MY POSTER CHILDHOOD
IN THE '70S, LITTLE TAMMY GRAVENHORST APPEALED TO YOUR EMOTIONS. TODAY, AS A
SCHOLAR OF LITERATURE AND DISABILITY, SHE'S MORE INTERESTED IN YOUR BRAIN
By Carolyn Alessio. Carolyn Alessio is the Tribune's deputy literary editor.
February 13, 2000
Tammy Gravenhorst was frightened the first time she saw herself on
television. The appearance, in a public service announcement, was nothing
unusual for 4-year-old Tammy in 1974, the year she served as poster child
for United Cerebral Palsy of Greater Chicago. But she rarely watched
television, so when she glanced at the screen in her parents' Wheeling
apartment, she was startled by the image.
"My dad had to convince me I wasn't inside the TV but sitting on the couch
next to him," she said.
Gravenhorst, now 30, wryly refers to her yearlong campaign as "my poster
childhood." The stint included a 21-hour telethon, thousands of photo
sessions and visits with celebrities and city officials such as Mayor
Richard J. Daley, Shari Lewis and the Blackhawks' Keith Magnuson and Tony
Esposito. Many of the photos from that time show Gravenhorst wearing gingham
dresses and leaning into her small crutches. In others, she sits on famous
people's laps, looking calm but quizzical.
Gravenhorst recalls that chapter in her life with deep ambivalence. But she
also recognizes how this prominence has helped shape the academic career she
has pursued as an adult. A doctoral student at Indiana University at
Bloomington, Gravenhorst has become a spokeswoman for support of the
disabled in higher education through her service in the Modern Language
Association's pioneer Committee on Disability Issues in the Profession.
Gravenhorst is a French literature scholar but a unique one. Her studies
focus on how a culture and its art and literature define what is normal and
where the disabled fit into that scheme. She is at the crest of a growing
wave of scholarship that questions such persistent assumptions as the notion
that the disabled should strive to be more "normal" or to focus on some
seemingly elusive cures for their conditions. Instead of viewing disability
as an abnormality or strictly a medical condition, these scholars consider
it a classification like race or sex.
Though Gravenhorst focuses on French literature, many of her projects
dovetail with those of disabilities studies, a relatively new academic area
that re-examines long-held ideas about disability and draws on a variety of
disciplines such as sociology and history. The University of Illinois at
Chicago recently instituted the first PhD program in disability studies.
Disability scholars also examine current trends. They note that, just as
Gravenhorst was a local icon 26 years ago, actor Christopher Reeve has
become a media icon of disability. Gravenhorst and other scholars express
some unease about Reeve, who has been paralyzed since a fall from a horse in
1995. His focus on his dream to walk again, they suggest, may unwittingly
keep others from accepting their disability as part of their identity.
"Christopher Reeve has made himself a poster child," said Rosemarie
Garland-Thomson, an associate professor of English at Howard University, who
is working on a scholarly study of poster children.
"He says things like, `We really ought to think about insurance or making
disabled people's lives better, because not everyone is as rich as I am,'
but he also says he's going to be walking in a year. That's the quote pulled
out by the media because we as a culture love the cure."
When Tammy Gravenhorst was born at Highland Park Hospital in May 1969, she
was three months premature and weighed just 3 pounds, 10 ounces.
"Her doctor told her father and me that if she were a racehorse, he wouldn't
bet on her," recalled Tammy's mother, Sally Gravenhorst, who now lives near
Orlando. (She and Tammy's father, Mark, divorced in the early '90s.)
Sally, who was only 16 at the time of Tammy's birth, and Mark, then 21,
spent the next 30 days waiting to hold their daughter, who had been placed
in an incubator.
Two years later, when Tammy still wasn't crawling--she rolled instead--her
pediatrician suggested that the Gravenhorsts seek an evaluation at
Children's Memorial Hospital. There Tammy was diagnosed with cerebral palsy,
a group of chronic conditions that impair body movement and muscle
coordination. Oxygen deprivation in the brain can lead to cerebral palsy, so
premature birth and low birth weight are documented risk factors. Cerebral
palsy affects about 500,000 children and adults in the U.S.
Tammy's cerebral palsy primarily involves her legs. Before she was 16, she
underwent 11 orthopedic surgeries, including the transfer of a muscle from
her stomach to her hip so she wouldn't dislocate the hip, and a fusion of
the bones in her feet so she wouldn't have to wear leg braces.
Her early operations were performed one leg at a time, and Tammy spent much
of her third summer in a 60-pound cast that extended from below her
breastline to her toes. The Gravenhorsts' nearly bare third-floor apartment
didn't have air conditioning, so Sally frequently hefted her daughter in the
cast down three flights of stairs and settled her in a wagon with pillows.
They toured the neighborhood this way. "I wanted to get her into the
sunshine," Sally said.
But in a sign of the times, one onlooker mistook Tammy's postoperative casts
for evidence of child abuse and called the police.
Sally chokes up when she remembers the incident. The police arrived at her
door, she said, and they all had to wait for Tammy's doctor to call back and
confirm that he had performed surgery on her.
Tammy also remembers her surgeries with uneasiness, but not for the same
reasons that caused her mother's. If Tammy could turn back the clock on her
childhood, she's not so sure she would undergo every operation. Though the
extensive procedures enabled her to walk with crutches, she has questions
about altering or fixing a body that doesn't function like others.
"A lot of (disabled) people undergo this implicit normalization that is
ethically dubious," she said. "I'm covered with scars from my surgeries." By
focusing on the operations, Gravenhorst says, the person becomes
"medicalized"--a body to be fixed, not a person with an identity. Ideally,
she believes that a patient and his or her family should consider all
options carefully, without bending to social pressure.
"Parents who have a disabled child should consult more than the medical
community to find out what's out there," she said, "like independent living
organizations and homeopathy, even other adults in the community to act as
mentors."
Gravenhorst's areas of interest are in keeping with a current academic
trend. In recent years, scholars have increasingly turned their attention
from abstract questions to more material subjects such as the physical body.
Recently, at a Chicago meeting of the Modern Language Association, an
academic organization with 30,000 members, Gravenhorst chaired a panel
titled "Curious Cases: The Patient as Literature." Scholars debated topics
ranging from doctor-patient relationships to the medieval ideas of
pilgrimages and cures.
In Gravenhorst's own work, she challenges conventional ways of looking at
literature. Examining "Madame Bovary," for example, she writes about a
character who is often overlooked in the famous French novel: the clubfooted
stableboy. When his "corrective" surgery is bungled, the stableboy undergoes
an amputation and vanishes from the town's consciousness. In this way,
Gravenhorst writes, he comes to represent "all that is unspeakable."
Articulate from an early age, Gravenhorst seemed fated for a life in
academia. At age 3 1/2, she began at the Berkley School in Arlington
Heights, partly in response to a state mandate for the education of
handicapped children. The school offered a special-education program that
included physical therapy.
Intellectually, Tammy was more than ready, according to her mother. "When
she was between 2 and 3, she was using two words that stopped me:
`coincidence' and `occasionally.' In context," her mother said. Tammy fondly
recalls her first education experience--she remembers playing on the
school's tailored equipment. She also credits her seven years in special
education with fostering her love of teaching--when the teachers were
occupied with other students, Tammy learned to assist her classmates in
areas such as phonics and reading.
Through her first school, Tammy's parents learned about a Chicago-area
summer camp run by the United Cerebral Palsy Foundation. It was at the camp
that organization officials spotted Tammy for her charm and intelligence
and, quite likely, the fact that she was not extremely disabled.
1974 was a yearlong photo session for Tammy. In addition to posing with
celebrities, she made frequent appearances at fundraisers. Though the
position brought some bonuses, including an entourage of guardian clowns to
entertain Tammy, the regimen was also rigorous, especially when combined
with daily therapy. (One of her daily exercises required five people to move
her limbs and head in a coordinated pattern. Tammy also used parallel bars
in her living room.)
In the spotlight, she charmed many and donations to United Cerebral Palsy of
Greater Chicago increased. Tammy's parents generally declined gifts offered
to their daughter. For Christmas that year, Tammy said she wanted a rocking
horse, but her parents said that first she had to accomplish a goal. "We'd
made a deal with Tammy that she could have one when she took 10 steps
(without crutches)," her mother said.
Though this might sound harsh to some, Tammy said she didn't mind the
discipline, which hasn't harmed her academic career. But now, looking back,
she wonders about the motivation of the physical therapists who were "gonna
make me walk."
She eventually did take 10 unassisted steps, though it wouldn't be for
another six years. By then, she no longer desired a rocking horse, and her
parents bought her a stereo instead.
But once, she took far more than 10 steps--at least the way it looked on TV.
The year she turned 11, a local television station in Colorado profiled her
as part of a week devoted to "exceptional children." Tammy took some steps
for the camera crew in the back yard, falling several times during the
taping--as was the norm. But when the segment aired, the falls had been
eliminated and the tape spliced together. "They showed me trucking across
the yard," she said.
Wittingly or not, the television crew had transformed Gravenhorst into what
she describes as part of the "pervasive idea of the crippled hero."
According to Gravenhorst and many disability scholars, non-disabled people
sometimes endow the disabled not only with the possibility of conquering
their condition, but also with a superhuman courage.
"We need to believe that everybody is Tiny Tim," she said. "I suppose it's a
healthy impulse but it's reductive and unfair to people with disabilities
who want to claim a voice that's different from that."
But the crippled hero has gradually evolved into a different, more
sophisticated image. On March 11, United Cerebral Palsy of Greater Chicago
will air a radically revamped telethon on ABC--a taped, one-hour program
that will feature interviews with disabled children and adults at the
organization's five local centers, according to spokeswoman Bridget
Schienle.
Other prominent organizations have adapted similar approaches to advertising
and appeals. The March of Dimes, founded in 1938, developed the idea of
poster children as part of a campaign to conquer polio. The organization now
sponsors research and programs to promote babies' health, and calls its
young spokespeople "youth ambassadors."
"In the past, poster children were in wheelchairs or on crutches to make an
emotional appeal," said Edward Schultz, spokesman for the March of Dimes'
Greater Illinois Chapter. "Now we have healthy children to put forth a more
positive outlook."
March of Dimes ran its last telethon in 1984. Similarly, Easter Seals, which
offers services and support to children and adults with disabilities, has
abandoned its telethon after a quarter-century, partly in response to rising
television costs. But the organization's focus has changed as well,
according to Sara Brewster, vice president of marketing communications at
the national headquarters in Chicago.
"The whole point is to choose people who can tell their own stories,"
Brewster said. "Pathetic (representatives) don't work anymore--our research
shows the younger donors want to know the money they're giving is going to
help someone become independent."
The Muscular Dystrophy Association still runs its annual Jerry Lewis Labor
Day telethon, which lasts 21 1/2 hours, but the organization now refers to
its poster children as "goodwill ambassadors." MDA's new emphasis, according
to spokesman Jerry Brown, is on "articulate spokespeople" who can give
"firsthand testimony."
Despite her reservations about the exploitation of poster children,
Gravenhorst considers her high-profile year a positive experience. "At 4 I
learned to speak for myself," she said.
She's still speaking for herself, to increasingly larger and varied
audiences. She advocates better physical accommodations on university
campuses as well as intellectual and legislative support for the disabled.
She worries that the disabled are encouraged to seek functional or
vocational careers.
As evidence, she points to a 1999 study by the U.S. Department of Education,
which shows that students with disabilities are less likely to stay in
post-high school education programs than equally qualified, non-disabled
students.
"I'm trying to figure out why (they're) not finishing school," Gravenhorst
said. "There's a climate that the disabled should go into functional
careers--they don't have the academic freedom because they don't have the
physical freedom."
Gravenhorst rarely hesitates to act on her concerns. As an undergraduate at
Colorado College in Colorado Springs, she and a classmate founded a group
called the Differently Abled Awareness Coalition (DAAC). In 1990, the
organization sponsored a week on campus during which students adopted a
"disability of their choice" for a day. DAAC, which still exists, was
responsible for prompting the college to offer its first course in sign
language.
Recently, Gravenhorst has pursued similar concerns as the first graduate
student to serve on the MLA's Committee on Disability Issues in the
Profession. The other members are professors, but Gravenhorst isn't
intimidated. At a recent meeting, she called the committee's attention to
the fact that higher education for the disabled isn't properly addressed in
two recent laws--the 1990 Americans with Disabilities Act and the 1997
Individuals With Disabilities Education Act.
Michael Berube, a committee member and director of the program for research
in the humanities at the University of Illinois at Urbana-Champaign, said he
was struck by Gravenhorst's originality and conviction.
"Tammy made this extended argument . . . that was not only a great argument
by itself, but also changed the committee's discussion of conference
planning to a discussion of the intellectual and moral issues engaged by
disability laws in general," he recalled.
Dissent and debate, Gravenhorst believes, are important for any organization
because they imply thought rather than wholesale conclusions or
brainwashing. "I don't care what people think as long as they're really
thinking," she often says.
The ability to consider opposing ideas comes, in part, from Gravenhorst's
own struggle with her wishes to be normal and to excel.
"I was raised to be a hero," she said. "(There was) nothing I couldn't do.
That's the reason a lot of disabled people get hooked into stereotypes--it's
the American Dream."
In one sense, she believes that her determination to overcome adversity
prepared her to travel and live in other countries. She became interested in
French when she went to France with a high school class. Later, after
college, where she majored in French and Italian, she returned to France and
taught there for a total of two years.
Gravenhorst now lives outside Bloomington with her boyfriend, Viktor
Berberi, a graduate student in Italian, and their dogs, Chopper and Leili.
When they're not teaching or working on their dissertations, the couple
likes to cook Italian dishes and rent foreign films. Gravenhorst also
volunteers on the crisis line for a local women's shelter. She commutes to
and from Bloomington in her car, which is outfitted with hand controls.
Though she has gained experience and confidence from her travels and work,
she has suffered from the self-imposed pressure of trying to appear
ultra-normal or capable.
Wanting to fit in has sometimes interfered with her scholarship. As an
undergraduate, she received the rare mark of A-plus from a professor on a
project in French literary theory. When Gravenhorst read the professor's
comments, she panicked and thought she was being rewarded for something she
didn't deserve. She also worried that the unusual grade might make her stand
out among her classmates. Rushing into the professor's office, she said,
"Don't you dare give me an A-plus."
The professor said, "Why are you so afraid to excel?"
Gravenhorst credits this moment as one of the most pivotal of her life and
career. "I think I cried for an hour sitting in her office," she said, "and
I don't think I ever found an answer."
Howard University's Garland-Thomson said, "When you have a disability and
you do well, people look at it as overcompensation. If you don't have a
disability and you do well, then you're smart."
The biggest obstacle in Gravenhorst's life, she said, has not been physical,
but emotional. In 1994, her younger brother, Trevor, was killed in a car
accident at age 18.
"It was the hardest thing any of us has ever done," she said of her family's
coping with the death of her only sibling. When Trevor died, she said, she
realized that "life was not going to be perfect." She began to question her
choices and motivations. "If I was going to excel," she said, "it would have
to be a matter of passion and interest instead of just bouncing a ball on my
nose."
Given this experience, she feels uneasy when people applaud her--both
literally and figuratively--on the courage they assume comes with her
disability, rather than looking for other strengths. People are often ready
to help her up the stairs, she said, but not always to connect emotionally.
In public, strangers still panic or make exaggerated gestures to assist her
when she falls.
The best experience Gravenhorst ever had with a public incident was during
the early '90s, when she was working on her master's degree at the
University of North Carolina at Chapel Hill. One day when it was raining,
she fell several times on her way to the bookstore. When she got inside, she
lay on the floor for a moment to collect herself.
An anxious crowd formed around her, clamoring to help her stand up, to
assist her in ways that she later said made her feel like an infant. But
from the cacophony of urgent, worried voices came a calmer one that uttered
something so matter-of-fact and reassuring that Gravenhorst will never
forget it: "This woman said, `I bet you could really use a cup of coffee.' "
-----Original Message-----
From: Magenta Raine <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Friday, February 18, 2000 9:03 PM
Subject: Re: Get to gether
>once, when i was ten, my family drove from calif to ny. in ohio there was
a
>place where we had the best "hand spanked" (mashed) potatoes we ever ate.
>i can still sort of visualize the place.
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