Writing Again

Through this experience in Panama, I have found myself less and less inspired to blog, as I'm sure you have noticed. I apologize to those of you reading, and I am thankful that somehow I have still managed to hold your interest in some way.

This week I am beginning the process of writing a paper for an anthropology journal called Interventions. The journal is looking for submissions about disability and colonialism. This seemed a fitting topic for my latest research. My original publication on albinism argued that the condition should be considered a disability in Uganda according to the modern, social definition of disability, which takes into account society and environment. My work in Guna Yala has been looking into the history of albinism and how that condition has been understood from before colonialism until now. What a perfect way to marry the two subjects.

The idea of the paper will be to explain the importance of understanding albinism from a disabilities perspective. From my experience, traditional lenses used to study albinism, such as race theory or genetics, fail to encompass both the medical and social implications the condition has on the individual. I have also found issue with many of the anthropological and journalist writings on the subject of albinism, particularly in Guna Yala. These writings tend to be one of two extremes. Many romanticize the ancient Guna beliefs surrounding albinism, and minimize, if not completely ignore, how those beliefs prevented people with albinism from fully participating in their own society. Contrastingly, other writings vilify the Guna people for their past practices of infanticide against persons with albinism and people with disabilities, without explaining the mentality and societal reasons behind such practices.

This paper will be the first to present the history of albinism from a perspective of disability. I believe it will help others understand Guna people with albinism throughout history, not as a foreign and removed case study of the past, but as people with whom we can relate.

Family of Alejo and Lucianna of Ustupu
Taken By Rick Guidotti, Positive Exposure

So far I have an outline of the paper and a few segments written. I'd like to share a few quotes from the paper to give you a summary of its eventual contents.

"The Guna people of Central America have one of the highest rates of albinism in the world. Around the world, the condition of albinism inspires a fascination among humans that has manifested in a variety of societal responses throughout history, from ostracism to divine reverence." 

"From colonialist times, continuing to today, studies on albinism have focused on the larger implications the condition has on race and genetics. But how do the people most directly affected, e.g. Gunas, and especially Gunas with albinism, understand and deal with the condition? And how has that changed over time?" 

"Over several hundred years, people with albinism faced varying degrees of disability within their society as a result of the changing social interpretation of the condition. While the medical condition has not changed, those born with albinism have faced incredible obstacles to life-participation. The social disability of albinism among the Guna was exacerbated by colonialism but has since been rendered practically non-existent by internal efforts and neo-colonialist influences. Through the history of albinism in Guna Yala, Panama, one can track three significant understandings of the condition within Guna society, which have determined its level of disability."

Overall, I want to present a perspective of the Guna as an indigenous culture which I believe is sadly overlooked by many foreign writers:

"Guna people are not a helpless society that has bended and folded without agency to the demands of external forces. Instead we must look at them as a culture that has molded itself in reaction to experiences with their environment, which include, but are not entirely determined by, interactions with colonialism and neo-colonialism."

Is albinism a disability or not?*

 Depends: on what definition of “disability” you are using and the environment you are referring to.

There are two main definitions of “disability”: medical and social.

Medical Disability

The Persons with Disabilities Act of Uganda uses a medical definition, and defines disability as, “a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participation.”

The medical understanding claims that it is the biological impairment that prevents someone from participating in life events. This view was held for a long time, but has since been replaced in the international community by the social definition of disability.

Social Disability

According to the World Health Organization (WHO), Disability is “any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being”. It then goes on to explain the additional term of “handicap”, which is a “classification of a role reduction resulting from circumstances which place an impaired or disabled person at a disadvantage compared to others”. In other words, it is not always the biological impairment, but sometimes the environment that one lives in, that determines someone’s level of participation.

This definition admits that functionality is related to technology. For example: someone born without the use of their legs is still able to attend school and hold a job, provided there are wheelchair-accessible schools and businesses.

In both the medical and social definition of disability, there is recognition that disability is the prevention of participation in life events. Medical blames the condition, while social acknowledges that one’s physical and social environment can be just as limiting, if not more limiting than a medical condition.

Is Albinism a Medical or Social Disability?

The condition of albinism affects vision and limits melanin production. Without any assistance, this means that a person who has albinism is medically disabled in so far as they cannot see well and the amount of time they can spend in the sun is restricted. But, with the use of visual aids and protective clothing and sunscreen, someone with albinism no longer meets the criteria for medically disabled.

However, in the country of Uganda, and many other places around the world, people with albinism are prevented from participating in normal life activities. Some are killed at birth, many do not attend school, and most cannot find employment. The reason for their exclusion has nothing to do with the fact that they have poor eyesight and cannot produce melanin. Instead, the reason people with albinism are unable to participate fully is because of the social attitudes people in Uganda have against the condition of albinism.

For this reason, albinism in Uganda is very clearly a social disability.

What does this mean for Ugandans who have albinism?

Since the Persons with Disability Act of Uganda does not recognize social disability, albinism is not considered a disability. This is problematic for a number of reasons. Without the recognition of disabled, people who have albinism cannot access crucial protection and services under the law.

For example: If a person with albinism is fired from a job because his/her employer says their condition is scaring away customers, there is no way to accuse the employer of discrimination. People with albinism, though rejected in similar ways as physically and mentally disabled persons in Uganda, cannot access resources and programs that have been developed specifically to combat social rejection: i.e. affirmative action.

Is albinism the only condition like this?

In Uganda, there are other groups that are also left out because of the use of a medical definition for disability. People who have sickle cell anemia and little people are two other groups that are prevented from full participation because of negative social attitudes related to their medical condition.

Currently, people with albinism in Uganda are working with disability organizations to petition the government to broaden the category disabled under the Persons with Disabilities Act. The hope is to amend this definition by the end of 2012.

In Conclusion

Albinism is not a medical disability, provided there is access to visual aids and protection from the sun. Albinism is a social disability in environments where people discriminate and prevent those who have albinism from participating in normal activities.

Sources

- WHO “Standardization in measurement of impairment, disability and handicap, as consequence of disease.” Voorburg, Netherlands. 1983

- Act 20. Persons with Disabilities Act, 2006. Acts Supplement. The Uganda Gazette No. 47 Volume XCVIX.

Printed by UPPC, Entebbe4 August 2006. 

* This was originally posted on the Discover Albinism Uganda (DISAU) website. Please go check out the website and their facebook page. I will explain in the next blog post about the organization.

Executive Summary of Preliminary Report

After many weeks of not hearing from me, I am happy to inform you that my time of absence was mostly well-spent. I have completed the first of several works about my project in Panama. My first work is a 30 page report to the Uganda Albino's Association. This report is meant to build upon my first paper Oppression Through Omission: The Human Rights Case of Persons with Albinism in Uganda, and to present the people of Guna Yala, Panama as a positive example of how Uganda might change their negative perception of albinism.

Following this report, I will begin writing an academic paper on the topic that will go into more depth about the subject. I also hope to write more blog posts and journal articles investigating the multiple facets of this project.

If you are interested in reading the report, it is available through Google Documents.
I appreciate any and all comments, questions and suggestions you might have. Also, if there is something in particular you would like to see a blog post written about, please let me know. You can leave comments on the blog or you can email me at kllyalln@gmail.com

To give you a sample, here is the Executive Summary of the report:

In the preceding report from 2010, Oppression Through Omission: The Human Rights Case of Persons with Albinism in Uganda, the status of persons with albinism in Uganda was explained as a human rights concern necessitating action of the Ugandan government. The report outlined the medical and social issues facing PWA and defined PWA as socially disabled as a result of commonly held prejudices and discriminatory practices. The paper called for a change in Uganda’s definition of disability in its 2006 Persons with Disabilities Act, in order to incorporate the internationally accepted definition of social disability.

Since 2010, awareness of the issues facing PWA in Uganda and east Africa has spread around the country, continent and world. The killings and illegal trade of body parts in the Lake Victoria region of east Africa have decreased but still continue. In October of 2011, the Ugandan government began working toward changing the Persons with Disabilities Act to include PWA, among other groups. Though the change does not recognize social disability, it has the potential to allow PWA to fight discrimination and access resources as a defined category under the law. However, discrimination of PWA threatens to undermine the importance of this legal change as well as the work of UAA and other organizations working with PWA. For this reason, this report claims social discrimination to be the greatest threat to the livelihoods of PWA.

The population of Guna Yala Panama was chosen as a comparative point of study because of its contrasting mentality towards PWA. Within Guna Yala, PWA are accepted members of society who attend school, hold positions of power, marry, have children, and live well beyond the age of 30 years despite their geographical position on the equator and limited access to resources such as sunscreen, covering clothing, and dermatologists. What makes the study more relative to the problems of Uganda is that the acceptance of albinism within Guna communities marks a significant mentality change that occurred within the last century. The history of albinism in Guna Yala, shows how many communities and a population of people were capable of embracing a group of people once killed and rejected.

This report outlines potential programs meant mimic the conditions that have positively impacted PWA in Guna Yala. The suggested actions and policies of this report are meant to complement and expand on work already being conducted. It is not meant to be a comprehensive plan of action, merely a guide to improving and perhaps redirecting the focus of current initiatives.

Pensive Perspective: Part II - The Pyramid Pit

In Part I, I showed how my commitment to issues of injustice comes from my greatest fear of helplessness. Despite recognizing my inability to stop the greatest tragedies of our time, I would rather dedicate my life trying to change the system than to hide in practiced ignorance of how I affect the world. I have struggled with, and still struggle with, recognizing my position in this world and the large-scale implications of that.

It is not easy to see ourselves when we can no longer be judged solely on how we immediately and intentionally affect those around us. In the end, our position in this world is not determined by ourselves; we are inherently a part of a global system that operates above the individual level. In order to see how I truly affect the world, I had to open myself to a perspective that is not easily digested. It requires humility and an acceptance that much of what I have is undeserved and was/is gained through the denial and oppression of others. This is because I, as a wealthy, white, tall, Christian, physically capable, United States citizen, cannot escape the privilege that inherently comes with those and other roles I hold.

For example: my position now as a successful college graduate, with a Fulbright grant to research in a foreign country is commendable on an individual scale. I worked hard in school, and I earned this grant through the US State Department, which provides me with more than enough funds to accomplish my work. Yet as soon as I back away from my personal experience, I begin to see how my “merit” was given to me as a result of the roles I fell into at birth.

Every action has an equal and opposite reaction 

- Newton's 3rd Law of Motion

It would be naïve to think that the positive positions I have gained have not come at a negative cost to others; have not come through the oppression of those who come from any number of backgrounds not sanctioned by our white, male, heterosexual, wealthy, Christian, non-disabled patrons.

As I have come to learn more about the intersectionalities of my own identity I have begun to see how that has been created and is maintained by a standard world order.

It isn’t easy to look, and it takes a great deal of time and reflection – time I have as a result of my privileged position. I do not claim my perspective to be truth, merely a manner that I currently make sense of the world I see. If you chose to continue reading my philosophical ramblings, I will take you on a journey through the “Pyramid Pit,” as I have come to call it. This metaphor is what I now use to organize my understanding of the human injustices in the world: how they exist and how they are maintained. I see it as relevant to understanding how the evils of the world are justified in the minds of the perpetrators: from war lords, to politicians, to playground bullies. It also helps me to understand how good people can be a part of so much evil.

In short, the Pyramid Pit is the system of oppression that was founded in fabricated ideas of superiority that have become so widely accepted that they no longer require active enforcement.

It is a pyramid because it is based in ideas of an increasingly exclusive hierarchy, yet the multiple facets of identity and ideas of superiority contort and stretch each member of the human species so that the clean structure of a pyramid is shambolic in its form. Instead of clear delineations of power, our identities throw us into this massive pit of human fear and loathing.

Originally created by the musings of the privileged few who fit their self-proclaimed position of authority (typically men of social status), ideas of superiority were flexible to some degree throughout history. But over thousands of years, ideas of human delineation are now a self-propelled system of oppression through shared values that translate almost universally.

The man on top of the pyramid does not need to force those below into their place. Those who embody some aspect of created inferiority validate their existence by pushing their shame on those whose “faults” they can prey upon in turn: “I may not ever be able to see the top, but I can look down on those heads I stand on. I suffer the weight of my sex, but at least I can hold myself above all these races/above those whose bodies don’t function like mine.”

And those who bear the burden of never matching this world’s ideal, turn on one another in self-loathing. Pushed to the point of collapse by the pressure they can never escape, they fight and claw at those they touch. Sure they hate the white, males whose wealth and power they support with their weakened bodies, but that hatred, like those men, is something vague and out of reach, too far above this current position. How can they direct their hatred toward some illusive body when they face the real and physical pain and hunger in their immediate position? So they direct their hate and anger toward themselves and others, as they grab and jerk and pull themselves in the futile attempt to find peace from the pressure.

At the top of this human pit,

a jumbled pyramid of broken and crushed, mangled and bruised bodies.

At the top of this human tower,

above the contorted corpses of the “lesser,”

we find the inheritors of the system. They did not climb there themselves. They never had to come close enough to shove others below. History did that for them. But they do nothing to destroy it, and therefore they maintain and sustain it. If they understood the reality of their position; knew that by just being on top, they contribute to the pain of those below, they would freeze in terror and self-loathing. They are not willing to look where it is they stand. They enjoy their pedestal above the fray and they believe that spot to be their rightful place.  They see the bloodbath and the oppression of others, and they wonder why those others don’t pull themselves up to find the peaceful liberty of their “meritocracy.” They look at their position as a direct result of their own self – ignoring the bloody history of their forefathers. They think this way because it allows them to breathe deep the air they are surrounded by. If they were to glance down on what their self stands upon, they would gasp in horror and choke at what is holding up their bootstraps. They would see that their own two feet stand there because of the millions they stand upon – both those living and the corpses of those their forefathers crushed in order to make this summit. They are above the melee not because they are separate from it, but because they contain it. It is their position that oppresses.

We are all born the same, but we cannot be born equal, for we are immediately tainted by the world we live in. Women are painted with inferiority from the instant their “weaker” form is pulled from their mother. “Blacks” are lessened before they are even conceived, their parents having but one genetic outcome; yet the degree of his or her subservience will be determined later by phenotype.

Yet a few have dared to look up, to look down, and to look outside themselves to recognize the role they play in this war of mistaken values. Those within the melee see their anger and the anger of those around them to be misplaced, and a few of them go beyond to recognize it is the system, not its gatekeepers they hate. For the gatekeepers at the top are also victims, though their suffering negligible. The system has been brilliantly constructed to preserve the ignorance of those who maintain it: Disabled blame the “abled”, women blame the men, white Hispanics blame both non Hispanic whites and blacks, atheist blame the devout. The system is not a ladder but an awful pit of anger and putrid bigotry. Those that hold power without validity develop self-righteousness. And those that have no one higher to blame push the fault back on top of the mass they stand on. They push the blame down or up because no one wants to face the possibility that perhaps some of the fault lies within themselves.

But all below feel the pressure upon them, and those that stand at the highest, feel the fragility of the glass ceiling they stand above.

Those that recognize the pyramid pit for what is it are few and far between. Perhaps that is because this recognition cannot change one’s position. There is no nirvana that can be reached. Those below may stop their grabbing and punching and desperate attacks on those around them because they recognize the futility and the self-destruction of the misplaced anger. This does not mean they are removed from the pressure of the pit and it does not remove them from, or make them immune to, the misdirected attacks of others.

Those above who see and recognize where they are and what they stand upon first must free themselves from the debilitating shock and desire to indulge in their guilt. Guilt is something self-inflicted and stifling. The self-created pressure of guilt does nothing for those who still suffocate beneath the privileged feet.

So what are we to do? For we all stand on the suffering of others.

First we recognize and we admit. By admitting our own weight we relieve a little of the pressure. It may be no more than the weight of a straw, but that may save the back of someone you stand on. We admit to place pressure on ourselves by removing it from those below us who do not deserve their position. We admit that we gained our higher position not by pulling ourselves up, but by pushing others down. And by admitting this, we accept the deserved anger of those who have been denied so that we may succeed. And by accepting that anger when properly placed, we help to stop the misplaced anger that causes people to hate themselves and those like them.

When people stop fighting themselves, they can better support the pressure from above. Then they become united and stop contributing to the system that holds them down.

When we stop fighting ourselves and blaming those below, the pyramid becomes easier to define amidst the pit. And only when we can see the system can we work together towards its deconstruction.

But Why would anyone who stands above want to relinquish that position?

This is what is so genius about the system built on believed superiority: everyone has a position to lose. Most would rather keep their place than risk falling, or have another group climb above. And because the deconstruction of this pyramid will take so much work, and trust in one another, we choose instead to focus on ourselves. We push and grab at the smallest breath of air we can get while we accept the pressure above as a given and try not to think about what lies below.

Despite the implications of my own position near the top, I would rather know the full horrors of the system I can’t help but be a part of, than to pretend it doesn’t exist. I would rather struggle with every breath not to support those above, but to instead lift up those around and me. And I would rather do this knowing full well that I will continue to support  and maintain the system, and I will keep my position above others, as I benefit at their defeat. I chose this because I cannot change the system, but I refuse to insult my fellow human beings around the world by pretending that I am not a part of it.

Pensive Perspective: Part I - Childhood Fears and Reality

This is the first of two posts looking into what drives my research and me as a person. It delves into my personal and imperfect life-philosophy, and borders on self-righteous rant.

So here goes:

As I mentioned in my last post, many people asked me at the NOAH albinism conference if I was there because I had a child with albinism. I deduced that this was because I was not with an older family member or spouse and the only other possibility might be that I had a child who was in daycare throughout the program. The insinuation of the question was that there must be some personal reason that fuels my interest in the livelihoods of people who have the condition of albinism.

Most who asked me seem surprised when I told them that I have no relatives, nor anyone close to me, with albinism. It reminds me of another question I have gotten on occasion: why I am interested in race when I, and all of my family, is white? Several times I have reflected on these questions. Why is it such a shock that I should care so much about these issues? Is the fact that I share this world with people who have albinism and people who are of a different “race” not close enough of a reason to have interest in their lives? The injustice served upon another person is an injustice for us all. From my perspective, these injustices continue because there is something within enough people that blocks their capacity for sympathy.

Killer Bees

When I was younger, my three biggest fears were being locked in a bathroom (warranted by the Victorian-era locks in my home), killer bees (which were slowly making their way up South America and would surely kill us all), and global warming. What these fears have in common is my own helplessness to change the situation.

True, I could do my best to limit my impact on the environment – and I did (hence why I never wanted the balloons when my family went out to eat. I knew that balloon would slip out of my grasp and take off toward our precious atmosphere, be eaten by a bird, who would then promptly die, and then the helium would be released to increase the already broadening hole in the ozone layer). I learned later that most bathrooms have escape windows or at least doors that, if need be, can be taken down by an axe.

The killer bees I guess never really made it to Kentucky, so that left me with the fear of climate change. The thing about this fear, is that no amount of common sense or knowledge ever made it go away.

Air Pollution

I am not going to even justify the maddeningly ignorant belief that somehow we have not destroyed our planet through the incredulous amounts poisons we have created and permanent environmental change we have done. I cannot fathom the degree of sheer willpower it must take to ignore the recent increase in catastrophic natural disasters, and not think we must have played a role.

Deforestation

This change in our climate is horrific to me because there is nothing I, as an individual, can do to stop it. Not only is there nothing I can do to stop it, but there is nothing I can do to prevent my participation in its destruction. I can limit my participation but never remove myself. I admittingly chose to live in a world that requires electricity, fossil fuels and the death of trillions of beings all for the continuance of my one being. To create any positive change in how we treat our environment, It will take the work of either billions of us all working with and trusting one another, or the work of a small amount of people with real power in this world - unfortunately, those people who have the most to lose from such change. The possibility of either occurring is slim to none.

So I am horrified not just because I am affected by that which I cannot change, but because I am a participant in that system of destruction.

Water Pollution

But this does not make me want to stop trying. I recycle what I can. I will walk miles with a piece of trash in my hand rather than throwing it to the side of the road. I will make my showers as brief as possible.

And I will judge those who say “what does it matter?” I will judge those who don’t take the minimal effort to put their cardboard box in the recycling bin rather than the trash bin, which is millimeters apart. I will judge those who leave the water running for 10 minutes until their shower gets hot. I will love these people, yes, but I will judge them for their selfishness in a world where less than 0.5% of our water is potable. And I will judge myself for driving my car when I could walk. I will judge myself for going to the grocery store without bringing my own reusable bags. I judge others and myself because we are destroying what does not belong to us, and we are doing it not out of necessity, but out of want.

No I cannot stop the exponential decline of our planet. But I will sleep better at night knowing that I have done less harm than I could have.

As I have grown older I have come to develop other passions. To see and understand other injustices that make my stomach turn to think of. Pollution is not the only system of destruction that I play a part in; and in the next post I will show how this connects to my interest in albinism and race.

NOAH's Ark

This past weekend, I had the privilege of attending and presenting my work at NOAH's (National Organization for Albinism and Hypopigmentation) national conference in St. Louis.

What an amazing experience.
In one hotel were gathered hundreds of people who are typically the only people they know who have the condition of albinism. This conference is the rare time where parents with children who have albinism find it difficult to spot their child in a crowd. No longer does the white hair make them stand out. The children run around with one another and seem to be filled with excitement, especially the very young ones, who perhaps never knew there existed anyone else like them before their first NOAH conference.

This is a safe place, and I cannot ignore the overall feeling of acceptance and love for everyone at the conference. Even for those of us who do not have albinism, we are a welcome part of the community as advocates. Many of us are parents, siblings or significant others. (I was asked multiple times if I had a child with albinism. I must be getting old. I'll blame it on the haircut).

People came from all over the world: Canada, Uganda, Mexico, Australia, Kenya, the UK, Nigeria, Tanzania, Norway, and other places as well. United by a couple of gene mutations that made many of these people look and feel like siblings despite being from opposite ends of the world.

"Albinism takes away race. 

Take someone from the US, Africa, Asia, put us all on stage and what color are we? 

White. 

Albinism is a unifying denominator" 

- Peter Ash, CEO & Founder of Under The Same Sun

Under The Same Sun is run by people with and without albinism from all over the world

I attended a panel discussion by teens, who answered questions about their experiences growing up with albinism. The group of about 6 young adults ranged in age from 14-16. As they spoke about the challenges they have had to face and are still facing, I was impressed by their maturity. They approached their condition with a degree of humor and acceptance that I would not expect from someone of their age. They are at a time in their life when it seems like everyone is trying to fit in. We all know that teenagers can be cruel and peer rejection can sometimes permanently lower one's self-esteem. Yet these teenagers spoke assuredly, with their heads held high. Yes, they face teasing and ignorance from their peers and even adults, but they have learned how to cope with it in a way that seems to grant them this maturity that one rarely finds in people of their age.

In the next session I attended, parents of children with albinism discussed how to deal with the outside, ignorant world. In this room I observed a range of emotion which seemed to reflect different levels of understanding and acceptance of their child's condition. Some parents spoke with anger, others with frustration and fatigue. And who could blame them? Every day they have to see the stares that their children receive. They have to answer the ignorant and sometimes even hateful questions and comments of strangers: "Why would you dye your child's hair?", "Why would you adopt a white child as a black woman?". They also bear the burden of every parent: fearing what is said or done to their children when they are not around: "Are you human?!", "Hey Albino!!".

Yet some parents seem to have found an acceptance and pride in their child's condition. Yes their child has albinism, and that is nothing to run away from. They will proudly explain their son or daughter's condition to questioning strangers - because that's just one less ignorant person left in the world. And many of these parents are starting to see that rub off on their children. As their child has grown up and watched their parents, they too take a pride and acceptance of their condition, which is very much what I saw in the teen panel.

What a wonderful world to be welcomed into. I can't help but hope that we might be able to unite all people with albinism around the world, so that everyone can know that they are not alone. But the even greater dream that all of us at that conference are working towards, is a world where one doesn't need to be surrounded by others who share a similar condition to feel like they belong.

A Delayed Update

Time sure flies when you're having fun,
and when you are stressing about traveling and presentations.

My June and beginning of July has been packed with wonderful experiences and preparation.
For 10 days my parents and my older sister visited me in Panama. We celebrated father's day and my sister's birthday in the rainforest watching birds and wildlife and on the sands of Guna Yala, rocking away the hours in hammocks listening to the waves. I spent a good deal of time stressing before and during the trip: what if we get stuck in Guna Yala because of storms? what if they forgot we were coming to Isle Tigre? What if traffic is so bad we can't get anywhere?

We hit our fair share of snags, but for the most part, we were incredibly lucky. We had a wonderful time at the Canopy Tower, we walked the historic streets of Casco Viejo, and we made it out to Guna Yala despite Panama Air losing our reservation. All in all I would say it was a success.

My family left Panama the 24 of July and from there I had exactly a week to get ready to follow them back to Kentucky. I arrived in Kentucky the night of the 1st and I will be here until the 13th. From Kentucky I head to St. Louis, MO to present my research at the National Organization for Albinism and Hypopigmentation (NOAH) conference. I am excited to be home for the first time in 6 months while I am also getting anxious for the conference. I want to spend every moment with friends and family, but I also want to be sure that I am well-prepared for this conference.

This will be the first presentation of my current work and it will also be my longest presentation. When I first got in-contact with NOAH, thanks to the help of Rick Guidotti of Positive Exposure, I was not expecting much. I knew that I was late in being added to the conference schedule, so I thought perhaps I would be on a panel and have only a brief amount of time to vaguely mention what I was doing in Panama. Then I was asked if I had enough material for a 75 minute presentation. Um, well, yes. Yes I can talk your ear off for as long as you would like, but the issue is whether or not anyone wants to listen to me to speak that long. I would consider myself quite adept at inserting puns and humor into my public presentations normally, but when presenting on life-threatening social rejection and a history of ostracism, it's a little harder to find the humor.

My presentation will be on my current research in Guna Yala as it relates to my work in Uganda. I plan to explain the situation of people who have albinism in Uganda face and the problems albino organizations are having in addressing those concerns. Then I will use the history of albinism in Guna Yala to show how Uganda might be able to address the problems it currently faces in terms of public perception and rejection of albinism.

It is my hope that this conference helps me to direct and improve upon my research. It comes at a perfect point in my grant period. At this point I have 3 1/2 months left and I feel as though I have hit a bit of a wall in terms of my personal momentum. The questions and responses I get from my presentation, as well as the interactions with other people at the conference should show me where I need to focus my energies and conduct more research. It is my hope that I will be challenged and motivated to improve upon what I have already accomplished, and that I will be presented with new ideas.

For those of you who are going to the conference, I look forward to seeing you there! For those of you who won't be attending, I plan to provide a link to my presentation online so you won't miss out on that.

Roadblock - My Findings...so what?

"And this is important...why?"

EXCELLENT question.
That question that looms behind all that you do, specifically if what you do is research.

Great, good to know, why should I care?
Lately I am having trouble answering this question. I have learned SO much about the Guna people and about how albinism is understood and treated here in Panama and Guna Yala and how that has drastically changed through the past few decades. But now I am questioning what value there is in that information besides the exotic interest value.

When I mention my research people usually seem quite interested in the material. I find a lot of that has to do with the fact that many people I interact with outside of Guna Yala have little to no knowledge about albinism within the human race. I have become a good story teller. I can tell you all about people who have albinism in Uganda and people who have albinism in Guna Yala and how different those two societies treat the condition. Most frustrating though is the morbid curiosity in the huntings that recently began in the Lake Victoria region of eastern Africa. Many react with shock, astonishment. Disturbingly, they seem more entertained than anything.

After presenting my work on albinism in Uganda to a group of peers at Beloit College, a professor explained to me the idea of "death by culture." While the main point of my paper was that people with albinism in eastern Uganda have more to fear from the sun than they do from hunters, the take-away by most of the audience was "Ugandans are hunting albinos". You take an already exoticized population of "Africans" (because yes, they are considered one people by many) and you add a further unknown of "albinos". Mix in some good ol' witchdoctors and you've got yourself a damn fine interest story. And this is precisely what the media and many organizations who work with albinism have banked on. "Save the albinos! Stop the killings by their African brothers!". People seem all too eager to believe that those poor Africans are just so ignorant they hunt their own people; it's in their culture.

What is only mentioned in passing, or maybe not mentioned at all is that these killings only began in 2006 as an economic ploy by a small group of people. Additionally, the purchasers of the potions made by these witchdoctors are incredibly wealthy, paying as much as $75,000 US dollars for what they believe might bring them more fortune or win an election. They are NOT your average east African. MOST Ugandans and east Africans are outraged by the killings. We cry outrage that around 75 people have been killed by these huntings while the majority of people with albinism, a number estimated at 150,000 in Tanzania alone, will not live beyond the age of 30 because of skin cancer.
SKIN CANCER. This death could be prevented or at least staved off for another couple decades with education. With the knowledge to use, and the access to, covering clothing and sunscreen.

But people don't want to hear about that. Death by basal cell carcinoma isn't nearly as interesting as being hunted. Tragically, if people took interest, we could easily prevent the deaths of THOUSANDS of people. But what is missing is knowledge and initiative. By and large Ugandans still fear people who have albinism and many people with albinism have had no way of learning some of the basic ways to prevent skin cancer. As a result, people with albinism in Uganda and much of east Africa are socially rejected and die at an early age (but not by hunters).

The purpose of my work initially was to determine if there was something in Guna Yala that we were missing in Uganda – something that enabled the Guna people to accept albinism; something that allowed people who have albinism to become leaders within their own society rather than feared outcasts. Once found, the task would be to somehow translate that into Ugandan societies.

What I have determined is rather simple: Education and visibility. Gunas were exposed to the condition as a result of their high rate of albinism (1:145). The establishment of schools gave people who had albinism a future. Since they couldn't safely work in the fields or fish as traditionally all Gunas did, they could now become educated professionals: teachers, lawyers, and authors. This success also worked to increase people's exposure to the condition, allowing them to interact with people who had albinism in a capacity that would foster respect.

The story of how people who have albinism have gone from being killed at birth to now, being political leaders is an interesting one to be sure; but what does it have to teach us that we don't already know? The Uganda Albino Association already knows they need to educate the public about albinism and that they need to get more kids with albinism in schools and more adults into jobs.

While this blog is typically a one-way form of communication, I would love to hear from the people reading this what they see as important about this research. Perhaps I need some fresh eyes to see the value in what I do. I would hate to think that I am wasting U.S. tax dollars to learn something we already know in theory when that amount of money could have bought thousands of bottles of sunscreen, and saved a lot more lives.

Getting the (dance) Party Started

One of the many wonderful things Latin America is known for around the world is its music and dance. A little cliched maybe, but think of all the dances and musicians that have come from this part of the world. Merengue, Bachata, Cha-Cha, Rumba, Tengo, Samba, Mambo, the list of dances goes on.

Typical Beloit dance party

I don't claim to be the best dancer in the world. Formal lessons started at 6 and ended at 12 when I realized I was never going to be able to do the splits and my mom was a little concerned about how riskAy the dance teams in high school were. My awkward, nearly 6ft teenage self could barely walk in a straight line without falling down, much less get down. But my alma mater, Beloit College, taught me how wonderful a good ol' dance party can be. In college I would say I could hold my own on a dance floor. A lot had to do with the fact  that I was surrounded by mostly midwestern, white, suburban kids.  As much as Latin America is known for dance, WASPs are very much known for having whatever the opposite of rhythm would be.

One of the host-brothers in Uganda showing how it's done

Both in Ghana and Uganda, I came to understand rather than being an awkward and humiliating contest of swagger which I would inevitably lose, dancing is once of the most joyful and uniting experiences one can partake in. Where there was music there was dancing, and where there wasn't music, someone would make some! Children able to walk could dance and women who had seen most of the years of their life pass by would not pass up an opportunity to feel their bodies alive and moving.  I finally understood what church was all about when I went to an Anglican service in Tamale Ghana. EVERYONE was dancing and singing and being happy for life and what they had. It was contagious and it was uplifting. In the U.S. it seems like people need their dances to be choreographed and planned within a certain structure in a certain place. In Ghana and Uganda, life is a dance, you just have to be open to hearing the music wherever and whenever you are.

Back to my life in Latin America. I was fully anticipating clubs and festivals in Panama to be full of life and dancing. To be honest I was pretty intimidated (going back to me being the tall, awkward girl). Crazy thing is: in Panama, NO ONE DANCES!

Emmanuel practicing

An over exaggeration? Yes, a little. I actually was spoiled to meet a group of guys who breakdance the first time I really went clubbing. (Check out this video of some of the guys in Newton's Enemies) Wow! I thought, not only are guys dancing, but they're better then the girls! Then I realized, my friends and I were the only girls who danced. The more I went out the more I saw the Panamanian women with their stilt-like stiletto heels and their treated hair standing off to the side, doing everything in their power to move as little as possible, less they mess up their perm. Men too, apart from the Bboys didn't seem to have much interest in dancing.

Or maybe they did...

Leave it up to Sam, one of the other Fulbrighters here in Panama, to get the dance party started. We went to a bar in Casco Viejo one Saturday night and we were loving the music, but hating the atmosphere. Though the place was packed, no one was dancing. We said to hell with it and 4 of us Fulbrighters just had our own dance party in the middle of the bar. Apparently that was all anyone needed. Within an hour the whole place was alive and poppin!

Photo by Hood Arts https://www.facebook.com/HoodArts

Another instance was at a different club. Again the music was great but the people were just standing around. "What kind of Latinos don't dance?!" cried Elizabeth. Elizabeth's family is from the Dominican Republic and she had been hoping to find some of the same Latin flavor in Panama. Some Ron Abuelo Rum and few Balboa beers in and 4 members of our group were making our way to the front of the dance floor. If they weren't going to use it, we would!

We danced our asses off and had a blast doing it. You could tell the DJ and MCs liked having people show their appreciation of their music. Similarly, back at Beloit, bands that would come to our school would inevitably have a great time because Beloiter's dance to anything! What is it to an artist if you just enjoy their work silently to yourself? Music, especially live music, is something to be experienced and shared.

Afterward we talked to a Panamanian woman who had been singing and actually dancing with us. She said Panamanian women don't like to dance, but they get jealous of those that do.  We had the attention of the whole club and we were doing it in tennis shoes and sweaty hair.

https://www.facebook.com/HoodArts

Poignant Responses

A few times during my research I have been struck by the responses I am given. The following are a few of the shockingly thought-provoking responses I have been given. Many times these responses would initially strike me as irrelevant or inaccurate, but upon further reflection I would realize the significance of the comment.

In one interview, I was asking an older Guna man and his father about the rejection of persons with albinism and the practice of killing babies with albinism that was common just a few decades ago.

"I hear they kill black people in the United States. Why?"

No, children who are born black in the U.S. are not traditionally buried alive. At first I wanted to say, no you aren't killed for being black in the U.S. anymore and also, what the hell does that have to do with albinos who were killed here? Yes, there is discrimination, but you aren't killed for just being black; also people in the U.S. understand that black skin is just a genetically-based process of melanin production. The Guna's killed albino children because they did not understand what the condition was. But before I could say it, the words got caught in my throat. Guna's who had albinism were killed and rejected based upon widely-held false perceptions of what their physical appearance meant. U.S. citizens who have a higher rate of melanin production (blacks in particularly) are killed and rejected based upon widely-held false perceptions of what their physical appearance means... 

When I asked the head of Nargana, Sailar Iguayoikiler, about the discriminatory words of one man in Guna Yala, he told me:

"Every culture has racists. Look at France"

Even if I find one man who thinks albinos should be "eliminated" I cannot let that completely overshadow the fact that for the most part, persons with albinism are well understood and accepted in the communities of Guna Yala. Evidence of one man's ignorance does not negate the fact that as a whole, the Guna are incredibly accepting people.




In an attempt to comfort a girl with albinism who is teased by her classmates, Dr. Gioconda explained, that in Panama, she is teased by people with dark skin because of her blond hair and light skin, but if they were to go to the U.S. or Norway she would be fine, because

"[In the U.S., Holland and Norway] being dark-skinned is bad"

The truth of this hurt when the Doctor said it. It hurt that this might be a comforting thing for a child to hear. No doubt the 10 year old child could take comfort in the fact that there is somewhere where she would be accepted and her tormentors rejected. But how horrible is that reality? 

These and other words of people have caused me to reflect upon the culture I come from and to analyze the mentality I had initially with regards to the Guna people. These and other humbling realizations have further broken down feelings of foreignness when it comes to learning about this other culture. I suppose we can all find common ground in even our least flattering of traits.

Backward Backwards

After spending so much time in Guna Yala I began to forget the importance of the work I am doing here.

Stepping on the island of Ustupu/Ogubsucun, the most heavily populated island in Guna Yala, I hardly walked a 20 yards without seeing someone with albinism surrounded by family and friends. One buff young man was schooling his peers in soccer outside the Centro de Salud, a stunning girl with flowing blond hair helped her family around the house. Another boy played guitar and sung with his band. On Nargana a young boy with albinism was clearly the ring-leader of his group of friends, running freely around the island. The only worry these people seemed to have as a result of their condition was how to access sunscreen, sunglasses and covering clothing.

In my interviews of people without albinism I was consistently told how intelligent persons with albinism are and how they are typically extraordinary musicians. People admit that not too long ago persons with albinism were rejected and even killed at birth, but that now they are completely accepted in their society. And it shows. People with albinism are teachers, lawyers, famous musicians, and governing officials. They hold positions of power in society while persons with albinism in Uganda are an exception if they are even able to attend school.

Unfortunately, coming back to Panama City has shown me how much more work still must be done. Ironically, I have come to see the highly-developed and wealthy Panama City culture has some “uncivilized “ undertones.

Tuesday, I was invited by Dr. Gioconda to come meet a couple whose daughter was dealing with issues above and beyond protection from the sun. I stood in the examining room and listened to this beautiful little girl’s mother explain how the girl is tortured daily by her Second grade classmates, and how her teacher has done nothing.

Gioconda asked the girl if she had any friends. The girl, sitting on the examining bed quietly shook her head, no, with the tiniest smile of embarrassment. I turned to look at her mom who was looking at her daughter with tears welling up in her eyes, arms wrapped around herself. You could see the mother’s yearning just to hold her child and tell her it was ok. But then you also saw the painful recognition in her eyes that it wasn’t ok, and that no amount of comfort from even a mother can make up for being an adolescent child without a single friend. We even learn that the girl’s own cousin refuses to play with the girl because of her condition.

Gioconda explained to the little girl that she is not so different. That many people around the world have white skin and light blond hair. That in places like the US and Norway she would be completely normal, while the brown and black kids who now tease her would be rejected.

Then Gioconda told the young girl that it was time to stand up for herself. She was first to tell the teacher that she was tired of being picked on every day. And when the kids continue to hit her and bite her and the teacher does nothing it would be time to take matters into her own hands, and that “matter” would be the melanin-rich hair of her torturers.

“Now, biting will leave a mark, so it is better to grab the hair and pull like this. That way it won’t leave a mark”

Besides the lessons in self-defense, Dr. Gioconda set up an appointment for the girl to see a psychologist and wrote a note to the head of the school.

Gioconda introduced me to the parents as an intelligent university student sent here just for this reason. While it is true, it felt like such an empty description. Right now, I have nothing to offer these parents and this young girl whose young life is a nightmare solely because of a slight chemical change in her body that she has no power over. It is so surreal to know that only a few miles north, in the mother’s birthplace of Ustupu, this girl would never have to worry about this sort of rejection.

Many Panamanians stick their nose up at the “primitive” lifestyle of the Guna people, yet this City is full of primitive ideas when it comes to treatment of those who are different. Like the country I come from, Panama City is rife with homophobia, and obsessed with color hierarchy. Within that pool of discrimination albinos are also left to drown in the hatred and ignorance. "Backward" is a relative direction. The more I learn from the people in Guna Yala the more I am convinced that yes, they are facing another direction from the “civilized” world, and that the "civilized" world should learn to turn around.

Back to Business

I have spoiled you all with 4 posts this week, so let them sink in because they will be the last for a couple weeks. Tomorrow I head back out to Guna Yala and will hopefully be out there till around the 13 of May. During this time I will have limited/slow internet access, if any. But I will soaking up information and experiences along with that tropical sun (with minimized UV exposure of course).

Stay tuned for more fun and thought-provoking posts once I return from Guna Yala. If you find yourself jonesing for some Kelly-original prose, feel free to check out the blog I kept while in Uganda.

The reason I am back in the city this week has less to do with the desire to wash my clothes with a machine and much more to do with the serendipitous opportunity of a lifetime (of my relatively short and inexperienced researcher’s lifetime). At the beginning of this week, two incredibly important people to my work arrived in Panama. This Thursday was the opening of an exhibit on Albinism in Guna Yala at the French Alliance of Panama. Featured was the work of photographer Rick Guidotti and the release of Pascale Jeambrun’s book, Les Enfants de la Lune, in Spanish. Rick Guidotti is a former fashion photographer and the founder of Positive Exposure, which works to promote the positive image of people with physical differences. (Check it out, it’s an incredibly beautiful and heart-warming organization). Pascale is a medical doctor and expert on albinism amongst Amerindians, especially among the Guna.

I had previously spoken to both these people before even coming to Panama, and they were incredibly supportive and enthusiastic about my work. Rick talked to me about his experiences and offered some contacts while Pascale shipped me copies of her work all the way from Paris, France. Ten years after coming to Guna Yala together to learn from and photograph Guna people, their first trip back just happened to be while I was here. Call it fate, luck, what have you, I’m pretty damn excited about this opportunity!

The art opening/book release was very successful, with more people cramming into the conference room than there were chairs. (If you are in Panama, the exhibit will be up in the Alianza Francesa building until May 3) But the real reason Rick and Pascale are back is to revisit Ustupu and to bring the photos back to those people who so warmly opened their hearts and homes to them 10 years ago.

On his first trip, Rick was told not to take his camera out; that the Guna did NOT like to be photographed. And it is true that in general it’s not acceptable to start taking photos of random Guna people (hence a lack of people in my photos from Guna Yala). How would you feel if a random foreigner came up to you while you were sitting on your porch and started snapping away? But as soon as Rick began showing his photos of people with albinism around the world, and explaining his desire to share their beauty, women began bringing their kids to him and children were lining up to be photographed! In his photos you can see the pride and the excitement of people wanting to share their life with the rest of the world; and it is a beautiful thing.

On this trip, Rick hopes to meet up with the people he met years ago as well as take more photos. I will continue my interviews and Pascale will look into the commonly-held notion that persons with albinism are born to Gunas with lighter skin. While I feel like an intern who has graciously been allowed to tag along, Rick and Pascale have treated me as nothing less than a colleague. They are both interested in my work and the more that Rick and I discuss our next steps it seems as though our work is melding together perfectly. He too wants to document the experiences of people with albinism living in Guna Yala as a way to show the world the acceptance and success that is possible for people with this condition. He keeps asking me how he can help with my work!  I guess I need to start considering myself a professional.

Our adventure begins tomorrow at 6am or possibly 10am, when we fly from Panama City to the island of Ustupu (Yes, even at this late hour the day before, we are not sure when the plane is leaving).  Rick will only be with us a few days before he travels on to Poland. Afterward, Pascale and I will make our way up the island chain back to Nargana. She returns to Panama City the 3rd of May and I hope to stay on in Nargana for 10 more days. While I don’t know how much research I will be able to do in Nargana, I plan to spend those 10 days just getting to know the community better and lending a helping hand where I can. While I could feasibly go in, get my information and peace out, I want to be able to say thank you to this group of people who have been so willing to help me with my work and to teach me about themselves.

Needless to say there are some exciting developments happening and I hope you will stay tuned to learn more!