The nation has fallen in love with American Sign Language (ASL) performer Justina Miles, who interpreted for singer Rihanna during this year’s Super Bowl halftime show. But more than just praise for individuals like Miles, local legislators are taking the opportunity to highlight programs that can create real change for disabled communities of color that are often left out of the conversation.
According to data collected from the 2019 American Community Survey (ACS), approximately 2.47 million people have combined hearing and vision loss, or considered DeafBlind under federal guidelines. In New York State (NYS), ACS data indicated that about 120,000 individuals reported combined vision and hearing loss, representing .61% of the state’s population.
The racial breakdown of the state’s DeafBlind ACS data shows there are about 60% white, 13% Black, 18% Hispanic, and 5% Asian. Organizers believe that there is definitely an undercount of disabled people, especially DeafBlind people of color across the state, leading to severe “underfunding” of services compared to other states.
On-the-ground information has found that there are large numbers of DeafBlind people in Rochester, New York City, Albany, and Long Island.
In NYS, Harlem’s Senator Cordell Cleare and Brooklyn’s Assemblymember Stefani Zinerman are sponsoring bills for a statewide DeafBlind co-navigator program. A co-navigator is specially trained to assist DeafBlind people with jobs, travel, school, and day-to-day activities. They often use tactile sign language in addition to ASL and Braille to help their clients communicate.
“Thanks to the organizing and awareness-raising work of the Black Deaf community and others, we have come to understand that members of the DeafBlind community who are also people of color experience double prejudice against them, in the form of racial discrimination and communication barriers,” said Zinerman, “The world has not been built for them.”
Zinerman has established an AD 56 Disability coalition in her district. She champions the idea of accessibility for all of her constituents. That includes websites that are easily navigated with text-to-speech functions, interpreters during Zoom calls and meetings, a building that people can get in and out of easily, and translating voting materials into Braille in the near future. She sponsored the assembly bill for the co-navigator program.
“I’m proud to use my position to help push for this measure that will help DeafBlind persons get the assistance they require, not as charity but as their human right,” said Zinerman.
Marc Safman, 52, a dedicated community advocate and a DeafBlind Black man living in New York City, has been leading the crusade for a fully funded statewide co-navigator program and more representation in DeafBlind healthcare. Safman had brain surgery when he was 16 and lost much of his hearing and sight throughout his life as a result. He is blind in his right eye and hard of hearing. For most of his life, he fell back on pen and paper before technological advances allowed him to use his smartphone and apps to communicate.
Safman didn’t understand why his senses were so bad and had no real insurance when he came to New York City in 1997. “When I moved to New York, I saw mostly white doctors,” he said about his struggles when he was in his 40s. “They told me there was an issue with my vision that could not be corrected, but none of them advised me to go to the Commission of the Blind and be declared legally blind in order to receive benefits.”
It was the first time he had pondered whether white and nonwhite people were treated equally when it came to accessing the healthcare system. “I know people who are DeafBlind who are white. They discuss the problems they face, but they get their accommodations,” said Safman. “I get fired.”
Many of the co-navigator programs the state has developed to date are geared toward youth with very few easy-to-navigate resources for middle-age working DeafBlind adults until they hit retirement age. The current programs also have a regional and racial disparity, said Safman, with long waiting lists and low pay for co-navigators.
Safman, at the suggestion of Commissioner to Mayor’s Office for People With Disabilities (MOPD) Commissioner Christina Curry, reached out to Cleare for help and began his advocacy journey.
Cleare said she was proud to introduce Senate Bill 2503. She said that DeafBlind co-navigator programs have been successful in other states and it is time that this “world of services” becomes open to New Yorkers.
“I believe that a DeafBlind Co-Navigator Program has the ability to change, empower, and enrich the lives of so many in New York State by assisting individuals in their everyday lives with a host of important tasks,” said Cleare in a statement. “I sincerely hope we pass the bill this year, get the program in place, and then fully fund it so it can make a manifest difference as soon as possible.”
Chris Woodfield, the associate executive director for the Helen Keller National Center, is also in favor of the bills for DeafBlind New Yorkers. He said that a statewide program would allow people to fully participate and access the communities where they live and work. It is also critical for DeafBlind people to be able to get access to environmental information, human guides, and communication facilitation, Woodfield said in a statement.
“This will liberate New York DeafBlind citizens from isolation that they experience without access to co-navigators and support service providers,” said Woodfield. “This will enable them to be able to shop, attend appointments, participate in community and cultural events, and participate in other recreational activities that would not be possible without a co-navigator or support service provider.”
Safman said the bill would also create good jobs and increase economic opportunities for DeafBlind people as well as co-navigators.
“Governor Hochul has made fighting for greater equity, equality, and opportunities for historically marginalized communities a chief priority of her administration,” said Hochul’s office.
Hochul’s office said that the state included $250,000 in her executive budget proposal for the 2023–2024 fiscal year. The funds will go toward restoring the Interagency Coordinating Council for Services to Persons who are Deaf, Blind, or Hard of Hearing in the Office of the Chief Disability Officer, established in February 2022. The chief disability officer is charged with establishing New York as a model for inclusivity, integration, and accessibility by ensuring all state policies, programs, and activities truly meet the needs of all people with disabilities, said Hochul’s office.
“The governor will review this bill if it passes both houses of the legislature,” said Hochul’s office.
Ariama C. Long is a Report for America corps member and writes about politics for the Amsterdam News. Your donation to match our RFA grant helps keep her writing stories like this one; please consider making a tax-deductible gift of any amount today by visiting https://bit.ly/amnews1.
[UPDATED Thursday, March 9]