I held this article for two weeks hoping the Cincinnati Enquirer would post the Op-ed I submitted. I haven’t received a response. So here’s my full story of the terrible, discriminatory treatment I received at Paul Brown Stadium; twice.
When you’ve spent over a decade to an entire lifetime rooting for a sports team or otherwise supporting an organization you believe in with your whole heart, it’s difficult to believe they wouldn’t be just as loyal and supportive of you. When you wear a team’s colors and post about their victories and losses on social media, it’s that much harder to speak out when you realize the organization has been practicing poorly concealed discriminatory practices against people with invisible illness, people who happen to be just like you. My husband and I wish more than anything that it wasn’t true. We wish that our beloved Bengals properly trained and ensured their employees treated everyone coming into the stadium was treated with dignity and respect regardless of their ability, but we would be lying if we did, as we experienced firsthand just what happens when you request accommodation at Paul Brown Stadium; twice.
Time Honored Traditions
My husband grew up a Bengals fan, so young when he caught football fever he spent years in abject misery being sent to bed at half time during some of Football’s most important games of the late sixties and early seventies. No matter how bad the Bengals’ record ever got, he remained a loyal fan. The whole of his life, it seems his beloved mistress has always been held at arm’s length; just as his own football career was sidelined by a season ending injury the first game of his senior year of high school, ending all of his college prospects, he’s spent most of his life watching not even from the sidelines, but from his TV at home.
Football has always been something I’ve very much enjoyed sharing with my husband. I enjoyed football before we met, but it was my husband who taught me to truly appreciate its complexities and brought me into the Who Dey fold. While I was a Cincinnati native, I came to associate the team more with my drunken step-father than hometown pride and I picked another team to root for. David changed all that for me. Football is one of the foundations of our relationship, one of the essential things he brought with him into our relationship that changed me and while the feminist in me sometimes cringes over some of the NFL’s practices and policies, I have no regrets about the many hours of football over which we’ve bonded and sometimes commiserated.
Season Tickets Cost Us More Than Money
This is why it’s so heartbreaking to me to have to say that our team, the Cincinnati Bengals, really let us down with their discriminatory practices. My deepest desire has always been to buy my husband season tickets so he could enjoy the game up close and personal, be a real part of Who Dey nation. It would have been easy in the early days of our marriage, when we were a dual income family. Before disability came and claimed our ability to be a two income family with good paying jobs. But once I was unable to work in 2008, money has been a constant struggle. This year, buying tickets wasn’t going to be any easier financially, but the symptoms of my conditions had been fairly good and I felt like it was best opportunity I would ever get to manage the games physically. When they called and offered us a tour, I took them up on it.
Of course we couldn’t afford the expensive tickets. We had to do the economy tickets which pretty much come with zero perks and are located in the corner. We didn’t care. We were thrilled to be in attendance to see our Bengals play for each and every home game of the season, even if it was from the corner. We were absolutely elated each time we arrived at the stadium. I was thrilled to be able to make it to my seat on my own steam, unlike in 2016, when I was so weak and symptomatic I had to do the only game we could afford in my wheelchair.
Only things weren’t working out quite as we’d hoped. I began having breathing issues every time I engaged in any sort of strenuous activity and walking the ramps and stairs of the stadium left me bent over gasping for air every hundred feet or so unless I moved at a crawl. By the third home game against the Steelers, I was too sick to attend at all. I was in a flare up. When I returned on the fourth home game opposing the Buccaneers, I was already struggling by the time we made it from the parking lot to the stadium. I didn’t want to risk triggering another flare, so I headed for the elevators.
Where Things Went Wrong
I was not prepared for what awaited me. The elevator lobbies at Paul Brown Stadium are encased in glass on each floor. The doors for entry are cordoned off with rope. On each floor, these cordoned off doors are guarded by two people. We noticed the two taking tickets, so we pulled ours out and as I handed mine to the man at the door, I said “I’m disabled. I need to take the elevator.”
The man proceeded to look at our tickets and try to direct us to the ramps. I reiterated that I was disabled and needed to take the elevator. He then pursed his lips as if he was trying not to laugh, looked me up and down inspecting me for any visible signs of disability and rolled his eyes, and once I began to try to explain further in a firm voice, he finally acquiesced by placing a wristband on my arm and allowing me to pass.
There we were, our first year ever with season tickets and we were being treated like criminals because I committed the crime of looking whole but actually being disabled. I was livid, not to mention completely flabbergasted. This was exactly the kind of treatment I had always heard about whispered in the chronic illness community and feared since the day I fell ill. Don’t get me wrong, I’ve been victim to plenty of side-eye and backhanded compliments that were just too clever to completely call out as ableist, but this was my first experience of being so openly disdained. Was this person looking at me like a sub-human piece of shit because he didn’t believe I was really ill or because he believed I wasn’t worthy of breathing his oxygen?
It bothered me the entire game. I sat in my seat feeling dejected. “I don’t think I’m coming back,” I told my husband. “I just can’t believe they treated me that way. I feel so humiliated, so degraded.”
Over the course of the next two weeks, I discovered during a stress test that my heart was the culprit for the distress I was experiencing during exertion and that until I could get in with a cardiologist to do an exploratory catheterization, I was to eschew all strenuous activity. This meant no climbing stairs or ramps.
There was a great debate between my husband and I about whether or not I should finish out the season. Not only would I have to face the possibility of more humiliating treatment at the elevators, I would have to be dropped off at the curb to wait out in the cold while my husband parked and walked back blocks away. The stadium simply wasn’t set up to handle the walking disabled well, as the only side that’s completely free of ramps and stairs is blocked off to vehicles.
We discussed changing our tickets to disabled access and resorting to using my wheelchair, but with having Ehlers Danlos Syndrome, a collagen disorder affecting the joints, and a generic chair I bought for $50 from a junk dealer, it is not a place I enjoy spending my time. I usually end up with crushing leg and hip pain after spending more than twenty minutes in it. Besides, I’d rather walk whenever possible, just like every other invisible illness spoonie I know.
Part of me hoped that the incident at the elevators was an isolated incident. Maybe the guy was just having a really bad day or had just dealt with something I was completely unaware of that had caused him to react poorly to me. I wanted to give him and the organization I loved the benefit of the doubt. Even if that wasn’t the case, I reasoned that if he didn’t understand things like “rare genetic disorder” or “Ehlers-Danlos Syndrome” perhaps he would understand “heart condition.” Mostly I was hoping he would remember me and just let me pass, or someone who actually understood that not all disabilities are visible would be there.
No such luck, on all accounts. Once again arriving at the elevators we received the exact same treatment as we had before the bye week.
I had been looking forward to the game against the Saints more than almost any other game of the season, but I could barely tell you what was happening on field. I was so upset at being treated this way yet again that I could barely even think straight. By the half, my husband admitted he was having the same problem and that he wanted to leave. I was more than happy to oblige. We made our way out of the stadium, knowing it would be the last time we would make the trip.
I have no idea what it is that the Bengals hope to accomplish by their handling of the elevators. They appear to be reserved for their most affluent patrons, their employees and people with visible physical disabilities. Clearly, if you have an invisible disability, they attempt to intimidate you away from using the elevators, something which is unequivocally illegal by local and federal law alike. It is not the responsibility of any organization to determine whether or not someone is truly disabled when seeking accommodation. It is their job to provide accommodation when it is requested by an self-identifying disabled person, period. The vast majority of disabilities are invisible.
Putting it into Perspective
Invisible disabilities include everything from rare genetic collagen disorders and heart conditions like mine, to connective tissue disorders like lupus or rheumatoid arthritis, to neurological conditions like multiple sclerosis to conditions like chronic kidney disease or gastroparesis. Some of these conditions have nothing to do with how your limbs work or your mobility, but they come with their own unique set of challenges to mobility, from extreme fatigue to risking bodily harm from increased heart rate, to a risk of falling or fainting which makes traversing stairs and ramps unwise if not impossible.
Just because someone appears whole does not make them so. When an alternator stops working properly on a car, it doesn’t change its appearance. It might even work right some of the time. You might not even know there’s anything wrong with it. It’s much the same with invisible illness. You don’t know anything is wrong until you look under the hood, so to speak. Appearances can be deceptive. Disability does not discriminate. It knows nothing of age, sex, nationality, race, creed or sexuality. It cares not if you tithe weekly to your church, vote red or blue, love your children or eat vegan.
The single most important thing to remember about invisible illness; it’s never the place of any person or organization to question or judge whether or not a person is disabled. Not only is it illegal, it’s senseless, wrong and emotionally damaging to the disabled person receiving such treatment.
Imagine questioning your own sanity for over 19 years while your health slowly falls apart and you grow sicker and sicker. Doctors come and go, scratching their heads and sending you on to someone else. You live in endless suffering and torment. Your head feels like it’s going to be ripped apart, your spine is on fire, your vomit for days or sometimes even weeks and your whole body aches. Your joints dislocate with barely a movement and you can’t even bear the smell of something as simple as coffee or a hint of light. You’re locked behind your bedroom door immersed in darkness as the pain and symptoms eat away your very will to live as friends and family trickle away one by one because they never really believed you were ill or simply got tired of waiting for you to get better. While all of this goes on, you see more doctors and even more. While some clearly believe you, others label you “drug seeker” or try to send you to a psychiatrist, convinced it’s all in your heard.
Imagine, after 19 years finally finding the right doctors with the right knowledge and tests, a proper diagnosis! Only now you realize there are no cures or even medications for your condition. This is just a tiny bit of my story and it is in no way unique. The average time of diagnosis for patients like me is approximately twelve years. Now imagine enduring all this disbelief and denial and being subjected to this treatment at the elevators of Paul Brown Stadium, 19 years of this treatment at your back, guards sneering in your face.
If you want to take the measure of a society, just look at how they treat their most vulnerable members. The Bengals fail this simple litmus test. They lose nothing by accommodating those with invisible disabilities with dignity and respect. By attempting to bar them from using the elevators or attempting to intimidate them out of asking to use the elevators at Paul Brown Stadium, they are breaking the law.
Whether what I experienced is based on current policy or just the individual practices of one employee, this never should have been an ongoing situation and in other organizations, it absolutely would not be, because proper employee training can easily prevent such situations. It also took place with several other employees watching both times and no doubt happens repeatedly every game. This to me says this behavior is openly accepted and therefore employer sanctioned.
Management’s Response to My Complaint
When I sent a letter to the organization explaining what occurred on both occasions and asked them to take measures to address the situation on behalf of all disabled visitors, I was told by my account executive that there is training in place and that he was very puzzled by this report. He assured me he spoke to the proper managers and they would take care of it through further training. Then he offered me a special elevator pass to ensure I wouldn’t be questioned for the remainder of the season if I would take my tickets off the market. This was the only solution offered.
Having worked in marketing and sales, I’m quite familiar with the well crafted apology letter to assuage an irate, offended customer. This one was quite well written, but it had one major, glaring flaw which makes me certain it’s nothing but lip service: If this isn’t an organization wide problem and it’s going to be addressed in training right away, then why would I need a special pass to ensure I’m not going to be treated like a sub-human piece of shit for a third time? More importantly, how would this special pass help anyone but me?
I may be physically disabled. I may even suffer from cognitive impairment due to my illness, but for the most part, my common sense still works pretty well. I’m not looking for individualized special treatment. I want revolution. Nothing short of fixing the problem for EVERYONE will do.
Until then, a Bengals fan I will be no more.