the paralytic and the poor girl: confronting disability in church

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Sunday morning, Claire and I were walking hand in hand up the steps to church. As I went through the door, a woman coming in behind us asked, “Is your daughter left handed?” “That’s a random question,” I thought, but I answered, “No?” “Oh, she leads with her left foot,” the woman said. “OH!” I said, “Yeah, she has spina bifida and her left foot is her strongest foot, so she tends to step first and step up with it.” And then she said it.

“Oh, you poor girl!”

To her credit, the look on her face as the words left her mouth was like she’d like to suck them back in unsaid if possible. I had kept moving toward the table where we make nametags, and she ended up writing her tag next to us. “I didn’t mean to say that like that,” she said. “You’re a beautiful girl.” I smiled at the woman. I don’t think she meant to say something hurtful, and she knew it came out wrong.

Claire and I went in, found seats, and sat down. I started to think about what I was going to say to her after church about what that woman had said.

And then guess what the lectionary text was on Sunday? The one where Jesus heals a paralyzed man after his friends lower him through a hole in the roof of the house where Jesus is speaking.

Little known fact: we parents of disabled kids who go to church are a little bit wary of Bible stories where disabled people are miraculously healed. We spend our time trying to convince ourselves, our kids, and the world that having a disability is just another way of being a person in the world, that people with disabilities are whole and complete, just the way they are, and then we go to church and hear retrograde terms like “crippled” thrown around and stories like that of the paralyzed man used to suggest that maybe people with disabilities are more in need of healing than the rest of us sinners, somehow.

To make matters more awkward, the children’s message was actually a play put on about the Bible story by some older kids. My little blonde piece of sassy perfection was sitting on the front row on the floor watching it. And while I’m sure they did it because slapstick humor is always funny, the play presented the “paralytic” as completely unconscious, constantly being dropped or otherwise accidentally injured by his friends attempting to carry him toward Jesus. It completely removed any agency or really humanity from the man, and made the only actors in the story the friends and Jesus.

Claire loved the singing and the big kids and declared it the “BEST. SHOW. EVER.”

After she went off to children’s church, I paid extra attention to the Bible reading of the story, Mark 2:1-12. And you know what I saw? Everyone but Jesus is focused on the man’s physical body, his disability. Four friends carry the man up to a rooftop, make a hole in it, and lower him down. But when Jesus sees the man, his first words are, “Son, your sins are forgiven.” And Jesus stops there. Jesus doesn’t immediately jump to healing that man’s body. He sees him as no different than anyone else: someone in need of grace and salvation, just like we all are, able-bodied or not. In fact, he doesn’t infantilize the man or take away his agency, but he reminds us that the man is a human actor with free will, responsible for his own sins, as in need of forgiveness as anyone else.

It’s only after some of the crowd starts grumbling and questioning, “who is this guy to forgive sins? This is blasphemy!” that Jesus decides he needs a way to show people that he has the power to give us all the wholeness we need. It’s like he goes, ok, fine, since you guys don’t believe I can heal the important, soul-level stuff, let me give you something you can see. And then he tells the man to take up his mat and walk.

Finally, an insight into this story that doesn’t leave me feeling frustrated with a Bible that reinforces a worldview that sees Claire as somehow less than whole in a way that able-bodied people aren’t. Instead, I see a Jesus who sees us all as equally in need of healing and wholeness. A Jesus who gently rebukes the people who might only look at the physical disability and reminds everyone that the place we’re all broken isn’t a place anyone else can see.

That night at the dinner table, I said to Claire, “I want to talk to you about what that woman said in church, how when I said you have spina bifida, she said, ‘poor girl.’ Do you think you’re a poor girl, or that she should feel sorry for you because you have spina bifida?” And Claire said, “I’m not poor! I’m just different!” We talked about how our bodies are not the reason we love and are loved, but that it’s our hearts and minds that make us who we are to people. We talked about how so many of us are different and need help sometimes. And we reminded her that we love her because of who she is, a funny, nurturing, hilarious little being who takes such great care of everyone around her. Thanks be to God.

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I’m with her. And her too.

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You guys know I’m a yellow dog who’s all amped up for Hillary. I’ve been working really hard for her. But I’ve never really said why.

Honestly, when asked why I’m With Her, I usually want to say “EVERYTHING.” My politics are driven by my most deeply-held values: wholeness, unity, justice, equality, peace. In a world where people seem proud not to identify with either party, I can’t really pretend that I don’t agree with one on basically every issue. I care about women’s rights, LGBTQ rights, the environment, the poor, immigrants, education, and energy. I love Jesus, and I’m pro-choice.

But just like Claire’s diagnosis has changed our lives in many ways, it has changed my politics. My feminism has become bound up with disability rights. I want her to have every opportunity in life. I want her to always be treated with dignity. I want her to live in a world where she is valued as a whole person, where she will never worry about access to employment or healthcare, where she can dream big dreams and achieve them. And there’s only one candidate that can show my girls their dreams can include the presidency and who will fight for Claire’s rights and healthcare. It’s the candidate who has been fighting for children, people with disabilities, and everyone’s access to healthcare for her entire career.

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One candidate has literally mocked people with disabilities. One candidate kicked a kid with cerebral palsy out of his rally: “Protesters get kicked out; it’s actually a mother and her children, one of whom who has cerebral palsy and worries what a Trump presidency would mean for people with disabilities. Supporters kick at the family, including the boy’s wheelchair, as Secret Service tries to escort them out.” His mockery of people with disabilities encourages his supporters to assault a person with disabilities and his family. His presidency threatens the very dignity and safety of people with disabilities, not just because he has promised to take away the healthcare reforms that have helped so many, including our family, but because he fails to set an even basic human kindness example for how we should treat people with disabilities. It shouldn’t shock anyone that he has zero policy proposals to help people with disabilities since he has so few policy proposals in general. (The man claims he will make America great “again” but seems to have very few concrete plans to make that happen.)

Hillary, in contrast, devoted an entire speech to policy proposals that would help people with disabilities. She proposes ending policies that allow people with disabilities to be paid less than minimum wage. She wants Congress to ratify the UN Convention on the Rights of Persons with Disabilities. She wants to improve access to employment and education for people with disabilities. And she wants to continue to improve access to healthcare for people with disabilities.

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Photo credit: Whitney Loibner

When I saw Bill Clinton speak at a rally on Friday, he talked about meeting a young Hillary supporter from Florida. He told Bill that he was a fan of Hillary’s because he had a feeling she “wouldn’t make fun of” him. Bill told him he was very smart. “That’s what they say, but I have a hard time getting through the day,” the boy said. Bill told him his feelings were correct, that Hillary has been fighting for kids like him for her entire career (like when she helped found the still-operational organization Arkansas Advocates for Children and Families), and that while in the Senate she had work
ed on legislation to help people with Autism.

I always knew I’d be voting for my first female president for my daughters. I didn’t always know I’d have a daughter whose spina bifida would turn me into a disability rights advocate. But because of her, I have one more reason to be proud to stand with Her.

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I’ll be at the campaign office today and tomorrow. If you have any time to spare at all, please do what you can to help out. You can even phone bank from home to make sure people know where their polling place is and have a plan to get there and vote. We need all the help we can get! And above all: get out and vote! Even if the line is long. It matters so much.

out came the mama bear

It finally happened. Someone made fun of Claire because of her disability. | erniebufflo.com

It finally happened. Someone made fun of Claire because of her disability.

I was sitting on the couch, drinking wine, folding laundry, enjoying some quiet while Jon supervised the kids out biking and scooting with some of the kids on our block, all of whom are older than our girls, but are generally quite sweet to them. Then Claire and Jon came in the door. “Why don’t you tell your mama what they said?” Jon said.

“Those big girls said my diaper isn’t cool and that they don’t want to hang out with me because they don’t want to hang out with babies who wear diapers. Can I please wear some undies? I want them to hang out with me.”

My face got hot. Claire wasn’t crying. She seemed very matter of fact. “Just a second, baby. Mama’s going to get some shoes and go talk to them.”

I slipped on my wicked good slippers, and in my pjs strode down the street. The two older girls saw me and started running. They knew what they said had been unkind. They ran into their yard. I kept walking calmly down to their house. They hadn’t made it into their houses yet.

“Can I talk to you for a second?”

“We’re so sorry, we got carried away, we know what we said was rude, and we’re sorry,” one said.

“It was unkind,” I said, “But I want to tell you something you don’t know about Claire. Claire was born with a disability called spina bifida. She had a great big hole in her back, and she had to have surgery when she was only one day old. Claire is actually amazing. Claire is one of the strongest people I know. People said she wouldn’t be able to walk and now she walks, and runs, and ride bikes out here with you. Claire is AMAZING. And she wears diapers because of her spina bifida, and NO ONE should ever make fun of her for that, because Claire is amazing.”

“We’re so sorry.”

“Thank you. Can you tell her that when she comes back out here?”

“Yes.”

“Thank you. Have a good night.”

And then I walked back down the street. Claire had sat on the potty and changed out of her diaper when I got home. Jon talked to her about how she can wear undies some day, but she’s got to get better about sitting on the potty, which is something she currently refuses to do a lot of the time.

I sent her back down the street on her bike. “I’m going to go talk to those girls and tell them I didn’t like what they said,” she said. She is still one of the strongest people I know. She stands up for herself. And I will always stand up for her too.

Why we #embracethebif

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

It’s October, which means it’s time for perhaps the most poorly-timed awareness month of all, at least from my point of view. Sandwiched between all the pinkwashing of Breast Cancer Awareness, the purple of Domestic Violence Awareness Month, and the yellow and blue of Down Syndrome Awareness Month, you might see a little yellow, because it’s Spina Bifida Awareness Month, too. Last year, some friends and I got a little annoyed with the way some of our bigger advocacy orgs handle Spina Bifida Awareness Month, often focusing on prevention (something you may or may not really be able to totally achieve, because despite what folks tell you about folic acid, Spina Bifida is not 100% preventable) than on the beautiful, vibrant, varied people with Spina Bifida who are ALREADY HERE. So we started a little hashtag, #embracethebif. We just wanted to show people that life with Spina Bifida isn’t all sadness, pain, and difficulty. In fact, like any other life, life with SB is often beautiful, funny, interesting, and full. In short, it’s just LIFE.

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

Almost daily, someone just starting out on their SB journey finds their way to my blog or twitter or Instagram, and lets me know that even though they are in the dark place of a new diagnosis, kind of freaked out by medical jargon and grim prognoses, just seeing pictures of and reading stories about our ordinary life has given them hope. I remember doing the same when our diagnosis was new. I looked for blogs and images of kids with SB just being kids. And their faces turned out to be a lot more comforting to me than uncertain futures and things like surgeries, shunts, catheters, bowel programs, therapies, delays, braces, wheelchairs, walkers, and all the other things that seemed so huge and freaky when we were staring down a lifetime of them like some sort of loaded gun.

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

Yes, our life does sometimes involve all of those “scary” things, and some seasons are more full of pain, worry, and medical interventions than others. But mostly? Mostly those things are a sidebar to the life we live and love. So, this year, I want to again fill up my corner of the internet with positive, regular-life images of life with SB, because that’s what I think people who don’t know anything about SB need to see. Life with SB is just another way of being a person in the world. In my house, it looks like blonde curls, a deep belly laugh, a stubborn spirit, a love of dancing, a friend to babies, a snuggler extraordinaire– our Claire Bear.

Why we #embracethebif for Spina Bifida Awareness Month | erniebufflo.com

Please consider sharing images of what SB looks like to you– use the #embracethebif hashtag, and let’s show the world that life with SB isn’t something to fear, but worthy of embracing with open arms. If you’d like, you can also submit images to me via my Facebook Page, and I’ll share them throughout the month!

https://www.facebook.com/erniebufflo

 

not something i wanted to pass on

If you’ve been reading for awhile, you’re familiar with the fact that I very nearly died after having my babies and later found out I had a previously undiagnosed heart defect, left ventricle non-compaction syndrome. Further genetic testing revealed that my heart defect was due to a genetic mutation, which led to genetic testing for both Etta and Claire, too. I really really hoped neither one got it, but there was a 50/50 chance they did.

It turns out those odds were exactly right. Etta has the mutation, Claire doesn’t. The good news is, both girls have already had echocardiograms, and we know they don’t have my specific heart defect. But, the mutation can also cause other forms of heart failure, so she will need lots of monitoring to make sure her heart is staying healthy. We see the geneticists later this week, and then we will be referred to cardiology. That’s all we know for now.

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lessons i’m learning in my toddler’s dance class, and a Claire Bear update


In this room full of toddlers in tutus, absolutely no one is worried about their rounded belly under purple spandex. No one has given a thought to her chubby thighs in pink tights. Not a one has looked in envy upon the body of her classmates. Instead, as a boombox plays an instrumental of “Beauty and the Beast,” they giggle and grin. They grab hands and twirl. They hug and spin. They are grace in action, even as they regularly fall down.

Even as I feel my own infrequently-exercised thighs burning as we march with high knees and pointed toes around the room, I’m learning powerful lessons too. And they have nothing to do with poise or pointe, and everything to do with grace. Grace for myself and my perfectly imperfect body. Grace and love for the women around me, that I may see them as hands to hold and partners to dance with, not competition or something to compare myself to. Grace, even, for my toddler when she refuses to participate with the rest of the class on a particularly bad morning.

Six weeks of dance classes with Etta Jane are drawing to a close, and I am happy to sign us up for the next six. My happiness is doubled because this time, I get to sign Claire Bear up too. After a year and a half in developmental preschool, Claire has made a lot of amazing progress. Enough, in fact, that we feel ready to back off on some of her therapies. She’s going to be staying home with Etta Jane and me, and we’ll be seeing her PT on an outpatient basis. I am thrilled to get more time with my girl before she has to start real preschool all too soon, and I know she’s going to love dance class as much as Etta Jane and I do. I talked to the teacher and made sure that it would be ok if she had to wear braces and sneakers instead of ballet shoes, and was assured that she is more than welcome to join the class. Grace abounds. There was a point where I didn’t think our girl would walk, and now she’s ready to DANCE.

Dear me on diagnosis day:

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Over the past three years, there have been many times that I’ve thought about me on our Diagnosis Day, the day we found out that one of the babies then growing in my belly had spina bifida. It was my 27th birthday. We were excited to find out if our twins were boys or girls. We found out they were girls, and we also found out “Baby B,” the “one in the top bunk” had something wrong with her head and spine.  Continue reading