Rod Dreher

Rod Dreher


The holiness of Down syndrome kids

posted by Rod Dreher

A Philadelphia reader passes along this deeply moving essay by a Catholic mother of a Down syndrome child, responding to some vandals who stole photos of Down children from a website, and reposted them making fun of the kids and their condition. Excerpt:

This attack was also painful because of the callous lack of understanding of what these photos stand for. Accomplishments in this particular world are hard won. They represent hours of sleepless nights rocking babies who struggle to breathe during bouts of pneumonia and other respiratory infections. They represent long hospital stays, emergency room visits, and anxious hours spent in surgery waiting rooms. They represent days, months, and years of physical, occupational and speech therapy, conferences with school officials, and the effort to make others understand these children’s unique gifts. Even the simplest everyday activities can be a real triumph for children and parents. The amount of love, suffering, pain, and prayers that go into the moments captured in the posters is probably more than many people go through in a lifetime. These children overcome circumstances and adversities that would overwhelm most adults.

More:

But after seeing the online ridicule of Down Syndrome children, I wonder whether the deepest sorrow that pierced Mary’s heart was not the physical suffering of her son, but the cruel taunts and mockery to which he was subjected. It must have been bewildering to her that his tormentors could not see that all the life and goodness, truth and beauty in her Son. Of course our children are not messiahs. But a Holy Cross Priest at Notre Dame reminded us last week that those of us who care for individuals with cognitive handicaps stand on holy ground. Knowing a child with Down Syndrome is like getting a small glimpse of the divine; original sin has been cleansed by baptism, and their souls are barely touched by actual sin. And that’s why we feel that when they are shown disrespect, something innocent and holy and sacred has been profaned.

A few years back, my friend Prof. Ginny Arbery wrote a beautiful tribute to her daughter Julia, who has Down syndrome. Excerpt:

Julia’s life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom.
I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of “all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness.”
We were all working for that fullest expression of life and happiness for our babies. I thought about the “prudent” mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child.



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Zoetius

posted March 19, 2010 at 9:07 pm


Don’t sanctify disease. Don’t consecrate illness. People with illness and disabilities are human, fallible, and can be downright ugly.
Just like the rest of us.
It is good to recognize that hardship can be transformative but it does no good to place a group of people on a pedestal. You will only be disappointed, and only blind to the truth.
It does nothing to protect people with disabilities from abuse and offers no motive to be better, to shed the sick role.
Its true for Downs, cancer, priests, and politicians. Pedestal are only places from which you can fall.



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Irenicum

posted March 19, 2010 at 9:54 pm


First off, to Zoetius: I agree that no one is exempt from the human condition. I also agree that we can too easily give ourselves over to a romantic notion of intrinsic innocence. But I would critique your argument against sanctifying disease. Of course in one sense I would agree (in that we shouldn’t elevate disease as itself an intrinsic good), but God has chosen to work through the broken, the weak, the diseased, in order to show to those who think they’re OK that they are in fact in the same boat as the obviously deformed, disfigured and diseased. We see that first off in God’s choice of Israel from among the nations and most explicitly in Christ’s ministry among the marginalized. He chooses counter-intuitively to our natural impulses in order to show us a better way. God, it seems, has a preferential attitude towards the “poor” in whatever form they may take.
Now to what I originally wanted to post: I worked for almost ten years with the developmentally disabled in NYC. I was blessed beyond measure by my interaction with my clients (other terms apply depending on where you live. Sometimes it’s consumers, patients, etc. The terms change according to the political environment). I still miss them. I learned from them more of what it means to be human, with all of our impulses and drives, than I have from most theological or psychological textbooks. I saw my own impulses and drives shown straightaway in their direct actions that my cognitive advantage so easily obscures.
In fact, it was my interaction with the physically and developmentally disabled (or other-abled) that made me even more pro-life than I had previously been. In most areas I’m quite progressive or left, and my regard for the “least of these” itself drives my concern for the absolute least of these in the world’s eyes. So yes, I am a better man, a better human being, and a better Christian because I have known and been blessed by those God has chosen to share this limitation and illustration of grace. And as an aside, most of my clientele have lived very happy satisfied lives in every sense. There’s something there we can learn from I think.



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Andrea

posted March 19, 2010 at 11:34 pm


I think there’s something a little condescending about the assumption that a child with a developmental disability is “barely touched by sin” as if intelligence lets in evil. A kid with Down Syndrome is just a person, as capable of bad as of good, albeit perhaps not as effective in committing the negative as someone whose sarcasm hits its target. They have intrinsic value as human beings and making fun of them is as unkind as it would be to lambast someone for being fat or socially awkward or some other difference. But having Down Syndrome doesn’t make a kid a saint.



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jestrfyl

posted March 19, 2010 at 11:35 pm


The year after I completed seminary but before I accepted a call to a full time pastorate I worked as a teachers aide for multiple-handicapped teens. In that year I learned more about grace and faith than I had in the three years of seminary and quarter of Clinical Pastoral Education. I am ordained in what most people would say is a non-liturgical denomination (the UCC). But through the Downs folks in our program I learned the value of liturgy. The folks from Roman Catholic homes worked hard at learning the catechism. The week before their exam it was tense. The teachers eased off a bit on the classwork and homework just so they folks would not get overwhelmed.
Some of them or their parents knew about my professional training, though they were not familiar with our particular shade of faith. So I was asked to help after school as some of the kids struggled with the memorized work. As I helped tutor them I saw how important knowing the liturgy was for them to feel part of the entire community of faith. The Monday after their first Communion was a day of great pride and the flush of success filled everyone with joy. The folks KNEW their prayers and could answer the key questions. It was indeed amazing. I understand that a couple of the higher functioning folks were able to serve as acolytes.
They may not have caught all the nuances of the theology or were not particularly interested in the profundity of the Christology. But they knew they were now full participants in their faith community. To this day I cannot go through the Sacrament of Communion without thinking of these folks and the meaning that covenant has for them. It has been 25 years since I worked with them, but their faith and insight and Spirit has bonded me with them not only to my foundation but to the footings of my ministry.
No mindless internet-vandals or cyber-morons can take that sense of unity and pride away. My guess is they were feeling so inferior that they thought it would make them “taller’ to stomp on the Downs folks toes. All it does is remind people of how amazing Downs folks are and what grace and strength they have. That is not true of the folks who abuse, taunt, and malign them.



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Quiddity

posted March 20, 2010 at 3:00 am


Those people who stole the pictures and made fun of the kids are no good bums.



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Your Name

posted March 20, 2010 at 4:59 am


To Zoetius:
What happens to you if someday, you find yourself in an accident
that might rob you of things today that you take for granted –
your arms, legs, mind, etc? Perhaps others will show the same lack
of compassion for you as you verbalize toward children with disabilities. As Jesus said, speaking of children, “Forbid them not
to come unto Me, for of such is the Kingdom of Heaven”. Also, the
Bible teaches that with what you sow, that you shall also reap. How you treat others, will be how you will be treated also.



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public_defender

posted March 20, 2010 at 7:52 am


In some ways, I actually feel more sad for the kids who are making fun of the children with Downs Syndrome.



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Kim

posted March 20, 2010 at 8:53 am


I have a 21 year old son who was born with a severe heart defect, and suffered damage to his brain processing when he was an infant and almost died. When he was about 7 he was also diagnosed with moderate autism. One day I was teaching my younger children the Lord’s Prayer, and I asked Dylan if he could help them out. He recited the whole thing, even though I never taught it to him. He goes to church with us every week, and going to a liturgical church was the best thing I ever did for him. If it is comforting to me as an “able-minded” adult, it is absolutely essential to him. He has taught me how important it is that God never changes.



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public_defender

posted March 20, 2010 at 9:18 am


Let me explain my comment above. People with Down Syndrome have a disability to deal with, but the kids who taunt kids with Down Syndrome have, in a way, a much deeper set of problems.
On another point, as others have pointed out, people with Down Syndrome are full human beings, not beings for which “original sin has been cleansed by baptism, and their souls are barely touched by actual sin.” To me, that statement demeans the humanity of kids with Down Syndrome.



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NancyC

posted March 20, 2010 at 10:48 am


Anyone who posts pictures online is taking calculated risks that some hacker somewhere will steal them. If you have children and you post their pictures on line, you have to be aware of this. And while I sympathize with Catholic Mom’s pain, wouldn’t every parent, irregardless of their child’s ability or disability, feel the same pain at seeing their child’s photo stolen and used to ridicule them?
Also, as a teacher of students with special needs, I too find the “holy ground/holiness” analogy disturbing because it separates children with disabilities from their peers. Children with disabilities tend to communicate in ways that are atypical. Interpreting their atypical expressions as holiness, while noble in intention, does little to help increase inclusion and normalcy. Instead, it’s another way of making children with disabilities different from their peers.
As a person of faith, one would hope to see God everywhere and in all things, in all people -with and without disabilities. Truly, think how different our interactions with each other would be if we looked first to see God in everyone we meet, know, work with, and love -irregardless of the capacities and capabilities. What if we treated everyone we met as holy? Wouldn’t that be something?



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dangermom

posted March 20, 2010 at 10:53 am


For those interested, I’d recommend “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives” by Kathryn Lynard Soper. There’s a second volume out now as well.



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stari_momak

posted March 20, 2010 at 2:22 pm


The problem I have with this post is that it comes * close* — not quite there but close — to idealizing what is a severe handicap. Or culture doesn’t lack for the ‘normalizing’ of what is really tragically abnormal.
It is better to be of normal intelligence, better still to be a high intelligence.
It is better (within limits) to be tall than short, attractive than unattractive, naturally diligent than naturally lazy, fast than slow, strong than weak, attracted to the appropriate sex than the same sex, attracted to those of appropriate age than children.
To pretend the opposite of any of these somewhat biologically determined characteristics is willful ignorance. The Nazis erred in one direction, but we err in the opposite.



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TheBiboSez

posted March 20, 2010 at 3:44 pm


My Dearest Beloveds –
When it comes to the holiness of “special” children, what the Bibo Sez is quite clear:
“Whosoever he be of thy seed in their generations that hath any blemish, let him not approach to offer the bread of his God. For whatsoever man he be that hath a blemish, he shall not approach: a blind man, or a lame, or he that hath a flat nose, or any thing superfluous, Or a man that is broken-footed, or broken-handed, Or crookbacked, or a dwarf, or that hath a blemish in his eye, or be scurvy, or scabbed, or hath his stones broken…Only he shall not go in unto the vail, nor come nigh unto the altar, because he hath a blemish; that he profane not my sanctuaries: for I the LORD do sanctify them” (Leviticus 21:17-23).
Indeed, and that is what the Bibo Sez.
Bless you, and AMEN!



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Sybil Y. Reisch

posted March 20, 2010 at 4:50 pm


Dear TheBiboSez, Thank God that Jesus turned that around when people asked who had sinned that this man was born blind, and He said, “It was not that this man sinned, or his parents, but that the works of God might be made manifest in him.” And Jesus healed him. (John 9: 1-7) God’s works are amazing in the children with Down syndrome — they love unconditionally, as Christ loves. Although they are not holier than any other child God created, they teach us patience, and much more. I wrote the story of our son Jeff, who lived with Down syndrome for 27 years, and our joys and challenges as a family. Check out “Journey With Jeff: Inspiration for Caregivers of People with Special Needs,” by Sybil Y. Reisch on Amazon.com



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Zoetius

posted March 20, 2010 at 9:21 pm


Your Name,
You have made several false assumptions in addressing my post. You neither know me, nor my family and friends. You do not know what we have gone through, what we or going through, or what we will go through.
Your patronizing and condescending assumption that I take any of my faculties for granted is capricious. You do not know the people behind the pixels.
People with disabilities are people, they are neither saints nor holy men and women, just people like you and me. Wondrous things may be worked through any of our lives, but the content of this post is in error as it presents the behavior and inner lives of those with disabilities as somehow purer, better, and closer to God, than the rest of the herd. It’s not True. It’s misleading, and it sets ups false and disappointing expectations, that these people, real people, cannot meet.



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Father of Tommy

posted March 20, 2010 at 10:34 pm


It’s a little precious in our culture, don’t you think, for some here to object that it is unfair to people without disabilities for someone to draw attention to the value and gifts of those with them.



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JLeJeune

posted March 20, 2010 at 10:57 pm


Given what Catholic mom says about “hours of sleepless nights rocking babies who struggle to breathe during bouts of pneumonia and other respiratory infections….long hospital stays, emergency room visits, and anxious hours spent in surgery waiting rooms….days, months, and years of physical, occupational and speech therapy, conferences with school officials…”, it seems extraordinarily uncomprehending to suggest that she “comes * close* — not quite there but close — to idealizing what is a severe handicap.”
NancyC, why do you think it is a competition as to who is holier than whom? How do you know that the Catholic mother doesn’t see holiness in very many persons, places, and circumstances, but having a child with Down Syndrome simply prompted her to reflect upon the holiness, that is the image of God suffering, of a person she cares for daily? To say there is holiness everywhere is abstract, and easy to say. To see it in the person you care for daily, disabled or not, is concrete. As a teacher of students with special needs, one would think you would see that.
But is it all that surprising in our culture, where “retard” is a term of abuse, that the suffering of those with Down Syndrome that one deals with concretely and daily might bring about reflections about another mother watching her son suffer taunting and abuse? What terms do we take from people without disabilities to abuse and insult them or others? “Basketball star?” “Honor student?”
And if you think there are no differences in our cultural attitudes toward children with Down Syndrome that could use a bit of reflection, correction, and emphasis about the holiness present, why are 90% of children diagnosed in the womb with Down Syndrome aborted? You can bet that figure includes lots of Catholic and “pro-life” parents. Does that just reflect the attitudes of the parents, or might it be a result of what the parents have soaked up from their culture. Most other abortions take place because of the circumstances of the parents, and their attitudes about having a child here and now; it is by and large about them, and not the child. In normal circumstances, if it were more about the child, perhaps the abortion wouldn’t take place. They do not take place because of the judgment “this child will not be good enough because of what it is.” The way in which a child with Down Syndrome is unwanted is very specifically about that child. You see only those few children with Down Syndrome who make it out of the womb. As someone who wants to see more “inclusion” and “normalcy”, one would think that you would welcome reflections that suggest that children with Down Syndrome are at least as holy as anyone else in a culture that by and large kills them, all the while divinizing the achievements of those without disabilities.
And if you think in this culture emphasizing the gifts and holiness of children with Down Syndrome is not a point worth making because it is somehow slights and is unfair to the kids without disabilities, just think of all the other children in the near future who will be killed before they ever get to your class because of a condition they have; the genetic testing for all sorts of conditions that is coming down the line is going to put you out of a job.



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Dan LaHood

posted March 21, 2010 at 9:46 am


JLe Jeune,the best I’ve read on the subject. Thanks



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Your Name

posted March 21, 2010 at 2:41 pm


“Perhaps others will show the same lack
of compassion for you as you verbalize toward children with disabilities. ”
It’s not lack of compassion to say that children with disabilities are humans, like the rest of us, with the same potential for holiness and fallenness. What is offensive is to treat them like they are “here” to “be examples for us” or some sort of invariant group of holy entities with no individual identity. They are human, and there is no offense in that.



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NancyC

posted March 21, 2010 at 4:33 pm


JLeJeune, when I said as a person of faith, it was my intention to indirectly include myself. Words fail to convey how with fear and trembling I confess my faith because to say I believe is an awesome and terrible thing. Most especially as I constantly and consistently fall down in my faith. But, I am not here to talk about my faith or how my faith affects my work. I am only here to advocate for those I work with.
I am advocating for inclusion and normalization. My argument is against separating people with disabilities and ascribing to them super powers or super failures. If society can include people with disabilities with out making them super heroes or super objects of ridicule, then my students will have the opportunity to contribute and their contributions will be valued. Furthermore, those contributions will be valued because they are normal, worthy and equal, not because they inspire guilt or pity.
Holiness only means something to those who believe in the concept. I can’t advocate for my children based on that because I live in a secular society that often derides the concept of holiness as much as it derides the concept of retardation. I can’t change those things. I can, though, advocate for my students to be included and to be valued as equal to their peers. I can, with administrative support, make it normal for children with disabilities to learn side by side with their typically developing peers. I can teach those children who are typically developing that to be disabled is just a condition, sometime temporary, sometimes permanent, but no better and no worse than being not disabled. I can teach them that disability is not the definition of identity. I can inspire typically developing students to use their creativity to help those who have disabilities, because it helps create a more just and equal society. I can teach my typically developing students that we will, hopefully, all grow old and need help and support; the kind of help and support that children born with disabilities need at a young age. Those are the things I can do.
What those typically developing students will do with what I and my students with disabilities will have taught them is not for me to forecast or predict. Though, it is my hope that if the next generation sees their peers with disabilities as equals, if they see disability as a condition that we will all at some point in our lives face, then, hopefully, they will no longer consider it appropriate to ridicule people with disabilities, or exclude them, or not support them, or when the time comes to raise a family, abort them. That is my hope.
And for the record, I would be happy to lose the title of special educator and just be a rockin’ good educator. Hopefully, there will always be a need for those.



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Zoetius

posted March 21, 2010 at 5:35 pm


No, Father of Tommy, it is unfair to the people with disabilities, disease, and illness and their families.
It is enough to bear the disease and more than crippling to bear societal expectations of christlike demeanor and forbearance.



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Siarlys Jenkins

posted March 22, 2010 at 12:27 am


I come down on all sides of this question. To ridicule any child, or the efforts of their family to raise them and stimulate the greatest response they are capable of, is cruel, despicable, uncalled for, and entirely unnecessary.
On the other hand, there is NOTHING particularly or peculiarly holy about a Down’s Syndrome child. They were born with their genes improperly aligned, their capacity is frightfully limited, and I have complete sympathy with any prospective parent who decides, early in pregnancy, no, that is not the genetic material I want to grow my baby from, I’m going to take this out and start over.
Not all mothers make that choice. Some choose to carry their pregnancy to term. That is their choice. There is no “duty” to do so. Either choice can well be a compassionate one, from the viewpoint of the woman making the choice.



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Siarlys Jenkins

posted March 22, 2010 at 12:28 am


come down on all sides of this question. To ridicule any child, or the efforts of their family to raise them and stimulate the greatest response they are capable of, is cruel, despicable, uncalled for, and entirely unnecessary.
On the other hand, there is NOTHING particularly or peculiarly holy about a Down’s Syndrome child. They were born with their genes improperly aligned, their capacity is frightfully limited, and I have complete sympathy with any prospective parent who decides, early in pregnancy, no, that is not the genetic material I want to grow my baby from, I’m going to take this out and start over.
Not all mothers make that choice. Some choose to carry their pregnancy to term. That is their choice. There is no “duty” to do so. Either choice can well be a compassionate one, from the viewpoint of the woman making the choice.



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Jesse dziedzic

posted October 20, 2011 at 12:02 pm


I fully agree completely..



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Firewire Ports

posted December 5, 2011 at 3:08 pm


What a really joy of a piece of writing!



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