Time for tough conversations: Ableism in the life journey of young adults with visual impairment

Abstract

Background: Visual impairment (VI) profoundly impacts many aspects of life and is well documented in various cross-sectional studies. Young people’s views on growing up with VI are largely unexplored in the Indian context. Aim: This study explores a critical concept called “ableism” as they navigate through childhood and adolescence. Materials and Methods: The study used an exploratory research design, with QUAL+ QUAN methodology, where the data collection occurred almost simultaneously, and the qualitative was the dominant method. For the quantitative data collection , seventy youth with visual impairment aged 18-25 years were recruited through convenient and snowball sampling. For the qualitative data collection, 20 were selected based on purposive sampling. Kessler Psychological Distress Scale (K10) was used with 70 participants as part of quantitative data collection. An empirically based interview guide encouraged participants’ reflection on growing up with VI, including the internal and external age-normative and vision-specific challenges. The interviews were analyzed using thematic analysis. Results: Thirty percent of the participants reported psychological distress at varying levels from mild to severe. The account of growing up with VI also centered on a theme labeled “ableism.” Six subthemes representing “ableism” are 1) invasion or avoidance, 2) you achieve, and I will respect, 3) disgraceful experiences, 4) you are our inspirational meme, 5) double vulnerability, and 6) internalized ableism. Each subtheme discusses different forms of ableism experienced by young people with VI. Conclusion: Findings are discussed in relation to the limiting attitude and structure of the society that affects the lives of young people with VI. They highlight the need to understand the nuances of ableism which helps to revisit and reflect as a society.