Words I Wheel By

July 22, 2014
by Emily Ladau

What Would You Do About A Disability Hoax Gone Wrong?

I’m sad to say I’ve encountered more than a few people who think that accessibility is nothing more than a perk or a privilege. While this is most definitely not that case, these so-called disability “privileges” present opportunities for some particularly immoral non-disabled people to take advantage of them. Perhaps the worst cases of this occur when someone goes so far as to pretend to be disabled.

This may seem outrageous, too horrible to be true, but it’s all too common. Consider, for instance, the scams at Disney World that made headline news last year. Wealthy families literally rented wheelchair users to act as pretend family members so they could skip long lines. And for those who prefer a do-it-yourself scamming method, I’ve read accounts of people who have rented or brought a wheelchair to a theme park and spent the day pretending to be disabled. While these are particularly extreme examples of people abusing disability privilege, I cannot stress enough how problematic it is if even one person does it.

As such, I was initially delighted to find out that the July 11th episode of the show Primetime: What Would You Do? (WWYD?) would be addressing the issue of faking a disability. WWYD? is a show in which actors are placed in controversial scenarios that occur in public while a hidden camera captures how people nearby respond. During the fake disability segment, titled “Handicap Hoax,” a non-disabled actress named Traci parks illegally in an accessible parking spot outside a Fairway grocery store. She then proceeds to use a motor scooter meant for patrons with physical disabilities. This fabricated situation definitely reflects reality in certain ways, but I noticed some major issues both with the way the segment is framed and with some of the interactions between Traci and the other shoppers.

Want to see more before I share my take? Check out the clip:

WWYD? was clearly trying to make an incredibly significant point, and yet once again, here is an example of media more successfully perpetuating harmful stereotypes instead of enacting real change. First, I can’t help but wonder why WWYD? used the term “handicapped” as the primary descriptor of disability. I’m aware this probably seems super nitpicky, but the word is outdated. Referring to disability as a handicap generally has a negative connotation. It’s the 21st century; just use the term “disabled.”

Even more important than my concern about language choice is the fact that WWYD? makes it seem that there’s only one right way to be disabled. Using a wheelchair but still having the ability to stand is by no means an accurate indicator of whether a person is faking it. Many people who use wheelchairs can stand for certain periods of time, and they do so in order to facilitate their independence.

My mom is a perfect example. She splits her time between walking and using a wheelchair for a number of reasons, including chronic fatigue and chronic pain. When she has to go somewhere that requires navigating long distances, such as the grocery store, she takes her power wheelchair. Sometimes, if my mom needs an item on a higher shelf, she’ll stand up for a moment to grab it rather than ask someone for assistance. Does this mean her disability disappears the moment she stands? Absolutely not. It means she’s doing what her body is physically capable of in order to help herself.

On WWYD?, the whole scheme is predicated on Traci standing up from the scooter to serve as evidence that she’s lying. This just isn’t a reasonable representation of what it means to have a disability, because there are no set rules for bodily functions. There’s no binary that claims you must sit if you’re disabled and stand if you’re not. In a strange way, it seems the producers do understand this, but they couldn’t seem to come up with another means for the actress to fake disability. As it happens, the shoppers that Traci interacts with figure out her ploy only because she asks for help while simultaneously standing up to help herself – obviously questionable behavior – or because she outright admits she doesn’t have a disability. Essentially, the whole concept of having a disability is portrayed in an awkward, inaccurate, and completely oversimplified manner.

My mom standing to put food in the oven, then sitting to take muffins out of a muffin tin.

My mom, baking her heart out. First, she stood up to put a fruit crisp in the oven. Later, after a long morning in the kitchen, she sat in her wheelchair to take blueberry muffins out of the muffin tin. Still the same person with the same disability, sitting or standing.

Another glaring problem within the segment is that it relies much too heavily on evoking pity to prove a point. When the show introduces a second actress, Alyse, who plays a visibly disabled character, they exploit society’s notion that you should feel bad for a person who has a disability. For instance, one shopper who tries to help Alyse is actually referred to by the host of the show as a “good Samaritan.” This idea of disabled people as pitiful and utterly helpless is stale, tired, and frankly quite insulting. I don’t need people to come help me because they think my life is awful or because they want to do their daily good deed; I just want people to be honest and considerate, as I should hope they would be to anyone else.

Due to the misrepresentation and the overarching theme of pity, I feel the WWYD? segment misses the mark. By the end, viewers may indeed learn to leave accessible spaces alone, but it seems more likely the message they’ll take away is not to use anything intended for someone with a disability only because we happen to be poor souls facing terrible circumstances. Thus, instead of defining right and wrong, the lesson is overshadowed by inciting a needlessly negative view of disability.

Ultimately, I respect WWYD? for always presenting tough situations and taking a critical look at how and why people respond to wrongful actions. The world surely needs more exposure to media that prompts people to examine their morals and beliefs. That being said, I hope producers of mainstream media will begin to examine their own beliefs and reconsider the ways in which they try to assist the disability community, so that their well-meaning efforts will contribute to positive change.

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June 30, 2014
by Emily Ladau

June Disability News and Blog Post Round-Up

Happy summertime, everyone! I tried so hard to narrow down the links for this month’s round-up, but I’ve decided that I need to include ALL the links I saved. If you have an afternoon or an evening to yourself, you should totally grab a drink and settle in for some awesome reading. Otherwise, I highly suggest pinning or bookmarking the round-up so you can come back to it whenever you have a few spare moments. It’ll be worth your time – I promise. And as always, let me know what interested you the most, and if you think I missed anything.

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

Disability News

Disability Blog Posts

Phew! That was officially the longest round-up I’ve ever put together. Hope you found some pieces that resonated with you!

Past Round-ups:
May 2014
April 2014
March 2014
February 2014
January 2014

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June 15, 2014
by Emily Ladau

Why My Dad Isn’t a Hero or a Saint: A Father’s Day Tribute

Photos of Emily Ladau and her father Marc

Whether they admit it out loud or not, people always wonder how my dad, Marc, “does it.” I can hear it in the tone of a person’s voice; I can see it in their facial expressions. How does my dad handle being the able-bodied husband and father to two disabled women? Everyone from family members to complete strangers have remarked how amazing he is and how lucky my mom and I are to have him in our lives. On more than one occasion, he’s even been called a hero or a saint.

My dad is neither of those things to me, though. And before you call me callous or ungrateful for saying that, hear me out.

I decided to come up with another way to describe my dad. I’ve recently taken to calling him Charlie-Marc, as in a reference to the title “You’re A Good Man, Charlie Brown.” It struck me to call him that one random day after he’d gone out of his way to drive me somewhere (since I don’t yet have a vehicle of my own). I feel strongly that there’s no better or more accurate description of my dad than “good man,” because it is something he can live up to every day. You see, to perceive my dad as heroic or saintly is actually rather unfair. Consider this: it may seem like a compliment, but by saying this, you actually manage to relegate my mother and I to a status of lesser beings than my dad while simultaneously asserting that my dad’s only bit of worth lies in being a caregiver. Neither of these are true.

Yes, he must go above and beyond the typical responsibilities of a father at times for reasons related to my physical limitations, but this is not all that defines his role as my dad. There are a million other reasons aside from his help and care that demonstrate time and again why he’s a regular old great guy. My dad is fiercely loyal and dedicated to our little family. He’s hilarious, and pretty much always up for a little silliness to brighten the mood. He’s always ready with words of wisdom and a surplus of hugs and affection when I need it most. But he also has tough days, plenty of aches and pains, and good old-fashioned cases of the grumps. He is real and he is human, and to me, that’s worth so much more than being a hero or a saint.

I never let a day go by without telling my dad that I love him, but especially today, I want him to know that I love him not just for all he’s done for me and my mother over the years, but for who he is – an awesome father and an all-around, bonafide good man.

I love you so much, Dad! Happy Father’s Day.

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May 29, 2014
by Emily Ladau

May Disability News and Blog Post Round-Up

I can’t believe how fast this year is blowing by. Each month is a whirlwind, and there are always so many great pieces on disability out there to be read. Somehow, I’ve managed to narrow down the pieces that resonated with me the most throughout May, and I’m excited to share them with you!

Also, I know there is a lot to take in here. If you can’t get to it all now, I highly recommend bookmarking or pinning this post for later so you don’t miss out.  And, as always, I’d love to hear what got you thinking this month.

Words I Wheel By's May Disability News and Blog Post Round Up

Disability News

  • ‘Everything Still Works Down There’: Uncovering the Sex Lives of Disabled People – Anyone who knows me, or has been following my blog even for bit, will know that I love anything and everything that involves real talk about disability and sexuality. So, when I read this article about Alexander Freeman and discovered that his documentary, “The Last Taboo,” is available to watch online for free, I was really excited! Trust me, it’s worth the hour it takes to watch it. I will give you fair warning though: the documentary pulls no punches with language, and it can be rather blunt and graphic (only with words, not images).
  • How Misunderstanding Disability Leads to Police Violence – This article, written by two activists I highly respect, is a must-read. Police do so many wonderful things for society, but all too often, they aren’t trained to work with or recognize anyone who has a disability. This leads to utter tragedy, and it NEEDS to stop.
  • Awkward Around People With Disabilities? These Ads Want to Help – An organization called Scope has created this series of advertisements as part of a campaign meant to help nondisabled people understand etiquette around people who have disabilities. I have some mixed feelings about the ads because sometimes dictating proper behavior actually makes certain situations more uncomfortable, but I think the intention behind the ads is important.
  • Dating last taboo in intellectual disabilities debate – Why disability and dating continues to be taboo, I’ll never understand. With proper sex education and education about the dynamics of relationships, this wouldn’t even be an issue.

Disability Blog Posts

  • The Myth of the Special Needs Supermom – Drop EVERYTHING and read this post. The writer, Mary Evelyn, is absolutely spot on about why this whole special needs supermom thing needs to stop. I especially love this because she’s a mother of a son who has spina bifida. (Bonus: you’ll get to see pictures of him and he is adorable.) I could go on and on about why I’ve always been against this idea of heroism that society holds, but this post tackles it perfectly.
  • Well Dressed In Self Defense – You don’t need me to be the millionth person to point out how controversial gun use is. Regardless of your feelings about it, this post provides an interesting perspective about using guns (safely) and disability. It’s a thought-provoking read.
  • The American Dream Also Has Wheels: Reforming Medicaid to Give People with Disabilities Equal Opportunity – Ever heard of the ABLE Act? You need to. This post is long, but it will explain why the disability community has a right to earn a living just like everyone else.
  • Doctors’ Ignorance Stands In The Way Of Care For The Disabled – Attention doctors, medical schools, and medical students: educate yourselves! Knowing how to work with patients who have any kind of disability whatsoever is not optional. It’s crucial.

Did I miss anything you think I should have shared in this round-up? Let me know! I’m always on the lookout for more disability-related reading.

Past Round-ups:
April 2014
March 2014
February 2014
January 2014

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May 11, 2014
by Emily Ladau

A Mother’s Day Reflection on Mother-Daughter Disability

Pictures of Ellen Ladau and Emily Ladau in honor of Mother's Day.

After spoiling my plans and letting my mom, Ellen, in on her surprise Mother’s Day post, I realized I had no idea how to live up to the promise of writing one. How could I find words that explain what it means to have been raised by someone whose being is connected with mine down to the very structure of our bones? But in her typical style, my mother came through with advice as I pondered this, giving me the insight I needed to get my thoughts in order. When she was in college, she told me, if she found herself struggling to begin writing on a tough topic, she would open her essay by addressing that struggle.

It is the concept of struggling that resonated with me in this case. I’m not one to sugarcoat things, and so there is no denying that as a disabled mother-daughter pair, our lives are challenging both individually and together. We are often the literal embodiment of the blind leading the blind, or rather, the mobility impaired leading the mobility impaired. Most of the time, this works out just fine for us, but double the disability leads to everything from a dramatic comedy to a regular old comedy of errors as we help each other.

And so I think back to a comment my mother once heard being made about us when I was a baby – a comment implying that these slightly unconventional lives we lead were not worth living. A woman who was behind my mom while she was holding me at an event said “Look what that woman did to her baby. She must feel so awful.” Though I wasn’t old enough to process this comment, the story sticks with me – not because this horrible woman was right, but because every day, my mother’s life is one that would put this woman in her place a thousand times over.

I know my mom has grappled mightily with guilt because our disability is genetic and she passed it on to me. I know my mom wishes our situations could be different. But to the woman who tried to hurt my mom so many years ago without knowing a thing about her, I want you to know that not a day in my life have I held my disability against my mother. It might not make life easy for either of us, but the fact that we share something as physically and emotionally personal as our disability has made me feel lucky in ways that transcend full explanation. She is my best friend, the kind who understands me when I’m at a loss for words because she, too, has been where I have been. She has been where I have been on levels that cannot even be seen by the unaided human eye, right down to the double helices of our DNA. I wouldn’t trade one bit of our experiences for the bond we have always had between us.

I treasure this bond because it is so deeply real. In fact, it’s occurred to me in recent months that I have moved beyond views of my mom as a hero or a role model, because those are concepts that just don’t cover how I feel. My mom is genuine, and honest, and flawed, and beautiful, and intelligent, and dedicated, and weak, and strong all at once. She is human, and she has shown me every day not how to defy circumstances, but how to make things work with every part of our reality. And to me, there is no better way to be a mother.

So, Happy Mother’s Day, Mom! For every part of who you are, know that I love you more than anybody can.

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