Joan Swirsky
Saturday, Feb. 26, 2005

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  The next day, I took Karen to the pediatrician, who put a tuning fork to her temple and pronounced that she couldn't hear anything. He prescribed antibiotics and made an appointment with hearing specialists in New York City. But when the antibiotics seemed to work and Karen seemed to respond to the sounds around her, the appointment was canceled and life went on.

As the months and years progressed, however, it wasn't clear to me at all that Karen was a hearing child. Sometimes she'd respond to a ringing bell and other times she was deaf to a slamming door. And the fact that she didn't speak was alarming!

Through trips to allergists, neurologists, other pediatricians et al., the "diagnosis" was that "nothing was wrong." Even my new pediatrician said that Karen was a "late bloomer" and that "you shouldn't compare her to your boys."

Finally, in the late 1960s, I took her to a speech-and-hearing center on Long Island, where she was diagnosed as "profoundly deaf." Luckily, surgery proved that it wasn't nerve deafness but rather a buildup of fluid in her eustachian tubes. Teflon tubes were placed in her ears and within six months she was a regular "Chatty Cathy."

But guess what? Karen's hearing wasn't the major problem. Diagnosed with learning disabilities at an early age, she spent all of her school years in special-ed programs. That is when I became – to my everlasting gratitude – intimately familiar with the subculture of the disabled.

I remember taking Karen to Saturday events sponsored by the Association for Neurologically Impaired Brain Injured Children (ANIBIC) in Queens, where children in wheelchairs, children with Down syndrome, children on respirators were offered a respite from their lonely and socially limited lives by volunteers who treated them to a day at the movies or a foray into the exciting world of a subway ride.

Not only volunteers, but also professionals and parents who appreciated the ineffable value of "imperfect" human beings and the degree to which their involvement with them enriched their own lives and that of the larger world that, too often, mistakes high achievement for intrinsic worth.

I remember attending dozens of meetings of the state's Committee of the Handicapped (COH) and what seemed like a thousand "support" groups. And emblazoned in my mind and heart through all of this was the conviction that my daughter's "limited" life was worth every second, every minute, every year of my life in defending her right to have a life.

This is precisely what Terri Schiavo's parents are doing – and have done for over a decade. They are saying that the daughter they cherish, no matter how compromised she may be, is a living, breathing, beloved child who doesn't have to die because of the so-called "wishes" that she left her husband – wishes that have never been documented, signed, tape-recorded … anything.

But now it doesn't seem to be up to the mother who carried and gave birth to her or to the parents who nurtured her every day of her young life or to the friends and family and legions of supporters who continue to value her life. Rather, the decision to end or continue Terri Schiavo's life seems up to her husband of only a few years, who wants to "pull the plug," and to judges, many of whose findings have been favorable to criminals and terrorists!

If, in fact, any judge should deem that Terry Schiavo's very real life should be ended, then every person in our country should be terrified. That ruling would mean that if you or I or any of our children should fall into horrible circumstances that required life-support systems to keep him or her alive, a suspect spouse or a judge who is more an ideologue than a fair and unbiased arbiter could overrule our wishes.

On Friday, a judge in Florida extended a court order to keep Terri Schiavo's feeding tube in place until March 18, allowing her parents, Bob and Mary Schindler, time to get medical tests that might prove Terri has greater mental function than formerly thought. This brief respite from what may be their daughter's cruel death sentence – death by starvation – is the good news. But why on earth should they have to prove such a thing? They love her as she is and value the life that's in her.

Deuteronomy says: "I have set before thee life and death … therefore choose life." They have! Should a court do anything less?

Joan Swirsky is a New York-based journalist and author who can be reached at joansharon@aol.com

Editor's note: