Max Starkloff, who died recently at 73, was a disability rights advocate whose achievements will be celebrated for a long time. But what strikes me is the path he took to become an advocate. A C3-5 quad, he entered a nursing home at 25 against his will and came under the thumb of those who sought to control his life. It was the 1960s, the independent living movement had yet to be born, and Starkloff was a young man among elderly residents who had come there to die.

In 1992 Starkloff gave this account to New Mobility of how he coped in the nursing home: “You want to maintain your dignity, at least on the surface, and for me it was very important not to look depressed. So I’d act like this is where I wanted to be.” Having learned to mouth-paint, he turned his room into a studio. But he soon found out that his “keepers” had other ideas.

Paternalism was the mindset of the Jesuits who ran the nursing home. Because they thought a former opera star’s records and radio disturbed other residents, they confiscated them — depriving the man of his link to a life of music. And when Starkloff’s books began piling up, the Jesuits ordered him to remove them from his window shelf. He refused, saying he needed them, but when he left the room, the books disappeared. Starkloff was irate. “I told them to keep their goddamn hands off my fucking books.” Surprisingly, the books reappeared in the window. “They didn’t know quite how to handle me,” wrote Starkloff. “So I started to break more rules.”

Advocacy is often forged in the fires of discontent, a cousin to rebellion. When Starkloff was 30, he became sexually active with a woman “of questionable reputation” who visited him. When she came to pick him up for a dinner date one evening, Brother Mark intervened: “I cannot allow you to go with anybody other than your legal guardian,” he said. Starkloff went anyway, asserting his autonomy.

In 1970, still in the nursing home, he dreamed of building a multi-unit apartment complex for quads and others modeled on his pioneering vision of independent living. In 1973 he met Colleen, a physical therapist who came to work in the nursing home. Together they worked on the project, and in 1975, Starkloff left, along with Colleen, after 12 years in the  nursing home. The next day they were married.

Now free, Starkloff established Paraquad, one of the first centers for independent living in the nation. He brought the first lift-equipped buses in the nation to St. Louis, his hometown. He established the Starkloff Disability Institute to encourage businesses to hire people with disabilities. His long list of accomplishments and awards establish him as one of the leading disability rights advocates of our time (see www.starkloff.org/starkloff/staff.php).

But first, he was a prisoner. Before he could secure our rights, he had to establish his right to self-determination. It is a universal story. To fulfill our potential, we must first break free of what holds us back — whether imposed from without or within.