Emily Ladau - Words I Wheel By

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

Posted on January 13, 2016August 12, 2021 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.

What I Want Future Teachers to Know About Students with Disabilities

Posted on August 25, 2015November 15, 2021 by Emily Ladau

One of my favorite things about writing on disability is that it ignites conversations and sparks perspective shifts (both mine and others). Recently, I got an email from someone I connected with at a conference, and her questions got my wheels turning.

The email read:

“Since we met last year at the AUCD conference, I have completed my PhD and landed my first assistant professor job. I am writing because I would like your input on how to address vocabulary with my students. I am a certified ‘special’ education teacher. Textbooks for my courses have either ‘special’ or ‘exceptional’ in the titles. The laws and legislation include the same vocabulary. From your perspective, how can I address the ‘special’ vocabulary? What are the three (or more) main concepts/ideas/philosophies you want preservice teachers to know? What advice do you have for me as I prepare future educators? Thank you, Emily. I look forward to hearing from you.”

Tackling Terminology

“Special, “exceptional,” and other sugar-coated words like this are all too common in professional, legal, and academic settings. They’re euphemistic, a way to avoid mention of disability, because disability is far too often perceived as a dirty word.

From my perspective, every child has unique needs in the classroom. And yet, students with disabilities are still differentiated and given labels for requiring certain adaptations or accommodations. The “special” students have extended time to take tests. The “exceptional” students must take adapted physical education. But doesn’t each student have different learning styles and different ways of getting things done? True, not all students have an Individualized Education Program (IEP) or 504 Plan. But just because the means may be different from a typical student, the end is the same. The test is done. The class is completed.

Moreover, in spite of attempts to avoid calling attention to disability, “special education” has taken on negative social connotations of its own. Unfortunately, though, there is no universally accepted alternative term. I’d suggest “adaptive education” as another option, because it has the most accurate definition: education that is modified to be suitable.

But since “special education” is the term we’ve got to work with, I feel it’s less critical to focus on a language shift, and more important to encourage a mentality shift. Educators should always remember that students who require various forms of special education are equal to all other students. A phrase does not define a whole person.

What Should Future Teachers Know?

Students in special education programs are going to grow up. I know this sounds obvious to the point of almost being silly, but “special” can follow people throughout their lives. Students who have diverse academic needs still deserve to receive an education that both brings them to and meets their fullest potential.

Second, the best kind of education is inclusive education. I’m not entirely denouncing programs that are targeted for students with disabilities, but all students deserve the same opportunities. Segregating students with disabilities from their peers sends the message that differences are bad, and that separation is the norm, and this is an incredibly harmful line of thinking to promote.

Of course, in inclusive classrooms, differences between students of all abilities will be evident from time to time. In cases like these, I cannot stress enough the third thing I hope teachers will heed: please, please do not tokenize students or call them out in front of everyone. I can’t tell you how many times teachers called unwanted attention to my disability in unnecessary ways, all the way from kindergarten through college. For instance, teachers would say things like “Everyone stand up, but you don’t have to, Emily.” Everyone knew I use a wheelchair and it was obvious I couldn’t stand up, so why point it out? The best bet is to plan ahead to make an activity work for all of your students. That way, it will run smoothly and you’ll avoid encountering accessibility obstacles.

Ways to Educate Educators-in-Training

All teachers start somewhere when it comes to learning about how to accommodate students with disabilities in the classroom. Those who educate future educators are in an incredible position to break the chain of discrimination and inequality, bringing acceptance of disability to all areas of society. I believe the key to ensuring that teachers are prepared is to expose them to an extensive variety of viewpoints on disability. Sure, there are standard textbooks geared specifically towards “special education,” but I strongly urge going beyond them. Read pieces reflecting on educational experiences written by people who are actually disabled. Explain that there are multiple ways that the disability community chooses to identify themselves. Better yet, invite actual disabled people into your class to speak with future teachers and give insight into their experiences! (I’m available for speaking engagements!)

Taking all of this into account, here’s the most important piece of wisdom you can impart to future teachers is: if you’ve taught one student with a disability, then you’ve taught one student with a disability. All of the training, all of the textbooks, and all of the guest speakers in the world cannot ever encompass the full range of the disability experience, or the experience of teaching someone disabled. And this may sound intimidating. But when you really think about it, what this means is quite simple. Disabled students should be treated and taught like all other students, each who have their own personality, styles of learning, and strengths and weaknesses.

It comes down to this: All students are individuals. All students have differences. All students are human.

25 Ways the Americans with Disabilities Act Sparked Positive Change in the United States

Posted on April 19, 2015December 29, 2021 by Emily Ladau

With the 25th anniversary of the passage of the Americans with Disabilities Act (ADA) fast approaching, plans for celebrations are launching into high gear. I love any reason to join a party, so I’m obviously pretty excited.

But let’s get serious – ADA 25 is an awe-inspiring, momentous occasion that deserves the highest honor. On July 26, 1990, the world-changing disability rights movement leaders who fought so hard for the U.S. government to ensure the rights of the disability community finally achieved victory when President Bush, Sr. signed the ADA into law. They are some of my biggest heroes, these activists who put themselves on the front-lines to spark change for generations to come.

And now, the time is here to honor the legacy of the ADA and its rich history.

I’m a big fan of lists, so what better way to show a little love to the ADA than to share a list of all of the important ways the ADA has brought change to the United States?

25 Ways the Americans with Disabilities Act Sparked Positive Change in the United States

Curb cuts
More equal opportunities for people with all types of disabilities to receive a public education
Increased accessible public transportation
Service animals are more accepted in public
Reasonable accommodations
Greater social involvement among the disability community in all areas of society
More civic engagement, i.e. voting
Expanded employment opportunities for disabled people
Gives a stronger voice to the world’s largest minority
Provides a platform of civil rights for the disability community
Disabled athletes can thrive in adaptive sports
Support systems exist for people with all types of disabilities
Misconceptions and prejudices can be more easily debunked
There is a bigger presence of disability in the media
Adaptive products are more widely available
There is a bigger focus on studying disability in academia
Paved the way for further legislative policy advancement for disability rights
Serves as a common bond for all people with disabilities in the United States
Provides a legal basis to maintain momentum in pursuing accessibility and justice
Automatic door openers have become much more common in public places
Helps prevent discriminatory actions or retaliation
Social recognition of disabled people as full, contributing citizens
Acts as a symbol of disability pride and culture
Serves as a reminder of the positive potential of bipartisanship
Created a legacy for current and future generations of young activists as we carry the torch forward

Within this list, decades of progress are reflected. Yet, I know the work of disability rights advocates is far from finished. I know that on days when we, as disabled people, face discrimination or access barriers, we may find ourselves forgetting the battles that have already been fought. We must remember, though, the immense passion and dedication of the activists whose ADA victory was hard-won. We must never take for granted the progress society has made in the past 25 years, and in the next 25 years, the disability community and non-disabled allies alike must continue to work to honor the legacy of generations before us by continuing to roll forward the wheels of progress and change.

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

Posted on July 29, 2014August 12, 2021 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 July 26, 2014August 12, 2021 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.

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

Posted on June 15, 2014August 12, 2021 by Emily Ladau

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.