Disabilities

Review: A Quiet Life

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A Quiet Life, Kenzaburo Oe (Translators: Kunioki Yanagishita, William Wetherall). New York: Grove Press, 1998.

Summary: Ma-chan, a quiet, college age woman is left to care for her older brother who has a neurological disorder and younger, college-bound brother while her father, a famous writer, sorts out his life and faith in California on a writer’s residency.

All Ma-Chan wants is to live a quiet life, writing her thesis on Celine, a French novelist, while caring for her brother, nicknamed Eeyore, who suffers from epileptic fits that have caused brain damage, yet left him with an unusual musical talent. She has been more or less marginalized, an orphan even before her parents left Japan for California. Her parents tended to focus on the afflictions of the older brother and the promise of the younger brother, O-Chan, preparing for his college entrance exams while his parents are in America, Her father, a famous writer, has left for a writer’s residency in California. In reality, he is suffering from a “pinch” of the spirit, having suffered a loss of faith that causes him to wonder “how is a faithless person to cope with life?”

Ma-Chan is left to cope at a more practical level. She has to help her older brother deal with his sexual urges in socially appropriate ways while seeing that he gets to his sheltered workshop each day. She has to help others understand her brother’s seizures and resist their mockery of him, often in internal cries of “Hell no! Hell no!” She also takes him to the Shigetos, who help Eeyore discover and develop his unique gift for musical composition. One of these is titled “Sutego” or orphan. Both brother and sister are orphans together.

Eventually, it is recommended that Eeyore take swim lessons to channel some of his physical energies. It is here that they meet Mr. Arai, a shady character who agrees to teach Eeyore to swim. And he is very good at it and a bond develops between them, even as everything in us screams “predator!” Mr Shigeto starts watching out for them until a confrontation with Arai in which Mr. Shigeto is severely beaten, opening the way for Mr. Arai to pursue his designs.

The “quiet life” Ma-Chan wants comes at the cost of submerging her own selfhood. She describes herself as “robotizing.” She sees herself as a skinny thing with stick legs, oblivious of her own sexuality and that others might notice her. Yet there are her “Hell Nos” and her “Diary of Life,” written that “her papa might remember he has a family.” One comes to the end of this novel wondering whether Ma-Chan will find her voice and her self in more than a diary and her internal monologue. Will she heed the self that says “Hell No!” or let her father treat her as an orphan while he pursues an esoteric spiritual search? Will she emerge as the scholar in her own right?

Many of us want a quiet life. Life doesn’t always permit this, and more than that, at what price do we secure such a life? Is it at the price of our selves? Must we robotize? It seems these are the questions Oe’s novel asks of us. Meanwhile, he seems to take a swipe at the pretensions of literary figures who think their existential “pinches” more important than the real pinches they make those around them endure.

Review: Disability and the Church

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Disability and the Church, Lamar Hardwick, foreword by Bill Gaventa. Downers Grove: IVP Praxis, 2021.

Summary: An eloquent and theologically grounded plea affirming the value of persons with disabilities and the steps churches can take to welcome and fully include them.

It was heart-breaking. Friends with a son who has a developmental disability were asked by an usher to leave a service due to the fact that their son’s vocalizations were distracting to others. Their son was fully aware he was the reason they were asked to leave. A well-stated letter to the church’s vestry (and social media posting) led to further meetings and a welcome to return.

Many of our churches post signs that say “all are welcome” and make efforts to welcome those of various ages, economic status, ethnicity, and gender and sexual orientation to our congregations. Yet both physical barriers and barriers of perception, understanding and values make it difficult for persons with disabilities to find welcome and be accepted as valued parts of our church communities. The U.S. Center for Disease Control states that 61 million adults (or one in four) in the U.S., a number that rises to two in five over the age of 65.

Lamar Hardwick is a Black pastor with a passion for reaching this huge population. A significant part of this is fed by his growing understanding of his own autistic spectrum diagnosis at age 36. He describes both the wonderful ways his congregation made accommodations informed by his diagnosis as well as some of the responses that sought to persuade him not to talk about his diagnosis. Thankfully, he and his congregation have learned to live with his disability in ways that allow his gifts to flourish. This book both narrates some of that journey and discusses a theology of persons with disabilities that affirm their unique gifts and abilities and capacity to contribute in our communities.

He grounds this appeal in the reconciling work of Christ, our unity and individuality in Christ, and his peace in our communities. He believes that the church is made for inclusion, including inclusion of those with disabilities. He then begins to address specifics of inclusion by contending that we have not designed our churches for inclusion of persons with disabilities. We need to think about what it means to set a table that is welcoming in terms of staff, background checks, training, equipment, curriculum, family support, special events, and outreach and marketing.

As we work with the disabled Hardwick draws on his own experience to discuss better questions: not, “why did this happen?” but “how may God be seen?” He deals with efforts to “heal” those with disabilities which may reflect our own discomfort with suffering when we might better walk alongside a person as God forms them through their disability. Hardwick explores the barriers of body image in our culture and how we respond to those who fall outside “ableist” norms. He raises the intriguing question of whether the risen Lord, bearing the wounds of the cross, would also bear their disabilities in the use of his hands, and his abilities to walk. We have to consider whether our actions help or hurt and we cannot do this apart from those with disabilities being part of the conversation.

Then drawing a parallel with the parable of the soils and the three soils that do not bear fruit, he addresses three kinds of barriers that hinder our churches from bearing fruit in including those with disabilities. There is the barrier of lack of understanding that may be met with education. Second is the barrier of life’s problems that prevent those with special needs from making deep and meaningful connections addressed through patient and persistent care and appropriate support structures. The third is the barrier of thorns, by which Hardwick means the policies, processes, and programs that hinder the fruitful engagement of those with various disabilities. He believes this is addressed by developing a diverse leadership culture that includes those with disabilities and affirms their leadership.

Above all, he commends the development of an affirmative culture focused on what all those with disabilities are able to do in all areas of church life. What makes this book so compelling is that throughout, Hardwick is not simply advocating for those with disabilities, but with them, speaking out of his own experience, and offering a vision of what could be as the church awakens to this significant “people group” who we often fail to include well.

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Disclosure of Material Connection: I received a complimentary review copy of this book from the publisher in exchange for an honest review. The opinions I have expressed are my own.