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.