Loving Conversations

Every July since 1990 when the Americans with Disabilities Act (ADA) was passed into law, I’ve felt the urge, or more accurately the pressure, to write something thoughtful that includes the essential message that disability is just one of many factors of the human experience and those of us who live with disability are no less human for the experience. Of course, I deliver this message all the time both at work and in my personal life, not just during Disability Pride Month. I have been delivering this message since I was old enough to understand that a lot of people have a large knowledge gap about disability and their fear of what the experience might be prevents most from really thinking about it beyond something to avoid at all costs. As a result, this fear/avoidance translates into poor performance when encountering people with disabilities and a world designed without due consideration of the needs of all the people living in it. Yes, the ADA and similar laws were passed to help offset this discrepancy and we are seeing an improvement in the design of buildings, public spaces and when really smart people are involved, less discrimination in the workplace and in service delivery.

While my 43-year career has focused on increasing equity for people with disabilities, disability is also deeply personal for me. I find that at 63 years old, I am well and truly angry about disability discrimination and the willful, continuing ignorance that allows that discrimination to linger and even grow. I find that some people are only giving lip service to disability equity while they are all too ready to abandon the concept whenever it is openly challenged. Technology companies large and small develop software and web-based applications as tools to enhance productivity in the workplace, and every day I struggle to keep up because how these technologies interface with my screen-reading software is at best inconsistent, cumbersome and lagging behind every upgrade release, or at worst never considered at all, making it difficult for me to compete with my colleagues. I’ve instead risked my health over the years by developing a pattern of overachieving in other ways in order to make myself a beneficial employee despite the difficulty in filling out time sheets or collaborating on documents in shared spaces. The fact that this has been necessary frustrates me. True equity would afford me the opportunity to maintain employment while being an average worker. The number of people who I personally know who are blind and who have been seriously injured by drivers who didn’t see them because they weren’t considering pedestrians as they maneuvered their vehicles through traffic, continues to grow, while legal remedies for such negligence are still mostly nonexistent, and this enrages me almost beyond rational thought.

So, am I turning into a curmudgeon who shakes her fist at all perceived infractions against people with disabilities in this still mostly inequitable world? Probably not, though I reserve the right to shake my fist when I feel like it. I still believe that the best path forward is to continue to educate and allow people to build their knowledge base around disability and evolve into a social consciousness that no longer shuns diversity, but I’m also done pretending that ignorance is acceptable. It’s just not. Most of what people need to learn about the disability experience are things I can’t actually teach. Real change requires that knowledge shared is internalized, processed and used to inform thought and action. Each of us must take on that responsibility for personal growth if we want to really create change. So rather than waiting for me and others like me to teach you what you need to know about disability, try educating yourself.

The next time you are walking around the neighborhood, think about what the experience would be like if you were sitting in a wheelchair. How would that change your line of sight as you look around? Would it change the path you choose? What would it feel like? Is the path smooth and easy to roll across or are there barriers that limit progress?

Stop wherever you are right now and use senses other than vision to experience the space you are in. Close your eyes if that is helpful, but it’s not necessary. Just focus on sound or smell, or touch. What do you hear? What can you deduce about your surroundings through sound alone? How would adding touch to the experience improve what you know about what is around you?

When people are asked to think about what it is like to be blind, they spend a lot of time thinking about the not seeing part. I get it. It scares a lot of people and makes even more feel uncomfortable. But you’re not being asked to go blind, just to think about it rationally. What happens after you spend an inordinate amount of time pondering the concept of not seeing? Can you make yourself work past this just a little bit to think about alternative ways of accomplishing the things you already know how to do? Would you really choose to give up on experiencing life because one of your five senses doesn’t work like everyone else’s? Isn’t it more likely that after you are done wallowing in this sense of loss for a while, that you’d start to adapt? And once you start adapting, might you also then start to consider how to build some serious skills that would provide even more independence? And if you’ve made it this far, can you entertain the notion that there are advantages to developing a better sense of touch, hearing, smell, and taste? Might it actually change your view of life around you because you now have additional perspectives from which to observe the world?

So, this is my disability pride message for 2022. I’m blind. I use my other senses and select tools I find useful to do the same things everyone else does. I’m not amazing. I’m not subpar. I am a subject matter expert in a few things, and am of average intelligence in a lot of other things. I try to be kind , but I’m not very patient. I am generally upbeat, but I can also be a grouch with a sharp tongue.

Wait. Is this becoming an song? “And what it all comes down to is that [we] haven’t got it all figured out just yet. I’ve got one hand [on my cane] and the other one is giving a peace sign.”

My Disability Pride month story starts with the truth – I wasn’t always so proud.

15 years ago, lying in a hospital bed in Atlanta, I was insecure and depressed. I was paralyzed.

At first, I didn’t want to live – it all just seemed too hard to handle. Life wouldn’t be the same and wouldn’t be worth living. A few weeks passed, and I was halfway convinced I was living in a bad dream. Surely, I would soon wake up to my old life, where I could walk, throw a baseball, and wax my truck.

After a few months, the reality of my injury slowly set in, and I started to accept what had happened. In doing so, I regained a bit of my humor, but lacked confidence.

As I tried to cope with my new normal as a quadriplegic, I was incredibly lucky to have a unique security blanket in the nurses and therapists at the Shepherd Center. Shepherd, a traumatic brain injury and spinal cord injury hospital, was an excellent place for me and my family to learn our new normal. It was at Shepherd where I got my first wheelchair, learned voice recognition, and started my first therapies.

Shepherd was full of people who understood spinal cord injury. As I rolled around the hallways halfway dressed, a halo attached to my head, and a ventilator tube attached to my neck, no one looked at me differently. We were all normal. We were all there to support each other. It was home.

After four months at Shepherd, I returned home to Evansville, but I felt very vulnerable. No longer were we surrounded by nurses who always knew what to do. We were “out in the wild” of the world, where most people didn’t know a thing about spinal cord injury. It scared the hell out of me.

I can distinctly remember my first trip to the movie theater in Evansville. My friends were ecstatic to check out the newly released “Superman,” who coincidentally – with the influence of Christopher Reeve, a fellow quadriplegic – had quickly become my new “superhero icon.”

We loaded up in my big, clunky blue van, and made our way to Showplace Cinemas. That first van we owned was awful. It was way too big, it rode terribly rough, and worst of all, IT WAS A VAN. As a young man who prided himself on his bad ass trucks, I was now stuck in a blue Ford van! Depressing.

As we parked at the theater, I felt a tingle of excitement to check out a new film, and bond with my friends. But, I was nervous as to how people in the movie theater would react to the sounds of my ventilator (much like a loud Darth Vader breathing) during the quiet parts of the movie. Would that bother people? Would I be an inconvenience? I told myself all would be okay.

“Errrgg……” the bulky ramp folded out from the side of the ugly blue Ford van. It was time to get out.

I rolled out on the pavement in front of the theater, and it was in that moment I was struck by a sight I’ll never forget – a school bus full of kids staring straight at me, watching my every move. Panic.

I knew those young kids were judging me. This wasn’t the experience of the Shepherd Center, where everyone knew about spinal cord injury. I was outside my element, and I was, quite literally, paralyzed with anxiety. I didn’t want to go see a movie anymore. In that moment, I wanted to go home.

“Just breathe. Look away. Don’t worry about it. Let it go,” I told myself.

Knowing going home wasn’t an option (my friends would have kicked my butt for cowering down to some kids), I tried to act as nothing happened, and we continued to see Superman with most of my initial excitement. The movie was lovely, a trip out with my friends was fun, but those daunting sets of eyeballs – and the following fear of insecurity as a person with disability – was blazed into my memory forever.

Years later, I look back on that moment – a still young, newly injured Ben – and I’m proud of how far I’ve come. In fact, I often share the story of “those damn kids” when I speak to audiences about my journey after spinal cord injury, and the pursuit of confidence, and regaining my sense of humor and purpose.

At that time in my life, I was insecure. I still am to some degree, but I’ve become very proud of who I am.

If those kids were looking at me today, I’d say “hey, what’s up y’all” and wouldn’t think twice about it.

I was once very insecure about my disability. After 15 years, graduating college, working a full-time job, finding my advocacy voice as a National Ambassador for Easterseals, traveling across the country to advocate for accessible airlines, and even running a political campaign and getting elected – I’m damn proud. And yes, that very much includes my disability.

As we celebrate Disability Pride month, it’s more important than ever to discover what makes you proud of who you are, and even more importantly, the journey that got you to where you are today.

My Disability Pride story starts with a simple trip to the movie theater, how about yours?

The Chicago U.S. Attorney’s office announced it was suing the Chicago Cubs over the recent years-long renovation of Wrigley Field to force them to comply with the Americans with Disabilities Act. Hearing that news got me thinking about what happened at Wrigley Field the first and only time I ever went to a Cubs game with my Seeing Eye dog. When we got there, the man taking tickets said he didn’t know if the dog was allowed. I pointed to her harness, told him she was a Seeing Eye dog, and he sent me to a different gate. The man at the second gate wasn’t sure, either. He’d have to get a supervisor to come and check us out.

Turns out a week earlier someone had brought their untrained puppy to Wrigley, claiming the dog was a service dog. The dog misbehaved, fans sitting nearby complained, and after that, the people working the gates were told to scrutinize anyone coming in with a service dog.

So my Seeing Eye dog and I stood there and waited for the guy at the second gate to summon a supervisor to come and “approve” us.

We didn’t have to wait long, but we sure stuck out just standing there while all the other ticket holders breezed by and waltzed right into the ballpark, no problem. It just didn’t seem fair somehow.

When the supervisor arrived, she saw my dog’s harness and immediately gave us the thumbs up. She even guided us to our seats. We enjoyed the game. I never considered suing, but that’s only because mine was an easy fix. I did get in, I had a seat, my Seeing Eye dog could guide me in and out of the restrooms when I needed to go, I could reach the paper towel dispenser after washing my hands there, and the cashiers could see me when I walked up to the counter to order food.

For people with physical disabilities – those using wheelchairs, scooters or crutches, for example – the fixes are not that easy. The Fed’s suit against the Cubs claims Countertops in restrooms and at concession stands at Wrigley are too high for people using wheelchairs to reach paper towels or order food. An article in the Chicago Sun-Times reports the feds’ investigation of Wrigley’s ADA compliance became public in December 2019, when lawyers for the team filed a letter as part of a lawsuit brought by David Cerda, a Cubs fan with Duchenne muscular dystrophy who uses a wheelchair. His father, David Alberto Cerda, is also his attorney.

The Cubs have spent a lot of time and money renovating Wrigley Field these past few years, but an article in Sports Illustrated says the 2019 lawsuit states that while the Cubs “significantly enhanced the gameday experience for many fans, particularly those able to take advantage of premium clubs and other luxury accommodations, the same can not be said for fans with disabilities.” You can check out the entire 19-page lawsuit here — the suit also highlights how the Cubs failed to remove architectural barriers where they could, and instead they placed wheelchair seating in the last row of general admission.

I haven’t studied ADA regulations to know if relegating people using wheelchairs to the last row in a stadium is an infraction, but I do know this: Cub fans stand up and cheer a lot during games. If you are seated in a wheelchair in the last row with all those people standing in front of you, your sightlines will be terrible –you’re bound to miss a lot of the action on the field.

The Chicago Sun-Times article quotes the team as saying they are “disappointed in the lawsuit” and hoped the suit could be “resolved amicably.” The team also said it would “defend Wrigley Field” and defend their position that Wrigley meets accessibility requirements for fans.

I’m eager to see how it all, ahem, plays out.