There is a saying that a person has two deaths: the first happens when they physically die, and the second takes place when they are no longer remembered.
For those close to the late disability rights advocate Jensen Caraballo, his second death won’t happen in their lifetime.
“He was tenacious. He was a jerk. He was really funny. He was really caring. He was a poet,” community advocate Jeiri Flores said. “He used to rap. He actually used to make music when we were kids. If we didn't have all these preconceived notions of what rappers would look like, he probably could have done it (professionally).”
This month marks the one-year anniversary of his death.
Caraballo pushed for the right to live independently, to have access to community supports and for direct service providers to be paid livable wages. His activism was influenced greatly by his personal experience, and he openly spoke about his life.
He was born with a rare condition called spinal muscular atrophy type 2, a genetic neuromuscular disorder.
"This disability is part of my identity,” he said in a 2020 interview with WXXI News. “It's who I am. It's how I see my life, how I see my environment."
Flores and Caraballo met in kindergarten, she said. They shared Puerto Rican roots, and both used wheelchairs.
“We met on the bus going to school, and then our families kind of blended, and we kind of grew up together,” she said. “And then our friendship just kind of continued to grow organically as we aged into grownups.”
As a teenager, she and a friend would visit Caraballo at Monroe Community Hospital, where Child Protective Services placed him when he was 15 years old.
“MCH felt like a prison to Jensen, but was like peace to us, which was such a wild like two-sided coin, right? Because we were going to visit him to get away from our homes, from whatever it was that was happening in our daily lives, and he was trying to break out of there.” Flores said. “But we were going there because we found peace there. We found peace with him.”
Caraballo described his time in the long-term care facility as regimented, and said when he didn’t follow strict rules, it would cost him his quality of life.
"If I didn't follow the structure, many times I'd either end up either staying in my bed all day or staying in my chair all night," Caraballo told WXXI News in 2020.
Caraballo lived at MCH until his early 20s. There, in 2006, he met Philippe “Flip” Polizzi who was also a younger resident. Flip uses a communication device, and the two talked using shorthand.
“Jensen was extremely patient with me. At the time, he saw how I was communicating through my guardian, and he picked it up right away,” Flip said in an email. “He started teaching other people how to communicate with me too. That meant everything because it gave me more independence and a real voice.”
After a years-long battle to get out and live on his own, Caraballo left the facility when he was 21 years old. That experience influenced his work as a peer mentor and as an advocate for direct support services and affordable accessible housing.
Flip was one of his mentees.
“To me, Jensen was not just someone I knew. He was someone who understood me without me having to explain everything. Our relationship was real, just genuine connection.," Flip said. "The way he took the time to understand, to teach, and to help others do the same shows who he was. His advocacy and work were not just words, it was something he lived."
Caraballo spoke about how his understanding of his place in the world and where he belonged evolved over time, and changed as he experienced life outside of an institutional setting. He spoke about how learning about his own civil rights showed him a path to freedom and independence.
Caraballo’s perspective also opened conversations that were generally considered taboo, Flores said, including about sexuality and disability. He was among those outspoken in advocating against assisted suicide.
“He was really vocal about what he believed in,” Flores said. “He believed that people with disabilities should be free to do whatever it is that they wanted to do when they wanted to do it.”
