In my last post I did something a little controversial. I suggested Halle Berry was disabled. I did this intentionally to see your response and to make you question what exactly “disability” means.
When I first started this blog in January, I thought “disability” meant amputees, spinal cord injuries or other mobile-challenged individuals, blind and deaf people (I’m a scientist so we’ll call this Hypothesis 1). But something personal and unexpected happened that completely altered my way of thinking. I haven’t spoken to anyone about it before . So Mom, Dad, listen up. 😉
As you know, I have Crohn’s Disease. I lived with it for upwards of ten years before being diagnosed, and I never once thought I was disabled.
For those of you who don’t know what Crohn’s is, it’s an autoimmune disorder of your digestive tract. In terms of symptoms: imagine your worst case of food poisoning. Any and all of those symptoms are fair game, 24 hours a day, every day of your life.
I went to college and my first semester: I never felt worse in my life. I had absolutely no social life, no friends, and I sat in the back of all my classes hoping the professors didn’t notice me crying silently in pain. Still I didn’t see myself as disabled. I sacrificed eating entirely just to make it through finals. (And I’m Italian. You don’t want to get between me and my food! That’s how buckets get kicked)
After surviging college, my view of myself changed. We all strive to be productive members of society and the community and I began to see all the things I couldn’t do. I felt like I couldn’t do anything. For example, I dread long drives and traffic—imagine drinking water from Mexico before your commute every day and you might begin to understand my fear. So on top of the pain–that anyone who’s encountered the disease will call debilitating—I also had this debilitating fear. And to me, it’s completely rational.
Trying to better equip myself for the working world, I read an article titled something along the lines of “The Workplace and Crohn’s”. Very original. But what it said is that disability laws dictate that an employer must accommodate your needs so long as they are reasonable, and it suggested requesting a desk near the bathroom.
That was the first time I was called disabled.
Sure it was by an article, authored by someone who didn’t even know me. But after the shock, I began to realize it was right: I am disabled. It has less to do with what I’m physically able to do, because I can go up a flight of stairs like a ninja. But some days, I can barely get out of bed. This didn’t fit my original definition of disability, so maybe it was wrong.
I put those thoughts aside while writing this blog these past months. I wanted to gear it towards people with disabilities, to empower people, to give them the information they needed to travel and experience the world. But that felt too limiting because I wanted to help other people like me and I wasn’t sure if they belonged in that category. And then I finally figured it out (or so I thought): EVERYONE is disabled (Hypothesis 2). Hear me out: some people physically can’t get around or navigate their environment alone, but some people are disabled by fear, past experiences, relationships, responsibilities, mental and psychological conditions, their current situation, etc. Whatever baggage you carry, whether physical, emotional, or mental, that is what is limiting you, disabling you.
But I had an issue with this theory, too. The stories and blogs I’ve read and the people I met at the Abilities Expo—they all had a physical disability in the traditional sense of the word, but they accomplish way more than just about any able bodied person I know! Their disabilities might as well be an afterthought or a forgotten footnote, because describing them as disabled just doesn’t feel right. Just look through our weekly Starstruck series!
So what does that mean? No one is disabled??? Hypothesis 3.
FINALLY, I think I figured it out! Let me ask you the same 3 questions from my last post, about where do you draw the line between disabled and not-disabled:
- Is a stubbed toe a disability? – How about a broken toe? A deformed toe? A limp? A missing toe? Two missing toes? Does it matter if that person’s job is a dancer? Well check out Team Hot Wheelz, a group of wheelchair dancers, working the crowd; are they disablied?
- How about carpel tunnel syndrome? — Talk about the most boring work-related injury. But if it’s so severe that you can’t type for your job, is it a disability? Is it a disability if typing isn’t part of your job description?? What about Jessica Cox—she has no arms but she can type. Is she disabled?
- Or a good old fashioned zit? – Is a zit a disability on a supermodel? Debbie van der Putten is a successful model but she doesn’t have a right arm; is she disabled? How about a skin tumor? What about this man (warning: graphic images) who has neurofibromatosis and every inch of his body is covered in tumors. He can run, jump, see, hear…but he can’t go out in public.
My point is our physical abilities are on a sliding scale. We have no system or definition in place to differentiate at what point you qualify as disabled. And my second point (I have two) is that some people traditionally considered “disabled” are accomplishing more than ever before, and more than their “able-bodied” peers. They don’t think of themselves as disabled, and they aren’t. They are differently abled. I am able to write with my right hand; my dad is able to write with his left. We are differently abled but equally abled.
So, the truth is the difference between “able-bodied” and “disabled” is not nearly as important as the difference between an abled spirit and a disabled spirit. I think the later is the true definition of disability.
Hypothesis 3—disability refers to a person’s spirit as least as much as, if not more than, to that person’s body—is my going theory. There are too many people who have inspired this new outlook of mine to properly give them all credit, but there is one person in particular who I must acknowledge: Aimee Mullins. Her TED talk, below, was just the Aha! Moment I needed to put together my personal going theory. I really, really strongly recommend you watch this video.
Like I told the brave soul who told me they thought I was wrong to call Halle disabled, “disabled” people are showing just what they are capable of and are challenging what it means to be disabled. It is through challenging these beliefs and perceptions that people like me have had to change their definition of disability.
Please join the conversation and leave a comment. If you think I’m wrong, please explain it to me. I’ve been excited all weekend just to hear your thoughts on this so comment, share, ask others what they think. I think this is such an important question and there is no good, concrete definition out there. It’s up to US to define it, and we do that together. So…what does disability mean to you?