11/12/13

Autism Speaks Doesn't Speak For Autistics


Autism Speaks is the most well known non-profit touting that they spread autism awareness and education. On November 13, 2013 Autism Speaks will descent upon Washington lobbying for political action budgets. 

Autism speaks already has a plethora of corporate, celebrity, and media sponsors.  Thus, allowing them to be a very strong force. But there is a stronger force out there contending with autism speaks. What is this force? The autistic community. The parents, friends, and autistic individuals themselves. The real advocates of autism. 

Many people think Autism Speaks seems like a pretty decent charity. On the surface, they kinda do. They lobby autism awareness and yada yada yada. But if you actually listen to what they say, to what their goals are, you will see the sinister organization for what it really is. 

Need some examples? Ok, here are some facts about Autism Speaks via 
The Caffeinated Autistic 
 http://thecaffeinatedautistic.wordpress.com/so-what-is-the-problem-with-autism-speaks/

  • Autism Speaks does not have a single autistic member on their board. Not even a token autistic.  
  • Autism Speaks only spends 4% of their budget on “family services”.
  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, eliminate autistics. 
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for "Autism Everyday", which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel. The producer of this PSA (Autism Everyday, 2006) explicitly admitted that the film was intentionally staged to portray negative images of autistic people and their families. See this here: http://www.alternet.org/story/38631/autism%3A_the_art_of_compassionate_living
  • Autism Speaks is responsible for the atrocity known as "I am Autism", a short film produced by the same person who directed the 3rd Harry Potter movie and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
That is NOT an organization who understands autism. It's definitely not an organization that believes in autism awareness and acceptance. This is an organization that believes that autism is a disease. That autism is a plight against humanity. That autism is something evil. Even scientist who research autism disagree with this idealology. 

This organization compairs autism to deadly diseases, and natural disasters. They do very, very little to encourage support of Autistics. They use tragedy models of disability to directly shut down the principles of anti-ableism, disability justice work, as well as the disability civil rights movement. In Autism Speaks’ Strategic Plan for Science 2013-2017, the authors uses language that inaccurately refers to autism as a "disease," and discusses autism’s "cost" and "burden to society," and how autism is an "urgent public health crisis." 

Their views are beyond concerning. These fear tactics are appalling. As their co-founder Susan Wright states, Autism Speaks wants to "ultimately eradicate Autism for the sake of future generations."

kerima ├ževik, parent of an autistic child, will be fighting against Autism Speaks tomorrow. I love this quote from her:

"(I) thought this was the United States of America. I can speak for myself, and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic."

"The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?"

She goes on to say that, "Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York" 
University referenced here: http://www.nytimes.com/2007/12/20/business/media/20child.html?_r=0

Suzanne Wright's entire disturbing post can be found here: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Now, if for some reason none of this bothers you, then at the very least you should have some concern about where their money goes. According to their 2010 annual report, Autism Speaks spends OVER HALF of their proceeds to pay management salaries.

For further reading, please follow these links: 

An Autistic Speaks About Autism Speaks
http://m.dailykos.com/story/2007/05/19/336513/-An-Autistic-Speaks-About-Autism-Speaks

Say NO to Autism Speaks 
http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html?m=1

Autistics, Media, and Misrepresentation (Thinking Perons's Guide to Autism)
http://paulacdurbinwestbyautisticblog.blogspot.com/2013/07/this-is-who-i-am-this-is-what-i-do.html

Protesting Autism Speaks by Autisyic Hoya 
http://www.autistichoya.com/2012/11/protesting-autism-speaks.html?m=1

Alternet: Autism: the Art of Compassionate Living
Parents of autistic children strive to raise awareness in a world full of misconceptions about what autism really means. 
http://www.alternet.org/story/38631/autism%3A_the_art_of_compassionate_living

Autism Speaks Against Autistic Free Speech and Fair-Use Parody
http://m.dailykos.com/story/2008/06/22/540306/-Autism-Speaks-Against-Autistic-Free-Speech-and-Fair-Use-Parody

11/9/13

Maintenance

It seems like it's really hard for some people to grasp that having to be in the hospital from time to time is a perfectly normal aspect of dysautonomia. To others, it seems that being ill and in the hospital means that when you leave you'll be better - and that is what it normally means. But for someone with dysautonomia (or anything chronic for that matter). The truth is, being in the hospital is just a tune up. It's reestablishing equilibrium. 

This is my "normal"


Example: Last week something seriously irritated my gut. I have no idea what exactly it was, or if it was even something specific. For all I know, it might have just been my body being a defiant teenager. The rest of the week I was unable to keep anything down. Nothing. Not water. Not my meds. Nothing. I finally called my doc and he told me to get over there ASAP. Because apparently not keeping anything down for three days is a bad thing. So long story short, I'm in the hospital. Again. 

Sweet, sweet IV fluids... Oh, how I love you! 


And I'm facing the statements like, "Maybe you just need to try harder to eat even if you get sick." 
And questions like, "Well what are they doing to fix this?" and "What if you just do ___?" 

...*sigh*... 

Ummm, no, I can't try harder. No, I can't just do ___. And they aren't doing anything to "fix" this. This can't be "fixed".

There comes a point where you just have to accept that this is reality and part of this reality is hospitalizations from time to time. This one is mainly to give my gut a rest. I'm on IV fluids (miracle juice!), IV meds, and a strict clear liquid diet. After being here for a couple of days my vitals are back where they should be and I'm keeping some of my meds down. My stomach is still ridiculously irritated and I'm still needing IV fluids and meds. But once everything chills out, I'll be able to go home. I won't be cured and it won't be the last time this happens. This is just maintenance. And I'm ok with that. I'm just waiting for everyone else to be ok with it, too.