When I was dated, I dated. I dated men from pretty much every race and I was completely non-discriminatory in terms of country of origin.
When I was dating guys from different races – or they, me – we learned of each other’s struggles in our respective areas. My Japanese boyfriend in Japan had no idea what life in Japan was like for a gaijin until we got together. He hadn’t heard or seen what it was like to have doors automatically close in your face or for people to not give you the time of the day because you weren’t Japanese – and the thing is, even after he heard all about it from me, he still didn’t experience it first hand. How could he? He never could. He was Japanese, after all.
When a black boyfriend here in the US would talk to me of what it was like for him growing up black here, I’d have an idea of what he was talking about by virtue of the racial discrimination I’ve experienced in other countries but I will never really know what it’s like. And how could I? I’m white.
We can try to understand the struggles of those we care about. We can see what is being struggled over, we can feel outrage over it, but the truth of the matter is, we can ever really know what it’s like to walk in the shoes of someone else unless we ourselves wear that brand.
Well, I’ve been thinking that it’s the same with disability.
That there are these incredibly strong communities of parents who have kids with a disability – be it Down syndrome, on the Autism spectrum, Cerebral Palsy, or something or anything completely different.
The parents themselves were thrown into the disability world by virtue of the fact that they have a child who has a disability.
The child is a part of a world that the parent can never belong to and never fully understand. And how can they? They don’t have a disability.
But the parent sees the struggles, the discrimination. Experiences some things like doors being slammed in the face for what may be the first time.
But like a white person can never fully understand what it’s like to be black in America, just like a Japanese person can never fully understand what it’s like to be white in Japan, a parent of a child with a disability can never fully understand what it’s like to have a disability.
This part frustrates me sometimes, as a person with a disability.
It can frustrate me when I see parents going through a disability learning curve, trying to navigate the world of disability that they’ve been included in for the very first time. They are not members of that world, no, but they are included. It’s like they have a guest pass in the waiting area.
It frustrates me because I see parents trying to figure it out on their own, without a whole lot of input from people with the same disabilities. Sometimes the people with disability don’t offer advice or input but more often, the parent ignores what the person with disability says, or does not ask, tune in or tap on. It’s like some parents are in the waiting room and all of the sudden are greater experts on disability than anyone with a disability ever was.
Those parents are proponents of inspiration porn
(and “inspiration porn”, by the way, is an image of a person with a disability, often a kid, doing something completely ordinary – like playing, or talking, or running, or drawing a picture – and carrying a caption like “your excuse is invalid” or “before you quit, try”).
They like their disability coming with a “broken” slant, like you know, people with disabilities are broken and kids with an extra chromosome are angels and special and all that crap.
I don’t think it would bother me much if they weren’t so damn loud!
I mean, LOUD!
So loud that even me – deaf as I am – cannot escape it. And I just shake my head sometimes, ummmmm….. yeah, thanks for telling me all about the disability experience, you know, now that you’ve dipped your toe in it by virtue of your child being born!
Not all parents are like this of course. There are many excellent eggs in the basket and many of those dear to me are new in this community. I find it more touching than I can express that so many parents care so much about their kids that they walk the extra mile and truly endeavor to understand all – especially the empowering – aspects of the disability world.
When I was 15 years old, living in Tokyo and going to a Japanese high school, I’d get pissed off when one too many people called me “gaijin.” “Gaijin” literally means “outside person” and can be taken as a person without a country. It has a flavour of “less than human” about it.
When I’d get pissed off, I’d try to say something in my broken Japanese like, “no! I am a human being!” Only I mixed up the word for “human” – ningen – with the word for “carrot” – ninjin, so I was really saying, “no! I am a carrot!”
No! I am a carrot!
My point is: we make mistakes. I made plenty when I was trying to navigate Japanese and I know well meaning parents are going to do a facepalm in the future, right up there with my carrot.
Because we are all really
carrots human, aren’t we.
Like the Japanese were gentle with me when I was bumbling through their language, I think it’s important that those of us in the disability community remain gentle with parents that are learning their way. Even when they call us “broken”, even when they share inspiration porn on facebook, even when they don’t ask or listen to those from the disability community.ninjin desu!
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Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.