Category: Disability Rights Advocacy

The Americans with Disabilities Act just turned 28 and I have some thoughts about it.

Faded photo of American flag in the background. Text says: 28 years of the Americans with Disabilities Act: where are we now? Below text is a timeline. At the beginning of the timeline it says 7/26/90. At the end it says 7/26/18.
Posted on by Emily Ladau

Every year, when the anniversary of the passage of the Americans with Disabilities Act (ADA) rolls around, I find myself wondering how much further the Disability Rights movement has come in the years since the elder President Bush signed it into law.

These days, activists seem to be playing a game of whack-a-mole, trying to smack down each move the current administration makes to pull civil and human rights from the grasp of the disability community.

But as satisfying as it may be to direct so much righteous anger toward the people in power, I’ve had to admit to myself that the Trump regime is far from the main responsible party for the access barriers and discrimination disabled people encounter daily. Sure, it’s arguably worse overall as of late, and the government could and should be making efforts to fix issues instead of contributing to them. The reality, though, is that the disability community has been fighting the good fight for years, and no political party, corporation, or public system has fully risen to the occasion.

Yes, we’ve made so much progress. I’d be remiss if I didn’t acknowledge that. And I’ve heard my generation called out time and again for taking that progress for granted, for not knowing how good we have it. I know I’ve got it pretty good. I’m full of endless admiration and gratitude toward the activists who got us to where we are today. But in so many ways, this world is exactly the same as it was 28 years ago when President Bush called for “the shameful walls of exclusion [to] finally come tumbling down.” Those walls are still up in full force, and try though we do, we cannot simply legislate them away.

Because that’s what the ADA was intended to do. It was intended to put an end to the stigma and the obstacles and the exclusion. It was a law meant to be on our side.

But where were the mighty protections of the ADA when a broken elevator trapped me underground on a subway platform in Union Square and there were no nearby wheelchair accessible stops? It wasn’t the ADA that lifted me and my wheelchair up the stairs; it was six NYC firefighters.

And where were the protections of the ADA when, for at least the 15th time, a hotel gave away the wheelchair accessible room I reserved? It wasn’t the ADA that fixed the problem; it was my advocacy and fury. The same advocacy and fury that, when unleashed en masse, led to the passage of the ADA 28 years ago. I thought the point of the ADA was to relieve this unending need to fight.

Where were the protections of the ADA when I couldn’t find an accessible parking spot for the zillionth time while out and about running errands?

And where have the protections of the ADA been every time I’ve had stares and comments and insults about my disability rip through me? Where has the spirit of the ADA been within society? The spirit of inclusion, equality, humanity? Truth be told, I don’t think it’s sunk in yet, nearly three decades later.

So here we are, in a world that is technically post-ADA, but feels so very stagnant – and in many ways, so very regressive. For this, we can decisively point fingers at current legislators on both sides of the aisle who lent support to the grossly misnamed “ADA Education and Reform Act of 2017.” There’s no doubt people (namely business-owners and lawmakers) are working as tirelessly right now to dismantle disability rights as activists are to maintain and expand them. But the odds are doubly stacked against the disability community as we’re fighting to hang on to rights that haven’t been fully acknowledged in the first place.

You’re probably thinking I’ve just written the pessimistic activist’s manifesto. I get it. No one wants to hear a bitter disabled person’s laments – especially not on the one day of the year I should literally be celebrating 28 years of civil rights. But here’s the thing: activism is cyclical and often leaves us feeling defeated, and it’s 100% okay to recognize that truth. In fact, I’d say it’s actually healthy to be honest about what we’re up against. You know why? Because it stokes the fires of passion and fury that keep us going when the going gets tough. And the going will continue to be tough in the years to come, to be sure. But I can say with a full heart and sincere optimism that the disability community I’ve come to know and love is empowered and ready to continue walking and rolling through the flames.

The Mighty Question: Who Should Speak for the Disability Community?

Posted on by Emily Ladau

If you’re a somewhat active Facebook user, I’d venture a guess that you’ve seen at least one article from a website called The Mighty in your newsfeed. With frequent click-bait headlines (recent example: “When Gym-Goers Said Inviting a Dwarf to a Party Would Be ‘Hilarious’”) and a steady stream of posts intended to play to emotional sides, The Mighty has become one of the most popular websites focused solely on disability and disease to make an impression on mainstream social media users. Unfortunately, there’s controversy flaring up around The Mighty right now that I just can’t ignore.

The Controversy

You can read about what sparked the firestorm in more detail if you’d like, but here’s the crux of the issue: The perspectives of contributors to the site are often at odds, largely due to an “us vs. them” mentality held by non-disabled parents of disabled children and the disability community. Many non-disabled parents use the Internet as a public forum to express their thoughts on disabilities and their experiences in relation to raising their children. Many disabled people (myself included) would like non-disabled parents to use more discretion regarding what they share. We would like the voices and viewpoints of non-disabled parents to not overshadow those of people who live every day in a disabled body. This is not applicable to all parent writers, as many truly take the time to listen to what the disability community has to say, actively connecting with and being part of the community. Other parents, however, feel that disabled activists are really just trying to censor or silence them.

Really, this is a tired tale that debate over The Mighty happens to have revived. Take, as just one example, what I wrote last year for the Huffington Post about the parents who didn’t see anything problematic with publicizing a photo of their 16-year-old disabled son wearing nothing but a diaper in a story for NPR. These parents wanted to share their stories as caregivers, and they were well-meaning, but there were so many other ways they could have addressed how they care for their son. They still could have provided an honest look at their lives while also respecting their son’s dignity.

This type of oversharing never sits well with me, but it doesn’t mean I believe parents don’t have a right to share their experiences. And if The Mighty wants to provide a platform for that, great. The problem, though, is that The Mighty constantly tries to be all things to all people, and it’s difficult to find a middle ground between the debaters. The Mighty has the potential to be a vehicle to increase understanding between parent and disabled communities and among society at large, but this can’t happen effectively when there’s a constant tug-of-war between people trying to do the educating.

One article paints disabled people as inspiring for simply living their lives (known as “inspiration porn” and here’s a TED talk by Stella Young about it that you should save to watch later); the next focuses on promoting genuine insight and acceptance. Another article shares the perspective of a non-disabled parent of a disabled child; the next is a piece written by someone who actually has a disability. Is it even possible to foster a peaceful coexistence between non-disabled parents of disabled children and disabled activists, all on one platform?

The Real Question

I’ve stayed quiet about this until now. (Full disclosure: I was invited via email to speak with the editors, as were many disabled writers, when the controversy first came to a head. I took a bit to answer, but they didn’t respond to my reply to set up a call.) I think The Mighty has its merits, and there are certainly gems within the content. In 2014, I had a couple posts republished on there, excited to contribute content to a growing site with a disability focus. (I’ve since asked to have them pulled. They responded to this request right away. Go figure.) On the flip side, I find some of what they post to be harmful, and they seem to be spiraling down a black hole of not handling the current controversy well, thereby alienating a number of their contributors. But to make The Mighty the focal point detracts from a larger conversation at hand. It just happens to be the current online space to raise the question: who should speak for the disability community?

I tackled this question about two years ago, in a post for Think Inclusive. I’m firmly committed to what I wrote: “It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.”

We Should Be a Team. A Real One.

My parents instilled in me the value of speaking up for myself, but they’ve also been there every step of the way, handling things at various times through my life when I could not do so. They were my voice when I needed them, but they never claimed to be the experts on my experiences. They’re the experts on experiencing my life along with me. Semantics, you might say, but there’s a huge difference. Even so, I do find myself conflicted at times, because in many situations, I believe my parents – especially my mom – would have benefitted from stronger sources of community and camaraderie than what they had as I grew up.

Every time I recovered from surgery, every time I went to my parents with tears in my eyes because I’d been excluded from something because of my disability, every time I struggled to do something independently and got frustrated – my parents felt the pain, too. And of course, every time I’ve accomplished a goal or done something I didn’t believe to be possible – my parents felt the pride, too. My life deeply affects and intertwines with my parents at every turn. The role they played, and continue to play, in my life is something I value above all else. We always have been, and always will be, the Three Musketeers.

Like any child, though, as I got older, the situations I found myself in were often ones I wanted to keep to myself. Even when my parents needed an outlet, this is something they understood and respected. It’s also something that should be common sense. No child, disabled or not, deserves to have details of their lives plastered on the Internet by their caregivers. I believe it comes down to this: parents have a right to share, and children have a right to privacy. Can’t we meet in the middle?!

I don’t think it’s productive or necessary to ask parents to back down completely and stop sharing their experiences. I don’t want to alienate the parent community, just as I don’t want to feel alienated as someone who is disabled. But I can’t defend or support oversharing, overbearing parents. This doesn’t mean I’m asking anyone to censor the realities of disability, or that I’m denying the validity and importance of the caregiving experience. I’m asking for everyone to hear what disabled people are saying. Hear us if we ask you to consider how the ways you convey stories about disability may be hurtful or harmful. Hear us when we say that we want you to speak with us, not for us. Voicing your experiences cannot, and should not ever, be at the expense of the perspectives of the disability community, or the dignity of your child. We should all be in this together.

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

Posted on by Emily Ladau

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.

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 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.

Celebrating the Americans with Disabilities Act by Curbing the Heroes

Posted on by Emily Ladau

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. 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.

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.

I Am More Than An Empty Wheelchair: Speaking Up Against Ableism

Posted on by Emily Ladau

When you want to address a person, the next step should be to find a way to convey your message that person, right? So, if your message is intended for me, but you convey it to me by addressing a person I’m with who appears to be non-disabled, it makes me wonder if you perceive me as a person, or as nothing more than an empty wheelchair. What is it about a simple mobility aid that causes so many people I encounter to hesitate to direct communication towards me? All too often, my wheelchair use is perceived as a symbol that I’m incapable of processing what a person says to me, and it’s time for the world to wake up and realize this isn’t true.

But, it’s also time for me to start confronting these issues head on when they happen, rather than waiting until after the fact when I can put fingers to the keyboard and write about what I should have said in response. Unfortunately, an opportunity to put my money where my mouth is recently presented itself while I was at a disability-themed event, of all places.

A group of friends and I (all with disabilities) went on an adventure to see a screening of a documentary called Cinemability at amazing film festival called Reelabilities, held in New York City. With the exception of one of us, we all use some form of mobility aid to get around. Of course, this meant we caused quite the traffic jam while waiting outside the auditorium before the film.

I figured we were in a safe space, one so full of people from the disability community that we wouldn’t be subjected to common ignorance. I was wrong…

“Can you move them over there?” It was such an innocent question. The woman volunteering as an usher looked at the only one in my group of friends who doesn’t use a wheelchair or a walker, hoping he would herd us, “them,” to the back of the lobby to get out of the way for other people using mobility aids. My friend doesn’t appear to have a physical disability when he’s just standing still, so the usher directed her request at him as though he was our chaperone. And while this simple, blatant ableism so often renders me speechless until I come up with the perfect reply in the middle of the night, I just wasn’t willing to sit there and take it that day.

After my friends and I got over the initial frustration, we debated if one of us should say something. Initially, I joked that the comment would make for a great blog post later on. But my reluctance to say something weighed heavily on my mind. If I really want to be an advocate, then I have to do more than advocate from behind a computer screen. So, with my heart racing at the thought of confrontation, I pushed my way through the wheelchair traffic jam straight towards the woman.

I don’t recall exactly what I said, because nerves and anxiety kicked in, but it went something like: “Excuse me, when you told my friend to move ‘them’ over there before, I know you probably didn’t mean anything by it, but I just wanted to let you know for future reference that if your comment is towards someone disabled, you should speak directly to the person. This is especially important since you’re working a disability film festival for the next few days.” The woman looked at me like a deer in headlights and then said “Oh, uh, sorry, I didn’t know. I didn’t mean to.” And then someone else tried to get her attention, and she couldn’t have spun away from me any faster, acting completely engrossed in what the other person was saying.

As I rolled away, I felt a pang of guilt because I knew I had embarrassed the woman and put her on the spot. Then I realized this compulsion to be apologetic, as though displays of ableism are somehow my fault because I exist, just isn’t fair. By confronting ableism in a way that’s firm but polite, then maybe, just maybe, the person will think twice next time they’re in a similar situation.

Or, maybe they’ll go on with their lives and do the same thing again in the future. I’m realistic enough to realize it’ll take more than a response to an isolated instance of ableism – no, more than a million responses – to effect change in society. But I am more than an empty wheelchair; I am a complete human being who sits between a set of wheels, and I deserve to be spoken to directly. So I, for one, am making a promise to myself that I won’t be taking ableism sitting down. Well, at least metaphorically, that is!

4 Lessons Peacocks Can Teach Us About Advocacy

Posted on by Emily Ladau

All it takes is one look around my bedroom to figure out that I have a bit of an obsession with peacocks. My love affair with these mesmerizing creatures began back in the summer of 2008. I must admit I was nowhere near an actual peacock at the time. As it happens, I was at a leadership program filling out a quiz about which animal matches my leadership style. My result was – you guessed it – a peacock!

I know, I know. Deciding I needed to own peacock-themed everything all because of one random leadership quiz might be overkill. Can you blame me, though? They are undoubtedly one of the most beautiful animals on the planet.

Lately, I’ve been thinking back to the root of my passion for peacocks. It might have started with a silly quiz that I barely even remember, but there are definitely some useful lessons in leadership and advocacy that peacocks can teach us.

Make Your Presence Known

Peacocks accomplish this is more ways than one. Of course, you can’t miss their feathers. But have you ever heard peacocks making noise? They have a loud, distinctive sound, which is exactly what the disability community needs to enact real social change. No, I’m not suggesting that advocates should squawk like peacocks to be heard. That being said, disability activists are silenced far too often when advocating for our rights. An effective advocate can channel their inner peacock by letting people know they are unmistakably present.

Show Your True Colors

I’m a firm believer in not judging people by their outward appearance, and I’m aware that using physical characteristics of peacocks as analogies for advocacy could be perceived as superficial. However, when I talk about true colors, I don’t just mean on the outside. Something I’m working on this year is self-acceptance, and part of that is being myself no matter what. It’s hard to do this all the time, but I think the best advocates are the ones who don’t shy away from letting people know exactly who they are – inside and out.

Be Bold

One of the reasons I love peacocks so much is that nothing about them is subtle. They command attention, and I’m pretty sure it’s safe to say they know it. Being able to captivate someone is most definitely an art form and peacocks are lucky it comes naturally to them. I, on the other hand, have had to figure out the best techniques for keeping someone engaged in a room full of people. Granted, sitting in a big old wheelchair is kind of like having peacock feathers because it makes me pretty noticeable. But, when it comes to advocacy, there are so many amazing power players, and lots of them are making a difference for the disability community because they’re not afraid to be bold. They stand out among their surroundings…and even among other peacocks.

Go For It

I didn’t actually learn this one from a peacock, but because of one. In 2011, while on a trip to Israel, my cousin Heather and I spotted a peacock roaming around a kibbutz (a communal settlement). I had seen peacocks in exhibits before, but never just existing in nature like they should be. Obviously, I was ridiculously excited, so my cousin and I took off after the peacock in an attempt to get a picture. We should have let the poor animal be, because we didn’t get to it in time for a clear photo. Heather tried her best to get close enough, but everything we got was blurry. There was a silver lining, though, because while we didn’t get a good picture, Heather ran into a resident of the kibbutz who ended up teaching us how to say “peacock” in Hebrew. (Tah-vas, in case you were wondering.) There’s absolutely a lesson to be found in this experience. When you want to accomplish something, go for it! Even if you don’t exactly meet your goal, you’ll still get something beneficial to take away from the experience.

And who knows? What you learn just might help bring out your inner peacock advocate.

>