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Odin's Birthday Shows We Mistreat Those Who Aren't "Normal"

03/22/2015 11:57 EDT | Updated 05/23/2015 05:59 EDT
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On Friday evening my Facebook feed lit up with the story of Odin Camus. His mom, Melissa, had asked for help making Odin's 13th birthday party special. I was at another birthday party that night -- my friend Ashley's* 41st -- and I thought about Odin a lot while I was there.

There were maybe 10 of us at Ashley's bash, at a long table in a cavernous midtown Toronto sports bar with a dance floor in the basement: a few of Ashley's oldest friends, some of her support staff, her older sister, and a newer friend, a riotous woman who lives in the neighbourhood. We were also waiting on two brand new buds who Ashley had just met at a resort while on a family vacation.

We shared snacks and pitchers of beer, and Ashley mixed and mingled with us and her acquaintances from the bar (she's a regular). She was a little anxious about her new friends coming, and checked her phone frequently; she was relieved when a text came that said, "On our way!"

When the new friends arrived, I understood why Ashley had connected with them. They were super-friendly, ready to hit the dance floor, and up for partying late into the night. They swept Ashley up in their fun-zone, and we ended up closing the place down, drunk, sweaty, exhausted, and happy.

Pretty typical-sounding Friday night, I know, except it was actually kind of revolutionary and rare. Because Ashley has an intellectual disability.

That is not the first thing I usually tell people about Ashley. To this story, though, I think it's relevant.

At first glance, some folks might think that Ashley must be difficult to connect with. But the pals who did polar bear shots and tore up the dance floor with her had spent the hour or two it takes to realize she's awesome. Not in a cute teddybear way -- she can be grouchy, makes no "logical" sense a lot of the time, is demanding and, sometimes, selfish. And she is hilarious and warm and profoundly brilliant. She is, in other words, a person. And, like other people, she connects with some folks and not with others.

Thanks to her own persistence and self-confidence -- encouraged in part by her formidable mom -- and the support of some brave and cool folks in her community, some paid and some not, she has put herself out there and given lots of people the chance to see if they connect with her. Some do, some don't, some understand how to relate to her totally naturally like the friends she made on vacation, and some take several years to figure it out -- like me.

I met Ashley 10 years ago when she hired me to be her community-based support worker. (I worked for her for 5 years, and we've been friends ever since.) Planning parties was always the hardest part of working for her. There was so much at stake. Would people come? Would the right people come? Would she have a good time? Would she feel like her choices were honoured? Would she feel like she'd authentically partied? Over the years we've had hits and misses, but lately more hits like Friday's.

It's taken the hard work and deep listening of dedicated staff, the formidableness of Ashley's mom, and the help of long-term friends. It's taken a few battles for Ashley's right to be in bars. And most importantly it's taken Ashley's own tireless work of insisting that she belongs and deserves a little bit of people's time and friendship.

Because of how Ashley is perceived, parties are hard. They are also deeply important to her. They are a way to measure the degree to which her pursuit of inclusion is working. And so we come together and work and listen and support her through the anxiety of planning. And so I think I understand what prompted Odin's formidable mom to reach out on Friday.

I was relieved and elated when I returned home and read about what a success Odin's party had been. I was blown away by how many people really gave a shit and went the extra mile to make his birthday special.

Part of me was still livid with Odin's 13-year-old peers for not RSVPing to his invites, and for subjecting him to bullying. I was upset, too, at their parents for not instilling better values.

I was also mad at the way Odin's story was framed in some accounts. While his mom clearly stated in her Facebook post that Odin has Asperger's and suffers from bullying, some news outlets wrote that Odin "suffers from Asperger's," neatly absolving the bullies of blame.

Neither Odin nor Ashley "suffers" from a disability; both live in an ableist culture that causes them suffering.

I'm not quite over my anger at Odin's peers, but I know that none of us has been taught to make space for people like Odin or Ashley. We are not encouraged to make the time and do the bit of extra work it might take to see if a connection can be made with them.

The onus is almost always on people with disabilities and their parents to seize the space in their communities that they are entitled to.

It pains me to remember how nervous I was to go dancing with Ashley in the early days of our relationship, how resistant I was to loving her just as she was, how much I thought she needed to change and learn to act more "normal," how much deprogramming I actually required.

Odin will remember this birthday forever, I'm sure, and what people in Peterborough and people around the world did for him is remarkable. What will be even more remarkable is if we can keep Odin in our minds now that his birthday is done. If, because of his story, we can be more aware of how many other stories like his are going on right now. If we can start to think about how our culture enables this story to happen again and again. If we can think of Odin when presented with the opportunity to hang out with someone who initially seems tough to hang out with.

Odin and his wonderful mom have started a conversation. It's up to all of us to keep it going. My hope is that if we can keep him in our minds, and remember when we came together in support of him, and cried all the tears at his story's success, that one day, alongside tweets and texts from awesome strangers -- let's keep 'em coming next year, why not? -- there are a few people at Odin's parties besides his mom that he knows well. That he won't even have time to look at his phone because he's too busy dancing -- or bowling, or whatever he loves to do -- with his own dear buds.

*I've changed Ashley's name to protect her privacy.

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