No one gets it. No one talks about the kind of grief that comes from watching everyone else live the life you never were able to. The kind of mourning that isn’t loud or recognized, but creeps in slowly, silently, until it becomes part of you.
I remember the jealousy I felt when my peers started getting their driver’s licenses. It hit me hard sophomore year. I wanted that so badly. Not just the freedom of it, but the normalcy. I wanted to be like everyone else.
I wanted to argue with my parents over curfew. I wanted to feel the thrill of going wherever I wanted, whenever I wanted. I wanted to give my sister a ride to softball practice. I wanted to help run errands. I would have loved to do those things.
But instead, I watched from the sidelines as more and more people I knew started driving. And with it came something I didn’t expect, resentment.
Not at them, but at the way they complained about it. They’d roll their eyes and say, “Ugh, I have to drive my little brother to soccer,” or, “My mom made me go pick up groceries again.” I’d just sit there, smiling, nodding, and pretending it didn’t sting.
But inside I was screaming. You don’t know how lucky you are. I would have given anything for that kind of responsibility.
Because to me, it wasn’t a responsibility to dread. It meant being part of the world. It meant being needed. It meant freedom.
That’s the thing many people don’t understand about being disabled. The things you may see as mundane, disabled people see as milestones we may never reach: driving, dating, and working. These aren’t little things to us. They’re huge, and they’re heartbreaking.
High school was tough. I watched my classmates go on dates, and get their first jobs. They were talking about buying their first car, while I was just trying to make sure I didn’t drink more than one juice box during the school day so I wouldn’t have to use the bathroom more. They were dreaming about their futures while I was quietly mourning mine.
And it doesn’t stop after high school. Adulthood brings a whole new layer of grief. People around me started careers, studied abroad, married, and moved into college dorms.
And me? I couldn’t even go to college without being reminded of all the ways I didn’t fit in. I often longed to hang out in dorm rooms and participate in the fun activities that the college offered at night. I would have enjoyed activities like trivia, cookie decorating, and movie nights. Unfortunately, my PCAs (personal care assistants) frequently rushed me to get home.
When it comes to marriage and relationships, people often have no idea that being disabled can mean losing essential income or healthcare coverage just for legally marrying someone. I had to learn that love and connection might come with a price I literally could not afford to pay. I might have to choose between survival and the kind of partnership most people take for granted.
So much of adulthood is locked behind doors I do not have the keys to. And still, I’m expected to be grateful, and make the best of it.
This isn’t about feeling sorry for myself. It’s about honoring a kind of loss most people never have to face. It’s the quiet mourning of a life that was never possible. The grief of watching others reach milestones you probably never will.
However, just because this grief is invisible to the outside world doesn’t make it any less real. The pain is still there. The absence is still there. Even if no one else sees it, I carry it every day.
Source:
LaGorce, Tammy. “Seeking Marriage Equality for People with Disabilities.” The New York Times, The New York Times Company, 25 Aug. 2022, https://www.nytimes.com/2022/08/25/style/marriage-equality-disabled-people.html.