The human right to communicate and our need to listen: Learning from people with a history of childhood communication disorder

Abstract

Purpose: In 2013, the Australian Government Senate formed a committee for inquiry and report into the prevalence of speech, language, and communication disorders and speech pathology services in Australia. Submissions were sought from individuals and organisations. In this paper, submissions made by individuals with a history of childhood communication disorder were examined to explore their life experiences and the impact on their lives when the right to communicate could not be enacted.

Method: There were 305 submissions to the Australian Government Senate Committee Inquiry, of which 288 were publically accessible. In this study, the submissions (n = 17) from children or adults with a history of communication disorder (including speech, language and stuttering), who provided personal accounts of their experiences, were analysed using an interpretative phenomenological approach.

Result: Four themes emerged relating to: personal identity, life with communication disorder, the importance of help, and how life would be different without a communication disorder.

Conclusions: This paper gives voice to children and adults with communication disorder. In listening to these voices, the impact of communication disorder on the right to communicate and on other human rights can be heard, and the need for a response is clear. However, the challenge is to determine how the voices of these individuals, and others like them, can be enabled to exert real influence on practice and policy so communication disorder will no longer be a barrier to attainment of their human rights.

Keywords::

• Article 19
• Universal Declaration of Human Rights
• United Nations
• communication disorder
• speech impairment
• speech sound disorder
• language impairment
• developmental language disorder
• fluency disorder
• speech-language pathology
• qualitative research
• children

Acknowledgement

The documents analysed for this manuscript were sourced from the Australian Senate Community Affairs References Committee inquiry into the prevalence of speech, language and communication disorders and speech-language pathology services in Australia. All submissions analysed were publically available on the Australian Senate website. The authors would like to acknowledge the community members who contributed submissions and thank them for sharing their stories.

Declaration of interest

No potential conflict of interest was reported by the authors.

Notes

1. Note: Participants have been referred to as “Individuals” throughout the paper as they were not participants in a research study, rather individuals sharing their stories. In the Results section, excerpts from the submissions (S) are referenced with numeric codes taken from the numbers assigned to the original submissions. When more than one account was included in a single submission, the first initial of the author has been added (e.g. S99A referred to one child’s account in submission 99; S99K refers to another child’s account within submission 99).