Charley and I visited Seoul during the summer of 2015. Walking was our favorite form of transportation at the time and we covered a lot of ground during the trip. One day in particular, we walked from our hotel in Seoul Plaza to visit the art galleries of Insa-dong, and then onto the palaces of Gyeongbokgung and Changdeokgung, spending many hours on our feet and walking over 10 miles. My legs were feeling shaky as we journeyed to the subway stop. I suppressed my body’s desire to hop in a cab since we had plenty of transit credit to use. Panic struck me as we got to the subway platform. I needed to sit down – badly. The minutes ticked by as I uncomfortably shifted my weight from side to side, trying to support myself on a nearby pillar.
Photo of me and Charley at our wedding reception by Ryan Sin
The train finally arrived, and I sprung into action, hellbent on getting a precious seat. When I boarded, I saw exactly one open seat, and I elbowed my way through until my butt finally landed there.
As Charley stood next to me, I noticed that he looked uneasy. I followed his glance toward a woman who appeared to be in her late 60s or early 70s. Charley is close with his grandmother and possesses a keen empathy for the needs of the elderly. I could tell he was uncomfortable about the fact that I was sitting while this older woman was standing. An instinctual mix of guilt, frustration and bitterness coursed through me. I stayed put. I needed the seat.
When we got back to our hotel, I broached the subject with Charley. “Babe, I don’t know for sure if that woman needed a seat or not, but I do know that I needed that seat. My legs were in incredible pain. I reached the end of my ability to stand and I wasn’t in a position to give up my seat.”
He said he understood, but I didn’t feel understood. Truthfully, I didn’t understand myself. What was happening to my body? This was the first time that I needed a physical accommodation when I wasn’t injured. Such a public need made me feel uncomfortable and vulnerable.
Over the next year, my body pain worsened and I sustained two more injuries. I needed a plan each time I left the house to make sure I wouldn’t get stuck in a physical situation I couldn’t handle. Charley designed our house so I could reach the things I frequently used without assistance. I experienced harassment in a community group because I needed to opt out of certain movement based activities. I sat on a bench during my wedding ceremony and used a wheelchair during the reception. Slowly but surely, every facet of my life became affected by my body’s limitations.
Giving up activities and missing out on opportunities has been challenging, and at times heartbreaking. But the hardest part of losing my mobility has been communicating my needs and experience to other people. No one would guess from looking at me that I can’t carry my purse, stand on the subway, climb a flight of stairs or sit on a stool. My needs are not visible, not consistent and non-standard. But over time, I’ve learned how to determine what I need in the moment and how to ask for it.
Reactions to my requests for physical accommodations routinely range from humor and confusion, to annoyance, pity and even rage. Too often, the person I’m petitioning focuses on their own comprehension of my situation rather than their ability to simply fulfill my ask. Probing and problem solving, as if in one minute they will be able to craft a superior solution for me. And meanwhile, my body and I are in need – whatever I’m requesting represents the difference between me being able to participate or having to turn back home. Keeping my cool in these moments of powerlessness can bring me to my knees.
I was raised to believe that having needs would make me unlovable, a nuisance, uncool. I spent decades locked in the trance of needlessness, denying myself and my body in order to gain the attention and affection of others. Despite the trappings of fitting in, I frequently felt desperately alone and misunderstood during these years. I packed my pain away without acknowledgement, not knowing whether it would ever get to see the light of day.
With tears in my eyes, fear in my heart and pain in my body, I have started to claim my needs for the first time . I have become who I was so afraid to become: someone who sticks out. In the process, I’ve gotten to know myself – my whole self – including the painful parts I had packed away. I’ve embraced my body as a friend instead of a foe. I’ve discovered who loves me for who I actually am, and who accepted me conditionally.
I identify as a person with disabilities because I live in a physical environment that isn’t made with me in mind. Because I live in a society that doesn’t have a ready mental modal for my body’s unique needs. Because when I join the employee resource group for people with disabilities, I find my people. Because the word disability unlocks a whole world of accommodations that I need. More than anything else, though, I identify as a person with disabilities because it makes me feel whole.