TextContent 1 | - Freelance Writer
Aug 27, 2018 | #1
Although helping professionals who work with individuals in need of augmentative and alternative communication (AAC) should, it seems, be aware of the confinement conferred upon their clients by virtue of the label "disabled," they sometimes (either thoughtlessly or out of biased assumptions) act as if their students or clients have no sex, no race or ethnicity, no socio-cultural background, and/or no other demographic identifiers beyond the fact that their ability to communicate is compromised. While such identifiers might seem virtually irrelevant given the primary urgency of the disability, the reality is that one cannot and should not assume such irrelevance. This is partly because speech and language pathologists, special education teachers, and so forth should at all times advocate for a complete view of persons with severe disabilities (i.e. that they are fully-dimensional individuals), but also because, especially for underage persons with disabilities, their supportive family members are most often highly involved with their care, and it makes sense that their particular socio-cultural and socio-economic identifiers would come into play during treatment, whether or not these things are issues for the individuals themselves. Thus, attention should be paid to multicultural issues when using AAC with students/clients, as one way or another, they will most likely become significant.
This paper will review some of the literature concerned with multicultural issues in augmentative and alternative communication to investigate their impact upon same, as well as the extent to which multiculturalism is (or is not) interwoven with the use of AAC. For this purpose, the term "augmentative and alternative communication" (AAC) will be defined as "the use of manual signs, communication boards/books, high-tech electronic devices, and other forms of unaided and aided communication" (Binger & Light, p. 200). More specifically, "[a]ugmentative often refers to the supplementation of, or addition to, natural speech and/or handwriting to enhance communication.... [and a]lternative refers to the substitution of another form of communication for natural speech and/or handwriting" (Liboiron & Soto, p. 71). Persons with disabilities will refer to underage people, only, for the purposes of this paper, as the issues involving adults can be somewhat different and focusing the research in this fashion made sense, given the available literature. Finally, the term "multicultural" as used in this paper will transcend its typical "race-only" connotations and refer to the acceptance and celebration of true diversity in all its meanings, from sexual orientation to class and including, of course, race, religion, and ethnicity.
Who are the students with disabilities who utilize augmentative and alternative communication technologies? Binger and Light investigated the demographics of preschoolers in Pennsylvania who were receiving special education services, and discovered that a full 12% were in need of one or another form of AAC. This finding is significant in itself, as this represents a large percentage of the population. However, just as significant is the finding that these students come from a wide range of cultural backgrounds, showing a similar distribution to that of the "general" student population; this is important because "researchers have stressed the importance of addressing the specialized communication needs of children from diverse backgrounds who need AAC (e.g., Soto, 2000)" (Binger & Light, p. 201). Such information is also important to collect because it informs future research into the cultural diversity of students with disabilities who are in need of AAC. Specifically, the researchers found that out of 1,009 speech and language pathologists who returned the survey, 84% of students were of European-American descent; 3% were of Latin-American descent; 10% were African-American, 2% were Asian-American, and less than 1% were of Native American descent. They also found that 71% of the students were male, supporting previous research indicating that males exhibit a higher prevalence of disabilities which call for the use of AAC.
Because this distribution (other than that of sex) essentially parallels that of the United States as a whole, it is critical for helping professionals to be educated about the various issues inherent in working with students and their families who come from a wide variety of cultural backgrounds. Indeed, in their review of best practices in the provision of AAC services to students with severe disabilities, Calculator and Black include the need for AAC-related services to be consistent (compatible) with the cultural values of both the student as well as the student's family (p. 336). This is critical because there needs to be a flow in terms of use of the AAC between the school and home environments, and if parents and other familial support persons are not "on board" with the program, but instead revert back to more "natural" means of communication at home, the student may not learn to use the AAC as effectively as possible. The idea is for the student to generalize the use of AAC, and because culture is a large part of who we are (both students as well as other family members), then it must be integrated into the AAC plan.
Naraian echoes this assertion, specifically because communication - literacy - in general is intimately connected to cultural values; that is, how we communicate is rooted, in large part, in who we are as a member of one or more specific cultures. Thus, the use of AAC must be a "socially and culturally situated practice" having as a goal the "'generalized ability to use signs/symbols for intrapersonal and interpersonal purposes within specific cultural practices'" (van Oers, p. 303, as cited in Naraian, p. 255). Naraian makes another point related to multiculturalism as well, which is that the very use of AAC itself can serve to alter culturally-situated narratives of disability, particularly of severe disability; when, for example, other students can see that their peers who otherwise have no means of communication are increasingly able to participate in classroom activities via AAC, they have a chance to shift their own idea of the "culture of disability" from one of veritable invisibility and silence to one of connection and ability. In other words, the cultural mores of disability are transformed when people realize that severe disabilities do not necessarily render people incapable of thought, communication, and engagement with the world around them. Thus, at root, the use of AAC in itself is a culturally-situated activity.
However, it is possibly more important to uncover just how, specifically, cultural differences might impact in a practical fashion upon the use of AAC. To investigate some of those practical issues, Kent-Walsh, Binger, and Hisham compared three European-American and three African-American parents of students participating in a training program designed to help them better use a particular AAC in the context of story-book reading. Whether or not a child has disabilities, the use of story books to enhance and cultivate communication skills is critical in the early years. Unfortunately, however, while parents of children without disabilities read to their children tend to ask questions about the books being read, thus encouraging their children to expand their understanding of narrative and other communication mores via the use of open-ended questions (for example), parents of children with disabilities tend to take the lead, ask yes/no questions, and otherwise discourage them from engagement with the text (Kent-Walsh, Binger, & Hisham). This is unfortunate in itself, but particularly troublesome given that for children who need AAC, the potential inherent in story-book reading can be even more instrumental in encouraging communicative growth, for several reasons. First, the vocabulary in such stories tends to be predictable, thus enabling it to be programmed into speech-generating devices (p. 98). Second, while engrossed in the story, children need not pay attention to anything beyond developing communicative skills (as opposed to, for example, motor skills), thus enhancing and deepening their focus on language (p. 98). Third, the AAC device itself can be used to combine vocabulary words into concepts, thus taking a child's communication skills to the next level.
Kent-Walsh, Binger, and Hisham did not modify their study to accommodate the different cultural styles inherent in story-book reading between the two groups studied because they wanted to discover any existing differences. What they found is interesting. Both sets of parents (African-American and European-American) began the program with zero use of "communication partner interaction strateg[ies]" (p. 102), they all ended the program with high levels of use (between 90% and 100%). In all other aspects of the training and practice stages of the program, the parents were similar as well. The only culturally-relevant difference was that the African-American parents voiced appreciation at the inclusion of a particular book which they felt resonated with them more than, say, "Dick and Jane" might have done.
Given that the inclusion of books written from a wide variety of cultural perspectives is now commonly understood to be important to make literacy appealing to a wide variety of students, this makes complete sense. In the specific context of AAC, others have noted the culturally-relevant potential inherent in storybook reading, noting that "allows for 'cultural variation in both the goals of development and the means by which children achieve a shared understanding with those who serve as their guides and companions'" (Rogoff, 1990, p. 8, as cited in Soto and Liboiron, 2006, p. 70). However, the relative lack of widespread significant differences between the two groups of parents speaks to another often-ignored aspect of multicultural awareness, which is that while some aspects of communication are culturally-dependent, others are not necessarily so; it is critical to move beyond identity politics in our perceptions of people from various cultural backgrounds to ensure that while we do not attempt a reversion to "color-blindness" (a.k.a. treating everyone as white), we likewise do not place such monumental importance upon culture so as to miss critical commonalities.
There do exist some cultural differences that impact upon the use of AAC, however. Bailey et al (2006) included socio-economic status (SES) in their investigation of family members' perceptions of AAC. Nicki and Laverne, whose highest degrees of education are grammar school and high school, respectively, tend to leave decisions about particular treatments to the experts, while Penny and Sandy, in possession of bachelor's degrees, take more control over their children's treatment options and don't always consult their teams. The sense of empowerment necessary to interact as Penny and Sandy do is often associated with higher levels of education which, in turn, are often associated with higher levels of SES. Finally, Binger et al studied Latino parents to see whether a specific AAC-related instructional program would be as resonant for them as it is with European-American parents. The researchers found that while AACs are not "really within anyone's culture" (p. 236), there were definitely some cultural-specific differences among the Latino parents. First was a decreased tendency to use the AACs at home as compared with other parents (p. 326). Second was the issue of eye contact; specifically, eye contact tends to be correlated with discipline for some Latinos, and so a tendency to avoid eye contact was more pronounced (and contrary to the most effective use of the program) (p. 236). Third, many Latino cultures tend to be more oral than written in terms of story-telling to children, and that in itself can be a barrier to effective implementation of the AAC (p. 236). Having said these things, all parents reported satisfaction with the program as it was, and all students showed progress.
Perhaps the most interesting information to come from this review is that multiculturalism, per se, does not appear to be as relevant a consideration among students who use AAC as it is among caregivers of students who use AAC, particularly parents. This is an important finding especially one of the effects was a variation in degree of the use of AACs at home, and such use is critical to ensure a consistent flow of practice on the part of the student to maximize the treatment outcomes. However, another effect - that of ensuring that texts are culturally appropriate - is more relevant for school-based professionals, as it can be safely assumed that parents will choose culturally-relevant books on their own. Thus, more research is critical to determine whether or not caregivers in the school setting are cognizant of students' cultural backgrounds so as to ensure cultural relevance; partly to honor the students' diversity, and partly as a way to keep parents on board with the treatment plan to ensure consistency between environments.
It is also the case that socio-economic class - an often-forgotten aspect of multiculturalism - plays an active role in determining levels of parental participation in ACC-related treatment plans. It is important for all parents to feel empowered to make suggestions about, and engage in, the use of AACs along with their children, from all class backgrounds. Class, as Binger et al. noted in discussing the limitations of their study, might well have had an impact on its results; all of the parents who did well with the AAC program were "highly acculturated" (p. 335) and thus not necessarily from a low SES background. Class may well also play a role in how strongly parents advocate for their children to receive the best possible care vis-a-vis AACs; how well they know how to navigate the system; whether or not they can make meetings at school (given often conflicting work schedules as well as a relative inability to take time off work); and in other areas as well, all similar to the kinds of class-related issues that affect education in general.
On balance, the most striking finding is a relative dearth of findings - relative, that is, to those associated with multiculturalism and general education. It is very likely that a focus on the disability of the individual has trumped other multicultural issues in research studies, and this makes sense to a degree; but it is incumbent upon augmentative and alternative communications researchers to more fully investigate the issue of multiculturalism in the context of both users of AAC as well as caregivers of same. Here, as well, the definition of caregiver needs to be expanded to include all caregivers, including educators and speech-language pathologists, as it may be argued that their interactions affect users of AAC as much as those of parents. Finally, far more research into how multicultural issues affect users of AAC must be undertaken to have a full understanding of them. For such research, highly competent adult users of AAC should be the primary participants, as they would be better positioned to give meaningful and informative feedback. Perhaps then we will have a much richer understanding of the issue of multiculturalism in augmentative and alternative communication. For now, we must simply assume that these tantalizing glimpses into this issue indicate more substantive effects, and undertake therapeutic AAC-related interventions with the same kind of cultural sensitivity accorded to other educational and healing pursuits.
References
Bailey, R.L., Parette, H.P., Stoner, J.B., Angell, M.E., & Carroll, K. (2006). Family members' perceptions of augmentative and alternative communication device use. Language, Speech, and Hearing Services in Schools, 37, 50-60.
Binger, C., Kent-Walsh, J., Berens, J., Del Campo, S., & Rivera, D. (2008). Teaching Latino parents to support the multi-symbol message productions of their children who require AAC. Augmentative and Alternative Communication, 24(4), 323-338.
Binger, C., & Light, J. (2006). Demographics of preschoolers who require AAC. Language, Speech, and Hearing Services in Schools, 37, 200-208.
Calculator, S.N., & Black, T. (2009). Validation of an inventory of best practices in the provision of augmentative and alternative communication services to students with severe disabilities in general education classrooms. American Journal of Speech-Language Pathology, 18, 329-342.
Kent-Walsh, J., Binger, C., & Hisham, Z. (2010). Effects of parent instruction on the symbolic communication of children using augmentative and alternative communication. American Journal of Speech-Language Pathology, 19, 97-107.v
Naraian, S. (2010). Disentangling the social threads within a communicative environment: a cacophonous tale of alternative and augmentative communication (AAC). European Journal of Special Needs Education, 25(3), 253-267.
Soto, G., & Liboiron, N. (2006). Shared storybook reading with a student who uses alternative and augmentative communication: A description of scaffolding practices. Child Language Teaching and Therapy, 22(1), 69-95.
This paper will review some of the literature concerned with multicultural issues in augmentative and alternative communication to investigate their impact upon same, as well as the extent to which multiculturalism is (or is not) interwoven with the use of AAC. For this purpose, the term "augmentative and alternative communication" (AAC) will be defined as "the use of manual signs, communication boards/books, high-tech electronic devices, and other forms of unaided and aided communication" (Binger & Light, p. 200). More specifically, "[a]ugmentative often refers to the supplementation of, or addition to, natural speech and/or handwriting to enhance communication.... [and a]lternative refers to the substitution of another form of communication for natural speech and/or handwriting" (Liboiron & Soto, p. 71). Persons with disabilities will refer to underage people, only, for the purposes of this paper, as the issues involving adults can be somewhat different and focusing the research in this fashion made sense, given the available literature. Finally, the term "multicultural" as used in this paper will transcend its typical "race-only" connotations and refer to the acceptance and celebration of true diversity in all its meanings, from sexual orientation to class and including, of course, race, religion, and ethnicity.Review of the Literature
Who are the students with disabilities who utilize augmentative and alternative communication technologies? Binger and Light investigated the demographics of preschoolers in Pennsylvania who were receiving special education services, and discovered that a full 12% were in need of one or another form of AAC. This finding is significant in itself, as this represents a large percentage of the population. However, just as significant is the finding that these students come from a wide range of cultural backgrounds, showing a similar distribution to that of the "general" student population; this is important because "researchers have stressed the importance of addressing the specialized communication needs of children from diverse backgrounds who need AAC (e.g., Soto, 2000)" (Binger & Light, p. 201). Such information is also important to collect because it informs future research into the cultural diversity of students with disabilities who are in need of AAC. Specifically, the researchers found that out of 1,009 speech and language pathologists who returned the survey, 84% of students were of European-American descent; 3% were of Latin-American descent; 10% were African-American, 2% were Asian-American, and less than 1% were of Native American descent. They also found that 71% of the students were male, supporting previous research indicating that males exhibit a higher prevalence of disabilities which call for the use of AAC.
Because this distribution (other than that of sex) essentially parallels that of the United States as a whole, it is critical for helping professionals to be educated about the various issues inherent in working with students and their families who come from a wide variety of cultural backgrounds. Indeed, in their review of best practices in the provision of AAC services to students with severe disabilities, Calculator and Black include the need for AAC-related services to be consistent (compatible) with the cultural values of both the student as well as the student's family (p. 336). This is critical because there needs to be a flow in terms of use of the AAC between the school and home environments, and if parents and other familial support persons are not "on board" with the program, but instead revert back to more "natural" means of communication at home, the student may not learn to use the AAC as effectively as possible. The idea is for the student to generalize the use of AAC, and because culture is a large part of who we are (both students as well as other family members), then it must be integrated into the AAC plan.
Naraian echoes this assertion, specifically because communication - literacy - in general is intimately connected to cultural values; that is, how we communicate is rooted, in large part, in who we are as a member of one or more specific cultures. Thus, the use of AAC must be a "socially and culturally situated practice" having as a goal the "'generalized ability to use signs/symbols for intrapersonal and interpersonal purposes within specific cultural practices'" (van Oers, p. 303, as cited in Naraian, p. 255). Naraian makes another point related to multiculturalism as well, which is that the very use of AAC itself can serve to alter culturally-situated narratives of disability, particularly of severe disability; when, for example, other students can see that their peers who otherwise have no means of communication are increasingly able to participate in classroom activities via AAC, they have a chance to shift their own idea of the "culture of disability" from one of veritable invisibility and silence to one of connection and ability. In other words, the cultural mores of disability are transformed when people realize that severe disabilities do not necessarily render people incapable of thought, communication, and engagement with the world around them. Thus, at root, the use of AAC in itself is a culturally-situated activity.
However, it is possibly more important to uncover just how, specifically, cultural differences might impact in a practical fashion upon the use of AAC. To investigate some of those practical issues, Kent-Walsh, Binger, and Hisham compared three European-American and three African-American parents of students participating in a training program designed to help them better use a particular AAC in the context of story-book reading. Whether or not a child has disabilities, the use of story books to enhance and cultivate communication skills is critical in the early years. Unfortunately, however, while parents of children without disabilities read to their children tend to ask questions about the books being read, thus encouraging their children to expand their understanding of narrative and other communication mores via the use of open-ended questions (for example), parents of children with disabilities tend to take the lead, ask yes/no questions, and otherwise discourage them from engagement with the text (Kent-Walsh, Binger, & Hisham). This is unfortunate in itself, but particularly troublesome given that for children who need AAC, the potential inherent in story-book reading can be even more instrumental in encouraging communicative growth, for several reasons. First, the vocabulary in such stories tends to be predictable, thus enabling it to be programmed into speech-generating devices (p. 98). Second, while engrossed in the story, children need not pay attention to anything beyond developing communicative skills (as opposed to, for example, motor skills), thus enhancing and deepening their focus on language (p. 98). Third, the AAC device itself can be used to combine vocabulary words into concepts, thus taking a child's communication skills to the next level.
Kent-Walsh, Binger, and Hisham did not modify their study to accommodate the different cultural styles inherent in story-book reading between the two groups studied because they wanted to discover any existing differences. What they found is interesting. Both sets of parents (African-American and European-American) began the program with zero use of "communication partner interaction strateg[ies]" (p. 102), they all ended the program with high levels of use (between 90% and 100%). In all other aspects of the training and practice stages of the program, the parents were similar as well. The only culturally-relevant difference was that the African-American parents voiced appreciation at the inclusion of a particular book which they felt resonated with them more than, say, "Dick and Jane" might have done.
Given that the inclusion of books written from a wide variety of cultural perspectives is now commonly understood to be important to make literacy appealing to a wide variety of students, this makes complete sense. In the specific context of AAC, others have noted the culturally-relevant potential inherent in storybook reading, noting that "allows for 'cultural variation in both the goals of development and the means by which children achieve a shared understanding with those who serve as their guides and companions'" (Rogoff, 1990, p. 8, as cited in Soto and Liboiron, 2006, p. 70). However, the relative lack of widespread significant differences between the two groups of parents speaks to another often-ignored aspect of multicultural awareness, which is that while some aspects of communication are culturally-dependent, others are not necessarily so; it is critical to move beyond identity politics in our perceptions of people from various cultural backgrounds to ensure that while we do not attempt a reversion to "color-blindness" (a.k.a. treating everyone as white), we likewise do not place such monumental importance upon culture so as to miss critical commonalities.
There do exist some cultural differences that impact upon the use of AAC, however. Bailey et al (2006) included socio-economic status (SES) in their investigation of family members' perceptions of AAC. Nicki and Laverne, whose highest degrees of education are grammar school and high school, respectively, tend to leave decisions about particular treatments to the experts, while Penny and Sandy, in possession of bachelor's degrees, take more control over their children's treatment options and don't always consult their teams. The sense of empowerment necessary to interact as Penny and Sandy do is often associated with higher levels of education which, in turn, are often associated with higher levels of SES. Finally, Binger et al studied Latino parents to see whether a specific AAC-related instructional program would be as resonant for them as it is with European-American parents. The researchers found that while AACs are not "really within anyone's culture" (p. 236), there were definitely some cultural-specific differences among the Latino parents. First was a decreased tendency to use the AACs at home as compared with other parents (p. 326). Second was the issue of eye contact; specifically, eye contact tends to be correlated with discipline for some Latinos, and so a tendency to avoid eye contact was more pronounced (and contrary to the most effective use of the program) (p. 236). Third, many Latino cultures tend to be more oral than written in terms of story-telling to children, and that in itself can be a barrier to effective implementation of the AAC (p. 236). Having said these things, all parents reported satisfaction with the program as it was, and all students showed progress.
Synthesis of the Literature and Conclusions
Perhaps the most interesting information to come from this review is that multiculturalism, per se, does not appear to be as relevant a consideration among students who use AAC as it is among caregivers of students who use AAC, particularly parents. This is an important finding especially one of the effects was a variation in degree of the use of AACs at home, and such use is critical to ensure a consistent flow of practice on the part of the student to maximize the treatment outcomes. However, another effect - that of ensuring that texts are culturally appropriate - is more relevant for school-based professionals, as it can be safely assumed that parents will choose culturally-relevant books on their own. Thus, more research is critical to determine whether or not caregivers in the school setting are cognizant of students' cultural backgrounds so as to ensure cultural relevance; partly to honor the students' diversity, and partly as a way to keep parents on board with the treatment plan to ensure consistency between environments.
It is also the case that socio-economic class - an often-forgotten aspect of multiculturalism - plays an active role in determining levels of parental participation in ACC-related treatment plans. It is important for all parents to feel empowered to make suggestions about, and engage in, the use of AACs along with their children, from all class backgrounds. Class, as Binger et al. noted in discussing the limitations of their study, might well have had an impact on its results; all of the parents who did well with the AAC program were "highly acculturated" (p. 335) and thus not necessarily from a low SES background. Class may well also play a role in how strongly parents advocate for their children to receive the best possible care vis-a-vis AACs; how well they know how to navigate the system; whether or not they can make meetings at school (given often conflicting work schedules as well as a relative inability to take time off work); and in other areas as well, all similar to the kinds of class-related issues that affect education in general.
On balance, the most striking finding is a relative dearth of findings - relative, that is, to those associated with multiculturalism and general education. It is very likely that a focus on the disability of the individual has trumped other multicultural issues in research studies, and this makes sense to a degree; but it is incumbent upon augmentative and alternative communications researchers to more fully investigate the issue of multiculturalism in the context of both users of AAC as well as caregivers of same. Here, as well, the definition of caregiver needs to be expanded to include all caregivers, including educators and speech-language pathologists, as it may be argued that their interactions affect users of AAC as much as those of parents. Finally, far more research into how multicultural issues affect users of AAC must be undertaken to have a full understanding of them. For such research, highly competent adult users of AAC should be the primary participants, as they would be better positioned to give meaningful and informative feedback. Perhaps then we will have a much richer understanding of the issue of multiculturalism in augmentative and alternative communication. For now, we must simply assume that these tantalizing glimpses into this issue indicate more substantive effects, and undertake therapeutic AAC-related interventions with the same kind of cultural sensitivity accorded to other educational and healing pursuits.
References
Bailey, R.L., Parette, H.P., Stoner, J.B., Angell, M.E., & Carroll, K. (2006). Family members' perceptions of augmentative and alternative communication device use. Language, Speech, and Hearing Services in Schools, 37, 50-60.
Binger, C., Kent-Walsh, J., Berens, J., Del Campo, S., & Rivera, D. (2008). Teaching Latino parents to support the multi-symbol message productions of their children who require AAC. Augmentative and Alternative Communication, 24(4), 323-338.
Binger, C., & Light, J. (2006). Demographics of preschoolers who require AAC. Language, Speech, and Hearing Services in Schools, 37, 200-208.
Calculator, S.N., & Black, T. (2009). Validation of an inventory of best practices in the provision of augmentative and alternative communication services to students with severe disabilities in general education classrooms. American Journal of Speech-Language Pathology, 18, 329-342.
Kent-Walsh, J., Binger, C., & Hisham, Z. (2010). Effects of parent instruction on the symbolic communication of children using augmentative and alternative communication. American Journal of Speech-Language Pathology, 19, 97-107.v
Naraian, S. (2010). Disentangling the social threads within a communicative environment: a cacophonous tale of alternative and augmentative communication (AAC). European Journal of Special Needs Education, 25(3), 253-267.
Soto, G., & Liboiron, N. (2006). Shared storybook reading with a student who uses alternative and augmentative communication: A description of scaffolding practices. Child Language Teaching and Therapy, 22(1), 69-95.