I did not choose to be a disability support worker. After completing my bachelor’s, I hoped to pursue a master’s in theology, but in the meantime, I knew I couldn’t pay rent by sitting on the couch. After weeks of haplessly filling out job applications in my chilly basement suite, I became desperate to make my looming February rent payment. Someone suggested an open position in a day program that cared for individuals who live with varying degrees of cognitive impairment. I had never considered such a job, but I hesitantly applied.
When the day of my interview arrived, I was asked the standard questions about strengths and weaknesses and teamwork, as well as questions about individuals with intellectual disabilities. “What are your experiences working with persons with intellectual disabilities? While respecting the person’s identity, tell me of your interactions with someone with an intellectual disability?” Thinking as hard as I could, I could think of one person—only one!—who I had interacted with enough to answer the questions with any sort of honesty.
Somehow I received a second interview. I was told that the second interview would be a working interview. I would be required to spend an hour or so interacting with the people I would be supporting if I received the job. I was quite nervous—I did not know how to be around persons with intellectual disabilities! To my surprise, that hour flew by. I learned names, became friends with complete strangers, and laughed more than I knew possible while at work. On my way home, I don’t know if I stopped smiling. I was convinced I had gotten the job.
Since then, I’ve had the opportunity to work as a disability support worker for almost three years. Others have more expertise in this work or have spent more time with persons with intellectual disabilities, but I humbly want to add my voice to the conversation. However, in doing so, I want to recognize, along with Stanley Hauerwas, that “the challenge for anyone who would try to reflect on the suffering of those who are described as disabled is that they must do so from the presumption that they are not disabled. As a result, it is hard to avoid appearing pretentious and arrogant to those who are disabled as well as those who care for the disabled. It is always a dangerous practice to write about others, to try to characterize the life of others, because it is too easy to project on their lives our fears and fantasies.”
Furthermore, I want to acknowledge openly the theological nature of my reflections. I do not work in an explicitly Christian organization, though many who work for the organization, as well as those whom I have supported, identify as Christian. My words thus do not reflect the views of my employers or coworkers. However, as a follower of the risen Christ, I have no way to reflect on my time spent as a disability support professional that is not theological. I am therefore simultaneously a witness to the life, death, and resurrection of Christ, as well as a witness to—and a participant in—the lives of the persons with disabilities with whom I have spent the last three years. I will attempt to speak as truthfully as possible about both realities, viewing the latter through the light of the former. As Hauerwas puts it, “We cannot speak this truth without it having worked truthfully in us.”
Theological Reflections on Caring
Reflecting on the Genesis mandate that humanity was given dominion over all of creation, the Scottish theologian John Swinton has offered the following remarks:
Care lies at the very heart of the vocation given to human beings by God. This raises two key points. First . . . the prerogative of care is to love. To be human is to love like God and to be loved by God. Second, if care is fundamental to what it means to be human and to act faithfully toward God’s creation, then to be a recipient of care is a profound and vital aspect of that process. God calls human beings to care for creation because God loves creation; human beings as part of creation are recipients of God’s desire to love and care for them and to have them care for one another. To care for others and to receive care from others are crucial aspects of human beings’ dominion over the earth.
Thus, for Swinton, caring and being cared for is at the heart of what it means to be human. This may initially seem like an unremarkable claim, but let me take a moment to consider our context here in the West.
The message of modern, liberal society is that individualism and autonomy reign. For many—perhaps even most—inheritors of Western rationalism, the fulfillment of our life is to be independent, free from barriers, boundaries, and anything else that might hinder our pursuit of freedom. Picking up on this notion, Thomas Reynolds has argued that the West has not only normalized autonomy and individualism, but we have also accepted them as essential to the nature of “the good.” This is problematic because persons with disabilities become stigmatized as a result of our expectations about what is normal. Disability results in people failing to live up to the expectations and demands that society places on them. Reynolds does not argue that we should attempt to rid ourselves of a standard of normalcy; rather, he suggests that we need a new normal, one in which persons with disabilities are welcomed for who they are rather than stigmatized.
Swinton’s vision of humanity and the Western model as critiqued by Reynolds cannot operate together. Either society is based on caring and being cared for, or it operates on individualism and autonomy. Try as we may, there is no way to reconcile these options. We either accept caring and being cared for and reject individualism and autonomy, or we accept individualism and autonomy and reject caring and being cared for.
I suggest that if we follow individualism and autonomy to their natural ends, we will find them impossible standards, as true autonomy would mean that everything we have in life is a product of our doing and our doing alone. Every time we shop at the grocery store, drive a car, or watch a television show, we are in some way relying on the product of someone else to achieve our task. Never mind the fact that we were birthed by someone else, who created us with the help of someone else. The idea of true autonomy is absurd, and so we must, at the very least, accept that some caring and being cared for is essential, not only for human flourishing, but also for our survival. But what are the theological implications of this need for care?
If we understand caring and being cared for as close to the heart of who we are created to be, we can also say that we are created to be persons in relationship, and this sense of our humanity can be understood christologically. One of Karl Barth’s major claims in his Church Dogmatics is that “the ontological determination of humanity is grounded in the fact that one man among all others is the man Jesus.” That the Word of God became flesh and dwelled among humanity is the ontologically determining factor by which humanity must understand its own being and existence. Therefore, our humanity is only our own as it is in relationship with the person of Jesus Christ. Similarly, the relationships we engage in with others are, at their best, a reflection of the true relationship, the relationship between humanity and the Word made flesh. Human ontology is not rooted in something essential to our own being but rather in something exterior to ourselves, that is, the person of Jesus Christ. Humanity is determined by Jesus, not Jesus by humanity. Jesus is the one who shows us what it means to be truly human, a message that applies to all people regardless of their ability or disability.
To return to Swinton: “God calls human beings to care for creation because God loves creation; human beings as part of creation are recipients of God’s desire to love and care for them and to have them care for one another.” Thus, as God cares for us, we care for and are cared for by others. True Christian care is only possible as it is done in light of the care that God gives to humanity daily.
Theological Reflections on Persons with Disabilities
Persons with disabilities provide important challenges to our traditional understanding of church, society, epistemology, ontology, and architecture, just to name a few. Discussing disability also requires wrestling with who fits in this category and how we begin to define the category of disability. Indeed, people traditionally understood to be disabled often bear absolutely no similarities in their respective capabilities. To say someone has a physical disability has significantly different implications than to say someone has an intellectual disability. Thus, to speak about disability in any way is always, ironically, an exercise in dexterity. To step too quickly or too heavily will result in untrue speech, even if the speaker sets out with the best intentions. To speak truthfully about disability is to speak with caution.
Yet we must not be too petrified of speaking falsely that we cease to speak about persons with disabilities. For centuries, it has been the task of society to hide persons with disabilities, keeping them out of sight in order to avoid disturbing our perceived notions of peace. Even today, where I live in Winnipeg, Manitoba, there are still active institutions that house persons with disabilities. Common practice today is not much different from institutionalization. Housing an individual in a group home continues to segregate persons with disability from greater society, leaving integration up to the house’s staff, the family of the persons with disability, or to the residents with disability themselves. I know this because I work in such a house. This means that we must say something about persons with disabilities so that they do not continue to be hidden from the public eye, subjected to living lives of loneliness until they pass on.
Swinton has suggested that we should begin our search for how to speak theologically about disability by asking how to speak about God. For Swinton, “The type of God we assume God to be will, to a greater or lesser extent, determine how we understand what it means to be human, which in turn will determine how we respond to disability.” Then Swinton suggests that disability theology may benefit from the apophatic tradition, which recognizes that God is ultimately beyond all knowledge and imagination. Although we can speak about God based on bits of revelation we have received from the Bible, tradition, and the Holy Spirit, those definitions all fall short of an accurate depiction of who God truly is. Thus, for the apophatic tradition, “The best that we can do is talk about what God is not.”
If God cannot be compartmentalized or grasped by our feeble human understanding, this has significant implications for how we speak generally about humanity, particularly about persons with disabilities. If God cannot be compartmentalized or grasped by our feeble human understanding, “God is simply God.” As Swinton argues, the implications of such an understanding are that “God’s image cannot be claimed by any group of human beings. To be in God’s image has nothing to do with able bodiedness; nor has anything to do with disability.” Said differently, even as we speak about God being love, good, holy, or any other attribute, we have no empirical understanding of exactly how these things are to be understood in the fullness by which they are a part of God’s being. Thus, how can we identify certain human qualities or capabilities that are essentially “good” if we do not even know what true goodness looks like? As Swinton argues, “Human variation doesn’t have any specifically theological or moral significance. Rather, such variation is an obvious aspect of a created universe within which neither able bodiedness nor disablement need be attributed to sin . . . , or claimed as representative of the image of God.”
Swinton’s appeal to the apophatic tradition provides us with a good starting point for framing our speech about persons with disabilities, but we must move beyond these frameworks in order to say something constructive about persons with disabilities. At this point, I think it is helpful to turn to the work of Barth. As I showed above, for Barth, one man among all others is the man Jesus. If Jesus is to be one among all others, then it must be true that Jesus is one among both persons with and without disabilities; one man among all persons with disabilities is the man Jesus. Jesus’s ministry and fellowship is extended to those with disabilities. To be a person with a disability is to be a person loved and cared for by God. This is manifested most particularly in God’s covenant with humanity, which is marked by the church, the body of Christ.
My Experience Working with Persons with Disabilities
As a Christian, I operate as a witness to the good gifts that God bestows upon humanity every day. As God has bestowed the gift of life upon humanity, God cares for humanity. Thus, I care for those I support because God cares for me. However, to assume that my role as a disability support worker is solely as caregiver and not as care receiver is to assume a posture of arrogance. Such a posture establishes a hierarchy within humanity, as if God’s gifts to the caregivers were somehow greater than God’s gifts to those people we designate as care receivers.
On the contrary, it has been my experience that persons with intellectual disabilities are not only capable of caregiving but that they excel at it. While caregivers without disabilities often focus on the physical needs of a person, persons with intellectual disabilities often care for the heart. One woman I supported who lives with Down syndrome is the best hugger I know. Another knows how to put a smile on your face no matter the occasion. Yet another will never forget your birthday. Some of the individuals I have worked with are not fully capable of caring for their physical needs, yet many persons with intellectual disabilities remind us that there is more to life than our physical needs. As human beings, we are created with emotions, the capacity for joy and sorrow, and from my experience, many persons with intellectual disabilities are very good at caring for those emotions.
This suggests an important lesson. If we understand God to be the giver of life, we must understand that just as we receive care from God, we also receive care from the men and women around us. Thus, as witnesses of God’s care for humanity, we are not only called to extend care to others. No, to truly be witnesses of God’s care for humanity, able-bodied caregivers must understand that they too need to be cared for; we all must understand that it is only by accepting care from others, particularly persons with disabilities, that we truly fulfill the divine paradigm of care. To refuse care, or to assume we do not need it, is to live into Western society’s posture of individualism and rationalism, to live as if we have complete control over our lives.
Disability advocates often feel pressure to demonstrate to the public that persons with disabilities are capable of operating within the established frameworks of our society; by doing so, they often gloss over the very real struggles that are involved in living with disabilities. We must be clear that our task as Christians is not to validate the existence of persons with disabilities based on their capacities for operating within society. We certainly have much to learn from these men and women, and even if persons with disabilities fell short of every capacity that our society values, they would still be important because they, like the rest of us, are persons created for relationship with God.
As a disability support worker, I believe it is my highest calling to be present with persons with disabilities, to show them that they are loved by God, and to be open to the ways that God’s love shines through them into my life. This may not mean that they can recite the creeds or understand what it means for Jesus to come into their lives and transform their existence—although, it may mean just that—but it certainly means that I am called to be a witness to the life, death, and resurrection of Jesus Christ, the true Word of God, by showing the love that Christ has shown to all humanity and treating the individuals I support with love, patience, goodness, and gentleness. In doing so, I not only operate as giver, but I open myself up to receive as well.