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My Struggle with the Word “Disabled”

Katie Novak
Katie Novak
February 3, 2021

If you’ve heard me present, you’ll hear me say, “It is not our learners who are disabled. It is our systems, our curriculum.” This is not to say that our learners don’t have disabilities because they do. Disability is a source of identity, pride, and civil rights. As a mom of a daughter with a disability, I wouldn’t trade her, or her disability, for anything in the world. My struggle recently is whether disability and “disabled” are the same thing.

By writing this post, I hope to continue difficult conversations about disability so as a field, we can get this right. I will share my own thinking, not because it is right, but because it is mine. Also, I encourage you to share your own thinking. Because your voice matters.

To give some background, I posted the following quote on Twitter, “Learners are not disabled. Curriculum is. Systems are. But kids are not.”

UDL founders, David Rose and Anne Meyer have said since UDL’s infancy that “disability is contextual.” In the book, UDL Theory and Practice (Meyer, Rose, and Gordon) the authors reflected on the beginnings of UDL and noted:

In the early 1990s, we shifted our approach to address the disabilities of schools rather than students. We later coined a name for this new approach: universal design for learning (UDL) …. Today, the public mindset is beginning to shift away from a medical model of disability towards a recognition that context and self-awareness as a learner both play a huge role in whether any given condition is disabling or not.

My thoughts are impacted by these foundational beliefs as well as a focus on “people first” language. We often don’t call our students “disabled students” but students with disabilities. This perspective is addressed in a blog written by Tilly Griffiths in the Stanford Daily. “I have a disability, but I’m not disabled.”

To me, the term “disabled person” with which I am most familiar back in the UK implies that a person’s disability is all-encompassing and defines their entire existence. “Disabled” can easily be interchanged with similar words that suggest a wholly non-functioning, incapacitated state and, from personal experience, I know this to be far from the case. In contrast, the term “person with a disability” more commonly used in the U.S. implies that just one or more particular aspects of that person causes them to face additional challenges and, for me, this would be my weak muscles and inability to walk. This choice of syntax not only makes the individual the primary focus of the statement instead of their disability, but also more accurately portrays the nuanced nature of disability. It is not my intention to distance myself from my disability entirely as I am eager to acknowledge this as a significant part of who I am, however it is just that – one part of a complex and wonderful whole.

When I say curriculum is disabled, I think of the word differently than disability. What I know is that curriculum doesn’t work for many students, for many reasons, when it is one-size-fits-all. To me, that makes it disabled. But then some amazing colleagues, who respect me enough to push my thinking, shared the following. I honor and respects their points of view and expertise without reservation, so now the difficult conversations begin. These colleagues shared their thinking with me on Twitter (see below).

 

So now, I am reflecting and struggling with the use of the words “disability” and “disabled.” I would love to hear your perspectives, and I am happy to share them. If you have articles, tips, or just want your voice to be heard, please write to me.

Share your thoughts with me @KatieNovakUDL on Twitter - post text, audio, or video me and I will post your insights and perspectives in a series of blogs and we can be transparent about our conversations and why they matter. This, at its core, is what expert learning is all about. I recognize I have a platform and want to use it to push our field forward. So grateful for all of you.

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