“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.


“Mommy, What’s Wrong With Her?”

So there I am, walking along, just trying to finish my shopping and exit the crowded mall as soon as humanly possible. Suddenly, my animated discussion with a friend about soft vs. hard-bristled toothbrushes (my life is unbearably exciting) is interrupted by an inquisitive little voice: “Mommy, what’s wrong with her?” In my experience, parents and other caretakers have one of three reactions: fear and avoidance, uncertainty and discomfort, or tranquility and patience. I don’t think I need to tell you which one I prefer.

Avoidance And Fear

I encounter this often. Children tend to ask difficult questions, and adults are not all-knowing, even if they’d like to be. Children tend to assume that grownups have the answers to all their burning questions, and at a certain age, especially, they delight in asking “why.” The trouble is that a solid understanding of disability in general and blindness in specific is rarer than I’d like. Rather than trying to grapple with things they don’t understand (or worse, misunderstand), adults remove the source of the curiosity, hoping that “out of sight, out of mind” will apply. Probably it does. Of course, this solves nothing: the child remains uninformed, and the parent does as well. Nothing is gained, and plenty is lost, too. Mothers, especially, react more out of fear than avoidance, and that fear can be passed along to the child. The last thing I want is for anyone to be afraid of or disgusted by me. I dislike being a walking curiosity, but frightening people is far worse. I’m the furthest thing from frightening. Please don’t hide your children from me; I have no plans to eat them. No, I don’t bite. No, blindness is not contagious. No, my parents did not commit grievous sins, and no, I’m not the resultant punishment. And … no, I do not use the stick to hit people (feel free to substitute “set my dog on people I don’t like” here).

Uncertainty And Discomfort

Some parents don’t run the second they see me, but they’re still very uncomfortable with both my presence and the need to answer their children. If I’m lucky, they haltingly explain that my eyes don’t work; if I’m unlucky, they resort to furtive mutterings about God having made a mistake or something. As far as I know, most religions assume that God is perfect, so that one makes little sense even to most religious people. Inquiring minds won’t buy that explanation for long; I know mine didn’t. I sympathize with the inability to put esoteric concepts into words, but blindness is not an esoteric concept (Cue debate about whether the word “esoteric” is itself esoteric.) I carry a white cane, so unless the grownup in question genuinely doesn’t know what white canes symbolize (in which case they’re to be forgiven), it’s not difficult to describe me to a child: she’s blind. Her eyes are broken. Her eyes don’t work. Use whichever phrasing tickles your fancy, but it all amounts to the same thing. It is very possible—and necessary—to explain disability to a child. Children need to know that not all people are like them. It is so important that they learn about disability, especially in a positive or at least neutral sense. Parents often transfer their fear and/or intolerance of difference to their children, and that needs to be counteracted in whichever way suits. Most people don’t have a particular aversion to blindness, so it’s totally okay to tell a child about it. It’s not taboo, shameful, or scary, and it shouldn’t be uncomfortable. My hope is that it will become normal, easy, and comfortable for all involved. People need to be less afraid of disability. We’d all be better off for it. Personally, I see no reason to go into detail about low-vision versus totally blind etc. All of that will come with time; for now, it’s most important that the child has a rudimentary idea of what blindness is.

Tranquility And Patience

Sometimes, and only a very few times, adults respond in a calm, constructive way. Those who know something about blindness will offer patient explanations, employing frankness and respect. Others—and I love them for it—address me directly: “Excuse me, but do you mind talking to my child? She’s very curious and I want her to hear the right answer, not the one I’d come up with on my own.” I’m always so pleased with this latter response. It includes me in the conversation, rather than treating me as though I’m the object of your child’s curiosity; the mall isn’t the zoo and I’m not a giraffe. That response also takes courage: the grownup in question has to address me directly, and ask whether I’m willing to educate a stranger’s child. If a grownup is courteous and brave enough to ask this of me, I always oblige—and I do so with pleasure. Some blind people hate to educate. They resent the fact that they are treated like poster children for blindness and disability. They just want to go about their days without being bothered. I, however, will take being asked to educate a child over being treated like an object of fear, disgust, or condescension. When people address me politely, ask respectful questions, and allow me to enlighten them on whatever they’re curious about, I’m happy to educate all day long! If you do nothing else, please discourage your children from shrinking from me in fear. I’m human, too.