“To make a reservation two to seven days from now, please press two.”
I press two. An agent picks up after three rings.
“Mobility Agent 524521. May I have your client identification number, please?”
I give it to him.
“How may I help you, Mr. Nagle?”
“I would like to make a ride for Thursday, please.
“Mr. Nagle, you already have two rides scheduled for that day.”
“I know. I want to go somewhere else.”
“And you are keeping the other rides?”
“Where are you going?” There is a note of slight disbelief in his voice.
“The Ottobar, 2549 North Howard.”
“Is this a business?”
“And what will you be doing there?”
“Seeing a band.”
“What time do you need to be there?”
“And what time will you return?”
I have this conversation every Saturday morning, when I make my extracurricular Mobility rides. Even in 2018, almost 30 years after the Americans With Disabilities Act, the idea of a disabled person living a relatively normal life is still a novelty. I’m usually the only handicapped guy in the room.
I have cerebral palsy, which means my body has too much muscle tone, making my muscles tight and spastic. I can’t walk and use a wheelchair. It’s like living an episode of TV’s “Perfect Strangers,” except when Balki does his dance of joy, my body tightens up and I can’t breathe. Once you’ve witnessed a spasm, you never forget it, which makes me a ton of fun at parties.
Our culture has a very specific idea of what a disabled person should be. We are either inspirational vessels for able-bodied people to project their pity onto, or we are gung-ho “Murderball” types who consider handicapped people that haven’t climbed the K2 to be complete and total wimps.
I fall into neither one of those categories. I’m not going to feed you the same old song and dance about how I wouldn’t change my disability for anything. I would. Imagine being 33 years old and having a trip to Chipotle being one of the only spontaneous activities you can do. It sucks. Every part of my life is planned down to the minute, except for what I’m listening to (The Replacements, thanks for asking). It requires an enormous amount of patience, which is hard to muster sometimes.
When you are disabled, you hear the word “advocacy” a lot, as in: “John, you’d be a great advocate.” It’s flattering to hear, but when these well-meaning (usually able-bodied) people suggest that to me, they have a very specific form of advocacy, which are speeches and joining groups. I’ve done plenty of both, and it’s not really my style.
I advocate for myself by going to shows, by going to the movies, by getting that burrito bowl at Chipotle. The more people see me out and about in this great of city of ours, the less odd it becomes. By visiting spaces that I technically shouldn’t be in, it helps to open doors for other people like me.