I had a realization the other day. I realized that my son’s disability has significantly and profoundly changed everything about how I think and what I do.
I’ve fought this awareness for a while, and the thing I had to ask myself was, “Is that so bad?” Sure, I don’t want my son’s disability to be the only thing that defines him or us, but what is wrong with having a disability as a defining characteristic? Why did I associate disability with being a negative thing instead of just being a thing?
The truth is that my son’s disability has defined us as a family. We take it into consideration with almost every decision we make. It has changed the language that we use. It has changed every single assumption about our family and about ourselves, but not negatively—but rather, stuff is just different.
We are deeply ingrained in disability culture. When you come to our house, you see all sorts of medical devices. Half of our toys have some sort of therapeutic benefit to them. Disability isn’t just a hat we wear, it is part of the way that we view the world.
So yeah...disability does define us. And I’m proud of that. I’m proud to be the father of a kid with disabilities because it doesn’t mean broken. Disability doesn’t mean deficient, it just means different.
My son sees the world differently than anyone else. And I’m proud as heck of that. My other two kids are growing up to be critical thinkers who aren’t scared or intimidated by people who look and act differently than they do. They’ll grow up being the kids who reach out to kids with disabilities because that’s what they’re familiar with. And none of that would have happened without my son having a disability!
So, I think I’m done saying things like, “Well, we don’t want to be defined by my son’s disability.” I’m through fighting this identity that I should be embracing. Disability is a defining characteristic for my family, and it has made all of us--myself, my wife, and my kids--stronger and better people. We would not be as resilient or as caring without my son’s disability.
My goal in life now is to let others know that disability is not a bad thing, and we as parents of kids with disabilities are not to be pitied…and that starts with how I myself integrate my son’s disability into our family identity.
Information about parenting children with disabilities can be found in the Family Support pages.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.