The Man Who Wrestled Death to a Draw

Dave Frohnmayer was best known for a famous Supreme Court case, but he should be remembered for his fight against the rare genetic disease that afflicted his three daughters.

Former Oregon Attorney General Dave Frohnmayer died in his sleep March 9.  Frohnmayer’s name is written in constitutional history as the state attorney general who relentlessly fought against allowing the Free Exercise Clause to cover peyote religion. His victory in that case—Employment Division v. Smith—was widely criticized; both Congress and his own state legislature disowned the result.

With equal tenacity, he fought for the lives of his three beloved daughters, each suffering from a rare and fatal genetic disease. It’s for that struggle that he should be remembered.

Three months ago, by melancholy coincidence, I published an obituary for Al Smith, the Klamath Indian whose stubborn heroism kept the peyote-religion struggle going until a defeat at the Court until the final victory in Congress.

Both of them were my friends. As antagonists, they embody a striking, almost operatic, opposition of background, culture, and style. But each was remarkable; and each, I suspect, regarded his role in reshaping First Amendment law as among the less important achievements of a long and productive life.

For both, life was a cold and serious duel with death itself. Al fought against the deaths of whole nations of Indian people—death by official hostility (Al’s birth tribe, the Klamath, was “terminated” for a time by a government covetous of its rich forestland), by alcohol and drugs, by disease, and by despair. As a recovered alcoholic and professional counselor, he touched countless lives, and saved many, including his own.

Dave Frohnmayer fought to help his daughters, and all the other children suffering from the same genetic condition. That battle, like Al Smith’s, touched the lives of many people he hardly knew.

Dave Frohnmayer was born in 1940 in Medford, a sunny Southern Oregon community then just emerging from the latter days of the Wild West. (Dave’s father Otto used to reminisce about the early days of his law practice, when a lawyer’s most elegant accessory was the revolver in his jacket pocket.) Dave attended Harvard, won a Rhodes Scholarship to Oxford, then got a law degree from Berkeley. He went from law school to the Nixon Administration, to a teaching post at the University of Oregon Law School, to a seat in the state legislature, and then to election as Oregon Attorney General. He married another high achiever, a returned Peace Corps volunteer named Lynn Johnson, who gave birth to two daughters and a son.

Their seemingly perfect life crashed on July 5, 1983, when the Frohnmayers learned that their oldest daughter, Kirsten, had Fanconi Anemia, a recessive genetic disease so rare that neither of them had ever heard of it. Soon they learned their second daughter, Katie, had the disease as well. When Lynn became pregnant again, doctors tested the fetus and assured her that this little girl would be healthy; after Amy Frohnmayer was born, the doctors realized they had made a mistake. All three girls were affected. (Their two sons, Mark and Jon, did not have the defective gene.)

The prognosis: death as teens or in young adulthood. The likelihood: 100 percent.

Such a blow would have crushed most people, but Dave and Lynn responded with fists clenched. Two lay people, they took responsibility for the sorry state of medical knowledge. Scribbled notes, photocopied journal articles, and hasty phone calls grew into a Fanconi Anemia support group, and then into the Fanconi Anemia Research Fund, with assets of $5 million, which sponsors research into the condition and funds support for families it affects.

While this was happening, Dave Frohnmayer was re-elected attorney general twice, once with the nomination of both parties.

As attorney general, Frohnmayer argued seven Supreme Court cases and won six. The last one, against Al Smith, defines his legal legacy. Smith and a white co-worker, Galen Black, had been fired from their jobs as alcohol and drug-abuse counselors because they took part in a peyote ritual sponsored by a chapter of the Native American Church. Many scientific studies have show that NAC peyote rituals can be a powerful aid to Native people recovering from alcohol abuse; but the white-led agencies the two men worked for dismissed this ancient religion as hippie-style “drug abuse.” Smith and Black asked for unemployment compensation, but the state fought them tooth and nail. The two men won over and over in the state courts, but Frohnmayer took the case to the Supreme Court twice, and ultimately won.

History has not been kind to that decision; in the second Smith opinion, Justice Antonin Scalia gutted the Free Exercise Clause, writing that from now on, minority religions burdened, or even outlawed, by putatively “neutral” laws would have to beg legislatures for exemptions; the courts would not even listen to their pleas. That decision was repudiated by Congress not once but twice—once, for general religious-freedom issues, in the Religious Freedom Restoration act and later, specifically for peyote religion, in the American Indian Religious Freedom Act Amendments of 1994—and also by many state legislatures, including Oregon’s. Frohnmayer’s office had not asked the Court for such a draconian ruling; indeed, the Court did not seek a briefing on the issue or even hint that it was considering such a drastic change in the law. But still, at the time and afterwards, people asked, Why couldn’t Dave have just let it go?

The answer, I think, is complex. First, Frohnmayer was a stubborn man, and fighting for his daughters had made him even more so. He simply did not know how to quit. Another reason was rooted in the rise and fall of the religious commune known as Rajneeshpuram. Started by a renegade Hindu holy man in 1981, the commune, located on a 64,000-acre ranch in the eastern Oregon desert, attracted hundreds of well-educated Americans and Europeans; almost as soon as it was established, its residents began to invade and terrorize the desert community around it, dismissing all protest as an attack on religious freedom itself. Rajneeshpuram conducted the first germ warfare attack on American soil, spreading salmonella in an effort to keep anti-Rajneesh voters from the polls; it also engaged in voter fraud, illegal eavesdropping, blackmail, prostitution, poisoning, and an apparent attempt to weaponize the AIDS virus. One of its last acts was to send out a hit team to assassinate a federal prosecutor, an investigative reporter—and Attorney General Dave Frohnmayer.

After nearly a decade of dueling with this death cult, Dave Frohnmayer may have become a bit cynical about religious freedom. It was a mistake, but one that, in context, stems from something other than bigotry.

Smith was Frohnmayer’s last case. He ran for Governor in 1990. The GOP’s right wing (a precursor of today’s Tea Party) demanded that he repudiate his strong support for abortion rights. When he refused, they ran a spoiler candidate. That move siphoned off just enough votes to throw the election to a Democrat, Barbara Roberts.

Afterward, Frohnmayer became Dean of the University of Oregon Law School (in that role he hired me as a professor, and became my friend). In two years, he moved up to president of the university and served until 2009.

Like Al Smith, he left his mark on the law, on institutions, and on the lives he touched. Yet I suspect that these words in his obituary would have pleased him most:

“He is survived by ... his daughter Amy.”

Amy recently turned 28. Though her condition is closely monitored by doctors, she is healthy. Only a few years ago, that would have seemed impossible. But the research the Frohnmayer family inspired has benefited a whole generation of FA patients who are living longer and better lives. Many people are responsible for this near-miracle; but Dave and Lynn Frohnmayer must figure prominently among them.

At 74, Frohnmayer died too soon; but his was a life intensely lived. What must it have felt like to remember that he went into the ring against the Angel of Death three times for the life of one of his children?

How many humans in history can have died knowing that, in the third and final round, they wrestled the Malach HaMavet to a draw?