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.

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Counting My Spoons: A Life Lived in Pain

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

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

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

Usually.

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

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

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

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

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

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

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

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

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

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

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

But by God, we’re trying.

 

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

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

When It Happens To You…

It happened on a bus. I was sitting near my boyfriend, who is not fully sighted but whose vision loss is not noticeable to the average passers-by. An older woman began talking to him, and my mind drifted a little. I was jolted back to earth, though, when I heard her say, quite sweetly, that it was “so nice of [him]to take care of [me].”
There it was.
I knew it would happen sometime, I really did. I’d heard so many stories from other blind people who had sighted partners. I’ve commiserated with them, thinking I knew how it felt because people had made abstract statements of that kind to me. I’ve basically heard it all: you need a husband so he can take care of you; you can’t raise kids or manage daily life without a man; you need to choose a sighted partner so he can keep you safe–and on and on.
It turns out that I was wrong about one crucial element: an abstract statement, no matter how offensive, is far less upsetting than a well-meant but deeply personal one–and it wasn’t even directed at me!
I tried to break it down. After all, I knew this was coming. My previous partner had been totally blind, so we never encountered this situation, but as soon as I began dating my current boyfriend, I expected it. So if I knew it would happen, and had helped so many others bounce back after it happened to them, why couldn’t I anticipate exactly how much it would hurt?
In the end, besides the fact that I am an independent person who takes care of people as often as they care for me, the tone and style of her words were my undoing. This woman thought she was being kind. She simply wanted to commend this nice young man for what she considered exceptional strength of character. Her intentions were pure and I’m certain she did not understand that it might be the wrong thing to say–let alone harmful to the girl in question. I know all this, and yet…
I think it comes down to feeling like an object. The conversation did not include me, strictly speaking. I was not being spoken to, but about. This woman’s casual praise concerned me at least as much as it concerned him, but I don’t believe I was really meant to participate at all except to agree emphatically and gaze at him adoringly for the next few minutes. I was merely the tangible, living example of my partner’s essential goodness and compassion.
Now, he really is a wonderful human being, and sometimes having a blind girlfriend does involve offering a little extra assistance. We travel using sighted guide, for example. Other than a few relatively minor adjustments, we function as any other couple would. My blindness isn’t usually on my mind, and I doubt it’s on his either.
I know this–know it down to my bones–but I still feel insecure, hurt, and embarrassed when someone assumes otherwise. I found this particular incident so unsettling that it took me a few minutes to calm down fully, and I regret to say that I did not respond to her comment with as much grace as I should have. True, I tempered my “I take care of me–he really doesn’t…” with a smile, but I don’t know how effective my attempts to cover my shock and indignation really were.
So, okay, it was a difficult experience. It was humbling, because I thought I could handle such a thing with minimal effort. I believed I was near-impervious to this sort of thing, only because so many fellow disabled people had dealt with it first. What’s the big deal?
Ultimately, this is my takeaway: you cannot know how something will feel until you go through it. Guide dog handlers might be sure of their reaction when they experience their first access refusal, hoping their conviction that it’s wrong will carry them past anger or humiliation. Disabled people who are denied a job based on discrimination can’t know just how painful and frustrating it will be before it actually happens. A student cannot predict their emotional response to being barred from a course because they are deemed unemployable and unteachable until the moment it occurs. I know this, because I’ve been through the last two examples and witnessed numerous people go through the first. My experiences mesh with theirs: it’s easy to empathize; it’s much harder to deal with these situations when they’re directed at you, and only you.
So what can I do? What can we all do?
First off, we can avoid assuming we have such a firm handle on our emotions. We can choose not to claim we know how we will feel until we find out the hard way. We can definitely prepare for the eventuality, and do our best to steel ourselves against what we know we’ll face at some point. Even as we do this, we must be mindful that all that preparation might fly out the window when we need it most.
The more important step is to support other disabled people even more wholeheartedly than we have before. It is not enough to stand by and comfort them. We must avoid minimizing their feelings or pretending we can know what they’re struggling with if we genuinely do not. It may seem like we understand a situation intimately, but there’s just no replacement for first-hand experience.
Going forward, I’ll apply the lessons I learned from this encounter, while continuing to embrace the compassionate view I’ve tried to nurture all along. At the end of the day, I know I must not forget that this sweet woman’s only goal was to praise what she considered to be a small pocket of good in an increasingly dark landscape. She actually went on to say that we made a good couple. She wasn’t trying to hurt anyone, and while I know her viewpoint is wrong and even unhealthy, I can’t change it, not for now. All I can do is move on, let it go, and practice resilience. I hope that, next time it happens, I’ll be ready.

“Why Are You So Angry?”

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

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

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

 

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

 

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

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

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