I literally JUST had a dumb exchange/fight with a stupid person on Facebook about the term "disabled". The guy was trying to tell me that the term "special needs"is the best way to refer to someone with a disability. This dude isn't disabled, nor does he have disabled children. He said that as a special education teacher, I should have known better.
I sort of hate that term, by the way. Special education. As though my disabled students' school experience is SO different, so "other", than that of the other students, that it needs its own name, when really we are just doing school, off in our little corner of the universe, separated not by our choice but by a system that doesn't value kids like them, that won't be flexible enough to include them.
ANYWAY, I digress. The thing that I was trying to explain to Dumb Facebook Guy is that thanks to some really influential and outspoken adults with disabilities, both people I know in real life and people I follow on the internet, I've been introduced to a new perspective on the word "disability". A perspective that makes a lot more sense to me than the one that most of us are used to being force fed. Especially now that I'm raising two beautiful boys who have disabilities. Especially because of that.
The fact that people get offended by the word "disabled", the fact that they think of it as a negative term...for a really long time I never thought about why that was. I never thought to ask a person who WAS disabled how they felt about it. There was a time when I thought of disabled people in an "us and them" type of way. I hate that that's who I was, but I can't pretend. I knew disabled people, people I worked with as a volunteer, or kids I babysat, but I didn't have disabled friends. I didn't actually LISTEN to disabled voices.
But better late than never. I'm listening now. And what I'm hearing makes a lot more sense than what society and pop culture and the media always wanted me to believe about the word "disability".
Disabled means unique. Disabled means someone who is living a life in a society that doesn't meet their needs, but choosing to thrive in spite, and BECAUSE of that. Disabled means a body, and sometimes a brain, that feels things and sees things and processes things differently than the majority of bodies and brains do. Disability=divergence from the norm and that divergence is vital to our world. Disabled people make up a crucial part of the spectrum of what it means to be human.
When I first became a mom to a disabled son, I thought that as time went on, people devaluing my chid would hit differently, would hurt less. I thought I would get used to the pity, the "poor you" comments, the "it takes a special person"-s and the "I could just never do that"-s. I have been on fire with love for my disabled son since the day I met him, and I naively thought that I could take that love and transmit it to others around them, make them see what I see.
Didn't they see him, with his wide open smile and unseeing but oh so beautiful eyes, his exploding laugh and grounding presence, his spontaneity? Didn't they want to crawl inside his fascinating little brain just as much as I did, to figure out where that undefinable spark, that contagious FLAME of joy and live-in-the-moment-ness was coming from? Couldn't they feel it?!
It turns out that it never gets easier to take, or to understand. The way that so many can look at my disabled child and dismiss him as too different, too much, a burden. The type of child that they would never, ever want for themselves.
And with the baby of our family, his adoption is still unfolding so I'm limited in what I can say but man...it's just so hard to believe that anyone could look at that incredible light of a boy and not see what I see.
In our house, we don't say "special needs" very often. We mostly say disabled, and we say it with pride. I'm so proud of my two disabled sons, who are both so brave and beautiful and uniquely themselves. If I could write a review to the universe about my disabled sons, it would be 5 stars, a 10 out of 10. I wouldn't change one thing about those boys, they are magic.
To my two baby boys, happy Disability Pride Month. Neither of you needs to hear that because both of you have the incredible gift of being completely secure in who you are, but I'm telling you metaphorically anyway. I am in awe of the two of you, and every single day I think about how lucky I am to be your Mama (and Bubby's Mama too, of course).
Mama is forever the lucky one, my two unicorns. I am endlessly grateful to be a sidekick in the magnificent firework show of your lives. The rest of the world may never catch up, and I'm sorry for them but ultimately, it really doesn't matter what they think. I know what I know.
Always so proud of you, my dynamically disabled duo.
Happy Disability Pride Month!
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