Thursday, January 22, 2009

On this anniversary of Roe v. Wade a clarion call: "We shall not weary, we shall not rest!"

From Fr. Richard John Neuhaus, July 2008:

We contend, and we contend relentlessly, for the dignity of the human person, of every human person, created in the image and likeness of God, destined from eternity for eternity—every human person, no matter how weak or how strong, no matter how young or how old, no matter how productive or how burdensome, no matter how welcome or how inconvenient. Nobody is a nobody; nobody is unwanted. All are wanted by God, and therefore to be respected, protected, and cherished by us.

We shall not weary, we shall not rest, until every unborn child is protected in law and welcomed in life. We shall not weary, we shall not rest, until all the elderly who have run life’s course are protected against despair and abandonment, protected by the rule of law and the bonds of love. We shall not weary, we shall not rest, until every young woman is given the help she needs to recognize the problem of pregnancy as the gift of life. We shall not weary, we shall not rest, as we stand guard at the entrance gates and the exit gates of life, and at every step along way of life, bearing witness in word and deed to the dignity of the human person—of every human person.

Against the encroaching shadows of the culture of death, against forces commanding immense power and wealth, against the perverse doctrine that a woman’s dignity depends upon her right to destroy her child, against what St. Paul calls the principalities and powers of the present time, this convention renews our resolve that we shall not weary, we shall not rest, until the culture of life is reflected in the rule of law and lived in the law of love.

[...]

The culture of death is an idea before it is a deed. I expect many of us here, perhaps most of us here, can remember when we were first encountered by the idea. For me, it was in the 1960s when I was pastor of a very poor, very black, inner city parish in Brooklyn, New York. I had read that week an article by Ashley Montagu of Princeton University on what he called “A Life Worth Living.” He listed the qualifications for a life worth living: good health, a stable family, economic security, educational opportunity, the prospect of a satisfying career to realize the fullness of one’s potential. These were among the measures of what was called “a life worth living.”

And I remember vividly, as though it were yesterday, looking out the next Sunday morning at the congregation of St. John the Evangelist and seeing all those older faces creased by hardship endured and injustice afflicted, and yet radiating hope undimmed and love unconquered. And I saw that day the younger faces of children deprived of most, if not all, of those qualifications on Prof. Montagu’s list. And it struck me then, like a bolt of lightning, a bolt of lightning that illuminated our moral and cultural moment, that Prof. Montagu and those of like mind believed that the people of St. John the Evangelist—people whom I knew and had come to love as people of faith and kindness and endurance and, by the grace of God, hope unvanquished—it struck me then that, by the criteria of the privileged and enlightened, none of these my people had a life worth living. In that moment, I knew that a great evil was afoot. The culture of death is an idea before it is a deed.

In that moment, I knew that I had been recruited to the cause of the culture of life. To be recruited to the cause of the culture of life is to be recruited for the duration; and there is no end in sight, except to the eyes of faith.

[...]

In the midst of the encroaching darkness of the culture of death, we have heard the voice of him who said, “In the world you will have trouble. But fear not, I have overcome the world.” Because he has overcome, we shall overcome. We do not know when; we do not know how. God knows, and that is enough. We know the justice of our cause, we trust in the faithfulness of his promise, and therefore we shall not weary, we shall not rest.

Friday, January 02, 2009

Eliminating the retarded

Two articles I've read in the past few days have coincided. Amy Julia Becker writes on the First Things blog a response to new prenatal genetic screening for Down Syndrome:

In a letter to the editor of the New York Times, William Motley, a geneticist of Oxford University, writes, “Fighting Down syndrome with prenatal screening does not ‘border on eugenics.’ It is a ‘search-and-destroy mission’ on the disease, not on a category of citizens. . . . ” Similarly, a pediatric cardiologist writes about Down syndrome: “Tremendous social, medical and monetary burdens are inevitable parts of this disorder . . . these (prenatal) tests are invaluable, should be made available to all, and may help individuals possibly avoid a very significant life-changing illness.” Much as Mr. Motley might want to claim that prenatal screening is not about a category of citizens, the practical result of what he advises is indeed to eliminate an entire group of persons.

In a recent collection of essays titled Theology, Disability, and the New Genetics, Hans Reinders states a countervailing claim: “Life is good as it is.” Life is good as it is. It sounds simple. Theologically, it rings true. And yet the vast majority of individuals in our culture choose to terminate a pregnancy if they learn that their baby will be born with a disability. Why? If life is good as it is, why is it considered good by many in our culture to ensure that children with disabilities are not born at all?

As Reinders writes, “many people with disabilities resulting from genetic disorders experience their own lives as good.” I can certainly affirm this statement in the case of our daughter Penny, who has Down syndrome. Penny is nearing her third birthday, as she would proudly tell anyone who cares to ask. Her days consist of playing with blocks and balls and running to the playground, of reading books, of entertaining those around her with proclamations like, “Uh-oh spaghettios!” and “Okey-doke!” She loves her little brother “Wilwum.” She loves bagels and music and school. In general terms, we aren’t concerned about her health or development, and neither is she. Her current challenges include learning to swallow her drool instead of letting it dribble down her chin and learning to tell us before she needs to use the potty. In other words, there is very little that is “not good” about Penny’s life.
Today we hear that Guinness World Records has recognized Bert Holbrook, 80, of Waseca, MN as the world's oldest man with Down Syndrome.

“He understood the excitement” but not the specifics, [Bert's nurse] said.

Foley said Holbrook’s health coincides with that of most 80-year-olds.

“He’s definitely slowing down and tires easily but maintains his same daily routine.”

That includes lunch twice a week at the Waseca Area Senior Citizens Center.
Amy Julia Becker admits the real difficulties and suffering that can accompany a severe disability, but also notices how often the person is viewed as a burden not because of a specific challenge but rather just because they exist in a certain way.

Much of the alienation and stigma people with disabilities experience is a product of societal norms rather than of problems intrinsic to the disabilities themselves. Take the mainstream media. The New York Times reports: “The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49.” Suffer. High risk. Defects. Problems. This reporter goes on to write, “One doctor asked about studies suggesting there is a higher risk of early-onset Alzheimer’s disease in people with Down syndrome, potentially saddling parents with another caretaking burden as they themselves age.” Again, the language is telling—saddling, another burden. [...]

The medical establishment demonstrates a similar prejudice. Penny, according to technical language, was born with a birth “defect” or “abnormality.” And she was presumed to be unhealthy, even though we left the hospital on time, two days after she was born. She had scored an eight out of ten on her Apgar test, an echocardiogram indicated that her heart was sound, and she had no other medical issues. Nonetheless, we took with us a list of all the things that might go wrong, including leukemia, celiac disease, thyroid problems, crooked teeth, and spinal instability. None of those, by the way, were even potential immediate concerns. If our social perceptions changed, much of the supposed suffering that comes from disability would be eliminated. (emphasis added)
Around 92% of women who have their child diagnosed with Down syndrome through prenatal screening choose to abort the child. How many lives would be different today had Mr. Holbrook's mother had this option? Would the world be a better place without him, or without people like him? Is the compassion of Bert's caregivers misspent, better to have been given elsewhere to someone who "deserves it"?

I know that it can be very difficult to care for a person with a lifelong disability. But is the solution to engage in a seek-and-destroy mission against those who are created different?