This one-year multicultural feminist critical narrative inquiry focuses on how one Puerto Rican/Black working class male draws on his spirituality to negotiate his speech-related disability. By utilizing multiple qualitative methods, the researcher and child-co-researcher/participant illuminate how he draws on his agencies and intersecting identities to negotiate teaching people lessons, teasing, and language differences. This paper highlights the abilities of children to name their spiritualities and to tell stories that clearly illustrate the intersections of spiritualities and disabilities. It serves to expand constructions of children as knowledge producers, agents, teachers, justice seekers, and shapers of learning environments. Understanding children's negotiations of interpersonal school structures has the potential to create more equitable structures that affirm the identities, increase academic success, and support the agencies of children who are marginalized across their intersecting identities.
Introduction
Researchers working with school-aged children with speech-related disabilities have identified interpersonal structures between students and/or between students and teachers that negatively impact self-esteem and academic and social competency (Ginsberg, 2002; Redmond & Rice, 1998). Many assert that children with speech and language impairment endure present and future lives that are associated with social, academic, psychological, cognitive, and occupational challenges (Johnson, Beitchman, Young, & Escobar, 1999; McLeod & Bleile, 2004). For example, children with speech-related disabilities are less likely to have friends, to be chosen for group activities, and more likely to be labeled by both adults and peers in a deficit manner (Ginsberg & Wexler, 2000; Jerome, Fujiki, Brinton, & James, 2002). Increasing educators' awareness in this realm becomes more significant in light of the fact that more than three million Americans stutter and 25% of all children stutter at some point in their life (Swan, 1993). Further, approximately eight million people in the United States and five percent of children have noticeable speech disorders (National Institute on Deafness and Other Communication Disorders, 2005).
Seeking to bring children with speech — related disabilities to the fore of ideological, pedagogical, and structural changes, some researchers contend that the issue is more than one of disability. They posit that children with speech-related disabilities face inequities through interpersonal structures of schools that devalue and marginalize them by discounting their knowledges, maintaining low expectations, and perpetuating negative stereotypes (Brinton, Fujiki, & McKee, 1998). In this vein, some scholars are paying attention to how children with speech-related disabilities endure school environments characterized by oppressive behaviors such as bullying, being ignored, and teasing (Brinton, Fujiki, Spencer, & Robinson, 1997; Mishna, 2003). Efforts are concentrated on examining ways that schools as institutions maintain and promote discriminatory practices and structural injustices (Marks, 1997). Seen in this light, scholars with equity lenses — and those using multicultural, critical, and/or feminist frameworks — expand traditional agendas for speech-related disabilities.
Seeking to augment this extended agenda, I contend that the majority of studies focus solely on the positionality — social location — of disability without taking into account other intersecting positionalities such as spirituality. Little is known about how spiritual children with speech-related disabilities are shaped in these inequitable pedagogical structures (Artiles, 2003). In order to contribute to the field, this paper draws upon understanding how children negotiate, make sense of, and act upon their multiple worlds (Author, 2004; Oldfather, 1995). In so doing, I posit that understanding how children draw on their intersecting positionalities of spirituality and disability increases the possibilities for extending researchers' and educators' understandings about how children maintain academic success, high self-esteem, and fortresses that buttress oppressive interpersonal school structures (Egan-Robertson & Bloome, 1998).
Grounded in multicultural feminist critical frameworks, this paper seeks to join the conversations of spirituality, education, and speech-related disabilities by illuminating how Gabe draws on his spiritualities to overcome the difficulties that he faces as a result of his speech challenge and to negotiate the interpersonal structures in his school. Similar to the ways in which Gabe draws on his spiritualities within his school environment, many people with disabilities have drawn on their spiritualities to negotiate their interactions with others (Specht, King, Willoughby, Brown & Smith, 2005). Throughout time people with a range of abilities have used spiritualities as venues through which they make meaning and sense of their contexts, lived realities, and the entities in which they come into contact (Coles,1990; Douglas,1999;). For many, including Gabe, spirituality is accompanied with an equity focus (Gutierrez, 2001; Isasi-Diaz, 1996). Marginalized communities have characterized their spiritualities with activist-oriented world-views and lifestyles that work against oppressive structures and contexts to engender justice and resources for marginalized communities (Martin, 2000; White, 1999).
In this article spiritualities have been conceptualized with three components:
- They connect people's minds-spirits-bodies to (un)seen forces
- They connect people's minds-spirits-bodies to the other entities created by and/or related to those (un)seen forces
- They include spiritual practices which consist of the ways that people manifest, sustain, and develop their spiritualities such as meditating, praying, chanting, exercising, reading, and writing (Brant, 1994, Sams, 1999).
Consider an example that demonstrates these three intertwined concepts. Six-year-old Gabe, who has a speech related disability, believes in an all-powerful God that has the ability to give him strength and patience. Gabe also believes that God is the creator of all other humans. Sometimes when he is in school and classmates tease him about his speech, Gabe engages in the spiritual practice of talking to God in order to keep him from slapping the classmate upside the head.
First, I lay a theoretical foundation that links spirituality, speech-related disabilities, education, and child-centered methodologies . Within the literature review, I argue the need to create equity-oriented qualitative methodologies that forefront children's experiences and voices. Second, I present the narrative context from which this paper arises. Third, I present the stories of Gabe, a Black/Puerto Rican spiritual first grade working class boy with speech-related disabilities. His stories highlight how he: 1) conceptualizes his spiritualities; 2) draws on his spiritualities to negotiate his understanding of disabilities; and 3) navigates interpersonal relationships in school via spiritualities. Finally, I conclude with implications for educators and researchers to draw on the agencies, knowledges, and negotiations of spiritual children with speech-related disabilities in order to (re)vision the conversations, policies, pedagogies, methodologies, and structures that are, can, and should occur in educational institutions that increase the possibilities for all children to succeed in school.
Linking Spirituality, Speech-Related disabilities, Education, and Child-Centered Methodologies
With ever increasing diversity impacting the field of education, culture can no longer merely be seen as synonymous with race/ethnicity. Instead, culture incorporates a total way of life and being for people (De Gaetano, Williams, & Volk, 1998). With this inclusiveness in mind scholars are calling for people to see culture as inclusive of religion and spirituality in addition to sex, sexuality, gender, language, and citizenship (Author & Bentley, 2006). Current theorizing of spiritualities seeks to increase its visibility as an aspect of culture within public schools (Halford, 1998/9). Scholars illuminate that the large majority of the American population is misinformed and believe that religion/spirituality can not be engaged in school because of the constitutional separation between church and state (Palmer, 1998/9). They challenge the misconception that religion and spirituality are synonymous and interchangeable concepts and instead name religion as a subset of spirituality (Author, 2006). In actuality, teachers, and students alike may discuss and observe spiritualities and spiritual practices as long as they are not proselytizing to others.
Within the theorizing about spiritualities, sparse but significant attention has been paid to how people with disabilities engage spiritualities and spiritual practices in order to cope with daily life occurrences, to manage stress, and to find hope, patience, and strength (Reyes- Ortiz, 2006). Despite the paucity of work done in this area, scholars agree that many spiritual people with disabilities contend that their spirituality is intricately woven into daily experiences in order to sustain, affirm, or alter mental, physical, spiritual, and emotional states (Revheim & Greenberg, 2007). For spiritual people with disabilities, spiritualities have served as a motivator, healer, and unifying force that enables them to resist, and forge ahead in societies, which often restrict resources from them and marginalize them against societal norms (Speraw, 2006).
Some spiritual people with disabilities assert that spiritual practices such as meditating, praying, going to religious services, and reading allows them to stay connected to (un)seen force(s) in order to express larger purpose, stay reflective about their situation, and teach others lessons (Schulz, 2005). Seeking to contribute to this theorizing, Schulz (2005) interviewed 12 adults with disabilities and examined their constructions of spirituality and the manner in which their disabilities related to their spirituality. Many of the participants stated that 1) their assistance from (un)seen forces propels them from day to day; 2) their disability is a catalyst for continual spiritual growth; and 3) their spirituality helps them redefine life purpose. Schulz provides implications for occupational therapists to draw on spirituality more for some of their clients with disabilities.
The call to join intersecting aspects of culture, disabilities and spirituality, is increasingly evident in the lives of spiritual people with disabilities and the families of those people as well. Speraw (2006) interviewed 26 spiritual parents of children with disabilities. She was interested in the experiences of these parents who were seeking spiritual and religious education, foundations, and learning experiences for their children. Many of the parents who attended formalized religious institutions reported feeling disappointed and shaken in their faith because the religious institutions and leaders could not or would not accept and value their children. All of the parents believed that their children were spiritual beings and that many of the people in religious communities that they came in contact with devalued, marginalized or ignored their children. Seeking to find communities that would accept their children, parents spent immense amounts of time switching religious and spiritual learning environments. Some were successful, although it took many parents over 20 switches. Other parents made choices that included spiritually educating the child themselves, contesting the religious leaders and advocating for resources, and one family decided to keep attending their synagogue but to leave their child home. Many of the parents recommended that nurses should also advocate to religious communities about the need for resources and support for children with disabilities. Speraw signified that future research must evoke deeper understanding about the role of spiritualities in the lives of people with disabilities, particularly children.
Focusing on the intersecting positionalities of spirituality and disabilities is aligned with disability studies theorists who seek to create more equitable conceptions of people with disabilities. They contend that the notion of disabilities is a social construction by people with power and legitimized structures who inequitably treat people around their varying abilities (Dudley-Marling, 2004; Harry, 1992). The choice of polarized language, disability/ability makes invisible the spectrum of varying abilities and disabilities that all beings possess (Ramsey, 1998). Moreover, rarely discussed is the fact that disabilities are impacted and constructed by context, temporality and mortality. Thus, the term disability necessitates seeing the continuum of disabilities that each of us have.
Disability studies highlights the ways that stories are constantly told that construct people by what they cannot do and make invisible all of their strengths and abilities (Anzul, Evans, King, & Telier- Robinson, 2001; Marks, 1997; Shapiro, 1994). Inequities are further maintained as people with disabilities bear the burden of proving what they can do (Derman-Sparks & The Anti-Bias Task Force, 1989). Great efforts are rallied into "examining how people use notions of difference to create borders," enforce hierarchy, and maintain institutional and interpersonal discrimination (Artiles, 2003, p. 192).
In an effort to highlight how children with speech-related disabilities experience such borders within schools, researchers have engaged methodologies that include teacher and parent surveys, observations, and quantitative research designs (Anderson, Pellowski, Conture, & Kelly, 2003; Ginsberg, 2002; Johnson, Beitchman, Young, & Escobar, 1999; Stothard, Snowling, Bishop, Chipchase, & Kaplan, 1998). Research illuminates the correlation of behavior problems with speech-related disabilities, increased social rejection, and withdrawal (Brinton, Fujiki, Spencer, and Robinson, 1997; Hart, Fujiki, Brinton, & Hart, 2004). Research also informs us about the negative impact that school contexts that are heavily shaped by language practices have on children's self-esteem, peer relationships, and emotional, psychological, and social well-being (Brinton, Fujiki, & Mckee, 1998; Jerome, Fujiki, Brinton, & James, 2002). For example, Conti-Ramsden and Botting (2004) identify bullying as a frequent and on-going experience for children with speech-related disabilities that increases as children get older and advance grades in school. Marks (1997) and Mishna (2003) assert that despite the negative effects of bullying on those who are bullied, most schools and society at large have tolerated bullying without casting it as inequitable and oppressive acts.
Such inequitable manifestations are magnified when focusing on intersecting marginalized positionalities, as in the Speraw (2006) research. Thus, scholars are demanding that we examine the social construction of disabilities in relation to the other social constructions of positionalities such as race, class, sexuality, age, and gender (Harry, 1992). Scholars forefront how different cultural beliefs shape people and are shaped by these social constructions of disabilities (Harry, 2002). Moreover, they contend that inequities are further maintained within disabilities research when positionalities of disabilities are given precedence over other positionalities such as race, spirituality, class, gender, and sexuality (Artiles, 2003; Harry, 2002). This forefronting of one positionality over another obscures people's intersecting positionalities and also sustains inequities by making invisible how people who are impacted by interlocking systems of oppression cope with everyday realities (Reid, 1996; Stainton & Besser, 1998).
Multicultural feminist critical researchers contend that in order to more fully understand people's realities and to create more equitable structures one must understand how people shape and are shaped by their intersecting positionalities. Consequently, these researchers employ a lens of intersectionality — an interpretive framework for thinking through how intersections of race, class, gender, and sexuality shape any group's experience across specific social contexts (Collins, 2000). Intersectionality also includes but is not limited to abilities, language, spirituality, age, size, and ethnicity (Dixon, 2002; Oesterreich, 2003). They contend that children and youth, in particular those who have been oppressed, enact agencies based on the knowledges they have gained through the lived experiences and inequitable situations they have endured around these intersections.
Thornton (1999) defines agencies as purposeful actions to change the conditions of lives and affirm identities. By focusing on agencies and constructing children and youth as agents who shape the relationships and learning environments in which they participate, multicultural feminist critical researchers challenge mainstream beliefs that inequitably identify children with disabilities, young children, language-minority children, and ethnic minorities by what they cannot do (Grieshaber & Cannella, 2001; Soto, 2002). They illuminate how children and youth who have been marginalized on account of their abilities, language, race, ethnicity, spirituality, and age battle oppressions and live with hope in their struggle for equity by challenging oppressive interpersonal school structures through the creation of positive relationships, visibility, and affirmation of their identities (Bentley, 2005).
Yet, in both the fields of spirituality and speech-related disabilities researchers do not employ methodologies that focus on children as agents and knowledge creators. Instead of speaking with the children, most of the literature either observed the children without their feedback or interviewed parents and/or teachers about the children. In seeking to make shifts in epistemological stances towards who has knowledge and whose knowledge counts, more qualitative methodologies that center the voices and stories of children are necessary (Chae, 2004; Knight, Author, Dixon, & Bentley, 2004; Stainton & Besser, 1998). Rafferty, Piscitelli, and Boettcher (2003) assert that research needs to "more systematically delineate the mediating influences of individual child, family, and program variables" (p. 474). Creating the spaces for participants to gather data and work with the researcher to analyze it transforms the hierarchal notion that the researcher is the sole negotiator of knowledge. In this vein, spiritual children with speech-related disabilities would utilize their agencies to decide what is important and challenge who theorizes research (McLeod & Bleile, 2004).
Multicultural Feminist Critical Narrative Inquiry Context
Research Purpose
The data for this article arises from a larger one-year multicultural feminist critical narrative inquiry with three urban first grade public school Black and Latina/o children and their Black male teacher. The purpose of the research was to tell stories about the literacies practices, including spiritual practices: 1) of young children and their teachers in early childhood classrooms within a public elementary school; 2) that maintain mind-body-spirit connections and create more (in)equitable conditions within a classroom; and 3) that undergird a collaborative research endeavor with a teacher, three children, and a researcher. Three questions guided this work:
- What are the literacies practices, including the spiritual practices, of the children and teacher?
- How does each person's literacies practices, including his/her spiritual practices, create, perpetuate, and maintain (in)equities within the classroom?
- How are members utilizing their literacies practices, including their spiritual practices, to inform classroom pedagogies and curriculum?
This multicultural feminist critical narrative inquiry challenges: four-fold how stories are distributed and for what purposes; the types of knowledges produced by stories; who has been privileged to tell stories; and the ways in which some stories have (not) been validated and (de)valued over others (Banks, 1996; Parker & Lynn, 2002). Multicultural, feminist, critical theorists and/or scholars of color posit storytelling methodologies as important strategies for creating more equitable societies and educational institutions (Brant, 1994; Minh-ha, 1989). They argue that storytelling methods create spaces for those who have been silenced, including Latinas/Latinos, Blacks, people with disabilities, and children, to include their voices in the theorizing that occurs about the practices that impact their lives (Banks, 1996). Moreover, their worldviews move narrative inquiry to an understanding that storytelling is a political process (Daniel & Effinger, 1996; Solorzano & Yosso, 2001).
Research Site
Gabe and the co-researchers shared the same New York City public elementary school. Within this school, the Latina/o and Black lower and working class student population are predominately Spanish and English speaking, 64.4% Latinas/os and 33.8 % Black. They live in lower and working class families and approximately 88% of the student population is eligible for free lunch. Although this narrative inquiry was focused on in and out of school contexts, the data was collected outside of their school day.
Participants
This research began with purposeful sampling of a Black male teacher, Mr. Williams, who identified as an engager of literacies practices that included spiritual practices (Bogdan & Biklen, 1998). Together Mr. Williams and I engaged in a modified community nomination process and chose three children to be co-researchers (Ladson-Billings, 1994). The process involved identifying children who demonstrated spiritual practices in the classroom. We looked and listened for children who expressed concern about the lives of other children in the classroom and who sought ways to improve their conditions and well being in school (Jagers, Smith, Mock, & Dill, 1997). We listened for children who talked about God, spirits, and religious affiliations. We looked for children who took on the role of peacemaker, teacher, or problem solver in the room and children who complained about the injustices of their school (Coles, 1990). We then made decisions about the purposeful sampling of diverse ethnicity, race, language, spirituality, and gender.
During this time I remained a volunteer in Mr. Williams' classroom, holding individual conversations with these children, reading with them, and teaching them in small groups. This was done to establish rapport with the children who were potential co-researchers. After two months of being in the classroom as a volunteer and a month where I focused each week on each individual future co-researcher, I explained the study to the children and told them they were being chosen as a co-researcher. Mr. Williams had a follow-up conversation with each of these children. And then we had another follow-up conversation with the children a week later. The following week, I had one last conversation with the individual child to ask them whether or not they would want to participate.
In order to participate in the study they had to answer yes to the following questions:
- Do you believe in a connection to some (un)seen force?
- Do you believe that your connection to that (un)seen force affects what you do in the classroom?
- Are you willing to talk to your teacher, author, and two other students about your connection to (un)seen forces?
- Will you help plan classroom activities and make the classroom a better place?
- Will your family members/guardians let you talk about and do these things?
Each of the children said yes and then Mr. Williams, myself, and their guardians had a meeting to explain the study. One final meeting was had with each participant's family at their house as a way for the families to gage my own beliefs and personal interactions. All families agreed to have their children participate. Gabe is a Puerto-Rican/Black male, Kevin is a Black male, and Pam is a Dominican female. We also welcomed Ray, Gabe's second grade Puerto Rican brother, and Joseph, Kevin's first grade Black cousin/brother.
Data Collection and Analysis
Narrative Interviews
Participants engaged in four sets of formal semi-structured interviews that lasted from 45 min to 1 ½ hrs in locations chosen by participants that included homes, work sites, and McDonalds (Meyer, 1996). The first set of interviews addressed literacies practices, the second spiritualities and spiritual practices, the third addressed how literacies practices, including spiritual practices, were brought into the classroom, and the fourth set of interviews addressed the (in)equities in the classroom. Each interview was taperecorded and fieldnotes were taken. Following each interview I reviewed the tape and made followed up questions for the next interview. All interviews were transcribed.
Throughout each interview I paid attention to the fact that I was working with children who needed to be comfortable and willing as possible (Mauthner, 1997; Miller, 2000). In each interview children were fed the lunch of their choice. Additionally, during the children's interview we often read a children's book that I chose which connected to something that we had previously spoken about. For example, after speaking about playing the drums with Kevin and Joseph we read Max Found Two Sticks. Victoria and I read Pepita Talks Twice after an interview where she talked about being bilingual. Each interview was also either preceded or followed up by some type of social activity — either a trip to the park or involvement in a game or art activity. After each interview follow-up calls were made to the participants family members in order to check on how they experienced the day.
Artifact Discovery
Building from the foundation of researchers who worked with children that found that artifacts evoke deeper level conversations and draw out analysis and meaning-making that cannot be answered solely in interviews, I embedded artifact discoveries throughout all of the other methods (Barker & Weller, 2003; Soto, 2002). De Gaetano et al (1998) and Meyer (1996) assert that collecting, producing, and examining artifacts elongates the plethora of strands that unearth and represent multiple literacies practices. Therefore, I understood artifacts as tangible products engaged with and created by human beings that serve as both manifestations of people's lived realities and tools to stimulate one's memory (Connerton, 1989; Leonard, 2006).
The artifact discovery used was two-fold, creating artifacts, such as making clay sculptures, and gathering artifacts that already exist, for example, instruments that function as a part of our lives. The first type of artifact discovery consisted of drawing places where we engage spiritual practices, writing poems, and creating wooden artistic representations of Bible verses. One of the most pervasive artifact discoveries was the reflexive photography because it elicited stories and meaning making about participants' literacies practices (Smith & Woodward, 1999). Children received instant cameras and were shown how to operate them. They took photographs that represented aspects of their spiritualities and spiritual practices. After co-researchers returned their cameras they participated in a photo elicitation interview where they shared stories, symbolism, and knowledges about their photographs (Harper, 1994; Harrington & Schibnik, 2003).
The second type of artifact discovery involves the collection and engagement with artifacts that are (un)conscious components of people's lives. Participants examined their music collections and found songs that were reflective of their literacies practices, including their spiritualities and spiritual practices. They also gathered rosaries, bibles, toys, and photographs. Lastly, we gathered written documents that included notes composed or collected.
Focus Groups
The children participated in three focus groups that ranged from two to fours long and occurred in restaurants, homes, and community centers. During each focus group children ate lunch, listened to music, and participated in an artifact discovery as a way to modify traditional focus groups with a more child-centered approach (Ronen, Rosenbaum, Law, & Streiner, 2001). These focus groups provided opportunities to make meaning of the dynamics between children around common topics such as death, family involvement, and praying. They also provided further understanding about how children's literacies practices, including spiritual practices, are created, informed, negotiated, and manifested in the contexts of peers and myself (Madriz, 1998; Morgan; 1997).
The first focus group took place after school and all the other focus groups happened on the weekend. For example, children were given clay and produced representations of their spiritualities and they made collages that told stories about their understandings of family and spirituality. The co-researchers used disposable cameras and the videocamera to take pictures of our session and pictures of things around them that connected to their literacies practices, including their spiritualities and spiritual practices.
This paper includes data from a focus group where we went to see the movie Finding Nemo and then discusses the spiritual aspects of the movie. Finding Nemo is about a fish named Nemo who is sheltered by his overprotective father because he has one fin that is smaller than the other. Nemo gets swept away by the current and eventually captured and sold way across the ocean to a dentist. While living in the dentists' fish tank, Nemo meets other sea creatures and learns a lot about his abilities. During this time, his father is desperately trying to save Nemo and meets a lot of other sea creatures who help give him a wider perspective about Nemo and Nemo's abilities. After watching the movie Finding Nemo we ate at McDonalds and discussed the movie.
Collaborative Conversations
Participants also engaged in three collaborative conversations where the children, teacher, and researcher met to discuss classroom practices and created curriculum (Hollingsworth, 1994). Collaborative conversations were designed so all members could see themselves as activist, teacher, and learner who guided the collaborative processes (Clark & Moss, 1996). These collaborative conversations lasted approximately two hours and provided on-going opportunities for discussions, reflection, analysis, and planning in regards to the inclusion of multiple literacies and spiritual practices inside the classroom. Here, children also ate, listened to music, and socialized.
During the first collaborative conversation I brought in spiritual cards with pictures that represented aspects of spirituality and people's spiritual roles. Some of these cards were identified as poet, healer, reaper, earthmother, spiritual guide, and changer. Participants were asked to pick cards that represented themselves and their spiritualities and spiritual practices and to talk about them. If they did not see cards that represented them they were given the option of drawing a card on blank index cards. The co-researchers chose cards that included drummer, dancer, queen, dreamer, builder, teacher, wanderer, and helper. The wanderer card is referred to later in the paper.
Participant Observation
Over two months I shadowed each participant weekly from one to five hours in and out of home/community contexts in order to familiarize myself with their multiple literacies and spiritual practices (Bogdan & Biklen, 1998; Connelly & Clandinin, 1988). I took notes on what texts they engaged and created, whom they interacted with, and how they attended to issues of (in)equity. These observations took place at family gatherings, in homes, at their coaching job, in the park, at the store, at McDonalds, and at church. I used what I learned to dialogue with Mr. Williams to create curriculum, and be critically reflexive about his teaching practices.
Data Analysis
The data analysis of this multicultural feminist critical narrative inquiry was based upon the constant comparative method where each component of data collection and analysis is used to inform each other (Marshall & Rossman, 1999). Tapes were transcribed verbatim and videotapes were partially transcribed. Data were initially coded for each participant and across data sources to identify emerging themes and patterns about literacies practices, namely spiritual practices, family involvement, and school inequities (Lyons & Laboskey, 2002; Strauss & Corbin, 1998). I engaged dialectical theory building, moving back and forth among data, theory, participants, and a community of fellow researchers to draw relationships between concepts, codes, and patterns with the literature, to match examples, build from, and/or extend developing theories (Strauss & Corbin, 1998). Participants provided member checks during focus groups, elicitation interviews, and after stages of their chapters were written.
In the remainder of this paper, I (re)tell the stories of Gabe and demonstrate the intersections of his spiritualities and his speech-related disabilities. First, his stories disrupt traditional stories that name young children as being unable to talk about their lived experiences and discrimination. Second, these stories show Gabe maintains positive self-esteem, teaches others, and seeks to maintain positive relationships in school.
Introducing Gabe and His Concept of Spirituality
Gabe is a six-year-old Puerto Rican/Black, English-speaking, spiritual, urban male first grader from a working class family with speech-related disabilities. He is a very verbal friendly bright child who communicates well thought-out ideas on many subjects. He readily shares his opinions on things that are unfair in school and at home, how to negotiate friendships, and loves to talk about movies.
Gabe was selected as a participant for this study because he took on a leadership role in the classroom and concerned himself with helping other students both academically and socially. He was well liked and respected by both his teacher and the students in his class. Gabe was very verbal and often spoke up to his teacher, Mr. Williams, regarding what he believed was fair and unfair. His strong voice and worldviews shine forth throughout the remainder of this article.
Nadjwa: A lot of grown ups say kids don't know anything about God. What do you think about that?
Gabe: Some kids do know about God. Some kids' mothers tell them about God and some of the other kids' mothers don't speak to them about God. My mother has talked to me about God she said he made us and when our moms have us she will be okay. That's all.
Nadjwa: ok
Gabe: God sees everything. He sees us and we can't see him. I don't talk to kids about God because they don't get it.
Nadjwa: What do you think it is that they don't get?
Gabe: They think their mother made them but their mother didn't make them. God made them. God made their ancestors.
Nadjwa: Some people believe that God made the plants and the animals and the trees. What do you think about that?
Gabe: I think God made the people, the dinosaurs, the animals, and the trees.
Nadjwa: Some people believe that you can look at the animals and see God inside the animal, what do you think about that?
Gabe: I think that's real.
Nadjwa: What animal do you think you can look at and see God inside of?
Gabe: rhinos, tigers, and lions
Nadjwa: Some people think you can look at the trees and plants and see God, what do you think about that?
Gabe: No
Nadjwa: Some people think that you can look at different people and see God. What do you think about that?
Gabe: not sure
Nadjwa: Some people believe in ghosts.
Gabe: No
Nadjwa: Why don't you believe in ghosts?
Gabe: You think you see them but when you wake up you don't see them.
Nadjwa: Some people believe in what's called a spirit. Have you ever heard the word spirit?
Gabe: I heard of spirit. My mom told me about it. It is like if you have a brother and he died and you have a black thing that is a spirit.
Nadjwa: You are right. People think of that kind of spirit.
Gabe: I have seen a spirit at my old house. I just looked at it.
Nadjwa: Some people see spirits a lot and some people never see any. Some people get scared when they see them. Do you remember the other day when Stacy was reading and she said she was scared of the dark? I asked her why she was scared of the dark and she said because she sees ghosts at night. Some people call spirits ghosts. Sometimes people think they are the same thing.
Gabe: Well they ain't!
Nadjwa: You don't think they are the same thing?
Gabe: I know they ain't!
Nadjwa: Why do you think they are different?
Gabe: Because a spirit is I already told you what a spirit is
Nadjwa: ok
Gabe: But a ghost is not real just because you see it in the movie doesn't mean it is real.
Nadjwa: So you think spirits are living things and ghosts are fake and not real things.
Gabe: Non-living things
Throughout our research endeavor I discovered that the complexities of Gabe's spirituality were based on the (un)seen forces of God whom Gabe always called a he. For Gabe, God was ever-present, all-seeing, and invisible to people. Gabe also contended that God was the creator of all people, animals, and trees. Gabe's spirituality was also grounded in a belief in the spirits of both his father and baby brother who died. Gabe believed that you could see spirits and interact with them. He made a very clear distinction about spirits being living communicative forces and ghosts being non-living fake things that you see on television.
Drawing on Spirituality to Negotiate Disability
Repeatedly Gabe told stories that identified God as an important shaper of his life. Many of these stories illustrated that with God's help he and other people with disabilities would always be okay. During one of our conversations Gabe told me that his stepbrother was scared because his stepfather was having bad seizures. He spoke:
My mother also always tells me that God doesn't put on us more than we can bear. I told my brother not to worry about his father's seizures. That's nothing to be embarrassed about. God made us all and will help take care of us. All of us have something. I have my speech impediment, each of us have something. Don't be embarrassed. Instead just try to make sure that he is okay.
Gabe reveals to us important factors about his spirituality that are evident in many of his stories. In analyzing his words with the definition of spirituality that guides this article, we see that he is connected to the (un)seen force of God who "made us all and will help take care of us." It is also possible to see how Gabe is connected to his mother, who is, he believes, an entity created by God. As Gabe states earlier, "They think their mother made them but their mother didn't make them. God made them. God made their ancestors." In the same vein, Gabe believes that God made his mother who often provides Gabe advice and support. During our talk he repeated the words from his mother, "My mother also always tells me that God doesn't put on us more than we can bear." This retelling of life advice illustrates that one of Gabe's spiritual practices is talking with his mom who reminds Gabe about God's choices and about Gabe's own strength and condition. Gabe's words share the sentiment of many of the spiritual participants with disabilities in Schultz's (2005) research when a participant there also states, "God doesn't give us anything more than we can handle" (p. 1293). Similar to Gabe's beliefs and the beliefs of his mother many of Schultz's participants named God as a force who gave them their disability and it may be seen as a way of life, but never as a burden or a punishment.
When Gabe states, "All of us have something. I have my speech impediment, each of us have something. Don't be embarrassed," we see the ways in which he has accepted his disability and embodied positive future experiences (Specht et al, 2005). Further, Gabe demonstrates the second component of the definition of spirituality when he maintains connections to his stepbrother, an entity he also belives is created by God, by giving him the following advice about his stepfather, "Instead just try to make sure that he is okay." He also demonstrates this second component — maintaining connection to his stepfather, an entity created by God — by being actively concerned about his welfare. This manifestation of spirituality resonates with what Schultz (2005) discovered about her participants' constructions of spiritualities, which entailed being responsible for one's family.
Gabe's belief that God helped people with disabilities was also visible during the focus group that occurred after we saw the movie Finding Nemo, where issues of disabilities are represented by the three main characters. Gabe recalled Dorie, a fish with a short-term memory loss, and asserted that "God helped Dorie remember stuff and God helped them remember if they helped each other, they'll be rewarded." During that focus group, Gabe was the most vocal child there, and he talked about how "Nemo had a little fin but that never stopped him…because God helped him." He also talked about Gil, an adult fish who also has two different-sized fins, one significantly smaller than the other, and the advice he gave Nemo. Gabe brought his spirituality to bear upon his understandings of the end of the movie when the fish worked together and were able to escape the fish tank .He remarked that "I think God helped the fish get away…because some people just take faith they got to trust the Lord."
In listening to Gabe make sense of the movie through a spiritual perspective it is possible to see that like many of the spiritual participants with disabilities in Specht et al's (2005) research who believe in God, Gabe names God "as a guiding force and faith as a provider of inner strength" (p. 58). For Gabe, when people have faith, God continues to take care of them and helps them so their disability is not a problem. Further, we see that Gabe's spirituality relies on people connecting with one another in order to help one another. Finally, God rewards entities individually and collectively when they have helped each other and taken care of one another.
Teaching Others to Work With Your Speech-related Disabilities
After the focus group, I was reflexive about Gabe's interest and contributions to the spiritual conversations about Finding Nemo. I thought about how Gabe's speech-related disabilities make it difficult for many to understand him. I wanted to know more about how he believed God helped him to negotiate his speech-related disabilities. In his next individual interview I followed-up around Finding Nemo in order to learn more about his experiences.
Nadjwa: When we saw Finding Nemo, you said "Nemo had a little fin but that never stopped him." You said "Some people just take faith they got to trust the Lord." You were talking about how God helps you sometimes. Then I started thinking does God help you when you talk and people asked you to repeat yourself?
Gabe: Yes God helps me. I think it gets easier as I get older…Like when you keep on telling them over and over they might get it. I will just try to break it down. (I couldn't understand this last sentence.)
Nadjwa: Can you say that last part again? Gabe: (Speaking slowly and enunciating) I will just try to break it down. Break it down more…One of the biggest lessons I learned was how to teach people to understand me…first my mom and my sister did not know how to understand me. But as the months got better they got good. Mom used to say, "Why you be sad? The same thing happened to me." When she was young she used to stutter.
Gabe's spiritualities place him in relationship with other entities and they also consist of drawing on the (un)seen force of God who has taught him a major lesson in working with others. As a child Gabe manifests transformational coping skills which permit him to construct his speech-related disability as an opportunity of self-growth whereby he can teach others and impart useful knowledge (Faull & Hills, 2006). In the above story, we see that the entities with whom he is connected consist of making meaningful relationships with his mother who serves to provide social supports that augment his transformational coping skills (Specht, King, Willoughby, Brown & Smith, 2005). Gabe connects with his mother through the stories that she tells about her stuttering and as he grows more successful in teaching her how to understand him.
This spiritual connection informs his spiritual practices which include (re)telling stories told by his mom as a manifestation of family involvement to help him negotiate his disabilities. His mother provides an alternative to being sad which enables him to choose "faith" and God as a way to help him negotiate his lived experiences. Gabe clearly indicates that his spiritual practices include "trust[ing] the Lord" and believing that "God helps me." Hearing his story, one can see Gabe beyond his student identity as a spiritual boy with a speech difference who knows that God helps him to "break it down." Gabe's data mirrors the work of Specht et al's (2005) spiritual participants with disabilities who assert that all individuals are part of a larger system and that further knowledge, strength, and meaningful "interaction results in experience and knowledge of the commonalities and contrasts between our own and others' realities." (731). Thus, Gabe's spiritual identity increases along with his coping practices (Faull & Hills, 2006).
Through Gabe's story we learn that his life consisted of learning "how to teach people to understand me." Because his identities include having a speech difference, he is constantly forced to explain himself to people. This has been a life-long process for him that began in his home with his mother and sister and moves into his other worlds, including his research world. For example, I say "Can you say that last part again?" This is not the first time I have asked Gabe to repeat himself, for I am not always able to understand him. Once I asked Gabe "Can you tell me a time when you think God was here in your classroom?" He answered, and I thought he said, "while I was writing," but he actually said, "while I was fighting." It wasn't until later when I was telling Kevin something about what Gabe said that he corrected me, saying "not during writing, while I was fighting." At six Gabe has learned a lesson that many adults are continuously seeking to learn.
Drawing on Spirituality to Negotiate Speech-Related Disabilities in Interpersonal School Structures
The longer Gabe and I conversed, the more interested I was in understanding how needing to teach people to understand his speech shaped his life in school. I was constantly reflecting on the fact that I had been working with Gabe for four months and although I was much better at understanding him I still had difficulties. These difficulties were evident even during the previous conversation where I asked him to repeat himself. They were often evident when I transcribed the tapes and had to repeatedly replay Gabe's portions to ensure that I was documenting what he actually said and not what I thought he said. So I asked him:
Nadjwa: When you have a new teacher is it difficult?
Gabe: Sometimes. Mr. Williams was kind of like that. The first couple of months he didn't understand me, but as the months passed he got better and better.
Nadjwa: When we first started working together it was hard for me to understand you. I would ask you to repeat stuff. Now I don't ask you to repeat stuff as much. Sometimes it means people have to listen harder when they are not used to listening harder.
Gabe: Yeah, like when you are mad at people and you don't want to talk.
Nadjwa: When people are mad and they don't want to talk, they have to listen harder.
For Gabe, as for all children, one of the most significant interpersonal structures is the classroom teacher, whom children are interacting with for the majority of the school day. Gabe demonstrates that he is aware of needing to work with his teachers to negotiate the communication barriers between him and them. Gabe's story indicates that he worked with Mr. Williams and after numerous months passed, Mr. Williams was better able to understand him. Gabe's work with Mr. Williams represents the third component of the definition of spiritualities — the spiritual practices that maintain connections to (un)seen forces and/or entities created by those (un)seen forces. Gabe's spiritual practices of working with teachers and teaching them to understand him also reflects the sentiments of other spiritual people with disabilities who contend that "having a disability provides a route through which the individual with the disability and others both with and without disability can learn and grow" (Schultz, 2005, p.1289). In Gabe's case his growth occurred with being able to patiently work with yet another person to communicate his thoughts.
In Mr. Williams case, his growth came in being able to understand Gabe but also in being able to negotiate Gabe's speech-related disabilities among the other children in the class. Mr. Williams recalls how much he has grown because "at first I wouldn't call on him [Gabe] so much because it was hard for me and the other kids to understand him. But Gabe always had something to say and would sometimes talk even if you didn't call on him." Moreover, as a new teacher who also loved Gabe, Mr. Williams initially found himself talking with Gabe more in one on one conversations, inside class and after school. With Gabe's help he grew more into making Gabe a visible and audible member of the classroom by working more with all the children in the class to better their listening and communication skills.
Such data enable us to see that Gabe's negotiation of interpersonal school structures not only include enduring teachers, but also oppressive classroom spaces where children ignore or tease them because of their languages and abilities (Marks, 1997). Gabe confirms this teasing:
Gabe: Sometimes I get mad because some people understand me, but they just pretend that they don't understand me. Some people tease me about the way I talk and I don't say anything back. Sometimes there are things I want to say to them but I can't… Like stop teasing me, and if you don't stop teasing me you are going to get slapped in the back of the head. Stuff like that. I don't say it because I know I am going to get in trouble.
Nadjwa: Ok that is true (laughing), Do you ever have to talk to God about that or not?
Gabe: Yes, I do.
Richard: Do you ever tell the teacher on them?
Gabe: No.
Within this story Gabe illustrates spiritualities that connect both positively and negatively with classmates and other people. He asserts that he draws upon his spiritual practices to cope with people who tease him and seek to make him silent and invisible. What we hear Gabe clearly say is that despite the presence of God in one's life there are hard days when you have a speech-related disability because there are people who make you angry and who cause you to consider violence. Gabe is no anomaly in this regard. Butterfly, a participant in Schultz's (2005) research, stated "spirituality is the daily decision-making. It's not all pretty. It's realizing some days when you get up and things are great and its easy and then sometimes its hard….It's also realizing that there are no answers…there are no easy answers" (p. 1288). This theme about spirituality as daily struggle and constant decision-making was a major theme in Schultz's (2005) research. Gabe's stories confirm these constructions of spirituality and also highlight how spirituality provides help in challenging times.
For many spiritual people with disabilities, the challenging times include responding to people who antagonize, tease, belittle, or marginalize them. In such cases, they must constantly draw upon their beliefs that spirituality is an inner resource as well as a resource to be gathered from the larger environment (Schultz, 2005). Tapping into one's spirituality and implementing one's spiritual practice in difficult moments often consists of not only exploring but employing positive emotional outlets rather than reactionary negative behaviors to those seeking to inflict them with oppressive behaviors (Speraw, 2006). As in the case of Gabe, who must refrain from saying what he wants and enacting behaviors "like slapping people in the back of the head," some spiritual people with disabilities note that spiritual practices assist them in surviving daily aggravation and bringing about change in certain behaviors (Revheim & Greenberg, 2007).
Gabe's stories further our knowledge about some of the choices that spiritual children with speech-related disabilities make. By listening to Gabe, we hear that when he negotiates the interpersonal structures of teasing classmates, he consciously chooses to talk to God about these incidents and never to tell on the children to the teacher. It is possible that Gabe has also learned over time that there is no quick fix to having people tease you. It is also quite possible that at age six Gabe shares the view of spiritual adults with disabilities who posit that growing spiritually means "begin[ing] to see that they can choose to focus on inner spiritual strength when the problem cannot be readily fixed or controlled" (Revheim & Greenberg, 2007, p. 309).
Parting Thoughts
"Stuttering is not merely a speech impediment; it is an impediment in social living" (Van Riper cited in Swan, 1993, p. 139). Such impediments in social living, including those resulting from a range of speech disabilities beyond stuttering, are enforced when people exclude, isolate, devalue, and marginalize people with disabilities. Inequities persist as children with speech disabilities are silenced and marginalized within schools. In order to counter these injustices, researchers and educators must create more equity-oriented methodologies and pedagogies whereby they engage reflexive practices to see how and when they are marginalizing and/or allowing others to marginalize children with speech disabilities (Thousand, Greenberg, Nevin, Cardelle-Elawar, Beckett, & Reese, 1999). By listening to Gabe and other children we may reconceptualize traditional perspectives of children by re-envisioning what it is they know, teach, negotiate, and experience. In the case of Gabe we heard how he drew on his spiritualities to negotiate interpersonal relationships with both peers and teachers within his schooling experiences. We also listened to the lessons he learned and taught others as well as how he responded to "impediments in social living."
Gabe's data have implications for culturally responsive methodologies and pedagogies and support the importance of creating and implementing child-centered methodologies that highlight the agencies, negotiations, and experiences of children with speech-related disabilities. More information about how these children understand the interpersonal relationships in which they are involved, the school structures in which they participate, and the aspects of their cultures that sustain them will increase the ways in which educators and researchers can transform current school policies, practices, and structures. Such methodological transformations in the field of speech-related disabilities will ultimately mean that the theorizing about children with speech-related disabilities would no longer result from data collected from other's perspectives such as teachers, parents, and researchers; rather, children with speech-related disabilities would use their knowledges and agencies to construct themselves and portray their lived realities in more holistic manners.
Gabe's data purports implications for policies at the school-wide and classroom levels. At both levels it is necessary that administrators, educators, family members, and children enforce the right to manifest spiritualities and spiritual practices in school. At the school level administrators should provide all faculty with literature that highlights both faculty's and students' constitutional rights to bring their spiritual practices into public school. Administrators should encourage faculty to support and endorse their own, as well as children's, rights to make their spiritual practices visible as long as they are not seeking to convert others or to enforce one spirituality over another. Moreover, at this school level administrators should designate professional development sessions which would provide opportunities for faculty members to share their own spiritualities, converse about children's spiritualities, and delve more into seeing the ways spiritualities function as a resource within school structures. In order to implement equity-oriented policies within the realm of spirituality at the individual classroom level, counselors should draw on spiritualities within their counseling and peer mediators trained to see spirituality as a resource that they can share with others to use to negotiate school. Classroom teachers and librarians, as well as physical education and health teachers, should collaborate with each other and staff developers in order to make spiritualities more visible within their curricula and interpersonal relationships with children.
It is also possible to see the implications that Gabe's data has for disciplinary policies at the school and classroom level. It is urgent that educators, administrators, children, and family members do not underestimate the frequency of bullying, teasing, and oppressive actions that children with speech disabilities encounter on a daily basis or the negative impact that occurs. Strict disciplinary actions must be enforced in order to make it clear that such interpersonal actions are not school sanctioned and cannot be tolerated even at the seemingly surface level. Professional development sessions should support all faculty members in conducting thorough investigations, disciplinary consequences, and curricular planning to address children who inflict children with speech disabilities and children who might negatively retaliate from such inflictions. Imagine that Gabe is not always able to positively negotiate the teasing he receives and instead responds by teasing, hitting, or bullying others. His actions may cause him to receive suspensions, detentions, call homes, and other disciplinary consequences. Although it may seem that all actions call for equal consequences, if educators do not see the initial marginalization, teasing, and bullying or do not investigate the root cause of the retaliated behavior, then inequitable policy-making implementation will continue to occur. Educators must be more cognizant of when, where, how, how often, and why such behavior is occurring.
In many cases the root cause of such negative interpersonal social relationships is misunderstanding, fear, and ignorance. In such cases heightened awareness, education, exposure, and increased positive interactions with people with disabilities might decrease the negative interactions. One significant implication at the classroom level and the school level necessitates educators creating culturally responsive practices that make disabilities more visible in the classroom (Marks, 1997). Educators may bridge the gaps of misunderstanding and discrimination around disabilities by providing materials and texts that represent images and characters who have a range of disabilities (Mallory, 1994). On one hand, children with disabilities can see themselves or images of people similar to themselves who go through similar journeys, joys, and struggles. On the other hand, children who might have different disabilities or be unaware of some of the challenges, experiences, and struggles that children such as Gabe encounter would raise their awareness around issues that are seemingly taboo.
Classroom activities designed to heighten awareness of speech disabilities might include exposing children to research, discussion, and studies around disabilities. Materials such as books, media, and magazines should include people with speech disabilities in positive and frequent representations (Bredekamp & Copple, 1997; Tiedt & Tiedt, 1999). Teachers can collaborate with people with speech disabilities not only as information producers around their disability but as resources for knowledge on careers, lifestyles, and tutoring (Rogovin, 2001). Bringing people in who might share how they have responded to teasing, bullying, or marginalization in relation to their speech disability would provide insight to children such as Gabe as well as those who act oppressively. Spaces can be created through writing, music, and art for children to share feelings, concerns, and experiences around issues related to disabilities. In such activities children with a range of disabilities may illuminate awkward feelings, discomfort, uncertainties, injustices, and daily routines. It is also important that children with disabilities not be made token representatives who speak for all people with disabilities (Derman-Sparks, & The Anti-Bias Task Force, 1989; Saylor, 1995).
Other policy implications, specifically in the area of academic placement, also impact children like Gabe. Not every child will be successful in his/her negotiations with his teacher or have a teacher like Mr. Williams who improved his understandings of and abilities to communicate with Gabe. For these children, many will be constructed primarily by their speech disabilities and be cast in the physical and academic categories of those who have language barriers. When educators label children as unable to orally master the English language they are constructed as deficient, often ignored, and made invisible in classrooms. In many cases, children with speech disabilities are subjected to having their cognitive abilities made synonymous with their oral language capabilities. Teachers and administrators need to address these biases and examine if and when such discriminatory practices or occurring. Professional development topics may explore how teachers interact, support, and discriminate against children with speech disabilities when grading their work, asking them questions, holding conversations with them, promoting them to the next grade, and listening to their rationales. Children, such as Gabe, might also be given tips on how to work with teachers who discriminate and also taught how to advocate for more equitable treatment. Transformations must be made so that educators, researchers, and children become more responsible for bridging differences and instead of seeing differences as deficits. Without these kinds of transformations, children such as Gabe will remain inequitably impacted as they bear the burdens of being solely responsible for making sure they are heard and understood (Saylor, 1995).
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