American Action Fund for Blind Children and Adults
Future Reflections Convention 2018 NOPBC CONFERENCE
by Denise Mackenstadt
Introduction by Kim Cunningham: To deliver our keynote address we are pleased and honored to have Denise Mackenstadt. She's from the state of Washington, and she's actually a founding member of the NOPBC, so she's been around for twenty-five plus years. We thank Denise very much for coming here to educate us and give us her words of wisdom. Here's Denise.
According to the Merriam-Webster Dictionary, empowerment is "the act or action of empowering someone or something: the grant of the power, right, or authority to perform various acts or duties, or the state of being empowered to do something: the power, right, or authority to do something." By empowering ourselves as parents we will empower our children to live the lives they want. Our goal as parents is to give our children the tools for a productive and self-fulfilling adulthood.
In 1954 a young family had a single son. He began to have severe headaches. He was very ill. After many surgeries to insert shunts to alleviate pressure from excess brain fluid, he was left blind.
His parents were devastated. As it happens with many families of newly disabled children, his mother decided to learn as much as she could about how best to help her child become well and get the services he needed. This happened in the era before special education laws that guarantee a free and appropriate public education (FAPE) for special-needs children. It happened before the passage of the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). This mother decided to use her power as a parent. She learned Braille. The family moved to a school district where their son could attend a public school close by, without having to spend hours traveling to a day school for the blind. This mother continued to fight for good medical treatment. She fought for good services for her child.
Her efforts came to fruition when her son graduated high school and continued on to earn three college degrees. She lived to see him become a successful professional in rehabilitation, education, and civil rights with a loving marriage and two children. Today this man is my own husband of forty-five years. We have two grown children and two grandchildren. This is the result of a mother using her power to fight for the life of her only child.
All mothers and fathers have this powerful gift, the ability to fight for the lives of their children. There is no blueprint for raising a child, including a blind child. There are experts who will give you advice and suggestions. Many times these suggestions can become confusing and overwhelming. Blind adults in the National Federation of the Blind (NFB) will be available to help by sharing their own stories. In the end you, as parents, must make the decision to raise your child to be productive and happy.
How can you do all of this and still be supportive of your other family members? How can you manage not to become overwhelmed by the demands that professionals make of you? How do you give your blind child a full experience within and outside of the school environment?
All children, blind or sighted, deserve to have life experiences that will give them opportunities to thrive and grow into independent adults. Blind children need most of the skills that are necessary for all children. In addition, they need some specialized skills that will allow them to compete at the same level as their sighted peers. These skills include the abilities to read and write Braille, to use a long white cane to travel independently, and to use assistive technology. Aspects of these skills will be different for each individual child, depending on his or her specific needs. With the proper effort and thought, your children will achieve independence. Success is measured by the child's ability to live the life he or she wants.
Parents need skills as well. They need the skills that are common to all parents, and they need some that are unique to parenting a blind child. Today I will address skills specific to parenting a child who is blind or visually impaired.
When I refer to blindness, I will use the definition that was articulated by Dr. Kenneth Jernigan. In "A Definition of Blindness," Dr. Jernigan said, "In my way of thinking, one is blind to the extent that the individual must devise alternative techniques to do efficiently those things which he would do if he had normal vision. An individual may properly be said to be blind or a blind person when he has to devise so many alternative techniques to function efficiently that his pattern of daily living is substantially altered." This definition includes low-vision techniques and tools. These tools are substantially different from those used by individuals who have normal vision.
It may be very hard for you to use the word blind when you refer to your child who has residual vision. Visually impaired may appear to be a softer term, but it does not prevent your child from needing to learn nonvisual skills. It is important for your child to learn that it is respectable to be blind. At this conference you will see that people take pride in being part of the blind community. We want to instill that pride in your child.
A strong mindset or philosophy is the cornerstone of knowing the most important components of raising a successful blind child. Based on high expectations, this mindset is a belief in the innate capacity of all blind people, your child in particular, to live productive and happy lives. Each child has the right to reach the peak of his or her potential. When parents believe that the blind child's development should be as close as possible to that of the child's sighted peers, they build the child's potential for success.
Conventional wisdom claims that blind children necessarily develop more slowly than their sighted counterparts simply because they cannot see. Because they cannot see, conventional wisdom tells us that blind children are denied 90 percent of all learning. We in this room have all heard these theories. But loss of vision alone is not responsible for slow development. Loss of vision alone does not prevent learning. Many blind children have additional physical and intellectual disabilities that can have an impact upon learning and development. If the child has delays, parents must learn to identify the causes. With this understanding, they can begin to develop a learning environment to meet their child's specific needs.
Parents need to provide a rich learning environment at home. This environment should be multisensory and creative, providing opportunities for problem solving and critical thinking. Such a learning environment is important for all children.
As parents you must integrate your blind child into the full life of your home. Your child needs household responsibilities and the chance to participate fully in family activities. Sometimes the family is overly invested in the development of the blind child, to the detriment of the other family members. Yes, the blind child uses different techniques in order to participate in all of the family activities, but that does not limit the participation of the family as a whole.
Knowledge is power. When parents learn that their child is blind or has a severe visual impairment, their first step usually is to find out as much as possible about the child's eye condition. Then they determine the steps they need to take to help the child move ahead. Family and friends will give their love and support. The medical community shares its knowledge. Social workers make suggestions, and educators give their advice. Blind adults and other parents of blind children offer their experiences. So much information is given! What are parents to do with it all?
The first step is to know your child. The suggestions you follow have to be built around who your child is. As a parent you are the only person who can speak from your child's perspective. Take it one step at a time. When you become overwhelmed, take a moment to enjoy your family and the blind child who has entered your life. You do not have to take all of the suggestions made to you or act on them all at once. Breathe and think. For all of the advice you may be given, remember that you, your child's parents, are the real experts.
The anthropologist Margaret Mead said, "If we are to achieve a richer culture, we must weave one in which each diverse human gift will find a fitting place." Community is essential, and it is there for you when you need it. You do not have to deal with parenting a blind child on your own. Your community includes your immediate family. It includes other families of blind children that are facing the same challenges. It includes professionals whose job is to give you the best access to services for your family and your child. Importantly, the community of blind adults of the National Federation of the Blind is there to help you on this journey. Be a critical thinker and remember that you are the best judge of what is necessary for the benefit of your child. Do not become so overwhelmed by advice that you forget to follow your own instincts. Take from others what is important for you and your family.
Having a community of like-minded individuals is also important for other family members. Your family is unique from other families. Your sighted children will need to meet other siblings of blind children. They need to see that their blind brother or sister is capable and not so different from other children.
It has been said that it takes a village to raise a child. Other parents can share valuable information and support. They have had their own triumphs that they can share with you, and they may have made mistakes from which they have learned. The National Organization of Parents of Blind Children has a wealth of knowledge and support. You need like-minded individuals to help you sift through all the information you receive.
According to the Merriam-Webster Dictionary a critic is "one who expresses a reasoned opinion on any matter, especially involving a judgment of its value, truth, righteousness, beauty, or technique." Critical thinking is essential to making decisions about the tools your blind and sighted children need to grow into successful adults. These tools are acquired through a good environment for learning. This learning happens not only in the classroom. It takes place in every activity in which a child participates. This is not to dismiss what happens at school. It just means that as parents we need to give our children a well-rounded life experience. Critical thinking enables parents to make good decisions about what is best for their children.
Much of your time as a parent is involved in making sure that your children have a successful school experience. During the school year most students spend six and a half hours a day in school. School comes in many shapes and varieties. Placement options may include a residential school for the blind, a specialized day school for blind students, a center-based or resource room, a life skills program for disabled students, or a fully included placement with the support of an itinerant teacher of the visually impaired. Sociologist William G. Spady said, "All students can learn and succeed, but not all on the same day in the same way." A school placement program should be implemented according to the individual needs of the student. Unfortunately, these placements often are based only on the availability of the type of education to which each child is entitled. It is an undue burden for parents of blind children to have to know as much about the education of their child as the professionals who serve blind students. As I have said many times during this presentation remember who the experts are on the needs of your child. That is you, his or her parents.
Today and throughout this week of convention, you will be exposed to many of the tools your child needs to be a successful student. Also, look to your own children's articulation of what they need to be successful and happy. Children have insight into what is important for them to be satisfied with their school day. What happens on the playground or in the lunchroom is as important to them as what happens in the classroom. Each school staff member has an influence on a student's day.
Most blind students are in classrooms with sighted students. Blind students can feel isolated because they use techniques that are very different from those used by the other students. By being part of the National Federation of the Blind your children can associate with peers who are blind and meet blind adult role models.
Independence is the outcome we all want our children to achieve. Today you will have the opportunity to see and hear experts in many areas of skill your child will need in order to be successful. But skills alone do not make a blind person independent. Independence is defined differently for each individual. Defining what is important for an individual has to be an informed choice. Having the best environment to achieve these skills is the basis for these decisions.
In his landmark speech "The Nature of Independence," Dr. Kenneth Jernigan said, "Our independence comes from within. A slave can have keen eyesight, excellent mobility, and superb reading skills—and still be a slave. We are achieving freedom and independence in the only way that really counts—in rising self-respect, growing self-confidence, and the will and the ability to make choices. Above all, independence means having choices, and then making those choices stick."
Thank you for giving me the opportunity to bring to you my thoughts on parent empowerment. Please take advantage of all that this convention will offer. And remember also to have fun.