I have embarked on an amazing trip. I am attending the Pan Africa Albinism Conference in Dar Es Salaam Tanzania. To follow me please head over to
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.
I awoke today thinking about stigma. Stigma: a set of negative and often unfair beliefs that a society or group of people have about something. When I was a child, our family would often be out and about with our mother. Invariably at the shoe store or the park or at the doctor’s office a stranger would look at us, then unashamed, ask mother who I belonged to? Each time without fail, sometimes with grace and sometimes not, she told the person that I belonged to her. All movement on our part would cease. We knew the rigid back stance, the clear modulated voice our mother used. Her anger was barely contained as yet again she was required to explain, claim, and defend me. The thing is, had any of these insensitive people really looked, they would have seen how much I resembled my mother.
I share this story as this type of interaction happens frequently for parents of children with albinism, especially in nonwhite cultures. This is especially the case for families in Africa where the presence of a child with albinism carries not only stigma from the community but potential danger for the child as well. There have been countless stories of violence toward people, especially children with albinism in East Africa. Remi and Barak are but two of many who have been attacked. They are fortunate in that they are alive. However they bear both physical and emotional scars of the attacks. The cost of stigma in this case is abject fear, causing PWA’s to remain within the safety of their homes. For children it means isolation, restricted opportunities for education as well as a lack of understanding as to why they are treated differently.
One of the ways we can lift stigma is through education and awareness. OHCHR – United Nations Human Rights, Office of The High Commissioner has launched a campaign called People with Albinism Not Ghosts but Human Beings http://albinism.ohchr.org The website contains a wealth of information and I strongly encourage you to peruse it. Another way to squash stigma is as individuals to have an open mind and to be inclusive of others. It requires making a conscious effort, to be present, and to risk being a champion for someone else.
Shortly after I became a parent I found myself out with my young daughter. I often carried her in a sling which made taking buses easier as well as allowed me to keep her close. As I waited for the bus a woman approached me. Her question “where’d you get that black baby?” instantly propelled me back to my childhood. Like my mother, my back straightened. I was shocked. I knew I had two possible responses. The first was to tell her my child was none of her business and the second was to share that I was also black. It was simply that my skin was fair because of albinism. I opted for the latter because I believe in teachable moments. More importantly, I believe in having an open mind as well as living a life with compassion.
Images of Remi and Barak used from UTSS Facebook page.
beauty and I have had a rocky relationship. As an adolescent, all I ever wanted was to fit in. Yet, there was no way fitting in would ever be my reality. Combined with my biological mother’s discomfort of having a daughter with albinism, I learned early I was valued for my intellect rather than my looks. Today, I am sharing an excerpt of a short story I wrote about dying my hair for the first time. The year was 1975. Please note that I use the word albino rather than identifying as having albinism as this terminology had yet to be established.
From Searching For Pretty By Natalie Devora
Finally I heard her say something about meeting a woman and her daughter. “What did you say mama?
“I knew you weren’t paying attention. Sit down.” She went on to tell me she had met a woman and her daughter who were both albino. My head shot up looking at her directly for the first time. had she said what I thought she’d said. “You did? What did they look like? were they pretty?
I had never met anyone else albino at that point in my life. I couldn’t believe it. Why was she so lucky. Why had it not been me with her? “yes they were very pretty. That’s just it. I met them in the hair color aisle. I was going to get some color for my hair when I saw them. The lady told me that she and her daughter colored their hair and no one knew they were albino. She was beaming with excitement. Her face was all happy and shiny while she talked. “Wait a minute” I said. “How could people not know?” My library trip was long forgotten. It had been replaced by a dreading in my heart. My stomach, suddenly tight. What was mama saying, really saying?
Mama was up to something but I didn’t know what. Oblivious to my sudden quiet mama went on. “Oh they color their hair and they wear makeup. You know eyebrow pencil, mascara and blush. Lipstick too. They looked normal like everybody else.”I said nothing. ” So I got to thinking, well i had to tell them about you and we all thought that you could dye your hair too..” I’d begun to chew on my nails which she noticed and made me stop. I didn’t want to dye my hair i told her. I would look strange. I envisioned myself with dark brown or black hair looking like a freak. Mama went on telling me she thought I would look good with my hair a different color. “We would be similar you and I since I color my hair too.” I wasn’t convinced. We sat our knees touching while she tried to convince me about the hair color. ” See look what I bought for you.” Mama emptied out the white bags with the Pay N’ Save name on them. There was a box that had Nice and Easy printed on it. There was a white woman with yellow blonde hair on the box. See its not dark at all Mama said convincingly. The box sat in my hand as I gazed down at it. I knew there was no way out of this crazy idea she had. Mama would make it seem like I had a choice when we both knew i didn’t.
“And I didn’t tell you the best part, she went on. You can wear makeup.” Did she say makeup? Wait a minute I told myself. I had been told I would have to wait until high school to wear makeup. And now if i let mama dye my hair i could wear makeup. I could not believe my ears. “I can wear makeup? I asked in a small voice. Taking my face in her hands, mama told me yes I could.
It is with great joy that I take on the #HatGivingChallenge which has just launched today by Under The Same Sun via their Facebook Page. Hats, sunscreen and sunglasses help to improve and save lives of people with albinism. I have worn hats, sunglasses and sunscreen from as early as I can remember. I know the protection these items provide first hand.
From Under The Same Sun:
LAUNCHED!!! Take the Hat Giving Challenge!!! To mark International Albinism Awareness Day, post a picture of yourself in your favorite sun hat, and donate $5 to give a hat to a child with albinism in Tanzania here http://bit.ly/1GgN5l9
THEN challenge 3 friends to do it too! You’ll help protect vulnerable children from deadly skin cancer, and create awareness at the same time. #HatgivingCampaign and #hatgivingChallenge for #AlbinismAwareness2015
Children with albinism in Sub-Saharan Africa are at greater risk of developing skin cancer. Please consider contributing to this cause. I have made a commitment of a monthly donation.
How this works: Post a picture of you wearing your favorite hat, make a donation, then challenge three of your friends. I challenge Mojeta Mosley, Debi Young and Dorothy Lee.