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Things Our Culture Doesn’t Tell Us About Disability

Growing up, our culture tells us a whole lot about the world in which we live.

The message of our culture is that disability is a burden, it’s a weakness, it’s something we need to overcome and fix. If we have a disability, the message that we receive from people around us – not all people, but enough of them – is that we need to fix ourselves in order to be good enough.

I want you to let that sink in a little bit.

Those of us with disabilities spend our formative years with people around us (not all people, but enough) nudging us to fix ourselves  to “overcome” an intrinsic part of who we are.

We are asked to change the unchangeable.

We are asked to change things that we can’t, by people we have a connection with. That means that us deaf try to hear or asked to learn to lipread, talk; holes are drilled into our skulls for hear ware. Kids with Down syndrome go through years of various training – sometimes with a sincere desire to help facilitate their way in the world and sometimes with a sincere desire to try and make them more like people without Down syndrome.

That means that we are often told that we need to be like something we are not, we need to be different than who we ARE.

Added to that, we have popular culture without us reflected in it, we don’t see people with our disability in any position of power, we don’t see ourselves anywhere except in some “feel-good” flash of a story about someone helping us or something.

This seeps in and makes its way around our hearts and our heads: we aren’t good enough. We are a burden. We are useless. We are stupid. We can’t make it, do it, we’re broken. Ugly. Worthless.

I ask you:

What happens when a kid spends their formative years absorbing messages like that?

Do you know?

I’ll tell you: we don’t think we have value. 

what culture doesn't tell us about disability

 

When we are hurt – emotionally, physically or sexually – we think we deserve it somehow, we rationalize it and don’t report it or seek help. When opportunities shine their way to us, sometimes we don’t grab them because we don’t think we are worth it (who would hire me, want me?!). We often find ourselves in relationships that harm us, but we think that it’s somehow okay because…. we really don’t value ourselves.

Of course I should probably go back and re-write all of what I just wrote and replace everything with an “I” statement: “I” thought I deserved being hurt, “I” didn’t grab opportunities because “I” didn’t think I was worth it, “I” found myself in abusive relationships. I, I, I. I don’t want to go back and change my statements though because I’ve realized that I’m like most people with a disability,  we disabled have so much in common.

Regardless of our disability, we really do have so much in common, because we grow up in the same culture that has the pervasive messages of our broken-ness. We absorb the same messages. Someone else might not walk, another person might not see, but it really doesn’t matter; we’re all getting the same messages sent to us by a mainstream culture that sees us as fundamentally broken.

Our culture does not tell us that we are worth much

The problem is that when you don’t think you are worth much, you don’t protect yourself, you don’t fight for your rights, you don’t see your value. You don’t realize that you have power.

You don’t understand how NOT alone you are, or rather, how MANY of us there really are.

In our many-ness, we have power, and by reaching out, seeking each other, holding on, sharing our experiences, understanding precisely what our culture is and is not telling us all about disability allows us to form a different message.

The message that our culture could be telling us about disability:

  • Disability is a natural part of the human experience
  • Almost everyone on earth has a connection with disability
  • “Disability” is an inaccurate word, but it’s the only one that we can agree on for now, so just say the word, and say it UNDERSTANDING that it does not reflect on capacity or ability!
  • There are advantages to every way of being, INCLUDING disability

On a hippie-bend, our culture culture could be saying things like:

  • We are all children of the universe, “no less than the trees and the stars, you have a right to be here.”
  • We are flowers of one garden: a garden is most beautiful with a lovely array of intricate blossoms
  • There is beauty in all diversity
  • Collective consciousness is real: if we value the power of all, we GAIN the power of all
  • Whatever you believe, so it is.
  • Kumbaya, baby! (nah, not really, but just checking if you were still reading)

We, You, Us, Me: We are the First Step

Culture will shape up nowhere, nohow real fast without us sculpting it.

We have to be the first to believe in ourselves and in our worth. It might feel like it’s asking for the impossible, but we have to stand by ourselves, each other. We need to believe in our power, reach inside and heal those wounds, move forward.

Because this is the thing: we are worth it, we were always worth it, whether or not our culture told us we were.

SaveSave

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!

 

*****

A Note from the Tea Collection: 40% off Sale Items

Starting today, June 30th through Sunday, July 7thTea Collection is offering an additional 40% off sale items with promo code SAVE40. Stock up on comfortable and durable clothes for the new school year or the next family vacation. Don’t miss your chance to take advantage of this amazing sale from Tea Collection! Happy Shopping!

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!

 

*****

A Note from the Tea Collection: 40% off Sale Items

Starting today, June 30th through Sunday, July 7thTea Collection is offering an additional 40% off sale items with promo code SAVE40. Stock up on comfortable and durable clothes for the new school year or the next family vacation. Don’t miss your chance to take advantage of this amazing sale from Tea Collection! Happy Shopping!

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