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Taking care of ourselves and being revolutionary: Perspectives on International Disability Activism

Written by Freyja Haraldsdóttir

Presented at: Perspectives on International Disability Activism Across Intersections

Friday 17 August 2018, Boston, Massachusetts, Northeastern University School of Law


I want to begin by thanking Lydia X. Z. Brown and all the other organizers of this pre-conference for their work and contribution so we can all have this important discussion on activism, disability justice and intersectionality. My name is Freyja Haraldsdóttir and I am one of the founders of Tabú, a feminist disability movement, a PhD student and a lecturer and researcher at the University of Iceland. It’s an honour to participate.

What I want to focus on today is our experience of intersectional disability activism in Iceland as well as my fear of the rising exhaustion and burn out in my community of social justice work and activism. I will draw from my own experience and of course a collective discussions we have had in Tabú and a wider space in activism in Iceland. I believe it’s important to acknowledge that I’m in ways speaking from a place of privilege as a white, straight, cis-gendered, middle class, physically disabled woman.

Embla Guðrúnar Ágústsdóttir, a queer feminist disability activist and a scholar, and I founded Tabú in March 2014 after we had worked with the independent living movement in Iceland for quite some time. When we left our jobs there we had, among other disabled folks, achieved great change in relation to personal assistance services in Iceland and user-control but still so many things were ahead and the process was slow. We were exhausted. Not just from doing the work but from dealing with systems of power within our community and beyond. Male domination among (disabled) men was challenging and the resistance we felt towards tackling gender based and queer disability work was difficult. A long side this we were becoming more involved in feminist and queer activism but also felt exclusion on many levels; ableist views, access issues and a narrow approach to tackling activism around e.g. violence, just to name a few. It was like we had to decide each day, or at particular meetings and conferences, whether we were women, disabled or queer. Also, I for myself felt I was taking it ‘to far’ talking about sexism alongside ableism. Couldn’t I just be happy?  At least just take a single-issue approach?

I can never fully paint this picture in an 8 minute talk, it’s to messy, complicated and emotional, but in short this led us to start building a platform where feminist intersectional disability activism could take place. It started with a Facebook page and a blog but very fast it became known and often referenced in public media discussions in Iceland. We were very conscious that it would take a long time for things to get moving. Now, four years later, we are a group of thirty disabled persons who have published over hundred articles, organized protests and workshops, participated in intersectional activism with other minority groups, influenced policies, regulations, law reforms and practice and become very well recognized in Iceland. It is partly the beauty of living in a small country where news travels fast and process can in some way come quickly. It is also an outcome of extremely hard work and emotional labour, mostly done by and for disabled women.

But. There’s always the but. Creating and holding this space does not come without challenge, as we all know. Our biggest obstacles, to name a few, have been lack of resources and lack of bridge builders.

Tabú is a non-profit platform and does not get any state funding like many other more established disability organizations that are not run by disabled people. Our financial resources are therefore restricted and we only get funding on irregular basis and have to put a lot of energy into application processes in that era. That energy we don’t always have. We don’t have accommodations so we have been in various spaces where we are offered to host events. We are also at our homes a lot sitting at our kitchen tables – trying to change the world. This is, even though sometimes very warm and cozy, troubling because accessibility varies between homes and people do not all have opportunities to offer their homes. The disabled activists almost all have to do all their work voluntarily and along side studies, work or daily life that can often be tricky. Since we are a small country the disability community is small and often we end up being very few who carry the main weight of the work. The majority of disabled people live in small-scale institutions or do not have support to participate in activism which makes the group even smaller. We have been doing a lot of activism and organizing through social media, which can be powerful and more accessible for some, but the rise of hate speech and violence on social media and in other spaces is also becoming a huge factor and being barrier in activism in Iceland. Many of us who have been outspoken about social justice across the margins, the feminist killjoys, as Sara Ahmed calls them, have been threatened, violated against and traumatized by the hate we are put up against leading to burnout, anxiety, depression and PTSD, etc. Therefore, partly, we are losing extraordinary human beings from activism and social justice work. To be honest, this worries me and I truly hope this is a discussion we can take together, in solidarity, in our care and love for our fellow activists, for more sustainable activism.

About building bridges. At first Tabú was for cis-gendered and transgender women only. We of course saw that we could not carry on like that since it excludes gender queer folks but it took us time to find our way in that direction. We tried working with people of all genders but we soon saw that straight cis-gendered disabled men brought in complicated power dynamics into the picture. We have worked in collaboration with the queer community in several projects that has always been meaningful and influential. But we can feel that homophobia and transphobia is pretty evident in our circles e.g. disabled people show up much less when we are hosting events with the queer community. It’s a constant reminder how far we still have to go and how few are ready to support the bridge building between us.

But building the bridges across intersections is essential. I believe that activism can only truly do justice if done intersectional. Anyone left out and we are all screwed. We need each other. Every voice matters. But in my view that also means that we need to take care of ourselves. Hold people of power accountable for degrading our work or destroying it. We also need to find ways to change the world by working together across the margins but in a way that we respect our wellbeing and in a way we can survive. As Audre Lorde reminded us beautifully; taking care of ourselves is self-preservation, an act of political warfare. To some extent we can say that many people don’t want us, disabled human beings, to survive. So in surviving by taking care of ourselves we are being revolutionary. We are protesting. We are doing the work. Making progress.


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