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Starkloff Institute: Fighting a world that says 'You shouldn't be here'

This article first appeared in the St. Louis Beacon, Oct. 10, 2012 - “You shouldn’t be here,” she said.

The woman probably meant well. She saw a 70-something man in a wheelchair with a respirator attached, waiting for the elevator in a downtown office building. But she obviously didn’t know who she was talking to when she asked him, “What are you doing here?”

To which he answered, “Going to work.”

And she didn’t know the woman behind him, to whom she said: “He shouldn’t be working, he should be home, being taken care of.”

The man in the wheelchair was Max Starkloff, activist for the disabled, who spent his adulthood fighting attitudes such as hers. And the woman behind him was his wife, Colleen Starkloff, co-founder of the Starkloff Disability Institute -- the workplace to which they were both going that morning.

The incident at the elevator, which occurred just a few years ago, has become “office lore” in the Institute, said David J. Newburger, co-founder of the Institute and a longtime friend of the Starkloffs.

“She thought he was an invalid, that he was dying and he should be home in bed,” Newburger said. “She completely misunderstood what independence for the disabled meant.”

That incident sums up for Newburger -- as it did for Max Starkloff at the time -- why their life’s work is a continuing struggle.

From the time he founded Paraquad in 1970 to his death in December 2010, Max Starkloff worked to change public perception of people with disabilities and to counter that unthinking outburst of “You shouldn’t be here.”

Next Big Step

Today, Newburger and Colleen Starkloff are continuing with the Next Big Step, a program of the Starkloff Disability Institute to break down barriers toward employment for disabled people.

“The biggest battle is attitude,” Colleen Starkloff said in a recent interview. “We have achieved lifts on buses, curb cuts [for wheelchairs], and education laws, housing laws and the Americans With Disability Act that fight discrimination. But we’re still fighting the attitude that once you have a disability, [you lose] the ability to make decisions or function in the world.”

The Institute, in a recent progress report, says employment “is essential if people with disabilities are to participate fully in American life -- essential to economic, social and psychological well-being.” No one knew that better than Max Starkloff.

In 1970, he lived in a nursing home. He could control a motorized wheelchair with his left hand, the only limb he had been able to move since an auto accident damaged his spine when he was 21. He was intelligent and had a lot of drive. But he couldn’t dress himself or get out of bed by himself. He and his mother, Hertha Starkloff, were unable to get reliable aides to come to their home when she had to work.

At that time, even for a vigorous man in his 30s, a nursing home was his only option. Everywhere else Max was told, “You shouldn’t be here.”

So he worked to establish Paraquad, a nonprofit organization dedicated to making ordinary life accessible to disabled people.

“His first desk was one of those hospital bedside tables,” Colleen Starkloff said. “He was engaged in developing an idea to free himself and others from incarceration -- and we don’t take that word lightly. A person’s dignity and freedom are out the window when you become a resident of an institution.”

Colleen met Max in 1973 when she got a job as a physical therapist at the nursing home. On their wedding night in 1975, he moved out of the nursing home and they moved into an apartment he rented. Within four years, they opened Boulevard Apartments on Forest Park Avenue, the area’s first independent living center for people with disabilities.

The residence was an extension of the Starkloffs’ focus on independence.

“We believed we’d get out of the nursing home. It never occurred to us we wouldn’t,” she said.

Newburger nodded in agreement at her determination.

Making choices

“Max could not bathe himself, but that does not mean he wasn’t independent," Newburger said. "Independence in our world is not about physically doing for yourself. It’s about making choices for yourself.”

Newburger was a college student using a wheelchair when a social worker suggested he get to know Paraquad and its charismatic founder.

“I had polio when I was 11 months old,” he said. “My parents never considered I’d not be independent. I went to regular schools, college and law school. I had no disability consciousness, although I had a lot of disability issues.”

Getting to know Paraquad and Starkloff, “I realized so many people with disabilities didn’t have parents like mine.”

When Starkloff suggested he join the activists pushing for accessibility, “I thought, wow, what a positive thing to be involved in, and I jumped in.”

In addition to his work with the Starkloff Institute, Newburger serves as commissioner on the disabled for St. Louis, continuing the work Starkloff started, making the community accessible.

Newburger and the Starkloffs worked for years in five areas to change the lives for disabled people: health care, housing, transportation, education and jobs.

“We’ve made tremendous progress in four of those,” Newburger said. “But people with disabilities are not in the work force. That’s the Next Big Step.” He cites statistics that nearly one in five Americans is disabled. While the latest unemployment figures for Americans as a whole are down somewhat, unemployment of people with disabilities is still going up -- more than seven out of 10 are unemployed.

Starting the institute

In 2003, the Starkloffs and Newburger handed the leadership of Paraquad over to others and co-founded the Institute.

“Like Paraquad, the Institute is oriented toward helping people live independent lives,” Newburger said. “Paraquad is a service organization. It’s good. But it’s not where Max’s great strength was.”

The man who in 1977 pushed Bi-State transit agency to equip the first buses in the nation with wheelchair lifts was not content to sit back and celebrate past accomplishments. He -- and his wife and his friend -- wanted to tackle barriers to employment, and not just for people in wheelchairs, but for people with all kinds of disabilities.

The Next Big Step was an emerging concept when Max died, Newburger said.

“Now it’s our biggest focus,” he said. “We’re reaching more people, we’re growing, reaching more in the community, with cooperatives with major employers.”

The Next Big Step focuses on the “you shouldn’t be here” attitudes of employers, offering training for corporate human resources directors and connecting companies with disability service organizations.

“It’s not that employers hate people with disabilities, but they have assumptions about what they can do,” Newburger said.

He gave as an example a woman who participated in one of the Institute’s training sessions for human resources directors. She had been open to working with Paraquad. But when the Institute widened its focus to people with other disabilities, this woman argued that “blind people couldn’t see a computer screen. She had no knowledge of the technology that allows blind people to use computers.”

This was an easy misconception to remedy, he said: “We can have Rehabilitation Services for the Blind come in” and show the employer simple techniques as well as technology for adapting the workplace.

Colleen Starkloff said, “We want employers to know they can come to us and ask questions. We promise we won’t sue.”

(In the early days of activism of Paraquad, employers might have been justified in fearing  the Starkloffs’ clout. As recently as 1995, they sued the St. Louis Zoo for not obeying the Americans With Disabilities Act. As a result, the zoo installed ramps around steps and made restrooms and the zoo train accessible.)

The Institute has made a commitment to the employers who take advantage of training classes or applicant referrals, Starkloff said.

“We’ve proved to these companies that they can trust us to give them expertise,” she said. “We can be a safe harbor for them to ask questions without getting in trouble.”

Seven companies have signed on with the Institute as “role model companies” for their commitment to removing barriers to employment of disabled people: Centene Corp., a health services company based in Clayton; Edward Jones, the brokerage firm, Enterprise Rent-a-Car; Enterprise Bank & Trust; Maritz Corp., a sales and marketing services company based in Fenton; Nestle-Purina pet care products based in St. Louis and SSM Health Care.

Michael Josias, vice president for recruting for Centene, says his company’s involvement with the Institute “has opened our eyes to the tremendous potential and possibilities that members of the disabled community can bring to our organization.”

Being comfortable 'being me'

Likewise, the Institute has helped people with disabilities with job readiness training and counseling.

“We’re finding that people who’ve come to ‘own’ their disability are more successful,” Newburger said. “We call it the ‘is’ thing. You’re not hiding it; you’re not wagging it in someone’s face; this just is me.”

Over the years, people at the Institute and Paraquad have seen interns and others with disabilities “come in not feeling ‘it’s OK to be me,’" Newburger said. With training, role models and encouragement, “they have blossomed, and have realized their potential.”

The leaders of Paraquad and the Institute are always looking for new leaders.

“One of our regular points of discussion was to bring young people into the process,” Newburger said. “Max was not in any way a prideful person. He had to be convinced that his name was a strong enough name in the community that it was important we call it the Starkloff institute. He certainly did not think he was irreplaceable.”

From the beginning, Newburger said, the founders of the Institute were focused on making it a strong, continuing institution.

“We recognized that he might not be there and I might not be there,” Newburger said. “We also knew from time to time he got sick. On all occasions but one, he got better.”

That last sickness was a bout of the flu two years ago.

“None of us were thinking, ‘Are we near the end?’ It just happened,” Newburger said.

Her husband’s death came just two years after their daughter, Emily Starkloff, was killed by a hit-and-run driver, Colleen Starkloff said.

“It shook us to our core,” she said. “Through that, we both learned to go on. Losing Max was also a shock. And I don’t want to say losing Emily prepared us for loss, but in reality, it did.”

Emily’s death caused the Starkloffs -- including daughter Meaghan Breitenstein of Wildwood and son Max Starkloff of St. Louis -- to draw together.

“My children and I have learned to hold together and go on like anybody else,” Starkloff said. “We’ve learned that loss is part of living.”