Positionality

106

and Garman (1999) go so far as to assert, “The researcher is as much a part of the inquiry as the intent of the study and inquiry process. In fact, the researcher’s thinking lies at the heart of the inquiry” (p. 24). Every decision made, participant selected, interview question formed, observation conducted, option excluded, and meaning made is done so by an individual or individuals inextricably fettered to his/her own history and view of the world. Acknowledged or not, subjectivity and bias are unavoidable.

With this in mind, several efforts previously mentioned help to minimize researcher influence over the process and results. An additional measure often offered in qualitative studies is a disclosure of positionality. Positionality refers to one’s sense of self and place in time and space. For the researcher, statements of positionality allow for the disclosure of personal or professional information that may be viewed by outsiders as corruptive to the integrity of the research process and results if left unrevealed. Revelations may or may not include the sharing of one’s knowledge areas, values, beliefs, experiences, professional and/or social status, ability/disability, nationality, gender and so on (Banister et al., 2011, pp. 91-92). These disclosures are particularly important in inquiry efforts toward the

empowerment of marginalized populations. Often referred to as “emancipatory research”, studies such as these, by nature, run a high risk of being perceived as biased or agenda driven.

Along with disclosures, statements of positionality should reflect persistent self- assessments and a recognition on the part of the researcher as to his/her influence on the process and outcomes. In qualitative research, the researcher’s role is often one of altering dynamics, highly dependent on and influenced by context and perception and the projection of the relationship between and by researcher and participant (Ngo, 2010, pp. 111-122;

Mertens and McLaughlin, 2004, p. 108). As Ngo (2010) experienced while conducting an ethnographic study of Lao American students at an urban public high school, the intentional and detached identity that many researchers attempt to portray in data collection efforts is difficult to maintain. She stated, “During my research I developed relationships with students…where we were engaged with each other as human beings, sharing moments of silliness and sadness, as well as hopes and fears.” Although she had done what she could to prepare for the study, the human intimacy experienced and connections formed were

unexpected and at times, unsettling. In attempt to characterize her complex and shifting role as researcher, Ngo reflected,

I am once again confronted by the inadequacy of our discrete categories for identity. My interactions, conversation and positions…cannot be described by stable, cohesive categories of “researcher,” “mentor,” “confidante,” “adult,” or “friend.” …I was all of this and more, something that was “not quite the Same, not quite the Other.”16

(p.121)

The tensions inherent in negotiating the line between insider/outsider roles in research initiatives are well documented. While the underpinnings of social science are grounded in the work of those who have absorbed insider identities within the research setting, Lincoln and Guba cautioned that by “going native” researchers may risk their ability to be objective. Kanua (2000) however, points to the self-reflective “native researcher” as advantaged in that he/she is “grounded in implicitly and situated at all moments” within the research process (p. 441).

The following chapter invites the reader into the lives of four young people with

16

This is a reference to work by Trinh T. Minh-ha, a Vietnamese-American filmmaker, anthologist, composer, and post-colonial theorist. Trinh’s draws attention to the tensions and fluidity that exist between

108

I/DD. In doing so it also draws the reader into my world. The histories and lives shared are not simply the product of data collection activities; they are a reflection of relationships formed and lives intertwined by common experiences, understandings, and frustrations. As a younger sister of a sibling with I/DD, I learned from a young age that the world is not always a kind and just place for individuals with I/DD. Eighteen months older, my sister was first identified with “mental retardation” when she entered kindergarten and was soon placed in a self-contained special education class. I was seven when I first heard the word retard hurled as an insult carelessly across the school lunch room. I have little memory of my parents sharing information about my sister’s cognitive challenges at this early age; still, I remember this day and I knew that this word, somehow, related to my sister. It stung.

Growing up, I watched as my sweet-natured and overly trusting sister endured false friendships, bullying from school mates, and harassing prank phone calls. In school, I saw her grow in confidence with incredible teachers who helped to develop her reading, writing, and life skills, only to lose these same skills a year later when placed with a less than

motivated teacher whose idea of academic instruction largely consisted of showing videos and coupon clipping. I watched my parents advocate eloquently and not so eloquently, addressing insensitive remarks, ignorance, and prejudice from educators, medical professionals, and others in our community. These early experiences influenced my educational and professional trajectories, leading me to pursue an undergraduate and graduate degree in Special Education. During this time, I also served as a group home manager for individuals with I/DD and upon degree completion, I worked as a special education teacher for a number of years. Apart from my LIS doctoral program, I spent a year

in the LEND training program17 and have enjoyed long term involvement with Special Olympics as a coach.

I feel my personal and professional experiences have greatly enhanced my role as a researcher. In this dissertation research, my positionality afforded me an understanding of the challenges individuals with I/DD and their families face. Through sharing my

background and personal experiences, I feel that I was able to more easily connect with participants and their families. Rapport, trust, and meaningful relationships were developed over a short time and I was entrusted with stories perhaps not otherwise shared. My

educational background in K-12 education, disability studies, and library and information science provided me a strong understanding of theory and practice, informing all stages of the research process from study design through analyses and reporting. My teaching

experience enabled me the skills to communicate information and engage participants in the research process in meaningful ways. My background in special education and previous teaching experience also afforded me a working knowledge of special education procedures including the IEP and transition processes and related documents. My professional

background also contributed to my credibility with school district personnel and educators, affording me access to schools, classroom instruction, and community-based activities.

While I consider my positionality a strength, I also recognize how my previous experiences and viewpoint pose the potential for bias as a researcher. For this reason, many measures were taken to ensure the trustworthiness of the study’s findings, including data triangulation, “thick” descriptions, member-checks, peer-debriefing, and reflective

17 _{LEND is an acronym for Leadership Education in Neurodevelopmental and Related Disabilities and is a} federally funded program that provides interdisciplinary leadership training at undergraduate, graduate, and postdoctoral levels through University Centers for Excellence in Developmental Disabilities (UCEDD).

110

journaling. Despite these insurances, a claim of objectivity would be both inaccurate and diminishing to my lived experience and those who share my community. One only has to look at the recent statistics on adult life outcomes to understand the injustice individuals with I/DD face on a daily basis. This research is personal and subjective; however stating so makes it no less accurate or less trustworthy.

Case Studies Introduction Chapter 7

You never really understand someone until you consider things from his point of view…until you climb inside of his skin and walk around in it.

Harper Lee, To Kill a Mockingbird

This chapter invites the reader into the lives of Jack (age 17), Marie (age 23), Ben (age 21), and Bella, (age 19) as a means to enhance understanding of the everyday life experiences and needs of young people with I/DD and the significance of cognitively

accessible information. The case narratives will reveal several similarities between the four participants. They live with their families in the same small community and all have well- educated and involved parents. Three of the four participants have attended the same high school and all regularly take part in common activities through several local non-profit organizations. Having said this, the narratives will also reveal that Jack, Marie, Ben, and Bella are four highly unique individuals with distinct interests, strengths, talents, preferences, challenges, and needs; and their shared label of I/DD offers only a limited degree of

commonality.

All four individuals played a central role in the research process, contributing to data collection, offering considerable time and input, and opening their daily lives for observation and study. Beyond interviews and observations, the four participants also initiated contact to share information about their lives and experiences through email, text messages, phone calls, Facebook and mail. Toward the construction of their narratives, all took responsibility

112

for creating and assigning pseudonyms for their self and others depicted in their stories, and two participants shared drawings about their lives incorporated into their narratives. Finally, all took part in member-checking activities to ensure accurate representation of their lives and perspectives.

The four case narratives rely upon “thick descriptions” to capture and share individual histories, intricacies of everyday life, and the viewpoints of individuals seldom represented in the research literature. While family and teacher participants helped to provide the narrative structure, it was through the voices and participation of Jack, Marie, Ben, and Bella that connections were formed and meaning found.

7.1 Introducing Jack

“Can I tell you a story?” he asked. This was my introduction to Jack and a question I soon became accustomed to hearing during my visits with the eighteen year old. Jack is a storyteller. At 6’1 and 210 pounds, he brings his tales alive, stepping into his characters with animated voice and grand gestures – a lunged chop at an imaginary beanstalk or a gentlemanly bow to the fair maiden. With enthusiasm unmatched, Jack welcomed me into a world of beanstalks, magical harps, a huffing and puffing wolf, and a host of other familiar characters.

When not sharing his stories, Jack can often be found walking about in whispered voice crafting and re-crafting his stories in his mind. “I like telling stories to myself,” he tells me. However, it would be an understatement to say that these storylines and

characters are simply a preferred pastime. Rather, they have become an interwoven and often consuming facet of Jack’s everyday life. Jack has autism. Fixation on a particular interest area is typical of many individuals with autism. If left to Jack, storytelling will dominate free time, attention, and conversation to the exclusion of all else.

Jack’s Individual Education Plan (IEP)18 specifies his primary area of eligibility for special education services as Autism Spectrum Disorder (ASD).19 ASD can be defined by a set of behavioral characteristics ranging from mild to severe. Identifiable characteristics

18 _{An IEP is a federally mandated document individually constructed for each public school student who} receives special education and related services. It is a collaboratively composed plan of action, reviewed yearly, identifying goals and short term objectives detailing methods for measured achievement toward desired academic and behavioral growth. The collaborative team charged with this process may include the special education teacher, parent(s)/guardian(s), district administrator, transition facilitator (for students 16 years of age), and the student.

19 _{A 2012 CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network report on the} prevalence rate of ASD estimates 1 out of every 88 children are on the spectrum. ASD crosses all racial, ethnic, and socioeconomic groups and displays an occurrence four to five times higher in boys (1out of 54)

114

may include:

• early language delay

• difficulties with social interaction • poor eye contact

• repetitive use of language

• repetitive routines and/or behaviors

• self-stimming behaviors such as hand-flapping, twirling of objects, spinning, etc.

• fixations on objects and/or special interest areas

• splinter skills – referring to an uneven profile of abilities with considerable strengths in one or two skill sets

• sensory issues – difficulty filtering sensory input, such as bright light, certain noises, types of touch, various tastes and textures, etc.

• strong rote memory skills/difficulties with abstract concepts

Characteristics may present themselves in a variety of manners and to varying degrees and are not, necessarily, collective in their manifestation. They may range from a subtle quirkiness in personality to a complete disconnect from the social world. When asking Jack to share a little about his autism, he responded, “My autism means that I am a good boy!”

Jack lives at home with his mother, Andromeda and older brother, Perseus. Jack’s father lives out of state and is not active in his life. Jack attends the local high school and receives instructional and behavioral support through the special education program. As a single parent, Andromeda works two jobs. She is also active in local advocacy efforts for

individuals with I/DD. Jack’s brother Perseus, attends college and also contributes to the family income through part-time work. Given the extent of Jack’s need for supervision and behavioral support outside of the school day, the family receives fifty-five hours of home support each week. Support is provided by four direct care providers, with only one providing support at any given time. They assist Jack with self-care needs, life and vocational skill development, and provide transportation to and from many of his extracurricular activities. Three out of the four care providers are male. Andromeda commented on the benefit of having male care providers as positive role models for Jack, noting that they, along with Perseus, have been especially helpful in dealing with issues surrounding puberty and self-care as Jack transitions into young adulthood.

During initial interviews, I began learning about Jack by asking a question: “What words describe Jack?” I presented this question to Jack, his mother, brother, and teachers. These were their responses:

Jack: brave, concerned, good, smart, steady

Andromeda (Jack’s mother): exuberant, kind, polite, fun

Perseus (Jack’s brother): innocent, energetic, opinionated, adorable, comfortable in his own skin

Jack’s teachers (combined response): joyful, exuberant, polite, flexible, and affectionate

Jack’s Individual Education Plan (IEP) and Person-Centered Plan (PCP)20 provide a snapshot view of Jack and a glimpse into his everyday life. His IEP states:

20 _{Person-centered plan (PCP) is a life planning model collaboratively designed around the individual, his/her} interests, strengths, and needs. These plans and processes are constructed and implemented in separation from the educational environment. The PCP team is typically comprised of the individual, his/her family members and/or any other significant relations in the person’s life, a home care provider(s), and led by an

116

Jack is friendly, assertive without being aggressive, and shows willingness to compromise. He demonstrates a well-developed thought process, a good use of vocabulary, a great sense of humor, logical thinking, enthusiasm, and a love of learning. Math and Reading are considered relative strengths for Jack. Ms. Aurora [Jack’s teacher] reports that Jack continues to develop his team playing skills. During his leisure time, Jack enjoys playing with Legos, Wii, Mickey [Mouse], playing the violin, and playing the sports of tennis, racquetball, swimming, and yoga.

Jack, Andromeda, and a care provider identified additional areas of special talents and traits, reported in Jack’s PCP:

Jack: Telling stories, watching movies, playing on the computer, swimming, tennis Andromeda: He tells great stories, he tries to please, and he follows written directions well.

Care provider: Jacks' got a great memory, vocabulary, enthusiastic personality; he has a remarkable talent for storytelling, great rhythm, good musical ear, quick learner at violin. Excellent skills in narrative innovation, a fine swimmer, excellent in problem solving strategies.

In 2007, Jack took part in a comprehensive evaluation measuring his IQ, academic aptitude, and adaptive behavior skills. His evaluating psychologist provided the following summary statement:

Jack was functioning within the Very Low range of intelligence on the DAS-II.21

21

The DAS-II refers to Differential Ability Scales 2nd Edition and is a norm-referenced test individually administered to assess cognitive ability in areas of verbal and visual working memory, immediate and delayed recall, visual recognition and matching, processing and naming speed, phonological processing, and

He showed a significant weakness on spatial abilities. As measured by the WIAT- II,22 Jack’s performance was Borderline in Reading and Mathematics, and

Extremely Low in Written Language. The ABAS-II23 rating scale completed by Jack’s teacher and mother indicated that his adaptive functioning was generally within the Extremely Low range. Ms. Aurora, classroom teacher, stated that these test results still appear to be accurate. She did, however, just complete the KTEA24 and the results of this test yielded a grade equivalent of 6.2 in reading, a 3.5 grade equivalent in writing, and a grade equivalent of 5.8 in Math.

7.1.1 Jack’s early years. Once upon a time, a baby was born –Jack. Andromeda, Jack’s