Friday, February 28, 2014


I may often jokingly bring up that I'm old by Gainesville standards. Most people I meet here are after all 23 or younger. I may be older than most people I know, but I'm still only in my thirties. You wouldn't  have guessed that however if you went through my mail. At first I thought that these are anonymous junk offers. I didn't think much of them and just threw them away. Life insurance and final expenses ads. Brochures advising me of governmental benefits and the cost of a funeral. Apparently for most of them there's no medical exam and no one gets turned away. But then the volume of the senior tailored in my mailbox increased. I'm encouraged to join the AARP -which is an association of retired persons in the US and a wide range of AARP endorsed services and products , from hearing aids to cell phones now want my attention. I didn't think much of it when I was invited to participate in a bone density study for people over 65. Actually I thought it was pretty funny- good luck getting me walking up the stairs. I gave it as a joke  to one of my friends in his 50's saying- they want you to call this number. Yesterday I found an envelope from UF department of Aging inviting me to participate in yet another senior activity study. It had my name on it and my address, it wasn't something that simply everybody gets. A while ago a friend of mine suggested that I must be on some kind of a list. And the more that I think about it, the more I think he must be right. Yes, University of Florida law school maintains a contact list for its graduates, perhaps it was an  inter departmental mishap? Maybe it's something that got out of UF Disability Resource center where I have been registered for many years. Whoever sends these out must know I have mobility issues, just wrongly assumes it must be because of my age. That I need assistance. That I need resources. That my quality of life suffers and they need to improve it. My friend suggested that they must must know that I'm very involved in the local disability arena. I started a disability non profit after all. And I wouldn't make a big deal out of it at all if I didn't have to clear my mailbox out of this junk they stuff in there every time I open it. Cards, envelopes and brochures of various sizes that I need to carry home just to dump it in the garbage right away. But when you think of it, it is quite offensive. To assume that a person with a disability must necessarily be contemplating funeral costs. Or looking to get a government subsidized cell phone. Or placement in some assisted living unit. It never seems to be crossing anybody's mind that you can have a disability and be fine with it. Be active and productive and making the best out of it every day. That I'm independent. That I don't get social benefits of any kind and actually have a profession that many consider high end. And that I'm the one having to dispose of all this junk I don't even care to open.

Wednesday, February 26, 2014

A sense of hope

Throwing myself into my nonprofit work really helps me get my mind off things at home. (You could drive yourself crazy thinking what is there that they're not telling you and how it might end up). And for once things appear to be picking up. We've been interviewing new volunteers for the last few nights. It seems that people really want get on board bringing their own ideas and fresh perspective. Some of these were old friends who want to help out and our excited about the project. It's funny when someone you have known for a year or two if not more ends up having a skill you didn't know about or turns out to be exactly the professional you were looking for. I had my doubts, but the platform that Linked In put together for non profits really helps us get the word out. While not everybody that applies is always a new face in my circle, this set up allows me to simply say: We need help. Can you lend a hand? And for now we are making the connections. And it turns out that just as clueless I was about what some of the people I had already known did and could help me with, they had no idea that I've put together a nonprofit and what it was for. Over the weekend we met a young lady eager to help with a businessplan. Today we had coffee with someone who might just make the mobility app a reality for us. Even if it doesn't work, brainstorming with these people and sharing our mission with both friends and strangers gives me a little boost of energy. This just might work! This past year we got a little discouraged. Some of the people that we started the Foundation with fell off the project right away. Not that they cared to contribute much in the first place and their motivation for getting involved will forever be a mystery. But regardless of how this turns out, I'm really excited by the thought that I don't have to be alone in this and some people are not only willing to help, but are eager to get started. And we always say: It's OK. Take a few days to thing about it. We don't expect the impossible. In fact we don't expect anything at all. If you feel like you don't want to do it, it's fine, just tell us. And don't be afraid to turn to us if something comes up and you can no longer be involved. So far writing back to some of those applicants or just browsing through submissions has been a really fun journey. And that makes me want to open it up to even more people, so we can make the world more disability aware one small town at a time. If you are in Florida or even anywhere in the United States and feel like you can help us with: marketing, fundraising, app design, putting together an action plan for us, web design, photography, networking, PR or anything else to help us get FDAAF off the ground reach out to me. I for one am ready to get started. Visit http://fdaaf to read about what we hope to accomplish. To make things even more amazing, at the same time that we were bringing new faces to the organization, old faces resurfaced. An old friend who helped us draft some initial press releases and web content decided to come back and help some more. And this really makes me want to see what happens next, where this crazy journey will take us.

Monday, February 24, 2014

A Matter of the Heart

Every so often the physical distance between me and my family really gets to me. They're in Poland and I'm in America, and whenever something happens I should be there with them.For the last few weeks my father has been in a hospital with his heart condition. A couple years ago he had a double bypass and a valve replacement. Now it started to act up again and for a while he was in a very serious shape . Between his blood thinning medication, his infections and antibiotics he strained himself pretty badly. I know I've written about this sense of isolation before. And how things in my family have happened through the years and they didn't even tell me. I didn't even know about my dad's original heart surgery until after the fact. This time around my mom keeps me updated. I call home a couple times a week and we communicate via Facebook. I look for cues in the tone of her voice for the things she's not telling me. Does she feel sad or a little bit more optimistic. If I haven't heard from her in a while I assume there's nothing bad to report. But when the news first broke, I was even a bit afraid to open my email or look at my phone in the morning. You want to put it off for a bit, not face the day and what it throws at you just yet. I know it's silly. But sometimes I like having that extra five minutes of not knowing, before I compose myself. I know it's there's some news.  I see my phone blinking.  But before I go on I take a minute.  My mom is now the only source of information, my eyes and ears in the story. And it's an odd feeling how you want to know more, you want to do something but you can't and you hang onto every bit of news for a sense of hope.  I don't have any other means of ways to know. And I can tell that as soon as other topics pop up in the conversation, things must be looking a little better. One thing about my dad is he is pretty stubborn and you can't hold him down.

Friday, February 21, 2014

Just say NO

I understand that charity work is not everybody's cup of tea. When somebody approaches my nonprofit saying that they want to be involved I'll be the first one saying are you sure you want to try? Do you really want to take this on? Do you think you can spare the time? Nobody will be upset or think any less of you if you turn around and say I've changed my mind. Just be upfront about it and let us know. I'm fully aware that I can't expect amazing things from people who volunteer their time. And I'm grateful for all they do, I'm thankful that they're even trying. But what I do expect is for people to be able to come up to us and voice their concerns and tell me that they can't or do something, even if they say they would. This appears to be a common pattern. Our nonprofit first got started with a group of people who felt energetic and ready to change the world, most of whom fallen of the grid without any explanation. For some, contact just stopped. I don't know what they were expecting and how fast this thing will grow. I suspect there were people who first jumped on and wanted to tag along and see where it takes us. Again, I understand that circumstances change. You may even overestimate your own ability. But as we are all adults we owe it to each other to be upfront about things. If you don't want to be involved don't get our hopes up. Had I known how little what everyone declared before we formed would actually happen I'd think twice about forming a nonprofit. But it's here and I'm determined to save it. Still, over the next months we had people approaching us with different ideas. But the pattern i always the same. "-Hey I can be your grant writer", "I'll put together a business plan", "I can do an amazing presentation". And then nothing. No contact. And we've gotten it from people of all ages quite frankly. And for months we've been coming up with excuses between me and the other board members. More than a person in question obviously cared to explain themselves. It must be because they're busy. Or they're overwhelmed. Or they started a job. It's one thing that you say you'd do something and then don't do it. And that's bad enough. But to not even explain anything? To not even say I will not do it. And we've been telling everyone we met at ever junction. Probably more than they cared to hear but we wanted to reassure them. It's OK if you say no, if you walk away if just announce it. In fact we've been saying it so much I feared people would feel like we want them to quit. One excuse we came up with recently was, "they're just unable to say NO". I think no is a perfectly acceptable answer. It lets you figure out where you are and move on from there. It's upfront and honest. Still, many people will just not say it. As if there's some benefit in keeping everyone in the dark. We'll find out eventually, but it will drag on. Is the concern that you don't want to be the one who disappoints and is unable to deliver? For me the only disappointing part is luck of honesty. I now go into those interviews not expecting much. Even if the initial impression is great. But then I still have hope that what we've done can work. And that pushes me forward.

Wednesday, February 19, 2014


There's a man that I see every Sunday on my way to the grocery store. He usually boards just as I'm about to get off. He uses a cane and seems to struggle quite a  bit when walking, moves a bit wobbly, but steadily and surely. Seems to swing from side to side to find balance. If I had to guess I'd say that he has a neuromuscular disability of some sort. Talking seems a bit of a strain to him as well. As I take the 3 pm bus I know there's a pretty good chance I'll see him at our regular spot. The route comes by every hour and goes out of service after 5. This gives me just enough time to do my shopping without having to worry that I'll miss my last run home. I'm usually done in under an hour, but having that additional bus as an option gives me some peace of mind. Last Sunday the bus was getting ready to drop me off  just as The Man was attempting to board it. The driver already started to extend the ramp and said to him that he has a wheelchair to unload first. The way it works is, they get a lift or a ramp depending on the bus type out first, go into the back to undo the straps and hooks, while those waiting to get on the bus wait. Yes, it sometimes holds up the traffic, a long line of cars waiting behind us and quite a few upset riders but that's the way it works. I need to get off before anybody else can get on. The ramp opened and the man started to climb it. Swinging his hips from side to use using his stick for balance. And he was very upset. You shouldn't have to done it- he uttered to the driver a few times- I don't need it. Don't treat me any different! In his mind the ramp was some form of special treatment and he didn't for a second think that it had nothing to do with him. I just happened to be on the same bus getting off at that very stop. Other passengers were trying  to calm to down explaining that there's a wheelchair on the bus and that's what it's for, but it took him a while to understand. He thought that the bus driver saw him on the stop and needed that extra help, maybe assumed he's not able to walk, maybe even pitied him. And he seemed very proud of his mobility, that he's able to do what he's able to do by himself, without the stairs or labels. Finally a lady across from me got through to him. -That's OK, I'm getting off- I explained- You may not need it, but I do- I said as the driver was releasing me from the straps. The driver tried to lighten the mood when he turned to The Man and jokingly said: See, it's not all about you. And it got me to think, has something like that ever happened to me and I didn't know? Did I ever get upset over something I assumed was about me and my disability, when in fact it had nothing to do with either? How often do I get worked up over a misunderstanding- a projection, a thought in my head simply because I make an assumption and don't even have a full understanding of the situation? Maybe sometimes the looks and reactions are really about something else. Perhaps the driver is right. Maybe it's not about us sometimes but we find some ways to make it all about us anyway?

Sunday, February 16, 2014

Continuing Education

Those who follow my writings know, that I often write about all the ways I benefited from Conductive Education- a rehabilitation method which during the mid to late 1980's was extremely popular with kids (and families) striving to overcome Cerebral Palsy. The Hungarian Institute in Budapest became a popular destination for parents from both sides of the iron curtain, and an expensive one at that and many children saw great progress. I have also written about the method itself. How for decades it attracted supporters, but remained secretive. And how young men and women, mostly women known as Conductors, the rehabilitation experts if you will, after few years of training scattered across the world working for facilities as well as families and communities who could afford them. It appears as if a Conductor, once he or she graduates from the program is now fully formed and equipped with all the skills needed in the profession and is prepared to take on any challenge that comes their way. I don't really hear of them expanding on their talents, taking follow up courses or even maintaining relationships with  others like them in their countries and across the world.  I have no idea what it must be like to know everything you will ever need to know before you get started. As an attorney in America I'm constantly required to take continuing education courses. Every few years I must report a certain amount of credits or else I'm in trouble. Some may say it's a way to make money off lawyers as those things are both mandatory and not very cheap, but I think it  accomplishes a lot of other, positive things. It makes  us constantly grow and learn. It exposes me to new areas, developments  in ways and concepts that I don't think having me read about it or researching it would. Often it teaches me some practical skill. One of the things I struggle with still is figuring ways to do things that I've never done before. Although for this I often rely on other, more experienced lawyers who never turn me away when I simply don't know how to get from point A to point B. Things like where to go and what to file. Just ask my friend Bill. I'm sure he wants to shut down his laptop every time he sees a blinking message from me on the bottom of his Facebook page but so far he's been very patient with me.  I'm not a part of some law firm, I only practice law occasionally-  I had no one to show me some of these things. And while I can figure out most of it on my own, sometimes I need guidance. As I do those things, they are new things that I have learnt and I'm more confident about doing it again.  And I do think that what lawyers were able to accomplish, particularly in Florida, through the classes, the meet ups and the luncheons is establishing a sense of community. I can't think of a profession or a trade that would not benefit from networking. From swapping war stories. From learning that were you've been others were before you. Maybe sharing some tips and hints. In case you haven't guessed it already, I'm talking about Conductors again. I don't quite get how they do what they do: They travel around the world, they often encounter  cultures that are strange  and foreign to them. They leave their homes and everything familiar and end up often in very intimate family settings. How lonely that must be, how isolating, with nothing else to go on, but secret teachings of Andras Peto, a man who lived in Budapest decades before most of them were even born. A method. A treasured concept they are apparently told not to disclose to anyone, so they keep isolated not only from their surroundings but from each other,  while Peto, almost 50 years after his death is cherished like some bearded man in the sky. Doesn't it help to reach out to others like you? Who live where you are, who can do as little as understand what your going through? And who you can share your frustrations, doubts and failures with? Conductors must take on a lot of expectation, of hope of joy, of struggle but also  of disappointment. Recently an American CE organization contacted me. It was interesting to see it was from somebody writing on behalf of their Continuing Education department. Would I be willing to talk to their members about my experience?- they asked. It was interesting to see how they wanted to learn and felt I had something to teach them. And I said as I had times before: I'm always willing to do Cerebral Palsy/CE programs, speaking engagements and fund raisers. Just tell me what you'd like me to do and how.

Friday, February 14, 2014

Professionally volunteering

Perhaps two weeks ago I got an email from the good folks at linked In- the website where professionals network, recommend each other and look for jobs. They were launching a new platform for nonprofits: and since I run one they were inviting me to a webinar presenting the program's functionality. Perhaps if it was some lesser known website I wouldn't be so eager to try it. Over the years I was invited to try a number of things designed for nonprofits, especially during the time I was working at the Jordan Klausner Foundation. We were for example selected for a free marketing campaign with a project called Wildfire that in theory was designed as a way for marketing students practicing their skills and doing something for the greater good. Oddly, these never got off the ground as soon as we made it clear that we wouldn't buy anything or otherwise invest. Not upfront at least, not blindly. It's hard to get excited about a new ad in my mailbox anymore and you always look at it and wonder- where's the catch.  But so far, I'm really happy I did. Turns out LinkedIn  not only designed this new website to help  charities recruit volunteers, but as a thank you for my participation I qualified for some free "volunteer job" postings. 100% off is an offer we really couldn't refuse. Linked In for Good is also intended to work as a tool to recruit new Board members. And those of us involved with the charity sector know what a difference in can make to have a qualified, competent person sit on the board to make connections, facilitate donations and set up fundraisers. Help with programs, marketing, PR and grant writing. Apparently Linked In data suggests that over 80% of their users, qualified professionals in their areas of expertise want to volunteer their time for greater good. And even big charities that have the money to spend still use volunteers to help them along. We of course need them, because we don't have the funding. But are goals are noble and with catching a little break we can make it work. Because someone needs to be talking about transforming the world to be more inclusive for people with disabilities and someone has to promote empathy. Understanding over sympathy which is not a productive emotion. So far we have been getting a few applications from all around the world and I'm quite surprised. This can actually work for us. We can make this crazy mission into a reality and now there's a chance. But we do need help and we must rely on volunteers. So far it was mostly students who came and left and as much as we appreciate them, sometimes we need more professional assistance in these limited areas.  Because nobody will work with us if it's not polished in all aspects, and those of us who come from the charity sector know that good intentions are never enough. What LinkedIn does with this new platform is linking us with people who want to make the difference and have the expertise that actually allows them to. And we do need help. With redesigning the website, grant writing, fundraising campaigns and events, getting the word out through PR, developing business plans and lastly, putting together the accessibility app I have been trying to get off the ground for months. Please check out some of our listings and apply if you can help. Linked In for Nonprofits are currently only available to US charities. The job postings are tied to an area zip code, meaning that looking for volunteers in other areas requires multiple postings.

Thursday, February 13, 2014

By myself

A week ago I needed to print some motions for court the next day. My printer wasn't working, none of my neighbors were around to help. I could have called one of my friends to come and help me and I'm sure they'd done it gladly. At that point I've decided I will do this by myself. Like I used to for years when I first moved here. On a bus, when I didn't have people I could ask for favors or to drive me somewhere. I also realized how much I confined myself to the immediate area. Most of the things I need, I find downtown. There's really no need to go anywhere else. And the less I do it, the less I find the energy and the need to. Years ago I'd just hop on the bus to go somewhere, get something done, without a second thought. It may had been a chore to spend a long time in transit, but I can't quite explain it. Making it somewhere and getting things done gave me a great sense of accomplishment. And yes- I really enjoyed being able to get around, to keep moving all by myself. Stepping outside of my apartment always felt like an adventure. I got to meet new people and see new places. Maybe it's because for many years before I moved to where I lived today I wasn't close to anything really. To experience anything I had to hop on a bus and get somewhere. Have an adventure but even get food or coffee. Doing any minor task involved me forcing myself out the door and into the world. And I've met so many amazing people in the most bizarre circumstances. Starting a conversation in a check out line or talking to people studying at a cafe. Now I make my own coffee. No need to go to Starbucks that much anymore. While I don't miss the drink I do miss the social element of it. The let the day take you where it will feeling I've always enjoyed about Gainesville. I've decided to take the Later Gator bus, the night service known for taking the party goers who are all partied out home. I went to the copy and printing place Midtown, the part of Gaiesville I don't visit often. How long has it been? Months? Years? They have a Dunkin' Donuts in there now and a Baskin' Robbins. I remember how I would go there at all times of night to finish a project, write papers and study for the Bar exam. It had a 24 hour coffee place. Now none of their food places are open 24/7. And it gave me an odd feeling. This place was connected to so many of my school and real life experiences. It's were David Cumming recorded an interview with me for his Alligator spread story. It's where I printed all my exhibits for the Trial Practice class, which seemed like such a big deal at the time. It's where I got my Immigrant Petition on paper for the first time. And all this happened between running for the bus to take me home or to some other part of town. Probably to meet a connecting route. So much rolling around, so much movement. I miss that. And I miss how much skinnier I was having to rely on my muscles all day. There was rarely any reason for me to be home other than sleep, because, you guessed it there was nothing there. Today I stayed in, because I felt it was to wet outside and it seemed that putting on a jacket would be too much of a bother!. But I did have a great sense of accomplishment when my motions and notices were finally printed, placed in envelopes and mailed off. Like old times. I can't quite explain it. That Saturday I took a bus to the grocery store. By myself. Something I have not done in ages. For a good  reason. I'm limited as to how many things I can put in bags hanging from my chair. But I forgot how much fun it was. On Sunday I went again. It was not as efficient that asking a friend with a car to help me load up three weeks worth of food, but rolling up to the stop, heavy from all the things I bought I had a feeling of satisfaction again. Because I did it all by myself.

Tuesday, February 11, 2014

Busy bee

I have such a busy week ahead of me. And I must say, I like keeping occupied. It sure beats the alternative. I like feeling productive and I enjoy getting things done. Cross it off your list, move on to the next thing, and your week is going great. Today was spent at the courthouse again. Later this week I need to redraft a badly written contract someone showed me and then give business related law advice the next day. One thing I still have a hard time factoring in or penciling in is relaxation and sleep. It seems that going in front of a judge for me turns into a big production every time I do it, no matter how minor the issue at hand may be. Sometimes I'm not even inside for five minutes. But it's not what happens in the chambers that stresses me. I know what I'm doing, I do my research and the work that's required. It's everything that leads up to that on that day that upsets it. I won't deny it. I probably have it harder than most people. Does it take me longer to get ready? Of course. But I still need to look presentable. Wear a suit, button up my shirt and make sure that not a hair is out of place. That's not as easy as you think. I mostly use one hand and I lay down or kneel in order to get dressed. You need to make sure no piece of wardrobe is sticking out or gets twisted. Takes some time to get it right, and the more nervous I get about it or if I'm running out of time the more I have to fight my own body. Knowing this, I need to give myself as much time as possible. I got up bright and early today although my hearing was at two. And even though the issue was almost clerical and I knew this full well, I've tried not to let anything else distract me. I was in that zone, and for the preceding six hours I was just showering, getting dressed, having coffee, making sure I ate well, that I was there well before time. I considered writing on the blog or getting a jump start on the two issues down the line, but it would feel a bit like cheating on something that needs my full attention today. Then I had to make sure that I left in time to account for any possible delays. I can wait for the judge. The judge will not wait for me. One final sip of latte and I was off. Gave myself a final look to make sure my shirt and suit look well and that I've done a good job shaving. I have to say. There may never come a day when I'm not stressed getting ready or that putting on a suit and dress shoes is not a chore. But the more that I do it, the more I understand how my body works in situations like this. How much time I need and how to plan accordingly. So that I can look OK and allow myself to focus on saying or presenting what I came there to do. And to make sure that there are no surprises. But when I do get to cross off that one thing off my list, I feel truly accomplished

Friday, February 7, 2014

Me? A social butterfly? or why "Breakfast at Tiffany's" is my favorite movie

My neighbor calls me a "social butterfly" and I don't think I like that term. I've heard his friends who just met me use it too. Yes, it's a fun, outgoing person, that navigates between groups and circles and gets along with everybody. I like the part that implies that I'm generally likable. But that expression in my view also carries a hit of critique if not condescension.  It's someone who doesn't belong in one place, so he or she is all over the place. To me that also means that bonds and relationships they form are superficial and frail. And this is not how I am at all. I like meeting people and learning new things. That doesn't mean however, that I'm everybody's friend. Nor that it's something that comes to me easily, as effortless as I make it seem. My neighbor has never seen "Breakfast at Tiffany's", that for some reason happens to be one of my favorite movies. Otherwise, I'm not very familiar with Audrey Hepburn's filmography, although I do have a calendar with her pictures in my apartment. One night I decided we would watch it together. I've seen it a number of times. It's not the cliched romance that does it for me or the happy ending. It's the character of Holly. And I don't care if she's nice or selfish (my neighbor found her attractive, but not likable at all) or if she is or isn't a real phony. It's the ease with which she relates to people. The "there's something about her quality" that attracts others. But mostly, how she refuses to be shaped by her life and circumstances. The amazing feeling of freedom and free spirit that oozes from the screen. Holly, for better or worse is a product of her own creation. She changed her name, her back story, her accent, her outlook and her attitude simply because she wanted to be something else. You may laugh, but this is something I relate to very strongly. When I first moved here, I had no friends, no family no roots. Nobody has ever heard of me, so I could have become anyone. And I wanted to create a new me, because quite frankly I didn't like the old me. Boxed in between the walls of my apartment in Poland.. Yes, I could carry a conversation, but I was awkward in public. I didn't socialize. The main thing I was determined to change upon my arrival is simply all that. To be interesting, interested and engaging. To be outgoing and social. And to let life in and let it surprise me. That of course meant that sometimes I had to push myself out into those situations by design. And over time I became that person. Not because I wanted to be liked but because I wanted to like myself.  Let's me honest- I'm the guy in a bright yellow wheelchair. I'l make an entrance wherever I go. I came to America to have an experience that would affect me profoundly. Something that would change in ways that there was no way back. It's odd to say, but now I can say it. When I applied to law school in America, to come and live here, the academic part of it was something I looked forward to the least. (And my grades that first year showed it. They weren't bad, but they were below my standards)

 The thing about "Breakfast" that sets it apart for me from most movies of its time is how it gives me hope and how it conveys  the feeling that life is yours to grab by the horns and you're in control over your destiny. Be free. Love. Have friends. Be whoever you like. Just be happy.

Tuesday, February 4, 2014

The Bus

One of my greatest Gainesville fears is having to cross University Avenue, particularly at one of the city's busiest intersections with 34th Street. I dread having to do it, I avoid it if I can. This was where I was hit by a bus a little over nine years ago. Even with all the time that has passed, I still tend to tense  up and freeze when I have to the other side. And that's even in the crossing. The street is wide, the cars go fast and it's often not well lit. Being in a wheelchair I'm often not that visible to incoming cars. I had to get to the other side a lot of times through my years in law school often with no pedestrian crossing in sight for blocks and blocks. This is how the bus taking me to law school would go. At least until this semester. In went on University Avenue coming from Downtown where I live. On its way back it took 2nd avenue, a tiny street that splits from it and then merges back into it soon after. That's where the Law School is. For years the bus stop would drop us off on University Avenue, and we had to cross that street and then 2nd Ave to get to school. With  no way to safely get through students like me got in the road waiting for the cars to stop so they can proceed further. And the cars would rarely stop. A lot of people would just force themselves into the next lane, forcing the traffic to halt. I didn't have the nerves to do that, so I'd tell the driver to just take me around. And the way that stop was located, it had a lot of vehicles coming fast from around the corner after the sharp turn. For many years I wondered, why didn't anybody put a crossing there. Or lights. Or a sign. People after all did it every day. I spoke to the Dean's office. I expressed my concerns to the professors. It was an accident waiting to happen. But you kind of accept it as part of life- This is how the bus goes, what are they going to do? I need to get to school regardless, being it that I have to allow additional 30-50 minutes for travel or risking my life by attempting to cross and then thanking my lucky stars that this time I have made it. Going shopping at Publix also involved crossing that road to get to stop, a task particularly difficult if you have plastic bags with groceries hanging from every bar in the back of my wheelchair. So why am I sharing all these fears with you? Turns out they did do something. No lights, no signs, no crossing. They just changed how the bus goes. There was never much of the reason for it to take the turn to West University for that small distance anyway when you think about it. All you have there is a bunch of houses. Imagine my surprise when I've learnt that the bus system decided to ditch the route split all together. It goes up and down 2nd Avenue, by the law school. No more planning, strategizing how to get across, no more worrying about it all morning. On Sunday I can even go shopping and get home safely. It's funny what things you accept as part of your reality because that's the way it has always been. I guess that's a lesson every day.

Monday, February 3, 2014

The survey

You'd think that University of Florida took great care of me since I landed in Gainesville. I was a foreigner- I didn't even know how to go about finding an apartment here, not to mention I didn't know what to watch out for. Admittedly,  I also had "special needs", as dreaded as that term might be. You'd think that someone fresh off a plane from Poland would have somebody from here to guide them, to help move things along, also given that my mobility is limited. To help me settle in or get situated. Unfortunately that wasn't really a case. I was given a copy of the apartment rental guidebook and sent on my way. I always say, if my parents were not with me to drive me around town and look at as many complexes as we could squeeze into that week we were all here, I would never had made it. Yes, I tried to figure out how wheelchair accessible some of those places were, but the most common answer was: "I don't know". I understand, that the things I ask for are not the most common a leasing agent hears. Yet, many times we'd show up at the doorstep of a rental office only to find that yes, while they do have units on the ground floor they all have a really big step leading to the door. That getting into the laundry room would be a problem. That while they do have the floorplan I was looking at, the units are actually upstairs. That the bathroom door is too narrow. That the shower cabin is too tight for me to even crawl into. That none of the cabinets are within my reach. Later on, I discovered that knowing if a place has a bathtub or shower was very useful to. A lot of times we went out to these places and wasted a lot of time coming back empty handed. It wasn't so much about having grab bars in every room and a roll in shower, but understanding what I'm up against.  Those of us with limited mobility need to figure out if they can make it in those surroundings. And to every person it may mean a different thing. Nobody understands your disability better than you. I wasn't looking for an ideal place. I was looking for a place that was good enough. And surprise, surprise- I may have not known how the market worked, but these companies would often make  lot of promises only to get me to sign. They were not affiliated with the university, but I guess this being a college town gave me a false sense of security. My first lease ended with the campus attorney getting involved and me moving out after two weeks or so, although losing my redecoration fee and deposit in the process. They had one of the high threshold groundfloor units. I was about to start school next week. The very young lady in the leasing office promised me a ramp to go over the doorstep, but a day or so after signing told me that the property manager refuses to have one in place. That if I need one I should hire and pay for a contractor, because she's not going to. That was not 1974. It was ten years ago. I was reminded of this story when a friend hired by a company that runs multiple properties told me about her work  that involved collecting all the data from the apartments she needed to asses their value. And I thought, if the type of data I needed was readily available, the process of selecting an apartment would have been quicker and less stressful. And then I thought, I created the Florida Disability Access and Awareness Foundation precisely for that reason- to gather information and assess the scale of a problem. Not to judge or to point fingers- but to give people like me the data they need to make an informed decision. The ADA disagrees with me of course, but I don't think of accessibility as a one size fits all scenario. I gladly traded a roll in shower for a bathtub for example- because I'm able to crawl into one and I'm more comfortable if I can stretch out in warm water. My take is- find what works for you. And the more you know, the better decision you can make. Originally we wanted to start with local businesses and start from there. The problem with that was, we'd be asking questions the managers are rarely prepared to answer, they probably haven't thought about since their location was  last remodeled, they may not like the inquiry and they are rarely there. The benefit of starting with apartments is that this is the type of information leasing agents themselves can find useful, they are used to talk about the state of their apartments and given the year-to year reality of the industry they walk through them plenty. And so, we've been contacting the property managers directly. The response from the big companies has also been amazing. One of the biggest will send our questions to the property managers as an electronic form. The idea is simple. Ten or so questions and a uniform format.It sends a message that FDAAF still exists. That the community improvement is our goal. That we look to it for feedback and support and we encourage everyone to contact us and get involved. Only then we can grow.