October 2017

Separate But Not Equal

If you’ve been a follower of my blog then you are familiar with the media battle I’m involved in, in regards to the documentary I’m involved with. For the past few weeks myself, the producers, and the agency that is funding the film have been pushing for the film festival which is scheduled to screen the documentary to hold the screening at an accessible venue. After some media attention that was less than favorable for the film festival the venue was finally moved to accommodate those with mobility issues. Sounds like a win, right? Not exactly, although those of us involved are generally pleased with the change of venue, FilmColumbia has also chosen to remove Possibility: The Space Between Limits from its short film program. In addition to moving the venue the date and time has been changed as well; the film is now showing on an entirely different day at an obscure time than its counterparts. It is this blatant segregation of the disabled community that the film itself is trying to combat. Does FilmColumbia not realize bygone is the era of hiding away the differently abled and it is this degrading exclusion from their programming that makes the organization as a whole look no better. The move of the venue puts a bandaid over the issue but the wound of exclusion festers underneath.

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:

https://www.hudsonvalley360.com/article/film-screening-keeps-out-some-disabilities

They’re All Gonna Laugh At You

Tomorrow I start orientation for my new job, and it dawned on me that this’ll be the first time in my life that I will be alone somewhere new without an omnipresent other person. I am nothing short of terrified. I’ve always been an anxious person even with someone to act as support so the fact I’ll be alone scares me even more. I haven’t had to make a friend that didn’t (a) work with me or (b) grow up with me in probably, ever.  I’d like to think I’m a friendly enough person that I’ll do fine, but that at the same time what if no one likes me?

I keep having a recurring image of the scene from Carrie where she keeps repeating: “They’re all gonna laugh at you!” because I’m kind of convinced they might. Or even worse I won’t have anyone to eat lunch with and I’ll be the weird girl who eats lunch by herself. Add to the fact, I’m terrible at”small talk” and social ice breakers are the bain of my existence. Is it possible to die from a panic attack?

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.

Wheelchairs In The Workplace

In recent months I’ve begun my search for employment,  because I’m nearly 22 and SSI isn’t really a liveable income. I also have wine taste and tap water money when it comes to life. This journey has been nothing short of complex, just like every other task I’ve ever taken on. The challenges for employment are twofold in my case, the first, obviously being my onmipresent wheelchair, living in a small city about 120 miles north of Manhattan that has recently become a hub of activity for artists and free thinkers alike; one would think there would be hope for more wheelchair friendly employment options, there isn’t. Only a small handful of accessible businesses exist within the main drag of the city I live in. Another issue I face when seeking employment is one that is for now coupled with my being wheelchair bound, I cannot use the bathroom by myself. What this means for me is that the longest I can comfortably go without needing the restroom is about four hours, any longer and I begin to writhe and twitch which can be mistaken for seizing.

As I began searching various employment search engine sites I made sure to try and find part time jobs. I sent a handful of applications in for several desk jobs around the area and never heard anything back. About a month ago I even applied for a front desk job at a small local hotel, I had a preliminary inview but didn’t get a call back.

It was exactly a week ago today that I went on my second job interview ever for a retail job at the local branch of a department store. When I went in for the interview I was visibly shaking with nerves and mentally convinced I wouldn’t get the job because of my disability. Despite my visible nerves I was told by my interviewer that I did extremely well. As of Tuesday I was offered the position. Good things come to those who wait.

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.