Darla Schumm is the John P. Wheeler Professor of Religious Studies at Hollins University. Her research focuses on the intersections of religious and disability studies. Along with several other co-edited volumes, Schumm is most recently the co-editor of Disability and World Religions: An Introduction (Baylor University Press, 2016). She is the 2018–2020 chair of the Status Committee for People with Disabilities in the Profession for the American Academy of Religion.
Questions about how to create religious communities inclusive of individuals with a disability often get stuck in the quagmire of architectural modifications or visual and auditory accommodations. To be sure, issues of access are critical, but all too frequently, after religious communities install ramps and accessible bathrooms, provide Braille service leaflets and other worship resources, or secure American Sign Language interpreters or hearing devices, they are content that the work of inclusion is complete. What my own experience as a blind woman coupled with my research interviewing people with disabilities about their experiences in religious organizations indicates, however, is that physical modifications to buildings rarely ensure feelings of inclusion, acceptance, or welcome in religious communities.
I start every interview with people with disabilities by simply asking: What is, or has been, your experience in religious communities and organizations? Not surprisingly, the answers range from deeply positive to decidedly negative, with few neutral responses. I maintain that one of the most helpful ways to begin the conversation about inclusion is to invite people to share their stories. Storytelling may appear an obvious starting point, but the majority of my interviewees report that no one in their religious community ever inquired about their experiences with disability or community membership.
Inviting someone to share their story is a simple gesture, but it points to larger issues surrounding institutional structures and power. If you belong to a religious community, reflect on the following questions: How many people with disabilities are in positions of leadership and/or power? How often are people with disabilities involved in making important decisions about the life of the community? If there are committees or groups reflecting on disability or related issues, how often is it assumed that people with disabilities should or want to participate in these conversations? How many people with disabilities are elected or invited to work on committees having nothing to do with disability or other diversity concerns? Answers to these questions reveal a lot about who is or is not imbued with authority, who does or does not have access to decision-making, whose voices are or are not heard, or whether people with disabilities are or are not thought of as vibrant members of the community.
The philosopher Michelle Foucault asserted that language shapes reality. While I contend that language is not the only determinant of reality, I agree that it is one important factor. For example, the language used in sacred texts, worship, prayers, meditation, or liturgy relies on metaphor. As some scholars note, commonly used metaphors implicitly or explicitly communicate values and prejudices of a community. As a blind woman, metaphors of light and dark or blindness and sight-so prevalent in religious traditions across the spectrum-often leave me feeling less-than, spiritually ignorant, or simply left out. What might happen if a religious community openly discussed problematic metaphors and worked together to identify new metaphors that more accurately reflected and communicated inclusive values?
Interviewees also noted that it matters how members and leaders of their respective religious communities talk about and to people with disabilities, and their words are often hurtful. D. W. Sue et. al. (2007) define microaggressions as: “Everyday verbal, nonverbal, and environmental slights, snubs, or insults, whether intentional or unintentional, that communicate hostel, derogatory, or negative messages to target persons based solely upon their marginalized group membership.” Microaggressions have an insidious dimension, since they often are uttered behind the veneer of a compliment, and the speaker genuinely does not intend to say something hurtful. For example, one interviewee reflected on how she feels when people in her church tell her how amazing she is, how they do not understand how she manages basic tasks given her disability, or how they could never do what she does. At first glance, these words sound complimentary, but the implicit message is that it is surprising that a person with a disability can perform typical activities. Furthermore, these sentiments communicate that she is not welcome to share her truth about living with a disability: some days being disabled is a pain in the ass, but life is very good and she would not change a thing.
Confronting microaggressions is challenging because it insists on the vulnerability to be open to acknowledging one’s own realized or unrealized prejudices. Let’s be honest: we all have them, and it is hard to confront them. What we say to each other and how we say it matters. It also matters that we are open to receiving the news that our words have been hurtful, even if that is not how they were intended.
Establishing authentic and genuinely inclusive community in religious organizations is a much more messy and risky endeavor than overhauling a physical space. It requires a willingness and commitment to examine institutional structures of power, individual attitudes and beliefs about bodies and how they “should” work, as well as messages often unintentionally communicated through our own words and religious language. It requires honest and sometimes difficult conversations about how we understand the divine, our bodies, and one another. It requires the courage to speak our truth, and even more importantly, it requires the wisdom to know when simply to listen.