I wasn't going to write about this, but I read something recently that changed my mind. First, the ballgown.
Last month I put on my best outrageous vintage lavender gown, complete with built-in capelet (as one does) and headed for costumer extraordinaire Manuel's Christmas Party . If you don't know who Manuel is, you know his work. Often referred to as the Rhinestone Rembrandt, he's responsible for Elvis' gold llame suit, Johnny Cash's black wardrobe, the Stones and the Dead's Insignia, and countless other accomplishments.
The party took place at The Standard, a private club inside the Smith House. Built in 1840, the townhouse is Nashville's oldest standing example of ante-bellum Italianate architecture. According to their page on Yelp the place is wheelchair accessible.
But it isn't. Not even close.
In order for me to get into the ballroom I had to maneuver over a 2" threshold through a doorway so narrow my chair got stuck; twice. Then down a wooden path, at the end of which were ten steps with a portable ramp thrown over them. The problem with using a short, portable ramp over that many steps is the steep incline makes it very dangerous to climb (and "climb" is the correct term). It was way too dark to take any photos, so you'll have to take my word for it.
ADA guidelines state, "the least possible slope shall be used for any ramp. The maximum slope of a ramp in new construction shall be 1:12." That means for every twelve inches in length a ramp should rise one inch. New construction is legally bound to provide wheelchair accessibility using these measurements. But, because The Standard is a private club and a historic property, it can claim historical protection and bypass accessibility requirements.
So I sat there in my lavender gown, staring at a ramp Evel Knievel wouldn't brave, feeling left out and foolish. I had to leave. The people at the party saw the ramp and assumed I was just being a diva about it. They didn't understand, and that's not entirely their fault. This is not their reality.
But it is mine, and I'm not alone. A few days ago my friend Emily Ladau, who writes Words I Wheel By, recently shared her frustrations on her Facebook page:
"I know I'm usually all rah-rah disability, but today, I'm tired. Tired of always worrying I'll never find a parking spot and then having another car beat me to the last open space and noticing they didn't hang up an accessible parking sticker. Tired of accessible dressing rooms being stockpiled with junk so I can't get in or the accessible bathroom always being occupied. Tired of being told to go to the back entrance or the side entrance or just go around three blocks and through a maze and across the street and enter a secret code and then I'll be able to get inside the building. Tired of not being able to get through stores or restaurants and having to make a scene just to navigate. Tired of the complete lack of understanding that I cannot climb steps, no, not even just a few, and no, I don't want to crawl or be carried or otherwise relinquish my dignity. Tired of only having one option to do something when everyone else has two, three, unlimited ways to do it. Tired of feeling like I need to explain myself. Tired of feeling like an inconvenience or a burden. Tired of feeling like I should relieve any awkwardness because I'm the one sitting on the elephant in the room. Tired of feeling like I have to apologize for taking up space, for my existence. Tired of being tired. I'm just so tired."
This is my reality, and the reality of many people with disabilities. It's challenging to remain positive in the face of these physical and social barriers. There is little incentive to nurture a sense of self-esteem or take pride in personal appearance when access or acceptance are left to chance.
The fiasco at The Standard hit me - hard. On it's own I probably could've handled it, but it was part of a surrealistic chain of events that left me reeling. Emotionally, I ran out of gas and felt tired. Weeks later, when I read Emily's post, I responded:
"I understand completely! You have every right to feel the way you do. Vent, rant, scream...then re-center, refocus, and keep going. The alternative is to wither away in solitude, and I know you don't want that. There are victories, too, small as they may seem to you today. You aren't alone and your efforts matter."
It's time for me to follow my own advice. My efforts matter. Do yours? Let's see where 2016 takes us.