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Anne McDonald

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The Anne McDonald Centre in Melbourne for disabled people with little or no speech.

Anne McDonald (11 January 1961 – 22 October 2010) was an Australian person with cerebral palsy who has been credited as an author and an activist for the rights of people with communication disability.

Early life

McDonald was born on 11 January 1961 in Seymour, Victoria, a small Australian town. As a result of a birth injury, she developed severe athetoid cerebral palsy. Because she could not walk, talk or feed herself, she was diagnosed as having severe intellectual disability. At the age of three, she was placed by her parents in St. Nicholas Hospital, Melbourne, a Health Commission (government) institution for children with severe disabilities, and she lived there without education or therapy for eleven years. During McDonald's time in the hospital, she was neglected and starved and at age 16 she weighed only 12 kilograms.[1][2] Despite her ill-treatment, McDonald was reported to have considered herself "a lucky one" in that she was able to be released, and to have estimated that 163 of her friends died in the institution while she was there.[2]

In 1977, when McDonald was 16, Rosemary Crossley reported that she was able to communicate with her by supporting her upper arm while she selected word blocks and magnetic letters. Crossley continued using similar strategies with McDonald and other individuals with disabilities, developing what has become known as facilitated communication training. Some studies have since asserted that facilitated communication is not actually effective, and that the resulting messages are essentially written by the facilitators themselves, often unconsciously.[3][4][5][6][7][8][9] Other studies assert that facilitated communication training has been successful in enabling some people with little or no speech to communicate. [10]


Through Crossley, McDonald appeared to seek discharge from St. Nicholas. Her parents and the hospital authorities denied her request on the grounds that the reality of her communication had not been established. In 1979, when McDonald turned eighteen, she commenced a habeas corpus action in the Supreme Court of Victoria against the Health Commission in order to win the right to leave the institution.[11][12] The court transcript shows that the hospital authorities argued that McDonald's small size - she then weighed 15 kg and was 105 cm tall - was evidence of profound retardation. The court accepted that McDonald's communication was her own and allowed her to leave the hospital and live with Crossley.

Career

After leaving the institution, McDonald got her Higher School Certificate (University entrance) qualification at night school and went on to take a humanities degree at Deakin University, completed in 1993. An editorial in the Melbourne Herald-Sun said at the time: "If walking on the moon was a giant leap for mankind as well as a small step for one man, then Anne McDonald's graduation from university yesterday was a major lessor for society as much as it was the fulfilment of a personal dream".[13] By this time McDonald was 150 cm tall, having grown 45 cm since leaving the institution at the age of 18. She was credited as an author of a number of articles and papers on disability, presented at international conferences, and as being active in the disability rights movement, with special emphasis on the right to communicate.[14][15][16]

McDonald was credited as a co-author, with Crossley, of the book Annie's Coming Out (1980), which tells their story. The film Annie's Coming Out, based on the book, won several Australian Film Institute awards (including Best Picture) and was released in the US under the title Test of Love. It won the inaugural Allen Lane Award for the best book of the year dealing with disability. Some questioned whether McDonald had the capacity write a book, and she had to demonstrate her abilities in the Supreme Court to win the right to manage her own financial affairs and enter into a contract with Penguin Books.[17][18]

On the International Day of Persons with Disabilities, 3 December 2008, McDonald received the Personal Achievement Award in the Australian National Disability Awards at Parliament House. Her presentation on that occasion said:

The worst thing about being an inspiration is that you have to be perfect. I am a normal person with only normal courage. Some people who should know better have tried to give me a halo. Anybody could have done what I have done if they too had been taken out of hell as I was. If you let other people without speech be helped as I was helped they will say more than I can say. They will tell you that the humanity we share is not dependent on speech. They will tell you that the power of literacy lies within us all. They will tell you that I am not an exception, only a bad example.

Death and legacy

McDonald died of a heart attack on 22 October 2010.[19] She received a posthumous award from the Australian Group on Severe Communication Impairment (AGOSCI). The citation read:

Anne's dedicated advocacy and activism for the human rights of people with disabilities and especially those using alternative and augmentative communication (AAC) was as inspirational as her own achievement. As author and presenter she worked tirelessly to raise the profile of people with communication disabilities. Her outstanding achievements are acknowledged and sincerely appreciated by AGOSCI.[20]

Controversy

The story of McDonald's use of facilitated communication has been questioned many times, with sceptics pointing to input from the assistant.[21][22] Psychologists and policy makers have argued facilitated communication is, at best, ineffective wishful thinking, and at worst, actively harmful.[23][24][25]

McDonald and her story have reappeared in the news following the sexual assault case against facilitated communication aide Anna Stubblefield.[26]

  • Annie's Coming Out (Penguin Books, 1980) ISBN 0-14-005688-2

References

  1. ^ Rosemary Crossley, "Speechless: Facilitating Communication for People Without Voices", Dutton Adult (1997), ISBN 0-525-94156-8
  2. ^ a b Carman, Gerry "Persistence and passion speak loudest" (obituary). The Sydney Morning Herald, 1 November 2010
  3. ^ Green, Gina (1994). "Facilitated communication: Mental miracle or sleight of hand?". Skeptic. 2: 68–76. Archived from the original on 17 December 2002. {{cite journal}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  4. ^ Lilienfeld; et al. "Why debunked autism treatment fads persist". Science Daily. Emory University. Retrieved 10 November 2015.
  5. ^ Editorial Board (12 April 2016). "Syracuse University's reinforcement of facilitated communication inexcusable, concerning". The Daily Orange. Syracuse University. Retrieved 13 April 2016.
  6. ^ Todd, James T. (13 July 2012). "The moral obligation to be empirical: Comments on Boynton's 'Facilitated Communication - what harm it can do: Confessions of a former facilitator'". Evidence-Based Communication Assessment and Intervention. 6 (1): 36–57. doi:10.1080/17489539.2012.704738.
  7. ^ Hall, Genae A. (1993). "Facilitator Control as Automatic Behavior: A Verbal Behavior Analysis". The Analysis of Verbal Behavior. 11: 89–97. doi:10.1007/bf03392890. PMC 2748555. PMID 22477083.
  8. ^ Jacobson, John W.; Mulick, James A.; Schwartz, Allen A. (September 1995). "A History of Facilitated Communication: Science, Pseudoscience, and Antiscience: Science Working Group on Facilitated Communication". American Psychologist. 50 (9): 750–765. doi:10.1037/0003-066x.50.9.750.
  9. ^ Facilitated Communication: Sifting the Psychological Wheat from the Chaff. American Psychological Association. June 13, 2016.
  10. ^ Bernardi, L. & Tuzzi, A. (2011). Analyzing written communication in AAC contexts: A statistical perspective. Augmentative and Alternative Communication. 27(3), 183- 194. Biklen, D., Saha, N., & Kliewer, C. (1995). How teachers confirm the authorship of facilitated communication: A portfolio approach. Journal of the Association for People with Severe Handicaps, 20, 45–56. [M1] Broderick, A. A., & Kasa-Hendrickson, C. (2001). “Say just one word at first:” The mergence of reliable speech in a student labeled with autism. Journal of the Association for People with Severe Handicaps, 26(1), 13–24. Calculator, S. N., & Hatch, E. R. (1995). Validation of facilitated communication: A case study and beyond. American Journal of Speech-Language Pathology, 4, 49–58. [M1/P/W] Calculator, S. N., & Singer, K. M. (1992). Preliminary validation of facilitated communication. Topics in Language Disorders, 13(1), ix-xvi. [P] Cardinal, D. N., Hanson, D., & Wakeham, J. (1996). Investigation of authorship in facilitated communication. Mental Retardation, 34, 231–242. [M1/P] Emerson, A., Grayson, A., & Griffiths, A. (2001). Can't or won't? evidence relating to authorship in facilitated communication. International Journal of Language and Communication Disorders, 36(Suppl), 98-103. [M10] Grayson, A., Emerson, A., Howard-Jones, P., & O’Neil, L. (2012). Hidden communicative competence: case study evidence using eye-tracking and video analysis. Autism, 16(1), 75-86. Janzen-Wilde, M. L., Duchan, J. F., & Higginbotham, D. J. (1995). Successful use of facilitated communication with an oral child. Journal of Speech and Hearing Research, 38, 658–676. [M1] Myles, B. S, Simpson, R. L., & Smith, S. M. (1996a). Impact of facilitated communication combined with direct instruction on academic performance of individuals with autism. Focus on Autism and Other Developmental Disabilities, 11, 37–44. [M1/P/W] Myles, B., Simpson, R. L., & Smith, S. M. (1996b). Collateral behavior and social effects of using facilitated communications with individuals with autism. Focus on Autism and Other Developmental Disabilities, 11, 163–169, 190. [M1] Olney, M. (1995). Reading between the lines: A case study on facilitated communication. Journal of the Association for People with Severe Handicaps, 20, 57–65. [M1] Olney, M. F. (2001). Evidence of literacy in individuals labeled with mental retardation. Disability Studies Quarterly, 21(2). Sheehan, C. M., & Matuozzi, R. T. (1996). Investigation of the validity of facilitated communication through disclosure of unknown information. Mental Retardation, 34, 94–107. [M1/P] Tuzzi, A. (2009). Grammar and lexicon in individuals with autism: a quantitative analyses of a large Italian corpus. Intellectual and Developmental Disabilities, 47, 373-385. Tuzzi, A., Cemin, M., Castagna, M. (2004). "Moved deeply I am" Autistic language in texts produced with FC. Journées internationales dʼAnalyse statistique des Données Textuelles, 7, 1097-1105. Weiss, M. J., Wagner, S. H., & Bauman, M. L. (1996). A validated case study of facilitated communication. Mental Retardation, 34, 220–230. [M1/P]
  11. ^ David J. Clark, Gerard McCoy, "Habeas corpus: Australia, New Zealand, the South Pacific", pp. 120, Federation Press, Sydney (2000), ISBN 1-86287-302-X
  12. ^ Susan Hayes and Robert Hayes, "Simply Criminal", pp. 51, The Law Book Company Limited, Sydney (1984), ISBN 0-455-20279-6
  13. ^ Editorial, Sunday Herald Sun, May 29, 1994
  14. ^ Alternate home website Archived 15 June 2009 at the Wayback Machine
  15. ^ Intelligence goes beyond motor skill
  16. ^ Facebook page [www.facebook.com/pages/Anne-McDonald/133281970040595]
  17. ^ Rosemary Crossley, "Speechless: Facilitating Communication for People Without Voices", Dutton Adult (1997), ISBN 0-525-94156-8
  18. ^ Dwyer, Joan (February 1996). "Access to Justice for People with Sever Communication Impairment". The Australian Journal of Administrative Law. 3 (2): 73–119. Archived from the original on 24 November 2010 – via DEAL. {{cite journal}}: Unknown parameter |dead-url= ignored (|url-status= suggested) (help)
  19. ^ "annie-has-gone-but-her-legacy-and-fighting-spirit-live-on". The Age
  20. ^ Sue Owen, Chairperson, Agosci, 14 May 2011
  21. ^ "More Doubts over Disability 'Miracle' | Disability Advocacy Resource Unit (DARU)". www.daru.org.au. 24 May 2012. Retrieved 16 January 2016.
  22. ^ Rule, Andrew (14 May 2012). "Rosemary's Baby" (PDF). Archived from the original (PDF) on 5 April 2016. Retrieved 16 January 2016. {{cite news}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  23. ^ Auerbach, David (12 November 2015). "Facilitated Communication Is a Cult That Won't Die". Slate. ISSN 1091-2339. Retrieved 16 January 2016.
  24. ^ "FRONTLINE: previous reports: transcripts: prisoners of silence | PBS". www.pbs.org. Retrieved 16 January 2016.
  25. ^ Jordan, Rita (1998). Research Report 77: Educational Interventions for Children With Autism: A Literature Review of Recent And Current Research. Department for Education and Employment.
  26. ^ Engber, Daniel (20 October 2015). "The Strange Case of Anna Stubblefield". The New York Times. ISSN 0362-4331. Retrieved 16 January 2016.

Add to fn 3: The Queen and the Health Commission of Victoria, George Lipton and Dennis McGinn, ex parte Anne McDonald, Unreported Victoria Supreme Court [1979].

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