Tag: disabilities

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My kid has spina bifida. The AHCA is a nightmare bill for kids like her, and pro-lifers should be calling their Senators in droves.

I decided, in light of the AHCA, to research the average cost of health care for people with spina bifida. They call them “million dollar babies” for a reason. The first year, according to an article I found on PubMed, is $41,000. Every year after that is around $14,000. (The first year is the most expensive, usually, because of neurosurgery and NICU stays. I’d bet we racked up more than $41,000 in our first month of life.)
In Arkansas, we had private insurance, as well as Medicaid TEFRA, for which we paid an income-based premium and which we qualified for on the basis of Claire’s disability. It covered 100% of what our insurance didn’t. And there’s a lot that insurance doesn’t cover, but that is necessary to help kids with SB be as independent as possible, like therapies and developmental preschool. In Colorado, a supposedly more progressive state, we still have private insurance, but no Medicaid. We end up paying more out of pocket for our daughter’s care, even though we are privileged to have excellent insurance because my husband works for the university hospital.
I remember when I testified before a committee about Arkansas’ proposed 20 week abortion ban. I talked about how 20 weeks is right around the time that people usually get a fetal diagnosis that changes their very wanted pregnancy into a nightmare. One thing that people are wondering when they get that diagnosis is, can we afford to provide this child with the care she will need for the rest of her life? Will this bankrupt us? It’s a very real consideration. And I have read that 60% of people who receive a fetal diagnosis of spina bifida choose termination.
I’m pro-choice. I support safe, legal abortion care for any reason. However, I also truly believe that there are ways we can help people keep these WANTED pregnancies instead of terminating. And one of those ways is helping them afford the care their disabled kids will need for their entire lives.
The AHCA comes from the supposedly pro-life party. And yet this is a deadly bill for people with disabilities, many of whom depend on Medicaid for their life-sustaining care. This bill will make the answer to “Can we provide this child with the care she will need?” a “no.” I am confident it won’t help, and will in fact increase, that 60% termination statistic.
It also creates new worries for us as parents of a kid with spina bifida. Will she stand to have her coverage capped at some point? Will our insurer say, welp, you’re at the limit, we won’t pay any more for you, and kick her off? Will she be able to get a new policy with her pre-existing disability? Will she be able to work as an adult, or will she have to stay unemployed, lest she get too “rich” for her meager benefits? Will my husband have to stay in his job forever to ensure we keep the insurance we have now, because she might not be covered if we have to switch providers?
If you haven’t already called your senators about the AHCA, please do so. It’s a needless “screw you” to Obama that will cause pretty much everyone to pay more for less coverage, and will literally lead to people dying and pregnancies being terminated. Repealing the ACA and replacing it with this cruel bill helps no one but rich folks who will be getting a tax cut. Please call your Senators and oppose this bill. Today.
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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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inspiration?

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Although I finally closed comments on my “Not a Hero” post, likes and feedback continue to roll in. Nothing I’ve ever written has generated such a response before, and I am so thrilled and humbled. Perhaps most of all, the feedback that has meant the most to me is that of adults with disabilities, who without exception, have told me basically, right on, I’m not a hero, just a person living my life.

And while it may sound counter to my “not a hero” message, I find them, the people who have left these comments and messages, incredibly encouraging. Not in a patronizing way, but in a window to the possible future for my daughter sort of way. Just as I want my girls to know and see strong, smart women out in the world as encouragement, as windows to their possible futures, I want Claire to see normal, everyday people with disabilities to let her know that there are all sorts of possibilities for her life. Possibilities that include meaningful work, deep relationships, fun hobbies, athletics and exercise, and anything else she may so desire.

When we got our diagnosis, I knew nothing about spina bifida, and our doctors seemed to know very little about what we could expect for our daughter, because spina bifida includes such a range of disability and experience. This whole journey has been characterized by a deep hunger for knowledge on my part. I remember finding the blogs of parents raising kids with SB, and just putting a face, a beautiful KID face, to what was at first a scary and mysterious disease gave me so much peace. Now, as she grows, I find myself still hungry, not so much for facts, but for glimpses of what her life might be. And the more I read and hear from adults with disabilities, the more I realize that my hopes for her as a person with a disability aren’t that different for my hopes for my girls as future-women. I want freedom, autonomy, and bravery for them both. I want them both to have the courage to stand up to both sexist and ableist oppression that they may encounter in their lives.

It’s why I related so well to this post, which I found via Rachel Held Evans. The writer talks about seeing adults with disabilities in a new way as the parent of a child with a disability, and finding them inspiring, and in the piece she tries to draw a distinction between that and the patronizing, limiting “inspiration” I addressed in the “Not a Hero” post. I think, as Ellen seems to be saying in her post as well, that the difference is largely a problem with the word “inspiration.” We rightly bristle at the idea that our kids are “inspiring” just for navigating the world in the only bodies they have ever known– that’s no more noble than any of us learning to navigate the world in the only bodies we’ve ever had. But we also, like any other parent, are searching for role models for our kids. Not role models as in Batman or even Olympians, but actual people, whose lives look like their lives. We face a future full of unknowns, and we just want to see that there are lots of possible futures, and they’re good. I’ve heard moms of boys talk about finding good male role models for their sons. As a mom to girls, I feel no qualms talking about my desire for good female role models. And as the mom to a daughter with a disability, I look for the same.

I’m thankful my post has connected me to so many perspectives from so many voices I wasn’t reading before. I’m just starting out, and I have much to learn in order to best raise my daughters to be women in the world.

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my child with a disability is not my hero

IMG_0128When we first began our journey with spina bifida, I didn’t know anyone with SB or anyone whose kid had it. One of the best things that has happened over the last two years is I have found other people who are going through the same thing, bloggers whose kids have SB, and message boards full of parents whose kids have SB. This community has been helpful and informative, but most of all, it has let us know that we’re not alone. Still, some things have become apparent as we’ve delved more into the special needs community that make me uncomfortable, and one of them really crystalized for me yesterday when chatting with a friend who also has a toddler with SB. Basically, as my friend and I agreed, it’s this:

The tendency of parents of kids with special needs and disabilities to say their kids are “heroes” makes me deeply uncomfortable. 

On the one hand, it makes perfect sense. We see our kids go through so much more than most typical children deal with– surgeries, therapies, challenges, and pain, and we see our kids thrive and survive in spite of it all. We’re impressed by their resilience, and we want to express that. Also, in a world that marginalizes and devalues many people with physical and cognitive disabilities, we want to affirm the worth and value of our kids. I see no malice there.

But what concerns me is that calling our kids heroes is just another form of dehumanization and marginalization. Our kids are KIDS, first and foremost. They’re people, human beings, whose value lies simply in the fact of their personhood, not in milestones or hurdles overcome. When we put them on pedestals and call them heroes, we make them something other than human beings. And we give them a standard that, at times, may be hard for them to live up to. They might not always feel like being heroic. Sometimes they might just want to be kids, people, frustrated and fed up and overtired and hungry and in a bad mood and all the other less-heroic stuff we feel from time to time.

Having twins, one of whom has SB and one who doesn’t makes this really apparent to me. Both of my kids are just people, existing in the bodies they were given, facing any challenges that come their way. To borrow a phrase that I learned from Sesame Street*: having spina bifida is normal and natural and fine for my daughter. She’s not heroic for existing in her body any more than anyone else is, because she has always been this way. Calling her a hero is just another side of the coin from feeling sorry for her, and I don’t want people to do either. I want her to have the beautiful freedom to be a complex, complicated human being who both overcomes challenges and makes mistakes, who can be joyful and angry and every other emotion there is, with no pressure to be anyone but herself. She’s no hero, she’s something much more magical and mundane: a little girl, full of untold potential, just like her sister.

*We recently watched an old episode of Sesame Street which featured a young man named Rocco who happened to be blind. He is introduced to Elmo, and when Elmo finds out Rocco is blind, he says “I’m sorry.” Rocco tells Elmo he doesn’t have to be sorry, because being blind is normal and fine for him, just like being able to see is normal and fine for Elmo. I really loved it. Plus, Rocco is a great singer.