Fig. 1.1
The hospital for lunatics. Bethlem Hospital, London: the incurables. More from english-heritage.org.uk/
Early Wars and the Advance of Disabled Rights
These incremental recognitions of the civil rights of people with disabilities in Europe and the United States eventually took a step forward through formal codification in a series of public laws. On July 16, 1798, the newly formed United States of America passed the Military Disability Law—the first of its kind. President John Adams signed the act for the “relief of sick and disabled seamen,” to provide soldiers, marines, and seamen who were dismissed from the military with a small one-time allotment for their limb loss or injuries and to assist them reentering into society [4]. The work in Europe started in the previous century began to shed the commonly held idea that people with mental and physical illness were not possessed or invaded with demons but had medical problems. That coupled with the advances in medicine and education furthered the understanding of persons with disabilities. In the 1860s, Dr. William Little made the first step toward identifying cerebral palsy (CP, or spastic diplegia) by describing children with stiff and/or spastic muscles in their arms and legs. Little also correctly guessed that the condition is caused by lack of oxygen during gestation or birth [5].
Between 1815 and 1817, formal education for those who were deaf and hearing impaired was developed in the United States by Thomas H. Gallaudet. Gallaudet traveled to France in 1815 and learned how to teach deaf individuals to communicate using new system of hand signals. Upon his return, he founded the “Connecticut Asylum for the Education and Instruction of Deaf and Dumb Persons” in Hartford, Connecticut, on April 15, 1817. Significant for marking the beginning of American efforts to educate people with disabilities, it is the first permanent school for individuals who are deaf in America, now called the American School for the Deaf [6] (Fig. 1.2).
The Civil War was a time of great upheaval in the United States and inflicted the greatest death toll on our society by the volume of those killed—approximately 750,000 casualties, which represents around 2.5% of the total US population. This amount was greater than any other war in our history. Conservative estimates placed the total number of amputations from the four-year war at around 30,000 in the Union Army alone. This event brought “acquired disability” issues to the American consciousness as those otherwise healthy veterans returned to their homes and tried to again become productive members of the society. The public recognized the obligation from society toward those who have served and protected them, and the US government responded by creating the Great Civil War Benefaction program to provide prostheses to all disabled veterans. This government support led to a boom in prosthetic development and manufacturing; thereby it effectively created the prosthetic industry [7] (Fig. 1.3).
Fig. 1.3
Civil War bilateral upper limb amputee, with advanced prosthetic limbs, Pinterest: https://s-media-cache-ak0.pinimg.com/736x/5c/26/2b/5c262b3121a84d05b72d617721ae1473.jpg
After World War I, several laws were enacted recognizing for the first time the country’s obligation to individuals injured in service and building on the work done after the civil war for veterans; specifically the Smith-Hughes Act of 1917 established the Federal Board of Vocational Education with the authority and responsibility for vocational rehabilitation of disabled veterans [8]. Later the Smith-Sears Veterans Rehabilitation Act of 1918 (also referred to as the Soldier’s Rehabilitation Act) expanded the role of the Board to provide services for vocational rehabilitation of veterans disabled during World War I. Then, in 1920, the Smith-Fess Act (referred to as the Civilian Rehabilitation Act) began the rehabilitation program for all Americans with disabilities patterned after the Soldiers Rehabilitation Act [9]. It established the Federal-State program in rehabilitation and provided funds to states for primarily vocational services, including vocational guidance, training, occupational adjustment, prosthetics, and placement services. Additionally, the first department of physical medicine and rehabilitation was started in 1929 at Temple University Medical School by Dr. Krusen [10]. Though there had been physicians who specialized in physical rehabilitation (then known as physical therapy physicians), there were no formal training centers or residency. He moved to the Mayo Clinic to start the first residency in 1936, graduating the first resident-trained physician in the field in 1939. In 1947, the first board of physical medicine specialty was given by the newly recognized American Board of Physical Medicine and Rehabilitation (AAPMR) [11, 12] (Fig. 1.4).
Fig. 1.4
The Great Depression and Disabled Rights
The next major stride in the advancement of the rights of the disabled person was the signing of the Social Security Act (SSA) in 1935 by President Franklin Delano Roosevelt, which included a clause to establish a program of permanent assistance to adults with disabilities. The SSA established federally funded old-age benefits and funding to states for assistance to blind individuals and disabled children and extended existing vocational rehabilitation programs [13]. Additionally, during the Depression, there was a jobs program to get the county working again. The Works Progress Administration (WPA) gave jobs and vocational skill training for the unemployed. However, a poorly applied policy that required people with disabilities requesting employment with the WPA to be labeled with “PH” for “physically handicapped” led to a nine-day sit-in at the Home Relief Bureau of New York City. Three hundred members of the League for the Physically Handicapped staged this action that eventually helped secure several thousand jobs nationwide for disabled people. This sentinel event was significant because it marks the first time people with disability took action into their own hands and won [4] (Fig. 1.5).
Fig. 1.5
Franklin D. Roosevelt signs the G.I. Bill; June 22, 1944, almost 10 years after signing the WPA. FDR Library Photo Collection. NPx. 64-269
WWII: German Atrocities and Post-War Benefits for Disabled Veterans
Just when people with disabilities were making great strides in the United States, great crimes were being committed against humanity on the other side of the Atlantic Ocean. Hitler’s Nazi program Aktion T4 killed thousands of people with disabilities in the name of euthanasia for “life unworthy of life.” An estimated 75,000–250,000 people with intellectual or physical disabilities were systematically eradicated from 1939 to 1941 through various methods, including gas and starvation [14]. After the program was discovered at the end of the war, the horror of this program helps slow the eugenics movement in the rest of the western world. Eugenics programs were founded on the philosophy of improving the genetic composition of the population, resulting in laws passed to prevent people with disabilities from moving freely, marrying, or having children. Further actions based on this philosophy lead to the institutionalization and/or forced sterilization of many disabled adults and children. Though, it is important to note that sterilization was continued well into the 1970s as a form of treatment and control [4, 15] (Fig. 1.6).
Fig. 1.6
The Action A-4 Order from Adolf Hitler, by Marcel—own work, Public Domain, https://commons.wikimedia.org/w/index.php?curid=3690975
In 1940, the National Federation for the Blind formed to advocate for legislative reforms to benefit the blind. The American Federation of the Physically Handicapped was the first cross-disability national political organization to urge an end to job discrimination and lobby for legislation. As WWII raged on, the casualties were mounting and the effect of the workforce was being felt. During the war, in 1943, the LaFollette-Barden Vocational Rehabilitation Act added physical rehabilitation to the goals of federally funded VR programs providing funding for some healthcare services [9]. Then in 1944, Col. Howard Rusk, M.D., began a rehabilitation program for disabled airmen at the US Army Air Corps Convalescent Center in Pawling, New York, where he began a rehabilitation program for disabled airmen. First dubbed “Rusk’s folly” by the medical establishment, because it is still not an official specialty, his program was considered a huge success and was duplicated around many of the Army medical hospitals at the time. In 1947, rehabilitation medicine became a new medical specialty known as physiatry [1, 11, 12, 16] (Fig. 1.7).
Fig. 1.7
Dr. Howard Rusk and Roy Campanella. By Roy Campanella, 2016
In 1946, the Hill-Burton Act authorized federal grant monies for the construction of hospitals, public health centers, and health facilities for the rehabilitation of people with disabilities. Conscientious objectors, who served as attendants at state mental institutions rather than in combat during the war, founded the National Mental Health Foundation, exposing the horrid conditions at facilities that became catalyst toward deinstitutionalization several decades later [17]. In 1946, President Truman’s National Employ the Physically Handicapped Week was an impetus for disability rights advocacy activities. Subsequently, in 1947, the Paralyzed Veterans of America was organized and became the early voice, advocating for disability rights [18–20] (Fig. 1.8).
Fig. 1.8
University of Illinois student from 1940 to 1950s, with stair ramp, after WWII. University of Illinois archives, 2016
1960s: Women’s Rights Movement, Civil Rights Movement, and Disabled Rights Movements
In the 1950s and the 1960s, the movement for the disabled rights started to pick up tempo at the national level, as series of infrastructure initiatives put accessibility rights in public view. Post war and modern building designers and builders started setting accessible standards across the country. With thousands of returned veterans with physical disabilities, as well as the polio epidemic survivors, and other people with disabilities started asking for access to public buildings, it led to the launch of the barrier-free movement. It combined effort between private entities and the government, the Veterans Administration, the President’s Committee on Employment of the Handicapped, and the National Easter Seals Society, and the Rehabilitation Center at the University of Illinois contributed to the development of national standards for barrier-free buildings [21]. The first accessibility standard, “Making Buildings Accessible to and Usable by the Physically Handicapped,” was published in 1961 by the American Standards Association. In 1963, the Federal government set aside funding for disability infrastructure support to help local governments to meet and to adapt building to new standards. Yet, even with all that support, it took 10 years for forty-nine states to adopt accessibility legislation by 1973 [22]. The final push by the government to open up access to public buildings to people with disabilities was in 1968, the Architectural Barriers Act [23]. This mandated the removal of what is perceived to be the most significant obstacle to employment for people with disabilities—the physical design of the buildings and facilities on the job. The act required that all buildings designed, constructed, altered, or leased with federal funds be made accessible, because if you cannot easily enter a building, then you cannot expect to be employed.
In the 1970s, the protest movements of the 1960s of the Vietnam War, women’s rights, and civil rights movements created the human capital that would be utilized by the disability rights community. In 1970, educator and disability activist Judy Heumann sued the New York City Board of Education when her application for a teaching license was denied. The stated reason was the same originally used to bar her from kindergarten nearly 20 years earlier that “…her wheelchair is a fire hazard” [24]. In 1973, Section 504 of the Rehabilitation Act made it illegal for public entities to discriminate. All federal agencies, public universities, and other public institutions who were receiving any federal funds could not discriminate on the basis of disability [9, 22]. This law is considered by many in the special education field as the turning point for including people with disabilities in all areas and levels of education and beyond. Then in 1974, some of the more arcane laws came to an end, specifically the removal of last of the “ugly laws.” These inhumane laws existed for many decades, designed to clean the streets “unwanted elements of society” or at least to hide them from public view. An example: “If a beggar had disability—was paralyzed, or was blind—and if crowds would gather around, the police would come and if the people were getting upset,” [it was ok to arrest] the offending person (R). What was unthinkable now existed in Chicago just 31 years before this book was written [4, 25] (Fig. 1.9).
Fig. 1.9
Ed Roberts, protesting access to UC Berkeley, 1963. http://www.nilp.org/about-us/history/2016
Rights to Education
The right to public education for people with disabilities came into the forefront in 1962 when Mr. Ed Roberts, a young man paralyzed with muscle wasting due to polio, was turned down for admission at the University of California, at Berkeley, solely because of his disability. In his pursuit to get the decision overturned and attend school, he became the father of the Independent Living Movement and later helped to establish the first Center for Independent Living (CIL) in Berkeley, California [26]. This right was furthered when the Mental Retardation Facilities and Community Mental Health Centers Construction Act passed in 1963 [26, 27]. The Act provided funding for developing state developmental disabilities councils—advocacy systems. Furthermore, because this legislation funded universities to do research in this area, they generated a lot of data and experts with interest in the education of persons with disabilities. In 1965, Title XIX (19) of the Social Security Act established a cooperative Medicaid and, for the first time, provided assistance with medical costs for low-income individuals with disabilities [18, 22, 28].
The next 30 years were a series of laws that built on each other to provide access to education for all. The Education for Handicapped Children Act of 1975—now called the Individuals with Disabilities Education Act (IDEA), which guarantees a free, appropriate, public education for all children with disabilities in the least restrictive environment. Before this, most special needs classes were segregated “special self-contained classes.” The Technology-Related Assistance for Individuals with Disabilities Act of 1988 was passed which provided funds for assistive technology and increased access to, availability of, and funding for assistive technology through state and national initiatives. Creating much of the assistive technology computer interfaces we use today, such as text-to-speech, speech-to-text, adaptive keyboards, tablets, joysticks, and track pads; changing the interfaces to computers and the new technologies—thus assisting bridging the gaps between intellect, communication and access. These results and laws dramatically changed the landscape of local schools throughout the nation; before, districts were not “required” to spend over the yearly per pupil amount that they spent on “regular child’s education” for “a special child’s education,” thus creating a very limited method to pay for anything extra or appropriate [9, 15, 18, 22] (Fig. 1.10).
Fig. 1.10
Protesters march in Washington, DC, in March 1990 as part of a campaign urging the House of Representatives to move ADA legislation
In 1990, the Americans with Disabilities Act (ADA) was signed into law by President George H. W. Bush alongside its “founding father,” Justin Whitlock Dart, Jr. Dart Jr. was a polio survivor and disability rights advocate who in 1954 graduated with a degree in history and education from the University of Houston, in Texas, and was denied a teaching license due to his disability. The ADA was the national policy that mandated civil rights ending the centuries-old discrimination of people with disabilities [29].
Then, in 1995, Christopher Reeves, the movie actor who played Superman in Superman, The Movie, was paralyzed in a horse-riding competition, sustaining a severe vertebrae fracture that paralyzed him from the neck down. Because of the timing with recent advanced airway management in first responders, his stature as a movie star, and he and his wife’s activism, he brought attention to people with spinal cord injuries (SCI). To this day, the Christopher Reeves Foundation is a major contributor in SCI education and research [30]. As basic civil rights became more commonplace, people with disabilities started to want and demand inclusion into doing eveyday events—such as sport. In November 1999, a US District Court judge issued an emergency court order telling the Lawton, Oklahoma, Evening Optimist Soccer League to allow Ryan Taylor, a nine-year-old with cerebral palsy, to play in the league. His walker, also referred to as a safety hazard by the defendants, was padded during games, and the boy played on [31].