A few months ago I got into a Facebook spat with a former high school classmate about the Obama “you didn’t build that” line. He reposted it; I replied, “…coming from the guy whose parents paid for a high-end private boys’ school education”; he said he didn’t understand what I was talking about and I then explained that he, like many other people, had benefited from a tremendous amount of luck, and that whatever he thought of his own life, he didn’t build that either. In the ensuing discussion (which ended with everyone unconvinced and me having a reason to dislike his seemingly stupid wife) I ended up pointing out that we all benefit a tremendous amount from a variety of forms of luck (or suffering from bad luck) and other kinds of explicit and implicit governmental and personal support, and saying that I’d rather live in a society in which the government acted to mitigate bad luck as much as possible via a tax on good luck.
This brings me to my son Jules. As many of you know, Jules was born with an unusual genetic disorder (9p deletion syndrome) whose long-term consequences are unclear. Short-term medical consequences included a submucous (under-the-skin) cleft palate, which required surgery a few months ago, as well as three weeks in the neonatal ICU ($20,000/day!) as his heart struggled to push blood through his body. For reasons no one understands — at one point a doctor suggested that we might want to let Jules die, rather than putting him through what seemed at the time to be a series of necessary surgeries to replumb his heart — Jules’s heart eventually grew out of its initially deformed state, and is now indistinguishable from a normal heart. Jules was also lucky, relative to other 9p deletion cases, to avoid distorted sexual organs, a misshapen skull (though you can still feel a ridge on his forehead where the bone fused a bit early), and a few other problems. Once the heart thing cleared up we were left with a moderate case of low muscle tone (seriously low–Jules couldn’t lift his arms off the ground for the first couple months; it took him a year to sit, and he’s only now, at 2 years 3 months, beginning to walk), speech and hearing delays (connected to the cleft palate and some malformation of his ears), and, though we don’t know the toll in the long run, some potential cognitive impairments.
(On the one hand, how unlucky to have a child with a disability! On the other, how lucky to have a disabled child who has a very mild case of the disability he has! But all this lacks context: because, finally, how lucky to have a child with this disability today, in the United States, in a family that has social and financial resources, and an extended familial and extrafamilial support network — as opposed to 50 years ago, or today in poverty or in a state in which disability is still a reviled and shameful thing. [More on that latter bit in a forthcoming post on Jules and my Chinese relatives.])
For disabled kids today the key words are “early intervention.” Research has shown that extensive efforts early in life can produce radically improved long-term outcomes for the child and his/her family. These outcomes have the advantage of being far cheaper for the state, which is why in the United States disabled children are automatically eligible for Medicaid, and why their physical and cognitive development is supported at the County and State levels (until age 5) and by school districts (from 5-18). As a result Jules has had since the sixth week of his life several hours of therapy a week. It’s now about seven — two hours of physical, two of speech, two of developmental, and one of occupational — all of which are designed to help maximize his genetic/cultural potential and to catch him up with his peers (or at least keep him from lagging further and further behind them). It’s thanks to the efforts of his wonderful therapists that Jules is doing so well today, that he’s made huge leaps both physically and communicatively, and has become a typical adorable and crazy-making two-year-old.
(Let me make the point again: this is cheaper for the state in the long run, since it reduces the amount of other kinds of lifelong support Jules will need [perhaps down to zero]. But it would be right, as I will suggest below, even if it were not just cheaper in relation to Jules alone.)
Anyway. I’ve been thinking about Jules and luck since the Mitt Romney 47 percent business. Obviously it’s always bad luck of a certain sort when a child is born disabled (I don’t buy the whole “it’s a chance from God to become a better person” nonsense). But it would have been much worse for Jules had we had to pay for the therapy ourselves. At some point we would have bankrupted the family, or had to cut back on therapy for Jules, both regrettable outcomes. Thinking beyond Jules himself, our daughter Lola would also have suffered, since through no fault of her own her opportunities to go to college would have been constrained by the family’s financial difficulties; likewise, Lola’s children (or Jules’s, if he ends up being socially and intellectually capable of having them [though he would have to adopt, given the 9p]) would have suffered a radical decrease in luck as a result of having impoverished grandparents.
Somehow for me the cascading effects of a piece of bad luck seem more clearly than anything else I’ve thought of in the last few weeks to illustrate the importance of the welfare state and the reliance down the generations on precisely the kind of “handout” that keeps a vast range of human possibility alive for its beneficiaries. Then I read that, according to Mitt Romney’s mother, the family spent a few years on “welfare relief” when George Romney was a young man, and I wonder at the human capacity to erase the memory of that bad luck, and the support that went with it, in order to produce a maximally self-aggrandizing narrative of personal triumph and success, as though we were all alone in the dark, swimming bravely against the currents, leaping forever alone into the great voids before us, and filling their emptiness with our giant, immortal, pillars of achievement.
I’d rather hold hands, and know that my hand’s been held.