Battling for My Castle

I’m not a home body, per se, but I do enjoy being home. My home is the one place where I am in my element. I know where everything is, I’m familiar with the obstacles, and nothing dangerous is likely to trip me up. A blind person’s home is often the lone setting in an ever-changing world over which they have any control. They likely don’t need a mobility aid to move around it with ease. They can feel safe, navigate efficiently, and enjoy a space that is adapted for their needs, instead of moulding to everyone else’s. In our homes, generally speaking, we are at liberty to be completely ourselves, with as much independence as possible.
It’s good to trip and run into things sometimes, to learn to orient in unpredictable environments, because the world won’t always be ideally set up in a way that’s safe and simple for blind and other disabled people. Hell, my parents were advised by someone from the Canadian national Institute for the Blind that they should routinely rearrange the furniture without warning me, just to keep me on my toes. They didn’t heed the advice, thank goodness, and only rearranged the furniture when they fancied a change. Like me, they believed it was important that disabled people have one home base where they can put those tools away and rest.
But the blind person’s home as sanctuary can only exist if housemates, partners and/or family members agree. And it can only work if the blind person in question feels they deserve such a home, or at the very least, a smaller space within their home that works well for them.
I didn’t consider this controversial. An alarming social media experience proved me wrong. As it turns out, plenty of disabled people don’t believe either of these things. They don’t think household members have any obligation to a disabled occupant and, more bewildering still, they seemed to think the very concept of being accommodated in one’s own home is unreasonable, untenable, even greedy.
Yes, many of the very people who insist coffee shops, grocery stores, schools, workplaces, and all manner of public spaces be accessible and accommodating don’t think that applies to their own families. Their own spouses. Their own parents and siblings and roommates.
How do I know this? I discovered it the hard way, by posting what I thought was an innocent question on social media, and being totally flabbergasted by the results – so much so I deleted the thread within the hour, convinced no good could come of it.
In the thread, I asked for suggestions to help my now-husband get better about keeping our home safe and blind-friendly for me. Nothing draconian. I wasn’t asking that he label every object in the house, or memorize complex organizational systems. I didn’t require him to arrange everything precisely the way I wanted, or clean to absurd levels, or, I don’t know, walk around with a blindfold so he could experience my suffering. Our shared desire was for him to learn how to be more conscious of things like open cupboard doors, pushed-out chairs and other hazards that are hard for me to anticipate and incredibly painful when bumped at a good clip.
I don’t gallop around my apartment, but I like to walk at a brisk pace, as anyone might in their own houses, without fear of stepping on an expensive tablet or sustaining mild to moderate injury. Piles of laundry on the floor? No big. Cluttered counters? Whatever, I’ll deal. Smashing into a protruding closet door or banging my hip on an open drawer? No thanks. I got so sick of toppling half-full water glasses discarded in precarious places that I began dreading the walk through my own kitchen. I wanted to stop bashing my toes and banging my head, and my partner was tired of watching me get hurt. He felt terrible, he couldn’t understand why he was finding it so hard to accommodate such a simple request, and he thought I might get some good feedback online.
Here is a paraphrased composite of what I got back. Lots of people were lovely and helpful, but those comments aren’t the ones I want to highlight today.

  • “You think it’s hard now? Try having animals and kids around.” (I have neither, so how is this relevant, exactly?)
  • “Are you sure he’s not doing this on purpose? Sounds like domestic violence to me.” (Huh?)
  • “Your expectations are way out of whack here. It’s his home too.” (Right, but I’m getting hurt. Regularly. In my own house. And he wants that to stop as much as I do, so…)
  • “This is normal. You just have to get used to it. I walk slowly and hold my hands out and stuff.” (In your own damn house? All the time? Do you use your cane as well?)
  • “You can’t micromanage a housemate and you shouldn’t try. That’s really controlling.” (But he’s my fiancé. And he wants to be better. He hits his head on his own open doors, you know. No one is having fun here.)
  • “Wow, he sounds like an idiot. Who can’t remember to close a cupboard?” (How understanding of you.)
  • “This is just the reality of blindness. You just deal. I do.” (Good for you?)

Thinly veiled judgment followed well-meaning but mystifying concern, with accusations of controlling behaviour bringing up the rear. All that, and very few good suggestions buried in the mix. I’d been prepared for people to ask why my partner was having such difficulty. I was even ready for the odd comment suggesting it was my own fault, because there ain’t no victim-blaming party like a disability victim-blaming party. I must admit, however, that I had not imagined I’d encounter such a large and diverse group of people for whom no one had ever, it seemed, made a real effort to keep their home environments safe and reasonably blind-friendly.
I’ve never lived in a perfect space myself, and I’ve had a few housemates who made no effort at all, but that didn’t stop me from aspiring to something better one day. That didn’t convince me I’d better give up altogether and shuffle along in a space designed for everyone’s comfort but mine. Did that make me especially entitled? Suddenly I wasn’t sure.
I’ve put off writing about this for something like a year, not because I didn’t have a lot to say, but because I was so confused and afraid to prod the hornet’s nest once again. I was second-guessing myself. Was this a wake-up call that I was being too demanding? Perhaps this philosophy comes from somewhere legitimate and understandable. If someone took the time to explain it to me, I might head some way toward comprehending it. Maybe all this cynicism stems from too many demoralizing conversations with kids and spouses and parents and siblings who just didn’t get it, who wouldn’t or couldn’t make changes, who didn’t see the point. It could well be I am unusually privileged to live with a partner who wants me to be as comfortable in my own house as he is, even if it means making a few adjustments.
But I don’t think I will ever agree that strangers owe me more than those with whom I share my home. I won’t claim to know what these commenters were thinking, but from where I’m standing, it looked like they’d persuaded themselves that it’s better to call someone controlling and unrealistic than to admit they might deserve more – that more might be possible if they ask for what they need, and do the work to make it happen.
Maybe this perspective isn’t strange to anyone else. Maybe I’m in the minority. But I stand by this: If you think your workplace and your local library and your school and your dentist’s office and your government should accommodate your access needs, but you don’t think this also applies at home, that’s a damn shame. The notion that your boss, your professor, your elected representatives are more obligated to you as a disabled person than your own family is inexpressibly upsetting to me. The very thought that you feel more comfortable advocating for your rights as a citizen or employee or voter than as a spouse or a housemate is heartbreaking. The idea that you’d belittle a fellow disabled person for wanting an accessible home, the same way you want accessible public spaces, makes me sad and angry and deeply frustrated.
So, okay, I’ll concede that practice is useful. Expect the unexpected, and all. I should hone my instinct for caution. I should be ready for anything when I’m out and about. But I have the rest of the world to test me that way–at work, at other people’s houses, out on the street. I don’t need or want that at home. When I come back from a long day of working around other people’s idea of well-designed spaces, after a day of dodging distracted texters and avoiding people’s pushed-out chairs, the last thing I want to do is more of the same. I want to sit back, relax, and know that when I get up for another cup of tea, I’m not going to need a cane or hands-out-shuffle-walk to get there safely.
My home is my castle. It is organized in a way that works for me, without unduly inconveniencing the one who shares it (he has since learned to close doors, and I can’t remember the last time I got hurt around here). My home is my one safe place, my retreat when navigating a world that isn’t designed for me becomes too much. I intend to keep it that way, and for that, I will not apologize.

Stronger (and Clumsier) Together

Many people have been working from home for a long time, and are used to doing everything by phone or video chat. The novelty has worn off for them, and they know how to conduct themselves gracefully, more or less. But for the rest of us, the last couple of months of teleconference meetings and online group chats have been, well, an adjustment. Managing group chats and teleconferences is an art, and we are not yet artists.

I’m not a phone or video chat person at the very best of times, and these are not the best of times. Much of that aversion is due to my general preference for written communication, and fierce discomfort with awkward situations.

It turns out some of it is a new understanding of how much the average person depends on nonverbal communication. It’s a cliché at this point, and blind people are frequently taken down a peg via sketchy statistics about exactly how much communication is unspoken, but it’s never been slammed home quite like this for me before. Physical distancing has meant no one can see each other well, or at all, and boy, does that change things.

I don’t know about you folks, but all my phone and video chat meetings have felt infinitely more confusing, and much less satisfying, than in-person gatherings. The flow of conversation is stilted, even when audio quality is high. People interrupt each other constantly, and it’s clearly accidental. Audio and video delays make it harder for people to follow group conversations, since what they hear does not line up with what they see. Larger meetings have lost their effortless interactivity, because people can’t read a room when there’s no room to read. A lot of the visual cues sighted people use to make sense of complex group dynamics have vanished, and they’re all tripping over each other as a result.

Me? I’m just my ordinary clumsy self, no worse off than usual, but I’m suddenly contending with everyone else’s confusion, which makes for awkward times.

And so, once again, I am reminded that I should be a tiny bit kinder to myself when I’m out in the world, mingling with people who have a distinct social advantage. COVID-19 has encouraged me to acknowledge how much effort and skill I bring to all my social interactions, and to admit that, hey, I’m actually pretty good at navigating social situations while missing the majority of cues on which everyone else relies.

All these years, I, as well as sighted people around me, have been hard on me for the cues I miss, the delicate social dynamics I’m oblivious to, the times I interrupt people because it’s apparently not my turn to speak. I have sat through hundreds of fast-moving group conversations, frantically filtering the chaos, opting not to speak at all in many cases to avoid the awkward social dance.

Is someone about to speak? Is it time yet? Are people looking elsewhere? How have people reacted to what I’ve just said? Everyone is quiet. Whyyyyy are they so quiet? Are they processing? Waiting for more? Was it okay? Am I doing okay?

It’s obvious, I know. Of course this was happening because a hell of a lot goes on in silence, where I can’t perceive it, in ways I can’t possibly interpret. Of course I should expect to struggle more and feel clumsier; I’m working with less than half of the information everyone else has! Shouldn’t a person who has been blind for a quarter-century know that without visual input, everyone else is just as clumsy as me?

Well, yes. And I did know it, intellectually. Watching it play out firsthand, however, has been interesting and, dare I say it, validating?

Watching socially adept sighted people make ‘blind person mistakes’–getting confused, losing track, interrupting, addressing people who have already left the conversation, going quiet because it’s all too much–well, it’s been helpful. I take no pleasure in it, and I have no doubt we’ll all find our groove soon. But it’s been an excellent opportunity for me to realize, all the way down, that I’m doing pretty okay out here.

If you’re a fellow blind person who has gotten down on yourself for missing cues and failing to interpret the impossible, I invite you to chill. I also invite you to extend that chill to other blind people as they flounder through this visual world. And let’s be patient with sighted people wrapping their heads around this new way of communicating, just as they have been (mostly) patient with us.

We’re all in this together. We’re all clumsy, and awkward, and out of our depth. Together.

Better Living Through Severed Shoestrings

“Money doesn’t grow on trees, you know,” played on repeat throughout my time in public school. I was better off than many blind students, since my school division rarely hesitated to fund what I needed, and my educational assistant’s skill far exceeded her salary. Despite this relative abundance, I was never permitted to forget how lucky I was to receive basic educational tools. Fellow classmates were forever losing or damaging their books and equipment, while I was reprimanded for so much as bending a binder. I was threatened with a $700 fine for misplacing one volume of a Braille book. If a piece of expensive equipment malfunctioned—usually because I had not received the most rudimentary lessons on how to use it—I was held solely responsible, my attempts to explain myself summarily dismissed. Almost nothing I used belonged to me, so a broken coil or missing stack of Braille paper was grounds for outright hysteria. In fact, my first panic attack was triggered by a problem with my school-issued laptop. It had been drilled into me by a few overzealous adults that I could either be a faultless steward of my assistive technology, or I could surrender the right to have any at all. Panic seemed warranted.

University was a welcome reprieve. Generous grants and scholarships covered all my equipment. There was an expectation that I’d take care of my technology to a reasonable extent, but no one was hanging over my shoulder, evaluating the way I carried my Braille display. Grant money wasn’t unlimited, so I still had to be cautious, and when something broke down, there was no guarantee I could afford to repair it. For those fortunate enough to be uninitiated, specialized technology seems to break down a lot.

Then, as if to cement this shoestring pattern, I started working in the nonprofit sector. Anyone who has worked in nonprofit organizations for any length of time knows that you can’t assume you’ll have reliable access to stamps and functional phone systems, let alone costly assistive devices and software. Funding is available for Albertan employers, but I had already developed the habit of accomplishing all tasks with bare-bones resources. Years of living on the disability shoestring meant I was a convenient employee, but not necessarily an optimal one. In the disability world, you often get what you pay for, and the nonprofit tendency to use no or low-cost alternatives to standard products spurred me to avoid asking for anything at all unless my job depended on it. My employer checked in periodically to make sure I didn’t need anything new, but I insisted I was just fine, thanks. Again and again, I chose the long, winding path to every goal—whether at work or in my personal life–because it meant conserving other people’s money and time. What could be more important than that?

Recently, I switched to a position in which employees are expected to make any reasonable request that will increase their productivity. Nothing is promised, but much is delivered, and my shoestring habits are neither lauded nor useful. Profligacy isn’t encouraged, but neither am I praised for taking hours to perform simple tasks just because I used a cheaper option, or refused to ask for help, or failed to request an accommodation. In my new environment, resources are plentiful, and I’ve had to do major soul-searching to become comfortable with that.

It has taken me years to pinpoint why I find the hard way so easy. The trouble with the shoestring lifestyle is that while it’s not enjoyable, it’s comforting. If no one can accuse you of being a drag on the system because of those dreaded “special needs” of yours, you can indulge in self-righteous piety. Doing everything the difficult but economical way is a bulwark against societal pressure to take as little from a harsh world as you can. I convinced myself I had to earn my right to work, which meant ensuring that no employer or disabled peer could view me as financially burdensome. Amid all my anxiety about costing too much or needing too much help, I forgot that employers are typically more attached to excellence and efficiency than economy. If I proved to be valuable and competent, employers would find ways to accommodate me. On the other hand, if I cost them next to nothing but lagged in terms of productivity, they’d be well within their rights to trade me in.

A lawyer friend said it best: “A good dose of get-sh*t-done is important, but time is money.” Cultivating an independent, innovative spirit is worthwhile, but it’s equally important to identify what you need, and have the guts to ask for it. Shoestrings make great security blankets, but when resources are within reach, it’s best to snip those strings. The severing exposes you to potential criticism, yes, and it means someone might conceivably make the case that you’re too costly to keep, sure …

But it also means you’ll do your best work, in good time, with minimal risk of burnout. What could be better for your work-life balance, your health, and your employer’s bottom line?

I’ll keep my ability to improvise and adapt. I’ll hang onto my talent for working under tight budgets and tighter deadlines. I’ll learn multiple ways of circumventing disability barriers, because the ideal environment will not always be there.

As for the scarcity-based, shoestring mentality? I think it’s time I let that go.

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?

“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.

5 Reasons Hogwarts Would Be A Terrible Idea (If you’re Blind)

Ah, Hogwarts. Harry potter fans worldwide would secretly love to receive an acceptance letter—and that includes grownups. A Hogwarts education would make my communications degree seem pretty dry in comparison. Who needs PR skills when you can modify someone’s memory after the latest publicity scandal? Who needs powers of persuasion when you can slip someone a love potion? (I’m known for my ethics. Ask anyone.)

Since we enjoy overthinking, Gregg and I put together a post that explores what it would be like to be a blind student at Hogwarts as we know it. As with most areas of life, blind people have to face the music: Hogwarts, as described in Rowling’s books, anyway, would be a nightmare. We’d soon be begging to go home to screen readers and staircases that don’t lead somewhere different every day. Speaking of which …

1. Accessibility would be a distant dream.

These days, blind people in developed countries take certain things for granted much of the time. In Hogwarts, though, most of those coping mechanisms would be quite out of reach, owing to the school’s negative effect on electricity and technology in general. Computers, the internet, cell phones, embossers and scanners would all be useless at Hogwarts, forcing blind students and their professors to find inventive ways around these limitations. We would likely be limited to braille, and would need an educational assistant who could transcribe our work and assignments for us. While sighted students could take a trip to the library in order to do research, we would have to get a considerable amount of help to find not only the books we wanted, but the materials within them.
(Can you imagine asking Madam Pinse to help you search through an entire shelf of books? I wouldn’t dare, personally.)

Classes themselves might also be tricky. Potions and Transfiguration often rely on colour as an indicator when a spell or potion has been done right. (Good luck asking Snape to help you with anything ever. Unless your last name is Malfoy, forget it.)
Divination relies very heavily on sight, since most of it seems to involve studying tea leaves and crystal balls. Astronomy might be a little easier, but stargazing without working eyes is out of the question. At higher levels, nonverbal spells which give some sort of visual signal when cast would be much harder to dodge if you weren’t able to see them coming. Courses like Ancient Runes and Arithmancy might present unique challenges, since braille signs would have to be invented for specific symbols. Overall, being a blind witch or wizard would pose significant accessibility problems which, without proper preparation, would certainly make the lives of students and staff much more complicated.
(Uh, Professor? Where is my accommodation letter?)

2. Life would be a game of dodgeball

Hogwarts offers many forms of potential misery for a blind student. Objects always seem to be dropping or flying through the air, and not all of them are as soft as a copy of the Daily Prophet. Charms class is notorious for this, as students are often asked to transport objects from one point to another. The high number of inexperienced witches and wizards around us increases the already high chance of being hit by errant and unintended projectiles. And then there are the owls. Imagine sitting peacefully at breakfast, toast in hand, only to hear a thundering mass of birds descending from on high, most of them bearing objects that they are all too willing to bomb you with as they get close. Speaking for myself, this is not my idea of a good start to the day.
(Oh, look! There’s an owl in my milk jug again!”)

Take orientation and mobility, for instance. Can you imagine how difficult it would be to try and map routes to your classes when hallways and staircases aren’t always in the same place? And speaking of staircases, how about vanishing steps? Every ascent or descent would be an exercise in both patience and luck, as we hoped and prayed that we didn’t find ourselves trapped when a solid stair suddenly disappeared beneath one foot. Many of these trials might be alleviated by helpful students and professors, of course…but what of the portraits? The halls of Hogwarts are full of paintings all too willing to lend their voices to the chaos, and it would be easy to end up in even worse trouble by following one well-meant bit of advice or another.
(Um, thanks, Sir Cadogan…but I think I’ll just follow my heart.)

3. Get ready for the practical jokes.

We all know how much students enjoy messing with each other via hexes, jinxes, and bewitched sweets that make you turn into a canary. Imagine making yourself even more of a target simply by revealing that you’re blind. The slytherins would have a field day and, let’s be honest, Fred and George might, too. We’d like to think the twins have a sense of morality, but who really knows?

We can’t see spells coming or react to them very quickly. Even if we are expecting them, we’d have to remain in a state of constant vigilance (see what I did there?) at all times. School is stressful enough without having to hide in the common room under a pile of books we can’t even read. Madam Pomfrey would get to know us in a real hurry.

Who says all the interference would come from students? We wouldn’t put it past Snape to slip something in our drinks if he suspected we’d been stealing his bezoars again. At Hogwarts, nothing is sacred.

4. Say hello to mass marginalization.

Blind people are marginalized enough in our own world, and we don’t imagine the wizarding world would be any kinder to us. Forget (mostly) harmless practical jokes: we might be facing total exclusion from significant portions of Hogwarts culture. Picture it: the Great Hall is buzzing with excitement. A quidditch match—the most important of the season—is about to begin. We go outside to the pitch, and try to follow the game using the patchy commentary Rowling’s characters tend to provide. We’d have access to tiny snatches of what’s actually happening, but pick up most of our cues from crowd reaction. This is not unlike other sports, but with other sports you have professional commentators. Oh yeah, and forget actually playing quiditch. Even if we could devise a way to play, I don’t think anyone would be willing to let us try.
(Oh, well, we would…but the paperwork, you know…)

I can’t even guarantee that Dumbledore would step in. He’s not exactly known for being on the ball. He’s a great man, we know, we know…but pensive and constantly-absorbed would be putting it mildly.

Then, there’s the darker side of the coin. The wizarding world is as filled with bigotry and hatred as our own, and since the community is so insular, it’s even worse. We already know how shabbily “half breeds” are treated; even gorgeous, powerful centaurs aren’t immune to ministry prejudice and control. Imagine, then, how blind people might be treated? At best, we’ll be “taken care of”, and at worst, we’ll be the recipients of unspeakable hatred. I don’t think Voldemort and his band of merry Death Eaters would object to polishing us off for the fun of it.
(Where am I? Where am I? C’mon, guess! How many fingers am I holding up? Crucio!)
This brings us to our next point…

5. We would always be a liability.

Time and time again, we’re told how, in the heat of battle, it is difficult to dodge all the deadly curses flying about. As we’ve already mentioned, being endangered by flying things would be one of the most significant issues exacerbated by blindness. As Rowling has already shown us, Hogwarts is not a perfect stronghold. During the multiple battles that have taken place there, we would not have stood a chance. Even if we were capable of avoiding stray spells long enough to duel with someone, I doubt many wizards would allow things to get that far. Dumbledore would hide us behind reanimated statues, and the rest would banish us to dark corners where we won’t be hurt. Of course, what this translates to is “You can’t hold your own, and you’re a liability. I don’t want to have to worry about you while I’m fighting the good fight.”

The general assumption that blind people can’t defend ourselves is completely bogus, though there are some undeniable disadvantages that make us prime targets. However, all the self-defence skills in the world won’t save you from a ricocheting killing curse.
(On your left! Your left! Sorry—my le–Oops…)

It’s pretty depressing to be “in the way” all the time, and that would only get worse at Hogwarts, where people are in a lot more peril than any “normal” kid would ever be.

But wait—it’s not all bad!

With all the things that might go badly for a blind Hogwarts student, we would be remiss if we didn’t mention a few potential perks. Whether or not they act as suitable compensation for all the headache, though, is up for debate.

You might be immune to the basilisk’s stare. I say “might” because we frankly don’t know enough about how exactly that petrification spell works. And nothing stops the beast from biting you just because you can’t see it, so this is a mixed blessing.

Invisibility cloaks aren’t quite what they’re cracked up to be. In the novels, when Harry and friends don the cloak, it’s as if they disappear completely. People rarely hear, smell or sense them as they pass. Being blind means that we’re likely to be more aware of what our other senses are telling us; as such, it would be harder to slip past us while wearing an invisibility cloak.

The Mirror of Erised would be powerless against us. This device is supposed to show you your greatest desire when you look into it, but without the ability to see, the mirror would be nothing more than a sheet of glass in a peculiar frame.

So, friends all, don’t despair if you don’t receive your Hogwarts letter. You can probably put your time to better use anyway. For example, you could go out into the community and be a general inspiration! Wouldn’t that be nice? Who needs witchcraft and wizardry, anyway? Not us!

Accommodation with a Side of Guilt, Please

This evening, I went out to dinner with some friends. I ordered a dish I’ve eaten many times (a salad) only to find that they’ve begun presenting it in a new way: the dressing was in a small cup on the edge of the platter, rather than atop the food as it usually is. I froze, slightly embarrassed. I’ve always had trouble dressing my salad if it’s in a cup. Squeeze bottles? No problem. These give me a certain degree of control. Cups, however, are a different story. (Disclaimer: some blind people have no issue with these whatsoever.) I was just about to ask someone at my table to help when our extremely-attentive server materialized at my elbow:
“Do you want me to take this back and dress it for you?”
“Um…no, it’s okay…it’s just a bit awkward—“
“I totally understand. Don’t worry about it. I’ll be right back.”
Away went my plate. The server appeared several minutes later, saying “Here’s your salad. We have a special rule here where each time food is sent back for any reason, we have to actually make a new dish. So, we just made you a new salad and dressed it for you.”
I was stunned. I had just inadvertently wasted an entire plate of food so that someone could put dressing on top of my salad for me? Forget being slightly embarrassed: I was mortified and, I confess, a little ashamed. While the server reassured me that it was all okay, I silently asked the powers that be to disappear me immediately. They did not oblige.

I’m used to being “accommodated”. Indeed, I often expect it: when I enroll in university classes, each of my instructors is given an accommodation letter, which describes the accommodations I’ll need to participate fully in the classroom. (If I sound like a handbook, that’s because I wrote one—no, really!) I also expect workplaces to make (reasonable) accommodations to the work environment. This is something I’ve been encouraged to view as normal and acceptable. As is typical for me, I have felt heaps of unnecessary guilt over accommodations, even when they are deemed “reasonable”. Once, in ninth grade, my science teacher got together with a few others on staff and made me a periodic table, so I wouldn’t have to use the rather inadequate one in my textbook. My junior high Industrial Arts teacher went out of his way to make sure I could try out all the same equipment everyone else could. He even positioned the end of a nail gun while I fired, showing a remarkable lack of concern for his fingers. (If you’re reading this, I want to thank you. I’ll never forget that one.)

When people go above and beyond the call of duty for me, I feel grateful (healthy) and horribly guilty (unhealthy). Instead of simply thanking people and getting on with things, I waste time and emotional resources worrying about how undeserving or inconvenient or high-maintenance I’m being. While the person who is helping me is busy doing me a favour, I’m busy coming up with all the reasons I shouldn’t be accepting it. Even when I do accept it, as I did with that salad, the shame and humiliation will plague me for days. Yes, you read that correctly: days. This particular incident was so awkward that I’m amazed I didn’t start crying right there at the table; goodness knows I wanted to.

As far as the server was concerned, she was helping a gal out, no more no less. I have no idea what the kitchen staff thought, though I wouldn’t be surprised if they were about a dozen different kinds of exasperated. As far as I was concerned, I’d manage to waste food, fill my server’s time with running back and forth (in a very busy restaurant, I might add) and make a fool of myself all in about five minutes. I’m cringing as I write this, but the more I think about it, the more I realize it needs to be discussed. There are probably a lot of people out there who have felt how I’m feeling right now.

I’m trying to be okay with being accommodated. I’m trying to be at peace with accepting help, and depending on others, and even letting people do me favours now and then. Could I have dressed the damn thing myself? Of course. Would it have been less messy and awkward to have someone else do it? Absolutely. Did I force anyone to do it for me? No. Am I still going to feel awful about it for days to come? Yup.

But should I feel guilty? Most people seem to think I shouldn’t. Accommodations are there for a reason, and in many cases they are universal enough to be made into policy and/or law. But just because it’s not in a handbook or policy statement doesn’t mean it can’t and shouldn’t be done. While imposing unreasonable accommodations on people at work, school, and elsewhere isn’t going to further the cause, it shouldn’t mean that any random act of kindness ought to be rejected.

Should we make a habit of letting people do things for us, especially when we’re capable of doing them ourselves? If you know me at all, then you know I’d never suggest such a thing. However, this does mean that we should be comfortable with accepting what people want to give us now and then. If it’s not a sin to let someone carry your heavy bag, or hold open a door, or grab you a drink (all things sighted people let others do for them on a regular basis) then why not let someone offer kindness if they really, really want to?

I’m learning, guys. I’m learning. But for now…I think I’ll go and have that cry.