Disability Is Not A Bad Word. Today is International Day of Persons with Disabilities Day. I have some words.
The phrase, ‘Disability Is Not A Bad Word’ comes from the need to tell society that, yes, we may be disabled, but this does not mean our lives are smaller than yours. That we are not smaller than you. It means we are not monoliths or riddled with only sadness-void of agency or worth-as you may immediately suspect. It means we are full multi dimensional beings with abilities, desires, contributions, passions and dreams, and the capability to inspire love and eroticism. It means we have all the same range of emotions and quality of living as non disabled people.
Disability Is Not A Bad Word also comes from disabled people needing to realize that even though you’re disabled, it doesn’t mean it’s the end of your life/even if it may feel like it at first.
I can’t lie and say this is easy or that I love disability. I don’t subscribe to the advocacy that only shows the highlights because so many of us aren’t there. I do love who I’ve become because of it, though, or maybe it’s the person who was always there with the depth unearthed by these sequence of events. But it isn’t easy. There are days I’m emotionally destroyed. It’s unbelievable, and this thing isn’t done with me yet.
A progressive disability is unlike a stagnant one. I’'m not saying it's worse, because everyone's height of the disability THEY experience should NEVER be compared to others, but since I've had the benefit of experiencing many stages of disability, this is my experience, and of course, if given the choice, I would prefer one that doesn't keep going until it completely erases me physically. Constant loss is surreal. It's difficult. Losing my legs was hard, but it's been nothing compared to losing the full function of my arms...and now the fingers that draw and write these words. Having to be fully aware to hold my neck up or suddenly noticing the strength required to breathe is sobering.
So often it feels like I'm fleeting away. This is why I live like I do - for the next few months or year at a time - because who knows how much time is left...for any of us.
So, yes, it’s been hard, but it isn’t all of our story, and I’ll be damned if our experience be taken by a non disabled world who pities us, and tells us to stay home because our life is over or we don’t deserve access. It isn’t. It’s just different. And we do deserve equity and equal access.
Without my rare muscle-wasting condition-the sounding alarm of accelerated falling sand in the hourglass of time-l would not have traveled the world, like I have. I would not have become a writer and an illustrator, like I have. I would not have learned the strength of vulnerability. Maybe I would have. Who knows how time would have traveled. None of us can. But it wouldn't have the same origin of meaning.
The problem for so many of us, including myself, is we have an idea of how we want our life to be, and when it isn’t quite that, we’re shattered-unable to move to move passed it. But we have to remember that life is about adaptation. I’m a designer, and much like a design, you have to take all the elements provided to you, analyze, and then build something new.
I don’t believe in fantasizing about a life that is going to be perfect after this one. This life was given to do something with it in this life-not holding off to live for the next whatever one believes in. And so I live. And so can you. Though there are many days I feel curled up in a corner of a dark cave-days I’m not sure if I can keep going-I’m doing my best to shine my own light through it, and you can too.
Disabled people have to fight so much more just to live because of inaccessibility, but also because of a body or mind that isn’t typical or provides so many more layers that require extra persistence and drive just to live. It becomes a personal call within you, from you, saying, “Don’t give up. I want to see the height of who you are as a person—the sacred parts of you many don’t have to dig far for.”
This condition has required unbelievable personal strength to not only keep going, but do so in style and grace in an inaccessible world. It’s been a challenge, but I’ve lived my life… and I’m just beginning. There is a momentum happening with my creative style, my inner deep self, and I’m going all the way, baby. So can you. I love you.
For more ♿️ travels, disability and accessibility musings, mini-memoirs @ https://Instagram.com/kamredlawsk