What it Means to Be “Disabled”: Theological and Ethical Reflections

[1] As someone who teaches and writes about disability and theology, I have been increasingly intrigued by the assumptions that people make about my own disability status. On the one hand, people who have not met me but yet are familiar with my work often assume that I have a disability-or, perhaps, am closely related to someone who has a disability-as this would seem to explain why I write and teach about this topic. Upon meeting me, these folks often seem somewhat disappointed that I appear “normal.” On the other hand, people who have first met me in person are often surprised to learn that I study disability, and will quickly ask how it was that I got interested in the topic of disability, as if that needed explanation. It also rarely seems to cross their minds that I might have a hidden or invisible disability.

[2] These assumptions are interesting to me because they reveal quite a bit about our common sense understandings of disability, assumptions that I believe have profound theological and ethical implications. A first assumption is that we know disability when we see it, as if all forms of disability are immediately obvious to the outside observer. It is because of this assumption that I start each class I teach on disability by asking members of the audience-typically a group of people that looks predominantly able-bodied-to raise their hands if they have a personal experience with disability, either in their own lives or in a close relationship. Without fail, almost every hand goes up. I tell them that the U.S. Census Bureau estimates that 1 in 10 individuals and 2 in 7 families have a direct and significant experience with disability, meaning that an individual requires significant assistance from a person or device to carry out ordinary tasks. As I point out to my classes, each of us knows more than ten individuals or 3 ½ families, and thus it is not surprising that almost all of us have some connection to disability, even though these connections may not be immediately visible to outsiders. I also remind them that we also know, from these experiences and others, that disability takes many forms-when we speak of disability, we might immediately think of people who use wheelchairs or Seeing Eye dogs, yet we also know that the category of disability includes numerous other physical, cognitive, and psychological differences.

[3] A second assumption is that only people who have been affected by disability would be interested in disability, either as an academic topic or as a justice issue. Thus, my scholarly work on disability makes sense to others only if I also reveal to them a personal experience of disability. While the hand-raising exercise (above) helps a bit with this point (showing that almost all of us have some connection to disability), I question why we assume that interest and commitment follow solely from personal experience. In a way, this is reminiscent of assumptions that only people of color would be interested in anti-racism activities, or that only people who do not identify as heterosexual (or, perhaps more often, people who have had a close friend “come out” to them) would care about heterosexism and homophobia. When I teach about disability in Christian settings, I often here will point to the parable of the Good Samaritan-are we only to be committed to individuals whose experiences match our own, or are we to have a broader answer to the question of who is our neighbor? Or, drawing on the parable of the lost sheep, I ask my students whether it okay to rest once most of us have access (to buildings, communities, relationships) or whether we are called to keep seeking and working until all are welcomed and included. And, if all else fails, I remind them that disability is an open minority-all of us will experience disability, in one form or another, if we live long enough. Thus perhaps the question is not why someone should be interested in disability, but whether there is any excuse for someone not to be interested!

[4] Once I have convinced my audience that disability is more than meets the eye, and that disability is relevant to us all, I can move on to a discussion of the category of disability. This is where the most basic and challenging assumption lurks: the assumption that we know what disability is. It seems like a term in need of no definition or explanation. No one asks what I mean when I say that I study disability; no one asks for clarification when I ask people to raise their hands if they have a connection to disability. Defining disability seems unnecessary, and defining “normal” seems almost impossible. Both seem to be self-evident categories. Yet there are at least three distinct definitions for disability: the medical model, the minority model, and the limits model.

[5] In the medical model, attention is focused around what a person can or cannot physically or functionally do. This model is closest to the common sense idea that a disability means that someone’s body or mind does not work “properly” (or deviates from that of the “normal” human body or mind). Labels such as “invalid,” “cripple,” “spastic,” “handicapped,” and “retarded” all stem from this model, as do more contemporary labels such as visually impaired or cognitively different. According to this model, it would be nonsensical to suggest that a person who is unable to walk or hear might not be disabled. Disability, according to this perspective, is located solely within the body as an individual problem, with no association to societal or environmental factors.

[6] In the minority model, attention is focused around shared experiences of discrimination and oppression. This model argues that disability is not so much about what one can or cannot do but rather has to do with how individuals are treated in their daily lives and by society at large. The “problem” is no longer identified as the physical, cognitive, or psychological characteristics of the individual, but rather is identified as prejudicial, exclusive, and oppressive attitudes and barriers-aspects that are related to social or political concerns rather than individual diagnoses. This model highlights the fact that individuals are often more handicapped by the physical and attitudinal barriers in society (for example, lack of access to employment, education, and health care) than by their own abilities. The recognition of such barriers makes disability more than just a functional (i.e., medical) or theoretical concern-it becomes an issue of justice as well.

[7] The limits model begins by noting that both the medical and minority models use the term “disability” as an absolute category without a level or threshold. One is either disabled or not. Yet reflection on the lived experiences of people who identify as disabled, as well as those who do not, show the category of disability to be a somewhat fluid construction. Today, as I sit to write this text, I may feel rather disabled-aware of the pain and limitations of my body and of the barriers imposed by the physical environment that surrounds me. Tomorrow, sitting comfortably in a chair discussing these ideas with a friend, I may feel not-disabled. I know that this fluidity may not be the primary experience for all people, either with or without disability, although most of us experience some situations where we feel more or less disabled than in other situations. But such fluidity reminds us that disability is not just an either/or-it is also a “when,” “where,” and “how.” Lived experiences of disability such as these have no home within either the medical or minority models.

[8] Attention to this fluidity, as well as to the commitment that disability is as much an identity statement as it is a biological or socio-political condition, leads to a consideration of disability as the embodiment of limits. The limits model notes that good health is never a permanent state, so the “exception” (being disabled) is perhaps actually more “normal” than the norm (being temporarily able-bodied). Limits are not an unusual experience, and might even be considered part of the essence of being human. Unlike the medical model, the limits model begins not with a value judgment on particular limits, but with the notion of limits as a common, indeed quite unsurprising, aspect of being human. From here we can ask why we see some limits as normal (I cannot fly) and others as abnormal (I cannot run). Unlike the minority model, the limits model avoids inattentive categorization into “us” and “them,” and instead encourages us to acknowledge a web of related experiences (suggesting, for example, that a legally blind person may in some ways be more similar to a person who wears glasses than to a person who uses a wheelchair). The medical and minority models offer valuable perspectives that ought not be abandoned, to which the limits model offers a companion piece that emphasizes reflection on the experience of embodiment in its various formations, including disabled embodiment. Thus the limits model offers a new way to think about what disability is, and challenges all of us to reconsider what we mean when we talk about disability.

[9] Why does all of this matter? I would argue that our definitions are integrally related to our ethical and theological perspectives. Understanding disability within the medical model leads us to an understanding of the human person as created in God’s image in a way that emphasizes health, function, and achievement of a norm. Our energies, as well as our ethical decisions, emphasize ways in which we can be restored-and can help restore others-to a state of health. While this can be taken to dangerous extremes (e.g., young girls trying to live up to the images in beauty magazines), acceptance of this model also leads us to emphasize the importance of universal health care, technological and medical innovations, and programs to eliminate hunger and homelessness.

[10] Understanding disability within the minority model leads us to a different set of theological and ethical claims. Here we see echoes of liberation theology, where God (as well as the good person) is on the side of the poor and the oppressed. This is where we see Nancy Eiesland’s proposal of the Disabled God, an image not altogether unlike earlier proposals that God is black or that God is a woman. This model also proposes a solidarity between oppressed groups, where people with disabilities are inextricably connected to all other people who experience oppression, and where the oppressed have a special insight into the nature of God. Those who are not oppressed are to listen, learn, and then act from what we learn from those who have experienced oppression. The eschatological vision is not physical perfection but rather a community of justice, where all are valued and free.

[11] Understanding disability within the limits model highlights that all people are limited to varying degrees, and offers this perspective as a foundation for theological reflection. Limits are no longer something to be overcome (“fixed”) in search of perfection, nor is the focus exclusively on experiences of social oppression. Rather, from the limits perspective, disability might be understood as limits that are not accommodated by the environment, and sin might now be redefined as the ways in which we both exaggerate and also deny our own limits and the limits of others. Here our image of God might be one that emphasizes creativity, a quality that often arises out of experiences of limits. Rather than generating pity (from the medical model) or righteous anger (from the minority model), this lens also leads us to generative possibilities for community, emphasizing connections and interdependence rather than competition, separation, or hyper-individuality.

[12] Which of these models is correct? It seems to me that none is sufficient alone; each has dangers and each has valuable perspectives to offer. As a result, when someone makes an assumption about my disability status or asks me if I have a disability, I am more likely to respond with an invitation to further conversation rather than a simple answer that restricts me to any one of these models. Clearly, the way we interpret “disability” affects our self-understandings as well as our attitudes toward (and treatment of) people with disabilities. My answer, “yes” or “no,” has meaning for my own sense of myself as well as for the other’s relationship to me. But these assumptions also have profound ethical and theological implications that go beyond just my conversation partner and me. Understandings of disability impact practical decisions, statements of value, and financial commitments. Even the nature of God and of human community is at stake. Clearly these are not just issues for people with disabilities. Rather, these questions-what it means to be “disabled” as well as what it means to be “normal” -raise crucial issues that are significant to us all, and are worthy of further conversation and exploration.

For further reading:

Black, Kathy. A Healing Homiletic: Preaching and Disability. Nashville, TN: Abingdon Press, 1996.

Creamer, Deborah B. “‘God Doesn’t Treat His Children That Way’: The Experience of Disability in the Families of God.” Journal of Religion, Disability, and Health 9:3 (2005): 73-84.

Creamer, Deborah B. “Toward a Theology that Includes the Human Experience of Disability.” In Graduate Theological Education and the Human Experience of Disability, edited by Robert C. Anderson. Binghamton, NY: Haworth Press, 2003.

Eiesland, Nancy L. The Disabled God: Toward a Liberatory Theology of Disability. Nashville, TN: Abingdon Press, 1994.

Webb-Mitchell, Brett. Unexpected Guests at God’s Banquet. New York: Crossroad, 1994.