Two Distressing Realities

Books Here And There hasn’t shied away from spotlighting and commenting on the difficulties in getting published and working honorably within the profession, but most of my comments are, naturally enough, about the industry as it exists within the United States.  It’s useful to be reminded, then, that if we think things are difficult here for writers, we should imagine how truly hard they are for writers on a continent like Africa, which doesn’t have near the publishing infrastructure or resources for publishing that the States or Europe do.  Because major publishers in the US and UK tend to focus their attention mostly on the handful of authors who bring in the most money per year, the movement toward collective publishing that we are seeing in Africa may well become the largest movement here in a few years.  Two alternatives, however, that Africa does not have might operate to forestall collectivism in the states:  self-publishing through Amazon and similar outlets, and small, independent magazines and book publishers, which are more numerous here than overseas.

There’s no doubt, though, any way you look at it, that most of us who write are merely one of many thousands of tiny cleaner fish trying to keep the great whale of the industry alive and vibrant while trying not to be cast off or eaten alive ourselves.

***

From books like Temple Grandin’s Thinking in Pictures to Steve Silberman’s bold foray Neurotribes, autism has gotten a lot of play in the public press and the medical profession over the last twenty years.  The condition is a genuine medical puzzle, and while most cases remain within the realm of those matters that are handled every day by doctors, hospitals, and parents, it is well to remind ourselves that autism can be dangerous, that those who live with it and try to care for those who suffer from it are occasionally at risk themselves.  Deciding what to do in such cases is not easy, even if one assumes the concept of self-preservation is going to take over and make the decision for us.  It often doesn’t take over.  Yet, even when lives are not directly at risk, they may be placed at an indirect risk because of the financial burdens of care the parents or guardians may be under.

Twenty-first century medicine’s greatest challenges are coming from the extreme ends of the age spectrum, involving both the very young and the very old, in elder care.  We knew forty years ago that this complicated era would be upon us.  It was back then that the arguments and debates began in medical schools and on college campuses about “quality of life” issues and “cost efficiency” in treating patients.  As 20-year-old students not directly faced yet with such practical and ethical challenges but asked to think about them, it was pretty easy to decide in the abstract what should be done on a case-by-case basis.  But now, faced with the actual realities of friends who are challenged daily with autism, and the living, flesh-and-blood choices that must be made every day in elder care, the voices we hear are not nearly as friendly, and the decisions we make are not nearly as easy.

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2 thoughts on “Two Distressing Realities

  1. Love this line, John: most of us who write are merely one of many thousands of tiny cleaner fish trying to keep the great whale of the industry alive and vibrant while trying not to be cast off or eaten alive ourselves.

    And I appreciate your foray into the literature on autism, too. I finished Neurotribes this spring–an amazing read–and have been revamping my whole view of the diagnosis (illness? different way of mental processing?) as a result. My autistic adult son (Jim is 26) has struggled for several years with employment issues. When we started to focus on strengths instead of deficits, things began to fall into place a little more smoothly. Part of that approach came from reading Silberman’s book…

    And, as a result of that reading adventure, I’ve been led to the work of Oliver Sacks, Kaye Redfield Jamison, and to a book called In A Different Key: The Story of Autsim by John Donovan and Caren Zucker. I resonate when you note that we knew this era was coming. Why am I only doing this reading now? But we have to start where we are, I guess, or never start at all…

    Thanks for another post that provokes and expands!

  2. You’re welcome! Thank you for your additional references, too. It’s *never* too late to start learning something new. . . never. If I recall the years correctly, Houston Baptist University had, in 1979-80, a required interdisciplinary course called Senior Colloquium, wherein we discussed emerging medical issues. The textbook we used was Howard Brody, *Ethical Decisions in Medicine,* (1976). One may still find it on Amazon. Houston was and still is a medical hub in this country. Baylor College of Medicine is here; so is M.D. Anderson Cancer Center (the expansion of which American Door Products is helping to build), and Houston Methodist Hospital, too; so, medical issues were and are part of the common discourse around here, and have been for a long time. Back in ’79, not everyone among students or faculty accepted “quality of life” as a valid argument to help define how far to extend treatment; nor was everyone on board with maintaining the rather–we thought–heartless approach of “cost efficiency” in providing care. But we all knew, even then, that the population was getting older and living longer; we knew that medicine was advancing faster than our willingness to grapple with the ethical issues that advancement raised; and we knew that, sooner or later, we would have to come up with solutions to those problems.

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