Social Policy and Social Capital: Parents and Exceptionality. Kenningar og aðferðir Dóra S. Bjarnason Fundur með doktorsnemum 21. okt. 2010

Social Policy and Social Capital: Parents and Exceptionality.

Kenningar og aðferðirDóra S. Bjarnason

Fundur með doktorsnemum 21. okt. 2010

• Rannsóknin 2005/2006-2009: • Rannsóknin beinist að reynslu foreldra fatlaðra barna

af formlegum og óformlegum stuðningi v/fötlunar barnsBörnin eru fædd á tímabilinu 1974-2007.

• 1979-2008 lagarammi, stofnanir og þjónusta við fatlað fólk tekur á sig mót –og/eða er aðlagað til að mæta þörfum fatlaðs fólks og fjölskyldna þess..

• Tímabil mikilla breytinga á íslensku samfélagi og breytinga á velferðarstefnu, menntakerfi, heilbrigðiskerfi og stefnu í málum fatlaðs fólks. Við tók hrunið, samdráttur og endurskipulagning velferðarkerfisins, sem ekki er séð fyrir endann á...

Erindi fyrir doktorsnema 21.okt. 2010

2Dóra S. Bjarnason

• Markmið: 1. – Lýsa og kanna reynslu foreldra fatlaðra barna og unglinga af því að ganga með og eignast fatlað barn og annast það og reynslu af mismunandi stuðningi við barnið og fjölskylduna .

2. – Bera saman reynslu foreldra fatlaðra barna sem spannar um 33 ára tímabil, tímabil breytinga og uppbyggingar á þjónustu .

3. – Rannsaka hvort og þá hvernig er háttað samhengi milli stuðnings við foreldrana og börnin og ákvarðana sem foreldrar taka s.s. úrræði sem þeir velja fyrir fötluð börn sín.

4. – Varpa ljósi á afleiðingar aukinnar sérhæfing þjónustu við fötluð börn og fjölskyldur þeirra fyrir möguleika fatlaðra á fullgildri, virkri þátttöku í samfélaginu og benda á með hvaða hætti almennur og sérhæfður stuðningur getur eflt fötluð börn og fjölskyldur þeirra.


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• Spurningar:• Hvernig orkar stefna stjórnvalda í

velferðarmálum fatlaðs fólks á “lífsgæði” fjölskyldna með fötluð börn á tímabilinu?

• Hvaða formlegan og óformlegan stuðning gátu foreldrar leitað í á tímabilinu, og hvernig hefur slíkt breytt hugsmíðinni um fötlun í fjölskyldum og hvers vegna?


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• Eigindlegar aðferðirÚrtak: Strategic sampling

• 75 fjölskyldur (75 mæður, 51 faðir/maki)

• Gögn:

• Hálfopin viðtöl við annað eða báða foreldra

• Viðtöl við 5 pör (5 karla og 5 konur) sem völdu að eyða fóstri vegna skerðingar þess

• Viðtöl við 12 fagaðila

• 3 focus group viðtöl við starfsfólk sem veitir þjónustu á svæðum eða heima í héraði og

þjónar fötluðu fólki og fjölskyldum þess.

• Greining ritaðra gagna.


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Vinnuferlið• Kveikjan að rannsókninni?• Mínir fyrirfram dómar (biase)• Undirbúningur (leyfi og samverkefólk).• Leit að úrtaki• Viðtöl ákveðin (feður/mæður)• Viðtölin • Afritun• Greining og túlkun• Siðferði í rannsókninni• Ritun niðurstaðna

Erindi fyrir doktorsnema 21.okt. 2010 6Dóra S. Bjarnason

Foreldrar og velferðarstefnan

Hópur 1. Börn fædd 1974-1983 (15 fjölskyldur)




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Fræðileg sjónarhorn

Félagslegar mótunarkenningar (social constructionism) Ég hef áhuga á því hvernig fólk “skapar saman” merkingu þegar það stendur andspænis breytingum.

Kenningar um félagsauð(Bourdieu, Coleman, Putnam, Allan)

Poststructuralism (Foucault 1975, Allan 2008)

Orð: FötlunFormlegur og óformlegur stuðningurBindandi-, brúandi- , tengjandi félagsauðurMenningarauðurFélagsleg velferðarstefna Erindi fyrir doktorsnema

21.okt. 2010 Dóra S. Bjarnason

• Félagslegar mótunarkenningar (social constructionism) og fötlunarfræði

Disability: As the concept is used here it is a complicated and multidimensional socially constructed concept. A social relational model of disability is applied in this study (Bjarnason, 2004; Gabel, 2001; Tøssebro, 2002). From that perspective, “disability” is seen to be a social construct, relational, situational and relative.

Disability studies grow out of a paradigm that rejects the basic epistemology of positivist empiricism that objective facts can be clearly distinguished from values (Ferguson and Ferguson, 1993). Disability studies have a broad and diverse base in the practical experiences of disabled people, and in diverse academic fields such as history, sociology, cultural studies, literature theory, law, public policy, and ethics. Several theoretical stances can be located within a broad social model of disability (Gabel, 2001). What unites disability studies is neither one coherent academic field nor a body of theory, but the claim that the field and its work should be emancipating for and relevant to the practical interests and experiences of disabled people.


• The social constructionist position focuses on social processes, inter-subjectivity and interaction (Berger and Luckman, 1967). From the social constructionist perspective we are invited to consider critically the social origins of our taken-for granted assumptions about our perceived reality. Social constructionism does not consist of one unified theoretical approach, but on basic assumptions that create “family resemblance” amongst social constructionists (Gergen, 1994). A social constructionist perspective sharpens the understanding of how the parents in this study perceived their experiences, and how that impacted family activity settings, parents’ identities and self images (Ferguson, 2001a). Thus, this lens helps broaden and deepen our understanding of the experiences of parents of disabled children, youth and young adults in times of change in Icelandic society, and hopefully opens up new positive improvements and solutions.


Dóra S. Bjarnason 11

Key suppositions of Social Constructionism

1. The terms by which we account for the world and ourselves are not dictated by the stipulated objects of such accounts. 2. The terms and forms by which we achieve understanding of the world and of ourselves are social artifacts products of historically and culturally situated interchange amongst people. 3. The degree to which a given account of the world or self is sustained across time is not dependent on the objective validity of the account, but on the vicissitudes (shifting and unforeseen) of social processes. 4. Language derives its significance in human affairs from the way in which it functions within patterns of relationships.

From Gergen –Realities and relationships: Soundings in Social Construction 1994)



Some perspectives – self and society

Individual/Self Society

Symbolic interactionism Relationships, Perspective taking

HermenuticsInterpretivism

Phenomenology

GenerationsIndividuals and groups

History/ cultureand societySocial constructionism

Intersubjectivity/ communication

A web of relationships-past and pressent

Postmodern interactionism/Social constructionismDecentrated complex web of relationships as social text Discourse analysis

Satiated selfChoice lifestylesChoice self

End of Individual orIndividual moral choices

Cultural dissemination

High modernity /risk cultureRisk society

Gettho of diversity,fragmentation and decentrationCulture making futuredifferent from the pressent

Poststructuralists Postmodernism: sociology of the postmodern


• Kenningar um félagsauð

• The term “social capital” is useful for understanding the parents’ access to and engagement with formal and informal support. I align my use of the term with the work of my colleagues at the AERS Schools and Social Capital Network in Scotland (Allan, Ozga, and Smith, 2009; Bjarnason, 2009a). They base their definition on a literature review of the term social capital and a review of social capital theory. The three people shaping the meaning of the term are Bourdieu (1986), Putnam (1995, 2000) and Coleman (1994) but the AERS scholars draw on wider common denominators of the concept’s usage (Allan, et al., 2005). These common denominators include “trust, feelings of belonging and being valued (e.g. shared values) and networks of quality interactions, with a particular emphasis on bridging and linking. …

• The term social capital can amongst other things imply relational behaviour that has emotional perceptual consequences, and it can be taken as an economic metaphor implying a form of power or a resource to be utilised. The level of analysis at which one can put this term to work is micro (the individual in context), mezzo (the organisation or the community) and macro (civic society). This concept helps explore both inclusionary and exclusionary factors at play over time and at different levels within Icelandic society. The concept also helps unravel the structures that make up the formal support systems, and how these legitimate the constructs of the “disabled family”, and why (Bjarnason, 2009a).

• Erindi fyrir doktorsnema 21.okt. 2010 13Dóra S. Bjarnason

• Poststructuralism (gl.1)

• Poststructuralistic perspectives are brought to the study in order to deconstruct meanings, patterns of legitimating principles, and hidden contradictions and dilemmas within the text (Giddens, 1993; Schwandt, 2001).

• Poststructuralist “arguments” by their very nature attempt to destabilise received conceptions of science, order, society and self. …brings to the study tools for the deconstruction of and critical reflection on the experiences of parents of disabled children over time, and to depict power relations, exclusionary processes and the complexities of the family and the parents’ existence.

• Foucault (1963/1975) argues that power is situated in social institutions, practices and social relations, and that power and the exercise of power is neither good nor bad but productive and repressive. Power is seen to be exerted through language that produces authoritative and subordinate knowledges. Language is seen as a powerful means of constructing, regulating or disciplining people and places. Power disperses throughout society, through institutions, civil society, and individuals. This approach helps us here to deconstruct the power relations between the parents of disabled children and the professionals they encounter and need for themselves and their children. Foucault’s concept the gaze or the medical gaze (Foucault, 1963/1975) is useful to open up the practices of medicine and of education as demonstrations of power, both enabling and disabling, producing “special subjects” and “special spaces”, encountered by the parents.


• Poststructuralism (gl.2)• Dæmi: Goodley (2007) uses concepts developed by the

post-structuralist philosophers Deleuze and Guattari in his research involving parents of disabled children and policy issues. He employs the philosophy of difference to open up new spaces for unpacking our understanding of disability in the family. He uses the term rhizome, which can refer to a plant (an orchid, potato or weeds), a constantly assembling and disassembling multi-layered heap of multiplicity (e.g. ants, the orchid or the wasp), to symbolise a mode of knowledge, which allows for multiple, non-hierarchical entry and exit points in the representation and interpretation of data. For Deleuze and Guattari (1987, p. 21) the rhizome “is oriented towards experimentation in contact with the real”, a tool that helps shift perspectives and open up data in a new, enlightening way.


• Poststructuralism (gl.3)• Goodley invokes the term for mapping the families in his research. He

describes parental roles as rhizomatic, and he refers to fathers and mothers as becoming, as always in the middle, as weaving away and as lines of flight (Goodley, 2007). I find this approach both interesting and playful. It helps me think about family situations and parents’ actions in a different way. There is no normality or abnormality, and no better or worse ways of conduct, but different ways of becoming, different lines of flight. Rhizomatic parents are always in the middle, taking the “strangest” things as they come, however unexpected. They always find new ways around, under, over or in a different direction from obstacles, whether erected by professionals, the bureaucracy, or the public, as in lines of flight.

• A rhizome, for example the potato plant, connects any point to any other point, and its traits are not necessarily linked to traits of the same nature; it brings into play very different regimes of signs, and even nonsign states. It is reversable, modifiable, and has multiple entranceways and exits and its own lines of flight (see Deleuze and Guattari, 1987, p. 21).

• The rhizome is [….], a MAP AND NOT A TRACING. The orchid does not reproduce the tracing of the wasp; it forms a map with the wasp, in a rhizome. What distinguishes the map from the tracing is that it is entirely oriented toward an experimentation in contact with the real (see Deleuze and Guattari, 1987, p. 21).



• Pantextualism – everything is a text – all texts are interrelated.

• Subjects, authors or speakers are irrelevant to the interpretation of texts.

• Meaning is unstable, never fixed, never determined, never representational.

• Deconstructionism is a post structuralistic strategy for reading texts that unmasks the supposed truth, or

meaning of text by undoing, reversing or replacing taken for granted binary oppositions that structure texts.

(Giddens 1991)

Poststructuralism claims:


DÆMI úr Gagnasafni


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•Móðir Jóns (f. 1974): “ Það var enga þjónustu að fá hérna þá – við urðum að senda hann frá okkur á …. (stofnunina).”

• Móðir Sifjar (f. 1986): “ Hún hefur verið lífið mitt. Ég hef barist fyrir öllu, notað öll mín sambönd, og hún fékk sumt af því sem hún þurfti. Ég er farin að þreytast, en mundi gera þetta allt aftur ef ég mætti til…”

• Faðir Kristjáns (f. 1989): “Ég gef dauðan og djöfulinn í þetta kerfi (t.r., svæðisskrifstofa) Ég hringi bara í ráðherran ef ég verð. Hann er frændi konunnar og við þekkjumst úr flokknum…”

• Faðir Freyju (f. 1992). “Við notum eins lítið af þessari þjónustu og við getum, nema skólann.Við erum prívat fólk og erum vön að sjá um okkar mál sjálf. Ef við þurfum eitthvað sérstakt þá leitum við auðvita ráða hjá kollegum okkar…”

Erindi fyrir doktorsnema 21.okt. 2010 Dóra S. Bjarnason


Móðir Þorsteins (f. 1995):

“Þetta er allt svo hræðilega flókið.Við fengum alla þá aðstoð sem kerfið gat boðið okkur, en heimilið okkar var eins og torg – fullt af ókunnugu fólki sem kom og fór….”

“Þetta er nú vandamál kerfisins”

“Ég hef barist í mörg ár fyrir að koma honum inn á sambýli fyrir fötluð börn…”

“Hann flutti í apríl og við erum að fá lífið okkar aftur . Við höfum gert okkar besta og munum auðvitað heimsækja hann og svona…við elskum hann öll, sérstaklega pabbi hans…”


Móðir Guðrúnar (f. 2000 í tilraunasveitarfélagi) “Þetta var alveg hræðilegt – ég var svo hrædd, en svo hefur bara allt gengið upp.…Læknirinn kom…ung stelpa í gallabuxum og bol. Hún sagði okkur það … [um litningagallan]. Hún settist á rúmið mitt, hlustaði á okkur…sagði okkur hvað hún vissi og hvað hún vissi ekki …”

“…Gummi (kærastinn) var frábær, og fjölskyldurnar okkar og allir vinir okkar komu, sendu SMS og hringdu. Ég grét nú samt í marga dagaen svo kom Jóna. Hún hringdi fyrst og spurði hvort hún mætti koma…”

“Hún var yndisleg, gaf okkur upplýsingar, bauðst til að fylla út alls konar eyðublöð, fann sjúkraþjálfara fyrir hana og svona bara áfram…Hún lét okkur hafa gemsanúmerið sitt og sagði okkur að hika ekki viðað hringja… Hún er góð og skemmtileg og lítur inn eins og vinur. …Við buðum henni í brúðkaupið okkar…”


Rannsóknin kemur út á bók í nóvember

Bjarnason, D.S. ( 2010). Parents and Exceptionality: Social policy and social capital. Experiences of having a disabled child 1974-2007.

New York: NOVA Science publishers

Erindi fyrir doktorsnema 21.okt. 2010 Dóra S. Bjarnason 22

Documents

Social Policy and Social Capital: Parents and Exceptionality. Kenningar og aðferðir Dóra S. Bjarnason Fundur með doktorsnemum 21. okt. 2010