In late December, inspired by Adrian Piper, I made a card to help communicate to people what was going on with me. Actually, I made two, but I have only printed one. One says “I HAVE CANCER / DO YOU MIND / GIVING UP YOUR SEAT / THANK YOU.” That one is for the difficulty of trying to get a seat on a crowded train – because I *look* fine on first impression. Closer inspection indicates otherwise…
The other one says “I HAVE CANCER / THESE ARE SIDE EFFECTS OF THE DRUGS / THIS IS NOT AN ATTEMPT TO START CONVERSATION / TALKING ABOUT THE SYMPTOMS MAKES THEM WORSE.” This is for when I am having a dysesthesia attack, and am scratching and writhing about. People stare at me, which makes it worse. Or they get up and move to the other side of the bus or train. This will maybe make them realize I am not dangerous, crazy, contagious, and/or a terrorist (LOL).
For the most part, I try to ride the subway on off peak hours. I’ve had to take the subway in for a few 9AM appointments and meetings, and things get crazy.
What is interesting, is that so far the “give up your seat” card has not worked at all. If anything it has been a hinderance. I think people think I am trying to collect alms from my poetry or something. People don’t even look at me, or they just stare.
The only good thing is that it alleviates the famous Stanley Milgram effect where the person asking experiences huge anxiety.
So far one younger Latino man got up for me. One white man didn’t but when the woman next to him got up he got up too and they both stood. Since then I have had three white men shake their heads at me. I thought I would as men because they are tougher or something. But they seem to largely be unsympathetic assholes. Which is the reputation of the NYC male.
When they say no I repeat to them my situation. It just goes right through them. Today I looked this williamsburg dude in the face after he said no twice and called him heartless and selfish. Maybe I need a different card to give out. One for people who say no. That lists all of my symptoms. How long my treatment goes on for. My prognosis. Etc. About how I may look sound but I’m not. I am a grandma inside. Weak, tired, carrying more drugs, ice packs, and healthcare paraphanalia in my bag than clothes or books.
This city is heartless.
AN UPDATE:
6 weeks later, I have given up on the card. It is a nice little bit of poetry, but people think I am trying to beg for money. I have developed a new strategy. It is two part: 1. avoid taking the train when there isn’t going to be a seat on it. 2. quickly identify the youngest person who is not asleep, and who is not listening to their iPod and ask them. The other thing I have started to do is to say “I am sick” first. Then “I have cancer, it is hard for me to stand for long periods, can I please have your seat.”
This has had a pretty high success rate. Often people seem resentful, but they do it. I said it all to one dude, and he gruffly responded “whaddayawantmetodoaboutit?” And this glammed out black chick standing up next to him with crazy hair wearing a remarkable fur coat and heels immediately said “he needs to sit. get up and let him sit.” and he did it. resentfully.
The hardest part, actually, is getting on trains that are so cramped during rush hour that I can’t even make my way to find someone who I could ask to get up. I barely make it through those rides. But I make it, and I’m proud of that.
And then there was the time that I had just negotiated for a seat. It was right next to the door. And this woman got on and stood in front of me. My face was right at her belly level, and I noticed she was just starting to show a pregnancy. After maybe 15 seconds she said “can i have your seat, or i’m going to be sick.” I looked at her, confused, regrouped, stood up, and said “you may have my seat, but you should know that I am probably the only person on this train who is more sick than you.” I went and stood in the corner. That sounds really passive aggressive, but that wasn’t how it came out. It was more of an exasperation with entitlement, and the Milgram effect — even though I had sought out and negotiated for that seat, I was still willing to give it up immediately when asked.