A Life Worth Living

When Harriet McBryde Johnson died earlier this month at the age of 50 from a congenital neuromuscular disease, obituaries called her a "disability-rights activist." This is far too narrow a description of her life.

Harriet McBryde Johnson 1957-2008

She was less a traditional activist than an acute social conscience. Ms. Johnson forced us to look at disability in a different way -- not as something that we should seek to eradicate, but as something that is integral to the human condition, a "natural part of the human experience," as the American Association of People With Disabilities puts it.

Ms. Johnson, a lawyer, first earned national attention when she debated philosopher Peter Singer at Princeton University in 2003, an experience she wrote about for the New York Times Magazine. Thankfully free of the ponderous cant that infects so much of bioethics, she was brutally direct when she talked about disabilities, including her own. "Most people don't know how to look at me," she wrote, describing her severely twisted spine and her "jumble of bones in a floppy bag of skin." But she abhorred the "veneer of beneficence" that overlay the arguments of those who said she would be "better off" without her disability. "The presence or absence of a disability doesn't predict quality of life," she argued, challenging Mr. Singer's support of what she called "disability-based infanticide."

Ms. Johnson was part of a disability rights movement that had changed dramatically since the first Jerry Lewis Labor Day telethons in the 1960s, with their offensive references to "cripples" and their maudlin descriptions of "killer diseases." She worked with people like Mike Ervin, a former Muscular Dystrophy Association poster child who founded a group, "Jerry's Orphans," to protest the telethons; Ms. Johnson herself demonstrated every Labor Day on the streets of her hometown of Charleston, S.C. She also worked with Not Dead Yet, the disability-rights group formed in 1996 to challenge the assisted suicide movement.

Although they never formed formal alliances (and Not Dead Yet takes no position on prebirth issues, such as genetic selection), Ms. Johnson and her fellow activists often found themselves on the same side of the ramparts as conservative Christians: Not Dead Yet marshaled the support of 25 national disability groups to oppose the attempts of Terry Schiavo's husband to "starve and dehydrate her to death," for example, and defended congressional efforts to intervene in the case. As Diane Coleman, president of Not Dead Yet, told a group in Tampa, Fla., during the Schiavo controversy: "Surely, it will not be argued that the National Spinal Cord Injury Association, the National Down Syndrome Congress, the Disability Rights Education and Defense Fund and all the rest are now or ever have been puppets of religious conservatives." Indeed, Ms. Johnson, an atheist, once chastised Mr. Singer for describing his enemies as a monolith of religious faithful focused solely on "the sanctity of human life."

What Ms. Johnson's life and the organizations she worked with demonstrate is that the convenient categories we often invoke to discuss these issues -- secular or religious, liberal or conservative -- can obscure as much as clarify, and that the culture benefits from hearing arguments from advocates of both secular and faith-based perspectives. Ms. Johnson's description of Mr. Singer's philosophy -- "it is all about allowing as many individuals as possible to fulfill as many of their preferences as possible" -- could be the slogan of our impatient, technologically sophisticated age. And both conservative Christians and secular disability-rights activists have capably criticized this devotion to extreme individualism.

In many ways, the truths that Ms. Johnson forced us to confront are easier to dismiss when they come from so-called right-wing religious nuts. Ms. Johnson, with her experience of disability and her commitment to liberal principles, made people far more uncomfortable. Her critique challenged our cultural assumptions about disability. How accepting are we, really, of those who are not able-bodied? "The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist," she wrote. "My fight has been for accommodation, the world to me and me to the world." Yet, despite the lip service we pay to "accommodation" (and the genuine good that comes from legislation such as the Americans With Disabilities Act), we now find ourselves in a disturbing situation: As our scientific powers to eliminate disability grow, our acceptance of disability wanes.

To cite just one example, consider the rapid near-disappearance of people with Down Syndrome. Between 80% and 90% of women who find out they are carrying a child with the chromosomal abnormality (which can be tested using amniocentesis) choose to abort. A Harvard medical student who surveyed 1,000 women who were pregnant with Down Syndrome babies reported that many were urged by their doctors to terminate their pregnancies; one woman's physician told her that her child would "never be able to read, write or count change." This at a time when new developments in medicine have nearly doubled the average life span of people who have the condition to 49 from 25 years. As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a "democratic calculus of worth" regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

One recent effort to change this culture has come from Congress: Sponsored by the unlikely alliance of Sens. Sam Brownback (R., Kan.) and Edward Kennedy (D., Mass.), the Prenatally and Postnatally Diagnosed Conditions Awareness Act calls for the creation of a telephone hotline and peer-support programs for parents, a national registry for families willing to adopt children with Down Syndrome, as well as "up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes."

As Ms. Johnson wrote of herself and others with disabilities: "We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own." And as Laura Hershey, her friend and fellow activist, told me, Ms. Johnson "invited people to understand the value and pleasure of living a life with disability."

But if choice and prevention produce a culture that equates disability with irresponsible parenting decisions, then the homage we pay to accommodation will prove hollow indeed. And as the population ages, and more Americans find themselves living with disabilities, questions about worth at the end of life will become even more pressing. Thanks to people such as Harriet Johnson, we have not yet reached the point where accommodation has given way to neglect or elimination. But we would do well to respect what Ms. Johnson's own life so ably demonstrated: People with disabilities, she said, "have something the world needs."

ACKNOWLEDGEMENT

Christine Rosen. "A Life Worth Living." The Wall Street Journal (June 27, 2008).

Reprinted with permission of the author and The Wall Street Journal © 2008 Dow Jones & Company, Inc. All rights reserved.

Feastday: November 23

Born in Mexico, January 13, 1891, Miguel Pro grew up in a large family with six brothers and sisters. Inspired by two of his sisters who entered the religious life, Miguel at the age of twenty, prayed to God in order to learn what God's will was for his own life. Because of his great love for God, and his desire to follow His will, Miguel entered the Jesuit order at the Hacienda El Llano so that he may devote his life to the service of God.

Under the terror of the Mexican regime of the time of Calles' and Obergon's rule, came years of political and religious persecution. During this period, the Pro family suffered great great financial and personal hardship. Meanwhile Miguel and the other novices of the Jesuit order were also under severe threat of persecution, as Catholic priests and religious were among the targets of the Mexican reign of terror. After a raid of the religious' house, their superiors ordered Miguel and the other novices to escape from Mexico. Miguel's travels took him to diverse countries such as the U.S., Grenada, and eventually Belgium where he was ordained a priest on August 21, 1925. Even though his family could not be physically present at his ordination ceremony, Father Pro was spiritually present with them; blessing their individual photographs one by one.

Even though he sought to make his internal and physical turmoil hidden from those around him, Father Pro suffered great emotional pain over the constant worry he felt over his family and the physical pain which was caused by stomach troubles. Those around him even noted that at the times he felt the most pain; physical or emotional, that he would seem the most cheerful. Father Pro's physical health weakened despite several operations. In hopes of helping Father Pro to regain his health, his superiors granted his wish to return home to mexico to be nearer to his family. Little did his superiors realise the extent of the trouble that the Church in Mexico faced.

In 1926, Father Pro returned to Mexico during the height of political terror; at a time in which the Catholic Church faced great opposition as a result of constitutional amendments and legislation which severely restricted public worship. Any Catholic priest who would dare to continue to serve the sacraments such as communion, baptism, confession, confirmation and marriage risked persecution, torture, arrest and even execution!

And so began Father Pro's adventure for God, evading police in any way possible in order that he may minister to the physical and spiritual needs of all people which included the poor, the rich, workers, laborers, business and even Socialists and Communists (who were often openly hostile to Catholic Priests and the Church).Traveling via bike, and acquiring disguises such as that of a mechanic, a servant and even that of a cultured man of the world; he was able to carry out his duties for his people such as administering the sacraments and attending to the needs of people. In the spirit of Paul, the apostle, he literally became all things to all people for the sake of Christ. He won souls for Christ through prayer, humor and also through physical and spiritual aid.

While the solders and the police had their guns and rifles, Father Pro had the greatest of all weapons as he had once stated in reference to the crucifix: "Here is my weapon. With it along, I have no fear of anyone." [Ball, 32]

"I am ready to give my life for souls, but I want nothing for myself. All that I want is to lead them to God. If I kept anything for myself, I should be a thief, infamous; I should no longer be a priest."

In November 1927, Father Pro, along with his brother Humberto, became the scapegoat for an assassination attempt on the corrupt future president. The government authorities linked the Pro brothers to the crime through an old used car that had belonged to one of the brothers. Even though the authorities were well aware of the fact that the brothers were innocent, they were both guilty for being Catholic Priests. Because Catholic Priests were considered to be enemies of the corrupt regime, the government had an ulterior motive for convicting Miguel and his brother because they were the perfect scapegoat. Without due process or trial, the brothers were condemned to die. They were innocent of any crime. They were only guilty of being Catholic priests.

On the morning of November 23, 1927, Father Pro was led from his cell to the location of his execution. It did not matter to the police and soldiers that beyond the wall, within earshot, a man was shouting that he had in his hands a stay of execution that would free the brothers. The shouts were ignored and Father Pro was lead to his death. As he was led to death, one of the police men responsible for his capture asked for his forgiveness which Father Pro freely gave. Just minutes before he was to be executed, Father Pro asked to be able to pray as a last request. During this short amount of time, he kneeled upon the hard, uncomfortable ground, near the bullet riddled wall where he would soon be executed.

In submission to God's will, he accepted his fate, stood up, stretched his arms out wide in the shape of the cross in preparation for his death. After forgiving his executors, and as the squad raised its weapons, Father Pro shouted in a clear, yet loud voice :Viva Cristo Rey!." (Which means long live Christ the king in Spanish.) With humility and bravery, Father Pro met his martyrdom.

Fr. Pro was sent to France for theology and thus wound up in Belgium, the country to which the French Jesuits had been exiled.  Also, he was being trained as a priest for the working man and had contact with the French and Belgian miners.

Miguel (first row, right) was ordained at Enghien, Belgium, on August 31, 1925 by Bishop Lecomte. After the ceremony, the new priests were greeted by their relatives. Father Pro would have wished to bring down his first blessing on his mother's head, but of course the families of the Mexicans could not come. He was sad, but said, "After all, we are priests... and that is enough." Far from his own but close to God he repeated throughout the day a prayer which he later told a friend: "On the day of my ordination, I merely asked Our Lord to be useful to souls."

In Father Pro's case, Plutarco Calles wanted the execution to be a "big show" and had instructed his underlings to invite representatives from all the government secretariats, the press, and photographers. His intention was to show the Catholics as groveling cowards. Instead, the photos spoke eloquently of their heroism. After the execution, an attempt was made to recall the photographs, and possession of them became a crime. But the damage had been done -- the world had seen. Today these photos bear mute testimony to the bravery of this martyr for Christ the King.

Shortly after midnight the prisoners were taken from their cells one by one and photographed.

At ten o'clock in the morning, Pro was the first to be led out to execution. Carrying his small crucifix and his rosary, he walked steadily across the yard.

 

As his last request, Miguel asked to be allowed to pray. He knelt in front of the bullet-pocket walls and fervently prayed briefly. He kissed his crucifix and stood.

Rejecting the traditional blindfold, Miguel stretched his arms out in the form of a cross and facing the firing squad said, "May God have mercy on you. May God bless you. Lord, You know that I am innocent. With all my heart I forgive my enemies."

As the firing squad took aim, Pro spoke his last words. In a firm, clear voice, he said:

"Viva Cristo Rey!" Long live Christ the King.

The firing squad was shaken by Pro's unflinching heroism; the bullets wounded, but did not kill him. A soldier walked over and shot him at close range, killing him.

Although Calles had forbidden any public demonstration, the people acted in open defiance. Never had the city seen such an enormous turnout for a funeral. As the martyrs' caskets left the house, the spontaneous cry went up: "Viva Cristo Rey!" Thousands thronged the streets and balconies, throwing flowers, praying the rosary and singing. It was a triumph -a glorious witness to the heroism of the brave martyr for Christ the King.

November 24, 1927, at the front of the Jesuit church of the Holy Family, a multitude accompanied the remains of Father Pro.  Father Mendez Medina cried out, "Make way for the martyrs of Christ the King!"  In response, a great and unanimous cry soared from the hearts and mouths of thousands:.. "¡Viva Cristo Rey!"

 

On September 25, 1988, Father Pro was beatified by Pope John Paul II.

 

via Viva Cristo Rey and Puffin