DISCLAIMER: I have spoken to Jake about the content of this piece. He has given me permission to discuss his personal struggles. Jake, I, and the rest of my family, hope that by sharing Jake’s story we can make life better for all those who face these kinds of hardships.
Jake McDonald was born on a cold autumn night, roughly four years prior to my entrance in this world. From the instant Jake sprung into this world, he faced many severe challenges and inhumane hardships that the vast majority of people will never face or even ponder the consequences of, the largest being a syndrome called 22q11.2 Deletion Syndrome, also known as VCFS or DiGeorge Syndrome, in which part of the 22nd chromosome is missing. The resulting consequences of this syndrome are strikingly similar to autism, in which those affected experience mental symptoms like developmental disabilities. However, what sets VCFS apart from autism is the resulting physical symptoms, such as a high chance of those affected being born with a cleft palate or lip. Jake was born with a cleft palate, and thus faced surgery as he grew into a toddler. I’m not a medical expert, so I don’t fully understand exactly what happened, but Jake’s surgery for his cleft palate had gone wrong. He then faced plenty more surgeries, probably around ten, just to make up for this completely avoidable error. The photo albums of us growing up are embedded with photos of Jake in various hospital settings and hospital clothing. By now, my parents were often crossing state lines with Jake in search of the best doctors, which meant I was at home with my grandparents. Being so young, no older than four, I don’t think I understood why my parents and Jake were gone so often and for so long, and it’s difficult to remember those times. I knew they were seeing doctors, but that was about it. Naturally, I missed my parents and Jake a lot, and I wanted my older brother back home so we could play with Godzilla action figures.
As one would imagine, Jake didn’t necessarily have a “normal” time growing up. Having such noticeable developmental disabilities, it was almost impossible for him to make meaningful connections. He had a childhood bully from kindergarten until around third or fourth grade. He would utterly terrify Jake. It continued on for a bit, but he just ended up moving away. Even though Jake is older than me, I’m more cognitively able than him, so I’ve always accepted the role of being the bigger brother. With that being said, this is the earliest experience I can remember in which I’ve felt an uncontrollable urge to protect Jake. To say I was furious would be an understatement. This set the stage for my attitude toward my role as Jake’s brother: being angry, paranoid, and defensive. I really didn’t believe anyone had his best interest at heart, and I jumped at the opportunity to confront anyone who dared do anything I deemed wrong regarding Jake.
I still feel that burning desire to constantly watch over Jake every day. Nothing provokes it anymore; this is just the default way I protect my brother. He works part-time at a grocery store, bagging groceries and returning carts. He can’t drive, so I’m often driving him to and from his work. Whenever I’m dropping him off I worry about how others may perceive him during his shift. I’m always worried that somebody may behave rudely toward him. Whenever we’re out in public, I’m always concerned of how others are looking at him and how they may act toward him. However, even though this matter concerns me plenty, it doesn't bother Jake at all! He couldn’t care less about how people perceive him! What Jake is truly concerned about is having someone to call a friend, someone to play video games and discuss history with. I do my best to calm my worries about the public’s perception of Jake and focus this attention on being the best brother I can be to Jake. These misplaced worries in Jake’s life taught me a fundamental lesson in Allyship: the importance of listening to people and elevating their voices rather than speaking for them. Jake didn’t ever enjoy the confrontations I would get into; he never cared about them at all. I really wasn’t helping anyone; I was making the whole situation worse. Granted there were times when somebody was doing something to genuinely wrong Jake, and in these scenarios I’m glad to become confrontational; however, this wasn’t the majority of the cases. The outcome would have been much better for the majority of these scenarios if I had respected Jake’s wishes instead of imposing my own sense of morality.
Being born into the role of being Jake’s brother has shaped every aspect of my life. It’s required me to take on the “big brother” position. This has caused me to want to speak for Jake, to be the one to decide what he wants and what he needs. It took me a while to learn that this isn’t the best way to be an Ally. I genuinely try to listen to Jake because I really just want him happy. I’m no longer in the front seat. I ask Jake questions now. Real questions, not questions where I disregard the answer in favor of my own answer. I feel that elevating the voices of those we wish to help is always a great starting place in giving any sort of assistance. Without this, one runs the risk of creating problems in areas where they wish to help.
Ian graduated from Michigan State University in 2022 with a Bachelor’s in Philosophy and is currently pursuing a Master of Communications at Western Michigan University. Social Justice and Political Activism is what drew him to philosophy and remains a key part of his identity as a philosopher. "If I can improve one person’s life in anyway, my philosophical endeavors have been successful".