“A” is for Advocacy

I’m not a parent, but the internet has exposed me to the struggles, joys, and everyday dilemmas of parenting in this ever-connected, ever-judgmental world. I read discussions about how to teach kids to interact more gracefully on the playground; how to remove bread from a hot toaster; how to play traditionally-inaccessible board games; how to shave sensitive areas of the developing body. Each time I see one of these, my heart soars. My parents had to raise me with sporadic, impersonal support, while parents who knew nothing of disability looked on with varying degrees of disapproval. They made it work, but there are many gaps in my basic skillset that might have been filled by an online community of disabled people who were willing to share their wisdom. If Disability Wisdom or VI Talk had been around when I was growing up, I might not be so wary of toasters.

The one skill that seems underrated, particularly in rural settings, is advocacy. Several of my teachers, visual consultants, and special education coordinators were adamant that I master an array of miscellaneous skills, like cutting paper with scissors, drawing the human form (with what little vision I had), and writing a legible signature. My childhood involved hours spent cutting a piece of blank paper into a series of meaningless rectangles that were destined for the recycle bin. I practiced my signature each day in a special book, trying vainly to copy the raised signature on the front cover, and wondering why sighted people were allowed to have illegible scrawls while I had to achieve perfection. (These days, my signature is defiantly unreadable.) I connected dots on graph paper. I completed strange worksheets with tactile circles, using a different colour for each one. These exercises ensured that I’d always be comfortable with scissors, and have a rudimentary idea of how to draw a human face, but they didn’t teach me how to stand up for myself, or ask for accommodations, or interpret my rights as a disabled person. Every now and then, someone would mention that I must always be my own advocate, but the concept was never expanded upon, and far more attention was paid to how I held a pencil—a pencil I’d seldom use, since I couldn’t handwrite—than how well I understood what being a disabled adult might be like.

Steeped as I was in traditional Catholic culture, I was an obedient student rather than a respectful one. Fear and anxiety were far more influential than respect or interest, and while I enjoyed school and hungered for knowledge, my primary and secondary education rarely encouraged me to grow into anything more than an unquestioning rule-follower. I’d occasionally be chastised for seeming too passive, or criticized for failing to take initiative, but years of conditioning kept me from voicing disagreement or making my own decisions in almost all cases. After all, what did I know that grownups did not? Who was I to request accommodations that made sense to me when someone who earned a lot of money and used plenty of high-level language felt differently? How could I ever provide insight about my own learning style when someone with decades of experience knew best? I carried on in this way for far too long, wanting to take the wheel but convinced I’d cause a wreck. Systematic rejection of my ideas and insights bolstered the illusion. By the time I left grade school to start my postsecondary adventure, I had very little idea that my rights would constantly be challenged, or that I had disability-specific rights at all.

In university, I soon figured out that even though I had no foundation to build on, I’d have to learn how to be my own advocate, and learn it quickly. My life and education were in my own hands, and those hands were more capable than many had let me believe. With ample coaching and encouragement from newly-discovered disabled friends, I engaged in the controversial art of speaking up. I practised saying “no,” or “yes, but not that way,” or “please Don’t grab me,” or “I want to try this instead.” When roadblocks were put in my path, I didn’t docilely accept them as immovable parts of my reality. Sometimes, I was even a little bit firm. I worked to let go of “I’m sorry, that’s probably silly” and “What do I know?” In place of those familiar crutches, I paid attention to what worked for me, and asked for it. When charm failed, which wasn’t often, I used blunt logic, and usually won. It was a novel and exhilarating way to live, though it came at a cost. Since acquiring advocacy skills, my life has never been as calm and peaceful as it once was. Taking control of your own life is exhausting business.

Living in a more tolerant and accessible world doesn’t mean everyone can sit back, relax, and forget how to take ownership of their lives. If anything, widespread complacency about our supposedly-civilized society means parents need to be even more diligent about instilling advocacy skills in all children, not just disabled ones, early and often. I’m not suggesting that children should be taught to despise authority or behave disruptively for the sake of it, but they should be as prepared as possible for the ignorance, bigotry, and exclusion they will inevitably face. Adults are not always right, and it’s neither healthy nor safe to teach kids otherwise.

Whether you’re a parent of a disabled child or a newly-disabled adult, don’t ignore the limitations of a life without solid advocacy—a life far more limiting than a disability could ever be. Be mindful that third-party advocacy will never match the advocacy you can do for yourself. Value the insight and experiences of experts, but be open to customized solutions. Seek advice from the disability community, but remember that conventional wisdom is not without merit. Recognize that not every problem is a disability problem; some of them are just ordinary problems that can be solved in ordinary ways. Emphasize the powers of courtesy and respect, but never underestimate well-harnessed anger. Acknowledge social hierarchy, but be aware that hierarchy is commonly abused.

Parents may resist teaching advocacy skills, and I have the greatest sympathy with them. Advocacy is frightening, and frequently disappointing. It is delicate, thankless, much-maligned work, especially when it’s done by young people. It will not always produce the hoped-for results, and it’s rarely much fun. Understand that advocacy is tough to cultivate, and likely to inspire nasty pushback from people your child loves and trusts. Be ready to deal with the possibility that your child’s advocacy will sometimes be directed at you, and that you won’t like how it feels. Know that you will need to respect their advocacy, even if it hurts or upsets you. Accept that you are not exempt. Shudder at these harsh truths, and teach it anyway.

Advocacy skills have guaranteed that my education was useful and comprehensive. They prevented me from being barred from services I required. They help me be productive and successful. Advocacy is the cornerstone of every fruitful thing I have ever done for my schooling, my career, and my relationships. It keeps me on my feet when the wind is doing its best to knock me over, even and especially when that wind is coming from an unexpected direction.

Before you worry too much about signatures and scissors and the exact method of removing bread from a toaster, remember that A is for advocacy. Start there, and everything else should follow.

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

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

Dead Ends: 6 Battles I Refuse To Fight

I’m a fan of healthy debate, and since I can see grey in just about every conceivable area, I’m all for engaging with everyone about nearly every topic. However, I’m finding it progressively less useful to engage with certain types of people, who continue to pick fights with others about debates that should, in my opinion at least, have been retired long since. Some perspectives are simply too antiquated, inaccurate, or unconstructive to be worth examination, and today I’ll present a few of the arguments I’ve promised myself I will never become embroiled in again. Part of a healthy lifestyle is knowing which battles to fight and which are lost causes, and this is a list of arguments I believe we need to put to bed, once and for all.

1. Cane versus guide dog: travel is intensely personal, and any cane vs. guide dog debate needs to account for individual preferences, needs, and abilities. Guide dogs offer numerous advantages, but they are not the only efficient mobility tool. Some blind people don’t like dogs, dislike guide dog travel, feel more confident with a cane, and/or are unable to afford a dog. Additionally, canes offer their own advantages. You don’t need to feed, relieve, or plan your schedule around a cane’s needs, and the cane provides tactile feedback some blind travellers, like me, consider essential. So, however you might feel about it, please stop arguing with people about which is better. Instead, focus on the advantages and disadvantages of both, leaving it up to each blind person to decide for themselves. Blanket statements and definitive answers simply aren’t useful, so there’s no point in resorting to them.
2. The duty to educate: I have always valued my ability to educate able people, and am usually open to answering questions and spreading accurate information. Education is one of the primary purposes my blog exists, and was the original reason I began it at all. I don’t align myself with those who insist it is every disabled person’s duty to educate, though. If you enjoy it, and find yourself routinely annoyed by people’s ignorance, then you should certainly raise awareness and answer as many questions as you’d like. If you’re more concerned with going about your business unencumbered by other people’s curiosity, or if you just don’t like putting yourself or your ideas out there, by all means refrain from doing so. Ultimately, you are the only one who should dictate how you spend your time, so I hope people will eventually stop squabbling about duty and purpose and obligation.
3. Public versus mainstream education: I spent grade school and postsecondary school in mainstream education—that is to say, I attended publicly funded institutions and did not generally receive specialized education tailored to blind students. The only school for the blind in my country was too far away to be a viable option, and in any case I preferred to be integrated into the sighted world as much as possible. I’ve heard horror stories about schools for the blind. People talk about lowered academic standards, inadequate enforcement of social skills, abuse that went unchecked, and a serious lack of encouragement when it came to helping blind people prepare for independent living. By contrast, I’ve heard other students praise their schools, having learned valuable skills mainstream schools usually cannot teach, and being among people who understood them and their struggles intimately. My own experiences with public school were mixed. I had to balance the benefits of inclusion with the severe lack of resources my rural school was able to procure. All in all, I don’t think it’s useful or wise to argue back and forth about which type of education is objectively better. The reality is that the subject is too varied and too personal to debate properly, so while it’s fair enough to pick apart the merits of specific institutions, making general statements demonstrates a disregard for nuance that seldom does any good.
4. Sighted versus blind partners: I covered this topic extensively in previous posts, and that’s the last I really want to say on the matter. It’s all very well to discuss the merits of dating both types of partners. Blind partners are able to understand us on a gut level, which can be enormously comforting. Sighted partners are typically able to provide assistance, such as driving us around and helping us navigate unfamiliar areas, which is an awfully nice perk. I fail to see the point of telling fellow disabled people whom they should date. Regardless of personal preference, we shouldn’t be meddling in anyone else’s love life. Let people exercise agency, because goodness knows able people love to badger us as it is. Promote freedom of choice, and otherwise keep your nose out of other people’s romantic lives.
5. Language policing: this is another topic I’ve covered before, and once again, it’s an argument I refuse to revisit. It’s one thing to be sensitive to other people’s wishes and keep up with the evolution of language, but when you are describing yourself, do so however you see fit. No one—and I do mean no one—has any right to insist you should change or criticize you for using incorrect labels. You are in charge of your self-concept and identity. Don’t let anyone convince you that you’re “doing it wrong.” Everyone is entitled to their opinions, but that doesn’t mean you have to listen.
6. Doing blindness the right way: there is no such thing as “doing blindness wrong.” Really, there isn’t. There are harmful behaviours and unwise practices, but disability is just a personal trait. Just as there’s no right or wrong way to be queer or female, there’s no wrong way to be blind. That doesn’t mean you’re above reproach and should be insulated from criticism; part of a community’s job is to watch out for each other and call each other out, but anyone who tries to claim there’s only one way to live this life is hopelessly narrow-minded. They can share their definitions of a life properly lived, but you don’t have to care.


Do you find yourself sick to death of any dead-end arguments? Feel free to share them in the comments; I’d love to hear them.