Miles Forma really doesn’t like when people think he is stupid because he’s unable to talk.
“I’ve had many experiences in my life where people assumed because I am a non-speaking person and sit in a wheelchair, I’m not intelligent,” Forma said recently using augmentative and alternative communication (AAC).
The young man wasn’t saying this to just anybody. His audience included people with the power to change things—attendees at a major conference on disability at United Nations (UN) headquarters in New York a few weeks ago.
Forma was a presenter at a session—or “side event” in UN parlance—hosted by the International Communication Project (ICP), an initiative ASHA helped found.
This ICP event—People With Communication Disabilities Speak Up For Inclusion and Participation—was co-sponsored by the government of Australia and organized by two other ICP founders, Speech Pathology Australia (SPA) and the Royal College of Speech & Language Therapists, with help from ASHA.
Gail Mulcair, chief executive officer of SPA, presented alongside Forma, and Derek Munn, director of public policy and public affairs at the Royal College, moderated. Forma wasn’t the only AAC user who had his say at the ICP event. Meredith Allan, president of the International Society for Augmentative and Alternative Communication, also presented.
“Probably the most important issue in the use of AAC is getting communication access recognized as an access need, similar to how a wheelchair symbol is used internationally to indicate a mobility need or a white cane is used to indicate a visibility need,” Allan said. “Communication is a basic human need as well as a human right.” She closed by sharing her dream that “all can go out into the world accessing all areas, including communication.”
The use of the words “speak up” in the event title was no accident. Communication disorders received little attention in the 12 previous annual meetings of the UN’s Conference of State Parties (COSP) on the Convention on the Rights of Persons With Disabilities.
“When we went to COSP last year as observers, our chief impression was that communication disability needed a much higher profile,” Arlene A. Pietranton, ASHA chief executive officer, says.
What a difference a year made. Not only did the ICP event take place, but Pietranton also presented at two other sessions—one hosted by American University’s Institute on Disability and Public Policy and co-sponsored by ASHA. At this session, Pietranton spotlighted the need for more information and disaggregated data about resources available to students with communication disorders in higher education. She also presented at an event sponsored by Dementia Alliance International, and highlighted the importance of mitigating communication disabilities associated with dementia.
Topics for the three presentations varied, but they had some key similarities. All included calls for recognizing communication as a human right, urging greater attention for communication disorders and how they affect people’s lives, amd emphasizing the need for resources to empower people with communication disorders to achieve full societal inclusion.
According to Pietranton, plans to build on the achievements at COSP 2019 hold great promise.
“To go within a year’s time from zero events on communication disability to three at an important UN disability conference is truly exciting,” she says. “Among other things, it reflects effective collaboration with our colleagues in other countries. We look forward to continuing to work together with them to build upon the foundation that has been laid this year.”
You can listen to recordings of the ICP event, plus all of the presentation referenced in this post.
Joseph Cerquone, CAE, is ASHA director of public relations. email@example.com.