Category Archives: disability/disfigurement

Off-Kilter: Memoir, Healing, and Linda Wisniewski’s Story

Lynne Murray says:

I forget where I read about this method to aid in healing from trauma but it has always seemed to me to be extremely sensible. The formula is: “Tell people about what happened to you. Do it over and over again. Each time you talk about the experience, it will lessen some of the pain.” A friend who had suffered a childhood of abuse and neglect told me that when he read Mommie Dearest, Christina Crawford’s memoir of a childhood at the mercy of her adoptive mother, movie star, Joan Crawford, he recognized a moment akin to one he went through as a child when he decided, “I will survive this—and escape it.”

I thought about abuse, escape, memoir and healing as I read Linda Wisniewski’s beautifully written memoir, Off Kilter: A Woman’s Journey to Peace With Scoliosis, Her Mother, and Her Polish Heritage. This autobiography is justifiably compared with Frank McCourt’s Angela’s Ashes, one of the best-known memoirs of the last twenty years, although Wisniewski describes emotional rather than physical starvation and emotional chill rather than the literal fear of freezing to death that McCourt endured.

A Time Magazine article describes Frank McCourt’s young life:

What kept McCourt alive then, and would make him as a writer, was his humor and his love of words. “In reality, our life was worse than Frank wrote,” said McCourt’s brother….Malachy. “Insane outbreaks of laughter saved us.” McCourt once said that as a child he dreamed of being a prison inmate in the U.S., for the food and warmth. Instead he became a hospital inmate: he caught typhoid at age 10 and spent three months well fed in a well-heated hospital. The hospital also had a well-stocked library. It was there that he read his first lines of Shakespeare and began a lifetime as a devoted reader.

For Wisniewski, her curved spine became a visible manifestation of a childhood where she could only silently absorb the verbal abuse of a hostile father and the criticism of her distant, self-effacing mother. Wisniewski felt devalued long before the scoliosis diagnosis at 13 classified her as damaged and unworthy.

I have moved through my life off kilter. My left side curves inward. On my right, I have no waist; my right side goes straight up and down. My left shoulder is lower than my right, and my left hip is higher than the right hip. I am about two inches shorter than I would be if I didn’t have scoliosis, a side-to-side curvature of the spine. When I sit, I often feel like I am about to tip over to the left. My spine is curved into a C-shape between my shoulder blades so that no matter how straight I stand, I look like I am slouching.

When I grew up in the 1950s, for some reason I have yet to understand, “having good posture” was a big deal. Perhaps because posture was so often discussed by the nuns who taught at my school, I thought that “good posture” was like having “good morals.” I stood as tall as I could, but by the time I was in eighth grade, my back was visibly curved.

I felt inadequate and even guilty. I thought, surely, if I tried hard enough, I’d be able to stand up straight. I wish I had a dollar for every time someone said, “Don’t slouch, Linda.”

As the best memoirs do, Wisniewski uses evocative details to transport the reader to the pleasures of playing on sidewalks in the 1950s upstate New York neighborhood where she grew up. Her family’s Polish, Catholic culture encouraged embracing, even inviting pain and suffering. I couldn’t help but think that her experience must have been more difficult to transcend because the abuse was internalized.

As a grown woman with educational and personal accomplishments her mother could never have understood, let alone attempted, Wisniewski describes finding physical communion with the buried creativity her mother was never able to express in the act of sewing:

The feel of the tissue paper pattern, the placement of the pins attaching it to the fabric just the way I watched her do it. The chop, chop of the scissors taking me back to the kitchen table that was her cutting board.

Using the broken yardstick she inherited from her mother, now carefully mended. “The yardstick resembles my life; it has broken parts. Nothing has been a straight line from here to there.”

In recent years the internet has helped foster a kind of grassroots self-healing movement of memoir writers, from freeform groups such as story circles to the more formal and/or commercial. Memoir coach Jerry Waxler reviews Alice Sebold’s Lucky, a harrowing description of a violent rape that police told her she was “lucky” to have survived, seeing as how earlier victims were murdered and dismembered. Waxler points out the value of writing in making sense of traumatic events.

Writing breaks down the walls that isolate you from others and it also breaks down the walls that separate you from your own experience. So by telling your story, even about something that makes no sense, in a way the story itself makes it feel more organized, more like it fits in with the way the world works. Look to the storytelling to incorporate these events into your life and keep going.

I firmly believe that writing about our lives is therapeutic in and of itself. Memoir writing provides a framework for going over disturbing life events without being overwhelmed by them.

Cerrie Burnell: Maybe She’s Just the Best Person for the Job?

Laurie and Debbie say:

The Internet and the newspapers are buzzing with the story of Cerrie Burnell, established actress now co-hosting the BBC young children’s channel, CBeebies.

upper body shot of Cerrie Burnell showing her shortened arm

No one is complaining about her work, her acting ability, her manner with children, or how she shows up on TV. She sounds like a perfect host for a children’s channel.

So why is she news? Because she was born with one shortened arm.

Having a shortened arm can be described as a disability (because of all the things that are designed for two-handed people) and/or can be labeled as a disfigurement (because of exactly the responses she’s getting). In this story, disfigurement is the issue–no one is saying that Burnell can’t do the job because of her arm, or that she’s not good at it because of her arm. The people who want her off the show are saying they don’t want (their children) to see it, which very frequently means they don’t want to see it themselves. Since toddlers don’t post a lot of blog comments, we’re not getting a lot of response from the core audience. But everyone who has ever made anything for young children knows that the money, attention, time, and prioritizing all come from the parents, and the parents have a lot to say about Burnell’s appearance.

“There’s a time and place for showing kids all the “differences” that people can have, but nine in the morning in front of 2 year olds is NOT the place! Little overboard on the need for political correctness, perhaps?” says one father.

One point he’s missing is that Burnell’s visibility has the potential to make his kid see a one-armed woman as ordinary, part of life as she knows it. The more kids see, get accustomed to, ask questions about, and interact with, the bigger their world gets.

He’s not the only commenter to use the phrase “politically correct” (a phrase which, to put it mildly, neither of us has much patience with). In this case, however, using that phrase implies a particularly noxious position–i.e., that Burnell was chosen only or at least primarily because she has one arm. The vision is of BBC executives sitting in a smoke-filled room somewhere saying, “Hmmm. Let’s see what young children need. I know! They need to see people with disabilities! Let’s hire a disabled person!”

Somehow, this doesn’t seem too probable. Far more likely is that Burnell was one of the top choices for the job and the BBC executives had a long, difficult internal negotiation that sounded a lot like the arguments going on in the comments section of the CBeebies website: some of them thought it would be good for kids to see her arm, some of them thought it was too disturbing, and some of them thought that maybe the choice should be made based on her personality, her talent, her voice, her manner with children, and whatever other criteria they used to pick the other finalists.

And in that negotiation, somehow Burnell got the job, which shifted the discussion into a wider forum. This also allows people with direct experience to weigh in:

My 3-year-old daughter has a congenital upper-limb deficiency just like Cerrie’s. It’s there at nine in the morning, it’s also there at pre-school, it’s there at the supermarket and it’s there when we go on holiday. Some people stare, some people ask questions and many other people just don’t notice.

We are bringing our daughter up to believe that she can be anything and do anything that she sets her mind to. Not because we are politically correct but because she IS capable of anything and everything. The sheer excitement and delight on her face when she saw Cerrie’s little arm was priceless and just reinforced everything that we have taught her.

What Burnell’s detractors are really saying is that regardless of how good she is, regardless of whether or not most kids like her, regardless of anything except nine inches or so of missing flesh, she shouldn’t have her job. That’s not about political correctness, that’s about civil rights.

What should the BBC executives have said to Burnell? “Sorry, dear, we’d love to hire you, but you don’t have two arms?”

Thanks to Lisa Hirsch for being first with the pointer.