Biomedical Engineering Reference
In-Depth Information
to him: “Super geneticist Ben Lambert has finished his search of a life-
time. Genetic engineering techniques and years of patience have finally
led him to discover the gene that has ruled his own existence, for Ben,
thirty-eight and a researcher at one of the world's leading genetics labo-
ratories, is ...a dwarf. Little in body but big in spirit.” 12
It is clearly awkward at best to contemplate Ben's condition from
the perspective of medicine, with its traditional emphasis on restoring
body functions and organic processes lost or compromised by illness or
injury. In the first place, though severely compromised by being a dwarf,
he isn't sick in any conventional sense operative in this tradition. Even
while shunned in multiple ways by other people, he is also a genius—
and in this respect, he enjoys a privileged place and the admiration of
other people and colleagues, especially among those in restorative med-
icine. 13 Despite that, as a dwarf he is beyond the limits of restorative
medicine, outside its purview, unless he is sick in a conventional sense
(flu, pneumonia, cancer, and so on). If the dwarf is outside the conven-
tional and the customary, and if clinical, restorative medicine can do
nothing for his condition as a dwarf, what exactly is he in conventional
terms?
As he knows intimately, being outside the usual and the routine means
that he is phenotypically ab normal—despite his condition having
resulted from the tyranny of chance of disfiguring achondroplasia
(though of course, we are all configured, if not abnormal and disfigured,
by chance's tyranny). He may be “hideous and deformed, a freak of
nature...a shrunken monster,” but he is neither “sick” nor “injured.”
In this sense, geeks and freaks, dwarfs and hybrids, and other genetically
or congenitally disabled individuals are socially constructed by pheno-
typic normals as beyond repair, and thus fit mainly for carnivals and
backstreet sideshows. Medicine's restorative approach to illness and
injury cannot bring such freaks and hybrids back even approximately to
accepted social norms. A dwarf may be puckish, an imp, or a good
fellow, while another may be a rogue and a cad, but all of them are
beyond the social limits due to the tyranny of chance of their births and
how the others construe that. 14
As I noted, Ben can be restoratively treated: if he gets the flu, renal
disease, cancer, or any of the many illnesses that can afflict any human
being, for the most part just like any of us normals. But when he is not
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