A rare way of being

I don’t like the word disease. But that’s the label the doctors gave me when I was born. They say it is a serious and rare disease – brittle bones disease. I have never felt sick even though my bones break easily and my body is shaped rarely. It has always just been my way of being. I have also never understood the seriousness of the structure of my bones and body. It’s what it is. What is hard to deny, and I have no reason to, is the fact that it is rare.

But is that serious? For me, no, it is not. What’s serious is that because of my way of being I am marginalised by dis/ableism (and sexism). The structure of my environment does not recognise me and often it is not accessible. The structure of politics is for and by non disabled people (cis men) so laws and policies don’t recognise me which leads to exclusion when it comes to health care, social services, education, the labour market, housing and politics itself. The structure of people’s minds are shaped by stereotypical representation of people who are labelled disabled or chronically ill reinforced by well-meaning but ableist organization who ‘support’ people with disempowering videos like this one. So those minds define me without recognising me. I’m the object of their pity party and inspirational porn.

Fracturing bones often is complicated, slows me down, causes physical pain (a lot of it) and affects my state of mind. I get frustrated and exhausted and my self-esteem sometimes becomes lower. But I get frustrated, exhausted and have lowered self-esteem by so many other things, like the Rare disease day video and website (that tell people to give us a hug … for reals!). It is dehumanising and makes me sick, to be honest.

The pain from broken bones is difficult but it is a part of my life like prejudice and exclusion. In many ways I find it easier to tackle the physical pain then the emotional pain of stigma. People understand that broken bones hurt but they don’t understand why a kind-hearted Rare disease day video does. People show empathy and patience when I am exhausted or quick tempered because of physical pain but not when I feel the same from stigmatizing comments, stares or lack of access. I also know the physical pain will most likely leave eventually (even though it can come again) but emotional pain from marginalization is often constant and mundane. Normalized. I have not often experienced people telling me to stop being emotional or upset about broken bones but they don’t hesitate to say that when I get hurt by ableist language. Finally, I know many (socially accepted) ways to numb physical pain but I often don’t know how to lessen the pain from watching videos and websites like the above mentioned.

Finally, having a ‘rare disease’ has not robbed me of anything at all. Discrimination has taken care of that. The rareness has offered me a life where I can define myself as a disabled woman and be apart of disability feminist communities that I truly care about. It has led me to activism and education in the fields of gender studies and disability studies. It has also brought me to a community of people with the same rareness that changed my life and pushed me to take roads where I have met my closest friends. Also, it has helped me see that even though body politics can be cruel, it is in many ways empowering to have a rare, and therefor a exciting, body that no one but myself truly knows and understands.


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