Monday, September 15, 2014

A girl from B-11

Recently a girl I've never met decided to stop and say hello as I was rolling up to my apartment complex. Must be a neighbor- I thought. I couldn't even tell you how many people from my building I recognize and nod politely and I see everyday. I don't know their names or anything about them, but sometimes I exchange a sentence or two on the weather, something the landlord has or hasn't done or how the Gators performed. It would have been embarrassing to introduce myself  at that point, so we continue to smile and nod and wish each other a great day or passing each other by the mailbox. An hour or two later the girl saw me again and decided to acknowledge the fact that isn't this a funny coincidence, we seem to be bumping into each other all day. A lot of people seemed to be walking back and forth between the parking lot and the building, so then it occurred to me it must be the move in day. Although I have been moving quite a lot within my apartment complex over the last five years, it's been a while since I had to go to a place that it's new to me entirely and pay attention to such dates. To some people this happens every year. As I got into my phase and started making my way to my door on the other side of the grass, the girl that I didn't know stopped me again. They were just bringing in her belongings. Her friends, her parents and some other people were to help out and they all came outside to introduce themselves to me, as if I was a friend of hers that goes way back and has interesting story to tell, rather than someone she just met that day. But that's not the funniest part. She was moving into my old apartment. Well, not the one I just moved out of,  that would be too strange. but the one I lived before that. The tiny, tiny studio. The place - that were we unloaded all my packed up belongings in trashbags piling  them up, they still took up three quarters of the floor. A place that has more of a kitchenette than an actual kitchen (although it did have a refrigerator). Very little counter space- put away any appliance if you want to plug in anything else kind of a place. A kitchen so narrow that they had to remove the sliding door obn the left side for me to get by in a wheelchair. I don't even know if you can call it a kitchen. As you went in, the stove was on your right, but your clothes closet was on the left. Yup, my suits used to hang in the kitchen. Not to mention that the "closet" wasn't big in the first place and I've had a lot hard time figuring out where to store everything else. I remember having bad raisers and boxes sliding from beneath my bed just to get a bit more room. I remember my parents were shocked I would choose to live in a place so tiny, and then spent three weeks putting shelves on every wall imaginable so I can put my things away. We've also had a hard time fitting my portable washer and dryer and my had to make the stand more compact my cutting a lot of the metal. I'd say it'll be hard for anyone to live in a space that small and not feel cramped.  At least if you have any belongings at all. But then I was in a wheelchair, so building large bookshelves all the way to the ceiling was not an option for me. As I left them they we getting excited about wooden floors. I'd say, no matter how shiny they may be or what color you pain the wall, there's still only one window that doesn't give much light and the room is tiny, which you only realize more when you put the furniture in. I hope she's still as excited about that place when she moves out. I know I couldn't live there.... again.

Wednesday, September 10, 2014

Cerebral Palsy adulthood

A few days ago I was asked to support yet another Cerebral Palsy campaign aimed to bring more awareness to pediatric care.  I applaud causes like this- I'm pretty open about my own experiences growing up and going through life with CP. This particular one was about T-shirts meant to generate income for treatment of prematurely born babies. More power to people who decide to put something like this together and do something for others. I hate it when after a sentence acknowledging someone's creativity, hard work and kind heart a "but" comes along, but here's mine. I'm really concerned with Cerebral Palsy being seen as a childhood only condition. All fundraising efforts that I've heard of all the CP campaigns that I've seen are about children. As if this is a condition that you can magically grow out of when you turn 18 or 21. Like it's something that passes with time. Yes, with the right type of education you can be independent and functional. With rehabilitation you can have more mobility and ability in your limbs. There are perhaps as many palsies as there are those who have it, because everyone's is a personal, irreplicable story. With the right kind of approach you can limit how it effects you. But you never stop having Cerebral Palsy. It sees to be that with all the resource, time, money and effort (as it should) focused on children and babies, beating CP, combating CP, eliminating CP or however else you may see it phrased, the expectation is that it will somehow go away if you work hard enough. And if you would evaluate the number of resources and literature available about this condition you'd indeed assume that it's all about children. Part of it isn't hard to understand. A lot of non profits, campaigns and fund raisers are started by parents. Parents who don't have the right resources who colloquially speaking are "pissed off" that their child was placed in this condition and want to give them every opportunity as they grow. The interest dies off perhaps somewhere between high school and college, maybe when the kids themselves emerge as people with their own ambition no longer wanting to be seen as a cause. On the other hand- we must admit, babies are cute. Kids at harm, hoping for a better tomorrow, to be able, to be normal speak to many people wanting to make a difference. My concern is that they will see CP as "preventable" or "curable" with big enough of a push. And I have to say, having the same condition I've had 20, 25, 35 years ago I don't see a lot of therapy, information, networking, treatment options for people like me. When you think CP you think- babies- when you think of adults with disability- a horrific injury comes to mid. It starts with the condition's name - in Polish it translates as "children's palsy of the brain". It is to mean of course to indicate that you get is as a child, but through its' name it remains forever linked to childhood.

When I visited Poland in 2007 I wanted to plan for a knee surgery I skipped on when I was a child. The spasticity got to me and I wanted some more movement. We dedicated quite a few days going through surgeon to surgeon. The regular doctors had no idea what to do with me with one famously telling me to have my legs ampuated. It wasn't until I met up with my childhood doctor that she pointed us in the right direction. A man who operates on CP children, understands spasticity, knows CP and focuses only on that. I was planning on returning the next year to have it done, but immigration situation that wasn't resolved until much later prevented me from taking that risk. You'd think that United Cerebral Palsy would be a great starting point for someone like me, right? Turns out, despite it's name it's actually a general disability focused organizations. Those interested in CP causes may feel misled. Famously, there was a campaign a few years ago to have UCP drop its name. As an established brand they were of course not willing to do it, but you can't blame those mothers of CP children who felt donors and grant makers may feel that they're supporting an actual Cerebral Palsy cause. I'm as spastic as I always have been, with some aches, pains and stiffnesses setting in and later life. But I have less support. One of my Directors who I lured to my Foundation told me that she was excited we didn't focus on or singled out children. Because- she reasoned - as bad it is to grow up with a disability, kids usually have parents to guide them along and families around them. Adults are often left to fend for themselves.

Sunday, September 7, 2014

Height

How tall am I? It's hard to say. It's been a while since anybody saw me standing. When filling out applications my parents put whatever number felt reasonable. Depending on how generous they were, I was anywhere between  171 to 178 centimeters. It's not like there's a way to know or anybody will check. When I was getting my Florida ID card for the first time, the DMV official asked me for my height. "Your guess is as good as mine"- I said. "You look 5- 08" she replied. And that's what I've been telling people ever since. It's not that I simply can't stand. If you try to lift me and get me to lean on something my knees are perpetually bent and my head is much lower than it should've been.It feels that with every passing year the spasticity and my body puts on my knees only increases. They bent more and more and it feels like my body weight presses me more and more to the ground. The last time you could see me standing I was in my leg braces with straps physically blocking my leg in the straight position. Without external force used to lock the brace (which was always painful and as I grew required more people to do it) I would never be able to stand. I remember one of the last few times we tried it I noticed, being I think 17 at the time that I towered over my mothered and it was a bit of an emotional moment for us. I guess you can take some measuring tape along every bent part of my body and then you'd know what my real " body length" is. But then, one has to ask, what is the benefit of knowing the height of a person that never stands? That couldn't stretch out their legs if they wanted to? Perhaps more informative would be to measure me in my sitting position from the ground up to the top of my head. This is how people see me everyday, and no doubt how they described me if I became I wanted man. But then, all chairs are different. Even mine, when one of the bolts ripped away from the metal frame suddenly became lower. Perhaps they should force me to stand on my bent knees, just to measure me. But that changes not only with time, but also depending on how tense, tired or relaxed my knees are. Maybe they should measure how body spreads out, from the highest point on my head to the furthest I can reach with my feet. A lot of those places, documents and institutions that ask for things like height, weight or "marks" are simply not prepared to deal with people my wheelchairs. Despite being in one ultimately all my life my passport says I have no distinguishing marks. It's not that I've been hiding either. I get that they're looking for mostly facial features, but if border patrol was ever to look for me don't you think that something about my sitting position or four wheels would be a better hint than any mole or blemish? My Polish ID has some unrelated leg condition listed in the remarks sections, because I guess it was the closest they had. Time and time again I'm reminded that this world wasn't created with people like me in mind. And when dealing with bureaucracy sanity always leaves the building.

Friday, September 5, 2014

Running through a meadow.

When I was very young my mom would ask me to name three things I'd like to have happen if a genie or a magical gold fish granted me three wishes. She'd be very surprised if I threw in "walking" as the third one, not a top priority. "You just wasted a wish"- she'd tell me, when I finally did "because that would have been one of mine". I guess that story kind of summarizes how I saw the need for "walking" over the years. I saw the convenience of getting around with ease of course, it'd allow me to be more like others, to stand out less, to not need special accommodations and solutions just for me.  Others probably wanted it more for me that I ever wanted it for myself. Of course, I saw the value of what it could give me, but by itself it really had not much value as a goal. I never had a dream of running in the meadows only to wake up to the harsh reality. I don't know what it's like to long for it or to miss it and it's mostly the outside world that has been projecting onto me their own interpretations of what I think about think and feel about. A few things made me think about what "walking" is to us in a second consecutive article. I have a friend who's looking at the gloomy perspective of becoming permanently disabled, losing control of one of his feet. To me, the most important part is how he emerges out of the process- if  the worst happens and there's nothing he can do to prevent it. That whatever the news is, he knows that he still have a life, hope, passions, ideas and work. I fear that that scary perspective might be blocking him, shutting him off from the world only making things worse. I also know that it's not something you can rationalize or tell him what to feel. You can't shake somebody to simply get over a thing that's so tragic- its their own process that needs to take its own course in its own time. I also realized that I can't really relate very well to what he is going through as this is one of the aspects of disability that I have ever experienced. As an intelligent human being I can of course try to grasp it, as I understand pain, loss and suffering and I can liken it to things I felt and been through before, and I can empathize with another human experience, but it's not the same as knowing. I felt he needed someone who understands what it must be like better, so I asked one of my board members who after a botched, life threatening brain surgery became severely limited and yet got on with his life to reach out to him. And then I was left questioning the "value of walking" yet again. Is not being able to walk what my friend is afraid of or what it means to his life? Is he afraid of changing or adapting to new ways of getting around, or is it aesthetic? Will he feel less then if he won't be able to do the things he was able to before with ease. Will he be able to carry on with his life or will this one limb, body part just take over every aspect of his existence. How is it that the things we took for granted become major missing parts when we can't do it anymore? I hope, if the bad news comes, that he doesn't go through life romanticizing what he has lost. That he doesn't dream of running through a meadow although he never needed to run a meadow before, he doesn't focus on the things he feels were taken away from him. That, disability or not -that he sees himself as capable as he always was.

Tuesday, September 2, 2014

Walking

A lot of people were shocked by true confession that not being able to walk is not the worst thing about being in a wheelchair, at least for me. A week ago I ranked having to ask people for help, not being able to reach things on the highest shelf and often being left behind when my friends decide to go up a floor as aspects that affect me every day much deeper. Perhaps it's because today my wheelchair is fused with the essence of my being that I can't imagine my life otherwise The world as I know it I experience from a perspective of a wheelchair. All my future plans, my profession, where I go and what I do involve me having a disability. The way I see myself, the way others see me, how I think, what my dreams are, what inspires me is all linked to it somehow. I have 35 years of experience in Cerebral Palsy and you could say it's all I kmow. Who would I be if this lifetime of disability didn't bring me to this place and this moment? Maybe I wouldn't like that person. As we develop the "Tell Us Your Story" campaign we get to talk about disability in great depth. About what it means to me and what it means to other people. And how the outside world sees it. I've of course walked before. When I was a child my parents would grab me under my arms and powered by their strength I'd run around with my cousins. The Peto Institute put me in big, heavy leg braces that would go into my orthopedic shoe and hurt my feet. In school my parents would grab me under one arm and walk me up the stairs to class. By the time I got there I was exhausted. I guess to me any form of walking always meant pain. Without braces my knees would be perpetually bent and my legs would feel tired very quickly. I've done it all, walking sideways up the stairs holding onto railings, walking with a person in front of me going backwards holding my arms, my body weight is just too much for my knees to handle. Imagine going somewhere if you can't straight and tell me how that feels.... And walking in braces, big bulky metal braces was jus painful. I've always had flat feet and as I walked about with two metal rods locked in my shoes I developed pretty severe blisters. Cremes, band aids nothing seemed to work. Locking the braces straight was a painful procedure too, as we had to fight my tensions that every year grew stronger. Drawing the step from the hipp to lift the leg wasn't easy, wasn't graceful. Took a lot of energy and because of how complicated balancing my body weight in something like this, wasn't a quick way to get around. Ten rounds around my apartment and I was done! Sometimes in order to make things more interesting we'd go outside, go on a mission. Like, get to a video rental store down the street. Suffice to say, I never made it. And then releasing the lock on the brace after I was done for the day. A great relief as my legs went numb.

 A year or two ago I had to go up a few steps to see my friend's artshow. Dragging my feet   I ruined my favorite shoes as my friends assisted me under my arm. I couldn't wait to get back in the chair. What can I say, walking just isn't my thing.

Friday, August 29, 2014

Left behind

As I think about what aspects of being in a wheelchair really get to me sometimes I have to mention my ultimate nemesis: flights of stairs. It's not that I want to be able to run up them one day, but that they often me feel isolated and unwelcome with their mocking presence. They're just there, I can't  get around them and there's nothing I can do. When I was a child my mother would me in front of a store in my stroller or later - wheelchair- as she went in to grab a few items. A lot of my childhood seems to involve me waiting outside for someone to be done what they were doing alone with my thoughts. Stores and public places in both Warsaw and Budapest had stairs everywhere. If it wasn't a full flight, an elegant three steps would lead you up to the door. My mother often struggled to pull me up there, but every time she did that, she had quite a work out. Having me walk up a floor by supporting me under my arm was in turn as exhausting exercise for me. A lot of times, if my mom thought she'd be done somewhere quickly, she would think it's really not worth it to get me up there. "I'll be back in five minutes"- it's probably the most repeated phrase of my childhood,  meaning again that I would have to wait outside.  And the thing is a  lot of times I wanted to go, I wanted to see, I wanted to experience something. Yes, you understand why you must stay, because you understand your limitations and reality clearly. But it doesn't make you feel that much better. You only learn to come to terms with  the best you can. Luckily I was a child with a big imagination, so the breeze on my face or the sound of the streetcar would inspire a journey inside of my mind.  Often all I would get is a comment on how I would not have liked it there, that there was nothing to see or that the selection was poor and it was actually a waste of time. But all that mattered to me is that once again I was left behind. In elementary school, when something happened and my classmates had to leave the room unexpectedly for some reason (because there was a show or an assembly) and the teacher felt it was too much of a hassle to move me, she'd make a friend or two behind so I wouldn't be there alone. It felt like assigned to them. They wanted to be there as little as I did, as we spend our time playing "Hangman" or Wheel of Fortune". There's a place in Gainesville called the Grog House. My friends seem to like it. I've never been. I'll  never get to go. There's an impressive flight of stairs, about half a floor's worth leading to the door. And I have to say that I'm bothered that there are places that  can't easily get to myself. To me it's more than just physically getting somewhere. It's the laughs and the joy my friends have that I don't get to be a part of.  And it's all of the things I don't get to go, see and experience. Sure, we can all go to places that are more wheelchair friendly, but having to compromise to accommodate feels a bit like leaving a friend behind so I don't feel lonely. And yes, when there's a place that I can't get to I feel unwelcome and unwanted there. I guess you could say that accessibility to me is in general more about how I feel about the world including me and me in it than physically getting places. That's why my foundation's motto is "Empowerment through inclusion".The better the world receives you, the better you feel about yourself, the more you can do. And as far as being left behind goes. It sometimes still happens. I could be at a venue that has a pool table or something else going on on an upper floor with no elevator access. I often hear: we'll only check it out for a minute, and for the next twenty I'm alone in a crowded room full of strangers. As much as I'd want to see what my friends are up to I can't fly over a flight of stairs. Thankfully I'm smart enough to find things and people to entertain me.

Tuesday, August 26, 2014

Too high to reach.

What are some of the obstacles you experience in everyday life? What is the most annoying thing about being in a wheelchair? As we try to prepare one hundred questions that serve as building blocks of our "Tell us your story campaign interviews I wonder how I'd answer these. The answers may surprise you. For me it's not about running or walking, jumping and dancing. It's that many things are literally beyond my reach. Sure, I can ask for help when I  need to grab something from the top shelf and I don't mind doing so. But finding a person to ask is often a challenge. Figuring out how to get their attention is another thing. And from time to time their response surprises me. Consider this story from last Saturday  night. When a package larger than the envelope arrives here, my postman puts it in one of the larger locked storage boxes and puts the key in the mailbox. He knows that I'm in a wheelchair so he tries to put in one of the units within my reach. Imagine my surprise when I find that my item is for some reason in the very top one. No amount of stretching would work. I waited for a bit,  thinking people would be coming back from bars soon. And when I heard voices I'd stop whoever was there to help me. Yes, I could have just go home and ask a friend another day. What can I say? Putting things off like that knowing there are things waiting for me that I can't get to makes me feel really defeated. I really wanted it that night. I saw a group of girls walking by and I asked one if she could help me open that lock. After all we were neighbors. After all it would not even take a minute. She shook her head and said, No, Sorry. See, the worst thing about asking people for help is not that you feel like you can't do things for yourself. Is the fact that they may say no. They have the power to ruin your day. To make you feel embarrassed to have asked in the first place and a bit angry at both yourself and them. Perhaps she was a little drunk to understand what I was saying. Maybe she thought I was asking for change. For a while after I replayed the exchange in my head, thinking what exactly happened. Some 20 minutes later another neighbor was walking down the stairs leaving the complex and I asked again. He had no problems helping although we never had before. Sometimes I wish I could stand up only to reach the things I need. When I was waiting for someone to walk pass our mailbox I was getting frustrated with myself, my mailman, the mailbox for being so mockingly high. For a minute there I even thought about figuring out how to use my Peto training to climb my wheelchair and kneel on it.  When I go shopping, the brand of yogurt I like is always on the higher shelf. Quite frankly most people there look like  they don't want to be bothered. Trust me, as soon as they come up with a wheelchair that can lift the sit up a few inches I'll be getting one. Perhaps then I could have an eye level interaction with people without them looking down on me. Literally and figuratively, perhaps.