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Pastoral Reflections

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Standing Tall, Feeling Small

19 Sep 2021
Tara Jernigan
ableism, people with disabilities, Spina Bifida
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I’ve been fingerprinted several times, from our international adoption to TSA Pre-Check. There’s nothing like it for making me feel clumsy—my hands are not my own as someone else rolls my fingers this way and that—or for making me feel like a criminal when I’ve done nothing wrong. This latest fingerprinting was for a routine ministry clearance and, admittedly, wasn’t an interruption I welcomed on a busy afternoon.

When I arrived at the address I was given, I wondered if there had been a mistake. I was in a little corporate office park, but the name of the company doing my prints did not appear on the sign. Then I saw that the suite number I had was listed for a different organization: the Spina Bifida Association. That was unexpected, but since a friend had posted on social media the day before that she’d been fingerprinted in her public library, I assumed some sort of arrangement must have been made and forged ahead.

I had actually come to the right place, and was early for my appointment. The fingerprinting agency, I learned, rented space from the Spina Bifida Association and employed its members. While I was waiting, their receptionist told me about housing and job-training options, camps, and social events that the Spina Bifida Association offered in our area. I shared that my only first cousin is an adult with spina bifida, though when he was born forty-five years ago, I don’t think anyone would have imagined there would be an association for people with his condition. Back then his doctors saw no hope for my cousin or for most children like him.

When they were ready for me, a lady in a wheelchair came and escorted me to an office in the back. She was very professional in her dress and demeanor (and had an exquisite manicure that I simply could not reconcile to her mode of transportation). While she entered my essential information into the computer, we chatted a little about life and the awkwardness of being fingerprinted. Then she did my prints and took my photo. There was nothing unusual about the situation at all, except for one thing: I felt huge!

Hers was the only chair in the office. There I stood, looming tall in her seated world, being reminded that the reverse perspective is the daily view for people in wheelchairs. As we look blithely over their heads, they take in far more views of butts and bellies than we would consider socially comfortable.

Standing self-consciously while my fingers were inked and manipulated doesn’t sound like a great window for learning, but it was. I’ve long known that feeling awkward, or even embarrassed, is a fast way to open the mind to assimilate all sorts of new information and recall old lessons more clearly. Standing two feet taller than the world I was in at the moment reminded me of things I had known when I was growing up but had begun to forget in my day-to-day able-bodied world:

People with spina bifida have the same range of intelligence as people without spina bifida. It used to really annoy me when people would ask if my cousin had normal intelligence. He was the first child in a wheelchair to be in mainstreamed classes in our public school, so I can understand that adults back then had questions. Today we know that being in a wheelchair can often signify a physical limitation, not an intellectual one.

Because they appear to be the height of a child, people in wheelchairs are often infantilized. As I made polite conversation and asked necessary questions, I found myself wondering how many clients talked down to this capable young woman just because she hadn’t been able to stand up and shake hands with them. A wheelchair does not strip an individual of his personality, desires, experiences, and opinions. It does not make her less of a living icon of God.

People with disabilities need to be able to live rich and visible lives. Gone are the days when we sheltered the disabled away in institutions, though we have yet to really grapple with how we can really help them find meaningful work, rewarding social lives, and a sense of community belonging. Installing a ramp is not enough to make a church or office building accessible from a wheelchair. Have you ever tried to open a door and push a wheelchair at the same time? It is next to impossible, especially if the doors are heavy or if they open towards you.

The world is built for the able-bodied, mostly for the average-sized male. Every time I stand on tip-toe to knead bread at my own kitchen counter, I am aware that my body is not the industry standard. But standing two feet above everyone else is an apt reminder of what a world built for other people feels like. I was in their space, and it was my turn to feel awkward. In our shared spaces, built for people who can walk, we should do a better job of welcoming those who cannot.

By the time I had my own children in the late 1990s, spina bifida was diagnosed in pregnancy and many of these babies were callously aborted. This horrific waste of human life affects not only the families who abort their children, but the wider world, which will be slower to learn the lessons a visible wheelchair-dwelling community can teach us. Those who find their way into wheelchairs later in life will find fewer mentors who have known the seated life from childhood. Those who live with spina bifida and other congenital disabilities will have a harder time establishing community with one another and acceptance in the able-bodied world.

I may have been a little grumpy going into the appointment, but I left feeling grateful. Not for all my blessings but for having met the good people at the Spina Bifida Association, to have learned more about their work, and to have recalled the lessons of my childhood. Yes, I was also grateful to have had an easy and professional fingerprinting experience, but that was not important compared to the powerful reminder I got that each one of us has a place and a call in this world.

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About the Author
Tara Jernigan

is a vocational deacon at Christ Anglican Church, New Brighton, Pennsylvania.  She teaches Biblical Languages to high school students at Veritas Scholars’ Academy and serves as an adjunct instructor for Trinity School for Ministry. Tara and her husband have two teenagers and one adult son.

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