Mel Baggs (born Amanda Melissa Baggs; August 15, 1980 – April 11, 2020) was an American

non-binary Non-binary or genderqueer Gender identity, gender identities are those that are outside the male/female gender binary. Non-binary identities often fall under the transgender umbrella since non-binary people typically identify with a gende ...

writer and

disability rights The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all disabled people. It is made up of organizations of disability activists, also known as disability advocates, around ...

advocate with a focus on

developmental disability Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, espe ...

self-advocacy Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil right ...

. They are most well-known for their

blog A blog (a Clipping (morphology), truncation of "weblog") is an informational website consisting of discrete, often informal diary-style text entries also known as posts. Posts are typically displayed in Reverse chronology, reverse chronologic ...

posts and

YouTube YouTube is an American social media and online video sharing platform owned by Google. YouTube was founded on February 14, 2005, by Steve Chen, Chad Hurley, and Jawed Karim who were three former employees of PayPal. Headquartered in ...

videos about

autism Autism, also known as autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by differences or difficulties in social communication and interaction, a preference for predictability and routine, sensory processing d ...

, although they wrote about a variety of disability experiences and disliked being thought of as an "autism blog er. Baggs described themselves as "cognitively disabled, physically disabled, chronically ill, developmentally disabled, and psychiatrically disabled". As an adult, they did not speak and used a communication device.

Early life

Baggs was born in

Mountain View, California Mountain View is a city in Santa Clara County, California, United States, part of the San Francisco Bay Area. Named for its views of the Santa Cruz Mountains, the population was 82,376 at the 2020 United States census, 2020 census. Mountain V ...

, on August 15, 1980, to Ronald and Anna (née Lynch) Baggs. In 1994, they attended

Harker School The Harker School is a private, co-educational school located in San Jose, California. Founded in 1893 as Manzanita Hall, Harker has three campuses: Bucknall, Union, and Saratoga, named after the streets on which they lie. Overview The Buc ...

De Anza College De Anza College is a public community college in Cupertino, California, United States. It is part of the Foothill-De Anza Community College District, which also administers Foothill College in nearby Los Altos Hills, California. The college i ...

and

Bard College at Simon's Rock Bard College at Simon's Rock (more commonly known as Simon's Rock) is a Private college, private Liberal arts colleges in the United States, liberal arts college in Great Barrington, Massachusetts. It is part of Bard College in Annandale-on-Hudso ...

, a college for gifted high school-aged teenagers, at age 14. Baggs moved from

California California () is a U.S. state, state in the Western United States that lies on the West Coast of the United States, Pacific Coast. It borders Oregon to the north, Nevada and Arizona to the east, and shares Mexico–United States border, an ...

Vermont Vermont () is a U.S. state, state in the New England region of the Northeastern United States. It borders Massachusetts to the south, New Hampshire to the east, New York (state), New York to the west, and the Provinces and territories of Ca ...

to be closer to a friend in 2005.

Work

Baggs created a website titled "Getting the Truth Out", a response to a campaign by the

Autism Society of America The Autism Society of America (ASA) was founded in 1965 by Bernard Rimland together with Ruth C. Sullivan and a small group of other parents of autistic children. Its original name was the National Society for Autistic Children; the name was chang ...

. 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 The Massachusetts Institute of Technology (MIT) is a Private university, private research university in Cambridge, Massachusetts, United States. Established in 1861, MIT has played a significant role in the development of many areas of moder ...

scientists who were researching autism. In January 2007, Baggs posted a video on

entitled "In My Language" on the topic of autism which became the subject of several articles on

CNN Cable News Network (CNN) is a multinational news organization operating, most notably, a website and a TV channel headquartered in Atlanta. Founded in 1980 by American media proprietor Ted Turner and Reese Schonfeld as a 24-hour cable ne ...

. Baggs also guest-blogged about the video on

Anderson Cooper Anderson Hays Cooper (born June 3, 1967) is an American broadcast journalist and political commentator who anchors the CNN news broadcast show ''Anderson Cooper 360°''. In addition to his duties at CNN, Cooper serves as a correspondent for ''6 ...

's blog and answered questions from the audience via email. About Baggs,

Sanjay Gupta Sanjay Gupta (born October 23, 1969) is an American neurosurgeon, medical reporter, and writer. He serves as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, Georgia, associate professor of neurosurgery at ...

said: Video artist

Mark Leckey Mark Leckey (born 1964) is a British contemporary artist. His found object art and video pieces, which incorporate themes of nostalgia and anxiety, and draw on elements of pop culture, span several works and exhibitions. In particular, he is kn ...

stated he was, in a sense, envious of Baggs' stated 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'". They were most likely the first person to coin the term " aspie supremacy" in an article on their blog, "Ballastexistenz", called "Aspie supremacy can kill". 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. Baggs wrote about numerous other syndromes and disabilities, including

obsessive–compulsive disorder Obsessive–compulsive disorder (OCD) is a mental disorder in which an individual has intrusive thoughts (an ''obsession'') and feels the need to perform certain routines (''Compulsive behavior, compulsions'') repeatedly to relieve the dis ...

Tourette syndrome Tourette syndrome (TS), or simply Tourette's, is a common neurodevelopmental disorder that begins in childhood or adolescence. It is characterized by multiple movement (motor) tics and at least one vocal (phonic) tic. Common tics are blinkin ...

post-traumatic stress disorder Post-traumatic stress disorder (PTSD) is a mental disorder that develops from experiencing a Psychological trauma, traumatic event, such as sexual assault, domestic violence, child abuse, warfare and its associated traumas, natural disaster ...

craniofacial abnormality Craniofacial abnormalities are congenital musculoskeletal disorders which primarily affect the cranium and facial bones. They are associated with the development of the pharyngeal arches. Approximately, 5% of the UK or USA population present ...

synesthesia Synesthesia (American English) or synaesthesia (British English) is a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to involuntary experiences in a second sensory or cognitive pathway. People with sy ...

bronchiectasis Bronchiectasis is a disease in which there is permanent enlargement of parts of the bronchi, airways of the lung. Symptoms typically include a chronic cough with sputum, mucus production. Other symptoms include shortness of breath, hemoptysis, co ...

, hypermobility,

Irlen syndrome Irlen syndrome (or scotopic sensitivity syndrome) is a purported medical condition of disordered visual processing, which, it is proposed, can be treated by wearing colored lenses. The ideas of Irlen syndrome are pseudoscientific and not support ...

, and

asthma Asthma is a common long-term inflammatory disease of the airways of the lungs. It is characterized by variable and recurring symptoms, reversible airflow obstruction, and easily triggered bronchospasms. Symptoms include episodes of wh ...

Personal life

Baggs described themself as genderless and

nonbinary Non-binary or genderqueer gender identities are those that are outside the male/female gender binary. Non-binary identities often fall under the transgender umbrella since non-binary people typically identify with a gender that is differe ...

in their writings. They also identified as a

lesbian A lesbian is a homosexual woman or girl. The word is also used for women in relation to their sexual identity or sexual behavior, regardless of sexual orientation, or as an adjective to characterize or associate nouns with female homosexu ...

and used any pronouns except ''it'', though they preferred the

neopronouns Neopronouns are neologistic third-person personal pronouns beyond those that already exist in a language. In English, neopronouns replace the existing pronouns " he", " she", and "they". Neopronouns are preferred by some non-binary individual ...

sie/hir and ze/zer. Baggs spoke about having other disabling conditions in addition to autism. 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 Psychedelics are a subclass of Hallucinogen, hallucinogenic drugs whose primary effect is to trigger psychoactive drug, non-ordinary mental states (known as psychedelic experiences or "trips") and a perceived "expansion of consciousness". Also ...

, 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 Google Groups is a service from Google that provides Internet forum, discussion groups for people sharing common interests. Until February 2024, the Groups service also provided a gateway to Usenet newsgroups, both reading and posting to them, vi ...

in the late 1990s, discussing their drug use and mental breakdown, stating that they had been diagnosed with

schizophrenia Schizophrenia () is a mental disorder characterized variously by hallucinations (typically, Auditory hallucination#Schizophrenia, hearing voices), delusions, thought disorder, disorganized thinking and behavior, and Reduced affect display, f ...

, 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". In 2013, Baggs said that they had been diagnosed with gastroparesis and were now using a feeding tube. 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. Baggs claimed that augmentative communication is somewhat common among autistic individuals, though they also supported the use of the controversial

facilitated communication Facilitated communication (FC), or supported typing, is a scientifically discredited technique which claims to allow non-verbal people, such as those with autism, to communicate. The technique involves a facilitator guiding the disabled person ...

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.

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 Respiratory failure results from inadequate gas exchange by the respiratory system, meaning that the arterial oxygen, carbon dioxide, or both cannot be kept at normal levels. A drop in the oxygen carried in the blood is known as hypoxemia; a r ...

Selected publications

* * * *Baggs, Amanda. "In My Language" (YouTube, 2007)

References

External links

Ballastexistenz

Cussin' and Discussin'
* https://ameliabaggs.wordpress.com/ (Poetry and creative writing blog) * https://withasmoothroundstone.tumblr.com/
Echoes from Nowhere
(Musical echolalia blog) * https://ameliabaggs.tumblr.com/ (Personal prose) {{DEFAULTSORT:Baggs, Mel 1980 births 2020 deaths YouTubers from California Autism activists Deaths from respiratory failure American disability rights activists American writers with disabilities LGBTQ bloggers LGBTQ people from California American lesbian writers Non-binary activists People from Mountain View, California Autistic writers People with factitious disorders Writers from Burlington, Vermont American YouTube vloggers American non-binary writers American activists with disabilities YouTubers from Vermont Non-binary lesbians Autistic LGBTQ people De Anza College alumni YouTubers with disabilities