Access to international mobility in higher education for disabled people

Presented 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.

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.

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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.

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.

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.

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.

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.

‘Do you call that a wheelchair?’: crip traveling and the wrongful disabled body

I love traveling. Seeing new places, getting to know people and experiencing different cultures. It gives me a sense of freedom and peace that I can not experience elsewhere. It is the only thing that recharges my batteries in a way that I can actually feel the difference and puts my mind at ease from my often fast paced (wonderful) life. I seem to be able to leave most tasks and worries behind and decide to deal with them when I return home. Also, I very often travel for conferences and other work related issues and it is important for me, as a feminist disability activist, to connect with others who are experiencing, working on or exploring similar issues. It pushes me further and gives me energy. I know I’m privileged to be able to travel. I can afford it (to some extent), I have a passport, a working wheelchair and personal assistance. Those things should probably not count as privileges but we live in a world where it is for disabled people and many other marginalized people.

It is though not without effort, emotional labor and physical pain. As a disabled woman who owns a body that is not standard in many ways I experience loads of barriers and discrimination while traveling. Each time I go abroad I know that the trip I am taking will not be easy and very possibly difficult. I have not written about this before but after my recent trip to the UK I think it’s time to give my experiences a voice for others to hear. Not because it was my hardest trip so far or because the UK is particularly inaccessible. I just realized it was time.

I travelled to London, Liverpool and Loughborough and in all these places the hotels I booked were not fully accessible despite defining themselves as such. They were both cheap and expensive ones so that didn’t seem to matter. In two of the rooms I had to have furniture removed from the because otherwise I could not transfer from my wheelchair to the bed and vice versa. In one of the rooms I had to get out of my wheelchair in the hallway. All the three bathrooms were very tight and it was a mission almost impossible to take a shower. There was never room for my assistant so they always had to squeeze themselves back and forth while assisting me and I could forget to be able to dry and dress in the bathroom. Also, getting into one of the bathrooms required going up a steep threshold-ramp-kind-of-thing in a very narrow corridor and in another bathroom the floor of the shower leaned towards the door so there was a human lake made while I showered. Showering was because of this stressful and exhausting so I took few showers and often felt ashamed of that. When I can not shower it really disempowers me. Two of these hotels forgot to put me in an accessible room even though it was required in my booking. What all of these hotels had in common was that their definition of access was at best only based on a stereotypical physically impaired person who does use a small manual wheelchair and requires no assistance from another person, a hoist etc.

Public transport was another thing. Countless times taxi drivers or staff at train stations were shocked by my existence. They over and over again said that my wheelchair wouldn’t fit in the car/train and talked to my assistants (of course not me) like they had never touched my wheelchair or didn’t know me at all. They make all kind of drama about my wheelchair being to big or long or strange or different and take their time believing that it actually is a wheelchair. One staff member called my wheelchair a ‘vehicle’ while another asked very irritated; ‘do you call that a wheelchair?’. It doesn’t matter if I tell them i have travelled a million times before, they are sure they know better, and should off course set my ridiculous ideas about my wheelchair and body straight. I, obviously, know nothing. I also travel with another wheelchair and some suitcases and each time there is someone pointing out to me or my assistants that we have a lot of luggage (like we, who packed those bags and travelled with them across countries, hadn’t noticed). This luggage, that seems to overwhelm every other human being, is usually seen as problematic. I’m shamed each time for taking up space I obviously don’t deserve. A space not meant for my disabled body and everything that comes with it. I was even prohibited to take my luggage to the underground from central London to the airport because of it’s greatness. Instead one of my assistants had to take a taxi with the chair and suitcases which was about ten times more expensive than the metro. 

In addition, while many people defend themselves with ‘just being concerned with my safety’ when commenting or controlling how I travel I’m never safe anyway. In the trains, metro and taxis there are no straps for my wheelchair but that doesn’t bother anyone (except myself, who has very fragile bones and who had a serious car accident last year and is therefore slightly terrified in cars since). My safety only matters when it puts somebody’s job or some companies insurance at stake.

I could mention so many things. But this will do for now. I think the reasons I got so frustrated this time are two, first and foremost. The recent years I have put a whole lot of work into radically celebrating and respecting my body. Because I have succeeded in that act I am more aware of when my body is stripped of dignity, safety, agency, privacy and respect. It makes me more angry when I am shamed for lying down, needing assistance, having the wrong kind of disabled body or taking up much space. Because I should not be shamed. It’s just my body. Existing. That should not feel like committing a crime. The other reason is that I had just experienced loss of a loved friend. I’m therefore grieving and more vulnerable to the violence of the systems and cultures around me. Which reminds me again of the demand from society not to be human. I’m always supposed to be up for it; the battles from where I’m lying. Battles that you usually can’t choose.

It’s not enough to offer disabled people false tickets to enter a society if it’s only on non disabled people’s terms. Or in some limiting spaces. I know traveling can be tiring for anyone. But that’s not what I am talking about. Disabled people should not be exhausted from plainly being who we are. It’s our world too, and we have the right to travel it, while being safe and keeping our dignity. 

Disabled bodies: the objects of medical professionals … when of interest and personal gain?

Throughout history, in most places of the world, disabled people have been the objects of medical professionals, e.g. doctors, psychologists and physiotherapists. Our bodies (including the mind …. because the mind is a part of the body … I know, it’s shocking!) have been observed, ‘fixed’, aborted, killed, operated on and so forth, mostly for the benefit of societies that find it inconvenient to celebrate and respect our bodies. We are told that this is all done for our own health, life quality and opportunities in society. Therefore, we are meant to be thankful and generous. Many of us are raised by messages that medical professionals have a right to stare at us, poke at us, observe us without clothes on and hurt us (in the name of therapy or a treatment). In these circumstances it is hard not become powerless, afraid and incapable of setting boundaries. We can start to internalise the ableism in the health care system, which of course is usually interrelated to sexism, classism and racism, and either develop unconditional trust towards this system or no trust what so ever.

But what is so interesting, but actually more infuriating, is that this extreme interest of medical professionals in disabled bodies, is actually very limiting. As children our disabled bodies seem to be interesting because they might become non-disabled or less disabled. Everyone and their mothers want to ‘have a go’ at ‘fixing’ our assumed brokenness and they put a lot of effort in it (often with the cost of life long trauma for disabled people). If they ‘succeed’ they become heroes in the medical world and they take photos of our bodies and show them of at conferences or in medical journals. But when they don’t succeed at all or enough we stop being interesting. Because there is no benefit for them, anymore. In some cases we, as disabled people, become relieved because the pressure and the pain decreases. But sometimes this lack of interest turns into maltreatment. Some of us might experience bodily changes in adulthood and want it checked out but nobody is interested and nothing is done. Sometimes we become sick but nobody cares because we are ‘disabled anyway’. In other cases we might be going through changes in our lives or have accidents and injuries but we are just left to deal with it, because ‘there is no cure anyway’. Our bodies are seen as broken and therefore it is not worth it to ensure their wellbeing or healing.

Why am I writing about this now? As a disability activist and a person who, alongside other disabled women, runs a feminist disability movement, creates saver spaces and run workshops for the empowerment of disabled women, I’m constantly hearing stories of dismissed (female) disabled bodies in the health care system. Yes, of course I hear stories of brilliant doctors and therapists, but unfortunately not often enough. I hear of women who go to psychologists who don’t listen to them and decide all their troubles are because of their disabilities (but not oppression, loosing a job, experiencing violence or a break up). I hear of women who see gynaecologists who send them straight home because they assume they are not having sex and therefore there is no need of a check up. I hear of women in excruciating pain who are assumed to be imagining it because it is not visible. I myself, have over and over again, gone to doctors because of longterm nausea or fever and nobody sees it as anything special (until a few weeks later when I come in with a massive infection or with a kidney which has become double in size). A friend of mine recently contacted a doctor because of changes in their impairment and after waiting for two weeks the doctor replied with an e-mail saying something like; ‘I am really busy with paperwork, I don’t know anything about this and have never heard of anything like this, nor do I know any other doctor who does. Goodbye.’ There were no suggestions of other professionals or an offer to get it checked out. Nothing.

This is happening while we know that disabled women rate their health lower then disabled men and nondisabled women. This is happening while we know that the premature death rate of disabled people is much higher than for nondisabled people. This is happening while we know that diseases like cancer are being diagnosed much later than for nondisabled people. What happens is that disabled people stop seeing the point in seeking health care or become too afraid or anxious to even think about it. It also makes it very difficult, while working with and for disabled women, to suggest that they get checked out or see someone for help. Because doing so can be dehumanizing and traumatizing in itself and there is a great responsibility in advising someone to possibly go through that.

This has to stop. Disabled people do not exist for health care professionals as objects of their success stories or medical career. Our bodies do not exist only when they can be fixed or cured. Our health is not only important when it is beneficial or interesting to others. Because if it is, and it often is, our lives are in danger. Our disabled bodies exist as they are. We exist for ourselves. Our bodies are ours to own and claim and therefore we have the right to ask for medical help and treatment when needed and to be taken seriously. All. The. Time.

A letter to Donald Trump (that he will never read and it doesn’t matter)

I tried not to think about it much what would happen if you became president of the United States. Because I became to afraid for people I care about in your country and minorities that you have shown amounts of hate that I wasn’t sure did exist in a developed country – like yours. But if I thought about it I wondered how I would react if you became president. I was sure I’d feel terrified and furious.

When I woke up this morning in Iceland, after a night of disruptive sleep and nightmares, most likely thanks to you, I saw that the nightmares were nothing compared to my reality. You are president of one of the most powerful nations in the world. A world I live in.

But to my surprise I was not angry or terrified. I felt similar to when a natural disaster strikes the world, where people are injured and killed, and homes are destroyed. I felt loss. But I also felt overwhelmingly focused. The way I attend to feel when there is sudden chaos, everything is out of place and I have no other choice than to stay calm and start working my way through the mess. I felt like jumping out of bed, getting dressed, transferring into my wheelchair, getting out of my house and straight to work. I felt the same urge to help as I feel when there is a disaster. And as I thought more about it; you are a disaster. What has just happened is a human disaster. Most likely people will get injured and killed and homes will be destroyed. Because of you.

But I’ve decided I am going to try as hard as I can, not to become afraid and full of hate towards you. You are not worth it. It is going to be hard and I am going to fail sometimes, because I am human being, with zero tolerance towards people like you. It is easier for me than your fellow citizens. I’m not one of your sexual assault victims that now have to look at you and listen to you on the media as their president. Like the election period wasn’t enough. I’m not the parent who has to explain to their disabled child why the president of their country mocks disabled people as a tool in their political battles. I’m not the immigrant who is now afraid for his safety in his home because of the president. I’m not walking in the shoos of all the other people who you have disrespected, frightened, dehumanized and traumatized through the elections. I am aware of that.

Instead I have decided to do everything in my power to be nothing like you and do all the things you despise. I’ll do that by keep building up, among other disabled people, a intersectional feminist disability movement. I’ll do that by finishing my MA thesis on internalized oppression in the lives of disabled women. I’ll do that by being more loud and less silent, even if it means ruining a family Christmas gathering or spoiling the mood in a party. I’ll do that by taking up more space and appoligizing less for my existence. I’ll do that by never again regretting to talk about politics, discrimination and power structures with the children around me because it could be harmful for them. It’s not. It’s the only way for them to survive.

This will also go for my own future children. I’ll play with them, love them, feed them, nurture them, laugh with them and do my best to keep them save. But I will also talk about dead serious business with them. I will talk about you with them. I’ll talk about how your country, like mine actually, has for years sponsored wars. I will talk about slavery and other forms of violence, racism, sexism, ableism, heterosexism, and all the other isms out there. Not to make them scared or anxious but to keep them more secure and with better self-esteem. It doesn’t rob them of their childhood, it gives them better childhoods. It helps them know the difference between right and wrong. It stops them from being silent and pushes them to speak up. It gives them better tools and knowledge to be the change we want to see in the world. And when they are adults it lessens the threat of them becoming you or voting for a person like you in a position of power.

All this is not going to change the world. But if we all take responsibility you and people like you will not conquer the world. We will. Nothing else is an option. So thank you for being one more dreadful reminder of how far we still have to go. How much terror we still have to remove. How undeveloped we still are as human beings. Thank you for reminding me how hard we have to love each other across different cultures, genders, bodies and identities to counterweight your amount of hate. Because we will.

You might be powerful, but much so is the love, solidarity and ambition of marginalized groups and their allies when an important job needs to be done.

Frelsið mitt er frelsið þitt: hugleiðing á Kvennafrídaginn

Ég hugsaði með mér í morgun; ,,Freyja, þú tjáir þig ekki um þetta. Ekki alltaf vera þessi (baráttu)gleði spillir. Ekki vera slæmur femínisti.” Í allan dag er ég búin að feika fram brosið og reyna að vera til friðs á meðan inn í mér ólgar eitthvað sem ég veit að verður að komast út. Annars get ég ekki sofnað. Annars fer þessi ólga inn á við og meiðir mig áfram. Það er ekki gott. Áður en lengra er haldið skal það tekið fram að kynbundinn launamunur gerir mig brjálaða á svo marga vegu að ég gæti öskrað mig hása um það sólarhringum saman. Ég þoli ekki að eitthvað tiltekið kyngervi eða kynvitund geri það að verkum að innkoma fólks sé minni þrátt fyrir sama menntunarstig, vinnuframlag og reynslu. Ég þoli heldur ekki að við séum ekki bara búin að græja þetta mál. Hvað er svona flókið? Valdakerfi samfélagsins. Það er það sem er svo flókið að það sviptir okkur valdi til þess að hafa áhrif á það. Í kaldhæðninni allri.

Og það er kannski það sem mig langar til þess að skrifa um svo ég geti sofnað. Þetta valdakerfi sem skipar fólk með ólíkum hætti á ákveðna staði. Í dag hættu sumar konur fyrr í vinnunni til þess að mótmæla kynbundnum launamun. Það er mikilvægt og góðra gjalda vert. Á sama tíma voru þó aðrar konur sem komust ekki fyrr úr vinnunni vegna þess að án þeirra starfa væru mannréttindi annarra kvenna brotin. Ég gat til dæmis ekki gefið aðstoðarkonu minni frí vegna þess að þá hefði eftir einhvern tíma ég verið komin í hættu nema einhver hefði leyst hana af. Það vakti í dag upp draugana mína sem láta mig reglulega vita að ég megi ekki gleyma því að ég sé byrði. Mér finnst óþægilegt að fá aðstoð frá körlum við persónulega hluti svo afleysingin hefði þurft að vera veitt af annarri konu. Til dæmis mömmu minni.

Tölum aðeins um mömmu. Áður en ég fékk notendastýrða persónulega aðstoð vann mamma mín launalaust í 21 ár við það að aðstoða mig nánast allan sólarhringinn fyrir valdakerfi sem stöðugt bregst. Það bregst með því að veita mér ekki almennilega aðstoð frá barnæsku svo ég geti öðlast stigvaxandi sjálfstæði og frelsi eins og aðrar stúlkur og konur. Það bregst með því að setja mömmu mína í þá stöðu að þurfa að leggja menntun sína og önnur hugðarefni að mestu til hliðar til þess að skapa mér manneskjuleg lífsskilyrði. Nú verður hún mögulega reið við mig fyrir það að segja þetta því aldrei nokkurn tímann lét hún mig finna að það væri vandamál fyrir sig. Það var nú samt þannig oft, vegna þess að ég vissi hvað framlag hennar var mikið, að mér fannst ég vera byrði. Á sama tíma, ef hún leyfði sér að fara til útlanda eða vinna í blómabúð af og til, var hún með sektarkennd yfir mér. Af því að hún vissi auðvitað betur en flestir hversu mikið ég þurfti á henni að halda. Það þarf auðvitað ekki að taka það fram að þegar hún var ekki til staðar, sérstaklega frá þeim tíma sem ég vildi bara fá aðstoð frá konum, voru það oftast ömmur, frænkur og vinkonur mínar sem leystu hana af.

Um þetta og svo miklu fleira þurfum við að hugsa um þegar við berjumst gegn launamun. Hann er ekki bara kynbundinn heldur oft samofin annars konar valdníðslu kerfa í samfélaginu sem eru eftir allt saman (karl)mannanna verk. Þessi margslungna staða er ekki konum að kenna. Hún krefst þess ekki að við eigum að hætta að ganga út á Kvennafrídaginn. En hún krefst þess að við viðurkennum jaðarsetningu ólíkra hópa kvenna og skiljum að misrétti á einum stað þrífst á misrétti á öðrum stað.

Fyrir mömmu, aðstoðarkonur mínar og allar aðrar konur sem hafa lagt mínu frelsi lið skrifa ég þessi orð. Þannig get ég vonandi lagt þeirra frelsi lið án þess að þurfa að skammast mín fyrir að þurfa á þeim að halda. Það er, þegar ég hugsa betur um það, háfemenískt mál og spillir engri baráttugleði.

Innbyrðing kúgunar og tvíeggja sverð: hugleiðingar um margþætta mismunun og Samtökin ’78

Þegar ég var barn var ég með fordóma fyrir fötluðum krökkum. Sérstaklega krökkum með þroskahömlun. Ég vissi vel að við áttum öll eitthvað sameiginlegt, aðallega af því að fólk talaði við okkur í sömu asnalegu tóntegundinni, okkur var strítt með svipuðum hætti, ferðuðumst með sömu leigubílunum og vorum, t.d. oft aðgreind í tíma og ótíma í skólanum. Ég vissi líka að við vorum ekki öll alveg eins. Stundum komst ég ekki hjá því að umgangast börn með þroskahömlun, t.d. í skólanum, í sjúkraþjálfun eða leigubílum. Mér fannst það óþægilegt af því að ég vildi ekki að fólk héldi að ég væri eins og þau. Ég fann að þau urðu fyrir meiri stimplun en ég. Það var talað við þau eins og þau vissu aldrei neitt. Það var tekið fram fyrir hendurnar á þeim alveg stöðugt. Þau voru valdbeitt og niðurlægð. Hunsuð. Þau voru álitin ófær um að læra og leika sér. Og ég var hrædd við það. Ég var að upplifa skerf af þessu sjálf og vildi alls ekki meira. Mér fannst ég stöðugt þurfa að sanna mig og var handviss um að í nærveru barna með þroskahömlun þyrfti ég að gera meira af því. Svo var það fullorðna fólkið með þroskahömlun. Það var komið alveg eins fram við þau. Svo bjuggu þau mörg saman í einhverjum húsum. Hvað ef ég yrði sett í svona hús líka? Mig dreymdi um það martraðir. Þau voru þvinguð inn í leigubíla. Stundum leið þeim illa en engin hlustaði. Það kom engin svona fram við mömmu mína og pabba. Þau voru líka fullorðin en ekki fötluð. Ég var logandi hrædd við þennan veruleika og var viss um að ef ég héldi mig eins mikið fjarri væri ég öruggari. Þess vegna harðneitaði ég öllum tilraunum foreldra minna til þess að setja mig í rými þar sem voru bara fötluð börn. Einu sinni náðu þau að plata mig á sundæfingu fyrir fatlaða krakka og þegar ég sá hvernig hópurinn var varð ég fjúkandi ill. Þarna ætlaði ég ekki að vera. Punktur.

Það sem ég áttaði mig ekki á, en hef öðlast skilning á núna sem fullorðin manneskja, var að fötluð börn með þroskahömlun voru ekki mín raunverulega ógn. Þau voru hluti af hópi sem ég tilheyri. Þau deildu með mér plássi á jaðrinum og voru jafn miklir þolendur undirskipunar, öðrunar og annars konar ofbeldis eins og ég. Bara meiri, ef eitthvað er. Þau áttu ekkert skilið þá slæmu framkomu sem þau urðu fyrir frekar en ég. Og sú slæma framkoma sem ég varð fyrir var og mun aldrei vera þeim að kenna. Skömmina á forréttindafólkið sem skilur ekki félagslega stöðu sína og beitir valdi sínu gegn okkur. Það var mín raunverulega ógn. Það var ógn okkar allra. Frelsi okkar frá þeirri ógn felst ekki í að stimpla hvert annað og óttast það að deila jaðrinum saman. Sameiginleg og ólík reynsla okkar er okkar helsta baráttutæki. Því fylgir mikið frelsi að mínu mati að geta skilgreint sig sem hluti af hópi, pólitískt og persónulega.

Jaðarsetning á jaðrinum

Síðustu árin hefur umræða um jaðarsetningu inn á jaðrinum orðið háværari og ríkari krafa er gerð um að jafnréttisbaráttan sé víkkuð út og borin sé virðing fyrir því að undirskipað fólk geti tilheyrt fleiri en einum jaðarsettum hópi. Jafnframt hefur verið bent á að innan jaðarsettra hópa sé ákveðið stigveldi sem hamli framförum fyrir hópana í heild sinni og valdi manneskjum innan þeirra skaða.

Innan feminískra hreyfinga hafa til dæmis svartar konur, fatlaðar konur og hinsegin konur gagnrýnt að reynsla þeirra sem konur sem búa við margþætta mismunun sé ekki viðurkennd og sé truflandi fyrir kynjajafnréttisbaráttuna sem lítur á kyngervi sem aðal mismununarástæðuna. Innan annarra hreyfinga, t.d. sem vinna gegn rasisma, hafa konur jafnframt gagnrýnt að reynsla þeirra sem kvenna sé ekki gjaldgeng og stuðli að sundrung innan hópsins. Þar má jafnvel ekki tala um kynjamisrétti. Sama má segja um fötlunarhreyfingar en þar er jafnframt ákveðið stigveldi sem byggir á kyngervi og tegund skerðinga. Svo dæmi séu nefnd. Hreyfihamlaðir gagnkynhneigðir sískynja karlar tróna á toppnum. Síðan koma gagnkynhneigðu sískynja konurnar. Neðar í stigveldinu koma svo manneskjur með geðraskanir og þroskahömlun, einkum konur. Neðarlega eru líka manneskjur með ósýnilegar skerðingar.

Þessi útilokun og þetta stigveldi stuðlar óhjákvæmilega að óróleika, reiði, sársauka og vantrausti innan jaðarsettra hópa. Sjálf hef ég upplifað þessa útilokun í femínískum hópum þar sem reynsla mín af fötlun er oft hunsuð og ýmislegt í uppbyggingu þeirra er útilokandi. Þrisvar í röð átti að halda viðburði fyrir kvenframbjóðendur til stjórnlagaþings og þeir voru allir óaðgengilegir fyrir fólk sem gat ekki labbað stiga. Ég var ekki velkomin. Innan fötlunarhreyfinga hef ég fundið fyrir ítrekuðu vantrausti á grundvelli kyngervis. ,,Þetta samvinnufélag væri nú mun betur sett ef karlmaður með viðskiptavit stýrði því” var sagt af valdamiklum hreyfihömluðum karli við vinkonu mína er ég var framkvæmdastýra þar og við kvenkyns samstarfskonur mínar vorum iðulega kallaðar dramadrottningar ef við lýstum áhyggjum af einhverju eða vildum að hlutir væru teknir fastari tökum. Þá höfum við verið sakaðar um sundrung, eins og svartar konur, þegar við gerum eitthvað eingöngu fyrir fatlaðar konur. Þar að auki hefur farið mikil vinna í að grafa undan stigveldinu á grundvelli ólíkra skerðinga. Mikið af hreyfihömluðu fólki vill til dæmis alls ekki vinna með fólki með þroskahömlun því það er enn fast á þeim stað sem ég var á á barnsaldri.

Síðustu mánuði hefur það ekki farið fram hjá mörgum að mikil átök eru að eiga sér stað innan Samtakana ’78. Aðild BDSM félagsins er látin líta út fyrir að eiga upptökin sem þó er ólíklegt þar sem að ólgan sem brotist hefur út er þess eðlis að hún er mun djúpstæðari en svo. Það sem er þó einkennandi, frá mínum bæjardyrum séð, er að fólk sem hefur haft mesta plássið í hinsegin baráttunni fram að þessu, t.d. hommar og lesbíur, finnst að sér vegið vegna þess að fleiri hópar skilgreina sig nú opinberlega hinsegin og gera augljóslega kröfu um að eiga rödd og hafa áhrif innan hinsegin samfélagsins og utan þess. Þarna er til dæmis um að ræða trans fólk, intersex fólk, kynsegin fólk og BDSM hneigt fólk. Valdamesta fólkinu er í raun svo ógnað að það hefur gert kröfu um grundvallarbreytingar á samtökunum til útilokunar á þessum hópum og áhrifum þeirra m.a. með því að bjóða fram lista af fólki til stjórnarsetu sem vill vinna gegn því að samtökin opni sig fyrir öllum þeim sem skilgreina sig sem hinsegin.

Ef þetta er skoðað í heildarsamhengi er rauði þráðurinn alltaf sá sami; innan jaðarsettra hópa er einnig að eiga sér stað jaðarsetning sem stuðlar að útilokun og stigveldi sem veldur skaða.

Innbyrðing kúgunar og tvíeggja sverð

Sem gagnkynhneigð sískynja kona átta ég mig á því að ég hef takmarkaðar forsendur til þess að hafa skoðun á því sem á gengur í Samtökunum ’78. Ég þekki ekki söguna nógu vel og hef ekki upplifað misrétti á grundvelli kynhneigðar, kynvitundar, kyneinkenna o.sfrv. Ég er hinsvegar fötluð kona með sjaldgæfa skerðingu sem gaf mér líkama sem passar illa inn í flest norm í tengslum við líkamlegt atgervi og kyngervi. Það þýðir að ég þekki undirskipun á eigin skinni, hef upplifað misrétti á grundvelli skerðingar minnar, þess að ég er kona og stundum á þeim grunni að skerðing mín sé ekki nógu vinsæl eða heppileg í almenna fötlunarbaráttu. Eins og ég lýsti hér að ofan hef ég einnig fundið mikið fyrir eigin forréttindastöðu innan fötlunarhreyfinga því ég er ekki með þroskahömlun og séð hvernig sumt hreyfihamlað fólk, sérstaklega karlar, þolir illa að láta bendla sig við fatlað fólk sem við höfum komið fyrir neðar í stigveldinu. Svo var ég auðvitað fordómapési sem barn eins og ég fjallaði um í upphafi þessarar greinar.

Það sem er að naga mig einna mest er hvers vegna við gerum okkur þetta. Er ekki magnað að við sem höfum orðið fyrir fordómum fordæmum annað fólk innan okkar eigin jaðarsettu hópa og þvert á þá? Er ekki skrítið að á sama tíma og við krefjumst þess að samfélagið óttist okkur ekki óttumst við hvert annað? Er ekki öfugsnúið að við gagnrýnum forréttindahópa fyrir að vilja ekki gefa eftir vald og pláss nema komi til átaka um þau en séum svo ekki tilbúin að gera nákvæmlega það sama innan okkar raða? Er heil brú í því að við sem höfum barist með kjafti og klóm fyrir að njóta þeirra mannréttinda að skilgreina okkur sjálf komum í veg fyrir að aðrir njóti þeirra mannréttinda? Er það ekki sorglegt að við notum sömu vopn og forrettindahópar hafa notað til þess að meiða okkur til þess að meiða hvert annað?

Það er skrítið og að mörgu leiti óskiljanlegt. Á sama tíma held ég að ég átti mig á, og við mörg, hvaðan þetta kemur. Líf okkar flestra sem erum jaðarsett hefur einkennst af stimplun, valdaleysi, skertu athafnafrelsi og brútal mannréttindabaráttu. Slíkt er ekki bara hluti af lífi okkar á stundum heldur hversdagslegur veruleiki. Við vöknum á morgnana og vitum innst inni að allar líkur eru á því að við þurfum að réttlæta tilveru okkar, eiga í litlum og stórum átökum um réttindi okkar og verja okkur gegn brennimerkingum þann daginn. Það er örmagnandi. Við förum því alls konar leiðir til þess að komast af og vernda sálina okkar og líkama fyrir sársauka. Flestar leiðirnar sem við notum eru góðra gjalda verðar. Við lærum líka hvert af öðru og leitum skjóls í sameiginlegri reynslu okkar sem við vitum samt að er fjölbreytt. Þar finnum við oft örugg rými sem valdefla og eru frelsandi. Þannig verða allir sigrarnir til og byltingarnar. Það er fallegt. Á sama tíma held ég, og reyndar sýna rannsóknir það, að stundum eru leiðirnar sem við förum vondar í þeim skilningi að við förum að meiða hvert annað. Við höfum barist svo mikið fyrir plássinu okkar, valdi og frelsi að við þorum ekki að deila því hvort með öðru. Við erum svo uppgefin á stimplun að við útilokum aðra hópa ef við erum hrædd um að þeir standist ekki þá ímynd sem við viljum hafa af okkur. Við erum svo upptekin af eigin afrekum, sem við höfum þurft að hafa svo mikið fyrir, að við þolum ekki að einhver segi að takmarkinu sé ekki náð. Og svona mætti lengi telja.

En er það nógu góð afsökun? Höfum við rétt á því að skaða aðra af því að við höfum orðið fyrir skaða? Er það réttlætanlegt að við notum sverðið sem við vorum stungin með til þess að stinga aðra? Nei. Það finnst mér ekki. Við höfum rétt á því að vera reið, sorgmædd, sigursæl, hrædd og óörugg. Það á að vera í fínu lagi, og í raun mjög heilbrigt, að takast á og viðurkenna að mannréttindabarátta er fáránlega flókið fyrirbæri. En það á ekki að vera í lagi að stunda markvissa útilokun eða sýna ofbeldishegðun innbyrðis. Þessu tilfinningaróti þarf að finna uppbyggilegri farveg, skömminni á að skila til síns heima og reiðinni þarf að beina að samfélagsumbótum.

Það að við séum ólík og margslunginn reynsluheimur okkar passi ekki inn í gamlar baráttuaðferðir eða samræmist ekki gömlum skilgreiningum á okkur sjálfum og veruleika okkar er ekki ógn. Það er tækifæri. Vandinn felst ekki í því að við séum ólík heldur í því að við kunnum ekki að höndla það. En þá hlýtur það að vera verkefnið. Að læra það saman. Ef við erum ekki tilbúin til þess get ég ekki betur séð en að við töpum öll. Það má ekki gerast. Þess vegna mun ég, sem bandakona hinsegin fólks og fötluð kona sem er mjög annt um þróun mannréttindabaráttu á Íslandi (og í heiminum öllum) mæta á aðalfund Samtakana ’78 á morgun og kjósa með hagsmunaaðild BDSM á Íslandi og stjórn sem stendur fyrir margbreytileika og skilur það að með því að fagna honum og virða, náum við miklu fleiri sigrum og völdum miklu minni skaða á þeirri leið.