Disability rights advocate Ellen Daly dies at 82 after long career knocking down barriers in her path, enacting change

Sophie Carson | Milwaukee Journal Sentinel

Sometimes Eileen Daly wonders which cause her mother, Ellen, would have championed if things were different.

If Ellen hadn’t become paralyzed at 26 and taken up disability rights advocacy, hadn’t become a major force in enacting state legislation and the historic Americans with Disabilities Act.

“That grit and that determination had to be used in some way because there was just so much of it,” Eileen Daly said.

But this was the path Ellen Daly’s life took. Having spent most of her years in a wheelchair, she died Dec. 14 at 82.

Daly never lamented her situation, her daughters said. She focused on no-nonsense solutions to the barriers in her way and worked tirelessly to make the lives of people with disabilities easier.

Born in Green Bay, Daly moved to Milwaukee as a child and graduated from Messmer High School in 1956. Two years later, she got married. Then she had five children in 5 ½ years.

While pregnant with her fourth — Eileen — doctors discovered she had an allergic reaction to epidurals from previous births that could’ve caused extensive damage to her spinal cord. Their solution was to sever it — purposefully paralyze her — and stop the spread of the disease.

“They just didn’t know what to do. I mean, it was 1963,” Eileen Daly said.

With a home full of toddlers and babies, the Daly family accepted their new reality. They moved furniture so that Ellen could wheel around, and she taught her young kids to clean and do laundry. A 1970 Milwaukee Journal story with the headline “Wife Handles Homemaking from Wheelchair” features a photo of Daly operating the foot pedal of her sewing machine with her hand.

“You have to accept it and the people around you must, too,” the story quotes her saying. “But you can never accept to the point where you’re happy about it.”

By the time the article was printed, Ellen Daly was more than a wife and a homemaker. She was forging a path as an advocate for the rights of people with disabilities, speaking up about the issues they faced in a world that wasn’t built for them. She and Thomas Daly, her husband, were heavily involved in the Milwaukee chapter of the National Paraplegia Foundation.

Family lore goes that the fire that fueled a long career in advocacy sparked when, sometime in the '60s, Ellen Daly called the courthouse to ask which entrance to use when she arrived for a jury duty summons, since she used a wheelchair.

The clerk told her she didn’t need to come. Disabled people weren’t fit to sit on a jury, the law dictated.

“From that day forward she was a force to be reckoned with,” Eileen Daly said.

Ellen and Thomas Daly joined the paraplegia foundation’s Milwaukee chapter and worked in various roles at the organization. By 1972, Ellen was president of the chapter, and by 1983 she was executive director of the Governor’s Committee for People with Disabilities in Madison. In the late 1980s she moved to Washington, D.C., to join the President’s Committee on Employment of People with Disabilities.

The “crown jewel” of Daly’s career, her daughter Eileen said, was helping pass the Americans with Disabilities Act of 1990, which is known for prohibiting discrimination and mandating that public spaces be accessible to those with disabilities. Daly later worked as a legislative analyst in the Department of Labor, retiring at age 69.

Daly was the behind-the-scenes strategist that allowed disability rights efforts in Wisconsin to run smoothly, her longtime colleague Jean Logan said. Logan is co-authoring a book about the state's key role in the nationwide movement.

“You had to have some people who got up and yelled and ranted and demanded change,” Logan said, “and then you had to have someone who was considered rational and thoughtful, who could really have a conversation about how to do it.”

That was Daly.

“She was really considered the heart and soul” of the movement, Logan said. “As I’m doing specific stories (for the book,) they all tie back to Ellen.”

Daly was always busy, and the work became a family affair. Her daughters remember operating a mimeograph machine in the Dalys’ Shorewood home to print the paraplegia foundation newsletters and running into buildings with tape measures to make sure hallways and bathroom stalls had been built wide enough for wheelchairs.

Public spaces in the '60s and '70s simply weren't built for people in wheelchairs, and those who were paralyzed didn’t enjoy a good quality of life. Daly wanted to change that.

“She taught us — and we learned — that the only way that you make change is by speaking up,” daughter Beth Sween said. “That you can’t be complacent. If you see an injustice, you have to speak up, you have to help.”

Daly was often called to hospitals to talk to people who were newly paralyzed, and she held training sessions to educate others about disabilities. She worked closely with paramedics to teach them how to remove crash victims from cars and secure them to stretchers without worsening spinal cord injuries, and she pushed to make curb ramps mandatory across Wisconsin — among countless other accomplishments.

“She was usually in the thick of the scrum,” Eileen Daly said. “If there was a fight to be had, she was in there.”

Despite her packed schedule and her physical limitations, her daughters say, Ellen Daly tried to make life normal for her five children. She took them camping up north, taught them to be self-reliant and inspired many of them to pursue careers helping others.

Daly always came to the girls’ basketball games, Sween remembered. But the only way into the gym for a person in a wheelchair was through the locker room. Everyone on the team knew — “Mrs. Daly’s coming through the shower,” Sween said, laughing.

Making an adjustment like that wasn’t ever more than a “slight inconvenience,” Eileen Daly said. It was just life.

Though Daly was business-like, clear-headed and assertive about her disability, a few moments of discrimination have stuck with the daughters.

They’d go to the grocery store and the clerk would look to Eileen, just a child, for payment and ignore her mother.

“Sometimes people tend to treat you as a thing,” Ellen Daly told the Milwaukee Journal in 1975. “As evidence, (she) related incidents of other people talking to their companions and not directly to them,” the story reads.

Daly endured everything life threw at her, Sween said. Thomas Daly died at age 40 from diabetes after gradually going blind, leaving Ellen a single mother with five teenagers.

And though she’d never attended college, Daly found herself writing legislation on the state and federal levels and providing expertise to lawmakers.

Daly — then a single woman and a paraplegic — moved to Madison and Washington, D.C., by herself and “never really showed any hesitation of whether or not she could do that,” Sween said.

She simply refused to allow her situation to define her life, daughter Eileen said. Strong will and determination coursed through her veins, and again and again, Ellen Daly did the opposite of what someone in her position might have been expected to do.

“She took her burden and turned it into her cause,” Eileen said, “and marched forward.”

Ellen Daly is survived by her five children: Patrick Daly, Michael Daly, John Daly, Eileen Daly and Beth Sween; her brother, Robert Dickey; her brother-in-law Patrick Kelly; as well as 13 grandchildren and three great-grandchildren.

A memorial service is set for 1 to 4 p.m. Jan. 11 at the Holiday Inn Milwaukee Riverfront, 4700 N Port Washington Road, Glendale.

Contact Sophie Carson at (414) 223-5512 or scarson@gannett.com. Follow her on Twitter at @SCarson_News.