Monday, October 12, 2009

Autistic Community Protests Autism Speaks Walk for Autism

On Sunday, October 11, ASAN-Ohio State/Central Ohio members and other disability rights advocates protested Autism Speaks' Walk for Autism, held on the Ohio State campus. Nineteen individuals protested the organization's harmful advertising, unrepresentative leadership, and eugenic aims. Among the protesters were autistic self-advocates, students, faculty, staff, parents, children, and other community members.


During the first half of the event, protesters faced incoming car traffic and displayed posters with slogans such as "Nothing about us without us" and "Autism Speaks does not speak for me." Some drivers slowed their cars and honked in anger, while others rolled down their windows and shouted profanities. Several parents stopped by on foot and asked about the protest, and these individuals were polite, seemed willing to listen, and took flyers with them.


The second half of the protest commenced with the actual one-mile walk, and ASAN protesters greeted walkers with chants of nothing about us without us, Autism Speaks needs to listen, and we're people, not puzzles. Protesters also waved signs and distributed flyers that highlighted why Autism Speaks does not speak for autistic individuals. While chanting nothing about us without us at the walk's start, one walk team began shouting O-H-I-O in order to drown out the protest. A couple mothers told the protesters to "get a life." Many individuals, however, were intrigued by the protest and asked for details. Several indicated surprise at the breakdown of Autism Speaks' funding (with only 4% going to services) and lack of autistic representation in the organization, while others insisted that Autism Speaks needs to speak for autistic individuals.


ASAN protesters were constrained to one side of the street, and many of the walkers deliberately avoided walking near the protest line. Several campus police officers stopped by the protest site to request information as well as confirm that ASAN's first amendment rights were not being violated.


ASAN-OSU/Central Ohio thanks those involved in the protest, from planning to attendance. Several graduate students affiliated with the Nisonger Center lent their time, advice, and expertise, and aided with advertising and information-gathering. Additionally, many students and faculty from the English Department and Disability Studies program were in attendance at the protest, and many more helped to make the event a success.

YouTube footage of the event (captioned):


Friday, October 9, 2009

Protest against Autism Speaks' walk for autism

Please join us as we protest the Autism Speaks walk for autism this Sunday, October 11 from 8:00am to 12:00pm. We'll be meeting at the corner of Fred Taylor Drive and Borror Drive, right by the 4-H Center, and this is where we'll carry out our protest. We are actively looking for volunteers and fellow protesters. Our protest has been sparked by, among other things, Autism Speaks' recent PSA, titled "I Am Autism," which presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality. Please join us (even if only for a short while) as we speak back to Autism Speaks and the discrimination that such a campaign perpetuates.

Campus map & driving directions: http://www.osu.edu/map/building.php?area=&building=191

Note on parking:
The OSU Event Parking Coordinator is advising ASAN to park behind the 4H Center building in their parking lot.  There are about 55-60 spaces available.  Fred Taylor Drive (the road in front of the parking lot) will be blocked off at 10 a.m. to prepare for the walk, so everyone will need to be there before that time if they choose to park there. Getting dropped off near by or walking from main campus are the other options for coming later than 10am.  Thanks!

Note on signs: We will have some signs on hand, but please feel free to bring your own. Slogans we've suggested include:
  • Nothing about us without us
  • Autism Speaks does not speak for me 
  • I am not a puzzle. I am a person.
  • Learn to listen, Autism Speaks 
Please contact us at asan.ohiostate@gmail.com with questions.

Tuesday, September 29, 2009

Meeting & Protest against Autism Speaks

Meeting
The Autistic Self-Advocacy Network (ASAN) - Ohio State/Central Ohio chapter will be meeting on Thursday, October 1st at 5:45pm at the campus Barnes & Noble (1598 N. High St.). We'll be meeting in the coffee shop area. This will be our first meeting of fall quarter, and we're hoping to see some new faces! Among the things we'll be discussing: our upcoming protest of the autism walk, generating more signatures for our petition to President Gee, planning for the year, and proposing a session on autism, employment, and/or education for the Multiple Perspectives conference. OSU students, faculty, staff, and community members are welcome to attend!

Protest against Autism Speaks
Additionally, ASAN will be protesting the Autism Speaks walk for autism on Sunday, October 11 from 8:30am to 12:00pm. We'll be meeting at the corner of Fred Taylor and Borror Drive, right by the 4-H Center, and this is where we'll carry out our protest. We are actively looking for volunteers and fellow protesters. Our protest has been sparked by, among other things, Autism Speaks' recent PSA, titled "I Am Autism," which presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality. Please join us (even if only for a short while) as we speak back to Autism Speaks and the discrimination that such a campaign perpetuates.

Please contact us at asan.ohiostate@gmail.com with questions.

Petition to President Gee
Finally, ASAN-OSU has drafted a petition to President Gee, who is co-chairing the walk, asking him to withdraw his support from Autism Speaks. The petition describes Autism Speaks' unrepresentative leadership, its eugenic aims, and its harmful advertising. The petition is pasted at the end of this blog post. We're hoping to gather as many signatures from students, faculty, staff, and community members as possible. If you are an Ohio resident and would be willing to attach your name to the petition, please email us at asan.ohiostate@gmail.com with your name, email (we won't spam you), and position (e.g., student, staff, faculty, parent, Ohio resident, etc.).

Links
Email contact: asan.ohiostate@gmail.com

ASAN-Central Ohio blog: http://asancentralohio.blogspot.com/

Why Autism Speaks Does Not Speak for Us: http://asancentralohio.blogspot.com/2009/08/why-autism-speaks-does-not-speak-for-us.html

ASAN's response to "I Am Autism": http://asancentralohio.blogspot.com/2009/09/autistic-community-condemns-autism.html

Petition
Dear President Gee and the Board of Trustees:

We, the undersigned students, faculty, staff, and community members, urge you to reconsider your support of Autism Speaks. Autism Speaks is an organization that does more damage to the lives of autistic people than good through its unethical advertising, support for eugenic research, and unrepresentative leadership. We here pledge to refrain from supporting Autism Speaks, and we encourage you do to so as well, for the following reasons:
  1. Autism Speaks claims to speak for autistic people without a single autistic person on its board of directors or leadership committees. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals, and others to achieve quality of life and equality of opportunity. Moreover, those who do make decisions in Autism Speaks are far removed from the realities of our lives. It is worth noting that Autism Speaks’ highest paid employee, Chief Science Officer Geraldine Dawson, has an annual salary in excess of $600,000, more than the fundraising total of last year’s walk in Columbus.

  2. Many autistic people and their families find Autism Speaks’ advertising to be offensive. Their ads compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness, and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks’ advertising fosters pity, shame, and fear, suggesting that our very lives are mistakes and burdens.

  3. Autism Speaks’ fundraising goes toward genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result with respect to the autism spectrum. This is an issue of ethics and discrimination, wholly separate from typical abortion politics. We believe that money raised in the name of autistic people should go toward opportunities for quality of life, not toward our elimination. Autism Speaks’ research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people.

  4. As the president of the largest university in the country, your support of Autism Speaks sets precedent for other colleges and universities. We worry that other universities and other university leaders will follow suit and continue support for an organization that seeks to “eradicate,” in the words of Autism Speaks co-founder Suzanne Wright, autism and autistic people. While we applaud your desire to help autistic individuals and their families lead productive and fulfilling lives, supporting Autism Speaks does no such thing.
We recognize that your desire to make Ohio State a center for autism excellence is well intentioned. However, supporting Autism Speaks will not make our university a leader in disability rights or equality of opportunity, but rather a leader in unequal representation, eugenics research, and flagrant ableism. In signing this petition, we announce that we will not participate in the Autism Speaks walk for the aforementioned reasons. We call upon you to heed our concerns and those of many other people with disabilities, family members, professionals, and countless others. Simply put, we call upon you to end your affiliation with Autism Speaks.

Wednesday, September 23, 2009

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

Press Contacts:
Ari Ne’eman
The Autistic Self-Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org

FOR IMMEDIATE RELEASE
Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”


Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html

“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/

“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
I have declared war on you.”

Emily (Parent): http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate): http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

Self-Advocacy @ Ohio State: Student Involvement Fair

On the afternoon of Monday, September 21st, the Ohio State chapter of the Autistic Self-Advocacy Network (ASAN) worked a table at the student involvement fair, a community event that boasted over 500 student and community organizations. The members of ASAN-OSU distributed informational handouts during the event, including a flyer entitled "Why Autism Speaks Does Not Speak for Us," authored by Meg Evans of ASAN-Southwest Ohio. Members also solicited signatures for a petition against the upcoming Columbus Walk for Autism Speaks and OSU President E. Gordon Gee's continued support of the walk. In keeping with themes of self-advocacy and protest, on display at the ASAN table was a poster with prominent slogans such as nothing about us without us; we're people, not puzzles; and autistic people can speak for themselves. ASAN-OSU also distributed candy in ziploc bags with ASAN labels attached.


ASAN's table display. Two posters. A white poster that reads, in red letters, "ASAN - The Autistic Self-Advocacy Network." A black poster sits slightly below. In blue and red lettering, it reads "nothing about us without us!" Beneath the slogan sit two red arrows pointing in opposite directions. One arrow reads "autistics speak. learn to listen" and the other reads "we're people, not puzzles." A rainbow infinity sign sits between the two arrows. At the bottom sits a label that reads "The Autistic Self-Advocacy Network."

At the event, ASAN-OSU distributed approximately 450 flyers to community members, students, faculty, and staff. The signature tally on the pledge to President Gee has reached 31, not counting ASAN-OSU members, and the chapter anticipates that this number will increase over the next week. Additionally, ASAN-OSU members held many conversations with supporters as well as non-supporters of the neurodiversity movement. For instance, one woman wearing a Walk for Autism shirt, when approached with a flyer, refused to take one and claimed that Autism Speaks needed all available support, implying that ASAN-OSU's efforts are a distraction. Additionally, many women throughout the course of the event -- most of whom were wearing pink Alpha Xi Delta t-shirts -- refused flyers, one even making fun of the ASAN name (claiming that the group misspelled "ASIAN"). Of note is that this particular sorority has chosen autism awareness -- and, more specifically, Autism Speaks -- as its local and national philanthropy project. Several other students, including a number of student athletes, engaged in similar taunts when passing by the ASAN table.

A few autistic individuals, as well as several students with autistic relatives, stopped by the table and expressed relief at ASAN's presence on campus. ASAN-OSU has also begun to develop relationships with other human rights-oriented groups through this event.

In order to continue the efforts made at the involvement fair, ASAN-OSU/Central Ohio has recently begun a new advertising campaign directed toward the Autism Speaks walk. Arrow-shaped flyers bearing slogans such as "Walk if you support eugenics" have been affixed to countless walk recruitment flyers, as can be seen in the attached images. Upcoming events include the group's first fall meeting, which will occur on Thursday, October 1st at 5:45pm at the campus Barnes & Noble. The group will also protest the autism walk on Sunday, October 11 from 8:00am to 12:30pm and is actively looking for volunteers; if you are interested, contact asan.ohiostate@gmail.com for more details. Between now and the walk, the group anticipates distributing flyers and soliciting petition signatures in heavy foot-traffic areas near campus.


A white arrow with blue letters points to a walk flyer. The arrow reads "walk if you support stereotypes" and contains ASAN-OSU's contact info. An orange arrow, pointing in the opposite direction, reads "we're not alarming, nor are we a puzzle."


Finally, a note of thanks: ASAN members in attendance at the involvement fair were Melanie Yergeau, Hillary Spears, Stephanie Ballam, Whitney Brooks, and faculty advisor Cynthia Selfe. Several other ASAN members contributed to the success of the event, creating flyers and other take-aways, and included Jeffrey Strasser, Noranne Cochran, Justin Rooney, Kristin Rohrbeck, and Natalie A. Finally, many other non-OSU ASAN members made significant contributions in terms of promotional materials and advice, including ASAN President Ari Ne'eman, ASAN-Southwest Ohio director Meg Evans, and ASAN-New England director Andrew De Carlo.


Melanie in front of the ASAN table




Whitney, the faculty advisor Cindy Selfe, and Stephanie in front of the ASAN table.

Tuesday, September 8, 2009

Next Meeting: Thursday, September 10 @ 5:45pm

Our next meeting will be held this Thursday, September 10, at 5:45pm at Barnes & Noble (1598 N. High St.). We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

Our agenda includes (but is not limited to) the following items: generating signatures for our petition against the Autism Speaks walk; setting up a meeting schedule for the school year; discussing employment; finishing a grant application; dividing flyers & advertising tasks for the new school year; and planning for the student involvement fair (petition, flyers, poster, making playdough, setting up, etc.).

Sunday, August 16, 2009

Why Autism Speaks Does Not Speak for Us

Written by Meg Evans, ASAN-SW Ohio

Autism Speaks and the organizations that merged into it, including the National Alliance for Autism Research, have provided many grants to fund genetic studies and other autism-related research. In 2005, grant recipient Dr. Joseph Buxbaum predicted a prenatal test within 10 years.[1] Autism Speaks' co-founder Suzanne Wright made the organization's eugenic aims equally plain, to "eradicate autism for the sake of future generations."[2] There is a page on Autism Speaks' website supporting the efforts of James Watson and others "to identify autism susceptibility genes."[3] Watson resigned in disgrace from his position as the Chancellor of Cold Spring Harbor Laboratory after making grossly racist remarks,[4] and he has long advocated genetically enhancing children and eugenically exterminating people with cognitive disabilities, which he characterizes as "curing stupidity."[5]

Autism Speaks created a video in 2006 entitled Autism Every Day, which the producer admitted was staged to show negative images.[6] In one horrific scene, a mother described her thoughts of murdering her autistic daughter while the child was actually in the room.[7] Soon afterward, two board members of Autism Speaks said in a magazine interview that they sometimes hoped their autistic son would drown in their backyard pond.[8] Television ads by Autism Speaks have compared the odds of a child being autistic to the odds of a child being struck by lightning, [9] or killed in a car wreck, implying none too subtly that a child might as well be dead as autistic.

Two prominent figures at Autism Speaks, communications executive Alison Tepper Singer [10] and scientific advisor Dr. Eric London,[11] resigned in 2009 because they objected to the organization's complicity in perpetuating the groundless urban legend about vaccines and autism, which has led to reduced vaccination rates and tragic deaths of young children from vaccine-preventable diseases.[12] Dr. London warned bluntly in his resignation letter that "[i]f Autism Speaks' misguided stance continues, there will be more deaths…"[13]

Although Autism Speaks claims to speak for autistic people, it does not have—and never has had—even one autistic person on its board of directors or in its leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals, and others to achieve quality of life and equality of opportunity. Autism Speaks' exclusionary attitude toward people with disabilities is clearly shown in a recent video entitled Neighbors,[14] which suggests that autistic children will have no friends unless they are taught to suppress their autistic mannerisms by means of behavioral therapy. The underlying message is that people with disabilities cannot be accepted as they are.

References:
[1] MSNBC, Feb. 23, 2005; http://www.msnbc.msn.com/id/7013251
[2] Parade Magazine, Jan. 27, 2008; http://www.parade.com//articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything
[3] http://www.autismspeaks.org/inthenews/wrights_cold_spring_harbor.php
[4] http://www.independent.co.uk/news/science/fury-at-dna-pioneers-theory-africans-are-less-intelligent-than-westerners-394898.html
[5] Sun-Herald, March 2, 2003; http://www.smh.com.au/articles/2003/03/01/1046407801233.html
[6] WireTap Magazine, July 11, 2006; http://www.alternet.org/wiretap/38631
[7] http://www.youtube.com/watch?v=C7NTfZzS9b8
[8] Town & Country Magazine, August 2006; http://www.autismspeaks.org/docs/Town_and_Country.pdf
[9] http://www.metacafe.com/watch/1086177/autism_awareness_lightning
[10] Newsweek, Jan. 19, 2009; http://www.newsweek.com/id/179998
[11] Science, July 10, 2009; http://www.sciencemag.org/cgi/content/full/325/5937/135-a?ijkey=vWdUsXAiJkdCE&keytype=ref&siteid=sci
[12] Discover Magazine, June 2009; http://discovermagazine.com/2009/jun/06-why-does-vaccine-autism-controversy-live-on
[13] http://www.autismsciencefoundation.org/ericlondon.html
[14] http://www.youtube.com/watch?v=7rVX_nSLFtg&feature=channel_page

Wednesday, August 12, 2009

Next Meeting: Thursday, August 13 @ 5:45pm

Our next meeting will be held this Thursday, August 13, at 5:45pm at Barnes & Noble (1598 N. High St.). We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

Our agenda includes (but is not limited to) the following items: discussing a September event in Fremont, OH; discussing a letter-writing campaign about President Gee and the Autism Speaks walk; and brainstorming ideas for an event that involves handing out ASAN flyers in a pedestrian-heavy area.

Sunday, July 5, 2009

Autistic Pride Day: Recap, Photos

Note: APD is typically held on June 18.


Eight ASAN members, led by ASAN Central Ohio Chapter Director Melanie Yergeau, celebrated Autistic Pride Day 2009 by visiting the Ohio statehouse on June 17, 2009 and meeting with two state representatives, Rep. Kevin Bacon and Rep. Ted Celeste. The group handed out flyers and briefly explained the goals and work of ASAN.

Several people shared stories about employment, education, and community living supports during the meeting with Rep. Bacon. Melanie Yergeau explained to him that ASAN is very ideologically different from Autism Speaks. Autistic culture also was discussed and compared to other disability communities, such as Deaf culture.

The meeting with Rep. Celeste began with a discussion of the social model of disability and ASAN's participation in cross-disability communities. Rep. Celeste talked about autism insurance and was knowledgeable about ABA and the issue of excluding aversives from coverage. He thanked the group for bringing this issue to his attention. ASAN plans to follow up by sending him relevant literature and studies on aversives.

ASAN's meeting with Rep. Kevin Bacon


ASAN's meeting with Rep. Ted Celeste


ASAN at the state house

Thursday, June 25, 2009

June 30: Protest Ohio's funding of institutions/nursing homes and Ohio's funding cuts for community-based living supports

ASAN-Central Ohio/Ohio State is trying to gather as many people as possible to attend a protest on Tuesday, June 30. The event has been organized by Sue Hetrick and other disability organizations to protest Ohio's funding of institutions/nursing homes while cutting funding for community-based living services. (See more details below.)

ASAN-Central Ohio will be meeting at the campus Barnes & Noble on Tuesday morning at 9:00am to make some signs. We will then bus down to the state house for one or two hours (and those who wish to stay longer may do so).

If you are interested in joining our group, please leave a comment or email us at asan.ohiostate@gmail.com by Monday, June 29.

JOIN US AS...
WE PROTEST
OHIO’S FUNDING OF COSTLY INSTITUTIONS/NURSING HOMES WHILE CUTTING MORE ECONOMICAL HOME AND COMMUNITY BASED SUPPORTS AND SERVICES

WE PROTEST
OHIO’S FUNDING FOR SEGREGATION OF PEOPLE WITH DISABILITIES AND THE ELDERLY THAT DENIES CHOICE IN WHERE ONE WORKS, LIVES AND SOCIALIZES

ALL OHIOANS HAVE THE RIGHT TO BE PRODUCTIVE, CONTRIBUTING, INDEPENDENT CITIZENS AND OHIO TAXPAYER’S HAVE THE RIGHT TO RESPONSIBLE USE OF ITS PUBLIC DOLLARS

When: Tuesday, June 30
Where: Ohio Statehouse, Third Street Side, Columbus
When: 8:30AM to 5 with “primetime” from 11AM to 2PM
Who: People with Any Disability, the Elderly, families, friends, advocates, and concerned Ohio taxpayers


Bring a chair, blanket, water, lunch, sunscreen or raingear! Be prepared for a peaceful demonstration, but one that is persistent and vocal!

This is not a RALLY it is a PROTEST!

Note: As this is a grassroots demonstration no one group or individual can or will be responsible for attendant care though attendees are usually willing to support their brothers and sisters in this fight! Signs are permitted and encouraged -- however, they cannot be attached to sticks or poles!

Contact: Sue Hetrick 866-575-8055

Thursday, June 11, 2009

Autistic Pride Day, Wednesday, June 17, 9:15 am-12:00pm

Event.
In recognition of Autistic Pride Day (which typically falls on June 18 of each year) members of the Central Ohio/Ohio State Autistic Self-Advocacy Network will meet with two state representatives to discuss the policy issues that are important to autistic people. We will then hold a picnic/brownbag lunch on the state house lawn. Members of the community are welcome to join us for this event.

RSVP and Contact Information.
Those interested in attending should RSVP by the afternoon of Friday, June 12. Please send an email to asan.ohiostate@gmail.com.

Itinerary.
8:45am For those uncomfortable with getting to the state house on their own: meet Hillary and Melanie at the campus Barnes & Noble. We’ll take the #2 bus down to the state house. (Bring appropriate fare—$1.50 each way.)
9:15am Everyone meet in the lobby of Riffe Tower, 77 S. High St., Columbus, OH.
(For those parking, rates are $2/hour.)
9:30am Meeting with Representative Kevin Bacon
10:00am Meeting with Representative Ted Celeste
10:30am Brief tour of the State House
11:00am Lunch on the state house lawn! Please bring your own lunch, in a lunch bag or backpack. (If it rains, we’ll eat inside the lobby of Riffe Tower.)
12:00pm Head home, or bus back to Barnes & Noble with Hillary and Melanie.

About.
The Autistic Self-Advocacy Network (ASAN) works to advance the autistic culture movement and to improve the representation of the autistic community in public policy deliberations about autism and disability affairs. The Central Ohio chapter of ASAN seeks to provide opportunities for social and community involvement in and around the Columbus area.

Autistic Pride Day (cited from Wikipedia) is a celebration of the neurological diversity of people on the autism spectrum and is about shifting views of autism from “disease” to “difference.” Autistic pride asserts that autistic people have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers.



Tuesday, June 2, 2009

ASAN Submits Amicus Brief to the US Supreme Court

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court's analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child's IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child's IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

--
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Monday, June 1, 2009

Vernon Smith

Here is a worthwhile post by Professor Stephen Hsu. Vernon Smith is a noble prize winning economist and an Aspie. The post itself links to a number of other useful articles on Smith. I found his discussion of teaching to be particularly meaningful to me in my situation as a teacher.

There are People Out There That John Best Hates More Than Us

John Best of Hating Autism has said this about disability civil rights:

… You hurt your case by mentioning queers. Nobody is opposed to you for your religion or your Asperger's. When you align that with queers, you include yourself with severely deranged people. No decent person wants their kids to have to listen to that acceptance crap for perverts. We don't accept it as an alternative lifestyle and we don't want our kids influenced by it. Keep it in the closet and nobody cares.
You say you don't align yourself with Ne'eman but you call yourself autistic the same way he does. You aren't. You have Asperger's. Call yourself that and I don't give a damn what you do. Identify yourself as having the same condition as my kid while it looks like your AS is no big deal and I have a big problem with it. You're telling the world that "autism" is no big deal which is completely untrue. Autism is a nightmare for the person who has it and everyone who has to deal with it.
I just spoke briefly with Ne'eman on a radio show. He dodged my concerns about his abuse of the word "autism" and ignored my contention that he misrepresented the truth with his anti-cure rhetoric. I was cutoff before I could respond to his nonsensical political crap.
Yes, he speaks well when unopposed but he would not fare very well in any sort of debate with someone who sees through his bogus avoidance of the truth.

Do you need any more proof that Asperger hatred is not any different to being homophobic? I have no idea what Mr. Best thinks about Judaism but he has already gone on the record as saying that people with Aspergers are mentally ill and need to be cured. That sounds like opposition to me. I figure we are as safe with Mr. Best with our Asperger syndrome as homosexuals are in the closet.

Ironically enough, Melanie sent me the link to this radio exchange last night. (Start it around the 37th minute) I listened to it and I must say that it was nice to hear the voice behind the blogger; Mr. Best even sounds like my stereotype of a bigoted hick.
I guess Mr. Best and I must have heard two very different exchanges. He comes out throwing accusations at Ne’eman, none of which have anything to do with reality. At the moment Asperger syndrome is listed as a type of autism so no one is conspiring here or telling any lies. We are simply running with the medical classification on the ground. No one is trying to deny anyone medical attention. I think Ne’eman did a very good job on that front outlining the sorts of help he is trying to get for everyone from across the spectrum, including Mr. Best’s son. I think that any fair minded person listening to that exchange would have come away thinking that Mr. Best is a brain damaged pig and that Ne’eman is a sterling gentleman. Now who stands in need of a cure? It is a pity that we cannot cart bigots off into hospitals and make them take special education classes.


Wednesday, May 27, 2009

Next Meeting: Thursday, May 28 @ 5:45pm

The Central Ohio/Ohio State University chapter of ASAN will be meeting on Thursday, May 28 at 5:45pm at the campus Barnes & Noble/Long's Cafe, 1598 N. High St. We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

The main goal of this meeting is to plan for a small event commemorating Autistic Pride Day in June.



Saturday, May 23, 2009

Prism Vox Episode #3

Noranne has posted another episode of Prism Vox. It features some questions sent to her by yours truly. One the questions is would you want your child to be autistic. This question has a personal side for me. A few weeks before my now ex girlfriend dumped me she asked me this very question. My response, like Noranne's, was that I do not care but if I did have an autistic child I would be that child's advocate and go all out for their protection.

Thursday, May 21, 2009

Responses by Dylan

Our friend Dylan has posted a pair of comments on earlier posts. Since I do not want them to be lost I am posting both of them here. In response to "New York Times Article on Asperger Marriage" Dylan commented:

I can understand your feelings towards the opposite sex. Bear in mind that I am in no way undermining your opinions and personal feelings towards the opposite sex. However, understand that these feelings of uncertainty about the opposite sex are not uncommon, even among neurotypical people. Although I draw much of my opinions for my own personal experiences with relationships (most of which have been unfortunately negative), I can easily understand that my case is not only common with those on the spectrum, also with people not on the spectrum, or neurotypical. Feelings of betrayal and uncertainty often stem from a lack of an understanding of the other person. However, as a defense mechanism that in innate in the human process of thought and understanding, we tend to place uncertainty as a bad thing, coupling the unknowing with a negative mindset. Although there is nothing wrong with that, it is also necessary to understand that this sort of behavior is more instinctual than anything else, and it is our job to sort out the premonitions we create from what is factual and tangible. I can fully understand the desire to have the partner speak to you more. That is to say that I understand your desire for the spoken word rather than subtle facial expressions and the like. Often times the replacement of actual spoken word with expressions and gestures of the face, hand and body is quite an evident aspect in human interaction. Keep in mind that I fully understand that the thought process of someone with AS (Asperger’s Syndrome) greatly differs to that of a neurotypical, but, and I say this with the upmost respect, it is also imperative that we understand the other side to that statement, being that although our thought process differs from “neurotypicals”, is also applies for them. This means that, with each side having differences than the other, it is important to find middle ground between each side, and finding mediation that works with each person.


In response to "Michael Savage Banned From England" Dylan commented:

Not to disagree with you, but he does hold some merit on some aspects of his case. Autism for a student means special treatment, regardless of the intentions of the student. Student A, who has Autism, may be wary of the treatment but accept it anyway, understanding that the special education will help him to succeed. Student B, who also has Autism, may want to exploit the special education. I’ve heard several students with Autism and AS (Asperger’s Syndrome) almost use their diagnosis as an excuse for delinquent behavior, and having more leverage over teachers and peers. An example could be: If student A who does not have Autism does action X which gets him a detention, he may give some excuses as to the situation. The teacher may or may not listen, but he or she would be more inclined to give that student the punishment. Student B who does have Autism may also do action X, but they could say that because of their disability they have trouble controlling themselves. This may or may not actually be true, but the teacher would not only be inclined to take away the punishment for student B, the teacher would almost be obligated to do so. What I’m saying is is that there are some cases that people with Autism use it to their advantage. Although it is a spectrum disorder, many people may not fully understand the definition of spectrum disorder, and expect each autism-affected student to act the same way, and often forgive them for thing that normal students would not get away with, regardless if being excused for those actions was the Autism-affected student’s intention. I’m not sure if banning him from the country was the best idea, though. It wasn’t like he was a violent person, or would harm anyway because of his opinion. There could be many people with the exact same opinion as he, but the only difference is that he is able to vocalize his opinion on a wide-scale. That really shouldn’t constitute a banishment or restriction from entering a country. Also, being a “right-wing” shouldn’t matter either. Conservatism may not exactly look down on Autism, but more so the funding that is to be given to the cause, which many often expects to come from the government. I don’t agree with much that he says though, Autism is not a fraud in any case. However, going past his ranting and raving there is a sliver of truth that he takes from, being that there are some people, that have Autism, that do use their disability to their own advantage in a way that is not necessary to them.


Tuesday, May 19, 2009

Next meeting: Thursday, May 21 @ 5:45pm

The Central Ohio/Ohio State University chapter of ASAN will be meeting on Thursday, May 21 at 5:45pm at the campus Barnes & Noble/Long's Cafe. We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

At our meeting on Thursday, we hope to discuss the following: a possible activity for Autistic Pride Day (June 18), encounters with another campus autism organization and how to address these issues, our funding situation, staying connected with the Columbus/central Ohio community, and any issues that others in our group would like to address.


Download PDF flyer:



Questions? Leave a comment or email us at asan.ohiostate@gmail.com.

Monday, May 18, 2009

New York Times Article on Asperger Marriage

As people struggling with the stigma of not being able to empathize with others, one of the major concerns for those on the spectrum is the ability to successfully date and marry. With this in mind it is interesting to read David Finch’s article in the New York Times, “Somewhere Inside, a Path to Empathy.” David Finch did not discover he had Asperger syndrome until after he had been married for several years to a speech pathologist, who works professionally with autistic children. It was his wife who finally fingered him as an Asperger person. As someone who lived for years as someone who was not exactly normal and was only diagnosed with Asperger syndrome as an adult, I find David’s discussion of trying to fit in and lead a “normal” life to be remarkably touching.

Dealing with members of the opposite sex has certainly been a challenge for me. I have had my ups and downs and am still looking. Because, as an Asperger person, I put so much emphasis on what people say, I have often been taken aback and have felt betrayed by members of the opposite sex who fail to follow through with the words that come out of their mouths. I have often felt lied to. In a very technical sense I may be right. Part of learning about neurotypical thinking for me has been learning to accept these failures with some sense of charity and to try to not take it as personally.

Saturday, May 16, 2009

Newsweek Article on Ari Ne’eman

Newsweek has put out an article on Ari Ne’eman, “Erasing Autism.” The issue of research into the genetics of autism is certainly a tricky issue. One does not wish to hold back legitimate scientific research. On the other hand there are important questions to be asked particularly since we can count on this research being abused by the anti neuro-diversity people. I actually wrote a piece on this last year, back before Sarah Palin completely imploded on herself.

Speaking of the anti neuro-diversity people, they are already up in arms, which tells you how good an article it was. Hating Autism even accuses Newsweek of sodomizing autistic children. This strikes me as strange because the article is remarkably balanced. Upon reading the article I do not get the sense if the author of the article, Claudia Kalb, is for us or against us. She explains what Ari believes, gives a sense of what kind of person he is and offers some context as to the politics of autism. This is not a criticism of Ms. Kalb, on the contrary she is acting the part of a responsible journalist. One can only include that our anti neuro-diversity friends have a problem with anything that even acknowledges that articulate autistics, supporting neuro-diversity, even exist.

In regards to neuro-diversity, in case you have not seen it, please check out this twenty minute video, "Positively Autistic," done by the Canadian Broadcast Company last year on the topic. It features interviews with some of my favorite people in the autism world. First off it has Ari Ne’eman. Estee Klar of Joy of Autism is also interviewed. Ms. Klar is not on the spectrum, but is the mother of an autistic child, Adam. With neuro-diversity politics so often degenerating into autistics fighting against the parents of autistics it is good to know that people like Ms. Klar exist. Maybe we could start a “Mothers Who are Not Like Jenny McCarthy Award” or, to keep it short, a “Mom Award” to mothers and fathers, like Ms. Klar, who love and accept their autistic children instead of simply trying to “cure” them.

Sunday, May 10, 2009

First online meeting

We're hoping to test an online meeting/chat this Tuesday, 5/12 from 5:30 to 6:30pm. (We'll still be meeting face-to-face on Thursday, 5/21 at 5:45 at Barnes & Noble.) We will take notes during the online chat for those who cannot attend.

For the online meeting, we plan to use Gmail chat. We'd like to test this and see how it works for us, and if all goes well, we can make this the general format for a monthly online meeting. (And we'll be sure to provide more advanced notice of online meetings in the future.)

If you are interested in joining us for this online meeting, please do the following:

  1. If you don't have a Gmail account, go to gmail.com and click "create an account." Fill out this page to create your account. (If you have a Gmail account already, skip this.)

  2. Write to asan.ohiostate@gmail.com and provide us with your Gmail name.

We'll be sure to send you a chat invite and everything you need to know. Gmail is free and you won't be required to download any program to participate -- everything appears in your web browser. We decided that this might be the easiest route for us all to connect.

If you'd like to participate but don't have access to a computer, don't feel comfortable with Gmail, or would rather not type, etc., please let us know. At least one of us will be at Ohio State with a laptop during the meeting, and we can arrange to meet and/or double up on computers.

Finally, please forward this to those who you think might be interested. And if you have questions, let us know. :)

Friday, May 8, 2009

NFB Disability Law Symposium Keynote Address by ASAN President Ari Ne'eman

On Friday, April 17th, 2009, Ari Ne'eman delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at: http://www.nfb.org/nfb/Law_Symposium.asp.

The past half-century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, women’s rights, disability rights, immigrant rights, GLBT rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy and societal frameworks. And yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. This holds us back.


We go out to the world and we tell them in so many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.

But where do rights derive? That is the question. The enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights into a central government for the purpose of securing the remaining ones. This theory carries with it much charm – it fits with our nation’s philosophy of government by the people, for the people, it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. Our community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.

What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights”. I believe that to be true – for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.

You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights was not even on the agenda. Disability was – and in so many senses, still is perceived – as a problem that should be solved by charity and whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as far as rights crusaders were concerned – that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there but for the grace of G-d go I angels who gave of themselves and found meaning in those tragic burdens.

Then things started to change – not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lied not with G-d or with medical defects but with a society that was built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment – and we have each found it at different points in our lives – but in that moment, we saw power abused, we saw injustice – in short, we saw wrongs and so our rights were born. In that moment – that epiphany – the world changed for us, and disability rights were born.

In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.

The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones home? It is a direct outgrowth of our experiences with the British crown and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition – still partial – of the legacy of lynching, segregation and racism. Anti-Semitism was driven from the country club to the conspiracy theory fringe when the knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. To quote Harvard’s Alan Dershowitz, rights come from wrongs.

Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.

What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show “compassion” and “pity” for the disabled. This was not entirely our fault. We’re dealing with a media and, as a result, a general public that has not even begun to understand the nature and implications of disability rights. But regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement and all the progress it has brought is still seen, in most circles, as one of charity or worse still as a stopgap until – be it by eugenics, euthanasia or medical cures – disability is no longer a part of the human experience. This is what Dr. tenBroek was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.

This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?



The answer is because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the “true” civil rights movements.

To them, this is still very much a conversation about need – not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.

I am reminded, by way of example, of an experience my group, the Autistic Self Advocacy Network, had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes”, consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of Autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and e-mails, our story began to hit the media – with the UPI headline, “Ads anger parents of autistic children.”

Of course the story was accurately reported in other news sources and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public were consumer-controlled disability rights organizations, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.

And so even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.

The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions – much less the many Americans with disabilities who still must suffer this segregation. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People”. They don’t see Deaf President Now at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment – since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed into the same, “unfortunate but unavoidable” category as all disability-related misfortunes tend to be.

A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, where the court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the Justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly–and perhaps hardheartedly–hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law, they are portrayed as matters of charity that good hearted people engage in.

The good news is that this does show us what our next steps should be. It explains the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by and for people with disabilities. To quote Ed Roberts, “the greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and restored agency to our community is one way for us to take back our voice.

Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics and more distance from our dream of being recognized as equal citizens in this society, they perpetrate upon us an obscenity. This obscenity nevertheless has use in that teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “there are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.” The same could be said about many similar groups that speak about us, without us in many disability communities.

Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.

I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.

Thursday, May 7, 2009

A Request From Noranne

Noranne runs a podcast for the neurodiversity community and instead of doing her rant segment, she has decided to do a Q/A segement; questions can be about Neurodiversity, Autism, or her in particular as well as about the Podcast. Please e-mail me here at SoloNightStorm@hotmail.com you can sign with your real name or your online alias.

Tuesday, May 5, 2009

Fighting for Autistic Rights in Hebrew

Chen Gershuni of the Autistic Community of Israel (ACI), the sister community in Israel of our ASAN, translated the Lantern article about Melanie, me and our ASAN chapter.
For those of you who are curious as to how certain words look when transliterated into Hebrew:
דוקטורנט - Doctorate
היסטוריה - History
בן ציון צין - Benzion Chinn
מלאני ירגו - Melanie Yergeau
אנגלית - English
אוטיסטית - Autistic
תסמונת אספרגר – Asperger syndrome

Michael Savage Banned From England

According to an article in the English newspaper, the Independent, Michael Savage has been placed on a list of sixteen people banned from entering the United Kingdom. I have never been a lover of Savage. Long before he went on his anti autism tirade he was a conservative extremist. According to Home Secretary Jacqui Smith:

I think it's important that people understand the sorts of values and sorts of standards that we have here, the fact that it's a privilege to come and the sort of things that mean you won't be welcome in this country. … Coming to this country is a privilege. If you can't live by the rules that we live by, the standards and the values that we live by, we should exclude you from this country and, what's more, now we will make public those people that we have excluded.

I would suggest that this sort of attitude should be of concern not just to people who believe in free speech in general but to people on the spectrum in particular. It means that our friends across the Atlantic have decided that there are certain “values and standards” that go beyond obeying the law and not causing physical harm to other people. How long before this gets turned not just against right wing fanatics but against people who simply do not fit in, people like us?


Monday, May 4, 2009

Notes from our 4/30 meeting

The ASAN-Central Ohio/Ohio State University chapter held its first meeting on Thursday, April 30. Those interested in joining us for future meetings, either online or face-to-face, can leave a comment here or can email us at asan.ohiostate@gmail.com for more details.

Attendance: 23 people attended altogether, at least 9 of whom were on the spectrum. There was a combination of OSU and other students (in high school and other colleges), OSU faculty and staff, parents, relatives, and other community members.



Some things we discussed:
  • We really want to take advantage of the web. We decided that we will meet once a month online and once a month in person so that we can be as accommodating/accessible as possible. (Hillary Spears, our secretary, has volunteered to come to Barnes & Noble with her laptop during the online meetings so that people who prefer communicating f2f can participate more easily.) We talked about using Skype, Windows Messenger, or IRC.

    • Gmail chat seems like a very real possibility. You can sign up for Gmail for free, and you don’t have to download anything. (Which means that it will work for Macs and PCs, etc.)

    • Melanie and Ben will work out which option seems best and will send an email to everyone with more details ASAP. Any other suggestions?

  • Our next face-to-face meeting will be at 5:45pm on Thursday, May 21 at Barnes & Noble on High St. We will hold our online meeting before then, but we've yet to determine the date/time.

  • In addition to using the this blog, Noranne suggested creating an LJ community so that multiple people can post more easily and more frequently. We have created an LJ community: http://community.livejournal.com/asancentralohio

    • We should advertise this community, especially in online venues. We have posted a link to LJ on the blog. We should also advertise on relevant listservs, and possibly other LJ communities (such as asperger, autism, ask_an_aspie, aut_grads, etc.) Any other suggestions?

  • Dylan Bias is attending the Ohio Youth Leadership Forum.

  • We think we want to do something for/on Autistic Pride Day, though we're not yet sure what. This will be our first and main talking point during our online meeting.

  • We talked about how we might combat misinformation that is spread by groups such as Autism Speaks, especially on campus. One suggestion was holding a panel discussion of some sort. We also talked about political involvement and letter writing.

  • We want to make sure that the group is not wholly Ohio State-centric but incorporates the central Ohio community broadly. This was brought up by Stephanie and Justin and was affirmed by others.

Other notes from the meeting (RE: staying connected):
  • Pat Cloppert, who is on staff at OSU, briefly talked about federal support and the combating autism act (and the problematics of the language/ideology in the very name of the act)... she offered to connect us with people;

  • Robert Meier, who directs behavioral health services for OSU health services, has been advocating for coverage reform at OSU in regards to autism, and he wants to talk with people on the spectrum to get a better sense of what supports/services are needed and desired, yet are lacking;

  • Deb Ballam, faculty and director of The Women's Place @ OSU, said that if we wanted to have a woman speaker on neurodiversity, The Women's Place might be able to contribute some funding;

  • Tom Fish, faculty at OSU's Nisonger Center, suggested connecting us (as mentors) with teenagers on the spectrum who attend a support group @ Nisonger;

  • Cindy Selfe (our faculty adviser) also mentioned that disability studies @ OSU might possibly be able to help with funding for a speaker.



The Faith of Jenny McCarthy and Her War on Science

Recently Melanie delivered a presentation at a conference on the portrayal of disabilities in literature in which she discussed the use and abuses of narrative in parents’ accounts of their children’s autism. In particular she went after Jenny McCarthy, the most public face of the autism is a disease caused by mercury laden vaccines movement. Leaving the issues of narrative to Melanie, I would like to offer my own perspective McCarthy from reading her book Mother Warriors.


I am the sort of person who makes a habit out of reading oppositional literature. One might think that this is a matter of me being very open minded. I see it as a matter of me taking a masochistic pleasure in torturing myself. This form of masochism usually takes the form of me reading Ultra Orthodox (Haredi) material. I am a deeply religious person; I just happen to be the sort of deeply religious person who is strongly opposed to religious fundamentalism, Jewish or otherwise. While religious fundamentalism is traditionally portrayed simply as conservative fanaticism, born out of an ignorance of modern values, I view religious fundamentalism as a step child of modernism. In a world in which all cultures and values are to be considered equal this cultural relativism must, by definition, apply to religious fundamentalism. For example if traditional science is simply one set of values than what is to stop religious fundamentalists coming along and advocating for their “alternative” forms of science such as creationism and intelligent design.

This past weekend I sat down to engage in a little oppositional reading of McCarthy’s Mother Warriors, which I thought would be a different sort from my usual religious fundamentalist reading. Jenny McCarthy should certainly count as a non religious fundamentalist. She is a symbol of everything that the religious right hates, a former playboy model now living, in sin so it seems, with her boyfriend Jim Carrey. I received my first heads up in the in Foreword where Dr. Francis Collins was quoted. Dr. Collins is one of the leading theistic evolutionists; he is someone who believes in God, supports evolutions and is a powerful critic of both creationism and intelligent design। Now to be fair to Dr. Collins, the quote used had nothing to do with autism and was taken out of context. I assume that, as a man of science, Dr. Collins would be horrified to find out what his words were being used for. The fact that Dr. Collins was quoted was most probably a coincidence, but it got me thinking. What came next, as I read through the book, was a torrent of religious sentiment. In between McCarthy’s constant casual cussing were her constant references to her praying and her belief in God. If I did not know better, and if the book had undergone some slight editing, might have thought this book came out of Pat Robertson’s America.

Besides for her constant praying and God talk there is something else that one might associate with religion, her war on science. Let us be very clear about this. McCarthy’s line of argument goes way beyond issues of autism; it is a direct assault on the scientific establishment as represented in this case in the form of the American Academy of Pediatrics (AAP) and the Center for Disease Control (CDC) As McCarthy sees it, these organizations are the pawns of the pharmaceutical industry, conspiring to cover up the link between vaccines and autism. Behind her stripper costume of populist anti establishment rhetoric lies something even more dangerous, a war against the scientific method. In McCarthy’s "science," mommies have a special understanding of their children that trumps that of any medical professional. A parent’s intuition that vaccines can cause autism and their noticing that something is wrong after their child is vaccinated consists of legitimate scientific proof. Furthermore if a parent starts her child out on one of the special Gluten and Casein free diets or starts one of the detoxify procedures and they begin to notice improvement than that is proof that these procedures work. Strangely enough, in one of the stories in the book, the child starts to do worse after starting one of the “healing” procedures. Of course this regression, we are told, is also part of the healing process. There is even a case in the book where a child, unfortunately dies after starting “therapy.” An honest person might at least raise the issue of whether the “therapy” was responsible, but no; this too, we are told was the result of vaccinations. Only someone schooled in the worst of religious theodicy rhetoric could come up with such a twisted response.

McCarthy's understanding of science explains her frustration at the unwillingness of the mainstream medical community to even sit down with a group such as Defeat Autism Now! (DAN!), which “recover” children from autism on a daily basis। Of course they are operating with now fixed standard of what counts as autism and what counts as significant progress. Furthermore there is no attempt to compare autistic children on their program to those who are not. These things would be necessary for the scientific method. McCarthy, though, feels that she can put aside the scientific method for simple anecdotal evidence; who is to argue with the science of a mother fighting for her child. DAN! seems to be a good stand in for the
Discovery Institute One takes the façade of science, eschewing the technical ins and outs of the scientific method and then demand to be treated as a full member of the scientific community. If the AAP does not even want to send a representative to a DAN! conference it is not because, as McCarthy thinks, they are closed minded. As when one deals with creationism and intelligent design, the moment you even acknowledge them you have lost because you have then conceded to them the claim that they are some sort of legitimate alternative to the scientific method.

There is another side to McCarthy’s faith. While she talks about God and prays a lot there is an absence of any sense of authority. One never gets the sense that there might be certain obligations, in terms of her personal life or anything else, stemming from her belief in God. Her God is simply someone to whom one can turn to for support in moments of crisis and will and confirm for her that she is right. This explains not only the absence of any formal religious structure or theology but also her willingness to stand against science. Her faith has given her the confirmation that she is the barrier of some “special” understanding, beyond the purview of any authority, scientist or otherwise. For me this is neatly captured in the end of the book where she describes herself praying to Elias, the little boy I mentioned earlier who did not make it. She asks him to be her son Evan’s guardian angel. On what authority does she pray to a dead autistic child? Prayer and belief for McCarthy are simply other ways to feel good in this universe and to confirm that she is at the center of it.

To use an analogy from evolutionary theory, McCarthy serves as a “missing link” to explain how the mental deficiencies (Scholars are still debating if this mental deficiency is caused by genetics or some childhood incident and if it is curable.) prevalent in more liberal circles in our society could have ended up on the right as well, creating our modern religious fundamentalist empowered by the mental deficiencies of both sides. It does not take any great leap of the imagination to see how a creature such as Jenny McCarthy, created by modern liberalism, could evolve to take on more of the trappings of a traditional religion, becoming a creature with the narcissistic faith in one’s own greatness to wage war against science.