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February 15th
2021 News Archive
2020 News Archive
2019 News Archive
2018 News Archive
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Wednesday February 15, 2022

News Report

New York State Now Has a
Chief Disability Officer

On Monday February 14th New York Governor Kathy Hochul named Kimberly T. Hill as the first Director of the Office of the Advocate for People With Disabilities. This new office will have three enumerated responsibilities: (1) to coordinate the implementation of the Americans with Disabilities Act, (2) ensure that state programs do not discriminate against and are accessible to persons with disabilities, and (3) ensure that state programs provide services to individuals with disabilities in the most integrated setting appropriate to their needs.

The Advocate for People With Disabilities was a position originally created nearly 40 years ago in an executive order by, then Governor, Mario Cuomo. Under the administration of his son, former Governor Andrew Cuomo, the Office of Advocate was moved around and its power diluted into other executive advisory offices.

What Governor Hochul did on Monday was sign legislation that makes the Office of Advocate for People With Disabilities a part of the executive branch with specific powers and responsibilities. In addition to the those listed above, the Chief Disability Advocate will be the Chair-Person of the “Most Integrated Setting Coordinating Council.” The members of this council include the commissioners of: the Department of Health, Department of Transportation, Department of Education, the Office for People With Developmental Disabilities, the Office of Children and Family Services, the Office of Addiction Services as well as others.

Governor Hochul shaking hans with Kimberly Hill
Picture from the Albany Times Union

As the person filling this position, Kim Hill can point to her long experience working in government and as an advocate for issues of importance to people with physical, developmental and sensory disabilities. She “started working for the state as a writer for the Assembly’s Communication and Information Services Department.”

As the Director of the N.Y.S. Assembly Task Force, Hill helped develop the MISCC (Most Integrated Setting Coordinating Council) that she will Chair in her new position. She also worked with Assembly members to “pass bills related to the state’s Medicaid Buy-In program and the Nursing [Home] Transition and Diversion waiver. program.“

Both of these bills are beneficial to people with disabilities because The Medicaid Buy-in “offers Medicaid coverage to people with disabilities who are working and earning more than the allowable limits for regular Medicaid,” The Nursing Home Transition Diversion waiver program helps Medicaid-eligible people with physical disabilities and seniors live in a community-based setting, rather than nursing homes.

At the signing ceremony announcing the creation of the Office of Advocate for People With Disabilities, Hill said “I’m really really excited. I hope New York becomes a leader in everything in improving the lives of people with disabilities, I hope [New York] can become a model,” Kimberly Hill assumes her position on April 1st.

To see a visdeo of Governor Hochul's announcement:
Watch this Youtube Video

Jason DaSilva’s NOVA Documentary on MS

The PBS science series NOVA will broadcast a documentary on multiple sclerosis (MS) on Wednesday February 23rd, 2022 at 9pm Eastern. The thirty minute short documentary was created by Emmy Award winning filmmaker Jason DaSilva and will focus on primary progressive multiple sclerosis (PPMS), a form of the disease whose symptoms steadily increase. As a person with PPMS, DaSilva is in a unique position to make this informational presentation through the lens of his own story.

MS is a disorder that causes destruction of the myelin coating that surrounds and protects nerve fibers. According to the National MS Society website, there are between 400,000 and one million Americans currently living with MS. Approximately one in six people with MS have the more severe PPMS variety. Symptoms for this progressive form of MS will typically appear in adults between the ages of 30 and 50 and there is currently no cure. Jason DaSilva’s MS appeared when he was 25 but he wasn’t diagnosed until he was 26.

Head shot of Jason 			DaSilva
Jason DaSilva

The two-hour NOVA special airing on February 23rd will include a 90 minute feature film entitled “Augmented,” “the dramatic personal journey of Hugh Herr, an MIT biophysicist working to create brain-controlled robotic limbs.” Herr, himself a double amputee as the result of frostbite from a climbing incident at the age of 17, redesigned the “primitive prosthetic legs he was given” while still a teenager. “He crafted outsize prosthetic limbs that made him an even more accomplished climber than before the accident.”

After becoming an engineer, Herr has now “devoted himself to creating advanced limbs that use electronics to mimic the body’s own systems of muscular and nervous control.” Advances in prosthetic design and surgical technique made by Herr and his colleagues seek to make “prosthetic limbs move and feel like the real thing”.

NOVA is a PBS television series that does in-depth reporting on science, medicine, technology and the natural world. It airs weekly in the New York metropolitan area on Wednesday at 9:00 pm on WNET, channel 13, the local Public Broadcasting station. NOVA has been presenting one hour documentaries and long-form mini series on established bodies of scientific knowledge and the latest technology breakthroughs for the past five decades.

Jason DaSilva is a film director, writer, and producer. He has directed more than a dozen documentaries and short films and is currently working on “When They Walk;” the final film in a trilogy focusing on his life with MS. DaSilva’s documentaries have appeared on POV, the Public Broadcasting “showcase for independent nonfiction films.”

In addition to his film work, DaSilva is a local disability rights activist and the creator of AXS Map (www.axsmap.com) an online database that allows people to rate the accessibility of public venues around the world. AXS Map works in conjunction with Google Maps and has been collecting access data from volunteer reviewers for the past ten years. There are currently more than 90,000 venues that have been rated on AXS Map.

Coming Soon:
The NYC Disability Rights Archive

Humans have always saved and preserved the objects deemed valuable, important or relevant. We do this because – on some level – we understand that knowing where we have been clarifies our direction going forward.

New York City is about to create its first formal collection of documents and primary source material that chronicles the local disability rights movement. Funding for this project was secured by disability rights advocate Jessica Murray and the archive will be housed at the College of Staten Island (CSI).

Archive shelf filled with books

This is an appropriate home for this new archive because the college was built at the site of the Willowbrook State School. Willowbrook was state funded institution that received notoriety in 1972 when it received tremendous press coverage for warehousing thousands of young people with intellectual disabilities in overcrowded, unsanitary and inhumane conditions.

The CSI library contains an “Archive & Special Collections” unit that has the Willowboork archive as well as “a number of research and training programs focused on disability.” The new Disability Rights Archive will build on this existing collection.

Do You Have Material?
The creators of this New York Disability Rights Archive are calling on individuals who have materials such as: “documents, photographs, media, and other objects” that would “preserve NYC Disability Rights history,” to contribute to the archive. Anything including: “old disability rights photos, tshirts, flyers, papers, etc” would be acceptable donations for this collection.

The disability rights movement in the United States can be traced back to the 19th century but many systemic advances grew out of the civil rights movement of the 1960s and 1970; most notably, Section 504 of the Rehabilitation Act of 1973. Civil rights actions for accessible buses and subways, employment opportunities, access to small businesses and wheelchair accessible taxi service were some of the issues New York City activists fought for. Any artifacts from the disability rights movement are welcome.

The records of these struggles are mainly in the hands of the individuals and the CSI Archive project is looking to preserve them. If you wish to read about this project, visit the webpage describing this new project at the Archive & Special Collection at the Library of the College of Staten Island. Scroll to the bottom of the page.

If you have items you want to contribute, please fill out this form with your contact information and a brief description of your donation. Finally, if you have any questions you can contact the archive Project Lead, Jessica Murray at jmurray@gradcenter.cuny.edu

Rising Star on TikTok

The BBC has a web page dedicated to stories and videos about disability rights, disability culture, disability politics, disability sports and anything else about disability. I often find things that just make me smile and this story is one of them.

Nina Tame is a mother, social worker and “TikTok Star.” I’m not a fan of social media but can understand the appeal from posts like this.

Nina Tame video link
TikTok Star Nina Tame


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