Perfectly Imperfecta

A Cup Holder that Holds too Much or Not Enough

2013-10-13T21:33:00.001-04:00

I recently got a cup holder attached on to my power wheelchair while attending the Boston Abilities Expo. To be honest I'm still not sure what the whole shebang was, and the one I'd most recently attended was my first experience. And to be even more honest? I'd been so nervous attending the event I'd dragged one of my friends from school (she was not disabled) to attend it with me. "Look so the way people at work described it to me.. it seems like it's .. just some kinda freak show event for people with disabilities. With all kinds of disabilities and they go and look at .. umm.. stuff. Also I need to meet Miss Wheelchair America at this thing, so like could you just.. y'know be there with me? Help me not freak out." And because my friends are always supportive of my *charming* awkwardness(?) she happily accompanied me.

Anyway here's the picture of me getting the cup holder attached to my Permobil wheelchair. The tech guy putting it on was described to me as "the MacGyver" of the Permobil folks.

Fast forward a few weeks and the cup holder has experienced many a Starbucks, independent coffee brewers in Cambridge, and too many cold brews. And of course because it's fall I've thrown in a few hard ciders in there as well. It's even managed to hold my over-sized aviator sunglasses, my subway metro card, and my terribly embarrassing non-smart-phone phone. It has served its function well and I'm happy with it, delighted!

"Hi sweetie, here you go dear. God bless you now." The woman shoved a dollar in to the cup holder as she passed me.
I was waiting in front of the subway elevator; dressed I thought to the nines because I was on my way to a recruitment interview - meeting the potential employer at a 5 star restaurant. I had my blazer on! The one with the buttons painted in gold and they had the image of anchors on them. I had shoes on. Not sneakers, not boots. Shoes! The kind that I would never wear otherwise because they're just so not efficient but I wore them that day because since when was going to a recruitment event ever efficient? They were the kinds of shoes that I had to intentionally look for to make sure they did not have pink fluff, bedazzled beads, and My Little Pony emblazoned on the sides. I wore intentional shoes with great intention! And all it took was one woman's crumpled dollar in my cup holder to cheapen my whole existence.
"No, no I don't want this. I'm fine." I said to her quickly. I plucked the dollar from out of the cup and held it out to her.
"You keep that dear. That's for you honey." She smiled at me. No, actually she smiled down at me. In that way where the corners of her eyes squinted and pinched so that her webbed wrinkles looked like they could almost form skin-toned asterisks. I wanted only to stretch them out wide in hopes that maybe she could see, see that I had dressed with purpose and intention, that my cup holder was going places with me in my future. That it was not just to sit there waiting for a hand-out in the present.

From the corner of my eyes I saw that the elevator to the subway rising to the street level. The dollar bill was still held between my thumb and forefinger and at that moment I let my fingers go, the dollar bill started to fall from my hand --
"No I'm on my way to an interview. To a recruiting event! This is a cup holder for me to put drinks in. This isn't a cup holder for you. Have a nice day!" I called after her as I rushed inside the elevator and slammed my fingers into the door close button.

Some days I have time to explain my intentions to people, most days I don't. Most days I'd rather just plow ignorant people over, run them over twice -- the second time to make sure they really get the point. Well, this lady who shoved a dollar in my intended cup holder caught me on one of those "some days" and that's the best I could do on that particular day.

Peek into my Cubicle: When I am vs. When I am not

2013-10-02T20:53:00.002-04:00

I feel strange about writing a post about the comparisons between working in an office where I *am* the sole wheelchair-user vs. working in an office where I am *not* the sole wheelchair-user.. because y'know like a shit ton of people don't have jobs right now.
Before I go any further though I have to admit that as someone who is going into public interest work as a career, what's going on at the federal level is equal parts devastating and motivating. The situation at hand says only this to me: things are a mess, there is work to be done - good work, and I am grateful for the educational and professional opportunities I've been granted because instead of throwing my hands up in the air I find myself wanting to participate even more in what is going on.

So, there's that. Now ... back to my cubicle. For each of these observations I'm listing I am going to have scenario A: when I *am* the sole wheelchair-user in the office vs scenario B: when I am *not* the sole wheelchair-user in the office. Let's get started.

1. Accommodations.
Scenario A: I have noticed that typically in these work environments (which I have had more years of experience with) for about the first two weeks to a month, my other colleagues around me will repeatedly ask "is there anything else we can do for you? Is this desk set-up working for you? Will you let me know if there's anything else that you need? Can you reach everything okay?" They check-in about this with me repeatedly. Do I need anything from them? No, usually I don't. Are they aware of me as an employee whose day-to-day job might be easier if ... say..I didn't need to stand on top of my wheelchair to get my mail from my mailbox? The jury is still out on that one.
Scenario B: I vaguely remember being asked if the desk was at the right height, or if anything needed to be lowered. But for the most part there was an understanding that the other staff around me could already tell/knew what accommodations I would require - and therefore pre-arranged it, or they knew that I would just ask for it myself. I will admit that it wasn't until I had the experience of working in Scenario B that I felt comfortable finally telling my officemates "for the love of god do not yell to me over the cubicle wall because I don't know what you're saying, and I will just ignore you. I lip read."
Conclusion: In one instance it appears (from my experience) that the mentality remains as -- what else does Sandy *need* in order to do her job? In the other instance the mentality is -- we see you as an employee working for us with skills and talents, here is your space that is equipped to meet that expectation.

2. The other chairs on wheels.
Scenario A: Why is it not universally understood that office chairs made for today's working world are made in factories that put wheels on them? I do not want to drag chairs out of the way for each weekly staff meeting Every. Single. Time. Did anyone learn anything in Kindergarten? Do we not remember that rule of pushing your chair in after you get up? Should it be amusing to my colleagues when I need to play "bulldozer" as I push furniture out of the way? No. Apparently not. And definitely not.
Scenario B: There are enough chairs on wheels (excluding actual wheelchair users) to form an adaptive conga line. I might suggest that as a bonding activity for our board retreat this winter. But seriously, this minor detail makes the simple act of *being* in the office a more accessible experience. If there is a chair in my way I push it aside and off it rolls! If someone else is joining in a conference call at my cubicle, they just roll right in.
Conclusion: Yes this is a pet peeve of mine that might be mine alone, but believe me asking someone to move the chair or adjust furniture for you repeatedly is like playing musical chairs for the 100th time when you're the babysitter and the toddlers look up at you in awed delight. ..And you pretend to be just as excited.

3. Travel logistics.
Scenario A: I am responsible for my own logistics. "Sandy the staff are taking a cab to meet the client we weren't sure if--" before they had even finished I said "I'll take the subway and I'll meet you guys there." Who is calling to see if the client meeting place is accessible? Me. "Yelp said that it was accessible Sandy." "Okay cool.. let me just.. actually now go and find the accessible entrance.." Is it necessary that they'd paid for first class? Not really because .. umm.. leg room isn't really an issue for me. And calling the attention of the flight attendant sure as hell isn't a problem when you're the first person on the plane to begin with! But of course sometimes there are perks, and this girl never complained about it!
Scenario B: First of all -- I have gone to parts of the city with my supervisor when meeting people that I never knew existed. Down the public alley to avoid construction sites, or taking the subway to the next stop because it is a smoother wheelchair ride, or clambering in to someone's car knowing I will not need to suggest "you might need to fold your seats down.." because they've already done it without instruction. Secondly, because there is a companion during such adventures I am always learning something new that, when the next time I'm out and about alone, am able to put in to play!
Conclusion: Birds of a feather fly better together! There isn't much else that needs to be said.

4. Dropping things.
Scenario A: Wheelchair users usually have at least one hand preoccupied with propelling themselves in motion whether it is manual chair, or power chair. With the other hand we are creatively jamming things between fingers while pushing, or stuffing things between our legs, hanging things off of handlebars etc etc. The whole ensemble means that dropping things is going to happen, maybe more likely than it is for our bipedal cubicle mates. But when I drop something in Scenario A's office it is almost instantaneously picked up, or someone has rushed to my side to pick it up for me. It's like I have a personal picker-upper in my back pocket that just detects when something has landed near me. "Oh let me get that for you!" "Here ya go." "Oh I've got that." "It's okay I can pick it up." As I sit there, probably already looking to see what is next on my check list of things I need to do.
Scenario B: When things drop either I am picking it up (by hopping out of my chair and then climbing back in), or it gets left there until the cleaning crew comes by to place it back on our desk, or dumps it. Of course I'm not saying that no one is picking anything up, but it's less of a frantic urgent moment in this environment. Things are going to drop, if we don't need it right this second it will get left there or until we ask someone to get it for us. I have dropped copies by the copy machine before, looked at it on the ground and shrugged because in my head I think yeah, I've got enough copies already someone else can use that for scrap paper. Or if my colleague who uses a wheelchair has dropped something I might ask "want me to get that for you?" And sometimes she has said "nah it's okay." Or she'll say "yeah actually if you can reach it that'd be helpful."
Conclusion: In one setting the assumption is that when something is out of line or has gone awry, it needs to be set back in place by someone who can do it in a blink-of-an-eye. In the other scenario it's an understanding that comes with being in a wheelchair, and being around others who are also wheelchair users.

Do I have a preference for which work environment I like better? No I don't. I like the one that doesn't block social media sites, the one that has free coffee, the one that has a clean fridge, the one that lets me tack a picture of Ryan Gosling to my cubicle wall, the one with the giant aquarium of tropical fish in the lobby, the one with the nap cots, the one with the break area filled with candy and then beer on Fridays, the one that has cubicle nerf gun wars, the one with post-it notes in every color... I prefer the work environment that appreciates what I do and is willing to work with me in figuring out how to do it best.

Book Review: Geek Love by Katherine Dunn

2013-09-09T11:25:00.000-04:00

Remember when we were told fairy tales or fables that had some moral lesson embedded in the story line of prince-princess-magic-fairy-talkingAnimals-AlwaysSomethingInThrees-evil-witches-and-castles? The point of these stories was mostly to help young minds wrap around weightier life lessons of morality and issues of sound character?

In some ways this is the effect that Katherine Dunn's novel Geek Love had on me. Sometimes we have to go far askew into the land of fantasy where boundaries don't exist; because in the realm of fiction we never ask how that could be probable in order to understand a small token of our own realities.

"People talk easily to me. They think a bald albino hunchback dwarf can't hide anything. My worst is all out in the open. It makes it necessary for people to tell you about themselves...Just being visible is my biggest confession, so they try to set me at ease by revealing our equality, by dragging out their own less apparent deformities" (156).

It's these kinds of narrative moments revealed by the characters, in this case Oly the narrator of Geek Love, that shocked me. How could a circus freak that doesn't even really exist have gotten that kind of insight?! How did she so matter-of-factly put into words what I have experienced in public time and time again? How did her fiction mirror my reality with such precise accuracy that were it not for the - at times - confusingly organized plot line, I almost believed wholly hook, line, and sinker?

Let me now explain why I said ALMOST believed.

The main characters of this novel are the Binewski family members. Their mother (Lil) and father (Al) intentionally bred offspring through a series of risque experimentation. Their goal? To "breed his own freak show...."What greater gift could you offer your children than an inherent ability to earn a living just by being themselves?"" (7). So while Lil was pregnant with each of the children husband and wife would play 'mad scientist' with various drugs, insecticides, and even radioisotopes. The result: Arturo the aqua boy, siamese twin sisters Electra and Iphigenia, Oly (who describes herself above) is the dwarf, and then the mysteriously outward-appearing "normal" Chick.

And when the Binewski's goal was meant to "breed his own freak show" .. this is not the same way most of us now use the term "freak show." I mean they were a traveling circus freak show in caravans, tents, fire breathers, popcorn, and the whole nine-yards.

I know that there is a lot of history that is accurate in between the lines of Dunn's novel. That these traveling 'freak shows' existed at one point is one such fact; that people with 'disabilities' or more accurately deformities (or just plain looked 'off') were put on stages to be gawked at for entertainment, actually did happen. And even today it still happens!

But this is a story that, if you are patient enough, and have a mind that's flexible enough, (particularly if you are disabled) that speaks beyond the incredibly bizarre and twisted show life of circus freaks. As Oly says at one point "Those poor hop-toads behind me are silent. I've conquered them. They thought to use and shame me but I win out by nature, because a true freak cannot be made. A true freak must be born" (20).

Where the story's organization confuddled me was that it's a story embedded in a story. Maybe I wasn't reading carefully enough, though the 20-some-odd post-it-notes sticking outside of the book would beg to differ, but I didn't realize that this was the case until 3/4's of the way through. At this point readers come into the complexities of family relations and we are immersed in the moral conflict between Oly and her daughter Miranda. Miranda who doesn't realize she is Oly's daughter. Miranda who was not brought up as a child to make a living from her existence. Miranda who is shocked when she hears Oly tell her ""I've wished I had two heads. Or that I was invisible. I've wished for a fish's tail instead of legs. I've wished to be more special"" (34). Miranda was born with a tail and - this is where the book expands in both breadth and depth: the multitude of attitudes and perspectives towards their own physical abnormalities within a family.

Just as this is where the story begins to get complex, it is also where I - as a reader who is disabled - might imagine that those who are not disabled can begin to empathize with the characters --

On one end of the spectrum we learn about perceived physical differences and how all of its 'glorified' strangeness impacts a person: "Arty said, "We have this advantage, that the norms expect us to be wise. ...And the more deformed we are, the higher our supposed sanctity"" (114).

As a reader I interpreted this with the 'pedestal effect' that some people with disabilities place themselves upon.

On the other end of the spectrum readers are also brought into the other more complex experience of disability: "None of us had ever slept in a hotel or eaten in a restaurant or flown in a plane... And we suspected, each of us, blackly and viciously, that Papa preferred his norm kid to us. With Chick he was free to go anywhere. We could live only in the show" (87). This is the experience of 'passing' that because Chick presents with 'normative' physicalities he is able to maneuver both sides of the line, his gifts unseen by any outside of the Binewski clan.

Was this book a bit far fetched? Well of course! I knew I was getting into some crazed fantasy by page 7, but this is exactly what fiction is meant to do. It presents the extreme versions and it is up to the author to inform us something about ourselves and the lives we lead. Did Katherine Dunn do this for me? In some ways she did. I am certainly not *there* yet, or am not as comfortable with myself in comparison to the members of the Binewski family as revealed by a lot of the statements her characters make. But there is a sort of comfort I find in such books because I can go there in my brain, tugged along by the turning of each page and the stop of each dusty town the Binewski caravan pulls into... without feeling too overwhelmed or anxious to know what is the answer to this question of disability, family, and where is the line?! Because it is a book. A fiction book that will end at some point, and that is where my brain will end with it. And just maybe, just maybe.. my thoughts become a little more fluid and daring in its ability to embrace the strange.
I mean, after all those stories and fairy tales of childhood I certainly never stopped believing that three is a magically hopeful number.

An Ideal Community in the Woods

2013-08-25T12:13:00.002-04:00

Several years ago I'd written a post about going off to the Easter Seals Massachusetts Explorers Camp. Here is my letter to myself pre-camp, and then post-camp. During those ensuing years much has happened, but here's a quick sum-up of my visit last week.

Last Friday I spent a day visiting the camp, this year it was held in New Hampshire, about a two hour drive away - a drive that I wasn't doing. I was just the excited yappity-yap passenger in the back who on the way back home totally crashed-and-zonked-out from the sugar high from a McDonald's soda. (It was taller than my torso that thing.. three cheers for 'merica!)
Here's my attempt at putting sun-kissed and mosquito-nibbled thoughts into some coherency for you:

"Do you know what's in the town of Shirley?" The staff person driving asked us. I looked out the window and saw only what I'd been seeing for the last hour, the top halves of trees. I shook my head.
"There used to be a boys reform school." I arched an eyebrow at him hoping for a good story.
"... that's where they send the juvenile delinquents... " the rest of the story was not as juicy as I was hoping. Something about his cousin, and we kept cruising along and passed other random towns that all looked the same to me. I was getting antsy in the back seat and just kept chatting about who knows what. At some point I quieted my incessant chatter with a granola bar.
"Well we're just about here..." finally, the words every back seat passenger on any length of a road trip wants to hear. I texted my friends and hoped that they had reception wherever they were, and as I looked out the window I saw only an field surrounded by more trees. Where were my friends? Where were the campers?
Since the terrain was deemed a little rough on manual wheelchair users I was given access to a scooter, like the kind that I domino-effect aisles of produce with at grocery stores. (The kind that the elderly shoppers at Costco glare at me for because they think I am some bratty child using the scooter as a toy..yeah, that kinda scooter.) I became acquainted with the steering mechanism of it, and someone mentioned that we were waiting for the rest of the group to show up before we would begin the tour. The other folks in the group visiting were some mix of other Easter Seals MA staff members, and also a few board members.
When the tour finally began the first stop was the water slide activity, the young woman in charge of the activity talked about how campers were encouraged to "Try new things and make friends, and have fun.." and as she was talking I did a double take. It was R----! She'd been one of the older girls in my cabin several summers ago as a camper, I remembered her as shy and quiet, always cooperative. Her eyes fell on me in the tour group and she waved,
"Hi Sandy!" I smiled back at her, thrilled that she remembered me but even happier that she'd returned, now as someone leading other campers in various activities. That was when I was eager to not just to see my friends, but became curious to see who else had moved around within this microcosm slice of the disability community.

Because that is what fascinates me about camp. Sure I was excited to see my friends, I wanted to see the human-sized angry birds game I'd heard so much about, I even wanted to see if my old camper with the perpetual crush on that one counselor had returned...but I am not exactly one for woods, and bugs, and sleeping in strange places without access to the glow of my computer monitor. I was drawn to the visit because in my idealistic abstract mind camp is the epitome of what I want the disability community to strive towards. If I were to really push my imagination I'd even say that, in some strange cockles of my heart, there exists the fantasy that our larger society could be like that one week of camp too. It's a place of inclusion, of empowerment from campers and older counselors alike, it's where disabled and those without disabilities are all working towards that same larger goal and as a result of that collaborative environment (filled with all of the typical goofiness of any summer camp experience, and questionable food from the kitchen) -- even if you just sit and watch, as I did as a visitor for only a few hours, is a powerful experience.
For most programs I think there is a limiting sense of 'program participant' and then 'program staff' - and rarely do many organizations recognize that concept of a 'revolving door' where participants eventually become staff members. Camp is one of those programs where the resources and knowledge from campers is so dexterously utilized that unless you have the benefit of working there over several years, you might not realize it.
It's this piece that in my observations of camp that day is the linchpin that keeps this well-oiled machine running. Those campers having been the recipient of the experience then become the outlets for having their own opportunity to dispense the experience to the next generation, the cycle then continues. A community is then created, the momentum grows and that's where the excitement is! It speaks volumes about a community that it is still able to run smoothly when the knowledge and experience is passed on, this is the mark of something successful. It's successful because it is able to continue and hold true to itself.

Around late afternoon the entire camp gathered on the basketball court before we headed to the field for the much awaited human-sized angry birds game. I saw R---- and gestured her over to the bench I was sitting next to.
"Hey so I just wanted to say how happy I was when you remembered me this morning!"
"Oh yeah. I remember you were my counselor in the Gold cabin three summers ago." She nodded firmly, and I felt slightly embarrassed that I hadn't even remembered which cabin color I was.
"Yeah! And I wanted to say that I'm really proud of you, it was great to see you now leading an activity and helping other campers experience new things."
"Oh thank you, thanks. It has really been great."
"Alright well it looks like we're all heading down to the field now for angry birds. See you there?"

Everyone got up and started heading down to the field. I stayed behind for a bit to talk to the other counselors, a few of the camper bloggers whose job it was to capture pictures and videos throughout the week. One of the camp bloggers was a youth I'd met a few years ago during a presentation I'd made at the MA Youth Leadership Forum. He rolled up to me with a grin and offered a fist pump in greeting. He was eager to show me the videos and pictures he'd captured on his tablet, we geeked out and swapped some blogger tech tips. He just as soon zipped off again to head towards the field with everyone else, not wanting to miss out on getting footage of the afternoon activity.

I swung the speed dial all the way over to the right so the arrow pointed at the bunny. I revved it and raced down the rocky path that slanted down towards the water, turning my head to make sure there were no staff around to see me flying over roots and rocks. "The less time you spend over the rocks and bumpy path would probably be the safest.." said a staff person earlier when I had first climbed into the seat. To make matters more precarious one of the camp volunteers had nudged himself into the seat next to me,
"Yes finally! A woman gets to drive." I snarked.
"Okay well, just don't prove every man right and crash.." he leaned over to the other side and gripped onto the other arm rest.
"Dude quit worrying, we so got this."
After watching the angry birds game (and the actual totally sweet way cool bird launcher someone had built), it became time for me to say good-bye to my friends. They were already getting ready for that evening's activity, the talent show and smokin s'mores over a camp fire, both of which I was sad to miss out on.
----
In my mind I felt like I fell asleep right after I climbed into the car again. I woke-up somewhere along the way,
"Sandy, you missed the entire town of Boxboro! I was going to show you all the sights of Boxboro. Now I'm going to need to turn around again."
"Nooooo!" I replied sleepily from the back. But a part of me did want him to turn around and head back to camp again, though I obviously knew that was out of the question. I settled back into some state between awake-and-sleep, quietly thinking to myself about my own ideas of sustainable communities and programs.

This Other Thing I Have (had?)

2013-08-21T10:58:00.001-04:00

A few months ago I wrote a fairly personal blog entry about my struggles with severe depression and other mental health issues. The post can be read here.
I just wanted to follow-up because I've gotten lots of emails since that post from many wonderfully caring human beings. Your beautiful missives to me whether long or short, silly or serious, sad or happy, frustrating or joyous are my reminders: there's someone out there who knows you have an impact and cares how you're doing on the other side of that unleashed wave. Thanks, guys.

That's why I feel like I should follow-up on that blog entry on this marathon trek of my mental health.

I am okay.

As of two weeks ago I said my good-byes to my psychiatrist and therapist of three-four years. Something has ended, and while I am still trying to figure out *exactly what* it was that has ended, I know that I'm in a much better place now.
But then I think maybe nothing has really ended. Because sometimes the abysmal murk still sneaks up on me, and I still find myself caught in the tangles of stale thoughts that I thought I'd "defeated" and "over come." These moments are fleeting and they are like the words at the tip of your tongue that you just can't find, but you know they are there. Sometimes I am able to wrap my mind around those thoughts and know exactly what they are saying, most other times though - these days, thankfully - they just slip and fade. They are substituted (and god damn am I hoping like hell that someday they will be completely replaced) by all the things that my life is now, and all the things that still await me. So that's what I do when I get the sense old ways are sneaking in again, I scramble for the one good thing that happened today and pitch it for all its worth into the future to see where it might land. I am curious and I use that sucker on myself. In so many ways I am still like a toddler first learning to ride a bike without training wheels, "don't turn your head and look behind you, just look forward and keep on peddling."

But no doubt it was weird to have left my psychiatrist's office that day,
"Now I know you're really not into feelings and emotions and all that gushy stuff.. but you've made a lot of progress. And I certainly can't claim to have had everything to do with it, because I think so much of it had to do with you.."
And after some drawn out speech about personal-pride, accomplishment, continuity, identity, reflection - words that I had tried to practice in my head on the trip there... I then left his office and I said "bye" without turning around to look at him. In October he will be leaving to head his own department at a hospital in Chicago. I had the slip of paper in my hand, the one where I usually bring to the front desk with my next appointment written on it. But this time there had been just a simple check mark in a box: "No Follow-Up Necessary."

It's weird to know that I don't have bi-weekly or monthly appointments, the regularity of those sessions were the cornerstones to my schedules. I would shape my class and work around those appointments, each semester or month I'd tell myself "you're organizing it this way because if you don't everything else falls apart." But now those appointments are gone, there's a vacancy in my google calendar that in a strange way I miss with a sense of nostalgia. It's even a private joke with myself, remember the days when I was a robot and had no feelings, like ever? The days when I didn't care whether I turned left, right, or off the bridge - because I thought someone else controlled my navigation? Sick and twisted maybe, but it makes me crack a smile for just a few seconds. And in those seconds I suddenly get this feeling that I know the full expanse of my life from when it began, to where it is going.. and instead of feeling like some alien foe I feel at home.

Because I am okay for now.

You're a great Language Instructor

2013-08-12T09:06:00.002-04:00

I used to not be able to speak this language.

For those of you who have been reading this blog for the past several years you may have noticed its 'evolution.' I've fiddled with the blogger template, changed the design and the lay-out, changed the style of my entries from Advice-giving to long-winded-ramblings.. but it's also mirrored changes from myself. This blog space has evolved because within the context of O.I., disability, disability community, O.I.-blogger-community, disability-blogger-community.. I have also become a different person from who I was three years ago when I closed my eyes and leaped.

Trust me, I still have my eyes closed on most days when it comes to this stuff. I still don't know where I'm going with it (both in terms of real life work and this virtual work), and I still get scared because a part of me is still waiting for that day I discover some horrifying part of myself. Some part of my identity in this context that I won't be able to contend with or make sense of. It's not that I am pessimistic about the knowledge I've gained so far thru my self-reflections and burgeoning experiences, it's because I want to be ready for it. I'm just someone who likes to prepare, alright?
So I continue to plod along while slinging the occasional offhand acidulous one-liner, or writing rambling-creative-prose-posts in my effort to simultaneously embrace and also protect. Protect myself from what? I don't know. Don't you dare leave a comment and tell me though; otherwise all of the work I've been doing will have been for nothing!

But look I've already gone off the topic of this post. The point is that when I first started blogging three years ago, I never would have been able to write about what I understand about myself in this context not to mention what I'm afraid of!
I didn't have the language to know how to express all of this. As my reader you might think the language I use is my particular writing style, and some of that is true. I know some of you continue to read because you enjoy my directionless whimsy. But much of it is also because three years later I now have a much broader, and a more actively present vocabulary and experience to connect with my readers. Did you notice it too??
Did you notice that day when I decided, gee I'm going to stop talking to people in bullet points and just write to them about how I feel and what I think. Did you notice the day I decided to write entries directed to classroom aides, nurses, doctors, my parents, siblings, friends? Because I realized that these were the people in my community that matter? And therefore if they matter to me in my community, surely they are also the people who matter in my readers' own communities and lives? Did you notice when I shared incidents from my day-to-day life because that's what all of this means to me now? It is normalized, it is typical, it is my everyday life.

Look at my first entry here. All of this is no longer some bullet-point list of troubleshooting tips I treat. I am no longer that cock-sured 20-something with a disability, confident enough to spew advice to my readers. Nope. Now? Years later I've become that curiously terrified disabled 20-something, confident enough to tell you that you've helped me learn the language. Confident and humble enough to proceed with eyes partially closed because I know that there's still something for me to learn from you. There's still more language for me to absorb from all of this. And I'm thanking my lucky stars because as long as we're in this together I'm ready.

Booking Thoughts: The Short Bus A Journey Beyond Normal by Jonathan Mooney

2013-08-03T23:27:00.000-04:00

I was a short bus rider from Kindergarten to 12th grade without knowing that I was a short bus rider. Teachers would say "You can only choose 2 friends to ride with you.." on class field trips. And always I would have trouble choosing between one squirming-hand-raised buddy and another pal's pleading face. By the time middle school came around I had learned to tell the driver to please blast the pop-music radio station as he worked the controls to deploy the mechanical lift. There were many mornings when "Pretty Fly for a White Guy" by The Offspring was my entrance music to 6th grade: So don't debate a player straight/You know he really doesn't get it anyway/Gonna play the field and keep it real..the world needs wannabees so (HEY HEY!) Maybe those are some reasons for why I didn't know what that short bus represents in our larger society. Because it never occurred to me during my public education career that what I (on most days) excitedly rode to school in was a long standing symbol of pain, oppression, shame, and exclusion.. for so many.

Jonathan Mooney was one of these many people for which that was true. This book isn't a trip down memory lane where we revisit traumatizing childhood moments for Mooney. He couldn't sit still as a kid, he hid when it was his turn to read, he took on the persona of the all-star soccer "dumb jock" to compensate for his academic failings. This wasn't about a man who having graduated with honors from an Ivy League decided to preach around the country to inspire other kids with disabilities. Quite the opposite in fact. The book begins with Mooney about to pitch his "Overcoming Disability" story - that template plot-line that mainstream media so adoringly idolizes from the disability community - and instead foregoes plans to allow a film producer to tell his story. As a reader, that's the moment I thought to myself dude I totally respect you and will follow you on a road trip to anywhere - no questions asked. Let's dooo this thing!
Trusting a narrator is telling me the truth and actually connecting with them, on a personal and reflective level, are actually two very different things. Before I picked up this book I was weary about whether or not I could connect with him. As I'd mentioned, my experiences on the short bus were very different from Jonathan's childhood experiences on the "special van." For him it was only a reminder of how he didn't fit in, and was never seen as 'normal' in school - though his disability was invisible. I didn't expect to see the characters Mooney comes across on his road trip with such empathy, and also a shared discomfort. Not through his eyes anyway. Could two different experiences between short bus riders come out on the same side of the disability community? Would we have deeply different philosophical understandings of a person's identity and their disability? Would a self-professed nerd learn anything from a guy who used to be some "dumb jock"?

With the kind of honesty and humor that few would utter aloud but everyone is thinking it Mooney shares the social experience captured inside the short bus, all while steering its passengers (and the reader!) towards a horizon he frequently references. "We are told to chase it---in our culture, in our families, in our lives. But when we chase it---as I did---it disappears. Normalcy is like a horizon that keeps receding as you approach it" (33). The power of Mooney's journey is that I didn't expect to care or think about whether or not I've been doing this all along myself.

Normalcy. Human value. Freak. Human race. Genetic variance. Diversity. Community.. Those are words and concepts I struggled with (and still do) when I first realized I have a role in the disability community. While working with the young women's mentoring program has helped shed some lucidity on my understanding of those words, I was stunned and jealous at how precisely Mooney could navigate his own confusion and through that offer some clarity on these ideas. "I'm sure that many people had thought that Butch was stupid throughout his life....It would be patronizing to say that Butch was like everyone else. Butch wasn't normal, and he wasn't a freak. He was wondrous" (102). Over and over Mooney brought me to the destination, turned on the metaphorical headlights of his short bus and I could see my own misgivings of the people and things I'd been racing to flee. One of the people we meet along this journey, Ashley, in particular brought these knee-jerk instincts to me right away: "I didn't know if I could truly value a body that was so damaged...And if Ashley couldn't learn, was she a fully functioning member of the human race?" (113). I flinched when I read this because it's something I have thought about in private to myself, not even feeling like I could think about them at work because the thoughts just seemed so wrong. I trusted him as the driver of this short bus and narrator of this insanely intimate journey because he elegantly steers a short bus through the thoughts I can't navigate on my own.

Stylistically, The Short Bus: A Journey Beyond Normal presents individuals in a way that is humanizing, self-reflectively critical, honest, and intelligent. Mooney always makes it a point to describe the person first, their home, their habits, their lifestyles and what drew him to meet these individuals. Throughout these descriptions he weaves facts and history succinctly, including only points that are sure to make a lasting impression on its readers: "One of the most powerful concepts within the disability rights movement is the idea that we all have temporarily able bodies....I was still scared of that idea, to be honest, but after Cully and Chad, I knew what to do with that fear" (179). This style of narrating his story was markedly different from Andrew Solomon's Far from the Tree which read more like a textbook at times, and inundated readers with a wealth of knowledge, medical information, and labels that I at times thought nearly lost the humanity and the lives they sought to portray. In contrast Mooney takes all that is humane about individuals he meets and thrusts them next to the things about themselves that fall outside what is expected. "What I do know is because of Katie, no one was left out, no one won, no one lost, no one cared, and we were all more ourselves than we were before the game" (195). When we see these side by side, those are the moments when I felt like I was riding shotgun beside him.

By the end of the journey I wasn't left with just a string of stories and individuals along Mooney's road map. These individuals took a place on the short bus and shared with it some piece of their own identity, each story adding to the community of Mooney's short bus passengers, "We need Cookie as a testament not only to the importance of community but to the power of transformation, a reminder of our ability to create ourselves" (169). Their lives are not centered around this short bus that Mooney drove to meet each individual, and they are not trapped by the confines of what it symbolizes either. It's a story of a community made up of individuals that transformed and freed the driver of the short bus, and left this reader wondering what more of herself might be created if she stopped -for a moment- racing towards that horizon of normalcy.

And then I became THAT grown-up

2013-07-25T21:59:00.000-04:00

There is a certain amount of energy you need to radiate, and a kind of shamelessly vulnerable mindset that is required before putting on an event. At 11:03AM this morning I neither had that energy and nor was I in that mindset. Last night I had stayed up too late with a friend, as we usually do, and as people usually do on July nights.

"So there is a teen here volunteering I wasn't positive if u were coming still but I need to introduce!!! Lol" my co-worker's text message buzzed my phone. I was still in the office, still nowhere near awake. I looked at her message and wished that her slew of exclamation points would somehow jolt my lethargy awake.

After a series of searing summer days, Boston was gray today. Gray, cool, and drizzling that later on turned into a kind of torrential monsoon. From my desk I looked out the window and took out my DontDisAbility t-shirt. I had stuffed it in the bottom of my backpack the night before. The one that she had already been wearing that morning as she bustled around her desk with her crutches.
So by the time I got her text message at 11:03AM I began to feel guilty. Like maybe I should get my t-shirt on, and the other things on my to-do list would just be able to wait. On a day we celebrate the passage of the Americans with Disabilities Act that was passed in 1990, I suppose those check-boxes that stared back at me from my notebook could be set aside for a few hours. What could possibly be more important than pushing the movement forward?

Embarrassingly, I was being petty actually. To be totally honest I have some amount of distrust for those things that I can't wrap my head around. Celebrating the passage of the ADA with other youth leaders in the Easter Seals MA Youth Leadership Network by donning t-shirts, and participating in a "flash mob," and someone had also mentioned a colorful parachute (the kind we played with in elementary school gym class..) made me nervous. Uncertain. Uncomfortable. Awkward. What exactly is going to happen? Was the only thing my brain shot back at me as I tried to wrap my mind around the event. I knew that these were all old reactions that I had thought I'd gotten over 2 years ago. The fact that they were so easily dragged out again, on a day where I should be proudest, put me at a loss for words and emotion.

But it was soon 11:45 and I gave the receptionist a long look as I pulled my DontDisAbility t-shirt over my head. "Alrighty, here I go..." I mumbled to her as I pushed through the double glass doors.

When I got to City Hall Plaza and located my friends, I approached her,
"So who's this kid you wanted me to meet?"
"Well she had to leave at around 12 or 12:30 so I'm not sure if she's actually still here anymore."
"Oh whoops... sorry" I responded. Now feeling doubly guilty that I had possibly missed out on an opportunity.
"Well, what was her story? Why'd you want me to meet her?" I asked her.
"Well her story is that she's a 14 year old girl with O.I. That's her story!"
And those were all the words that she needed to tell me. Those were the words my mind needed to hear to shake off its sleepiness, immediately I thought about the young women's mentoring program.
"Oh sorry."
"Well, it's okay.." and then she had rolled off again to go corral others.

I realized that even if we were there to celebrate a historical day that happened 23 years ago, this was still an active movement. It moved awkwardly, without shame, without apology, without waiting for those who want to sit around until the rest of the day tells them what to do. Those were the words that I needed to hear to get me going, now I was in event mode.

Three years ago I had been to the event and knew only one person. I only knew her, and was confused even then as to what was going on. But this year it was different. I knew people. Not just their names but their stories, why they got involved in the movement, what they still struggled with, what they hoped to do after college, where they stood on the hundreds of politically correct 'terms' that flavor our community. And they also knew me. As a blogger, as someone who asks too many questions, as someone who is too idealistic, curiously feminist, and too self-conscious. It was in the way the older folks called out to me "Hey Sandra!" And in the way the younger generation said "Sanddyyyyy omggg!!!"

This year was different because now I have a place here in all of this.

Half way through the event I spotted a young girl in a permobil wheelchair. And in the way you and I know who has O.I. and who doesn't, I knew she had O.I. That was the girl she wanted me to meet, and the moment our eyes crossed there was something about this teen that almost told me she wanted to speak to me.
"Oh my god, there's the girl with O.I. she wanted me to meet!" I said to my friends.
"What? Where?"They turned their heads to look around. But I was already off, heading towards the barricade and gesturing at a police officer to let me through.

"Hey lady, are they getting out with you too?" The officer jerked his chin over his shoulder. My friends looked like they were on their way over but they were caught up in the speeches of the Commissioner and the Mayor.
"No.. no just me.."

I followed the young girl's lead. She parked herself in a corner against a brick wall between the entrance and the registration table.
"Umm hey, I'm Sandy. So I think you met my co-worker? She told me about you.." I could tell immediately that she was scared, that she didn't want to be there, and had no idea how she'd woken up that day and found herself in the middle of a celebration that was thrust upon her. Like a smile forced onto a clown.
"Yeah, I know. This is all pretty overwhelming right? I actually got overwhelmed too with the craziness going on. It's good to take a break." She nodded back at me.
"What's your name?"
"C----. Like the perfume, you know?" I did know.
"Cool! So what brings you here?"
"I work here. My best friend's grandfather is the mayor... I'm an intern for the summer at the disability office."
"Oh wow! That's a pretty sweet deal. Do you like your internship? What are they having you do?"
"Just some projects."
"That's pretty baller stuff for you to be doing the summer between middle school and high school. I was too busy nerding it over Harry Potter books that summer." I got a crack of a smile from her at that.
"So listen, I think my co-worker wanted me to meet you because I do work with a group of young women who are all around your age. We talk about stuff that matters, you know? Like regular stuff." She gave me another look, like I was probably trying too hard and we both knew it. So I stopped and asked her if she had siblings, and told her a little about myself. Trying to think about only the stuff that matters. To a 14 year old. Clearly terrified of what was going on, cornered between a registration table for a historical day and a brick wall. And me.

It brought me back to three years ago when that woman who texted me this morning had done the same thing to me. Cornered me in the hospital lobby, and flung her knowledge and comfort of a world around me in such a way that I was compelled to become curious, to become involved and active. Who knows what will come out of my interactions with C---- today. We swapped email addresses, and I got her to laugh at a few more jokes, .. but I'm also aware that however much moving a movement may do, it's still up to the person to move inside it. I saw so much of myself in C today. She was me at fourteen but in so many ways far more willing than I ever was at that age. She was on the threshold of the barriers at that event today, sitting waiting and watching. Hopefully whatever small part I play in this grand hoopla of a movement, maybe today I convinced her to move inside of it and join us.

Initial Thoughts: Far from the Tree

2013-06-26T01:56:00.000-04:00

It's a suuuper loooong book. No seriously, like 700+ pages long. But I have about a chapter and a half left to read! So probably within the next two weeks I should be able to finish it off. In the mean time here is some book babble:

GEEK IT UP WITH ME!

2013-06-09T21:17:00.001-04:00

Hello Readers...

The rumors are true, I am back!

In case you have not already "liked" my facebook fan page which is where I post all the latest, and greatest, most exciting news... here is what you missed:

Now if you look on the top of the blog page you should see a tab called "Book Review List:" You can go head on over there and check out the books on my list. You can also see the books I have already reviewed! I'm really excited for what's to come with this next stage for the blog, and I'm happy to have you come along too.

Let the reading begin!
Sandy

In the Meantime Go Share Your Thing

2013-04-30T08:00:00.000-04:00

Dear Readers,
After two steadfast years of tapping out ramblings for you to read I'm going on a blogging hiatus. Indefinitely. Just let that
sink in
for a minute.
Whoa, there.

{Thank you for accepting my imperfecta as I sought to present it in as perfectly a way as possible. & Thank you for your patience as I began to accept my own imperfecta as someone trying her perfectly best can only do.}

Over the past two years I approached writing entries with unbridled infatuation like tweens at a boy band concert. Some posts may have made you blush or chuckle. Or maybe my slight obsession with writing made you tearful. Whatever your reaction thank you for letting me share with you. Sharing something that I love doing with others has easily been the best part about blogging. I hope all of my readers get a chance to do that in his or her life: To experience that exchange without monetary compensation or academic credit. Simply because you love it and others are delighted by it.
Seriously. Find your thing, or I would go so far as to say your life isn't complete.

Maybe it won't be about having O.I., or disability, or letters to things that won't ever reply back - but I will always be writing. This has been the case since I first learned to read. I need to write and that won't ever change.
My life changes though, constantly. Because I am young and still mostly unsure of what I want to do when I grow-up. Because I am probably one of the most innately restless people you will ever meet. Because I move fast without thinking or while thinking too much. Because I am incredibly fortunate to be approached with new opportunities, shiny new projects that I lord over like the challenge-glutton that I am. Because I am always in need of time and space to continue writing more, and better. Because I am still looking for more of my own things to share. Those are some reasons for why I've decided it's time for this blog to rest.

The blog won't be deleted and I won't ever shut the account down - the entries will remain here for you as you have been there for me. As for the rest of our lives? We'll share them, and someday just like that we'll meet again.
Rockets & sunshine ahead,
Sandy

Finding What We All Need

2013-04-25T00:00:00.000-04:00

It was the sight of the large satellite dish on top of news vans that took me back to more than a decade ago. Seeing row after row of the various media vans lined along the sides of the Boston Common and Public Garden, all of them willfully disobeying the city's persnickety parking regulations; my body had already begun remembering a different place and time.

I didn't realize that afternoon, the day after the Boston Marathon bombings, that I felt transported back to a moment when regularity turned into uncertainty, and also great sadness. A time when my morning routine involved watching the Disney Channel or waiting to hear MTV play Matchbox 20, because back then they played music. I was in the eighth grade. My favorite activities included nerf gun fights with friends, playing MASH during science class, sneaking friends (*ahem* boys?) into the school elevator, and zooming away from my aide. That was pretty much the extent of my day. I wanted Airwalks, Vans, or Sketchers because I liked that they had the 'S' on the sides - in my mind it was still cool to wear clothes that had the letter of my first name sewn on them.
-----
"It's such a nice day out, let's just stroll through the Common and the Public Garden." I said to my friend, a little more insistently than necessary. She didn't argue with me so there was no reason for me to repeat myself, though I did.
"I really would rather not be riding the subway today. There's too much going on." I told her again. We had both left the office located near Downtown Crossing, on our way towards the same general direction of Back Bay in Boston. It was the day after the attack on the Boston Marathon.

Spring in Boston has a certain routine that I have come to incorporate into my own illogical, half-superstitious, bandwagon-rider traditions. It's a time when I don't consider the spring season to have ended until I have finished a questionable looking Fenway frank. It's when students are sprawled on college lawns, ducking deeper into textbooks every now and again to avoid an over-head flying frisbee. Spring in Boston is when the more beat-up and faded looking a Red Sox hat, the more you probably really know your shit when it comes to baseball stats. This is the season of street festivals in Jamaica Plain and Harvard Square. You don't know what spring in New England smells like until you've spent hours at a farmer's market, buying fruit you've never heard of before because some guy pulled your appetite out of your ear holes as he hollered his fresh! fresh! fresh! prices. I need to have a Sam Adams Summer at Cask'n'Flagon, and during the middle of the day at least once. I need to give a dollar to that lady in Harvard Sq who pretends she is a statue, then watch her give me a borderline creepy statue wink. I need to get completely soaked in the fountain at the Christian Science Plaza. There are things I need to do because it's spring in Boston.
-----
There are things I needed to do because I was an eighth grader at Oak Hill Middle School in Newton, MA. I needed to find ways to chat with my friends in the hallway instead of sitting in study hall. I needed to find a more efficient way to copy my friend's Spanish homework, while we sat in class. (Eventually we just formed a factory line and sent his copy of the homework down the row..) I needed to tell the sixth graders they didn't know what they were in for if they got Mrs. Carven for Social Studies - "she's going to make you sing Billy Joel's 'We Didn't Start the Fire.'" I needed to use the band saw in Industrial Tech just one more time! I needed to have our Vice Principal sing Happy Birthday to me over the microphone in the school cafeteria. I wanted Mr. Darsa the librarian to read one more book during story time at lunch. I needed to spend as many more days with my friends who had known me since Kindergarten, with those new ones who I met in sixth grade, and the clique that I had been accepted to in seventh, and those who grew on me later in eighth grade.
What I didn't need, and what nobody ever needs - never mind an eighth grader - is to show-up at school on the morning of April 27th, 2001 to find news vans with enormous satellite's and cameras crowded around the parking lot. Although I rode in an accessible van by myself, and the bus driver had turned the radio down low (on purpose I presume), I could still just barely make out the snippets of newscasters on the radio. Something about my middle school, something about 42 kids on a bus that had crashed on its way to a band trip to Halifax, Nova Scotia. Our Principal Mr. Shapiro usually greeted us in the lobby of the school, a man with graying hair but always dapper with a bow tie and forever cheerful. Staff openly called him "Murph," and he'd nod in their direction with a smile. I don't remember who greeted us in the lobby that day, but surely someone did. There was confusion that ranged in size from whispered gossip middle school kids swapped, to the magnitude of confusion that I imagined was going on behind closed doors in the administrative offices. There was confusion in my mind because I hadn't put on my hearing-aids yet, they were in the nurse's office where they sat next to an FM system that charged there every night. Mrs. Mitchell's door was closed, grown-up murmurings could barely be heard on the other side.
-----
As we strolled through Boston Common the day after the Marathon bombings my body felt that same confusion, but I didn't know why I felt it that day. I didn't immediately remember why it felt oddly, and wrongly familiar. The tenseness in my shoulders, the way I kept my eyes on the pavement, the tight knot in my stomach. A general air of apprehension and nervousness surrounded me. At thirteen years-old, it was the feeling of confusion unfolding into sadness as I saw my friend burst into tears in her mom's arms when we found out four students, our classmates, our friends had lost their lives in the bus accident. One of them was a friend of mine and also in the eighth grade, another seventh grade boy I remember had been in the same after school program as me in elementary school. There were two other seventh graders who lost their lives that day as well. They were more than just our routine, they were our familiarity, the things we needed most. I remember my math teacher had left the middle school later that morning and driven to the scene of the accident, to be a face of comfort and recognition for my classmates.
That afternoon as my friend and I went past the familiar statues in the Common - I tried to keep mental blinders up; it was the feeling that it's okay to remain on the outskirts looking in, processing tragic events however you felt most comfortable. More than a decade ago I had sat on the radiators in the back of a classroom with my best friend from elementary school. We watched and sat there silently, probably not fully understanding what was going on but realizing our routine of him riding on the back of my wheelchair to classes wouldn't be the same anymore.
-----
Going through downtown Boston on Boylston Street and Copley Square isn't the same anymore. It's not just the place where my grandparents had worked for decades at the Boston Public Library, the cheers that erupt when those Duck Boat tours cross the marathon's finish line will mean something different now. The place is better even if it's different. The things that are familiar have become more so, those things that have been recently added have been welcomed with open arms. It'll be a place where I will think about community and the comfort found in remembering. I'll remember because that's what my body is telling me I should do; to reach out across tense moments to create community, and find more of those things that we all need, together.

Dear Bones,

2013-04-24T08:00:00.000-04:00

When I was younger I didn't hear or know about the '-ed' at the end of your official description "bowed." Instead I thought that my bones were like bows for an embarrassing number of years. I thought they were powerful enough to launch arrows from like Robin Hood did. And I thought they were like accessories that my mom sometimes would put in my hair; I thought they were like those bows: girly, cute, an extra detail to add on to complete the look. But if I tried to pull you back taut for an arrow you would only break. And "cute" after about age 12 becomes "weird," "abnormal," and "deformed."

The first time I remember singing anything joyful about you was when we sang that "bones song" in the fourth or fifth grade.
"The knee bone connected to the thigh bone,
the thigh bone connected to the back bone.."
And I remember thinking that this song was totally wrong because those parts of you are actually called patella, femur, vertebrae. I think I grew up a little bit that day. I felt special because I was in on some secret that those other kids in my class didn't know about yet. Like when I watched my younger brother play with Thomas the Tank Engine toys and he hadn't realized that real trains don't actually talk, real trains don't really have faces that are friendly and rosy cheeked. But I kept my mouth shut because he was having so much fun playing with his trains, I kept quiet about your actual terms because my classmates were having fun doing all the motions of the song.

I didn't really know you as "fragile, bowed, weak, brittle.." at first. At first I probably just knew you as something that hurt, and so I screamed and cried often as a baby. Then I got to know you as something that other people could make feel better. Not long after I figured out your soft spots, and weaknesses - I learned to make you feel better on my own. Then you became the thing that I had to keep in mind, or at least try to as I grew my mind and tried other things. Finally, today, you are often the thing that I know best about myself. Sometimes this last fact is the most frustrating part of my day, and other times it is the thing that saves the day. Because why should you be the best thing I know about me? Why can't the best thing I know about me be what I'm going to do when I grow-up? Or what my dream wedding will look like? Or exactly what kind of exfoliant and then moisturizer to use on my skin? Maybe I don't want to know you! Maybe I don't want to know about the crack I am ignoring, the bruise on you I could care less about, and the old break that still hasn't healed yet. Maybe I just want you to lay underneath the tapestry of veins, muscles, and skin as chipmunks lay beneath a winter's snow. Maybe I just want you to exist like that, and move about when the time is right as seasons turn from cold to warm. Those are all childish and maybe even useless thoughts to consider, but they remain notions I have thought at least a hundred times. And if you have broken - needlessly, randomly, inexplicably - a couple hundred times, I feel justified in telling you my equally random, and inexplicable thoughts too.

These will be added to our other secrets that we have shared. Remember the time when right after coming home from getting our orthotic KFO braces, we were excited to start walking again and somehow felt the sudden sharp nip of a small crack? It was against the outside of the tibia/fibula, and I knelt down - quiet and alone in the kitchen until the sensation faded. For about two months everyone was shocked I wore those braces without complaint, tightly strapping down the velcro against my shin. There is a grinding sensation that happens against shoulder blades when in a tense moment I shrug in silence. The left knee locks unexpectedly and I jerk in public at the shock, and I am bartering with you: okay if you just slip back in your socket I promise to not crack my knuckles so much today, whatever you want I'll do it. Just please don't break! There were other weird tiny incidents, moments when we both knew that rather than drag mom or dad to the hospital to spend hours on the orthopedic floor - we would just deal. You let me know what matters and what doesn't. What is urgent and what is not, though to be truthful my stubbornness sometimes pushes your buttons and you glare at me from beneath the x-ray's light table. We will have our disagreements and then tell our friends and family "we're just going through a rough patch."
Our secrets are things that no one will 'get' no matter how closely they study the genes, the sources, or trace the family hereditary footprints of your fragility. They are not things I will ever tell my orthopedic doctor about, even if he gave you a name and prognosis. And as much as I would rather not know about all of your strange quirks and abnormal deformities, would rather look away from the strange twisted spiral of ribs mashing into spine on the x-ray, our time together has forced me to become close with discomforts. The friction of that feeling isn't what makes you fragile, and it's not what makes me any stronger or capable of a person - I think it just serves as a reminder that trying to flee from ourselves is what induces the biggest fracture of them all.

Yours forever,
Sandy

Catchphrases I'm Done Catching!

2013-04-23T08:00:00.000-04:00

Sometimes I think that there must be some manual or pamphlet that many able-bodied folks in society refer to when they come across someone with a disability. Maybe it's titled something like: Helpful Phrases When Speaking to Person with Disability. Specifically this is a manual that I wasn't really privy to reading; instead I often find myself looking back at the speaker wondering, what planet did you come from?!

1. Hey shawty! (Except in this case it is not cool like in the way rap or r&b stars use it in their songs, and even when it is a lyric that is a questionable compliment. I mean, seriously now.)

2. Did it take your parents a long time to teach you to go to the restroom by yourself? (Say what!? Did it take your parents a long time to teach you how to be civil? Wait -- you probably can't answer that because they're clearly still teaching you.)

3. Would it be helpful if I opened both doors for you? (Thank you asshole, for the helpful reminder of just how short I am because indeed, I can roll right underneath your armpit.)

4. How fast does your chair go? (So fast I don't have time to answer your question right now because the chair has a mind of its own, and it is taking me away. So fast.)

5. It must be so hard for you to buy clothes. (Seriously that is not something to just say to a person unless you have a helpful follow-up. Something that is not "my little girl has American Doll clothes..")

6. Can you walk at all? (Can you have original thoughts, at all?)

7. So you can't walk at all? Not even to the front of the plane? (If I could I would have walked over to your face and put my foot up your... *sigh* never mind.)

8. My grandmother has a chair that's kinda like yours.. (I never know the rest of what that person is saying because I have already long zoned out.)

9. Is it painful? (Right now hearing you, yes. It is.)

10. I don't know how you deal. I just couldn't imagine! (Well don't try too hard! You might hurt yourself more than a broken bone.)

11. You're so lucky you get to sit all day! (You're so lucky I'm not tall enough to sock you in the face.. but your crotch is just the right height)

12. You're probably used to doctors and needles and stuff right? (Why yes, my immunizations are all up to date. And you?)

13. Oh you've been through so much already, let me do this for you there's no reason you need to go through anything more. (Because HOLY CRAP! I feel like I'm one step closer to a cure after what you've done. Geezus call-up the New England Journal of Medicine, we have ourselves a breakthrough!)

14. I had a friend back in third grade who had SomeMedicalConditionOrIllness and you remind me of her a lot. But she passed away... umm but.. it wasn't related to the SomeMedicalConditionOrIllness though. (Oh *phew* good to know. Wanna tell me what happened? Did your friend get hit by a bus?)

Book Review - Don't Call Me Inspirational: A Disabled Feminist Talks Back

2013-04-18T12:01:00.000-04:00

How I came across Harilyn Rousso and her latest work really deserves its own blog entry. So unless you are one of those select few who already know about that story, I guess you'll have to wait for that epic interaction to be told another time.

When I first read the title Don't Call Me Inspirational: A Disabled Feminist Talks Back, it simultaneously brought a smile and questioning eyebrow to my face. The smile was for the first half of the title, and the arced eyebrow for the other. While I have long been uncomfortable with being considered "inspirational," the combination of my social awkwardness and general cluelessness as a young person never revealed to me how I might address it. I smiled because the "Me" in her title was something I, until that point of hearing about the memoir, wasn't sure "I am allowed" to dissociate myself from. My smile was like when two friends secretly break a rule, and only they know about it.
But the second half of the title threw me for a loop. Sure in school I had taken history, sociology, and psychology classes about women and gender studies..if you were really interested I could talk your ear off about feminist theories. Having gone to a predominantly female college it was difficult to avoid the culture of women who had a heightened awareness of their gender. Sure, I thought and still do think of myself as a feminist. Being fortunate to have powerful female role models both at home, in school, and among my friends - it never crossed my mind to think of myself as anything other than a feminist. But "Disabled Feminist" ? Say Whaaa??

I looked forward to reading the book because I knew that I would learn a thing or two. My knowledge of Harilyn's background after doing Google searches made me all the more curious about who is this gimp of a woman with cerebral palsy talking back to people? And what is she talking back to people about? Why is she giving me yet another label to think about? When all was said and done I did more than just learn a thing or two while reading the book: I was comforted.
Most of the time when we read memoirs it's about how that individual came to achieve what s/he is best known for. Be it political figure, civil rights leader, Hollywood stars, musicians etc. - we are reading to follow the trail to their spotlight. Those are all spotlights that we probably fantasize about in dreams, or we share them while naked with the steam from hot showers as our audience. Harilyn's memoir, a collage-structured literary work, allowed me to follow her trail to being human. As a young woman with a disability who has only recently been okay with thinking about herself as disabled, and only recently began working with other young people with disabilities - Harilyn's collection of stories didn't just make me feel 'normal,' it made the concept of 'normal' accessible to me in a way it never has.

"The pleasure of self-recognition overpowered any feelings of abnormality and self-disgust...I wish I could say that this painting "cured me" of my negative attitude toward my right hand, but it did not...There is no quick-fix for a lifetime of self-hatred, only slow healing" (104). There is a young child in me that still waits for mom to tell me these words, and I didn't even know that child was there until I read Harilyn's story. Whether it was about buying her wedding dress, going on dates, falling in love, claiming her disabled body, being "the only one" - Harilyn let me know what was to come in my future (or what could come). This was comforting because I hadn't experienced someone telling me okay look, these problems you're just now coming to grips with aren't going away any time soon. But you can still kick-ass doing your thing while telling people to piss-off. You can still pay rent, eat McDonald's french fries, and enjoy a margarita. You reading these words might think "well d'uh obviously" but when have you told those words to someone else? And then explained to them how you do all those things? Did you talk to them about all the things everyone thinks they're not *really* supposed to talk about?

There are frequently moments in Harilyn's memoir where she writes about experiences that I had cataloged in my mind as oh that's just me being a freak. Don't talk about it with your friends because they won't have a clue, and won't know what to say in response. Her humanizing language and clarity with which she writes put an exchange between a beggar and a cripple in a socially aware context. It gave me some insight into why I prefer being alone with myself. It told me that my sensitivity I sense around power and dependency in a relationship are not me being paranoid, or me being just another annoying girl. It revealed to me my own nerdy ego: "The prevalence of disability stereotypes when I was growing up convinced me that I would never find a partner or have children, so achievement in the classroom and the workplace became central to my identity" (39). It gave me hope that right now I am not just going through some 'disability-loving-phase': "Longing is a powerful motivator, and my shame about so much I had learned to dislike about myself has diminished with both age and my involvement in the disability rights movement" (33). Harilyn is talking back to the silence of issues unspoken, to the young people who are hesitant about being loud; she is talking back to let readers know they can talk back too.

If you are looking for a book that takes you on a journey and forces you to question yourself, the way you interact with others, and most compellingly your own flaws - read this book. During a book group discussion, I decided that this isn't a book that should be read just among young girls or women with disabilities. It needs to be read by those without a readable disability, men with disabilities, able-bodied people, the parents of girls with a disability, feminist scholars, civil rights activists... it needs to be read because Harilyn is talking back to all of us, and damn is it high time that we listen up close.

Actually.. how 'bout .. "no."

2013-04-17T08:00:00.000-04:00

A couple weeks ago I had written a blog entry about the pressure I sometimes feel to explain O.I., or what is more often the case feeling like I need to provide an explanation for my existence. There have been countless incidents where the awkwardness of "feeling like I should" answer those questions of "why?" "what's wrong?" "what happened?" have made me spit out words I would rather swallow. Or they are incidents where I have wanted to reply with "why do you want to know?" but, for whatever reason, felt that I would be making a social faux paus by refusing to answer. And instead I make myself feel worse after all is said and done.

Of course the next follow-up post to that entry would logically be so how do you tell a person to kindly mind your own beeswax? (Okay so in actuality a parent of a young child with O.I. phrased the question much more eloquently than that in her comment to me... but the point is still the same!)

I don't always know how to say "no. I'd rather not talk about that right now.." or "I don't feel comfortable telling you about it.." And I think in part I struggle with refusing to answer probably because I am an adult who has too much awareness of 'what is expected of me' vs 'what I can do.'
But let's pretend for a moment that I really am fearless and uncaring about what would be socially acceptable. If I were approached by some random adult who wanted to know "so umm can I ask you a question? What's your deal? Why are you in a wheelchair?" Here are some options of how I would say "please piss off" in my ideal fantasy world:

1. Is there something specific you want to know? I'm in a wheelchair for the same reason you decide to put boots on when it's a blizzard out, or when you put sneakers on when you're about to go for a run. It helps me get around.

2. I don't really want to talk about it with you right now, or like...ever.

3. That question is going to cost you something, like a drink.

4. I don't think your question is something I feel like I need to answer.

5. Tell me why you're curious. And no, your curiosity will not be answered by asking to test drive my wheelchair.

6. Well, what's your deal about my deal?

7. What's my deal (or problem, or disease, or condition, or disability, or sickness)? It's just mine to deal with, and yours to stay out of.

8. I just am what I am. And what about you?

I know, I know, many of those responses above are borderline snarky and even hostile. But that's because their question, in some instances, can make me feel vulnerable and pathetic. There are a lot of variables at play in each incident when we are confronted with "WHY?!" The age of the person asking the question, the situation, the environment, the mood we are in, the weather, whether we are late to go somewhere, etc etc. I think that maybe just as we might be getting in the way of ourselves explaining to others, we might also be getting in the way of ourselves being in the right. I keep telling myself that this is one of those things where the more I do it, the less awkward and weird it will feel to me. Because I cannot be wrong when it comes to explaining (at least not at my age, and with my knowledge), and that's just what I need to continually remind myself each time it happens.

Listening to say Good Bye

2013-04-16T08:00:00.000-04:00

"Are you here all by yourself?" Her kind smile let me know that she was somebody's grandmother. Her tired eyes told me she was some young patient's grandmother.

I nodded yes, and gestured at the empty seat at the round table I was at, letting her know she could sit there. My attention turned back to whatever it was I was doing on my laptop, something that wasn't really busy enough. She plugged in her cellphone in the outlet on the colorful blue pillar near us. I figured she was just waiting for her grandchild's appointment to be over, maybe she was waiting for the Valet to bring the car around, her phone made trilling alerts. I continued tapping away, letting the familiar noises and framed Dr. Seuss pictures fade to the background in my mind. The old woman became a part of that background in my mind too.

"My granddaughter just got out of surgery. She had surgery on her back, I just came down to sit for awhile. To get away from her room, it's just so hard to see her in so much pain." I looked up from my screen as she spoke. Her elbows rested on her knees as a maroon cellphone, the kind of model where a keyboard slides out, shook in her hands. I closed the lid of my laptop and listened.
"I'm sorry to hear that. But I can understand it can be exhausting sometimes, all of this. It's good for you to take a break every now and again." She set her cellphone down on the table as she slid fingers in the space between bifocals and her eyes, she rubbed them like she was trying to see past an illusion.
"My son is in there with her right now. And he keeps sending me these texts letting me know how she is doing, the pain that she is in. No one calls anymore, everyone just texts and I hate texting." She smiled at me, knowingly because she knows that I probably hate talking on the phone and prefer texting. But I listened because it seemed that is what her she needed most.

"My granddaughter she is 17 but, mentally she is really probably about 14 or so. She had surgery on her back because she has ..sholi..sholio..something? Her back has a terrible curve in it. I am not even sure how it's pronounced."
"Oh scoliosis?" I respond. She nodded eagerly, and I took that as an opening. An opening that maybe I could venture in, although in truth I had no idea what I was getting myself into. Or, more importantly - what she was following me into.
"I have a brittle bones condition, so my bones break easily. I was basically born with scoliosis. I'm a little familiar with the back surgery because some of my friends have had it, they put a lot of hardware in there. My friends all seem to be happy with their operation."
"Oh bless your heart. I know this was probably the right decision for her but it's still hard to see her in all of that pain." I could only nod. Au Bon Pain smelled like it was baking another batch of buttery croissants behind us. A child screamed for a balloon. I saw the tip of a red shoe from the hospital clown from the corner of my eye. Her tired sighs, interrupted by the trilling noise of text message alerts, were loudest to me.

"Have you been going to Children's Hospital for a long time?" She asked me.
"Yes, I was diagnosed here. Although today was my last appointment with my pediatrician, I'll be headed to a less colorful and fun doctor's office next time." I said, trying earnestly to kid.
"Oh my! That's quite some time! My granddaughter, this is the second time she has been here. She was originally at the Children's Hospital in Florida."
"Well, you know they do say that Boston is the best place to be for children's medical care." My loyalty to the hospital, despite all of its changing construction and branding, was something I was proud about. A pride that I wanted her to find some comfort in.
"I know, I know. And I am sure the surgeon did a fine job on her. He really seemed to know his stuff, he seemed like he knew what he was doing."

Conscious of all the reassurances she had probably already been receiving, whether it was the ICU Nurse, the attending, the surgeon, the on-call staff, the pain management team..I didn't want to repeat the same words I myself have heard so many times before. It occurred to me that perhaps this somebody's grandmother wanted to be listened to by a patient. Someone who had experienced the care her granddaughter might not be capable of communicating right then.
"I've always felt safe and like my doctor would do a good job when I'm with them. At the very least, I have always gone home feeling better."
"Thank you. Thank you, that's kind of you to tell me. Well, I should probably be heading back up there again. Now you take care of yourself okay? Stop breaking so many bones!" She smiled at me as she reached over to unplug her cellphone charger and began wrapping the cord around the charger.
"I'll do my best. I hope your granddaughter has a quick recovery, I'll be thinking of you today."
"Bless your heart again dear, you have a wonderful day."

Admittedly I had ended my last appointment with my pediatrician feeling underwhelmed about where I was headed for primary care. Probably a hospital that was much less colorful, something less exciting and energetic, certainly nowhere that had cartoons playing on the t.v. in the waiting room! But as I thought about how my physician was telling me about "more adult care.." I realized that even if I don't feel totally enthused by the prospects, there are clearly those around me who see that I'm ready to move along: on to the care I will be receiving, and the kind I know I can give in return.

Nothing is Supposed to be Wrong. And yet..

2013-04-11T08:00:00.000-04:00

While I have written at great lengths about personal feelings & thoughts, this topic comes nowhere near that other stuff. That's exactly how private I consider this topic. It is in its own damn category of private. Please keep this in mind as you read on.
--
During the past three and a half years I have been undergoing mental health treatment for severe depression. Next month this blog turns two years-old; whether you have realized it or not you have seen me go from a very unstable place, to a place of contentment and greater stability. No, this blog was not a suggestion by my therapist or psychiatrist. (It was a suggestion by a friend from high school.) I never meant or planned to tell you about any of what I am about to say. But there are far too many young people & teens who emailed or messaged me about their mental health concerns, this is for them.

"What?! No. NOT YOU! I don't believe it. Seriously?" Some variation of that is what I got from close friends when I told them I was seeking help.
The shock from my friends was understandable because on the surface I am not someone you would think struggles with depression, suicidal thoughts, and a compulsive urge to cutting. Many of my friends had some disbelief in the idea that I, Sandy, was ever anything but happily enthusiastic, sarcastic without constraint, witty with no apologies, and always eager to engage with the community around me. I have always been the student who could hold her own, I joined all the "right" (geeky) after school clubs, my resume is something that reeks of idealism in the pursuit of taking-over-the-world, I often have too much fun with friends who love me for who I am...On the surface nothing is supposed to be wrong. And yet as a fresh college grad gunning towards a future of public service, I was being treated with antidepressants and weekly therapy appointments.
During an annual physical exam, while in a state of undress in an overly large hospital gown, my primary care doctor asked me what the dozens of scars and cuts on my arms were from. That was how I got help, someone else took that initial half-step for me. By doing so she also helped me realize there is more to managing my health than O.I. I think including the PERSON'S health into the overall "disability health care management" can be forgotten, or just slipped in like an after thought. If you take away nothing else from this post, remember to not forget the individual.

The rest of that first step was in the way that I dragged myself, every week, to my therapists' office and struggled for 45min to talk. That Sandy who is otherwise verbose struggled to convey the differences between "I think I feel sad..." "I think I am angry.." ".. I don't know how I feel.." "When I cut myself I don't feel anything.." Every sentence I stumbled over in therapy was a little nugget of clarity that I gained for myself. I kept going every week.
My physician helped me make the first step but eventually I recognized that I had to help myself. No one was around at home to make sure I was going, no one at school was checking in with me, and while my closest pals knew what was going on - they also knew I would never talk about it with them. (Many of them spent afternoons & nights with me to make sure I would not lose myself in the echoes of my own thoughts, lost in my ginormous brain.) There came a time when I said I want to continue getting help because I know myself to be a better person than the thoughts going through my head. I know I am capable of offering so much more to society than whatever-the-fuck-is-going-thru-my-mind; the things I have already accomplished is evidence enough. But at the same time those things I had accomplished were also clearly not enough. Several years of therapy helped me to realize what instead is enough.

Can I pin my depression on the fact that I have O.I.? No. That would be wholly inaccurate. The source of my depression, like for so many, is complex and long-winded. But I can condense it to a feeling of worthlessness. I saw no value in just who I am without it being tied to school work, my resume, or any other external achievement. Every time the compulsion to cut stormed in my head it brought with it a hatred for myself that was smothered in: "I am worthless!" "I am useless!" "I will always be inadequate! Nothing I do will change that!" "I do not matter!" And for several years it was all that I heard so that everything else I was doing - no matter how amazing - was lost in those sound bytes. For years I followed through with that hatred. For more than a year I always wore long sleeved shirts in public. More accurately though, I was depressed not because I have O.I. but because I have me. All of me. And it wasn't until I began to understand who I am, and learned why I can love that person could I begin to quiet those other echoes.

Through therapy there came a time when I was recently able to say "I haven't thought about cutting myself for a week!" "...For a month!" "...For two months!" And then "I don't remember how many months it has been since I last hurt myself." "I have not had thoughts of rolling off of the skyscrapers in the city, or jumping out of windows." "And I am happy with myself because of this.. this.. this.. although sometimes I still get angry because of that..that..and that." There is value that I have created for myself by being who I am. I can express it in a conversation. A piece of that value has been expressed in 390+ posts, a blog that has brought 400+ people together, an area of professional work I never thought I'd ever have anything to do with!
While I have plans with my therapist and psychiatrist to conclude my mental health treatments by the end of this summer, that doesn't mean my problems will go away. Even today, sometimes those urges of leaping and plunging lurk around. Deciding to wrap up mental health treatment just means I now know myself better, enough to know that I have the ability to react to situations in a healthier way. To think of myself, and for myself more positively. And that I can do all of those things because I value myself to warrant treating, loving, respecting, and helping myself continue to be more than who I was yesterday. Because I am enough.

--
*If you are a young person reading this and you have further questions about my own experience, please don't hesitate to send me an email. I am BY NO MEANS QUALIFIED to give professional advice, I can only speak to my own experiences. If you are looking for professional mental health help I would start with your primary care doctor..or perhaps a guidance counselor at your school.*

Uhh.. "Shearing Sets"?!?!

2013-04-10T08:00:00.000-04:00

Off the top of my head I can think of two medical exams where I actually need to use my brain: an eye-exam, and a hearing-test. But it's the hearing-test that I have honestly felt stupid, and even humiliated at times.

I got my hearing-aids when I was in pre-school. I vaguely remember my dad having to wiggle them into my ears with one hand, and with the other arm holding me still as I squirmed away. I also remember that they were attached with a red string, the kind of string that holds a librarian's glasses together - one loop around the left hearing-aid, and the other loop around the right hearing-aid. In my pre-school mind the only thing that string was good for was to easily yank them out the second I got home.
This means that I have had plenty of audiology tests in my life. Back when I was a kid there were fun blocks and toys to play with, and a Sesame Street puppet that danced in a window box as I turned my head to whichever speaker I thought was playing the tune. I don't remember when things got incredibly less fun, and incredibly more 'test-like' but it happened before I finished elementary school.

Soon there was one spot that I would have to stay very still in. There were all kinds of strange headphones placed at various angles around my head, and on my ears, and right behind my ears - and the only movement allowed was to raise my hand every time I heard a beep.
Wait did I really just hear that beep? Or did I just remember that tone from the last beep from a few seconds ago? OMG brain, please focus dammit!

Oh god not the annoying static at that annoying-as-all-hell pitch! And she wants me to listen for that tiny beep... with all this other noise in the other ear? Well that's just obnoxious!

Wait I didn't actually hear that low beep, but I definitely felt it vibrate from the headphones. Does that count? Should I raise my hand? Dammit, what the hell - I'll just raise my hand anyway.

What will I have for lunch after I get out of this hell hole? Forget lunch, I need a straight up beer after this nonsense!

During this whole time it's just me in a sound-proof room with the audiologist in the other room, looking at me through a window as she fiddles with her dials and jots down on a piece of paper all the made up noises I am hearing. And in my paranoia, or lack of confidence in my hearing abilities, I am desperately searching her face for clues of whether or not I'm getting anything right!

But the beeps and noises are nothing. The toughest part of this for me is always the "say these words back to me.." part of the test.
Her: Say hot dog
Me: hot dog
Her: Say sailboat
Me: uhh..mail moat?
Idiot! That's not even a word. What the hell is a mail moat?
Her: Say cupcake
Me: uhh.. cake.. fuuhhc..wait. Oh, cupcake!
Context clues helps!
Her: Say mat
Me: crap. Is it mat or bat? Wait did we already use either one of those words? Ugh just go with "bat."
Her: Say letter
Me: feather
Her: Say weather
Me: weather
Her: Say sweet
Me: uhh.. fleet?

It also drives me nuts because the audiologist hides her mouth during this part behind a piece of paper. My natural instinct is to say "I have a hearing-loss and lipread most of the time, can you move your hand?" But I can't. I can't because she is hiding her mouth on purpose and my gut says: you are a cruel cruel human being. But of course I know that's not really who she is... she just happens to get to be intentionally annoying as a professional career... and I try really hard to think to myself: this is for your own good. All while I am repeating:
"..pleather?"
"uhh.. waffle?"
"ban Kate?" "..no wait, wait, I meant pancake! Did I get it??" But she has already moved on without responding.
Her: Say bleacher
Me: creature

Oy vey. I consider having "passed" a hearing-test when at the end of it I am not taken away to the loony bin because I am "hearing things."

Not Your Moral Compass

2013-04-09T08:00:00.000-04:00

There were three stalls in the public restroom and one of them was wheelchair accessible. I had just come out of the accessible stall, and as I headed to the sink saw that the other two stalls were preoccupied. I stood up on my foot rests and leaned forward to soap'n'scrub and in the mirror's reflection saw an older woman smiling all the while as she inched closer to the stalls. I smiled back, and continued rinsing the soap off my hands. Trying to look like I wasn't really noticing her slow approach towards the stalls, while also smiling at me in the mirror every few seconds.
Immediately in my mind I assumed she would have just gone into the stall after I was finished. Most people do, and it's something I expect people would do. And after the third or fourth time our eyes accidentally met in the mirror's reflection, (all the while we were both trying to avoid contact with one another at the same time..) I wanted to tell her "you know you can go ahead and use that stall now.." But I didn't end up saying anything. Instead I dried my hands on my jeans and left, all the while being somewhat amused by the whole situation.

Because why did I need to say anything? It was a public restroom and I didn't think it was my place to be giving other women permission about whether or not to use the accessible stall; particularly if I didn't need it and it was the only stall open. Sure some other woman in a wheelchair, or a mom pushing a stroller could have come in and required the use of the larger stall - but that's not really what I'm trying to get at. In that moment it felt like she was waiting for me to give her the "yes" or "no" - looking at me expectantly, waiting for me to say something. She also had that look of discomfort that was poorly hidden by the placid smile, an uncertainty of whether or not she would be judged for using the accessible stall. Specifically, whether or not I would judge her because I do require the use of that stall. (The answer is no!) If a non-disabled, or non-wheelchair-user came out of that stall (and in this hypothetical situation I am not present) - would that same woman hesitate to use the accessible stall? My educated guesstimate says "no."
Though quite opinionated, whether others choose to use the accessible stall when it's the only one available isn't really an issue I feel compelled to assert myself. To be blunt: I have more interesting things to question and judge than whatever your bladder compels you to do. Having a disability doesn't mean that my life is somehow lived in a 'morally upstanding and righteous' manner. At all. Like AT ALL! A lifestyle of adapting to challenges does not somehow give me access to a life of clarity, and knowing what is right vs. what is wrong. (Never mind a life of 'really appreciating life' because it's assumed I am constantly breathing in the air of morally sound fumes, and butterfly farts.)

Besides I only judge women who use the accessible stall for the sole purpose of changing outfits. When I can clearly see you kicking on and off five different pairs of shoes, and bulging shopping bags are on the floor, and whenever I can see your feet jumping up and down to get in those skinny jeans - my bladder hates you a little bit more with each grunt.

But maybe the woman was teaching my own moral compass something: just because I expected and assumed she would behave a certain way, isn't necessarily right for me to have that assumption and expectation in my mind. Maybe my moral compass could have used a little tick in the 'right' direction from her actions.

Guest Blog: Trick Mirrors

2013-04-04T08:00:00.000-04:00

This is a guest blog post from my friend K who talks about her ideas of being different and seeing different. She is much more gutsier than me when it comes to physical appearance, so I'm glad that I have someone a little more willing to let us in on her thoughts on such tricksy topics.
--

My entire childhood was spent trying to fit into a world that was forever screaming at me that I was different and that I would never fit into it. Growing up, I was mainstreamed as a kid with a physical disability into a world of non-disabled peers. I struggled socially a great deal especially in high school where I faced the most alienation I have ever felt in my life. I was different and chronically ashamed of my disability for making me different. Although my disability, to me, was clearly the root of the ignorance I felt from my peers, I still found myself dealing with a peculiar consequence that I blame on trying to fit in to a world that appeared to function in a way that didn’t want me.

Having a physical disability among a sea of non-disabled people can greatly alter one’s perception of themselves. I grew up doing everything in my power to be like my non-disabled peers. In a lot of ways, my quest for normality resembled that of any child trying to fit into the cookie cutter society we live in, except when it came to my altered perception of myself. By the time I accepted my disability as something that was truly apart of my identity and something that I never needed to be ashamed of, I had created a non-disabled perception of myself. In my head, I had the appearance of a non-disabled person...

If this makes me sound crazy then let me go on to say that this image I had of myself was that of my personality, and not so much that I thought that was what people actually saw. But to me, this perception was so powerful that when I looked at myself in the mirror, sometimes still even to this day, I’m shocked by the person that stares back at me. I’m taken aback by just “how disabled” I look and that this is how people actually see me. Involuntarily, I usually straighten up my terrible posture and elongate my O.I.-riddled-lack-of-a-neck. Sometimes I find my reflection so amusing I sit there for far too long, continuously making myself laugh by making myself look more distorted than I actually am. Eventually though this goes away, and I get used to the person staring back at me, actually appreciating her uniqueness. The phrase, “it could be worse” often comes to mind and then I start to feel guilty about not always being positive about my physical appearance because yes, it could be worse but this is what I have, and I remind myself that it’s time to get on with my day.

A Close Look at Staring

2013-04-03T08:00:00.000-04:00

Maybe it bothers me because I am not comfortable with my physical self, not completely anyway.

Although I have written before about what I would like to tell that other person who is staring at me, and what I actually do tell that other person who is staring at me - I don't think I have written about why exactly it bothers me. So that's why I started off with the sentence that I did, just to .. you know.. get it out of the way, and to just put it out there first.

When people stare at me I feel wrong and out of place. Let's be very clear right now: It isn't that I don't like knowing that I am different (and that others notice that I am different) - because that is not the same as feeling wrong. In my opinion feeling wrong is a much worse feeling than being different.

Being different isn't really something that is new to me. I have more or less always known this and it's just what my life is. It hasn't always been easy, but at the very least I have always known what I am getting myself into when it comes to being different. I've had at least two decades worth of practice at being different, and probably many more years of it to come! I have had practice at figuring out how to be different, how to enjoy being different, how to be comfortable with being different, how to fail at being different, how to find others who are also different.. the list goes on. What I am trying to say is that I have had the privilege, and support around leading a lifestyle that is different from the majority. And on most days I am fine with it.
But when it comes to feeling wrong because someone is staring at me - there isn't always something that I can do about it...other than to sit out the feeling. Wait till that person continues walking on. Wait till they stop staring. Wait till I get used to something that.. honestly.. I wish I didn't have to become accustomed to. Or just ignore them - but that feeling, at least some residue of it, still leaves even some tiny tiny trace of it inside of me. I can adapt to being different, but I haven't always been great about adapting to feeling wrong. In fact I don't even know if I ever will be able to!?

I know, I know, I know that when people stare they don't usually intend to give off the impression of making me feel wrong. And because I like to give people the benefit of the doubt, I am sure most are just curious and maybe if I stopped to say "hi" the majority of those who stare at me are probably very nice! But that doesn't change the fact that initially they still make me feel wrong. Like one of those pictures little kids work on that ask them to figure out "what doesn't belong in this picture?" And usually in instances where I am being stared at the answer is always: me.

Here's why I think 'feeling wrong' when I am being stared at is not a reaction I want to be having:
When my friends who are also young women (without a readable disability) are being stared at, they do not feel wrong. Some of them feel like they are being wronged. And others feel like it's something of flattery or a compliment, a positive thing! But rarely have they ever commented on their individual selves as feeling like the error at fault.

To get back to where this post began: maybe it's because I'm not comfortable enough with myself in a physical sense, that I feel wrong. My lifestyle of being different has lead to many failures, but also one of some success. There isn't anything wrong about being different. It has been challenging at times, but never wrong. I have yet to find that similar sense of accomplishment in my physical presence in a way that makes me confident and proud of it. Certainly it isn't measured by the relationships I've been in, or even the dates I go on. It's not really found in how many laps in a pool I can do. It's not in way that I can ambulate myself around the house without my wheelchair.

I cringe because there are no answers in this post. I'm not sure where that feeling of righteousness will be found, but I'm pretty sure that continuing my lifestyle of being different will get me there sooner or later. Damn I sure hope so.

Thinking Caps On

2013-04-02T08:00:00.000-04:00

Continuing with my pattern of writing about writing as the first post of each month, I thought I'd tackle the issue of CREATING TOPICS.

When I first began almost two years ago, I had only a vague idea of the content of my blog would be. I knew only this much:
1. I wanted to help other people with O.I. & parents of kids with O.I. by writing about my experiences.
2. I wanted to connect with others who have O.I., and also other bloggers with a disability as well.
3. I wanted to have fun writing about O.I. & other topics related to having a disability.

Armed with only those three pieces I decided to check-out other bloggers out there, those who were both in the O.I. and greater disability community. Many bloggers were parents who used their blogs to update family & friends on the well-being of their kids, health-status updates and other milestones as well. Others were disability community 'thought leaders' who expounded on relevant news articles, and still others were young people who took to the internet to vent and express themselves. The content of the blogs clearly had a wide range that met different needs and readers in their audience.

What I didn't seem to find many examples of were blogs that just wrote about the everyday normal stuff. And around the time I began my blog, I had begun to realize that - at least for me - my disability wasn't some specially compartmentalized / separate aspect of my life. Having O.I. didn't just shove its face in front of me when I broke a bone, and it wasn't something I was judged by based on annual audiology tests. I decided that if I was going to have a blog about living with a disability, I would write about just that: living with a disability. Or at least I would try to.

So I set out to write about topics that everyday people come across. Whether it was school related, social topics, health, family, interpersonal, jobs, etc I made an effort to place my experiences of having a disability in the context of 'normalcy.'
It wasn't always easy to do this, and it still isn't easy. Often I have trouble coming up with topics that are not medically related. Medically related topics is probably the easiest genre to cover because when we think of disability, and writing about our experiences with it - that's where our minds naturally go to. Everyone has a wealth of experiences to share when it comes to living with a disability and managing their health. But if I were to focus on that I didn't think it would accurately reflect where I had placed disability in my life... as usual, I tend to make things harder for myself than I really need to.

This means I spend a lot of time doing what my elementary and middle school teachers had us do when we were stuck: "putting on our thinking caps!" If I were to divide the time I spend on my blog each week, 80% of it is devoted to coming up with ideas. (Once I have the topics in mind each entry takes on average about 10-15 min to hash out. Writing each entry, surprisingly is what I spend the LEAST amount of time on!) It doesn't mean that I sit in front of my computer writing lists upon lists of ideas (though I do do that), it means that since starting the blog I make an effort to be more aware of potential topics. By dividing my life experiences into categories i.e. school, family, personal, etc etc. it makes it easier for me to think about the perspectives that I can take with my entries. When I take disability out of its 'traditional' compartment as related to healthcare - an entire flood of ideas pours forth! From there I have fun running with one of the ideas, and hope that I am helping someone else think about their own life in a slightly different way that they hadn't considered before reading my entries.

9 Things I'd Tell My Younger Self

2013-03-28T08:00:00.000-04:00

1. When your middle school guidance counselor walks into the nurse's office to 'check in on you' after you've had a major femur fracture, and your pants are down to your ankles, and you're screaming as your mom puts a temporary splint on you -- just know that hoping your guidance counselor won't tell anyone about your Snoopy underwear is going to be the least of your worries. I promise you that.

2. When, as a college student, you ask the phlebotomist drawing your blood "is this going to hurt?" And she looks at you like you've got a hundred heads it's because she is probably thinking: girl you've broken bones, this is just a .09 second pinch! So don't be offended when she doesn't answer you and instead jabs you without warning. Just breathe.

3. When the floor below your college dorm catches on fire, and the entire dorm evacuates and you've been told to not use the elevator, just know that it's probably not the greatest time to try sending morse code signals across the quad to your friends outside. Because the campus security officers have probably been trying to contact you on your emergency walkie-talkie, the one that you didn't bother to charge all semester long. Safety first.

4. Even though having all of your friends get into a congo line while sitting in those office chairs on wheels so that you could pull them... down the hill on campus seemed like a good idea to everyone at the time, it probably isn't. Instead it'll probably look like a bunch of idiotic students having too much fun wasting time they should be spending on studying. Don't worry everyone knows that you look foolish and they expect you to. Prioritize fun.

5. That boy who asked you to go to prom did it because he likes you. It's the same reason anyone else would ask anyone else to prom. Don't think too much into it. Just go, make mix CD's for each other, take awkward prom pictures, never look at them again, and breathe a sigh of relief that it's over. You don't need to know the answers to everything. Just enjoy yourself.

6. When you make reservations at a bar in Harvard Sq Cambridge, MA for your 21st birthday and you tell them the reservation is under the name "Sarah Palin" (because you are a wise-ass college senior..), and the hostess taking the order says "can you spell that for me please?" Just know that it's because she couldn't believe her ears, since you and your friends were giggling hysterically into the phone. Also because Cambridge, MA really is that liberal, and you won't know how lucky you were to go to school right near by until you graduated. Do things because you can.

7. When you get your first wheelchair in the same color as your favorite Power Ranger (the pink one), just know that your second grade self won't ever forgive you for it. Because your second grade self has already moved on to Ninja Turtles and Spiderman, and when you are older your superheroes won't change as quickly. That's how you'll know you're getting older faster. Surround yourself with amazing people. Keep good people around.

8. There will be a really weird and scary occupational therapist with the shaved head (she'll remind you of The Witches by Roald Dahl), who will belittle you inside of "The Learning Center" in elementary school. And one day when you're putting the pegs into the holes on the wooden board for the millionth time, you will flip out. You will throw the bucket of pegs on the ground, slam the wooden board on to the floor and scream: "I AM NOT JUST SOME PEG THAT WILL FIT INTO ANY HOLE!"And that will be the end of her. Someone out there is listening to you. Speak your mind.

9. When your shoe laces get caught in the front wheels of your wheelchair yet again it'll always happen at the worst times. It'll happen when you really gotta go to the bathroom. It'll happen when you're just mere feet away from class, and suddenly you're stuck in the hall - awkwardly - and everyone in class is waiting. It'll also happen when you're just about to exit the subway and you're stuck, your ankle yanked by the frayed laces of your sneakers. You won't ever learn. Tie your damn shoes.

No Explanation Necessary

2013-03-27T08:00:00.000-04:00

Several weeks ago I was waiting for the elevator at a train station and an elderly woman approached, and waited for that familiar *ding!* beside me. She seemed a bit unsteady on her feet and was carrying heavy bags loaded with odds and ends. My city-dweller-radar told me that she might be feeling unwell, or otherwise not necessarily be of a sound mind. She gave me a once over and then mumbled, while looking down at my legs "what happened?" Just as I was about to respond the elevator doors opened and I entered, pressing the Door Open button while she shuffled inside with me. She asked me again, still, looking down at my feet "what happened?
Uncertain of how much she would be able to comprehend, but also certain that the doors would open again in ten seconds - I said, "I was just born this way" with a shrug. Because in ten seconds I made an educated gamble that I probably would never see her again. Even after I told her my answer she repeated her question, in the same muffled and confused manner "what happened?" I took a deep breath in, the kind you do when you try to find some crumb of exasperated patience somewhere in your Friday afternoon at 4:30PM, and I said "I just have trouble walking." All the while silently pleading to the Elevator Gods that the doors would open. They did, but not before she asked me once more: "what happened?"
I sped out before the doors even opened their full width and felt a rush of freedom. It wasn't the freedom from the awkward encounter, it wasn't the freedom from being in a smelly train station elevator, it wasn't even the freedom from her confusing demeanor - it was the freedom from having to explain to someone "what happened."

The point of this snippet is that I realized no one really explained to me here's how you decline talking about your disability, or medical condition.

In school and at home we are taught "how to say 'no'" to strangers, to unwanted approaches, to shady characters, to negative peer pressure, to unrequested solicitations etc. But, at least for me, I was never taught how to say "no" to the question "why are you disabled?" There are a couple obvious answers to this: First of all, as children we are often surrounded by adults who explain in some way to others why we are disabled. I would think that in this way the process of explaining appears natural to many of us. Also because adults in our lives did it, there is probably this (however childish) idea that 'it is the right thing to do.' Secondly, there might be some component of protection and security for explaining. In my experience explaining that my bones are fragile is not just a way to educate others, but it's a survival technique that I have used countless times to protect myself! To prevent harm from coming to me, to avoid pain! This is not a terribly revolutionary idea to wrap our minds around, right? Lastly, and I think this is only true in some instances -- 'justifying' our existence somehow makes us seem "right" as opposed to wrong. Whether the explanation is made out of a sense to answer someone's question, or to clarify confusion we are 'right' simply in the act of closing that gap due to their misunderstanding.

Despite all of these practical reasons for our reasons that we give, the option to "say no" always exists - and it should always exist. I'm not positive that young kids with disabilities are necessarily taught this, but in my opinion I think it's important that all of their options are made clear to them. No child should ever feel pressured into explaining their disability to anyone, but I can't tell you how many times I have felt that way because no one told me I had any other choice. In the same sense that we are taught what appropriate and inappropriate acts of physical contact looks and feels like, we should also learn to recognize that uncertainty in our gut when someone asks "what happened?"
For me it's the onslaught of questions that come to mind: who are you? Why do you want to know? Why do you need to know? What are you going to do with me? If these answers are not immediately clear to me, then I begin to proceed cautiously with the words that are about to come out of my mouth. It is also this sensation of fear edged with creepiness that lets me know, this is probably not someone who needs to know the answer because they may not use the information in your best interests.

Look, all I am saying is that we have options and the most freely available among those options to us is the way we communicate to one another who we are. Let's not leave any of those behind because the consequence may be that sometimes even the right words can feel so wrong.