An Interview With Disability Activist and “Good Kings Bad Kings” Author Susan Nussbaum

A photo of Susan Nussbaum, who is white, smiling, and has curly hair, and the cover of her book Good Kings Bad Kings.

Susan Nussbaum is a celebrated disability activist, playwright and novelist. Her poignant and humorous debut, Good Kings Bad Kings tells the intertwining stories of disabled youth living in a Chicago institution and is the 2012 winner of Barbara Kingsolver’s PEN/Bellwether Prize for Socially Engaged Fiction. I talked with Nussbaum about her visionary novel, disability oppression, and being a “furiously rebellious crip.”

CAITLIN WOOD: Good Kings Bad Kings is an undoubtedly powerful debut novel. The word ‘intersectional’ gets thrown around a lot, but this book truly lives up to the term. The story centers on disabled youth of color with various impairments, living in a shady institution on Chicago’s South Side. It’s very heartbreaking at times but also invokes a lot of humor. How was this project born? What was the impetus for writing on such a grim but important topic of institutionalization?  

SUSAN NUSSBAUM: When I was still working at Access Living there was a lot of de-institutionalization work being done, and the whole staff would get frequent emails detailing horrifying incidents that occurred at various nursing homes or other institutions.  I started keeping the articles, and after awhile I started gathering studies, law journals, newspapers, whatever I could get my hands on.  I suppose I knew I’d write a book, or try to, and that it would be a novel.  But I’d never written one, had no idea how to write one, and worried about whether I had the discipline to see the project through to the end.  When I started interviewing a few people about their experiences or their expertise, they’d ask what I was using it for and I’d say, “Oh I’m thinking of writing something.” When I started asking for leaves of absence from my job they always wanted to know why, so I’d say, “Well, I have a little writing project.” But I finally had to say the words, “I’m writing a novel.”  

Where does the title come from? It’s touched on briefly in the book but is there more to the phrase?

I read an article from the New York Times while doing research.  A young boy lived in an institution somewhere in New York state, I think.  The boy—he was autistic—was in the institution’s van, accompanied by two aides, one was driving and the other was also sitting up in front.  Meanwhile, the boy, seated in the back, kept standing up out of his seat.  So the aide moved to the back of the van and put the child facedown on the back seat and straddled him, sitting on the kid’s back.  This kind of “take-down,” as they are called, is quite common, even though they’re illegal in some states.  They’re supposed to be done with two people, so someone can hold the child’s ankles while the other one straddles the kid.  Anyway, it’s an extreme form of restraint, no matter how it’s done, and this particular child was only about 13 years old and very slightly built.  The aide who was driving later testified that he saw the boy was struggling, and he heard the other aide say, “I can be a good king or I can be a bad king.” At some point, the weight of the aide crushed the boy to death.   

It became the title because it reminded me how when it comes to kids, the adults have all the power.  And when the adult in question has no emotional connection to the child, and the child’s welfare is turned over to that adult—as is the case in institutions—terrible things can happen.

An interesting aspect of Good Kings Bad Kings is that there’s no overarching voice but instead each chapter is narrated by one of the characters. We get various points of view of the story, including the perspectives of youth with cognitive impairments - something that you don’t encounter often in literature. How important was it for you to write a story highlighting multiple disabled characters? 

I can’t stand the way disabled characters are used in most books, and for that matter in TV and film.  We always see the lone disabled character surrounded by non-disabled characters, and there’s only one reason there’s a disabled character in the story in the first place and that is to have a disability, which serves as The Problem. The disabled characters we’re presented with usually fit one or more of the following stereotypes:  victim, villain, saint, monster.  The fate of the disabled character is usually miraculous cure, death, or institutionalization.    

So it was really important to me to give disabled characters, more than one, their own voices, and the agency to represent themselves and their own perspective on what happens.  And the characters were not defined by their disabilities.  They never thought about their disabilities, really, unless I had to throw something in as a bit of exposition.  

Most importantly, the Problem in my book is not the disability.  The Problem is the institution.  That difference alone makes the story a departure from business as usual in fiction.  You just don’t see that with most disabled characters, because there are very few disabled fiction writers. As more disabled writers and crip artists of all kinds begin to develop, we’re going to see much more authenticity in the way disabled characters are represented culturally. And that will impact the nature of disability oppression. Also important to me was to show disabled characters leading active sex lives in one way or another.  It’s so unbelievably rare to read a book or see a movie with a sexually active, confident disabled character.

Were there any characters you were particularly fond of? My favorites were Yessenia, the defiant (and hilarious) 15 year old sent to the institution after Juvie, and of course Teddy, who wears suits every day and is in love with another resident, Mia who endures a fair share of trauma. 

Some characters were more enjoyable to write, like Yessie, or I should say, their voices came more easily to me, but I don’t think I feel closer to some than others.  I feel it would be like parents who favor one child over another.  And in the same way that parents will shepherd their children into adulthood and send them out to fend for themselves, I feel a bit like, “Well, Characters, you’re out in the world now.  It was great watching you grow, for the most part, but I’m glad you’re gone so I can finally turn your bedroom into my office.”  

While Good Kings Bad Kings is overtly political and eye opening, it doesn’t read as didactic or preachy. What are you hoping readers will take away from the book?

I’m just very happy that people are reading the book.  Really.  I figure if someone is drawn in enough to read to the end, that’s all I can ask for.  I’m satisfied with that.  Now if, as a result of reading this book, people decide to demand an end to institutionalization, buy truckloads of my books for their friends, and happily realize that disabled people are sexual beings, that would be okay too.

In reading some of the reviews for Good Kings Bad Kings (all of which are incredibly positive), I noticed some critics still using outdated, antiquated language (wheelchair-bound, crippled) to describe the characters. Does that bother you, particularly when you’ve written a book that highlights oppression of disabled people, and are a self-identified “furiously rebellious crip”? 

Okay, about that furiously “rebellious crip” comment.  I didn’t actually say that about myself.  I was talking more about the disability rights movement as a whole.  But since you mention it, I’m in favor of people in general getting furious and rebellious about many things.  The “crip” part is optional.

But to answer your question, in some ways the terms people use bother me, but in some ways I kinda don’t give a shit.  It always gets my attention, but I expect it.  I’ve been disabled a really long time.  

As a movement, we’ve fallen short in the terminology department. Disabled is fine for now, but let’s face it, it starts with “dis.”  I don’t care for “ableism” either.  I think “disability oppression” is better, but then what will we call people who are overtly ableist?  Disability oppressors?  I’m hoping the current generation of young disabled activists will come up with a whole new really catchy, really angry but descriptive vocab.  That’d be so cool.

Related Reading: Check out Tales from the Crip—writer Caitlin Wood’s whole guest blog on disability in pop culture.

by caitlin wood
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2 Comments Have Been Posted

disabled heroes

The two main characters in my YA book The End of Normal (just picked up by Burst Books) are twins; one of whom (Charlie) is deaf. The POV is his sister's (Olivia), but Charlie's in nearly every scene and is extremely important to them surviving. I purposely made Charlie disabled because I want young adults to read a science fiction adventure that has a smart, brave, almost super-hero type main character who just happens to be deaf.

The interesting thing is that I had trouble selling it until last week when Burst bought it. Keep up your fight for depicting people with disabilities in your novels -- I know I will.

Heroic disability

So excited to read this book review - there is such a shortage of quality literature with plausible disabled characters. I have ordered this form Amazon and I will pass your review and link to all my members. We have been especially active on the UK deaf community lately so the book is of great interest. Thanks.

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