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.