I read a fascinating story in Holland Bloorview scientist Barbara Gibson’s new book that looks at how cultural notions of what’s "normal" influence what we value in rehab.
The book is called Rehabilitation: A Post-Critical Approach.
The story was about a high school student whose most efficient way of communicating was to speak in a way that wasn’t intelligible by others—but which her mother could easily translate. The student was able to use a voice-generating device, but said it was slow, cumbersome and tiring. She only used it at school where no one understood her speech.
Which way of “speaking” is better? Using the voice device would give the student a higher score on a rehab test of “independent communication,” but the student said speaking with the support of her mother is much easier and faster.
I reached out to Barbara and learned that this story was contributed by Gail Teachman, who worked for over 20 years as an occupational therapist at Holland Bloorview. She just completed her PhD in philosophy at the University of Toronto’s Rehabilitation Science Institute. Gail co-wrote one of the chapters in Barbara’s book.
Gail’s doctoral research involved interviewing 13 high school students who used alternative and augmentative communication (AAC) about what inclusion means to them. The term AAC is used broadly, to include voice devices, gestures, pictures, utterances and other ways of expression. Gail encouraged participants to communicate in their preferred modes and in any way they felt most comfortable.
“A lot started off wanting to impress me and show what a 'good' communicator they are using technology,” Gail said. “But once they relaxed into the interview, they more often relied on a family member as a communication partner and I was able to see how they more typically communicate.”
All chose to have a mother or sibling participate so that they could use speech or gestures, which their family member translated, to save energy.
“Even as a seasoned AAC clinician, I understood very little of their speech. This is not speech most people would understand at first. It was like having a door opened to a room that I had never been in because the person felt comfortable and the family understood just about everything the youth said. It was a privilege for me to see that these families have learned to understand their child’s communication in ways that are different but no less valuable. It was so rich and so moving.”
At the same time, Gail said, the teens and young adults noted that they can’t converse this way in public because “it’s devalued there.”
Ironically, many of these youth, who are labelled “non-speaking,” speak all the time at home, Gail said.
“One of the things I looked at in my research was why we put so much emphasis on what we call ‘independent communication.’ We could do so much more in our work to advocate for communicative competency as being a shared concept. That it’s not about changing the way ‘they’ communicate, but to turn it on ourselves and consider how socially we’re stuck in thinking there’s only one way to communicate: that approximating oral speech is the best way. Instead, we might consider our own ability to converse with people who talk in different ways.”
Gail said some great work is being done about communication as a shared concept at Communication Disabilities Access Canada.
Typically, Gail said, people who use different ways of communicating have been excluded from participating in research. “It’s thought that they wouldn’t be able to respond to questions, or that their responses wouldn’t be valid. My research used the work of sociologists and linguists to argue that if a person is communicating—whether it’s with a device or facial expression or dysarthric speech or with a communication partner who understands them—their talk is no less valuable or true.”
Her research also found that using a voice device is devalued in society at large.
“I found that even when a person became quite competent at using a device, it didn’t mean that when they went to the mall they felt included. Participants told me: “People don’t stop, they don’t wait, and they don’t value what I have to say.” The technology itself can be intimidating and discourage interaction, Gail said.
One young man who joined a wheelchair hockey league talked about how no matter how much training the coaches had, they talked to him like he was a little kid. He felt that because he used a voice device, they assumed that he wasn't very smart.
The youth in Gail’s study preferred to go places with a parent or support worker because it “helps them feel safe and able to interact in a world that is constructed for people who use clear oral speech. But that’s termed ‘dependency’ and is too often considered lacking in some way.”
She stressed how much we inadvertently limit youth when we overemphasize the value of independent speech.
“It may take five minutes for someone to make a sentence on a device and that’s exhausting,” Gail said. “Without question, technology can improve the lives of children with communication impairments. But with certain questions they could turn to a communication partner and basically say ‘Can you take this one for me?’—and because of their shared history, the partner can help them get their message across more easily. As long as we hold up independent speech as the best way to communicate, we only allow ourselves to see a part of what that young person wants to share.”
Stay tuned for more on what high school students in Gail’s research said about inclusion.
The book is called Rehabilitation: A Post-Critical Approach.
The story was about a high school student whose most efficient way of communicating was to speak in a way that wasn’t intelligible by others—but which her mother could easily translate. The student was able to use a voice-generating device, but said it was slow, cumbersome and tiring. She only used it at school where no one understood her speech.
Which way of “speaking” is better? Using the voice device would give the student a higher score on a rehab test of “independent communication,” but the student said speaking with the support of her mother is much easier and faster.
I reached out to Barbara and learned that this story was contributed by Gail Teachman, who worked for over 20 years as an occupational therapist at Holland Bloorview. She just completed her PhD in philosophy at the University of Toronto’s Rehabilitation Science Institute. Gail co-wrote one of the chapters in Barbara’s book.
Gail’s doctoral research involved interviewing 13 high school students who used alternative and augmentative communication (AAC) about what inclusion means to them. The term AAC is used broadly, to include voice devices, gestures, pictures, utterances and other ways of expression. Gail encouraged participants to communicate in their preferred modes and in any way they felt most comfortable.
“A lot started off wanting to impress me and show what a 'good' communicator they are using technology,” Gail said. “But once they relaxed into the interview, they more often relied on a family member as a communication partner and I was able to see how they more typically communicate.”
All chose to have a mother or sibling participate so that they could use speech or gestures, which their family member translated, to save energy.
“Even as a seasoned AAC clinician, I understood very little of their speech. This is not speech most people would understand at first. It was like having a door opened to a room that I had never been in because the person felt comfortable and the family understood just about everything the youth said. It was a privilege for me to see that these families have learned to understand their child’s communication in ways that are different but no less valuable. It was so rich and so moving.”
At the same time, Gail said, the teens and young adults noted that they can’t converse this way in public because “it’s devalued there.”
Ironically, many of these youth, who are labelled “non-speaking,” speak all the time at home, Gail said.
“One of the things I looked at in my research was why we put so much emphasis on what we call ‘independent communication.’ We could do so much more in our work to advocate for communicative competency as being a shared concept. That it’s not about changing the way ‘they’ communicate, but to turn it on ourselves and consider how socially we’re stuck in thinking there’s only one way to communicate: that approximating oral speech is the best way. Instead, we might consider our own ability to converse with people who talk in different ways.”
Gail said some great work is being done about communication as a shared concept at Communication Disabilities Access Canada.
Typically, Gail said, people who use different ways of communicating have been excluded from participating in research. “It’s thought that they wouldn’t be able to respond to questions, or that their responses wouldn’t be valid. My research used the work of sociologists and linguists to argue that if a person is communicating—whether it’s with a device or facial expression or dysarthric speech or with a communication partner who understands them—their talk is no less valuable or true.”
Her research also found that using a voice device is devalued in society at large.
“I found that even when a person became quite competent at using a device, it didn’t mean that when they went to the mall they felt included. Participants told me: “People don’t stop, they don’t wait, and they don’t value what I have to say.” The technology itself can be intimidating and discourage interaction, Gail said.
One young man who joined a wheelchair hockey league talked about how no matter how much training the coaches had, they talked to him like he was a little kid. He felt that because he used a voice device, they assumed that he wasn't very smart.
The youth in Gail’s study preferred to go places with a parent or support worker because it “helps them feel safe and able to interact in a world that is constructed for people who use clear oral speech. But that’s termed ‘dependency’ and is too often considered lacking in some way.”
She stressed how much we inadvertently limit youth when we overemphasize the value of independent speech.
“It may take five minutes for someone to make a sentence on a device and that’s exhausting,” Gail said. “Without question, technology can improve the lives of children with communication impairments. But with certain questions they could turn to a communication partner and basically say ‘Can you take this one for me?’—and because of their shared history, the partner can help them get their message across more easily. As long as we hold up independent speech as the best way to communicate, we only allow ourselves to see a part of what that young person wants to share.”
Stay tuned for more on what high school students in Gail’s research said about inclusion.
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6 comments:
I believe that facilitated communication is a great thing when it works for a person. The only problem with it is if there are not many interpreters who can do the facilitating. It's great that Mom, Dad, Sis or other family members or friends can do such a great job but if only one person can do it and something happens to that one person, it leaves the facilitated in a bad place.
I wish centers, universities, some place would have a facilitated person and helper come up with a methodology that would allow someone to be trained in the facilitator's place, and that this is something that keeps getting updated, so some one can step in if something happens. Sadly in life, there is no predicting what can occur, and a back up is needed. Such a center can also verify that the translation is all that is happening, that the communication is indeed being facilitated, because there have been cases where that was not the case, and even more where doubt is cast.
This post brings up so many important issues that
need more attention and awareness.
Thank you for a very thought-provoking post. My son has Down syndrome and apraxia. We went to a communication device at around age 8 and he hated it. He refused to use it which was frustrating for all of us. He signed a little bit but not very much. He now has an iPad and ProLoQuo2Go which he finds much easier to use. But he almost never uses it at home with us because we understand him. When we use it out in the community at stores and restaurants, reactions are mixed. Some people say how cool! Some ignore it and address all their questions to me. Some don't even realize it's his communication and just think he is a bratty kid who can't put their electronics down long enough to help Mom with the shopping. And yet, even his teachers express surprise at how much knowledge he has when he is able to answer them correctly or express a complex thought. Yes, he has intellectual disabilities and trouble speaking but he is not stupid! Our main worry is what happens to him when we are no longer here to translate for him? As Catherine said above, if we only relied on those who understood his speech it would be difficult when we weren't available and I think more frustrating for him later on. So we will keep plugging away and helping him communicate in a way that the majority of the world can understand. I'll perhaps feel less guilty about him not using it so much at home though :-D
Great post! I shared with NeuroDevNet researchers who are looking for best practice in research engagement. This reminds me so much of what happens in our house with Nick. We talk all the time and he is considered non-speaking. Our family and Nick's closest helpers understand him just fine. Nick is reluctant to use his Dynavox with head switches and earphones because it's so slow and work-intensive. He'll use it under duress with unfamiliar communication partners. We are all waiting for the day when technology is developed that can translate thoughts into spoken words.
It is great to engage in these conversations! Agreed - people with communication impairments should be supported to use ALL of their preferred modes of communication - this will include technologies in many situations. To reiterate, AAC devices have much to offer but youth in my research said they did not want people to 'rule out' all of the other ways that they communicate.
An important clarification: The term 'facilitated communication' is a very controversial one that means different things to different people. The International Society for Augmentative and Alternative Communication (ISAAC) is a group that includes many people who use AAC. They define facilitated communication as the type where one person physically prompts another to type a message - usually hand-over-hand. ISAAC has taken a position against facilitated communication. The communication partners (sometimes called communication assistants) described in this blogpost are not using that approach. The biannual ISAAC conference will be held in Toronto this year and brings together people from around the world who use AAC, clinicians, educators, device developers and so on. This is a great resource and networking opportunity for Ontario families see https://www.isaac-online.org/english/conference-2016/ or on Twitter #ISAAC2016
Thanks for this informative post, Louise. In reading through the comments I would say 'ditto' to BethBG's comment. My comment about our son, Carter's situation would mirror exactly what Beth had to say about the situation and the experience she's had with her son. Nonetheless, this is a very thought provoking piece. I can only hope that we will be able to find someone who can act as a reliable communication partner for Carter because, as many have said here already, Mom, Dad and siblings will not always be around to translate.
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