I have a complicated relationship with my disability. Some days I feel like I’m mostly accepting of it. I’ve figured out how to best navigate my environment and listen to what my body needs. It’s easy for me to shout with joy about the pride I have about my disabled identity. I feel like my disability has made me stronger in a way where I can voice my needs more without worrying about what other people will think or say in response. I feel happy to talk about my disability with people and hope to educate them by sharing honestly and openly about my own experiences.
Sometimes I think I push the “I’m a disability advocate hear me roar!” agenda so much, that I sometimes forget to self reflect and sit with my own emotions- emotions that aren’t always positive.
Sometimes I feel like I have no right to be sad or angry about my disability because I should be proud and accepting of who I am. I feel like I should look in the mirror, strike a pose, and say, “it’s go time baby!” to my reflection. But today I stare at my reflection in the front face camera of my phone and see myself frowning back at me. There’s a tense expression on different parts of my face- a set to my jaw, the wary look in my eyes, defeat that sags my shoulders. I come to the realization that I’m tired. Today I’m tired. And today I feel resentful towards my disability. Today I think I hate it.
Today I hate the way I feel like it is limiting me, holding me back from accessing the world and the people in it. Sometimes it feels like I’m a fish inside a bowl. Like I can see the world spinning around and people talking and laughing and living their lives, but it’s like I’m just watching and falling behind.
I get frustrated as a disabled person that people I encounter or sometimes even my workplace doesn’t understand. But I know that I would be a lot happier if society was made more accessible and people had a better understanding of what disability really is- not what they are fed through the media.
I’m struggling at work and feel like I can’t keep up. My job involves me interacting with people, and it’s more difficult than I anticipated it to be. I hate to admit that there are times when I think to myself, “gosh I would be a lot better at my job if I wasn’t disabled.” And today I fantasized what it would be like to be like everybody else just for 24 hours. I wasn’t born with my disability, and today I fantasized what it would be like if I never became disabled or suddenly found myself no longer having one.
I haven’t given a lot of thought to my own internalized ableism until I read Disability Visibility: First-person stories from the twenty-first century. Disability Visibility is a collection of essays written by disabled people compiled into one book. Each experience was something I related to or learned from. Each story resonated with me. Each story made me feel less alone. I felt validated in how I experience both disabled joy and grief as I hungrily devoured essay after essay.
Grief is an ongoing process, I’m learning. I also have to give myself grace and compassion when I feel this way. Some days will be difficult, and that’s okay. Since we know what hard days and good days look like, the hard days are reminders that there are better days and things to come. My favorite things to do after a tough day are to phone a friend, read a book, or watch some TV. It’s always encouraging to know that I can go to sleep and wake up the next morning and try again the next day.
Disabled joy is very real, but so is disabled grief. I’m still learning that both can exist and regardless of which one I feel on a certain day, I will be okay.