Words I Wheel By

August 25, 2014
by Emily Ladau
3 Comments

Writing Process of a Disability Advocate – The Writing Process Blog Hop

One of the best parts of blogging is connecting with amazing bloggers around the globe. I learn so much from them, and they’re part of my motivation to keep writing. So, when Sarah, a lovely blogger-friend of mine, tagged me in the Writing Process Blog Hop, I thought it’d be a fun little challenge. A blog hop is simply a task or series of questions that one blogger completes, and then invites other bloggers to complete it as well. And since I’ve been blogging for over a year, and writing for as long as I can remember, I’m excited to share a bit about my writing process.

The Writing Process of a Disability Advocate - Words I Wheel By

What am I working on?

Right now, I’m focused on two major things: starting graduate school and developing my career. (Read: I’m trying to accomplish a zillion things at once.) I’ll be pursuing my M.A. in Disability Studies at the City University of NY School of Professional Studies in Manhattan. On the one hand, I feel like I should have a degree in disability just for having been born with one and living with it every day, but I’m glad I’ll have the chance to dive deeper into disability law, policy, and history.

I’m sure juggling grad school while working on my career will be quite the adventure, but lots of people do it, right? My blog posts might just have to be excerpts from whatever paper I’m working on. Just kidding…sort of. Seriously though, I have no plans to stop writing because I love what I do. I’d like continue freelancing as a big part of my career, so I’m working on that, but I’m also going to be branching out into the world of professional public speaking. I already have experience with this, so I’ll be expanding on it. Eventually, my dream is to work for a disability related non-profit organization, and one day, I plan to be behind a non-profit of my own.

How does my work differ from others of its genre?

Though so many people write about aspects of disability, I don’t know too many people who have quite the same experience with disability as I do. My writing is shaped by two main factors, the first being that my disability is an extremely rare physical genetic disorder. The second is that both my mother and my uncle have the same disability. I think this influences my work in that I perceive disability as a defining part of my identity. Disability is, and always has been, in my blood. So, when I write, I have a life truly full of disability to drawn upon as I put words on the page.

Why do I write what I do?

Quite simply, I write about disability because it is so much a part of who I am. The culture and identity, the stigma and discrimination, the positives and negatives – I want to be open and honest about it all. I want to be part of larger conversations about what it’s like to be part of the world’s largest minority, and I want to share my own experiences. I want to speak for myself and to provide just a bit of insight to other people. And the one thing I can’t stress enough is that if you’ve met one disabled person, then you’ve met one disabled person. I don’t write to put words in anyone’s mouth; I write to be involved in advocacy and social justice and education, to contribute my voice to the much bigger world around me.

How does my writing process work?

All of my work stems from how I experience and interact with disability. Sometimes, an idea will come about from an impassioned conversation, and other times I’ll start by quietly reminiscing or reflecting on past experiences. While some ideas just pop into my head, a lot of what I write is inspired by current disability issues in the news or other media.

Once an idea forms, there are three possible ways I’ll go about writing. 1) I write notes or a draft by hand (which I did for this post). 2) I bang it out on my phone in the car or late at night before bed (which I did for this post on being part of the Americans with Disabilities Act Generation). 3) I type it a bit at a time in a Word document (which I did for this post on speaking up against ableism).

If something really gets me going, I can finish a piece in under an hour. Other times, it can take up to a week. When I’m done, I’ll sometimes publish right away, but usually I like to let a post sit for a day or two and then reread it from a fresh perspective to revise. Or, if it’s a piece on a particularly intense topic, I’ll edit and then read it to my editors-in-chief – my parents. I have always valued their perspectives immensely, because my mom has lived her whole life with a disability, and my dad has been around disability for 26 years. They’re both always ready to offer honest thoughts, arguments, or critiques, and I’m immensely grateful to them for that.

Ultimately, my writing process isn’t set in stone. The only sure thing behind everything I’ve written is my passion to connect with people and hopefully, in my own small way, bring about positive change for the disability community.

Now, I’d like to tag a few awesome disabled bloggers to get in on sharing their writing process as well, if they’d like: Cara Liebowitz of That Crazy Crippled Chick, Andrew Pulrang of Disability Thinking, and Alicia Searcy of Spashionista. And even if I didn’t tag you, if you’re feeling like sharing more about your writing process on your own blog, I’d love to read it!

Olivander / Foter / Creative Commons Attribution-NonCommercial-ShareAlike 2.0 Generic (CC BY-NC-SA 2.0)

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August 19, 2014
by Emily Ladau
14 Comments

Believe It Or Not – Media Constantly Perpetuates Freakish Disability Stereotypes

Let’s be real for a minute – we’ve all seen something we deem to be out of the ordinary and held our gaze on the sight just a bit too long. It’s human nature. And when it comes to people who have visible disabilities, we’re quite used to being on the receiving end of stares or double takes. While it can be frustrating, I try my hardest to consider a person’s stare as a moment of genuine curiosity rather than a display of rudeness. After all, despite being a passionate advocate for accepting everyone exactly as they are, even I have been the one guilty of staring on occasion. That being said, there’s a difference between expressing curiosity about disability and downright ogling that still seems to be lost on some people.

So, the announcement that the fourth season of Ryan Murphy’s American Horror Story will have a Freak Show theme reminded me that in certain, society has yet to move beyond perceiving disability as something unusual to be put on display. I know the season hasn’t started yet, so I can’t form a specific opinion, but I do feel some trepidation regarding the freak show concept. I sincerely hope Ryan Murphy is thoughtful about his portrayals of disability, because if he’s not, it’s quite possible to make disabilities seem even more freakish and frightening to the general public than they already are. Conversely, if done well, the freak show theme has real potential to open up important conversations and challenge conventional ways of thinking about disability.

My concerns are perhaps heightened due to my recent visit to the Ripley’s Believe It or Not “Odditorium” in Times Square in New York City. It’s a total tourist trap, but for the most part, it made for a entertaining afternoon with my friend Julia. However, the disability activist within me struggled with the ableist and discriminatory mindset that was so deeply intertwined with some of the museum’s exhibits.

Essentially, the Odditorium relies on the stigma against disability that has historically influenced society’s perceptions in order to create shock value and evoke strong reactions from patrons. Granted, Ripley’s Believe It or Not was at one time an actual show that originated in the early 1900s, a time when exploitation of physical difference for the sake of amusement and monetary gain was considered socially acceptable. Freak shows were a common form of entertainment back then that involved “normal” people gawking at people with obvious physical differences. So, even though the Odditorium is reflecting history, it’s clear that the exhibits make no effort to negate this antiquated freak show theme.

Wax figure of Johnny Eck, a man born with no torso. On the right, a picture of my friend inside an optical illusion making it appear she has no torso.

Instead, the Odditorium has an eerie feel of giving its visitors complete permission to slip back into the mindset of outdated disability stereotypes in ways that would be considered unacceptable in other contexts. Barely five minutes into the visit, Julia and I encountered the first of many examples of disability on display: a wax figure of a man named Johnny Eck, who actually was a freak show performer for part of his career. The figure prominently shows that his body ends mid-torso. I was rather uncomfortable with the idea that this figure was display worthy because of his disability, but all of the people around me were absolutely fascinated – laughing, pointing, and mocking. Next to Eck’s figure was an interactive optical illusion that allowed people to appear as though the bottom half of their body had gone missing. I admit that Julia and I were amused by how well the illusion works. But, we enjoyed it purely for the sake of the illusion.

The whole point of the museum is giving people a chance to gawk, and heck, I even paid for a ticket to do so. Yet, combining displays about “abnormal” human beings with displays ranging from medieval torture devices to baseball artifacts just doesn’t make sense to me. Even so, as we continued to venture through the museum, we saw several more instances of human “freak” exhibits, including pictures, statues, and videos. I was particularly struck by a series of black and white photographs that showed people who were actually part of the Ripley freak show. Nowhere did the exhibit specify that people should not make fun of or judge people with visible physical disabilities as was done in the early 20th century. In fact, the pictures had captions with rather tasteless jokes posted underneath them. To me, the attempts at humor just fell flat, instead driving home the ableism. I fear that to many other visitors, it likely reinforces a message that it is okay to mock disability and to objectify humans simply because they look different. Not enough distinction was made to indicate that the exhibit is intended to reflect history, and not 2014.

RipleysPhotos

Like it or not, we cannot deny that the degradation of the disability community through freak shows happened. And unfortunately, messages and images like this that perpetuate the idea of disability as freakish can still be pretty easily found in the media. I worry about the possibility that the same sort of freak show negativity could overtake the entire fourth season of American Horror Story. If this happens, it could be a huge step backwards for portrayals of disability in the media, especially because the show is so popular.

In the case of Ripley’s Odditorium, I don’t have much hope that they would consider recontextualizing their exhibits because the fact remains that it houses history. But, I have very high hopes that American Horror Story won’t perpetuate stereotypes, and will instead do justice to the incorporation of disability within the story line. Ultimately, it’s crucial for the consumers of such forms of media to understand that the freaks at which they gawk are representative of visibly disabled people who exist in the real world. We’re humans, not just plot devices to be objectified for your entertainment.

 

Image descriptions:
1) (From left to right:) Wax figure of Johnny Eck, a man born with no torso, next to a picture of my friend inside an optical illusion making it appear she has no torso.
2) (From left to right:) A photograph of a man with hands and feet that are thought to look like crab claws. Caption reads “Crabby By Nature – A rare genetic disease afflicted the ‘Crab-Toed-Man’ of up-state New York c. 1900.” Next, a photograph of a man with a lot of hair covering his face. Caption reads “Groomed for Success – Jo-Jo the dog faced boy had ‘werewolf syndrome’ – a genetic disorder that made him a world famous 19th century sideshow performer.” Next, a photograph of a man with three legs. Caption r
eads “Just for Kicks – Francesco Lentini, the toe-tapping, three-legged musician and soccer player literally had a ‘leg-up’ on the competition.”

 

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August 12, 2014
by Emily Ladau
45 Comments

5 Lessons I Learned From My 1st Year of Blogging

Let's Celebrate the 1 Year Blogiversary of Words I Wheel By on a purple sparkly background with rainbow balloons next to the text.

Last year, on August 12th, I hit publish on my first blog post, wondering if it would make it any further than my grandmother’s inbox. (Hi, Grandma!) I had decided to take on the idea of an elevator to success, since I can’t climb stairs. As I return to these words I wrote so long ago, my view hasn’t changed, but I find myself cringing a bit. My points read like an undergrad paper and there are no personal stories to be found. It’s as though I thought I’d be emailing the link to a professor for a grade.

So much has changed since then. I think (and I hope) that my writing style has evolved; I have grown into my voice; I have learned to stay strong when my beliefs are challenged at their core. The past 365 days have been an incredible crash course in discovering my place in the real world.

Most importantly, Words I Wheel By makes me proud. This blog is my baby, and it’s launched me headfirst into some wonderful experiences. And it seems that time flies when you’re having fun, because today is my One Year Blogiversary and I am SUPER EXCITED! Like, I’m-having-a-dance-party-and-would-throw-confetti-except-then-I’d-have-to-clean-it-up excited.

But if you know me, then by now you’ve probably figured out that while I’m putting up streamers and balloons and eating ice cream cake, I’m also reflecting on how I can apply what I’ve learned from the past year of writing experience as I move forward. I’ve narrowed it down to five bits of wisdom that I’m trying really hard to remember each day:

5 Lessons I Learned from my 1st year of blogging - Words I Wheel By

1) Be bold and brave.

  • To be honest, conflict kind of terrifies me sometimes. I worry about stirring up trouble, and at times I’ve found that my careful focus on being diplomatic undercuts the messages I want to put out there. But when it comes to writing about disability rights, or any topic you’re passionate about, you can’t succumb to your fears. Not only has Words I Wheel By been a great platform for me to work on advocacy, but also I’ve found that it functions as a major kick in the butt for me to be brave and speak up directly to people – like the time I experienced discrimination while I was at a disability-related event and confronted it instead of letting it go. I know it’s cliché, but it really does help to do one thing that scares you every day…or at least once in a while.

2) You can’t please everyone.

  • Conflict may be scary, but I’ve still ended up in the middle of some serious doozies when it comes to controversy. When I wrote about my feelings against curing disabilities, I received an email disagreeing with me using language so colorful it could have made a rainbow. And speaking of rainbows, if I say they’re beautiful, someone will probably find a reason to disagree with me. There are just some people who won’t be happy with you no matter what you say, and I’ve come to realize that’s okay. I’m pretty sure it’s what makes the world go ’round.

3) Stand (or sit) by your views.

  • I’ll admit that when I encounter a person who disagrees with me, it can shake me up. The very first time someone expressed a dissenting opinion, I freaked out about how I’d defend my views to a person who just didn’t seem to get it. However, as I’ve continued writing, I’ve become more comfortable in explaining my reasoning and remaining firm in my beliefs, even when I’m met with anger or resistance. I had to learn this early on in my blogging experience when I wrote a post responding to a Guinness commercial depicting a game of wheelchair basketball that had a twist ending. I found the ad patronizing to the disability community, but apparently, tons of people thought my views were wrong, despite that fact that I actually am a wheelchair user. A particularly friendly person named Helen accused me of “looking for reasons to be angry and unhappy.” How sweet! So, this became a test for me as my viewpoint was challenged time and again, and I had to learn to stick by everything I said. Recently, I was put to a similar test because of a response I received about a piece I wrote on The Huffington Post…from the article subject’s mother! It was a fiery reply and tough to read, but I didn’t let it intimidate me, and I’m quite proud of that. So, whenever someone confronts me with a different perspective, no matter how heated it may be, I stay calm, polite, and unwavering in what I sit/stand for.

4) Don’t take criticism personally.

  • This has been, without a doubt, the hardest part of blogging. A while ago, I wrote a post on why the fact that Michael J. Fox and I have disabilities does not make either of us inspirational. It was met with nearly all positive responses, except for a few rude commenters who I now consider to be “blog trolls.” One such comment I received from a lovely fellow named Craig asserted: “Well see, the difference is, Michael J. Fox IS inspiring, and you’re not. Simple truth.” Charming, isn’t he? But when I thought about it, I realized this faceless, mean person on the Internet offended me AND missed the point of my post entirely, so I got over it pretty quickly. That being said, people who criticize your personal character without taking the time to truly understand you are everywhere. I just experienced this in the form of a blog post calling me and fellow advocates from my generation lazy and “careless.” And let me tell you, I was having NONE of that, so I wrote a response. In that particular case, I did take the criticism personally at first, but when I realized just how off-base it really was, I decided to use the situation into something positive and advocate for myself. I’ve seen some amazing bloggers and mentors who do the same, and have learned from them to let criticism roll off my shoulders.

5) Examine your own beliefs.

  • This contradicts everything else I’ve said in a way, but it’s perhaps the most important lesson I’ve learned this year. It’s important to sit/stand for what you believe in, but I am human, you are human, and none of us are always right. My way is not the only way, and my view is not the only view. While I advocate for what I support, it would be downright unreasonable for me never to consider new ways of looking at things. And this is really tough for me sometimes, because who wants to admit to being wrong, or even just to the fact that there may be two sides to something? But checking myself is something I am trying with all my might to do each day, because to shut myself off from other perspectives is to deny myself the chance to develop a greater understanding of the world around me.

Anyway, to say thank you to those of you who stick around, who keep coming back, who take the time to consider what I have to say…it would never be enough. I’m honestly amazed every time I encounter someone who has read something I’ve written, because (and I know how cheesy this is) blogging is one of the ways I’m fulfilling my dreams of being an advocate. So please know, from the bottom of my heart, how much it means to me that you’re here, and I hope you’ll still around for year number two!

I’d love if you’d all join me in celebrating my blogiversary by sharing stories if you can relate to any of the experiences I’ve had. And if you’ve never said hi before, I hope you’ll comment and let me know your thoughts!

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August 7, 2014
by Emily Ladau
19 Comments

Playing Disabled is Never Cool

In a recent New York Times Op-Ed, “When Wheelchairs Are Cool,” writer Ben Mattlin responds to the Justin Bieber wheelchair use controversy, addressing an idea known to much of the disability community as “wheelchair perks.” I mostly found myself laughing and nodding along, because I’ve previously been privy to a few wheelchair perks here and there. Since having a disability comes with an often frustrating set of challenges, I’ll admit that it hasn’t always been a bad deal to have the “disability card” in my back pocket – for trivial things, that is.

When I used to go to Mets games at Citifield, I’d always get stuck waiting for Shake Shack on a line so long that I missed at least a full inning. That all changed when an employee pointed out that I was entitled to cut to the front of the line because I use a wheelchair. I found this both hilarious and ironic, because I had my own place to sit while everyone else had to stand, so waiting on a line wasn’t the least bit of effort for me. Yet it was precisely because I was sitting that I got to order my milkshake faster.

Obviously, a little comic relief wasn’t a terrible thing, and the worst thing that happened as a result of going to the front of the line is that I got a few questioning, probably cranky looks from other people who were initially ahead of me. At the time, my logic for accepting the opportunity to cut the line was that this newfound milkshake advantage balanced out society’s general treatment of disability as a disadvantage. I figured while some may consider it unfair that I didn’t have to wait as long simply because I’m physically disabled, it’s far more unfair that not even a lifetime of waiting will make the world completely accessible to me. So, I decided I could just take the chance that was offered and call my speedy dessert an even trade, although it’s not.

As I look back on this, I realize that accepting a wheelchair perk completely negated my efforts to advocate for equal treatment of disabled people. Shame on me, I know. However, it’s quite the leap to say that because of these little (and actually rather rare) perks, it’s okay for someone who isn’t disabled to “play disabled.” Therefore, Mattlin’s assertion at the end of his article that such a thing is acceptable is where he lost me completely.

“Playing disabled,” which Mattlin apparently doesn’t mind if people do, is quite different than “playing the disabled card.” It seems safe to assume that Justin Bieber was in the mood for a taste of the speedy dessert of disability, and decided to fake a knee injury in order to use a wheelchair and skip lines in Disney. And contrary to what Mattlin says, this little game of disability that Bieber decided to play should not be lauded as cool. In fact, if Bieber really was faking his need for a wheelchair just for the free pass to avoid lines, then this actually means Mattlin contradicts himself. He says that you shouldn’t play disabled “for the freebies,” but you should do it because it’s cool. I genuinely don’t think Bieber sat in a wheelchair because he thought it would drive up his already meteoric level of fame while simultaneously showing people how cool it is to be disabled.

I suppose a major celebrity in a wheelchair could somehow elevate the status of wheelchair use because mainstream media has so much power to alter the public mindset, (though in the Bieber case, that’s rather doubtful), but in no way is that the same as encouraging society to develop a deeper understanding and acceptance of the complexities of disability.

Instead, it makes a wheelchair appear to be a toy or a costume piece, and it’s neither of those things. That doesn’t mean it’s not cool; it happens to be one heck of an amazing machine. But my wheelchair is essential to my life because it’s the only way I can get around. My wheelchair is intertwined with my being and I cannot remove myself from needing it whenever I please. Using it is not a game to me, or to any wheelchair user.

Black text reads "disability is not a game." It is superimposed over multicolored game pieces and a game die.

Of course, Mattlin does set forth the caveat that it’s only acceptable to play disabled “as long as it’s done with joy and respect — not to tease or poke fun.” While I don’t think Bieber was poking fun or harboring malicious intent, that doesn’t mean he was demonstrating respect to the disability community. I wonder if it’s even really possible to pretend to be disabled with joy and respect?

This veers into rather complex territory because pretending to be disabled is something frequently done in simulation exercises. Disability simulations often involve activities wherein a nondisabled person tries propelling a wheelchair for a few minutes or a few hours in an attempt to gain insight into the everyday life of a person who is actually disabled. Though simulations are meant to encourage a mindset of respect, they rarely, if ever, provide participants with an accurate reflection of the disabled reality. As it happens, in many cases, even the most well-intentioned simulations can result in reinforcing – not eliminating – participants’ unfavorable views of disability, causing them to perceive disability as a terrible, pitiful struggle that they’d never want to face.

Conversely, if people participating in a simulation exercise are full of joy and merriment, one of Mattlin’s requisites, then it’s unlikely they’re fully conscious of showing respect, and instead probably view the activity as merely a challenge or an amusement. This is equally as problematic as the notion that disability is a dismal state of being. There’s just no way a nondisabled person could ever experience the full range of emotions held by someone who is disabled. We can learn, relate, and come to an understanding of the people around us, but no one will ever fully know anyone’s reality but his or her own.

So, call it simulation, call it pretending, call it faking, or call it playing disability. Whatever it is, and no matter if it’s done with ill will, kindness, or anything in between, it’s not “cool” to play around in a wheelchair, the space that is so much a part of my identity and my reality. Instead, why don’t we enlist celebrities, or better yet, society as a whole, to make it cool to accept me, the person actually sitting in the wheelchair, for who I am?

Photo credit: mikelietz / Foter / Creative Commons Attribution-NonCommercial-ShareAlike 2.0 Generic (CC BY-NC-SA 2.0)

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July 31, 2014
by Emily Ladau
2 Comments

July Disability News and Blog Post Round-Up

I have no clue how the end of July is here already, but I’m pretty excited because Words I Wheel By is turning one year old on August 12th! While I gear up for the excitement of my very first blogiversary, here are some of the best reads on disability that I discovered over the past month. As usual, the list might be just a teeny bit long, because I have trouble narrowing things down. I highly suggest pinning or bookmarking the round-up so you can come back to it whenever you have a few spare moments. Let me know what interested you the most, and if you think I missed anything!

Words I Wheel By's July Disability News and Blog Post Round-up



Disability News

Disability Blog Posts

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This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. The Accessible Icon (as seen in my header image) is owned by Triangle, Inc. and was created by Sara Hendren & Brian Glenney. The Accessible Icon is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License. Visit The Accessible Icon Project to learn more.