Amanda Melissa Baggs
August 15, 1980
|Died||April 11, 2020 (aged 39)|
Burlington, Vermont, U.S.
|Other names||Amelia Evelyn Voicy Baggs|
Amelia E. Voicy Baggs
|Alma mater||De Anza College|
|Known for||Autism advocacy|
|Genre||Autism advocacy, vlogs|
|Total views||4.97 million|
Updated: 12 July 2021
|Autism rights movement|
Amelia Evelyn Voicy Baggs (born 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 and disability, and became well known in the early stages of the autism rights movement. Baggs used a communication device to speak and referred to themselves as low-functioning. Revelations about Baggs's past created some uncertainty about their diagnosis. They died on April 11, 2020.
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. They also spoke at conferences about disabilities, and worked with Massachusetts Institute of Technology scientists that were researching autism.
In January 2007, Baggs posted a video on YouTube entitled "In My Language" describing the experience of living as a person with autism, which became the subject of several articles on CNN. Baggs also guest-blogged about the video on Anderson Cooper's blog and answered questions from the audience via email. About Baggs, Sanjay Gupta said:
[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. The singing at the beginning of Leckey's video "Prop4aShw" is from Baggs' "In My Language".
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’".
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", used to describe disabled people as incapable.
Baggs was born in Mountain View, California on August 15, 1980, and attended Harker School, De Anza College and Bard College at Simon’s Rock, a college for gifted high school-aged teenagers, which they entered in 1994 aged 14. Baggs moved from California to Vermont in order to be closer to a friend in 2005. Their name was legally changed to Amelia Evelyn Voicy Baggs in 2014.
Baggs described themself as genderless and nonbinary 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.
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." According to these classmates, Baggs functioned as a typically developing adolescent, and began to suffer psychological problems after long-term use of heavy doses of psychedelic drugs, resulting in a mental breakdown after which Baggs withdrew from Simon's Rock and spent time in a psychiatric hospital. After leaving Simon's Rock, Baggs wrote extensively on Deja News (now Google Groups) in the late 1990s, discussing their drug use and mental breakdown, stating that they had been diagnosed with schizophrenia, and theorizing that they may also have had dissociative identity disorder. Baggs later stated that they did not have DID and apologized in 1997 for having "deceived" themselves and others when their true diagnosis was for schizophrenia. In 2002, Baggs posted that they had been labeled with having factitious disorder imposed on self, also known as Munchausen syndrome, rather than autism by clinicians at Stanford University Medical Center, which Baggs contested the accuracy of. Baggs did not dispute those details online when questioned after their 2007 CNN appearance, but claimed a loss of all functional speech in their 20s. Additionally, other autism advocates have also questioned the validity of their diagnosis, given that Baggs did not meet many of the requirements of low functioning autism. An article in Slate stated that some of their past acquaintances had been threatened with legal action by attorneys employed by Baggs for challenging their story.
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. Baggs claimed to use FC, and that Fey, their cat, was their best facilitator as Fey moved their limbs around.
In addition to autism, Baggs also claimed to have been diagnosed with bipolar disorder, dissociative disorder, psychotic disorder, schizophrenia, and gastroparesis. They 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.
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.
- Baggs, Mel (2020). "Losing". Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Springer. pp. 77–86. ISBN 978-981-13-8437-0.
- Picard, Rosalind W.; Smith, Joel; Baggs, Amanda. "Toward a voice for everyone". MIT Media Lab.
- Baggs, Amanda (February 21, 2007). "Why we should listen to 'unusual' voices". CNN.
- Baggs, Amanda. "In My Language" (YouTube, 2007)
- "About silentmiaow". YouTube.
- 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.
- Wolman, David (February 25, 2008). "The Truth About Autism: Scientists Reconsider What They Think They Know". Wired. Retrieved February 29, 2016.
- "Autism Movement Seeks Acceptance, Not Cures". NPR. June 26, 2006. Retrieved December 23, 2013.
- Erin Anderssen. "'Autistics': We don't want a cure". The Globe and Mail. Retrieved December 23, 2013.
- "Kindergartners Vote Classmate With Disabilities 'Off the Island'". Digitaljournal.com. May 24, 2008. Retrieved December 23, 2013.
- Genzlinger, Neil (April 28, 2020). "Mel Baggs, Blogger on Autism and Disability, Dies at 39". The New York Times. Retrieved April 29, 2020.
- Smith, Harrison. "Mel Baggs, influential blogger on disability and autism, dies at 39". Washington Post. Retrieved April 30, 2020.
- Baggs, Mel (January 14, 2007). "In My Language". YouTube. Archived from the original on December 15, 2021. Retrieved February 23, 2007.
- Gajilan, A. Chris (February 22, 2007). "Living with autism in a world made for others". CNN. Retrieved February 25, 2007.
- Gupta, Sanjay (February 20, 2007). "Behind the veil of autism". CNN. Retrieved February 25, 2007.
- Abedin, Shahreen (February 21, 2007). "Video reveals world of autistic woman". CNN. Retrieved February 25, 2007.
- Baggs, Mel (February 21, 2007). "Why we should listen to 'unusual' voices". CNN. Retrieved February 25, 2007.
- Baggs, Amanda (February 22, 2007). "Amanda Baggs answers your questions". CNN. Retrieved February 25, 2007.
- "Jonathan Griffin, A Thing for Things, Frieze, Issue 160, January 2014". Archived from the original on June 14, 2015.
- "Mark Leckey". We Find Wilderness. Retrieved June 11, 2015.
- Padgett, Donald (April 29, 2020). "Mel Baggs, Noted Non-Binary and Autistic Blogger, Dies at 39". Advocate. Retrieved April 30, 2020.
- "Living With Autism In A World Made For Others". CNN.com. Retrieved December 17, 2014.
- "The Language of Autism". Well.blogs.nytimes.com. February 28, 2008. Retrieved September 29, 2013.
- Baggs, Mel (June 3, 2014). "Name change announcement". Tumblr. Retrieved August 23, 2021.
- Baggs, Mel. "SJ? Anti-SJ? Both? Neither?". Tumblr. Retrieved August 23, 2021.
- "apology". groups.google.com. Retrieved April 21, 2021.
- "Official Diagnosis". groups.google.com. Retrieved April 26, 2021.
- 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.
- Amanda Baggs Autism Controversy. "Amanda Baggs Autism Controversy". Retrieved April 21, 2021.
- Baggs, Amanda (June 26, 2006). "Autistic AAC Users". Ballastexistenz. Retrieved July 26, 2019.
- 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.
- Baggs, Mel (May 2, 2013). "Feeding tubes and weird ideas".
- 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.
- Picard, Rosalind W. "Toward a voice for everyone". MIT Media Lab. Retrieved May 1, 2020.
- Garden, Rebecca. "In My Language". medhum.med.nyu.edu. Retrieved May 1, 2020.