I Miss My Bubble

There was a time, several years before I traded small-town life for my bustling urban lifestyle, when I believed the world was an essentially happy place in which to live. Ableism was a term I’d never heard, and even though I faced and recognized discrimination occasionally, it seemed far too rare to form a pattern. My community was a generally accepting, accommodating one, and I expected the rest of the world to reflect it. If I’d begun a blog back then, it would have adopted a tone that suggested most people with disabilities had little right to complain. Life wasn’t so bad, was it? My personal experiences certainly didn’t indicate that everything was terrible, and I, cozy in my cocoon, couldn’t understand what all the fuss was about. If you’d asked me about my place in the disability community, I’d have shrugged and said, “What community?” Blind people, in my limited view, were a largely grumpy lot, and I didn’t think they really had the right to be so.
Today, however, I’m as grumpy and disgruntled as just about everyone else. I’m not a combative or pessimistic person, but even I can’t escape stabs of despair and intense annoyance when someone congratulates me for living on my own, or navigating my workplace, or behaving as any woman my age would be expected to behave. I cringe when people try to explain my own disability to me. Ignorant comments on social media set me ablaze, even though I know it’s not productive. I experience regular urges to indulge in a primal scream or three. In essence, I find myself in a perpetual state of annoyance. Why must the able population be so silly? Discriminatory? Ignorant? Rude? Disrespectful? Why?
And so, burdened with this tiresome emotional landscape, I find myself longing for a simpler time, clichéd as that may sound. My soul yearns for a time when my attitude toward sighted people was almost universally positive. I excused even the most egregious behaviour in the name of understanding and empathy. I overlooked inaccurate and damaging viewpoints because I “get where they’re coming from.” I remained astonishingly cordial when confronted with statements like “I don’t see how you’ll ever get married and raise kids…” or “It’s a pity you’re blind, but at least you can sing…” and “How can you work?” I simply did not realize how poisonous these ideas could be. Mostly, I let them roll off my back, and since grumbling about them wasn’t encouraged, I shoved the hurt I did feel into a cobwebby corner where uncomfortable feelings go to die.
Now, I’m forced to re-evaluate my worldview. Much as I’d like to remain in my comforting bubble, I encounter too many first-hand obstacles to pretend all is well any longer. I’m learning, quickly but grudgingly, that yes: it really is that bad. No, living with a disability isn’t nearly as arduous as people imagine, but it still comes with a whole host of challenges. Further, I’m also learning that just because I haven’t come across a particular issue doesn’t mean it’s unworthy of consideration. The fact is, I’ve been lucky, and insisting that disabled people should take a chill pill is akin to ignoring my own reality, and theirs.
I’d be remiss if I didn’t mention the hysteria and unnecessary combativeness I see in the disabled community, of course. Some people seem to live for the chance to rant passionately about every imperfect able person they meet. It seems as though some of us have turned defensiveness into a learned behaviour, such that it’s become a knee-jerk reaction. Any attempts to bring empathy and nuance into the conversation are dismissed, sometimes with a vehemence I can’t imagine having the energy to muster on my best days. Our complaints are usually justified, but many of us, including me, are guilty of jumping to conclusions and making life more difficult than it needs to be. This is why I work so hard to cultivate an ultimately kind, measured perspective in my writing and my everyday life. To do otherwise goes against everything I am.
Even so, there is plenty to be upset about, and some days I don’t feel equipped to handle it all. A frightening brittleness accompanies me far too often, so that I feel as though I will either cry or snap if one more person grabs me without my permission or sulks when I turn down their assistance. I’m not sure when I became so volatile, but while courtesy and reason tend to win the furious battle inside my head, I expend far too much energy in the process.
I miss my bubble. I am tired and anxious and insufferably irritable, and I hate it. One of the things I’m unable to stomach is being in a bad mood for too long. Grumpiness and outrage just don’t suit me. I miss being able to shrug off even the nastiest comments and laugh at everything else. Surely there is a middle ground between priming myself for misery and retreating to a safe but unhealthy state of blissful ignorance. There has to be a way to pick my battles without feeling so desperately conflicted and exhausted.
I’m going to be okay. I know, from watching other disabled people, that time will bring growth, patience and security. Eventually, managing all of these burdens will become second nature, if not easy. I know I will find a place of peace. While I wait, however, I find myself looking wistfully backward.
I miss my bubble, but it’s not where I belong. One day, my heart will catch up with my mind. Until then, universe, grant me patience.

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One thought on “I Miss My Bubble

  1. I hear you on this one 100%. For me, I lived alone independently for 8 years, ran my own business, life, etc. Created my own little bubble. Then 2 yrs ago I got married. And the comments drive me out of my mind. ‘your husband must help you so much!’ ‘what a relief because you couldn’t live alone like this.’ etc Yes my husband happens to be able bodied and has full vision. So what?! I actually fired a dr I’d had for years after multiple comments by this person about ‘but your husband is sighted, right? you didn’t marry someone also disabled, right?’ When I was not in a relationship I found I rarely got such comments about my abilities to live and care for myself independently. My husband doesn’t see himself as my caregiver anymore than I see myself as his!

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