1 in 700
When my son was born I read that 1 in 700 babies are born with Down syndrome. That statistic reassured me. I mean, that’s a lot of people. Surely every American at least knows someone who knows someone with Down syndrome.
It turns out, The Global Down Syndrome Foundation says that 38% of all Americans personally know someone with Down syndrome. I don’t really get that because the average American knows 600 people, but in any case, it’s not so rare no one’s heard of it. So rare that people should whisper it. It is the most frequent chromosomal disorder and that should give it a little clout, right?Ha! Don’t get me started. We’ll save that irony for another day. Today we’re talking about disability in general.
In the US there are an estimated 73 million people living with a disability. Patching together these same numbers, that means each person likely knows around 138 people who live with a disability. People with disabilities are the largest minority group in America.
So what is the problem? What is the big deal? When I was a kid, I mean a kid kid, I always told myself, “Everyone has something.” Meaning everyone has something that makes their life a little harder than the person next to them. I had a friend with epilepsy and one that was nearly blind.
And now? I have friends who live with mental illness, intellectual disability, can’t walk, can’t hear, can’t work, and that doesn’t even include the children of my friends with a whole ‘nother range of abilities and disabilities.
So, again, what’s the problem? You’d think with 23% of the population living with a disability it wouldn’t be so hard. Hard to get a fair shot at…anything. Everything. But, it is. If you doubt me, check any of the well written notes from Bad Cripple
Plus Everything Else
And let’s face it, “disability” is only one thing these said 73 million people have in common. After that, they are also a sub group of all other sub groups. Gender, Race, Income, Sexuality, Religion and so on all play into the big picture of each person’s attributes and consequently the reactions, accommodations, prejudices for or against and available resources.
An Inclusive Society
Down Syndrome Uprising asked: What would a truly inclusive society look like?
Inclusion leads me to think about the difference between equal and fair.
Not the same thing.
It’s like a square is a rectangle but a rectangle is not a square.
The thing is I don’t want everything equal. I want it fair.
I want first responders to account for the fact he will take minutes longer to process a command or question.
It’s the 21st century, buildings should be accessible.
ASL should be available at community events.
In America the person next to me should be able to eat food that won’t make them sick, be it meat or gluten or peanut free. Not that allergies are a disability, but it’s the same principle.
What is Fair?
I mean, is it fair that a school cannot serve peanut butter for one student? YES IT IS. Get over yourself if you think that your kid’s right to peanut butter is greater than another kid’s right to breathe.
Is it fair that you have to look past the ASL interpreter to watch an event? Really? This is how some people communicate. Because it is.
Is it fair that you have to take over a phone call for a coworker who has an epileptic seizure? Um, Yes. Yes it is. Is your job that much harder than the lightning storm flashing through his brain? What’s really not fair here?
A Little Empathy Goes a Long Way
Seriously people. An inclusive society is one where people make decisions based more on empathy than self-interest. Where people are open-minded to difference instead of narrow-minded with fear. And fear of what, anyway?And to be clear, empathy not sympathy. But that, too, is for another day.
Ok. So it turned into the rant I was afraid it would. The UN’s “International Day of Persons with Disabilities” is going to be over before I consolidate this into a coherent post.
The UN is calling for, “an inclusive society and development for all.” And guess what? That may mean a little more consideration from able bodies and minds. Consideration that’s not so hard, in the spectrum of things. Because let’s face it, just because a kid can’t eat peanuts doesn’t mean he can’t grow up to be a great inventor or contributor to the greater good? The persons who needs an interpreter also have money to spend in the community, if the community encourages or dare I say embraces them. A person working with epilepsy is not a “burden” on society, being a working, active, tax paying person. The child with special need in an inclusive classroom is teaching everyone a different lesson.
It’s like Rudolf. You know, the reindeer who had to prove himself worthy? Given the chance, his difference saved Christmas. Saved Christmas people!
Why can’t we learn from the mistakes of that mean old Santa? I mean, what a jerk.
But I digress. Again. What was the question?
What would a truly inclusive society look like?
How about when every child is seen like this:
“O, I believe – Fate smiled and destiny – Laughed as she came to my cradle – Know this child will be able – Laughed as she came to my mother – Know this child will not suffer – Laughed as my body she lifted – Know this child will be gifted – With love, with patience and with faith – She’ll make her way”
– Natalie Merchant
When every person is empowered to:
… “Maybe there’s a way out of the cage where you live – Maybe one of these days you can let the light in – Show me how big your brave is.”
– Sara Bareilles
And if everyone, everyone chose to realize:
“Even with our differences – There is a place we’re all connected – Each of us can find each other’s light”
What do you think?
Happy International Day of Persons with Disabilities!
I know what the world would look like. We have a long way to go.
In he meantime – read again with the music playing.
It’s more fun that way.
& don’t forget, you can Join the Club for Grown Ups & Downs Updates here.
*Originally Posted in Dec 2013. Put into the world again for #TBT and also because, I’m still thinking about this. What about you?
Totally agree on the importance of empathy in meaningful inclusion, and I think that our discussions centering on this component are very much in need of more definition. Too often are compassion, sympathy, and other actions that are based on an inequality in agency touted as tantamount to empathy. Really, all we need to do is look at it from someone else’s point of view, without feeling we’re somehow ‘above’ the situation.
I agree. Sympathy does not equal empathy. Nor does tokenism. For example,
There was a public HS student in a town near me with DS who won Homecoming King this year. I was leery of the whole scene. But with one look it was evident that this was a case of inclusion and pride in understanding that sometimes, when someone has to work harder than everyone else, they deserve a little credit. I was cool with that.
I have no problem with credit where it’s due. However, i’ve yet to see a single (yes, just one, just one single one) piece of reporting that does not somehow focus on the ‘good deed done’.
This stuff will forever get under my skin, but never more than when it’s defended as “real inclusion” in the community.
My son had the opportunity to perform with the Broadway Cast of Mary Poppins when they travelled through Omaha a few years ago. This happened because we “bought” the opportunity at a fundraiser. Anyone *could* have done this, but we had the highest bid. Now, would have the media picked it up if it weren’t Marcus? I don’t know. But I think they did a great job. SO I hope you swing back to see this.
(I’m sure I’ll talk about this again.) http://www.youtube.com/watch?v=1BRmXaJdJRE
You are the best mom ever!
I think society is slowly but surely moving that direction. For example, when I was in the third grade in Alabama, the “special ed” kids were in their own class and ate before everyone else.
Now, I have friends whose children are included in the mainstream classroom. They are taken out for special attention, but for the most part sit with their class most of the day.
I think it’s important for society to be more inclusive because acknowledging something exists is the best way to grow in character as a community and as a person.
What a fantastic post!
Thanks Jenny. Yes, it is a slow slow climb – and I think it all starts with the kids. Doesn’t everything? 🙂
Wow! Yes, wouldn’t that be great! Very well said!
AND – thank you for clarifying how exactly to write: “a whole ‘nother ”
I think /say that all the time but wasn’t sure I could put it in writing – I will use it ALL the time now!!! 😀
Ha! I’m here to help 🙂
Awesome post. You know all my thoughts on the subject (and oddly enough, they closely align with yours…huh), so I will tell you: I laughed for a whole minute (yes–out loud!) at the Santa part!
“Saved Christmas, people!”
So, good job on everything. Thanks for making me think, wonder, and laugh again.
Um…just one thing: when you were going through the laundry list of people you knew with…well, did so many of them have to be me? (or almost me)
Yeah, we’re just one big disability stew, our clan. 🙂
Wonderful post as ever dear friend. You are the epitome of the gentle but strong mother warrior, making real change.
Have you ever watched the old fashioned Rudolph film…? Perfect analogy.
Thanks to you for your lovely comment. If you’re talking Bass Rankin animated Rudolf, I know, right! Even as a kid I thought, something’s not right here…I don’t like this Santa Claus. Ahhh, children’s tales.
Just wanted to say that I really, really loved this.
Wow, what a great explanation of what inclusion is all about!
I don’t get why more of us don’t know people with Down Syndrome, either. The first time I even saw any frequently was in college, where I often saw a couple of men in the dining hall cleaning up the tables. That always seemed wrong, not to know anyone with Down Syndrome or even be sure how to start a conversation.
And don’t even get me started on Rudolf the Red-Nosed Reindeer. Let’s just say, accepting Rudolf just because the boss likes him seems more like politics than real acceptance to me. :D.
Looking forward to reading more of your blog!
Thank you and Thank you for coming by.
I’m glad to have found your blog, too – I’m sure we’ll be seeing more of each other – 😉