Someone, someone who I look up to and admire, said to me the other day "You need to take your story back. Tell it in your own words." Initially, I brushed it off. However, this person, Kathleen, has a tendency to say things that stick with you. So, because of that, I am going to tell my story, in my own words. You may be wondering why I am doing this. I am doing this because my mother loves to tell everyone what a "miracle" I am. She loves to tell people all the things that I went through when I was young. She tells these stories to everyone that will listen and I absolutely hate it. When you have a disability, unfortunately, there are three things that can happen when people hear your story. 1. They think you're a precious miracle from heaven. 2. They pity you. 3. They appreciate what you've gone through and see how far you've come. Number three rarely happens. So, for that reason, I am going to tell my story. Because, if one more person says I'm a miracle, I may lose my mind.
I want to preface, this story by talking about disability pride. In the disability community, there is such a thing as disability pride; the pride of having a disability. And there seems to be a stipulation in our community that everyone must feel that, and if you don't, you need to be taught to feel it. There are many people that are proud to have a disability, and that is great, amazing. I am not one of those people. I'm not ashamed of it either, but to me, it just is what it is. I believe in predestination. I believe that our spirit planned exactly how our lives would pan out before we lived them. So, to me, having a disability is just part of the plan for me in this life. It's like being gay, it's predestination. But, no, I don't feel pride for having a disability. Now, why am I prefacing this? Because I fear that there are some people in the disability community that will take offence to that, and I just want to explain why I, personally, do not have disability pride.
Ok, here we go...
I am visually and hearing impaired, as most of you know so let's skip that part. I was born with a syndrome called CHARGE Syndrome. It stands for Coloboma, Heart defects, Atresia choanae, Retarded growth and development, Genital abnormalities, and Ear abnormalities. I was born with three heart defects and had open heart surgery to repair them when I was very young. I also have abnormal ears, floppy ears. I did have breathing issues (atresia) when I was young and was on both ventalin and oxygen. When I was young, I also had problems swallowing, I use to have to drink thickened beverages, which were mostly disgusting (except the chocolate milk which, of course, they stopped making!) I also had a G-tube up until I was eighteen. When I was very young, I had to be sectioned as well due to issues with my lungs. I was also born with a clubbed foot, which was corrected when I was young. I also died for a few minutes when i was a baby, however our neighbors saved my life, thankfully
I'm sure that I am missing some stuff, but to me, that isn't the story. The story isn't about the struggles I went through as a child. It isn't about the problems I had as a baby. It's about the fact that I overcame it. It's about the fact that I got through it, and that I am the person I am today. I always say the hardest things we go through in our lives are the things that make us the strongest. We are all here to learn something, to be taught something. But the only way we are going to learn new things, is by looking forward, not looking back. The past has already happened, we cannot change it. What we can do, what we should do, is learn from it, and use what we learnt to make tomorrow better. I can't change what has happened to me in the past, but I'm still here, which means I have the ability to make tomorrow better than yesterday. We all do.
To learn more about CHARGE Syndrome please visit:
https://www.chargesyndrome.org/about-charge/overview/
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