‘Degrees of Difficulty’ Tackles Hard Truths of Raising a Child with Severe Developmental Disabilities

Issue 249

Eleanor Bader Aug 8, 2019

At first glance, the Novotny-Clissold family, protagonists of Julie E. Justicz’s Degrees of Difficulty, seem pretty garden variety: white and middle class with two good looking, well-put-together, opposite-sex parents and two kids. But that’s only when third child Ben is away — in a residential school or hospital.

When Ben is around, people stare, sometimes sympathetically and sometimes not, at the large, drooling, non-verbal boy whose only word, “guh,” is sometimes repeated over and over at high volume. Ben is also prone to grand mal seizures which occur at all hours of the day and night. In addition, Ben’s IQ, 32, has meant that he needs near-constant oversight, a challenge that each member of the household responds to differently.

Dad Perry Novotny, a successful building contractor, is relentlessly optimistic, and spend his off-time researching boarding schools for the disabled in each of the 50 states. Ben has tried dozens, with each sending him packing after he unwittingly uses his physical strength to menace or hurt other children. Still, Perry is unfailingly positive, sure that one day he’ll find the perfect program.

Caroline Clissold does not share her husband’s enthusiasm. A renowned Shakespeare scholar and professor at Emory University, Caroline wants nothing more than to write and do research. She’s frustrated, and finds Ben’s 24/7 needs depressing, even maddening. Over time, she stifles her feelings with pills and alcohol, in essence removing herself from the turmoil that surrounds her.

Similarly, only daughter Ivy, the eldest sibling, copes by losing herself in school work and dreaming of the day when she’ll be able to leave her family of origin forever.

And then there’s middle child Hugo. A star on his high school swimming team, Hugo nonetheless loves nothing more than caring for Ben, cajoling him, playing games with him, and simply hanging out with him. After Ben’s umpteenth school dismissal, teenaged Hugo seems thrilled to have his brother nearby, and in short order becomes Ben’s default caregiver. Perry and Caroline know, intellectually and emotionally, that this is a bad idea, but later, when Hugo graduates from high school, they allow him to move out of the family home with Ben in tow.

Hugo seems to take everything in stride: he makes sure Ben takes his meds, attends all appointments, and eats, bathes, and follows long-established routines; for a while, everything appears to fall into place, thanks to a loose and frequently changing network of home health aides. Still, when the inevitable crisis comes, it jostles each family member’s sense of self and exposes deep-seated guilt, remorse and shame over tasks left undone and sentiments left unexpressed.

This makes Degrees of Difficulty a powerful, emotionally resonant and deeply moving story. At the same time, Justicz — who drew on her personal experience with a profoundly disabled family member — has created a work of fiction that highlights the dearth of programs available to families desperate for respite care. Additionally, it addresses the shortage of well-trained workers who can provide compassionate in-home assistance.

What’s more, that the Novotny-Clissolds are privileged — college-educated professionals with enough money to buy the care Ben needs — but still hit wall after wall, speaks volumes.

To its credit, the novel resists preaching and instead offers characters whose insights beautifully illustrate the toll of inadequate social supports on those who need them. By introducing thoughtful people who are neither wholly likeable nor wholly monstrous, it prods readers to empathize and maybe even begin to imagine how they’d handle being thrust into the complex, chaotic, exhausting world these folks inhabit. The limits of love are writ large here. Elegant and provocative, Degrees of Difficulty is a great read

Degrees of Difficulty
By Julie E. Justicz
Fomite, 2019

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