The 7 wonders of the world of disabilities.
I'm sure you saw the coverage in 2007--everywhere from USA Today to National Geographic. The New 7 Wonders of the World organization announced a shiny new list of the world's premier candidates. (For more information, visit www.new7wonders.com) A whopping 100 million global citizens cast their votes, naming their picks for the seven international representatives of historical human heritage. What topped the list? Rome's coliseum; Machu Picchu, the Amazon's city in the clouds; India's Taj Mahal; the Mayan temple city of Chichen Itza, Rio de Janeiro's monolithic, Christ the Redeemer; China's Great Wall; and the Palace Tombs of Petra.
At Exceptional Parent magazine, we were intrigued and inspired by the New 7 Wonders undertaking, and it started us thinking. If we had to name the 7 Wonders of the World of Disabilities, what or who would they be? Would it be historical breakthroughs or would modern and still-developing wonders rise like cream to the top of the list? What events, inventions, legislation, people, groups, etc. have most significantly shaped, affected, or defined the world of disabilities?
During the past year, EP's editorial staff spent time talking with leaders in the disabilities field in narrowing down the list. Choosing just seven was the greatest challenge. Some "wonders" were chosen because they represent some of the earliest, most tangible vestiges of a concept or idea (oftentimes the precursor or path-paver for much of the technology and services on which we depend today) and others because of the promise they hold for future generations. The 7 Wonders of the World of Disabilities are presented as a group with no ranking. Do you have thoughts and comments about our top seven picks? Let us know by emailing to firstname.lastname@example.org.
For those with disabilities, key federal legislation, much of which followed from the trail blazed by the Civil Rights Act of 1964, has guaranteed various rights under the law--everything from the right to having accessible housing, public buildings, and voting booths, to a free and appropriate public education and the right to access technology that aids in daily living. Chosen as a member of of EP's 7 Wonders under the category of Landmark Legislation are the Americans with Disabilities Act (ADA), because of its sweeping guarantee of rights in so many aspects of the life of a person with disabilities and the Individuals with Disabilities Education Act (IDEA) because of its far-reaching benefits for children with disabilities in receiving a "free and appropriate public education." (See Editor's Note below.) The U.S. Department of Justice Civil Rights Division provides the following information about each.
The Americans with Disabilities Act: "The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications. It also applies to the United States Congress. To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered."
The Americans with Disabilities Act of 1990 (ADA) was signed into law on July 26, 1990, by President George H. W. Bush. The Act is divided into the following sections: Employment, Public Services (and public transportation), Public Accommodations (and Commercial Facilities), Telecommunications, and Miscellaneous Provisions. Noteworthy is the way that many disparate groups came together to promote the Act and see it through to passage. Also of interest is the fact that civil rights groups outside the disabilities community assisted in the effort toward passage.
The Individuals with Disabilities Education Act: "The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.
"IDEA requires public school systems to develop appropriate Individualized Education Programs (IEP's) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student.
"IDEA also mandates that particular procedures be followed in the development of the IEP. Each student's IEP must be developed by a team of knowledgeable persons and must be at least reviewed annually. The team includes the child's teacher; the parents, subject to certain limited exceptions; the child, if determined appropriate; an agency representative who is qualified to provide or supervise the provision of special education; and other individuals at the parents' or agency's discretion."
Editor's Note: Admittedly, since the original passage of the ADA, some Supreme Court and lower court decisions have unduly narrowed the scope and focus of the legislation; however, it still stands as a landmark Act. Of note is the recent passage of the ADA Amendments Act by the Senate and House and the signing of it into law by President George W. Bush on September 25, 2008.
The ability to effectively communicate with others is a paramount process in the human experience. An individual's capacity to express feelings, wants, and needs--to make a vital connection with others--is a central component of a person's quality of life, contentedness, and general happiness. And communication can happen in a myriad of ways--both verbal and nonverbal. For many with disabilities, actual spoken language may be challenging to impossible, dependent on the disability. The recognition that communication, in whatever form it takes, is an absolute necessity solidified EP's choice of this Wonder, grouped under the title Communication Breatkthroughs, as it shows some of the most landmark and concrete steps to make communication available to all. Grouped under this Wonder are the creation of Braille and the use of sign language. From these early and still-used forms of communication, those with communication challenges now have an array of methods and devices--everything from printed symbols to speech-generating devices to touch-based communication devices that allow the user to transmit tactile sensations.
The Braille System: Braille, a tactile reading and writing system for those with visual impairments, is named for Louis Braille who devised the system in 1821. At the young age of three, Braille sustained an eye injury. Subsequent eye infections, purportedly a result of the concoctions applied by local healers and physicians to cure his visual impairment, eventually led to complete blindness. A student of a Parisian school for the blind, Braille had experimented with a system for tactile writing as a youngster, arranging everything from pieces of leather to upholstery pins in patterns. It's when he first touched the raised dots of the communication system called "night writing" created by Charles Barbier for nighttime military maneuvers that he knew he had found the answer. Barbier's system was highly complex though and was ultimately rejected by Napoleon's military. Braille's changes to Barbier's idea, using a simpler, six-dot system that a human finger could completely encompass and thus move quickly from symbol to symbol, was revolutionary at the time of its creation. The fact that it is still in use today only punctuates the influence of the Braille System on the world of disabilities.
The Use of Sign Language: Although the written history of sign language dates back to 17th century Spain, it is safe to assume that throughout the annals of humanity forms of signed language have existed in any community that had citizens with hearing impairments or speech challenges. Sign language made EP's list of Wonders because of its global nature as, generally, all spoken languages have a sign language counterpart and because of its linguistic complexity as sign is a true language, with all the richness, intricacy, and nuance of any spoken language. Sign language is a truly fascinating language of patterns. It's a language which involves everything from hand shape, movement, and location, to palm orientation, facial expression, lip movement, and other body language--all taking place simultaneously--coupled with a complex grammatical structure. And it's a language that can convey meanings that range from the simple and concrete to the most highly abstract.
The ability to be mobile, to move about freely based on one's own will and whim, is perhaps one of the factors that most affects an individual's sense of personal independence and ultimately their psyche. The invention of the wheelchair made EP's list of Wonders because for those with physical challenges that limit mobility, it is indeed a vital key to independence.
While there is no complete and definitive history of the wheelchair, the following historical mentions are noteworthy.
* A 6th century Chinese sarcophagus depicts an image of a wheelchair.
* Roman physicians prescribed wheeled transportation for those who were ill or had disabilities as early as 1553.
* In 1595, King Phillip II of Spain had one of the most elaborate rolling chairs noted up to that time, complete with adjustable arm and leg rests.
* The Civil War saw wide scale use of wheelchairs built with wooden frames, wicker seats, adjustable arm rests, footrests, and large-spoked wheels.
* In 1894, a patent was filed for a wheelchair with a fixed frame and large rear wheels so the user could self-propel.
* In the 1930s, Herbert Everest and Harry Jennings (who formed the E&J company) teamed up on the design of a wheelchair with a folding frame, and Sam Duke marketed a similar folding design.
* In the 1950s E&J developed the first powered wheelchair.
Today, wheelchairs and tangential products are a multi-million dollar industry with various types of specialty wheelchairs available, like sports wheelchairs and beach wheelchairs. Wheelchairs can be controlled by the user through a variety of methods e.g., with a joystick, by way of head movement, through breath control, etc. And the tangential products like wheelchair-mounted communication devices, wheelchair lift systems for vehicles, homes, and offices further increase the options available for those who use a wheelchair for mobility.
Like most great events, it began on a small scale. As early as 1962, Eunice Kennedy Shriver was hosting a camp at her Rockville, Maryland home for campers with intellectual disabilities.
The camp focused on physical activity and sports, using these positive avenues for developing strength and skills, for promoting competition, and for building self-esteem and relationships. Camp Shriver became an annual event, and through the 1960s, the Kennedy Foundation gave grants to support similar programs nationwide.
In 1965 one of these grants supported a workshop for recreation teachers in the Chicago area. One of those teachers was Anne Burke, and in 1967 she proposed a city-wide track event for runners with intellectual disabilities, fashioned after the Olympic Games. Shriver immediately saw the potential in the idea and encouraged Burke to expand the idea to include other sports and to invite athletes from across the United States. On July 20, 1968, Chicago's Soldier Field saw 1000 athletes from 26 states and Canadian provinces enter the arena for the First International Special Olympics.
In the 40 years since that first event, Special Olympics International has experienced colossal growth. A truly global movement, the Special Olympics now has 2.5 million participating athletes, representing 180 countries.
EP ranks Special Olympics International among its 7 Wonders as it represents one of the best and most organized global efforts to advance the cause of awareness and education about the population of people with intellectual disabilities. This was no more evident than at last year's World Summer Games in Shanghai, China, a nation known historically for its human rights violations. Choosing Shanghai as the site for the 2007 Games was a deliberate one. According to Special Olyimpics: "To have an impact in such a place, to alter how things have been done for generations, would seem to be, at first glance, little more than a pipedream. Bur for two weeks in early October, at sports venues throughout the eighth-largest city in the world, the Special Olympics 2007 World Summer Games broke new ground and erased previous misconceptions, one athlete at a time, one event at a time."
The work of Dr. Wolf Wolfensberger on the Principles of Normalization and Social Role Valorization
In today's world the concept that ALL people should have the same rights and civil liberties and the same access to everyday living conditions and circumstances as everyone else, regardless of disabilities either physical or cognitive, seems a forgone conclusion. Of course, they should. But when the young Dr. Wolf Wolfensberger, now 74, was first advancing and expanding the principle of Normalization, first devised by Scandinavian Bengt Nirje in the 1960s, and formulating the concept of Social Role Valorization (SRV) in the 1970s and 80s, it was far from a forgone conclusion. In fact, Dr. Wolfensberger can remember heated debates with his academic colleagues, a few he says, "which almost digressed to physical violence." But what are the principles of Normalization and Social Role Valorization? Quoting directly from the extensive literature done by Nirje and Wolfensberger:
The Normalization Principle and Social Role Valorization: "The normalization principle means making available to all people with disabilities people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society." (Bengt Nirje, The basis and logic of the normalisation principle, Sixth International Congress of IASSMD, Toronto, 1982.)"
As Wolfensberger has continued to hone the principle of Social Role Valorization, he defines it as "the application of what science can tell us about the enablement, establishment, enhancement, maintenance, and/or defence of valued social roles for people" (Susan Thomas and Wolf Wolfensberger in Flynn and Lemay 1999, p. 125). In other words, Wolfensberger's work recognizes that society often tends to label groups of people as fundamentally "different." This label often means that society looks at these as having less value as everyone else. Based on this premise, a cataloging of the methods of this devaluation and an analysis of its effects on people, groups, and society ensues. And from this foundation, the natural next step is that advocates can seek to fight, debunk, and counteract these societal pigeonholes.
EP has chosen Dr. Wolfensberger and his work as one of its 7 Wonders because of the major effects the principle of Normalization and the principle of Social Role Valorization have had on the way human services for people with disabilities have been structured and are delivered throughout North America, Australia, Europe, and the United Kingdom. In fact, that these services developed at all is, in part, a result of Wolfensberger's voice.
A historical look back is always a worthwhile endeavor. This forward-looking Wonder, however, may perhaps most significantly shape the future of the world of disabilities. Since ethical issues have swirled around the Human Genome Project (HGP) since its very inception, no doubt, questions, debates, and soul-searching will continue to play a key role moving into the future.
The U.S. Human Genome Project was formally begun in 1990 and was completed in 2003, three years ahead of its scheduled deadline date. According to the HGP Web site (http://www.ornl.gov/sci/techresources/ Human_Genome/ project/about.shtml), the project had the following goals:
* identify all of the approximately 20,000-25,000 genes in human DNA,
* determine the sequences of the 3 billion chemical base pairs that make up human DNA,
* store this information in databases,
* improve tools for data analysis,
* transfer related technologies to the private sector, and
* address the ethical, legal, and social issues (ELSI) that may arise from the project.
With the HGP now completed and all human genes identified, the work is far from over as the analyses of the voluminous amounts of data will continue for years. How this analyses will affect the world of disabilities is still an unwritten book, but affect it, it certainly will. Already, researchers are producing a previously unimaginable amount of data on human chromosomes. These chromosomes contain thousands of genes, which hold the answer to a multitude of questions about the many human genetic disorders that affect children and adults. Figure out what on the gene went awry, and new treatments and perhaps cures suddenly become a very real possibility.
But like any new medical frontier, the potential for ethics violations is a very real issue. Stay tuned! The impact of the HGP and the subsequent data analyses will, doubtless, shape the world of disabilities in an unprecedented way.
While quite likely, we could have devised a list far greater than 7 Wonders that just encompasses medical breakthroughs for those with disabilities, EP ranks the following two as highly significant because of their historical qualities, their far-reaching impact, and the fact that they represent discoveries that sought to prevent a disabling condition altogether or lessen its impact, the Guthrie test and the polio vaccine.
Robert Guthrie and the Guthrie Test: Devised in 1962 by physician and bacteriologist, Robert Guthrie for detecting phenylketonuria (PKU) in newborns, the Guthrie test represents the medical profession's first foray into newborn screening based on a tiny blood sample gathered through a heel prick when a baby is only two to three days old. PKU is an inborn error of metabolism whereby the body is deficient in the enzyme phenylalanine hydroxylase (PAH) and thus is unable to metabolize the amino acid, phenylalanine, to the amino acid tyrosine. While no cure exists, PKU is one of the few genetic diseases that can be managed through a controlled diet regimen, by limiting the intake of foods high in phenylanine and increasing the amount of tyrosine in the diet. If undetected and untreated, PKU can have serious consequences with brain development, progressively leading to mental retardation and seizures. It's easy to recognize the profound advantages to early detection as any damage done is irreversible. PKU is now one of over 50 conditions for which the infant heel prick blood sample can test, and Universal Newborn Screening is a common practice in thousands of U.S. hospitals. However, some states still do not screen for the entire battery of conditions that can now be detected so there is still education and advocacy work to be done. EP has long championed the expansion, adoption, and development of universal newborn screening and provides ongoing updates for our readers.
Jonas Salk and the Polio Vaccine: April 12, 1955 was historic as the day that Jonas Salk's vaccine for poliomyelitis (polio) was unveiled to the world. A viral, infectious disease that can cause lifelong paralysis or can be fatal as breathing organs are paralyzed, polio was not recognized as a distinct illness until the mid 1800s. Polio appeared in epidemic proportions in the 20th century and was one of the most dreaded of childhood diseases and for good reason. According to the Centers for Disease Control and Prevention (CDC): "A 1916 polio epidemic in the United States killed 6,000 people and paralyzed 27,000 more. In the early 1950s, there were more than 20,000 cases of polio each year." The polio vaccine is a success story of epic proportions; in just a few short years after the 1955 introduction of the vaccine, the CDC reports: "By 1960 the number of cases had dropped to about 3,000, and by 1979 there were only about 10. The success of polio vaccination in the U.S. and other countries sparked a world-wide effort to eliminate polio."
A Deserving Honorable Mention
Assistance Animals: Throughout human history, there are recorded examples of animals providing assistance and therapeutic benefits to people who are ill, people with disabilities, etc. In fact, the Web site of The Animal Welfare Information Center, which is a part of the United States Department of Agriculture, says that "providing for the health of humans through animal interactions dates back many centuries. As an example, horseback riding is mentioned throughout history as a cure for various sicknesses including gout, neurological disorders, and depression."
Today, people are perhaps most familiar with the use of dogs as assistance animals. In fact, dogs hold an ever-increasing number of "job titles" in relation to their use as helpers, lifelines, and friends. For instance, guide dogs assist those with visual impairments and hearing dogs those with auditory impairments, completing tasks out in the community and in the home setting. Dogs are also trained in helping with mobility for those with physical disabilities. There are even dogs in use now that serve as alerters to an owner's impending seizure and can assist during a seizure to help the person ease to the ground. Dogs are also being used as companions, providing comfort and therapy to those with mental illness, autism, etc.
And dogs are not the only animals in use today. Animals like monkeys, horses, ponies, rabbits, pigs, and birds are being tapped for their ability to assist and/or comfort those with disabilities.
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|Author:||Hollingsworth, Jan Carter; Apel, Laura|
|Publication:||The Exceptional Parent|
|Date:||Nov 1, 2008|
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