In the dark

Imagine having to use the restroom in complete darkness. I'm sure it's difficult for a perfectly fit person- they risk sliding off an hurting themselves. Now imagine that you can't walk. You need two points to lean on, switch hands while you sit down and you can't see anything. That was my Friday night. The whole neighborhood suffered from a power outage. One side of my apartment building adequately called Arlington Square for it's shape as the apartments are built around a grass courtyard, seemed unaffected. But that was at the far end. Three others and parts of downtown   disappeared in the darkness. This wasn't the first time a thing like this has happened. In fact, Gainesville forces me back to basics so to speak at least once if not twice a year. I usually call my friend Victor and we stroll across the area and if we find one open bar, and there's typically literally one single establishment hooked onto another grid- open we get a drink there. After a few hours the power is back on and we have a good feeling of having experienced something different. But my friend was out of town. And this wasn't like one of those occasions where you blow a fuse or the power was only gone on one floor or one building when you at least get enough light through the window from street lights and buildings to make out shapes in the room. It was pitch black inside. Only a car going down the street once and again had its highlights reflected on my living room wall. I needed to use the restroom yet I could barely find the door. I had no idea where my cell phone was and I needed some light to assist me. Then I realized that my cable box remote has a backlit keypad. When you press the button it gives you about ten seconds of light. As I grabbed my bathtub to stand against it (American tubs are pretty small, lower than the toilet) I kept pressing that button to kept it from turning off. It was a risky procedure, but I had no choice. I needed to mske my maneuvers while having a sense of where my hands went. Everything else was secondary. At first a thought crossed my mind that I've forgotten to pay my bill. But all you had to do is look outside my window to see that it wasn't just me. Then I wondered if the food in my freezer was going to be OK- but I knew that things like that usually don't last very long. Two hours later the power was back. But the restroom trip wasn't something I could put off  waiting for it to come back. I also realized that I live in a hurricane state yet I'm low on emergency supplies. I should have had a flashlight or some accessories that glow in the dark. But I managed. Trying to get my remote control to light up the area as I was getting myself  situated I felt a bit like MacGyver. And I was proud of my self for finding such elegant solution.

Wheelchairs and sidewalks

I don't know much about Micanopy. It's a small Florida town that you might just drive through without ever noticing it was there. I only know it as the place where "Blue Highway" used to be, one of the best pizzerias in the area. I last ate there nine years ago, as my law school friends loved to eat out and explore and from what I hear it's not even there anymore. There's many towns like this in Florida- of two intersections and a gas station variety, but they rarely make the news. Micanopy did I believe last week, when it took a stand against being more pedestrian and disability friendly. Not something one should be proud about.  The town had a chance to put in sidewalks on its busiest street, so people wouldn't have to go through grass or walk in the street.Micanopy officials say that they get particularly concerned when there are festivities  and a large number  of people turn up and tries to get around. Many end up in traffic. The main concern was safety, there's a lot of older residents and visitors who can't  get around much. Getting through dirt and grass in a wheelchair is virtually impossible. The measure would also drive customers to the businesses located in the area as the access would be easier. From what I understood, the construction costs would be covered by federal funds. So everybody wins, right? Wrong. The measure was voted down. A very energetic old gentleman rallied the town and convinced decision makers that sidewalks will ruin the "historic" feel of it. I hope that he himself isn't in a wheelchair fearing for his life as he is trying to get somewhere, navigating between cars, trying to not get hit. I had the misfortune in being in a part of my own city, Gainesville where there weren't any sidewalks to walk on, although it did have a bike lane. Still, the proximity of the cars and the realization that I'm inches away from being hit gave me a panic attack. Being in a wheelchair I don't have the option to jump out of a car's way if it comes too close. I'm much lower than a person standing up so a lot of times they may not even properly see me. Given how fast they drive, by the time they do, it may be too late. When I'm going up or down the hill I'm  risking losing control over my wheelchair as it may roll back or forward and I have a very limited space, not much wider than a chair itself to do anything. A friend of mine said, after I told him the story that it's just a small backwards town. I don't care how big it is. If I lived there I'd probably never leave my house because I'd be so scared that something will hit me. I will never understand how somebody can choose aesthetics over safety. And that's assuming that sidewalks make the towns uglier in any sense or destroying their charm. I just hope that whoever voted against the construction can live with any injuries and fatalities that follow. But this again reminds that we have our work cut out for us at the Florida Disability Access and Awareness Foundation. People don't think of the needs of disability community unless they have to- quite frankly until it's something that they have to face themselves.

Panicked!

What can I say? I can't do it all.  Instead of arriving tired but triumphant after a mile and a half stroll at my Foundation's Board meeting I ended up having a panic attack in the street and calling my neighbor to take me home. It happens. Sometimes the limitations of my body ruin my plans in ways I wouldn't anticipate. But I dust myself off and get back in the game. It all happened Friday. A local start-up incubator offered us a proper space so we could hold meetings every few weeks in a place that wasn't a restaurant, a cafe or the back of the shopping mall. And I was very excited to try it out for the first time. We had a room reserved from 6 to 8. I've never been in that part of town before and I had to figure out how to get there. My choices were - route 2 that I've never ridden before and wouldn't have a clue were to get off or just "walking" there. Google Maps claimed that it's only a little over a mile away, a 16 minute walk (more like an hour for me) and a 35 minute bus ride. I figured I had an hour and a half, the distance didn't seem that far and I've wheeled to places that were over a mile away before. Get to 4th Avenue, it will strangely merge to  3rd and you'll get to Hawthorne Road. Easy enough, yes? What Google Maps didn't tell   me was that most of the walk will be up the hill. What I also didn't know was that it was sending me through areas with no sidewalks. I was wheeling in the streets or in the bike lane or through designated parking spaces. From time to time I took the side roads that were saver, but going away from the avenue only to get back to it a few blocks later was taking too much time. Finally, when I was rolling up the hill I had to stop.I had a feeling that at any point I could roll back and cross the lanes into the traffic. The cars were passing me very closely. Even though I moved to the side of the road at an angle I still had a feeling gravity will pull me back into the traffic at any minute. I needed a piece of concrete to separate myself from the traffic to feel secure. I ended up rolling onto somebody's driveway and I pulled out my phone. I was there for a while emailing Keira, one of my boardmembers who was about to start the meeting. I told her I was in trouble, so she drove out to find me. There was a miss-communication- I guess she thought I was on the other side of town. Between her desperate emails that she can't find me and my desperate descriptions of the area I knew that we were not getting closer.  It was 40 minutes later My phone was about to die, so I called my neighbor who happened to be on the road and agreed to pick me up. When he got there and we started to load my chair into the car a policeman came by. He was looking for a man in the wheelchair that was supposed to get to the meeting at GTEC. It was almost eight at that point and there was no meeting to get to and I was too panicked imagining what would have been to participate anyway. I guess when she couldn't find me Keira asked the police for help. Luckily I was able to figure my own solution. Yes, I should have taken a bus. A mile walk turned into a three hour adventure. The whole experience left with the feeling that I'm very lucky to have people who  care about me enough to be willing to help when I'm in trouble. But it also got me to think about how wheelchair unfriendly sections of town can be even in the city that seems familiar. I could have used the application my foundation is working on now myself that day. Finding the right route for a wheelchair is different from figuring out a bike  trail or navigating traffic.

Save a class

One of my old law professors wrote to me today. University of Florida is scaling back his class, one of the few practical courses the law school offers. He believes that the program is in danger of being canceled all together. He asked me and I imagine of sizable group of his former students to write emails to the Deans and administration if we found it useful. I decided to do more than that- and vent about it on my blog. Let me start by saying that the class was not enjoyable at all and many times throughout the semester I felt I was in over my head. But then again, school isn't supposed to be fun. I finished the class with the worst grade in my American academic history. I didn't even know there was a grade like that given. That entire semester ruined my until that point pretty good GPA and any chances at graduating with honors. I can't be to hard on myself - that was the semester when all my green card petitions were getting turned down. I thought I was getting deported until 8 months later everything worked out. That was also the semester when my parents flew in for Poland for my graduation, stayed over Christmas with me in my tiny studio room, while making it more accessible with me, all while I was running around like crazy trying to finish my assignments. I signed up for the class because I wanted to know how to actually "do" something. That's why I decided to take  most of the practical courses in the curriculum. On the specific elements of some exotic tort or a crime I can read up. But I didn't want to caught unprepared on my first day of work if I'm asked to do something. I could get that skill  it in school, or then spend hundreds, thousands of dollars taking continuous education courses. Between law practice management, trial practice, advanced litigation and the only mandatory one- legal drafting I've learnt how to actually help a client rather than a bunch of  theories and definition. When I was first asked to help a client I didn't even know how to get started. Then I remembered that in LPM we were introduced to a practice manual of sorts- The Florida Legal Secretary. My drafting skills, from my legal writing classes, how my writing professor tortured us with English grammar and punctuation are my bread and butter today. I never worked at a law firm, I had no one to teach me. And one of the first things that I had to teach myself before I could even help anybody was what document to file when and to response to what. If you ask me, there's not enough practical courses offered that teach you to deal with real world problems. I was lucky to have friends who have practiced much longer than I have always willing to answer questions, yet there were times when I managed to surprised them with something they never dealt before. There's no "beginner level" for lawyers and when you get started, layered issues come at you at once. Nobody cares this is your first time. Now, the UF Law school has done a lot to accommodate the students - we had a curve meaning that the professor couldn't flunk the bottom 40% of the class even if they deserved it. Courses need to be popular with students or may not return- focusing on what the students want rather than what they need- as it is with Disability Law that pops up on the schedule once every few semesters. But I think that it needs to stop. I suspect people don't like the strict rules of some of those courses- in trial practice we were not allowed one absence. LPM challenged me in many ways to do everything as a one man law firm- from my case file to things like spreadsheets and invoices. That class taught me how to log my own hours - which is not hard to do, but would be embarrassing to have somebody show me.   You need practice to do the job that you're supposed to be doing and do it well. I think it's better to train and make mistakes in classrooms rather than learn on them in real life where stakes are much higher than a great

Disability sports

When I was in high school, my friend shared an idea during our English class. Being an avid fan of winter sports, he wanted to build skis that I could use. He was projecting his own passions onto me. Being active took up most of his free time and he couldn't imagine how anyone wouldn't want to take on that lifestyle. I couldn't, therefore in his mind I was missing out. It's possible that he didn't do it out of pity and he just wanted to share a piece of his world with me. The truth is, I never liked sports. I don't enjoy watching it, I never had dreams or regrets of being  an athlete. To me, football, or what Americans called soccer, involved watching a bunch of adults glued to the TV, yelling at the screen when I was little. It also meant cartoons would be delayed and for the life of me I could never understand what all the excitement was about. Quite frankly, I don't think my disability has anything to do with it. There's a lot of people, my mother being a prime example, who don't enjoy sports. Yet with me, a lot of people assume, that simply because I can't do something I must be missing out. I've been involved with way too many physical activities to get a sense of what I would and wouldn't like. Bicycle equals pain and parts of my body going numb. Swimming makes me tense and panic fearing water I could easily maneuver in if I only came down. My muscle tensions made a lot of activities harder or even more painful. Sport is just not my thing. But then I remember being six and demanding getting skates from my parents. They got me something you could put on my orthopedic shoes- I just don't remember us ever using it. How would it work? My mom holding me under my arms skating in harmony? I guess as a six year old I never thought it through. But there was something about the music, the ease of the movements and the ice that spoke to me. I've never thought about where and who I would have been if I didn't have CP. I think it's counterproductive and I would most likely be a completely different person. But I must say that as a child I always admired my uncle Marian. In the 70's and 80's he danced for the Polish national pantomime until his accident in Germany. He couldn't dance anymore, so he stayed in Munich escaping the communist regime and became a cook. Posters all over his apartment serve as reminders of the career he once had.  My mother remembers how if you stood me up next to a grab bar I'd "dance" in a spot. I loved to move, I loved rhythm. But that was before my surgeries. Months in a cast made be heavier and with one leg a bit shorter than the other I didn't get to do that anymore. While I never stop and guess what would have become of me if only... because I have so much going on in the one life I do have, a career full of harmony, music, fitness, passion and admiration wouldn't be a bad alternative.

Get my passport

You know you're Polish, when you have to ride for 4 and 1/2 hours from Gainesville  to renew your passport. The bureaucracy required me to show up in person and I should feel lucky- if it wasn't for the fact that the Consul has set up shop for a few days at the Polish Catholic Mission church in Pompano Beach I would have had to fly to the embassy in Washington DC. At the same time, my Irish friends were able to apply for their new passports simply by mailing their documents to New York. You would think that in the age of computers they would be able to set up measures to at least help people with disabilities who can't get around easily. I don't drive and I'm in a wheelchair. I had to pay a friend to drive me there, nine hours on the road minimum, which was still cheaper than having to figure out flights, taxis and a hotels in DC, because I don't think I would have been able to get back that same dame. And for what? To fill out a form, a return mail envelope, a petition to have the passport mailed- you need to list special circumstances that prevent you from picking up  the document -once again- in person at the DC embassy- and to give them your pictures. Granted, they did try to take my fingerprints, but as soon as my spastic right hand proved problematic and wouldn't read properly they just gave up making an annotation in  the system that the prints couldn't be captured. American Immigration had in contrast rolled my fingers back and forth over and over until they got it right. The building itself was incredibly wheelchair unfriendly. Not something that you see in America that often. Thresholds, steps, narrow hallways and not one wheelchair accessible bathroom- and after many hours on the road let me just say I was eager to find one. Thankfully, we were able to  grab dinner at the local pancake restaurant after and of course there was no problem there. I just wish that the Polish government paid closer attention to their more vulnerable citizens. Is it that much to ask of an official state operation to be able to accommodate someone with a disability and pick a building that they can easily get to? But that's the thing- the administration rarely thinks of individuals in wheelchairs as being active, being out there and like me needing a passport. At first they even thought I was there accompanying someone else. What can I say. They were simply not ready for me- and it was to me a good a reminder and illustration of how little my home country cares about me. For a few days I've been stressing about getting the right picture. Cropping, photoshopping, erasing backgrounds. I've heard stories about people getting turned around for having a photograph that was too light, too dark, too pale, too high contrast, too low contrast and don't even get me started about how controversial glasses seem to be. A person accepting them seems to have a lot of discretion as to who they send back, so I brought three different options that took me a week to get ready. At the same time Americans just get their passports and pictures at the post office. A Polish one is quite an investment- $144  and  half of that if you have a disability, add $17 for mailing, add $40 for faster processing add what I believe was $20 for a temporary passport. I guess I can have a roadtrip across the state once every ten years- having to renew this document now just reminds that it's been almost ten years since my American adventure started. I'm different, but my country feels to have changed much

Disability

I've been quite conflicted lately. I've spent years promoting the image of people with disabilities as regular, capable individuals. I've started the Florida Disability Access and Awareness Foundation on a conviction, that given the right type of information about the world around them (accessibility) coupled with the right type of response from the community (awareness) they can lead more fulfilling lives. But I'm also an attorney. Although I don't maintain a regular practice from time to time I agree to take on cases that will help me learn and develop my skill-set or because someone really needs my help. Over the last few months a few people with disability approached me to have me fight for their social security disability benefits. They felt that having a disability myself I will be a determined advocate of their cause while being mindful of their limitation. And while I'm eager and executed to do something that affects people's lives, Social Security Administration's definition of what "disability" is and what a "disabled" person does is in stark contrast to what I've been advocating before. Since I moved to America I believed that over time society will adapt to be more inclusive, approachable and accessible for people with physical and more understanding for people with mental conditions. That's what they call the social model of disability. It evolved in response to the so-called "medical model". That is the approach that the SSA takes. People who have turned to me mistakenly thought that all they need is to be diagnosed with some disability to qualify for disability benefits, not realizing that it's a process and very often a convoluted one. The Administration has its own definition of "disability". A person over 18 is disabled if  if he/she is unable to engage in any substantial gainful work activity because of a medically determinable physical or mental impairment that is expected to last for 12 continuous months or result in death. If it sounds gloomy it gets worse. Without boring everyone with the procedure and an explanation of what an attorney does in the process and how every of the findings of every element is made- what this process comes down to among other things  is a determination that a person can't do the job they did before, can't adjust for any other work and they do so by either matching a medical listing that SSA uses or by showing the devastating effects the condition has on key aspects of his on her life. In a nutshell, it has to be bad. With my condition I would need to have an IQ under 70 or be disruptive with emotional outbursts. It's very specific.It's not enough to simply have something that limits physically and mentally.   Claimants consult attorneys usually after being initially denied. After the initial decision, there's reconsideration, then a hearing, then they can have their case reviewed by the Council in Virginia. They higher they go, the longer the waiting time and statistics show the lower the chance of success. And then you can have your day in Federal Court. What I found is, that it's a very paperwork intensive process- the right type of medical documents the right wording are necessary to convince the court. If there was a problem with evidence initially how can there be a different  result if you don't present anything new? Sometimes it's not the applicant doesn't qualify- he just can't prove it. The money can do the world of difference for many of the claimants, after all if they can't work how can make a living. And yet I feel a bit strange, focusing on the negative. What a person can't do. Showing how they are un-able. It's a pretty harsh determination and I'm in odd position having to show bad it really is. A win is not really a "win" as claimants end up putting up with their disabilities for the rest of their lives. You just pop in and out. And yet all I want to do is a good job with what I'm given.

The Window

It's a strange thing to say- as I looked at the window in my bedroom I realized it hasn't been open in years.  As a child I couldn't fall asleep without it being at least slightly cracked. I tossed and turned and felt like I couldn't breathe. I'd go to great extremes just to get it open. During m years at rehabilitation ward of the Child's Health Centre Hospital in Warsaw I had this night routine that required great planning. I would crawl off the bed, put a chair next to the table, climb up the chair get on the table to frantically jerk the handle just to get a little bit air. It didn't matter what season it was. I didn't care how cold it was outside. If anything, it was the cool breeze that put me to sleep. Sometimes, while rearranging furniture at night I'd make a sound. A nurse would catch me on the floor. I'd tell her I fell of my bed and after an instance or two they started putting those bed rails up for my safety. I thought that if I told her the truth I'd be yelled at for doing all this nonsense at night instead of sleeping. I guess I've learnt to sleep with the windows closed while visiting my cousin in Las Vegas. The Air Conditioning was constantly circulating cold air and if you tried to stick your head outside - you'd melt in the middle of that Indian Summer. I guess for me it was about the stale air, the odd smell of the room.  When I was visiting my family in Poland it was the cigarette smoke that the walls, drapes and furniture felt soaked in. I think I was quite a trooper when I agreed to take a smoking room in a hotel that confused my reservation in Tampa, the day before the Bar exam. Getting used to the aftersmell of a cigarette that seemed to surround me was quite a challenge, although the front desk gave me a battle of a fabric freshener spray. Being forced out of my room in the middle of the night because of a gas leak and fire alarm took the cake that night anyway.  It's been year since I visited home, but during my short stay in Warsaw I noticed a familiar routine. My dad going into my room before he turned in for the night, opening my window, locking in in place and getting the roller blind down. Just like the old times. And that made me smile. It's a funny thing to think about, but over the last few days I've had a feeling that my AC is broken. It was set to 76 degrees  F (who knows how much that is in C?) and it felt very warm. I thought I was perhaps coming down with the flu being hot and sweaty, but a friend who was sleeping over in my living room  was not comfortable either. It doesn't feel like 76, she said, reset all my vents and took it down one degree. She felt it was the filter, that I hadn't replaced in a while and the age of the unit  that made the room hotter. I already had ceiling fans running in every room at full speed as I thought to myself, if only I could open a window...