Embodying Wholeness: An Introduction to Disability Theology
Ready to share. Photo credit: Jim Ptacek
I’m grateful to have been invited to have the opportunity to craft an adult forum presentation for my church community around introducing disability theology as a way to begin to integrate a spirit of awareness and belonging into our worldview and conversations. It was a joy to be able to share something so dear to me with my church family, and I’m still in awe of how well received and wonderful it went. Below is a manuscript of my spoken presentation. Thank you to all who attended and listened so thoughtfully.
Embodying Wholeness: An Introduction to Disability Theology
by Kayla Mravec
Good morning, everyone, and thank you all for being here. Thank you, Rev. Patricia and Rev. Gabriel, for your assistance and support as I prepared this forum. Welcome to any visitors and loved ones of mine present. Many of you might not know, this forum has been over a year in the making, and began with a hymn lyric and conversation with Rev. Brandon. Last January, during the season of Epiphany, as we sang “songs of thankfulness and praise,” the lyric in verse three, “manifest in making whole, palsied limbs and fainted soul” appeared on my bulletin page and startled my heart. As a young woman with cerebral palsy, I understand myself to have been created whole, palsied limbs and all. Following the worship service I found Rev. Brandon, and with a surprisingly shaky voice I shared my experience and concern about the outdated lyric. With gracious ears Rev. Brandon listened to my story, and our conversation led to a discontinuation of the hymn at St. Paul’s and reading the book: My Body is Not a Prayer Request: Disability Justice in the Church by Dr. Amy Kenny together.
My hope and goal for our forum time today is to introduce a framework of disability theology that begins to invite actionable ways to integrate a spirit of embodied wholeness into our worldview and community. To achieve this we’ll explore 1) defining disability and societal models for understanding disability, 2) disability theology and Jesus as the disabled God, 3) moving from inclusion toward belonging and 4) ableism and disability mosquitos as places to begin transforming our words and presence with the theological concepts presented. Before we begin with defining disability, please take a moment and consider: What are some ideas, words or phrases that come to mind when you think of or hear disability? We’ll take a moment and then name about five.
Defining disability is…complex. There are so many forms and types of disabilities, from physical to intellectual, and each disability can and does present itself uniquely in each person. Secondarily, it’s worth noting that every one of us will be touched by disability at some point in our lives, directly through an acquired disability or through relationship with a loved one. For many years “people first” language has been the accepted terminology for identifying disability. This is to emphasize the humanity of individuals with disabilities. Recently, I’ve read and heard other people with disabilities refer to themselves as a disabled person, with identity first language. This is an intentional choice to reclaim disability, showing that disability is not a bad word. Disability is a fact, one part of some people’s lived experience. Many times I’ve heard identity first language in social justice circumstances and conversations. Personally, I alternate between the people first and identity first language for myself, and often say, “my cerebral palsy” or “my CP.” It’s also important to note that given this framework, people without disabilities are identified as non disabled people, not able-bodied people.
Able-bodied language stems from an older model of understanding disability, the medical or disability-loss model. There are two models for considering disability; this medical, disability-loss model, or the more recent social, or disability-gains model. The medical model focuses on what is lacking or missing because of a person’s disability. The social model highlights how disabled people relate to and with society. Space is given to questions and considerations of accessibility, experience and creativity in the social model for disability. I like what Dr. Amy Kenny offers when thinking about how to consider defining disability: “What if we understood disability not through potential loss, but through its multitude of gains? If we allow more room for biodiversity, we might come to fully embrace disabled people as bringing their own cultural narrative and embodied wisdom to our communities. We might even embrace our disabled God.” In Dr. Kenny’s quote she mentions “our disabled God.” With this, I’d like to take another moment for reflection before we continue. We won’t share at this time, however you’re welcome to share on your reflection if you feel called to as part of our time for questions at the end. We’ll take a minute or two, and I invite you to reflect on this: What is a lived experience in your journey that has invited you to consider new ways of approaching your faith and spirituality?
How can God be disabled? If you were present last week for Rev. Brandon’s sermon, he echoed a similar sentiment when he spoke about how Jesus retains His resurrection scars from John 20. This theological concept of Jesus as the disabled God was introduced by theologian Nancy Eiesland. Eiesland wrote and taught from her own experience of a disability from a congenital bone defect, and penned this new understanding of Jesus as the disabled God in her 1994 book The Disabled God: Toward a Liberatory Theology of Disability. Her theological re-conception of Jesus as the disabled God works in a powerful way to contextualize how humans can perceive God in their unique situation. She writes that she hopes to show how “the disabled God emerges in the particular situation in which people with disabilities and those who care find themselves as they try to live out their faith and fulfill their calling to live ordinary lives of worth and dignity.” For Eiesland, this is a powerful journey of discovery. Her christology, or understanding of Jesus, is a christology from below, beginning with the experience of God becoming human and living among humanity. Jesus then conquers death through the resurrection but acquires the wounds of humanity in the process. Through her reconstruction of the symbol of Jesus as the disabled God, the incarnation takes on a new meaning, giving way to a comprehensive representation of Emmanuel: God with us.
In the incarnation, God became flesh for the sake of humanity. By starting with the incarnation, Eiesland shows that God is in a true relationship with humanity. This relationship transcends the brokenness of being human by bringing the divine to humanity. She understands that, “God became flesh in a particular time and place....Christology is fundamentally about human experience and human bodies as partially constitutive of God. God is with us: Emmanuel.” The mystery of God taking the form of a human is a powerful image to hold together with the experience of being, and in particular of disability. The nature of disability holds within it a nuance of struggle and injustice. In the incarnation, Jesus takes on these very human experiences and gives a profound meaning to the disabled experience.
The incarnation allows for humanity to be loved in spite of its imperfections and experiences. Because God takes the form of a human in the person of Jesus, this calls for a universal recognition of humanity being deeply loved. In the resurrection Jesus takes this one step further, by permanently taking on the wounds of humanity. Reflecting on Luke 24 Eiesland recognizes that, “In presenting his impaired hands and feet to his startled friends, the resurrected Jesus is revealed as the disabled God. Jesus, the resurrected Savior, calls for his frightened companions to recognize in the marks of impairment their own connection with God, their own salvation. In doing so, this disabled God is also the revealer of a new humanity. The disabled God is not only the One from heaven but the revelation of true personhood, underscoring the reality that full personhood is fully compatible with the experience of disability.” In describing Jesus as the disabled God, Eiesland not only calls for a more expansive theology for disability, but also of humanity and how each and every person is loved and belongs. I invite you one more time to indulge me in another moment of reflection, either contemplating what we’ve just studied about Jesus as the disabled God or, Consider a time you felt misunderstood or excluded- how did you feel? Now consider a time you felt seen, heard and loved- how did you feel then?
Eiesland’s work paves the way for a movement from inclusion toward belonging. In the world of disability, buzz words such as exclusion and inclusion mark the improper and proper ways of relating to people with disabilities. Theologian John Swinton takes this one step further challenging the notion of inclusion. Inclusion is often times used to recognize an open gesture of someone into the community. Such gestures might acknowledge one’s presence among a group of people. However that may be the end of any sort of interaction. One example may be inviting a person with a disability to a gathering, but past the formal greetings, not engaging with the person again. They are included but do not necessarily belong. The difference between being included and belonging is the nuance between being present and being missed. Swinton states that, “to belong you simply have to be noticed as yourself. To be included you just need to be present. To belong you need to be missed. That is the fundamental principle, which lies behind authentic Christian community for all people.” Drawing upon the work of Dietrich Bonhoeffer, Swinton distinguishes inclusion and belonging through the lenses of self centered love and spiritual love. For love to be considered “self centered,” the love that is shown to another person is on behalf of the giver’s own terms. While the love may be well intentioned, its focus is not on the receiver. Spiritual love, on the other hand, is the type of love present in Jesus. Spiritual love, “helps us to look properly; to look into, at, past and through difference and towards Jesus; the one who lives within each human person. It is as we look to Jesus and as we learn to look at one another as Jesus looks at us, that we learn what it means to love one another in (and not necessarily in spite of), all of our differences.” Spiritual love is finding Jesus in each person and entering into relationship with them, as Jesus enters into relationship with each person. To belong is to be loved and recognized. Yet recognition does not have to manifest itself in grand gestures. People with disabilities know this way of spiritual loving well, for it is simply living faithfully with an eye toward Jesus.
Adopting a disposition of belonging and spiritual love challenges us to a renewed conception of empathy. When we recognize Jesus within one another, forging new relationships calls each person to a deeper understanding of themselves and of God working in the world. Dr. Amy Kenny, who we heard from at the beginning of our time, addresses how to dismantle ableism, or discrimination in favor of non disabled people. What's remarkable about ableism is that it is so ingrained in our society that it affects very common aspects of everyday living and mindsets. Even today I’m learning about the minute ways ableism creeps into my presence in the world. My story that opened our time is one example of how ableism seeps through our language and use of metaphor. Dr. Kenny writes, “using disability as a metaphor “others” disabled people. Blind, deaf, mute, lame, crippled, dumb are all frequent metaphors predicted on the idea that the bodies and minds of one quarter of the US population are unwelcome or unworthy. If you think using metaphors isn’t so bad, ask yourself this: have you ever heard them used in a positive way? Has “lame” ever meant anything good? Have you ever experienced “crippled” as something powerful?…Being told over and over again that your body is immoral is exhausting. No, that meeting was not “paralyzing” or “crippling” or “blinding” unless in was physically paralyzing, crippling or blinding.” These metaphors exemplify one of many micro-aggressions toward disability.
Dr. Kenny calls these micro-aggressions toward the disabled experience disability mosquitos. As a disabled person, each time a seemingly harmless phrase or invasive question or comment is shared, it hurts and inflames my spirit. Some common examples of mosquito bites I’ve experienced include being called “inspiring” for completing everyday tasks, saying that God would heal me if I prayed more, and people claiming that I’m not that disabled. There are many others. Dr. Kenny emboldens us offering, “it’s not about avoiding a list of words. It’s about rethinking what those words mean, what they assume, and how they impact people around you…It is harmful not just to me or even to an entire community of disabled humans; it is destructive to all of us, whether we realize it or not. No wonder people interpret my body as damaged when our language portrays it as such…Our words are the vehicle for ranking our bodies within an artificial hierarchy, one that claims disability is cruel, subhuman and bears less of God’s image.” When we begin to rethink what the words and phrases we choose to speak mean, we begin to transform our presence into a more welcoming and open posture of belonging.
At the conclusion of each chapter of My Body is Not a Prayer Request: Disability Justice in the Church, several exercises and projects are offered as ways of engaging with disability. These offerings, ranging from creating art to reading stories of disability by disabled authors (a personal favorite of mine is called Where You See Yourself, by Claire Forrest), to entering into conversation in community around accessibility needs all work to uplift disabled voices and cultivate spiritual love.
I hope that meeting the variety of voices and ideas around the complexity and beauty disability brings to our faith and our lives may bless and expand opportunities for deeper authentic interactions, leading toward faith-filled relationships and creative spaces that embody a spirit of wholeness here at St. Paul’s and in our own communities. Since we began with a story of disability, I’d like to close this portion of our time with a quintessential story of disabled joy from my own life.
(Step away and tell story): When I was diagnosed with cerebral palsy at six months old, the doctors told my parents that I may never walk, talk or function “normally.” When Beauty and the Beast came out in the early ‘90s, my dad carried me into the movie theater for my first movie, and I was in awe. After I learned how to walk at age three and a half, my mom took me to meet Belle and the Beast in person at Tower City. The line wrapped around the fountain, and we waited patiently for our turn, watching child after child run directly to Belle. Finally it was my turn, and without hesitation I bolted into Beast’s arms. Even from that early age, I somehow recognized kinship within difference through compassion and empathy. And with that, I’d like to open the floor for conversation. Thank you for your time and attention.
Works Cited:
The Disabled God: Toward a Liberatory Theology of Disability, by Nancy Eiesland (1994)
My Body is Not a Prayer Request: Disability Justice in the Church, by Dr. Amy Kenny (2022)
From Inclusion to Belonging: A Practical Theology of Community, Disability and Humanness, article from Journal of Religion, Disability & Health by John Swinton (2012)
Resources for further exploring:
Where You See Yourself by Claire Forrest
Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig
Sociability webpage and App
Disabled joy is real! Photo credit: Jim Ptacek
