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I jumped out of a plane last week. On purpose. For so long, I’ve been accidentally falling off stuff that I was curious about what intentionality would feel like. It’s better.
People have been asking great questions about the experience. The most common one has been, “When did it get scary?” Honestly, I was pretty freaked when the giant instructor man was stuffing my body into the very green jumping-out-of-a-plane suit. It was clearly not meant for my body type. I looked like Kermit and Miss Piggy’s love child. If the suit wasn’t meant for someone who looked like me, one must wonder, quite logically, if the activity was meant for someone who looked like me. Then, I got a little mad. I’ve been self-limiting for way too long. Because of how I look. Because of how my body is surgically held together by duct tape. But, mainly, because of the messages I’ve received from the world about how I look and how my body is damaged from illness and surgery. It is so easy to fall into agreement with the judgments of others. I’m beyond lucky to have countless family and friends who love me and believe in me. Still, it seems easier to believe the voices from my distant past. Every once in a while, to bring power to my voice and credibility to the voices of those who love me, I have to risk something. Rejection. Failure. Plummeting to my death. So I’m in a season of trying to live without self-imposed limits. I still feel afraid of a lot of things (and even more people). However, if everything feels risky, it’s possible that my gauge is malfunctioning. And, while I continue to work on repairing that gauge, I am going to have to take some blind leaps.
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My wife and I were so fortunate to get to travel to Barcelona recently. This was the fulfillment of a lifelong dream and the week felt magical. Surrounded by so much beauty (and ridiculous food), it seemed like a bubble was created where reality was temporarily suspended….with one exception.
It was hot, so very hot. I do tend to like the heat because my neuromuscularly-challenged body relaxes, but this means I wear shorts and my clunky leg braces are on full display. As we walked down the streets of Barcelona, especially in the less touristy places, I felt the stares. I began to get self-conscious and this momentarily pulled me out of being present and grateful. Here is a big “however”. HOWEVER, the people and the city of Barcelona were amazingly accommodating. The city had ramps, handrails, easy public transportation, patient pedestrians and benches everywhere. Plus, when I would enter a train or bus or whatever, locals immediately gave up seats for me. They even did so with overt grace and joy. What started as an awkward feeling transformed into feeling honored by these generous gestures. Then I noticed a rewinding of my too quickly formed beliefs. Initially, I was uncomfortable with the not-so-casual glances directed toward my braces. I believed they were looks of judgment or pity. Yet, it was their seeing the manifestation of my struggle that made available the opportunities for my needs to be warmly met. I’m not accustomed to this, thus my lifelong journey to not see vulnerability as a poison waiting for the chance to kill me. So I began to believe that the good people with whom we were interacting were curious about how to help, not how to judge. I began to believe that I was privileged to be seen. When this shift happened, other changes came quickly. I was more spontaneously interpersonal. I learned many people were admiring my cane and not just looking at my braces. I felt more connected to the city, the people, my wife and myself. I became more adventurous. I felt relaxed (to be fair, sangria and a total lack of responsibilities could have contributed to this one). It was so great to get home and see my kids (and my dog), but it was hard to come home to the place where my original beliefs about disability equaling inadequacy were formed. The airport alone sent me to a fetal position. I do love my country and I don’t pretend to know the culture of Spain after one week in one city. I’m just saying that we (myself included) can make it emotionally and logistically hard on people who have all kinds of disabilities. When that part of me is seen here, I feel the instinct to cover it up. I feel pressured to prove my competence and embarrassed to ask for accommodation. I know a lot of this is my personal struggle, but I want to also boldly state that the current climate of our country is strongly contributing to the dynamic. I would assume that anyone who reads this is personally connected to someone with some type of disability. With compassion and good timing, ask them about their experiences. Let it provoke you to a place of informed advocacy. Silence speaks agreement most of the time. As a person with a disability, I have been too silent on this topic and I’m imagining many of you have also been quiet for a number of reasons. So let’s talk. We can do it over tapas. |
Marshall LylesReflections on lessons learned from being a therapist and adoptive dad. Archives
June 2020
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