Monday, February 8, 2010

So They Won't Suffer

I wrote this in response to a video article by Radio Free Europe about a journalits' piece proposing "Post Natal Abortions" and the position that children with disabilities ought to be "Finished off" as an act of mercy. If you want to see the piece, it is very inspiring what two women did when they committed to speak out against evil. They managed in Russia to fight the culture of Death and get the government to at least begin the process of treating these children for their very real needs. Miraculous indeed.

I've linked it in the title of this column so you can see the whole thing but suffice it to say, it fired me up. The journalist may have lost this round but we've heard this kind of thinking before. It lingers behind every discussion of abortion of the disabled in the womb. It festers in every legal wrangling over assisted suicide. Ultimately, it is an argument that only the undisabled life is worth living, and that everything less than fully rendered, is to be weighed, measured and ultimately, found wanting.

My grandmother had Alzheimers' disease, and in the end, she could not talk or do much, but if you prayed the rosary, she nodded her head. If you brought her communion, she put out her tongue. The Coco (our name for her) that swam in the ocean and picked out my wedding dress and knew all the words to My Fair Lady and liked an Old Fashioned and broiled lobster still beat within that shell of her body. Trapped by a decaying disease of the mind that robbed her of everything, still, she could rouse herself for the Eucharist. Her struggle was difficult to bear, but because we still watched, because we still waited with her, we were rewarded with these ever so quiet miracles when she would momentarily triumph over everything.

Years ago, I worked with children with severe developmental disabilities. These were non verbal kids with multiple competing issues, cerebral palsy, mental retardation, seizures, attention deficit disorder, autism, any and all combinations. Their lives were hard to be sure with medical needs, physical needs and poverty that often loomed large. Care varied from day to day and kid to kid in the state institutions that sometimes were understaffed. The sum total of their obstacles made life a bit duller than most of us would prefer our own on a daily basis.

But these kids who couldn't talk and couldn't walk and in some cases couldn't feed themselves; they loved being alive! Put them in the pool and even the most withdrawn and disabled lit up like Christmas trees. Slap some cologne on the boys and they'd grin and grin. Brush the girls' hair and they'd preen in the mirror like any teen. Crank up the tunes and you had a dance party like nobody's business. Each one of them opened like a sunflower no matter what the Individual Education Plan said about their hostile or anti social behaviors if given not simply basic needs, but human connections, relationships that mattered however short the time a volunteer, teaching aid or teacher had with the student.

In 1992, an editorial by a County Council woman ran about how some of these children would be better off dead than to suffer as they did. Our principal spoke out against this type of thinking publically. I remember her saying "These children are not dogs to be put to sleep." Her words barely contained her indignation. I admit to feeling fairly righteous myself and wanted permission to take a field trip to park my whole class on the lady's front lawn with signs, "I don't deserve death because you are uncomfortable with my life."

We didn't.

 We went to McDonald's instead at the Galleria.  Some guys from the NBA's Houston Rockets were there getting burgers and stopped to take pictures and hi-five with two of my students who spent the whole rest of the trip laughing and happy for being noticed.

They couldn't talk but they tried to tell everyone we passed in the mall to look at their new Rocket hats and to look at the new Polaroid pictures they had taped to their trays as we pushed them along. Their wheelchairs and exited faces made it almost impossible for people to walk by and not notice. But my students demanded eye contact because they wanted to share their joy. A lot of people tried to pretend they weren't there.  Most of them couldn't.

Not having a disability allows everyone else to ignore one's presence, to not make eye contact and walk on without any guilt or recriminations. No one expects a stranger to make eye contact. When we must hold together a society wherein no one ever experiences discomfort because of the existence of another, we will become very fragile indeed. We will become a nation of extremely touchy islands that pontificate to ourselves, consume ourselves, and eventually die checking our emails for someone, anyone to post a response affirming that they saw or read or liked or hated what we did, wanting ghost acknowledgments for ghost opinions and virtual accomplishments while the real instruments and books and relationships lie dusty and undiscovered.

Now the creeping return of killing them "so as to not let them suffer." is once again on the march as voiced by this initial journalist and paralleled by the public thinking about handicapping conditions being a legitimate rationale for abortion. Disabled children like my son Paul, like kids discovered to have Trisomy 13, or hydrocephallus or cerebral palsy or any number of conditions definable pre-birth, are eliminated via abortion.

"So they won't have to suffer." But the truth of that lie is that we don't want to see. We don't want to be tested. We don't want to bear more than our comfortable controlled lives manage now. We have scotch guarded and helmeted and padded our lives to cover every contingency such that we cannot bear anything outside of our carefully crafted plans well. One day, technology will advance to the point that all disabilities can be known pre-birth. At that point, will any child survive the Rubicon of the womb? How will we love if we will only tolerate perfection? Will we be able to bear the realness of being if we keep deciding that we can bear less and less of what it means to be real?


We don't want to have our spirits exercised or our hearts of stone broken."So they won't suffer." "So we won't have to love." is more accurate.  We would rather feel nothing than the pain of loss; or the fear of having our hearts taken over by another.  One thing is for sure, we will miss out on brighter smiles, better dance parties, warmer softer hearts, Polaroids and hi-fives and the quiet miracles that we cannot linger to see if all who fail to meet the standards of bodily perfection are summarily dismissed via speedy deaths.

And when we decide that we can no longer tolerate anything real, what will we be?

6 comments:

Karen said...

A sonnet to sum it:

To the Mercy Killers
by Dudley Randall

If ever mercy move you murder me

I pray you, kindly killers, let me live.

Never conspire with death to set me free,

but let me know such life as pain can give.

Even though I be a clot, an aching clench,

a stub, a stump, a butt, a scab, a knob,

a screaming pain, a putrefying stench,

still let me live, as long as life shall throb.

Even though I turn such traitor to myself

as beg to die, do not accomplice me.

Even though I seem not human, a mute shelf

of glucose, bottled blood, machinery

to swell the lung and pump the heart -- even so,

do not put out my life. Let me still glow.

SherryTex said...

Thanks Karen! Love it for its fierceness.

Adrienne said...

"We will become a nation of extremely touchy islands that pontificate to ourselves, consume ourselves, and eventually die checking our emails for someone, anyone to post a response affirming that they saw or read or liked or hated what we did, wanting ghost acknowledgments for ghost opinions and virtual accomplishments while the real instruments and books and relationships lie dusty and undiscovered."

Brilliant!

I have a crazy brother who likes to say we treat our animals better than our people. I am always at a loss for words when he says this goofy stuff so we just don't talk anymore.

MightyMom said...

Can you put up a disclaimer Sher?

Just a simple one:
Sarah, DO NOT READ THIS AT WORK BECAUSE YOU WILL SOB UNCONTROLLABLY AND LOOK LIKE A FOOL FOR THE REST OF THE SHIFT

would do nicely.

thanks.


I can add sooo very many stories to your story.

But instead I'll remind us of what it's like to be Real, as told to the Velveteen Rabbit by the horse.....

Anonymous said...

Oh my daughter, you are so real. Thank you. thank you for the memories of Coco, and for your passion for life. Love, Texas Mom

Mary said...

Thank you...Thank you...Thank you...from my severely disabled, seizure ridden, wheelchair bound, cortically blind daughter. Thank you for looking into her eyes and seeing her joy...even if she can't see yours. Thank you!

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