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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