David is both my boss and my best friend. He’s the first person I think to go to when I have a problem, outside of Emmet. Emmet and David are good friends too, though when they first met they didn’t get along at all. We’re the best of friends now. David used to tease me that he wished I could drive and then we could take on the world, but he knows it makes me feel bad, so he’s stopped.
Technically I can drive, as in I have my license, but I get nervous when I do, and I’ve gotten more nervous as I’ve gotten older. I could maybe drive on a quiet street in a small town, but I don’t think I could do Duff Avenue or Lincoln Way in Ames, the main in-town streets that most people from big cities would laugh at me for avoiding. Don’t get me started on store parking lots.
To be honest, managing my own bedroom was struggle enough, but with David’s help, I got it done. He could only do a little here and there with his grabber, but he redirected me and kept me on task, because as he put it, he was good at bossing people around. “Begin with the pile of clothes over there,” he’d tell me, reminding me to sort them into piles of dirty and clean, and when it got to be too much, he suggested I call the whole lot dirty so we could keep moving. This was something Emmet would never have done. We’d have stood there for fifteen minutes having a discussion about each item. This was where David came in handy.
“You’re making some good headway,” he remarked after we’d worked for a half hour. “Why don’t we stop and have a break?”
It seemed early to be taking a break, but I was exhausted. I wondered if it showed, then figured it probably did. Feeling glum, I nodded and followed David as he maneuvered his chair into the kitchen. I sank into a chair at the table before I realized as host and as his staff I should be the one getting our snack, but as I rose, he waved me into my seat.
“Sit. I got this.” He snorted and gave me a wry smile. “Well, maybe I got this. Depends on how high up you put stuff and if I can reach it with my grabber.” When I tried to stand up, he waved at me harder, his arm flapping awkwardly. “Sit down, Jer. It’s a joke.”
I didn’t laugh. “Sorry. I’ve been…” I didn’t know how to finish that sentence. Not without getting in trouble. I’ve been a mess. I’ve been awful.
“You’re having a rough time. Which is why I’m helping you out.” He snagged a box of crackers with his grabber and a stack of plastic glasses. “How’s Emmet doing since you confessed about the depression, by the way?”
“Intense. He wants to fix it.”
“He wants to help you. Not the same thing.”
“He can’t see the difference.” I watched David tuck the stack of glasses under his chin, pull on the stack with his more functional hand, managing to leave two under his chin. It was a neat trick. “Maybe he doesn’t want to fix it exactly. He’s up to something, though. It makes me nervous.”
“No offense, but everything makes you nervous.” He slid the extra cups onto the counter, caught them with his grabber, then aimed the stick at the cupboard. “Okay, I can get them put away, but they’re not going in under Emmet’s standards of neatness. I’ll try to remember to explain to him, but if he gets bothered by this, blame me, you got it? It’s the best I can do with my motor control.”
“I’ll tell him. It’ll still bother him, but he’ll understand.”
“Cool. So what are we having? Water? Soda? Juice? Tea? Whiskey sours?”
The last comment was added to make me smile, and it worked. “There’s green tea in the fridge. I’ll have that please.”
“Dude. If that’s all there is, I’m having water.” He opened the door, then exclaimed in excitement. “Orange soda. Are you for real?”
I’d forgotten about the soda. “It’s for you. Emmet got it the other day.”
“Train Man. You come through for me.”
David wrestled the containers out of the fridge with his better hand and the elbow of his not-so-good hand. This was a trick we’d learned together through trial and error. Apparently a physical therapist or two had also suggested something similar, he admitted later, but David and therapists had rocky relationships on the best of days. He and I, however, got along fine.
It took him about fifteen minutes longer to get us drinks and crackers and cheese than it would have me, but I didn’t mind the time to sit quietly, and David, I knew, appreciated someone letting him do something for himself without trying to help or praising him afterward like he was a toddler. He said this was why I was a good aide, because I was patient. He told me I needed to remember, when the depression told me I was worth nothing, that I was the best aide he’d ever had.
I still didn’t know how to explain to him it was like throwing a compliment into a black hole, so I usually replied, “Okay” and hoped he’d talk about something else.
Today he did talk about something else, thankfully. “Tell me about this Darren,” he said around slurps of orange soda through his special straw, and bites of cracker and cheese. “He’s autistic like Emmet, right?”
I thought about how to phrase my answer. “He’s autistic, yes, but not like Emmet. He’s nonverbal, to start.”
“Like, he doesn’t talk? At all? But I’ve heard him whispering to videos on his iPad.”
“That’s the only time he can talk, and that’s as loud as he gets. Otherwise all he can do is make sound, but it’s more like a bark.” A thought occurred to me. “He’s like Carly Fleishmann.”
David sat up straighter, his whole demeanor becoming both serious and interested. David had a major crush on Carly Fleishmann, a young woman with autism and several other disabilities who had written a book with her father and become something of a minor social media celebrity. “Oh, okay. So does he use a keyboard to talk like she does?”
“Kind of. He uses a special sign language. Emmet knows it, but I haven’t learned much beyond the basics. It’s like ASL, but it’s modified in ways that confuse me. Mostly he uses an iPad to talk for him. He’s smart, but most people don’t think he is. All they see him doing is watching YouTube videos.”
“And you roomed with him at Icarus, right?”
I nodded, crumbling my cracker with my fingers. “Icarus is pretty grim. I wish we could get Darren into The Roosevelt.”
David gestured at the walls. “Well, I told you about the opening. God knows there’ll be more, and there’s still nobody on the waitlist, not anymore.”
“But that’s just it. He can’t afford it.”
David’s cheeks colored, like he was embarrassed. He stared at his lap. “Oh. I…I could talk to my dad, if you want. Maybe…”
He didn’t finish the thought, because he knew he couldn’t get his dad to do anything like what Darren would need. Not with The Roosevelt already in trouble.
I laid the rest out, to make it clear. “Darren can’t afford The Roosevelt, not in any way. He can’t get a job. He’s on disability, but his parents can’t afford what it costs here. I mean, I couldn’t do it without the discount from being your aide and Emmet’s help with food and things. Which I feel bad about sometimes, but there’s nothing I can do about it. It’s expensive to live here.” I realized what my remark sounded like and added, quickly, “Nothing against your dad or anything. I don’t think he charges too much.”
“No. I know what you mean. But that’s the problem, apparently. It costs a lot to run a place like this, it costs a lot to live with disabilities, and nobody wants to pay for it. Nobody can pay for it, except the state, who won’t.” He rolled his eyes. “Too busy saving the money for the normal people.”
Normal people.
I stood up and went to the window, folding my arms over my chest as I stared down at the street, at the sidewalk full of people coming and going. From school, from work. To friends, to family, to the grocery store. To the bus. Laughing, talking. None of them thinking at all about how high the curb was or how busy the crowd or how many strangers might talk to them. Normal people. These were the people who deserved the money from the state, not me. What for, I didn’t know.
Tax relief, my dad would say.
They looked pretty relieved to me already.
Emmet would get after me for using the word normal, and I know he’s right, but it’s the word in my head. The people laughing on the street and not caring about anything while I was barely able to leave my apartment, barely able to get to the window to watch them—they were normal, and I was not. Emmet says they’re on the mean, but this always sounds strange to me. What was the term, the usual term? Able-bodied, David said about people who weren’t paralyzed. Technically I was able-bodied, by that standard, but I didn’t feel very able. I’m not able to do a whole hell of a lot. I decided I wasn’t able-bodied, because I was on disability, so no. The word wasn’t for me either.
Able-bodied people didn’t worry about things like I did. Like whether or not they could put themselves together enough to get through their day. Or a grocery store. Or a room cleaning. Able-bodied people didn’t have to make a strategy to get things out of a cupboard. Or have a friend over. Or make sure they had a place to live. They didn’t have to hope their parents kept paying their rent at their fancy residential facility. Or hope every time there was an election Congress didn’t decide to cut their insurance.
Able-bodied people didn’t look at history books and read about the populations sent to the gas chambers and know they would have been at the front of the line to be eliminated as unnecessary. Well, some of them did. Some of them like me had two strikes. Disabled and gay. If I were Jewish or Romany, I’d have three strikes.
I knew I wasn’t wanted. Every day, every aspect of the world, of the culture, made a point to tell me I was different and less than, and so were all my friends. And I was tired of it.
I went back to my chair, tucked my feet onto the seat, and hugged my knees.
David came closer and studied my face like he was trying to read all my secrets. “Talk to me, J.”
I shook my head, turning my face away. “If I talk, I’m going to say something awful.”
David nudged my leg with his wheel. “Hit me with it. I want to hear your awful.”
I swallowed, feeling guilty, but mostly…angry. “Sometimes I hate able-bodied people.”
I’d expected him to laugh, even bitterly, or make another one of his jokes. But all I was met with was long silence, and when he finally spoke, all he said was, “Me too, Jer. Me too.”
CHAPTER SEVEN
Emmet
I wanted to get Jeremey the service dog right away, before the New Year’s Eve party. But I soon learned that service dogs were not easy to get.
I discovered there were different kinds of support dogs too, and they did different things. There were emotional support dogs, which weren’t as expensive but weren’t trained as well and weren’t allowed into public spaces the same way James’s dog had been. They worked with individuals, but they could just as easily work with any individual as the next one. They could be admitted to apartments that had “no pets” policies, but they couldn’t do much else. Therapy dogs couldn’t do that, and they also couldn’t be brought into public establishments, but they could work with multiple people at once, which was more what they were designed to do.
What we wanted for Jeremey was a service dog. They were covered by the ADA, and the owner had the right to bring them into public establishments. They could tolerate a wide variety of experiences and environments. Like emotional-support dogs, they could be brought into apartments with “no pets” policies, but they were specifically trained to assist one person and were often tailored to meet their unique needs. This meant they were expensive.
Very expensive.
They required more time and effort as well. We were going to need Dr. North’s help too, since a therapist would need to be involved in both the approval and the training, making sure the dog did what Jeremey needed it to do—but I soon learned, however, even if I had no financial issues, service dogs were still difficult to acquire. I found only one place in Iowa with service dogs, and they had a waitlist of six months. Also, they needed a deposit of five thousand dollars. I was glad I’d made the phone call with my dad because I couldn’t speak after that. I began humming and flapping, and my dad had to get on the phone and finish the conversation with the woman I’d been talking to.
I didn’t have five thousand dollars. I only had three thousand in my IRA account, and that was for retirement. And this five thousand dollars was only a deposit. They’d want more money later. Depending on the dog, I might need as much as twenty thousand dollars. It would be years before I could get a dog for Jeremey.
I hummed and rocked and flapped my hands, wishing I were at home in my apartment so I could go to my closet in my sensory sack.
“Hold on. Hold on.” My dad was off the phone now, and he sat in front of me, using his calm down, Emmet voice. “That was our first call, and the woman told me there are places we can go for scholarships and grants, and other people in and around the Midwest training dogs we can talk to. The grants are competitive, and the need for dogs is higher than the availability, but here’s where we might want to bring in our secret weapon. Because you know who is aces at writing grants and winning scholarships and bullying her way into getting what she wants for her kid.”
Mom. He meant my mom. I flapped with a different kind of agitation now. She’s going to get bossy, I signed.
“Probably so. Look, you take the good with the bad. Where do you want the bossy, son, helping your boyfriend get a service dog, or on the other side?”
I wanted bossy to help me without bossing me. Which wasn’t possible. And I really wanted Jeremey to get the dog.
I thought he would tell her what was going on, but he didn’t. He had me do it, which had to be in sign because I was worked up, so much so I made grunting noises like Darren while I told the story with my hands. I went to my apartment first to put on my Stitch T-shirt, which was my sign that what I wanted was especially important to me. I practiced what I wanted to say, writing it out and signing in front of a mirror, but even with rehearsal it was the most difficult thing I’ve ever done. I was quite upset toward the end. I had tears as I signed with angry and sloppy fingers. I don’t know why Dad didn’t just tell her. I was too worked up. And any second she was going to interrupt and tell me what to do.
Mom didn’t do that, though. She listened quietly, and when I made barking noises—not like I was pretending to be a dog, they were part of my autism getting the better of me because my emotions were so over the top—she put her hand over her mouth. When I started crying, she started crying. I was a little upset, but I needed to finish, so I kept going until I was done, and then I signed, I’m done, and put my hands in my lap.
Mom sat there for a minute, not saying anything, keeping her hands over her face as tears leaked through her fingers. My dad stared at her, not crying, but he had one of those looks I can’t read. Mom nodded at him and patted his leg. Then she turned to me. She didn’t pat my leg, but she looked at me the way she did when I was ten and she promised she would take care of the teacher who had upset me and made me bang my head against the wall until I bled.
“Emmet, I will get Jeremey one of those dogs, as quickly as I can. And you will not spend one red cent, and neither will he, so don’t worry about it, not anymore. Okay?”
I was surprised by this, but this was the same intense face, and she’d made the bad teacher go away the last time I’d seen it. I trusted her. Okay, I signed. Then, because it was polite, I added, Thank you, Mom. I remembered who had brought her here and added, And Dad.
Mom started crying again, but Dad only winked at me and rubbed her back.
We hugged also, and my mom called me her jujube many times, but eventually I went home and spent some time in my sensory sack.
When I came out, I still thought about the service dog a lot, but there wasn’t much I could do about it, so I did my best to focus on other things, such as the preparations for New Year’s Eve. We’d had parties before at The Roosevelt, and I knew how everything would
go, the getting ready, so it was comforting to help. I showed up in the lounge, and Sally gave me a job. I was assigned to help prepare the snack food, which was a nice job because it was the same job Jeremey and David were already doing.
Jeremey smiled as he saw me come into the room. “Hi, Emmet. You’re later getting home than I thought you’d be.” He looked carefully at my eyes, and he put his concerned face on. “Is everything okay? Did something happen at your meeting?”
I knew he’d thought I had a work meeting when I was in fact talking about the service dog, but I didn’t want to tell him yet, in case it didn’t work. Though I realized now that I stood in front of him maybe I should talk to him about it before we got too serious. I rocked a moment, wondering if I should do it right now.
Jeremey put down the cup he was using to mix M&M’s into the popcorn and approached me. He didn’t touch me, but he came as close into my space as he could. As close as only Jeremey is allowed to get. “What’s wrong?”
I shut my eyes for a long second and drew in a slow breath, letting the smell of Jeremey fill my senses. I would know him by his scent alone in the middle of a crowd of strangers. I know the perfume of him over his sweat, over the pollution of rooms he’s walked through, of kitchens and cleansing agents and exhaust from cars. I know the color of Jeremey’s smell—a bluish green with brown and white flecks and bits of yellow, like an ocean wave coming into my shore. I know the shape and geometry of Jeremey’s smell, the weight of it. I have made computer programs to express how I feel about his smell, though I haven’t shown anyone, even him, because I’m not sure he’d understand. I don’t need him to understand, though. Not about the smell.
What I did need in this moment was for him not to worry, especially when there wasn’t anything to worry about. His scent had calmed me, reminded me he was here and he was okay, that I was okay, that we all were. And I thought, there’s no way Mom would get a dog tonight, so I could enjoy the party and find a way to tell Jeremey about it the next day, or whenever it felt right.
Shelter the Sea Page 6
