Thando Hopa: So I’m going to tell you a lit­tle bit of a sto­ry. So, In the 1940s, two American doc­tors ran an exper­i­ment known as the doll test.” So the sci­en­tists want­ed to under­stand the impact of racial seg­re­ga­tion and dis­crim­i­na­tion on African American chil­dren. The test was quite sim­ple. Children would be called in and shown two dolls that look exact­ly the same, with only one dif­fer­ence: the doll color. 

So, I received footage show­ing ver­sions of this exper­i­ment and I watched as chil­dren who as young as five years old iden­ti­fied the dolls accord­ing to their racial per­cep­tion. Now, one doll was iden­ti­fied as the black doll, and the oth­er doll was iden­ti­fied as the white doll. 

So ques­tions direct­ed to the chil­dren to reveal which qual­i­ties they thought each doll to have. Now, the ques­tion went some­thing like this: Which doll is pret­ty? Which doll is ugly? Which doll is good. Which doll is mean? 

Now, the video dis­plays chil­dren, despite their race, assign neg­a­tive attrib­ut­es toward the black doll, and pos­i­tive attrib­ut­es toward the white doll. And the ques­tions went along this vein until the ques­tion was asked that brought us back to the impact of the study. And that is Which doll looks more like you?” 

Now, I paused when this hap­pened. Because two obser­va­tions ran through my mind. The first one was watch­ing the heart­break­ing expres­sions on the faces of African American chil­dren as they painful­ly reached for the doll that looked most like them. It was the doll that they and most oth­er chil­dren had assigned neg­a­tive attrib­ut­es toward. It was the doll that I iden­ti­fied with as a black woman. 

Now the sec­ond obser­va­tion. There were no African American chil­dren with albinism among the chil­dren who were being inter­viewed. So I start­ed think­ing about how I would have respond­ed if I was one of those children. 

Now, I iden­ti­fied with the black doll, yes. But that is main­ly because it embod­ied my expe­ri­ence, but I was also quite aware that the white doll resem­bled my appear­ance, as a per­son with albinism on the basis of col­or. So for those of you who don’t know, albinism man­i­fests in all races. It is a lack of pig­men­ta­tion in the skin, hair, and eyes. And this means that for peo­ple of col­or with albinism we usu­al­ly have bod­ies that con­tra­dict the dom­i­nant under­stand­ing of our race. 

Now this exper­i­ment made me intro­spect on the two cul­tur­al and his­tor­i­cal forms of racial dis­crim­i­na­tion that merged into my one body: my black­ness in terms of race, and my albinism in terms of col­or. So African American chil­dren would be born with­in the inter­sec­tion of race and albinism, plac­ing them in a world between worlds. 

Now, when I was born, my grand­fa­ther named me Umtana Wothando, which means a child of love.” He was well aware that I was born into a body that spoke for itself, before I could speak for it. Now grow­ing up I grew up in a com­mu­ni­ty that was filled with diverse peo­ple of col­or, and I remem­ber that when I was about six years old I viewed my first day of school as an excit­ing and scary adven­ture. I was so full of antic­i­pa­tion that my par­ents could­n’t con­tain the ener­gy that was burst­ing out of my lit­tle body. And I think that gen­der was the only social strat­i­fi­ca­tion at this point that I knew. 

However, like most chil­dren who are dif­fer­ent” in one way or anoth­er, school became an ini­ti­a­tion ground. In that I was the only per­son in my school who did not have brown skin. And not only that, the lack of pig­men­ta­tion that ran through my body—including my eyes—resulted in me being short-sighted, so I strug­gled to make out the words and num­bers on the chalk­board as well as on my school books. 

Now, the set of cir­cum­stances that my body found itself in was met with some antag­o­nism from some of my peers as well as some adults. And I grew to under­stand that there was a whole insti­tu­tion that was cul­tur­al­ly cre­at­ed about my exis­tence. From deroga­to­ry names in almost all sub-Saharan African lan­guages, to a for­mal­ized English term which some of you might know. The term albi­no.”

Now accord­ing to the Oxford Dictionary, albi­no means a per­son or ani­mal with a con­gen­i­tal absence of pig­ment in the skin and hair, which are white, and eyes which are usu­al­ly pink. Now apart from oth­er issues with that def­i­n­i­tion, I need to men­tion that as a black per­son, I have in my racial his­to­ry a sore spot that is reignit­ed when ever my exis­tence is described on the same wave­length as you would an animal. 

So albinism is no dif­fer­ent for me. So for clar­i­ty my pre­ferred ter­mi­nol­o­gy is per­son with albinism,” not albi­no. But the plot does thick­en for albinism. In that in cer­tain con­texts I’ve been sub­ject­ed to super­sti­tious beliefs; to neg­a­tive sci­en­tif­ic inter­pre­ta­tions that described it and labeled it as a genet­ic dis­or­der, or a con­gen­i­tal dis­ease; to cin­e­mat­ic mis­rep­re­sen­ta­tions that por­trayed it as a freak of nature, or as evil; to almost no rep­re­sen­ta­tion in the beau­ty econ­o­my at the time. So as a young woman, I was liv­ing in a cul­ture that was built up to dis­miss mar­gin­al­ized and dis­crim­i­nate against my kind of human expe­ri­ence. Albinism was cul­tur­al­ly cre­at­ed to being an insti­tu­tion­al­ized other. 

Now, all this socially-constructed mad­ness told me that we as a soci­ety strug­gle to see dif­fer­ence as part of human diver­si­ty be it race, gen­der, sex­u­al­i­ty, or be it albinism. The pat­terns of oth­er­ing were unde­ni­ably sim­i­lar. But, my life went on with a sem­blance of func­tion­al­i­ty. And I went through many lived chap­ters in my life. And I land­ed on one strange but enlight­en­ing chap­ter, which I locate in my adult life. 

So the year was 2012. And I met design­er Gert-Johan Coetzee, who’s a fash­ion design­er. I was a full-time pros­e­cu­tor at the time, and he asked me to do a fash­ion shoot for his cam­paign. Now, I was reluc­tant to say the least. And I remem­ber I had this con­ver­sa­tion with my sis­ter and I told about the ridicu­lous prospect of me being a mod­el while being a lawyer. And she said in turn, she said, You know, I don’t under­stand why you think this is such a ridicu­lous idea. Do you know how many per­cep­tions you could change using this plat­form?” Now, I was unaware at the time that she was actu­al­ly giv­ing me a mis­sion state­ment for the work that I was about to do. 

So any­way, I reached out to Gert, and dur­ing our meet­ing I gave him the most mat­ter of fact legal voice that was loaded with years of insti­tu­tion­al bag­gage. I said, Gert, I will do this mod­el­ing thing, pro­vid­ed that we rep­re­sent albinism in a pos­i­tive way.” Now, I was about to embark on a jour­ney that would show me what an over­sim­pli­fi­ca­tion that state­ment actu­al­ly was. 

So I com­plet­ed my project with Gert. And I actu­al­ly had fun doing the shoot. But the inter­est that the project gen­er­at­ed from dif­fer­ent indus­try play­ers would help me quick­ly under­stand that this was not going to be an easy journey. 

So I’m gonna take you to a year lat­er, 2013. I have this amaz­ing shoot with Forbes Life mag­a­zine. And this shoot actu­al­ly doc­u­ment­ed a deci­sion that would be a hall­mark deci­sion in my career. And that was to present my eye­brows and eye­lash­es as pale, believe it or not. 

Now, I had always, always, always altered my appear­ance by just dark­en­ing my eye­brows and eyelashes—and this is just how I pre­sent­ed my beau­ty to the world and to my nuclear com­mu­ni­ty. But note. The image of black albinism was usu­al­ly not cel­e­brat­ed in our glob­al beau­ty cul­ture. And not only that, in our South African pop­u­lar cul­ture I had not seen the image being asso­ci­at­ed with beau­ty. So this par­tic­u­lar deci­sion was accom­pa­nied with…a lot…of self…doubt.

So the shoot end­ed, but my deci­sion con­tin­ued. And I was met with some resis­tance from indus­try cor­ri­dors when I pur­sued my new” appear­ance. So the behind-the-scenes advice went some­thing like this. Oh, but. You have to put on mas­cara on your lash­es and dark­en your brows or else your face is going to dis­ap­pear, sweet­ie.” Or, How? I thought you said you were done with your make­up. Did you uh, for­get your eyebrows?” 

Now the odd thing was, I was just try­ing to look like myself. I was try­ing to embrace the unique char­ac­ter­is­tics that half a mil­lion peo­ple across the world are born with. I want­ed to be the kind of woman that the younger me looked for in mag­a­zines but just nev­er found. 

Now with the upcom­ing new world of diver­si­ty, old ideas still per­se­vered in the dom­i­nant cul­ture, and I start­ed feel­ing like I was unnec­es­sar­i­ly choos­ing a hard­er route. But inter­est­ing­ly, albinism was not the only rep­re­sen­ta­tion that affect­ed me. Because race, gen­der, and nation would also remind me of their rep­re­sen­ta­tion­al harm in media. Black peo­ple, women, and Africans, are still ward­ing off the impact of harm­ful rep­re­sen­ta­tion in media that they did­n’t even have equal con­trol over. And the rep­re­sen­ta­tion expressed itself in our pop­u­lar cul­ture through neg­a­tive stereo­types, exploita­tive rep­re­sen­ta­tion, objec­ti­fi­ca­tion, and mis­rep­re­sen­ta­tion that com­mu­ni­cat­ed social inferiority. 

So my albinism, my black­ness, my wom­an­hood, and my African-ness would make the ques­tion of who I rep­re­sent quite a polit­i­cal­ly loaded affair. My body attract­ed sce­nar­ios that remind­ed me con­sis­tent­ly that I car­ry more than just one iden­ti­ty. My in front of the cam­era image was usu­al­ly accom­plished after maneu­ver­ing microag­gres­sions and stereo­type— not just about albinism but about race, gen­der, and nation too. 

Now, I’m going to give you a cou­ple of exam­ples. Race. So, we would love to sign you. But you would look more acces­si­ble with like a long brown weave.” Or, Oh, uh, could we make her lips small­er?” Or, I’m sor­ry, I just can’t work with hair like this.” 

Now, the nuanced attacks that I received were not just lim­it­ed to race, because being a woman came with its own set of chal­lenges. Gender. Hi. So I know that I’m ask­ing you to do this pret­ty late on set, but could you just put on this shirt. It’ll show a lit­tle bit of your nip­ples but…it’ll be taste­ful­ly done.” Or, Relax. He’s just ask­ing you to put on boob pasties. I mean you’re gonna seri­ous­ly have to stop being so conservative.” 

Now, to be clear, female sex­u­al­i­ty and sen­su­al­i­ty are to be cel­e­brat­ed. But from a place of bod­i­ly agency and body sov­er­eign­ty, not from a place of expec­ta­tion or obligation. 

Next, Africa. Could you tell us about the albi­no killings in Africa? What are some of the super­sti­tions albi­no Africans have about albi­nos?” Or, Do you con­sid­er your­selves war­riors for your cause?” Or, Could you let us know about the most fright­en­ing expe­ri­ence in your country?”

Now, I would read about Africa as if it is one big coun­try. Not a con­ti­nent with com­plex­i­ty and vari­a­tion. I was con­sis­tent­ly asked the same ques­tions, to con­firm the same nar­ra­tive, indis­crim­i­nate­ly, with­out much con­text giv­en. And I real­ized that the much, much, much-needed albinism aware­ness was being invad­ed by endur­ing stereo­type about what Africa is sin­gu­lar­ly under­stood to be: a place of fear, vio­lence, strug­gle, and witchcraft…overlooking bal­anc­ing nar­ra­tives about fam­i­ly, com­mu­ni­ty, progress, and culture. 

I felt as though the envi­ron­ment was clos­ing in on me, and that it was not ready to receive or adapt to difference—not in con­tent, or in form. I felt like there were just too many stereo­types to jug­gle, too much prej­u­dices to counter, too much racial and gen­dered his­to­ry that was play­ing out in my every­day activ­i­ties in my career. 

Now, as a black, African, woman, with albinism, my very exis­tence attracts social and polit­i­cal con­se­quences. And all of it is sig­nif­i­cant for me. It is my world between worlds. In the same way I could not just pick one doll, I can­not just pick one iden­ti­ty. An inclu­sive cul­ture accepts that it is not this or that. It is this and that. 

The com­bi­na­tion of our many worlds is a cul­tur­al resource, and if I’ve learned any­thing from my var­i­ous expe­ri­ences it is that we are a prod­uct of cul­ture. We are a result of all the nar­ra­tives and the cul­tur­al con­structs that are pro­ject­ed onto our bod­ies, how­ev­er we can reshape these nar­ra­tives and become pro­duc­ers of culture. 

Now, I’ve learned to use my mul­ti­plic­i­ty as a cul­tur­al asset. In that I choose projects that give me var­i­ous access points to human­i­ty through my mul­ti­ple iden­ti­ties. And I find that projects that allow for con­sul­ta­tion, shared con­trol over rep­re­sen­ta­tion, cocre­ation, authen­tic­i­ty, and allow for an embrac­ing of multifaceted-ness, these projects leave an unde­ni­able cul­tur­al foot­print. But most impor­tant­ly, they bring us clos­er to inclu­sive nar­ra­tives and cul­tur­al reform. Now the next projects that I’m going to share with you are my col­lab­o­ra­tions which are kind of like my favorite anecdotes. 

Now the first one is the Audi #untag­gable cam­paign which part­nered with Ogilvy. And the cam­paign was about chal­leng­ing stereo­types and sin­gu­lar iden­ti­ty myths. 

Now that was the award-winning #untag­gable campaign. 

And the next one was the Pirelli cal­en­dar, an all-cast cal­en­dar that real­ly spoke about race and rep­re­sen­ta­tion but also it was a his­tor­i­cal adap­ta­tion of Alice in Wonderland.

And the next one was the Foschini cam­paign. This cam­paign spoke about wom­en’s sol­i­dar­i­ty as well as affir­ma­tions, and it was called the I am all woman” campaign. 

And the last one I’d like to share with you is Vogue, which not only made his­to­ry in terms of albinism and rep­re­sen­ta­tion, but also cel­e­brat­ed the beau­ty of African fash­ion and luxury. 

Now, look­ing back at the doll test, the gap that I inhab­it­ed with­in the test remind­ed me that there’s always a world between worlds. And that an unseen exis­tence does not amount to an absent exis­tence. And the reminder man­i­fest­ed in a…try­ing but infor­ma­tive media jour­ney that assert­ed that an absence of rep­re­sen­ta­tion does not trans­late to an absence of life, of tal­ent, of per­spec­tive, of com­plex­i­ty, and of value. 

Now, if we respon­si­bly access one anoth­er’s human­i­ty by redesign­ing cul­tur­al envi­ron­ments and nar­ra­tives to being more inclu­sive, then the bet­ter our chances are in build­ing an expan­sive cul­tur­al econ­o­my, but also build­ing a future of that dares to be large enough to see all of us par­tic­i­pate in it. Thank you.