negativity

Nutritious Negativity

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In a culture that prefers disabled people when we’re smiling, I’m what you might call a bad sport. Cheerfulness in the face of a challenge is all very well, and my natural disposition is upbeat, but toxic positivity is an enemy I’ve confidently opposed for most of my life. Good vibes won’t grab a broom for you when your half-full glass is in pieces on the floor.

I’m convinced toxic positivity makes it harder for marginalized people to be honest about their pain, even with each other. Don’t get me started on the unrealistic expectations we place on ourselves when we believe the only worthy disabled person is one who does what nondisabled people do, only better. Writer and cancer survivor Barbara Ehrenreich distilled this well, observing how ‘no negativity, just vibes’ encourages us to “deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.”

Pay attention and you’ll see how much the world rewards a cheerful, reality-denying, optimistic disabled person. It celebrates them when they manage what is presumed impossible. It is satisfied when they gently, bravely accept a life that is less-than. It rewards them a whole lot less when they point out problems, admit how much their circumstances suck, or ask nondisabled people to adapt.

More and more, however, I am troubled by what happens when despair takes the place of plucky heroism. As a somewhat cynical person, I find it tempting to dwell on the ways I’ve been mistreated, overlooked, misunderstood and under-resourced. Yet, most of my proudest and bravest moments happened because I stopped dwelling, focused on what was in my control, and got shit done. If I fixated on what I wasn’t taught as a kid, I’d never have learned anything new as an adult. If I focused on what wasn’t done for me, wasn’t available to me, was denied me, I’d never have been able to build a life worth living. I am where I am in part because I knew when to wrench myself out of the disappointing past and dream of a future worth fighting for.

I’ve seen too much unnecessary and unjust suffering to believe the disability prosperity gospel, a bootstraps doctrine that refuses to hold systems to account. But I’d be lying if I didn’t admit our attitudes can sometimes determine what is possible for us in a flawed world. Determination can fill a lot of gaps left by inadequate education, poor skills training, and unenforceable accessibility legislation. I’ve scaled quite a few walls by working hard and refusing to go away. I couldn’t have done any of that if I didn’t believe on some level that the effort was worth the hardship.

I submit that nutritious negativity can hold us as we tread the murky water between frozen smiles and slumped shoulders. Nutritious negativity is a no-nonsense motherly type who sees through our pretenses and has no patience for them. She makes room for complaint. She welcomes sincere lament. She is not afraid of the anger that has fuelled justice-seekers since the beginning. She teaches us to listen, tell the truth as best we can, and practice presence as we engage with the suffering of others. Nutritious negativity doesn’t ask us to deny what is true, nor does she tolerate empty despair. While she may ask you to stop dwelling, she will grieve alongside you and never demand a smile.

I don’t want to live in a world where my genetic disorder is somehow my fault, where my chronic pain is attributed to a negative attitude, where my mental health would magically improve if I pretended harder. But I do want to live in a world where imagination and resilience will come to my rescue when imperfect systems let me down, because they always will.

We need to complain. We need to point to our half-full glasses, in pieces on the floor, and say, “This is not okay!” Only when we make space for “This is not okay,” can we progress to “This is how we make it more okay.” Dismissing those brave enough to admit more work is needed won’t change reality for disabled people; it only makes reality rosier for nondisabled people who can afford to ignore it. As is often said, privilege is being able to stay neutral because your life isn’t affected either way.

At the same time, we need wild hope and irrational optimism, because sometimes that’s all we’ve got. Plugging away at the impossible is not especially awe-inspiring, day to day, but I have seen its power, over and over again.

Some disabled people are singing songs of triumph, glowing with pride at how far we’ve come. Others are singing protest songs, overwhelmed by all the work that is left to do. Many are humming quietly, content enough but wondering, a little guiltily perhaps, if this is all there is. Let’s learn to listen to every voice in this splendidly diverse chorus. We need them all.

Yes, I Have “Bad Blind Days”

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People complain about bad hair days. They complain about bad workdays. They complain about Monday’s very existence. I complain about all those, too. Frequently. One might even say, insufferably.

There is another day I feel less comfortable complaining about: the Bad Blink Day. Some days, everything that can go wrong does go wrong, in the context of blindness at least. This morning, for example, I was trying to prop my cane against a door. It fell no fewer than four times before I accepted defeat and folded it up. At that moment, I thought “I should have gotten a dog!” We all know how I feel about getting a service dog. I remember a day two summers ago, when I was learning the route to work and back, in an unfamiliar neighbourhood, with absolutely no one to go along with me. Everything went pear-shaped from start to finish…

The inauspicious beginning: I was sorting out some new outfits to wear to work, and found that I’d forgotten which skirt went with which shirt. I was panicking, because I apparently lack the ability to prioritize calamities. I eventually threw on something I thought might be okay, and off I went to catch the bus. The bus, of course, was late, and the driver very grumpy. I used my GPS the entire time, trying to make sure I didn’t miss any stops. (I’ve since learned to pester the driver, however annoyed they may become.) During the work day, things went reasonably well, but for a few accessibility hiccups I dealt with quickly. Well, okay, so I was on the phone with tech support for an hour, but otherwise it was great! And then …

I caught my first bus home, and transferred at a busy station. It was pouring, and we were under a tornado warning, I believe. I got onto the second bus, and when the driver reached the approximate location of my stop, she said “I’ll just drop you off over here.” The chosen spot left me disoriented, since I didn’t really know my way around yet. I wandered for ages through rain and wind. Normally rain doesn’t bother me much, but this rain was unusually cold, for July anyway, and it was really coming down. I was hopelessly lost, though I knew I was only a few blocks from my destination. The GPS was no help. My phone was nearly dead, and in any case my fingers were so wet and cold that I couldn’t get the screen to work (this was before I had Siri). I knew that, had I been sighted, this day would have gone a lot differently.

The dreary end: I ended up standing in some stranger’s yard, hiding under a tree, bawling my eyes out and getting soaked. The stranger was kind, and drove me home (yes, I got into a stranger’s car—sue me). I got in the door (wringing out my skirt as I did so), went upstairs to my room, and curled in a ball to cry. That day, like many days, I was so done with being blind.

Most of my “bad blind days” aren’t nearly as dramatic as all that. Usually it’s little things, like getting somewhat lost, calling cabs to go to an unfamiliar place, fighting stupid stereotypes, and generally getting people to treat me normally. We all have them. So why don’t I like talking about them?

I’m very free with blind friends. They’ve all gone through what I have, so we can share our frustrations without inviting negative perceptions, seeming whiny, or killing people’s buzz. Yet I have difficulty talking to sighted people about days like this. Maybe it’s because I feel ashamed: after all, blindness isn’t so bad. Many people have it far worse, so what am I grumbling about? Maybe it’s because I feel very slightly unsafe—as though anything I say will be twisted out of context. I don’t want one bad day to make people think my life is always confusing and frustrating. Maybe it’s because I’m a generally upbeat person, and I only feel safe venting to a select few.

I’ve recently decided to change this. I was chatting with my fiancé Gregg about social media. He was pointing out that people hardly ever post negative things there, and when they do, it’s usually to gain sympathy (we’ve all done it, don’t shake your head) or shed positive light in a subtle way. Oh, look how brave I am, fighting adversity! Oh, look how desperately busy I am; I can hardly keep up (but I actually can, see?).

What you don’t see, he said, is people posting genuinely negative things that have happened to them, without any intention of garnering sympathy or making themselves look good in crafty ways. “Maybe,” he continued, “posting more negative, less self-congratulatory things will help everyone feel better about the bad stuff that happens to them.” I decided he had a point. Research has shown that people often feel depressed as they scroll through Facebook, because all they see are the good times everyone else is having. All they see are the successes. All they see, in essence, is how well everyone else is doing, and how badly they are doing in comparison. It never occurs to people that what you see on Facebook is carefully chosen, and that it doesn’t represent the whole. I’ve met people who had glittery, perky, and plucky Facebook lives. I thought they must be the happiest people in the world, with a million friends and so many successes. These are some of the unhappiest people I know, by the way; all you have to do is ask them how they’re really doing. I’ve often heard the following: “I have a thousand Facebook friends and no one to talk to.”

So, on my Facebook, Twitter, and the blog, I’ll endeavor to share the foibles, failures, and trials without trying to be inspirational. I’m not trying to uplift others. I’m not trying to make everyone feel sorry for me. And I am definitely not trying to flatter myself in any way. What I want is to get people—disabled and otherwise—to feel comfortable talking about the bad stuff; the embarrassing stuff; the frustrating stuff. Share the things that aren’t inspirational, or uplifting, or flattering. Share the things that make you squirm just a little.

I’m not suggesting you roam into “too much information” territory, and I’m certainly not suggesting you post content that a possible employer might find unsavory. I’m not saying you should share stories about your latest drunken mishaps. Share the little stuff—the stuff we all go through but don’t like to talk about.

“But Meagan!” you say, “won’t that turn Facebook into a sea of negativity?” Nope, it really won’t. The less time we waste comparing our lives to someone else’s–without even seeing the whole picture–the more time we can spend supporting each other, keeping up with friends, and generally having a good time.

You can share the good things, too. Share your success in sports, music, art, and the workplace. Share things that make you proud. Complain bitterly about the impersonal—traffic, the government, the state of kids today. Just remember to share the personal stuff, too; if you can share the personal good, feel free to share the personal bad, too.