Am I disabled?

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:

  1.  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?
  2. 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?
  3. 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?

Starstruck: Debbie van der Putten

I am so starstruck for Debbie van der Putten and you will be too!

Meet Debbie

Look at this photo and I challenge you to find a single imperfection.

Debbie became a model after a freak accident and a totally unpredictable chain of events. She has graced the pages of Elle Magazine, Playboy, and Cosmogirl. Still haven’t spotted her disability? I’ll give you another chance:

Maybe you caught it this time. Debbie lost her arm in a bus crash before she ever thought of becoming a model, but  her photos prove that she is first a model and then an amputee.  When I look at this picture I see an absolutely stunning woman with an expression on her face that completely draws you in. It’s only when your eyes drift away from the picture that you might catch the missing arm–a complete afterthought.

It all started in 2005… During her rehabilitation, her doctor encouraged her to participate Holland’s upcoming beauty pageant for disabled women: Miss Ability. This is where she walked her first catwalk, and though she did not win, her life would be forever changed. From this exposure, she was given the opportunity to pose for Dutch Playboy as the first amputee in Europe! (She did it!)

She continued modeling for charities until she was asked to be part of the Britain’s Missing Model–a reality show where 8 women with disabilities compete for the title. She didn’t make it too far in the competition, but it did start her on a new leg of her journey. Through this experience, she became the spokesperson for Models of Diversity–a non profit in London that advocates for all types of models regardless of their ethnicity or their physical abilities.

As the above video shows, Debbie was part of the Paralymic coverage in London last year. She is still modeling while pursuing her current endeavors to make disability more mainstream and to change perceptions.

She is also focusing on her own campaign: IM-perfect (it looks like the new site is under construction, but you can check out the old blog)

Initially I found it hard to accept. I now belonged to a group of people who I thought were lonely. I thought I could forget about ever feeling pretty again; I was disabled.

But then I looked up the word ‘disabled’ in the dictionary. The definition lists words such as lame, defect, weakness and lack; words which definitely do not describe my personality!

Knowing I was so much more than a label that society lumps people with; I wasn’t going to hide away. – Debbie

Debbie never felt comfortable wearing her prosthetic arm, so she doesn’t. She walks down the street unapologetically and models on an international stage; she  faces her disability in such a public way so she can be a role model for others, to let them know you can be disabled and beautiful. Or rather, first beautiful and then disabled.

You can follow Debbie on her blog twitter or facebook.