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Updated: Jun 14, 2025

A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis ALS
Published on: February 21, 2011
Speech is exhausting
1#AutChat.
Abstract:
This paper focuses on my meaningful participation in society as a semispeaking AAC user, the importance of self-determination and interdependence, and the critical role of participatory research. Having spent years in speech-centric services as a child, I pushed myself to use mouthwords for decades. But the cost was high. Such "expensive speech" is defined as that which may be effective, but has a significant cost in terms of energy, cognitive resources, or other internal resources, affecting what is available for other or later skills or tasks. Multimodal AAC has decreased my cognitive load, freeing up resources for more meaningful participation in society. Yet many people do not have access to the supports they need to communicate fully. Future research should examine and deconstruct barriers to AAC that are established and maintained by ableism. Every human deserves the opportunity to explore multiple robust AAC options. Too often AAC users' perspectives are disregarded, no matter how tenacious our self-advocacy. The idea that the field of AAC research itself would perpetuate this enforced "voicelessness" is deeply unjust. Our contributions to AAC research - via participatory models that position us as equal partners - can, will, and do make that research more meaningful.
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