Letter to the Editor Speaks volumes for Choice!

Check out this amazing letter to the editor. Amy Lutz Co-founder of the National Council on Severe Autism and great friend of a “Full Array” hits it out of the park. The battle however continues. The New York Times never printed it, so it’s up to us to get this in as many hands as possible!

Dozens of Disability Leaders Decry Cancel Culture at the New York Times

NCSA Admin

NCSA AdminFollowAug 20 · 6 min read

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The following letter was sent to The New York Times on behalf of 75 organizations and leaders in the disability community in response to the paper’s editorial choices omitting serious issues facing those with significant intellectual and developmental disabilities.

Dear Editors:

July 26th marked the 30th anniversary of the signing of the Americans with Disabilities Act (ADA). To honor this unquestionably historic legislation, The New York Times has published over two dozen articles over the past few weeks celebrating disability. But with the exception of a brief mention in an article on caregiving, those with significant intellectual and developmental disabilities were notably absent from the Times’ coverage.

People with disabilities who win Academy and Tony awards, lobby Congress, and shape a new variant of hip-hop music absolutely deserve to be honored, as the Times did in its supplement dedicated to the ADA. But that isn’t the whole story. The whole story would include those whose profound intellectual and developmental disabilities preclude the autonomous decision-making, independent living, and competitive, minimum-wage employment that are the cornerstones of the Disability Rights movement. And it would also acknowledge that, in their zest to eliminate the specialized supports that don’t comport with this vision, advocates are doing exactly what Justice Anthony Kennedy feared would happen, when he wrote in his concurring opinion to the Olmstead decision referenced by the Times as a landmark in disability history: “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive…to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

Our community’s absence from your coverage was not for lack of trying. Several prominent voices submitted responses — either to individual pieces or to the Times’ request for contributions from the public. Not one of these was published. Some excerpts:

From John Elder Robison, autistic self-advocate and Neurodiversity scholar, the College of William and Mary; Neurodiversity Advisor, Landmark College: “In her essay [“Dear Parents: Your Child with Autism is Perfect”], Ms. Ryan writes: Your child might be verbal, nonverbal, aggressive, passive, introverted or extroverted. It doesn’t matter. It troubles me greatly to see those words published in The New York Times. I have represented the autism community before the federal government for 10 years. In that role I have talked to thousands of parents and even more autistic people. My experience has shown me how diverse the autism community is. It has also shown me something else: If your child is nonverbal, passive, or aggressive, it most certainly does matter.”

From Amy Lutz, founding board member of the National Council on Severe Autism and parent of a severely autistic son: “[Jonah] will never go to college, hold a job, see the world, or have a romantic relationship. He will always require round-the-clock supervision, because he has no safety awareness: he doesn’t look before crossing the street, despite years of instruction; and in one terrifying moment, he tried to jump off a cruise ship because he wanted to swim in the ocean… Jonah’s experience is just as important…and must not be elided from the narrative in favor of some kind of fantasy autism nirvana.”

From Lee Elizabeth Wachtel, MD, Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine: “When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.”

It is ironic that the Times has excluded the most disabled from its ADA coverage exactly as a debate about “cancel culture” has embroiled this newspaper and others. Severe intellectual and developmental disability should be a bipartisan issue — we, the undersigned, represent the broad range of the political spectrum. But because our stories don’t fit the progressive left’s disability narrative, they have been effectively cancelled — exactly by those who claim to care most about this vulnerable population. As Dr. Wachtel wrote in her submission — which you opted not to publish, even though she leads one of the most respected units in the world for treating children with developmental disabilities and dangerous behaviors — “[Cancel culture] is blatantly apparent in the world of autism and developmental disability, where if it isn’t a perfect or magnificent gift, we don’t want to hear about it, and certainly don’t want to address it or consider change, even when lives are at stake.”

We urge you to recognize that, just as disability can be empowering and elucidating, it can also be heartbreaking, isolating, terrifying, all-consuming and extremely limiting — for disabled individuals and their families. And while these stories may not be as inspiring, they desperately need to be told.

Feda Almaliti, National Council on Severe Autism (CA)
John Elder Robison, Neurodiversity scholar, the College of William and Mary; Neurodiversity Advisor, Landmark College
Daniel Torisky, Past President, Autism Society of America
Marilyn Benoit, M.D., Past President, American Academy of Child and Adolescent Psychiatrists (AACAP)
Alison Singer, Autism Science Foundation (NY)
Lee Elizabeth Wachtel, M.D., Medical Director of the Neurobehavioral Unit, Kennedy Krieger Institute (MD)
Susan Senator, author: Autism Adulthood: Insights and Creative Strategies for a Fulfilling Life (MA)
Alex Kolevzon, M.D., Director, Child and Adolescent Psychiatry, Mount Sinai Health System (NY)
David Royko, Blogger, Huffington Post
John Hirschauer, Former Fellow, National Review
Kate McSweeny, ACCSES — The Voice of Disability Service Providers (DC)
Donald J. Stedman, Ph.D., Professor and Dean Emeritus of Education, University of North Carolina at Chapel Hill (NC)
Matthew Siegel, M.D., Vice President for Medical Affairs, Autism and Developmental Disorders Service, Main Behavioral Healthcare (ME)
Jonathan Mitchell (CA)
Amy Lutz, author: We Walk: Life with Severe Autism (PA)
Manuel Casanova, M.D., Smartstate Endowed Chair in Childhood Neurotherapeutics, University of South Carolina School of Medicine (SC)
Rick Wilson, A-Team USA (WI)
Jill Escher, Escher Fund for Autism (CA)
Denise D. Resnik, First Place Global Leadership Institute (AZ)
Micki Edelsohn, Homes for Life Foundation (DE)
Gloria Satriale, Preparing Adolescents and Adults for Life (PA)
Joanne St. Amand, Association for Individuals with Intellectual Disabilities (NJ)
Rita Winkeler, Illinois League of Advocates for the Developmentally Disabled (IL)
Neera Ghaziuddin, M.D., Child and Adolescent Psychiatrist, University of Michigan (MI)
Edward Shorter, Ph.D., Jason A. Hannah Professor in the History of Medicine, University of Toronto
Jill BarkerThe DD News Blog (MI)
Mai Cleary, Oasis TLC (NJ)
Ashley Kim, Elevare Community (CA)
Michael Myers, Blue Spruce Community (CO)
Hugo Dwyer, VOR (IL)
Mark L. Olson, LTO Ventures (TX)
Lanny Edelsohn, M.D., Clinical Professor of Neurology, Sidney Kimmel Medical College of Jefferson University (PA)
Joan Kelley, Kansas Neurological Institute (KNI Parent Guardian Group) (KS)
Yuval Levental (MI)
Scott M. Mendel, Together for Choice
Darrell Pickney, Family & Friends of Care Facility Residents (AR)
Susan Jennings, KIIDS — Keeping Individuals with Intellectual Disabilities Safe (PA)
Lisa Parles, Esq., Parles Rekem (NJ)
Kory Stradinger, Sweetwater Spectrum (CA)
Alex Krem, Camping Unlimited for the Developmentally Disabled (CA)
Debra Caudy, 29 Acres (TX)
Kate Grubb, Jessa’s Place (WV)
Katharine Beals, PhD., Adjunct Professor, Autism Program, Drexel University (PA)
Shawn Humberson, Friends of Wyoming Life Resource Center (WY)
David Engels, DSI Supporters Inc. (FL)
Dirk Dhossche, M.D., Medical Director, Child Psychiatry Unit, University of Mississippi Medical Center (MS)
Stephen and Debra Wallace, Texas Families and Friends for Choice (TX)
Deb Henretta, Arizona Training Center (AZ)
Cindy Bartman, Association for Hunterdon Developmental Center (NJ)
Roy Probeyahn, Long Island Advocacy Network for the Developmentally Disabled (NY)
Robert Stacey Barker, Rusty’s Morning Star Ranch (AZ)
Susan Riggle, Living Unlimited (CA)
Clare McIntosh, New Lisbon Developmental Center Family and Friends Association (NJ)
Rebecca Japko, PART (TX)
Pamela Lockwood, Safe Haven Farms (OH)
Terry Lafleur, Pinecrest Parents Association (LA)
Martha Dwyer, Southbury Training School (CT)
Meri Krassner, NYC Fair (NY)
Carissa O’Bryant, MARVA Workshop (AR)
Jerry Horton, Point Rider (TX)
Rose van Wier Hein, Golden Heart Ranch (CA)
Deborah DeScenza, Farmsteads of New England (NH)
Janet Perrineau, Green Brook Regional Center Family and Friends Association (NJ)
C. Thomas Cook, Ability Network of Delaware (DE)
Ashton McCombs, SLS Community (AR)
Molly Nocon, Noah Homes (CA)
Mary A. Vitale, Bellefontaine Habilitation Center (MO)
Edie Nehls, Sunflower Hill (CA)
Jacqueline Folger, A-Team Nevada (NV)
Carole L. Sherman, HDC Family & Friends Association (AR)
Vivian Shudde, Brookwood Community (TX)
Tom Kashatus, White Haven Center Relatives & Friends Association (PA)
Teresa Parker, A-Team Arkansas (AR)
Tom Toronto, United Way of Bergen County (NJ)

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