For me, the most exhausting part of living a disabled life is feeling the calling (or the burden) to educate those around me, and watching my attempts fail to take hold. I’ve been walking this planet for almost a quarter century now, and people I’ve known for most of that time still regularly send me undescribed images and grab me by the wrist when they should be offering an elbow. I make the same mistakes with my own friends and family, asking silly questions and continually messing up when I ought to know better. Time and time again, the universe keeps teaching me that regardless of how many marginalized groups you interact with, there’s no guarantee the lessons you learn will stick with you.
Then, there are the equally frustrating encounters with strangers—for instance, the man who, undeterred by my puffy parka and suit jacket, gripped my arm hard enough to inflict actual pain because he did not trust me to open a door on my own. Even after a swift and firm rebuke on my part—which never gets easier to do, by the way—he followed me around the elevator lobby, either unaware or uncaring that his assistance was not welcome. I can go through this routine a thousand times, and even when people are receptive and apologetic, the stress adds to the daily grind in ways that catch up to me, no matter how hard I try to be philosophical about it.
One down, many thousands to go. How uplifting!
Much is made of the big, sweeping changes, like inclusive hiring policies and game-changing legislation. Too little is made of quiet moments of reflection, advocacy, and individual triumph. It’s easy to get the community fired up about the stranger who grabbed you in the elevator lobby, but a lot harder to get them to rejoice with you when one more person finally “gets it.” Every day, one more taxi driver understands why service dogs should be allowed in his cab. One more teacher accepts that her fear of teaching disabled students is a doorway, not a dead end. One more parent respects a disabled child’s boundaries, as painful as it is to pull back and let go. These small but mighty turning points, the “I never thought of it that way” and “that makes sense now” and “I’m sorry” are happening everywhere, all the time. They don’t change the broken system that is so terribly skewed, but they matter, just the same. From what I’ve observed, so few people are talking about them.
Seriously, why are we not doing more to congratulate each other for the ripples we are making? Why are we not doing more to tell others about those ripples in the first place? Maybe they’ll turn into waves, and maybe they won’t, but when’s the last time you stopped to truly appreciate the wins, tiny as they are? I know it’s been too long since I’ve stopped being sad about the times I couldn’t reach a person long enough to think about the times I managed to get through to them. Only now am I beginning to realize this is not the healthiest approach.
It’s discouraging to know that most people will repeat the mistakes we correct. Not everyone, not even most people, will remember your explanations and teachable moments. You have probably forgotten a lot of what you’ve been told over the years about how to treat people the way they’d like to be treated. I’m sure I have. We do our best, but we all slip up, no matter how informed and responsive we become. And, since no one owes us a thing and no one is obligated to educate us on the fly, we may make errors without even knowing it. I have not called out every single person in my life. Not even close. Who has the time?
Here’s the thing, though: we need to let the small wins define our lives as much as the losses. The stranger who asked if I needed help, and respected my wishes when I said no, should be just as significant to me as the person who couldn’t take no for an answer. If I’m willing to berate myself for failing to educate successfully in one instance, why am I not willing to be proud of myself when I do make a difference? Harm always seems more impactful than a neutral or positive experience, but I’m discovering that when we give the wins a little more space and sunlight, they have infinite power. Successful advocacy attempts from years ago are still able to give me solace and strength, just as unsuccessful attempts can still inspire feelings of anger and futility. Why, then, do I so often choose to dwell on anger, when I have so much else to celebrate? And why do I let other people decide whether my advocacy is meaningful?
I don’t have the energy for the level of advocacy I’d need to make the big wins happen—not usually, anyway. I have a busy life to live, and only so many spoons. I don’t have a string of Facebook-worthy successes with which to regale you, and the advocacy I do have time and energy to pursue would seem trivial to a lot of the people I know.
But last Christmas, I held my new nephew for the very first time, totally free of the anxious hovering and concerned muttering I’ve come to expect when I hold someone’s child. The narrative was less “awkward blind girl holding vulnerable baby,” and more “Auntie Meagan falling in love with her gorgeous nephew.”
Last week, my coworker asked if I needed help, then calmly walked away when I said I was doing fine, thanks.
Yesterday, I really did need help, and the person who gave it did not connect that moment of dependence with my competence as a professional. She has probably already forgotten she helped me at all.
Tomorrow, someone will ask me for help, and I’ll think no less of them.
With every day I keep trying to build bridges and promote crucial understanding, with every day I refuse to be permanently discouraged, someone trusts me a little more. Someone learns to better respect my boundaries. Someone promises they will never again grab my arm or lead me by my cane tip or badger me about not wanting a dog. More and more now, I am able to forget, for days at a time, that I was ever on the margins at all.
That’s not nothing.
That is, in fact, everything.
I’m always here for your small wins, just as I am for the times things go wrong. Get in touch, because as the ancient proverb goes, a shared joy is doubled, but a shared sorrow is halved.