Showing posts with label accessible equipment. Show all posts

Dear Toilet-Paper-Allll-the-Way-Over-There,

By | Published Tuesday, May 8, 2012

Since you spend your days a convenient just-out-of-reach-feet from the toilet, and your view of the outside world is only gleaned from the millimeters of space between the door and stall walls.. let me take a moment to tell you exactly how it is out there:

My bladder was damn near ready to burst by the time that woman finally came out of the wheelchair accessible stall. 
"Oh I'm sorry.." she says guiltily. She exits by painfully shuffling on the balls of her feet that are perched at a harrowing 85 degree angle, five inches from the floor. This sends my otherwise forgiving demeanor somewhere far out into space. 
"It's fine" I mutter. 
The second she clears enough space for me to swoop in I make the dive into the stall. She stands by the stall door, one hand holding it open and the other struggling with a run in her pantyhose. 
"I got it, thanks." One foot tilts upwards to bring the stall door shut and my hand reaches up to slide the bolt into place - jiggling it just enough to make sure that it is secure. 

At this point the urgency has almost reached that point of no return. I have got to go, right now. 

The rest of my motions are thanks to muscle memory automation: angle the wheelchair just right, unzip my fly, jeans down, transfer over, and aaahhh the release is cathartic. But all of that is quickly dashed when I see your endlessly fluffy self smirking all the way over there. 

And it isn't until that point that I realize I've stumbled into someone else's tense family reunion I wasn't even invited to. Oops. 
There are your relatives: Cousin Grab Bar, Grandma Dispenser, Great Aunt Toilet, your hipster younger brother Automatic Flush, your awkward step-sister Feminine Product-Disposal, and of course the head-of-household your mother Baby Changing-Area. Everyone is looking at me as if I were the one who forced your dad Mr. Urinal to leave your mother high and dry; and right when I burst into the scene you were all talking about what a heartless home-wrecker I am. 

I'm sorry to break the news to you but it wasn't me. 

I just came to do what I need to do, then I'll be out of your way and out of your family business. But first you've got to let me take care of my business. You see, that's what you don't understand since you never leave these four walls - this is how the world works outside of a stall. 
Quite frankly ignoring me by turning to face the other way is just childish. It's time you grew up and learned to play by the rules. For instance Cousin Grab Bar is exactly 42inches long and about a foot from the rear wall. Great Aunt Toilet is an appropriate 17inches tall. Even your mother must abide by regulations that limit her maternal reach as a protruding object! What makes you so darned special that you are allowed to hang a lofty 5ft away and 2ft above my head? Hate to dole you out a roll of less-than-soft reality, but at the end of the day you are flushed down the drain! And then you are replaced without a second thought to whatever fond memories you may have had with your family. 

They tell me that your time in this life is measured by your deeds and not by your years. So come on already, let me be your opportunity to do a good deed!
No? Fine. You're a stubborn one. I'll get up because your Cousin Grab Bar will lend me a hand, stand on the foot rests of my wheelchair, reach over and snag you anyway. Oh, I should mention that this next part might hurt a bit: 
I'm going to pull you by your ear, drag you out and wrap you around Cousin Grab Bar a few times. Then I'm going sit back down and do what I first came here to do and leave you embracing your Cousin. You think you're stubborn? Please, I invented that concept! You will learn to be purposeful, to love your family, and to practice doing good deeds if it's the last thing I do!

Tough lovingly yours,
Sandy 


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Wrap-Up

By | Published Friday, October 7, 2011

Most of the posts for this week were more focused on my current/adult life. I talked about my college years, gave advice on the college essay, and went into the joys of being in your 20's. So when I got this week's Fracture Free Friday question it was nice to think back on my childhood... who could dislike the memories of a whimsy and carefree time! :-)

  • Monday: In my opinion (and from what my friends say) being in your 20's with a disability is not much unlike being in your  20's without a disability! So, what's it like now? 
  • Tuesday: It can be highly amusing to me when people freak out over incidents when my friends are more seriously injured."Trust me, I'm fine."
  • Fracture Free Friday: This week's question dealt with one mother's uncertainty of how to encourage her daughter's dreams of becoming a ballerina but also being realistic. Dreams vs. Reality 




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Steve Jobs - The Man Who Thought Different

By | Published Thursday, October 6, 2011

As I'm sure most of you have probably heard by now (maybe on a device he invented no less), yesterday we lost Steve Jobs, Apple Co-Founder, CEO, and Chairman. Since I'm a gadgety and techy person of course I always stayed up-to-date with Apple's latest rumors and innovations; I was always fascinated by how much of Apple's technology strove to be more accessible -- to everyone, with or without a disability. 
Stevie Wonder, the world renowned singer who has been blind since birth recently said at a concert: "His company took the challenge in making his technology accessible to everyone," and then went on to say “There’s nothing on the iPhone or iPad that you can do that I can’t do.” (Stevie Wonder thanks Steve Jobs)

While reflecting back on the technology he has provided and envisioned, I have also been remembering how technology in general has greatly improved my life during the worst of times with O.I. For instance speech-to-text programs (when arms are broken and you have 10 page papers to write), textbooks that are available on CD to lighten 500lb backpacks, captions on t.v. shows/movies/youtube videos, wheelchairs with fold-able lap desks for my laptop in lectures, hearing-aids that have the ability to switch to telephone mode, sinks and cabinets that will lower to my height, and the list just goes on! 
Technology doesn't necessarily need to have an electrical cord and battery power to be considered 'hi-tech' either. Today there are so many accessible and adaptable equipment out there that sometimes I find those gadgets to be just as beneficial if not more. Shower chairs that can extend to support a long leg cast, reachers & grabber sticks that are collapse-able, or sound and motion detecting light sensors. Growing-up my parents showed me that innovation can mean sewing clothes that will fit your daughters' casts, or attaching make-shift boards so that she is more easily able to transfer between bed and wheelchair with a cast on, and teaching her that grab-bars in public bathrooms can be used for other things aside from support while transferring.  Innovation isn't necessarily the most complicated and flashy looking gadget, I believe that what made Steve Jobs' technology so successful is because he dared to make our lives more accessible through technology -- as opposed to more luxurious or 'advanced.' Macs and other Apple products are known for being intuitive and user-friendly, everything from the pinch and swipe to audible text.  His drive was not money or fame, instead his devices sought to provide a more inclusive and accessible world -- goals that I know many other disabled people dream of as well. 

Though our world and society has certainly lost an incredible and daring mind, I am confident that through the widespread use of his technology our society will continue to expand our definition of innovation by thinking different.   

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That Voice I Shouldn't Be Used To

By | Published Thursday, August 11, 2011

Background info: In the city where I live there is a public/private van that picks up disabled individuals and provides door-to-door service. Although I definitely prefer the independence of public transportation and not have to rely on these rides, unfortunately my family's house is in the middle of the suburban woods and isolated from any form of public transportation. 

*****

Rain fell wildly and angrily from the sky that evening after dinner. We were cold, our jeans clung to our legs, and I shivered as the AC blasted above us in the van that picked us up. As I shivered and tried to dry off by wiping off my wheelchair's armrests and seat, the driver made empty conversation as he went about strapping my wheelchair down. First were the two back wheel locks, then the two front ones, 
"Alright let's get you out of this rain eh? Hahaha" 
"Heh, yeah."  I mumbled. What was he chuckling about? There was nothing funny about being drenched in the rain. 
"So had you been waiting long? Did you notice that I came early? I came early for you!" He said eagerly.
"No we hadn't been waiting too long. Thanks for coming earlier, we appreciate it."  
He then headed to the front of the bus and closed the passenger side door, the lights inside the van shut off automatically. The only source of light was the streetlamp a few feet away from the van, but that was blurry at best as it tried to dodge past the frenzy of the windshield wipers. I could feel my friend R immediately tense up as she sat there in awe of her first wheel chair-van riding experience. I realized I had forgotten to explain to her beforehand that it was required they lock my wheelchair up with what would look like 500 tie-downs and seat belts.
The driver finished putting the two front tie-downs on my wheels and then strapped on a seat belt over the orange velcro belt he had already put on me. It doesn't matter that I already have a seat belt on my wheelchair, the other five seat belts across me were required, as I had been told countless number of times. After he finished putting all the safety precautions on me he went outside again to fold the ramp back up,
"Umm Sandy, I have.. a lot of observations right now. Like, are you okay? Is this normal? What is going on right now?" In her typical fashion R already had a scowl on her face it was the one where the alarm in her gut instinct just went off. 
"Yeah they have to do this. It's just for safety reasons. I've had this driver before though, just warning you -- he's a talker."
"Okay but.. what if something happens to you? Like what if I weren't here? It.. well.. it just doesn't look like you would be able to get out of the van if something bad happened."
"I know, you're right. I've always wondered that myself just never asked." 

The driver got back inside his seat and marked down some information on his clipboard. Instead of turning the van lights on though he put his glasses on that... wait..
"Umm do your glasses have flashlights on them?" I asked uncertainly, thinking that maybe the rain and the blurry lights were playing tricks on me.
"They do have lights on them. Y'know.. it's so that I can keep my eyes.. on you." He glanced up at the rear view mirror and smirked at me. 
"Oh.. cool. You kinda look like an eye doctor." He laughed at my comment in an odd nervous falsetto. Next to me my friend R had a completely horrified and puzzled look on her face. I settled into my seat for a few minutes as we headed towards the highway,
"So you'll be my GPS right girl?" He looked at me.
"Yeah sure, no problem" I replied. 

About ten minutes passed before I decided to interrupt his odd rambling and his thousandth comment about how rainy it was, 
"Can I ask you a question?" He looked at me from the rear view mirror expectantly waiting,
"How would I get out if... well..if" It wasn't until half-way through my question that I realized asking him about a worst-case scenario late in the evening in the middle of monsoon-like rain that it probably wasn't the best timing, but I went ahead with it anyway,
"...if something bad happened? Like if there was an accident?"
"WWOOOOOWWwww. Really? I mean, THANKS for the vote of confidence."
"No- I'm sorry, I wasn't implying anything. I was just wondering, it's something I've always wanted to know." 
"Yeah? Sure. Well I hope you didn't just jinx me. I've never had anything happen to me though, knock on wood. Well you know, we're just real careful. I mean, it would never be anything so serious that I couldn't get you out or anything. Don't you trust me?" His voice bordered between that of a new father talking to his child and the host of some day-time kids show. R twisted in her seat and continued to scowl. 
"Oh sure, of course I trust you. I was just wondering, y'know. No big deal. Sorry - timing has never really been my strength."
"And here I was thinking that you were going to request a radio station or something.. hahahahaha" There was that laugh again. The sound of it echoed awkwardly in the odd silence and darkness inside the van, outside rain continued to beat down senselessly. For the rest of the trip back to my house I stayed silent and uncomfortable, rain water had seeped into the seat of my wheelchair, the back of my t-shirt felt like it had grown tentacles and would never let go of my skin. All I wanted was to peel off this wet fabric and denim from my body and jump into something DRY. 

Finally we were home. There is something demoralizing about having to sit in a wheelchair in a torrential downpour, at night. But for those 10 seconds that it takes for the ramp to deploy and lower itself to the ground, I felt beyond pathetic and helpless. 
"Let's get you out of that rain eh? Let's just get you out of that rain!" The driver stood on my driveway, maniacally repeating himself and shaking raindrops that trickled down his bald head - somehow he still had that silly grin on his face. At that moment I decided that when you try to hurry those ramps down, it will only seem like it'll take another five minutes to finally touch ground. 
But finally it did and my friend and I clambered out of our wet clothes and changed into dry pajamas, exhausted from the day, the weather, his cackling falsetto laugh that he seemed to hurriedly scotch-tape to the end of every statement he made, the massive dinner.. When we were both in bed and about ready to pass out R openly expressed her concern with me: 

"Sandy that was really creepy. Are the drivers usually like that?"
"Nah, most of the time I just sit there with my iPod on and they don't bother me. He's a special one though, he's always like that." 
"I just keep thinking like, if it were me on that van -- you know, he wouldn't talk to me like he talked to you. In fact, did you notice? He didn't talk to me in the same way he talked to you."
"Oh... well.. no I didn't really notice. I don't really pay attention to this stuff as much as I should."
"He knows that's not how you talk to a 20 something year-old woman. He knows because he didn't talk to me like that. Ugh it was just so creepy!" 
"I guess I don't notice the difference in way people treat me. I don't know why." 
"Well, it's probably because you expect it at this point. You're used to it. I noticed that when we went to Vegas, everyone treated you with that voice."
"I mean I know that it's wrong but I've never known how to address it. I don't know how to without sounding rude or brusque or frustrated. I just accept it and then I'm always trying to prove myself 500 times harder than I really should to make up for their assumptions."

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Weekly Wrap-Up

By | Published Friday, August 5, 2011

Just in case you missed any of the entries from this past week, here's a quick sum-up!

  • Monday: Although my academic adviser in college was in a wheelchair, we NEVER talked about disability 'stuff.' But I'm getting better at it though: It Doesn't Need to be Awkward
  • Tuesday: This was a fun entry to write! We've all been asked some head turning questions, these are the ones in my Idiotic Questions Hall of Fame (Responses included...)
  • Fracture Free Friday: Just because I had a cast my Phys Ed teachers still had me participate in gym class. My experience in gym throughout my schooling involved a lot of "tough love." 

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Going away to College - Tips for the physically disabled

By | Published Saturday, July 23, 2011

This past week I wrote about my transition into independence and moving into my first dorm room. The post was published here on Thriving and I hope you got to check it out!

During that time period I remember scouring the internet for advice on dorm-living for the physically disabled. I have to admit that I wasn't too impressed with the results of my findings. While I told the story about the transition I didn't share tips that helped me along that process. With that in mind I figure I'd list a few helpful tips in today's post, so here we go (Note: These tips apply to anyone with a physical disability not just O.I.)

Questions to keep in mind:

  • When it snows is the campus plowed? (If you're able to it might not be a bad idea to visit some campuses during the winter)
  • Are all the dorms and classrooms accessible? If not what does the school do?
  • What hospitals is the school close to? Is there accessible public transportation to these hospitals? Does the school provide accessible transportation to these locations?
  • What is the school's medical emergency procedure? 
  • Where is the Office for Students with Disabilities? What services does this office provide?
  • How do I get in contact with the RA (whoever is in charge of the dorms 24/7) should there be an emergency?
  • What is the fire exit plan when elevators cannot be used? 
  • How can my PCA also have access to the dorm? 
  • Can my textbooks be delivered to my dorm so I don't need to carry them myself?
  • Are the desks and chairs able to accommodate wheelchairs in the classroom?
  • What medical notes/forms are needed in order for me to "register" as a disabled student on campus?
  • Is there a place I can store medical equipment other than in my dorm room? The school health services office? Campus security? 
  • Is there another wheelchair I can use on campus in the event that my own wheelchair breaks down? 
...Those are just a few questions that I remember asking. I am sure that there are plenty more but be sure that you make the time to flush out every possible scenario you can think of! This way you are prepared when visiting campus or meeting with a school administrator. Remember, it's always better to be safe than sorry.


Helpful things to pack:
  • Spare batteries/chargers: for hearing-aids or wheelchairs etc.
  • Twist-ties: there can be A LOT of wires in your dorm room from all those electronics & gadgets, twist ties are incredibly useful to keep all of them neat and away from your wheels!
  • Spare wheelchair and any screw drivers or allen wrenches in case something needs to be fixed quickly
  • Medical emergency bag: if you needed to be rushed to the hospital what would you absolutely need? Put all of that stuff into a bag that is always ready to go and easily accessible to anyone in your room
  • That claw grabber thingamajigger ... you know what I'm talking about? 
  • Wheelie containers: if possible try to get all of your storage boxes/drawers on wheels. This way it's easier for you to move them around when it comes time to re-organize your room or for you to get things
  • Definitely get a laundry hamper that is on wheels... we all know students love waiting until that basket gets ridiculously heavy before starting laundry!
  • A mini-fridge that's at an appropriate height. Personally I went with the 2x2/3 cubic foot fridge that also came with a mini freezer; I then put this on top of my drawers so I could reach it instead of leaving it on the floor

If my readers think of any other helpful questions or things to pack please be sure to leave suggestions in the comments section. It'd be awesome if this list became a resource for others who were getting ready for dorm life! 

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It's Always an Adventure

By | Published Monday, June 6, 2011

Of the many ridiculously random skills that I have, one my friends enjoy is my knack for turning everyday events into an adventure. They might think they're just bringing Sandy along for the conversation when they're going to buy errands, but little do they know that instead they'll take a trip down the cargo elevator and then trek across what seems like a snowy Alaskan tundra to go back to the dorms. Whether it's getting stuck in a snowbank, looking for appropriate curb cuts, finding accessible entrances, or getting wheelchair lifts to work - what should be a simple mundane task always manages to become some humorously awkward hoopla.


Well, this one time when we went to go see a movie it was no different:

We were told that the movie we were seeing in would be upstairs, and the dreaded words "follow me, we'll take the lift..." were uttered from the usher's mouth. 
This is just my opinion but whenever I need to follow anyone to "THE LIFT" I begin to get a bit annoyed. There is probably a lot behind architectural codes and building requirements that I don't understand, but why can't we replace those shifty tin boxes that jolt up and down 5 ft at a turtle's pace with an elevator? Or better yet just a ramp of some kind? I'm sure every wheelchair user knows what I'm talking about. You roll into, quite literally a box, and the metal door slams shut. Immediately you feel like you're in a cage, or maybe some kind of amusement park ride - like this particular one at the movie theater. After a series of cranks, slides, flips, and pulling the lap bar across me - the usher had locked me inside of the metal box. This particular lift hung onto the railings of the stairwell, which by the way, was accessed by going down a rather shady hallway. And isn't it always accessed via some shady hallway?! She then took the control box which was attached to the contraption by a cord that looked like it belonged to an old fashioned telephone. The bungee jump cord was spiraled and tangled a bit, but nevertheless she got it to work. She flipped the ON switch, and pressed the magical red button - from somewhere lights began to flash, and - I kid you not - a THEME song began to play. And did you ever notice the uncertain silence that accompanies these situations? You, as the wheelchair user, appear too confident in your silence as you sit there self-assured that Yes, This Is Just Another Day In My Life - while the operator of the machine silently responds with: Yeah, I Am Just Doing My Job. Usually only a "are you ready? Here we go" is exchanged between the two parties. She walked along side me as the tin box ascended the staircase. I felt a bit like an animal being walked with a leash attached to me. 

The contraption spun around a turn on the stairwell and glided to the top of the staircase. She unlatched, unlocked, slid open, lifted up, pressed OFF, and soon I was released from the tin box. My friend and I went into Theater 1 and sat happily watching a big screen for the full 2 hours of the movie. But then we it was time to go back downstairs. 
It was someone different who operated the clanging box this time. Not thinking that it would be an issue, I told my friend that he could wait for me in the lobby and that I would meet him there in a bit. This someone different secured me into the box in the same way the first person did. Except somehow she had gotten the bungee cord wrapped around the gears of the contraption, or something like that. The point was that after 5 minutes nothing was moving, I was still at the top, patiently awaiting for the theme music to turn back on and for my slow descent to the lobby. As she fussed and tugged at the bungee cord I attempted to put a helpful look on my face. But contorting my face muscles into one of patience and calm is, I will admit, rather difficult for me. Especially when in my mind I began to play Worst Case Scenarios in my head. Would I be stuck here for hours? Will I have to leave my wheelchair here? What if this stupid box suddenly breaks on the staircase with me in it?! Will I plunge to my death? And on and on I went... 
It wasn't long after that I exchanged a few frantic text messages with my friend. We decided that he would carry me out of my wheelchair and sit me down on the bench in the lobby. It was deemed safer for the staff at the movie theater to figure out how to get my wheelchair down without me in it. 
"Sandy it's going to be okay. This doesn't really make sense - they are saying that your wheelchair might have been too heavy for the lift to begin with but you went up the staircase without a problem, going down should have been easier." My good friend sat next to me in the lobby and tried to calm me down. I sat there silent, I'm sure he could hear the wheels in my head squeaking away with a frenzy of worry and a bit of embarrassment. I thought to myself: We were just seeing a movie. Why does everything need to be such a hassle with me?! I told him that I felt bad, that it was embarrassing, that I couldn't believe this was actually happening. 

"Hi, so it's your wheelchair eh? Are you okay?" A paramedic crouched down next to me, she had blue latex gloves on. I told her that I was totally fine, that I was just chilling with my complimentary water bottle and now, 15 min later my friend and I were just hanging out with some free movie tickets the manager had given us. And why is it that emergency personnel always ask the most obvious questions? Clearly I am okay! Clearly my wheelchair is stuck. And even more so, clearly, more than 2 people were needed to carry my power wheelchair down the 2 flights of stairs. 
They called "man power" in for back-up and in a few minutes a firetruck had pulled up to the front of the theater. In walked several muscular firemen. They walked in confidently, were directed to where the problem was and though I still had to wait helplessly on the bench, just seeing them made me more hopeful. Within a few minutes of their arrival they came through the door, then they came around the concession stand and I saw a firefighter steering my wheelchair over to me. I smiled, but my grin of relief didn't come until after my friend had put me back into my wheelchair. Everything was working, everything felt the same, I was glad to have my independence literally back under me. 

Trouble-Shooting in Public:
  • Life happens and especially with public accessibility devices you can't always expect them to work 100% of the time. You can only hope and do your best to remain calm. I've learned that it doesn't change the situation much if you are sitting there frantic with worry and embarrassment over the situation
  • Tell yourself that things will work themselves out sooner or later. There are emergency personnel, elevator technicians, staff, caring friends, and your own knowledge - amongst all of that a solution will be found!
  • If your wheelchair does need to be carried or moved down/up stairs or into/out of a building - I have found it safer for me to NOT be in the seat while the chair is being moved. Have a friend or a staff person you feel confident with help seat you somewhere else that is away and safe from the commotion. 
  • Though I didn't know it at the time, I now know that it's helpful to know how much your wheelchair weighs so that you can tell employees or emergency workers what to expect
  • Don't feel embarrassed! I have learned that it's the responsibility of the place to have their equipment functioning and in working order. 
  • Making a fuss and aggravating the situation even more so as it is happening tends to put everyone involved on edge and the entire situation can become tenser. If you choose to do so, you can appropriately express your disappointment or concern with how things were handled after the problem has been solved. 

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