Piilotetut vaikeudet : Oppimisvaikeuksien diagnosointi, toimijuus ja toimintamahdollisuudet aikuisen elämänkulussa

Hidden difficulties. Diagnosis, agency and capabilities in the life course of adults with learning difficulties. Dyslexia, other specific learning disabilities (spLD) and attention deficit disorder (ADHD) are controversial diagnoses. The incidence of these diagnoses has increased in society and expanded from children's school difficulties to the entire life course. Most of the research on learning difficulties is focused on children from the perspectives of special pedagogy, psychology and medicine, and previous research has largely ignored the social differences and social factors related to these difficulties. Sociological studies concerning learning difficulties often focus on the medicalisation of children's school difficulties and the social construction of learning disorders. However, the medicalisation critique alone leaves sociology's contribution lacking because it does not sufficiently consider the lived experience of people with learning difficulties, their role in the social construction of these disorders, their agency and inequality related to learning difficulties. Based on the experiences of adults with learning difficulties, the study asks how to perceive and understand learning difficulties as a social phenomenon in the various life-course phases and how these experiences relate to social inequality. The research approaches learning difficulties by combining discussions from health sociology, sociologically-oriented disability studies and educational sociology. The research is anchored in sociological discussions about the medicalisation of society, agency and the capability approach. In this study, agency and capabilities are understood as possibilities, what people can do and be. These possibilities are shaped by social structures, e.g., social support and other social resources, normative assumptions and social practices of institutions. The thesis consists of a summary and three sub-studies, which analyse the diagnosis of learning difficulties, receiving support and agency, as well as capabilities during the life course, reflected from adulthood. The empirical material of the doctoral thesis is a set of interviews with 26 adults experiencing learning difficulties. All interviewees had officially been diagnosed with learning difficulties, mainly in adulthood. The most common learning difficulty was dyslexia. The data is analysed using thematic analysis, considering the narrative nature of the interviews. One sub-research was carried out as a case study, focusing more closely on the life course of the two interviewees. The research shows the changing and fluid meaning of learning difficulties, both in the life course of individuals and as a social phenomenon. In addition, the study illustrates the long-term consequences of learning difficulties during the life course and the diverse educational paths and resources of the adults interviewed. The support received for learning difficulties varied, and even severe difficulties might have gone unrecognised. The educational pathways exhibited various disruptions, such as dropping out of education. Educational desires were not always realised despite the wishes of the adults interviewed. In many cases, the difficulties experienced in literacy and learning were meaningful when they reflected on their life choices. Adolescence and adulthood offered the interviewees opportunities to reflect on and reassess their abilities and educational opportunities. However, these experiences varied in adults, as did the experiences in childhood. Various transitions and disruptions in the life course were relevant to agency and the emergence of learning difficulties. On the one hand, growing up and becoming an adult increases choice, widens opportunities for what to do and be, and helps in reassessing one's abilities. On the other hand, adulthood is linked to conflicting experiences about one's competence and abilities and limited opportunities to get help with problems experienced in learning. Diagnoses of learning difficulties in adulthood often explained negative life experiences. The diagnosis of learning difficulties had social dimensions, as it was hoped to bring help and increase understanding of perceived difficulties. Thus, the study describes the partial and contradictory meanings of medicalisation, where naming and diagnosing learning difficulties may provide more resources for self-understanding and achieving meaningful things for oneself. However, the diagnosis can simultaneously close off opportunities, or the person may remain detached from the help or support they need. Regarding inequality, the accumulation of various resources and capabilities or their deficits in the life course were crucial. This study provides new information about problems related to the education and work of adults with learning difficulties and getting support. The research widens both the critical perspectives on the medicalisation of society and the processes of educational inequality in relation to adults with learning difficulties. The research results are useful in promoting equity in education and working life and developing social support practices. Piilotetut vaikeudet. Oppimisvaikeuksien diagnosointi, toimijuus ja toimintamahdollisuudet aikuisen elämänkulussa. Lukivaikeus, tarkkaavuusvaikeudet (ADHD) ja muut oppimisvaikeudet ovat yleistyneet yhteiskunnassa ja laajentuneet lasten kouluvaikeuksista koskemaan koko elämänkulkua. Pääosa oppimisvaikeuksia koskevasta tutkimuksesta on lapsiin keskittyvää erityispedagogiikan, psykologian ja lääketieteen alalta, ja oppimisvaikeuksia on tutkittu vain vähän yhteiskuntatieteellisestä näkökulmasta. Tutkimuksessa kysytään, millaisena sosiaalisena ilmiönä oppimisvaikeudet näyttäytyvät aikuisen elämänkulussa ja miten oppimisvaikeuksia koskevat kokemukset kytkeytyvät yhteiskunnalliseen eriarvoisuuteen. Tutkimus hyödyntää sosiologisia keskusteluja yhteiskunnan lääketieteellistymisestä, toimijuudesta ja toimintavalmiusajattelusta. Toimijuus ja toimintavalmiudet ymmärretään tutkimuksessa yhteiskunnallisiin rakenteisiin kytkeytyviksi toimintamahdollisuuksiksi, jotka paikantuvat yksilötoimijoiden ohella sosiaaliseen tukeen ja muihin yhteiskunnallisiin resursseihin, normatiivisiin oletuksiin ja yhteiskunnallisiin käytäntöihin. Tutkimus koostuu yhteenvedosta ja kolmesta osatutkimuksesta, jotka analysoivat oppimisvaikeuksien diagnosointia, tuen saamista ja toimijuutta sekä toimintamahdollisuuksia elämänkulun aikana aikuisuudesta käsin tarkasteltuna. Väitöstutkimuksen empiirisenä aineistona ovat 26 oppimisvaikeuksia kokevan aikuisen haastattelut. Kaikilla haastateltavilla oppimisvaikeudet oli todettu virallisesti, useimmiten aikuisuudessa. Yleisin oppimisvaikeus oli lukivaikeus. Aineisto on analysoitu temaattisen analyysin keinoin huomioiden haastattelujen kerronnallisuus. Tutkimus tuo esille oppimisvaikeuksien merkityksen muuttumisen sekä yhteiskunnallisena ilmiönä että yksilöiden elämänkulussa. Lukutaidossa ja oppimisessa koetuilla vaikeuksilla oli merkitystä omille elämänvalinnoille ja koulutuspoluille, mutta oppimisvaikeuksiin saatiin vaihtelevasti tukea koulutuksen aikana. Erilaiset koulutukseen ja työhön liittyvät siirtymät, säröt ja katkokset olivat merkityksellisiä oppimisvaikeuksien ilmenemisessä ja avun hakemisessa. Oppimisvaikeuksien diagnosointi aikuisuudessa selitti omia elämänkokemuksia, ja sen toivottiin tuovan apua ja lisäävän ymmärrystä koetuista vaikeuksista. Tästä huolimatta diagnoosi saattoi jäädä irralliseksi tarvittavasta avusta tai tuesta. Tutkimus havainnollistaa oppimisvaikeuksien pitkäaikaisia seurauksia elämänkulussa ja erilaisten yhteiskunnallisten tekijöiden merkitystä näiden muotoutumisessa. Tutkimus tuo uutta tietoa oppimisvaikeuksia kokevien aikuisten kouluttautumiseen ja työhön liittyvistä ongelmista ja tuen saamisesta yhteiskuntatieteellisestä näkökulmasta käsin tarkasteltuna.