Bringing disabled women together, mobilising
and sharing through lived experiences

[Screaming:]

IS THERE A​NYBODY HERE WHO IS NOT DISABLED, ILL, PREGNANT, OR FOR ANOTHER REASON NEEDS TO SIT DOWN, AND WOULDN’T MIND TO GIVE UP THEIR SEAT? THANK YOU.

By the time the train gets to my station, there are normally no seats left. Often I need to sit down to save energy to get to work and, well, work. When I go to town to work, I go to university to teach. Teaching is a profession as well as a performance: you give it your 200% in a compressed amount of time, having half of your energy simply won’t cut it.

Apart from this swollen and somewhat bruised eye right now, people assess me as a healthy, young, white, heterosexual, middle classed and generally privileged woman. True. Except that I’m not healthy (well, nor young or straight). Apart from the moments I am so utterly exhausted it looks like my eyes will pop out, puke on someone’s lap, or faint if I stand any longer on my feet, —none which normally will happen as I try to wait till I get off the train to crash or return the contents of my intestines to the world—, people feel no inclination whatsoever to stand up for me. Hell, unless someone is pregnant, looks like their eyes pop out, they faint or puke on my lap, are old and deserved their seat-stickers, walk with a cane, look like they’ve been doing some hard physical work all day, I just want to sit and read my book with Arial 20. Just because I’ve the energy levels of a snail on weed, doesn’t mean I’m a saint!

I have an invisible disability. I am invisibly disabled.

I sometimes compare the status of “being invisibly disabled” with that of having a femme identity. I identify as a femme dyke, even though I left my stiletto heels at home, because, arthritis. In your eyes, though, I’m probably the average straight chick on the panel. The queer politics, lesbian coming out hurdles and the drama of my ever-search for The Right Butch in my attempts to adhere to 2016’s dyke normativity of gay marriage aside, ultimately being a femme dyke provides me fun –whether visible to you or not. Dresses and snogging hot women and so forth.

Truth is, not so much with my health shit. Sure, having a bit of vertigo now and then gives The Butch a reason to hold me tight and protect me from an unbalanced world. I’m emancipated like that and know when to take advantage of my disabilities. But, really – not really.

According to the social model of disability, my participation in society would be equal with the priority seats and the “Look at my face, you can’t see it but I’m disabled”-pass. I don’t have a pass that proves that I’m disabled. If you can’t see it in my face, how do you know I’m disabled? If you don’t know that I’m disabled – am I disabled?

Every time that I enter the carriage, do not find an empty seat, then scream out loud in the hope that someone, always a man, stands up for me feeling gentlemanly, saving the ill and maybe even contributing to Justice, I go through an identity crisis. Yes, afraid that no one will stand up and I’ve to use spoons I don’t have in reserve, but also ashamed and guilty because, having grown up in a society where you simply man up your illness, endure your shit, because “normal is crazy enough”, somewhere in me I don’t believe I am sufficiently ill. That I am allowed to identify as disabled. That I am allowed to force others to take responsibility for their abled privilege. Coming out as disabled, I make a difference visible; where you stand up so I can sit down.

Rationally, I think that after 13ys of a variation of chronic health shit I’ve earned my stripes. But if I’m disabled, but you can’t see it, how do you know you’re abled …when you look just like me? And when you look just like me, how can I be disabled?

Because you have a bit of a headache. And your feet hurt after a day work. And you can’t remember everything. And you’re tired a bit. And without glasses you can’t see shit. And when you drink too much coffee your stomach is upset. And when you’re in a pub, your friend needs to scream for you to hear it. So, you know what it is like.

And if you know what it is like, then you know my experience. And if you know my experience, you can judge me. So if you’re not disabled, and didn’t you know what it was like?, then I’m not disabled.

Despite the promises of the social model, it is my busy relation with the NHS, the cocktail of drugs I take, the compilation of chronic illnesses, symptoms and side effects I live with, and the continuous rollercoastery adjustments to reality, desires and hopes, that contribute to what I so eloquently have categorised as Health Shit. Coming out as disabled doesn’t change much about the invisibility of my disabilities and experiences. You standing up to offer me your seat doesn’t end my identity crisis, eliminate assessing looks, or possibly solve the normativity of abledness, but, hell, it does give me a break.

Presentation by Dieuwertje Dyi Huijg for the panel “Coming out as disabled: Body Image, labels and denial of disability”, Women of the World Festival 12/3/ 2016.