Will bring writing up to 2009 date later...

This was my very serious thought when I was twenty-three and my Mother said she wanted a nice picture of me for a Mother's day present. My Mom and I have different opinions about what looks "nice", but being the loyal and dutiful daughter that I am, I trotted off to discover my niceness in a photographic image. Whenever anyone wants to buy anything in Honolulu but isn't certain where to get it, the logical thing to do is go to Ala Moana Shopping Center. I headed to the mall by the ocean feeling uncomfortably confined. 

Honolulu Headshots was the place that would help solve my gift-giving dilemma. Through the big glass window, I could see the glamorous, color-coordinated models in wool hats tipped sideways and natural-colored scarves thrown casually around their sophisticated regal necks. To prepare for my destiny, I slipped to Maiki food market in the middle of the mall. 

Over orange-ish Thai noodles I thought about the white models at Honolulu Headshots sporting what looked like Fall fashion in New York City. What was their relevance to an Asian and Pacific Island population on a tropical island where wool hats were needed as much as snow tires? In addition, Hawaii is the only U.S. State where whites are only a third of the population and Honolulu has tourists from every ethnic group imaginable. Those mall make-up artists have to really know their 'cheekbones'rather like gourmet chefs who cater to the traditional customs of every foreign palate. 

So, sweetened by coconut milk and Thai tea, I ventured back to the Headshots store where I made my concern clear: I did not want to look like the non-moving two-dimensional women on the wall. I had my own style and I didn't want to look like one of the flattened feminine flock. 

The make-up artist, a woman of Hawaiian/Asian mix with perfectly placed hair,calmly and cheerfully asked if she could do anything she wanted as long as she didn't standardize me. I grumbled, "Sure, go ahead." 'Mom better like this' I grumbled to myself. 

Turns out my fashionable inventor was a Hollywood make-up artist just earning extra money while visiting her family for the summer. Her co-workers surrounded us and murmured, "beautiful, so beautiful." I'll never know if they were speaking of me or of her artistry. 

Mom loved the photo. 

Ten years later frustrated by lack of communication, Mom asks, "Is that all you are? Are you just a two-dimensional photo?" 
The ironic words dared my shallow side to learn to swim in the deep end. In many ways, I share a resentment about the lie the photo tells. The lie that says surface beauty is a substitute for authentic beauty. Real beauty is a verb that won't sit inside a picture frame. 

Images of royalty are symbols of the more noble parts of ourselves; they are not mere visual decorations. King Author's Knights of the Round Table represent the search for the Holy Grail of justice, humility and loyalty, which ironically can only be found by looking within one's self. Of course there is the other side of royalty, the feudal caste system, where abuse of power is the norm. The ugly side of royalty only fools one who gazes superficially. 

My casual acquaintance, a woman doctorate candidate who's student office is two doors down from mine is confused when I tell her that my left hand is partially paralyzed and not useful for typing. "Why, what happened?" she asks. "I was injured in a car accident when I was eleven," I answer. She looks at my Queen photo above my computer and says in bewilderment, "but you're so beautiful, you can't tell from the photo." I laugh, "no, my hands aren't in the photo, how would you know what my hands were like from the photo?" 

She is too puzzled to answer. "Were you eleven when that photo was taken?" I laugh again, but am growing impatient with her lack of thinking. "Of course not, I'm about 23. That's stupid to think I can't be beautiful and have been injured by a car." A light seemed to dawn on my acquaintance's face but she only mumbled, "well, the nerves sometimes show." I've had this conversation as many times as I've been greeted by, "is your injury permanent?" when I sit next to the wrong person on the bus. 

Is it true that for beauty to exist, ugliness must exist as well? Is the perception that aging, injury, and certain physical shapes are ugly related to the perception that youth, uninjured bodies and certain physical shapes are desirable and full of health and vitality? 

Of course. But my beauty isn't skin-deep and my body image is more than other people's perceptions. When I look at my Queen photo I am not surprised that it is me. I know what I look like without make-up, without plastic grapes in my hair and I know what I look like and how I move from the neck down, and I still am not surprised the photo is a photo of me. I am surprised how long it took me to disengage emotionally with the constant stream of debate over the dubious need to see people with disabilities as flawed. 

The picture is Queen Julie (my given name): streetwise and sensitive, wanting to cry over the pain--often exaggerated by ignorance---that she sees in her kingdom. But determined, as was promised to the Lady of the Lake in a dream, to never lay down her sword in defeat. 

The concept of disability is the not just the shadow side of beauty, it is more ominous than that. Disability is about power, cultural power; the power to define and represent oneself; the power to decide one's place in the feudal caste. It was because of her sparkling, indigo eyes that I immediately acted on my University's new Research & Advisory Officer's suggestion that I make an appointment. 

During our semi-private coffee chat she remarked, "that she wouldn't have talked to me two weeks ago because she assumed I was stupid because I was disabled." One could say we were both reducing each other to mere body parts, but who was getting insulted and who was getting paid? 

The concept of disability is more than a clever way in which we imprison ourselves to avoid our fear of personal freedom. There are over 6,061,171,728 people in the world; the concept of disability is part of the governmental policies that attempt to oversee how citizens align themselves and think of each other. For at least 30 years policies in the UN and laws in America and Japan to name two countries, have begun to promote respect for people with disabilities to counterbalance past and current human rights violations. 

The changes in thinking about disability reflect an evolution from a medical model of disability to a social model of disability. Traditional models have considered disability as a medical condition to be cured and fixed (which is sometimes valid). The medical model has been [ab]used in social phenomena as the Eugenics movement or the justification for Hitler's impurity cleansing campaign. The social model of disability considers the problem the architectural barriers, organisational practices and attitudes that prevent people with disabilities from 'normal' activities: the cure to disability is in creating a society that ensures fundamental human rights. 

People with disabilities often cross that line of 'normal' to 'disabled' because of trauma or loss such as war, crime, accidents, environmental pollution or poverty. How one regards disability is often how one feels about kicking someone when they're down (and possibly trying to get up.) 

The broadening of the human rights perspective by international leaders is crucial as the popular definition of freedom at any given moment in time has more to do with who is top dog of the moment and how is that top dog enforcing his values. At the end of the day, whether or not one feels disabled by the label 'disability' [or one's physical circumstances] may have much to do with how many people are actively expressing desires for Affirmative Action, Cultural Diversity or Multiculturalism or plain ole respecting other people. 

In many ways I would like to erase the word 'disability' from existence, followed by eliminating the labels 'gay' and 'white'. But some people will take others mundane power as readily as they restrict their own freedom no matter what words are used regardless of the terminology. I find a divine freedom in writing and performing and I can't think of anything more beautiful than that. 

I'd like to thank Kathryn Maher for editing this collection in between working on her Ph.D. in Sociology and fulfilling her duties as the Royal Counsellor for the Royal House d'Gooba. Kat's support in both roles is priceless. 

The Royal House d'Gooba is a marvellous cyberspace kingdom made of people with disabilities that share cookie recipes and ADA information, while taking on roles in the kingdom. The King, Gerald T. Moore a.k.a. Sir Gerald of Moore :-), wrote of the beginnings of the name 'gooba' for our WEB page 


There is a movie called "freaks." It was made back in 1932 and dang near ruined the director's career. It's about this group of circus people (with real freaks in it.) Little Hans, one of the midgets, is in love with Cleopatra, the regular-sized tightrope artist. Hans is also engaged to another midget, Frieda. Well, Cleopatra finds this business of Hans' being in love with her quite amusing --until she discovers that Han has inherited a pile of cash. She decides to marry him; scheming to do away with him and get her mitts on the money. She's in cahoots with the regular-sized strongman; I think his name is Hercules. Hans and Cleopatra get married, and they have a big circus-style-wedding feast. Someone says that Cleopatra is "one of (us) now," and one of the dwarfs fills a big loving cup with wine. He's walking around the table with it, letting all of the guests--who are freaks' too-- drink from it. Meanwhile, the party guests are chanting (to Cleopatra), gooba-gabba, gooba-gabba -- one of us! One of us! 

I was not the original Queen of the Royal House d'Gooba. I much preferred my independence as a slightly barbaric Mongolian Queen with a loyal and intellectual harem. But, things happen, and I dedicate this collection to the Kingdom.