The Power Of Belonging Series: The First Five Minutes by David Roche

Plan Institute is proud to share the second feature story in our Power of Belonging Series: David Roche's remarkable reflection on Belonging and Difference.

We who are visibly disabled, particularly those of us with facial difference, receive constant signals that we do not belong. They come in the first minutes of initial contact with another person.
Some of the signals: startled looks, prolonged stares, eyes quickly downcast, eyes looking up in the sky, gasps of astonishment, fearful looks from children, random comments and occasional cruelties.

These are constant reminders that we are so different that we do not belong.

I was born with a significant facial disfigurement, a vascular malformation, purple and tuberous, on the left side of my head and neck. Surgeries and heavy radiation therapy further adversely affected my appearance.

When I was a child, I had no doubt that I belonged in my large family, at Our Lady of Grace church and school and in the neighborhood that swarmed with children. My security grew in the presence of adults who approved of and encouraged me and my playmates.

Belonging was easy and often a ritual based on objects outside the self. My baseball glove helped me to belong. I would bring it outdoors and sit with my friends in a circle in the grass. We compared gloves and “seasoned” them by drenching them in corn oil which made them several shades darker.

The dawn of puberty changed things; it took more than a baseball glove to gain a sense of belonging.

At age 12, I went to a Halloween party at Mary McDermott’s house. I thought I was going to get candy apples. What I got instead was my first boy-girl party, and I was wearing a hand me down clown suit. We played Spin the Bottle. Patty was the first spinner because she was considered the cutest and coolest girl in school. The bottle pointed to me. Patty pouted and exclaimed “Oh, yuck. Not you!” before reaching to spin again.

At age 13, I wanted to enter a seminary to study to be a Catholic priest. I went for an interview at Holy Cross seminary at the University of Notre Dame. The priests informed me that I was too ugly to be a priest, that the faithful “would not have respect” for me because of my appearance.

With their announcement, my feeling of being valued, of being “a child of God,” crumbled inside me and I lost any feeling of belonging. I began to feel like a freak, irreparably different from others.

I never talked about my appearance. It was an open secret. I had to try to find ways to belong without acknowledging that I was different or how I felt about it.

I tried the counterculture. During my first marriage, my wife and three year old daughter and I moved into what we called a commune. The main thing we had in common was an admiration for body hair; lip service to vague values did not help to build community.

At another point I joined a political organization with the goal of changing the world. We constantly criticized each other for not living up to the ideal of the perfect comrade; this reinforced the perception that we did not belong because we all were failures.

I found that having abstract ideals in common meant that people were not viewed as people, only as whether or not they lived up to the ideal. In that way, religious and political idealists were very much alike.

Slowly I began realizing that I was drawn to, and felt most myself, when I could see myself as being of service. That was what had drawn me first toward the seminary and later to political involvement.

For example, my attempts at being a hippie with OCD led me to becoming a cofounder of the Childcare Switchboard and Single Parent Resource of San Francisco. I worked there for eight years and began to build an inner sense of being a person of value.

My political work helped me to understand how shared effort and struggle helped to build community, especially when combined with service. I remembered how my father, after his WWII experience and 15 months as a POW in Stalag 17, never lost the feeling of belonging with his buddies.

Later I helped to build the first massage therapy program in a hospital in the United States and volunteered there for several years along with a group of half a dozen others. Establishing massage among the medical profession definitely was a struggle. We felt proud of what we accomplished.

But there was something missing. These activities were still a bit like the baseball glove sharing. I had never came to grips with my facial difference, still had nevereven  talked about it. My wife, Marlena, and I were lovers for six months before I gave her even a brief medical explanation of my condition.

That was the beginning of talking about my face. It continued when I found my way onto stage as a comedian. I joined a group called “Access to Comedy” and began making reference to my appearance in a joking way. I was surprised to find that people, instead of making fun of me, enjoyed this openness.

Still, I resisted. I was indignant when, in my 40’s, a well-meaning librarian gave me a brochure from “Let’s Face It,” an organization for people with facial difference. Not wanting to belong to such an organization, I threw the brochure in a drawer where it stayed for a year or so.

I never ever saw myself as having a disability until Cheryl Marie Wade, the grande dame of disability culture, told me forthrightly that I was a performer with a disability and that I had to come to their meetings. She spoke with such authority that I complied. There, I could be myself. I had found my creative voice and I had found a community. I began to belong.

As a performer, I learned that I was not different. I just looked that way. I started to see that my face is a gift because my challenge is right there on the outside where I have to deal with it. My face is a gift because I was forced to find my inner beauty. I was surprised to discover that everyone feels disfigured or disabled in some way.

In this world, in this lifetime, I am someone who, from certain angles, looks rather gruesome. (I am also kind of cute.) I am someone who has the gift of a strong stage presence, a sense of humor, and being inspiring to others. I have accepted who I am and I strive to use those gifts in service.

Some of what I know now:

I belong among people who are kind and compassionate and creative.

I belong in environments that are beautiful and in places where my hands and feet don’t get cold.

At night I belong in an adjustable bed so I can breathe more easily.

I belong among people who know and value me.

I belong among people who like to touch. People who like to tell and listen to stories. People with a warm sense of humor.

I belong in my cohousing community in the temperate rain forest on the coast of beautiful British Columbia.

I belong in many places around the world because of my work. I belong to audiences but when the show is over I belong to Marlena.

That first five minutes when we get stared at? I finally saw that those were not minutes of scorn and judgment and rejection. It’s just that it takes five minutes to get used to a face as different as mine.

Once I let go of those first five minutes, I began to relax. Then my face was revealed as a gift in another way. I did not see people as fearing and shunning me. I lost my own fear and miraculously, began to see the beauty of other people.

I belong to the human race.

This the second article in our Power of Belonging Series, a monthly series that shares the perspectives of leading thinkers on belonging. To read the first article and learn more about the series and the contributors, click here.

Resources:

About Face International, based in Toronto, is the go to place for information about facial difference.

In the US, AmeriFace is the source of a lot of information and referrals.

Ways of Staring is a brilliant article about staring, its varieties and effects and ways of dealing with it. By Rosemarie Garland-Thomson of Emory University. You need to subscribe to the Journal of Visual Culture to get the full article.
 
Every Crooked Pot, by Renee Rosen, is about a young girl dealing with a disfiguring vascular malformation.

Queer Crips, edited by Bob Guter and John Killacky, is an examination of self-identity as formed by men with dual societally defined identities.

Barack Obama’s life story is very much about finding a sense of belonging.

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