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19 Jan

You And I Were Meant To Fly, And, Also Tweet (On Wheelchairs And Internets And Raising Our Voices, Oh My)

Once upon a time, in an Internet far, far away – which is to say, 6 months ago – I tweeted about Air Canada. I tweeted about them a few times, actually – I tweeted that they’d broken my nephew’s wheelchair, and I tweeted that they were working to replace it, and then I tweeted that they hadn’t, in fact, replaced it and had instead left Tanner stranded, immobile, while his mother and I scrambled frantically to reach someone at Air Canada on the telephone and did anyone out there have a number that didn’t start with 1-800 and end with ‘we’re sorry, ma’am, but you’ll have to call back on Monday’? – and it kind of started what is often colloquially referred to as a shit storm.

I’ve never written about that shit storm. I’ve never written about it because, frankly, by the time it was over I was sick of the whole thing. I was sick of the whole thing during the whole thing, actually: I was sick of what it did to Tanner and my sister; I was sick of how it took hold of us and shook us and demanded that we explain ourselves, dammit; I was sick of how it spilled TV cameras and reporters into the hall outside our room and how it pulled them along behind us on the sidewalk and in the park and on the subway and demanded that they ask, again and again, does this demonstrate the power of Twitter? Does this demonstrate the power that Twitter gives the little guy? I was sick of trying to explain, yes and no; it’s complicated; this is a triumph, and also not a triumph, and could you please leave that little guy alone? Because that little guy is scared and confused by all of the attention and this isn’t helping.

All of which is to say, that whole thing that happened on and through Twitter and the Internets wasn’t, at first blush, a triumph of the little guy, or at least, not a triumph of our little guy, not in ways that mattered to us and to him personally, and it was hard to articulate that, and so I gave up trying.

Then, this week, a friend of mine wrote a post about feeling slighted by a retail store – a store selling mattresses, specifically – that was inaccessible to her in her wheelchair, and the trolls descended, accusing her of fabricating her distress, and of abusing her social media influence in complaining. “You wrote this post to gather enough support for a Twitter campaign that might possibly net you some material good will from the Mattress store,” said the troll. “Because even though there are a whole lot of people in a much worse situation than you, YOU CAN start a campaign and get free shit. Like HerBadMother, like others, who see any opportunity to slam a company as a way to get something for nothing.” And my head blew off, which is to say, I realized that I couldn’t not write about what happened this past August.

It wasn’t the first time that I’d heard that argument. That argument abounded in the hours and days and weeks after the Air Canada debacle, in comments on the news stories and in blog posts and comments to blog posts, etc, etc. It was everywhere: typical privileged mommy blogger, taking to Twitter to harass a company until it gives her stuff. And: it’s disgusting, instead of dealing with company privately, she complained publicly in the hope that she’d get something. And: this is the problem with the Internet, it makes people feel all entitled and stuff. It’s the same argument that was leveled at Heather Armstrong when she complained publicly about Maytag. It’s a very popular argument among those who hate seeing others – especially mothers, although that is another topic entirely – raise their voices about anything. But here’s the thing about this argument: it contains some truths. It’s true that I’m privileged. It’s true that I was motivated, in discussing publicly what was happening with Air Canada, to get something. And it’s true that I felt entitled to get something as a result of that public discussion. But those truths don’t add up to the conclusion – that I was engaged in a selfish and nefarious enterprise, that anyone who complains about anything is engaged in such an enterprise – that the critics were (and, relevant to Anissa’s case, are) asserting.

Let’s start with the latter two truths: that I was, in discussing publicly what was happening with Air Canada, motivated to get something, and that I was entitled to get something as a result of that public discussion. My initial tweets about the destruction of the wheelchair were completely spontaneous – the chair had come to us in pieces, Tanner was distressed, my sister was huddled in a corner of La Guardia, sobbing – and, as I do pretty much reflexively when something extraordinary happens, I tweeted it. Air Canada killed Tanner’s chair, I said. They killed his chair. And they had. It was horrible. Tanner, who is unable to even sit upright without proper support, was balanced precariously and painfully in a collapsible hammock-style chair while his own, $10,000 custom chair sat in pieces before him. Hell yeah, I tweeted it. I wasn’t motivated by anything other than the need to express my alarm in a manner that didn’t involve sobbing at the baggage handler, but still. I tweeted.

But when Air Canada management showed up to address the issue, I calmed down. And I tweeted as much: Air Canada is dealing with it. Taking deep breaths. I told Twitter that I was giving Air Canada a chance to resolve the problem. It was only when Air Canada failed to resolve the problem as they’d promised, and in fact had made things worse by stranding Tanner with neither a repaired chair nor a replacement chair, that I went back to Twitter and pursued, again, the discussion. But even then, I didn’t do so to complain; I did so to get help. I went back to Twitter to ask Twitter if anyone, anyone, could help me find a phone number to reach someone at Air Canada who could help. The numbers we’d been given were going to voicemail, and Customer Service was decidedly un-servicey, and we were stranded with a disabled, terminally boy who didn’t understand why he couldn’t get out bed to use the toilet. So, yes, I took to Twitter. And I was motivated to get results. I was motivated to get help. And hell yes I felt entitled to that help. Air Canada had promised it. I had a means to pursue it. I intended to – and did – use that means, and use it hard.

Which leads us back to the first truth that I cited above: that I was, that I am, privileged. I am absolutely privileged. I had a means to pursue that to which I felt entitled. I had – have – a substantial number of Twitter followers, and friends (not least, this guy) with even more substantial numbers of Twitter followers, and the advantage of a very large and very social media engaged community following Tanner’s story. I can get a story out there, and when the story is one that someone like Alyssa Milano is following, I can get it even further. Not everyone can do this. I was and remain painfully aware of that fact. Painfully, because it’s unfair, and because the implications of that unfairness are distressing. If this had happened to my sister and Tanner when they were traveling on their own, they would have been shit out of luck. There would have been no social media recourse; no Twitter followers would have arranged for replacement wheelchairs to be sent to their hotel; no local restaurateurs would have sent meals while they were stranded; no Canadian politicians would have seen the story on the Internet and intervened to talk to Air Canada executives on their behalf. I received thousands of emails while we were in New York, and in the days following, and to this day, from disabled persons who had had similar experiences with airlines and other companies, who spoke of damaged wheelchairs and walkers and oxygen tanks and of inaccessibility and of shame, who asked if I could help them, if I could support their causes and campaigns and efforts to just get back that walker that was lost in baggage.

I can’t help every such person. Even if I could wave a magic wand and make the community of tutu-clad fairy god-nerds grow into a vast and powerful army of advocates (I wish, I wish), there would still not be enough virtual megaphones in play to ensure that every person gets the opportunity to have their voice heard, as they deserve. And therein resides the nub of the issue: we are all entitled to have our voices heard. We all deserve to have our voices heard. But there aren’t (yet) enough virtual megaphones to go around, and not enough virtual podiums to stand on, and not enough channels of broadcast and exchange accessible to enough people to allow for those voices to rise on their own. So those of us who do have access to those megaphones/podiums/broadcast channels have an obligation to use them, and to use them well, and to seize any opportunity that we can to use them on behalf of others. We just do.

The promise of the Internet and social media for public discourse is to make it possible for everyone to be included in that discourse, for everyone to have a voice, whether that voice is used to pass judgment on Ricky Gervais’ performance at the Golden Globes or to debate the finale of Lost or to share their experience of parenting or to get help with a customer service problem or to raise awareness of certain issues or, you know, change the world. We’re nowhere near there yet. But every time we push that discourse – to include other people, to include other topics, to create a climate of constructive criticism on matters that require such criticism (such as, for example, the adherence to principles of accessibility by airlines or mattress stores), to make it clear to everyone that, yes, you can and should use your voice – we get a little closer. And yes, sometimes that journey involves stumbling into potholes – there are always going to be people using their voices irresponsibly and inappropriately (what that means, exactly, requires another post entirely) and for what we might consider the wrong reasons – but the existence of potholes is not a reason to stop walking. We make this road by walking it, by pushing ahead, by using our voices as we would our feet and letting them carry us forward. But if we keep yelling at each other about the potholes, we’re never going to get anywhere.

Tanner eventually got his chair back, repaired as well as it could be. Air Canada made, and continues to make, every effort to make sure that the end of that story is a good one. They’re sending him (in partnership with Disney) to DisneyWorld, with his cousins, which is the wish at the very top of his life list. This wonderful, of course, and totally unexpected. Is it worth what we, what he, went through? No. I’d spend the money to make that trip happen myself, if it meant we could erase his experience of those five days, or even just his memory of any one of the people standing in front of him and saying, as if he wasn’t even there, this little boy is going to die soon! (Do not get me started on how that has messed with his head. DO NOT. ANGRY CATHERINE.) But – and here is a difficult contradiction – it was worth it, in some other, different ways. It was worth it for the awareness that it raised and the discussion that it provoked. It raised awareness and provoked discussion about the challenges that are faced by persons with disabilities – discussion that is, to understate things, difficult to generate and sustain among able-bodied persons – and about muscular dystrophy and, of course, about the power of social media to get voices heard. The Disney trip is nothing compared to this.

For me, anyway. For Tanner, the Disney trip is a magical, wonderful thing that is giving him something to smile about every day. He’s too young to be concerned about being heard and empowering voices and the power of social media for change, etc, etc, what-have-you. But I’m not. We’re not. We’re old enough and wise enough to know that those things matter more than meeting Mickey Mouse. And we’re privileged enough to be able to do something about them. So let’s do that. Let’s agree to try to focus on expanding the opportunities for discourse – for empowering voices, our own and those of others, and getting them heard – rather than looking for reasons to shut them down. Let’s keep stomping our feet (I am playing fast and loose with the metaphors now, I know) and moving forward and pulling as many people as we can along with us. Especially those whose feet can’t stomp.

Especially them.