Family as failure? The role of informal help-givers to disabled people in Sweden

Abstract

Based on a survey mapping all unpaid help and care work in the county of Stockholm, this article focuses on the informal help and care carried out for longterm ill and/or disabled people aged 64 or younger. The findings indicate that these forms of support are common and that the informal help-givers work many hours every month. Yet the impact of this work is quite invisible in texts on disability policy and there is a void of research addressing this issue. This article argues that, in spite of welfare state arrangements and reforms, families play a crucial role in providing resources, notably help and care for disabled family members. Their invisibility is interpreted as an expression of the fact that the care concept has become politically incorrect. In the light of modern disability policies, with its ideals of autonomy and empowerment, help and care provided by families to adults aged 64 or younger stand out as a dilemma and a contradiction. Making help and care provided by families invisible can be interpreted as one way of solving this contradiction.

Ett långt liv med särskilda förtecken: Livslopp och åldrande hos människor med funktionsnedsättningar

“…Men den kunskap som hittills funnits, exempelvis inom socialgerontologin, har som regel rört frågor kring funktionsnedsättningar hos äldre snarare än hur det är att leva under många år och åldras med funktionshinder (Avlund 2004). På motsvarande sätt har det hittills saknats forskning och kunskap om vad det innebär att under många år av sitt liv vara anhörig till en funktionshindrad person, i behov av hjälp (DeMarle & Le Roux 2001;Jeppsson Grassman, Whitaker & Taghizadeh Larsson 2009).…”

“…"Jag har haft jouren varje dag i 37 år." Anhöriga tycks överhuvudtaget ha en betydligt centralare roll för stöd och omsorg än vad som framkommit i tidigare forskning (jfr Whitaker 2008;Jeppsson Grassman, Whitaker, Taghizadeh Larsson 2009).…”

“…Anhöriga -och inte minst föräldrar -till vuxna funktionshindrade personer tycks spela en långt viktigare roll som hjälp-och omsorgsgivare än vad som tidigare har framkommit i forskningen (Whitaker 2008;Shakespeare 2006;Jeppsson Grassman, Whitaker & Taghizadeh Larsson 2009). I föräldraintervjuerna framträdde livsberättelser präglade av ett livslångt omsorgsansvar och som mot bakgrund av de senaste decenniernas handikappolitik och reformer väcker frågor kring i vilken mån självständighet och autonomi egentligen har uppnåtts, trots till exempel personlig assistans.…”

Just Like Any Other Family? Everyday Life Experiences of Mothers of Adults with Severe Mental Illness in Sweden

“…Though research shows that close relationships and practical and emotional support from family members are vital for the recovery process (Reupert et al 2015), studies indicate that many parents feel that professionals blame them for causing the illness and that their caring responsibilities and support are neither recognised nor wanted by providers of health and social care services (Gosh and Greenberg 2012;Johansson et al 2010;Milliken and Nortcott 2003;Nyström and Svensson 2004). In addition, in Sweden, which has had comparatively abundant health and social care services, both policy and research have ignored the caring experiences of mothers and fathers of adult children (Grassman et al 2009).…”

Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

“…The LSS Act is often described as aiming to strengthen the power of the individual (Grassman, Whitaker, and Larsson 2009), but a strong legal right is not a guarantee that rights are provided to the user; the rights still have to be claimed (Lewin, Westin, and Lewin 2008). In order to receive PA, the person in need of assistance has to request it.…”