Javier Robles watched in anguish as New Jersey’s coronavirus deaths spiraled upwards in the spring of 2020.
The Rutgers University faculty member, a quadriplegic paralyzed from the chest down, could see that the pandemic was taking a disproportionate toll on marginalized communities, including people with disabilities. Frightening scenes were emerging nationwide in which people—ill, isolated, and in some cases unable to make their own decisions—were dying alone.
“Every day I am watching the news and seeing people being dragged out of nursing homes in body bags,” says Robles, a teaching instructor in the Department of Kinesiology and Health in the School of Arts and Sciences. “This isn’t something where I can just sit back and say maybe things will get better.”
Robles, in fact, has never been one to just wait for things to get better.
As a Rutgers undergraduate in the 1980s, he was a self-described “pain in the neck” to university officials, forming the Handicapable student group to demand a more accessible campus. Robles went on to become an influential voice in the New Jersey disabled community. And since joining the faculty in 2013, he has been a pioneering teacher, introducing the first undergraduate course to explore the lived experience of the disabled, and currently working to develop a minor in disability studies.
So with help from a former student, Rose Greenblatt, Robles got busy last spring, assembling a statewide panel of disabled people, relatives and caregivers, and support professionals.
The New Jersey COVID-19 Disability Action Committee met from May to September, issuing a 98-page report that seeks what Robles say New Jersey has long lacked: Clear and consistent policies to protect the disabled community in a public health crisis. The very first recommendation is to “ensure that people with disabilities and their families are represented in all departments, boards and committees, and government task forces across the state”
The report has spurred action. Assemblywoman Valerie Vainieri Huttle (D-Bergen) recently proposed a package of bills that address the report’s recommendations, including the creation of a statewide Commission on People with Disabilities.
“We absolutely need a state-level commission that is created through legislation, and has some real power,” Robles said. “One of the really upsetting things during the pandemic was seeing hospital administrators and doctors making life and death decisions for people with disabilities.
“There was this total disconnect from the needs of the disabled.”
The report calls for structural changes in state health agencies, and tackles issues such as the blanket Do Not Attempt to Resuscitate policies that emerged in some hospitals as well as standard-of-care procedures that effectively de-prioritized disabled people and others from receiving ventilators and other life-saving treatment.
Robles says the report’s signature achievement was bringing together the divergent groups within the disabled community and finding common ground.
We should get our students prepared for whatever comes before them in life.
“A lot of people came in warily, but after a few meetings they were on board,” Robles said. “They saw the need for a unified voice. They were scared about what was going on, just like I was scared.”
Greenblatt, who helped coordinate and compile the report, agreed.
“What is so groundbreaking about this effort is how it’s breaking down the silos in the disability community,” says Greenblatt, a 2017 graduate of the School of Environmental and Biological Sciences, and an exercise science major. “Hopefully, this will set the stage for clearer structures that will support people with disabilities, not separate them into different groups all competing for the same pot of funding.”
That Robles was able to navigate the thicket of competing agendas to develop a major reform effort should not come as a surprise. He has spent a good part of his life discovering possibilities in the face of daunting odds.
He grew up in a financially struggling family that moved frequently between Newark and Elizabeth. He was 16 when he fell from a tree at Branch Brook Park, suffering a spinal cord injury. His doctors told him that he would never regain any strength, never have children, and would live off Social Security.
Instead, he attended Rutgers, majoring in sociology and what is now Latino and Caribbean studies. He earned his law degree from Seton Hall Law School and served 13 years as deputy director of the state Division of Disability Services.
Robles is married with two children.
He gives a shout-out to teachers and guidance counselors at Elizabeth High School.
“When I came back to school in a wheelchair, my guidance counselor said ‘Javier, you wanted to join the air force, but that’s no longer possible, so let’s work on improving your grades,’” Robles recalls. “I got through high school because of people like her.”
The Rutgers students he now teaches are aspiring physicians, occupational and physical therapists, and trainers. But until they take his course—"Movement Experiences for Individuals with Disabilities”—most of them lack exposure to disabled people. Robles has students volunteer at community organizations, takes them to rehabilitation centers, and brings in guest lecturers like Sherlock Washington, a blind athlete and founder of the New Jersey Lightning beep baseball team.
Robles is currently working to develop a disabilities minor, collaborating with Jeff Friedman, an associate professor and director of the MFA dance program at the Mason Gross School of the Arts.
“I love teaching, I love being in class and interacting with students,” Robles said. “The students should be able to interact with disabled people without thinking it’s something out of this world.
“We should get our students prepared for whatever comes before them in life.”