Disability and Representation

Changing the Cultural Conversation

Practicing Random Acts of Solidarity

Today, I was on the bus to work, sitting in the accessible section at the front, when a woman got on with her support person. I might not have noticed that the woman was atypical at all except that after she had retrieved her Metro ticket from the machine, she gave it to the blond twenty-something woman behind her. Then she walked over, sat next to me, and said hello. Her support person was across the aisle and behind us.

The woman was intellectually disabled and likely in her 40s. She was very friendly and very open. I felt immediately at home with her. She smiled at me and asked how I was doing. Our conversation went something like this:

Woman: Hi, how are you?
Me: I’m doing great. And you?
Woman (smiling and giving me a thumbs up): Great! Where are you going?
Me: I’m going to work. And you?
Woman (smiling and giving me a thumbs up): We’re going to the mall!
Me: Oh! The mall will be fun!
Woman (smiling and giving me a thumbs up): Yeah!
Me (smiling and giving her a thumbs up): Awesome!

At this point, a man across the aisle leaned over to me, held out his hand for me to shake, and introduced himself. I realized right away that they were together and that he was intellectually disabled as well. He seemed a bit younger than the woman, heavy set, and gentle. We shook hands and smiled at each other.

I was thoroughly enjoying myself and feeling at ease in a way that is unusual for me in a public place. There was something that captivated me about these two people. Their openness and their kindness were such a welcome relief from the harshness of the world. There was a decency and a presence about them that were palpable. In a flash, I realized how much trust it was taking for them to open up a conversation with me, a perfect stranger. I thought about the sheer difficulty of trying to make “normal” conversation. I thought about how hard they were working to try to “fit in.” I thought about their support person, who was sitting in back of them and looking quite bored.

I continued talking with the man.  I asked whether he were going to the mall too, but he said no, that he was getting pizza. We started chatting a bit about how much we like pizza and how what a nice day it was, and so forth, when the support person interrupted from afar and said:

“We’re not going to the mall. We’re going for pizza.”

It was so jarring. Her tone was abrupt and corrective. I thought about how many times her client, over the course of 40-odd years, must have been told she was wrong. And maybe she’d made a mistake about the mall, but so what? There was so much right about her. She was succeeding at being welcoming, at being cordial, at being engaging, at being lovely. It really saddened and angered me that her support person was interrupting all that.

As though that weren’t enough, the support person started trying to address me and talk about her clients and what they were doing. She wasn’t joining in our conversation. She was attempting to interrupt our conversation and to have a conversation over them. It was terribly rude.

I got the sense that, in the face of her clients having a conversation with someone who was very clearly enjoying their company, she didn’t quite know what to do. It was as though her whole know-your-place world was being overturned. After all, while talking with the man and the woman, I wasn’t being patronizing and I didn’t give the impression of wanting to change my seat. In fact, I was subverting the thinking that says that those were my only options.

At this point, there were only the four of us on the bus. And for a very  brief moment in time, three of us had done something deeply subversive: we had dismantled the hierarchy that said that I ought to establish my perceived normalcy over them and that they ought to accede to it.

It must have been quite confusing for the support person: except for my cane, I looked perfectly “normal.” So what I was doing having such a great time with these people as though they were my equals?

I immediately registered her attempt to take my attention from them, and I was having none of it. So I did something that I very rarely do with anyone: I ignored her. I kept my attention focused on the man and the woman like a laser beam. I was going to keep that hierarchy overturned until I got off the bus.

It really wasn’t a conscious decision. My focus just stayed with them and would not be moved. A kind of stubbornness kicked in. I simply would not let anyone hijack the conversation: not when we all were enjoying it, not when they had extended their trust to me, not when someone was trying to put them in their place.

So we kept talking until my stop came. And when it was time to get off the bus, I said to them both, “Well, it was great meeting you and talking to you. Have a wonderful day!”

I hope they did. I hope our little revolution on the bus rocked their world, as it had mine.

© 2013 by Rachel Cohen-Rottenberg


    4 comments already | Leave your own comment

  1. 7/24/2013 | 2:25 am Permalink

    Your post was shared by the Disabled Peoples Association of Singapore and I am so glad that I got to see it and so was introduced to your writing. I hope to read more and to benefit from your advocacy and understanding of disability. My daughter is now 15 and has been a quadriplegic since a stroke at the age of 9. One of the challenges of living where we do is the lack of mentors and role models for her but also for me as a carer. So I am very much looking forward to learning from you and your site and to sharing it with my daughter so she can understand more about what advocacy is.

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  2. 7/24/2013 | 3:20 am Permalink

    Sometimes it is the small and everyday things that change the world. =)

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  3. 7/24/2013 | 6:35 pm Permalink

    One of the problems with being a care-taker is that, unless you are 100% invested in the lives of those you’re caring for, it is an extremely lonely job. Very few people exist who can be that involved with anyone outside of themselves. Many people get into the job thinking it will be easy-ish, only to find out it is not. I think you did the right thing. But I also feel sorry for their person.

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  4. 7/25/2013 | 6:32 pm Permalink

    Thanks for being an awesome human. :)

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