Guest Post: When Your Advocacy Looks More Like Erasure

It’s challenging to communicate the seriousness of the unfair treatment service dog handlers encounter on a regular basis. I’m not a handler, but all I have to do is spend half an hour with one of my handler friends to get a sense of how frustrating it really is to exist in the world when you have a service dog. Watching service dog users interact with the disrespectful public sets my teeth on edge, and I have no idea how they put up with it as gracefully as they do.

It’s tempting, then, for handlers and for me, to use racial discrimination as a direct comparison. I’ve made such comparisons on this very blog, without examining the deeper implications of that choice. Today, a guest poster, who has chosen to remain nameless, challenges me, as well as her fellow service dog handlers, to take a closer look at these comparisons. Compelling as they are, she invites us to consider a more inclusive path forward. I, for one, will be doing a lot of rethinking.


From time to time, controversy rears its ugly head in my network of service dog handlers. A viral news story about a person of colour being mistreated sweeps social media, and inevitably, service dog handlers draw direct comparisons to their own lives. They equate discrimination they have faced due to the presence of their dogs to that faced by people of colour and other marginalized groups. It’s usually sparked by genuine frustration as handlers try to help the public understand why access refusals are problematic, but the resulting conversations usually lack nuance and meaningful intersectionality. Traditionally, I have remained silent. I have sat on the sidelines, scrolling through the comments, feeling increasingly uncomfortable. I’ve been unwilling to speak out, not wanting to risk backlash from those propagating this comparison. After the most recent surge of posts like this, I find I no longer want to be silent.

Before I go any further, I will admit I face discrimination because of my gender, my disability, and, yes, because of my service dog. However, I am white, and I have the privilege of never experiencing discrimination or oppression due to my race. Thus, I will be describing my experiences as a white handler, and I am calling out my peers, because without exception, the handlers I’ve seen conflating their experiences with those of people of colour are white.

As I said above, I am not a stranger to discrimination due to my dog. I have been refused access to stores and restaurants, been turned away from taxis, and even been denied employment opportunities. Is this humiliating? Yes. Does this harm me? Yes. Is this highly illegal, and should violators of the laws be punished? Yes. Does this mean my accessibility issues are on the same level as discrimination that’s racially-motivated?

No.

On the surface, you can definitely identify similarities. It’s easy to compare service dog discrimination with racial prejudice, especially if you want a familiar framework to help nondisabled people understand it. Denial of access to services and employment is par for the course for people of colour, LGBTQ folks, people with disabilities, etc. When you dig further down, however, you quickly encounter the pivotal difference which, at least in my mind, reveals a false equivalency. That essential difference is freedom of choice.

Using a service dog is a conscious choice one makes with the full awareness that discrimination probably will occur at some point. The service dog programs I’ve attended had info sessions about what to do if you are denied access to a public place or public transit. I was warned that I would be placed in situations where I would have to argue for my rights. I still went ahead with the decision to get multiple service dogs over the years, because I weighed the pros and cons, and still found that a dog was the right choice for me, even if I would occasionally argue with members of the public who are unaware of relevant laws. That is an informed decision I made, and continue to make, regardless of how I’m treated. In the case of PoC, the barriers they deal with are not based on choice, but on fundamental characteristics they did not ask for and cannot change. Make no mistake: I’m not in any way minimizing the importance of service dogs. Service dogs improve the lives of many, and are typically considered medical equipment. I would never choose to be without mine for any length of time, and no one should ask it of me. But that’s a far cry from having a skin colour that automatically sets me up for mistreatment.

Now, I’m not at all saying discrimination against service dog handlers should be ignored just because it is based on a choice we made, but there exists a difference between the two situations that cannot be overlooked. Discrimination based on race and discrimination based on the presence of a service dog are both reprehensible, but they should not be conflated. When a business owner denies me access because of my guide dog, it often involves fear of the dog, concern that my dog may make a mess and/or violate health codes, concern for allergies, and/or a lack of awareness of the laws that grant my service dog access to any public place. When PoC are denied access, it is due to a fundamental mistrust, disgust, hatred, and/or fear of them as people. I may be asked to leave because a business owner is afraid that my dog will shed on their merchandise, while  a PoC may be followed around the store by staff because they are afraid they will steal something. Put another way, I am mistreated because I am accompanied by an animal; PoC are mistreated because some people view them as animals.

Another telling difference is the response by authorities to the discriminatory act. If a business owner threatens to call the police because of my dog, I generally invite them to go ahead. Most likely, the police will be on my side. They will inform the business owner that I am legally permitted to have my dog with me, and if the business owner doesn’t comply, they risk a fine. In fact, I have my city’s police department’s phone number in my contacts, and when I meet a belligerent business owner, I actually offer to call the police for them. While there have been a couple of occasions where the police have also been unaware of the laws they have sworn to uphold and have told me that I must leave with my dog, that is the worst thing that can happen to me. I leave the business and promise myself that I will never patronize it again. Maybe, if I have the mental fortitude, I send a letter to the head office of the company, or to the media, to lodge a complaint, which may net me an official apology if I’m lucky.

This is not the story for many PoC. I am sure most of you have seen news stories regarding business owners calling the police on PoC who were quietly minding their own business in public. In many of these cases, a huge police presence arrives, the PoC is arrested, and physical harm can sometimes follow. Many PoC have spoken out saying that they fear and distrust the police, with good reason. As a white person, I can freely assume the police are my allies. PoC don’t have that vital privilege.

Those who conflate these two types of discrimination frequently justify it by claiming it’s the only way to call public and media attention to the plight of service dog handlers. I have seen several social media posts in which a white service dog user points to a news story where a PoC was ejected from a store or denied access to an Airbnb, urging their followers to replace the PoC in the story with a service dog handler. While it is true that discrimination against guide dog users rarely makes the news, it is also true that the overwhelming majority of discriminatory acts against PoC fails to reach the media, too. I do believe that society would benefit from a more robust media that fairly covers issues relevant to PoC and people with disabilities, but I do not believe that erasing the experiences of the PoC for the benefit of service dog users is the right way to achieve that aim. Both issues need to be in the spotlight, and even though people with disabilities often feel justifiably ignored, I don’t believe white handlers should be pushing other marginalized people aside to draw attention to our own issues.

What about empathy, you ask? What about common ground? Empathizing is important, and we are absolutely free to use our experiences as service dog handlers to show empathy for other marginalized groups. I have personally felt the humiliation of being ejected from a public place, and I know firsthand that it feels terrible. That being said, I wouldn’t use my ability to empathize as a method of erasure, especially when the discrimination caused by my dog has a much different origin, and far less harmful results. I can see the ways in which my experiences relate to what a PoC goes through, but I’d never state the two are interchangeable.

Fellow white handlers, we can and should do better. We should call out discrimination when we see it because we know it is wrong, and we know that it hurts. We should stand together and demand equal rights for everyone, not just the groups we are a part of. And we should work against the instinct to erase or distract from the voices of other groups to amplify our own. There is plenty of room out there for all our grievances without denying anyone else the attention theirs deserve.

Advertisements

“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.

In Defence Of “Internet” Friendship

“So, where did you meet your friend?”

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

“Oh…so not, like, a friend friend.”

“A friend friend?”

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

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

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

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

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

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

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

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

The Sanctity Of Vision

There appears to be consensus among humankind that blindness is an objectively undesirable fate. I’d tend to agree, since while I live a full, satisfying life with blindness, it’s not a circumstance I’d necessarily have chosen for myself if someone had given me a say. I grew up in the shadow of pity, outdated ideas, and low expectations. More than once, strangers have insisted they’d be completely incapacitated if they lost their sight, even temporarily.
Not until adulthood did I comprehend society’s primal aversion to blindness. It goes beyond the ineffable fear of being disabled, straying into a territory governed more by bone-deep horror than reasonable discomfort. Of course most people wouldn’t welcome the thought of becoming disabled. Sight is a primary source for sensory input, so people’s instinctive panic when contemplating blindness, even as an abstract concept, falls within the lines of what I’d consider logical.
What I struggle to understand is the extent to which so many people, even medical professionals, avoid blindness at all costs. After a few people had expressed, to my face, the opinion that they’d rather resort to suicide than live without sight, I began to realize that vision and quality of life are inextricably linked in ways I, a person who has been visually impaired from birth, cannot possibly imagine. As it turns out, while I’m out there enjoying my life, people I pass on the street are thinking of me as someone who isn’t really living at all.
The idea shed its abstract quality when I met my dear friend Alicia. As an infant, Alicia had her eyes removed to save her from an aggressive cancer that, if left unchecked, is often fatal. Eye removal, while drastic, seems like the best possible choice—maybe the only choice—when confronted with the possibility of death, but not everyone saw it that way. Alicia’s journey through cancer and blindness has taught me that far more than the sanctity of life, the sanctity of vision is king.
This is her powerful story, in her own words. I hope you will read it, put aside primitive assumptions, and re-evaluate the way you perceive those of us who don’t have vision but who do have life, in all its richness.


Off and on while I was growing up, I heard the claim that society fears blindness even more than cancer. I think the first time I heard this phrase, it was based on some study that had been done–a national survey of some kind, but I was young enough at the time that I didn’t inquire into insignificant details such as sources or methodologies. My youth was only part of the reason I disregarded the information, though. Just as strong was the fact that I found this statement unbelievable. How could people fear blindness, something which can be lived with, over cancer, something that can so easily take one’s life away? Impossible…Or so I thought.
My rude awakening has come in various forms over the years. The first incident occurred in 2002. I had been considering having a tubal ligation, because I already knew I did not want children. I certainly did not want to pass retinoblastoma, the cancer I was born with, on to a child. At an appointment with my ocularist, he told me about a baby undergoing treatment for this same cancer. The doctors knew that the amounts of radiation being given were likely causing brain damage to this child, but both they and the parents refused to consider the option of removing the child’s eyes. Risking brain damage, not to mention leaving cancer in an infant’s body, all because the doctors and parents feared blindness so much? I was devastated. I cried for several hours, and made up my mind that very day that I would have my tubes tied as soon as possible. There was no way I was having any child of mine treated in a medical system that valued vision over life itself. I don’t think I realized until that day the tremendous service my parents had done for me in making the choice they did to have both of my eyes removed as an infant rather than leave cancer in my body. My respect and gratitude to them for that choice increased by leaps and bounds that day. Only then did I learn that they had actually had to push my medical team to do this. I always thought it had been the recommended option, because it was the one that made sense and posed the least risk to my life. Apparently it was not, and my parents had to lay down the law as my guardians for this to be done.
After my tubal ligation, this issue moved to the back of my mind until 2015, when I attended a mental health First Aid training session. The trainees were split into groups. Each group was given a list of traumatic events that a person might experience in life, and asked to rank them from least to most catastrophic. Two of the items on this list included being diagnosed with cancer, and vision loss. As the results came in, every single group ranked vision loss as the most catastrophic event a person could experience, with cancer diagnosis placed several items down the list. Once again I was shocked, especially given that many of the people in the room knew me personally. Did they truly not understand that blindness could be lived with, and lived with well? Did they really pity me that much, or believe my life was that terrible? I asked to address the room, and made my case for why I truly did not understand these rankings. I hope I gave people some food for thought, but I’ll never know for sure.
People’s tendency to value vision over life has come to my attention yet a third time in the last few weeks. A dear friend of mine has been diagnosed with a different kind of cancer of the eye, ocular melanoma. The tumor, which is particularly large, rests behind and within her eye. Thankfully it has not yet metastasized, but if it were to do so, the most common place for this particular cancer to spread is the liver. As most people know, short of Divine intervention, once it reaches that organ, a person’s days are numbered. The options for my friend were to radiate the tumor and attempt to save the eye, or to have both the eye and the cancer removed in one surgery, with follow-up appointments over the years to make sure she remains cancer-free. She spoke with two nationally renowned cancer hospitals, and got two very different opinions. One cancer hospital said they would outright refuse to remove the eye, considering this option medical malpractice. Again, I was shocked, though by this time, I don’t know why. It wasn’t like this information was new to me. Removing cancer from a person’s body is medical malpractice, but leaving it inside the body in order to keep an eye is not? The other cancer hospital was forthright with my friend regarding the risks and side effects of radiation, even though it has advanced in precision and effectiveness over the years. This hospital’s staff was honest about the fact that even with this option, there is only a 20 to 30 percent chance of saving the eye. After much thought and prayer, my friend felt her best option is to have the eye, and thus the cancer, removed. Sadly, she has had to push her medical team to accept her decision. At least she is an adult, and is able to advocate for herself and choose what should be done to her body. Children born with cancer do not have this choice, and must rely on the discretion of a medical community that tells people that blindness is a much worse fate than cancer and its treatment.
This philosophy continues to stagger and upset me today as much as it did when I first became aware of it 15 years ago. What is it about our society that makes people fear blindness over the potential loss of life? What can we as people who are blind do to change these perceptions? Is there, in fact, anything we can do? Will this philosophy ever change? These questions will likely remain unanswerable. For my part, I can only do what is within my sphere of influence. In the case of the friend mentioned above, my example has been part of what helped her realize that vision loss could in fact be lived with, and that she can and will adapt. If I can help one person know this, then perhaps my own experiences are not in vain. I just wish there were more I could do to show the medical community this truth. Do I wish blindness on a person? Absolutely not. There are days when it is extremely hard to deal with, when I curse the lack of accessibility, or the transportation issues it causes. There are days I am sad not to see colours, or pick up a print book and read it. However, at least I am alive to have these problems.
All things considered, I would much rather have life, with the inconveniences of blindness, than no life at all.

“Wait…You Work Here?”

About a month ago, I was charged with covering reception at my workplace. We were severely short-staffed that day, but in small non-profits, everyone pitches in. Our clients are used to seeing unfamiliar staff members covering the desk, and it’s common enough that it never raises eyebrows. When I sat behind the desk, however, everything changed.
Instead of asking me questions about how to send a fax or print in colour, clients asked, often openly and a little confusedly, “Do you…work here?” Many of them avoided the reception desk altogether, knowingly violating protocol and striding past the desk without so much as a by-your-leave. They’d quiz other coworkers milling about in the reception area, even when those coworkers encouraged clients to speak to me directly. At times when I managed to engage with them and ask them what they needed, they expressed a preference for the intern who had been with us less than a month and knew maybe a tenth of what I did about how things are done. Although the intern was nervous and visibly uncomfortable, clients chose to wait and interact with her rather than dealing with a long-term staff member who had a visible disability. After only one short hour in reception, I realized that having worked at this non-profit for almost a year, sitting confidently behind the desk, asking people directly if I could assist them, and being dressed as professionally as anyone else working there—none of it mattered. People just assumed I was either incompetent or not an employee at all. (I don’t know whether they believe my workplace routinely allows non-employees to sit behind the desk for fun. I didn’t ask.)
In a move that was a little twisted even by the cruel universe’s usual standards, I was stopped in my apartment building a few days later by a fellow tenant I’d never spoken to before. I was clearly in a rush, walking briskly, and doing my best to ensure I wouldn’t miss my ride to work. Ignoring every signal I was blasting frantically to the world at large, this inquisitive woman started to pepper me with questions.
“Hi. Where are you going today? I see you leave here most days. Always wondered where you go.”
“I’m heading to work.”
“You work?!”
“Yes, yes I do.”
“Like, every day?”
“Five days a week.”
“Where?”
“At a small non-profit.”
“Oh! Which one?”
The interrogation probably would have continued, but I was able to extricate myself by pleading lateness and managed to escape before snapping at her with much more irritation than she’d have deserved. It’s not a crime to ask questions, and I’m not one of those who will eviscerate someone for daring to try it, but having strangers ask you where you go every day and the exact location of your workplace seems a little dodgy, disability or no.
As with almost every other disappointing situation I’ve experienced because of disability, I soon realized I was far from alone. While discussing the matter with others, I heard several accounts of blind people being mistaken for non-employees who had strayed into forbidden areas, or who were merely assumed incapable on sight. Sighted people are used to seeing us sitting at a piano or acting in feel-good, promotional videos, but a blind person sitting at a desk or standing behind a counter seems to be a bit more of a leap for them. Fellow blogger Blindbeader has been stopped twice now at her new workplace, where she was warned by strangers that she was going the wrong way and was trying to enter a secure area. Only when she flashed her security badge and explained she was an employee did the people in question re-evaluate their assumptions. Apparently, even a professionally-dressed, confident-looking blind person looks lost and out of place in a work environment, at least to some people out there.
This type of unconscious discrimination can have more serious consequences than mild annoyance and inconvenience. While working as an intake assistant at CNIB, I conducted most of my consultations with clients by phone, so they readily listened to and respected my advice without question. When they’d walk into my office and meet me for the first time, though, some of them, even people who were going blind themselves, would do an astonished double-take, hard pressed to believe the helpful, knowledgeable woman they’d spoken to on the phone was blind. My partner, who has a moderate eye condition that is sometimes visible, was frequently discriminated against at work in retail and food service fields, despite his capabilities. While working for a fast food restaurant, coworkers were quick to blame any mistakes on “the blind guy,” and management was a little too quick to believe them. When he worked at a computer repair shop, customers would request to work with a different technician, or complain about him to his coworkers, because they thought it glaringly inappropriate for a person with even mild vision issues to be employed there. Their complaints are perplexing to me, since his vision issues are minor enough that he doesn’t usually use accessible devices and never uses mobility aids. He’ll never drive, it’s true, but he can certainly repair your computer and even read your screen without help. To this day, reliving these experiences makes him uncomfortable and anxious, and it’s easy enough to understand why. Hard as we work to convince interviewers and supervisors we deserve to work alongside everyone else, we still have to face the hurdles put in place by public and peer perceptions.
I didn’t realize how prevalent this casual discrimination actually was until I entered the workforce at age eighteen. At one point, while trying to comfort a distraught mother whose teenage daughter had just gone blind, I found myself explaining to her that, no, her daughter’s life was not irrevocably ruined. Yes, she’d be able to go to school, and have a career, and be successful. In a moment of weakness for which I don’t blame her one bit, she burst out: “How would you know? You’re just saying that!”
“Actually, Ma’am,” I said as gently as I could, “I’m blind, too. I’m getting a degree, and I have good career prospects. Many of my blind friends are very successful in their fields. It’ll be hard, no question, but your daughter’s going to be okay.”
So, if there are those out there who honestly believe blind people are destined for lives spent at home being cared for by our unfortunate families, and cannot aspire to anything higher, it makes sense that they’d react oddly when confronted with blind professionals. All manner of superficial attributes make people seem more or less trustworthy and credible, right down to appearance and voice. Why, then, should it be shocking that a visible disability would, however unjustly, decrease a person’s credibility in a stranger’s eyes? It’s not fair, and it needs to be combatted, but it does make a kind of sense. At least, it’s no less illogical than thinking tall, deep-voiced people are more credible than short, higher-voiced people with the same qualifications and credentials. The world is a vastly illogical place.
My solution to this issue mirrors the one I default to in so many other cases: education, education, education. The more blind professionals are seen out in the world, the more accustomed to us society will become. People’s minds do change, and I know a few who, since having met me, have altered their perspectives on a great many things. No more would they stop a blind person in a hallway and automatically presume they don’t belong there. No longer would they avoid seeking help from one of us if they found us behind an information desk, or repairing their computers in a shop, or cooking their food in a restaurant.
As usual, the way is long, and slow, and sometimes painful—but it is, I think, the only way we have.

The Freedom To Read

On February 26, Canadians will begin celebrating Freedom to Read Week, which reminds us of the danger of censorship and the importance of intellectual liberty for everyone. It’s a time to reflect on the harm done by banning books and restricting access to controversial ideas. I’m a big fan of this occasion, because I routinely seek out viewpoints that make me uncomfortable. Forcing myself to ask hard questions can be unpleasant, but frequent soul-searching helps me keep my mind open and my opinions balanced.
As dear as this cause is to my heart, I’ve found that the phrase “freedom to read” means something different to me—something deeply personal and specific to my disability. You see, much of my childhood and young adulthood was made less fulfilling because I did not have total freedom to read. Braille books were difficult to come by, especially rare ones, and audio books used to be prohibitively expensive. Later, when a mix of talking books and access to the internet helped me nourish the hungry bookworm that has always lived inside me, I realized just how difficult it had been to live in a world where I missed out on so much while my peers dealt with no such limitations. Imagine waltzing into a library or bookstore and just…reading, whatever you want, whenever you want! This is a privilege most able people will never have to think twice about; it’s automatic and taken for granted by the majority of people. For me, though, it was a novel concept.
I couldn’t experience the pleasure of binge-reading; my supply of literature was far too inconsistent for that. I often curbed my urge to read everything in sight, knowing that if I didn’t ration my reading material, I’d regret it later. By the time I was in ninth grade, I’d literally read every book the nearest resource centre had to offer, which I found devastating. The CNIB library finally saved me, but until then I felt intense deprivation.
Reading, more than any other activity, gives me indescribable joy. Books are my refuge, sort of like a friend who will never desert me. Reading is how I relax. It’s how I learn. It’s how I entertain myself and expand my horizons. It’s an invaluable educational tool, because I get much less out of videos and am quite introverted. It’s my chief source of comfort and solace. Whenever life gets a little too complicated, I retreat to my books, though I read almost as much when times are good. I feel giddy at the mere thought of finding someone new to talk books with. In short, I cannot imagine a life without reading.
There are other times when my freedom to read is compromised. I can’t usually read signs, billboards, posters and other visual materials. Taking photos of objects using specialized software is one of the only ways to identify labels and read instructions (though instructions are commonly posted online now, which helps an immeasurable amount). If my portable scanner isn’t handy, I sometimes need documents in hard copy to be read aloud to me. I can’t normally read paperwork I’m supposed to fill out, meaning strangers are privy to sensitive information and must spend time they don’t have assisting me. I can’t use most debit machines independently. The list goes on.
In this, as in so many other situations, the internet has contributed to a more positive reading experience. I can binge-read to my heart’s content. I can be very selective about what I choose to read. I have access to almost all reading material in existence, whether it’s rare or common. For the most part, things are next door to perfect.
I want everyone to know how vital it is that people with disabilities be allowed to read as freely as they please. They have the right to be exposed to new ideas and a variety of stories, just like able people. The hardest part about being a very young child was my inability to read. Waiting around for a grownup to take the time was excruciating, and even now, when I have to be read to, I feel like a child. I don’t want future blind people to be treated like children. I never want them to be compelled to read books they don’t enjoy because there are no other options. I am passionate about literacy, and the right of every person around the world to benefit from it. (This is why I become incandescent with rage whenever people suggest that braille has lost its relevance.) Literacy was my ticket to an equal education, and it is the bread and butter of my career. Navigating an educational system that believed I was “lucky to go to school at all” could only be accomplished by proving I was a good student, for which reading was key.
If we can all have the freedom to read, I think the world will be a much better place.

Inclusion For All! (Unless You’re Disabled)

Yesterday, I went through a fascinating but painful experience on Twitter. A very popular activist posted an important piece of information about the women’s march, saying she wanted it to reach as many people as possible and encouraging people to share far and wide. As it turns out, these were pretty words: while she did host a plain-text version of the information on her website, the tweet contained an inaccessible image with the text inside. This makes it impossible for screen readers to interpret the contents of the image, leaving out anyone with too little vision to read the message without sighted help. What is more, this woman placed a URL to the accessible version inside the inaccessible image, completely defeating the purpose of including it at all!
Wanting to make the information easier to access, another disability activist asked that the original poster tweet the URl on its own, and stressed the importance of accommodating screen readers, particularly since the tweet was meant to be available to everyone. If you want something shared widely, then including as many people as possible makes sense.
I joined the conversation (I’m a glutton for punishment), pointing out that Twitter has a handy alt text feature that makes it possible and easy to describe images. This feature would have been perfect for making sure the URL was readable for everyone, including blind screen reader users. I did not expect immediate action; I didn’t even expect a response at all. I just wanted to raise awareness about an option that is often overlooked and that would save people so much time and effort.
What did I get for my trouble? Well, nothing encouraging. Two of this activist’s followers jumped into my Twitter mentions to tell me the following.
• I had no right to “harass” someone who is doing her best.
• I was devaluing the tireless, exhausting work she was doing.
• I should go find something “real” to complain about.
• The only reason I was speaking up was that I was “bored with my life” and had nothing better to do. (Yes, because a full-time job, a social life, a relationship, and a budding freelance career mean I’m ever so bored and useless. I adore being judged based on nothing at all.)
• I should stop attacking people on Twitter.

Let’s break this down. A person (whose followers presumably agree with her) professes commitment to inclusiveness. Intersectionality, a buzzword many on the far left are fond of using, only applies to some groups. Disability is not included in that group, which is typical of a lot of feminist, left-wing activism; we’re often invisible to the loudest, proudest voices. Since I am disabled, I must be a bored, unproductive person. Asking for access is considered harassment by default, even when it’s a fairly polite, solitary tweet devoid of name-calling and anger. My concerns aren’t “real” or meaningful. Inclusion doesn’t include me, or other disabled people, and sharing far and wide means restricting your audience, even after you’re told how to remedy the issue. Finally, harassment doesn’t go both ways: tearing a stranger to pieces and continuing to tweet them after I’ve said I’m done with the conversation is acceptable, but sending one informational tweet is not.
I hate hypocrisy, and it’s inexpressibly devastating to come across it in the very communities that are supposed to support and include minorities. Why is disability so often absent from these people’s minds, and why, when it’s brought to their attention, is it so callously and vehemently dismissed? Why don’t we count?
I try to be patient with people. I try not to live a life of constant rage and victimhood. I realize that baby steps are par for the course and our rights and humanity won’t be fully recognized overnight. Education is vital and not every activist should be expected to have intimate knowledge of what we need right off the bat.
You would think, however, that once they’re enlightened, they’d act on what they have learned. Many of them do; later in the day, another Twitter user I approached apologized and was more than happy to make changes to her inaccessible tweets. Her warmth, sincerity, and complete lack of defensiveness were exactly what I needed after such a disappointing encounter.
I can put this down as one unfortunate incident and move on, and I intend to do just that. Before putting it behind me, though, I feel bound to tell people about my experience, and explain why that never should have been allowed to happen. Even among supposedly inclusive circles, I was treated like an annoyance who should just go away and stop complaining already. These people have “real” work to do. Can’t I leave them to do it?
This is not okay. You cannot and should not be allowed to get away with cherry-picking which minorities to support. You should not get to decide who is worthy and who is not. We’re not perfect, and sometimes we are guilty of cutting people down for honest mistakes. Despite this, I will continue to hold inclusive communities accountable for their refusal to acknowledge and stand with us. (Predictably enough, the activist I tweeted did not back me up or tell her followers to stop.)
In the meantime, I’m going to appreciate and uplift those who are willing to listen and act. The world isn’t all bad, and I can’t let myself drown in a sea of rage-fuel that really isn’t personal. I know I’m not useless. I know that my access requests are legitimate. I know I’m worthy of respect. I’ll just have to wait patiently for everyone to clue in, I suppose.
Now, excuse me while I get back to my productive, useful life.