Down Syndrome in Childrens Literature

Introduction and Instructions for Reviewing Books

Books can be a valuable tool for introducing children to human difference. They can also provide them with the opportunity to read about characters who have similar challenges and/or face similar experiences. Adults who select literature for children that provides information about exceptionalities should carefully examine the texts and understand the benefits and disadvantages of each book. Finding the perfect book, one that provides accurate information in a way that is understanding and accepting of diversity, and avoids all negative connotations, is difficult at best. The following guide was designed to help parents and teachers examine books that present characters who have Down syndrome to young readers. It is divided into eight sections that address the main issues in such texts:

Reading / developmental level Literary standards Accuracy of information Illustrations / photographs Language Stereotypes Acceptance and understanding Inclusion

Each section provides you with details to consider in order to make an overall decision about whether the book meets your own personal standards of acceptability. Books that contain flaws, such as inappropriate or stereotypical language, may be used to facilitate critical discussions with young readers. Therefore, it is not the intent of this guide to suggest that any book should be ignored or rejected. However, careful consideration should be given to the use and intended audience of any book that could perpetuate discriminatory views.

Instructions:
1. Review the main questions (page 3) to familiarize yourself with the intent of the guide. (These questions should be completed after you have finished the detailed sections.) 2. Carefully read the book to be reviewed. Record the name of the book at the top of page 1. 3. Section 1: Reading level Four levels of readers are provided, along with detailed descriptions for each. Consider the intended reader, and determine whether the information, story, and illustrations are appropriate for that childs age or developmental level. Each book chosen for this study is intended for a reader in the Young Child grouping. At the end of the section there is a statement : The book is developmentally appropriate for the intended audience. Check the box that you feel is most appropriate. 4. Section 2: Literary Standards this section contains nine sub-questions designed to consider specific elements of good writing. Consider each question separately and record your responses. Again, an overall impression is requested at the end of the section. Review your responses to the detailed questions in order to respond to the final statement.

Throughout the guide, you will notice a color coding system associated with the available responses. The responses range from green (more appropriately written) to pink (less appropriately written), and may help you formulate your overall response to a particular category. Best

5.

Continue with sections 3 8, in a similar manner, responding first to the detailed information and then forming an overall impression for the final statement.

6. Using the final statement from each section, record your responses to the statements on page 3. 7. Check Yes or No near the top of page 1 to indicate whether you would recommend this book.

Down syndrome in Childrens Literature Evaluation Tool

A Few Words About Down Syndrome From The Canadian Down Syndrome Society
http://www.cdss.ca

Down syndrome, redefined

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada. Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention. The sole characteristic shared by all persons with Down syndrome is the presence of extra genetic material associated with the 21st chromosome. The effects of that extra genetic material vary greatly from individual to individual. Persons with Down syndrome karyotypes may be predisposed to certain illnesses and medical conditions, but that genetic arrangement does not guarantee their development. The same illnesses and conditions are also present in the general population. Timely and accurate diagnosis and appropriate treatment of these illnesses and conditions improves both the length and quality of life, to the same extent as would be expected in the population without Down syndrome. Vigilance on the part of health care practitioners is required to identify and treat any of them if they arise. Conversely, studies have shown that people with Down syndrome have a statistically lower risk of developing certain other illnesses and medical conditions. That genetic arrangement does not guarantee that they will not develop. Down syndrome commonly results in an effect on learning style, although the differences are highly variable and individualistic, just as in the physical characteristics or health concerns. The most significant challenge is to find the most effective, productive methods of teaching each individual. The identification of the best methods of teaching each particular child ideally begins soon after birth, through early intervention programs. November 2003

Language Guidelines
The correct spelling is Down syndrome. There is no apostrophe s (Down). The reason is because in English, adding an apostrophe indicates ownership is involved. Dr. John Langdon Down provided the first formal description of the syndrome, but he did not have Down syndrome and thus no possessive is used. Also, the s in syndrome is not capitalized. Other countries may continue to use Downs. Use person-first language. Individuals with Down syndrome are people first. The emphasis should be on the individual, not the disability. For example; a baby/child/adult with Down syndrome, not Down syndrome child or Downs baby. Down syndrome is a chromosomal arrangement that is present at conception. The term birth defect is not correct. Down syndrome includes developmental disability. People with Down syndrome usually have mild to moderate intellectual delay. The term mental retardation is considered outdated in Canada and should be avoided. The term mongoloid is considered extremely inappropriate. Avoid generalizing people with Down syndrome as always loving, always smiling, or perpetually happy. People with Down syndrome are not all alike. The diversity of abilities and characteristics among individuals with Down syndrome can be best described as the same for the general population. Avoid judgmental terminology. A person with Down syndrome is not suffering from, a victim of or afflicted with Down syndrome. Down syndrome is not a disease and these references only diminish a persons dignity. Suggestions include living with Down syndrome or has a medical condition known as Down syndrome. People with Down syndrome have the same rights as everyone else and should be treated with respect.

Main Evaluation Statements

1. The book is developmentally appropriate for the intended audience.

Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

2. The book is well written (Overall impression of the writing)

Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

3. The information presented is current and accurate.

Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

4. The illustrations or photographs used are positive and add to the quality of the book.
Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

5. The book avoids loaded words and is respectful.

Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

6. The book avoids stereotypes of Down syndrome.

Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

7. The book promotes the acceptance and understanding of people who have Down syndrome.
Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

8. The book provides a positive example of the inclusion of people who have Down syndrome in society.
Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

Section 1: Reading level Is the book developmentally appropriate for the intended audience?
Young Child
(Approx. 5-8 years / grades K 3)

These children will need guidance in comprehending meaning and interpreting stories. They are relative newcomers to literature and have had limited personal experience. They may read simple stories by themselves but are dependent on pictures to carry part of the literary message. They may confuse fiction and life and believe that characters in books are real people. These children have the ability to read more mature books. They have wider experiential backgrounds, and are able to read books of over 100 pages keeping plot line and characters straight. Character identification is frequently strong, and loyalties to particular authors, genres, or content areas often develop. Children at this stage can begin to understand different life patterns. Young adolescents have the ability to read more mature books. They have developed some sense of chronological time. They understand and are interested in boy/girl relationships, and can perceive subtleties in human behavior. They are caught in the conflict of needing to conform to peer pressure while simultaneously developing their unique identities. By this stage, it is possible for them to understand and enjoy books using more sophisticated literary techniques. These readers can understand novels of considerable complexity. They are potentially responsive

Mature Child
(Approx. 9-12 years / grades 4-6)

Young Adolescent
(Approx. 13-15 years / grades 7-9)

Mature Adolescent to ambiguities of human behavior as expressed in literature, to paradoxes, and to multiple levels of
(Approx. 16-18 years / grades 10-12)

meaning. They usually see themselves as mature and are interested in concerns of the adult world.

Adapted from Blaska and Harris (1977)

The book is developmentally appropriate for the intended audience.

Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

Section 2: Literary Standards Is the book well written?

Character Development: Dynamic Plot: Well developed Theme: Other themes Conflict Resolution: Yes Tone: Happy Style: Yes Setting: Well developed Point of View: Is the character who has Down syndrome: Dynamic (credible, consistent, multidimensional, evergrowing) or Static (does not undergo important change or learn from his or her experiences, unbelievable)? Somewhat Neutral / Somewhat Static Dynamic Dont Know Static Is the story line: Well developed (interesting and believable) or Forced (dull and unnatural)? Somewhat well developed Neutral / Dont Know Somewhat forced Forced

Does the book concentrate on Down syndrome, or are other themes present? (i.e.: friendships, family life, animals, community, etc.) [Note themes used] 1. Somewhat believable 2. Neutral / Dont Know Down syndrome only

Is there a believable solution to the main conflict in the story? Somewhat unbelievable Unbelievable

Is the overall tone of the story Happy (reflects respect and empathy) or Sad (reflects pity)? Somewhat happy Neutral / Dont Know Somewhat sad Sad

Is the writing style appropriate? (consider language, humor, and sentence structure) Somewhat appropriate Neutral / Dont Know Somewhat inappropriate No

Is the setting of the story Well developed (clear, believable, detailed, and enhances the story) or Trivial (unimportant, not well defined, unbelievable) ? Somewhat well developed Neutral / Dont Know Somewhat trivial Trivial

Is the story told from the perspective of the character with Down syndrome? Unidentified Other narrator Is the moral of the story presented in a way that is overly Didactic (preachy, forced, overbearing) or Natural (seems well integrated into the conflict of the story) ? Somewhat Neutral / Somewhat Didactic natural Dont Know didactic Relative

Person with Down syndrome Didacticism: Natural

The book is well written (Overall impression of the writing)

Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree

Section 3: Accuracy of Information Does the book present honest and accurate information about Down syndrome?
Honesty
Developmentally consistent and believable (Character who has Down syndrome behaves and speaks appropriately) Agree Realistic Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

(Character who has Down syndrome is represented in a realistic manner) Partially Agree Neutral / Dont Know Partially Disagree Disagree

Situations (Character who has Down syndrome is in realistic situations school, community, family) Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

Accuracy
Factual Agree (Medically correct information about Down syndrome) Partially Agree Neutral / Dont Know Partially Disagree Disagree

Language (Terms used to describe Down syndrome are appropriate) Agree Current Agree Partially Agree (Current terminology is used) Partially Agree Neutral / Dont Know Partially Disagree Disagree Neutral / Dont Know Partially Disagree Disagree

The information presented is current and accurate.

Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree

Section 4: Illustrations Do the illustrations or photographs used add to the quality of the book?
Yes
Physically accurate? Positive emotional tone? Add to story? Avoid stereotypes? Visually appealing? Do not interfere with text?

No

Neutral / Dont Know

The illustrations or photographs used are positive and add to the quality of the book.
Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree

Section 5: Language Is the language used throughout the book respectful?

Language used to describe the character who has Down syndrome should be: People-first (person who has Down syndrome, not Downs girl, or Down syndrome boy) Respectful , not condescending Look for Loaded Words ( Check words used, enter others that are inappropriate ) Lazy Sick/ ill Suffering / suffers Stupid Idiot Other: 1. Mongoloid Retarded Dumb / dummy Crazy Mistake 2.

The book avoids loaded words and is respectful.

Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree

Section 6: Stereotypes

Does the book perpetuate the stereotypes typically associated with Down syndrome?
General Disability Related (Bogdan and Biklen, 1977 ) Pitiable or pathetic Object of violence Sinister and/or evil super crip ( overcoming disability ) His/her own worst enemy A burden Incapable of fully participating in everyday life Angelic Overly friendly Aggressive Unique connection to nature / music Clumsy Lazy Overweight Down Syndrome Specific

The book avoids stereotypes of Down syndrome.

Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree

Section 7: Acceptance and Understanding Does the book provide readers with a greater understanding and positive image of people who have Down syndrome?
Should
Provide genuine insights Portray acceptance in the general community Emphasize uniqueness and worth Present positive role models Present a whole person not just a person who has Down syndrome Respect all characters Elicit a personal response from the reader Build understanding

Should Not
Make value judgments Perpetuate false stereotypes Ridicule Focus on differences Portray character as less valid Require character to have extraordinary special talents in order to be liked Send overt and/or covert messages that validate discrimination Place guilt on the character who has Down syndrome or his/her family

The book promotes the acceptance and understanding of people who have Down syndrome.
Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree

Section 8: Inclusion Does the book portray an inclusive environment?

The character who has Down syndrome has successes instead of, or in addition to, failures. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The character who has Down syndrome is portrayed as one of us not one of them. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The character who has Down syndrome is a contributing member of society not just the recipient of charity, patience, and service from others. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The book shows the character who has Down syndrome in a range of community of settings not just special ed. classrooms, sheltered workshops, Special Olympics Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The character who has Down syndrome is has a range of relationships not just with family and/or paid service workers. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The story elicits empathy from the reader rather than pity. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The character who has Down syndrome makes his / her own choices. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

Other characters have high expectations for the character who has Down syndrome. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The character who has Down syndrome interacts with non-handicapped characters Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The story could be to be told in the same way even if the main character did not have Down syndrome. Agree Partially Agree Neutral / Dont Know Partially Disagree Disagree

The book provides a positive example of the inclusion of people who have Down syndrome in society.
Agree Somewhat agree Neutral / Dont Know Somewhat Disagree Disagree