Monday, June 29, 2015

Different, but the same

A few weeks ago I was having lunch with a friend who like me uses a wheelchair. His is electric and he operates it with one hand while I enjoy the mobility and freedom of movement my body affords me in a manual, sports model. We talked about what it means to be functional and independent. He believed it meant doing everything people who walk do in the same manner as much as possible. I thought it depended on the circumstances. He was proud of his reputation for stopping a bus that was full until it boarded him the few times he used public transportation. He was at the stop first and in his reasoning just because the driver decided to board him last doesn't mean he shouldn't be on it. He was trying to make a point and I believe he put his foot on the steps so it wouldn't leave until some other people got off to make room for him. It was a matter of fairness. For the most part I agreed- because he was the first one there indeed. But this is something you can pull off once, maybe twice. Always making a point would be exhausting. For me -rather than doing everything like everyone else- it's about getting functionally the same result everyone else gets in the in the end. It's about getting home... safely.

 That specific time aside his other reasoning was that he wanted to be treated like everybody else. My problem with that statement, although nice on principle is that you are in a wheelchair, you are not like everybody else. There are many seats and standing spots for people who walk. There are only two spots for wheelchairs on each bus. There will be times when you don't get to board although you see people jumping on at the last minute. Sometimes the buses get so crowded with people standing and leaning squishing together like a pack of sardines but it wouldn't be safe for me to board. And the whole process of getting the driver to get the people to get off, people coming on, people getting off just takes too long. Sometimes I don't have the time or the energy to make a statement. And there are buses that already have two wheelchairs on board as they stop for me. I wouldn't insist to transfer onto a regular seat just to make a statement. And there was one example he brought up that I truly disagree with. He took an issue with belts and straps. While I always say no to a shoulder or a lap belt - because I don't see them serving any real purpose, I'm happy there are things keeping me in place. His take was- other people don't have seat belts on the bus, so why should I? He has an electric chair that pretty much stays in place no matter what you do to it. I have a light, manual thing that can easily send me flying. The acceleration would have my chair rolling into the isle and all around the bus. The reason why I get strapped down is not only the bus driver/ transit system liability should something happen, but also safety. Mine and everybody else's because getting hit with a titanium frame that just rolled onto you as the bus goes into a full stop has to be a painful experience. I try to do many things pretty much the same way as everybody else. But the truth of the matter is I'm sitting on 4.4 kgs of metal and I have four wheels. I'm heavier, I take a lot more space, so there will be times when my mode of transportation influences how I do certain things or how certain things are done around me. That doesn't mean of course that I don't take offense when I routinely get skipped or if the wheelchair access is hidden away from public view. I guess I try to be realistic in my expectations. I want to be able to do  the same things people who walk do, but I understand if I don't get to do them the same way.

Saturday, June 27, 2015

Build a wheelchair

Here's a bit of a pickle. With my wheelchair bar broken and the back that it supported, sooner rather than later I was going to need a new one. The high end manufactures that I've known of were all European: Panthera was Swedish, probably with the most expensive models on the market, my current chair- Kuschall was custom built in Switzerland, and my mom found an Italian maker- Offcarr and she really liked the color schemes on some of their offerings. All of these were either carbon fiber or titanium with lengthy catalogues of measurements, extras and options. It seems that ordering one of these is an ambitious undertaking. A lot of numbers and choices and I still don't even know which material is better. Back home I could just walk into a specialized equipment store and look at a model. We were lucky with my first Kuschall and what turned me on to the brand- we were able to get a pre-built exhibit show unit for cheap. That chair was of course destroyed when the city bus ran into me- and I think the titanium saved my life. So, as the city was paying for a replacement- we went for a top of the line version of what I had before. This time personalized and built just for me. It really feels that the Europeans are on the forefront of luxury wheelchair experience. Light, fast, stable, durable and extremely mobile.   I could probably still get one through an agent in US, but that would add to the price and wait time. I haven't heard of any American offerings, so I reached out to the man that took the measurements last time. He recommended Tilite- a high end brand I've never heard of before,  but even with it being local it takes ten days to build and seven to deliver. And that's assuming no parts are on back order. Whatever we decide, there will  be some  wait involved. While you can say that all titanium carbon fiber chairs are comparable in their class, I don't think I have that many choices from the US. A few years after I got my chair, Kuschall closed their US offices. I believe the parent company decided focus on uniform industry solutions and leave the custom built market entirely. Why shouldn't I have a nice things just because I'm in a wheelchair, and why can't the nice shiny thing be my wheelchair? We are so used to think of wheelchairs as one size fits all big, grey and bulky embodiment of despair and depression, why can't a wheelchair express my personality? A high class chair is like a Cadillac in my book, nothing to get sad about and the one I have now is bright and yellow. I wonder, why isn't there much of a market for those people with disabilities who just like other groups want to appreciate the finer things? I know that sitting in mine made me feel  good not only because of how comfortable it was and how I could maneuver it with ease, but how it looked. And all of those completely unnecessary extras, like a clock above my front wheel made it even more fun. I like it to be presentable and I like to ride in style. And I know it's something you typically associate with disability gear and mobility equipment.

   But it's going to be a while before we decide, measure and order something. All the better ones are made to order. Who knew that deciding on a wheelchair would be so complicated. My friends are now trying to patch up my old one as my new one will not simply arrive tomorrow. We've decided to put a stainless steel pipe around the broken bar. As luck may have it, it's now too big for the back support clasp to wrap around. Yet another part needs to be replaced in this fixed up, modified countless time  faithful accessory that has served me for ten years. .

Monday, June 22, 2015

Parents on holiday.

My mother spent many years helping me exercise every single day. Regardless of whether  it was a weekday or a weekend we'd be right on that mat on the floor, stretching, moving and turning for hours. But when summers came she'd often send me away for a week or two if not more.The goal was to get me away from the home and out of the city. There was no pleading with her. For me it was a wasted time. I'd be stuck with an aunt or an uncle in the middle of nowhere with nothing to do. I'd end up on my grandmother's farm or a cabin in the woods just counting the days for someone to put me out of my mystery. I was there with no computer, a black and white TV and electricity being often out for hours. For a young boy it was version of hell. I didn't really like going to school growing up (although I was a good student) so I hated the feeling of wasting most of my break on this only to return before classes resumed again. I tried pleading and reasoning with my mom telling her how all of this gave me anxiety but the fact was that the break wasn't for my benefit. It was for hers. She told me on one or two occasions, when I got really upset about having to stay with yet another relative that she needed a break for me. And that we needed a break from each other. It's not a nice feeling when you think of yourself as a burden or a task that people need to take a break from. It frames you as a thing rather than a person. For many years however my rehabilitation was my mother's full time job. My father had an outlet, he had a job - often two- outside of the house. And caring for a special needs child, being a nurse, a therapist, a nutritionist in addition to simply parenting has to get exhausting sometimes. Yes, I know that this is what parents do and they do it with a smile when they come to call. But isn't it emotionally and physically draining sometimes when you take on so much? Doesn't everyone deserve a vacation?

I was reminded of this as my Florida nonprofit was investigating ways to help a girl with a brain injury in my native Poland. A violent incident and a chain of events that followed rendered her with no long term or short term memory. It was a heartbreaking story that made the headlines and we wanted to do something.  Our focus was to see if we can get involved to find a therapy or treatment to get her out of that state. We asked family members to look into her situation. But the information we got was primarily about the mother. Always there, always silent, supportive and trying to  get her daughter back. A single parent.  For a shred of memory and a bit of improvement she gave her life for her daughter's in a sense, trying to get her back for the last ten years. And she might never be as she was. I understand the need to help her, but who's going to help the mother?- our contact said- She needs a break, she's always there. There should be a non profit that sends people caring for family members with disability on vacation. Well, it's outside of what we do, but maybe there should. Because it is hard work, day in and day out. And we rarely seem to notice, taking sacrifices for granted because it's "what parents do". But what parents also do have is a breaking point and they're only human. And this made me think of all the times I was stuck in "nature' so my mom would get what she needed to recharge her batteries. Many don't even get that much I guess.

Friday, June 19, 2015

When a wheelchair bar snaps

A few nights ago I was going to dinner. In my head I was making plans for the weekend and figuring out my meeting schedule. I have a lot going on right now and it gets stressful. Getting out to get some air helps me gain some perspective. I was in my own little world and as I was rolling up to the restaurant my thoughts turned to home and my dad's checkups. I've decided to reach out to my mom for some piece of mind. Then I heard a cracking sound and everything changed. The metal bar my back support is snapped on to broke along the clasp. It's funny when you think about it- my wheelchair is so essential to my everyday existence and yet I take it for granted. I don't give it a second thought. It's just a tool that I use and I assume it's always there. And then it breaks down on me. You can call it malice of inanimate objects. A silly little piece of metal has the power to derail all my plans. It doesn't take much to turn my world upside down for a bit and in an instant. Without my chair fixed I can't really move around safely. As the whole thing swings when I lean back the center of gravity has moved and I struggle for balance. A few years ago the same thing happened. My friends took it to a motorcycle shop to have it welded. We thought it was titanium like the rest of the frame, and we needed to find someone with specialized equipment. As it turned out that bit was actually aluminum. You may think it's strange that a part that takes on so much of my weight is not made of something stronger, but then this type of inflatable back support was an upgrade. It came with a standard back made of fabric mounted on the two rods on each side. Last time they fixed it by putting a piece of metal through the pipe and it lasted in good form a few years.

Only recently it started to look miserable and bent. It was only a matter of time and I guess the time was last weekend. It's going back to the workshop and hopefully it can get fixed again. My friend took my chair from me last night so he can drop it off after work and I've spent all day getting around crawling on the floor. I guess it's the life's way of telling me I need to clean my apartment.  I'm writing this as I'm on my stomach on the floor typing on my netbook. Everything else had to be put on the back burner until my chair returns. I get to slow down and watch Netflix without feeling guilty. Life decided to take a break on me. I could have had been sad about all the things I can't do and how immobilized I feel. But instead of letting this shatter my world perspective I'm taking a break on it and get to play hooky. A day or two like this is fine with me. Longer than that and it will start getting annoying, but for now my schedule is scrapped and my calendar's on pause. I guess it's true what they say: life is what happens when you've made other plans.

Monday, June 15, 2015

"Jurassic World"- the ultimate summer blockbuster

Last Sunday we helped make history. A friend and I decided to see "Jurassic World"  during the first weekend of its run. We now know it's the biggest global opening in history. We were not sure if we'd enjoy ourselves, but we had a blast. It may have have helped that we kept our expectations low, but it was a fun ride from start to finish, an ideal popcorn flic. The critics hated it, but I wasn't bored for a second and the movie felt very well put together.  I wasn't a particular fan of the original "Jurassic Park" film although I did see it when it was first released in theatres. I loved the thought-provoking Michael Crichton book for its characters and moral complexity. I believe I read it twice. To me it was yet another example of the movie that couldn't hold a handle to a novel, but I think it was entertaining. Yes, the special effects were nice, but the plot felt very linear and it never seemed like we got to see enough of the dinosaurs and what a park. I missed the third one entirely and I saw the second one at home when I bought it as a box set DVD after it patiently waited on a shelf for a few months. I don't remember it too well, either. I seem to recall a Godzilla like vibe toward its third or fourth act, when a dinosaur destroys some harbor town. I do remember it was different from the second Crichton book, but in contrast I don't think I even finished that one. By the time the third movie came along, with Spielberg handing the franchise off to another director which signaled to me that "Jurassic Park" the franchise was suddenly relegated to a B-movie status. I've had my reservations about this one as well. Primarily, because once again it wasn't directed by Spielberg- and it's not because I think of him as an amazing and irreplaceable director necessarily,but it's a good indicator of how invested the producers are to give the movie its every fighting chance. Secondarily, because the last two movies were not that good,  they didn't do that well at the box office, the franchise has been dead for many years with very little interest in it and last but not least what story could there possibly be left to tell. 20-something years ago I was there for the first one. My brother and his then-girlfriend took me to see it, after weeks and weeks of crazy promotion from Universal.

Perhaps it's because getting me in a movie theatre sit in early 1990's Poland was complicated. My brother had to pull my wheelchair up the stairs and then pull me under my arms to walk with me to the right spot, so by the time I arrived I've already had enough, but I liked it so much better. I don't do the whole big movie-theater experience very often. Once a year, perhaps if that. I mostly see films at a local arthouse cinema and those are different films all together or on campus, where the films may be mainstream but the experience is different. I also go to a lot of previews, sneak peaks and advance screening- so getting to enjoy myself without having a security guard checking my bags for recording devices was very refreshing. Many people speculate about the reasons for JW sudden success and credit nostalgia. I like it because it was an enjoyable film of a blockbuster scale. It wasn't a superhero film, which I don't particularly like and all seem alike to me, and it wasn't playing up the "this is a blockbuster, so it needs to be very long and impressive until it wears everyone down" aspect to those movies that try to outdo each other every year.  I got to see what a working park with dinosaurs would actually look like and the moral dilemmas of cloning explored a bit further. The plot summaries made this one seem like it would be part Species part Predator but it's still at its core the good ol' Jurassic Park, and it works. It didn't drag in in its third or fourth act on a thin plot, the cinematography was crisp and the music made it feel epic. In fact, some people felt it was a bit rushed. First and foremost I got to sit with a big bag of overpriced popcorn and a Cherry coke and relax.  Yes, I'm sure my acid reflux will thank me later but I needed it.

It felt like such an all- American experience. For the last week I was cooped up at home writing contracts, worrying about my father's health and then- the bar with my wheelchair back support snapped. There are very few movies that don't try to be too intellectual without being stupid and to me that was it. The last time I had this much fun was when I was watching  "Guardians of the Galaxy" a surprise gem of which I've heard nothing prior. Another film with Chris Pratt- an actor who's becoming a household name and watching him get there is fun in itself. Fun. I think that's what made this film for me. It seems too often blockbusters are too occupied trying to amaze us, rather than keeping us entertained

Friday, June 12, 2015

Stairs- The final frontier

In the last few weeks I got to see two movies  about people suddenly stricken with mobility issues that in turn made me think of my own. Characters that either temporarily or permanently and increasingly over time begin seeing getting in out and around their own apartments as an ultimate challenge  took me back to my childhood years in Poland and Hungary and say "I know what that's like". In "Take Care" now streaming on Netflix, Leslie Bibb plays a busy an active career woman that ends up injured in accident that leaves her with both of her legs and an arm broken. She's proud, she thinks she can do it on her own, but she really can't- and staying in an apartment all by herself, up on the floor turns out to be not such a great idea, as she struggles to make herself a sandwich with one hand or even use the restroom. She was counting on her friends to be there for her, but then none of them really decided to drop everything just to cater to her every need. Bibb's character ends up having to learn to ask for help and understand that she is limited. In playing up the "Taming of the Shrew" aspect of the film, she ends up crawling up  to her neighbor's door, a man she had nothing but  unpleasant exchanges up until this point, to have him make her a sandwich. The movie's funny. I didn't know much about it, as Netflix just showed it to me as something I should watch. And Bibb (Popular, GCB, About A Boy) is one of my favorite TV actresses. The only show her presence can't suade me to watch so far is "The Odd Couple". I had a few laughs, but then I couldn't help to zero in on the disability portrayal aspect of the film and ways I identified with main character's predicament.

 A lot of film's humor comes from her not being able to do many of the things she used to with just one hand- such as opening the refrigerator and anything in it - and how she tries to figure out how to make things work with her until she guilts her ex boyfriend into assuming a role of a nurse of sorts. We see her friends struggling to maneuver her on the stairs like a piece of furniture with her legs fixed straight. And that's funny, because you know that for Franny this is just temporary. In a few weeks she'd be able to get on with her life and laugh about it as a bizarre thing that happened to her. It wouldn't be quite as funny of course- if somebody had to carry her down the stairs every day. And as soon as this thought popped into my head I started thinking about my own childhood. Like the weeks that my legs were in a cast, fixed spread with a stick between them and how much of a production it was to movie around. But then, my every day life was challenging as well. We were lucky to have an elevator in our building of course, but every time I went to school or stayed at a rented apartment in Budapest I had to face the stairs. And it's something I would get all day. Either by having my parents grab me under arms and walk up or like they showed us at the Peto Institute- have me face the grab bars and go down sideways- it was something I thought about and dreaded all day. It was exhausting, painful and long. After you walked down and walked up in the evening, you didn't want to try it again or go outside that day. And every time I took a trip- with my class back home, across Europe with my parents or the first time I visited my cousin in Las Vegas, one thought would never leave my mind - what would I see there- as I braced myself for yet another challenge on the stairs. Both my legs are spastic- my knees only allow limited movement so I get tired easily. My right hand is spastic as well. I ruined countless pair of shoes pulling my feet up an over a stair as I dragged them. I remember calling a particularly impressive flights of stairs my Mount Everest. I'd have to conquer them to great satisfaction and exhaustion. And just like Bibb's character I  get by with only one fully functional limb. But  let me tell you- if you have to brace yourself for something every time you go somewhere just to get there - it takes so much fun out of doing whatever you get to do when you finally make it. Life shouldn't be so hard. But let's face it. We live in the world created by people without mobility issues for people without mobility issues. For most of them, any challenge it's just a passing inconvenience. But- as we grow in an aging society- disability will end up affecting more and more people and instead of an whimsical interlude you can look back on and laugh, it won't be something bed rest can fix.

2013 American Community Survey states that 13.4% of the Florida population has a disability -increase from the previous year of 12.9%. The national statistics are alarming as well. About 56.7 million people — 19 percent of the population — had a disability in 2010, according to a broad definition of disability, Over 2 million more than in 2005. More than half of them reporting the disability was severe, according to a comprehensive report on this population released by the U.S. Census Bureau. This percentage has increased compared to a study in 2005. Those numbers are only expected to grow.

This is why I started the Florida Disability Access and Awareness Foundation, to promote more accessibility and positive images of people with bodily challenges. I encourage you to visit  if you haven't already.

The second movie, "5 Flights Up" stars Diane Keaton and Morgan Freeman as an aging couple in New York. It might still be playing at a local arthouse cinema near you. The pair decides to sell their apartment, where they lived for decades and had their relationship blossom in an area that  is now an affluent part of town. Walking up the stairs becomes increasingly a problem for the man as well as their 10 year old dog - so they decide to move to a place that they can me more comfortable in. Having settled in their nest they struggle with the idea of a move. SPOILER ALERT: In the end- as they reminisce about their history - they decide not to sell. That part of the plot is pretty much unresolved and it serves for a feel good ending. They will probably have to go on with the sale, or install a stair lift. Or do something else, because neither the man or the dog are getting healthier or younger. I know that the movie was going for a powerful statement about not giving up to age and physicality and the importance of roots and memories. Although the characters decide to live out their lives "their way" unaffected- in reality they could be independent so much longer if they addressed the husband's  mobility in some way. Sticking to your guns is important but so is- the quality of life. And this in turn made me think about all the stories about people in wheelchairs  stuck in their apartments for days, weeks or months, because they didn't have an elevator. And then I remembered how my dad was considering swapping our apartment for something bigger, that I could wheel around easier. We didn't do it in the end, but the idea was to find something closer to my high school and prep me for a lifetime in a room next to my parents. Funny how that turned out. 

Monday, June 8, 2015

Whereas henceforth witnesseth.

The quality of legal drafting  in America got apparently so bad at one point, that my law school -many years ago- introduced a mandatory class for second year students. The purpose: to get them to write in English again, rather than some form of medieval legal jargon. I'm not sure if it's common practice throughout United States and what other schools do, but I have to say that the lessons from my Legal Drafting course are some of the few I still remember from my days at the University of Florida and use in my every day work.For the first few weeks we focused on grammar exercises. That worried me initially, but amazingly enough I got the hang of it pretty quickly. We've learnt why passive voice may create ambiguity. It doesn't tell you who is the one actually performing the action. Objects don't simply have things done to them, it's people who do those things. I was taught to break up sentences in Contracts and Pleadings to express just one point. To not be afraid to have many paragraphs and headings;  To not fear whatever term I coined to name a Party multiple times in one paragraph instead of any gender specific designation.  I was taught to to never use "shall" in a Contract. If a party is doing something for their own benefit, the present tense is appropriate,  if it's a promise to the other party I was required to use will.  "May" was reserved for situations when a party had an option to do something at its discretion.  I know the difference between my recitals and obligations in the Contract. How some passages have no active, binding role on their own, but instead help to explain the background, the intention, the position of the parties.

There are of course many ways to write perfectly good, enforceable Contracts, but that's the way my instructor would run the show. To her, drafting was a form of art. And the point of the document was not only to assist the Court in interpreting what the parties' intent was and what actually happened but to tell a story. So that the parties themselves can look at it and now what to do when, without a need of a lawyer or a dictionary. She made us think about how to effectively group issues together. In what part of a Contract should a specific issue appear. Is that the most effective way to phrase it? Should I divide it up and introduce subsections? Using what key? How does the narrative flow from one paragraph to the next? She made us think about every single sentence. And I became a tortured man. In the two week period that we had to turn in my final assignment I redrafted mine six times. And at the and I still wasn't satisfied. That's the way I am with my drafting work today. I always feel like moving things up, playing with words and sentences and orders and grouping and it never feels finished. It's like a puzzle but there isn't just one answer. But I have to say that those months in the drafting class made me never use a form and a sample and put a lot of thought and time into every legal document I write. Her preference was that a heading should always have at least three words and that by looking at it you should be able to tell exactly what the section that follows is about. I still do what she taught me. I draft, I divide, I  group, I move things around. There's a lot of good ways to write a contract, but if it doesn't tell you who's doing what to whom when and in what form it's not doing it's job. Another thing I was taught to watch out for is when some other party is to perform an obligation under the contract. If they're not a party and they're not signing it, they're obviously not the ones committing themselves to perform. We were always taught to make it about the parties doing things or promising things to each other.

 I get slightly irritated when I see words like: Whereas, henceforth, witnesseth. My best guess is that lawyers have been using them for eons and nobody told them not to. That's just the way things been always been done, so for some people it became part of what it means to be a lawyer. But those words are not even present in today's English anymore, what is the point of writing a document that nobody can understand? Perhaps people think that these archaic words and necessary, they are not. And they don't accomplish anything. I would think that new lawyers who know better join established law firms and are told to write like this, because that's the way they have always done things there. I've also heard that its the clients who sometimes  are not happy with the use of plain language because they don't sound "lawyer-y" enough. All I have to say is that once again as I redraft somebody else's  contract that is riddled with legalese but missing some essential information, that may have been downloaded  off the internet but it may have been a lawyer- I'm thankful to my drafting professor for giving me a skill, that years later I can use again and  again. And every time I see a document like this I want to say: Your contracts don't have to look like that. You're allowed to use English!

Wednesday, June 3, 2015

The Call

I live across the world from my family. It's not temporary and it isn't likely to change. We chose it to be that way. They're there, I'm here, with only Skype and email between us. Over the years I would sit on pins and needles waiting for any shred of information  as my dad underwent his heart surgery and my brother became a father. And you wonder, and you dread the moment that something bad happens. When you get the call. Until you do. Over the weekend I received an email. Nothing more that a subject. My grandmother passed away. My mom was bracing for it, and I guess she made it through another week.  I hoped she'd have that one more fight in her. With a simple sentence reality came crashing in. It was strange. Just one line of text and yet so definite,  so final, so unapologetic. What else could you have said anyway? For the next few days I couldn't really focus on anything and find a place on myself. Should I be calling home, taking my mother away from her preparations just to ask how she's doing? I think the answer's obvious. I'm here, they're there. It's not an easy email to get but I'm sure it's much harder to write. Should I be doing something? Such is a life of an immigrant I guess- We might live in the XXI century, the distance is voluntary and all the world's technology is supposed to bring us closer but the feeling of disconnect and isolation never lessens. All I can try to do is make something of myself and through my work make my family proud.

Monday, June 1, 2015

Nature is not for wheelchairs or the accessible beach

The worst feeling about visiting my grandmother's farm was that I could never get around by myself when I was outside. The grass and the dirt made it impossible for me to move my chair with my own strength. My wheels would either be stuck or spin around in place when I tried. Yet my mother would always want me to be out of the house, to get some sun and some air. She would haul me out there, put me in one place. I would then just be there, stuck, "out in the nature" until we were done. Sure, if I wanted to be in a shade or try some different angle, somebody would move me. For most people being outside is about being active. Running, exploring, being on the go. For me every movement becomes a production. Unless there's a pavement there I have to rely on other people to move around- and often struggle. Whenever I was on the grass or out in the sand- having to wait for someone to help me, but most of the time, simply knowing I can't do it- made me feel very defeated. An odd feeling I can't fully explain. Stationary. I was treated like the characters in the novels and the movies that after years and years of being locked away in a house - because of some unspeakable condition finally get out into the world. Like precious cargo and a burden of sorts. Although I was a child I felt what I assumed being very old must be like. Unable to do things. And it was more obvious than usual. It's not that I envied other people getting to chase and run or that I wanted to spring out of my chair and join them. But I didn't want to feel so low on energy and useless.

 A lot of American beaches allow wheelchair users to rent a special chair that makes it easier to get around on the sand. The people that are with me struggle less. But to me, they're not really much different from when my parents would get my stroller or chair all the way to the water. With the big wheel in the back and my behind lower than my feet I still couldn't do it myself, but it was easier push. My friends could set me here or put me there, or even push me around, but I felt passive in the whole process. I would observe and have things happen to me, but having to once again rely on others doesn't make me an active participant in something after all called an activity. I try to avoid doing things that make me feel bad. Circumstances that once again make my disability an issue front and center, limiting what I can and can't do. Stationary or unable once again. So, when the Sabrina Cohen Foundation launched a campaign to create an "accessible beach" I was skeptical. I wondered, Are they going to pave the whole thing? I guess the idea behind is to make it easier for friends and families of people with disabilities to get them to the water. And at first I thought, how can this be a good idea, they're still not going to be able to get around themselves. Yes, it's not for me and I would never use it, but that's because I associate the term "accessible" with independence. It always takes the fun of any activity for me if I can't do it without my own entourage to wheel me around or help me in and out. Theme parks become difficult to navigate since I always need to bring a friend on whose arm I can lean to help me in and out of a roller coaster because their staff could do it.  I don't mind it once in a while and for a little bit, because I'm out with friends and we're having fun, but in the long run it would get me in that isolated mental state once again.

As I read about the beach project I desperately tried to relate it to my own experience. But then I realized I was wrong. First, by defining accessibility by what I can and can't and would and wouldn't do. Disability issues are much broader and while possibly not inclusive for everyone to the fullest extent of every conceivable limitation a beach like this could still be enjoyed by some people. But more importantly for me a project like this starts a discussion. A discussion about what people with disabilities do, what they should be doing and how we can get them to do more. Hopefully it gets the general public to think about how those with mobility issues spend their free time, what issues they face and what it must be like. The "stop and think" attitude is in turn the core of the non profit that I started, Florida Disability Access and Awareness Foundation (http;// Everything that leads to that goal I will support even if it's about nature, that by its not nature is not really wheelchair friendly. You may read about Sabrina's project on the State Farm Neighborhood Assist page: