advice

Eat, Pray, Panic: Dubious Advice for Uncertain Times

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Most people alive today can’t remember a crisis like COVID-19. But as I fumble my way through this strange new way of life, I find myself leaning heavily on lessons I learned ten years ago, during my first brush with life-or-death crisis. Maybe it’ll be helpful for you, too.

I was home alone on summer vacation, lounging in my sloppiest house clothes, when two men, professional thieves judging by the efficient way they ransacked my home, showed up in broad daylight to ruin my day. They kicked in our patio door, tracked mud all over the carpets, and convinced my sheltered teenaged self that I was a minute or two from death or, perhaps, something worse. Like the tough, brave gal everyone knows me to be, I cowered on my bedroom floor and hyperventilated a bunch.

It was fine in the end, other than the afore-mentioned mud-tracking and the disappearance of some of our possessions. No one got hurt, and I would go on to spend many more lazy afternoons in that house, safe and sound.

In the moment, however, it felt every bit the traumatic event that it was. For years afterward, I’d have bouts of irrational panic so strong that I kept many a friend and partner on the phone with me for hours until I had the guts to fall asleep.

What stands out to me now, far more than the horror of that experience, was the way we handled it as a family. Everyone came over—grandparents, aunts and uncles, cousins, the whole herd—and there were tons of hugs. We cried. We complained about the mud. We had a pizza party, because of course we did, and chatted excitedly about the family reunions and music festivals we would be attending later that week. I sent upbeat messages to all my friends—“I’m lucky to be alive but it’s all good, lol”—and absorbed their love and relief. I pulled out the gallows humour, and everyone let me do what I needed to do to keep it together.

We acknowledged the crisis, we made space for our terror, and we carried on. In my entirely inexpert opinion, there’s a lot I, and perhaps some of you, can take from that into the present moment, as we continue to deal with a much larger, more devastating situation.

Desperate Times Call for Desperate Feelings

While it’s vital that we keep cool heads in the face of hysteria, we need to make room for all that fear and bad feeling. Sometimes you need to have that good cry, or that venting session, or that long, dark night of the soul to be okay again.

I’m a pragmatic person who shrinks from drama, but I’ve sent a few melodramatic texts and made a couple of tearful phone calls over the last few weeks. It was good and cleansing and 10/10 would recommend.

This is not a time for us to police our own or others’ grief at the loss of normalcy, sadness at cancelled events, or fear for the fate of sick loved ones. These feelings are new, and the coping mechanisms might also be new. I’ve found myself praying after years of vague agnosticism, and I’ve never found hymns more encouraging than I do right now, even though I have no idea to whom I’m singing. And boy does the gallows humour come in handy these days.

Cry your tears, pray your prayers to whoever, and keep on truckin’.

Life is not Cancelled

Lots and lots of things aren’t happening right now, or have moved to digital spaces that can’t provide the same experience and present accessibility challenges for many disabled people. I am writing this from a place of extraordinary privilege, as I still have a job at the moment, but I am feeling the restless dissatisfaction of being cooped up at home, lacking my routines and suffering declining mental health as a result. Nothing feels right, and we’re far from done with this distressing new normal.

That said, I find it empowering as all heck to hang on to as many things as I can in the face of a crisis. I keep my work schedule as regular as I can, even though I’m working from home and the internal pressure to work extra hours is mounting. I’m carving out time to enjoy my hobbies and keep up with life admin as much as possible, given COVID constraints. I’m taking shelter in the things that haven’t changed, and still writing blog posts, for better or worse.

Some days I don’t have the wherewithal to pretend all is business as usual. Most days, in fact. But I leave the door open to the idea that life can and does trundle along much as before. Disappearing into a comforting, everyday task, even for a few minutes, is more restorative than I ever imagined. Everything may be on fire, but the kitchen still needs cleaning.

Crises are Special Occasions

It’s easy to forget this, especially for those of us whose lines of work involve interactions with a terrified public, but it’s not selfish or unseemly to prioritize pleasure. I, along with many others, am intimately acquainted with the pain and anxiety of strangers, and it is my duty, professionally and personally, to offer aid where I can, and compassion where I can’t.

Nevertheless, crises are special occasions, so I’m using the high-end soap. I’m wearing the outfits that make me feel competent and in control (except when I’m wearing my bunny onesie, obvs). I’m indulging in bubble baths and moisturizing, like some kind of grownup. I’m doing all the hackneyed self-care rituals that aren’t productive but are, in their way, the glue that keeps me in one piece.

So knock yourself out. Play the frivolous video game. Read novels all day long. Order the greasy pizza, and stuff your face with abandon. Bake those cookies. Make a mess. Create fancy, over-the-top cocktails with whatever’s in your house. Drink the good coffee. Let yourself enjoy things, tiny as they may be.

Yes, we need to take this situation seriously. That seriousness is saving lives. But sackcloth, ashes and self-denial aren’t helpful, truly.

Be Nicer Than Necessary

Look, 99% of us are doing our best out here, okay?

You’re scared, but so is the person you just snapped at for standing too close to you. You’re stressed, but so is the cashier you just yelled at because the store is out of toilet paper again. You’re tired, but so is the nurse who hasn’t slept in heaven knows how long. You’re frustrated, but so is the disabled person who needs help with groceries, or transportation, or access issues. You really need a break, but so does the communications professional, the call centre operator, the public official, the politician, the teacher, the employer whom you feel isn’t doing enough.

Be kind, because the smallest of gestures will stick more firmly than the criticism, the anger, the pointing fingers and blame games. Goodwill is thin on the ground these days. Be part of the solution.

Settle in for the Long Haul

This is not going to be over in two weeks. Like most significant crises, the impact will linger long after the life-or-death scenario has run its course. It took me years to be totally comfortable in my parents’ house after that break-in a decade ago, and it will take us months and even years to work out all the ways this pandemic has touched and altered us. Some of us may not make it through at all, and that harsh reality will not soften any time soon.

So, get as comfortable as you can, and assume that this is a marathon, not a sprint. Try to incorporate healthier habits into your lifestyle, so that you can take at least one positive thing away from these terrible circumstances. Prepare to support those around you as we brace for the longer-term effects of depleted social safety nets, overburdened health care systems, and economic instability. Think about who might need you, and what you can do for them. While you’re doing that, don’t forget to consider how this is likely to affect you, and accept the fact that you’ll need to get really good at reaching out for help.

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We’re all in this together, as everyone knows. Acknowledge the gravity of this crisis. Make space for your terror. Eat some pizza. Carry on.

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The Empathy Gap: When “Been There, Done That” is not Enough

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As someone who has been told several times she is too empathetic to survive in this harsh world, I assumed I knew a lot about empathy. I never pretended to know how to kindle it in others, but I rarely had difficulty placing myself in even the most unusual positions to investigate all sides of an issue. While this tendency to favour the empathetic response is often involuntary and sometimes overwhelming, I always viewed it as a net positive. Surely, by being such an effortlessly empathetic soul—if not an effortlessly kind one—I must be adept at feeling and demonstrating compassion for others, especially when I’ve walked in similar shoes. Since I’m privileged to be trusted with so many personal stories of struggle, my well-ingrained empathetic response was one of the few traits about which I was fully confident.
Like so many of my long-held and cherished assumptions, I ran into compelling evidence that I was wrong. What is more, I should not have needed a formal study on the empathy gap to convince me; my own negative experiences with the disability community should have been sufficient. According to the authors of this study, the common belief that walking in someone else’s shoes ought to inspire compassion and even leniency is statistically inaccurate. This might not feel true at first, but the more I pondered it, the more sense it made.
Take this example from a few years ago, when I was beginning to find my place in the disability community: An acquaintance, who lived with physical and mental disabilities, was finally able to obtain permanent, fulfilling employment. I expected he would dedicate some of his emotional resources to encouraging others who had not yet reached that goal, or at least affirm that the struggle is, in fact, real. Within months of his triumph, however, he was already cutting fellow disabled people down, suggesting that aspiring workers should simply try harder, and campaigning to cut benefits meant to help those aspiring workers survive while they continued their job searches. The years he had spent searching for his own job, the discrimination he had battled, the pain he had suffered—he had either forgotten them altogether, minimized their power, or attributed his success to superior mettle. Whatever the reason, I drew away from him in shock and disappointment, unable to believe someone could be so hypocritical and heartless.
The idealist in me is loath to admit it, but his response wasn’t just statistically normal. His response, extreme though it was, is one I see in most people I know, including my oh-so-empathetic self. I’m working to exercise compassion and empathy more consciously and intentionally, but I still catch myself dismissing or minimizing someone else’s experiences on the bogus basis that I’ve been there, I’ve done that, and I’m on the other side of it or, at least, I’ve learned to shoulder it. Meanwhile, the nondisabled people I know are more likely to listen attentively and judge less readily, because they have not worn those shoes and do not feel qualified to do more than be supportive. You will find far too many people, disabled and nondisabled, who are quick to judge a situation even and especially when they have no knowledge of it, but most people know when they’re out of their depth, and won’t pretend otherwise.
Now that I’ve been a multiply-disabled person for decades, and worked in a disability-adjacent field for a few years, I am forced to confront the reality that lived experiences don’t automatically result in increased compassion and empathy. In fact, disabled people and those close to them tend to err on the side of harshness, reasoning that they or someone they know managed to “overcome,” which means they have little or no sympathy for anyone who is less successful. There’s a well-worn joke in the disability employment field about how case managers with disabilities are the toughest, and for the most part it checks out. Disabled case managers, and those with disabled family members or friends, may have more knowledge and may make fewer generalizations on average, but they are also likely to say something like “I was able to do this, so why can’t you?” When I wrote about my fear of blind people, this is the core of what I was describing: nondisabled people typically take me at face value after a while, but disabled people often seem to be sizing me up. In an ugly and ironic twist, I have caught myself sizing up my clients in precisely the same way.
As is my custom, I thought about calls to action before sitting down to write this post. I dislike bringing up an issue without pointing toward potential solutions, and this is no exception. Unfortunately, there doesn’t seem to be much direct action to be taken against the empathy gap, besides acknowledging it exists and fighting the instinct to judge, give unsolicited advice, or condemn when we encounter someone who is wearing shoes very like our own.
When you feel empathy, ask yourself the hard questions: Is this a pure feeling? Am I using my past experiences to offer guidance and validation? Is the advice I’m giving, the story I’m telling, the wisdom I’m dispensing welcome? Solicited? Needed? Useful? Am I sharing understanding, or centreing myself? Do I have any right to speak to this situation at all, or am I talking when I ought to be listening?
I’ll close with insightful advice from the authors of the study I referenced earlier. According to Ruttan, McDonnel, and Nordgren, it’s best to get out of your own head, place less emphasis on your individual experiences, and focus on the situation in front of you. If it helps, think of all the many people in the world struggling with the same burdens, instead of zeroing in on your personal journey.
Armed with this knowledge and these strategies, I hope we can all put our empathy to good use, and grow into a more supportive, less judgmental community. Come join me!

“My Roommate Is Blind! Help!”

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A few weeks before I was to move in with a sighted roommate, we met for coffee to discuss logistics. She seemed sanguine about the process, so I allowed myself to relax. Not until the conversation had begun to wind down did she drop this bombshell: her friends knew she was about to accept a blind roommate into her home, and they did not approve.
First came the predictable concerns: could a blind person hold up their end of household maintenance? Could blind people do much of anything at all? When I probed further, I unearthed more degrading questions: Would my sighted friend be capable of “caring for” me while dealing with her own issues, which were numerous at the time? Was she emotionally equipped to take on a disabled person on top of everything else on her plate? Would I take a toll on her mental health?
Stung, I reached out to fellow blind people to find out whether they’d encountered the same barriers. My Twitter mentions came alive, and I heard from people who had dealt with questions ranging from “How will you know if the house is clean?” to “Is it safe for blind people to cook unsupervised?” to “What if you leave the shower on constantly?” (I wish I were making this up.) Landlords, prospective roommates, and concerned hangers-on seemed content to judge blind people with limited evidence, causing embarrassment, anger, and major logistical issues for blind people seeking housing.
With guidance from many contributors, I’ve assembled a general guide for sighted people who are nervous about welcoming a visually impaired roommate. I’m not here to judge or condescend, so I hope you’ll read with an open mind, and share this with people who might need words of encouragement and advice.
Note: I use “blind” and “visually impaired” interchangeably throughout this post.

Don’t Panic

Whether you’re hitchhiking through the galaxy or preparing for a blind roommate, you must not panic, especially if you have little knowledge of the blind person in question. Until you’ve met them, you’ll be no more accurate a judge than if you were trying to guess what a sighted stranger would be like. Evaluate a blind roommate with the same criteria you’d use for a sighted one, and let that information guide your decisions. Never deny someone the opportunity to live with you just because they have a disability that makes you uncomfortable. You might inadvertently exclude stellar candidates!
External pressure from friends and family may be powerful, but don’t let it sway you. Unless they have intimate knowledge of your potential roommate, exercise caution. They may have your best interests at heart, but sound decision-making isn’t rooted in uninformed anxiety and misguided fear.

Ditch the Assumptions

Maybe you know a few blind people, and you assume this means you know what your blind roommate will be like. Perhaps you’ve never met a blind person, but you’ve seen a few on TV, or your friend has a friend whose cousin’s hairdresser’s nephew dated a blind person once, and fancies himself an authority. Whatever your experience with the blind community, remember that your roommate is as much an individual as you, and will have unique preferences, needs, and abilities.
If you take nothing else away from this post, please understand the importance of an assumption-free outlook. The overly-concerned sighted friends I referenced earlier let their assumptions run away with them, and concluded, without ever even meeting me, that I’d endanger my roommate’s mental health. This left me feeling scrutinized and unwelcome whenever they visited our apartment. I identified them as the people who viewed me as a walking, talking burden, which bled into everything I did while they were present. I doubt they were aware that I knew of their misgivings, and probably interpreted my skittish behavior as social awkwardness or unfriendliness.
Skill level, especially when it comes to household and mobility, varies widely among visually impaired people, as does visual acuity and the way that vision is used. One low-vision contributor pointed out that he can see people who are twenty feet away, but will likely run into ten obstacles on his way to that person, because that’s how his vision works. I can see a few colours and have some understanding of shape, but I’ll never read a label or notice visually that you’ve left a knife, blade up, lying in the sink. I’m a competent housekeeper but a hopeless cook; I know other blind people who can cook five-course meals and navigate transit like pros, but struggle to keep things tidy. Speak to your roommate about the specific tasks they can and cannot complete independently. Make sure it’s a respectful but candid conversation.

Make the Space Accessible

Fostering a blind-friendly household is neither complex nor demanding, but its exact form will differ depending on individual preferences. Not all blind people are particularly neurotic about organization, but nearly all of us depend on a reasonable level of predictability to function well in a common area. Keeping the environment consistent is the keystone of an accessible space. You are free to do what you will with your own space, but ensure that common areas are organized in a way you and your roommate consider efficient and manageable. Cooperation and communication are essential here: when one of my sighted roommates had moved my rice cooker for the fifth time in two months, I was reduced to crawling on my hands and knees to check the floor. Eventually, I discovered it tucked way under our kitchen table, in quite literally the last place I would ever have thought to look for it. I’m sure she was tired of receiving increasingly pointed texts asking where she’d placed this or that, but I was equally weary of having to ask at all. So, find a home for shared items, and stick to that system as much as possible. If you do move an object a substantial distance from its designated position, alert your roommate of the change, even if you think it’s insignificant to them. For people with low or no vision, an object moving even a few feet in any direction can throw us off completely, if only for a few moments.
The other adjustment you should anticipate is that some items, especially food packaging and appliances, will need to be made accessible for most visually impaired roommates. In my apartment, you’ll find transparent dots that adhere to the buttons on my microwave, allowing me to use the touch screen unassisted. When I lived in a place with private laundry access, I applied adhesive dots to make the washer and dryer easier to use. My then-roommate, who had far more vision, had to re-enable the singsong chirps the machines made, because these built-in audio cues enhanced accessibility for me. This was by far the largest sacrifice a roommate has ever had to make for me, and my needs are similar to most blind people I know. (Okay, so there was that time my roommate had to tell me I dropped an entire piece of pizza on the floor without noticing, but it was the cat’s fault, I swear.)
Your roommate may want to make similar adaptations, like a personalized labeling system. Usually, these are minor changes that won’t be intrusive or conspicuous, and don’t typically inconvenience sighted people. It’s up to your roommate to put these alterations into place, though they may need some assistance from you initially. In general, you don’t have to worry about an accessible space being an inefficient, complicated, or unlivable one. A blind-friendly household can be just as cozy, comfortable, and aesthetically pleasing as you could wish; it just takes a little time, patience, and ingenuity.
Finally, ask your roommate about their level of vision, so that you can understand what they can and can’t perceive in general terms. For example, if you accidentally leave a light on, will your roommate notice? Will excessively loud music or other distracting noises make it difficult for them to navigate safely? Could a plugged-in charging cable become a tripwire? If you combine laundry, can they sort unfamiliar clothing? Devise workarounds collaboratively, and try not to take it personally if your roommate has to remind you they can’t see. Many of us take this as a positive sign, in the sense that you’re not dwelling constantly on our disabilities. That’s definitely a win!

Embrace Job-Sharing

We’ve covered some of the ways you can help your blind roommate feel welcome and secure in your shared space. Now, we turn our focus toward what they can do for you. Should you expect blind roommates to contribute to the household in the same way a sighted roommate would?
Allow me to clamber to the highest available rooftop for this one: Yes! As I said, skill levels do vary, just like in the sighted world, so your roommate might be a great sweeper but awkward with a mop. They might be comfortable cleaning kitchens, but hesitant when cleaning bathrooms, particularly in situations when tactile feedback is limited by gloves and/or abrasive cleaning products. In my household, I avoid tasks like sweeping, because I am spatially clueless and tend to spread the dirt around in my clumsiness. I find scrubbing grimy bathtubs easy and highly tactile, though, so my partner handles the sweeping, and I handle the bathtub. When implemented cooperatively, job-sharing is an elegant solution, and tends to leave roommates feeling more egalitarian and less overwhelmed by household chores. Job-sharing is also an effective way to balance barriers relating to multiple disabilities, so that both roommates can be equally involved in household maintenance.
Oh, and if your potential blind roommate seems content to let you do all the work, that is an appropriate time to walk away, just as you would if the person were sighted.

Let Your Roommate Live

When I moved in with my very first sighted roommate, we were complete strangers to each other, matched by a program that was, in our case at least, woefully unintuitive. We discovered many points of incompatibility, for neither of us was particularly happy with the other, but her attitude toward disability was a constant wedge. Her friends would congregate in our minuscule kitchen nearly every night, quizzing me on my cooking and cleaning skills. I couldn’t put a frozen pizza in the microwave without fielding questions about how I handled every minor task without sight. I encourage questions, but I submit that rapid-fire interrogation should not take place while someone is visibly busy with tasks that require some measure of concentration. Later, when forced to be around a different roommate’s friends—the same ones who had declared me incompetent and troublesome before they’d even met me—I felt like I was trapped beneath a microscope, unable to escape unless I hid in my room for hours. While living with sighted people, I occasionally wished they could just turn off their eyes and give me a break. The feeling persists, even with my enormously respectful, partially-sighted partner. “Are you spying on me again?” has become our inside joke.
Be aware that your roommate may feel a slight imbalance, because you can see them, but they can’t see you. Respect their space as much as possible, leave their belongings alone unless you’ve asked permission to touch them, and reserve questions for times when your roommate is open to hearing them. Sometimes, as much as we may appreciate your curiosity, we just want to put our feet up and zone out. Chances are, we’ve just spent the whole day dealing with disability-related curiosity, and the last thing we feel like doing is walking straight into another question period when we get home.

Learn to Say No

No is your friend. No is not inherently mean or callous. There will be times when your blind roommate needs your help, and mostly, you’ll likely be more than willing to lend a hand. The majority of people I’ve lived with are naturally helpful, and I doubt you’ll have many occasions to deny assistance to your roommate. I applaud the instinct to be kind and say yes often, but never forget that you always have the right to say no.
Picture this: Your roommate is going grocery shopping, and would like you to help them find a few things. You often do your shopping together, but at this moment, you’re feeling ill, or busy studying, or about to head to work. Hell, maybe you’re just reading an engrossing book, and you’ve just gotten to the very best part. All of these scenarios allow you to simply say no. Unless you are deliberately bullying your roommate or breaking a previous commitment, they have no right whatsoever to argue. Presumably, you are both adults, which means you must respect each other’s time. Your roommate is not your charge. You are not their babysitter, and you do not owe them on-demand assistance.
Don’t misunderstand me: it’s healthy and normal to help your blind roommate. Ideally, they also help you when you’re in need. It’s what roommates do. I just want to make you aware that a harmful pattern can develop that places roommates in a hierarchical position where one is “the helped” and the other is “the helper.” That pattern is doubly insidious if you are romantically involved with your roommate. This is generally unsustainable, and a blind roommate who actively facilitates this dynamic is not on your side.
So, yes, you can say no to your disabled roommate now and again. It doesn’t make you a jerk, and living with a blind person is not a babysitting gig or charitable act. Indeed, many blind people would prefer the roommate relationship to be as mutual as possible, meaning the assistance and kindness flow both ways. Who knew?

Feel Better?

I really hope so! Now you know that blind and visually impaired roommates are a lot like sighted ones. They have varying skills and abilities, can ordinarily contribute to any household, and are no more likely to demand your time and energy than a sighted roommate would.
Bonus: they probably won’t destroy your mental health!
So, go ahead: move in with that blind person with confidence. If you enter the relationship with respect and openness, I predict excellent results. If it goes badly, come find me. I promise to say something comforting.
Good luck, and remember: don’t panic! Be curious, be open, be adventurous. Don’t be afraid.

“Why Are You So Angry?”

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Almost every person who so much as encourages advocacy will face this question at some point, and while I don’t get it often (my writing style isn’t what you’d call vitriolic), I have been asked this multiple times. “Sure, you deal with a lot,” they say, “but do you really need to be so pissed off about it? Do you really need to write a whole blog whose purpose is to complain, and point out all that’s wrong with the world?” My answer to this is always the same: “Huh?”

I’m not an angry person. I like my life, even when it’s difficult, and I have great faith in the idea that human beings are capable of kindness and enlightenment. I spend most of my time just being Meagan, and the rest is usually spent trying to educate, not lay blame or spew hatred at the world at large. Yes, I do go on about what’s wrong with society. Yes, I do sometimes vent my frustration on a public forum. Yes, I get angry sometimes.

Do I spend my life in a state of perpetual fury? Do I direct hostility toward the sighted population? Do I focus more on being a malcontent than on trying to make the world that little bit better? Nope. I’d much rather bring positivity into this world than anything else, even as I’m being direct and unyielding concerning my rights as a human being.

 

I must confess that I’m shocked at the public’s expectation that we should be virtuous angels, patiently awaiting the day when the world will give a damn about the injustice that is built into society’s very structure. I am amazed that people are surprised when we object to systemic discrimination and harmful stereotyping. I mean, would they shoulder these things with unwavering grace? I don’t think so. That said, do we have the right to reject all efforts to reach out to us? I think not.

 

I did not create my blog with the intention of using it as a source of fatalistic ranting. I set out to maintain a safe space where ideas could be shared, questions could be answered, and advice could be dispensed. I’ve always kept one goal in mind: how can I foster empathy and understanding? How can I describe what my life is like, and how can I use that insight to help others?

I’d like to believe that regular readers realize I’m prone to seeing the good in the world. I hope they have noticed my tendency to right wrongs and offer solutions rather than condemn specific individuals and the mistakes they make. I hope, most of all, that I make my readers feel inspired, not hopeless, and determined, not angry. I resent those disabled people whose sole purpose appears to be making “normal” people miserable. I don’t expect them to maintain a sweet disposition when they’ve been fielding the same ignorant questions and withstanding the same discrimination for years on end. It’s acceptable to indulge anger; it can be a powerful tool if it’s used correctly.

That, of course, is the key: one must use anger judiciously. There’s enough rage-fuel online without worsening the problem. It wastes time and energy we could be devoting to initiatives that improve our lives. Accessibility and inclusiveness benefit us all, whether we’re disabled or not. We can all share in the fruits of disabled people’s labour. We can all read and write blogs like this one. If we get a bit angry sometimes? Well, I’d say that’s human, wouldn’t you?