Self-advocacy

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Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. [1] The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.

Contents

History

Founding of the movement

The self-advocacy movement began in the late 1960s. Before this, most organizations were run by parents of children with developmental disabilities, such as the March of Dimes, which began in the 1950s. [2] The first self-advocacy group originated in Sweden in the late 1960s where Dr. Bengt Nirje organized a club where people with disabilities and without could meet up, decide where they wanted to go, go on an outing and then meet to discuss their experiences. Nirje wanted to provide people with disabilities "normal" experiences in the community. Previously at this time, people with developmental disabilities were not considered able to make any decisions, including about where they wanted to go, and this program indicated a drastic departure. Nirje believed that people with developmental disabilities should be allowed to make decisions, and crucially also allowed to make mistakes, saying "To be allowed to be human means to be allowed to fail." [3] This concept is called the dignity of risk and remains one of the central values of the self-advocacy movement. [4] In 1968, a conference was held in Sweden as part of the normalization model where people with intellectual and developmental disabilities came together to discuss their lives, their opinions and their hopes. In 1969, the first ever training was held to teach adults with developmental disabilities how to advocate for themselves politically. One man at the training said, "...I would like to organize because I know how much our comrades at the institutional schools need help to be more respected." [3]

In 1969, Nirje presented about these achievements to the 11th World Congress of the International Society for Rehabilitation of the Disabled, saying "This is akin to any decent revolt. Some of the retarded adults themselves definitely want to play a new role in society, to create a new image of themselves in their own eyes, in the eyes of their parents and in the eyes of the general public This struggle for respect and independence is always the normal way to obtain personal dignity and a sense of liberty and equality." [3]

After this, other countries started to plan self-advocacy conferences. England held its first self-advocacy conference in 1972 and Canada in 1973. In the United States, self-advocates from Oregon and Washington planned their own conference held in 1974. At a meeting to plan the conference, one man, argued against the label of "mentally retarded" saying "I want to be known as a person first!" The self-advocates chose People First as a name for the conferences. [5]

self-advocates formed hundreds of groups around the United States and the world. Many of those groups are called People First, but have many other names. [6] In 1990, Self Advocates Becoming Empowered (SABE), the first American national self-advocacy organization was created by self-advocates, including Roland Johnson. [7] SABE maintains a list of self-advocacy groups in the United States. [8]

In the UK, People First London Boroughs was founded following the attendance of a small number of people with learning disabilities (the British term for intellectual disability) at an international conference held in the US. [9]

self-advocacy and institutions

Many people with developmental disabilities were put in institutions as children prior to the 1970s. Doctors recommended this to parents, who often did not have the knowledge or resources to care for their children at home. Institutions were rife with abuse of all kinds. [10] The increasing awareness of the conditions of institutions in the 1960s and 70s intensified efforts to get people with disabilities out of institutions and many of those people joined the burgeoning self-advocacy movement. [6] Roland Johnson spent thirteen years at Pennhurst and went on to become a leader of the movement after his release. [7]

In 1965, then-Senator Robert Kennedy visited Willowbrook, a state institution in New York with a television crew and spoke about the horrifying conditions he witnessed, calling them "snake pit[s]". [11] In 1966, Burton Blatt and Fred Kaplan released Christmas in Purgatory, an photographic essay about the conditions inside five state institutions for developmental disabilities. [12] [13]

Many self-advocates, whether survivors of institutions themselves or not, see getting people with developmental disabilities out of institutions as a priority. In 1974, Terri Lee Halderman and her family sued Pennhurst State School and Hospital for multiple incidents of abuse and the violation of the residents' civil rights. [14] This was the first federal lawsuit against a state institution. The District Court ruled that the patient's rights were violated and the institution must be closed. [15] The institution would not close until 1987. [16]

One of the earliest demonstrations held by self-advocates was a march on Belcherton State School in the 1980s. [17] Many of the protesters were survivors of Belcherton. [18] Belcherton became the first state school to be sued in 1972 when Benjamon Ricci, father of Robert Simpson Ricci, filed a class-action lawsuit claiming that the deplorable conditions violated the residents' human rights. [19] The institution did not close until 1992. [19]

Neurodiversity

Jim Sinclair is credited as the first person to communicate the anti-cure or autism rights perspective in the late 1980s. [20] In 1992, Sinclair co-founded Autism Network International (ANI), which publishes newsletters "written by and for autistic people" with Donna Williams and Kathy Grant, who knew Sinclair through pen pal lists and autism conferences. The first issue of the ANI newsletter Our Voice was distributed online in November 1992 to an audience of mostly neurotypical professionals and parents of young autistic children. The number of autistic people in the organization slowly grew and ANI became a communication network for like-minded autistic people. [21] In 1996, ANI established a yearly retreat and conference for autistic people, which was known as "Autreat" and was held in the United States. [22] The theme of the first conference in 1996 was "Celebrating Autistic Culture" and had close to 60 participants. The success of Autreat later inspired similar autistic retreats, such as the Association for Autistic Community's conference, Autspace, in the US; [23] Autscape in the UK; [24] and Projekt Empowerment in Sweden. [25]

In 1996, Martijn Dekker, an autistic computer programmer from the Netherlands, launched an email list called "Independent Living on the Autism Spectrum" (InLv). The list also welcomed those with "cousin" conditions, such as ADHD, dyslexia, and dyscalculia. [26] American writer Harvey Blume was a member of the list; [26] he described it as embracing "neurological pluralism" in a 1997 article in The New York Times . [27] Blume discussed the concept of "neurological diversity" with Australian sociologist Judy Singer. [28] The term "neurodiversity" was first published in Singer's 1998 Honours thesis [29] [30] and in Blume's 1998 article in The Atlantic . [31] Blume was an early self-advocate who predicted the role the Internet would play in fostering the international neurodiversity movement. [32]

In 2004, autistic researcher Michelle Dawson challenged applied behavior analysis (ABA) on ethical grounds. She testified in Auton v. British Columbia against the British Columbian government's mandatory funding of ABA. [33] The same year, The New York Times covered the autism self-advocacy perspective by publishing Amy Harmon's article, "How about not 'curing' us, some autistics are pleading". [34]

The rise of the Internet has provided more opportunities for disabled and neurodivergent people to connect and organize. Considering the geographical distance, communication and speech patterns of neurodivergent people and the domination of neurotypical and non-disabled professionals, and family members in established organizations, the Internet has provided a valuable space for self-advocates to organize and communicate. [21] Recent research found evidence that autistic self-advocates and self-advocates with an intellectual disability are disadvantaged in many disability/autism rights organisations – tokenism is widespread. [35] Research also shows that poverty, unpaid positions at disability organisations and lack of support are major barriers for many autistic people or people with an intellectual disability who wish to do self-advocacy. [36]

Values and goals

Person first

Being a person first is a value articulated early on in the self-advocacy movement. Many people with I/DD have been dehumanized or treated as less than human throughout their lives. By saying that they are a person first, self-advocates said that they were more than just their disability and that they deserved the same rights and opportunities as people without a disability. [6]

For this reason, many people with intellectual and developmental disabilities prefer person-first language. In person-first language, you would say "people with developmental disabilities" or "person with Down syndrome". [37] A notable exception is autism. Even though autism is a developmental disability, the community tends to prefer identity-first language. [38] [39] In identity-first language, one would say "autistic people" or "autistic person".

The self-advocacy movement is also very against the use of mental retardation, retarded, or any variation of the term. In addition to it not being recognized as a medical diagnosis anymore, there is a great deal of stigma against the term. There is the "Say the Word to End the Word" campaign, which seeks to end the use of the term.

Self-determination

self-determination is the right of all people to make their own choices. Choices were often denied to people with intellectual and developmental disabilities and still are today. People under guardianship do not get to make their own decisions about where they live and how they spend their money. self-advocates work for the replacement of guardianship with supported decision making where people can make their own decisions, with support from friends, family or professionals.

Dignity of risk is the idea that everyone has the right to make mistakes and to take risks. It is related to self-determination, which is about the right to make choices. Many people with I/DD were stopped from making their own decisions, out of fear that they could make bad decisions, but dignity of risk says that the right to take risks and make mistakes is an essential human right. For example, a person with an intellectual disability could go to college, even if they might have trouble passing their classes.

Community living

Community living is the idea that people should live in the community and not in institutions. Institutions segregate people away from their homes, families and friends. They are also rife with abuse and neglect. People with I/DD should receive the supports that they need to live where they want to. This is also a core value of the independent living movement.

Equal employment and education

self-advocates argue for equal opportunities in all areas of life, but especially education and employment.

K–12 education

Before the self-advocacy movement, many people with intellectual and developmental disabilities in the US were not allowed to attend school. Their families had to either keep them at home or send them to an institution. Some institutions were supposed to provide the people there with education. Institutions specifically for people with intellectual and developmental disabilities were called state schools. However, in practice, the education provide was insufficient or nonexistent. These "schools" turned into warehouses, full of abuse and neglect. In 1972, Pennsylvania Association for Retarded Citizens v. Commonwealth of Pennsylvania overturned the state law that forbid children with intellectual disabilities from attending school. It established that states had to provide a free public education for all children. Mills v. Board of Education of District of Columbia ruled that the schools must provide accommodations to students so that they can attend public school. In 1975, President Gerald Ford signed the Education for Handicapped Children Act (now known as the Individuals with Disabilities Education Act). [40] This law entitles all children to receive a free and appropriate public education (FAPE). The law requires schools to provide students with accommodations and support to attend school. The least restrictive environment clause means that students must be, whenever possible, educated in mainstream classrooms with their non-disabled peers. Despite this, many people with intellectual and developmental disabilities are segregated in special education classrooms and not given the accommodations they need to succeed.

Civil Rights

Relationship to other movements

The self-advocacy movement developed alongside other movements, including the civil rights movement seeing a common goal in fighting for equal treatment. John F. Kennedy, in addition to passing civil rights legislation, also assembled a President's Panel on Mental Retardation. [41] self-advocates framed their demands using a rights-based framework. Notable cases against institutions were based on the infringement of their civil rights. [14]

self-advocacy developed concurrently but often separately to the independent living movement and the larger disability rights movement in the 1960s and 1970s. These movements were mostly made up of people with physical disabilities. Ed Roberts described a "hierarchy of disability" where certain disabilities were considered to rank higher than others. In these hierarchies, people with intellectual and developmental disabilities were seen as at the bottom. [42] Bette McMuldren discussed the early independent living movement, saying "I remember even then – and I know independent living programs are still struggling with this now – we were trying to include people who had developmental disabilities, and we were trying to figure out how to do that. You know, certainly there were people who had cerebral palsy. There were a lot of people who had cerebral palsy. People with mental retardation never really got incorporated. But there was always talk about how to build coalitions and how were we going to make that happen." [43]

Related Research Articles

The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities.

Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.

<span class="mw-page-title-main">Neurodiversity</span> Non-pathological explanation of variations in mental functions

The neurodiversity paradigm is a framework for understanding human brain function that recognizes the diversity within sensory processing, motor abilities, social comfort, cognition, and focus as neurobiological differences. This diversity falls on a spectrum of neurocognitive function. The neurodiversity paradigm argues that diversity in human cognition is normal and that some conditions generally classified as disorders, such as autism, are differences and disabilities that are not necessarily pathological.

<span class="mw-page-title-main">Autism rights movement</span> Disability rights movement for autistic people

The autism rights movement, also known as the autistic acceptance movement, is a social movement allied with the disability rights movement. It emphasizes the neurodiversity paradigm, viewing autism as a set of naturally occurring variations in human cognition rather than as a disease to be cured or a disorder to be treated, diverging from the medical model of disability.

Jim Sinclair is an American autistic activist and writer who helped pioneer the neurodiversity movement. Sinclair, along with Xenia Grant and Donna Williams, formed Autism Network International (ANI). Sinclair became the original coordinator of ANI. Sinclair is an advocate for the anti-cure position on autism, arguing that autism is an integral part of a person's identity and should not be cured. Sinclair is intersex and uses Xe/Xem/Xyr pronouns.

Autistic Pride Day is a pride celebration for autistic people held on 18 June each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society.

The following outline is provided as an overview of and topical guide to autism:

Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.

Autistic art is artwork created by autistic artists that captures or conveys a variety of autistic experiences. According to a 2021 article in Cognitive Processing, autistic artists with improved linguistic and communication skills often show a greater degree of originality and attention to detail than their neurotypical counterparts, with a positive correlation between artistic talent and high linguistic functioning. Autistic art is often considered outsider art. Art by autistic artists has long been shown in separate venues from artists without disabilities. The works of some autistic artists have featured in art publications and documentaries and been exhibited in mainstream galleries. Although autistic artists seldom received formal art education in the past, recent inclusivity initiatives have made it easier for autistic artists to get a formal college education. The Aspergers/Autism Network's AANE Artist Collaborative is an example of an art organization for autistic adults.

<span class="mw-page-title-main">Societal and cultural aspects of autism</span>

Societal and cultural aspects of autism or sociology of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood. The autistic community is divided primarily into two camps; the autism rights movement and the pathology paradigm. The pathology paradigm advocates for supporting research into therapies, treatments, and/or a cure to help minimize or remove autistic traits, seeing treatment as vital to help individuals with autism, while the neurodiversity movement believes autism should be seen as a different way of being and advocates against a cure and interventions that focus on normalization, seeing it as trying to exterminate autistic people and their individuality. Both are controversial in autism communities and advocacy which has led to significant infighting between these two camps. While the dominant paradigm is the pathology paradigm and is followed largely by autism research and scientific communities, the neurodiversity movement is highly popular among most autistic people, within autism advocacy, autism rights organizations, and related neurodiversity approaches have been rapidly growing and applied in the autism research field in the last few years.

The Autistic Self Advocacy Network (ASAN) is an American 501(c)(3) nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN advocates for the inclusion of autistic people in decisions that affect them, including: legislation, depiction in the media, and disability services.

Ari Daniel Ne'eman is an American disability rights activist and researcher who co-founded the Autistic Self Advocacy Network in 2006. On December 16, 2009, President Barack Obama announced that Ne'eman would be appointed to the National Council on Disability. After an anonymous hold was lifted, Ne'eman was unanimously confirmed by the United States Senate to serve on the Council on June 22, 2010. He chaired the council's Policy & Program Evaluation Committee making him the first autistic person to serve on the council. In 2015, Ne'eman left the National Council on Disability at the end of his second term. He currently serves as a consultant to the American Civil Liberties Union. He is currently an Assistant Professor at the Department of Health Policy and Management of Harvard University.

Dignity of risk is the idea that self-determination and the right to take reasonable risks are essential for dignity and self esteem and so should not be impeded by excessively-cautious caregivers, concerned about their duty of care.

<span class="mw-page-title-main">Lydia X. Z. Brown</span> Autistic disability rights activist

Lydia X. Z. Brown is an American autistic disability rights activist, writer, attorney, and public speaker who was honored by the White House in 2013. They are the chairperson of the American Bar Association Civil Rights & Social Justice Disability Rights Committee. They are also Policy Counsel for Privacy & Data at the Center for Democracy & Technology, and Director of Policy, Advocacy, & External Affairs at the Autistic Women & Nonbinary Network. In 2022, they unsuccessfully ran for the Maryland House of Delegates in District 7A, losing to state delegate Kathy Szeliga and delegate-elect Ryan Nawrocki.

<span class="mw-page-title-main">Roland Johnson</span> American disabled rights activist (1945–1994)

Roland Johnson was an advocate for the rights of people with disabilities. He was one of the founders of Self Advocates Becoming Empowered (S.A.B.E.), and one of the first chapter presidents of Speaking For Ourselves. He spent 13 years institutionalized at Pennhurst State School and Hospital, until he was released in 1971 following the civil rights case, Halderman v. Pennhurst State School and Hospital.

<span class="mw-page-title-main">Julia Bascom</span> American autism rights activist

Julia Bascom is an American autism rights activist. She is a former executive director of the Autistic Self Advocacy Network (ASAN) and replaced Ari Ne'eman as president of ASAN in early 2017 before stepping down at the end of 2023.

Morénike Giwa Onaiwu is an American educator, author, and autism and HIV advocate. Alongside E. Ashkenazy and Lydia Brown, Onaiwu is an editor of All the Weight of Our Dreams, an anthology of art and writing entirely by autistic people of color published by the Autism Women's Network in June 2017.

Self Advocates Becoming Empowered (SABE) is an American 501(c)(3) non-profit organization made up of self-advocates from every US state. The organization works on issues that are important to people with developmental disabilities including closing institutions and voting, and provides support to local self-advocacy organizations.

The National Council on Severe Autism is an American non-profit organization that advocates for children and adults who require constant, lifelong supervision and support because of severe autism. It was founded in January 2019.

References

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  2. ↑ Cirelli, Cheryl. "Purpose of the March of Dimes". LoveToKnow.
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  5. ↑ "The First Self-Advocacy Conferences". Parallels in Time: A History of Developmental Disabilities. Retrieved Jan 2, 2023.
  6. 1 2 3 ""We Are People First"". Parallels in Time: History of Developmental Disabilities. Retrieved Jan 2, 2023.
  7. 1 2 Rifkin, Glenn (2020-07-31). "Overlooked No More: Roland Johnson, Who Fought to Shut Down Institutions for the Disabled". The New York Times. ISSN   0362-4331 . Retrieved 2023-01-02.
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  26. 1 2 Silberman, Steve (2015-09-23). "Autism Is a Valuable Part of Humanity's Genetic Legacy". Slate Magazine. Retrieved 2019-08-03.
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  36. ↑ Petri, Gabor; Beadle-Brown, Julie; Bradshaw, Jill (2021-07-05). "'Even a Self-Advocate Needs to Buy Milk' – Economic Barriers to Self-Advocacy in the Autism and Intellectual Disability Movement". Scandinavian Journal of Disability Research. 23 (1): 180–191. doi: 10.16993/sjdr.738 . ISSN   1745-3011. S2CID   237804318.
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  38. ↑ "person first language". Archived from the original on 2006-02-13. Retrieved 2023-02-01.
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  40. ↑ "A History of the Individuals With Disabilities Education Act". Individuals with Disabilities Education Act. Retrieved 2023-02-01.
  41. ↑ "The Quiet Revolution". Parallels in Time: History of Developmental Disability. Retrieved Jan 2, 2023.
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  43. ↑ "Builders and Sustainers of the Independent Living Movement in Berkeley : Volume I". oac.cdlib.org. Retrieved 2023-01-02.

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