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Research Specialist John Abbate believes strongly in making research accessible. Working in the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab gives him a chance to put this into practice. Abbate supports research funded by the National Institute on Disability, Independent Living, and Rehabilitation Research in CROR’s Rehabilitation Research and Training Center on Home and Community-Based Services. In addition to working at CROR, Abbate is also a peer navigator at the University of Illinois at Chicago College of Applied Health Sciences where he works with people with newly-acquired disabilities.
Abbate works to improve access to research in part by leading the development of “Easy Read” pieces that help readers understand complex topics. He recently spearheaded efforts to create an Easy Read Guide to Disability Models and Person-Centeredness in HCBS. The guide includes key definitions, background and context, and is meant to help readers get the most out of the accompanying policy brief on the same topic.
“Research generally is not in the ‘easy-read’ class,” he said. “I feel like translating research into a more easily digestible format this is pretty important.”
Abbate is interested in community-based research and says that people with disabilities should be part of research teams. To that end, he is working on creating a manual outlining and explaining general operating procedures used in research to make participating in research more accessible for people with disabilities.
As a wheelchair user, Abbate approaches his work through his own lived experience. Doctors discovered a brain tumor when he was a 22-year-old junior at Indiana University. He had slipped and fallen on ice and when he went in for an evaluation, neurologists discovered the tumor which was unrelated to the fall. Abbate says before neurologists operated, no one discussed the possibility of disability with him or his family. Before the surgery, Abbate was an athlete – running track, bicycle racing and working out regularly. After the surgery, he had significant balance and neurological issues and uses a wheelchair to get around.
Abbate completed his undergraduate degree and went on to earn a master’s degree in social work from the University of Illinois at Chicago. He had previously worked with children receiving special education services.
But the more involved he became in advocacy and the independent living and disability rights movements, the more he wanted to pursue policy and research. “I saw it as a way of still being able to advocate for people with disabilities by helping to make services more person-centered and helping people live the lives they want to live,” he said.
Abbate still participates in direct advocacy a bit here and there, though not as often as he’d like. His goals for the future include further normalizing person-centeredness in research, gaining more knowledge about home and community-based services, and maybe even transitioning into working on policy at the state or national level. He said policy work, when done well, is a form of advocacy for people with disabilities. “I want to see research and policies directly benefit people, especially Medicaid policy,” he said. “That would be huge for me.”