The Unexpected Guest
So I went with Hannah to the hospital today. She had to have a routine procedure done, and needed someone to accompany her. I really haven’t spent too much time in hospitals, and when I have, I’ve been accompanied by a swarm of family members. So I’m never the one in charge, or the one making decisions. I’m never the adult in the situation, and I’m never by myself.
Today it was just the two of us, walking to the hospital together way too early in the morning. Neither of us had eaten. She wasn’t allowed to eat, and I’d decided not to have breakfast as a gesture of solidarity. If it was going to be just us, after all, it would have to be us all the way.
We arrived, went directly to where we were supposed to go, and signed in. Hannah is marvelous at this. She’s a veteran. She’s spent a lot of time in hospitals and at doctors’ appointments. Nothing seems to phase her.
The milleau of the hospital- clean and clinical and icily formal- was less familiar to me. I felt a little disoriented.
We sat in the waiting room and didn’t talk much. Hannah looked at Facebook on her phone. We were both exhausted, having only slept six hours.
“Are you nervous?” I asked her.
“I’m always nervous until I see what the situation is,” said Hannah. “How I’ll transfer from my chair to the bed. Whether they’ll have a lift available. When I was talking to the doctor last week, he said they’d have one ready. But you can never tell.”
Half an hour passed. An hour. We had only arrived fifteen minutes early. After an hour and fifteen minutes, a nurse approached us.
“Date of birth?”
“March 21st 1986.”
“Just follow the red signs.”
We walked through a door and down a corridor.
“We’re probably heading to another waiting room,” said Hannah.
We arrived in a pre-op/post-op area lined with hospital beds. A nurse walked up to us. She took one look at Hannah and seemed nervous.
“Can I help you?” she asked.
“I’m Hannah Schuyler.”
“Oh, of course. Date of birth?”
“March 21st 1986.”
“How are we, uh… How are we going to transfer you?” the nurse asked. “From your chair to the bed, I mean?”
“There’s supposed to be a Hoyer lift,” said Hannah.
“A Hoyer lift? Okay, let me check.”
The nurse left and walked around the corner. We heard her talking to other people in a low, anxious tone.
We assessed the nearest hospital bed.
“Does that look like it’ll be okay?” I asked.
“It’s a bit low to the ground,” said Hannah.
Five minutes passed. Then ten. The nurse returned.
“The lift is on the premises. We’re just trying to locate it now. In the meantime, I can show you to your bed. We’ve, uh, given you the ‘grand suite’.”
We were shown to the far end of the room, and led into a large cubicle with a folded-back glass wall.
The nurse left us alone.
“At least the lift is somewhere in the building,” I said. “I was half expecting it to be in fucking Scarborough General.”
While we waited, I read a detailed sign posted on the wall about protocol for contagious disease. I realized that the cubicle we’d been left in had been designed for patients with airborne illnesses.
“Looks like I’m going to catch your muscular dystrophy,” I said.
“Sorry about that,” said Hannah.
Another nurse showed up.
“You’re Hannah Schuyler?”
“Date of birth?”
“March 21st 1986.”
“Good. They’ve found the lift and are bringing it over,” the nurse said. “Now we’re trying to find someone who knows how to operate it.”
“David knows how to operate it,” said Hannah.
“Do you?” the nurse said.
“I’ve used one before,” I said. Once.
“Is it okay if I change into my gown while we’re waiting?” said Hannah.
“Of course,” she said. “You won’t have any problem with that?” she said to me.
“I can manage it.”
The nurse left. I assisted Hannah.
“I hate how she talked to you,” said Hannah. “As if you’re the expert.”
I’ve noticed that a few times, actually, when I’m out with Hannah. People will defer to me when they don’t know how to deal with her. The thing is, I have no idea what I’m doing most of the time. And everything I know about managing physical disability I learned from Hannah. But I think what makes me good at helping her is that I’m not an expert- she’s the expert, and I recognize that. I ask her what she wants done, I listen, usually ask for clarification, and then follow through.
I don’t know why professional caregivers don’t have a similar attitude. The concept that a disabled person might be an expert in their disability is, for some reason, considered radical. To me, it’s just common sense. You want to know something about a disability, or about associated issues, you ask someone who lives with that disability every second of every day. They’re the ones who know.
The lift arrived and I tried to behave like an expert, which I think was what the staff expected me to be. I felt self-conscious getting Hannah into her sling, and transferring her onto the bed- a nurse insisted on helping with that part- and moving her wheelchair out of the way. They had no idea whether I was a real attendant or not, and I assumed they assumed I was. I felt like a fraud, and also like I was somehow taking something away from Hannah.
Yet another nurse came in, and she brought paperwork to sign.
“Date of birth?” she said.
“March 21st 1986.”
“Are you the emergency contact?” she asked me.
“I guess so.”
“What’s your relation to her?”
There was no flicker of judgment in her eyes, as far as I could tell. I felt a little relieved. Still, was she surprised that someone in a wheelchair was in a relationship? Sometimes when Hannah and I are out together in public holding hands, I find myself scanning the faces of people who are looking at us. I’m looking for judgment or puzzlement or anything that suggests they might see us as something other than ordinary. Most of the time though, I find they look right past me and only see Hannah. Or, more accurately, they see her chair.
Hannah was wheeled out on the bed and I left to find the waiting room. I settled into a chair and read Paul Feig’s excellent book Superstud, which is about adolescent sexual angst. It feels odd to read a book like that in the waiting room of a hospital.
After half an hour I went back to the quarantine cubicle to see if they’d brought Hannah back. They had, and she was sleeping. I continued reading. Every now and then a machine would monitor her blood pressure with a loud beep. She’d wake up, ask what it said, and then fall back asleep.
Eventually, a bunch of people bustled into the room. One of them- another nurse- explained that the lift was available at that particular moment, and so Hannah would be transferred immediately. Four people set upon her to transfer her from the bed into the sling. One of the people looked exactly like Stanley Tucci. He wore a small gold cross around his neck. He saw me and beamed.
“Hello, friend,” he said.
The staff chattered back and forth about what to do next and how to do this and who should do what. Hannah was lost in the middle of the commotion. After they finangled her into the sling, a man standing in the corner of the room was called forward. He knew how to operate the lift. He crossed the room, analyzed the lift closely, and pushed a button. It didn’t do anything. He pushed another button, and Hannah was lifted into the air. I moved her chair into the right position and she was lowered into it. Then the staff left and Hannah and I were left alone to change out of her gown.
“They really should be trained in how to operate accessibility equipment,” said Hannah.
“Exactly,” I said. “Why don’t they know this stuff? A hospital seems like the most natural place in the world to know things about disability.”
“But that isn’t the case,” she said. “Medical professionals are trained to handle acute cases- people who can be fixed and made better.”
“Yeah. Fixing people is kind of the whole point,” I said.
“They don’t know what to do with people who have chronic issues, like disabilities. There’s no fixing us. You saw the way the nurses treated me. That’s how they always are. Just… shocked.”
“They don’t expect people like you to show up.”
“They never do.”
“So people who can’t or shouldn’t be fixed are just shunted aside,” I said.
Another nurse came and notified Hannah that if she experienced pain she should go directly to the emergency room.
Pain is something they know how to deal with.
Hannah and I got lunch and sat outside. She napped in the sun and I read and thought about the hospital.
There’s so much they don’t know, and if they knew they didn’t know it, there’s so much that could get better.
Medical professionals- most of them, anyway- already have two of the important qualities needed to help people: a willingness to help, and basic decency.
What they don’t have is the ability to stop and listen. People don’t know how to handle disability, which is absurd, because it’s talking to us all the time. When we see disability portrayed in a movie or TV show, it’s talking to us. When we read about it in a magazine, it’s talking to us. When we see a set of stairs or a kneeling bus, it’s talking to us. Disability is all around us, and it never shuts up. All you’ve got to do is pay attention, and ask the right questions.
And when a disabled person says, “Maybe you should do it this way”, well, maybe you should.