Monday, July 27, 2015

A little girl in a wheelchair

On Wednesdays I usually catch the later screening of a movie at the Hippodrome Theatre. The usher rolls out the seats in the front row for me that double as the wheelchair area, but that day I was running late.  As I entered the dark cinema I noticed that something was different. There was a wheelchair parked next to the screen. Whoever used it obviously preferred to transfer to a regular seat. I used to do that until it was a hassle. The back suggested it was a TiLite- a high end wheelchair brand popular in America. I wondered who it belonged to. I couldn't quite make it out in the dark, but the frame looked small. We were watching a Japanese cartoon, so I assumed it was a child. As I was leaving I was proved right. It was a little girl, most likely not older than 12 out to catch a flic with her parents. As they were walking she led the way. She was fast, smooth, determined and elegant in her moves. At times she turned around and circled around the adults as if to get them to hurry, like she played tag with them. If she wanted to, she easily could have leave them behind, but she would stop, turn around, go back or let them catch up if she got too far ahead. She had one of those things on her front wheels that lit up as she rolled. She was being playful. They left the theatre as I observed. They forgot something and they went back. The daughter was leading again. She was first on the ramp and they followed her across the street. She was animated, they were talking, they were walking, they were rolling, she was having fun. It may have seemed strange that I- a grown man decided to stay behind and watch this scene with people I didn't know, but at the same time I guess they didn't think much of it. I was just another person in a wheelchair. It was amazing to see how natural a person this young was in her wheelchair. It was just a tool for her. Something that enabled her mobility and allowed to express her personality. And she got a pretty good hang of it and exercised control. To her it wasn't scary or intimidating. It just was. She didn't seem to have any hang ups about the wheelchairs or her circumstance like many adults would. Welcome to the new generation: wheelchairs can be fast and light and fun and light up the Christmas tree. And here's my hope: that the disability perception that I try to educate people about through my non profit- is something the adults of tomorrow will accept as a fact of life needing no explanation. I was brought up with the sense that wheelchairs are bulky, scary and final and meant loneliness, abandonment and despair and I always felt I wasted a lot of years before I embarked on my journey to independence. But she wasn't. And kids like her are not. And to me that's amazing.

Friday, July 24, 2015

Farewell, Grooveshark.

There's not too many things Gainesville is internationally known for. University of Florida with its Gators is perhaps one. Grooveshark may have been another. I wondered if I should write about the sad news from the Swamp on here, but the truth is that for some reason it has touched me profoundly. On Sunday night I emailed Grooveshark founder, Josh Greenberg to recruit him for a project my non-profit kicks off in August. I thought he'd be a perfect fit. On Monday I've learnt of his passing. His girlfriend found him that morning. He was 28. He lived across the street for me and we've known each other socially. I've known many people around him, we've interacted in the same circles, and while we may have spoken before I think it's only last year that we started to talk directly and discuss some ideas I've had. It's odd. Facebook indicates we connected in 2011, and truthfully I don't quite remember. It was the year that I became an attorney and a lot of people were buying me shots. When I went to meet with him last year to discuss some investment ideas we've had he was happy to show me around and very proud of what he had built. I was the only person in Gainesville who didn't know where the Grooveshark offices were, I had to ask the woman in the one unit over, because I didn't see the sign. I guess you didn't really need a sign if you were part of the crowd. The funny thing is, I've spent time with these people, I went to their parties and their events, often joked with them as our paths crossed and yet, before last year I have never been up there. I remember going in with a couple of presentations. We wanted his advice and his guidance- which he was always willing to give. He listened, nodded and would say what he thought. We also wanted to pitch him a new direction, a new project to focus on and I guess many people did. When I came up there- it was clear to me that Grooveshark was done. The only mystery was how much  damages to the recording studios they'd pay and can they survive it. Yet he still felt focused and invested in it. He wasn't receptive to much else. I still remember how was talking about a back and forth he had with Spotify. And I can't really blame him. He was 19 when he started it. It was his baby. And he was a young kid, a freshman who made it big. And  I think he changed the landscape of Gainesville forever. Yes, the service that he created broke the law- and I don't think we should judge him to harshly given how young he was- and he paid for it, he lost his company. I don't think there was a way to make it work, given how far the things have gotten. Yes, Grooveshark was a streaming service facing severe, prolonged legal problems and nobody's disputing that. But I also don't get how some sources are unable to separate the man from his creation, and he either has to be creative or ruthless. While Grooveshark itself admitted their wrongdoing before disappearing into oblivion a few months ago it did so much more than any other internet music provider. It created a brand that became synonymous with Gainesville's freethinking, creative spirit. And it wasn't just a brand. It was a community. A movement. I don't think yiy'd be able to understand what it was unless you were here as it happened. People wanted to work for  them to be a part of it - whatever IT was. And I'm not sure it was such a great place to work at in terms of long term prospects, but it didn't seem to matter. I've seen the Grooveshark T-Shirts all over town, I believe long before I've learnt what Grooveshark was. And what it did to me at least felt secondary to the logo and the people who stood behind it. The branding and the community outgrew the product- it was synonymous with innovation and development and that was extraordinary. Over the last few years start ups started popping up everywhere. There are branding agencies, marketing services and digital agencies all over Gainesville. I don't think  that would have ever happened had Grooveshark not started here a few years later. Josh transformed us all in that sense and I will forever be in awe of his creativity. Who knew you can build something in Gainesville?  How many people never follow their vision, the idea, the dream and allow who they are, where they are to hold them back. I don't think they possibly could have been any bigger.

I'm wired to look at the great minds I meet always thinking how we can help one another and how it all factors into the bigger picture. Just recently I told one of my Directors that I was looking to get him involved with our non profit. I was just looking for the right moment, and the right moment never came. We were looking for a technology expert and who better to recruit than Josh Greenberg? But I never asked. And to that she said: Don't wait. And I think it's a great advice in life. We wait and wait and then life just happens. Who knows what the future holds? And then some people just DO while the rest of us WAITS. And that's what he accomplished at 28 just think what his future could have been. I found the news very saddening. A life cut short. I don't know - it could be my grandmother's funeral a few years ago and my father's cancer diagnosis but I've been feeling recently that I'm surrounded by illness and death. Josh's untimely passing is on the loop newscycle covered by BBC, the RollingStone and all the agencies. All I can say is his presence will be missed. It's an end of an era for us in Gainesville, as both Greenberg and Grooveshark are gone. All I can say is he swill be missed.

Sunday, July 19, 2015

New York and the Taxi of Tomorrow.

When you don't follow the news, sometimes you get surprised. But here goes- The Taxi of Tomorrow will become standard in New York City after September 1st. Owners retiring their vehicles will be required to switch to the Nissan N200 and in limited number of cases other hybrid or wheelchair accessible cars. It's a big step towards increasing accessibility in the area, now if there was only a way to have certain Manhattan sidewalks and subway stations follow.... Those who follow my writings may remember, that while for most people New York is an exciting place full of character, adventure in culture, for me it's a mocking reminder of my own limitations. Places I can't get to and things I can't experience. Establishments with stairs, sidewalks without curb-cuts forcing you to go back a block without warning, and the underground rail that's accessible not where you need to go in and out but where it  let's you. During my first visit- in NYC and America- as neither I, my brother or his girlfriend could figure it out- we had strangers helping to carry me out to the surface. I've had hotels that I've booked that advertised as wheelchair accessible and they could have been for all we know- provided I could fly over a flight of stairs to get to the lobby. And in the middle of it all- cabs. In New York City you typically catch them as they drive by. I never had problems getting one coming from a hotel- when the staff just grabs one for me. Going back was always an issue. They see me by myself, they never stop. I guess they assume I'll require a lot of lifting or specialized equipment. In fact, my chair folds and goes into the trunk and I get into the seat all by myself, without anybody's help. End at the destination- I appreciate what they did for me so much- if they stopped when nobody else did, that I tip very well. But they don't know that and they just drive by. I guess they fear they hassle. Once, I tried to stop a cab for an hour and a half before actually contemplating rolling down for 35 blocks to get to my hotel. Yes, some type of mobility-inclusive regulation is welcome and very needed.  The ADA becomes a joke if people with disabilities can't get  anynwhere. So it might shock you to find that I was a bit surprised, when the Court of Appeals ruled the way it did. Being a lawyer means following the principles and the argument however you may feel about it personally. I have to say I've shared some of the concerns that the Taxi association that sued brought up. Is  Taxi and Limousine Commission  overreaching? Are they not regulating too much? Can they tell taxi owners what specific model to buy. And is- as much as I'd enjoy being able to get any taxi that I see going at me- this change prohibitively expensive- given that the cars are costly and the change will benefit a relatively small group of people.

What I think helped in pushing this through is the natural, gradual nature of the transition. There's no deadline, however down the line that all vehicles have to switch over by. The Commission regulates the taxi services. That's what it's for and that's what it did. I'm still surprised that it opted for a specific model and not a set of criteria that a car would have to meet. Taxis are a heavily regulated segment in NYC, locals rely on it for every day commute. It's hard to not think of it as a service if not- utility.  You can't  drive in the city, not really and mass transit is not a viable option for many people. So - what did people with disabilities do to get around? Use a paratransit service ordered in advance? Or get in and out of the subway often blocks away from where they needed to be? Either way- NYC will become more wheelchair friendly over time as a more organic process. Originally I thought that the Commission would agree on a quota, a number - or a percentage. But then I thought that allowing but replacing all the cabs over time will create new groups of disenfranchised riders- that could use some things but not all things that the city offers while getting other owners off the hook. And that's not what the ADA is about. It's there to integrate, fully include, not create new lines of division. And allowing an uneven treatment of different categories of cabs would create a new set of issues. It doesn't matter how small the group may be that benefits from this. Part of the reason the ADA was passed is because the disability community didn't have the strength, the voice- to push for change effectively, fast enough and across the board without the government stepping in. And that's what happened to in a way. The Commission went in, regulated and imposed on everybody. Otherwise it would always be too soon, to expensive, or affecting too small of a population to ever happen. And now it's done. The debating and stalling is over, we can get to doing. Who knows: In a year or two I might visit NYC just to see how easy it would be to ride to Times Square for me.

Friday, July 17, 2015

When a Former Board Member says "hello".

A non profit board by its nature has to be in a permanent state of flux. New people come in with fresh energy, vision and ideas, while others leave to focus on other ventures in life. We have never forced anyone out, but people have left us. I feel they may felt they were not a good fit at the time- that particular dynamic and focus in our ever shifting reality just didn't work. Perhaps, had they applied today it'd be easier for them to find their place. Last year everything was a bit crazy. We were trying to translate the general vision and feeling I had into specific programs, actions, achievable goals, things for them to do. Those were some crazy weeks as we tried to figure out how what we want to do comes together. It was chaos but it was creative. It was high energy and the juices were flowing. I forgot how much I missed dealing with these people until one of our former Board members dropped us a note a few weeks ago saying that he missed it do. I always felt guilty about not being able to utilize his talents back then - and things are not as crazy today- but I came to terms with the idea that some growing pains are natural, the past is in the past and I won't blame myself for things I have no control over. At the same time we try to have an "open door" policy. People who left sometimes say they want to come back, do something in some other capacity and if only we have a project they could jump into, we let them. Because I try never to end things on a bad note- it's often simply the energy that runs out.

 At the same time a nonprofit is seeking stability. There has to be a constant in that ever shifting reality, a trusted team, a vision, a direction, some form of leadership. And a note from our former Director who I still consider a friend made me think about how much we really did accomplish inn the months since he left. Things do naturally fall into place over time as issues crystallize. I've been so hard on myself writing and rewriting our mission, our history our content in ways that are engaging and understandable , figuring out ways to make the nonprofit and all its different plans come together that I didn't realize that things look better from the outside then  they did twelve, ten months ago. I don't think I've given us enough credit. We introduced consistent branding- it's now FDAAF like the acronym of the name and not DAAF like our original logo. Our mission statement is not seventeen points anymore but four sentences. We are a 501(c)(3) nonprofit, one of our main goals last year that really drove everyone insane. Our struggle to deal with the IRS stressed everybody out, working on the business plan side of the filing made all of us want to quit at one point. We now have a product driven strategy. If we decide that there's something we can't  do, because we don't have time or ability or resources we can now move on to the next thing. A year ago we were so focused on the wheelchair map we were looking to develop that when we decided to abandon it we really struggled to figure out what to next and if there even was a next thing for us to do. That will never happen again. We also slowly, but surely built content for the website. We may quibble about it not being engaging enough, but it's definitely in a better  shape than it was a year ago.

Hearing from our previous Board Member did a things for me. It reminded me that what we do has value and although it's still a work of progress it's starting to take shape. It showed me that what we do today is something that people on the outside can get excited about it again. That I can now have some real things for them to help with rather than struggling to find something for them to do. That we are transitioning and while it's not perfect - it's better. And - starting this August- the optics will be even better. Being on the inside I often forget that there's progress and change. And although we may be stressed and jaded - things are slowly and surely coming together, even if at times I'm frustrated with it not coming together fast enough. My Board Member's note reminded me of how things were and how we wanted them to be. I do appreciate his kind and encouraging words- someone outside our tiny bubble of stress who's telling us we're good people and we're doing a good job.

Sunday, July 12, 2015

Free honey

Here's an interesting thing that happened to me Friday night. In moments like that one I remind myself that I'm in Gainesville and it all makes sense. I couldn't  imagine experiencing a thing like that in any of the real, grown up cities, but here everyone feels so much more approachable and direct. It all started when I decided to take a friend of mine on his offer and go see his ping pong partner playing with a band at a local bar. Here's another very Gainesville-like thing- everybody I know is in a band or five and nightlife it's our number one industry. The venue was small, yet packed with people.A few weeks ago it was a different landmark in the city's entertainment landscape. Now somebody slapped on some paint and called it something else. It was hot and crowded so we strategically positioned ourselves closed to the venue. And as the night progressed, most people disappeared. It's been a while since I went to a concert of a local band. I didn't recognize any of the faces or even the predominant subculture. Wow, it had to had been a few years for me since I was in a setting like that. And with how the scene has changed I started feeling a bit old again. The main thing about the music I could say is that it was loud, although I didn't mind it too much. My friend tried to buy ear plugs, which the previous incarnation carried, but they didn't have any. We decided to leave a bit early and get some fast food from the joint across the street. A cheat day for me and my diet, it's something I used to do more often in my going out days when a fun night didn't involve watching anything on Netflix. On the way home we saw a strange man carrying a box standing in front of a bar. "Wait for a second"- he said- "Let me give you something". I really didn't want to get anything from a man on the street. I didn't have any cash, and the last time my curiosity was piqued a homeless person tried to sell me an HBO cable filter for twenty dollars. I imagined myself trying to get out of whatever he was about to show me, spending the next few minutes firmly declining while thanking him, and I figured it'd be easier to just avoid the process all together. But it felt like it was already too late  for that. I was tired, my friend seemed to really want to know who the strange man was and what was inside the box. As we waited he pulled out two jars of honey. Warm for some reason- the premium, local variety that you see at some coffee shops in the area. The  man explained that his son makes money on it and built the brand, while he just wants to give it to people. We took the honey, thanked him and were on why way. But as we went on further we still had our doubts. Isn't this a bit strange how someone randomly gave us jars of honey in the street? What did the man want? Why was it warm? Was it tampered with? Poisoned? You can't help thinking those thoughts, after all someone just gave us something for no apparent reason. But then again, it's such a Gainesville thing to do- he saw us, he had honey, so he gave us honey. And every time I start to think that I'm too old or out of touch to be here I keep reminding myself of those odd incidences. Living in a weird place might not be a bad thing.

Thursday, July 9, 2015

Cerebral Palsy: does it matter if it's genetic?

Here's what's been making the headlines lately: members of the Australian Cerebral Palsy Research Group, based at the University of Adelaide’s Robinson Research Institute now claim that genetics is to blame for up to 45% of Cerebral Palsy cases. Previous research suggested recently that it's the cause of at least 14% and that was controversial enough. For decades it was widely accepted that CP is the result of brain injury before, after or during birth. Doctors were accused of not putting newborns in incubators fast enough, while parents like my mother traced every moment of stress or questionable lifestyle choice during pregnancy as a reason behind it. 45% is of course an odd figure, because it splits the numbers right down the middle. It has the potential of making CP malpractice litigation virtually impossible as every case will come down to what is genetic and what is not and what we can prove. And with little research behind it I doubt we'll ever have the science to know or to build a case that's strong enough. But that's not what I wanted to focus on. As a person born with Cerebral Palsy, I'd like to talk about what these findings mean  to me personally. I can't quite explain it, but there's a certain degree of comfort in thinking of it as something  that happened to me, be it in the first minute of my post-pregnancy life rather than I was always like this. Having that one moment to trace back to gives me however short before and after. As if there was a version of me that didn't have "it" before "it" happened. Like an accident. Like being hit by a speeding car. Like getting a sports injury.

I don't know how other people with CP feel about it and I don't claim to be speaking for anyone but myself- but for me thinking of it that way allowed me to mentally separate myself from it. It was external rather than internal. We of course know that CP is an umbrella term for a host of conditions somehow involving the brain and mobility - there isn't a one size fits all model or explanation and we need to be mindful of that. Different people with CP are affected in different ways, to different extent and with different symptoms so that's why making blanket statements is potentially dangerous. You can't help to wonder though- what can these new findings mean to Cerebral Palsy therapies and research? On one end it can prompt a search for a scientific cure, better diagnostics in identifying and addressing this as a genetic problem. On other- what will happen to all the forms of rehabilitation based on exercise intended to "restore" a patient to norm, if there's no "norm" to restore to? What does it mean to methods promoting use of sheer will to "overcome it" if it's not something that happened to you, but was always part of you, always shaped you, there was never a "you" without it? Do they now turn to science for a fix?

Monday, July 6, 2015

Engaging

Here's a word I've been hearing lately: Engaging. Our social media posts need to be engaging for people to get excited about them, share and interact. Our website copy needs to be "engaging". Currently it has a lot of statistics and data. It explains what the disability issues are and how we see them, but it lacks a sense of urgency and nothing about it grabs you. It's in proper English and perhaps it even has a structure and a flow, but it doesn't really explain why you should care. It doesn't really reassure you that you can trust us with your time and your money, that the issues we talk about matter to more than just us, that we are ready and equipped to deal with them, that we know how, and that it's our own way to change the world in ways that have impact. But the impact is not something we've done a continuously good job showing. I have a disability- so to me FDAAF's mission never needed any clarification and explanation, but I see that's not necessarily how it comes across to others. I don't need reassurance or reignition, because I'm as excited about it today as I was on day one. But  the non profit that I formed is not for my benefit but for everybody else. Them being able to put it together in a way that not only makes sense but gets them excited about the cause. So much to dismay of our already overworked Creative Director, I threw another project to the mix. We were about to launch the fundraiser for the disability App and just move on from it, but instead of just throwing that hard sale out there and letting it fizzle out I thought, why not give it a fighting chance? Why not instead of writing about it, show them. Actually engage the public, give them something they can experience. Then we can let our mission flow from this project to the next with something you can be a part of that hopefully will be fun. This is something we worked out over the weekend, and it amazes me that we never thought about it before. We all wanted some change, something that will drive the narrative. I will not say much more as this is something we are planning for August, but people we spoke about it love it too. Here's my advice to struggling non profits- make your first project out of the gate big. Let it be about all the elements and issues you care about.  Make it something that allows them to physically experience your perspective. That's how you can make a connection.

In a different part of Florida our Creative Director is working on an upcoming website for my law practice, because - well I need one. I have a block of text I need tob write for it that will show that I'm competent, compassionate, experienced and trustworthy. Or as she says it: Engaging.