gratitude

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.

A close-up of Minette, a calico cat.

A Cat to Scorn Me (and Show Me How to Love)

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I’ve heard it said that to achieve perfect balance in life, everyone should have a dog to worship them and a cat to scorn them. I’m proud to say that, having grown up in a household that was almost always populated by both, I must be an exceptionally balanced soul.

Over the years, three dogs have taken up residence in my childhood home, not to mention my heart, and we’ve had the same beloved cat, Minette—moderately scornful, often dog-like in her affection—for 17 years.

She is in many of our home videos. She has slept almost as many nights in my parents’ home as I have. She knows every secret nook, every cozy sock basket and every strategic perch. She made me into a cat person, all by herself.

I’ve cried into her fur after many difficult days, and stuck bows on her indifferent little head on many Christmas mornings. My parents joke that, functionally, she helped raise their kids. Few things in this world bring me more joy than the knowledge that this cat exists.

You know where this is going…

Tomorrow, Minette will be making a trip to the vet, and she will not be coming home from it.

And so, I will turn to writing, as I’ve always done when grief comes knocking, or barging rudely, as it’s wont to do. I will tell the story of a cat who remains, despite the multitude of wonderful dogs in my life, my very best animal friend—a friend who helped me grow, gave me confidence, and taught me that Albert Ellis was right when he claimed love is “largely the art of persistence.”

“You are not Special.”

From the moment she came into our lives as a delicate-looking kitten with a croaky mew, Minette made it abundantly clear she saw no reason to treat me any differently than the other members of the household. (You can try arguing she simply wasn’t bright enough to realize I couldn’t see, but given the amount of things she tried to get away with while I was the only one around, I’d beg to differ.)

No, she would not be moving out of my way, no matter how many times I bumped into her. Nuh uh, she was not going to signal when I was about to accidentally sit on her; I’d just have to learn to be more careful. No, she was not going to spare me from duties like letting her out, letting her in, fetching her water, and providing mandatory snuggles.

And, yes, I was just as capable, as loved, as wanted as anyone else.

This doesn’t sound like much, but as a disabled eight-year-old, I was accustomed to being treated differently by just about everyone in my life. Grownups had different rules, expectations, goals, fears. I struggled to be helpful. I felt out of place. I was uncomfortably aware, as were those around me, that I was the odd one out, despite my family’s best efforts.
But around Minette, I was just another member of her loyal human staff, perfectly able to do her bidding, and perfectly worthy of her unreserved affection. In scorning me–in expecting me to adapt to circumstances not tailored to my every need–she taught me that life is full of surprises that will wind around your ankles and trip you, no matter how unprepared you may be.

Humans would work around me. Dogs would get out of my way.

Minette, not so much.

Balance, right?

“Human, I Summon Thee”

Minette isn’t the least bit imperious. H. P. Lovecraft, who liked his cats “lithe and cynical,” would not have approved. The choicest spot was always as close as she could get to the nearest available lap, and her favourite activity was waking me in the mornings with a torrent of kisses. (Her tongue may have had astonishing exfoliation powers, but I would personally have preferred the alarm clock.)

Since she split her time between indoor and outdoor pursuits, she was often in need of something or other.

“Human, I have kicked my toy under the stove. Help!”

“Human, I need to take up 90% of your queen-sized bed, not this paltry 75%. Move over.”

“Human, I am hungry. I am thirsty. I need to go out. I need to come in. I need a cuddle. I need you!”

For the first time, a fellow living creature  was in sincere need of me, and I was able to fulfill that need. It was one thing to do chores, but it was another to hold, feed, and care for an animal that depended on me as much as anyone else in the family. Somehow, caring for a dog wasn’t quite as validating. The implicit, unwavering trust that cat put in me, a trust I hadn’t yet found elsewhere, not even in my dog, was transformative.

Adults were forever telling me to ‘be careful,’ ‘slow down,’ ‘let me do that for you.’ Dogs were always pushing me out of the way—of traffic, of water, of anything that looked remotely dangerous.

Minette, on the other hand, saw no reason why I should not attend her as faithfully as any other. She barely blinked as I handled her newborn kittens, and was never shy about insisting I find her a treat. Speaking as a blind person who still fights to be useful, nothing builds confidence like a little bit of trust.

“I’ll Be Back”

I don’t know of any cat who loved bigger, harder, more persistently than Minette. You couldn’t get rid of her. I have many memories—God, but they hurt to think about now—of pushing her off my lap as she walked all over my book, or my keyboard, or my plate, or my fancy new outfit. (In our house, you weren’t ready to go out until you’d been sufficiently furred up.)

She had to be on you, not beside you. She had to lie on your pillow or in your arms, not down by your feet. She needed all the snuggles, all the time. And she had a special, highly effective meow pattern in place to make sure she could always get through my bedroom door:

  • Meow #1: inquisitive and chirpy. “Meagan? Are you awake?”
  • Meow #2: cheerful and warm. “I knew you were up! Let me in, will ya? I haven’t walked all over your head yet today.”
  • Meow #3: confused and injured. “You mean … you’re actually pretending to be asleep right now? Seriously? I can hear you turning pages. I know you’re awake. Not cool, Meagan!”
  • Meow #4: resigned and piteous. “Okay, you win. I am now desolate and despondent, but that’s just fine … I’ll remember that. And by the way, the guilt’s going to kick in any moment now.”

The beautiful thing about having Minette in my life was that I got to observe unconditional, extravagant love on a daily basis. I could push her off my lap five times, but she’d come back six. I could trip over her, accidentally shut her in an empty room, even forget about her. But I could not ever lose her joy at seeing me—her delight in the time I spent with her. No matter what kind of day I’d had, no matter what mistakes I’d made or burdens I carried, there was always that engine-like purr. If I had a migraine, a broken heart, truly torturous chemistry homework, she was there. For her, my need for comfort was always valid.

I hope I can learn to love like that—with a few more boundaries and a little less keyboard-trampling, of course.

Run free and chase the sunbeams, Meeners. Thank you for everything you gave us.

Meagan, wearing a colourful summer dress and tall black boots, smiles as she touches soft, fuzzy leaves. Purple petunias are visible in the background.

Meagan’s Guide to Stylish Farewells: On Coming to Terms With Vision Loss

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Sighted people are always caught off guard by how casually I treat my vision loss, whose inexorable progression began the day I came into the world. While I understand the assumption that vision loss is all sadness, all the time, that isn’t the case for me. If my vision was ever good enough to accomplish useful tasks like driving, or fun things like painting, I’d likely be far more bereft. As it is, what little vision I was born with is more liability than blessing, becoming increasingly burdensome as it dwindles.
The one thing I occasionally allow myself to mourn is the loss of colour perception. Though my understanding of colour was never perfect, my childhood is filled with memories of gazing with fascination at anything brightly coloured, especially in nature. Now that I’m all grown up, and my vision loss is more advanced, I don’t reliably notice colour unless I make a deliberate effort. Even then it’s hit or miss.
I’ve always known I’d eventually lose all my colour perception, but over the past few months, I’d begun to view that loss as part of my present, not my future. It was no longer on the horizon. It was upon me, happening in real-time, and I couldn’t deny that it seemed to be slipping away more quickly every day.
The way I saw it, I had two options: I could lament its vanishing and write more soppy posts about it, or I could give it a send-off worth remembering. I chose the second option.
I wanted to infuse this time in my vision loss journey with joy and gratitude, focusing on what I had rather than what I’ll lose. To that end, I enlisted the help of my charming and devastatingly attractive friend Krissi (did she pay me to say that? You decide.)
She fell in love with my vision (ha ha) and planned the most colourful day she could imagine: a plant crawl. All day long, we visited various greenhouses, including the Muttart Conservatory and Greenland Garden Centre, exploring plants from around the world. There was more colour than I had the capacity to process, and it truly was a feast for my eyes and soul.
Surrounded by vibrant flowers and exotic trees, I got all the colour-gazing I could ever want. I also discovered something else. Interacting with plants is a surprisingly tactile experience, if you have a brave and patient plant expert like Krissi nearby to keep you from impaling yourself on a cactus. I’d always thought of plants as delicate things that didn’t like to be touched, and there was the looming threat of insects that would make their displeasure painfully known. In these climate-controlled environments, I was able to gently acquaint myself with the glossiness of banana leaves and the shapely curvature of a fruit tree. I stroked roughly textured bark and soft foliage that rivalled felt. I found a leaf that looked exactly like a feather, with its slightly downy grain. I touched leaves so fuzzy they felt like peaches, and other leaves that felt like nothing so much as the rough but cozy blanket my grandfather might drape over the back of his rocking chair. I discovered creepy-feeling succulents and graceful, delicate herbs. Krissi nearly had to tear me away from a plant that appeared to have sprouted its very own umbrellas. There was so much to touch that I occasionally forgot I was primarily there to look.
The biggest surprise came when we stopped off at Krissi’s house so she could teach me the tricky art of flower arrangement—another chiefly tactile activity. I assumed it was all about doing whatever looks prettiest, but I soon realized that what felt symmetrical was the most reliable test for what would look fabulous in a vase. To my surprise, I learned that rookies use their eyes, while pros use their hands. Krissi patiently showed me how to trim stems, strip leaves, and thread flowers through my fingers in an awkward X shape.
Thread, twist. Thread, twist. Thread, twist. Snip snip snip…
Boom! I suddenly had a gorgeous bouquet, which made it look like I really knew what I was doing. (I still don’t, but photographic evidence of my triumph will forever suggest otherwise. Tell no one.)
As I cleared away the pile of stems I’d cut and sat back to admire an arrangement so bright I could actually see it, I experienced the air of celebration I’d hoped to inspire. I knew I’d soon see the world in shades of grey, and that not long after that I’d see nothing at all. But in that moment, I sat back and absorbed the incredible gift I’d been given, which was no less wonderful for its impermanence.
I’m sure that sadder times are ahead of me, with a blind community that is so often dismissive of partially sighted pain. I do not expect to remain this philosophical and high-minded about it all. I will have days where I’m grumpy about this slow march to darkness, even though I am already blind, for most intents and purposes.
But I’ll always have the comforting knowledge that I can live well and happily, colour or no colour, light or no light. And I’m lucky to have enjoyed both, if only for a while.

I Don’t Want You to be Grateful

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I don’t want you to be grateful that you don’t have my life. I want you to ask yourself why it’s so hard, why it’s so unfair, and what you can do about it. I want you to see the barriers—the inaccessible environments and the crushing weight of low expectations—and realize that, without these roadblocks, it wouldn’t be quite so hard and unfair. I want you to know that I wasn’t put on this earth to encourage you to appreciate what you have. I want you to understand that, in a more inclusive world, there would be little need to look at a disabled person and think, “Thank God that’s not me.” I want you to know that through the smallest acts, you can help make that happen.

I don’t want to inspire you. I want my ordinary actions to be just that: ordinary. I want to be more than a motivational meme or symbol of struggle. I want you to see me, not just the white cane, the dog, the wheelchair, the diagnosis, the brain or the body that doesn’t work exactly like yours does. I want you to admire my strong points without erasing my weak ones. I want you to stop attaching “for a disabled person” to every compliment you pay me. I want you to see my talents and charms, my flaws and my quirks—the things that make me every bit as human as you.

I don’t want you to tell me you’re my ally. I want you to show me. I want you to model that care with your actions, your values and your votes. I want you to describe your photos and call out that friend who’s always complaining about the “handicaps” on welfare. I want you to ask why that new restaurant doesn’t have an accessible entrance. I want you to recognize that a thousand social media posts can never equal an in-the-moment act of kindness. I want you to accept that how you make me feel is far more impactful than what you tweet.

I don’t want to be in your diversity poster, your diversity working group, your diversity brochure. I want to be consulted for practical solutions, not publicity stunts—because my time is worth more than that, and so is yours. I want you to seek my feedback not because the optics are favourable, but because my perspective is of value and I have something to offer you. I want two-way streets. I want to help move things forward, but I can’t do that while I’m sitting at the token table.

I don’t want to make you a better person. I want to increase your awareness and deepen your understanding. I want to point you toward opportunities for growth and education. I want you to be part of the solution. I want you to stand beside me as my equal and my ally, not because it makes you a good person but because better treatment of disabled people makes good sense for everyone.

I don’t want your charity. I want you to hire me. I want you to rent to me. I want you to let me take your class. I want you to be the patient or the client or the customer who doesn’t flinch when a disabled person walks into the room. I want you to trust that I am suitably qualified and that I will meet your standards. I want you to be comfortable with the concept of working, productive disabled people. I want you to wonder why there aren’t more of us.

I don’t want you to be my voice. I want you to acknowledge that I have my own voice. I want you to amplify it, bring it to the ears of those who wouldn’t otherwise listen. I want you to help the world understand that I am not, and have never been, voiceless. I want you to refuse when you are asked to represent me. I want you to point in my direction when someone asks, “What does she think? What does she need?” I want you to step back, because I am my own best advocate. And when the world asks you to speak for me, I want you to pass the mic, because my story is mine to tell.

Wait!

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“What’s it like, being disabled? As in, day to day?”

For a long time, this question stymied me. I had no frame of reference, no way to start with “normal” and paint a picture of what “abnormal” might look like. I could describe specific obstacles, particular incidents, but I had no sweeping, instantly relatable analogy–no lens to capture what this life is like when it’s the only reality I’ve ever known.

Many have taken a crack at this tough little nut, and come up with innovative ideas along the way. Being disabled, some say, is like playing a video game on the highest difficulty setting. Others say it’s like navigating an obstacle course while everyone else uses a sidewalk. Some of us resort to hiking metaphors. Your path is wide and smooth; mine is a rocky, treacherous trailblaze of a life, which manages to be as hard as people assume, and at the same time, much easier.

It was not until I stood on a slushy street corner, waiting for an unusually long light to change, that it hit me. I had found my personal metaphor, and it was one that covered an astonishing amount of ground in the simplest way.

Being disabled, I realized, is a lot of standing on the corner, waiting for the world to decide that it’s safe for you to cross. My life as a disabled person involves a lot of standing still, watching cars fly freely by, wondering when the light will turn green long enough for me to make some headway. Since the system is more complicated than I can wrap my head around, and there’s no handy countdown, I have no clear idea when that might happen. So I wait, getting increasingly cold and impatient, for a path forward. Some days, it feels as though the world is filled with cars, and I am the only pedestrian in sight. They are roaring along while I walk and wait, walk and wait.

I wait for accommodations to be put in place. I wait for my paratransit ride to show up. I wait for technology that promises to save me. I wait for people to decide I’ve proven myself worthy. I wait for attitudes to change, for fears to be calmed, for unreasonable limits to be stretched. I wait for accessible products in a world where nothing is designed for me—nothing I can afford, anyway. I wait, sometimes quietly, more often restlessly, for the world to make room for me.

Then, when the waiting becomes too much for me, I try to jaywalk. I barge right into the unsafe spaces, the heavy traffic, the uncharted territory. I might get a warning or a slap on the wrist or even an angry honk from someone’s horn; occasionally, I retreat to my corner, chastened. I am foolish and fragile. I must be protected from myself, and from shadowy figures who would exploit me. I must be patient. I must be understanding. I must realize that change doesn’t happen overnight. I must not ask how long this light will stay resolutely red. I must not point out that everyone else seems to be cruising while I am plodding.

All in good time. Soon enough. Someday, if you go the extra mile.

Walk and wait.

Every now and again, that light turns green and I make real progress. Barriers are overcome, and my journey picks up speed. Life comes so easily that I have time to forget, if only for a few moments, that I was ever a lowly pedestrian in a dangerous network of drivers. The reprieve might even be long enough for me to point at other unlucky foot travelers, and to wonder loudly what they’ve done–or left undone—to leave themselves stranded at the corner.

Inevitably, that light turns red again, and I remember what it is to stand still, thwarted by incompatible software or a narrow-minded employer or a skills gap. There’s always something, and that something brings me back to the corner, where others can gawk at my inactivity and imagine how I brought it on myself. And it’s back to the waiting game.

With too much prodding, the metaphor falls apart, as so many of them do. Living as a disabled person is typically far less passive and futile than this framework would suggest. There is worthwhile work I can do while I stand on that corner. I am not a helpless victim of a static system, and I can certainly jaywalk if I wish, with the result likely to be rather tamer than death. Disapproval and societal exclusion aren’t quite as dramatic as an altercation with a speeding car, and I’m seeing genuine, lasting steps forward all around me. I am more welcome, more respected than I have ever been, and it’s not all down to my own advocacy.

Nevertheless, I use this comparison because it explains why the hurry-up-and-wait nature of living with a disability is so interminably frustrating. While my every success feels hard-won and snail-pace slow, my nondisabled peers seem to sail through most challenges, hitting so many green lights they don’t even notice I’ve fallen behind. For them, a red light is an inconvenience, not a brick wall, and no one is telling them to take those red lights gracefully. Meanwhile, I’m reminded to be grateful I’m allowed to cross at all. Commonly enough, the criticism comes from fellow disabled people, who are quick to condemn and still quicker to remind me that it could be worse.

I work toward a world in which I’m not always suspended in mid-stride, waiting for something to change or improve or move out of my way. I hope the next generations will know less and less of what it is to fall behind not because they are moving too slowly, but because the rest of the world hasn’t caught up. As I anticipate the birth of my first niece/nephew, I wish with all my heart that should they face barriers similar to mine, they will not need to be so patient and gracious and grateful. And I hope that, when the time comes to jaywalk, to break the rules and challenge the status quo, they will have the courage to do it, and the good fortune to emerge triumphant.

If you ask me, that future is definitely worth waiting for–but sooner rather than later, please.

In Praise of Those Who Share Their Wheels

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Where I grew up, a five-minute drive (an hour’s walk) would take me to school, a post office, the nearest convenience store. Forty-five minutes in a car would get me to music lessons, assuming the weather cooperated. Two hours got me to the nearest city, where decent shopping could be found. Four hours got me all the way to Edmonton, for music competitions and specialized medical care. To get anywhere of consequence, I needed more than my two legs, and my legs were all I had.

Part and parcel of being a kid in a rural area was asking for rides—to the store, to extracurricular activities, to friends’ houses, to school, even, if you managed to miss the bus. We were all used to it, and all our parents were used to the asking. Many childhood memories involve being driven everywhere, through rain and snow and parental exhaustion. It was annoying to be so dependent, but we were all similarly needy, so it never chafed too badly.

Then, all around me, my friends and relatives began turning sixteen and getting their licences. Driving fever hit, and suddenly everyone was blasting forbidden music at top volume, speeding around in second-hand vehicles, thrilled with their new freedom. For the first time, getting where they needed to go was a matter of grabbing their keys and promising they’d be home by eleven.

Everyone but me, that is.

At sixteen, seventeen, eighteen, I was still hitching rides, especially when out of reach of a cab or bus. Visiting my family during the holidays meant convincing some kind soul to ferry me home. Getting to the hospital when I was too weak to rely on a cab driver meant calling everyone I could at inconvenient hours, asking the dreaded question through tears. Socializing with friends who lived on the outskirts of the city meant expecting them to drive half an hour out of their way, much of it through downtown traffic, for the dubious privilege of seeing me. My life, as a twenty-three-year-old urban dweller, is still influenced by my inability to drive. Asking for someone else’s wheels never gets easier, though it is routine and inevitable.

I could go on at some length about the ways being unable to drive makes life harder, more precarious, more difficult to plan, less convenient, less independent. Today, I’d rather focus on the people who answer yes, over and over. I want to honour the relatives, friends, and acquaintances who have driven in all weathers, at all hours, for all reasons. I want to highlight the kind stranger who, discovering me lost and bedraggled during a storm, drove me to my house without any thought of recompense. They have performed this service whether they felt like doing so or not. They have done so without expecting a return on their investment of time and gas money. They have done it, if not always without complaint, then with generosity. The music lessons and emergency medical appointments and shopping trips and singing engagements and social visits have all meant the world to me, and I owe that joy to the people who transported me there.

When someone asks for a ride because they have exhausted all other options, you know they desperately need it. You know it will improve their lives in ways large and small. You know that it is not usually easy for them to ask.

If you’ve been a frequent driver for others, know that you are valued, and needed, and appreciated. We may not always tell you so, but it’s no less true.

It’s easier than ever to travel without a vehicle, but there will probably always be a need for a kind soul with a car.

In Defence Of “Internet” Friendship

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“So, where did you meet your friend?”

“We used to post to the same forum, and–”

“Oh…so not, like, a friend friend.”

“A friend friend?”

“You know, like a…real friend. Someone you actually know.”

Friendships forged through online interaction have gained considerable legitimacy since I was a wide-eyed teenager first experiencing the internet, but it’s dismaying how often online connections are still casually dismissed by people of all ages. Apparently, there was a top-secret, authoritative friendship conference that resulted in an unofficial friendship hierarchy, which influences the way friendship is viewed by everyone ranging from seniors to high schoolers.

According to this mystical hierarchy, you can’t measure a friendship in love, but in geography. If you only see your childhood friend once a year for a quick coffee and cursory catchup, that still ranks higher than an “internet” friend whom you haven’t met in person but with whom you communicate daily. Friends who live across the street usually carry more weight with people than a friend who lives across the world, regardless of intimacy, frequency of communication, and overall satisfaction derived from the friendship. (This also applies to romantic relationships, as I learned to my immense chagrin while dating men I’d met online.)

Besides the fact that I find this arbitrary standard inflexible and anachronistic, I also feel it comes down heavily on disabled people, who seem to have an especially large number of online friends. Anyone experiencing loneliness, isolation, and/or a lack of conventional social opportunities can benefit from online social networks. Reducing internet interactions to something pale and second-rate targets a population that is already marginalized. While many disabled people can and do seek social opportunities within their geographical sphere, the internet is an enticingly level playing field where the experience is smoother and the supportive communities are numerous.

My isolated childhood remains a living advertisement for the value of online friends. I was an introspective soul who struggled to make friends in traditionally-accepted ways, so internet social circles were far easier for me to embrace. Online, I didn’t have to be the awkward, introverted blind girl. I could talk to people who were older and wiser than me, share resources with fellow blind peers, and enjoy a sense of social freedom that wasn’t present in my small-town ecosystem. I treasured the offline friends I did make, but rural life didn’t offer the diversity and sense of belonging I found online.

Now, as my life becomes busier and my chronic pain limits my social activities, I appreciate my supportive online network of disabled and non disabled friends more than ever. The love, encouragement, assistance, and companionship they offer are as real and meaningful as anything provided by my equally-adored offline friends. As my heart breaks with the death of an online friend’s husband, and soars with joy at another online friend’s success at work, I do not doubt the gravity and significance of friendships conducted and sustained via the internet.

My internet friends are indeed “real” friends. When they are troubled or grieving or frightened, I comfort them. When I need a friendly ear in the middle of the night, there is always someone to call. My online friends send the best care packages, letters, and virtual (but no less heartfelt) affection. We pay astronomical amounts to visit each other, and make memories we cherish for years. We assist each other financially, emotionally, and spiritually. My online friends may not be able to drive me to an appointment or hold my hand when I’m ill, but they can provide love, advice, compassion, empathy, and laughter.

Never let anyone disparage your online friendships. The internet is a fickle medium, and you may certainly find dangerous, duplicitous people there–people whom you will befriend and later delete from every social network, wondering why you were ever naive enough to trust them. More often than not, you’ll find people who are excellent friendship material–people who will fuse your happiness with theirs and do everything in their power to enrich your life. Whatever people say, however much they scoff, appreciate and cherish the friends you make online, and always measure your relationships in love and respect, not geography and popularity.

It’s The Little Things

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So often, it’s the little things that spark my frustration. True, the broad, sweeping issues matter more in the grand scheme, but the minor, day-to-day irritations eat at me the most. Instructions I can’t read, inaccessible features of a website, people asking rude questions–these annoyances burrow beneath my skin and make me curse my disability (or, more accurately, the way the world treats that disability).
There’s another side to this, however. Just as I’m most ruffled by the tiniest details, so too am I cheered by equally inconsequential things. A door opened at just the right time, a person taking the time to describe an image, information provided in an alternate format—these are the gestures and accommodations that remind me the world is not falling apart. No matter how hopeless I feel, how acute my frustration, how black my outlook, there will always be some mundane occurrence or other to soothe my spirit, at least for a while.
My fundamental mistake, I think, is failing to acknowledge these happenings and give myself the space to be grateful. It’s easy to express gratitude for the landmark victories and grand gestures, but I’m less likely to stop what I’m doing and spend a moment simply appreciating the good that’s quietly and often anonymously done in the world each day.
My regular readers know just how averse I am to trumpeting positive mantras and ignoring uncomfortable truths. Disability advocacy is still sorely needed. The world has a long, long way to go before the personhood and humanity of people with disabilities is fully recognized and integrated into society’s structure. So many great leaps have yet to be taken, and there are a thousand battles left to fight. I’m aware of this, and so are fellow disabled people.
Yet, for my own well-being, I’m compelled to devote more energy to revelling in the simple kindness and thoughtfulness of others. Thanking a developer for prioritizing accessibility is, for now at least, just as important as calling another out for failing to do so. Writing social media posts about kindness, generosity, and hope should be as habitual as writing about injustice and prejudice. Venting my frustration is necessary, but expressing gratitude is necessary, too.
Even as we tell others how they have done wrong, we ought to tell them how they have done right. They may not listen or even care, but if we don’t give people the tools to improve, they never will. If we censure fellow disabled people, we must also build them up, for we all walk the same path.
I won’t close my eyes and make believe that the good outweighs the bad. I won’t ask anyone else to do that, either. Keep calling out what’s wrong in the world; your voice is vital, and if we do not speak, no one else will do so for us. In your own life, though, among those you come into direct contact with, focus on the good, as well. If a stranger does something you like, tell them so. If a disabled peer does something of which you approve, let them know.
Yes, we need to be watchful. We mustn’t become complacent and hide in a cocoon of warm, fuzzy feelings. That doesn’t mean we wouldn’t benefit from a few moments of happiness now and then, though.
So, take a moment. Think of the last time someone understood you, or supported you, or treated you the way you want to be treated. Reach back to that point—I hope it wasn’t too long ago—and remember how it made you feel.
Don’t forget.
It truly is the little things…

Hello Guilt, My Old Friend…

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After months of being unemployed (or underemployed, if you count sporadic freelance gigs), I finally got a full-time job. I have, for the first time in my life, gainful, permanent employment. I have achieved what I’ve been hoping for, and it feels indescribably satisfying. I feel grateful, even though I earned the job. I interviewed quite well. I conducted extensive research on the organization before coming in, and proposed plenty of ideas which the interviewers seemed to love. I dressed well, spoke confidently, and wrote a cover letter of which I can be just a little bit proud. I had the necessary qualifications, useful background knowledge, and a passionate interest in the organization’s work. In short, I did everything right. I was, I think, offered the job on merit, and the accommodations I’d need were treated as a matter of course, not a burden.
I probably shouldn’t feel grateful at all. Nondisabled people don’t generally feel lucky when they get a job. If they’re qualified, they probably feel, if not entitled, then at least deserving. There’s no question of whether they can actually do the work; it’s assumed that they can until there is evidence to the contrary. Gratitude has a place in my life—quite a significant one, really—but it’s not something I really want to be feeling right now. I’ve been lucky, yes; in the current economic climate, just about everyone struggles to find work. Still, I did the legwork and I think the organization will continue to see me as an asset.
There’s another emotion that is harder to ignore though, and I consider it far more toxic. I feel overwhelming guilt—guilt that I, who have only been searching for a handful of months, got a job so soon. I feel guilty that my supervisors have absolute faith in me, never seeming to regard my disability as anything other than a personal trait. I feel guilty that a bachelor’s degree and scant experience were enough to land me the job, when far more qualified veterans of their fields couldn’t find a job if they begged. Most of all, I feel guilty that my highly-experienced, educated, and talented disabled friends are still out of work, still searching frantically, still wondering how they will make mortgage payments.
Again, I know guilt is not something I need to feel. None of my disabled friends would dream of resenting me. They are far too happy for me to feel something so petty. They’re overjoyed that I’ve found employers who value and respect me, and they’ve all emphasized how proud I should feel. (I don’t deserve my friends, I really don’t.) If anyone, disabled or otherwise, felt envy or resentment, they’ve hidden it well. The only person feeling anything other than pride and happiness is me.
From what I’ve gathered, this is a very normal emotional place in which to be. Disabled people have often confessed guilt when good fortune befalls them, no matter how hard they worked to be successful. So much of life is governed by luck, which is why people like me can find work and other, far more worthy candidates cannot. Yes, I slaved for my degree, and yes, I have an impressive-looking portfolio, but I’m certainly not the ideal candidate for most jobs. Yet here I sit, employed and happy.
I know better, but some dark, vindictive part of me thinks, “How dare you? How dare you rejoice when your friends are struggling? How dare you tell them all about your job and how great it is when they’re attending interview after interview without success? Are you so callous that you can enjoy your good fortune when people you love aren’t so fortunate? Really, how dare you?”
I’m doing my best to ignore that malicious little voice. I know full well that my happiness in no way robs others of opportunities. I know that my success will not hamper anyone else’s, and that the most productive, sensible course of action is to throw myself into the work and support my unemployed friends as well as I can. I know all this, but knowing a thing and believing it are two very different things.
I hope that I, and others in my position, will learn to eliminate or at least ignore these feelings of guilt. They are a waste of energy, and can even lead to self-sabotage if they are strong enough. There is no need to feel guilty, and certainly no good can come of it.
If you’re out there, and if you’re listening to that nasty little voice inside your head, do your best to tune it out. You are allowed to be happy. You are allowed to feel blessed without devaluing your effort and talent. Seriously, you’re allowed. Be there for your peers, give them a shoulder to cry on, and help them in whichever ways you can. That, friends, is all you need do.

Life Ain’t Easy (For a Disabled Person’s Sibling)

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If you’ve been fortunate enough to grow up with siblings, you know how much they matter. Whether we are plotting their imminent deaths or singing their praises, they’re always present in our lives and, if you’re lucky like me, poised to pick up the pieces when life shatters us.
People overlook the fact that, while having a disability makes for a tough life, being a disabled person’s sibling comes with its own challenges. Inspired by my own sister, I give you just a few of the many reasons we should all thank our siblings

They often take the back seat: Parents and families tend to lavish a lot of attention on us, whether we appreciate it or not. It’s usually because we need more assistance and support. My parents didn’t have to fight for my sighted sister’s right to an equal education. Still, siblings are so often shunted to the side, even when they could use a little support of their own. The admirable bit is that they rarely complain. It’s just the way it is, and they understand that.

They are irrevocably connected to us: Anyone who knew me back home immediately connected me with my disability, at least initially, and my sister couldn’t escape the association, either. Being the older sibling helped her establish her own identity outside of mine, but she was often asked whether she was “Meagan’s sister,” and quizzed about what it was like to have a blind person in the family. The situation is even worse for siblings of those with more severe disabilities, who rarely evade the harsh light of other people’s scrutiny. We mustn’t forget that they’re people, too, with individual roles beyond “sibling of disabled person.”

They become secondary parents: Blind people can sometimes avoid this, because we tend to be reasonably independent souls. Even so, siblings often take on part of our care, especially when are parents aren’t around. My sister drove me to countless engagements, helped me coordinate outfits, and ensured that I was getting along okay, just generally. She was asked to shoulder more responsibility than any sibling should, and she usually did so without complaint.

They are asked to work harder: while some families are more egalitarian than others, it often happened that my sister ended up with the bulk of the “difficult” chores. While I did the dishes, she went out and picked rocks, or mowed the lawn, or changed the oil on a vehicle. My family’s subtle aversion to tasking me with anything too hard prevented me from learning some concrete skills, and it also meant my sister often got the shaft where household responsibility was concerned. Mostly, she dealt with that dynamic gracefully, only occasionally giving into a (justified) rant or two.

They become fierce defenders: My sister is a nonconfrontational person, but mess with me and you’d better hope you’re not within glaring distance. As we strolled through the mall, being gawked at by strangers, my sister dispensed cheery waves and bright, toothy smiles with relentless determination. She’s shamed more than a few people into looking away guiltily, and she can’t bear to watch me being mistreated. I learned not to tell her about any bullying that went on in my life, lest it enrage her. I don’t need protecting, but it’s still comforting to know that someone will be angry on my behalf when I’ve been treated unfairly.

They grow up too fast: siblings of disabled people learn about sacrifice, hardship, injustice, and inequality very early on. My sister was presented with living proof that life is not often fair; that people sometimes get rare and incurable genetic diseases; and that the world is not kind to anyone with a disability. My sister also had to learn self-sacrifice early and often, sometimes missing out on something she wanted because I needed something else more. She had to settle for less time and attention. She even had to forego certain visual experiences because I’d be left out. These are things she’s forgiven me for, and they are things I still feel guilty about.

If this sounds like your sibling, send them a text, give them a call, or link them to this article. Seriously. Do it. Right now. I’ll wait.