Tuesday, January 20, 2015

Walking Is Overrated: Learn to Love the Wheelchair



I’ve been reading a lot of comments from parents of children with CP lately to the effect of “I’m trying to keep my child from needing mobility aids” or “I’m trying to keep my child out of a wheelchair.” Nothing makes me angrier and sadder than parents trying so hard to keep their child walking independently that they deny their child the use of mobility aids.  Mobility aids are life changing.  I know, because they changed my life for the better.

From the age of three, when I took my first steps without a walker, to the age of twelve, I walked completely independently.  I spent all my elementary school years, as well as two years of high school in a large school spanning six grades, walking independently.  I always had poor balance and tired easily.  I fell often.  The only mobility aid I used was an uncomfortable fold up transport wheelchair that my parents had to push.  I tried to avoid using it whenever possible.

Then, when I was twelve, a childhood friend, who is also disabled, told me I should start using a forearm (also called Lofstrand, elbow, or Canadian) crutch.  She used one and found that it really helped her.  I gave it a shot, and I never went back.  At first, I only used it for long distances.  After two difficult years, I decided to use it in school.  I was terrified what people would think.  I didn’t want questions or pity.  I just wanted to get on with ninth grade and not get squished like a pancake.  I was pleasantly surprised.  There were some questions and comments the first week or two, and after that, my crutch was just accepted as part of me, with a few exceptions.  I used my crutch in school until I graduated high school.

Soon after I started using a crutch, I began thinking seriously about college.  My older sister had just started college, and I was forced to use my transport chair as my parents and I joined her on campus tours.  It slowly dawned on me that there was no way I’d be able to walk around a college campus.  In order to go to college, I would have to get some sort of wheelchair that I could propel myself.  A manual wheelchair was almost immediately ruled out, because even if it was lightweight, I wouldn’t have the arm strength to push it all around a campus.  I needed something portable, because my parents both drove sedans and weren’t willing or able to buy a lift-equipped van.  My physical therapist recommended a mobility scooter, and so, after extensive research, my new 3 wheel scooter from Pride Mobility arrived in my backyard the summer after eleventh grade.


My scooter and I, circa 2009.
[Image description:  Me sitting on my scooter outside.  My scooter has red panels on it and I’m grinning and wearing a yellow “Honk!” t-shirt and a pink and white baseball cap.]

I spent that summer and the following year learning how to drive my scooter, mainly by crashing into things and tipping over.  By the time I started my freshman year of college, I already had an idea of how the scooter was enhancing my life.  Over the next three years, my scooter and I became somewhat of a symbiotic being.  I knew it and its quirks intimately.  It grew and changed as I did, acquiring many dents, scratches and a seatbelt, as well as a cupholder for a short time, before a particularly nasty fall cracked the cupholder in half.  My roommate even gave my scooter a name: “Bob Scootyscootowitz”. 

Without my scooter, I would have never been able to handle college.  It acted somewhat like a second, more functional pair of legs.  I was able to zip from one end of campus to the other and back again several times in one day.  I was able to carry food on my lap and wander around the bookstore or the library during my free time.  On the weekends, my friends and I would walk and roll up Main Street and waste several hours in CVS and Dollar Tree.  Without my scooter, I would have been limited to my dorm and the immediate surrounding area.  My scooter allowed me to be a “normal” college student living on campus.  I feel confident in saying that my scooter played a large part in my graduation, summa cum laude.  If I had been forced to walk to my classes all day, every day, I would have undoubtedly been too fatigued to concentrate and my grades would have suffered.
Now that I’m back home and I have a new power wheelchair, my scooter doesn’t get much use anymore.  But my mobility aids continue to enhance my life.  I now walk independently inside the house and use a cane, a walker, or my power wheelchair or scooter outside the house.  Because of my mobility aids, I have gained confidence that I would have never thought possible just a few years ago.  I travel all over the country giving presentations at conferences.  And because I have a travel scooter, I can still go into any car.  My scooter disassembles into five pieces that can be fairly easily lifted into a regular car trunk.  My mobility aids allow me to have the stamina necessary to travel and enjoy myself.  In short, going “backward” so to speak, in terms of my mobility, has actually been extraordinarily beneficial for me.


Me with my walker, singing my heart out, summer 2014.
[Image description: Me sitting on my walker on a wooden stage singing into a microphone.  I’m wearing a green Disabled and Proud shirt.]

Parents, I beg you, don’t be afraid of the wheelchair.  My wheelchair was the best thing that ever happened to me.  If you even have the slightest thought that a wheelchair might enhance your child’s independence, get them a wheelchair.  They’ll thank you for it later, I promise.

Soon, I plan on writing a follow up post debunking popular myths that parents have about using mobility aids.  Let me know if there are any specific myths you want me to address!

Fist pumping at the Society for Disability Studies conference dance, June 2014!
[Me sitting in my power wheelchair, which has large manual wheels as well, pumping my fist into the air with a giant grin on my face.]

Monday, December 22, 2014

#TheShortBus Flashblog: Notes from a Short Bus Veteran

From the day my mother put me on a bus to a "special needs" preschool at three years old to the day I graduated high school, I rode the short bus.  While my older sister walked down the block to the bus stop, I got door to door service, for fifteen years.  Even now, I use paratransit, a service my best friend Kathleen affectionately calls "the distant cousin of the short bus".  If there's such thing as a short bus expert, I'm probably your girl.

When you ride the short bus, everything becomes intensely personal.  Riding the bus every day with only three or four others, plus the driver and aide, creates a strange sort of intimacy.  Whether you particularly like the others on the bus with you or not, you become a family.  Newcomers are regarded with an uneasy distrust.  The other short bus riders can become your best friends or your worst enemies, sometimes both at once.  Some of my best memories were made on that odd little bus, with our merry band of freaks.  Conversely, so were some of my worst.

Me and my friends Kim and Angelique, short bus sisters, circa 2009.


When you ride the short bus, everything is dysfunctional.  Drivers and aides are not held to the same standards, or do not hold themselves to the same standards, as regular bus drivers.  The bus was often late, with no apology or explanation.  Sometimes they'd veer off the usual route to pick up someone else, or to get coffee, or to do any number of things, again, without a word of explanation.  Sometimes our drivers would just disappear, with a new person in the driver's seat one morning, and we'd be left to deduce whether this was a temporary or permanent change.  Sometimes things would get downright dangerous.  Drivers wouldn't know or care how to operate the wheelchair lift, or how to properly tie down a wheelchair so it won't move when the bus starts moving.  I thank the universe that no one on my bus ever got seriously hurt, but there were more than a few close calls.  I'll never forget one afternoon in high school, when I was the only student on the bus that day, and the driver sped down streets like a racecar driver, while talking on his cell phone.  I cowered in my seat and texted my short bus friends in terror.  They felt guilty for leaving me alone.

But for all the bad apples (and there were many), there were a few good ones.  There were a few drivers who laughed and joked with us.  One driver would go above and beyond his duty, getting out of the bus every morning in the winter to help me down my icy front steps, and making sure I made it up the driveway every afternoon.  The good ones were the ones who regarded us as human.  I shouldn't have to applaud basic human decency, but I do,  So We Transport, pat yourselves on the back.  Out of the dozens of drivers I had over the years, you produced three good ones.  More drivers should be like Patrick, Dion, and Hassan.

For all its failings, the short bus is more than just a joke or an abstract concept for me.  The short bus was where I laughed, cried, and grew.  The short bus was where I began to learn that my education was not valued as much as the "normal" students.  The short bus was where I was able to crank up my iPod and just be myself.  And a few days ago, when I ran into a friend who had rode the short bus with me who I hadn't spoken to in years, we picked up right where we left off.  Because there's something about the bond that sharing a short bus creates that can never be broken.  The short bus left marks on my heart that will never be erased.  I am, and will always be, a proud short bus rider.

An actual short bus that we actually rode, stolen from my friend Angelique.

Note:  This post is part of the #TheShortBus flashblog.  If you'd like to participate, submit your post to https://docs.google.com/forms/d/1uVAbIocjqEaIfnEI44I1IIhgm5mLjEr6Kf1lNktvn3k/viewform by January 5th, 2015.

Wednesday, October 1, 2014

On World CP Day

It's World Cerebral Palsy Day.  Unfortunately, the day snuck up on me this year, so I didn't have time to do a slideshow as I have in past years.  You all will have to content yourselves with a post instead.

I have CP.  (Or I'm a Ceep, but sadly that term has yet to catch on in mainstream dialogue.) I have a Bachelor's Degree and am pursuing my Master's.  I am in a committed relationship (with another Ceep, but we can have relationships with able-bodied/nondisabled people as well!).  I have presented at conferences all over the country.  I generally look like I have my shit together (whether or not I actually have my shit together is an entirely different story).  None of this, in any way, means that I have "overcame" my CP, as if CP is a hurdle to jump over and, once cleared, is simply a distant memory.

I inhabit my CP body every day.  Contrary to popular opinion, this is not a tragedy.  I move about as comfortably in my body as any of you do in yours.  Now, this isn't to say that it isn't hard sometimes, or that CP is all sunshine and roses.  I spent half the night last night sleeping on the floor, because the lack of space on my bed to stretch my legs properly was preventing me from falling asleep.  I have chronic pain and fatigue.  But this is my body, as odd and "abnormal" as it is, and I wouldn't trade it for the world.

Without CP, I would not have discovered the bright and vibrant disability community.  I would never have met my best friend or my boyfriend.  Come to think of it, I would never have met most of my friends.  I would never have found my passion for disability studies and justice.  I would not have started one of the only (if not THE only) groups on Facebook exclusively for people with CP - a group that has over 1,000 members and is growing every day.  Without CP, I would not be me.  Without CP, Cara would be someone completely different.

I am not a target for your misguided inspiration.  I do not need any God to bless me.  I am a 22 year old young woman living her life to the fullest and that, in itself, is a radical act.

[Image description:  My boyfriend and I on the Coney Island boardwalk.  We're leaning into each other and holding hands.  I'm white with light brown hair with sunglasses pushed up on top of my head, wearing a lime green t-shirt and a denim jacket with denim shorts and hot pink Crocs.  My boyfriend is Hispanic, wearing jeans and a dark blue Doctor Who TARDIS shirt with a red baseball cap worn backwards.  We both are using power wheelchairs.]

Friday, August 1, 2014

An Open Letter to The Jekyll and Hyde Club in Times Square, NYC

To Whom It May Concern at the Jekyll and Hyde Club, Times Square, New York City,

Yesterday, (July 31st, 2014) I attempted to dine at your establishment with four friends.  I had heard good things about Jekyll and Hyde and thought it would be a treat, especially since one of my friends was coming from out of town and we were searching for tourist attractions.  I was disappointed and appalled with my experience - if an "experience" includes not even being able to dine at your restaurant.

Four of the five of us, including myself, use power wheelchairs.  We were greeted at the door by a hostess who very politely showed us to the lift elevator hidden behind the bookcase by the entrance.  The lift was too small to fit more than one of us at a time, so we individually took the lift upstairs, sent the lift back down for the next person, and so on.  As you can imagine, this was a laborious process.  Once upstairs in the gift shop area, we were shown to the elevator to the dining area.  Once again, this elevator could only accommodate one wheelchair user at a time.  We repeated the process of going upstairs - one at a time.  This all took a good deal of time.

I arrived upstairs to find my friend looking frustrated.  He explained that the staff did not have room for all of us.  There were two waiters trying to move chairs to make room.  One of them asked me: "How many wheelchairs?  Two?"  We calmly explained that no, there were four of us using wheelchairs.  They told us that they didn't have room and asked if we could get out of our chairs.  Disregarding the fact that getting our chairs would have been varying degrees of painful, uncomfortable and difficult for all of us, a wheelchair is generally regarded as an extension of a person's body.  Suggesting that a wheelchair user get out of their chair is as disrespectful as suggesting that someone cut off their limbs in order to fit at a table.  Additionally, power wheelchairs can cost upwards of tens of thousands of dollars.  Leaving our wheelchairs would have meant leaving them in a place where they most likely would have been out of our sight and vulnerable to damage or theft.  If this had happened, not only would we have been stripped of our mobility and freedom, but, in the worst case scenario, we would have had to pay tens of thousands of dollars in repairs or for a new wheelchair altogether.  That is not a risk any of us were willing to take.

By this time all five of us had arrived upstairs.  We discussed our options.  At no time did any of the staff ever apologize to us or offer an alternative solution.  We were not valued customers - we were simply an inconvenience.  Eventually, we decided to take our business elsewhere.  We wasted at least half an hour going up two elevators one at a time, only to be told that we were not wanted.  Instead, we took our business next door to Guy's American Kitchen, where the staff were friendly and welcoming.  With tip, drinks, and dessert, we spent nearly $200 at Guy's American Kitchen - money that could have gone to Jekyll and Hyde, if your establishment was more accepting.

For an establishment in the middle of Times Square, where millions of diverse human beings travel every day, the Jekyll and Hyde Club is disappointing, to say the least, when it comes to welcoming disabled customers.  You not only lost the business of five potential customers, you have lost the business of many other disabled people who may think twice about visiting your restaurant after they read about the negative attitudes perpetuated by your staff.  I plan on leaving negative reviews with a link to this post on Yelp and other review sites so that other disabled people are warned before they encounter the same sort of discrimination we were subjected to.  Disabled people are our nation's largest minority.  If you want to receive our business, I suggest you train your staff better in matters of diversity.  Until then, you will not be receiving one cent from me.

Sincerely,
Cara Liebowitz
Blogger, That Crazy Crippled Chick
caraliebowitz@gmail.com

Sunday, July 27, 2014

The Power of Choices

When I go to a movie theater using my chair or walker, or when I go with wheelchair using friends, we usually can only sit in three or four different spots.  In smaller movie theaters, there is often only one spot that can accommodate a wheelchair user, resulting in an awkward dance of politeness or perhaps a duel to the death when - god forbid - there's more than one wheelchair user wanting to see the movie.  After my best friend (who blogs at The Squeaky Wheelchair) was forced to wedge herself sideways behind the back row of seats, nearly knocking off a fire extinguisher in the process, because the lone wheelchair spot was already occupied, we resolved to never go back to that local theater again.  But others aren't much better.  Sometimes the wheelchair seats are clustered together in one row, making those who need accessible seating feel like we've fallen into some sort of cripple ghetto.  Other times, in big multiplex theaters, there are theater rooms that aren't accessible (Roosevelt Field movie theater, I'm looking at you).  If the movie you want to see is in that theater, sorry, you're out of luck.  And of course no one ever thinks to mention when you're buying your ticket that the theater you're going to is up a flight of stairs...

It's not just movie theaters, either.  When I get on a public bus with my wheelchair, there is a grand total of two spots where I can sit.  Both of those spots require that the bus driver ask anyone sitting in those seats to move and then fold up the seats to create space for a wheelchair. People are usually quite annoyed when they are asked to move.  It's almost like there's no other spot for them to sit....oh wait, that's me!  I don't know of any other minority group that has to force people out of their seats just so they can ride the bus.

And if I'm traveling with, say, my boyfriend, who is a fellow wheelchair user, the absurdity is doubled.  Two wheelchair users, two wheelchair spots on the bus.  You do the math.  There is no room for error, no room for any other wheelchair users.  My boyfriend and I have sat at a bus stop and waved two perfectly good buses on without us, because the bus already had one wheelchair user on board.  On the flip side, I have seen drivers turn down other wheelchair users at a stop because they already had two wheelchair users taking up the spots.  And I have felt an irrational squirm of guilt for taking up one of those precious spots.

Sound familiar?  Black people didn't stand for being relegated to the back of the bus.  They weren't simply grateful that they could ride the bus at all.  They recognized what was happening as segregationist and discriminatory.  And they made change happen.  Have we become so complacent in the post-ADA generation that we fail to remember that we deserve the same rights as everyone else?  Have we become hangers-on, clutching at the coattails of the able, thankful just to be breathing the same air as them?

The power of able privilege is the power of choices.  You can sit in this seat or that seat.  You can sit in the front of the bus or the back.  You can go to that subway station or this one.  You can watch this movie or that one, never mind if they have captions or not.  You can read that book or this one, regardless of whether the book is available in an alternate format.  You have the luxury of moving through a world that presents an endless array of choices to you.

We have fought for and won our rights.  Now it's time for the post-ADA generation to take up the mantle of another fight - the fight for the right to have choices.

Thursday, July 24, 2014

The Trouble With Ableist Metaphors

"I was blind to the consequences."

"You need to learn how to stand up for yourself."

"Her pleas fell on deaf ears."

I'm not usually one to language police other people.  There are a few terms that I absolutely despise (such as the r-word or "wheelchair bound") that I will usually make a fuss over.  Then there are terms like "handicapped" or "special needs" that make my skin crawl, but aren't bad enough, in my mind, to the point where I will speak up.  I need to choose my battles carefully, and despite being a word nerd (I have now spent several minutes pondering over the grammatical structure of this sentence), language usually isn't one of them.

But I was struck recently when, in the course of emails back and forth about inspiration porn and ableism, a colleague used the metaphor "I was blind and now I see."  I'm sure he had the best of intentions and didn't even stop to consider the ableist nature of the metaphor - but that's sort of the point.  Ableism is so incredibly deeply ingrained in our culture that people use ableist language - yes, even people who should know better, I fully admit that I probably invoke these metaphors far more often that I should - without a second thought every day.  I'm not sure that happens with any other form of oppression (feel free to correct me if I'm wrong).

But wait!  I should stop being so literal, shouldn't I?  After all, it's just an expression!  No one actually means them!  Which is all well and good, but as my dear friend K says often, intent is not magic.  But the problem comes when we take both the literal and metaphorical definitions and step back to critically analyze what we mean when we say such things.

The problem with metaphors like "I was blind and now I see" is they overwhelmingly position the disability as the negative.  When you're "blind to the consequences", when your voice "falls on deaf ears", when you need to "stand up for yourself", those are all negative situations that should be rectified.  In contrast, having your "eyes opened", being "all ears" and "standing your ground" are situations that are generally applauded.  Sadly, I never hear anybody being told to "sit their ground".  Disability is synonymous with lack of insight, inability to communicate and not having the power or the intelligence to have agency over your own life.  Sound familiar?  Those are all stereotypes that are associated with all kinds of disability.  And now you start to see where, perhaps, the metaphors came from.

I'm not saying that everyone should automatically cut these types of metaphors out of their vocabulary.  What I am saying is that people need to stop and really think about their intended meaning - and then think about how the metaphor portrays disability.  If the metaphor is one that positions ability as positive and disability as negative, you may want to consider another term.  Because that's the great thing about language - the possibilities are endless.

Wednesday, July 2, 2014

R-E-S-P-E-C-T: Find Out What It Means to Me

When I was being forced out of the education program at my school the spring before last, during a two hour meeting with both my adviser for the field experience portion of the program and my overall adviser, I was told, among many other things, that I was, and I quote:  "on the verge of being disrespectful to two women in this room who have PhDs in Education".

Disrespectful!  They were the ones telling me to change my major or graduate without teaching certification.  They were the ones telling me I was "belligerent" and that my students would not respect me if I could not stand on my feet to teach a lesson.  They were the ones who had upset me so much that I spent the entire meeting sobbing.  They were the ones who were effectively telling me that I could not be a teacher.  And yet, somehow, I was the one being disrespectful to them.  It was like their magical PhDs somehow shielded them from being the ones in the wrong.

Let me be clear, respect is a two way street, in my view.  No one is automatically entitled to respect, regardless of age, job position, or familial relationship.  Or maybe it would be better to say I respect everybody - until they disrespect me.  Once you disrespect me, all bets are off, because you have shown you are not deserving of my respect.  I will not waste my respect on someone who doesn't deserve it.

And in many ways, my views on respect are shaped by being a woman with a visible disability.  Society at large does not respect me and my body.  I am expected to submit meekly to the non-disabled population, who, after all, are just trying to "help" me.  I am expected to be grateful when I am able to go out and live my life like any other 20-something, because to accommodate me means work for other people.  Yesterday, while my boyfriend (also a wheelchair user) and I were out and about in NYC, we experienced so many ableist microaggressions we lost count of how many there were.  These included, but were not limited to:

  • going into my school and having the security guard ask us if we were going to disability services, despite the fact that I had said at least twice previously that I wanted tech support.
  • being interrupted in the middle of a conversation with another friend (also a wheelchair user) and being told that if we moved, we wouldn't be blocking the way (note that no one else was told they were blocking the way)
  • approaching a subway elevator and having a woman who was also waiting for the elevator go in a shocked tone:  "Oh my god, two of them!!!" When I pointed out that wheelchair users do actually go places (shocking, I know), she tried to defend what she said.
  • being told, randomly, in the subway station, that I would be cured if I ate natural foods
(On a side note:  My last boyfriend, while also disabled, visibly presented as much more able-bodied than my current boyfriend.  It's interesting to see the difference in reactions.)

This all happened within the span of 12 hours, and while yesterday was a bit extreme even for my life, these type of things happen to me EVERY. DAY.  You can see how that might wear down one's patience.  Hence, why I may not always come across as the nicest or most respectful gal on the block.

Respect, to me, is earned, not given.  I feel I have a right to be somewhat wary of people in a world that does not view me as a human being with the same feelings and desires as anyone else.  I am, of course, always joyful when it turns out I was wrong, and someone treats me well.  It is sad that I have come to view basic human decency as a cause for celebration.  Perhaps I am a bit jaded.  

You want to be respected?  Show me you respect me first, because I cannot operate on the assumption that you respect me when so many people don't as a matter of course.  I don't care who you are.  If you respect me, I will respect you.  Simple as that.