Beyond the Wheelchair Ramp

RECENTLY, THE CATHOLIC CHURCH moved toward beatifying Archbishop Óscar Romero, who was martyred while presiding at a Mass in El Salvador in 1980. Romero preached that, for the love of God, soldiers and paramilitary forces must stop murdering their brothers and sisters—and he paid with his life. Many have since honored his witness during El Salvador’s civil war as “a voice for the voiceless.” Without a doubt, more of us should take on that mantle.

And yet. Sometimes we are notcalled to be a voice for the voiceless. Sometimes we are called to listen carefully and discover the voices in our midst. Sometimes we are called to consider whether weare the ones preventing voices from being heard.

We are almost 25 years beyond the passage of the Americans with Disabilities Act, and while access is still not all it should be, we need to move beyond the wheelchair ramp. We need to listen to those living with disabilities—as fully human, as fallen and holy, as friends of Christ, as people with abilities, as disciples on the Way.

What is disability? This simple question is not easily answered. There are people living with impairments, a loss of expected physiological form or function. A person missing a leg. A person whose optic nerve did not develop correctly. A person who has sustained a brain injury. The disability refers to the consequences of an impairment: loss of walking, blindness, memory issues. Handicap, in turn, refers to the societal disadvantage resulting from an impairment.

But when talking to people living with disabilities, those clear-cut categories become muddy. Some embrace the term “disability” as a simple aspect of who they are, a way of describing their lives and advocating for societal change. Others reject the term, saying they perceive no negative consequences from their impairments, only positives. Others fear the term and simply do not use it.

And the lived experience of people with disabilities varies widely: To live without hearing is not the same as to live without legs, or to live without an ability to learn, or to live with severe depression. Additionally, people’s attitudes toward their disabilities are in part shaped by whether they were born with them or whether they acquired them by injury, illness, or old age. We simply cannot make sweeping generalities about an experience of disability.

But those of us who are what Amos Yong, professor of theology and mission at Fuller Theological Seminary, calls “temporarily abled” can do two things. First, we can initiate relationship from a position of receptivity, of learning. While undoubtedly there are people with disabilities who need our help, our first move as brothers and sisters in Christ should be to take our place as the “younger” sibling: We are the ones needing guidance. We need to learn, from ongoing brother or sisterhood with the person, what we need to be in community together.

I recall answering the phone at a startup Catholic Worker house of hospitality to hear, “Hi, we’re from XYZ church, and we’re going to build 50 bunk beds for your shelter!” Never mind that it was a house that held 15 people max, family style. The intentions may have been good, but listening and learning what was truly needed would have been better. We needed bread and received a stone (Luke 11:11). We all need to foster relationships through a willingness to listen and learn, to recognize that our “elder” brothers and sisters have something to teach us.

Second, a simple way to defuse the negative cultural attitudes around disability is to recognize that as creatures, we are all inherently limited. Deborah Creamer, a theologian living with disability, offers this insight: Perhaps limits are good, or at least neutral. As an example, I can flap my arms as hard as I want, but I cannot fly, unless I board an airplane. Thatlimit isn’t seen as problematic: We adjust, adapt, and slow down. What if we saw impairments as a specific type of limit? Perhaps not all impairments need to be seen as tragic, or even problems. Undoubtedly, some are. But the first assumption should be more neutral. That way, limits can be acknowledged and negotiated as needed: We all have them. And we are called to help each other live with and through those limits.

What does it mean to listen as church?

Human beings are not good listeners. We hear what we want to hear; our antennae are often tuned by our own assumptions. Yet as important as it is to recognize this—to bracket those assumptions and really listen to a person living with disabilities—it is not enough. How do we as the body of Christ listen to people living with disabilities? The lived experiences of disability vary widely, but common concerns arise.

I offer three examples of life-honoring listening: listening for the voice of a culture, listening to challenge “the suffering card,” and listening to ideas that reorient everything. They challenge and improve the way we understand what it means to be the body of Christ.

Listening for the voice of a culture. Are there cultures created by groups of people living with disabilities? Almost certainly there are: Deaf culture is a prominent example, building in the U.S. and other countries on its particular language, ASL. If you have been to a prayer service crafted by and for people who cannot talk, or talk well, perhaps you have seen a culture at work among those who are low-verbal or nonverbal. There are subcultures as well: For example, get to know family members of a child with disabilities and you realize they are living in two worlds, including one that involves a parallel subculture of IEPs, insurance claims, doctors, and social workers.

Over the centuries, Western Christians have often approached different cultures with an attitude of disrespect, preventing new converts from adapting the faith to their home culture.  What would happen if we recognized and honored that people with disabilities often live in their own culture or subculture? Does the Christian message need to be enculturated, and if so, how?

Ben Conner, a theologian at Western Theological Seminary in Michigan, argues that any Christian participating in the Missio Dei (the Mission of God) must consider that outreach to people with disabilities is not simply a pious nicety but rather a call to be the church of one Lord, many cultures; and we begin by listening and learning about the other’s culture. We should also understand, and welcome, that people living with disabilities will proactively acculturate the Christian message.

A Catholic parish in New York City that was devoted to the deaf community (but open to all) was recently slated for closure as part of the diocese’s reorganization plan. While any such closure is sad, in this case the pain was compounded because the community wasn’t consulted in the process. Instead, there were weak assurances that accommodations would be made. But as many in the community noted, an ASL interpreter at liturgy is not enough. It’s also about the opportunity to proclaim the word in ASL, to “sing” in ASL, to receive the sacrament of reconciliation (confession) in ASL, to share in the joys and struggles particular to deaf culture. It seems no one at the diocesan level thought of those issues. All they needed to do was ask and listen. It’s essential that we recognize and honor the intrinsic human dignity of each person. But part of honoring human dignity is understanding a person’s culture, and allowing that person to express his or her insights regarding the Christian message. This is not abstract. Genuine community living teaches you all that you need to know, if you listen.

Listening to challenge “the suffering card.” Most “abled” people assume that disability involves suffering. And sometimes it does. People in chronic pain physically suffer. But too often it appears that the abled community, at best, is projecting suffering onto those with disabilities and, at worst, causing the suffering. At the Summer Institute on Theology and Disability in 2014, Yong argued that those who are “temporarily abled” often view people living with disabilities through the lens of suffering. But what if, he says, “the sense of suffering [of the person with disabilities] has to do with [his/her] self-perception of failing to live up to the values and expectations of others”—that is, those who are abled? Whenever the abled act in ways that communicate to those living with disabilities “You are flawed; let me help you”—no matter how well-intentioned—the helper simultaneously has made assumptions and negated the person’s human agency. What if more suffering is caused by paternalistic attempts to address the challenges of disability than by any physical pain?

The issue is complex, because we are called as Christians to help those in need, especially those who suffer. The challenge is to work with people with disabilities to discern their true needs. We can begin by not assuming that every disability creates suffering.

Listening to ideas that reorient everything. Finally, there are ideas that simply change the way we see the world. Well-known ethicist Stanley Hauerwas came to write theologically about disability while volunteering with a day program for the intellectually disabled in South Bend, Ind. Hauerwas, known for asking unexpected questions, did not disappoint: What if, he said, every college campus—particularly every Christian college campus—had a L’Arche community in the center of it? L’Arche communities create space where the intellectually disabled and abled share common life together. Two U.S. divinity schools do something similar: Western Theological Seminary and Duke Divinity School have “friendship houses.”

How would that vision of community change what we see as the purpose of education? Would it break through the ivory tower pursuits of privilege, achievement, and accomplishment? Would it put the focus back on learning not just from books but from community living? Would it make the college campus a little more tolerant, inclusive, peaceful, human, and humane? What if living well, in community with the intellectually disabled, became one of the goals of a Christian college education?

BACK TO ARCHBISHOP Romero. He truly was a voice for the voiceless, using his pulpit and influence to draw attention to the persecution of the poor majority in El Salvador. But let us remember the background story. Romero didn’t begin as a firebrand. Those who knew him describe him as bookish, shy, genuinely devout, and apolitical. His elevation to archbishop thrust him into a hothouse. Especially after the murder of his brother priest, Father Rutilio Grande, his role as pastor called him to listen to those grieving. That listening was the water to the seed of his voice.

While some of the most vulnerable do indeed need another to be a voice, many are best recognized as members of the body of Christ by listening—and by lifting the barriers that prevent full agency in the church. When we hear through Vanderbilt’s special education professor Erik Carter’s work that 90 percent of people living with disabilities in the United States are unchurched, we know something is deeply wrong. The first thing to do is to ask those living with disabilities: What should we do about this?

But there is a much deeper conversation waiting to be had here. As essential as it is to underline the humanity and dignity of all people, including those living with disabilities, it is only a first step. We need to value difference and practice genuine inclusion through listening, dialoguing, and assessing the real needs and desires of people living with disabilities. To read, “The eye cannot say to the hand, ‘I have no need of you,’ nor again the head to the feet, ‘I have no need of you’” (1 Corinthians 12:21) demands this. Living as the body of Christ insists upon nothing less.