CRITICAL REVIEW
(by Ivor Balin Pannell - revised 11/97 )
BOOK SUMMARY:
Disabled My Life,... is a nonfiction, first person, autobiographical account of the life of Walter Elwood Brandon...a fifty-nine year old sickle cell defier presently living in Philadelphia, Pennsylvania.
The book tells the story of Mr. Brandon from his birth in the post Depression era city of Chicago's South Side in 1938, through his maturation process as an adolescent in the tough streets of the northern ghetto, to his adult years as a sickle cell community activist. The author writes from the unique perspective of the eldest of four children, all born with sickle cell disease, living during a period in our history when precious little was known about this chronic and often devastating genetic illness.
Although autobiographical in nature, the writing is less in narrative format as it is essay. The topics of these short compositions range from Mr. Brandon's experience of the interpersonal dynamics of the sickle cell family, to his evaluation of the progress of sickle cell medical research, to his opinion of the roles that race and racism play in the treatment and perceptions of persons with sickle cell disease, as well as the lessons regarding the day to day management of the illness he has learned over the nearly five decades of his life.
DEFIERS.COM COMMENTARY:
Granting the genuinely good intentions that we're certain Mr. Brandon wrote this book with, after careful reading and rereading we must nevertheless conclude that this piece wildly fails in its attempt to contribute anything positive to the national sickle cell community dialogue. Instead, it clearly possesses the potential to severely misinform, (and seriously endanger the physical and psychological well being of), any sickle cell defier unfortunate enough to read it. Since permission to reproduce quotes from the book , in whole or in part, was not sought from the author and owner of the copyright, we at
defiers.com are unable to document our criticisms with text. However, we shall endeavor to give you a general sense of what we found particularly objectionable about this collection of essays.
First and foremost, Mr. Brandon's book is filled with too many examples of incorrect medical and other related terminology. How can we as readers seriously consider his arguments if his writing belies a basic ignorance of all the relevant terms? He confuses pain thresholds for physiological tolerance, pre-condition pre-existing clauses with pre-existing condition clauses, cerebral thrombosis with cerebrovascular accident, drug addiction with physical dependence, as well as mistakenly proclaiming Cooley's Anemia and Thalassemia as two distinct blood disorders.
Moreover, where there is a confusion of terminology there will inevitably be a confusion of concepts as well. This is evidenced by, among others, his position that there is necessarily a causal relationship between a falling blood count and the pain experienced by defiers. If this was true, how does he explain the intense pain often experienced by sickle cell defiers whose counts don't drop one bit.
There is also the example of the author's inept command of the natural genetic history of sickle cell disease itself. This is clearly demonstrated when Mr. Brandon writes that the origins of sickle cell disease are exclusively African in nature, completely disregarding the Arab/Indian component from the genetic beginnings of this illness. In addition, his insistence that it was a sickle trait cell that was spawned by nature's spontaneous mutation as opposed to a sickle hemoglobin gene, lends even more support to our point that Mr. Brandon possesses neither an adequate command of the relevant terminology nor the corresponding concepts to write with the unabashed authority that he assumes in his book.
Further, his writing is often characterized by absurd assertions and illogical conclusions that he quotes no reference or source material to support, nor cites any empirical data to corroborate. For example, witness his pseudoscientific tirade regarding the numerous and significant side effects of the medication Demerol that have mysteriously escaped doctors, but curiously are known only to him. There is also his immutable position that eating the healthy diet he prescribes translates into fewer crises; or that leg ulcers in sickle cell disease are primarily caused by toxic waste in the blood stream, (as opposed to the blockage of the small, superficial blood vessels resulting in a significant deprivation of oxygen to the skin).
Mr. Brandon also uses his book as a platform from which to launch the most irresponsible advice conceivable for the sickle cell community. Examples are: advising defiers to stop taking their medications; encouraging us to radically change our diets without emphasizing the importance of first consulting our physicians; and even recommending the flat out rejection of standard medical advice regarding the treatment of leg ulcers in favor of his own, original home remedy.
Moreover, he glorifies certain behavioral strategies we feel could be most injurious to our community. For instance, when he endorses defiers deliberately communicating false information about their conditions to their doctors as a coping mechanism; or when he sanctions the notion that defiers should act belligerently or even crazy as a means of obtaining the medical care we deserve in an emergency room situation...because, after all, that is what medical professionals expect of us. Isn't it? Shortsighted approaches such as these will not only mean serious consequences down the line for any defier who attempts them, but it will invariably have a very negative impact upon the medical/healthcare professional community's overall perception of the entire sickle cell community. Clearly, this is too high a price to pay for such a misguided strategy.
The author also seems unusually comfortable making sweeping generalizations about sickle cell disease and sickle cell defiers on the sole basis of his individual experience with the illness alone...a particularly perilous practice indeed. To wit, his insistence that as defiers age they experience painful crises less and less, or his related conclusion that his is the very first generation of persons with this genetic disease, (1938-1995), to live fifty years. Where does this leave those sickle cell defiers who are in their sixties and seventies? Clearly their generation has up to twenty years of experience on Mr. Brandon, and yet their existence is not at all reflected in his universal pronouncement about age and sickle cell disease. Such flagrant inexactitude dramatically underscores the inherent danger in making broad statements about this illness, especially when considering the overall lack of specific and conclusive demographic data to support such determinations.
However, there are two main points that Mr. Brandon makes in his book that we at defiers.com find most objectionable.
The first is his opinion that over the last forty to fifty years the medical and healthcare communities have amassed over seventy million dollars in National Institutes of Health (NIH) grants and moneys, (a figure he does not bother to cite any source to support), for the primary and dual purpose of the research and treatment of sickle cell disease. Although precise figuires for the total NIH expanditures in the field of sickle cell disease research for the past fifty years are somewhat elusive, we at defiers.com have ascertained that federal funding for sickle cell research totaled $47 million dollars in 1995 alone, according to NIH unpublished data.
He futher writes that despite this influx of capital, there have been absolutely no significant advancements in these areas for the last four to five decades. The reason he posits for this tragedy is the selfishness of medical professionals who have exploited sickle cell disease and their positions as doctors as an opportunity to line their pockets with the money produced by the presumably prestigious research jobs these grants and funds create. According to him, there have been no tangible benefits at all for the sickle cell community after seventy million dollars and fifty years because all of this money has gone to bankroll their professions, shuffle their paperwork and advance their careers. Even the Sickle Cell Disease Association of America, Inc., the umbrella corporation for his own organization, has not been spared from Mr. Brandon's harsh indictment, as he callously reduces its entire significance to that of a mere stepping stone for ambitious and greedy professionals.
While Mr. Brandon's claim that more strides should have been made in the past half century is perhaps valid, it is quite another thing altogether to categorically dismiss all the progress that has been made where the sickle cell community is concerned. Contemporary medical advances in areas such as:
are not a few indications that, although a cure has yet been found for this disease, not only have there been strides but there have been quantum leaps made in the amount and quality of the therapies and treatments available to defiers today, as well as in the ongoing process of the collective endeavor of researchers to unlock the many physiological and psychological mysteries of this formidable genetic illness. To casually disregard all the above is to overlook the meaningful contributions of these and other great pioneers in the twin areas of sickle cell disease treatment and research, and to unnecessarily fill our community with a potentially overwhelming sense of fear, hopelessness and despair.
The other principal point, redundantly argued again and again by the author, regards his complete and absolute oversimplification of the dynamics of race and racism as they pertain to and affect individuals with sickle cell disease. Mr. Brandon theorizes that the popular practice of stigmatizing sickle cell defiers as drug addicts, because of their occasional need for narcotic analgesics to relieve their pain, engaged in by all too many health care professionals around this country and the world is a direct consequence and ugly expression of the racist attitudes of these individuals. He founds this theory on his peculiar notion that the sickle cell patients are always Black and the hospital staff is always White.
Now, we at defiers.com have no problem whatsoever with the author's contention that aspects of race and racism do indeed play a key role in how sickle cell defiers are perceived and treated in hospitals all over the world. Clearly, this is the case, and there shall be no attempt to argue the contrary from us. However, to maintain that the reason these prejudices and biased attitudes exist in the first place is that the health care professionals are always White and the defiers are always Black, is to necessarily overlook two fundamental factors in this extremely complex social equation.
Number one, how does this theory address the unfortunate but pervasive reality that frequently the most derisive keepers and purveyors of these shallow and often hateful attitudes are themselves persons of color? Is it simply racism that explains the stereotyping and the negative dispositions harbored and so vehemently expressed toward our community by these non-White members of hospital staffs? How can it when they too are subject to the cruel weapon of racial discrimination perpetrated upon them as persons also not belonging to the dominant White culture? Could this be the affect of internalized racism in these individuals? Perhaps, in part, it is. But this author maintains that if there are medical or health care professionals of color who also hold true with these prejudices and biases against our people, it is not because they truly believe in these stereotypes themselves, but rather because they have ultimately assumed the values of their White oppressors.
Number two, where does this theory reflect a consideration of and a sensitivity to the existence and experience of those rare sickle cell defiers who, as it happens, are themselves White? They too encounter and endure these unforgiving preconceptions on the part of some hospital staff members. Is this also an example of racism as expressed by the White members of hospital staffs? Given the racial make up of the particular objects of these prejudices in this case, and that as earlier stated the medical faculty and health care workers expressing these prejudgments can easily be persons of color, I think not.
Could it be, perhaps, that the leading and most profound cause of this terrible and seemingly ubiquitous parochialism in the medical/health care professions is the human failing of ignorance? Is this not a more plausible explanation of the deeper reason for the existence of this example of medical provincialism? And, does it not more adequately address the situational examples cited above that so clearly exempt themselves from the suppositional scope of the author's personal theory? What we in the sickle cell community must always remember, and what Mr. Brandon fails to realize, is that it is imperative that we recognize that it is ignorance that is the ultimate cause of these contemptuous attitudes...not racism. Ignorance to and/or about:
As long as we understand that the chief reason for the misconceptions is ignorance, the extremely effective weapon of education presents itself as a successful means of combating them. If we don't, what responsive and meaningful tactics are there that will ever truly allow the sickle cell community to surmount this seemingly insurmountable obstacle? After all, one cannot dialogue with a racist!
Finally, it is our position that perhaps one of the most potent instruments of empowerment the sickle cell community has at its disposal today is the instrument of dialogue. And it is in the healthy pursuit of spirited dialogue that this commentary is respectfully offered to Mr. Brandon and the larger sickle cell society, in furtherance of what is most assuredly our common goal to emancipate our community from the shackles of our current physiological, psychological and social circumstances through the dynamic interchange of knowledge and experiences in the international arena of ideas.
End Note:
Disabled My Life, The First Fifty Years With Sickle Cell Disease,
by Walter Elwood Brandon
is published by Vacs Book Publishers, Philadelphia, PA 19150.
The telephone number is 215-924-7185, and the fax number is 215-924-0863.
If you are interested in purchasing a copy, the cost is $10.95 plus $3.00 for shipping and handling.
Please allow four weeks for delivery.Proceeds from the sale of the book are said to benefit the Sickle Cell Disease Association,
Philadelphia/Delaware Valley Chapter.
Please make your check or money
orders payable and forward to:
Sickle Cell Disease Association
Philadelphia/Delaware Valley Chapter
4601 Market Street
Philadelphia, Pennsylvania 19139
Attention: Book
215-471-8686
In view of defiers.com's policy of fostering open dialogue in our community,
founders Deborah Oster Pannell and Ivor Balin Pannell encourage you to,
if motivated, compose and submit a written counter-commentary to our critical review
of Walter Brandon's Disabled My Life, The First Fifty Years With Sickle Cell Disease.
Please send all submissions by way of e-mail to defierx@defiers.com.
Replies will be posted. We look forward to receiving and sharing your comments
with the sickle cell community!