Monday, March 9, 2020

How do I keep safe?

The Coronavirus instructions are straight forward. Wash your hands frequently, don't touch your face. If you have to touch your face, wash your hands first. Easy enough, right? But what if like me you're in a wheelchair? I use gloves when I go outside, so that's not a problem. But if the virus survives on surfaces, it can be om my gloves, I can transfer it to and from my hand-rims. If I take off my gloves, wash my hands and touch my wheel in any way to move around it's on my hands again. Seems like I'm at a bigger risk for transmission, because the contact between the outside world and the ground is more direct and continuous. Perhaps I should wipe my wheels with Clorox every time I come back from outside. People who walk can put their hands in pockets. I use my hands for movement all the time. Seems that to keep safe I would need to keep an outdoor chair and an indoor chair and yet a risk of cross contamination exist. Having gloves has through the years been actually pretty effective in getting me to not touch my nose and face.

The bigger issue is what happens when I get home, when the gloves come off, when I'm making food. My risk is not so much from direct exposure like for most people. And yes I've been to a play Saturday and I noticed the mist of saliva as actors were articulating and singing, and it did disturb me, to the extent I couldn't really enjoy myself. This is not a big issue for Florida today, but in a week, a month, three months it might be. All these behaviors can become deemed to much of a risk to take one day. And I did say to myself, I hope the actress doesn't sing in my direction, that she turns away, go more towards the back of the stage.

 My areas of exposure are however different from other people. It might not be the Court, the cinema or the theater. It's the grabbar I use to pull myself. It's the doorknob, it's my wheels touching the ground.  I can't just go wash my hands. I need to keep on wheeling. Touching the wheels every second.  Just yesterday I was pulling myself up the ramp grabbing onto a railing a frail older lady was holding on for support with her bare hands. Perhaps gloves with some antiviral properties are the way of the future, but till then I've been trying to limit being outside. Crowds or no crowds. Because for me, for those like me who use their hands as you use your feet and who are not stuck at home the risk can come with every turn of the wheel.

Sunday, August 12, 2018

Blind rage

I've gotten more and more experienced in the delicate art of the legal profession over the last year or two. I do enjoy an occasional vocal sparring if you will in front of a judge. Thinking on your feet, figuring out a good comeback, using the power and persuasion more so than trading jabs, which also has happened on occasion. What's more important- when I'm in that zone we are equals and I can keep up with anyone. Underestimate me at your own peril. Yet, last night, a situation all too familiar and all too frequent, happened again. A college kid with a baseball cap on, coming from the same apartment complex I live in asked me if I needed any money. I guess in his mind he was doing a good thing, but I worked myself into a range. My voice was shaky, I couldn't really get the words out, I remember saying something about being a lawyer, there were so many good comebacks I could  have said but didn't. I felt really offended and shaken. A horrible feeling took over my body like I was stricken by something. What is it about me that made him think I was homeless? I was coming from my apartment after taking a bath to throw out one of the boxes that amazon continues to bring but never seems to take back.  What is it about me that made me react the way that I did, why did I let it control me, where did all my wit go at that instant moment. I guess it's because what he was really communicating is that he was better than me. And giving me money would have made him feel better about himself. It's not a new situation. It has happened before. And it still hurts. Because no matter what I accomplish and how far I go there will be people who will think that when they see me in my wheelchair. And there's little I can do do change what people think and feel. And pity to me is the worst emotion you can express to another human being.  Whenever I catch myself thinking, why do I devote so much time to Florida Disability Access and Awareness Foundation and is it really needed, I remind myself, this is why. I need to be the change I want to affect, so I don't have to be angry at the world anymore.

Tuesday, November 28, 2017

UBER disappointment

Imagine the frustration on my associate's face when she tried to get me a wheelchair accessible Lyft. After all, there's a dedicated section to riders with special needs and everything. Shouldn't be a problem, right?  It's Las Vegas. Can't imagine more visitor friendly, tourism driven place. Wrong. It ended up being a list of taxi companies I can call to come and get me. After all these years of being on my own I got used to the set truth that my transportation options are limited. I also- instead of complaining left and right try to relish whatever little I can do by myself. It's always interesting to see someone else, who never had to deal with something like this, learn what it must have been for me, as they try to find a solution. And for a minute or two we are in the same boat. Surely Uber must have something, right? Here's a funny story. I was trying to get a front desk receptionist at an extended stay establishment at which I was checked in for sixteen days to get me a cab in the morning. Apparently they don't do that, why would life be so simple, but her colleague remembered there was a wheelchair option in his Uber app. I installed it, and by golly, he was right- There was a choice called Uber WAV and it cost $0.00! I quickly assumed this was something that connects you with the local paratransit service using Uber's infrastructure or even some pilot service launched using governmental grants. But at least in Las Vegas, arguably the most touristy place in the world, that wasn't the case. I chose my destination, I chose my ride (WAV) and the price and all it gave me again was a list of taxi companies to call. No data I've put in or selected was given to a taxi company in any way. I call, I describe my location (instead of sharing my GPS) and then I call again to see where the cab is, is it on it's way, does he know where to find me. The retro aspect of it all would have been funny if the situation wasn't as tragic. None of the things which make Uber so attractive were available to me: price, convenience, ability to figure out arrival time, tracking your ride, paying and tipping via app. Instead I was teleported back to the 80's.

I understand that individuals with disabilities are not a huge segment of Uber's client base (although if they ever tried it they might be surprised with the response, but with their revenue I would assume they can come up with something more modern and evolved. Perhaps, if they have to reroute me to a taxi company, they can still offer them a system that puts in the order for me, gives me a price and a time estimate. Who in the XXI century calls to order  a ride? Why isn't there an app that taps into the data of Uber, Lyft, Curb and whoever else to give riders with wheelchair choices and complex solutions.

To Lyft's credit, they're not even pretending they're doing something for people with disabilities. Another interesting encounter I had was with an app called Curb. You can pay for your taxi ride with it and even order one to come get you. A lot of cabs in Vegas seem to be on that system and it seems to pull information from across multiple companies. Very convenient, so now I have it on my phone. There seems to be a lot of handivan taxis in the city. Yet, when it came to ordering one, the only option again was calling the dispatcher. Not booking via app, not tweeting, calling... All this technology, why can't we use it to help people with disabilities. Why can't it make life easier?

And it reminds me why I started the Florida Disability Access and Awareness Foundation to do precisely that- promote accessibility and inclusion using media, software and technology. Perhaps one day I can sit down with the good folks from Uber, Lyft and Curb to see how we can leverage all that to make people with disabilities more mobile.  Until then, it will be easier for me to order food than get a ride.

Sunday, March 19, 2017

A year in my life.

So many things happened over the past twelve  months. Hugs and compassionate words came and went and life somehow  moved on. February marked the first anniversary of my father's death. Professionally, I've never been busier. As a lawyer, I was thrown into high stakes litigation. I do trials in places like Connecticut and  Las Vegas. You guessed it. I'll be flying out again next week. This isn't something I've planned for myself, but it is what I ended up and like doing. Planes, airports and connections are somewhat a routine now, and I don't mind it as much as I used to. Who knew that when you step away from the safety of your computer  there's a whole world of challenges waiting. Life is strange. Hours after I've learnt of my dad's passing, I've landed my first continuous client. And met a fellow attorney I'd end up having a lot of these crazy adventures with. I remember asking him to give me until the end of the week to get myself together. The work kept me motivated, focused and organized but also allowed me for something I've strove for all these years- financial independence. I never ended up working at somebody's law firm, I think my physical condition would be too much of an obstacle to many of them- and I never claimed to be that amazing anyway- but I feel valued for my skill or knowledge. Doing things for myself lets me find my own groove. I never thought I'd enjoy Court appearances as much as I do. And although I get stressed before I get there, all that goes away when I enter the room.  I'm not there yet, but I'm  on my way.

On the nonprofit front: Have you seen our Foundation's new website?  We've decided to create the world's first video game where the main character is in a wheelchair. We have a dedicated team of professionals, interns an volunteers. Our concept allows players to experience the disability perspective in the context of a spectrum of social issues that people in his life face. The creative juices really are flowing. It's amazing to see how people who believe in this idea can really build something from nothing.  It's been my life philosophy that everybody has something they deal with in their life, and this is a good way to channel that thought. I also want to use this project as a template that would allows us to train people with disabilities and veterans giving them skills to succeed developing software projects. To me, a game is a mean and not a goal. Undoubtedly, there are greater things coming. Now, I will not say that there are no days when I'm not sad, melancholic, lack energy and motivation, or feel lost. But I am getting on. The one casualty of this was my blog and Linked In posting. I don't find as much use of it as I used to. Truthfully, three other things need my attention more as I think of writing something. Dear internet: I do think I'm doing well. I only wish my dad was around to see what's becoming of me.

Tuesday, January 10, 2017


I rarely talk about what brought me to America, because it's not something I like to dwell on. Living in a country where I felt so limited, by my physicality, by everything that surrounded me it seemed like nothing really brought me joy. The days kind of blended together. There was no future that I could imagine for myself, nothing I had to look forward to. There was no purpose, no grand idea. I would always be there, in that nation of stairs and I was lucky that I could get out of the house. And I thought I should be grateful that I had this much. It wasn't anybody's fault. And I had a family who loved me. So I felt extremely selfish for feeling this way. But I was profoundly unhappy. And I just couldn't get myself to be any different. Sure, you reason with yourself, and you think, there's a lot of people who are much worse off than you are. And you have your support system here. Count your blessing. This is what you know, but on some level you think, maybe there's a different life you deserve. Not that anybody really deserves anything, but you owe yourself an effort to try something different. This to me is what hopelessness was like. I wasn't simply depressed- although no doubt I may have been in addition. I felt stuck in reality that I didn't create for myself, that was not only unwelcoming, it didn't really allow me to participate. Because what your able to do and how you interact with your surroundings can change your entire outlook and I felt useless. It's extremely personal and deeply intimate. It's how I felt about me. So I moved to America, got all those law degrees and my green card- and the rest you pretty much know. I didn't want to feel like that ever again, so I didn't something about it. It wasn't fast, it wasn't easy or cheap. And I don't think I'm some type of an inspiring folk hero as a result of it- I know it was hard on my family, but it was something I needed to try.

 So when Michelle Obama said after the election of Donald Trump, "This is what having no hope feels like" in her Oprah interview I was really surprised. Hopelessness is not the same as being sad or disappointed or angry. It's dark and cold and unapologetically final. It's how you feel when nothing will ever be OK again and there is nothing to look forward to. What do you have if you don't have hope? I understand that we live in times when people love to make grand gestures and overblown statements. It's a generation that uses "literally" to mean "figuratively" and it's literally in the dictionary. The dramatic sense of finality. I come from a nation where countless generations gave their lives for freedom in wars and uprisings. Because they didn't have freedom but they always had hope. I feel as if the sense of perspective was completely lost during this presidential elections. Big words have lost their meaning. The bigger the better.

 Regardless of your politics, I think everyone should take a step back. This isn't hopelessness and you don't always get your way in life. Get used to it. To my liberal friends I say this: I reject the idea that any politician can give you hope. Obama didn't give it, Trump isn't taking it away. Hope is something that comes from within you and from your own life - not a perfect stranger on TV. I've been concerned about Ms Obama for a while now. Over the years I've seen her looking stressed and tired with a joyless expression on her face. In 2008, she said she was never proud of her country before. I always thought that was strange. In all of her adult life she never was happy to be where she was? That's a lot of years and that's a lot of moments. Not a single moment of pride to reflect on? It did cross my mind multiple times, that maybe she is battling with depression.

Because I for one love this country. And I chose it for myself. Obama, Trump or Clinton - whoever it is doesn't make a difference about how I feel. Because it's my choice and it's about my life and where I wanna be. I'm not like the people who say that if you don't like it here you should move. I do think however, that if you're that unhappy to live in America - if you have the resources to do so- try to find a place where you can be happy again. If being here makes you miserable- go out there and explore. You really don't do anybody any favors by forcing yourself to be somewhere you don't like. There 's no virtue in your sacrifice and you really owe it to yourself to be happy. When I say consider moving, I'm not saying it to be mean- I'm saying I did. And it was probably harder for me than most other people. But also I must say I'm disappointed with her- as someone who arrived on message of "hope change and faith" at the very least I expected her to be the unifying, calming presence.

Tuesday, December 27, 2016

Accessible Vegas

My law practice has been taking me to Las Vegas of all places over the last few months. With two cases, one in federal and one in state Nevada Courts I have to physically appear before a judge from time to time. The trips are usually as short as reasonably possible. We arrive, stay at a hotel, do what we came to do and leave soon after. My co-counsel rents a car at the airport and usually takes us to our destination. While I do have cousins in Vegas I usually don't get them involved. I'm there to do work, not to have fun or spend time with family and I need to keep it professional. Also, this is the time I'm paid to devote to a case. Our interaction with the actual city is kept to a minimum. What I didn't know- is how Las Vegas - known for being tourist orientated- prides itself on being disability friendly. If this is widely advertised I have certainly missed the memo - and visitors in wheelchairs like myself should be certainly made aware that they can easily get around by grabbing a cab off the street. Granted, I never had to get one before, so I never considered it as a form of transportation, so perhaps this is not a new thing- but considered me impressed. There's a first time for everything, right? Here's what happened: As my co-counsel and I were arriving from different parts of Florida, her flight was three hours+ later than mine. What we haven't caught in time was, that as we used different airlines, we'd fly into different terminals as well. Although she asked me to wait for her in the passenger pick up area, we did not expect that getting the car from the agency would take another two hours as well. The heavy luggage on my lap made me slow and pretty immobile, so I was just focused on getting to the place where she could find me. I was cold, as the temperature was below freezing, but determined - as she was texting me updates. Then she told me it would take even longer and I should consider taking a taxi. How would I do that, I thought, I wouldn't even know where to start finding accessible transport. I can't easily move back with that extremely heavy bag on my lap. At first I thought, I'd soldier on. I wasn't comfortable, but I felt I should just wait. I considered every move against how much of a bother it would be. One of the wheelchair pushers saw me on his way back and asked me if I needed anything. I told him I needed a taxi. No problem, he said. Turns out wheelchair accessible taxis drive around town like regular cabs, he just needed to flag one down for me. Two minutes later I was getting loaded up. It had a ramp and a bit of a pit in the back so I was seated at an angle. And it was all that he needed to do. No ordering of a service or calling anyone in advance. No bother. The staff at Tropicana, which is one of the older casinos was also very professional. They helped me out of the cab and to my room with my bag. Everyone made me feel at ease. I worried for nothing- and when you have to have to sit around, thinking about what it's gonna be like it can ruin the entire experience. Now I know I have options. And it makes me feel empowered. It makes sense. Vegas main industry is gambling and tourism. It's about making people come, explore, stay and return. And part of that mission is making people with disabilities welcome as well.

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.