Down syndrome son has own gifts

May 3, 2012


— When Jonathan Frederick Will was born 40 years ago — on May 4, 1972, his father’s 31st birthday — the life expectancy for people with Down syndrome was about 20 years. That is understandable.

The day after Jon was born, a doctor told Jon’s parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

Down syndrome is a congenital condition resulting from a chromosomal defect — an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.

Now they are called American citizens, about 400,000 of them, and their life expectancy is now 60. Much has improved. There has, however, been moral regression as well.

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 have 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.

Two things that have enhanced Jon’s life are the Washington subway system, which opened in 1976, and the Washington Nationals baseball team, which arrived in 2005. He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two. The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life’s lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not.

Except he is, in a way. He has the gift of serenity, in this sense:

The oldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

This year, Jon will spend his birthday where every year he spends 81 spring, summer and autumn days and evenings, at Nationals Park, in his seat behind the home team’s dugout. The Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the republic of baseball.

— George Will is a columnist for Washington Post Writers Group.    


pace 5 years, 11 months ago

Will is pinning his tout on this innocent kid. To dismiss a person's choice of continuing a pregnancy as merely a "garish flowering of the baby boomers’ vast sense of entitlement," satisfies Will as circumstance, but does not satisfy as an honest argument. He is using the example of loving parents and their son and sticking in his schtick as cause and their motive. I doubt if he asked them, just used them. Will could ride his own dime. The use of the word entitlement is being degraded into, lets not treat people as persons, let's dismiss any one who doesn't buy or toe his particular party line as 'feeling entitled". What is Will's entitlement in this presentation? He is eager to dismiss rights and other opinions, than his own, on other families rights and decisions. His opinion has respect but his argument has not. I respect the alternate views but that doesn't mean I have to listen to an argument that is based on denigration of issues, denigration of the 'other side" by his careless consignment of motive to "feelings of entitlement"

rtwngr 5 years, 11 months ago

Nobody really likes having the truth thrown in their face, do they? That the generation that gave birth to Roe v. Wade is a bunch of entitlement, societal breast feeders. We murder children for the sake of convenience and call it "health care" and a "right".

Remember comrade, those that give you "rights" can take them away.

pace 5 years, 11 months ago

Repeating the argument serves the foxteas but doesn't serve logic. Denigrating isn't the same as argument. You think you are "entitled' to being lazy.

Kate Rogge 5 years, 11 months ago

The boomer generation didn't decide the law of Roe v. Wade as none of us were old enough to be seated on the Supreme Court in 1974. That, sir, was the previous generation - the Greatest Generation - who also created laws to upheld integration, expanded civil rights, expanded welfare, Medicare, and Medicaid. What a darn shame they're such entitlement societal breast feeders, huh?

cato_the_elder 5 years, 11 months ago

A beautiful essay about a father's love for his son, written by one of our nation's most highly respected columnists.

Thanks, Mr. Will, for an uplifting start to the day.

just_another_bozo_on_this_bus 5 years, 11 months ago

"Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not."

Oh, but he is. He was born to wealthy, well-connected parents. Down's Syndrome kids born to less fortunate parents don't get jobs in the clubhouses of major league baseball teams.

jafs 5 years, 11 months ago

I wonder if Will supports our social service programs that help kids like this, and continues to help them once adults, and if their families can't afford or manage alone?

pace 5 years, 11 months ago

He probably does, and good for those that do. It still doesn't make the argument he is trying for. Assigning motive and denigrating people a blanket condemnation, that just isn't true. Each family has their own story, it is not just how he feels and ascribes.

jafs 5 years, 11 months ago

I doubt it - he's an old school conservative who believes strongly in less government.

Those folks generally don't support social programs.

jhawkinsf 5 years, 11 months ago

Speaking just for myself, an old school conservative, we make a distinction between social programs that help people who genuinely need help and those that breed intergenerational dependence on government handouts. Programs that help those with Down Syndrome, people who have done absolutely nothing wrong to put themselves in the position they now find themselves in, these are precisely the types of programs that an old school conservative would support. An old school conservative might look askew at programs that give to people who have, to varying degrees, had a hand in placing themselves at risk, having put themselves in the position they are in.

jafs 5 years, 11 months ago

I understand and appreciate the distinction you're trying to make, and generally have some sympathy for it.

But, it's rather hard to make those accurately and well - for example, the child who grows up in poverty with uneducated parents who don't take great care of them is as much a victim as the DS child - they've done nothing wrong to put themselves in that position either.

jhawkinsf 5 years, 11 months ago

Let me preface my remarks by stating that your first comment tended to be overly broad. Not that there's anything wrong with that. It's just that those types of comments tend to be more opinionated. I will continue my reply in that manner, much opinion. The differences between the two examples given are obvious. But if we look a little deeper at your example, there seems to be problems with no solutions as well as inconsistencies in how we as a society approach these problems. You mentioned a child who grows up in poverty, uneducated, etc. Let's compare that with a child who was abused as a child, physically or sexually or both. Or a child that witnesses violence in the home. Statistics show that that child is far more likely to continue that cycle, abusing and being violent. However, we as a society will not tolerate their abuse as an excuse for what they are now doing as an adult. A child victim of sexual abuse who then abuses as an adult is held responsible for their behavior. That accountability is not as high when it comes to other behaviors. We tolerate ignorance. We tolerate underachievement. We tolerate poor decisions. But tolerating those things continues the cycle of poverty, under education, underachievement, etc. It leads to intergenerational poverty. What conservatives object to is the tolerance when it is coupled with government programs that seem to be nothing more than money pits. We've had multiple generations of anti poverty programs with little to show for it. We're told these programs work, yet our eyes tell another story. We're told that if we pump more into those programs, then they would work even better. We're skeptical. Conservatives are stereotyped as such and such. let me stereotype liberals, being a former one myself. Liberals come up with good ideas, good ideas that don't work. Then they come up with more good ideas. What they fail to recognize, what they never want to recognize is human nature. I once worked with homeless adults. I recall when I started the familiar comment, "who would willingly choose homelessness"? It was said rhetorically. But after a few years, I could give you a list a mile long. I could name names. It's not the program, it's not how it was done or the amount of money spent. The problem was what liberals refuse to accept, that some people are making this lifestyle a choice. In my opinion, that extends to adults who were formally in bad situations as children. A consistent policy, one I know you're fond of, would be to hold adults responsible for their actions, good or bad. Be they violent, abusive, poor or conversely, very successful, let them reap the rewards of their actions.

jafs 5 years, 11 months ago

Your comment was that you favor programs to help people who have done nothing wrong to put themselves in the position they're in.

Children who are born to abusive, uneducated, etc. parents are exactly that - they've done nothing wrong, right?

So, I take it you favor a wide range of social programs to help those children, don't you?

If not, you're not holding true to your own guidelines.

The question of what we do when those children become adults is a bit of a different question, of course. We could not help them as children, and then simply punish them when they make bad decisions, which is quite likely given their background.

Seems a bit cruel to me.

I understand your point that many people make bad decisions, and that we all have some sort of responsibility for them. But since one's upbringing is very formative in that respect, to simply demand that people from bad backgrounds make good decisions seems overly simplistic and punitive.

I'd be much more interested in helping them do so, both with programs to help children/families, and adults.

jhawkinsf 5 years, 11 months ago

Any reading of my previous posts will reveal that I am a strong supporter of schools, the primary resource for children. I frequently call for increased spending on schools, increased pay for teachers, a longer school year, and more professionalism demanded of teachers, again in return for higher pay. Also, I am a strong supporter of having more parks and other appropriate activities for children. My recent opposition to the vagabonds parked near South Part was directly related to the fact that it was somewhat creepy that they were so near a place where children congregate. So overall, yes, I do support programs for children. That said, I also have a strong belief that people can overcome some very negative circumstances. I've seen it many times. And given that they can overcome, they should overcome. And I'd take it a step further, they are obligated to overcome, if not for the sake of society, if not for their own sake, then for the sake of the next generation they will produce, the children. Now if they are dedicated to not producing a next generation, if they are not wanting to engage our society, then they can live whatever lifestyle they choose. But when they engage our society, when they produce challenges to our society, when they produce children, they assume certain responsibilities. Among those is to follow certain cultural norms.

jafs 5 years, 11 months ago

I'm talking about other programs to help children - schools can't possibly do it all, nor should they, in my view.

Seems to me that since many of the factors that negatively influence children's performance in school are related to their families, that programs that help parents be better parents are necessary.

Your argument seems very moralistic and unrealistic to me - the fact that a small minority are able to overcome very negative circumstances doesn't warrant the rest of your comments, in my view.

And, this "cultural norm" thing really bothers me - I prefer a society that allows for a great deal of freedom, rather than socially imposed conformity.

jhawkinsf 5 years, 11 months ago

By cultural norms, I meant things like following the law. Or raising your children with their best interests in mind. Or parents being appropriate role models. I've said before that freedom and responsibility are like two sides of the same coin. You can't have one without the other. Yes, I believe in freedom. But I believe in responsibility with equal vigor. Let me give you an example. People who smoke. We all know people who have smoked and quit. Many say how difficult it is for them, yet they've done it anyway. Now if an adult comes up to me and say he can't quit, frankly, I don't believe him. It may be difficult, just as it was for others. Maybe they're not ready, their choice. But if you tell me you "can't" quit, I don't believe you. The same is true for adults trying to overcome bad childhoods. I believe in them. I believe they can change. I believe they can overcome. If they choose not to, that's on them. We can provide tools for people to change, we can have programs. But we must be willing to say that some people just don't want to, no matter how many programs we have, no matter how many tools. And if we keep providing tools for those individuals, programs for them, then they are stealing resources from others who do want to change. That's the problem with liberals. They never want to admit that those people even exist, much less want to make the hard decision to deny them services. Ultimately, however, those who are making that choice, are taking resources that could be devoted to schools, or go to developmentally delayed adults, or to other more worthwhile endeavors.

jafs 5 years, 11 months ago

I believe people can change, but I also believe that many need help to do so.

And, I don't have as judgmental an attitude about those that make bad decisions as a result of a bad upbringing, since those two things are so intimately connected to each other.

Your attitude seems lacking in compassion to me, and rather judgmental - "it's on them".

There are certainly people that will choose to continue to make bad decisions - I don't know any liberals who deny that. Many liberals are less interested in the moral judgments, and more interested in compassion and help, that's all.

I believe that we should help those who are interested in getting help, and that they should demonstrate that interest in some way. I'm not interested in enabling bad decisions.

But, just like the smoker that tried numerous times to quit before they finally made it, people may try more than once to change their lives before they're successful.

Should we help them once, and as soon as they fall from grace in our perception, throw them out?

The other thing that you often seem to ignore is that we will pay, one way or another, for these people - we can pay for programs that try to help them, or we can pay for increased costs of the criminal justice system. Generally, I prefer to try to improve the situation, rather than paying for the damage.

pace 5 years, 11 months ago

I don't agree, I volunteer a lot, and I have worked side by side with some old school conservative. Usually when someone in family or friend has been affected, they are educated and responsive to need. I have found prejudice and compassion from both conservatives and liberals. I have had both good and bad experiences working with them. , I was raised to suspend judgement but not to offer excuses either.

Paul R Getto 5 years, 11 months ago

Wonderful column, Mr. Will. My only objection is painting baby boomers with too broad a brush. No group, even Internet trolls, should be part of this sentence frame: "All [pick your group] are _ [name your assertion.]" George, of course, is wealthy, which makes it a bit easier to manage the challenges life throws at a family. Touching and well put, but it only applies to your situation and your construction of your reality.

goodcountrypeople 5 years, 11 months ago

So touching! Mr. Will's politics do not always ring true, but he's a capable writer.

Commenting has been disabled for this item.