Parents whose children have disabilities are often reminded by others that there are famous successful people who share their child’s disability: Chris Burke who played Corky on television’s 1980’s show Life Goes On, President Franklin Roosevelt, violinist Itzhak Perlman, Ray Charles, physicist Stephen Hawking, Helen Keller, Stevie Wonder. Parents seem to be expected to believe that with hard work and lots of encouragement their children will surely achieve the same degree of celebrity as well-known personalities.
Micki has spina bifida. He walks with braces and crutches. Itzhak Perlman uses braces and crutches as a result of polio. Micki’s parents, like most of the world, get shivers of appreciation when Mr. Perlman crosses a stage, sits on a chair and plays his violin. Micki’s disability, however, never reminds his parents of Itzhak Perlman.
Micki’s mother is reminded instead of the busloads of “handicapped” kids that passed her years ago as she walked to school. Those kids were on their way to their “special” school. She still sees those “handicapped” kids’ faces in bus windows. She knows that Micki’s face would have been among them if he had been a child in her youth.
Gunn (short for Gunther) has Down syndrome. His parents admire Chris Burke who also has Down syndrome. Gunn’s parents appreciate the work and determination that contribute to Chris’ success and increase the awareness of the general public regarding people who are “differently abled”. More vivid for them than the shared disability are the remembered “disappearances” of some children from their childhood: the “mongoloid” newborn who went to an institution instead of home, the 12-year-old neighbor sent away from home because her mental retardation made her “too difficult to handle.” Gunn’s parents remember the “invisibility” forced on those children. The total recognition that Chris Burke and his family have earned stands in sharp contrast to that sad invisibility.
Families of children with all kinds of disabilities know the tug of the old world. Not far behind us is the world that saw all “handicapped” kids as very different from every other child and very much like each other. The old world put “handicapped” kids on segregated buses, sent almost all “away” or to “special” schools.
The new world of acceptance and accessibility is helping to build the foundation for our systems of care today.
Our children work to achieve their own celebrity in spite of disabilities. We parents work with them, encouraging and reinforcing, giving what we have, looking to find what our children need. Professionals (i.e., therapists, teachers, physicians, specialists of every kind) are available to team up with us and our children. The three-way partnership has helped achieve the coming apart of that old world: segregated buses are fewer now, fewer babies and children are “sent away.” Some regular buses and buildings are accessible. Services are beginning to be modified, employers are starting to be creatively adaptive, and most importantly attitudes are changing. The road to our children’s success, however, has been only slightly smoothed: it remains a rough and rocky road.
Technology has been an important contributor to the partnership of families and professionals moving along the road toward accessibility and acceptance. Technology has modified environments and helped make our children more versatile. Parents and helping professionals sometimes feel old and tired from the struggles we have won and the trials left to go. Technology, though, seems always new, always adapting, always searching for a new solution to an old problem.
Technology has often served us well by bringing the world to our children and our children out into the world. As our children are more integrated, as their horizons expand, technology becomes ever more important, playing a larger part in our lives. Aware that our understanding of technology needs to grow if our children’s access to it is to grow, parents and professionals want to know more about ever-developing equipment, software and out-come based methods.
This Guidebook is written to answer some of the questions parents ask about assistive technology that affects the lives of children and young adults with disabilities. Parents and professionals want to know about different kinds of assistive technology, what problems it can help solve, what difference technology can make in our young adults’ and children’s lives. We need to know how to choose the right equipment, how to make sure that devices are safe and effective, that we’re using them correctly. Parents are interested to know where to find the right equipment and services and how to pay for them. We need to know what to do if we are unable to get the technology our children need.
The Guidebook’s answers are intended to help families move along the road to accessibility and acceptance with the confidence that comes from knowledge. Sign posts along that road have been put up by parents and professionals who know the value of an encouraging word. Sign post number one: “There is a way.” Practical life problems that come with disability can be solved. Yankee ingenuity is a great gift, greater still when boosted by technology. Sign post number two: “Dare to dream.” Without the dream up ahead we would have stopped way back on the rough and rocky road. Professionals and parents swear that being told something couldn’t be done, inspired us to do it anyway.
Celebrity belongs to every child who travels the road from that old segregated world to the new world of accessibility and acceptance. Our children will succeed by combining their strength, our encouragement, help from skilled professionals, reliance on and understanding of technology and a close reading of those sign posts along the way.
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