Monday, March 30, 2015

Low Priority

Imagine this as an illustration: When I started my second American law degree program in the Fall of 2007, my school decided I needed to register with the Disability law school on the main campus. Until then the administration has been figuring out my accommodation requests on its own and the previous Dean of Students believed that my condition was so visible and obvious he didn't need a piece of paper to back it up. The one who replaced him had a different view- and I didn't really mind if it helps to drive up the disability statistics to give them the resources that they need. The fact is that the law school is a bit further away and the students don't interact with the undergrads or the main campus too much. I must confess I only knew a few of the key buildings that I frequented often. The campus was big, I didn't then- and I still don't now- know where everything was. And a lot of times all you get is a name of a building like it's supposed to mean something. I remember being shocked when I finally figured out where I needed to go. You'd think it'd be somewhere more prominent like the International Center was or the place we got our ID's or close to the bookstore. But it was a bit further off and away and I remember I had to make a day of it. It was near a busy street, nowhere close to buildings that I was familiar with and I remember crossing ir, getting up on that sidewalk and figuring out where to enter was a challenge. The path was steep to say the list and as I was rolling uphill I was trying to figure out where to go. I remember the offices being in the back of a dorm, that I  had to get around the entire building to get to. I didn't think much of it then as I didn't want to be late- and I had no reason to go back there again- but it was striking how hidden and away from the public view the disability offices were. I guess I thought it was a temporary solution for some construction - or that they expanded and needed a bigger space, but for all I know they're still there- in the basement of a dorm, all the way in the back, you'll miss it if you don't know what you're looking for. At it seems symbolic and literal all at once about how strongly the administration sees disability issues as a priority. Hardly visible, far away from the main action - in the basement. When I first moved to America and started school nobody approached me to see if I needed anything like figuring the  city out and finding an apartment. Naive as I was at the time I figured it must mean that the city is so wheelchair accessible I must be able to do all those things by myself and if I'm lost- just like with any able-body person, it's on me. Everyone is independent here, I thought, I need to step up my game. "America has outgrown disability, now it's up to you"- I thought. And in many ways I'm happy I had that attitude the first year, because it did push me to do all those things, often barely, to the best of my abilities. Now I just feel that everybody just assumed I could do everything as soon as I got there, because they were never really exposed to disability issues. They don't know what it's like, they don't understand the struggle, because the never needed to. A friend with a disability recently said, "They don't care about us, we're like a shameful secret". And at that moment I thought of that basement office on the back of that dorm. For the record, and speaking of dorms and apartments- the University did offer me a place in the dorm- a few weeks after I signed a lease and moved in with a roommate that i vowed not to abandon- into a not very wheelchair friendly apartment. But that's a story for another day....

Thursday, March 26, 2015

That fear in their eyes.

A few days ago I met with a man who like me has a neuromuscular disability and uses a wheelchair. But instead of feeling energized and liberated that I found and ally in my struggle for inclusion, the situation left me rather sad and disenchanted. He's about twenty years older than I am, but despite him growing up in a different time you could draw parallels between our lives. Some of the things we experience, some of the issues that shocked us and made us reevaluate how we see our disabilities and our lives and how pushed to the limit we were set on a path of advocacy we would never think to choose to pick for ourselves were essentially the same. We're a generation apart. If I'm still struggling with some of the problems  he was decades ago, maybe some things never change. Who am I thinking that I can come in with my enthusiasm and energy and make a dent? Maybe it's a battle we already lost. While not to say that he was in any way resigned- he is one of these people constantly on the forefront of disability issues, in your face and not backing down, I found it troubling how accepted that this is what his mission in life would be from that point not, and as unfair as it may be this how how people see him, feel and react to him when he's in the room. Almost as if he was invisible as a person and all that everyone else notices is the equipment, the chair, the gadgets, that are external to him. This is the way he sees his struggle- although he's  not backing away from a fight he accepted the framework, the narrative, the box that he's in. I want to throw out the box, kick in the door and the window for as long as I have the energy to do so. But one thing he did say left me speechless and nodding. When I told him of that look that I get sometimes when I'm at a bar or club and people pass me by. "I know it well"- he said. "It's fear". The fear not of me, who I am or what I do. But a fear of ever becoming "like me". Whatever it means to them. This is an emotion and a reaction that I truly don't know what to do with. When they look at me they don't see "me", but a projection of whatever it is that they associate with "being in a wheelchair". It has nothing to do with how I see myself or what I value and enjoy about my life. They can associate any number of negative stereotypes, feelings, ideas with me as they see me, but it's them not me. I would even think that contempt or a strong dislike would have been a better emotion than fear. Because it's something completely beyond my control, and it's not simply an issue of changing someone's mind through education. That day I went home thinking: "Have I been wrong about assessing the "perception problem" all this time? Fear is a much more powerful trigger than ignorance. Ignorance I can deal with. You combat it with knowledge. Fear you just can't compete with. And then perhaps it just goes from there. You simply don't want to think about the things that scare you, so you choose not to think at all. And it's odd to think, that for someone who has never met me or spoke to me, I'm his boogeyman. It's two days later and I still don't have a good answer.

Monday, March 23, 2015

Wheelchair emergencies and time management.

I had a meeting with a colleague today that also is in a wheelchair. I knew I couldn't be late, so I gave myself about three hours to get ready and get there. The bus takes me there in about 15 minutes, but I didn't want to risk it. If I don't plan for enough time, one little thing could make it all fall apart. My feet might get stiff and tense while I'm putting on my shoes or my body just won't cooperate as I struggle to button up my shirt. This is what happens when I rush things. This is what happens when I stress. A tiny last minute thing can throw everything off the balance. As it happens, everything went according to plan and the bus was there on time. Today I wasn't late, I arrived well before the agreed time- but he was. I waited ten, twenty minutes and he wasn't there. But I decided to treat him exactly like I would have wanted to be treated in an emergency. I remember all those times when a bus that broke down, a last minute trip to the bathroom when you're trying to get out of there as soon as you can but that only makes things worse, waiting a minute longer waiting for the rain to stop, or simply my muscles giving in as I rolled down the street made me late for class or a meeting. And I remembered how I felt when all those people didn't understand what it was like and just would assume the worst about me. I knew what it was like, because I was there. It's usually me. To me, just getting up in the morning and where I needed to go every day and being on time most of the time was pretty impressive given my limited mobility. I felt really proud of myself, thinking look at me and how I'm making it. Others of course didn't share that view. But then they didn't really get my limitations either or how little independent I was when I first moved to America. All everybody remembered was those instances as rare as they may have been that I was slightly late. I'd like to be able to say that I have a better handle of my time management, but this comes mostly from giving myself a ridiculously big time margin. Ten years ago I would simply not accept that physical things take me much longer , that I'm not that fast and that there's many things I can't predict. Like three buses in a row with a "full bus" sign, a wheelchair lift that won't come out, slipping and falling on the floor in the public restroom and dealing with the aftermath;  Injuring yourself in the oddest of ways (once, when I was transferring myself back, my chair moved away and I ended up falling back onto the wall, hitting my head and denting drywall. If you go to the men's room at Gainesville's Gelato Company and you notice a small patched hole, that's me, Summer of 2009) I thought briefly about calling him just in case he had forgotten or made other plans, but then I remembered how annoying it gets when people do that to me. I only have two hands. I can either wheel with all my might or I can stop to answer calls or text messages. Sometimes it's enough to hear the "incoming" sound to know what this is about. Yes, I can take a break, but this will not make things any faster and only will stress me out. Ultimately, if I'm on the way, if I'm right behind the corner, I'll see you when I'll see you. There's no benefit in me slowing down  just so we can talk about it especially if I'm trying to maintain a certain paste. Yes, I know what it's like and my next thought was maybe something  has happened. Sure enough, I didn't even wait thirty minutes and he showed up. Some type of a last minute restroom emergency, but he really didn't have to explain because I know these too well

Friday, March 20, 2015

FDAAF: Reaching out to communities

I established my nonprofit on the principles of education, empathy and inclusion. We all have a sense of belonging, and many of us often feel isolated, like there's something that prevents us from connecting. It's my goal to at least try to make disability not one of the reasons people feel that way. Wherever they are and wherever we go, our message is one and the same at its core:   We identify as many things. All of them together make us who we are. We’re never simply this label or the other. As human beings, we’re diverse individuals with complex life stories. And we are all unique. A community gives us a sense of belonging. Finding others who share some of our struggles makes life easier. But what if you find that your community, the people that should be there for you to turn to and rely on can’t really relate to you that well? You may feel misunderstood and rejected. FDAAF recognizes that disability doesn’t define who we are. That we all function the real world where we have lives and families and friends and jobs and hobbies. That we express ourselves in ways that has nothing to do with our intellectual challenges or physical limitations. But- functioning in all of those other groups while you have a disability often creates a unique set of issues very few people can relate to. Let’s be frank. Many people don’t think about certain things, what it must be like for others unless suddenly they have to or they face the issue themselves. One of the principles FDAAF was founded on is to make them think. And to contemplate areas of life that are often not fun or pleasant. To challenge what people know and how they feel about disabilities. To achieve that goal FDAAF reaches out to communities you may not traditionally associate with disabilities.

Not only to make facilities more accessible, although that is always the first step, but to point and say:” Did you ever stop and think that people with disabilities are part of your group? That they are just like you, that they have passions and goals and interests? They have just this one additional thing. Like a wheelchair or a cane or balance issues”. FDAAF chose the LGBT community as its first focus, because while it claims to promote tolerance and acceptance, many of our gay friends and supporters reported feeling like outcasts in LGBT establishments. Being a minority makes it much harder. The uncomfortable looks, the stares, the whispers made them feel anything but included. When you go out you often want to dance and have a good time, particularly in a culture that often glorifies youth and physical fitness. A wheelchair is none of those things. Seeing it takes you out of that zone and sometimes forces you to think about things you don’t want to think about. It may take you to a dark place (through thoughts and ideas that you yourself may associate with disability, not because individuals with disabilities see it that way).  And although it’s more visible in communities that seem act like they are a hermetic bubble functioning in a vacuum, make no mistake. Acceptance is not a “straight” thing or a “gay” thing. It’s a human thing. And we will continue to design campaigns, reach out to partners, generate publicity to help people with disabilities feel more included. Whoever and wherever in Florida they are.

You can read about our programs and the way you can help, here: http://fdaaf.org/projects/

Monday, March 16, 2015

Candor

"Your honesty is refreshing"- someone commented on one of my Linked In  blog posts. I've been sharing my experiences, struggles and successes starting up and running our nonprofit. Some of the things are what nobody told me and I wish I had known. Me and my Board have been mostly figuring out much of it as we go. It often helps to read what others have been through, what they've learnt and how they overcome obstacles. But here's a bit of harsh truth. Running a small nonprofit I can't afford not to be honest. I don't have a lot of money, I don't have access to great resources, a Rolodex full of supporters. We don't have a particularly long history or a lengthy list of accomplishments. Transparency (and ideas) is one of the few assets we do have. We can say, we haven't been around long, but we have passion, dedication and we want to do something good. Here, come read about our plans! One thing I could ever afford is there being any doubt as to who we are, what it is that we're trying to do and why. I may not be part of an organization that has decades of established history like,  say the Red Cross. But you can ask me anything. And we will show you anything. Hopefully, once you see why we do what we do you'll be more likely to help us. I really see no benefit in pretending to be a big and powerful institution that operate  multi million dollar projects if you can easily inspect our financial information anyway. I wish we would be and hopefully - one day it will. But that day is not today.

 For now at least our nonprofit is the combined vision of the few who run it. You can reach out and touch us, you can read all about us. And we struggle. We struggle with volunteers who often do not stay on. We struggle with financing our programs. We struggle with building a supporter base and getting the right kind of message out. So, at least for the time being those are the things that I talk about- and I don't think there's anything wrong with bringing the same type of issues any growing organization faces to light. I think giving the proper context to anyone interested in reading about you is crucial- and as the foundation doesn't have a long history itself, we have to provide it, by showing who we are and where we are in   our development cycle. I have to say, I'm also proud of us, what we do and what we're trying to accomplish, even as things don't often go as fast as we hope and we face all source of problems. I don't think I say that enough. I'm proud  to be on our team. I don't think talking about our troubles is a sign of weakness, if anything it helps you understand us better. I also believe that if you're going to ask someone for money, to essentially trust you, your mission and  your vision- you better give them any type of information they could possibly ask for. I don't think knowing all there is to know about you, having a structure and a plan that can withstand any scrutiny isn't really too much to ask. It's a fair trade off, that allows nonprofits to do what they were founded for in exchange for them simply having nothing to hide. Why would it be such a strange thing?

Friday, March 13, 2015

Push hard

A few weeks ago I found a message in my inbox that started with :"We are composing a section of Adults with CP from various fields to show parents that a CP diagnosis doesn't limit  possibilities for their child. ". It was for some sort of American Cerebral Palsy toolkit and I was asked to share a few paragraphs about myself. The goal was to share a wide spectrum of individuals with the conditions that often are extremely successful in demanding, high end careers. If there's anything I can do besides law it's talking about myself so I agreed. I was asked to keep an upbeat, inspirational tone. Since it doesn't seem my laptop can recover from its Windows 8.1 update last night that causes it to freeze two minutes after the bootr anytime soon, I'll share the write up here. The message I wanted to get across was "get involved" as a parent and "push hard":

 When I was born, I was so tiny and fragile, the doctors told my parents to prepare for the worst. The first 24 hours were supposed to be telling- then 48, then 72. My parents put together my baptism in a hurry, an unusual feat in then communist Poland. 35 years later, I'm still here. And I wish I could tell my mom and dad from back then that their years of hard work and dedication paid off. They'd be thrilled to see my life today and I know it would have given them some comfort. Who would have guessed, that having been born behind the iron curtain, I'll end up moving to America to build up on my existing legal career to get licensed in two states and start up a Florida non profit to help people with disabilities. My parents never quit on me, but always worried. Mostly about what life will be like for me and can they make it and make me better. It started when the doctors first ignored the signs from what they felt like was a panicked mother. I was slowly missing the milestones of child development, leading to the diagnosis of CP at the age of one. My mom then quit her job and for the next fourteen years between the hospitals and the rehabilitation centers exercised me for many hours every day. Thanks  to her persistence, I was spared "special schooling" and "individual teaching program". She wanted me up there, in class with other, fully functioning kids and knew I'd excel. My parents carried me to school every day to offer me the regular, most "normal" school experience, up the stairs as most Polish facilities at the time didn't have elevators and people with disabilities were not welcome at all. And I proved to be better than most of my classmates. From a regular elementary school to a more competitive math-physics profiled high school class, I proved to be a really good student. At the same time, we tried every CP rehabilitation  method my mom could get her hands on. From Bobbath to Peto- I've spent four years in Hungary and credit most of my ability and  independence to Conductive Education. Once Summer, my mother has flown to Philadelphia to get herself educated and certified in the Doman principle. Our living room looked like a gym- with an exercise mattress  and a stationary bike, with grab bars in the living room. My parents pushed me hard and never gave up on me. That drive and motivation became a part of who and how I am as well. In 98 I was accepted to Warsaw University Law. Managed to maintain my scholarship through most of it and graduated summa cum laude. But the outside world of the now capitalist Poland wasn't much more welcoming and I wanted to try and see if I can live differently. I came to America for one year and one program. Two programs and 10 years later I'm a practicing attorney. "Never, never quit"- my life's philosophy became the title of my 2013 book published in London, supporting  a local CP charity. I now practice law in Florida and DC and run a local charity called Florida Disability Access and Awareness Foundation, that pushes for more accessibility. Also in 2013, I was asked to deliver keynotes at a CE World Congress in Munich. I live in Gainesville where I was named one of the city's 18 most interesting people in 2010

Tuesday, March 10, 2015

A wheelchair, a wedding and a hotel from hell

"You can move the chairs around ",  said a man at the front desk as we were checking into a hotel in Fort Lauderdale. I figured it was strange that somebody would tell me that I can rearrange the furniture in my own room, but as soon as opened the door I understood what he meant. The space was tiny. You could barely get through to the other side in a wheelchair. With the beds on one side and the table and TV stand on the other it was a tight squeeze. I was surprised how bad the experience was. Yes, it was Days Inn and not the Marriott, but I've been staying with them many times all over the country. It was not luxurious of course, but I was always comfortable. I always felt it was a brand I knew and could trust, affordable yet of a standard that I recognized and because of that familiarity I often went with them over an unknown hotel where I didn't know to expect. The room wasn't wheelchair accessible of course, but I'm usually fine with regular units. With this one I was glad that I brought a friend along- otherwise it would have been extremely difficult for me. It's almost as if somebody took a low class roadside motel, slapped some corporate colors on the wall and decided to call it Days Inn. Starting with the bathroom-  The sink was actually in the common area outside, next to the microwave and the very dirty fridge, because it was so small that I had to move my legs far to the side while sitting on the toilet just to close the door. It wasn't really worth the money I was paying, but they were sold out either way. My friend chose a weird week to get married. With the "snow bird" season, rates going as much as double what they usually are, Spring break ending, the Gay Pride and whatever else was seasonally happening there in March, if I didn't want to pay 300-500 dollars a night for something slightly better, this would have had to do. The hotel was loud. The floor path was so narrow, that getting by the housekeeping carts that were always standing in front of the rooms was extremely tricky without falling off.  See, that's the thing- all those disability access issues sneak up on me on my day off, if I'm resting, having fun or going to one of my best friends' wedding. It's not something I can stop thinking about at any time, because it is my life, not my job.

The front desk and the breakfast diner was in a completely different building. There was also some confusion about the breakfast itself. When I booked the room one of the confirmation pages said that continental breakfast might be included. When we got there we heard that if we got it after the 28th, then it wasn't. That it's 10.99 a person and it's cash only. Lovely. At least one thing they did have was an ATM, but they don't get  any brownie points from me for that. And the hotel was right next to the train tracks. Can you guess how many times we've heard a train in one night? Fort Lauderdale is a big city, and we didn't really know were anything was. I knew it was one of those places where it may take two hours to get from one side to the the next. The hotel's name had "Ft Lauderdale" in it, but it could have just as easily been one of the smaller towns. The big issue on my mind was how far it was from where we needed to be for the wedding. A friend of mine who misheard the name of the place  where we were staying on the phone  told me while we were driving up there, that we were nowhere near it. And I thought to myself: What did I get us into now. But as it turned out we were only 15 minutes away from the wedding. Yet, we still managed to arrive 15 minutes late. The ceremony was at a nature center, because my good friend, the bride is all about nature. Unfortunately, as you know nature and wheelchairs don't mix. There was no path to the grass area where the sitting area was set up so I had to watch from the sidewalk behind. And we were late, so it didn't make sense to even try to get somebody to drag me there. Our friend was surprised that there wasn't a concrete walkway for the little bit of a grass, we could have made it work. Somebody could have just brought out some plywood she said. They could have, but the didn't. And it's OK- that day wasn't about me, although I do wish I could have been included in my friend's special day a little more.