Reluctant ‘Jailors’ speak out: parents of adults with Down syndrome living in the parental home on how they negotiate the tension between empowering and protecting their intellectually disabled sons and daughters

Abstract

Accessible summary This study looks at the issue of the social lives of adults with Down syndrome who are living at home with their parents. Sometimes, for the very best of reasons, the parents of adults with Down syndrome try to prevent their adult son or daughter with Down syndrome from going out on their own, from having a boyfriend or a girlfriend etc. In this study, I talk to a group of parents about how they feel when they think about the kind of social life their sons and daughters with Down syndrome have. For example, I ask them are they happy with the amount of friends that their son or daughter has, whether their son or daughter has a boyfriend or girlfriend, whether they would like to see their son or daughter get married etc. Because of the role played by parents in the social lives of their intellectually disabled adult son or daughter, it is very important for everybody concerned with the quality of life enjoyed by adults with an intellectual disability to understand why their parents think and act the way they do. Summary While the language of empowerment and human rights have taken centre stage in both the disability literature and disability service provision for adults with intellectual disabilities. One area where there exists a disconnect between theory and practice, in the Republic of Ireland at any rate, lies in the parental home and the role played by parents of adults with intellectual disabilities (this study focuses specifically on adults with Down syndrome) in acting as gatekeepers of their son or daughters social life. For the best of paternalistic reasons, many parents of adults with Down syndrome severely restrict the life choices of their adult sons or daughters. This is particularly the case when it comes to the regulation of their son or daughters sexuality, a possible effect of which may be to effectively deprive their intellectually disabled son or daughter of the opportunity of ever entering into an intimate sexual relationship with another human being. So are parents of adults with Down syndrome actually playing the role of ‘reluctant jailors’? If yes, how do they navigate the enormously tricky terrain that characterises the Scylla and Charybdis like tension between trying to empower their adult son or daughter with Down syndrome while at the same time doing all they can to insure they come to no harm? This study interviews ten parents on the earlier issues, to gain a greater phenomenological understanding on the predicament that many parents of adults with Down syndrome believe themselves to be in.

A family systems perspective on supporting self‐determination in young adults with intellectual and developmental disabilities

“…Although cognitive ability may impact the support needed to develop and express self‐determination, socioecological factors are essential for understanding this difference (Shogren, ; Wehmeyer et al, ). People with IDD experience more directive relationships and restrictive environments than do those without IDD (Foley, ; Saaltink, MacKinnon, Owen, & Tardif‐Williams, ; Stancliffe et al, ); thus, they have fewer opportunities to develop skills that significantly predict self‐determination, including choice making (Wehmeyer & Garner, ) and goal setting (Shogren, Wehmeyer, Palmer, & Paek, ). Research has reliably demonstrated that people with IDD have the capacity to become more self‐determined through interventions that target component skills (Algozzine, Browder, Karvonen, Test, & Wood, ; Cobb, Lehmann, Newman‐Gonchar, & Alwell, ).…”

Co-constructed caring research and intellectual disability: An exploration of friendship and intimacy in being human

“…For intellectually disabled people the management of personal relations is often overseen by professional carers, mothers/fathers, or other family members (Foley 2012, Hollomotz 2011, Rogers, in press, 2013, Shakespeare 2006). This moral, ethical, practical and political dilemma necessitates further action (Kittay and Carlson 2010) as a 'radical reconceptualization of the public-private dichotomy' needs commitment (Robinson, 2011: 31) in order to see and promote the socio-political as an all-encompassing 'care space'.…”

“…Sherrie did not want a third party negotiator to position herself as a researcher. When we come to question the mother/daughter relationship as researchers, we know that families and more often mothers have an important and necessary part to play in disability research (Rogers, 2007, 2013, Foley 2012, Hillyer 1993, Runswick-Cole and Goodley 2013, Ryan and Runswick-Cole 2008, Walmsley and Mannan 2009). Moreover, we are not alone in doing research together as family members.…”

“…Emotional, because the sexual and intimate is often understood as a private and personal relationship with the self and (an)other in understanding being human (Groner 2012, Lafferty et al 2013). Yet also socio-political as for intellectually disabled adults, sexual and intimate experiences are often a public affair governed by parents and/or carers (Foley 2012, Hollomotz 2011, Shakespeare 2006, destabilizing what we might consider a human right to make decisions about our body and life (for example about contraception see McCarthy, 2009McCarthy, , 2010. Not being recognised as a potential sexual partner, or experiencing lack of autonomy due to a physical disability (Sakellariou 2012, Siebers 2012, being socially and emotionally isolated as a result of 6 mental illness (Gillespie-Sells et al 1998, Shakespeare, 2006 and feeling unloved, lonely and infantilised, as well as experiencing, at times, extreme governance and violence -because of an intellectual impairment (Hollomotz 2011, Kelly et al 2009, Kim, 2011, Richards et al 2012) are disabling processes and dehumanizing.…”

The changing face of parent advocacy: a long view

“…Families also report problematic relationships with professionals, and difficulty in getting the family's knowledge of the person taken into account (Bibby 2013;Davys, Mitchell, and Haigh 2014;Jingree and Finlay 2012;Michael 2008;Ryan 2015a;Ryan and Runswick-Cole 2008). Lastly there is an enduring challenge of achieving a balance between autonomy and protection (Foley 2012;Ledger et al 2016;Tilley et al 2012) in which families are often considered risk averse.…”