By Timothy Shriver
Monday, December 25, 2006; Page A29
I believe in the principle of last-first: The last thing you think will
be valuable is likely to be the first and most important. This
Christmas, the lesson came to me in a particularly powerful story: the
scandal of Misty Cargill.
Driving home from Christmas shopping, I couldn’t believe what I heard
on NPR. Misty Cargill is a woman with a mild intellectual disability
living in a group home in Oklahoma. She and her boyfriend go to movies
regularly and play in a weekly bowling league with friends. She works
full time at a nearby factory. Her life is normal in almost every
respect except one: Misty Cargill needs a kidney transplant.
I’m no expert on the gut-wrenching ethics of transplant decisions, nor
am I a doctor. But when I heard that Cargill was told that she was not a
candidate for transplant because of her lack of mental competence, I was
outraged. The University of Oklahoma Medical Center decision makers
claimed that she was unable to give informed consent and turned her
away.
They did this despite her own physician saying that she is perfectly
competent. The hospital then suggested she get a medical guardian, but
state officials refused to play the role, because they rightfully
determined that she was already fully competent. Most recently, the
hospital has offered to conduct its own assessment of her competence,
and that’s due next month.
I suppose we shouldn’t be surprised. In one survey quoted by reporter
Joseph Shapiro, 60 percent of transplant centers reported that they’d
have serious concerns about giving a kidney to someone with mild to
moderate intellectual disability apparently based on fears that these
patients can’t handle the complex post-transplant care. The facts are
exactly the opposite: People with intellectual disabilities who have
been lucky enough to get a transplant do as well if not better than
non-disabled people, probably because of their fidelity to instructions
and their network of caregivers and supporters.
Lurking below the surface is the more likely reason for denial: Someone
determines that people with intellectual disabilities are inferior,
human beings of lesser value, the last priority. They’re put last in
line because they’re thought not to matter quite as much as other
people. For Misty Cargill, like another vulnerable person who is being
celebrated today all over the world, there is no bed available. And for
Cargill, being turned away may well cost her life.
But the transplant physicians’ attitude is common. According to a
Special Olympics Gallup survey in 2003, a strikingly similar number of
Americans, 62 percent, don’t even want a child with intellectual
disabilities in their child’s school. In studies of health care
providers, Special Olympics has found rampant negligence in the care of
people with intellectual disabilities. Some doctors even report that
they don’t want people with intellectual disabilities sitting in their
waiting rooms. One confided that when care is given, it’s usually “quick
and dirty.”
All of which brings us to the real question that Christmas invites: Who
matters? A child in a malaria-infested zone? A transplant surgeon? Misty
Cargill?
During this season when we’re confronted with the world’s injustices,
we’re challenged to muster the willpower to make a difference for those
who suffer from inequalities.
But what about when the problem is not an absence of willpower but the
presence of won’t power? What about when we are the innkeepers —
confronted by too little space and finding ourselves uttering the
terrifying words to those who we decide matter less: “There is no room
for you.” What about when we ourselves construct the edifice on which
the shocking and outrageous devaluing of human dignity rests?
We search for a way out. The Americans With Disabilities Act forbids
such discrimination by public entities such as the hospital that turned
Misty down, does it not? The recently adopted United Nations Convention
on the Rights of Persons with Disabilities forbids such discrimination,
does it not? Medical ethics would disallow such behavior, would it not?
Political leaders committed to protecting human life will act, will they
not?
Maybe. But on Christmas, we might remember that no matter how many
restrictions and rules we create, the enigma of humanity remains our
inability to follow the mystery of love all the way to its awe-filled
conclusion: Every human life matters. There are no exceptions. There is
no hierarchy. The presence of the divine can be seen in the tiniest and
most vulnerable just as it can be seen in the strong and powerful.
But it can be seen especially among those who are demeaned, reduced to
a stable, having no room at the inn.
The most celebrated character in literature with a disability, Tiny
Tim, famously proclaimed, “God bless you, one and all.” He was an agent
of change — the cause of poor Scrooge’s transformation from misery to
joy.
Perhaps Misty Cargill is today’s protagonist of change inviting us to a
deep and terrifying view of the world we have created. She is the
embodiment of the last-first principle: She may be last on the
transplant list, but she may be first in her power to invite a
rethinking.
I pray that she will inspire us to feel differently about human life,
both hers and our own.
The writer is chairman of the Special Olympics.
Michael Steinbruck, M.A.
Project Manager, Self-Directed Supports Training and TA
Program Administrator
The Elizabeth M. Boggs Center on Developmental Disabilities – UCEDD
UMDNJ-Robert Wood Johnson Medical School
Department of Pediatrics
P.O. Box 2688
335 George Street, Suite 3500
New Brunswick, N.J. 08903-2688
Phone: 732-235-9308
FAX: 732-235-9330
Web Page: http://rwjms.umdnj.edu/boggscenter