Trapped on the Train: The Endless Wait for NYC’s Transit System to Be Made Accessible

Collage of inaccessible moments within the MTA system

I arrived at Penn Station in NYC at 5:05pm. I had somewhere I needed to be at 5:45, in theory just a 10 minute subway ride away. As a wheelchair user, I knew that leaving only 40 minutes to get to my destination using a notoriously inaccessible public transit system was a risky move, but I was working with the time I had.

Silly me, hoping that a system designed to exclude disabled people would actually come through.

The Long Island Railroad train I was on pulled in on track 20, where the elevator to the platform hasn’t been in working order for months. There’s a lift available for anyone who can’t climb stairs, but you need a key to use it, and it has to be operated by an MTA employee. Of course, an employee was nowhere to be found when my train arrived. The clock was ticking. I scrambled around the platform searching for help, pushing the attendant call button, finally seeking assistance from a janitor who agreed to find someone. Several minutes later, I was finally on the lift—an agonizingly slow ride with a blaring chime. This little setback was the worst of it, I hoped.

Photo of Emily on stair lift
Image description: Photo of me, a white woman sitting in a power wheelchair, wearing a winter coat and jeans, with a mask on my face and a frustrated look in my eyes. I’m on a chair lift that’s halfway up a steep staircase. It’s being operated by an MTA employee, while another one stands watch. At the bottom of the staircase is a person in a scooter waiting their turn for the lift.

I rushed to the subway and caught the C train to 59th Street-Columbus Circle. I was still making good time. When the doors opened at my stop, I was facing the biggest gap between the train and the platform I’ve ever encountered on the subway. I knew there was no way I’d get over the gap safely on my own. My front wheels would get stuck and I’d go flying. 

I frantically called out for help, hoping I could figure it out and get off the train. Two conductors came out and told me they couldn’t help. By that point, I was holding up the train. Everyone was staring at me. I was trapped, told I had no choice but to ride the subway to the next accessible stop, change platforms, and double back.

Photo of subway gap
Image description: Photo taken from my vantage point in my wheelchair, looking down at a very large gap between the train and the platform.

So, where was the next accessible stop on the line? 125th Street. There were 9 stops and 66 blocks between accessible stations. 

I internalized quite early in life that the burden is supposed to be on me to stay calm and deal with whatever access barriers come my way. But this time, as the train doors closed at 59th, something in me snapped. I began crying uncontrollably. 

In the grand scheme of things, this was hardly the worst access issue I’ve encountered (and it’s far from the worst thing happening to disabled people right now more broadly, especially as COVID continues). And it was the umpteenth broken elevator scenario I’ve found myself in. Ultimately, it turned out to be an infuriating, demoralizing hour and a half of my life that ended okay. I made it to my destination, albeit 45 minutes late.

It wasn’t these particular 90 minutes that I wept for, though. A heavy sense of defeat washed over me as I wondered how much time I’ve lost to inaccessibility. To the endless calls I’ve made asking if I can enter a business or use their restroom. To the attempted moments of joyful spontaneity, only to be turned away by stairs. To the roundabout journeys to back alley dumpsters that leave me feeling like human garbage, because that’s the only accessible way to enter a building. To the seemingly endless waiting for access to the world around me, as though it’s a privilege and not a basic right for all.

I cried because I felt like a fraud. Just that morning, I’d given a presentation that included discussion of systemic ableism—barriers and discrimination built into the world around us. I’d been so sure of myself as I went through my talking points, highlighting the effects of ableism and inaccessibility, explaining how and why society must change. But as I sat helplessly on the train, everything I’d said rang hollow in my head. My gut instinct was to keep apologizing to my boyfriend, who was waiting for my arrival. No matter how many times he patiently reassured me this was out of my hands and that I was in no way to blame, my guilt was unshakable. I couldn’t reconcile how I’d gone from empowered activist to apologizing as if inaccessibility is my fault in the span of a few hours.

In my presentations, I generally use public transportation as an example of systemic ableism. Healthcare, education, employment, government…you name a system, and I’ll show you ableism at its core. But inaccessible transportation systems are particularly problematic, because so much of our existence and participation in other systems relies on our ability to get from point A to point B.

Disability advocates have been screaming into megaphones about transportation access issues for decades, and despite their best efforts, progress has been excruciatingly slow. Last year, I provided a declaration for class certification in a case against MTA. Earlier this year, the New York Supreme Court certified “a class of all people with disabilities for whom the use of stairs is difficult or impossible and who are therefore unable to access over 75% of the New York City subway.” I’m still hopeful change is coming, but remain haunted by nightmares of the time in 2018 when the fire department came to carry me up the stairs at the 14th Street-Union Square station because the elevator was out of service. 

Emily surrounded by FDNY
Image description: Photo of me sitting in my power wheelchair in a subway station, surrounded by firefighters and EMTs figuring out how to safely lift me and my chair up a steep flight of stairs.

Rather than actually making a sustained effort to fix things, it seems like MTA bleeds money and accomplishes little. They pour funds into fighting lawsuits brought against them for inaccessibility and make redesign plans that will supposedly inch them closer to compliance with the Americans with Disabilities Act (which passed over 30 years ago). It’s inexcusable. But it’s reality.

I’ve had a lifetime of practice navigating inaccessible systems and advocating to change them. Yet I continue to wait for access. Disabled people around the world continue to wait for access.

How much more time must we lose to waiting?

The Best Chair Exercise Videos

A photo of pink, green, and blue plastic chairs, stacked. Next to the image is text that reads "The Best Chair Exercise Videos"

Years ago, as I was growing into a stronger sense of disability identity and gaining a deeper understanding of ableism, I read an article that scared me out of my mind. Dr. James Levine, a Mayo Clinic endocrinologist, sounded the alarm on sitting: “There’s a glob of information that sitting is killing us…You’re basically sitting yourself into a coffin.” I know the science is real about how sitting too much poses health risks, but I’m tired of being told my wheelchair is just a ticket to an early grave. Articles on potential health problems caused by sitting almost always focus on solutions suited to people without mobility limitations. Rarely do I see detailed fitness resources for people who sit on the regular (like me), so I’m going to share a round up of my favorite free chair exercise videos.

Keep in mind that just because the exercises are done a certain way in these videos, nothing is set in stone. Adapt as needed. Also, note that some of these require inexpensive exercise equipment like resistance bands or dumbbells. And these videos aren’t just for wheelchair users. Seated exercise can be ideal for people at any fitness level. Especially now that we’re in the midst of a pandemic and going to the gym isn’t an option, I hope these videos help you start or shake up your exercise routine. 

Most importantly, be gentle with yourself. Don’t pressure yourself to exercise. Do what feels right for you and your body.

(Disclaimer: I’ll be honest…some of the disability-related language in these videos isn’t great, but I’m trying to include a wide range of options.)

1) If you want a good kick in the butt, Caroline Jordan is your girl. Her upbeat attitude makes me feel like I have a personal trainer in my living room. Click here for her full playlist of chair workouts.

2) Pahla Bowers is super down-to-earth and relatable, which makes her workouts enjoyable, even though they’re tiring. Click here for her full playlist of chair workouts.

3) SparkPeople’s videos are short and sweet, and Coach Nicole is really easy to follow.
Seated Cardio Workout: Burn Calories Exercising from a Chair
Seated Abs Workout: Chair Exercises for Your Core
Seated Upper Body Toning Workout: Chair Strength Training Exercises
Resistance Band Workout

4) KymNonStop is a barrel of energy and her running commentary keeps me entertained while I’m working out.
Intense Seated Workout
Seated Cardio Boxing Workout
Cardio & Core Seated Workout
Seated Circuit Workout
Challenging Seated Workout

5) HASfit offers videos that demonstrate workouts for varied abilities, including some that show seated and standing variations of the same exercises.
Chair Exercises Sitting Down Workout
Standing & Seated Exercise

6) Chair Workouts with Donovan Green are power-packed and totally energizing. Click here for his full playlist of chair workouts.

7) Jessica Smith’s chair exercise videos make you feel like you’re on a gym date with a friend.
Chair Workout I + II (seated cardio, strength, fat burning low impact exercise)
Chair Stretch (quick stretch, seated exercise)
Seated Exercises for Abs, Legs, Arms

8) Fuzion Fitness with Alexis is great for anyone looking for a slightly more relaxed workout. Plenty of good vibes in the background music.
Chair Workout #1
Chair Workout #2

9) Fair warning: Paul Eugene’s videos can come across as overly enthusiastic, but they’re secretly kind of fun.
Turbo Chair Workout
Sit and Get Fit

10) Lucy Wyndham-Read’s video style is helpful because she puts a description of each set of reps on the screen and also gives you previews of what moves are coming up next. Click here for her full playlist of chair workouts.

11) If you’re in the mood for a good 1980’s workout routine, Lisa Ericson has you covered.
Seated Aerobic Workout

12) Adapt to Perform’s YouTube channel is a goldmine of workout videos from Ben Clark, who is a wheelchair user. Click here to check out his channel.

Any good chair exercise videos that I missed in this list? Or do you have other ways that you like to adapt exercise routines? Share so we can keep moving!

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.

Is the Restroom Accessible? That’s Up in the Air

A background image of blue, red, and white mini wooden airplanes. The text reads "Is the restroom accessible? That's up in the air."

When you’re getting ready to go on a flight, what’s on your last-minute to-do list? Mine looks a little something like this:

  • Make sure I packed enough underwear
  • Charge my Kindle
  • Start limiting the amount of liquid I drink

Does that last one seem a little strange to you? Well, for wheelchair users who are unable to get up and walk (like yours truly), limiting what we drink before flight is often the norm, because there’s simply no way for us to access the restrooms aboard a plane.

But bathrooms are something most people take for granted, and so they drink to their hearts’ content before and during a fight. Most people simply can’t imagine not having access to a place to relieve themselves wherever they go. And for that reason, I’m not all that surprised by a report that a Delta flight from New York City to Seattle had to go hundreds of miles out of its way to make an emergency pit stop just because the plane’s toilets were broken and people had to go right now.

Let me tell you something: I just took a flight from New York City to Seattle a few months ago. Heck, I’ve flown from New York City to Israel. And you know what I had to do on those flights, and every other flight I’ve ever been on? Hold it. I’ve gone without peeing for upwards of 14 hours so I could travel.

On the flights where I’ve found myself needing to use the restroom in spite of my valiant efforts to avoid drinking anything, the only solution was to meditate and deal with it. Seriously. No way would a pilot divert a flight because I needed to “find relief of built-up pressures.”

Once, during a flight home from Minneapolis, I had the misfortune of experiencing motion sickness. Fair warning: what I’m about to say may not be fun to read if you’re easily made to feel queasy.

I asked the flight attendant for a motion sickness bag, but she didn’t take my request seriously and took her sweet time getting it. Since I couldn’t get up to go to the restroom, I got sick all over myself. And then, you know what happened? My dignity took a nosedive and I had to change out of my vomit covered clothes in the middle of the airplane while the flight attendant who didn’t get me the paper bag in time held up a blanket to try to give me a modicum of privacy.

Why am I telling you all this? To highlight what it’s like to be disabled in a world designed by people who don’t take you into account.

I spend my life (not an exaggeration) strategizing every move, big or small. From researching if I’ll be able to get into the new restaurant a friend suggests for dinner, to deciding if I should stay on a long sidewalk in the hopes there’s a curb cut at the other end, to figuring out when I’ll next be near a restroom I can actually use­­––everything requires planning.

Of course, it’s possible that people on the Delta flight had other types of disabilities, chronic conditions, or age-related bladder or bowel issues, so yes, I get why the plane landed, but the world sure doesn’t accommodate me with emergency landings.

But there are laws to make things accessible, you might say. True. The Americans with Disabilities Act was passed over 27 years ago to prohibit discrimination and provide access for disabled people in all areas of public life, but even with amendments to update the law, inaccessibility is still everywhere. The Air Carrier Access Act (which significantly fewer people know exists, including, seemingly, airline personnel) was passed nearly 32 years ago, with the intent of ensuring the disability community has access to air travel. Yet, though it’s since been amended, the law still allows for aircraft with only one aisle to have inaccessible restrooms. These types of planes, known as narrow-body planes, are used by commercial airlines pretty darn frequently.

Even so, I need to travel for work. I have to go places in order to go about my day. I have the right to be an active member of my community.

I could wrap up with a broad, sweeping call to action to improve upon accessibility everywhere, from storefronts to airplanes, but I believe this kind of change won’t happen without recognition of just how easy it is to take access for granted.

I admit that I roll my eyes when people who break their leg or have surgery that temporarily impacts their mobility tell me they “get” what I “go through” every day, but there’s still a lesson to be learned from these comments: the ability to access wherever you please doesn’t matter to people, until one day it does. Anyone can become disabled at any time.

That may sound intimidating, but think about it: if you became disabled tomorrow, wouldn’t you want to live in a world where you had access to basic things like restrooms anywhere you go? People don’t think about the possibility of not being able to use the restroom until access to this basic need is taken away from them, just like the situation on the Delta flight.

It shouldn’t have to be this way. Full bladders should not inhibit full participation in society for the disability community.

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.

Guest Post by Ellen Ladau: Mother and Daughter – Same Disability, Different Experiences

When contemplating who to invite to write the first guest post for Words I Wheel By, I didn’t have to search any further than inside the walls of my house. I knew right away that asking my mom, Ellen, to write a post would provide a valuable new voice to my blog. If you’ve read some of my previous posts, you’ll know that my mom and I both have the same disability – Larsen syndrome. Because of this, and for so many other reasons, she is the person who understands me best. Being a disabled parent of a disabled child, my mom has unique perspectives that I’ve always found to be a guiding light as I navigate through my daily life. She taught me the importance of self-advocacy and she has been my editor- and conversationalist-in-chief for all things related to disabilities and my blog. Together, we try to educate people about our disability, equality, and acceptance. And while I didn’t want to edit her words, my mom is far too modest about the role she and my dad play in my life. They are the most amazing parents I could ever ask for. As you’ll read in my mom’s first post, we have so many disability-related experiences in common, and yet our lives have also been quite different. This is a definite sign of how disability rights have changed over the years. 

Even though I am 52 years old, I do not think I have ever spent so much time pondering disability issues as I have since Emily, my daughter, started this blog.  The conversations we have had before, during, and after she writes her posts have been illuminating and have further reinforced how her experiences growing up with a visible physical disability have been very different from my own.

A little family history might be useful now.  My parents are unaffected by Larsen syndrome (LS); same for my older brother.  But I have a younger brother who like me has LS.  It was his birth that led the doctors to suspect a genetic disorder.  However, once our anomalies were diagnosed as LS, our family was assured it was a recessive disorder.  This means that both parents must have the defective gene for the condition to be passed on to a child.  Now flash forward to when I became engaged to my wonderful husband Marc:  we once again consulted with the same genetic specialists who told us that the gene for LS is so rare that we would not have an affected child.  But at my twenty-week sonogram with then fetal Emily, the telltale signs of LS were detected and we knew that our future as a family would again be forever affected.  Only then did the doctors realize that the LS affecting my family was really a dominant genetic disorder.

I am not going to lie – I was emotionally devastated when I knew Emily would face the same physical and emotional challenges that my brother and I did as children.  And truth be told, Emily has had to face even more hurdles and challenging surgeries such as cervical spine fusion when she was 17; she spent much of her senior year in high school in a halo used to stabilize her head and neck while it healed from the extremely risky operation.  But incredibly she has matured into a much more positive, confident, and outgoing person than I am.  While it would be wonderful to think her Dad and I can take all the credit for her successes, I think we truly owe a debt of gratitude to all the disability advocates who are responsible for the ADA and all the other programs and services for individuals with disabilities that resulted from passage of this landmark legislation.  Because of things like curb cuts, accessible bathrooms in public places, and accessible public transportation, people with all kinds of disabilities are much more visible in all our daily lives.  When I was growing up, other than my brother, we only regularly saw one other boy with a visible physical disability.

In addition to the benefits of the ADA, the development of the Internet has had a profound effect on how people with all types of disabilities can communicate today. When we were kids, we only knew of one other person with our orthopedic condition and this happened by a stroke of good fortune: I was perusing the TV Guide one day and saw an ad for the TV show ZOOM which was featuring a girl with LS.  We had to write to the TV station that produced Zoom to ask that they contact the girl and her family to see if they would be interested in contacting us.  They were, and a flurry of letters soon went back and forth.  Today, I am friends with this woman on Facebook, as well as being connected with many other people who either have LS or are the parents of an affected child.  The ease in which people with all types of conditions can exchange essential information and provide support via Facebook, Skype, etc. makes having a disabling condition so much less isolating.

While there is certainly still much work to be done, as Emily shares in many of her blog posts, having a disability no longer precludes participation in the usual childhood recreations or adult occupations.  For example, new playgrounds are being designed to include wheelchair access so all children can interact just as all new public construction projects (and many private ones as well) follow the principles of universal design to maximize the population of people who can enter and conduct the business of daily living.  And with the continued efforts of advocates such as my wonderful daughter, the sky is the limit as to what can still be accomplished!