I tend to avoid politics here because this blog is intended to create awareness and share our story living with CDG-PIGN. Strong political opinions don't tend to mesh well with the open minds needed to learn. However, AJ's running buddy shared this story today, and it resonated with me.
You might be confused. My children inherited my pasty white skin. There's no reason I need to worry about my child being perceived as a threat because of their skin color, regardless of their intentions and the facts surrounding a situation. But every mom whose child has a skin tone other than pasty white likely has that worry, that their child will be judged in a split second based on decades and centuries of stigma and racism that may lie just under the surface even if it's not blatant. Will their child be perceived as a threat because he's out running? Because he has a cell phone in his pocket that he grabs? Because he is taller than someone? Because his skin is not white?
Still confused on why this resonates? Let me clarify. I don't worry about AJ ever being perceived as a threat. But let me paint a picture for you .... in another decade or two, Teddy will be a big guy. I don't expect he'll have the safety skills to be alone in the community, but I can see him still taking off for adventures. So maybe he goes outside unnoticed, wanders into someone's open garage door because that's an open invite and that someone calls the police. Teddy doesn't listen to the police's directions, doesn't answer their questions and ends up handcuffed or worse. Or maybe Teddy's outside walking, still with a gait that looks like he's had a few too many, and he doesn't heed the police's direction to stop. He approaches them, stumbling slightly, arms out for balance (or wait, is that a threatening move) and grabs at them to take their hand (or wait, is he going for their gun).
These might seem really far fetched, like I've spent too much time with my own imagination. But these are similar to headlines of people with mental illness who weren't able to follow police instructions or people with disabilities who were struggling to maintain appropriate social behaviors. These headlines are rarer than the racial ones. But they give me a tiny bit of perspective into what other moms with different skin tones might fear.
The point is that no mom should have this fear. No person should be afraid to wear a mask in public to ensure their own health and that of their community. We need to do better. All of us. No excuses for the older generation, no more small mindedness, no more indifference. We need to stop blaming others and calling for change in others without taking a hard look into our lives to see how we can do better. What are the biases we hold? What are we teaching our children? How can we change ourselves to start changing our world?
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Wednesday, May 27, 2020
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