It takes a great character to make a good story. That’s what I was once told.
But what makes a great character?
My muses have always told me to find someone who is both extraordinary and ordinary.
Extraordinary in that the individual has lived a life like no one else. Fascinating.
Ordinary in that the individual is imperfect, just like us. He or she shares the same foibles and fears, hopes and aspirations that we have. We can see ourselves in that person. Compelling.
I’ve spent much of my professional career searching for people like that. They frequently are hiding in plain sight. Max Starkloff was one of them.
A decade ago, Charles E. “Charlie” Claggett, a man with greater vision than me, recognized Max Starkloff’s story was worthy of a book. Richard K. Weil, who is on the board of the St. Louis Public Radio Friends and the Starkloff Disability Institute, did too.
How the book came to be
Charlie started working on the book not long after he helped Max and Colleen jumpstart the Starkloff Disability Institute. He is currently the board chairman. Claggett’s background is in advertising. He worked for the legendary D’Arcy firm following in the footsteps of his dad, Charles Sr., who led Gardner Advertising for many years.
Charlie is an excellent wordsmith, but also a dogged researcher. By the time we met in April 2010, he had accumulated mountains of books, papers and transcripts of interviews with dozens of people in the disability rights movement. He had produced by then more than 500 pages of manuscript. Still there was much more to be done.
You can hear from Charlie Claggett Jr. and Colleen Starkloff by tuning in to St. Louis on the Air with Don Marsh at noon Dec. 1. On Dec. 2, Claggett will talk about the book at 7 p.m. in the Lee Auditorium at the Missouri History Museum, Lindell Boulevard and DeBaliviere Avenue. At 7 p.m. Dec. 4, he will be at the county library headquarters.
Those first 500 pages took the reader only to about 1980, at which point Max was 42 years old. He had 30 more years to go and Charlie had many more accomplishments to chronicle. Max died on Dec. 27, 2010.
Charlie asked me to edit the first part of the book and help research and write the last portion. Now here we are with a book about an ordinary/extraordinary man.
Look at the sidewalks
It shocks me that many of my acquaintances, pretty well read and connected to the community, had not heard of Max. For some others the name rings familiar. They remember that a car accident left him quadriplegic and that he was a do-gooder of some sort.
For them I give my elevator speech. Disabled or not, you cannot make your way down a city or suburban sidewalk without appreciating Max. You cannot ride a bus without doing the same. Max Starkloff’s work, along with that of many others, gave us curb cuts and wheel chair lifts on buses. He was a leader who helped make just about every new building and many of the old across America accessible to everyone.
Today we pretty much take all that for granted. But flashback to the 1970s. Accessibility was hardly on the public agenda. And when Max endeavored to put it there, he got an incredible amount of pushback from otherwise compassionate people who said lifts, curb cuts and retrofits to buildings would be way too expensive and get so little use.
So that’s where I start, because sidewalks, buses and changes to buildings are part of our everyday living, easy to notice and appreciate.
Not ready to die
Then we can move to something larger, though perhaps more abstract at least at first. The term of art is Independent Living. We probably can all agree today that everyone should be able to live independently insofar as it is possible. That means living in your home instead of an institution, getting married, having kids, being gainfully employed, going back and forth to work, cooking your dinner. Back in the day, many people with disabilities got none of that. And Max was one of them.
Though he was in the prime of young adulthood, brilliant and ambitious, Max spent 12 years in a nursing home with elderly men who more or less were waiting to die. This came about as a result of car accident in 1959 that left Max quadriplegic. He was 21 at the time.
Max’s mother, Hertha cared for him at her home in University City for a few years, but found it impossible to both make a living and see to Max’s needs. It is interesting to note that at that time, the government paid $30,000 a year (approximately $221,000 in today’s dollars) to keep people with disabilities in nursing homes. But it paid nothing to families who wanted to keep their loved ones at home.
Charlie recounted poignantly the long ride to the nursing home that ensued:
“On Oct. 11, 1963, Hertha drove Max to St. Joseph’s Hill in her Nash Rambler. It was a long 45 minute drive during which Max remembered ‘no words were spoken. It was not like going into the hospital for a few weeks. This was it, the end of the road. I was going to where people go to die.’”
Independence
St. Joseph’s was considered close to a state of the art facility at the time. But consider what was then state of the art. The entrance to the building wasn’t wheelchair accessible. The staff was at once overbearing and patronizing.
In Charlie’s recounting, drawn from Hertha’s diary, this is how Max and Hertha were greeted upon arrival:
“‘We haven’t had many quadriplegics stay with us,’ Brother Dismas told Hertha, not looking at Max. ‘We did have one once, and he became our pet.’ Then, looking at Max and patting him on the head, he added, ‘But you’re not going to become our pet.’”
So here is what is extraordinary. Max not only survived that sort of treatment, he triumphed over it. Within those walls and on the few occasions he was able to get out to visit with others in the disability rights movement, he forged a vision for independent living.
Along with his wife, Colleen, whom he met at St. Joseph’s Hill, he created an organization called Paraquad that advocated for people with disabilities and provided them with the services they needed to lead independent lives. In 2003, Max, Colleen and David Newburger created the Starkloff Disability Institute that helps qualified people with disabilities to get mainstream jobs by forging partnerships with employers.
‘Hey, Dad’
So that in a nutshell covers extraordinary. Even more fascinating is the ordinary. Max as a husband, a father, a guy who wants everything out of life that able-bodied people take for granted. A guy who deals with kids who misbehave, who fights with his spouse, who must cope with the unbearable grief of losing a child.
When Max and Colleen were adopting their first child, Meaghan, they would encounter social workers who believed – nothing personal of course – that a quadriplegic couldn’t possibly be a good father. They had in hand research papers that supported this. Max couldn’t, after all, play catch with a son like most dads could.
Of course, what he could do with his son Maxim was engage in the “Great Cherry Pit Spit.” As the contestant succeeded in pumping out a pit and reaching a certain mark, he would move back an inch until a winner was declared. The children remember these games like it was yesterday.
They didn’t find their dad to be particularly extraordinary. Like most kids, they misbehaved and tried to escape his wrath. This was not so easy to do, as Maxim found when Max would corner him in his wheelchair. “He would full blast me into the wall,” Maxim recalled in an interview I did with him. “You smart off. You would see his teeth grind. You were in trouble.”
Meaghan said she could recognize at an early age that people looked at her dad differently. “When we were in a store, even though I was just a little kid, people would talk to me instead of my dad,” she told me. “‘So what do you think he wants?’ they would say. And I would say, ‘I don’t know. Ask him.’”
There were a ton of advantages, too. Like getting a ride down the street by standing on the footrests of your dad’s wheelchair and having your friends get to do the same. Dad could hug, and just as important, he listened better than anyone in the whole wide world.
We do not have Emily’s memories. She died in 2008 when struck by a hit-and-run driver on Forest Park Boulevard near the hospital complex. She was just 19. If you want to understand how Max is just like you, me or any parent, read Colleen and Meaghan’s heart-rending accounts of his grief.
Work at it
Max craved ordinariness. He did not want to be considered courageous or indomitable, because that made him special. What kind of message would that send to every other person with a disability? You shouldn’t have to be special to live independently, to hold a job, to raise a family. You just had to work at it, like anybody else.
If Max had had his way this book would not be about him. He asked Charlie to write about the history of the disability rights movement. But a number of people had already done that. Max’s story had not been done and in many ways it was far more interesting because it was not just about a movement, but a human being.
An extraordinary human being who wanted to be ordinary. That’s how I will remember Max.
The book can be purchased at the Missouri History Museum Shop. You can read an excerpt and order the book online here.
Note: I am fortunate that Charlie asked me to help edit and write: "Max Starkloff and the Fight for Disability Rights," and that Weil provided the wherewithal to get it done. Donna Korando, the editor who asked for this reflection, is a friend of the Starkloff family.
