The Politics of Person-Making: Ethics of Care, Intellectual Impairment Citizenship, and a Reclaiming of Knowledge

Abstract

Enabling and disabling socio-political thinking and decisions impact on resources for caring about intellectual impairment and can create two things: policy environments in which enabling services will be delivered and spaces that will include or exclude the participation of people with intellectual impairment as active citizens. To achieve citizenship with the rights and obligations this entails, we all require socio-political resources; but how often have we asked people with intellectual impairment what they need in order to live as full members of society? Intellectual impairment citizenship begins with respect for specific requests and needs, effective engagement with individual experiences and opinions, and recognition of a truer knowledge and expertise. Including intellectually impaired individuals as experts in research and policy formulation increases the likelihood that policies will more accurately reflect their social conditions and have greater impact on their daily lives. It remains our task to facilitate conditions and opportunities in which expert voices on intellectual impairment can be raised. In relational and intersubjective socio-political and research spaces, experiences of impairment are no longer bestowed upon but voiced by people who live with intellectual impairment in a disabling world—in other words, the real experts.

Appendix

To operationalise claims to citizenship, inclusive South African research might take forward important policy informing studies on the following topics:

• Entitlement and access to voting—something that is being very, very poorly formulated in South Africa (Hartley 2013; Keeley et al. 2008; Kjellberg and Hemmingsson 2013; South African Federation for Mental Health (SAFMH) 2014; Morris 2001; Ndenze 2013; Redley 2008; RSA 1998; Xingwana 2011)

• Living as intellectually impaired citizens and societal contributors not only in South Africa but also in the Global South, with examples from Thailand, Vietnam, Cambodia, Brazil, and India (Bredemeier et al. 2014; Mercadante et al. 2009; Stein and Stein 2007)

• Living with intellectual impairment as member-citizens of BRICS countries—some, like China, with questionable Human Rights histories (Cohen and Brown 2012; Daley et al. 2013; Dos Santos et al. 2009; McVilly and Dalton 2004; Stein and Stein 2007)

• Citizenship training (Bustard and Stewart 2004; Bustard et al. 2008)

• An intellectual impairment parliament (Redley and Weinberg 2007)

• Participating on government advisory boards (Frawley 2008; Frawley and Bigby 2011; Riddington 2008, 2012)

• Employment initiatives (Stein and Stein 2007)

• Effective social participation, social entrepreneurship, advocacy, agency, and mastery (Atkinson 2004; Caldwell et al. 2012; MacCann 2008; Reeve 2006b; Walmsley 2004c)

• Service use and services to intellectually impaired individuals—especially in remote rural areas in South Africa (Chenoweth and Clements 2008; Stein and Stein 2007; Heslop et al. 2004)

• Intellectually impaired children as future service users (Traustadottir 2008)

• Positive cultural attitude change campaigns (Stein and Stein 2007)

• Residential living, independent living, and social inclusion (Jackson and Irvine 2013; McKenzie and Adnams 2014; McKenzie et al. 2014)

• Life phase transitions (Atkinson 2008)

• Social identity (Field 2004; Gilbert et al. 2005; Hoogland and de Jong 2004; Hughes 2009; Loja et al. 2013)

• Sexuality and parenting (Hough 2012; McKenzie 2013b; Reinders 2008)

To operationalise claims to knowledge, inclusive local research might take forward important studies on topics such as the following:

• Unemployment, especially with regard to the relationship between intellectual impairment and unemployment in South Africa

• Inclusive vocational training, as well as further education and training at a tertiary level, for example, a citizenship course (McKenzie et al. 2014; O’Connor 2004; Reiter et al. 2009; Stein and Stein 2007)

• Teaching intellectual impairment in professional training programmes—medicine, professional psychology, nursing, and social work, for example (Smith et al. 2008), and intellectually impaired individuals as trainers and coaches

• Ownership of knowledge and commissioning of research (Grant and Ramcharan 2006; McClimens 2010; McDonald et al. 2008; Ramcharan and Grant 2004)

• Care and health research agenda setting (Cech 2006; McKenzie et al. 2013; Nierse et al. 2006; Tomlinson et al. 2014)

• Inclusive education (McKenzie and Macleod 2012a; McKenzie et al. 2013; Ngwena and Pretorius 2012)

• Collaboration with non-state actors (Stein and Stein 2007; Tilley 2004)

• Future turns in participatory research or co-research (Conder et al. 2011; Forrester-Jones et al. 2008; Janse van Vuuren et al. 2008; Johnson 2008; McDonald et al. 2013; O’Brien and Curry 2008; Read 2008; Slevin 2004; Walmsley 2004a, b)

• Future turns in emancipatory research (Hart et al. 2008; Marriott et al. 2008; McGrath et al. 2008; Walmsley et al. 2014; Williams et al. 2008)