A Call to End the Label of Mental Retardation BY THE CENTER ON HUMAN POLICY, CHRISTI KASA-HENDRICKSON, CHRISTY ASHBY, EDWARD WILLARD, WILSON BUSWELL, ROB SHAFFNER and NICK HARMON nla retaration isan invented uemcssary sory about a lage sro of people Burton Blatt ‘Self Advocates Declare War on the ° Word” read the froot page of the January issue of The Rice (srwwihstiorg/leaders/theriot), a newsletter yritten by selfadvocates labeled swith developmental disabilities. “This provocative headline echoes the message from two leaders in the field of significant lsabilty. Both Blatt and Dy’wad (see Allard, Howard, Vorderes, & Wells, 1999; & ‘Taylor & Blatt, 1999) throughout their carcers led the eall 10 end the concept of Calling mental retard mental reaedation, and “always abusive” Blatt and Dybwad insisted that professionals recognize the experiences of people Jabeled with mental retardation fom a position of equity and, most importantly, common humanity understanding” Afier reading The Riot newsletter, the authors of this paper decided to begin a ‘conversation 10 call for the end of this label that serves only to dehumanize and limit opportunity. ‘The following article is the beginning of our campaign to spread the word to end the label of Mental Retardation, ‘The self-advocates’ message is stcong; See us for our abilities and strengths fr you will miss our, Label jars nor people. Challenging the Reality of Mental Retardation Mental Retardation traditionally refers to fan IQ measured by a standardized aptitude test, specifically an 1 less than 70, and perceived limitations in adapiive functioning, which refers to the person's ability to perform basic, “functional” ite tasks appropriate to their age andl culture, Performance on these standard ‘zed measures can lead to 2 number ‘being attached to a person and, in turn, the label of Mental Retardation. This is cleasly a psychometric, medicalized diagnosis, relying on the existence of stable construct of intellect oF intel gence, This presupposes thar there is such a thing as general intelligence that can be tested and measured, and that it has predictive validity with regard to the funure success of 2 person. ‘The concept of mental retardation, therefore is built upon the premise that intelligence oF competence is something that resides within a person, someching that can be assessed and evaluated; a tangible thing in which judgments ean be made about. However, neither intelligence nor retardation are things that are objectively knowable. They are, instead, ideas created by people to expkain very complex phe nomena, They ate created concepts. Mental Retardation is « social construction. In other words itis an idea that we, as a society, have created and through cultural habits have come to tteat as real; most often as a biological entity that is proven through science. Taylor & Bogdan (1994) remind us that, “Mental retardation is a defective concept—a concept conceived in ignorance” (p. 5) In is review of Blat’s 1999 book, I Search of the Promise Land, Biklen (2000) reminds the reader of important lessons that often go unheard. Blat recognized that mental retardation was and is “an invented disease” lat, 1999, p. 86). He called it “an untroe ‘and unnecessary story” deriving from “prejudiced inventions about certain people ‘who have wires loose or who read poorly (p. 86). His argument was that mental retardation is not real in the way that neurological impairment is real or blindness and illiterey are real or even that, “how ever nonrevealing and misinforming it may be, the 50 1Q is seal” (p. 86). Further, Blatt explained, mental retardation is “an untrue story” and, as such, is “always abusive” (p. 86). undermining the exedibility and authority Of those so labeled and of giving their futures over to professionals’ discretion. is abusive in the sense of its ‘The choice to continue to treat the label of ‘mental retardation as 4 biological reality is a moral choice, a choice with consequences for those who teecive the label and attempt to live with it Nothing Abour Us Without Us (Gee Charlton, 2000), the call of the disability ts movement, speaks to the importance ‘of voice and control over ones own life, As Blatt and Dywab have remind us, the dehumanization that accompanies the label ‘of mental retardation often places the person’ life in the hands of professionals. Shaffer, a co-author and self advocate is independent and in control of his life. He has graduated from high school and been in the work force for years. Shaffer lives ‘on his own, travels with fi nds and family, and works to support the mission of the Peak Parent Center. Shaffer supports the right for people with disabilities to guide their own lives, make their own choices, and most importantly be seen for their complesity as citizens (Biklen, 2000), ‘These are the qualities that have allowed hhim to achieve the rich life that he has. Shaffner is seen as being the agent of his ‘own life, making choices and moving his life forward. For too many people labeled with Mental Retardation, that sense of agency and self sctualization are not presumed, The ‘metaphor of retardation implies that the thinking of the individual is limited or slowed. Carrying that metaphor to the next possible and very dangerous conclusion, if the person's thinking how ean that person possibly be in the best position to make decisions about his or her life? Seeing someone through a lens of retardation and limitation threatens a shift in power and personal agency from the petson so labeled to those without such perceived limitations. These practices are a is retarded or slowed, Continued on ps 21 ‘TASH CONNECTIONS, NOVEMBER/BECEMBER 2006 hjA Call To End the Label of Mental Retardation Coie fr pe 20 threat to the freedoms and citizenship that all should rightfully enjoy A Chae with Couns Unfortunatly for the individuals 30 labeled, dhe concept of Mental Retardation has very seal and material consequences. While we have argued in the previous section that Mental Retataton i a social construction, an invented disease end an "untrue story, that does not prevent horiic things being done to people in its name. Members of TASH ate well avare of the damaging consequences historically for Individuals with this label, from isolation in segregated classrooms, to insttaionalza- tion and even Forced sterlization, However, even in circumstances seemingly less egregious, the label has additional conse quences It serves a very dangerous function. The label of mental retardation is niseading, a discon from understand ing the person for their humanness, Ta other words, pon exzning the label we lose the person. ‘The power of this label works as. lens, obseuring the person withthe label and hiding complexity. All of the individuals’ actions and characteristics are seen and interpreted through a lens of retardation and deficiency. Hayman (1998) in his book Smart Culture explains, “From one perceived inabliy we induce a general inferioriy; someone who doesn’t do well fon standardized tests becomes “Dum” or even “mentally retarded” and that means that nor only will they not become very good nuclear physicists, they aso won't become very good citizens, or parents or people” (p25. ‘The utilization of this metaphor (see Biklen 2001) has many consequences: © Assumed Incompetent © Restricted! Opportunity in School and Community © Lack of Meaningful Interesting Jastruc- tion Generally © Repetitive Demeaaiag Curricelum © Limited Opportunity to Learn Essential Literacy Skills © Disrespect © Community Banishment (© Treated Asa Child © People Talk About You in Front of You © increased Surveillance © Loss of Control and Power Over Own Life © Little opportunity to learn from mistakes “the opportunity to fil”) © Limited opportunity to interact and learn in natural social contests © People don’t get to know who you really are inside (personality, strengths, likes, dislikes) © People assume you have nothing important to say Willard, a co-author of this article, is Co. Director of the Life Going Far Project with TASH. He holds many responsibil ties that would never be associated with the Inbel of mental retardation. However, 2 Took back at his fle from past schooling reveals that Willard’s competence has been in question, and has shifted depending on where he went to school. Willard had the following to say about this label: “As with thousands of people with disabilities, we get this ‘wonderful diagno sis of mental retardation for two simple reasons. Fist, iis given when educators aze not able to find the individualized way that we learn this is their justification for a substandard education. Second, the label of retardation gives professionals the absolute license to treat us lke second class citizens. From kindergarten to the ninth grade, 1 attended a school located at children’s hhospital in New York. While this was a segregated school, the education was top notch. There was no question in ‘everybody's mind that I would be going to college. My education focused on me obtaining a four-year scholarship to a university, and IBM made a commitment to hiring me upon graduation. Well, at seventeen my father got transferred to ‘Texas, and I ended up finishing high school in a facility that was the complete opposite Of the school in New York I went from being a prime candidate for college, to being put ina basic skis class, And yes, wouldn't you know i, five months after tance to this facility, my parencs were told Thad mental retardation. Yeah, and si ‘me, said something about going to colere ‘one of my teachers. She looked me in the ‘eyes and said ‘thar’s laughable, Iwill tell tha joke to your other teachers.” For Willard, the label of mental retardati led to limitations being placed pon him and his future, Tf judgments of ability ‘were eliminated based on how people loo communicate, and perform we could beg to eliminate low expectations and see people for what they bring and what they can do, Icis for these reasons that People First organizations and other self advocacy ‘organizations are seeking to end the use o the label, A recent message ftom Self Advocates Becoming Empowered (SABE, wwwsabeusa org) states, “We will not put ‘up with the ‘? word..f you are working with me and for me, then do not disrespec me.” Self-Advocate led organizations are secking to end the understanding of peop! as retarded. “Down with the R word)” tea the latest edition oF Thr Rio, a self advocate magazine Self-Advocates who live with the label of ‘mental retardation are rejecting the retarded identity and insisting that we see ‘complexity and humanness. Ed Murphy, a man institutionalized and having a label of mental retardation explains, “Ie is very hat to go through life with a label. You have fight constantly. Retanded is just a word w use words like retarded because of & hhabit—just like going shopping every week and getting up in the morning. People are really ignorant. People consider themselve normal and pat stigma on people who aren't” (Taylor 8 Bogdaa, 1994), Itis time to change our habits and move toward a future without the damaging label of mental retardation. ‘This is nota eal for an acceptance of all people in spite of thei label of Mental Retardation, It isa call, ‘instead, for an eradication of the idea Contin on pas 2A Call to End the Label of Mental Retardation ‘Contnnd fm pag 21 The Ditorry of Haman is No Soll Mater (Linneman 2001, p. 3) Te would be inadequate and incons with the message from selfadvocates to simply replice Mental Retardation with other words like cognitive disability and inelleetnal challenges. Mental Retardation has been called many different terms ‘zoughout history: The following diagram highlights several examples of this shifting and evolving terminology. All of these ‘words have been used to indica als presumed to have limitations in incllec tual functioning — people who are not presumed t0 nature of the diagram points to the fact thae while the words change, we never ‘escape the meaning inherent in these ‘damaging terms, Eventually, even the most seemingly innocuous terms will mean the same as the most derogatory. The words are not the only problem. lividus “smact” ‘The eyclical Recently, the American Association on Mental Retardation changed its name to the “American Association on Tarellectual and Developmental Disabilities. While the switeh avay from the word retardation is ‘commendable, it does not solve the problem for very long, As Ferguson (1994) so aptly said “Tomorrow's playground insults are often foretold by today’s professional diagnoses” (Ferguson, 1994, p, 3), It won't be long before developmentally disabled, cognitively disabled, or iellecta- ally challenged means the same thing as retarded, with the sime damaging conse- «quences. What is needed is a shift in thinking - noc a shit in language. As long, as the professional community continues to rank people by perceived levels of this thing we call intelligence there will always be certain people who are on the borrom rungs. And. there will always be people denied opportunity on the basis on that ranking, A shift from retarded t0 cognitive disability leaves the eonstraction of intelligence ‘unquestioned. The human experiencers ‘complex. Notions of intelligence based on intellectual capacity need to be discarded. More complex ways of knowing intelligence need to be explored. Purther, people should not be judged by others’ perceptions of their “intelligence.” Ivisin fact very difficult, if not impossible, to ever fully know what someone else knows. As responsible citizens ‘we shoud embrace all people as part of our ‘communities and seek to understand how ‘each person can contribute thei strengths and talents Harmon, a co-author and a freshman in high school, wants people to know he is ‘excited abour school. He loves track, being with friends, and the Denver Broncos. Harmon wants people around him to recognize what he can do and the qualities he brings toa community. As Harmon ‘grows older he has plans. He wants 10 ‘wotk for the Broncos, have an apartment, and be with the people he loves, Harmon does not want a label such as mental retardation to get in the way of his education and goals for the future. Harmon insists that people see him for his strengths, Boswell, another article co-author, goes beyond frustration at the application of the Tabel and argues that the very idea of mental rerardation makes him furious ‘Boswell i interested in social justice issues and sees the elimination of mental retarda- tion centally linked to obtaining justice for people with disabilities, Buswell wrote the following quotes for his school newspaper: ‘© “People might join each other more if more people shared their lives with others” (© “Triends happen in school to bring life to learning” © “School dares a person to leara to be a friend.” “The equity and friendship that Buswell writes about are accomplished when we cach other for our humanness, strengths, and desirable qualities. As Biklen & Duchan (1994) explain, “A competence view of disability would hold that the most important life change For those misjudged as incompetent would be to have others view them as capable” We might start our ‘move away ftom mental retardation with a move toward a competence orientation of disability (Biklen, 2000). With this in m ‘we would take on a strength based approach by presuining competence and supporting people to make their own contributions ‘A victory in the dicabitity moseavent would be to uta get rid of the kabel mental raardation. We serves no purpase.” edward Willard Gomevents about this article may be sent to Chrits Keasa Hendrickson at crit endrickson(@uecced Refremes Allan, Mb, Howard, AML, Vorderer, LAP, ‘Wells A. (Eds). (1999), Ahead of bis time: Selected speecies of Gunner Dba, ‘Wishington DC: American Associaton on Mental Retardation. Biklen, D, (2000). Lessons from the margins, narrating mental retardation: A. review ess. 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