2.6. The medical "better dead than blind" view

Article 6 of the Nuremberg Code stipulates that

"... the degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment".

The risk of death clearly exceeds the importance of avoiding blindness as the whole exceeds the part.

Physicians killing and maiming patients to maybe save their sight is even more absurd than Inquisitioners killing and torturing heretics to maybe save their souls. The soul, at least, was deemed an essential part of a person. Sight is not.

Few if any non-suicidal blind or sighted people, including physicians, would probably want to risk their own life just to gain or maintain sight.  Many blind people say blindness is not a major handicap but only an inconvenience; it certainly does not prevent them from leading independent lives as satisfying and productive as those of their sighted counterparts^{60, 61}.

The National Hero of Bohemia, Jan Zizka, a statesman and general whose innovative tactics and strategies saved his country six centuries ago from much superior forces, was blind in both eyes⁶².  And there is at least one case of a boy totally blinded in childhood who became a successful physician and wrote a useful book about the special obstacles he encountered, describing the solutions that helped him and that may now help others⁶³63.

Blind people count among them artists and athletes and barbers and engineers and entrepreneurs and fathers and mothers and whatevers.  With only minor exceptions, such as driving, they fill about as many roles as sighted people do. And each of them is a person and thus entitled to respect, no less than you or I.

But many physicians deny blind people this basic respect and demonize blindness. Bad images can hurt good people, as the Nazi's depiction of Jews as vermin to be exterminated has amply demonstrated⁶⁴, and as many other victims of discrimination against stereotypes can also testify.

This is why organizations such as the National Federation of the Blind have long been campaigning against damaging images of blindness. Typically, when they alert offending individuals that their portrayals of blind persons are negative and harmful, those responsible usually soon recognize their error, apologize, and withdraw the offending statement.

However, some physicians are not that civilized.  Marc Maurer, President of the National Federation of the Blind, is a lawyer blind from ROP who was born just in time before the oxygen withholding doctrine would otherwise have suffocated him.  He has for many years exposed the unscientific and irresponsible behavior of physicians who falsely portray blindness as a hindrance to thinking and as leading to demented behavior^{65, 66}.

Yet, some disease- mongering⁶⁷ medical organizations continue to promote and exploit the myth that life without sight is without value. At the time of the oxygen throttling trial, this myth begot the idea that blindness would be worse for preemies than brain damage or death and so led to the mass infanticide; the same myth still sanctions today's lethal oxygen curtailment.

Shortly before the 1953/54 oxygen withholding trial, the Associate Director of the New York State Department of Health's Division of Medical Services expressed the then prevailing medical perception of blindness. He justified his and his colleagues' pessimism about the futility of "salvaging" babies below 1500 grams on the grounds that 5.6% among them would have gross visual defects due to retrolental fibroplasia and some others would suffer from cerebral palsy.  Here are his words:

"An even more pessimistic attitude toward the premature infant prevailed fifteen or twenty years ago when only a few leaders in the medical profession insisted that the great majority of premature infants could be saved and become as useful citizens as full-term infants, provided they suffered no injury during birth. A residue of the fatalistic attitude persists, perhaps justifiably to some extent, with respect to the premature infant whose birth weight is about or below 1,500 Gm. The finding of an incidence rate of 5.6 per cent of gross visual defect due to retrolental fibroplasia in premature infants weighing less than 1,500 Gm, coupled with the higher incidence of cerebral palsy in this group, lends weight to this feeling."⁶⁸

This Director of Medical Services did not voice any concerns about the even higher probability of mental retardation and severe brain damage which make the medical efforts for preemies at the limits of viability often futile indeed, but his message was: better twenty dead than some in wheelchairs and one blind.

Today, examples of this same damaging attitude abound, for instance, in the fundraising magazine of the Schepens Eye Research Institute, an Affiliate of Harvard Medical School.  Several articles in its Spring 1993 issue, including one by that Institute's much celebrated founder, suggest that without visual function a person has no autonomy, that early loss of sight may impair all aspects of physical and mental development, and that more eye research will reward society with healthy, independent, contributing individuals -- as if blind people were excluded from that description.  The following are extracts from that issue:

 "... innovative surgical techniques developed here allow children with ROP to retain some visual function, and therefore autonomy, rather than facing total blindness." "The rewards for society [from support of eye research] are healthy, independent, contributing individuals." (On page 1, signed by Dr. Schepens) On page 2: "blinding eye diseases are [...] doubly tragic when they strike the very young, since early loss of sight may impair all aspects of physical and mental development." "Development of vision is inextricably tied to improvement in motor skills, as the child learns to use vision to orient himself in space, affecting balance, posture, and movement." "Impaired vision can also slow mental, social, and psychological development." Page 4: "What they gain is some sight: the ability to detect light and shadow, general shape, and especially movement. In many cases, it is enough to enable them to move about the house or cross the street safely."⁶⁹

Even Dr. Silverman, one of the very few physicians who cared about the later fate of ROP victims and who has long raised critical questions about the consequences of oxygen withholding -- even he conveys the message to exclude blind people from those who should live. He offered repeatedly an anecdote about a man blind from ROP who visited an intensive care nursery "to 'see' the babies":

"... the nurse turned to him and asked, 'I wonder if you feel we are right trying to keep all these small babies alive knowing that some of them may be blind?' The young man struggled with the question, burst into tears and said, 'No. I don't think you should do it.' This was a very emotional moment that had quite an impact on me."^{70, 71}

The emotions such anecdotes may stir up have an even greater impact on the life and death of preemies when medical experts yield to them and decree that blindness is a worse problem for blind people than most blind people think it is.

Physicians should have no right to decide that some people's risk of blindness makes them unworthy of life.  Yet, in intensive care nurseries all over America and in many other countries, otherwise humane physicians still make this decision daily, each time they restrict a preemie's oxygen supply.

Continue reading