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Article of Interest - IDEA Reauthorization

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Bridges4Kids LogoSticks and Stones
by Sandy Alperstein, Our Children Left Behind, MAY 12, 2004
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With words, we govern men. - Benjamin Disraeli

Yesterday, in “Truth of the Heart,” Debi Lewis wrote so poignantly about the tragic results that can occur when educators label children. She concluded that “[w]hen administrations start to back off the notion that kids must be sorted by label, our children can finally be viewed as incredible assets instead of liabilities.”

Debi’s words reminded me of similar thoughts expressed by Kathie Snow, a well known Colorado advocate, in her essay, “People First Language:”

Words are powerful. Old and inaccurate descriptors, and the inappropriate use of these descriptors, perpetuate negative stereotypes and reinforce an incredibly powerful attitudinal barrier. And this invisible, but potent, attitudinal barrier is the greatest obstacle facing individuals who have been labeled. When we describe people by their labels (medical diagnoses), we devalue and disrespect them as individuals. Would you want to be known primarily by your psoriasis, gynecological history, the warts on your behind, a balding pate, or any other condition?

Worse, labels are frequently used to define a person’s potential and value! In the process, we crush people’s hopes and dreams and relegate them to the margins of society. When we hear a person’s label, we (mistakenly) think we know something important about him, and we give great weight to the label, using it to determine how/where a person will be educated, what type of job he will/won’t have, where/how he’ll live, and more. In effect, a person’s future is often cast by others, based on the label. Today, millions of children and adults with disability labels are effectively “incarcerated” behind the walls of “special (e.g., segregated) places:” special ed classrooms, congregate living quarters, day programs, sheltered work environments, and more—all because of the label that’s been assigned. Labels have the potential to ruin people’s lives.

These thoughts stuck with me as I read about the amazing journey of a group of self-advocates in Washington State. As reported in the Seattle Post-Intelligencer on April 12, 2004 in a piece called “Lobbying from the grass roots,” a group of grassroots disability rights advocates endured an “arduous” legislative session that “forever changed this group of citizen lobbyists.” Described by one of these self-advocates as “an amazing adventure,” these ordinary citizens battled against the odds to achieve passage of a bill that would require the use of People First language in all future official state documents. (“People First” language is a way of describing someone which puts the person ahead or his or her label – such as “child with a disability” instead of “disabled child.”) “We want to be seen as a real person,” said one self-advocate. Another said, “It might not impact everyday life now…It’s kind of a trickle-down effect.” Finally, another advocate concluded: “For future generations, it’s my hope that people are spoken of in respectful manners. And if this is the beginning of that, then that’s wonderful for us and wonderful for everyone – as individual advocates and together as a group – to say that we were the beginning of that time that set a precedent.” You can read about the twists and turns that finally lead to their surprising victory in this piece, and perhaps you will see the parallels to our fight to save IDEA for our kids. (I sure did – the twists and turns, the “on again, off again” vote, and hopefully, the final victory! And I don’t know about you, but for me this has certainly been “an amazing adventure” that has “forever changed” my life!)

If thought corrupts language, language can also corrupt thought. - George Orwell

Words and labels, as Kathie Snow points out, can be used to include. But they can also be used to exclude. In this regard, the opposite of People First language may be “edu-speak,” a form of jargon that is taking over in our schools, according to a Washington Times article, “Flunking the Jargon Test.” According to this article, all the jargon being used in the education field today is “specifically designed to be confusing. ‘It reinforces the divide between schools and families.’” All this at a time when, according to this article, schools “need to involve parents in their child’s education, rather than alienate them with incomprehensible jargon.”

Talk about jargon! Nowhere is jargon more prevalent than in special education! It’s a veritable alphabet jungle out there! All those acronyms – IEPs, FBAs, BIPs – the list goes on and on. And if that isn’t bad enough, then there’s all that “code talk” swirling around us, with the rollout of No Child Left Behind and the reauthorization of IDEA. At least with acronyms, a parent can get a list of commonly used ones and eventually learn them. Not so with “code talk.” “Code talk” uses everyday words, but in anything but an everyday manner. At least with acronyms, the parent knows that he or she doesn’t understand; with “code talk,” the frightening thing is that the parent is lead to believe that he or she does understand, when in fact he or she doesn’t! As Shari discussed in her Home page article, “NCLB: A Context for Breaking the Code,” “some code words that sound very benign on the surface could actually translate into your child’s worst nightmare.”

So People First language is not just about being “politically correct” – it’s about a whole new way of thinking about (not just speaking about) people with disabilities. And jargon and “code talk” are not just cute little ways of communicating within a group – they are about excluding some while including others.

Let’s all pay attention to what’s being said out there – especially now, during an election year, with flowery rhetoric on the one hand, and IDEA under attack on the other. Let’s pay attention to which candidates and legislators truly walk the walk, not just talk the talk. And, as always, let us know what you’re hearing!

Our Children Left Behind [OCLB] was created and is owned/operated by parent volunteers (Sandy Alperstein, Tricia & Calvin Luker, Shari Krishnan, and Debi Lewis). Permission to forward, copy, and/or post this article is granted provided that it is done in its entirety and is attributed to the author(s) and For more about OCLB or to share information, please contact


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