The words we use to describe our chronic health condition aren’t just words, they are bridges that 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 separating us from others. This is the first in a series of posts exploring different meanings of the controversial word "disability". My hope is that it will expand the way you think about your chronic health condition and help you feel more confident talking about yourself.
I'll never forget the first time someone associated that word with me.
It was the beginning of the semester and I was finally back in college after a long medical leave of absence. Despite all the time off I’d had to focus on my health, I hadn’t made as much progress as I’d hoped. I still had huge unexpected “flareups”, I still couldn’t write or type at all, and my doctors still had no explanation for any of it. Afraid that I wouldn’t make it through the semester, I was meeting with a professor to explain my unusual medical condition and request alternative ways to complete assignments.
I went in confident, but midway through the conversation I began to lose my bearings. I realized that I was rambling and repeating myself. I even burst into tears at one point. Describing my health condition to a stranger when I myself didn’t understand it was like running in circles. I felt like a mess.
Did any of this make sense? Would she believe me? Was my crying freaking her out? Does she think I’m too “high maintenance”?
After my long, convoluted monologue was over, my professor surprised me by immediately responding that she would be happy to work with my needs. There were no follow-up questions and no skepticism. Then she said something even more surprising: Before working out the details for my alternative assignments, I should first get registered with the Disabled Students Program (DSP).
My first reaction was confusion. It was the feeling you get when you’re out in public and someone wearing headphones begins talking and gesticulating in your direction. You can’t tell if they’re talking to you or on the phone with someone else, so you just freeze and wait for something to happen.
DSP? Was she talking about me?
The word percolated through my conscious mind. After a few puzzled moments, I determined that she had indeed used the word “disabled” in relation to me.
The confusion remained. I knew where the DSP office was, but I didn’t understand what it was or how it had anything to do with me. The people I saw going in and out the front door had wheelchairs, canes, and guide dogs. I didn’t have the words for it at the time, but I was filled with an unexplainable sense that I was not like “those people”. It’s painful to admit it now, but I saw the other DSP students as inherently different, whereas I was just a “normal” person who happened to have a weird health issue. The word “disabled” also frightened me because it had the connotation of ugliness and shame.
But all of those thoughts quickly changed.
As soon as I left the professor’s office, I called the DSP and a few days later I entered a whole new world. First, I was matched with an advisor who had a repetitive stress injury in her wrists, just like me. I had never met someone with a condition like mine. For the first time ever, I didn’t have to explain myself. She already understood. She didn’t ask unnecessary questions, and she didn’t say dismissive things like “You’re young, you’ll get better soon” or “Have you tried meditation?”
Official letters were sent to my professors detailing what adjustments to the course requirements I needed and my advisor would back me up if anyone resisted. Note takers were hired and paid for by the University to record the key concepts from class that I couldn’t write down myself. Referrals were made to other programs and government agencies that could offer me additional resources.
Most importantly of all, the DSP gave me access to an assistive technology lab filled with devices and software that I didn’t even know existed. These included speech recognition software, foot-operated computer mice, and high-tech pens that take audio notes. Because of the chronic pain in my wrists, I hadn’t been able to operate a computer, which meant no email, no social media, no Internet browsing, and certainly no essay writing. I was dependent on other people to get even the most basic digital tasks done, so I had little hope that I could graduate college or get a job. The technologies I learned about in the lab changed the game. They were my first step to independence.
The head of the lab was a blind woman who laughed uproariously, cursed even louder, and welcomed me into her world unconditionally. She knew a thousand ways to get things done without using your eyes or hands and spent countless hours teaching me. Along with my advisor, she changed everything I knew about who “those” people with disabilities were.
Two years prior, my health had deteriorated suddenly. It was an avalanche that kept picking up speed and force, taking out everything in its path. I didn’t know how to stop it or when it would end. I was back in school after one and half years sidelined at home trying to get better and still the future looked bleak. I was buried, but my first week at the DSP was like finding a pocket of air. It was the first moment that the mountain of snow pressing down on me began to give way. I still had a long road ahead and it would be arduous, but now I had information, tools, and guides. I had new possibilities that had never been available before.
As it turns out, the Disabled Students Program was made for people exactly like me.
Read on for Part 2 of this series!
Do you need resources and role models to help you manage your chronic illness?
If so, I can help.