Inherent Worth and Dignity of All: Do We Mean It? a Sermon by Renée Zenaida at the Unitarian Universalist Fellowship Gainesville, Florida 2009 June 28

Sermon Draft 6/28/09 Inherent Worth and Dignity of All: Do We Mean It? Renée Zenaida

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Inherent Worth and Dignity of All: Do We Mean It? a sermon by Renée Zenaida at the Unitarian Universalist Fellowship Gainesville, Florida 2009 June 28

You can’t see the wind.

That’s a given in the way “we” experience the world. Who are “we”? We are the majority, all experiencing life in different but similar ways. We build our lives, and our world accordingly. But there are others. If tomorrow I wake up in a country where everyone is 7 foot and above, I’ll be at a disadvantage. Thermostats are going to be way too high; I’d need a ladder to put a cup back in a cupboard; chairs would leave me hanging. I, with the help of some of my tall friends, would have to make accommodations. A special chair. A chain pull to turn on a light.

If it turns out I’m not alone and that there’s a population of similarly challenged folks, the powers that be might be persuaded that accommodation needs to be made on the public side. All elevator buttons would be where majority and minority folks could reach them.

The Americans with Disabilities Act sanctifies inclusion. And it has brought about wonderful changes. I remember when wheelchair ramps were a rarity. No more. Now directional signs include Braille. American Sign Language is becoming common. And children with physical and/or learning challenges are mainstreamed in school, included rather than excluded.

It’s good public and private policy. George Washington Carver said that “How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life, you will have been all of these.”

Making it into this world comfortably within the bell curve doesn’t guarantee that some accident of fate or bout of illness isn’t going to affect you or a loved one.

But it gets complicated. The spectrum of disabilities or challenges is possibly infinite. The ones we can see, can somehow quantify, such as blindness or lameness, are easier to empathize with than disabilities or challenges that we find difficult to perceive. Autism Spectrum Disorder is an excellent example.

“Autistic kids are just brats.” I was outraged by that Shock Jock’s comment. But I realized I didn’t know much about autism at all. A number of years ago, when it was the topic du jour for awhile, I paid attention. Formed some opinions. And didn’t think about it much. I was even suspicious of the sudden explosion in Asperger’s Syndrome diagnoses. There has been some controversy over whether it deserves a separate classification or whether it only marks a level on the autism spectrum, that of high functioning autism. I wasn’t sure whether or not it wasn’t some mania to label the really smart kids, who have social skills difficulties, with some kind of disorder.

Turns out they are the really smart kids with social skill difficulties. It not that simple, of course. The autism spectrum is mind boggling, it ranges from individuals who, throughout their lives, interact with the world around them in only the most rudimentary ways to highly successful engineers whose peers overlook a quirk or two. The variation is compounded by the level of support individuals receive.

Temple Grandin, who holds a Ph.D. in animal science and has written multiple books on autism and animal behavior, began life on the really scary end of the spectrum. But her mother was hell bent on keeping her out of an institution. She worked with Temple, she worked hard. Other caretakers have worked as hard and harder, and the results still vary widely among individuals.

What you do find throughout the spectrum, is a way of viewing the world that is startlingly different from the way “we” neurotypicals, experience the world. Neurotypicals are born with the capacity to flesh out the picture, and start piecing the world together early on. Leaf. Branch. Tree. The categories occur to us so early on that they feel like they’ve always been there. Neurotypicals see the big picture. Autistic folks only see the details. Imagine if you looked at your television screen and saw every pixel…and then had to think up and develop categories and sort the pixels according to whatever criteria you dreamed up--and then had to figure out what you were seeing.

You’d be wrong a lot of the time. Temple Grandin talks about her early categories for cats and dogs. Dogs were big. Cats were small. Then her aunt bought a Chihuahua. She refined her categories over and over again. Do you remember a time when you didn’t “just know” the difference between cats and dogs?

There are drawbacks to the neurotypical way of seeing things. We miss stuff. In experiments testing people’s attention to detail, subjects were told to watch a basketball game and count the number of passes. During the game, a woman wearing a gorilla suit walked onto the court, beat her chest and walked off. Fifty percent didn’t notice. Subsequent tests proved they did see her, but she wasn’t what they expected to see. The normal brain discarded the information. Commercial airline pilots in flight simulators failed to “notice” a commercial airliner parked on the runway. A quarter of those tested landed right on top of the plane. 1

1 Animals in Translation, Temple Grandin

On the extreme other hand, factories are hiring autistic people for quality control. A tee shirt factory hired a team of autistic people to inspect shirts as they come off the assembly line. While neurotypical employees have trouble discerning even obvious differences from shirt to shirt; the autistic team can detect flaws at a nearly microscopic level.

You can’t see the wind. Okay. I can’t. But I’m beginning to wonder.

Autism research is proliferating. Understandable because autism is the fastest growing developmental disability in the United States with 1 in 150 individuals currently somewhere on the autism spectrum.

My understanding of what we know so far is that the neocortex is normal; however, in autistic individuals, the wiring is faulty. Or different. Faulty implies there is something wrong with how autistic folks experience the world.

An autism culture is growing. Autistic art, poetry and music are blossoming. People from all along the autism spectrum are looking around and thinking, you know, there are a lot of us. Some are even talking about instead of autistics working so hard to fit in, the majority should just make some room.

It’s middle ground that I hope for.

Behavior is often the only indicator an outsider has that there’s something “different” about an individual. Language, the complex framework that helps neurotypicals keep the big picture in tact, comes very slowly to the autistic child.

In The Siege, Clara Claiborne Park, writes about the first eight years of her autistic daughter’s life, Jessy. At age four, Jessy knew about 31 words. But they were not a working vocabulary. She’d learn a word, then perhaps never say it again. Putting the words together was beyond her abilities, at age four. She improved dramatically though slowly, but language has never become second nature for Jessy.

In an epilogue to her book written when Jessy was 23, Park writes “Anybody who hears Jessy speak more than a word or two realizes that something is wrong. She has learned English as a foreign tongue, though far more slowly, and she still speaks it as a stranger. …Autistics vary widely in the extent of their speech deficit, as in other measures of retardation. Fifty percent of them do not learn to speak at all, and most autistics who function as well as Jessy speak far more fluently and idiomatically than she.”

Repetitive behaviors are common, sometimes obsessive. They provide comfort and order in a world so saturated with details that chaos reigns.

Inappropriate social behaviors, personal questions, speaking out of turn, shouting, even hitting stem from the language deficient, but also from a state of apparent emotional disconnection, and an inability to read nonverbal communication--facial expression, body language.

Acute sensory sensitivity can trigger a full range of behaviors. Sounds can be excruciating. Frightening. Touch. Overwhelming. Taste. Disturbing. Smells. Debilitating. The waistband on a pair of shorts can be unbearable. The sound of an air conditioner clicking on in the next room can drown out all conversation in this room.

We’re used to stories about how a deficit in one sense will be balanced with extreme prowess in another sense. Someone who is blind develops an extraordinary sense of hearing. Grandin writes of a severely dyslexic colleague who can hear the radio when it’s turned off. She’ll announce that NPR is doing a bit on lions, they’ll turn on the radio, and voilà, lions.

Behavior. That’s one of the places it can get hard to honor and affirm another’s inherent worth and dignity, isn’t it? Most of us have invested a lot of time and effort in learning the unwritten social rules of “civilized” life. It’s how we control our world. When someone violates those rules, gets in our face and messes up the big picture of how things work, sometimes we see impending chaos. That results in behavior too. People ignore. Cajole. Talk more loudly. Aim corrective glares.

I don’t know what disorder was behind this one fellow’s behavior, or even if it was disorder or affectation. But I was up here, speaking, and there was this guy gesturing dramatically, singing loud, shouting out comments. I’d seen him before, talked to him a bit. But that day, I was up here “speaking.” That makes me kind of nervous, you know? And he was back there waving his arms. An usher, perhaps noticing my distraction, tried to guide him to a seat. He took off running. Then he ran back in. Others tried to redirect the fellow out of sanctuary. He bobbed and weaved. All the while I’m up here thinking “what do I do, what do I do.” I chose to do nothing, to ignore. And I’m still not sure what I might have done differently. Invite him to sit up front, include him in the service. But I do wish I’d taken more time to listen to him.

Jan Tucci, one of our members, has a younger brother. The doctors have never diagnosed any particular disability, it’s just that at some point, early on, his development slowed way down. He’s been teased by some, and he’s had some amazing friends along the way. Jan is a loving, caring sister for whom “making sure that Danny is okay” is always a priority. I asked her what people should do.

People need to be patient, she told me. Danny collects cans. Sometimes he wants to tell people about it. So he’ll walk up to you, and get a little too close, and then, a little too loudly, he’ll tell you that he collects cans. And where. And he’ll tell that the people who throw the cans out are slobs, but they end up making money for him. You can ask a question. What are his favorites? Or not. But people should be patient, and listen. He just wants to tell you his story.

You can’t see the wind.

Sometimes the big picture has big categories. We talk about diversity in terms of cultures, African American, Asian, black, white, rich, poor, neurotypical, autistic. But the angel is in the details. Each one of us is utterly and completely unique. When we coalesce, we form the human body. For the organism to succeed, each must be allowed to function to his or her highest ability.

What you do matters.

Pity cripples. Love empowers. Yes, special needs children and adults do need help to succeed. But we lose out if we only see ourselves in the helper role. Never doubt that the person you’re helping has as much to give as you do.

Earl the Pearl. I don’t know Earl very well, but people have told me a lot of stories about him. He’s autistic, and he has other developmental problems too. He’s 20 now. Tall. Lanky. I met Earl at my wedding, here. My husband, Jiri, had worked with him for awhile. I met Donna, another of Earl’s helpers, only a few months ago, when she told me she could see the wind. They, Earl, his mother and Donna came another time, when they heard there’d be drumming. Earl likes drumming. He likes our fans a lot too. Donna said that people looked at Earl, and she told his mother that they were looking because they could see Earl’s light. It’s a bright light indeed.

Donna is one of the heroes. She left a successful corporate career to become a teacher. Her work with Earl deepened that focus, and she’s off to what she described as the most wonderful job she could imagine…working with autistic high schoolers. She’s a hero.

Jan Tucci is a hero. In addition to being a wonderful sister, it turns out she has a special affinity for working with special needs kids--and going the extra mile, one-on-one attention home visits. The teachers are heroes, and there are more than few of them among us.

Parents and guardians are heroes. If you have a child who has not been diagnosed with any disability or challenge, read The Siege and books like it…so that you’ll know how much more difficult it could be. If you have a child who has been diagnosed with any disability or challenge, read The Siege and books like it…so that you know you’re not alone.

The children and adults who live with challenges of so many kinds are heroes. It takes a lot of determination and effort to communicate when the world isn’t set up to be receptive to you.

School special needs programs are continually evolving to better serve; and churches are developing special needs ministries, offering everything from specialized religious education programs to respite stays for families and caretakers. Agencies like CARD, Center for Autism and Related Disorders, here in Gainesville, facilitate teachers and community leaders in meeting special needs children and adults half way.

“Out beyond ideas of wrongdoing and right doing, There is a field. I’ll meet you there.

When the soul lies down in that grass The world is too full to talk about. Ideas, language, even the phrase each other Doesn’t make any sense.” 2

This is our field, where we covenant to honor and uphold the inherent worth and dignity of every person. Those are good, neat, controlled words, good words for a document. Living in community, living our principles means getting up close and personal with the inherent worth and getting on a first name basis with the divinity in every person.

Not everyone can or needs to be a hero. But people should be patient. And listen. … and dance in Sarah’s Circle.

2 Jelaluddin Rumi