Sunday, May 5, 2013

'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.


Enough with the clich├ęs already, let's do this!

This post is part of a Blog Symposium brought to you by:

Down Syndrome Uprising


  1. Here! Here! Words of wisdom from the wise, well said. I feel that people learn from books, articles, teachers and countless medias but mainly people take their cues and learn from their peers and immediate society. If we don't act how we should rightly be perceived, how will change ever be affected? I also believe that language is so important in peoples understanding of the world, language is the mother of all thought, not the other way round. I'm new to this wonderful community, my beautiful daughter was born 8 weeks ago and already I feel she has been met with a lack of appreciation of who she is and who she may want to be in the future. Great blog, thanks

  2. I think what bothers me most about the whole training thing is that our kids are seen as someone that has to be 'dealt' with. Ugh , I just don't like the word. I'm with you on this mama--let's be the change!


The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.