Growing up, I never heard anyone use the term disabled.
I heard about “special needs” kids, but that was reserved for children with intellectual disabilities. The other kids who had chronic medical conditions were just “sick,” if we got to see them in the world at all.
The women in my family with lifelong orthopedic struggles weren’t disabled, they just had “bad hips” and needed canes.
So it probably shouldn’t be surprising that I didn’t realize I part of the “disabled” community until well into my adulthood.
Let me be clear: I knew I had a life-altering degenerative hip disease that affected my mobility. I knew I had multiple surgeries in the past and will likely require more in the future. I knew I had chronic pain and that my prosthetic hip set off alarms anytime I got close to a metal detector.
But I didn’t realize there was a term for all of that until I was an adult. I just always thought of it as my “bad hip.”
It wasn’t until I had a daughter with her own disabilities that I began to delve into what it meant to be disabled.
I wanted her to have something that helped capture her struggles, her unique position in life, and be able to have a sense of pride in all of it. I wanted her to have a group of peers who could relate to her experience. I wanted terminology that would help us advocate for her rights and needs. But I had never considered how I might need all of those things and how I could find them in this community too.
Even after this revelation, it took a moment before I was comfortable calling myself “disabled.” I dipped my toes in tentatively. I’d say “I grew up with a disability” or “I have some mobility limitations.” Anything to still distance myself from embracing the identity fully.
I recognize the inherent privilege in that: never quite fitting in with my non-disabled peers as a kid, but not being “too disabled” that it was impossible to navigate the able-bodied world without accommodation. (The trade-off was just physical pain instead.) I could live in either world. I could mask and navigate where and when I needed to, which is a reality not afforded to many disabled individuals.
I also recognize the internalized ableism that kept me from wanting to call myself “disabled.” My hesitance was borne out of many facets: fear that I wasn’t disabled enough, fear that those in my world would think less of me if I embraced that aspect of myself, fear of making myself seem like a victim, just… fear, broadly, of embracing a marginalized identity in a world that craves assimilation.
But, in the midst of my identity crisis, it occurred to me:
How could I possibly expect my daughter to have pride in her identity, to embrace herself fully, if I couldn’t do the same for myself?
How could I foster her confidence and self-assurance if I had none of my own? How can I be the best ally for her if I can’t even embrace my own experience?
Because the truth is, I am disabled.
Even now, the physically strongest and healthiest I’ve ever been, I do not navigate medical systems the way my peers do. I have physical considerations and limitations that my peers do not. I have medical trauma and pain and medical anxiety that many women my age have not had to engage with.
And these facets have all undeniably shaped my life, the way I navigate the world, and the way I relate to my own daughter’s experiences. Disability has impacted every aspect of my life.
This does not mean that I have to make my voice the loudest in the disability discourse. It doesn’t mean that my experience can speak for every person who has ever navigated disability. It doesn’t even mean that I have to spend all of my time investigating disability identity and nuance.
But when some one asks “Do you have a disability?” I can say yes, without hesistance and also without the need to explain myself.
When medical professionals question my rationale for decisions regarding my daughter’s care, I can tell them that not only do I know my daughter, but my own experience with disability gives me a more nuanced perspective than they’ve considered before.
And when people wonder what it’s like to grow up as disabled and navigate chronic pain as a child, I can explain it to those interested to listen.
Disability does not diminish me. It does not diminish my daughter. It is simply an unalienable truth about the way we experience the world.
I am disabled, and embracing that reality has made me a better mother, a fiercer advocate, and a stronger person, even if it took me a lifetime to get there.
