By Patti Murphy
An unspoken message accentuated separate conversations I had with three speech-language pathologists (SLPs) this summer: There is universal good in cultural awareness when helping others to find a voice through AAC—augmentative and alternative communication.
Not to be confused with political correctness, which has to do with avoiding forms of expression that may be perceived as offensive to or exclusive of a particular group of people, cultural awareness is simply acknowledging, accepting and appreciating cultural differences among us. Clinicians consider it an ethical responsibility, given ongoing demographic shifts throughout the United States and the resulting diversity of our population.
Every student, like every clinician, has a culture. Training in cultural awareness is prevalent. Its practice in AAC interventions, as in most therapies, raises the level of comfort and mutual respect, and the odds of success, for all involved. AAC is an umbrella term for strategies and technologies used to supplement—or instead of—human speech. Frequently associated with electronic speech-generating devices with Internet and other digital media capabilities, AAC has many forms ranging from manual communication displays (with text and images) to photo albums, eye contact and gestures.
My SLP friends are AAC practitioners in distinct geographic areas. Very different cultural considerations emerge as AAC becomes a way of life for their clients. In the collective professional experiences they shared for this article, the importance of language, tradition, community and family across cultures—regardless of how one expresses it—resounds. Here are some highlights.
Deb Bierly, M.A., CCC-SLP, Staff Development/TaC Team
Early Childhood and Special Education Services, Lancaster-Lebanon Intermediate Unit 13 (Lancaster, PA)
In Pennsylvania Dutch country, English and Plain (Amish) folks cross paths every day—on roads, in stores and in schools. The Amish community, rural but readily accessible to the nation’s northeast corridor’s urban hubs, has its own schools that children attend through eighth grade. Yet it is not unusual for parents to enroll a child with disabilities in the public school system where they can receive special education services until age 21. They’ve embraced the idea that technology, including AAC devices, can help children reach their potential despite the longstanding perception that modern conveniences are taboo in their culture. “I don’t have to think, “‘This child is Amish. I have to go about this differently,’” Bierly said. “In this era and in this county, I can be almost certain that the families will accept an electronic device for their child if the team recommends it.” Bishops and elders of the community must approve device acquisition. The process may be informal. Bierly said it varies among communities.
It is a given that the device will be used almost exclusively for communication, learning and literacy development. Internet access for email, e-books and some video games may be allowed, but Internet access and most music (some devices have onboard M3 players) are prohibited for religious reasons. In some Amish families, photographs may be off-limits for device content because they’re considered graven images, counter to the cultural practice of humility and in violation of Biblical teachings. Again, it varies across communities. Some content may be spelled in Pennsylvania Dutch, the first language of many Amish folks. Device manufacturers have made special chargers for generators in barns when electricity is barred in homes, Bierly said.
Bierly once had a female student required to forego device use upon high school graduation because tradition prohibited adult women from using the technology. “My heart broke for her. It was a long time ago and a unique situation, one that I have never encountered in any other instance.”
The family, often large and tightknit, is the center of Amish life. Older siblings are the younger ones’ first teachers. Playing games and reading books together are primary ways of learning and keeping entertained.
Two brothers Bierly worked with have complex communication needs stemming from a rare genetic condition. They use AAC devices. One boy is ambulatory and selects vocabulary on his device by hand. The other uses a wheelchair and learned to work his device through eye gaze techniques because his dexterity is problematic. Early on, the rest of the family could tell by the boys’ glances, gestures and occasional vocalizations that they were smart. The boys regularly used the devices at school. Communication became more fulfilling as they later assimilated the technology into their home and community life, using it to read e-books, write stories and prepare flyers for the family’s farm market They’ve enjoyed mentoring peers who also use devices.
The brothers addressed the Intermediate Unit 13 school board. Bierly called it “one of the most moving experiences” of her career. “Their father spoke, too. He said, “‘I have had more conversations with my sons in the last year than in the rest of their lives put together. There wasn’t a dry eye in the house.’”
Julie Bisbee, CCC-SLP, SLangtech (Private speech-language technology practice), Aztec, New Mexico
In Navajo Nation (Dinetah), socioeconomic realities set priorities. The quiet, rustic beauty in its remote setting belies the prevalence of what Bisbee describes as “beyond substandard” living conditions. One family she knows ran their TV and pumped water from the same source, a battery hooked up to the back of a truck. The presence of disability alters the picture unimaginably.
“Personal care is doable but phenomenally demanding,” Bisbee said. There are serious transportation barriers. Public schools tend to be less progressive technologically. Securing services and supports for children with disabilities is a spotty pursuit. Getting a wheelchair, for instance, is rarely a problem. Implementing a sophisticated AAC system is trickier.
More basic than the challenge of technology access in this culture is the absence of literacy. Bisbee has worked with adults who attended school before passage of the Individuals with Disabilities Education Act in the mid-1970s and never learned to read or operate a computer. Averse to a device that helps them speak, they’ll stick to limited speech or unaided forms of AAC such as signing and body language for communication. Parents may be more accepting of a device for a child. In the midst of their complex lives, it is often a partial acceptance. “(They say to) go ahead with it at school but ultimately reject it because it’s one more thing to deal with,” Bisbee said, adding that device abandonment is perhaps too common.
Conversely, she has seen families rally around AAC solutions for loved ones. “When I have broached the subject of using a high-tech communication device, the option of using native language is a big selling point.” So is using the digitized (recorded) speech capabilities available on many devices, which are used often, particularly when the person using the device lives with elders. In the Navajo language, there are separate greetings for elders, other relatives, friends your own age and strangers.
“There have been times when I put my hands up and say, ‘I’m a white woman and say ‘hello’ to everyone,’” Bisbee says. But together, she and her clients do what they need to. Some have specific vocabulary for communicating with a younger person or an older person programmed on their devices.
Bisbee shared the poignant story of teenage girl whose Navajo family obviously wanted her to be literate and technologically competent. The girl liked to say she always wished she could run but doesn’t mind that she needs a device to talk because it forces her to think in advance about what she says.
While the culture may be less conducive to AAC success than she saw while working in larger cities, Bisbee hopes to see barriers tumble. “I consider it a privilege to work within the (Navajo) community,” she said. “I have learned about the values and beliefs, and make an effort to honor those in clinical practice.” One of her goals is to form a group where individuals using devices can practice communication skills and device programming skills together. It would, perhaps, plant seeds for broader social change.
“Communication is universal,” Bisbee said. “Every family wants their children to be able to speak, to participate in the community, to be all they can be.”
Robyn Landau, M.S., CCC-SLP, The Shield Institute – (The Shield Institute in Bayside, Queens is a day habilitation program for adults with developmental and intellectual disabilities who live in the New York City metropolitan area.)
Reminders abound for Landau and her colleagues that New York City is a cultural melting pot. Many of their clients are immigrants or first-generation Americans. “We have a lot of languages covered,” Landau said. Ethnicity ranks with age, gender and ability as a key consideration if someone is to benefit from AAC technology. “If they are from a specific nationality, I would find someone’s voice to record for the device that most closely would resemble their own,” Landau said. Finding a decent match is not so hard. It may be a relative or Shield staff member. The extra time usually spent programming and organizing bilingual content is worthwhile. An intern with Cantonese as a first language did the recording and programmed the device for a client who needed that Chinese dialect to communicate with family members and some friends.
Preferences in food, music, hobbies and interests do not always reflect a person’s ethnicity, as SLPs at The Shield see upon reading vocabulary questionnaires candidates for AAC intervention complete. Like individual backgrounds and personalities, responses are diverse, ranging from requests for five words to ten pages of desired vocabulary to be placed on a device, Landau said.
While at the Shield, bilingual clients usually speak English with friends and staff. Language reminiscent of their roots and belonging to something larger than themselves is important for all. Holidays, tradition and religious practices are popular conversation topics. Families want adult children to be able to discuss them independently. The woman who speaks Cantonese, for instance, uses her device to explain the symbolic meaning of a dragon at Chinese New Year celebrations.
Few, if any, cultural boundaries exist when it comes to current events. After 9/11, the Northeast Blackout of 2003 and the more recent Boston Marathon bombings, people wanted to talk, Landau said. Tweaking device content took priority so clients could clearly express what was on their minds—relief that friends and relatives were OK, anger, fear, sadness or thoughts on preparing for emergencies.
Resistance to AAC technology generally is not a byproduct of culture, but tends to happen universally, Landau said. Believing that established (often low-tech or unaided) methods of communication work well enough, they may miss the bigger picture that a device can help their loved one communicate better in many situations. And, most important, in their own words.
Our Featured Guest Blog/Author: Patti Murphy
Patti Murphy writes for DynaVox Mayer-Johnson, which provides complete training and technical support services for AAC, helping educators, speech-language pathologists, and parents help students integrate the technology into their day and find a lasting voice. She can be reached at [email protected]. The website is http://www.dynavoxtech.com