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Max Starkloff obituary: advocate for disabled people and indomitable example

This article first appeared in the St. Louis Beacon, Dec. 28, 2010 - Max Starkloff's world changed forever on the night of Aug. 9, 1959, when his late-model Austin Healy Sprite convertible spun out of control and flipped on a two-lane road in rural Missouri. The accident left him a quadriplegic but not a victim.

Over the course of the next 50 years, Mr. Starkloff would emerge as a relentless, uncompromising force on behalf of disabled people. His advocacy earned him international acclaim. But many say it was his personal example that may have meant even more. Mr. Starkloff spent 12 years in a nursing facility before he was able to forge the independent life that he worked passionately to provide to so many others.

Mr. Starkloff died Mon., Dec. 27, at his home in St. Louis' Central West End. He was 73 years old. A funeral Mass will be celebrated at 10 a.m. Tuesday, Jan. 4, at St. Francis Xavier College Church at St. Louis University, 3628 Lindell Boulevard. A visitation will follow the Mass until 2:30 p.m. in the Wool Ballroom on the lower level of Busch Student Center, which is across the street from the church. Interment will be private.

Mr. Starkloff had been suffering from flu-like symptoms in recent days. His health had also been more fragile in recent years after lung surgery, which forced him to rely on a respirator attached to his wheelchair. Still, his death came as a shock to his family and friends, who considered him indomitable.

Mr. Starkloff was 21 when after attending a party with friends he lost control of his car near Defiance, Mo. He was handsome, athletic and a strapping 6'5". To that point he had been living a carefree -- and by his own account later -- a rather irresolute life.

Doctors told family members after the accident that young Max would probably live only a few days. Still, something even then about Mr. Starkloff's spirit suggested he would carry on, according to an as yet unpublished biography by St. Louisan Charles Claggett.

According to Claggett's biography, "Max remembered seeing his uncle talking with three other doctors. He saw a wood drill and felt numbness in his head. A priest was called in to give him last rites."

To which Mr. Starkloff responded: "I don't need those."

Bleak Prospects

And he was right. But the world he would enter as a quadriplegic was almost irrepressibly bleak. There were no electric wheelchairs, no touch-tone telephones, no sidewalk ramps or other public accommodations for anyone on wheels. At the time, Claggett wrote, the only public laws regarding people with disabilities were designed to discriminate, such as Chicago's Municipal Code 36-34, which forbade anyone with a deformity "to be allowed in or on the public ways or other public places in the city."

The only jobs available for disabled people were largely menial and paid far below what others received for performing similar tasks.

After spending 138 days in the hospital, Mr. Starkloff was returned to the home of his divorced mother, Hertha Starkloff, in University City. There she acted as his primary caregiver with the help of aides while working a full-time job in real estate.

Mr. Starkloff learned to use the phone and, for a time, began selling insurance and entertaining his legions of friends who would come to visit. But the home care proved too much for his mother, who was then 57. The responsibilities were draining her both physically and financially.

At the time, the federal government paid $30,000 a year for nursing home care, but nothing to families who wanted to keep their loved ones at home. So on Oct. 23, 1963 -- four years after the accident -- Hertha drove her son to St. Joseph's Hill Infirmary in Eureka, during which Mr. Starkloff remembered, "No words were spoken."

As Mr. Starkloff recalled for Claggett's biography, "This was it, the end of the road. I was going where people go to die."

But in fact, it was at St. Joseph's Hill where Mr. Starkloff found a purpose and meaning in his life, and not incidentally his wife.

The Life-altering Dream

At first, Mr. Starkloff passed the hours at St. Joseph's by creating a rich fantasy life. "I would create a family, give each member a name and how each person looked," he told Claggett. "Sometimes I would create baseball teams, memorizing imaginary players their batting statistics, wins and losses."

Later, Mr. Starkloff would use his imagination to create works of art. He met a Franciscan brother who taught him how to manipulate a paint brush, using his teeth. For the next several months, Mr. Starkloff would work in the infirmary studio for six hours a day. Mr. Starkloff's paintings were shown in exhibitions, written about in the local press and they created an income.

Even so, Mr. Starkloff chafed at his lack of independence. He remembers the bus tours that would come to St. Joseph's Hill where he would be shown off to the visitors. A Franciscan brother would bring the tour to Mr. Starkloff's room while he was lying down and invite them in to see his paintings.

Claggett wrote: "Tousling Max's hair as though he was an obedient dog, Brother Patrick would exclaim, 'Isn't it amazing? He actually holds the brush in his teeth! Considering how he paints, I think Max is pretty good,' he'd beam.

"Departing, several of the women would pause, look down at Max and say, 'Isn't it nice that you have something to occupy your time?'"

Over the years, Mr. Starkloff began to read up on and get in touch with other people with disabilities and those who were advocating on their behalf. One was Gini Laurie, who asked him point-blank, "What are you doing in a nursing home?" Laurie, who was blunt and outspoken, often would say, quadriplegics "need a pair of hands that they can direct. They do not need to be buried alive in a nursing home. They need to live their lives as they choose."

By 1970, Mr. Starkloff had given up painting and devoted himself to what he called his "life-altering dream."

"I dreamed of an apartment complex built for people with disabilities in which they could live and work," he told Claggett. "It was a utopian environment for people with disabilities where they could also be entrepreneurs. And it wouldn't just house people with disabilities. Anyone could live there." He would later name it the Para-quad project.

Mr. Starkloff began to tell his friends and family about his idea and they were all supportive. His mother put him in touch with Ted Bakewell, a real estate executive, who also provided encouragement and advice. Mr. Starkloff created a board of directors. With the help of then U.S. Rep. James Symington, he drafted a proposal for funding from the federal government for an apartment building near the Washington University Medical Center.

The application process changed the dream. The federal government would not provide funds unless the units were devoted solely to disabled tenants. That proviso would ultimately sow the seeds of the development's demise. But Mr. Starkloff and his board were able to get the project completed and opened in September 1979.

Advocates For Independent Living

In the meantime, the Paraquad concept (the hyphen was dropped shortly after Mr. Starkloff formed his board) morphed into something much more than apartments for the disabled. It encompassed independent living in all its many forms.

Independent Living Centers, or ILCs, as they came to be called, would provide disabled people with as many as 20 services, including counseling in daily living skills, recreation and socialization, employment, housing, transportation and civil rights. Mr. Starkloff's Paraquad was among of the first 10 ILCs across the nation to receive federal funding for this pioneering concept.

Working with Mr. Starkloff at Paraquad was his wife and professional partner, Colleen, whom he had met at St. Joseph Hill in 1973. Colleen Kelly, then 23, who had just started a job as a physical therapist, had a lot of ideas and a burning desire to see them work.

She immediately took to Mr. Starkloff, who she said, "had a sense of purpose." The two began to work together on Max's dream and while doing so fell in love. They married on Oct. 4, 1975, the day after Mr. Starkloff left St. Joseph Hill for the last time.

Colleen remembered their first Christmas together in their new home in the Central West End. "We had a 10-foot tall Christmas tree. And to decorate it, I stood on the arms of Max's chair while he drove me slowly around the tree." Each night as the sun set, she recalled in Claggett's biography, their living room would fill with a soft golden light.

An Uncompromising Stand

Along with providing services to disabled people, Mr. Starkloff, Colleen and Paraquad were advocates on both the local and national stages. One of the more dramatic encounters involved the Bi-State Development Agency, which in 1976 was about to replace 157 of its aging buses with new ones. Mr. Starkloff thought the new vehicles ought to be equipped with wheelchair lifts, one more step toward independent living for people with disabilities.

Bi-State argued the lifts would be prohibitively expensive and offered a Call-A-Ride service. Starkloff and others argued the service was discriminatory. Able-bodied people didn't need to make appointments to catch a bus.

Other cities were also engaged in negotiations over bus service, but St. Louis was considered a flashpoint because of Mr. Starkloff's refusal to compromise on the issue. Whenever a hearing was held, Paraquad made sure to pack the room with disabled people who would speak passionately about their needs. It made for great television.

After three years, Bi-State agreed to provide the lifts for the buses -- the first in the nation to do so -- and to continue its Call-A-Ride Service as well.

By 1979, Mr. Starkloff, just four years out of a nursing facility, was practically a household name. That fall he was honored with the St. Louis Award, bestowed annually on the city's civic lions. The award cited him "for his dedication to improving the life of the disabled community; for his concerted endeavors to raise the level of civic consciousness on behalf of the disabled ... and for the inspirational message he has made self-evident -– that each individual, despite physical impairment, can, with courage, faith and determination, lead a full and useful life and fulfill his destiny."

Starting A Family

A year later, Mr. Starkloff and Colleen took on a challenge of a more personal nature. They wanted to adopt. But one agency after another turned them down. After a home visit, a social worker told the Starkloffs, she couldn't help them and stated exactly why.

"She said it was because Max can't play ball with a child," Colleen recalled for Claggett. "She also told us that a doctor had told her that because of Max's disability, he would probably die of renal failure. Max said, 'Get her coat, sweetie, she's leaving.' He threw her out of the house."

The Starkloffs persevered and in March 1980, they adopted their first child, Meaghan. Later they would adopt Max and then Emily Johanne.

The Starkloff Disability Institute

With Paraquad up and running and his family well established, Mr. Starkloff decided he ought to begin focusing on people whose only disability was a certain kind of blindness -- employers.

In 2003, the Starkloffs founded the Starkloff Disability Institute to change attitudes among employers about people with disabilities.

The institute points out that only 21 percent of people with disabilities, ages 18-64, hold full or part-time jobs compared to 59 percent of people without disabilities. It seeks to develop what it calls "role model" companies that include disability in their diversity policies, train decision makers in disability issues and spread the message to other companies. Among St. Louis companies currently on that list are Centene Corp., Enterprise Bank and Trust, Enterprise Rent-A-Car, Maritz, Monsanto, Nestle Purina and SSM Healthcare.

David Newburger, an attorney and chief operating officer for the Starkloff Institute, said: "Max's creativity was breathtaking. First, he recognized that we needed to help people with disabilities learn to live independent, productive lives and created Paraquad to help people with disabilities learn that lesson.

"Then he recognized that we needed to help the non-disabled community learn to drop their notions of what people with disabilities cannot do and give them a chance, so they too could become productive members of society. To send that message, he created the Starkloff Disability Institute.

"Both carry on in spite of losing him, and both are driven by his inspiration."

Colleen Starkloff said many people know of Mr. Starkloff as a disability rights advocate, but she saw him in all his dimensions. "He was a great father, a great husband and a great leader," she said. "He was my soul mate, my confidant, my best friend. There was no finer man that I could have spent the last 35 years with. Now he leaves us with the charge to continue his work and never ever to give up."

Mr. Starkloff was preceded in death by his mother, Hertha, and father, Carl; his brother, Carl Jr. and his daughter, Emily Johanne. He was the grandson of Dr. Max C. Starkloff, the St. Louis city health commissioner from 1895-1933. Dr. Starkloff 's actions here during the devasting Spanish Flu epidemic of 1918 were credited with saving thousands of lives. The city's death toll was the lowest in the country.

Surviving along with his wife, Colleen, are Mr. Starkloff's son, Max (Krystalynn) Starkloff of St. Louis, and Meaghan (Mark) Breitenstein of St. Louis; a sister, Lecil (Steve) Saller of St. Louis, and four grandchildren, Maya and Talia Breitenstein, and Lilianna and Jade Starkloff.

The public is welcome at the Mass for Mr. Starkloff at 10 a.m. Tuesday, Jan. 4, at St. Francis Xavier College Church. Accomodations are being made for those with disabilities; sign language interpreters will also be on hand. Those with disabilities may use a ramped entrance from Grand Avenue to the lower level of the church and then take an elevator up to the church. People with mobility disabilities are encouraged to arrive at the church between 8:30 a.m. and 9:30 a.m. to allow time for seating. 

Guests may park in the Laclede Garage at the southwest corner of Grand Boulevard and Laclede Avenue. Parking for disabled guests is available at the open air parking lot at the northwest corner of Grand and Laclede.

Memorials may be made to the Starkloff Disability Institute, Suite 500, 133 South 11th Street, St. Louis, MO 63102. Donations can also be made online to www.starkloff.org.

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