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?

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11 thoughts on “Am I disabled?

  1. This was beautifully written. I took a class that talked about this idea and also talked about the definition of the world normal and applied the same critical view to mental illness.

  2. I never thought about this before reading your article, but throughout my life I’ve endured excessive perspiration coming out of my upper body and hands. At first, I thought it was a normal part of life everyone had to face. However, when people started commenting on my sweaty hands and armpit stains I began to believe I had a problem most people did not have to cope with. As my temporary solution, I wore undershirts and wiped my hands on my jeans whenever I anticipated a handshake or an amorous hand holding.

    But this did not prove effective, the sweat poured out of my undershirt and onto my top layer of clothing. I couldn’t always anticipate when I had to shake hands either, and I couldn’t hide my façade if somebody wanted to hold my hand for longer than 20 seconds. The sweat kept pouring down like the Iguazu falls, creating a huge stream about my underarms and expanding throughout the day like the universe itself. I desperately looked for other solutions; I bought clinical deodorants to stop excessive perspiration. My sweat glands, infuriated at my attempt to contain the watery fluid inside my body, responded by unleashing a tempest of sweat down every layer of clothing I armed myself with, effectively embarrassing me in front of my peers. I stuffed tissues between my armpits and my undershirt. My body laughed at my feeble attempts and infiltrated all barriers before I could sit down, relax, and enjoy a tuna sandwich. It was like trying to stay dry in the middle of the monsoon with a long island ice tea umbrella.

    I swore I would get rid of the sweat and I platitudinously dammed god for bringing me sweaty shame every day. How many times did I want to put my arm around a girl or stretch out my limbs confidently? How many times did I want to answer a question in class but shied away because I did not want to flash a big wet spot of disgusting salty secretion to my professor? How many times did I rush out of meetings so I could go to the restroom and wipe my incessant curse? How many times did I just want to feel like a human who could move around without having his arms glued laterally, parallel to his body?!

    I exercised daily, I crammed baking soda on my sweaty body every day, I bought a myriad of shirts to replace the old deodorant-stained threads… I cried, not of sadness but because sweat was coming out of my eyes (thank you Flight of the Conchords for understanding me). I moved to Denver, seeking a dry climate to assuage the damp plague. A FOOL! A cruel irony, I sweat more in drier climates.

    Oh by the way, I really like your articles and what you are doing with this website Jo Andrea, keep at it!

  3. good job jo andrea!!
    what you said here sums it up for me well:
    “So, the truth is the different between “able-bodied” and “disabled” is not nearly as important as the difference between an abled spirit and a disabled spirit.”
    and “…differently abled.”
    for now, i’m fine with disability with people who don’t think so deeply about this stuff. because if they encounter these abled spirits, then they’ll figure it out and then a whole conversation about this stuff will break out. 😉

  4. I have been chronically ill for the last ten years (bedridden/housebound for most of that time) and although there is technically nothing wrong with my legs, my illness is so severe that I am unable to stand/walk unaided and need a wheelchair for any distance greater than five or six meters. Despite this, it has taken years to accept myself as ‘disabled’ as my relapsing-remitting condition could theoretically improve in the future. I have two paralysed friends for whom improvement will never be possible. No one would hesitate to describe them as disabled and yet on a day to day basis their conditions are far less disabling than mine. I am largely confined to bed, rarely leave the house and depend on carers for my basic daily needs while my paralysed friends are perfectly healthy and independent, capable of full time work, shopping, travel, sport and a whole host of things that I can only dream of.

    There has been a lot of rhetoric since London 2012 about the paralympic legacy in the UK. While it may have raised the profile of disabled sport it has also raised the bar of what disabled people are expected to achieve. In many ways this has made life harder for people with ‘invisible’ disabilities like my own. I have lost count of the number of times I’ve been told that if a swimmer with no arms can earn a gold medal and a guy with no legs can break a world record, there is no excuse for any disabled person not to achieve just as much as anyone. For those facing a lifetime of incurable illness, this kind of attitude isn’t exactly helpful.

    • Thank you so much for your comment! This is something I hadn’t really thought about before and it’s a really good point. I think that most people who read this blog would agree that everyone’s disability is unique and just because someone with a similar injury or illness as you can do something, doesn’t mean you can! Even people with spinal cord injuries at the same level can have different abilities, and that doesn’t vary as much as between people who share the same diagnosis of MS, or stroke, etc.
      I hope I didn’t make you feel like I was saying “there no excuse for any disabled person to do more.” I think that’s an awful thing to say to another person when they haven’t walked in your shoes. Trust me, I get it–people try to tell me all the time what I should and shouldn’t eat. I couldn’t politely describe how much this bothers me, but it’s usually coming from a good place. Healthy people don’t always understand that they are healthy because they are lucky, not because they live the ‘right’ way.
      If anything, I hope you got the opposite sentiment from my post: What other people can do, has absolutely no bearing on what you can accomplish. Further, what you have been able to do in the past, has no bearing on what you can do with your future.
      What you think you can do is far and away more important than what other people think you can do. And I think people in general–not just people with disabilities–underestimate themselves. So I hope that this post will in some small way encourage people to try something new because you just might surprise yourself.
      But you are absolutely right. Everyone has their limits and it’s unfair to hold anyone to someone else’s example. (Not every able-bodied person is an Olympian!) It’s probably something more people should be sensitive about. I will certainly take it to heart. So I sincerely thank you for taking the time.

      • I wasn’t for one moment suggesting you shared the attitude that all disabled people should be capable of superhuman feats – I just think it is an important issue for people to be aware of. It is so easy to compare people (disabled or otherwise) in apparently similar circumstances and expect them to conform to what we think their abilities or coping methods ought to be. Thank you for starting such an interesting discussion.

      • This has been my favorite discussion too. I hope people continue talking about it–it’s really interesting to hear other people’s point of view. So thank you for being a part of it!

  5. I think the distinction is what you are willing and able to do. Your fears could be just as difficult as a physical disability. Therefore a disability could be very broad if it is about what really stops you and takes away your ability to do something. My physical disability has been less of a challenge then many mental stigmas I have had to overcome in other people’s judgment of what I could do and how I let that creep into my mind and have me question myself. When we live with confidence and understanding we can do whatever we put our minds to then we won’t consider calling anyone disabled, we will say they have the opportunity to overcome a challenge and we will honor them not try and keep them from getting hurt.

    • “we won’t consider calling anyone disabled, we will say they have the opportunity to overcome a challenge and we will honor them”.

      I LOVE that Paco. I spent some time on your blog and your incredible way with words makes sense now. 🙂 I really think that quote should be the definition of disability in dictionaries! Or at the very least it should be painted on the side of a building somewhere.
      One thing that really struck me, both here and in your personal blog posts, is how you’ve had to overcome mental stigmas and question yourself. Particularly in your Glass is half empty/full post–it’s a different way of thinking for me.
      Thank you for sharing. I really enjoy reading these comments, especially for this post, because everyone seems to have a different and fascinating prospective. It’s really neat to see and learn from everyone!
      Thanks again!

      • If you haven’t already please also visit my facebook page and share it, https://www.facebook.com/#!/pages/Boy-Without-Legs/109338142451579 On that page is a video by Aimme Mullens I posted recently and she talks about changing the definition of disability, very inspiring.

        Thank you for contacting me W.T. My purpose on this earth is to help people by changing opening their hearts and their minds. I cant change it but if it is open I can at least plant a seed that can grow into a new idea. I love talking to people, so feel free to talk and share with me. And I am honored you opened your heart a little and allowed me to plant a seed.

  6. Pingback: Starstruck: Halle Berry | World Travaillers

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