Year-old travelogue…

21 February, 2019, 07:50

 

My new support worker Conrad and I have set off toward Denver.

 

Already Conrad is sitting down on the job.

 

Image: Conrad, an ambiguous green stuffed animal, sitting on a couch.

 

21 February, 2019, 08:47

 

My new support worker Conrad and I are on our way to Denver.

 

Conrad, who attended a social role valorisation training on Tuesday, has confiscated my stim toy out of a concern that if I look weird, people will not include me.

 

I suspect the fact that I am staring murderously at a stuffed animal may also be off-putting.

 

Conrad says it is important to comply with social expectations.

 

Exactly one of the two of us has brought trousers to wear on the train, is all I am saying.

 

Image. Conrad, an ambiguous green NAKED stuffed animal, sits on a couch impassively, holding a blue tangle

 

21 February, 2019, 09:39

 

My new support worker, Conrad, and I are on the way to Denver.

 

I took out my phone, loaded my AAC app, and typed, “Hullo. I am on the 2pm to Denver. Where will I need to go, and when will I need to go there?” Then I showed it to a friendly Amtrak lady.

 

She looked at my ticket. Then very loudly and slowly she explained, “YOOOUUURRR TRAAAIN LEAVES AT TWOOOOOOOOOOOO.” I thanked her and we rolled away.

 

“Success, Conrad!” I said excitedly. “She talked right to me instead of talking to you about me!”

 

With tears in his eyes, Conrad high-fived me and we continued on, chattering the whole way about how all those years of struggle are finally paying off.

 

Image: Conrad, an ambiguous green stuffed animal, sits on a wooden bench at Union Station.

 

21 February, 2019, 10:23

 

I am traveling to Denver with my new support worker Conrad.

 

“You know, Cal, if you hadn’t told me, I never would have known you were autistic,” he said.

 

“What do you mean?” I asked.

 

“Well,” he said, “You just don’t seem autistic.”

 

“I have no idea what you are talking about. I’m white. I’m male. I’m incontinent. I’m rude to people. I’m wearing blue. I’m excited about going on a train. Isn’t that basically the stereotype of autism?”

 

He stared at me. “Uh,” he said.

 

“IS THIS BECAUSE I’M AN ADULT?” I asked.

 

“I was trying to compliment you,” said Conrad.

 

“Stereotypes are bullshit,” I told him. “They are inaccurate and people use them as shortcuts in ways that direct resources disproportionately and unjustly in certain directions.”

 

“You need to be appropriate,” said Conrad.

 

I decided he was right so I clicked over to the page of my AAC app where I keep my preprogrammed swears and started hitting buttons at random.

 

Now Conrad is rewriting my behaviour plan.

 

Image: Conrad, an ambiguous green stuffed animal, with a pad of paper and a pen, sitting on a bench in Union Station.

 

21 February, 2019, 11:16

 

I am going to Denver in the company of my new support worker Conrad.

 

We don’t even board for two hours and already Conrad has got drunk on cheap Amtrak wine.

 

“Do you really think this is appropriate?” I asked.

 

“Have you seen the lousy wages direct support professionals and community attendants get?” Conrad asked. “You were expecting me to get drunk on Grey Goose, you classist jerk?”

 

I have conceded the point.

 

Image: Conrad, an ambiguous green stuffed animal, lying on his back next to a plastic cup of cabernet on a table below a sign reading “To All Trains”

 

21 February, 2019, 12:49

 

I am gradually making my way to Denver with my new support worker Conrad.

 

Having got what I hoped was drunk enough to cope with the fluorescent hell (better luck next time) we have made it here to Boarding Gate F at Union Station. I had to carry Conrad on my lap. He is drunker than I am.

 

On the way we were stopped by 2 Amtrak employees.

 

“What city are you going to?” one asked.

 

I pulled out my phone with the AAC app, typed “Denver,” and showed it to them.

 

The Amtrak employee rolled his eyes. “Just tell me what city,” he said.

 

I made my best “Whatever” face.

 

He stared at me for a minute, then looked at my phone. “Oh,” he said.

 

He directed me to continue in the direction I had been going.

 

As we passed the other worker looked admiringly at Conrad. “Are you his friend? You must be very special,” she said.

 

Conrad threw up on her shoes.

 

Image: Conrad, an ambiguous green stuffed animal, sits glassy-eyed and off-balance on a plastic waiting area seat.

 

21 February, 2019, 13:44

 

I am heading to Denver with my new support worker Conrad.

 

We are just about to board the train, and we are watching the people ahead of us.

 

“Does it ever make you sad?” Conrad asks as a redcap goes by helping a couple with their luggage.

 

“Does what ever make me sad?”

 

“That you have a disability?”

 

“Does it make you sad that you have an amphibiosity?”

 

“I do not have an amphibiosity. I am an amphibian.”

 

“Weird,” I say.

 

A woman dropped something on the floor and the person next to her leans down and picks it up.

 

“Why would I be sad that I am disabled?” I ask.

 

Down on the track a man lifts another passenger’s suitcase into the car.

 

“You know. Because you don’t do stuff by yourself. You need someone else’s help.”

 

The gate agent explains to a young couple that they are at gate F but they should be at Gate D. They thank the agent and leave.

 

“I need someone else’s help,” I repeat.

 

“Yes. Does it make you feel sadto know you don’t do things all by yourself?”

 

I watch another redcap moving more luggage for a family.

 

“No, Conrad,” I say. “It doesn’t.”

 

Image: back view of ambiguous green stuffed animal sitting on wheelchair joystick by electronic sign with train information.

 

21 February, 2019, 16:15

 

I am riding the train toward Denver with my new support worker Conrad.

 

We are looking out the window at the flat Midwestern landscape.

 

“It’s pretty,” I say.

 

“It is,” says Conrad, “but there are no lily pads.”

 

There are no lily pads.

 

“I have a job in your life,” Conrad says. “A lot like your wheelchair does. I’m a tool for independence. But unlike your wheelchair I am more than just a tool.”

 

We sit for awhile and watch the fields go by and think about lily pads.

 

Image: Conrad, an ambiguous green stuffed animal, looks out a train window at a snowy field.

 

21 February, 2019, 16:50

 

I am in Galesburg on my way to Denver with my new support worker Conrad.

 

“You should take off those earphones when I’m talking to you,” he says.

 

“I disagree,” I say.

 

“How do you think it makes me feel?” he asks.

 

“I think it makes you feel happy,” I say.

 

“It doesn’t make me feel happy.” In truth, Conrad does not look as happy as I had expected.

 

“Happier than if I didn’t use them,” I say. “They are assistive technology. Assistive technology makes everyone’s life better.”

 

“How exactly is it making my life better for you to use headphones?” asks Conrad.

 

“Because I need to listen to music to stay calmer,” I say.

 

“You could take the headphones out and we could all listen.”

 

“I am listening to a bagpipes song on 6-hour loop,” I say.

 

Conrad looks at me.

 

“How does it make you feel that I am wearing headphones?” I ask him.

 

He sighs. “Happy.”

 

I smile. “I knew it! Assistive technology makes everyone’s life better.”

 

Image: ambiguous green stuffed animal in front of a train window with a man smoking behind him

 

21 February, 2019, 20:57

 

Night has fallen on my journey to Denver with my new support worker Conrad. We have been on the road for 13 hours.

 

He’s drunk again.

 

“When do we go back?” he asks.

 

“We get back Tuesday afternoon.”

 

“Wait — WHAT?”

 

“I told you this when I hired you.”

 

“I thought you were kidding!” He waves in my general direction. “Cripples don’t go to Denver!”

 

“Some do.”

 

He lowers his voice to a hiss. “Don’t you know about the overtime policy?”

 

“I do.”

 

“I’m only allowed to work so many hours a week!”

 

“Well, actually…”

 

“I’ll be a fugitive by Saturday!”

 

“I’m paying out of pocket, Conrad. You’ll be fine.”

 

“Wait, are you doing something illegal too?”

 

“No. I’m just not on a waiver program. Only so many people get services at home and I’m not one of them.”

 

“You’re pretty fucked up,” he says, eyeing me.

 

“That doesn t qualify you. There’s a waitlist. Anyway…”

 

“You’ll be sorry when Elliott Ness comes bursting through our door!”

 

“Elliott Ness is not coming through our door.”

 

“You can’t be sure of that!”

 

“I can. First, I am not on a waiver so it doesn’t even apply to you. Second, they wouldn’t burst through your door. They’d just stop you working. Third, Elliott Ness-”

 

“Well, that’s wrong.”

 

“It is.”

 

“What if you need me?”

 

“I do need you. That’s why I am putting up with this silliness.”

 

Conrad takes another mouthful of wine. “No, if the time is up and you still need me to work.”

 

“Again, this doesn’t actually apply to us because we aren’t in the waiver program. But either you work and say you didn’t. Or you risk your job and paycheck. Or you leave me to fend for myself.”

 

“That’s a helluva choice.”

 

I look out into the night. There’s not much to say to that.

 

“And Elliott Ness…”

 

“Conrad,” I say. “I know you are new to Chicago…”

 

“I was being warehoused,” he says distantly. “And then one day a freedom fighter hid me in a cardboard box and snuck me out.”

 

“If they scan your barcode when they put you in the box, it isn’t really sneaking, Conrad.”

 

“You don’t know! And after a lot of darkness and jostling, the box opened and there you were.”

 

“I was.”

 

“And we had the job interview.”

 

“We did. But again… Conrad, have you been watching The Untouchables episodes to learn about Chicago?”

 

“Yes,” he says proudly. “I’m on Season 2!”

 

“The Untouchables isn’t an accurate contemporary account….”

 

He glares at me over the bottle.

 

“Okay,” I say. “Okay. I give up. But can you do me one favor?”

 

“What?”

 

“After you are done watching The Untouchables, can you watch Crime Story? I’d like to take a trip to Las Vegas.”

 

Image: sleepy looking ambiguous green stuffed animal lolling on my plaid jacket cradling a wine bottle by a dark window

 

22 February, 2019, 09:57

 

I have reached Denver with my new support worker Conrad.

 

“Now what?” he says.

 

“Now we go to the hotel,” I tell him.

 

“How do we do that?”

 

I pause to look up the address.

 

“Is someone meeting you?” a woman interrupts.

 

I shake my head.

 

“Look,” says Conrad. “There’s a bus.”

 

“Let’s walk,” I say.

 

“It’s cold.” It is cold.

 

“I’m afraid of buses,” I tell Conrad.

 

“I’ll write a program to increase your bus-using behavior,” he offers.

 

“No, you fucking won’t. You’re a support worker, not a control worker.”

 

“That’s my job.”

 

“Your job is to support me so I can live my life my way.”

 

“Right.”

 

“You deciding I need to increase my bus-using behavior is not supporting me. It is controlling me.”

 

“Bus-using behavior is very useful,” Conrad says.

 

“BOLLOCKS YOUR BULLSHITTY BUS-RIDING BEHAVIOR!” I type in all caps.

 

“Indoor voice,” says Conrad. “People are staring.”

 

“I’m a middle-aged nonspeaking wheelchair user in conversation with a small green stuffed support worker of indeterminate species who came to Denver in February without any trousers. People are gonna stare.”

 

Conrad rolls his eyes.

 

“I don’t want to go on the bus,” I say. “But it’s cold. But I don’t want to go on the bus. But it’s cold. But I don’t want to go on the bus. But it’s cold.” I take a deep breath. “We will try to go on the bus. But I can get off if I have to. And you will do your best to be a supportive presence.”

 

“Okay,” says Conrad.

 

So we ride the bus.

 

And it works out.

 

Image: Conrad, an ambiguous green stuffed animal, sits on a bus luggage space gamely attempting to look supportive

 

23 February, 2019, 02:51

 

I am in a hotel in Denver where my new support worker, Conrad, has met some of my friends.

 

“They seem to like you,” he says now. “Do you think they know you have a disability?”

 

“Pretty sure they do,” I say, reclining my wheelchair.

 

“I mean that you have autism.”

 

“Pretty sure.”

 

“You must be very grateful that they put up with you in spite of your autism,” he says.

 

“I am grateful that they are my friends. They are my friends because of who I am and who they are, not in spite of who I am.”

 

“I didn’t know how hard it is to spend time with people with autism before I met you. I knew a little bit about autism because my friends Simon and Tony explained it. But you can’t really know about autism until you have been in a carer’s shoes.”

 

“You don’t have shoes, Conrad. You don’t even have trousers.”

 

He ignores me. “Do you think they feel sorry for you?”

 

“No,” I say. “They haven’t really met you yet.”

 

“You don’t have a sense of humor,” he says.

 

“I might have a little bit of a sense of humor.”

 

“You don’t have imaginative play skills.”

 

“If I didn’t have imaginative play skills, we would not be having this conversation.”

 

“You are often rude. I know you don’t mean to be, but sometimes you say the wrong thing.”

 

“Sometimes I say the wrong thing,” I say. “Then I feel bad. In fairness, sometimes I am rude on purpose.”

 

“You did challenging behavior before,” Conrad says.

 

I don’t want to talk about challenging behavior. Not the kind he means anyway.

 

“You did challenging behavior for no reason,” he says. “We should work on your challenging behavior so you can have friends.”

 

“I was in pain and sick and I couldn’t get my doctor to call in the meds I needed and I kind of melted down but I went in the bathroom and was private, Conrad. I had a reason. It’s fine.”

 

“If they knew you do challenging behavior they wouldn’t be your friends.”

 

“Conrad, this isn’t kind and it isn’t true.”

 

“And you don’t think about other people’s feelings.”

 

“It must be very hard to be around someone like that,” I acknowledge.

 

“It must be so hard for them.”

 

“Conrad,” I say, “you are a small green plush package of challenging behaviors. You are doing one right now.”

 

“No, I’m not,” he says. “I don’t have an intellectual and developmental disability.”

 

“People like me. Okay, a lot of people don’t like me. And that hurts very much. But there are people who like me. And I like them. You just met some.”

 

“Maybe they don’t know you do challenging behavior.”

 

“They know.”

 

“You know,” he says thoughtfully. “I could write a program to teach you friend behaviors. I think in 5 or 6 years you could even be friends with me.”

 

“Conrad,” I say, “do you remember when we were sitting there and then we looked up and my friend was there and they were smiling and they hugged me and they sat down and we were talking and we had jokes you didn’t understand and memories you didn’t know about and then they had to go and we said we would see each other tomorrow?”

 

“Don’t change the subject,” says Conrad. “What do you think, should I write you a program to teach you to be my friend?”

 

“No, thank you,” I say. “I think I am good with maintaining a professional relationship with you.”

 

Conrad shakes his head sadly. “It makes me so sad that you have autism,” he says, “so you don’t understand the value of friendship.”

 

Image: Conrad, an ambiguous green stuffed animal, sits dejectedly in a hotel room pondering my unsuitability for friends