After 11 months, 12 days, and 7 hours of not stepping outside her home, Jenna Paisley was ecstatic about her trip to one of upper Manhattan’s COVID-19 vaccination sites, which was listed online as “handicap accessible.” She had finally got an appointment at NYC Health, with the help of her grandson, and did not want to wait any longer for healthcare workers to come to her. She wheeled herself into a queue of about 40 socially distanced people, and just like everyone else, patiently awaited her turn.
When she finally reached the entrance, however, she burst into a fit of rage. In front of her were seven little steps leading down to the vaccination room. Just seven steps, but not one ramp in sight.
“Are you fucking kidding me?” Paisley shouted at no one in particular, pointedly moving her wheelchair in circles. A young volunteer ran over, apologized profusely, and asked if he could possibly lift her down. She declined emphatically, asking why the site—which was supposed to be accessible—did not have a ramp, or why they could not bring the little vaccine vial to her instead. The flustered volunteer apologized again, mumbled something about COVID safety protocols, and asked the other volunteers for advice. After about 20 minutes of disarray, Paisley gave up and stormed out.
“I don’t blame the poor kid, it’s not his fault this whole damned system is so incompetent,” she said, waiting for her Access-a-Ride car to pick her up and take her back home. “What’s the point of having legs if you can’t walk a tiny syringe ten feet up to the people who need it most?”
Jenna is one of nearly one million people in New York City who have a disability, according to the U.S. Census Bureau, and many of them are considered high-risk for contracting the coronavirus. While the city’s vaccine rollout has been praised for its wider reach and increased distribution compared to other parts of the country, for people with disabilities, immense difficulties remain.
For one, there are many different kinds of disabilities, each with unique needs that are not always sufficiently understood by public officials. The challenges faced by the city in getting disabled populations vaccinated are worse for the disabled people themselves, and can be challenging too for the organizations and staff members that care for them.
“The city has been ridiculously slow to recognize that it isn’t only in nursing and group homes that people with disabilities exist,” said Susan Dooha, Executive Director of the Center For Independence of the Disabled, New York. She explained that not only do a majority of people with disabilities live independently, but that disabilities are often compounded by other factors like race and poverty, making it more challenging to identify and cater to their needs.
“Someone with a nerve disability like multiple sclerosis may not be able to stand in line for a long time; someone with intellectual or developmental disabilities may not understand to sit still for the jab. There’s rarely adequate sites equipped with American Sign Language or audio materials for the hearing and visually impaired,” she said. “And when you consider that disabled people disproportionately live in poverty, or that no information exists specifically for disabled persons who are also Black, Latinx, or Asian, or even that some disabilities can cause other medical conditions—you get a fuller picture of how neglected this population really is.”
Dooha views the problem as a fundamental civil rights issue. “Right now, people with disabilities are inferior in New York City,” she said. “We are not seen as adults deserving or capable of having a high quality of life.” Her organization advocates for more inclusive legislation, public education, and reasonable accommodations for people with disabilities.
The Mayor’s Office for People with Disabilities does offer services to make vaccination easier, including setting up vaccine hubs with accessible entrances/exits and bathrooms, and disability coordinators are available at the sites in accordance with the Americans with Disabilities Act. Many of the vaccine sites are not owned and operated by the city—some are state-run and others are private. Jonathan Novick, the Outreach Manager at the Mayor’s Office, said that for vaccine accessibility for the sites that the city has no control over, the office—along with the Commission on Human Rights—has put together a document outlining best practices .
“From the beginning, the needs of people with disabilities have been considered as each city-run vaccine site has been set up,” said Novick. “This continues to be the case as new sites are being stood up.” However, advocates argue that many sites are still far from completely accessible, in part because there’s no real understanding of what accessibility should look like.
Meanwhile, those who are completely homebound can fill an “interest form” to have the vaccine administered in their own homes. According to Novick, more than 30,000 forms have been received by the city and placed in a queue. Each person who applies is then screened for eligibility, and only about 25% are “truly eligible and interested,” said Novick. “So far, the City has completed 70% of all in-home vaccinations in NYC—over 2,500.”
The city has also partnered with Hunter Ambulettes and Curb to offer free accessible transportation to elderly individuals and those with ambulatory, vision, intellectual, or developmental disabilities. But the limited supply and inflexibility of appointment timings has made transportation a persistent challenge.
The early days of the vaccination program were particularly difficult. “When the rollout first happened, we were fortunate to be in the prioritized group,” said Ilene Margolin, a consultant at the Jewish Board of Family and Children’s Services, the largest social services nonprofit in New York City, offering residential and non-residential programs catering to more than 1,200 people with severe mental and developmental illness. “But the way the rollout was designed, it turned out that only certain kinds of health centers were qualified to do the vaccines for our population, and we had to transport our people there. So one of our biggest challenges was just the logistics of it.”
The Jewish Board eventually paired up with specialty pharmacists who came to its residences and administered the vaccinations. “The city’s health department did a really fantastic job of connecting us to private pharmacies, who were asked to prioritize specialized populations and agencies like our own,” said Bridget McBrien, who is responsible for the vaccination response and government relations at the Jewish Board. “So instead of us trying to navigate the city and state websites, we can just schedule pharmacists to come out to work on location, which really then gets around the accessibility issues.” She added that most of the pharmacists were able to accept consent in different ways, including paperwork in Braille or American Sign Language.
However, many smaller organizations rely on private donations and volunteers to help their communities, and have had different experiences with funding and assistance from the city. Always on the lookout for more people to join their ranks, Helping Hands for the Disabled of NYC is a small group that primarily aids people who are blind and visually impaired. The group then matches volunteers with its members to help them get vaccine appointments, and to go with them to the vaccination sites, particularly at the Javitz Center, which has been completely accessible and accommodating so far.
“I’m disabled, I’m totally blind, and I started the organization way back in 1982 because there was just so much need and not enough being done for people like us,” said Alice Crespo, 68. “ I wanted to be able to do something to make it better—so we get volunteers who not only take people out to doctor’s visits and vaccine appointments, but nice, normal things like haircuts or the beach, which are just as important.”
Many of the activities and routines of people with disabilities had to come to an abrupt halt during the pandemic. In many cases, those disruptions led to severe isolation, anxiety, and worsening medical problems. At the start of the pandemic, Helping Hands’ volunteers distributed 30 bags of food per week to families in need, and also dropped by to talk and spend time with them, if both parties were comfortable with it. They also helped older blind people learn to use their computers, access Zoom, and even read out their mail to them via FaceTime. But the pandemic also meant fewer volunteers were willing to come out, and food delivery services like Fresh Direct were suddenly overburdened.
In addition to the challenges posed by getting access to vaccines, the hesitancy around receiving them is another massive barrier—for organizations working with people with disabilities and city officials alike. For minority populations within the disabled community, there can be a deep distrust, stemming from years of discrimination in healthcare. For others with severe mental illness or intellectual disabilities, the challenge is in helping them understand why getting vaccination is so important.
“It’s very powerful when a staff member who has a relationship with a resident can say ‘I got vaccinated, and you can, too,’” said Helene Lauffer, head of the adult and family residential division at the Jewish Board. “There’s no magic here—it just makes a huge difference to provide people with vaccines in spaces where people feel comfortable, reassured and safe.”