It happened last Thursday. I was going ready to go out and then all of the sudden the lights went out. I didn't even bother calling the utility company, from the looks of it all of downtown Gainesville fell into darkness. I think that was the third time I was without power this year, yet the other instances didn't seem as severe. Usually you could see lights on the other side of the street, or somehow one part of my complex remained unaffected. This time, everything was pitch black. Total darkness. From time to time I would see people with flashlight going pass my window. I'd hear whispers and laughter. For a minute I pondered the implications. The milk that felt like it was going to go bad soon was probably now a throwaway. Then I thought that if this went on I really had no way to boil water in. I don't really know why I was concerned with boiling water, but it did come to my head. Thee only kettle I had was electric. Then I realized that it would have not mattered anyway. I don't have a gas stove, everything is electric. I then thought about how much we rely on electricity without a second thought. My microwave and my coffee maker, and my toaster oven- the devices I use every day, now useless. What I didn't think about was that I had no crisis supplies- no candles or flashlights of my own. My laptop would die after two hours of battery use, I thought I'd conserve that and my Blackberry would shut down eventually as well. What would I do to entertain myself if this continued? One thing I wasn't was scared. I didn't mind the darkness really, my eyes got used to it quickly and when I stepped outside the world felt bizarre. My upstairs neighbors seemed to be having a blast on their beach chairs sipping wine. I thought about sleeping through it, but I was in fact hungry. I called my friend Victor to come and grab me so we can explore this quasi post apocalyptic world together. By the time he got here and I locked my apartment the lights went on. But that wasn't the end of it. The businesses all throughout the area were still affected- some shut down, some still without power. One thing it managed to do is upset are weekly routine. Thursdays are spent at the Top. All the city's movers and shakers go there for cheap drinks and great company. And yes, I complain about their handicapped bathroom quite a bit, but the food is good and the place is quite a fixture on Gainesville's map. And yes, once a week I don't mind grabbing a two dollar rum and coke. I write about routines a lot- how I have been subjected to them through years of rehabilitation as a child, how I rebel against them and yet- they give me comfort. My going out habits are also repetitious. By the time we got to The Top it turned out they didn't have the power inside. At first they proposed to let people inside to get drinks at the bar, cash only, but then someone realized they couldn't even do that. As much as I'm the one always telling my friends: we need to try to find new things, even for me something didn't feel right. We had to find a different venue. And I was still hungry. My friend decided he wanted a burger, just not from a burger place across the street. We decided to go to Boca Fiesta- a faux Mexican restaurant particularly popular with hipsters. I have to say, I've been wanting to have scallops at Top for days, but what can you do? My friend grabbed a mojito, I had a Margarita. I keep reminding myself that adventures are good to have- even culinary ones. Nice company, music, new people, I always tell myself I should do it more often. Perhaps declare Thursday the "anything can happen" day of the week. I ended up having a blast, although I felt justified not to blog that Friday. The Blackout made one interesting evening- although it didn't go quite as I planned. When I bumped into my friend David the next day he told me how much fun his blackout evening was. "I wish it lasted longer"- he said, and I can't say I didn't understand where he was coming from.
Monday, May 20, 2013
It always takes me some time to roll up to the door. It happened in the past that by the time I got there a person who was waiting for me to open already got tired of it and walked away. Sometimes, 20, 30 seconds after the last knock I get to the door and franticly open, yelling "Hold On!", nobody is there. If it's the postman with a package, I then need to call the postal service and arrange a different day to try it again. There is no way for them to get in touch with him and turn him around. If it's the courier, he's probably left in at my apartment complex' leasing office. It'd be quite hard and time consuming for me to wheel around back and forth balancing a heavy box on my lap, although I did manage to bring my 17 inch laptop home in the box all by myself once. There's never a good way to position it on me and there is always a risk I will drop something. Luckily, I managed to have the maintenance workers bring it up to my door when that happens. If it's food, I've decided the safest way to go is to just wait closely by the door. It's usually 15, 30 minutes, always under an hour. I can spare that.
The problem with FedEx, UPS and USPS is that they deliver throughout the day. I know it's different in some parts of the world, but here they don't even give you a time window. All it typically says when you try to track it online is "by end of the day" which means anything from 9 am to 5 pm. Living in this apartment for as long as I have now, I was able to narrow it down a bit. I would guess that the mail is delivered around 12:30-1, while the couriers come sometime between 1:30-3:30. Those are the times that, if I'm expecting something to arrive I'm trying to be somewhere in my living room. I avoid being in the restroom or my bedrooms typically, because rescheduling US Mail particularly is a pain that I'm trying to avoid at all cost. It helps to know people who deliver your packages. I'm on the first name basis with my UPS guy. He knows I'm in a wheelchair, he'll bang on the door and call me loudly for a bit to make sure he doesn't miss me. It has happened in the past that he was able to wake me up when I was taking a nap. For that reason alone, UPS is my service of choice. I've had some issues with FedEx. I don't know if he was in the hurry or just didn't want to deal with me, but I know that a few times while I was inside and wating nobody bothered to knock on my door, yet a package was delivered straight to the office. I didn't even get as much as a door tag telling me that it's here and where to look for it. My coffee orders come through Fedex, every few weeks I get a supply of enerrgy drinks and recently I discovered that I can just order basic household and grocery items from online pharmacy stores, so I get them quite often. Recently both Fedex and UPS have teamed up with the postal service and while I wait for a smaller package to arrive at my door, often taking time away from other things, it ends up in my mailbox. There were times that I had things arrive unexpectedly and then days when I waited in vain.
Regardless, my own experiences got me to think how nobody ever expects a person with mobility issues on the side of the door. The more stressed I am, the more tense I get and it actually takes longer. Perhaps it would be a good policy to extend that courtesy. That extra knock... That extra minute at the door, because you never know, somebody like me might really need it.
Thursday, May 16, 2013
Some thirty years ago Geri Jewell made TV history. She was a comedienne with Cerebral Palsy who landed a recurring role on American prime-time sitcom, "Facts of Life". Apparently there was some talk to have her part expanded, but it never materialized. Some say, her presence made viewers think it was going to be another "very special episode" where characters in a very popular trend for 1980's television were faced with some then current social or health problem. I believe Jewell herself later explained that she had problems with her agents. I didn't know of her when the show aired in America, I was 4, maybe 5 at the time and it wasn't shown in Poland. When I was 12, I would watch the show on British channel Sky One, every day. It was one of my favorite things on TV and by watching it (and Diff'rent Strokes, Bewitched, Mr Ed and I few others) I've learnt to speak English. Quite honestly, I didn't not read about the impact Geri Jewell had, or might have had on television and pop culture. I wasn't really thinking about it until recently, when we started following each other on Twitter. Her story obviously hits close to home. She may not be in a wheelchair, but like I she has Cerebral Palsy. But think about this. This was thirty years ago. So many things have happened, so much time have pass. Still, Geri Jewell and her role on "Facts of life" is about the only example that people can think of- if they can think of one- of an actor with a disability present in our pop culture. We talk about awareness, we talk about inclusion. We have passed the ADA. Still, decades later- we don't really see individuals with disabilities rolling up the red carpet or gracing our TV screens. And I don't mean just my disability.Pretty much any physical condition would do. Don't we have actors with disabilities? Have we made no progress at all? Yes, we have characters with disabilities on TV popping up from time to time. They are played by able-bodied actors, so that when it's convenient, they can get over it, jump out of that chair and do a fully choreographed staging of "Safety Dance". The actor who plays Artie on Glee is apparently the best dancer of them all. I know I've touched on this before, but I find it odd, how they make him stay in the wheelchair for all the live performances and interviews if he doesn't really need it. Yes, I know they all stay in character, but it still feels like it's cheapening the concept. For me, a wheelchair is a device, an accessory that I use- not by choice. But I'm fine with how I am, and I'm happy with my life. And I always said that perceptions of disabilities will change through pop culture. Why is having a disability still such a big deal? The more we see something, the more "normal" it becomes in my mind. The more accomplished, successful people in wheelchairs, on crutches, with limp you see, the more likely it is that message gets through, that we are not all depressed, sad and lonely praying for cures all day long. To get there we need to see diversity- also in terms of mobility. I'm bringing this issue again for a reason. Michael J. Fox, another 1980's icon who has developed Parkinson's since his days on "Family Ties" returns to TV this Fall with his new show. I expect it to be hailed as a breakthrough and iconic like Jewell's role was. In fact I hear that it was already picked up for a second season without airing a single episode. Perhaps I can forgive NBC for cancelling Smash, just because of this (Although probably not- Save Smash!), but I hope that this opportunity will not be wasted, and that it will pave the way for more personalities with disabilities in our media
Monday, May 13, 2013
I guess we could waited longer. And longer. And then some. I'd be the first person to tell you that I wanted everything to be done before we showed our creation to the world. I wanted our website to be perfect and to not mention a word to anyone until we were all satisfied with what we have agreed on. This was one of my greatest fears- to launch a project that feels half-baked. We only have one chance to impress the world, and there are no do overs in life. Yes, I was hoping things would go faster and smoother. But then I realized, we could have just as well waited and waited forever. There would always be missing no matter how much time has passed. Our passionate team would eventually loose the fire, the spark and eventually move on to other projects. Whatever we have now, at least for the time being has to be good enough. And we'll fix things as we progress. This week we have announced the start of Florida Disability Access and Awareness Foundation to the small group of our Facebook friends and followers. Somehow, the word got out outside of Gainesville and that's when accusations started. I read that FDAAF must be a scam, because the Board member section of our website is not yet finished. If you want to know who people behind FDAAF are just take a look at the Florida's Sunbiz website, the official listing of corporations where you will not only find our names, but also addresses and the articles of incorporation. It is true that we don't currently have a 501 (c) 3 status- although we are registered as a Florida domestic not for profit corporation. 501(c)3 determinations take often months and cost about $800. It is fairly common practice for new nonprofits to be fiscally sponsored by another entity that already has the status, allowing them to use it for tax deductible fundraising. We are fiscally sponsored by the Jordan Klausner Foundation, a Gainesville disability nonprofit that has been around for over 12 years. For quite some time I served as their Associate Director- If you're interested in JKF's status, please visit the Guidestar website that pulls the information from the IRS registry. JKF also has an amazing history of being started by a UF physics professor in memory of his late son who like I had Cerebral Palsy. Within ours of announcing the launch of FDAAF on Facebook, I was accused of running a scam. That I had to been paying myself and the board outrageous saleries or that I used a "kid in a wheelchair" to drive donations. So far our account collected 0 dollars because nobody gave us any money. Everybody in the foundation is currently on a salary of 0 dollars as well. I guess everybody is always thinking that someone else will make the donation, so they wait and don't make one, but then the other people don't as well. The person in the wheelchair- is me. At 33 I'm hardly a kid. I don't use my image to make money- quite the opposite- I'm not afraid to use my image and the position it took me years to build as a Florida and DC attorney to stand behind a cause I believe in. I understand that there is some distrust in internet campaigns and nonprofits, many people were burnt, but how can I convince you? Some people really have good intentions, and having a disability myself and being an attorney I think I may be uniquely positioned to try to make a difference. Not everything you see is a scam and many, even established causes suffer today because nobody trusts them enough give them money. But if they won't - who will. Still, I'm a bit surprised and taken aback by the extent of cynicism I face building this venture. Some caution is always advised, but I noticed that some people will nitpick and search for conspiracies no matter what happens, and even when they are proven wrong - it's clear that they were not looking to donate anything either way. All I can do is be as transparent as possible.
The following is a collection of articles about me from the Gainesville press http://blog.lawyeronwheels.org/2012/01/in-press.html This is a video about me from last year when I first talk about then vague idea of starting a nonprofit. If you're looking to make a donation, please not that as a new structure we really need support. Your gifts are collected through the Jordan Klausner Foundation and are tax deductible
Thursday, May 9, 2013
I am a man on a mission. I'm hoping to get more attorneys interested in disability rights, because not many are involved in the field. My goal is to create a system that would educate people with disabilities about their rights while changing the public perception on what having a disability today really is like. That you can be successful and empowered, be like everybody else only... a little bit different. I was hoping that this process can start, and should start I must say, from within the legal profession. The Florida Bar believed that it was too uniform, that it lacked diversity and for those reasons I guess it launched a Leadership Academy. To forge the movers and shakers of tomorrow, to interject new blood and invest in people interested in public service. I thought that it would go perfectly with my ideas on educating the public and creating awareness. I'm both a foreigner and a person with a disability among other minorities I subscribe to. While I didn't think I was a shoo-in, I thought it was worth to try And I thought I could do so much good- the work cut out for me is now much harder.. Maybe it's not that bad- I would have to figure out how to get to the places they hold their classes over the next year. But my commitment to the Florida Bar continues and I hope that one day I'll get to work with them on disability issues. I just hope they don't get overlooked in the meantime. My focus right now has to be on my new nonprofit, Florida Disability Access and Awareness Foundation, because one way or another I will get there. Bellow is the reply I've sent to the rejection email, that states my goals and desire to go forward.
I wanted to thank you for considering me for your Leadership Academy.
I understand the program's limitations, but I feel we share the common
goal of improving both the legal community and betterment of lives of
Florida citizens at large. In your letter you mention all the ways
that an attorney can get involved. Unfortunately this is not true of
all practice areas. When I first joined the Bar I wanted to focus on
ADA compliance and disability rights. There were no sections I could
join. In fact, I did not join a section and was assigned to
"Litigation" by default. Very few attorneys choose to practice in
areas involving disabilities (not disability benefits) and the needs
are great. There are no CLE's that I know of that deal with how to
proceed with clients and counsels with special needs and fellow
attorneys turn to me, as the go to lawyer with a wheelchair bound
birth brain injury for guidance. I know of many people with
disabilities that aren't aware of their rights or that they should
speak to someone or who to speak. In turn, the perception of people
with severe disability like mine, their productivity, ability and
accomplishments is very low. Those problems will increase, not only
because Florida has an aging population, but also because of current
wars the number of veterans with physical or mental problems will
For that reason I have started the Florida Disability Access and
Awareness Foundation. I hope to work with you and the Florida Bar to
bring more ADA awareness, compliance and inclusion. I invite you to
visit the website: http://FDAAF.org my blogpost explaining the idea
and process behind the organization
and a video clip about my life long mission for disability inclusion.
of ways and I invite you to think of ways our organizations can work
together through any programs we can devise. Workshops, lectures,
presentations, perhaps a clinic are some areas that would further our
information and education goal. I look forward to our continuing
Tuesday, May 7, 2013
It's been a busy week. Haven't you heard? We started a new nonprofit. And with it, my stress levels are through the roof again and the fears and insecurities are back again. I didn't want to start another heavy topic today, because I would not want to draw attention away from the launch of FDAAF, as soft as it was, but I wanted to share with you what happened to me last week, if only briefly. As on any other Wednesday, I went to see a movie at the local arthouse cinema, just few steps away from my apartment. It's the college discount night and it's rarely busy. But the audience seemed pretty full when I got there. The film was called"Quartet" with who I assumed was John Cleese, but tuned out to be Billy Connolly, about the residents of a home for retired musicians putting on yet another show and living life to the fullest. And if you looked around the theatre in what felt like life imitating art, there where crutches and walking sticks everywhere. The audience were mostly seniors, very animated about the film, having a blast and very vocal about the scenes they did and didn't enjoy. They didn't bother to filter themselves or think about what was appropriate or what would a stranger think. Neither did the characters in the movie. They were there to have fun. And it made me think of old age as something you don't necessarily need to fear all your youth, but something you earn. A testament of your life. A life full of accomplishment and wonder - a life well lived. And yet, the characters in the film showed no signs of slowing down, they were all looking forward, perhaps more liberated from the constraints of the society, self consciousness and fear. And it seemed to me that so were the viewers. Not reminiscing their past for the most part, although past is something to be proud of and cherished, but being in the now and all about tomorrow. I needed something to get me out of that funk! As earlier in the week I've discovered that Dana Marshall, a Cerebral Palsy and wheelchair champion and activist has passed away I have been in some ways contemplating my own life. There are things you expect when you have a disability as you age if you spend most of your day in a wheelchair. Pain and internal organ problems and more mobility issues. It's something in the back of your mind even when you chase the dark thoughts away. I don't know what will happen- I decided not to worry about it. But as I watched the movie and I glanced at the audience I thought, "Those people know how to live!" Bette Davis, quoted in the film said "Old age is not for sissies". And it rings true, on screen and off.
Friday, May 3, 2013
I believe in giving to the community and doing things that matter. I believe in helping people like me. If there's something positive I can use my skills and education for, I will do it. But I'm also a realist. I wasn't to keen on jumping in to build yet another nonprofit, because I understand how difficult it is to make it work. I've just left a position at one that was around for eleven years, and yet it struggled. A good idea is never enough. Sometimes you put put a lot of work and energy, stress and sweat and tears and even then it simply may not work. Every day you worry about getting the word out, hoping you'll find people who share your vision and mission, you hope that you can convince just enough kind souls that you'll be able to pay the bills to keep running. Yes, an office 9-5 job gives you more safety. And then, you don't feel as guilty, as if it's on you and you only if something happens. Because despite the good intentions, things often don't go the way you plan.
But I know what it's like- I have a disability too, I've been in a wheelchair all my life. I know how frustrated I get if I'm planning to go somewhere- a venue, a motel, a store not knowing how much my condition will get in the way of enjoying my night. Will I be able to use the restroom? Will I even be able to get in? Is there a sidewalk or would I have roll on glass? Is there a safe way for me to cross the street or should I just opt to have the bus take me to the other side? If I go in will I be able to get to all areas myself, or do I need a friend to help me get my order in? Do the owners use handicapped bathrooms and elevators as convenient storage spaces? Do the business owners know or care about the Americans with Disabilities Act, but ADA aside, how practical it is for a person like me to try to get inside? Inclusion comes from people with disabilities being able to do things for themselves. From participating in what their surroundings and communities have to offer. If I know what to expect, I can plan around it and make informed decisions. The more I know about all the different ways I can be included, the less I'm afraid, and the more likely I am to try new things. My wheelchair is a problem, but that's my problem to deal with- the outside world doesn't have to make it bigger than it already is. That is how Florida Disability Access and Awareness Foundation came to be. The mission: to give the power back to individuals with disabilities. Information is that power and education is the key. I figured, we all know how to live our lives and how to cope with what we have, so rather than lecturing people we should just give them tools they can choose to use.
With that in mind, I've reached out to people who have been in one way or the other been involved with or affected by disabilities. All as concerned as I was, ready the share the burden, the stress of making it worked. I figured this time it had to be different. The board that I completed all had unique perspective that we needed to harvest. Steve Sullivan was an architect who knew much more about ramps, streets and sidewalks that I ever could. He shared with me his frustration, that while he was required to abide by the accessibility standard on the design level, the execution and then maintenance was often a completely different story. Fred Pratt is a known wheelchair activist in the area. Local politics and helping the community is his passion. And I was interested in both- his take on things as a wheelchair user, but also if we were going to make it work and benefit the local public we needed strong ties to it. Renee Saunders dealt with disability services so it was enriching to have someone who looks at it from the opposite side in many ways. Danielle Torrent volunteered at the Jordan Klausner Foundation and for years it was our shared passion- working with Cerebral Palsy kids. She was a journalist, now is a PR expert and if there's anyone who can understand what drive this, it's her. Paul Brophy was a business owner for many years. Known and respected he did all he could to make his bar as accessible as possible, including eliminating a stage. After surgeries he faces his own limitations. Those are just the few who joined us and new faces have teamed up with us since.
We chose Gainesville as a starting point: not too big, not to small, to test some of our ideas, but our dreams and ambitions are broader. We want to see if we can build the right type of structure here and then expand it. Ideally in time, with the aid of grants, gifts and programs we'll be able to hire people with disabilities not in spite of their conditions but because of their experience. Hopefully we can create model that we can adopt elsewhere. It's a scary and exciting time for us, but we need help to get started. Please consider helping us spread the word, telling your friends visiting http://fdaaf.org website and donating via PayPal if you can. The donations are tax deductible and for the time being processed via The Jordan Klausner Foundation