I could probably write about things being inaccessible every day. Tales of broken elevators, of me being stuck somewhere, of people kind of caring, but not enough to do anything about it. The same angry write up every week. But then those are the things that happen to me. They happen quite frequently. I'm sorry this blog isn't more entertaining, but that's what my life is like. I face stairs and steps, buses leave me behind, I can't get places or I get upset when someone without a special tag parks in a handicapped spot. I'm on a mission, but this mission is my life. This is my world- and I started the Florida Disability Access and Awareness Foundation to change it. While I may never accomplish this goal- I will surely try. But I have no delusions. It will always be a part of my day as I am the guinea pig, the driving force, the motivation behind it. It's a vessel, a channel, a vision and a dream. And it will never be done. And I know that it's connected to me probably much more than to any of my co-workers, who listen, who understand, who encourage, who cheer along but who never truly experience- because they don't have a disability. For me a disability issue can creep up while I'm out shopping or out at the movies, or going home. And it always hits me directly. And emotions always run high. Please, please, visit http://fdaaf.org to learn more about all the ways you can help.
Sunday, October 25, 2015
Same old story: Macy's broken elevator
Friday, October 23, 2015
Fifteen years ago I was a wide eyed law student at Warsaw University. In my third year, I've just signed up for the American Legal Center, a year long, night class for extra credit. Florida lawyers and instructors would come lecture, often a week or two at a time, to reveal a bit of this strange, new, unfamiliar legal world. It was something we craved from procedurals and crime shows, but that was real life. It seemed as if we were receiving some form of secret knowledge, although realistically we haven't really even scratched the surface, and we couldn't have with such a short program. There was something about these people, confident, engaging, with stories to tell- that resonated with my fascination with America at the time. Mike Seigel who became one of my professors at the University of Florida a few years later delivered the opening remarks. He was not talking about theories, he was speaking from experience. His tales of prosecuting organized crimes essentially blew our minds and we couldn't get enough - and a new world opened itself to us. While in the Polish law program we were used to codes and definitions- this was something that had a real life effect, that had happened, that involved real people and places - and required actual ability and skill. This was a lawyer who did what lawyers do and spoke about it. It vibrant as a film in technicolor. I think he had the most profound influence on me as later that year I went to DC to participate in the international finals of the Philip K Jessup Moot Court. It might sound like a cliche, but with something awaken in me, something pushing to... try, I enrolled in the LLM program at UF five years later. I hope he knew that. We spoke quite a few times. We reminisced. I went to him with my immigration issues, with my admission problems, just to talk. It helped to talk. I've taken about every class he offered, either as an LL. M or a JD student. He was a horrible grader, he could really make my GPA take a dive, yet I always came back for more. Because by the time he was done with you, good grades or bad, you've had a good understanding of the subject matter, you've gotten an education.
When I visited the law school this week, I've learnt Mike Seigel succumbed to cancer. He was 55. It happened earlier in the year, I just didn't know. I stopped by the Secretaries' office to chat about who was still around, who left and who got a promotion and I was coming from a meeting with a Dean. I'm looking for jobs and I'm also trying to get the school interested in teaching disability law. I haven't really been in touch. I knew he was sick, but the last I checked he was doing better and he even went back to teaching. It was really hard to get over, maybe because of my father's recent health problems as well. He was a friend and he will be missed.
Wednesday, October 14, 2015
It's about me.
Disability might be a "private issue" as one of our Wheelchaired For A Day participants have said, but I won't stop talking about. It might not have any actual impact on a business' bottom line to exclude wheelchair users, but I will continue to report on it. Besides, individuals with disabilities might not be a strong and attractive consumer base or a group attractive to cater to, but just give us twenty years. The disability population is growing, the nation is aging and mobility issues concern more and more families. My point has always been that people should care more. Even if it's not something that has a strong economic impact today, notice, understand, pay attention. That's why I started a nonprofit. But here's where the problem lies: What's obvious to me may not be as clear to other people. I must say that my Creative Director has struggled quite a bit to understand how our lofty ideas translate into real world programs and solutions. What is our focus? What is the one thing that we are about that best illustrates the mission. We can't keep getting pulled in five different directions at once. What is it really about and why is that important? Why should the real world care And why I think we are best equipped to do something about it? This past week I spent on passionate debates with my Board Members with disability at its core. We were operating on a number of assumptions. We assume for example that the reason individuals with disability don't go out on their own into the world and socialize is because they don't have access, opportunities or information. I know that was true with me, but how do we know if it's not a choice for many? I could say obvious things are obvious- but I think having some solid data that looks into disability behavior can only strengthen our case. Those are some tough questions, but questions any marketer would ask me and questions I would like to have answers to. I could say - it's about me- the things I struggled with and my take on what's wrong with the world for people like me pushed FDAAF into creation- because I, because we wanted to do something about it. And then the real world kicks in. On Sunday, the Gainesville Sun published my column. I don't think I intended for it to read like a manifesto, but it could have easily be pulled out of FDAAF's mission statement. This was just about something that happened to me on a weekend. How I wanted to get somewhere and I didn't have something. "What a great illustration for your cause"- one of the emails that followed complimented and it got me to think about how all the things that we try to do at the Foundation connect and counter some of bad experiences in my life that have a disability undertones. In that sense, it's still about me, my disability and my viewpoint, because I established it to react to a host of problems I was familiar with in a way that I saw and framed the issue. I'm also currently the only person on the Board with severe mobility issues, and that does two things. It may set a direction for our vision, but also makes it difficult for others to relate to.
Sunday, October 4, 2015
Getting used to it
Our Wheelchaired For A Day project in August gave me a well needed fresh perspective. For the people we asked to wheel around for twenty for hours it was a new experience. Many things were upsetting, some were frustrating. Some participants felt a new type of helplessness they were never faced with before. From getting around, to people's reactions and the limitations of having two hands and four wheels they came back often inspired an amazed. As they described some of their experiences and things they struggled with, they were eager and excited. It was a revelation to them. Rolling around is hard. Outdoors is rarely flat. People can be patronizing. Bathrooms are hard to navigate. Using a wheelchair is a workout. Some places are not all that accessible. A wheelchair can have a mind of its own. I nodded and I smiled, thinking to myself- this is what I've been experiencing all my life, I hardly even notice. A week ago I was faced with a broken wheelchair lift to the auditorium on campus. And I must say, that if it wasn't for my Director of Communications Susan who started an email campaign about it on the phone I would have probably not done anything about it myself. I would have probably said, these types of things happen, what can you do- elevators break down. I would have probably made sure that the manager knew about it but then expressed my frustration and gone home. It was simply not meant to be. The malice of inanimate objects. I'd need to find another way to entertain myself. But then I started to realize, that somewhere in the process of becoming thick skinned and understanding I started making excuses for other people. I begun to settle. I started accepting limitations far beyond the ones that my wheelchair puts on me. Some things are not "all right" because they are simply "not OK" regardless of how new you are to the wheelchair experience. There are things that I must get angry over today, tomorrow, ten years later, although it might be more comfortable and easy to just let it slide. I know I've said before that if I got angry over every single thing that happens to be I'd be fueled by emotion every day. Somewhere in there you need to find balance. But if I don't get upset over things that I see, who will? Where will the change come from if I choose to look the other way? And what point have I reduced myself to practically apologizing for my own existence? Letting things go, getting used to them because otherwise they would heat up goes against how I was raised and what I was taught. There are no medals for just being patient, learning to accept the status quo, biting your tongue and doing nothing. So perhaps instead of thinking "Oh, they're new to this, naive, they'd learn if they had to do it longer" I should be more like them, frustrated, taking note, seeing and thinking. In that way this experiment was a learning experience not only for them but also for me. Maybe I should get back what I have so obviously lost?