Crippled Grace

Disability, Virtue Ethics, and the Good Life

Shane Clifton

• Publisher: Baylor University Press
• Year: 2018
• ISBN:
  9781481307482
• Topic: Social Sciences
• Subtopic: Disabilities in Sociology
• Index: Social Sciences

Crippled Grace combines disability studies, Christian theology, philosophy, and psychology to explore what constitutes happiness and how it is achieved.The virtue tradition construes happiness aswhole-of-life flourishing earned by practiced habits of virtue. Drawing upon this particular understanding of happiness, Clifton contends that the experience of disability offers significant insight into the practice of virtue, and thereby the good life. With its origins in the author's experience of adjusting to the challenges of quadriplegia, Crippled Grace considers the diverse experiences of people with a disability as a lens through which to understand happiness and its attainment.Drawing upon the virtue tradition as much as contesting it, Clifton explores the virtues that help to negotiate dependency, resist paternalism, and maximize personal agency. Through his engagement with sources from Aristotle to modern positive psychology, Clifton is able to probe fundamental questions of pain and suffering, reflect on the value of friendship, seek creative ways of conceiving of sexual flourishing, and outline the particular virtues needed to live with unique bodies and brains in a society poorly fitted to their diverse functioning. Crippled Grace is about and for people with disabilities. Yet, Clifton also understands disability as symbolic of the human condition—human fragility, vulnerability, and embodied limits.First unmasking disability as a bodily and sociocultural construct, Clifton moves on to construct a deeper and more expansive account of flourishing that learns from those with disability, rather than excluding them. In so doing, Clifton shows that the experience of disability has something profound to say about all bodies, about the fragility and happiness of all humans, and about the deeper truths offered us by the theological virtues of faith, hope, and love.

1

The Experience of Disability

The Journey We Would Not Have Chosen

This book had its impetus in my personal experience of quadriplegia, but my understanding of the struggles and joys of living with disability has been framed through interaction with others. Of special importance has been an ongoing conversation with Jay McNeill, a friend and father of twin girls, one with a severe disability. His reflections on his family’s hardships and joys—set out in his blog and in personal correspondence—have been in the forefront of my mind as I developed my argument.1 For that reason, I have decided to give my readers the opportunity to hear directly from him, as well as his wife Helena. As you will discover, they raise many of the issues that will occupy us for the remainder of the book, and their placement here is as a reminder that the inevitable abstractions of philosophy and theology are meaningful only when grounded in real-life experiences.

Jay will say that he is not a theologian, but although he has had no formal training, he has the spirit of a philosopher. He is willing to ask the hard questions of faith, and follow the answers wherever they take him. Jay is a musician, and where I can be dry and logical, he is colorful and open-ended, and I suspect the contrast will prove to be stimulating.

Jay

It was a disturbing way to start a family; a mad rush of speed through several red lights, two Aussie soon-to-be-parents in a foreign country, headed into the wilderness with no compass. Naivety was my friend until it abandoned me in a tidal wave of reality. Our twin girls, Sunshine and Jazmine, were three months premature and born awfully sick. Sunshine was on a ventilator for four months and lived the first six months of her life in the Neonatal Intensive Care Unit (NICU). Even after bringing her home, we faced emergency dashes to the hospital on more occasions than I care to remember. Eleven years later, Sunshine is stable but has been profoundly affected and has severe cerebral palsy, along with all its complications. She needs assistance for most things and is not able to talk, eat, hold her head or walk. Jazmine was in the NICU for two months and has since joined the clan of the “average”; today you wouldn’t even know she was a preterm.

The instant transition we found ourselves in came with a twist I wouldn’t fully understand until later—we were worship pastors at a megachurch in Chicago USA. The assumption would be that my vocation would somehow be advantageous if I were to find myself in a crisis—instead, it made it more complicated. The very essence of our job was to bring focus and contemplation to a congregation, just at the time when our lives were turned upside down. Most days I wanted to quit, but my survival instinct would have me consider practical things as paramount. I needed a job, and I was in a foreign country with a specific visa for a specific role. Plus, my pride would have me be strong and push through like all good leaders should. Even today when I reflect on that period, I can feel the heaviness and contradiction lingering in the background of my mind.

After leading thousands of people in an intimate, upward focus in the worship of God on a Sunday, I would leave the church building and drive to the hospital, wondering if God even cared about what was going on in my world. I felt like a fraud. I remember one evening, in the very early days, I stood in front of the NICU pod where Sunshine was lying encased in a plastic shroud. She weighed a little over one kilogram, and her translucent skin emitted a sickly red color. She was arching her back in a pulse-like rhythm from severe pain, yet I couldn’t hear her whimpers. She was suffering, alone, without the comfort of a human touch because she was too sick to hold. I have never experienced a more confronting picture of vulnerability. I pleaded with the nurse to do something; she tried to comfort me with a reminder that they were doing all they could. But doing all they could wasn’t easing Sunshine’s pain. While I looked at Sunshine through the plastic shroud, I became deeply disturbed and fractured, and something inside me shifted. In my mind, injustice had a new poster child, a new thumbnail portrait that would permeate all of my future thinking. Sunshine was innocent and had done nothing wrong. In that moment, I wondered if the Christian view of God to which I had subscribed—God as an accessible healer and intimate friend—may have been bogus.

No prayer or petition would change Sunshine’s situation. My only option was to clench my teeth and fight through it. Sunshine would be among the many in this world who has had to suffer without the soothing balm of purpose. She would be in the elite group of people, like Holocaust survivors or displaced indigenous groups, that would not escape the brutality of our world. No future commentary would ever soften the pain or change the experience; nor would I likely heal from the emotional turmoil of watching the trauma unfold. I realized that, like many who have gone before me in this world, a full recovery from a brutal experience was a naive presumption. Nothing would ever remove what felt like scars of war, and to think otherwise would be to disrespect or diminish Sunshine’s suffering.

Some time later, when Sunshine was around one year old, a case manager asked about our goals for her physiotherapy. I felt agitated because I thought the answer would be obvious to everyone. I wanted Sunshine to walk. In the early days, my heritage of Pentecostal faith, mixed in with the fact that I had no real understanding of the nature of cerebral palsy, made it far easier to believe something magical could happen. More than a decade later I have been sobered, and my ultimate dream is not a YouTube recording of Sunshine’s first steps, but a simple conversation with her—just the two of us. Depending on the development of technology and Sunshine’s unknown potential, it could actually happen—with or without faith.

My faith journey has become entwined with Sunshine’s journey. They are linked, which demonstrates to me that my faith is, in fact, not broken but alive and responsive. At every stage of Sunshine’s horrific health challenges (and there have been many over the years), I have been forced to reconcile my beliefs. Over and over again, I’ve had to allow my thinking to be tested, and each time I’ve had to surrender to something bigger than me. During the early years, I remember my faith slowly disintegrating, but I chose to ignore the transition long enough for the culture of Christianity to function autonomously, not connected to anything of substance. That was when I realized that faith can be faithless. Blind or habitual faith without substance still has a centering quality because it brings a focus and a sense of belonging, which is why the church could continue with or without God, and many wouldn’t notice.

Sunshine’s journey tipped my already fragile faith into a crisis, and I realized that I had a significant problem on my hands. The lens through which I judged the quality of my relationship with God had been polished by the fine granules of uncertainty and now I could see infinitely clearer. I would no longer be able to separate the stark contrast and contradiction of Sunshine’s health from who I thought God was. The next chapter of my spiritual walk was possibly the most upsetting and disruptive experience I have had—the word that comes to mind is “loneliness.” Once I started evaluating all the things I thought were true about my faith by the light of the brutal reality of my daily life with Sunshine, the intricate and self-serving theology that I had created turned out to be redundant. I realized that I had built my life on sand, and I no longer sensed God as a close friend—it was shattering. No words from seasoned ministers or close friends managed to change my mind at the time, because Sunshine presented as “exhibit A” of why God’s healing, purposefulness, and accessibility weren’t true. Few were prepared to present an alternate view with any sort of conviction, partly because the very problems presented challenged the faith of many who came in contact with our family. People knew that absorbing our reality was a precarious choice and could risk shaking their own foundations of faith.

I began to think about things that I never thought possible. There are serious ethical questions about disability and faith that rarely get questioned, which is a shame, because disability provokes the kinds of questions that I suspect are a gateway to a stronger faith. Disability in a child is a line in the sand for me. It says one of two things: either God has allowed innocence to be corrupted, or that God is not in complete control. But what if the idea that God is not in control of the finer details of this troubled world meant that our faith could have substance? What if uncertainty and mystery took a front seat in the car; and certainty was banished from the driver’s seat? Would the possibility of a quality faith in God be worth the risk?

When Sunshine struggles to breathe during a typical winter cycle, there isn’t a voice in me that says, “There is a reason for suffering, God must be teaching me something.” I have come to the conclusion that there is no spiritual purpose for pain or suffering. In my mind a God who teaches someone else a lesson at the expense of an innocent child is not the kind of God who is working towards a perfect and flawless heaven—pain and suffering are a selective and mechanical concept that fits far better in a Darwinist theory. The miracle that I think doesn’t get talked about enough is how, in many cases, God can turn that pain and suffering into something good. That is the miracle—it doesn’t have the lustre of a lame person walking, but it surely serves a greater purpose, if an individual finds peace.

The trauma Sunshine experienced in the NICU left her with profound hearing loss. As a musician you would think that discovery would have been a huge disappointment. Surprisingly, I didn’t react on hearing the news. Maybe it was because at that point we had had so much bad news that it all just blended into one big chorus. The option we chose was the modern miracle of cochlear implant technology. It would be one forward step in our journey that would be remembered as a breath of hope. The day we arrived to have her implant turned on was full of anticipation, as Sunshine had been living in silence for eighteen months. What would she do? Would she cry, laugh, or not respond at all? We were told to prepare for all of it. We didn’t have a way to communicate with Sunshine what was about to happen, so she would just have to manage the surprise of an instant sensory experience. The audiologist counted down and flicked the switch. It was a genuine miracle; Sunshine heard our voices for the first time. Yes, there were a few tears, and in a long line of disappointments, those tears of joy were very welcome. I have often contemplated the practicality of that moment and how devoid of mystery it was—we took the act of a miracle into our own hands. It was a transaction. We handed over money (along with the right insurance), and we got the outcome we had planned for. It wasn’t that different to how I used to see God—pray, commit, and give money in exchange for a relationship with a creator who offered spiritual insurance against life’s challenges.

[Note: cochlear implants are controversial within the Deaf community.2 However, since Sunshine is unable to use her hands or communicate in any way, the cochlear implant means that she is no longer completely isolated from the world around her.]

The most difficult thing for me to process was not the physical impairment Sunshine would live with, but the ethical dilemma disability presented when it came to the relationship between cognitive ability and the eternal consequence of establishing a core belief. So much of our Christian thinking revolves around a pivotal decision at a certain moment in time and then a series of moral choices after that. Initiating a Christian pilgrimage relies on understanding a set of complex ideas such as atonement. If you have ever sought the opinion of several people of equal intellect on any given subject on faith, you will soon realize that there are subtle nuances and differences that make a conclusive and holistic agreement unlikely. A deductive mind becomes important if an individual wishes to form a perspective that fits into an acceptable Christian framework. So what, then, if my daughter Sunshine is not able to comprehend the life of Jesus or even the concept of a God? If faith genuinely relies on some level of intellect or reasoning, then the most vulnerable in our community are at a disadvantage. It makes Jesus’ call to have faith like a child a far more provocative idea. So how important is a conclusive view on Christianity then? The more people argue about an intricate theology that promises to unlock a new profound understanding, the more removed I feel from Christianity because it excludes my daughter. For my daughter, deductive thinking or perception is more an obstacle than a pathway to faith. The sense of injustice nestled in under my skin causes me to push back against the idea that intelligence plays a role in any way at all when it comes to faith. It seems unlikely that God would endorse inequality by elevating thinking as a primary way to His heart when there are so many variables to human beings. It is important to note that I am reflecting on the journey of faith from my own perspective, and not from Sunshine’s point of view. At the moment, Sunshine can’t speak for herself. And until she can, I won’t dare to presume what it is she might think and say.

At the end of all the speculation and hypothesis, the truth is I would lay my life down for Sunshine. That is because I think her life is more valuable than mine. The world will continue to value productivity over love, because that is how efficient economies operate. Sunshine is not economically productive. In fact, she requires an enormous amount of resources to get through each day. But on my death bed, I won’t be mindful of my financial footprint, I will be mindful of how much love I have given and received from others. In the case of Sunshine, there will not be one moment that I will regret where I have denied a preference of mine to fulfill a task that Sunshine needed from me. I know, without a doubt, that every diaper, every late night or broken sleep, every surgery, every opportunity turned down, every financial nicety denied, and every spiritual wrestle will be worth it.

I have paid a price to be Sunshine’s father. It would be pretentious of me not to acknowledge that I do lament the challenges, but I have earned a privilege that you can’t buy. Sunshine trusts me; she knows that I will be there and because of that she gives me a life-changing love in return that is far more sophisticated than words. Her love and presence keep pushing me to believe in God and have the courage to continue denying the magic, alluring promises that some parts of the modern Christian movement offer. I am a better man because of this journey, but I’ll admit I live in more uncertainty than I am comfortable with. My lessening expectations of resolve and welcoming of uncertainty have become bitter medicines that I know I need.

At night, when I put Sunshine to bed, her precious face beams satisfaction, and I wonder if inside that broken body of hers is a more content human being than the average. Sunshine’s life brings love from its lofty heights of the unobtainable to the tactile and useful interaction of an assuring smile. If disability can ground humanity and inform acts of compassion, then we should embrace and normalize its presence, rather than see disability as a problem to fix.

Disability is more painful than it ought to be because we have elevated perfection as a primary indicator to success. I struggled with Sunshine’s disability for several reasons; the first and most powerful reason was that of the injustice of cerebral palsy. But the other powerful driver was unrealistic expectations, where I believed that life was not meant to be difficult—difficulty was just a phase that I would eventually overcome, by willpower and spiritual assistance.

Delayed gratification has helped me embrace discipline and achieve many goals in this life, but in the context of dealing with real challenges, it has been a blunt tool that, at times, has me to deny reality. The brain gets a chemical kickback from denial when there is an expectation of success at the end. The longer we delay our gratification, the more powerful is our elation when we reach our goal. That is why we exercise, study, save money or more provocatively, resonate with the idea of heaven. In the early days, I used delayed gratification as I processed Sunshine’s illness, expecting it would all work out if I kept pushing through, and did not waver in my beliefs. But eleven years later my brain hasn’t been rewarded with the chemical kickback it was expecting. Now I understand, and I have learned something far more important. My intimacy with God can only happen if my faith embraces uncertainty. Uncertainty is useful in the context of faith, and peace is an indicator that uncertainty is positioned correctly in the psyche. Uncertainty has become oxygen for my faith and makes sure that all my senses are working properly, and are not dulled from listening to philosophy or ideas that attempt to put a full stop at the end of every sentence.

I don’t thank God for Sunshine’s illness and the lessons that I have learned. It would be macabre to think that way. ...