Interpreting Disability/Inside Deaf Culture

January 23, 2006

Interpreting Disability is a refreshingly honest look at real life as faced by people with disabilities. Its three essays preface an important ecumenical statement on the place of persons with disabilities in the churches, called “A Church of All and for All.” The statement was drafted in 2003 by the Ecumenical Disability Advocates Network (EDAN), which Samuel Kabue directs, for consideration by all church bodies within the World Council of Churches. In the first essay Swedish pastor Arne Fritzson defines parameters for and consequences of discussing disability; in the next Kabue offers a personal account of his life with blindness; and in the final essay Kabue presents a historical survey of the disability movement.

Despite their brevity, these essays brim with insight and anecdotal, experiential truth. As a reader facing challenges from cerebral palsy, low vision and hearing loss, I appreciate the authors’ personal anecdotes about living with limitations, which corroborate my own experience. Kabue’s stories of being the reluctant subject of attempted healings recall similar instances in my own life. In one case, I was accosted and prayed for by strangers when I was on the way to a chapel service in college. (That I still made it to the service on time was the only miracle that day.) And in a second case, I was teaching English in Santa Cruz, Bolivia, and the well-intentioned healers were my own colleagues. Although my Bolivian friends never questioned the authenticity of my faith when no miraculous healing happened, their long and enthusiastic prayer vigil left me emotionally confused and exhausted.

Did my friends’ prayers for my wholeness reveal their unspoken assumption that without a perfect body I am not a whole person? As long as such assumptions go unexamined, the prevailing uncertainty about the presence and place of folks with disabilities in churches will continue. Interpreting Disability rejects the notion that disability necessitates cure: “The language of ‘loss’ is inadequate in characterizing disability.” Indeed, Fritzson and Kabue assert that people with disabilities have gifts beyond their disabilities, that they are not mere objects upon which God may act in power to cure. Disabled human beings display the plurality of the human family and consequently the plurality of Christ’s body in the world.

Fritzson and Kabue ask whether the presence of human differences (including qualities like disability and ability) absolutely defines our existence. Are not traits we hold in common more essential? EDAN’s statement names the image of God as “the possibility of becoming what God intends.” Interpreting Disability proclaims that human life, rooted in God’s loving intention, expresses itself fully in the crucified and risen Christ, whose vulnerable, loving life is a model for churches that embrace all people, regardless of ability or disability.

Inside Deaf Culture is a fascinating account of the rise of group identity among deaf people, primarily those who use American Sign Language. Carol Padden and Tom Humphries of the University of California–San Diego, both of whom are deaf, agree with Fritzson and Kabue that life with disability can be fulfilling. All four of these authors resist using the language of loss to describe disability.

Yet Padden and Humphries differ with Fritzson and Kabue on a key point. They contend that plurality rather than commonality grounds human existence: “Our common human nature is found not in how we are alike, but in how we are different, and how we have adapted to our differences in very human ways.” This major philosophical difference steers the two books in separate directions. Fritzson and Kabue call the church to become a more inclusive community for people of all abilities: a community grounded on the truth that God’s image is supremely expressed in Jesus Christ. Padden and Humphries, who are unconcerned with explicitly theological questions, make a sociological inquiry into the Deaf community in the United States.

Inside Deaf Culture marks the second joint project for Padden and Humphries. With their earlier effort, Deaf in America, they “tried to model a new vocabulary to describe the community” of deaf people. Central to this new vocabulary is the uppercase Deaf, a word that names participants in a culture passed down mostly through ASL. Almost 20 years after Deaf in America, anxiety about the decline of exclusively Deaf experience pervades Inside Deaf Culture. For Padden and Humphries, the source of promise in life with deafness is not primarily the Christian church with its inclusive goal but a vital Deaf culture free of influence from hearing people.

To show the durability of Deaf culture, Padden and Humphries recount past episodes of cultural challenge and success, and they draw on their own personal experiences to trace the process of entry into Deaf culture and to describe the close bonds forged there. (The chapter on the authors’ experiences especially held my interest because, like Padden, I adjusted to a public school for able-bodied students, yet, like Humphries, I grew up with few around me who shared my disabilities.) The final chapter urges the continuation of Deaf culture despite the technological and societal forces that threaten it. If cochlear implants make the possibility of hearing available to many deaf people, then they also jeopardize culturally shared Deaf experience.

Padden and Humphries shed light on the rise of Deaf schools, social clubs and theaters from the mid-19th to the mid-20th centuries—a history that is unknown to many—but unfortunately they ignore the Deaf church. Still, their book can enlighten Christian readers with its valuable stories of cultural formation.

Those who work for the rights of people with disabilities often wish to build accepting communities for all, but the kind of communities those advocates would build depends on whether they believe that similarities or differences define human beings. Though these four authors answer that question differently, their positions are not necessarily mutually exclusive. I have certainly experienced the loneliness that can follow from living with cerebral palsy, low vision and hearing loss. For instance, I often miss visual cues or threads of talk in noisy or crowded social environments. And although few of my friends have physical disabilities, I appreciate the unique bonds I share with others who face challenges similar to mine. Padden and Humphries make a laudable appeal that such bonds never be broken. Yet as one called to Christian ministry, I pray with Kabue and Fritzson that the church can indeed become a church “of all and for all.”

This goal of full inclusion leads to tough questions: What would a congregation look like if it were led by a minister or elder who is blind or uses a wheelchair? To lend clarity to such discussions, EDAN’s statement raises important hermeneutical and theological issues, giving space, for example, to both the gospel healing narratives and the doctrine of imago Dei. The statement also includes practical tips for churches seeking to be inclusive. But “A Church of All and for All” asks more questions than it answers. One passage especially remained with me: “If so many disabled people have [the] ability to come to terms with God, the church must surely find ways of accepting the gifts which we have to offer. It is not a case of meeting halfway but of full acceptance.”