Overprotection in the lives of people with intellectual disability in Malta: knowing what is control and what is enabling support

Abstract

A study of overprotection in the lives of persons with intellectual disability in Malta was carried out on the principles of inclusive research. Focus groups were held with people with intellectual disability, parents of people with intellectual disability, and those working with persons with intellectual disability. Overprotection is a disabling barrier. Its effects were identified in employment, leisure time, intimate relationships, and the use of public transport, money, and mobile phones. People with intellectual disabil-ity who experience overprotection live very structured lives. They cannot develop their skills, abilities, and potential. Furthermore, they cannot live their life on their own terms, but on terms determined by others. This creates a sustained dependence on others, especially the family. It is important that a balance is achieved between protection and enabling support. Persons with intellectual disability should be given the support they need to express their wishes and act on them.Despite overt policies of 'rights' and an 'ordinary life' the trend of policy is thus for people with learning difficulties to lead lives of extraordinary regulation (Riddell, Baron, and Wilson 2001, 200)

Muted voices: The unexplored sexuality of young persons with learning disability in Malta

“…These opinions were expressed by Mark and Ninu and are consistent with similar findings from research carried out within a Maltese context by Azzopardi Lane and Callus (), Debattista () and Azzopardi Lane (). As also claimed by Callus and Bonello (), the absence of opportunities for supported community living and personal assistant services is one of the major deterrents to the autonomy of persons with learning disability in Malta. The latter typically spend most of their life living with their families, who support them till they are unable to care for them any longer.…”

“…However, it is not a finding which is exclusive to this research. Several studies carried out in this context and others have reported an excessive amount of sheltering of persons with learning disability, often by parents, guardians and service providers (Azzopardi Lane & Callus, ; Callus & Bonello, ; Clark & O’toole, ; Debattista, ; Isler, Tas, Beytut, & Conk, ). In many instances, the overprotection described took the form of infantalisation, where participants reported that they were treated not as young adults but as children.…”

“…None reported going to cultural or leisure activities such as concerts, theatres, movies or other places of entertainment with friends. Similarly, participants in Callus and Bonello () whose research was based in the same context reported comparable experiences, reiterating the discourse of overprotection and depicting a similar picture, where participants confirmed that persons with learning disability only go out with their parents or with their non‐disabled siblings.…”

“…It is possible that there were more potential participants, but that either they were not identified by the gatekeepers, or their parents or guardians did not allow them to participate in the study even though they were willing to give consent . The local phenomenon of overprotection, resulting in lack of access to decision‐making, is documented in recent research (Callus et al, ). There were coincidentally more female than male participants.…”

“…This portrays persons with learning disability as perpetual children, thus being unable to consent to sexual relationships (McConnell & Llewellyn, ; Peckham, ). The infantalisation of persons with learning disability is often shrouded in overprotection leading to isolation, poor social skills and lack of information related to sexuality and relationships (Callus, Bonello, Mifsud, & Fenech, ; Wiegerink, Roebroeck, Donkervoort, Stam, & Cohen‐Kettenis, ). In research carried out in a Maltese context, Bonello and Callus (2017, p. 45) report that “…some parents even put up resistance to sex education because they find it difficult that their children may be talking about the subject.” Thus, persons with learning disability are further restricted in their sexual options by the prejudices and anxieties of parents and persons who work with them (Bahner, ; Bernert & Ogletree, ; Evans, McGuire, Healy, & Carley, ; Garbutt, Tattersall, Dunn, & Boycott‐Garnett, ).…”