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.

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.

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?

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.

4th on the 3rd.

You can't make this up! 4th of July is one of the biggest patriotic holidays for Americans in the year. Many make a weekend out of it, go to the beach, spend time with family or have friends over for a barbecue. It wouldn't be much of a break this year as the day itself falls on a Saturday. But with the calendar standing in the way of everyone's vacation plans, the long weekend would be.... well, just a weekend. In an attempt to give hard working millions well deserved time off for many the federal holiday of July the 4th will be observed July the 3rd which is today. My local mass transit system will not be running this Friday for example. And here's the funny thing- as the bus service is available seven days a week, they could have easily shut it off on Saturday and the drivers would still have a day to celebrate.Instead, they will be back to work on the 4th, the actual calendar date of the holiday. I guess since that one didn't work we go just with the one that we like better. So this year the 4th is on the 3rd or the 3rd is actually the fourth and Saturday and Friday trade places if that makes any sense. I remembered a line from some old Russian comedy that went "The week ends this Wednesday" and I'm beginning to understand what they meant. Is it Friday? Is it Saturday, is it both? I guess we'll know Monday. All I know is- with the projects going on I could use a break no matter what day it is and I have sushi in my refrigerator. I might even check out the new Terminator movie this week if my friends feel like leaving their brains at the coat check and enjoying two hours of special effects and explosions. I will enjoy this. Poland is famous for its extended holidays and long weekends. There are years in which all you need to do is take a day or two  off to get what we call the longest weekend of modern Europe. The first week of May and Christmas/New Year's feel like an extended leave. It's time Americans caught a break as well. Have a warm, happy and safe Independence Day!

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.

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. .