How is life different for someone who grows up with a sibling who has mental retardation? In this phenomenological case study, I profile the life experiences of a 39-year-old woman as sibling to a 35-year-old man with Down syndrome, using her own words as she explored her sibling experience and how this relationship shaped her identity, experiences, and life choices. Emerging themes, including her self-perception and perception of family members, her identity formation, and the impact of the experience are discussed. A number of possible variables for future quantitative research are suggested based on her experiences, including increased empathy in typically developing siblings and the sibling with disability as a barometer of other people's traits and their impact on the formation of other significant relationships.
Would you be the same person if your life has been shared with a sibling who has intellectual disabilities? A person's life is colored by their family dynamics, but how is life different for someone who grows up alongside a person with mental retardation? How does living with such a sibling shape one's identity, experiences, and the life one forms in the future? My aim here is to enhance understanding of the sibling experience. In the past 4 decades, there has been much research on siblings of individuals with mental retardation, but how does one come to grasp the lived experience of being a brother or sister of a person with mental retardation?
In addressing these issues, one may take different approaches. Modern positivist researchers support the approach of understanding and solving life's problems through use of the objective, truth-seeking, quantitative methodology of the scientific method. This philosophy maintains that through the scientific method, and its frequent categorical analysis, a single truth will result, creating better understanding and superior interventions for life's problems (Danforth, 1997)—in other words, better living through better science. In contrast, postmodern researchers believe that the notion of human knowledge is continually growing and moving forward in time towards perfection is a fable (Danforth, 1997). They maintain that the scientific method and its tendency to categorize has led to labeling and stigmatization of people with disabilities (Angrosino, 1998; Banks, 2003; Bochner & Ellis, 1996; Smith, 2001b). They also believe that social scientists would be more likely to create better understanding and successful interventions through the use of human relationships, conversations, and qualitative methods (Danforth, 1997; Gillman, Swain, & Heyman, 1997; Smith, 2001b).
There is considerable research in which investigators have used quantitative methods to demonstrate that all family members are affected in different ways and in varying degrees, positive and negative, by the presence of a family member who has an intellectual disability (Lynch, Fay, Funk, & Nagel, 1993; see Orsmond & Seltzer, 2000, and Rossiter & Sharpe, 2001, for a review of these studies). Some of this quantitative research contains contradictory findings, which are often difficult to reconcile within the single-truth scientific method. When investigators employ qualitative methods, inconsistencies and ambiguities need not be explained but, rather, are understood as part of the complexity of individual subjective experience. Qualitative research methods are complex because they center on the emotional life and perspective of a single individual. These methods evoke feelings as well as thoughts in readers that may cause discomfort (Bochner & Ellis, 1996). The aim of all qualitative researchers is exploration in order to understand, not solution or truth (Ellis & Flaherty, 1992). Because exploration for understanding was my aim in this study, a qualitative methodology seemed most appropriate.
Another methodological issue to consider is whether to explore the experience from the perspective of a child or an adult. Many qualitative investigators have studied typically developing siblings' experience during childhood (Featherstone, 1980; Grossman, 1972; Hand, Trewby, & Reid, 1994; Harry, Day, & Quist, 1998; Itzkowitz, 1995; Powell & Gallagher, 1993; San Martino & Newman, 1974; Taylor, Bogdan, & Lutfiyya, 1995). In examining the experience from an adult sibling's perspective, we might gain insight into the effect on an individual's entire life, not only their childhood. Because adults generally possess greater self-knowledge, skills, and abilities than do children or adolescents, they are often able to reflect upon formative experiences with a fuller understanding of how having a sibling with mental retardation influenced and had an impact upon the context of their own development throughout childhood and adulthood.
Another consideration is which qualitative method will yield the richest data on the sibling experience? A variety of qualitative research methods exist (Creswell, 1997; Taylor & Bogdan, 1998) and have been used to study people with mental retardation and their families. These methods include ethnographic studies (Angrosino, 1998; Smith, 1999; Taylor, 2000), subjective participant observation (Ronai, 1996, 1997), poetry (Josephson, 1997; Smith, 2001a, 2001b), and phenomenological studies (Bogdan & Taylor, 1994). The method I chose for the present paper was the phenomenological case study (Van Manen, 1990), which allows researchers to describe a phenomenon without interpretation (Ashworth, 2003). It is appropriate for understanding a phenomenon from the inside by attempting to enter into the life of one person from his or her perspective. The participant's subjective experience becomes the object of study (Ronai, 1997). For example, what does it feel like to have insomnia (Copen, 1993)? What is the nature of the experience of guilt (Yoder, 1990)? My specific aim in this case study was to enter into the lifeworld of an adult who grew up with a person who had mental retardation in order to understand the experience and its impact on that individual.
I made no hypothesis regarding the nature of the sibling's lived experience, and no generalizations can be made from such a case study. However, a phenomenological case study does embody rich, descriptive data that may provide insight into variables that are suitable for future quantitative investigation (Taylor & Bogdan, 1998; Taylor, Bogdan, & Racino, 1991). Furthermore, the present study may provide valuable information to siblings, parents, and professionals who work with these families. This case study presents a detailed, subjective picture of the life of a single individual and how her sense of self, life, and choices were impacted by her sibling experience.
The participant was a 39-year-old woman of Puerto Rican and Italian descent. She was recruited through a nonprofit agency in New York City that provides support and assistance to persons with mental retardation and their families. The agency mailed letters to known siblings, describing the study and providing stamped return envelopes addressed to the researcher. Over 20 responses were received and 8 individuals were interviewed. The sibling profiled in the present study was chosen because she was the first of the 8 to be interviewed whose sibling experience was also an integral part of her identity formation. Three interviews were conducted at the agency once a week for 3 weeks, each approximately 90 minutes in duration and audiotaped.
Phenomenological interviewing normally features three interviews (Seidman, 1991), each with a distinct purpose. The initial interview is focused on the individual's life history, and the interviewer attempts to establish the context of the participant's experience. The family's structure and the individual's place as a member of the family, including the participant's relationship with others (i.e., siblings, parents, friends, and intimate partners are explored). In the second interview details of the specific experience under investigation are discussed. During this session, the participant provides as much detail as possible about his or her experience as a sibling to a brother or sister with mental retardation. In the final interview the participants are asked to reflect on the meaning of their experience and whether or not it has impacted on their life and choices.
In the present study, the purpose of the first two interviews was to assist the participant in discerning the impact and meaning sought in the final interview. I created Interview questions based on Seidman's (1991) conception of the unique purpose of each interview session. These questions provided structure to the sessions and, when appropriate, I explored responses with additional probes.
In the data analysis I merged the approaches of Seidman (1991) and Moustakas (1994). The initial step was to remove all of the interviewer's questions and review the remaining text to omit redundant material. Every significant statement and story related was separated and placed within one of the emerging themes. The final step was the creation of a case study profile, which was composed entirely of the participant's words. The rationale for this is that it allows readers to feel, think about, and possibly empathize with the sibling experience first-hand.
The participant, Anna, was 4.5 years old and her brother John was 6.5 years old when their sibling Daniel, who had Down syndrome, was born.
Anna's Lived Experience
My earliest memory of Daniel, I was totally annoyed with my parents that they brought home a boy because I had specifically instructed them to bring home a girl, but then I saw him [and] I just fell in love. My parents went to great lengths not to hide things. [They] told us about Daniel, that God picked us to send the special baby because we could take care of him. I remember, it didn't sound bad [but] my mom was crying and she wasn't a crier. And so I looked to my dad and he wasn't smiling and he's a smile person, so I knew by their body language that this was a bad thing. My older brother [John], when I asked him if he thought it was really bad afterwards said, “No, it's nothing.” I knew something was wrong. I was more concerned about them [my parents] than I was about Daniel because he just was this perfect little baby. I was determined that we were going to fix him. We were going to take action. We'd go to the store and buy books and read all about it and he was going to start to go to school because he obviously needed a head start. So I was comforted by the fact that there was a plan. A [plan] to maximize his developmental potential, which is the phrase that everybody always used. I didn't understand what it meant but I knew that it was important, so I would ask all of the time if everything that we were doing was maximizing his developmental potential. My mom got on the phone immediately [and] said, “There's got to be a place where kids like this get stuff and let's find it.” In retrospect, I made it pretty difficult for my parents. I insisted on going to every doctor's appointment and every evaluation because I wanted to know what was going on and I wanted them to explain everything to me.
There was a lot of medical illness in my family. He [Daniel] and my mom were in and out of the hospital, like a revolving door. My dad and I were probably his most consistent primary caregivers because my mom was so ill. [When I was age 5] the first thing that I would do when I got up in the morning was go look at Daniel's crib, make sure that he's okay, take him out even before I went to school [and] got dressed. When he was little, we had a schedule that everybody [followed] what we learned in our intervention program, stretching, range of motion and strengthening activities. I was extremely outgoing. I pretty much directed the sessions. John was involved to a much lesser extent.
I brought him to school for show and tell and said, “This is my brother and he has Down syndrome and it's a genetic disorder and it happens at the moment of conception.” By the third grade, I was pretty well versed. And everybody in my class knew more or less. Within a half an hour of [my] meeting somebody, they would know he was there. I would make it a point that everybody had to meet him and sort of pass his test before I would continue to have a relationship with them.
When I was 10, Daniel's heart condition became a life or death emergency. He was [in the hospital] 3½ months. I felt fragile. I was frustrated because I couldn't see him. I was just totally consumed with worry because when someone that didn't know him was taking care of him, [I thought] they wouldn't understand what he needed or wanted [or] be able to communicate with him. So to see him was traumatic; I would be hysterical; I was just terrified. I didn't sleep that whole time. I'm a lifelong insomniac; I think it probably started around then because I would just lie in bed and think, “What if he's cold? Or what if he's hungry? And nobody knows, he can't tell them.”
He went through a period of about four or five years when he was really aggressive to the point where he was medicated. He would be rubbing your cheek and all of a sudden smack you. You would have his handprint on your face. He started [at age] six or seven. I would say, “You need to stop this.” And then he would come over and put his arm around me and say, “Oh, honey, I sowwy.” He [John] would be much more frustrated when Danny would hit him or anybody else. He wouldn't want his friends to be around if Danny was having hitting episodes [and] if they were at our house, they were in the basement and Danny was upstairs. My friends were there and if Danny smacked them, “Well, this is the price of being my friend, sometimes Danny hits people that are here. What are you going to do?” [But] John was horrified and he would report the hitting behavior to my parents.
[Danny] lives in a residence upstate that's run by a hospital. My mother found it and we went through three or four months of showing up there totally unannounced to make sure that this was an okay place. It was very much a family decision; she drove it, but we all sat and talked about the pros and cons of it. She [mom] would be in the hospital for two, three months at a time; he was just really suffering and miserable. He'd become very withdrawn. He would act out and become physically aggressive. I think my mom knew that she was going to die relatively young because she was really sick and wanted Daniel to be at a place where he'd be settled. At the time, he [John] would say to me, “Look, I know it sucks but Danny's got to go. It's the best thing for him and we'll learn to live with it.” I thought to myself, “Oh, you vile stinking creature, you know, how could you be so cold.”
I was traumatized. Ultimately, he went there and we couldn't see him for three weeks. We would drive up there every day [and] hide behind the barn so we saw him for the four to five seconds it took him to come out of the van and walk into the house. Eventually, we took him home every weekend. When he first moved, we had schedules. We would get up in the night [and] take him to the bathroom. For months, I would wake up at my scheduled time and I'd go to his room and he wasn't there and [I'd] cry myself to sleep.
My mom was a dynamo. My mom probably worked more doing agency stuff than if she had a job between board meetings and parent meetings and membership meetings and committee meetings. She had a whole bunch of different things wrong with her [spinal surgery, derminaneuralgia, and multiple brain tumors and] she really suffered. She had brain surgery when I was 14, my first year of high school, and she planned this huge dinner dance from the hospital with her head in all these bandages. She was on the phone from her hospital room planning these events with the florist and the caterer and orchestra. She was [a] planner [but] flexibility was not her strong point. Daniel gave my mom an outlet because she was a very intelligent woman and she was limited at a young age as far as career opportunity.
My mom and I had sort of a love hate/kind of thing. While I'm nowhere near as powerful and forceful as she was, I have some of her personality traits and I think we used to clash because of it. She viewed him as her sick child, which was a constant source of conflict between us because I would say, “He's not sick, he's just retarded.” And she would describe him as “my sick boy” and it would drive me absolutely crazy. “Poor Daniel, poor me, because I have this sick boy” kind of thing. She didn't say it [poor me, but] that's how I perceived it. I was furious; I felt Daniel was the greatest thing in the whole world and so I would say to her, “Mom, you're so negative. He's sick now because he has a cold but Down syndrome is not a sickness. It's a condition.” We would have these semantic wars as we were washing dishes. I didn't like the light she cast on who he was; she focused very much on what he couldn't do and was concerned with infantilizing him. And I would argue with her about the way he was dressed. I would argue, “He doesn't need any more of an advertisement that he has Down syndrome, it's obvious enough, there's no reason to dress him like he's going to church on Sunday morning when all he's doing is going out in the backyard to play.”
I probably wasn't as patient with her as I could have been. She would say to me, “Don't teach Daniel how to open the car door because if he can't get out of a car unless somebody opens the door for him, then I know he's safe; don't let him use a knife because he might cut himself.” [I'd say] “Yeah, but if we teach him how to do it correctly, then he'll be able to eat without needing somebody to cut his food for him.” So I would get annoyed because she didn't understand that he needed to be as independent as he could be. I still don't think I understand how traumatic it was to her. It didn't happen so easily for my mom; she gave birth and created this less than perfect being. Because she thought she was perfect, so ordered, and neat, and organized. How could this come and disorder [her] whole world. I used to think when I was a kid, in a very Catholic household, that God doesn't give you anything that you can't handle. And I would say to my dad sometimes, “I think He didn't think about Mommy because she really can't handle this.”
My dad is the greatest. He's very calm, soft, and quiet. So they were a really good mix. He's extremely supportive, he was really the buffer between me and my mom and my mom and everybody. One time I actually punched a kid [who said], “What's wrong with him?” I was launching through an explanation and he said, “Oh, so he's like a fuckin' retard.” And I just hauled off and I belted him. He was bleeding from the mouth. I was horrified. I went home and I told my dad and he said, “Do you want to talk about it? Do you want to go look for the kid and say anything to him? [and] What would make you feel better about what you did?” Clearly, my mother was [different]. He [dad] said to me, “Don't tell your Mom now.” There was sort of a running conspiracy, “Let's tell your Mom about this later.” It was to not upset, not only her but just our whole household. Because she would go on a tangent for something like days.
Danny's pretty much the light of my dad's life, still. But he was different than my mom, it was very clear that she was sacrificing because she had this sick kid and [she thought], “Woe is me, this is my lot in life.” She had this martyr thing going on. My dad was like, “Wow, how lucky are we that we have him.” He views Daniel as a gift and it's our job to make his life as beautiful as we can while he's here. My parents' relationship really seemed to work for them. I often thought when I was growing up, “They really love each other but anyone else would have killed her.” She was a difficult person.
I've always disputed the IQ tests that say he [Daniel] is … profoundly retarded, 18 [IQ]. He's incredibly wise. Danny is progressively someplace between 18 months and two years old. He's extremely social and he's really good at letting you know what he wants. No, he can't read or handle change. He really needs 24-hour supervision. He can feed himself and shower and those kinds of things with some supervision. [Unsupervised] he'll eat the entire apple pie. Doesn't have a lot of regulation going on. He doesn't know about traffic and cars. He has a fair vocabulary. I think we have conversations.
When my mom died, I went up to his residence and I spoke [to his] whole team, the psychologist, the social worker, the residence manager, and his teacher, we agreed to not mention her until Daniel brought her up. It happened actually seven months later. He said to me one day, “Honey, Mommy's gone.” He doesn't know about dead, alive. He thinks the cemetery is a park. But he knows “gone” because if somebody worked in the residence and then they left, he would say, “That person is gone.” So I said, “Yeah, Mommy's gone.” And he said, “I'm very sad, hug me.” And I said, “Okay.” And then for a long time, if he saw her picture or something, he would kind of get all teary eyed.
There was some sort of realization I think from a very early age that I was different from all the other granddaughters. [The extended family] used to call me the professor. I loved school. And, when I finished college, they said, “You' re going to keep going? Didn't you learn enough?” I spent a year traveling back and forth from New York to Copenhagen [where] I received my masters in Special Education. I wanted to go to the place where I thought people with disabilities were more assimilated into the society. Living in Denmark was great. He [Daniel] thought I was at sleep away camp. Because he's been to camp, and he would say to my dad, “Call her up. Call camp is over. Aw, come home.” And, of course, my dad wouldn't do this because he knew I would hop on a plane and come home. But when it got to the point where I actually had an offer to do a doctorate program in Copenhagen, [I] could never explain that to Danny. It was finished [I returned home].
My poor husband, when we first started dating, I said to him, “Look, if my brother doesn't like you, I can't date you.” And he had no, zilch, experience with people who are deviant. So a neighbor, whom we grew up with, says to him, “Don't worry; just bring chocolate cake.” So now he shows up with six chocolate cakes. Daniel gave James [a] very hard time. We would come home from a date and Danny would be sitting on my bed, very indignant. He [Danny] would literally walk James to the door, just escort him out. [Eventually], I told him [James] “You're just going to have to sell your house and live here. I can't move out on Danny.” And miraculously he said, “OK.” My older brother said to him, “That was your key to run like hell. Are you insane? What [are] you doing here.” We have a two-family house, my dad lives in one apartment and we live in the other. He [Daniel] stays downstairs with us because this is the house that we grew up in so the idea of sleeping in another room would totally rock him.
My older brother is an interesting guy. He's the capitalist of the family. He went to [college and graduate school]. He's very intellectual and always struggled with guilt over Daniel. John always says, “You're half full and I'm half empty.” He just views things in sort of a negative cast. He was more of a loner. He didn't want to be anywhere where there were people even before that [Danny's birth].
In childhood, we didn't choose to spend a lot of time together. We had two very different groups of friends [and] chose to go to different Catholic high schools. We have a much better relationship now. We speak, we see each other frequently, and most of the time we spend together revolves around Daniel. I don't drive and Daniel lives [upstate], so John picks him up and brings him back and forth. He's much happier when he has an active, participatory role that has a beginning and an end.
I think that John probably has a lot of sorrow [and] would have liked to have a little brother that he could have done things with. [He] would occasionally say things as we were growing up like, “You think Dad thinks about what Daniel would be like if he didn't have Down syndrome?” And, you know, my response is, “Well, gee, I don't know, let's ask him.” [He'd say], “No, we can't do that.” [I'd say], “Well, why not? He's in the next room.” Well, what's interesting about that question is clearly he's thinking about it, otherwise, he would never bring it up. As far as I'm concerned, he's [Danny's] perfect. So, you know, I wouldn't want anything else. Although I don't know what it's like to have a younger sibling who's not disabled, I fantasize about world peace, not about what Daniel would be like.
I told him that I was participating in your study. I said, “Hey, you know, there's a psychologist and she's doing this study on sibling research.” And he looked at me and he said, “Oh, is anybody going to be interested in that?” And I said, “Yeah.” I talked to him about the need to validate people's experiences, if nothing else. And I said to him “Don't you feel like you need to have your experience validated?” and he said, “What experience?” So I said, “Oh, you know what, forget it.”
[When Danny comes home on a typical weekend], he sticks his head in the door and he goes, “Hi, honey, I home.” Nobody knows where that came from, he just stopped using my name years ago. So then he has a shower and we have a snack and talk about what we're going to [eat] that evening. So the minute that he walks through the door, he's talking about what we're going to order. Before he goes to sleep on Friday, he's talking about Saturday breakfast. About four or five years ago, he decided that he wasn't coming home every weekend, there was something that he wanted to do, some trip that the residence was going on. We were devastated. I mean talking about it sounds silly, but this was very traumatic. But, he comes home for the weekends every other week or every third week.
He's [Daniel] got a great sense of humor. My favorite story—my older brother gets the bagels and The Times every Sunday since he moved out, coming back home, no matter where he lives and we would all sit around and eat bagels. Daniel sits with The Times and we would think that he was really reading it and he goes, “Hum” and turns pages and he kind of rattles it and he knows how to fold it just like my dad does. He'll sit and do that for a few seconds before he gets bored. So, [one Sunday] Daniel had two huge bagels [and] he was looking at this third bagel and I asked him if he wanted it and he goes, “Yeah.” And I said, “Well, I was thinking about saving that bagel for James.” He goes “James. Where is James?” I think he was implying, well, if James wants the bagel, he should be here. And so I told him that James was out running and I said, “Yeah, I think James will be hungry when he comes home and he'll probably really want that bagel.” Then I totally forgot about the bagel. About an hour and a half later, James comes home and, he goes, “Do you know why there's a bagel on my pillow?” And I looked at Daniel and [he] said, “The bagel was for James.” Oh, Daniel was sweet. The hardest thing in the world for him to do is give up food, particularly something that he really likes. So for him, that's just such a sign of love, it's pretty cool.
About my choice not to have children, I do not think that Daniel has impacted on my decision. I just like being the “Queen,” and after spending my whole day as a school administrator, do not want to go home to additional responsibility for children. The greatest single life problem [I faced is] basically health issues. I'm having my spinal column reconstructed in five-year increments.
Danny has been an important part of my identity. Most of the choices that I made that are of any significance take him into account. I don't know who I would be if Danny wasn't born. He gave me from a very early age, a direction. He has taught me in his own somewhat unorthodox way about prioritizing and about what' s important and what's not important, also to be really honest, certainly with myself, because there's no pretense with him. And he's taught me compassion and a lot about diversity. I'm not a particularly creative person, but I think that the creativity that I have developed is the result of coping with different situations [with Danny]. Certainly, I have learned patience because he has his own time frame and no matter how often you say, “Come on, hurry up, we have to go, we're in a rush.” My family calls it “DS time,” Down syndrome time. They say the only thing Danny does quickly is eat.
I like to think that being Danny's sister has made me more empathetic to people in general. At a very young age, I became very concerned with what people are entitled to and what kind of services are available and that everybody should have equal access. Disability is a civil rights issue. [Daniel] provides a mirror to look at the things that I need to work on personally. Just the quality of how you spend time and the significant relationships that you have in your life. Probably if Danny wasn't here, [I would have] had a very different life in terms of my career choice, where I live, and what I studied in school. The significant relationships that were not thrust upon me, the ones that I chose, those are all directly related to him. I thank God every day he's my brother and that he needs me. I am extremely lucky.
The themes that emerged during analysis included the participant's self-perception and perception of each family member, the effect of her sibling experience on the formation of her identity, her portrait of family life, and her perspective on the impact and meaning of her sibling experience.
Anna's Perception of Herself and Each Family Member
Through the stories Anna tells about herself and her family, she constructs her identity (Gillman et al, 1997). From the profile's first paragraph, we see that Anna “had specifically instructed” her parents to bring home a girl, and she was “determined to fix” her sibling to “maximize his developmental potential.” Anna paints a picture of herself as a determined, opinionated, and proactive individual from early childhood. She recognizes that these traits were shared with her mother. Moreover, she believes that much of their conflict may have stemmed from their similar personality traits. They had similar traits but dissimilar attitudes, beliefs, and perspectives with regard to Daniel. Their divergent attitudes and beliefs on rearing and education frequently caused conflict. Anna acknowledged that she lacked empathy for her mother and her mother's personal feelings of failure for having a child with an intellectual disability. Besides their differing roles, mother versus sibling, they were also raised as part of different generational cohorts and this may also explain, to some degree, their differing perspectives on Down syndrome.
According to Bogdan and Taylor (1992), Anna's relationship with Daniel embodies the four aspects of humanness that nondisabled people attribute to those with disabilities. Consider the Sunday morning bagel story, in which she (a) understands his thinking even when he cannot communicate it—she knows what he is thinking as he looks longingly at the third bagel; (b) sees his individuality through his likes and dislikes—she knows his love of bagels/food; (c) views him as reciprocating—he leaves the bagel for James, which she interprets as a sign of his affection and caring for James; and (d) acknowledges his social place in the family home—he provides some comic relief by mimicking his father's reading of the New York Times. Anna communicates her brother's humanity through her description of his likes and dislikes, feelings, and motives. His IQ is meaningless within the social context of his relationship with her and others. Anna's perception of her father's personality shows him to be accepting, nonjudgmental, and supportive towards all family members. Her brother John is described as an intelligent, financially successful, pessimistic, and less social individual. She perceives John as experiencing more sorrow over Daniel's disability, although, at the same time, unable to recognize it as an important formative experience.
The manner in which each family member reacted to and treated the sibling with mental retardation had a critical impact on the participant's perception of that family member. Anna's mother's beliefs and treatment of Daniel, such as her notions of him as sick and her tendency to infantilize him, had a negative impact on Anna's feeling and attitude towards her mother.
The Formation of Anna's Identity
It is not uncommon for people with mental retardation to be labeled as incapable of contributing to others; however, Daniel had a profound, predominantly positive, impact on Anna's life. Since his birth, she has considered herself as his surrogate mother and, as such, shaped her life with his needs in mind, from her choice of where and what to study to where to live. Even in childhood, Anna was not ashamed or embarrassed by her brother's difference. She felt no stigma from the label placed on him as evidenced by the “show and tell” story (Taylor, 2000).
Daniel has also had a significant impact on her formation of serious relationships with others. Daniel's acceptance of others, particularly her husband, was the key to opening the door to a relationship with Anna. Her sibling experience has been a central motivating factor in the formation of her identity. She acknowledges that in her life choices, she always took her brother into consideration.
Anna's Portrait of Family Life
Each family member played a particular role, and each family member accepted what others could and could not do (except for Anna's conflict with her mother). With the prescience of her own premature death, her mother chose to find a placement that allowed the family to maintain regular contact with Daniel. Anna chose to be Daniel's surrogate parent and accepted the roles that her father and brother each played.
In Anna's perception, there is no resentment among the family members. Each contributes what he or she is able to contribute. The parents never told either Anna or John what they “must or should do” for Daniel. They accepted what was done, and everyone was included and encouraged to participate within their own given individual abilities. She portrays a picture of a healthy, functioning family, despite the enormous strain of Daniel's intellectual impairment and heart surgery and her mother's serious, chronic illnesses.
The Impact and Meaning of the Sibling Experience
It is important to note that Anna did not consider herself a victim. She chose to make Daniel an important part of her life, not because it was demanded by her parents but because she felt enriched by the relationship. It is a pleasure to enter into Anna's lived experience because her very personality contains all the qualities of a resilient individual. Resilience is defined as the “capacity to prevail in the face of adversity” (Ryff & Singer, 2003). The traits most frequently displayed by resilient individuals include being assertive, verbally expressive, energetic, personable, dependable, open-minded, smart, and confident (Robins, John, Caspi, Moffit, & Stouthamer-Loeber, 1996). All these personality traits can be found within Anna.
Furthermore, Anna displayed a type of “vital engagement” described by John Dewey in 1913. Dewey maintained that an individual is vitally engaged when he or she is “engrossed, or entirely taken up with some activity because of it's recognized worth” (cited in Nakamura & Csikszentmihalyi, 2003, p. 86). Anna is vitally engaged with Daniel, and her involvement extends beyond her brother to include helping the families of persons with intellectual disabilities. Nakamura and Csikszentmihalyi (2003) described this as a “calling.” An individual experiences a calling when he or she devotes a significant amount of his or her time and attention to an object, person, group, institution, or political cause because it is seen as a worthy endeavor. Anna's calling has lead to a rich and fulfilling life.
Although these qualitative findings cannot be generalized, a number of variables emerge for future consideration. First, Anna believes she is a more empathetic individual as a result of her experience as the sister to a brother with Down's syndrome. Is this merely her perception, or does the sibling experience increase an individual's ability to empathize with less fortunate people? Second, Anna appears to use Daniel as a tool in evaluating the personal qualities of potential friends. If these individuals pass the “Daniel test,” then they are suitable friends. Do other siblings assess the qualities of potential friends by watching other people's reactions to their siblings with mental retardation? Third, Anna does not cite her sibling experience as the most challenging experience of her life. This could be reassuring to parents and might merit further investigation regarding whether this is true of other siblings. Finally, I began this paper with the following question: “Would you be the same person if your life had been shared with an intellectually disabled sibling?” For Anna, the answer is no; she believes that she would be a different person if Daniel had not been her brother, although she does not make the same claim about the impact of her typically developing sibling John. Do other adult siblings feel that their sibling experience changed their fundamental identity? These are only a few of the possible questions raised by this case study.
The author thanks Florence Flaton and Hofstra University for funding this research; the agency that assisted in conducting this research and its former executive director; and, most especially, the director of clinical services, whose efforts made this work possible. Appreciation is also extended to Linda DeMotta and John Teehan for their editorial assistance.
Author: Robin A. Flaton, PhD (firstname.lastname@example.org), Assistant Professor. School for University Studies, 130 Hofstra University, Hempstead, NY 11549