Sunday, June 29, 2014

, @SesameWorkshop you cant combat stigma by teaming up with theorganization that spreads it!

Dear Sesame Street,

         This was one of the flash blogs I have been more passionate about. I was raised with Sesame Street! It is a beloved childhood memory for me, along side lamb chops!  Growing up as a very small child I was very sick. I ended up having open heart surgery at the age of 4! One of my favorite movie was big bird goes to the hospital. I would always watch it before I went and over and over again at home. This show acted as a social story for me and greatly helped ease a lot of my anxieties. I admit to humming or playing the main song from it to this day at times I have had to take my retired service dog  or my pup in training to the vet. Especially to emergency vets. So you see, your show still has a place in my life today! So I wanted to make sure I did this blog post right.  Before I wrote this blog I did a bit of research and red some of the things there bloggers had posted, then I decided to read through the comments section.of a post shared by the huffington post. It was heart breaking to say the least. There were people and parents commenting about how this boycott and the boycott of autism speaks is all "high functioning," autistics and not by "real severe autistics," or that their kids had severe autism and autism ruins lives ect. There were a lot of great replies by other autistics to such comments. But those comments to tell the truth still hurt I started to wonder if I should write this blog?  I started to think that maybe I didn't have a place to speak on this, because maybe I was to "high functioning," and people would see me as to high functioning and thus anything I had to say on this matter would be tossed aside as not having value because I wasn't severe enough. I decided that, eepven if that does happen I still need to write this blog and get it out. So here we are!

        Why am I mentioning this??? Because this is the exact type of message autism speaks sends out! They promote an us vs them mentality in the autism community. Autism speaks demonizes autism and use fear about autism to raise awareness an get their funds.  When autistics have spoken out to them on this they dismissed them as to high functioning. This is a form of shaming I call functioning shaming. They are saying if you do not like what we say about autism you are to high functioning and your voice doesn't matter. The truth is this boycott isn't just by those with high functions autism you will be hearing from many with moderate to severe forms of autism as well. Functioning shaming is very damaging and the truth is those who tell you we are all high functioning and thus don't have the right to speak on this matter don't know us, they don't know our lives our challenges or struggles. Please don't fall for the functioning shaming. The truth is functioning labels are even real diagnostic labels and have been proven to be unsound, and they are often based on of someone can't speak or not. However there are plenty of people on the spectrum who are verbal to highly verbal but can not care for themselves or live independently and there are those who are nonverbal that have decent self care skepills and may one day live on their own.  Don't dismiss the many and diverse voices of this community.

 As well as reading what others have written I watched the video with Abby the fairy where the autism speaks partnership was introduced. Susan wright talked about an initiative to combat the stigma of autism and to celebrate the amazing in all children. I admit I was in a bit of shock, because you see autism speaks is one of the biggest promoters of the stigma surrounding autistics!!!!

It really baffles me that they claim to want to address the stigma and promote acceptance of autism cause they are the biggest contributors from their autism every day video to their address to congress last fall.

  They tell you they want to help fight the stigma and promote understanding and acceptance of autism,so let's examine a piece of their work really quickly. Tell me if this sounds like promoting acceptance and understanding for autism and combating the stigma. in their address to congress in a call to action they stated

 "These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.

This is autism.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  

This is autism.

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally.  Physically.  And especially emotionally.

Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

Maybe their child has been trying to bite them or themselves.

Maybe they can’t afford the trip to a doctor specializing in autism.

Maybe there is a waiting-list for ABA, speech and OT. 

Maybe their insurance won’t pay.

Maybe they don’t have the money to pay a special lawyer to fight for school services.

This is autism."


They went on further to say this;

""Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

This is a national emergency. We need a national autism plan – NOW."

They completely ignore the vast diversity of the spectrum and pain an image that everyone with autism is like this and that those who are like this basically aren't human. They don't celebrate their amazing they stigmatize and spread fear.

     How is this not promoting the stigma and demonizing those with autism? This isn't acceptance and fighting for acceptance this is pure unfiltered fear and dehumanization.  This isn't combating the stigma or showing the amazing at all!  It's just a lot of harm and stigmatizing. 

You see much the same message here I am Autism here and in Autism Everyday here.
Here is what autism speaks really says  the messages they have continually and my views on them.

Autism speaks tells you we are lost, locked away and unreachable 

   We are not we are here, we hear and understand everything you say even if we can not speak we understand you! We are right here listening waiting for you to reach out and meet us where we are at and to love us and accept us for who we are, not where you wish we were or who you wish we could be.

Autism speaks says we don't communicate: 
 we can speak or do speak we are ALWAYS communicating with you, it just isn't in ways you expect! It's ok to be anxeous it's diffrent I know but if you put aside everything you have been told  and all your preconceived notions of how things should be and really open your heart and your mind you can find away to reach us, but you have to be ready and willing to enter our world. 

Autism speaks tells you our lives are a tragedy,

   We are not tragedies we are people who live, yes we are disabled yes we have challanges but our lives matter we still have value the real tragedy is the fear and dehumanizations spread by organizations like autism speaks so they can get your money  


Autism speaks will tell you  we don't have a future,

      We do have futures and with the proper supports and services and with understanding and acceptance from the community we can have fulfilling and bright futures,  If we are taught to embrace our passions  and build our strengths then we are capable of anything we may dream! All we need is the right supports, services and acceptance 


Autism speaks tells you we are puzzles missing pieces

  But we are not, our lives and challenges  may be puzzling to you and navigating your world maybe puzzling to us, but we are whole and complete people! We aren't broken! Many autistics don't like the puzzle pieces because of the negative things autism speaks has attached to it, but the autism ribbon is multiple puzzle pieces and wasn't created by autism speaks, autism speaks has on single blue puzzle piece that reflects pretty well their one sided narrow view on autism.as well as the negative messages they spread. I how ever embrace the multiple puzzle pieces, they are bright and vibrant and uniques as each person on the spectrum, the variety of colors to me show there is a large and amazing spectrum of people living with autism, I also see them in a different way! Not that I or any other autistic is broken or missing pieces but rather that we are whole complete amazing beautiful individuals and it is the community that is missing pieces, these pieces are the proper supports, services acceptance and understanding, with those pieces we can become part of the community! However I do acknowledge and respect that some autistics do not see it this way and perfer to not use puzzle pieces and that ok too.


Autism speaks tells you they speak for and advocate for autistics 

The truth is they don't! Rather quite the opposite. They actively seek to silence autistics! From their very beginning autistics have spoken out to them, trying to explain to them why their adds hurt autistics and what they should change! They never listened! They shut out every one of them! A few years back a 14 year old girl made a parody  sight on them after they made their "I am autism," video that Basically demonized autism and was honestly really creepy! The site mirrored how autism speaks spoke about autistics only for NTs or non autistics they went after her, claimed she owed them a tone of money in lost donations then said they wouldn't make her pay if she signed over the rights to her website,! They BULLIED an AUTISTIC CHILD!!  To add to this autism speaks has never had a single autistic person on their boards of decision maker or in any meaningful positions in their organization. There is a stance in the Autism community Nothing about us with out us. Yet Autism speaks feels they can and should tell you all about us, without us and they have no problem trying to shut us up and silence our voices when we object to how they do it.  recently a bill has been up for re approval, the combatting autism act (think of this title for a minute) which was changed to the autism cares act (a much better title) there was a very big amendment to this bill that was purposes that autism speaks BLOCKED!! 

http://autisticadvocacy.org/wp-content/uploads/2014/06/SCHAKOWSKY_01_xml.pdf

For a clear explanation : http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/

That's right they blocked an amendment that would require autistics to be involve in several of the  boards and such that are part of the autism cares act! It that isn't actively trying to silence autistics what is?


               Autism speaks doesn't speak for autistics, autism speaks hurts autistics!

We can't continue with this type of awareness! You can not combat the stigma by partnering with an organizations that spreads it to get donations.  

Sesame Street you have always been about inclusion and treating each other as equals. This is why I hope you will and I ask you to please, hear our voices and reconsider this partnership with autism speaks!  You will find and see a ton of people reaching out to you asking you to reconsider this partnership as well! autism speaks doesn't value equality or understanding. This is an organization that really hurts autistics! We as a community are excited you want to create an initiative to promote acceptance and combat the stigma so Please consider other organizations such as Arc, The autism self advocacy network or the autism women's network. These organizations do promote, acceptance and true understanding. They value the lives views and voice of autistics something autism speaks does not.you cant combat a stigma by joining forces with those who promote it!

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