Self-advocacy

The term self-advocacy, which means speaking up for oneself and one's interests, is used as a name for civil rights movements and mutual aid networks for disabled people. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. In North America the self-advocacy movement is led by a national organization called Self Advocates Becoming Empowered (SABE)^[1] and is supported by organizations such as ACT in the United States,^[2] LiveWorkPlay in Canada and internationally through the organization People First.

History

Disability activism as volunteerism and parent-oriented organizations such as the March of Dimes began in the 1950s.^[3] Disabled children were largely hidden by their parents out of fear of forced rehabilitation.^[4] In the 1960s, disability advocates joined the growing civil rights movement and women’s rights movements to promote equal treatment and challenge stereotypes and generalizations, and disability-rights advocacy began to have a cross-disability focus. People with different kinds of disabilities (physical and mental disabilities, along with sight and hearing disabilities) and different needs came together to fight for a common cause.

In psychiatry, since the 1970s, self-advocacy and patient empowerment have been emphasized.^[5] This emphasis started to advocate for changes in the delivery of services and to encourage patients to take a more active role in their own care.

In the UK, self-advocacy, which followed years of parents' and professionals' advocacy on behalf of people with learning disabilities, is said to have started in 1984 with funding of People First London Boroughs following the attendance of a small number of learning-disabled people at and international conference held in the US.^[6] In the late 1980s, the concept of self-advocacy gained acceptance in influential circles, due to the work of organizations such as Kings Fund, and in the arts, academia and publishing world due to the work of organizations like Yorkshire Arts Circus and academics.^[6] Self-advocacy started to attract serious studies, one of the most notable being Ken Simons’ Sticking up for Ourselves.^[6]

Jim Sinclair is credited as the first person to communicate the anti-cure or autism rights perspective in the late 1980s.^[7] 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.^[8] In 1996, ANI established a yearly retreat and conference for autistic people, which was known as "Autreat" and was held in the United States.^[9] 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;^[10] Autscape in the UK;^[11] and Projekt Empowerment in Sweden.^[12]

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.^[13] American writer Harvey Blume was a member of the list;^[13] he described it as embracing "neurological pluralism" in a 1997 article in The New York Times.^[14] Blume discussed the concept of "neurological diversity" with Australian sociologist Judy Singer.^[15] The term "neurodiversity" was first published in Singer's 1998 Honours thesis^[16][17] and in Blume's 1998 article in The Atlantic.^[18] Blume was an early self-advocate who predicted the role the Internet would play in fostering the international neurodiversity movement.^[19]

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.^[20] 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."^[21]

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 able-bodied professionals, and family members in established organizations, the Internet has provided a valuable space for self-advocates to organize and communicate.^[8] 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.^[22] 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.^[23]

Criticism

The potential for self-advocacy to lead to overconfidence and ignorance or dismissal of crucial or otherwise relevant facts has been debated. The discussion about democracy in medicine met claims the public cannot know about everything so experts are needed to produce knowledge on behalf of the public and make decisions for them; the public cannot make wrong decisions due to a lack of complete knowledge on the subject.^[24] This view renders the public unable to further academic research interests or shape academics' intellectual ideas^[25] and democracy as the public electing a party in charge that makes decisions for them.

Deborah Lupton said there are disadvantages for patients responding with greater levels of self-advocacy; she said in cases of intense suffering and the possibility of death, the doctor accepting an authoritative, controlling role may be important as a form of comfort. According to Lupton, trust in doctors, or in a professional advocate, and faith in their expert knowledge is needed to comfort extremely ill people.^[26][27]

In their research on thirty-two women wanting to know about how hormone replacement therapy (HRT) could relieve menopausal symptoms, Henwood, Wyatt, Hart and Smith challenged the claim the internet is able to promote self-advocacy.^[28] According to them, becoming self-advocate educated on the internet requires having the skills to access this information, and some knowledge to distinguish the usefulness of different types of information and decipher what information is valid. Patients' strategies for searching for information or advocacy on the internet were unsystematic.^[28]

References

Further reading