Tuesday, July 28, 2009

Celebrating Albinism Week – With features on Connie Chiu, Yellowman, SPF 80, Carnival Mirrors, later this week...

One night I woke up and said it was time that I do a feature on Albinism for an entire week. I think the idea was fueled by some event (imaginary or real) that brought out a few feelings that have developed and changed over the years. These feelings, and the social contextualization of albinism as a ‘genetic disorder,’ alongside my whole vocation of social activist/advocate, conscious, multi-…, identity, self… has created this concoction.

I remember telling my father two years ago that I absolutely hated having to "explain myself" to every person who had questions about the way I looked. Or, feeling like a genetic weirdo when I was looked at in a funny way. I shared that I have since decided to not conduct anymore learning moments with strangers, and rejoice in their confusion. I told my father stories of people coming up to me in stores, being made fun of, or questioned on things such as if my sister is related to me. I confessed that I was hurt when my friends and family got tired of dropping me off at my house. Or hearing so much the passive, “I don’t see that about you” from quasi-socially just sensitives who want to do me some favor by not seeing what’s in front of them. The bottom line is if you are immediately going to see my skin first, and not even ask for my name, then you just filtered yourself out from any interest I have in you, or teaching you anything.

After saying all this, my father gave me this puzzled look, saddened, and replied “I remember when you were a kid, you used to go to kids and classes and tell them all about it, sorta like you were proud and not ashamed.” 

I think he was hurt by how I turned from some evangelist to this angered hermit of "genetic disorders."

So, right now, I really don’t give two shits about what you, the reader, are feeling right now: sympathy, nervousness, quiet, happy, supportive or whatever about what I just shared with you. The river has done run over this rock, and I’ve now become a smoothed [stone (cold motherfucker)]. Nothing phases me and that’s why I decided to close up shop on preaching to all of ya’ll…

But wait… the irony of it!!

Bottom line is that no matter what I do or say, the issue exists… perceived or otherwise. In the end, it’s all about how I deal and I’m not really interested if you actually learn anything or not. I’m doing this for myself with an educational opportunity for all of you as a bystander. In the end there are two things I want you to know from this entry.

1. I’m conducting a test or experiment on ‘representing’
2. The anger and disconnect you may sense from me right now is part of this experiment, and I really want you to process this out for yourself.

So, the experiment is that I want to present albinism backwards. In the narrative of human history, anything or anyone who was considered outsider were first presented in dry, medical, and generic terms, which allowed the notion of us treating them as different or even cruelly, feasible and acceptable. From the birth of Sociology, to the treatment of people from Black, LGBT, Asian Pacific American communities to documentaries on Hip Hop (I was watching Style Wars and it felt like I was watching Animal Kingdom)… we always always always always present the outsider as the medical or genus specimens. As a result, many of us go through a painful and slow progression to human sovereignty that will always be questioned.

So, the itinerary for Juice’s “Albino-docs” is as follows… today I gave you me. Me in my fed up, angry, annoyed, and pissed off lens of what albinism means and has affected me in an emotional sense. Hopefully next up you’ll get a chance to see some ‘great moments in ablinism’, then ‘bad moments in albinism’ and then we’ll end it with the genetic, medical, generic. I can top this off, with some retrospect on this entire experience… putting this out there for you to read.



Cindy Juarez Bustillo said...

...like for real for real...i enjoyed this so much and I can't wait to read more....
not out of sympathy or blindness, but out of my respect for you as a person...
kudos to you for writing it out...not for anyone else, but for yourself.

Vilma said...