The ethics of inclusion in AAC research of participants with complex communication needs

If qualitative researchers in lifelong disability are to produce authentic findings on the experiences, perceptions and expectations of people with disabilities, research methods must include people with disabilities as participants. People with complex communication needs (CCN) are often excluded from participating in generic research, disability research and augmentative and alternative communication (AAC) research because of negative assumptions by researchers, Human Research Ethics Committees [HRECs] and collaborating disability organisations about their cognitive capability and ability to consent to participation. Such attitudes disadvantage people with CCN, perpetuate their social exclusion and are a breach of human rights under the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006). However, there are indications of improvements in ethical approaches to inclusive research that enable people with CCN to execute their right to be involved in research and have their voices heard.