. D. Enter the child into a community program such as scouts, a league sport, children's club, or something. You could also try volunteering your child in community service projects or enrolling him in a formal program to serve as Child Mentor or Big Brother. Your school, Chamber of Commerce, or library will have information about what's available in your community. If you meet with unwillingness, stay calm, and just remember that your child can't be denied entry into any facility or program open to the general public. Accommodations must be made. For the blind, they're usually not that big a deal. Consult with your mobility specialist for ideas. E. Be sure the child has his cane at all times and knows where it is. He may not use it everywhere; some play activities aren't conducive to having a cane. But he should not be dependent on others to fetch and carry it for him. The excuse "I forgot" should never be heard. It only means that he's not accustomed to using it. It's like saying "I forgot to open my eyes this morning." It's that important. If your young child is resistant to using a cane, carry and use one yourself (if it doesn't embarrass you). Children, even blind children, learn from modeling and love to imitate others. Trade with your child; let him use your cane. Practice finding things with it. Don't worry about "doing it the right way." A cane is just a stick used as a feeler. Just make sure he keeps it in front and on the ground. Leave the rest up to experience and advanced instruction from a qualified specialist. If your child's specialist discourages you from practicing with your child, tell the specialist to double his service hours and work with your child at home, because you want your child to have the experience. F. Eliminate the word "can't" from yours and your child's vocabulary. Anytime the word "can't" is used, the response should be "let's find a way." G. Be sure your child has at least one friend close to her age in her neighborhood. If she only plays with the other blind kids at school, that's a pretty sheltered and unrealistic situation. The child should have someone she can call a friend, someone to hang out with whenever she wants. Remember, this isn't a "helper", it's a friend. There's a difference. "Typically developing" elementary school aged blind kids are often (though not always) a year or two delayed socially and emotionally, even if very mature intellectually and physically (I was both), so don't be afraid to foster friendships with kids a year or two younger. This is often a good match. If the friend is too much older, it often become a helper relationship. This isn't a bad thing, but it shouldn't be the only thing. 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. This could be someone from church, scouts, or school whom you trust, and who's mature but still child-like. I suggest same gender, because girls have a tendency to be too nurturing, and you want a more natural interaction. Bring the kids together regularly, and arrange activities or outings, or just let them play. Your child can learn just to be a kid from this interaction. He can learn comradery with someone who'll teach 'em the ropes. Frankly, it may take a few tries before you find a good match, but once you do, a boy or girlhood comrade can make differences that no adult can make. 2. Try hiring a high school kid to be a mentor or big brother, or just a "chum" for one day a week. I got this idea from a parent who pays a neighbor kid $50 a week to take her son with Down's Syndrome out just to have fun. The kid certainly doesn't mind the money, but he has a true bond now with her son. The $50 bucks is really just a thank you. 3. Try formalized Child Mentor or Big Brother programs. You can find these through your Chamber of Commerce or local public library. I. If your child is really reluctant to grow, or learn to stand on his own two feet, explain to him that if we deny ourselves growth, then we deny ourselves all the opportunities and privileges of life. Withhold all privileges from the child until he agrees to participate in his own growth. This may sound harsh, but the consequences of not growing are much more damaging, and this method will work fairly quickly. Believe me that this will not traumatize your child, and he WILL thank you someday. Do not count on him just figuring it out on his own someday without your having to play hard ball. I can assure you that most blind kids, once they've started down the path of dependency, do not grow out of it on their own. And, the world is a very unforgiving place to an adult baby. J. Don't let your child rule you. You are the adult and responsible for your child's growth, not the other way around. A household ruled by a 7-year-old is never a pretty sight, and your friends will be talking about it behind your back. K. Use chimes or some other marking to identify your house if your child has trouble finding it. If you have a very big yard, use chimes to highlight different parts of the yard so your child can find his way around it easier. There's no reason to be lead around his own yard or neighborhood by the hand. That's demeaning, whether he knows it or not. L. A quick and easy way to play ball with your child is to put it into a spare plastic bag. Tie it very loosely around the ball, and it will make a lot of noise that your child will learn to hear and follow. You want the bag to really crackle and rustle. Trash bags are not good choices. The best are the one's you get from the grocery store or supermarket. It should be very loose. A well pumped basketball is the best choice for bouncing games. A volley ball or beach ball is good for catch. A soccer ball or utility ball is good for rolling and kicking, not so good for bouncing. Tether ball also works, but requires good practice. For this, tie the handles of the bag an inch or so on the rope above the ball so the ball is approximately centered in the bag. You may need to tie a knot in the rope here to keep the bag from sliding down. Don't let your child cheat and grab the rope or stay too close to the pole. He can learn to hit the ball properly. Start out by playing catch with it. You can start out with nerf balls or balloons. See how long your child can keep it in the air. Play with him. He will get the hang of it with practice, just as sighted kids do. If he's afraid of getting hit in the face with the ball, he needs to learn that bumps and bruises are just part of being a kid. Blind kids are often too accustomed to being treated with "kid cloves," but bumps and bruises are a part of normal childhood. Blind kids growing up healthy probably get them more than most; that just comes with the territory. I hope you can accept this, and let it happen. Believe me, it makes a child stronger. M. Let your blind child have access to efficient transportation as you would your sighted child. I suggest you consider investing that same amount of time and money into facilitating your blind child's transportation at 16 that you would your sighted child at the same age. How much time would you spend making sure your sight child was prepared to drive? - driving lessons, supervision, test preparation ... How much money would you spend on a car, insurance, gas? As a general rule I recommend that parents spring for a cell phone with a minimum plan, as this is crucial for managing transportation. They pay for any personal calls. I suggest agreeing to pay for half of their transportation expenses whether they use a cab, bus, access, or a private driver. You make the process feasible for them by paying half, which is probably no more than you'd do for your sighted kid, and it's tax deductible. Since they're paying the other half, they'll be encouraged to show responsibility in how they use their transportation. Private drivers can be hired through the high school, local colleges, or churches. You might also contact local service clubs like Lions or Elks for trustworthy people. Perhaps there are family friends willing to make a little money. You can help your child interview and choose good drivers. I recommend they pay around a dollar a mile from pick-up to drop-off. N. Some financial tips: 1. Any money that you spend to help your child access the environment is tax deductible as a medical expense including transportation to special appointments, assistive technology, even things you use to mark your appliances. 2. Any equipment used to augment vision such as a CCTV or monocular can often be paid for by medical insurance, but it's a tooth- and-nail fight. 3. The school district must pay for any equipment needed to ensure equal access to the curriculum. It must be carefully justified, but it's law. You should never need to pay for canes, monoculars, a Braille writer, books, anything school related. The school district must also pay for transportation to and from school, or reimburse you for providing it. XVII. SOME RESOURCES: Catalogs and Brochures are always available, often in alternative media such as Braille, large print, tape, computer digital, and/or on-line sites. A. Parent/Family Groups and Materials 1. California Association of Parents of the Visually Impaired (CAPVI): Joanne Claytor, (909) 945-5619. 2. National Organization of Parents of Blind Children: (410) 659-9314; speak with Barbara Cheadle 3. Institute for Families with Blind Children: mail stop 111 P.O. Box 54700 Los Angeles, CA 90054-0700 (213) 913-3455 4. Children with Visual Impairments: A Parent's Guide; Edited by M. Cay Holbrook, PhD; ISBN 0-933149-36-0. B. Books for Blind Children (large print, Braille, talking): 1. The Xavier Society for the Blind 154 E. 23rd Street New York, NY 10010 (212) 473-7800 Ask about "Funny Alphabet." 2. Children's Braille Book Club National Braille Press 88 Stephen Street Boston, MA 02115 (617) 266-6160 Ask about Twin Vision books and other series'. (Twin Vision are books written in large print and Braille so parents and children can read together.) 3. American Printing House for the Blind 1839 Frankfort Ave. P.O. Box 608 Louisville, KY 40206 (502) 895-2405 Ask about "On the Way to Literacy: Early Experiences for the Visually Impaired." 4. Seedlings: Catalog of Books P.O. Box 2395 Livonia, MI 48151-0395 (313) 427-8552 5. The Guild for the Blind 180 N. Michigan Ave., Suite 170 Chicago, IL 60601 (312) 236-8569 Ask about "The Teddy Bear Series", "The Buddy Series", "The Owl Series", and "Brailleables." 6. Rabbit Ears P.O. Box 2284 S. Burlington, VT 05407-2284 (802) 863-0222 They sell excellent children's books on tape with sound effects, various voices, and music. 7. American Action Fund 1800 Johnson Street Baltimore, MD 21230 (410) 659-9314 Ask about books for preschoolers. 8. Braille Institute Library (800) 808-2555 Again, ask about Twin Vision books. 9. National Braille Press: (617) 266-6160 10. National Braille Association (NBA): (585) 427-8260 C. Adaptive Equipment and Recreation: (canes, low vision devices, sports and recreational, independent living aids) 1. United States Association of Blind Athletes (USABA): (719) 630-0422, www.usaba.org 2. NFB Children's Cane Bank: 510-846608; (Rigid and collapsible canes are available free to blind children. They just need to know the height of the child. When the child outgrows the cane, the cane can be exchanged for another.) 3. California Canes: (760) 956-5265 4. Brian Klinesteker: (805) 943-9866, fax: (800) 331-6123 Leather cane holsters 5. American Printing House for the Blind 1839 Frankfort Ave. P.O. Box 608 Louisville, KY 40206 (502) 895-2405 6. National Materials Center for the Blind: (410) 659-9314; (canes, living aids, information especially on adaptive computer technology) 7. Beyond Sight: (303) 795-6455; (information, adaptive equipment with emphasis on computers) 8. Sport Time: (800) 444-5700; (sports and recreation) 9. Maxy-aids: (800) 522-6294 10. Flaghouse Inc.: (800) 793-7900 11. L.S.&S.: (800) 468-4789 D. Organizations Made Up of Blind People - Blindness Groups, Scholarships, Adaptive Materials and Equipment, Advocacy, Information 1. American Council of the Blind (ACB): a. National Office: (800) 424-8666 b. California Office (CCB): (800) 221-6359 2. National Federation of the Blind (NFB): a. National Office: (410) 659-9314 b. California Office: (510) 846-6086 E. Organizations for the Blind - Vocational Support, General Information 1. American Foundation for the Blind (AFB): (800) 232-5463; (scholarships, information) 2. Braille Institute (independent living skills training, recreation, social involvement, Braille and taped library services, adaptive materials and equipment including canes and low vision aids, equipment subsidy grants) a. Anaheim: (714) 821-5000 b. Los Angeles: (213) 663-1111 or (800) #bra-ille 3. Foundation for the Jr. Blind: (800) 352-2290; (independent living skills training, recreation, social involvement) 4. Recordings for the Blind and Dyslexic: (800) 221-4792; (scholarships, taped books) 5. Light House, Inc.: (800) 334-5497, (800) 453-4923; (information, equipment) F. Hot-Lines 1. Blind Ambitions: (714) 502-8142 2. New Visions: (714) 520-9663 3. Job Opportunities for the Blind: (800) 638-7518 G. Other Resource Guides 1. Blind Children's Learning Center (BCLC): (714) 573-8888, "www.blindkids.org", Ask for Elayne Strong's resource guide for parents. 2. Blind Childrens Center: (800) 222-3567, "www.blindchildrenscenter.org", Their web site is full of useful links. 3. "www.wayfinding.org" is put up by the Institute of Innovative Blind Navigation, and it is an excellent resource for understanding and locating services.