Showing posts with label disability assumptions. Show all posts

This entry comes mostly because I wanted to know what it was like.

There are unspoken assumptions that, as someone with a visible disability, I have to 'contend with' on a daily basis. But what about those who have assumptions that are even less spoken of, that may be completely mute until there is clearly evidence of pain? And even then I imagine that there are assumptions that serve to belittle, dispute, and write-off that individual with O.I. All because why? Because they have a 'less severe' form of the brittle bones condition?

I am someone who considers myself with a less severe form of OI type III. Because while I spend most of my day in either a power or manual wheelchair, I have had fewer surgeries and other respiratory problems than many others with OI type III or IV. I'm able to stand and walk with assistance of objects around me or a walker, I don't have a rod in my spine (only in both of my tibias), and the only daily medical procedure I need to remind myself about is to charge my power wheelchair at night.
But medically I am not on the scale of 'less severe' because I have very obvious bone deformities and my mobility is calculated as having to spend whatever percentage of my day in a wheelchair. Medically someone with a less severe form of O.I. might be of average or "near-average" height. That individual doesn't have an obvious barrel rib cage, they might not require the use of a mobility aide, and might have a few dozen fractures in their entire lifetime. And because they might not look disabled I think there are a couple liberties I am able to take that they are not:

I do not have to worry about people looking at me funny when parked at a handicap spot. I do not have to do much explaining or carry around a letter stating "the official diagnosis" when I go see a new doctor. Although going in to a crowd of people isn't the safest, 90% of the time people will get out of the way because they are aware of my wheelchair. Having a visible disability means that there are things that I don't really have to explain, and for better or worse - I'm sure it has saved me some amount of physical pain and broken-record explaining yet again.
For people without visible symptoms of O.I. or any other disability I am under the impression that 'coming out' as a disabled person is a wholly nerve wracking process. When I talked to my elementary school class about it there was no question about "Why is Sandy talking about why she's different?" It's obvious why, they could see it!
For an elementary school class it might be hard to wrap young minds around the idea of: if you can't see something, does it really exist? Isn't that just imaginary? And if it only exists sometimes because you can see it sometimes, how does that change things? Is it easier to forget the disability? Because I sometimes forget the presence of my wheelchair and my friends do too, but someone without a visible disability - 'forgetfulness' could almost seem like an outfit choice. Sometimes you see me wearing my watch and sometimes I forget and leave it at home.

And it seems incredibly unfair to me that the more others might 'forget' about their less-severe form of O.I. the more that person needs to remember. The more that person might find themselves needing to remind, re-explain, insist, prove, 'come-out' as disabled again and again. But then I am sure there are those moments when their 'invisibility' is a privilege, an undercover passing as just one of the others because I think that would be easier?

Maybe I'm totally wrong about all of this? Because I would really like to think that we are the ones who choose what it means for the things people see about us.

I'm just going to go ahead and make the assumption that you, dear-questioner-of-my-walking-abilities, has no concept of what "little" actually means. I'm so glad you asked because I'm more than happy to explain!

Little isn't something that can really be measured in inches or feet, so much as it is lived in years as someone who is a mostly-functioning 3ft tall adult. Little isn't something that can be sized up in your weird corner-eye glance, it's something that needs careful scrutiny on an x-ray for that tiniest sliver of a fracture. Because that tiniest sliver can actually be causing a very big pain. Little isn't something you can purchase and wear when you buy clothes from Gap Kids as a college student, it's just a paradigm and a frame of mind that we decide to put on ourselves. And just trust me on this one - this frame of mind isn't really a one-size-fits-all garment. Actually, you need to be a very big person to understand what "little" really means. It's kind of like how you need to experience sadness to understand what happiness is all about. Get it?

The first time I walked I was around four years-old and had already read my first beginner's chapter book: Amelia Bedelia! As I stood between the metal railings, feet planted in "proper walking position," legs strapped into my braces, and my physical therapists' hands on my waist - I had no concept of what "walking a little bit" meant. I understood walking, I understood standing, I understood that mom and dad were - needlessly - nervously standing by, because as I understood it: walking is something everyone does and this is not a big deal. So I walked: one foot in front of the other, the way I had seen my older brother and my parents, and my friends at school walk. I copied what was around me because that is how children first learn. As far as I had observed at that point, no one around me was concerned about walking "even a little." They just did it.

That first time I walked a few steps and then a few more, all the way to the end of the railing when I fumbled a bit to turn around. Did my upper body turn and cross over first? Was I supposed to reach one hand over to the other side of the railing? Or did my feet turn sideways first? Actually - back up. Wait a minute. Before all of those questions of "how do I turn around? And what do I do now?" came careening into my brain, I thought "Wow cool! I just walked!" My palms were sweaty, I probably looked a little robotic in my uncertain positioning, and even though I couldn't see my physical therapist behind me - I knew that she was beaming. After that first session was over she probably wrote in her physical therapist patient chart: patient walked with the assistance of bars and long leg braces. Distance covered: 5 ft. 

I'm pretty confident that she didn't check off on her charts:
X  Patient Walked A Little.        Patient Walked A Lot.
But I'm not a physical therapist so what do I know?

So as you're standing there in the aisle of the airplane or bus, or if you're standing in front of an amusement park ride, or maybe you're on the deck of a swimming pool, or you're standing at the foot of my hospital bed, or you're on the dock in front of a boat - and you ask "Can you walk even a little?" Please don't be offended when I look back at you baffled. I just don't understand your question. I mean, I get what you're asking - but I don't actually * get * it. Maybe it's because you are uncertain of how to transfer me, which is fair and I would be happy to help guide you. Maybe it's because you don't want to assume that I can't walk at all because for many people translates into I can't do anything at all. Or maybe you are uncertain of how much help you should offer, and don't want to come off as intruding on my stubborn independence. Thank you, I appreciate it.

(Don't even get me started on how it must feel for those of my friends who can't walk even a little! This is one of those rare moments in the world when something "even just a little" is not taken as an easy feat, it's not taken as anything even close to 'cute,' it's probably not even taken as anything little at all! For someone who can't walk, your 'little' question may be an unwarranted reminder of a BIG 'failing.' Your question may have just driven a big awkward spear into where you meant to inflate a raft). 

But for someone who has never put her steps forward (or backwards) in life in terms of little - I hope you understand why your question comes off as slightly jarring and a little awkward. Does it make a difference to you whether or not I can walk a little after having rod surgery? Or a lot after breaking my femur? Are you going to record the "little-ness" or "big-ness" of my walking ability in a patient chart I don't know exists? Why should we put a 'size' on our steps at all? Why can't we just accept it without the vague restrictions and fuzzy borders?

Those are my questions to you and when you've answered me all of those, then you can answer for me this question: "Can YOU walk even a little?" And let me know how it feels.

If you think your friends/families/other networks might appreciate this, feel free to share this with them! ALL of the content and posts on this blog are always open for sharing -- the more the merrier :-)

Rarely do I ever write about something that is current in this blog. Usually I'm drawing from old memories, face-cringing injuries, or from the endless pool of awkward life events I have stored up inside this quarter-century body. Today something happened that made me smile so broadly inside that I thought my chest could wrap its flimsy little rib bones around the whole Earth. So I wanted to share it:

Just a side note: I don't like saying the word 'jobs' 'volunteer opportunities' 'internships' or 'the regular ol' 9 to 5.' Instead I'm more apt to use words like 'side gigs,' 'projects,' 'a chance at world conquest' or 'opportunities for mind blows.'

One of my gigs is at a tiny, and I mean so tiny it's currently run by one 22 year old woman, and a grad student - homeless prevention organization. Some of you know that homelessness has long been an intellectual curiosity of mine, and it has since moved far beyond the realm of the classroom to real-life action. At this tiny organization is where I get to experiment with those curiosities. And yes, it is just as dangerously thrilling as it sounds. We work with individuals and families who are either already homeless or on the verge of homelessness, and these days it is the latter that has seen a piercing spike in numbers. Due to the economy and difficult job market, thousands of people are struggling to find a job to pay for the mortgage, make rent, put food on the table etc. The swing of living pay check to pay check offers little to no stability for families caught in this momentum.

All it takes is a sudden sickness or accident and as many of us know - life gets turned upside down. Soon we are not only scrambling to afford the everyday living expenses but also medical bills, transportation to doctor's visits, child care, gas, medication etc. Unfortunately for many those everyday bills are oblivious to our other life circumstances. When rent is due it's due, very few landlords have the compassion or logistical ability to consider a very sick child, or the fact that the head of household has just lost her job. Soon these are the folks who find themselves staring down an eviction notice and homelessness. All of this happens within days, sometimes within hours.
At this tiny organization that began in 2009 we have since prevented homelessness for 300 families, and been able to raise $300,000. How is it done? What makes it possible? Sorry -- that'll have to be for another post. But of the sometimes 5-8 different projects that I've got going on, this remains my proudest mind blow opportunity. I love what I do there. And to be able to say those six words is something I know I am incredibly fortunate to utter.

This tiny organization is mighty. It matters to the community and city we live in. Because people and families believe that they can make a difference, and what a difference it has made! I am lucky to even be a part of it, to be a part of the journey's the families are all braving as they move forward towards their goals. Most of the time those goals are as simple as "we want our daughters to live in a safe neighborhood, to do well in school, to not live in the shelter system, and to be proud of their parents." Think about it, how different are we from each other? Isn't that what every parent wants at the end of the day?

You would think that would be enough to make any person's day bright. And it does make every minute of my day worthwhile, challenging, exhausting, stressful, and driven. It keeps me moving forward. Over the past year that I have been involved with this organization I have become close with the 22 year old woman who makes the entire ensemble happen. K is wise beyond her years, charismatic, warm, sensitive, resourceful, creative.. I could go on.
Sometimes I worry whether or not I am seen as 'capable' in the professional world. Does she really think I'm able to do this? Is she just going along with my crazy ideas because she wants to give me a chance to learn? Does she see me for what I am able to bring to the table everyday? These are questions that spew from my brain because there are often moments when I am uncertain about my own self-confidence; this is particularly true in the work place/professional world where I am only just beginning to find my footing and build a reputation for myself. Am I doing the right thing? What are the assumptions people are making about my abilities? How do I present myself as an independent-thinking professional who uses a wheelchair? ...The questions are endless.

Today we were on our way to lunch. Recently K had injured her ankle in a trampoline dodgeball game (exactly what it sounds like), and was hobbling around the office on crutches. I told her that we should just get lunch delivered but she insisted that we "just go around the corner, there's a restaurant I want to try out." So I shrugged and trusted her judgment of how much hobbling on crutches she really wanted to do and off we went. We got to the restaurant and K went to go look at the menu posted on the window, from the window I could see that there were stairs leading into the restaurant.
In my mind I assumed that K had planned this in advance. (I mean the woman runs a homeless prevention organization for cryin' out loud!) I assumed that there was a wheelchair accessible entrance somewhere around the back, or that there was an elevator in the lobby that I just hadn't seen yet.

"Okay let's go in!" She hobbled ahead and we stood at the entrance staring up at the flight of stairs. That was when I realized that it was happening again, and my heart began to creep into a slow smile.
"Umm is there a wheelchair entrance somewhere?" I asked.
K turned to look at me, eyes wide in total shock and perhaps slight embarrassment --
"Oh Yeah... I hadn't even thought of that!"

All those thousands of questions about my self-confidence in the professional world evaporated the second she admitted her oversight. When will I learn that people see me for what I offer and not for the wheelchair? Or maybe I should learn how to be selective in who I include in my life, or learn how to collect those individuals to my real-time on-going life stream of adventures. Something tells me that I probably can't learn how to do this in a book. I'll just continue doing what I've always done: give it my all in everything I involve myself in and let the rest settle itself. 

There are a handful of sayings I get told a lot that I rarely verbalize a response. Mostly because I am afraid it will sound rude, and partly because I'm not sure if it's inappropriate. I am also still trying to figure out that fine line between other people's ignorance vs. their way of caring. The last thing that I would want to do is to dash off someone's attempt to care despite the fact that it may come off as ignorant.

Anyway, here we go:

Them: I wouldn't be able to get out of bed if I were you.
My Thoughts: Well, after that comment I wouldn't even call myself a human being if I were you!


Them: You are such an inspiration to be able to do all that you do.
My Thoughts: Not really, I'm just willing to work and try a little harder. And more than willing to fail. (<-- that's a secret between you and me)


Them: Aww sweetie, are you okay? Oh you poor thing.
My Thoughts: I'm fine, but you should get your head checked out. I'm not a lost puppy in the rain.


Them: It must be so frustrating for you to have to deal with this.
My Thoughts: To deal with your assumptions? Yes. To deal with my life? On the rare occasion. I mean, I've made it this far haven't I?



Them: I can't imagine having to face the things you must face everyday.
My Thoughts: I can't imagine having such a narrow perspective. But anyway, aren't we all living beneath the same sky?

This might come as a surprise to some, especially given the fact that I have a public blog - but I am actually a fairly shy person. It may take a whole semester of school before I start making friends. It'll be more than a month before I'm comfortable in any work setting. I'm not likely to strike up conversation with fellow commuters on the train (no matter how many mornings I see the same faces). I would much prefer a party with 5 of my closest friends than a house party of 20+ strangers and 1 friend.

With that in mind, when people on the street or even acquaintances ask me why I'm in a wheelchair - you can bet that I am shy about my response too. It usually goes something like this:
Person: So can I ask you a question? Why are you in a wheelchair?
Me: Uhhm, well I have this thing.. um basically it makes my bones brittle. I fracture a lot. 
Person: Oh so you can't walk at all?
Me: [Internal Sandy monologue: is this person an adult? Is the person a child? Will I see this person more than five times in my life? Is this person also disabled?] And depending on those answers I will either say:

1. I was born with brittle bones, it's genetic. I can walk but I need to use leg braces and a walker, or crutches
2. I'm able to walk but I need help doing that, and a wheelchair makes that easier for me
3. I have this thing called Osteogenesis Imperfecta, brittle bones. It's genetic. I can walk a bit but the wheelchair just makes my life a lot easier. 

The second we entered the Children's & Young Adult reading room I'd squirm out of my dad's arms. At that point I was still about the size of a three year old but was actually between the ages of seven and ten; my manual wheelchair wasn't yet fold-able and so my parents thought  it easier to carry me everywhere in their arms. They'd set me down on the carpet and, as if I were in my own home, I'd comfortably do a crawl-hop around the bookshelves - pointing to the ones I wanted as my mom or dad took them out for me.

When I was much younger my mom would bring me to the library with her. Every week we'd come and she'd set me down on the soft red carpet, showing me how library books were organized by author last name, and how to tell which books were appropriate or good for me to read.
"You see how this label has the 'An I Can Read Book' on it? Those are the ones you should choose." Soon I would learn to not only find those labels, but also recognized the pictures on the cover and then the words of the title - unsurprisingly many of these books turned out to begin with Frog and Toad....
"Do you see this shiny medal sticker on the book? That's also a sign that it's a good book." Most of the time while she was doing that I was clambering on top of the over-sized stuffed Curious George that sat slumped in the corner. That was my routine every weekend, from when I could first confidently crawl-hop around until at least the first grade.

As immigrants to the country my parents didn't know what made-up the canon of children's literature in the U.S. So as I got older they were unable to choose books for me, couldn't decipher which were the 'good books', but still they would insist that I read all the time. Soon they entrusted my literary education to not only my teachers at school, but to the librarians and the reading lists organized by grade, kept filed away in a milk crate. My dad would pick a list and I'd simply make my way down it, crawl-hopping around to each of the towering red shelves. I'd crawl to the end of each shelf and from the ground look up at the index card taped to the side, following the instructions my mother had taught me years before about the alphabetization of author's last names.
Thinking about it now it must have been quite the odd little sight. There was me on the ground bunny- hopping around. My dad standing behind me with the list in hand following my lead, usually holding one of the little reference pencils (the ones that never have erasers) to cross off each title that I found. If I was only borrowing any less than four books I would shove them along in front of me, pushing them ahead on the floor like a stack of hockey pucks and then bunny-hop towards it. Being low to the ground I never paid any attention to the other adults around me, and the librarians all knew my name and were used to my 'peculiar way of doing things,' in fact if anything they loved my act! But once in awhile I would see the reaction another adult had whenever they saw what was going on,

"You know, you really shouldn't let her do that." I recall one lady telling my dad.
"Pardon?" My dad had set the stack of library books by the check-out counter and had picked me up while we stood in line.
"Why would you let your daughter crawl on the floor like that? It's dangerous and probably not very clean." She continued in one of those obvious-parental-styling voices.
"She's fine. She's not as young as she looks, she's eight, almost nine. It's not like she'll eat things off the floor. This is just the way she does things. She doesn't bring her wheelchair to the library." I watched my dad trying to explain and could see his words bounce off her face like rubber balls off a wall. It was pointless. Even at that age it was clear to me that she would never understand even if we spent all day explaining. And, perhaps more importantly, it was also clear to me that it didn't matter whether or not she understood my 'way of doing things.' My dad explained all that he felt he needed to explain, he spoke truthfully and defended his daughter's differences. That was all the situation required and as his child I learned that most of the time you won't ever get people to see your perspective, the point was that you tried and gave it your honest effort. And then you continue on doing your own thing because it works for you. At the time bunny-hopping and crawling around the library was what worked for me and that's all that mattered.

The line had moved on and it was our turn to check-out our books. I tugged forward and leaned towards the smiling librarian who was waiting for us, like a horse following the pull of its reins my dad walked up to the counter.
"Hi Sandy! Did you find everything you were looking for today?" I happily nodded at her and watched her scan the books, sliding it over the mysterious metal scanner and into a plastic bag. As my dad hoisted the bag over his shoulder and held me in his other arm I waved good-bye,
"Have fun reading these, I can't wait to see what you get next week!" 
--
Side Note: 
I can't stress how important reading is for children. Literacy and education are probably among my top three most important 'causes' in life. Every time I write another blog post I am always humbled by the comments and feedback I get, sometimes they are about the tips I offer and other times about the stories I share. Whenever someone compliments me on my ability to express myself though I always think back to those days that I shared above. Had I not been pushed to read, read, and read - this (among so many other things) probably would never have been possible to begin with. SO PLEASE, READ & READ TO YOUR CHILDREN!

If you've been following the blog for some time you may remember that I have had various "helper persons" from pre-school till 9th grade. At the start of 9th grade I got all teenager-y and stubbornly wrote off my aide and won the case for my independence; from that point on I was deemed capable / responsible enough for my own well-being and have not had an aide in the classroom since.

Fifth Grade, I think?

• Have a sense of humor that's like mine! 
• Be involved in what's going on in the classroom
• Have a fun personality but also know when an authority figure is needed. Secretly I do expect my classroom aide to keep me safe when one of my seemingly "good ideas" is not so good.
• Back-off when friends are around
• Allow friends to help me as appropriate. The truth is that as young kids grow-up they will increasingly realize that they will be the ones who need to ask for help, and many times that person may be their peer or colleague. Starting this early-on is only planning for the long-term!
• When I am hesitating about doing something that involves physical activity, help talk me through the decision process
• Trust me enough to have some time alone; my aide shouldn't be a literal shadow!
• Respect my curiosity
• Respect and help me during uncomfortable situations. No kid willingly wants to admit in front of his or her friends that they need help going to the bathroom or getting changed for gym class
• After a certain age, let me tell you when I need help
• Help me explain my disability to my friends in an appropriate manner and when the time is right
• Realize that if I want to do something that my aide usually does, this is not a sign of my trying to offend you but instead I am just trying to learn. Help me realize what it is I need help with, and what I can do with assistance
• Never assume that I just can't do it. Allow me to take the first steps in trying and then assist me as needed

Having a rare condition means that being noticed is just a part of the package. If I were a product on a store shelf I would have a WARNING label and it would probably read something like this:

Hey everyone, I had a great experience during my week away and I hope you enjoyed the posts from this week. Next week I've got an exciting announcement and will write a more detailed entry about my time in Maine at Explorers Camp! If you missed any of the posts while I was gone catch them here:

• Monday: Before I left for camp I wrote a pre-camp letter  where I shared my excitement for the adventure to come

• Tuesday: In the process of writing this blog I have found that I've been unintentionally giving advice about what I would do if I had an O.I. child

• Wednesday: This was an entry where I could share a bit about me, thanks for the questions!

• Thursday: There are times when P.T.'s can be like physical terrorists to me! But in the end I have come to learn that rehab time is vital to the healing process

• Fracture Free Friday: This week's question dealt with young children who find my appearance to be a little "off" or different. What do I tell them?