Friday, October 27, 2017

Be-Awareness Month for people with Down Syndrome! Language MATTERS

Talia is well aware of my existence

And knowing that, she may also caution you to: Beware!

Beware! This is a month where I can take the concept "it's all about me" to a legal level. October has been declared Down Syndrome Awareness month. And as there are only five days left in this month, barely, I had better get cracking and write something.

Or, I should share some brilliance that has already been published. There is no one subject of which to be aware when it comes to Down syndrome but rather the many facets of individual people who possess an extra chromosome. You can be aware of my existence, and if you're reading this, you are! You can be aware of my biochemistry, and if you are you're a scientist or a doctor, or a mom who has become slightly obsessed with balancing my biochemicals. But you can also be privy to some vignettes of of lives that perhaps may be a bit different than yours.

I will begin with a hot-off-the-presses article by Beth Steinberg, one of the other Israeli Wonder Women that live here aside from Gal Gadot. Beth's article brings our awareness to language.

"Language matters," she reiterates. 

And amazingly, with politically correctness having gone wild, a word still lurks that should've been stamped out long ago. How did this one get by? Or even as Beth notes,how is it "back: repurposed, reworked, and better than ever" ??

It's one spicy and challenging article. Curious? Read on...

What “Tard” Are You Anyway? Name Calling In 2017

Whether about gender and sexuality, developmental difference or politics, “retard,” is back: repurposed, reworked, and better than ever.

Originally published here: http://jewishweek.timesofisrael.com/what-tard-are-you-anyway-name-calling-in-2017/

Are you a Libtard or a Libertardian? A Conservatard or a Neotard? A Gaytard, Fagtard or Lestard? Or maybe just a Tard, described in the Urban Dictionary as “one so retarded, they do not deserve the ‘re’.”

Squirming as you read those words? Sure you are. You’re a nice person. You don’t say the word ‘retard,’ certainly not to someone who’s actually retarded, meaning who has developmental delay, but you might use the word when you or a friend does something stupid or idiotic – you know, something that’s just ‘retarded.’ (A 2014 poll by the National Down Syndrome Society noted that 90% of responders said exactly the above sentiments as to their use and misuse of the word.)


You might certainly use the word retard about anyone who’s on the opposite side of your political and religious beliefs, right? They are such lunatics after all. Horrible people, undeserving of your regard.

In 2017, trolling someone else’s feed, name calling, and plain old online-nastiness is the nature of social discourse today, aided and abetted by the invisibility-visibility cloak of social media.

To be mean and show our smarts? It’s an inalienable-online-right, up there with bearing arms and buying bump stocks for our AK-47’s, or our Twitter feeds.

Just this past week, I was taken aback by a recent thread on Facebook ,in response to an article about President Trump, where a commenter noted, “Please, he is an idiot…retarded people have an excuse for their behavior, Trumpturd…does not!”

I sat back and thought for a moment. If a person has a known developmental delay, he or she has the right to bad behavior.

Really, who said so?

And, is that why people without disabilities continue to believe that people with disabilities are dangerous?

A 2011 poll by Akim, an Israeli service provider and advocacy organization for people with developmental delay, reported that 25% of respondents believed that people with developmental delay are violent and threatening. A follow-up poll in 2016 which measured the responses of both people with and without disabilities, showed the kind of emotional disconnect seen regarding the use of the word retard. While people without disabilities responded more positively than in previous years as to befriending (70%), and/or living near someone (90%) who has developmental delay, people with disabilities reported that they are often spoken to rudely and inappropriately, and almost 50% of those polled said they’ve been attacked and abused by others because of their cognitive differences.

Who’s exhibiting bad behavior then?

Just this morning, as I gently nudged our 20-year son with disabilities – Down syndrome and autism, both forms of developmental difference – through his morning routines, he paused to offer me a morning hug and a snatch of a song that was running through his head. A song, that much to his annoyance, we haven’t recognized after an exhaustive search through his playlist and youtube history. But I digress. After a moment’s irritation – I hadn’t had any coffee yet – at his slowing us down during the morning rush, I laughed and thought to myself, “Akiva is such a nice guy, why don’t people appreciate that more about him?”

Let me put that better. Akiva who prefers touch to language, often forgets to use language when interacting with others. If I’m there, I’ll remind him and help him facilitate conversation with others. But in those awkward first moments, especially if they don’t know him, they’ll look at me and say, “it’s okay, it’s okay,” and I say, “it’s not okay. Akiva wants to make conversation, and if you’ll work with him, he can.” And if Akiva has a moment of frustration and verbal fatigue where he might pinch or scratch, he is always asked to reckon with his behavior, as it is not nice, nor is it acceptable. His developmental differences do not allow him to be a jerk.

But back to that Facebook thread and the skewed notion of “retarded people have an excuse for their behavior,” I commented, “I’m no fan of 45 but would ask you not to compare those with developmental delay as having an excuse for bad or ‘idiotic’ behavior…Being retarded cognitively, means your development and your understanding and ability to gain certain skills, may be delayed, but that may not delay your understanding and caring of others. Retarded does not mean you’re an asshole.”

Language matters. Language matters. Language really matters.

Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change.

1 comment:

  1. Thanks for the repost! Language, language, language, will help us shift our mindset forward.

    ReplyDelete