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    Schooling Me, the Surgeon

    What I’ve Learned from Children with Disabilities

    By Joseph Dutkowsky, MD

    March 22, 2019
    • Donna Hatch

      Thank you for this article. It was exactly what I needed to read right now. The sentence regarding every heartbeat being a gift from God because He is not finished with you meant the world to me. Every heartbeat gives us time to work on our narrowness, to open our hearts to grace and understanding and to become better people. There's still time to be who God wants us to be, because of the gift of that heartbeat.

    • Bob Taylor

      Another infusion of grace from The Plough. Thank you. I just sent this article to two people, and will probably send it to a third. For me, the observation which made me want to shout with gladness was the doctor's noting that we who are disabled never get a moment off. Indeed, we do not. So many times people, usually relatives, have tried to make me feel badly because, having been severely disabled since I survived a mass murder at age 7, I haven't been able to work. I have usually wanted to scream at these people that if they think my life is a perpetual vacation, I'd be oh so willing to trade places with them if God would permit it. Instead, I just look at them with the sort of hard glare Flannery O'Connor was said to be capable of.

    • Shirley Jones

      As a mother of a beautiful daughter with Downs Syndrome I am touched and blessed greatly by this article. All that you describe and more has been shown to me by my daughter and I am so grateful to God for her! Thank you for putting into words the positive reality of living with a disabled family member.

    • Joel Keller

      What a touching article; it made me weep. This, to me, holds a mirror up to/in our society...and makes us (me) stop & think about what is really important. We - broken human beings - are the ones in Jesus' mind/heart when He chose the Cross. I'm so grateful for my health, and am forever humbled by His love. Thank you for sharing these beautiful insights.

    • Dan Davis

      I shared this article with a family in our congregation who have a ten year-old with mitochondrial disease. It brought them great joy and comfort. Thank you for sharing a portion of Dr. Dutkowsky's story and passion for his work.

    Joseph Dutkowsky is an orthopedic surgeon who specializes in treating children with disabilities such as cerebral palsy, spinal bifida, and muscular dystrophy; he divides his time between Columbia University in Manhattan and Cooperstown in upstate New York. Recently profiled in the New York Times and on PBS, he stands out as a rare public example of someone whose faith infuses his practice of medicine. Plough recently caught up with him on the road between jobs.

    Plough: What drew you to working with ­children with disabilities, and what keeps you at it now?

    Dr. Dutkowsky: Well, the truth is I haven’t the foggiest notion what drew me to this work, but I can tell you how it happened. I was working on the West Coast for an aerospace company analyzing nuclear-weapons testing data and decided instead to apply to medical school. I wrote that I wanted to take some of this aerospace technology that was being employed to blow people up and use it to help people with disabilities, particularly children. I have no idea why I wrote that, but I did and it launched my vocation. It’s the best job in the world.

    You’ve said that when you stand before a child with disabilities you feel as though you are standing in the presence of God. Can you explain what you mean?

    One of the things I have learned working with people with disabilities is that they live closer to the cross than the rest of us. They carry their disabilities all the time. They don’t get a day off. They don’t get a minute off. People with spasticity or athetosis feel it every day. People with Down syndrome have it wherever they go. And their disabilities are just as real and just as physical as the wounds on Jesus’ hands and feet or the spear mark in his side that Thomas put his hand into. And so I find they bring me closer to the cross. They feel it; they sense it; they’re part of it more than I am. I sometimes have to think my way there, whereas they simply guide me – they take me by the hand and bring me there. When you are there with them you are next to the resurrected Christ. That is the revealed glory of God.

    You recently spoke to the Catholic Medical ­Association about the development of a modern form of eugenics, commenting, “Functional eugenics has now permeated our culture to a level of acceptance never achieved before.” How do you account for this insidious trend?

    There was a time, twenty to thirty years ago, when we really thought special education was important. It was a priority for us as a society; we passed laws, we appropriated funds, and we talked about it in depth. Now we think we cannot afford it. It has become almost exclusively an economic issue. And when you take the money away, all the other arguments – the cultural and social arguments – have no depth. It’s like walking into the ocean up to your ankles: all that water, but only your feet get wet. This is what we’re seeing with eugenics. The difference between the eugenics of a hundred years ago and today’s functional eugenics is primarily economic. Our mentality today says if something isn’t going to earn money for you (or worse, if it’s going to cost you money), throw it away. This approach is bad enough if we’re talking about coffee machines or cars. But it’s gotten so bad that now we treat people this way.

    laughing disabled boy sitting with caregiver

    Photographs courtesy of Rifton Equipment.

    Dr. Jérôme Lejeune was the physician who first counted forty-seven chromosomes on a tissue sample from a person with Down ­syndrome. He was struck immediately with two competing realizations. One was that for the first time, there existed a scientific basis that could be used to improve the lives of people with Down syndrome. But the second was that society could use this discovery to subject these people to discrimination, segregation, and even extermination. He wrote, “I see only one way left to save them, and that is to cure them.” Sadly, we are seeing today a declining will to save these people, to give them our best.

    What should be our response as people of faith?

    Our response is to proclaim that life is the greatest gift we can possibly be given. Nobody can will their heart to beat even once. Every heartbeat is a gift from God and it means he’s not done with you yet. The idea that we are going to put less value on another person’s heartbeat because they are disabled or because they carry an incurable disease is anathema to us. Remember, when Jesus rose from the dead he restored life in God-made man! In the face of that gift, how can we denigrate the life of any other human being?

    A few months ago on Twitter a user posted this comment: “I honestly don’t know what I would do if I were pregnant with a kid with Down syndrome. Real ethical dilemma.” Within moments the prominent British evolutionary biologist Richard Dawkins responded, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” This prompted a firestorm of debate that was picked up by news outlets around the world. If you had the opportunity to speak directly to Mr. Dawkins, what would you say?

    Well, the first thing I would ask him is how many evolutionary biologists are happy with what they are doing in the world right now. You see, studies have shown that over 95 percent of people with Down syndrome are happy with their lives. They are satisfied. They’re enjoying life. They appreciate the people in their lives. They feel loved. I’d like to know the numbers for evolutionary biologists. I’d like to know the numbers for orthopedic surgeons. Find me a group of people in this country who are as satisfied with life and as happy as people with Down syndrome.

    The second thing I would tell him is that there is a price to pay for ignorance. Our last century has been brutal, and the cause is largely ignorance. Dawkins needs to educate himself and gain some firsthand experience with people with Down syndrome. I followed this story as it unfolded, and I applaud the person who responded to Dawkins by inviting him to dinner to meet his two children with Down syndrome. Richard Dawkins should revisit this question after he’s taken the time to meet a few of the people he’s talking about.

    A remark you made when PBS profiled you last year struck me: “Suffering is real, but sharing suffering is a gift.” Could you elaborate?

    Suffering is very real. We’re afraid of it. We run from it. But it’s there, and when we learn to share it with others we draw close to them. Through that, we learn about love. I can’t manufacture love; love is a gift. It comes to you and through you from God. It’s like the stained-glass windows in a chapel. When you go in there at night in the dark they don’t show anything; but when the light comes through them you see the glory of the colors and the beauty of the images, and it stirs you and brings you hope and joy. It brings you closer to God. That’s what sharing love is all about.

    disabled boy lying in smiling caregivers lap

    You know, I truly believe that if God is gracious enough to let me get to heaven I will recognize Jesus because his will be the only disabled body up there. The scripture says that when we arise we will be given new heavenly bodies. But scripture also clearly says that Jesus ascended to heaven with the body that hung on the cross, with the nail holes in his hands and feet and the spear hole in his side. He carried with him the wounds on his head from the crown of thorns, the battered body from an all-night whipping. All those wounds will be there, and that is how we are going to recognize him. That’s why these people are always bringing me closer to Jesus, because that is how we will encounter him at the end of our lives.

    You have spoken of your medical work as a ministry. But who is ministering whom?

    Our culture is addicted to perfection. If you just get the right car, the right wife, the right job, everything will be okay. But it’s a lie. And the culture of perfection is one of the most dangerous things we face today. None of us is perfect. I’ve got my scars, you’ve got yours. But people with disabilities have taught me to recognize my own imperfections and to accept them. And through that they have taught me to learn to love myself as I am. This is one of the toughest things people struggle with today. I think it helps explain much of the drug abuse, alcohol abuse, domestic abuse, and suicide we see today. People are unable to love themselves, so they strike out in other ways. People with disabilities show us the value in our own life. This is a beautiful thing they give us. And it’s not just children with disabilities who teach us. You go into a nursing home and talk with the residents and you discover the same thing.

    In speaking about your practice you’ve sometimes referred to “Grand Canyon moments.” Can you give me an example?

    In modern medicine, you’re often jerked about in three directions at once. Your pager is going off, your secretary is calling, the administrator wants something or other, and you’re madly trying to meet everyone’s needs and then something like this will happen: I had a young woman in my office with cerebral palsy whose arms were all pulled up against her. She asked me for Botox injections on her arms. “I can do that,” I told her. Botox for someone with spasticity and contractures helps relax the muscles. After I administered the injections she turned to me and said, “Thank you, doctor. You know why I asked you to do this?” I said, “No, why?” She looked at me and said, “So I could hug my mom.” Right there everything else going on around me faded away. It’s like you’ve turned around and you’re standing on the edge of the Grand Canyon looking out over this expanse that no words could ever describe. And you realize you are standing in the presence of the glory of God. And you say to yourself, “What did I do to deserve this?” I think it’s God’s way of telling me, “Hold on a minute. Let me tell you what’s really important.”

    You’ve suggested that people with disabilities have something of great value to contribute to our society. What are we missing out on if we try to shield ourselves from the effects of disability?

    God forbid, if we were to rid ourselves of our special-needs children we might as well just live in a black-and-white world instead of full color, because we would be taking away the beauty inherent to life. Get rid of the blue sky we’re enjoying today. Get rid of the gorgeous fall colors we’re seeing outside – just make them shades of grey. That’s what we’d be doing. People with disabilities share amazing things with us. As I said, they live closer to the cross. They understand better. They know they have a disability and they don’t try to be something they’re not. People with Down syndrome know they have Down syndrome, they know they don’t have your intellect. It’s okay with them. They’re happy where they are. They tell us to accept our own imperfections, our need for forgiveness, our need for redemption, our need for being ­recreated. Through this we become better people. We become more satisfied. We become more whole. What a wonderful thing to reach the end of your life and think, “I’ve had a chance in this life to become more whole because I have spent time with people with disabilities.”

    Interview by Joe Keiderling on October 3, 2014.

    Contributed By JosephDutkowsky Joseph Dutkowsky, MD

    Joseph Dutkowsky, MD, Associate Medical Director of the Weinberg Family Cerebral Palsy Center at Columbia University, is a leading specialist in the fields of physical and intellectual disabilities and a pediatric orthopaedic surgeon.

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