Friday, April 6, 2012


This is a blog in two parts, though you will see they are thematically related. Needless to say, the adjustments we often have to make as a result of living with our disease can be head-spinning!

Remember the Peanuts movie from the ’70s, Snoopy Come Home, where Snoopy kept trying to go to places like the beach, the park, the library, etc.? And every time, he encountered a sign that read, and a voice that intoned, “No Dogs Allowed.” (see YouTube clip below). That is often the way I feel lately when I go places where able-bodied people can climb stairs and reach their destinations with relative ease. When an elevator is broken, as was the case several times recently, I felt a little like Snoopy appeared in the movie: angry, annoyed, and agitated. 

Two weeks ago, I went to the gym to discover the elevator was out of order, which meant I could not get to the second floor where all of the Nautilus machines that are important to my regular workout are located. No elevator, no workout. Readjustment again, which is kind of like living with MS in a nutshell.

Then on Sunday I went over to the movie theatre early in the day to buy tickets for a late afternoon show of The Hunger Games. I’d loved the book and was enthusiastic about seeing the well-reviewed film. When I arrived, the fellow by the automated ticket machines pointed to the broken elevator. Well, those plans went out the window pretty quickly. I realize it’s not personal, but there seems to be a sign only we can see: "No Crips Allowed."

One of the perks of being disabled and using a disability device is you are entitled to discounts to theater, some concerts, and other forms of live entertainment. So last week, Alida and I saw Death of a Salesman on Broadway. Typically, when we go to a show, there is a space where a seat was removed that allows me to park my scooter and stay there throughout the show, no problem. Well, Death of a Salesman is running in an ancient theater, and the seats have not been adjusted to accommodate mobility devices. As a result, I had to transfer to a seat. This meant: I also had to navigate two small steps, unexpected but manageable.

This left the issue of what to do with my aisle-blocking scooter. Let’s just put it this way: you’d have thought I was the first person to ever enter this theater in a scooter or wheelchair. After I got into my seat, the couldn’t-care-less usher pointed to a space behind the back of the orchestra seats and told me to park it there, which Alida did. After we were finally settled in, another theater staff member approached me to say (in a not particularly sensitive or friendly way) that I couldn’t leave my scooter where it was; it needed to go all the way down the hall to a space on the side of the orchestra. Well, we flat out refused despite the guy’s forcefulness. It just didn’t seem right. Eventually, the kind house manager showed up and offered to move the scooter for us, which we greatly appreciated. This is what should have happened in the first place! 
But the story doesn’t end here. At intermission, another equally clueless usher told me I needed to move the scooter yet again because it was blocking the exit door. At least we could say the manager put it there. All along, there was a feeling that everyone thought the disabled person (me!) was able enough to move his own disability device and then walk back to the seats. Like I was just being difficult to piss them off. Seriously? Talk about ignorant and disrespectful. What would they have done had I been traveling solo? I shudder to think. I’m lucky to have been with Alida, but she (or anyone else I happen to be with) shouldn’t be forced to move my scooter because of an organization’s incompetence and poor planning (which I’m guessing is a violation of ADA).

All of this goes to show you that things are rarely as straightforward as we want them to be. We constantly adjust and adapt to circumstances beyond our control, scenarios able-bodied people never have to face. Sometimes it is a wonder we even get out of bed in the morning. And yet we do. Because as problematic as life with MS can be sometimes be, it’s the only one we’ve got, and there isn’t a doubt in mind that it is worth living.

By the why, Death of a Salesman was excellent, Philip Seymour Hoffman as Willy Loman superb. You’re going to have to wait for my response to The Hunger Games (the elevator should be fixed by now!).

Next time: when the word “accessible” doesn’t mean “accessible.”

Have a great, productive couple of weeks!



Snoopy Come Home:

1 comment:

  1. Thank you so much for your thought-provoking blog post! I have some friends who are supportive and help me a lot. One of them is a Mental Health nurse, and she makes fun of me sometimes because of my MS, blaming me for everything that goes wrong. This is fine, because she and I both know she's joking. If someone else did this to me, I know she'd stand up for me.
    The 'blame the disabled person' thing is fun when all are in on the game. It's deadly serious and humiliating when the disabled person is being unnecessarily victimised. Having MS can be a pain in the butt, but it can also help a person become Mighty Strong in terms of their spirit and level of empathy.
    Thanks for your writing, I'll explore some more of your work here.