“She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.” Sanjay Gupta
The Art of Autism is deeply saddened by the death of Mel Baggs (d. April 11, 2020).
In 2007, Mel’s (formerly Amanda’s) video In My Language was broadcast on CNN who did several special segments about them. The film depicts the different ways people who are non-speaking may communicate and how people who communicate differently are often dehumanized.
Mel was an advocate for facilitated communication.
“I have used a communication device as my main means of communication for most of my adult life. I’ve only been able to speak communicatively a couple times in the past thirteen years or so (the ability went away as unexpectedly as it showed up), so I am considered nonspeaking. I grew up sometimes able to speak and sometimes not, and with a complicated relationship to speech and receptive language. I slowly lost both speech-in-general and speech-as-communication starting in adolescence and continuing into early adulthood. I use both typing and picture symbols depending on what I need at the time. I communicate best outside of language altogether, but they haven’t made tools to interpret that. I am sometimes a good writer, but language is extremely tiring for me nonetheless.”
Mel’s blog is here. Our sympathies go out to their family. At age 40, a legacy has been left behind.
Read a poignant tribute by Michael John Carley here.
Saddened to hear of her death. She was the first nonspeaking person that opened my eyes to what a person thinks and feels who cannot speak. that was almost 20 years ago. I made a complete turnaround in how I responded to people that I worked with -and lost my job as a result !! But I am so thankful for the work she put into her blog. Of course since then I have been trying to spread information about resources for those who are nonspeaking and about people who can’t speak and what they can accomplish. Sadly there is no one I can point to that I can say ” I helped them find a better life” but thats not stopping me from trying !! Is there a place that has her obituary ?
Very sad. I used to talk to Mel online regularly about 20 years ago. Even though it’s been a long time, I’m still sad and surprised to hear of hir death. Hir writing abilities were very impressive. Hir essays were very clear and informative. I particularly like the essay titled “Past, Present and Future”. Sie had a beautiful website long ago, but unfortunately had to take it down due to harassment. I am autistic myself and although I have issues with many of hir opinions, sie did inform the world of some very important issues, like the harm caused by autism “treatment”. We lost a great advocate who had a lot of potential.
Also, a slight correction: sie was 39 at death, not 40. Sie was born in August 1980. The words “sie” and “hir” are proposed gender neutral pronouns. I believe they were hir preferred pronouns, which is why I’m using them.
I just want to point out that in an interview with Donna Williams, Mel Baggs claimed to have lost speech in infancy because of autism. So which is it? Lost speech in infancy (before children are actually expected to develop speech) due to her ‘autism’, or lost speech in adulthood due to her ‘rare movement disorder’? It can’t be both. Any wonder that Mel Baggs was regarded by some as a chameleon and a fake?