Emergent voices. Exploring the lived experience of seniors with intellectual disability

ABSTRACT

In Norway, as in many European countries, there has been a major change in living conditions for people with intellectual disability over the last 30 years. State policy has changed, involving the reduction of institutional care with the aim of normalising people’s life situations and service provision. A challenge in the early years of reform was a lack of first-hand experiences. Researchers attempting to interview people with intellectual disabilities themselves about moving out of institutions concluded that this was methodologically problematic, as informants tended to answer what they thought was expected of them. While this may also reflect features of the research at that time, many of those with first-hand experiences of the reform have later confirmed that they had but a weak voice of their own. Today, their voices are stronger, and many of them provide important testimonies of the ‘true consequences’ of the reform. This article reveals some of these testimonies. Through in-depth interviews, six people with intellectual disabilities tell about their institutional lives and their present lives in the community. The strongest testimony to the reform is perhaps our informants’ ability to give words to, and reflect on, what was previously just a silent pain.

SAMMENDRAG

I Norge, som i mange europeiske land, har det vært en stor endring i levekårene for mennesker med utviklingshemming de siste 30 årene. Statens politikk har endret seg, og medført reduksjon av institusjonell omsorg med det formål å normalisere folks livssituasjoner og tjenestetilbud. En utfordring i de tidlige reformårene var mangel på førstehåndsopplevelser. Forskere som forsøkte å intervjue personer med nedsatt funksjonsevne selv om det å flytte ut av institusjoner, konkluderte med at dette var metodologisk problematisk da de mente informanter svarte på hva de trodde var forventet av dem. Selv om dette også kan gjenspeile trekk ved forskning på den tiden, har mange av dem med førstehånds opplevelser av reformen senere bekreftet at de hadde en svak stemme. I dag er deres stemmer sterkere, og mange av dem gir viktige vitnesbyrd om reformens ‘sanne konsekvenser’. Denne artikkelen avslører noen av disse vitnesbyrdene. Gjennom inngående intervjuer forteller seks eldre mennesker med utviklingshemming om deres institusjonelle liv og deres nåværende liv i samfunnet. Det sterkeste vitnesbyrdet om reformen er kanskje våre informants evne til å sette ord på og reflektere over det som tidligere bare var en stille smerte.

KEYWORDS:

• Intellectual disability
• deinstitutionalisation
• community living
• silent voices
• citizenship

NØKKELORD:

• Utviklingshemming
• Deinstitusjonalisering
• Livet i lokalsamfunnet
• Tause stemmer
• Medborgerskap

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Gunn Strand Hutchinson is professor of Social Work at Nord University. She teaches social work studies and her research interests are disability and society, preventative social work and social work in various welfare regimes.

Johans Tveit Sandvin is professor of Sociology. He teaches sociology and social work studies and his research has focused on the development, organisation and functioning of the welfare state and how different organisational and service forms affect people in vulnerable life situations.

Additional information

Funding

The Norwegian Directorate for Children, Youth and Family Affairs financed the study.