Access as a Right
Advocates for disabled people work toward equity amid pandemic challenges
By Emily Sauchelli
The pandemic has exposed many inequities in American life, perhaps none more stark than how disabled people must advocate for themselves to get fair access to medical care, public facilities and transportation.
Here’s a look at solutions that individuals and small organizations are undertaking.
MOTION ACTION: Audre Wirtanen and L. Tuthall, founders of Hyp-Access, which makes accessing resources easier for Sugar and others with hypermobility-related conditions. (Julia Estrada)
Just before COVID-19 upended life around the world, Leigh Sugar, a Brooklyn writer and educator who suffers from a disorder that affects her joints, connected with an organization dedicated to helping people with disabilities.
Sugar, 31, who has hypermobile Ehlers-Danlos syndrome (hEDS), joined Hyp-Access in February 2020—the month before New York City shut down. The group, whose services include helping to recommend doctors who treat the condition, provided Sugar with research and gave her the confidence to navigate the healthcare system.
“They were trying to provide me with lifestyle-relief ideas that I could access even though I did not have medical care lined up,” said Sugar. “Originally it was a lot of education, [teaching me] this is what is going on, this is why this is happening, just connecting the dots for me.”
The founders of Hyp-Access, L. Tuthall and Audre Wirtanen, hope that its services will make accessing resources easier for Sugar and others with hypermobility-related conditions.
L. Tuthall and Audre Wirtanen created a new kind of therapy technique called Hypermobile Accessible Proprioceptive Therapy (HAPT), which according to their website, “aims to redefine and integrate body sensations that are impacted by chronic pain, injury, fatigue, and system dysfunction—establishing a more supportive and responsive sense baseline that individuals can use to inform their care practices and activity choices.”
“We really grew a passion about making that [therapy] accessible to more people via research and building more of a social movement for people with disabilities,” said Tuthal. “So that it could be argued that access to therapy is a disability right.”
OPEN ACCESS: The Lachhman and Lachhman-Persad families at the New York Botanical Garden, a site spotlighted by Accessible Travel NYC. (Courtesy Lakshmee Lachhman-Persad)
As the city adjusts to a new phase of living with COVID-19, many New Yorkers are returning to institutions that were never friendly to those with disabilities to begin with.
Annie Lachhman, an artist who lives in the Bronx, has cerebral palsy and uses a wheelchair to get around.
Her sister, Lakshmee Lachhman-Persad, also in her 40s, is an inclusive marketing strategist. Inspired by Annie, she founded Accessible Travel NYC in 2018 to find destinations for those with disabilities.
“Our fears have been compounded throughout all of the years, being completely stranded because of our transportation,” said Lachman-Persad, an inclusive marketing strategist. “It creates a lot of anxiety for us.”
Unfortunately, the environment for the disabled community has only worsened, said Mariette Bates, a professor and academic director of the disability studies programs at the CUNY’s School of Professional Studies.
“Getting the kind of normal systems that people are used to back up and running has been somewhat challenging,” she said.
Bates has a stepson with an intellectual disability who lived in a community residence in the Bronx that closed after COVID-19 hit.
“They were teaching him activities of daily living and other kinds of skills,” she said. “So, he’s been missing out on that and he’s somebody who, in order to maintain functioning, needs that kind of support.
“People are losing skills,” she said.
For people with disabilities who are immunocompromised, coping with the pandemic adds another big challenge to navigating the city.
Peter Yearwood, 66, has had polio since his childhood in Belize. The Roosevelt Island resident navigates hospitals, subways and churches in a wheelchair.
“Getting inside the establishment is a hassle,” he said. “A lot of them don’t have ramps.”
So what does the post-pandemic future hold for accessibility in New York City?
Bates says many roadblocks stand in the way of progress, despite plans to address the challenges.
“Getting the kind of normal systems that people are used to back up and running have been somewhat challenging—such as Access-A-Ride and which people rely on for transportation and just access to health care,” she said.
THE MOVEMENT: A sample of Annie Lachhman’s Progressive Disability Pride artwork.