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Trump, fötlunarfyrirlitning og hættuleg stjórnmál

Demonstrators
UNITED STATES – JULY 25: Demonstrators gather in the atrium of Hart Building to protest the Senate’s health care bill on July 25, 2017. (Photo By Tom Williams/CQ Roll Call)

Í umræðu um Trump (ó)stjórnina í Bandaríkjunum í tengslum við mannréttindi og réttlæti heyrum við mest megnis um áhrif hennar á konur, hinsegin fólk, svart fólk og fólk á flótta. Um þá hópa eigum við að heyra og taka grafalvarlega. Það er þó einn hópur sem gleymist nánast alveg í almennri umræðu, eða nær ekki flugi, líkt og svo oft áður: fatlað fólk. Fyrirlitning Trump á jaðarsettum hópum og konum undanskilur ekki fatlað fólk.

Ég viðurkenni fúslega að ég hef ekki verið ötul við að minna á hvernig þróun vestrænna stjórnmála í átt að íhaldssemi, einangrunar- og þjóðernishyggju, nýfrjálshyggju, rasisma o.fl. hefur áhrif á líf fatlaðs fólks. Að sumu leiti forðast ég að horfast í augu við það og sniðgeng gjarnan fréttir þess efnis, einfaldlega til þess að halda glórunni og geðheilsunni réttu megin við línuna. Það eru líka forréttindi mín sem spila þar inn í; ég er með viðeigandi aðstoð, ég hef aðgengilegt þak yfir höfuðið, stunda háskólanám og er í vinnu. Ég finn þetta samt á eigin skinni, sem fötluð kona, og í gegnum vini mína, fötluð systkini víða um heim og samverkafólk. Við erum logandi hrædd – ekki síst fólkið sem býr við beinan ótta af því að Donald Trump er forseti þeirra. En það heyrist ekki hátt og því stórefast ég um að þegar Mike Pence kom hingað í síðustu viku hafi Katrín Jakobsdóttir og Guðni Th. Jóhannsson minnst einu orði á það við Pence hvernig hann og hans skoðanasystkini eru að terrorisera fatlað fólk í Bandaríkjunum. Skoðum það aðeins:

Hatursorðræða og smánun

Trump var ekki búinn að vera forseti lengi þegar hann hæddist opinberlega að fatlaðri blaðakonu með orðum, hljóði og látbragði. Hann lýsti því jafnframt yfir að það væri „erfitt að horfa upp á“ fatlað íþróttafólk á Ólympíuleikunum. Afreksíþróttafólk á leikvöngum!! En það er, því miður, ekki það versta.

Stofnanavæðing

Áætlun Trumpstjórnarinnar dregur úr því að fatlað og aldrað fólk geti búið við öryggi heima hjá sér með þeim afleiðingum að það hverfur aftur inn á sólarhringsstofnanir – sem við sem hópur höfum með blóði, svita og tárum barist gegn í áratugi víða um heim. Skerðingar í trygginga- og bótakerfinu gerir það að verkum að fatlað fólk getur síður fengið notendastýrða persónulega aðstoð (NPA), sérhæfða hjúkrunarþjónustu heim til sín, niðurgreidd lyf og hjálpartæk sem útilokar sjálfstætt líf.

Frekari útilokun frá vinnumarkaði

Skerðing á þjónustu (t.d. NPA) og niðurgreiddum hjálpartækjum og lyfjum ýtir ekki einungis undir stofnanavæðingu heldur dregur enn frekar úr möguleikum fatlaðs fólks til atvinnuþátttöku. Jafnframt dregur það úr atvinnumöguleikum aðstandenda sem þurfa þá frekar að vera heima við til þess að aðstoða fatlaða fjölskyldumeðlimi. Það þarf líklega ekki að taka það fram að slíkt mun og hefur alltaf haft mestu áhrifin á konur. Trump hefur jafnframt staðið í veginum fyrir því að lágmarkslaun verði hækkuð og heldur því fram að þau séu of há. Þá hefur Trumpstjórnin hótað að skera niður þegar að kemur að innviðum eins og félagslegu húsnæði og matarstuðningi. Í þessu samhengi má benda á að fatlað fólk er í sérstökum áhættuhópi þegar kemur að fátækt.

Einkavæðing skólakerfisins

Trump hefur lagt áherslu á að foreldrar fái aðgangsmiða fyrir börnin sín í skóla svo þeir geti valið hvaða skóla börnin fara í. Þetta gerir það að verkum að fólk velur í auknum mæli einkaskóla sem oftar eru undanskildir kröfum um að tryggja réttindi fatlaðra nemenda. Þetta gerir það að verkum að skólar geta hafnað nemendum ef þeir vilja ekki mæta þörfum þeirra og foreldrar þurfa því jafnvel að flakka úr skóla í skóla með fötluð börn sín svo þau fái þá menntun sem þau eiga lögformlega rétt á.

Réttarstaða

Trumpstjórnin hefur jafnframt grafið undan stuðningi við fólk sem þarf réttindagæslu og aðgengi að réttarkerfinu – sem er mjög oft fatlað fólk. Þá hefur einnig verið skorið niður í fjárveitingum til samtaka sem vinna að réttindabaráttu jaðarsettra hópa. Þá hafa dómarar í auknum mæli farið að túlka lög, t.d. lög um bann við mismunun á grundvelli fötlunar, mjög þröngt í nafni mikilvægi þess að halda uppi „aga“ og „siðmenningu“.

 

Þessi atriði eru auðvitað ekki tæmandi heldur einungis innsýn í gegnum skráargat inn í þau áhrif sem Trump og hans pólitík hefur og mun hafa á fatlað fólk. Ég las nýverið kraftmikla bók, Resistance and Hope: Essays by Disabled People, sem er ritstýrð af Alice Wong, sérfræðingi í stafrænu efni, fötlunaraktivista og ráðgjafa. Bókin samanstendur af reynslusögum fatlaðs fólks af því að lifa undir stjórn Trump og hve mikilvægt er að halda í vonina og andófið til þess að halda sönsum, koma í veg fyrir skaða og halda áfram að vera í sókn í réttindabaráttu. Það hefur fatlað fólk svo sannarlega gert. Eins og Wong segir:

Resistance and Hope: Essays by Disabled People is a powerful collection of essays by disabled writers, artists, activists, and dreamers. What is the relationship between resistance and hope? What can disabled people share with the world during this time of uncertainty and unrest? You will learn from a wide range of perspectives from multiply marginalized disabled people on where we are right now, where we’ve been, and where we’re going. Share this anthology with everyone everywhere—on social media, in the classroom, at the kitchen table, with your friends and neighbors.

Í þessu samhengi er mikilvægt að muna er að réttarstaða fatlaðs fólks (sem sumt er konur, hinsegin, svart og á flótta) hefur aldrei verið góð alþjóðlega. Einnig að vandinn býr ekki í Trump sem slíkum heldur uppgangi hugmyndafræði og valdakerfa sem hann stendur fyrir. Ísland er til dæmis með flest niðrum sig þegar kemur að réttarstöðu fatlaðs fólks; þjónusta er almennt ekki til þess fallin að draga úr stofnannavistun, vinnumarkaðurinn vill sem minnst með fatlað fólk hafa, aðgreining er mikil í skólakerfinu og birtist í mörgum myndum og réttarstaða okkar er ekki góð. Semsagt: Trump er víða. Maysoon Zayid er einn höfundur bókarinnar Resistance and Hope: Essays by Disabled People. Hún er leikkona, skemmtikraftur, rithöfundur og fötlunaraktivisti. Hún er afdráttarlaus um Trump og alvarleika þess sem hann stendur fyrir.

I have been reprimanded for comparing Trump to Hitler and his supporters to Nazis. To this I say if it quacks like a Nazi, goose steps like a Nazi, and hates like a Nazi, we probably shouldn’t ignore these “very fine people.” Hollywood stars, cable news commentators, and perturbed parents were horrified when The Donald mocked New York Times reporter Serge Kovaleski’s disability. Many declared it was the worst thing Don had ever done. I wish it was. He has documentably done far worse in the past and the worst is yet to come.

Þess vegna, þrátt fyrir regnbogaarmbönd, hinsegin fána og hvítar draktir (sem ég kann að meta), þurfum við að standa vörð um sigrana og vera óhrædd við að æða áfram með auknar kröfur um bætta stöðu og betra líf fatlaðs fólks og annarra jaðarsettra hópa. Það gerum við ekki með því að bjóða hingað velkomið fólk eins og Mike Pence, sem er boðberi haturs og ófriðar, og gefa honum vettvang til þess að breiða út fagnaðarerindi sitt umkringdur leyniskittum og herflugvélum. Það er ekki tilviljun að nasistahreyfingin/ar hafi fengið hugrekki til þess að taka sér pláss með beinum hætti í Reykjavík um leið.  Það er beinlínis hættulegt og við erum hrædd enda eigum við, sem hópar, sögu af kerfisbundinni útrýmingu og ofbeldi. Það lifir að sumu leiti enn þó birtingarmyndirnar séu mögulega aðrar.

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Kæru foreldrar

Ég sat í góðra vina hópi fyrir nokkrum vikum síðan og horfði á fólk streyma fram hjá í göngu tileinkaðri stolti, réttlæti og frelsi – Reykjavík Pride. Ég var þakklát og meir á þessum degi eins og svo oft áður enda mér mikilvægt að öll getum við verið við sjálf – óafsakandi. Skammt frá mér var lítill strákur, líklega um fimm ára, sem gjóaði augunum að mér en reyndi að láta litið fyrir því fara. Ég þóttist ekki taka eftir því og hugsaði litið um það enda vön að líkami minn og tilvera veki forvitni barna.

Eftir nokkurn tíma heyrði ég að drengurinn var farinn að koma forvitni sinni í orð og gleyma sér við að virða mig gaumgæfilega fyrir sér; ,,Er hún lasin?” spurði hann fullorðnu manneskjuna sem var með honum. Fullorðna manneskjan hunsaði spurninguna svo drengurinn hækkaði róminn og spurði án afláts; ,,ER HÚN LASIN?!?!” Það var mikill hávaði og mannfjöldi í kringum okkur svo ég var ekki fær um að ná tali af drengnum en brosti bara til hans. Almennt hika ég ekki við fara og tala við börn sem ég heyri að eru að spyrja um mig enda finnst mér þægilegra að stýra því hvaða upplýsingar þau fá um minn líkama og líf. Sú fullorðna hélt áfram að hunsa barnið vandræðalega en sussaði hvasst á hann að lokum, skipaði honum að hætta að horfa á mig og snéri höfðinu á honum að göngunni; ,,Ekki vera að horfa á hana, horfðu á gönguna!” skipaði hún. Drengurinn þagnaði en hélt áfram að gjóa augunum að mér.

Þetta er ekki í fyrsta sinn sem viðbrögð fullorðins fólks við forvitni og fróðleiksfýsni barna svekkja mig. Blessunarlega hefur atvikum sem þessum fækkað og foreldrar og aðrir fullorðnir eru farnir að vera rólegri í þessum aðstæðum, svara börnum af yfirvegun eða leyfa þeim einfaldlega að ræða málin við mig. Sem ég kann að meta. Að mörgu leiti skil ég óöryggi og vandræðagang enda getur vissulega verið pínlegt þegar barn hrópar yfir hálfa Bónusverslun að líkamsverund manneskju sé óhefðbundin, snúi sér úr hálslið í glápatrennu eða spyrji óviðeigandi spurninga. Ég hef alveg verið þeim megin við borðið. Ég mun aldrei gleyma því þegar yngsti bróðir minn, þá tveggja ára, sá svarta manneskju í fyrsta skipti og sagði ,,vá!” og ,,hæ!” látlaust í fimm mínútur á meðan hann gekk á eftir viðkomandi. Mig langaði smá að tækla hann og fjarlægja hann af vettvangi tafarlaust. Ég hélt aftur að mér.

En hvað getum við gert? Hvernig finnum við jafnvægið í því að gefa börnum rými til þess að rannsaka og fræðast um heiminn en á sama tíma kenna þeim að virða mörk og einkalíf annarra? Hér eru nokkrar tillögur:

Verum róleg

Börn eru sjaldnast að reyna að særa fatlað fólk eða gera lítið úr okkur. Þau eru heldur ekki að reyna að gera út af við foreldra sína eða aðra fullorðna. Ef við verðum reið erum við að senda skilaboð um að þau séu að gera eitthvað rangt. Það er ekki raunin. Spurningunni að ofan er til dæmis hægt að svara; ,,Nei, ég held hún sé ekki lasin. Hún er fötluð/hún notar hjólastól í staðin fyrir að labba.“

Völdum ekki ótta eða skömm

Flestum okkar hefur verið kennt að það sé dónalegt að glápa á annað fólk enda er það oftast mjög óþægilegt fyrir þann sem er viðfang gláps. Það er hinsvegar eitt að vera fullorðin og glápa á fólk sem okkur finnst skrítið eða forvitnilegt en annað að vera barn sem er ennþá að reyna að átta sig á heiminum og margbreytileika hans. Með því að skamma börn erum við að smána þau fyrir að einlæglega vilja læra og gefa þeim skilaboð um að ákveðnir hópar fólks séu hættulegir/óæskilegir/vafasamir. Við drenginn hefði fullorðna manneskjan geta sagt; ,,já, þarna er kona, hún er að horfa á gönguna eins og þú.” Búið.

 Viðurkennum vanþekkingu

Fullorðið fólk þarf ekki að vita allt. Það er að mínu mati hollt fyrir börn að skilja að líkt og þau sjálf erum við sem erum fullorðin ávallt að læra. Það getur valdið meiri skaða að bulla eitthvað um fatlað fólk í stað þess að segja bara hin einföldu fjögur orð; ,,Ég veit það ekki”.  

Kennum börnum að fatlað fólk þekkir líf sitt best en á rétt á einkalífi

Stundum er hægt að hvetja börn til þess að spyrja fötluðu manneskjuna sjálfa um það sem þau eru að velta fyrir sér. Með auknum aldri og þroska barna er þó mikilvægt að útskýra fyrir þeim að allir eiga rétt á sínu einkalífi og að ókunnugir hafi ekki rétt á að vita ýmsa hluti um hagi annarra. Sjálf hef ég leiðbeint börnum sem hafa náð nægum þroska um að fá samþykki fyrir spurningum sínum. Þau skilja það oftast vel og tileinka sér það. Ég hef sjálf ekki samþykkt að svara öllum spurningum barna og þau virða mörkin mín almennt mun betur en fullorðnir.

Sumt má bíða og annað má leiðrétta

Stundum er ekki staður og stund fyrir vangaveltur barna (og fullorðinna). Við sem erum fullorðin erum annars hugar, ekki með svör á reiðum höndum eða einfaldlega klúðrum einhverjum útskýringum eða förum með rangt mál. Þegar ég lendi í slíku sjálf með börnum segi ég þeim einfaldlega að ég muni ræða betur við þau síðar. Það er ekki alltaf vinsælt en þau komast í gegnum það. Flóknar umræður eða leiðréttingar finnst mér oft gott að ræða í meira næði, t.d. í bílnum á leiðinni heim, yfir kvöldmatnum, í gegnum leik eða fyrir svefninn.

Reynum að ýta ekki undir staðalmyndir

Fatlað fólk hefur verið sjúkdómsvætt í gegnum söguna, ásamt því að okkur er gjarnan stillt upp sem fórnarlömbum fötlunar okkar. Flest fatlað fólk er ekki veikt (frekar en ófatlað fólk) og við erum almennt sátt við lífið og tilveruna. Við eigum góða og slæma daga eins og allir aðrir en oftast er erfiðast að takast á við meðaumkun og aðra fordóma. Börn eru ekki undanskilin þessum hugmyndum og því skiptir máli að tala um þær við þau og hjálpa þeim að aflæra þær sem fyrst. Það er í raun oftast svo einfalt að benda þeim á hvað við eigum sameiginlegt (t.d. „já, þarna er kona að versla í matinn/fara í sund/þvo bílinn sinn eins og við“) og hvað það er mikilvægt og gaman að við séum öll ólík (t.d. „ég held hún sé nú ekkert leið, sjáðu hvað hún á flottan hjólastól!“).

 

Ekkert af ofangreindu eru geimvísindi og líklegt er að við sem erum fötluð höfum ólíkar skoðanir á þessu sem og öðru. En ég skynja hinsvegar að flest okkar viljum frekar taka samtöl við börn frekar en að þau séu smánuð fyrir að sýna okkur áhuga. Það sem mér fannst sérstaklega erfitt við atvikið á Pride var að þar vorum við saman komin til þess að draga fram margbreytileikan, fagna honum og sýna virðingu og ást. Á meðan drengurinn var beinlínis hvattur til þess að fylgjast með atriðum göngunnar, eðlilega, var minn margbreytileiki óþægilegur. Mín líkamsverund varð að viðfangi skammar og einhvers sem átti bara að geyma í skugganum og þögninni. Þar vil ég ekki vera. Þar á fatlað fólk ekki heima.

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Access to international mobility in higher education for disabled people

11006416_1568554993387191_7041882240633067427_nPresented at a seminar on Student mobility and disability in the Nordic countries – Reykjavik – 16.11.18

Dear audience,

It’s a pleasure and privilege to be here today to talk about disabled students’ opportunities in the area of international mobility in higher education. My name is Freyja Haraldsdóttir and I’m an adjunct in the Department of Education in the University of Iceland, a PhD student and a feminist disability activist. Today I want to share my experience as a disabled student studying abroad, discuss some recommendations for change and finally stress why access to international mobility in higher education is essential for disabled students.

Personal experience

The year 2015 I went, together with my friend Embla, who is also disabled, as an exchange student for 7 months to Manchester Metropolitan University in England while working on my MA degree in gender studies. Overall, my experience was positive, and with support from the international office at the University of Iceland, and Erasmus+ and Manchester Metropolitan University, most of the barriers were sorted out. I got additional funding through Erasmus+ that was absolutely necessary to make this happen. But. There’s always the but.

First of all it is important to address my privilege. I’m one of the very few disabled persons in Iceland whom receives individual budgets for personal assistance services but I need 24h assistance. Without that kind of services I would not have been able to go – I think I can state that. Also, I have been able work alongside my studies so financially I was more stable then many disabled people who have to rely on the benefit system in Iceland. I was also able to have support from my family to some extent. In addition to this Embla and I, whom had support from each other in this process, are both experienced travellers, speak fluent English and are very much used to dealing with complicated systems of oppression and ‘computer says no’ scenarios. Also, we have network of friends in Manchester that was very welcoming and supportive. This is not something that we can be sure of in disabled students lives.

What I found personally to be lacking was someone, one person, who could follow me through this process en hold on to all the loose ends, instead of me needing to run between different offices and people to keep things a flout. I did not get any formal support in finding accessible accommodations, which I think was one of the biggest stressful parts. Embla and I found an apartment for rent three days before we left Manchester and we were not 100% sure it would be accessible. It turned out to be ok-ish but for 7 months I had to walk to university a few times a week to take a shower. I did it, and it was worth it, but it is a ridiculous situation to be in.

Access to international mobility in higher education for disabled people

I believe, as with anything else, disabled students access to international mobility in higher education, needs to be approached and thought about, in context with other areas of our lives. First of all, disabled students need to know that they can study abroad and that they will be supported in their process, both financially and practically. Also, disabled students who have studied abroad need to be representing student mobility programs and recruited for work in this area. This is important so disabled students have role models and can seek advice and guidance from someone who has similar experiences and therefore different insight and knowledge than nondisabled people. I was 18 years old when I first heard of a disabled person studying abroad and it was the first time I thought about being able to do that to. We may never forget that disabled people have been taught to settle for less and are not often trusted to make their decisions. To resist that is hard and we are all responsible in doing so.

I do believe that the cornerstones of disabled people’s independent living philosophy can be beneficial in mapping some of the issues that need to be addressed. I have mentioned the peer support, then there personal assistance and support if needed. Do the students have access to that in the first plays? Can they keep their support while studying in other countries? If not, how do we secure the support needed? Then we have housing. Disabled students need to have access to housing that meets their needs and is situated in places that are reachable and possibly located centrally. The housing often needs space for personal assistance. We also need to think of public transport and access to transport services. In Iceland I use my own car because both transport services and public transport is inaccessible. I was not able to take my car so accessible public transport was essential. The cost of transferring mobility aid (e.g. wheelchairs, beds) from one country to another or renting mobility aid needs to be covered. Also, in addition to this, I think it is of utter importance that student mobility programs make sure that disabled students have the opportunity to have a contact person, staff or student (or both), both in the university at home and in the new country, to hinder complications and isolation. Finally, in relation to health care, disabled students need to be supported in making connections, e.g. doctors and physiotherapists, if needed in the new country. People with long term illness and/or disabilities often have long and complicated stories and are afraid of using the health care system, even in their own country.

In more general terms student mobility programs need to be flexible and offer various ways of studying abroad, short or long term. We need to be mindful of the history of oppression in disabled people’s lives and the cost of it for our empowerment and wellbeing. I believe we also need to acknowledge intersectional structures of oppression and be aware that disability is not a single issue struggle. Disability does not exist in a vacuum but is interrelated to gender, class, sexuality, gender identity and expression, race and other identities that can in one way or another influence the opportunities of disabled people to study abroad. Disability is not a one size fits all category and there are also disability related hierarchies. People with visible and invisible impairment will not in all aspects experience barriers and prejudice the same way. The same goes for people with different impairments or multiple impairments. We need to think about the diversity of the group and be aware that certain groups, e.g. people with learning disabilities, will most likely be subjected to higher degrees of oppression and discrimination in higher education, than people with physical impairments. While advocating for international student mobility this is something we may never forget.

The feeling of control and empowerment

We know from research and history that disabled people have not had equal opportunities when it comes to education and the labor market. The CRPD therefore stresses the importance of securing the right to education on all levels, as well as access to participation on the open labor market. Being able to study abroad is hence an important investment in the process of disability justice. Moving to another country and experiencing new academic environment widens people’s horizon, disabled or not, and offers greater opportunities for growth. It can also be beneficial for further studies and job opportunities. It’s also a time where we often expend our social networks and build new relationships.

Finally, on a more personal note. Studying abroad for me was one of the most important thing I have ever done. The planning and organising was challenging but it was worth every second. The seven months I spent in England were liberating because I had space and time to just think about my own work and take care of myself which is not an easy task for a disability activist. It was also extremely empowering because a few years earlier, due to internalised ableism, I had not believed I could do this, and also because stepping outside your comfort zone, if that even exists for disabled people, fuels your self confidence, gives you a feeling of control over your own life and a sense of self worth and autonomy.

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Home

Some thoughts I presented yesterday (with slight changes) at the event Street view // Reassembled // Round Table Discussion at the Reykjavík Art Festival where a group of diverse people talked about the concept of home.

When I sat down to think about the concept of home it came apparent to me that maybe that is the essence of the disability rights movement. Not only as a concept of a house or a building or a shelter to live but as a sense of belonging and being included in society. To feel like home in your own community but not as a guest or a burden or a misfit.

But I want to focus on something else today and that is the use and abuse of the term home for disabled people in Iceland. Disabled people have fought against institutionalization for years. The institutions that many of us are forced to live in represent themselves differently, some are large scale and very segregated but others are small, like group homes, and are situated out in the community but still hold the culture of institutionalization. In these institutions, big and small, disabled people are stripped of the rights to choose where they live, with whom, who assists them – let alone when they take a shower, what they cook for dinner and when they go to bed. The support we receive in these institutions is mostly bound to the buildings so if you wanted to go somewhere and need support you very rarely have the freedom to do so. We can not choose to have partners or lovers or children when we live in institutions. Usually not even a pet. But do the authorities call these places institutions? No. They call it a home. Why? Because it sounds better and covers up the truth. Makes them feel less guilty about the human rights violations they are responsible for. To fight against institutionalization, around the globe, disabled people have fought for personal assistance based on the philosophy of independent living.

But there are political and governmental contradictions appearing at the moment. Last week the District Court of Reykjavik ruled that I, a well educated and highly experienced disabled woman, was not fit to become a foster parent because, among other discriminatory reasons, my home is, according to them, an institution where children should not be placed. It’s apperantly a institution because I have personal assistants working for me 24/7 who assist me in every aspect of life. At the same time the child protection system in Iceland runs actual institutions where they place children in need of a home, both longterm and while they wait for families. The waiting list is long, especially for teenagers.

This is obviously in my view outrageous because the fact that I have personal assistance has prevented me from being institutionalised. Having personal assistants gives me the freedom and opportunity to live independently and with dignity, to work and to study, participate in politics, enjoy art, leisure and culture, travel the world and cherish my friends and family on equal terms. Truth be told, if I wouldn’t have personal assistance, I would not have a home that I could build, shape and self-identify so I can feel safe and empowered alone or with a family.

This tactic is In my view a abuse of power. Not only do disabled people have to fight every day to reclaim their identity that has been stigmatised and dehumanised but also the discourse of our homes. It is therefore important that when we think about the concept of home we are aware of the importance of who gets to define it, when and where. That a home is a place of the freedom to choose and a place which you define for yourself. A place where you have a say. A place that you can feel safety and privacy with and without assistance. A place that you create in a way that meets your needs and the needs of the people you love.

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Losing my case in the District Court of Reykjavík – but not losing my story

On the 6th of June I lost my case against the Government Agency for Child Protection in the District Court of Reykjavik. The court ruled that the Government Agency for Child Protection had followed all the right procedures in my application process and that I had not been discriminated against.

According to Icelandic regulations you are supposed go through further assessment by the Government Agency for Child Protection and taking a course called Foster Pride when the local authorities have accepted your application (which they did in my case). The further assessment process was denied in before hand and my application was denied on the grounds that my health is assumed not to be good enough, that due to my disability I would not be able to secure a strong attachment with a child and that my home is like an institution because I have personal assistance. This has now been confirmed by The District Court of Reykjavík.

I’m still processing the outcome while being completely exhausted and of course in a lot of pain. I have four weeks to decide whether I should take the case to higher levels of the courts. I’m thinking it through and looking at my options.

This was an extremely sad day for justice in Iceland. A sad day for disabled people. A sad day for disabled women. A sad day for disabled parents. A sad day for foster children and of course for myself. In a country where the CRPD has been signed and ratified, a country that is known for it’s strong feminist grounds and a country that could in so many ways be in a leading role of disability justice, it’s mortifying that it does not have the guts to respect and act on the right of disabled women to a due process on all levels and protect us from being judged solely on how our bodies move around, look and live. It is also outrageous that a few weeks after the Icelandic Parliament legalizes personal assistance for disabled people the district court of Reykjavík decides that a parent who is a user of those services is unable to provide a child stability and develop a bond with a child. And this is done without any proof whatsoever.

Even though I’m shattered I refuse to take the shame of the court system in Iceland. The story about me and other disabled women they are trying to tell is invalid. This is and will not be our story. I sincerely hope that disabled women and disabled mothers in Iceland, and elsewhere, can gather energy to resist this misrepresentation and reclaim our strong and powerful stories. I also hope that the disability community, feminist and queer movements will show solidarity. Because we need each other.

Dear friends and comrades all over the world. Thank you for your support and solidarity, advise and kindness. It’s meaningful beyond words.

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A brief note for English speaking friends about the primary treatment of my foster parent court case

On the 30th of June 2014 I applied to become a foster parent. It was a windy but sunny day – a bit similar to how I was feeling. Excited but anxious because of my awareness of the ableist and sexist deeply rooted traditional perceptions around disabled motherhood.

A long story short. A year later I was accepted by my local authorities. According to Icelandic regulations you are supposed go through further assessment by the Government Agency for Child Protection and taking a course called Foster Pride when the local authorities have accepted your application. In my case this was denied in before hand and my application was denied on the grounds that my health is assumed not to be good enough, that due to my disability I would not be able to secure a strong attachment with a child and that my home is like an institution because I have personal assistance. I appealed their decision in 2016 to the Ministry of Welfare but they also approved the decision of the Government Agency for Child Protection. I therefore had no choice but to take this to court.

On Friday, the 20th of April, the primary treatment took place in the District Court of Reykjavík. It was a very trying day but together with my two powerhouses of attorneys and the extraordinary solidarity of my friends, family and fellow feminist disability activists it was as successful as possible and a day to remember. Now we have 4-8 weeks of wait until the court ruling.

So many of you have supported and encouraged me the last four years with your insight, knowledge and experience. Thank you for believing in me. First and foremost, to all the disabled parents out there, whom I know and don’t; thank you for creating a space of empowerment and solidarity – thank you for clearing the pathway. Now we hope for the best.

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I survived (ableist eugenic medicine)

A blog based on a Facebook post 28th of July 2017.

This video is for many reasons troubling. It represents Kaden, a boy, as a hero because he is disabled and as a sufferer from his ‘disease’. Seeing this discourse on disability is exhausting because it’s stigmatising for him and other disabled children. It is also an unrealistic representation of children’s lives.

It is, in despite of the shortcomings, an important video for various reasons. Kaden has the same impairment as I have, osteogenesis imperfecta (OI). His parents were told that he had only a 5% survival rate for coming alive into this world. Now, nor am I a doctor or very interested in my impairment. I have, though, gone to conferences, read a bunch of stuff, in particular material on pregnancy and child birth for mothers with OI, and gotten to know a lot of people with OI, but I have never seen anything (except in the drama show Greys Anatomy) about low survival rates for babies with OI. I know some of them might need breathing aids and also some of us as we become adults. But that doesn’t mean life is over, obviously. I have never heard anything other than children with OI survive pregnancy and birth and overall have meaningful and beautiful lives. Of course, our bones can fracture very frequently, with the pain that comes with it and challenging times, but I still haven’t met a person willing to sacrifice their life because of it.

Kaden’s parents were told that he had a 5% chance of surviving. I’m going to allow myself to say that it is highly likely that it is utter nonsense. They were encouraged to abort him. They were not ready to do so and that’s why he exists. He likes superheroes, playing on the swings, computer games, building legos and then he often fractures his bones. He has parents who love him and believe in him and his future. He has a good life.

His parents could have listened to the doctors and aborted him. They could have been affected by the dominant representations and discourse of disability as a personal tragedy, defect and a burden for society – and because of that decided that his life wasn’t worth living. Not because they are cruel, but because sometimes modern medicine is cruel. A part of eugenics. But they didn’t. That’s why Kaden exists. That’s why he has a life.

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Me, a few months old, smiling in a bath tub, with my black hair all over the place.

It’s strange to think about my life being at stake, like Kaden’s, if my parents had known about my impairment; the innovations of my genes. They could’ve been in Kaden’s parent’s shoes. But the technic was different and so were the ethical views in medicine (to some extent). I survived. They survived. That’s why I exist. That’s why I have a life.

I deeply want to know how our health care system in Iceland, which has the power to produce knowledge for parents who are expecting a child, define and explain OI. How many children with OI have been aborted? How many children has Icelandic society missed out on? Because the statistics tell me that it doesn’t make sense that I’m the only one with my type of OI in Iceland. We should be at least around three (after I was born). But I’m the only one.

The thought of it scares me. And causes me much more pain than all my fractures together. They are around 200. It would be great if the gatekeepers of the health care system, who decide whether we are born or not, would be informed about that.