Book Review

Brilliant Imperfection: Grappling with Cure

Eli Clare. Duke University Press Books, 2017. 241 pages. $20.65 (paperback).

Submitted by Sue Mann Dolce, AHEAD Disability Studies SIG co-chair

Disability Studies. Disability Activism. Queer Studies. These are the categories listed in Brilliant Imperfection: Grappling with Cure by Eli Clare. The Unitarian Universalist Church of Buffalo’s Access and Inclusion Ministry (UAIM), with support from LGBTQA community groups, and the University at Buffalo’s Center for Disability Studies, Accessibility Resources and Wellness Education Services, sponsored Eli Clare’s two-day visit to Buffalo, New York in spring 2017. Eli’s visit included a dinner/discussion with graduate students from the UB Center for Disability Studies and other guests, a pulpit talk and reading at the Unitarian Universalist Church, a community reading and discussion, and strategic planning for activism.

Brilliant Imperfection is a dense, rich, provocative book that engages the reader personally, politically, and practically. Initially assuming it to be a “quick read” I found myself contemplating it chapter by chapter, sometimes having to put it down after a couple of lines, or a couple of pages. Divided into 10 chapters, each organized around a theme associated with “cure,” what follows are my impressions chapter by chapter followed by a discussion question.

Reading suggestion: Each chapter ends with a “Brilliant Imperfection,” a short poetry/prose reflection that in some way embodies the chapter.  Reading the “Brilliant Imperfections” on their own either before or after reading the book, or reading them aloud in a discussion group is worth exploring.

Chapter 1: Ideology of Cure

Beginning with his story of being alive due to medical technology this chapter is quickly immersed in cure, defect, retard antics, history of disability beliefs, tragedy, pity, doctors, medical model, overcoming as collective social action; cure’s back-up plan. Cure and hope, hope through the disabled body mind, through community, a desire for social justice, and finally ending with walking in a restored meadow.

Chapter 1 discussion question: If ideology is a comprehensive set of normative beliefs, conscious and unconscious ideas that an individual, group or society has, what are our personal beliefs about cure?

Chapter 2: Violence of Cure

The premise of this chapter is that defectiveness justifies cure and makes it essential. There is a discussion showing the relationship between power and privilege and declaring groups as defective. The dance of defectiveness and ableism is explored, including how it shapes our understanding of what is normal and abnormal. It is stated that eradication is at the core of cure, and cure always operates in relationship to violence. This chapter closes with the supposition that personhood is a birthright for some and a constant fight for others.

Chapter 2 discussion question: How do you think about defectiveness? The dance of defectiveness and ableism?

Chapter 3: In Tandem with Cure

This chapter discusses how diagnosis, disorder, rehabilitation, and adaptation is about more than treatment. Eugenics, sterilization, castrations, vasectomies, tubal ligations (2,648 until Oregon law repealed in 1983). Diagnosis holds knowledge and control, changing three dimensional human beings into two-dimensional data: diagnosis as tool not as fact. This is essential reading for all service providers, health professionals, teachers, psychologists etc.

Chapter 3 discussion question: What does diagnosis mean to you? How does it impact you and the people in your life?

Chapter 4: Nuances of Cure

An exploration of the tension between resistance to bodies as broken and manifestations of pain: facial distortions, intersectional ties of shame, natural, normal, environmental degradation, and bearing witness. A case is made for holding space for contradictory thoughts about chronic illness, health and disability, and the need for and rejection of cure: the mixed bag of human experience.

Chapter 4 discussion question: How do you think about the intersections discussed in this chapter? Do some of the intersectional themes or ideas resonate stronger for you than others? Why?

Chapter 5: Structure of Cure

Cure as ideology is rooted in the medical industrial complex (MIC), an intricate jumble that is the reigning authority over our body-minds. There is an analysis of how economic interests are related to scientific frameworks as well as the interplay between public and private institutions, governmental regulations and cultural understandings. How the MIC is sustained and who profits is discussed, a far-reaching network that aims to eliminate “the trouble” (from the individual to the world). Although cure is focused on eradication it adapts through diagnosis, treatment, management, rehabilitation, and prevention. Examples include Harriet McBryde Johnson (p. 72), muscular dystrophy versus Chronic Fatigue and Gulf War and how Eli Lilly profits off of HGH medications.

Chapter 5 discussion question: How does the MIC affect you? Your life?

Chapter 6: How the Cure Works

“It took me weeks to discover the gap between my desire for less pain and the doctor’s desire for cure.” This chapter focuses on the promises of cure and arbitrary cultural values including prioritizing walking over rolling, devaluing disability and disabled people, and the fear of death. There is an exploration of the struggle between a possible future cure and preventing diseases and the material and attitudinal support people need now.

Chapter 6 discussion question: How does the struggle between cure and current needs play out in your personal, professional, or community life?

Chapter 7: At the Center of Cure

This Chapter begins with three odes to Carrie Buck and other “defectives.” Emma Buck and her daughter Carrie were locked away in the State Colony for Epileptics. The Buck vs. Bell U.S. Supreme Court case in 1927 in which Oliver Wendell Holmes wrote the opinion that declared compulsory sterilization laws constitutional, and which allowed the state to sterilize Carrie Buck and thousands of others for the ‘PROTECTION AND HEALTH OF THE STATE,” based on eugenic principles of defectiveness and feeblemindedness. The Torrent of History section includes information about and the Central State Lunatic Asylum for Colored Insane and the 1924 Virginia State Racial Integrity Law outlawing mixed race marriages and resulting in sterilization and violence toward many. The final sections include information about case files generated by the MIC, Freak Shows and a personal story of terror and escape from schizophrenia.

Chapter 7 discussion question: How is the concept of being defective currently being used in the United States to exert power and privilege? What historical stories do you have about people being institutionalized and or sterilized?

Chapter 8: Moving Through Cure

An in-depth discussion of “un-choosing” and choosing disability. Un-choosing might include drunk driving ads showing young makes in wheelchairs implying that using a wheelchair is worse than death, genetic testing and aborting fetuses that might have fetal abnormalities, sperm bank screening, runs to end diabetes, bike rides to end MS, and dumping ice to end ALS. Un-choosing is celebrated and seen as positive for all. Choosing might include choosing to adopt a child with disabilities, deciding against genetic testing, seeking out deaf sperm donors, and choosing to disable self. Choosing is considered pathological, shamed, or sensationalized.

Choosing and un-choosing are laced with contradictions. Trying to create a “mono culture” does damage through the violence needed to eradicate and remove the people who are damaged or defective. This leads to a discussion of over 30 million bison being killed in the 1800s leading to the genocide of indigenous peoples, and this is then linked to the previous discussion of compulsory sterilization.

The DSM is presented as, “… a constructed projection placed on top of a particular body mind experience to label, organize and make meaning of them through a specific world view.”

Interdependence and the interdependent relationships between disabled people and their care providers are messy and marked by power imbalances.

Chapter 8 discussion question: What did you or people you know claim and hide? (p. 145)

Chapter 9: Impacts of Cure

Turning the tables on the endless questions based on the logic of privilege: What caused your heterosexuality? How do you know you are a cisgendered man? Why are you healthy all the time? Can I touch your straight blond hair? And so on. This chapter discusses an exploration about Ashley’s father and the choices he makes to sterilize her and have her stay a girl, asserting it is done from a place of love. Intelligence is often used to determine worthiness, value, and personhood. Intelligence and verbal communication as entrenched markers of personhood. Feeling broken, claiming brokenness: “…the ideology of cure would have us believe that whole and broken are opposites and the latter has no value.”

Shame and pride: In one way or another most of us have experience with shame, “…I know that shame has become home for many of us… the work of making our body mind home is worth it” (p. 166).

Chapter 9 discussion question: What is your body mind relationship to shame?

Chapter 10: Promise of Cure

Normal and natural: the MIC pushes normal weight, walking, thinking, feeling, and communicating; sometimes confusing normal with natural. This leads to a discussion of capitalism and the devaluing of the natural world. Normal as averages posed as the best states of body/mind only exist in contrast to threat of unnatural and abnormal. No single story holds the entire truth of wholeness. MIC and trans people, surgery taping into our desires, promising so much, varying relationships to cure.

Grappling with cure leads to a maze of contradictions. Making profit/extending life, ending pain and suffering justifies research, and the MIC keeps many of us alive. Glimpses of a world where many kinds of body mind differences are valued, and no one is eradicated. Cure promises so much but it will never give us justice. A brief discussion of Clare’s mother and the final sentence of the book, “Could it all be this complexly woven and yet simple?” (p.187).

Chapter 10 discussion question: What are your experiences with normal and natural, the promise and contradictions of cure?