The discourse concerning Kópavogur Institute

Í árslok 2016 kom út skýrsla um könnun á vistun barna á Kópavogshæli á árunum 1952– 1993. Í niðurstöðum skýrslunnar kom meðal annars fram að börn á Kópavogshæli hefðu sætt ofbeldi, illri meðferð og vanrækslu. Í kjölfar útkomu skýrslunnar varð mikil umræða í frétta- og vefmiðlum. Í greininni er leitast við að rýna í eðli þeirrar orðræðu sem fram fór og til þess nýttar aðferðir sögulegrar orðræðugreiningar. Í orðræðugreiningunni þróuðust þrír meginorðræðuflokkar: Í fyrsta lagi lærdóms- og baráttuorðræða sem var fyrirferðarmest í gögnunum. Lærdóms- og baráttuorðræðan var í anda félagslegs mannréttindaskilnings á fötlun þar sem litið var svo á að ofbeldið og vanrækslan gagnvart börnunum á Kópavogshæli væri mannréttindabrot sem stjórnvöldum bæri að bæta fyrir. Orðræðan snerist einnig um kröfuna um aukinn rétt fötluðu fólki til handa og vakin var athygli á að enn skortir mikið á að mannréttindi þess séu virt. Í öðru lagi kom fram eins konar varnar- eða réttlætingarorðræða fyrrverandi starfsfólks um það að hafa lítið getað spornað gegn því ofbeldi sem börnin á Kópavogshæli urðu fyrir. Fram kom að stjórnvöld hefðu brugðist börnunum á hælinu á meðan starfsfólkið reyndi að gera sitt besta við ömurlegar aðstæður. Gagnstætt þeim félagslega mannréttindaskilningi sem greina mátti í lærdóms- og baráttuorðræðunni kom þarna skýrt fram læknisfræðilegur skilningur á fötlun þar sem börnunum var lýst sem fórnarlömbum í þörf fyrir gæsku og bent á fórnarlund starfsfólksins sem vann á hælinu. Í þriðja lagi kom fram gagnrýnin orðræða fatlaðra aðgerðasinna en hún skar sig mest úr orðræðunni um Kópavogshælið. Þar voru fjölmiðlar harðlega gagnrýndir fyrir að hafa ekki leitað eftir áliti fatlaðs fólks á skýrslunni og því ofbeldi sem börnin urðu fyrir. Auk þess kom fram gagnrýni á það að ófatlað fólk hefði einokað orðræðuna um Kópavogshælið, eins og einkennt hefði orðræðu um fatlað fólk frá örófi alda.At the end of 2016 a report was published relating to an investigation into the circumstances of children residing in Kópavogur Institute during the period 1952-1993. A committee, appointed by the Prime Ministry, compiled the report, the main aim of which was to investigate whether and, if so, to what extent children resident in Kópavogur Institute had been badly-treated or subjected to violence during their stay. The conclusions of the report present a highly negative perspective of the children‘s circumstances, indicating that children at Kópavogur Institute were the victims of significant violence, bad-treatment and neglect. The publication of the report gave rise to extensive news and web media coverage and this article attempts to analyse the characteristics of the consequent discourse, using the methodology of historical discourse analysis (Foucault, 1972). This research covered the time interval from 7 February until the end of March 2017; that is, the period when the discourse on the report reached its highest level. The article seeks to answer the following questions: What is it that characterises the discourse on Kópavogur Institute? Which common threads are found in the discourse and which contradictions? The research also posed the question of how far the discourse reflects a social human rights perception of disability and whether/how ableism can be detected within the discourse. The discursive themes which repeated themselves in the data were emotions such as sorrow, anger and shame; sorrow because of the violence and neglect the children at Kópavogur Institute were subjected to; anger directed towards the authorities, the management and staff of the institute and shame felt by the children‘s close relatives and staff because they could not prevent, or did not even notice, what was happening at the institute. Three main discourse themes were developed in the discourse analysis: The first discourse theme mainly focused on what can be learned from the outcome of the report. This discourse was most conspicuous and occurred within all the three discourse themes. The discourse was in the spirit of a social and human rights perception of disability, where the violence and neglect the children at Kópavogur Institute were subjected to was regarded as a human rights violation for which the authorities had incurred liability. It was maintained that the violence towards the children and the neglect they suffered was of social origin where obstacles such as negative attitudes and ideological systems, lack of services, staff shortages and inadequate official supervision had led to the conditions identified at Kópavogur Institute. The discourse also expressed the demand that current rights of persons with disabilities must be improved, and emphasised serious failings in respecting t human rights. Secondly, defensive and justificatory discourse occurred. This discourse contained significant contradictions. On the one hand, a social and human rights understanding was identified, similar to that expressed in the first discourse theme, described above. On the other hand, a distinct medical perception of disability was also expressed, where the violence towards the children was justified, placing them in the roles of victims in need of the care and kindness administered by the staff at the institution. Thirdly, critical discourse developed originating among disabled activists. This discourse stood out most among the discourse themes relating to Kópavogur Institute. The media were severely criticised for not taking interest in the reactions of disabled people to the report and the violence the children had to endure. Strong disapproval was also expressed with a view to the fact that non-disabled people had monopolised the discourse on the Kópavogur Institute and that a professional organisation, Þroskaþjálfafélag Íslands (the Association of Icelandic Social Educators), had made use of the violence towards children at the institute as a tool in the struggle for improved pay and terms of employment. As a whole, therefore, it may be concluded that one of the characteristics of the discourse regarding Kópavogur Institute was its domination by people without disabilities so that it mostly comprised the dialogue of the non-disabled about disabled people. As Foucault (1972) pointed out, discourse analysis enables us to identify power and power relationships in modern societies. People without disabilities have, through history, controlled the discourse about disabled people who themselves have not been given the opportunity to influence the general debate on their own situation in society. This is clearly brought out in the discourse relating to Kópavogur Institute, since, as disabled activists pointed out, the media did not show an interest in adding their voices or opinions to the ongoing debate.Peer Reviewe

Autonomy and people with intellectual disabilities and high support needs : "We have always done it this way; it is in their best interest"

Sérrit 2015 – Hlutverk og menntun þroskaþjálfaMarkmið þeirrar rannsóknar sem hér er til umfjöllunar er að greina þá þætti sem helst hafa áhrif á sjálfræði fólks með þroskahömlun sem þarf mikinn stuðning í daglegu lífi. Um er að ræða viðkvæman hóp sem lítið hefur verið til umfjöllunar í rannsóknum og því verður auk þess sjónum beint að nokkrum af þeim fjölmörgu siðferðilegu áskorunum sem upp komu í rannsókninni. Byggt var á þátttökuathugunum á heimilum 24 einstaklinga á aldrinum 26–66 ára. Auk þess voru tekin rýnihópaviðtöl við 12 starfsmenn á heimilum fólksins. Í niðurstöðum kemur fram að starfsfólk á heimilum fólksins var í lykilhlutverki þegar kom að möguleikum þátttakenda til þess að þroska sjálfræði sitt. Viðhorf, þekking, stuðningur starfsfólks og skipulag á heimilum fólksins höfðu afgerandi áhrif. Á meðan einstaklingsmiðaður stuðningur efldi sjálfræði dró stuðningur sem miðaður var út frá heildinni úr möguleikum þátttakenda til sjálfræðis og ýtti undir stofnanamiðaða þjónustu byggða á stífum reglum, rútínu og vana. Stuðningur sem byggðist á virðingu fyrir gildi manneskjunnar, þekkingu á mannréttindum, lagalegum réttindum og félagslegum skilningi á fötlun jók hæfni starfsfólks til að styðja sjálfræði þátttakenda. Vanþekking, skortur á fagfólki og mannekla á mörgum heimilanna kom aftur á móti í veg fyrir að þátttakendur hefðu tækifæri til að þróa sjálfræði sitt. Auk þess hafði þekking starfsfólks og næmi á tjáskiptaleiðir fólksins mikil áhrif á möguleika þess til að tjá vilja sinn og þróa sjálfræði sitt. Af niðurstöðum rannsóknarinnar má álykta að bæði þurfi að auka stuðning verulega og breyta skipulagi á heimilum fólksins. Breitt bil virðist vera milli réttar fólksins til að taka sjálfstæðar ákvarðanir, sem birtist meðal annars í lögum og mannréttindasáttmálum, og þess veruleika sem við því blasir.The aim of this article is to demonstrate how people with intellectual disabilities and with high support needs make choices in their homes and daily lives and to explore which factors influence, help or hinder them from developing and achieving individual autonomy. People with intellectual disabilities, generally, and people who have high support needs, more specifically, are not well represented in disability studies. One of the reasons might be limited knowledge of research methods in this area. Therefore, attention will also be paid to some of the ethical and methodological challenges faced in the research. The article draws on qualitative research with 24 people, aged 22–66 and employs ideas of relational autonomy from the perspective of the Nordic relational approach to disability. The relational approaches fit well with the United Nations’ Convention on the Rights of Persons with Disabilities, which assumes that dis-ability stems from interaction between people with impairments and attitudinal and environmental barriers. Furthermore, the convention recognizes the im-portance of individual autonomy and independence for disabled people. The study began in 2011 and is scheduled to end in 2016. The data were collected through participant observation in people’s homes and focus group interviews with 12 staff members. The findings of the study indicated that three main factors helped or hindered the participants from developing and achieving individual autonomy, and in all those factors staff played the major role. These factors are; firstly, staff perceptions of people with intellectual disabilities; secondly, staff knowledge and, thirdly; the structure of the participants’ homes and the support they receive from staff. The findings of the study indicate that the support this group of people receive in their homes often has institutional characteristics, with each day structured around the same routine with little variation. The staff tried to do their best but understaffed shifts, lack of knowledge, (e.g., of the human and legal rights of disabled people and methods such as alternative communication), and an inade-quate social understanding of disability were the factors that hindered people’s development and autonomy. The findings also suggest that people’s way of making choices depends upon their relationship with their caretakers and the quality of the support they receive. Furthermore, in cases of appropriate support, people could develop individual autonomy and make their own choices. The Convention on the Rights of Persons with Disabilities specifically recognizes the importance, for all persons with disabilities, of their individual autonomy and independence, including the freedom to make their own choices. The Icelandic representative signed the Convention, and even though it has not been ratified, Icelandic legislation stated that the execution of the law should be guided by the Convention. The findings of the study indicate that despite these legal rights, a discrepancy remains between the legal rights and the reality most of the parti-cipants had to face.Ritrýnd grei

Autonomy and People with Intellectual Disabilities Who Require More Intensive Support

In this article we explore the personal autonomy of people with intellectual disabilities who require more intensive support. The authors draw on qualitative research in Iceland carried out in the homes of 24 individuals. It is demonstrated how their personal autonomy can be defined, evaluated and enhanced in their daily lives. The conclusions show that to be able to respect personal autonomy of the participants those who support them need to view them as socially embedded, where personal autonomy is formed in relation to other people. To do that we refer to the idea of relational autonomy with support, advocacy and enablement being regarded as key elements for personal autonomy to flourish. By using this approach it is possible to note a positive change regarding respect for the personal autonomy of people with intellectual disabilities who require more intensive support. Considerable advances can still be made, however, in enhancing personal autonomy in their daily lives.Peer Reviewe

‘I am a college student’ postsecondary education for students with intellectual disabilities

Postsecondary education for students with intellectual disabilities is almost unheard of in the Nordic countries, but several colleges in America, Australia and Europe offer such programmes. These colleges seldom offer inclusive education services; since 2007, however, the University of Iceland has offered a Vocational Diploma in inclusive settings for students with intellectual disabilities. In this article we report on qualitative research carried out in 2009–2013 among 39 graduated students with intellectual disabilities from the University of Iceland and 14 lecturers who have taught inclusive college courses. The findings suggest that, despite some reservations, there seems to be a common agreement that this initiative is an important part of improving the access of disabled people both to education and society. The courses are inclusive, that is, offered to disabled and non-disabled students at the School of Education studying at the undergraduate level. The graduated students described increased social participation, knowledge and self-esteem. The lecturers described the inclusive courses as positive both for non-disabled and disabled students. The employment outcomes for graduated students have in general been positive