“Freedom herself is very agile, very co-dependent, and is a lovely

person”: The school identities of high school age youth who use alternative

and augmentative communication

Andrew B. BennettSyracuse University, School of Education

Dept. of Cultural Foundations of EducationSociety for Disability Studies Conference

San Jose, CaliforniaJune 16, 2011

About this presentation

• Since it is often difficult for unfamiliar listeners to understand me, I have constructed this presentation in such a way that all my words are on the screen.

• I realize this mode of presentation can be problematic to some individuals.

• However, circumstances make it necessary to maximize access for most people, even though it may be in conflict with my politics (i.e. full inclusion).

• I’ve tried to make this presentation as accessible as possible while trying to balance that need with orally communicating effectively in my own voice. I also intend it to act as a critique of oral presentation.

A prelude

• Timmy was seated on a couch in one of the therapy areas with his mother, Carolyn, who was facilitating. Carolyn said “You have a project coming up in your history class soon, don’t you Timmy?”

• Timmy typed that he did. Carolyn and Donna Schaefer, the therapist, asked Timmy a series of questions about his assignment, such as when it was due, what it was about, etc.

• Timmy did not seem to always be engaged in the conversation, particularly as it moved forward. His eyes were darting about and he did not always seem to be looking at the screen.

A prelude

• In an effort to refocus Timmy, Donna scolded him saying, “Now cut that out!”

• Timmy’s behavior was deemed to be related to his autism, but I wondered if he might not either be bored or unwilling to talk about school and averting long discussion.

Research questions

• In this paper, I shall ask:– How are independence and co-dependence framed by

teenagers working toward communication independence?– How do the structures of high schools impact the identity of

high school students with speech disabilities?

– How do 14-18 year olds with speech disabilities frame their adolescent and school identities and intersections with other identities?

Methods

• In this study, I have utilized the principles of participant observation and semi-structured interviews with both the participants and their parents as articulated in Bogdan & Biklen (2007).

• For this study, I elected to talk to both the participants and their parents. Because I am not a trained facilitator, it would have been almost impossible for me to talk to the participants without someone to help. I was only able to get access to the speech pathologist’s office for observation and recruitment purposes, aside from one interview with Donna to gather information.

Methods

• Parents are also an important part of their child’s identity development (Sheridan, 2008, 214-216). A parent’s perspective on their child’s development, therefore, was important in discussing the child’s past because the parents had more information about the participant’s medical history and elements of their schooling experience.

• The participants were three high school aged boys (14-18) who have autism-related aphasia. The age range of these boys was chosen because there has not been much written about this age bracket, especially from a qualitative perspective.

Methods

• Previous studies quantitatively examined peer (Beck, Thompson, Kosuwan, & Prochnow. 2010) and family attitudes (Angelo, Kokoksa, & Jones, 1996).

• Ashby (2010) qualitatively looked at how normalcy is enforced in middle schools. However, the construction of identity by high school students with speech disabilities is a subject not addressed by the literature.

Methods

• These boys came from middle class, White backgrounds and were from either suburban or from small to medium size cities in the Northeast United States.

• I also interviewed their speech therapist Donna Schaefer.• Donna suggested each of the boys for the study.• She contacted each of the boys (so as to preserve medical

confidentiality) and their parents and I followed up with correspondence concerning the study once the boy and his parents had agreed to participate.

Methods

• Three patterns seemed to emerge: independence and co-dependence, schooling, and emerging teenage identity. I identified patterns in my field notes and interview transcripts that aligned with these categories. I examined these categories concentrating on how intersectional discourses fit into the lives of teenagers with autism related speech disabilities (Lesko, 2001, Sheridan, 2008).

Locating myself in the study

• As someone who is labeled as having a speech disability and an AAC user, some of the structure of speech therapy sessions, issues in AAC, and frustrations with not being able to communicate were familiar to me.

• However, I do not identify as autistic, did not start using AAC until I was an adult, was in the college preparatory track in high school, and have always used independent typing, so there were plenty of things for my participants to teach me about.

Alternative and augmentative communication (AAC)

• In educational systems, AAC has proven helpful, in many cases, in expanding literate citizenship, allowing the individual user to expand and use one’s vocabulary to express basic needs and, hopefully, one’s goals, feelings, desires, and thoughts (Miranda, 2003, Koppenhaver, Hendrix, & Williams, 2007).

Facilitated communication• Facilitated communication is a specific kind of AAC (Crossley &

McDonald, 1980, Biklen, 1990, Biklen, 1992, Biklen & Cardinal, 1993, Biklen et al. 2005).

• The method has been controversial with some maintaining the communication is not real (e.g. Calculator & Singer, 1992, Green & Shane, 1993, Calculator, 1999.

• As individuals emerge as successful communicators, these dismissals have had less appeal (Buekelman & Miranda, 2005).

• Some studies have suggested that people who use facilitated communication can eventually learn to type independently and/or with minimum support (Broderick & Kasa-Hendrickson, 2001).

Lifeworld development• I have chosen to investigate not just AAC systems, but also how these

systems affect adolescent identity. • The intersectional identity between adolescence and AAC systems is an

important one because it recognizes that these participants are not just people with disabilities, but also adolescents, with an emerging sense of independence, bodily changes, emerging identity, etc.

• I focus on how these individuals make sense of their lifeworld development.

• Lifeworld development looks at the way children and adolescences “uncover” their experiences, thoughts, beliefs, and existential realities (Sheridan, 2008, pg. 204).

Lifeworld development

• I focus on how these individuals make sense of their lifeworld development.

• Lifeworld development looks at the way children and adolescences “uncover” their experiences, thoughts, beliefs, and existential realities (Sheridan, 2008, pg. 204).

• Lifeworld development is concerned with:

internal and external resources, multiple systems level (individual, group, family, organizational, community, cultural, and political) and influences such as personal motivations, interpersonal and intrapsychic forces, intergroup tensions, imbalances of power, resources, and opportunities (ibid)

Intersectional identities

• Identities are constructed based upon an individual’s total experience, which includes all the identities they might have.

• Feminist disability studies scholars, in particular, have emphasized how one identity might affect another identity.

• Disability identities are, therefore, not universal (Knoll, 2009).• For example, being a female with a disability might

significantly differ than a male’s experience because of the way male and female bodies are socially constructed (Fine & Asch, 1988, Garland-Thomson, 1997). How individuals see themselves and their bodies depends upon such things as race, social class, gender, and nationality (Garland-Thomson, 1995).

Intersectional identities

• Part of the reason why this is important is different types of bodies can be oppressed or not oppressed in different ways, so intersectional identities are important to how bodies are seen and experienced (Wendell, 1989).

Social construction of adolescence and its relation to dis/ability studies

• Like disability, adolescence is also socially constructed. • Lesko (2001) wrote about how adolescence is constructed as a

technology of upholding White, middle to upper class, masculine conceptualizations of the body.

• Those that violate these norms and/or disrupt the system are seen as deviant and troublemaking, similar to studies by Goffman (1963), Davis (1964), and Scott (1969).

Social construction of adolescence and its relation to dis/ability studies

• Other identities can provide or subtract social capital (Coleman, 1989).

• From a disability identity standpoint, this stigma can be altered by “claiming” disability (Linton, 1998) and removing the rhetoric of thinking and writing about disability away from positivist science (Smith, 2006/2008), both of which serve to disrupt the values of the patriarchy, which utilizes stigma as one of its technologies.

Why lifeworld development is a good tool of analysis

• Lifeworld development looks at the broader picture of an individual’s world.

• It looks at how individual’s construct their social worlds and how individual’s find their place in the world.

• Since adolescence is constructed as being a time that an individual can develop (Lesko, 2001), it is important to get a sense of the totality of what the individual’s social world is and how that world has affected them (Sheridan, 2008, 204-216).

Independence and co-dependence• One day, Luke was typing with Donna. Luke

typed “Those who can; can do it alone.”• What Luke meant by that was that he was

discouraged by needing to use facilitated communication.

• Luke desired to be able to type independently, if not to be able to talk.

• However, Luke’s statement also seemed to mark the sort of values that society puts on him.

Donna’s response to Luke

• Donna, however, encouraged Luke to overlook this issue. She reminded him that they were working toward independence and that one day he, too, would be able to type and communicate on his own.

• Luke needed to be reassured that what he was doing was okay. An ablest society (Hehir, 2005) tells Luke and Timmy that they need assistance, but paradoxically, at their age, they should not need it, privileging “those who can” over “those who can’t or need assistance

Luke’s response to Donna

• Luke took this in stride. He responded to Donna by typing “Freedom herself is very agile, very co-dependent, and a lovely person.”

• Luke’s personification of freedom in this moment served as recognition of Donna’s views and perhaps an articulation of his own views apart from pressure to fit into an ableist world.

Independence and co-dependence• Luke also recognized freedom as being

“very co-dependent”. • Schools, however, tend to insist on an

agenda that emphasizes independence.• This idea relies on the rugged, but

controlled individualism often encouraged in adolescents, especially boys, by such individuals as Lord Robert S.S. Powell, founder of the Boy Scouts, and U.S. President Theodore Roosevelt (Lesko, 2001, 55, 60), with the idea that an individual would be independent, but use that independence to serve the state.

Independence and inter-dependence

• Not recognizing and encouraging students with disabilities to take advantage for opportunities for inter-dependent relationships, plants the idea that “Those who can; can do it alone” into their mindsets, depraving them of what, for some people with disabilities (and without) is a useful life skill: knowing areas where one needs help and having the skills to ask for them.

School structures

• School structures play an important role in shaping the experiences of youth.

• This is particularly true for individuals with communication differences and other disabilities.

• Luke’s mother described a fairly inclusive elementary school environment, but this changed when Luke was in middle school.

• “The kids were expected to stay still and stay quiet and that was something that he couldn’t do very well.”

Secondary Schools and body watching

• Luke’s mother believed that the school was willing to be tolerant of his disability when he was younger because “When they’re younger, they are all running around”, but when Luke and his classmates got older, and he got bigger, this was no longer tolerated.

• One of the hallmarks of modern middle schools is that they allow for management of students, including discipline (Lesko, 2001, pg. 96).

• Since Luke could not meet his school’s expectations because of his disabilities, his body was more closely watched.

Valuing and privileging of high ability learners

• Luke’s parents also saw the school as not caring too much about his education. Luke’s mother remembered:

The school basically gave up on his education. And that seemed to really frustrate him. They were basically treating him like he was retarded and the teachers basically said that

learning didn’t really matter for him. And that was wrong.

• This school district apparently had made a decision that education is only for certain groups of people.

Constructions of smartness and the “great chain of being”

• This school district apparently had made a decision that education is only for certain groups of people.

• Using their authority as educators (Mehan 1996/2009), the school district tried to segregate out certain individuals with disabilities, including communication related disabilities, from participation in education.

• The school’s choices are related to the construction of “smartness”. Luke, apparently, did not fit into their profile of an individual that was worthy of a meaningful education.

• This might be related to a disability link to the Great Chain of Being (Lesko, 2001, pg. 37) wherein racial, sexual, and class deviants were vilified.

Schools, merit, and hyper-masculinity

• The school district, according to Luke’s mother, the quality of education for highly achieving students was quite different than the one offered for students identified as needing special education services.

We live in Yankeetown, in Doubleday County. Usually, our school district is really good and it really works well for

high achieving students. Our other son is a good student and it is a wonderful school district for him, we certainly wouldn’t change it in terms of his experience, but for special education, it isn’t very good at all. They really don’t care very much at all about those kids. And my husband and I were getting increasingly frustrated with our local district.

Schools, merit, and hyper-masculinity

• The school was interpreted by Luke’s mother to not only provide bad education to special education students in regards to their curriculum, but also to be dismissive of those students personally, following a model that privileges those of “high ability” while vilifying those lacking ability, something not unique to hyper-masculine school culture (Lesko, 2001, p. 167-168).

How schools form identities• Since students are required under law, in the United States, to attend

school until they reach the age of 16, it inevitably affects a portion of their day and, thus, is an influence on the lives of students. Luke’s mother related:

Not only were they failing to educate him, they were not letting him communicate, not letting him show his competency. The district basically said that there would be no facilitated communication... We were working with people from the local ARC and with Donna to try to get him facilitated communication, but they were just not interested at all, very adamant against that. We could see that Luke was not very happy at the school. He was acting out a lot and writing things with Donna like “I’m trapped” and “I feel like I’m in prison”.

Denial of Facilitated Communication and Renewing Masculinity

School structure and identity

• Luke also presented his own views of the schools as an emotional experience.

• He typed, when asked about his school experiences, that “his thoughts are like crying tears”.

• Luke’s non-verbal actions also spoke to his words. When Luke started to think about his school experience, he became visibly agitated. We were all sitting at a table. Luke intensely gripped the table and his whole body seemed to quake. It took him a very long time to write out even a second that “made sense”.

The impact of inclusion and utilizing FC

• Other participants in this study had a somewhat better experience with their school districts.

• Timmy, for example, was included in history as a trial basis for further inclusion in academic classes. This was not full inclusion, but the school was working on getting him fully included in academic classes.

• Tony first goes to a special education classroom, but in regular classes most the where he communicated with other students, accompanied by paraprofessionals who help him throughout the day. These schools allow more leeway in terms of who is seen as competent. Both have fairly good experiences in school.

Conclusions

• As these teenagers work toward independence with their typing, they dealt with socially constructed conceptualizations of their disability, how to accommodate the disability, and their adolescence.

• As these boys enter emergent independence in communication and get ready to start their adult lives, they were heavily influenced by their quest for independence, identity issues related to schooling, and issues related to the intersection of adolescence and disability.

Conclusions

• School environments often played a significant role around the formation of particular identities.

• Schools, for example, sought to control bodies, something that was heightened as the students got older.

• As the schools began to watch students more closely, how the school responded to those changes was linked to how the student experienced school.

• Schools engaged in the re-masculinization of schools tended to not provide good environments for these students, while schools that were more conducive to inclusive environments provided more positive spaces for learning and healthy development.

Conclusions

• Being a teenager with a disability meant that students were subject to surveillance on multiple fronts.

• As these students developed into young men and developed independence, they had to negotiate both adolescence, disability, and the re-masculinization of their schools, while also managing their White, male, middle class identities. These other statuses, however, were secondary that enforced perfected hyper-masculinity.

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