Big Man on Campus

Robert Cohen

Savannah, Georgia (Senate District 2)

Robert Cohen is a 36-year-old man with cerebral palsy and quadriplegia. He is a twin, born 2.5 months premature. Robert arrived second after his sister and during the birthing process, he was deprived of oxygen. Originally only expected to live a week, he spent two months in the hospital before being sent home and declared healthy. It wasn’t until he was a year old that his family began to suspect his CP because, while his sister was walking, he wasn’t even sitting up. Since that time, he’s had several hospitalizations and procedures, including surgery on his knees and a selective dorsal rhizotomy in 1989. 

Because of his extensive medical needs, Robert has a Medicaid waiver known as the Independent Care Waiver Program (ICWP). He is able to use this money to pay his dad to help him with in-home care. However, at 67, his father is aging to the point that Robert is starting to consider what the next phase of his life will be. He’s considered asking his sister if he can come live with her, but he’s not sure yet. Even though they are twins, Robert says they could not be more different, not just because she has no disabilities. While Robert is the quintessential people person, he says his twin is quiet and reserved. “The one place I don’t want to end up is a nursing home because I’ve heard horror stories about those places,” says Robert so fervently that he loses his breath. (Story continues below after slideshow.)

Gathered in the Savannah State University Student Union’s computer center are friends and colleagues who did not want to miss the opportunity to talk about Robert and what he means to them. Tierra Kirk, a Criminal Justice major, and Robert are somewhere between prayer warriors and best friends. The two found each other three years ago through a mutual friend and wound up going to campus Bible Study together. She’s so happy to have Robert on her side. 

Tierra has high hopes for Robert. “He’s such a caring person. I just want him to find success in everything he does. He already influences a lot of people.” Robert even pays tribute to Tierra in one of his most recent books. An accomplished author, Robert has self-published five books of poetry and essays, with titles including Inspiration: Physically Challenged but Mentally Determined and Soul of Love. He’s most well-known for Joys, Fears and Tears, which is a compilation of his life experiences in the form of poetry. As both a writer and motivational speaker, Robert is currently working to turn his writing into a website, LoveBelieveAchieve.com, which will help his work reach a broader audience. He’d like to make the website profitable and for it to become his full-time job.

If Robert had a chance to sit down and speak with legislators, he would want them to know that his life is very positive because of the ICWP. “If they take it away, my life would take a drastic turn for the worse,” he says. He reflects on the time when they hired certified nursing assistants to come in, but Robert says that, between the staffing agency and para-transport, nothing was ever running on time. He was often late for work. His dad finally spoke up about the issue to one of the staff. “You all don’t realize that when you’re this late, you make Robert miss his bus and then he’s late to work. That makes him lose hours. It reflects badly on him. That’s not ok.” 

Even as we walk around the campus, trying to keep up with the incredibly fast pace of his wheelchair, people make sure to come up and say hi. A transfer student who met Robert a year ago approaches in the food court. She wants to let us know that she met Robert at his first book event. “Robert is always happy and trying to spread positivity among the students,” she says. “He always pushes us to do better. There’s a lot of good stuff he does.” Indeed, this man is going places, and if you hitch your wagon to his star, you might just go with him.

Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey

Copyright © 2019 Georgia Council on Developmental Disabilities. All Rights Reserved.
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