The Boy Full of Joy

World Down Syndrome Day is celebrated on March 21 every year. This is symbolic: Down syndrome is the name we give when a person has a triplication of their 21st chromosome—hence the date, 3/21.

I knew none of this a year ago. Because one year ago, we had no diagnosis. We just had a sleepy kid with low muscle tone, who was born bravely and in a hurry.

He had three older brothers who adored him from the minute he was born, just down the stairs from their room. We gave him a name—Griffin—and with no diagnosis, no other “name” was needed.

Learning that there was a World Down Syndrome Day was fun and gooey at first, and then it felt like a moment of drowning.

I am finally beginning to let myself think about how hard Griffin’s life will be. He will spend more time in doctors’ offices than the rest of our family combined, and he may have already. He will face discrimination and be overlooked—by companies, schools, governments, and maybe even by some in the Church.

I don’t even know what language I’m comfortable using, but he does have “special needs,” and plenty of people who don’t know his light and inner grace firsthand will think treating him fairly is just too much work.

And, most darkly, there is the question of his lifespan. The thought—a cold, real, possibility—that I will outlive Griffin is demolishing. Knowing that despite medical advances that happen during his life, Robyn and I may have to bury our son—that our big three may have to bury their little brother someday—is enough to break a man where he stands.

Writing and reflecting is perhaps the only way I know how to put myself back together, so that’s what I have done.

I have not been able to stop thinking about two very difficult questions:

What makes a good life? Who deserves one?

What makes these questions difficult is not the answers, but the sacrifices the answers require.

A good life is pretty simple. It does not take being a multimillionaire.

It’s a place to call home. To be free and have agency in what happens to us. To love and be loved. To be able to learn and create. To care for one another and be cared for. To feel relatively sure you have a meal coming, and medicine when you need it. To be able to sit under a tree and pray. To have friends.

We all intuitively know this. We already know what makes a good life.

Before Griffin’s diagnosis, I believed that everyone deserved at least this. And that belief implies sacrifice. For everyone to have this, it know it takes paying taxes. It takes volunteering and looking after your neighbor or the other kids on the block, for no reward. It takes giving away your knowledge for free. It takes participating in civic life. It takes apologizing for mistakes and learning to be kind even when you’re having a bad day.

These, and more, are really hard sacrifices. And I have believed in making them and have tried to do so, however fallibly.

But now, for Griffing, I depend on everyone else to believe this too. Because he does have “special needs,” and I can’t fulfill them all—even if I were the wealthiest man in the world. It is a feeling of nakedness I would never have anticipated, but I have no choice but to place myself and Griffin in the care of others. I need others for him to have a good life.

Now, I can’t just believe that everyone deserves a good life. I can’t just be a small beacon that nudges the culture towards these sacrifices, without much consequences if nobody else cares.

Now, I have consequences. For Griffin to have a good life, others have to believe he does, too.

Now, my son’s life depends on others also believing in this vision of what a good life is, and that everyone deserves it—even if their needs are more “special” than someone else’s.

What I now depend on—other people’s generous and righteous beliefs—is what I probably have the least control over in the world.

When I was young, my dreams were so vivid and noble.

I wanted people to get along. I wanted to throw parties where other kids at my high school didn’t have to drink. I wanted to help people make their nonprofits effective. I wanted people who were excluded and misunderstood to be included. I wanted to write plays and stage them for free in public parks. I wanted to invent something that fixed something nobody else saw. To make it so that work didn’t have to suck, and to make government agencies super effective and virtuous. I wanted to comfort friends when they were sad and stand firmly beside them to witness their joy.

These were my dreams. deep down, they still are.

But as I’ve aged, the weight of responsibility has left me groaning. Bills. Taxes. Feeling like selling books is the only thing that justifies the time I spend writing. Hustling. The cost of organic eggs. Raising good kids and being good at my job. You know, grown up stuff.

All these things burn up all the oxygen the dreams I had as a boy need to keep breathing. These dreams have been living in thin air for so long, I wonder how long they’ll last. And now, on World Down Syndrome Day, the weight of responsibility felt at its peak.

But that boy—full of joy and optimism, untethered by responsibilities, perfectly content drinking cheap beer—is who I still am. Under all the armor and rain jackets, I’m still that guy who has faith that his dreams and sacrifices will be met with an outstretched hand by compassionate and generous strangers.

I don’t need to become him again. When I take all the heavy rocks out of my backpack, I am him. I am still that boy full of joy.

That guy is who my sons are mirroring when people say, “they’re just like you.” That guy is who they need. That guy is who my neighbors need.

That essence of that guy is what Griffin got in not one, but maybe three or four full measures. Even when he is ill, joy pours out of him by the bucketful. He may have needs that only about 1 in 700 people have, but his gift is also that rare, at least.

That gift of joy—whether it comes from his extra chromosome or not—is the spark for me to be that boy full of joy again, who dreams of that a good life and believes that everyone deserves it. Griffin’s joy sustains my faith that other people believe it too.

Is the company designed fairly?

Would I be willing to switch jobs with anyone in the company? For real, would I?

To the philosophically inclined reader this question rightly feels familiar. It’s a version of the Rawlsian thought experiment which utilizes the “veil of ignorance” to examine the design of a society.

Rawls was a 20th century political philosopher who was interested in ideas about justice. His most discussed work was A Theory of Justice. That work explores whether a society is just, not enterprises, but the idea is still helpful for corporate types like me.

The idea, in broad strokes, basically goes like this.

Let’s imagine that we were designing a society from scratch, with a totally blank slate. We’d have to make all these decisions about how people are treated, how the economy works, and who has what rights and privileges. Really important stuff to decide, right?

But there’s a catch. We don’t know what our own role in this new society will be. We could become a street sweeper, a musician, a stay-at-home-dad, a CEO, or a veteran wounded in war. As Rawls puts it, we’re designing this society from behind a “veil of ignorance” because we don’t know what our specific situation will be while we’re making all these decisions.

Rawls’s thought experiment isn’t a proposal for how to design a society - it’s obviously not practical and basically impossible to actually deploy. But it is a good test. In the society we’re designing, would we be okay with essentially being randomly assigned to a role? If so, the society is probably just because it is fair.

Which is where the question opening this post comes in, it’s loosely based on Rawls’s veil of ignorance thought experiment: if I would be willing to switch jobs with anyone in the company, the enterprise is probably designed fairly.

Just about every organization I’ve observed or been part of fail this fairness test, though I suppose some are more “fair” than others.

What would have to be true for a company to be “fair” and “just”?

In my experience, the main points of contention around fairness and justice in companies are between front-line employees and management. The paragraph below is how I imagine many front-line employees view the managers and executives of their company. And I’ll own it - this paragraph is absolutely informed by own experiences, from my first job slinging popcorn at a movie theater to being a middle-level manager in a fairly large enterprise today.

I would love to switch places with those people at corporate. They don’t do any of the “real” work in this company. People like us make the products and services for the customer. People like us are on the front-lines generating all the real sales to the customer. If the people who “manage” or work hum-drum desk jobs left, the company would keep running. If we left, the company would fall apart at the seams.

And yet, we are the ones getting screwed. We are the ones who bust our bodies in factories and do hard physical labor. We’re the ones getting yelled at by customers. We’re the ones working nights and weekends. And of course, we’re the ones who get paid less. We don’t get stock options, bonuses, or generous benefits. We’re also the ones who get cut first in a recession, unlike the people working at the headquarters.

And on top of all this, we are disrespected. In the company, people don’t even share news of what’s going on and they talk to us like we’re dumb. The higher-ups are condescending towards us. And, society itself looks down at us, even though, again, we’re doing all the real work to make the things they buy at the store.

It’d be one thing to deal with all this nonsense, too, if the higher ups actually knew that they were doing. They don’t. We’re the ones who know what all the problems are, and those corporate people just come up with their own ideas and never listen. They make bad decisions which get us into problems all the time. And I’ve hardly ever had a “good manager” in my whole career, and for all this talk about “leadership development”, nothing changes. People like me are held accountable for our job, and we get fired if we’re not cutting it. But nobody holds them accountable for being bad managers.

So yeah, if you ask me if this company is designed fairly, I’d say absolutely not.

Obviously, that passage is fictitious and a bit on the nose. But I do think it hits on a lot of the tensions that make enterprises unfair and even unjust. People who work on the front line have extremely difficult jobs, but they’re often paid much less or at a minimum are disrespected. People with cushier setups get paid a lot more, have much higher status, and yet they often aren’t held to a high standard.

I am not above reproach on these issues, though I hope my errors are not intentional or gratuitous. To me the lesson is pretty straightforward, and applies largely to people, like me, who are in the management class of organizations.

If I am lucky enough to work a cushy job with cushy benefits, I have to hold myself to a higher standard. I have to earn those spoils. I have to be good at my job, I have to always treat others with the utmost respect. I have to make good decisions. I have to lead and develop others. I have to take responsibility for the team’s success and be held accountable for bad calls.

Perhaps there’s an argument to be made that managers and executives don’t get a fair shake, but I think that’s unlikely. It’s also not unreasonable to argue that if people get into management positions via a fair process, it’s not the company’s fault that opportunities in society are unevenly distributed. And again, the veil of ignorance is simply a thought experiment and not a practical strategy, regardless of whether it’s applied to designing societies or designing enterprises. All this is to say, my setup here isn’t squeaky clean or clear cut - I acknowledge that.

But I don’t think the conclusions of the exercise are unreasonable either: we should treat people with respect, we should compensate people fairly, and if we’ve got a cushier setup than average, we should earn it by holding ourselves to a commensurately high standard. 

Those takeaways apply to managers and executives (myself included) more than anyone.

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Equality begins at home

Women are not treated fairly in America.

The splitting of daily domestic responsibilities is one way that this unfairness manifests (there are many more), and it’s the one area I kinda sorta understand so I’ll stick to this narrow subject.

In the past year, two unexpected things happened to help me learn this unfairness existed, even in our own home. First, I was furloughed from my job. My wife became our primary breadwinner and I picked up the role of lead parent, plus 20 hours a week of contract work. Second, Robyn became my office mate and I began seeing up close the tax domestic responsibilities put on her.

I never actually understood “mom brain” until I was trying to do what Robyn had been doing since Bo was born: juggling like 5,000 different details and bids for her time. It’s more than a full time job. But beyond that, it shreds your brain and zaps energy.

I lost a measurable amount of weight within week of becoming lead parent. It was hard to be at my best, because I was mentally and physically blitzed, every day.

And, I felt less valuable, honestly, despite Robyn’s best efforts to make me feel honorable and appreciated. Our culture doesn’t make domestic work heroic, even though it is.

Women bear a disproportionate amount of these domestic responsibilities in America. This is a fact. I liked to think I was some sort of exception and this was not true for us, that somehow our distribution was fair despite the odds.

Wrong. I was lying to myself. Our split of home duties wasn’t egregiously unfair, but they weren’t fair. Which we are working on and have been for the past year. It was tough to read as a man, but if you’re interested in this idea, check out the book Fair Play for a ton of stories and a framework for working toward a fair arrangement.

Of course, what “fair” looks like varies by family. A family with historic gender roles can be as fair or unfair as a family with both partners working outside the home. Both can be great setups, but both can also be unfair - usually for women.

This unfairness makes women pay a tax on sharing their talents with the world. It’s just much harder to contribute something - whether at work, through community volunteering, or through a hobby or passion - when you have a case mom brain induced by an unfair balance of domestic responsibilities.

Robyn, still, gets interrupted more when I’m on duty with the kids because she’s the one they want to kiss their boo-boos. Robyn, still, gets her day hijacked more by “emergencies.” Robyn, still, gets more judgement if we have a messy house, messy kids, or miss some sort of caregiving responsibility.

And so she’s taxed on being able to contribute her talents fully. And because she’s my officemate now, I see firsthand how she has to work harder at everything to make the same contribution I can. Which isn’t fair.

The worst part is what the world is missing out on, by treating women unfairly. Whether it’s through a job, a hobby, or community effort, our culture taxes the gifts and talents of women. The loss of that taxation of talent is probably measured in the billions and trillions of hours, dollars, or quality of life years.

So what do we do differently? And by we I mean my brothers, because I’m writing to other men - husbands and fathers, specifically - today. I think we have to do the work with our partners to determine what’s fair in our own families. Because I’m convinced equality has to begin at home.

And it’s for real really uncomfortable to talk about, because even though we may think we have a fair situation going (I did), we probably don’t (we didn’t). And I felt a lot of guilt realizing Robyn was paying a tax on her talents, directly because of me. I was unintentionally harming her. And owning up to that sucks, but don’t we owe that to our partners and the other important women in our lives?

But gender equality is really good for us, too. We have more social permission to be part of home life. Like being fathers or caregivers. We can say, “yup, I can work on this, but after dinner and bedtime”, or, “no, I can’t make the call because my wife has a commitment and I’m watching my kids” with less stigma.

I think if we do the work at home, more equal public policy like paid family leave, childcare support, or reforms to prevent harassment and domestic violence probably follow in spades. Because we’ll have walked that road with our partners and will be emphatically motivated to advocate their interests, because now we understand more of the tax they pay.

This year has opened my mind to the win-win generated by gender fairness and equality, however that’s defined for our individual families. The sacrifice is us doing the difficult work to make things fair at home. But that sacrifice will be so worth it if we choose to make it.