Disability TV icons

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

Trust: a key to building a new nonprofit.

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

And sometimes it doesn't work out

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
grow.

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
http://blog.lawyeronwheels.org/2013/05/introducing-our-new-nonprofit.html
and a video clip about my life long mission for disability inclusion.
http://www.youtube.com/watch?v=pVktemZevhg I also invite you to think
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
relationship

Old age is not for sissies

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.

Introducing our new nonprofit: Florida Disability Access and Awareness Foundation

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

Twitter: @FDAAFoundation  Facebook: facebook.com/FDAAF

Strangers you meet

It amazes me sometimes how many people stop me at night thinking I need inspiration and they should just randomly offer it. Do I seem that sad said or lost? Consider last week. I was on my way home when a young man approached me and decided to share his story. "Think beyond the solar system, dream beyond horizon". He explained he decided to take on body building just three months ago. He bulked up and now is so proud of his physique he wanted to share his story with the world. "You're talking to a short orange man"- he said- "People used to mock me, but I wouldn't let it stop me". He did have oddly dyed hair and his skin was covered in spray tan. He was 19 years of age, yet as he said something prompted him to travel and share what he felt was his life experience.  Random conversations like that, about life and purpose as strange as they may be used to happen to me a lot. Some of the strangers I've met became friends or at least known faces or permanent fixtures in my life. I have always tried to take something out of these encounters, because I have always believed no matter how eccentric and strange they may be there is always something for me to learn. So I try to cast my judgments aside, engage and interact with them within their perspective. Even the homeless man who believes he makes the leaves dance on the wind and when he cries his tears makes it rain, because he approaches me with nothing but kindness. Somehow over the years I've ended up with a more settled lifestyle. Not by choice- I used to enjoy new experiences and people, but then I realized that I've been doing the same things on the same nights with the same faces for the last five years. When did I get so predictable and boring?  Some of my friends enjoyed going to the same karaoke every Saturday, predictability gives them comfort. And as much as I love being there and seeing them, I don't want to have a sense that you can flash my life forward 10 years and know exactly how it played out. I guess this is my life-hate relationship with routines. I don't want to have a feeling that a reason I'm doing something is because I've always done it. That I can't think bigger, "beyond the solar system", that I leave stones unturned  and paths unexplored. One of the most inspirating conversations I've had in Gainesville was with a stranger after all. It was 2004. I was on my way to an honors society induction ceremony, rolling down University Avenue for many blocks to get to Mellow Mushroom,  a pizza place that is no longer there. And I met a stranger. He was a soldier who just got back from Iraq. He returned to Gainesville to see his daughter whose name NOVA he tattooed on his arm. I don't remember his name, but I remember hers. We talked about some of the things he has seen, life and what drove him and what brought me here from Poland. About how limited I felt in Poland and how lonely and how he pointed out there may be times I would feel like that again. I was opening myself up to people and life and it's the human experiences I valued and remembered the most. I ended up not going to my own induction ceremony, because we were talking for a good hour and a half. And I think life has a way of reminding me I don't do enough random things and meet random people anymore- in a big way. Living downtown, I rarely have the need to step out of my neighborhood. I'm not on the bus that much anymore and although  I like adventures finding me I will not go out of my way to look for them. I used to have a broad circle of friends, now I mostly see the same faces in the same places.

Until I was waiting on a bus one day. A stranger was sitting on a bench waiting for a different route. We talked for a few minutes, I left him with my card and we both boarded our buses. Just a random conversation that made me feel good, with someone you will never meet again. Until you do. The next day I was getting a haircut at the mall when he approached me to say hello. I needed to buy gifts for my family in Poland and I guess he was killing time when I was picking calendars. And then, not a fan of coffee himself, he watched me drink coffee. We shared life stories. It was interesting for me to meet someone who felt so different from me and most of the people I bumped into around town. A positive and enriching experience I thought, reminded me of how and who I used to be. Someone you will never meet again, I thought, yet somebody who gave me something positive. Until you do. The next day he was attending the same play I was. Isn't this life really strange?

In memoriam.

We've never met. I knew her as @DanaWheels. We connected through Twitter, we communicated via my blog. Like me, she had Cerebral Palsy although I think she had some other conditions as well. She was much older than me, she was in high school when I was born and I believe her mobility was more limited than mine. We first started interacting last year. When I wrote a post about how people on the street tend to assume I'm homeless and sometimes give me money, she replied that she wouldn't mind if it happened to her, but nobody wanted to. When I started the discussion about electric versus manual wheelchairs in which some other users weighted in, I was saying that pushing myself gives me a sense of freedom. She was using a motorized chair because a manual one caused her some injuries, throwing her arm out and she appreciated the ease of use. When she read I was afraid of large strange dogs, she explained that she trained companion dogs for the disability community. She believed I could use one to help me with things, I insisted I wanted as little help as possible, human or animal. In turn, I wondered if she could have benefited from Conductive Education as I did growing up. Perhaps it could have made her more mobile, with better control of her body and as a result less prone  to injury. Her name was Dana Marshall. She embodied what I thought an adjusted person with a disability should be. Not afraid,  not ashamed, with an active life, confident and always standing up for herself. I could always count on her to react whenever I posted something about people blocking wheelchair access,  be it inconsiderate bikers or people in the restroom. We were thinking about working together. She got to my post in which I brainstorm about how to make my town more wheelchair accessible without getting a reputation for shutting businesses down. She explained she used to do ADA inspections and her idea was for her to come to Gainesville. She would roll around town visiting venues and I would be just the attorney, like the lawyers she worked with back home. My new project is somewhat inspired by her story. We connected sometime last year. Then at some point interaction ended. I didn't think much of it, we are all pretty busy people. Yesterday I found posts from her brief stricken husband, by a complete accident. Dana has passed away six months ago. It made me think how fragile life is. For a moment it made me ponder my own mortality and the type of legacy you leave behind. I always have these thoughts when I hear of yet another person with my disability no longer with us. But mostly I thought of what a loss it was to everyone. The amazing things she has done and would have done still, full life, interrupted. Of her husband. And then I decided to email him offering my condolences.