Waiting Room Wars

It never started with shouting, even though that was how this confrontation devolved. The entrance to the office was far from the check-in desk, and awkward eye contact would be established before a word could be spoken. When I had to sit at check-in, I hoped a furtive smile would convey that what was to come was neither my doing nor my idea. Conversations could become confrontations when elderly patients were told that the only way to update their information or become patients of the practice was by entering it into the iPads provided by the medical office. I would feel a pit form in my stomach when I saw someone come in with a folder, nearly bursting with what could only be physical medical records they hoped could be put into their chart and alleviate the need to interface with technology. There was no nice way to say that the doctor wasn’t going to leaf through everything they had brought.

The problems continued when patients tried to use the iPad: the tip of their finger had to press the button just so, or the iPad wouldn’t register what they were trying to enter. For the older demographic, many of whom struggled with hand osteoarthritis, the iPads were an exercise in frustration.  I would watch their facial expressions start with placid acceptance or a shadow of skepticism. From my seat behind the desk, I would see these emotions fade to frustration and sometimes give way to something greater.

Within five to ten minutes, the iPad would be returned to the desk, with the patient, or, if we were lucky, their companion, slightly annoyed to completely rage-filled that they had not been able to fill out the forms and that this was the only way to do so. I didn’t like this system and didn’t understand why it was the only way to collect patient data in the office. On this particular day, I was at my favorite spot, which was not the check-in desk. The dance I described above had already taken place. It was a busy day, and this patient came alone; we had reached an impasse. My coworker had disappeared into the back to see if he could be seen with only part of the information completed. I had a bad feeling when she disappeared because the nurse she had gone to for help liked everything done by the book and was not patient.

Eventually, the nurse appeared, and I could tell she wasn’t having the best day. She was normally a good listener and would at least try to find a compromise. She’d had so much plastic surgery done that I could never tell by her facial expressions if she was happy or sad, but I could tell by her voice. She would have a softer cadence when she was having a good day and felt she had time to be patient. Today, it was in a higher octave, so she was speaking fast and loudly.

He had to finish the forms, and the patient was starting to argue with her. This was not a nurse you would win an argument with. Eventually, it was mentioned that the appointment might have to be canceled, and I could have sworn the man looked like smoke was about to start coming out of his ears. I had heard enough, so, through gritted teeth, I asked the man to please take his seat in the waiting room again and said I would assist him with the forms. The line of other patients I had been attending to had thankfully filed out after being assisted. I turned to the nurse and assured her that the forms would be filled out with my assistance. Everyone returned to a calm enough state of being that the raised voices went back to normal.

Long after the patient had left, I sat at my desk, seething with rage. Why didn’t we have a more accessible way for patients to fill out their information? Why didn’t we have weighted styluses? Why was the one system that we had not designed to be universally accessible for our entire patient demographic? It took a while to realize that I was truly angry about how disability and the healthcare system often collide.

Doorways aren’t always wide enough to comfortably fit wheelchairs. Physicians I see often don’t seem to understand how my autism is related to any myriad of issues they might be treating me for. That patient had gotten angry at a system that wasn’t designed to work for him, and I’d felt the same way on so many occasions. I was left with the question of why? It doesn’t have to be this way. Some adjustments and tools could have been utilized in that instance long before he even got upset. As I’ve continued my journey into disability advocacy and my healthcare career, I keep looking for solutions like I did that day in the office.

I’ve started going to conferences by myself and researching advocacy organizations that go down to my state capital, but it never feels like enough. The more I push into volunteering and educating myself, the more I want to do. I pursue these goals in my free time, and in my professional life I have a job that, while rewarding, isn’t aligned with advocacy. I haven’t found a way yet, but I will push for the change I want to see for the disability community in healthcare and in the world at large. Even for those who don’t participate in formal advocacy, I think we all have an important part to play in pushing towards a more accessible and inclusive world. As I’ve been studying for an accessibility exam, I’ve learned that anything we interact with regularly is also something someone with a disability has to accomplish to be a part of society. So I keep asking: how can I make the everyday more accessible?