"How It Feels to Live with a Physical Disability"

By Jill Krementz

A compilation of stories, which were written by the kids themselves with her help.  The book was published in 1992 by Simon & Schuster.  The following story about Francis Smith begins on page 155.

Francis Smith

~Age 16~

If people ever ask me what’s wrong with me, I simply tell them that I was born with a genetic disorder. The technical name for what I have is TC. Some people call it missing bones.

I was born without a chin, and since I had no chin there was not place for my tongue – that just hung out of my mouth – so I had to have a tracheotomy in order to breathe. I had no palate – that means the roof of my mouth was missing, and that had to be repaired surgically when I was about six.

I had no cheekbones, so my eyes were drooping because there was nothing to hold them in place. I had an operation to build them when I was about eight. For this procedure, they used bones from my ribs, because that’s the one part of your body that will grow back again.

I was also born without outer ears. Instead I had what looked like two tiny knobs on either side of my head. To correct this problem, I had five operations in which the plastic surgeon was able to make me a pair by using some of my cartilage from other parts of my body. The only problem is that there is nothing but solid bone connecting my outer ears to the inner nerves which make it possible for a person to hear, so I have to use a bone-conduction hearing aid.

Four years ago, they made a hole in the left side of my head and implanted what looks like a magnet so I can attach a hearing aid onto the tiny disk which is implanted just above my left ear. I was the first child in the Midwest who tried this medical invention. Before they gave me the implant, I used to have to wear the hearing aid on a headband and everyone thought I was a little girl.

Even though I can hear well enough to carry on a conversation, the trouble is that sometimes I hear more than I want to. The small transmitter box which I wear and which magnifies sounds and sends them into my earpiece also picks up a lot of background noise too. As a consequence, I’m very uncomfortable in a crowded room with lots of people talking in the background. And it will make driving a car difficult for me bvecause I"ll have a hard time differentiating between the person who’s directly behind me honking the horn and all the other street noises from farther away.

I’m ninety percent blind in my right eye and I can’t read with that eye at all. I tried wearing glasses but they didn’t help much. Sometimes I wear them when I do sports but that’s only to protect my good eye.

Even though they repaired my cleft palate, I still have a serious speech impairment, as well as an eating impairment. I have trouble chewing because only tow teeth on each side of my mouth – one top and one bottom on each side. The ones in the very back of my mouth – come together when I bite. I can’t eat apples, candy, meat, or most vegetables. As a result, I’m much thinner than I should be and have a hard time maintaining my weight. Solid foods present a real problem for me. One time I ended up in the emergency room at the hospital because I choked on a piece of sausage. It was on Mother’s Day. My orthodontist and my craniofacial doctor are working together as a team to try to align my teeth and, in the process extend my chin. I’ve been wearing braces on my teeth for a year and a half and have surgery planned in the fall so I’ll have an easier time eating. So far I have had at least twenty-five operations, but to tell you the truth, I’ve lost count and so have my parents.

My parents are wonderful. I started living with them when I was two and a half years old. My birth parents were both teachers from Ireland who were traveling in the United States when I was born. They felt they couldn’t cope with my severe medical problems and transferred me right from the hospital to a foster home when I was only a few days old. I was taken care of by an elderly black woman until they Smiths hear about me. What happened is that Betty and Bob, who are mow my parents, went to a seminar that was being held for caseworkers who specialized in placing children. Because Betty and Bob already adopted several children with special needs, they were asked to speak about their experiences. After the seminar was over, the director went up to Betty and said, "I’ve already found a home for one of our children." Betty said, "that’s wonderful, but how could you have done it so fast?" The director said, "It’s you!" And that’s when the director told them all about me and why she thought I would fit right into their family.

Betty and Bob agreed, and I’ve been with them ever since. They legally adopted me about two years ago. They’re the most incredible people you can imagine. They have adopted a total of ten children with special needs. They had one biological child, Andy, who is in his forties, but we don’t know where he is. He fought in the Vietnam War and he’s been missing in action since that time. We know he’s alive, but that’s the only information we have. My dad, who is sixty-six, is retired now – he used to be a mechanical engineer for Magnavox – and my mom just celebrated her sixty-first birthday. The still have twice as much energy as people half their age.

Most of my brothers and sisters are quite a lot older than I am, and a lot of them are grown up, married, and living on their own. There are only five of us living at home. Besides me, there are Robert and Raymond, who are twenty-five-year-old twins, who were both born with serious facial deformities as well as with learning disabilities. They look fine now as a result of multiple operations and they both have jobs. Raymond works at a learning center as a patient trainee, and Robert is a manager of a group home for people with emotional and learning disabilities. Megan, who is twenty-one, is learning disabled and she does assembly work. The youngest member of our family is Ruth. She’s eleven. As a result of severe meningitis when she was a baby, she lost her legs above the knee, a finger on her right hand, and much of her nose. She also suffered severe skin disfigurement. She had such a high fever that it burned away a lot of her skin tissue. She uses artificial legs, and sometimes a wheelchair, to get around.

Four members of our family are living on their own. My brother Thaddeus, who is twenty-seven, was born with a severe case of cerebral palsy and uses crutches to get around. Thad has a degree in psychology and now works as the director for volunteers of Hospice in Fort Wayne, Indiana. Mary is thirty-five and she has epilepsy. She’s married and living with her husband and their three children. Joselynn is also married and has three children. She has asthma. In 1982, my brother Peter, the son of migrant workers, who was born with rickets,, died in an automobile accident when he was twenty. And my brother Jamie, the son of a heroin-addicted mother, is now serving time in prison because of the resulting behavioral problems. But through it all, the good times and the bad, my family has been a close-knit, supportive unit.

My parents have fought battle for medical care, decent education, and social acceptance for all of us. There never seems to be a problem which they can’t face with strength and a sense o humor. For example, just finding a house big enough for all of us was a real challenge. Here’s what happened: We live in a small town in Garrett, Indian, and there used to be two funeral homes. The funeral directors were always competing against one another and there wasn’t all that much business. So one of them bought the other one out. The funeral director who got bought out needed to sell his funeral parlor, but he couldn’t find anyone who needed a house with fourteen rooms and, on top of that, no one wanted to buy a house that had been a funeral home. They thought it was too creepy.

After the place had been on the market for awhile, the funeral director, who had heard about my family, talked to my parents and said, "Why don’t you make an offer of what you can afford to pay?" Even though my parents’ bid was ridiculously low, he accepted it because he wanted us to have the house and put it to good use. As it turned out, besides having fourteen rooms, there are lots of elevators in the back of the house which used to be for bringing the caskets in and out, so it’s totally accessible for anyone on crutches or in a wheelchair. My mother’s favorite line is that "it took a family like ours to bring life into the old funeral parlor!"

Besides the loving, tender care of my parents and my brothers and sisters, my church has been an important factor in my life. I now belong to Bible Baptist Church in Auburn, Indiana. The pastor, my Sunday school teachers, and my fellow church members have been a real blessing, especially their prayer support around the times of my frequent surgeries.

My school has also made me happy inside, but it wasn’t always that way. Today, I attend Canterbury School in Fort Wayne, Indiana, and its academic program is very rigorous and challenging. They have a generous financial aid program and I got in on a full scholarship. My classmates are cheerful, loving, and caring kids. They encourage me and help me with my homework in math and science-related things. Last year, I was the maanger of my basketball team, and this year I’m going to be doing a lot of camera work for the team, videotaping the players so they can see themselves play and improve their strategy. I feel that my classmates accept me for who I am and that I’m in an environment where my intelligence is respected. But as I said, it hasn’t always been that way for me.

Before I switched over to Canterbury, my life at school was a living hell. Mostly I went to public schools. The kids were heavily into Satanic worship, rock music, and word-search games. I wasn’t and as a result I didn’t fit in anywhere. At first, my peers just picked on me, chipping away at my self-esteem with verbal harassing. I felt deeply hurt inside and tried to find an inner strength to get me through the days.

But then life got a lot worse. Spit wads, peashooters, and other makeshift weapons became the rage, the ultimate tools of harassment. Verbal abuse still accompanied the physical abuse. The kids would sneak up on me and launch a spit wad, taking pleasure at my reactions. They called me names. They would snap me on the shoulder with their fingers. My locker was often raided and things were taken from it. Or it was filled with shaving cream.

I felt fear every time I walked into a classroom, the school library, the band room, the cafeteria, and through the corridors. In the band room, they would corner me or lock me in one of the smaller rooms. One day, in junior high, a bunch of students cornered me and began hitting my head against the lockers. Most of the time I felt like a walking dead person. Sometimes I cried. I couldn’t bear to tell my parents, because they would worry about me and I felt I could handle it myself.

Even though I was hurt and scared inside, there wasn’t anything they could do to ruin my schoolwork. When I was sitting in the classroom, I still managed to pay attention and participate and I did my best in the school band because I love music. I made straight A’s in every class and made the honor roll every year. NO matter how mean and violent the kids were to me, God kept me sane. But now that I’m away from what was a living hell, I realize, looking back, that what happened to me is that I was hurt so much that I buried most of my feelings. I have learned to be more outgoing and to come out of my shell. My acceptance at Canterbury has helped my feelings about myself.

I also feel better when I’m out in public – grocery shopping, traveling, stuff like that. I do not mind being stared at by anyone, I just ignore it and go about my business because now that I have so many friends, my self-esteem is like an invisible shield encompassing my entire being.

There has been one other important contributing factor to my well-being – in addition to all the help I’ve received from my family, my church, my new school friends, and my doctors. For the past two summers, I’ve been lucky enough to go to Camp About Face, which was organized by Riley Children’s Hospital. Al the children who go there have craniofacial defects. some have a cleft lip and palate, which is the most common facial defect. Some of the campers have more severe problems such as Crouzon’s Syndrome and Apert’s Syndrome, which are birth anomalies that affect the whole face as well as the shape of the head. It’s the one time of the year when I get to be with kids who have all experienced what I have – the surgeries, the speech difficulties, and the stigma of looking different. This past summer there were twenty-two of us, including my sister Ruth.

The camp is located in southern Indiana, in Bradford Woods, on a big lake. We all stay in cabins and the counselors are really nice. Most of them are college students who are majoring in recreation or child development. Besides playing games and doing the usual camp activities like hiking, swimming, and canoeing, we spend part of each day with various members of the staff from Riley. The speech pathologists work with us to improve our speech, the dentists talk to us about taking care of our teeth, and the plastic surgeons examine us and then tell us how we can further improve our appearance through plastic surgery. Mainly, they ask us if there’s anything that bothers us about our appearance, and if there is, they tell us what can be done to improve it.

There’s a child psychiatrist who talks with us about our expectations and helps us differentiate between those that are realistic and those that aren’t. She also gives us tips on how to handle teasing and build our self-esteem. There are hairstyling and makeup lessons. I didn’t bother with those lessons, because I think people in our society pay too much attention to the Hollywood look. What’s important is what’s inside your heart.

But I did work very hard in the session devoted to ways we could improve our speech. Some things I already knew, like speaking slower so people can understand me better. Trish Severns, the craniofacial coordinator of the camp, who is also a speech pathologist, worked with me quite a bit. She checked out the configuration of my oral structures and the impact they have on my speech. She listened to my articulation and tested me in various ways, like pinching my nostrils while I talked to see if there was air coming out of my nose while I spoke. She talked to me about the speech therapy I had at school and about things the craniofacial team doctors and speech therapists can do to better understand my speech problems, or the nature of my speech, or my speech status. She arranged for me to come into the hospital after camp to have a special speech X-ray called a videofluoroscopy where the doctors can actually see my palate or other oral structures moving on a TV screen while I’m talking. This way they can determine if further surgery will improve my voice.

One of the programs that I particularly enjoyed at camp was Partners Night. There’s a beach party on the lake and some adults with facial defects who have been through what we’re going through now were invited to visit camp and talk with us. I spent the whole evening talking with a guy named John Smyser who, like me, was born with TCS. He’s thirty-five, and he told me that when he was born they didn’t even have a name for the disease. They figured he was a mess and retarded too, and the doctors wanted to institutionalize him. But his parents kept him and did a great job raising him. First, he went to a deaf-oral school but then he was mainstreamed. By the time he was sixteen, he had gone through twenty-six operations and then he said, "Enough!" because by then he had other priorities like debating and track.

John told me all about his job with Pitney Bowes. He’s a specialist in the service department and has sixteen people working under him. He’s been with the company for eleven years. He showed me pictures of his wife and two children and it was obvious that he’s got a great life for himself. His kids don’t even notice that he’s different – they don’t even give it a second thought. He said there was no reason why I couldn’t have a wonderful future. What he told me was, "You just have to go through life saying, ‘Hi, I’m me, and this is the way I am.’ And once people get to know you they’ll say, ‘No big deal!’"

I hope I can return to camp next summer. And I hope Ruthie will return too. We had a wonderful time. I made a lot of new friends. It may be called Camp About Face, but what I really experienced was the inner me.