Modern Day Monstrosity

In the past few weeks I've been told that I'm a "pearl clutcher", that I should just "untwist my panties", and that I'm being "too sensitive" when I haven't felt that insults and belittling expressions, retard and tard, should have a place in our everyday conversations. I've also been called a "fucktard" for (politely) objecting to the word "douchetard".

Nice. I know. Makes me feel all warm and fuzzy about my fellow human beings. Yup. Makes me feel heard and appreciated as a person. And makes my kid feel like a valued member of a society that cares about her. Like she's loved and appreciated, and that she belongs. Makes her feel like a part of this great adventure, and not at all like a despised outsider.

Because someone thinks that saying fucktard will get him more laughs than saying fuckdink? Or because someone feels so strongly that the person they were ripped to pieces by needs to be called a douchetard and not ever a douchecanoe? Or because a person is so unimaginative that they cannot make a Palin joke any other way than referring to her as retarded?

What is this love affair with one word? Why are people so ready to defend their use of it? If you're out to insult someone, as seems to be a popular pastime, why not get creative? Why choose the one word, in any of its permutations, that singles out an entire group of people, a group that already has it pretty damn hard in today's society, and represents the members of that group as

mistakes
slow
broken
despicable
unfortunate
disgusting
strange
funny, but not the good kind
and
less than everyone else on this earth.

Because that is the long and short of it. It is language of oppression, hate, and discrimination. It is. It does not matter how much you are not pointing at my child when you use the word, you're still demeaning her, and others who have intellectual and developmental disabilities.

It does not matter that you also have a child with a disability but are not bothered by the words unless they are directed at your specific kid. You are aiding the language machine of inequality by not speaking up and attempting to make a change.

No matter how much we wish to do so immediately, the word 'retard(ed)' and its permutations cannot yet be understood as divorced from the concept of intellectual disability. A better case can be made for former classifications: idiot, moron, imbecile, but even they now carry added meaning, at least for this mother. There is no way for the parents to 'own' or 'take back' the offending word for their children. Someday, doing that may be possible for people with I/DDs, but as for now, they're not interested.

I know there are many things that need to be done and achieved for true equality. Things that require lobbying, funding, legislation, and hours upon hours of activism and advocacy. However, I also know that a change in our everyday language, and viewing certain types of language not as "free speech" but as language of oppression and hatred will help to undercut the persisting bias to see people with Down syndrome, or any intellectual disability as not quite human enough to be worth our trouble.

Again. I'm not asking for your money or even your time. I'm not asking for you to like me, or even be considerate of me. I'm not clutching my pearls in horror and asking you to stop swearing. I'm not being the "word police" or treading on your "rights". I'm asking for the tiniest, smallest speck of respect for a huge group of people. For your neighbor, that boy in your kid's school, your sister, your colleague, the driver behind you, that girl on Glee, and for a group of people that you might one day be a part of.  

This is not about my sensibilities.

Make a choice. Use language of equality. Teach your kids that language has power. Weigh your words. There may come a time someone needs to be called a giant bag of assholes, and that's just fine. Assholes won't mind. And people with intellectual disabilities will not be the butt.

My kid. Leading the charge.

I recant. Yes, it happens.

"So what do you do?"

"Oh, I, uh, parent. Yeah. I'm a mom."

Once she was born, everything else went out the window. I embarked on the greatest adventure of my life. After a half lifetime of touring the world and putting myself (and whoever was with me at the moment - hello and subsequent sorry, Viking husband) in situations that no Finn, especially one who doesn't know that opinions do not always have to be voiced out loud, or even hinted at with disapproving or otherwise eyebrows, should be putting themselves in, I became a mom.

To Babe. Who's like the bees knees, pixie dust, the bestest ever antidote to any mellow-harsh, and all of that cool stuff that I thought didn't even exist. She's the shizz and the sha-zam, and pretty much all the awesome magnificent I can think of. So ya, she's it.

Totally.

Before I had her I was one of those people who praised new moms for not letting the fact that they'd procreated change "who they were".

And I realize that is a capital offense.

Right. I apologize. I'm sorry. That's such a fucking nasty thing to assume or say. To think that what you are without children is the person you are, and should be, even after a life-altering event? I should have known better. I mean, I went about preaching how wonderful change is which just made a me a giant hypocrite. Apologies again, folks. Don't hate me. I understand now.

Of course the love of your life's going to rock you to your foundation. Change you for the better. Make you see the world in a new light, more than once each day, as a place that your sweet one will also exist and develop in. (Plug: Should you feel compelled to, now that I've apologized and everything, change the world for the better for my kid and for all people with Down syndrome, sign this petition, please.)

I now have a permanent ponytail for easiness, a back yard with actual grass and a sand box, and a red minivan with a top of the line car seat in the back seat. Rear-facing. Still. For ultimate safety.

And it's all still adventurous, and new, and something extraordinary. Every second of it.

So what I'm trying to say on this Mother's Day is that I apologize for being a childless jerk before. For not understanding that this change too that enables one to talk about poop (especially the rogue kind that makes its way into a shoe in the closet somehow), bedtime routines, and Caillou, and find those discussions fun and enjoyable (unless they're about Caillou and then the general sentiment seems to be that enuf is enuf already), is good change too.

It's not regression, or an insult to feminism. It's another adventure in a string of adventures that at least my life is made up of. Motherhood's the works, man.

Happy Mother's Day to all and all a good convo on poop.

'Twisting it out of wire' means you really should have gotten this by now

I have been struggling with a post about my everyday advocacy that would mention my hungry offspring, a jar of strawberry baby puffs, Doug Gansler, the Attorney General of Maryland, Sheriff Chuck Jenkins, a worthy petition, and a press release, all in one sentence.

Please click on the links and do the world (and my kid) a solid. Thanks.

But it's just not going to happen. There's something more pressing that's fighting its way out of my rambling mind to be put down in what will hopefully end up being a more coherent string of words than what I usually achieve.

Could happen? There's got to be a first for everything.

Today I wish to talk to you about making a change in the world. Not just how I go about it in my everyday (yup, still linking this to the Down Syndrome Uprising advocacy symposium), but how change truly happens, or actually, how I think we could be better at making it happen.

I'm looking at you, National Down Syndrome Society (NDSS), and you, National Down Syndrome Congress (NDSC).

This is what happens when you don't answer my mails. Just saying.

In order to make a change in the world we first have to identify what it is that we wish to change and then figure out how we can be the change we wish to see in the world.

Right? I'm sure I've seen stuff like that on a bunch of Facebook memes. Seed of truth and all that...

Totally. It is all about us. How we approach this. How we act in public. How we come across. The kind of example that we as parents, familiars and representatives set. And I'm pretty sure there are at least a few self-advocates out there who have strong convictions about how they like to be treated and talked about.

I'm sure we can all agree that the current perceptions about people with Down syndrome many folks out there have are hardly ideal. There's a lot of work to be done, sure. Lots of targeted education, legislation, and funding to deal with to make an actual change. I get that.

But I also get that we need to lead by example. We need to be the change. We need to think in a new way. We can't be bogged down by how the current society views people with Down syndrome and other intellectual disabilities.

We need to be different. We need to be advanced. We need to to think the way that we wish everyone thought. We need to stop apologizing and start taking charge. We need to be the change we wish to see.

NDSS and NDSC, I'm giving you the benefit of the doubt and will continue to believe that you actually wish for a change, although it's not exactly apparent in your behavior of late.

We need to talk the talk.

Language is key. We don't only wish for people to stop using the r-word, or Down syndrome as an insult, we wish to be so forward thinking that we get to equality with language.

We have to stop apologizing for the existence of people with Down syndrome, as if they were a population distinguishable by strange, specific to the syndrome, behaviors, and completely unknown health conditions that are never seen in the population at large.

We all, as in the people with Down syndrome and their parents, families and friends, know that there simply are no behaviors or health conditions that are purely found in relation to Down syndrome.

Maybe, and I'm just spitballing here, we should let the world in on this specific nugget of information? Maybe we shouldn't talk about "people with intellectuals [sic] and developmental disabilities who live in the community who often display language difficulties, unusual behavioral [sic] or an inability to react normally in an unusual situation." (my emphasis) or how our attention needs to be focused on training of law enforcement and first responders "on dealing with people who present the challenges faced by individuals with disabilities." We should maybe also steer clear of making people with Down syndrome out to be people "who may not respond in a way that the personnel are familiar with or have seen before." I mean, sometimes people react in ways that may be seen as unconventional, or unexpected, but that is a part of human contact and happens to all of us, not just people with disabilities. And again, seriously, I doubt that a person simply by virtue of having a disability can be so much more creative than the rest of us, that they will create a behavior, now in our time, that has never ever been seen before. My daughter's a wily little inventor alright, but even she has her limits.

Maybe it's just me, but I don't want to go out there and tell my surroundings: "Hey you, expect strange with my kid, cause, you know, she's abnormal and all."

I can't believe that I have to spell this out. In 2013. Sheesh.

I'd rather go out and be all like: "Hey you, I know you might not realize that my kid is just as human as you, but she is, so treat her like you'd want yourself or your loved ones to be treated. Understand that her reactions and actions have value and stem from the specific situation and her personality, not Down syndrome, and they don't require some specific procedure to be 'dealt' with. Be a human. Communicate with her."

To put it succinctly, as I've done in a number of unanswered emails to especially NDSC (since they are the organization behind most of the quotes above), we cannot use language or perpetuate images and thoughts that stigmatize and/or marginalize people we represent further.

We have to be forward-thinking. We need to be progressive. We need to see beyond the current reality, into the future, into what should and will be. We need to realize sooner than later that a person with Down syndrome having the right to be seen as an equal member of society should not be a radical idea.

We must not shoot ourselves in the back, or in the foot, or, well, anywhere. Actually, let's keep away from shooting, period.

Let's represent. Let's be cool and let's be the change we want to see in the world. Change begins with a thought. We have to fake it till we make it. If we build it, they will come.

Now.

Enough with the clichés already, let's do this!

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