Let’s Talk About Disability

Some words seem to hold more power than others.  Joy, sorrow, mother, father, these words likely create an instant picture or sensation when you read or hear them.  Exactly what that picture looks like, depends on the experiences you’ve had with them in your lifetime.  Disability is one such powerful word, the shape and power of which is created by our relationship to it. 

Before becoming disabled myself, had I been asked I would have told you that disabilities are usually obvious, always challenging, and hard to live with.  My experience with disability was that of distance, I’d never really gotten up close and personal with it.  I hadn’t sat with it day after day.  I didn’t have personal experience with it.  It hadn’t occurred to me how many forms it could take, how it may or may not shape a life.  I was clueless to the existence of invisible disabilities.  If the term “dynamic disability” had been coined, I’d certainly never heard it. 

Years into being deemed disabled, my understanding of the word has both deepened and shifted.  I’ve come to understand both static disability (permanent disabling physical changes) and dynamic disability (disabling physical symptoms that come and go) on a very personal level.  The physical limits my body has do have a very real impact on my way of life.  There are things I just cannot do without some kind of assistance.  There are things I should not do because then I won’t be able to do anything the next day.  Some days I need a lot of help with everyday tasks.  Other days I can get by with the help of a few handy adaptive aids. 

Yet, even with all this personal experience, I admit, I still struggle to label myself disabled.  Somewhere along the way, that word took on a bigger, darker meaning that I cannot seem to shake.  It imposes limits, sets boundaries.  Disabled suggests I cannot. Can I open a heavy door alone? Not easily, no.  If I were to put my mind to it could I figure out a way to get it open?  My ability to escape most public bathrooms says yes, indeed I can and have figured out how to lever those heavy security doors open when necessary.

In fact, there are tools and workarounds for just about anything a person needs to do. Which makes it much less about what I can and can’t do and more a question of how much of a challenge it will be for me to do it. As my experience with disability deepens I see it both more and less clearly.  No longer is it so very cut and dry.  The line between able and unable, it turns out is blurry and depends on so much more than physical ability or lack thereof.

Perhaps that is why the label is one that I struggle with.  Nothing about it is simple, not even defining it.  It’s no wonder I struggle with using it to define my own existence. 

When you think about the word, disabled, what does that look like to you?  What feelings does it bring up?