Comments on: My response to the “Articles of Understanding”, on video https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/ Mon, 22 Jan 2007 09:13:38 +0000 hourly 1 http://wordpress.com/ By: A https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13859 Mon, 22 Jan 2007 09:13:38 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13859 Hi,

I myself am not Autistic, but was reffered to your blog, by a friend.

Well, as someone who has faced several misunderstandings, in other ways, and just as one person to another, I wanted to let you know how much I admire the heartfelt way you responded in the post!

The truth which you expressed I’m sure is an inspiration to so many others! Bravo, for speaking your mind! Bravo!!

]]> By: ballastexistenz https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13858 Fri, 05 Jan 2007 20:45:30 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13858 I actually could identify with some of the experiences in there, although not from the perspective of the parent of course. That doesn’t make it a good video. There are good and bad ways, responsible and irresponsible ways, to approach any given topic. It is not the topic of the existence of certain kinds of people that bothered me, but what the actual portrayal was. (And I don’t mean the traits of the specific people, I mean the tone of the entire thing.) It will and has been used to harm people, badly.

I see a more social than individual-functional view of disability than you appear to, so my answer to that idea would be different than both your answer and the “we’re not disabled, we’re just autistic, that’s different” answer that I hear often and disagree with as well.

]]> By: Lisa https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13857 Thu, 04 Jan 2007 22:49:30 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13857 I am a mom to a “low-functioning” autistic daughter who sympathized with those mothers in the Autism Speaks “Autism Every Day” video. While I have NEVER considered killing my child, I have had days where I considered killing myself (I have chronic depression and was a suicide risk from my early teens untii I was finally put on the anitidepressant Prozac in my 20’s). My daugher, Judy, is 12 now. Not potty-trained. Non-verbal. Very tactile defensive (washing and brushing hair is a highly coordinated dance between my hands and her bobbing/weaving head). Constantly stimming on her videos and DVD’s. I don’t doubt she’s capable of amything. (Anyone that has the reasoning ability to climb from a picket fence over a privacy fence and back again in rollerblades to retrieve what was tossed over said fence is quite capable or at the very least extremely agile). That all said, I understand those mothers’ frustrations in dealing with a child who cannot speak, is prone to very violent outbursts (Judy once kicked my glasses off of my face and broke them outside of Blockbuster because we’d already been there and I didn’t want to go through the motions of renting a movie we already owned), who can’t participate in “normal” family activities, who doesn’t sleep, etc. and so on.

I love my daughter dearly. My anguish is my inability to understand her. I don’t want her cured. I want her to have the ability to communicate effectively. We’ve tried sign language. We’ve been trying PECS for more years than I can remember. Her only effective means of communicating are to pull me to what she needs or to bring me what she wants. This will not help her when I am no longer here to do these things for her.

I am so glad for you that you can use an augmentation device and a computer. But my heart aches with the fear that my daughter will never be able to do anything like that and that she will always be secluded by her inability to make herself understood.

I was thankful for the “Autism Every Day” video and I passed it on to my family and friends, simply because that showed a 13 minute snapshop of my life. I accept that. I am also thankful for the research that Autism Speaks supports to find the cause of autism.

My daughter is not diaabled by her autism. She is disabled by her inability to communicate. That is my only definition of “disability” right now. I’m sure many people would have issue with that.

Were Judy able to speak, via words, augmentation board, or computer, I would be the happiest, proudest, and probably most relieved, woman on earth.

Maybe the motives behind the “Autism Every Day” video weren’t the most altruistic, but, trust me, most of the images, if not all the sentiments, are my daily life and I’m glad someone showed in images what I am unable to convey in words.

Lisa Swortwood

]]> By: Autism Vox » Appearance and Reality: Apuleius’ The Golden Ass and Disability https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13856 Fri, 08 Dec 2006 14:41:07 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13856 […] Charlie’s appearance and the reality of Charlie’s cognitive functioning and ability do not seem to be correlated, if your make the (potentially incorrect) assumption that what you see is what you get. We unconsciously have certain expectations about what a “cognitively disabled” person might look like—not “smart” (and this is perhaps why some speak of autism as an “invisible disability”). If Charlie is not smart, he ought not to look as he does, the thinking is. Similarly, people might make the (equally incorrect) assumption that a non-bal autistic person is not smart because of their lack of language; Ballastexistenz’s YouTube video of herself challenges this stereotype. […]

]]> By: Julia https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13855 Fri, 17 Nov 2006 13:49:49 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13855 1) I like your hands. They’re beautiful, IMO.

2) That bit at the end with your cat made me wish once again that I weren’t allergic to cats.

]]> By: ettina https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13854 Tue, 14 Nov 2006 12:46:52 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13854 Nice cat. Clearly you two like each other. You showed your feelings for that cat in a very cat-like way.

I hope lots of people see this.

]]> By: anonymous https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13853 Tue, 14 Nov 2006 12:45:52 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13853 I think the video was also moving – the communication you had with your cat was wonderful. I guess what I’m missing – because I truly am ignorant to this is – is it you really typing the description etc. So you have excellent language that you are able to type – yet you can not speak? Is that right, or did someone type the “description” to help us better understand. Because if it is you yourself typing that description, and your language is that amazing yet you can not speak (non verbal) then i really want to learn more about how the brain works – that you could acquire such amazing written language – yet nothing verbally.

I hope this didn’t offend, I just really want a better understanding.
Thanks.

]]> By: Roger N. Meyer https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13852 Tue, 14 Nov 2006 12:44:30 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13852 Amanda,

I have never thought of you as low functioning, and I am uncomfortable making that distinction, whether it is about people I know or others I don’t. Thank you for your articulate criticism. I too believe both authors were speaking past one another, using cliches common in the disability “industry.” Thank you for your perspective.

Roger N. Meyer
Author, Asperger Syndrome Employment Work Book, and forthcoming “Peer Led AS Support Groups – What’s in it for Me?”

]]> By: Roo https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13851 Tue, 31 Oct 2006 22:51:41 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13851 Hi Amanda,
A friend of mine (you know her as Winnie) and I were discussing you today and she said you might want to hear my comments. I wasn’t sure how to contact you so I’m hoping you don’t mind my leaving this on your blog.

I see so much of my daughter in you! She is almost seven years old and is considered moderately impaired. She is non-verbal but quite good with PECS. She is very affectionate and loving. She is also timid and a bit shy, though she loves to explore at times. From outward appearances (due to hand flapping, tapping and other stimmy behaviors) one would not expect much from her.

I have learned from you (and please don’t take offense) that outward appearances are misleading and can conceal amazing people. You have given me great hope for my daughter and I feel ashamed that I ever viewed her capabilities by her outward appearance. Thank you for speaking out and putting yourself forward.

All the best…

]]> By: Bonnie Ventura https://ballastexistenz.wordpress.com/2006/10/29/my-response-to-the-articles-of-understanding-on-video/#comment-13850 Tue, 31 Oct 2006 08:33:17 +0000 http://ballastexistenz.autistics.org/?p=219#comment-13850 Hi Amanda. I thought you might like to know that all the posts in the “Sixteen Volts” blog, where obnoxious pro-eugenics twerps were ridiculing you a few months ago, have been deleted with an abject apology from the blog owner for, in his own words, “this ugly little blog that brought out the vilest in me and has now left me in deep shame for the rest of my life.”

http://sixteenvolts.blogspot.com

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