Fierce disability rights advocate Jamie Wolfe dies at age 52

Jamie Wolfe — a fierce disability rights advocate who helped pass major legislation in Delaware — died Wednesday at age 52. 

An advocate for more than 30 years, Wolfe was instrumental in helping pass laws that required Medicaid to cover certain services for Delawareans with disabilities, fellow advocates say.

Friends say Wolfe wasn't afraid to share harrowing details about her life in order for others to understand the struggles many people with a disability face on a daily basis.

She had a fun side too: Wolfe enjoyed a stiff margarita and throwing parties for friends. 

A child of the 1960s, Wolfe was born in an era when people with any type of disability were often placed in institutions and seen as less than a typical child. Wolfe and her parents rebuked that notion from the beginning. 

She was born with arthrogryposis, a condition that resulted in her being born "like a pretzel" in which her limbs and torso were twisted, her mother Sheila told The News Journal in 2006. Wolfe had no muscular development in her arms and legs and used a wheelchair.  

Wolfe's father almost beat up a doctor who told the couple their infant child would need to be placed in an institution. That was never going to happen, Sheila Wolfe said. 

And it didn't. 

Close friend and disability advocate Daniese McMullin-Powell said she and Wolfe got arrested together more than once when protesting in Washington, D.C. 

The two also slept all night outside of the Supreme Court in 1999 to make sure they had a seat in the courtroom for the Olmstead v. L.C. case. The court eventually ruled that people with disabilities have the right to live in the community, instead of an institution, if they wish.

When she was first in school, children with disabilities were segregated from other school children their age.

Following the passing of the "Education for All Handicapped Children Act" in the 1970s, Wolfe was the first student at Kent County Orthopedic School to take classes at William Henry School.

Wolfe started with one 5th grade class. By 8th grade, she was in the school full time. 

Growing up, Wolfe was told she wouldn't be able to go to college. Maybe she could be a receptionist, one medical professional told her. 

She went on to graduate from Delaware Technical & Community College, University of Delaware and Delaware State University, where she earned a master's in social work. She lived independently as an adult, receiving help through Medicaid from attendants when it came to bathing, dressing and cooking. 

Wolfe was a longtime chair of the Delaware Developmental Disabilities Council and worked at UD's Center for Disabilities Studies. She helped start the university's minor in disability studies, which is now the most popular minor on campus, said Beth Mineo, the director of the center. Wolfe also had her own consulting firm.

Mineo co-taught a senior seminar with Wolfe and recalls watching her pace back and forth in her powerchair in the lecture hall. She told students stories of how she couldn't receive health care because she physically couldn't get through a hospital's door and how she was dropped by poorly trained nurses. 

JAMIE WOLFE IN 2006:Advocate defies doctors, fights to help disabled

She was never reluctant to talk about the indignities she experienced, Mineo said. It was important for her to have people understand the issues those with disabilities face on a daily basis.

Wolfe believed this kind of knowledge could not be learned from a textbook, Mineo said. 

Dr. Rita Landgraf, former Delaware health secretary, said Wolfe's stories helped pass important legislation, like the "Medicaid Buy-In" plan about a decade ago. This legislation allows people with disabilities to work full time without losing Medicaid eligibility. 

Landgraf, who now runs UD's Partnership for Healthy Communities, recalls Wolfe regularly testifying at Legislative Hall and staying until the very end of the last day of the session, which notoriously runs into the early morning. She would then ride to her nearby Dover home in her powerchair.

"She had no fear," Landgraf said. "She was a tremendous gift and we feel like she has left us too soon."

It was important to Wolfe that people with disabilities live as independently as they would like, McMullin-Powell said. She mentored young people with disabilities on how they can advocate on their own behalf — so that they're not dependent on others to speak for them. 

"She taught people to stand up for themselves and that they need to speak out for themselves," McMullin-Powell said. 

Since Wolfe was a girl, she wanted to be acknowledged as a human being who had the same thoughts and rights as anyone else, she told The News Journal in 2006. 

"I don't want people to see me as a courageous little gimp," Wolfe said. "It's not about that. It's about getting things done."

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Contact Meredith Newman at (302) 324-2386 or mnewman@delawareonline.com and on Twitter @MereNewman.