To the Bathroom Attendant Who Accused Me of Not Having a Disability

Dear Theater Bathroom Attendant,

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

Last weekend, I made the decision to drive to downtown Minneapolis with the hope of buying a rush ticket to see the Broadway musical “Kinky Boots.” I’d been longing to see it. If this had been six 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, spasms and the pain associated with these symptoms, it takes a lot out of me to be away from home for a couple of hours. But due to the theater’s requirement of needing to be in line for rush tickets two to three hours before the show starts, it required me to think about the physical consequences of a seven-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. And then I met you.

Getting to the theater at 1:45 p.m., I made my way through the crowded lobby to the bathroom for people with disabilities.

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

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

So I did. 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 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 two and a half years?”

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

But it wasn’t OK. You’d 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 musical.

During intermission, I took the time to write a note to you because I really wanted you to learn a lesson from our encounter. I even wrote my name and phone number on it so 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 who said, “I spoke with her,” as she shoved my note in her pocket. I didn’t receive an apology from her or from you even though I went the extra mile to communicate with you.

By now, you probably know what happened once I left the theater. After writing a letter to the theater’s administrative staff, I also posted it on Facebook in a dystonia 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’d already gotten a phone call from a person in charge. He apologized over and over again, explained you were a volunteer and said they planned to fire you. He also mentioned it was an eye-opening experience for their organization, and 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 the dystonia support group to speak to the volunteers and employees. He loved the idea and asked her to share her story.

What you most likely don’t know is this. I wrote a letter on your behalf to make sure you had a chance to learn how to treat others with empathy and compassion. I hoped you would get to hear my friend speak about her disability at the upcoming training session. 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 had a chance to learn from this. But perhaps you’ve caused similar problems in the past and this was the final straw.

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

I truly hope you think about what happened between us and make positive changes on the way you interact with others. Our encounter certainly had an impact on my life. I hope it’s had one on yours, too, and that our world is a better place because of it.

Sincerely,

Michelle Shaw

Follow this journey at Chronic Hope.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.