Disability is the elephant in the room.
Talking about disability is awkward. Writing about disability is awkward. Both attempts usually bring about a silence that is…awkward! When people do engage with it, I usually get one of two responses; one from adults:
“I just don’t see you that way.”
And one from kids:
“Miss Hill, I saw you. You were walking so different. It looks funny. You look weird.”
Both reactions make me want to fight hard against being myself.
Sometimes I want to be another person. I spend gobs of mental energy imagining how happy I would be if I was someone else: I covet their gifts, their career, their opportunities, their relationships and assume that my life has less to offer the world.
Sometimes I just try to blend in: I wear trendy clothes and work hard at saying nothing.
Most days, I try to hide who I am.
It’s like I’m holding a deck of cards in my hand, depicting roles I play: auntie, student, librarian, friend that I’d be happy to place on the table, face up, for you to see, but the disability card I hold close while giving you my best poker face. I don’t want to show you this card because:
Having a physical disability that marks each step I take is hard.
Embracing all the ways this has changed me is harder still.
Lord have mercy, but some days I’d be happy to trade cards in my hand which say things like, “What I’ve learned about God in the midst of suffering,” for another card that reads, “What it’s like to have an athletic body.” I’m sorry to admit it, but I’d also entertain a deal where my “character formation” card is swapped for one that reads “normal.”
But, I can’t separate my spastic legs from the rest of my body any more than I can separate the experience from the rest of my identity.
Many of us are taught from a young age that to emphasize a disability is rude and to overlook it is polite. I think both approaches can be detrimental. Disabled or not, we must choose to see each other as whole people.
We must do the courageous work of showing up each day to our lives as ourselves, letting others see our entire hand of cards, bearing our uniqueness to the world.
Enjoy this TED Talk by Caroline Casey. I watched it once and cried. I watched it the next morning and cried again. I hope you find it impactful.
Photo Credit: nbc.com
Wow, Jenny. Just beautiful!
ReplyDeleteThanks for reading Steve. This post, in particular, was hard to write. I feel the invitation to live my life as myself, to quit comparing, and to quit hiding. This is a journey. I hope you are enjoying your own journey in Israel.
DeleteJenny, Steve Wiens introduced me to you and your blogs thru posting them on his FB page. I am so glad he did. Your gut-level honesty and transparency remind me of a deeply passionate and refreshingly honest man I once called friend and mentor who passed in 1997 of the same root disease that took my brother's life in October last year. DaveBusby.com had Cystic Fibrosis. I also have a disability. Steve knows it, but it lurks beneath the surface and really only is problematic to those who know about it when it flares up. How do I join your followers? I am "technically retarded" by the standards of this era.
DeleteThanks for stopping by Rodney! You can either friend me on Facebook or follow my blog through e-mail. At the very top of this page there is a box where you can enter your e-mail address and hit the submit button. You will receive a confirmation e-mail where you will need to click on the link provided to confirm your address and then you will be all set! I usually blog once a week. I'd love to have you join the conversation! Jenny
DeleteJenny, I always appreciate your honesty about the journey. I agree that between over emphasizing and under recognizing disability, there must be a third way--seeing people deeply and as they are in their full uniqueness and humanity. I liked the TED talk too--that woman is a passionate speaker! Great message too.
ReplyDeleteThanks Judy! I'm glad you had the chance to listen to Caroline Casey. I found her to be engaging and thought provoking. The honesty that is within this post was uncomfortable for me to express. Thank God, I'm seeing it bear some good fruit!
DeleteJenny, you're incredible. And I wish you knew just how much you are impacting and changing how the kids (and staff) at STME view people with disabilities! You may not see it, but believe me - your impact is huge. I strongly believe God placed you in an elementary school because He knew you'd have the power, platform and ability to show kids that they don't need to be "scared" of disabled people...and that they're, in fact, just like everyone else. They need/want friends. They need/want to be included. They need/want to be accepted. And most importantly, they will undoubtedly be the most long-lasting, devoted friend who loves you for you - if they're just given the chance. We're so thankful to have you there at STME, both as an employee who works with our kids on a daily basis, but even more importantly, as a Christ-follower who loves on our kids and shows them how valuable they are in God's eyes through your interactions with them regardless of their abilities or disabilities. We're thankful for you, Jenny, and are honored to call you a "friend of the Libby fam"! :)
ReplyDeleteThank you for your lovely note Aimee. I had a sense today at work that I was right where God wanted me and it was beautiful. Thanks for encouraging me; I don't always find my uniqueness, especially CP, easy to bear, and especially not easy for kids and adults to see. I think I'll read this note again when I need to be reminded of why I do what I do. May your home be blessed. Jenny
DeleteWhat a moving and motivating talk! Thank you for sharing! I always love your posts. Thank you for sharing so much of yourself!!
ReplyDeleteI hope I get to see you this week?
Laurie
I will be there on Friday. It will be great to see you Laurie and catch up! I hope the new job is going well. I'm probably having the best start to the school year I've ever had.
DeleteThank you for posting this. Here's our version of the struggle, and I tell people honestly that this wasn't what I ever wanted. www.SmartPeopleAreCoolToo.Blogspot.com - while I dont' struggle with the same things that you do, everyone is fighting. Some are more visible battles than others. Ours is apparent as soon as my daughter opens her mouth or parents start doing the parent talke thing . . . It affects every day. It is exhausting. It is God's will. Sometimes, I even see it as a role He wants me to fill and can value it . . . a little . . . sometimes. You are not alone. You are not your body. I am not my child, nor is the entirety of my identity my parental role. However, it is a part, isn't it. . . . Beautifully written. Thanks again!
ReplyDeleteThanks for writing about giftedness on your blog. It makes me wonder how Jesus felt to have been living with an incredibly insightful and compassionate mind in the midst of many ordinary, struggling people. Have you ever wondered about this?
DeleteWow, you are a brave and inspiring woman. Thank you for sharing your disability card with us - so beautifully and vulnerably. I have my own cards that I sometimes wish I could trade, and your post is encouraging in the struggle to accept all that has been dealt. Many rich blessings to you. xo
ReplyDeleteThank you for your kind words Julie. May God meet you in the midst of your struggle and may you receive the invitation with joy to be yourself.
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