Words I Wheel By

July 29, 2014
by Emily Ladau

Generation ADA is Here to Stay in the Fight for Disability Rights

Black text reads "Generation ADA is here to stay in the fight for Disability Rights" on a red background with a flame in the center.

In honor of the 24th anniversary of the Americans with Disabilities Act (ADA), my friend and fellow activist, Maddy Ruvolo, and I released a podcast called Disabled Girls Talk. We focused on what it’s been like to grow up and function in society as part of the ADA generation, celebrating our civil rights. Our wonderful friend Karin published a blog post of a similar nature, also expressing gratitude for the ADA.

To highlight the positive impact of the ADA, Maddy and I got people talking across social media about what this disability-specific legislation has brought into our lives. You can check out the #BecauseOfTheADA hashtag we started on Twitter to see an incredibly insightful exchange of ideas. It’s been amazing to see so many people acknowledging the progress we have made in ensuring the rights of the disability community in the United States.

And yet, there is so much more work to be done. So much more. On paper, the ADA promises access and calls for equality, but a massive group within Generation ADA, along with every other generation of disabled people on this planet, must fight and advocate our way through every single day against barriers, against prejudice, against outright discrimination. We are never unaware that change is hard won and progress must be made.

However, in our podcast, Maddy and I did indeed address the idea that we take some things the ADA has provided for granted. By this, I meant that when I go up a ramp into a public place, I should not HAVE to stop to express gratitude for having basic access. Neither Maddy nor I meant, in any sense, that we take the ADA as a whole, or the work of advocates before us, for granted.

So, when I read a response (which you can read here) to our podcast and our friend’s blog post accusing Generation ADA of being careless, and of doing nothing more than paying a bit of “lip service” when we encounter discrimination or access barriers, I was honestly extremely taken aback.

First, how is it fair to take issue with the fact that my disabled peers and I enjoy the rights provided for us by the ADA? Isn’t that why advocates fought for such legislation in the first place? The generation who worked to turn the ADA into law deserves to feel pride in their immense accomplishment and asking Generation ADA to appreciate that is more than warranted. That being said, why is it a problem that some forms of access have become so integrated into our lives that we can sometimes use them without thinking about it? This means the ADA is working!

In some ways, that is. There are countless places in the United States that are still completely closed off to me because I use a wheelchair. There are countless people who believe I do not deserve the rights I already have, nor the rights that advocates of all generations have yet to secure. There are countless people who still perceive me as nothing more than an object of pity and view my life as one not worth living.

Did you catch that reference to “Lives Worth Living,” the documentary about the pioneers of the disability rights movement? That’s just one of myriad resources I’m lucky to have so I’ll never forget the activists who paved the way, the activists who made it so that even though I still face access issues and prejudice, I don’t face it nearly as much as they did only decades ago.

The fighters who have come before me are at the heart and soul of why I continue to fight for my rights, and I think it’s safe to say this goes for plenty of my peers. To assert that Generation ADA has given up this fight because we take something like a ramp for granted is a major misjudgment. There are unfortunately people in every generation who are apathetic about disability rights, because that’s just human nature for some, but they are outweighed by so, so many of us who work tirelessly as activists ranging from a local level to a national level, and from a national level to a global level. Rather than calling us out for what we’re supposedly not doing – potentially creating fissures within a community that so desperately needs to focus on a unified front to achieve progress – how about continuing to mentor, advise, and support us (as several older advocates already do) as we find our way forward in this country that’s still so weighed down by stigma?

You may hear me talk about how great it is to have automatic door openers, but how insulting to assume that because I can push a (usually faulty) button to open a door, it means I’ve resigned myself to the idea that there’s no reason to keep the flames of the advocacy movement going strong. These flames are my passion. They are the reason I write. They are the reason I use social media to spread the word about disability issues and rights. (And why yes, I do tweet about the Convention on the Rights of Persons with Disabilities – #CRPD. In fact, I did an internship last summer with the Association of University Centers on Disabilities under the auspices of the American Association of People with Disabilities [AAPD] during which I went to meetings on Capitol Hill, and I literally did the research and wrote the talking points for people to use when calling senators about the CRPD.) They are the reason I speak up when I am subjected to injustices because of who I am as a disabled woman. They are the reason I am going to graduate school for my M.A. in Disability Studies. They are the reason I want to keep pushing towards the changes we still so clearly need.

Therefore, lazy and careless are some of the last words I would use to describe myself or Maddy. A quick Google search of “Maddy Ruvolo” or “Emily Ladau” would show that our advocacy efforts are anything but lacking. We’re both immensely involved and dedicated to disability rights activism.

Maddy’s leadership essentially began the conversation about disability at her college, Scripps. She founded the Disability, Illness, and Difference Alliance to create social and cultural change throughout her campus. Before her senior year of college, Maddy also did an internship through AAPD in Congressman Alan Grayson’s office. Following graduation, she took on a job at an independent living center in California, where she’s working as a Systems Change Advocate. So, I say this not just because I’m her friend: Maddy is an incredible advocate and leader.

I’m no stranger to the advocacy world either. I started at age 10 on Sesame Street, educating kids about my life with a disability, and as I grew, I discovered disability rights was my passion. I publish regularly on disability issues both on this blog and in publications that are read globally. I am on the board of a New York State advocacy organization called Youth Power! and was just nominated to be the chair of the Outreach Committee. Advocacy and activism are huge parts of my life.

Because of all this, creating the Disabled Girls Talk podcast with Maddy seemed like a great way to capitalize on technology and expand the horizons of the work we’ve already been doing. Discussing the impact of the ADA on our lives is something we are both proud to have done, and we will continue to tackle more disability rights issues in all of our future endeavors.

I see the bigger picture here, and I have every last bit of faith that my fellow Generation ADA advocates do as well. We need the Ed Roberts’, the Justin Darts’, the Judy Heumanns’ of our generation to come forward and continue the fight. And you know what? I firmly believe they’re emerging more each day. We’re out there, working on the next wave of the American disability rights movement, forging ahead, and always grateful for the guidance of the activists who laid the groundwork for the lives we all live today.

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July 26, 2014
by Emily Ladau

Celebrating the Americans with Disabilities Act by Curbing the Heroes

I have never known life without the Americans with Disabilities Act (ADA), which became law on July 26, 1990. My birthday is just one year and three days after this, so I am an official member of the ADA Generation. In countless ways, the ADA has been a blessing. Places that my mom and my uncle (who are also disabled) could not have gone while growing up and things that were not accessible to them are open to me. Public attitudes towards disability have shifted significantly from prejudice to acceptance. Opportunities for the disability community continue to expand every day. It’s a beautiful thing to be alive with the ADA as a fixture of United States law, and I couldn’t be happier to ring in the 24th anniversary with optimism for the future.

The optimism I hold is crucial for advocates as we move towards the quarter-century mark of the ADA, because we must be hopeful that changes will continue to come. Far too many people believe that the work for disability equality is done, but we’re still just getting started. The ADA has been a source of immense change, but there is so much more to do. I am reminded of this every time I cannot get into a public place, even though it was supposed to become ADA compliant years ago. I am reminded of this every time I am subjected to stigmatization and exclusion. And I reminded of this every time I hear stories of discrimination and access barriers across the country, and know that I am not alone in the struggle.

So, in honor of the 24th anniversary of the ADA, I’d like to share a poem I wrote last year for my Disability and Social Justice class, entitled “Curbing the Heroes.” I hope it captures the complexities of having a disability in America – a lamentation of the access still needed, a celebration of independence, and a rallying call for advocates to never give up our fight.

blue and purple divider line

Curbing the Heroes by Emily Ladau

I feel your eyes on me.
Intense gawking.
Inquisitive gaze.
Maybe an indifferent glance.

Roll on.
Let it roll off your shoulders.
That’s what I’m told.
And so I roll.

Bump. Screech. Crash.
I tried to roll forward.
I hit the curb.
The step is too high
to make it up
and over the barrier
of your discrimination.

The kind stranger armed with working limbs
swoops in to do his good deed.
Lifts me up, shoots down my pride.
I don’t want some everyday hero
coming to my rescue.
I want to be my own hero.

And so I fight. Fight to get over that curb.
Fight to get over discrimination not in leaps and bounds,
but in turns of the wheel –
Each unencumbered turn a small victory
On the inaccessible battlefields
that we will flatten and widen
and make ADA compliant
‘til we don’t need you and your two “working” legs
to save the day.

Here's to 24 years of civil rights for Americans with Disabilities! Happy Anniversary, ADA!

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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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