A Showstopping Performance

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Dear Theater Bathroom Attendant,

With all of the changes that have taken place in your life throughout the past week, I’m positive you remember me. If not, let me refresh your memory.

Last weekend I made the decision to transport myself downtown Minneapolis with the hope of buying a rush ticket to see the touring Broadway hit musical “Kinky Boots.” After seeing the movie and being immersed in all of the publicity on recent travels to New York City, I’ve been longing to see it. If this had been 6 years ago, before I was diagnosed with a neurological movement disorder, taking myself out for a day on the town wouldn’t have been a big deal. But last Saturday, the decision to go was huge! Let me tell you why.

I have Cervical Dystonia. Due to the pulling of my neck, chronic headaches, my spasms and all the pain associated with these symptoms, it takes a lot out of me to be gone from home for a couple of hours. But due to the rush tickets’ requirement of needing to be in line for tickets 2-3 hours before the show even starts, that requires me to think about the physical consequences of a 7 hour day away from my “comfort zone”. Driving 15 minutes in my car is painful, but I did it, and I miraculously found a parking spot right across the street from the theater. Everything seemed to be going my way, in spite of my pain. Great parking! I managed to be one of the lucky few who got a ticket for the show! I met a really nice woman at the bus stop who just happens to live in my neighborhood! I had a wonderful brunch at one of my favorite restaurants! And then I met you.

Getting to the theater at 1:45, I made my way through the crowded lobby to the bathroom for people with disabilities. I was wearing my neck pillow by that point because, after 4 hours of not being in a stable position, it was increasingly difficult to hold my head up on its own. You see, one of the effects of Cervical Dystonia is that my neck isn’t strong enough to hold my head up, which affects everything I do (and can’t do) on a daily basis.

“Is there anyone using the bathroom?” I asked, having to interrupt your conversation with the woman standing beside you.

You looked at me and looked at me again before you answered, “Someone’s in there. You can stand there and wait.”

So I did. With my head against the wall, I finally had something to help me hold my head up. But why did you keep gazing at me? The woman next to you repeatedly tried to regain your attention, but you kept gawking at me. Suspiciously. And I was about to find out why. After I took my turn in the bathroom, I walked out the door to find you blocking my exit. You threaded your fingers through mine, making me think “Maybe she’s going to say something compassionate.” I’m guessing it isn’t every day that you see a 44 year-old woman use the bathroom for people with disabilities. However, you stared at me with my hands locked in yours, and exclaimed, “Don’t you ever try that crap on anyone else, Sweetheart!”

I was stunned. What in the world were you talking about? Soon enough, I realized you could only mean one thing.

“Are you accusing me of not having a disability?” Still in shock, yet fully aware of this unexpected injustice, my eyes met yours. “I have Cervical Dystonia, and there is no physical way I can stand in the regular bathroom line. In fact, I can’t even hold my head up when I go to the bathroom. Do you need me to bring a doctor’s note? Or maybe my Long-Term Disability pay stubs I get once a month because I haven’t been able to work in 2 ½ years?”

Letting go of my hands, you said, “No, no. That’s okay.”

But it wasn’t okay. You had just ruined my entire day out. No matter what happened next, I knew there was no way I was going to be able to enjoy the play. Fortunately, I immediately saw a woman wearing an “Event Manager” nametag and told her what happened; she and her colleague both shook their heads in disbelief. “What? That’s not right! We don’t ask questions here. If that’s the bathroom someone needs, then that’s the bathroom you use! We don’t judge that! I’ll have a talk with her.”

At no point did either of them apologize to me for your behavior, nor did either of them ask if there was anything they could do to make up for your discriminatory acts. I took the elevator up to my seat, but I was too upset to be present for this amazing musical. Why? Because of you! How can you feel good about yourself when you treat others with such contempt? Do you know how many people live with chronic illnesses every day?

I’m guessing you are around 65 years old. Is it possible that you think people have to be in a wheelchair, hold a cane, or use a walker in order to have a disability? I hate those disability signs because they teach misconceptions to those who don’t know any better, since they only contain a picture of a wheelchair. People who are in wheelchairs for whatever reason represent just one piece of those of us who live with disabilities. Or is it that you discriminated against me because I’m younger? Why weren’t you scrutinizing the man waiting behind me? Like me, he had no assisted walking devices. However, he was at least 25 years older than me. No matter what, your behavior was very hurtful and discriminatory.

Did you ever get my note? During intermission, I took the time to write you a note because I really wanted you to learn a lesson from our encounter. It went something like this.

“I’m the one you called a liar earlier when I stopped to use the bathroom, and I have Cervical Dystonia. Please do some research online about this disorder that most people have never heard of. I am in pain all of the time! If you continue to judge people without knowing the facts, it may cost you your job at the very least.”

I even wrote my name and phone number so that you could call me if you had any questions about my disability. Just because you can’t see someone’s disability doesn’t mean it doesn’t exist. That was the most important lesson I wanted you to learn. And I was willing to have a conversation with you about it.

At the end of the show, which I never really did get to enjoy, I gave my note to your supervisor.  “I spoke with her” was all she said as she shoved my note to you in her pocket. Again, no apologies from her. No apologies from you, while I went the extra mile to communicate with you, someone who had treated me with such a genuine lack of respect . Nobody deserves that.

By now, you probably know what happened once I left the theater. Having written a letter to the theater’s administrative staff, I also posted it on Facebook on our Dystonia Minnesota Support Group Page. I asked both of my parents and the people from our Dystonia community to write to the administration regarding your behavior. And guess what? They did!

By Monday afternoon, I had already gotten a phone call from the person in charge. He immediately began our conversation by apologizing, over and over and over again. At that time, I was told you were not a paid staff member. In fact, you were a volunteer who had been working with them for the past few years, but after the way you bullied me, they were going to fire you. It was an eye-opening experience for their organization, and he said they definitely needed to do an even better job with their sensitivity training. At that point, I suggested he ask one of the women in our Dystonia group to speak to the volunteers and employees. I had heard her speak before, and I knew they would respond to her presentation. Having been diagnosed at the young age of 21, she has lived with Dystonia for many years, so she can definitely share what it’s like to be young and have an “invisible” disability. In fact, she was one of the people who wrote a letter on my behalf. The great news is that he loved the idea and asked her to share her story. Thankfully, she said yes! In fact, the timing of your discrimination towards me couldn’t have been better since the sensitivity training is next week.

But our phone conversation wasn’t over yet. In addition, the theater is going to give me two tickets to attend an upcoming show of my choice. And since I had asked about Disability Seating, a few of the administrative staff did a tour of the theater so they could find the best seating possibilities for people with Cervical Dystonia. You see, sitting in one of the normal seats is very painful because the seat back isn’t high enough for me to rest my head against. It goes back to not being able to hold my head up on my own. So now I know for future shows, as do all the people I connect with in my Dystonia support group, that we need to ask for Accessibility Seating whenever we go to a show. What a relief! And I mean that in a very literal sense. As our discussion concluded, he apologized again and thanked me for helping them come up with a sensitivity training experience that will go above and beyond anything they’ve ever offered before.  I was so grateful that this organization responded to my concerns in the way they did.  It shows they truly do care how their customers are treated by their staff.  Isn’t it amazing how the behavior of just one person can make or break someone else’s day?

What you most likely don’t know is this. I wrote a letter on your behalf to make sure they felt like you had been given several chances to learn how to treat others with empathy and compassion throughout your time there. Based on the phone conversation I had with the administrative staff, I inferred that you had. However, I hoped you would get to hear my friend speak about her disability at the upcoming training. I also hoped you could talk with her and your supervisor and engage in a meaningful dialogue afterwards. If you still didn’t “get it” based on her presentation and this discussion, then they could fire you. It was important to me that you have a chance to learn from this. Perhaps, you’ve caused similar problems in the past, and this was the final straw.

However, if you were a good volunteer and hadn’t gotten a second chance, I didn’t want you leaving one volunteer job for another. Other innocent people like myself shouldn’t be subjected to you making the same mistakes somewhere else, when all we want is to go out and enjoy a show. To take a break from focusing on the excruciating symptoms of our disabilities for at least 2 ½ hours out of our day. To be accepted for who we are and not judged by someone who has no idea what our bodies are experiencing at any given moment. Our only crime is being unlucky enough to get stuck with an incurable neurological movement disorder, one that I will live with for the rest of my life. Since that’s my life now, no one has the right to treat me as a lesser being. No one has the right to speak to me with such loathing and disrespect, as you did! And no one, whether they are disabled or not, deserves to be treated that way, by you or anyone else!

Since the theater made their decision to fire you without involving you in the upcoming sensitivity training, I sincerely hope you initiate educating yourself about people who live with “hidden” disabilities like mine every day.   While your actions and words immediately had a negative impact on me, I chose to advocate for myself and others. The remaining volunteers will have a meaningful learning experience that will hopefully have a positive impact on everyone whom they come into contact with, whether it be at the theater or in their daily lives. My hope is that they will choose to educate others so that more and more people develop an understanding of what Cervical Dystonia is and how to act empathetically towards us.

I truly hope you become one of those people too, someone who is thoughtful and caring. In order to do this, you will need to practice being open-minded, leaving your pre-disposed assumptions at the door. It may seem odd that I spoke up for you after the way you treated me. But I also don’t want to assume anything. Perhaps, you’ve only known one way to communicate with people, and you’ve done it all your life. I was hoping my suggestion to invite you to one final training would teach you another way to act, one filled with empathy. Since you won’t be getting that chance, I truly hope you consider what happened between us, and make positive changes to the way you interact with others. It’s ironic this incident would take place at a play where one of the main obstacles is discrimination. As Lola said to the man who constantly judged her, “Accept someone for who they are.” I challenge you to do the same, with everyone you meet. My life has certainly been impacted by our encounter. I hope yours has too and that our world is a better place because of it.

Sincerely,
Michelle Shaw

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4 thoughts on “A Showstopping Performance

  1. Wow, this is certainly a showstopping post! So empowering and educational and truly fascinating. There are so many lessons to be learned from this post. I applaud you for advocating for yourself the way you did and providing opportunities for others to learn about this condition. You can always count on me, too, for writing notes, letters, and whatever was needed on your behalf.

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  2. Had a colleague who had MS starting at 18 and was young and beautiful. She often had people challenge her when she took handicapped parking spots or used facilities for the disabled. She taught a lot of people to look with new eyes.

    She acknowledged that the same people who judged and attempted to shame her were trying to advocate for the disabled by keeping what they thought was a non disabled person from using space or facilities reserved for other. That perspective helped her with these encounters.

    I have had this happen and do explain to the person that not all disabilities can be clearly seen. Once I had it happen from another person with a disability. She was asserting herself without realizing that she was judging unfairly. We left the interaction with a smile and she left thinking about others differently.

    Sharing and teaching spreads the good.

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    1. I’m so glad you advocated for yourself, which in turn affects many others. There obviously needs to be more education about what a disability is. That’s why those signs drive me crazy because they only show a wheelchair. There has to be another stick figure we can come up with that applies to all of us who have one. What could it be?

      Like

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