Showing posts with label disabled 20something. Show all posts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm at that weird age where I really shouldn't be going to a Children's Hospital anymore, but since I've been there since birth -- and know pretty much everyone, even the Big Apple Circus Clowns (on a first name basis..) I still go. They know me and I know them. This isn't just a matter of comfort and familiarity, it's a matter of logistical ease. As I'm sure many of you know, explaining what O.I. is and knowing precisely "this is what has worked for me in the past.." and "this is what has not worked for me in the past..." matters a lot! 

It matters not only in the sense of saving time on those hour long healthcare visits, but it also matters in the sense of how much pain will I be in, or how high will my blood pressure be after I finish giving Dr. So-and-So a piece of my mind.
When I was little I remember my parents having to go to a specialist for nearly every part of my body. While my brothers could just receive a clean bill of health from their pediatrician for the start of the school year, I would have to make the rounds to each floor of the hospital. At the ages of five and six I thought it was fun to pronounce words like: "audiology" "ophthalmology" and "radiology" -- they were like Dr. Seuss rhymes to me. (More evidence that I am a very deranged person perhaps..) My mom would somehow finagle my appointments so that they would all fit into one day, a cooler would be packed with snacks and sandwiches, my backpack would be stuffed with summer reading books, I usually brought along my favorite toy (the etch-a-sketch) - and it would be a picnic at the hospital.
Maybe it is because I am slightly weird but I really did enjoy hanging out at Boston Children's Hospital. Every possible surface is covered in a swath of bright child-friendly colors; the patient entertainment center has arcade games to play for free; hospital clowns roam the halls (and seemed to follow me wherever I go..); the t.v. in the waiting room was always tuned into Clifford or Wishbone; there were endless pages to color, and elderly volunteers passing out stickers in the hallways; in most of the waiting rooms there are bookshelves lined with books that patients can take home. Honestly? If you take away the needles, the white coats and scrubs -- Boston Children's Hospital is like a glorified day care center. It is fun! (Please note the use of present tense in that last statement).

In other words, in terms of my health care I have been ridiculously spoiled. I once went to an appointment with my younger brother and was shocked by how silent his doctor's office was. In comparison, his doctor's office seemed frighteningly stiff and serious; I decided at that point that I never wanted to stop being a patient at Children's Hospital.

I am no expert in healthcare options but I assume that because O.I. is generally diagnosed at birth, or during childhood years - it is therefore considered a pediatric condition. This makes sense for why many of the specialists that I see are at Children's Hospital -- they know what it is (usually), and know how to treat it. But medicine is changing, there are now many adults who have O.I., those patients who were once diagnosed with the pediatric brittle bone condition are now grown-up adults...myself included.

My orthopedic doctor has been my go-to guy ever since birth. Among my family we have tried many times to play the "guess how old Dr. Shapiro is?" game and we are never certain, and he's not the type of guy to give away his age. The general consensus is that he's old, probably around his 60's at this point - and maybe even close to retirement age? *Gasp* I dread that day when he tells me he is going to retire.

Who will I go to? Will I have to explain how exactly to hold my broken leg? Will I have to explain just the right combination of pain medications to prescribe? Am I going to have to tell someone totally new about why I hate wearing slings? Will this new doctor have a new attitude towards surgeries and operations that I don't agree with? Will Dr. Shapiro's replacement be as willing to write the kinds of medical-need notes that I request? Is he going to be as flexible about allowing me to call his pager directly? There is so much that I dread when the moment comes. I hope it doesn't happen for a very, very, very, very long time. Dr. Shapiro is like my second dad, I wouldn't know what to do if he suddenly decides he wants to retire to a life of watching hockey, and return to Montreal.

But of course I won't deny the fact that there are some parts of me that do require adult health care; and a few of my physicians at Children's Hospital have been kind enough to nudge me in that direction "Sandy, you know, you're not a child anymore -- although of course we would be happy to continue to see you, and we are not trying to push you out of the system.." I appreciate their kind nudging into the more boring adult hospitals. I will miss the sounds, the noise, the colors, and yes - even the clowns. But I am slow-creeping upon a dreaded realization that a part of being an adult also means knowing what is right for you, and accessing what is right for you. Taking the initiative to say "okay, I am no longer a child and want to be treated as such.." means much more than being disgusted when we are spoken to in a condescending manner. It means more than getting upset when I am asked "where is your mother?" It means recognizing for myself what it means to be an adult inside and out.

So what I mean to say is.... I'll get there eventually. Sooner rather than later.

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

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

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

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

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

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

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

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

What's on your list of perks?? 

Most of what I have written so far have been stories from my childhood or general reflections. Since recently turning a year older though I think I am well enough into my 20's to be able to say 'something' about it. (But truth be told probably in a year I will read this entry and think... umm girl you were totes wrong!)

I should probably start by describing my friends I ended my teenage years and began my 20's with:

This crowd of incredible, inspiring, self-motivating, intelligent, caring, hysterical, talented, and compassionate hooligans are the folks I went to college with. And they are truly something. I know, at least I hope, we all have friends that we can say that about but I'm pretty confident that if YOU readers... from Australia, India, Nepal, South Africa, Japan, Taiwan, and every other corner of the world were to meet my friends, I am pretty sure you would hit it off with them too. They're just ridiculously great and I love each one of them for their nuances and quirks.
It wasn't until recently that I realized the group of friends I made in college are not your typical 20-somethings. Most 20-somethings are not all in grad school with a desire to help others, and to do so with an equal hand and knowledge of academia, compassion, and a sense of moral right. I think this has a lot to do with the college we went to -- a small school in Massachusetts that requires all of its graduates to hold an internship, and by the time we graduated .. let's just say that the words 'social justice' or 'race, class, and gender' were concepts, theories, and experiences all of us have a wealth of information to speak on. They are not afraid to be out of their comfort zones because we went to school with an expectation that you should be out of your comfort zone, we volunteered not because "it's something you should do for your resume" but because we were curious and interested about the larger issues in our volunteer experiences. They are go-getters to the max. I truly believe that nothing will stop my friends from achieving their futures because they proceed with a determination and certainty that "I am doing this because this will help me reach my future goals, and I care about what I am working towards."

These folks are also the people I shared my first drinks of alcohol with, told me what to do about boys, we helped each other through our first 'professional' experiences at 19 or 20, helped each other with our resumes, supported each other's student activities events, competed for leadership positions around campus, we stayed up all night downing jello shots and racing through papers... and the memories of "growing up" (let's be honest here, I still am) together could go on and on. Towards the end of school and as we each went our separate directions (AmeriCorps, PeaceCorps, grad school, fellowship programs, full-time teaching positions, etc.) we all reminded each other that we got to this point because as much as we like to have absurd amounts of fun (and do borderline questionable things ...ahem..that we vaguely remember the morning after), our work and what we are focused on achieving will always come first. And more importantly, we always continue support and help guide one another through this odd phase of our lives. This time in our lives where people expect us to "Enjoy being young! Live for the moment! What are you up to these days? Are you in school? Are you working? Plan your future and career wisely!" It can get confusing to say the least.

So.... uhhhh... back to the original topic of this entry. All of that is exactly what being a disabled 20-something has been like for me so far. Yes I still get stared at, and no I never know what to tell a guy I have just begun dating about "what my 'deal' is", and I'm still learning how to 'network' like a grown-up, and I am still learning when to say the words "Can I give you my business card?" (before or after the goodbye?), and I'm still learning whether or not it's appropriate to talk to my advisers/supervisors about "What did you do this weekend?", and I'm learning how to hold my own at meetings with the 'big-wigs,' and while all of that is happening I am forever trying to keep my family from worrying, and learning about what an accessible apartment really means, ... and on and on and on...

And that's just it isn't it? It just goes on and on and on. I don't have a magical 5 year plan that has been all laid out with bullet points and career objectives (okay, actually I do but it was REQUIRED...And I also learned that just because you have a plan DOES NOT mean you have to follow it!) The point is that being a disabled 20-something, for me, doesn't really seem all that different from being a 20-something in general. There are a thousand things that I am still learning and I am quickly finding that as I am getting older, I never get to choose what I want to learn, because things will happen before I know it and the event or moment will have passed -- and then I'll just be on to the next thing.. and the next and the next. I have options, will I learn it or will I let it pass? Because I'm such a nerd though I have a tendency to do the former of the two.

Will probably turn this into a blog button!