The Largest Minority

the New Activist

Friday July 1, 2022

Disability Unite
Summer Festival 2022

The Disability Unite Festival at the Central Park Bandshell will be held on Sunday July 17th, from noon to 4:00 pm. The festival is a celebration of July’s Disability Pride Month and will commemorate the 32nd anniversary of the Americans with Disabilities Act. According to Elisabeth Axel one of the event organizers,"This year’s Festival theme is A Future Of Inclusion which envisions humanity entering a world where inclusion is embraced on every level, and highlights that the time is now to build a future where we can live the life we want." The festival will feature performances by Blessing Offor, Lachi, Gaelynn Lea, and Wheelchair Sports Camp. Additional supporting acts will engage the audience in participatory dance and activities. Artists performing at the festival were chosen by the disability community and through “Disability Unite’s Got Talent Crowd Sourcing contest.”

The Disability Unite Festival will also include two art installations on the the festival grounds around the Naumburg Bandshell. Visual artist John Bramblitt will host one art installation, interacting with art lovers and share his techniques as a blind painter and themes important to him. Another art installation is a piece co-created by community members from the intersectional disability and LGBTQ communities on Staten Island.

In addition to performances and art installations, the festival will have tables and booths where city agencies and community organizations will connect with the disability community and distribute literature.

This year’s Disability Unite Festival will be a hybrid event. Everyone from the community is invited to join, either in-person at the Central Park Naumburg Bandshell or online, where it will be live streamed at the Disability Unite Webiste; www.disabilityunite.com . ASL, CART, Audio Description will be provided for both in-person and virtual performances. Additionally, Plain Language will be provided for virtual performances. A link to register for this event on July 17th is provided below. If you have questions, email the festival organizers at: DisabilityUnite@gmail.com.

To register for the Festival:
Use this online form

The Disability Pride Parade is Back

After cancellations in 2020 and 2021, New York’s Disability Pride Parade is returning to the streets on Sunday, October 2, 2022. As pandemic restrictions ease and outdoor activities are deemed to have lower risk levels for contracting COVID-19, the parade will resume it’s regular route; down Broadway, starting at Madison Square Park and ending at Union Square. The event announcement instructs participants to gather at Madison Square Park (23rd street and Madison Avenue) at 10 am. The march will conclude at the Disability Pride Festival in and around Union Square Park which runs from 14th to 17th street, between Park Avenue and Broadway. The Festival will feature artists, entertainers, musicians, and speakers from the Disability Community and is scheduled to start at noon.

This post-pandemic iteration of the pride parade has some important changes. Moving the date from July to October was a direct reflection of community input according to event organizers. The July date was traditionally used to coincide with the anniversary of the American’s with Disabilities Act. Many in the community believe the summer heat held down attendance and the cooler Autumn weather would encourage more participants.

There is also a new management team that will be running the parade headed by Elisabeth Axel, founder of “Art Beyond Sight,” a muli-facited nonprofit that runs programs in art education for the blind, disability inclusion training at museums and federal agencies and disability rights activism. Axel has pulled together her team from organizations like 504 Democratic Club, Disability Unite, and . . .

The event announcement also mentions the first disability march in 1993 and the historic exposé and closing of Willowbrook in 1987. It is not clear if these will be themes of the event. For more information, the October 2nd 2022 Disability Pride Parade flier has contact email address and phone numbers, and is posted below.

To View the Disability Pride Parade Flier:
Click Here

Disability Rights Archive
Kick Off Event – All are Invited

This event, being held on July 26th will begin at 5:30 and will be open to all who wish to attend via Zoom. The link to attend is posted below and can be activated at the appropriate date and time.

The Archive will be housed at the College of Staten Island, a branch of the City University. The college was selected because it is on the site of the Willowbrook State School, notorious for its treatment of its residents with intellectual disabilities. The Archive is in the process of developing a website but the College of Staten Island Library, Archives and Special Collections describes its commitment to the project.

If you have or know about material that might be relevant to this collection, you are encouraged to fill out this form with your contact information and a brief description of the material.

If you wish to attend the archive “Kick-Off” event, use this Zoom link at the proper date and time
https://us02web.zoom.us/meeting/register/tZYtdemgpzouGdAkM_NwnG0vzw0LLEluTSJw

Expansion to Savings Accounts for PWDs . . .
. . . Maybe

These accounts give qualified individuals who have a disability a way to save money, tax-free, for a variety of disability expenses such as housing, food, transportation, assistive technology and more. Individuals with disabilities and their families, can contribute to these accounts without effecting eligibility to programs like Medicaid, SSI and SNAP (food stamps).

ABLE accounts can be opened by people who were “disabled” before their 26th birthday. The Senate Finance Committee is proposing to raise the age of account eligible people to 46. United Spinal, reported that the Finance Committee was going to amend this eligibility increase to a larger “retirement” bill called the “EARN Act.” A check of the amendments to this bill did confirm that the ABLE Age Adjustment Act was number 4 on the list as of June 27 (see the Amendments List link below).

If ABLE accounts are of interest to you, United Spinal encourages that people contact their Senators and tell them to co-sponsor this amendment. There are currently 19 Senators listed as sponsors (see sponsors list) and New York State residents should note that Senators Schumer and Gillibrand are not signed on.

For more information about amendments go to:
the EARN Act Amendments List
To check if your Senator signed on, go to:
The Co-Sponsors List

Amazon Does It Again

In addition to its history of unsafe and abusive workplace labor practices and union busting, New York State is now getting on the band wagon by accusing the giant online vendor of discrimination against pregnant women and people with disabilities. As reported last month in Politico, the State is alleging that Amazon is in violation of the State Human rights law by forcing pregnant women and people with disabilities to take unpaid leave instead of offering reasonable working accommodations.

The announcement was made by New York State Governor with follow-up statements by the Human Rights Commission. New York City rejected Billions of dollars in tax benefits to Amazon in 2019 to entice them into building a headquarter in the City. But that hasn’t stopped Amazon from building two warehouses in the City, one in Bethpage Long Island and 3 across the Hudson River in New Jersey.

Our source for this story is:
the Politico Article

32 Years and
Still Fighting

The American’s With Disabilities Act (the ADA) was passed 32 years ago and it defined civil rights for people with disabilities and guaranteed the right to access restaurants, theaters, office buildings, and all sorts of “public accommodations.” Yet 32 years later, we are still forced to fight for these rights with a society that has, too many times, not bothered to accept and understand our community. It can be understood that a small, mom & pop business, without a company lawyer, might “mess-up” in complying with a large and sweeping set of regulations like the ADA. There are debates within the disability community about lawsuits against small businesses that failed to accommodate members of our community. Unethical lawyers and some disabled folks have created a cottage industry suing small businesses without warning in order to rake-in a few bucks, mainly for lawyers. But the ADA was written to expand rights and access, not as an opportunistic income opportunity. But what about large multi-million dollar corporations? Companies with legal departments and lawyers on retainer. Should they know the law? Do we have a right to expect important corporate entities to meet their responsibilities to accommodate people with disabilities?

Jason DaSilva with his father and son

This story is about a friend, Jason DaSilva who took his family to the Bronx Zoo. For full disclosure, Jason is an Emmy Award winning, documentary filmmaker who is the Executive Director of AXS Lab, and I am a member of his Board of Directors. AXS Lab runs several programs including AXS Map; an online, crowd sourced database for rating the accessibility of public spaces. They also run the AXS Film Fund that provides grants to “documentary filmmakers and non-fiction new media creators of color with disabilities.”

Jason has primary progressive multiple sclerosis and uses a power chair. He always travels with a personal assistant who accompanied him on this family outing to the zoo. At the ticket booth to enter the zoo, Jason asked for tickets for his father, his son and himself but was told he needed to pay for his assistant as well.

Lengthy explanations that his assistant was not there as a visitor to the zoo but as an employee attending to a client, didn’t help. Zoo supervisors and administrators were called, the rights and accommodations for disabled people were discussed and in the end, $157.80 was “donated” to the Wildlife Conservation Society for 3 adults and one child for a day at the zoo.

As a long time activist and director of “an organization dedicated to using media and technology to advocate for people with disabilities,” Jason was incensed that an important institution like the Bronx Zoo could be so insensitive to the needs of a disabled patron.

Here is an Americans with Disabilities Act lesson; The ADA does not guarantee free admission for care givers. Public “entities and accommodations” do however, need to consider free or discounted admission if a person with a disability cannot fully access their facility without assistance. As a side note to this story, there has been a successful lawsuit that forced free access to a museum for a personal assistant.

The bottom line is that a series of phone calls by Jason’s father to the Wildlife Conservation Society produced a refund, but how many disabled folks, who are not schooled in their rights get stuck paying for things when they shouldn’t have to? Without going into boring, gory specifics, Jason cannot fully access the Bronx Zoo without assistance. And while a small business might have trouble making a call on accessibility and a disabled individual’s “functional level,” large, important cultural institutions are obliged to. Staff training, company policy and just plain sensitivity must become ingrained within established organizations and hopefully it will start to filter down and become everyday behavior. Not only for the disability community but for all protected classes.

Admission to the Bronx Zoo is $41.95 for adults and $31.95 for children under 12 years. The Wildlife Conservation Society runs and manages the Bronx, Central Park and Prospect Park Zoos as well as the Coney Island Aquarium, all of which sit on NYC land. The WCS posted a gross revenue in excess of $355 million in 2020. While they do great work and clearly have significant expenses, all New Yorkers cannot afford “$42 times their number of family members” to visit a zoo. The Brooklyn Museum and MOMA both offer free admission one evening every month. The Brooklyn Botanic Garden has free weekday access in the winter months. Institutions like the Bronx Zoo must realize a responsibility to be both financially and physically accessible.

How Many Disabled Race Car
Drivers Can You Name?

Editor’s Note: As the writer of this news letter I sometimes get stories and ideas pitched to me and I get to become an editor. This story was pitched to me by a young man named Josh, through his teacher, Emily. Josh and Emily are affiliated with “Home School Adventures," an all-volunteer inclusive secular home school community-created resource that serves disabled and non-disabled students. They are located in the Twin Cities Metropolitan Area in Minnesota. Carcovers.com is the website for a company that sells polyester and polypropylene covers for cars, boats, motorcycles and a plethora of motor vehicles. They have a resource page that lists a wide range of interesting articles about cars, care care and driving.

Our friend Josh found an article on that website, that talks about the fact that disabled individuals will often compete only against other disabled individuals, for example wheelchair racing at the Paralympic Games. This segregation is understandable in many instances but the article Josh found points to a sport where disabled and non-disabled players can compete on a level playing field (literally), and that sport is car racing.

The article, entitled, Disabled Race Car Drivers – Driven to Succeed, highlights the fact that sports car drivers compete on equal footing regardless of their disability, or lack there of, and the article goes on to list 10 professional and amateur drivers. It was an interesting read and I thank Josh and Emily for the story pitch.

Our source for this Article is:
A story on the Resources Page of the "Car Covers" website

Wednesday February 15, 2022

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.

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.

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).

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.

TikTok Star Nina Tame