Showing posts with label disabled frustration. Show all posts

One of my loyal twitter followers noted that these questions ALWAYS start off like that. I know what your mother and your teacher told you but there are such things as 'stupid' questions. Being in a wheelchair and 'looking different' I have gotten all kinds of practical, and the more absurdly ridonkulous questions thrown my way. I will share a collection of the 'Special' Questions that made it into the Truly Stupid Questions Hall of Fame. And yes, I actually did give these responses.

Q: Have you ever broken a bone from farting?
A: No but we can try it out right now if you want

Q: Can I play with your wheelchair's joystick?
A: (Usually I scream this at the top of my lungs) STOP MAN HANDLING MY JOYSTICK! 
Many of my friends have asked me this because they think it's fun or 'cool' to drive my wheelchair; I guess if you're my friend there are certain perks to rollin' with me ;-) But I'd like to say something else about this question -- It's slightly stupid to me because in my mind it's like asking someone who is able-bodied "Can I play with your legs?" You try asking someone that and let me know how that goes for you. 


Q: How do you know when you've broken a bone?
A: ....Cuz it'll hurt...like... a sh*t ton!
I think it's similar to asking someone how do you know when you have a migraine or a headache?

Q: You went to college?
A: I didn't just GO, I even graduated!


Q: How fast does your wheelchair go?
A: It goes as fast as I need it to go.
Q: So like 30 mph?
A: No, I don't need it to go 30 mph. It goes as fast as I need it to go, most importantly it goes faster than you.
I don't really understand the fascination with people wanting to know how fast things go. Okay, it is pretty cool and all but... so? In the end people who walk are usually still panting out of breath behind me, or just annoyed that I am not waiting for them. 


Q: You can go to the bathroom by yourself?!
A: Yeah, I even know how to work those automatic hand-dryers and soap dispensers....All. By. Myself!


Q (over the telephone): Wait you're really over 18?
A: Yep. I know I sound young over the phone, I get it a lot.
Q: I can't believe this! You sound like you're about 9! Where's your mother? I don't believe you, prove it to me. Is this a joke?
A: ...it's about to be a joke because I am about to laugh at you for being such a cretin you ginormous tool shed.
Q: Oh. Okay. Yeah...uhh..I guess a little kid wouldn't know those words.

Q: How do you get dressed in the morning?
A: I have fairies that come out of my closet that put clothes on me the same way the little birds put Cinderella's dress on

Q: How do you sleep?
A: Hanging upside down from the rafters in a bubble, breathing in special calcium air that helps my bones get stronger.


Tell'em Like It Is: 

• I know that in most of my tips about communicating with others I am always urging people to be considerate, patient, and polite. But sometimes the situation calls for just giving other people a straight-up honest answer. Maybe a little too honest at times
• Try to have an amused tone when you give snarky answers; there's a difference between giving rude snarky answers and sarcastic/amusing snarky responses
• Be confident about yourself when you respond! People are asking YOU the question, so you should stick to your opinions and beliefs, don't worry about what others might think. If they wanted to they could have asked someone else the question instead, but they asked YOU
• Sometimes questions can seem downright rude. Whenever I get these kinds of questions I make sure that my response includes a tone that lets the other person know that 1. I am slightly offended 2. their question was not okay 3. they better get ready to get slammed back!

This is going to be fairly different from my other posts. I'm not sharing a story or giving advice. I'm just going to... confess? Vent? Below are somethings that sometimes float through my head regarding my disability/having O.I. but I always slam them down. Mute them. I power bomb these thoughts to smithereens before they ever get close to my lips. I routinely snatch them off the diving board of my tongue before they leap out into the world... and I hear it's not always good to keep things bottled inside so here we go: (can you tell this is difficult for me to do? Because it is. I am cringing, like someone is lifting a freshly broken bone)

1. I am jealous you're able-bodied. Actually I hate the 'normal' view of the world you get, the naturalness in which you can just flail your body around, and the way you can just collapse into a freshly sprinkled summer lawn after running your 3-5miles a day.

2. What the hell are you staring at? If I ruled the world I would have run your face over five times by now.

3. Could you be moving any slower? Seriously, not all of us function at this pathetic walking-pace. MOVE. I have places to be and things to do.

4. Go ahead, keep telling me that I'm "not missing much" because I can't get all the way up those stairs. You're only digging yourself deeper into a lie 'cuz I wasn't born yesterday.

5. I'm laughing at your disabled/wheelchair joke because you expect me to. Usually these jokes are dumb as hell to me and not funny at all. But I'm laughing because I'm already socially awkward enough and... everyone else is laughing? And when I make those jokes it's funny because they're true.

.... PHEW. Well, that was interesting to get off my shoulders. I lived and it wasn't actually as bad as I thought it would be!

At first it was because “mom needed to buy groceries in Chinatown, and there was no parking other than the commercial loading zone.” Then, it was because “dad had idled in the 2 Hour Parking zone five minutes too long.” However, by the time “your older brother took the car out with his friends,” I knew better.
The laminated handicap placard is a tangible embodiment of various aspects of my identity; as such, through the years its symbolism has evolved with me. Its presence has changed from malleable plastic to bold statement; its use has gone from reckless privilege to respected right; and its value increased from dispensable convenience to lawful accommodation.

Just like any other child, I was concerned with fitting in – not just at school but also in my family. Aside from physical differences, my aptitude for language, reading, and writing always made me the black sheep. My parents are immigrants who not only struggle with English, but majored in physics and math as university students in China. “English will not bring you money. Numbers, math, and medicine are universal – why can’t you be like your older brother who is going to be a doctor?” For almost a decade, there was one singular act that consistently answered that question: writing letters to waive ticket fines.

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. 

My friend I am about to write about reads this blog so I apologize M in advance for embarrassing you!! (At least it's for a good cause).
----
"Okay so when do you want me to pick you up again?"
"Umm actually I don't because I'm going to see a movie with T and she'll just come get me from the high school."
"Okay that sounds good. .. Wait Sandy, what do you want me to do with your wheelchair?"
"What do you mean?"
"It's still in the back of my trunk --"
"Umm.. I'm in it actually."

None of my friends (who I have met in person) are wheelchair users, never mind have OI. There have been too many times when I'll be out with some friends and they'll start to head for the flight of stairs or the escalator. It doesn't take them long to get flustered, embarrassed, or feel like a total doofus. Usually I just laugh at them or capitalize on my opportunity to remind them of how idiotic they can be. As odd and awkward as those moments can be, I am actually pleased in an odd and awkward kind of way that they happen at all. Let me share:
Is it wrong or shameful of me to be pleased when my friends forget that I'm in a wheelchair? Are they denying a part of me? Are they being selfish when they forget about accommodations? The answer to all of those questions is a resounding no (for me, at least). For me I have interpreted that as my friends seeing me as on the same playing field as they are. So many times in society I am faced with different (lower) standards, wrongly assumed, or my intelligence is thought less of - so when my friends mistakenly head for the escalator at the mall, I am... suffice to say, relieved. In my head I always happily sigh when this happens, with an "oh I can actually be thought of like the other majority." This is also true of friends who tell me about dreams they have about me and I am walking or I am not using my wheelchair. It's not weird.. it's weirdly flattering.

Isn't it a bit off when people overly applaud you for your efforts, that really, took no effort at all? I'm sure this has happened at school, in the work place, or even in your family. It is as if accomplishing something because of your disability is somehow deserving of more stars on the chart. Yes, I agree that people should be recognized for their efforts - but when folks start to give that half smile and that angled-down tilt of their head it starts to sneak towards condescension. Am I wrong? Am I right? There have been times when, I swear, I could have brought back a bag filled with trash that I picked up outside and gotten a standing ovation from co-workers. Let me be clear: I am not looking down at them and nor am I saying that they are any lesser than me. I am thankful for those opportunities and have been fortunate enough to have had amazing workplace experiences. What I'm saying is that as an early 20-something adult, I have not yet come to figure out how to address such awkwardness. But such situations have always forced me to think about assumptions people make about me, and if I am unfairly making similar, if not the same, assumptions about able-bodied people.

Suggestions on working around assumptions:

• Communication is a 2 way street and it is just as much your responsibility as it is the other party. Don't expect that people will know how to treat you because you are in a wheelchair; the individual might not be ignorant just inexperienced
• When someone has assumed your intelligence is less than it actually is, that's an opportunity to be gracious and the bigger person (irony!) Take a step back and realize that s/he probably has no idea what OI is about or, more importantly, what YOU are about. Show them! 
• Saying "I think..." statements when you suggest a more preferable accommodation can come off as less rude as "you should..." i.e. "I think it would be helpful if we could ask the waiter to put us at a lower booth.." as opposed to "the waiter is an idiot, he should move us"
• Somethings may be obvious to your lifestyle but it might not always be obvious to others. There have been too many times when I think "d'uh that is obviously not accessible, that's a 6inch step up." That should be obvious right? Saying something along the lines of "I will still have trouble..." or "could we find an easier way..." instead of "how do you call that accessible?!" 
• Just as it is important to let people know what you need help with and how, it is equally important to let others know if you DO NOT need their assistance - in a thankful manner ie "Oh it's okay thanks, I can pull out the chair myself.."
• I am sure many of us are tired of sounding like we are 9 or female (if you're a guy) over the phone. This can be one of the more infuriating aspects of living life with OI because the other person can't even SEE you! Usually when I get stuck with someone who assumes I am a child I quickly tell them "actually I'm 23...oh I know I sound like I'm 9.. I get that a lot." I've come to find that the last part of the sentence is important because it let's THEM know they are not the only ones but ALSO letting them know you're used to it and to move along in the conversation. 

I will admit that I myself am working on many of the above suggestions. Feel free to suggest some other tips in the comments section!

"okay you're going to feel a pinch from the clamp and then the needle will go in" I gave a microscopic nod, my eyes wide and dead set on the 5inch needle she held. 
"it helps if you close your eyes and take a deep breath in, and then when I say breathe out you should slowly let it out. It'll be over before you know it!" She put the clamp on and I shut my eyes.
"Dude you finally did it!?" Back at the dorms my friends gathered around and asked me how much I bled, and whether or not it hurt. All of them were universally agreeing that it looked 'totally cool.' The it being... my eyebrow piercing. 


Yes my mother was horrified, my dad said nothing, and my brothers thought it was awesome. Why did I do it? Why did I wait until sophomore year of college, and 19 years-old? How come I got my eyebrow pierced before I even got my ears pierced? TO LOOK OLDER.

Taken shortly after "IT" happened.

It was my second year in college and I was tired of being spoken to like a child everywhere I went. Somehow being alone in the world, without my parents, the way other people treated me became more noticeable. I hadn't noticed it until then, but I s'pose having my family and parents around was like having a shield to fend off blatant stares, condescending voices, and crude questioning. Just like any other 19 year-old I wanted to reach my 20's faster, I wanted to prove to myself that I was capable of "being older," but most of all I wanted to prove to all the strangers I passed on the street that I AM FINE.. AND DON'T NEED YOUR HELP. Four years later I realize how much fun that stage in life was for me, but also how silly at the same time. Through internships, work experience, the dating scene, and the help of friends & family - I realized that it's not at all about how "child-like" in stature one might be, but it's about poise and how you hold yourself. There's a confidence that I have gained in my life experiences that have helped me to gain a person's respect and feel less like I'm actually the same height as their leg.
The moment I realized that empowering myself allowed my diminished physical size to seem much greater was a time that I will never forget. It's as important to me as when I first started walking. There's a sense of independence, confidence, and accomplishment that is unique to me and something I can claim as my very own. If I could give every disabled individual something I would give them their own moment of that realization.

Suggestions on 'Seeming Older': 

• It starts from the inside. If you believe that you should no longer be considered a child, it doesn't matter if your voice is high-pitched or you're the size of a 6 year-old. In this case actions speak louder than images. Act the way you'd like to be treated.
• Being smaller means that you probably wear smaller clothes. But this doesn't mean you are stuck with clothes with child-like images and silly slogans on your (professional) attire. There are many tailors around who are able to create appropriate jackets, blazers, pants, slacks, skirts, button ups etc. Another suggestion is to buy smaller sizes of adult clothing and or get them altered. 
• This tip took me years to learn on my own, but there is a way to look at someone without tilting your head upwards 45 degrees with your mouth gaping open. Look INTO the person as opposed to UP AT the person. When meeting someone new, meet their eye-contact as soon as possible. The 'playing-field' will already be half-leveled before you know it. (This takes lots of experience and practice,especially if you're like me and rather shy!)
• If you are fidgety, try not to be fidgety with your wheelchair or other assistive device. Constantly fiddling with your joystick, belt buckle, or gripping your wheels will tend to draw more attention to the image of being disabled. 
• DO NOT be afraid to ask for help. Knowing what you need and how to get what you need is a sign of mature insight. 
• If you find yourself in a situation where you are being treated in a condescending way, it's YOUR responsibility to change it... in a way that is respectful, considerate, and try not to burn bridges as you do so. Sometimes saying something like "well it's good to know I'm aging so well, but I'm actually..." or "Can we find a place for you to sit as well instead of kneeling uncomfortably?" Making light of the situation, or changing it to 'accommodate' the other person tends to do the trick!

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.