REJECTING CURATIVE TIME: THE BCP, DISABILITY, AND “USEFULNESS”
Photo by Arturo Esparza on Unsplash
In 1991, Ross Laycock died of AIDS-related illness. Later that year, a piece of art created by Ross’ partner, Félix González-Torres, opened in the Art Institute of Chicago. The piece is called Untitled (Portrait of Ross in L.A.), and it looks very different from all the other portraits in the gallery. It consists of a pile of hard candies wrapped in multicolored cellophane. The only parameter for this pile of candies is its starting weight: 175 lbs. This was Ross’ weight before the ravages of AIDS started affecting his body. “Starting” weight is an intentional parameter. Visitors are invited to take a piece of candy with them as they leave. Because of this, the pile slowly shrinks over time — but eventually the museum will replenish the candies, until the pile is again at its starting weight.
This participatory portrait is striking for many reasons. The sweet candies and colorful wrappings are juxtaposed with the subject matter of death during the AIDS epidemic. It invites the general public to both take a piece of Ross with them, yet, in that action, participate in the slow decay of Ross’ reimagined body. Much more can be said — which is true for all great art — but I want to pause on how this piece interrogates the idea of time in the context of illness and disability.
In his essay, “A Brief History of Disabilities,” Topher Endress describes how the reigning models of disability in our culture are the deficiency and medical models. Both of these, especially the medical model, contain certain assumptions about time. “Rather than accept human diversity [...] the medical model combines the conception of disability as a comparative lack with the ethical prescriptions that come from a reliance on science.” The prescription is this: “whatever can be fixed must be fixed.” This mandate drives the wrongheaded search for a “cure for autism,” certain forms of “gene editing,” and “selective abortion.” (1) The assumption about time that the medical model promises is that all disabilities can and should be cured.
Alison Kafer calls this assumption “curative time.” She describes curative time as:
a time frame that casts disabled people (as) out of time, or as obstacles to the arc of progress, but once rehabilitated, normalized, and hopefully cured, we play a starring role: the sign of progress, the proof of development, the triumph over the mind or body. Within this frame of curative time, then, the only appropriate disabled mind/body is one cured or moving towards cure. Cure, in this context, most obviously signals the elimination of impairment but can also mean normalizing treatments that work to assimilate the disabled mind/body as much as possible. The questions animating a curative temporality include: Were you born that way? How much longer do you have to live this way? How long before they invent a cure? How long will a cure take? How soon before you recover? (2)
Curative time is a line from disabled, to cure, to not disabled. Many disabled people don’t see themselves in this story and believe something is wrong with them, instead of something being wrong with the story. Curative time says that disabled people need to change and doesn’t allow stories about society changing instead. Endress discusses alternatives that curative time precludes: “the retrofitting of inaccessible church spaces” and “social activism” for “legislation guaranteeing equal rights.” The disabled and queer communities have in common the experience of society prescribing one way of life, without any alternative. The HIV/AIDS crisis highlights this intersection between the queer and disabled communities. The pattern of birth, marriage, employment, reproduction, and death was challenged. The queer community was forced to focus on the here and now and to make the most of each day. It is in this context that González-Torres’ work disrupts curative time. Instead, it offers a cycle that keeps Ross alive, reborn, in the midst of illness. Many disabled people, like people with muscular dystrophy, multiple sclerosis, or chronic illnesses have a similar relationship to being thrown out of curative time and all of those other assumptions about how a life should unfold.
I want to make it clear that curative time has nothing to do with any one person’s relationship with time or medicine. Kafer says she is concerned “with compulsory able-bodiedness/able-mindedness, not with individual sick and disabled people’s relationships to particular medical interventions; a desire for a cure is not necessarily an […] anti-disability rights and justice position.” (3) Pain and suffering, oftentimes apart from ableist structures, are realities in many people's, especially sick and disabled people’s, lives. An end to pain and suffering remains a part of the Christian hope and isn’t necessarily implicated in a critique of curative time. Similarly, I’m not concerned with any one Episcopalian’s use of these prayers in their devotional lives. Since Anglicans believe that our praying shapes our believing, then the assumptions the prayer book makes about disability become how we as the people of God interact with disability.
Turning to the prayer book, what models of disability and assumptions about time do we see? Ian Lasch’s recent Earth & Altar article shows how Eucharistic Prayer C excludes “people with dementia, mental illness, or disability” from its vision of the imago Dei. (4) What about elsewhere in the prayerbook?
Under the “Prayers for the Sick” on page 459, an alternative prayer “Before an Operation” is offered:
Strengthen your servant N., O God, to do what he has to do and bear what he has to bear; that, accepting your healing gifts through the skill of surgeons and nurses, he may be restored to usefulness in your world with a thankful heart; through Jesus Christ our Lord. Amen. (5)
Within this prayer, the phase “restored to usefulness” betrays several assumptions about disability. While sickness and disability aren’t identical categories, there is much overlap. What does it mean that sick or disabled people need to be “restored” via surgery? This phrase clearly speaks in the register of curative time. It takes a linear view of surgery: there is a deficiency that has to be restored, repaired, returned to its unimpaired condition. It doesn’t contemplate the surgeries that many disabled people undergo, not to be “cured” but to simply live. It assumes the elimination of an impairment. It assimilates the disabled body into a “normal” body. This isn’t an isolated term, as five of the first seven Prayers for the Sick use the term “restored” to describe the trajectory of a sick person.
Moreover, if disabled people don’t evidence “usefulness” in their current condition, what does that imply? Clearly any implication that disabled people are useless must be rejected. The belief that disabled people lack “usefulness” is a hallmark of the deficiency and medical models’ dominant economic assumptions. In this model, a person’s usefulness is primarily measured by their economic productivity, which is reduced by impairment. Of course, disabled people are friends, family members, spiritual advisors, and more. In any event, reducing disabled people to their economic usefulness and productivity in our capitalist context is antithetical to respecting the dignity of all people. In González-Torres’ work, campy, colorful candies representing Ross undermine any evaluation of him based on productivity. We should decouple disability and economic “uselessness,” so disabled people’s livelihoods and dignity are not a function of their economic productivity.
Disability theologian Nancy Eiesland identifies several “theological obstacles” that preclude disabled people from full inclusion in the church. One of them is the “ideal of virtuous suffering.” Eiesland describes how the Biblical stories of Paul’s “thorn in the flesh,” Job, and Lazarus have historically been interpreted to mean:
physical impairments were a sign of divine election by which the righteous were purified and perfected through painful trials. They represent disability as a temporary affliction that must be endured to gain heavenly rewards. […] virtuous suffering has a subtle, but particularly dangerous theology for persons with disabilities. Used to promote adjustment to unjust social situations and to sanction acceptance of isolation among persons with disabilities, it has encouraged our passivity and resignation […] Viewing suffering as a means of purification and it gaining spiritual merit not only promotes the link between sin and disability but also implies that those who never experience a “cure” continue to harbor sin in their lives. (6)
The ideal of virtuous suffering assumes curative time, that disability will be temporary and a cure is synonymous with triumph over the sinful body.
Let’s return to the Prayers for the Sick, where a Prayer for the Sanctification of Illness is also offered:
Sanctify, O Lord, the sickness of your servant N., that the sense of his weakness may add strength to his faith and seriousness to his repentance; and grant that he may live with you in everlasting life; through Jesus Christ our Lord. Amen. (7)
This prayer risks framing disability not according to the Christian belief that all bear the image of God, but according to the assumptions of curative time and the deficiency/medical models of disability. Just as Eiesland predicted, the sanctification of suffering promotes the link between illness (again, overlapping with disability) and sin. The movement out of physical weakness is paralleled by a movement towards “strength” of faith and repentance from sin. Physical deficiency implies a spiritual deficiency, and a linear, lockstep path out of each.
Untitled (Portrait of Ross in L.A.) shatters the link between sin and disability. Ross isn’t portrayed as a man whose illness is a result of his sin, as many religious people in the 1990s (and today) portray victims of the HIV/AIDS epidemic. He’s remembered in the sweetness and bright colors of his portrait. What are the candies carried in the pockets of countless visitors and the perennial refilling of the exhibit if not images of everlasting life and resurrections in the midst of illness itself?
Endress, Topher. “A Brief History of Disabilities: A Platform for Modern Theological Engagement, Part 1,” January 4, 2021. https://earthandaltarmag.com/posts/xtz56q1itj1z41r1gfjv1ribb9swk0
Kafer, Alison (2013). Feminist, Queer, Crip. (Bloomington, Indiana: Indiana University Press), 27.
Ibid, 28.
Lasch, Ian. “More than Memory, Reason, and Skill: Prayer C and the Image of God,” June 21, 2021. https://earthandaltarmag.com/posts/66wzts4kigeizuw2f8s74j3r0myqly
The Book of Common Prayer (New York: Seabury Press, 1979), 459.
Eiesland, Nancy (1994). The Disabled God: Toward a Liberatory Theology of Disability. (Nashville, Tennessee: Abingdon Press), 72-74.
The Book of Common Prayer (New York: Seabury Press, 1979), 460.
