I’ve heard many people say that they find it much easier to advocate for someone else than for themselves. I’ve certainly found that to be the case. If I see something going wrong for someone else, I can step up directly on that person’s behalf without hesitation. On my own behalf, though, I tend to try to wind my way around the problem — denying it, looking for alternative solutions, trying to convince myself it’s not a big deal — until I finally can’t take it anymore and speak up.
I had an experience this week that put me in mind of a way to get past the resistance to advocating on my own behalf. I now think about advocacy as advocating for my body, rather than for myself. When I think of my body as asking me to advocate on its behalf, I find it much easier to say, “Okay, sure. I can speak right up.”
I stumbled upon this trick of the mind this past Sunday, when an online meeting that had been scheduled for 2 pm got canceled at the last minute because some of the people couldn’t make it. My body went into a neurological tailspin. The problem really wasn’t that I was inconvenienced, per se; the problem was that I had structured my entire day around the meeting in order to take care of my body. I had to save spoons in the morning just to get ready for the meeting, so I had done nothing else that morning at all. I hadn’t scheduled anything after the meeting so that I’d have time to rest. With disability in the picture, I have to make sure that any time I know that I’ll be working hard (and a meeting with other people is always working hard), I clear a lot of space around it. When I’ve done that and a meeting gets canceled, I have a hard time shifting course. It’s not because I am inflexible and impatient, but because everything in the day has been structured around the thing that didn’t happen, and my body has garnered all of its energies to prepare for the working time and the resting time on either end. It doesn’t quite know what to do when it’s been for naught.
When I found out that the meeting had been canceled, I got upset, and I realized that I needed to say something to the other people about it. I know that things come up at the last minute that can’t be helped, and I can go with that, but I needed people to know that, when it’s possible, I need more notice. I need people to remember that my body works differently from theirs, and that what looks like a two-hour meeting is a whole day affair for me.
What really surprised me about the situation was that I was not angry at the people involved at all. They are all great people and it wasn’t their fault. They didn’t know how my body works. If they had known about this particular need, I’m sure they would have factored that into the process. Instead of anger, all I saw was that my body was yelling at me to defend it. I had always mistaken that level of urgency for anger, but it isn’t. It’s my body screaming at me: “Come on, Rachel. Come on. Say something. NOW. DEFEND MY NEEDS. Help! HELP! Don’t hesitate. Act!”
It was so amazing to look at my body as though it were speaking to me. It made it so much easier to advocate on its behalf. The level of compassion I felt for myself was so much greater than what I usually feel in a situation that involves the collision of my body with the able-bodied world. I usually have a war with myself about whether it’s even worth it to speak up; I usually worry whether I will be met with resistance, anger, impatience, or ignorance. But when I was able to look at my body’s signals, I just thought, “Oh, my body is in serious distress. I need to say something about how to keep my body out of pain. Right now.”
I got an apology, which I appreciated, because I knew I’d been heard. But really, an apology wasn’t necessary, because no one had known in advance what the impact would be. The most important thing was that I was able to say, “My body works differently from yours and it is yelling at me to say something, and I am going to stand up for it.” That’s huge for me. And it’s a welcome change.
© 2013 by Rachel Cohen-Rottenberg