Wednesday, April 25, 2012


Accessible: easy to approach, reach, enter, speak with, or use.
The above definition is from I looked it up before I began writing this blog just to make sure I understood the term properly. How often have you seen signs for something that is accessible or even called a theater, restaurant, store, fill in the blank, and are told, ” yes we are accessible,” only to arrive at your destination to discover that they are not accessible at all or only accessible under the most ludicrous circumstances possible? More than once, I have had to navigate through garbage or storage under humiliating conditions to gain entrance to a restaurant. I have gone up or down ramps that made me feel as though my life was in danger, at angles that surely would've impressed extreme sports enthusiasts. I am a pretty easy-going guy and it can take a lot to get my blood boiling, but all I can say is, living with multiple sclerosis has the potential to really raise one's temperature.

Last week, we were sitting on the bench outside of Mud, one of our favorite java joints, enjoying iced coffees in the warm spring sunshine when I felt the urge to use a restroom. As much as I love the coffee, Mud is unfortunately not accessible (an immense step at the entrance). I needed to act quickly. MS and bladders, man oh man. There was a Starbucks on the next block and, since New York lacks public restrooms, I headed straight there. The only problem was, since everyone else uses Starbucks as a public toilet, there was a line six people long when I got there. I remembered that our favorite Ukrainian restaurant, Veselka, was across the street; they have a "disabled" bathroom, so I headed straight over there. Except, my scooter was too big for the space. After a minute or so of trying to force my scooter to fit, I accepted the reality of having to go back to Starbucks and get back on line. Fortunately, a woman who had been right behind me on the line before very kindly let me go ahead of her. Disaster averted!

Last year, I read about a new restaurant in my neighborhood, Redhead's. The review said it was exceptional and, to me, the food sounded altogether appealing: Southern food updated for New York sensibilities. They told me over the phone they were accessible. When Alida and I arrived, there was a step about a foot high I guess I was supposed to navigate over on my scooter (maybe I could fly?). Who in their right mind could think getting over a step like that made the restaurant accessible? I cruise around my neighborhood often and find myself dumbstruck by the amount of restaurants and stores with only a three or four inch lip that could easily be adjusted for a smooth, straight entry. The powers that be, however, never think about a simple adjustment that would make my life and many others like mine so much easier.
They won't get my business, but that's not the point. In a modern city like New York, these issues should not exist. Heck, they shouldn't have to exist anywhere. It boggles the mind when a rinky-dink little deli or drugstore has gone to great lengths to adjust their entrances but a chichi restaurant will leave its entrance untouched and therefore inaccessible. My mom says I should write to the newspapers to let them know about this discrimination and the issues with insurance companies, too (don't get me started on that one). So many indignities, so little time.

One of the greatest shocks I received occurred a few years ago when a classic Hitchcock film was playing at the Ziegfeld, one of the last remaining movie palaces in New York City. Excited about seeing the film, and since I had never been there with my scooter, I called the theater in advance to make sure I could get in. To my dismay, they did not have a disabled entrance nor did they adjust any of their many doors in order for someone like me, or perhaps you, could get in and go to the movies. The ultimate fuck you! Needless to say, it can feel disheartening when simple pleasures in life are eliminated as a result of the clumsiness, thoughtlessness, disrespect, and/or bone-headedness of able-bodied individuals. 

We become especially sensitive to these exclusive situations. I go down beautiful tree-laden streets in historic neighborhoods and become acutely aware of the fact that, even if I wanted to, getting into any of those houses/buildings is an out and out impossibility. It sure makes me feel grateful for the ramp they built into my building a few years back. And I shudder to think about what things must have been like in the years before I required a scooter. Fortunately, these days inaccessible buildings are the exception rather than the rule. 

And while New York is one of the better cities when it comes to corners that have been adjusted for scooters and wheelchairs, there are still those moments when one is scooting along at a good clip and you suddenly come upon one of those old foot-high corners that has not been adjusted. It feels like a slap in the face. You don't have to think too hard about "what if" I accidentally went flying off such a corner.  One thus becomes used to memorizing the problem corners and adjusting routes accordingly. Except when you forget and get stuck, forced to go back a block and off the curb of the previous corner.

So what is the moral of the story? We need to be resilient; we need to be strong in the face of adversity and inaccessibility. Because we never ever know when it's going to look us straight in the eye. I don't know about you, but getting out there and facing and overcoming these everyday challenges, however miniscule, frustrating, or annoying, is still a darn good reason to get up and out the door in the morning. It sure beats staying inside all day wondering about "what if?"

Have a great couple of weeks.  I hope you can enjoy the spring wherever you are.

Best Wishes,


Bonus information for New Yorkers:

FYI, this is what I came across at regarding rules for restaurants that make the issue even murkier:
Where problems arise for disabled, and specifically wheelchair-using patrons is in buildings constructed before 1990. The ADA requires what has come to be described as ‘reasonable accommodation.’ What may seem reasonable may or may not be realistic, and, try as they may, some building owners are unable to provide full accessibility.”

Read more:

Also in Metropolis Magazine regarding restaurant accessibility, from two year’s ago:

“This is all to say that it’s a somewhat complicated process, designed to accommodate a variety of interests. And while the vast majority of existing city housing does not have to meet accessibility standards, anything built in the last twenty years or so, and any future construction, does.”
Read more:

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: