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.

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.

“There’s No Room For You Here.” – On Encountering Discrimination

I have a little tradition to search for handmade jewelry when I travel, usually rings or earrings. It’s my favorite way to bring home a piece of where I’ve been. Since I just visited New Mexico for the first time to join my family in celebrating my cousin’s wedding, I was especially excited to see what I’d find because I love southwestern jewelry designs. My mom (who also uses a wheelchair), my dad, and I ventured to Old Town in Albuquerque one afternoon to look around and when we reached the first shop, Native Gallery, I was immediately drawn to rows of earrings and beautiful pottery.

Not even 10 seconds after entering the shop, I gravitated toward some rainbow bowls in the front of the store and was already contemplating buying one when the shopkeeper came over to my family and said “there’s no room for you here.”

Mind you, the aisles were a bit narrow but I have the depth perception to know my wheelchair would fit through and the common sense not to drive like a wild woman through a store full of valuable breakables. There was undeniably room for us. So, I began to explain that we were fine and would be very careful, but the shopkeeper again insisted there was “no room” for us and demanded we leave.

My dad, who was standing up and is obviously taller than me, could plainly see the shopkeeper was lying about the lack of space. In fact, aside from the one couple he was ringing up, there wasn’t a single other customer in the store. There was plenty of room. Based on the look of horror on the shopkeeper’s face when he saw two wheelchair users roll through the entrance, the urgency with which he jumped up to ask us to leave, and his persistent arguing that we couldn’t stay, it was clear he just didn’t want us to patronize his shop, or assumed we’d cause damage, and so he thought it best to kick us out rather than finding a way to accommodate us.

I sort of get it, maybe. Power wheelchairs in a store full of fragile pottery are risky and the shopkeeper wanted to protect his goods, but the reality is that anyone could accidentally break something. At the very least, he could’ve offered to bring some pieces to the front for us. But no matter how many times we pointed out that turning disabled people away from your public business is discriminatory and illegal, the shopkeeper ultimately forced us away.

I just wanted to buy a ring. I wanted a taste of what New Mexico has to offer. I wanted to enjoy the late afternoon sun and the colorful boutiques with my parents. I love exploring new places. Yet it seems every time I try to embrace my independence like any other human being, someone stops me in my tracks and reminds me that disabled people are still not fully welcome in this world we inhabit.

In most cases, it’s structural barriers that prove unwelcoming. Steps and narrow entryways are warning signs to stay away. Because of this, I’m generally inclined to give my business to places where the architecture isn’t keeping me out. Of course, there are plenty of instances where I take one look at a place and can tell there’s no way I will actually be able to navigate safely or easily. But I have learned to make my way around in environments not designed with accessibility in mind. I have learned how to weave through curves and make sharp turns, how to roll forward at just the right angle and slip through tight spaces. Within the realms of accessibility, where I go is my decision to make.

And so, even as the sting of this encounter flowed through me, I was still determined to find a ring. We went to a shop around the block called de Colores Galleria. There, the owner was lovely, accommodating my mom and I as we narrowed down our jewelry options, never making us feel as though we were unwelcome or in the way.

While she helped us, my mom shared with the woman behind the jewelry counter what had happened at the other shop. The woman was mortified, apologizing on behalf of Old Town. “I’m so sorry,” she said. “That’s not good for Old Town. And that’s not good for you.” We appreciated that, and thanked her profusely for her hospitality before we left.

My mom and I felt compelled to thank the second shopkeeper because her kindness was such a refreshing change from our first encounter. That said, we were essentially thanking this woman for treating us like people. It’s a painful reality of my existence that I find myself expressing gratitude when people communicate with me in such a way that shows they see me as deserving of equality and respect.

As I sat down to recount this shopping debacle in writing, my stomach tightened at the thought that issues such as this – the ones I so desperately wish to see eliminated – are the ones on which I’ve built a platform and a career. The frequency with which I experience and write about ableism has become a twisted form of job security, because deep down I know I will never run out of stories to share. And yet, what I would give for an end to the writing fodder, as it would mean a world finally without encountering discrimination.

I am tired of the days when simple moments of enjoying life are shattered by someone else’s lack of understanding and acceptance. I am a tireless activist, but I am still tired.

I kept the ring that I picked from the second shop on my finger as I wrote this. It now has a place as one of the most bittersweet pieces in my collection, but I treasure it. I will wear it with joy not only because it is a reminder to keep up the fight even when I feel defeated, but also because of the other memories it holds: eating raspberries straight from the bush in my family’s backyard, the hazy mountain view surrounding us, twirling around the dance floor with my dad at my cousin’s wedding, peering out of a tram with my family as it reached 10,378 feet, and – most beautiful of all – being with people I love, who love me, and who welcome and accept me as I am.

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

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

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

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

1) Curb cuts

2) More equal opportunities for people with all types of disabilities to receive a public education

3) Increased accessible public transportation

4) Service animals are more accepted in public

5) Reasonable accommodations

6) Greater social involvement among the disability community in all areas of society

7) More civic engagement, i.e. voting

8) Expanded employment opportunities for disabled people

9) Gives a stronger voice to the world’s largest minority

10) Provides a platform of civil rights for the disability community

11) Disabled athletes can thrive in adaptive sports

12) Support systems exist for people with all types of disabilities

13) Misconceptions and prejudices can be more easily debunked

14) There is a bigger presence of disability in the media

15) Adaptive products are more widely available.

16) There is a bigger focus on studying disability in academia

17) Paved the way for further legislative policy advancement for disability rights

18) Serves as a common bond for all people with disabilities in the United States

19) Provides a legal basis to maintain momentum in pursuing accessibility and justice

20) Automatic door openers have become much more common in public places

21) Helps prevent discriminatory actions or retaliation

22) Social recognition of disabled people as full, contributing citizens

23) Acts as a symbol of disability pride and culture

24) Serves as a reminder of the positive potential of bipartisanship

25) 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.

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. 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.

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