Wrongful life? The strange case of Nicholas Perruche

Human Life Review, Winter 2002 by Lysaught, M Therese

What resources might we in the United States have to counter the description of persons with disabilities offered by "wrongful life" cases? The picture is mixed. The law itself might provide one antidote. Currently only three states recognize wrongful life suits-New Jersey, California and Washington-while twenty-three state appellate courts have refused them. This, coupled with the constitutive power of the Americans with Disabilities Act-contested though it may be-challenges the non-native claims of "wrongful life" suits vis-h-vis persons with disabilities.

But this very account of our legal situation reveals that the status of persons with disabilities in the United States remains deeply ambiguous. Those who wish to forge a different reality for persons with disabilities will need to turn to other stories and practices. I will end by offering just one powerful alternative practice that emerges, coincidentally, from France: the communities of L'Arche.

Founded by Jean Vanier in 1964 and subsequently exported to twenty-four countries including the United States, L'Arche works to create communities of friendship between volunteers and persons with disabilities-disabilities even as profound as Nicholas's. L'Arche intentionally embodies an alternative narrative of who persons with disabilities are and puts that narrative into practice. Against the belief that persons like Nicholas are so profoundly damaged that the good of their existence is negated, L'Arche aims to help them gain a deeper sense of their own worth, as persons worthy of love and friendship, whose value and beauty lie hidden in their weakness. It is a practice premised on a different story-not one of privacy and "nonpersons." It is based on a belief in the reality of the Trinitarian God, a community of persons, in whose image and likeness all of us-visibly handicapped or not-are made. By seeking to live this reality, L'Arche makes its claims "come true" even for persons with profound handicaps and provides a real alternative to the story embodied only in the technologies of prenatal surveillance. In so doing, it not only challenges us to see persons with disabilities differently, it challenges us to understand ourselves, and so to live, differently.

L'Arche and its work, of course, does not deny the tragedy of Nicholas's condition, the loss of who he could have been, and the anguish of his family. It does not deny the pain experienced by those with disabilities, but locates their pain primarily in society's rejection of them as persons. "Wrongful life" claims embody this rejection profoundly. By making manifest the dignity of persons with disabilities, L'Arche challenges the belief that tragedy, loss, and anguish are the only words needed to describe Nicholas's life and that Nicholas's very existence is a wrong above all to himself.