Left behind

As I think about what aspects of being in a wheelchair really get to me sometimes I have to mention my ultimate nemesis: flights of stairs. It's not that I want to be able to run up them one day, but that they often me feel isolated and unwelcome with their mocking presence. They're just there, I can't  get around them and there's nothing I can do. When I was a child my mother would me in front of a store in my stroller or later - wheelchair- as she went in to grab a few items. A lot of my childhood seems to involve me waiting outside for someone to be done what they were doing alone with my thoughts. Stores and public places in both Warsaw and Budapest had stairs everywhere. If it wasn't a full flight, an elegant three steps would lead you up to the door. My mother often struggled to pull me up there, but every time she did that, she had quite a work out. Having me walk up a floor by supporting me under my arm was in turn as exhausting exercise for me. A lot of times, if my mom thought she'd be done somewhere quickly, she would think it's really not worth it to get me up there. "I'll be back in five minutes"- it's probably the most repeated phrase of my childhood,  meaning again that I would have to wait outside.  And the thing is a  lot of times I wanted to go, I wanted to see, I wanted to experience something. Yes, you understand why you must stay, because you understand your limitations and reality clearly. But it doesn't make you feel that much better. You only learn to come to terms with  the best you can. Luckily I was a child with a big imagination, so the breeze on my face or the sound of the streetcar would inspire a journey inside of my mind.  Often all I would get is a comment on how I would not have liked it there, that there was nothing to see or that the selection was poor and it was actually a waste of time. But all that mattered to me is that once again I was left behind. In elementary school, when something happened and my classmates had to leave the room unexpectedly for some reason (because there was a show or an assembly) and the teacher felt it was too much of a hassle to move me, she'd make a friend or two behind so I wouldn't be there alone. It felt like assigned to them. They wanted to be there as little as I did, as we spend our time playing "Hangman" or Wheel of Fortune". There's a place in Gainesville called the Grog House. My friends seem to like it. I've never been. I'll  never get to go. There's an impressive flight of stairs, about half a floor's worth leading to the door. And I have to say that I'm bothered that there are places that  can't easily get to myself. To me it's more than just physically getting somewhere. It's the laughs and the joy my friends have that I don't get to be a part of.  And it's all of the things I don't get to go, see and experience. Sure, we can all go to places that are more wheelchair friendly, but having to compromise to accommodate feels a bit like leaving a friend behind so I don't feel lonely. And yes, when there's a place that I can't get to I feel unwelcome and unwanted there. I guess you could say that accessibility to me is in general more about how I feel about the world including me and me in it than physically getting places. That's why my foundation's motto is "Empowerment through inclusion".The better the world receives you, the better you feel about yourself, the more you can do. And as far as being left behind goes. It sometimes still happens. I could be at a venue that has a pool table or something else going on on an upper floor with no elevator access. I often hear: we'll only check it out for a minute, and for the next twenty I'm alone in a crowded room full of strangers. As much as I'd want to see what my friends are up to I can't fly over a flight of stairs. Thankfully I'm smart enough to find things and people to entertain me.

Too high to reach.

What are some of the obstacles you experience in everyday life? What is the most annoying thing about being in a wheelchair? As we try to prepare one hundred questions that serve as building blocks of our "Tell us your story campaign interviews I wonder how I'd answer these. The answers may surprise you. For me it's not about running or walking, jumping and dancing. It's that many things are literally beyond my reach. Sure, I can ask for help when I  need to grab something from the top shelf and I don't mind doing so. But finding a person to ask is often a challenge. Figuring out how to get their attention is another thing. And from time to time their response surprises me. Consider this story from last Saturday  night. When a package larger than the envelope arrives here, my postman puts it in one of the larger locked storage boxes and puts the key in the mailbox. He knows that I'm in a wheelchair so he tries to put in one of the units within my reach. Imagine my surprise when I find that my item is for some reason in the very top one. No amount of stretching would work. I waited for a bit,  thinking people would be coming back from bars soon. And when I heard voices I'd stop whoever was there to help me. Yes, I could have just go home and ask a friend another day. What can I say? Putting things off like that knowing there are things waiting for me that I can't get to makes me feel really defeated. I really wanted it that night. I saw a group of girls walking by and I asked one if she could help me open that lock. After all we were neighbors. After all it would not even take a minute. She shook her head and said, No, Sorry. See, the worst thing about asking people for help is not that you feel like you can't do things for yourself. Is the fact that they may say no. They have the power to ruin your day. To make you feel embarrassed to have asked in the first place and a bit angry at both yourself and them. Perhaps she was a little drunk to understand what I was saying. Maybe she thought I was asking for change. For a while after I replayed the exchange in my head, thinking what exactly happened. Some 20 minutes later another neighbor was walking down the stairs leaving the complex and I asked again. He had no problems helping although we never had before. Sometimes I wish I could stand up only to reach the things I need. When I was waiting for someone to walk pass our mailbox I was getting frustrated with myself, my mailman, the mailbox for being so mockingly high. For a minute there I even thought about figuring out how to use my Peto training to climb my wheelchair and kneel on it.  When I go shopping, the brand of yogurt I like is always on the higher shelf. Quite frankly most people there look like  they don't want to be bothered. Trust me, as soon as they come up with a wheelchair that can lift the sit up a few inches I'll be getting one. Perhaps then I could have an eye level interaction with people without them looking down on me. Literally and figuratively, perhaps.  

Let us teach you.

After my usual Wednesday night at the movies, I decided to go for a burger at one of my favorite diners. From the moment I've set by one of their booths (although my wheelchair barely fits in its opening) everything happened quite routinely. They moved the napkin holder from the far end of the table for me, because I would not be able to do it myself, brought me some plastic forks, helped me with my drink and served the food to my table. They know me well, so I don't have to ask. It feels like a dance or a ritual before I get to eat my meal. I get a very pleasant experience and I'm always willing to leave a tip. Not having to ask a random patron at the next table to move something for me makes me feel much better. There isn't any shame in asking for help and I do need it with certain things admittedly.  But I do smile when somebody thought of those things for me, before I had to ask. I was of course the one who told them what I needed, educated them if you will on how to approach and deal with a customer in a wheelchair. Since  they realized what I struggle with they just do it and rarely forget. I guess it's difficult for most people to put themselves in a position of a wheelchair user. Quite frankly they never needed to. Many places, although wheelchair accessible are not particularly wheelchair friendly. Even the burger joint that I frequent and love wasn't equipped with the people like me in mind. Between the narrow booths and the tall tables and bar stools that are too high for me, my sitting options are limited. Then, the condiments, spices or napkins are out of my reach. But as soon as the people working there understand what the problem is they are more than willing to help. More often than not I deal with restaurant hosts not quite sure where to sit me. While my companions get understandably annoyed, I tell myself that person never had to deal with something like this before. Nobody taught her if you will. If there only was a course that you can take if you are a clerk, a barista, a server to understand the needs and problems of a person with disability. Not about what the law says and what the ADA standards are necessarily, but to be able to proactively and productively assist people with special needs. Not knowing how to help is one thing, but sometimes being in the way does more bad or good. I looked around as I was having my guilty pleasure of a dinner and I thought about all the places and people I have trained if you will to help me get what I needed. Teaching people has been on my mind ever since my Director of  Resource Development brought up the idea at our Foundation's meeting last Friday. We need to start educating establishments on how to have their workers behave in these situations. We are now working on curriculum, that we plan to finalize by the end of September. My first thought was: How would we even get started? I don't know how to teach people about disability. I don't want this to come across cheeky- but then I realized that I've been teaching people about disability all my life. Simply just being around me they started to understand my limitations, how I approach obstacles, what I need and what I can't and cannot do. As they saw it, the took it with them and thought about it some more and developed a greater understanding. I think that would be our goal, although on a greater scale- to get people to see and think and care.

Where's my passport?

 Last week I realized that it's been almost three months since I made the long and exhausting drive to South Florida to apply for my Polish passport. I also realized that three months was the amount of time by which I was supposed to have the document in my hand and I was assured I'd get it much sooner than that. Still, I didn't have it yet. I certainly didn't want to reapply and travel somewhere for it again- it took time to plan and it was expensive, the passport was already  paid for and this time I would probably be forced to fly to the embassy to fix it. As weeks went by I wondered- Will I ever get my passport? What happened to it? I grew more and more impatient. Without a   passport, I can't leave America. If something happens, I can't go to Poland. I felt stuck. It's not until next year that I'll be eligible to apply for American citizenship. Having waited three months I was joking around with my Polish friends, that I'll probably get my American passport  before I get my Polish one. I needed to get to the bottom of this. First obstacle was getting in touch with the Polish embassy in DC. They maintain odd hours. On some days they're open  primarily before twelve, on others they see customers  from one to fours. Sometimes you call and nobody picks up. Their operator gave me the direct number to the department and advised me to try it for as long as it takes until someone picks up. Finally, a man did pick up. I was anticipating problems again with getting the information on my passport over the phone, but this time there were none. He gave me a tracking number for a certified mail and advised me to hash it out with my post office. As it turns out, this time the Polish Embassy wasn't entirely to blame here, although I still find it odd, that having all these information and give how essential and expensive a Polish passport is, nobody inquired into the status of the package and why weeks later it still sits undelivered. My passport was sent to my old address. I had set up mail forwarding a month before, but somehow it wasn't intercepted. The mail person attempted to deliver it once, left a notice on July 5th and there was no further action. Two weeks after the envelope should had been returned but that hasn't happened either. As it turned out, for some reason, six weeks later it was still sitting at the Gainesville post office. I tried to set up redelivery via the main USPS 1-800 number, but as usual those requests don't seem to do anything. I had a delivery scheduled for the next day and nobody came. I had to call the Gainesville post office directly, speak to a supervisor and he was able to send it out with my postman that same day. I wasn't sure if he'd actually be here and at what time. By 2pm I have waited all day and I started to lose hope. It's a good thing that I cancelled my 2pm meeting because he did show soon after. He did explain that he never saw this envelope and he would have remembered. He was off the day someone attempted delivery,
I like my postman. He knows me and always makes sure that I get my mail. Even with the mess and confusion that my turned out to be he always made sure that the envelopes addressed to me always end up in the right mailbox, even if the post office forgets to put the little forwarding sticker on them. He knows to wait for me until I get to the door. Rest assured- this text is not a criticism of my helpful postman, but of the institution he works for. Unanswered questions remain: Why was an unclaimed item sitting for six weeks at the post office? Why didn't anybody attempt to deliver it again? Why, with mail forwarding set up the post office was unable to find me? Is it the perfect combination of these two factors that contributed to this mess? Luckily, after all the waiting and the worrying the passport now rests on my desk.

Who's at my door?

A few weeks ago I heard a knock on the door. As I opened it a man started to tell me a story. Something about my next door neighbor and that his girlfriend took his car, leaving him without gas or money. Truth be told I've never seen him before. He didn't look familiar at all and few days later I confirmed with people at my leaving office that the unit next to mine was still vacant. Luckily I rarely keep cash in my apartment at all, so I didn't have to lie when I said I didn't have any money to give him. At first I understood his tale as wanting to borrow a lighter, get a cigarette or get a ride, because those things appeared there as well, but I couldn't accommodate him as I don't drive and I don't smoke. Right the and there I got a sense that he doesn't live here at all, but I didn't feel that I was in any kind of danger. Truthfully if he wanted to he could have forced his way inside and push me in. It's funny how safe I feel in that little gated square in the middle of downtown that is Arligton Square. With homeless people, bars ad drunks all around us, you'd think that more dangerous things would be happening here. My complex is - mostly because of the location- one of the high end properties in town. And it's relatively calm. Last weekend Jehovah Witnesses were going around the complex with their good word, but I just waited it out when I heard them knocking. Once a homeless lady was going door to door asking for money and water and another time a man tried to sell me subscriptions, but situations like that are very rare. When I shared my story on social media my friends reacted saying I should be more mindful  and take a better care about myself. My friend Matt suggested that I should by an electronic device  he found on Amazon, a camera  that helps to see who's at the door. I felt it was all a little excessive, but I went with his advice. I grew up in Warsaw, where you couldn't put too many locks on your door and you'd put layers of metal around them to make them thicker. We also had a gate in the hallway, an intercom with locked main entrances and every floor and a gated balcony. In Gainesville apartments for rent have typically one lock. And we feel safe. I grew up on American movies where an apartment with a single tenant would become a scene of some scary foul play, enhanced by tension music creeping in. As a child,  I always felt that living single would be a scary experience for me with every unexpected sound keeping in my toes. When I was seven I would look behind the open door before entering a room to make sure no one was hiding there. But I grew out of it. And I like my apartment. My friend was right- my peephole was too high for me and if I tried to lower it I'd be seeing crotches, not faces. This thing takes a picture of every person ringing the built in bell. Removing the old one, that was a bit painted over was a bit tricky, but I asked my friends to do it and they brought tools. The camera has a cable that goes through the hole and connects to a mini  monitor on the other side. Replacing battery requires taking a bit of it apart and it didn't glue to the door as well as it was supposed to so it's hanging a bit from the wire, but for 40 or so dollars I got my money's worth. I have a clear indication of who's at my door and when and I  have something louder than knocking telling me to get to it. It's convenient. I don't know if I feel safer with it, but I know my friends do- about me.

How to offer help?

A woman came up to me yesterday as I was rolling up a steep curb cut. "I know that you're perfectly capable of doing it  yourself"- she said- "But I would like to push you up". I didn't protest, I didn't object. I had a trash bag full of papers on  my lap. It was half torn and I was risking it ripping right open and some sensitive mail ending up on a sidewalk. She helped me with the steeper, twisted one as I held on to the bag but I got the second one, more regularly shaped all by myself. She acknowledged my fight with the one she insisted to assist me through that I take on every day by saying "Aren't steep curb cuts a pain?" Yes. Yes, they are. What I liked about her approach is that she acknowledged my independence and ability before asking me if I needed help. And getting on that sidewalk really seemed like a struggle. It's completely different from the reactions I get whenever I'm on campus. I could be on a flat surface just rolling my own marry way when a group of girls ask me if I needed help. The frustrating part for me is of course when people assume that I need help just because I'm in a wheelchair. The other reaction is "Do you need to get somewhere/find something" when I'm in a building I've been coming to for the last ten years. It's pretty frequent for, who I assume are foreign visiting parents who just come up and start pushing me without any explanation. It's pointless to even argue with them, they'll just do what they will and I thank them when they're done. Don't invade my personal space, realize that I not only can do it doing it myself but have been on my own for quite a while. Don't assume I'm lost or in trouble when you see me out. Some people approach be by saying "Do you want to give your arms a break?" while complimenting my strength. My friend Matt, now in his mid 20's will be visiting Florida this month. It made me remember precisely how we met. I was rolling up the ramp to the student union building,  like I did every day, eight, nine years ago when he approached me. "I see you here often"- he said- "And I really wanted to push jump that hill". I remember liking the fact that he didn't say that I was "struggling" or that he felt I needed help. He phrased it as if he doing it for himself and I thought what a well behaved young man. We are Facebook friends still today.

Ten years

Last week a student from Poland asked to meet me. I was hesitant to do this- the older I get the more uncomfortable I feel as  the  Gainesville one-person welcome committee, but still I agreed. He started the year-long program I started my academic career in America with. And as we talked I slowly realized that ten years ago exactly I was in his shoes. I remember being open and excited to meet people and visit places. My big adventure was just beginning. I have to say I envy him a little bit- discovering Gainesville for the first time, everything a possibility, a book unwritten. His dream to move to New York to practice law- a goal shared by most if not all LLM students after the program finishes sounded so familiar. I remember studying for the New York Bar with other international students with a shared  set of BarBri review materials, a disaster waiting to happen. Let's just say you need more than one book for a group of eight and no amount of xeroxing could make up for it. But we were set in our ways- we were planning to be New York attorneys and failure just wasn't an option. That first time- it should have been. I even remember one of our Chinese friends praying we'd miss the plane and that way we wouldn't have to take the exam. But I remember that first year. Experiencing America, absorbing the views, the colors so vibrant, the climate. My first shot at independence. I came here with high hopes. To live through something, to find my place, to make life-long friendships, to feel accomplished, to feel loved and perhaps find love. My life didn't exactly resemble an American TV show based in college but I made it my own. Can you believe it's been ten years already? Ten years ago, "ten years" would feel like a really log time. Who knew I would not only end up staying but getting one more law degree. Who knew I would still call Gainesville home rather than getting a sweet bachelor pad in Manhattan. Who knew I'd have the strength to stand for myself on the quest to get back into law school and then face immigration in what proved to be an exhausting path to get my green card. Who knew I'd be an attorney in Florida and DC, neither State was in my plans. The last ten years didn't quite end up looking like a dreamed, but I'd  take them in a second. The moments of joy, fun and content as well as the stress, the fear, disappointment and loneliness that all made into who I am today. The conversations with strangers. My springbreak in Puerto Rico. My Holidays in Vegas. All the White Mochas. The movies and friends made at the Student Union. As he said, I wish I went to college here, I remember my struggles to stay here for an extra degree a bit longer. There's so much to do here- he said. And I agreed, there's so much and more. I was hit by a bus once but I survived to tell the story. Perhaps I'm not like I was ten years ago. Who'd believe I'll start a Foundation and dedicate every waking moment worrying about it. No (big) regrets. Yet I'm still excited for the future and waiting for my big break.

Shut your lips.

It happened again.  I was rolling up the wheelchair ramp into the bus. I was pulling myself up and yes, struggling quite a bit, because that thing was steep. As the driver was strapping me in, he looked up and said: "When are you gonna get an electric wheelchair?". If I was rude I'd say, "None of your business".  I really wished he kept his comments to himself. And so I begun my routine explanation. How I prefer manual over electric because it's the most exercise I can get in a day, that I enjoy how light it is, the sense of control it gives and the feeling that I'm doing something with my own muscles and not just sitting around. Bottom line: I chose what works for me. It's not up for debate and needs no explanation. Over the last ten years I realized how often people would ask me inappropriate personal questions or make intimate comments on things that were none of their concern. It could be that being around a person with disability is new to them. It goes without saying for example that you don't say certain things of a different race, color of gender. Sometimes precisely because they're of a different race, color or gender, sometimes- because they are a stranger and there are things you should not talk in a certain way to a person you don't know. And you  shouldn't say the first thing that comes to your mind just because it popped into your head. It seems that those mechanisms that make you shut your mouth before you say something offensive have not been fully develoo when talking to people with disabilities. Just because you're curious about something doesn't mean you should get an answer. It's seems that everything within the space of my four wheels is fair game. My posture- why am I hunched  over so often? My spasticity, my strength, my exercise routine wit the advice that I should exercise more. My legs and can I move them?  The one I get the most is "What happened to you" sometimes phrased as "What's wrong with you". And everybody approaches me with their questions or advice as if these were things I never thought of or no one asked me before. And it happens not only with strangers but friends who are close to me as well. When my friend saw me struggling to get into his extremely high car dangling from a grab bar he said "You should go to a gym". I'm sorry I don't get into pick up trucks every day and haven't yet figured out yet where to grab and where to pull and how to find support for my feet to push away from. People often don't realize that a lot of times I fight my entire body to make those transfers. Comments about my mobility, fitness, strength that I'm out of breath and sometimes make a wrong move are really not appropriate. Try doing  something equally exhausting on your scale of ability and then we can talk.