Friday, May 22, 2015

The Garbage Bag

When I first moved to my apartment complex I wasn't sure if it was the  most practical place to be for someone in a wheelchair. The Victorian windows were nice and you couldn't deny that it was both charming and quiet as well as close to everything Downtown. At the same before I moved in I had to go around the complex to get to the only path in and out if I didn't want to try my luck going down a few steps or falling from a sidewalk. It was surrounded by cobblestone streets my wheels would only get stuck on. Even to get to the trash you'd have to get over a big step. But- the management was very accommodating and eager to win me over.  That first week they build me a new ramp, right by my unit at the time- later they've put in a concrete path across the grass courtyard - and they offered to have one of the maintenance techs pick up the garbage bag from my door if I left it out early in the morning. No big deal, right? Until it starts to be. I switched my units twice since then- from a studio to a more spacious one bedroom and then to a bigger bedroom with what they call a bay window and what feels a bit like a fishbowl and gives you much more light. Since then, property managers changed a few times and the maintenance team had seen an even greater rotation. Not all of them knew and remembered to check if there was a trash bag waiting by my door. When I renewed my lease a few months ago it was one of the main issues I brought up with the property manager. I said I wasn't sure if I still wanted to be there, but that one of the selling points for me was that I had someone there that would take my trash, change my airfilter and light bulbs, things that tenants do themselves but are difficult for me to do for obvious reasons. I also pointed out that since I switched my unit the trash pick up stopped. It was possibly due to the fact my current apartment  might not be as visible from the outside, it has a little hallway of sorts and the door is the last one on the floor and a bit to the inside of the building. We talked, I signed on and the problem disappeared. And yes I had a visiting friend pick up my trash a few times as well. Until this week.  On Sunday evening I left the bag like I usually would. I was quite surprised when I saw it again Monday morning. It was a pretty big bag to navigate around as I was cleaning my apartment - that's why I couldn't really grab it myself- but I didn't really think of it then. Maybe they forgot or didn't have time to get to it. I was more surprised when I saw it again Tuesday morning. At some point I emailed my property manager just to remind her. Turns out she didn't manage my property anymore. Someone I'e never met and who never heard of me replaced her. Having to deal with this suddenly became stressful, so I called one of my friends asking if he could pick it up. He said he would on the way from the bar, but then didn't. With the bad news from home about my grandmother's health and everybody's bracing for the worst and my dad'd follow up heart surgery I really didn't need to deal with figuring out how to deal with this. Wednesday morning the bag is still there, my friend forgot. I'm imagining myself trying to hold it with one hand and wheeling myself wit the other. I don't know if I can get across the street to the trash cam one one side of my complex or if I can roll up the ramps to get to the one on the other if I can't use both hands and have to stop mid way to pull the generously loaded bag behind me. Had I known I would have divided it up or used the small plastic shopping bags I can hang from the back of my chair. The Memorial Day Weekend was coming. Most of my friends are out of town, no one I can really ask for help  I'm worried about home and my mom and on top of it all this situation is making me feel pretty worthless. Like one garbage bag is derailing my independence. It was still there Wednesday night. I said to myself I will deal with it on Thursday. If I walked I'd just grab it and go, but all of a sudden this became a big production. And I did feel abandoned and forgotten with all of this in the process. A friend I asked for help before texted "Sorry" and I still had a garbage bag to deal with- I never anticipated it would become an issue. That's the thing about being in a wheelchair I guess - all those small things you never sweat about if you walk can trip you up. Luckily somebody picked it up on Thursday. I don't know who and when. Maybe the ex manager passed the word on. All I know is when I opened the door Thursday morning, the dreaded bag wasn't there. And that's all I wanted.

Sunday, May 17, 2015

Younger: Age and technology.

When my mother reentered the job market twenty years ago, in her forties- she didn't know how to use a computer. It was up to me to teach her as she was exploring a strange and unfamiliar territory. It wasn't something intuitive and a thing she could figure out on her own as it was for me. We've had a computer in our house since I can remember. First it was the ZX Spectrum borrowed from my uncle's work (that if I remember correctly he didn't know how to do much with either) then the "small" followed by the "big" Atari (130 XE and 1040ST FM) that my brother begged for and got. The PC arrived  at our desk in 1992 or 93. My parents knew it was important, saw my brother's passion and recognized that one day it would pay his bills somehow. It was at a time when some other family members thought it was an expensive toy. They however never had interest in it, how it work and what it did. My mom struggled at first bringing herself up to speed in the new, computerized world, kept a notebook at first with a detailed step by step instructions of how to do things. As an accountant she needed to know all these things. I'd say it was even more of a shock for my dad who was always good with building and fixing things- just never got into the whole computer craze. Today both of my parents use computers at home and at work like it's second nature to them (with the occasional Trojan or malware) have tablets and smartphones, I don't even know how and when that happened-  and you can't not be impressed with the human capacity for learning. Bottom line: There was a generational gap twenty years ago, but those who wanted to stay in the job market needed to bring themselves  up to speed. A new TV show made me revisit these moments with my mom and it really made me question once again if forty today has to mean out of touch like it was back then. Darren Star the producer behind such hits like "Beverly Hills, 90210", "Sex and The City" and "Melrose Place" launched a new show this season, called "Younger" in which a 40-year old woman in order to pursue a career in marketing ends up pretending she's 26. She ends up landing in an unfamiliar world of Twitter and instagram and selfies and hashtags, because apparently nobody wants to hire a 40- year old "has been". The show is silly and fun. Doesn't have much substance and you can tell early on why it's not on an edgier channel like HBO or at least network TV. It's a romanticized comedy. Oddly enough, despite being only 40, the main character doesn't know how to set up a Twitter account (the actress playing her on the other hand, Sutton Foster has a vast Twitter following) and ends up looking it up in a search engine rather than just reading it up on the site. At the same time she's comfortable with using internet on the go and has some web presence - that they end up deleting in one of the first episodes - and a Facebook.  At least they gave her something that makes her seem as if she hasn't lived under a rock for twenty years but it doesn't really add up. They make her "40", not even 40-something, just plain "40" seem like mid 50's, at least. Both of my parents have better computer skills than she does. I have a few years in me before I hit the big 4-0 myself, my older brother already passed that mark and I can't imagine technology not being so prominently featured in our lives.

 I was on Facebook when it was called "TheFacebook" and you needed to be a student to join. I remember my roommate forwarding me the invitation to my UFL account and me sitting on it for a few months thinking, what a silly name, it will never catch on. Ten years ago I was in my mid 20's- and that's when a lot of the services we use today started to pop up. It's funny- because I think Star's perspective on age and technology is wrong. The internet and software became more intuitive. Press here, click there. My brother and his generation actually knew how things work and how to make your computer do things that you need. When I became interested in the internet, the year was 1994? 95? and the big phone bills started to come in my brother's gift to me where handbooks on Java and HTML. He wanted me to know how to do "stuff" too. Today I feel we're just customers of this image culture.  I remember reading a review of "Sex and The City" once summing it up as "a gay man's fantasy of what it's like to be single woman in Manhattan". And I got what the writer meant. The show felt like a fairly tale, the characters seemed silly, naive and eager. More like 16-year old girls than grown up women of esteem and success. That doesn't mean of course that it wasn't occasionally fun to watch. In similar fashion I confess to having "Younger" on my DVR. In similar fashion I think "Younger" is Star's fantasy on what it's like to be a 40-year old woman reentering the work force. Funny thing- had the show been set twenty years in the past I would have agreed with his portrayal. Maybe he's channeling his own experiences or fear of technology, but I feel today you can't escape the latest trends on the internet and they surround you wherever you go. It's much harder to not know who Kim Kardashian is than to start a Twitter account.

As Foster's character (who has a much older roommate but for some reason that's less exotic than her younger coworkers) navigates the world of modern marketing she encounters a never-ending string of cliches. She obviously has to date a free spirited, 26-yearold tattoo artist who moonlights a musician. All her peers at the office are portrayed as 26-year old airheads with no inhibitions or sense of boundaries. We see them for example selling their used underwear online and posing topless while eating lunch. It feels to me like Star has watched one too many episodes of "Girls", another show that believes itself to be smart social commentary on the state of youth. And I'm sure there will be people who will say "Those characters are just like I am" as they do with "Girls"- the award winning HBO show where characters whine, feel sorry for themselves rand are generally lost in life between rounds of  random superficially shocking things like naked table tennis. But- as someone who lived in a college town for over ten years let me tell you a secret- 26-yearolds are not some exotic breed and from my experience they're pretty much like everyone else. And the technology gap is closing- because it's so easy you don't need to know anything about it, but turn it on. And it tied itself to so many other things we do it's hard to ignore. Younger is a fairytale. And it works as mindless entertainment. We really shouldn't overthink it, because it operates on a three-prong premise: The world is crazy, young people are wild and technology is difficult. As I watch I disagree with all free. Darren Star seems to view technology as a threat. It's the thing that renders you out of date and out of touch. I see it as the main thing that can built bridges, pave over barriers and promote inclusion in the XXI. century. That's why when picking the angle my newly formed nonprofit, FDAAF would take to take on wheelchair accessibility and disability perception we decided on modern media and technology. Our first project is an App. We wanted to build something that people of all mobility levels and ages could use to learn and help each other and to me it starts with your phone. http://fdaaf.org/accessapp/

Thursday, May 14, 2015

Cerebral Palsy past and future.

When I was young, even before we started our adventure with years and years of rehabilitation, a doctor back in Poland apparently told my father that my Cerebral Palsy was on the lighter side, that my prognosis was good and eventually I should be able to walk. I don't know what he based that belief on. It was over thirty years ago. Neurologists back then knew very little about causes and cures for Cerebral Palsy, so how and why would he able to speculate and make any kind of prediction? Not that we know much more today- and the brain- how it regenerates and relearns remains a mystery still. What we do know is that many assumptions and beliefs we've held as far as CP was concerned were not accurate. Modern science apparently suggests for example that most cases develop at some point in the womb and not at birth - which was something taken as a fact for generations. Given that, thirty, forty, fifty years ago the science was simply not there, how can any method, protocol and intervention developed eons  ego withstand the test of time when we begin to realize how little we have known back then and how much we still have to learn.  Perhaps in the early 1980's the doctor wanted to give my father hope so he'd stay on the message and not give up on the countless therapies and approaches that follow. But it had an adverse effect on me. My father would bring up the doctor story every time he felt I wasn't dedicated while doing my exercises or I wasn't progressing fast enough. The doctor said I would walk (again, based on what a hunch?- I have spastic quadriplegia, I'm not sure how anybody can think that that is "light")- and I wasn't walking, so obviously I wasn't doing something right, it must have been my fault.  I've decided to bring it up after noticing a blog from Andrew Sutton where he wonders if the Peto method will ever see brighter days again and why Bobath concept generates much more interest.Those who know me and my writings know that I'm a big supporter of Conductive Education as a method that I feel caused significant improvement through my teens, so I do hope that Conductors will read this text in the proper context. Both Peto and Bobath are very "old school" approaches to Cerebral Palsy. I do think that next big development in the field will not come from a method put together through arbitrarily established set of rules of protocols, but from science. Look at the great work Michele Shusterman and her group is doing to push for CP research in the US , what's effective, what isn't, and what should happen next. It's about time we understood how the brain with Cerebral Palsy works and how to "fix it". I hope for her sake and for all of ours, with the right kind of attention and plenty of funding- we can actually develop treatments and cures.  Peto might be a fascinating figure- but isn't it strange that in the XXI century, in the age of internet and cellphones we still look back at his work in the 1940's and still expect it to be as relevant as it was in the 1980's? Can't we come up with something more updated? Here's another story. When we first started my rehabilitation in the early 1980's therapies based on Bobath with an exercise mat and a big bouncy ball was the first thing I was started on right away. Peto was something we've heard about when I was six. Parents were telling each other about it as if it was the next big thing, a new advanced approach, a crave everybody wanted to be in on and all wanted to try. Bobath was however something everyone started with, what we associated until then with the generic term "rehabilitation". And in many ways today it seems to be everything that Peto is not. Although Bobath is as much under fire according to the majority of RCT's there is at least some research and some data for it. Easily accessible: Google it.  I've recently read that Bobath as a method is evolving to an extent that many practitioners aren't even sure if it's still Bobath or if it's something else now. Conductors on the other hand hold on to the precious teachings of a man that had some success after World War II and has been dead for decades. Bobath claims that parents are part of the process of setting goals for the children, Peto is secretive.  My parents were never allowed on the floor and what they were able to replicate comes from the shreds of what they've seen and what I told them. The reason and methodology about it was never revealed. In full disclosure I must say that the name "Peto" was never brought up when I was a boarder at the Institute. If I was following someone's teaching I was certainly unaware of it. I didn't even know at the time if had anything to do with the program or if he was some communist revolutionist they named it after. Because it didn't matter. It wasn't until many years later when I reentered the Peto world in a different role that I came to notice how celebrated this man is, like a good spirit, Santa Claus or Father Time, kind and patient, loving all children like Walt Disney. A few times since I wondered what he was really like but then I questioned if that even matters.  To its peril, while Bobath feels like a straightforward "method", Peto comes across as a lifestyle at best if not an ideology. I'm extremely optimistic every time I read through the discussions that Michele's team has. It's time we stepped into the future. It's 2015. The role of both Bobbath and Peto and their place in history will be determined by the science of tomorrow. And it might be that this place is just that- history.

Monday, May 11, 2015

"She might scratch somebody":

Here's what's making headlines in the disability world this week. A family from Oregon traveling from Disney World was kicked off their flight home after their autistic child was deemed 'disruptive'. If that was all to this story I'd be joining the ranks of the outraged and speaking out against the airline as this would be just another of those stories were the personnel doesn't react appropriately to a customer with special needs. After reading more, I must say I'm on the fence about this one as I don't think the parents handled the situation well.  As their daughter, described in the papers as having highly functioning autism became agitated during the flight, the family believed that getting her some food would calm her down. But she refused to eat anything  that the flight attendants offered to the passengers in their class, as well as things they brought on the plane with them. They then decided that getting her a hot meal would help, so they asked for a first class meal and even offered to pay for it. That however wasn't an option. Here's where things take a turn for the worse: they then told the flight attendant that they fear she might "scratch someone" if she doesn't get it. The meal was provided to her, but the captain decided to land the plane in Salt Lake City. The parents filled a complaint and are contemplating a law suit against United  Airlines. When other passengers asked if they felt threatened as the family was escorted off they said no. Here's what I think: This could have been another one of those stories where the flight attendants don't know what to do or just don't have the patience to deal with a special needs passenger. The mother wants them to get special training as a result of this and quite honestly a little more empathy and understanding never hurt anyone. Disruptive or not, the family needs to get home somehow.

 But, by the same token, the mother surely must recognize that as soon as she uttered the words "she might cut someone" it raised a couple of red flags and put the staff on high alert. Surely, she could have communicated her daughter's needs without suggesting she's about get violent towards other people on the plane. Many outlets covering this story completely ignored the mothers quote making it only about the airline insensitivity yet again. But to me it's the key to understanding the situation.   There are certain words you don't use when you're miles up in the air in a crowded tin can, she may have just as well said  that there's a bomb, or that they will stub somebody with a butterknife- and watch what the reaction would be. I understand that she was frustrated. And that she wanted to present a certain sense of urgency to the flight attendant, maybe she was even using a figure of speech, but never, ever is it okay to say that your child is dangerous to those around it. Yes, it's quite probable that a fifteen year couldn't do that much harm anyway. But I understand why a captain wouldn't want to take that risk. He's responsible for the lives and well-being of everyone on the plane and that sometimes involves making a tough call  with little time and even less information. He can't possibly know how this might unfold.  And after the Germanwings pilot willfully crashed his plane killing everyone on board, air travel became more stressful virtually overnight. The child was disruptive because she didn't know any better, but the mother should. Yes, I know- in a highly stressful situation our emotions often get the best of us. But here's a rule of thumb- if you have a child with disability, especially if it's a condition that is not obvious or plainly visible- tell the agent at the gate and the flight attendant. That way they know what to expect and also will do what they can to make the trip more pleasant. I'm in a wheelchair, so my condition is fairly obvious. On many occasions I've been approached by the airline personnel to either switch me out to the isle sit, somewhere close to the bathroom or even bump me up to the first class. They always make sure to explain the boarding process to me and go out of their way to ask me if I don't need  anything like use the restroom. In contrast they're not as responsive when I travel with other people because the assumption is "they got it covered". Bottom line: I wonder how much the mother communicated to the staff before the flight about her daughter peculiar needs. I think, had they been warned beforehand they may have had  reacted better even as they heard that the girl might scratch people if she doesn't get her way. A disability is not a shameful secret, don't be afraid to talk about it.

Friday, May 8, 2015

A woman in a wheelchair wins treadmill, internet gets up in arms

Here's a story that's been spreading on the internet until someone from my Foundation's crew sent me link. Can you believe it? A woman  in a wheelchair won a treadmill on a TV game show. At first you might think, "Wow, this has to be one of the most awkward moments on camera". Can you imagine the contrast: a machine designed to utilize the body parts many people with disabilities cannot use. The initial reaction is to blame the producers and the sponsors- "Why would they do that?" "Isn't that insensitive? But then my reaction might surprise you. I don't really get what the big deal is. Yes, it does play up a bit like a South Park episode, but haven't we crossed the line with the political correctness with stories like these?   If you ask what she could do with a treadmill I can tell you- she can sell it, give it away as a Christmas present, have it stand in her living room as a conversation piece or use it as a dogie walker machine. But most importantly, she can ask for a cash value of the prizes she won- as it is most often the option on a show like that. And that's assuming that we know anything about her level of mobility, because it might just as well be that like many people in wheelchairs she has some limited use of her legs and might be able to use it herself. How is it different from a man with obesity, a heart condition or diabetes winning gym equipment. Or a couple getting a furniture set for their living room that clashes with everything and that they will never use.? The only difference is that it's obvious from the get go that the prize might not be the best fit for the player. I can't speak for the woman, but I know fully well that there are things in this world that I can't use or where not designed for me because of my condition. And I'm not offended by it. Hey, I don't drive and still wouldn't turn down a free car. What should the producers do. Prepare a long questionnaire on what they can or can't do, what they like and what they wouldn't like to win in the off-chance that someone gets offended? Switch out every prize before each person gets to play to make sure nobody feels bad? Or do we just do it with people in wheelchairs. Yes, at first it looks a bit funny like a badly drafted comedy. But then when you think about it, people who make a big deal out of it are the one with the problem if they think the showrunners did something wrong. Because they assume that for a person in a wheelchair, being in it is a touchy subject and every reminder of activity and walking must be offensive.  Here's what I think: I'm in a wheelchair and if somebody gave me a valuable piece of equipment, like skis I'd be overjoyed and laugh all the way to the bank. And, here's a bit that might shock you- there's a lot of equipment that I do or have used. We've had a stationary bike in our house for years. In order to know what a person can or can't do you'd need to know what their condition and extent of mobility is. You really shouldn't assume things just because you see in a wheelchair. And even then. don't assume that a person reacts to their own disability the same way you do from the outside. The treadmill producer sponsored a show to advertise a product. A pretty valuable investment if you ask me- they did nothing wrong. Yes, they happen to make a product that I personally wouldn't have a use for (although many of my friends in wheelchairs do walk they get tired easy), but taking this personally in any way is absurd. If my mom won rollerblades on a show like this it wouldn't mean she'd be skating across town the next day either. Now if a woman in the chair was asked to give the treadmill a go right there on the air, that would have been inappropriate. Or if there was any evidence that they matched her with this product on purpose. To get the laughs or the drama. Otherwise it's no different from the trips we will never take, the electronics we'd never use, supplies of food we don't even like. The problem in my view is more with the people who framed this story as offensive. There's one positive out of all of this. It gets people to stop, wonder and care: Is this OK. Sometimes they will arrive at the wrong conclusion.

Monday, May 4, 2015

Religion.

"Here"- a strange man on the bus handed me a religious brochure. I could have said, "No thank you" or even more more  strongly point out that I wasn't interested, something like "Take it back" as it landed on my lap. It was one of those "Discover Islam" folding prints and I have to say I really wasn't intending to even look inside. But he seemed nice and excited about what he just gave me and I din't want to be mean to him. As I was getting off at the next stop I rolled up to the student union building where I was meeting a friend for lunch with a piece of literature in my lap trying to think what to do with it. I felt like throwing it away would be extremely disrespectful to the man and his religion, although he did inconvenience me with it. I didn't care to learn more about it, although I already feel I know a fairly good amount. But still, as much as I wanted to just get rid of it and although he wouldn't be there to see it, I felt I'd much rather give to someone or put in some place. For a second there it felt like the respect for his entire belief system has literally landed in my lap and I felt there needed to be a tactful solution. Maybe it's silly- but if people sincerely believe in something I feel I shouldn't go out of my way to offend them even if I don't subscribe to the same belief system or can relate to them easily. I didn't want to become an advocate for someone's religion either so it wasn't my place to pass it on to someone. It did interest me slightly in a professional sense. Since I've been running a nonprofit how other organizations communicate with the public and promote their mission. It was from some center headquartered at a some shop in a small town in Florida. Interesting. I was not about to convert to a religion, but if I didn't need it, maybe somebody else did. So I left it at the student building. Maybe someone else appreciated the educational experience, but that certainly wasn't me. I have to say, between all the Bible study meetings flyers people give me when I wheel by on UF campus and all the political rally meetings I get from random strangers stopping me on the street, that was definitely a first.

Friday, May 1, 2015

Accessibility 101: Don't assume.

A wheelchair user from Europe reached out to me a few days ago. He's about to tour America and wanted to ask for some tips on accessibility. I always say, it depends where you are. Older cities with historic areas such as New York and Washington DC tend to have more problems than places that had their growth spur in the last couple of decades. My advice when booking a hotel? Even if it shows on one of those tourism websites as "accessible" always check with the front desk. Call them up to make sure what the have and they don't have. Is there an elevator? Do they have rooms on the ground floor? Even if you don't need a special, "wheelchair friendly" adapted room- if like me you can crawl or lean on the furniture to get around- confirm that it's not set up in a way that can hardly fit a wheelchair in there (which was my latest experience at a Days Inn in Ft Lauderdale). Bottom line: educate yourself, get the information you need, because you may end up sitting in your chair in front of a hotel with an elegant staircase leading to the front entrance frantically calling the front desk and freezing your hands off in the middle of winter. All because the website I used to book it with had it listed as accessible. It turned out that it wasn't, so I was on the phone with the site, while they were looking for a hotel to put me in. No apologies, no discounts- they're just the agent. The man wasn't really pleased with what I told him. He thought New York City is very accessible. And it is- compared to some places in Europe for example it's heaven. But then, I don't care for statistics. I can either get somewhere or I can't. If I'm rolling down the sidewalk and there's no ramp forcing me to go back a block- it doesn't help me that 70, 80% or however large number of the city is wheelchair accessible. It doesn't make me feel better if I'm in the wrong area, if this is where I am at the moment. That this is a sidewalk of a limited number of sidewalks in Manhattan that I should avoid if I'm already on it. All I know is, sidewalks were an issue for me in New York City. And there were subway stations that where not wheelchair friendly, you had to find the one in the area that was. That seeing all those buildings with stairs I would never be able to enter made me sad.  You do develop this "It could be worse" type of an attitude. But I do get where he's coming from. For the longest time after I moved to this country I had this "it has to work out"approach, which made me bold. I assumed everything would be wheelchair accessible, because this is America- people make it here. And then if it wasn't - I treated that as a problem that I had to solve, because I needed to make it there. That for some reason gave me plenty of drive and motivation as if I needed to show the world what I'm made of, but also to validate my own assumptions and presumptions as to what America really was. Failure was not an option. I reacted to every obstacle with even more energy and  "I got this" kind of a take. There was no stopping me. Then I told him about my experiences in DC- "Accessible room" meant a $20 shower handicapped sit over a pretty regular bathtub. Then I told him to make sure to ask for the right type of the bed. With the big boxsprings and mattress and the fluffy covers a person sitting down in a wheelchair can actually be lower than the top of the bed, making it so much harder to get in and out. Bottom line: don't be afraid to ask and to straight to the horses mouth. Don't assume that just because it's a good chain or a city that you know well that it has to work out. Because if there is a problem, it's much better to deal with it over the phone from the comfort of your home rather than the sidewalk in front of your hotel when you're trying to think what what to do next and how you got into this situation. The front desk people, they just work there and you'll be the one stuck with the consequences.