The most difficult part of this whole, “admitting I am disabled” journey, has been, well, admitting I am disabled. And, since I don’t “look disabled” usually I can pretend. I just hang out at home, or church, or at my “office” the wonderful LIVE cafe, and mostly in my bed, with my new best friend, “Lucille the Laptop” and pretend that my body is not disabled. (yes, I named my laptop after BB King’s guitar. I am a Chicago girl.)
But, as I am learning more about disabilities, I am starting to see that the idea and practice of thinking and acting like people that “being disabled is bad” is shitty, and it is especially shitty to those who are disabled. I am still figuring out the correct disability lingo (I have never felt more sympathy for people trying to figure what to call Black people: African American, Black, American, Negro (I think we should bring that back) I keep fucking up the disability language. I am one more writing of “special-needs” away from being blocked from one of my disability groups! I’ve been warned repeatedly. #iamaworkinprogress )
Anyways, being disabled doesn’t mean I am broken and need to be fixed; being disabled means I am different and need to figure out what accommodations and tools will help me live my best life.
I want to travel. Specifically, I want to travel to Mali and find the ancient text from the University of Timbuktu. My disability is going to make this difficult; but, not impossible.
The fact that I realize that my dreams of world travel aren’t over, they just need to be re-adjusted and planned very carefully is a huge step in the right direction.
I try and share as much stuff as I learn with people through my writing.
And this is an important lesson that I’ve learned that I want to share:
There is nothing wrong with being disabled.
Disabled people aren’t to be pitied or, even worse, “fixed.”
We all use tools to help us in life. If we were born 1000 years ago, people with glasses would be considered disabled, because they couldn’t see. But, glasses were invented, and now we know, a tool (glasses) can help someone live a better life, and there wasn’t anything “fundamentally wrong” them, nor, were they less than better-seeing people.”
My pregnancy caused me to be disabled. And for five years, doctors, family, friends, and everyone who loved me tried desperately to “fix me from my disability.” And, like so many other people with disabilities, I wasn’t able to be fixed medically.
Medicine and treatment, and love and fun, can help me live a better life; but it won’t “fix me.” I don’t need to be fixed because I am not broken; I am disabled. Nor, should I feel bad or do want people to feel bad for me because I am disabled, or different than physically from before.
The truth is, we are all one accident, one moment, one slip and fall away from permanently changing our physical limitations and becoming disabled. If that happens to you, like it to me and so many others, you are still the same person! If you can’t walk anymore, then you get a wheelchair and live your best life. If you can’t talk, because of a brain injury, you use the awesome assistant technology tools they have available to have conversations like Steven Hawkins.
Disabled people, can and many do, live fulfilling wonderful lives. Period. They use their “glasses” or tools and find ways to live their best lives.
Disability doesn’t mean broken; it means different.
And different isn’t better or worse, it is just different.
I’m working really hard to remember and practice this model of thinking with myself.