Redefining Disability. Struggling with Understanding

Rose B. Fischer is hosting the Redefining Disability Awareness Challenge, and The Redefining Disability Project.  I find this whole project amazing.  There has been a lot of talk about diversity in writing (the We Need Diverse Books campaign being just one piece of this), but this is one of the few places where I have found talk about including diversity of “ability.”  As I can I want to participate in Rose’s Project — hopefully by actually responding to the questions posed, participating in the comment threads on her blog and, most certainly, sharing the original posts here on my blog.

There is a rough schedule of upcoming topics and posts which can be found on her site for those who want to read somewhat more coherent explorations of these topics!

A place to start with understanding “disability” is with the challenge of language itself.  This word can mean so many different things, to so many different people.   I like the way that Rose has set out her understanding of the term “disability” for use in this project, so I’ll go with that, even though I still struggle with the term “disabled.”

For the purposes of this project, a disability is anything that has a medical or biological origin and substantially complicates or impedes one or more major life activities….This project takes the view that “disability” itself is not a problem but  a natural part of human experience. All so-called disabilities are natural, even if their origins relate to physical or mental trauma. I don’t equate “disabilities” with problems or limitations on an individual level. The concept of disability is a cultural construct, and the problem is with the society that limits people, not with the individuals whose bodies function differently than the perceived norm.

Rose B. Fischer

The awareness challenge is 52 questions exploring disability, your own experiences, thoughts, and reflections.  I’ve been meaning to tackle these for a while, and when I sat down to start responding to the specific questions for this second post of the Redefining Disabilities project I found myself wanting to give some background before I jumped in.  So, I give you Question #1 of the Challenge:

  1. What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities?

I have had loved ones with disabilities, I have worked with individuals with disabilities, and I experience things that could be classified (by the definition we are using) as disabilities.  I started writing this whole long catalog, about my experiences, about what I have learned from others, and what I have learned from myself.  But, it is unnecessary.  Yes, the answer to these questions is yes.  I have experiences with disabilities, with my own, with loved ones, with people I have worked with.

A few snippets I will share:

Watching the wonder and awe of three-year-old children as they discover the world around them, not caring that one of their friends has a more challenging time in balancing, or can’t hear as well, or doesn’t quite comprehend the same concepts at the same levels as they do.  None of those things matter when you are watching a butterfly break free from a chrysalis, or seeing how big of a mess you can make with the paint before your poor teachers realize what you’ve done.

Realizing the very many different ways we can “hear” music, and what a comfort those varying vibrations can be.

Deciding that I kind of love the phrase “Special Needs,” but only when I can explain how I am using it, because in my mind we all have special needs.  Each of us are special and unique, different and diverse, and isn’t it wonderful when we get to work in a situation where all of those unique needs are cared for and paid attention to, regardless of what “labels” you may have been given?  (Because, believe me, there were times when the children labeled “special needs” needed far less attention and care and adaptation than the ones who were identified as “normal.”

The exploration of this particular moment of the Disability Awareness Project is around the matter of Disability as a Social Construct.  These were the questions presented:

What social definitions/labels have others applied to you? What definitions or labels have you chosen for yourself?  When you hear the word disability, what do you think of?  What do you think about current media portrayals of people with disabilities?

Here’s the thing.  I don’t have a diagnosis, and have never identified, personally, with the phrase “disabled.”  I have faced a lot of health challenges in the past decade (wow…it’s been a decade), and I am not ruling out the possibility that I have a chronic disease that could be classified as a disability.  But it is not a term that I have used, or even embrace.   Some of that may well because of my understanding of disability as it is portrayed around me.

There are plenty of other labels that I have been given, labels I claim and labels that I have been given: white, female, overweight, geek, nerd, straight, girly, ally, historian, writer, author, liberal, christian, non-christian, religious, spiritual, weird, reader, gamer, dancer, wannabe, dreamer, friend, daughter, sister, twin…. so many labels, sometimes accurate, sometimes not, occasionally contradictory, at times confining.  I’ll explore the whole concept of labels more at another time, though.

As I alluded to in my earlier response, I have worked (and currently do work) with people who have the “disability” label.  It’s really been a theme through my life, and perhaps part of the reason I can’t quite bring myself to claim the same.   Because I don’t see what I am dealing with on a day-to-day being on the same level.  Though I struggle to find the right balance to have enough energy to get through the day, and I have had to work very hard to, basically, re-learn how to learn, and I sometimes am unable to process things as well as I know I should, I don’t consider myself to have a disability.

There are multiple reasons behind this, but a large part is because I don’t see my challenges as part of what is generally portrayed as being a disability.  In the world around me, disabilities have labels, accommodation that need to be made, some sort of limitations, and restrictions.  I realize that this is exactly part of the social construct that is being talked about — but at the same time, it’s a part of my experience.

It is not something I want to identify with, even though I do have limitations, have to create my own accommodations, and have to listen with extra care to the signals my body sends me.  Not because I think that anyone who claims these labels, who seeks out accommodations, who needs help or faces “limitations” is somehow lesser — but because I feel like if I were to claim so would be a sort of cultural misappropriation.   That challenge that there are those whose lives really are defined by their disabilities, who have struggled far more than I have.

At the same time, that for me those things that could be defined as disabilities are things I am working to “fix” and overcome.  I have accepted that there are some things about my life that are different now, but they do have a great influence on the way I interact with the world.  I can’t pretend that they don’t.  I can’t pretend that they haven’t become an important part of who I am, of my identity, even if they are not things that I readily share with others — even if they are things that are quite nearly (or entirely) invisible to the everyday person I interact with.

This thought catches me up so much that, try as I might, I can’t answer the questions.  I can’t explore the ways that I see current media portraying disabilities because I start to struggle with grasping what the term even means.  Even using the earlier mentioned definitions, I struggle.  Which is, honestly, part of why I am so interested in this project.  The idea of further exploring not just what “disabled” may mean, and how it is portrayed, but also ways to write characters who are “disabled” in some way where such a thing does not define them.  I know that, all too often in modern storytelling a disability is treated as something to overcome.

Actually, there is an example that I can think of from modern storytelling that, to some extent, seems to show a character that would traditionally be considered disabled who is allowed to be a character, not defined by her disability but simply a part of who she is.  That’s Becky, from Glee.  A character with Downs Syndrome, it certainly does appear as part of the plot at times, but she is a person all her own.  Sometimes a challenging person, one you don’t even always like (at least, I don’t), as full a character as anyone else (honestly, sometimes a fuller character than anyone else).

Okay, so I’m not entirely sure where this post went.  Did I address the questions?  Have I furthered the conversation?  Am I simply running in circles?  Pretty sure I’m taking in circles, and probably even contradicting myself in the process.

I have struggled with this post so much that it’s become one of those ones I feel like I have to post.  Though the coherence may be iffy, and it may raise more questions than it even attempts to explore, it is where my thoughts currently run — and one of the reasons I find this entire project so interesting, and so important.


5 thoughts on “Redefining Disability. Struggling with Understanding”

  1. Catching up on non-Banned Books posts… Just wanted to say I can relate. I’m doing my best to follow the terminology and everything but I just don’t always understand what I’m being told about terminology or whatever. I can also relate to not wanting to use the label because it feels like I’m appropriating something that doesn’t apply to me, but maybe it would be helpful to do it and illustrate how “disability” doesn’t really EVER mean being defined by that disability, and that it’s always a spectrum, not just “abled” or “disabled”… I don’t know.


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