Tracy Koretsky


Recently, I had an experience so interesting it merits a report: I spent six weeks reading twenty-seven books each depicting a character with a developmental disability. The characters ranged from infants through adults, from people with somewhat mild Asperger’s to severe Fetal Alcohol syndromes. What made these books more interesting – and also less unique – is that they were written for children.

Spanning from read-aloud picture books through novels for the most mature young adult, the books varied in setting from the years 1095 through the distant future, from the rodeo to an Internet club in a housing development. As for “function” -- if you will -- there were examples of everything from etiquette models for the use of therapists and special education instructors, to mysteries, to evangelical conversion.

What they had in common was that they were all submitted to the Dolly Gray Award Review Committee. This prize, given every even numbered year by the Council for Exceptional Children’s Division on Developmental Disabilities in conjunction with the Special Needs Project, recognizes, according to its prospectus, “effective, enlightened portrayals of individuals with developmental disabilities in children’s books.”

Notice that the focus is on portrayal. It is not upon the book itself -- not on its story line nor literary quality, nor, for that matter, its presentation. Not any further, that is, than those elements relate to the ability of the book to attract readers, and thus be more effective.

That’s where I came in. While other panelists contributed their professional, first-hand, or family experiences, it was my job to consider these books as overall works of literature. But again, not just works of literature, works for children.

Children’s books are subtle texts – always meta-texts -- adults messaging to young readers via story. all children’s books have at least two audiences: the reader and the adult who buys the book for the child or the library. The first needs to be engaged if the book is to not feel like homework; the second wants the experience to be somehow improving. Or, all right, let the book feel like homework, as long as it is very, very improving.

So, let us not forget that it is ultimately with the paying audience in minds that publishers determine what books will be published. I make this point because, if you search a site like Amazon for books portraying characters with disabilities at all – much less specifically development disabilities – you will find that almost all are for children. The few -- though generally best selling -- adult titles are almost exclusively memoir. Now, I do not believe for a moment that fiction for adult readers that portray characters with disability is not written. Only that it is rarely published.

To my mind, this raises a question: do adult readers suspect that a novel featuring a person with a disability will be some how good for them – the literary equivalent of eating their vegetables? That its intent will be to moralize as opposed to simply entertain? And if so, how do the books we read as children and buy for our children now shape that response?

In fairness, to answer that properly would require some historical survey, which is not my intent here. Rather I will leave those questions as food for thought as I re-focus on contemporary examples: remember those books I said I’d read recently? They’ve all been published within with the last two years. And so my survey follows.

One coarse way to parse the list is to separate out the titles intended as object of use, those that are designed to model positive behaviors to children with disabilities or make them feel less alien in the world. There are those for their young siblings addressing much the same needs, and those for the classroom into which they are mainstreamed. Though these books are generally narrative and have elements of fiction, and though they are certainly not uninteresting as a class (particularly the fascinating translated memoir of an eleven year-old Danish girl unfortunately entitled Do You Understand Me?: My Life, My Thoughts, My Autism Spectrum Disorder) they are educational tools, not literature.

Removing those leaves 18 titles. In other words, a full third of the entries fell in the previous category, including almost the entire list of picture book entries. Only one of these by the extremely well-published children’s author, Virginia Kroll, would I move into the category of “literature.”

It also happens to be the only title on the picture book list that does not have the word “autism” or “disability” on the front or back covers. Of the remaining, all but one place the word prominently on their front covers. Clearly, placing them so improves sales of these books or their publishers wouldn’t do it. Adults who seek and buy books like these are a niche market, and hey, these publishers are working hard to serve them; the publishers aren’t the enemy. But as clearly, the “packaging” of a book is significant to all readers, significant in the linguistic sense – that it sends semaphores. This is only more so with children, especially in the case of picture books. By using their covers to reach a niche market these publishers are telling their youngest readers that this is a niche subject.

Yes, yes, the adult reader can skip those words when sharing the book aloud, but if it precludes any young readers at all, then it is a failure of mission. My suspicion is that these publishers have weighed that, and in the end, have determined that they can only get books to that niche market with a cover signifier.

The one exception -- the entry by Virginia Kroll -- is only a slight exception because its title appears beneath a broad red banner indicating “The Way I Act” series, in other words, an educational series addressing ethics and social behavior. If that’s not enough, its title is Cristina Keeps a Promise which not only informs children a priori that this is going to improve them greatly but far worse, gives away the ending.

That aside, I was quite impressed by the degree of narrative complexity Kroll introduced using fewer than 1000 words, and more impressed that she did not treat children like dopes. As a piece of children’s educational literature, this was a strong piece of work, but as an effective, enlightened portrayal of a character with a developmental disability?

On page one we meet Cristina’s younger brother who is “practicing for the Special Olympics” (if ever there were a cultural signifier). Why is it important that Cristina keep her promise to her brother? Because it is important to keep promises to our younger siblings or because this younger sibling is practicing for the “Special Olympics.” Well, “What are Special Olympics,” a young reader might ask, and then a conversation opens -- an achievement for a piece of literature. But I suspect that is not the only reason a writer of Virginia Kroll’s obvious skill made the choice.

Another might be that giving Cristina’s brother a developmental disability raises the stakes dramatically. Though not the main obstacle, it contributes to the tribulations the protagonist must overcome. Why there were even two entries whose authors made the same choice: they both had their protagonists run off with a developmentally disabled younger sibling.

This raises two points: first, in general, the protagonists are not the characters with the disability and second, in general, the disability is always a tribulation to overcome.

To be clear, I mean by protagonist the character who moves the action forward and resolves the drama; the person the story revolves around. A heroic protagonist is one who brings about plot resolution by his or her actions. It is not necessarily the same character as the speaker.

Not surprisingly only two entries featured protagonists with disabilities. Heroic protagonists particularly test children’s book authors. In reality, children have little power. Hence the plethora of books set in orphanages or out in nature or in fantasy worlds – any place where adult authority can be credibly dispensed with. You might as well square this challenge when considering a character with a developmental disability.

No wonder only three authors attempted it. A second, similar, challenge -- giving the character with a disability a first-person voice -- was only attempted by two (one of them as a heroic protagonist.) In fact, in only four entries did the character with a developmental disability even play a large role.

This is not entirely a bad thing – in most of these stories having a sibling with a disability, or a friend with one, or some kids at school is just depicted as a normal part of a full life, part of the background. In a couple, the character’s special ability was an asset to the community. Only in three plotlines did the character with a disability function as the central obstacle basically amounting to an imbalance of attention within the family.

It does mean however that, from the perspective of our award committee, useful examples of developed portrayals of characters with developmental disabilities were relatively sparse. There were perhaps six. One of these, Rules, by Cynthia Lord -- thanks to its 2006 Newberry Honor book status -- will probably enjoy strong sales and enter the culture.

But returning to my earlier point, if, in general, not protagonists but rather only as further tribulations for the protagonists to overcome, how do the characters with developmental disabilities function in contemporary children’s literature? The question contains the answer: they improve the protagonist. The young people whose lives are touched by characters with DDs are deeper, wiser, more empathic, ultimately more likable, foiled against bullies and ignorant adults. It is as if the person with the disability has been included just to be a kind of light to shine on our hero.

It is with this literary conceit in view that I offer a tour of the most provocative entries, I invite you to join me in the next issue of Wordgathering, to be published in March of 2009.


Tracy Koretsky is the author of Ropeless, a 16-time award-winning novel that offers a fresh perspective on disability. (See the interview about Ropeless in the March 2007 issue of Wordgathering). The novel is reviewed in the January issue of New Mobility. You can also find an essay by her about poetry revision in POEM, REVISED (2008, Marion Press).