This Forum features responses to Plough’s Winter 2022 issue, “Made Perfect.” Send your contributions to email@example.com, with your name and town or city. Contributions may be edited for length and clarity, and may be published in any medium.
Facing Our Limitations
On Peter Mommsen’s “Made Perfect”: Isaiah’s imagery of the Messiah as the one from whom we hide our faces has been borne out repeatedly through the Covid-19 pandemic. We are a death-denying, death-defying culture forced to reckon with tremendous loss. Yet staring death in the face is the memento mori that teaches us to number our days aright (Ps. 90:12). Had we faced our limitations sooner, we would be better prepared to prior-itize the collective safety nets we need. Similarly, if we had taken seriously the perspectives, experiences, and expertise of the disability community, we would be in a better place to address our isolation and the current need for medical support and interdependence.
In an eternal sense, Christ is the one from whom people hide their faces. More immediately, modern societies continue to hide their faces from the revelation offered by the disability community. Thanks to Plough for amplifying these accounts.
Subjects, Not Objects
On Maureen Swinger’s “The Teacher Who Never Spoke”: Much of undergraduate academia left me feeling voiceless. I was timid about entering adulthood. My students with disabilities have helped me build an interior life beyond what I thought possible. My experience suggests that a person’s disability can open up emotional byroads that neurotypical people cannot access by themselves.
Whether they have physical disabilities or lack the words to say how they are feeling, my students’ desire to have a relationship with me is heart-transforming. I don’t know how it was for the generations that came before us, but I do know that we millennials are starving for relationship.
On Maureen Swinger’s “The Art of Disability”: Being blind from birth, but spared the consequences of a doctor’s advice to my parents to institutionalize me, I read this piece with particular interest. It’s obvious you are a caring advocate supportive of the spiritual and other benefits of parenting children with disabilities, as well as understanding some of the many social and physical difficulties involved.
I have a longstanding concern with the able-bodied perspective on people with disabilities as objects of care in the first place, that they become defined not by their names or abilities, but by their weakest link. I am sad that such depictions remove their humanity, free will, and agency – the able-bodied become the subjects who speak out on what disabled objects have brought into their lives.
On Ross Douthat’s “Hide and Seek with Providence”: It takes a huge change of heart to move from primarily valuing people for their potential productivity, to valuing each person for their ability to love and be loved. Those of us with chronic illness find ourselves at the center of this existential question.
I have come to learn that I pay a high price for productivity and having fun. A few hours on a good day can leave me unable to focus and move for many days. My younger self could hide it much of the time, but for much of my life an autoimmune disorder has permitted my immune system to attack my body.
In this time of Covid, we hear often of cytokine storms. That’s the description of an exaggerated immune response in which the body believes it is fighting an illness but which ultimately damages the whole. I’m writing this to promote understanding for the millions of people whose bodies, on a daily basis, create and fight these storms.
My disease believes that my joints are alien invaders. The attack is relentless. My body is at constant war with itself.
Those of us with autoimmune disorders don’t necessarily look sick. In the age of Covid I hope everyone learns that there are many of us who always live in the middle of a storm, hoping for it to be tamed.
Douthat wants to know the reason he is afflicted with Lyme disease. … Our faith has long affirmed that God is a mystery, his purposes often inscrutable. We hold that in tension with our belief that God desires to be personally present to us – drawing near whenever and however he chooses. If our faith is to help us bear our suffering, the spiritual challenge isn’t so much to seek out God’s purpose as to trust in God’s presence as best we can, and to redirect our energies from “why” to “how”: How do we carry our burden in a way that honors God?
In Beauty Glorified
On Isaac T. Soon’s “The World Turned Right-Side Up”: At the end of his essay, Soon notes that even in Christ’s own glorified body, his wounds remain – no longer a source of suffering but a sign of victory. This ought to be the starting point for theological reflection upon the significance of both physical and cognitive handicaps. Historically it has been; Nancy Eiesland’s The Disabled God (1994) inaugurated a tradition of seeing the glorified wounds of Christ as evidence of his solidarity with the disabled. Centuries before, both Aquinas and Augustine claimed that Christ’s glorified wounds implied the martyrs would be risen with their own, for, he argued, “we shall see on the bodies of the martyrs the traces of the wounds which they bore for Christ’s name, because they will not be a deformity, but a dignity in them; and a certain kind of beauty will shine in them.”
But martyrs are not the only saints who bear in their bodies the marks of long faithfulness to Christ under duress and oppression. Some suffer far more from forms of societal exclusion and stigma than from anything within their bodies. Theological reflection upon Christ’s “rich wounds yet visible above, in beauty glorified” permits Christians to see dignity rather than deformity in those with both physical and cognitive impairments. It is by now common for disability advocates, activists, and theorists to insist that disabilities ought not be understood as objects for cure. After all, what would it mean to “cure” a person’s Down syndrome without thereby annihilating the person and personality who bears that Down syndrome? Instead, Christian theology insists that their bodies, along with the bodies of the typically abled, await glorification.
But there is yet one further implication of Soon’s insight. If Christ resurrected is wounded and scarred, we have good reason to think everyone will likewise undergo a transformation. … Paul insists that we shall all be changed. God requires no more miracles to resurrect and glorify the body of a person with Down syndrome than are necessary to resurrect and glorify any non-disabled person. Conformity to Christ means conformity to his scars.
Mutuality and Commitment
On Issue 30: Made Perfect: For twenty years, I attended a church where a third of the attendees had various severe challenges. As long as we considered them part of our outreach, we were limited by our condescension from receiving the gifts they offered us. When we began to see them as God-given mentors, they began to realign our priorities: Will you love me? May I love you? Folks dealing with autism, Down syndrome, multiple sclerosis, muscular dystrophy, ALS, and more began leading congregational prayer, joining worship teams, serving communion, reading scripture, performing child dedications, anointing the sick, and commissioning other ministers. Indeed, if Christ is truly reaching out to us, these were his agents, and we were all the richer for it.
My brother and sister were PKU babies who developed severe developmental and cognitive disabilities. Medical authorities told our parents, “Put them away. They won’t live long.” Instead, as their own calling to ministry, our parents kept Rosie and John in our home and later opened our home for the next fifty years to nearly twenty similar children. They were in the vanguard of parents who took up this calling and began supporting each other’s families. My sister Rosie died this past October at age eighty. Having just reached age seventy-five my brother John is already energetically pursuing age seventy-six. Birthdays are important for him! Two pieces of advice: Together with the disabled member of your family, memorize and repeat often Jesus’ words: “Suffer the little children to come unto me; and forbid them not. For of such is the Kingdom of God.” You will find that the kingdom is already present in the supportive persons you meet along the way. And begin now to plan for the future, establishing an irrevocable trust that will support your family member into and during adulthood when you may no longer be there.
In 1985, my husband and I discovered an Ohio state program that removed people with developmental disabilities from institutions and placed them in homes. We investigated and after jumping through many hoops, met Terry. We got on well. He really liked our two-month-old son, Ruben.
Terry had Down syndrome. We didn’t know a lot about it. We just brought him home and made him part of our family and community. He lived with us for seventeen years. We had two more babies, but Ruben was always his favorite. We liked to cross-country ski, so we got him skis and he joined the Special Olympics cross-country team. We liked to travel and camp so Terry got to experience many new places.
Not to paint our lives as perfect: Terry had celiac disease; his speech problems made him hard to understand at times. But it was an incredibly rewarding time. We saw Terry blossom in his skills and abilities. He had a community of people who knew and loved him.
As a result of our time with Terry, two other people in our community opened their homes to people with Down syndrome. And Ruben grew up to get a BA in theater from Kent State. He now teaches acting to adults on the autistic spectrum.
Beyond a Label
On John Swinton’s “A More Christian Approach to Mental Health Challenges”: What a beautiful, rich, and insightful article. I have gone through life with a crazy aunt, a grandmother who is not all there, and a brother who is bipolar. These are the labels that others use to talk about them. As I watch them age and spend time with them, I see that we can still enjoy the beauties of life together. Watching the hummingbirds. Cuddling cats. Doing crossword or jigsaw puzzles. I have been convicted of a widely sweeping judgmentalism of their characters, intellect, even worthiness based on their mental health diagnoses. Swinton’s writing strikes me with its compassion, humility, and genuine respect for individuals, no matter their issues. Keep writing, keep speaking.
I joined the disability club last year when I lost my eyesight, so this issue couldn’t have come at a better time for me. It’s been both illuminating and challenging.
Several of your essays boldly pushed back against the prevailing idea that one must be productive – by which we usually mean something like contributing to the GDP – or one is somehow lesser. While I agree that our penchant for defining ourselves by our market value is terrible, I want to push back a little.
God created humankind out of nothing, set them up in a paradise, then said, “Get to work.” Rather than rejecting the productivity idea altogether, I think we need to rethink what it means, so that everyone’s acts count as contributions, from Peter’s friend Duane to the woman (that’s me) who has to have Siri do all her reading for her. What does that look like? I don’t know. But I do know that it’s infuriating to be told, “Don’t feel like you need to contribute.”