Rain and wheelchairs.

Weather is one of the major factors I considered when I decided to stay in Florida. It’s warm here most of the time and one of the things I didn’t want to deal with being in a wheelchair is layers upon layers of clothing. They make it more difficult to move, they get caught in my wheels, when I’m in a place that has four seasons I never know if I’m dressed right for the temperature or should I get thicker glovers or something for my face. But with good comes the bad. It tends to pour intensely here in Florida, often without warning and then it just stops and everything dries as if it never happened. Sometimes, like this weekend for instance we have more extreme conditions, like tropical thunderstorms and hurricanes. I got used to these over the years, although during my first Summer here I was prepared to hide in my hotel bathroom until the whole thing blew over. Now I dislike the rain for a completely different set of reasons. It’s been pouring most of the night and all day today with brief intermissions leaving me stranded at my apartment. But think for a second what would happen if I went outside and got caught in an intense rain. When you stand your head gets wet, your shoulder, maybe your upper chest. When you’re sitting down the area that is exposed to water is greater. Your pants are soaked, your hands and arms. Your seat and the entire wheelchair is drenched , meaning that not only the front of your pants is wet, you’re sitting  in all these wetness and your pants are absorbing water from the bottom.  And it happens really quickly. When it’s raining you can’t really wheel yourself that well  either, because when you try to grab the bars they’re metal and slippery and the water is pouring off them. You need a good grip and your hands are sliding right off. Having gloves doesn’t really help,not only because water makes them stick to the surface for a second, but also cause it rains so intensely and they take so much water in that soon I begin to feel rain running down my hands on the  inside. My fear is for my screws and bolts and my wheel parts that are metal. Not only do they get rusty but when they do and they squeak, the wheelchair gives me so much resistance.

You’d think, why not just install an umbrella? That becomes a problem for many reasons. One of them would be finding the right size and the right angle to cover the proper area. Positioning such a thing would be a major  hassle as it would have to be readjusted a lot. I have a sports chair. I have to think really hard about where I put things on it so it doesn’t alter my center of gravity or gets too heavy. A poncho is not a 100% effective. The water still gets in and I have to readjust it and pull it around so I’m covered the most. And then it either gets caught in something or just limits my movements and as you know, I need to move my arms freely. Luckily when the rain stops in sunny Florida your skin and hair dry quickly. Your clothing not so much. And you’re still sitting  in that wet seat, with your back area still getting water. And every building you go into is Air Conditioned- a cold reminder that you’re soaking wet. I really don’t think there is a good solution and often I’m not quick enough to escape it or find shelter. I tend to panic with my hands wet and my wheels wet and water getting everywhere. It used to be a big problem when I had to get to class or to an exam, rain or shine. Years ago, I would have a change of clothes at my law program’s office so I wouldn’t have to sit in wet ones all day. Yes, the Florida weather is treacherous. I guess it makes it a movie night.

Confessions of an immigrant

When I lived in Poland I was always afraid of my future where- stuck within four walls I would watch my parents age and see my own life go by. With no sense of purpose, no way to prove myself, no avenue to do anything of some importance, just wasting my life away in a wheelchair. I always felt it wasn’t fair that others got to put their talents to good use, others got to dream and make it happened. I didn’t choose to have a disability, so while you may say that wasn’t fair to begin with I didn’t really feel it was my disability holding me back. It was how little accommodating my reality in Poland was. So I decided to find a place I could thrive. And I left, plain and simple. It’s not the air, it’s not something in the water that makes me a different person here. It’s the level of accessibility and inclusion. I miss my family and today I fear the opposite.

I guess you could call it the immigrant’s tragedy. My parents are aging and I’m not there. I have a young niece and nephew that I never met. When I was visiting my cousin years ago at his Las Vegas home he told me that he calls my aunt maybe once every few weeks. And I didn’t really understand it, we were always very tight as a family and I consider him my brother. But, he explained having lived in the US since the mid 1990’s there’s not so much to talk about anymore. Because you’re not there, you grow apart. You have less and less in common and life goes on. I have mine- my friends, places, things that get me going- and they have theirs. If I ever decided to move back it wouldn’t be as easy to just pick up where you left off. But I think about my family a lot and often I wish I was there – for them. An 18 hour flight in a fixed position and no reasonable access to bathroom is torture for me and I’m in pain and stress through most of it. My dad had a heart surgery so it’s not as if they’ll me visiting me soon either. I’m not here because I have to, unlike waves of Polish immigrants forced by their economic circumstance, I’m well educated, but I experience some of the same feelings and nostalgia they do. Cell phones and Skype keep you closer, but in ways they make you more apart. It’s hard to feel like you have no roots here, like you always be from somewhere else. It was fun when I first got here, I was only planning to live here for a year and everyone found me so exotic. Holidays, birthdays are still a reminder. But it helps to feel like I’m doing something important, that I’ve set out to help people, that I’m getting the ball rolling, that I have my mother’s drive and ambition and my dad’s creativity.

Misadventures with Citibank

I don’t usually use this blog to talk about things not related to its major themes of law, disability and prejudice but today I will make an exception. A few weeks ago I decided to get a new credit card from Citibank from their Simplicity line of products. Don’t get me wrong: I have it and I find it very useful. One day however I was intrigued by the option of getting a sticker for my phone that I can pay with. The booklet that my card came with advised me that it is an option that is available for my account and one that I can order at any time, easy and convenient way to pay. Simple enough, right? Wrong. It’s been many weeks already and still no sign of a tag, sticker, Paypass or however the service is called. And every time I  call or securely message Citi on their website I get some other thing I didn’t order. First they decided to send me a replacement card, not a month after I got my first one. When I called them about it, they apologized, assured m that the tag has been ordered and sent me… a bunch of payment envelopes which I guess you use if you pay your balances by check, which I never do. When I contacted them through secure messaging again, because you know I would still like to get that payment tag I received a message that said:

“ We've request one for each cardholder of the account: Jeff and Deb Salmonsen. Please allow up to 1 week for delivery. Thank you for using our website.” One problem: I have no idea who those people are, why they would be listed as cardholders and if it was a clerical error I wanted to make sure that they didn’t send them any cards for my account. So I called their Customer Service phone service. Twice. First gentleman had a very thick Indian accent that I couldn’t understand really, who told me that he doesn’t have access to my messages from Citi Bank when I asked about the Salmonsens. The second one sounded Chinese and couldn’t understand me. He was repeating that there is nothing wrong with my account and tried to convince me that a payment tag and a replacement card are the same thing. And he ordered something. Few days later I got another replacement card. Really there seems to be no solution. Emailing them doesn’t work- and sometimes they straight out tell you to call the number and you know calling them is not going to help you either.  The balance of this adventure so far: Two replacement cards in a month that I didn’t even activate, some envelopes and no tag!

***UPDATE***

And a resolution: Since I posted the original text the Citi customer service has impressed me by checking up on me often and keeping me updated as they were trying to get to the bottom of the issue. They have called me with follow ups even within one day, were very warm, kind and apologetic. What I also enjoyed is speaking to what appeared to be a native English speaker. I don’t really care where some of those centers are physically located, but finances are too important of an issue to be connected to somebody whom I can’t understand and who doesn’t understand me and doesn’t have access to my secure mailbox messages history. What happened and what took them quite a while to figure out is that Simplicity is a brand for both Mastercard and Visa cards and Paypass is a MC only feature. Citibank apparently shipped both with the same information package. They were very swift with switching my accounts over, now I own a Simplicity Mastercard. Problem solved. It does make me appreciate my card from Chase a little bit more given how there always seems to be a live person waiting on the other end.

The Washington trip

I didn’t choose to go to Washington DC. There was simply no other way for me to take an oath of attorney for their Bar without physically appearing in their Court of Appeals on the day specified in the letter. Originally I was prepared to arrive on Thursday night, leave the next afternoon right after the ceremony. I ended up staying over the weekend and scheduled some meetings for Monday. I figured, this adventure was getting pretty expensive anyway and I’ve had a few suits and ties with me already, why not make it productive, because who knows when I would be back again? Last time I was there it was Spring of 2001 and I was representing Poland in the finals of Jessup International Moot Court Competition. DC is a funny place. With 600,000 people actually living there they have 100,000 lawyers admitted to the bar, most of them presumably not in the area. I wanted to meet some people, not necessarily because I’ve had an agenda that I was promoting but mostly to say hello, this is me, this is my disability and I have arrived. I also got to spend some quality time with my law partner and good friend Josh, who came to town to see my moment of triumph and was observing Shabbas.
People seemed to be really interested to meet me when they heard of me and my story. Scheduling for it to actually happen was a different issue. It seems people where willing to see me on Thursday and that’s when the weekend starts for people in the area. Had I known this I would’ve arrived a day early. This trip could have been a lot more busy and goal oriented because some people were not even available to meet on a Monday.  But the point was to make some initial connections and for people that I might have been emailing with or who have heard about me to finally see me in person. Sen. Bill Nelson of Florida helped the Klausner Foundation when navigating through the absurdity of my immigration case. We’ve had a relationship of sorts with his staffers so we’ve met with them to share our concerns about accommodated testing, the need for disability law awareness (and more attorneys practicing in that field) and ADA issues in general. Later that day we met with Chris Thomson- the vice president of United Cerebral Palsy and Steve Katsurinis, one of their directors. The organization, despite its name deals with a broad range of disabilities. What I find striking is although they are now a power house with offices all around the country and abroad they started off as a small community based organization aimed to assist the parents, not unlike the Klausner Foundation.  The surreal part- while I was in Washington DC talking about students with disability, more inclusion, education and Cerebral Palsy issues, Washington itself was one of the most wheelchair inaccessible places I’ve seen in a while. My friends had to carry me up the stairs to the door of their house for dinner and that set up was pretty standard for what I have seen in the area. Even the shops and cafes around the Senate offices had a few steps right in front of the entrance. I wasn't there long enough to get upset over it, but it did remind me of 1980’s Poland. The angles of some sidewalk ramps felt randomly sharp.It is also funny how as it turns out “accessibility” can mean a lot of different things. Embassy Suites where I was staying wasn’t even listed on hotels.com as having any disability features, neither were most of lounging destinations in the area, but I was assured it was.
The common problem when you travel with a wheelchair is finding a place to stay. Typically, only the most expensive locations show up on those engines as having accommodations. In the era of internet, you need to do a lot of research and by phone. Turns out in my case I didn’t need go as expensive especially for the very few accommodations I got. Yes, the hotel had an elevator (and God knows why the room was on the 8th Floor) and there were grab bars by the toilet. But for most people not having a roll in shower is a bi deal breaker. I usually manage with a bath tub. The only thing to assist me was a portable transfer seat which you could probably get at a local pharmacy for $20. I also wondered if people have any problems getting on a bed that high. When I was stranded in Charlotte NC at the airline sponsored Mariott Courtyard as my flights were grounded – they had a spacious, wheelchair friendly bathroom. But someone had forgotten to put the grab bars on the walls. But as far as DC goes,let me tell you- going up and down the hill in the area I would’ve built quite the muscle tone had I stayed there a week longer. And as a side note- as a pricier hotel that advertises as catering to business people I was surprised that their computer area was unable to print PDFs and their internet kiosks had outdated software. Not to mention, they charged extra for internet in the room!

“Visible wear and tear”

As I was cutting off tags US Airways placed on my wheelchair I found a short description of its condition. And I couldn't be more proud. Like a favorite washed pair of jeans or sport shoes you refuse to part with, I and my four wheels have been through a lot. Yes, the frame is a bit dirty, the paint is peeling, the whole thing is banged up a bit. The sit is torn, the wheels and screws are rusty and squeaky. The whole thing seemed to have  sinked down over the years. The anti-tipper wheel is missing a screw I was never able to find a replacement for and my tires are bare. We even broke the aluminium bar the back support is mounted to and it needed welding.   But there's a reason it got this way. My wheelchair is an accessory, a testimony of my independence, something I stake out and claim everyday. I use my chair extensively. It was new and quite expensive when I first got it, made of carbon fiber and titanium, but I put it through a lot.

Not only the daily mileage of going in it everywhere, rolling around  for many blocks , taking a bus. It's everywhere I fly, be it New York, Las Vegas, Washington or Warsaw. It's all the random rides at night, fun times with friends. It's the parties,  the movies, the restaurants the get togethers, it's people trying to stuff my chair in their trunks or leaving it in the back of a pick up truck. It's going to Tampa to take my bar exam. It's going to Washington to take my oath.I may be not as fast in my chair as people with some other disabilities, but I dare to say I'm just as active. Not to say I will never exchange it, but looking at it is a great reminder that I've been through quite a bit. I’m proud of the life I have.

Fear of flying

I don’t like airplanes and airports for that matter. Not because I’m afraid we will fall down from the sky and crash or because I get claustrophobic. My wheelchair makes things much more complicated and stressful and I feel so many things can go wrong while I have no control over anything- even my body. It starts with my arrival at the terminal and check in. My carry on most of the time is just to heavy for me to safely roll around with it on my lap so I need someone, a friend to help me get to an agent. From there they call a person to assist me- in a word push my chair to the gate. It has happened before that they were late, left me behind or didn’t speak any English. At the gate they should have a crew with a straightback isle chair. It’s designed to be narrow enough to fit between the sits. I’m strapped in it and immobilized while other people transfer me in an out of it and navigate it sometimes carrying it up the stairs. My biggest concern is always my wheelchair that I leave behind, especially if I see it waiting  by the plane for a while. Will they know how to fold it? Will it come back intact? I’ve had it come out with somebody else’s wheels on before, I’ve seen my anti-tipper bar fall off and it’s very easy to misplace my removable side guards. The chair gets scratched and banged up pretty badly. My other concern is will it be waiting for me in between my connecting flights.
Once when I was flying home somebody checked my wheelchair all the way to Warsaw. I’ve spent seven hours in Frankfurt in a temporary hospital style loaner airport chair and I was told not to leave their disability office/waiting area. .But that’s just the beginning. Then I need to make sure that once again there is someone to transfer me to the isle chair and get me out of the plane while I find another person to get me to my connecting flight on time. And usually the airport in between is ten times larger than the one I departed from. More stress, more waiting. But the rushing, the loading and unloading is not the worst part. The actual flight is. I end up sitting in a fixed position, not really able to adjust myself for many hours in the air and that is just torture. Other people are able to stand or move around the cabin while obviously I struggle to balance my weight throughout the seat.
And of course then there’s the bathroom situation. I don’t use when I travel by myself even if I feel I need to. There’s no easy way for me to get back there, there’s nobody who can provide any kind of assistance although I guess if I had to I would’ve just crawled down the isle to get into that tiny room. The more I sit in that fixed position the more I feel like I just have to go. And there are times that I feel ill and there is nothing I can do. Once I’ve had a bad reaction to the interesting food choices served on board of the Air France flight to Warsaw that lasted for days after I got home. Now,I know it’s bad on on everyone. But consider how much worse it is for a person with limited mobility stuck in a tiny space with no room or any grab bars or devices to help me move, stand up or turn around. When I need to use the restroom on the plane or if my body starts to ache I just close my eyes hoping to pass out and for it all to be over when I wake. But let me tell you, the whole mind over matter thing  doesn’t work. My carry on and my checked luggage are almost always randomly selected for inspection and if I’m on an international flight I expect my bags to get lost (happened twice).  Carpets don’t make it easy if you are rolling yourself around and collecting all your pieces and heading out to the exit is a bit of a challenge if you are in a wheelchair, because let me tell you, you don’t get a whole lot of assistance when you are out of that gate. So many things to think about, so many things to navigate, so many things that can go wrong. Gives you a headache?
Here’s a positive story. The weather conditions in North Carolina Sunday night grounded all planes and made me miss my flight to Gainesville. The US Airways team in Washington DC really wanted me to be able to go to an airline-sponsored hotel for the night because the next one was in 11 hours. Their colleagues in Charlotte were at first hesitant to let me leave the airport but then went above and beyond to find me a wheelchair accessible hotel and set up proper transportation, walked me to the cab  and even made sure I  got in it. I was surprised that my rerouted checked luggage actually made it here with me and I didn’t have to go anywhere, explain anything and it was all handled for me.

No new posts until Wednesday

In the afternoon I'm flying to Washington DC to take my Oath of Attorney and join the District of Columbia Bar on Friday. Every American State admits its lawyers separately- and it's an extra qualification for me that I hope will open new doors for me. It will be a busy, action packed couple of days as I hope to meet politicians, Cerebral Palsy activists, disability area practitioners and anyone who wants to see me or have me join any cause. I don't travel often and I want to make it productive. I know it's short notice, but my schedule is always open- if you have any ideas, let me know. I will not be able to write any new posts until my return to Florida on Tuesday.

The new beginning

When I originally started this blog,I expected to write about our work with kids with Cerebral Palsy. The more visible and transparent it is, I though- the more the public will understand what Conductive Education is and the benefits it can bring to those who try it. That there’s no magical approach, we’re not selling snake oil here and if you use plain terms to explain what it is, it makes perfect sense because the bottom line is- it’s about hard work. But then I realized that all all of this tied nicely into my own childhood experiences, because I’ve been through a lot of what our kids are experiencing today and as an adult I can explain it better. What I didn’t expect to find, mostly because I haven’t really contemplated who I am and why in that way is how it’s not simply a closed chapter boxed away neatly in the back of my mind. It has shaped who I am today in ways I never considered. At the same time, two things happened. I realized how much prejudice or dare I say contempt there is in America for disabilities such as Cerebral Palsy and how easily they’re misunderstood. As a person with that condition that fact affected not only how I felt about myself and my disability but how others perceived me, which becomes problematic since my profession requires me to be nothing but competent, able and trusted. The Jordan Klausner Foundation at the same time was communicating nothing about their daily activities, which I thought was a shame because a little more openness, I thought could bring so much awareness. So I wrote about myself more. The more I wrote about myself, the less it was about the Jordan Klausner Foundation. I decided to move my blog not because I want to abandon things I felt passionate about and write about something entirely different. It’s because the scope, even on its original domain has deviated greatly from what a non profit blog should be about. I’ve decided to leave JKF a few weeks ago, but it’s not the organization’s pressure made me move the content.

If I had stayed I would’ve done the very same thing. Since I’m writing about my childhood, my experiences with rehabilitation, prejudice and disability and it has nothing to do with the Foundation, it’s only fair I distanced myself from a non profit it evolved from.  Yes, I will be establishing myself as an attorney. But my passion and practice area will remain focused on disability, specifically perspectives in education. Because this is who I am. My partner happens to be connected to the Conductive Education aspect as well- he was the one who introduced me to the Klausner family and used to volunteer at their CE center many years ago. I hope to write about our history in the coming days as well as about our dreams and plans for the future. For now I would like to apologize for the confusion caused by the move.I know that it caused for it to temporarily fall of the Conductive Post feeds. But this  is something that had to happen, even if it was painful. The scope of my blog will not change.  But I feel that my talents required a different vessel and a new forum. But my fight for awareness, education and inclusion continues.In fact, some of the things we have planned will involve JKF’s backing. For now,I’m flying to Washington DC not only to take my second Oath of Attorney, but hopefully to have some meetings while I’m there that are still being scheduled and get the ball rolling.

Put disability in diversity

In America it seems that every time we talk about diversity we really mean race, color and gender. It makes sense to an extent. Those are the groups that traditionally have had worse access to education, been subjected to prejudice and unrepresented in many professions. Not to say that those issues have gone away and are now solved, but we do talk about them, we do recognize them and we have highly publicized programs trying to remedy the situation. If anything, as a foreigner I’m shocked how deeply rooted those problems are. I may not be a Hillary Clinton supporter but it was still eye opening to see how the gender factor becomes a part of the discussion on her fitness for office during the Presidential campaign, how people dissect her wardrobe and make up, how in a XXI century America a woman running for something suddenly becomes a big deal. But, when times change we see that there are other issues as well. Diversity is not only a race/gender problem. There are other groups with their problems coming to light only recently. I would think that economic status is one of them as it severely affects access to education, job perspectives and self image and last but not least – disability.
During my combined time at the Levin College of Law (5-6 years) I have only seen two other students in wheelchairs. One of them I believe was a wounded soldier, so he never had to deal with what individuals with childhood disabilities face going through lower levels of schooling. When I was attending a number of these prejudice forums and panels and- again a funny thing- only this year the City of Gainesville decided to expand the topics of their community meetings beyond race and color, one thing was clear. The under representation of the black population among people that get advanced degrees or even go to college stems from the fact that many drop out of high school. Before you get to an university you need access to elementary and high school education and good enough for you to be able to compete for entry to those higher level institutions. It sounds obvious and is true across the board. Individuals with disabilities may not be dropping out, but the problem is essentially similar. You need to get them to through a good elementary and high school, give them an actual education, the drive to learn and the hope that they can improve their own conditions. In their case the exclusion from the system is often involuntary. It’s not that many of the kids with physical or intellectual conditions don’t want  or are unable to learn. Sometimes they face problems that have nothing to do  with their abilities. During my time at The Jordan Klausner Foundation I’ve noted that many of the parents  of Cerebral Palsy really struggled educating their children. Negotiating with school boards became a problem to an extent that some were looking to consult an attorney. Some were poor. Some were uneducated and didn’t know either that they have rights or how to go about them. Some were single parents. And with a child with disability even a thing that seems very technical like transportation can become a major roadblock that may derail any plans for further education. As you go further it becomes more complicated with accommodated testing, formalities, navigating between all these other institutions. To take the LSAT, to even think of becoming a lawyer or any one of these other high end professions you need to take all the steps that get you here. So many things can go wrong along the way. And even then, you may not get it. No wonder so few people end up on top. I have only lived in America for 8 years, but I‘ve already lived through my share of prejudice, injustice, neglect from a number of people and institution. That’s why we want to focus on education in disability law not only in our practice but also teaching the public. A mind is a horrible thing to waste. There are too many opportunities to waste them along the way. People don’t know they have rights. Some of them are told they don’t have any. When they call to complain they may be told they don’t have a complaint. Or that they lack standing.  As we go into communities and promote accessibility, education and inclusion, some of the people we talk to may be future attorneys. Or Supreme Court Justices. By providing more awareness in the general public, we can help The Florida Bar to realize its diversity aspirations. The American Bar Association Journal also addressed the issue of disability in the diversity mix: http://www.abajournal.com/magazine/article/left_behind_aba_says_make_disabilities_part_of_diversity_mix_on_federal_ben/

Safety

A policeman stopped me on my way home in front of my apartment yesterday. He asked if I was ever robbed and noted that the bag that hangs from the back of my chair that I use for storage and shopping looks like a purse and is very inviting for somebody looking for an easy prey. And that is a valid concern. I'm very much exposed when I'm out in my wheelchair and there's no good solutions. The backpack attracts attention. The wallet manpurse just rests on my body hanging from my neck. Somebody can snatch it, pull it from me. At the same time I need to be able to store things and have things on me.  And it gives me very little control over what happens to me if somebody just came up to me, 'I have very few to no options to defend myself. They can push me, pull me, hurt me or grab my chair. What would I do? It happened before that someone would get uncomfortably close, in my face, in my private zone just to make a point. Back in Warsaw my dad would have me carry pepper spray or some kind of gas container. I am just sitting there, uncovered, unarmed at somebody else's mercy. One time at a bar a strange guy came up to me and started licking my face. I didn't find it entertaining and although I was violated I found it mostly shocking. That it just happened, that it happened so randomly, that it happened to me. With my friends entertained by my "what did just happen" reaction. I was lucky enough to have never been attacked thus far [although I was the customer at the counter of a Subway store when a man came in and pulled out a gun at us] and I do realize how often we take things for granted.... I did have strange characters, mostly loud drunks follow me home on some nights. My good friend became so concerned that she made me carry her pocketknife with me for a week. On most nights I feel safe and I consider Gainesville a relatively safe place especially on my route home. Even the homeless in my neighborhood know me. And I know that it doesn’t mean anything and it gives you a false sense of security. People who were attacked probably felt safe before that too.