Niceness Kills
by Carol Kennedy of CarolsComments.com
It was niceness that killed Terry Schiavo. "She wouldn't want to live 'that way'", they said. Apparently, she wanted to be starved to death, so they put her out of her misery. How NICE! "Ah" you say, "Carol is right again the liberals and the media have distorted the word niceness and turned it on it's side." You might be thinking, "I know where Carol is going with this essay. Maybe she'll sound like Ann Coulter. You go get 'em girl."
Wrong.
How do I begin? Recently I read a post on a webblog that 99% of the people that I usually agree with out there would think is beautiful. You know the people, you probably are one…I am too. We love God, the Church, our family and country. We go to Mass each week. We pray each day and do the best we can to be good people. So what was my problem with this person's post. Well, in his attempt to convey something special, something nice, he missed the mark. He neglected to recognize the dignity of the human person and understand the real effects of sin in the world.
The blogger's focus was a picture of a young girl at a mass or prayer vigil of some sort about the time of the Holy Father's death. As the author put it, the young girl was "afflicted with Down syndrome". There are many comments following the piece in which the post is praised and stories are related about meeting someone afflicted in the same way. You know what I say?…"Blah, Blah, Blah," Their words are just politically correct platitudes that make us feel good and pro-life but do nothing to promote the dignity of the individual.
How can I be so harsh? Frankly, I think the Holy Father would agree with me because the sentiments expressed subtly diminish the dignity of the young lady in the picture and of others with the same condition.
Where do I begin to put into words the thoughts that have evolved in my brain for the past few years? I know that I have given more thought to this than most and that prior to my personal experiences I would have said some of the same things. But I was wrong then, and most of you are wrong now. So here is my weak attempt to educate and admonish. I apologize if I sound like a ranting mother but I can no longer keep quiet.
Ranting Mom
Let's start with the language commonly used by even the most well-meaning: "a Down's baby", "Down syndrome children", or even "a Downs". What other disease or affliction is described in this way? Do we talk about "the cancer children" ? Or do we say "That family just had one of those cleft lip babies."? Try this little mental experiment for those of you with children. Imagine one of your children with cancer, or diabetes, or deaf. You can probably do it even though it is difficult. Now try to imagine one of your children with Down syndrome. Can you? I doubt it. More than likely you have to imagine an as yet unborn child, an imaginary child who looks and acts retarded.
You see, most of us equate the disease commonly known as "Down syndrome" with the child…as one friend put it we treat the condition like a breed. The disease "Downs" trumps the "person" with the disease. We tend to think of a child with Down syndrome as more closely related to other children with the same condition than they are to their own families. "Did you hear the Smith's had a Down's baby?" According to the language used, the child isn't a "Smith" or a even a little girl, she is a "Down's baby".
This type of language results in the diminishing of the individuality of the person who happens to have Downs Syndrome or the medical condition called Trisomy 21. Trisomy 21 is an extra 21st chromosome which causes some common characteristics that are known as "Down syndrome".
Judging a book by its Cover
Let's move to the problem of expectations. The author of the article spent a lot of time listing the things that this young lady would not do. He was trying to make a point that a life that does not have worth in the world's eyes, still has worth in the eyes of God. However, he therefore assumes that this person's life cannot have worth in the world's eyes. He even assumes that she cannot learn the prayers of the rosary. How little we all know about the potential of a child afflicted with an extra 21st chromosome! What if this young lady happened upon this article as she surfed the net and read it herself? How would she feel?
"But", you say, "she has Downs!" And you have fallen into the trap. You have judged a book by it's cover, assumed because of the way a person looks that you know her abilities, the extent of her potential.
We all make ourselves feel good because we talk about how precious her life is, how "special" she is, she is so loving, she is so happy, we say. But we don't see her! We see first her Down syndrome and then we judge—if we buy into the culture of death our judgment is "what a waste"; if we buy into the culture of life our judgment is "how precious". But we still do not see the person behind those features.
Have Downs–go to Heaven
There is one final indignity that we heap upon the child with Trisomy 21. You heard it said, and you may have even said it yourself. I know that I once did. "She will go straight to heaven. She is much holier than the rest of us. She isn't capable of sin." And we are supposed to think this last statement is a good thing! If God had intended us to be incapable of sin He would have made us all that way.
But He didn't. He made us with a free will so we could freely choose heaven and then He declared us GOOD. Make no mistake– God made us capable of sin. He intended us to look evil and good in the eye, know the difference and choose the good. If a person does not have the intellectual ability to reason, and therefore cannot choose between good and evil–that is a disorder–that is a result of sin in the world–that is not a good thing!
God is Good and Sin is Bad
It is God's plan that we will all choose heaven, choose the good, choose Him. He allows evil things to happen that get in the way of a person making this choice (such as the replication of the 21st chromosome), but it is not His plan. In other words, God did not "make" that young lady "that way". Sin did, evil did, the devil did. God can bring greater good out of her affliction, but the disease, is not, and never will be, a good thing!
As you may have guessed I have personal experience with Trisomy 21. I have a three year old afflicted with this disorder. She is a beautiful, bright little girl who loves her brother (even when she is beating up on him), plays baby dolls and catch, says NO loudly when she doesn't want to do something just like any other three year old. She also reads about 150 words, can count to 20 and recognizes the numbers up to 29. She knows her colors and shapes. She can make the Sign of the Cross and can say her prayers (sound like any three year old you know?).
Each and every moment of the day she picks up her cross and must carry it. She fights the effects of the extra 21st chromosome, especially the results of not being able to metabolize proteins well—namely low muscle tone. Muscle tone affects her speech, her gross and fine motor skills, even her appearance. It causes people to underestimate her at every turn.
The sad thing is that in my world where I am surrounded by faithful Catholics, a good extended family, terrific friends, and excellent priests, there are relatively few who actually see HER and not the label. One of the biggest regrets we have as a family is telling anybody our daughter has Trisomy 21 because she is now, in the eyes of the world, our "Down syndrome daughter". And worst of all, this brings out the "niceness" in people.
I can't begin to tell you what it feels like to have complete strangers or even friends comment on the look that they see, right in front of my daughter, as if she doesn't understand. We don't tell her she has Trisomy 21, not because we are avoiding reality but rather because we are embracing it. We want our daughter to have a typical life, just like any other kid. And we believe that this is largely possible. However, we know too well that her biggest obstacle in the world are the preconceived ideas of the general public, and even the medical community.
It breaks our heart when we talk to folks who immediately tell us who they know that have children with Trisomy 21 and suggest we meet them. It is almost as if they don't want her playing with their own children, but think she would be better off with "her own kind". We know this isn't a conscious thought, but the result is the same. Imagine someone said to you, in front of your child, "I notice little Johnny is chubby. We know another family with a chubby kid, maybe the boys can play together. We'll introduce you."
Stop, Stop, Stop All the Niceness!
Being pro-life and embracing the culture of life is more than having a bumper sticker on your car, protesting at abortion clinics, or political activism. It also means learning how to treat every human being as a unique individual loved by God for her own sake. It means not relying on "nice" platitudes and clichés, but believing in the unlimited potential of every human being. It means knowing what we are talking about before we presume to speak. It means respecting the privacy of persons with an obvious disability…they (or their caregivers) may not want to speak to you about their cross. They may just want you to forget it and treat them like anyone else.
I began this article talking about Terri Shiavo. One thing that many in the pro-life world said often was that you never know what sort of recovery she might make with the proper therapy and modern techniques. And that is true. Terri's potential was highly underestimated. And it is also true, as I stated in another article, that her value has nothing to do with her potential, or her abilities. However, we wouldn't be truly pro-life if we didn't do all we could to help Terri, or anyone, reach for their highest potential, to reach for the stars. It is
So, if you happen to see me and my daughter in the grocery store, or at Mass, and a nice comment pops into your head about people with "Down syndrome" or you remember that you know someone afflicted the same way, please keep it to yourself. Don't kill her spirit with "niceness" that is really patronizing. Don't make her feel like an object by talking as if she couldn't hear you. Instead, you can say a silent prayer for us. And while you are at it, pray especially that when she graduates high school she can decide between Notre Dame or Stanford….. How's that for blowing that Down syndrome label right out of the water?!
In 1997, Carol Kennedy received her MA in Theology with a certification in Catechetics from Franciscan University. She spent the next year teaching catechetical methods at the university. She then moved on to Ann Arbor, Michigan where she worked with the Sisters of Mary, Mother of the Eucharist as the DRE of the Spiritus Sanctus Academies. While in Ann Arbor she met her husband, Jim Kennedy, on the Ave Maria Catholic Singles website. Carol now lives in Northern California with her growing family.
