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
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
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 .
Monday, February 8, 2016
Over Christmas I've sent about 65 emails. I reached out to fraternities and sororities, to heads of departments at the local university with majors relevant to my nonprofit's needs and mission in order to generate some volunteer interest. And it worked: Today we have about 18 interns between our three core projects, with new inquiries every other day. You won't find people to help you unless you look. You won't get people involved, unless you ask. We were short staffed and unfocused this past semester, and we didn't really do a good job communicating our needs and our vision, and that's our fault. But if we were going to break the pattern, something needed to change. I took communications into my own hands. I've decided that I would give this concept just one more shot before I gave it up. Hey, if something doesn't work it doesn't work, and maybe it wasn't meant to be. But it wouldn't be from the lack of trying.
Tuesday, February 2, 2016
There's a commercial on American TV airing mostly at night encouraging viewers to support a nonprofit dealing with abandoned animals. A worthy cause no doubt. The announcer, an actor I presume reads the copy in a shaky if not crying voice, over images of dogs in cages. The message is simple: give, give, give- and I guess- there's merit to it. All nonprofits need money and they need to stake their case. I must say, as someone who is also in the charity sector- although with a different cause- I don't like that ad. And I reach for the remote as soon as it comes on. I understand the need to make a passionate appeal- and having only thirty seconds to get the pony- but to me that presentation crosses the line. I would have felt differently if one of the founders or volunteers got on camera and made such an emotional presentation spontaneously speaking from the heart. But to me- with the tone and direction intentionally hitting that one note- it felt, well, I dare say it, calculating and emotionally manipulative. And then it kept on, when I think the message has landed. A different ad but for a similar cause uses the song called "In the Arms of the Angel". I have a friend who can't even listen to it as it as it comes on on the radio because it makes him cry. And it really got me thinking- is it what the nonprofit sector is, at least to some people? Making people feel bad? Playing on emotions? If so, we've been approaching this business all wrong. Is it really about making people feel guilty for what they have and for the fact that others have less? Is the message of charity really:"You must give, otherwise you're a heartless human being"? On the other hand it allows some to feel better than others because they have the resources and the ability to share them. With one gesture they raise above it all and get to quiet their guilty conscience. Or worse: they seek validation through charity work. I'm not sure I like that either. That's not the reason why I got into this sector. Maybe I'm naive and perhaps I'll never build a great international institution. But I'm not sure I'd want to. For me a nonprofit's role is not to boost anyone's ego or to tear anyone down for being successful. It's a platform to talk about interesting things in interesting ways. To introduce you to the causes that I care about. For me- it's disability. And I'm tempted to say that I care about making you think more than I care about that check. We do need that check though, but I'd rather it go with a message of how we can do something amazing together.
I started a nonprofit to focus on the positive- not to make people cry. To talk about some project ideas we have to change how people feel about disability, accessibility and mobility. I guess we could show sad and depressed people in wheelchairs crying and abandoned- and we know there are individuals like that. But that's not I wanted to show, not what I wanted to dwell on. I want to build on excitement - on how the world could be, even if we have long way to go. I want to focus on change, on empowerment, on inclusion on empathy. For me Florida Disability Access and Awareness Foundation is a dream and a goal. I'll continue talking about addressing these points with energy and positivity. Perhaps one day you'll join us- visit http://fdaaf.org, see our vision and drop us a note. And I'd like to see more nonprofits talking about how they want to change the world rather than describing it the way it is today. I'd like for all of us to work towards a grand vision that can inspire us all.