That i-word

   Some years ago, a woman who was attending my Quaker meeting at the time approached me after meeting for worship one Sunday.  She told me that she kept a picture of me on her refrigerator and that looking at it always made her feel better.  I just smiled and looked at her, not knowing how to react. 

   I was a bit freaked out.  It was a weird thing to say – even creepy.  For one thing, why did this woman, who I wasn’t close to, keep a picture of me on her fridge?  (This must be how film stars feel – and I’m not a film star!) And why did seeing me make her feel better?  Was it because it reminded her that at least she wasn’t disabled, not to mention severely disabled? 

   Or was she just being nice saying this? 

   Or could it be I was being negative and cynical? 

   For most of my life, I have had pretty much that attitude when people said things like this to me.  I have had real problems with the i-word. For years and years, when people told me that I’m inspiring, that I’m brave, courageous, determined, etc., I would cringe, to say the least.  Really, I hated it.  I thought these people were just being nice.  I thought they were being patronizing. 

   It was like they were taking an air-brush to me, glossing over what I was saying, not seeing what my life is really like. 

   In recent years, though, my thoughts on all this, on the i-word, have been changing (or trying to change). I am seeing that when people say I’m inspiring, it’s because, for the most part, I really do inspire them.  I see that when they see me out there, being brave, determined, it makes them feel more like getting out there and being brave, determined, etc.  I see that it’s not about me, that it’s not about being nice to me and trying to make me feel good.  It’s about them and what they get out of me. 

  I see it when a gay man thanks me for giving him the courage to get out, to be out and be himself. 

   I see it when I meet disabled people and feel energized seeing the different, sometimes better ways they do things and also seeing that I’m not alone.  Yes, I’ve come to realize, I find disabled people inspiring! 

   Sure, this being inspiring is still weird.  It feels odd and phony that what I just do to live my life is so admired, held up to such a high esteem.  It is like a responsibility, a weight, that can be a pain.  On the other hand, if I can help people by giving them strength and courage, by moving them and empowering them, by, yes, making them feel better, cool.  I kind of like it.  At least it’s better than being angry and cynical and always suspicious of people. 

   Now the question is how do I deal with this responsibility, which really can get to be a weight and be quite draining?  How do I handle being inspiring when I don’t feel inspired or inspiring?  And what about when it’s hard to tell whether someone loves me because of me or because of how I inspire them?  Or where is the line – or is there a line? 

Wanting to see Bernie

He really wanted to go. He really wanted to see Bernie. 

My friend was visiting for the weekend, and I had made plans for a special evening. I had a nice dinner ready (spaghetti with red pepper sauce, asparagus, lemon tart), and then we were going to go to a symphony and choir concert at the Colleges here in Claremont – they were doing Camina Burana by Carl Orff. It was going to be special. 

It was a special visit. My friend, Carl Sigmond, and I had met for the first time last summer at Pacific Yearly Meeting after hearing about each other for years. We had exchanged emails since July, but this was his first time in Claremont. He has Cerebral Palsy like I do, uses a power wheelchair like I do, and has impaired speech like I do, and he came here on the train on his own from where he lives and works in Nevada City, CA, a good eight hours away. I like how he is very independent and very smart and how he is not afraid of doing things. I like how he is a lot like me. I haven’t had anyone in my life quite like him, quite like me, at least in a very long time. 

I had this nice plan – to make his last evening here special – but then we heard that Bernie Sanders was speaking in Los Angeles that afternoon. He looked online and saw that we could go see him, and he really wanted to go, saying that he loves Bernie and that this was a great chance to see him. He was so excited that I knew that Carl Orff and a symphony and mass choir wouldn’t cut it. 

So we took off in our wheelchairs, with all our devices and gadgets. The plan was for the two of us to catch the 4:17 p.m. train a few blocks from my house, get off at Union Station, and then go a few blocks to the park in front of City Hall where Bernie would address a May Day rally. Carl would text my attendants on the phone mounted on his chair and let them know where and when to pick us up in my van, since the trains don’t run late on Saturday. We would all go out to dinner on Olvera Street. That was the plan. Sweet! 

The train ride gave Carl and I time to talk and get to know each other more. It gave us time to learn more how to speak to one another, how to understand each other, how to position ourselves to see more of each other. 

In L.A., we ventured out and zipped through the crowds and over the rough streets and sidewalks, passing over the US-101 freeway. We each had ideas of the best route to get to City Hall, and we kept catching up with each other. I did most of the catching up, as Carl got more and more excited and could barely stay in his chair, ecstatic to see Bernie. 

When we got to the park, there was a crowd with banners and chanting and all the things you would expect – I was right at home in my overalls – but it was nothing like the Sanders rallies you see on T.V. Carl, maybe sensing that something was up and being considerably less shy about speaking to strangers than I am, asked a person in a bright red Bernie shirt where Bernie was to be speaking, expecting full well that we would have to stand in line, go through security, etc.. Carl knew the drill. The woman replied, “Mmm… I don’t... He might not be here. I don’t know. That would be nice.” In other words, Bernie wasn’t coming – sort of like Godot. The woman, with kind, smiling eyes, was letting us down as gently as she could, albeit in a patronizing tone. (I later read that Sanders was in Washington, D.C. at a national press dinner and that this L.A. gathering was essentially a May Day labor rally. Carl realized later that the Sanders campaign website had it listed as a Bernie Sanders rally, rather than an official event.)

Carl was bummed and quite embarrassed, knowing how excited I had been for the special evening in Claremont. He told me that he was sorry, and we returned to Union Station, where we talked more while we waited for my attendants to come with my van and go out to dinner with us. 

But I wasn’t sorry. I wasn’t sorry at all – about not having the dinner I planned and not going to the concert, about going all the way to L.A. and finding out that Bernie Sanders wouldn’t be there. As far as I was concerned, we had seen Bernie. Or, at least, we had felt the bern. 

I sure felt it. I felt the bern when I said okay and took off on the train with my new disabled friend, leaving my attendants far behind. I felt it in the freedom in being able to take off, together, in our wheelchairs, to go somewhere 30 miles away on our own. I felt the bern in the ability and the opportunity for us, with our eye-catching spasms and our hard-to-understand speech, to go where we want and do what we want, just like anyone else, just like any two friends. 

No. I wasn’t sorry at all. What Carl and I did that day, feeling the bern, was so much better than any Orff concert. (And this one was pretty good when I went to the second performance the next afternoon after my friend left to return home.) 

[Thanks to Carl for some editing and tweaking here - and more.]