Disability and Representation

Changing the Cultural Conversation

Privilege at Work in the Pharmacy Line

I had an interesting moment at CVS tonight.

I walked over to the store to pick up an epi-pen. (Yesterday morning, I had my first allergic reaction to a bee sting ever, so I’ve been working on getting an epi-pen all day.) To pick up a prescription at CVS, you have to stand in a line by the pick-up counter at the back of the store. Tonight, the line consisted of an elderly white man in front of me who was holding a cane, and a younger African-American man behind me. I was standing between them with my cane as well. The elderly man in front of me was easily 80 years old and fairly unsteady on his feet. He was leaning against the shelves and looking quite tired.

As we were standing there, a young and apparently able-bodied white dude came over and asked the elderly man, “Are you in line?”

He said “Yes, I am. I’m picking up a prescription.” The young man looked at me for confirmation, and I gave him an emphatic nod — as if to say, “Why do you think we’re standing in line here? For the view at the back of the pharmacy?”

And what did he do? He cut in front of the line. He went right up to the pick-up counter for his prescription. I kid you not. I could hardly believe my eyes. Thanks be to God the woman behind the counter told him he’d have to wait his turn. When he realized that he had to stand behind the rest of us, he left.

These kinds of microaggressions are so disturbing to me. A line is one of the few democratized spaces left. You get in line and you wait your turn. And for the love of God, you do not cut in front of an elderly man who is unsteady on his feet and clearly laboring to stay standing. If I hadn’t been so tired, I’d have said, “Nice try throwing around your privilege, pal.”

I just don’t understand that level of chutzpah. I don’t think I ever will.

© 2013 by Rachel Cohen-Rottenberg


A Trick of the Mind: Advocating for My Body

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


I Wonder What They Were Thinking

Last week, I was coming home from a housecleaning job in Live Oak. I’d been working at that job once a week for the past few months, but the people were moving, and they needed me to come and do a final cleanup for them. So I went over there several times, helping them get organized and cleaning up the apartment.

Ordinarily, I’d take the bus to the job and walk the four miles home. I love walking and it’s a nice way to relax after working during the afternoon. But on Friday, I was incredibly tired and I decided to take the bus back.

When I picked up the bus at 4:45, it was crowded and all of the accessible seats were taken. Some of the people using them were clearly disabled; others did not appear disabled, but might have been. My general policy is this: Unless I see someone who is very clearly nondisabled sitting in an accessible seat — such as a young man with a skateboard — I won’t ask the person to get up. I won’t make assumptions. For all I know, a young person who doesn’t give up an accessible seat might have an invisible disability, and I’m not going to question anyone. I pretty much depend on other people’s sense of decency around this issue; if a person doesn’t need the seat, I depend on that person to get up. Often, that works out well for me. Occasionally, it doesn’t. But it’s worth it to me to not question a person as to whether they’re really disabled or not. I’ve had that happen to me too many times to want to run the risk of doing it to someone else.

So I went to the back of the bus, where the aisle is narrower. I had a pull cart with me that had a few very light things in it. The bus driver told me that I couldn’t have the cart blocking the aisle, and that I had to put it in the luggage area at the front of the bus. So I traipsed down the aisle with my cane in one hand and the handle of the cart in the other. I put the cane down, picked up the cart, put it in the luggage rack, picked the cane back up, and went back to my seat.

As I was doing this, I was wondering whether I was confounding people’s expectations of a person using a cane. Were they surprised that I could stand on my feet long enough to pick up a cart and put it in a compartment three feet off the floor? Did they think I was faking disability? I’m not sure. But I was very interested in the contrast with how I used to feel walking through the world with only invisible disabilities. Before I used a cane, I generally had people assuming I was nondisabled and perfectly capable of doing everything in a “normal” way, and I was aware that they were rather shocked to discover that I’m disabled. Now, I generally have people assuming that I am disabled, and I’m always aware that they may be shocked when they see me doing things in a “normal” way.

No one said anything. I didn’t sense anyone giving me the evil eye. But I wonder about it. There is a self-consciousness I feel now that wasn’t there before — a sense that other people might be expecting me to live down to expectations. It’s very odd. Living down to expectations has never been my style. So it gives me a sense of power to just do what I need to do, whether it confounds people or not.

© 2013 by Rachel Cohen-Rottenberg


A Conversation with My Fellow Travelers

I have begun handing out bag lunches in the park by the river. A great number of homeless people hang out there during the day — some in the meadow, some by the pond, some under the trees. The bag lunches are nothing fancy: a sandwich, some fruit, a dessert. I carry them in my rolling cart, and I walk along with my cane, asking people whether they’d like something to eat.

On Monday, I happened upon three guys sitting on benches — two on one bench and one on the bench across from them. Two of the guys were white and looked to be in their 60s. The other was in his 20s and Hispanic. All were very, very drunk. I walked over and asked if they were hungry and wanted some lunch. They took the lunches, and then one of the older guys said to me, “Sweetheart, we’re just a bunch of drunks. You’re traveling in the wrong circles.”

I said, “I don’t care if you’re drunks. You need something to eat, don’t you?”

At this point, the older man on the other bench called me over and gave me a book of scriptural quotes, kissing it first. The book was one of those little 3 1/2″ x 5″ photo albums into which someone had fit pages with scriptural passages. He showed me the pages. “This one is from Romans,” he said. “And this one is from Palms.” (Not Psalms. Palms. I loved that.)

I thanked him for the gift. As I turned to leave, the first man repeated a version of what he had said before: “Sweetheart, we’re just a bunch of drunks. We have money for food, but we spend it on booze. You’re traveling in the wrong circles, sister.”

Somehow, the repetition just stopped me in my tracks. In a split second, I felt so keenly how many people have been cast out from so many circles. I felt so keenly how many circles I’ve been cast out from over the course of my life. I felt how much I love what I do, because I can move through the park, and be accepted, and give kindness and respect, and receive it in equal measure.

So I just smiled and said, “No, brother. There are no wrong circles.”

And then I went on my way, carrying them with me, knowing they are kin.

© 2013 by Rachel Cohen-Rottenberg


Drunk, But With a Story to Tell: Just Another Day in the Crip Section of the Bus

So this morning, I was riding the Santa Cruz Metro bus to Live Oak when a woman tried to get on without paying the full fare. She told the bus driver she had only 50 cents. He told her she couldn’t board. She told him that she had to go and get her check. He told her she couldn’t board. She offered to pay double the fare tomorrow. He told her she couldn’t board.

I felt so badly for the woman that I offered to pay her fare. Of course, she was pleased – perhaps a little too pleased. She immediately ran over to me and said, “Thank you, thank you, thank you!” and hugged and kissed me. I could smell the alcohol on her breath.

After she paid her fare, she sat next to me in the accessible section and hugged me again. And again. And again.

I have a very difficult time talking to people when they’re drunk – unless of course I’m drunk, which I wasn’t, because it was 11:30 in the morning and, besides, I don’t drink. But the woman was really very sweet, and we had a pleasant conversation, which was punctuated by many pats on my knee and a few more hugs. And then, because she was curious and had very little verbal self-control, she asked why I use a cane.

I was in a generous mood, so I told her. To my surprise, she did not respond by telling me how I could cure my hip with prayer, yoga, or herbal remedies. Instead, she lifted up her shirt and showed me – oh my God — a partially healed knife wound in her abdomen.

I didn’t have time to feel cranky about the fact that she’d only asked me about my hip so that she could show me her wound. I was too busy listening to the story she told about how she’d gotten it. The story didn’t make a lot of sense, but from what I could piece together, she had been tutoring a woman’s son, and the woman came in and got angry and stabbed her. Somehow, in addition to the knife wound, she also sustained a back injury and ended up with two titanium plates holding her spine together.

On a normal day, I’m tongue-tied with drunk talkative people, but this story put me way into the zone of I have no idea what to say and never will. So I attached myself to the one point of commonality I could find.

I said, I have a titanium plate, too — in my neck! I have no idea why. I just needed to say something. Anything – other than, Oh my God oh my God oh my God.

She high-fived me, and my stop came up soon after. She hugged me again and promised to pay my fare next time.

Life is nothing if not interesting.

© 2013 by Rachel Cohen-Rottenberg


You Don’t Have to Thank Me For Doing the Right Thing

Over the past several months, I’ve become aware of how much I say thank you on any given day. In many ways, it’s just second nature. I was raised to say please and thank you and you’re welcome and excuse me, to hold doors open for people, and to generally look for ways to be courteous. It’s ingrained in me to say thank you any time anyone does anything for me at all.

The odd part? I thank people just for doing what they themselves expect as a matter of course.

In a post today, Dave Hingsburger at Rolling Around in My Head talks about this phenomenon, noting that he thanks people for what they take for granted every day. They assume the right to pass through space without barriers. Dave thanks people for making it happen for him.

Like Dave, I don’t think that showing my appreciation of what people do for me is wrong, per se. Courtesy has its place, and exchanging thanks is way of saying, “I see you and I appreciate you.” But when there is no even exchange, and when people feel a little too much gratitude for basic things they should expect as human beings, there is a problem.

The question of saying thank you has been coming up a lot for me lately around the issue of space. When I first arrived in Santa Cruz, I spent a fair amount of time weaving around people on the sidewalk. In the rurals of New England, where I come from, people tend to give each other a wide berth. But oddly enough, here in mellow hippie crunchy Santa Cruz, it’s very different. Most people have a strangely aggressive sense of space. Perhaps it’s just the fight for space in an urban area, where people have to stake out their claims. I’m not sure. But I can’t begin to count the number of times I’ve had people practically dare me to get out of their way on the sidewalk or assume that I was going to walk right into the street to make room for them. Since I’ve started using a cane, I’ve become very sensitized to it.

The first few times it happened, I thought that the folks who passed a little too close to me just had a poor sense of where they were. But then it kept happening every day, to the point that it became statistically impossible that so many people had spatial orientation issues. There is a strange sort of game that people play around space, and for a while, I found myself saying thank you to people for making space for me — even when they were taking up more than their fair share of space and impinging on mine. While other people were expanding their sense of space, I was making it a virtue to get small and take up less. And then I was saying thank you for people letting me by.

After a couple of experiences in which people became actively hostile, I decided to take a different approach. I decided that I had to stop bobbing and weaving. I had to stake out my claim — just my claim, without challenging the claim of anyone else.

So now, when I walk down the street and I see people taking up the majority of the sidewalk, I don’t walk onto the street. I keep to my trajectory, I hold my head up, and I show that I expect them to get out of the way. They generally do. And no, I don’t thank them. They’ve done the right thing. They’ve taken up their space and no more. Things are as they should be.

I shouldn’t have to thank them any more than they should have to thank me. Of course, I have my own set of privileges. People thank me all the time for doing the right thing, and I need to start speaking back to that, too. If I shouldn’t have to be constantly thanking people for doing the right thing, other people shouldn’t have to constantly be thanking me either.

The issue comes up most often in my interactions with people on the street. There is almost always someone sitting on Pacific Avenue with a sign asking for spare change, and I’ll sometimes ask if I can get the person some food. The responses to these offers vary. Some people just say no and ask for money. I’ll usually give a few dollars.

Most of the time, though, people take me up on the offer. And most of the time, people are very thankful — thankful in a way that pains me. It’s not that people are wrong for saying thank you. It’s that the whole damned deal is wrong.

I recognize where some of it comes from. I’ve had times when I’ve felt so demeaned and so ignored that any kindness filled my soul with gratitude. It wasn’t so much a choice to feel that way as a moment of sheer relief that I didn’t have to have my defenses up for five minutes. When you’re in that position and someone comes along to do a kindness, it’s like manna falling from heaven. There’s a gratitude — not just for the person, but for whatever God or cosmic power or act of fate dropped that person into your path.

I watched this kind of gratitude and relief come over the face of another person yesterday. I was talking to a guy trying to get into rehab and a shelter. He looked so surprised — no, shocked — that I was being kind. It was as though he were looking at a mirage. When I asked him what he wanted to eat, he mumbled something about beggars not being allowed to be choosers.

When I assured him that, in fact, he could choose, he asked me for an egg salad sandwich. And as I was going to get it for him, he said, “You’re an angel.”

That’s when something broke in me. An angel? Just for getting a man an egg salad sandwich? No. I couldn’t let it pass. I said, “No, I’m really not.”

As tired as I am of thanking people for doing the right thing, I’m even more tired of having an excess of gratitude come at me for doing the right thing. I don’t mind being thanked as a courtesy, and I don’t mind expressions of gratitude to God and the universe for whatever good things come along, but I’m tired of getting kudos for treating people like human beings. The gratitude that comes my way says so much more about the world we live in than it says about me. It’s not that I’m an angel. It’s that the world we live in is exceptionally harsh and uncaring. You do the right thing — which is what we’re supposed to be doing in the first place — and it looks exceptional only by comparison.

No one should go hungry.

No one should be spat on.

No one should be harassed or assaulted.

No one should be ignored.

No one should have to thank someone profusely for space, or access, or bread, or kindness.

All of these things are a matter of justice, not a matter of charity.

So I need to stop constantly thanking people for doing what’s right. And I need to let people know that they have a God-given right to expect me to do right by them. I don’t need their thanks. I just need to do the right thing.

© 2013 by Rachel Cohen-Rottenberg