"It's about the dehumanization inherent in the system they worked in... It's drawn from my experiences and the experiences of other self-advocates I have known in the system. "
"The experiences of dehumanization are universal enough that most of them apply far beyond the target "audience."
Nov 3, 2006
"... this video explores the prejudice and dehumanization that surrounds cognitive disability of all sorts. Apologies for the splicing ...(and) ... the construction noises in the background..."
"Curiouser and curiouser....." The Amanda Baggs Controversy
Silentmiaow is Amanda Baggs, a disability activist. Apparently there controversy about what is her own disability actually is.
Presentation and Discussion of the Amanda Baggs Controversy, an anonymous blog, offering a detailed chronology of Amanda's life since 1995. The blogger questions the nature of Amanda's disability, providing attributing specific information to identifiable people who knew Amanda.
However, it is our belief is that, regardless of her true issue, Amanda is capable of stirring controversy and bringing attention to the humanity behind neurodiversity
What is her disability?
1995, at age 15, Amanda presented herself as having Dissociative Identity Disorder, (formerly called ‘Multiple Personality Disorder’).
*From about 1996 through 1998, she claimed to be Schizophrenic.
*In June 1997, she publicly apologized for deceiving both herself, and others, with her claim of Dissociative Identity Disorder.
*In about 2000, presented herself as having low functioning autism
In January 2007, she began publicizing her autism through YouTube videos which she filmed and edited.
In February 2007, CNN became interested in Amanda due to her YouTube video, and did several written and television segments on her.
*In mid-2007, several former 1994-1995 classmates of hers from Simon’s Rock College stepped forward to claim she was not autistic in any sense, and that she never reported being autistic.
Friends attest to observing psychotic behavior, suicide attempts and self-injurious behavior, aggression toward others, and auditory hallucinations.
*Slowly since 2000, and especially after her national media coverage with CNN, she has become considered by many to be an “autism rights activist”.
Blog entry May2, 2013
I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.
Why did I have to fight so hard for it?
I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.
The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:
They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.
My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.
Amanda's story has been covered in various media and video presentations
ACNN - A. Chris Gajilan
CNN - Amanda takes audience questions
CNN - Dr.Sanjay Gupta
CNN - Anderson Cooper blog - viewer comments
CNN - Anderson Cooper; Amanda blogs
NY Times - Tara Parker Pope
Not Yet Dead Blog - 2013 Stephen Drake
Read more from Amanda Baggs (Silentmiaow)
"The richness of life is there for everyone, and whether one experiences it or not is not dependent on whether or not one is autistic."