Your daughter wants to sign up for a fun neighbourhood activity.

She has a disability–she’s scared about how people will respond to it. Respond to her. If they’ll point or stare (it happens). If they’ll ask her rude questions (it happens). If they’ll act like she doesn’t belong there, like she’s lying about it, making things up (it happens). But she wants to go, and it could be a good experience. Making friends, learning new things, being a kid.

The facility isn’t accessible. The facilities are usually not accessible so this doesn’t surprise you. It’s a community with limited facilities; maybe this was the best they could do. You, your daughter and (sometimes) her walker learn to negotiate the stairs that are the only way in.

One of the leaders of the group acts like everything related to your daughter’s disability is an enormous imposition. As if you are lucky she is allowed to be there at all.

She makes stupid arbitrary rules like all the kids need to stand. Your daughter can’t stand for very long wihout her walker or some kind of support. At first she tries to follow this rule and ends up in pain after every meeting. You coach her to advocate for herself–to take the damned chair and sit down when she needs to, because damn it, she shouldn’t be in pain after a fun community activity.

You worry about how off-site trips are going to go. You go around the leaders, communicating with the head office to ensure it will be accessible and she won’t be excluded. You don’t want to make things awkward by making the (adult) leaders (whose job it is to implement accessibility in the meetings and activities) upset (in case they aren’t able to control thesmelves and blame your kid and take it out on her).

She has now participated in two full years of this group. It is the start of the third. The leaders have had two years to get used to your kid, her physical limitations and her walker. You show up to drop her off and are told they will be in out the neighbourhood. That their route uses stairs. That she cannot bring her walker on foot. That the car is too full to bring her walker. Your daughter cannot come to a two-hour on-foot activity unless she is willing to hurt herself to do it.

Appalled, you turn around and go home.

On your way to the car, one of the leaders asks you to take home some cookies to sell.

The organization, via the head office, has a wonderfully inclusive accessibility policy.

The policy is obviously flatly disregarded by the local volunteers.

It happens. Volunteers are hard to come by. Hard to discipline; if they don’t follow the rules, they can quit. There’s no penalty. It’s hard to maintain oversight. It’s not like head office visits the individual groups to monitor accessibility. They only find out about problems when a parent calls to complain. Most of the volunteers are wonderful, and do everything they can to make sure that every girl can participate in every activity, that this is planned ahead of time and communicated.

But not all.

Some of them act as if they believe that disabled girls should stay home and not trouble people with their needs.

But you and your daughter have paid the registration fee like everyone else, and it’s the fucking law that there be no barriers, so you call to complain.

The head office is going to investigate. They seem shocked and genuinely upset abut the experience your daughter had, and you’re relieved that they’re taking it seriously. You hope something will be done that won’t result in the volunteer resigning and thus breaking the group. But this is a peace you’ve bought with your silence for two years now and you and your daughter can’t pay that price anymore. Pay it with days of sore ankles, sore backs, sore hips, tears, baths with epsom salts, motrin doubled up with tylenol.

Your daughter is a person who is empathetic and compassionate, much tougher than she should be, who tries hard to be good and doesn’t want to be a bother, who wants to follow the rules. She expects to be excluded, stared at, bullied–because she has been. She came home that night angry and hurt. She felt singled-out and less-than. In her words, she felt “degraded.”

The next night she cries on your shoulder.

Not because they hurt her. Not because she was excluded. Not because she missed out on an activity. She expects all of that.

But because she hadn’t been able to advocate for herself in that moment. Because she couldn’t find the words to say that would fix it.

She blames herself for being treated badly, then blames herself for not being able to say the right words that will fix it in that moment.

That is the weight carried by a visibly disabled thirteen-year-old. That is how much she already expects of herself, to be able to participate in the things that other kids do without a second thought. To bear the pain and anger of mistreatment so well that she can respond with perfectly persuasive eloquence.

This is the world we’ve made for disabled people. Disabled kids.

It’s not their job to fix us. It’s our job to fix it.

(And you can apply this, with some changes, to many groups in our society that face discrimination. That they are so often expected and even required to face the pain, anger, humiliation, even violence of being excluded and attacked with grace, equanimity, composure and eloquence–to take on the burden of education and conversion with love and compassion towards people who extended neither–is inhumane and inhuman.)

We live in a province with two pieces of legislation that require organizations, businesses and institutions to remove barriers to full participation for disabled people. The groups always have fantastic policies in place, with wonderfully inclusive language. And yet I know whenever Frances starts something new, or goes somewhere new, I need to budget time to call people about removing those barriers, often more than once. It’s exhausting and demoralizing. And I think about my little girl having to do this for the rest of her life, and–

As we all know, 2016 sucked.

Jesus Christ what a terrible year. From the never-ending stream of celebrity deaths (and not the awful ones! What? Why?) to the terrible environmental news and the disastrous American election and Brexit and Syria various global catastrophes to the smaller and more personal crises of harassment, Frances’s health issues, my Dad’s decline and death and its related catastrophes, friends’ minor and major upheavals, house stuff, money stuff–fucking hell.

2016, were you high? Please tell me you were high. Please, please tell me this was some opioid-induced fever dream from which, in two days, we will all awake with 2016 to do all over again with less of the soul-shredding. Because I don’t know about all of you but I am feeling a bit shell-shocked here. Like … is it done? Are we done? Is it going to get worse or is this the bottom? Can it get worse? Of course it can get worse, dumb question. Please, Universe, don’t take that as a dare. We are collectively penitent for our sins and I am in particular very sorry for choosing Flaws as my word of 2016. 

I am feeling kind of like the person who didn’t bring an umbrella, so everyone is getting soaked by the rain. Yes yes I know my accessories don’t influence weather systems and Donald Trump was not elected because I was looking to exercise my tolerance muscles, but holy motherfucking christ on melba toast. “I want to learn to accept the flaws in myself and other people,” said the naive January-2016 version of Andrea. The Universe cackled: “You got it!” And thereupon I was deluged with an epic thunderstorm of personal failings, familial grudges, medical snafus, friend crises, minor criminal shenanigans, a neverending stream of celebrity grief on FaceBook, and a collective decision by a throat-chokingly large number of my fellow humans to embrace xenophobia, racism, misogyny, anti-semitism, and homophobia. At some point in there my poor overwhelmed tolerance muscles hit a series of barbed-wire walls and quailed away. My god. I wanted to learn about Flaws, not see humanity drown in a toilet of its own inner sewage.

I mean there were good things. There was my aunt’s book release and there was finding out that Frances is probably not going to need hip reconstruction surgery for at least a few more years after all. Which hurray, but you know, first I had to be told that she DID need surgery and quite urgently in order to avoid dislocation, which turns out to have been a pile of horseshit, but just because it was horseshit doesn’t mean I didn’t panic for a few weeks straight.

Was it really just one year? Doesn’t it kind of feel like it was ten? I kind of feel like I’m ten years older.

There were good things. There were. And I am clutching them greedily in my secretive fists in case 2017 tries to take them.

And I promise I’m going to choose a much friendlier word for 2017. Something so inane and meaningless that taken either as a dare or a jinx, it would at worst be no more than a minor inconvenience. Like Tea, maybe. Puns. Artichokes.

I also promise that I did some sewing and some of that will turn up here.

What can I say about 2015? It was a year. It was a very year-like year, in that it had 365 days, divided into 12 more or less equal portions. On those days, many things happened. Some were bad things that turned out to be good, which was a relief. Some were bad things that stayed bad, which was unfortunate. Thankfully all of the good things that happened stayed good–none turned out to be, on later reflection, bad things.

Among the 365 dinners, lunches, and breakfasts consumed, hundreds of school days successfully prepared for and attended, dozen or so not attended, nights of more or less restful sleep, and other such mundanities, which even I yawn to remember, things happened which were not in the slightest mundane.

We exchanged a nightmare of a government for a government which seems, in its early days, to be at the very least fully awake and conscious of its surroundings. This is a positive development.

We had our hearts broken approximately 152 times apiece over the Syrian refugee crisis. Cumulative tears spilled over pictures of dead children on beaches and HONY’s ongoing refugee stories surely number in the billions. Scientists are still trying to account for the water usage in global models of rising sea levels. Further, we had the opportunity to discover which, of our friends, had been for many years absolute racists right under our very noses. We learned that the human capacity for hatred of other humans in distress remains tragically high in western culture, despite all the progress made in human rights and diversity over the past few decades. This struck a real blow to our collective hubris but not, alas, in the right quarters.

We learned that there are far too many people who are willing to support politicians and parties who build their platforms out of the wood of hate-trees, but not, in Canada at least, enough of them to win those politicians an election. Fingers crossed, America.

There were also events which were neither global nor national in scope. Some of them involved pieces of fabric which were assembled by hand or machine into various textile goods. However, in amongst navigating daily life and large piles of fabric, hugs were exchanged, tears fell, jobs were lost and gained, genetic conditions were considered and dismissed (all of them, in fact), deadlines were missed, bills were paid, cancer diagnoses were confirmed, birthday parties were held, friends were entertained and/or consoled as seemed appropriate; in short, it was a year. A year in which 365 days were experienced in a consecutive fashion, much like most other years. A year in which night followed day, which followed night, with periods of twilight mixed in for aesthetic impact. A year in which one person’s best day ever was someone else’s worst day ever, and most of us found ourselves squarely in between. A year in which beauty and ugliness were, as usual, so thoroughly co-mingled in most situations and places that there was no separating them.

2015: It was here. Now it is not.

2016: 365 days plus a freebie. Let’s see what we can do with this one.