Disability rights movement

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Alternative access to the subway in Japan

 

Floor marker for visually impaired people in Narita Airport, Japan

The Disability Rights Movement is a global social movement to secure equal opportunities and equal rights for all people with disabilities.

It is made up of organizations of disability activists, also known as disability advocates, around the world working together with similar goals and demands, such as: accessibility and safety in architecture, transportation, and the physical environment; equal opportunities in independent living, employment equity, education, and housing; and freedom from discrimination, abuse, neglect, and from other rights violations. Disability activists are working to break institutional, physical, and societal barriers that prevent people with disabilities from living their lives like other citizens.

Disability rights is complex because there are multiple ways in which a person with a disability can have their rights violated. It is a form of discrimination in which others fail to address a person with disability needs. More specifically, in the 21st century a noteworthy barrier for employment is an employers’ unwillingness or inability to provide the necessary accommodations. When having a discussion about the needs of persons with disabilities, solutions include persons with disabilities as active participants to some extent. Current systems exist that involve third party involvement, such as mental rehabilitation and legal advocacy, but few of these methods include empowering this group to be self-sufficient.

History

United States

American disability rights has evolved significantly over the past century. Before the disability rights movement, Former President Franklin Delano Roosevelt's refusal to be publicized in a position of vulnerability demonstrated and symbolized the existing stigma surrounding disabilities. While campaigning, giving speeches, or acting as a public figure, he hid his disability, which perpetuated the ideology that “disability equates to weakness”. At this point, disability in the United States was a personal issue, and not many political or governmental organizations existed to support these groups. In the 1950s, there was a transition to volunteerism and parent-oriented organizations, such as the March of Dimes. While this was the beginning of activism and seeking support for these groups, children with disabilities were largely hidden by their parents out of fear of forced rehabilitation. When the Civil Rights Movement took off in the 1960s, disability advocates joined the Civil Rights Movement and women’s rights movements in order to promote equal treatment and challenge stereotypes or generalizations. It was at this time that disability rights advocacy began to have a cross-disability focus. People with different kinds of disabilities (physical and mental disabilities, along with visual and hearing disabilities) and different essential needs came together to fight for a common cause.

It was not until 1990 that the Americans with Disabilities Act was passed, legally prohibiting discrimination on account of disability, and mandating disability access in all buildings and public areas. The American Disability Act is historically significant in that it defined the meaning of reasonable accommodation in order to protect employees and employers. Today, disability rights advocates continue protecting those who are discriminated against, and also work towards more niche issues like law enforcement and treatment of people with disabilities. On a global scale, the United Nations has established the Convention on Rights of Persons with Disabilities, specifically discussing indigenous people with disabilities (Lockwood 146).

Disability barriers

The social model of disability suggests disability is caused by the way society is organized, rather than by a person’s impairment. This model suggests barriers in society are created by ableism. When barriers are removed, people with disabilities can be independent and equal in society.

There are three main types of barriers:

1. Attitudinal barriers: are created by people who see only disability when associating with people with disabilities in some way. These attitudinal barriers can be witnessed through bullying, discrimination, and fear. These barriers include low expectations of people with disabilities. These barriers contribute to all other barriers. Attitudes towards people with disabilities in low and middle-income countries can be even more extreme.
2. Environmental barriers: inaccessible environments, natural or built, create disability by creating barriers to inclusion.
3. Institutional barriers: include many laws, policies, practices, or strategies that discriminate against people with disabilities. For example, a study of five Southeast Asian countries found that electoral laws do not specially protect the political rights of persons with disabilities, while ‘some banks do not allow visually disabled people to open accounts, and HIV testing centers often refuse to accept sign language interpreters due to confidentiality policies’. Restrictive laws exist in some countries, particularly affecting people with intellectual or psychosocial disabilities.

Other barriers include: internalised barriers (low expectations of people with disabilities can undermine their confidence and aspirations), inadequate data and statistics, lack of participation and consultation of disabled people.

Issues

People with physical disabilities

Access to public areas such as city streets, public buildings, and restrooms are some of the more visible changes brought about in recent decades to remove physical barriers. A noticeable change in some parts of the world is the installation of elevators, automatic doors, wide doors and corridors, transit lifts, wheelchair ramps, curb cuts, and the elimination of unnecessary steps where ramps and elevators are not available, allowing people in wheelchairs and with other mobility disabilities to use public sidewalks and public transit more easily and safely.

People with visual disabilities

Code Signs for People with CVD

People with color vision deficiency (CVD) regularly deal with implicit discrimination due to their inability to distinguish certain colors. A system of geometrically shaped code signs known as Coloradd was developed by Professor Miguel Neiva of the University of Minho, Portugal in 2010 to indicate colours to people who have difficulty discerning them.

People with developmental disabilities

Advocates for the rights of people with developmental disabilities focus their efforts on gaining acceptance in the workforce and in everyday activities and events from which they might have been excluded in the past. Unlike many of the leaders in the physical disability rights community, self-advocacy has been slow in developing for people with developmental disabilities. As a result, much of the work done by the Disability Rights Movement was completed by allies, or those without disabilities but with a strong connection to someone with disabilities. Parents, friends, and siblings fought for education and acceptance when their loved ones with cognitive disabilities could not. Public awareness of the civil rights movement for this population remains limited, and the stereotyping of people with developmental disabilities as non-contributing citizens who are dependent on others remains common. Today, the movement has a more social focus to increase this public awareness, as evidenced by the "R-Word" Campaign, in which they try to eliminate the colloquial use of the word "retard."

Autism rights movement

The autism rights movement is a social movement that emphasizes the concept of neurodiversity, viewing the autism spectrum as a result of natural variations in the human brain rather than a disorder to be cured. The autism rights movement advocates for several goals, including greater acceptance of autistic behaviors; therapies that focus on coping skills rather than imitating the behaviors of neurotypical peers; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the autistic community as a minority group.

Autism rights or neurodiversity advocates believe that the autism spectrum is primarily genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two other views: the medical perspective, that autism is caused by a genetic defect and should be addressed by targeting the autism gene(s), and fringe theories that autism is caused by environmental factors such as vaccines.

The movement is controversial. A common criticism against autistic activists is that the majority of them are "high-functioning" or have Asperger syndrome and do not represent the views of "low-functioning" autistic people.

People with mental health issues

Advocates for the rights of people with mental health disabilities focus mainly on self-determination, and an individual’s ability to live independently.

The right to have an independent life, using paid assistant care instead of being institutionalized, if the individual wishes, is a major goal of the disability rights movement, and is the main goal of the similar independent living and self-advocacy movements, which are most strongly associated with people with intellectual disabilities and mental health disorders. These movements have supported people with disabilities to live as more active participants in society.

Access to education and employment

Access to education and employment have also been a major focus of the disability rights movement. Adaptive technologies, enabling people to work jobs they could not have previously, help create access to jobs and economic independence. Access in the classroom has helped improve education opportunities and independence for people with disabilities.

Freedom from discrimination and abuse

Freedom from abuse, neglect, and violations of a person's rights are also important goals of the disability rights movement. Abuse and neglect includes inappropriate seclusion and restraint, inappropriate use of force by staff and/or providers, threats, harassment and/or retaliation by staff or providers, failure to provide adequate nutrition, clothing, and/or medical and mental health care, and/or failure to provide a clean and safe living environment, as well as other issues which pose a serious threat to the physical and psychological well-being of a person with a disability. Violations of patients' rights include failure to obtain informed consent for treatment, failure to maintain the confidentiality of treatment records, and inappropriate restriction of the right to communicate and associate with others, as well as other restrictions of rights.

As a result of the work done through the disability rights movement, significant disability rights legislation was passed in the 1970s through the 1990s in the U.S.

Major Events

Canada

Canada's largest province, Ontario created legislation, Accessibility for Ontarians with Disabilities Act, 2005 with the goals of becoming accessible by 2025.

In 2019, the Accessible Canada Act became law. This is the first national legislation on accessibility that affects all government departments and federally regulated agencies.

India

The Rights of Persons with Disabilities Act, 2016 is the disability legislation passed by the Indian Parliament to fulfill its obligation to the United Nations Convention on the Rights of Persons with Disabilities, which India ratified in 2007. The Act replaces the existing Persons with Disabilities Act, 1995. It came into effect on 28 December, 2016. This Law recognizes 21 disabilities.

United Kingdom

Disability rights activist outside Scottish Parliament, 30 March 2013

In the United Kingdom, following extensive activism by people with disabilities over several decades, the Disability Discrimination Act 1995 (DDA 1995) was passed. This made it unlawful in the United Kingdom to discriminate against people with disabilities in relation to employment, the provision of goods and services, education and transport. The Equality and Human Rights Commission provides support for this Act. Equivalent legislation exists in Northern Ireland, which is enforced by the Northern Ireland Equality Commission.

Following the introduction of the Bedroom Tax (officially the Under-occupancy penalty) in the Welfare Reform Act 2012, disability activists have played a significant role in the development of Bedroom Tax protests. A wide range of benefit changes are estimated to affect disabled people disproportionately and to compromise disabled people's right to independent living.

United States

In 1948, a watershed for the movement was the proof of the existence of physical and program barriers. The proof was provided as a specification for barrier free usable facilities for people with disabilities. The specifications provided the minimum requirements for barrier free physical and program access. An example of barriers are; providing only steps to enter buildings; lack of maintenance of walkways; locations not connected with public transit; lack of visual and hearing communications ends up segregating individuals with disabilities from independent, participation, and opportunities. The ANSI - Barrier Free Standard (phrase coined by Dr. Timothy Nugent, the lead investigator) called "ANSI A117.1, Making Buildings Accessible to and Usable by the Physically Handicapped", provides the indisputable proof that the barriers exist. The standard is the outcome of physical therapists, bio-mechanical engineers, and individuals with disabilities who developed and participated in over 40 years of research. The standard provides the criteria for modifying programs and the physical site to provide independence. The standard has been emulated globally since its introduction in Europe, Asia, Japan, Australia, and Canada, in the early 1960s.

One of the most important developments of the disability rights movement was the growth of the independent living movement, which emerged in California in the 1960s through the efforts of Edward Roberts and other wheelchair-using individuals. This movement, a subset of the disability rights movement, postulates that people with disabilities are the best experts on their needs, and therefore they must take the initiative, individually and collectively, in designing and promoting better solutions and must organize themselves for political power. Besides de-professionalization and self-representation, the independent living movement's ideology comprises de-medicalization of disability, de-institutionalization, and cross-disability (i.e. inclusion in the independent living movement regardless of diagnoses). Similarly, The Architectural Barriers Act was passed in 1968, mandating that federally constructed buildings and facilities be accessible to people with physical disabilities. This act is generally considered to be the first ever-federal disability rights legislation. Unfortunately for those with cognitive disabilities, their disability made it more difficult to be the best expert of their own needs, hindering their ability to self-advocate as their wheelchair-using counterparts could. Self-representation was much more difficult for those who could not articulate their thoughts, leading to their dependence on others to carry on the movement.

In 1973 the (American) Rehabilitation Act became law; Sections 501, 503, and 504 prohibited discrimination in federal programs and services and all other programs or services receiving federal funds. Key language in the Rehabilitation Act, found in Section 504, states “No otherwise qualified handicapped [sic] individual in the United States, shall, solely by reason of his [sic] handicap [sic], be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” This was the first civil rights law guaranteeing equal opportunity for people with disabilities.

Another crucial turning point was the 504 Sit-in in 1977 of government buildings operated by the United States Department of Health, Education, and Welfare (HEW), conceived by Frank Bowe and organized by the American Coalition of Citizens with Disabilities, that led to the release of regulations pursuant to Section 504 of the Rehabilitation Act of 1973. On April 5, 1977, activists began to demonstrate and some sat-in in the offices found in ten of the federal regions including New York City, Los Angeles, Boston, Denver, Chicago, Philadelphia, and Atlanta. One of the most noteworthy protests occurred in San Francisco. The protesters demanded the signing of regulations for Section 504 of the Rehabilitation Act of 1973.The successful sit-in was led by Judith Heumann. The first day of protests marked the first of a 25-day sit-in. Close to 120 disability activists and protesters occupied the HEW building, and Secretary Joseph Califano finally signed on April 28, 1977. This protest was significant not only because its goal was achieved, but also because it was the foremost concerted effort between people of different disabilities coming together in support of legislation that affected the overall disability population, rather than only specific groups.

In 1978 disability rights activists in Denver, Colorado, organized by the Atlantis Community, held a sit-in and blockade of the Denver Regional Transit Authority buses in 1978. They were protesting the fact that city’s transit system was completely inaccessible for the physically disabled. This action proved to be just the first in a series of civil disobedience demonstrations that lasted for a year until the Denver Transit Authority finally bought buses equipped with wheelchair lifts. In 1983, Americans Disabled for Accessible Public Transit (ADAPT) was responsible for another civil disobedience campaign also in Denver that lasted seven years. They targeted the American Public Transport Association in protest of inaccessible public transportation; this campaign ended in 1990 when bus lifts for people using wheelchairs were required nationwide by the Americans with Disabilities Act.

Another significant protest related to disability rights was the Deaf President Now protest by the Gallaudet University students in Washington, D.C. in March 1988. The 8-day (March 6 – March 13) demonstration and occupation and lock-out of the school began when the Board of Trustees appointed a new hearing President, Elisabeth Zinser, over two Deaf candidates. The students’ primary grievance was that the university, which was dedicated to the education of people who are Deaf, had never had a Deaf president, someone representative of them. Of the protesters’ four demands, the main one was the resignation of the current president and the appointment of a Deaf one. The demonstration consisted of about 2,000 student and nonstudent participants. The protests took place on campus, in government buildings, and in the streets. In the end, all the students’ demands were met and I. King Jordan was appointed the first Deaf President of the university.

In 1990, the Americans with Disabilities Act became law, and it provided comprehensive civil rights protection for people with disabilities. Closely modeled after the Civil Rights Act and Section 504, the law was the most sweeping disability rights legislation in American history. It mandated that local, state, and federal governments and programs be accessible, that employers with more than 15 employees make “reasonable accommodations” for workers with disabilities and not discriminate against otherwise qualified workers with disabilities, and that public accommodations such as restaurants and stores not discriminate against people with disabilities and that they make reasonable modifications to ensure access for disabled members of the public. The act also mandated access in public transportation, communication, and in other areas of public life.

The first Disability Pride March in the United States was held in Boston in 1990. A second Disability Pride March was held in Boston in 1991. There were no subsequent Disability Pride Marches/Parades for many years, until Chicago on Sunday, July 18, 2004. It was funded with $10,000 in seed money that Sarah Triano received in 2003 as part of the Paul G. Hearne Leadership award from the American Association of People with Disabilities. According to Triano, fifteen hundred people attended the parade. Yoshiko Dart was the parade marshal.

Exhibitions and collections

To mark the 10th anniversary of the Americans with Disabilities Act, the Smithsonian Institution National Museum of American History opened an exhibition that examined the history of activism by people with disabilities, their friends, and families to secure the civil rights guaranteed to all Americans. Objects on view included the pen President George H.W. Bush used to sign the Act and one of the first ultralight wheelchairs. The exhibition was designed for maximum accessibility. Web-based kiosks - prototypes for a version that will eventually be available to museums and other cultural institutions - provided alternate formats to experience the exhibition. The exhibition was open from July 6, 2000 to July 23, 2001.

Debates and Approaches

A key debate in the disability rights movement is between affirmative action for persons with disabilities versus fighting for equitable treatment. According to a 1992 polling organization, many fear that integrating people with disabilities into the workplace may affect their company image, or it may result in decreased productivity. This coincides with the 1992 parliamentary review of the Employment Equity Act, which stated that employers should look to implement equity without having an official quota system. This remains an ongoing debate.

An additional debate is between institutionalizing persons with disabilities versus supporting them in their homes. In 1963 during John F. Kennedy’s presidency, he transformed the national view of mental health by boosting funding for community-based programs and drafting legislation for mental health care. He also created the President's Panel on Mental Retardation, which created recommendations for new programs that governments can implement on a state level, therefore moving away from "custodial institutions". This shift away from institutionalization has generated a long-lasting stigma against mental health institutions, which is why in politics there is often not enough funding for this concept.

According to the US Supreme Court case Humphrey v. Cady, civil commitment laws and eligibility for intervention exist only in the instance when the person is ruled an immediate danger to themself or others. The difficulty of proving "immediate danger" has led to the unexpected outcome that it is harder to commit mentally ill patients to hospital and easier to send them to prison. According to the National Alliance on Mental Illness, about 15% male inmates and 30% female inmates have some kind of serious mental illness, which remains untreated.

Another ongoing debate is how to cultivate self-determination for persons with disabilities. Article 1 of the United Nations Charter asserts that "All peoples have the right to self-determination" with free will. 

Because this highlights the concept of free and autonomous choice, one argument is that any government interference deters self-determination, thus leaving it to persons with disabilities to seek out any help they need from charities and nonprofit organizations. Charitable organizations such as Christian or Catholic dominations believe in helping persons with disabilities with nothing in return. On the other hand, another approach is a participatory, symbiotic relationship, which include methods like professional development and resource provisions. More specifically, one approach is to allow persons with disabilities to self-articulate their needs and generate their own solutions and analyses. Instead of passive participation, which is participation by being told what to do or what has been done, this approach proposes to allow this group to be self-sufficient and make their own decisions. Barriers to this include defining who is a self-sufficient individual with a disability, circling back to the concept of self-determination.

Ableism

From Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Ableism 

Ableism (/ˈeɪbəlɪzəm/; also known as ablism, disablism (Brit. English), anapirophobia, anapirism, and disability discrimination) is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations.

There are stereotypes, generally inaccurate, associated with either disability in general, or with specific disabilities (for instance a presumption that all disabled people want to be cured, that wheelchair users necessarily have an intellectual disability or that blind people have some special form of insight). These stereotypes, in turn, serve as a justification for ableist practices and reinforce discriminatory attitudes and behaviors toward people who are disabled. Labeling affects people when it limits their options for action or changes their identity.

In ableist societies, people with disabilities are viewed as less valuable, or even seen as expendable. The eugenics movement of the early 20th century would be considered an example of widespread ableism.

Ableism can also be better understood by reading literature published by those who experience disability and ableism first-hand. Disability Studies is an academic discipline that is also beneficial to explore to gain a better understanding of ableism.

Etymology

Originated from -able (in disable, disabled) and -ism (in racism, sexism); first known use in 1985–1990. 

History

Canada

Ableism in Canada refers to a set of discourses, behaviors, and structures that express feelings of anxiety, fear, hostility, and antipathy towards people with disabilities in Canada.

The specific types of discrimination that have occurred or are still occurring in Canada include the inability to access important facilities such as infrastructure within the transport network, restrictive immigration policies, involuntary sterilization to stop people with disabilities from having offspring, barriers to employment opportunities, wages that are insufficient to maintain a minimal standard of living, and institutionalization of people with disabilities in substandard conditions.

Austerity measures implemented by the government of Canada have also at times been referred to as ableist, such as funding cuts that put people with disabilities at risk of living in abusive arrangements.

Nazi Germany

In 1939 Hitler signed the secret euthanasia program decree, Aktion T4, which authorized the killing of selected patients diagnosed with chronic neurological and psychiatric disorders. This program killed about 70,000 people with disabilities before it was officially halted by Hitler in 1941 under public pressure, and it was unofficially continued out of the public eye, killing a total of 200,000 or more by the end of Hitler's reign in 1945.

United Kingdom

A poster of the British suffrage movement, attacking the fact that women were placed next to "lunatics" and convicts in being unable to vote. Ableist and eugenicist ideas were often found in suffrage rhetoric.

In the UK, disability discrimination became unlawful as a result of the Disability Discrimination Act 1995, and the Disability Discrimination Act 2005. These were later superseded, retaining the substantive law, by the Equality Act 2010. The Equality Act 2010 brought together protections against multiple areas of discriminatory behavior (disability, race, religion and belief, gender, sexual orientation, gender identity, age and pregnancy – the so-called 'protected characteristics').

Under EA2010 there are prohibitions addressing several forms of discrimination: direct discrimination (s.13(1) Equality Act 2010), indirect discrimination (s.6 and s.19 Equality Act 2010, harassment (s.26 Equality Act 2010), victimisation (s.27(2) Equality Act 2010), discrimination arising from disability (s.15(1) Equality Act 2010 and failure to make reasonable adjustments (s.20 Equality Act 2010).

Part 2, Chapter 1, Section 6, of the Equality Act 2010 states that:

“A person P has a disability if

(a) P has a physical or mental impairment, and

(b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities.“

(Please note that as with any English, for the purposes of the interpretation of the Equality Act 2010, and, for the purposes of righteousness, both phonetically and otherwise derived undertones apparently implied by the nomenclature and numbering manifest in the phrase “Part 2, Chapter 1, Section 6” as well as in the abbreviated “P” which takes the place of “person” in the document, are irrelevant.)

United States

Before the 1800s, the perspective of disability was often from a religious point of view. Individuals with disability were seen as evil or possessed by the devil. Much like many minority groups, disabled Americans were often segregated and denied certain rights for a majority of American history. In the 1800s, a shift from a religious view to a more scientific view took place and caused more individuals with disabilities to be examined. Public stigma began to change after World War II when many Americans returned home with disabilities and physical handicaps. In the 1960s, following the civil rights movement in America, the world began the disabled rights movement. The movement was intended to give all individuals with disabilities equal rights and opportunities. Until the 1970s, ableism in the United States was often codified into law. For example, in many jurisdictions, so-called "ugly laws" barred people from appearing in public if they had diseases or disfigurements that were considered unsightly.

Rehabilitation Act of 1973

Section 504 and other sections of the Rehabilitation Act of 1973 enacted into law certain civil penalties for failing to make public places comply with access codes known as the ADA Access Guidelines (ADAAG). These laws prohibit direct discrimination against disabled people in government programs, employment, public transit, and public accommodations like stores and restaurants.

Voting Accessibility for the Elderly and Handicapped Act of 1984

The Voting Accessibility for the Elderly and Handicapped Act was passed to promote the fundamental right to vote by improving access for handicapped and elderly individuals to registration facilities and polling places for Federal elections by requiring access to polling places used in Federal elections and available registration and voting aids, such as instructions in large type. 

Fair Housing Amendments Act of 1988

The federal Fair Housing Amendments Act of 1988 prohibits housing discrimination on the basis of mental or physical disability and requires that newly constructed multi-family housing meet certain access guidelines while requiring landlords to allow disabled persons to modify existing dwellings for accessibility. The law also protects people with mental disabilities by prohibiting discrimination in housing and allowing people with mental illness or any other disability to live where they choose.

Americans with Disabilities Act of 1990

The Americans with Disabilities Act of 1990 (ADA) was passed on July 26, 1990, during the George H. W. Bush administration and amended on January 1, 2009. The act gave individuals with disabilities civil rights protections.

Individuals with Disabilities Education Act

The Individuals with Disabilities Education Act (IDEA) is a four-part (A-D) piece of American legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs. IDEA was previously known as the Education for All Handicapped Children Act (EHA) from 1975 to 1990. In 1990, the United States Congress reauthorized EHA and changed the title to IDEA (Public Law No. 94-142). Overall, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability.

Workplace

In 1990, the Americans with Disabilities Act was put in place to prohibit private employers, state and local government, employment agencies and labor unions from discrimination against qualified individuals with disabilities in job applications, when hiring, firing, advancement in workplace, compensation, training, and on other terms, conditions and privileges of employment. The U.S. Equal Employment Opportunity Commission, also known as the EEOC also plays a part in fighting against ableism by being responsible for enforcing federal laws that make it illegal to discriminate against a job applicant or an employee because of the person's race, color, religion, sex (including pregnancy, gender identity, and sexual orientation), national origin, age (40 or older), disability or genetic information. Despite legislation to reduce disability discrimination, roughly 13.3 million Americans with disabilities report difficulty finding a job.

Healthcare

In England, Scotland and Wales it is permitted for an abortion to be performed on the basis of the foetus having physical or mental abnormalities.

Schools

Ableism often makes the world unwelcoming, and inaccessible to people with disabilities - especially in schools. An ableist would assert that children with disabilities need to assimilate to the normative culture. For example, a student who experiences a disability needs to read text instead of listening to a tape recording of the text. In the past, schools have focused too much on fixing the disability, but due to progressive reforms, schools are now focused on minimizing the impact of a student’s disability, and giving support, skills, and more opportunities to live a full life. Moreover, schools are required to maximize access to their entire community. In 2004, Congress made into law the Individuals with Disabilities Education Act, which states that free and appropriate education is eligible to children with disabilities with insurance of necessary services. Congress later amended the law, in 2015, to include the Every Student Succeeds Act, which guarantees equal opportunity for people with disabilities full participation in society, and the tools for overall independent success.

Media

Disabilities are not only misrepresented in the media but often underrepresented as well. These common ways of framing disability are heavily criticized for being dehumanizing and failing to place importance on the perspectives of persons with disabilities. While roughly 20 percent of the population is disabled, only 2 percent of characters played in television and film have a disability. 95 percent of the time, disabled characters are played by actors and actresses who are not disabled.

Disabled villain

One common form of media depiction of disability is to portray villains with a mental or physical disability. Lindsey Row-Heyveld notes, for instance, "that villainous pirates are scraggly, wizened, and inevitably kitted out with a peg leg, eye patch, or hook hand whereas heroic pirates look like Johnny Depp's Jack Sparrow." The disability of the villain is meant to separate them from the average viewer and dehumanize the antagonist. As a result, stigma forms surrounding the disability and the individuals that live with it.

Inspiration porn

Inspiration porn is the use of people with disabilities performing ordinary tasks as a form of inspiration. Criticisms of inspiration porn say that it distances people with disabilities from individuals who are not disabled and portrays disability as an obstacle to overcome or rehab.

Pitied character

In many forms of media such as films and articles a person who experiences disability is portrayed as a character who is viewed as less than able, different, and an "outcast." Hayes & Black (2003) explore Hollywood films as the discourse of pity towards disability as a problem of social, physical, and emotional confinement. The aspect of pity is heightened through the storylines of media focusing on the individual's weaknesses as opposed to strengths and therefore leaving audiences a negative and ableist portrayal towards disability.

Supercrip stereotype

The supercrip narrative is generally a story of a person with an apparent disability who is able to "overcome" their physical differences and somehow accomplish an impressive task. In Thomas Hehir's "Eliminating Ableism in Education," he uses the example of a blind man who climbs Mount Everest as an example of the supercrip narrative. The Paralympics are another example of the supercrip stereotype, since they generate a large amount of media attention, and demonstrate disabled people doing extremely strenuous physical tasks. Although at face value, this may appear inspiring, Hehir explains that many people with disabilities can view these news stories as setting unrealistic expectations. Additionally, Hehir mentions that supercrip stories imply that disabled people are required to overcome their disabilities by performing these impressive tasks to be seen as an equal and avoid pity from those without disabilities.

Sports

A runner in the Rio 2016 Paralympic Games

Sports are often an area of society in which ableism is evident. In sports media, athletes with disabilities are often portrayed to be inferior. When athletes with disabilities are discussed in the media, there is often an emphasis on rehabilitation and the road to recovery, which is inherently a negative view on the disability. Oscar Pistorius is a South African runner who competed in the 2004, 2008, and 2012 Paralympics and the 2012 Olympic games in London. Pistorius was the first double amputee athlete to compete in the Olympic games. While media coverage focused on inspiration and competition during his time in the Paralympic games, it shifted to questioning whether his prosthetic legs gave him an advantage while competing in the Olympic games.

Deinstitutionalisation

From Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Deinstitutionalisation 

The former St Elizabeth's Hospital in 2006, closed and boarded up. Located in Washington D.C., the hospital had been one of the sites of the Rosenhan experiment in the 1970s.

Deinstitutionalisation (or deinstitutionalization) is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.

Deinstitutionalisation works in two ways. The first focuses on reducing the population size of mental institutions by releasing patients, shortening stays, and reducing both admissions and readmission rates. The second focuses on reforming psychiatric care to reduce (or avoid encouraging) feelings of dependency, hopelessness and other behaviors that make it hard for patients to adjust to a life outside of care.

The modern deinstitutionalisation movement was made possible by the discovery of psychiatric drugs in the mid-20th century, which could manage psychotic episodes and reduced the need for patients to be confined and restrained. Another major impetus was a series of socio-political movements that campaigned for patient freedom. Lastly, there were financial imperatives, with many governments also viewing it as a way to save costs.

The movement to reduce institutionalisation was met with wide acceptance in Western countries, though its effects have been the subject of many debates. Critics of the policy include defenders of the previous policies as well as those who believe the reforms did not go far enough to provide freedom to patients.

History

19th century

Vienna's Narrenturm—German for "fools' tower"—was one of the earliest buildings specifically designed for mentally ill people. It was built in 1784.

The 19th century saw a large expansion in the number and size of asylums in Western industrialised countries. In contrast to the prison-like asylums of old, these were designed to be comfortable places where patients could live and be treated, in keeping with the movement towards "moral treatment". In spite of these ideals, they became overstretched, non-therapeutic, isolated in location, and neglectful of patients.

20th century

By the beginning of the 20th century, increasing admissions had resulted in serious overcrowding, causing many problems for psychiatric institutions. Funding was often cut, especially during periods of economic decline and wartime. Asylums became notorious for poor living conditions, lack of hygiene, overcrowding, ill-treatment, and abuse of patients; many patients starved to death. The first community-based alternatives were suggested and tentatively implemented in the 1920s and 1930s, although asylum numbers continued to increase up to the 1950s.

Origins of the modern movement

The advent of chlorpromazine and other antipsychotic drugs in the 1950s and 1960s played an important role in permitting deinstitutionalisation, but it was not until social movements campaigned for reform in the 1960s that the movement gained momentum.

A key text in the development of deinstitutionalisation was Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, a 1961 book by sociologist Erving Goffman. The book is one of the first sociological examinations of the social situation of mental patients, the hospital. Based on his participant observation field work, the book details Goffman's theory of the "total institution" (principally in the example he gives, as the title of the book indicates, mental institutions) and the process by which it takes efforts to maintain predictable and regular behavior on the part of both "guard" and "captor," suggesting that many of the features of such institutions serve the ritual function of ensuring that both classes of people know their function and social role, in other words of "institutionalizing" them.

Franco Basaglia, a leading Italian psychiatrist who inspired and was the architect of the psychiatric reform in Italy, also defined mental hospital as an oppressive, locked and total institution in which prison-like, punitive rules are applied, in order to gradually eliminate its own contents, and patients, doctors and nurses are all subjected (at different levels) to the same process of institutionalism. Other critics went further and campaigned against all involuntary psychiatric treatment. In 1970, Goffman worked with Thomas Szasz and George Alexander to found the American Association for the Abolition of Involuntary Mental Hospitalisation (AAAIMH), who proposed abolishing all involuntary psychiatric intervention, particularly involuntary commitment, against individuals. The association provided legal help to psychiatric patients and published a journal, The Abolitionist, until it was dissolved in 1980.

Reform

The prevailing public arguments, time of onset, and pace of reforms varied by country. Leon Eisenberg lists three key factors that led to deinstitutionalisation gaining support. The first factor was a series of socio-political campaigns for the better treatment of patients. Some of these were spurred on by institutional abuse scandals in the 1960s and 1970s, such as Willowbrook State School in the United States and Ely Hospital in the United Kingdom. The second factor was new psychiatric medications made it more feasible to release people into the community and the third factor was financial imperatives. There was an argument that community services would be cheaper. Mental health professionals, public officials, families, advocacy groups, public citizens, and unions held differing views on deinstitutionalisation.

However, the 20th Century marked the development of the first community services designed specifically to divert deinstitutionalization and to develop the first conversions from institutional, governmental systems to community majority systems (governmental-NGO-For Profit). These services are so common throughout the world (e.g., individual and family support services, groups homes, community and supportive living, foster care and personal care homes, community residences, community mental health offices, supported housing) that they are often "delinked" from the term deinstitutionalization. Common historical figures in deinstitutionalization in the US include Geraldo Rivera, Robert Williams, Burton Blatt, Gunnar Dybwad, Michael Kennedy, Frank Laski, Steven J. Taylor, Douglas P. Biklen, David Braddock, Robert Bogdan and K. C. Lakin. in the fields of "intellectual disabilities" (e.g., amicus curae, Arc-US to the US Supreme Court; US state consent decrees).

Community organizing and development regarding the fields of mental health, traumatic brain injury, aging (nursing facilities) and children's institutions/private residential schools represent other forms of diversion and "community re-entry". Paul Carling's book, Return to the Community: Building Support Systems for People with Psychiatric Disabilities describes mental health planning and services in that regard, including for addressing the health and personal effects of "long term institutionalization". and the psychiatric field continued to research whether "hospitals" (e.g., forced involuntary care in a state institution; voluntary, private admissions) or community living was better. US states have made substantial investments in the community, and similar to Canada, shifted some but not all institutional funds to the community sectors as deinstitutionalization. For example, NYS Education, Health and Social Services Laws identify mental health personnel in the state of New York, and the two term Obama Presidency in the US created a high-level Office of Social and Behavioral Services.

The 20th Century marked the growth in a class of deinstitutionalization and community researchers in the US and world, including a class of university women. These women follow university education on social control and the myths of deinstitutionalization, including common forms of transinstitutionalization such as transfers to prison systems in the 21st Century, "budget realignments", and the new subterfuge of community data reporting.

Consequences

Community services that developed include supportive housing with full or partial supervision and specialised teams (such as assertive community treatment and early intervention teams). Costs have been reported as generally equivalent to inpatient hospitalisation, even lower in some cases (depending on how well or poorly funded the community alternatives are). Although deinstitutionalisation has been positive for the majority of patients, it also has shortcomings.

Criticism of deinstitutionalisation takes two forms. Some, like E. Fuller Torrey, defend the use of psychiatric institutions and conclude that deinstitutionalisation was a move in the wrong direction. Others, such as Walid Fakhoury and Stefan Priebe, argue that it was an unsuccessful move in the right direction, suggesting that modern day society faces the problem of "reinstitutionalisation". While coming from opposite viewpoints, both sets of critics argue that the policy left many patients homeless or in prison. Leon Eisenberg has argued that deinstitutionalisation was generally positive for patients, while noting that some were left homeless or without care.

Misconceptions

There is a common perception by the public and media that people with mental disorders are more likely to be dangerous and violent if released into the community. However, a large 1998 study in Archives of General Psychiatry suggested that discharged psychiatric patients without substance abuse symptoms are no more likely to commit violence than others without substance abuse symptoms in their neighborhoods, which were usually economically deprived and high in substance abuse and crime. The study also reported that a higher proportion of the patients than of the others in the neighborhoods reported symptoms of substance abuse.

Findings on violence committed by those with mental disorders in the community have been inconsistent and related to numerous factors; a higher rate of more serious offences such as homicide have sometimes been found but, despite high-profile homicide cases, the evidence suggests this has not been increased by deinstitutionalisation. The aggression and violence that does occur, in either direction, is usually within family settings rather than between strangers.

Adequacy of treatment and support

Common criticisms of the new community services are that they have been uncoordinated, underfunded and unable to meet complex needs. Problems with coordination arose because care was being provided by multiple for-profit businesses, non-profit organizations and multiple levels of government.

Torrey has opposed deinstitutionalisation in principle, arguing that people with mental illness will be resistant to medical help due to the nature of their conditions. These views have made him a controversial figure in psychiatry. He believes that reducing psychiatrists' powers to use involuntary commitment led to many patients losing out on treatment, and that many who would have previously lived in institutions are now homeless or in prison.

Other critics argue that deinstitutionalisation had laudable goals, but some patients lost out on care due to problems in the execution stage. In a 1998 study of the effects of deinstitutionalisation in the United Kingdom, Means and Smith argue that the program had some successes, such as increasing the participation of volunteers in mental healthcare, but that it was underfunded and let down by a lack of coordination between the health service and social services.

Reinstitutionalisation

Some mental health academics and campaigners have argued that deinstitutionalisation was well-intentioned for trying to make patients less dependent on psychiatric care, but in practice patients were still left being dependent on the support of a mental healthcare system, a phenomenon known as "reinstitutionalisation" or "transinstitutionalisation".

The argument is that community services can leave the mentally ill in a state of social isolation (even if it is not physical isolation), frequently meeting other service users but having little contact with the rest of the public community. Fakhoury and Priebe said that instead of "community psychiatry", reforms established a "psychiatric community". Julie Racino argues that having a closed social circle like this can limit opportunities for mentally ill people to integrate with the wider society, such as personal assistance services.

Thomas Szasz, a longtime opponent of involuntary psychiatric treatment, argued that the reforms never addressed the aspects of psychiatry that he objected to, particularly his belief that mental illnesses are not true illnesses but medicalized social and personal problems.

Medication

There was an increase in prescriptions of psychiatric medication in the years following deinstitutionalization. Although most of these drugs had been discovered in the years before, deinstitutionalisation made it far cheaper to care for a mental health patient and increased the profitability of the drugs. Some researchers argue that this created economic incentives to increase the frequency of psychiatric diagnosis (and related diagnoses, such as ADHD in children) that did not happen in the era of costly hospitalized psychiatry.

In most countries (except some countries that are either in extreme poverty or are hindered from importing psychiatric drugs by their customs regulations), more than 10% of the population are now on some form of psychiatric medicine. This increases to more than 15% in some countries such as the United Kingdom. A 2012 study by Kales, Pierce and Greenblatt argued that these medicines were being overprescribed.

Victimisation

Moves to community living and services have led to various concerns and fears, from both the individuals themselves and other members of the community. Over a quarter of individuals accessing community mental health services in a US inner-city area are victims of at least one violent crime per year, a proportion eleven times higher than the inner-city average. The elevated victim rate holds for every category of crime, including rape/sexual assault, other violent assaults, and personal and property theft. Victimisation rates are similar to those with developmental disabilities.

Worldwide

Asia

Hong Kong

In Hong Kong, a number of residential care services such as halfway houses, long-stay care homes, supported hostels are provided for the discharged patients. In addition, community support services such as rehabilitation day services and mental health care have been launched to facilitate the patients' re-integration into the community.

Japan

Unlike most developed countries, Japan has not followed a program of deinstitutionalisation. The number of hospital beds has risen steadily over the last few decades. Physical restraints are used far more often. In 2014, more than 10,000 people were restrained–the highest ever recorded, and more than double the number a decade earlier. In 2018, the Japanese Ministry of Health introduced revised guidelines that placed more restrictions against the use of restraints.

Africa

Uganda has one psychiatric hospital. There are only 40 psychiatrists in Uganda. The World Health Organisation estimates that 90% of mentally ill people here never get treatment.

Australia and Oceania

New Zealand

New Zealand established a reconciliation initiative in 2005 to address the ongoing compensation payouts to ex-patients of state-run mental institutions in the 1970s to 1990s. A number of grievances were heard, including: poor reasons for admissions; unsanitary and overcrowded conditions; lack of communication to patients and family members; physical violence and sexual misconduct and abuse; inadequate mechanisms for dealing with complaints; pressures and difficulties for staff, within an authoritarian hierarchy based on containment; fear and humiliation in the misuse of seclusion; over-use and abuse of ECT, psychiatric medications, and other treatments as punishments, including group therapy, with continued adverse effects; lack of support on discharge; interrupted lives and lost potential; and continued stigma, prejudice, and emotional distress and trauma.

There were some references to instances of helpful aspects or kindnesses despite the system. Participants were offered counselling to help them deal with their experiences, along with advice on their rights, including access to records and legal redress.

Europe

Italy

Italy was the first country to begin the deinstitutionalisation of mental health care and to develop a community-based psychiatric system. The Italian system served as a model of effective service and paved the way for deinstitutionalisation of mental patients. Since the late 1960s, the Italian physician Giorgio Antonucci questioned the basis itself of psychiatry. After working with Edelweiss Cotti in 1968 at the Centro di Relazioni Umane in Cividale del Friuli – an open ward created as an alternative to the psychiatric hospital – from 1973 to 1996 Antonucci worked on the dismantling of the psychiatric hospitals Osservanza and Luigi Lolli of Imola and the liberation – and restitution to life – of the people there secluded. In 1978, the Basaglia Law had started Italian psychiatric reform that resulted in the end of the Italian state mental hospital system in 1998.

The reform was focused on the gradual dismantlement of psychiatric hospitals, which required an effective community mental health service. The object of community care was to reverse the long-accepted practice of isolating the mentally ill in large institutions and to promote their integration in a socially stimulating environment, while avoiding subjecting them to excessive social pressures.

The work of Giorgio Antonucci, instead of changing the form of commitment from the mental hospital to other forms of coercion, questions the basis of psychiatry, affirming that mental hospitals are the essence of psychiatry and rejecting any possible reform of psychiatry, that must be completely eliminated.

United Kingdom

The water tower of Park Prewett Hospital in Basingstoke, Hampshire. The hospital was redeveloped into a housing estate after its closure in 1997.

In the United Kingdom, the trend towards deinstitutionalisation began in the 1950s. At the time, 0.4% of the population of England were housed in asylums. The government of Harold Macmillan sponsored the Mental Health Act 1959, which removed the distinction between psychiatric hospitals and other types of hospitals. Enoch Powell, the Minister of Health in the early 1960s, criticized psychiatric institutions in his 1961 "Water Tower" speech and called for most of the care to be transferred to general hospitals and the community. The campaigns of Barbara Robb and several scandals involving mistreatment at asylums (notably Ely Hospital) furthered the campaign. The Ely Hospital scandal led to an inquiry led by Brian Abel-Smith and a 1971 white paper that recommended further reform.

The policy of deinstitutionalisation came to be known as Care in the Community at the time it was taken up by the government of Margaret Thatcher. Large-scale closures of the old asylums began in the 1980s. By 2015, none remained.

North America

United States

President John F. Kennedy signs the Community Mental Health Act.

The United States has experienced two main waves of deinstitutionalisation. The first wave began in the 1950s and targeted people with mental illness. The second wave began roughly 15 years later and focused on individuals who had been diagnosed with a developmental disability. Loren Mosher argues that deinstitutionalisation fully began in the 1970s and was due to financial incentives like SSI and Social Security Disability, rather than after the earlier introduction of psychiatric drugs.

The most important factors that led to deinstitutionalisation were changing public attitudes to mental health and mental hospitals, the introduction of psychiatric drugs and individual states' desires to reduce costs from mental hospitals. The federal government offered financial incentives to the states to achieve this goal. Stroman pinpoints World War II as the point when attitudes began to change. In 1946, Life magazine published one of the first exposés of the shortcomings of mental illness treatment. Also in 1946, Congress passed the National Mental Health Act of 1946, which created the National Institute of Mental Health (NIMH). NIMH was pivotal in funding research for the developing mental health field.

President John F. Kennedy had a special interest in the issue of mental health because his sister, Rosemary, had incurred brain damage after being lobotomised at the age of 23. His administration sponsored the successful passage of the Community Mental Health Act, one of the most important laws that led to deinstitutionalization. The movement continued to gain momentum during the Civil Rights Movement. The 1965 amendments to Social Security shifted about 50% of the mental health care costs from states to the federal government, motivating state governments to promote deinstitutionalization. The 1970s saw the founding of several advocacy groups, including Liberation of Mental Patients, Project Release, Insane Liberation Front, and the National Alliance on Mental Illness (NAMI).

The lawsuits these activist groups filed led to some key court rulings in the 1970s that increased the rights of patients. In 1973, a federal district court ruled in Souder v. Brennan that whenever patients in mental health institutions performed activity that conferred an economic benefit to an institution, they had to be considered employees and paid the minimum wage required by the Fair Labor Standards Act of 1938. Following this ruling, institutional peonage was outlawed. In the 1975 ruling O'Connor v. Donaldson, the U.S. Supreme Court restricted the rights of states to incarcerate someone who was not violent. This was followed up with the 1978 ruling Addington v. Texas, further restricting states from confining anyone involuntarily for mental illness. In 1975, the United States Court of Appeals for the First Circuit ruled in favour of the Mental Patient's Liberation Front in Rogers v. Okin, establishing the right of a patient to refuse treatment. Later reforms included the Mental Health Parity Act, which required health insurers to give mental health patients equal coverage.

Other factors included scandals. A 1972 television broadcast exposed the abuse and neglect of 5,000 patients at the Willowbrook State School in Staten Island, New York. The Rosenhan's experiment in 1973 caused several psychiatric hospitals to fail to notice fake patients who showed no symptoms once they were institutionalized. The pitfalls of institutionalization were dramatized in an award-winning 1975 film, One Flew Over the Cuckoo's Nest.

In 1955, for every 100,000 US citizens there were 340 psychiatric hospital beds. In 2005 that number had diminished to 17 per 100,000.

South America

In several South American countries,, such as in Argentina, the total number of beds in asylum-type institutions has decreased, replaced by psychiatric inpatient units in general hospitals and other local settings.

In Brazil, there are 6003 psychiatrists, 18,763 psychologists, 1985 social workers, 3119 nurses and 3589 occupational therapists working for the Unified Health System (SUS). At primary care level, there are 104,789 doctors, 184, 437 nurses and nurse technicians and 210,887 health agents. The number of psychiatrists is roughly 5 per 100,000 inhabitants in the Southeast region, and the Northeast region has less than 1 psychiatrist per 100,000 inhabitants. The number of psychiatric nurses is insufficient in all geographical areas, and psychologists outnumber other mental health professionals in all regions of the country. The rate of beds in psychiatric hospitals in the country is 27.17 beds per 100,000 inhabitants. The rate of patients in psychiatric hospitals is 119 per 100,000 inhabitants. The average length of stay in mental hospitals is 65.29 days.