To The Other Side of Dreaming

the bitter grief of dependence OR I am exactly who you say you want to be good to

dear stacey,

I live in the grey space, a walkie.  I use a manual wheel chair sometimes and would probably still be wearing a leg-brace if it were up to the doctors.  Most times it feels like I am too disabled in able bodied spaces and not disabled enough in disabled spaces.  I am physically disabled, holding the weight of not just access, mobility and isolation, but disfigurement, what it means to have a non-normative (physically disabled) body and a history of freakery.  because of this, I crave other physically disabled people and I feel connection with so many people who have non-normative bodies.  Those of us who have learned the secret art of hiding, not just our access, but our bodies as well, and the unspoken anxious fear of what revealing our bodies could mean—the painful trauma of what it has meant. 

sometimes I don’t know how to build with non-disabled people.  Sometimes I don’t know what to do with the amount of grief and disappointment and sadness I feel.  Sometimes i lose faith.

if I lived the kind of life where I had the luxury of not having to build with able bodied people, my life would look so different (maybe no better or worse, but certainly different).  But this is not the life I have lived, it is not the life I know.   I have always had to rely on the unpredictable, fragility of my relationships with able bodied people.  It is painstaking, exhausting, risky work to bring disability and ableism into relationships; to try and attempt to build and invest in a political ally; to try and shift our relationship out of nice-friend-who-helps-me-sometimes to fierce-comrade-who-understands-ableism-and-access.  or at least, that’s the dream, right? 

The person that I have had to become again and again—that all of us who have to depend on able bodied people have had to become over and over—is hard.  Part teacher, part cheerleader, part counselor, part clown, part entertainer, part mood reader.

There should be a term to describe when allies lead you on.  When they are so excited and “down” to learn about disability justice for the first 6 months.  When they promise that they will “never take away your access,” only to disappear.  When they have no idea what it means when their “help” isn’t there. 

I loop in and out of disappointment and reasoning, anger and compassion, bitterness and shame, over and over again.  My head echoes with a chorus of voices on a reel, singing stories of crushing justifications, transparent protections, denial and blame.  Snippets of a life turned in on to itself.  Snippets of a life lived on the inside.  “Of course, friendships (and all relationships) end and change.”  “People can’t be expected to help you forever, they have lives too.”  “People make mistakes, (shit, I make mistakes!), no one is perfect.”  “It’s ok.  You don’t want obligatory access anyway, that’s not fun.”  “Plus, you should’ve been smarter, you shouldn’t have let yourself get used to it in the first place, it never lasts.”  “You could’ve been nicer, shrank smaller, held your tongue, not asked for or expected so much!”  “And who knows, maybe it’ll mean they’ll be better to the next disabled person they’re in relationship with as they try to alleviate their guilt and validate their status as a “good ally.”  (And because of the need and scarcity that ableism creates that next disabled person will probably take you in with open arms.)  “Well, they’re still a good person, even if they were a shitty ally to you in the end.”  “And you never know, maybe they’ll come back around.  Maybe.”  But maybe I’m just bitter…

Either way, I have to talk myself out of it, get back up and do it again, because there is no other choice, at least not for me.  either way, I only get to stay out on the righteous, tear-stained ledge for a moment.  there’s work to be done, survival to be made.  Either way, I will still be here, planning out my next rest stop, wearing accessible and supportive shoes, wondering if today’s fall on the pavement might finally release me from this never ending cycle of building castles at the sea shore. 

so I guess, here’s to starting over.  again.  and again.  and again.

sigh,

mia

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