“Disability. It’s a word that catches me off guard every single time I hear it or read it. The prefix of dis- means can’t and not. But this is so wrong. I know I can’t change a word that has been put in a dictionary for quite some time. But I can try and change our words for the better.
Everyone is able in some way, shape, or form. Everyone. Everyone has value and is worth it. Everyone deserves a chance and place in this world. Everyone deserves to be treated kindly and respectfully. Every. Single. Person. No matter their abilities. No one deserves to be called ‘broken,’ ‘dumb,’ or ‘ret***ed.’ I’m waiting for the day where people realize those words are not to be used to describe a person. No one deserves to be stared at or purposely left out. I’m waiting for the day where everyone is kind, understanding, and respectful. I wish this day would come faster.
3p 22.1 – 24.2. These are the numbers that changed me and my family’s life. I was 19 months old when Jack was born. My parents found out about Jack’s deletion six days before his birth. He was born six weeks early with a chromosome deletion of a portion of his third chromosome. He was and still is the only documented person in the world with his exact deletion. He stayed in the NICU for six weeks while doctors worked to wean him off oxygen and figure out how exactly to help him thrive through certain medications and therapies. After all, no medical professional had dealt with this specific case before. There was no information that perfectly aligned with Jack’s case.
Although I don’t remember much from when I was little, I do vaguely remember peering through the NICU window to see Jack. It didn’t matter to me Jack was not ‘neurotypical,’ all that mattered was I finally had a little brother and that was just about the most exciting thing. As time went on, I learned Jack is the funniest and happiest person you will ever meet. He lights up every room and puts a smile on everyone’s face.
Fast forward to when Jack was ten. We went to the same school and I walked him and picked him up from his class each morning and afternoon. This was the year when I really started to hear comments from people about Jack and about me being his sister. The words ‘broken’ and ‘ret***ed’ were thrown around as if it was okay to use to describe someone. The comments about how I was ‘the broken kid’s sister’ and ‘he didn’t go to real school’ because of his different abilities circulated. I was heartbroken. I never thought people would judge and just be rude because he was different. The truth is, the majority of the time when people make those rude comments, they don’t know. They don’t understand. They make assumptions and rude comments to somehow make themselves feel better, superior.
Being the sibling of someone with special needs makes me feel like I have matured faster than I would have if I hadn’t lived with this experience. Sometimes, I feel like I have missed out on a bit of things as a kid. I have more responsibilities and have been taught what to do in his medical emergencies. At the age of 15, I know what to do if anything were to happen. I know how to give injections if needed. I know what to tell an EMS dispatcher about his deletion. At the age of 15, I have had multiple conversations with my family about what happens when Jack is out of high school and what happens when my parents can no longer help take care of him. Things like do I take over custody in the future? Should my future house have an extra bedroom and bathroom for him? How can we help him while fostering independence? Where could he work? Things your average 15-year-old wouldn’t have to think about are the things that go through my head on a daily basis.
Living in a society where not everyone is related to or experiences life with a person with different abilities is hard. There are people who tell my family and myself things like, ‘This must be so hard’ and ‘I don’t know how you deal with this.’ The truth is, I don’t deal with it. I enjoy it. I was 19 months old when he came into the world, so I know no different life, but the truth is I wouldn’t have it any other way. Jack has shaped me into who I am today. He has matured me. He has taught me more about people and society. I have learned so much medically. I have learned how to stand up for Jack. I have learned how to have hard conversations. I have learned how to tell this story and to never stop fighting for kindness and respect for people with different abilities. So yes, it is hard. But it is so worth it. I just keep on keeping on, spreading awareness, and loving my brother no matter what.
There are hard parts that can’t be ignored. When Jack cries, it’s heartbreaking. When I have to tell someone to stop being rude or stop staring, it hurts my heart a little, too. When something scary happens medically, my mind and my heart have no idea what to do or what to think. The first time I remember seeing an ambulance pull up in our driveway, I was 2.5 years old. All I remember was the big, red, flashing lights, the paramedics coming in, my mom carrying my brother out, and me standing there, scared, having no idea what was going on. But, there are the good parts that just make up for it all. The belly laughs. The screaming songs at the top of our lungs. The arm wrestles. Eating ice cream without telling mom. Racing around the house. Playing hockey together. I will forever be his sister and his biggest supporter and advocate. I will forever stand up for him and spread awareness. I will never stop fighting for him or loving him.
Some people will still stare. Some will still say rude comments. Some will continue making fun of our family. Some won’t work to understand. Please don’t be that person. Jack is able. He can walk, he can talk, he can laugh so hard he makes other people die laughing with him, he can hold a full conversation just about sports, he can push around myself and our other brother. Jack is able, even if he is behind in some things or needs a little assistance here and there.
Lastly, all I ask of you is just 3 things:
1. Be kind. Just be kind. It’s simple. You never know what is going on in someone else’s life and making premature assumptions doesn’t help anyone.
2. Don’t stare. It is possibly the worst feeling to see someone staring at Jack and my family.
3. Ask questions. Learn. Work to understand. Even though you may never understand what it’s like to live with someone and care for someone with different abilities, you can learn. You can spread awareness. You can be an advocate. You can always do something. And please, please, please, if you have a question, ask. Ask it nicely. But ask. Asking questions and learning is WAY better than making assumptions.”
This story was submitted to Love What Matters by Claire Rothering of Middleton, WI. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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