“There’s No Room For You Here.” – On Encountering Discrimination

I have a little tradition to search for handmade jewelry when I travel, usually rings or earrings. It’s my favorite way to bring home a piece of where I’ve been. Since I just visited New Mexico for the first time to join my family in celebrating my cousin’s wedding, I was especially excited to see what I’d find because I love southwestern jewelry designs. My mom (who also uses a wheelchair), my dad, and I ventured to Old Town in Albuquerque one afternoon to look around and when we reached the first shop, Native Gallery, I was immediately drawn to rows of earrings and beautiful pottery.

Not even 10 seconds after entering the shop, I gravitated toward some rainbow bowls in the front of the store and was already contemplating buying one when the shopkeeper came over to my family and said “there’s no room for you here.”

Mind you, the aisles were a bit narrow but I have the depth perception to know my wheelchair would fit through and the common sense not to drive like a wild woman through a store full of valuable breakables. There was undeniably room for us. So, I began to explain that we were fine and would be very careful, but the shopkeeper again insisted there was “no room” for us and demanded we leave.

My dad, who was standing up and is obviously taller than me, could plainly see the shopkeeper was lying about the lack of space. In fact, aside from the one couple he was ringing up, there wasn’t a single other customer in the store. There was plenty of room. Based on the look of horror on the shopkeeper’s face when he saw two wheelchair users roll through the entrance, the urgency with which he jumped up to ask us to leave, and his persistent arguing that we couldn’t stay, it was clear he just didn’t want us to patronize his shop, or assumed we’d cause damage, and so he thought it best to kick us out rather than finding a way to accommodate us.

I sort of get it, maybe. Power wheelchairs in a store full of fragile pottery are risky and the shopkeeper wanted to protect his goods, but the reality is that anyone could accidentally break something. At the very least, he could’ve offered to bring some pieces to the front for us. But no matter how many times we pointed out that turning disabled people away from your public business is discriminatory and illegal, the shopkeeper ultimately forced us away.

I just wanted to buy a ring. I wanted a taste of what New Mexico has to offer. I wanted to enjoy the late afternoon sun and the colorful boutiques with my parents. I love exploring new places. Yet it seems every time I try to embrace my independence like any other human being, someone stops me in my tracks and reminds me that disabled people are still not fully welcome in this world we inhabit.

In most cases, it’s structural barriers that prove unwelcoming. Steps and narrow entryways are warning signs to stay away. Because of this, I’m generally inclined to give my business to places where the architecture isn’t keeping me out. Of course, there are plenty of instances where I take one look at a place and can tell there’s no way I will actually be able to navigate safely or easily. But I have learned to make my way around in environments not designed with accessibility in mind. I have learned how to weave through curves and make sharp turns, how to roll forward at just the right angle and slip through tight spaces. Within the realms of accessibility, where I go is my decision to make.

And so, even as the sting of this encounter flowed through me, I was still determined to find a ring. We went to a shop around the block called de Colores Galleria. There, the owner was lovely, accommodating my mom and I as we narrowed down our jewelry options, never making us feel as though we were unwelcome or in the way.

While she helped us, my mom shared with the woman behind the jewelry counter what had happened at the other shop. The woman was mortified, apologizing on behalf of Old Town. “I’m so sorry,” she said. “That’s not good for Old Town. And that’s not good for you.” We appreciated that, and thanked her profusely for her hospitality before we left.

My mom and I felt compelled to thank the second shopkeeper because her kindness was such a refreshing change from our first encounter. That said, we were essentially thanking this woman for treating us like people. It’s a painful reality of my existence that I find myself expressing gratitude when people communicate with me in such a way that shows they see me as deserving of equality and respect.

As I sat down to recount this shopping debacle in writing, my stomach tightened at the thought that issues such as this – the ones I so desperately wish to see eliminated – are the ones on which I’ve built a platform and a career. The frequency with which I experience and write about ableism has become a twisted form of job security, because deep down I know I will never run out of stories to share. And yet, what I would give for an end to the writing fodder, as it would mean a world finally without encountering discrimination.

I am tired of the days when simple moments of enjoying life are shattered by someone else’s lack of understanding and acceptance. I am a tireless activist, but I am still tired.

I kept the ring that I picked from the second shop on my finger as I wrote this. It now has a place as one of the most bittersweet pieces in my collection, but I treasure it. I will wear it with joy not only because it is a reminder to keep up the fight even when I feel defeated, but also because of the other memories it holds: eating raspberries straight from the bush in my family’s backyard, the hazy mountain view surrounding us, twirling around the dance floor with my dad at my cousin’s wedding, peering out of a tram with my family as it reached 10,378 feet, and – most beautiful of all – being with people I love, who love me, and who welcome and accept me as I am.

Disability is NOT Derogatory – Why You Should Spread the Word to End the Word

“Don’t you think she’s being retarded?” I heard the words coming out of the person’s mouth and realize she’s looking at me expectantly, waiting for me to chime in and nod in agreement. “Don’t you think…” What do I think? I wouldn’t dare utter the word “retarded” in response. I could answer with a simple yes and laugh it off like the word “retard” never came out of her mouth. I could say “Hey, that’s not nice.” Or, I could bring the casual conversation to a screeching halt and confront the issue head on, pointing out why “retard” is just flat out inappropriate.

Does this encounter sound familiar to you? It’s happened to me far too many times to count. Each one of the possible responses comes with a whole set of issues. Sometimes, no matter how passionate a disability rights advocate you are, none of the options are particularly ideal.

By laughing off a word that insults the entire disability community, you send the message that it’s okay to make disability derogatory. If you mention in passing that the r-word isn’t nice but move right on, the person will probably brush it off, maybe saying “oh you know I didn’t mean anything by it.” So of course, if you really want to Spread the Word to End the Word, you’ll have to directly call out the person who used it. And I understand how challenging it can be to confront discriminatory language. Too often, advocates who speak up are told that we’re overreacting. We’re told to relax because “it’s just a word.”

To that, I say: Never underestimate the power of a word. Even if the word “retard” is thrown around flippantly without conscious negative intentions, it arguably does just as much harm as when the word is directly hurled at someone as an insult. Each time a word like the r-word is used, this perpetuates that the entire concept of disability is derogatory, that disability is a negative quality. Although the r-word has long since been removed from the list of acceptable terminology to refer to cognitive disabilities, we need to remember that it was once a widely accepted disability-related term. The root of the problem with using “retard” as a derogatory word lies not so much in that it’s taken on degrading connotations, but in that it denounces disability as a part of the human experience worthy of respect.

I have a disability and I am worthy of respect. All people who have disabilities, be they cognitive, physical, or emotional, are worthy of respect. Our experiences are valid, and they are worthy of respect. That’s why I support the campaign to end the use of the r-word. It isn’t merely six silly letters, and it isn’t just a joke. Disability is an identity I’m proud of, and under no circumstances should disability ever be derogatory.

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.

The Complexities of “Curing” Disabilities

The Complexities of "Curing Disabilities" by Words I Wheel By

I can’t count how many times I’ve been asked variations of the question: “If there was a pill that could cure your disability, would you take it?” Though the short answer is a resounding “No!” I rarely get the chance to elaborate on the complex feelings and emotions that are behind my answer.

Here’s the long answer: I definitely have moments where the thought of an instant cure gives me pause. I wonder what life might be like as an able-bodied version of myself. I try to envision myself walking around the mall or running after a soccer ball. I try to picture myself climbing a tree or jumping rope. But thinking about these things is mind-bending for me because they’re not part of my life. And I’m okay with that. I don’t have a burning desire to walk or run or climb or jump like an able-bodied person, because such actions have never been part of my life to begin with. Since I was born with my disability, I don’t feel that anything was taken away from me. It’s simply not possible to miss something I never experienced.

I think “cure” is actually a rather loaded term in relation to my disability, because to cure something implies that you are returning the body to its normal state.  My disability is my normal state. To cure me in accordance with the medical definition of the word would not only give me new abilities, but also essentially transform me into a whole new person. I can’t imagine myself as an able-bodied person, because I never was an able-bodied person. I’ve embraced my disability as a huge facet of my identity, and I take pride in it.

While I don’t define myself solely by my disability, having a disability has undeniably shaped who I am. Without my lived experiences as a disabled person, I would be a completely different Emily. And as tough as certain aspects of my life have been, and though I know I will continue to face disability-related challenges throughout my life, I wouldn’t trade my life for a minute. My disability has given me a place in a community and a culture; it has been the reason why I’ve had amazing adventures and unforgettable experiences. To walk freely up and down stairs for one day would never measure up to the things I’ve done because I have a disability.

So, my answer is still no. No, I would not take a pill for a cure. That being said, it’s not my place to judge another person for answering “yes.” I understand that disability is a highly unique experience from one person to the next, and I can’t say that my opinions on “curing” disability are the only way to think about it. For instance, it is completely reasonable to search for cures for degenerative or painful diseases and disabilities. If I could take a pill to cure the pain I experience, I would do that in a heartbeat. But I don’t want to change who I am. We should be looking to cure the pain, not the person.

We should not be trying to cure disability or disease because society sees it as something to devalue. And for that matter, if the reasoning behind “curing” disability is about eradicating differences from society, then I think we should cure society’s ableism instead. We should make it a priority to eliminate access barriers and prejudiced mindsets, rather than focusing on eliminating disabilities. But to find ways to relieve symptoms and improve quality of life for people – those are the right reasons to support finding cures.

>