Monday, April 14, 2008

Surviving with a Disability: Location, Location, Location

I was struck by the stark contrast of two international disability stories that emerged late last week.

London’s Daily Telegraph reported the story of Lali, born with craniofacial duplication:

An Indian baby born with two faces is doing well one month after her birth, doctors have said. Lali was born with two noses, two pairs of lips and two pairs of eyes - but only two ears. And while she may seem like an oddity to some, her proud parents think she is simply a God reincarnated…

Her parents. . . said their little girl was "a gift from God". Excited villagers claim she is the reincarnation of the Indian God Ganesha and celebrated her arrival with clapping, cheering and offerings of gifts and money.

The story continues:

Doctors who delivered the baby said she appeared to be in good health, and is leading a normal life with no breathing difficulties. They were initially uncertain whether the baby would have normal functions but say so far she is "doing well" and eating from both of her two mouths. She also opens and shuts all four eyes at the same time.

The second story, in its English version, appeared at LifeSiteNews:

Amalé is four years old. Like many other children, he went to school for the first time on Thursday, February 12th, in Brasilia. A Kamiurá Indian from Mato Grosso, Amalé attracted attention from the rest of the children because he was the only child who was without a uniform and a backpack. But Amalé stands out from the rest for a much more troubling reason. The little Indian is actually a survivor of his own history. 

After being born, November 21, 2003 at 7 am, he was buried alive by his mother, Kanui. She was carrying out a ritual prescribed by the cultural norms of the Kamaiurás, which require that children of unwed mothers be buried alive. To seal the fate of Amalé his grandparents walked on top of the mound.

The report continues:

Nobody heard even a cry from the child. Two hours after the ceremony, in a gesture of defiance against the whole tribe, his aunt Kamiru set out to disinter the baby. She recalls that his eyes and nose were bleeding profusely and that he first began to cry only eight hours later. The older Indians believe that Amalé only escaped death because that day the earth of the pit was mixed with numerous leaves and sticks, which could have created a small air bubble . . . 
The motives of infanticide vary from tribe to tribe, as do the methods used to kill the little ones. In addition to the children of single mothers, handicapped and mentally retarded children are also condemned to death. . . . The rituals of execution consist in burying alive, choking, or hanging the babies. Generally it is the mother herself who must execute the child, although there may be cases in which she can be helped by the father.

So there we have it. In India, disability is viewed as a blessing, in Brazil, a fatal curse. Both instances target the children through anthropological and cultural lenses.

I’ll leave cultural perceptions of disability until another time. What’s important here is to note that while any society has its views about disability, it’s only happenstance in many places that makes the difference between living with a disability and being killed because of it.

Where are we, culturally, in the US and the West in terms of how we view people with disabilities? I think we straddle an ever-widening chasm: on one hand, people with disabilities are more vocal, included, and supported than ever before. On the other hand, we are increasingly silencing those with disabilities who can’t speak or defend themselves through assisted suicide and euthanasia.

We may, as a society, not choose to worship someone with a disability as a god, but, as a society, are we very far from primitive Brazilian tribes who kill newborns because they have a disability?

In many ways, I think not. Some of our finest “bioethicists,” for example, think it’s just dandy to do away with newborns (and others) with disabilities because they are judged to have lesser worth than those without disabilities.

How will we decide the future? Thumbs up, or thumbs down?

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