Lived experiences of people with complex communication needs: Romantic and sexual relationships

Author: Darryl Sellwood

Sellwood, Darryl, 2019 Lived experiences of people with complex communication needs: Romantic and sexual relationships, Flinders University, College of Nursing and Health Sciences

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Background: Human beings are social by nature. People with and without disabilities pursue romantic and sexual relationships for wellbeing and to meet their social, emotional, physical and sexual desires and needs. A systematic literature review was conducted investigating the perceived barriers and facilitators experienced by people with congenital physical and communication disabilities in socializing, sharing intimacy and expressing sexuality. It revealed that little was known of such experiences by people with congenital physical and communication disabilities.

People with complex communication needs can use Augmentative and Alternative Communication (AAC) systems and strategies to assist in communicating and expressing themselves. The AAC field supports people with complex communication needs to live their lives to their full potential through clinical practice grounded in evidence-based intervention. Based in large part on the United Nations Convention on the Rights of Persons with Disabilities, the field focuses on building communicative competency, education, living skills, social networks and employment. However, it was evident that the rights embedded in the Convention were not completely addressed because of the absence of information on, and understanding of, the lived experiences of people with complex communication needs in developing romantic and sexual relationships. This lack of evidence makes it challenging to provide adequate services and policies to assist them in forming adult relationships. The aims of this research were to investigate the lived experiences of people with complex communication needs in developing romantic or sexual relationships, and to identify barriers and facilitators they encounter in these pursuits.

Method: This research deliberately sought lived experiences in an area that is seldom discussed openly, employing a critical hermeneutics approach and Feminist Standpoint Theory. Nine participants who had complex communication needs were interviewed regarding their lived experiences in developing romantic and sexual relationships.

Results: All participants were 21 or older, had a physical and communication disability since childhood, and used AAC. The findings revealed that most had enjoyable sex lives. Most participants identified as heterosexual and only two were in ongoing relationships. However, compared to the general population, the participants encountered additional barriers and facilitators. Five significant factors appeared in many of their experiences: attitudes of others, assistance of support workers, communication in intimate moments, sex and disability education, and the attitudes of the participants themselves. Assistance of family, friends, support workers and professionals acted as a facilitator, but ableist attitudes were also prevalent among them, adding to the barriers. Support workers were facilitators for participants to develop relationships, however, employment policies often hindered the provision of assistance with sexual activity. AAC devices supported social interaction, yet they were difficult to use in more intimate situations and their slowness could have prevented people from meeting potential partners. Participants also pointed to the lack of relationship and sex education received in their schooling as a significant barrier. Despite the relentless ableism that the participants encountered, their resilience and determination were their most influential facilitators, and they rarely focused on their disabilities as inhibitors.

Conclusion: The lived experiences of the participants provided a unique insight into their audacity and resilience in developing romantic and sexual relationships. Their experiences bring attention to the need for changes in policies, practice and research to further support people with complex communication needs in their quest to develop intimate relationships.

Keywords: Disability, Sexuality, physical disabilities, complex communication needs, use Augmentative and Alternative Communication, congenital disability, AAC devices, romantic and sexual relationships, qualitative research

Subject: Disability Studies thesis

Thesis type: Doctor of Philosophy
Completed: 2019
School: College of Nursing and Health Sciences
Supervisor: Associate Professor Parimala Raghavendra