“I know I’m chubby, and I know I need to lose weight in order to get the transplant. But I guess, I don’t know... sometimes people call me royito - which is a Puerto Rican fried dough that is white, round and tasty... but at least they want to eat me! They also call me white Crayola, chalk, cotton, ghost, glass of milk, stuff like that... and sabino. But I don’t care too much. I’m in University to study social work and I just want to finish. When I do that then I will see what is next.”
Juleiny is in need of a lung transplant due to the early onset of fibrotic lung disease. She has very recently begun to lose weight and will soon be eligible for the procedure.
“I love the Eiffel tower, I wanna go there. Aaaah it’s so awesome, if I go, I’m gonna bring back a French guy. That’s what I tell my grandma. Be careful, my grandma’s mom maybe is gonna kick you, she has Alzheimer’s, she’s kind of a joker. Everybody has their person, their match. If you love everything and you study the same things, thats your match...When you find somebody that likes everything that you like. My match is someone who likes music, tv, and mechanics. I like to do mechanics. My stepfather, he showed me. My real dad he died when I was 3 years old, and my sister she died when I was 13 and she was 7. My real dad, they killed him. He was selling drugs and they shot him. That happened when I was 3. Now the only father that I have is my stepfather. I don’t see him a lot but when he comes around I hug him.”
Walery has sleepless nights as she talks with the spirits of her father and sister. she lives with her grandmother and great-grandmother while her siblings live with her mom. Her siblings bully her at school. “i take Karate class. i’m the good one of the family, i get the good grades. i’m in boxing class, too, and i play basketball. You don’t know if albino people have been bullied or not, if albino people have been hit or not. This year, i didn’t get hit, but last year i had all these marks on my skin.”
“I was in line at a clinic and a girl said to me, “Sabino, what’s your name?” Oh my God. The little black I have in me ignited and when it ignites I am very black. I told her, “What did you call me?” “Tell me your name?” “No, no, before that.” “Oh, Sabino” “You know what, that’s crap.” “But that’s what it’s called.” “Only idiots with no education say that. A professional would never call anyone Sabino, and you work at a clinic, so you’re supposed to be professional. Sabino is a last name, and only in Mexico. My name is Juan.” Sabino is an ugly word. There are people that hear but don’t listen. It’s not the same thing. God was not unintentional when he made me. Ricardo Arjona wrote a song for gay people called “Let no one see.””
The day I met Juan, I was in awe from the honesty of his words. As the days went by, shock turned into laughter as I was constantly bombarded with quick wit propelled in my direction too fast for me to catch and return. The day I left Juan, we ate a cheese dog together.
“My dad says there’s no future with her, but he sees that I’m try- ing to make it work. He says to let it go. I can’t be alone, I need distraction, or else I only think about her. I close the door, put music on and I imagine her standing in that doorway... Don’t take my picture while I’m crying... I was totally decided to go to university in the United States. My English is Puerto-Ricanish, but its good. Computer Science is super common over there and I have a university in mind, it’s in Boston.”
Ricardito is big. He’s taller than most teens and stronger than everybody. He’s been bullied because of how big he is but was eventually able to use his size to stop bullying. “I fight, but only for love and justice.”
I have Hermansky-Pudlak Syndrome (HPS), a rare genetic disorder that commonly occurs among people with albinism on the island of Puerto Rico. Clinical manifestations of HPS include: albinism, platelet dysfunction, sometimes accompanied by immunodeficiency, colitis, and/or fibrotic lung disease 1. There have been ten different types of HPS identified around the world, two of which are most common in Puerto Rico: HPS 1 and HPS 3. HPS 1 and HPS 3 differ in that those with HPS 1 exhibit more classic symptoms of albinism (lack of pigmentation in the skin, hair and irises), while those with HPS 3 only have an ocular manifestation of albinism (lack pigmentation in the retina). In Puerto Rico, 1 in 21 individuals are carriers for HPS 1, while 1 in 36 are carriers for HPS 3 2.
I have HPS 3. Along with the ocular manifestation of albinism, I have photophobia, nystagmus (pendulum-like involuntary eye movement) and low vision, which means that I am legally blind.
I thank God that, despite my disorder, my parents never treated me like I was different. They never felt sorry for me and never let others treat me with pity. Even so, many people have thought that I am incapable of fulfilling my goals because I am visually impaired and have health issues. I have and continue to prove them wrong. I am proud of who I am and am not ashamed to have albinism.
1. (Hermansky and Pudlak,1959, Gahl et al., 1993, Brantly et al., 2000).
2. (santiago-Borrero et al., 2006, Gahl, 2010)
My parents raised me in a predominantly white suburb of a black city, but it was the Latin culture that taught me. My first words, my mother’s food, my grandma’s counsel, my grandpa’s stories, my father’s song, my manipulative manners, my sister’s eyes, our irreverent whispers in church, the old man that gave me candy, the young man called Piraña, who had very large teeth who showed up every 4 months- stayed for a couple hours and left everyone in the house screaming with laughter. All these things... were so very Latin.
I also grew up enveloped in black. Growing up so close to Washington D.C., it was inevitable. From my best friends to my favorite songs; from first loves to lost ones. These things that encircled me from my baby face to my awkward age and carried me to adulthood were the standard for me - a Latina growing up in a white suburb of a black city that did not know she was anything
else but Latin.
3 years ago I found out that my great-great grandfather was black. My grandfather was brown, tall and slender with light blue eyes. His grandfather was an African man that came to Colombia and stayed for a while. Somehow this heritage was hidden underneath the shades between white and black. It got pushed more towards white and less towards black, until lines blurred and although I am Latina, I am covered in white. Just like my suburb, just like my face, I am not what is exposed.
Puerto Rico is an island made up of a vast hybridity of people including: African, Arab, Native In- dian, and European. This island also happens to be the capital of the world for Albinism. There are layers upon layers that make up how alibinism manifests physically, inside and out. Albinism is not just white on this island, its black too. There are people who have the condition of albinism, but do not display the physical characteristics commonly known of a person with albinism. They have normal pigmentation, dark eyes and hair. They are black, white and everything in be- tween, and they are all people with albinisim.
The blackest person with the condition is still white, and the whitest person with albinism is still black. Because of the genetics of the people that make up this place, everyone is black, but not everyone is white.
Papa + Mama
mami + papi