Back in Time with the Words We Say

I've been reading the Anti-Ableist Manifesto by Tiffany Yu, I wasn't even 25 pages in before I decided anyone who knows me needed to put it on their reading list. There are lots of good topics in the book that I plan to share my perspective on and have in one way or another. But, here I'm going to get into the words people say around disability and my experience. 

First, let me say that I'm no disability language expert. In the past year alone, I've learned more about how much terminology has changed around disability. When I was a kid I participated in a program called the Handicapped Sports Program, which was a sports program for kids with disabilities. Since then, many in the disability community have moved away from the word handicapped. 

The gist I get with that word and other words that have been commonly used to describe being disabled (like differently abled) is that they imply that there's something wrong with being disabled. My experience is that a lot of people treat being disabled as something that's wrong with a person. 

Uncomfortable yet? Now, I invite you to think about the following. Between living with Cerebral Palsy and my other adverse childhood experiences I've had to work really hard to overcome a sense of wrongness with my existence. I regularly say that I live and work in your world (your world being a world designed for non-disabled people). 

But, here's the thing, how we use language ebbs and flows. I've used both the terms above to describe being disabled because as a disabled person I've used the terms that are used around me. And I've only spent about fourteen of my forty-one years connecting with the disability community. 

I didn't spend most of my life thinking it was good to acknowledge my CP. I wasn't supposed to be tired at work because I was “too young to be tired.” Like a lot of alcoholics have to justify not having a drink at parties, I've had to justify why I can't, don't feel comfortable, or don't want to participate in certain physical activities. 

I definitely never thought twice about the common descriptors used to identify me as disabled. I thought a lot about the name calling and intentionally derogatory words used to describe me growing up. And, I never gave thought to the idea that one saying I'm an inspiration is potentially a microaggression as Yu suggested in the book. 

Am I an inspiration because I work the 9-5 grind with a lot of other people, even though I was told I couldn't work? Am I an inspiration because I survived my own existence to this point? Am I an inspiration because I'm too stubborn to quit trying to prove myself to other people (whether I care about them or not)? I've heard that I'm an inspiration a lot and I've always taken it as a compliment. If my life inspires you, great! I can't imagine why it would because it hasn't been easy or a lot of fun. 

I never imagined myself talking about living with CP or the intersectionality because it's just my life and for a lot of it, I wished it wasn't because I wanted what I thought you had. Happiness, joy, freedom, independence, love, respect, strength, and I could go on. But my point is, while I'm here shedding light on my lived experience with Cerebral Palsy and intersectionality, I'm still learning about it every day.

I'm learning how to articulate this differently. I've misunderstood some of the defining language for CP when it comes to my diagnosis because I've had to reconstruct it for myself without early medical records to tell the parts of the story I can't remember. 

I've called CP a muscle disorder because it impacts me physically, but it's a neurological condition that impacts the muscles and motor functions. My own use of terms for the disability I've had since birth is still growing. And, after 22,000+ words written on life with CP and more, I think it's probably clear that I understand language. 

My point in writing this post that's prompted by a book I think you should read (see above) is that life is a process and a journey whether you live with CP, another disability, adverse childhood experiences, are non-disabled, or are simply human. I'm not less than you because I have CP. I'm also not better than you either. 

My life wants and needs are incredibly simple and the journey to get remotely close to them has been anything other than simple. I've built an amazing career in librarianship, but I failed in a career in ministry. I chose to chase more for myself and went through the process of fighting the government prognosis that I couldn't work because of CP. I traded being trapped in government assistance for being trapped in student loan debt because I wanted the life I thought you had. I wanted the house, the car I can't see well enough to drive, and the love I've longed for more than anything else. If any of that resonates with you, it's because I'm human just like you. 

Being disabled doesn't make me better at saying things correctly for disability awareness. It does give me a first hand account of what it can be like to live life doing the same things that millions of people do, on different terms like another set of millions of people. We can all learn more about what it's like for one another.