If you’re new to this series, I recommend beginning with Part 1
The words we use to describe our chronic health condition aren’t just words, they are bridges to connect us with others, tools that help us get what we need, and sources of power that give us strength to carry on. They can also be markers of shame and walls that separate us from others. This is the second in a series of posts exploring different meanings of the controversial word "disability". I hope it expands how you think about your chronic health condition and helps you feel more confident talking about yourself.
Because 20-year-old me didn’t have a diagnosis and didn’t know anyone else the same age going through a similar struggle, I didn’t have the words to easily explain my health condition to others. Joining the Disabled Students Program (DSP) in college changed this in a big way. Instead of launching into long, rambling descriptions of the “weird pain thing in my wrists” every time I needed a stranger to open a heavy door for me, I began to simply refer to my “disability”. I quickly found that the word allowed me to communicate my needs to others more clearly and concisely. This, in turn, gave me more confidence to talk about myself and ask for help.
Problem solved, I thought.
But that wasn’t the case. I soon discovered that the word “disability” was more polarizing than I realized.
The first time I referred to “my disability” in front of my mom, it did not go over well. I was home from college on a medical leave of absence and she was helping me fill out an online form because my pain was too intense to click or type. The form had something to do with my leave of absence, and in the course of dictating responses, I referred to “my disability”.
The second the words left my lips, my mom stopped typing and hardened like a shell. I could feel an intense emotion blowing out of her like steam. I don’t remember her exact words to me, but I’ll never forget their sentiment: she was shocked and disappointed by the label I used.
I was also shocked and disappointed. Saying “disability” was new for me. I wasn’t comfortable enough to bring it up with friends or extended family, but I thought it would be safe to do so at home. My mom is, without exaggeration, the kindest and most compassionate person I know. I had only ever received unconditional love and support from her. Her palpable aversion to the word “disability” felt like a rejection. For a sensitive creature like me, this small moment rocked my world. Over 10 years later, I can still feel the current of those emotions.
What I now know, but didn’t perceive then, is that what I’d said is not what she’d heard. My mom understood the word “disability” as its literal meaning: a lack of ability. Because she didn’t think that people with health conditions were “less than” other people, this made it demeaning. It was a dirty word.
Also, my mom wasn’t angry at me, she was afraid. She didn’t believe that my health condition should dim my dreams, so when I used that word it sounded like an admission of inferiority. It sounded like I was permanently giving up on myself.
As it turns out, a lot of people see the word “disability” this way. To this day, there are still folks who shudder when I refer to myself as a “person with a disability”. Others are openly confused as to how that could be when I live independently and have a successful career (It would be disingenuous to omit the additional factor that I “don’t look like I have a disability”, but that is a topic requiring its own series of posts).
When I ran an educational program for children, many parents would come in to talk to me about accommodations for their kids with autism, diabetes, and ADHD. If I referred to their child’s “disability”, many of these parents appeared offended or uncomfortable. This confused me. I was clearly advocating for their child’s inclusion, so why were they offended?
This reaction is understandable, if you only take the word at its literal definition. From this viewpoint, using the word “disability” designates someone as “less than able” or straight up “unable”. It denies their inherent capability as well as their potential. It’s a word that closes doors and places limits on someone’s life.
But here’s the thing… the meaning of “disability” goes far beyond the literal definition. It’s complex and has legal, political, and cultural layers that are actually empowering!
In the upcoming posts, I’ll dive into each of these three realms. Stay tuned!
Read on for Part 3 of this series!
Do you want to gain more confidence in talking about your chronic illness?
If so, I can help.