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COMMENTARY:GENESIS: VOLUNTARY AGENCIES(This is the first in a series of columns about the evolution of the service-delivery system for people with disabilities.) By P.A. Figueroa, Jr. Once upon a time, many decades ago, there was a world without voluntary agencies and telethons. But one day, in a house somewhere in the suburbs, a child was born with a strange malady. The young parents had never seen anything like it before. No other child in their community was beset by the abnormal condition. They asked their doctor to make their child “normal.” They wanted their child to look like the other children in the community. Sadly, their doctor said there was little he could do. Moreover, there was nothing anyone could do. The doctor advised the concerned parents to drive their disfigured child to the large hospital center on the outskirts of town and deposit him there, to be taken care of until his last miserable day on earth. Confused, the parents rejected the doctor’s proposal. They were determined to find a doctor who would make their offspring normal, or at least close to it. But before they left, the doctor told them of the Joneses’ child on the other side of town. The parents were told that that child was born with a congenital condition similar to their own child’s. The doctor said that those parents also rejected his recommendation and now were dealing with “a little secret,” a demonstrably “crippled child,” a “not ready to be seen in public child.” Bewildered and with nowhere to turn, the young parents decided to look up the Joneses and speak to them. At first, the Joneses were reluctant to admit they had “a little secret.” They refused to speak of the child they kept inside the house at all times. The shame was worse than death itself. In this perfect world of finely trimmed lawns, delicately planted flower beds, and spotless white picket fences, an imperfect child was — well, unspeakable. But shame is a two-edged blade that cuts both ways. So the Joneses confided in the young parents about their secret child. The similarities were so striking that they decided to meet to exchange information, especially because the Joneses had several more years of experience dealing with the situation than the young parents. The Joneses shared a great deal of information with the young parents, who learned of other families with similar “little secrets”: children with birth defects! It was almost like an epidemic: half a dozen otherwise healthy couples had been “blessed with special children.” What biblical challenges did these children represent? Surely, it was an act of God. Or was it? But secrecy and shame were not the answer for many of the parents meeting as a support group. They found strength in numbers, shedding their shame for a cause. They wanted to find the cure, the magic bullet, the genetic problem that caused these birth defects. They wanted their children made normal through “rehabilitation therapy.” They wanted their children to go to school like their normal peers. They needed answers from the medical establishment. And, subsequently, they set out to find the best medical minds they could in their field, the best physical therapists, social workers and equipment. The culmination of all these things gave rise to the first voluntary agency. To no one’s surprise, these were duplicated everywhere. Like crabgrass and dandelions, these charities, as they became known, soon dotted the landscape. Soon you could not see the lawn for all the dandelions. And like dandelions, the bright yellow exterior is harmless, but the roots are lethal to lawns and flowers. Like tentacles that kill, they choke the water and life out of lawns, shrubs and flower beds. Unfazed, the parents began to hang shingles in hospital backrooms. But the best medical minds of the times could not answer their questions except with the proverbial, “We need lots of money to do research to make your child normal or as normal as possible!” Hence, the pity industry was born. “Look at us, we’re walking, look at us, we’re talking, we had never laughed and talked before…” went the song. The telethon, from the words “television” and “marathon,” became the vehicle for raising money, and educating the public about birth defects. “Your dime.Your dime will guarantee that your next born will not look like this!” proclaimed the telethon hosts. “We need money for research, for medical care, for recreational care, for orthopedic equipment, and lots, and lots more. Your dime is your insurance policy that your next child will not look like Timmy.” (It was a plea for dimes, known as the March of Dimes, that is considered the prototype of charitable organizations. Begun as the National Foundation for Infantile Paralysis in 1938. This national voluntary health charity was co-founded by President Franklin D. Roosevelt. It was created to defeat the epidemic disease polio.) The modern-day telethon also created a cottage industry, “the pity peddlers,” composed of over-the-hill, washed-up celebrities clinging to the hope of jump-starting their fading careers. They became hosts to annual “pitythons.” Like a beauty contest to a liberated woman, the telethon was the same degrading, dignity-mauling exhibition for people with disabilities. (For more go to: http:// www.tvparty.com/embarrass.html ) ****** NEXT ISSUE: REVELATION. Patricio Figueroa, Jr., is an artist, advocate, author, and the first director of the first ILC in NYS, CIDNY in NYC. |
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