Wednesday, February 17, 2021

Being there, being human: Lenten thoughts

A review of and reactions to Judith Heumann, Being Heumann: an unrepentant memoir of a disability rights activist (Boston: Beacon Press 2020).

From 1953 to 1957, a television show featuring Walter Cronkite sought to re-create historical events as if one was present under the title “You are there.” I recall seeing some of the re-broadcasts of this show in my early school years. I had much the same feeling of presence of those school years while reading Being Heumann: being segregated, repeated examinations, denials of needs for no good reason, and gradually learning that I was different. 

Hers is a story of self-discovery and a chronicle of the development of the disability rights movement. I am several years younger than Heumann, and an early beneficiary of her work. As is the case when I reach beyond the textbook's skimpy coverage and take extra time to teach about the civil rights movement, it is my hope that the younger generation of people of color and people with disabilities will come to understand how things were, where they have changed, so that in keeping with Santayana’s maxim, they may continue in a path of thoughtful change.

 

“Progress, far from consisting in change, depends on retentiveness. When change is absolute there remains no being to improve and no direction is set for possible improvement: and when experience is not retained, as among savages, infancy is perpetual. Those who cannot remember the past are condemned to repeat it."

Like Heumann, I came to understand that my presence wasn’t always welcomed by school administrators. Physical disabilities were equated with mental disabilities, and there were struggles to be mainstreamed. I was often dragged from class to take this or that test. I also sensed a change of tone when we moved across town and entered a different school, but hadn’t heard about the early federal laws that required basic forms of inclusion. As she writes, being first is often difficult, and there was a need to prove that one could do it—if you were allowed to try. Many were more comfortable with exclusion. Even today, the idea of making environments more accessible seems to escape many people.

Times change, but it may seem that some values do not. To the parents of a previous generation, disability was viewed in terms of President Roosevelt: something to be hidden or a medical condition to “overcome.” Although changing slowly, the social model now sees the issue as one of access and design. But disabled people are still knocking on doors where we aren’t welcome, or are regarded more as a fire hazard than as people.

 And thus began a cycle. A lack of inclusion leads to invisibility. Invisibility leads to a lack of planning for inclusion. Lack of inclusion leads to being ignored. People who are ignored don’t exist. Ah, but there was one place we could be seen—telethons! Helpless little children in need of charity, which meant that others knew best what we need. As she relates, grasping this cycle produced an understanding of a need to demand attention, which took the form of occupation of offices, and, eventually, recognition of disability rights not as a medical matter but as civil rights. Heumann was a leader in this effort, and her story is well-told and captivating.

Being Heumann cover: a photo of a light-skinned woman sitting on a chair

Michel Foucault reminds us that those who create “normal” often have unspoken or assumed standards, and enforce them by punishing deviance. In my city, we have just seen a flagrant demonstration of this principle. Over the weekend, a local art museum advertised for an executive director who would, among other things, maintain its “traditional, core, white art audience.” There's been a lot of media spilling of ink and electrons. There may be a protest: will it be accessible for once?

As Heumann notes, disability and race are linked, for the disability rights movement grew from the civil rights movement, and the two have always drawn on each other. Both are opposed to many of the norms that lurk beneath the surface. This construction of this ad reminds me that the standards of “normal” still stand. It also reminds me of students who didn't pay attention in writing class and tried to cover up that they didn't care when we covered inclusivity. It reminds me of the cheap (and ineffective) overlays that supposedly make web sites accessible to people with visual disabilities. Not only do they not work, they display to the world that you don’t care enough to do the job properly (for another example, see an article by David Perry). 

As we enter another season of Lent, there is yet a need to examine these assumed and unspoken norms. “Disability is a natural aspect of the human condition.… We are all human. Why do we see disability differently from any other aspect of being human? (196, 202).

Disclaimer: I borrowed this book from the Indianapolis Public Library in Kindle format, so it was returned automatically on the due date. Amazon doesn't publicize this very well, but a Kindle reader is available (free) for most computers and phones. 

 

 

Monday, January 11, 2021

The Jungle of Gender

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.

Book cover: a woman with close-cropped hair appears to be speaking persuasively

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.