Disability mean

When a friend of mine joined me for dinner last week he had a story to tell. There's a young woman  in a wheelchair that frequents the same areas of downtown Gainesville that I do. I don't know her name, I don't know her age- and we always see her surrounded in a group of hipster.  My friends always thought I should introduce myself to her as if- wheelchair aside - we have anything in common. The only interaction we have is that awkward moment when one of us tries to get by an the other one in the way. -I think she's really cool- that one particular friend said to me one night.- I will say Hi to her. -If you want to I think you should I said thinking that it might be a little weird when  an older   man approaches her to say hello, but then again, this is Gainesville. Strangers interact here and become friends all the time, and my friend needles to say likes younger girls. As we were having dinner a few nights ago the young woman was eating there too, so I decided to ask my friend if he ever came to her. It's a weird story- he said and he begun to tell me. I could've guessed something was up- we were sited by the door and the restrooms and she ended up rolling by our table quite a few times uncomfortably, avoiding eye contact and never saying a word. - She's mean- my friend said. I tried coming up to her, but she said "Don't talk to me" when I tried to say something. For a second I tried to think about what was going through her mind. Maybe she thought my friend thought that he pitted her and tried to have one of those weird conversations "with a cripple" that I'm all too familiar with from Warsaw. Maybe she had a bad day. Maybe she thought my friend was weird and she didn't want to talk to a stranger. I do it all the time and that's how I meet some of the most interesting people. I'm just never afraid to say something funny to the table next to me. But that's me. We're all different. Just because she's in a wheelchair doesn't mean she has a touching story she needs to share and a heart on her sleeve. We are not looking for friends, nor do we need saving. Popular culture often presented characters in wheelchairs as bitter, miserable or shy- in need to be reached, have their walls and defenses broken. But maybe she's just mean. Maybe she's an asshole. People in wheelchairs are after all just like everybody else. We could nice, outgoing, introverted, extroverted, kind, superior, mean spirited, bitter, shy or fun. The chair has nothing to do with how we are as human beings. I often wonder if people make the same type of assumptions when they see a wheelchair as to what kind of person the one in it is as they do  based on glasses and accessories. My friend saw her interact with her group and he wanted to share in the blast they were having. She may have thought his intent was different. Either way I hope he didn't conclude that she's mean because of the wheelchair or her life that he knows nothing. She has the right to be mean the same way a able-bodied  woman would. Trust me that happened to my friend quite a few times before.

Impossible!

When I moved into my new apartment one problem became apparent: the bathroom door opened inward meaning I couldn't get through with my wheelchair or put my washer and dryer combo behind it like I did in my old place. Solution, I figured, would be to flip the door and the hinges so it would open into the hall, like in the unit I moved from. The maintenance technicians were nt helpful at all and offered to simply take the door out permanently. My friend Victor also decided it needs to go. Flipping it, he announced would be "impossible" and I should consider putting a nice shower curtain or some beads  instead. That simply would not have worked. I don't mind the door either way when I'm by myself most of the time. But when I have friends over they need they privacy when using the restroom and feel comfortable. And while all the male "experts" jointly agreed that it simply couldn't be done, my friend Verity one afternoon while arranging my new apartment just grabbed a drill and took the door down. Then, when the cable guy was setting up my service in my livingroom she begun to drill holes for the hinges. The installer came handy because he told us how the door actually needs to go. And she accomplished in 15 minutes what others were debating on for a week. Because she just went and did it. Later, an appropriate picture with her doing the impossible and all the naysayers tag ended up on Facebook. If I just went with what they did  say I would have never known would I? You never know until you try. That story for some reason made me think of Conductive Education and all the recent negative articles from people who never even seen it links to which Andrew Sutton posted few weeks ago. CE is of course the Cerebral Palsy approach invented in Hungary that I credit for my mobility and independence. One of the texts concluded that because there isn't any conclusive research, CE must be giving parents "false hope". Absence of evidence is not evidence of absence. Those who read my blog on the subject know that I've been incredibly critical of the Peto Institute for doing this for many decades and not having a vast body of research. But that doesn't mean that it's ineffective. Why don't we ask the parents who saw their children walk for the first time if their hope is "false" and if they consider it a waste of time. Besides- I think that hope is the one crucial element in bringing up a child with disability. Focus, empowerment, encouragement, positivity. Hope is of course not certainty. But I wonder what would the critics do if they had a CP child. Nothing because it might not work? You won't know until you try. Quite honestly, if my parents just left me alone, because they won't get their hopes up prematurely I'd be a little spastic ball in the corner. Any rehabilitation method might not bring the results you dream of, but doing nothing is so much worse. That's hopelessness. Even if you don't trust the CE and it's methodology, even if you think that the theories behind it are little dicey, at the basic level of it you have kids exercising. Working their limbs and bodies. How can that be a bad thing. Even if you see it only as a workout, don't you go to the gym four times a week?

Muscular dystrophy

When I was little, my mother would take me for a walk in my MacLaren stroller around the playground right by our apartment building. She would chat with our  neighbor who came down with her son in an identical stroller. As they talked  there was nothing for us to do but to stare at each other and wait until they were ready to go. Back then I didn't know how much older than me he was. Skinny and small you would never guess that he was my brother's age. Seven years gap between us. I don't think I knew what he had back then. My mom told me the story years later.  I believe he collapsed in the first grade. Never got to experience much of the school life as he was diagnosed fairly quickly and from that point on his condition progressed. Throughout the years we would bump into them on our way home. My parents bringing me home from school, them just catching a bit of air and sun in front of their apartment building. This isn't a nice or an easy thing to say, but my parents always used him as example when talking to me about how things always could have been worse and I should be happy that I'm as mobile as I am. Although mother to mother, my mom's heart cried out to her everyday as we saw her son slowly waste away,I know that they were thankful  that I didn't have a progressive condition that would take my life in the end. He passed away at 21. His mother, always hopeful and extremely religious turned to her faith and that allowed her to cope. I always wished I could do more and that image of a boy, of a man trapped in his body is forever vivid in my mind. Imagine my excitement when Muscular Dystrophy  Foundation asked me to get involved with an event of theirs. And picture my disappointment when a few weeks later I had to decline. Getting involved with other disability causes would be amazing. We can change the world together, we can team and network. Their event included having members of the community "locked up" for a day having members of the community buy them out. And I was fine with that. But they wanted me to do one thing I couldn't - fundraise on their behalf. I said- I'm fine donating my time, use me in other ways you can think of, but I have hard enough of a time getting my contacts and friends donating to my foundation without confusing any other cause. This is the make or brake time for FDAAF and if I don't double down on my fundraising efforts, the thing that I'm trying to build, that I dedicate most of my waking moments to will never \materialize. MD is a very worthy cause and I applaud the MDA for taking the issue to the public. You should support it if you can. They were very understanding of my limitations and in fact thanked me for being involved in disability causes in other ways. How could I not be? I'm as much about disability causes as disability causes are all about me. I hope that one day we'll find a way for all of us to work together. I like the idea of creating a unified disability front in Florida.

No internet

For the last week or so I didn't have internet or cable. Have you tried using your cell phone to send out business emails? It's not that fun when you have no other choice. As it turns out that you need to get on line to switch over your utilities and have the cable guy come out. I've discovered the limitations of my tablet when it turned out that some of the order forms were not displaying properly and I had to bring out my 17 inch laptop to get internet and electricity at my new place. My complex gave me two weeks to move. The idea was, that as I rely on other people to help me move we could slowly transfer all my possessions room by room. Bathroom-bathroom, bedroom-bedroom, living room-living room, kitchen kitchen. My friends however thought differently. On the second day all of my old apartment was packed up and in trashbags on my new living room floor. Some of the first things to go was the equipment and cables for the TV and Wifi. We've spent  the next few days finding where all my essentials were and getting things organized. At first, we couldn't even find a toothbrush and we had to get one of our friends  to bring me a dental kid. But this move was a a learning experience as well. Many of the people from my inner circle have promised to come out and help. Moves are hard in general, but they are especially difficult on someone like me as I can't do it myself. These people mysteriously and all of the sudden ended up having to work on the days we were getting together. But others stuck by me and for that I'm grateful. While I love my new bay widow and a bigger bedroom full of sunshine I didn't love the bathroom door that opened inward. A friend just grabbed her drill and flipped the door and hinges. Some of the other tasks of the week included: hanging shelves, putting up the tv, figuring out my washer and dryer and reconstructing the dryer stand. Obviously I wouldn't be  to do it without the people who did it for me. As today is the first day that my internet works again, because although I ordered it last week the closest available date was today, give me a few days to get back to full swing of blogging. The good news? My place is starting to look like a home.

Just park anywhere

Today was going to be about something completely different. In fact, with a move in progress I was thinking I wasn't going to write at all. I have no internet until next week in the new apartment and all my equipment is packed up in boxes and trash bags. But then this happened. I was rolling up to Starbucks just across the street from where I live to meet a friend, when I saw a car parked right by the curb cut on the corner, blocking my access to the sidewalk. I waited for the driver to get out, as it turned out a young blonde woman and I decided to approach her politely. For the future reference, could you not park as close to the wheelchair ramp? I can't get by. -I work here- she replied as if that meant she could park wherever she wanted, without thinking of anyone else. -If you block the curb I can't get on it. And even if you leave me some space but not enough to feel comfortable, you are at risk- If the ramp is to steep and I have no room to maneuver I may end up losing control over my chair and rolling back- it happened before. I wouldn't want to hit your car on scratch it. As the woman saw me struggle to get by her car, she finally decided to move it. At that point I was already upset and prepared to simply wheel down the street,  in the road  to get to the curb cut  on the other end of the sidewalk. She moved her car and although it didn't help much, as it was still sticking out to much for me to get up safely, I'm glad I made her do something. She took her time to get back in to try to reposition her vehicle. Maybe next time she'll think about  how and where she's parking her car. A lot of people think of the curb cut area as a great open space you can, most often temporarily leave your car while you right your errands. Nobody's using it, so  what's the harm, right? And your car fits in there so well, right?? And it's only a few minutes while you get your mocha macchiato. Yes, I heard all the excuses. Next  time you decide to block access, you better hope I'm not there. Trust me- if I am, I you'll get a piece of my mind. And that might  be longer than the 5 minutes you saved not searching for a proper parking spot

Theme parks and my wheelchair

There's a picture of me from when I was about 19. With a terrified look on my face I'm falling down the Splash Mountain waterfall. I didn't know that the wooden boat had grab bars on the both sides for me to hold on to, so I'm reaching out for whatever element that was sticking out in the front. Right behind me, my brother's then fiancée holding on to me so I wouldn't fall out, a bit in the back my cousin, Robert, cool, calm and collected, with a video camera on his arm. The picture is one of the few souvenirs from my first visit to America. I was just accepted to the law program at Warsaw University and as a graduation gift of sorts, my parents sent me with my brother and his girlfriend to go visit my cousin who moved to Las Vegas a few years later. California was just a few hours of a drive away, and we decided the one thing we all needed to do as a family is go to Disneyland. I wouldn't be able to do anything fun if it wasn't for the fact that I had people to help me. And I'm not even talking about attractions marked specifically as not for people with disabilities because I understood them as off limits. I needed help transferring in and out of rides. I can stand and take a few steps, but someone has to assist me with an arm to lean on. There practically was no heavy lifting involved but I could not have done it myself. The theme park workers may not  and are instructed not to help, which is understandable as it can turn into a big liability issue had something happened. An idea not too far fetched, given that these theme parks get sued for something every now and again. I only wish that an operation as big as Disney, given its prestige and not to mention, price of admission, had qualified staff, like nurses- to assist patrons with special needs to help them get most out of what many consider out of the lifetime experience. How about carts you can secure a wheelchair user in? I was fine with all of this transfer in and out business, given my back then pretty high mobility level, but after a while even I was tired. Back then, wheelchair users didn't have to wait in lines, something I believe Disney had since got rid off, but for my entire family then it was the benefit of having wheelchair around. At least they gave us that. We didn't have to wait. Six years later I  was in America again. My Florida school adventure was about to start in a month, so my parents and I decided to go to Universal theme park. When we got there, the multiple day pass we bought at our hotel turned out to be already used. The park decided to make it up to us by giving us more tickets to use at a later day. This allowed me to treat my new roommate to a day of rollercoasters. But the experience was pretty much the same-  transferring in, transferring out, I would have not been able to do anything without my parents there. We were allowed to enter rides  without waiting, but at the paste we were going through things, half way through the day, we were out of new things to explore. At the time I was pretty much used to someone helping me to get around, so I didn't think much about it. If anything, I was just grateful to be there. But now I think about it more. I wonder: what can be done to make the theme park experience more wheelchair friendly? What do other patrons with disability do? What both horror stories and the positive feedback must be out there to share and learn from?

The great move

You know the drill- lower the shelves in the closet, make the chains that turn on the lights and fans longer. If needed - replace the toilet to make it lower. Build something to give me more storage space in the kitchen. Move the AC control panel so I can reach it. Put some grab bars around the bathtub. Yes, ladies and gentlemen- I am moving. For the last week or so the maintenance staff at my apartment complex have been running like crazy to give me the same kind of experience I had at my old unit- only better. One thing I didn't count on- the lay out of my current place is a mirror image of where I'm going to live next. It will take some getting used to, I need to figure out some new routines of where to pull and where to push to have it done. I know it's something fully able-bodied persons may not understand, but since my right side is more afflicted than my left side- it's very important to me where things are as I approach them.For example- in my current apartment my toilet is in between a tall sink cabinet on the left and a bathtub that is much lower on the right. As much as I rather pulling up than leaning against something I lean on the tub  with my right hand with my left hand on the toilet sit, I stand up, make a switch so that my left hand ends up grabbing the bathtub as sit down. I would not be able to guide my body weight onto  the sit with my right hand there. For people who can walk and have no better or worse side to speak of or need to lean on objects for balance this makes no difference. All that matters is that the bathroom has a sink, a bathtub and I toilet. How they're set up and oriented makes absolutely no difference. Well it does to me. I have to have things set up so it caters to my stronger side for things requiring manipulation, while my other side is good for leaning and pulling. I wasn't too fortunate with the apartment I have now- since the bathtub is lower than the bathtub but not too much and I'm leaning instead of pulling up getting myself to sit on  it, to stand just high enough to get higher than a toilet sit level was often tricky.Ideally I would need something higher to lean on with my right hand - like a grab bar that comes out of the floor and towers over  both the bathtub and the toilet. We were even thinking about putting something between the two as the maintenance people were looking over the things that I have and the things that I would need. The last I saw them taking measures they were meant to see if they can do something about that in my new one. I guess they couldn't have, because they do anything. My knees are spastic so although I can stand for a bit, as they are bent all the time I'm very low when I do. Here's a bit of a good news. As the new apartment is a mirror image of the old one, using the bathroom which now be much easier and safer. The cabinet that is build around the sink will now be on the right, for me to rest my arm on as I stand up. I gives me something sturdy and solid to transfer my body weight to and I pull up instead of leaning down on to stand. I have one more week to complete the move. The complex wanted to give me enough time to get it done without stress. My cleaning lady is coming over Monday to remove any sign of me ever living there but I have one more week. One of the praise benefits of my new place is the Victorian-style bay window that expands the bedroom space by about a third. It should give me so much more light and room for work. Maybe I'll be happier there.