How Photographing Albinism Changed This Family's Future

While shooting a story about the condition, Stephanie Sinclair decided to adopt two children with albinism from China

In many places I travel as a National Geographic photographer, I’m the conspicuous foreigner, the pale, blonde woman toting 40 pounds of camera gear. I’ve gotten so used to people staring that I hardly notice it anymore. But this February, when my husband Bryan and I travelled to China to adopt our two children, the sense of conspicuousness was beyond anything I'd experienced.

Forest, seven, and Lotus, three, were born with albinism and swiftly abandoned at state-run orphanages, as is common in China where the condition is seen as a crippling social and economic burden. The sight of these children with porcelain skin and striking white hair was enough to stop people in their tracks. While Forest ogled the giraffes at the zoo in Guangzhou and his sister snoozed in a nearby stroller, strangers stopped in their tracks and trained their cameras on our children. We encountered much of the same curiosity at parks, malls, and restaurants. Most were astounded to hear them speak Mandarin, having assumed these beauties were our biological children traveling with us from America.

In many parts of the world, children born with any disability are considered bad luck, a curse on the family. In some communities, people with albinism are ostracized from schools, excluded from jobs, rejected in relationships, and in extreme cases hunted like animals.

I became familiar with albinism and the dangers faced by those who have it while working on a long-term project on the condition that ultimately became a National Geographic assignment. Albinism is a genetic condition that reduces the amount of melanin in the skin, hair, and eyes, raising the risk of poor eyesight and skin damage, as well as discrimination and prejudice. My husband and I were already in the process of trying to adopt a child internationally when we began meeting the generous, kind, talented subjects profiled in an article on albinism in the June issue of the magazine. Almost reflexively, we began looking specifically for a child with albinism.

Though not biological siblings, Forest, seven, and Lotus, three, share a special bond and have developed a typical sibling relationship. Ours is a family created not through blood lines, but love.
PHOTOGRAPH BY STEPHANIE SINCLAIR

Forest dons Spider Man make-up after a visit to a local fair.
PHOTOGRAPH BY STEPHANIE SINCLAIR

Lotus rests in the afternoon light. While both children are light sensitive, they are more sensitive to overhead fluorescents than natural light.
PHOTOGRAPH BY BRYAN HOBEN

Forest and Lotus get their haircut in Guangzhou, China.
PHOTOGRAPH BY NICOLE CHAN

Forest, 7, and Lotus, 3, get their haircut in Guangzhou, China.
PHOTOGRAPH BY STEPHANIE SINCLAIR

We were matched with Lotus through our agency, Cradle of Hope, in April 2016. As it happened, the Maryland-based organisation was bringing about 20 children from China that June to stay with American families, and the agency asked if we might be interested in hosting one of them, a six-year-old boy, also with albinism. They shared a video of Forest giddily reciting a Chinese poem, and we were instantly in love. Putting Forest back on a plane to China at the end of his summer stay was one of the hardest things Bryan and I have ever had to do. But Cradle of Hope assured us that our efforts to adopt him could be fast-tracked so we could bring Lotus and Forest home together early this year.

People see them now and assume they are biological brother and sister, twins even. Although their typical sibling relationship includes plenty of tattle-telling and arguments over sharing, we know a day will come when they are comforted by each other—loved ones who understand their unique background of orphanage care, Chinese ancestry, adoption, and albinism.

Like many people with albinism, our children have low vision, but as daily activities become routine, it’s easy to forget they’re visually impaired. We play and swim together, participating in many of the same activities most families do, albeit with a lot more sunscreen and a supply of floppy hats to protect the kids’ skin. In fact, they seem so well adapted to their vision issues that it can be difficult to remember to show Lotus areas of the playground where she might get hurt. Recently she walked straight into a low hanging monkey bar, resulting in a sizable bump on her forehead. Their pale skin also makes bruises stand out much more. But in most ways, they’re like every other child their age.

The biggest hurdles we’ve faced have less to do with their albinism than with trying to catch them up academically and socially to their peers, most of whom did not spend their earliest years institutionalised. As any parent of a child with a disability knows, advocating for your child’s rights through the school district requires almost as much patience and persistence as parenting itself.

The transition from childless couple to parents of two has been overwhelming at times. My husband and I joke that we didn’t just dive into the deep end of parenthood—we were shot from outer space into it. But we’ve received tremendous support from the tight-knit albinism community. Through the National Organization for Albinism and Hypopigmentation (NOAH), we’ve met two nearby families who also adopted children with albinism from China around the same age as ours. These connections teach our children that, though there may be only one in 17,000 with their same genetic trait, they are not alone. To that end, it was incredibly gratifying when, during our first meet-up with one family, their daughters were so delighted to meet Lotus, exclaiming, “Her hair is white, just like ours!” When their son said hello to ours in Mandarin—Ni hao— Forest immediately shrieked in laughter and took hold of his hand.

Forest photographs his now-official adoptive parents. He got to know them during a three-week visit last summer. Parting until the adoption was finalised was painful for all of us, but made the reunion that much more special.
PHOTOGRAPH BY NICOLE CHAN

Happily, our children don’t yet know that some societies reject those who look like they do. In fact, they believe, and rightfully so, that they are stunning human beings. While an institution is no place to grow up, they were also clearly raised by loving, if overworked, orphanage caregivers and sheltered from a world that could be cruel towards people with albinism. Unprompted, Forest will occasionally point at his alabaster hair and say confidently, “Beautiful.”

Our kids’ transition to American school has been smooth in part because they are at an age when children are still accepting and kind to each other. However, we have been warned by parents and adoption therapists alike that their uniqueness will likely lead to some painful moments as they age. This is when having friends and a sibling who shares this rare appearance will be particularly helpful.

Unwilling to part with his balloon, Forest fell asleep with it on a visit last summer.
PHOTOGRAPH BY STEPHANIE SINCLAIR

When the June issue of National Geographic arrived in the mail, Forest stared intently at the photographs, declaring of each individual pictured, “That’s my friend!”

One of the many things I’ve learned in my extensive travels is that our differences are cause for celebration, that diversity is key to the rich fabric of society. Bryan and I hope our children, who we love beyond measure, never face discrimination of any kind, whether it be for having albinism or some other ridiculous reason. We hope that, even as they become more worldly, they ultimately see their own condition in a positive light, one of many traits that make them unique, exceptional. And we hope that as they travel the globe—perhaps to Tanzania, to Panama, to their home country of China—that they will continue to attract attention—not because of their pale skin and white hair, but because of their beautiful souls.

Header Image: Stephanie Sinclair and her husband Bryan Hoben with their newly adopted children on "Gotcha Day" PHOTOGRAPH BY NICOLE CHAN

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