Once Upon a River and Authentic Disability Representation

Plain language version: Review of Once Upon a River

After a heavier week researching mid 19th century institutionalization efforts, I’m excited to write instead about a book that I absolutely adore. There are so few books with characters who have intellectual disabilities, and even fewer where the character’s disability is not central to the story. And, although I hope to see this change, this is the only book I’ve ever seen feature two very different intellectually disabled characters in this way.

I want to use the post to highlight the details of how these characters are portrayed. Hopefully, it will lead to conversation about how characters with intellectual disabilities are portrayed, what common tropes or stereotypes should be avoided, and what makes a great character with an intellectual disability.

Once Upon a River is a historical fiction novel set in 1887 along the Thames. The book opens with a girl who is rescued from drowning in the river and brought to a local inn, where she recovers but is unable to speak. Those in the community attempt to discover her identity, as multiple people recognize her as their own missing daughter or sister.

Beware of minor spoilers below, if you intend to read the book.

The Characters

The two characters with intellectual disabilities are Jonathan and Lily. Jonathan is fifteen years old, the son of the innkeepers, and he has Down Syndrome. Lily is a middle aged woman with a mild intellectual disability who recognizes the mysterious girl as her sister, Ann.

Disability Accuracy

Both character’s disabilities are portrayed accurately. Accurate representation is the bare minimum, but since it’s not particularly common, it’s noteworthy.

Jonathan has Down Syndrome, and his physical characteristics are consistent with this diagnosis–he has a “short neck”, “moon face”, “almond eyes with [an] exaggerated upward tilt”, and a “tongue that seemed too big for his constantly smiling mouth”. He seems to have a mild or moderate intellectual disability, like almost every person with Down Syndrome.

Lily, in contrast, has no physical characteristics associated with intellectual disability, and, like most people with mild intellectual disability, there is no clear cause.

Emotions

Lily and Jonathan both refuse to fit into stereotypes about the way people with their disabilities experience the world.

A common stereotype about people with Down Syndrome is that they’re always happy. There is some research to suggest that people with Down Syndrome are generally more satisfied with their lives than people without Down Syndrome, but that doesn’t mean they are always happy. Jonathan is “always smiling”, but despite his proclivity for happiness, he experiences a range of emotions throughout the novel, from “wistful” or “quizzical” to “unsettled” and “fretful”. Jonathan seems satisfied with his life–but his emotions are just as complicated as his peers’.

Lily also experiences a range of complex emotions throughout the novel. Many representations of people with intellectual disabilities depict people with ID having relatively simple emotions, and moving quickly or unpredictably between those emotions (think the overly emotional “innocent” or the bumbling henchman–I’ll explore these tropes more in a later post). Lily’s emotions are anything but simple or labile. She grapples throughout the novel with guilt about her role in her sister’s disappearance. She experiences excitement, frustration, and hopelessness about finding a place within her community. She feels fear, anger, and empathy for her abusive half-brother Victor Nash. In many places, the depth and complexity of her emotions carry the novel.

Bullying

Jonathan and Lily, like many people with intellectual disabilities, find themselves the targets of bullies.

Jonathan’s experience with bullying is restricted to the past–there is only a brief mention of previous bullying at school, and his current social life is full of loving and accepting people. Lily’s experience of bullying is extremely present, in the form of her abuser, Victor Nash.

People with intellectual disabilities are often targeted by bullies because they are vulnerable. Lily’s disability certainly makes her vulnerable. She is more gullible, making it easier for Victor to lie to her. Victor exploits her difficulties with self care tasks and building social connections to purposefully erode her self confidence.

But despite Lily’s inherent vulnerability, she is portrayed as one of the strongest characters in the novel. She is adaptable, empathetic, thoughtful, and has strong morals. Readers never doubt that she is stronger than her abuser.

Home

Lily and Jonathan have very different living situations. Jonathan lives at the inn with his parents, while Lily lives, for most of the novel, in a rundown shack on the outskirts of town.

Although Jonathan lives with his parents, his “home” extends much farther. Reminiscent of Hugh Blair’s wanderings, in one scene, Jonathan arrives by himself at the Parson’s house late at night to deliver news. The parson, understanding Jonathan’s difficulty caring for himself, readily takes him in and gives him a safe place to sleep. Jonathan’s community is very much his home.

Lily lives for most of the novel in a small cottage described as an “impoverished place”, “so cold and so damp that only the desperate were willing to inhabit it”. Her happy ending includes moving into the parsonage to work as a housekeeper. Support from the Parson and her community allow Lily to maintain independence and to contribute back to that community.

Lily’s “cottage” home is unfortunately reflective of the reality of many people with intellectual disabilities today. There is a well documented correlation between intellectual disability and poverty in the US. Lily’s living conditions acknowledge this reality without blaming or devaluing her personhood because of it. Her escape from poverty at the end of the novel is beneficial to both her and her community, and she retains her agency throughout the process.

A few problems

Overall, I think the portrayal of intellectual disability in this novel is fantastic. But it would be unfair to gloss over the few places where the representation or discussion of ID was a little… off.

In one place, Setterfield contrasts Jonathan with his peers who are “looking forward impatiently to manhood”, describing his desire to “live at the inn forever with his mother and father”. While it’s perfectly fine for someone with an intellectual disability to live with their parents, this comparison implies Jonathan will always remain childlike in comparison to his peers, which is a harmful stereotype about intellectual disability. Adults with intellectual disabilities are adults, not children.

Later, Rita, a midwife, and Margot, Jonathan’s mother, have a conversation about Down Syndrome. Rita mentions a historical term for Down Syndrome, “Mongol”, which is now considered a racist and ableist slur. Historically, this was considered a technical term and not offensive. The conversation itself is empathetic, with Rita telling Margot that “there are other children in the world just the same as Jonathan”, and Margot admitting that “it’s not easy raising a child who’s different”. But still, I struggle to see the inclusion of the term as more useful than hurtful.

Active Participants

By far, the best thing about the characters of Lily and Jonathan are the central roles they play in the story. Once Upon a River is a novel with a large cast of characters, and it would have been easy to tokenize characters with intellectual disabilities, leaving them at the edges of scenes and dropping a few key words to characterize them as disabled. Instead, Setterfield weaves these character’s lives deeply into the story without prioritizing their disabilities above their unique identities. Jonathan and Lily are active participants in their community, with complex relationships, emotions, and challenges.

I would love to read more books like this. Please let me know of any books you love with intellectual disability representation!