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How Accepting Down Syndrome Frees Everyone To Be Loved When We Become A ‘Burden’

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In “I Would have Aborted A Fetus with Down Syndrome. Women Need the Right,” Washington Post columnist Ruth Marcus writes “selfishly” (her words) about what even some of the heaviest pro-choicers would prefer not to touch. Scanning the comment section of Marcus’ declaration, I was not surprised to see so many other women joining in agreement.

After all, the abortion rates of children with Down syndrome are close to 100 percent. If one woman can speak so candidly, the rest must be thinking it. In a world where the “r-word” is taboo and commercial zoning laws spare no expense for wheelchair accessibility, it might seem to many that Marcus has gone a little too far.

But “too far” in what sense? Saying what we all already think but don’t dare to say? So, thank you, Ms. Marcus, for being so candid and putting all platitudes aside. I too will now be selfish.

Maybe the pro-life movement’s treatment of this year’s adorable Gerber baby, the first with Down syndrome, was beside the point. The baby is cute, yes. But one does not keep a child with Down syndrome because he or she will be cute. As many know, the cuteness will often get lost in the frustration that always accompanies a Downs child.

There is hair-pulling and food-snatching and severe motor skill impairment. Marcus especially notes the IQ deficits that range between 35 on the moderate side and 70 on the mild side. This goes to the heart of her objection to having a child with Down syndrome: few will be able to live on their own or be financially independent. As Marcus says, “It is life-altering for the entire family.”

Let’s All Be a Little More Selfish About Weakness

Yet maybe more women need to be a little more “selfish.” As a young woman with only two pairs on chromosome 21, I “selfishly” oppose Marcus’ call, because Marcus and her less-honest disciples are casting a far wider net than they realize.

Do they understand that in objecting to the burden of one who is financially and intellectually dependent they are making a definitive judgment on the worth of all others who, for whatever reason, cannot stand on their own two feet? Our treatment of the “burdensome” will become our treatment of everyone. Ask my mom, for I, too, am a “burden.”

The future is a very scary thing, especially right after college. I graduated in May, and with my tail between my legs moved back home without a semblance of a plan. My IQ is high, but I am, all the same, financially dependent and living at home for the foreseeable future.

I’m not alone. We post-college “dependents” feel shame in the presence of peers who appear to have control over their finances and lifestyle. We suspect that our worth would go up in their eyes if we too were financially independent.

Ask Not for Whom the Bell Tolls

I have grown up in the constant company of children with Down syndrome, such as my god-brother. Let’s call him Sam. He was born when I was five, so I have had the pleasure of growing up with him.  I saw what he cost his family: open heart surgery, therapists, special education, numerous tutors and worries about his future.

Marcus is right about Sam’s limitations He has far greater needs that demand a higher level of attention from his parents, siblings, friends, and teachers. Tasks that I might find easy were very difficult for him.

What Marcus and her cohort fail to see, however, is that these weaknesses are also strengths. By virtue of Sam’s “weaknesses,” he is never alone. It’s enviable. Could it be that we are not serving the burdened, but that they are serving us?

In a world where we treat independence as the highest of human virtues, few families stay intact past high school.  Not my god-brother’s. He is the center of a life that will continue in his home for as long as he is a “burden” on his parents. I wonder who will take care of Marcus after her successfully and financially independent children have left the nest to pursue time-consuming careers.

These “selfish” women might desire their right to be free of “burdens,” but they don’t realize that they are cutting off the very branch they are sitting on. One day, they will be the “burden.” It’s those like Sam, integral to our society, that give us permission to be weak. Because of what they’ve taught me, I’m reclaiming my own right to be a burden also.