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Mel Baggs (born Amanda Melissa Baggs; August 15, 1980 – April 11, 2020) was an American non-binary writer and disability rights advocate with a focus on developmental disability self-advocacy.[2][3][4] They are most well-known for their blog posts and YouTube videos about autism,[5] although they wrote about a variety of disability experiences and disliked being thought of as an "autism blog[ger]". Baggs described themself as "cognitively disabled, physically disabled, chronically ill, developmentally disabled, and psychiatrically disabled".[3] As an adult they did not speak and used a communication device.[2][3][6]

Early life

Baggs was born in Mountain View, California on August 15, 1980, to Ronald and Anna (née Lynch) Baggs.[7] In 1994, they attended Harker School, De Anza College and Bard College at Simon's Rock, a college for gifted high school-aged teenagers, at age 14.[8] Baggs moved from California to Vermont to be closer to a friend in 2005.[9][10][8]

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.[8] They also spoke at conferences about disabilities, and worked with Massachusetts Institute of Technology scientists who were researching autism.[7]

In January 2007, Baggs posted a video on YouTube entitled "In My Language"[11] on the topic of autism which became the subject of several articles on CNN.[12][13][14] Baggs also guest-blogged about the video on Anderson Cooper's blog[15] and answered questions from the audience via email.[16] About Baggs, Sanjay Gupta said:[13]

[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 stated he was, in a sense, envious of Baggs' stated empathic relationship to inanimate objects.[17] The singing at the beginning of Leckey's video "Prop4aShw" is from Baggs' "In My Language".[18]

Baggs 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'".[8]

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, "Ballastexistenzen [de]", used to describe disabled people as incapable.[19][7]

Baggs wrote about numerous other syndromes and disabilities, including obsessive–compulsive disorder, Tourette syndrome, post-traumatic stress disorder, craniofacial abnormality, synesthesia, bronchiectasis, hypermobility, Irlen syndrome, and asthma.[citation needed]

Personal life

Baggs described themself as genderless and nonbinary[19] in their writings. They also identified as a lesbian and used any pronouns except it, though they preferred the neopronouns sie/hir and ze/zer.[20]

Baggs spoke about having other disabling conditions in addition to autism. Baggs wrote extensively on Deja News in the late 1990s, discussing their drug use and mental breakdown[citation needed], stating that they had been diagnosed with schizophrenia, and theorizing that they may also have had dissociative identity disorder (DID). However, in 1997 Baggs said they had been wrong about having DID, explaining that the "voices" that they had thought were DID alters were instead caused by "schizophrenia/schizoaffective/whatever".[21] In 2013, Baggs said that they had been diagnosed with gastroparesis and were now using a feeding tube.[22]

Baggs claimed a loss of all functional speech in their 20s. Other autism advocates have questioned the validity of their diagnosis, citing that Baggs did not meet many of the requirements of low functioning autism.[23][24][8][25]

Baggs claimed that augmentative communication is somewhat common among autistic individuals, though they also supported the use of the controversial facilitated communication and other widely scientifically discredited alternative therapies.[26] Baggs claimed to use FC, and that Fey, their cat, was their best facilitator as Fey moved their limbs around.[27]

Death

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.[8][7]

Selected publications

  • Baggs, Mel (2020). "Losing". Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Springer. pp. 77–86. ISBN 978-981-13-8437-0.[28]
  • Picard, Rosalind W.; Smith, Joel; Baggs, Amanda. "Toward a voice for everyone". MIT Media Lab.[29]
  • Baggs, Amanda (February 21, 2007). "Why we should listen to 'unusual' voices". CNN.
  • Baggs, Amanda. "In My Language" (YouTube, 2007)[30]

References

  1. ^ a b "About silentmiaow". YouTube.
  2. ^ a b "Autism Movement Seeks Acceptance, Not Cures". NPR. June 26, 2006. Retrieved December 23, 2013.
  3. ^ a b c Baggs, Mel. "About". Ballastexistenz. Retrieved March 15, 2025.
  4. ^ McClellan, C.S. (May 24, 2008). "Kindergartners Vote Classmate With Disabilities 'Off the Island'". Digitaljournal.com. Archived from the original on April 15, 2021. Retrieved March 15, 2025.
  5. ^ Wolman, David (February 25, 2008). "The Truth About Autism: Scientists Reconsider What They Think They Know". Wired. Retrieved February 29, 2016.
  6. ^ Erin Anderssen. "'Autistics': We don't want a cure". The Globe and Mail. Archived from the original on December 27, 2014. Retrieved December 23, 2013.
  7. ^ a b c d Smith, Harrison. "Mel Baggs, influential blogger on disability and autism, dies at 39". Washington Post. Retrieved April 30, 2020.
  8. ^ a b c d e f Genzlinger, Neil (April 28, 2020). "Mel Baggs, Blogger on Autism and Disability, Dies at 39". The New York Times. Retrieved April 29, 2020.
  9. ^ "Living With Autism In A World Made For Others". CNN.com. Retrieved December 17, 2014.
  10. ^ "The Language of Autism". Well.blogs.nytimes.com. February 28, 2008. Retrieved September 29, 2013.
  11. ^ Baggs, Mel (January 14, 2007). "In My Language". YouTube. Archived from the original on December 15, 2021. Retrieved February 23, 2007.
  12. ^ Gajilan, A. Chris (February 22, 2007). "Living with autism in a world made for others". CNN. Retrieved February 25, 2007.
  13. ^ a b Gupta, Sanjay (February 20, 2007). "Behind the veil of autism". CNN. Retrieved February 25, 2007.
  14. ^ Abedin, Shahreen (February 21, 2007). "Video reveals world of autistic woman". CNN. Retrieved February 25, 2007.
  15. ^ Baggs, Mel (February 21, 2007). "Why we should listen to 'unusual' voices". CNN. Retrieved February 25, 2007.
  16. ^ Baggs, Amanda (February 22, 2007). "Amanda Baggs answers your questions". CNN. Retrieved February 25, 2007.
  17. ^ "Jonathan Griffin, A Thing for Things, Frieze, Issue 160, January 2014". Archived from the original on June 14, 2015.
  18. ^ "Mark Leckey". We Find Wilderness. Retrieved June 11, 2015.
  19. ^ a b Padgett, Donald (April 29, 2020). "Mel Baggs, Noted Non-Binary and Autistic Blogger, Dies at 39". Advocate. Retrieved April 30, 2020.
  20. ^ Baggs, Mel. "SJ? Anti-SJ? Both? Neither?". Tumblr. Retrieved August 23, 2021.
  21. ^ "apology". groups.google.com. Retrieved April 21, 2021.
  22. ^ Baggs, Mel (May 2, 2013). "Feeding tubes and weird ideas".
  23. ^ 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.
  24. ^ Amanda Baggs Autism Controversy. "Amanda Baggs Autism Controversy". Retrieved April 21, 2021.
  25. ^ "Putting autism on trial: An interview with Amanda Baggs". July 3, 2007.
  26. ^ Baggs, Amanda (June 26, 2006). "Autistic AAC Users". Ballastexistenz. Retrieved July 26, 2019.
  27. ^ 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.
  28. ^ Baggs, Mel (2020). "Losing". Autistic Community and the Neurodiversity Movement. Springer. pp. 77–86. doi:10.1007/978-981-13-8437-0_6. ISBN 978-981-13-8436-3.
  29. ^ Picard, Rosalind W. "Toward a voice for everyone". MIT Media Lab. Retrieved May 1, 2020.
  30. ^ Garden, Rebecca. "In My Language". medhum.med.nyu.edu. Retrieved May 1, 2020.

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