Elin Ørjasæter

FOTO: Christine Heim

Elin Ørjasæters ulykkelige barndom

Elin Ørjasæter skriver fortsatt om sin ulykkelige barndom som lillesøster til en gutt med autisme. Det skribenten mangler av balanse og nyanse, tar hun igjen i stigmatisering og generalisering.

Overgeneralisering

I Morgenbladet den 22. oktober i år, fortalte Elin Ørjasæter om hvor ille det var å vokse opp med en storebror som hadde diagnosen autisme. Bror til Elin Ørjasæter var «... vill, farlig og uhåndterlig. I hvert fall for meg, som var syv år yngre.»

Til Dagbladet uttalte hun den 14, mars 2011 at «Jeg tror nesten at enhver familie med et hjerneskadet barn er en ødelagt familie. Dette er barn som gjør upassende ting, som lukter fordi de ikke klarer å vaske seg, som sliter deg ut, og ofte vil du bare falle sammen i gråt. Jeg tror hele den mytedannelsen om våre små søsken og alt det våset der, har gjort børen mye tyngre, ikke minst for søsken.»

I Aftenposten beskrives det å være søsken til barn med autisme som «Ukontrollerte slag, spark, lugging, biting hører til dagens orden. Det er hyling og selvskading til alle døgnets tider. Det normale barnet i familien låser seg gjerne inn på rommet for å få fred og være fysisk trygg.

I tillegg til den vedvarende fysiske faren disse barna befinner seg i, er det også mentalt hardt for dem å se foreldrenes slit.

Mange utviklingshemmede autister har et forstyrret søvnmønster, og dessuten noen aparte vaner, som å smøre avføring ut over seg selv og inventaret hver gang de har mulighet. De må altså passes hvert sekund.»

Elin Ørjasæter beskriver en oppvekst med en bror som viste et rimelig ekstremt tilfelle av oppførsel som ofte kalles for krevende utfordrende atferd. Utbredelsen av krevende utfordrende atferd blant barn med utviklingshemning i Norge, synes å være 2,1%. Hvor utbredt slik oppførsel er blant barn uten utviklingshemning, kjenner jeg ikke til. Men uansett, er slik oppførsel ikke noe som karakteriserer gruppen av barn med utviklingshemning.

Følger Elin Ørjasæter med i tiden?

Elin Ørjasæter har åpenbart mange uheldige erfaringer fra sin oppvekst sammen med Dag Tore fra 1960- og tidlig på 1970-tallet. Hun glemmer at dette er lenge siden og at oppførselen hun viser til er rimelig uvanlig.

Den som leser Boka om Dag Tore, vil få innblikk i Tordis Ørjasæters anstrengelser for å sikre et tilbud til sin sønn. Selv om foreldrene til Elin Ørjasæter ikke i tilstrekkelig grad lyktes, så skal vi være forsiktige med å legge skylden på foreldrene eller Dag Tore.

Hadde Dag Tore blitt født i dag, ville han fått barnehageplass og spesialpedagogisk hjelp i førskolealder. I 1975 ble skillet mellom de opplæringsdyktige og de ikke opplæringsdyktige ble opphevet. Alle fikk rett til grunnskoleopplæring. Sykhusloven av 1969 la grunnlaget for HVPU som ble dannet i 1970 og ga fylkeskommunen et samlet ansvar for planlegging, oppfølging og drift av helseinstitusjoner. Nedleggelsen av HVPU medførte etableringen av omsorgstjenestene, blant annet med tjenester i hjemmet, støttekontakt, avlastningsboliger og barneboliger. Mye har skjedd siden Dag Tores og Elins barndom.

 

Selektiv kildebruk og skumlesing

Til støtte for sine beskrivelser, benytter Elin Ørjasæter artikkelen Siblings' Experiences of Having a Brother or Sister With Autism and Mental Retardation: A Case Study of 14 Siblings From Five Families.  Artikkelen beskriver fem svenske familier som ikke lenger maktet å ha sitt 11-12 år gamle barn med funksjonsnedsettelser boende hjemme. Artikkelen refereres heller dårlig av Ørjasæter. Konklusjonen er motsatt av Ørjasæters: Familiene hadde behov for langt mer bistand i hjemmet, spesielt pedagogisk bistand i forhold til atferdsproblemer og oppfølging av søsknene, slik de kunne fått råd og støtte.

 

I november 2013, publiserte tidsskriftet Journal of Applied Research in Intelectual Disabilities kunnskapsoppsummeringen Families supporting a child with intellectual or developmental disabilities. The current state of knowledge. Her konkluderes det med at søsken har liten eller ingen risiko for psykososiale problemer.

 

Den norske rapporten Som alle andre? Søsken til barn og unge med funksjonsnedsettelser av Jan Tøssebro, Patrick Kermit, Christian Wendelborg og Anna Kittelsaa, viser at det er spesielt å være søsken til barn med funksjonsnedsettelser. Søsken til barn med funksjonsnedsettelser får oftere mer ansvar og flere oppgaver enn andre. Mange har opplevelser hvor de blir flaue av sin bror eller søster med funksjonsnedsettelse. Foreldrene har hatt mye å gjøre og har ofte slitt i forhold til tjenester og hjelpeapparat. Mer kan nevnes, men ikke noe kommer i klassen av Elin Ørjasæters erfaringer.

En oversikt over Norske arbeider om situasjonen til søsken, kan en finne på nettsidene til NAKU

 

Barn på institusjon i Norge

I Norge er det 233 barn som bor i barnebolig. Det er 1429 barn i avlastningsinstitusjoner, mens 5888 barn er avlastning utenom institusjon (se NOU 2016: 17, avsnitt 10.3.3.2).

Det er grunn til å forvente at antallet barn i institusjoner vil øke dramatisk. I sommer kom en dom fra Høyesterett som sier at avlastere, under visse vilkår, skal betraktes som ansatte. Dommen vil kunne gjøre det umulig å være avlaster f.eks. i to døgn fordi ingen har lov til å jobbe i 48 timer.

Ensidig argumentasjon

Barnekonvensjonens artikkel 19 forplikter myndighetene å iverksette tiltak for å sikre "... barn mot alle former for fysisk eller psykisk vold, skade eller misbruk, vanskjøtsel eller forsømmelig behandling, mishandling eller utnytting, herunder seksuelt misbruk, mens en eller begge foreldre, verge(r) eller eventuell annen person har omsorgen for barnet". Forholdene som Elin Ørjasæter beskriver fra sin barndom, er beskrivelser av forhold som er ulovlige i dag.

På den annen side, sier barnekonvensjonens innledning "at barn bør vokse opp i et familiemiljø, i en atmosfære av glede, kjærlighet og forståelse for å sikre full og harmonisk utvikling av deres personlighet". Dette gjelder alle barn, også barn med utviklingshemning.

Skal en forsøke å etterleve konvensjonen og det etiske grunnlaget som konvensjonen bygger på, må en  bistå familien, slik at alle barna i størst mulig grad kan ta del i familien.

På samme måte som søster har krav på trygghet og beskyttelse mot vold, har broren en rett til oppvekst i familien.

Hvordan en legger til rette for familien, vil variere med familiens muligheter, preferanser og utfordringer. Institusjoner skal ikke være permanente bosteder og institusjoner regnes ikke som en tilfredsstillende oppvekstarena.

Hovedutfordringen

Mange vil nok føle Elin Ørjasæters ordbruk, kategoriske og generaliserende påstander om mennesker med utviklingshemning som krenkende. Men slikt glemmes raskt i våre dager. Verre er det at myndighetene ikke har foretatt seg noe for å sikre at barn skal slippe å måtte tilbringe sin oppvekst på institusjon.

Jens Petter Gitlesen

25 oktober 2016

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