It is time to own up to it. I have a one track mind. No, it is not in the gutter. And I don’t see issues in the world as black or white, good or bad, right or wrong.
I see the world as accessible or inaccessible.
Maybe it’s from having a lifelong disability and having been denied access to one too many places. But I can’t help having this worldview any more than I can control cringing when I hear the word “handicapped”. It is just an integral part of who I am.
Fondly I remember a lazy afternoon back in college, when a good friend of mine was visiting and showing me pictures from her recent trip to Europe. The scenes included the Eiffel Tower and several cathedrals, as well as rolling hills and rustic farm houses. All of the pictures were pretty, but my biggest reaction came when I saw a pose of her at the airport, and in the background on a sign was the international symbol of accessibility. “Cool,” I said, with a burst of excitement, “I guess that symbol really is universal!!”
She rolled her eyes and smiled big. “Promise me you’ll never change.” She said.
A few weeks ago I was supposed to go to a peer support training in my college town. The location was about an hour away, and I rarely get out of my routine. Therefore James, my caregiver who was going to drive and accompany me, suggested we make a day of it. When we researched restaurants in nearby places, one in particular stood out to me. From the description, it sounded enticing. With a ‘50’s feel, it advertised huge burgers topped with gooey cheese, crunchy breaded onion rings and milk shakes concocted with real ice cream. It was a drive in.
“I wonder if it’s accessible.” James said out loud.
He has been working for me for several months and knows my routine and limitations pretty well. “What?” I responded quickly. I was confused. “If it is a drive in, it doesn’t matter if it is accessible, we don’t have to get out of the car.”
His spontaneous, heartfelt laughter caught me off guard. Although he has a tremendous sense of humor, James is pretty reserved. In our months of working together, I have only heard him laugh out laugh out loud a couple of times before.
“I was wondering if the drive in was accessible from the highway that we will be on,” he said. He continued to chuckle.
“Oh, well that is very different.” I grinned sheepishly. It was my best Gilda Radner impression from Saturday Night Live.
James rolled his eyes and smiled big. “Promise me you will never change, ” he said.
A few days later our plans came to a screeching halt. A bowel obstruction coupled with a severe urinary tract infection landed me in the emergency room. Several hours of invasive testing later, it was determined that I needed to be admitted for a while. I required mega doses of antibiotics and lots of IV fluids in order for both my pee and my belly to clear up. I agreed, but I grumbled.
The hospital is probably the place that I hate the most. Given that I can’t drive, can’t put on my own shoes and can’t safely deal with boiling water, I don’t have a whole lot of power in my life on average days. Lying flat on my back in the hospital, most of the power that I routinely do have gets taken away. While I am there, someone else ties the gown I wear, distributes my medication, and grants me permission to go to the bathroom. In a hospital room, I am hit between the eyes with the harsh reality of exactly how dependent I really am.
Determined to make the best of it, I tried to look on the bright side. I could watch lots of movies. Canceling cable a few months ago meant that I don’t do that much at home. I also could have all the Spite and chicken broth that my heart desired. Sometimes you have got to look for the rainbow through the clouds.
After a couple of days, I was feeling better, and Kaylin came to visit on her own time. She is another one of my caregivers, and the depth of her compassion is matched only by the strength of her support. A few minutes after her arrival, she suggested that we go for a walk through the halls. Since the walls in my room had gotten a bit claustrophobic, I thought it was a great idea.
The hospital had recently undergone a multimillion dollar renovation and I had not seen all the changes. The signs in several hallways pointed to a roof top patio. That sounded good. I looked forward to getting outside, so we followed the signs where they directed, and found a flight of stairs.
We stopped short. Wait a minute. How could that be? There HAS to be another way out there, right? Renovations were recent.
When I asked a nurse, she looked embarrassed. “I’m so sorry,” she said sincerely. “The only entrance to that roof top patio is up those stairs.”
The thoughts in my head went haywire. Are they KIDDING? The Americans with Disabilities Act was signed into law more than 23 years ago. How could it be that a part of the hospital was inaccessible? It didn’t make sense. Besides, I reasoned, many people might need wheelchair access in a hospital when they wouldn’t need out it in the community. Women who have just given birth or people recovering from concussions and such might need a wheelchair for a few days and then be fine. I didn’t think that my logic was anything special. Couldn’t the people who drew up the blueprints for the renovation come to the same conclusion?
I stared at the steps. I could only look at the roof top patio through a window. I let out a heavy sigh and went back to my room.
A few days later I was released from the hospital with the suggestion that I take it slow as I completed my recovery at home. So, l snuggled with my service dog and enjoyed the satisfaction that comes with eating solid food. Eventually, I plan to write the CEO of the hospital and ask him why the roof top patio is blocked by a flight of stairs. I am hoping that he will be willing to meet with me and discuss the matter.
I have never met him before. Who knows? Maybe he is attractive. I am single. But even if that is the case, I probably won’t notice.
I have a one track mind.