Let’s start this column off in the most real way possible.
I’m weird. And I’m not afraid to let everyone know.
I’m not talking about my weirdly disproportionate head-to-body ratio or that I have an arm that weirdly resembles that of a chicken wing. No, the weirdness I’m referring to delves deep into the depths of my personality and my innate ability to truly bask in all of my weird glory by not worrying about what others think.
Until about my early 20s, I was incredibly self-conscious about how I presented myself in public and feared being misjudged because of my disability. It was a valid concern; I had always been a victim of people’s misinterpretations and assumptions, so I felt the need to go the extra mile to prove that I was Alyssa Silva, not just that girl in the wheelchair. This was something that I never felt sorry for myself about, instead, I was frustrated. I knew I was a good person. I knew I was capable of all things, despite my disability imposing its daily challenges. I knew I was just like everyone else, so why couldn’t others see me this way, too?
At restaurants, more often than not, when it came time to order drinks, servers would completely disregard me and look to whomever I was with for my order. Even if I was having a conversation with the person I was with upon their arrival, servers would always look beyond me to get my order, causing an awkward silence among everyone at the table until I named my drink of choice. It wasn’t the best approach to handle matters such as this, but because I couldn’t learn to forgive these people, I couldn’t learn to rise above this.
My favorite anecdote that captures the epitome of this kind of ignorance happened while I was at a Chinese restaurant with my brother. We had gone there for some sibling bonding, and all I really wanted was a Shirley Temple. Just because I was of the legal drinking age didn’t mean that I couldn’t relish in the refreshing flavor of a favorite childhood beverage. All I wanted was to pack in the MSG that all great Chinese places serve and wash it down with a sugary drink to make my stomach hate me even more.
When the waitress returned, in her hand was a sippy cup that was placed in front of me. Baffled by what was right before my eyes, I stared at the drink then shot a look at the waitress. Audaciously, she smiled and walked away. The sippy cup remained.
For a moment, I tried giving her the benefit of the doubt. After all, maybe she just thought it’d be easier for me to drink. But, then again, there was this really cool invention called straws, which I know the restaurant had plenty of because there was one in place in each restaurant patron’s water. If a sippy cup were needed, I would have simply asked for one.
There was no excuse for this kind of assumption. But, again, someone’s misinterpretation resulted in me feeling incredibly furious and giving everyone around me yet another reason to stare at the girl in the wheelchair.
I felt defeated that day, but in hindsight, the only person to blame was me. I don’t know when the turning point occurred or why it did, but I finally learned not only to stick up for myself, but also to set an example for people with disabilities who deserve equal respect along with their able-bodied peers. If people just took a step back to consider their words and actions carefully rather than jumping to conclusions, there would be more acceptance in the world.
I came to terms with this a couple of years ago. I was so fed up with the way these strangers treated me until suddenly I realized I needed to cherish those who accepted me and forgive those who rejected me. At the time, I was so caught up in trying to validate who I was for others that I failed to recognize who I really was as an individual. I failed to embrace my true inner weirdness.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.