In Praise Of My Mother

It’s been a long time since I’ve posted something warm and fuzzy, and I think Mother’s Day is a perfect excuse to do so. I was blessed with terrific parents, and what better way to honour them than with a blog post?
Today, I write a tribute to my Mom, who taught me the meaning of strength and perseverance, even when you’re tired and you’re frustrated and you just don’t wanna.
Don’t worry, Dad: yours is coming in June.


“It hurts to be beautiful,” my mom would say as she pulled my unruly hair into a ponytail, “now hold still.”
I did not want to hold still, however. I wanted to read a book, or run around the yard, or sing to myself in a corner. Ultimately, I wanted to do anything but sit, unmoving and docile, while my hair was tugged and twisted and manipulated in ways I was sure must violate some kind of child abuse law.
“I don’t want to be beautiful!”
“Yes, you do,” Mom would mutter distractedly through the pins in her mouth.
“What’s the point? I don’t care what I look like.”
There it was: the argument that was difficult to win when dealing with a blind child who treated “girly” like a curse. I was usually okay with playing dress-up and so on, but when it came to the everyday agonies of making oneself presentable, it took me a lot longer than I’d like to accept that, even though my own eyes didn’t work, other people’s did—and what they thought mattered.
Even if I’d been an obliging child, raising me would not have been easy. Mom’s responsibilities extended far beyond wrestling me into some approximation of “well-groomed” after all. Raising a child with a disability meant both my parents were forced to recognize that sometimes life simply isn’t fair. Having a blind child, though challenging, was probably the least of Mom’s problems. Society has always gone out of its way to shame mothers, and Mom was not exempt. If anything, raising a disabled child actually made her more vulnerable to it. More than once, another mother has told her that, had I been their child, I’d have turned out better—more independent, perhaps, or more competent, etc. In these cases, Mom, who is a far nicer person than she has to be, has simply shrugged it off, reasoning that “if they knew what it was like, they wouldn’t be saying that.” Let’s just say I’m glad I won’t be having kids; I don’t think I could be half so tolerant.
Yes, having a disabled child means that several parents you meet, regardless of how ill-informed and inexpert they may be, will feel comfortable telling you all the ways in which you’re messing it up. Some are so confident that they’ll insist they could do it better, and as the parents who actually know how difficult it can be, mothers like mine are left to shake their heads and get on with it.
Then, there is the mama-bear instinct to channel or suppress, whatever the case may be. The world is a cruel place, and Mom had to come to terms with the fact that not everyone wanted to make that world easier for me. She had to learn that we live in a world where a teacher could tell her, to her face, that she should be grateful I was allowed to go to school at all. She had to listen to me cry while dealing with accessibility issues and unsympathetic educators, all the while knowing that this was the new normal. She was forced to stand by while a potential employer refused to hire me solely because I would be defenseless against armed intruders (yes, that is the excuse they used). She had to understand—and I imagine this is an ongoing process—that my life was going to be a little harder than it should be, and that she could not shield me. Instead, she’d have to let my independent spirit do the shielding, while offering support from the sidelines. There is a time to be your child’s fiery advocate, and a time to step back and let her figure it out. It’s a hard lesson to master.
There is so much we owe to our mothers, whether we are disabled or not. While all mothers have plenty of trials to face, I believe mothers of children with disabilities, illnesses, and other traits that make them seem abnormal to the rest of society have an especially heavy load to bear. Mom gets extra points for dealing with me; sadly, I can’t blame my difficult daughter status on blindness, as convenient as I’d find it.
So thanks, Mom, for shouldering all of these things while managing to treat me like a “normal” kid, and raising my sighted sister at the same time. Thank you for putting up with my grumbling long enough to make ponytails and take me clothes shopping and all the other unspeakable tortures about which I was so vocal. Most of all, thank you for keeping your head up when society wasn’t kind. Being a mother is tough when all the odds are with you, and you didn’t have that luxury.
Happy Mother’s Day, Mom.


If you haven’t yet done so, give your mom a call and thank her for whatever special gifts she’s given you over the years. Moms like it when you call.

Dear Parents: Think Before You Share

If you’ve ever googled any specific disability, you’ll find public Facebook and Instagram profiles, blogs, biographies, anthologies, and videos about what it’s like to parent a disabled child. The angle might change a little. Some parents want to tell you that it’s all roses; others want to point out that it’s occasionally rather awful; some want to assert that it’s somewhere in between. Whichever angle they take, though, their actions amount to the same thing. They are constructing, however unwittingly, a publicly accessible wealth of data about their children, often in the absence of knowledge or consent. Your blind toddler is too young to tell you whether he wants his pictures posted publicly. Your twenty-year-old mentally disabled daughter may be incapable of consenting, even if she does know you’re uploading pictures of her for the world to see.

I never really gave much thought to the activities of parents on social media until the advent of the #FreeTheNipple campaign. Facebook got in trouble for removing pictures of breastfeeding mothers, and there was, predictably enough, mass outrage. People assumed that the removal was due to an inability to tolerate a naked nipple. Breastfeeding isn’t gross or shameful, said protesters, and there is no reason to take down such photos when equally explicit ones are shown elsewhere in much less innocent contexts. Amid all the righteous anger, though, nobody seemed to be considering the rights of the children in question. Everyone was fixated on the woman’s right to display her breasts, while failing to analyze whether the children should be in full public view before they are old enough to know what Facebook is, let alone give informed consent. This isn’t 1990. Photo albums aren’t locked up in a dusty closet. Long after your friends are done cooing over your little one, the pictures remain easy to find, especially if your privacy settings aren’t as airtight as they ought to be.

I suppose one might say I’m fear-mongering; what’s the harm in showing cute pictures of your kids, after all? I really think that the game changes when it comes to disabled children. Many of the blogs and public profiles dedicated to parenting contain details of bad days as well as good days. The indignities of life with, say, autism are often described in full detail right alongside the joys of parenting these children. It’s one thing to post a cute picture of your daughter using her first cane, but quite another to go on at length about your autistic daughter’s most recent meltdown. I don’t know about you, but I wouldn’t appreciate having that plastered all over the internet for everyone to…what, sympathize? Gawk? Cluck their tongues in pity? Hail my mother as a martyr? None of these reasons seems adequate to me.

I get it: parenting a disabled child is sometimes exhausting, lonely work. It can be therapeutic to post your struggles online, where you may seek support from informed strangers outside your immediate social circle. It’s comforting to find a network of parents just like you, who can offer advice and guidance. While you are enjoying all this support, though, I urge you to take a moment to consider the focal point: your child. To what extent are you sacrificing their personal privacy for public solidarity? Are you surrendering too much detail about their lives where anyone at all can see it (including future employers, peers and so on)? Are you exposing potentially sensitive information that they may one day be upset by? The blogosphere can be a dangerous place to express unpopular opinions which may be why so few voices are countering the main viewpoint.

It’s one thing to blog about yourself. While I am relatively circumspect about what I discuss, I do write with intentional frankness. As someone once described it, my writing “goes there” and I’m proud of that. I do mention others and explore universal themes, but the blog will always have its roots in my personal experiences. Privacy, it seems, is a human right that is cherished less and less. If you’re going to endanger privacy, let it be your own.

When it comes to your disabled child, though, you should be as careful and thoughtful about your posting habits as you can. Ideally, you should remain anonymous, but if you can’t (or won’t), at least be cognizant of your actions’ potential impact. Maybe it feels liberating to hammer out a post after a long day of dealing with hardship. Maybe it gives you pride to compose a detailed article about how your blind daughter has finally figured out how to, say, navigate her first school independently. It feels great to share these things, I know. Our natural human desire to share everything that matters to us is what keeps Facebook and Instagram in business, after all. Just remember, as you fulfill this desire, that it’s not all about you.

It is not necessarily selfish of you to blog and share photos and other media about your child publicly. It’s not inherently wrong. In the context of an anthology or other formal document, it might even be a good thing, because you are bringing to light different facets of parenting (under your editor and publisher’s watchful eyes). One of my editing projects centred on just such an anthology, so I’m the last person to say none of this information should be available.

Do hear me out, though: it becomes risky, whether you’re doing it for support, or to raise awareness, or to encourage others. I’ll put it very bluntly: your need to feel the warm fuzzies with every careless post is far less important than your child’s right to privacy. Don’t use good intentions as your escape hatch. Once you release personal information, it can’t be recovered. We’ve all heard the lectures. If your physically disabled infant is too young to consent, you should be very strict about what you share. If your mentally disabled daughter is incapable of giving informed consent, you have to be even more respectful of her rights.

Parenthood is not ownership. You are raising people who may be able to view the material you exposed when they were too young (or otherwise unable) to say no. These children are not walking, talking sources of validation. They should not be used as a “like” generator. They do not exist to promote your worth as a parent and you should never treat parenting as reasonable justification for playing the martyr. Most of you would never do any of this, but you still need to put your child first. So please, think before you share. Children have rights, too.