What it Means to Have Disability Pride
How can you have pride for something that causes you pain, struggle, and can exclude you from doing some of the things you love?
This is the paradox of Disability Pride.
At the age of five, I was diagnosed with Retinitis Pigmentosa, a degenerative retinal disease that causes me to lose my peripheral vision over time. It also causes me to have night blindness, extreme sensitivity to light, and may eventually cause me to lose all of my functional eyesight. At the age of 15, my ophthalmologist told my parents that I was legally blind and that I would never be able to drive a car. On the exterior, I acted like everything was fine, that I didn't care about my gradual sight loss, and now, blindness. But beneath the surface, I was so afraid.
I constantly questioned:
"Who will want to marry a blind man?"
"How will I remain employed if I can't see?"
"How can I fulfill my dream of being a father if I can't see my future kids?"
"Will my friends and family continue to support me as my vision loss progresses?"
"Who is going to be there to take care of me?"
I remember two clear breaking points in my sorrows.
The first came in college. I was having girl trouble, and I remember lying on the couch in my college apartment- I was absolutely bawling my eyes out. I wailed aloud "I DON'T WANT TO BE BLIND." I was so worried that the issues I was facing were directly because of my vision loss. Of course, I was wrong- but it didn't feel that way at the time.
The second breaking point came just after I graduated college. I was back home at my parents and my mom suggested that I should get a disabled parking permit. I quickly turned to her and said "But, I'm not disabled. I can't get one of those, Mom." She then explained to me that I was disabled, and it was nothing to be embarassed about. I remember sitting there feeling completely dumbfounded. Not once had I ever considered myself to have a disability.
Over time, I began to realize that by hiding from my disabled identity, I was disabling myself from living a full life.
This is the truth that I've come to find on my journey to acceptance:
I feel independent and free when I use my blind cane.
I feel empowered and grateful when receiving an accommodation that I've advocated for.
I feel seen and connected when I meet a fellow member of the disabled community.
To be disabled is to live in a constant state of complexity and challenge, and those challenges bring me a sense of accomplishment, fulfillment and pride unlike anything I've ever experienced before.
To me, having disability pride means:
You're willing to be open and talk about your disability and the unique struggles that come along with it.
You admit that you need help, and ask for support often.
You understand that having a disability does not make you a burden.
You openly ask for accommodations and utilize the mobility tools you need.
You celebrate your disabled identity, knowing that it adds value to your life, and to those around you.
One of the strongest things you can do is be honest about your struggles. Be vulnerable! Be confident in what you are facing.
You don't need to hide that it's hard in order to "be enough" or to show others that you're "strong."
Be true to yourself and be true to your disabled experience—there is no greater way to show your pride for your disability.
Happy Disability Pride Month,
Charlie