The woman from the Polish talk radio TOK FM contacted me again sometime before Christmas. She explained that she was doing a holiday special, to explore if and how people who left the old country celebrated the season wherever life has thrown them. What they remembered and what they miss. I must say it is not a joy-filled couple of weeks for me and I doubt I was the best person to speak on the subject, but still I agreed to a Skype interview. I explained that back home Christmas was the time you always spent with family. The food, the tradition, the togetherness. It doesn't have to be religious. So much so, that during my first year here I did all I could to be with my cousin, his wife and son. Because he was family and Christmas is about family. Yes, Polish traditions, the Christmas Eve dinner, the food, the dishes that every child back home recognizes, the Christmas tree, the presents. Yes, it's something that you grow to miss. And it's probably one of the few days in a year when you wish you could physically be somewhere else. The suffocating and ever present Christmas decorations that pop up the week before Thanksgiving used to really get to me. Something about the carols and the snow, being home for Christmas and the plastic commercial holiday spirit would make me feel so isolated and alone. It's not that I was bored or looked for a way to kill time. Having nowhere to go and no one to see simply wasn't a good feeling. And yes, you can rationalize it. You're here, your family isn't and this feeling will pass. But then, Christmas should be something you sleep through. So I celebrated with my cousin a few times. But him living a few time zones away in the middle of a Nevada desert doesn't really help us being in touch or making any kind of plans. So, I answered quite truthfully, that when I was in school I'd make plans to go somewhere because I had a few weeks off. Now I just focus on where I need to be and what I need to do the day after Christmas. Focusing on my Foundation and where I want it to go is more important to me than jet setting off somewhere so I can kill the blues and feel like I belong somewhere for a day. Yes, when there was a Polish group in town I felt a part of I'd celebrate with them, but there isn't one at the moment. I'm sorry my life isn't glamorous enough, but I'm not too concerned. Ten years into this journey that is America and you learn to develop a thicker skin about these things. And when I was revisiting my inner Grinch or perhaps realist, another transplant from Poland was having her first Christmas in America, four hours plus of a car drive away, down in South Florida. Jazzy, as we came to call her became the creative Director for my foundation earlier this year when she responded to the volunteering ad we posted on Linked In. She didn't know I was Polish, she says she doesn't even usually look through opportunities yo give her services to a cause. But something clicked. I wasn't even the one who picked her, isn't it amazing how sometimes things have a way of working out? Though we met randomly we speak almost every day. And we have more in common that we ever imagined. So I told the radio journalist to speak to her next. She has that enthusiasm and determination a she was planning to have a traditional Polish Christmas Eve for all of her American friends. And I'd guess it be fun to see the hay under the table and the traditionally served carp and all the vegetables that she had to hunt for in specialty stores. And of course I was invited. But she lived four hours away. The journalist asked me if I was thinking of going. Yes, I was thinking and I wish I could have gone. But I knew it didn't really make much sense for me to attempt it. My life isn't some Christmas TV show special where the character makes it back home for the holiday dinner. There's a lot to do the day after, back home. And moving my causes further means more to me than eating herring or borscht sharing a few laughs or carols.
Monday, December 29, 2014
Monday, December 22, 2014
It was 2007. Just a few months prior UF students were rallying for me with signs in the middle of the law school courtyard. We were making a statement, raising awareness of the controversial practices of the LSAT administration that were not fair to individuals with disabilities. The message was clear- a person is not a number. I fought hard for my place in my second Florida law program. I've met with anyone and everyone who could have influenced law school decision to prove my worth. I campaigned hard for myself to have them that I want this, that I'm willing to do whatever it takes to get there, that I'm ambitious and I'm skilled, that I have what they're looking for. That their decision before was wrong and I was just as good as everybody else. I was so focused fighting for my own cause that I didn't stop to think what would happen if I actually get it. So when it did I was left with doubt. It was probably just me working myself in my own mind, but for the first semester or two I put some extra pressure me. I felt there were people at the school who felt I didn't deserve to be there, that I was unworthy. I also wandered what some of the instructors thought of me being there. They had to had known who I was, it was in the papers. I also felt the need to prove myself to the people who accepted me that this time around they made the right decision. Just a few months before, the Dean made some pretty harsh remarks to the Gainesville Sun. Who knows who thought what? I could say if I got here, does it really matter how? But I wanted to prove to all that my cause was just, that it made sense for me to champion it, that for the lack of a better word, I arrive vindicated. And a thought crossed my mind, "What if I'm not a success here?", maybe I don't really "deserve" anything. Maybe I'm not as good as I think. I never thought what was probably true, that nobody really cared either way, that everybody had a story and all that mattered was where we would take this next. It made me work harder, but also second guess myself at times and it sucked plenty of fun out of the experience. It wasn't until my third semester that I fully came to my academic prominence. I was named to the Dean's List twice in a row and I got a couple of book awards- highest honors in a class. What it took was time and being able to relax and let go of any actual and imagined expectations. I remembered this, as I met with one of my younger friends- who just started last semester at one of Florida's law schools. He was frustrated. Some of his grades were not as he imagined, why could he have cracked it? He's a smart guy and he's used to being on top of the class. And I've had a few C's, well, C+'s on my record as well. Some of those were worth as much as B's or B+'s with some other professors. I appreciate them still for the learning experience. Just because you don't get a top (or second to top) grade doesn't mean that you're not good enough. Sometimes it means as little as performing worse than somebody else on a test on a given day, simple as that. On some other tests, on some other days, you'll perform better. You're in a class with some other bright, talented, hungry people who are just as good as you. And five, ten years from now it will not even matter what grade you got on some insignificant exam. You get good grades, you get worse grades. But all that matters is that you get through it, finish, pass the Bar (for which the law school doesn't really prepare you for either) and you try to have some fun while you're doing it. Being able to transfer in 24 credits from my other program saved me a lot of money, but meant that I would not have that first year bonding experience with others in my section. I wish it's something I've known at the time. I was eager to be done, that I let a lot of things pass me by. Don't push yourself too hard. Don't set impossible standards that nobody can ever meet, don't drive yourself insane. You're already here. You have nobody to impress and nothing to prove. Enjoy you're life, you have only one.
Wednesday, December 17, 2014
A few weeks ago I posted a question on Facebook aimed at my attorney friends. What do you think about disability accommodations? Do you see them as reasonable modifications that allow people to function? Do you see them as something that is fair and just, that promotes inclusion or at its core do you see it as special treatment. One of my friends answered with one word, "Semantics". On one hand I can see his point. If disability legislation (ADA, IDEA, RA take your pick) is law, what difference does it make? It's now part of our system, a part of our toolbox, what is the benefit of asking "why". We don't question a lot of our other laws and how they came to be. They just are. And if I wasn't personally invested in the matter, I'd say : those are the standards that I look at, those are the criteria, you meet them or you don't or you can make this or that argument and those are the anticipated outcomes. And on a different note: Does it matter how you got here when you're already here. I however am not just an attorney. I strive to promote inclusion and understanding. Yes, it helps that if I choose to go that path, I don't have to care to think what people think. The law is the law, it objectively exists outside of what people do and do not get, feel is right and justified. That I don't have to explain myself to anyone or seek validation. That the question I ask is "Is there a ramp" and not "Do I deserve a ramp". And yet I think, as much as it pains me to say it- that what people think matters. For a number of reasons. Firstly, I believe that the reason people dread ADA compliance - that they treat it as something the just must do, hiding things and hoping to get away with as much as possible is because they don't see how it affects other people's lives (and in turn their own bottom line). Others are likely to include you if they understand your journey. If they're inspired by your struggle and form a connection on a human level. Secondly, I say it's a matter of respect. It's easy to dismiss someone if you think they've gotten an easy ride. I can't speak for other people, but I know I worked hard to be where I am today. I did have help along the way in places where my disability limited me beyond my control. If you think it was to give me more than just my fair shake you undermine not only how I got here, but where I am. And it's hurts, having to look at people who smile and nod and underneath it all still assume that some bit of it is undeserved, like there's some kind of a trick to it. Like it's not your place, like you shouldn't be here. And one person who you shouldn't explain yourself is your attorney. Someone who should be unequivocally on your side. And I know as attorneys it's our "job", but as I human being I like to know how you "feel," how much you identify with a particular position and how much you "know", because it relates back to a very human experience, understanding. I don't think it's semantics if I ask, do you believe me, because that's what it comes down to. One thing that could ruin the experience is that lingering doubt, deep, deep down underneath all the laws, all the cases and all the political correctness. And this is why it matters.
Sunday, December 14, 2014
It was a few days before Thanksgiving, when after a dinner with friends we decided to go back to my place and watch a movie on Netflix. "It's toasty in here"- and he was right. The thermostat was showing 83 Fahrenheit, about 28 Celsius, despite the system set to 76F. The air conditioning was turning on and off and appeared to do something or at least make a sound, but nothing was cooler. The next day my maintenance staff came back with a verdict. I've had a Freon leak somewhere and they couldn't touch it without a specialist handling it. Another twenty four hours later the news was even more dire. My system was so old that it couldn't simply be fixed- the whole thing needed to be replaced/ I knew they wouldn't get to it until the following week. That weekend was the most celebrated family holiday in the American calendar. Christmas here is just the one day, nobody does anything for Easter, but Thanksgiving, that starts Thursday and goes well into Saturday and Sunday. Luckily for me I read up on Freon and it wasn't poisonous. It could however suffocate me in the right concentration as it pushes out oxygen. 24 hours before the big holiday I was given a window unit. A small, yet incredibly loud machine with a pipe going through the open window. I'd serve me until Monday, only waking me five times a night. I felt like I lived in one of those older college dorms without a proper installation with boxes affixed to the outside wall. It wasn't a great week, but at least it kept me cool. And it really brought me back to my first apartment in Gainesville. Oddly enough it was managed by the same leasing company as where I am today, but that was their low end "affordable housing" segment. It only had AC in the living room and it seemed like a huge airport style unit. My new roommate who I've just met at the time had to sacrifice our privacy in order to keep cool. With all our fans on and doors open, which was a strange thing to do with a virtual stranger we were able to maintain some degree of cool. Of course we couldn't unpack as pest control was spraying all of our apartment every other day. The roaches seemed to have taken over and they were not about to be evicted. We had to gather our things in the middle of the room. The wheelchair ramp I was promised upon signing turned into be being able to get a ramp if I hired a contractor and pay for it. Needless to say that place was an experience and as close as I've ever gotten to living in a dump. It was an experience- and all that stress certainly didn't help the then-forming relationship with my roommate. The maintenance and management of where I live ten years later is of course much more helpful, but the place is far more expensive. But I have to say, what happened over the following week brought me back to those experiences from years before. Whoever was working on the replacement of the AC unit Monday and the unrelated but schedule inspection and replacement of my sprinkler system Tuesday seemed constantly surprised and baffled by what they found in the walls. There was a lot of drilling, plenty of saw action and a lot of frustration, that things either didn't fit, didn't go where they supposed to, that there wasn't enough room. The people dealing with the fire system- and again I think it was poor planning on my complex' part to schedule all that work in my apartment they after day, with strangers coming in and out, which of course had it me stay home and watch it. As they made holes in my ceiling not only was there a hole there until the following Monday, but they didn't cover or move anything from my oven or my floor. For days I wasn't to keen about getting into my kitchen to get to the refrigerator. The drywall dust was everywhere, I didn't want to track it on my walls and why should I have to clean it? After I complained - somebody came over and at least vacuumed the floor. I was less than impressed with how both issues were handled, that they were attempted one after the other and then left and disarray, that hardly anybody noticed that it was a struggle for me, that no one cared to properly apologize and make it up to me. Something I'd expect from the high end of the apartment portfolio.
Thursday, December 11, 2014
Sunday, December 7, 2014
I can understand a lot. I know that sometimes you're just having a bad day or you're simply not in the mood. I can see how stopping your bus to load up a wheelchair can be pain. It takes time and you're on a schedule. And if you have one of the models with the lift in the back- forget it- the fun just begins. From struggling to line up yourself properly and close enough to the sidewalk and remembering to properly power it up in the front and in the back to make it work. Don't forget the key to open up the controls. And I thought I've seen it all. Drivers who rolled their eyes at me or told the person they were on the phone with that they need to "Load a goddamn wheelchair" as they saw me roll up or even never uttered a word while they were loading, unloading, strapping and unstrapping. I've seen unruly passengers. Some loud, others appearing unstable or threatening. I can understand a lot, but for the life of me I will never understand what happened Saturday night. I was waiting at regular spot for my night bus after a movie showing on campus. I've never ridden with this driver before, although I did recognize him. A few times he either never stopped for me or simply ignored my presence and drove off when other people got off. I should have known this may be not the best idea just by looking at his angry facial expression as he was coming up and how aggressively he was maneuvering to get close to the sidewalk. As he opened the door he started cursing, although not at me, just quietly to himself. And shook his head. He made sure it was clearly visible that he was not happy that he had to stop for me and load me up. Mumbling, making faces, As if I was some kind of punishment or flagged him out of spite. And with every minute, as he had to turn things on, get the key, get the controls for the lift opened, it was only getting worse. And I only wanted to gdt home. Preferably quick and in one piece, he just happened to be there. I've never seen a driver so enraged from the moment he saw me until he drop me off. He seemed furious. And as he was expecting trouble loading me up with the backloading lift which is complicated to power and sometimes gets stuck at that stage he got me in without a problem. In the passing he explained that he hates this bus and they always give it to him- but then all the other drivers are in the same boat. Just ask the driver that made me wait right before him as he couldn't power his. But this man was just very angry. Angry and loud. While it seemed that he was mad at his equipment, as he waving his arms I wasn't sure that this emotional behavior wouldn't get out of hand. He's cursing and yelling and I don't feel safe. I'm strapped down, couldn't get off the bus or wait this one out if I wanted to. As he had a hard time activating the lift at my stop, more emotional outburst followed. As it turned out it was his mistake because he forgot to do something, but at that point he started to slap the box that housed the lift controls. It wasn't at attempt to make it work. He felt blinded by range and wanted to blow off steam or punish the bus for not listening to him. It reminded me of how one of my friends when he was helping to carry me up the stairs lost his grip and felt so frustrated with himself he punched a tree. I wanted to just sit there and let the driver do his thing.. I wasn't sure at some point he wasn't going to turn around and slap me. He was at the point where I wasn't sure if he'd be able to stop himself before he took one step too far. Because everything up to this point only made it louder and physical. I was not only immobilized, but the only rider on the bus. I've never seen a driver so angry, walking back and forth, pacing, wiring himself up and in a way, I'm his prisoner. He doesn't know how to drop me off, so filled with anger decides to drive me to the end of his run, when some other driver shows him how to operate lift. He then drops me off on his way back. A lot of things happened to me on RTS buses but I've never felt this unsafe before. I felt I was locked in a tiny box with an unpredictable man that was flying off the handle. It was beyond the point of trying to talk to him or asking him something. He was not someone at that point you can reason with. Had he come at me, I'd have no way to stop him. And that's a feeling I wouldn't wish on anybody.
Thursday, December 4, 2014
This was a topic I was originally going to ignore. After all, I'm no longer a child and through the events that shape me how an adult experiences disability is far more interesting to me. But I kept getting links to articles and fundraisers involving "inclusive" toys and "inclusive" playgrounds and that made me think of what it was like for me when I was young and interacting with the world through playtime with able-bodied friends. Maybe there's a better way.. A lot of those stories share an old too familiar beginning- a parent of a child with a disability didn't like something they saw and it inspired them to do something about it. I have to say that I really like the word "inclusive". I prefer it over "accessible" though to some it may just be semantics. To me it suggests- at least in theory- something that all could enjoy rather than a thing that was designed or modified so a person with a disability could use it. I remember what it was like to not be "included" and I've written about it a number of times. Kids who walk and run get away from you, because you just sit there. And yes they say they'll be right back and most of the time they would be back at some point, but having experienced the fun and laughs you'd never be apart of. Sometimes it was as if a whole secret world existed I never had access to. My mom was smart enough to try to steer my friends and how we played to put m in the center for as long as I was little. But as kids grow older they do more and more "stuff". "Stuff" that involves running and biking and digging and swimming that you're less and less connected to. You're able to rationalize it. The'll be right back and you can't walk, what did you expect for happen. You know well that you have a disability, that there are things you can't do and it's not even that you're angry and you're telling yourself "why me". You just don't like it. You don't like how it excludes you and how it makes you feel about yourself as you wait for others to remember to find you again. Yes, you were born with it. Yes, you're used to it in almost every other way. And you grow to understand that you can't do certain things, be included in activities. You sit and wait, because there's no other way. And then you can't be angry because how can you be mad at something beyond anybody's control. So you sit and wait as other kids play and for the most part, you get used to it- you're fine. But maybe there can be more to life to settling. Just because you know and you understand doesn't make it fun Maybe there's a way a child can be included without being either made the center of attention or forgotten by the group. Maybe some creativity and yet again, parental determination can offer a better childhood experience. I tried to think of a time I felt like this for the last time, because it is a feeling that stays with you. Originally I was going to go with "I was 19, visiting America for the first time and we were exploring Disneyland for the first time. My family then got to experience some of the more physical rides and activities, marked on the map as wheelchair unfriendly. And I got to watch some of them." Would I really want to try the monkey bars or whatever it was? Not really. But you're left with a feeling that you can't do it while everybody else gets to. But in reality the last time I had this feeling I was 25. It was my first Spring Break and I went to Puerto Rico with a group of friends. They then decided to spend a day in the rain forest. Wheelchairs and the jungle? Forget it. I don't think I would even enjoy being around poisonous plants and venomous animals. It's not that I wanted them to stay either. But being alone on the terrace of our hotel, reading a book and playing solitaire gave me that old feeling like I'm missing out on something, like I'm missing out on life. This got my thinking. Maybe this feeling doesn't have to a part of a live with disability just because we accept it, just because we can explain it to ourselves and rationalize it. Maybe "You can do more" starts with your childhood? There's a few links that I'm trying to find to share with you, but why don't we start with this. This is from my native Poland http://teespring.com/GoBabyGo-Nation, while here's something from the Madison Claire Foundation about aa accessible playgrounds project. https://givemn.org/fundraiser/Give-to-the-Max-Day-Lock-Up-for-Madisons-Place---Team-Leading-Edge-54539b8ab2223 Please note that I know neither personally, so exercise caution when giving money to any cause.