On a recent hallway walk, or Gauntlet, as I call it, I had completed 95 percent, making better-than-average time when I came around the final bend and saw my neighbor, Consta– an 80-something busybody who lives two doors down, a woman he is often with, and a delivery man pushing a huge crate on a hand-truck in my direction. I tensed because it is stressful to ambulate when you know you are being watched, especially when you have ataxia, especially when it’s Consta. This man is so annoying, I thought. I bet he says something irksome.
“What are you doing, Johnny?” That didn’t take long.
“I’m just exercising. Taking a walk.”
“Oh okay. Exercising. We’ll wait right here for you to go in your apartment. Take your time.”
You couldn’t rush me if you had a gun, I always think when someone says this.
“Do you have a key?” Consta asked as I approached the door.
“No, it’s not locked,” I said.
“Here, let me open it for you.” He knocked on the door, turned the knob and pushed it open. All of the apartments have door closers and predictably it shut on its own. He did this twice more until I was close enough to put my hand out and stop it from latching.
It’s tricky because the threshold is a half inch high and my walker has 30 pounds of dumbbells in the basket to lower the center of gravity and increase stability. I have to position myself and give it a strong lift while pushing against a resisting door. At its best, it’s not graceful. I know this. It’s the only way I can take these walks. Thankfully being graceful is not a requirement.
I was in position. The door was in position. Consta stood there, studying me, not quite out of the way. By now the woman and the delivery man with the huge crate had come to within a few feet of me. If this is how I have to do it, so be it. I shifted my attention to the task at hand; a mistake could result in a fall or some embarrassing outcome. I curled the walker up by its backrest and started to push into the door over the threshold, as I always do, when the ever courteous Consta pushed it open again, helping me. Except, of course the door did not stay opened, because it is designed not to. It came back and bumped me, not hard; that wasn’t the problem. It caused enough of a distraction that my knees buckled and my hips went out. I was holding the walker, so I didn’t go totally down. I’m not sure if my knee touched. That’s how I determine a fall; NFL rules; knee, butt or elbow. Either way, I caught myself. I was fine. Consta and the woman rushed to put their arms on either side of me, creating a cage effect that is supposed to prevent a greater incident. They’ll catch me! This act was done out of instinct and a desire to not see the situation worsen, but if I’m going down their arms aren’t going to make a difference. I wasn’t going down. I straightened up, concerned only about going the rest of the way inside and closing the door. Consta was all, “You’re okay, Johnny. Don’t worry about that.”
I’m not worried about it, Consta. Leave me the fuck alone, please. Then the woman said one of the most irritating things a person could say.
“Who are you with?” My heart dropped when I heard this. Who am I with? Do you fucking see anyone with me? Would it matter? Are you going to tell on me? A degrading question from a woman I’ve seen a hundred times before. I’m glad I didn’t say what was on my mind. She did not comprehend that by asking such a question she was implying I should always have someone with me, that I couldn’t possibly be independent because of my disability. She doesn’t know autonomy is my biggest fight and that what she said is insulting, and a subtle threat to my way of living. It put the idea in my head that maybe I was in less control than I thought. She was projecting onto me self doubt where I didn’t have any.
“I’m not with anybody.” I finished entering the apartment and now another neighbor was on the scene, waiting for the hall to clear so she could go through to her home. “I’m a lot better when I don’t have a crowd of people watching my every move.” I looked out to see four people in my doorway awkwardly smiling. The door shut. I waited a few seconds and sighed a loud, “Fuuuck youuu,” not exactly sure who or what I was cursing. Consta for his interference, the woman for her question, my nerves for not telling them to please stand back in the beginning, FA for causing all of this in the first place, the force in my head that made this seem like a bigger deal than a harmless stumble.
––––
The next day I went swimming. Pretty vigorous– walk two laps, swim twenty-two breaststroke, walk two. I used to time myself. Not anymore. If my time wasn’t where I wanted it to be, I’d feel disappointed. That’s not fair to me. So I stopped wearing a watch.
The process for entering the pool is: scooter across mats to the ladder and steps where I park, grab the ladder with my left hand, stand and side-step into the water down three steps. Lane two is my favorite. I dive from the step with my goggles around my wrist and go to work. I come out the same way I go in. I sit on my scoot and ride it to the jacuzzi ten feet away. I park and enter the same way as the pool.
On this occasion a woman was in my preferred spot; not cause for concern, as the jacuzzi holds ten people. I was making my way down to the right of the railing, moving very deliberately, as I do, when the lady waded over into my path. I stopped and looked at her, puzzled. “There, sit over there.” She pointed to my corner. I figured she’s seen me sitting there in the past and assumed it’s easier for me to go this way. Not accurate, but a considerate thought. The only way this is complicated is if I have to stop and switch sides.
“You’re making it trickier on me. I’ve already started this way.” I don’t think she heard me over the jets and bubbles; she didn’t react. She watched me the same way Consta did the day before while I maneuvered to my corner.
I stretched my pecs, reaching my arms back, holding the wall on both sides while I lean forward with my head down for 30 seconds. When I looked up, the woman was in full prayer formation– tented hands pressed against the bridge of her nose, sometimes over her closed eyes, her face pointing down, then up to the heavens. She opened her eyes and was crying. I tried not to stare, though it was hard to look at anything else. I had a pretty good idea what she was doing before she confirmed it. After two minutes she started towards the ladder and gazed at me. “I prayed for you.”
“Don’t do that. Don’t pray for me.” I didn’t want to give this more attention than it necessitated. I cringe when people view me as an example of something gone wrong, needing fixing via divine miracle. I didn’t want to elevate my volume to be heard over the jets. I sort of wanted to say more to make a point but more so I wanted to soak mindlessly for a few minutes. What exactly did you pray for? How do you think what you’re doing makes me feel? “I’m happy with who I am. Don’t pray for me.” Pray for world peace. And get the fuck out of my hot-tub, self-righteous cunt. Pardon my language. My mind was not being very polite in that moment.
Nothing against prayer. I have faith. I may not be able to quite explain it. I don’t have to. I don’t like it when people push their faith on me; like their beliefs are better than mine; like my problems, my ataxia have anything to do with my beliefs. Even the evangelicals ask first if they can pray for you (I said ‘sure’ the first couple times. ‘If you want to include me in your prayers, have at it.’ I now know that ‘pray for you’ means ‘put my hands on you and make a public spectacle. ’I say no thanks and talk to them about life. If the individual has a free-thinking mind capable of straying from the script, the conversations can be deep. Often they’re pushy jerks, sometimes they’re cool. I talked to one lady for three hours. She didn’t know what she had proselytized upon.). This was unsolicited. We are at the gym, not church. My workout was harder than yours, I am positive. The way her face looked she might as well have been saying in plain English, “Your appearance upsets me to the point where I am overcome with emotion.” Fuck that.
One of the reasons I love to swim, not just because it’s a great physical workout, is because I feel unencumbered. With ataxia, sometimes it feels like gravity is stronger; it wants my ass on the floor. I float on top of the water and glide without any weight. Also, not much has changed in how it’s done since I was five years old. I’m slower and there have been adjustments here and there, but it’s still me wearing a swimsuit and goggles, moving through the water. If there was no such thing as ataxia and all else was equal, God willing, I would be doing the exact same thing. That lady’s bullshit almost ruined my day.
And yet, neither case surprises me. People encounter someone who seems to be, from their perspectives, struggling, in need of assistance. I didn’t need assistance but if I had and they didn’t offer any, even a prayer, it would have seemed rude and possibly negligent. That’s one way of looking at it. It could be a generation gap. For so many years people with disabilities rarely went in public, particularly on their own. Perhaps a bit of culture shock. Maybe they’re condescending bigots with an agenda to make people like me uncomfortable. Unlikely. It doesn’t matter. They’re not stopping me from doing what I want. The ableist mentality is belittling and pervasive. I don’t know what to take from these experiences. What can I do to prevent other people from making me feel like shit while providing unwanted, unwarranted aid? Humans like to help but even more we like to be thanked for helping, to feel needed. I’m easy-pickin’s for a thank-you. I am. And I’m generous with them. Give me a chance to make it a no thank-you.