Traveling Show

Georgia Arc Network,
 
We’ve got great news!
 
The Arc has created the National Council of Self Advocates (NSCA) <http://www.thearc.org/page.aspx?pid=2660>  to facilitate greater involvement by self-advocates in leadership roles and advocacy.  We value the input that self-advocates from our chapter network can provide towards informing the work that The Arc does. 
Three self-advocates who serve on The Arc’s National Board of Directors, Barbara Coppens (CT), Joe Meadours (CA), and Kurt Rutzen (MN), are already guiding the development of this Council, but they need some help to make it a truly powerful national initiative. You may have caught a glimpse of their vision and enthusiasm at The Arc’s 2011 National Convention in Denver or during a webinar they presented in early January 2012.
The next steps are selection of the Advisory Group members (guiding the direction of the Council) and recruiting members to participate in the Council. 
That’s where you come in! You are receiving this email because you indicated in the Chapter Profile that your chapter “hosts, sponsors or supports a self advocacy group”.  We intend for the Advisory Group to consist of one representative from each state.  We want to offer you the opportunity to nominate someone from your local self advocacy group to serve in this leadership role.  Please complete this online application form <http://fs16.formsite.com/u024508129ncearc/form62/index.html>  by May 20th.  Advisory Group members must be members of a chapter of The Arc and should commit to participating in free monthly conference calls.  The Advisory Group will play a key role in developing the activities and goals of the National Council of Self Advocates (NCSA) of The Arc.  They will shape the future of involvement of self-advocates at all levels of The Arc. Those interested in serving should have demonstrated leadership experience with a desire to uphold the NCSA’s Purpose Statement:
To ensure that individuals with I/DD have a clear voice in creating lives that allow them meaningful choices for a promising future.  Including: 
Ø  Opportunities to be leaders in their communities,
Ø  Sharing the values of self determination and building skills for a brighter tomorrow,
Ø  Living and participating in society with the same rights and responsibilities as our neighbors,
Ø  Educating the community about Intellectual and Developmental Disabilities
The National Council of Self Advocates (NCSA) Membershiprecruitment began in March during Developmental Disabilities Awareness month. Information will continue to be in Fusion (our chapter e-newsletter) and on our website about how to become a member of the National Council of Self Advocates.  You‘ll receive more emails soon detailing how you can help your members join the Council. (Free membership is open only to those self advocates who are members of The Arc.)  Already nearly 100 individuals have joined NCSA!  Our goal is to involve 1000 self advocates from our more than 700 chapters.
If you believe you are not the right person at your chapter to be receiving this – please forward to the Executive Director.  Or, feel free to contact Laurie Ertz, Director, Chapter Excellence Group at ertz@thearc.org or # 202-534-3708 if you have any questions.
Thank you for your commitment to the involvement of self-advocates in the future of The Arc as together we build a stronger federation and accomplish our mission.   Consider nominating one (1) self-advocate from your chapter to serve on the NCSA Advisory Group.  NOMINATE by May 20, 2012 <http://fs16.formsite.com/u024508129ncearc/form62/index.html>

The email I copied was to us in Georgia, but it applies to people across the country.  If you are or know someone with an intellectual disability, look into it.

TW violence, child-murder, ableism, r-

My mother was infuriated this morning when I used the word “lie.”  Someone appeared to be doing just that.  She said it was worse than the words I try to censor in my half-hearted attempts to make Traveling Show seem professional.  She said I was making a terrible accusation and only God can be the judge.  I would love to abandon that word, but too many lies threaten or misrepresent people like me.

The most famous example is below:

http://www.cnn.com/2011/HEALTH/01/05/autism.vaccines/index.html

Wakefield lied.  He apparently had financial motivation.  He valued what he thought he would get more than public health.  People got sick:

http://www.ksn.com/content/news/health/story/Measles-cases-confirmed-in-southwest-Kansas/6SVmyVNBIkiH9oZJgVg0Ow.cspx

If the lie continues to spread, some will die.

Here is another:

http://www.veoh.com/watch/e133765ejW4nXnh?h1=Autism+Everyday

Autism Speaks has finally removed it from their Youtube channel.  They hid it instead of apologizing.  This is their favorite lie to tell: that autism in all its forms is the worst thing that could ever happen, that any autistic person .  They are rumored to have asked the mothers and children to look intentionally disheveled and to have kept those children out of their therapies for the preceding week.  Unlike some of you, I will not call words violent.  We need a specific term for physical aggression.  However, that falsehood stuck in the popular imagination has played into violence.  Violence is among its consequences.  Autism Speaks perpetuates the “child rocking in a corner” stereotype to raise funds for its vision of a world without us.  Some of its members no longer share that vision.  We may see better from them in the future, but that is what they have done so far.  They perpetuate ideas that are false and damaging to autistic people because they think the end justifies the means.  A cure for their children is worth damaging as many other lives as necessary.

The consequent popular perceptions of autistic people are best illustrated by something I observe.  I keep track of our dead, those that should be alive.  No one seems to get life imprisonment for killing an autistic person.  The penalty is five or ten years.  Being actively violent somehow makes a negligent homicide charge.  Life imprisonment is a civilized version of the death penalty.  As applied to murder, it is the law’s way of excluding someone from society because that individual excluded someone else.  What does it say about the perceived value of our lives that no one is permanently excluded from society for excluding us?  It says what we saw yesterday and the day before when we got a reminder that disability plays into medical decisions.

The stigma against the autism community can be boiled down to two false perceptions:

• We are retards.
• The people who are stigmatized as “retards” are inherently burdensome with an inherently poor quality of life.

I will stand up to every instance of false advertising, ignorance, and outright lies that uphold those ideas.  They are not violent in and of themselves, but they perpetuate violence, poor educational and career prospects, abuse, and the diversion of money that could have helped us to neo-eugenic organizations.  I will not give up a word and concept I use to undercut those things for anyone.