“I Have Epilepsy and I Thank God for It”
“God of all people, you were there when the cannonball shattered the leg of St. Ignatius, shattered his dreams, and shattered what he assumed his life would be. Even in a moment of pain and uncertainty, doubt, and darkness, you spoke to Ignatius a word of peace and light. You showed him the path to you and the person he might become.”
– Prayer for the Ignatian Year (2021-2022) by the Jesuit Conference of Canada and the United States
I am a devout Catholic, educated and counseled by Jesuits at Loyola University in Los Angeles (now Loyola Marymount University), and I believe I found my purpose in life through God’s grace.
Ignatius, with six companions, started the Society of Jesus in 1540. Central to his inspiring journey—from soldier to saint—was the awful moment he was hit by cannon fire during the Battle of Pamplona in 1521. Yet on the strength of a religious conversion he found a way to inspire so many of us to fulfill our highest callings, consistent with our abilities and values and hopes.
Before 1990, people with disabilities were treated under US law the way I was treated under canon law. Rejection without recourse. People with disabilities had no rights to do things most people take for granted.
My cannonball moment changed everything for me. It landed after I graduated college, after I changed my career path from law school to the priesthood, when I went for a routine physical prior to entry into the Los Gatos seminary.
It was 17 centuries earlier that the Catholic Church fired the cannonball that upended my life. In 400, the Church amended canon law and prohibited “those who are or were epileptics either not quite in their right mind or possessed by the Evil One” from being ordained “or to exercise orders already received.”[1] I never saw it coming.
A Fateful Accident
When I woke up, as a frightened 17-year-old, I couldn’t speak. I had had a seizure.
I had been in the barn milking cows—we had nearly 300 on our farm—and the next thing I knew I was in bed. My brother had carried me to the house. The seizure stemmed from an accident the year before, when the farm pickup I was riding in turned over. The accident caused me to hit my head, which ached sorely, but I recovered and had no reminders of the crash for a year.
But after the incident in the barn, seizures came repeatedly. So, for five years, my parents and I trooped from doctor to doctor, for test after test, in search of an explanation. So far as I knew, none was forthcoming, so I stayed focused on my grades and tried to manage my seizures as best I could.
At Dos Palos High School, I was an achiever. I got outstanding grades, and I was elected student body president. At 17, then as now, I got out of bed every morning not knowing if I would have a seizure.
Whether I was distracted by my studies, my romantic life, the prospect of attending Loyola University, or by the joy-inducing possibility in 1960 that our country was on the cusp of electing a Roman Catholic president, I reconciled myself to whatever confusion or unexplained diagnostic failure prevented me from receiving a lucid medical explanation for what caused my persistent seizures.
It was obvious, of course, to every physician who examined me that I had epilepsy. But no one said so. My parents—Portuguese immigrants and faithful Catholics—believed what the Church decreed long ago. If I had epilepsy, people would think that the devil possessed me, and that God was punishing my family for something. So, my parents directed each doctor not to discuss it with me, and I never even heard it from them.
After fruitless visits to physicians’ offices, my parents forced me to see witch doctors, who anointed me with oil and burnt candles on my chest to end my seizures. But they neither “cured” me nor redeemed me spiritually in my parents’ eyes. I had gone from academic excellence to a religious embarrassment.
The seizures continued after I was admitted to Loyola, but I still earned outstanding grades. I was also named outstanding senior, and again was elected student body president. By junior year, a variety of businesses and groups told me to apply for jobs with them after I graduated. Touched by the glow of Camelot in the White House and the allure of the New Frontier, I decided that I wanted to be an attorney. Until Dallas.
I was deeply proud that a Catholic had been elected. I thought that he and the First Lady were changing the world. So, when President Kennedy, who inspired me to serve and to help others, was killed on November 22, 1963, I was devastated. After an unusually reflective Christmas break, I returned to Loyola convinced that the best way I could fulfill JFK’s vision of public service was by entering seminary and becoming a priest.
This change in direction shocked my girlfriend, who thought she knew me better, and my fraternity brothers, too. But I was elated.
The Truth is Told
“Has anybody told you that you have epilepsy?”
On my 22nd birthday, I took a physical. During the exam, Dr. John Doyle, Sr. asked me if I had headaches or passing out spells. When I told him they’d started six years earlier, he confirmed that I had epilepsy and helped me understand what it is. To his astonishment, this was the first time I had a physician—one who hadn’t been muted by the hidden hands of my parents—tell me the truth.
Following my seizure in the barn, I had bounced back, and now I was bouncing forward because I had found my purpose in life—to “preach and administer the sacraments wherever there was a hope of accomplishing the greater good,” as the Jesuits say.[2] But the truth also had shattering consequences. Beyond the diagnosis, Dr. Doyle explained that because of canon law, I could not become a priest. The Ignatian canon-ball had found its target.
This was my introduction to the world of discrimination and stigma against people with disabilities.
My doctor had to notify the legal authorities of my epilepsy. My church unrolled the welcome mat at the seminary, letting me know that I could not become a priest. The State of California took away my driver’s license. My insurer followed suit and cancelled my coverage. All the encouraging job opportunities promised to me in junior year promptly vanished when I answered “yes” to the question which appeared on every job application: “Do you have epilepsy?” No employers wanted me!
Worst of all was my parents’ immediate reaction: no son of ours has epilepsy. In rejecting the diagnosis, my parents rejected me. I was shattered.
Unable to serve, unable to work, unable to find a job, unable to open my parents’ hearts, I felt utterly alone. Abandoned by my family, by my Church, and by God. Abandoned by hope.
A Playground Revelation
I was in the grip of a deepening depression. Inside, I felt lost and without purpose; that darkness was chasing away the lights of opportunity and hope inside me. I was drinking, a lot. Every day in Los Angeles I would go to Griffith Park, sit on a hilltop, and get drunk by 2 p.m. If I was waiting for gentle words like those which saved Ignatius to save me, I’d have been disappointed. I considered suicide.
On a day when I was in especially bad shape, a group of children caught my attention playing on a merry-go-round I hadn’t noticed before. As the kids got on and off the painted horses, musically rising and falling to the calliope, a voice said to me, “You’re going to be just like those little kids. From today forward, you will never allow anyone or anything ever to stop you from doing what you want to do.” That’s when I made the decision to fight for my life, and I have not looked back since.
Hope and Politics
Thanks to a priest, a friend to me on the Loyola campus, I got an opportunity to live with the famed entertainer Bob Hope and his family. I was brought into their home, and he became a mentor to me. One day when we were out in his car, he said, “Tony, you’re struggling because you think you have a ministry, but you don’t know where, or what to do with it.” He went on to tell me, you think ministries can only be in a church. That’s not right. True ministries can be found in the entertainment industry. Sports. Business. Everyday life. “Your ministry? It’s in politics. That’s where you belong.” Mr. Hope was also Mr. Prophetic.
I wrote to my hometown congressman, Bernie Sisk, who responded by meeting with me. This led to a staff position in his congressional office in Washington, D.C. We spent fourteen years together. I rose to the position of chief of staff and spent time in the district and Washington. There, I joined the network of congressional staff who helped me understand how legislation really gets enacted and the levers and tools that members and staff use to get things done.
In 1978 I ran for office myself, and after a hard-fought campaign (during which my opponent attacked me for thinking that someone who had seizures could represent the district effectively), I was elected to represent California’s 15th Congressional District in the 96th Congress.
Hope was right. I found my ministry. Now I could pour the experiences of a lifetime, and the benefits of a political education, into changing how the US government relates to the 61 million Americans with disabilities under the laws and policies based on their civil and human rights.
This mattered enormously. At that time, people with disabilities were treated under US law the way I was treated under canon law. Rejection without recourse. People with disabilities had no rights to do things most people take for granted.
If you went to a restaurant and you were sight-impaired, couldn’t read the menu, and asked for help, they had a right legally to kick you out, and there were no “appeals.” If you were in a wheelchair and went to a movie theater, they had a right to kick you out legally; you were considered a fire hazard. If you went for a job interview, and they knew or believed you had a disability, they could deny you a job and say using their outside voice it was because of your disability.
A Growing Protest
But in the decades leading up to our passage of the Americans with Disabilities Act (1990), people with disabilities increasingly came to view themselves not as individual “victims” but as a community with a shared identity, a shared history, and a commonly held need for accommodation, culture, and a cause. It was the uncommon strength of the disability community whose fight for disability rights led us to the fateful day when President George H.W. Bush signed the ADA into law. Acknowledging the pervasive discrimination faced by people with disabilities, the ADA created a mandate to work for its elimination. It was the first civil rights law for people with disabilities.
The huge array of public accommodations made legal by the ADA enabled us to bring our talents to the workplace, our money to the mall, our souls and hearts to church. Thanks to ADA, where once we were blocked from riding buses, now buses bow to us. But society at large has benefited from these reforms too—not only in the US but in more than 50 other nations which have adopted statutes modeled on the ADA. Think of volume controls on cellphones. Or the curb cuts used by people in wheelchairs, but also by elderly moms, fathers with their babies in strollers, the delivery folks who serve the businesses on that street.
A Religious Welcome?
We have more to do. The work starts with the disability community—we are our best and most reliable advocates. We must continue to grow in our self-confidence, our ability to project political strength, boldly and with pride. The goal is to get the government and every facet of our civic life to recognize, accept, support, and practice true inclusion. That includes spiritual life: not just the Catholic Church but the congregations and leaders of all our diverse religions, each with histories of excluding people with disabilities from the centers of their faiths.
My direct appeal to our churches is to accompany us and accept us. In this Ignatian year, stand with us as we struggle and seek to redeem fully our rights to life and health care, our rights to succeed or fail on our abilities, not because of or despite our disabilities, our rights to fuller access so we may enjoy freely and equally all the pursuits and passions our neighbors enjoy. We don’t have that now, but we will.
I have epilepsy and I thank God for it. Unbidden as it was, my epilepsy gave me a powerful sense of conviction. It made me a better Christian. It helped me wait across decades for my parents to reach out and apologize for rejecting me, long past due as it was. Though I’ll never know the good works I might have done as a priest, epilepsy allowed me to be the person I am and showed me how I could make a difference.
A Vatican Conversation
In 1987, I led a bipartisan congressional delegation to visit the Pope. I was given a State Department- and Vatican-approved text to read at our meeting with His Holiness. When the moment came and I actually talked to John Paul II about my experience with the church and epilepsy, I deviated wildly from the script, to the astonishment of my “handlers.”
“Your Holiness,” I said, “I need to tell you something personal. As a young man, I decided to become a Catholic priest. But I was kicked out because I had epilepsy. I think that was very un-Christian of our Church and I think you ought to look into it.” As we were leaving, the Pope turned to my wife and blessed her; he turned to me and did not bless me. But he did say, “I heard your comments,” before he turned and walked away.
We must never give up. Canon law was changed in 1983, removing most of the prejudice against epilepsy. Nevertheless the church must continue to broaden its welcome and hear the voices of those with disabilities. We need to keep deviating from the script to make that happen.
Tony Coelho is a former six-term US congressman from California (1979-89) and the primary sponsor of the Americans with Disabilities Act of 1990.An advocate for disability rights for decades, he founded the Coelho Center for Disability Law, Policy and Innovation at Loyola Law School at Loyola Marymount University.