I don’t need God to bless me

We hold these truths to be self-evident: that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.
-Thomas Jefferson

Our founding father had the right idea, on paper anyway. I think he forgot a few things, most of which I’ll save for another time; I think mister Jefferson forgot the disabled community. Yes, the disabled community has the most rights protecting us, the world seems to forget that we too are afforded the same basic unalienable rights as our able-bodied counterparts. Such basic rights include: having a job.

I work part-time at a local higher end department store. I am at least the local branch’s if not the entire corporation’s first disabled associate. Luckily, the management and my co-workers are nice and very accommodating, which initially I wasn’t expecting. It’s the customers that can be a bit narrow-minded.  Out of my two shifts a week, I can guarantee at least one customer will make some sort of microaggression toward me during at least one of my shifts. If you don’t know what a microaggression is it is defined as:

mi·cro·ag·gres·sion – a statement, action, or incident regarded as an instance of indirect, subtle, or unintentional discrimination against members of a marginalized group such as a racial or ethnic minority.

Typically these sentiments are just verbal usually along the lines of:

A) “You work here, WOW that’s so great!”

or

B) “Oh, you work here I assumed you were a customer.”

But in the instance today I was making my rounds on the sales floor when I spotted a man presumably late 40’s/ early 50’s and his wife. They looked a bit confused so I stopped and asked for help; the man declined my offer then proceeded to clasp my hand in between both of his and say: “God Bless you.”. Not knowing what to say I quickly thanked him and went about my business. I appreciate the gesture but at the same time find it terribly awkward because I’m willing to bet that, that man wouldn’t have done that to my able-bodied co-workers purely for doing their job.

I don’t understand why people think it’s so great that I, a wheelchair user but otherwise average twenty-two-year-old have a job. It’s just a job.

 

Wish You Were Here

*Author’s note: I apologize for the lack of posting there’s been a lot going on; some of which I can’t yet blog about.*

My mom passed away from her battle with stage IV cancer in January of 2013, I was just seventeen and in my senior year of high school. Since I was relatively young when my mom passed away there are a lot of important events in my life that unfortunately, my mom had to miss out on; such as my high school graduation, moving away for the first time, and my first job among other things. I’m experiencing a greater sense of loss once again as I prepare for the next step in my journey into a more independent life; I soon will be moving from my group home where I’ve lived for about a year and a half to a supported apartment setting. Although being an additional twenty miles away from my family and hometown is a bit daunting I’m excited about the change. I just wish my mom could physically be a part of the experience too.  This move makes good on two promises, one to myself and one to my late mother that I would not be stuck in our house in our rural town forever; that I would go out and live my life to its fullest extent. I’ve made massive changes in a short time so I think I’m definitely keeping that promise well. I’m excited to see what the next leg of this journey has in store and Thursday kicks it off when my dad and I go visit the potential apartment.

 

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.

 

Senior prom, age 17

Dear 18 Year Old Me

Dear Sam,

Right now you think this is the worst time in your life. Well for that I have good news and bad news because I know Patience isn’t your virtue,  I’ll start with the good news.   The good news is it gets better; the bad things now won’t be bad forever.  The bad news is things will be rough until you turn 20.

So I know it’s hard but just hold on until 20.  And in that year things will finally get better.  But they too will seem like the worst days. And your 20th year you will move away from home. In the days after your move, you will hate everyone you love spending your waking hours howling with dispair and hurling bombs of emotional blackmail at dad: “If Mommy were alive she would bring me home!” But trust me, somewhere along the way when you’re busy making these new walls into a home, the crying stops.

Six months after your move and 5 days before your twentyfirst birthday, you`ll meet a man who will singlehandedly change everything. He will bring a previously unfelt joy into your life. He will come unexpectedly as he isn’t your current eighteen year old gold standard, but he will bring everything you didn’t know you were missing.

On kind of a whim you will decide to go back to college in the summer of 2017 after a few less than stellar attempts at higher education. But so far things are going well a new sense of purpose driving you to prove the naysayers wrong.

My point in writing all of this is that things have gotten so much better. As I’m a month away from my 22nd birthday I truly understand how far I`ve come not only from 18 but also from 20. My adulthood has been good to me thus far.

-Sam, 21

No Place Like (Group) Home

I live in a group home and have since March 2016. It’s a very nice place and has done wonders for my independence, but it isn’t home. Home is about 25 miles away, which is about 20 minutes maybe a half an hour if you’re a slow driver. For the first twenty years of my life I lived in the same house my parents had moved into around ’95 when I was an infant and later bought from my grandparents in the early 00’s. My dad, his wife (who is not my mom, but more on that later) and younger brother still live in the house I grew up in where I still visit when I can.

Home is where my mom succumb to a near decade long illness and gained her wings. Home has been the backdrop to one wedding, countless birthday parties and 20+ years of memories throughout the family. But if it weren’t for some people who loved me enough to both metaphorically and literally push me out of the nest Home is where I’d still be, not really living just existing among familiar walls.

It is on nights like tonight after a day with my family, a part of me longs to go home. Watching my dad leave down the driveway of the group home is always hard after spending a day together. It’s an act that brings me back to the day about a year and a half ago where I begged him with every fiber of my being to bring me back home. My first days here were the worst days of my life.

Don’t mistake my ocassional yearning for the familiar as a dislike for my new life. I love my life now and feel as though I’m becoming who I’m supposed to be. I often think about what would have and wouldn’t have happened if my family had given into my pleads. Home is a nice place to visit, but every plant needs to be replanted to grow eventually.