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Editor's Notes |
Hidden in this issue—in an article and commentary about the relationships among impairments, functional limitations, and disability—is the basis for a revolution.
It's a revolution that could change the face of physical therapy, rehabilitation in general, and large segments of health care. Admittedly, this is my view, and not necessarily that of the authors; but it is their words that have led me to look beyond the substantial science of their writings to the social significance.
Health care too often focuses on the remediation of pathologies—a noble and reasonable goal, but one that can be taken to extremes. As we unravel the human genome it becomes clear that, regardless of whether we manifest diseases or simply carry the propensity for the development of pathologies, we are quite similar at the genetic level. It is small variations in one or more genes that are responsible for many pathologies and diseases and for the physical characteristics that help make us who we are and allow us to be different from one another.
"Normal" is a word that has outlived its usefulness, because it presumes a standard that is unobtainable—or nonexistent. At best we can discuss whether we have found evidence of pathology, impairments, functional limitations, or disability. This is not an issue of political correctness, but a recognition that with every passing day we can more completely define the biological state of one another, and small genetic variations are the rule, not the exception. Ironically, we might yet find that the obvious traits that have been used to separate people, such as race and ethnicity, may be the result of very few differences at the genetic level. The real issue is what differences we consider to be important.
Ethicists and others now discuss the meaning of those differences and the frightening possibility that, even before disease becomes manifest, society will classify people based on whether there is a probability, or even a possibility, of diseases arising later in life. Orwell's Big Brother did not arrive in 1984, but a more frightening version of Big Brother—wearing bureaucrats' clothing and assisted by white-coated scientists—seems like a possibility for 2004. This was the premise of the haunting movie Gattaca. If we choose to make decisions based on genetics and choose to seek and destroy every genetic anomaly, whether it is causing a problem or not, we will give final victory to the Nazi belief system that we thought we had destroyed on the battlefield. We also will give legitimacy to the discredited proponents of eugenics who, in this country, pioneered the use of forced sterilization and helped develop the philosophy that was taken to extremes by the Nazis and that was expressed most recently by those engaged in "ethnic cleansing."
These dire possibilities may seem distant from the research article by Hermann and Reese and the commentary by Jette that appear this month in our Journal. The article reminds us, however, that the belief that impairments are always linked to meaningful disabilities should be questioned and that opinions should not suffice. In his commentary, Jette renews his plea for physical therapists to examine the relationships between impairments and disabilities and to consider both the complexity of the relationships and the role of pain in those relationships. Together the article and the commentary remind us that the issue is not the disease but the person who is deprived of abilities and whose quality of life is threatened.
Hermann and Reese remind us that we eventually need to determine the best level for our interventions. The authors did more than that, however, and the message should not be missed. Without even mentioning it, and without summoning up the images I am using here, the authors ask us to focus on the humanity of health care, reminding us not to be fixated on what health care workers see as important, but rather to respect what the patient values. We do our jobs when we put patients first and consider what patients find to be most critical in their lives. That is not to suggest that we should ignore social issues and other responsibilities. We need to keep power out of the hands of people who would redefine health care and health care needs based solely on economics or based on hubris or bigotry.
Profound ethical issues will have to be addressed as scientists continue to unravel the genome and find out how to manipulate our genes. The possibility of eradicating diseases that have been long recognized as having a genetic origin should excite us all. Diminishing the possibility of developing fatal or disabling diseases seems like part of a bright new tomorrow, but what about making sure that all humans are born with the muscles and joints of Olympians? What kind of society would such people inhabit? This kind of genetic mischief could occur only with the cooperation of health care workers and a society that worships quick fixes.
Articles such as the one appearing in this month's Journal should make us remember the special place that physical therapists have held in society. Historically, we have been allies of those whom a bigoted society would ignore or mistreat—those with disabilities who would otherwise be masters of their own fate. The authors remind us of one central and essential premise: The patient's needs, not our own, should dictate what we do. As our profession grew and we focused on attaining credibility, did we too often ally ourselves with those who ignored this premise? In our zeal for expanding our services to athletes and others, have we forgotten that we must be especially vocal about and committed to those who are least likely to be served by society?
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