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Tuesday, December 24, 2013

Rewriting Images Of People With Disabilities

After a car accident left her wheelchair-bound, Susan Nussbaum became an author and disability activists. She wanted literary representation of people with disabilities to have more complexity. (Susan Plunkett)

After a car accident left her a wheelchair user, Susan Nussbaum became an author and disability activists. She wanted literary representations of people with disabilities to have more complexity. (Susan Plunkett)

Chicago author Susan Nussbaum became a wheelchair user as a result of a car accident in the 1970s.

While recuperating, she tried to recall images she had of disabled people from literature, to see if they could inform her about how she could live her new life.

She was surprised by the depictions she found.

“They were all either incredibly inspirational, or heroic, or they were, you know, horrible villains because they were so terribly bitter about their disabilities,” Nussbaum tells Here & Now’s Jeremy Hobson. “Or they were begging people to kill them.” Those images made her feel as if “you should be ashamed that you do things differently.”

Nussbaum became an advocate for disability rights and the author of the novel “Good Kings Bad Kings.”

The book won the 2012 PEN/Bellweather Prize for Socially Engaged Fiction and was recently released in paperback.

“Good Kings Bad Kings” takes place in a fictional Chicago center for young people with physical and mental disabilities. It tells their stories from multiple points of view: not only those of residents, but also those of workers.

“I knew I wanted to see characters that were different than anything that I was able to see anywhere else,” Nussbaum said, “Disabled characters that were recognizable as human beings.”

  • Please be aware that the following book excerpt is not appropriate for younger readers, and contains some strong language.

Book Excerpt: Good King Bad King

by Susan Nussbaum

Yessenia Lopez 

My tía Nene said three is the magic number and when three things happen to you that are so, so bad and you feel like the whole wide world is just throwing up on your new shoes, don’t worry. Your bad luck is about to change.

And I am sitting inside a room that smells like a urinal toilet at a place called the Illinois Learning something something. It’s only my second day here and would you believe these people already got me in the punishing room? So this is three.1224_kings-bookcover

My name is Yessenia Lopez, and before they stuck my butt in this place I went to Herbert Hoover High School in Chicago, Illinois. I went there on account of I am physically challenged, and they send the people which have challenges to Hoover. They send people with physical challenges, but also retarded challenges, people been in accidents like brain accidents, or they’re blind or what have you. I do not know why they send us all to the same place but that’s the way it’s always been and that’s the way it looks like it will always be because I am in tenth grade and I been in cripple this or cripple that my whole sweet, succulent Puerto Rican life.

My last day at Hoover was the beginning of all hell breaking loose. I was going down the hallway like usual minding my own sweet business when Mary Molina comes straight up at me and real, real close she says —

No. I cannot even say the words to tell this story. That’s how bad those words was that that bitch said to me. But I looked in that horsey-looking face and said, “You trifling desgraciada sinvergüenza. You want to confront with me? You gonna pay the consequences.”

That wasn’t the first bad name she called me but it was gonna be the last.

Tía Nene told me if anybody talk down on me or talk down on the people of Puerto Rico or get up in my face like they think they better than me, I need to kick that two-­faceded person’s ass. I told Tía Nene before she died — okay, not really before she died, it could have been I told her after she died when she was already up in heaven with the Lord Jesus — that I would always remember her and always remember everything she taught me. I told her in my mind before I left for school on that very day that I hope she knows I always want to make her proud. Then I imagined Tía Nene kissed me on the top of my head and said, “You do what you gots to do and have a good day, chica.”

My mother gave me to my tía Nene on the day I was born into the world. My tía was more my mother than my real mother ever was. I even look like my tía because I gots big eyes and long, wavy hair and my real mother gots tight, curly hair and little, beady eyes. And my skin is more darker like my tía’s — not dark dark but just dark — and I am more curvaceous even at my young age, just like Tía Nene. I called my tía my mother and she called me her daughter and that’s that.

After school was over I went outside to where all the buses was at, waiting to load us up and drive us home. The fumes coming out the buses looked like big white clouds because it was cold. You could see the breaths coming out the mouth of all those pupils just like Indians sending smoke signals. Everybody was all bundled up in coats and hoods and it was hard to see who was who but I knew to look in the little yard next to where the buses line up. That’s where she always goes. That’s where I saw her.

First thing I did was wheel right up on her, pull my footrest up offa my chair, and grab onto that hair to hold her steady and whack her acrost the head, and then I pushed her right offa her chair. But I’m still holding her mop in my fist, so when she went down I had a big clump of that ugly-­ass hair in my hand and she was screaming her Mexican butt off. Then I hop down offa my chair and sit right on top of her and pin her down to the ground. By now I can feel a bunch of pupils around me, everybody shouting, trying to get close, trying to see what’s happening, and all of them yelling, “Fight! Fight!” and she’s trying to push me off and hit back but she couldn’t land more than a scratch on my face. But that was all I needed ’cause when I wiped blood offa my cheek I felt everything rise up in me and I lifted my footrest high up in the air and I gave her a thwack! Then blood starts trickling down from her mouth and the cheering goes higher and I raise up the footrest again thwack and again thwack! Then Veronique, my best friend from fourth-­period hygiene, busts through the crowd and starts yelling, “Yes-­sie! Yes-­sie!” till it sounded like every challenged person in all of Hoover was shouting my name and I gripped my footrest real tight and felt my arm raising up high in the air — and then a security guard grabbed my wrist hard and yanked the footrest out my hand and drug me up on my chair and pushed me inside to Mrs. Maloney’s office.

I looked down at myself and I had blood all on my pink overalls which I was wearing that day and under my nails. I felt my cheek ’cause it stang from her putting her claws on me.

Mrs. Maloney kep’ asking me why did I do it, why did I do it, you know? And I told her the truth. I got no need to lie. I said, “Because she called me a Puerto Rican bitch.”

I’m not sure if getting three months at Juvie for aggravating assault counts as the number two bad thing that happened or the number three bad thing. I’m pretty sure Juvie was number two.

The number one bad thing was when my tía passed into the next life. So it could be the number two bad thing was going to live at St. Francis Home for Young Women where they sent me after my tía died. St. Francis was a pain but it was okay. It was a whole lot better than living in a foster family with a bunch of people who could be freaks and rapers. So I’m gonna have to say, Juvie was definitely the number two bad thing. And this place, the one I’m in at this very moment? This Illinois Center for Cripple whatever, is three. This is where I got put after I got out of Juvie.

And I’m sitting here in this urine punishment room because that pimple-­headed heifer Benedicta, my quote roommate, stole one of my teddy bears out my collection I won playing body-­parts bingo, so I chopped up her blanket. Or I started to until some bald dude interrupted. It’s not like she was in the bed at the time.

I only been here two days but I already hate it. Even worse than Juvie. But I can’t talk no more now ’cause I see cigarette smoke all outside the window of this punishing room, so it must be that bat Candy come to get me. Candy’s a house­parent. That’s what they call them here. After she sucks that thing to the nub she’ll open the door. That’s what the boy from on my floor said when they was pushing my chair to the elevator. I guess he’s been in this room hisself a time or two.

Okay, I got a question. If three is the magic number, then do you get three good things after you finish with the three bad? Or just one good thing and then three bad things again? ’Cause if that’s how they work it, then it is not fair. Or what if another thing happen that’s bad? That’s four bad things in a row, so that can’t happen, right? I wish I knew to ask Tía Nene for more details at the time.

I wish I knew to ask Tía Nene a whole lot of things.

Excerpted from the book GOOD KING BAD KING by Susan Nussbaum. Copyright © 2013 by Susan Nussbaum. Reprinted with permission of Algonquin Books.

Guest

  • Susan Nussbaum, author of “Good Kings Bad Kings.”

Amended copy: We have changed the word “wheelchair-bound” in the original web copy to “wheelchair user.”


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  • olderworker

    Although nursing homes seem to be expensive, there are cost savings in the volume of meals prepared, rehabilitation therapists being together in one place, etc. (I’m responding to Ms. Nussbaum’s comment about how “expensive” nh care is and how there should be funding to maintain people’s independence at home.

    • dc matthews

      811 and other separate complexes are good for people who are retired at any age +/or need full time care but community living is always preferred for those who want to participate and be productive in the community.

  • Disabled in hingham, am

    Thank you for speaking out for the disabled! Personally I am physically enabled with one exception, when I was 17 a surgeon slit me open broke a few ribs and cut out my large intestine, sigmoid (still not sure what that was) and rectum. I went from being a top athlete to feeling completely disabled! After a coma, years in various hospitals, a few more surgeries and a few years of depression and wearing a colostomy bag to high school and college, not to mention a back brace I now have something called a continent illeostomy, which means that to do the normal bodily function of defecating, I have to stick a tube into ny stomach, really gross. Whereas I am not sure that I can be legally defined as disabled, I certainly feel the impact of living in a world which is 99.994% enabled. Simple things such as a private public toilet are literally almost non existent causing me much angst. I appreciate you speaking out for your disabilities but just want to add another voice to another type of pseudo disability.
    Thanks for listening.

  • margaret sohar

    I’ve been a physical therapist for over 40 yrs, most of my career working with individuals with multiple handicaps. This brought me into Special Ed classrooms , Day & Residential programs, as well as nursing home settings. I have been witness to the serious abuses Susan refers to. I would try to advocate from within as a working professional only to be viewed as ” a negative scanner” I would move on thinking another program would be better but what I found was the Directors were highly paid and the direct care staff were very poorly paid, often working 2 jobs, not supervised or trained adequately, etc. There were some very mean caretakers who took out their stresses on these vulnerable people but in some cases the staff were protected by state unions. not a day goes by that I don’t think of certain individuals who I still dream of “rescuing”. The LA times has a recent article(12/22/13) “Voice of Silent prison” about what it’s like to be Autistic and not be treated with dignity. I am happy to see more attention being paid to those who have difficulty being heard on their own. I will buy Susan’s book and applaud her for her work.

  • TrentC

    Since becoming ill and disabled with neurological issues (yet I still look “well fed!” and “pretty good!”) I have learned that you will be treated as sub human. Like she said, it’s unbelievable. CARRY A RECORDER! I can’t count the times I get ‘the smirk’ when I tell people how I am treated… I wipe that smirk off their face when they hear it is true! Not to mention putting the scum in their place.

    It’s war on the disabled in 2013 America – time we fight back!

  • Dissabled Resources

    Worst thing that ever happened to me was about ten years ago… One day I was strolling down the sidewalk in South Central like I always do, but this day was a bit
    different because I was detoured down an unfamiliar street, At the end of the
    block there was a large (about 7+ inches drop) curb so I popped a wheelie,
    drove over and whack the frame of my wheelchair broke, was a struggle to move,
    no way was I able to make it up the over curb.. I saw some male individuals
    walking towards me. They asked me if I needed help and I replied yeah. Was about
    12 noon at the time and there were many people watching them as the tossed me out from my wheelchair face first into the pavement, dragged me and stuffed me into
    the sewer drain I grabbed the bar that went across the drain to prevent me from
    falling, I was able to pull myself back up and onto the street gutter and no
    one of course helped me. Seemed like hours, an officer finally arrived, but was
    worse than the attackers. The jerk officer pulled my shirt up over my head (my
    arms are pinned in my shirt up above my head), then he pulls my pants down and
    rolls me over and tells me to stand the F up… I try and tell the officer am a
    paraplegic but before I can get the words out he whacks me in my mouth and repeatable orders me the get the F up-whack, get the F up-what, what the F is your
    problem-whack… it was a complete nightmare with all the extra trimmings to
    boot!

  • dc matthews

    The walking wounded need far better rep too. :)

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