Discussing Amy Kenny, part 2

The second discussion session of Amy Kenny's My Body is Not a Prayer Request tied up some loose ends from before and then turned to the medical and social models of disability and their implications. 

We started with some addenda to  the previous discussion. 

• Another factor for acknowledging justice concerns is not only opposition to the ADA from religious organizations, but later to laws such as the Affordable Care Act, particularly those dealing with pre-existing conditions, coverage of mental health, and universal coverage.
• The “crip tax” (63): costs of disability that aren’t covered by insurance. Examples include the Indiana vehicle excise tax: an adapted van can cost $60,000, and if bought as a finished unit, which is often necessary, the tax is charged on the full price, instead of an unmodified van.
• Compounding historic opposition to the ADA and similar measures, churches have a troubled past. Eugenics was once popular among churches as well as elsewhere, and resulted in so-called ugly laws, involuntary sterilization, and unnecessary institutionalization. Thinking of Kendi's book, racial laws often specified that a small amount of Black ancestry resulted in a legal description of being racially Black despite appearances, similar to determinations of Jewish ancestry of the Nuremberg Racial Laws. People with disabilities were the first to be killed in that period as well (Aktion T4)
• ADA accommodations are enforced by civil lawsuit. They have been used as a scapegoat, e.g. Georgia voting locations that made voting difficult for minorities were "needed" because of a lack of ADA-compliant accessibility. 
• Transportation is often a problem: ride-share drivers often zip by or refuse people with service dogs or assistive devices. A local residential facility doesn’t operate its transportation van on weekends, relying on ride-share, which can be uncertain. 
• Restaurants seat people with visible disabilities in unsuitable locations, and while there’s less of it, servers often ask a companion what a disabled person desires. See the list on 52-53 for many other real-life situations.
• One can also get stuck in a loop: an agency or company can’t legally say no, but never get around to saying yes.

Kenny mentions a medical model of disability (10ff). It is one of two that are generally used, the other being social.

• The medical model focuses on medically diagnosed impairments as something to be fixed and made “normal.” It is an individual point, and leads to variations from “normal” being labeled as “disorders.”  
• The use of “disorder” in a diagnosis is increasingly challenged. Trauma responses, for one, are not disorders: as one member stated, PTSD is “a reasonable response to an unreasonable experience” and a healthy response, which, if not expressed, can lead to serious problems. (An emerging term is “moral injury”). Likewise, neurodiverse conditions such as Autism Spectrum Disorder are not something that is wrong, but a different pattern of activity. (For a thoughtful article along these lines, see  Justin Garson, “Seeing Depression as Having a Purpose Could Aid Healing” Pyschology Today June 19, 2023. https://www.psychologytoday.com/us/blog/the-biology-of-human-nature/202306/how-seeing-depression-as-purposeful-may-promote-healing)
• Stigma is often part of a diagnosis, and especially mental problems. “Mental illness” is often scapegoated in media and politics. 
• Mental illness is often wrongly equated with neurological conditions.
• Reality is that those with mental illness are far more likely to be the victims of violence than perpetrators. Mental health is often difficult to get covered by health insurance, compounding the problem.
• One result of the medical model is the charitable appeal, portraying people with disabilities as the object of pity, and asking others to provide relief through patronizing appeals for donations and actions that involve doing things for disabled people. The Labor Day Telethon is perhaps best-known in American culture, and it has led to much discussion of “inspiration porn.” The term was coined by the late Stella Young, known in disability circles for saying that a good attitude can’t make stairs into ramps. Rather than celebrate accomplishments in context, it holds disabled people up as inspiring examples of “overcoming” their disability and is regarded as exploitation by many.

The social model acknowledges the reality of medical diagnoses and impairments, but maintains that people are disabled by built environment, culture, and similar factors. The diagnosis not the ultimate arbiter. As a cultural model, it challenges what is considered "normal." It focuses on Universal Design, a growing movement in the design of facilities that enables community integration. For example, ramps and power doors also benefit delivery people and parents pushing strollers.

• As we have been reminded this summer, following the Revised Common Lectionary, Genesis states that God’s creation is good (Genesis 1.31) in all of its diversity.·
• In churches, the social model is reflected in full participation and use of “ministry with” rather than the charitable model of “ministry to.” It is not an “outreach ministry” but an “inclusion effort.”
• Concerns in churches include community integration and inclusion, leadership development (many still refuse or place serious obstacles to disabled leaders at any level).·       

·      The group is now taking a break. Sessions for Fat Church are scheduled after the break, and then there will be sessions covering all three books. A resource list for this book will follow soon.

Stürmisch bewegt

Recently, disabled people and advocates have been speaking about another “ism” that diminishes people—ableism. As I have joined with others in explaining, ableism makes false assumptions about disability and leads to discrimination and exclusion. So I am pleased to join the Psalmist and be glad to enter this house of the Lord and share some thoughts about reading a new book:

Kenny, Amy. My Body Is Not a Prayer Request: Disability Justice in the Church. Grand Rapids, Michigan: Brazos Press, a division of Baker Publishing Group, [2022].

Gustav Mahler described the final movement of his first symphony as the cry of a wounded heart. This book is a similar cry—more than once, Kenny states that she is screaming. The stormy dissonance of the opening of the movement is reflected in Kenny’s first page as she tells of an encounter: “God told me to pray for you . . . . God wants to heal you.” Like Kenny, many of us have been there as the ultimate ableism loads presumption upon presumption and tops it with a divine imperative. 

These early chapters are hard, because the scream story continues with more recitations that will be familiar to many people with disabilities. Like much racism, ableism lurks in structures beneath the surface, formed on a foundation that we often overlook. Accommodations are considered an add-on, a patch to the structure, not an essential of design. 

The implied statement of ableism is that something must be fixed, that people with disabilities are not whole, and that our faith is lacking. This leads the author to state that the real need is to be freed from ableism. In the same process as outlined by Beth Allison Barr, where cultural notions create faulty theology, we see a chain of thought: disability makes people uncomfortable, leading far too many to presume sin lies behind it, with the result that scripture is twisted to fit presumptions while overlooking the passages that don’t fit those cultural notions.

Culture teaches us that people are valued for their productivity, and disabled people are not productive (and if they are, they require costly accommodations and extra time). We are “ministered to” instead of “with,” reinforcing a segregated second-class status, and silenced from instructing others. When the ADA was adopted, some churches strongly opposed it, and many are still not compliant or accessible (or when they are, clumsily so). It’s a sign that disabled people are not considered fully human, which both picks up from and contributes to eugenics.

What to do then? After Mahler’s cry of wounded despair, hope emerges in themes of contemplation that transform the despair. Kenny finds hope in disabled people who, among all others, can best grasp that Jesus shows the way to transformation. His call to μετανοια has urgency. Although generally translated “repent,” which has become a religious buzzword with no more meaning than empowerment or some of the other corporate gibberish that has infested our language, its call is to renew the mind, to transform our ways. Instead of the medical model of fixing things, she asks us to embrace disability and use that model in interpreting Scripture. In this light, the healing narratives are not about cure and eradication, but restoration and acceptance. Old stories gain new life: Jacob is changed from a schemer to a forgiving Israel with a limp.

In these and many other examples, we come to understand interdependence in a renewed and transformed society. Accessibility becomes the beginning point, not a destination or a checklist. All of creation is good; and our eschatology is also transformed: Micah says that God will gather the lame and those who have been driven away.

Mahler is a “heavy” composer of deep themes and subjects, but he has his own kind of wit if one will hear. So does Kenny—and it is copious, and often directed at the medical model. Referring to cayenne pepper ointments, she writes that they only made her hunger for a vindaloo curry; or that despite x-rays and radioactive injections, she never gained superhero powers as Marvel stories might lead one to believe. Turning her sights to the Bible, she states that the description in Daniel 7.9 sounds like “a wheelchair to me, and one that gives new meaning to burning rubber.” Ezekiel 1.15-21 describes God with a massive mobility device that is lifted by four angels with fused legs and colossal wheels that encase wheels that glisten like topaz. If God uses a fiery, shimmering, turquoise wheelchair why shouldn’t we?

Ableism, with its cultural roots, is often selective. In one example, she asks if people with eyeglasses have been targeted for prayers of cure. John Calvin even attributed their design to science and learning as a gift of God that correct natural changes, while leaving other devices (such as mobility aids) to the realm of differences resulting from the corruption of sin. (Selective ableism note: of course, he needed glasses for himself. There’s an interesting YouTube video exploring this idea). Why can’t these other adaptive devices become mainstream, and even display a little fashion? But then, as Kenny writes, it is human-made stuff that is orderly (especially for lawyers-turned-theologians), while God’s canvas of creation is wild, unruly, and exquisitely messy.

In the end, Mahler finds a sort of peace. It is somewhat defiant, especially near the end, as he directs the horn players to stand and point their bells outward. He later went on to write several more symphonies, each of which explores an aspect of transformation, of finding peace, of living with meaning in an exquisitely messy world. I look forward in hope that Kenny will also grace us with more of her thoughts and findings as well.

Disclaimer: I borrowed this book from the Indianapolis Public Library, once again to the consternation of someone, I'm sure. The only stipulation was to return it within three weeks, which I did. 

Still marked

Still marked: a review and response to Jenifer L. Barclay, The Mark of Slavery: Disability, Race, and Gender in Antebellum America. Urbana: University of Illinois Press, 2021.

In 1857, a writer praised the New York Daily Times for teaching “coldly and calmly” the “indubitable fact” of white supremacy. As his opinion letter continued, he noted the need for “wardship” of those incapable of self-government, which included infants, disabled people, and people of color (J. Buford, “A Southerner’s Opinion of the New York Day Book,” New York Daily Times, 26 January 1857, 14).

The “indubitable fact” and its reach is a reminder of Douglas Baynton’s observation that, as a culture of “normal” was taking root, one response that might be heard was that one was not disabled and therefore ought not to be the object of discrimination—but not to challenge allowing discrimination.* At a time when many social institutions and assumptions were under scrutiny, various standards were emerging, with results that are still with us. Among these were supposedly Christian notions of sin as a contributor to difference. Although starting to give way to developing science and concepts of what was “normal,” prevailing notions held back from a clean break: judgments continued a long-standing practice of ascribing various aspects of disabling conditions to unrelated occurrences and then used them to justify oppression and inequality. In turn, such uses contributed to notions of disability as defective or abnormal instead of aspects of diversity.

Economics is the first topic covered. The author shows how disability has led to a presumption of lack of economic value. Under slavery, with its poor working and living conditions, accidents, and disease, an image of uselessness therefore became associated with disability. This idea returned in Nazi Germany to justify the murder of disabled people.

The next topic is medical advances, some of which led to what we now refer to as the medical model of disability, one which views differences as errors or imperfections to be corrected. The people involved were viewed as feeble objects of charity (have you seen a commercial or telethon lately that portrayed disabled people like this?), and provided ground for the view of slavery as a paternalistic “positive good” that took care of those unable to rise higher.

If you have seen one of those commercials or telethons, have you also seen presentations about how inspiring someone is because they have overcome the obstacles placed in their way by an ableist society? Also known as “inspiration porn,” such coverage is an almost-oppose to the portrayals of uselessness and pity, but they are just as dangerous. Rarely are the social and physical roadblocks noticed when praising someone for “overcoming” their disability.

In many settings, these attitudes of uselessness lead to subversion: slaves and disabled people gather unnoticed and largely unmonitored, engage in various kinds of aid, whether practical or creating a sense of stability and social togetherness in a liminal setting. St. Paul’s paradox of strength in weakness became a recasting of weakness as strength, transforming the classical trickster of myth into a powerful person with qualities of great spiritual strength. Disability is capable of being subversive when it gains attention. However, it’s generally minimized or shut out. Ever wonder why?

Thus arises the author’s point that one failure of abolitionists who crusaded against slavery was not severing the link of racism and ableism behind social hierarchies (150). In an example of the “law of unintended consequences,” these anti-slavery arguments used ableist language to reinforce the need for perceived benevolent guidance, and outsider-directed care. This continued with speech about a deformed nation that reinforced a stigma of disability, and as noted, contributed to inspiration porn and obstacles today. Sympathy and derision went together to minimize and marginalize anyone who was different. Aided by the then-new art of photography, freak and minstrel shows worked with photographs of slave treatment to create sympathy without empathy or improvement for those in need.

Disability is also a “marker of hierarchical relations”— just as slavery, forged in distinctly racialized ways throughout the antebellum years—shaped and defined power dynamics. But what persists is not an end to hierarchies, but new paths of control. Disability continues to provide images and symbols of such control—a person perceived as successful has traits associated with bodily ability and seeks to reinforce such stereotypes. People whose bodies or minds do not match the standard are judged as unable, unintelligent, and irrational. They are shut out of inaccessible locations, forgotten when podcasts are not captioned, overlooked when their minds take a different approach, and only grudgingly granted an occasional presumption of competence. Still subversive, still a threat. Still marked.

 

* Douglas C. Baynton, “Disability and the Justification of Inequality in American History” in Paul K. Longmore and Lauri Umansky, The New Disability History: American Perspectives (New York: New York University press, 2001)

Disclaimer: I borrowed this book from the Indianapolis Public Library, promising to return it within three weeks, which I did, even though they no longer threaten to fine late returns. In this I was aided and abetted by borrowing it as a Kindle book, which is automatically returned.

 

The New Miracles

 The New Miracles: a response to Katie Booth, The Invention of Miracles: Language, Power, and Alexander Graham Bell’s Quest to End Deafness (New York: Simon & Schuster, 2021)

Classical tragedies revolve around a plot line of a character who acts out of a perceived noble intent. However, the character overlooks a flaw in that intent, and that flaw ultimately brings the character down. There’s a way in which this is true of Alexander (Alec) Bell, the inventor of the telephone. Bell sought to make communication easier—but in the process, overlooked that he sought to quash a culture. His efforts to promote oralism and bring an end to the use of sign language, and his promotion of early eugenics, have left a legacy that Deaf people still contend with, even though the end result has been to open new channels of communication. 

Booth explores this complex legacy as she opens the book with a story about her Deaf grandmother being in a hospital. Whenever grandmother sought to sign with someone, “she was treated as a bother,” and the staff would only respond to Booth or her mother’s spoken requests (3). Some discussion of law corrected parts of that problem, but it led to reflection on her grade school history classes, where she learned that Bell invented the telephone. This seemed “as absurd as introducing Adolf Hitler as a vegetarian who once ruled over Germany” (12).

 

Pursuing a more complete story, Bell’s work began with his father, who sought to devise a universal alphabet for missionaries. Using this, they could read the Bible aloud in any language, even they didn’t understand it. (We’ll save the theological discussion of this notion for another post). Believing that speech was what made one human, it followed that any sentient being needed to learn to speak—with a voice, not with signs. Despite abundant examples, which included his own mother, Bell stuck with that notion, which led to the idea that being Deaf was a burden, a marker of an unacceptable difference, and something to be eliminated through training and marriage restrictions.

Bell lived in a time of change: industrialization was creating systems emphasizing and transforming “normal” from mathematics to identity and proclaimed them as the path to a new age through eugenics. “Freak” became the umbrella term for racial, ethnic, developmental, gender, and physical differences. The tragic flaw enters: there is little indication that Bell was insensitive to suffering and inequality. Booth recounts several instances where he was distressed by racial discrimination. But, in a move that we all might be forced to confess, he did not recognize his own involvement in “a larger struggle between normalcy and difference, between saving and being saved, between empowerment and charity” (77), thus setting the stage for the tragic character’s downfall.

John Wesley was an admirer of the classics and early church fathers who struggled with these concerns. Today’s “nothing about us, without us” was not yet a motto, but concerns that those on the margins should be heard are clear from his writings. He famously “consented to be more vile” – to change his ways in seeking inclusion. Sadly,  Bell followed the thinking of many in his time who saw defects as something to be eliminated rather than embrace more social models and accommodation. Today the struggle continues: do people who are different have “special needs” or functional requirements? Are they included in leadership, or are they a target group (ministry with or ministry to)? Is a difference a weakness to be hidden? As the author notes, does empowerment come through assimilation or recognizing and honoring diversity? We still struggle, which is why the classics are still with us. The new miracle, as Teilhard de Chardin wrote, will come when we harness the energy of love, the love that was central to Wesley.  

Normal abnormal disclaimer: much to the chagrin of various greedy corporations, I borrowed this book from the Indianapolis Public Library, and even though they no longer charge late fines, I did return it on time.

 

 

 

… just a setting on the dryer

 A review and response to Jonathan Mooney, Normal Sucks: how to live, learn, and thrive outside the lines (New York: Henry Holt and Company, 2019).

What does it mean to be normal?

This a meme I used to introduce the topic “the fraud of normal” when teaching 20^th century historical developments. It often drew the interest of the diverse lot of aspiring artists in the class.

Mooney starts his exposition much as I did—noting that “normal” is only a fiction of statistics, and while the idea has been around for some time, it gained particular prominence at a historical time of  social change. The idea of normalcy has a history, and much of it is related to the history of ranking and stratification that has created a caste-effect in modern life. Both of these have roots and effects in emerging divisions in the middle of the 20^th century, and they continue today, reaching far beyond their origins as distinctions become accepted standards.

One often hears the saying “history is written by the victors,” and so are social standards. In a parallel to history, “normal is what is called normal by people who are called normal” (36). That leads to an inherent bias, which is why I challenge those who talk about “history is there whether you like it or not” to include more than the accounts of the winners in their statements.

 “Normal” is a form of self-justification from a group holding power. One of the results of this phenomenon of self-justification is the casual use of various slurs in everyday language, which leads to a lack of recognition of the reality of the problems from many in a place of privilege (for an example, see “The harmful ableist language you unknowingly use”). In a steadily compounding spiral, society compounds its habits of overlooking the contributions that people who are different bring to the table.

The effects of this enforcement of “normal” have been devastating, resulting in invisibility and dehumanization. The idea of eugenics grew from its fascination with removing difference, coupled with quantification movements (i.e., statistics that measured deviation), all focusing on isolating and labeling some people as a problem.

To learn more about the effects of any change, one should ask what life was like before the event. In the case of normality, historical documents show us that differences were once celebrated, perhaps with an attitude that they encompassed touch of eccentricity or oddness, but accepted as part of a diverse world. It was the rise of the field of statistics in an increasingly scientific-oriented society that gave an impetus to the idea. By 1914, 36 states had institutions that segregated anyone considered “feeble-minded” and by 1930, 41 states banned non-eugenic marriage or practiced forced sterilization. In 1935, such ideas became the law in Germany. We know how that went, don’t we?

The idea of normal is also where the popular modern inspiration porn slogan of “overcoming” disability comes from. It proclaims that enough heroic effort can do anything, which led the late Stella Young to critique the popular aphorism that “the only disability is a bad attitude” as she reminded us that “no amount of smiling at a flight of stairs has ever made it turn into a ramp.” 

This book is highly recommended (along with Mooney’s Facebook page)as another example of the new day for many that has come with the growth of the civil rights movement and its social theory of disability: what disables me is not anything of myself, but the environment. With that, the theological world has slowly begun to see disability, like any difference, as an element that is to be honored as part of the divine plan. “Am I normal? No, I’m not. No one is” (216). There is no one way to be a human—to be human is to be diverse.

Disclaimer: once again, I have irritated Amazon by borrowing this book from the Indianapolis Public Library. As per agreement with them, I returned it within the specific time period, and hope that others are now appreciating it as well.

 

 

 

A caste for casts

 A review and reflections on my field: Caste: the origins of our discontents, Isabel Wilkerson. New York: Random House, 2020.

It often happens, that those who live at a later time are unable to grasp the point which the great undertakings or actions of this world had their origin…. all things… are at their beginnings so small and faint in outline that one cannot easily convince oneself that from them will grow matters of great moment. -- Matteo Ricci, Historia in Jonathan D. Spence, The Memory Palace of Matteo Ricci (New York: Penguin, 1985), 267. 

Caste opens with a story that illustrates Ricci’s statement: a 2016 heat wave in Siberia that melted the permafrost and unleashed toxic anthrax in a community. The spores had never died, but laid dormant, awaiting circumstances that would bring them to flourish. Wilkerson likens this to a building with a small defect in a beam that, over the years, imperceptibly weakens the entire structure. In all of these cases, an unnoticed and unintended flaw springs up to cause problems of “great moment.”

That small defect in the beam is caste, a human hierarchy that leaves in its wake social rigidity, power structures, stigma, and dehumanization. Caste facilitates but is not the same as racism, and is also a more inclusive explanation of the phenomena of exclusion, one that reaches beyond race. Often justified through religion and culture, caste becomes an underlying and often unconscious structure in our lives. In this book, Wilkerson examines three caste systems: India, Nazi Germany, and race in the United States.

Race, as I often explored in teaching, is a recent social construct (hey, so is disability—which we’ll come back to). It has no basis in biology, and originated from the transatlantic slave trade. The social construct of racism refers to dislike or disadvantaging a person or group because of the ascribed race. Caste is similar, but creates a hierarchical system of enforcement, one that tends to be impersonal and does not require personal dislike. Caste becomes a routine pattern, with unthinking expectations based on a perception of natural order.

The Indian system is well-known and oldest. The American system developed from the arrival of the first Africans in 1619. With a racial basis, it resulted in laws that defined and enforced distinctions, such as who could be enslaved for life and who could not, who could be Christian or not, or even who was regarded as having a soul or not. In this way, American slavery, which lasted until 1865, was not the same as that of the ancient world. In turn, the justifications behind this led to eugenics, which emerged full-blown in Nazi Germany, with distinctions and definitions derived from American standards.

The eight pillars of caste begin with divine will or order, which leads to inherited status. From this there is a need to control marriage, which guarantees purity within the dominant group. This is enforced through absolute standards, occupational hierarchy, dehumanization, and the use of terror, fear, and psychological degradation to reinforce status. A recent article about a discrimination lawsuit provides a perfect illustration of all of these.

The caste system creates and requires inequality. In turn, that generates dissent, rivalry, distrust and lack of empathy.  An excellent example is the story of Cotton Mather’s slave Onesimus, who in a 1721 epidemic shared an African vaccination against smallpox. Many would not use it, as they assumed nothing from an African slave would work, but it was, after many deaths, proven useful. Sometimes the results are violent, such as the 1921 Tulsa riots where a successful Black area was wiped out (this is one of several incidents graphically described in the book that illustrate the atrocities of the American racial legacy).

There are also sociological implications. Descriptive terms are applied, such as black and white, which are not at all true. I am pink and my neighbor is brown. But gradations are forgotten in caste systems, which pull people apart into categories, label and then reinforce the status consequences of those categories.

After reading the book, I looked at some reviews. It wasn’t a shock to find a group who thought that it  is nonsense. It was no surprise to find that those reviewers seem to have a place of privilege in the system—and that they don’t seem to have thoroughly read the book. If they had, the story of Albert Einstein fleeing Germany, and his subsequent championing of Marian Anderson, the singer who could not stay in segregated hotels, might have hit home. Einstein stated that as a Jew, he could understand and empathize with how black people feel as the victims of discrimination. Einstein went on to take an active part in NAACP efforts to end lynching and promote civil rights. If you were unaware of that part of Einstein’s life, it’s a good illustration of the need for a full history.

I cannot claim to fully understand what Black people go through, any more than temporarily able-bodied people can claim to fully understand living with a disability. But like Einstein, I do share with other people who live with disabilities an understanding of how discrimination works and how it wastes human potential. We can all empathize and work with others to end that waste. In that regard, this book is not the final word on that needed full history, but it does provide a solid base for further work. 

In my own field, people with disabilities have long felt the described sanctions of caste. Divine authority is shown in claims of a condition being the results of someone’s sin or lack of faith. This leads to calls for submission to healers. There is also control of daily activities, whether from lack of accommodation or inability to pay the high price of suitable transportation. And the phrase “marriage equality” also rings with overtones of control as meager benefits are cut or genetic purity is pursued.

Thinking about those sanctions, Wilkerson brings up two points. First is that we are not personally responsible for what people who look like us did centuries ago—but we are responsible for what good or ill we do to people with us today. Theologically, we are all responsible for treating others as we would like others to treat us. Second, we don’t get to tell a person with a broken leg or a bullet wound that they are or are not in pain. We should listen to the cry of those who are suffering.  

Disabled people are also well aware of those who tell us what we need.  These would be the people who organize telethons portraying us as people to be pitied, adorn us with childish terms such as “special needs,” advocate against insurance coverage reform, call us an “inspiration” and urge “overcoming,” and otherwise put us in a system requiring that we are docile and submit to the system and don’t come up with ideas like “nothing about us without us.” Disabled people are also familiar with stratification structures that leave us behind. This book shows an important need not only in race, but for disabilities, and especially for those caught in the intersection of both.

 Disclaimer: I borrowed this book from the Indianapolis Public Library, with a promise to return it within three weeks. That promise has been kept. 

"About Us"

About Us: Essays from the Disability Series of the New York Times, Peter Catapano and Rosemarie Garland-Thompson, editors. New York: Liveright Publishing, 2019. 

This book is diverse—as it ought to be, for disabilities are diverse—covering at least physical, neurological, intellectual, auditory, visual, congenital, acquired, and, to borrow a phrase from the (proper) translation of the ancient creed, “seen and unseen.” It collects 60 essays from a New York Times series of personal stories describing various aspects of living with a disability. 

The collection begins with a foreword that discusses eugenics, the pseudoscience that began with Francis Galton, and which, after some preliminaries in the United States, led to Hitler’s atrocities. While eugenics has generally been disavowed around the world, pockets still remain, and more dangerously, an unseen residue still infects many policies and attitudes (including in the United States, where a Supreme Court ruling favoring it still stands). 

Thus a valid claim that while disabled people lead “rich lives,” frequent limitations on work and other activities (which are not always valid, but socially constructed) lead to devaluation. One reason this happens is that one’s experience of living with a disability is very different from outside perceptions—again, “seen and unseen.” This is the reasoning of the familiar saying “nothing about us, without us” which is recalled in the title.

The diversity of the book makes a summary difficult. But there are several points which resonate with me and conversation partners. The first is the language that is used about conditions. There is less talk today of disability being a curse, tragedy, misfortune, or individual failure, but there is a lack of agreement on what terms to use. Perhaps as a more open body of history becomes part of our culture, and a wider, more diverse community flourishes, we will gain a better sense of cultural place and how to share. 

Among the most stigmatized conditions noted in the book is mental illness. Much of what passes for discussion these days presents a monolith of danger. The truth is that both sanity and mental illness lie on a spectrum, and, most people spend some time at various points on that line. 

Everyone is only an accident away from becoming disabled, and this proximity makes disability scary to most people. But rather than compassionate care, the response is often ableism. Ableism leads to categorization that devalues people. This is especially prevalent in the medical model of dealing with differences, where we become patients needing treatment rather than human beings with differences. 

Thus ableism is an important factor in disability life, and has recently been receiving the attention it deserves. As with racism and sexism (among others), when disability is not considered in planning and design, ableism is at work. When it’s not considered, we end up with haphazard routes, difficult-to-find elevators, inaccessible planning, and other situations that are reminiscent of separate doors for blacks during the Jim Crow era. It’s all in a day’s life for those who live with the ultimate American irony—bootstrapping by refusing to give in to a body that one cannot control, and that medicine offers little help with. It also brings to mind the Nazi T4 program, which preyed on these factors. As my friend Kenny Fries, a scholar of the program states, it brings us to address the value of life, and reaches beyond abstract affirmations to the reality of ableism while ignoring social and design problems. .

This creates a world in which we must be resourceful and adaptable as we await and strive for a world of universal design. The example of OXO is noted here—the company began with hacks of kitchen tools to accommodate arthritis. Will that gain a chapter in history, or be overlooked yet again—or written off to some other origin?

The question of theology is always “where is God in this?” So while this is not a theology book as such, all of the above bears on theological concerns. And there are explicit theological questions and allusions. “People with disabilities are the unexpected made flesh” (53), just as the Gospels portray the irony of an unexpected messiah. There are also, as most of us would expect, references to faith healing and prayer for cures. A good question is raised in many of these accounts—who needs healing, the person with a disability or the attitudes of society? When one reads the healing stories in the Gospels carefully, it is not the disabled person’s faith, but that of the social group gathered around him that brings change. Neither is that change imposed. Bartimaeus was first asked what he wanted, and his answer was listened to – once again, “nothing about us without us.” Yes, there are also stories of messages from God delivered by those who are not involved. As I commented here, God is perfectly capable of sharing her plans with us, leaving us to wonder why it seems that this information is never shared with those who are most directly involved. Is that the ultimate ableism?