A review of and reactions to Judith Heumann, Being Heumann: an unrepentant memoir of a disability rights activist (Boston: Beacon Press 2020).
Wednesday, February 17, 2021
Monday, January 11, 2021
A review and thoughts about James Essinger and Sandra Koutzenko, Frankie: How One Woman Prevented a Pharmaceutical Disaster (North Palm Beach FL: Wellspring, 2019)
Many people will remember reading Upton Sinclair's The Jungle in school. The book, which tells the story of an immigrant family who are taken advantage of at every turn, gained fame for something else: its descriptions of food processing, which led to the author's comment that he had "aimed at the public’s heart and by accident hit its stomach."
Today, as we witness gender disparity, disability discrimination, and political manipulation of public agencies in the face of Covid-19, there's another such story lurking in the life of Dr. Frances Oldham Kelsey (24 July 1914 - 7 August 2015). Better known as “Frankie,” Dr. Kelsey, M.D. (note that, ye purveyors of academic and gender nonsense), has faded from public recognition, but in her lifetime, she stood out as a government employee who faced down pressure from corporate chiefs as well as other government agencies. When she was, by random assignment, given the task of evaluating a new drug for approval in the United States in 1960, she found numerous problems with the studies, and the responses did not satisfy her. As she probed deeper, she found more problems, and thereby stopped a short-sighted approval of a drug now regarded as dangerous—thalidomide.
The story itself is of interest in understanding how regulations should work, and how other forces try to shortcut them. There is some scientific discussion, but it ought to be within the province of anyone who has passed biology in high school (although sometimes, seeing posts on social media, I think this might be worth more worry). The style is not academic—it is a journalistic report, replete with comments about corporate greed. Much of this seems to be in hindsight, and it sometimes forgets the workings of scientific method, but this does not detract from its insights.
Reading the book also brought to mind a number of cultural points. The first is the treatment of women in the professions. Her given name, Frances, is often confused by those who have lost track of their Latin declensions and gender markers; added to this was being known almost everywhere as “Frankie.” As a result, she received an invitation to the University of Chicago from a man who felt that women were not able to handle science. To avoid embarrassment, the university was forced to accept her. And her concern for drug effects on pregnant women was also roundly ignored by many men in the field.
There’s also a section on the origin of pharmaceuticals in modern life, which includes how Germany became an early leader it the field—from a combination of Nazi experiments and a way to rebuild the post-war economy. And if one follows the thread, there’s a good bit here about the influences of greed, communication delays in a pre-internet world, and bad translations.
In November 1961, the first reports of birth defects from thalidomide became public. One of the results parallels that of Sinclair: legislation that required the FDA to provide more comprehensive safety studies before approval of a drug, and other regulatory powers such as the ability to order the withdrawal of a drug if the need arises. Safety did come to the fore, and while the people were heard, in the long term, much of this has been lost.
Historically, the lessons of this book include the need in today’s atmosphere to understand the historical background of laws, including regulatory agencies. Another area addressed are recent measures that have been taken to compensate thalidomide victims. This is mostly in Europe and the U.K., as thalidomide was not approved here and its use is strictly regulated today. But neither across the pond nor here has the cost of living with any disability been given adequate consideration. Social and employment discrimination, marriage restrictions, disability insurance payments, the high cost of care and adaptive devices, all remind one of the exploitations which Sinclair addressed. While the remedies of his time and the 1960s rightly needed to be handled, there remain serious problems today.
Disclaimer: I borrowed this book from the Indianapolis Public Library, and promised to return it by the due date, which I have done. On my checkout receipt, the Library informed me that I've saved about $400 by using their services through the year. So its no surprise that Amazon and others have proposed ending them.
Thursday, December 10, 2020
A review of Rae Linda Brown, The Heart of a Woman: the life and music of Florence B. Price (Guthrie Ramsey Jr, ed.) Urbana: University of Illinois Press, 2020. (NB: the author died in 2017; the editor updated some of the information for publication).
Music, the universal language! Yet how often is it clouded by assumptions, such as being divided into two worlds, one the product of grumpy old white Europeans, and the other dominated by young flash-in-the-pans who often trade pyrotechnics for talent? But like many others, this is a false dichotomy, and this book is an excellent example.
While listening to “Performance Today” one morning, I heard something unfamiliar but interesting--folksong settings by Florence Price. They reminded me of Beethoven’s similar settings, along with Bach’s appropriation of popular tunes in his works. Further commentary and a little research gave more information, and when I learned about this biography, it was a must-read.
Price, born in 1887, died in 1953. Her life spanned the rise of legal discrimination, some of the first tentative steps to end that system, and challenged a dual glass ceiling in music—women and color in the formal settings of orchestral music. And she reached into the realm of popular music with taste and style.
There are many parallels here to events found in Isabel Wilkerson’s Caste: the origins of our discontents. For example, Brown refers to an early Jim Crow law, the Tillman Separate Coach Act of 1891 as “caste legislation” passed not out of sudden aversion, but in rejection of the social and political advances of middle-class blacks (29). It was an event that influenced Price's life.
For a young musician such as Price, discrimination was particularly acute, as most whites thought of themselves as cultured, while Blacks were presumed to lack culture and refinement—as well as the ability to gain it. But all the same, and partially motivated by such Jim Crow laws, Price moved from Arkansas to attend the New England Conservatory of Music in 1903. In her course of studies over three years, she did well. But she still faced racial discrimination, especially in obtaining housing.
At graduation, she returned to Little Rock. At that time, she faced continuing efforts to disenfranchise Blacks, as well as unequal pay. So she took a teaching position at Clark University, Atlanta. After a short time, she returned to Little Rock and married a lawyer, Thomas Price, who was active in legal challenges to discriminatory provisions. She also followed a typical path: she soon left full-time teaching to raise the couple’s children, but did continue private lessons, which gave the opportunity to compose exercises for her students.
In another Caste parallel, increasing racism through the 1920s, turning into outright terrorism from groups such as the KKK, prompted another departure. The family moved to Chicago in 1927. Chicago was seen as a promised land to many, especially musicians, being the center of jazz and the developing gospel movement. Here, Price continued to write songs, and also took up a pen name, “Vejay,” under which she wrote musicals and commercial jingles. But all was not well. Reflecting the experiences of many in the Depression, in 1931 she divorced her husband on grounds of abuse, and then remarried in six weeks.
But there was breakthrough: in 1932, she completed her first symphony and won the Wanamaker Foundation prize in that category, along with another for her piano sonata. Part of the prize was that the symphony was played at the 1933 World's Fair by the Chicago Symphony under Frederick Stock.
By 1934, she was separated. In 1935 she travelled to Little Rock to play a benefit concert at Dunbar High School. In another parallel illustrating the events of Caste, the school’s previous building had been condemned. The school board authorized a new building but provided no funding. The Rosenwald Fund agreed to pay for a building on the condition that it would be used for vocational training only—leading to menial jobs, trapping its graduates in the caste system. The new building opened in 1930, by which time the curriculum included the liberal arts. In comparison, the (Central) Little Rock High School, built in 1927, had much larger facilities but was restricted to whites only.
After this, Price faded on the scene, apparently due to health problems. In the middle of planning a trip to Europe that would include promoting her music she died in Chicago on June 3, 1953. Much of her music was never published, and generally thought to be lost. But a 2009 discovery at at house in downstate St. Anne turned up more compositions, and some have also been found in Arkansas.
Price appears to have been a woman of her times, but one who also sought to reach beyond social limitations. Brown notes that she lacked the assurance and aggression which are often associated with men, characteristics that are viewed as necessary in professions to get ahead (often expressed as a man is confident, a woman is bossy). As well, race compounded that. Although she did well in Chicago, where the Chicago Defender referred to her as the dean of composers, exposure to other areas did not happen in her lifetime.
While that wider exposure did not happen during her lifetime, to some extent, the ready availability of recordings has begun to change that. And, as I was writing this, came news that the Philadelphia Orchestra has scheduled all of her symphonies for performance over the next seasons. These will be a welcome change for anyone interested in expanding their musical horizons.
Disclaimer: I borrowed this book from the Indianapolis Public Library on the condition that I would return it within three weeks. I kept that promise. I also have an undergraduate minor in music, funded by a scholarship to Indiana University back in the days when the state recognized and encouraged learning to think.
Wednesday, November 25, 2020
Lisa Gutwein with Rowan Ambrose, illustrator, Doorkins the Cathedral Cat (London and Philadelphia: Jessica Kingsley Publishers, 2017) ISBN 978-1785923579
A few weeks ago, I wrote about the memorial service for the resident cat of Southwark Cathedral, Doorkins Magnificat.
So having seen the movie, what does one do next? Read the book, of course. Our library had it in the Children’s Room, but they let me borrow and read it anyway.
a short book, all of 40 pages. About half of it covers a week in the life of
Doorkins—children visiting, posing in selfies, escorting a bride down the
aisle, the inevitable meetings, the Queen stopping by, meeting with
parishioners, and of course, getting hair on the bishop’s vestments. It’s all
told with a fine dose of whimsy and wonderfully illustrated.
The other part of the book is a series of photographs of Doorkins at work around the cathedral. It's a charming series that reminds us of the value of rest. And that brings to my own thoughts, reinforced by Blaze snoozing on my lap, that it's time for a nap. But before I go, a reminder of the saying I quoted before: “she entered and we made her welcome. People concluded that if this little cat is welcome, maybe I am too.”
On this Thanksgiving week here in the States, one that began with Christ the King and the lesson of being kind and helpful to others from Matthew 25, let’s remember that, say deo gratias, and make everyone welcome.
Wednesday, November 18, 2020
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.
Disclaimer: I borrowed this book from the Indianapolis Public Library, with a promise to return it within three weeks. That promise has been kept.
Thursday, October 29, 2020
From time to time, I have been known to ask "where are the disaster theologians?" This question refers to the assorted preachers and politicians who are quick to interpret hurricanes or similar events as expressing divine judgment on America, usually for betrayal of their favorite non-biblically-based cause. The ability to find significance in such events is all the more curious for their way of overlooking other events, especially of the sort taken as signs and wonders in the books of the prophets.
Therefore, it is suitable that I acknowledge a convergence, and make some theological hay of it. October 29 is National Cat Day, and follows closely National Black Cat Day on 27 October. Hallowe'en with its inclusion of cats is only a couple of days away.
And linked to those is the cycle of creation. Archbishop James Ussher of Ireland is best-known for his chronology, worked out between 1650 and 1654, that set the first day of creation as the evening of 22 October 4004 BC. Although problematic in many respects, it is worth noting that his notion places us on this day in the midst of the arrival of animals and humans seeking companionship. So all of the signs and dates are upon us, even if slightly manufactured.
Doorkins Magnificat, a resident of Southwark Cathedral in London, crossed the Rainbow Bridge on 30 September. Yesterday, she was remembered in a memorial service that celebrated creation, divine love, and, of course, cats and what their lives tell us about life; you can view the service here. I also invite you to read this story of her life and keep this line in mind: “She arrived, she entered and we made her welcome. People concluded that if this little cat is welcome, maybe I am too.”
Well done, good and faithful follower. Rest in purrfect peace.
Wednesday, October 21, 2020
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?