My lower back ached as I walked up the sidewalk’s slight incline on W 44th Street. “Nessi,” the endearing name of the neuromuscular stimulator that rests below my right knee, was turned up too much, increasing the irregularity of my already unique gait.
I was exhausted, yet proud of myself, as I had just had an idyllic morning in SoHo, a reality I wouldn’t have conceived of a year earlier. I had sat outside Matchaful for about an hour while I alternated between sipping my matcha and checking off tasks for the wedding. When I had had my fix, I rode the C train up to 42nd Street and saw Caroline for a few minutes at her work event. I then headed home.
I stopped on the right side of the sidewalk and pressed my right arm against my lower back. When I have walked for too long, I have to perform this action before bending over or sitting or my back will give out. I reached below my knee to turn Nessi down, which reduced the stimulation that lifts my right foot, decreasing the effort of walking. I then heard a man and woman address me.
Normally, even if I have my headphones on, I ignore those who speak to me on the streets. However, the couple stopped in front of me and directly spoke to me. I slid my headphones off my left ear and asked them to repeat. They asked if they could “pray over me,” as they believe in the “Lord’s healing.” I replied, “No, thank you,” and actioned with my right arm that we keep walking. The couple continued talking about their faith until we reached the corner where our paths diverged. I went on my way, left with yet another instance of strangers desiring to pray for me—another reminder that I need fixed.
My philosophy on disability is as follows.
I do not want your charity. I do not want your alms. I do not want your prayers. I do not want your pity. I do not want your handouts or special favors. I do not want your discrimination. I do not want your expectations of me altered because of my disability.
How would you treat me if I was not disabled? You probably wouldn’t even notice me—I would be another six-foot finance bro in the city. If you did notice me, you’d have expectations of friendliness, respect, and competency, depending on our relationship and your personal values, judgement, and moral code. That is what I am seeking. I do not want your expectations modified because I am disabled.
I want similar outcomes from life as other transplants who move here. I want to increase my work competency and network, so I can step into bigger shoes that carry more risk with the goals of improving my firm’s profitability and my family’s station in life. I want to provide a loving, safe place for my soon-to-be wife, pets, and future kids to live and grow. I want to explore the city and travel the world. I want to have freedom of time.
These goals are what I think about from sunrise to sunset. I do not wallow in agony about my disabled state. Do I sometimes wish I could go running with friends or not fatigue when walking? Of course. However, I do not obsess over the impossible. I am focused on outcomes I can effectuate.
Is life harder with a disability than without? Sure, but not for the reasons that immediately come to mind. The reality that I cannot run pales in comparison to the reality of my medical bills, the fear Nessi or my scooter gives out one day, or the financial duress of living in a luxury Manhattan building because nothing else meets my accessibility needs. These items make disability difficult.
I am certain this will be the first of many future volumes on disability. These are my views, and I do not speak for the disability community. The events this morning just made me want to empty my thoughts in this post.
—KH