A place for you

Cutout-People“All of God’s children were created by Him and are precious to Him! All of God’s children need the opportunity to learn about and experience His love and grace!” -Belief statement of Spring Hill Baptist Church’s Special Needs ministry

After hearing great things about Spring Hill Baptist Church’s inclusion of people with disabilities from VIA’s social worker last week, I decided to check it out for myself. I set out last Sunday morning to Ruckersville to their 9:00 family service. I pulled up to an old white chapel, surprisingly without getting lost. I remember registering a little surprise at the apparent lack of wheelchair accessibility; the old building seemed an unlikely candidate for a church conducive to special needs ministry. Brushing this aside for the moment, I walked in. A smiling greeter handed me a bulletin as I walked up the stairs and through the door.

According to their website, Spring Hill usually has three services: a family service and contemporary service at 9:00, and a traditional service at 11:00, with Sunday School in between. While trying to locate the family service, I heard the announcer say this was the last Sunday that the family and contemporary service would be held together in that sanctuary. Phew, I’m in the right place. After a momentary flashback to accidentally showing up to my first statistics class in the English department, I looked down the aisles of pews for an empty seat. The entire sanctuary was almost full! I spotted an empty seat about halfway down next to a kind woman who offered me a wave as I slid into the pew.

Although the crowd was fairly racially homogenous, I saw a couple of people who appeared to have physical disabilities, dancing and singing and hugging those around them. The sheer joy on their faces was striking. When we sat down for the children’s sermon, a woman brought an ironing board up to the stage. This would have been puzzling to me had I not grown up as a Southern Baptist myself, where I learned there is no limit to the props used during children’s sermons. I smiled as she explained the Transfiguration to the eager group of children, pointing to pictures of mountains on the overhead screen and using her iron to reveal a secret message on a piece of paper. Although I wasn’t sure about the European Jesus up on the screen, the children responded well to the multi-media message, clearly remaining engaged. Even some adults participated as the children’s minister called them out by name in the audience!

Finally, it was time for the regular sermon. The pastor built upon the themes of the children’s sermon, drawing on themes in Matthew’s account of the Transfiguration to encourage the church to get off the proverbial mountain and back into the world. Just as Peter, James, and John had an encounter with Jesus and then returned to ministry, so must we: “the Kingdom of God cannot be confined to things that are comfortable.”

The most touching part of the sermon came at the end. During the invitation the pastor gave, he invited anyone to come up for prayer. I noticed a young boy who appeared to have Down syndrome nudge his way excitedly through the aisle and grab his mother’s hand, leading her toward the pastor. Soon, the whole family was up at the front praying together. A huge smile spread across the pastor’s face as he laid hands on the boy and prayed with him. It was reminiscent of a conversion prayer, although I’m not sure the actual context. What was more important was the fact that the boy felt welcome–and was welcome–to come to the altar.

As the service ended, I looked at my bulletin and realized that there was a Sunday School class specifically for people with special needs. Unsure how to get there, my eyes scanned the room for people headed towards another building. After a few minutes of pretending to look over the bulletin, I eventually asked someone where to find the Sunday School classes. After a slight look of confusion when I told her I was looking for the special needs class, she led me to the correct room. Apparently there were two classes; I was taken to the adults’ room, but there was one for children as well.

There were seven adults in that room, two of whom appeared to have special needs. Riley* sat on one side of the table in a wheelchair, and Gerald, who appeared to be on the autism spectrum, sat on the other side. Each had a few helpers who would assist them if needed. I received a warm welcome from all, and soon the lesson began. We discussed the story of Jonah. The lesson was ample with opportunities to engage—a matching game, opportunities to read Scripture, even a time for singing at the end which was particularly popular!

The entire class appeared to be very well thought-out and tailored to the particular needs of each participant. Riley, who had an intellectual disability, was unable to read straight from the paper, but loved to echo the sentence-by-sentence reading of his nearest helper. Gerald lit up at the opportunity to use a tambourine to praise God in the singing. This is true hospitality.

Talking to the teachers after the class allowed me to learn more about the ministry. In addition to its regular inclusion of people with disabilities, Spring Hill hosts monthly game nights to which its attendance has steadily increased. I think I saw one teacher tear up as she described one mom’s reaction to the ministry: “Now my child has people to invite to his birthday party.” Families have driven from as far away as West Virginia to attend Spring Hill. I can see why.

specialneedslogo

In Places of Redemption, author Mary McClintock Fulkerson uses postmodern place theory to explore the theological meaning behind “place.” She uses the example of a “hometown” to frame place as meaningful, not because of its geographical location, but its “constellation of resonances.” Particular places usher us into particular emotional states. Seeing that old library you always used to go to as a kid might have any number of effects on you at that moment–disappointed because it’s not what it used to be, proud to see it still brings joy to children, even inspired to read more. Understanding the impact of the meaning of place for worshipping communities is the first step in making a church more inclusive.

This is a particularly powerful idea when we consider our own embodiment. We must not forget that our bodies are actual places, and the shape of these places carry societally given connotations which affect how we encounter the world. What our bodies look like—black or white, male or female, thick or thin, able-bodied or disabled—quite literally change our place in the world.

Under this mentality, going to church is most fundamentally about going to a certain place. It’s less about hearing a sermon than being in a space with other people. This is not a trivial distinction but one that claims there is actual content to be learned through embodiment in a different place. Most of our impressions of a church rest more on the environment it creates and less on the content of the preacher’s sermon. Because if we’re being honest, many churchgoers don’t even remember last week’s sermon!

Whether this is for better or worse, what it reveals is the fact that humans are fundamentally relational creatures. All of us. Our most central quality is not our rationality but our relationality. And a space which allows us to express that in all its diverse forms is one that can truly be called an inclusive community. I think Spring Hill is leading the way.

*Names of people have been changed to protect privacy.

Fulkerson, Mary McClintock. Places of Redemption: Theology for a Worldy Church. New York: Oxford University Press, 2007. Print.

The best analogy for the Trinity (hold your stones)

Trinity

If there’s one way to start a blog post as to ensure minimal readership, it’s by opening with Trinitarian theology. That’s my guess, at least, although Kantian moral epistemology might make a close second. But hold on, I promise it’ll get better. Hotly debated for centuries following Christ’s resurrection, this mysterious “three-in-one” conundrum has been key to Christian theological reflection, dubbing its advocates orthodox and its dissidents heretical since 325 A.D. (I’m looking at you, Arius!) It’s this particular theological concept which married co-authors Myroslaw Tartaryn and Maria Truchan-Tartaryn use to illuminate their understanding of disability in their book Discovering Trinity in Disability. The Trinity is pretty weird: the Father (or Mother), Jesus the Son, and the Holy Spirit are in some sense distinct from one another, but are all unified in another sense. The above picture is a famous work of art by Andrei Rubilev, the great medieval Russian painter of Orthodox icons and frescos. Despite the fact that each member of the Trinity is depicted as a European male, the picture is a powerful portrayal of the divine fellowship as understood by Christians through millenia. Each person is given the title “God,” and somehow there is only one of those, yet three of them.

The tension in describing the Trinity is one between coherence and incoherence. How obscure does our picture of God have to be before our speech loses its meaningfulness? Tartaryn quotes Augustine’s explication of the divine beings’ relationship to one another: “The triune communion is a consubstantial and eternal unity; but there is nothing but the persons” (Tartaryn 68). My translation of this: there is no magical Trinity-glue. In whatever sense in which the three persons of the Trinity are unified, there is no “extra thing” that binds them together. It is in their very nature as divine persons to be intimately connected to one another. I think this is part of the reason why the Trinity is so hard to explain. All analogies ultimately break down because there just isn’t anything truly comparable in our world to explain the mystery of the divine being. But I also think maybe we’ve been looking in the wrong places. I mean, eggs? Water? Come on, people. Are we talking about breakfast or God?

Although I absolutely believe there is value in parsing out the logicality of our views about God, I am learning that the most important part of this process is what it teaches us about how to love others better. Maybe, if we are made in the image of God, the best way to understand the Trinity actually lies in its application to the mystery of how we as humans relate to one another.

In a totally non-heretical way, I think human relationships are more like the Trinity than we tend to assume. The Tartaryns believe that there is relational power in modeling our relationships off of the Trinity. The fact of three distinct persons being totally unified in will and one in essence can be a compelling image of true community: a community in which unity and distinction are equally valued. Most importantly, the Trinity is an image in which unity and distinction are not mutually exclusive. In fact, they support one another: “Difference is the very foundation of relationship and does not need to be overcome in order to create community.” (Tartaryn 29)  Indeed, one cannot have community without difference. Difference enriches community, but it also makes it a lot messier. If the nature of community is dynamic rather than static, where relationships actually change who we are, it is only through diverse community that we can even aim at that goal.

…Which brings me to this week. I have been reflecting on the meaning and use of community, particularly with regard to the idea of charity. How do we give to others, and how are we to receive? In an environment such as the Virginia Institute of Autism (VIA) in which there is a clear presumed hierarchy of who is giving to whom (instructors give instruction to students), I wonder how we ought to think of our relationships with the students. Do they consist entirely of giving and receiving instruction, where the instructor is always the giver and the student is always the receiver?

An incident from this past week comes to mind: a daily routine gone haywire. It all started with an innocent walk back from the playground. William* dashed off the sidewalk into the parking lot, which he does not often do. Immediately alarmed, I ran after him and eventually attempted to guide him back to the sidewalk. This did not work as well as I had hoped. It appeared that William was heading for a parked car. When I finally caught up to him (6 year-olds are surprisingly fast), he was crying hysterically and trying to open the car’s door. He wasn’t terribly impressed with my attempts to lead him back to the sidewalk, either, biting my arm and intent on prying the car door open. At this point, a fellow instructor again called for backup, and soon I had help leading William back to the classroom. A few minutes later I learned that the car belonged to his parents, and that he probably just wanted to see them.

Later, as I was reflecting on this incident, I realized that earlier that same day William had given me a hug. For a child who has difficulty connecting socially, it was truly a heartwarming gesture. Yet an hour later, there he was, biting me in the parking lot. Community is nice and all, but it doesn’t feel so good when it’s biting you in the arm.

Sometimes moments like that cause me to think that the hierarchical nature of charity is well-founded. I am offering a service to William, and he receives it. “Charity” seems to be a better descriptor than “relationship.” When you think of “charity,” what concepts come to mind? The offering plate in church? The Salvation Army? Sarah MacLachlan holding a pit-bull? Whatever the immediate response, usually we think of charity in a way that subconsciously divides us from those to whom we are being charitable. Despite the fact that charity is understood as a way to aid other people, the word almost never indicates that there is an actual relationship between the two parties. Because the term “charity” is usually synonymous with “giving money to people,” or more often, “giving money to organizations who claim to help people,” I fear that it has become more about the giver than the receiver.

We give money to the malnourished child on T.V. but never allow ourselves to question the systems which contributed to this situation in the first place. We give to organizations to raise awareness about sex trafficking but would feel uncomfortable developing a relationship with a teen prostitute. We give money to organizations who provide weekly lunches for the homeless, but inviting a homeless man to our house for dinner is out of the question. We will give money to causes till kingdom come as long as it allows us to remain relationally “safe.”

Money does not change the world. Relationships do.

Like the Trinity, real relationships are messy. Charity, in this sense, can sometimes be the opposite of relationship. I think I’m learning that there is really no such thing as a pure give-or-take relationship. For better or worse, all relationships change their participants. We can either use people with disabilities as a platform upon which to practice our morality, or allow the presence of the different to usher us into a consideration of our own inherent vulnerability. It is not a choice to be taken lightly.

*Names of students at VIA have been changed to protect their privacy.

Tartaryn, Myroslaw and Maria Truchan-Tataryn. Discovering Trinity in Disability: A Theology for Embracing Difference. Maryknoll: Orbis Books, 2013. Print.

Autism and the church

Autism Acceptance

Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.”

–Luke 14:12-13

“BRINGGG! BRINGGG! BRINGGG!” I woke up to my 7:30 alarm last Wednesday in a foggy daze. In the midst of my daily decision weighing the pros and cons of hitting snooze, I remembered that today was my meeting with the social worker at the Virginia institute of Autism (VIA). I had scheduled a meeting with her in hopes of learning more about the scope of resources available to families affected by autism in the community.

As I walked by my classroom and stood by Linda’s* office that morning, she welcomed me to come in and sit down as she finished up an email. After exchanging pleasantries, she began by telling me about her role at VIA, which consisted of everything from marriage counseling to program development. “There is much more to caring for a child with autism than just sending that child to the right school. Autism affects all aspects of a family, and the amount of stress it can bring on is overwhelming.” She went on to talk about the high divorce rate among families of kids with autism (as high as 80%), and told me about a new sibling support program for siblings of these children, an often overlooked group. “Seemingly everyday family activities are wrought with stress and anxiety— something as simple as going to Walmart can turn into an exhausting battle.” She cited that 40% of the kids at VIA qualify for free or reduced lunch, and the fact that many of these families are near the poverty line means the number of daily stressors is even higher. “Not being able to leave your child alone for any real period of time—being constantly afraid that he will hurt himself or one of us—that’s tough.”

Having worked in disaster relief after 9/11, she compares her role with many VIA families to that of a grief counselor. “I know a mom who, despite being told repeatedly that her son will never speak verbally, continues to spend money she doesn’t have on extra speech services. She just thinks, ‘if I get him the right supports, if I do enough, he’ll speak.’ When that doesn’t happen, when the disability becomes more and more real as the child grows up, you go through different periods of grief. When a mother realizes she will never hear the sound of her daughter’s voice reading a book, that can be shattering.”

Her background of social work in low-income neighborhoods and faith-based nonprofits taught her to look at helping people from a holistic angle. This wasn’t just about autism, it was about families. “I don’t think I could have come to this job straight out of school,” she said, citing the difficulty of the breadth of the work. “The biggest part of my job is connecting families of children who are newly diagnosed to resources in the community, even if the child does not attend our school.” Her warmth and passion for her work shone through everything she explained.

When I told her more about what I was interested in exploring through the Project on Lived Theology, she nodded as her eyes became wide. “One of the number one complaints I hear from families is that they have nowhere to attend church. They feel their child has no place. Often, parents are forced to choose between bringing only part of their family to church or staying at home.” Unfortunately, many choose to stay at home. Linda could think of one church in the area that has a ministry for people with special needs. An oft-cited statistic is that 90% of families of children with special needs are kept from attending worship services.

What does it say about God’s Kingdom when these kids are more welcome in a public school classroom than a Sunday school classroom?

In Vulnerable Communion, Dr. Thomas Reynolds recounts his own experience of having his son, Chris, kicked out of Sunday school. He received a call from his Methodist minister representing the concern of several mothers concerned with Chris’ “bad behavior” during Sunday school. These accusations were not without reason; as Dr. Reynolds notes, Chris engaged in “verbal outbursts that sometimes involved profanity, a lack of sensitivity to other children’s personal space (occasionally biting them when irritated or provoked) and an unpredictably violent imagination when playing with toys” (Reynolds 11). In this case, the mothers’ concern was that Chris was a bad influence on their own children. However, one does not have to call Chris’ behavior desirable in order to see that including him is important.

A large part of the disability rights movement outside the church has been recognizing the potential of all children to succeed if given the proper supports. It is no secret that most children with autism do not succeed in a regular education classroom alongside typically developing peers. Suppressing their differences only creates more problems. But equally important is the realization that there are areas in which every student can succeed. Dr. Reynolds describes that his son “thrives in some circumstances, but not all.” This much has been made clear to me in my time at VIA, seeing the hope in parents’ eyes when they realize that there is an educational environment in which their child can flourish.

Maybe Chris’ Sunday school classmates would have been impacted by his behavior. But I question why this impact is considered negative in a Christian context. If we want our children to grow up well-versed in the art of distinguishing normal from abnormal and inadequate at loving those who are different, why in the world do we want to follow Jesus?

Over and over again, Jesus resisted traditional religious authority in favor of inclusion. Associating himself with lepers, swindlers, prostitutes, Jesus was not exactly “family-friendly.” Disability rights advocate Lenita Coleman Brown discusses how stigma most fundamentally results from the fear of difference—we fear what we don’t understand: “As the developmental literature reveals, fear is not a natural but an acquired response to difference of stigmas”(Brown 150). Stigma is a way for us to cognitively process difference without getting too messy in the process. But we miss so much when we do this.

Too often we forget that the body of Christ, while divine, was brutally broken. Why should the metaphorical body of Christ look any different? We are all broken. Some of us are just better at hiding it than others.

*Names of faculty members at VIA have been changed to protect privacy.

Brown, Lerita Coleman. “Stigma: An Enigma Demystified.” The Disability Studies Reader. Ed. Lennard J. Davis. New York: Routledge, 2013. 147-160. Print.

Reynolds, Thomas E. Vulnerable Communion: A Theology of Disability and Hospitality. Grand Rapids: Brazos Press, 2008. Print.

Listening and a blue swing

Puzzle Pieces

“There is no safe investment. To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.” – C.S. Lewis, The Four Loves

Ours is a society which values the written word. And not without reason. Words are powerful—they have the ability to express emotion, unify people, even change a mind. What’s that old saying? “The pen is mightier than the sword”? Where would we be without works like Uncle Tom’s Cabin or Elie Wiesel’s Night (or the Bible, for that matter)? Words change us. But I fear that sometimes the elevation of the written word comes at the expense of the devaluing of other forms of communication. When you picture the idea of “communication,” you’re most likely to imagine words in one form or another. Nonverbal communication, such as body language or augmentative communication devices (like the ones used by the students at the Virginia Institute of Autism) may not be the first things that pop into your mind.

Certainly, this is no grievous sin, but it does highlight what I think is a discernibly negative consequence of the written word’s supremacy. It has to do with vulnerability. This is a theme I feel resurfaces in every book I’ve read for this internship. All communication, written and otherwise, necessarily entails varying degrees of vulnerability. When you communicate with another, you open yourself up to the possibility of being misunderstood; there is never (ever) a foolproof method for ensuring another’s complete comprehension. Interestingly, it seems to me that we assume the written word is “invincible.” We consider it the most professional and efficient means of communication. The success of an academic’s career, for example, depends in large part on the success of her written publications. But even the written word is far from universally communicable. Disregarding the fact of the many different languages in the world, the written word certainly doesn’t mean much to the 774 million people in the world unable to read.

I wonder: is there any form of communication that is truly universal? I think Taylor* has given me the answer to this question. Yesterday I sat working with him at his desk at VIA just as he had earned a break. Because Taylor is nonverbal, and uses an app on his school iPad to communicate, the words he is able to say are limited to what VIA instructors have made available on the iPad for him to say. He chooses pictured icons corresponding to words, and in this way is able to communicate his wants and needs to us through basic sentences like “I need bathroom” or “I want Little Einstein’s.” Yesterday it was “I want blue swing.” VIA has a wonderful playground behind its classroom buildings, and there is a certain blue swing Taylor loves. So we started making our way outside. Before I knew it, he began to act out. Veering off to the school’s track, away from the playground, Taylor was making sounds which suggested he did not in fact want to be anywhere near the blue swing.

In these situations, instructors are encouraged to prompt the child, “Hey, I don’t understand. If you want to tell me something, you can use your voice!” with the “voice” referring to the child’s iPad. Again he repeated, “I want blue swing.” Alright, I thought, hoping against a repeat of the previous hair-pulling incident. I guess we’ll give this one more try. Still appearing noncompliant, Taylor nevertheless made it to the blue swing. Unfortunately, things did not get better from there. Quite the tantrum commenced; crying, screaming, throwing—the whole shebang. Yikes.

Thankfully, the school’s occupational therapist was also out on the playground. Shooting me a sympathetic glance, she came over and tried to gain control of the situation. When Taylor’s tantrum only escalated, she pulled out a walkie-talkie and murmured something that sounded like spoken Morse code. While I was still trying to figure out what in the world she said, and if she was secretly in the CIA, I saw two instructors from my classroom literally sprinting out to the playground. This really is some sort of secret spy operation, I gaped.

The odds shifted when they arrived: it was four to one, and much easier to control Taylor’s behavior. As we were finally walking back, I expressed my confusion over the situation to Laura, heroic sprinter #1. “I don’t get it—he kept saying he wanted the blue swing, but he clearly didn’t actually want it.”

She thought for a moment and replied, “What may have happened is that he wanted to walk around the track, but didn’t know how to ask for it. It’s a new icon we’ve added, and he doesn’t really know how to find it yet. We probably should have guided him to that icon on his iPad so he could ask for it.”

Oops. “We” definitely means me. Although I sensed no animosity in Laura’s response to me, it did make me realize my true error in that situation. Taylor clearly did not want to be on the swing. But, as a member of this society which prizes verbal communication above all else, I assumed that Taylor’s words were more meaningful than his nonverbal communication and directed him toward the swing and away from the track. His body-language communicated a different message than the words he spoke through his iPad. The lesson I learned was this: especially for people who tend to use alternative forms of communication, we need to be good listeners. Listening is irreplaceably important. And oftentimes it is just when we think we are doing a fine job of listening that we are in fact utterly failing. For the other person, the experience of being misunderstood is aggravating at best and painfully wounding at worst. The consequences are often so much more than a temper tantrum on the playground.

But listening is also often very hard. This week I’ve been reading Places of Redemption by Mary McClintock Fulkerson, who writes an ethnography of Good Samaritan Church in Durham, North Carolina. Recognized as a significantly racially diverse church (a status applicable to less than 10% of churches), Good Samaritan also has many members with disabilities. Their outreach is shaped by the drive to reach out to people ‘not like them,’ largely out of the story of the Ethiopian eunuch as described in Acts. As Fulkerson writes, “The eunuch became a symbol to them for those ‘people who are different from us, people who usually are looked over and passed over, that regular established church folks would pass on the street’ and never think of in relation to their church.” The way this community defines faith—as a networked transformative project rather than merely a set of beliefs or moral laws—is central to the way they have incorporated so many different people into their fellowship.

Good Samaritan UMC

All of this fits together. Listening is hard because it means conceding the control we crave in relationships. It is all too easy to interpret someone as saying what you want them to say rather than what they are actually saying. To truly listen is an act of will which tells the other, “You are free to be who you truly are, and I will accept that.” This takes courage and an openness to being wrong which overshadows our death-grip on control.

I think what Taylor taught me yesterday was that it’s sometimes the less obvious forms of communication which speak clearer than the traditional written word. Nonverbal communication often requires more vulnerability precisely because it requires us to be better listeners. Faith, like other relationships, is potentially life-changing because it is necessarily dynamic. It’s only through good listening and open vulnerability that we can begin to let God transform us and our communities to what we were created to be.

*Names of students and instructors have been changed to protect privacy.

Fulkerson, Mary McClintock. Places of Redemption: Theology for a Worldy Church. New York: Oxford University Press, 2007. Print.

Jesus, the disabled God

The Disabled God

 

“The disabled God embodies practical interdependence, not simply willing to be interrelated from a position of power, but depending on it from a position of need.” –Dr. Nancy L. Eiesland

Although I’ve technically been working at the Virginia Institute of Autism (VIA) for over a month now, it wasn’t until last week that I think I was officially inaugurated. I was sitting at the kids’ kitchen table helping a student with his breakfast when I heard a rush of steps behind me. Thump thump thump… “OUCH!” I was nearly dragged out of my seat by one of our newer students, David,* who decided to grab a handful of my hair on his way to the playground. Before I realized what was going on, his instructor snatched away his hand and led him to the door, apologizing profusely. It was nothing serious (although I do remember looking much more to the left than usual that day), and I learned that incidents like that have happened to most of the instructors in my classroom. Later that day during recess, a fellow instructor called to me, “Glad to hear you’re officially one of us!”

At the end of that week, I met up with my supervisor for a routine check-in to make sure everything was going well. We ended up discussing some of David’s behavior as she pulled up a chart cataloguing his misbehaviors this past month. As I asked questions about his development and previous schooling experience, I noticed how difficult it was to keep from invoking the concept of “normalcy” into the conversation. David does not fit in well to existing paradigms. While it is true to say that he should probably learn to stop pulling people’s hair, referring to all of his behavior as “problem behavior” can sometimes cause us to forget the complex nature of his personhood. It is much easier to view someone in terms of how they relate to one standard or another rather than to define them on their own terms. It’s a problem Dr. Nancy Eiesland describes well in her book The Disabled God as a woman with disabilities herself.

I have to admit, I was a bit apprehensive about this week’s book at first, due to its label as a work of liberation theology. As someone who tends to highly value a rational approach to questions of faith, I’d heard less-than-favorable evaluations of liberation theology as “highly emotional” and “subjective” in the past. Dr. Jones, my theological mentor for this internship, explained to me that, indeed, there are some who conceive of liberation theology as simply “ideology hacking Christian thought” rather than legitimate theological reflection. He did so while gesturing toward the bookshelves above his desk, which held all the sorts of theology I never knew existed: black theology, feminist theology, queer theology, Latin-American liberation theology, and more.

I’m realizing more and more how little I know of theology. In reality, I’d only had experience with systematic theology—which attempts to answer theological questions in an abstract, purely rational, and therefore objective, systematized way. Liberation theology came along and said “NOT SO FAST, BUCKO,” making the point that theology has always been bound to context because knowledge is always mediated through a subject–the person. This is true of all thought—even systematic theology. Although it prides itself on its objectivity, systematic theology is often bound to the context and experience of highly educated, white men. But don’t call Francis Schaeffer on me just yet. Realizing that all knowledge is mediated through a subject does not necessarily make the knowledge itself subjective in the sense that there is no universal truth. It does call our attention back to the mediator and clue us in to what the person’s context tells us about the knowledge itself.

As you can imagine, this makes theology pretty messy (as if Christian theology weren’t messy enough already). There are lots of different people on this little blue-green planet, each with a unique story and outlook on life. The picture is one of chaos, no doubt. But I’m told that some of the best things in life are messy, especially genuine relationships like the ones instructors at VIA have with kids like David. The mess arguably makes theology a lot more interesting, accessible, and meaningful in everyday life.

This is exactly the aim of Dr. Nancy Eiesland in her work, The Disabled God. Through her experiences as a woman with disabilities, she strives to construct a more subject-centered paradigm for the theology of disability. Rather than merely being objects upon which people without disabilities do research, people with disabilities are given a voice. And more importantly, the Christian God is seen for what He truly is: a disabled God. Eiesland conceived of the Incarnation as God voluntarily disabling himself. At first glance, this does not appear to be terribly revolutionary thinking—Christian thought has recognized God’s taking on human limitations for millennia. However, framing the Incarnation as the taking on of a disability is the perfect example of theology which connects the mundane with the holy—for it connects Jesus’ experience as a human with the experiences of other limited humans. Not only does Jesus enter the world as a body, with all the quirks and particularities each body uniquely has, this body is beaten and broken. Even when he is resurrected, the scars are still on his hands and feet. Rather than being a sign of weakness, they are a sign of his true identity and a mark of his love. This blasts away conflations of disability with sin. The Incarnation is “a divine affirmation of the wholeness of nonconventional bodies” (Eiesland 87).

CrucifixionI realized that I’ve been playing into these notions of the “cult of normalcy” even in the way I describe this internship to people. The key line I always used was: “I’m reading and writing about how the Christian church can learn to better serve individuals with disabilities.” This sort of service language only widens the gap between “us normal people over here” and “those disabled people over there.” I no longer think that learning how to better serve people with disabilities is what the Church needs. This is arguably a dangerous attitude which can give us a messiah complex and turn disability into something to be treated rather than a person to be known. I believe what Christians need is nothing less than an entirely new way of thinking about and relating to people, including themselves. This requires a fundamental anthropological shift which privileges mutual vulnerability and interdependence as the new ‘norm.’ Time to cancel that subscription to the cult of normalcy, people. I don’t believe anything less will do.

*Names of the students have been changed to protect privacy.

Eiesland, Nancy. The Disabled God: Toward a Libertory Theology of Disability. Nashville: Abingdon Press, 1994. Print.

Runaway fruit snacks and the “cult of normalcy”

What is normal?

“You are not just being generous, you are entering into a relationship, which will change your life. You are no longer in control. You have become vulnerable; you have come to love that person.” – Jean Vanier

“Sarah*… Sarah… Just a little more work until break.. Sarah, look at me, please.. You’re so close to–WAIT, PLEASE DON’T EAT THAT FRUIT SNACK OFF THE FLOOR!” I said last Thursday as I rushed out of my seat to keep Sarah from eating her classmate’s stray fruit snacks. As I get more and more comfortable working with the children at the Virginia Institute of Autism (VIA), I’ve been able to work with them more and more independently. Last Thursday was the first day where I was able to work independently with one student for nearly the entire morning—and what a morning it was!

Although Sarah has very few behavioral issues in general, she struggles to pay attention to her instructor. I had observed this before when she was working with other instructors, but the problem appeared more pressing now that I was responsible for reviewing material with her. It made sense: difficulty paying attention is a key mark of individuals with autism. But when it is my job to teach her, how should I handle the situation?

When I realized all hope of getting any more work done was lost and that my best bet was to guard the room’s fruit snacks, I took a second to gather my thoughts. I took a deep breath. Sarah wasn’t running off from her desk anymore, she was just sitting. But she was doing more than just sitting. I noticed her looking off out the window. It didn’t look like she was focusing on anything in particular, but I got the feeling that she was seeing a lot. And in a non-cynical way, it didn’t bother her that I had been trying to get her attention for 10 minutes so she could finish her activity. It didn’t bother her that Charlottesville taxpayers’ money was going towards her education. All that mattered to her in that moment was—well, I don’t know. She had no way that I could understand of communicating that sort of information to me. I was faced with no other choice than to simply “let her be the way that she is.”

This phrase seems simple enough, but it is packed with theological significance. This week, I’ve been reading a truly delightful book entitled Vulnerable Communion: A Theology of Disability and Hospitality written by theologian Dr. Thomas Reynolds, a man with a very personal connection to questions of disability. His son, Chris, has several developmental disabilities, and from this first-hand encounter, Dr. Reynolds launches a revolutionary theological anthropology which works to empower individuals with disabilities. In his book, Dr. Reynolds spends much time discussing this idea of the “cult of normalcy,” arguing that concepts of “normalcy” are entirely socially constructed, hegemonic oppressions of all deemed the “ab-normal” and are ultimately the only reason why a conceptual category of “disability” even exists.

The only way disability has been defined has been in contrast with the normality of “able-bodied-ness.” And even this is a huge illusion! What do we suppose able-bodied even means? Able to care for oneself? Autonomous? Reynolds offers a powerful critique of autonomy as the measure of personhood by highlighting the centrality of dependence in our society: “For example, we spend the first two decades of our lives being trained to become independent members of society, and increasingly spend the last decades of our lives tethered to life-supporting medical care of some sort or another.”

Furthermore, even during our truly “autonomous” years, true autonomy is an illusion. We are all emotionally dependent on others to a certain degree; to discount this is to commit the all-too-common error of privileging the mind over the body. We choose to live in societies which are quite literally built on interdependence. If Farmer Joe doesn’t work, I don’t eat. Self-sufficiency is really a paradox, because only through dependence on others are we freed to meet our full potential. There is a certain level of trust that must be present simply in living—trust that can easily be broken because relationships are unpredictable. In many ways, people without disabilities are subject to the same sorts of physical and emotional limitations as are people with disabilities. The difference is quantitative rather than qualitative.

It is along this exact vein that Dr. Reynolds advocates his revolutionary understanding of theological anthropology. At the center of our humanity is not ability, but interdependence. He rejects Western notions which privilege efficiency, productivity, rationality, even equality! For even equality is necessarily socially constructed. (Equal.. to whom? The white, middle-class, non-disabled male?) These ideas all are dangerously coupled with the “cult of normalcy.” Reynolds quotes Stanley Hauerwas’ apt summation of the problem: “None of us wants to be treated equally if it means we lose our distinctiveness (Reynolds 82).”

Capitalistic ideals advancing wealth generation have perhaps inadvertently contributed to a view of humans as nothing more than “bodily capital,” good for their consuming and performing power, and deficient insofar as they lack the ability to do either independently. Practically, this amounts to a transactional view of relationships in which the relationship exists for the betterment of both parties. If one party ceases receiving this benefit, the relationship is put in jeopardy.

I began thinking about how I was, consciously or unconsciously, applying these ideas of “normality” to my interactions with Sarah the other morning. Despite the fact that I knew she did not fit into this concept of “normal,” I still held expectations of her that she perform in accordance with this scale. I thought I was “helping her be more normal.” But she resisted that.

While Reynolds does believe a paradigmatic change in the way we think about ability is warranted, he does not for a moment suggest that relationships between those with and without disabilities should be “one-way.” He strongly resists that pity or charity be the motivating factor for helping these individuals. This would amount to simply a different kind of oppression where those with disabilities are instrumentalized and seen as valuable only in their contribution to the moral development of those without disabilities. The relational model for Reynolds is still technically transactional, but in a different way. Individuals with disabilities give us gifts, but not the sort of gifts we likely were expecting. It is not moral progress or proof of instructional competency that Sarah gave me, but the gift of her own vulnerability. She welcomed me into the way of her own unique being–a gift only she could give. Neither did I give her the gift I was planning on giving. Rather than teaching her to recognize four dots on an index card, I gave her the gift of being there with her—of gaining more understanding of her “way of being.”

It is this “attunement to the other” that Reynolds notes as being necessary for compassion, which literally means “feeling along with” the other. His anthropology is more than just theological jargon; it teaches us to love others and ourselves better. Seeing what we all as humans have in common rather than what the “cult of normalcy” dictates we ought to have in common eliminates the pressure to conform to a socially constructed, tyrannical ideal. We are free to see others and ourselves as we really are.

What is the most human thing about us? The need to belong and be recognized as of value. How beautiful that this is exactly what Christianity teaches: you are loved, you do belong, you have infinite value. Thank you, Sarah.

 

*Names of students have been changed to protect privacy.

Reynolds, Thomas E. Vulnerable Communion: A Theology of Disability and Hospitality. Grand Rapids: Brazos Press, 2008. Print.

 

What’s so great about being human?

JV-Quote

 

Last fall at U.Va., I took Dr. Paul Jones’ class on “Elements of Christian Thought.” It is considered one of those “must-take” classes by many of my friends, and I was really looking forward to reading some of the church fathers. Aside from referring to him as “John Paul Jones” in my first discussion section, I thought the class was going pretty well. Until we got to the debates about the theological significance of the nature of Christ, that is. Was Jesus 100% human and 100% divine? Was he either all divine or all human? Was he 99% human and 1% divine with a dash of salt? This was one of those moments where I started to get annoyed with Christian theology. How much does a later theological label on the saving work of Christ really even matter? It bothered me that ideologies that didn’t really seem THAT out there were labeled as “heresies” by the Church. Specifically, the Church’s stubborn insistence on the humanity of Christ threw me for a loop. I’d been in Christian circles my whole life, so I was prepared to give some sort of an answer (mostly centered on the logic of the atonement) should anyone else express a similar concern to me, but there was still something about it that didn’t sit well with me.

Okay, now flash forward almost a year. This week I’ve been reading a wonderful book by Jean Vanier called Becoming Human.  Jean Vanier is a Catholic philosopher, theologian, and humanitarian passionate about including individuals with disabilities. In 1964, he left a prestigious teaching job to found L’Arche, a now international group of communities in which people with disabilities live together with able-bodied assistants. These groups center on the importance of community between diverse individuals and seek to embody the characteristics extoled by Jesus’ beatitudes (Matthew 5).

The way Vanier speaks of those with whom he lives — constantly referring to them as friends or teachers, only using the language of disability when it is unavoidable– reveals his deep commitment to the presence of the Imago Dei in all humanity. In his book, he speaks on the beauty of what he calls the “simple relationships” he has enjoyed with his friends at L’Arche. Far from making a condescending statement, Vanier is making a profound distinction between what can sometimes be the overly serious world of the mind and the celebratory world of the heart. As he states, “It has brought me back to my body, because people with disabilities do not delight in intellectual or abstract conversation.” Embodiment is key for Vanier.

This is something to which I can relate, having spent a few weeks at the Virginia Institute of Autism (VIA). Because most of the children in my classroom experience trouble communicating (almost all use iPads to speak rather than their voices), at first glance one might think developing a real relationship with them would be difficult at best. I know this was my thought a few weeks ago. And indeed, this is a common misconception about people with autism. Despite often significant difficulties with social interaction, they do not seem to need it any less. Sometimes, these methods of communication are simply more limited, and it takes the right supports to be able to engage these children in a way that allows them to express themselves. Take one student in our class for example: Corey. His favorite thing to do is play with pens. Talk about the simple things in life! He doesn’t even write with them, he just holds them and stares at them skeptically. Pens are the key to his heart. Or take for example Maria, one of the few students who does use spoken words to communicate. You will probably be met with a blank stare if you ask her what her favorite TV show is, but repeat the line “Clifford, come!” to her a few times and a huge grin spreads across her face. I think this is the kind of “simple relationship” that Vanier discusses. Everyone enters into the “world of the heart” in a different way, and sometimes it is through these simple connections that bring two people together more than anything else. When you are nowhere else but completely present with someone, is that not the best gift to give them? I think being and feeling “known” and understood is one of the most fundamental needs of a person. What a joy it is to find such pleasure in embodiment itself!

Vanier’s main project through the elevation of embodiment was to “become more fully human.” But as I begin to think about this in a more abstract way: what is so great about being human? It seems like if you ask most people, the whole “being human” thing is at best a mixed bag. What makes it an intrinsically good thing to embrace trauma, heartache and disease alongside friendship, love, and health? Humans appear to be the only creatures that feel this unique need, even conceiving as “noble” this thought of “embracing one’s full humanity.” Let me know if you see any frogs vigorously theorizing about how to make the most of their frog-ness.

Upon first glance, I judged this to be an unnecessarily pietistic and potentially prideful attitude towards human life. What’s the use in trying to make the entirety of “humanity” out to be worth pursuing on its own end when it is not clear that “humanity” really is all that and a bag of chips?

Now, I don’t know how much chips impact the quality of one’s humanity (although I can vouch for pretzels), but I began to see Vanier’s point when I considered its rich grounding in Christian theology. And it brought me back to my annoyance at that lecture almost a year ago. Just as I was brushing off the nobility of this pursuit of being human, I realized that on this very pursuit lay the whole of Christianity. In my last post, I mentioned the idea that God may be better explained by his actions in the world rather than his abstract attributes. According to the Christian story, the incarnation– the story of God himself becoming human– is not only the way in which God chooses to reveal himself to the world, but the mechanism through which he saves. For me, this also brought new meaning to those centuries-old debates about the divinity and humanity of Christ. It is precisely because Christ saw fit to enter into humanity that this is such a worthy pursuit for us. The significance of this doctrine is not merely abstract; it is profoundly personal. This absolutely central claim of a deeply relational God is what gives Christianity its uniqueness. The only way to follow Christ is to embrace humanity in the way he did. In a sense, becoming human is the most divine thing you can do.

*Names of the students at VIA have been changed to protect their privacy.

 

Vanier, Jean. Becoming Human. New York: Paulist Press, 1998. Print.

 

Bonhoeffer and the theology of disability

Theology and Disability

“To love another person is to see the face of God.” -Victor Hugo

I can picture it now: I was sitting near the stir-fry bar in Newcomb dining hall cramming for my Hebrew Bible exam in early December when I was presented with a welcome distraction. No, I’m not talking about the fish tacos. I received an email that morning from the manager of the Project on Lived Theology, asking me to advertise something about some random summer internship to a Christian apologetics club of which I am a part. I had never before heard of this organization, and suddenly I forgot entirely about my previous task of learning to spell “Tanakh” correctly (come on, Hebrew!) and became entrenched in finding all information I could about this initiative and its summer internship.

Having wiffle-waffled in my own personal view of theology in recent years, I knew I had always struggled to see it as valuable in its own right. Although I was drawn to the idea of worshipping God with one’s mind, I usually left even charitable discussions of theology with a nagging emptiness indicative of wasted time. “God’s relation to time is really, really cool- but what does this say about how I am to relate to God and other people? How does this teach me to love other people better?” Theology was for me, at best, interesting intellectual gymnastics, and I regarded my own interest in it as selfish. At the same time, I really thought there was something to the idea of “worshipping God with your mind,” but usually confined this to what I believed to be necessarily a relational and evangelistic use of apologetics.

Flash back to Newcomb. Pieces started to fit together like a puzzle. I am double-majoring in speech therapy and religious studies, and I was looking for an opportunity to delve deeper into something related to either of those over the summer. Usually when I explain my major to people, I am met with a confused look and/or awkward silence to which I reply “Yeah… I know they don’t really go together… I don’t really know what I’m doing with my life.” It only goes downhill from there. I have gotten all sorts of career counseling, from “You could teach communications at a Christian school!” to “You could help preachers with speech impediments!”

So naturally, when considering a program whose goal is to integrate theology into the banality of everyday life rather than segregate it, it did not take me long to decide to apply. And here I am! One of the things I love about the Project on Lived Theology is how individualized each internship can be. I was encouraged to pick an issue that mattered to me, spend some time serving that cause, and then spend time thinking about the theological implications of the issue. I decided to do my project on the topic of disability, exploring what it looks like to construct a theological framework which honors and empowers people with disabilities.

The organization that I will be working with this summer is the Virginia Institute of Autism (VIA) here in Charlottesville, Virginia. As an intern, I will be learning how to implement a relatively new form of behavioral therapy called applied behavioral analysis therapy (ABA) in VIA’s youngest classroom. VIA’s mission is to “help people overcome the challenges of autism through innovative, evidence-based programs in education, outreach and adult services.” There are several different classrooms according to age group, and instruction occurs either 1:1, 2:1, or in a small group setting according to the needs of each student. Because of the extremely low instructor: student ratio, students receive very individualized instruction and data is taken on every activity and analyzed for progress on various prescribed goals. I will be spending most of my time in the youngest classroom, consisting of eight students between the ages of 5 and 9.

In an attempt to learn how to think theologically about this project, I have been reading about several church fathers’ and modern theologians’ views on disability and its theology. Honestly, I have been surprised at the breadth of work that has been done on “theology of disability” and have come to see that the question of disability is necessarily connected to deeper philosophical and metaphysical commitments. For example, one’s answer to the question of disability largely depends on one’s prior answer to the question “What does it mean to be human?”

Greats of the Christian tradition such as Augustine, Calvin, and Luther all contain some degree of internal tension in the way they discuss disability. Many share the often counter-cultural concern of providing for people with disabilities, both ecclesially and governmentally, as well as a rich understanding of the Imago Dei as present in all humans. However, their stubborn insistence that rationality is what separates man from beast seems de facto to exclude people with certain cognitive disabilities, which would include many of the children I am working with at VIA. Personally, I found Dietrich Bonhoeffer’s response to be the most effective in assessing “the real problem” in discussions of disability. Growing up in a context in which the Imago Dei was effectively smashed to pieces in Nazi Germany, his reflections on what it means to be human are particularly emotionally charged. His response to the question of how a Christian ought to think about disability is particularly paradigm-shifting. Scholar Brand Wannenwetsch offers a synthesis of Bonhoeffer’s opinion as it applies to current debates about the language used to describe disability: “Should we ‘include’ the disabled in the protective zone of the language of ‘personhood,’ a moral attitude which would still be based on a condescending ‘us-them’ rationale, or should we instead summon those who consider themselves not disabled to find themselves included in the same frail and dependent human existence as God’s creatures that the disabled exemplify?” (Wannenwetsch 364).

Maybe it is not simply more inclusive language that is needed in a theological framework of disability, but a shift from the ground up in how we talk about the human condition. Maybe able-bodied humans are not born in a state that is “already closer to the ideal.” As my professor Dr. Paul Jones has said in conversation, “maybe there are ways of entering into the suffering of Christ, and even doing theology, that only people with disabilities can do.” This strikes me as incredibly apt. In a time where experience is being seen as more and more informative for theology, maybe “able-bodied” needs to be understood as a category of privilege right alongside “white,” “male,” and “straight”.

Thinking about theology as more and more experiential has led me to begin to see what this “lived theology” thing is all about. What is theology if it is not lived? Can a theology with no inherent attempt to wrestle with its implications for “real life” truthfully be called “theology” at all? What if God is not primarily defined by his abstract attributes (omnipresence, omnipotence, omniscience), but by his entering into the human condition? What if it is God’s actions that define him more fully than anything else? And what if the moment in which we most clearly perceive God is not when we finally “get” the best analogy to explain the Trinity (good luck with that), but when we look into the eyes of another human being made in his image?

Wannenwetsch,Brand. “’My Strength Is Made Perfect In Weakness’: Bonhoeffer and the War over Disabled Life.” Disability in the Christian Tradition. Ed. Brian Brock and John Swinton. Grand Rapids/Cambridge: William B. Eerdmans Publishing Company, 2012. 353-390. Print.