accesibility matters

Do No Harm But Take No Shit

Amidst my morning routine of daily pills, social media checking and steeling myself for the day ahead, my phone rings. It was one of the producers of the documentary I’m in, set to open at Film Columbia festival next weekend. She briefs me on the status of our battle for a venue change; not going well. Why a venue change, because the film club which is screening the movie booked it for the least accessible building in the town where coincidentally I grew up. And are refusing to move the screening. My producer also informed me that a letter written by the board of directors of the nonprofit that helped fund the documentary, to the film club was leaked to the press and is front page news. She asked if I am prepared for and okay with the possibility of more media attention as well as the possibility that I may be photographed being carried into next Saturday’s opening. I remind her that this is my life and notoriety is nothing new. Worst case scenario, I explain, I bring more attention to the problem and our project. The saying goes after all, the squeaky wheel gets the oil. I don’t intend to harm the reputation of Film Columbia nor is any of this written with ill intent; as I think the organization truly didn’t think of the fact that their venue of choice is inaccessible for not only wheelchair users but anyone with a mobility issue. It is the fact they won’t provide a solution once made aware of the problem that I will not stand for.

If you would like to read the news article mentioned in this post it can be found here:

Lights, Camera, Action

Anything is possible, at least that’s what I was taught growing up. Deep instilled in me is the notion that can’t isn’t a word and possibility is limitless. That’s why I was thrilled last fall when I was approached to be in a documentary featuring a group of other disabled individuals and the various relationships we form.

Although I am in a romantic relationship with a partner whom I adore and he is mentioned in my segment he isn’t the main focus. Instead, I chose to focus on my relationship with the world around me as I toe a unique line of disabled but really. My family even gets in on the action featuring my niece and nephew (who will surely steal the show) and a very candid interview from my dad that’ll make you want tissues.

It was extremely important to me to do this project because of  how raw and candid I get not only in my segment but also as the narrator throughout the entire film. If you’re in the Ghent, NY area on Saturday Oct 21st I suggest heading to Art Omi gallery for a cinematic experience that answers the questions the world is too afraid to ask. Possibility The Space Between Limits is a conversation with the disabled community you didn’t know you needed to have.

Welcome To New York

**Author’s Note: My apologies for not posting as often as I’d like. Being in college has kept me fairly busy. **

Last Sunday 9/24 I took an adventure about three hours south onto the island of Manhattan, or as it`s called around here ” The City”.  The assistant manager of the house I live in had been assigned by corporate to chaperone two ladies from the agency`s apartment program; she agreed under one condition, that I could go too. After inviting me she then spent the next few days assuring me our traveling companions were “cool” and that I would probably get along with them.

The following days were filled with making reservations for the Sugar Factory an elite restuarant known for insane 60oz drinks dubbed “the goblet”, celebrity clientel, and a selection of candy that rivaled Willy Wonka. Because trains are expensive on a fixed income my assistant manager who is a Queens transplant herself, offered to drive. This meant that although we were saving money I wouldn`t be able to bring my motorized chair, which was a good idea anyway.

Transfering me into the mini van was the least of our worries because as long as I have my AFOs (ankle foot orthotics) on I can stand-piviot transfer with some help. Our real fear was that we’d run into bathroom trouble; if you’ve ever been to the city you probably noticed public bathrooms aren’t really a thing there. This poses a major problem because you can pretty much count on my needing to pee every two to four hours like you can count on the sun to rise. So that meant I had to keep my food but especially fluid consumption to a bare minimum, oh and did I mention it was about 90° F that day? I didn`t eat or drink anything from 7:30 that morning until about 5:30 that night. I had to purposefully severely dehydrate myself because of NYC’s general lack of public bathrooms.

While on our 45 block trek uptown in the blistering heat I was nearly tipped from my chair 50+ times because of potholes and uneven sidewalks. Why on earth did we walk nearly 8 miles both ways? Because, it is simpler and faster as well as more wheelchair friendly than navigating various accessible subway entrances scattered throughout the city.

Overall, I had a wonderful time and would do it again but it’s not a trip I could do by myself. And if it weren`t for the Toys R Us employee that graciously let me pee in the employee bathroom after drinking the majority of a 60oz mojito, I would’ve had wet pants. In general though, NYC needs to step up their accessibility.