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Embracing our Special-Needs Children: Special Delivery

Eytan Kobre

Forty years ago, a woman who gave birth to a Down syndrome baby was encouraged to give up her child and hope for better next time around. Today, parents faced with mentally or developmentally challenged children have Medicaid vouchers, a plethora of services for special needs children, and an array of camps that teenagers fight to work for. Does acceptance make the challenge easier?

Thursday, September 27, 2012

 Brooklyn, 1977. A young, frum mother of three lies in a hospital bed having just delivered, after a routine pregnancy, a bright-faced little baby boy. A cause for celebration, no? But … the baby has an extra copy of chromosome 21. That may sound like a technical and irrelevant detail, but it means he has what is known as Down syndrome, named after John Langdon Down, a 19th century British physician who discovered that the existence of that extra genetic material results in a very specific form of mental disability. The most obvious thing about individuals with Down’s are their Oriental-like facial features, but it often comes along with other health issues, such as congenital heart problems.

But back in the late 70s, when Hashem sent this precious little neshamah, Moshe Gaffney, into the world, these kids were known mostly by a far more ominous-sounding name – Mongoloids. The name said it all: strange, other-worldly, almost — G-d forbid — like a mutation of sorts.

And as Moshe’s mother, Pnina Gaffney, recovered from a difficult delivery by Caesarean section, the pressure on her to simply leave her baby in the hospital for adoption mounted. It came from all sides, from the attending staff doctors (although not from her own pediatrician), from nurses, and from social workers. Mrs. Gaffney recalls a doctor telling her, “This was a mistake; but don’t worry, in another year or two, you’ll become pregnant again and have a normal baby.”

“They had already lined up a Protestant couple to adopt my baby. They simply assumed we wouldn’t want to take our baby home and that they were doing us a favor by finding us a couple willing to adopt him,” Pnina Gaffney remembers. “A social worker came into my hospital room, sat down very nicely and proceeded to give me a litany of about 15 things my child would never do, and so why, she wondered, would we want to do this? It would wreck my marriage, my other children would never forgive us for this, it would ruin their futures, we’d never get shidduchim for them.

“So I’m lying there and I’m at my weak point and I’m thinking, What am I getting myself into? This could really, really be devastating. I just wanted to jump out the window, because it felt like this was the end of the world. That’s how it appeared to us. I remember feeling very lost and alone.”      

Looking back, Mrs. Gaffney recognizes how in fact her C-section delivery was a blessing. That necessitated a longer recuperation period in the hospital than she otherwise would have had, and as the days went on, she says, she developed the inner strength to buck all the pressure and decide that to simply sign her name and walk away from the “problem” was something she couldn’t possibly do. “It was such a frightening scenario, very, very traumatic. And my poor husband, he should rest in peace, he started to buckle under. He was really, really frightened because there was no literature out there about Down syndrome. This was the late 70s, at the time of the Willowbrook Decree, and all they gave us to read was literature with these horrible pictures of that place that implied that nothing could be done with these kids, that they could never make any progress but would remain forever at the level of a two-year old.” 

“Willowbrook” is shorthand for theWillowbrookStateSchoolin theNew York Cityborough ofStaten Island. Originally designed to house 4,000 residents with various mental disabilities, by 1965, it had a population of 6,000, the largest such institution in the country. In the early 1970s, a series of media exposes on the horrific reality of the place — most famously by investigative reporter Geraldo Rivera — pointed to crowded, filthy living quarters and abuse of residents by staff members, which led to a class-action lawsuit and a settlement requiring improvement of the living conditions there. The institution eventually closed in the mid-1980s.

But this scandal also shined a broader spotlight on how mentally challenged individuals were being neglected in society, with little to no effort being made to help them reach their highest potential and take their rightful place in their communities to lead productive, happy lives. Out of the horrors of this saga came the Willowbrook Consent decree in 1975, followed by a further court order in 1987, which required New YorkStateto work toward placement of disabled individuals in community residences rather than huge, impersonal institutions like Willowbrook. The many group homes that dot the frum community today, run by organizations like Ohel, HASC, and Women’s League, are a direct outgrowth of these developments.

 

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