Counting My Spoons: A Life Lived in Pain

It’s easy to be philosophical about blindness. I don’t have to stretch much to say it’s opened doors I never would have discovered if I were sighted. Blindness has compelled me to meet interesting people, acquire specialized skills, and develop a readily adaptable spirit. It’s not always fun—not even mostly—but it’s not without its upsides.

I am not philosophical about the chronic pain I’ve lived with for almost ten years. A decade of tension pain and migraines has weathered and exhausted me in ways I’m still attempting to put into words. If blindness is like the common cold, interfering with everyday life but easy enough to accommodate, chronic pain is like the flu. Just when you think you’re finally feeling strong enough to conquer your to-do list, or socialize with friends, or get some writing done, it sweeps over you, leaving you in a nauseated heap. At that point, there’s nothing for it but to slink off to bed, cancelling plans and sowing disappointment as you go.

Often enough, I can hack it. How else would I manage to hold down a job and maintain some semblance of a life? On most days, I grit my teeth, slather on the peppermint oil, and plaster on my smile. I carry tissues for when my eyes water with the pain, and can occasionally be found slumped over my desk with my head in my hands, but I can usually be depended upon to seem healthy and energetic.

Usually.

If you’ve ever spent any length of time with me in person, there’s an excellent chance I was fighting pain. If you’ve tried to arrange a phone call or coffee date with me, I’ve probably pulled out at the very last minute. If you’ve worked with me, you’ve seen me press my fingers into my forehead when I think you’re not looking. If you ask, I’ll say I’m fine. Most of you know I’m full of it, but it would be far too awkward to pursue the matter.

Loved ones have received text messages like “I’m not in pain today!” People who know me well have seen me cry, throw up, or lash out when my headaches are stronger than my resolve to seem normal. Managers have heard a dozen variations of “I need to leave early,” or “I need to sit quietly in this corner until this backs off.” On the very worst days, they get “I’m sorry. I tried, but I can’t come in today.” Housemates and partners have sent me back to bed after I’ve insisted I’ll be okay. Each time feels like a battle I’ve lost.

My fiancé deals with the brunt of it. No part of our relationship is untouched by the unpredictable whims of a body in pain. Dates are postponed, and postponed again, and eventually forgotten altogether. Dinners are skipped because my migraine has sapped me of my hunger. Harsh words escape because while my control is exceptional, it is not perfect, and pain makes me feel as defensive as a wounded animal. Domestic duties are shirked, and I watch guiltily from bed as he sorts laundry I am too sore to hang because I can’t reach above my own head. Many a time, he has cooked, cleaned, and run errands while I cuddle my heat wrap and take enough Excedrin to make an elephant tremble. I interrupt intimate moments, rolling away to hide angry tears; I am too tired, too sore, too weak to participate. Through it all, he is incredibly understanding, but the inequality is its own kind of pain.

And then there are the good days: days when I’m thrumming with energy, ready for anything. During these rare days, sandwiched between “okay” and “terrible,” I sing, clean, write, and tackle all the tasks I’ve left undone. I squeeze every moment of life I can into these precious pain-free days, balancing my enjoyment of the freedom with the knowledge that it never, ever lasts. My good days fool everyone into believing I’m all right. Unlike me, they still have faith that it’ll stay that way.

The crash, after a string of good days, is the worst.

I count my spoons with care, trying to account for the unpredictable. Do I spend this “good day” doing housework or writing? If I only have the energy for one social gathering, but I’ve booked two, which should I cancel? Which friend would I rather upset? Whose disappointment is easier to bear? Which task can I afford to push back? Since work is normally my top priority, and getting through it each day is costly, what should I do with the few hours before bed?

Know this, dear reader: my heart is so much bigger than my energy. My desire to connect with you, return your email, meet you for lunch, text you when you’re lonely, help with your creative project, is infinite. My ability to fulfill that desire is decidedly finite. If I’ve missed your call, cancelled our plans, failed to meet your deadline, ruined your good time with my exhaustion—I am truly sorry. I want to do better. If I had enough spoons to make everyone happy, I’d use them, because all my friends and all my family members and all others who depend on me are worthy.

So I ask everyone I’ve hurt, everyone I’ve disappointed, everyone I’ve let down: forgive me. I am getting better at this pain thing, but I am still learning. I don’t always distribute my spoons wisely. I overestimate my strength and overbook myself. I make promises I fully intend to keep, and need more time than I thought because work and basic housekeeping and mere survival take precedence. On good days, I sometimes forget to be careful, and pay for it on bad days. And, readers, I know you’ve paid for it, too.

No, I’m not philosophical about pain. I can never pretend it opens doors, or enhances empathy, or makes my world a richer place. Mostly, it just makes every little thing I do harder and more complicated. It turns an organized, driven person into an unwilling canceller of plans. I’m nothing if not adaptable, though—thanks blindness—and I’m slowly learning to count those spoons. I’m learning strategies to keep the pain from taking over my life. I’m becoming more accurate in measuring my energy levels and prioritizing what really matters.

In the meantime, I ask for patience, not only for myself, but for everyone you know who lives a life in pain. No, we’re not always fine, and no, we can’t always tackle what needs tackling.

But we love you. We’re trying. We’re playing the worst of all juggling games, and we are so, so tired.

But by God, we’re trying.

 

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Two Years of Paratransit: Sad Truths and Hard Lessons

I’ve been a paratransit user for almost two years, and I don’t like to talk about it.
The reason I keep relatively quiet about my paratransit use is that I understand the stigma that comes with being a frequent rider of the short bus. Assumptions are made about my supposed lack of self-respect. Pity and scorn flow freely from disabled people, many of whom are former (and to their thinking, emancipated) paratransit riders. Horror stories are dredged up from decades past, often third or fourth-hand and seeming more dramatic with every telling. Potential employers cringe.
Whatever you might think of paratransit services, the reality is that they exist, many people depend upon them, and until we live in a utopia where public transit is perfectly accessible and adequate mobility training is available to everyone, it’s going to keep existing. I’d prefer to focus on the ways it needs to improve, rather than insisting it needs to be eliminated.
Here are some uncomfortable truths and tough life lessons I’ve learned since becoming a regular paratransit passenger. Sharing these will, I hope, make for interesting reading. Beyond that, I hope this post will be engaging for those who have had similar experiences, and instructive to those who want to educate themselves about paratransit and the people who use it.
Disclaimer: Paratransit services can vary widely from location to location. My personal experiences may not reflect those of all passengers.

Personal Space? What Personal Space?

Paratransit services are typically designed for a vast range of clients. Some clients, like me, require very little assistance, while other clients need help with basic tasks like climbing into the vehicle and fastening seatbelts. Like many one-size-fits-all solutions, paratransit drivers are given training that isn’t able to address every possible situation. Drivers are often trained to assume clients are completely incapable, because not all clients can communicate how much assistance they need.

This means drivers will lean across me to fasten my seatbelt. They will place their hands on me to steer me into a seat. Occasionally, they’ll try to guide me in unwieldy ways: by the hand, by the shoulder, even by the waist. Once I make it clear I don’t need or want this assistance, most drivers back down and apologize, though the odd driver will argue. Even so, I routinely find myself physically handled in ways most people would find invasive, despite repeated assertions that I don’t want to be touched without prior consent.

While I recognize that this pattern is mostly the fault of training that tries to do too much for too many, it’s indescribably wearing to flex your advocacy muscles day after day–muscles you’d normally reserve for the general public. More than once, a fellow client has violated my personal space in ways that are wildly inappropriate, only to have drivers shrug and assure me I’m in no real danger. I’m not in the habit of fearing fellow disabled people, but that’s not of much comfort when someone is stroking your arm and tugging repeatedly on your hair.

Even though paratransit is a service built specifically for disabled people, it doesn’t always feel like a very safe one.

Nine Rings of Scheduling Hell

Coordinating the schedules of thousands of people is no mean feat, and I admire the staff that somehow manages to make it all come together. Much as I respect the complexity of the job, I can’t help but notice that my time is treated as elastic and unlimited. I book in such a way that I’m far too early, just to avoid being far too late. Trip-booking is a logistical nightmare, because:

  • The pickup window isn’t always based on when you want to arrive at your destination. In my city, it is based on when you want to be picked up. So, you have to estimate your travel time within a half hour window, and hope that estimate is accurate.
  • The current policy for the service I use states that a client can be kept in the vehicle up to 90 minutes. Depending on scheduling, weather, and traffic, it can take over an hour for a commute that would normally take about 15 minutes. Good luck planning around that.
  • If a driver picks you up after the half hour window has ended, they are considered “late.” However, “late” is a pointless distinction because drivers arrive when they arrive. A driver missing the end of your window just means you’ll be waiting as long as it takes, regardless of how time-sensitive your personal schedule might be.

Many clients who use paratransit have jobs. That means we need a practical scheduling system that allows us to have a reasonable amount of control over when we’ll be picked up and dropped off. Employers don’t appreciate unpredictable employees, and who can blame them? In my city, my trip to work is considered no more important than a trip to the mall, or to church, or to Starbucks.

The worst bit is the apparent bafflement and annoyance booking agents and dispatchers express when I insist that my time does matter. Shocked as they are that I don’t only go to church and medical appointments, there isn’t much regard for my time–and that disregard extends to many disabled people I know. For a group that already struggles to find and maintain employment, a service that doesn’t prioritize a working person’s time is one more needless barrier in a line of others.

Change Ruins Everything

Besides my job, whose schedule is quite rigid, I tend to lead a rather spontaneous life. I’ve always been an agile gal who didn’t mind sudden changes–until, of course, paratransit became part of my life.

Since my trips usually have to be booked several days in advance, and must be cancelled with at least two hours’ notice, paratransit is not ideal for someone with a dynamic lifestyle that is subject to change without much warning. This isn’t so much a flaw in the system as it is an unavoidable consequence of trying to make one service work for thousands of busy people. It’s understandable that paratransit wouldn’t be able to accommodate sudden schedule changes, and I’ve made my peace with that, making other arrangements for those times when I’m left without a ride.

But there’s a darker side to this issue. You see, for a service that is tailored to the needs of disabled people, paratransit is surprisingly unresponsive to some of our most basic needs. I have migraines and chronic pain, neither of which are in the habit of giving me 24 hours’ notice before they strike. Since I can’t always travel when dealing with severe pain or nausea, I find myself cancelling trips at the last minute more often than I’d like. Agents sometimes grumble, but once I explain, they don’t penalize me.

At one time, though, this was not the case in my city. A friend and inveterate paratransit user remembers a time when cancelling at the last minute was always penalized, regardless of the reason. Missing too many trips could result in suspension, which is a scary thought for people who rely on paratransit to take them to important appointments. It took considerable advocacy from the disability community to make the city realize that an inflexible service for people with disabilities made no sense whatsoever. Our lives are complicated, and we can’t always bully our bodies into cooperating with us. A service that doesn’t bake this reality into its policies serves no one.

Welcome to the Margins

I’ve always identified as a marginalized person, simply because having multiple disabilities seemed to place me well within that category. Not until I took paratransit did I get a glimpse of what being marginalized could look like. Every day, I meet clients who are so far on the fringes that it feels as though we occupy two different worlds. Some can’t communicate verbally, and struggle to make themselves understood when a driver goes the wrong way, or drives right past their house. Others love to chat, but are ignored or grudgingly tolerated by drivers and clients alike, whose patience and compassion have either eroded over time, or were never present at all. Still others are struggling with sudden injuries and medical crises that have permanently altered their lives. I’ve listened as clients howled with pain, trying to maneuver themselves into high vans and buses. I’ve heard seniors apologize profusely as the driver buckles their seatbelts, humiliation colouring their voices. I’ve sat quietly by, helpless, as a client tried in vain to engage their escort in conversation, each overture rejected. I’ve cringed in my seat as a nonverbal client screamed in pain, or distress, or some other violent emotion I couldn’t decipher, while the driver focused on the traffic ahead.

No doubt these clients live happy, fulfilling lives, and I’ve chatted with enough of them to know they are just as interesting, warm, and spirited as the rest of us.

But, in the confines of those vehicles, it can be hard to forget about the margins that hold them in place. It can be hard to get over the fact that I’ve ignored people like this myself, when having a bad day or feeling irritated by something else. It’s impossible to pretend I haven’t played a part in the marginalization of at least one of these people, out of fear or ignorance or a desire to be left alone. It’s hard, in other words, to praise the progress we’ve made when confronted so frequently with how far we still have to go.


There are many things I appreciate about paratransit. Door-to-door service means I feel safe, even in dangerous neighbourhoods. I can avoid pitted sidewalks and inaccessible areas. If I don’t know the route to my job interview or my doctor’s office, I can still get there. My abysmal outdoor mobility skills don’t completely constrain my life.

By and large, paratransit services appear to be run by compassionate people who really do care about managing it well. They want you to get the times you asked for. They care if they pick you up outside your window. They show empathy when you’re in pain, and they’re happy to help where they can.

Still, we mustn’t get complacent. Paratransit has many deeply-rooted problems, and since it fills service gaps for so many people, we need to fix what we have rather than tearing it all down in a fit of cynicism, or dismissing those who still use it.

Now that you’ve reached the end of this post, I hope you’ve offloaded a few assumptions and re-evaluated some stereotypes. I hope you know that there is no archetypal paratransit user. There is no typical use case. There is no neat, tidy template into which you can shove those of us who, for one reason or another, need a special service to get around.

Whether you’re a paratransit user, an employer, an educator, a social worker, or a paratransit staff member, I hope you come away with plenty to think about.

Got some thoughts to share? I think this post calls for a lively comments section, don’t you?

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

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!”

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.

Bidding Farewell to the Zone BBS

Until my mid teens, exposure to the internet–and, thus, to fellow blind people–was fairly limited. The few blind and visually impaired friends I did have were strewn across Canada, and most of us only met up at sponsored summer camps and workshops. Sporadic phone calls and MSN conversations were sometimes enough to curb the worst of my isolation, but “social networking by the blind, for the blind” was still a foreign concept to me.
When I was sixteen, a blind acquaintance pointed me to “The Zone,” a highly-accessible social networking site designed by blind people, for blind people. By then, the site had already existed for several years, and had amassed a lively community. I was resistant to join in at first, reasoning that talking about nothing but disability with thousands of strangers would quickly become tiresome, but I soon discovered the community discussed everything from cooking, to sports, to gun legislation, and everything I could possibly imagine in between.
For a number of years afterward, I spent considerable time on the Zone. I found many interesting acquaintances, a few cherished friends, and even romance. The site had its share of toxicity and drama, as any lightly-moderated community will, and I’d be heavy-handed with the nostalgia if I claimed all my interactions on the Zone were pleasant. I was asked about my cup size by total strangers; harassed by persistent men I was forced to block; mocked for agreeing or disagreeing with the wrong members; viciously attacked on discussion boards about the most innocuous topics. Sometimes I had little understanding of what I’d done to deserve or encourage these behaviours. The Zone had a few members so notorious that members of all genders presented me with lists of names when I first joined, to spare me considerable grief. As is typical of most teenagers, I did not always heed these kind warnings.
Irritating and frustrating as the Zone could often be, I also found comfort and solidarity there. Most members were helpful and friendly, always happy to help with an accessibility issue or provide company to pass the loneliest evenings. Through the Zone, I discovered that my preconceptions of blindness were not only inaccurate, but hopelessly limiting. There were myriad ways to be blind in this world–at least one for every member on the Zone–and within this vibrant community, I realized my personal potential was much greater than my small-town life had shown me. Blind people could be teachers, medical professionals, cooks, counsellors, designers, stay-at-home parents, and nearly every other type of professional I could picture. I could, within surprisingly few limits, be whatever my talents and skills would allow. Further, there wasn’t just one correct, standardized way to live a life with disability. I could be a meek mouse, fiery advocate, or something in the middle, and all of these choices had equal validity. The introduction of one simple website had opened up my world, and my mind, leaving a legacy I’m still exploring. In so many ways, the Zone’s complicated, dramatic, and gloriously diverse community made it possible for me to find out who I was, and where my place ought to be in a world that is equally complicated and diverse. Without this head start, I might have found young adult life infinitely more challenging, and I’d have had far fewer friends with whom to share the journey.
When I found out the Zone was finally closing down, I won’t pretend I felt much regret. I had not visited the site in quite some time, and did not miss the bickering, rage-fuel, and general nastiness that had begun to consume the atmosphere as the community shrunk. These days, I have forged my own community through mainstream sites, and find it to be a friendlier, safer place to spend my time. But, as I’m sure many former Zoners are doing this weekend, I paused to think of all the people I’ve met, the perspective I’ve gained, and the personal transformations I’ve undergone since I became a member. Nothing that has played such a large role in so many people’s lives can disappear without a moment’s bittersweet reflection.
All in all, I think the blind community has essentially outgrown the Zone. We are now sufficiently-entrenched in other online spaces, so that we no longer need an isolated little hub of our own. Our contentious opinions and colourful discussions have found other homes. Yet, this is the end of a significant era, and I could not let it pass without a few words about the people I met there, and the joy they gave me.
Good-bye, Zone BBS. It’s been … well … real.

Meet The Human Behind The Accessibility Request

My accessibility requests, and those of most people I know, are never made frivolously and rarely involve costly or difficult action. Despite the fact that accessible design typically benefits those who implement it (most of my requests take the form of “I want to give you my money but your online store or facility or campaign or social media post or software is inaccessible,”), not everyone reacts as calmly as I’d hope. The most common response, in my own experience at least, has been silence. Companies are particularly prone to ignoring access requests, either because staff doesn’t have the resources to deal with them or because accessibility is not prioritized. Individuals are nearly always willing to respond, though they may not do so favourably.
If there’s one thing I want the world to know about the average person making an access request, it’s that we are ordinary human beings trying to make life easier for ourselves and others. I’ve read one too many comments, from disabled and nondisabled people, complaining that we’re all getting spoiled these days, accustomed as we supposedly are to wielding our access rights like a club. There appear to be those who believe that we hysterical disabled people are intoxicated with our new position of relative influence, and are using it to harass innocent people and businesses, fueled by sadistic pleasure or a misplaced sense of victimhood.
Instead of attempting to refute this, I’ll describe what my latest access requests have looked like. You can judge for yourself whether I carry them out in a manner you’d consider acceptable. They may not reflect how all or even most disabled people request accessibility, but they should, at least, provide some perspective.
A few months ago, I wrote to a stranger about her fundraising campaign. I wanted to give her my financial support, but couldn’t find a description of the shirts she was selling. I wrestled with myself for hours before contacting her at all, afraid to bother or place undue strain on her. I composed three drafts of my message before sending it, ensuring there wasn’t a single note of urgency, discourtesy, or judgment. My heart pounded and my stomach churned with anxiety. I’d been eviscerated publicly for an access request once before, and even though I’d had positive experiences since that incident, once bitten, twice shy. I fretted incessantly, Just as I had over numerous other such requests, and couldn’t rest peacefully until I’d received a reply which, thank goodness, was exceedingly kind. Even though the experience went as smoothly as possible—including assurances that she appreciated my message and was glad I’d reached out—no part of it was enjoyable or empowering for me. The whole ordeal was emotionally exhausting, which reminded me why I rarely bother to report accessibility bugs unless they threaten my job performance.
When I emailed CBC Books about an inaccessible infographic, tweeted Success Magazine about an article I couldn’t read properly, asked Buffer about their accessibility features, I endured similar feelings of uncertainty. What if I was dismissed as difficult? What if I gained a reputation for being a demanding customer? Had I worded my messages politely enough to be acceptable but firmly enough to be taken seriously? Had I upset anyone? Would anyone write back? (For the curious: CBC Books and Buffer responded with admirable grace and did everything they could to help. Success Magazine didn’t get in touch.) In the past, I’d tried taking a slightly bolder tone, and had been chased off by complete strangers who had decided I was only making the accessibility suggestions to harass people and waste time. Disabled people have nothing better to do, right?
Over and over while making these requests, I caught myself apologizing—for being blind, for encountering issues, for asking that those issues be resolved. In essence, I was apologizing instinctively for existing, and for the mortal sin of wanting to use someone’s product or service. My feelings and manner remained free of entitlement or self-importance. I was just one more customer asking for help, but, all too mindful of society’s general attitude toward accessibility, I remained apologetic to a degree that might be comical if it weren’t so depressing. As you might imagine, I rather envy those disabled friends who make requests with a quiet dignity I have yet to emulate. They might be just as nervous as I am, but unlike me, they don’t spend much time agonizing over the details.
I wonder if the companies and individuals who have responded to me with silence, canned replies, or outright insults knew how much trepidation I felt while reaching out to them. The optimist in me wonders if they’d treat me differently if they had an inkling of how much courage it takes to address a person or entity I have no power to influence, asking that my needs be met. Perhaps these interactions would play out differently if the people behind the hurried dismissals and cutting rebukes framed my requests as roundabout ways of giving them my money, or my time, or my support. Surely a customer or user reporting any other type of issue would be treated far more kindly? Anyone who is going to great lengths to improve usability obviously wants to patronize your establishment, read your content, give you their money, raise funds for your cause, or share your information. Where’s the entitlement, the victimhood, the sadism in any of that?
I can handle silence when I make access requests. Being told there’s nothing that can be done is something I can bear. There are worse things than receiving the standard brush-off: “I’ll look into it.” I can even roll with the impatience—often clumsily-concealed–that creeps into people’s voices when I ask for help locating items in a store or filling out paperwork. I, too, live and work in this complicated world, and I know what it is to be restrained by policy, or bureaucracy, or a severe shortage of time. Not every request can be met, and not everyone is going to take that news well. I understand.
What I cannot handle graciously is the implication that my access needs are trivial. If I am accused of being too demanding, of wasting precious time, of taking up space reserved for more important people, I’m no longer willing to nod meekly and shuffle away. I cannot, in good conscience, pretend to agree when accessibility is treated like a silly new fad that will, with any luck, fade away, along with all the irritating people who ask about it.
I could list several reasons why people should care about accessibility, but it’s been done, and done by people much wiser and more eloquent than me. Instead, I’ll tell you how a well-handled access request makes me behave as a customer, user, reader, and funder. People and companies making an effort to attend to my requests have my loyalty. Someone who demonstrates they are sensitive to the needs of others earns a position in my good books. If the manager of a fundraising campaign agrees to improve usability for disabled people, they’re almost guaranteed to receive whatever money I can spare. A company that handles my requests with courtesy can count on my business, and I will make a special effort to promote them more widely than ever. Buffer, CBC, L’Occitane—these are examples of companies I’m proud to support not only because they make quality products, but because they have shown me, whether personally or generally, that they prioritize accessibility when it’s brought to their attention. This is even more pronounced with solopreneurs: Daryl Lang Jewelry will always be my go-to, not only because she makes beautiful things, but because she always uses clasps and designs that accommodate my moderate difficulty with fine motor skills.
Conversely, companies and individuals that don’t make accessibility part of their mission are less likely to receive my business or promotion, not out of spite, but because I can’t use what they offer. An inaccessible online store isn’t going to encourage a disabled person to shop there. An unusable piece of software will drive traffic to its competitors. This is, at its core, about business, not ethics or morals or ideologies.
I understand that access requests will not always be presented politely. There will be those who will come to you angry, impatient, at the end of a too-short tether—and they may or may not have valid reason for those emotions. Every now and again, someone will point out an accessibility issue with an imperious, contemptuous air. Those making access requests will not always present solutions that are within reach, especially for small businesses. Some of the people making them may not even have solutions to offer. And, yes, you may be hit with an unjust lawsuit by someone seeking to capitalize on existing accessibility laws for their own gain. All these things are possible.
More often than not, however, you’ll be dealing with someone who doesn’t enjoy asking for assistance and feels at least as awkward and inconvenienced as you do. They just want to move through the world with as much ease and independence as they can, and identifying barriers takes guts, especially when asking that those barriers be removed or mitigated. Further, most disabled people lead full, active lives, such that they have limited time to give accessibility feedback. The process takes time, even when the response is cooperative, and I regularly skip opportunities to report issues because I have several other pressing matters dividing my attention. We don’t all sit around thinking up new and clever ways to make people’s lives harder. Shocking, I know!
The lesson here? Life is very short indeed, but it’s not too short to be kind. Respond when you can, fix issues where possible, and always be compassionate. Just remember: we’re all on the same side.

A Disabled Person Refused Your Help? Keep Calm And Carry On

Here’s an uncomfortable truth: one of the inescapable pitfalls of blindness is a lack of precision. Even with the help of a guide dog, no blind person is as precise in their every movement as most sighted people. In familiar surroundings, we can dazzle with our ability to navigate with grace, but take us outside our elements and we can flounder. It will take us a little more time to find door handles; locate a cup someone has just placed in front of us; connect with someone else for a handshake; retrieve a dropped object. There may be fumbling. There may be moments of awkwardness in which our questing hands are a quarter of an inch away from what we’re seeking—just enough to drive sighted people crazy—though we’ll always figure it out eventually, either on our own or by asking for specific assistance.
And you know what? That’s okay.
The nondisabled person’s obsession with precision can be taxing. If it takes me a second longer to find an object than a sighted person deems reasonable, I can expect to have frantic instructions lobbed at me. I can also expect an exasperated sigh, or a pitying tongue-cluck. Often, sighted passers-by say something like “I hate watching you looking for stuff! It just kills me. It’s right there!”
The situation will usually escalate, and I’ll get grabbed, even and especially by people I don’t know. Crazed as they are by the idea of someone taking seconds longer than is typical to accomplish everyday tasks, many nondisabled people are filled with an insatiable need to speed things up.
You may accuse me of hyperbole, and if you’ve never seen this phenomenon in action, I wouldn’t blame you. Trust me when I assure you that this happens, and it happens all the time.
A few weeks ago, I was entering a crowded room. My plan was to emerge slowly, and search methodically for the empty seat I knew had been saved for me. Before I had time to take one step forward, someone detached herself from the crowd, galloped toward me, grabbed my arm in a disconcertingly tight grip, and proceeded to escort me to my seat as though I were in danger of being trampled by invisible elephants.
“I’m sorry,” she gasped, not sounding particularly sorry at all, “I know you can find it yourself, I just…it’s the mom in me, you know? Can’t help it!”
(What I did not say: “Yeah, but you’re not *my* mom, and when my mom pulls stuff like this, she hears about it. Ask her. She’ll tell you.”)
Soon after that incident, I was approaching a freshly-mopped patch of floor. A woman warned me of the wet-floor sign, which I appreciated, but she was not satisfied with my cautious pace. As I prepared to walk past her, she rushed to my side—herself in danger of slipping on the floor about which she was so concerned—wrapped her arm securely around me, and led me across the wet patch with such delicacy, you’d think we were crossing a frozen lake while ice shifted ominously beneath us. I felt like someone’s frail grandmother, (please don’t do this to your grandmothers), and since I was in something of a hurry, I was especially displeased.
People have decided, without any input from me, that I cannot be trusted to climb stairs, walk down hallways, find doorways, eat, pull out chairs, cross streets, use escalators, walk down ramps, and get into vehicles safely. (This is not an exhaustive list.) For so many people, I am either seconds away from grievous injury at all times, irritatingly clumsy, or both. There is something in some nondisabled people’s minds that can’t handle the idea of taking your time, making mistakes you can learn from, doing things your own way. The insistence on everything being as precise and efficient as possible dismisses any alternative way of doing a thing if it’s even a beat slower. Each time someone says “Oh forget it! I’ll just do it! It’s faster!” I get a tiny ache in my gut.
The crux of this isn’t so much that I object to people being helpful or overly concerned with my safety. I’m grateful that anyone takes enough notice of me to care whether I break my neck on a wet floor or get trampled by elephants. It’s the irritation that causes me the most pain. The idea that someone’s blood pressure would spike just by watching me put an empty fork in my mouth or backtrack to find a landmark I miss cuts deeply. Am I truly that painful to witness? Is this the root of all that unwanted, unwarranted pity?
Yes, sometimes a sighted person’s methods are quicker. It often happens that I’m happy to surrender a menial task to someone with working eyes because they’ll get it done at least as quickly as I can, and may do it more efficiently, too. I’ve never been the most competent blind person in any room, so I freely acknowledge and accept that in matters of mobility, especially, I’m a little slower than most. My spatial awareness isn’t all that reliable—not a blindness thing, just a Meagan thing—so I’m content to concede that sighted people get around with accuracy that’s beyond me, especially because I don’t have a dog’s eyes to help me.
Despite how nondisabled people feel about it, I’m quite comfortable with this reality–probably too comfortable with it, by some standards. I’m accustomed to being a bit slower, a bit more hesitant, a bit less exact, and after about two decades of it, it’s not a concern for me. I am quick and clever and efficient in the ways that matter to me. I can type like the wind. I can research well and write quickly. I can edit with a thoroughness that is at odds with my turn-around time, which has been praised for being unusually swift. My public speaking and facilitation skills are rapidly becoming my strongest assets. In these ways—the ways that pay my bills and make me useful to society—blindness interferes very little, if at all.
All things considered, why should I despair when it takes me ten seconds to find a door handle? Is it worth being upset because I walked past the staircase I was looking for and had to double back? Will anyone’s quality of life suffer because I tried and failed to give them a high five?
Nope.
So, nondisabled people, as much as I understand and appreciate your wish to help, please keep calm, and carry on if your help is not required. Please keep your hands off strangers, and even off friends and family members unless they have given permission. Remind yourself, when you feel that urge to “fix” a situation, that precision isn’t everything. Efficiency isn’t everything. Perfection isn’t everything.
Independence, autonomy, consent, respect—these are everything.