Merriam- Webster dictionary defines a disability as “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.” (Merriam-Webster Online, n.d.) Disability can be congenital, or a person can become disabled at any point in their life.
When considering Zastrow’s definition of a social problem, the fact alone that the disabled makes up such a large portion of the population in America and the discrimination and barriers they’ve had to overcome throughout history and even today certainly defines a social problem. According to the United States Census Bureau, nearly one in five Americans have some category of a disability, a statistic which makes this group one of America’s largest minority groups (Brault, 2010). It’s also important to take into account the numerous groups who advocate for members of this population to receive the same opportunities as a non-disabled person does. A few of these organizations include: The ADA National Network, which “provides guidance and training on how to implement the Americans with Disabilities Act (ADA) in order to support the mission of the ADA to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”, the American Association of People with Disabilities, the largest national nonprofit cross-disability member organization in the United States, which works with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973. (National Center on Disability and Journalism, N.D.).
Historically, the disabled have been discriminated against for centuries. As far back as Elizabethan times, the disabled were separate from the rest of society, at first as members of the “worthy” poor. However, during the 1800’s, which is where the focus of this paper begins, the views of people turned to the disabled population being “insane” or “feebleminded”, and many of them spent their lives in institutions or asylums, separated from their families and subjected to awful conditions and abuse. At this time, the disabled were not regarded as equal members of society. They were assumed to be unintelligent and this is a stigma that followed them throughout history and into current times. The disabled were also often grouped with the mentally ill and it was thought these different populations could receive the same kind of treatment. The institutions for the disabled were established as mostly strictly a place to live. Very few institutions offered this population the chance to receive any kind of education at this time. (Barusch, 2017).
In the late 19th century, Francis Galton termed the word “eugenics”, which became accepted in the late 1800’s and early 1900’s. This policy suggests that mental and physical disabilities are the reason behind social problems such as poverty and crime. Galton believed that the way to solve this problem was to enforce public policies such as compulsory sterilization, restricted immigration, restricted marriage, and institutionalization. The goal of enforcing the aforementioned policies was to keep the “less desirable” genes from being passed down to future generations. By 1897, half the states in the country had passed laws declaring marriages between people deemed “insane” or “feebleminded” null and void. The first sterilization law was passed by Indiana in 1907 and by 1930, 28 states had enforced laws authorizing sterilization of those deemed unfit. (Neuhaus, Smith, and Burgdorf, 2014)
Consider the treatment of children with disabilities. In early colonial times, “babies born with serious mental impairments were subjected to infanticide, and others were abandoned when they threatened the survival of a group”. Sometimes, a baby born with disabilities was blamed on a sin a family member committed. In the 1800’s, children who were born with developmental disabilities were in two groups. If their family was well off enough, they were isolated in their own private home and raised, or they were raised in asylums. These asylums made no attempt to provide any kind of special education program for children, and the living conditions for both disabled adults and children were horrific. (Barusch, 2017).
Dorothea Dix, a social reformer of the time who spent time teaching Sunday School to female inmates at a correctional facility in Massachusetts, was appalled at the conditions the female inmates were living in. For the next two years, Dix toured jails, almshouses, and asylums across the country. Dix noted that from her findings that this population was severely lacking in appropriate care and protection. She told of individuals “bound with galling chains, bowed beneath fetter and heavy iron balls, attached to drag chains and subject to “the vilest and most outrageous violations” (Parallels In time, A History of Developmental Disabilities, 2018)
Dix made appeals to the Congress via her friend and, a well known social reformer himself, Samuel Gridley Howe. Although her appeals were vetoed by President Pierce, her advocacy for the disabled helped pave the way for public institutions. (“Parallels in Time, a History of Developmental Disabilities, 2018). It was also during the 19th century that people believed those born with a disability became more of a medical issue and were looked at as “broken”, and needing to be “fixed” or “cured”. As mentioned earlier, the idea of eugenics was very popular around this time and the disabled were forced to undergo sterilization and spent most of their lives living in institutions or asylums. The negativity surrounding disabilities continued to follow individuals with disabilities for decades.
Moving forward into the 20th century, the idea that this population could be rehabilitated came to a head. In 1910, the Widener Memorial School for Crippled Children was established in Philadelphia, and “combined physical treatment with a moral, vocational and academic curriculum,” (Barusch, 2017). However, children with disabilities continued to be segregated at this time.
In 1938, The Willowbrook State School was built on New York City’s Staten Island. It was first used as a hospital for returning veterans, but by 1951, it housed over one thousand adolescents. While it was true that children attended classes, the school was more of a place for disabled children to reside indefinitely. The children were cared for by state tax dollars, so families of these children who couldn’t afford private care or who did not want to care for these children themselves, thought Willowbrook would be a good option. Many residents lived there for more than twenty years. With so many individuals, there was a need for staffing. However, there was a very low level of nurses, doctors, and staff in general who were willing to work with the disabled population, which meant there was severe understaffing.. A few years after opening, over six thousand children were living at Willowbrook, despite only having room for four thousand. As one can imagine,the living conditions were much what Dorothea Dix had seen during her tours of asylums and institutions back in the 19th century. The majority of children received very little care. For example, many children could not use the restroom independently, and sat in their urine and feces until someone could clean them. Many children suffered physical injuries and were not treated for some time after their injuries, often because of lack of staff, or because of inexperienced staff. The ratio of residents to staff was sometimes fifty to one. (Ely, 2015)
Willowbrook was overcrowded, understaffed and underfunded. However, what set Willowbrook apart from other institutions in New York State at the time was the fact that they accepted children as young as five years old. They also had the highest population of Blacks and Latinos in their institution. The overcrowding resulted in abuse and disease. The spread of hepatitis within the building was cause for a public health crisis. In 1965, Senator Robert Kennedy paid Willowbrook an unannounced visit, where he saw for himself the dismal living conditions of these individuals, living in filth and wearing rags. During a television interview upon his visit, Kennedy described the situation at Willowbrook as a “snake pit”, and that the children were “living in filth and suffering from lack of attention, imagination and adequate manpower.” Kennedy continued by saying that there was “very little future for these children, for those who are in these institutions. Both need a tremendous overhauling.” (Parallels in Time- A History of Developmental Disabilities, 2018).
After Kennedy appeared on television, the conditions at Willowbrook became known on a national level. As a result, New York state implemented a five year improvement plan, and while minor adjustments were made to the institution, these adjustments proved to be temporary and soon Willowbrook went back to the same inhumane conditions that had put them in the national eye in the first place.
In the midst of the treatment of the disabled in Willowbrook and other institutions across the country, the Civil Rights Movement was in full force. By the 1960’s, the Civil Rights Movement brought disability advocates moving alongside other minority groups for their voices to be heard. The struggle for disability rights followed a pattern similar to many other civil rights movements- challenging negative attitudes and stereotypes, rallying for political and institutional change, and lobbying for the self-determination of a minority community. (“A Brief History of the Disability Rights Movement”, 2005). The Civil Rights Act of 1964 brought about change in inequality among race, however, Congress continued to fail to recognize the inequality that people with disabilities were facing. During the movement, activists organized on the local level challenging national initiatives to discuss the barriers the disabled population faced. Families fought for their children’s rights to have the same as other children in schools and the community. The disability rights movement followed and adopted many of the same strategies the participants in the Civil Rights Movement had used. People with disabilities began marching in protests and continuously speaking out for social injustice. The first federal civil rights protection for people with disabilities, Section 504 of the Rehabilitation Act, was signed in 1973. This outlined that no organization receiving federal funds could discriminate people with a disability. Section 504 states that “no otherwise qualified handicapped individual in the United States shall solely on the basis of the handicap, be excluded from participation, or be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. (Kanter, 2015).
Also occurring during the 1970’s was more national attention pointing to Willowbrook State School. In 1972, Geraldo Rivera, an investigative news reporter for ABC Eyewitness News in New York, filmed an expose of the facility which has been viewed by millions called “Willowbrook: The Last Disgrace.” In the expose, Rivera tells the audience that he received a call from a recently fired doctor at Willowbrook, Dr. Michael Wilkins,who told Rivera that he’d been fired because he called parents of children in building number six at the institution to come together to demand improved conditions within the building. Dr. Wilkins told Rivera to go to building number six to see the conditions for himself, warning him that the conditions were bad, but as Rivera found out, they were “horrible”. Rivera and his crew witnessed children naked, smeared in their own feces, sitting on the floor with no interaction from any staff. Two days after Rivera’s unannounced visit to the facility he and his crew were invited back and were greeted by fully clothed children and loving, attentive staff. However, Rivera did not believe that these changes were permanent, so he and his staff showed up again two days later unannounced and uninvited through a back door, only to find that conditions were exactly the same as the first day he and his crew visited the facility. The expose goes on to expose another facility about an hour away from Willowbrook called the Letchworth Village Rehabilitation Center, which from the outside looked country club-esque, but on the inside, the conditions were reminiscent of Willowbrook. Rivera notes that he felt as though the Department of Mental Hygiene was working to show that the conditions inside were not as bad as they really were, as the congressman at the time was scheduled to make an appearance at ten a.m, Rivera and his crew showed up two hours before unannounced and witnessed the crew bringing in bundles of clothing for the children and beginning the process of cleaning before the congressman was scheduled to arrive. (JDS: 92 Michigan-Florida-Colorado/2017/0:00-10:00)
This exposure of the inhumane treatment of children in these institutions rightfully sparked an outrage among parents and advocacy groups, who took said outrage to federal court. Parents of Willowbrook residents filed a class action lawsuit in U.S. district court of Eastern New York on March 17, 1972, alleging the the conditions at Willowbrook violated the residents’ constitutional rights. This lawsuit became known as New York State Association of Retarded Children v. Rockefeller. In April of 1973, a judge found that the conditions in Willowbrook violated the constitutional rights of people living in state institutions to be protected from harm. According to the judge, the plaintiffs’ constitutional right to protection from harm in a state institution meant that the residents of Willowbrook were “entitled to at least the same living conditions as prisoners.” The request for injunctive relief was also granted, which included prohibiting the use of seclusions and restraints, increasing medical, therapeutic and recreational staffing, requiring maintenance, and requiring regular progress reports. After months of continuing negotiations, on April 30, 1975, the case was settled when the Willowbrook Consent Judgment, : New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey, 393 F. Supp. 715 (1975), was signed. A consent decree which is known as the Willowbrook Consent Decree, was signed as well, and it committed New York to improve community placement for the “Willowbrook Class”. It was announced in 1983 that Willowbrook would be closing, and the last of the children left the grounds in 1987. (“The Closing of Willowbrook”, 2018). During the fight from parents and advocacy groups in regards to Willowbrook and similar institutions, more pieces of legislation were passed in the fight for equality for the disabled population. In 1975, the Education for All Handicapped Children, renamed in 1990 the Individuals with Disabilities Education Act (IDEA), was passed, which is the federal law that supports special education and related service programming for children and youth with disabilities. Before IDEA, United States public schools accommodated only one out of five children with disabilities. Until that time, many states had laws that explicitly excluded children with certain types of disabilities from attending public school, including children who were blind, deaf, and children labeled “emotionally disturbed” or “mentally retarded. (“History of the IDEA”, n.d ).
The Americans with Disabilities Act was passed in 1990 after decades of demonstration and lobbying. Similar to the Civil Rights Act of 1964, the ADA was intended to express a national sentiment that people with disabilities were to be brought into full citizenship. Before the signing of the Americans with Disabilities Act, no case under the constitution had existed to prohibit discrimination among the disabled community by private and state employers or private providers of services. The ADA is broken down under five titles: Employment, Program Access, Public Accomodations, Telecommunications, and Implementation. As an overview, under Title One of the ADA, employment discrimination is prohibited. Businesses are required to provide reasonable accomodations for people with disabilities, such as alternative tools. Employers are also not allowed to discriminate in their hiring process, promotion, pay or any other work related activities based on a person’s disability. Title Two requires state and local government to help people with disabilities benefit from all programs offered, such as social services, court and healthcare. Public transportation services that involve buses and transit must abide by accommodating the disabled population under Title Two. Title Three prohibits discrimination on the basis of disability in activities of places open to the public. Examples include restaurants, zoos, and recreation facilities. Title Four covers telecommunications which offers the disabled accommodations such as relay services, which were made so those with hearing and/or speech disabilities could communicate easier. Closed Captioning was also made mandatory for public service announcements. Title Five relates to provisions relating to the ADA as a whole, including its relationship to other laws, state immunity, its impact on insurance providers and benefits, prohibition against retaliation and coercion, illegal use of drugs, and attorney’s fees (“Laws and Regulations (n.d)).
The treatment of the disabled over time has certainly been a journey. Regardless of legislation put in place, there is still a stigma attached to being disabled, particularly as a minority. As mentioned earlier, the Individuals with Disabilities Education Act (IDEA) was implemented to ensure students with disabilities received special education in school. However, as recently as 2015, only 3 percent of 12th graders of Hispanic or African American descent were proficient in reading, and none of these children were proficient in math (“5 Things to Know About Racial and Ethnic Disparities in Special Education”, 2018). In response to statistics such as this, in December 2016 the United States Department of Education released a letter to educators across the country to express that students of color were still being over-identified as having disabilities, under-identified when it’s confirmed they do have disabilities, or experiencing delays in evaluation of students of color which thereby violates their right to an education. (United States Department of Education, 2016). The over-identification refers to the fact that students of color are overrepresented in terms of disability. Black students are 40 percent more likely, and American Indian students are 70 percent more likely, to be identified as having disabilities than are their peers. Another issue that affects disabled minority children is segregation in the classroom setting. Most recently, children learn in an integrated setting, with disabled children and non-disabled children together in the same classroom. However, minority children with disabilities; 17 percent of African American children and 21 percent of Asian children; respectively, were placed in the regular classroom less than 40 percent of the day on average. (“5 Things to Know About Racial and Ethnic Disparities in Special Education, 2018).
When observing the changes that occured in the treatment of the disabled over time, the impact of the Civil Rights Movement, the fight for the constitutional rights of residents of Willowbrook, and the IDEA act are all as a result of the realization that the treatment of the disabled as a population was a problem in society. These laws and acts helped lay the foundation for the execution of the Americans with Disabilities Act. The perspective and political views of the treatment of the disabled has changed wholly for the better as a result of the passing of these pieces of legislature, however, the disabled still face many barriers today. According to the Center for Disease Control, there are seven barriers that the disabled population most often faces. They are attitudinal, which includes stereotyping, stigma, prejudice and discrimination. One of the major pieces of legislation passed in recent years in support of the disabled population is Rosa’s Law. Signed by President Barack Obama in October 2010, this act changes references to Federal law to mental retardation to references to an intellectual disability, and change references to a mentally retarded individual to references to an individual with an intellectual disability. This act also compelled states to change their terminology in their laws for individuals covered by a provision that was amended by this act.(S. Rept. 111-244 – Rosa’s Law,2010). For example, New York’s department for this population had been named the Office for Mentally Retarded and Developmentally Disabled, and has since been changed to Office for People with Developmental Disabilities. This act is definitely a step forward in combating the prejudice and discrimination surrounding this population.
The second is communication, which affect people whose disabilities may affect their hearing, speaking or understanding, for example the lack of a manual interpretation for an oral communicator such as an American Sign Language interpreter. Third are physical barriers, such as steps and curbs that may block a person with a disability from using a sidewalk or getting into a building. Fourth is policy barriers, which are most often related to lack of awareness that a program must be made accessible to a person with disabilities. Fifth is programmatic barriers, an example of this is insufficient time set aside for a medical examination or procedure, inconvenient scheduling, or a lack of knowledge, understanding and attitude of a provider when assisting a disabled patient. Sixth is social barriers. Example of this would be that people who are disabled are less likely to be employed. They’re also less likely to have completed high school compared to their peers who are not disabled, people with disabilities are also more likely to live in poverty. Finally, seventh is transportation, which is due to lack of convenient transportation for those who may not be able to drive because of a cognitive impairment, or public transportation that may be unavailable or at a distance too far away. (“Common Barriers to Participation Experienced by People with Disabilities,” 2018).
There is certainly a long road to go in the fight for equality for the disabled population. Throughout the focused time periods, one can see the highs and lows the disabled have had to overcome. With advocacy and organizations devoted to ensuring this population overcomes discrimination and stereotypes over centuries, the disabled are on the path to equitable treatment.
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