Embracing All of Disability
August 8, 2017 | Lauren Galloway, 2017 AAPD Summer Intern
Ever since I can remember, I’ve thought in terms of destinations. How many storefronts to the stoplight? How many turns until we’re home? How many intersections in between me and the metro? I should clarify, this fascination only seems to preoccupy my mind when I’m physically walking somewhere. If I can quantify distance like that in seemingly manageable units, it’s easier for me to urge my legs forward because the distance seems less daunting and there’s an identifiable endpoint to the inevitable aching. Full disclosure: I have spastic diplegia cerebral palsy which for me means my muscles, especially my leg muscles, are incredibly tight and my gait is a little crocked. It also means that walking, sometimes even very short distances, is painful. Much of the time it feels like my muscles are screaming at me to stop and just pop a squat on the street, but if I can tell myself I just have to make it to the next corner, and then to the next and the next, I can trick myself into pushing my body for just a little bit longer.
Honestly, I was a little uncertain about writing this post because I’ve never spoken this publicly or explicitly about the physical strain that comes with living with my disability. All my life, I’ve made it a point to downplay my pain, to deny it, to laugh about it because as far as I was concerned, pain was akin to weakness, weakness that I couldn’t afford to shoulder. From young, I’ve recognized the assumption society attaches to my stilted gait: she’s less than, she’s broken, she’s weak. I figured, complaining about my pain, acknowledging it would do nothing but compound that infuriating first impression. So I ignored it. I stayed silent when my able-bodied friends chorused about their feet hurting after a field trip or a weekend excursion. I vigorously reassured those around me that I was totally fine whenever they asked if I needed to slow down or take a break. I pushed my body as far as it would go and then some because I’d be damned if anybody looked at me and saw weakness.
I don’t say any of this to elicit pity or to harp on how hard it is to live with disability, quite the opposite actually; I’m embracing, in many ways for the first time, that disability is human and deserves to be felt and understood in all the ways human emotions allow. I love being disabled. I love this body. But in an effort to communicate the depths of that love, I often catch myself limiting my shared experience to the positive, empowering, or funny snapshots of disability; attempting to justify my love of this powerful, beautiful, strong, scarred vessel that has carried me through every day of the past twenty three years. If this internship and living with fourteen other disabled people has taught me anything, it’s that my appreciation for this body doesn’t need a justification. I’m learning that it’s okay, vital even, that we share the not so sunny, funny, palatable parts of disability too. The human experience is messy and if disability is ever going to be universally recognized as a valid part of that beautiful mess we have to share and embrace and love all sides of it even the painful and the vulnerable ones.
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Lauren Galloway is a 2017 AAPD Summer Intern placed with Senator Chuck Schumer (D-NY).
