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:
Also , shoot FDAAF Gators an email at

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 and let's work together!