By Christopher Alvarez
NYSID, NYIT students, and Spectrum Designs celebrate the winning innovation.
They won and now they celebrate! Last week, Spectrum Designs, a custom apparel shop that employs young people on the autism spectrum, hosted the Cultivating Resources for Employment with Assistive Technology (CREATE) Symposium’s winning New York Institute of Technology (NYIT) students for a small celebration. The team created a Gamified Silk Screen Cleaner invention that makes it easier for Spectrum Designs employees to clean custom apparel tools in a more sanitary and speedy manner.
Patrick Bardsley, Co-Founder & CEO of Spectrum Designs Foundation, started the ceremony with a line from a poem by Rudyard Kipling: “If you can fill the unforgiving minute / With sixty seconds’ worth of distance run,” praising the students’ work ethic in this competition.
“We are delighted and grateful that you put all your effort into this,” said Bardsley. “Making it fun, making it more efficient, it’s just a win-win for us.”
New York State Industries for the Disabled (NYSID) President and CEO Maureen O’Brien shared that the CREATE program started because when placing people into employment, they found that there was still a need for technological support to make employment achievable for certain folks.
Currently, 67% of New Yorkers with disabilities and 85% nationwide are underemployed or unemployed. That’s why NYSID has been on a mission to enhance employability for individuals with disabilities and since 2014, over 100 assistive technology inventions have been created by bright student engineers in New York to remove barriers to employment.
“If individuals with disabilities are still unemployed at 67%, we haven’t done everything that we’re supposed to do, and we’re still treating a class of people unfairly by not making it fully accessible,” said O’Brien.
As an active collaborator since 2019, Spectrum Designs Foundation finally reached victory. O’Brien calls the day “special,” reflecting that “when you come to a location and you showcase a device like that, it helps people better understand all of the other things that they do here.”
Dr. Michael Nizich, the proud teacher and project advisor who oversaw the work of his engineering students at NYIT told the design team: “You’re changing lives in that room. You’re changing lives for these students, and you’re making a better society by yourself.”
By Esme Mazzeo
Photo of Madison Ferris and Danny Gomez in “All of Me.” Credit: Monique Carboni
There’s a scene toward the end of the first act of “All of Me” in which the main character Lucy (Madison Ferris) and her mom Connie (Kyra Sedgwick) both fall while Connie is trying to help Lucy transfer from her scooter to her bed off stage.
The cheap wooden ramp that Lucy used to get over a step between her living area and bedroom had rotted and collapsed, causing the scooter to get stuck, leading to a fall as Connie tries to get Lucy off the scooter.
While lying on the floor, Connie, who has an injured back and self-medicates with wine, begs Lucy (a recent college graduate with muscular dystrophy) to do her exercises, apply for a job at Walmart, and for goodness’ sake, pray to God for help.
“If anyone deserves a miracle, it’s our family,” Connie says from the floor.
Lucy, who prefers to use alternative and augmentative communication (AAC) to talk, indicates to her mother that rather than pray or exercise or think about her future at Walmart —she’d like to lay on the floor in complete silence until her sister Jackie and brother-in-law arrive home from a suspiciously long trip to Dairy Queen to help them up.
It’s one of the saddest moments in the romantic comedy written by Laura Winters and directed by Ashley Brooke Monroe — but also a raw and honest depiction of disabled life.
Such is the magic of “All of Me,” which centers on Lucy and her love interest, Alfonso (Danny J. Gomez), who meet at the hospital after a doctor’s appointment and both use AAC.
Layers of sadness and joy exist in the story between layers of humor and tragedy all while portraying the complexity of the human condition.
Ferris said that after seeing the play, many people often tell her, “I have seen every aspect of my life in this production.”
The core message of the play is that everyone’s life is messy, so thankfully we don’t have to go through it alone.
Gomez and Ferris are proof of this. They’re breaking boundaries together as two disabled actors starring in an off-Broadway play, and Gomez reflected on the effect that sharing the stage has on the production.
“It just gives us a different type of power and command of the stage,” he said, adding that it’s often easy for the audience and actors to forget that the characters are using AAC to speak rather than their bodies.
Ferris said she feels more “comfortable” and less “isolated” with Gomez on stage and crew members who have disabilities helping make the story come to life behind the scenes.
When she meets Alfonso, Lucy is a quick-witted former jazz singer and recent college graduate forced to face the impact her progressive disability is having on her life and the lives of her loved ones, financially and otherwise.
By contrast, Alfonso has an established career and has moved to Schenectady, New York, from Manhattan to start a new job and build a fully accessible home for himself. He and his mother have had decades to acclimate to his life with paralysis and have the money to bypass the red tape involved with needing government assistance.
“All Of Me” explores the nuances of dating, working, and even having sex with a disability while simultaneously reminding the audience that Lucy is also a sister who sometimes makes mistakes and Alfonso is a son trying to temper his mother’s expectations for his life.
“It’s really important that we tell these stories that are closer to real life than what we usually see on TV and movies,” said Gomez, who is making his theatrical debut in the play. “The way that we do it is the way it should be done.”
Alfonso and Lucy’s love story reminds the audience that the mistakes you make when you’re desperate often feel empowering. And acts of love sometimes require great personal sacrifice.
Every scene serves as a reminder that even on the floor in your darkest moment, you can reach out and find a hand to hold.
And it’s a powerful moment for disability representation. Seeing a character like Lucy in a rom-com when she was younger would’ve made her feel jealous of the actor playing the part, Ferris joked. “Growing up, there’s nothing to compare my work to. So it’s both liberating and very isolating.”
“I think people are just so excited and just finally relieved to see themselves in a piece of art,” said Ferris. In an industry only just beginning to acknowledge disabled artists and stories, “All Of Me” sends a clear message to the community — every aspect of your story matters.
By Kathryn Carroll, Esq. Disability and Program Coordinator, Association on Aging in New York
May is Older Americans Month, when we celebrate the place of older adults in our communities. The federal government’s theme for 2024 is “Powered by Connection,” which “recognizes the profound impact that meaningful relationships and social connections have on our health and well-being.” Here in New York, we also celebrate Older New Yorkers Day, which will occur on May 14th this year. The New York State Office for the Aging (NYSOFA) annually helps us honor older New Yorkers from around the state for their volunteerism.
We are grateful to all older adults who donate their time, resources, and talents to the community.
Many older adults give back within the aging services provider network that supports other older adults. Aging services rely extensively on volunteers to ensure basic services are delivered, whether by area agencies on aging or by any of the more than 1,200 additional service providers. Volunteers deliver meals, provide rides, inform and counsel people on health insurance options, staff programs at older adult centers, and raise money for special events.
The Long-Term Care Ombudsman Program (LTCOP) which provides advocacy and resources for older adults and persons with disabilities who live in long-term care facilities such as nursing homes, adult homes, assisted living facilities and family-type homes relies on volunteers to be a presence at sites. In 2021, this program had 240 certified volunteers providing advocacy services. Even with volunteers regularly stepping up to fill needs, area agencies on aging must regularly ask for volunteers to perform critical work that keeps older people living at home and in the community and numerous sites are not getting the required visits from the LTCOP.
The value of volunteering and civic engagement like the above by those aged 45 and older is over $13 billion annually.
We should also remember the world of unpaid caregiving – the voluntary care and support by friends and family who make daily life possible for people with disabilities of all ages. New York has approximately 4.1 million unpaid caregivers who provide the bulk of the long-term care. If we paid unpaid caregivers at the market rate for their services, it would be $32 billion dollars per year.
The immense reliance on unpaid work to make daily life, aging-in-place, and independence possible for older adults underscores why we honor the people who do that work and advocate every day for greater investment in aging and disability services.
If you or a loved one are aged 60 older or are a caregiver and in need of services, please don’t hesitate to contact your local area agency on aging whose information you can find on the NYSOFA website.
The mission of the Association on Aging in New York is to support and enhance the capacity of New York’s local Area Agencies on Aging and to work in collaboration with the aging network to promote independence, preserve dignity, and advocate on the behalf of aging New Yorkers and their families. AgingNY wants to be a strong partner in creating a New York free of ageism and ableism. Learn about us at agingny.org, and follow us at @AgingNY on X, and Aging New York on Facebook and Instagram.
By Anna Pakman
Is disability a laughing matter? Three New York area comediennes are finding the humor in the predicaments that people with disabilities face in everyday life and sharing it with audiences worldwide.
At what she calls “weird kid boarding school,” Pamela Rae Schuller was constantly getting in trouble for being snarky and inappropriate, so she turned to comedy to channel her rambunctious energy. That spark ignited a career in stand-up and public speaking that has criss-crossed the country. A little person with Tourette Syndrome and OCD, Schuller’s jokes were first a coping mechanism but now just represent finding the funny in everyday life as someone who happens to live with disabilities. “Comedy can be such a great tool to teach and connect,” Schuller said when asked about making jokes that land with mixed-ability audiences. “Finding humor in hard stuff can be universal!”
You can find Schuller going from stage to screen in her first leading role across from fellow comedian Jessie Chin in “Wheelchair Money,” one of more than 115 films putting a disability spin on the Buddy Comedy genre in this year’s edition of the Easterseals Disability Film Challenge (EDFC). The EDFC, launched in 2013 by actor-comedian Nic Novicki, challenges teams of filmmakers to create 5-minute short films in just five days to raise awareness of disability issues and to create more opportunities for disabled talent in front of and behind the camera. At least one member of each filmmaking team has to have a disability. This requirement ensures that EDFC films are enriched by authentic lived experiences.
For her part, Pavar Snipe, an Emmy-nominated producer, comedian, writer, professor, and disability advocate, couldn’t agree more about how essential authenticity is to finding humor even in the most mundane places. “Truth is what makes things really funny,” Snipe pointed out. “Once I made the decision to talk about my specific experience with people, my own relationship with my disability to myself, my comedy really started to expand.” She continued “What makes disability funny is that people with disabilities are the best hackers of life. We know how to take the most challenging circumstances and come through them shining and laughing at the same time.”
As for what is next, Snipe is teaching newcomers to the art form how to use their lives, experiences, and relationships to find their own unique voices. She’ll be performing a solo piece and a sketch with her team WOCA (Women of Color Anonymous) at the Austin Comedy Festival in May. Starting in June, you can catch her back in NYC live at the PIT Theater performing with her Boogiemanja team “Typecast.” And if that’s not enough, keep your ears perked for Snipe’s new comedy podcast “It’s not even like that.”
A well-timed podcast or social media video can quickly put a comedian on the map. Maysoon Zayid, whose stand-up routines have had audiences worldwide in stitches, burst onto the scene with a viral TED Talk that has been viewed more than 6.5 million times. In her talk, Zayid, who lives with cerebral palsy (CP), makes light that though, like the great Jay-Z, she has 99 problems, her CP is only one of many–after all, she lives in New Jersey.
To inspire the next generation of youth growing up with disabilities, Zayid wrote “Shiny Misfits,” a graphic novel about a young disabled girl with big dreams. “There are so few disabled characters in the tween space and the ones you see are quite plainly pathetic,” Zayid said when asked about what inspired her work. “I wanted to reflect the Disco (disability community). I know we are diverse and we are complicated.”
By Jim Weisman, General Counsel, United Spinal Association
Caption: Yellow taxis on the road in New York City, USA
Since United Spinal Association and other New York City disability organizations settled a class action lawsuit with the Taxi and Limousine Commission (TLC) over a decade ago to make at least 50% of their yellow taxis wheelchair accessible, a series of Commissioners have attempted to implement, modify, undermine, and now, knowingly violate the settlement agreement.
After fighting accessible taxis all the way to the tail end of his 12 years in office, Mayor Bloomberg agreed to make half of New York’s fleet of yellow cabs accessible by 2020. Remember: both Mayor Bloomberg and Mayor de Blasio ratified the agreement. Presumably, they had both checked with the TLC to make sure it was implementable. In any event, both mayors signed off.
TLC experts, together with Mayor Bloomberg, parroted the false claim that wheelchair users threatened the viability of the taxi industry. As a result, the TLC was busy protecting yellow cabs from our movement, while rideshare companies were the ones actually decimating the taxi industry.
The TLC let it happen. Medallion owners saw medallion values plummet. Many yellow cabs bearing medallions are no longer on the road. But this of course is not the fault of wheelchair users. The TLC failed to protect medallion holders and the industry, and rein in the growth of the rideshares until it was too late.
TLC experts also picked the inaccessible Nissan NV200 as the winner of the Taxi of Tomorrow contest. The gas-powered vehicle had to be expensively retrofitted for accessibility after it left the factory, but before it hit the street, to comply with the settlement Agreement reached with Bloomberg-era TLC.
In 2020, disability advocates voluntarily renegotiated the settlement agreement, extending the time frame to meet 50% accessibility to 2023, a date again agreed upon by TLC experts. Despite these concessions, the TLC did not meet the terms of the agreement.
Now, the TLC is trying to find an “out,” arguing that the increase in the number of accessible rideshares and 32% accessible yellow cabs (which it refers to as “substantial compliance”) excuses its need to comply with an agreement it renegotiated only a few years ago. We need to counter their arguments with action.
No other city in the United States has as many accessible cabs as New York City. We are proud of that. Disembark at Penn Station or arrive at one of our airports in a wheelchair, and an accessible taxi ride makes the impossible possible. If you travel to other major cities in a wheelchair, it is almost impossible to travel like everyone else, even after days of planning. But there is more work to be done in NYC.
Accessible transportation should be standardized, not rare and difficult to use. The disability community gave up continuing to litigate for access to 100% of all yellow cabs and settled to gain access to at least 50%. Deputy Mayor Meera Joshi, where are you? As TLC Commissioner, your commitment to access distinguished you from your predecessors and successors, and we need your support. Wheelchair users need equal access now.
