Roy Exum: A Life Worth Living

Sunday, October 29, 2017 - by Roy Exum
Roy Exum
Roy Exum

On the first weekend of this month, I got a call from Tuscaloosa that Gene Stallings had suffered a severe heart attack. I distinctly remember saying, “if we go from bad to worse, at least he will be with Johnny.” All across the South those connected by sports know that John Mark was his father’s constant shadow in the years ‘Bebes’ was winning championships at Alabama. They are also well aware Johnny is almost an equal legend to his Pop.

After I heard Stallings was on a respirator, I spent more than an hour sharpening my memory and I read some that included his son, John Mark, who lived an absolutely stunning life with Trisomy 21, Down syndrome. Johnny died in August of 2008 after making a huge impact on everybody he ever met. I will always cherish that he never forgot anyone’s name … “What cha say, Ex!”

Coach Stallings rallied from this month’s heart attack, even attending a team reunion in Tuscaloosa two weekends later, but I don’t believe I have ever known anyone like Johnny who was developmentally challenged yet touched so many people. Down syndrome people can do that, I’ve seen it too often to swear that’s the truth.

"When he was younger I prayed to God that He would change Johnny,'' Stallings once said. "That He would make him right. But you know what God did? God changed me. That happens every once in a while. ... I'm not really sure that Johnny wasn't an angel. He never said a bad word, never had a bad thought, loved everybody that he came into contact with.''

There is a bronze statue of Gene and Johnny at Faulkner University in a tribute that was planned before Johnny died. University President Billy Hyler remembered, “Johnny was an individual who did excel in the really important things in life. He was a champion in heart, in spirit and in character. He was a teacher to all of us of the things and of the qualities that build good relationships.

"Johnny taught us something about love. He taught us something about friendship. He taught us something about caring. He taught us something about the power of a simple smile. And so when we think of our athletes, and though we want them to be fast and strong and talented and all that, and we do want to win championships ... but in spite of that there are some things more important than winning on the field. And we think Johnny and Coach and the Stallings family exemplifies the qualities that we hope and pray our student-athletes will incorporate in their lives.''

What if I told you that several foreign countries are on the very brink of eliminating babies born with Down syndrome? Science has developed a prenatal screening test that can identify a Down syndrome gene and since the early 2000s, in Iceland and Denmark almost 100 percent of women where it has been identified have had abortions rather than give birth.

Already three states are considering laws that will not allow this to happen in the United States and, on just Wednesday of this week, a man named Frank Stephens appeared before a hearing at the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies to address the state of medical research on Down syndrome.

He gave the most powerful talk in Washington in years!

* * *


Mr. Chairman and Members of the Committee, it is an honor to be here today as part of this panel.  Just so there is no confusion, let me say that I am not a research scientist. But no one here knows more about life with Down syndrome than I do.  If you take nothing else away from today’s hearing, please remember this, I AM A MAN WITH DOWN SYNDROME AND MY LIFE IS WORTH LIVING.

Why do I feel the need to make that point?  Across the world, a notion is being sold that maybe we don’t need to continue to do research concerning Down syndrome. Why? Because there are pre-natal screens that will identify Down syndrome in the womb, and we can just terminate those pregnancies.  In places as wide-spread as Iceland, Denmark and South Korea, government officials have proclaimed that these government encouraged terminations will make them “Down syndrome free by 2030.” 

It is hard for me to sit here and say those words.  Let’s be clear, I completely understand that the people pushing that particular “final solution” are saying that people like me should not exist.  They are saying that we have too little value to exist. That view is deeply prejudiced by an outdated idea of life with Down syndrome. 

Seriously, I have a great life. I have been a guest lecturer at major universities. I have contributed to a best-selling book, had a feature role in an award-winning film, guest starred on an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great.  I’ve even been to the White House twice, and I didn’t have to jump the fence either time (!)

Seriously, I don’t feel I should have to justify my existence, but to those who question the value of people with Down syndrome I would make three points.  First, we are a medical gift to society. As you have heard, our extra chromosome makes us a blueprint for medical research that could reveal answers to cancer, Alzheimer’s, and Immune System disorders. If not for us, then for you and the one’s you love, fund this research. 

Second, we are an unusually powerful source of happiness.  A Harvard based study has discovered that people with Down syndrome, as well as their parents and siblings are happier than society at large. I know happiness is not something you can assign dollars to, but surely it must be worth something.

Finally, we are the canary in the eugenics coal mine.  Genomic research isn’t going to stop at screening for Down syndrome. It won’t be long before we can identify all manner of potentially expensive medical or personality “deviations” in the womb.

As a society, we have an opportunity to slow down and think about the ethics of choosing which humans get a chance at life. Let me just repeat what I said. We are helping to defeat cancer and Alzheimer’s and we make the world a happier, kinder place.  Is there really no place for us in this society?  Is there really no place for us in the NIH budget? 

On a deeply personal note, I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimer’s.  It is likely that this thief will one day steal my memories, my very life, from me.  This is hard for me to say, but it has already begun to steal my Mom from me.  Please think of all those people you love the way I love my Mom.  

Help us make this difference. Let’s be America, not Iceland or Denmark.  Let’s pursue answers, not “final solutions.”  Let’s be America.  Let’s pursue inclusion, not termination. Let’s make our goal to be Alzheimer’s free, not Down syndrome free.

* * *

“Kindness is the language which the deaf can hear and the blind can see.” -- Mark Twain

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