A week ago I met up with my newly picked Board of Directors for a photoshoot in Gainesville's downtown. It's one of the beautiful parts of the city. It's also the area where accessibility problems are visible the most. From brick roads to entrances with a high threshold, it's called historic for a reason. We were meeting to take some pictures for the website we were reconstructing. That day, it was mostly headshots, but I thought that if by any chance we got to do a little more Downtown serves as a good illustration of problems a wheelchair user faces getting around- that would work on the website as well. And nothing explains the reasoning behind starting my Foundation, and the need for organization like that than images that speak to the imagination. We've spent a few hours posing and discussing our mission. Some of us drove there from as far as Jacksonville and it was the first time we we've seen each other in person. After a job well done we decided to celebrate and continue the conversation for a bit. It's hard to find more inspiring surroundings when you plan to spread accessibility and awareness. We decided to relax at Harry's- a New Orleans style restaurant with a nice outdoor sitting area. When we got there and asked for a table the waiting staff didn't know what to do with us at first. Then they asked us to wait while they engaged in some heavy lifting moving the tables around to accommodate my wheelchair. My group was annoyed. The staff clearly wasn't prepared for someone like me to dine there. To them- it was the perfect case for our Foundation to take on. Restaurants should have proper ready areas for people with disabilities and servers trained to act properly around them. As they pulled out a chair for me, the waiter would have me sit directly in front of the door, blocking access to the restaurant. We had to shuffle things a bit so I wouldn't be in anybody's way and I finally got to order. I wasn't upset. I've been made to wait so often, that I don't see it as a problem anymore. I'm not saying that it isn't a problem, but after a while you just learn to be patient. It happens a lot. And after a while you figure that most important thing is to eventually get your order and not sweat the small stuff. It quite a realization: how much these days I'm willing to excuse- be it a restaurant that doesn't know where to sit me, a burger place with tables too high for me to reach or a bus driver who tells me to wait for the next one because she doesn't like to struggle with the lift. I think I've been too understanding. I've accepted things I never should have. But my companions- they're new to my perspective. Something tells me if they had to be in my shoes, they would get upset at every turn.
Sunday, April 13, 2014
Every Sunday afternoon I take the city bus and go grocery shopping. This week was no different. I boarded route 5 downtown that stops right in front of Publix. The plan was- as usual- to get on that bus again as it comes by every hour, and take it all the way around as it drops me at my starting point with a heavy bag hanging from the back of my chair. The one thing that was different was the driver. Every week a helpful, funny and kind man assists me on and off the bus and I have to say I look forward to catching up with him on Sundays. My dose of humor for the day. This time he wasn't there. And the problems started. The lady who drove it this time- to say the least wasn't very happy to have me on board. I get that to an extent. A wheelchair passenger requires transit operators to get out of their seat, lift a folding bench that has the straps and belts underneath it and secure me there. Getting the lift or ramp out also takes time, often requires to try getting them to work multiple times and gets the driver behind the schedule. It's hard to watch them struggle and not to feel like I brought it on them. But then, I'm a patron. I ride this bus and just like everybody else on it I just want to get to wherever it is that I'm going. This time, the ramp refused to fold back, the system wasn't responding to her pressing the button. Luckily for most drivers, with this model- if a problem like this happens, they can push it back manually from the outside and it's not that heavy to lift. Someone else did it for her and we were on our way. "I'm not picking up anymore wheelchairs today"- she said "No matter what happens I'm not opening that ramp again". That wouldn't work for me. There was only one bus going around once an hour. I told her that I still needed to go home after shopping and no matter long I waited it would still be her and her bus going by my stop. There were no other routes I could take and her bus was the only one in service. "It's between you and RTS [transit system company]. I reminded her that if she sees me and she can't pick me up, she's supposed to call the dispatcher and they may be able to send out a van for me. She said she wouldn't call them, because she reported the problem already. At this stage things got really scary for me. I had no other way to get home. I forgot my cell so I couldn't call a friend, a taxi or the RTS dispatcher. As I was leaving, I heard her arguing with her company on the radio to get her a new bus. It seemed like they were getting ready to bring one to her. She asked me when I was planning to get back. I decided to give her two hours to make the switch, although I'm usually waiting at the stop again by the time the bus comes back. Two hours later she came back. I heard her argue on the radio with the dispatcher again. The voice said that there was only one supervisor and that he can't get to her from the other side of town. She said that she didn't want to injure her wrist but she was told to work with the ramp anyway. I have to say- the whole experience ruined my day. I usually look forward my shopping on Sunday, here I spent two hours wondering what was going to happen next and kicking myself for not having my phone. And as she was strapping me in and commenting on her work conditions I realized that her problem wasn't really with me. It didn't make me feel much better, but her issue was with her employer and how mistreated and disregarded she felt. As I was getting of the bus in front of my house I said I was sorry she was was having a hard time and wished her a great weekend although she made my day quite stressful.
Saturday, April 12, 2014
One of the newcomers on my Foundation's Board of Directors was summarizing my life story on a conference call: "10 years ago he moved to America and had a lot things happen to him then, including getting hit by a bus". I suppose you could view the last decade as a series of misfortunes. Yes, I was hit by a bus when crossing the street at night and if the driver hadn't heard my screams from underneath when I was pinned down to road I wouldn't be here to tell you about it. Yes, that same year I rolled down a hill while on a Spring Break in Puerto Rico, fell out of my wheelchair and hit my head, ending up in the Emergency Room on our very first night. Yes, I was held at gunpoint when I was stupid enough to decide to go to Subway for a midnight meal. Yes, a tow truck almost backed into me when it tried to maneuver out of that small parking lot in my apartment complex. I was at a restaurant bathroom once and decided to throw myself into the wheelchair and I missed making a big dent in the drywall with my head. I guess I could write a book about my struggles with Immigration and my Law School. Yes, we could focus on the things that happen to me or talk about all that I accomplish and do for myself everyday. The way I look at these often scary events is that they made me so much stronger and I raised above them. I've been through it and now I'm here. And while those stories are often amazing to tell I don't really see them as defining my life. They're just that- Great stories to tell. I wouldn't know how to report on the great amount of fun nothingness I experience everyday. My life is not a whirlpool of dramatic events at all and if it wasn't for the 10 year backlog of experiences in America I would have very little to write about. My life the way I see it is the small things I do for myself everyday. The people I meet. The impromptu dinner I have with my friends. The work that I do, the things that I learn, the movies that I see. I don't want you to get the wrong impression- I'm not a sad, depressed loner who never has any fun, but things that bring me joy are hard to capture on paper. When I heard someone describe my life only through the most traumatic bits that are few and far in between I was surprised. Because this is not how I see myself. But at that moment I understood how someone who didn't know me could. But the truth is, as terrifying as some of the things happened to me were I don't even see myself as a victim there. I'm proud of I handled myself in the aftermath and a lot of it was character building that shaped who I am today.
Monday, April 7, 2014
I saw a familiar face today. One of the girls who put together the short video about me was passing through town. She wanted to say hi and introduce me to her parents. The entire family helped me finish my shopping, walked me to the bus stop and then took turns positing for pictures with me like I was some kind of celebrity. Their daughter told them a lot about me. But then- Cerebral Palsy was no stranger to them. Her sister with a more severe form of my condition passed away a few months ago. To honor her memory they've put together a nonprofit and seemed very excited to get started. It reminded me of James Klausner and his determination to do the same for his son. A nonprofit is not easy run and I hope that they have enough energy and motivation to keep it going. I've seen many fizzled out. If they were in Florida, I'd gladly get involved with them in some capacity. But they are in Georgia. Things seem to be going very well for them so far. Apparently, so many people pledged to donate to the cause that they qualified for the expedited processing of their 501(c)3 (tax exempt status) application and were awarded it in a month. I've been told that 80% of requests for a faster route get denied. I wish things were going that well for my Foundation! They asked me if I was interested in doing something with them if somebody drove me to Georgia and I cut them off by saying yes. I'm always interested. It seems like a worthy cause and they are good people. And hey, I've never been to Georgia. As we parted ways and I was waiting for a bus with a grocery-loaded bag hanging from the back of my chair she gave me a purple wristband. She wanted to give to me for a long time, but between single lines exchanged on Facebook from time to time it never happened. She no longer lives in the city and when she does pop in and out I don't ever get enough advanced notice to plan anything. But she really wanted to give me that wristband and I really wanted to have it. We've met up if only for few minutes between me getting a few boxes of Special K Meal Bars and mushrooms in the produce. As I've put it on my weaker hand, we turned it inside out to reveal the engraving. It said Toya Tuff. I've never met her sister, but I'm proud to have it.
Friday, April 4, 2014
Krystyna Janda, Polish Actress famously awarded at the Cannes Festival, caused quite a stir recently. She expressed a longing for the times when women were treasured by men. When it was in bed taste not to hold the door for a lady, or pull a chair or help with a heavy suitcase. She wrote a piece about the stronger sex after a man she was traveling with on a train refused to help after she asked him to put her suitcase in the overhead compartment. He did say he had a back issue, but what offended her was the fact that he didn't apologize for it. Criticism followed. Why should a man apologize for having a bad back?- some readers asked. For most- it turned into a discussion on gender equality. Why should a man assume a macho position if a woman is neither struggling or weak or elderly just because some antiquated tradition dictates it? Wasn't the women liberation movement all about having the weaker sex finally seen as equal, able to fend itself without a man's permission or assistance. Janda's stance came across as her saying- I need a big strong man to come and save me, because I'm not able to do it myself. It's not as if she tried to and lacked strength, she just assumed a man must do it for her and expected it to an extent she went online to do about it. "She just wants it both ways"- one user observes- "Equality when it suits her, special treatment when it's convenient".And it got me thinking about all the times that you could have accused of a similar attitude. I dedicate my career to promote disability inclusion. I started a nonprofit that's dedicated to promoting a positive image of people dealing with impairments. I wrote countless essays about how much I want to be treated just like anybody else. How the wheelchair is not really limiting me and with my skills, dedication, hard work ethic and drive I could compete with just about anyone. How I hate the word "special" in special needs. How I don't need to be pushed and most of the time I'll get there - even if it takes longer. Yet, I have to say- I didn't mind skipping the lines at the Universal Studios theme park because it allows wheelchair users to do so. It saved my family hours of waiting time and although I didn't have any medical condition that could have worsened if we waited with everybody else. I don't mind when I get to go into a crowded movie room when all the sits are taken. When I get a free upgrade on a domestic flight, because it's more convenient for the airport staff to sit me in the business class than carry me to the back of a plane. That public transit is either cheaper or free. That I can renew my passport at 50% off. Or that I have special sitting at a theatre. That if I miss a bus I get to have a minivan pick me up. That a lot of times when I'm waiting in line people invite me to get in front of them. None of those situations are in any shape of form emergencies related to my disability and yet- I enjoy them- I admit. And yes, I'm sure that there's a "his life must be so hard" justification for most of the times I get something extra and get singled out. And yet, I don't mind it. Nobody likes to wait in lines and with a 40 minute wait at Universal we would have done anything not to be like the others passing out in the heat. I don't mind the little perks, but I don't expect them. I don't have that "Move! I'm in a wheelchair" attitude. Some of my friends do- one of them even convinced a man at a cinema box office that the five friends I came with are there to assist me and should go in free. I'm pleasantly surprised every time it happens. Human beings are complicated. And I guess - since I can never be truly like others anyway, I don't mind being treated differently when it's something good- since I'm seen as different anyway.
Sunday, March 30, 2014
Polish mothers of children with disabilities made national headlines in the last few weeks when they decided to stage a protest and rally at the Parliament building. Among the angry- at the very least a very prominent group of parents dealing with Cerebral Palsy. They want more financial support, more benefits and to have the stay at home mom practically recognized as a profession, deserving minimum wage. Mothers with children sitting in hallways versus unsympathetic politicians make for many a Kodak moment. They're determined. They're distraught. But to me at least the matter is not as black and white as media choose to portray it. To me it's one part of a broader discussion about disability and should be viewed in proper context. I don't think that creating a public spectacle with children in the middle helps the cause. I don't think reducing disability issues to monetary demands is the right way to go. And I for one detest framing my disability as something that people should pity, a miserable existence in need of compassion. I think protests like that are a bit shortsighted- I would think at one point these parents would like to get an education, a job, be treated equally, as productive members of the society. They will face a lot of prejudice, hurtful assumptions and unpredictable reactions and having engraved this image of just asking for money in the public's mind will surely not help. Yes, every little helps if only one of the parents is working. But to me it's a temporary fix. A stay at home mom should only stay at home for as long as she is needed there, to help the child transition into rehabilitation programs and regular schooling. Money helps for the time being but the stigma is forever. And yes, not every child, not with every type and extent of disability can be independent. But I grew up with many special needs children around me never outgrowing the always present mother, confined within the four walls, relying on social services because they were never challenged and seen as people who could do more. I once was like those CP children in the pictures and I must say I'm conflicted. Just like many of the angry mothers my mom stayed at home until I was 14. It was time for the both of us. I needed to be as regular a teenager I could possibly be and she needed to find life and fulfillment outside of the house. I needed to stop being her "special cause" and she had to focus on things other than me. I on the other hand wanted to let go of all of the assumptions and lowered expectations and think of a future where I'm not cared for for the rest of my life. And this mission many years later led me to America. Poland that I left seems pretty much like the country I read about a decade later. Disability inclusion is still discussed in terms of financial payouts or employment training courses that will render the disabled useful. It's perceived as a social problem, a burden. Work places are offered tax incentives and benefits for taking upon themselves the brave enterprise of hiring a person with disability. Very little attention has always been given to creating an empowering, inclusive environment. An accessible world, where you can be as independent as possible. A time will come when a child wants more. Trust me, nothing is more frustrating that a feeling you get when when you want to set out to achieve your own goals, but the world around you is holding you back. You want more, but as at first you think it' s you, you soon realize that where you are simply wasn't created with people like you in mind. Money can buy you a lot of things. But it will not buy happiness or change how you feel about yourself and your condition Human emotions only get more complicated as we grow older. That was how I felt ten years ago as I left my home, my family, my country. I could have stayed and tried to silence how year by year I grew more and more unhappy, frustrated and lost. I could have said, it's nothing- everybody feels this way and how dare I dream of a different life- I got it made.But it seemed like perhaps it wasn't too crazy to see yourself as "something more" while my country saw me as a problem. It seems like not much has changed. To the mothers occupying the Parliament building I say good luck. I wish your cause was more about creating opportunities than money.But most of all I wish you ramps, accessible buses, elevators and sidewalks- your children will need them when they are no longer children. I wish on you- that universities and workplaces see their talents and true potential. That politicians that you ask for money today as well as strangers on the street no longer see them as charity causes and people with a hard life. A lifetime of respect is worth more than any spare change you get today. This may not be what you think about today, but give yourself five, ten, fifteen years and you will. Trust me, I know.
Wednesday, March 26, 2014
A recent Disney release sent me down memory lane again. It was "Saving Mr Banks" that chronicles, although some may argue distorts the story behind turning one of my favorite book series of my childhood, "Mary Poppins" into the successful Julie Andrews musical of the 1960's. The movie mainly focuses on the strained relationship that P L Travers- the author who was used to always getting her way and made herself into a proper, sophisticated English lady that wasn't fond of emotional displays, people or children for that matter, had with Disney and his ever commercial empire of joy as well as her difficult childhood in Australia. I'm less concerned with how accurate the movie really was. Travers who detested pretty much everything about the film, from casting to the cheerful tone and songs and was stubborn and difficult to work with in the film is shown to come around and is moved by the musical's closing act as she reflects on her own upbringing and loss of a father through flashbacks. But what I wanted to reflect on mostly, was what Mary Poppins meant to me when I was a child. I know that I've written before about how reading books shaped my childhood and I used to practically devour them growing up. "Mary Poppins" takes me to a period when I didn't do the reading. My mom did. She read to my brother and then to me, as her kids came seven years apart and she claimed that she loved getting to revisit those books and the zany, magical adventures they contained. When I was little, having my mom read to me was more fun than anything I could watch on TV, any place we could go or any game we could play. You just couldn't wait to find out what happens next. Getting comfy and waiting on the story to go on was pretty much a ritual and it was something you looked forward to. That's how my mom got my brother and me and any child in the family that felt that a book was too intimidating into reading- by reading to us first. It's funny how my favorites, the ones I remembered, where the three quintessentially British series- "The Borrowers", "Five Children and It" and "Marry Poppins". There was something fascinating about people having that upbringing. Being proper and polite, while sarcastic at once. Keeping up appearances, having afternoon tea, dressing up for parties- it was so different from anything I could experience in communist Poland which at the time was grey and sad. I connected to those books quite strongly, because while my mobility was limited, these people were having the most incredible adventures you can think off. Defying laws of physics and reality, the only thing stopping them was imagination. Imagination I had plenty of. And through my mind I could make my life and the world around me as fascinating as I wanted.
Just like Travers I was conflicted about the Disney adaptation. It looked glorious, the songs were nice and I was a big Disney fan. The problem was the Julie Andrews role had nothing to do with the book. I don't even care that she's too pretty and young for Mary Poppins as the book clearly makes her older and rather plain looking. The Mary Poppins I knew, and what made the character so unusual was that she was snarky, sarcastic if not harsh, distanced and cold. As my mom did voices when reading different parts it was all reflected in how Mary spoke to people and she if needed could cut them down to size with a mean look. Demanding and controlling and yet, you had no doubt that she cared for and loved the children. And that contradiction made her stand out from any other nanny story that comes to mind. The movie also made me reflect on how through reading my mom gave me memories. It's something I look back on 30 years later as I watch clips of that old Disney film. That's funny when you think about it- written words, somebody else's story, yet it's a memory and a fond one. Read to your children. Make fond memories and inspire them, ignite their imagination as mine was.