Saturday, April 25, 2015

On Daredevil and disabilities

I wanted to dedicate a few paragraphs to a new show from Marvel/ABC Studios that has been subject to a bit of a controversy recently.  I'm sure their corporate parent, Disney is not very happy with some of the headlines "Daredevil", an original series  now available on Netflix has been making recently. As the show is centered around a character that lost his sight a a child, many news outlets picked up on the fact that the blind or visually impaired subscribers can't really enjoy it. The streaming service has offered the program without a visual description track. It does come across as strange if not ironic that while featuring this really empowering and positive presentation of a hero in some ways severely limited (which he compensates with his other super sharpened senses and incredible martial arts skills) Netflix chooses to alienate what could be some of the show's biggest advocates. I'm also impressed with the media for taking a second to notice and bring out issues relating to portrayal of an important segment of the disability community and what it means for it to have someone it can relate to. I'm not even insisting that the actor playing the main role should himself be blind. I'm only on Episode 8 of the 13-piece season, but the title character appears to be some type of superhero- with the elaborate choreographed fight sequences I don't think it would be feasible to pull off. Otherwise, the show has been getting acclaim pretty much across the board, with how it turned a comic book into a very dark and gritty, adult type of entertainment. I did find it difficult to binge watch, given the extremely violent, bloody graphic content, that is not intended to be cartoonish, but realistic and literal, but I do applaud Disney for branching out of the classic TV format into a 13-episode streaming event when they felt too constrained for that type of storytelling. But that's not the point I'm trying to make. I'm very impressed with their portrayal of the title character. To put it in colloquial terms:" He's a badass". Yes, most of of plays like a fairytale: He can beat up a group of gangsters all by himself, he has senses that are borderline super powers and I'm pretty sure I saw him bring a man from the dead. He's cool, he's confident, he stands up for himself and for others. Many people will be so amazed with what he is and how he is that they say:"He's awesome. I want to be just like him". Not because of his condition and not in spite of it, but because of how he is as a whole. I've written about it before. I think it's crucial to have independent and able people with disabilities whatever they may be present in popular culture to change people's perception. Yes, it starts with an exaggerated portrayal, a comic book superhero fiction, but who knows when it will spill over and what will come next. I have always said: acceptance of other minorities came when we started saying them as a normal part of our media landscape. Popular culture is a big part of bringing both respect and empathy. I was enthusiastic about the Netflix show because although I'm not a big fan of comic books or Marvel content- I recognized what it was trying to do and how it took me by surprise as to what it made me feel. And I like it because what's it's doing as it sneaks up on you is exactly what I want to do for other disabilities at the Florida Disabilities Access and Awareness Foundation. Over the last few months we were talking about video games and apps, books  reporting and storytelling all designed to bring out "Badass" people with disabilities, with mobility issues and in wheelchair in both real world and fiction all to make the audience say, these people are so cool. Marvel managed to get their point accross in 13 hours. We are still on our way. So visit us, join us and support us and let's make something "cool" together http://fdaaf.org

Tuesday, April 21, 2015

Two wars

"There are two wars that we fight every day"- a friend in a wheelchair told me once- "One is the battle with our own body that doesn't always cooperate with you. The other is facing all the other people in the outside world". I think he was right. As difficult it may be to have a physical limitation, dealing with what everyone else thinks, projects and assumes often and in many ways is much worse. I've been dealing with Cerebral Palsy for 35 years. I got in covered. Nobody knows more about what it's like to be me than me, I think- with my three law degrees and projects constantly developing in the background I've been doing a pretty good job. That doesn't mean of course that being in this body isn't trying sometimes. We all have those days when it's hard to get out of the bed in the morning. And when it takes some effort to actually and literally lift yourself up in the morning. But I like to think I'm making it day by day. And there are times when I think I'm pretty fly for doing what I'm doing and getting out the door. And then there are other people. And they do often get me down I know I shouldn't let them. Because if I manage my disability and I make it work, why should they have an opinion? I guess that's why I started Florida Disability Access and Awareness Foundation- to help with that other war, to take it out of the equation.  The war on ignorance, prejudice and prejudice. Because life is complicated enough without having to deal with all that added stuff, that have nothing to do with you, you know? Today we have launched a page for the photo app we are fundraising for. There are programs and websites that deal with wheelchair and access already, so we wanted to try a bit of a different angle. Our Creative Director called in "Instagram for Disabilities" or "Selfies for greater good". What if the general public is much of a target of this as are people with disabilities? What if the point is to get them to care and notice, so then they snap a picture of a wheelchair problem area. What if we made a game. With challenges and prizes, with wheelchairs, disability, accessibility, all those noble concepts in the back of everyone's mind while they're doing it? Would we be able to get people to pay attention and to care, especially since we're not asking for more than what it takes to snap a picture? Maybe we can change the way people think. Empathy and education while having fun. What a novel concept! But in order to get there we need our project to launch. So please visit:

http://fdaaf.org/accessapp

and read about it some more. Consider donating and helping us spread the word! I think the end result could be exciting and unique, but it needs community support. If you have questions, please email me at rstrzalkowski@FDAAF.ORG

Friday, April 17, 2015

Picking through my blogs for a coherent message

I haven't had the need to go through  my writings  since Andrew Sutton put together a book out of 33 of my earlier posts. It was impressive to see my words on paper coming together to get a message across. The specific texts were then picked for a reason. There was a key that Andrew used for his selection, it needed to have a certain flow and tell a story. His interest and focus was on my childhood experiences, my time in Hungary and Conductive Education- and how all these things tied into my adult life and my work at the time for the Jordan Klausner Foundation. The point is- he did a good job making it work as if it was written for that purpose. With an angle of course and a bias of sorts if you will, but still- it was impressively coherent. There was of course more to my story as it continues to be and my postings covered a wide range of topics, that seem central to me and my life as I saw it, but where outside of his interest. Recently I had to sit down and peruse through my years and years of blogging as if I was compiling a follow up to the "Lawyer On Wheels", a new chapter, but with a different key in mind. My nonprofit approached me to select texts for the FDAAF's website that would serve as a "President's Blog" section of sorts. Yes, part of the logic behind it was that we were low on content and we needed to build a base of disability themed text. But, as Florida Disability Access and Awareness Foundation is my brainchild, who better than me to explain my logic  behind putting it together? The charity was formed in response to some of the things I was going through as a person in a wheelchair, as somebody in a wheelchair and a man with Cerebral Palsy. You'll see traces of what formed that vision in my posts from that time. The point is, we're not putting them on there as a filler- it's all the experiences that made me think, that upset me, that angered and disappointed me, that took me from "somebody should do something" to "I should help make the change I want to see". The deep understanding that we have a disability awareness and image problem come through most of those stories as if I've written them today. They do reflect a certain state of mind and a certain time, maybe I would write some of them differently, but for the most part they don't age. They're not memoirs or diaries, they state a problem. A wheelchair against the word, disability versus a flight of stairs and man faced with ignorance and indifference. Just because I don't write about places that have narrow doors or inaccessible restrooms every day doesn't mean that somebody went in and remodeled those places over night. Just because I don't record every instance of a hateful word, people trying to give me money on the street or young girls hanging out at the handicapped bathroom doesn't mean that it doesn't happen all the time. I would just get more upset and my blog would get repetitive or boring. For a while, when a similar story happened to me as the one I wrote about before, I just twitted that blog link again. But it a way for my own sanity I stopped letting those things get to me that much. I chose stories that talk about accessibility issues around town. All the instances when I have issues getting somewhere and I still would. Some stories of independent living. What it's like to be me while we gather stories of other people and what it's like to be them. What people think of me as they see me and what I think about them and how FDAAF came to be and what it means, what my hopes and dreams are. In a way I hope you can read it as a book. Seeing those texts back to back  I notice a story and an evolution. Not only does it capture one person's state of mind, but serves an introduction to a discussion about a problem. A sketch of what the problem is as I found it, how I see it, how others do and how we want to use FDAAF to help address it as we're about to launch our first big project in a few days. The idea behind this selection is to tackle issues of accessibility, empathy and inclusion with the texts that are most relevant today. Please visit http://fdaaf.org/category/ralphs-blog/

Monday, April 13, 2015

Old friends

Here's something that never happened before. I managed to break not one but two city buses in a day. And I wasn't even of the first one! The ramp just wouldn't spring out. The driver tried and tried again and even shut the whole vehicle down but it appeared stuck. He even tried lifting it with his hands but he didn't have a good grasp on leverage. In reality you can get it out manually, and that's the one advantage it has over lifts, but you need to use a specialized tool that gets in there like a crowbar. And guess what-  it was the last run of the day. Of course it was. It always is when I need to use it. But I wasn't complaining- the transit supervisor came to pick me up in his van- that comes with a manually folding ramp and some room to strap down a wheelchair in the back. RTS is good like that and I know that if something happens, they'll take care of me, I got there much quicker than on the regular bus and in style. And the supervisor knew me well. He said that as soon as he heard in on the radio he assumed it must had been me.  With his roof lights on coming to pick me up certainly  It was one of the older bus drivers who I don't get to see a lot anymore but  ten, eleven years ago he was regularly assigned to the route that took me to law school and back. Now every time I see him is because something like this happened- and it still does from time to time. We reminisced about how that route had a really old school or just plain old buses on it. They had a lift, stored vertically, looking like a drawbridge that came with a remote, a door that unlocked from the outside and a very steep ramp in that I could barely take on my own. He reminded me how he pulled his back or injured his knee when helping me get in. This was our joint struggle for months, night after night. I believe he campaigned to have a different type of a bus assigned to the routes that I frequently used. Some drivers struggled as much as he did on the Bus 34, others couldn't even turn the key or even refused to take me. "We've never had any problems"- he pointed out and I agreed. I liked riding with him. Eventually his campaign led to RTS replacing buses on the 34- at first making sure that at lest one was "normal". Now there are no Orion buses in the city fleet at all, but back in the day it was a big deal. And it was quite a struggle for me to pull up myself onto that thing. And I have to say that it's always a great experience to see a driver who remembers me from back in the day. When I knew all my "regulars" by name. Now there's just too many to remember. When I was just starting out. Like we've been to a war together. Like we're old friends.


I was going to watch a movie on campus that day so I was happy that I wasn't left behind. It must have been my lucky day though, because as I boarded my bus home, the lift properly stowed and I'm waiting strapped down to go home, the door wouldn't close. We've spent a few minutes figuring out, girls in the back to involved with their phones to notice. What finally helped was restarting the entire system after shutting it down. The door closed on its own. Of course as soon as he dropped me off it happened again. Well, youb can't pin that one on me!

Friday, April 10, 2015

English Language

It's been a busy week or two and it had nothing to do with the holidays. In fact, it flew buy so quickly that I practically forgot it was Easter.  A work weekend and there was something we needed to have finished fairly quickly. That Sunday I and a team member of mine where up until all hours working on a copy we were about to send out. Between the edits and the back and forth it was 2 am Monday already. I'm working on three different projects at once. Three different breakout ideas brought to me by three different boardmembers. It's exciting that things finally begin to happen, and I'm not really allowed to speak about them until we're ready, but I have been feeling lately like I'm being pulled in three different directions. And I had to make some tough calls. But that's not the story that I wanted to make today. Between all the deciding, all the scheduling, all the brainstorming and all the figuring out I have been doing quite a bit of fairly rushed writing. I remember typing up "dreamt". And imagine my confusion when my word processor highlighted it as an error. In fact, the Blogger text input field in my Chrome browser has it highlighted right now. Have we gotten rid of "dreamt" as a word all together? Am I supposed to write "dreamed" now? I simply refuse to let that happen. My high school English teacher tortured us plenty with irregular verbs until we got all of them right. And I'm supposed to now let it go? If I- a foreigner- can memorize a number of past tense forms of a language that is not my first, not my second, but my forth, so can a bunch of Americans. Here's a funny story. As I learnt English not in a classroom, not from any written sources but from watching TV- I struggled a bit a first with grammar. Well I didn't really "struggle", but I lacked that foundation and I really needed to get it. I understood some things about the sentence structure and words used instinctively, much like a child learns a language organically. But I didn't get the theory, the rules, the forms- because speaking English came to me naturally- while my mom for example, when she needs to translate something into English tries to figure out the timeline first to figure out what tenses to use. I remember that when I first started writing English I wouldn't commonly misspell words like "don't" as "do'nt" as the apostrophe in my mind separated the two words. I was in advanced English class but I had no background in English writing. Our teacher made us keep a journal - and made us turn it stories from our life every week and it help. Then she would reply- not simply comment, give us feedback, but reply, keeping an intimate dialogue of sorts going. And then, the irregular verbs came. One day I come back to school after being off for a few days- I think I had a cold- and suddenly she makes us take out a piece of paper and write past tenses to the verbs of her choosing. Ten. If you got one wrong you get a failing grade have to do it again. And the funny thing is- as you know- some do have legitimate regular forms that often have different meanings. So while I wrote "hanged", she was looking for "hung". I remember how unfair and unreasonable we all felt she was. Some of us ended up having to do it four, five, six times. We've even wrote on the back of the same page to save paper- that's how confident we were we'd have to do it again. So yes, if I had to do it, you can do it too. "Dreamed" and "dreamed" are different words for a reason, let's not get rid of them out of sheer laziness. On the other hand I see language as progressive and organic. Over the  week I also edited some writings from our new volunteer in Australia. I smiled as his "organise" became our "organize", his "neighbourhood" turned into "neighborhood". I often write "colour" in place of "color" and "theatre" for theater, if only to confuse people, but I generally think it looks better.

Monday, April 6, 2015

Are the hotel beds getting higher?

You may think it's funny. I dread getting on a bed whenever I stay at a hotel. My knees are spastic making me much lower when I stand, so I can't simply sit down on it or easily transfer from a wheelchair. Every time I try it becomes quite an exercise. Ten years ago I would just throw myself on it and crawl up  on while grabbing onto a mattress with my fists and trying find something I can leverage my feet against and push  against. Recently I discovered that I struggle much more and I wondered if it was the spasticity in my knees that increased making me "smaller" or have the hotel beds actually gotten higher. I figured it must be a combination of both. I don't stay at hotels more often than once every few years so I can't really compare. My bed at home was always much lower and those at hotels were always somewhat high. Even at the so called wheelchair accessible rooms the one thing that was always standard in height - which is strange given that it has things like a roll in shower. And the question becomes how do people transfer in and out of these things. And I know that many hotels you can ask for an "accessible" box frame and mattress, but shouldn't they be offered by default at the "wheelchair friendly" rooms at least? Over the last year or so I've stayed with friends in two-bed rooms. Luckily they were there, so they could help me. Either by grabbing my legs as I climb it or by pulling me by my hands from the other side of the bed. If I'm by myself I wait until my muscles are fully relaxed before I try to stand and I put my shoes on to give myself that extra inch. With multiple tries, getting the right angle I'm usually able to get it, but getting a good night sleep should not be like training for the Olympics. Either way, with the mattress towering over a wheelchair I often wondered- how do people manage? Not everybody is able to stand a bit like I am. And what made me think about it again is a lunch I had with a friend of mine in a wheelchair. He told me that over the last ten years the hotel beds actually "got taller" making it much harder for everyone with mobility issue. He then asked a good question: Why? How is this safe for anyone? If you fall out of your bed at night that's a bit of a way to go. You get easily get injured. And what's the benefit? To protect us from critters that live on the floor? Maybe it's so the mattress is more plushy, but then, why does the box spring needs to be so high? One of these days I'll ask hotel industry experts about it, maybe they can give me a good reason for it.

Friday, April 3, 2015

Disability: It could happen to you

I was having lunch with a friend in a wheelchair not long ago. The place was crowded with people eating, drinking, talking, focused on whatever they were doing at the time,  far far away in their own little worlds. Suddenly he took a long look around the room and said, "How many of them would know what to do if they were struck with disability? They'd be lost". I think that was a fair point. Not to say look at us, we're so amazing, but we do have a lifetime of practice getting our bodies to work and bend to our will.  It does take a certain amount of skill not to mention determination to be as mobile as we both our today. It doesn't of course imply that our struggle is in any shape of form more unique or noteworthy than what other people deal with (and everybody deals with something), but I will give myself credit for "being me" and doing it well. As the discussion suddenly took a turn for the more gloomy and reflective, I thought of something else: How many of these people will be faced with a disability later in life and don't even know it. And it's not as simple as having a medical condition  or being of struggling health, but all those other things that having a disability involves. How people look at you. How you have a hard time getting around or even getting through the door. How there are sidewalk and ramps and stairs and wheelchair accessible bathrooms. How you may not worry about any of this today, but later in life it can become all so important. It's a bit different than with being part of most other minority group. You either are or aren't of particular race or gender. You either are born gay or straight. But with disability you can't ever say, this struggle is not about me and never will be, as our mobility decreases with age, it something we all may face. And while you  can think for example:" I can't relate to women's equality issues because I'm a man", or "I'm not feeling African-American struggles because I'm not black", think about what the following statistic means to you. According to the US Census Bureau " People in the oldest age group — 80 and older — were about eight times more likely to have a disability as those in the youngest group — younger than 15 (71 percent compared with 8 percent). The probability of having a severe disability is only one in 20 for those 15 to 24 while it is one in four for those 65 to 69. 71%! 1 in 4! I wouldn't wish disability on anybody of course and- as much as I love my life- it comes with its own set of challenges. But things change. Mobility changes. You can never say with any degree of certainty that this particular struggle will never be about you. If anything, you're more than likely to be affected by it in some shape of form. If not you directly- as we all age- than through a friend or a relative. That's why I think proper accessibility, empathy and respect for people with disabilities should be on everybody's mind- not only because considerate people should care about empowerment and inclusion, but also because you never know- one day you may be faced with those issues yourself. And wouldn't it feel good to know that somebody has your back and there are people who fight to have those resources ready. That's why I encourage people to familiarize themselves with the mission of a nonprofit I started, Florida Disability Access and Awareness Foundation and how our programs use modern media, technology and education to make a difference. Spread the word, see how you can help and donate if you can, because there's a lot left to do and we're just getting started. Visit http://fdaaf.org