Dr. Diana Linn, NATIONAL FORUM JOURNALS, Dr. William Allan Kritsonis, Editor-in-Chief


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Dr. Diana Linn, NATIONAL FORUM JOURNALS, Dr. William Allan Kritsonis, Editor-in-Chief

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Dr. Diana Linn, NATIONAL FORUM JOURNALS, Dr. William Allan Kritsonis, Editor-in-Chief

  1. 1. NATIONAL FORUM OF MULTICULTURAL ISSUES JOURNALVOLUME 10, NUMBER 2, 2013SPONSORED BY THE TEXAS CHAPTER OF THE NATIONAL ASSOCIATION FORMULTICULTURAL EDUCATION24The Reason that Patrick was Sent: A Mexican American Talksabout her Son’s DisabilitiesDiana LinnAssistant Professor of Special EducationDepartment of Professional ProgramsCollege of EducationTexas A&M International UniversityLaredo, TX______________________________________________________________________________AbstractThis article explores Mrs.García‟s story, as she talks about her 26-year old son‟s severe physicaldisabilities.Mrs.García‟s narrative was analyzed using a holistic-content perspective. Severalthemes appeared intertwined throughout the narrative including culture, religion, indebtedness,and personal transformation. Mrs.Garcíacontinually tries to answer the question „why me?‟Although the question is never answered definitively, Mrs.García talks about the possibility ofher son being sent to her for a variety of reasons.______________________________________________________________________________“It is often by telling stories that educators… have come to understand the needs ofpersons with disabilities” (Pugach, 2001, p. 493). There are many stories to tell in the field ofspecial education. First, there are the stories from the students with disabilities themselves (e.g.Connor, 2009; Reid & Button, 1995). Also, there are the stories of the educators of students withdisabilities (Del Rosario, 2006; Jewett et al., 1998). There are even narratives of teachers withdisabilities teaching students with disabilities (Ferri, Keefe, & Gregg, 2001). Finally, there arethe stories from the parents of individuals with disabilities. Skinner, Bailey, Correa, andRodriguez (1999) introduced narrative as a vehicle for parents to tell stories about theirchildren‟s disabilities.The articles by Skinner and her colleagues (Skinner, Bailey, Correa, & Rodriguez, 1999;Skinner, Rodriguez, & Bailey, 1999; Skinner, Correa, Skinner, & Bailey, 2001) provided theframework and points for discussion for this narrative about how one Mexican Americanconstructs her identity as the mother of an individual with severe physical disabilities.Specifically, the purpose of this study was to examine the narrative of a Mexican Americanmother of an individual with severe physical disabilities to determine how self is constructed inrelation to a child with special needs. Additionally, the author was interested in comparing andcontrasting themes found within this mother‟s narrative with the themes found in the Skinnerarticles.In discussing emerging themes of the Latina mothers‟ narratives, Skinner, Bailey, Correa,and Rodriguez (1999) noted that the majority of the mothers interpreted their experience with a
  2. 2. DIANA LINN25child who has disability as something that caused them to become better mothers and betterpersons. Within the theme of being a better mother, the participants talked at length about theirstruggles, sacrifices, roles, and feelings as mothers of a child with a disability, but they did so topresent themselves as a good mother. Mothers related exact and detailed descriptions about thethings they did for their child, how they worked to locate services for their child, and how theydevoted themselves to care for the child full time. In short, mothers related all they had done forthe sake of their child.The authors note that while the theme of the dedicated, sacrificing, and sometimessuffering mother is a powerful theme found in many cultures; this identity in these Latinas maybe shaped in part by Catholicism, where those who suffer and sacrifice are seen as morallyvirtuous. This “relationship between one‟s identity as a good mother, the child with disabilities,and God” (Skinner, Bailey, Correa, & Rodriguez, 1999, p. 487) was apparent in many of thenarratives. Additionally, many mothers said that their child was a reward or blessing given tothem by God because they were found worthy of receiving and raising a child with a disability orbecause God wanted them to become better persons and/or mothers through this experience.Another important theme in these mothers‟ narratives was that of personaltransformation; how the experience of having a child with disabilities changed them and theirlives. Mothers maintained that they became more compassionate, understanding, and strongerpersons. They also said that they matured and became closer to God. Furthermore, theirnarratives included descriptions of the self before the child‟s birth and the self they had becomebecause of having a child with a disability (Skinner, Bailey, Correa, and Rodriguez, 1999).MethodologyThe informal conversational interview (Patton, 2002) was used in this study. Thistechnique was considered appropriate for eliciting the narrative in this study because it is “themost open-ended approach to interviewing” and it because it “offers maximum flexibility topursue information in whatever direction appears to be appropriate” (Patton, 2002, p. 342). Theentire interview was tape-recorded and transcribed.Mrs. García, a Mexican American in her late fifties, who has a twenty-six year old sonwith severe physical disabilities, was interviewed for this study. First, Mrs. García was asked todescribe her son‟s disabilities. She required no prompt after that and began to describe how herfamily had changed and then how she had changed as a result of having a son with disabilities.From there she described the role that religion played in her life and how that related to the factthat her son had disabilities. The first prompt in the interview came after approximately thirteenminutes when she said “your perspective on life changes; it‟s completely different.” Mrs. Garcíawas asked how it had changed for her. The second and final prompt occurred after another fiveminutes had passed. She seemed to be coming to the end of her narration and so was asked if shehad finally answered the question, “Why me?” Excerpts from the interview are quoted in thefollowing analysis, results, discussion and conclusions.Analysis and ResultsMrs. García‟s narrative fits Linde‟s (1993) two criteria for including a narrative in a life
  3. 3. DIANA LINN26story. First, Mrs. García‟s account includes an “evaluative point.” It “illustrates something aboutthe character of the speaker” (p. 21). As the reader will soon see, Mrs. García‟s narrativeexcludes extensive information about the kind of person she is because of having a son withdisabilities. Secondly, Mrs. García‟s narrative has “extended reportability.” Indeed, the story ofher son‟s disabilities is unusual and “run[s] counter to expectations” (p. 22).I employed holistic-content perspective (Lieblich, Tuval-Mashiach, &Zilber, 1998)during the reading, coding and analyzing of Mrs. García‟s narrative. Lieblich and her colleaguessuggested “two approaches to reading life stories from a content-holistic point of view” (p. 87).First, I examined Mrs. García‟s story for “general themes and emerging foci.” These themesinclude the intersections of culture, religion, and superstition, indebtedness, and personaltransformation. The themes are repeated often and intertwined throughout the narrative. Afterusing this first approach, I used “specific segment[s] of the text …to shed light on the story as awhole” (p. 87). I did this because I considered the description of Mrs. García‟s son‟s disabilities,as well as some of aforementioned themes, as preludes to the real substance of the narrative: whyshe has a son with disabilities. Various answers to the question “why me?” can be foundimmediately in the introduction and then repeatedly throughout Mrs. García‟s narrative.Theme: Intersections of Culture, Religion, and SuperstitionLinde (1993) suggested that both the content and form of life stories is a product of aperson‟s culture. Mrs. García‟s first reference to culture is when she speaks of having a son aftergiving birth to three girls. “Hispanic men are very traditional, they want a son. For what reason Ido not know.” Additionally, Mrs. Garcíaspeaks of the marriages she has seen break up becauseof the inability of some Hispanic males to accept a child with disabilities. For example, Salas-Provance, Erickson, and Reed (2002) stated, “machismo (or maleness, virility) may contribute tothe denial of a disability” (p. 152). One explanation for machismo contributing to denial of adisability is that machismo includes the responsibility of being a strong protector of family (Hall&Barongan, 2002). Once a disability occurs, there is often not much that can be done to reversethe disability. Because machismo includes responsibility as a strong protector of the family, itcould be theorized that because disability frequently occurs within the womb, Mexican Americanmen feel helpless in dealing with disability (Hall &Barongan, 2002). Regarding this issue, Mrs.Garcíanoted:I think in Hispanic families when a child with abnormalities is born to the family many,many families break up because Hispanic fathers, it is very hard to understand and toaccept that I am the man who created this child and sometimes the Hispanic men are veryproud people and they cannot accept that and I‟ve seen a lot of marriages that break upbecause of that.The themes of culture, religion, and superstition found in the narrative are intertwined ina story within a story (Riessman, 1993) when Mrs. García relates the story about how her sonwas named:I one day walked into a department store which they sold uh children‟s wear and wesaw these two old women who had never gotten married and they were very friendly tome and they were very nice people and she said to me „Mrs. García, do you want a little
  4. 4. DIANA LINN27boy?‟ And I said, „Of course!‟ And she said, „Do you have a Bible at home?‟ And I said,„Yes.‟ And she said, „When you go home, open the Bible and if the Bible speaks of aman, then you‟re going to have a little boy and if the Bible speaks of a woman, thenyou‟re going to have another little girl.‟ Well, when you‟re young and I don‟t know, youbelieve you know the Hispanic people are very superstitious so I came home right awayand of course I have a Bible at the front door to my house and I opened the Bible and theBible story was David and Goliath, it had to do with David. My husband has neverwanted the children to have two names. He only wanted one name and that was it. Well,the day before Patrick was born, Patrick was induced because his date went by and ofcourse, I knew exactly what date Patrick was going to be born because he was induced, Ihad a dream and in that dream my little boy dies because I had not named him Patrick, Imean David. So the day before I went to the hospital I told my husband, you know, Ihave to tell you something I did this and it spoke of a child and of a uh a little boy, of aman named David, and I had a dream a few nights ago and I said I have to tell you thatbecause we had already picked out the name Patrick. Patrick, when our firstborn wasgoing to come, we had two names, Deborah and Patrick and I had three little girls and sowe were still with the name of Patrick. And I said and I have to tell you this because Idon‟t want my child to die and he said don‟t worry about it; we‟ll name our son PatrickDavid. So his name is Patrick David.Several elements of the Hispanic culture are evident in this part of the narrative. First,spinsters are notorious for giving advice to married women, especially about pregnancies,children, and child rearing. Secondly, most Hispanic families keep an open Bible on a table inthe entrance hall of their home. Thirdly, Hispanics tend to be superstitious, as Mrs. García admitsto being, especially when it comes to advice and dream interpretation. It is also noteworthy thatboth the advice and the dream have religious overtones.Theme: IndebtednessThe theme of indebtedness is apparent in the narrative and takes two forms. First, Mrs.García speaks of strangers helping her when Patrick was in the hospital.When Patrick was four and a half years old we took him to Children‟s Hospital in Bostonand I had to spend many months with him over there. I met a lot of people who helpedme with no condition [probably a direct translation from the Spanish „sin condiciones‟which means „with no strings attached‟], that give me things that you don‟t expect, theywere not family. And they were very nice to me. They were very hospitable. Um theytreated me as if I was their own family. I never expected that from another person. Yet, Inever knew these people. And I would probably never see them again in my life. So Ihave to do that for somebody else because if those people did it to me, and never theywere not expecting anything in return and they were probably never going to see meagain so that‟s my attitude now.Secondly, Mrs. García also speaks of giving something back to the community to parentsof children with disabilities because of her experiences with Patrick, another type ofindebtedness:
  5. 5. DIANA LINN28I wish that I could, you know, one day be able to help somebody else. I havespoken to several people who have children with physically challenges or whateverbut my greatest thing that I want to do when I become older, when I retire, I want tospend time at the hospital, at the pediatric department because when I was in thehospital I found out that a lot of parents, mothers, could not stay with their childrenbecause they had to work. They couldn‟t afford to and a lot of kids were verylonely and so that is one of my things that I want to do when I retire.Research suggests that women who work in disability related fields find theseexperiences enriching and rewarding (Ryan&Runswick-Cole, 2008). Mrs. García brings up avalid point in her narrative: many parents do not have the resources, either time or money, to staywith their children. Mothers, such as Mrs. García, have valuable skills, expertise and knowledgethat other mothers of children with disabilities can profit from (Ryan &Runswick-Cole, 2008).Theme: Personal TransformationThe theme of personal transformation, how Mrs. García has changed as a result of havinga child with disabilities, is intertwined with the answers to the question, “Why me?” Throughouther narrative, Mrs. García continually comes back to the issue of why she has a child withdisabilities. Yes, curiously, the question is never concretely or completely answered. She endsmany sections of her discourse with the clause, “if that was the reason that Patrick was sent,”giving the idea that there are many and multiple reasons she feels that Patrick was sent to her.The following excerpts from different parts of the narrative show how Mrs. García addresses thequestion of why she has a child with disabilities. Firstly, she surmises it may be because ofthings that happened before or during her pregnancy.Why? The medical reasons: We were told that Patrick has a, it‟s a genetic problemthat it goes back several generations. And uh of course at that time I went back inmy mind and I thought that could have happened. One of the reasons that I thoughtthat sticks in my mind was that I had been exposed to measles. I was also takingbirth control pills and I became pregnant right away. And uh I had also lost fortypounds cause I had gotten on a diet. So out of those things I think um contributed toPatrick being um you know born with physical handicaps.Mrs. García also suggests that religion and her faith may have played a part:Why? To bring more faith or to justify the faith I’ve acquired: But at that time I think thatthrough one of the sisters from (local Catholic elementary school where she works) Ibecame very friendly with her and she introduced me to our Virgin Mary. I became very,I, I acquired a lot of faith from her. I put my problems in her hands, and we did the bestwe could. Had it not been for the faith that I had with my God I don‟t think that I wouldhave never made it. I‟ll never know the reason. And as I told you had it not been for thefaith that I acquired before Patrick was born because sometimes God works in strangeways. Uh, I‟ll never know. God was preparing me for a big thing to come.Another reason she gave had to do with her character traits. According to McLauglin,
  6. 6. DIANA LINN29Goodley, Clavering, and Fisher (2008), the work mothers of individuals with disabilities do canlead to feelings of accomplishments. This is evidenced in the following part of the narrative:Why? To make me a better/special/wiser/lucky person: Um, I am a better personbecause of Patrick. I think that I am also very special person because I have becomea wiser person. I am also very lucky because Patrick does not have any mentaldisabilities.Why? Because I am capable: I think that God send him to me because He‟s lookingdown from Heaven and saying um this lady will take very good care of him and Iknow that uh she won‟t give up, which we have not.Why? To bring happiness: And we were very happy when Patrick was born. Um,we‟ll never know why Patrick was sent to our family, but for whatever reason hehas brought joy, happiness, love.Caring for a child with disabilities leads to broad changes in a family‟s patterns of lifeand how they find that life enhanced (McLaughlin, Goodley, Clavering& Fisher, 2008). Inanswering the question of “why”, Mrs. Garcíatalked about how having and caring for Patrick hadchanged many aspects of her life:Why? To bring more appreciation for my husband and more family unity: Um, myhusband is, is very, very good. I am very grateful for him and to have him becausePatrick has brought this family together. He changed our whole family; we had to dealwith whatever we had and to help each other out.Why? To change my perspective on life: Everybody thinks, it‟ll never happen to meand then it does and then uh your perspective on life changes; it‟s completelydifferent. (Interviewer: How did it change for you?) For me? It changed for mebecause um I saw things very, very different. When we, when we uh movedhere to the north side I was very interested in having a beautiful house, a new houseand when Patrick was born I really didn‟t care.Why? To tell me how to live my life: I help whoever needs the help and I don‟tcare who they are, or if they have any money, or it‟s going to bring me, if I helpthese people that means that she‟s going to help me in doing something else. Inever expect them to because I‟m doing it because of the kindness of my heart;because I think that it should be done and somebody else is going to help me andthat‟s the chain. That‟s the chain of life you know uh if we take care of each othermore we wouldn‟t have so many bad people in the world.DiscussionMrs. García‟s narrative parallels the narratives in Skinner et al. in several ways. Thepersona of the sacrificing mother is apparent in Mrs. García‟s narrative. She speaks of the manysacrifices made by her, her husband, and her daughters. She states, “My life revolves around my
  7. 7. DIANA LINN30son, my husband‟s does too.” This reflects the Hispanics‟ protective and cohesive family system(Graf, Blankenship, Sanchez, & Carlson (2007). Also, like the women in the Skinner study, Mrs.García feels that God sent her son to her because she was capable of taking care of him andbecause she had the faith required to see her through the situation.The second of the Skinner and her colleagues‟ themes, personal transformation, is alsopresent in Mrs. García‟s narrative. Mrs. García feels she is a better person because of Patrick.Specifically, she sees herself as a wiser, more grateful, and a more helpful person because shehas a son with disabilities. In addition, material things are now not as important to her as theywere before Patrick was born. The following except shows how Patrick has transformed her.But not everybody thinks that. [That they should help other people] Perhaps in mysituation it took Patrick to think like I do now. And if that is the reason why Patrick cameto our family I am very thankful. I don‟t, don‟t um wish this on anybody, but it makesyou a better person and if Patrick was sent for that reason, then I am thankful.ConclusionMrs. García tells a captivating story of her son‟s disability—from the moment he wasborn to his present life, which finds him employed as support personnel in a computer lab at alocal school. The transcription of the narrative provided rich descriptions of the themes ofculture, religion, superstition, indebtedness, and personal transformation interwoven throughoutthe narrative. Also interconnected throughout Mrs. García‟s narrative was her attempt to try andmake sense of why she gave birth to a son with severe physical disabilities. Stories like Mrs.García‟s help people who work with students with disabilities understand how a mother may tryand make sense of her special reasons for having a son with a disability.ReferencesConnor, D. J. (2009).Creating cartoons as representation: Visual narratives of college studentswith learning disabilities.Educational Media International, 46(3), 185-205.Del Rosario, B. (2006). Narrative study of a high school English teacher‟s beliefs about teachingstudents identified as having a disability. International Journal of inclusive Education,10(6), 645-655.Ferri, B. A. Keefe, C. H., & Gregg, N. (2001). Teachers with learning disabilities: A view fromboth sides of the desk. Journal of Learning Disabilities, 34(1), 22-32.Graf, N. M., Blankenship, C. J., Sanchez, G.,& Carlson, R. (2007).Living of the line: Mexicanand Mexican American attitudes toward disability.Rehabilitation Counseling Bulletin,50(3), 153-165.Hall, G. C., &Barongan, C. (2002).Multicultural psychology. Upper Saddle River, NJ: Pearson.Jewett, J., Tertell, L., King-Taylor, M., Parker, D., Tertell, L., & Orr, M. (1998). Four earlychildhood teachers reflect on helping children with special needs make the transition tokindergarten. Elementary School Journal, 98(4), 329-338.Linde, C. (1993). Life stories: The creation of coherence. New York, NY: Oxford UniversityPress.
  8. 8. DIANA LINN31Lieblich, A., Tuval-Mashiach, R., &Zilber, T. (1998).Narrative research: Reading, analysisand interpretation (Applied Social Research Series). Thousand Oaks, CA: Sage.McLaughlin, J., Goodley, D., Clavering, E., &Fisher, P. (2008).Families raising disabledchildren: Enabling care and social justice. New York, NY: Palgrave Macmillan.Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand oaks,CA: Sage.Pugach, M. C. (2001). The stories we choose to tell: Fulfilling the promise of qualitative researchfor special education. Exceptional Children, 67(4), 439-453.Reid, D. K., & Button, L. J. (1995). Anna‟s story: Narratives of personal experience about beinglabeled learning disabled. Journal of Learning Disabilities, 28(10), 602-615.Riessman, C. K. (1993) Narrative analysis. Thousand Oaks, CA: Sage.Ryan, S., &Runswick-Cole, K. (2008). Repositioning mothers: Mothers, disabled children anddisability studies. Disability and Society, 23(3), 199-210.Salas-Provance, M., Erickson, J. G.,& Reed, J. (2002). Disabilities as viewed by four generationsof one Hispanic family. American Journal of Speech-Language Pathology, 11(2), 151-162.Skinner, D., Bailey, D. B., Correa, V.,& Rodriguez, P. (1999). Narrating self and disability:Latino mothers‟ construction of identities vis-à-vis their child with special needs.Exceptional Children, 65(4), 481-495.Skinner, D., Correa, V., Skinner, M., & Bailey, D. B. (2001).Role of religion in the lives ofLatino families of young children with developmental delays.American Journal onMental Retardation, 106(4), 297-313.Skinner, D., Rodriguez, P., & Bailey, D. B. (1999).Qualitative analysis of Latino parents‟religious interpretations of their child‟s disability.Journal of Early Intervention, 22(4),271-285.