Will’s Poignant Admiration: Why Life and Love Matter

George Will’s son, Jon, is turning 40. With Down syndrome apparent at his birth, Jon’s entrance into the world was greeted with a sterile question from the doctor to the parents: “do you want to take him home with you?”

The Wills wondered, “isn’t that what new parents do with infants?”

Will has written a beautiful piece in honor of his son, whose well-lived life is a pointed and dignified rebuke to a society that now aborts 90% of all babies suspected of carrying an extra chromosome. It is a must-read:

Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.

After I read the whole thing I pulled this book down from my bookshelf. This excellent collection of Will’s columns has survived my periodic donate-to-library purges because the stuff he’s writing about is timeless, but also because I was so very taken with another of Will’s columns about his son Jon, entitled, “Golly, What did Jon Do?” in which he smacks around the American College of Obstetricians and Gynecologists and their enthusiasm for pre-natal screening:

Medicine has. . . no ability to do anything about Down syndrome, so diagnosing Down syndrome can only have the purpose of enabling — and in a clinically neutral way, of encouraging — parents to choose to reject people like Jon as unworthy of life. And as more is learned about genetic components of other abnormalities, search-and-destroy missions will multiply.

The quality of Jon Will’s life, his father writes, is just fine. It is a life lived with dignity in disability: “Jon experiences life’s three elemental enjoyments — loving, being loved and ESPN. For Jon, as for most normal American males, the rest of life is details.”

Beautiful. The more our society insists on unattainable perfection and ponders who is “unworthy of life”, the more we need to hear about love and loving and what it means in real life.

RELATED: Thomas McDonald over at God and the Machine links to a video that demonstrates how fully we are beginning to incorporate the idea of euthanasia. A mother wants to euthanize her son and daughter, whose bodies are broken down and whose cognitive function is not really known. They’re not “brain dead” but their lives might seem like vegetative wastefulness to some — if the video is proof, then to many. In an interview, the mother says others should not judge until they’ve walked a mile in her shoes.

Well, I am not going to judge her, but I am going to say that in my family, we did walk in those shoes. When one of my brothers suffered a brain injury at age 20, it certainly changed a great deal in our family life. With my brother half-paralyzed, one leg amputated to the hip, nearly blind, prone to seizures and with a limited vocabulary, he was certainly a challenge to all of us, and of course a heartbreak for our parents. We heard “he’d be better off dead” and “after seeing him like this and your pain, I begin to believe in mercy killings” many times from “well-meaning” folk who were made uncomfortable by his imperfect and abnormal presence.

People are afraid of what they cannot control and they say stupid things, so you forgive that. Caring for a family member in this shape is difficult, draining, and people can get worn out when everyday serves a cocktail of love and sorrow. It’s possible that this mother is also wondering who will love and care about her children when she is gone, and seeks to settle that issue before it arises. No, I am not going to judge her. But I will sneer a bit at “Dr. Phil” who has enough grace to mention to this woman, and his audience, that for all anyone knew, the morning sun coming through a rec-room window brought a heart full of joy to her children, who simply could not express it or share it — and to imply that such a capacity deserved respect — but then seemed ready to let the “democratic” mob in his audience dictate moral authority. Because mobs full of people who don’t know what they’re talking about but know what makes them go “eww” are true moralists.

A few years before my brother died, he became ill and needed a very minor procedure. Without it, he would likely get worse and die. The doctors were shocked when my sister and I said, “of course we want you to do it.” To them it seemed like a no-brainer: who would want a life so reduced in quality? “It’s the life he has,” we said, “and he’s entitled to it. It may not be the life you think you’d want, but he loves music, and he has friends he laughs with, and he watches his tv shows and likes to sit outside and draw and listen to the birds. He loves flowers. It’s his life! No one is entitled to take it from him.” One of us even said — and I am not sure who, because either of us are capable of being this direct: “one day this might be all the life you have, and you might find yourself wanting to live it, even if others can’t see the point.”

They didn’t like it, but they did the procedure and my brother lived for four more years before passing in his sleep. They were his years, even if they made no sense to anyone else, and he was entitled to them.

Lots of people’s lives make no sense to others. That doesn’t mean we put human beings down and let only the perfect, the beautiful and the most fit inhabit the planet. Even if the moral geniuses think otherwise.

About Elizabeth Scalia
  • conservativemama

    If my 50 years of life have taught me anything it’s that the more we plan the more we tempt the fates. Trying to make everything perfect, just so, is asking for trouble.

    We have to live, and let life happen, and accept with all the grace we can what is given to us. The worst moment of my life, a moment and a decision that almost killed me, was a choice that our society promotes. A decision that the me I am today would not have made. A decision that took me down a path to become the me who today would choose differently.

    It wasn’t abortion, but there was a loss, and I carry guilt because I said yes to a pre-natal test. I cannot imagine the pain that women who’ve had abortions carry. I hurt for them and for the women who will make that choice one day.

    Life is glorious, but it’s not a perfect ride. We are imperfect humans who are meant to experience the joys and pains. Isn’t that what God did when he sent his son to us? Christ lived our life, with our joys and pains. Our humanity is diminished as we try to smooth out the roller coaster experience that is life. How will we recognize joy and good, if we never know pain and loss? Do we live, or do we exist?

  • Dee

    I will never forget a series of columns George Will did back in the early 1980s about a Down syndrome boy named Phillip Becker whose biological family refused a life-saving heart operation for him. He never lived with them, but a kindly couple fell in love with him and advocated for him. The Beckers did not appreciate Mr. Will’s public interference. I didn’t know about Mr. Will’s son so when I got to the last paragraph of this one column it left me breathless. Basically he said that there were two things to know only one of which mattered. First the Beckers were suing him. Then matter of factly he wrote that “Jonathan Will, 9, trout fisherman and avid Orioles fan, has Down syndrome.” Every couple of years I think of that paragraph and every time my eyes tear. Happy Birthday to Jonathan.

    By the way, does anyone know what happened to Phillip Becker? I’ve googled before, but never found out if the operation was ever approved over his biological parents continued efforts to thwart it.

  • http://jscafenette.com Manny

    Oh that choked me up. George Will is just the best writer among the pontificating columnists. Though I love his political insights, he’s even better when he’s touching on every day life.

  • Peggy m

    I read the readers’ comments on this article in the Washington Post. Besides the usual unhinged remarks are some observations by apparently well-meaning people to the effect that abortion is sometimes the answer, don’t judge others, etc. I “know” one of these people through participation in a Post literary forum, and have gotten to like and admire her. She is invariably pleasant and kind, well educated, and thoughtful. She is one of the few people in the forum who is a practicing Christian (Episcopalian). It is jarring to me to read her comment, in which she praises Mr. Will for, in effect, loving his child, but gently chastises him for not seeing that others just don’t have it in them to raise a defective child and thus abortion is the answer for them. There are many people I know (including friends and family) who agree with this sentiment. Some have convinced themselves that abortion can be a compassionate act.

    There is such a stark split in our philosophical outlook that one would think we were raised in different cultures. It comes down to basic, first principles in how we view (and approach) life and our position in the world. I guess we ARE from different cultures.

  • Roz Smith

    Many years ago I worked at a firm where one of the founders supported a group home for adults with Down’s Syndrome. The home placed those who could perform low level tasks with local businesses. We always had two or three of their residents working with us as part timers. They’d maintain the coffee stations, deliver documents within walking distance in downtown Chicago, maintain the vault where the client files were stored, deliver mail, etc. They were uniformly delightful people who spread cheer in what could be a fairly cranky place to work. They were also far more diligent at some tasks than the “normal” file room clerks at firms I worked at later in my career. I can’t recall a single instance at that firm of a missing file!

    When the show LA Law introduced the character of Benny Stulwitz I had to wonder if the creators had had a similar experience in their careers.

  • http://www.sherryantonettiwrites.blogspot.com Sherry

    My father has Alzheimer’s. My son has Down Syndrome. My mother and I face the same road daily. She because the man who went to Harvard Law School sometimes struggles with Curious George. But he still ends every day with “I love you.” and we all know it even on the day when those three words won’t be spoken.

    Me because my son can tell me whatever he needs, but the rest of the world hears Ahhh. Rahh. Rahh. “I know it means I want the dogs next door to come out so I can bark at them.” and that jumping up and down is his way of saying, “The bus is late and I want to go to school.” He says “IRUVYOU” and we know it. He nodds his head when we repeat it. It may never get clearer, but it’s there and he means it with his whole heart.

    There are 1000 of moments that reveal the lives my father and son have, that show they still have much to teach us who must care for them, who must continue to love them, who must make sure they get what they need when they need it. Snips of songs my father can still sing, touches of the rosary, the rhythms of the mass, he knows them in his bones even as his brain is forgetting.

    My son sings in only one place. Church. No one full throats Alleluia like him. He’s three but when the cantor begins, he chimes in. Sometimes he doesn’t finish when she does. But he does it and we all know, he’s singing. He’s singing the Alleluia with a full heart like we’re supposed to.

    We cannot last long as a society if we will continually be drawing smaller circles of who is acceptable in society. who is perfect and useful and important enough. Eventually, we will be outside of that circle, because before we’ve even drawn it, we already are.

  • http://www.sherryantonettiwrites.blogspot.com Sherry

    sorry for the typos….rrrrr. hate sloppy work.

  • Rhinestone Suderman

    Sherry, with the rise in Autism cases, and the push to get us all into government health care, it’s just going to get worse.

    We need to pray. . .

  • http://www.myspace.com/peterriedesel Pete in Mpls.

    Dr. Phil = therapy porn.

  • SusanM.

    It occurs to me, that even the most brilliant human who has ever, or will ever live, is as far beneath the intellect of the Living God as an amoeba is to us. So apparently, intellectual accomplishment was not His highest priority when he created us or we would at least rival the angels on that score. The difference between the intellect of a person in, say a vegetative state, is hardly less than the average person’s when measured on this scale.

    God still, for His own infathomable reasons, loves us and has made us His own children for whom he died on the cross in spite of our being barely less intellectually able, compared to Him, than a mollusk. We should do the same for each other, being in his image and likeness and all.

  • http://jscafenette.com Manny

    @Peggy m
    You are absolutely right. I’ve run into the same type of people. The cultural gap is unbridgable.

    Side question. What “Post Literary forum” do you particpate at?

  • Gail Finke

    Manny: It’s not unbridgable. I used to be one of those people. I thought that I could never raise a child with Down syndrome — that I just didn’t have it in me. Then I had my own children, and I realized that thinking so was nothing but fear — fear about myself, not about the child I might have. Peggy M is wrong, and I hope people have pointed out that she is wrong, but she is trying to be compassionate. One of our country’s biggest problems is misplaced compassion.

  • Rhinestone Suderman

    Dee, yes, I remember that series of articles.

    Gail, you really never know what’s in your, or what you can do, until you’re actually faced with it. I think you’re right about misplaced compassion; in cases like this, it is, extremely, misplaced. Also, many “Normal” people are uncomfortable around the mentally handicapped, and harbor a real hostility towards them. Peggy M.’s friend might have been one of these people; nice as pie, if you’re “Normal”, but not so nice to those they see as different. I saw one sweet looking old lady take a swing at my autistic son, once. And on a blog about austism there were always posts expressing sentiments like, “Kill all autistic children, before what they have spreads to others!”

    When dealing with humanity, you have to differentiate between “Nice” and “Good” sometimes.

  • http://jscafenette.com Manny

    @Gail Finke
    You’re right. I used to be one of those people too.

  • Kristen indallas

    @ Gail – I totally agree, and never have bought the line that abortions have anything at all to do with a potential imperfection in the child. Handicapped children are aborted or given away the sam reason healthy ones are. Parents fear they won’t be perfect enough themselves. We all know that no one is perfect… but our pride makes us want to hide our imperfections anyway. Marriages, children and especially special-needs children are all really good at exposing our weaknesses. We just have to help people see that as a good thing :)

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  • Peggy m

    Gail, I hope you understand that I do not agree with the misplaced “compassion” of “nice” people who think abortion is sometimes the right thing to do. I oppose abortion, that was my point. I find that many people in my life have an entirely different way of viewing the world. I am a stranger in a strange land.

    Manny, I participate in Dirda’s Reading Room, as does “bls2012″” the “nice”, cultured Episcopalian who seems to think abortion can be merciful.