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.