"Dom säger att jag ser mer normal ut med benproteser": om samhällskrav kontra barns behov
1995 (Swedish)Doctoral thesis, monograph (Other academic)Alternative title
"They say I look more normal with artificial legs" : children's needs versus society demands (English)
Abstract [en]
The aim of this dissertation study is to explore what it meant to thirteen persons to grow up with severe limb deficiencies (due to Thalidomide) and under the extreme life-conditions that indirectly became the consequences of their impairments. Aspects discussed concern:
- The functional, social and psychological value of artificial legs from early childhood to grown up age seen from the persons' own perspective.
- The meaning of growing up with severe limb reduction and with extreme long-time hospital stays, without parents, having corrective splints, plaster castings, operations and even amputations of deformed feet and legs to make them fit into the prostheses, having intensive prosthetic training etc.
The study focuses on the thalidomide persons' experiences, feelings and views expressed in deep interviews, group discussions and life-stories. Additional data are interviews with parents and staff working with the children in the 1960-ies, data from medical records and protocols from habilitation team meetings.
The results show that the thalidomide persons' memories of their habilitation years are pervaded by fear, separation anxiety, restriction of movement, lack of physical and psychological control and integrity, a feeling of non-acceptance. The results are discussed also in terms of threat to identity expressed as threat to basic trust, threat to agency, threat to integrity and threat to belonging. To cope the children developed psychological strategies to survive. Intense striving for emotional and/or functional independence and isolation of emotions were strategies that were very obvious to themselves and that sometimes caused problems in adulthood.
As a final part the thalidomide persons' life conditions were focused from a society perspective. How could this happen? What are we allowed to do to children? How far can striving towards adaptation and normalisation take a society? Analyzing old protocols about amounts spent on technological research compared to the resources spent on supporting the children and their parents in their extreme social and emotional situation gives an insight into societal priorities, attitudes to disabled people, reifying technological solutions of existential matters and objectifying children.
Place, publisher, year, edition, pages
Stockholm: Pedagogiska institutionen, Stockholms universitet , 1995. , p. 204
Series
Doktorsavhandlingar från Pedagogiska institutionen, Stockholms universitet, ISSN 1104-1625 ; 73
Keywords [sv]
Barn Habilitering Benproteser Sverige
National Category
Pedagogy
Identifiers
URN: urn:nbn:se:su:diva-155507Libris ID: 7611028ISBN: 91-7153-317-6 (print)OAI: oai:DiVA.org:su-155507DiVA, id: diva2:1201576
Public defence
1995-05-06, G-salen, Biologihuset, Frescati, Stockholm, 10:00
Note
Med sammanfattning på engelska
2018-04-262018-04-262019-06-11Bibliographically approved