Time has flown by. When I committed to writing and posting daily as a way to share more about albinism, I knew it would pose a challenge for me. Until now, I have been at best an intermittent blogger. The past twelve days has allowed me to push myself as a writer, delving into some personal experiences which I knew would and have generated lots of emotions.
Growing up with albinism in the 1960’s and 1970’s in the Black community was far from easy. For my culture this was a time of standing up for our rights, requesting, no demanding racial equality. Honestly, we continue to fight this battle today.. As a young girl, (six) I would be in my grandparents backyard, equipped with a radio, in my personal shaded alcove. It was really an open shed that housed garden supplies. I could be heard singing “Say it loud, I’m Black and I’m proud” by James Brown at the top of my lungs. I loved that song. Indeed I was black and proud. For me it was a declaration of my identity.
Later as a teenager, upon enduring horrible bullying by schoolmates who were also black did my thinking begin to change. I did not understand why they did not see me as one of them, when I too, was/am black.
When I went off to college, I did so a little early to participate in an EOP Educational Opportunity Program for students of color at the university I attended. When I arrived, the student registering everyone kept trying to send me over to a different dorm for sorority rush. After I insisted he look up my name did he see for himself I should be there. This was the beginning of an entirely different experience. Overwhelmingly, others did not view me as ethnic. I had the same experience amongst the other students of color. My way of dealing with this was to form friendships with whomever I pleased. Whomever, in this case meant whites. I stopped dying my hair. I blended in. I was a chameleon.
As an adult, I take my identity seriously. I have come to peace with both being African American and with having albinism. When people ask me, “so what are you?” I know they mean where do I fit ethnically. Most often I respond with, I am a white skinned black woman.
International Albinism Awareness Day is three days away. I am so very excited. Never before has there been an opportunity to bring worldwide attention to this condition. Additionally, with the passage of the measure by the United Nations my hope is that through education, awareness and publicity, people with albinism in other countries who currently live in fear and have fewer resources, will have improved lives.
Just as I see a significant increase in awareness about albinism within the United States from that of my childhood (there was none), I believe more knowledge and outreach are needed. When I attend events sponsored by NOAH, (National Organization for Albinism and Hypopigmentation) it is the children I enjoy most. I love seeing their joy and freedom. I am in awe because so many of them are forthcoming and direct about having albinism and being visually impaired. I find myself in a state of “wow.”
Can you imagine the difference possessing the security, safety and freedom to share about yourself would mean for children throughout Africa, Asia and the Middle East? I believe they would stand tall. They would take pride in who they are rather than be ashamed or be in fear of being shunned because of a condition they are affected with.
There are numerous organizations that are doing the hands on work especially within East Africa. Asante Mariamu Under The Same Sun http://www.underthesamesun.com are two such organizations. Additionally, The World Albinism Alliance provides a list of organizations worldwide that focus on albinism. http://worldalbinism.org
I want to talk about family. Families are important to the social and emotional development of children. Within the family unit children are loved, nurtured, taught valuable skills and have a sense of belonging. At least this is the case when family works. When, in the event a child, especially a child with albinism, is without parents or siblings, then there is loss.
My family of origin is huge! Just look at the photo above. And this is just one side of the family. I grew up amongst my siblings and tons of cousins on my maternal grandmother’s side of the family. There were gatherings, celebrations and Sunday dinners after church. When with my cousins, I was free to just be. The older ones looked after the younger children, of which I was one. Yet there was camaraderie, there was love and there was fun.
I have shared a small bit about my mother. Yes she was surprised by giving birth to a child with albinism, yes she did the best she could, given my needs and the care of her other three children, and yes she loved me as much as she could. She was my advocate, demanding that I be allowed a mainstreamed education before that was ever a requirement for children with disabilities. And, yes, she reached her own breaking point where she just wanted me to look like everyone else. By the time I was in high school, mother could not do or give anymore for/to me. She would address me in the third person or ignore me altogether. I continued to have household responsibilities, however more often than not I was left to myself.
For many children with albinism living in East Africa family has come to mean the relationships they have with their peers, teachers and care givers within the residential schools they call home. They do not have parental support and love afforded others, for many have been shunned by their communities. I cannot pretend to know how these children feel about their situation. I do however have compassion for them. I do know that children are resilient and that in these schools there is camaraderie, there is a bond shared. For without their existence the safety and well being of these young people would be in greater jeopardy.
I have been fortunate enough to leave behind aspects of my family of origin that no longer worked for me and instead create the family that suited me. Back in high school I had a teacher who saw potential in me and who also recognized I needed mentoring. She is still a vital part of my life. I like to say that I have two mothers. I was birthed and raised by one and sent off to the finishing school of the other. I now refer to Carol as mom. She has and continues to love me, push me, encourage me as well as tell me hard truths when I need them. Mom is the woman I go to when I am troubled or when I need to bounce ideas off of someone. This is the nature of our relationship. Mom and i share things with each other. Deep things. I have been profoundly affected having her as my mom. My albinism has never been an issue for her. Mom has always seen well beyond my physical attributes. I have learned immeasurable skills from her for which I am eternally grateful. Coupled with the childhood lessons I learned from mother I am an unstoppable force.
There are those who believe that blood is thicker than water. I believe that it is the water along with the blood that sustains me.
I am who I am and I care not what you think about me. This is the grown up version of sticks and stones may hurt my bones but names will never hurt me. The truth is most of the time I am oblivious to the stares bestowed upon me. I am focused on getting from one place to another, or most recently, navigating my way through a concert venue. Although I may not see people staring, I can feel them doing so. I learned a long time ago that if I allowed myself to be affected by every look or insensitive statement hurled my way, I would never leave home.
However, unlike the rhyme, words do hurt me. Sadly I have been most hurt by the words of people form my own culture. I have been asked why I was at events that were solely for African American women. I have been told I did not belong, was not welcome and that simply put, I wasn’t Black enough. Those who declared these statements might well have told me that I wasn’t’ human for I was treated as other. What this did to me, how I was affected, was with internalized racism. I already battled the “I am way too different to be embraced by this community or that community” and yet I continued to show up. Though the bottom line was that I never felt completely me within the black community.
As a teenager I was bullied. I was physically attacked in junior high school mostly because of the color of my skin. The attack left me with a bloodied nose, bruised ribs and with a sense of terror. Afterward, I no longer wanted to be black. The first year of high school bore similar encounters. The difference was that my older brother was in school with me and upon learning that kids were throwing food at me, he did what many big brothers often do, he punched the boys. He let them know I was his sister and I was off limits. In time i developed friendships. I had a core group of cohorts and we looked out for one another.
In my early adulthood, I began to spread my wings. Prior to this time, I had been very shy. The shyness was a cover for fear. Fear of being treated poorly, fear of not being able to see what might be coming my way and fear of rejection. Living life affected with albinism makes me vulnerable in the world. This is a reality. And yet, I believe in living life fully.
I have worked to heal the internalized self hatred that developed as a result of my appearance. This has been at times hard and yet incredibly rewarding as I am clear that I define myself as an African American woman with albinism. I also say that I navigate the world as a white skinned black woman. When I share this with people, in just this way, they get it. Consequently there is a greater degree of acceptance.
Part of living my life fully has meant that I have come to be comfortable in my own skin. I have come to love myself. Unlike the girl I once was who, instead of pushing back against those who teased me,, I now pause. I ask myself, how do I wish to address the insensitive or ignorant statement directed my way? Honestly, my response depends on the context with which someone comes at me. And believe me, I can tell by the tone of their voice. If there is genuine curiosity, I am more inclined to share information about albinism. If, on the other hand, there is judgement or plain meanness, I choose to walk away. Because, in the end, I am who I am and I care not what you think about me
I arrived at school Monday ,my hair colored light ash blonde, my face made up. Once at school I made my way to my favorite teacher’s portable. Miss Green was the best. She was a great listener always willing to make time whenever I needed to talk to someone or to offer practical words of wisdom when I had hurt feelings from being teased. I’d hoped she would be in her room and she was. I stood in the room my eyes adjusting from the bright morning sunlight to the artificially lit room. I waited for her to notice me. Unable to stand her not saying anything I said good morning and asked if she noticed anything different about me. I stood allowing her to take in the new me. Miss Green regarded me, settling finally on my face. The one and only question she asked was whether or not I liked it all. There was no judgement, no ‘why would you have done this to yourself.’ There was only the gentle smile on her face giving me permission to like or dislike the newly created me. I stand forever in gratitude for that response. She let me go on and on abut the entire process until glancing at the clock I was reminded I had a class to be at.
I slid into my desk. I did all i could to draw as little attention to myself as possible. Pretending to not hear the whispers around me I focused on my math book. When the final bell rang everyone looked directly at Mrs Alexander. There were still a few whispers behind me. Two girls were talking about me. All of a sudden my confidence about my new self dissipated. I felt exposed and uncomfortable. My cheeks burned with embarrassment. The girls were called out having to walk to the front of the room to face the strictest teacher in the school. Lowering my head i peeked to my left noticing others doing the same thing. Some stifled snickers with coughs while others did what they could to stay under the radar. Strands of golden blonde hair touched my arm. For better or worse this was my hair i told myself so i might as well make it for better. Hearing the door close i sat up looking for the two chastised students. They were gone. And so began my first day at school as a blonde.
In the halls between classes bore a completely different story. Everybody noticed me. A few girls said they liked the blonde. they told me the color brought out my face. Still others told me they were jealous that i could wear makeup. When i shared that it had been my mom’s idea that alone made me suddenly cool. Smiling, happy with the attention I closed the locker door finding the two girls from algebra looking at me. “You look stupid,” one said and ” don’t think that makes you normal. You’ll always be a freak.” came the other. My face crumbled, cheeks burning with hurt and shame. Holding in the tears which stung my eyes wanting to spill forward I walked away quickly hurrying upstairs to my next class. So much for looking normal i muttered to myself. I would never fit in and I knew it.
Fitting in is all I ever wanted as a teenager. This is what all teenagers aspire toward. When you look different, act different, think different, are different from everybody else you stand out. You risk being the target of unwanted attention. You risk being an individual with your own thoughts, you risk being included and accepted for who you are. I wish I had known these things when I was young. I wish all teenagers, all children knew this in the moment and I wish the world were kinder. Thankfully I am no longer so naive as to believe we all get treated equally for this is not so. As a girl who didn’t see well and as a girl with white skin in a community of brown I was other.
In retrospect, I understand that my mother’s desire to have me color my hair stemmed from a need on her part for have me present as normal. Additionally, I choose to believe that she chose this path for me out of love. Embracing the latter has proved challenging because if you love someone, why can you not accept them for who they are? Perhaps had I met the woman and her daughter as my mother had, I might have had the idea rather than having a plan presented to me, which I had no option but to comply with.
After I graduated from high school, I left for college. With a newfound freedom, I stopped coloring my hair. My mother and I used to argue abot my decision because, well she wanted me to do things her way. In the end, this was the begginning of my independence. My choice to embrace my identity as a black woman with albinism allowed me to begin to love myself.
Today’s blog could not have been accomplished without the help of my daughter Jewel Devora.
For as long as I can recall I knew I would be a mom. During my twenties I felt strongly that I wanted to have a child with albinism. I wished for a child who looked like me. I know this is the desire for many, though not all, women with albinism. There is a need to see ourselves reflected in another being. Well, in my case the path to becoming a parent was far from straight forward. After several failed attempts at conceiving, I discovered I had fertility issues. Still, I/we tried. I asked myself what was more important, birthing a baby or parenting a child? In late June of 1995 my daughter was born. Less than 24 hours later I held her for the first time. My life was forever changed.
Through my daughter I have learned a multitude of life lessons. Parenting with albinism has been one of the best and most challenging adventures of my life. Of course my girl walked at nine months old. Of course she climbed shortly thereafter. Of course my vision was taxed to the max whenever we went to any of her favorite playgrounds. I established rules like, “if you can’t see me, you are lost.” And “if I call you, you must come to mommy straight away.” In all honesty, this was the easiest aspect of parenting because young children are mostly cooperative.
Once my daughter began elementary school, I was faced with new challenges. There were new faces and voices to memorize, relationships with other parents to form. The school sent home weekly newsletters and annually send forms that required updating. After struggling with the small print for two years I approached the administration to see if the information could be sent electronically. I needed to educate others so that I could gain assistance for my visual needs. For me it was a vulnerable moment. For the school, my request created a new protocol of disseminating information.
Throughout my daughter’s education there were various sports events to attend. Most often I was able to see her because she was either one of two or in some cases the only child of color on the team. This is simply how it was. I found ways to identify my daughter so that I could cheer her on. It also helped that she was quite tall. Once at an obscenely early soccer game i came prepared with a set of binoculars. A parent remarked on me using them. I simply stated that I was visually impaired due to albinism. From that point forward, the word got out and some parents would approach me in social gatherings or let me know where exactly my daughter was on a field or within a group. These are small things, yet monumental ones for me that which I had to often overcome. Primarily the battle was internal. How much about my vision or about albinism did I want or need to share? How uncomfortable was I willing to be? Was I willing to not see my daughter score a winning goal because I didn’t want to use adaptive equipment? Would I pass on taking her to a pool party because I didn’t wish to be in the sun?
The most difficult aspect of parenting with albinism was the impact my albinism had on my daughter. her friends would ask her if I was her why I was so white when she was brown? She would end up educating her peers about albinism, which I didn’t learn until she graduated from high school. I asked Jewel if she would consider sharing an experience about the affect of having a mom with a disability had on her life. Here is what she shares:
I remember being in the “anything my mom does is the worst thing in the world. She’s trying to take over my life and control me and I can’t be tamed” mode. I was 16 and she had taken me out of school to travel with her to Europe. It was a trip to remember, really fun, lots of spirits, and lots of laughs. The time we spent anytime we travelled were some of my favorite.
I remember on our journey home, my mom was being especially annoying. And I was over it, if only I could remember what exactly she was doing or saying so I could look back and see how ridiculous i was being. All I know is I was done and my little 16 year old brain told me to walk off and leave her to her own devices.
I walked maybe 30 feet away from my mommy and I turned to realize she couldn’t see me. And all I saw was fear, imagine a huge hub airport with thousand upon thousands of people hurrying by, late for flights and trying to make connections. And there was my mommy with our luggage looking around, panicked that she could not see me. If my mom was anyone else, if she didn’t have albinism, she would’ve seen me and probably ran over grabbed my hand and scolded me. But she didn’t, she couldn’t.
I felt a sense of sadness and selfishness that I had walked away from my mom and left her like that. It was one of the first times I had ever seen my put together mommy be vulnerable and let me tell you, it freaked me out. I knew in that moment, this was what being the daughter of someone with a disability meant, I knew this was what everyone was talking about when they asked me what it was like to have a mom with albinism.
In that moment I chose to suck it up and walk back to her. Even though I didn’t let on that I felt badly, I did. I grabbed her hand and with a giant sigh said “come on mommy! Let’s go!” And we walked to the gate, boarded our flight and went back to our usual routine in San Francisco.
I love my mom a lot, and care deeply for her. And because of her albinism I’ve had the ability to be an educator an advocate and more accepting than my peers. Though we’ve had our challenges and differences at the end of the day she’s taught me how to be a good human before I was the age of 12 and for that I am forever grateful.
Jewel and I have a wonderful relationship. I have come to learn that parenting does not cease when children head off to college, it just looks different. I am her mentor, her friend and her mom. Our conversations are varied and full of depth. I learn continually how to take risks, how to ask for what I need so that I am able to experience life fully.
Here is the second of three excerpts. Happy reading.
Once the dye was washed out, my hair shampooed and conditioned I toweled it dry. Once Again I found myself in the bathroom mirror.. My hair looked like it was yellow blonde. It didn’t look like the lady’s hair on the box. I breathed a sigh of relief.
I sat on the edge of the bathtub blow drying my hair so mama could straighten and curl it. While I dried my hair I worried about what school would be like come Monday. Would people laugh at me thinking I was pretending to be someone else other than who I was or maybe I would just be ignored like usual. I hoped I would be ignored. Back in the kitchen chair my hair was straightened with the hot comb. I hated the hot comb because my ears or neck always got burned and I would be told it was my own fault. Today I managed to escape being burned. As mama did my hair she told me how lovely it looked. She told me how smooth and shiny my hair was. I was allowed to run to look in the mirror once more between the pressing and curling. I was amazed. I liked the color, sort of. While i still didn’t look like the woman on the box my hair did look good. Curling my hair took far less time than straightening it did. The black thin ironed curler sat on the stove just as the straightening comb did to heat. I could tell mama was just putting a loose curl or bump as we called it on my hair. She didn’t want to put too much stress on my hair she’d said. When she was done and had styled me to her liking I was allowed to see the newest version of myself. Wow did I ever look different. I looked like, somebody I might see on the cover of Seventeen, a magazine for teen girls.
We returned to mama’s bedroom where she took the eyebrow pencil, mascara, eye shadow and blush from their packaging. Carefully she applied each. Once done she applied a coat of coral pink lipstick to my lips and stood back to admire her work. Passing me a handheld mirror she waited for my response. For the first time i had lips, I had eyes and eyebrows and eyelashes. I could see my face. I was amazed. This was very cool. Before I couldn’t really see my face in detail. I didn’t notice the nuances of my facial structure. I knew how my lashes, brows, nose cheeks and mouth felt as I touched them often memorizing it all but i had never seen myself. Looking up at my mother I was speechless. Finally I threw my arms around her thanking her. I liked what I saw. No longer did I think of myself as a blob like the Pillsbury dough boy or like the cartoon ghost Casper. I thought of myself as a person. I thought of myself as pretty. I stared at my reflection for a long time. I wanted to cry because I was happy but mama told me my mascara would run. So instead I traced the parts of my face my fingers knew so well admiring them with newfound eyes. My eyes weren’t different just what I saw with them was.