With members of the global disability community lending their voices, the International Communication Project (ICP) hosted a breakthrough event at the headquarters of the United Nations (UN) this past June.
The setting was the most recent Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (COSP), an annual gathering of disability officials, advocates, and experts from around the world.
Although COSP had met for more than a decade, communication disability—and its impact—had not been fully recognised. That changed this year, however, when the ICP hosted “People With Communication Disabilities Speak Up For Inclusion and Participation,” one of the Conference “side events” that was bolstered by speaking opportunities elsewhere at COSP that organisations involved with the ICP used to advocate.
Co-sponsored by the government of Australia, the ICP event was organised by two ICP founders, Speech Pathology Australia (SPA) and the Royal College of Speech & Language Therapists (RCSLT), with help from a third founder, the American Speech-Language-Hearing Association (ASHA).
Following opening remarks of welcome by moderator Derek Munn, RCSLT Director of Policy and Public Affairs, first presenter Gail Mulcair, Chief Executive Officer of SPA, called for “more explicit recognition of communication disability within legislation, acts, and policies, including specific strategies in how to achieve the UN’s Sustainable Development Goals and the UN Convention on the Rights of Persons with Disabilities (CRPD).”
Mulcair added: “The lack of public policy around communication disability is not helped by the fact that there is limited data on the scale and scope of communication disability prevalence.”
Another presenter, Professor Sharynne McLeod, Charles Sturt University, Australia, made a strong case for recognising the ability to communicate as a human right. “Communication is a human right for everyone, including those with communication disability,” Professor McLeod noted as she cited specific parts of the Universal Declaration of Human Rights (Article 19) and the CRPD (Articles 2 and 21) to support her claim.
Such points were resoundingly seconded by members of the disability community like Meredith Allan, President of the International Society for Augmentative and Alternative Communication. An augmentative and alternative (AAC) device user herself, Allan contended that a leading issue surrounding AAC device use is “getting communication access recognised 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.” She closed her remarks sharing her dream that “all can go out into the world accessing all areas, including communication.”
Recounting his own childhood struggles, another AAC user, Miles Forma, a disability advocate from the New York City area, addressed the impact of being unable to communicate.
“When capable children are left with no way to communicate, they will feel alone and depressed,” Forma told ICP event attendees. “Because without a way to communicate, they are being isolated.”
Forma ended his presentation with a plea. “The International Communication Project is urging policymakers to recognise not only that communication is a basic human right, but also the impact that communication disabilities have on people’s lives and the importance of providing resources that empower them to live their lives to the fullest.
“I couldn’t agree more,” Forma said. “That is a message that must be heard.”
In fact, individuals from organisations involved with the ICP worked the duration of the Conference to ensure the hearing Forma felt was so badly needed. Mulcair and SPA Vice President Belinda Hill made communication disability the focus of their speaking opportunities before the COSP General Assembly and Civil Society Forum. Meanwhile, ASHA Chief Staff Officer Arlene A. Pietranton presented at two other COSP side events: at one, she spotlighted the need for more information and disaggregated data about resources available to students with communication disability in higher education; and at the other Pietranton highlighted the importance of mitigating communication disability associated with dementia.
Subsequently, the success at the UN was raised in presentations ICP representatives made in August in Taipei, Taiwan at the 31st World Congress of the International Association of Logopedics and Phoniatrics, an ICP participating organisation.
Meanwhile, longer term, a promising advocacy path for communication disability is foreseen. On the SPA website, Mulcair indicated the experience at COSP opened a door “to empower greater participation of people with communication disability to have their ’voice’ at the highest level of human rights.” Pietranton noted on ASHA Leader Live the effective collaborative approach ICP founders took holding the UN side event. “We look forward to continuing to work together with them to build upon the foundation that has been laid this year.”
Joseph Cerquone is Director of Public Relations, American Speech-Language-Hearing Association, and a member of the ICP Communications Work Group.