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.