Somewhere on the Internet right now, there’s an argument going around. It’s not a new argument, I’ve seen it before. What may be surprising is that it’s an argument in the disability blogging world, about whether or not parents should write about their child’s disability.
Needless to say, this has caught my eye, as I am the parent writing about her child’s disability.
The arguments aren’t necessarily horrible, in fact, many arguments against parents writing about their child’s disability are logical. Things like “What about when your child grows up and reads this?” and all its variations, “What about your kids friends/schoolmates finding this stuff?”, and “What about your child’s privacy?”.
Like I said, legit reasonings.
However, where they lose me is when they argue that only the people with the disability should write about it. That as a parent, I shouldn’t blog about my child’s disability but instead, look to those with her disability to do the writing, and read their experiences. That as the parent, I’m not the one who the disability affects, therefore, my experiences are invalid.
I took an informal poll of our household, asking the question “Do you think Maura’s disabilities affect you?”
“Oh heck yeah!” her sister responded, then quickly added “But in a good way.”
Her brother eyed me and said more thoughtfully, “I’ll just leave it at a “yes”.”
“It’s okay, I know it’s not all good ways.” I stated. The brother looked relieved, the sister looked thoughtful. “Like when Maura eats.”
The brother who loathes the loud way Maura chews shuddered. The sister blinked. “Oh yeah.”
What can I say, I wasn’t raised in a sugar-coating kind of household, and I don’t raise my kids that way. Maura’s amazing and wonderful and can be just as annoying of a sibling as the rest of them. And in keeping with the theme of honesty, her disability doesn’t just affect her. It affects the whole household. It affects so much of our life that the lines have become blurred for me, because I think of Maura’s disabilities when it comes to everything.
For example –
I can’t just buy her clothes. I have to make sure they’re clothes that will bolster her independence. That means no buttons, no zips, no snaps. Elastic waists are our friends. Tiny pearl buttons are our enemy.
Having a hand-held shower makes bathing her so much easier, as I have to help her at least with hair washing still.
In house-hunting, we have to have four bedrooms still, because Maura needs her own baby-proofed room. We can’t have a yard that’s terraced steeply because she might fall. Our yard must be fenced, and the gates must be locked from the outside, so that Maura can have the freedom of playing in the yard without going free-range in our neighborhood. The less stairs the better.
Every outing comes with a quick-escape plan in case of meltdown, seizure, injury, bathroom accidents, etc. Aisle seats are always asked for. Parking is always considered, as is the comfort of others (aka, if we’re at an event where Maura being loud isn’t kosher, a parent will cut and run with her, so not to ruin it for others.)
I’m seeing a personal trainer, because while it’d be nice to lose weight, my main motivation is to be able to wrangle Maura without injuring myself. Because the girl is stubborn and now as big as me and figuring out she’s almost as strong as me. I have to be able to move her on my own, whether it’s getting her stubborn self out of bed for school, or if she injures herself and I have to assist her in any way. I have to be prepared to do it myself.
I hide food to keep her from eating it all in one sitting….wait…I do that with all the teens. So that’s actually normalish. But so much of it has become our normal as well, just like so many other families like us.
Maura’s disability isn’t a little bubble that keeps her contained. Maura’s disability is a glitter bomb, both shiny and wonderful and a little annoying at times when it gets in your food. You can try all you want, but once a glitter bomb explodes in your house, that’s it, your house will always have glitter. You can get used to it, come to enjoy all it’s sparkle while being annoyed that there’s a bit of glitter in your coffee. You live with the glitter and adjust your surroundings to work with the glitter.
And as a writer, I write about that glitter.
But some people think I shouldn’t, that I should leave that up to those who produce the glitter…or have the disability.
Here’s the thing though – I can’t look to adults like Maura to write about their experiences so I can learn from it, because as Maura’s sister put it “Most people like Maura can’t write.” That’s our reality. Maura’s moderately intellectually disabled, which sounds not too bad until you realize the range goes Mild, Moderate, Severe. She’s in the middle, the moderate, the people with IQ’s between 30 and 50 points. She’s also one of the many kids without a diagnosis. There are precious few places to go when your child has no label, and honestly, those writing about life with a disability aren’t like my daughter. Yes, I can still learn from others, and I have a natural curiosity about people, so I will keep reading about other people’s differences and disabilities and experiences.
But I won’t stop writing about my daughter. I am her voice. She can’t advocate for herself, so I shall do it for her. She can’t share her experiences with other parents of kids like her, so I shall. Yes, it’s important to listen to those with the disabilities, but that doesn’t negate the experiences of those of us who live with the person with the disability. I won’t be silenced by those who say my experiences aren’t valid. I will still be honest in the sharing of our lives. I will still continue try to be as respectful as possible of Maura’s life and those involved in it. But I won’t be silenced, mainly because of the readers who have reached out to me to say “Thank you for sharing, I was feeling alone in this.” or “I understand better now what those with disabilities go through, thank you for that.” or “Wow, I never thought of it that way, you’ve made me really think about my word choices.”
I may not have Maura’s particular disability, but I live with it. Hell, I’ve embraced it in all its glitter bomb sparkliness. It is as much of my life now as it is hers. I’ve accepted that fact, others should too.