Photograph courtesy of Wendi Fitzgerald
Max Starkloff liked to call himself an “average Joe.”
He was a loving husband, a proud father and grandfather, a regular guy who went to work every day to support his family. The fact that he lived in a wheelchair for more than half a century was, to him, no reason to regard him as better or worse than anyone else.
He was just another guy.
Indeed, Max was all of that—if you’re willing to overlook a few details of his life. Those would include his moving mountains, leading a cultural revolution, helping thousands rebuild their lives, inspiring countless thousands more as a role model, and changing the world. Among those who could answer to that description, he might have been average. Maybe.
So when Max passed away December 27, it was a bit difficult to respect his wishes and remember him as being just like you and me. He really wasn’t. Max was a giant of a man. He was a hero. He was an inspiration.
But the Starkloff legacy is down-to-earth, and accessible to all. It is that for millions of Americans with disabilities—particularly thousands in St. Louis—living normal, happy lives with independence and dignity is a dream within reach.
That’s a far cry from the nightmare that Max encountered when he became disabled at age 22. That was ages ago, in 1959, when a car accident on a country road in St. Charles left him with a broken neck, permanent paralysis as a quadriplegic, and a medical forecast of a few days to live. He politely declined last rites.
After living a few years at home with his single mother, he had no choice financially but to go to the only place he could receive government support: a nursing home. It was the sort of place where disabled people were sent to die in the 1960s.
Not Max. Unable to use his hands, he learned to paint—quite well—holding the brush in his mouth. He began to make the most of his traumatic circumstances.
But he still wanted out. He had plenty of friends who visited, but it only made him wistful to know that they had “real lives” with families and jobs and the freedom to go places and do things. He yearned for normalcy. And he didn’t think he could make a living as a painter.
So he had a dream. He essentially issued his own declaration of independence.
Somehow, this bright, creative, proud young man summoned the courage of a thousand lions, dug deep into a magical reservoir of strength, and not only found his way to a better life, but also managed to bring some fellow disabled citizens along for the ride.
Max, still a nursing-home resident, established Paraquad in 1970 as one of the nation’s first centers for independent living for the disabled. Eleven years after an accident that would have sapped the will, if not the life, of a lesser man, he had a new title: He was a pioneer.
By 1973, Max had met the love of his life at the nursing home, a physical therapist named Colleen Kelly. By 1975, he had his freedom and a bride. From that point forward, it was the team of Max and Colleen Starkloff, pioneers. What a formidable team it was.
For more than three decades to follow, they achieved Max’s greatest dream: a wonderful life as a family with laughter, children, pets, work, fun, triumphs, failures, joy, and sadness.
Max had a real life. He had the life of an average Joe. He had his independence, and he certainly had his dignity.
Speaking of his accident and his disability in the video “Max and The Magic Pill,” he said he wouldn’t have it any other way. “Today, if someone offered me a magic pill—you know, a pill that could put all the pieces back together again like it never happened—I would turn it down.” (The moving video, produced for Paraquad in 1995 by KMOV-TV, can be found in seven parts on YouTube.)
Max loved his day job, in which he would build Paraquad into one of the most respected independent-living centers in America. He would become a leader in the struggle to gain rights for the disabled as a founder and the first president of the National Council on Independent Living.
Max and Colleen have been warriors—and make no mistake: The battle for those civil rights has been nothing short of a war. Sometimes the enemy has been a powerful nursing-home industry, benefiting from the status quo. More often than not, though, the real enemy has been the public’s insensitivity and misunderstanding of what disabled people want and need: independence, opportunity, dignity. The real challenge has been helping well-intended souls realize that offering pity or some other form of condescension is more hurtful to the disabled than what the nursing homes were doing.
Max gave powerful and eloquent voice to his cause—nationally and in St. Louis—and one by one, barriers fell. From the early fights to get wheelchair lifts on Bi-State buses and basic access to college campuses and other public places locally to the national battles to end discrimination in housing, transportation, and unemployment, Max was there.
Eventually, there was the greatest triumph of all, the Americans With Disabilities Act of 1990, which enacted sweeping changes for the disabled that are already taken for granted. But it didn’t happen without an epic struggle, and Max was as much a part of it as anyone in the country.
The one thing he didn’t do well was take proper credit for this and other victories. Max was selfless to a fault.
In 1982, furious over President Ronald Reagan’s proposed cuts to the national safety net—including some that would decimate the fledgling independent-center movement—Max sought media coverage. He contacted the also-fledgling Riverfront Times, but rather than focus on the threat to his own organization, he brought the paper the story of one disabled local woman who was about to fall through that safety net.
He wanted the story humanized.
I don’t know whether the ensuing cover story did much good, but one person who benefited from it was myself, because as the writer of the story, I had the truly humbling experience of meeting this powerful young fellow named Max Starkloff. I was awestruck then, and I’m awestruck to this day, by the magnitude of what he was doing and his thoroughly unwarranted humility.
In a sidebar story, titled “Paraquad: Max Starkloff’s Dream Come True,” I reported: “Starkloff, who has received numerous local honors, declines to discuss them much, but he loses his shyness when it comes to the topic of independent living.
“‘The more I got into it, the more I realized that there’s a fantastic need for independent-living services,’ Starkloff says. ‘And the role-model aspect is so important. When an individual comes through that door, it’s sometimes the very first time they’ve ever seen other disabled people going about their lives in a very normal way.’
“‘They’ll hear us talking about our activities, our social lives, our children, about having to mow the lawn this weekend—whatever—and we’ll be talking about these things in a very natural way. Well, they’ll hear this coming from other disabled people and they say, ‘If he can do it, I can do it.’’”
From that moment on, I recognized him as a role model for people who weren’t disabled, as well.
I thought of Max as a great activist all these years, until a better thought came along last month. During a eulogy at Max’s funeral, his nephew, Christian Saller, said, “My uncle has been referred to as an activist, but this is as insufficient as any label. I think a better term for his life and legacy is ‘revolutionary.’ Activists add a lot to the discussion, but revolutionaries start the conversation and exert fundamental change. My Uncle Max’s cultural revolution continues.”
Think about all of the conversations that Max started, all of the change he initiated. The disabled have housing, transportation, education, services—and hope—that weren’t dreamed of in 1959.
Yet the work is hardly done. Max and Colleen left Paraquad in 2003 to form the Starkloff Disability Institute out of their belief that so much more has to happen to achieve Max’s “average Joe” dream.
While Paraquad continues to help the disabled live within society, the institute’s mission is to help society accept the disabled. (I’m honored to serve on its board of directors, as I did previously at Paraquad.)
It’s already doing great work, with a curriculum for disabled studies at Maryville University, promotion of universal design to revolutionize housing for the disabled, and—perhaps most important—what we call the “next big step,” helping companies improve hiring practices for the disabled.
The institute was Max’s last great passion. I know he wouldn’t tolerate any eulogy of him not including a strong reminder that the work has just begun. He’d insist on letting others know about the Starkloff Disability Institute. (Visit starkloff.org for more information.) And Max would insist that he be remembered as a regular guy.
But I’m sorry, my dear friend, I cannot help you with that one. You were nothing of the kind.
You were the greatest.
SLM co-owner Ray Hartmann is a panelist on KETC Channel 9’s Donnybrook, which airs Thursdays at 7 p.m.
