Beauty in the Struggle
At age 4, Itzhak Perlman was struck by polio and his legs were severely paralyzed. Now well into his 60s, this amazing musician still uses crutches to walk on and off stage.
I entered Benaroya Hall on Thursday night without this knowledge and I was struck by the amount of effort that it apparently took Mr. Perlaman to walk on to the stage to perform. For those familiar with the symphony culture, you are aware that for some strange reason soloists and conductors walk off and back onto the stage multiple times before intermission and at the end of the performance. After seeing Itzhak Perlman slowly amble front and center for his initial performance, I assumed those traditions would be excused due to his limited mobility. I was wrong.
Not only did Mr. Perlman enter and exit the stage several times, he also awkwardly walked up a small set of stairs in order to conduct the symphony. As he approached the first of three steps and swung his leg out to lift it up on the step, there was an audible gasp from the audience. The gasp was in response to the seemingly unstable way that Mr. Perlman climbed the stairs, with most in attendance unsure that he’d manage to make even the first step up.
But, as I should know, those of us who have lived with disabilities most of our lives can often easily complete tasks that others think difficult (if not impossible) for us. There was a sense of relief as Mr. Perlman carefully climbed the stairs, plunked himself down on the chair and set his crutches down at each side.
As I left the Seattle Symphony performance that evening, I struggled to place words to what I had just experienced. Ask my friend, Elisabeth, that joined me that night. I tried to convey to her what I was feeling, but I’m not sure any of my words made sense!
It wasn’t until I was driving home that the words came to me. What I had witnessed was amazing beauty in the struggle. Had an athletic, perfectly ambulatory performer jogged out onto stage that night and played with the same perfection that Perlman had, I would have been impressed. But, I left that night with a level of gratitude and amazement that was only present due to the amount of effort that it seemed to take Mr. Perlman to simply get on and off stage.
(Check out an earlier performance by Itzhak Perlman below. In this video you can see the struggle in him walking.)
These past few days I’ve been thinking about what it is that makes beauty so stunning when it’s in the context of struggle. It’s the contrast, I suppose. The music was elevated even further by the fact that Mr. Perlman spends so much energy just getting from place to place. He could easily say, “I’m going to retire and rest.” Instead, he presses forward to be a great ambassador for both music and disability.
Through this experience I have begun to better appreciate what people mean when they tell me they see beauty in how I use my feet to complete daily tasks. It simply seems like survival to me, but there is likely much beauty within the daily struggle. This is so true for all of us – disabled or not. Now, my – and our – goal is to see that beauty as we are present in and push through the struggle.
A Taste of Disability
Morgan Spurlock, of Super Size Me fame, continues to create work that is not only entertaining but also informative. As you may recall, Mr. Spurlock attempted to eat McDonald’s food 30 days straight in the aforementioned movie. Well, he has continued to take a similar approach with his TV series, 30 Days.
Though the topics vary widely, from living on minimum wage to asking an Arizona Minute-Man to live with an illegal immigrant family, the approach remains the same – put someone in a unique and uncomfortable situation for 30 days so they can experience what had previously been foreign to them.
Now Spurlock has masterfully accomplished this task when it comes to giving us a taste of disability. In the segment below Ray Crockett, a former NFL player, is asked to live in a wheelchair for 30 days. What unfolds over the course of the show is the most insightful and honest perspective on living with a disability that I’ve encountered.
Ever wondered what it’s like to be me? I encourage you to watch the full episode just below.
Vodpod videos no longer available.
(Disclaimer: the segment is 43 minutes long and deals with intense topics. But, it is well worth the time if you are curious about the impact of disability on an individual.)
Although Crockett’s stint in a wheelchair was different from my experience of a life without arms, several points resounded loudly:
1. The burden on family members that have been pressed into the role of care-taking is extraordinary. Ray’s wife quickly experiences this and, in addition to the time and energy required of her, there is a heavy toll on their relationship as she shifts from the role of wife to caretaker. As I’ve grown older I have come to appreciate the extra energy that both my parents and my older brother exuded in helping me throughout my growing-up years.
2. As the doctor at the beginning of the episode suggests, I have experienced the dynamic of how store clerks will refuse to interact with you when you are with an able-bodied person. Even as I sign a receipt, a clerk will often make eye contact with the other person and hand them the receipt — virtually ignoring me.
3. Living with a disability requires a different train of thought as to how you function at home. Ray was fortunate in that he had the resources to adapt a car with hand steering, to widen doorways and to build ramps. Most people with disabilities do not have those same financial resources.
Although I feel I’ve done very well thus far — even to the point of living alone — it has been through much emotional and financial support from individuals and government resources. This is where the “pull yourself up by your own bootstraps” logic that dominates our society completely falls apart, in my opinion.
4. The desire to participate in activities that your body will not allow you to do is extremely frustrating. Ray recognizes this as he watches his sons play basketball and is impacted heavily by not being able to join them.
I’ve loved sports my entire life and have always wanted to participate in whatever way possible. My mom tells me that at a young age I came walking into the house crying, upset that I couldn’t join the other neighborhood boys in a game of basketball. This is not a just matter of not being good at a sport — it’s the physical inability to do something you love.
5. Disability complicates relationships and issues of sexuality, even if only in the mind of the person with a disability. As seen in this 30 Days episode, the mates of disabled people often say that disability is not a big issue or even something that they consider much, but it still weighs on the day-to-day interactions of intimate relationships. From the mate’s care-taking role to social pressures, the relationship carries an extra burden.
6. Life with a disability simply requires extra effort to complete daily tasks.
7. Ray’s mom suggests that people with disabilities don’t want you to ask them about what happened. Completely untrue! Ignoring the obvious physical disability is insulting and exhibits a lack of curiosity on the part of others.
Too Busy
“Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”
Psalm 46:10
Too busy to write, to study and to relax.
So much to be done — I’m just far too busy.
Too busy to go to church, to exercise or to do the dishes.
A mess: my kitchen and my mind share this in common.
Too busy to eat well and to take care of myself physically.
This pinched nerve in my neck serves as a reminder.
Too busy to plan my trip of a lifetime.
Italy beckons in the near future, but I’m too busy to plan for rest.
Too busy to pray or even to weep for Haiti.
If ever there was a time, it is now.
Too busy to feel; to feel for myself or for others.
A mind distracted has no emotion.
Why so busy, my soul?
What must you prove?
A man without arms juggling is surely entertaining, if not impressive.
Especially when he juggles so many balls at one time.
Making up for the wounded body God placed me in is tiring.
Maybe I was meant to live at a slower pace?
Maybe we all were.
But, that slower life is where the pain and mystery sneaks in.
It’s where emotions come in waves;
where I’m forced to wrestle with God.
In just being, I am forced to look at myself in the mirror.
Naked, not wrapped in my activities or achievements.
Forced to see myself as a person that cannot earn approval.
It’s a place I’d rather avoid.
And, well, I’m just too busy to linger there.
Too busy to sabbath.
Too busy to do what I desperately need.
Far too busy to be still.
Heard that Before
This past week I’ve been extraordinarily aware of the words and actions of people around me. Tonight, after calling in a pizza order, I pulled up to Domino’s as another gentleman was carrying his pizza out the door. He hopped in his car, where his wife was waiting, as I walked into the shop with my wallet on my shoulder. A few minutes later I turned around to see his SUV still parked, with both he and his wife looking at me through the storefront windows.
I thought it was odd, but it became even weirder when he started the car as I exited the building — both of them watching me intently the entire time. I got in my car while he backed out of the parking stall a couple spaces to my left. But, instead of pulling behind me and leaving the parking lot, he simply waited for me to back up and exit before he shifted from reverse into gear to exit out the opposite driveway. I guess I was completely fascinating to them — in the same way I assume I’d stare at an alien as it walked across the crosswalk in front of me. The staring from both he and his wife was not well disguised… not in the least.
It’s times like this where I wish I had a middle finger. I’d have used it on this guy!
And, oh, the guy at the Domino’s counter uttered a phrase I’ve heard many times throughout my life (see the first bullet point below). It was a f#$%@ing fantastic trip when it comes to dealing with the reality of my experiences without arms.
That inspired me to consider several of the phrases that I’ve heard consistently throughout my life:
– “Oh, I didn’t expect for you to be able to sign that.” Just what the guy said tonight. It’s understandable, considering you’re asking the guy without arms across the counter from you to sign a receipt! It usually leads to a decent exchange between me and the individual that states it, though. I offer that I’ve had lots of practice and the exchange usually ends with a kind compliment from the other person.
– “Which pocket is it in?” When I’m alone I have to ask a cashier to help me get my wallet out of my pocket. “Jacket pocket,” I answer. Most of the time I’m thinking to myself, “Do you think I’d ask you to pull it out of my pants pocket?!” They often seem relieved by my answer!
– “Are you cold?” This is the single most frequent question I get asked. The assumption is that I am hiding my arms inside my shirt because I’m cold. I would understand it — if I were six years old! From the moment I hear the question I can anticipate the horrified look on the other person’s face when I answer, “No, I was just born without arms.” There’s really no way to salvage the conversation at that point!
– “How are you going to do that?” Hey, I appreciate the honesty! Sometimes I’m wondering the same thing. More often than not, though, it is in response to something like how I’m going to pick up two bags of groceries at the same time. Again, I usually smile kindly and offer that I’ve been at this no-arms thing for a while and I have lots of experience. That’s often met with a blank stare as I complete the task in question. It’s usually only after I walk away that they snap out of their “WTF?” mode.
With each of these encounters I don’t necessarily hold it against the people who say these things. It’s not everyday that you encounter a person without arms. And, I’m not that sensitive that I’m offended by every double-take or odd reaction.
But, I must admit, sometimes it does get old. I’d just love to go a day or a week without hearing these phrases.
Sighs & Hallelujahs 