This blurry photo from six years ago still brings tears to my eyes. Throughout my 24 years with this disease/disability and its challenges, I’ve asked very few people to make accommodations for me. I’ve rarely spoken up about my limitations. I’ve sparingly sought to modify a rule or standard for my own benefit. Why? Throughout my lifetime, most people have refused to meet me where I’m at and make accommodations for me. This blurry photo depicts just one of those stories.
When my doctors needed to put permanent drains back in my arm, I panicked. I was just a few weeks away from attending a leadership convention where I would run for a sought-after office. Candidates for each office were required to wear a suit at convention. How would I put on a suit jacket with drain tubes coming out of my swollen, agitated arm? After my mom and I brainstormed ways for me to still look professional without a suit jacket, I emailed the organization and explained my problem and solution.
A few days later, the organization said I needed to wear a suit jacket. They thought most people would have understood my situation, but they were worried I would be discriminated against for breaking a rule. And yet, they refused to amend the rule or ask others to understand the accommodation.
In that photo, I’m wearing a scarf to hide my drain tubing. I’m carrying a small backpack that’s holding the drains. My hair is down in order to disguise the backpack. The ensemble was painful to wear, but I was worried I would face discrimination if I didn’t hide what was going on in my body.
Most of us read that story and get mad at the organization. We point the finger at them and say, “Shame on you!” But the shame is on us. We fail to give grace, especially when giving grace may benefit someone else. We tend to judge and even punish others when we assume accommodations will put them ahead of us. Rather than adjusting our rules, we make people either adjust to our standards or stop trying to meet them. We want everyone to jump through the same hoops in order to be “fair,” but our hoops are often more exclusive than inclusive. Perhaps we ought to consider adjusting our hoops instead of asking others to adjust.