On Disability and Accepting Help

I couldn't keep "proving everyone wrong" and still do all the things I wanted to do with my life.

I'll never forget the glare I received from an elderly man when I stepped out of my car into the grocery-store parking lot one frigid January afternoon. Yes, I parked in the handicap spot, as my placard permitted, and yes, my legs work just fine. Better than fine, actually. It's the cold. Missouri winters aren't kind to my underdeveloped hands and arms. I have poor circulation. A short walk can become quite painful, especially if I'm trying to carry a bag or a jug of milk or push an unwieldy cart through the snow and slush. So when there are several handicap spots available, I sometimes use one.

I have a disability called arthrogryposis multiplex congenita (AMC). It affects people in all kinds of ways, but for me AMC means my arms are short, withered, and not good for much. My hands curve under, which isn't pretty but it gives me some functionality, as if I had little hooks on the ends of these limp arms. I can open most doors with them, and even carry my children, while they're still small. But the weight of the groceries and the painful cold led me to accept some extra help from the blue-bordered parking spot. And an old man drove away thinking I was just lazy.

That moment sums up why I've always been so bull-headed about doing things myself. Why, as soon as I was old enough to choose, I never used adaptive technology. Why "I don't need your help" became my mantra, my way of interacting with the world. Every once in a while, I can see it in someone's eyes. I hear talk about people like me draining our country's already-scarce resources. I hear people suggest that it might be better for us all if babies with disabilities were aborted. I heard a mother once talk about a miscarriage she'd endured years ago. She was sad about it, of course, "but the doctor said it only had one leg, so …" and she shrugged it off like the baby's death was a hidden mercy.

I have so many people around me who support me, who value my presence on this earth and appreciate what I can offer. But every so often, I see hints of this "disabled people are a burden" mentality, and my anger and embarrassment move me to prove them wrong. To show how little I need others. To deny any and all forms of help.

Two years ago, I put my journalism education to work and wrote my first book. I only had one child at the time, but he was (and is) an early riser, so I started dragging myself out of bed at 5 a.m. to squeeze in some writing time. Each morning, I grabbed some coffee and retreated to my office. I slid the keyboard tray out, leaned my chair back, raised my feet to the keys, and typed 500 to 1,000 words. I'm not the fastest typist, so the book was accomplished in little bites. Four months later, my deadline approached, and for once in my life I turned in a project before the due date. But for weeks I'd been noticing some new crackling and crunching sounds whenever I turned my head. A small ache in my back had become my persistent companion as I typed and typed in the curled-up position that allowed my feet to reach the keyboard. I hoped to write many books, but after just one, and before age 30, my body was telling me that I couldn't keep this up. I couldn't keep "proving them wrong" and keep writing.

I swallowed my pride and talked to some local agencies that were excited to help me find and start using assistive technology. I now can control my computer mouse by just moving my head, which means I can sit up straight at my desk—much easier on my sore back and crackling neck. I have a chair that adjusts to my needs, and even a desk that raises and lowers so I can change positions easily as I work. I can type by just speaking, which is a difficult change of pace, but I'm determined to rely on my feet less and less. One of these days I may even have my car modified so I don't have to have one foot on the steering wheel and one on the pedals. Driving like that while nine months pregnant was difficult and kind of ridiculous. Modifications that allow me to drive with my feet on the floor will not only make any future pregnancy easier, but also make it possible for me to drive myself to my speaking engagements more than an hour away. Currently I have no choice but to ask a relative to take vacation time to drive me.

If the world were designed with feet in mind instead of hands, I wouldn't need help. But there comes a point when I must admit to myself, and even to the people around me, that I am not physically built to do what everyone else does, the way they do it, and certainly not without help. I need people. I need help. In fact, allowing myself to be helped is one way I can show love to my family, and set a better example for my kids.

What have I been modeling for my children in those moments when I-don't-need-anyone-else-thank-you-very-much? Determination? Yes. Confidence? Yes. Pride? Also yes. Vanity? Definitely. I've been selfish and short-sighted to refuse the help available to me. I wanted to prove to you, to myself, that I am not a burden. But offering help is not the same thing as being burdened, and if I hope to someday drive my grandkids to the park or travel with my husband after I retire, I need to start being kinder to my body. Just because I can do something doesn't mean I should. I could adopt all the pets at the local shelter … but I shouldn't. I could spend every waking hour cleaning my house, but I shouldn't. My drive for independence is good, and a huge part of who I am, but even good things need to be tempered. "No man is an island,” as John Donne so famously wrote.

There is not a person alive who can thrive without connection, help, support from others. Giving and receiving help is just part of the human experience. It is uncomfortable to expose our struggles, but struggle itself is a bond we share. I've decided to stop trying to be an island, ever since independence caused bits of me to crumble away into the sea.