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.[22]

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.[23] This view renders the public unable to further academic research interests or shape academics' intellectual ideas[24] 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 and faith in their expert knowledge is needed to comfort extremely ill people.[25][26]

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.[27] 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 on the internet were unsystematic.[27]

References
  1. http://sabeusa.org%5B%5D
  2. http://self-advocacy.org%5B%5D
  3. "Purpose of the March of Dimes".
  4. Fleischer & Zames, Doris & Frieda (2001). The Disability Rights Movement: From Charity to Confrontation. Temple University Press. pp. 9.
  5. Honey, Anne (1999). "Empowerment versus power: Consumer participation in mental health services". Occupational Therapy International. 6 (4): 257–276. doi:10.1002/oti.101.
  6. Buchanan, Ian; Walmsley, Jan (September 2006). "Self-Advocacy in Historical Perspective". British Journal of Learning Disabilities. 34 (3): 133–138. doi:10.1111/j.1468-3156.2006.00410.x. ISSN 1354-4187.
  7. Solomon, Andrew (2008-05-25). "The autism rights movement". New York. Archived from the original on 27 May 2008. Retrieved 2008-05-27.
  8. Sinclair, Jim. (January 2005). "Autism Network International: The Development of a Community and its Culture". Jim Sinclair's personal website. Archived from the original on 2009-01-26. Retrieved 2007-11-07.
  9. Sinclair, Jim. History of ANI Archived January 26, 2009, at the Wayback Machine. Retrieved 12 November 2005.
  10. "FAQs – Association for Autistic Community". Association for Autistic Community. Retrieved 2019-08-03.
  11. "Concept". Autscape. Retrieved 2019-08-03.
  12. Rosqvist, Hanna Bertilsdotter; Brownlow, Charlotte; O’Dell, Lindsay (2013-04-01). "Mapping the social geographies of autism – online and off-line narratives of neuro-shared and separate spaces" (PDF). Disability & Society. 28 (3): 367–379. doi:10.1080/09687599.2012.714257. ISSN 0968-7599. S2CID 144239845.
  13. Silberman, Steve (2015-09-23). "Autism Is a Valuable Part of Humanity's Genetic Legacy". Slate Magazine. Retrieved 2019-08-03.
  14. Blume, Harvey (2019-04-03). "Autistics, freed from face-to-face encounters, are communicating in cyberspace". The New York Times. Archived from the original on 2019-04-03. Retrieved 2019-08-03.
  15. Craft, Samantha. "Meet Judy Singer, Neurodiversity Pioneer". My Spectrum Suite. Retrieved 2019-08-03.
  16. Singer, Judy (1998), Odd People In: The Birth of Community Amongst People on the Autistic Spectrum: A personal exploration of a New Social Movement based on Neurological Diversity, Sydney: Faculty of Humanities and Social Science University of Technology
  17. Singer, Judy (2017). Neurodiversity : the birth of an idea. Lexington, Kentucky. ISBN 9780648154709. OCLC 1039095077.
  18. Blume, Harvey (September 1998). "Neurodiversity". The Atlantic. Retrieved 2018-08-03.
  19. Blume, Harvey (1997-07-01). ""Autism & The Internet" or "It's The Wiring, Stupid"". Media In Transition. Massachusetts Institute of Technology. Retrieved 2007-11-08. A project called CyberSpace 2000 is devoted to getting as many people as possible in the autistic spectrum hooked up by the year 2000, reason being that "the Internet is an essential means for autistic people to improve their lives, because it is often the only way they can communicate effectively."
  20. Collier, Roger. "Autism". The Ottawa Citizen (2007-12-01). Retrieved on 2008-02-17.
  21. Harmon, Amy (2004-12-20). "How About Not 'Curing' Us, Some Autistics Are Pleading". The New York Times. Archived from the original on December 2, 2011. Retrieved 2007-11-07.
  22. Sinclair, Jim. (January 2005). "Autism Network International: The Development of a Community and its Culture". Jim Sinclair's personal website. Archived from the original on 2009-01-26. Retrieved 2007-11-07.
  23. Whitehead, Amy Solomon (2015). "The Unattainable Ideal: Walter Lippmann and the Limits of the Press and Public Opinion". LSU Master Theses'.
  24. Parsi, Kayhan P.; Geraghty, Karen E. (Winter 2004). "The Bioethicist as Public Intellectual". American Journal of Bioethics. 4 (1): W17–W23. doi:10.1162/152651604773067514. PMID 15035927. S2CID 21910954.
  25. Lupton, Deborah (August 1997). "Consumerism, Reflexivity and the Medical Encounter". Social Science & Medicine. 45 (3): 373–381. doi:10.1016/S0277-9536(96)00353-X. PMID 9232732.
  26. Lupton, Deborah (1997). "Foucault and the Medicalisation Critique". In Peterson, Alan; Bunton, Robin (eds.). Foucault: Health and Medicine. London: Routledge. pp. 94–110. ISBN 978-0-415-15177-1. OCLC 501485235.
  27. Henwood, Flis; Wyatt, Sally; Hart, Angie; Smith, Julie (September 2003). "'Ignorance is Bliss Sometimes': Constraints on the Emergence of the 'Informed Patient' in the Changing Landscapes of Health Information". Sociology of Health & Illness. 25 (6): 589–607. doi:10.1111/1467-9566.00360. PMID 12919447.

Further reading
  • Dybwad, Gunnar; Bersani, Hank, Jr., eds. (2000) [1996]. New voices: Self-advocacy by people with disabilities (reprint ed.). Cambridge, MA: Brookline Books. ISBN 978-1-57129-004-5. OCLC 426222826. This book includes many chapters written by self-advocates concerning the self-advocacy movement, and provides a historical perspective, as well as reflections on the current status and future course of the movement.
  • International League of Societies for Persons with Mental Handicap (1996). The Beliefs, Values, and Principles of Self-Advocacy. Cambridge, MA: Brookline Books. ISBN 978-1-57129-022-9. OCLC 39295683. This booklet talks about the beliefs, values, and principles of self-advocacy, and about the role of support persons. It also gives examples of good practice. It is produced by the ILSMH formed to help promote self-advocacy internationally.
  • Sands, Deanna J.; Wehmeyer, Michael L., eds. (1996). Self-determination across the life span: Independence and choice for people with disabilities. Baltimore: P.H. Brookes. ISBN 978-1-55766-238-5. OCLC 34192530. This book recognizes that self-determination is one of the building blocks of independence for people with disabilities and explores the theoretical, developmental, and practical aspects of decision making.
  • Self-Advocates Becoming Empowered (1994). Taking place: Standing up and speaking out about living in our communities. prepared by Michelle Hoffman. Memphis, TN: Self-Advocates Becoming Empowered. OCLC 37870231. Available from ARC Tulsa 1601 S. Main Street, Suite 300, Tulsa, OK 74119, attn: Michelle Hoffman
  • Williams, Paul; Shoultz, Bonnie (1982). We can speak for ourselves. Human horizons. London: Souvenir Press. ISBN 978-0-285-64938-5. OCLC 9185871. This book describes the beginnings of the self-advocacy movement in the United States and in England. Includes suggestions for developing self-advocacy groups.
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