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Posts Tagged ‘disability’

Throughout OT school, we have discussed the idea of whether disability is something that lies within the individual or if it is a result of the environment.  It’s a riveting discussion.

Aimee Mullins has personal experience with this.  She was a Division I track and field athlete at Georgetown, and is now an actress and model.  Oh yeah, and when she was one year old, she had both of her legs amputated below the knee due to a congenital birth defect.  Most people would say she’s “disabled.”  But she doesn’t feel like she’s disabled.

Last year, Aimee was a speaker at the TED MED conference in San Diego, CA (TED is a nonprofit that distributes talks on a wide variety of subjects at http://www.ted.com/TED MED is a separate organization that licenses the TED logo and focuses on medical and health care related issues) and, according to her recent feature on CNN.com, she “explored the concept of disability and talked about how overcoming adversity is something everyone must confront, in one way or another” (3/9/10).

This is her talk:

At the end of her feature article on CNN.com, Aimee said:

I’m not an advocate for disability issues. Human issues are what interest me. You can’t possibly speak for a diverse group of people. I don’t know what it’s like to be an arm amputee, or have even one flesh-and-bone leg, or to have cerebral palsy.

I don’t speak for such huge and diverse groups. What I’ve tried to do, what I’ve been fortunate to do, is to live my live and create my life as I’ve wanted to create it. To be able to live with such an autonomy has itself raised awareness.

You can read the entirety of her feature article on CNN’s website here.

Hopefully, more people like Aimee will continue to contribute to this kind of discussion so that we as a society can move forward in understanding that it’s not so much a matter of properly addressing the narrow category of “disability issues”, rather, these are human issues that require us to recognize that, disability or not, we must all overcome adversity at some point in our lives.

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Today I had an interesting experience.  Surreal, almost.

As with most Fridays, I planned to take the campus bus from school to the train station, and then take the metro (a subway-like entity) from the train station to home.  While standing at the bus stop, exhausted from both the long week and from the heat of the late summer, I learned that I had about 45 minutes until the next campus bus was coming.  I decided to walk to the library to go pass the time sitting in the air conditioning and clicking around on some mindless websites on one of the campus computers.  As I began meandering down the hill, I noticed a man in a wheelchair who was being pushed up the hill by two healthcare professionals (medical assistants or maybe nurses, I guessed).  I’ll call him ‘Juan.’  Once the two women got Juan ‘parked’ near the bus stop, they quickly turned around and hurried back in the direction from which they had come.  I passed Juan, making sure to smile and say hello, but not to linger and stare (I am an Occupational Therapy student, after all, and isn’t that what we’re supposed to be good at?  Not assigning labels or judgment upon people?  Knowing how to act around people with different abilities and conditions?  I say this sarcastically because, yes, we should but, no, we don’t always know.  At least I don’t yet.).

I continued walking, all the while guessing that he was about my age – mid- to late-20’s – and wondering what led him to be sitting in that wheelchair on this particular day.  An accident?  Was it recent, or did he experience a traumatic childhood injury?  He seemed to have good use of both of his arms, but that darn hill was just too much for him to handle on his own.  Was it an illness? Did he just have surgery?  I remember being in a wheelchair after I had broken my leg and had surgery.  But I didn’t have a catheter, though, and he had a catheter bag hanging under his chair, so maybe he injured more than just his leg.  His head looked like it had been shaved several weeks ago, and he did have a fairly sizable incision or scar on the back of his head.  Maybe he did have an accident.  But the university hospital is right next to the bus stop, so maybe he  just finished a check-up of some sort and he’s fine, and now he’s heading home for the day. Such were the thoughts swirling around in my head.

Upon reaching the library, my mind quickly shifted to how pleasurable the temperature of the air conditioner was and where in the world I could find an unoccupied computer.

A little over a half hour later, I left the library and headed back up the hill to the bus stop.  Juan was still there, sitting out in the open sun. How miserable, I thought to myself, it’s so hot out here.  I can’t believe he’s just been sitting out here in the sun the whole time.  Maybe he wanted to.  Maybe he didn’t, but the two women who brought him here didn’t really care because they had other things to get to.  Bummer.

Upon the bus’ arrival, everybody at the bus stop boarded, including Juan.  I took a seat toward the back of the bus, behind the area where Juan and his chair had been secured in the ‘wheelchair accessible’ portion of the bus.

As the bus lurched forward and then made it’s way around the first corner, I noticed that Juan and his wheelchair weren’t really that secure.  Maybe his brakes didn’t work, or maybe the bus driver hadn’t properly secured his chair into the harness system.  But whatever the case may be, Juan and his chair were in for a hectic ride.  He grasped for stability, one hand on the overhead rail, the other on the seat next to him.

In that moment, I had no idea what to do.  Do I offer to help him?  I’m a pretty small person, though, and I might do more harm than good.  I may just end up getting run over by the wheels and actually getting in the way, and embarrassing him.  Maybe I’d embarrass him anyway simply by offering to help.  I don’t want to embarrass him.  Do I stay in my seat and keep an eye out, and then jump in to help if it seems like things are getting out of control?  Do I just stay where I am and allow another passenger to help him if it looks like he needs it?  There IS a grown man sitting nearby who helped the bus driver operate the wheelchair lift and get Juan into the bus successfully.  Maybe he’ll be inclined to help, and he’d probably do a better job than I would anyway.

Do you see the conflict brewing in my head?

In my mind, it had to do with the dignity and freedom, concepts that – I have learned – are official core values of Occupational Therapy.  Dignity has to do, in part, with maintaining an attitude of respect toward others and nurturing their sense of competence and self-worth.  Freedom, in this sense, relates to people’s ability to freely choose their level of independence as they find a balance between autonomy and interdependence in pursuing activities that are meaningful to them.*

My education in action.  Or maybe, more appropriately, inaction.

So as I sat there, fighting this battle in my head about whether I should help or not, I was frozen with indecision.  As iterated above, I didn’t want to jump in and offer to help if it would only solidify the notion that, yes, he was in a wheelchair and, yes, he was unable to help himself.  Sometimes even the offer of help can be belittling to people.  Maybe it was important and meaningful to him that he could take public transportation independently, without relying on nurses or family or friends.  The fact that he was a strong, young man made me suspect that he would probably want to get through this episode on his own.  From my experience, men like to get through difficult situations on their own, to take care of themselves without help from anybody else.  Maybe that was how Juan felt.  I wanted to respect his dignity and his freedom.  I wanted him to be able to get through this bus ride the way he wanted, in a way that would honor his independence.  But I wanted to help.  Oh, how I wanted to help.

In the end, I decided to to stay in my seat and keep an eye on things.  Juan seemed to manage himself okay, and so I didn’t want to jump in and offer to help, for fear that it would serve as a blow to his ego and frustrate him for the rest of the day.

As our bus pulled into the train station, I noticed that Juan began scanning the area in which our bus would soon be stopping.  Looking for an elevator, I thought to myself.  I personally had never seen an elevator that could take passengers down to the underground station, only a great multitude of stairs.  I couldn’t imagine how difficult it must be to try and find an elevator in such a bustling and expansive environment.

But here’s the part that gets me.

Just as I was considering about how difficult it might be for Juan to find an elevator and get to his train, another bus pulled in front of ours.  On the back of the bus was written this:

Elevators are for wimps.

Seriously?!  Does it really say that?!

I quickly scanned the back of the bus to see if I could tell what type of product or program it was advertising.  I couldn’t tell.  But at that point, I didn’t care.  The timing was just too surreal.  What if he saw that quote? I thought to myself.  What kind of message is that sending to him?  Not only has he had to endure this hectic bus ride and maybe feel embarrassed by the fact that he and his chair are being jolted around, but now the words on the bus in front of us are telling him that elevators are for wimps.  What is he supposed to do with that?  Just brush it off and go on as if nothing happened?  Ahhhhh!

And then I got off the bus.  As I crossed the street, noticed that there was an elevator nearby, and I hoped that Juan would see it too.  I descended the stairs, found my platform, got on the metro, and went home.

I don’t know what happened to Juan.  I don’t know where he was headed, or how he felt about his bus experience.  Maybe he was proud that he had made it through the turbulence on his own.  Maybe he was annoyed that no one had offered to help him.  Maybe he was fine, and I was overthinking it all.  But regardless of how he felt, I realized that striving to help someone maintain dignity and freedom in the face of physical disability just might be harder than it seems.  And maybe it is something that you can do the most effectively only by getting to know that person, and the things that are important and meaningful to him or her.  These are things I’m sure I will be considering as I continue in my Occupational Therapy journey.

So what about you?  What do you think about all this?  And how do you strive to help promote dignity and freedom in people’s lives?  I know there are more ways than one.

*My descriptions of dignity and freedom are loosely based on the article written by Elizabeth Kanny and Ruth A. Hansen, “Core Values and Attitudes of Occupational Therapy Practice.”  It can be found in a 1993 issue of the American Journal of Occupational Therapy.


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