Showing posts with label adults with OI. Show all posts

I decided to put together a list of phrases/incidents where my friends and myself have said and thought to ourselves, "gee that person just makes us look bad as someone who is disabled.." or "that person just makes us look like we're just a lazy bunch of disabled people.." 

The person we all know who is content to just live on disability checks..for like, ever.

The disabled panhandler that makes it a point to ask us our name, and calls out to us every time we are within five yards so it appears like we are best buddies to everyone on the block. 

The person who fought a little harder for what she wanted whereas we decided we were fine with the status quo. 

The person who is comfortable and totally chill talking about sex in public, to a non-disabled majority. 

The kid who refuses any pain medication after surgery, the same surgery we whimpered about for weeks. 

The person who didn't just brush off a minor offense, but made it a point to get his message across that that was in fact not okay. 

The person who is a medal-ranking Paralympian, motivational speaker, book writer, triathlon athlete, and then in their spare time they also just happen to be helping their aging parents through claiming their own disability. 

The kid who is standing-up against bullying when at that age we may have just accepted it, or even participated in it as the ones who were bullies. 

The young person who has the guts to tell their family "peace-out yo, I'm moving out on my own." 

The person who bravely reported that their Personal Care Attendant was abusive. 

The individual who worked with their physical therapist for just a little longer so that she could then one day walk without mobility aides. 

The person who told their family members, "no you can't just use my handicap placard whenever you feel like it anymore, especially when I'm not even there."

The person who took their time around the school race track even though they knew it would take three times longer, because we may have preferred to sit in the shade and 'help record times.' 

The person who decided to not use their disability as an excuse, even if that would have been 'easier,' more socially 'expected/accepted,' and even medically condoned. 

The person whose life-style and life-stage most closely resembles the life-styles & stages of their non-disabled counterparts. 

Don't kid yourself, we have all done it I'm sure. We've all compared ourselves to one another. That's the nature of being in a community, and a part of the process of getting to know one another; it's almost necessary I think, to question and think about the impact that others' actions might have on our own perceptions of ourselves, or on the community at large. I think doing this is somewhat healthy because it keeps us in check, it keeps us critical of one another - and most importantly of ourselves.

Confession: I say "oh thanks" after this is said to me. Even though, really? I am not thinking that I am thankful for anything (generally) when this is said to me.

In truth when this is said to me I think that I am being reminded, yet again, that I have *something* to be strong about. Something that the person saying to me, doesn't have. A reminder of my difference. And I know that this thinking has many errors to it! Because I am the person who believes the best of everyone, I believe that everyone lives a life where they have something to be strong for. Something that takes courage in the honesty that we each live our lives with. Still though, this statement bugs me.

Because I'm not a strong person in so many ways. I need someone else's help when opening or pouring a gallon of juice or milk because otherwise it will spill everywhere in that first pour. I need ten more minutes in bed on Monday mornings, ten minutes that inevitably always makes me at least ten minutes late. I do not do horror movies. I don't care how little blood or how fake-looking the creepy monster is - I just don't. I need juice to chase away the liquid Robitussin that I take when I get sick. Also, I need to build myself up to the taste of the liquid Robitussin that I take (and this takes some amount of mental coaxing.) For the first two months of school I always have to write down everything I say before I actually say them, until I get used to things. I make my friends wait with me for the bus at night because I do not want to wait by myself, or I resort to the pretend-to-talk-on-my-phone trick. When winter arrives I shake my boots upside down with unnecessary vigor in case there are spiders, or spider eggs that have somehow gotten inside during the other months I wasn't wearing them. And also in new places I've never slept before (like hotel rooms), I have to have the bathroom light left on because otherwise I get... umm.. nervous.

In my mind those are the things that I have had to be strong for in my life. Those are the things where I have actually had to take effort and say "okay, I can do this.. this is actually just an illogical fear because I am a ridiculous and absurd freakazoid." But the person who tells me "you're such a strong person" probably doesn't know about any of those absurdities. I know this because usually... I have been told "you're such a strong person" for the really simple things that I do. The things that I don't really have a choice about doing.
I don't have a choice in getting out of bed and going about my day. But I have been told "you're such a strong person" for doing just that! I don't have a choice in going to school with a cast on.. because, well because my parents said I need to go or I'll be in even more trouble! I don't have a choice in the surgery that I needed because that was the only option that would make me better. I also didn't have a choice when I went to that job interview because in order to reach my goal of employment, failed job interviews is a part of the process. I didn't have a choice in talking about why I'm disabled in front of my classmates because in my mind I knew this would help me be safer in school, and help my classmates feel more comfortable around me. I didn't have a choice when it came to learning how to advocate for myself because I learned that's one of the ways a person with a disability survives. And yet in each of those moments I was told "you're such a strong person."

Is it because I haven't let being disabled sideline me? Haven't let it keep me at home twiddling my thumbs and pleading to the gods about why? Well, in that case everyone that I see walking about the city streets are also such a strong person. But how come no one is telling them that?....Exactly. That's what I thought too.

Maybe all of this is strange to me because it's a matter of perspective. Because I, quite frankly, do not know of any other such life than the one I am doing such kind of living in.

*It's bad to make generalizations, I know. So maybe if you think my title for this post is inaccurate or just wrong, feel free to hit me over the head with your reasons in the comments!*

1. Don't judge by the picture.
Raise your hand if you've been told "well the x-ray doesn't show a break..." or something similar? Exactly. We know there's more than meets the eye whether in the diagnosis of a fracture, or in meeting someone else, or when we pick up a book. There's always something more and while we might not always be patient about it, we're willing to bet that there's something else waiting if we give it a chance.

2. Time is the surest medicine.
Sure drinking milk can't hurt (unless you really can't digest milk), loading up on calcium pills, and doing everything your physical therapist tells you will help.. but many things somehow right themselves on their own schedules and routines. My body healed when I was downing another glass of milk and while I was doing homework in bed; it was doing its magical thing while I was going about my day; it didn't really need my nagging for it to pick up its mess while I was cleaning my room. Funny isn't it? How the most reliable thing our body needs isn't really something anyone has anyone control over? Time.

3. Don't pat me on the head.
Because just don't. (Unless you are 80+ years old, somehow related to me, and don't speak English or any other language I also speak... maybe I will allow it. Maybe.) It's like this: Some people have ceremonies like a quinceañera, or maybe a bar- or bat-mitzvah, or others might be given car keys as some kind of ritual acknowledging they are young adults. Many people with O.I. go through a ritual where the moment it is like so not okay to be patted on the head is a coming-of-age too. Most of the time there is no party or big hoopla, or even presents! It's just a look, a tightening of the gut, an eery clench of the jaw, the horrified thought: what the hell was that? And that is just one of the ways we know the kid-stuff is like so, totally, absolutely, positively over. 

4. "Yeah, I get that a lot."
Maybe it's the gazillionth time we are asked that question but most of us figure out some type of 'fall-back' answer. The question could be: "why are you so short?" "Why are you in a wheelchair?" "What happened to your leg?" "Why is your head like that?" "Why do you sound so young?" But we all eventually figure something out, something to say - an answer we use and reuse. It's not because we are necessarily bored by the questions, but it's because we become so confident and proud of the way we live our lives that explaining that small part of it isn't really an issue.

5. I'm not stubborn, I'm just right.
Don't try to tell me that tractions are the way to go when I have a fracture. It might be for you, and that's all well and dandy for you, but not for me. Don't try to tell me that I should just get the anesthesia through an IV and not the mask, because that's just not how I roll. And definitely don't try to tell me that weather isn't a factor in my bone pain because I can be more accurate than the weatherman! We just grow up knowing things about ourselves that others just don't. And maybe it is a fear of the potential pain that might be involved, but by golly we are going to stick to our guns when we figure out the answer.

6. Little kids just 'get it.'
I have yet to have a young child come up to me and talk to me in that honey-gushing-squishy-wittle-crouch-down-to-me voice. Sure, maybe it's because many of them are around the same height I am. That's not the point. The point is, there hasn't been a kid who has been condescending to me in the way (well-educated) adults have. I might look small but there is something in their stares that has told me they get it. It's like oh, you're small too but you know things that I don't. It is a look that confirms my size has no bearing on whether or not I can say the alphabet forwards and backwards, or whether or not I can help them tie their shoes, or get them out of a stuck zipper. Sometimes I wish adults could grow down a bit, y'know?

7. Breaks don't brake us.
While I don't wish it on anyone, many of us will have those fractures that leave us horizontal for days. The kind of fractures that have our stomachs in knots from the pain medications. The kind of casts that leave us so stranded that we need assistance just rolling over. But what I do wish on everyone that such breaks don't put the brakes on our lives.

8. Staring at me is not staring in me.
There's the side glance, the not so subtle corner-eye-ball, and the deer-in-headlights gawk. They are all varying levels of awkward and depending on our mood that moment exhausting, or just totally whatever. No matter how hard the other person might be scrutinizing though, whether through some x-rays or just passing by us on the street they can't ever get inside of our heads. And maybe that's a good thing, for them!

9. Trying again has more to do with the trying.
My first fall off of my tricycle resulted in a broken arm. And I was indoors, racing around my house! Yes my parents bought me a new one, the kind with a seat that had a back to lean against, and handle bars with better grips to it. But still I was terrified of riding it, the memory of breaking my arm was still fresh and I was not convinced this bright new pink bike would prove fracture-less. The thing was that it wasn't. I did break my leg (or maybe it was my arm?) from riding it. That time I was outside! The thing is that yeah, we get it, there will always be other opportunities. But it's the trying that's tough, the trying that allows opportunities come again and again.

10. It is easier to be different than be uncomfortable.
I don't know what there is to say about this one because maybe it's this one that is newest for me. But I will grudgingly admit that all through high school I spent so much time and energy trying to be less uncomfortable with myself. Because the thing is, difference is something someone can accept but discomfort leaves a person in limbo - always working to resolve the problem. We can also look at it from the perspective of someone else who might be uncomfortable with our differences: they are the ones left with the confusion and questions as we just continue with our lives.