Happy (Belated) Birthday, Jon Will

Photo credit: Washington Post

Photo credit: Washington Post

Jon Will celebrated his birthday at the start of May. Here’s a little bit about Jon and his parents. 

Jon was born in 1972, the year before I was. At the time, it was still standard to ask the parents whether they planned to take their child born with Down syndrome home. His father writes of Jon’s parents’ reaction:

Nonplussed, they said they thought that is what parents do with newborns.

Fortunately, this practice has changed:

Surely … fewer doctors suggest to parents of handicapped newborns that the parental instinct of instant love should be tentative or attenuated, or that their commitment to nurturing is merely a matter of choice, even a question of convenience.

Indeed it has, with institutionalization no longer being the norm, and children born with Down syndrome thriving more than ever, thanks to being welcomed into a loving home and a more inclusive society.

In Jon’s life, he has benefited from early intervention, worked for a governmental agency, and now for the Washington Nationals professional baseball team. But his father observes something that I had not appreciated, being a parent of a young child with Down syndrome.

Writing of Jon as an adult, his dad writes:

[H]is most poignant problem is that he is just like everyone else, only a bit more so. A shadow of loneliness, an irreducible apartness from others, is inseparable from the fact of individual existence. This entails a sense of incompleteness-we are social creatures-that can be assuaged by marriage and other friendships, in the intimacy of which people speak their hearts and minds. Listen to the wisdom whispered by common locutions: We speak of “unburdening ourselves” when we talk with those to whom we talk most freely.

Now, try to imagine being prevented, by mental retardation and by physical impediments to clear articulation, from putting down, through conversation, many burdens attendant on personhood. The shadow of loneliness must often be somewhat darker, the sense of apartness more acute, the sense of incompleteness more aching for people like Jon. Their ability to articulate is, even more than for everyone else, often not commensurate with their abilities to think and feel, to be curious and amused, and to yearn.

This makes me very sad, because it is no doubt true.

A sense of loneliness is built into the human experience. Jon’s dad is exactly right that the difficulty in both articulation and expressing those thoughts must no doubt compound that sense of loneliness.

As his dad notes, because of Jon’s intellectual disability:

Jon frequently depends on the kindness of strangers. He almost invariably receives it, partly because Americans are, by and large, nice, and because Jon is, too.

I hope others appreciate this interrelationship of the needs associated with Down syndrome.

The challenges associated with Down syndrome can accentuate the challenges of the human experience of a feeling of loneliness and needing others. But those same challenges require the rest of us to be kind to those with Down syndrome. And each of us can always be a little kinder to others.

For this reason, I join his father in his lament that:

Because of advancing science and declining morals, there are fewer people like Jon than there should be.

Often there are commentators on this blog that don’t think anything of advocating for society to encourage the termination of pregnancies carrying a child with Down syndrome because they see Down syndrome as nothing but a burden. I always challenge them about whether they know someone with Down syndrome. Invariably, they either do not, or they exaggerate the tangential relationship they do have.

I issue that challenge, because more often than not, if you know someone with Down syndrome, you do not think the world would be richer for them not being here–rather you find that your life is better for having known them. Hence, me sharing Jon’s father’s lament, because when the world has fewer people with Down syndrome than nature would have delivered, then there is that many fewer people that have that experience. As a result, there are that many more people that may be coarser in how they view a fellow human being as simply a burden to be avoided.

Jon’s parents are almost as remarkable as Jon is.

His father is the columnist and T.V. commentator, George Will. His mother is Madeleine Will, who served in the Department of Education, improving special education, worked to pass the law for expectant mothers to receive the information and support they need, and now is working to improve opportunities for individuals with intellectual disability to be included in their communities as adults. I’m proud to call her my friend.

So, Happy Belated Birthday, Jon Will. Your life has made an impact for good beyond what many would have ever expected on the day you were born.

Comments

  1. Jo Ann Simons says:

    Great and thoughtful post. Thanks for writing it and Happy Birthday Jon Will! Jon Derr is 25 on Saturday and is taking 3 friends to Fenway.

  2. I agree with Jon’s father when he says, “There are fewer people like Jon than there should be.” It’s a dirty shame that so few parents are willing to bring a child like Jon into the world, when the world could only benefit from such people. God knows we need more beauty, more compassion, more love and more joy in this world, Today’s children will grow up without ever having to display patience, tolerance, compassion or empathy for anyone who might be a little different, because only “perfect” children are allowed to born. It’s too bad that so many obviously don’t know the definition of perfection.

  3. This is a niggle, perhaps, but I disagree with George Will about our moral decline. He himself acknowledges, in your quote above

    “fewer doctors suggest to parents of handicapped newborns that the parental instinct of instant love should be tentative or attenuated, or that their commitment to nurturing is merely a matter of choice, even a question of convenience”

    Signs of moral progress, surely?

    • A fair point. But one can be a sign of improving morality and the other, which he cites as an example of moral decline, can be a sign of declining morality.

      • We have not come as far as we need to. But in this case it seems the evolution of attitudes to people with DS has been outstripped by the pace of technological change. A cause for serious concern – I have no argument with that. (And many thanks to you for fighting this battle. All of us who have children with DS owe you a debt of gratitude for all your work). We cannot be complacent. But I think there’s room for optimism too.

        This may be a trivial point, as I say. But I’m a bit wary of the claim that things were always better in the past – not least because this rhetoric seems to position us as helpless to do anything about it.

        Oh, and I’d like to join everyone else here is wishing a happy belated birthday to Jon Will!

  4. Happy birthday Jon. I do not know your dad but I have admired his writing for many years. I do know your mom and there is no one I hold in higher regard. Thanks for being a light for people like my Rachel, people you will never know.

  5. Jim Gaffney says:

    Happy 42nd birthday, Jon, and continued good luck with your OFA recovery program – Orioles Fan Anonymous.

  6. Happy birthday, Jon Will!!!!! This is a very good post, Mark. “Because of advancing science and declining morals, there are fewer people like Jon than there should be.”–this just breaks my heart.

  7. Happy Birthday, Jon Will! And this for this post, Mark. Great, as usual!

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  1. […] when a child with Down syndrome was born, parents were asked if they planned on taking their baby home with them. Still, the default was exclusion, […]

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