Meet Cheryl Jacobs: a wheelchair user and scientist

During our first-ever Giving Week, we are sharing impactful stories from wheelchair users. United Spinal is proud to be a part of Cheryl Jacobs' journey to success. "As a wheelchair user, I don't know where I would be without United Spinal. They take each and every one of my concerns seriously and advocate on our behalf to ensure that we are included in this world, and we can enjoy it as much as any able-bodied person," she says.

Here is her story.

Meet Cheryl Jacobs, Ph.D. She is a wheelchair user, a sister, a daughter, and a scientist. "I have always loved science and always been a scientist," says Cheryl. She is a proud member of United Spinal Association for many reasons, including United's focus on connecting wheelchair users as subject matter experts directly to healthcare professionals.

"I am a health analyst who works on policies that promote scientific data sharing," says Cheryl. She thinks about ways to connect research participants to scientists so that information flows both ways. "Participants feel like they are more active contributors in the research they are, literally, giving their bodies to."

Cheryl spoke with students about how her education at Hope College shaped her trajectory to her current placement. She shared her experience of working with Congress to progress the goals of the scientific community for the benefit of American healthcare.

Her father passed away in 2009 from pancreatic cancer, and she put her doctorate in human genetics to work researching diseases like the one that took his life. Specifically, she studied how cancer affects black and white men differently as a postdoctoral fellow at the National Cancer Institute. "I want to understand the lifestyle factors that may have contributed to disease," she says.

Her studies of lifestyle factors and cancer led her to work in advocacy. She helped people grasp research to understand science and health better, which led to her current governmental role.

She did everything right

After her dad passed away in 2009, Cheryl wanted to honor her dad by learning how to ride a motorcycle. Her family is filled with motorcycle riders. "My dad had a motorcycle, my uncle has two motorcycles, I have another uncle that has a motorcycle, my cousins have motorcycles. We're kind of a motorcycle family," she says.

She did everything right. She took a motorcycle riding course and wore her helmet religiously. But in 2019, still a relatively new rider, she headed into a curve, hit her brakes a little too hard, and they locked up. She struck a guardrail, causing complete paralysis at T4.

"I was going too fast for the curve," she says. "You're supposed to do all this counter-steering and leaning to help control the motorcycle going in and out of turns. And I just wasn't sure of myself."

What saved her was having the right gear. "If I could do a PSA about helmets, I would. They work. My helmet was my friend," she says. "Wearing the helmet, motorcycle pants, and jacket saved me. I didn't have any scrapes or any injuries other than to my spinal cord."

Cheryl dreams of riding her motorcycle, packing all her stuff in the back, and going to an uninhabited place to hammock camp. "That was my dream. A dream deferred-not canceled. Maybe not the hammock because getting out of low places is not my thing after the spinal cord injury."

Building Community with United Spinal Association

Cheryl received the Marie Brodie-Henderson Award for her work with Eight Changes for Racial Equity (8CRE).

Cheryl is from Michigan. After rehabbing for a time there, she decided to go back to Washington, D.C., where she started outpatient rehab at National Rehabilitation Hospital. It was there that her physical therapist told her about United Spinal.

"A spinal cord injury is a blow. But what is great is I'm a community person," says Cheryl. This community spirit led her to become a member of United Spinal and take on the role of Vice President of the D.C. Chapter. "It's great to know United Spinal is out there and exists because you just feel like you're not alone. Being a member has helped me out of some dark, discouraging places. Just know that you can talk to people who get it."

Cheryl attended United Spinal's StrongWheeled Together Conference in October. "SWTCon revolutionized how I see myself as a wheelchair user and how I see myself still having the spunk that I used to have, the strong voice I used to have," she says. "The conference brought stakeholders together but put wheelchair users in the driver's seat, and you don't really see that often."

Often, healthcare professionals talk at wheelchair users, rather than with them. "This conference said that wheelchair users are the subject matter experts. People with disabilities are smart, capable people. They can organize and tell you what they want. How can you come in and fill that need?' This model needs to continue - that's how we need to do it," she says.

Attending SWTCon changed Cheryl's life. Traveling to the conference gave her the confidence to know she could do it. And sharing the experience with other chapter leaders was excellent. "It's just like, oh wow, this is United Spinal."

"I wholeheartedly urge you to donate to United Spinal. It's been life-changing for me and many other wheelchair users," she says. Please consider supporting United Spinal so we can continue helping wheelchair users like Cheryl live full, independent lives.

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