Down Syndrome, Alzheimer’s, and a Culture of Life
In a moving column, George Will celebrates the life of his 40-year-old son, who happens to have Down Syndrome. The column, in my view, points to the necessary integration of the pro-life and pro-social justice (and yes, pro-universal health care) message.
Children with Down Syndrome can live longer thanks to many medical advances. But middle age for them brings a very difficult set of challenges. Between 90 and 100 percent of people with Down syndrome will suffer from early onset Alzheimer’s Disease. Parents of children with Down syndrome need to plan for their children’s futures, contemplating that their children will need even more care just as they begin to need care themselves. Few families have the resources to provide for patients suffering from Alzheimer’s (which cost Americans an estimated 200 billion last year, much of it covered by Medicare and Medicaid) . Families who have children or siblings suffering from the combination problems of Down syndrome and Alzheimer’s will need even more help
The negative prohibition–do not kill — is a necessary floor in moral thinking. But for the very vulnerable, including the physically and mentally impaired, it is by no means sufficient. The vulnerable, young and old, need positive assistance if they are to thrive. And no average family can meet the challenges of Alzheimer’s Disease –with or without Down syndrome– on its own.
It doesn’t just take a village. It takes a nation. It takes the common good.
Very well put. Thank you.
Cathy,
I wonder to what extent George Will would agree with you.
Probably not much at all. But then what about Jon ten years from now, without George’s resources?
It’s all very well to put up cute pictures of cute kids. But most of us don’t end life cute–whether we are normally abled or disabled.
And the dignity of the non-cute, so to speak, the dignity of the diminishing and dying–will be the issue as the baby boomers age.
“Alzheimer’s (which cost Americans an estimated 200 billion last year, much of it covered by Medicare and Medicaid)”
Cathleen – can that be right? $200 billion/year on Alzheimers alone?! That’s about one quarter of our total federal expenditures on Medicare and Medicaid for FY11. (I recognize that Medicaid also includes state funding, and no doubt there is a chunk of private insurance/private funds in that total.)
The American Heart Association estimates that the cost to treat heart disease, the leading cause of death in the US, was $273 billion in 2010 (and is expected to triple by 2030).
The annual cost to detect and treat lung cancer, the most common form of cancer after skin cancer, is $5 billion.
The annual cost of treatment for breast cancer, the most common form of cancer in women after skin cancer, is estimated to be $3.8 billion.
The US federal government spent $20.4 billion on HIV/AIDS care, research, cash and housing assistance and prevention in FY11.
Thus sayeth the Google:
http://www.alz.org/alzheimers_disease_facts_and_figures.asp
George Will is a wonderful father, a smart commentator and a great writer. He is also part of the 1%. One should not have to be a child of wealth to live a decent life in loving surroundings. But, that is too often the case. In the ‘good old days’ before the New Deal and the Great Society, private charity was not even up to the task of caring for the poorest of the poor, or the sickest of the sick. Government programs have made a critical difference, and, with the support of those of us who, by the grace of God and with no small amount of good luck, it will continue to do so in the future.
(who are more fortunate) brain lapse.
A few months ago, Cal Thomas (my third least favorite columnist), wrote an equally moving articl e on the occasion of the death of his brother who had had Down syndrome. Thomas was eloquent and talked about the way the family treated him and the care he received. I wrote to the paper noting that I wish that would translate that into an appreciation of those who are not as well attended to by loving families and adequate financial care since Thomas is often the most frugal about health care.
I had a series of intersting reactions — mostly supportive — from the L’Arche community, many of whom are friends and with whom I worship at our parish. Some from those who have children and talked about struggles in receiving coverage and some from activists who were surprised at my praising Thaomas at alll!
I’m also aware that in 1973 I wrote my moral theology thesis on “The Morality of Amniocedntesis and Responsible Genetic Parenthood.’ I took a very pro-natalist stance, but defended testing (if it were within tolerable risk limits) to prepare families for a birth of a child with developmental issues. Fast forward to 18 years ago when my wife, over 40, had a problem in early pregnancy with our first child and we were offered testing after a sonogram. We decided not to have it becasue we knew we wanted the baby and, really, the risk was not terribly great for sifgnificant complication– but there was a risk…
I can remember well standing there at that precious moment as my daughter was emerging and saying, “God, we trust you, and however this baby (sex unknbown– wanted to be surprised) comes out, we know we will love her and you will give her and us all we need…”
A beautiful baby was born — with a problem — that has affected her — but now at 17 still the most gorgeous, sensitive, articulate, and funny girl I know…She lives with her “DD,” but will be off to college and just came back from a mission week in El Salvador and is presenting a slide show in church forum Sunday about her expereinces… I’m a grateful and proud dad…and I appreciate even George Will!
sIn my State there is lots of effort to work on prevention, care for and research into Alazheimer’s ans the families thereof.
It’s easy to tals about the big bucks spent here, just as it’s easy to look ar rhings mainly through the benefits of cost untol it affects someone close.So the Gospel of Life – and justice – is not a function of dollars and cents primarily for us -or is it???
“He is also part of the 1%.”
I’ve never quite been sure of the mathematical formulation of the “1%”, but I’m pretty sure George Will would not make the cut.
I’ve never quite been sure of the mathematical formulation of the “1%”, but I’m pretty sure George Will would not make the cut.
Jeff Landry,
Below are the numbers for income levels as given in Wikipedia. I would be amazed if George Will didn’t make $350,000 a year.
Bottom 10% . . . . $0 to $10,500
Bottom 20% . . . . $0 to $18,500
Bottom 25% . . . . $0 to $22,500
Middle 33% . . . . $30,000 to $62,500
Middle 20% . . . .$35,000 to $55,000
Top 25% . . . . . . $77,500 and up
Top 20% . . . . . . .$92,000 and up
Top 5% . . . . . . . $167,000 and up
Top 1.5% . . . . . .$250,000 and up
Top 1% . . . . . . . $350,000 and up
An article in the New York Times says the top 1% earn $506,553 or more. I would not be at all surprised of George Will made that much. He works for ABC News, Newsweek, and the Washington Post. He also writes popular books, and his speaking fee is $12,500.
Re Wills’ views on social programs, it may be of interest to note that in 1995, when Jonathan Will was a teenager, George Will wrote a column lambasting conservative criticism of PL-94-142, which guarantees a free and appropriate public education to handicapped children. Ronald Reagan, Will was quick to note, opposed weakening PL-94-142. “He has enough problems without being saddled with supporters who define conservatism in terms of dismantling such protections and who associate conservatism with crackpot metaphysics about (hey, cheer up, Ethiopians) the perfect justice of the universe.”
When Jonathan was 21, Will wrote a column in which he said his son worked in the mailroom at the National Institutes of Health (a taxpayer funded concern administered by HHS) in the mailroom and voted for Bill Clinton.
In 2007, Will again wrote about his son, using his story to criticize ACOG’s recommendations for screening for Down Syndrome and saying that without screening, there would be more people like his son and the world would be a “sweeter” place.
In two of these stories, Will recounted the story about being offered the option of leaving his newborn son at the hospital. Clearly, this made a deep impression. It seems to me that it would be in keeping with Wills’ conservative position to support some measure of federal help for families caring for Down Syndrome children, particularly since this help is probably much cheaper than warehousing high functioning individuals like his son in expensive and often hellish institutions.
It’s amazing how personal experience with people who are different and differently-abled will change even the most rigid and narrowest of hearts and opinions.
Any man can make mistakes, but only an idiot persists in his error. (Marcus Tullius Cicero)
Let’s all speculate that George Will does not believe in, or contribute to, the common good. That he’s a hypocrite. Nice.
Henry Nouwen’s book “Adam: God’s beloved” is a must to understand how handicapped people can be as a mustard seed in the community. Even better in my opinion is “Becoming human” by Jean Vanier.
Let’s also speculate that Mark doesn’t beleive in the common good –
now we should try to concentrate on teh issues of life health and Gospel values beyong easy ad hominems
“…now we should try to concentrate on teh (sic) issues of life health and Gospel values beyong (sic) easy ad hominems (sic)”
Precisely! Well, sort of precisely.
An opportunity to post one of the best things I’ve ever read on the Internet: http://orientem.blogspot.com/2008/09/anne-de-gaulle.html
Thorin: Thank you.
Let’s all speculate that George Will does not believe in, or contribute to, the common good.
Mark Proska,
I am quite sure George Will believes in, and believes he contributes to, the common good. I am also quite sure that, to the extent Commonweal has an identifiable political philosophy, George Will and Commonweal are largely in disagreement. On the USCCB’s objections to the contraceptive mandate, George Will recently said, “The Catholic bishops, it serves them right. They’re the ones who were really hot for ObamaCare, with a few exceptions. But they were all in favor and this is what it looks like when the government decides it’s going to make your health care choices for you.”
Jean Raber gave some enlightening information about Will’s stands on government help for people with disabilities, but speaking in general, Will does not agree with the Catholic Bishops (or Commonweal) about how government should approach health care.
George Will quoted Will Rogers on This Week last Sunday as follows: “The only difference between death and taxes is that death doesn’t get worse every time Congress meets.” That has nothing to do with this discussion, but it made me laugh, and I have been looking for an opportunity to mention it.
Cathleen:
Thanks, I guess. My spontaneous, intuitive and ill-considered response to the George Will column was a whole lot less restrained and a whole lot more obscene than yours, although I was thinking the same general thing (I was not, however moved by the column).
Jean Raber’s summary of Will’s earlier positions are, if memory serves, accurate, but that merely heightens the hypocrisy and hackery of Will’s position, it doesn’t really vindicate it.
Moreover, as with Sarah Palin and her little-noted (except by me, I guess) speech calling for full Special Ed funding (IDEA), taking up for the “common good” only when it affect you personally and only when the subject is heartwarningly delightful, while DEVOTING YOUR CAREER to advancing the party that is committed to radical individualism, to lassiez faire, to supply-side economics and to the destruction of the safety net, isn’t really taking up for the common good at all.
In fact, it’s opposite–it’s the exploitation of the idea of the common good to advance self-interest.
“… but speaking in general, Will does not agree with the Catholic Bishops (or Commonweal) about how government should approach health care.”
I’m trying to imagine why Will would care what the bishops say; he told Stephen Colbert he was an agnostic.
More on Will’s brand of conservatism from Gale’s Encyclopedia of biography, FWIW:
“Will rejected a conservatism based on self-interest rather than on conservation. One of his works, Pursuit of Virtue and Other Tory Notions (1982), argued against self-indulgence and for a measured stability to public and private life. In short, Will argued for conserving traditional American values rather than having a free-market trample all values, traditional or not. For example, he argued, following along with Leo Strauss, that government should be a force to ensure justice, because market forces alone cannot be concerned with such a concept.”
While I’m not a conservative nor, as noted above, a fan of George F. Will (or any journalist who affects bow ties), conservatives are a useful corrective to some of the loonier notions on the left where I live.
Moreover, it’s dangerous to paint all conservatives with the same brush. Will was among the first to criticize Sarah Palin’s credentials as a political candidate.
Plus, he was, at one time, a Cubs fan, so there’s that.
I too found Wills’ essay moving. I also found Cathy’s comments commendable. She noted, wisely, that it takes a nation and an established notion of the common good to provide the necessary assistance to enable the marginalized to flourish.
I found many of the WP comments (and some of our own) disappointing for the eagerness to detect inconsistency, the perfect gotcha. For some, there is no need to take an argument seriously if one can uncover any dissonance between views the author espoused elswhere and views currently disclosed unless, of course, a ‘mea culpa’ is prominently displayed. Who among us could withstand such scrutiny if our full story were in plain view?
I often find outing phonies deliciously satisfying and yet rarely recognize myself among their number. Jon Haidt is spot on re: The Great Hypocrisy Hunt:
“It’s fun to laugh at a hypocrite, and recent years have given Americans a great deal to laugh at…Scandal is great entertainment because it allows people to feel contempt, a moral emotion that gives feelings of moral superiority while asking nothing in return. With contempt you don’t need to right the wrong (as with anger) or flee the scene (as with fear or disgust). And best of all, contempt is made to share…Tell an acquaintance a cynical story that ends with both of your smirking and shaking your heads and voila, you’ve got a bond.
“Well, stop smirking. One of the most universal pieces of advice from across cultures and eras is that we are all hypocrites, and in our condemnation of others’ hypocrisy we only compound our own.”
Jonathan Haidt, *The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom*, pp. 59-60.
Mike McG. –
I saw Haidt interviewed on TV the other night and was delighted to see how young he is. He even has a Templeton Prize for Psych., quite an accomplishment for such a young fellow. For a very long time few psychologists researched the the questions of how human nature itself is the foundation for the basic, lasting values. (Remember all the physical stimulus-and-response stuff?) The moralists would do well to listen to him and those asking the same sort of questions.
Haidt might not know everything, but I think he is on the right track for discovering more about the specifics of human nature and what makes people flourish. Philosophers’ insights take us only so far — they must be verified empirically. Ethics has to be a communal project.
I happen to find George Will consistently interesting. I often read his column, and I always look forward to hear what he has to say on ABC’s This Week with George Stephanopoulos. I am probably at least as liberal as he is conservative, but every once in awhile, he makes an observation that I wholeheartedly agree with.
It seems to me, thought, that to imply in any way that Will should be treated with kid gloves is to apply a standard to Will that he himself doesn’t apply to anyone else. Will himself is frequently scathing and does’t hesitate to accuse others of hypocrisy, foolishness, or a while host of other faults.
I don’t think it is out of bounds to suggest that conservatives (or those of any political position) with disabled children might see the issue of government assistance for the disabled differently from conservatives (or those of any political position) who do not have disabled children. I wouldn’t call it hypocrisy if George Will or Sarah Palin, having Down Syndrome children, see things differently from conservatives who do not have Down Syndrome children.
I am rather amazed that some conservatives, who are not at all disturbed when fellow conservatives heap scorn on liberals, often claim themselves to feel so wounded by criticism from liberals. They can dish it out, but they can’t take it.
Mike McG:
If you’re including me in that, I wasn’t laughing at the hypocrite. I was blood-pressure-rising, eyes-bugging-out majorly, cumulatively INFURIATED as I read Will’s column line-by-line thinking to myself “If he takes this where I think he’s going to (pro-Life hackery) without even a hint of the social justice elements (which Catherine noted), I SWEAR I’m going write an obscene, hate-filled rant in the WaPo thread that might get me banned from posting there, or even bring me to the attention of the authorities.”
Luckily, I controlled myself. And I’m glad Catherine gave me a chance to vent in a more socially acceptable manner.
But No, it’s not funny and it’s not “gotcha,” Will’s column is an utter and complete OUTRAGE.
Ooops. The reference to the mysterious Catherine is actually the way my outrage-addled brain processed the name Cathleen, the author of the above item.
Sawwy.
About Will and assistance to the disabled. ISTM the someone who objects to government assistance to the able=bodied and able-minded is one thing. Helping the disabled or sick is another because they *cannot* function without a lot of help. So I don’t think it is inconsistent of conservatives to think as Will does.
Where I fault conservatives who think like that is in their unwillingness to help able-bodied, able-minded people who cannot afford the necessities (including health care), or worse cannot find a job because there are none for which they are qualified. Such people need more job training/education, and the whole country would be better off if their talents weren’t being wasted as they are nowl.
“It seems to me, thought, that to imply in any way that Will should be treated with kid gloves is to apply a standard to Will that he himself doesn’t apply to anyone else. Will himself is frequently scathing and does’t hesitate to accuse others of hypocrisy, foolishness, or a while host of other faults.”
…
” I am rather amazed that some conservatives, who are not at all disturbed when fellow conservatives heap scorn on liberals, often claim themselves to feel so wounded by criticism from liberals. They can dish it out, but they can’t take it.”
I recognize and deplore the acid tone Will often adopts. Heaping scorn, an equal opportunity affliction, has the quintessential unintended consequences: it rarely persuades and often hardens hearts. Ridicule-laden discourse and charges of hypocrisy are potent weapons only if the goal is to shut down dialogue. If the goal is mutual understanding, not so much.
I recognize how difficult it is to get beyond proponents’ defects of character to the core of their positions. But surely a point of view should stand on its own and not be discounted solely because the proponent can be characterized as a hypocrite.
David’s comment re: claiming wounds is on point, although I have found this also to be an equal opportunity affliction. People of all persuasions *are* often wounded when their core beliefs are met with contempt. When our deepest loves and loyalties are debunked we often emerge bruised and resentful.
“I am quite sure George Will believes in, and believes he contributes to, the common good.”
David–
I believe that you believe that Will believes he contributes to the common good. I would like to think all Catholics can agree that a man who raises a Down Syndrome child contributes infinitely more to the common good than those would work to support politicians who make it easier to abort them.
Unfortunately, politicians who work to end legalized abortion normally do everything they can to end or cut funding for programs that help care for those born with disabilities and diseases that require assistance beyond what their families can provide.
In my view, this discussion has focused too much on George Will personally and on theoretical comments about sticking it to conservatives or other groups and how satisfying (or not) that is.
Will tells the story in at least two other Will’s pieces about his son that he rejected the option of institutionalizing the baby. In all three, there is a whiff that that anybody who would consider institutionalization lacks basic humanity, particularly since much of the information about Down syndrome the Wills received turned out to be inaccurate.
I think it is possible to applaud Wills for making the decision he did and for writing about the joys of caring for his son. But, to Cathleen’s point and perhaps jfxgills’ outrage, I have to wonder to what extent conservative policies have made it easier for those who are less well off, less well educated, less able to resist pressures from other family members or medical staff, to make the same choice.
It is easier to do the right thing when one has the dough to pay for it.
Jean Raber referred to Will’s 2007 column. Here’s an excerpt from a response to that column by Michael Bérubé. He, like Will, is the father of a son with Down syndrome. Bérubé teaches at Penn State University and is the author of Life As We Know It: A Father, A Family, and an Exceptional Child.
Sorry. I forgot to include the link. Here it is:
http://www.theglobeandmail.com/life/parenting/pregnancy/pregnancy-health/we-still-dont-know-what-normal-really-is/article746031/page1/
“I would like to think all Catholics can agree that a man who raises a Down Syndrome child contributes infinitely more to the common good than those would work to support politicians who make it easier to abort them.”
I don’t think it’s that simple. Will is a wonderful example of a loving father as an individual. But wealthy conservatives who care for their own disabled children but support cuts to programs that would allow poor families to do the same don’t deserve great big accolades, in my view.
That sentence from the column jumped right at me: “Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.”
My immediate thought was: when both parents have full time jobs, how are they supposed to give a baby with Down syndrome the special “stimulation and attention” that they need? If there is no retired (and fit) grandparent nearby, if they can’t afford an at-home nanny, what is the suggestion for providing that “stimulation and attention”?
Making parents guilty for not doing something, while not giving them the means of doing it, puts them in a difficult position.
Claire, parents with clearly special needs children almost always give up their dual income status, unless it is high and stable enough to allow for the hiring of individual help. Indeed, often enough, one parent stays home and the other gets a second job or works crazy overtime. I actually believe that this is the mental calculus that many couples are making at the point they are deciding whether to continue with a pregnancy where significant, untreatable defect has been diagnosed — whether this is something they can or want to do.
Berube and his wife are tenured professors and have much more flexibility of schedule than the average person, and what their son has accomplished with their support shows what is possible, if we had the will or desire to make their experience more achievable for more people.
. . . this era of the casual destruction of pre-born babies.
——–
How smug Will is. How confident in his casual judgment of those who make different choices.
I have a sister with Downs Syndrome – born 1942. I don’t think that there was any “early warning system” in those days. My parents were (very) small business owners and continued to be so while taking care of Karen (to the extent possible considering what was known about DS in those days), most likely with the idea in mind that the doctors were right when they said she would be lucky to live until 13 or 14.
She is coming up on 70 and has outlived both of my parents. They worked their butts off to support her, find whatever was available in terms of special needs education (now much in rural Wisconsin in those days) and, most of all, taught me and my other sister to love her to death as did they.
Jimmy Mac, that is extremely inspiring.