Despite having lived in New York City my entire life, my new disability has opened my eyes to a whole other side of this place I call home. According to the Americans with Disabilities Act, a person is disabled if they have “a physical or mental impairment that substantially limits one or more major life activities.” My chronic pain has limited my ability to walk and stand for pretty much any distance and any length of time. And since commuting anywhere in this city requires plenty of both walking and standing, many of my day-to-day activities have been limited.
There are almost one million people living with a disability in New York City. Of those 985,824 people, almost 600,000 have ambulatory difficulty, meaning they have serious difficulty walking or climbing stairs (nyc.gov). To put that in perspective, that’s more than everyone living in Baltimore. Imagine an entire city full of people who can’t access buildings or public transit, or even leave their own homes. It’s unacceptable.
Over the past year, I have dealt with a range of emotional, physical, and logistical obstacles that I never experienced before. My limited mobility and generally painful physical existence have been extremely disheartening. I used to enjoy going on long walks around my neighborhood in Brooklyn and exploring different parks throughout the city, but now I limit my walking as much as I can. I used to go to my local coffee shop to do work, but now it’s too painful to carry my laptop even a few blocks.
I have also found that the emotional challenges I’ve faced are just as difficult to overcome as the physical ones. Throughout this year, I’ve really struggled to leave my apartment, even for short periods of time, due to the constant pain in my lower back. This self-isolation only increases the isolation I already feel due to my invisible disability (meaning you can’t tell I have a disability just by looking at me). It’s very difficult to communicate my pain, both emotional and physical, to those around me.
Epicenter-’s latest podcast episode is the guide I wish I’d had earlier in my chronic pain journey. I spoke with disability rights activists from across NYC about their own experiences with having limited mobility. Some of the people I interviewed were disabled as a result of an accident, like Dustin Jones and Rebecca Lamorte, while others were born with a disability that limited their mobility, like Christy Cruz.
In my interviews with these New Yorkers, I asked them the same questions I’ve been trying to answer for the past 12 months. Questions like: “Have you felt isolated as a result of your disability? If so, what do you do to combat that isolation?,” “Have you ever felt like you were falling behind? If so, how do you deal with that feeling?,” and “How has your relationship with your disability changed over time?”
In addition to these more emotion-focused questions, I asked the advocates I spoke with about their disabilities as they relate to living in New York City. The gist of their answers? It’s the best, but it’s also the worst. NYC is considered one of the most accessible cities in the world, but the New Yorkers I spoke with still had plenty to say when I asked, “If there were no barriers what would you change about NYC to make it more accessible?” Most of their answers were related to how inaccessible public transit is in NYC.
Dustin Jones recounted a time when the station he needed to get off at did not have a working elevator. He was stranded underground at Union Square with the only options being to call 911 or to find someone willing to help him. Luckily, someone asked what he could do to help Dustin out. The stranger carried his wheelchair while Dustin had to “butt slide” up the numerous and very dirty stairs in the station. He recalled saying to someone filming his ascent, “This is what we [disabled people] have to go through to live a normal life.”
I not only learned a lot during my conversations with disabled New Yorkers, but I also found my whole experience reporting this story to be extremely cathartic. I went into this process feeling very alone in my pain and limited mobility, but after interviewing these activists, I have found comfort in community and shared experiences.
To hear more about living in New York City with an ambulatory disability, check out the latest episode of the Epicenter podcast here.