Don’t talk about disability. Don’t write about your blindness. Don’t mention anything that makes you different. Feel ashamed of your cane. Never disclose. Blend in. Hide.
Not so long ago, I lived by these rules, and most troublingly, they were of my own making. I’d endured my fair share of awkward stares and been asked to conceal my cane in photographs, but on the whole, I was not discouraged when it came to simply being me. I was blessed with a relatively accepting community that understood blindness was a part of me (but not the only part), and never required me to pretend otherwise.
Yet, I felt an overwhelming desire to “be like everyone else.” I suppose most young people seek a sense of belonging, but this ran much more deeply than a youthful herd mentality. I was always a bit of a loner, so wasn’t as influenced by popularity contests as my peers.
Instead, I pursued a much less attainable goal: I wanted total erasure of my disability. Seeming “too blind” was a mark of failure. I’m not entirely sure where it came from, but a persistent sense of shame dogged me everywhere, and while I tried to combat it at different points and never resorted to refusing to use a cane, I fought my essential differentness just as fiercely. It didn’t show much, because on some level I knew it was foolish, but I carried a lot of internalized guilt and unhappiness, and the voices in my head told me to erase any traces of perceived inadequacy, which included blindness.
The way I saw it, disability was nothing but a stumbling block. If I was sighted, my life would be ever so much more fulfilling. (I’ve grown a whole lot in the last five years. It’s really rather astonishing.) I fervently believed that disability stood in the way of everything I lacked: a job, a boyfriend, general acceptance, and the right to be “normal.” Blindness certainly interfered with these goals, but assigning sole blame to my broken eyes was far more disabling than acknowledging there might be other factors at play.
When I was introduced to other disabled people who were content with themselves, the problem worsened. I was resistant at first. Why is everyone yelling about disability? Shouldn’t we be stressing how normal we are? Why aren’t we working harder to blend in?
My refusal to be identified with my disability began to permeate my writing, my self-image, even my relationships. I resented it when I needed help, and avoided writing about disability, even when encouraged to do so. I went on and on about how I wasn’t “like other blind people.” No no, I was much more committed to assimilation, and far more aware of my place in the sighted world. All these people placing disability at the forefront of their lives had it all wrong. The key to a better life for us all is to be more like able people! Why don’t they realize this? Why?!
I eventually had to come face to face with an uncomfortable truth: disability is not the only or most important part of my identity, but it matters, and it deserves to be acknowledged. Further, I was forced to admit that pretending my disability didn’t exist, and only referring to it in a self-deprecating, apologetic way wasn’t helping anyone, least of all fellow disabled people. The path to equality did not lie in erasure, but in acceptance. How could others accept us if we did not accept ourselves? How could others understand us if we didn’t open up? Why did it feel so wrong to express myself in the context of a disability I live with each day?
Of course, I still feel squirmy when my blindness is brought up in unrelated discussions. I dislike talking about it in job interviews, at the doctor’s office, in cabs, on the bus, on a street corner. I grow weary of proving that I’m more than my blindness, and that my disability doesn’t hamper other forms of self-expression.
On the other hand, I now feel at ease with bristling when someone suggests I put my cane out of sight. I make blind jokes with joyful humour rather than with shame disguised as mirth. Asking for help is still difficult, but I take it in stride rather than cringing with embarrassment. I speak up. I stand up. I don’t hide anymore.
No, blindness will never be the chief focus of my life, even though I consider myself a disability advocate. I’ll always frame my identity in a much more complex way than as “blind girl.” I am a blind girl, yes, but I’m also a writer, and a communications specialist, and a friend, and a lover, and a daughter, and a sister, and a musician, and a bookworm, and, as my Twitter bio reveals, a fierce defender of the Oxford comma.
All this being said, I hope I will never again believe that the best way forward involves concealment and shame and the quest to disappear completely. I’ve found that, in my own life at least, asserting my humanity is best accomplished by embracing my differences rather than shunning them. The world is far more diverse than many would think, and I’m merely a part of that glorious tapestry of diversity. I don’t have to be proud of my disability, or view it as a superpower, or “embrace” it. No one has to do anything in particular; isn’t that the whole point of our advocacy, in the end? Aren’t we all just focused on giving everyone equal choice and license to express themselves however they wish?
So, talk about disability, as often and as loudly as you want (or don’t, that’s okay, too). Write about your disability. Mention anything that seems relevant, even and especially if it makes you different. Never feel ashamed of your cane or service dog or wheelchair, or any other symbol of your disability. Disclose, if you think it’s wise. Don’t blend in unless you really want to. Most of all, never hide. Whether you live in the spotlight or in the most ordinary of circumstances, never hide.
Month: February 2017
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.
Staying Sane In A Culture Of Outrage
Unless you’ve been living off the grid for the past year or so (and if you have, congratulations, you’re not really missing much), you’ve been inundated with rage-fuel from just about every imaginable quarter, at least on the internet. The tumultuous American election, the unrest in Europe, the conflicts in the Middle East—these have all snowballed to create feelings of despair and near-constant outrage. Sustaining these feelings for any length of time is mentally taxing, and I’ve seen this struggle in the disability community and, of course, in myself.
Shouldering my personal mental health issues has spurred me to devise strategies for staying sane in these troubled times. While everyone on and offline will have, I hope, found their own effective coping mechanisms, I thought it might be prudent to share some of my own. My goal is to help others, including those without disabilities, safeguard their sanity while continuing to be present online. It’s all very well to fight on the front lines, but we must remember to look after our well-being, no matter how guilty it makes us feel to do so. We’re no good to anyone or anything unless we care for ourselves, first and foremost.
Learn to Sit Down
If you’ve spoken about any issue on the internet, you’ve probably been told to “sit the f**k down” a time or two. It can be discouraging when people demand your silence, particularly if they claim to speak for and represent you, but they have a point.
One of the first things I had to accept when I worried for my mental health was that sometimes, I had to put down my torch and acknowledge that not every battle is mine to fight. I cannot possibly join every crusade, champion every cause, or address every issue, in the disability community and elsewhere. I’ve found that sticking to the conflicts that affect me most directly is the best way to ensure that my voice is heard and my views are based on accurate information and experience. There is no point getting involved in a dispute I know nothing about, and once I recognized this, my life got a whole lot calmer.
In addition to preserving my sanity, this tactic meant I didn’t inadvertently misrepresent or harm anyone else, whose opinions are much more valid than my own. What right have I to speak on behalf of those with autism? Wheelchair users? Those who are deaf and hard of hearing? None whatsoever, I’d say. I’m free to discuss their general rights as disabled human beings, but my personal experience is totally irrelevant in most cases. I’d be annoyed if someone with little or no experience with visual impairment presumed to override my needs, and I imagine others in the community feel the same way.
So, learn to sit down once in a while. It’s worth it, I promise.
Know your limits
The next thing I learned was that my capacity for absorbing rage-fuel is finite. You may have discovered the same. While some of us grow numb to it all, developing armour and forging ahead, others of us need mental health breaks. Stepping away from social media can be therapeutic in the extreme. More than once over the past year, I’ve had to unplug temporarily, just so I could function normally and live my offline life.
Here are some signs to watch for if you think you might need some time away:
• Your heart races at the very thought of reading yet another inflammatory article or Facebook post, but you can’t seem to stop clicking on them.
• You find yourself jumping into strangers’ conversations at the smallest offence, determined to set them straight.
• You pick fights with friends who disagree with you, despite the fact that it achieves little and only ends in resentment or awkwardness.
• You find yourself under constant stress, especially when surfing the web.
• You’re losing sleep over the opinions of strangers, even when those strangers are ill-informed and unworthy of your time or energy.
• You’re unable to concentrate on your job, your relationships, and other infinitely more important parts of your life.
If you’re encountering any of these issues, back away, at least for a few days. Your energy is precious, and if you’re anything like me, you can’t afford to waste spoons on fruitless anger. I can just about guarantee you’ll return to the fray feeling more tranquil, and the energy you do expend on the things you care about will yield better results. Try it.
Be Open to Changing Your Mind
Personal growth is underrated in this polarized landscape. If you’re on the left, you’re expected to stay there under all circumstances. If you’re on the right, the same is expected of you. No matter where you fall on the spectrum, people demand that you pick a side and remain there. Nuance is so often abandoned in favour of toeing the party line, and this can be enormously stressful.
Remember that your principles, while they’re admirable, are allowed to evolve over time. If you receive new information that proves you’re wrong about something, be at peace with changing your perspective and your position. You may consider some beliefs to be inviolate, I know I do, but flexibility is its own reward. Keeping your mind open—but not too open, you don’t want to be swayed by every breeze—is vital to your growth and development. My own views have shifted over the years, which is reflected in my blog, but I’m not ashamed of it. All it means is that I’m capable of adapting to what life teaches me.
If communities as a whole, and individuals in particular, are totally closed to change, they won’t survive for long.
Don’t let anyone accuse you of betrayal or flip-flopping. Adjusting your beliefs and values according to new information you gather is normal and healthy. Don’t let anyone convince you otherwise.
You Owe Nothing to Anyone
Finally, keep this close to your heart: you do not owe anyone anything. You are not duty-bound to educate. No one should try to force you to act on any given cause. Respecting your limits and beliefs should be your highest priority. It’s worthwhile to advocate, and I prefer that people choose the path to education if they insist that nondisabled people behave properly around them, but you should never feel as though you have to treat every situation as a teachable moment. If you try, you’ll find yourself exhausted and frustrated. You might even snap one day and bite some innocent person’s head off. This has happened to me, and I recognized it as a signal that I could not be a perfect educator at all times. On days when I just don’t have it in me, I need to go about my business and forget about perceived duties to my community.
Furthermore, you don’t owe anyone a debate or an explanation. If someone seeks an argument with you, by all means engage them, but end the conversation once you’ve had enough. There are many resources out there. Point them toward those and withdraw before you become unduly upset. Let no one tell you what you owe them.
I hope these tips will help you. If you can, please pass them along to anyone you know who might be staggering under the weight of all they are reading and sharing. Tempting as it may be to steep ourselves in this culture of outrage, we must learn to practice self-care and cultivate self-awareness. Only then can we find balance.
Good luck in all your noble endeavours. Do me one favour though, and rest now and again.
Where's Your Dog? 