Disability and Chronic Illness in Children's Literature
S. Chris Saad, MEd
University of Pennsylvania
Graduate School of Education
Program in Human Sexuality Education
The author gratefully acknowledges Andrew Behrendt, Kenneth George,
and Margaret Mills for their comments on earlier drafts of this manu-
script.
Address correspondence to S. Chris Saad, University of Pennsylvania,
Graduate School of Education, Program in Human Sexuality Education,
37th and Walnut Streets, Philadelphia, PA 19104-6216. Phone: (215) 790-
0722.
E-mail: [log in to unmask] and Chronic Illness in Children's
Literature
Abstract
Children's books with disabled characters are sought out by
children with illnesses and their parents and are recommended to such
children by professionals. Books with disabled characters are also widely
read by able-bodied children. While ill and disabled characters exist in
many books for children and adolescents, these characters are often
negatively portrayed. It is imperative that children's books depicting
disabled individuals in a positive and realistic light are written and
published.
Because children's literature provides many youngsters with their
only opportunity to become acquainted with certain populations (Drenn-
on, 1993), teachers intentionally use children's books to introduce their
students to particular groups of people (MacDonald, 1993; Wagoner, 1984)
or to certain ideas (Bawden, 1980). Literature lends itself to teaching
about sensitive topics for many reasons: fictional stories are interesting,
youngsters sometimes find it easier to talk about literature than to talk
about their own lives, literature provides a springboard for discussion
of emotions (Goldman, 1993/1994), and literature can not only teach facts
but also influence affect (Bower, 1980; Monson & Shurtleff, 1979).
Teachers may therefore prepare their able-bodied students for the
mainstreaming of chronically ill children by introducing them to chroni-
cally ill characters in books, but to be effective, the books used must
be chosen with care (Dobo, 1982; Monson & Shurtleff, 1979).
Teachers who use fiction in order to educate youngsters about
chronic illnesses may unwittingly lead students to develop prejudice
against chronically ill persons if they use books in which such individu-
als are negatively portrayed. Teachers may depend on the books they
read to educate not only their students but themselves. As the result of
misinformation, teachers may overprotect, neglect, or transmit negative
attitudes to children who have chronic illnesses (Fine & Asch, 1981). One
study revealed that over 10% of parents of chronically ill youngsters
believed their children's teachers did not understand the child's needs
or were misinformed about the nature of the illness (Lynch et al., 1993).
Other professionals also use books with chronically ill characters.
Bibliotherapists may use books with chronically ill clients (Walker &
Jones, 1986), and 69% of the physicians surveyed by Drennon (1993)
recommended books about chronic illness to chronically ill youngsters.
Chronically ill children and their parents might seek out such
books themselves, as seeking information about one's medical condition is
a common way of coping with illness (Moos & Tsu, 1977). Reading may be
a way for chronically ill children to reflect on their illnesses (Coles,
1989). Books can help shape the way children interpret their illnesses.
Literature can show chronically ill persons that they are not alone and
that others have had similar problems and feelings (Walker & Jones,
1986). Books with negative or stereotypical portrayals of chronically ill
children, therefore, may be harmful to this population (Baskin & Harris,
1977).
Definitions
Several definitions have been formulated for the term "chronic
illness." Because there are so many different definitions, estimates as
to how many people have chronic illnesses vary greatly. Calculations of
the number of chronically ill persons in the United States range from
31.5 million persons (Hafstrom & Schram, 1984; Stuifbergen, 1987) to 110
million persons (White, Richter, & Fry, 1992).
Mattsson (1972) defines the term chronic illness as "a disorder
with a protracted course which can be progressive and fatal, or associ-
ated with a relatively normal life span" (p. 801). I adapted this defini-
tion for use in the present paper. I define chronic illness as a pro-
tracted (lasting for at least one year), physical disorder which is
progressive or changeable. I use the term disability to refer to condi-
tions which last at least a year but which are neither progressive nor
changeable. Thus, spinal cord injury is a disability; multiple sclerosis is
a chronic illness.
Traditionally, people with chronic illnesses were referred to as
"victims" or "patients." More recently, political activists in the HIV and
disability rights movements have rejected this terminology as it implies
helplessness and passivity. Some AIDS activists promote the use of terms
such as PWAs (persons with AIDS) on the premise that they confer
dignity; others prefer the use of the term "AIDS victims" because
"PWAs" obfuscates the reality that having AIDS is, in fact, a victimizing
experience (Hillyer, 1993). I avoid the terms "patient" and "victim"
because I believe such language is patronizing and implies that the
person with the illness is powerless.
The term "handicapped" has come to be considered offensive. An
illness or a disability does not have to be a handicap unless society
makes it one. For example, there is nothing intrinsically handicapping
about having deformed hands, but when the person with deformed hands
cannot grasp a round doorknob to open a door, the deformed hands
become a handicap (Porter, 1994).
In recent years feminists have rejected descriptive terms such as
"chronic illness" in favor of euphemisms such as "physically challeng-
ed," "physically different," and "differently abled" (Hillyer, 1993). Many
disability activists oppose such euphemisms on the grounds that their
use indicates denial of the chronically ill person's true condition (Mairs,
1987). The use of euphemisms implies that the truth is shameful and
must therefore be hidden. The term "physically different" is particularly
offensive as it implies that the chronically ill are somehow deviating
from an accepted norm. Referring to the chronically ill as "physically
different" or "differently abled" is no less offensive than referring to
African-Americans as "differently colored" would be (Hillyer, 1993).
Persons with chronic illness are sometimes referred to as having
"hidden disabilities," or disabilities that cannot be seen. Some chronic
illnesses, such as scleroderma, cause outward changes that are easily
detectable. Other conditions, such as cancer, are not easily discernible
simply by looking at the person. The term "hidden disabilities" has been
criticized because it is based on the unfounded assumption that every-
one is able-bodied unless proved otherwise (Hillyer, 1993) and is there-
fore avoided in this paper.
The Effects of Literature on Children
Children read enormous numbers of books. One study revealed
that 80% of parents buy or borrow at least 10 books per month for their
children, and 50% read to their children over 2 hours per week. These
parents reported that 60% of their children spent an additional 2 hours
per week reading or looking at books (Peterson & Lach, 1990).
Children's books may have a profound effect on their readers. One
hospitalized child recovering from polio claimed that reading had a
powerful effect on his feelings during his illness (Coles, 1989). Author
Carson McCullers had multiple illnesses and disabilities as a child; she
viewed literature as her salvation (Bower, 1980). Part of the reason for
the significant impact of children's books is the fact that children may
be relieved and comforted to learn that others have the same inadmissi-
ble feelings and inadmissible impulses as they (Bawden, 1980). Another
reason stories have such an impact is that each story is an invitation
for the reader or listener to identify with the main character.
Stories in which the main character is disabled appeal not only to
persons with disabilities but to all readers (Gordon, 1993). Gordon (1993)
discussed the powerful impact of the story "The Handless Maiden" when
she shared it with children who had been abused.
To understand the possible effects of literature on a reader, one
might imagine three concentric circles. The innermost, simplest circle
represents what the reader remembers. The second circle represents the
extent to which the reader can apply what is read. The outer circle
represents the ways in which the reader as an individual is fundamen-
tally changed by reading (Waples, Berelson, & Bradshaw, 1940). In other
words, a child with scoliosis who read Deenie, Blume's novel about an
adolescent who is diagnosed with scoliosis, might simply walk away
remembering the events of the book, might walk away with new informa-
tion about scoliosis, or might walk away with a significantly improved
self-concept.
Since literature has such a powerful impact on children, many
authors have put forth guidelines for children's literature. These
guidelines are briefly discussed below.
Guidelines for Useful and Appropriate Children's Books
According to Walker and Jones (1986), books chosen for use with
children should adhere to the following criteria: the book's content and
emotional impact should be appropriate for the particular child, the book
should provide accurate information, and the book should not prosely-
tize. Moreover, books must have literary value (Cianciolo, 1965; Walker &
Jones, 1986) and thus be entertaining or fun to read (Nodelman, 1992).
Children's novels dealing with realistic problems should have engaging
and believable plots, the power to make the reader empathize with the
characters, characters which seem real, settings which enhance the
stories, worthwhile themes, and universal appeal. They should be well-
written and subtle and should leave the reader with new insights
(Donelson & Nilsen, 1980). These books should not be didactic. In other
words, they should not instruct at the expense of entertainment (Luken-
s, 1982).
Readers, especially young readers, often identify with literary
characters. This identification can profoundly impact a young reader's
sense of self. All readers can benefit from strong literary role models.
This is especially true for ill and disabled females, as these readers so
often receive the message that they are helpless (Kent, 1988).
Rudman (1995) posits that persons with chronic illnesses should
appear as often in all genres of children's books as they do in reality.
They should be as three-dimensional as other characters and should
represent various ages, racial and religious backgrounds, and economic
levels (Rudman, 1995). Both genders should be represented.
Disability and Chronic Illness in Literature
Persons with illnesses and disabilities are frequently portrayed
destructively in various media. Bogdan, Biklen, Shapiro, and Spelkoman
(1982) posit that persons with disabilities are often depicted as danger-
ous. Films such as Dr. Jekyll and Mr. Hyde (1908), Freaks (1932), Bride
of Frankenstein (1935), and House of Frankenstein (1945) have portrayed
dangerous individuals as physically or mentally disabled (Bogdan et al.,
1982). Dangerous characters are also often disabled in children's films.
For example, the queen in Disney's Snow White must become hunch-
backed in order to carry out her evil plans (Bogdan et al., 1982). News
reporters are culprits as well. Reporters seem surprised when criminals
are not mentally ill (Bogdan et al., 1982).
Disability is often equated with violence in books as well. For
example, Lenny, the cognitively impaired character in Of Mice and Men,
kills a young woman (Bogdan et al., 1982).
Sometimes illness is portrayed in literature as a means to an end.
Gorman (1990) studied the work of Jane Austen in her exploration of
illness in nineteenth century literature. She examined Austen's unique
approach to illness. Austen simultaneously ridiculed the fashionable ill-
nesses of the day and conceded that illness could serve a useful
emotional purpose (Gorman, 1990).
Ill and disabled characters are present in all genres of children's
literature. In traditional fairy tales, there exists a polarization which
equates slowness or unattractiveness with evil (Bettelheim, 1976).
Disability is equated with evil not only in fairy tales but in other
genres of children's literature as well, including fantasy and comic
books (Rudman, 1995). Captain Hook, the malicious pirate in Peter Pan, is
a case in point (Kokaska, 1984).
Even when portrayals of ill characters are not derogatory, I have
observed that characterizations remain stereotypical and plots remain
archetypical. An example of a plot which appears and reappears is the
story of the diabetic youngster who eats sweets and then must be
hospitalized. The youngster, who is usually a girl, does not die, but
learns her lesson and decides to be more careful about her diet. All the
Days of her Life (McDaniel, 1994) is an example of a book with this
archetypical plot.
Even when an ill or disabled character is portrayed sympathetical-
ly in a children's story, often that character is only a literary device.
The ill or disabled character exists only as a vehicle for the growth of
an able-bodied sibling or friend who matures as a result of association
with the ill or disabled character, who does not grow or change at all
(Heim, 1994). For example, when Charlie, the cognitively impaired child in
Summer of the Swans (Byars, 1970), gets lost, it is his sister Sarah who
grows and matures.
Ill and disabled characters are often portrayed as helpless or
needy. In a study of 113 children's and adolescents' books, White (1986)
found that there were only six characters with illnesses or disabilities.
Not surprisingly, all six of these characters were the recipients of help
from others.
Many children's books with ill and disabled characters are prob-
lematic in subtle ways. Sometimes the ill character is portrayed as
overcoming the illness through prayer or hard work or positive thinking
(Rudman, 1995). For example, in Pablito's New Feet (Thomas, 1973), it is
implied that Pablito overcomes the effects of polio because he is not
afraid. This is potentially harmful because readers may believe that it is
their own fault if they cannot overcome their illnesses or disabilities.
Other books, such as the classic Pollyanna imply that the ill or disabled
character can never be happy until a miracle cure takes place (Robert-
son, 1992).
Other times, disabled and ill characters gain acceptance by
becoming heroes. The implication is that ill people are not worthwhile
unless they are exceptionally competent (Rudman, 1995). An example of
such a book is Mystery at Camp Triumph (Christian, 1986) in which
Angie, who is blind, solves a mystery.
Static disabilities are portrayed much more frequently in childre-
n's books than progressive or changeable illnesses. Baskin and Harris
(1977) reviewed children's books with chronically ill and disabled
characters published between 1940 and 1975. The results of their survey
are outlined in Table 1. Baskin and Harris never claimed that their work
was a systematic study: they presented their project as an annotated
bibliography. Despite the fact that it does not present data from a
systematic study, Baskin and Harris' volume is an exceedingly important
one because it contains detailed and useful analyses of 311 books with
chronically ill or disabled characters. Baskin and Harris updated their
bibliography in 1984; an even more recent update was compiled by
Robertson (1992).
Table 1:
Most Frequently Appearing Illnesses and Disabilities
in Children's Books, 1940-1975
(Baskin & Harris, 1977) illness or disability percentage of
books reviewed by
Baskin & Harris that contained a
character with this illness or
disability orthopedic impairment 33% visual impairment 20% emotional
disability 13% cognitive impairment 10%
A Dutch study by ter Haar et al. indicated that 90 children's
books with cognitively impaired characters were published in the last 25
years. Although 65% of these characters were portrayed sympathetically,
almost all these characters were portrayed simply as people whose
cognitive impairments caused problems rather than as individuals with
whom the reader could identify. The investigators concluded that the
image portrayed by these books is that "the life of persons with mental
retardation is a life full of problems and in your daily activities you will
hardly meet them" (ter Haar, 1995).
Drennon (1993) analyzed children's books published between 1970
and 1990 in order to determine whether the medical conditions of
chronically ill characters in these books were portrayed realistically.
She found that the following chronic illnesses were addressed in childr-
en's books published between 1970 and 1990 (illnesses are listed in
order of frequency, with most frequently appearing medical conditions
listed first): cancer, epilepsy, asthma, diabetes, cardiac conditions, al-
lergies, AIDS, cystic fibrosis, hemophilia, arthritis, and muscular dystro-
phy. Drennon found that in 51 of the 52 books analyzed, the illnesses
were portrayed realistically. She found, however, that twenty of these
characters were portrayed stereotypically. Unfortunately, Drennon did
not describe what she means by "stereotypically." Drennon's methods
were excellent as well as clearly described; her study could be repli-
cated by anyone who read her dissertation. The results, however, were
reported in imprecise terms. Drennon made such generalizations as
"Several books in the sample were identified as having themes which
promote understanding yet are didactic" (p. 116) without indicating an
exact number or percentage. Another problem with Drennon's work is
that some very popular children's books with chronically ill characters,
such as the books about a diabetic child Martin's "Babysitters Club"
series, were excluded from her study.
Sympathetic but physically disabled characters include Tom Thumb
and Hop O' My Thumb (MacDonald, 1993). There is at least one female
fairy-tale character with a disability (Thumbelina), but she is very
beautiful (MacDonald, 1993). (Apparently, short stature is more accept-
able than other disabilities. Even on television, there have been short-
statured protagonists, such as Tatoo on "Fantasy Island") (MacDonald,
1993). Smallness is especially acceptable in female characters, who are
not expected to be big or strong.Sometimes the ill character is
portrayed as helpless. During the eighteenth and early nineteenth
centuries, novels for girls often depicted the preferred female role as
that of invalid. In the Phelps' Gypsy series, Gypsy starts out as a wild,
active hoyden and ends as a pale and clinging invalid (Segel, 1994). In
Coolidge's What Katy Did, Katy becomes acceptable to her family only
after sustaining a back injury which leaves her unable to walk (Segel,
1994).
Summary
While ill and disabled characters do exist in many books for
children and adolescents, these characters are often negatively por-
trayed. They are helpless at best; often they are evil. They cause
problems for others and do not grow and change as people. Children's
literature is a powerful medium that affects the readers' attitudes. It is
therefore imperative that children's books depicting disabled individuals
in a positive and realistic light are written and published.
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