This has been a rough week for me. Not like tragic, skies-darkening, hide-the-sharp-things rough, not even close. But I’ve been doing a lot of thinking about what I’m trying to accomplish as a writer and an advocate, or if I want to continue trying to do so in the manner in which I’ve been operating for the past few years, and I’m not sure I’ve come to any solid conclusions. It’s been a week, and now I’m sitting down to write… something. I don’t know what. I’ll let you know how it looks in a few paragraphs, if you stick around that long.
There are spaces in the world, you might call them safe places, although sometimes they can become negative places. In the best cases, we create spaces where we can express our hopes, our fears, our outrage, our flaws, and of course our failures and successes, too. Sometimes we occupy public spaces for temporary piece of time, such as when we go to mainstream publications or public policy meetings. We wear our advocacy t-shirts and we deliver our speeches, and then we leave, going back to the places where we can be as visible or invisible as society wants us to be.
Sometimes those safe places are more permanent. Sites like this one are obviously going to try to be spaces for parents and supporters of people with disabilities. I promote my pieces on all sorts of social media outlets, but I think folks coming to read do keep in mind the community that gathers here.
People write about disabilities from many perspectives, as professionals or family or as people with disabilities themselves. My perspective has always been as the father of a little girl who is wild and wonderful and unpredictable, and who finds the world as challenging to her as she is to it. I’ve learned a great deal about assistive technology, intellectual disability and speech disorders, and I’m becoming quite the fancy pantsed fellow at public policy and advocacy, if I may say so myself. Which I may. But all of it, everything I say or write or do, comes through the filter of a father trying to do the best he can for his daughter, even when he fails and fails big, even when the monsters she fights dress like doctors or teachers or politicians, and most of all as a dad who would give up everything in order to give her the life she deserves. For that, I do not apologize.
When I do express myself unclearly, often it’s simply because I am something of a dumbass. But sometimes, I err because I try to fully own the space in which I’m advocating. And I don’t think that’s unreasonable. I watch many, many advocates try to share those spaces all the time, try to navigate the parts of our society where other tribes are greater in number, mightier in presence, more acceptable to the public eye. Disability advocates are accustomed to sharing that space, because that’s the only way it works. This isn’t the Island of Misfit Toys. We don’t occupy tiny, sacred spaces, and we don’t wish to.
So we state our positions, we try to share our perspectives and sometimes we even attempt to speak from places in which we know our feelings and our experiences are uncertain. That’s where we get in trouble, because sometimes, many times, well, MOST of the time, our discomfort or even our unfair opinions originate in the inverse experiences of others. We know better than to compare our experiences. We realize that the Pain Olympics is a stupid, stupid game. But sometimes, in those places we try to claim as safe, we express those broken parts.
And sometimes that expression of our flawed parts turns right around and bites us on our ass parts.
I guess what I’m trying to say here is that disability advocates will always try to occupy our spaces with both feet, and while that’s appropriate, it’s not always comfortable. When it’s uncomfortable, we need to be sure that we haven’t made an egregious error. We are responsible for what we put out there. Words matter, a very great deal. And that’s on us, frankly, to get right.
But the thing we need from you is perhaps a moment to really try to hear what we’re saying. I hate talking about privilege, because honestly it’s a word that I see more and more frequently being used as a silencing tool, which pisses me off. But the thing about privilege is that it’s something that members of the disability community possess very, very little of. That’s true in public accommodations, IEP meetings, hiring, and it’s true in public advocacy. If we knew how to do an Occupy Advocacy thing, we would.
We need the floor every now and then. I promise, we’ll try not to make too big a mess of it. But sometimes the village can be a messy pace. That’s the bad thing about the village, but honestly, it’s kind of the best part, too.
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