Category Archives: disabilty

Invisible Disabilities: Standing Up for What Can’t Be Seen


Debbie says:

[Laurie and I will be spending the next week at WisCon 40 in Madison. We’ll be back in June.]


May is Ehlers-Danlos Syndrome (EDS) Awareness month.  Until now, I’ve been only vaguely aware of Ehlers-Danlos, maybe a little more familiar with the word “hypermobility,” which I now know is a type of EDS. However, aforalpha’s open letter to the women who gave up their seats on the bus, guest post on Shakesville, will be carved into my memory for a long time:

Yes, at the time I thanked you for the seat.

But see, because you stood up, I was able to work a full day. I was able to sit in a conference room. Give a presentation.

Because you stood, I didn’t have to hold the grab bar. And when I arrived at class, I still had enough hand and wrist strength left to unzip my own coat.

Because you stood, I was able to run errands this evening. I was able to stop by the pharmacy, finally. Tonight I will take my anti-nausea meds for the first time in several days and I will sleep without a bucket beside my bed. …

Every time I don’t need to stand on the bus it saves me that little bit of wear and tear. You wouldn’t think it would matter, but I once spent an extremely tedious and painful occupational therapy session relearning how to press the buttons on the microwave. Everything matters.

aforalpha goes on to describe EDS, a disease with a vast range of presentations, and more about how it affects them personally.

Along with teaching me more about EDS, and helping me put a personal face on the syndrome, the post made me think about seats on public transit, which are a factor in my everyday life.

Since my hair turned gray about four years ago, people routinely offer me seats on the BART and the bus. I don’t need them. I not only don’t need them the way aforalpha needs them (desperately), I don’t even need them mildly. I like having a seat. I’m more comfortable, and I get more reading done. But it doesn’t make an iota of difference to how my day goes. I suspect almost everyone likes having a seat.

I often say no, but sometimes, if the person is insistent, or my feet are tired, or the train car/bus is super-crowded, I say yes. If someone asks for a seat, as aforalpha did, I’m always ready to give mine up. I just hope that the people who need seats in invisible ways are asking. aforalpha, and anyone else who needs it, my seat is yours if you want it. And when I get to the point where I do need a seat, your courage will help me ask.

Body Oppression Teach-In/Santa Rosa, California

Debbie says

On Monday, November 16, at 7:00 p.m., Laurie and I will be the featured speakers at a body oppression teach-in sponsored by Occupy Sonoma County. If you are anywhere near Santa Rosa, California, please join us at the Peace and Justice Center of Sonoma County,  467 Sebastopol Avenue. (Donation requested.)

Here’s an (unpublished) article I wrote to offer some context for the teach-in:

nude from Women En Large

Perhaps the only thing that all human beings have in common is that each and every one of us lives in a body. Until the bioengineers figure out a way to upload our brains into the cloud, that’s going to stay true.

So what is “body oppression”?

If you are treated less well than other people because of something about your body, that’s body oppression. If a store detective follows you around because your skin is darker, and/or you are younger, that’s body oppression. If you can’t get into a building because your wheelchair doesn’t climb stairs, that’s body oppression. If your doctor makes assumptions about your health based on your size, that’s body oppression. And if you learn to shame yourself because of the body you live in, that’s internalized body oppression.

In other words, body oppression is everywhere. Almost all of us know what it feels like to be oppressed because of our bodies, and most of us know what it feels like to internalize that oppression and blame ourselves.

Resistance to body oppression is both individual and collective, both private and organized; however it forms, it always relies on each of us learning to accept our own bodies, live in our own skin. The cosmetics manufacturers and the beauty corporations have co-opted this message into “Love Your Body,” but Laurie and I are working towards something much richer, more complex, and more powerful than a smooth skin campaign.

nude from Familiar Men

Working with Laurie’s stunning black-and-white photographic images of bodies – fat female bodies, male bodies, bodies of women who live in Japan – and with accompanying text which encourages the viewer not to trivialize those images. We don’t want the portraits of fat women to be simplified to “yes, those bodies were beautiful in another time,” so we provide text that demonstrates her as powerful in the tradition of fat liberation.

Resisting body oppression as an individual isn’t (necessarily) about loving your body; that’s great if it happens. It’s about the right to look in the mirror and see what you see, not what the world tells you to see. It’s about making the invisible visible.

Michelle, who blogs as The Fat Nutritionist, said it perfectly:

We need to be allowed to see ourselves as human, at any size, and to see ourselves represented alongside other humans. We need to be able to share our images in public, if we want, and push the recognition of our humanity. Mostly, we need to be allowed to have images of ourselves imbedded in our brains, alongside everyone else. When we see nothing but images of people who don’t look like us celebrated and represented by our own culture, little by little, it degrades our sense of being human. It is a form of systemic emotional abuse.

 Resisting body oppression collectively is about working together, about learning to notice who is being oppressed and who is oppressing, about fighting back, about demanding that every single one of us is treated respectfully and fairly. Over the last few decades, body image activists working together have changed the kinds of clothes that are available, the quality of medical information, the laws about seat belt extenders on airplanes, and much more. There’s so much more to change that sometimes we forget how far we’ve come.

Building collective resistance can only be done by adding more and more individuals to the group. The one thing that makes the invisible visible better than a photograph is a living, breathing person. Each victim of body oppression (fat, dark-skinned, disabled, or any or all of the above) who asserts their right to live fully is a harbinger of the world we all want to live in. Each ally who supports us is a bulwark of the effort.

Come talk with us at the teach-in. Uploading into the cloud isn’t happening any time soon; as long as we all have bodies, let’s learn to live in them well and to fight for what we deserve.