In­side in­sti­tu­tion­al­iza­tion

Author-ac­tivist dis­cusses lives of the dis­abled

Modern Healthcare - - BOOKS -

Play­wright Su­san Nuss­baum, 59, has writ­ten an eye-open­ing first novel that is al­ready gen­er­at­ing con­tro­versy among the providers who care for the thou­sands of Amer­i­can chil­dren with in­tel­lec­tual, phys­i­cal and emo­tional dis­abil­i­ties. Good Kings Bad Kings, re­leased from Al­go­nquin Press this week, paints a damn­ing por­trait of life in­side a tax­pay­er­sup­ported, pri­vately run in­sti­tu­tion for ju­ve­niles with se­vere dis­abil­i­ties.

The book is set in the author’s na­tive city of Chicago. Nuss­baum, a quad­ri­plegic since 1978 af­ter be­ing struck on a city side­walk by an er­rant au­to­mo­bile, left her job at Ac­cess Liv­ing, a dis­abil­ity rights ad­vo­cacy or­ga­ni­za­tion, to de­vote her­self to writ­ing this work. Mod­ern Health­care Edi­tor Mer­rill Goozner in­ter­viewed the 2012 PEN/Bell­wether Prize for So­cially En­gaged Fic­tion win­ner about Good Kings Bad Kings. Mod­ern Health­care: To­day, most kids with se­vere dis­abil­i­ties are taken care of at home, yet some re­main in­sti­tu­tion­al­ized. Whom are you try­ing to reach with this novel? Su­san Nuss­baum: I am anti-in­sti­tu­tion­al­iza­tion, ob­vi­ously. The char­ac­ters in the novel are strug­gling with the re­al­ity of the in­sti­tu­tion and how to make it bet­ter. Per­son­ally, I don’t think that’s pos­si­ble. Even though I know there are good ones, I think the con­cept just doesn’t work. It works more for the bot­tom line than for the peo­ple liv­ing in­side. And it works for a dom­i­nant cul­ture that is re­ally dis­abil­ity-pho­bic in a lot of ways.

I know there are some very tough ques­tions that need an­swer­ing for peo­ple who have deeply sig­nif­i­cant dis­abil­i­ties. But I still don’t think iso­la­tion is a rea­son­able al­ter­na­tive for any­one. MH: Most of your char­ac­ters are not like you— they have phys­i­cal, men­tal and in some cases psy­chi­atric dis­abil­i­ties. Is there a high cor­re­la­tion be­tween phys­i­cal and men­tal dis­abil­i­ties when it comes to which kids get in­sti­tu­tion­al­ized? Nuss­baum: It’s all over the map. When there are in­tel­lec­tual and psy­chi­atric con­di­tions, there is no un­der­stand­ing about what it means for that per­son’s abil­ity to learn or their per­son­hood. … I had a young woman work­ing for me as an as­sis­tant who went to a seg­re­gated school where they weren’t even taught the most ba­sic skills. When I asked her why they didn’t teach them any­thing, she said to me, ‘ Well, I’m re­tarded.’ She may have had a low I.Q., but it made me start think­ing about peo­ple whom I didn’t con­sider as smart as me. I was stunned to un­der­stand the bi­ases I had. Peo­ple with men­tal

dis­abil­i­ties can be very use­ful and en­gaged. MH: How did you do your re­search for the novel? Nuss­baum: A col­league turned me on to a law jour­nal study that in­cluded tes­ti­mony from par­ents and chil­dren and staff in­side of th­ese in­sti­tu­tional set­tings. The stuff was so brain-crack­ingly dif­fi­cult to com­pre­hend in its hor­ror. I started col­lect­ing ar­ti­cles that came into my e-mail ev­ery week from other staff at Ac­cess Liv­ing who were work­ing on a de­in­sti­tu­tion­al­iza­tion pro­ject that I was not a part of. They were do­ing some great work get­ting peo­ple out of th­ese nurs­ing homes.

The Govern­ment Ac­count­abil­ity Of­fice did a re­port on abuses of chil­dren in pub­lic schools where they dis­cov­ered that 90% of the re­ally bad abuse in pub­lic schools is aimed at kids with dis­abil­i­ties: kids be­ing duct-taped to the floors or walls, re­ally cre­atively sadis­tic things. There were con­gres­sional hear­ings. Some states were worse than oth­ers. MH: Did you visit any of th­ese in­sti­tu­tions? Nuss­baum: I would visit kids in places. They didn’t ap­pear abu­sive to me. They didn’t ap­pear to be that great, ei­ther. It’s a very high level of seg­re­ga­tion. Some of the kids were bussed over to a dis­abled kids-only high school, but that was closed six or seven years ago. Now, all of those kids are di­vided up and sent to ac­ces­si­ble schools, (but) all of the kids with dis­abil­i­ties would be off in sep­a­rate class­rooms, seg­re­gated from the rest of the school. … They had no spe­cial pro­grams for them. Even if the kid wanted to join the chess club, they couldn’t do that be­cause there was no late bus for them. MH: In the novel, you por­tray a fe­male re­cruiter who is given fi­nan­cial in­cen­tives by the pri­vate op­er­a­tor to in­sti­tu­tion­al­ize kids rather than keep them at home. Have you seen this in prac­tice? Nuss­baum: They have a huge in­cen­tive. Why would they con­tinue to op­er­ate th­ese toi­lets with state tax re­sources when it is much cheaper to let peo­ple live in­de­pen­dently? There’s a huge lobby against phas­ing them out—the nurs­ing home lobby. They think this is th­ese kids’ only al­ter­na­tive. I don’t think it is. MH: Early in the novel, there is an in­ci­dent in­volv­ing sex­ual abuse of a teenage res­i­dent by a staff aide. Was that based on an ac­tual re­port? Nuss­baum: I col­lected a lot of in­for­ma­tion. The sto­ries I read were har­row­ing. I didn’t even use in my novel any­thing close to the ac­tual things I read in news­pa­pers and other doc­u­ments. MH: But isn’t there also the po­ten­tial for abuse by home health aides that care for dis­abled kids when they are de­in­sti­tu­tion­al­ized? Nuss­baum: I hear more about fam­i­lies abus­ing kids, or ne­glect­ing kids that are de­pen­dent on them for get­ting out of bed, get­ting dressed. We’re a vul­ner­a­ble pop­u­la­tion. But I think it’s safer in the com­mu­nity than shut away in those places. Those places are some­thing some­one came up with a cou­ple of hun­dred years ago. Is that what we want? Ev­ery­body who looks nor­mal is free to walk around, and ev­ery­body else is shut away and re­ally in­vis­i­ble. That may be what a lot of peo­ple want. But it’s a com­plete vi­o­la­tion of hu­man rights.

Su­san Nuss­baum’s novel is gen­er­at­ing con­tro­versy among providers who care for those with dis­abil­i­ties.

Newspapers in English

Newspapers from USA

© PressReader. All rights reserved.