Eva Kittay

I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child “forever small.” The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay “forever small” and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments.

As parents of a young woman who very much resembles Ashley, we recognize the way her parents speak of their daughter’s preciousness, and of the love and joy she brings into their life. We know too well the hardships associated with rearing a child with severe physical and intellectual disabilities, especially in our own society, unyielding as it is to the medical needs even “normals” have. We would not have our daughter Sesha undergo similar interventions. We do not believe she is a perpetual child, even if her intellectual capacities do not exceed those of a child, for she has lived for thirty-seven years in this world and with that has acquired knowledge, sensitivities, and sensibilities that no child of “comparable” capacities could have.

In this article I examine the proposition that severe cognitive disability is an impediment to moral personhood. Moral personhood, as I understand it here, is articulated in the work of Jeff McMahan as that which confers a special moral status on a person. I rehearse the metaphysical arguments about the nature of personhood that ground McMahan’s claims regarding the moral status of the “congenitally severely mentally retarded” (CSMR for short). These claims, I argue, rest on the view that only intrinsic psychological capacities are relevant to moral personhood: that is, that relational properties are generally not relevant. In addition, McMahan depends on an argument that species membership is irrelevant for moral consideration and a contention that privileging species membership is equivalent to a virulent nationalism (these will be discussed below). In consequence, the CSMR are excluded from moral personhood and their deaths are less significant as their killing is less wrong than that of persons. To throw doubt on McMahan’s conclusions about the moral status and wrongness of killing the CSMR I question the exclusive use of intrinsic properties in the metaphysics of personhood, the dismissal of the moral importance of species membership, and the example of virulent nationalism as an apt analogy. I also have a lot to say about McMahan’s empirical assumptions about the CSMR.