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“At least I think that’s so…”

Most years, an end-of-the-year post is a given, and it usually kind of writes itself, to be honest. Some good stuff, some bad stuff, some concerns for the future but also lots of hope. Our symbolism for the changing of the calendar year has always reflected this. The old year as an elderly person, shuffling off the stage and handing it all off to the baby new year. It’s a picture of achievements and struggles and stories completed, transitioning to all the promise and potential of a new chapter. But let’s be honest for a moment. This year, 2016, it feels different. I can’t think of anyone who looks at this past year with much joy, and if the baby new year 2017 could talk to the old man 2016 as he leaves, his words might very well be “My god, sir, what have you done?”

This has been a year of struggle, of deep divide in our society, and of a great deal of loss on a national but also a personal level for a lot of people. The coming year feels perilous, even dangerous for those of us who advocate for vulnerable persons. It feels dangerous for families of children with disabilities who depend on the federal government to make policy and uphold the law to educate and protect our kids. It feels dangerous for adults with disabilities for whom an already thin support system is just as vital but less assured than ever before. For young women with disabilities like my daughter, a population that has always been far more vulnerable to sexual assault and abuse than any other, the societal changes just beginning to really blossom are absolutely terrifying. They are terrifying for those of us desperately trying to protect and encourage those young women, too.

I’m not going to try to pretend I’m hopeful, or that I believe the inherent goodness of my fellow citizens of the world is going to be our salvation. Maybe I should. Perhaps the first step to making it rain is seeding the clouds, I don’t know. All I know for sure is that if 2017 is going to be survivable, if we’re all going to get out of this intact and not epically broken, it’s going to be because we did two things. Two things, just two, that’s what I believe is necessary. They’re easy, and they’re hard. We need to take care of ourselves. And we need to take care of each other, in a very meaningful and personal way.

Community has never been a more important concept than it is right now. Empathy has never been more necessary, even if it feels like a rare mineral buried too deep in a very cold earth to be extracted. If we don’t take care of ourselves and we don’t actively reach out to our neighbors and our peers and to those who might very well have no one at all, we aren’t going to make it. Of that, I am absolutely certain.

This next year is going to be crucial for my daughter. Schuyler just turned seventeen, which means that we’ve got about a year to establish what we’re going to do when she turns eighteen, with all that entails. She and I talked about it the other day, not our first conversation and certainly not our last. We walked around the pond next to our home, and we discussed what eighteen is going to look like, and how much help she’ll need.

She’ll need something, and probably a lot of something. Full guardianship feels like taking something from her, but it might very well be necessary, a fact that she seems a little more at peace with than I am. To me, independent living is a goal for her, a prize on which our gaze should never, ever shift. To Schuyler, it’s a mortifying thought once she starts to look at its details and its many hidden traps.

Ultimately, the choice will be 100% hers. We will advise, we will give her the very best counsel we can, but a year from now, as our society continues to change and the environment for those who are different and vulnerable grows more complicated, Schuyler will have to step into a world that is far less ready for her than I had hoped it would be, never mind how ready she might be for it. She’ll have to choose how much armor she’ll need. We’ll just be praying that we have sufficient armor to give her.

So yeah. 2017. This is where I’d normally leave you with wishes for a happy and successful new year, and believe me when I say that yes, I have those hopes for us all. But mostly I just want to say this, to everyone who has read my work and followed and supported my family and my little girl who is not so little now. I want to tell you that I will be here for you as much as I can, as much as you need me, and I won’t be the only one.

The disability community has never been all that great at coming together for a common cause; the tide has never lifted all our boats equally, and we’ve been pretty good at punching holes in each other’s hulls. But this year, I’m confident that will change, because it has to change, and we’ll do better, we’ll BE better, because we absolutely must.

I’ll leave you, and 2016, with the words of Tony Kushner, who also endured a time in which things got much worse before they got better, and people forgot their humanity before they found it again.

“Nothing’s lost forever. In this world, there’s a kind of painful progress. Longing for what we’ve left behind, and dreaming ahead. At least I think that’s so.”

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  1. Jim Rossow
    December 28, 2016 |
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      December 28, 2016 |
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    December 28, 2016 |