The Future of the Disabled in Liberal Society

This book is a sophisticated and welcome contribution to what the author calls "the continuing debate concerning the strengths and weaknesses of liberal morality that dominates contemporary society." Its thesis: Despite recent public-policy efforts to ensure equal opportunity and access for all, liberal society cannot sustain equal regard for persons with disabilities. This is especially true if the disabilities in question are "mental." The liberal presupposition which privileges "choice" as the primary category in public life and apogee of human aspiration, together with modern technologies of reproductive and genetic engineering, dictate that it would be far better if human persons who are, by definition, incapable of choosing on the liberal model were not to appear among us.

So strong is the prejudice in this direction that we simply assume that hypothetical unborn children with cognitive disabilities would, if they could, choose not to be born. Liberal society, under the dominant Rawlsian model, holds that persons with mental handicaps should be given "access" and should not be discriminated against unjustly. But the fact that such human beings have rights if they live in our midst does nothing to mitigate the cultural norms that measure progress by how successful we have been at lowering the incidence of births of the disabled.

Hans S. Reinders, professor of ethics and mental disability at the Vrije University in Amsterdam, cites one of America’s leading bioethicists, Tristam Engelhardt: "Not all humans are self-conscious, rational, and able to conceive of the possibility of blaming and praising. Fetuses, infants, the profoundly mentally retarded, and the hopelessly comatose provide examples of human nonpersons. They are members of the human species but do not in and of themselves have standing in the secular moral community" (emphasis mine). Because they lack such standing, the barriers to eliminating persons with disabilities begin to wither away. There are now no barriers to their elimination prebirth: that is our current policy. If we go the direction of Holland and approve physician-assisted (or medicalized) euthanasia, such human nonpersons could be removed from among us after birth.

To be sure, as Reinders points out, Engelhardt and others observe that, although secular morality "does not grant disabled people moral standing per se, this does not necessarily mean they are deprived of it." Given the religious derivation of so much of our ethical thinking, barriers to simply killing persons with disabilities remain. But such barriers, Reinders argues, are under continuous pressure of "secular morality" and are likely to be bulldozed out of the way by the potent machine of biotechnology backed up by medical authority. Will our hands really be stayed over the long haul? If we continue in our current direction, it seems unlikely.

Reinders argues that "people with mental disability and their families have reasons to be worried about their future in liberal society. The rapid proliferation of genetic testing may have discriminatory effects...because it brings the birth of disabled children within the focus of ’reproductive choice,’ which makes their parents answerable to the charge of ’irresponsible behavior.’" The mother of a Down syndrome child, responding to a column I had written, expressed her deep foreboding on this very theme. She worried about how society will assist persons with disabilities and their families if parents who choose to bring a child with Down syndrome into the world are labeled irresponsible and therefore wholly culpable. This is not the stuff of science fiction. It is the very texture of our ethical lives at this moment. All the forces of popular culture push in the direction of trying to eliminate suffering (given our assumptions about what constitutes suffering), to make life easeful and untroublesome.

What about accepting life as a gift? What about acknowledging our finitude? Wouldn’t we be a more compassionate, decent, and just society if we moved in this direction? This requires that the religious sources of the moral life be given more ample public scope. The triumph of "choice" and "self-determination," Reinders concludes, "makes us blind to other dimensions of our existence, such as our lack of control, our vulnerability, and our dependence on other people. For this very reason, it also makes accepting disabled people as human beings in their own right...a difficult task indeed."

The upshot is that liberal democracy is not in a very strong position to sustain solidarity with persons with disabilities and their families. We have turned to certain liberal values-equal opportunity, antidiscrimination-to help eliminate barriers so that the disabled can participate. But, at the same time, liberal values push toward what Reinders calls "prevention" undertaken in the assumption that "reproductive choice" cannot be questioned. Over time our capacity to recognize, to welcome, to support, and to care for human persons whose lives seem to us entirely pointless and burdensome will collapse. Reinders makes a real contribution not only to debates in bioethics understood narrowly but to our ongoing exploration of the many ways in which liberal society undermines moral intuitions and capacities that do not mesh with the triumph of that paragon, the sovereign chooser. This is a sobering book.