On Rick Santorum, political messaging, and children with special needs

[Guest post by Rose Woodhouse]

Rick Santorum has an internet ad out, which you can see here. [Editor’s note: I am hopelessly inept at embedding video, for some reason.  I apologize for making you click through. — RS]  The main suggestion of the ad, as far as I can tell, is that he is especially admirable (and, by implication, especially vote-worth) because he has a disabled child.

His daughter Bella has Trisomy 18, a rare genetic disorder. In the video, he says Trisomy 18 is similar to Down Syndrome. I actually have no idea why he said this. Perhaps he wanted to throw out the idea that his daughter has mental retardation without using the “R word.” But it is misleading. Trisomy 18 is, in general, far more devastating than Down Syndrome. Most babies with Trisomy 18 die in utero. Upwards of 90% who survive birth die within the first year of life. Of those who live, most function in the severe/profound range of disability (unlikely to walk without assistance; completely non-verbal or perhaps only a few hundred signed or spoken words; unlikely to achieve even the basics of self-care, such as toilet-training). In contrast, people with Down Syndrome are much higher functioning – usually mild to moderate. Most children with Down Syndrome can walk by 24 months. In the video, Bella, who is 3, appears to have some degree of head control but appears unable to sit independently.

One of my sons also has a rare genetic syndrome, one that is actually much rarer than Trisomy 18. People with his particular version of his syndrome also usually end up in the severe/profound range. One significant difference is the mortality rate, which in my son’s syndrome is only about 10% for the first few years of life. Bella is unlikely to live past her 20s or 30s, whereas my son is quite likely to live to his fifties or even older. But I do have a pretty good idea what it is like to raise a kid like Bella. Like Santorum, I can see a six-year-old child with Down Syndrome on a playground and know that my kid will never do what she’s doing, even when he’s an adult.

So, the question is, how does having such a child make him more electable?

Before I start the criticisms, one word in defense of this video. There are some (including me), who already loathe Santorum. Most notoriously, his views on homosexuality are beyond retrograde; they’re antediluvian. And morally repugnant. And ill-informed. Some of us
Santorum-despisers might be tempted to think that this video is an entirely cynical ploy to get votes that exploits his child. That he’s
just “using” his child. I think this is not entirely true. Sure, he’s aware that it might get him sympathy, but I don’t think his showing her off is entirely cynical. He was told his child would die. We were told our child would be blind, mostly deaf and profoundly disabled. As it happens, my kid has functional vision and is extremely social and smiley and responsive – he’s 26 months old and has the approximate cognition of a 12-month old. This takes him, most likely, out of profound and into moderate/severe. I realize that this is not most parents’ dream come true. But when your child exceeds expectations, no matter how disabled he still is, you want to shout out from the rooftops and show him off to everyone. In short, you are proud of your kid and proud of yourself for helping see him to that point. So I don’t think it’s entirely cynical.

But.

To begin with, can I just say it drives me a little nuts that he says that disabled kids are better than the rest of us? It’s condescending and fundamentally denying the fact of their disability. Okay, petty objection dispensed with.

Of the real points, first, as discussed here, is his opposition to most government programs intended to help those with disabilities. Most egregious is his opposition to the Affordable Care Act, about which he says, “I look at how society with socialized medicine treats children like Bella, and children like Bella don’t survive. Children like Bella are not given the treatment that other children are given.” I can’t speak for Trisomy 18, but I am in contact with plenty of British parents of kids with my son’s syndrome. They are more apt to complain about a waiting list for an adaptive tricycle than about being denied life-saving care. More relevantly, the ACA has been a boon to children with severe disabilities. There is no basis whatsoever for thinking our children will be denied care, and every reason to be pleased that we can no longer have our children denied coverage for a pre-existing condition, and there are no lifetime caps on benefits. As a parent of a severe/profound child, he is in a special position to know just how many doctor’s visits that means, how many hospitalizations, how much medical equipment one needs to have. And how completely screwed you would be if you had no coverage and Medicaid fell short.

Second, people tend to attribute a sort of moral glow to you when you raise a disabled child. I don’t know how many people say to me, “I couldn’t do what you do.” But, really, it’s just not true. People might think I’m wonderful for taking care of my child. But do you think they think it would be understandable if I neglected my child? If I didn’t take him to therapies and doctor’s appointments that would help and just let him sit in a corner all day long? Of course not. And the fact is, while some people panic and abandon their severely disabled child, most people manage to take care of their kid. Not without stress and depression and anxiety. But you do it. One is not actually morally special. And he is willingly taking on a morally special status with that ad. He’s saying, basically, that you can tell he’s an especially good person just for raising his child. While it probably means he’s not a lout, it’s somewhat dishonest to pretend he’s a moral better. He might be a moral better if he were out there, raising awareness and working to get help for other severe/profound kids. If he’s done that, I haven’t head about it.

Third, there is the implicit anti-abortion message throughout. We are to think highly of him because he did not abort his child. And actually, he seems to have put his money where his mouth is. Both screening and diagnostic tests exists for Trisomy 18 during pregnancy, and he and his wife appear not to have availed themselves of them. But this is what gets me. He, better than other people, should understand how incredibly difficult it is to raise a severe/profound child. It is much more difficult than even a moderately disabled child (which is, of course, no walk in the park). For example, see here for a comparison between raising a child with Down syndrome versus a rarer, severe/profound syndrome and here for a study that shows severity of disability correlates with parental stress. And the financial burden is enormous. Instead of showing soft focus videos about how wonderful they are for not aborting their daughter, how about working to make life easier on those who choose to have a disabled child? Respite care, educational opportunities, early intervention, medical equipment availability vary wildly from state to state and even from county to county. When we got our kid’s diagnosis, we thought our lives were over. With strong institutional supports in place, which are really only affordable to a government (as opposed to private charities), people who get such a diagnosis in utero might be more willing to take on the extra responsibility of a disabled child. In short, investing in socialized medicine might actually be very pro-life!

There’s simply no evidence that he’s really thought through issues of disability, or that having Bella makes him especially suited for office.