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What is disability culture? Disability culture is a very broad term that describes the cultural view of people with disabilities. Disability can be represented as a culture, even though there is a great range of differences among the people with disability. The disabled community is the most diverse community and along with it comes many cultural views. These views vary greatly, and some express these views in their writings. Susan Nussbaum, in Good Kings Bad Kings, does just this. In Good Kings Bad Kings Susan Nussbaum describes the lives of teenagers with disabilities and what they go through and experience in the institution they live in.
Although the teenagers are in the institution, many things in their daily lives are similar as to what would happen if they lived in the world outside of the institution.
But those teenagers that live in the institution have little or no control over their futures. Good Kings Bad Kings changes how we see what being disabled is like and the culture surrounding it.
What disability culture is, is different depending on the person you are talking to. Everyone has a different view on disability and its culture. The story is told through the perspectives of seven characters. These seven characters are either patients or employees of the institution and each have his/her own view of disability. For example, Yessenia, a patient that is confined to a wheelchair at the institution, doesn’t understand why all these people need to be in the institution with her but remembers it was the same way when she.
Went to her old high school, “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.” (Nussbaum) Yessenia does not believe all these people have something that disables his/her life so to her it does not make sense that all these people are always sent to the same places. She is brought into the institution after fighting with someone at her old high school and gives many insights throughout the book to what happens at the institution.
One character Yessenia creates a bond with is Jimmie. Jimmie wanted to make it as a singer but ended up becoming homeless. When she returns home and meets up with an old friend, a character named Joanne, who helps her get a job at the institution. Jimmie has a certification as a nursing assistant, so she lands the job. Jimmie and Yessenia forge a kind of sisterly connection. Jimmie looks out for Yessenia as if she was her older sister, and even takes her on a trip to see Jimmie sing. But Jimmie does not only allow Yessenia to have fun but still holds standards for her. When Yessenia is caught trying to steal Jimmie does not simply just let it go.
Another character that we come across is Michelle. Michelle is a recruiter that the state has hired to fill beds at the institution. Michelle receives $300 for every bed she brings in. Michelle is a shallow money seeker. She goes to homeless shelters and other spots to find people who would benefit from being put into the institution. One character Michelle brings into the institution is Cheri Smith, who is schizophrenic and has some physical disabilities. Michelle lies to Cheri by telling her she will have her own room at the institution. Michelle lies to her because she has a rationalization that it is better to be in an institution than a homeless shelter. Cheri ends up being transferred to an insane asylum, and many of the kids are upset with this. Michelle sees her at the asylum, where she is doped into a near-vegetative state.
She is horrified by this and the fact she is the reason she has gotten to this state. Michelle, in the beginning, believes bringing these children to the institution is best for them but starts to question this idea because of the kids. Michelle also meets Joanne. Joanne takes on a job at the institution. Joanne becomes dependent on a wheelchair after being hit by a bus. She’s still in school but does not feel like she belongs. After being hit by the bus she ends up with a lot of money from the settlement and she lives by herself. Joanne understands what the kids in the institution is going through but she is well aware she has way more than they ever will because she has money, “’There are poor people,” she notes, “and then there are poor disabled people. One of those things suck, but both together suck stratospherically.’”
Joanne also works with the same company as Michelle but they have two different perspectives on the company. Michelle likes everything about the company where Joanne sees the reality of it. She realizes the company just keeps the children until they die and never become independent. Because of this Joanne makes Michelle doubt that the company does not have the kids’ best interests in mind. Another character we come across in Good Kings Bad Kings is Ricky. He is a driver and aide at the institution. Ricky had a rough childhood, but because of this he understands why the kids act up and goes easy on them. He is often called to restrain kids who act up at the institution and takes them to the time-out room. Ricky always finds some way to show the kids kindness.
Ricky also grows fond of Joanne and one day offers her a ride home, so she does not have to sit waiting for a bus in the rain. They almost immediately hit it off, start flirting, and eventually end up in a relationship. Teddy Dobbs had surgery to remove a tumor in his back when he was very young. That made him wheelchair-bound. He is also developmentally disabled. At 21, he will age out of ILLC next year. He wants to run away because he does not want to live in an old age home. He is engaged to Mia, who is two years younger.
Mia is wheelchair bound and comes from an abused home. The abuse continues at ILLC when a staff member, Jerry, rapes her one night. She is ashamed of what happened to her. Between her shame and the threats from the aide, she never reveals what happened. She breaks it off with Teddy, without explaining why. He does not understand what has happened. He acts out, ramming his wheelchair into the wall. Louie, one of the aides, throws him roughly into the time-out room. Mia eventually starts suffering from a sexually transmitted disease that Jerry had given her. She has to go to the nurse. When the nurse realizes what happened, she pressures Mia to say who she is having sex with. Mia names Jerry and he is arrested soon after.
Things are still awkward between Mia and Teddy, though. It takes a while, but he eventually comes around to talking with her. They get back together. Joanne tries to help him at the Center for Disability Justice, where a lawyer is planning for ways to have him transfer to a semi-independent residence instead of another institution. A fight breaks out in the cafeteria between a staff member and a student. Pierre, a student who is often getting in trouble, is confronted by Louie, an aide. It turns out that Pierre did not do what Louie is accusing him of doing.
Louie, an ex-prison guard, is too rough with Pierre, and knocks him down. Pierre responds by stabbing Louie with a pencil in the chest. Louie breaks Pierre’s jaw in retalliation. Then Jimmie practically picks Louie up and smashes him into a wall. Louie is put on leave pending an investigation after that. Pierre winds up transferred to the asylum. Teddy is put in the shower by one of the aides. She leaves him alone for a few minutes to talk on the phone. The water comes out too hot, and he falls out of his chair trying to get out of the shower. He dies in a hospital a few days later. After the funeral, Yessenia stages a protest against ILLC. She straps herself to a tree out front with a sign that says “This place abuse and kill children.”
A few other students join her. Joanne joins, and also makes a few calls to disabled groups in the area. They come out as well, and get the media to come. The protest lasts until nightfall. In response, ILLC hires two additional aides, a good therapist, and a few other changes are made. It is too little, too late for people like Yessenia, though. She is ready to leave as soon as possible. She even skips school to meet up with a man she met on a dating site. The end of the book has all of the characters either joining or splitting off. Joanne is fired. Michelle quits. Ricky is looking for a better job. Joanne and Ricky are in a serious relationship. Jimmie wants to be Yessenia’s foster mother.
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. The book is set in a nursing home for young adults with disabilities, and they narrate their lives in their own voices, chapter by chapter. The reader also meets those who harm them, through venality (for-profit nursing home operators, for example) or through ignorance (underpaid and ill-trained attendants, for example). But even with their mobility challenges, these youngsters are able to mobilize themselves in order to drive changes in their own circumstances and to agitate for justice.
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