Crumbs –

(I promise to write something more straight up funny again soon. In fact, I am working on a post looking at who is more masterful at cock-blocking – children or dogs?)

I am compelled to write yet again about  my feelings/thoughts/beliefs regarding the recent “Feel good-Inspirational” stories trending on social media that concerns ‘how somebody without a disability did a nice thing for someone with a disability’. (see News Flash! Hotty Has A Down Syndrome Friend! and Hard Ass)

About three o’clock this morning, I figured out why I am still writing about it. These stories and the responses they illicit are the antithesis of what I want for our son.

To say we have come far in the treatment of people with Down syndrome means we are getting rid of them before they get here rather than killing them through lack of medical intervention and institutionalization.

We have not come far – enough.

Do you have dreams for your kid?  Do they include ‘existence in the human race’? Or do you believe you have that covered?

To give you just one example – While you are driving around in your car with the bumper sticker that states, “My kid is on the honor roll at…” I am fighting to get my kid in an inclusive classroom even though a civil rights law from 1984 states he is already protected.

These stories trending seem to presuppose that if we are not outright discriminating against them and we demonstrate just some little speck of humanity that says you exist we should applaud our efforts, pat ourselves on the backs and say “You have arrived!’

It’s a contrivance. It’s inspirational porn (an awesome term I did not coin) designed to pull at our heart strings. It’s what The Today Show and several others pump out in lieu of real news every day. Or at best it’s filler, fluff.

Looking to make thunder in the world.

Looking to make thunder in the world.

It is not real acceptance as in ‘you are my equal’. Surely, it is not activism in the sense it will change one thing about the quality of my son’s life.

In the grand scheme of what we have to offer each other as human beings these acts are crumbs.

And – we are not raising our son to accept (or be grateful) for any crumb that might be thrown his way.

My kid doesn’t eat crumbs. Got it?

OK, now Drink My Milkshake.

8 thoughts on “Crumbs –

  1. YES! The first time I saw one of those stories, I thought, Great! The second, third…I thought, well, I’m glad he’s on the team, but, couldn’t they have played him at some time other than the last minute of the last game? And this last one, with the kid from the other team throwing him the ball…kudos to the other kid, bravo for having a heart, truly; BUT, COME ON! To everyone else.

  2. I have been mulling over making a big dissection of the video and showing what it is exactly that makes me so sick to my stomach about it, but I’m realizing that it’s not so much the video (although it is – not the actions, but the motivations for those actions and the whole it going viral) but it is the “this is what real acceptance looks like” statements from so many I really thought I was on the same page with and who I could count on to fight for my child as well for her to have the same opportunities as her peers. Today I’m grasping at straws again, but I have to say that I’m so happy that Down Syndrome Uprising and my fellow revolutionaries are some of those straws.

    Now, about cock-blocking…

  3. Thank you, I am still relatively “new” to all of this my daughter is 18 months old but for the past year and a half these kind of stories have done nothing to encourage me for the future we hope for. In a society where every kid gets a trophy I want my kids “typical” or “not” to find the places they can shine and experience REAL victories and success as well as the reality of we can’t all do it all … It’s called life.

  4. um hm. I’m right with you. I think.
    speaking of crumbs … new media hot article: Albuquerque restaurateur! annnnnnnnnnnnd he’s gooooooooootttt ….. you guessed it: Down syndrome. Now I don’t mean to diminish his success or his joy in it. But maybe people’s astonishment. Yup. He’s an adult. Working. And he owns the place. That’s great. Next?
    I aim for my boy, too, to become an adult. Working. Maybe even owning the joint …
    In the meantime, I’m still trying to figure out a school setting. Or a social scene. That actually includes him, at age ten. So we miss our old farm life on the river frontage, and we keep it simple, close to the home … and we get out for events that are open free to the public, or open by admission ticket.
    And I muster a smile, silently, graciously — sorely and proudly at once!
    when someone comments: “oh he’s so well adjusted” …. or “he’s doing so Wellll …”
    (you were expecting so much less?)
    yes. yes he is.

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