Saturday, December 15, 2007

My 20th Birthday

Today it my 20th Birthday.

20 years ago in Charlottetown Queen Elizabeth Hospital where I born and live in Glen Valley in a cabin with Mom, Dad and older brother.

Today it was snow all day and -10 degrees and windy.

I got presents, Asics GEL Nimbus 9 shoes and Firefry reflective laces and money and Wii game "Game Party". The 7 games included shuffle board, trivia, darts, air hockey, hoop shoot, pong toss and saucer ball. The shuffle board are my favorite.

Ben carry 2 pizzas and garlic fingers from Pizza Delight for supper.

The 20th Birthday Cake are made of sign of running. It marble cake.

I not a teenage anymore.

I have a good day.

Thursday, December 13, 2007

NYU Ransom Notes Ads: Public Outrage

Sometimes, something so important is going on in the autistic community that it is worth repeating. Usually I post it, briefly, over in my Tumblr "just jypsy" (over in the sidebar). Sometimes, like now, I will feel compelled to put it here and make sure it's seen by as many people as possible.

Below I have posted, with permission, a re-publication of a post from Whose Planet Is It Anyway, accompanied by a poster from Asperger Square 8.

Please consider signing the online petition urging NYU to end this offensive campaign.


EDIT: Please read right to the bottom of this post to read of our eventual victory; NYU's Child Study Center has pulled the plug on this horribly offensive campaign. Thanx to all of you who signed the online petition and/or contacted those involved with the campaign.

Wednesday, December 12, 2007

NYU Ransom Notes Ads: Public Outrage

We have your ignorant and ill-conceived advertising campaign, which is a detriment to itself and society. We are making sure that when people search the Internet for information about it, they will find nothing but a deluge of furious condemnation on blogs and forums. We're also posting links everywhere to an online petition protesting the ads. If you fail to provide appropriate remediation and a prompt public apology, we will make sure you no longer have the respect of any decent people and will be driven into a life of complete isolation. Do nothing and see what happens.

— Public Outrage

Or, worded a bit more diplomatically in a joint letter from the Autistic Self-Advocacy Network and thirteen other disability rights organizations:


The following letter was mailed and hand-delivered to the NYU Child Study Center on December 11th, 2007. It is co-signed by fourteen premier disability rights organizations, including ASAN, ADAPT, TASH, ADA Watch and the National Coalition for Disability Rights, the Autism National Committee and many more. In it, we urge the Center to withdraw its offensive "Ransom Notes" advertising campaign, which stigmatizes people with disabilities and misinforms the public. As some of you have already heard from our previous communications on this topic, the advertising campaign is expected to garner 700 million impressions over the next four months, requiring us to act quickly to stop grave damage to the public perception of people with disabilities.

As several others have indicated an interest in joining our statement in response to the "Ransom Notes" advertising campaign, we are encouraging organizations to issue letters endorsing the joint statement and send them to the supporters of the "Ransom Notes" campaign, urging them to withdraw the offensive advertising. Contact information for all of the supporters of the "Ransom Notes" campaign is available
here on ASAN's website. We will also be making available in the next day or so a petition for individuals to sign to express their support for the disability community's efforts. We urge individuals and groups to indicate their support now for the joint statement of fourteen disability rights organizations on this topic directly by contacting the NYU Child Study Center by e-mail at or by phone at 212-263-6205.

Thank you so much to everyone who has already written and called to protest the "Ransom Notes" campaign over the course of the past few days and for those who will do so for as long as it takes to show that the disability community will not stand for advertising that questions the humanity of people with disabilities. We will be keeping you informed as we continue to mobilize the disability community against these hurtful and unfortunate statements. Your support is what keeps the disability community strong.

Ari Ne'eman
The Autistic Self Advocacy Network, President


Dr. Harold S. Koplewicz, M.D.
The NYU Child Study Center
577 First Avenue
New York, NY 10016

Dr. Robert Grossman, M.D.
NYU School of Medicine
IRM 229
560 First Avenue
New York NY 10016

John Osborn
President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019

Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022

To the NYU Child Study Center and the supporters of the "Ransom Notes" advertising campaign:

We, the undersigned organizations, are writing to you regarding your new ad campaign for the NYU Child Study Center: "Ransom Notes." Our organizations represent people with a wide range of disabilities, including those portrayed in your campaign, as well as family members, professionals and others whose lives are affected by disabilities. As people who live and work with disability, we cannot help but be concerned by the way your campaign depicts individuals with disabilities. By choosing to portray people on the autism spectrum as well as those living with OCD, ADHD and other disabilities as kidnapped or possessed children, you have inadvertently reinforced many of the worst stereotypes that have prevented children and adults with disabilities from gaining inclusion, equality and full access to the services and supports they require.

While the "Ransom Notes" campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as "a detriment to himself and those around him," it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger's Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.

The "Ransom Notes" campaign places a stigma on both parents and children, thus discouraging them from pursuing a diagnosis that might be helpful in gaining access to the appropriate services, supports, and educational tools. The autism spectrum should be recognized for what it is: a lifelong neurological condition – not a kidnapper that steals children in the dead of the night. The devaluation of the lives of people with disabilities has led to public policies and funding decisions that have forced thousands of people with disabilities into nursing homes and other institutions. The unintended consequences of ad campaigns like yours give legitimacy to the taking away of the civil and human rights of people with disabilities.

It is true that diagnoses of ADHD, autism, Asperger's Syndrome, and OCD often accompany great hardships for families. It is true that depression and bulimia are terrible disorders that require treatment. Yet, the way you choose to convey those messages is inappropriate and counterproductive. Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them. The recent tragic instances of violence against children and adults on the autism spectrum and with other developmental disabilities are linked to the perception that these people are less than human. We – the adults, families, professionals and others affected by these conditions - assert that nothing could be further from the truth.

We are also concerned that the negative stereotypes the "Ransom Notes" campaign depicts could make it harder for the many people with disabilities and their family members who are working to ensure that students with disabilities have the right to be included in their home schools while still receiving all necessary services. Federal law mandates that students with disabilities have the right to a "free and appropriate public education" in the "least restrictive environment."

Your advertising campaign claims that children with disabilities could be a detriment to those around them and as a result hurts the efforts of parents working to secure the opportunity for their children to be included with their peers. While we recognize and applaud the good intentions intended by this effort, we must urge you to withdraw this campaign immediately, as it threatens to harm the very people whom it seeks to benefit: people with disabilities, their families, and their supporters. In the press release announcing this campaign, the Center gave as one of its goals "eliminating the stigma of being or having a child with a psychiatric disorder". We are in full agreement with the goal of eliminating stigma against people with disabilities and their families. Yet, this campaign serves to increase that stigma rather than lessen it. We hope that you will heed our concerns and those of many other people with disabilities, family members, professionals, and countless others and end the "Ransom Notes" advertising campaign.

Please do not hesitate to contact any of the organizations listed as signatories to this letter in order to better solicit the opinions of the disability community prior to your next advertising campaign. We would be more than glad to help the Center to develop better strategies to achieve its excellent goals. The NYU Child Study Center has the potential to do enormous good for children and families affected by disability. By showing that the Center respects the views of people with disabilities, families, and professionals, you can make that aspiration a reality.


Ari Ne'eman
The Autistic Self Advocacy Network

Bob Kafka
National Organizer

Diane Autin
Executive Co-Director
Statewide Parent Advocacy Network of New Jersey

Jim Ward
ADA and the National Coalition for Disability Rights

Janette R. Vance
The Family Alliance to Stop Abuse and Neglect

Estee Klar-Wolfond
The Autism Acceptance Project

Barbara Trader, MS
Executive Director

Jim Sinclair
Autism Network International

Stephen Drake
Not Dead Yet

Stanley Soden
Director of Independent Living Services
MOCEANS Center for Independent Living

Ethan B. Ellis
Executive Director
Alliance for Disabled in Action, Inc.
President Next Step, Inc.

Phil Schwarz
Vice President
Asperger Association of New England

Sharisa Kochmeister
Autism National Committee


December 19th, 2007
Victory! The End of the Ransom Notes Campaign

Hello everyone,

I am pleased to inform you that this afternoon the NYU Child Study Center
announced that they will be ending the "Ransom Notes" ad campaign in
response to widespread public pressure from the disability community. You
can read that announcement here.

The thousands of people with disabilities, family members, professionals and
others who have written, called, e-mailed and signed our petition have been
heard. Today is a historic day for the disability community. Furthermore,
having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child
Study Center, I have obtained a commitment to pursue real dialogue in the
creation of any further ad campaign depicting individuals with disabilities.
We applaud the NYU Child Study Center for hearing the voice of the
disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the
withdrawal of this advertising campaign. Our response to this campaign
stretched continents, with e-mails, letters and phone calls coming from as
far away as Israel, Britain and Australia. The disability community acted
with a unity and decisiveness that has rarely been heard before and we are
seeing the results of our strength today. Our success sends an inescapable
message: if you wish to depict people with disabilities, you must consult us
and seek our approval. Anything less will guarantee that we will make our
voices heard. We are willing to help anyone and any group that seeks to
raise awareness of disability issues, but those efforts must be done with
us, not against us. This is a victory for inclusion, for respect and for the
strength and unity of people with disabilities across the world. It is that
message that has carried the day in our successful response to this
campaign. Furthermore, we intend to build on this progress, not only by
continuing a dialogue with the NYU Child Study Center and using this
momentum to ensure self-advocate representation at other institutions as
well, but also by building on the broad and powerful alliance that secured
the withdrawal of these ads in the first place. We are strongest when we
stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember:
"Nothing About Us, Without Us!"

Ari Ne'eman
The Autistic Self Advocacy Network, President

Saturday, December 8, 2007

Jingle Bells Run & Christmas Party

(above photo by Athena)

It was cloudy and dark and -2 degrees.

The Jingle Bells Run at Charlottetown Mall.

The 5km loop course around the Charlottetown and Sherwood.

The lights of decoration on houses.

I ran the first run use Yaktrax shoes I won in summer cause avoid slip or

The after run at Cheers Sports Bar they have chili and rolls and beer and pop.

Only 7 days until my 20th Birthday on December 15!

Seasons Greetings!

More Photos

Robert Bertolas Has Arrived!

Robert Bertolas, who we posted about in late September when his cross-Canada Generex/Jaymor Victory Tour for MS brought him to PEI, has arrived in St. John's Newfoundland. Robert ran, biked & rollerbladed 9,653 Km, from Victoria BC to St. John's NFLD to raise awareness & funds for Multiple Sclerosis. Robert's trek took almost 10 months and on November 18th, one week ahead of his target arrival date, Robert ran up to the sign welcoming him to St. John's. We've been following Robert's blog since we first met, on the highway, on the way home from the Miscouche Firefighter's 10 Miler.

Well done Robert! Remembering the thrill of Alex reaching East Point after 14 days of running across Prince Edward Island, it must have been an absolutely incredible feeling for you. Congratulations to you and your support team. I hope you have a very relaxing & peace-filled holiday season. Best wishes and good health to all of you in 2008 & beyond.

If you'd like to donate to Robert, it's not too late. Click here.
"Your generous donation will be given to the Myelin Project of Canada. Their dedicated researchers are working hard to find a cure for MS, leukodystrophies and demyelinating diseases which affects more than 2 million people world wide."

Sunday, December 2, 2007

Happy Birthday

Happy Birthday Big Brother!

Saturday, December 1, 2007

The Turkey Trot - Running in a Blizzard

"The run goes just before the Christmas Parade in Souris"

It was -3 and snowing with a wind warning and are snow squall warning.

It took 1 1/2 hour to drive there and almost 2 hours to home.

The roads are slippies and white outs.

The figure 8 course run right before the Santa Clause Parade.

It took under 25 minutes of facing headwind and blinding snow.

Marcellus Campbell from Souris who was the youngest runner complete the PEI Marathon was won the race.

Lots of Souris High kids there wearing yellow and burgundy striped shirts.

We didn't go to the Bluefin because of the weather we came home.

Official result: 13th out of 47
5K in 24 minutes, 55 seconds

2006 Turkey Trot
2005 Turkey Trot
2004 Turkey Trot

More Photos

Turkey Trot runners dash down Souris parade route