Sunday, November 27, 2016

Childhood disability in the public eye.

Full disclosure: "A League of their Own" is one of my favorite movies. Actress and TV personality Rosie O'Donnell has caused quite a stir a few days ago by suggesting that Donald Trump's youngest sun may have autism. She later defended her comments by saying that Barron Trump's high profile would bring attention to the issue. Here's what I don't like about this: he is only ten years old. Nobody should be made the face of anything at such an early age, and no person should ever be "outed" as anything against their will. Even if true- and again- the boy has been thrown into the public eye without having any say in the matter- it will be up to the incoming first couple to reveal any information about him. And even with that- we need to remember that his take on it might be different than his parents, and ten years down the line he might not appreciate the exposure. Here's one thing I will say as someone who grew up with Cerebral Palsy, a pretty visible condition, with very loving parents who were also determined advocates. My mom and dad always identified with my well being and my perspective. But my perspective and theirs was not exactly the same. I know it's very easy to confuse when you are so intertwined with someone it feels like you may be one but you are not. The choices that they made for me were not always my choices, and the consequences they have accepted on my behalf where not always the choices I would have. And this is something that I always think about when saying celebrities featuring their children so willingly and talking about their issues. Disabilities and medical issues are private concerns.

 Few years ago I wrote about how angry I was when a drunk woman pointed at my wheelchair as I was rolling by and said "I know what you have! It's Cerebral Palsy" She followed up with, "It's OK, I'm a doctor". I don't care who she was. She had no business being in my business. Earlier, I've written about my friend who went to great extremes to hide the fact she was bipolar. Because she had the right to control that information. To live her life as she chose to as much as possible. Rosie O'Donnell should understand that as much as anybody. Disabilities are stigmatizing. You don't start a discussion by blowing up somebody else's life, just expose it for anyone to view. You lay the groundwork, you let them come to this decision. Any discussion about Barron Trump should start and end with- he is ten years old. And if the Trump family is really facing any of these issues, maybe it's an area where Mr Trump and Ms. O'Donnell put their differences aside and work together. I know that this is something that people do- my dad would also point out some people on the street when I was growing up with neuromotor symptoms, but I felt it was just so easy to jump to conclusions. And again- none of our concern.  So much is being said about bullying. And yet, it's easy to gang up on a ten year old boy, who may or may not have something none of us is entitled to know about. And he goes against grown people with a platform. Adults who should know better.

Didn't we feel that commenting on Secretary Clinton's alleged Parkinson's, a grown woman, a politician and an issue relevant to her ability to govern was also out of line? If Ms O'Donnell has interest in approaching disability awareness the kinder way, she is always welcome at Florida Disability Access and Awareness Foundation and so is the Trump family. Let's not tear into each other. No problems can be solved that way.

Wednesday, November 23, 2016

FDAAF Gators or how to get students involved

Every grand idea needs a team. Nonprofits are about a mission. A vision. A narrative. A story. The world not as it it is, but as it needs to be. When I started the Florida Disability Access and Awareness Foundation, I've said that while it's about the types of issues I know full well and face every day, it's not really about me alone or any one individual. It's about the shared understanding we developed within our Board of Directors over the last three years and all the volunteers that have since came and left. An understanding that needs to survive on its own, even after I'm no longer involved and can stand on its own merit.  All of us wanted to share our values and hoped our passion would spread like wildfire. We chose to develop media and technology projects to change perceptions and deal with disability prejudice and stereotypes. Nothing is more powerful than visuals, movies and TV shape attitudes and no medium is more interactive than a video game. But to me, what we develop is almost as important as how. I wanted to find a way to harvest the energy of the younger generation for greater good, to get them excited, to get them riled up, but also to give them a creative outlet and to teach them as we move along. Yes, the opportunity to work on real projects that touch upon real issues is very exciting. But I'm more excited about the education experience and spreading disability empathy that comes with it. Because perhaps we don't have to educate society as much and change perceptions later on, if we raise a caring responsive, empathetic youth. Give them the perception they can internalize and take on. I'm very excited that Florida Disability Access and Awareness Foundation has a sister student group at the University of Florida, FDAAF Gators. Our students can work on projects that matter to them, but also volunteer and intern and even be in charge of the projects our nonprofit is developing. It's all pretty new, but I think giving them a structure and one that is in many ways separate from our charity helps meet all our goal. We were very lucky to find a passionate student, Brooke Kaplan who wants to make a difference, and an advisor, Beth Roland who is our campus connection and knows how to talk to and motivate students. For us it is crucial that the club has a direction and positive energy. It's part of our philosophy to get students to do more than just make coffee at a nonprofit, but to actually work on and drive real projects for real change. In that way FDAAF Gators has a chance to be unlike all those groups that people move on from and forget about. I hope to us is the first of many student communities with FDAAF branding. Every school should get one, as we always look to expand our team. But this is our call to other nonprofits. If you're near a school develop a campus presence. Find creative ways to get students involved. It not only legitimizes you, but it opens up so many different avenues for expansion and growth. Seeing this made us proud: https://ufl.collegiatelink.net/organization/fdaafgators.
Also , shoot FDAAF Gators an email at gators@fdaaf.org


If you can donate:

Monday, November 7, 2016

The Clinton Foundation problem

The Clinton Foundation has just made it more difficult for all of us in the non profit sector. For me- the issue is not about politics. It's not about who you plan to vote for, and if you love or detest the Democratic nominee. I also want to save the debate on whether or not it's ethical for any institution to take money from foreign governments that throw gays off buildings and don't allow women to drive for another day, and what kind of expectation is tied to a multi million dollar donation to a charity spearheaded by an influential politician. Those of us in the non profit sector spend many years developing our main asset: reputation and the major currency- public trust. It takes time to convince donors that we use their money wisely, that we're transparent, that we have a goal we're passionate about that they should get behind and believe in and that we are not wasteful. The controversies that surround the Clinton Foundation reinforce some of the worst stereotypes about how big charities run and what they do. From excessive salaries, meetings with US administration and preferential treatment,jets flights and private travel, every week Wikileaks serves us a new batch of foundation related scandal. It's bad enough if those are simply accusations, it's so much worse if any of it it's true. My biggest problem is - that we are all viewed as one industry, although we do different things and often don't even have much to do with one another. The Clinton Foundation soap opera might not be causing much outrage because it reinforces what people often think of non profits already- that although the might not know how and why exactly - something fishy is going on and it's most likely a scam. A bias like that is very difficult to counter. How can I prove to you that I have good intentions?

When I launched my nonprofit, Florida Disability Access and Awareness Foundation I started writing about its mission with excitement on social media. I remember being attacked by strangers on Facebook, saying that it has to be some elaborate scheme to line someone's pocket. My foundation was also accused of using "a picture of a child" to promote it's "shady mission". The picture was me in a wheelchair. I just happen to have a youthful appearance. The person was some sort of a nonprofit vigilante who took upon himself to track and target organizations he didn't think were worthy. These are the types of reactions we have to deal with. and many of those grass roots nonprofits like mine don't have access to Wall Street, investors and bankers. I must say, when I read of a million dollar gift to Bill Clinton or $250,000 speeches I think of the projects I have going on that I can't even get the $600,000 budget for. a project we are now developing All I can do is tell you my story. How I started a nonprofit because I was tired of how society viewed the disability community and I wanted to do something about it. That my goal is to develop media projects and videogames and apps- by people with disabilities, about people with disabilities and for people with disabilities. I also want to teach veterans and other people with struggles how to code and produce, giving them a chance to compete in that industry.

It's a shame- The Clinton Foundation for many years seemed to be the gold standard for non profits and many of my friends devoted a lot of their time and effort to help with the Haiti projects and really believed in it. Every time a controversy like this happens- people believe less. Care less, trust less and want to help less. And so we all suffer. How do we recover? For me it's focusing on the positive. On the passion that I have, on the conviction that I can make a difference. Some of us actually want to do good things. "Change" is more than just a slogan. I can show you what I'm doing and I can tell you why. Cocktail parties with the DC elite couldn't be further from what we are doing. But we rely on every dollar and really appreciate all the help. What I hope for - is that people realize that there are countless nonprofits doing the good work every day. And that yet another scandal won't cut off support for those of us that are not in the spotlight, or are connected to big money in any way. And this is the job we will be doing Wednesday morning, come Clinton or Trump. In the meantime, please visit our website at http://fdaaf.org and let's work together!

Friday, October 7, 2016

On Disability and elections

My Facebook wall continues to be a heated place for debates as Presidential elections are approaching. Many of my friends expect me to strongly come out against Donald Trump, and yet I continuously refuse to do so. Every few days someone posts an article about he or his businesses tried to avoid or supposedly violated the Americans with Disabilities Act. Their take, of course is: that I have a disability nonprofit, that I have a disability myself having spent my entire life in a wheelchair, so my position should be strong and firm. What they don't remember- or perhaps never knew is the reason why I started a non profit in the first place. I took on this mission precisely because it the positions that are attributed to Mr.Trump and his industries are not new and unique to him. They are shared pretty much across the business community. While to me the ADA is something that fuels my empowerment and secures my inclusion, to a business it is not simply an expense, it is a burden. I started the Florida Disability Access and Awareness Foundation to build some form of understanding for the law, what it does and what it's trying to accomplish. Many business owners have shared with me privately, that accommodations are costly, time and room consuming and that they have to do what they feel is right for the bottom line. And I said multiple times, that while on some of those things they could be reported, fined or even sued, I didn't want to be the person who shuts business down or gets them in trouble. Instead, I want to educate them, change how the think, get them to understand what it's like to be somebody like me. That's why I started FDAAF: to show people that the ADA is not some abstract requirement, but something that affects people's lives. Because if we don't see the overall benefit of having those solutions in place, we will always find ways to get around it. To single out Donald Trump would be deeply unfair, even if allegations are true. I've seen dozens of ADA inaccessible places in Gainesville, where I live or looking for a technicality allowing them not to comply. Rather than yelling and threatening owners with legal actions I want to help them to grow and to understand.  You always needs to see issues from both sides, besides - I have always said, just like the establishments around me- I'm part of my community. I live here. If they blossom, we all blossom together. And to have someone come around and gain a better understanding of a reason behind a measure is- I think, more meaningful that having them comply with a requirement.

I have great respect for Mr. Trump's movement and what it represents. If he was ever open to it, I'd discuss ADA issues with him, because regardless of the form FDAAF's programs take, at the core what we do is educate- show the ability in disability and the value of inclusion. I started FDAAF as a 501(c)3 nonprofit to deal away with stereotypes and show people with disability as worthy, regular often accomplished human beings. I didn't feel any other organization properly addressed those issues of perception and I wanted to use technologies and new media for a uniquely modern approach.  I'm more interested in what I'm doing and what I'm trying to build. In all honesty, whoever takes it won't affect us much. We are working on something we can't really announce just yet. And to quote Mr Trump. "It's gonna be big" (We hope). So consider donating to Paypal Donation site and remember: we are a 501(c)3 nonprofit, registered to solicit in Florida CH42912

Sunday, February 28, 2016

Loss

There's not a good way to say this. On Tuesday my father has passed away. The reality of it all is still sinking in. I suspect it will take my a long time to fully process what happened. I did not expect to be hit by this profound sense of loss right away. A feeling in the back of my mind that nothing will ever be the same, that nothing will be OK again. The idea that no matter what I do he will not be there for me anymore is foreign and strange. Although I have not lived in the same country as my parents for the past eleven year, their presence was always felt in everything that I've done. They're the quiet voices of judgment and encouragement in my head. Over the last week I've had emotional spells and times that I felt at peace. There were moments were I forgot about it and then I remembered  again. Times when I felt focused enough to work and when I drifted away during a conversation. Today I feel mostly tired. If it's this difficult on me here in America, I can't even imagine what it's like on my mom and brother. It just doesn't seem real. And then it is all too real. I've written time and time again about the role my  parents had on combating my disability and shaping my independence. I have my dad's beer-coloured eyes and his risque sense of humor. I hope I've made him proud. During this difficult time for me and my family, I hope you can understand that as much I try to get back to the swing of things it will take a while to be a 100%.  Check back this space and don't be afraid to reach out to see how I'm doing

Friday, February 19, 2016

Back to the fold

Earlier this week we welcomed one of our former directors back to our team. There's a certain sense of comforting  familiarity in bringing one of key players into a new role. Someone who knows you and your organization so they know what they're getting into. At the same time - everyone has done a little changing and plenty of growing, so it's a bit like discovering a familiar face all over again. While the nonprofit is in some ways the same, it's in a different place than where it was when it was. And it's exciting for me to see it through the eyes who was there essentially at the beginning. Only then I realize that as hard as I am on myself for not being where I want to yet, we did make a lot of progress. Slowly and steadily we are moving it the right direction. And it makes me feel good to not have to explain every single thing although there's a lot of change. And for someone with that sense of understanding to bring their own excitement and energy levels brings the best in us and it turn gets us going. It's a bit like coming home. And to have someone wanting to come back to a vision you're trying to build tells you that despite the setbacks and confusion, mistakes and often- time passed, but not in vain- you're doing something right. The truth is- we needed help. And there was no one else I would trust with our ideas more than someone who was in the trenches with us. The timing seemed right. Our programs are expanding, we are excited but overwhelmed, everything seems to be growing at a crazy paste. It's good to have a friend there with you. That's the nature of nonprofits. People leave, gain a different perspective and then return, injecting it with new ideas. All we've been doing is planning and we are excited to go forward. Hopefully it's nothing but smooth sailing from this point on. I have the same sense of excitement for the cause that brought us first together. A feeling that sky is the limit. That we must think outside of the box. Our projects our bursting outside of the box. We now have programs and structure we've never had before. And you can only build on that.

Saturday, February 13, 2016

Defiance

There are many points you can take away from the Martin Shrkreli media circus. You can talk about ethics and business and human nature. How after decades, centuries even of being conditioned that success should be the ultimate goal - and that being inventive and prosperous is a good thing- we are suddenly talking about drawing a line. How we are seeing that all of the sudden, some industries are different than others, although all businesses take time, money and involve risks to develop. We could discuss who should make those calls, where those lines are and if putting in some hard regulations can have a chilling effect on an entire industry. And how on the other end preventing people from identifying and jumping on an opportunity can shut down not only the stream of fresh capital, but also ideas and energy into it. Here's what I do know: most of us want to do business, succeed and prosper, but also feel good about ourselves and what we do at the end of the day. What's fascinating to me about Martin Shkreli- as I try not to have an opinion about the man himself or what he does as I never met him nor am I his priest- is how little he seems to care about what people think of him. So here's the big question: Is the media interest in him fueled by the fact that he has done something so outrageous that there's no return from it, or is it that he refuses to play by the rules? He draws attention to himself of course and he doesn't help his case by being defiant. He's dismissive, he's making faces.

 But is the reason for his overnight celebrity status the actual, underlying controversy or how he goes about it. Has business men never done worse? Have we just not heard about it? Or do we really want to start looking under the hood of every business in America? Because then I think we should brace ourselves for what we might find and that won't be pretty. The thing about Martin Shkreli is that he hasn't launched his big media apology tour, and I don't think he will anytime soon. He hasn't cried on Oprah's couch yet or danced with Ellen, nor told us a moving tale from his childhood. He hasn't planted a tree, shook hands with Al Sharpton, nor no A-list celebrity came out to say that at his core, he's a great guy. There's no scholarship in his name. And I think the most important aspect of this story is the media portrayal of him rather than what he has actually done. And how refuses to follow a well established path to redemption. Because everybody does it. And note, we never know what the content of their character is, if they are ever sincere, but we do expect that they keep up appearances and they make appearances, because at the very least we want them to at least act like they care. To appease the media, that will then put their stamp of approval. The thing about Shkreli that pops up to me transcends the ideas of good or bad. He's defiant. He chooses to go overboard to make a point. I think he might be making a mistake, because he will need those people as he makes his way up again. But he's story really made me think- that if he wanted to- he could have cut the prices of his drug in half the day after, and although it still would have been prohibitively more expensive then three days before, he would have still been introduced as a great humanitarian.

 And I don't think any of the outrage would have actually happened had he been quieter, more responsive and respectful. Even if all the substantial facts were still the same. So then, I thought the controversy is not really about his actions, the actual pricing story or the SEC controversy, but his defiance. I really believe that but for his defiance, not of this circus would happen. He might be an awful person, I don't know and I don't care- but I don't think it's the reason for the interest in him. It's that refuses to play along and exposes something about the 24 hour news cycle.

And if he wants to, he can donate to my nonprofit, Florida Disability Access and Awareness Foundation  (http://fdaaf.org) and I'll shake hands with him. But I don't think he will .