Showing posts with label wheelchair coping. Show all posts

1. Awesome concert seating accommodations. Whenever I go to concerts or sporting events I have always been appropriately accommodated. This usually means getting seats that enable me to view the stage / field, but also maintains my safety. Sometimes there is a roped off section for wheelchair seating (plus one or two guests), other times accessible seating is intermingled with the rest of the concert goers. Either way though, I have never complained about this and ... neither have my friends =) It's particularly sneaky when I (purposely) buy tickets that are NOT accessible beforehand.. and on the day of the event, places will have no choice but to put me in accessible seating! This way I'll just wind up paying the difference of the costs ;-)

2. Courteous and chivalrous behavior. Although there will be some obnoxiously rude moments, for the most part I can expect people will treat me courteously. Who said chivalry was dead? Chairs are always pulled out for me, doors are always held open, and usually I am allowed to enter the elevator or other places first. Also, I personally think it rude when guys check out a woman's ass. Glad that I'm usually sitting down to avoid that kind of staring.

3. No one questions what I'm doing. I might be climbing on top of my wheelchair. I might be driving in the middle of the street in the middle of winter. I might need someone to carry my tray for me while I just point at everything I want to eat. I might be setting off the alarm to an accessible exit / door. Or I might be taking longer than necessary in the accessible bathroom. But rare is the moment when I am questioned about my actions. If any non-wheelchair user were asked why they got to cut the line to the dressing room (to get to the accessible dressing room)... they might get glared at. Me? No one questions me. The wheelchair silently answers all of their questions.

4. I can stop traffic. Growing up in the Northeast (in a city that's known for its crude driving behavior), I have learned that being able to stop traffic is a power I should wield more frequently. In the winters the sidewalks are usually poorly shoveled and there have often been times when I just drive my chair in the middle of the street instead. Even in Boston, a driver that honks at a wheelchair trying to survive the harsh winter would be deemed "Epic Masshole." Other situations: when construction is blocking the ONE curb cut to a sidewalk, I have had police officers stop traffic and construction for me to cross safely. At first I thought it was a bit awkward and silly, but now I think it's just amazing.

5. They don't ask me for money. You know them. Those, usually, 20-somethings who are standing outside in every form of weather wearing THOSE t-shirts, holding those clipboards... ready to accept your Master Card, Visa or American Express for a donation to save the whales. Usually when I'm cruising the city my wheelchair is lower to the ground, this makes me able to go faster - way too fast for them to ask me "do you care about?" It's not that I don't care, it's just that I don't want to be bothered filing out 500 lines of personal identification, and then tugging out a credit card in the vain hopes that maybe my $20/month donation may drastically save a baby otter RIGHT NOW!

What's on your list of perks?? 

1. It's an Automatic Door. By Definition You Don't Need to Hold it Open For Me. 

By the time Thursday morning at 6AM rolls around my body is audibly grumpy with me. If I could imagine it speaking it would probably say something like:

...Sorry body, but there isn't really a choice for you.

Aaron Fotheringham takes wheelchair sitting to the xtreme!

Every now and then I find myself out in public being pushed in my manual wheelchair by someone else. This chair is usually only used if I'm out somewhere with friends and needed them to drive me (manual wheelchairs fold into trunks easier than power chairs), or if I am somewhere that might not be accessible (these chairs are far lighter and easier to lift than power chairs). I didn't get my power wheelchair until I was in the fifth grade so I had been dependent on other people pushing me for at least 10 years or so as a young child.
Manual wheelchairs are not my favorite because they can easily tip over outside, and when I am using one it means that I am dependent on someone else to get around. Along with that it also means that I am at the mercy of that individual's wheelchair pushing skills. Some people are great at maneuvering me, their instinct and sensitivity for knowing just how much to tilt back to get over a curb cut is superb. Other people may carelessly bump me into door frames, or they do not realize that my small wheels don't just roll over pot holes in the same manner a car may be able to. But all of that doesn't usually bother me, and if it becomes an issue I usually help to guide the chair by putting my hands on the wheels when bumps or cracks in the sidewalk come nearer. This way I don't feel rude and it is an alternative to saying "hey, if I fall flat on my face because you don't see that bump my next fractures are going to be on your hands!"
What bothers me is the way people who push wheelchairs treat the person in the chair; usually it is quite unintentional and these mannerisms are totally oblivious to the pusher. Please note that what I list below are only things that bother me, and should not be applied to every single person in a wheelchair :

1. If you are talking to someone, even if that person is not addressing the person you are pushing in the wheelchair - turn the wheelchair to face the person you are talking to as well! One time this failed to happen and my friend ended up having a 10min+ long conversation with someone else as I sat there angled in a different direction, trying to find the crowd of teenagers at the mall to be totally engrossing. There have been many occasions when this has happened and after awhile I begin to feel like a wheelbarrow being shoved along, not a person who is actually there.

2. As many of us know not every single place in the world is wheelchair accessible. If the chair needs to be set aside while someone else runs inside the store or restaurant, avoid leaving the wheelchair in some remote or isolated place. When I was younger this happened quite frequently. I would be parked in some corner while my parents ran in to pick-up a lunch order or went to go return something; these errands would always be done "quickly" and I was always told "I'll be right back, just sit here." Obviously I'm just going to sit there, I'm not about to take off and soar into the clouds. If you're waiting in an isolated place what seems like 2-3 minutes can seem like hours; as a kid I used to dream up scenarios where my parents had actually left me there never to return again!

3. Ask if I would like to pace around with you. It's quite common to forget that you are pushing a wheelchair with an individual in it who is a totally separate entity from you. There have been times when suddenly I find myself going up and down corridors, or being swiftly jerked around corners and speeding at a breathless pace down hallways. Just because you are pacing around it doesn't mean the person you are pushing needs to as well. Or just because you want to chase after your friend  don't assume that the person you are pushing wants to join in on the wind sprint as well.

4. Talk to me not above me. Chances are if you're pushing me you probably tower over me. This doesn't mean it's appropriate to speak over my head if you are addressing me; I have frequently gotten confused when people do this because I am not sure if they are speaking to someone around me or actually speaking to me. This behavior along with my hearing loss adds to many communications confusions.

Take-away Thoughts on Pushing Etiquette:

• Just remember that the person you are pushing is exactly that, a person. If you are uncertain of how you should treat the situation just remind yourself of this and do what is most natural to you.
• If you're the person IN the wheelchair: begin to keep track of what really bothers you and what works; letting someone know "usually this has been the best way to go about it..." can save a lot of hassle and embarrassment instead of just literally, rolling with it.

In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into oi.perfect@yahoo.com   

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Fracture Free Friday Q: How do you handle kids when they stand directly in front of you or besides you and just stare? Do you ignore them or say something? What do you say if they ask, “Why are you in a wheelchair?” or “Why are you so little?”


A: The little tots and sometimes even babies will just pop out of nowhere! They waddle up to my wheelchair and with their drooling gurgling mouths will try to suck at the joystick, or roll my tires. Usually I look around for an adult who is chasing after them - arms out wide, feet spread out, and a totally horrified look on their face. 
"I'm so sorry about this... he's just curious."
"It's okay, don't worry about it" I smile down at the small human, uncertain if I need to explain my existence; then I realize that ten syllable diseases might be too much for a kid who doesn't know her elbow from her head yet. 


Kids can tell. They always can tell and they always announce it when they can! There are no boundaries with them and any 'oddity' or slightly different pattern from the norm will catch their attention like gnats to fly paper. Eyes widen, faces stricken with awe, and if you ever wanted to see what having something on the tip of your tongue but you can't say it looks like - just watch a kid looking at a small human cruising in a wheelchair for the first time. 
Do you explain to them that your bones are brittle? Will a simple "I have trouble walking" put a stop to the gawking? What about "I'm disabled" ? Or I have known some parents to explain to their child "she has a broken leg" (when actually I don't...) It can certainly be confusing because you don't know how much is too much and whether or not you are stepping over parenting boundaries - what if their parents want to teach them about disabilities or differences in a way other than how I am explaining it?
I have clearly over thought this situation too many times as I'm sure many of my readers have as well. When it gets down to the moment though it usually depends on how I'm feeling. Sometimes I quickly assess how old the child might be, what she or he may understand and also how open the adult they are with seems. Some of my "fall back" answers when I'm not sure what to say have been: "my bones haven't grown very well" or "I have trouble walking so the wheelchair helps me." 
These responses, I hope, are covering some basics that most children by the age of five have understood. In other words, at this age they (I am assuming) understand that their bodies should be growing bigger, and that they have all experienced a time when they have needed help from mom, dad, or a stroller. It's not to say that I am comparing the wheelchair to a stroller, but the assistive device has a similar function to my life as the stroller does to theirs. 
All of the above is if I am in a good mood. Sometimes though I just don't want to explain myself, or I get the sense that their parents may be embarrassed by their child's questioning and want to answer the inquiries themselves. In these instances I pretend to ignore but I'm actually listening. I smile at both the child and the adult, give a "hello" and wait to see if either the adult or child addresses me directly. Sometimes parents will say "well you can ask the lady herself" or they will kneel down with their kid and look at me as well and give an explanation: "she's sitting in a wheelchair because her legs are broken" or something similar. 
As an adult I think I have a better sense of what would be appropriate to say and what would not be. When this happened to me as a young child I would feel completely embarrassed and sometimes just seek out my parents or older brother and cower besides them. I remember a few times though, as a child, when I would simply say "my bones break easily and I can't walk well" - then quickly brush the gawking peer off. But I also remember times when, as a kid, other kids would simply just approach me with a shy "hi" - they knew something was different, but they also knew that I was still a child myself and were uncertain of how to behave. I remember those times were moments when I could feel myself gaining more confidence in who I am. 


Now that I think about it I realize that despite these instances happening frequently, I always do feel a little awkward. Maybe it's because I am just uncertain of how to behave around children who are younger than eight years old, but they do make me nervous! I think a part of me feels like I might be their first introduction to a 'wheelchair' or to the concept of a disability, and thus don't want to "mess it up." But another part of me also feels like maybe I'm not so sure of how to simplify osteogenesis imperfecta myself! The condition encompasses my entire life, how do I respond in a way that a young child will understand but also be as accurate in my description as possible? 


Readers: Let me know of some responses that you have given in these situations. Email me your responses and I will post them in a separate entry! oi.perfect@yahoo.com

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.

1. When people say "sorry" after exiting the accessible bathroom stall
Look, we all need to do what we need to do. It's a public bathroom stall and unless you shoved me out of the way and went ahead and used it first while I was still in line - it's totally fine if you use that stall. It doesn't have my name on it! Someday though... when I get my own house, or when I become supreme ruler of the universe - whichever comes first.

2. A max view of the maximus gluteus
Being in a wheelchair means that I am at crotch or butt view. Sometimes I don't mind it. But those sometimes situations is purely restricted and determined by me only. These restrictions follow the guidelines of me voluntarily choosing which view and which maximus I want to view. Also, don't fart in my face. I mean that's just common sense.

3. Allowing me to cut 1 place in a line
Sometimes I'll be at the grocery store or waiting in line at the cafe and some well-intentioned stranger will say "oh here, you can go first." And as I do the awkward "no it's okay..." they'll insist on allowing me that THREE MINUTES of wait time and 5 inches of space ahead of them... as if it'll save me from the hours of sitting I have already been doing earlier in the day. Also this is even more ridiculous to me when it's a line of more than 5 people.

4. When both doors are opened at the same time
I'm not the Queen of England or even the head of my household. I'm not even the first born child. But it's a little hysterical to me every time I exit or enter a place and strangers will insist on opening both doors for me simultaneously. Should I be offended? Is my wheelchair that wide of a load? Am I fat? Do people know how ridiculous they look when half their body is hanging on to one side of a door, and then they fling their other arm across to try and open the other door. And I make the grand entrance ... right under their arm pit?! Thanks for reminding me that I am that short and apparently that helpless too.

5. Could you just walk over to the side of the counter please
There is this one ice cream parlor that I enjoy and in order to give them my order I have to shout over what seems like The Great Wall of China to get a waffle cone, no sprinkles, one scoop of Oreo cake batter. Sometimes I will angle my wheelchair to the side where it's a bit lower and I can see which hipster college-student employee is preparing my treat. And after that 0.009 seconds of playing "Where's the Customer?" they spot me and that light bulb flashes over them and they seem to get it... but still they dangle the cone over the Wall. And when I grab my treat sometimes I feel like I just won an award at a carnival game, but my prize is edible and not some fluffy stuffed animal.

Addressing Pet Peeves:

•  Each of the above are amusing to me and I've come to understand that they are just part of the package of my 'unique perspective' in life. But whenever it gets to be too much I have gotten better at addressing it, pointing out when pet peeves annoy you will only seem like whining and complaining if you make it that way - there are other ways to say it to be informative and you may even help someone else understand better!
• Just because it's a pet peeve for you doesn't mean that it's a pet peeve for everyone who has a disability, is in a wheelchair, or has O.I.
• I have begun to pick up on the fine line that separates a pet peeve from people who behave out of ignorance. I'm still learning how to navigate these situations but I've come to find that they should be handled differently and cautiously. 

• I must admit that I feel odd offering suggestions on this topic as it is something I am forever working on myself. But, like so much else in life, I think the first lesson is taught from the family. Whether parents are successful or not in advocating for their children should not be the "main" steal for the show. Instead HOW mom or dad goes about advocating for their children should be an experience every child - disabled or not - witnesses firsthand. 
• Understand the fine lines between advocating, complaining, and arguing. This is something that I am only beginning to understand the differences between.
• Just because you are advocating for an issue doesn't mean that it is also your SOLE responsibility to provide a solution for the issue. Everyone should be involved. 
• Just as you should not feel like you're completely responsible for a solution, you should not need to feel alone in advocating either. Friends, family, other organizations/individuals can help as well. 
• It just takes practice. 

Snowflakes laughed gleefully down from the sky, it was April. April first. I can assure you that no one else in Boston was amused. I was taking my usual lunch break at the Barnes & Nobles Starbucks down the street from my office. A cup of hot chocolate in one hand and Cutting for Stone in the other, it might as well have been any other snowy afternoon in December. But it was April and everyone was a little thrown by the flurries. I looked up once in awhile to watch nannies chase toddlers around in snow suits as toys fell out of strollers, students were studying for exams, and old people were flipping through retirement advice in magazines. From the corner of my eye I saw a lady slow-munching on a sandwich, her thoughtful chewing was paired with her watchful eyes on me. I sat there for my full hour of a lunch break and felt the cold snap of her eyes on me the whole time. 

Yes, I know. We don't see it as a 'disability' or a 'handicap' or any other negative connotation. But let's not kid ourselves here - there have been situations in life when I have envied able bodied people. And one situation has always tripped me up: I'm not able to be as physically relentless as my peers. I see that when my brothers get angry they go for a run, or when my friends get frustrated they go punch a bag, the wall, the door... some object that when I play it out in my head, I know would result in a painful fracture. One that would be even more frustrating, aggravating, and upsetting to deal with than whatever original situation had gotten me so upset. That moment is always humbling for me. It puts everything into perspective, that whatever is bothering me - there is always a better/safer way to let out the frustration and hurt.

Suggestions to Un-Break the Anger: