The health care system fails new father J. Robbins
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In the independent-rock world, J. Robbins is a hero. Over roughly 20 years he’s built an impressive résumé, both with the bands he’s led (Jawbox, Burning Airlines, and Channels) and the others he’s recorded (Against Me!, Murder By Death, Jets To Brazil, The Promise Ring, and many others). Along the way, Robbins has become known as one of the good guys—a genuinely nice, decent, and thoroughly unpretentious person in a business that typically kills off those parts of the personality. That reputation helps explain the outpouring of help that followed an announcement early this year that Robbins’ infant son, Callum, was diagnosed with spinal muscular atrophy Type 1 (the most severe). The disease impairs the brain’s ability to communicate with muscle groups, and children born with Type 1 generally don’t live past age 2. As with all things medical, the costs of raising a severely disabled child are enormous. Robbins and his wife/bandmate, Janet, only have single-payer health insurance, which doesn’t cover all of Callum’s treatments—including special physical therapy at a center in Mississippi that has shown promise. To help defray costs, Robbins’ friends and admirers have organized benefit concerts around the country. This weekend, there are a trio of sold-out shows in both Chicago and Robbins’ stomping ground of Washington, D.C. Here, Shellac and Dianogah will play Subterranean Friday night. In D.C., The Dismemberment Plan is reuniting for a pair of performances. Before the benefits, Robbins spoke to The A.V. Club.
The A.V. Club: Can you give an overview of what happened?
J. Robbins: Last September, our son, Callum, was 7 months old, and we had been concerned for some time that he didn’t seem as physical as he should have been for his age. We didn’t really have a lot of other babies around to compare him to, and our pediatrician was saying, “He’s just mellow. Every baby develops differently, and at a different pace. Look, he’s really very bright and very present, so his intellect and his head is sort of moving ahead of his body, so to speak, and it will all work out. Don’t worry.” But he got to be around 7 months, and we did have the occasion to see him with other kids his age, and we got really worried. He just wasn’t mobile. He wasn’t sitting up. He had rolled over once at about five months, and then he just didn’t do it again. That’s when we set up a different appointment, and our pediatrician was like, “Well I wanted to be able to say, ‘Don’t worry,’ but actually I think something serious is wrong.”
AVC: So that’s when he was diagnosed?
JR: Right. He was diagnosed with Type 1 as an infant. Of course, there are people who survive into adulthood, but they’re severely, severely physically handicapped. They are definitely wheelchair-bound, and they need to have full-time care all the time. So, that’s on the bright side, and of course the dark side of it is, you know, he…[long pause]
JR: But in Callum’s case, we feel like he’s a little bit ahead of the game, because even though his diagnosis is a Type 1, the fact is he actually has a really strong cry, and he seems to have really strong lungs, and he doesn’t, at this point, have any trouble managing his secretions. He has really good head control—he can hold his head up most of the time. When you meet him, he’s obviously impaired because he can’t sit up, but in a lot of ways he just seems very strong. People who know about SMA have all been surprised when they hear that he’s a Type 1 baby, because he just seems much stronger than that.
AVC: Were you guys reluctant to come forward about this?
JR: Well, not that we were reluctant to tell people. We found out in September; at that point, it sort of threw us into our own little world where our big focus was just to be aggressive and find out as much as we could find out. We became very insular because that’s just what happens.
AVC: Kim and Bill, your old Jawbox bandmates, set up a website for online donations.
JR: Kim, innocently enough, says, “Can we do some fundraising for you guys?” I’m like, “Yeah, that’s amazing. Thank you. That’s wonderful.” What came out of that was people suddenly became aware of what was going on with us in a much different way—this real viral, internet kind of way. That gets into a whole different issue because as me—just as me, J., the person that I am—thinking about it in a theoretical way or a sociological way, maybe I’m not 100 percent comfortable with a lot of it.
AVC: Right, of course.
JR: On the other hand, as a parent, it’s amazing. The truth is, overwhelmingly, Janet and I feel really lucky. We’re lucky for the support, just on a practical level, as parents trying to take care of Callum and trying to push the envelope of what we can do for him. But also we feel lucky because there’s a feeling of having a really supportive community around us… So that’s why I feel like if we’re in this public position, the one thing that I always want to stress is that people who are gonna have kids, people who are thinking about having kids, or they’re pregnant, they should insist on being tested for this. There has to be a greater awareness that this is possible, that this condition that is such a huge fucking deal, it can literally come out of the blue like this. The fact is that the tools exist for people to know, and the fact that it’s not routinely tested for is just astonishing.
AVC: Especially if one in 40 people carry the gene for it.
JR: It’s practically—Janet just said “criminal” from the other room. I mean, everywhere you turn in this situation, you get into really heavy shit.
AVC: You want to talk about puppies or something?
JR: Yeah, seriously.