Alternative compliance

You can't not notice that I have a disability. All you have to do is look at me, maybe even hear me. You see it in my posture, often even in the strain on in my face as I speak . And of course there's the wheelchair. Some even easily guess what condition I have. You really can't miss it. There have been  numerous articles written about me, videos of me floating on the internet, in October I'm flying to Germany to discuss my life with Cerebral Palsy as a keynote speaker at a Conductive Education World Congress and over in UK some people wish to adapt some of my writings for an upcoming book. There's no denying I have a disability. "These days a man has to prove that  he is not a camel" wrote Polish political fiction writer about the overwhelming bureaucracy that has  taken over are lives. Some things are obvious, and require no proof further than common sense and good will. And I feel this is what I'm dealing with today. I'm a member of a few bar associations as I'm licensed to practice in both Florida and District of Columbia. Both require a newly admitted attorney to attend their state specific ethics course, in person within their first year of practice.

 Florida has no alternative ways to fulfill this requirement- they had given me extra time, but at the end I had to find a friend kind enough to drive me around the State, miss work, stay the night and assist me while I was there. District of Columbia does. They allow for a person to listen to an audio lecture ( not online as I believed, in situations like " extreme hardship"  or disability. When I went to DC originally to take my oath a year ago, I had a friend who drove up from New Jersey just to assist me on that special day. And I'm glad he did. Given how little wheelchair friendly DC felt when  I got there I would have a really hard time being there on my own,  considering I really don't know the city , where everything was, how to get where I wanted to be and even finding the right hotel I could have get into was a challenge I wrote to the DC Bar that I indeed had Cerebral Palsy since birth, it severely limits my mobility, I often require forms of assistance particularly while traveling and often prolong travel is hard on me. And my presence in the District would be required for less than a day anyway. I felt the bar might realize that given the planning, the accommodations, the assistance needed for me to to attend in person, the hassle of air travel, loading and unloading of my wheelchair, the stress, the bar would be a lot to deal with. That when they see what I'd have to go through they'd be sympathetic to offer me alternative compliance.  It's not that I don't want to fulfill the requirement. But it's not necessary for me to struggle as much and I can do it at home. Before I sent anything I called the Bar to make sure what kind of support of my  hardship they were looking for. I heard that they would not be able to tell me over the phone if something was or wasn't enough, but they needed something to prove my claim. That part made sense.  People can lie, cheat, although we've all taken an Oath and what I was asking for wasn't some amazing benefit in the first place. What made less sense during that first conversation is that they stated clearly they wouldn't tell me  on the phone what was and what wasn't sufficient and I would have to wait for them to evaluate it to see if they were satisfied.

  What I understood on the phone was that if my disability renders me unable to travel I should get a note from a "treating physician". It's very hard to explain that while I'm not "unable to travel" as in risking my health, my disability poses an extreme hardship. Because I do have limited mobility as I  have quadriplegic Cerebral Palsy. All of my limbs are spastic. It is only my left hand that we were able to get to a functional state through years and years of rehabilitation. My condition is not progressive, it is not like say, the flu. I do not have a "treating physician" since I'm not in treatment for anything. To be fair, the bar used a physician note as an example of what would suffice and today they called me to clarify, but they couldn't discuss over the phone what would or wouldn't be enough. I have a month to satisfy the request.

And I'm from Poland. I only moved to America 8 years ago. If I wanted to get a note from a "treating position" - I'd probably need to locate my doctor in Warsaw, from twenty, twenty five years ago.  I don't have a doctor, I don't even have insurance. Quite frankly, even when I did back in school, they didn't even need to examine me to fill out my accommodation requests, all they had to do was to look at me.The person on the phone has advised me that I should submit some substantiation  of the circumstances I'm talking about. So I sent them a few articles from Florida press that discuss my accomplishments, my limitations and my life in a wheelchair. They say that isn't enough. I could offer them a few videos, but I doubt  that will be enough either. Being a foreigner makes it harder because I really don't have an  extensive medical file. So as I roll around the room trying to figure out what to do, I'm thinking of ways to convince the Bar of something I knew all along. Who knows, maybe the Bar will choose to disbar or suspend me over this. Because putting my body through a strain like that is not something I'm willing to do easily.But oddly enough it would be because I couldn't convince someone that I have a disability and that doesn't happen every day. 

Elevator

I went to a local bar last night. It was on the second floor, but luckily it had a lift inside. You entered through their little convenience store downstairs, went all the way to the back of it and there it was, right next to the bathroom. I'm not going to lie- it took a while, for them to get it running. You could tell this is not something they deal with every day. Apparently they have been using it as a storage area for trash and storing empty cardboard boxes. "For something we don't use a lot it takes a lot of room"- the man explained. And I could understand his point to a degree. He is a business owner. The space is a valuable commodity and an elevator nobody uses kind of gets in the way. He didn't mind it was there. And he didn't mind getting it to work to take me upstairs. But my arrival did cause quite a commotion. So much so, that I felt a bit obliged to stay a while and at least buy a drink. As I waited a bit for them to take a lot of the trash out of it and some other random items that I guess had no proper place inside I started thinking how low on the priority list of a business owner, any business owner wheelchair access really is. Don't get me wrong, they were very eager to get it running for me. But more and more trash came out of it and I waited and waited. Waiting you get used to. I wait for the bus, for a ride, for the rain to stop, to be securely hooked and unhooked. And patience is one of the things you learn. As long as I get where I need to go I don't really mind a little inconvenience especially when you see that people want to help you. That they really want you to participate in whatever it is they have set up. I know things happen. But then they couldn't find the key to operate it. I have no idea what was going on upstairs as I only heard voices, they were looking for it. They were trying to look inside. They were trying to reach into the shaft, get some light in there. They were looking around with their cellphones, they were trying to find a spare. Then they decided to retrace their steps and look again. A lot of work just to get me up there and clearly they were not ready for me as I walked in.  Things take longer when you are in a wheelchair and  a situation like that is not uncommon. I waited and waited. I was thinking about going home as they couldn't find the key, because I started to feel a bit stuck. And still I didn't mind.  I did however stay and ended up going up there. "We use it at most four times a year" he explained and I pondered why that is. Don't other people in wheelchairs go out and socialize? Maybe it would be a good idea to reach out to the disability community and get the money's worth out of that elevator so it doesn't double as a trash shoot. We are wheelchair friendly, we are inclusive, you are welcome here. Maybe with a bit more information people with disabilities would be more likely to get out of their houses and do more things. I know I haven't been out there because I  didn't know they have a working elevator in the first place. The last time I checked they were still waiting on some replacement part to arrive. But perhaps accessibility can be something more than some dreaded laws mandate. Maybe it can be something you build a positive campaign for your business from. And create a buzz that the media can pick up. With a simple message. We care about community and people of all needs! What a novel idea.

Aftermath or Pick up a copy of the Gainesville Sun today (again)

The Gainesville Sun ran my text about the two inconsiderate girls that kept the wheelchair bathroom occupied while they were socializing inside today. Many of my friends were fairly upset when they first read the piece. Some wished they were there as it happened, because they would have said  or done things that would have put the young women in their place. While I think it's amazing to have people in your life willing to stand up for you, no pun intended, this is not why I wrote the piece. Because it isn't so much about a one outrageous, isolated event, although it is a true story. I could  easily put together a separate blog titled "Things that happened to me while waiting for the restroom" or "Ways that people are mean to people with disabilities". Situations like that happen and they are not uncommon. This is also not about me being really angry, fuming or obsessing over the situation. I was fairly mad as it it happened, but it passed. Because you do get used to things like that happening and you come to expect it. It's not right, but you get used to it. I wrote about it, because it did happen to me and perhaps I can make some people think. Think about their own conduct. Or perhaps they will speak up next time they see they see something like this. Or maybe they will have a better understanding of what it's like for their friend who has a disability and deals with things like this every day. Here's the thing about awareness: How will you know that something is a problem if we never talk about it. Don't get me wrong, the event itself was upsetting. But what I don't want you to take out of it is that it's only about that one night, one restaurant my bathroom. A casual observer might get frustrated or angry, may want to give me advice or do something about it. Even my mom was concerned as she read it. But if I got mad every single time something like that happened I would be mad pretty often. Because you only see glimpses into my life that I choose to share with you, I'm in it for the long haul. In one of my other pieces I even identified a server that was banging on the door as I was in the wheelchair cabin. Whenever I have a bad experience at an establishment that I share with my friends, their response usually is that they would never go back there. I try not to attribute every little action by inconsiderate staff to the restaurant or chain and blow things out of proportion or I would quickly run out of place to eat. A friend of mine had a bipolar episode at a place like this once and this, coupled with a very unprofessional and disproportional reaction from people working there got them banned from there for life. At first everyone we knew tried to be supportive and vowed no to go back there. But soon we've realized that this isn't really accomplishing anything. Their business isn't really hurt but what we do. In the grand scheme of things, given the volume of customers they get they couldn't care less if we come and go. Yes, for a while we felt very proud for making a stand, we were "showing them" whatever in our mind "it" was. But effectively, all that was happening is we were not having any fun while no one else noticed. It's very easy for a person with a car to say, I wouldn't go there. On most nights, unless I want to deal with the bus at night I'm confined to my neighborhood. That is a limited number of places I go to, this is where I live. This is where I eat. This is where I have fun. I'm more interested in educating people, in bringing those issues to life than making grand but empty gestures, boycotting a place or two or telling a random girl I will never meet again off. This is bigger.
Please read the Gainesville Sun submission http://www.gainesville.com/article/20130311/OPINION03/130309638/-1/opinion?p=3&tc=pg

Late, late, late

I don't know what it is... I always plan to leave early. But then something happens. Something at home that keeps me at home a minute or two longer that in turn makes me try to make up time, fighting  for every minute so I won't be late. Knowing I have to be there in thirty, twenty minutes doesn't help My right hand gets tense and I can't put my glove on as quickly. Or it took me a while to reposition my chair and sit in it. Or a shoe didn't slide onto my feet like every other day. My pants get caught on the metal sticking out of my wheelchair. Or quite simply I can't find the keys or the ticket although I just had them a minute before. I love going to see a play every month and the theatre is right next door. Yet, by one reason I always end up arriving just in time, although I should have made it a few minutes earlier. It's this thought in my head that I need to hurry that makes be panic half way through. I have twenty minutes. It should be more than enough. It  doesn't even take ten minutes to get to the coffee house next to it on any other day. But on the day of the play it takes much longer. Because suddenly, I know I'm running out of time. And people are waiting. And I don't want to be the one that everyone is waiting on. And then, my right arm locks in tension. And it feels like I'm fighting my own body just to get there. The announcer's voice doesn't really help. I can hear it from my house as I live right next to it. This your 15 minute call... 10 minute call... 5 minute call... My body is unpredictable when stress and tension takes over. And the idea that the clock is ticking and I'm not there effectively slows my down. The moves take longer, my heart beats faster and I freeze. I would have been there quicker if I wasn't so focused on time... If I just learned to relax. But then, this is exactly what happens in a standardized timed testing environment. My cheeks burn, I turn red , my breath is short and I struggle to move.My hands turn stiff and get really heavy. It's like I'm forcing myself to move forward. I seem like a deer in the headlights. Last Sunday I felt like I pulled something in my arm while going up the Hippodrome ramp. I've decided to pull myself up all the way by the railing with my left hand. I know I need to get to the elevator and then find my sit. I'm fine as long as they see me in the building. They won't start without me. Yes, I suppose it's good to plan as if I didn't even have the last thirty minutes. But then, that is not even my point. What I'm trying to get across is how much of an unpredictable element my body can be with all the tensions and how a little, unplanned delay can have huge implications- A minute here and there costs me dearly. What I'm also explaining is how connected by body and mind seem to be. How sometimes it feels like I'm battling my own body before I take on any outside circumstance. And how much easier it would have been if it cooperated with me a little bit. I never fully know what is going to happen, but I know myself well enough to plan around it. But I not always can. With adrenaline pumping, red, sweaty and tired I entered the audience with three minutes to go. And then the play was delayed maybe five, maybe ten minutes as other people kept pouring in.

Another disability bathroom story

If you're waiting in line to the wheelchair accessible bathroom be prepared to find that an actual person in a wheelchair may actually be inside. And that it might take a bit longer. And no- I have to say constant knocking on the door doesn't speed it up and neither does saying things like: "There's a big line" and "Everybody is waiting". I don't know what to tell you. Perhaps go wait in front of the general access bathroom that was designed especially for you (because I know for a fact that it wasn't designed for me). Tuesday night. Another bathroom story, my usual hang out place for drinks and socializing- The Top restaurant. As always everybody tries to get into the wheelchair accessible cabin, separate from both men's and women's restroom and the only one in the place, not because they are in wheelchairs but because they think they are smarter and are able to beat the heavy traffic of the regular ones. As usual there's somebody inside inside as I await my turn, no surprise- it's an able-bodied hipster boy but I don't say a word. A minute after I get in, the knocking begins. And it's not simply knocking- it's really heavy banging on the door. On few occasions someone tried to forcefully pull the door out, I'm surprised the knob was still in as I left and luckily there was a metal bolt on the door.  Let me tell you, it doesn't help me if I'm rushed. Often I'm in a very delicate position balancing my body weight transferring in and out and it takes some focus. Welcome to the world of Cerebral Palsy. A few years ago a journalism student was doing a photo project about me and he wanted to follow me into the bathroom. "People need to see how you pee" he said half jokingly. I didn't let him in, because I believed that people needed to see no such thing. Over the years though, I started to see his point. "People" don't know how much effort and focus moving around requires. There's always some planning and some figuring out. At what angle to I come up with my wheelchair? Where do I grab? Where do I pull? Where do I put my hands, my feet and my knees? See, where you walk up to the toilet you pull your pants down, sit, stand and pull your pants up again. My knees are spastic. They rarely go beyond the 90 degree angle position, meaning I can stand on my legs a little bit, but only long enough to transfer and quickly sit on something else. I need to have just enough space between the wall and the toilet to turn a bit, pull myself up on it all while getting undressed. And for me it's quite an exercise so before I do it I need to brace myself and gather just the right amount of strength. Often as I do it, something goes wrong. The chair turns a bit sideways as I'm already up, I lose grip on my equally spastic right hand, my foot slips or I fail to properly land securely while transferring my body weight. In most places, the toilet paper dispenser is right on the level of my knee caps. At the top specifically, the toilet seat moves from left to right. When I push myself into it I really need to watch out that my skin doesn't get caught. Again I pull myself up by maneuvering my body weight side to side in small movements. I doesn't take an hour. It doesn't take thirty minutes. But it takes more than ten. And that's assuming no other complication happen. Sometimes I miscalculate my center of gravity, come at a wrong angle or lose grip. Sometimes I slip. In those situations I end up on my knees or on the floor and the goal often is not to land in the puddle of urine. Then I need to muster some more strength to roll over, find a place I can securely pull myself up to stand while pulling my chair towards me with the other hand. If it sounds complicated it's because it is. Have you tried pulling your pants up while sitting down? Of course you haven't I dare you to try. We all have different levels of mobility so we do things differently and it may take longer. It is also worth remembering that while I'm not one of these people there are individuals with disabilities who have specific hygiene and sanitary needs and procedures that also take some time. But you wouldn't know that, you pull up your pants and go. There was some banging and yelling at me inside last night. When I finally opened the door it was one of the waiters waiting with either cleaning supplies or refills. "Where you the one rushing me, Larry?"- I asked. "I was the most recent"- he replied - "But there were other people waiting". " Hey, what can I say,"-  I shrugged- "It will take as long as it will take

A little consideration goes a long way

I remember my first trip to the Disability Resource Center at the University of Florida. The first time that I felt that as far as my condition goes, I've had somebody who is on my side, someone who understands my limitations. I was sweaty and tired being on the bus system for a bit, trying to find this building that couldn't be more isolated on campus and it tried. I wanted to be on time. I was prepared for a really long conversation about what it is that I have and how it affects me. I was expecting them to demand loads and loads of paperwork, my medical history, current evaluations and for them to be skeptical about every single thing about me I reveal. That's what it felt like in Poland. The Disability Office at Warsaw University made me feel like I demanded special treatment when I asked for exam accommodations or any modification to my schedule. It felt as if I needed to defend myself every time I  walked in with a problem. It seemed convincing the Chancellor's proxy for disability affairs was as big of a struggle as convincing the Chancellor himself. The Office Director was a blind man. He took great pride in telling us the stories of how he was able to study abroad with little or no help from others. And I understand his point. He wanted his students to be  independent and  a lot of them seemed joined at the hip with their mothers. This was particularly true with those with  Cerebral Palsy. Many had overprotective mothers that went everywhere with them or did everything for them. Often the office would speak not with the student,  but the mother. On the other hand, he didn't have a motor disability and really couldn't and didn't understand what it must be like. How it limits you and what it does. And as noble as his intentions may have been it was really not his place to raise us, as we were adults. It felt odd when it seemed like I had to explain myself to him. But then, it seemed like that everywhere I turned to in Poland. Doctors, benefits referrals.   Like I needed to defend myself and to prove I'm not using my disability as easy ride. Imagine my surprise- when I come to campus in Florida gearing up for an argument and the first thing they ask is if I drank enough water. And then they insisted I have some. The man I had an appointment with was in a wheelchair himself. He told me that when he was in college he was afraid to drink. Because back then using a public restroom was problematic if you had a disability. He was also interested in getting me to calm down and breathe. It felt so amazing not needing to explain myself or being accused of things for once. Not only did he not question I needed the things that I needed but also had some ideas and suggestions of his own. It's astonishing how much better you feel about yourself and your disability if you're treated with consideration and respect. When you're met with understanding. But then, that wasn't the only time. I've written about my turmoils with immigration a few years ago. How I felt misunderstood, broken and lost. How nobody seemed to care and no one    would listen as you yet again tried to prove something. What really brought me back was the treatment I got at UF's International Center. When I got through the door all worked up with another piece of bad news they would stop me right there to take me out of that mindset. A human reaction. A little bit of care. Somebody who listens. "Take a deep breath" they would say. "It will pass. It's not that important. Don't let it get to you". I didn't need to prove anything or explain myself, it felt like for a second there they cared about my well being. And that made a world of difference, although it didn't solve any of my problems. Human beings being human- isn't that a revolutionary thought?

Mom.

I often talk about what my parents sacrificed when I was growing up to focus on my education and physical shape. I always mention my mom, who quit her job and stayed at home after I was born until I was in my mid teens and my brother was in college. But when the time came, she did another extraordinary thing. She rejoined the work force and became a great success. It wasn't as simple as going to work somebody has saved for her. She had to start over. She needed to gain new skills. The world changed dramatically during the period during which she was a stay home mom.  While she was caring for her Cerebral Palsy child, technology has taken over, new laws and accounting practices were in place. I can't imagine how much courage it took to do it, to try and keep up, to put yourself out there and pursue a new dream. I don't think I tell her enough how much I've always admired that. Some of it was at team effort. We've shown my mom some basic computer skills. I don't  think my brother ever had the patience or time for it, so most of the time it was me. Often you had to explain everything step by step, sometimes more than once and I remember how she would write everything I said - down. I would also help with her English, and we would listen to songs and write out lyrics together. Yes, it was harder at the beginning because a lot of it had to feel like an entirely new world. And some of it required a lot of patience. Initially she would get things as easily as I or my friends did, but I had to remind myself to slow down and do things over. I think this is what families do for each other. They help. They work towards a common goal. Sometimes you learn, other times you teach. For months to come I've seen her attend accounting courses, an update on her outdated college degree. She was determined to make it, to offset her age she needed to be better than anybody else. We live in a tough economy. I hear a lot of people of all ages, often as young as straight out of university complain that they have no jobs, no skills, no concept. What can I tell them? Life is hard. But whenever I hear them looking for excuse for not trying harder, I remind myself that my mom was in her mid 40's when she went back to work. She had all the odds stacked against her. Her competition was most likely half her age and technologically savvy. But she had determination, a drive to succeed. She didn't mind the hard work, because she knew she needed it  to move forward. Part of it had to be new and exciting as she felt she was learning and growing. After her kids were grown she needed to find new goals and fullfillment outside of the house. She loved being a mother, no doubt, but she has always been so much more. She deserved to do something for herself, to reach out and make it, to reorientate her life and find new goas. So many parents caring for kids with disabilities don't know what to with themselves after they dedicated themselves and they not needed as much. Getting back to life, to reality if you will has to be challenging. To own it is an entirely different level. I like to think that I take that ambition after my mother. It tough me that if you want to accomplish anything you must not get discouraged. Fight and try. Dream big. The focus, the work ethic and the love for what you do. My mom really loves accounting- reading up on new laws, going through new rules was often her bed time reading. She  finds joy in  learning new things and making discoveries in the field she's passionate about. It left with a belief that true talent will eventually shine. But you need to take charge over your life. But you need to try and try again. That was the amazing thing- at the age that most people feel like they no longer can compete she got a brand new life- and new ways to feel fulfilled. And with every new job and promotion she was challenged and she challenged her. How can you not be proud? If you look for a story that inspires me-look no further than my mom.    I don't tell her enough, quite frankly I'm not sure I ever did