My Wheelchair is Not My Halloween Costume

A note: This piece is written from the perspective of 12-year-old Emily, who was still quite conscious that a wheelchair itself is not a costume, and it’s not something to be questioned or mistrusted. My disability is simply another part of me – a real part of me. My goal with this is to point out unnecessary ableism in a way that hopefully brings some levity and humor to the situations I experienced. Happy Halloween, everyone!

The year my dad hit the curb with my wheelchair and I landed in a heap of crushed fairy wings should have been my first clue that Halloween was not my holiday. But when you’re eleven years old, no candy gets left behind. You just have to pull yourself up by the fairy wing straps and persevere.

I assumed the next year would be business as usual and when October came, I waited by the phone for my friends to invite me out to the trick-or-treating big leagues in the wealthy neighborhood on the other side of town. I could practically taste the full size candy bars I’d be getting in my plastic pumpkin basket…but the taste went from Hershey’s sweet to Warheads sour when I got out there and saw myself surrounded on all sides by massive grand staircases leading up to spooky decorated mansions. No Halloween princess I knew could clap her hands and have servants carry her up the stairs.

So my friends brought the candy to me. And yeah, it was almost as good as having servants…at least until my friends were accused of trying to score extra candy by lying about their friend in the wheelchair who couldn’t climb the steps. Uh, hello?  I’m right here. Silly Halloween candy police. Are you implying that little girls who use wheelchairs can’t have friends?  Well, guess what, candy police?  I’m here to tell you that people with disabilities do more than just live inside the imaginations of candy-hoarding twelve-year-olds.

But being a real live twelve-year-old girl in a wheelchair was hard sometimes, you know?  At least that’s what I was told, since the man at the next house over felt so bad for “that poor girl in the wheelchair, so please take some extra candy for her and God be with her.” Well, that was awkward, I thought, but thanks for the candy, I guess. I mean, if people are so convinced that my life is so hard, I must have deserved an extra Snickers, right? So I should just stay quiet and take the supposed perks of disability wherever I could find them, right? And for that matter, mister “God be with me,” shouldn’t I just be grateful that my parents let me out of the house like all the “normal” kids?

Well, I was grateful. But not because I got to taste the candy of “normal” life. I was grateful because I managed to finish enough homework for my parents to take me trick-or-treating. Pretty “normal” twelve-year-old life, don’t you think? I had earned my right to go about filling that silly plastic pumpkin basket, happy to be out like every other kid on Halloween.

And then we came to a house with no steps! Jackpot! I rolled up feeling super confident in my princess costume, crown on my head, and just as I held out my pumpkin I heard:  “Oh, I get it! You’re in a wheelchair! You’re right out of the hospital! Cool costume!”

REALLY, mister?, I thought. Did you not get that I’m a princess? I mean, I know I’m in a winter coat, but there’s a bright pink crown on my head! I can pretend to be a princess, but I sure as hell wouldn’t dress up as a girl in a wheelchair. Don’t get me wrong; it’d be nice to attach my crown to my head and my wheelchair to my butt once a year. It’d be nice to take it all off at midnight on October 31st and put it on the shelf ‘til next Halloween. But my wheelchair is not a costume. I can’t put it on and take it off like fairy wings or a princess crown. And that’s fine with me.

So accept me as I am. Accept me as a fairy or a princess. And please, don’t patronize me. Just share your candy.

Tags:

Comments

  1. That was great! I especially liked the paragraph where the guy feels sorry for you. I love the idea of a disabled person having to hear from someone else that their life is hard. As an adult, assumptions like that offend me on an intellectual level. But I remember being a kid when sappy comments like that man’s just perplexed me … like “What the heck is he talking about?!”

  2. Found your blog via LoveThatMax and I’m so glad I did! You are an incredible writer, and I totally agree with everything you said…I am a college sophomore with cerebral palsy, and I’ve dealt with plenty of patronizing people as well. They think they’re being nice, but I don’t want pity or condescending smiles or extra candy. LOVE this — I read it twice and I can’t wait to read your other posts! Keep writing…you’re making the world a better place with your words.

    1. I’m incredibly excited that you stopped by to read this, and glad it gave me a chance to discover your blog. Thank you so much for your warm words! It’s unfortunate, but the experience of condescension or being patronized is all too often a common bond in the disability community.

  3. HI Emily! I love you posts. Your writing is so visual. This one made me laugh– I hope that’s ok, I also cringed at the cool wheel chair costume comment. You sound like such a precocious child. My niece Nadine is 6 and has spina bifida. I see a lot of her in this post. She’s a tough fairy princess that laugh’s when the boys can’t keep up with her wheels. You sound like a woman she could learn a lot from.

    1. Hi Jessica! It’s more than okay that you laughed! It makes me smile to know I was able to share a laugh 🙂 I’ve definitely been told a time or two I was precocious as a little girl! And speaking of, your niece sounds my kind of girl! I bet she’ll grow up to be fierce!

  4. Found you through SITS and so glad that I did! I loved this post. My daughter has an invisible disease and just wants to be treated normally as well. I will definitely be following your blog and it just might become a favorite 🙂

    1. Hi Jennifer! Really glad you stopped by. I will definitely be following your blog now! Also, it seems no matter what kind of disease or disability a person has, we all have a common bond through how we want to be treated.

  5. I would give you all the candies! but not because you’re in a wheelchair, just because you’re funny!
    And because you are a better person than I – I was a brat when I was younger (and it still comes out on occasion haha) I would’ve
    gotten way too sassy for my own good and ended up with an empty pumpkin because of it. ;

    1. Haha, this cracked me up! I assure you your basket wouldn’t be empty, because I’d give you candy for making my day. Also, I definitely had my sassy moments when I was younger. (Still do, but don’t we all?)

  6. Oh the patronizing! My disability is invisible but when I disclose it, I get a lot of the “how do you do it? I could never live your life!” People think it’s a compliment I guess, but it’s just really awkward and annoying.

  7. UGH – so annoying that he said you must be in some hospital patient or whatever! People can be so just DUH at times. We took my son trick-or-treating tonight and when he DOES talk, he’s super quiet and shy. One woman stood there for like 4 minutes saying “what do you say?” and he’d (very quietly) say “twick tweet” and I don’t know if she didn’t hear him or what but seriously, finally I just yelled that he’d said it and maybe she didn’t hear it! Ugh! Keep writing. Keep spreading your words.

  8. I don’t know if I should laugh or cry at this. I think we are all so clueless sometimes, but who would ever say such a thing to a little girl in a wheel chair?

    I’m glad you survived the cruelty that can be dealt out by folks who just don’t know better. Even happier, that your sense of humor is intact.

  9. A few years ago, I was a martial arts student. This essay reminds me of one night, around Halloween, when I was waiting at a curb outside of my apartment for my ride to take me to class. I was afraid I’d be late, so I was already changed into my uniform. A passerby approached me and asked if I was going to a costume party.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.