Mel Baggs

Amanda Melissa Baggs (August 15, 1980 – April 11, 2020), also known as Amelia E. Voicy Baggs, was an American autistic and non-binary blogger who predominantly wrote on the subject of autism. Baggs used a communication device to speak and had been referred to as low-functioning.[1][2][3][4] They died on April 11, 2020.

Mel Baggs
Baggs in 2008
Born
Amanda Melissa Baggs

(1980-08-15)August 15, 1980
Mountain View, California, U.S.
DiedApril 11, 2020(2020-04-11) (aged 39)
Burlington, Vermont, U.S.
Other namesAmelia E. Voicy Baggs
Alma materDe Anza College
Simon's Rock
Known forAutism advocacy
YouTube information
Channel
Years active2006–2020
GenreAutism advocacy, vlogs
Subscribers8.26 thousand
Total views4.91 million
Updated: 8 February, 2021
Autism rights movement
Philosophy
Organizations
Events
Issues
People
Films
Criticism

Work

Baggs created a website titled “Getting the Truth Out,” a response to a campaign by the Autism Society of America. They claimed that the ASA's campaign made autistic people objects of pity.[5] They also spoke at conferences about disabilities, and worked with Massachusetts Institute of Technology scientists that were researching autism.[6]

In January 2007, Baggs posted a video on YouTube entitled In My Language[7] describing the experience of living as a person with autism, which became the subject of several articles on CNN.[8][9][10] Baggs also guest-blogged about the video on Anderson Cooper's blog[11] and answered questions from the audience via email.[12] About Baggs, Sanjay Gupta said:[9]

[They] told me that because [they don't] communicate with conventional spoken word, [they are] written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with [them] in [their] apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Video artist Mark Leckey admitted that he is, in a sense, envious of Baggs' empathic relationship to inanimate objects.[13] The singing at the beginning of Leckey's video Prop4aShw is from Baggs' In My Language.[14]

Baggs described themself as genderless and nonbinary[15] in their writings. They also advocated for a consistent definition of autism awareness, claiming that awareness was misrepresented by both parents and some advocates. They wrote articles in two online blogs: ballastexistenz and Cussin’ and Discussin’.[5]

Baggs said they named their first blog ballastexistenz to show that people like them were capable of living a worthy life, since it was a historical term used to describe disabled people as incapable.[15][6]

Personal life

Baggs was born in Mountain View, California on August 15, 1980 and attended De Anza College and Bard College at Simon’s Rock.[5] Baggs moved from California to Vermont in order to be closer to a friend in 2005.[16][17][5]

Several classmates of Baggs have found the presence of their alleged impairments to be unusual, subsequently claiming that Baggs "spoke, attended classes, dated, and otherwise acted in a completely typical fashion." Baggs did not dispute those details online, but claimed a loss of all functional speech in their 20s. Additionally, other autism advocates have also questioned the validity of their diagnosis.[18][19][5]

Baggs claimed that augmentative communication is somewhat common among autistic individuals, though they also supported the use of facilitated communication and other scientifically discredited alternative therapies.[20] Baggs claimed to use FC, and that Fey, their cat, was their best facilitator as Fey moved their limbs around.[21]

In addition to autism, Baggs had also claimed to have been diagnosed with and wrote about numerous other syndromes and disabilities, including bipolar disorder, dissociative disorder, psychotic disorder, and gastroparesis.[22]

Baggs died on April 11, 2020 at the age of 39 in Burlington, Vermont; their mother said that the cause of their death was believed to be respiratory failure.[5]

Selected works
  • Baggs, Mel (2020). "Losing". Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Springer. pp. 77–86. ISBN 978-981-13-8437-0.[23]
  • Picard, Rosalind W.; Smith, Joel; Baggs, Amanda. "Toward a voice for everyone". MIT Media Lab.[24]
  • Baggs, Amanda (February 21, 2007). "Why we should listen to 'unusual' voices". CNN.
  • Baggs, Amanda. "In My Language" (YouTube, 2007)[25]

References
  1. Wolman, David (February 25, 2008). "The Truth About Autism: Scientists Reconsider What They Think They Know". Wired. Retrieved February 29, 2016.
  2. "Autism Movement Seeks Acceptance, Not Cures". NPR. June 26, 2006. Retrieved December 23, 2013.
  3. Erin Anderssen. "'Autistics': We don't want a cure". The Globe and Mail. Retrieved December 23, 2013.
  4. "Kindergartners Vote Classmate With Disabilities 'Off the Island'". Digitaljournal.com. May 24, 2008. Retrieved December 23, 2013.
  5. Genzlinger, Neil (April 28, 2020). "Mel Baggs, Blogger on Autism and Disability, Dies at 39". The New York Times. Retrieved April 29, 2020.
  6. Smith, Harrison. "Mel Baggs, influential blogger on disability and autism, dies at 39". Washington Post. Retrieved April 30, 2020.
  7. Baggs, Mel (January 14, 2007). "In My Language". YouTube. Retrieved February 23, 2007.
  8. Gajilan, A. Chris (February 22, 2007). "Living with autism in a world made for others". CNN. Retrieved February 25, 2007.
  9. Gupta, Sanjay (February 20, 2007). "Behind the veil of autism". CNN. Retrieved February 25, 2007.
  10. Abedin, Shahreen (February 21, 2007). "Video reveals world of autistic woman". CNN. Retrieved February 25, 2007.
  11. Baggs, Mel (February 21, 2007). "Why we should listen to 'unusual' voices". CNN. Retrieved February 25, 2007.
  12. Baggs, Amanda (February 22, 2007). "Amanda Baggs answers your questions". CNN. Retrieved February 25, 2007.
  13. "Jonathan Griffin, A Thing for Things, Frieze, Issue 160, January 2014". Archived from the original on June 14, 2015.
  14. "Mark Leckey". We Find Wilderness. Retrieved June 11, 2015.
  15. Padgett, Donald (April 29, 2020). "Mel Baggs, Noted Non-Binary and Autistic Blogger, Dies at 39". Advocate. Retrieved April 30, 2020.
  16. "Living With Autism In A World Made For Others". CNN.com. Retrieved December 17, 2014.
  17. "The Language of Autism". Well.blogs.nytimes.com. February 28, 2008. Retrieved September 29, 2013.
  18. Amy S.F. Lutz (January 16, 2013). "Autism neurodiversity: Does facilitated communication work, and who speaks for the severely autistic?". Slate.com. Retrieved September 29, 2013.
  19. Abreu, Belinha S. De; Mihailidis, Paul (2013). Media Literacy Education in Action: Theoretical and Pedagogical Perspectives. Routledge. pp. 41–42. ISBN 978-1-135-12372-7. Retrieved April 12, 2020.
  20. Baggs, Amanda (June 26, 2006). "Autistic AAC Users". Ballastexistenz. Retrieved July 26, 2019.
  21. Baggs, Amanda. "Real Supports: What works, what doesn't" (PDF). Autism National Committee. Archived from the original (PDF) on December 6, 2019. Retrieved December 6, 2019.
  22. Baggs, Mel. "Feeding tubes and weird ideas".
  23. Baggs, Mel (2020). Losing. Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Springer. pp. 77–86. doi:10.1007/978-981-13-8437-0_6. ISBN 978-981-13-8436-3. Retrieved May 10, 2020.
  24. Picard, Rosalind W. "Toward a voice for everyone". MIT Media Lab. Retrieved May 1, 2020.
  25. Garden, Rebecca. "In My Language". medhum.med.nyu.edu. Retrieved May 1, 2020.
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