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
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Sermon Draft 6/28/09 Inherent Worth and Dignity of All: Do We Mean It? Renée Zenaida Please Note: Sermon drafts are provided to aid in following along, and for those unable to attend. Though the drafts are used in delivery, our ministers may do some final writing and editing after the draft is distributed, or diverge and speak extemporaneously when appropriate to the situation. They’re not intended as scripts. Thank you. 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. ©2009 Renée Zenaida Page 1 of 6 Sermon Draft 6/28/09 Inherent Worth and Dignity of All: Do We Mean It? Renée Zenaida “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 ©2009 Renée Zenaida Page 2 of 6 Sermon Draft 6/28/09 Inherent Worth and Dignity of All: Do We Mean It? Renée Zenaida 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. ©2009 Renée Zenaida Page 3 of 6 Sermon Draft 6/28/09 Inherent Worth and Dignity of All: Do We Mean It? Renée Zenaida 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.