Amanda Melissa "Mel" Baggs was a nonverbal autistic writer who wrote blogs about living with multiple disabilities, often including personal thoughts in those blogs relating to her conditions and overall life.

Background

Baggs was born in Campbell, California in 1980. She attended the Center for Talented Youth in Los Angeles at the Loyola Marymount University for their summer program as a child. She also attended Simon's Rock College in Massachusetts, where subsequently fellow students claimed that she "spoke, attended classes, dated, and otherwise acted in a completely typical fashion."[1]. While Baggs didn't dispute these events, they were being erroneously promoted as proof that she was not Autistic.

Between 1996 and 1998 it was reported that Baggs was claiming that she was suffering from schizophrenia and not Autism. This diagnosis however was made by established quack Harvey Biala.[2]

Baggs passed away on 11 April 2020.[3] Prior to her death, Baggs resided in Vermont and had done so since 2005.

Disability Status

Baggs had been labeled low-functioning[4] due to many severe disabilities. She was very rarely able to speak and used typing and picture symbols to communicate. She used a feeding tube and supplemental oxygen to avoid lung infections and used mobility equipment including splints, braces, a cane, and manual or power wheelchairs (depending on the circumstances). She had also been bedridden due to adrenal insufficiency.[5]

Baggs had previously been in a critical condition as a result of severe illnesses,[6][7] and in one particular incident in 2013 a hospital engaged in life threatening discrimination.[8]

Amanda challenged the notion that some people are too low-functioning to have lives worth living, and was very open about the disabilities and challenges faced. The blog named "Ballastexistenz" is a reference to "ballast existence" or "ballast life," older terms applied to disabled people that suggested they were burdens upon everyone else and did not deserve to live.[5]

Writing and Art

Human Rights

"We find ways of making communities. Not based on shared individual traits, so much as on a shared desire to understand and protect one another."[9]

Amanda wrote regularly about life's thoughts and experiences. Many of them centered around disability, including autism. Some were highly personal while others involved community issues such as the Judge Rotenberg Center.[10] Some are a mixture, such as a piece on disability gaslighting.[11]




In particular the essay "If I am killed" struck a chord with many autistic people. Amanda asked that if death were to occur, that no one blame lack of services or desperation[12] (as has been said after many caregiver murders/attempted murders, particularly by Autism Speaks).[13][14][15]

Sometimes her work was broader or unclear in focus, such as the essay "Your politics have a problem when they contradict the real-life experiences of the people they're supposed to be about." The essay could easily be read to be about autistic people's reaction to Autism Speaks and its cohorts, but there is nothing specific.[9]

Amanda also wrote about issues such as the mistreatment of obese people in health care.[16]

In My Language (2007)

"This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not."[17]

Amelia posted In My Language on YouTube in January 2007. It attracted the attention of CNN[18][19][20] and led to a feature on Anderson Cooper 360.[21][22]




Poetry

Amanda's poetic imagery evokes a sense of contemplation and oneness with nature. They involve a feeling dubbed marona, or the feeling "like reality is denser, thicker, more saturated with realness, more sacred, more real, more itself." Video artist Mark Leckey has stated he is in awe of her connection with inanimate objects.[23]

Artwork

Amanda's work includes The Scarf, a minimalist comic which is "part autobiography, part metaphor" based on experiences with delirium during hospitalization.[24]

References

  1. http://www.slate.com/articles/health_and_science/medical_examiner/2013/01/autism_neurodiversity_does_facilitated_communication_work_and_who_speaks.html
  2. http://amandabaggscontroversy.blogspot.com/
  3. Mel Baggs Obituary, Cause of Death Unknown
  4. NPR: Autism Movement Seeks Accceptance, Not Cures
  5. 5.0 5.1 Ballastexistenz: About
  6. Ballastexistenz: Love, Fear, Death, and Disability
  7. Ballastexistenz: I am not your fairy tale miracle cure story.
  8. Not Dead Yet: Autistic Writer/Blogger/Activist Amanda Baggs Facing Life-Threatening Discrimination in Vermont Hospital
  9. 9.0 9.1 Ballastexistenz: Your politics have a problem when they contradict the real-life experiences of the people they're supposed to be about.
  10. Ballastexistenz: This is how I feel when I read a lot of posts about the Judge Rotenberg Center.
  11. Ballastexistenz: After this, I am never again putting up with bullies telling me that my medical conditions are imaginary.
  12. Ballastexistenz: If I am killed
  13. Autism Women's Network: Is Autism Speaks a Hate Group?
  14. Boycott Autism Speaks: #IAmNOTKelliStapleton #WalkInIssysShoes What Are Your Priorities?
  15. Squidalicious: Please Stop Being "Understanding" When Autistic Kids Are Murdered
  16. BallastExistenz: Fat people and feeding tubes
  17. In My Language
  18. CNN: Living with autism in a world made for others
  19. CNN: Behind the Veil of Autism
  20. CNN: Video Reveals World of Autistic Woman
  21. Anderson Cooper: Why We Should Listen to Unusual Voices
  22. Anderson Cooper: Amanda Baggs answers your questions
  23. Frieze: A Thing for Things
  24. The Scarf — A Comic About Delirium
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