Keeping developmental disabilities out of the culture war

My piece in the Times: We can’t let Rick Santorum make intellectual disabilities another front in the culture wars.

(Crossposted at the Blog of the Century)

I had an online op-ed in the New York Times today, lamenting Rick Santorum’s efforts to make intellectual and developmental disabilities yet another front in the culture wars. My wife and I–like millions of other caregivers–are indescribably insulted by the argument that liberals disdain the disabled, favor amniocentesis to reduce health care costs, or look down on people who choose to raise disabled children. That’s such a poisonous and unfounded meme.

Mr. Santorum fails to appreciate many things, including the way liberal activists, politicians, and jurists have fought fordecades to expand social insurance and specific services for disabled people and their families. There is a reason the Arc and other organizations supporthealth reform.

Here is the piece. Comments appreciated. Please respect the seriousness of the topic and the deep feelings on all sides here.

One don’t get paid much to write for the Times. It is still wonderful to publish a well-edited piece in that space. An editor found my earlier column at the Reality-Based Community and encouraged me to write a related piece.

Leaving aside my own work, I hope that the Times follows this general process more often. Such reconnoitering makes more sense than relying entirely on a mountain of submissions–almost all of which are rejected without much of a close read. Editors know what they want. The web is filled with great material written by talented, but relatively unknown authors who would greatly benefit from the Times‘ global reach.

Author: Harold Pollack

Harold Pollack is Helen Ross Professor of Social Service Administration at the University of Chicago. He has served on three expert committees of the National Academies of Science. His recent research appears in such journals as Addiction, Journal of the American Medical Association, and American Journal of Public Health. He writes regularly on HIV prevention, crime and drug policy, health reform, and disability policy for American Prospect, tnr.com, and other news outlets. His essay, "Lessons from an Emergency Room Nightmare" was selected for the collection The Best American Medical Writing, 2009. He recently participated, with zero critical acclaim, in the University of Chicago's annual Latke-Hamentaschen debate.

20 thoughts on “Keeping developmental disabilities out of the culture war”

  1. I wish more people would come forward to refute the viciousness from the right. I wish we had politicians who were brave enough to fight back. I wish the people who read you excellent accounting of liberal contributions were the people who needed to hear it. Thank you for writing this for us all.

  2. Great piece!

    What I find interesting about this is that it seems that people on the right have a pretty tortured relationship with meritocracy these days. On the one hand, it is okay if a few people are billionaires, and everyone else runs in place or falls behind, because those few people are more talented than the rest of us, supposedly. And none of us owes anyone else a thing just based on a shared humanity, for example.

    And on the other hand, it’s bad to want people to go to college so they can get ahead, because that’s elitist. And how dare women want to find out if their baby is going to be disabled. Why, it should be their *privilege* to have to quit work to stay home to nurse their disabled child (while the other kids go hungry), or spend their days shuttling around to 50 different doctors, or do all the other things that have to happen when someone is ill. How dare they aspire to not have to do that??? With that great, wonderful safety net we have here. (Which admittedly, could be worse. It could also be a lot better. And which that side is trying to shred anyway.)

    And yes I know that once the child is school-age, they can probably get some help. Maybe even before that, if they live in California (for one), and are savvy.

    Those are some very confused people.

    1. It is because part of our country has what I’ve been calling a culture of misery.

      I remember the first time I became aware of it — when that woman working three jobs stood up in an audience and asked W what he wanted to do about her situation. And his response was along the lines of “Isn’t that great, folks? Look at this woman. Doesn’t she embody the American Dream?”

      We have a weird culture in this country of puritans who think that it is good for us to be miserable. That people should suffer.

      The great thing about this confused, tortured version of meritocracy (as you aptly put it) is that you can use it against anyone. Those who do too well are elitists (if they’re librul). Those who do too well are job creators (if they’re Republicans).

      Those who don’t do well enough can either be held up as the victimized taxpayers who are being held back by overbreeding brown (etc.) people, or if they ARE brown people, they can be held up as examples of people who refuse to help themselves.

      Watch it play out. You’ll see what I mean.

  3. And before everyone yells at me, I’m not saying I don’t like disabled people, or that I don’t recognize that we can often learn a lot from them.

    It’s just funny to me that people think human life is so cheap, or worthless, on the one hand — when it’s people they don’t know and whom they can on any basis blame for being poor — but then when it comes to this issue, all of a sudden, the sky’s the limit on the budget. I think there’s a word for that.

  4. I remain confused on one point of fact, namely that the ACA requires free prenatal testing, including amniocentesis. I agree that Santorum is guilty of repeatedly poisoning the well, and that he is paying far too small a price for indulging in the most destructive of logical fallacies.

    http://www.hhs.gov/news/press/2011pres/08/20110801b.html does not list amniocentesis in its listed preventive services. Is amnio listed elsewhere in the HHS website? Santorum appears to be factually incorrect on saying that amnio is a free test.

    If Santorum wants his own facts, the RBC needs to call him on it. Was I missing something at that website? Most screening is considered to fall under the domain of preventive services; why is it not listed by HHS if it is part of the ACA?

    Help, please, someone who knows for certain!

  5. I’m reminded of something a friend of mine who lived in Japan in his youth told me about how they will often handle a situation when someone commits a horrible social transgression: they will simply very politely say “I see” and then wait for them to do the right thing. If only we had the political equivalent of that in our culture. Your piece in the NYT is a pretty good approximation. Nicely done.

    1. That’s a very interesting insight, one I think we would all do well to follow when we can. By quietly acknowledging the transgression, and placing the onus on the offender to not commit the mistake again, a great deal of faith and respect is imparted, not only to the individual himself, but to the larger social project of making *and learning from* mistakes in general. It’s a conceit that allows the ego to recede and growth to occur.

  6. Hi there,

    While I certainly cannot speak to the situation you’re in, I can speak to the one I’m in. 42 and pregnant for the first time meant a very high risk of down’s, I had an amnio, and would have terminated the pregnancy had the results come back positive. 1) I would not be in a position to care long term for the child past its middle age. 2) Camlifornia is in the middle of a financial crisis, why add to it. 3) Neither me nor my baby’s father are prepared to care for a special needs child, neither psychologically nor financially.

    I fail to see why I should be apologetic for any of the above. The Christian denomination that I belong to does not have any teaching on abortion, so I’m not damning my eternal soul. And I do take the financial burden as a serious matter. Why is that a bad thing?

    What is more offensive to me in the rhetoric of the other side is the implication that the government would be making the decision to enforce an abortion of a special needs child at a death panel. No, that choice should remain with me and the father of my child, and the doctor recommending personalized care. All of the caregivers in the care I was given were VERY careful to make it clear that any choice that **I** made would be met with respect and guidance to appropriate care. Nothing in the Obama health plan seems to suggest that this would change in any way.

  7. I appreciate the way you highlighted the considerable progress that has been made on both sides of the aisle. In a season when so many are out to exploit our differences for cheap political points, it is good to draw attention to our many similarities in interest. It helps underscore how cheap the political points really are, and where our priorities are better focused.

  8. The one piece of good fortune that people with congenital disabilities do have is that their condition is fallout from a genetic lottery, largely cutting across the usual social and economic patterns of inequality. So many of the 1% (like Harold?) and even the O.1% (like FDR, JFK, and Santorum) have a close relative with such a disability. Santorum’s slime is particularly disgraceful because he has a disabled child himself.

    “Please respect … the deep feelings on all sides here.”
    Very true on abortion following prenatal diagnosis. But I cannot believe that Santorum’s smear of “liberals”, or the boorishness of those who still laugh at disability, come from deep feelings worthy of any respect.

    How close are we in fact to reliable prenatal tests for all genetic disorders, including autism and schizophrenia? Fetal diagnosis of spectrum disorders like these, linked at times to high achievement, will make the decisions even more fraught.

  9. I always like to see a post by Harold; I’m the mom of a child with a disability and I don’t get to see many posts on my disability-related concerns on the lefty/general-interest blogs I follow.

    A few misconceptions in this thread need addressing, I think. One is that pre-natal testing that comes back negative means your child won’t have a disability. Relatively few disabilities can be detected this way; we passed ours with flying colors and then my kid was diagnosed with autism as a toddler.

    I know there is a genetic test for Fragile X, Harold’s brother-in-law’s disorder, because my kid had it as part of his autism evaluation. It cost close to a thousand dollars back in 2000, so I can’t imagine it’s used regularly in pre-natal screening (Harold, please correct me if I’m wrong).

    There are lots of relatively rare disorders for which it would not be cost-effective to screen everyone, even if the specific genetic anomoly is known, and it very well might not be (as James Wimberly points out, that’s also true for a lot of frequently occuring disabilities). There are also the disabilities one acquires after birth. Prenatal testing is never going to “prevent” disability or absolve us of the responsibility of taking care of our fellow citizens with disabilities.

    If I have one criticism of Harold’s piece, it’s that it’s too nice. There may not be a fully-declared war on people with disabilities by the right but there certainly is a robust cold war. When you work to make the government “small enough to drown in a bathtub,” you are working to ensure the end of programs that support people with disabilities. If you like, call it collateral damage.

    For example, in my cash-strapped county, the waiting list for Medicaid waivers for children with disabilities is currently closed and there aren’t any indications it’s going to open again any time soon. A lot of the reason we’re cash-strapped is that the Republican commissioners gave a lot away to businesses while cutting taxes.

    There are also many things that don’t at first glance seem disability-related but are. Public schools represent the source of the only interventions and therapies many children with disabilities receive; the current movement to privatize as much of the public school system as possible doesn’t bode well for kids on IEPs. Social Security supports a lot of people like Vincent; if efforts to divert contributions into private accounts ever succeed, what happens to the funding stream for that support?

    1. This is a wonderful post. I agree (from observation) that anyone deciding to become a parent takes a gamble, even if they get every test known to man. And the rest of us owe them respect. Even if all goes well, it’s hard work!

      And even at current levels of support, I’m not sure we do enough to help. I wish it were the case that every family with members who need special services would get enough help not just to be able to keep a roof over their heads, but also so that caregivers can have a decent life. They should be able to go to a movie or out to dinner every so often, and so forth. If there are volunteers for this, great. If not, the rest of us should chip in. This is not small government though.

      1. I’m guessing the list just grew too big. As in hundreds and hundreds of names.

        When times are good, new waivers are issued and bunches of them are given out all at once, and the waiting list re-opens. Course, it might be a while until that happens again.

        Some programs, like food stamps, expand to meet the need. However many people apply and qualify for food stamps, that’s how many will recieve them. Other parts of the social service safety net have caps. It’s all very arcane. People who do not have any contact with “the system” really have no idea how complicated it is and how much sophistication it takes to navigate. And it’s worth noting that a lot of the people who have to navigate it don’t have enough of the required savvy.

  10. I don’t think I was quite clear there. I meant, Harold says, “keep disabilities out of the culture war,” but I say, there *is* already a war well underway against people with disabilities, and the right is waging it. Are their cultural war accusations a form of projection, or a diversonary tactic? Either way, it’s working for them.

  11. P.S., thanks NCG. One of the things our Medicaid Waiver pays for in fact, is a few hours of respite a month. It is also supposed to be educational. While I am out of the house respiting, the respite worker works with my kid on such things as cooking skills and community safety (e.g., crossing the street safely). There are many wonderful programs out there, and much knowledge about how to best help. If only they were properly funded.

Comments are closed.