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Correspondence with the Chronicle
By Craig Maupin
It is spring of 2003, and
, school superintendent Paul Kadri’s
phone is buzzing. Coming across loud and clear are the voices of parents who
believe their children did not receive a fair shake in their quest to be
. As the pressure mounted,
Kadri would soon come to a decision: senior Blair Hornstine (Blair Hornstine Home Page), whose GPA was the
highest in the class, had an easier road to valedictorian than her classmates.
Kadri decided that Hornstine, who took some of her classes at home due to a
disability that appears to be
share the honor with others whom he felt had traveled a tougher road.
The Harvard-bound Hornstine had other ideas. She made a
decision of her own, one that brought the wrath of the small, upper-class
community crashing down on her.
She wouldn’t share the title. She would sue the school to have
her title reinstated — and sue for discrimination as well.
In the weeks that followed, the normally tranquil
Moorestown erupted. News-paper columns decried
Hornstine’s action. Locals blasted her for selfishness. Harvard students and
alumni circulated a petition to have her admission denied for fears that she
would ethically compromise their school. Eggs were thrown at Hornstine’s house,
obscenities spray-painted on the walls. Charges of plagiarism against Hornstine
appeared in the local paper.
Perhaps the polite thing for Hornstine to do would have been
to share her title. But while Hornstine may not have come across as charitable,
pursuant speculation about the underlying cause(s) of the public indignation
toward Hornstine was the true catalyst behind the story’s national
An Oft-Unseen Perspective
Nothing about the
furor surprised me. Unlike many of the folks in
Moorestown and Harvard, I know
CFIDS well. My career, education and personal
goals have been indefinitely put on hold because of it.
It also didn’t surprise me that the
CFIDS community failed to come to Blair’s
defense. Many of us, myself included, cannot attend school in any form due to
the physical limitations imposed on them. Stir into those particulars a lawsuit
that was widely perceived as selfish, and this controversy understandably
becomes something many with
CFIDS would just as
I think back to my own experiences with
CFIDS. I remember the day I first got the
“flu.” Like any successful, athletic teenager, I didn’t take it seriously. But
within three months tests confirmed my stomach was unable to digest food. I lost
30 pounds. My grades slipped. One spring day of my senior year, I called my
mother with tears in my eyes and said, “I cannot go on.”
I remember my father encouraging me; he said my dreams for my
life would materialize. They never have. I remember a teacher informing me that
if I did not show up in her class I would be flunked, despite a schedule that
had been worked out with the assistance of my doctor, parents and school
administrators. I remember the sadness I felt when I learned my illness’ name
would be changed from chronic Epstein-Barr to the benignly broad term chronic
While those who suffer from other chronic illnesses often
receive an outpouring of community and family support, those with
CFIDS sometimes receive an outpouring of
scrutiny and disbelief. With a trivializing name headlining the illness, many
form their impressions quickly — and even the most skillful media consultant
could do little to shift them.
A letter to the editor in the
Moorestown paper asks: “How can Hornstine even consider
herself part of the class when she doesn’t have to take physical education or
deal with the everyday rigors of high school because of her chronic fatigue
A proud Harvard Law student adds: “Disability? We probably ALL
have chronic fatigue back in good old
. Welcome to the life of every
over-stressed and under-slept student on campus.”
That’s a small taste of what makes life with
CFIDS different. Many at Harvard and in
Moorestown came to the conclusion that my illness is
somehow the “easier road” or opportunistic pretense. These statements reveal
CFIDS isn’t only a physical nightmare. It
is so much more.
A voice of reason
An opinion issued by U.S
District Court Judge Freda L. Wilson was perhaps the only piece of analysis to
rise above the fray. She delivered the most concise and sane commentary on the
episode yet: “…I want to make clear that the evidence in this case has shown
that Ms. Hornstine earned her distinction as the top student in her class in
spite of, not because of, her disability.
“[The school, parents and community]…adopted the assumption
that somehow the plaintiff’s disability and accommodations have given her an
academic advantage over other students. They have lost sight of the fact that
plaintiff, unlike her peers, suffers from a debilitating medical condition.”
What if we had removed
from whole episode in
Moorestown and replaced it with a
racial profile, a religious belief or another chronic illness? Would the furor,
the controversy and the scrutiny have been replaced with compassion,
understanding and benefit of the doubt? I can only wonder.
While a town and university community is embroiled in a
perceived defense of the universal ideals of charity, I can only feel sadness. I
cannot imagine much progress coming against the illness that struck me down
until public attitudes toward CFIDS change.
Perhaps a proposed name change will help. But maybe it will take a look below
the surface of a name, to the devastating illness that lies underneath. Above
all of the cries for sharing, caring and fairness, this is the only point I took
from the debacle in Moorestown .
Blair Hornstine’s case is a microcosm of a larger problem.
Beyond a girl’s unwillingness to share her academic honor, and a town’s zeal to
adjust the rules, is an unseen perspective. Most people missed the point in
Moorestown . But for those of us with
CFIDS , it’s simply a new twist on an old story:
The continued lack of public respect for an illness that has cost us all so
Craig Maupin can be reached by e-mail at