Doctor W is a Medical Doctor in Internal Medicine with a large practice in Austin, Texas. At the current time she two has patients who rely on augmentative and alternative communication (AAC). She thinks AAC devices are very useful she is thankful that they have the device so can speak their own mind. Those devices allow her patients to speak for themselves and express what they want to say which enables her to find out what problems they are having.
The main challenge Dr. W has is the time she is allotted to see each patient being so short. Because it takes additional time for the patient who has a device to communicate what they need to say sometimes she feels rushed and may not get all of the information. She went on to say “These patients also tend to be more complicated with more medical problems. That is a challenge that I enjoy handling but can often take more time to deal with. “
She does not think there is a lot a patient can do differently because it takes patience on her part to wait for the patient to finish their message. Dr. W truly believes it is better than to solely rely on a caregiver’s observation. However, sometimes the caregiver can provide information that the patient cannot and this is true for many patients. She does like to get information from the patient when at all possible and having some questions or statements prepared ahead of time could help the process. That way additional questions can probe the problem further.
Dr. W also added when the patient is new, they may make it easier for her to understand their medical issues if they have a brief narrative prepared. This way she could read it and quickly become acquainted with the patient’s history. She have a lot of patients that do this who do not have any language issues. These documents often have medical history, dates of procedures, other physicians they see and emergency contacts.
Stephanie Faso has a Bachelor of Arts in Communication Studies at San Jose State University and currently she is working on her Master’s also in Communications. She has been using Unity 128/144 Sequenced since 2000 and her current communication device is the Accent 1400. Stephanie said “Basically, I am just like any other Millennial who is earning their Master’s Degree, but I communicate through a speech-generating device, use a manual wheelchair, and need complete support with my personal care and health needs”. She said that because she communicates nearly every day with professionals, whether it is her advisors or professors from her Master’s Program or in social situations with store employees and restaurant staff.
She has presented throughout the San Francisco Bay Area since 2011 and during that time Stephanie has developed five versions of her presentations with differing lengths to fit different time length requirements and requests. All of her presentations are pre-stored in her communication device’s notebooks. Afterward, she answers the audiences’ spontaneous questions. Usually, her answers are in-depth and composed on the fly.
Stephanie feels very strongly about speaking for herself instead of having somebody communicating on her behalf as she feels it can become a form of co-dependency and cause an imbalance in the power. She wants to be treated like her peers without significant speech disabilities because she says after all it is her educational, health, and personal needs and not anyone else’s. Therefore, she speaks for herself and she thinks it is inappropriate for someone to speak for her, especially without permission. Stephanie added “Individuals with AAC need to learn how to build boundaries with their caregivers and families on understanding when it is okay for them to speak for themselves and when it is okay to let others to speak with them.” Understanding the difference between speaking for and speaking with also needs to be set in the boundaries.
When an AAC user allows a professional to speak pass them and have others to speak on their behalf Stephanie believes it reinforces the expectations of people with significant speech disabilities are less intelligent and mature. She also turned the tables by saying adult users of AAC often don’t respect themselves as adults and encouraging them to speak for themselves can be a starting point. The strategy she uses for this situation is formulating messages and questions beforehand in a notebook in her communication device. This not only empowers her to speak for herself it also is respectful to the professionals and their time. When there is a misunderstanding with what she was saying, she gives permission to whoever is with her to clarify what she was saying.
More often than not, Stephanie thinks professionals have a significant amount of patience with her communicative differences. She continues by saying everyone is used to how she communicates, so communicating with her is like second nature to them and many people in general think that her communication device is so cool, which is a perk of living in Silicon Valley in the 21st century.
For my very first to post I was excited to interview my very good friend Dr. Jeannie DeFazio who is the Chairperson of the Division of Education at Walsh University in Canton, Ohio. Early in her teaching career she worked with children with speech disabilities when AAC first came on the scene. Currently, she only intermittently interacts with device users through her university teaching. Also, she interacts socially with young adults in a transition program who have exceptionalities and some use AAC.
Before I moved to Texas I used to speak to her special education class at Walsh University just about every year. To prepare her students for my visit she told the students that she thinks the most important barriers to overcome for an AAC user are access and motor planning. Once those are figured out Dr. DeFazio believes the next things to work on are basic understanding of cores vocabulary and language surface structure.
She feels one of the challenges of interacting with an individual who uses AAC is sometimes people do not understand that it may take an individual a little longer to complete a sentence or response. Dr, DeFazio thinks if the individual shares that they use AAC and it may take a few moments for responses in a prestored utterance in their device may help to have a better interaction. In addition, the device user could give a short explanation of their device and their access method could be helpful. Lastly, they can prepare a friendly greeting or a question to help break the ice.
Dr, DeFazio formed a love and respect for the individuals who use AAC because there is so much work that goes into their communication. She realizes sometimes it is easier for a family member or a caregiver to speak for an individual. However, she prefers to directly interact with the individual because she wants to respect them by directly communicating with that person. She also feels people need to be patient with the individual and not automatically turn to the family or caregiver
People who rely on Augmentative and Alternative Communication (AAC) often do not interact well with speaking people especially with people who are professionals. There might be many reasons for this including but not limited to time constraints, knowledge of both parties of AAC, or the lack of interest to interact. Though, there are certain professions that have no choice but to interact with an individual with AAC such as doctors and perhaps teachers whether or not they are comfortable doing so. These situations can be awkward at best. However, the person relying on AAC also needs to be an active participant of the conversation to keep the other party’s interest and attention.
I am going to interview people from different professions or people who rely on AAC every month and write a monthly blog about our interaction. The interviews will take place in person, through Skype, over the phone, or through e-mail. This will benefit the people in the community because it would raise awareness to the fact people who rely on AAC can hold conversations effectively. Moreover, it will help professionals to see how to interact with individuals who rely on ACC appropriately. Lastly, the blog will assist the users of AAC to receive pointers and techniques from the blog to improve their communication.