Loop,Hook,Pull

Disabled at Birth and by Accident

At six years old I became shamefully aware that I was a profound stutterer. I did not grow out of the developmental affect of stuttering. Instead it became more pronounced from the psychological distress of being relentlessly teased by peers and playmates. While learning breathing and cognitive behaviors to minimize intense occurrences of conversational and professional stuttering from years of speech therapy, all efforts were lost when at 50 years old I suffered an acquired brain injury from a ski accident. Even before realizing the extent of my spinal and musculoskeletal injuries or grasping the magnitude of the rehabilitative process ahead, I realized that I had lapsed into acute stuttering again—soundless breaths; tongue-snagged F’s, M’s, and T’s; and aspirant vowels that evaporated before passing through my teeth. I became that six-year-old, again; only this time experiencing debilitating anxiety requiring immediate medication before a decade of rehabilitation.

Psalm 139:13–14 created a new quandary and evoked ever more distressing questions for God, my Creator. How could I see my stuttering self as intentional and my injured brain as wonderful, still?

While recuperating from yet another round of nerve study and strengthening physical therapies, I often crocheted to do something more than just sit there until the meds kicked in and the pain abated. One day, while crocheting a bouquet of pink roses for children survivors of a mother who succumbed to breast cancer, Psalm 139:13–14 revealed to me for the first time the glory of God, our Creator—of my disability of speech and mobility, and of her diagnosis as carrier of the BRCA1 gene—with every loop, hook, and pull through of the yarn in my hand and pattern in my heart! Knowing that knitting (in the text) and crocheting are both the creative skill of weaving skeins of yarn into useful garments and artful masterpieces, each loop, hook, and pull thereafter reframed the implicit and implied inferences that this text spoke only of the fittest, most perfect, flawless, ethereally beautiful, person who was abled. Ability and excellence, ability and favor, ability and ability are common narratives associated with a theology of being whole and perfect that is in need of a transformed theological narrative.

Disabled imago Dei

The narrative of disability in church culture—while challenged in Mephibosheth’s story (2 Sam 4) in which he was born abled, suffered injury that left him disabled, was exiled because of his disability, and remained disabled even after rediscovering his God-given favor at the King’s table; and in the blind man’s transformation (John 9) in which he was born blind, had his parents suspect of having sinned to cause his blindness, and being made to see by Jesus’ selecting him for this teachable moment—is often ignored in preaching and liturgy. It is not an unfamiliar experience of many disabled persons that unless there is a healing service where they are coerced into the healing line or are otherwise expected to get in it themselves, disabled persons are blatantly abused, generally pitied as broken, or wholly ignored.

Shifting the common or silent narrative theology of disability emerges as a liberation theology, correcting the notion that disabled is synonymous with brokenness in need of fixing or pitied as a disadvantage to fully participating in the life of the church. Imagine a Psalm 139:13–14 narrative that casts disability as but another reflection of the imago Dei and disabled persons are no less blessed while lacking the espoused sensory normalcy—eyes that see, ears that hear, tongues that speak, hands to feel, feet to walk, intellectual aptitude, cognitive behavior, and emotional appropriateness. To do so would liberate the disabled from not so uncommon shame and eviscerate abled superiority as preferred by God. To do so would get the church in pace with legal, cultural, and academic advances in accommodating, not just tolerating, disabled persons.

Who are the people with disabilities in your church? Do you know more than their name and a little bit about how they were born or became disabled? Have you educated yourself about their disability and what physical accommodations are needed to facilitate attendance and worship experience? Where do they serve and lead in the congregation? What processes are in place to train them to serve and lead? When you think about congregants useful to the vitality of your church, are any disabled? In essence, how is disabled personhood interpreted by your church’s storytellers—pastors, preachers, ministers, teachers, leaders, and congregants?

Reflecting on these questions might be the first step in transforming the narrative theology of disability in your church’s story. Believing that in each person we encounter more of God, to regard disabled persons as essential to developing the church’s story and advancing its mission is to encounter God in the diversity of abilities that is true of everyone in the congregation—living into 1 Cor 12, affirming the gifts of all and unity among believers. Practically, this calls for more than taking inventory of who is disabled; it requires a vested interest in commonly abled pastors and leaders to be transformed by intentionally knowing disabled persons as equals in the faith and family of God. After all, God looped, hooked, and pulled each of us through the same love to become kin in Christ and in Creation.

Do More, Do Better

Reasonable accommodations. That is the buzzword for public, academic, and corporate spaces to give the impression of giving access to disabled persons. Reasonable accommodations are reasonable only to the extent that it is not costly to the owner or inconvenient to the majority consumer. Reasonable accommodations are often translated as the least that can be done to appear to be disabled friendly. The church cannot be satisfied with being reasonable; we must move to radical inclusion and accommodation of disabled persons in our spaces—facilities and programs, leadership and spiritual formation of our leaders.

A small step to making a giant leap in creating a liberating narrative of disability might be expanding the occasional volunteer sign interpreter set off to the side and out of view of the video recording, to having the church become an approved internship site for sign language interpreter programs. Initiating this partnership takes the narrative of your church’s story into the world and elevates the visibility of deaf persons in a broader context as important to your congregation. As an approved internship site, the church would have the same interpreters—advanced students—for three to twelve months. This model incorporates the interpreter into the life of the church and brings consistent, skilled service to deaf congregants. Additionally, imagine the ministry opportunities when your church becomes known for having a deaf ministry within a hearing congregation! This loop could lead to the hook for forming a full-service deaf ministry as the signed Word pulls more deaf believers to see themselves as vital to the church because of this investment in more than a reasonable accommodation.

If the church’s sick and shut in list grows because disabled persons—by birth, injury, or age—cannot conveniently and independently access the building, this is another opportunity to change the disability narrative of your church’s story. Ramps, lifts, and designated seating should be basic not “special” accommodations. Care should be given to service these areas weekly and make maintenance a priority instead of a groan and afterthought to the budget. Remember, these are essential to disabled mobility like a proper running shoe to a marathoner. While the commonly abled parishioner may need neither, the disabled person relies on these for access and an enhanced worship experience. Often, homebound people are disabled people who would attend and participate in church life if attending was accessible. Simply repairing cracks in the sidewalk and installing door automation could be loops to hook disabled persons, often frustrated with even accessing the church building and sanctuary, to be pulled into regular attendance at worship, Bible study, and leadership training.

One of the most traumatizing moments during worship for a person with cognitive and mental disabilities is when the preacher demands they turn to their neighbor to talk, hold hands, or hug! Persons with cognitive and mental disabilities may be sensitive to stimulation and overstimulation is exhaustive. As one with an acquired brain injury, others also may not be able to interact on demand. Abled people for whom this time of fellowship is a joy may conclude that others appear to be unfriendly, standoffish, moody, or “just crazy” when actually, a disabled person may be staving off an anxiety attack, managing OCD or other phobias, or taking the time to figure out how to appropriately respond in sync with the cacophony of common responses.

Transforming the disability narrative for the congregation may include deleting the trite filler of neighbor engagement from sermons; teaching the congregation that a suitable alternative to the holy hug is a hand wave; and that a smile is as communal as is a handshake. We are not moody and mean, we are more likely adjusting to medication, or mitigating an anxiety-ridden public meltdown. Creating a culture where touch is explicitly consensual and optional, instead of an expected and implied holy activity, allows these persons to anticipate participation in communal exchanges of affection in ways that affirm their boundaries instead of being shamed into performing like the abled majority. Options to touching is a loop, accepting touch boundaries is a hook, and not being ostracized by our need of measured stimulation pulls us to trust that the people of God understand and accept our invisible disabilities.

This appeal is far from exhaustive, however. Begin with people with disabilities that may already be connected in some way to your congregation, solicit their ideas, support their deeper involvement, and then develop an intentional plan to truly accommodate others with disabilities and their families to be fully engaged in the life of your congregation.

To Do and Not to Do

Creating a narrative theology of disability and correcting common missteps in engaging disabled parishioners should include:

Refrain from saying, “But, you don’t look disabled.” This is judgmental and assumes that the disabled person is perpetrating a fraud.

Disabled Ability

Disabled people are abled people. We are fearfully and wonderfully made people with disability. We are God’s disabled marvelous works. Persons with disabilities are not leftovers or imperfections of God’s handiwork in the human. We are intentionally and purposefully made. We are disabled phenomenal beings—incarnate imago Dei. Being disabled with ability is no dichotomy; neither is being abled with a disability or limitation. Being disabled does not default to lacking aptitude. Disabled persons move through life differently; yet are as likely to achieve to their ability as are the commonly abled with proper and sufficient support.

In the context of transforming or forming a narrative theology of disability in the church, I know a rabbi who is paraplegic; a deacon who is blind; and I am a preacher who stutters and seminary professor with an acquired head injury. While we may be the exception, we are not particularly exceptional. Whereas I cannot say enough about our individual assertive self-advocacy, academic and professional support services provided accommodations to equip us for these ministries in the church, culture, and religious academy. Our greatest challenges to vocation and calling, however, are found in the church and church culture that espouse the survival of the fittest and God’s favor on the nondisabled. Even with the work we have done to redefine our Psalm 139:13–14 fearfully, wonderfully, and marvelously made selves, we often must make our own ways to show up able in the church instead of having the church make ways for us to show up.

Like anyone else, disabled persons in the church can perform rote, low-skill tasks. Others are brilliant exegetes and engineers. The point is respecting ways individuals are called to use their gifts in service. Unless their disability is physically obvious, many of us serve without full disclosure; often due to fear of shame, reality of shame of being different, and having our disability exploited as reason for excluding us from training, leadership, or other opportunities for full participation in congregational life and story. When a pastor leads a congregation in developing a disabled narrative theology, a practical theology of disability inclusion is forethought instead of afterthought. At the table of church leadership and service is the disabled speaking for themselves and the commonly abled accommodating the space and pace we need to be heard. Imagine the church as deficient without having disabled persons contributing to the church’s story; and imagine possibilities of untapped gifts and abilities when everybody in the church has equal opportunity to learn, serve, and lead—regardless of ability. Each of our loops, hooks, and pulls are necessary to construct the church of God’s imagination.

A New Narrative

While the Americans with Disabilities Act (ADA) does not require churches to comply, the church ought to be compelled to enact advances in disability accessibility in the church and society. This can only happen when the church embraces a narrative theology of disability that is radically intentional to see disabled persons as fully representative of God’s knitted/crocheted masterpiece of intricate loops, hooks, and pulls instead of the occasional divine or human mistake. The abled and disabled in unison of understanding that God is equally disabled and commonly abled can declare, “I will praise you, O Lord, for I am fearfully and wonderfully made. Marvelous are your works; and that I know right well!” Hope with me for the day that Psalm 139:13–14 evokes images of wholeness for all and lyrical praise for more.