‘We need to share our stories’: the lives of Pakistanis with intellectual disability and their guardians

Abstract

IntroductionThe experiences of Pakistanis with intellectual disabilities (IDs) and their family members have been underexplored empirically. Method The present study sought to address this gap by understanding the lives of five Special Olympics Pakistan athletes and their guardians through PhotoVoice.Findings Through thematic analysis, we present the primary theme concerning Pakistan's cultural context that provides an empirical exploration of cultural beliefs about intellectual disability, cultural expectations and support received by people with intellectual disabilities and their guardians. Discussion We discuss implications for research and practice.

A systematic review of photovoice research methods with people with intellectual disabilities

“…Some researchers could rely on participants' existing ownership of and familiarity with smart phone cameras (Kim et al, 2021; Patka et al, 2020; Wass & Safari, 2020) which they used for the photovoice project. However, Watchman et al (2020) advocated for handing out a straightforward point‐and‐shoot digital camera as a more accessible and easy to use option, especially as smartphone ownership is far from universal among people with intellectual disabilities (Johansson et al, 2021) particularly among older people (Anrijs et al, 2022).…”

“…John et al, 2021;van Heumen & Schippers, 2016) or someone from the participants' work (Akkerman et al, 2014), family or social network (Schleien et al, 2013;Tajuria et al, 2017;Williamson et al, 2020). In Heffron et al, 2018 In two studies (Patka et al, 2020;Williamson et al, 2020) group discussions involved not only participants with intellectual disabilities, but also family members and carers/guardians. This facilitated access to wider discourses around culture, religion and disability, but ran the risk of subsuming the perspectives of the participants with intellectual disabilities (Patka et al, 2020).…”

“…In Heffron et al, 2018 In two studies (Patka et al, 2020;Williamson et al, 2020) group discussions involved not only participants with intellectual disabilities, but also family members and carers/guardians. This facilitated access to wider discourses around culture, religion and disability, but ran the risk of subsuming the perspectives of the participants with intellectual disabilities (Patka et al, 2020).…”

“…On the other hand, there were many examples of engaging photovoice participants in 'member checking', opportunities to verify and validate themes proposed by the academic researchers with participants (Garrels & Sigstad, 2019;Jurkowski & Paul-Ward, 2007;Overmars-Marx et al, 2018;Patka et al, 2020;van Heumen & Schippers, 2016;Watchman et al, 2020) or other stakeholders (Weiss et al, 2017).…”

“Everyone has a story to tell”: A review of life stories in learning disability research and practice

“…Since that time, many life stories have appeared in print (Barron, 1996; Burnside, 1991; Cooper, 1997, 2008; Patka et al, 2020), conference presentations (Docherty, 2009; Kearney, 2009), online archives (for example, Unlocking the Past: the Royal Albert project; the Lennox Castle Hospital project) and websites Mencap Here I Am Campaign, 2016. Mabel Cooper's life story (Cooper, 1997, 2008) inspired a museum exhibition, learning disability history workshops and immersive theatre productions (Ledger et al, 2020).…”